Alex J Green, Forever in our Hearts ...
             
                                                                                                                       Photos courtesy of Christy Jenkins Photography

Updates
Monday, June 5 2017: It seems so unreal to be writing on this page.  I have thought about different updates to write over the last year but could not bring myself to do it.  This page has always been an outlet for me, a place where I could not only update everyone on the latest with Alex but a place also where I could gather and share my thoughts.  Its been a place where we have shared triumphs, where we have shed tears, and a place where we have asked for many many prayers.  I am forever thankful to our cousin Steven for setting this website up for us and for journaling those first few weeks when Alex was first diagnosed back in 2009.  Below will be my last update on this page...but because I truly feel as though I need a place like this still to write, we be adding a blog page to our Alex's Army website and will be transferring over all of these previous posts to that page.

This is proving to be so hard to write...one year ago today, at 8:20 am June 5 2016, our sweet strong and brave boy went to heaven.  I am so thankful for the time we had leading up to his passing.  I am so thankful that while our prayers for Alex's healing here on earth did not happen - that he did not suffer and that he did have peace - the answered prayers for comfort and peace and the fact that we know with all our hearts that we will see Alex again one day are the ONLY reasons we can now keep going. 

It is often said that God works in mysterious ways, while I certainly still have more questions than answers and struggle with many things, I definitely can clearly see how God answered our prayers for comfort and peace for Alex through this.

When we were in Kentucky for the National Basketball Tournament, Alex was diagnosed with a blood clot.  We went to the hospital there and were admitted.  I remember being SO furious at God...WHY, why would he NOW allow this blood clot to form.  Alex had been in a wheelchair for years and not once had an issue with this.  But NOW, now that he was on hospice, now that he had peace about Heaven and we didn't want to deal with hospitals any longer...why NOW does he get a blood clot?  Alex would have to get shots twice a day to treat this blood clot.  Like all kids who go through cancer treatment, Alex had countless port accesses (if you've never seen a port access needle look it up - its terrible), blood draws, shots, etc. I completely wrestled with God over this, Why couldn't he just be allowed to die peacefully, why NOW more shots?  Over the next few weeks Derek and I would have to give Alex these shots and we would have more clinic appts so his blood levels could be tested.  Once his levels were at a good place he was able to stop the shots and take pills which was much better.  Alex started to feel weaker and experience some pain as time went on and since he never really liked taking pain medicine as his parents we were struggling with ways to keep him comfortable.  I remember praying one night for God to take his pain away, begging him again to not allow Alex to suffer.  Almost immediately, Alex started throwing up.  But then something strange happened.  After he got sick he said he felt better and the pain was gone.  This continued off and on, Alex would be laying next to me seemingly ok, he would get sick and then he would sigh and said he felt better.  I asked Alex if he had to endure anything what was easier for him - the getting sick part or having the pain and not getting sick.  He literally said he would rather throw up then have the pain he was having.

The throwing up got worse and ultimately we ended up at the Adler hospice center.  They worked hard to get Alex feeling comfortable and to slow down the sickness.  I remember one of the ladies there, she was either a nurse or PA, not sure as a lot of those kind of details are a blur but I remember her telling us that they believed Alex was bleeding internally.  They didn't know how long he would have but then she said something that will always stick with me...that this would be a very peaceful way to pass.  As scared as Derek and I were about what was happening with our son and about how much time we had left, I was so thankful to hear that he wouldn't suffer.

Over the last year I have replayed everything that we went through in those final days, weeks, months.  I have thought about the Fire Rescue and EMT teams that came to our house the night before Alex passed - how amazing the team was with our son and with us, about our church Pastors who made multiple trips to our home to be with us praying with us and over us, I have thought about the time I was able to be at home with my family, about the trips we were able to take, about the conversations I was able to have with my son, and about the time I spent in prayer during those quiet hours of the night.  From the time Alex went into Hospice care he told us he just wanted to be home, he wanted to be in his own bed and wanted us to be there with him.  As the days passed at the Adler facility and as comfortable as Derek and I were there with the help of the staff, we knew Alex just wanted to go home.  When it seemed as though he was comfortable enough, we decided to bring our boy home.  It was a Sunday  morning when Alex passed away...I got to lay in bed with him the night before and was able to just hold my boy.  Derek laid on the floor beside us and when we woke up the morning of his passing we knew something wasn't right.  Alex seemed to be sleeping but his breathing was definitely labored.  Derek and I prayed together, we prayed and then we told Alex that it was ok for him to go if he was ready.  Alex passed away not long after with Derek and I by his side.  Together we brought our baby boy into this world and together we held his hand as he too quickly left it.

I don't share this for sympathy but rather to share how and why we say that we have hope.  That blood clot, which I initially was so angry and so upset with God over, turned out to be God's answer to our prayers.  I know this isn't everyone's story and that not all prayers are answered, believe me, I get that.  I have no idea why some prayers are answered the way we hope and others are not...why some children are healed but others are not...why some children suffer and others do not...why some parents get to say goodbye and yet some do not.  But I do know without a doubt that there IS certainly a bigger purpose for everything we go through and that there are definitely answers for our questions, we just may not always be given the answers while we are here on earth. 

We cannot believe Alex isn't here and that he isn't coming back.  While the fear of losing our son was always present and kind of lingered over us even when he seemingly was doing well, we never actually thought he wouldn't survive.  He was so healthy, so strong. His cancer had a fairly good prognosis.  How is he not here?  While Derek and I are heartbroken beyond words and it now feels as though we live half here on earth and half in heaven...we still have hope.  I am forever thankful for that hope and that it will never ever leave us.

Below is the video that was played at Alex's Celebration of Life.  I hope that you will take time to watch it and remember our sweet boy today and everyday.  I can only imagine what happiness and beauty he is experiencing up in heaven and long so badly for us all to get there!  For each day that we are left here on earth I know there must still be work for us to do, Alex's work has been done.  We hope we will continue to make our boy proud, living our lives to honor him as best as we can.

For those who have followed this website and our updates, thank you.  It truly has meant so much to me to be able to post here and share with you a little about our sweet Alex.  Thank you for your prayers, for your warm wishes, for coming alongside us.  We love and appreciate you all more than words could ever express.

With Faith, Hope, and Love Always,
The Green Family 

https://vimeo.com/170675240 




  


Sunday, April 24th 2016:  For weeks I have been struggling with finding the right words for this post, but I have come to realize as time continues to pass by – that there are no right or wrong words and all that I can do is to continue to write what is on my heart and in my mind with where we are for now.

A few weeks ago, we learned that Alex's cancer was no longer growing slowly like it had always been, but instead had started growing a little faster.  The second type of immunotherapy treatment trial we were on did not seem to be working and his tumors had grown more than the "ok" amount for this drug.  We also learned that because this particular immunotherapy takes a long time to leave the system and since most trials have a specified period of time required before you can be eligible, our doctors had concerns with where Alex would be by the time the drug left his system.  It was suggested that we move Alex to Hospice care so that is currently where we are...

Alex continues to do great, in the spirit of who he is and who he always has been, he is nothing short of amazing.  Several months ago Alex had been indicating to Derek and I that he didn't want to do chemo anymore...it made him sicker than the cancer itself and while many would work for a short time...ultimately the cancer would just come back.  We collectively decided we would focus on immunotherapy treatments as they wouldn't hopefully be as harsh as the chemotherapies, Alex was reluctant but agreed.  I know in my heart that he wasn't agreeing to more treatments for himself, that he was doing it solely for us.  Alex has made peace with what it would be like to go to Heaven, for a while now he has even told us that he would rather die than to go through all of this...he has endured so, so much and he has always bravely done whatever we have asked him to go through over the years...I think one of the worst things you can hear as a parent is your child tell you they want to die.  When we talked with Alex about this last treatment not working and that we didn't know if we would have any other options for a while, he said that he was done.  He told us he didn't want to do anything else and then...he asked me if I was mad at him.  He asked if I was mad at him for 'giving up'.  In an instant, a wide arrange of emotions came over me but mostly anger and sadness...how could my beautiful child think in any way shape or form that he was giving up?  After 7 years of fighting and dealing with endless appointments, treatments, disappointment after disappointment...how could he feel like he was giving up?  I sat speechless for a few moments and then told my sweet Alex that there was no way I could ever be angry or disappointed at all and that in no way were we giving up, instead we were just giving up on medicine and redirecting our entire focus on God – we will NEVER give up on God – and we are never 'giving up'.  The feeling Alex expressed made me wonder if there is too much pressure on our kids to "not give up" and that for those who do pass away from the disease, they somehow feel as though they lost or that they weren't good enough and were defeated...this breaks my heart.  Our children are exactly that - children.  We ask a lot of them to go through these treatments and to keep fighting, we have asked Alex to endure more than I think I could ever endure as an adult.  Please know that I'm not saying in any way that we shouldn't be positive and encourage them to fight this beast called cancer...but perhaps we also need to be sensitive to the messages we send.

There is one particular picture of Alex that I have posted a few times on FB.  It is a simple picture of him kneeling on the ground with his back turned to the camera holding on to a gold cape with one simple word on the back of it – FIGHTER.  I love this picture for so many reasons.  I love it because it was a gift he amongst many other children facing cancer received at the Night of Golden Lights held in DC last September.  I love it because it shows that despite the fact he HAS to kneel and can't stand and despite the fact that his right hand was also paralyzed from treatment, that he tightly held on to both ends of the cape and proudly outstretched it for all to see.  I love it because he IS a FIGHTER and nothing less.  I love it because he always will be!

Derek and I also intentionally did not want to say anything about Alex being on Hospice care because we needed time to ourselves.  We knew that if we were to say anything, there would be an overwhelming amount of people who would want to DO something.  We have been incredibly blessed and have a great support system surrounding us.  If we were to ask for anything, it would just be continued prayers for Alex and our family.  We pray specifically for healing – miraculous healing of Alex's cancer and also the paralysis' – but also that if healing on earth is not in God's plan for us, then we just ask for God to not allow Alex to suffer and for us to be able to be together as a family in peace.
We have spent the last month doing amazing things...Alex got to fly a plane (thanks to my awesome work family), we took a long weekend trip to the Outer Banks (thanks to Healing Hearts Respite Foundation), and we took another long weekend trip for Alex's birthday to the National Wheelchair Basketball Tournament in Kentucky!  Alex recently received the "Rookie of the Year" award for the Prep Wheelchair Bball team and he was so excited about that (as he should be)...the team has been awesome to him and we are so thankful for the friends we have met both through his basketball and sled hockey teams.  We continue to do fun things here and there but most of all we are just enjoying spending this time together.
Alex has been feeling good overall and while he seems to get a little more tired than usual, he hasn't needed any of the supplies the hospice team had set up for him.  We just celebrated his 12th birthday which is crazy for me to even think I have a 12 year old!  I remember when Alex was 5 and was just diagnosed...we didn't know if he would live to see his 6th birthday...and here we are 7 years later.  I feel blessed and saddened at the same time.

God continues to show up in big ways for us and I know He is carrying us now.  Though we continue to struggle, I see the peace He offers and that which is surrounding us.  Though my heart is breaking and I can be overcome with deep sorrow, I know we are not alone in our sadness.  Our families' pain will not be in vain.  God is good and I know this with all my heart and soul.  I could not imagine being where we are now, at this point in our fight, WITHOUT God by our side.  God is my HOPE in what most might consider an otherwise hopeless situation, God is my LIGHT when the darkness suffocates everything else, God is LOVE when we need so desperately to know that we are loved.  Even if Alex goes to Heaven, my love for God will not change.  I have HOPE because I know our time on Earth is not the last of us and while I cannot fathom what it will be like to live life here without my sweet boy, I take comfort in knowing I WILL see him and hold him again.

Many of you know Alex's Army held a free event for the childhood cancer community earlier in the year.  We had Grammy Award Winning artist Laura Story come to speak, encourage, and share some of her testimony with us...one of the songs that we requested was one called, "Perfect Peace".  I love this song.  It perfectly describes the peace that is possible when we turn our troubles over to God, when we believe in his son Jesus Christ.  My life changed the moment I started believing...our familes' lives changed the moment we all started believing...we know what it's like to try to fight this fight without God and now to live life with Him by our side...we won't go back.  God is good and His plans are far greater than we will ever know.  I have a link to the song below, it brings me so much comfort and I hope that it might bring you comfort as well.

https://youtu.be/IKynh0Spy-Q

Please know that we are doing ok and just want to spend as much time as possible, together as a family.  Please continue to pray for Alex and for ALL kids fighting cancer, please pray for cures! 

With Faith, Hope, and Love Always,
The Green Family


February 18, 2016 - So yet again it has been a super long time since my last update, I am so sorry.  All has been going ok since our last post and we continue to focus on the present.  A lot has happened since our last update so I’ll try to recap as best as possible.  We weren’t able to do the high dose back in the Fall which we have mixed feelings about…we were a little relieved as we had a lot of stress about HDC treatment plan and how difficult it would have potentially been on Alex but we also of course were upset to learn from his PETscan that there was new tumor growth.  After this news, we became VERY hopeful and even excited about Alex being accepted (this was a much longer and way more emotional story but I’ll spare the details of that) into the Children’s Immunogen trial IMGN901 which we had helped petition for a few years back.  It took years to bring this drug to our kids and we were SO hopeful that THIS perhaps was God’s answer to our prayers for healing and would help cure Alex for good. Unfortunately, after the first few rounds of this treatment the first set of scans revealed that there was also new growth indicating the treatment wasn’t working.  To say that we were incredibly discouraged is an understatement…Derek and I were devastated and almost in shock.  We really thought we were SUPPOSED to be on this trial and that all of our other re-routes, twists, and turns had perhaps led us to this treatment for a reason.  It’s tough to constantly get your hopes up then have them crushed…its exhausting honestly.  At this point I truly feel as though we cannot put our hopes in these treatments…the only HOPE we have is our God.  He will lead us wherever He wants us to go and we will trust and hope our God alone. 

To date, we currently are on an immunotherapy trial which does not contain chemo at all so Alex has been feeling great!  He has been going to school for the most part, only missing days here and there for treatments and blood draws.  We have our first set of scans on February 29th, so please keep us all in your prayers for good news.  He still has the pesky toe wound but its definitely on its way to healing.  Slowly but surely the wound has been closing and we are hopeful that it will close completely before summer so that he can do some swimming this summer since he wasn’t able to last summer.

We have been keeping busy with sports, we must be crazy but both boys are currently playing 2 sports right now!  We are super busy with that, but it’s a good kind of busyJ  Alex is playing sled hockey and just started playing wheelchair basketball as well which he loves!  Both Sled Hockey and Basketball travel so we have had many weekends on the road!  Jacob is playing on 2 different basketball teams and also loves them – he is becoming quite the all-star athlete!  And little Caitlyn is happy just going with the flow (for the most part) and watching her brothers do their thing.  The boys love having a little sister and she is pretty fond of them as well!  She has started saying a few words…we figured out that Jacob is “Bub” and Alex is something like “Aaagh”…something like thatJ  She is a sweetie though and loves her brothers very much!

Alex’s Army has been very busy and hosted our first Faith, Hope, Love event back in January.  It was truly amazing and was such a blessing to all who were able to attend.  Our Faith, Hope, Love event is a free support event for families impacted by Childhood Cancer and we hope to do this every year.  This year included Grammy Award Winning Christian Music Artist Laura Story who was such a blessing and encouraged the group through her story and songs.  You can check out pictures on our website (www.alexsarmyccf.org). It was amazing for me to see how God is using Alex’s Army and to hear what this event meant to those who came.  Laura Story and her team were truly wonderful and the whole weekend was wonderful!  In more Alex’s Army news, we have some fundraisers coming up and are even hosting our 2nd Kids Helping Kids Care Package Donation Drive during the month of March which helps us provide care packages to the local area hospitals.  Check out our website for info on our fundraising events as well!

Thank you all for your constant love and support of our family.  Thank you for keeping us all in your prayers as we approach these next scans Feb. 29th.


With Faith, Hope, and Love Always,

The Green Family   

October 21, 2015:  I really need to get better at this updating thing…I am so sorry that it has been so long again.  Life is just so crazy it seems at times for us all, isn’t it?

So as usual a bunch has happened since my last update.  Alex’s toe went from clear of infection in July to him being diagnosed with yet another bone infection shortly after which meant another long regimen of IV antibiotics, an added wound vac for the pressure sore, no swimming the rest of the summer, more doctor’s appointments, and a once again delay on the high dose chemo/transplant plan.  Thankfully, the chemo Alex has been taking has still proved to be effective and his scans up until this point have continued to show slight improvement and stable in other areas.  In order to get the OK to do this high dose chemo w/stem cell transplant treatment, Alex needs to be as close to NED as possible and the chemo he is currently on has to prove that it’s still effective.  If the cancer starts to become resistant to the chemotherapy (as we all too well know it can be over time) then there is no reason to give him the higher dose because it wouldn’t be effective. 

Recently, the Doctors were able to determine based on a series of blood tests that the infection in the bone in his toe appears to be gone.  Alex was able to stop the IV antibiotics and because the wound on his toe was finally closing, he was also able to lose the wound vac (this was a great day for our tough dude!). 

So here we are again discussing moving forward with HDC w/SCT.  At this point, Alex will have a PETscan tomorrow (Thursday, Oct. 22) and we will meet with several doctors Monday morning.  As long as the PETscan results are good, then Alex will repeat some of the previous testing to make sure his body is healthy enough to handle this upcoming treatment.  We are looking at starting the week of November 2nd.

I think that for so long this treatment has been right around the corner but never really present and Alex was able to not think about it much.  Despite us talking to him about it many times, Alex had built up quite a bit of anxiety and fears that he kind of kept inside.  This has been such a long road for all of us, Alex was 5 when he was first diagnosed and back then Derek and I made the decisions for him.  We were always honest with him about what was happening no matter how hard it was for us at times to have these difficult discussions with him.  But over time, Alex has grown up.  He is 11 now, his coping skills are evolving and Derek and I are learning to give Alex more of a say on the decision making process.  This sounds like it should be easy to do, but I can assure you it’s not.  Especially when your 11 year old is telling you that he’s done; that he doesn’t want to do treatment anymore knowing fully what that could possibly mean.  These are discussions no parents should have to have with their children, yet many parents are having to face this reality all around us.  Children are making bucket lists, giving final wishes, saying their goodbyes, and having to face dying before their parents or even their grandparents’ do.  These are decisions that no 11 year old, no child at any age, should have to make - yet they are.  Just in the last week, Alex has really opened up and we have had many discussions about this treatment and his feelings on everything.  Through this process, we have received one of the biggest blessings that I could have ever asked for…our family has come to the point where we have peace knowing no matter what decision is made, we will now make it together – all of us – and that no matter what decision is made – we will get through it together.  Through Alex’s opening up and through our discussions, Alex knows that we support him no matter what he decides – he knows that his parents and his family “has his back”J  Recently, I was able to lean on a few other moms who have been there.  They’ve had the tough discussions, they’ve made some tough decisions, and each has walked a similar road. I am so blessed as a mom to have these other women to lean on for comfort, for reassurance, and for advice; I am so blessed by these women.

So, we are pressing on yet again.  Alex has recently changed his mind and is feeling better about the possible upcoming treatment.  We are still going to meet with the doctors and make sure all his questions are answered, make sure he knows what other options there may be, and make sure he feels as comfortable as he can with our next step.

We ask for your prayers for unity, continued peace, and as always healing.  We also ask for prayers for Jacob as we keep pressing on…Jacob won’t be allowed to visit Alex during this time he is in the hospital should we choose that route and I know that will be difficult for him also.  Despite the normal brotherly fighting, Jacob is such a sweet kind and loving brother who has his own worries and fears about everything that’s happening.  We thank you all so much for your prayers, they mean so much to us.

On another note, we have been busy busy bees with Alex’s Army Childhood Cancer Foundation.  We had our 7th Annual Alex’s Walk N Roll Toward Wellness 5K (and we added a Fun Run) this year and are happy to announce that at this event, Alex’s Army presented the Children’s Oncology Group with a check in the amount of $35,000.00 to be used for Wilms Tumor Research!  This was a super proud, incredibly humbling, and just wonderful moment for the Foundation, for our supporters, and on a personal level – for our family.  THIS is what we want to do – THIS is what we need to do – to help fund research for newer treatments to help make a difference in the lives of children facing this devastating disease.  We pray for cures for all cancers and that we will see this prayer answered in our lifetime!  Below are a few pictures:

                                

Check out our website for announcements for our next upcoming fundraising events for Alex’s Army!

www.alexsarmyccf.org

In other news, Alex was recently celebrated as one of The Sweet Julia Grace Foundation's Raindancer Children (www.sweetjuliagracefoundation.org) .  Through months of planning and collaboration with so many amazing people and groups, SJGF celebrated Alex and our family through a celebration party held after our annual walk.  I wish I could relive that day over and over.  Our home was filled with our family and the SJGF volunteers who surprised Alex with a bunch of surprises that day.  They basically made over his bedroom!  The gifts included a desk with his own swivel chair, a new bed and matching dresser (both black to match his Steelers' themed room of course), several new Steelers' fatheads to the walls, framed his Roethlisberger jersey, framed his Beal jersey which Alex gave to Jacob (so sweet), the list goes on and on but basically transformed his room to more of a pre-teen room.  They transformed our back room to a beautiful office space for Alex's Army and for Derek's Real Estate -- I was completely caught off guard by this and honestly a little embarrassed because in knowing they were coming I frantically was throwing things in this back room to hide and "clean-up".  The office space is organized way better than I could ever imagine and brings me such joy when I sit back there to work now.  They also did a room makeover for Jacob to include a new bed (actually his mattress was on the floor so this was awesome for him!), a matching dresser, some new decals for the walls and a new Adam Jones Poster for his wall.  All of these gifts were so amazing but the last gift for Alex completely left us speechless.  The Sweet Julia Grace Foundation gave Alex and All-Terrain ActionTrak Wheelchair that is more like a tank than anything else!  This thing is awesome and gives him so much more freedom to move around our yard and get outside and play like he used to.  I wish everyone who has to rely on a wheelchair to get around could have access to one of these chairs.  The first thing Alex did when he got in it was we to the very back of the yard - something he had never done.  A few nights later we were able to take a walk together as a family down to the pond in our neighborhood and Alex was able to cross the creek all by himself!!!  He hadn't even seen the pond yet and hadn't even met some of the kids in the neighborhood...the gift was beyond what we could ever imagine and we are so thankful for SJGF and all their supporters and volunteers.  Below are a few pictures of Alex's celebration party that day.
 
       

Thank you all so much again for your love and support – we are so blessed to be surrounded by so many wonderful people who have just embraced Alex and our family through this.  We truly could never say thank you enough.

With Faith, Hope, and Love Always,

The Green Family

 



July 24, 2015 – I cannot believe it’s been so long since my last update here and so many things have happened since then.  When I last wrote, we were getting settled into our new home, and the kids had birthday celebrations coming up.  Alex had scans which we are happy to report are continuing to look good!  He is still taking chemo and feeling ok…we have been dealing with another issue however that is going to postpone the plan for High Dose chemo w/stem cell transplant that we were going to do over the summer.  

Several months back Alex had gotten a pretty bad pressure sore on his foot.  We think it was from a new pair of shoes that he had gotten for Christmas and formed over time.  For awhile we just thought it was a callous or possibly even a sprained toe, since he cannot feel it was hard to know what was going on. Eventually though a blister formed and pretty much immediately opened and we realized it was a pressure sore that was actually very deep.  We started seeing various specialists for this and even more when a culture revealed he had also a staph infection and 1 other type of infection in his foot.  Long story and MANY doctors’ appointments and scans for the foot later, things are looking better.  Alex was started on IV antibiotics which he was able to get at home every 8 hours.  We had a home health nurse come to our house to teach Derek and I how to administer the antibiotics.  This wasn’t painful or anything for Alex as it just uses his port which was already accessed, it was just a bummer because it meant no swimming while on vacation and no pool.  Alex loves to swim and we were hoping for some relaxing days before the HDC w/transplant.

Things are looking much better now though and we learned upon return from our vacation that the infections are cleared and just yesterday at Alex’s chemo appointment they told him no more IV antibiotics AND no more shots to bring up counts!  For Alex (and us all really) this was awesome news.  He still can’t go in the water but we are hopeful perhaps after next weeks’ round of appointments we may get the go ahead for that too.  

The plan as of right now is to scan in about 2-3 weeks and start testing again to prepare for the High Dose Chemo and transplant.  This puts us probably around early to mid-August for transplant but will keep you posted on that.  We will surely needs lots of big prayers around this time.

Our home is coming along and we are so happy!  We are still getting things unpacked here and there – all that fun stuff.  We have been so blessed as friends of ours (LOTS of different friends) came to us wanting to help us with specific ideas they had and it has just been amazing the outpouring of love and generosity we have received.  Edge Concrete, the company Derek’s dad works for, helped us tremendously by putting in parking spot and sidewalk that goes to the basement entrance which makes it a lot easier for Alex to get from the van to the house and vice versa on his own.  It gives him more independence which is always good, I think he gets a little depressed feeling like he has to rely on other people for things that he wants to do on his own…Derek gave Alex his own set of keys also so that Alex can let himself in when we get home.  We all go through that entrance anyway but I think that was an awesome idea he had which makes Alex feel all the more independent! 

The Sweet Julia Grace Foundation reached out to me months back about making Alex one of their Rain Dancer children.  They have been such a blessing.  Since they contacted me, there has just been this outpouring of love and other people wanting to help us.  It is a little overwhelming honestly and kind of awkward.  It’s hard to describe…I don’t know why we feel awkward when people want to help us…I think it’s probably normal human nature, maybe pride, I don’t know.  There are several companies and organizations who have gotten involved with this.  Community Landscape Services and Broad Run Nursery came out and landscaped our entire front yard!  We have beautiful bushes and flowers and two new trees!  Jay, our friend at Ellie’s Hats, reached out to a friend of his at JK General Contracting who came and put new concrete around the boys basketball hoop and along with posts and netting to help so that the ball wasn’t constantly going down the hill (living on the mountain gives a whole other meaning when the ball goes down the hill in the woods!).  Since then, the boys have been out there constantly playing which is so awesome to see.  Alex being limited with getting around in his wheelchair, he hasn’t really been getting outside much so this is definitely helpful.

It’s awesome, exciting, humbling, incredibly helpful, and just unbelievable!  We bought our home knowing that it was a fixer upper and that we would need to do work to it – it has been such a blessing to see this home God provided for us, one that we waited so long for, and now above and beyond anything we could have hoped for with people he is putting in our lives.  We will certainly post pictures and updates on all of this.  In the meantime, a million heartfelt thanks to everyone for your incredible support of our family.

Alex graduated 5th grade this year and we are so proud of him and Jacob for all the hard work they put in this school year.  There were LOTS of festivities that came with the 5th grade end of school year, field trips to middle school, a 5th Grade luau (amazing), a 5th grade picnic, and the 5th grade graduation ceremony.  At the 5th grade graduation ceremony, there was a moment that I will never forget and one I am sure Alex won’t forget either.  The PE teacher who is well loved by every single student and family I am sure at our school, got up to present an award.  He stated how he didn’t really ever present a 5th grade award before but that there was a student this year that he had watched over the years who deserved the PE award.  While other kids would be sitting out for various reasons, this child would be doing whatever he could do just to participate.  And not only would he participate, he was always so kind to others helping the other kids when he could.  When the teacher announced that it was Alex and when he said I am sure you would all agree, all the parents stood up and clapped…it was a very emotional moment for Derek and I and a pretty proud moment for Alex – he didn’t realize the parents were all standing up which was probably good as knowing him he probably would have been a little embarrassed.  I wish I captured it on video…it was incredibly special.  Alex will miss Gravely immensely, from the moment we walked into that school I knew it was special.  We had SUCH an amazing experience there and are SO thankful to the staff and families who all contributed to making sure Alex was always well looked after…we always knew he was safe there and that is a peace of mind that is probably incredibly hard to have when your child has serious medical concerns…we are so thankful for that.  I feel as though many of the staff and some of these families’ have become part of our family.

So now Alex is on to Middle School – he is a little nervous but mostly excited I think.  He already knows his way around the school and feels pretty comfortable.  The staff we have met so far seem great also and one in particular who has been helping us with the transition has been so incredibly sweet.  She has gone out of her way to make sure Alex has everything he needs to feel comfortable and to ease his transition. 

Jacob will be going up the ramp to the 3rd-5th grade floor next year!  OMG – while it’s hard to believe Alex will be in Middle School, it’s even harder to believe Jacob could possibly be going into 3rd!  I am so excited for tomorrow as we will be picking Jacob up from a week long camp through Special Love.  Special Love is an amazing non-profit who provides camp experience for both children battling cancer and their siblings.  This is Jacob’s first time away from home and while he was nervous to go, he has been LOVING camp.  I cant wait to hug him tomorrow and hear all about his week!  Alex is scheduled to go to the patient camp in August, but that will depend on the scans and timing of HDC w/transplant…hoping he can go again this year as he truly loved it last year but know that timing is so important with treatment and that will take priority for certain.

Finally, little miss Caitlyn will be turning 1 here in August!!!  Time goes by way too fast – people tell us this right?  So why does it always seem shocking when we see it???  Maybe its because now that the boys are older I know how fast it will go with her too and that saddens me…I am procrastinating planning her 1st bday because while as fun as it is and believe me I LOVE planning bday parties…I just do not want her to turn 1!  I don’t think I can stop it from coming though so…let the planning beginJ

In Alex’s Army news, we have our 7th Annual Alex’s Walk N Roll Toward Wellness 5K event coming up so if you hadn’t checked our Foundation website in awhile, be sure to do that www.alexsarmyccf.org .  We added a Fun Run this year which is exciting tooJ  We also are in the beginning stages of planning our first Faith Hope and Love Concert Event for families and children affected by Childhood Cancer.  This is going to be an amazing uplifting experience and I am so excited to see this event come to light!  We know how awesome our God truly is and we are excited to share His message of Faith Hope and Love to other families affected by childhood cancer. 

I will try to keep you posted better on all that’s going on…things just seem to get so incredibly busy and time goes by too fast J  We thank you all as always for your prayers.

With Faith, Hope, and Love Always,

The Green Family

Wednesday, April 15th:  We have been busy, busy, busy, around the Green household(s) lately (yes pluralJ).  We recently have moved into our new home in Haymarket and are SO happy!  Our home is on Bull Run Mountain and is exactly what we were hoping for…there is some work that we have been doing on the new house as it was vacant for some time but we are just thankful for the timing and perfectness of this new home for us!  We have been busy cleaning out our apartment and getting moved and settled into our new place!  I have been busy painting the kids bedrooms (guess whose room is Steelers Gold/Black and guess whose is lavenderJ).  I always enjoy painting (even after another unnamed kiddo changes his mind as to the color of the paint after the first go around was done…lol).  The kids are very happy and my heart just feels full knowing that we have found a home that will be ours for a VERY long time!   

The boys LOVE the new house and both decided to have their upcoming bday parties there.  It made my heart smile to see their excitement and to know that they are also proud of our new home, enough so to want to change from a paintball party for one and a rebounderz party for another to bday parties at home!  So incredibly blessed!

Things have been going pretty well, Alex has finished the 6 rounds of chemo and ended up tolerating it pretty well.  We have scans coming up this Friday at DC Children’s.  We aren’t sure what the recommended plan will be and are just trusting solely in God’s plan at this point.  There are a few directions we could go depending on what the scans show so please pray for peace, comfort, and wisdom as we proceed.  Alex has been mentally kind of tired and down lately…we are working hard to keep him motivated and in the fighting spirit…we long for him to just be able to be happy!   We recently have noticed that his hand is continuing to show improvement which is AWESOME!  While his hand is still not close to working as it used to, he has regained new movement in his thumb and has shown better strength while gripping our fingers!  We even put a hockey stick in his hand last night to see how well he could grip that on his own and for the first time he could hold on to it without dropping it!  (I event had him hit me a few times to see if he could maintain the grip while the stick was hitting something – it was funny and yes he was able to hold on!).  We pray for continued improvement there!  There is no limit as to what God and the power of prayer can do, we truly believe this.  

In Alex’s Army news:) we are excited to hold our first Golf Tournament to be held Tuesday, May 12th at the Piedmont Country Club in Haymarket.  Registration is open and live on our website (www.alexsarmyccf.org) - there is also a flyer that you can download and print out with contact info for the tournament, please feel free to print this out and share with all your golfing (and even non-golfing) friendsJ  We hope to see you out there! 

Thank you all for your support and prayers as always, please pray for our upcoming scans.

With Faith, Hope, and Love Always,
The Green Family

Tuesday, March 24 2015:  Things have been going ok lately…just ok…I try to constantly focus on today and to not think ahead but that can be hard to do at times.  Today is a Gift…it’s a great reminder and 4 little words that I have been using a lot lately when I find my fears or worries start to consume me…I repeat these words in my head and focus on the present.  Today, Alex is here…Today, our family is together…Today, is a good day.  When I think of those positives, I can keep going…but I have to admit there are many days where it is really hard. 

Recently, we all have been going through some of the more difficult times emotionally.  Alex’s first round of chemo was rough, he was sick, throwing up a lot, AND on top of everything else his port line must’ve had a small leak because after his first round of chemo he ended up with a very painful chemo burn…we had never experienced this before and thank goodness we haven’t because it’s horrible!  Thankfully it was only a small one because the horror stories we heard about how bad they can potentially be were incredibly scary.  His was painful and got fairly red but that was all…unfortunately what that meant was that we had to have another surgery (#17 – but who’s counting) to remove this port and to insert a new one.  Since the surgery the new port has been working well and he has (as of today) completed 4 rounds of treatment.  The other rounds (following the first) haven’t been as bad and he has been feeling pretty good overall. 

Alex’s hair did fall out again despite our prayers for him to keep his curly blonde locks, I know God has other plans sometimes.  However, Alex being in 5th grade and 10 (almost 11) is pretty self-conscious this time around and was very upset about his hair falling out.  Our friend Jay from Ellie’s Hats came by and delivered a few new hats to him which was very nice.  Our amazing school and the staff came up with a Hats off to 5th Grade spirit idea to allow other 5th graders to wear hats and so Alex wouldn’t be singled out in that aspect.  All of these things are amazing and helpful and we are so thankful for them.  But it is very hard for Alex still and he hates the fact that he is bald.  At times, it seems nothing we can say helps and as a parent that is incredibly hard.  He is so incredibly handsome, with or without hair, and once again I find myself wishing he could see himself as we all see him.

Emotionally Alex is down right now…we had a scare just this week where we thought perhaps the cancer was growing.  Thankfully it turned out to be something of much less concern however it was a rough emotional and intense day to say the least.  Alex is very aware of how cancer works and how quickly it can rear its ugly head…I hate that he has to deal with those fears.  Even when we talk about getting rid of the cancer, he quickly reminds us that it can just come back again…I hate that he is in this mindset and as positive as we try to remain, there is definitely a toll that all of this certainly takes on the families battling this beast. 
I took this picture of Alex while at our appointment Monday…this was during the “scare” day.  Alex was playing on his phone and I just couldn’t stop watching him.  Here we were in the office waiting for the Oncologist to tell us the results of the x-ray to see if there was a new growth or possibly something else and I just couldn’t stop looking at my handsome sweet boy and thinking to myself how I love everything about him, every tiny freckle on his face, his sweet smile, his sparkling baby blue eyes, his laugh, his kind and sensitive soul, his determinationJ…everything about him.  I want to imprint my brain with all of these things so I never forget them!  Sometimes I cannot believe this is our life…its nothing as I imagined and occasionally my mind briefly drifts into the “what-ifs” of where we might be had none of this happened…but I don’t let myself stay there long…it’s too overwhelming and nothing good ever comes from it.  Instead I bring myself back to the encouragement and solace I find in the 4 simple words, “Today is a Gift”.  There is a purpose for this pain and we will allow God to lead us through whatever comes our way.  We can never forget - or as a friend so wisely says, we can never ‘unknow’ - what we now know about childhood cancer.  Our lives are changed forever and we will fight every single day to do our part to make a difference so that one day, no parents will have to hear the words, “Your child has cancer”.
To end on a more positive note, Alex has been going to school and even was playing in his elementary school’s basketball club which he absolutely loved!  His team finished the season in 2nd place which was pretty darn awesome!  You can imagine how proud this mama was of him…it was hard for him to get himself up and down the court having to push his wheelchair…and with his right hand not as coordinated and strong still as his left it was even harder for him to catch the ball let alone shoot…but when I went to one of the games and saw my boy playing defense as he would say, “like a boss”, I couldn’t help but get teary eyed and just smile.  He would be exhausted following the games but it never stopped him, his determination is one of his most admirable traits.  He was worried at the start of the club season, being the only kid in a wheelchair, and thinking kids would laugh at him…but oh how wrong he was!  I SO wish he could see himself as so many others see him! 
It is my understanding that we will have scans at the end of our 6 rounds which should be in about 2 weeks.  Thank you as always for listening and for keeping us in your thoughts and prayers.

With Faith, Hope, and Love Always,

The Green Family 

Thursday, February 26, 2015:  Sorry for the delay, things have been a little crazy.  The PETscan that was scheduled for Thursday Feb 5th ended up being rescheduled because the machine broke down (ugh).  It was delayed until the week after and we have been trying to figure out a good plan (or another plan at least) after finding the results of the PETscan.  So the PET revealed a few more areas of concern...there is a 12X23 nodule in the mediastinum which is in the abdomen and is part of the lymph system...Wilms tumor is known to go there sometimes so while we do not know for certain it is thought to most likely be wilms.  There are also a few very tiny spots in the left lung now too which do not look like wilms but this could be because they are so small and not yet defined.  We visited a few ideas for treatment and after much discussion have decided on what we and the oncologist feels is the best plan.  We have decided to go back to 2 of the original chemotherapy drugs that Alex had when he was first diagnosed, they are vinichristine and dactinomyacin.  Usually oncologists will say the reason they cannot use the same drugs is because the cancer grows smart and builds up a tolerance/immunity to the drug over time.  However, since it has been 5+ years since Alex has had these two drugs AND since they worked so well the first time (based upon the fact that he was in remission for 2 years), we are hopeful that they will be effective again. 

So, Alex will start chemo tomorrow morning.  He is handling it well...he was very mature and totally ok when we talked to him about it.  He is most nervous about the likeliness of losing his hair again and how his friends will perceive that.  I know they will embrace him as they always do, we have been so blessed in that way, but one thing he said was that he just wouldn't go to school until his hair grew back :(...we will work through this as we always do but asking for prayers for the start of this new (yet old) treatment and for Alex's hair to be as resilient as he is and to hold on strong!

This weekend we are holding our first ever Battle of the Bands event at Ned Devines in Herndon.  We hope to see you all there and are thankful that the weather actually is looking pretty clear for the day of the event! 

Sorry again this is another short posting...we appreciate the prayers for Alex and our family.  I've lost count of what 'plan' we are on for treatment but honestly I'm not sure if it matters.  We are nervous about this upcoming treatment and praying Alex's body will continue to tolerate it and that the chemo will do its job to get rid of this horrible, horrible disease.  Trusting in God always, no matter what.

With Faith, Hope, and Love Always,
The Green Family

Tuesday, February 3, 2015:
  I apologize in advance for the short update.  We learned yesterday that there is another new spot in Alex’s right lung.  It is small and slow-growing but there.  The other spots that have been treated with the cryoablation procedures look like scar tissue but they are hard to see and therefore know for sure if the cryoablation is effective…for these reasons the team feels it’s best for us to get another PETscan (which will take place this Thursday) to see if any of the previously treated spots illuminate at all (indicating cancerous activity) or if there is anything additional they aren’t seeing on the CTscan. 
We are saddened and a little discouraged but we are keeping our eyes on God.  This short sentence keeps popping up in my mind, “Today is a gift.”  How true that is for all of us.  The future is never guaranteed so we continue to focus on today, be thankful for today, and to treasure today.  We will post an update once we find the results of the PETscan.  Thank you all for your continued thoughts and prayers.
With Faith, Hope, and Love Always,
The Green Family
Friday, January 30, 2015:  Happy New Year (a little late) to everyone!  We've been quite busy over the last two months and it seems there is a lot on my mind for this update.  Alex had the second cryoablation procedure on Thursday Dec. 18th and to the best of our knowledge all went well.  The only downfall to that procedure was that we could not have the Botox injection done in his legs because there was a delay in the insurance approval (frustrating!)...we will plan to do the Botox at a later date TBD.  Since the procedure Alex has been feeling pretty good!  He has gotten a good appetite back (which always makes me personally feel better when I see him eating and smiling rather than not eating and laying around).  He and Jacob have been active in sled hockey again.  Alex just has to use this grip glove on his right hand in order to hold the stick which is hard because he's lost a lot of muscle mass in that arm but it works and he still enjoys playing. And now he has been involved in basketball club at school which he has ALWAYS wanted to play (you have to be 3rd-5th grade to try) but there was always some type of treatment or issue why he couldn't do it previous years so THIS year he finally was able to join and play, it is difficult for him getting up and down the court quickly, but you know he is smiling the entire time:)  We had a wonderful Christmas holiday and New Year and just really enjoyed the time off to spend together and hope that all of you had a wonderful Christmas as well!

We have had a little bit of a break after the cryoablation procedure and now we are back to scan time...Monday Alex and I will go to DC for scans and blood work.  We were told by our oncologist to stick around this time as he is hoping to have the results that day and to be able to go over them with us.  It will be a nerve wrecking day but I am hopeful.  Derek and I have decided to do a fast leading up to these scans in hopes that it will bring us both closer to God and so that perhaps in our obedience God will bless Alex with healing.  We have a friend who I've talked about on here before who recently experienced truly miraculous healing...there is an article that was written about her family and you can read it here:  http://www.oanow.com/news/opelika/article_5cbcc178-a436-11e4-b361-23d1d966e515.html Tara Viars is a part of a group of parents who all have children with Wilms, this group truly is our "Extended Family" and we have become close through our journeys. This is how I met Jen and her sweet family including Alex who passed away just a year ago.  Tara and I have recently connected as Windle and Alex seem to be at similar points in treatment.  She is an amazing Christian woman who I have learned a lot from...she always seems to send messages to me at just the right moments (including the Psalm 91 message - see October post below).  In hearing of Windles healing and in having a close friend who recently did the Daniel Fast and told me how great of an experience it was, Derek and I decided to do it as well, a few others have joined us and I am hopeful that in our obedience God will bless us and I will be able to draw closer to Him.  The fast is basically simple foods only (fruits, veggies, peanuts, beans, and water; No sugar, coffee, sodas, etc.) and lasts for 21 days.  I have gone 7 days so far and have to admit I wasn't sure how I would do it, I just knew that He would get me through.  For those who know me know how much I love food...especially not necessarily the healthiest of foods:)  But I'm doing it and am hopeful.  God is good and no matter what happens I trust in His plan for us...that doesn't take away though from that fact that I so hope that His plan aligns with what we want...

On another lighter note - Derek and I are jumping into a frozen lake in Reston next weekend to raise money for Camp Sunshine which is a Camp in Maine that provides a week away for families whose children have life-threatening illnesses.  We have not been previously but decided it was also a good way to raise awareness and join a team of other parents of children with cancer.  If you would like to donate to our team, here is the link:  http://csun.convio.net/site/TR/PolarBearPlunge/General?team_id=1050&pg=team&fr_id=1090.  I am excited and Alex thinks we are crazy...perhaps we are but its all for a good cause.  If anyone wants to stop by to watch us, laugh at us, cheer us on, or whatever - feel free to come by!

We have been busy with our nonprofit Alex's Army (we received official 501c3 status - yay) and we have some upcoming events which we are excited about...Derek has been busy planning a Battle of the Bands event for February 28th at Ned Devines in Herndon.  Checkout our website for information on that and other things we've been doing.  We were excited and VERY thankful for the donations we received leading up to the holidays for our holiday gift packages and were able to send packages to children (and a few siblings) we know who are battling or who have battled childhood cancer.  The packages included wobble bubble balls, stockings filled with stocking stuffer items including fuzzy socks, chocolate santas, coloring books, crayons, and knick knacks...they also included one of our Prayer Pillowcases specially picked out for each child as well as a $25.00 gift card for the parents.  We LOVED being able to do this and look forward to growing the amount that we can give back to other families through special things like this.  We are also working on a donation drive idea for a way that schools can donate items that go in our care packages that are taken to the local area hospitals for the children's Hem/Onc floors.  We rely greatly on donations for these programs though since we want a majority of our funds to go toward research.  There is information on our Alex's Army website: www.alexsarmyccf.org for how you can donate and or host a pillowcase sewing party or where to send fabric donations, etc.  I am very excited to see where 2015 takes Alex's Army!

So, with that said, we are doing well...Caitlyn is almost 6 months old and is LOVING her bigger brothers who completely love her right back!  I recently found out that Caitlyn's cord blood is a COMPLETE MATCH for Alex (just another reason why she is such an amazing blessing) and though we hope to never need it, we are thankful that God answered another prayer for us the way we hoped and that this is an option in his treatment.

Once again we are asking for BIG prayers for Alex's scans on Monday and for continued recovery in his hand.  Thank you all SO SO SO much for praying for us...I could never say thank you enough or tell you all how much it means to me having such a great support around us.

With Faith, Hope, and Love Always,
The Green Family


Wednesday, December 17, 2014:  Again it has been awhile since I've been able to update this site...my apologies.  For those who have Facebook please friend me or our Alex's Army nonprofit page as I am usually better at updating there.  Also, we are looking into opening a CarePages.com website since this GoDaddy account is pretty expensive to maintain.  We will renew this for one more month so that we can post to non-Facebook users our Carepages website once its up.  Sorry for the inconvenience while we are in the process of switching!

So the trial that Alex was on we learned last week was not working.  We are blessed and fortunate that the tumor he has left in his lung is growing slowly so we have a little bit of time right now to work with.  That said, the team wants to treat this spot (now that its bigger and they should be able to see it) with the cryoablation procedure he had last time.  That process seems to have killed the two other spots that were treated with this last time, our hopes is that this process will kill this last spot as well! 

We met with a neurologist a few weeks back to talk about Alex's hand and his legs to see what they had to say.  We were very happy to hear they felt Botox injections could be beneficial to treat the limited range of motion in Alex's legs, and they seemed optimistic about the slight movement he has regained in his right hand.  While this healing in his hand has been slow, its there.  He has recently been able to move 4 fingers and can just almost make a fist!  He has a ways to go but he has been working hard to get it there. 

So, with that said, tomorrow Alex will undergo surgery #16 to do the cryoablation to his lung and botox injections in his legs.  We are very guarded, nervous, and anxious; however, it seems as though if the cryoablation works fully, then Alex wouldn't have any visible tumorous cells in his body!!!  If the Botox injections work as well, then Alex could potentially start a more aggressive rehab again for his legs in an effort to try to walk again!  It would be through the grace of God and a huge Christmas present to us if Alex would be healed with these procedures!

As always we are asking for prayers, big bold prayers that Alex will suffer no further setbacks and that we can start healing together as a family from all of this!  Alex is nervous about tomorrow but is hanging in there and is being strong and brave as always. 

I am sorry this is short, I always have so much in my head that I want to say and write but time just seems to be getting harder and harder to find.  I love you all and am so grateful to everyone who takes the time to read my updates and pray for our sweet boy.  We feel you all holding and carrying our family through this and are eternally grateful.

With Faith, Hope, and Love Always,
The Green Family


Monday, November 3, 2014:  Feeling ok tonight after today's appointment and trying to focus on the positives:  1. We have gotten a spot in a phase 1 trial for an oral (pill) chemo axitinib.  This is an FDA approved pill for adult kidney cancer that is just now being tested in kids.  2. There were no new spots found so we have the one spot that didn't get the cryoablation procedure which has grown but has continued to grow slowly; the two spots that were treated with cryoablation appear larger but is thought to be scar tissue from the procedure itself however it's hard to know for certain until those areas continue to heal.  3. Alex is feeling good and is ok with doing an oral chemo...
So with those positives said he will have tests and scans this week to make sure he qualifies for the trial per the specifications.  He will start this trial Monday and we will be going back and forth to DC again to monitor during the first round which is 28 days, then we will rescan.  

We feel blessed that we still have options, and our oncologist has assured us that if there comes a time when he feels Alex wouldn't benefit from additional treatments, then he would be honest with us in that determination.  But right now he feels that we still have some options and we can only hope new meds will be developed soon that we can try in the future.

So, we are pressing on and are hopeful that we will find something to help kill Alex's cancer but while doing this we are also trying to balance that with giving him the best life possible. 

Alex is doing ok, he has been pretty upset about his hand which so far while it has regained some sensory it has not regained movement.  This has been such a devastating thing and we are still going through many emotions in coping with the injury...we can only hope and pray that the function will come back soon!

We had an amazing weekend this past weekend actually...for those who aren't on Facebook, Alex got to do something he has ALWAYS wanted to do...that is play in a tackle football game.  When he was 5 he had surgery to remove his kidney and at that point we decided we couldn't allow him to play tackle football.  He's played flag football, soccer, tball and baseball, but he's always asked to play tackle and we just always have said no.  Yesterday however, he was invited to his good friend Logan's semi-final tackle game and he dressed in the jersey the team gave him earlier in the season (he had gone to a few practices and helped coach).  We went to the fields (it was a super cold and windy day) and he was so excited because the coach had asked him if he would want to be a captain and call the coin toss.  Alex, his friend Logan, and the coaches son Ethan went out to the center of the field and did their thing while I took tons of pictures.  Alex stayed with the team on the sideline and we cheered as the Grizzlies played what turned out to be a very tough game.  The game was almost over and all of a sudden the coach yelled over to Alex to get his helmet on...Alex did it and went over to the coach who patted him on the shoulder pads and helmet and asked him if he was ready to go in.  I stood in absolute shock and asked a mom standing next to me if they were going to put Alex in...we both were completely surprised and I immediately lost it.  I tried as hard as I could to hold back my tears but there was no way that was going to happen.  The coach looked at me and asked if it was ok...all I could do was shake my head yes.  Alex didn't turn back to look, I'm sure he knew I was balling.  Instead, he went out to center field with his friend Logan by his side.  Before I could even process what was happening they hiked the ball and handed it off to Alex.  Logan pushed (he later said that was the biggest workout he's ever gotten) and ran as fast as he could as Alex carried the ball all the way to the endzone.  The other team was running and diving (probably a little dramatically but it didn't matter)...Alex was in heaven.  The team came around him and cheered as he had scored the only touchdown for the Grizzlies that game.  Alex told me that at that moment he felt normal, he felt like a real football player and he was happy.  We went that night to the team party and just felt this happiness in our hearts...I don't think I could stop smiling the rest of the evening.  Here is a link to a slideshow of a few of the pictures from that moment that our friend Jay with Ellie's Hats (www.ellieshats.org) put together for us: 
https://www.youtube.com/watch?v=MaAsE8vTwAY&feature=youtu.be

As a parent you want the best for your kids, you want to protect them, to fix their booboos, to give them the world.  Sometimes, and its this way for parents of kids battling cancer, we can't always do that.  We cant protect them, we cant fix the cancer, we cant always protect them;  but as a parent to watch your child get to do something that you know they have always longed to do...to get to watch them smile and for a moment watch them be truly happy...those moments are priceless and make life (no matter how hard) worth living.  Alex this morning on the way to DC said again, "I cant believe I got a touchdown yesterday"...he will always have that and NOTHING can take that away.  I am so thankful to Coach Drew, to Alex's friend Logan and his family, to the team, to everyone in our lives who has done just amazing things to help us continue to make wonderful memories for Alex and for our family during what has been the most difficult things we will probably ever go through.  There are so many people who have reached out to us and who continue to do so to just help...I am eternally grateful and if I say it a million times it still wont be enough. 

Last but not least, we have a fun holiday event for our nonprofit Alex's Army Childhood Cancer Foundation...if you are local and are able to join us we will be hosting a 'Holiday Shop for a Cure' event this Saturday, November 8th.  Details can be found on our events page.  IF you aren't local but would like to participate, most of our vendors have opened parties on their website and will donate a portion of the proceeds to Alex's Army.  Of course you can always donate directly to our nonprofit on our website which is www.alexsarmyccf.org(Note that the donations page on this site is for Alex's medical bills and expenses and not our foundation.)  We hope that you can join us to get a jump start on your holiday shopping for a good cause!  This is a family friendly event and we will have fun things for the kids to do while you shop, so be sure to stop on by!

Thank you for all the support and prayers.  We could never say thank you enough!

With Faith, Hope, and Love Always,
The Green Family
Friday, October 10, 2014:  Today is a day that we dread every year...5 years ago today was the day that our sweet little Alex was diagnosed with Stage IV cancer and our world was turned upside down.  It is a day that we will never forget and unfortunately October 10th is a date that will forever be haunted by the memory of that day.  

Our family has gone through so much over the course of these last 5 years and honestly there were times were I seriously didn't know if Alex would be with us to get to this point...there were several days and nights that I stood in the doorway of his room looking at an empty bed wondering if he would ever come home again...and while it is a HUGE amazing blessing and ONLY by the grace of God that we are here...I cant help but be angry today at several things that echo in my mind about Alex's cancer diagnosis.

When Alex was diagnosed, we were told that Wilms Tumor had a good prognosis and that it was the cancer to get IF you were to have to deal with pediatric cancer.  First of all that statement should NEVER besaid about ANY cancer...cancer sucks no matter what the prognosis...there is NO good kind of cancer.

5 years ago we learned that even stage IV wilms had a roughly 86% 5 year survival rate which to us sounded pretty good...at the time.  With that said, that means that Alex had an 86% chance of surviving 5 years...he had an 86% chance of surviving until he was 10 years old.  What the doesn't mean though is that he has an 86% chance of surviving and living to become an adult...to me it is misleading and while in the back of my head I had wanted to ask the question to clarify what exactly that meant '5 year survival', at the same time I never asked because I didn't really want to know. 

While we are incredibly blessed that Alex has done so well, it angers me that he has had to go through so much.  Alex is considered part of that 86% success rate, however, as you all know we are still fighting.  What you might not know, and what I hate to even write because in my mind it isn't real, but because Alex's cancer has returned so many times, as of right now it is no longer considered 'cureable' in the medical world.  We are hopeful that the right treatment will come up because we know we are held in God's hands.  We have peace with that because we trust in His plan, no matter what.  Alex has that same peace and as difficult as his life has been, it is an amazing thing when your 10 year old child holds these same truths in his heart and can show more strength and courage than most adults (atleast I know that's true for me) would have.  And once again, Alex continues to show this as we all work through yet another setback.

Alex had the cryoablation procedure done last week.  The good news is that the surgeon was able to get the larger nodule in his upper lung and one of the smaller nodules that he didn't know if he could see since it is small.  So right now there is only 1 small spot that we know of in the lower lobe of his right lung left.  We will scan again in about 2 weeks so see what things look like.  We are praying that there are no new spots and that the small spot that's left will become treatable either by further cryoablation or surgically.

The setback that happened that we are still dealing with and that seems so unreal...is that when Alex woke up he complained that he couldn't move/feel his right hand.  Once again, somehow, Alex has experienced paralysis, this time in his hand.  We have gone through so many emotions over the course of this last week and a half...at one point I definitely hit one of the lowest points that Ive been at in awhile.  How can the same person, let alone a child, get paralyzed twice???  Why is this all happening to Alex???  How much suffering and pain are we supposed to go through???  What are we supposed to do as his parents to take care of him, to make the best decisions to give him the best chance to not only survive but to also heal from yet another injury???  The anger sets in and I seriously had another yelling session with God not long ago...I am so sad that my son has had to endure so much.  The crazy thing is, a few mornings ago, when I was feeling so incredibly defeated and sad...I was helping Alex in the bathroom and he asked me what was wrong (as much as we try to hide it - I'm sure he could see it on my face).  I told him that I was just so sad that he had to deal with so much, that I was so sorry this happened to his hand.  His response, Mom you don't have to be sad, don't worry...I've been through a lot of stuff.  I've had cancer 4 times, I've had 16 surgeries, I can handle this too.  And he said it without even looking sad.  His prayers lately have changed too...his prayer the other night, "God, I pray that you will heal my hand, and hopefully heal my legs and cancer too.  But I know that if you want me to wait, then I will try to be patient.  But if you can hopefully do it quickly."  Unbelievable.  Alex has become so close with God, Alex is the one who reminds us at times to pray before we eat.  He is such an amazing kid...

I know that God has a greater purpose and I know that God is good.  How do I know this?  I want to share yet another God moment with you all:

When Alex was in surgery for this cryoablation procedure, I was in a family room feeding Caitlyn.  The room had various religious books including The Bible.  When I was done feeding her I picked up the Bible in hopes to read something encouraging.  Perhaps I didn't read far enough but honestly I didn't see anything...I was in the section where it talks about family lineage... I decided to go back out to the waiting room.  As soon as I sat down with Caitlyn my phone beeped indicating a Facebook message.  When I checked my phone I couldn't believe it...a friend who is also the mother of a Wilms tumor child sent me a message that read simply, "You all are in my prayers.  Psalm 91 will bless you."  I immediately pulled up Psalm 91 on my phone as I was not familiar with it and it was EXACTLY what I needed to hear.  Below is Psalm 91.  I should add that today when I was driving the boys to school, today on a day that I am sad reminded of the dreadful day Alex was diagnosed, I was behind a van that the license plate read Psalm 91 1.  Unbelievable...these are in no way coincidences.  These are God moments.

Psalm 91

Whoever dwells in the shelter    and from the deadly pestilence.He will cover you with his feathers,
    and under his wings you will find refuge;    his faithfulness will be your shieldYou will not fear    nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
    nor the plague that destroys at midday.
A thousand may fall at your side,
    ten thousand at your right hand,
    but it will not come near you.
You will only observe with your eyes
    and see the punishment of the wicked.
If you say, “The Lord is my refuge,”
    and you make the Most High your dwelling,
10 no harm    no disaster will come near your tent.
11 For he will command his angels    to guard you in all your ways;12 they will lift you up in their hands,
    so that you will not strike your foot against a stone.
13 You will tread on the lion and the cobra;
    you will trample the great lion and the serpent.
14 “Because he[b] loves me,” says the Lord, “I will rescue him;
    I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
    I will be with him in trouble,
    I will deliver him and honor him.
16 With long life I will satisfy him
    and show him my salvation.
While I don't understand at all why Alex has to go through all of this, I know that it isn't my place to try to understand.  Even if God could tell us the 'whys' and 'hows', could we really even comprehend the explanation? 

While medically Alex's cancer may be considered incurable, we still have hope.  We pray for God to cure Alex, for God to use our family to bring more people to Him, for GOOD to come out of all this...for our suffering to not go in vain.  I have hope because I know Jesus. That is the ONLY thing that keeps us going, that keeps us moving forward through every setback.   After my yelling session with God I immediately felt relief and comfort and since that moment I have been better.  I haven't felt defeated anymore, I know that we are not alone and that no matter what happens, we will ALL be healed one day no matter what our hurts are.  I wish I could explain this to unbelievers...I wish I could've understood this myself sooner than I have.  I look back at everything we've been through, I look back at my entire life and I SEE how God has been there, I see how things come together, I see the 'God moments' and for that I am thankful.  No matter what happens in our life, we will continue to be as obedient as we can realizing that we are only human and we will make mistakes but that is all OK.  I have struggled often with whether my worry and fear in losing my son makes me less faithful...I am learning that my worry and fears only make me human and God knows this...he knows my heart and even when I am yelling at Him with tears streaming down my face, He knows my heart and appreciates my honesty, He cherishes the time we set aside for Him, even if its when we are angry. 

Thank you for the continued prayers for Alex and our family.  We are praying for Alex's right hand to be healed completely...

With Faith, Hope, and Love Always,
The Green Family


Wednesday, September 17, 2014:  I am so sorry that its been so long since our last update.  It has been a little more difficult than I thought in juggling 3 kids (one being a newborn), starting our nonprofit, and planning our 5K event!  All of these huge blessings and I wouldn't trade any of it for anything!  So a lot has happened in the last month to update.

First off, unfortunately or fortunately, Alex was not able to do the high dose chemo w/stem cell transplant.  The week prior to the scheduled transplant date Alex had to go through a series of tests (PETscan, CTscan, EKG, Blood draws, Ultrasound, Renal test, Breathing and Heart tests, you name it he was doing it).  When he went to do the PETscan/CTscans they saw that one of the spots in his lungs had started growing again (as compared to the last scan).  We were surprised because in our minds this was the treatment that was going to kick it all for good...we were anticipating good results from the high dose chemo and were initially devastated when we learned because his spot was now growing showing resistance to this chemo, then the high dose chemo most likely wouldn't be as effective and would have put him through a lot for probably not great results. 

SO, for the last few weeks we have once again been waiting.  There were two potential spots in a Phase I trial a few weeks ago that were possibly going to open, however both of those spots were learned were taken/confirmed by the people who were holding them.  The Phase I trials only have 9 spots available in the entire US.  Its basically a lottery system and is done on the computer, when a trial opens there is a dedicated team at Children's on the computers applying for the openings.  This happens all over the country though.  When you get a spot, you have 1 week to confirm you will use it.  The two spots that we were waiting for were from hospitals who got the lottery spot but had not yet confirmed.  Unfortunately on the last day/hours that they had before their spot was going to be released into the lotto system again, they confirmed their spot therefore meaning we could not participate.  We are again this week 9/15 waiting for another trial to open and are hopeful to get a spot in this.  Meanwhile, Alex has been off treatment and while he is feeling great, his blonde hair is just starting to regrow again and he looks awesome, we know down inside is this awful thing that is most likely growing with each day that passes.  Alex was SO excited about not having to do the high dose chemo, he thought his cancer was gone and told some classmates this.  It was terrible when this came up in conversation and we had to tell him that no it wasn't gone, but we were just waiting to see what the next steps would be...I always want to write how much I hate cancer...but saying I hate cancer just doesn't seem to be strong enough words for how we all feel about this disease!

If we do not get a spot in this trial, we are going to do whats called Cryoablation. This is a procedure where they will go in with a biopsy like needle while guided by CT imaging and will freeze the tumor in the lung.  This will hopefully kill the tumor, OR at least it would slow down growth to help us buy time to get into a possible trial.  This is going to be scheduled for Sept. 29th, 30th, or Oct. 1st, we are just waiting to find out the date now. 

So that's whats been going on with Alex, he is feeling great so that's good.  Going to school, playing sled hockey, participating in all the awesome Pediatric Cancer Awareness events that we've been busy with, and just enjoying his new little sister!  He is very hands on and is SUCH an amazing big brother.  He has learned how to sing Caitlyn to sleep, and he posts pictures of her all the time on Instagram, he's so proud of her.  Both Jacob and Alex are great big brothers and are so patient and loving with her, both give her kisses constantly and not a day goes by where I don't hear them say, "Oh my gosh she's so cute!" :)  Makes my heart smile:)

Thank you to ALL who came out to our 6th Annual Alex's Walk N Roll Toward Wellness and who supported the birth of Alex's Army Childhood Cancer Foundation!  We raised just over $15,000.00 for Alex's Army and are VERY excited to start putting that money to work!  We made our first deliver to Fairfax Children's hospital with 30 care packages for patients there as well as a basket of toiletry items for parents.  We attended CureFest as a foundation this year and our mission and vision was VERY well received!  I was so excited about how many positive responses we got to our foundation.  Be sure to like our FB page www.facebook.com/alexsarmyccf as well as check out our website www.alexsarmyccf.org to stay tuned for upcoming events and updates on what we are doing to make a difference in the lives of children and families facing this awful disease.

Note that we are thinking about combining this website with our foundations website just for ease in making updates and to have all the info in one place...stay tuned as we will make a decision on that within the next month.

Once we have more information on Alex's next treatment plan I will update...please keep him in your prayers.  We appreciate all the prayers and support and could not get through this without them.

With Faith, Hope, and Love Always,
The Green Family

Friday, August 15, 2014:  Well things have been very busy in the Green household.  On Friday, August 8th, we welcomed our beautiful baby girl into this world.  Caitlyn Marie Green was born at 3:20 PM and was a healthy 8 lbs 10 oz and 21 inches long.  She has a lot of pretty light brown hair and everyone says she looks like Jacob but I see a little of both boys in her...and a lot of her Daddy:)  The boys have loved having her home and she has been smothered with lots of kisses and hugs!

All else is going well, Alex has had a little break from treatment other than the weekly CBC checks at the clinic.  He is VERY excited as he is going to a special camp next week for kids with cancer and we are all excited for him to have the opportunity to go!  I think it will be REALLY good for him to be able to spend time with other kids going through what he is going through and to just have a week away to make memories, create new experiences, and to just have fun!  The camp is done by Special Love and is staffed with NIH nurses and docs who are fully equipped to care for the kids while there.  I think Derek and I will be a little bit of a wreck I am sure, but Alex is super excited so we are excited for him!

Following camp Alex will be doing the high dose chemo treatment with stem cell rescue.  We are currently still awaiting results from the CBC they did on Jacob and the cord blood we banked from Caitlyn to see if either are a match.  Praying that one of them will be...praying it will be Caitlyn as by using the cord blood neither Jacob nor Caitlyn would have to ensure any further procedure.

Our Annual 5K event is coming up and I've added some more details on the Events page.  Please check it out.  Early registration is closing soon so be sure to register so you dont miss out!  If you'd like to make a donation toward our event but are unable to attend, you can mail checks to Alex's Army CCF at:

Alex's Army CCF
Subject line - Alex's 5K Walk N Roll Event
11250 Chatterly Loop #101
Manassas, VA 20109

Will update soon as we hear about the cord blood and CBC results.

For now I'll leave you with a picture of our sweet baby girl and her super proud older brothers:
                   


With Faith, Hope, and Love Always,
The Green Family


Thursday, July 24, 2014:  I am 2 for 2 in positive updates this week I think:)  So we spoke with one of Alex's Oncologists last night and found out what was discussed regarding treatment options at the tumor board meeting yesterday.  We got clarification on the plan I think which always makes us a little less anxious when we have a goal or endpoint in sight.  So Alex had 3 spots they were watching in his lungs, 1 of the spots they no longer see at all which is awesome of course.  The one larger spot that started off as a cyst then filled in during the last treatment plan but has been hollowing out on this chemo is now more like a smear shape and is no longer solid or round.  This could be scar tissue or mature cells (unlikely to grow) but they still want to treat it as it is visible and could be of concern.  The second smaller spot is round but is very small and is still responding to chemo which is always a positive.  While they do not feel a 4th round of chemo is going to get Alex to NED as we hoped, they do want to proceed with one more round (which Alex started today).  That said, he is not getting the Ifosfamide as this is the only chemo they were currently concerned with toxicity max as mentioned in my previous Saturday update.  Derek and I were really concerned when they mentioned max chemo doses as we thought they meant for all chemo drugs...this would be alarming as we would really be limited in our treatment options if this were the case.  SO, the toxicity issue they were referring to is only the Ifosfamide which is known to cause kidney damage.  Since Alex only has the one kidney, this is of concern and they have decided to stop the Ifosfamide for this round.  He is getting the other two chemo agents today and should be able to come home tomorrow!  So his 4 day inpatient round has quickly changed to an overnight which is wonderful!

After this round Alex will have a series of tests to make sure he is medically able to do the High Dose Therapy with Stem Cell Transplant.  Jacob will be tested to see if he is a match for Alex, and as soon as Caitlyn is born, her cord blood will be tested as well.  Oh yeah, did I mention Caitlyn should be here in about 2 weeks???  Time flies and while she has kind of taken the back burner to all this, we are SO excited and even though she hasn't arrived yet she has already become such a wonderful blessing to our family!  If Jacob or Caitlyn are not a match, then they would search for an outside donor just in case the stem cells they took from Alex do not take when they give them back, they want to have a backup.  This is very unlikely but good to have in place just in case.

Alex will have 3 weeks off and will be going to a camp for kids with cancer at the end of August just prior to his high dose therapy and stem cell transplant.  He should be feeling good and we are SO thankful that he will actually get to go.  This is going to be his first away from home camp and while it isn't too far he is THRILLED to be able to go!  When we signed him up we weren't in this treatment plan at all so there was definitely concern on our end that he might not be able to go.  We hated to tell him this as he is so looking forward to it.  We have prayed that the timing of this camp and the timing of Caitlyn's arrival would be such that Alex would be feeling well and wouldn't miss out on either...and it is looking like we are going to be blessed to have all of these prayers answered the way we had hoped.

So after camp Alex will have the high dose chemo and stem cell transplant treatment, that will be the last round of chemo for this treatment plan (and hopefully forever!!!).  The Oncologist thought it would be beneficial to add pinpoint radiation to the areas of these two spots at the end of treatment just to give an extra dose to try to make this go away forever.  SO Alex may miss the first few weeks of 5th grade, however, we are praying that this will be all and he will beat this beast once and for good!

Finally, REGISTRATION IS LIVE for our 6th Annual Alex's Walk-N-Roll Toward Wellness 5K event taking place Saturday, September 6th at Battlefield High School!  We are SO excited to announce at this years' event details for Alex's Army Childhood Cancer Foundation!  We hope that you will join us!  This is a family friendly event and will have moon bounces, face painting, snow cones, a stilt walker, and much, much more!  So even if you aren't interested in running in the 5K OR maybe just 1 or 2 family members will run, we hope the whole family, your friends, neighbors, etc. will join us in support of our cause which is to raise awareness and funding for Pediatric Cancer Research!!!

To stay updated on excited announcements for this event, please like our Event Facebook page at:
https://www.facebook.com/alexswalktowardwellness

Thank you so much as always for your prayers and support!

With Faith, Hope, and Love Always,
The Green Family

Wednesday, July 23, 2014:  This is a quick update regarding the bone marrow collection procedure yesterday.  First, I need to preface this by saying how amazing our God really is!  Time and time again, we pray for what WE want, we beg, we scream at times, we cry and don't understand when it feels like he isn't there or isn't answering us.  Even the most faithful Christians struggle with doubt and fears, even though the bible tells us time and time again, "Do Not Fear", we do.  And I've been struggling with my doubts and fears for some time and imagine I always will.  But I know without a doubt now that this is ok.  Its ok because we are only human.  We cannot possibly understand what God's plans are for us and we cannot possibly understand how they can be good when we are going through such pain and heartache in life.  But yesterday, I was reminded once again that God is way bigger than our own understanding, He is way more than any hardship we face...ANYTHING!

So with that said, yesterday morning we left the house at 4:30 AM to be at the hospital at 5:30 (ouch!).  We got to Children's and got checked in and all was well.  The stem cell transplant team had talked to us previously about the procedure taking around 3 hours and reminded us that they weren't optimistic about Alex having enough stem cells due to all the previously chemo/radiation and treatments he has had in the past.  Alex, mind you, was very happy about this procedure as he would be allowed to stay asleep for the entire thing.  He was incredibly anxious about the stem cell collection procedure (not through bone marrow) because it would have been about 6-8 hours and he would have a catheter in his leg OR neck and have to stay still the entire time.  Long story short, because the doctors were hoping to do the stem cell collection and were so doubtful that he had any good stem cells at all at this point, Derek and I were starting to get very worried and fearful that we weren't going to be able to finish this treatment plan (the high dose chemo w/stem cell rescue).  Knowing that we are running out of treatment options, fear over what was to come have been taking over once again.

So yesterday morning Alex went back to the operating room and we proceeded to the way too familiar surgical waiting area.  Jacob, Derek and I waited.  After about 1 1/2 hours we were surprised when the update board indicated that Alex was out of surgery.  Derek and I looked at each other and I feel a little ashamed to say that I thought for sure they just couldn't find anything.  However, we were shocked (probably just about shocked as the stem cell doctor who came out to talk to us) when she said that Alex had MORE THAN ENOUGH stem cells.  His stem cells were SO concentrated and SO packed in his bone marrow that they got more than they would need for him!!!  They didn't have to go into as many spots in his hips as they thought as his JOHN CENA CELLS :) were all concentrated exactly where they went in!  I literally had tears in my eyes as she told us all this...I think I said thank you to her a hundred times before she walked away.  I immediately was humbled and new once again that God is SO much bigger than us.  We prayed and prayed and prayed for the stem cell collection procedure that Alex was so anxious about...we were so upset and fearful when that didn't work.  And we, once again, now see that God's plan is greater.  I thanked God a million times yesterday and had a permanent smile on my face.  Derek too...and I talked to Alex about exactly all of this.  The boys are getting it...they are seeing the good and they are seeing the miracles that God is bringing to our family.  While our life is far from easy, while I know that we will still have doubts and fears, and while I know we will have hardships to face throughout life...I also know that God is ALWAYS with us...even when it may not seem so...and that while we may not understand or have faith enough to trust in everything we are going through...I know that that is ok!

With Faith, Hope, and Love Always,
The Green Family


Saturday, July 19, 2014:  So we got the results of Alex's scans Friday late afternoon.  The good news is that the chemo is still working and the spots in his lungs have continued to shrink/respond!  This is definitely good so we are focusing on this.  Of course things aren't always straightforward though.  So, the doctors are concerned as Alex is reaching a max point for how much chemo he can get without starting to experience kidney failure, heart issues, etc.  They will bring his case to tumor board next Wednesday to discuss the next steps.  Obviously it is ideal for Alex to be NED (No Evidence of Disease) prior to the high dose therapy.  I think there is question on whether doing a 4th round of chemo will get him to this point or not.  They are going to discuss whether to do a 4th round of chemo OR to possibly surgically remove (assuming the surgeons - who will be present in tumor board - will be able to see them) the spots and then do the high dose therapy. 

The other thing that is up in the air is the issue of whether Alex has sufficient stem cells or not.  Alex will be having a blood transfusion on Monday in order to prepare for the Bone Marrow Collection procedure on Tuesday.  The hope is that by collecting bone marrow, they might be able to get stem cells there.  The stem cell team is somewhat doubtful that Alex will have enough but we are going to try.  Another option would be that if they are able to get enough stem cells to the do the procedure, they will also need to collect extra in the case that the engraftment does not take.  The backup plan will be to test Alex's siblings as siblings have 25% of being a perfect match.  A related donor is less risky than and unrelated donor however both of these are more risky that using Alex's own stem cells.  SO, with that said, both Jacob and the cord blood from Caitlyn will be tested to see if either are a match.  I am one proud mama because when talking with Jacob about possibly having to get his blood drawn and when answering his questions about why, etc.  He literally was all for it!  Without hesitation he said, "I'll do it." He even said, "If both Caitlyn and I are a match, I want to be the one to do it."  I don't know if he'll get that choice or not but I was so proud and honestly a little surprised by his response!  What an awesome brother he is!

So at this point we are proceeding with the bone marrow collection procedure Tuesday and then will wait to hear from Alex's Oncologist Wednesday evening following tumor board.

In other exciting news:

*We are well on our way to making Alex's Army Childhood Cancer Foundation a real non-profit!  We aren't official yet, however, we do have a new facebook page:  www.facebook.com/alexsarmyccf  Be sure to check it out, like us, and share it with your friends/family, etc!

*Registration is almost open for our 6th Annual Walk-N-Roll Toward Wellness 5K event!  Check our events tab soon for registration details.  Early registration will end on August 19th and we can only guarantee t-shirt sizes for early registrants.  We will have lots to do other than the race so please plan on stopping by Battlefield High School in Haymarket on Saturday, Sept. 6th to check it out! 

*For those who missed the deadline for the Alex's Army shirts, we will be selling some at our walk event and eventually will have them available for sale on our Alex's Army website (in construction now).

*Finally, yesterday afternoon Alex got to pick up his very own handcycle bike from a grant he and several others on his Sled Shark Hockey team received from Athletes Helping Athletes and RoadRunner Sports in Falls Church, VA!  He was SO excited and raced around the store. We got to take the boys to a local track last night after dinner and for the first time in a few years now they got to ride bikes together!  It was so awesome and we are so thankful for this charity and the grants they provide!  We could have never afforded a handcycle on our own and Alex truly missed being able to ride bikes with his friends and cousins, we are looking forward now to many more family bike rides in our future! 

Thank you for all your support and prayers!  We will update again once we hear from the Oncologists Wednesday evening.

With Faith, Hope, and Love Always,
The Green Family

Wednesday, July 15, 2014: Alex has been doing pretty well, he's had somewhat of a busy/rough few weeks.  Oh how we long for the days when the boys could just be boys.  Sometimes I feel a little bitter and jealous of others who get to just plan trips or little playdates without the thoughts of "what if we have to go to the hospital", "what if Alex gets a fever", "have they been sick", "are his counts ok", "can he eat that" etc.  Alex has his first break today in 12 days without having to go to either the hospital or clinic for counts.  And while I know I should be thankful that we are not in the hospital and that we can come home everyday, part of me is also angry that while so many kids are going to camps, having sleepovers, going on vacation, our boys' summer schedule is revolving around cancer and its relentless and seemingly endless treatments. 

Alex had his third round of chemo without issue.  He did have more nausea this time around, that seems to be getting worse with each treatment and did get sick a number of times at home.  He's a trooper though and will just get sick and then pretty much go back to watching tv or laying in bed.  He's seems to be doing a little more of those things too, laying in bed and laying low.  Don't get me wrong, he also plays sports in the living room with Derek and Jacob and goes swimming in the pool at his Grandma and Grandpa's when he is able, he just doesn't seem to last as long but I guess that's to be expected with the treatment and everything.

We just got through testing his counts everyday, giving him shots every night, and checking for the CD34 marker which determines if his body is creating enough stem cells for the stem cell collection and unfortunately it doesn't look like it is.  His number teetered between .000 and .005 for over a week and then yesterday went to .01, we needed .50 (to at least try the procedure), 1.0 is ideal.  So with that said, Alex is scheduled for a Bone Marrow Collection procedure instead next Tuesday, July 22nd.  This may be a good thing as Alex was dreading the stem cell collection (procedure described in last update) and with the bone marrow procedure he will remain asleep for the entire thing.  The down side to the bone marrow collection is that there is no test that will tell us ahead of time if he has sufficient marrow or not, so there is a possibility that they could try to collect from various places and still not get what they need.  The procedure is not painful for the most part, some have pain in their bones in the days following but they think that because Alex has lost a lot of bone density due to the paralysis that this may actually help him and that he may not have as much pain as others sometimes experience. 

We are asking for prayers again as Alex will have scans tomorrow.  I feel like we are always asking for prayers, especially around scan time, but scans truly are one of the most stressful and telling things we go through.  Our lives revolve not only around the treatments but definitely around the scans.  Scans can make or break you...they determine most everything.  Families we know whose children have been cancer free for years STILL (and very much have every reason to) freak out with stress and anxiety about scans.  I don't think that will ever go away.  So Alex's scans are tomorrow, we pray that the chemo is still working and kicking the heck out of his cancer!!!  Alex will have an appointment Friday for a type and cross in preparation for possibly needing a blood transfusion on Monday prior to the bone marrow procedure Tuesday.  Its unreal it seems as I type some of the things we are doing, who would ever imagine having to go through so much, especially children? 

We pray for the strength and faith in knowing that we are not in control.  As a parent that is SO incredibly hard to cope with when your tendency is to want to fix everything for your children, to make their pain go away, to take their cancer from them in a second and take it all yourself.  But instead, we must try to be patient without understanding but only in trusting that there is a greater purpose for all of this.  We constantly struggle with reading medical articles, looking at percentages and survival rates for various possible treatments, balancing between keeping Alex's life as normal as possible and keeping him as healthy as possible, and yet all the while wondering if all we are doing really matters when we are not in control?  God knows the outcome, He knows our hearts and prayers, and He knows the plan and the purpose, we just try to navigate through all of it as best as we can and to do whatever we can to love, cherish, and do the best we can for our children.

We have been so blessed in so many ways, I pray we never forget what it feels like to live like you really don't know what tomorrow will bring.  To cherish every moment, every little smile, laugh, or hand held so deeply that it makes you want to cry each and every time they happen.  Thank you to everyone who has helped us through this journey, it truly does take an army to fight childhood cancer, and Derek and I are so incredibly thankful that we have had so many people support us in this.  Your encouraging words always come at just the right time and for that we are so thankful.

With Faith, Hope, and Love Always,
The Green Family
 

Thursday, June 19, 2014: Quick update for now, Alex is doing well and is feeling great after his counts have recovered and he got some platelets earlier this week. We met with the stem cell transplant team last Friday and got a good understanding of how that all works and the process for collecting, freezing/storing, and transplant down the road. That said, we were disappointed as Monday when they checked Alex's counts and thought that the timing would be right for the collection procedure to take place on Tuesday, we either seemed to have missed the opportune time for collection OR Alex simply does not have enough stem cells (due to all the past years' chemo/radiation treatments). We are staying hopeful that we may have just missed the best date to collect. The plan going forward is that Alex will start Round #3 of chemo next Thursday and will be inpatient Thursday-Sunday. They have pushed it back a few days in hopes to better time the blood checks and to be able to do the collection procedure after this round. Alex is not looking forward to the collection procedure, while it isnt another surgery per say, he would need to be put to sleep while a catheter is inserted into his femural vein (leg) or an artery in his neck and would have to be still for 6-8 hours. It isnt painful, just uncomfortable and incredibly boring. SO when we learned this last round didnt work out and he was off the hook for the procedure Tuesday, you wouldve thought it was like Christmas morning at our house:) If anything, this gives Alex a little more time to prepare for it knowing better now what is in store with that.

We are enjoying the time together and not in the hospital and are thankful that Alex seems to again be doing so well with the treatment. He has complained randomly of his heart beating fast/hard/skipping so we are keeping an eye on that. He seems to have this off and on and in the past we have gotten his heart tested (one of the long-term effects of the harsh chemo treatments our kids have to go through) and there has never been anything found wrong. That said, we will talk to the Oncologist at our next meeting to see if its time to check again since its been awhile.

All else has been pretty well, the boys finished up school although Alex (having been on homebound study the last few months) will continue for a little time into the summer. I cannot believe they will be going into 5th and 2nd grades in the fall!!!

Dont forget to email us pics of you in your Alex's Army tshirts! Pics should be emailed to derekgreen09@hotmail.com.

With Faith, Hope, and Love Always,
The Green Family

Wednesday, June 11, 2014:  Alex's second round of chemo last week went well...we were inpatient for the 4 days and he didnt have really many issues.  He didnt get sick this time around and while he had a few days of not eating as much and feeling a little nauseaus, we were able to manage that with the anti-nausea meds.  I dont know if it was him knowing the good news that the chemo was working or if he just was in a mood, but we were super pumped up on the way to the hospital this go around and he was jumping on the hospital bed when he got there and making all the nurses laugh right away.  We had a visit from Turley the Magician, some may remember Turley from the "No More Chemo" party we had...was that last year?  I think so.  But anways he remembered Alex and showed him some new cool magic tricks which Alex enjoys.  The stay was pretty uneventful for Alex and we were able to leave as scheduled by late Thursday afternoon. 

While we were there however, something happened to one of the other children that I have been playing over and over in my head and it has hung very heavy on my heart.  It was Thursday morning at 10 am and Alex was still sleeping soundly in his bed.  I was on my laptop working on some Alex's Army stuff when all of a sudden I heard a female yell, "Help! Help!  He's not breathing!"  Within seconds I heard many nurses running toward the room that was only 2 doors down from us.  There was a loud rapid beeping from the machines in that room...a beep I had never heard before but it seemed to pierce my heart.  Knowing I couldnt do anything I immediately just started praying over and over "God, please save this child; God, please help this child; God, please help his parents; God, please dont take this child"  Not knowing what else to say or do, I repeated these things over and over and over again as tears were streaming down my face.  It was one of the scariest things I have ever experienced...announcements were made over the intercom system with codes I wasnt sure what they meant, Doctors rushed in and a team rushed in with a stretcher and the boy was rushed away.  I could tell before he was taken away, just by the conversations that I overheard that the team was able to get him oxygen and breathing and that he was 18 years old.  At this time Alex woke up and asked me what was wrong.  I explained to him a little bit about what had happened and told him we needed to say a prayer for this boy and his family.  I don't know his name, all I know is he is another boy, like Alex, fighting this dreadful disease of cancer.  While Derek and I have had many conversations about Alex's battle, treatment options, how to talk to Alex about all this, how to deal with it ourselves, the list goes on and on; I dont think anything has ever brought the reality of what we are fighting and what we are up against than that moment.  We have met many friends in this journey, friends whose children are in remission, friends who children are still fighting, and friends who have lost their babies to the disease.  There is a fear of losing your child that all parents I think have...the what ifs everyday of things that could possibly happen are with us all...however, when you actually experience it, or when you come so incredibly close to experiencing it, I dont think there are any words to describe that pain or that fear.  I have come to terms with what happened last Thursday, our nurse came in about an hour after to ask if we were ok (she had tears in her eyes as she spoke with us about what had happened), and while she couldnt say alot she was able to tell us that he was transferred ultimately to the PICU where he could be monitored more closely and that he was breathing again and his parents were on their way.  I know these scenerios happen everyday...it just really hit home when it was 2 doors down.  Asking for everyone to say a prayer for this child as well as for his parents.  Derek and I were talking about how we were so fortunate that we were able to always have 1 of us with Alex at all times when he is in the hospital.  Not all families are able to do that and I can't imagine the burden and heartache they feel.  While this boy was 18 years old, I still couldnt imagine getting that call as a parent and having to drive to the hospital not knowing what was happening.  Please pray for our friend 2 doors down and for all kids who are battling this terrible and relentless disease.

We have an appointment on Friday to meet with the Stem Cell Transplant team.  I believe the plan is to start the collection process next week.  Its difficult to know exactly when this will happen as the timing is so important as far as the collection process needs to happen at the moment when Alex's counts have dropped to nothing and then start to rebuild themselves back up.  He has gone in for several blood draws and will have another Friday to see where his counts are...we will find out more about the collection process on Friday and while I dont really know what to expect I know it will be another procedure maybe even several that Alex will have while they extract his healthiest of cells and save them for when we do the high dose therapy treatment in about 2 months.  After the collection, his 3rd round of chemo will start Monday, June 23rd.

On another note, thank you to everyone who shared, bought, and have sent us pictures in your Alex's Army t-shirts!!!  It has been so uplifting and so cool to see everyone in them.  Alex said yesterday, "I'm famous."  He is so funny:)  If you missed the deadline for the shirt booster, do not worry, we have plans to do another booster down the road and eventually will have Alex's Army merchandise for sale through our nonprofit website (starting construction soon).  If you did purchase a t-shirt you should have received an email with instructions on taking and sending us your pictures for a photo quilt we are making for Alex and for a banner we are making for our future charity events.  We will send reminder emails out in the next week or so in case you missed the first one, in the meantime continue to wear those shirts proudly and help us spread awareness to the lack of funding Pediatric Cancer receives.  While it is awesome that we have been able to raise money at our walk events and that parents and families around the US have been doing the same thing for years, it really is crazy that the burden lies on us to find cures and funds to treat our kids. 

Just a reminder to save the date also for our "6th Annual Alex's Walk-N-Roll Toward Wellness" 5K event which will be held Saturday, Sept. 6th at Battlefield High School in Haymarket, VA.  We raised $17,346.55 at last years event and thanks to The Truth 365/Arms Wide Open and Rally children's cancer organizations who bumped our total up to $25,000.00, we were able to fully fund a phase 1 trial for recurrent Wilms Tumor Research!  We are very excited about this years event and hope that you will be able to join us.  Our walk is a family friendly event with raffle prizes, moon bounces, guest speakers, and more!  Please continue to check out our Events page as we get more details on registration etc.

Thank you for all your support and prayers!

With Faith, Hope, and Love Always,
The Green Family

Saturday, May 31, 2014: We are SO happy to report good news from the PETscan results!!!!  We learned yesterday that Alex's scans showed that this chemo is working!! Tumors in his lungs are shrinking and are no longer lit up on the PETscan meaning the cells are dying and no longer active!  While the spots in his abdomen still lit up they may very well not be tumor since if the chemo is working on tumors in his lungs it is thought to be working on all similar tumors. We are very happy with this news and are breathing a little easier finally. We will start Round #2 of chemo on Monday and Alex will be inpatient Monday-Thursday given that all goes well and we can stay on schedule with the chemo.  Our doctor was very happy with the results and feels we can and should get Alex to NED (no evidence of disease) prior to doing the high dose chemo/stem cell rescue.  So we have probably 2-3 more rounds of this before the high dose.  Asking for prayers for continued improvement and that we get to NED before it's time to do the high dose treatment. Thank you all so, so much for your prayers for Alex. He is a fighter and so are we, while the hard stuff is yet to come, we look forward to the day when Alex will be cancer free!!!

Alex is doing great right now, his counts are up and he is feeling well.  He has lost his hair but it doesn't seem to bother him anymore now that its completely gone.  He is such a handsome boy...hair or no hair:)  We are going to enjoy the weekend and are getting ready to head off to Jacob's t-ball game this morning.  I love watching the boys play sports and I love watching Alex give Jacob his pointers and tips in all that he does.

I hope everyone has a wonderful and blessed weekend, we sure plan to!

With Faith, Hope, and Love Always,
The Green Family
 

Tuesday, May 27, 2014:  I want to start out by saying thank you to everyone who purchased our Alex's Army t-shirts, to everyone who spread the word, and to everyone who sent well wishes and donations through this booster campaign we did.  We were extremely humbled by the incredible response!  We sold 260 shirts and raised just over $5500 towards Alex's medical account and the startup of Alex's Army non-profit!!!  Thank you, thank you, thank you!  I will be sending out an email to all who purchased shirts.  We are going to ask you to send us a picture of you and/or your family wearing your Alex's Army t-shirts so that we can put them together in a collage in order to make a photo blanket for Alex as well as a banner to be displayed at our future charity events.  You all rock and we were so excited to see the names of everyone who will be wearing their Alex's Army t-shirts!!! 

Alex is doing well, he had one fever during this last treatment for which he was admitted to the hospital but only for a few days.  His counts did drop, the lowest we saw was an ANC of 26.  He received fluids and antibiotics which is normal protocol for fevers.  He felt ok during this although was tired and cold.  In the ER unfortunately we learned that with the double port, anytime he has a fever, both sides of the port have to be accessed.  Port access is a very stressful thing so it was pretty disheartening to learn that now he would have to be accessed twice when he used to only have to go through one with each fever...he was extremely anxious about the first port access and unfortunately they had trouble with one of the sides not working properly so they had to do it 5 total times!  It ripped my heart apart watching him have to go through that so many times...with that said, each time though got a little easier and easier for him so hopefully some of his nerves have been relieved and the next time he will know what to expect, I guess that would be the silver lining here.  He was a trooper as always though...

We are asking for prayers as tomorrow is Alex's PETscan in DC to see how this first round of treatment went.  If all is going well and this chemo is working then Alex will have his second round starting next Monday and will be inpatient Monday through Thursday next week.  We will also start stem cell collection (assuming this chemo is working) so that his stem cells can be harvested for the future high dose therapy with transplant rescue.  We honestly do not know what the plan will be if this chemo isn't working but we won't even consider that a possibility right now and are just trusting in God to provide the results.

We are also asking for prayers for Alex to feel the love and support you all so lovingly give.  He has struggled these last few weeks with the emotions again of these type of chemo treatments, unplanned trips to the ER, losing his hair, and his scars (now two more added to the list) on his body.  He is so strong yet he is also a 10 year old boy dealing with things most adults struggling to deal with...I pray he will see himself as we all see him.  I pray that God will comfort him and just really make himself present to Alex...I pray that Alex will stay strong and persevere through this with confidence and faith...I pray that he will know that he is not alone and that its ok when he doesn't feel strong or brave, that every hero has days like that and that during those times, it will be God who will carry him and his friends and family who will be strong and brave for him.  

I will post with an update on tomorrow's PETscan results once we receive them and know what the plan will be.

Thank you all again so much for everything.  We could not go through any of this without you, without the families we have met who are walking similar journeys, and without our faith in God. 

With Faith, Hope, and Love Always,
The Green Family

Monday, May 12, 2014:  We are home (yay)!  Alex started feeling better Sunday morning, maybe it was because Jacob got to sleepover at the hospital or maybe it was because it was Mother's Day:)  Not sure but he woke up in the morning hungry which was a good sign and the boys ate breakfast together in Alex's hospital bed.

We don't have any appointments this week which will be nice for Alex (and us all) to be able to lay low and rest a little, praying for no fevers or anything like that.  He will get his counts checked next week to see how they are...two of the chemos he is taking are expected to lower his counts around days 10-14.

On another note, we are very excited about a t-shirt booster we have created to help raise money for Alex's medical account, to help us with start-up costs for our non-profit, and so that friends, family, classmates, etc. could show Alex their support as he goes through this next phase of treatment.  There is a link below and also on our Events/Fundraisers page.

It is super simple to order, we are offering unisex, ladies, and youth tshirts and shirts are shipped directly to you!!  We would like for all who order shirts to send us a photo via facebook or email so that we can show Alex pictures of you rocking your shirt! We also are planning to make a college/banner of some sorts to display at our next walk but are still working out details for this and will update soon on what to do.

For now, we hope you will check out our booster, share it with anyone you feel would be interested, and then proudly rock your Alex's Army shirt!

You can order by going to:
https://www.booster.com/organizer/campaigns/alexsarmy_fightingpediatriccancer

Ordering is open through Wednesday, May 21st so don't delay!

Thank you all for your continued prayers and support.  Thank you for the guestbook messages you have sent, we have been reading them to Alex and he now has access to them as well so that he can read them when he needs a little uplifting.

With Faith, Hope, and Love Always,
The Green Family

Friday, May 9, 2014:  Things have been kind of crazy so I havent had the chance to update since the last one done.  We had a great weekend last weekend and kept very busy.  We watched Jacob play teeball Saturday morning and Alex got to fill in for Derek as coach and helped keep the kids organized in the dugout (this proved to be quite the challenge with 5-6 year old boys but he did a great job).  He was sure to high five each kid as they came in and out and cheered for each of them (especially his little brother).  Alex is such a compassionate person and loves little kids...he is such a great big brother and I love sitting back and watching him.  After the game we went to a local farm to pick tulips, while the boys initially werent thrilled about going, they ended up really enjoying it and I enjoyed the mommy/boys day!  Sunday we went to Hopecam's 5K event where Alex was the honorary Hopecam kid.  Len Forkas, the founder of Hopecam, is a great guy who we have known for several years now.  We met the rest of his family who are wonderful and just were blessed to be able to attend and participate in their event.  Alex, Derek, and Jacob did the whole 5K while I kind of waddled behind with Caitlyn, I am pretty proud for making about 2 miles of the walk. I got teary eyed (go figure) as Len spoke about Alex in the beginning telling him how he is Len's hero, he even added a few comparisons of how Alex is like Chuck Norris (even tougher).  The highlight of the event though, was the very end.  The finish line is at the end of a fairly good size hill...I didnt see it because Jacob and I were behind Derek and Alex, however, apparently Alex being the strong-willed determined kid he is, wanted to finish on his own.  Alex went ahead of Derek so that he could push his own way up the hill to the finish line.  I can picture him pushing with all he had to cross the finish line without being helped and according to Derek and Len, there was a huge crowd there cheering him on with each and every push.  Alex finished on his own and once again proved to us and everyone around him just how strong, how amazing, and how determined he is...while he doesnt realize it still...he is our inspiration and continues to inspire many around him.  We rested at home for a bit afterwards and then celebrated by going out to the Cheesecake Factory, thanks to gift cards that were given to us at our friends Charity Golf Tournament a few weeks back.  We really did have a great weekend.  We didnt think too much about the upcoming week, instead we focused on spending time together as a family and enjoying all of our weekend's events, together.

The weight of the upcoming week did come back pretty much first thing Monday and our focus became Wednesday's surgery and the start of chemo.  Wednesday we got to DC Childrens around 1 PM for the procedure.  It was nice that Jacob came along and wanted to help be there for Alex, I know it meant alot to Alex that he was there.  Alex did awesome, he didnt want to take any medicine prior to going back, we have sometimes done this in the past for his anxiety, and even though when it was time to go back he was crying, he was so incredibly brave  and strong leading up to that point.  The surgery went well and they put the port in the opposite side that he had had the previous ones, there was too much scar tissue and not enough good vein/artery there anymore to use.  I wish I could say everything else has gone well, but Alex honestly has had a rough last few days.  Upon waking up from surgery he was in a lot of pain.  He usually wakes up very easily however this time he woke up screaming/crying.  For some time we couldnt figure out what was wrong and he wouldnt talk to us or tell us what was wrong.  Finally he told us his neck hurt and the nurse gave him some morphine.  After about 10-15 minutes he was able to finally calm down but it definitely was still hurting him.  While the port is in his chest, there is a tube or part of it that goes up into a major artery in his neck.  He could feel the tube which was very uncomfortable and he had pain from the incisions.  It was really hard to watch him in that much pain.  Because we didnt get out of the surgery until late and he was having pain, they decided to wait on the chemo and to start it Thursday morning instead, Derek and I (and I am sure Alex) were very thankful for this decision.  Alex slept pretty well through the night and woke up in a little better mood Thursday morning.  Unfortunately, between the premedications for chemo and the chemo itself Thursday ended up being a tough day as well.  He is taking a combination of 3 chemotherapy drugs, plus other drugs to help with side effects, counts, etc.  All chemos are IV, the first Pacitaxal is given over 3 hours.  This requires premedication with a steroid Dexatron (sp?) which also actually works together with Pacitaxal to fight the cancer cells.  The second is Ifosfamide which goes over an hour and then Carboplatin which goes over another hour, for a total of 5 hours chemo infusion on Day 1.  Between the chemo and the 4 premedications he took, Alex seemed pretty out of it and tired.  He ended up falling asleep around 2 and waking up around 5 when the chemo infusion was done.  That worked out well and I was glad he could rest, he obviously needed it.  That said, it was hard because the drugs were making his pupils go crazy and he was pretty moody and emotional.  Derek and I still arent completely sure if it was due to the steroid doses already, the anxiety and emotions of doing all this, or a combination of both.  Needless to say, Thursday was tough.  Alex was awake for a little while and ate some dinner but then fell back asleep for the night.  Hoping today will be better.  On day #2 (today) and day #3 (tomorrow) he gets just the 2 chemotherapies which he had in the past, the Ifosfamide and Carboplatin each over an hour period for a 2 hour infusion.  We are hopeful he will be able to go home Sunday and also hopeful he feels ok and can start to get into the swing of all of this again. 

The day prior to Alex's procedure, Derek took Alex to Target so he could use some of his birthday money to get something. Alex chose an MMA fighter action figure (can't remember his name - oops - but Alex has been into watching MMA lately). When I was looking at the MMA fighter he picked out I noticed he had a tattoo on his chest which said Phillipeans 4:13. Being bad at memorizing scripture still, I wanted to immediately look it up so Alex and I could know what it was:

Phillipeans 4:13 - I can do all things through Christ who strengthens me. (NKJV)

I was amazed because this exact scripture was one that Alex and I spoke of often when he first became paralyzed and was having to juggle rehabilitation as well as ICE-T chemo treatment for the last relapse.  This verse popped into my head often and seemed to show up everywhere back when we were going through that treatment.  I was so amazed and humbled at that moment when something so small like Alex buying a toy from Target, ended up being yet another reminder to all of us that God is in control and that all we need to do is trust in Him.  Many people call things like this coincidences, I now call them God moments.  God moments have a way of calming your soul and mind...they can be easy to miss if you arent looking for them or if maybe you dont need them...but they are huge when they come at just the right moment when you do need them.

There were two other verses that Alex and I discussed both prior to his procedure the last time and prior to this one as well:

Deuteronomy 31:6 - Be strong and of good courage, do not fear nor be afraid of them; for the LORD your God, He is the One who goes with you.  He will not leave you nor forsake you. (NKJV)

Isaiah 41:13 - For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you. (NIV)

I just wanted to share because I find so much comfort in scripture and in these God moments, I don't know where I would be or where we would be as a family if we didnt have our faith.  We did spend the first part of Alex's diagnosis without really knowing or understanding Christ, and it was hard, incredibly hard.  We were so angry and depressed and hurt by why we were going through all of it.  We tried to navigate our way through and to cope and take it all on on our own, but we ended up broken and defeated.  While it is still hard no doubt and while we are still hurting, with our faith we have hope in what may ultimately seem to some like a hopeless situation; we have some peace through what is otherwise an extremely intense and unbearable journey.  We have comfort and a different perspective on life and all of that has been very good for all of us.

Thank you all so much for the encouraging words in Alex's guestbook...we will continue to read them to him when he wants us to and appreciate the prayers so much!

With Faith, Hope, and Love always,
The Green Family



Thursday, April 30, 2014:  Alex's procedure went well last week.  They believe they were able to break up and remove the large bladder stones as well as some of the calcification that had built up around his bladder.  Alex has been feeling well and was back in school pretty quick following this.

We had a PETscan on Tuesday of this week and last night just spoke with the Doctor about the results.  Of course the results were mixed, nothing is ever straightforward it seems.  So the positive is that there are no definitive new spots that they could say were obvious Wilms tumor.  That said, the spots in his lungs have almost doubled in size so they are growing faster than we originally thought AND they also saw several other smaller illuminated sections near his bladder/abdomen area...this is the part that is tricky.  While it is possible that these spots are related to the bladder procedure he recently had, there is no way to know for sure.  They would be too small to biopsy or to see surgically.  So with that, we were left with a few options given the recent scan results.
1.  Proceed with the surgery to remove the spots in his lungs and hope that these spots in the abdomen are related to the bladder procedure. (Positive to doing this:  Less invasive option for Alex / Negative to this:  The spots in the abdomen could be cancerous and then we would be left doing chemo anyway AND we would have removed a few more chunks of Alex's already smaller lung unnecessarily)
2. Wait a few weeks to rescan to see what the abdomen does (Positive:  Not doing chemo right away / Negative:  The spots in the lungs will continue to grow meaning removing more of lung in the surgery or larger spots do deal with by chemo)
3.  Go with the chemo route right away (Positive to this:  We would address the spots in the lungs and the spots in the abdomen with the hope that this next chemo regimen will be effective against Alex's tumors and while in doing this we can monitor the spots in the abdomen to see what they do while treating the spots in the lungs / Negative to this:  This chemo regimen is going to be the toughest yet - Alex is NOT happy about it).

So, given the above options last night Derek and I decided to go with #3.  We felt we couldn't wait and see what happens and we didn't want to put Alex through the surgery knowing that there could be other cancerous cells lingering.  Before when we had made the decision to do the surgery, we were about half and half with which way to go, this new information kind of pushes us more towards the chemo option. Our Oncologist agrees and advised he would recommend starting chemo right away as well.

Alex will have surgery next week to insert a port (we are praying this will be the one under his skin so that he can continue to swim over the summer when his counts allow).  He is extremely upset (as we all are) about having to get another port.  He is getting discouraged again and was very upset last night when we were talking about the change in plans.  Even though he knew it was a possibility, that didn't make things any easier.  My prayer for him is that he doesn't get defeated mentally, that he can stay strong and positive and that he can believe we will get through all of this.  We should be starting next week, they were going to try to schedule us for Tuesday, Wednesday, or Thursday, to have the surgery for the port and then will be admitted right away for chemo.  The chemo will be a 3 day infusion inpatient, Alex would then stay a 4th day to be monitored.  He will have to get Neupogen (sp?) shots again following treatment to help his counts recover quicker and most likely he will once again be homebound from school. 

Derek and I are ok.  We feel this is the best course of action although have to admit we are really scared.  We felt good about the possibility of being able to remove the spots surgically and leaving this chemo treatment as another option down the road.  We don't know what our options will be should this not work...that is scary.  Alex is so strong and healthy otherwise...I feel as though he will do good with this treatment as he has always done...but we haven't ever had to go through anything this tough before which is frightening.  The initial treatment of chemo and stem cell collection will not be too bad and actually before we can even do the stem cell collection in preparation for the high dose therapy we will have to make sure this chemo is actually working.  So first, please pray that this chemo is again effective on Alex's tumors.  We will want to get Alex as close to NED (no evidence of disease) as possible prior to doing the high dose therapy - reports and med journals have shown that patients who get to the point of being clear of disease have better outcomes than those who have tumor cells still present.  Assuming this chemo works, we will do 3-4 rounds I believe of it (I believe 1 round is 3 weeks), then after this we will address doing 1 round of high dose chemo w/stem cell transplant which for this we will need all the prayer warriors we can find!

So, please pray that with this chemo regimen we can get Alex to NED!  Please pray that while it will be tough, we will have the opportunity to do the high dose chemo w/stem cell transplant because at this point we feel this will give us the best chance in beating this beast for good!  Please pray that God will provide a miracle of healing for Alex, that He will continue to provide wisdom to our doctors and all that are treating Alex, and that He will give us all the strength we need to get through this.  And this one is really tough on me personally, but please pray that the timing of all of this is perfect, that God will allow our baby Caitlyn to come at a time that will allow our whole family to be able to be home together to enjoy her arrival, Alex is so excited about her coming and it breaks my heart worrying about the what-if's of all of this.  I hate cancer and no parent should have to even think about half of the things that run through my mind at times...so please, please pray for us.

With Faith, Hope, and Love Always,
The Green Family

Tuesday, April 15, 2014: Here we are again in this round and round, up and down process of battling cancer. We learned late last week that Alex scans were not stable and unfortunately adding to our reaccuring nightmare, his tumors have started growing again. I had written a poem and shared it on facebook to try to describe just how treacherous it is waiting for scan results...
 
 
 
 
 
 
Waiting
If you want to know why I look distant
Why I am distracted
I am waiting
If you are wondering why I look tired
Or why I am not as cheerful
I am waiting
I look like I haven’t slept, because I haven’t
I look like I’ve been crying, because I have
I Am Waiting
Waiting for the call, the moment that could change everything
Or that will allow a few more weeks of normalcy
Waiting for the call that in one instant could tear me apart
Or give me a few moments of sheer happiness before the worry starts creeping its way back

While I am waiting, I pray…a lot
I work and I try to go about my normal routine
But nothing takes away the constant “what-if” feeling
The fear
The helplessness
Of waiting
At the moment the phone rings
My heart stops and then starts pounding
My blood boils
For the few moments it takes for the Doctor to say hello
My entire world freezes and it seems like an eternity while I intently listen and hang on to every word
The only thing that is worse though than waiting, is getting the news we didnt want. It rips your heart out every time...it breaks into a million pieces but at the same time you try to keep your composure so that you can ask every single question you can think of while you have the Dr. on the phone. So that you can try to get a clear understanding of every piece of information you can, before hanging up and sharing the news and ripping others' hearts out. Living with cancer and watching your son, your child, your baby, have to battle this beast over and over and over again is hell. To say, "I hate cancer" is such an understatement but its all we can manage. It breaks my heart everytime I hear my son say, "I hate my life." I know that this feeling he has is solely directed at his life with cancer, and that its not his entire life, but hearing your child say that is heartwrenching. I have recently asked him if we could start saying, "I hate cancer." instead. As cancer encompasses everything he hates, needles, ports, surgeries, scars, blood, scans, losing his hair, throwing up, being in a wheelchair, not being able to walk or run or jump, and probably the worst thing of all to him - not being able to just be normal.

It is spring break and so far the first three days are going to be filled with appointments. We spent most of yesterday at DC Childrens, luckily only for consult of an upcoming surgery (yes this will be surgery #13) Alex has scheduled and no pokes or anything needed, but on a beautiful day on the first day of spring break when the boys woke up in the morning saying this was going to be the best day ever and I had to remind them we had to go to DC...it just doesnt feel right or fair. Today Alex has a kidney test at Fairfax where he will get an IV and they inject radioactive dye into him to see how well his renal function is - this is in preparation for the next chemo plan; and tomorrow he has an appointment with a hearing specialist to test his hearing to check for damage and to also get a baseline in order to prepare for potential hearing loss after the next treatment.

I havent always written about all of the appointments or things that Alex goes through other than major surgeries, etc. just because we try to focus on the positive. But in doing that I feel sometimes its easier for people to look away and think that things are ok and that cancer treatment is just cute kids with bald heads. Yes our kids are cute, and yes their bald heads are beautiful - but what those bald heads represent...the chemicals, the pain, the pokes, the tears...that is anything but beautiful.

We know that we are in good hands and have peace in that. Our Oncologist is one of the best in the nation for Wilms Tumor and we trust his opinion and recommendations. He is not giving up hope on Alex and has promised us that if we got to a point where he didnt think any further treatment would be beneficial to Alex or if Alex couldnt take anymore...that he would let us know. He doesnt feel we are there quite yet and we dont either. These spots we are dealing with are small (good news) and there are no new spots (good news). Alex's tumors have always been very responsive to the chemo/radiation that we have given him (good news) and his body has always handled it very well (good news). Alex is a fighter and so are we...we are tough and strong and we will not let this cancer beat us. We are discussing the next steps with our Oncologist and will formulate a plan here over the next week. We meet next Monday April 21st and should have a good idea at that time what we will do.

Alex has a procedure scheduled on Thursday, April 24th at DC. This was something not related to this news and was planned prior to us learning of his relapse. He has been dealing with bladder stones for some time and this was going to be a good time to get those taken out. The new procedure that we are hoping they can do in the same surgery is to put in another port in preparation for chemo.

For those who might be unfamiliar with ports, they are (in my opinion) the worst things ever - almost up there with chest tubes - thats how much I hate them. The port is placed under the skin in the upper chest area closest to the heart. It acts as a way for the chemo to be injected as close to major blood vessels as possible...I understand the medical need for a port, but as a parent watching your child have to hold still and allow a nurse to put a long curved needle into the soft fragile skin and then cover that fragile skin with really sticky tegaderm (which to remove to "deaccess" is a nightmare in itself) is horrible. When Alex was 5 we used to have to sit behind him and hold him down while he was screaming and crying. I would try to hold back my tears but it was next to impossible and so many times (though he wouldnt know it) I would be crying right along with him on the outside, and screaming right along with him on the inside. You have to worry about not getting a good placement with the needle and having to repeat the process, you have to worry about infection (though luckily we have never experienced this), you have to worry about getting a nurse who isnt as sensitive to the fact that your child is scared to death of this process and may take quite a bit of patience and coaxing to get it done. We have had to tell nurses in the past that we want someone else to do it, we have had to even raise our voice sometimes if we felt the person wasnt being patient enough or gentle enough. The whole process is a nightmare, and I can see why Alex feels sometimes like he hates his life, though I wish he would say I hate cancer.

So, we are preparing ourselves mentally again for the next round of fighting. It wont be easy, it never is, but we are going to get through this together as a family, again. Alex is amazing and while he wont like any of it (well except for maybe the pizza and wii games, etc in the hospital rooms) we will be together side by side fighting this monster that is cancer.

With Faith, Hope, and Love Always,
The Green Family

P.S. I used to read all of the guestbook comments to Alex when he spent long months in the hospital. Please dont forget about our guestbook and feel free to leave Alex messages of encouragement. He loves to hear them and we love to receive them. They do not load right away as I have to filter them due to some spam messages we started receiving last year that overtook our guestbook for awhile until I caught onto it. That said, we do get them and will post them and appreciate every prayer and warm wish. God bless!

Thursday, April 3, 2014:
  Things continue to go well at the Green household, despite a really bad end of season stomach bug that made it through our house this last week.  Alex, unfortunately, got the worst of it and was sick for a good 7 days, he is back to school today though and is slowly but surely getting back to himself - and just in time too as this weekend we will be celebrating his 10th birthday!  Alex officially turns the double digits on April 8th - I still find it hard to say that our baby is turning 10...wow!  He is very excited about turning 10, as he should be.  It's a big deal and we are excited to celebrate with him.

Alex has been doing well and as you know we continue this same chemo regimen we have been on for awhile now.  His next scans are coming up quick and are scheduled for Monday, April 7th, so if you would kindly send up a few extra prayers for good news, we all would appreciate it! 

Also coming up we will be meeting with a Neurologist to discuss Botox treatments for Alex's leg muscles.  Alex's muscles have gotten extremely tight over the last several months and Botox treatments were something we were looking into prior to this most recent relapse.  We put it aside so that we could focus on the next steps in treating Alex's tumors, but now are ready to reapproach the possibility of this as an addition to rehab therapy for Alex's legs.  Alex hasnt stopped wanting to walk or wanting to try to get out of his wheelchair, while we dont know what he will be able to do, we believe where there is a will (and he definitely has that will) there is a way.  Alex is a determined young man, he has always been so, and while we cannot guarantee or have anyway to know for sure whether or not he will ever be able to walk again on his own, we aren't quite ready to give up on that idea just yet.  If the consult with the Neurologist goes well, we will probably start this up in the summer along with rehab again to try to really push for improvement in his mobility.  Extra prayers here would also be appreciated.

In other exciting news, we learned recently the sex of our new baby.  We actually were able to have our OB write the sex down and put it in a sealed envelope and have the boys read it to us.  Derek and I thought this would be cool for them so they were actually the ones who got to tell us what we were having.  We recorded it and wanted to share since it's just so cute:

http://youtube.com/watch?v=s2NPNRtW2Ac&feature=youtu.be

For those who aren't able to watch the video for any reason (SPOILER ALERT), we are having a girl!  The boys are super excited, Alex especially was hoping for a little sister and while Jacob wanted a little brother, he is very excited too!  We feel so blessed to be where we are, surrounded by people who love us, blessed to have our family together - all of us - and now especially blessed to be having another member to love and adore! 

Finally, check out our events page if you havent already.  We have some exciting events coming up to raise money for various Pediatric Cancer organizations in effort to continue to raise awareness and funding for Pediatric Cancer Research.

This update is fairly short, sorry about that, will update again next week once we have scan results.

Thank you all for your continued prayers and support!!!

With Faith, Hope, and Love Always,
The Green Family


Thursday, Feb. 27, 2014:  So much seems to be happening as of lately and all of it is every exciting!  Derek and I are filing the paperwork for our nonprofit which will be a Christian centered nonprofit aimed at supporting families of pediatric cancer patients through prayer and financial assistance, raising awareness for pediatric cancer, and raising funds toward pediatric cancer research.  We will maintain this website which will be used to update on Alex and our family, but we will be adding a new website for our nonprofit.  I understand that the process can be slow, but as soon as we have more information we will post – we are really excited about this next step in making a difference in the lives of families like ours battling this devastating disease.
 
 
 
 
 
 
  Things continue to go well at the Green household, despite a really bad end of season stomach bug that made it through our house this last week.  Alex, unfortunately, got the worst of it and was sick for a good 7 days, he is back to school today though and is slowly but surely getting back to himself - and just in time too as this weekend we will be celebrating his 10th birthday!  Alex officially turns the double digits on April 8th - I still find it hard to say that our baby is turning 10...wow!  He is very excited about turning 10, as he should be.  It's a big deal and we are excited to celebrate with him. Alex has been doing well and as you know we continue this same chemo regimen we have been on for awhile now.  His next scans are coming up quick and are scheduled for Monday, April 7th, so if you would kindly send up a few extra prayers for good news, we all would appreciate it!  Also coming up we will be meeting with a Neurologist to discuss Botox treatments for Alex's leg muscles.  Alex's muscles have gotten extremely tight over the last several months and Botox treatments were something we were looking into prior to this most recent relapse.  We put it aside so that we could focus on the next steps in treating Alex's tumors, but now are ready to reapproach the possibility of this as an addition to rehab therapy for Alex's legs.  Alex hasnt stopped wanting to walk or wanting to try to get out of his wheelchair, while we dont know what he will be able to do, we believe where there is a will (and he definitely has that will) there is a way.  Alex is a determined young man, he has always been so, and while we cannot guarantee or have anyway to know for sure whether or not he will ever be able to walk again on his own, we aren't quite ready to give up on that idea just yet.  If the consult with the Neurologist goes well, we will probably start this up in the summer along with rehab again to try to really push for improvement in his mobility.  Extra prayers here would also be appreciated. In other exciting news, we learned recently the sex of our new baby.  We actually were able to have our OB write the sex down and put it in a sealed envelope and have the boys read it to us.  Derek and I thought this would be cool for them so they were actually the ones who got to tell us what we were having.  We recorded it and wanted to share since it's just so cute: For those who aren't able to watch the video for any reason (SPOILER ALERT), we are having a girl!  The boys are super excited, Alex especially was hoping for a little sister and while Jacob wanted a little brother, he is very excited too!  We feel so blessed to be where we are, surrounded by people who love us, blessed to have our family together - all of us - and now especially blessed to be having another member to love and adore!  Finally, check out our events page if you havent already.  We have some exciting events coming up to raise money for various Pediatric Cancer organizations in effort to continue to raise awareness and funding for Pediatric Cancer Research. This update is fairly short, sorry about that, will update again next week once we have scan results. Thank you all for your continued prayers and support!!! With Faith, Hope, and Love Always, The Green Family   So much seems to be happening as of lately and all of it is every exciting!  Derek and I are filing the paperwork for our nonprofit which will be a Christian centered nonprofit aimed at supporting families of pediatric cancer patients through prayer and financial assistance, raising awareness for pediatric cancer, and raising funds toward pediatric cancer research.  We will maintain this website which will be used to update on Alex and our family, but we will be adding a new website for our nonprofit.  I understand that the process can be slow, but as soon as we have more
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Months back we asked for support in a petition that Andy Woods (father of Stellablue Woods) and I created in an effort to persuade a pharmaceutical company to allow a promising chemotherapy drug into trial for Wilms kids.  We received an abundance of emails from people from all over the country signing and supporting our cause and we are so thankful to each of you who signed and helped collect signatures for us.  Though it has taken some time, please know that all of your signatures have made a difference!  I recently spoke with Andy Woods who just this past week sat in on a conference call between some very well-known Pediatric Oncologists, as well as representatives from the National Cancer Institute, and Kids V. Cancer founder Nancy Goodman, to discuss this very drug that we petitioned for!  The consensus was very positive and now it seems to not only be a matter or IF but WHEN.  The drug maker is well aware at this point of the interest from the Pediatric Cancer Community.  I don’t have all the details yet but I will be reaching out to all our supporters again very soon as we get to these final steps of making this drug available for our kids! 
Below are a few links to some great websites that I have recently come across.  I have mentioned I think that we have started juicing as a family after my friend Andy Woods recommended juicing as a way to possibly help fight cancer naturally (not to replace the treatment, but to be used in addition to it).  We got the OK from our Oncologist and it has been going pretty well.  I follow Andy’s blog on juicing which has some great recipes but also has a very interesting section about cancer fighting components and cancer fighting foods.   I recommend this blog to anyone and everyone and urge you to check it out! 
Another resource I came across is one that provides recipes for meals using cancer fighting foods.  The recipes are provided by some top chefs and the ones we have tried have all been delicious!   I wish they had a few more kid-friendly meals but otherwise I would recommend this site also.
www.eattobeat.org      
These websites will be added to our nonprofit website when we get that up and running, but I thought I would share them now for those who are interested.
Things are going well for us; the boys have been pretty healthy overall amongst the usual illnesses of the winter season.  Jacob started playing sled hockey with Alex and the DC Sled Sharks and both boys LOVE playing on the same team.  They were interviewed last weekend by the Washington Kids Post so if you get the post be sure to check the next few issues!  We have been watching the Olympics and are VERY excited about the start of the Paralympics coming up soon.  We especially will be closely following the US Men’s Sled Hockey Team.  There was a really cool special on PBS on the team which included personal stories on a lot of the players, we watched it just last night with the boys and it was just such an inspirational thing to watch.  Here is the link in case anyone’s interested:
To close this entry, I wanted to share something Alex said the other day that I thought was awesome and kind of shows how far he has come.  Last Friday we took the boys to Liberty Ski Resort to participate in the annual BARS (Baltimore Adaptive Recreational Sports) ski event.  We did this last year for the first time and Alex enjoyed it so much we wanted to participate again.  Unfortunately the event is only on Thursday and Friday so the boys missed a day of school, but the experience is well worth it!  We were in the lodge and waiting for everyone to get checked in, get assigned an instructor, get equipment, etc. and I started to get that motherly nervousness about the boys and their fearless ways.  I looked at Alex and told him, “Alex, please be careful and don’t do too much.  If you need a break let the instructor know.  Know your limits.”  And without missing a beat or batting an eye he looked at me and said, “I have no limits.”  As a mother this probably could be something scary to hear…but at that moment I was just so proud of him. 
So with that, thank you as always for listening.  Check out the websites above if you have time and definitely check out the PBS special on the US Men’s Sled Hockey Team!   
Thank you to all for listening and for your support!
With Faith, Hope, and Love Always,
The Green Family
Tuesday, February 4, 2014:  Good news from Alex's scans on Monday!  We are happy and relieved to report that everything is stable, which means not growing.  While the spots are there they have not changed which is good news.  We meet with Dr. Dome on Monday, Feb. 10th to get more info but expect that the plan will be to continue on this chemo regimen for a few more cycles.  It's been difficult doing scans every 6 weeks but we'll take it 6 weeks at a time as long as we need to.  Thank you for all your prayers and support. 

Today is National Cancer Day, you can tell by the purple profile pictures that popped up all over Facebook.  The profiles look cool and are for a good cause, to create awareness, to show support, and to raise money for the American Cancer Society but I cant help but to be upset about it all.  Recently, there was a petition that swept across facebook, twitter, the internet, asking the White House to Free Justin Beiber from the recent charges of his immature and irresponsible behavoir.  Of course many younger generation fans of Beiber signed the petition and this petition got so much support (over 100,000 signatures) apparently the White House had to comment on it.  YET, when parents of children battling cancer, send their petitions across facebook, the internet, etc. we barely hit a couple thousand at times.  I'm just venting and don't get it...I don't understand why when I google "Recent developments in Wilms TUmor Research" my search results return articles and medical journals from the 70s, 80s, and maybe 2008.  I dont get why in the last 30 years only 1 new drug specifically for Pediatric Cancer has been developed and in the meantime our children are receiving treatments meant for adults and meant for other cancers.  I dont get why the NIH only allotted 4% of research money to ALL of childhood cancer research and I dont get why there is not 1 single Pediatric Oncologist in the advisory board for NIH.  I dont get why when we petition a drug company for a drug that is being trialed in adults and that is thought to be very promising for WIlms tumor AND when we have support from Wilms Tumor parents who contact the drug company offering to sign a liability waiver to try to get that medicine in trial for Wilms for children who HAVE NO OTHER OPTION, that we are denied.  In the recent weeks several children who have Wilms Tumor, and the same diagnosis that our sweet Alex has, has passed.  One of these precious children, Alex Seigel, you may remember as I had asked for prayers back in my Dec. 12th update.  Alex passed on Sunday, Jan. 26th in the arms of his mother, Jen.  The pain we feel as we learn of each of these children passing, is indescribable.  And as each one passes, it seems as though the anger and frustration of the situation that we face, builds.

Cancer is the #1 leading cause of death by disease in children.  I dont need to go on with all of the statistics because I know the people who read our Alex's updates have heard them before and have been so supportive of petitions we ask you to sign, etc.  But where is the sense of urgency in the rest of the nation to do better for our kids? 

Any adult I have spoken with about this pretty much agrees that we all one day kind of expect to get some form of cancer, as an adult.  It just seems like part of reality that its not a matter of if it happens but when.  But every single one of us adults I think would not hesitate to make sure that funding is first and foremost prioritized to the children fighting this disease which is NOT caused by their lifestyle choices or environment...which is NOT caused by any fault of their own. 

Often I think about how healthy I was when I was pregnant with Alex, I didnt drink, I didnt smoke, I took my prenatal vitamins, I craved OJ and strawberries and other than the occasional Big Mac here and there, I was pretty healthy.  Yet that didnt stop cancer from growing in his little innocent body!  Derek and I had genetics testing done and there was nothing genetically found to have caused Alex's cancer...it just happened. 

I am angered by the fact that Justin Beiber gets more support than children with cancer.  I am frustrated that it is taking SO long for new medical developments to take place because of the lack of funding.  I am incredibly saddened by the passing of each child and hope that all of our friends, family, supporters, will continue to do what they can to raise awareness and to get angry too!

There is progress being made and that is exciting, it just gets so disheartening when we learn of another child who has passed, another child for who that "progress" came too late.

With Faith, Hope, and Love Always,
The Green Family


Friday, January 17, 2014:  Thank you to our cousin Steven for updating while we were away on the results of the scans.  So as mentioned the scans went well...while it isnt NED (No Evidence of Disease) we were happy that there wasnt any sign of disease progression.  There are four small nodules in his right lung which are the same size as the last scan.  There is a larger nodule which is also located in Alex's right lung close to where the chunk was removed from the last biopsy.  This nodule while it did appear larger in size, was completely hollow meaning the chemo is still working.  It will become a bigger concern if the hollow part were to start to fill in becoming solid again OR if the small nodules start to grow.  The oncologist was going to show the report/scans to the surgeon who did Alex's last surgery to get his thoughts...I hate the idea of another surgery and just wish we could kick this stuff for good already!  The only other thing that showed up on the scan was that his kidney appeared larger which could possibly mean there is an issue with his bladder and ureter.  We have a special scan in February scheduled with a follow up with Alex's urologist to discuss what could be going on there but hopefully it isnt anything serious and it should not be anything related to the cancer, most likely related to the spinal cord injury and paralysis.

Other than the weekly blood draws and scans every 6 weeks, life is pretty good.  Wow - definitely did not think I would ever say those words again.  Back when Alex was first diagnosed and then again after his surgery that left him partially paralyzed, I remember feeling so much anger and sadness all at once whenever I would be driving down the road and see a "Life is Good" bumper sticker or decal.  But despite everything our family has been through and everything Alex has been through, while life definitely doesnt seem fair at times and it is definitely MUCH harder than I ever imagined...our life is good and I am thankful everyday for the countless blessings we receive. 

This whole experience has definitely opened my eyes to the things that really matter in life.  I used to be so scheduled and have everything planned and organized, I used to worry about anything and everything...in dealing with cancer you quickly learn that it's hard to schedule anything...you learn to live in the moment and seize the day:)  Things that we might have usually put off for years or until we were financially able, we now just kind of go for it and worry about the rest later.  While the last 4 years have been plagued by worrying about Alex's cancer and health, we have also been able to make some of the most wonderful memories cherishing every laugh, smile, and hug.  The most recent adventure was we went on the Magic, part of the Disney Cruise Line.  We decided to do this sometime late last summer I think and really just decided that we shouldnt wait any longer...it had been something our family had talked about for years and something Alex especially had always wanted to do.  I remember being so worried at the time of booking the trip, "what if he's too sick and we cant go", "what if this...what if that...".  But ultimately we just bought the insurance, purchased the tickets, and prayed that everything would work out so that we could go on this trip.  It was a Christmas present for the boys and they were surely surprised.  We did a scavenger hunt on Christmas morning which started at home and then eventually went to Derek's parents house where all the cousins did the hunt together and all learned they were going on the cruise.  It was funny because you really couldnt tell if they were more excited about the cruise OR about missing school for an extra week!  We learned of Alex's scans just before leaving and were happy that we had good news before the trip.  We had a wonderful trip and are just so thankful we got the opportunity to go.  You never know where life is going to take you...at any moment something can happen and your whole world changes...make the most of every moment and live for today!  Of course these are things that you hear but we tend to forget them...until its either too late or until you're dealing with a life circumstance that is a reminder of those very lessons every day.

And now, for some GOOD NEWS in the Green family household...our family is expecting a new baby coming this August!!!  The boys are totally excited and while we are a little nervous (its been awhile since we've had a baby in the house), we are 100% excited too!  This is such a blessing for us for so many reasons and we cannot wait to meet this little baby:)  The boys are excited to be big brothers and I know they are going to be awesome at it!  Alex LOVES babies and Jacob is just excited now that HE can get to be a big brother to someone else.  We will be finding out whether it will be a baby brother or sister so stay tuned:) 

We have been through alot in the last 4 years, but I have said this before and I will never stop saying it, God is Good!  While it can be SO incredibly hard to see that sometimes...and while we can't explain why things happen or why the road we are on is what we've been given...it all comes down to trusting in God.  There are so many lessons we can learn in being patient, in being kind and generous, in loving others (even when its hard to)...we want answers, we want proof, and we want these things all on our own time...but thats missing the point.  We aren't on our time, we are on His time.  Alex was diagnosed when he was 5 years old with a huge mass that encompassed his entire kidney and had spread to his lymphnodes and lungs...I remember the doctors looking at us like "How did you not know?"  At any moment that mass could have burst, it could have taken over other organs, it could have killed him, there are so many possibilities of what couldve happened...but here we are 4 years later...Alex is 9 years old (almost 10) and is like a young man.  While he still may be battling, he has grown so much and in so many ways.  I am SO incredibly proud of him and Jacob in all that they have been through...and I am SO incredibly thankful for each and every moment with them and with our family, together as one.  We don't know what the future holds and thats ok.  For now we have each other and we are happy, and for me...thats all that matters.

We will have scans again in, well I guess in about 4 weeks from now...until then we continue this chemo regimen and continue to pray for healing that only God's hand can do.

With Faith, Hope, and Love Always,
The (newly expanding) Green Family

Monday, January 6, 2014: The scans went well last week, tumors in his right lung are stable meaning not growing, which is good. We will continue this chemo regimen and rescan in 6 more Weeks. Alex is feeling great and we will update once we get back from vacation.  Cruise boat leaves in a few hours!


Monday, Dec. 30, 2013:  As 2013 is coming to a close, we look back upon the last year as a blessing.  Another year with our family of four, another year of memories made and smiles shared, another year of living with Alex's cancer but not letting it win.  The year started out rough in that we learned of Alex's second relapse and were faced with the choice of whether to do clinical trials or to stop treatment...for us it was no question that we would fight until the end and try whatever we can to hopefully find a cure for Alex's disease.  This past year was also difficult in that we lost several fellow cancer fighters and sweet innocent children.  Trevor Blake, Gabriella Miller, Elle Howdershell, are just a few of the beautiful children who ultimately earned their wings and found their cure in Heaven.  Our hearts ache for each of them everyday...they will NOT be forgotten and those who are left here will continue the battle on behalf of them and all of the kids who continue to fight. 

We learned a lot this past year and hopefully educated some about the injustice in the amount of funding (or lack of) that pediatric cancer research receives.  Our 5th Annual Alex's Walk-N-Roll Toward Wellness was a huge success in that we once again broke our past years' record in participation and funds raised; this year with the help of Arms Wide Open/The Truth 365 we raised a total of $25,000.00 for Wilms Tumor Research!  We were so thankful and truly blessed to have surpassed our goal of $10,000.00 and want to thank each and everyone of you who came, walked, ran, rolled, donated, sponsored, volunteered, etc...without you this event wouldn't have been the same...THANK YOU!  We will be kicking it into high gear at the start of the new year to announce more upcoming events to help raise awareness and funding for Pediatric Cancer Research...so stay tuned:)

Alex's scans as I mentioned in the last update are set for tomorrow morning.  We will be at Fairfax at 10:00...all 4 of us are going.  If you read this update and think of it tomorrow, please say a special prayer for Alex.  We know how critical each scan is and while we have to give it all to God and just put it in His hands, it is hard to not be fearful and filled with worry.  We know first hand how merciless Cancer is and just how much control it can have on your life.  The treatment Alex is on now he tolerates pretty well...most people don't realize he is still taking chemo daily.  We are thankful this treatment has been well tolerated and are hopeful that it is still working.  We don't know what our options would be at this moment if the chemo were to stop being as effective, we will cross that bridge if and when it comes.  But for now, we are praying that God will work a miracle in Alex and provide complete healing that we know he is very capable of doing.  We don't know what God's answer will be to that prayer we have prayed a million times, but we will wait patiently by faith in the meantime.

Thank you for your prayers as always, we will update the site once we have results.  Alex has a follow up appointment on Thursday, Dec. 2nd. so we expect to know by then at the latest.

Merry Christmas and Happy New Year to you and yours!  May 2014 be a year of good health, happiness, and love for all!

With Faith, Hope, and Love Always,
The Green Family

 
 
 
 
 
Thursday, Dec. 12, 2013: Alex's next scans have been scheduled for Dec. 31st and our follow up with the Oncologist is Jan. 2nd. We are thankful that his blood counts have been stable and unaffected by this chemo trial he is currently on so he can continue going to school, playing sled hockey, etc. He still goes the clinic for weekly blood draws but he is pretty much now accustomed to that and it doesn’t bother him nowhere close to what it used to. Other than a little stomach bug we think he had a few days ago, he seems to be feeling well. We ask for prayers that the next scans will show that those 4 spots are gone that would be a Christmas miracle for us and would allow us to start 2014 on a good strong note!

I am also asking for prayers for a good friend, my 'soul sister', Jen Seigel whose son Alex is at home no longer on treatment because his cancer was growing despite the trial chemo he was on. They are anxiously awaiting another trial to open however learned yesterday that they didn’t get the spot they were hoping for and will have to continue to wait. The trial openings are a lottery system and sometimes there are several children waiting for 1 opening. It’s devastating and heartbreaking and I don’t understand it...but that’s how the system currently works. I wanted to also share an update Jen wrote on her Alex's CaringBridge site as it was so beautiful and touching. Below are the words of my friend Jen:


Written by Jen Seigel

"Peace Be With You"
Dec 9, 2013 11:32 PM
Some of my happiest moments are when I am lying in bed next to Alex as I am putting him to bed at night. He is such a good cuddler and knows how to snuggle into every nook and cranny like a perfect mold. He says the funniest, sweetest things as he procrastinates about going to sleep. We tell stories and talk. Sometimes out of the blue he will say the strangest things as he is about to be asleep or after he is asleep. Once he awoke and whispered in my ear, "tell Nana to never give up."
Tonight he had been sleeping for about 15 minutes. I was laying there with my mind racing with worry. The usual. He then says to me, "peace be with you". His eyes were closed as he said it and stayed asleep. It took me somewhat off guard. I just kissed his head and said, "and also with you".
Lately I have been trying to hand our stress over to God. There is something very peaceful about that. As much as I question what and why this is happening, at the end of the day I have to put it in his hands. He gave us these wonderful boys but we are all his. We all return to him someday.
Life is hard and seems to only get harder around here. Alex has been off his study for about a week and a half. We found out his tumors are growing again. Not a huge surprise but it did take me off guard this close to the holidays. We are so thankful to have made it this far but why did this have to happen at this moment. He isn't feeling well and is uncomfortable.I have been trying to make this holiday extra extra special but once again cancer is robbing us of being able to enjoy it. Cancer really sucks. It is a cruel B. I feel the struggle of it trying to pull Alex from our arms as we hold on tight. We won't let go without a fight.
Cancer has thrown us into a new world. A world that one can only understand if there or been there. It is not a good place. When Alex was first diagnosed and had such a good prognosis I carried a feeling of guilt with me when I was on the oncology floor. I was so thankful my child had the "good kind of cancer". But guilty that I was around other families not so lucky. I didn't feel deserving to be in their presence. Sounds weird I am sure. But here we are now. We are one of those families. The ones who keep our heads low in clinic b/c talking to others hurts too much.
Alex was lucky enough to have several months of feeling good while on the last phase one study with minimal side effects. It brought him back to a state of happiness and allowed us to make many more memories. Including a wonderful trip to Florida. We are open to trying another study if one presents, makes him feel better and has minimal side effects. You never know what is on the horizon. For now, please pray that our sweet boy feels better and can enjoy his christmas. He deserves to wake up and feel the magic of christmas morning. Mason deserves to also have a normal a life as possible. He is an amazing son and brother. He helps Alex walk, puts on Alex's shoes and ties them and runs around getting things for Alex so we can stay where we are holding him. It is a tall order for such a young boy. He does it without complaining and makes us so proud.
We hope a christmas miracle happens for all that are wishing. And for those who are hurting for any reason like we are, I say, "peace be with you".

Asking for prayers for Jen, her husband Chris, her sweet Alex, and his twin brother Mason. Please rally around them as you have so graciously rallied around our family.

Thank you for listening and for your prayers.

With Faith, Hope, and Love Always,
The Green Family

Wednesday, Nov. 13, 2013:  Thank you to everyone who follows Alex's site for your patience with me...I haven't updated for over a month and I apologize for that.  It has been an up and down month.  Several kids that we have known or have been following their battles, have passed recently and that has been very difficult.  It is so heart-wrenching when you learn of a child passing...you think of the parents, the siblings, the school friends, but most of all I think of all of the things that child must have gone through leading up to the days of their death.  For adults, death can be a complicated thing to comprehend...it is unfair that children, little sweet kids, have to learn that they are going to die and then they have to try to make sense of it.  On October 26th, Gabriella Miller - one of the amazing children who was going to speak at our walk - passed away in her home with her family by her side.  She was 10 years old.  Gabriella, like Trevor, was kind of a local hero.  She raised so much awareness and funding for pediatric cancer and just had this amazing firecracker personality.  She was funny, incredibly smart, creative and artistic, but most of all she was deeply compassionate.  Alex and I went to her 'Celebration of Life', this was the second one we went to in the last few months.  Words cannot express the pain and aching that we feel when a child passes...I can't imagine what the child's parents go through...the pain and emptiness they feel...and for all of us around them, we just feel defeated.  Trevor was a hero amongst us, when he passed it was like a major emptiness in our hearts and a huge defeat in the battle we are facing.  He was an old soul who was so mature for his years, he had a heart of pure gold, and his bravery through every round of chemo and every trial they took part in was just so inspiring.  Gabriella too...she was so resilient, so ambitious, and so brave, to say that she was an inspiration is an understatement...how can God take these amazing kids from us?  I cant help but wonder what awesome adults they could've grown up to be if they were only given the chance.  I know that I will NEVER forget these children as they have a permanent place in my heart.  I only pray that the world doesn't forget them either and that we continue to rise up and come together to find cures and treatments for these kids' diseases. 

Our fighter is doing well...he has been doing pretty good in school (he has been able to go on a regular schedule which is great) and he has been doing amazing in Sled Hockey:)  For 9 years old he hangs right in there with the big guys:)  He's coming around this season to learning the rules and getting the big picture in cutting down angles and anticipating plays.  Derek and I are so proud of the athlete he is, he never ceases to amaze us!  Last weekend Alex and his team (DC Sled Sharks) got to play the NY Rangers sled team in Central Park, NY!!!  It was an unforgettable experience.  The weather was beautiful, the sled sharks won, Alex scored a goal on a breakaway and he just had an awesome game!  Also, there was a camera crew at the game who apparently have been following the NY team around and who are doing a 60 minute piece on Showtime that is to air Dec. 4th.  Not sure if Alex or any of his teammates will be in the documentary but if you get Showtime, check it out!  Even if they aren't on the big screen for a few minutes, I am really looking forward to watching the documentary on Sled Hockey!  I am so thankful that there are organized sports for various disabilities...keeping Alex involved in sports is HUGE for him and his naturally competitive spirit!  Go Sled Sharks!!!  Below are a few pictures from the game and NY (I especially love the one of Alex and Jacob on the ferry, Alex put his arm around Jacob and then looked back at me just in this happy with the world kind of way, like everything is right and perfect):
             

                  

Alex did have his scans on Monday, Nov. 11th.  These were the first scans since his surgery and we were really hopeful that they would show no signs of tumor as the surgeon was confident he removed both nodules from before.  Unfortunately, we didn't get the news of NED which is what we were hoping, but while we were upset initially we are focusing on the positive.  The scans showed 4 new spots in his right lung...these spots are definitely new but they are very small (the largest is 6mm).  The spots themselves appear to be somewhat filled in but also somewhat hollow...The questions then presented are 'Did these spots grow in the weeks that Alex wasn't on chemo leading up to and after his surgery and now the chemo he is back on is working in hollowing out those spots?' OR 'Have these spots been growing since surgery and are filling in while he is on treatment?'  Unfortunately we wont have an answer to this for another 6 weeks as we will continue taking this chemo for 2 more rounds then scan to see what these spots look like.  The spots are too small to remove surgically at this point, if they were to go in most likely they wouldn't be able to see them (that 'tumor paint' technology can't come soon enough!).  The other thing that presented on the scan was an area of air and fluid that is located between his lung and his chest wall.  While this isn't normal this isn't necessarily an issue unless the area grows or causes Alex any pain or difficulty breathing.  This isn't anything they would want to treat right now anyway...this is probably the same area of air/fluid that was left after Alex's chest tube was removed following the last surgery.  Because his right lung is now smaller from removing various sections of it in past surgeries, the body I guess will fill any space that isn't being used...its not a problem unless the air/fluid area continues to grow and starts affecting his lung.  His remaining kidney and abdomen all look good which is good.  I did ask about the possibility of a lung transplant at some point...mainly I wasn't sure if this would even be an option and wasn't sure at what point we would do that...we will discuss this further with Dr. Dome but basically the response was that it would definitely be considered a high-risk procedure and that we wouldn't do anything like that at this point because it is so high-risk and because the side effects and long term effects of doing that are so great (I'm not sure what they are but will be looking into that further and talking to Dr. Dome about that).  We just cant help but wonder why these cells keep forming in his lung and if it is only the right lung (which it has been with these relapses) then would a transplant or removal or that lung be a viable solution?  Its hard to know what the answer is but we will keep pursuing all avenues of treatment to keep up our fight.

We haven't talked to Alex about this yet and most likely wont until after we get the next scans in 6 weeks and we know what we are dealing with.  He has been in a pretty good place mentally and is adamant about being cancer-free so I don't think we want him thinking anything different than that right now. 

Monday evening was pretty tough for us yet again...we got the email from our Oncologist letting us know about the 'several new spots' and we just felt empty inside.  It was like almost a disbelief for me because I was really expecting to hear that we were starting again with a clean slate following the surgery.  Alex's cancer is becoming so relentless in that it seems as though the second he isn't taking chemo the cancer rears its head again and starts growing.  I am in disbelief because if you were to look at Alex, you would probably not even know he has Cancer.  He is so strong, he seems so healthy...I just don't understand.  I feel like we are doing everything we are supposed to be doing, giving the boys healthier foods, getting rid of all our plastics and replacing with glass (we did that during the first diagnosis), giving all control over to God, praying constantly, taking all of Alex's meds on schedule, talking relentlessly to the boys about the importance of taking care of our bodies, etc...I just don't know what else we can do and its so frustrating and that is where the defeated feeling comes from I think.  I am just venting though and I know that we will continue the fight...we will continue doing all of those things and staying positive...in the words of Alex's favorite wrestler John Cena - we will "NEVER GIVE UP". 

So while I am upset that my update and news today isn't what we were all hoping and praying for, we will keep going in this fight.  We have been through a lot and can get through a lot more if we have to...whatever we have to do for our children...we will do!

Thank you all for your continuous prayers for Alex and our family. 

With Faith, Hope, and Love Always,
The Green Family

Wednesday, Oct. 9, 2013:  I am always surprised when I come on this site to post updates at how much time has gone by since the last "update".  So much has happened over the last few weeks, pretty much all very positive!  We had our 5th Annual Alex's Walk-N-Roll Toward Wellness event on Saturday, September 28th.  It was an absolutely beautiful day and we were overwhelmed by the number of people who came out to show their support, participate, and help us in raising awareness and funding for Pediatric Cancer Research!  All in all we had just over 300 people participate and we raised $17152.66 for Wilms Tumor Research through Arms Wide Open and The Truth 365!!!  And to top it off, Arms Wide Open and The Truth 365 is going to bump us up to $25,000.00 even.  The money goes to their dream team of Pediatric Cancer Oncologists who will use it specifically for Recurrent Wilms Tumor Research!  Our goal was $10,000.00 and after many months of preparation, prayers, and hard work, through God's grace we surpassed our goal by far!  Additionally, we collected 4 very large bins of brand new toys to be donated to children fighting pediatric cancer at various local hospitals through Trevor's Treasures - this was our biggest collection to date and I am super excited to get to deliver these to Trevor's family soon!

We welcomed some amazing guest speakers this year and are so grateful to each and everyone of them for joining us, sharing their personal stories, and continuing to inspire us to do more to make a difference!

For those who might have missed it, Alex and Len Forkas (Founder of Hopecam), finally got to compete in their long awaited and highly anticipated 100-yard Wheelchair Dash.  Here is a video of this event courtesy of Mike Gilette with The Truth 365.  http://www.youtube.com/watch?v=x8PZrOFURbY

On an emotional level it was amazing to stand in front of that many people knowing they were all there to not only support Alex and our family, but to support all of the kids and their families fighting this battle.    Thank you to all of our participants, our sponsors, our volunteers, and to our AMAZING guest speakers who all contributed to making our 5th Annual Alex's Walk-N-Roll Toward Wellness a huge success!  We cannot thank you all enough and look forward to seeing you all hopefully next year!  We will be posting a slide show soon on our Events page of this years event so check back!

Alex continues to do well after his surgery.  Can you believe that he did that 100yard dash just two weeks post op?  He is one tough cookie that's for sure and he never ceases to amaze me.

He was back to school after a little over a week off and was feeling pretty much back to normal.  He just started up chemotherapy again this past Monday and so far so good.  We will do 4 cycles of this treatment which is daily oral chemotherapy.  Each cycle is 3 weeks so we have about 3 months to go which brings us right to the new year and then we will be done!  It's funny because I always question whether I should be confident and write "will be done" or to be cautious and write "hopefully be done" or "possibly be done"...but then remember something that Alex just reminded me of recently:

        We were at Children's for his first appointment with the Oncologist after Alex's most recent surgery. Alex was being Alex and kind of moving all around the room until he positioned himself with my iphone and sat on top of the window sill.  He likes to keep himself busy when we talk, I think so he doesn't really hear what is being said about him, even though he always tunes in somewhat and then bursts out with an occasional moan or question.  
        
                                        
                                    Alex's Instagram Pic                             Alex "listening" to biopsy results
      
    So I'm talking with the Oncologist and Alex is on my iphone when the Oncologist starts telling me about the biopsy of the tumors removed from Alex's lungs.  We learned that the 2 spots we were watching were removed and both tested as active Wilms Tumor - pretty much what we anticipated.  The third spot which was removed and was questionable was only inflammation, most likely from a past surgery and nothing cancerous.  At that, Alex blurted out, "So I have no more Cancer?"  This is such a difficult question I think but before I could respond, the Oncologist said carefully, "Well, we took out all of the cancer we saw, so we believe you do not have anymore cancer."  Alex went with this cheerfully and said, "Yay!"  

    In the next breath however, the Oncologist started telling me that we would go ahead and start chemo and do 4 cycles, etc etc.  Alex immediately asked, "Chemo???  Why do I have to do more chemo if I don't have anymore cancer?"  The Oncologist tried to explain but Alex just wasn't getting it, then I tried to explain and he kind of got it, but regardless was upset.  We talked about how we could do this and how the chemo is oral and that we just need to make sure that if there are any tiny cells left, that we get them with this chemo before they can grow.

        So that was the conversation to kind of give you an idea of what Alex heard.  So later that day I was going through my phone and saw that Alex had posted on my Instagram (which I never use btw and apparently my account has become really his account...lol) a picture of him smiling with big letters saying, "I am Cancer Free!"  As you can imagine friends quickly congratulated him on this but also questioning at the same time.  I wanted to be positive in my response, but I also didn't want to get anyone's hopes up...I don't know why, maybe because it is so hard getting truly excited about these victories because it seems like the battle is never really over and there is always bad news around the corner...but regardless I decided to respond to the Intragram inquiries over Instagram.  I wrote how yes we were happy that the Oncologists believe the surgery went well and that they feel they got all of the cancerous spots but that we won't really know until the next scans (which are scheduled btw for Nov. 11).  I wrote how we are happy but cautious and could still use prayers over the next few months.

        Well a few days passed and I forgot all about it, Sunday morning we were at Jacob's flag football game and Alex was playing with my phone.  All of a sudden he got real upset and asked me why I wrote what I wrote.  I looked at my phone and realized that he was referring to my Instagram comment.  When I looked at Alex I could see the pain he was feeling...the pain that I caused.  At first I thought I would try to explain why I said what I said but all he kept saying to me was, "No Mommy, I beat Cancer!  I am Cancer-free!"  We hugged several times and I felt horrible
...I was so incredibly saddened by the thought that I had possibly made him question his victory...

I guess I wanted to share this story because Cancer, as we all know but sometimes forget, is very much a mental battle just as it is physical and spiritual.  On Sunday, it was once again my 9 year old amazing son who was teaching me yet another lesson.  I am always telling Alex how I want him to really BELIEVE and KNOW it in his head that he will beat cancer, yet the first time he demonstrated this to me, I made almost made him doubt himself because of my own fears...We continue to learn from our kids, I think all of us can agree to that.  Through them we can learn humility, unconditional love, strength, innocence, we can learn SO much from them...if we just take the time to stand back and LISTEN.


Tomorrow, October 10th, will be 4 years to the day from when Alex was diagnosed with Stage IV Wilms Tumor at just 5 years old.  It is crazy to think that 4 years ago we were thrown into this new world of Pediatric Cancer, and believe me it is a totally different world, thinking that the next 6 months of treatment would be difficult but really unknowing that the diagnosis is in all actuality a life changing event.  The organization name Life with Cancer, really means just that...it doesn't mean "Temporarily living with Cancer", or "In this moment living with cancer" which is what it kind of seemed like it would be to me 4 years ago.  No, a cancer diagnosis really means "LIFE WITH CANCER".  Even if you beat it, you will have scans and appointments and possibly new medications and disabilities for the rest of your life.  By now you've probably heard that 1 out of 5 children will die from Cancer.  But did you know that that statistic does not necessarily mean 4 out of 5 children will live?  No, 1 will die, 1 will die after battling for over 5 years, two will survive but with complications and life changing side effects, and only 1 - yes 1 will live without any major side effects.  There are so many misconceptions about Pediatric Cancer, so many that when your child is first diagnosed, you not only can't believe them - you don't want to believe them.

With all of that said, 4 years ago I had no idea how we would get through each day, financially, emotionally, how we would get up in the morning or make dinner at night, I had no idea just how we could get through any of it.  And here we are now 4 years later, Alex is 9 years old, Jacob is 6, and while we are still battling Alex's cancer, we have been so incredibly blessed.  We have been blessed to have 4 more years together as a family.  We have been blessed to have celebrated 4 more birthdays, we have been able to take family trips together, we have been able to create 4 years of memories despite treatment.  While I would have never imagined our lives would be like this, I am forever thankful to the moments we have gotten to enjoy together and I look forward to all of the wonderful memories coming that have yet to be made!!  So with that, Alex has indeed beat his cancer again...he is taking chemo now just to make sure that we have kicked it in the junk (according to a funny bracelet that Alex got at Curefest which said - Kick Cancer in the Junk - the boys loved that one! LOL).  We will have scans in a few weeks - Nov. 11 - and will update then (if not sooner).

Thank you all so much for your continued support and love for Alex and our family!!!  

With Faith, Hope, and Love Always,
The Green Family

 
Thursday, Sept. 19, 2013:  Well it was a successful surgery!  We are very happy, in that scared-to-get-too-happy-so-we-are-cautious-as-we-smile kind of way that we are so used to now.  We were VERY nervous about this surgery, with the complication Alex had the last time to anesthesia and with this being an "open" instead of laparoscopic procedure...we were on edge about the whole thing.  BUT thankfully both surgeons came out with pretty good news about how it went.  Surgeon #1 operated on Alex's lungs.  He removed both nodules we knew of and he removed 1 add'l questionable spot that he feels was very close to the miniature spot that showed up on the last CT.  Other than those spots he reported that he was very happy with how Alex's lungs look - overall they felt and looked pretty healthy!  Surgeon #2 did a simple procedure looking into Alex's bladder at a spot that has been some concern but nothing they thought would be tumor instead some kind of calcium deposit from his spinal cord injury last year.  Again pretty good news in that the Surgeon found LOTS of bladder stones and calcium deposit.  He did take a biopsy of 1 of the spots but based on the bladder stones in there he felt that anything we were seeing on scans were just that and nothing further.  We have not gotten the confirmation yet of this from the biopsy but hopefully in this case no news is going to be good news!  Bladder stones we have learned are fairly common for people with paralysis and Alex will need to just really work on drinking more water and staying hydrated.  We always push this anyways with him since he has just the 1 kidney but now we have even more of a reason to help remind him!

So for now we are very happy with the results, but again cautiously happy.  I don't know if we will ever experience that euphoric elated happiness we felt the first time that Alex was cancer-free...but then again, never say never:)  I can only pray that down the road we will get to that point where we can finally say our baby has been cancer free for 5 years or 10 years or 20 years (how awesome would that be - but that seems SO far away to me). 

So Alex was home from school this week but is feeling better and will most likely return next week, with limited activity obviously.  Thank you so much for all your prayers for our Alex...we feel blessed that we can report the surgery was not only possible, but that it went well!

With that said the plan for him now is to go ahead and start the chemo regimen he was on previously and to continue that for 3 months.  The thought is that since this chemo seemed to be working for Alex, if we continue we are hopefully killing any tiny minute cells that might be in his body.  We will have scans again in about 8 weeks from now (well 6 weeks once we start chemo) I believe. 

While chemo is tough, Alex is tougher and 3 months is just around the corner.  Not like I am rushing time by any means, I have learned through this that each day is a true blessing.  Someone said at Curefest and it really stuck with me, that having our baby was a true blessing and every day after that which we are together is just icing on the cake! I loved that and really try to cherish every day that I can hold Alex and Jacob and just feel blessed that even when they are fighting or yelling or slamming doors, that we are blessed to have that noise in our house.  We are blessed the boys have the energy to fight and even have each other to fight with!  Of course there are many times when they play nicely, when they miss each other so much, when they help each other out (usually when no one is watching)...siblings will be siblings and no matter what they are doing, we treasure their every being!

I've said it numerous times but we are super excited about our upcoming walk!  It's only a week and a half away (AGGGHHH - trying not to panic).

You know it's funny, I was thinking about this the other day.  When Alex was first diagnosed, there was NO way I could have had the energy to do all this.  I don't know if it's because over time you kind of get numb with everything or if over time you are just SO tired of watching your child endure such devastating treatments but I have so much energy when it comes to putting on this walk!  I praise God for giving me this energy and motivation to help with this and I feel in my heart that this movement that the community has right now to push for more funding for Pediatric Cancer Research is really going to make a difference!  Our children are suffering and its not right.  When there is something in the world that isn't right or just, we fight.  This shouldn't be any different!  5 years ago I was a mom with 2 beautiful healthy children, and while I had a heart for pediatric cancer and started donating to St. Jude's long before Alex's diagnosis, NEVER did I EVER think I would one of the mother's I'd heard on the radio-thon's with a child who has cancer.  NEVER would I have dreamed that our healthy, active, athletic, beautiful, baby boy would have cancer.  I was so healthy during pregnancy, I followed all of the eating rules (what to eat, what not to), with him I craved Orange Juice and fruit, my mother-in-law and husband painted the nursery and I wasn't even allowed in to look, I didn't smoke, I didn't drink, the list goes on and on.  Yet somehow, someway, Alex got cancer.   I think about choices I made in High School or College, but then I am reminded that many people make similar choices and have healthy children.  Many people make unhealthy choices all the way until they have a baby and they have healthy children.  I am saying this because there is no rhyme or reason for a cancer diagnosis...yes some are hereditary...but those are few and far between.  Children are being diagnosed everyday and children are dying from their disease everyday.  We MUST make it a priority to fund research to treat our children!!!  There have been many times in history when we as a nation have proudly come together to change what we believe in...what about our kids?  Can't we as a nation come together to urge the government to prioritize funding for Pediatric Cancer Research?  Shouldn't children come first?  Aren't we failing them if we can't do this?  I just don't understand...I was shocked when I learned about the statistics and am still confused to this day as to why or how that 4% number was chosen.  If you aren't familiar with what I am talking about, please visit www.thetruth365.org and watch the 1 hour documentary for yourself.  The documentary won 3 awards and it is definitely worth taking an hour out of your day to watch.  Share this with your friends and really help us spread our message so that we can create real CHANGE! 

Thanks for listening and as always thank you so much for your prayers. 

Looking forward to seeing LOTS of you next weekend!

With Faith, Hope, and Love Always,
The Green Family


Sunday, Sept. 8th, 2013: What a weekend!!!  We had an amazing weekend, my heart feels so full this evening to be able to share with you all of the wonderful things we did:)  Saturday we started off the day with my company at our annual company picnic - the boys look forward to this every year and we had so much fun!  Saturday afternoon we went to our church to celebrate Alex's choice to be Baptized to proclaim his love for Jesus!  He made this decision a few weeks ago and was SO excited about it (as were we all).  At the company picnic he even told the lady doing the Character drawings that he was going to be Baptized that night:)  At church he also spoke to the kids church classes about our walk and handed out our flyers...I heard from his cousins who were there that he spoke for quite some time (about the walk, his cancer, being in a wheelchair) for which I am so proud of him.  He has come SUCH a long way and is so inspirational to me!  We had a small group of family and friends come back to our home to celebrate his baptism with him!

This morning we got up early to head to Minis Mission Kick-It Tournament (www.kick-it.org
) where we spent the entire day playing Kickball to help raise money for Pediatric Cancer Research!  TEAM ALEX was coached by the one and only Alex Green and we had a BLAST!!!  Below are just a few pictures from today, I will be adding more on our Photo Album page in the next few days or so.  The Minis Mission tournament raised $21,000+ funds which Jeff Gordan matches making a whopping $42,000 raised for this cause near and dear to us!  Mini Timmy Tyrell is an AMAZING kid, at 9 years old he is just so mature and has so much compassion for others, we are SO excited that he will be speaking at our 5th Annual Alex's Walk-N-Roll Toward Wellness 5K.  We can't wait for you to meet him and to hear this amazing boy and his efforts in the difference he is making for Pediatric Cancer Research!
 
     
  
So our weekend was perfect and I will go to bed tonight with a huge smile on my face and in my heart:)

Speaking of our walk, registration is online for the 5K.  WE are encouraging all who want to attend to register early.  The price increases Sept. 18th so check out our Events/Fundraising page for details.  We also have a facebook page which you can check out, like, and share at www.facebook.com/events/alexswalknrolltowardwellness. The event is open to the public and free if you just want to come, watch, listen to music, participate in the raffles, buy a t-shirt, do some moonbouncing, facepainting, etc...the registration is only for those who will be walking and rolling with us on the 5K.  We are SO incredibly excited about this year's walk and hope you will be able to join us!  If you are not able to join us but want to contribute, there are 2 ways you can do so:

1. Donate directly to Arms Wide Open/The Truth 365 but make sure you put the subject line "Alex's Walk N Roll Toward Wellness" on the check.  Mail this to: Arms Wide Open, PO Box 258, Marlboro, NJ  07746

2. Donate through our website on the Donations page and email me at jensanden16@hotmail.com if you would like to have a tax receipt for your charitable donation.

On another note, Alex's surgery has been scheduled for this Thursday, Sept. 12th.  He is getting pretty anxious about it and does NOT want to have another surgery.  That said, we will get him through this as we have all the others and are praying for God's touch and that they are able to get all the tumor cells out!!!  It is frustrating as there are new developments in research that we have been discovering although they have not been made available yet to humans...I feel like we are just on the cutting edge of benefitting from these new techniques but they cannot come soon enough!  There is something called Tumor Paint that was developed in Seattle that basically is injected into Cancer patients and then during surgery the tumorous cells literally are highlighted like paint in the body.   This works kind of like how contrast works on a CT scan except it is visible to the surgeon - what a difference this will make - if only it was available like yesterday!!!  Anyway, that is why we are getting involved in funding research for new drugs, new techniques, things like that to really help push cancer treatments and development.  We will be in the hospital for about a week (4 days for sure but we are anticipating longer since that always seems to be the case).  Please pray for strength/comfort for Alex and rest and good hands/decision for his surgeons this week...

With Faith, Hope, and Love Always,
The Green Family

 
Thursday, August 29th, 2013:  So the scans were a week ago and we met with our Oncologist Monday to discuss the results.  I apologize for not writing sooner but I guess I needed time to process the results myself.  So I have come to the realization that the results are positive...although complicated.  Which is funny because that is exactly what the Oncologist started off with on Monday when Derek and I were on the edge of our seats holding on to his every word and movement.  At the time I got pretty upset and was trying to see the "positive" that the Dr. was talking about, but after a few days to think it over, I have realized that the results were indeed positive and complicated:). 

The tumors in Alex's lungs have not grown (the positive) although they have not shrunken at all either (the complicated).  I had my hopes so high that the tumors would just continue to disappear since the first two cycles of chemo had so much effect initially, so when the Oncologist told us that Alex's tumors were the same size...I was so disappointed and upset.  Our Oncologist believes this is ideal timing now to have surgery to remove these tumors.  This is also complicated for many reasons...this will be Alex's 12th surgery total, his 11th in just the past 4 years (yes we are just about 4 years - Oct. 10 - from his initial diagnosis).  He has had many "rare" complications from surgery and treatment, something to consider with this upcoming surgery as well.  This is "uncharted territory" as at this point in treatment there is no protocol or standard treatment to follow.  I guess this is the point where it really comes down to whether or not you are happy with and trust your team of doctors, thankfully at this point while we still question everything, we are 100% confident in the team we have and their recommendations for Alex's treatment.  When talking with Dr. Dome Monday, as I sat in my chair and tried so hard to hold back the flood of tears coming out, I noticed the pain in his face as well.  I noticed the silence in the two nurses who stood in the room and quickly came to my rescue with tissues and who looked down at the floor themselves.  I noticed how patiently Dr. Dome waited in the room with me and Derek while I regained my composure and while Derek and I stared off trying to think of what questions we had to ask.  This experience is so incredibly difficult for Derek and I as parents, but I know how incredibly difficult this has to be for the Doctors and Nurses who are fighting everyday for hundreds and thousands of children whom they grow to love.  I am so happy that we have a team who we trust and while I won't hesitate to get a second opinion or to question something I think might need questioned, I am comfortable with where Alex is and am very confident in the team that is treating him.

SO, the plan is for Alex to be scheduled for surgery as soon as possible.  The surgery will be open, not laparoscopic which stinks in that we know he will definitely have a chest tube (I HATE CHEST TUBES!!!) and will be in the hospital for probably at least a week.  Alex was needless to say not happy about the S word.  He HATES surgery and although he does well and now goes back to the operating room with child life fairly tearlessly with the help of a few blinks (DC Children's does not allow parents back in the OR which I don't understand at all).  That said, he hates surgery and is so tired of this whole cancer thing. 

To prepare for surgery he has stopped the clinical trial and is off chemo temporarily.  He was happy about that and has already been feeling better not taking it.  The chemo thins the blood so he has to stop prior to surgery.  We do not have a date yet for the procedure but know we will be at DC Children's in the next week or two.  The two spots are larger than I thought, the largest is 1 inch big and the other is I guess 1/2 inch...so the surgeon should be able to see the spots and easily remove them.  He will also go in and look for any other visible spots to remove.  After surgery the team will decide if Alex will go back on the same chemo meds since his tumors were still stable (just off the clinical trial part of it), if he will need radiation again (if he can have it that is), or what the plan will be exactly.

While initially I was upset, I guess for me hearing the word surgery gets me upset for Alex, I now again have hope.  A good friend encouraged me greatly Tuesday...when I was upset about surgery, she was excited for us..."How wonderful that is that Dr. Dome is recommending surgery", she said, "He wouldn't do it if he didn't think it would work."  She also told me about another boy very similar to Alex with several relapses whose tumors shrunk enough to where they could remove them surgically.  This boy has been cancer free now for 3 years.  While I know every child is different and every case is different, I was able to get out of my slump and discouraged state, and once again have something more to hold on to.  For Alex to have tumors that ARE possible to get surgically, that in itself is a blessing.  I almost feel a little silly now for my reaction on Monday, we are blessed and continue to be blessed through this whole thing.  While this isn't the path I thought I would be on, it is one that we are fighting to rise and conquer!  God is with us, I feel it when I pray, I feel it when I talk to Alex about this stuff, I feel it in my heart and soul and I know that whatever the reason is that we are going through this pain and suffering, His plan is for good and He will reveal that in His perfect timing.  Until then, we will have faith and hope and small glimpses of joy here and there.  We will treasure this time we are given, not knowing what tomorrow may bring.  While Alex is gentle and compassionate, he is also a fighter;  he is tough and he has made it this far with so much strength and courage I am in awe of his resilience.

I love the song, "Oceans", it has become my go to song the last few weeks and the part in the song that gives me so much encouragement is:

Where feet may fail and fear surrounds me
You've never failed, and you won't start now
So I will call upon your Name
And keep my eyes above the waves (when oceans rise)
My soul will rest in your embrace
For I am yours, and you are mine...

Spirit lead me where my trust is without borders
Let me walk upon your waters, wherever you would call me
Take me deeper than my feet could ever wander
and my faith will be made stronger in the presence of my Savior.

Check out the whole song by Hillsong United on youtube (its beautiful!): 

http://www.youtube.com/watch?v=eLqTZ07ja7g


We are working on the plans for this years Alex's Walk N Roll Toward Wellness.  If you haven't checked out our Events/Fundraisers page yet, please do so.  We also have a Facebook page up for the event at www.facebook.com/alexswalktowardwellness We have some AMAZING guest speakers this year who will show you why we gave the theme to our event of "Kids Can Do Amazing Things".  The money raised will benefit The Truth 365 project who gives 100% of proceeds to their "Dream Team" of Oncologists.  If, no WHEN we raise $10,000 or more, they will allocate the money we raise directly to Wilms Tumor Research!!!  This is huge for us and we hope that you will join us at our event.  Registration is online for the 5K, early registration is by Sept. 17th.  The course is timed (we will have various prizes at the end) and is a wheelchair friendly course!  White registration is required for the 5K, the event is open to the public and we will have several Pediatric Cancer Non-profit organizations there with booths and literature to give everyone a glimpse into the world of Pediatric Cancer and their specific missions.  We will also have reps from Scentsy and Grace Adele selling their amazing products with 25% (all of their commission) going to our event, so its a great time to load up on fall scents and start that Christmas shopping!  We will have moon bounces, food, music, raffles, prizes and more so come on out rain or shine and join us for this cause!

September is Pediatric Cancer Awareness month - we are kicking off the month by going to DC on Sept. 1rst for Curefest.  Over 50 Nonprofits will be there all coming together to create one voice in the fight against Pediatric Cancer!!!  It is going to be an awesome day!

Thank you all for your support as always.  We couldn't be where we are today without the help and love from our family, friends, coworkers, classmates, just everyone in our lives! 

I will update again (hopefully without delay) once we know the date of Alex's surgery.

With Love, Hope, and Faith Always,
The Green Family



Sunday, August 18th, 2013:  This summer has seemed to go by so quick...we are already planning for school to start in a few weeks...the boys are excited to get back and see their buddies and to find out who their teachers will be this year.  I cannot believe that Alex is going to be in 4th grade and our little Jacob is already a 1rst grader!  Yikes...where does the time go???  In the beginning of summer we made a list of all the things we wanted to do this summer...we have been checking off quite a few of those things and have had a great summer!  We had a wonderful trip to the beach with beautiful weather and just a fun-filled trip.  The boys did some boogie boarding, we made a huge sandcastle (yes one that people stopped to look at - which was our goal as we had never done this before), we jumped the waves and spent time with our wonderful family.  A few pictures below:



We camped, went roller skating, had fun family tennis games, watched movies, had lots of laughs, and just enjoyed the time together.  The summer went by quick but we made lots of great family memories.

Alex is doing well, he is pushing through this chemo and seems to be adjusting to it a little.  While his hair started thinning out after the first cycle, it hasn't continued so he thankfully still has his beautiful blonde(r from the summer) locks.  He has good days and then days where he just wants to lay around, which is fine for all of us really, we all need a rest day now and again.

Our plans for our walk are coming together and we are SO excited about this year's event.  We will be posting announcements on the home page so check back soon for exciting information about the walk.  This year for the first time we are having a timed 5K event.  Our event is on an all hard surface course and is a wheelchair friendly event!  We will have fun activities for kids and adults alike so bring the whole family!  And while we do not have a team sign-up online, please feel free to make a team, wear costumes, whatever you like - just as long as its family appropriate:)  We will have raffles, prizes, music, vendors (to be announced soon), and lots of fun!!!  Check out our events/fundraisers page for more info.

Recently the Pediatric Cancer community has lost and amazing inspiring super sweet and handsome young man, Trevor Blake.  Trevor was an inspiration to so many.  He was always positive, encouraging, and so incredibly compassionate for others.  Trevor battled his cancer, Neuroblastoma, for over half of his life...and while doing so he and his mother were so strong and amazing throughout the fight.  Trevor started Trevor's Treasures when he went into remission the first time, he told his mom that since while he was in the hospital the toys and gifts people brought made him feel better that he wanted to do that for other kids, hence the beginning of Trevor's Treasures.  We first came into contact with the
organization and I first met Shannon at Inova Fairfax when they brought Thanksgiving dinner in for the families on the unit.  Alex had just had his kidney removed and was in the hospital during this time.  I briefly spoke with Shannon but I was still so afraid and couldn't express really my feelings so I mostly listened to her and Holly the ChildLife therapist talk.  The Treasure box that was on the nurses station was Alex's motivation to get out of bed after the surgery and to do a lap around the unit so that he could pick out a toy.  The Treasure boxes at Inova and hospitals up and down the east coast have become motivation for a lot of these kids to get up when they don't feel like it.  The Treasure boxes are a symbol of what Trevor Blake stood for:  motivation, encouragement, and compassion.  Our family went to Trevor's Celebration of Life and it was such a beautiful event.  Trevor led such a fulfilled life in his 11 years, more so than most adults can say.  I will never forget Trevor Blake or his family...rest in peace sweet boy.     
                                                       

It angers me so much to see these beautiful kids passing...and I can't help but feel like we are failing as a society because we can't allocate the necessary funds to research new drugs and treatments for them.  In this day and age when technology is so advanced and we can communicate within seconds around the globe, we should be able to find cures for these cancers.  For childhood cancer research to ONLY GET 4% of the total cancer research budget, that's JUST outrageous!  I can't sit and watch anymore of these children die without getting involved and doing my part to change this, but we need help.  If you are enraged or feel the way I do about the injustice that we are doing our children, OUR FUTURE...than get involved.  Email your congressmen/women, talk about it - spread the word, WATCH The Truth 365 Project documentary, let's change this for our kids.  Thanks for listening to this rant...

Alex's next scans are August 22nd, we ask for your prayers for continuous good results. 

With Love, Hope, and Faith Always,
The Green Family


Sunday, July 21st, 2013:  We are so happy to post that our meeting with our Oncologist last week went really well -- Alex's scans showed that he is responding well to the clinical trial treatment and the two nodules which were growing quickly not only stopped growing but were almost gone!!!  The spots have hallowed out which is what they were hoping to happen and now Alex only has a ring of tumor cells left indicating where the tumors are...we will continue this treatment for another 2 cycles (6 weeks) and rescan.  We feel SO blessed that this treatment is working for Alex and pray that he continues to be healed.  We have not lost hope and even though its been tough on Alex, apparently he has been handling this treatment better than the Oncologist expected.  When the Oncologist asked how Alex has been feeling, we told him all his aches and pains and issues, but then mentioned that he only has energy to swim for about an hour or so before he gets tired...to that our Dr. said, "Wow, but he is able to swim?  That's great."  So, while it has been hard on Alex and he is taking more naps than normal, we feel blessed that he is able to be home and not in the hospital and that he can go swimming and to the movies and things like that! 

Alex is also happy that he doesn't have as many appointments now that he has gotten through this first 6 weeks.  We only have to go for blood draws now twice the entire cycle so only 4 times in the next 6 weeks which is another big deal for Alex...while he has gotten amazingly used to all the pokes, he was happy to hear he didn't have to get as many!

We are enjoying the summer and I was so fortunate to be able to take this past week off and spend some time at home with the boys.  We had a great week going to our community pool, going to see "Despicable Me 2" (love those minnions!), going to Skyline Caverns, and watching the boys at their church sports camp!

They are making lots of new friends through church and school and we are just so blessed to have so many wonderful people around us.  Thank you to everyone so much for helping us through this and being so supportive to our family.  My heart feels like its going to explode (but in a good way this time) when I think about how wonderful Alex and Jacob's friends are.  This morning at church this boy in Alex's class was talking to Alex when I went in to pick him up...I overheard him saying to Alex, "I really feel bad for people who have cancer, I really like you - you are nice to me.  I hope you get better soon."  I was in awe and Alex just was shaking his head and smiling at the boy.  This little boy was so sincere in his words, I had to tell him how nice his kind words were and to have a great week.  It just seems as though we are surrounded by wonderful people.

We ask for prayers for continuous healing for Alex.

Walk plans are coming along and we will have a link to register online very soon!  Stay tuned and check back often:)

With Love, Hope, and Faith Always,
The Green Family

Saturday, July 6th, 2013:  Happy belated 4th of July to all - we had a great day hanging out with cousins and watching fireworks - thankfully the weather held off and it turned out to be a great summer day! 

We have added a new page to our site.  Please visit "Make a Difference" for a quick link to our petition.  There is new information just released by the research community confirming the promising results for the new chemotherapy drug that we are pushing to be released for our Wilms kids!!!  We beg you to sign the petition (unless you previously sent me your email address - you don't need to do both) and to please share this petition with anyone and everyone of  your contacts.  We have added links to both Facebook and Twitter to make it easier for all to share our site.

We have also added more upcoming events to our Events/Fundraisers site to help connect you with all of the local events raising awareness and funds for pediatric cancers!

On another note, we were deeply saddened this week to see the recent updates on Trevor Blake of Trevor's Treasures.  There are no words that could express our grief for Trevor and his family.  We ask for prayers for him and his family of comfort and peace as Trevor nears the end of his battle with Neuroblastoma, we pray that he knows in his heart just how inspirational he is and just how many other kids he helped along the way.  Here is a link to his mothers recent posts: http://www.caringbridge.org/visit/trevorblake/journal  We will be once again collecting toys at our walk this year to give to Trevor's Treasures, details for the walk will be updated on the Events/Fundraisers page soon.

Thank you all for your continuous support!  We hope you like the changes to the site.  Will be updating here in a few weeks with results of Alex's scans.

With Love, Hope, and Faith Always,
The Green Family

Friday, June 28th, 2013:  So Alex did start a new chemo regimen on a phase 1 clinical trial which involves daily chemo.  This week we just finished our 4th week on this trial and all in all Alex is tolerating it fairly well.  This trial involves two chemotherapy agents both which thankfully Alex can take orally (no port)!  The first chemo is Soferanib, it's in the form of a pill which he takes 6 pills daily (3 in the am and 3 in the evening) 7 days a week.  One of the downsides to this is he cant eat 2 hrs prior and 1 hr after taking it, so literally there is 6 hours during his day that he cant eat...not a good thing when he isn't really feeling like eating too much anyway from being on chemo again.  So far he has already lost 5 pounds, we started him this week on an appetite stimulant to try to help during the hours that he can eat.  The second chemo is Irinotecan, this is in the form of liquid.  He take this once a day for the first week of the cycle (5 days). 

So far the side effects have included pain, tiredness, ringing in his ears, loss of appetite, skin rash, hairloss, oh and (Alex will kill me for typing this so mums the word) but constant diarrhea.  Alex is a trooper as you all know but this all is certainly taking its toll on all of us.  I can't think about everything he has gone through or everything we have gone through because it is way too overwhelming.  It's amazing to me how far we've come...we are going on dealing with this for 4 years and while we have been through so much and our bodies feel 100 years old, it seems like just yesterday when were sitting at Fauquier Hospital, Alex asleep in the bed, all waiting to go home when we learned that Alex had cancer and we were wisped away to Inova Fairfax Children's Hospital.  From going to the first appointment at the Children's clinic practically dressed in pajamas and barely showered, just a wreck; to now functioning with all of this while working, continuing school, activities, and now advocating for more research and awareness for this disease...I just never pictured our life like this.  That said, I love our family and can't imagine my life without them. 

We have had to face some pretty tough issues lately with this latest relapse, things that Derek and I have never spoken of before, and its so incredibly difficult...there is no book or counseling or help that can truly prepare a parent for possibly facing losing their child.  At times it's hard to find hope but I constantly find myself with nothing else to do but to look up and pray.  God is the ultimate healer and I am putting all my hope in Him.  When we pray, God always answers...sometimes he says "yes" - sometimes he says "no" - and sometimes he says "wait".  I will wait for God's perfect timing and believe that he can cure Alex of his cancer...I just am praying with all my heart that he doesn't say "no". 

The plan going forward is to rescan in 2 more weeks.  If we see improvement or stabilization, we will most likely continue with this trial.  If we do not see either of those, then we will discuss other options.  We could possibly do radiation or if the spots have grown significantly larger we could try to remove them again surgically or we could go to another trial.  The difficult thing with going from one trial to another is that many of the trials require a certain amount of wait time before you can start new medication because they need to ensure the meds from the first trial are out of the patients system before starting a new trial.  Having a wait time doesn't settle well but we will deal with that if/when it comes.

Alex and Jacob finished the school year with great grades and great memories!  We are so incredibly fortunate to have the boys in a school that is so supportive and wonderful!  Alex has lots of friends who have basically gone through his treatment successes and relapses and have supported him along the way.  He has a wonderful group of friends and this was confirmed when he had to answer a survey for Children's at the start of this trial...he was very honest...a lot of the survey was about how he feels about treatment, support at school, support from friends, family, etc.  He opened up about how he does feel scared, nervous, anxious about cancer and treatment but when he spoke about how he feels like he has lots of friends, that he makes friends easily, that he feels totally supported by his friends at school, that he sticks up for them and they stick up for him, I almost started crying.  As a parent you want your kids to be accepted and loved, you want the world to see them the way you do, but unfortunately that isn't always the case and kids can be mean.  When Alex started 3rd grade this year he wore a hat because he didn't have hair, he also was returning to school in a wheelchair.  We were so nervous and worried that kids would make fun or say things to hurt him, but the opposite happened.  While some kids were just curious and would ask about his chair and ask about his hair, they were just curious and in no way were being hurtful.  Alex had to learn how to answer those questions because he didn't like talking about it, but he grew in that and now handles it all very well.  Kids would fight over who could push him in his chair or carry his lunchbox for him...we are truly blessed in that way.  Jacob eased right into Kindergarten and made a lot of friends as well.  He excelled in school and Derek and I are so proud of him!  If you ask him he will tell you that he doesn't like school, but deep down inside I know he only says this because he hears the older kids saying it and he really loves all of it!

This summer we are laying low, although we did sign the kids up for a few sports camps.  Alex has had a few sled hockey practices as well and its just amazing watching him out on the ice.  He can be tired and feeling bad but he gets on the ice and he just glides and smiles.  He loves it so much, the competition, the exercise, scoring goals:)  This year his cousin Eddie and even Jacob are able to join the team so they have really been having a blast with it!  This summer we continue to focus on our family by spending quality time together, taking small trips here and there, and hugging each other as much as possible.  I have kept busy in joining the community of parents who are also advocating for awareness and more funding for pediatric cancer research.  I have within the last few months met more people (kids, parents, and fellow advocates) than I have in the 4 years of living with Alex's cancer...while each child's story is unique, we all hold this common painful bond.  Alex and I also recently had the opportunity to join another set of parents to meet with Senator Warner's assistant to discuss toxic chemicals found in everyday household products - how there needs to be more regulation and actions to reduce those toxins AND to discuss the need for more funding for pediatric cancer research.  It was a great experience for both Alex and I and I feel as though this is just the beginning for me to get more involved and to join the movement to change the way things are.  I have also been working on a petition along with a fellow parent and we have had a lot of success so far.  In a matter of weeks we received 1000 signatures and those signature represented 26 states and 1 in Canada (you know who you are:) )...we are working on an online petition so that it will be easier for us to get our petition out there to magazines, newspapers, etc and to hopefully continue to get a lot of support for our small group of children who face these rare pediatric cancers.  As soon as the online petition is ready, I will also be posting it on our website.  (NOTE: If you already emailed me your info, please do not sign the electronic petition as well).

My sister Heather and I are steadfastly making plans for this years walk -- I can promise it is going to be the biggest walk yet.  We are doing a 5K this year and will have official bibs and chips to boot!  All money raised will go to The Truth 365 (www.thetruth365.org) and the theme this year will be "Kids Can Do Amazing Things".  While we normally have the walk in October which is the month of Alex's original diagnosis, we are moving it to September in honor of "Pediatric Cancer Awareness Month".  We will have more guest speakers and more entertainment so please save the date and stay tuned for more info on registration, etc!!  

                                                                                        5th Annual Alex's Walk Toward Wellness
                                                                                                    Saturday, September 28th 2013
                                                                                            Battlefield High School (Haymarket, VA)


Will update the site in a few weeks after the results of these scans.  I ask for your prayers and thank you for all the support.

With Love, Hope, and Faith Always,
The Green Family

Saturday, May 25, 2013:  Well 6 weeks went by faster than we expected and while the time was nice and was spent having lots of fun and keeping busy, that feeling that things were "normal" was abruptly stripped from us again this week.  Alex had his scans Monday and we learned on Thursday that the spots in his lungs are both still there and while they are small have doubled in size.  This means that the cells are active and are growing fairly quickly.  SO once again we will start chemo and treatment.  Alex will start a clinical trial next week we believe...we have to meet with the Doctors, sign the consents and paperwork and get the "gameplan".  Derek and I are hurt, angry, frustrated, scared, and just overall broken inside.  I wish I could sugarcoat this and try to be positive, but I just can't at the moment.  We were so hopeful that our prayers were answered with the mixed biopsy results...we thought perhaps we were given a miracle and the spots had disappeared.  Maybe we were just being delusional to think that the spots were going to be gone...why does Alex have to go through this?  The most frustrating and upsetting questions are the ones we won't be able to get answers for...my mind has been racing over the last few days and I literally feel like I am going to explode.  Alex was upset but we are focusing on the fact that he will not have to have a port with this treatment and that the chemo drugs he will be taking are oral.  We will try to be positive but its just SO HARD!!!!  We are scared to death of losing our son...how can this be happening???  How would we ever possibly move on???  I am in NO WAY giving up...just venting and getting out some of the pain that we are feeling. 

The positives are that the spots are small, the regrowth is only in his lungs and is not all over his body or anything like that so we are dealing with a fairly small area.  Another positive is that the chemo is pill form which is HUGE for Alex.  He already takes so many medications what are a few more (sarcasm obviously)...but really the fact that the chemo is a pill is a great positive for Alex.  Another positive is that this last scan more clearly revealed the aorta section and confirmed there was no regrowth there which is great.  All in all, we are dealing with two little spots and while we don't know exactly how this chemo will work we have to try to be hopeful.  Another positive is that the side effects of these two drugs are not as bad as the chemotherapy that he's had before...while he will most likely lose his hair again, the harsh impact to his counts shouldn't be a factor. 

Alex is a fighter, he is strong and our family is strong...we will do everything we can to continue to fight for our son.  Alex is 9 years old...he deserves to live a full life...he deserves to grow up and be a  WWE superstar or famous ice hockey player...he has so much compassion and he loves his family so much...I just could never have imagined this would be happening to us.  I think back to all of the things I did when I was younger, to all of the life experiences I had growing up and cannot imagine my son not having those...I have this urge to try to fit them all in in a matter of months.  I know I am rambling but I don't know what else to do.  I am exhausted and tired of trying to be positive and hopeful...I am ANGRY and incredibly hurt. 

I will update once we know exactly what the plan will be...we believe he will start chemo next week but it depends on how quickly we get in to see the Doctor.  Once we start he will take 2 chemo drugs (Soferanib and Irinotecan) every day for 3 weeks.  He will have blood draws twice a week so we will again be trekking back and forth to DC and Fairfax.  We will do two cycles which are 3 weeks each and then scan at 6 weeks.  Again this is just an overview of what we think we will be doing...will update once we have more info.

With Love, Hope, and Faith Always (even when its hard),
The Green Family

Tuesday, April 16, 2013:  While we got a call from our Oncologist Friday evening, we wanted to wait until we met with Dr. Dome and discussed with him the results of Alex's biopsy because it wasn't a clear cut answer as we were kind of expecting.  So basically, we are hopeful and thankful that the wedge that the surgeon removed and that was biopsied did not show any new or "immature" Wilms cancer cells.  What they did find were sporadic tiny "mature" Wilms tumor cells which we had known he had from his first remission.  Immature cancer cells are those that grow quickly and spread, mature cancer cells are those that potentially never grow or spread but if they do most likely they grow over the course of many years.  That's the good news.  The news that leaves us kind of in this unsure state is that when the surgeon went in to biopsy the nodule in Alex's lung, he had a difficult time seeing any abnormal tissue.  Based on the CT and where the nodule was supposed to be, he took a sample or wedge of Alex's lung out.  We are not sure at this point if he got the nodule we were looking for or if perhaps possibly it was missed.  Don't get me wrong, we are VERY happy that Alex's lungs look healthy and that these new spots are very small, we are also VERY happy with the results of the biopsy so far NOT showing new tumor...it seems as though our prayers once again have been answered and we will not have to jump into the world of clinical trials right away.  The plan as we stand now is to wait 6 weeks and then scan again.  We cannot scan right away because it is too soon after the biopsy and there would most likely be scar tissue or other stuff mudding up the picture as his lungs are still healing from the procedure itself. 

The plan going forward is like I said, we will wait 6 weeks to re-scan his lungs and abdomen via CTscan and ultrasound.  We do have a few other things to do in the meantime unfortunately.  We are going to do an MRI of Alex's head just to rule out anything there.  He has been having headaches lately and has some blurred vision in his left eye...while it could be just vision related...we are going to do the MRI just to be certain.  Also, we are meeting with the Urologist on Wednesday for a few reasons:  1. to check Alex's bladder spasticity (basically to see if his bladder has continued to shrink or if it can retain the same amount of fluid from the last check), and 2. to ultrasound to see if Alex still has bladder stones of concern.  We may have to do a procedure for his bladder (uggghhhh!) but we need to take care of this sooner rather than later of course.

So for now, we have 6 more weeks to spend with our boys as a family without chemo and excessive Dr. appts.  We are VERY thankful for that.  If I have learned anything and I may sound repetitive, it is that we really have to be thankful for EVERY moment we are given.  Right now, knowing the prognosis if Alex does relapse again, we will take anything...if for now it's 6 weeks...we will take that.  If in 6 weeks we find out that the nodules are indeed gone...we will take that graciously.  This whole experience is nothing less than exhausting but we wake up every day and go on with the day.  We laugh, we cry, we hug each other tighter...we are scared but we will never give up hope.  I feel like we are used to the numbness and the medical lingo, etc...I know way too much about cancer, its treatments, the misconceptions, etc.  No parent should have to go through this...and yet there are parents all over the world suffering silently as they watch their children go through horrible treatments just to survive, parents sitting close by every minute holding their babies hands while they watch them fight for their lives. 

There is a new organization, its called Truth365.org.  This organization does a really great job of bringing the misconceptions about Pediatric Cancer and its funding (or lack thereof) to light.  I urge everyone to visit their website, watch the hour long movie they put out months ago, and to get involved somehow.  When we learned of Alex's cancer 3 1/2 years ago, we were told that Wilms Tumor is one of the better cancers to have, if you were going to have cancer at all.  While it is rare, the 5-year survival is in the 95% percentile (a little less for Stage IV).  What we didn't know, is that the 95% percentile "success rate" counts all of the children who live just 5 years and 1 day past diagnosis and then pass away from relapse/complications.  It includes all of the children living with disabilities or with severe after effects from the treatment itself.  I don't classify that as a success, would you?  I, like so many people, thought for a good year and a half that 95% was good, that we were "lucky" to have Wilms and not something else, but to think that  our Alex is currently counted amongst the 95% while facing possibly another relapse and potentially ongoing treatments, with his paralysis and constant pain, with his difficulty to now focus in school due to the chemo and medications, it makes me so incredibly sad.  In this day and age while we have cures for so many diseases, we are considering that our children living with cancer and are able to live 5 years past diagnosis as a "success", I don't understand it.  That is what is not fair.  Everyone watches the St. Jude's commercials and gets emotional, but what are we doing about it?  The funding for ALL of Pediatric Cancers  put together is so much less than that of individual adult cancers.  Pediatric Cancer funding is lumped into one group yet there are hundreds of various types of Pediatric Cancers and the years off of their lives that our children lose is too many.  I have added the link to Truth365.orgs website on our donation page, I believe that this organization will be the Susan G. Komen for Pediatric Cancer and I hope that if you have a few minutes, you will check it out.  Around minute 7 and throughout the video thereafter, you will see Trevor Blake from Trevors Treasures whom we donate the toys collected during our toy drive at our annual walks (Alex's Walk Toward Wellness). 

On another note, I have to share something wonderful that happened this past Sunday.  We went to church and the boys  went to kids church...it had been a few weeks since we had been with everything that has been going on.  After the service we went to pick up the boys and were greeted by the Elementary Director who had a gift bag in her hand.  She told Derek and I how they have been praying for Alex and want to help in any way and decided to have the kids in all the classes make cards for Alex.  What they didn't know was the week prior, when Alex was in the hospital, it was a REALLY rough week emotionally for him.  He is so tired with the hospital visits, the surgeries, the sleepy medicine, etc. and we could see it was really taxing on him.  Alex started vocalizing his thoughts, "I think God hates me", "God wants me to be in the hospital", "God doesnt answer my prayers", "You say He talks to us but I never hear Him".  It was very difficult and I tried with all my power to reassure Alex and to tell him we have to believe and have faith and be patient, but how do I get a 9 year old to do that when its hard enough sometimes for me to as an adult?  It broke our heart to see Alex's spirit breaking down, Derek suggested we reach out to our Pastor to see if he could sit down with Alex and help somehow.  My procrastination got the best of me and that week while I meant to email our Pastor, I never did.  As a family we said our prayers each night and I even bought the boys a childrens devotional book for us to read each day that I thought might help.  But on Sunday, when we got home from church and we started going through all of the cards (there were hundreds), I was brought to tears because it was so overwhelming in the way our prayers were answered.  Alex read through each card and most said, "God loves you", "We are praying for you Alex", "Have Faith, Jesus Loves You"...we didn't our church for this...I stopped Alex as he was reading the cards and said, "Buddy, do you see these cards?  God doesn't talk to us like Mommy talks or Jacob talks, but he puts things in peoples hearts to talk to us for him.  God put it in your teachers heart to make these cards and put it in the childrens hearts to tell you what He wants you to know."  It was an overwhelming moment that made me feel such joy.  I talked to Alex the next day about it to see if he understood what I meant and he said he did.  He cried and he said it makes him feel sad.  I told him its ok to be sad but we should also be so happy to know that God is REAL, and that He loves us.  And while we will never understand on this Earth why some people have to go through such trials and suffering, to know that there is a Heaven and a God who loves us is amazing.  All we have to do is seek him out...sometimes it takes suffering and pain to do that but once you have that moment, where you really truly believe, it changes your life forever.  I always liked the song Amazing Grace, but now when I hear it, I truly LOVE it.  Because in the words when they sing

                                                                                            "Twas Grace that taught my heart to fear
                                                                                                    And Grace my fears relieved
                                                                                                how precious did that Grace appear
                                                                                                        the hour I first believed."

                                                                                                      http://youtu.be/K-mNT0axB9U

The timing of those cards was perfect.  God works in mysterious ways, but once again he answered our prayers and Alex's faith I feel has been restored.  While I don't understand completely why Alex has had to go through so much...and while it kills us watching him endure this torture of treatment...I have to believe that it is in God's hands and that one day we will have our answers.  For now, we wait patiently and do everything we can to help Alex and Jacob for that matter, we learn as much as we can about the disease, we fight for our children as much as we can, and we pray constantly for no more suffering, for a miracle, for Alex to be able to enjoy life.

Thank you all for your continuous prayers, we truly are so thankful for each and every one.  Alex is a fighter and we will continue to press on.  We will enjoy the next 6 weeks to the fullest and will continue to cherish each and every moment we are given.

With Love, Hope, and Faith Always,
The Green Family


Wednesday, April 11, 2013:  We currently are still awaiting the results of the biopsy/surgery that Alex had last week.  Last week was a very long week for us.  Alex had his biopsy on Tuesday morning at Children's in DC.  All went well, the surgeon was able to remove the larger of the 2 spots however as suspected the smaller spot was in a difficult to see/get to place.  Post procedure Alex had some ice chips and water and seemed to be doing ok.  That afternoon however he started throwing up and continued to throw up every few hours for 3-4 days.  I thought perhaps he had the flu as it has been going around.  After several x-rays over the course of the 3-4 days, the surgeon and team determined that coincidentally he had an intestinal blockage from scar tissue from past surgeries that had grown around his small intestine and which was completely blocking anything from going down.  Friday afternoon the surgeon came to our room and decided it would be necessary for Alex to have another surgery to remove the blockage.  Alex, needless to say, was extremely upset.  Derek and I were extremely upset and worried...but trust the surgeon and knew that this was necessary to hopefully get Alex feeling better.  Within 20 minutes of the surgeon coming and talking to us in the room, Alex was on his way down for the operation.  Thankfully, the blockage was exactly what they thought, scar tissue, and it was easy to remove.  Alex awoke and while he wasn't allowed to eat/drink anything, he did seem to be feeling better after awhile.  Finally, on Sunday he was allowed ice chips and by Sunday afternoon he was allowed jello.  Alex had lost quite a bit of weight since he hadn't had anything to eat since the Monday before.  He wasn't smiling or talking much and it just seems as though all of these procedures and hospital stays are really getting to him.  Monday, April 8th was Alex's 9th Birthday and probably the best present he got was being able to go home on this day.  Monday morning Alex woke up and just could not stop smiling...it was so nice to see!  We left the hospital early afternoon and while he was still sore from the various procedures, we had a nice birthday dinner with a little ice cream cake to celebrate:)  Alex went back to school on Wednesday and was REALLY excited to go and see his friends.  While the extra procedure seemed upsetting, I can't help but think of how lucky we actually were to have had that blockage happen while we were already in the hospital.  If we were home, I am certain we would have just thought he had the flu and probably would not have taken him to the doctor until a day or two of him throwing up.  It might have taken longer for them to find anything and things could have been worse than they were.  Things to happen for a reason and while we don't always understand what the reasoning could possibly be and as hard as it is at times, we really do have to have faith and trust in God.  Once we have the biopsy results I will update...we are hopeful and praying that Alex's spots will be the 25% that is NOT recurrent Wilms Tumor...
With Hope, Faith, and Love Always,
The Green Family

Sunday, March 31, 2013:  For about 2 weeks now I have thinking about what to post on Alex's website.  Where to start, what to say, and each time feeling like I cant do it...after just 6 months of remission, our sweet Alex's scans showed signs of possible tumor return.  We were devasted hearing this news and took a few days off from everything.  We spent a few days crying, hugging each other, praying, and wondering why all over again.  We have had ups and downs over the last few weeks, nothing that we arent used to I guess by now.  Alex is angry, scared, and upset, with every right...I can honestly say that we all feel this isnt fair, but we can't dwell on that feeling.  After a few days Derek and I decided together that we had to have hope, faith, and strength for our family.  We have to make the most of every moment because at anytime regardless of whether its cancer, an accident, or old age, our time on this earth is short. 

I am having a hard time getting my thoughts together, I have so much to say but its 1 AM and we have doctors appointments in the morning so for now I will cut to the chase.

Alex's last scans showed 2 new spots in his lungs.  The spots are small, but they are definitely there.  Alex is scheduled to have a biopsy Tuesday, April 2nd at Childrens in DC.  They are able to remove 1 spot completely but the other smaller spot they believe is going to be hard to see and is in a tricky spot to get.  The surgeon is going to try to get it but won't know until he gets in there to see.  IF these spots are Wilms Tumor, which is what our oncologist believes, the prognosis is not good.  There is no curative treatment that they have at this point.  We would enter the realm of clinical trials.
We are praying that these spots are NOT wilms, maybe they will just miraculously go away or maybe they are something else...we will take anything other than another relapse.  Alex hasnt been feeling well lately at all.  He isnt eating much, he says he feels confused sometimes, and he seems more distant than he's been.  I feel helpless and heartbroken, I feel like my heart is screaming inside...

Please pray for our baby...he is scared...we all are...

With Hope, Faith and Love Always,
The Green Family

Monday, November 12, 2012:  Big NEWS today...this morning at approx. 0900 AM EST, Alex had surgery to remove his mediport!!!  NO MORE PORT - NO MORE CHEMO!!!  While he was anxious and very nervous and had (as always) many questions for the surgeon, anethesiologist, nurses, etc...he did awesome and was full of smiles when he was done.  For the first time after a surgery, he was already awake when Derek and I got back to the room, he was sitting up with a red popsicle in 1 hand and a cup of water in the other, and with glassy eyes he said "Am I done?" and followed immediately with "Can I go home?"  See a few pictures that we took right after his surgery this morning, thumbs up all around:)

                                                View 2012-11-12_10-09-13_665.jpg in slide show               View 2012-11-12_10-09-26_595.jpg in slide show

We celebrated tonight with cupcakes and Alex is VERY relieved to have the dreadful port out.  We can all breathe a little easier as we start this next phase of focusing now on rehab solely and trying to regroup and move forward again with our lives.

This update is brief, I know...will update again soon.  Alex will be heading to Shriners in Chicago we believe December 3rd or so.  He has made great progress and his determination is proving to be unfailing!  He is so amazing and continues to inspire and awe us everyday.  He has progressed most recently to using a walker when he's at home.  We are still waiting for movement in his feet and toes, but his feeling is improving slowly and gives us hope that he is still healing. 

Thank you to everyone for all of the unconditional love and support our family has received.  Thank you to Alex's Aunt Heather for putting on this year's walk and to everyone who came out to walk with us.  We have posted pictures from the event to the events / fundraisers page so check it out:).  The money this year that was raised went to Alex to support his continued rehab, current and future medical costs.  We also received a whole box of toys that will be donated to Trevors Treasures. 

Thank you for all of the love and prayers that has been sent over the last few years and more recently the last 9 months as we have endured more than we ever thought we could.  We are so thankful and grateful to our loving family, wonderful friends, for the compassion of complete strangers, and to God for blessing us with our beautiful boys.

With Love and Faith Always,
The Green Family

Sunday, October 8, 2012:  So much has happened since our last update, where should I begin?  With the end of chemo just before school started there was a lot of anxiousness amongst the Green family.  I should start though by saying that Alex had his PETscan a week and a half ago and we found out that he is again in remission!  The PETscan showed "No Evidence of Disease" which is exactly what we were hoping for.  Alex is free of cancer and we will pray everyday for the rest of our lives that things stay that way from here on out!  Alex was super excited...he knew what the scans were going to tell us and he was very nervous about the thought of having to do more chemo.  The last 8 months have definitely taken its toll on us and I think we had pretty much met our max of what we could tolerate.  The feeling of Alex being in remission again is hard to describe.  Most would think that we would have to be ecstatic and on cloud 9, which is how we felt the first time around, but this time is definitely different.  While we are happy about the good news, there wasnt that huge sense of relief or joy that we felt the first time.  Maybe because we have already experienced the feeling and the reality of a relapse.  Maybe its because there is a daily reminder of what the cancer did to Alex this time around with the wheelchair, the walkers, the frustrations that he faces everyday since he "is the only one in his family who can't walk" and that "everywhere he goes people can walk but he cant".  So much has been taken away from our family with Alex's battle with cancer, so much has been taken away from their childhood.  I try not to focus on that though, in order to get by we must focus on the positives, and there are definitely positives to focus on.

Alex started school on time and was super excited about getting back to friends, recess, PE, and some normalcy!  While he missed several days in the beginning due to appts, kidney infection, etc...he is getting into a routine and we are working hard to get him caught up.  He is at a little bit of a disadvantage I think since he missed the 2nd part of 2nd grade last year and because the jump from 2nd to 3rd grade seems pretty tough, we are working through it.  Plus he's a pretty smart cookie so I know he'll get the hang of things and catch on in no time:)  On another note, his little brother Jacob also started school this year (Kindergarten) and the boys LOVE LOVE LOVE going to school together.  Socially the kids have been AMAZING to Alex.  I was so worried and anxious about how Alex would get around, how the kids would treat him since he didnt have hair and was in a wheelchair now, and how Alex would handle going back to school and it being different; but I was SO relieved and overjoyed when Alex came home the first day and after saying he had a great day that his only complaint was that "ALL the kids wanted to push him in his chair and carry his lunchbox for him."  I even got an amazing email from his 2nd grade teacher one day (about the 3rd week of school) saying that she looked out her window and saw the 3rd graders at recess.  The 3rd grade boys were playing football and Alex was the Quarterback!  We are so blessed that the boys have an amazing school where the staff truely care about the kids and their families.  We have done alot to keep Alex at Gravely Elementary over the past few years and things like the above examples only reassure us that we are making the best decision in that aspect.

Alex is still playing sled hockey and LOVES it!  They have had only a few practices so far but get started in their games next weekend.  We are also looking into getting him into an adaptive snowboarding/ski program over the winter since he enjoyed snowboarding so much last winter.   Jacob is playing flag football and loves it. Alex gets such a kick watching all the little 5 year olds run around and try to run plays.  Whenever Jacob does something good, Alex will say, "I taught him that!"  Brothers....

September was Pediatric Cancer awareness month and a few of the non-profit orgs sponsored fun events for the kids.  The weekend that we found out Alex was "cancer-free" we went to Cox's Farms with DC Candlelighters and had an awesome day going through the corn maze, going down slides, and eating a picnic lunch while listening to a blue-grass band, it was a gorgeous day!  The next day we were lucky enough to get to go to Kings Dominion Amusement Park thanks to Growing Hope org.  Alex went on 16 roller coasters and Jacob had fun going on the not-so-scary rides.  It was a great weekend and a great way to celebrate the end of chemo!

Alex will do radiation treatment starting Oct. 15th.  We did a trial run at Fairfax hospital last week and he did great.  He will do his radiation this time around without having to be put to sleep for it which is great so that he wont have to miss any school!  It will be everyday M-F for 3 weeks, the treatment only actually lasts about 30 minutes so not too bad.  It shouldnt be as hard on his body this time either since they aren't doing the full flank radiation but rather pinpoint radiation on the spots that they have identified are higher risk.  This will put us at Nov. 2nd when we should be done with everything.  Of course the final thing will be his surgery to remove the port...a few months ago Alex said he wanted to smash the port with a hammer when we are done with treatment...we'll see if he still wants to do that or if he wants to just get it out and be done with it like last time.

Once we are done with radiation and possibly the port removal, Derek and Alex will most likely be heading to Chicago for rehabilitation.  Its tough because there is the issue of school, the holidays, and our family being somewhat seperated for a  period of time (again), but we feel that this is something that Alex needs to do to help his efforts in trying to walk again.  He is so determined and so strong, I dont doubt that he will do it one day, it just makes me so sad to see him even have to be going through this.  As if the cancer wasnt enough, we have this whole other huge beast to deal with.  Nothing in life is easy, as you get older you learn that lesson and more...but in the end, our family is stronger and closer than we were before and we feel like we can get through anything at this point. 

My car broke down yesterday (to the point where it could be the last of the Santa Fe) and in the hour and a 1/2 that I was sitting on the side of the road with the boys waiting for Derek to come rescue us, the boys asked if I was upset.  I told them that I was but that it would be ok and at the end of the day that it was only a car.  We weren't really having a great day since I left my phone at the hockey rink and had to go back for it and then my car broke down and our day was spent dealing with that and we had lots of "to-do's" planned for the afternoon.  But when it came time to say our prayers last night, we still thanked God for the day knowing that there are things that are important in life and things that are not.  I'm sure years ago I would have been mortified about breaking down in the middle of the road and devastated about my car...but I guess now its just one of those things that happens and it really isnt something to worry about.

We are having our annual walk again on Oct. 20th (more info is on our events page).  While we normally donate the money raised to a different charity or non-profit, my sister convinced me to have this year's walk benefit Alex since we are getting ready to go away for awhile for rehabilitation.   We are still doing the toy drive to benefit Trevors Treasures and hope to continue the tradition next year of raising money for a charity organization in our area. 

Please check our website now through November as we may be posting important info on whether we are keeping this site or moving to another...we will post it on the front page for your convenience.

Thank you to everyone for the continued support and prayers for Alex.  It only seems fitting that Steven our cousin made the site originally almost 3 years exactly with the theme, Going the Distance.  Alot has happened in the last 3 years and our lives will never be the same.  With that said, as any parent I think would do, we will go to whatever distance it takes to get our baby better.  Alex is still that sweet, compassionate child that he always was but he is now also very mature for his age as far as what he understands is important in life and how to treat other people.  We are so blessed to have such wonderful boys and wouldnt trade them for the world (most days...lol).

With Hope and Faith Always,
The Green Family

Thursday, August 2, 2012:  We returned home today from Fairfax Childrens Hospital feeling pretty good.  Alex finished his 7th round of chemo and hopefully last ICE treatment and inpatient chemo!  He did great, had some issues with low magnesium but ate lots of cheesesticks and drank lots of milk which helped it get back to normal.  Other than the low magnesium he didnt have any issues with low blood pressure as he had the last few times of ICE treatment so he was able to get all of the chemo without interruptions.  We made the stay fun by bringing packages that were very thoughtfully put together by friends of ours to the other kids in the hospital.  While Alex was a little dissappointed that he couldnt be the one to actually deliver the gifts (Hipa laws or something) he was still happy to know the other kids were getting some good stuff.  We also passed the time by setting up Circus like games in his room.  His favorite was trying to beam mom with a little ball while all I was given was a small shield...he got really good at looking at one place but aiming for another!  We also got creative with the nursing supplies, turning nurses gloves into water guns by filling them with water, tying a knot so it was sealed, and then poking a tiny hole in one of the fingers so that when the glove was squeezed water shot out of it.  We aimed for nearby cups although somehow with all the laughing we made quite a mess on the floor - I am sure Alex wouldnt have minded if we got kicked out:).

He will have 2 1/2 weeks break now to recover from this treatment. We expect his counts to drop pretty much close to zero as they have been in the past but we dont expect that to slow him down.  We are hopeful for no nosebleeds and little to no transfusions if possible!

Alex has been working hard still in rehab doing modified squats, stretching, and practicing walking.  We have a few walkers at home now and while he cant support his weight hardly at all yet, he is trying to use the walkers more and more.  His left leg which has been pretty weak is slowly getting stronger.  We have been busy contacting various rehab hospitals in anticipation for finishing chemo and going back to another inpatient rehab somewhere.  We are hopeful that if we find the right fit for him, someplace that will motivate him and take advantage of his determination to push him to his full potential, someplace that has the staff to give him the attention and help that he needs, he will have the best opportunity to heal and get stronger.

In the meantime, we have been having some fun too!  Alex has enjoyed swimming in his grandparents pool when he isnt in treatment.  It is great rehab and lots of fun so it works for everyone!  He also has joined a sled hockey team, the DC Sled Sharks.  They practice at the Capitals Practice Rink so he is totally into it, the ice says Capitals all over and the locker room that the boys use has a big number 8 on it for Ovechkin.  The first practice we took him to you could tell he didnt want to get off the ice when it was over.  This past weekend they had a scrimmage against the Wounded Warriors team which was pretty awesome!  The guys were great with the boys and even though you could tell they were much more muscular and faster than our boys, they took it a little easy on us...both teams had lots of fun and it was so amazing to watch. 

The next round of chemo will hopefully be Alex's last round of chemo FOREVER!  He will have 1 last round of Topotecan where he has the daily chemo for 2 weeks.  We are blessed that this chemo regimen is working and that he has done as amazing as he has!  Like someone else I know, I think Alex has Superman powers:)  He got through his treatment like a champ, and when he was dealt an even crappier hand, we fought harder.  Regardless of how amazing he is doing, I cant dismiss that there is still a huge fear in me from the enormity of cancer.  The diagnosis has changed our lives forever and just when we were trying to get our lives back Alex was hit again.  I pray that this treatment knocks out every potentially bad cell that might be left.

We are still possibly going to be doing radiation once we finish chemo.  The radiation treatment would be similar to last time, daily radiation for about 3 weeks.  They wont be doing the full flank treatment which covers his whole abdomen (minus his kidney), but this time they would just do radiation to one precise spot such as on his aorta to try to ensure any cells possibly in that area are killed. 

We are all anxious to be done with chemo...although with everything else we have been focusing on, the treatments themselves have seemed to go by pretty quick I guess.  When you are looking down the barrell of treatment, especially when the first one was so tough for him with the sickness and the blood transfusions, finishing seemed forever away.  But now that we are down to 1 chemo treatment left, it seems unreal.  The anxiety of these last scans is relentless and we can feel the pressure as we get closer to finding out how things look.  Derek reminds me to not look too far ahead, and that really is key to getting through cancer treatments.  You have to focus on today and make the best with any situation you have.  So for today, we find joy in the little things, coming home from the hospital, having carnival games at the house with the family, and watching the boys play hockey and x-games in the garage. 
Please continue to pray for Alex as we near the end of treatment.  We have about 2 1/2 weeks break and then 2 weeks of Topotecan.  After that we should finish around Sept. 1 and have scans shortly after.  We pray for no evidence of his cancer, we pray for complete healing for him, and for God to wrap his arms around our family and bless us with his grace. 
Thank you again for your support and prayers.

With Love, Faith, and Hope Always,
The Green Family

Monday, June 25, 2012:  Alex continues to do well.  He had his surgery back on May 30th to remove his spleen and it took quite a while to get the results back from the biopsy.  We just learned late last week that the mass in his spleen was benign.  It turned out to be an extremely rare mass (there are only 7 reported cases ever of this) called myoid angioendothelioma.  It has been in a few of the reported cases linked with Wilms or some of the syndromes also associated with Wilms but they do not have enough information at this time to know what causes it or much about it.  What they do know though is that of the 7 reported cases, all patients are doing well and after having a splenectomy done, havent needed any further treatment for this.  Our nurse practitioner reassured us by saying, "Benign is always good news, even if it is rare!"  So, with that said, Alex's splenectomy went well, they were able to do the surgery laproscopically and while the surgery did take a few hours (longer than predicted), Alex was great and only in the hospital for a few days.

He had his 5th round of chemo following the surgery (the week of June 11) and was inpatient for the 3 days of ICE treatment (Ifosfamide, Carboplatin, and Etoposide).  Overrall Alex did well although he did experience low blood pressure during each day of the infusion so they had to keep stopping the chemo to give him more fluids.  He did great however and felt pretty good, although he seemed to stay more in bed this time around, not really from not feeling well, we think it was just more because he was upset about having to be back at the hopsital...again.

This week is his second week of break and he seems to be doing great.  His counts are low but like usual you wouldnt know it.  He has been keeping us busy by wanting to play hockey, baseball, some swimming, and the latest and greatest activity has been wrestling with Daddy and Jacob (inspired by many nights recently of watching WWE and John Cena!).  We have been working at home on rehab although are anxious to get started at his new outpatient center tomorrow.  We have been having him stand more at home, helping him practice walking from his bed to the living room and vice versa, and even having him try to jump a little.  While he hasnt been able to yet support his own body weight, he has been getting some spotty feeling in his toes and some new "itching" and sometimes "burning" sensations.  He hasnt yet been able to move anything below his knees, but we are still remaining hopeful.  There are many cases of people working for months and even years to regain movement or to relearn to walk and we are hopeful that eventually Alex will be one of those success stories.  Regardless of whether he walks again though we are trying to teach him that anything is possible if he puts his mind to it.  We all recognize the fact that it is possible that he won't walk again, but we will deal with that when the time comes and for now its really still too early to tell;  in the meantime we are teaching Alex and Jacob, and really ourselves too, that Alex can do anything he wants to do, there may be some limitations but not many.  He can play sports, he can go on roller coasters, he can swim (without floats btw!), he can do so many things he thought at first he wouldnt be able to.  It seems like for awhile there, Alex would say, "I can't ______" (fill in fun activity there), but Derek and I tried to make it a point to start shooting back pretty quickly with, "Why not?"  And then proceed by explaining how he could and then we find a way to make it happen.  I think for awhile we did this so much that even Jacob picked up on it.  The boys talk often about, "When Alex can walk again" and "Next year, when Alex is walking...".  It has been tough, especially the first week when we were home and it kind of set in how things were going to be in a wheelchair, but we are getting through it day by day.

Next week Alex will have his 6th round of chemo which will leave us with just 2 rounds left.  The next round will be the Topetecan treatment again where he has 10 days of outpatient chemo (with a 2 day break on the weekend).  The next scans will be after Alex finishes his chemo altogether. 

Wish Alex good luck with his rehab, we are going to be working hard on walking, standing, biking, and swimming for the next few months to hopefully get his legs moving again. 

Thank you in advance for your continued support and prayers.

With Hope, Faith, and Love Always,
The Green Family

Wednesday, May 24, 2012:  Finally some good news for the Green Family...Derek got the call from Alex's Oncologist late Monday night about the results of Alex's scans on Monday.  The first good news:

The tumor on Alex's aorta has shrunk down to a point that it is so tiny, they could barely see the traces of it on the scan!  This is great news since the chemo is working as we hoped on the tumor and we are only at the halfway point in his treatment.  The tumor in the spleen has also reduced and while it is still about 7 mm in size, they got the info they were looking for as far as which chemotherapy med would be more effective on the spleen (since they had never seen this occur before with Wilms) and they will remove it via laproscopic surgery next Wednesday, May 30.  After the spleen is removed, we will be hopefully getting every last little possible cancerous cell in Alex's body with the rest of the scheduled treatment!!!!

Second good news which we were NOT expecting:

The CTscan also showed a more clear picture of Alex's hips and what they thought in the Xray was heterotopic oxification or bone growth.  The CT showed that Alex does NOT have this condition in his hips but rather he does have calcium buildup in his bladder which is still of concern but not of as much concern for his rehabilitation and takes away that huge obstacle for his recovery in possibly walking down the road.

I keep saying how we are "guardedly excited" if that makes sense.  The ups and downs of treatment and cancer are so exhausting and relentless, when you get good news, it is great but it also is hard to believe sometimes.  Maybe its because there are always unexpected things that come up during treatment, unexpected issues, unexpectd complications, all of these that somehow become expected.  You never know how treatment will go...although we are always hoping for the best, praying for good news, better health, everything is so uncertain.  As a parent, we are tested to the max for what we can handle and how much we can take.  Monday was a very difficult day personally for me...I dont know if it was because I knew how significant the results of these halfway scans would be in my own mind, or if it was because it was just a rainy dreary day, I was at the point mentally that I just couldnt take anymore.  Alex has been through so much, Derek and I have watched him have to battle not only his cancer but also the paralysis, we have stood by his side since February at various hospitals as numerous specialists want to hear his story and give their input.  We have had to make several huge choices on Alex's behalf and each time we weigh all options and try to determine what is best for Alex.  Our family has been seperated since February and with the exception of occasional sleepovers, we see each other in passing as we swap who stays with Alex and who stays with Jacob.  Watching how the brothers have been affected has also been very difficult, even at their young age, it is amazing and sad of what they know and understand.  All of these things we have been going through while trying to put on a happy face and stay positive and strong for our boys, is nothing short of exhausting.  With that said, it has been my faith that has helped me be as strong as I have been.  Many times in this experience I know that I could not done some of the things I have had to do without help.  Monday I think I was at a breaking point...and finally...we got some good news.  I feel like we can maybe breathe a little easier as we move in the right direction as far as the chemo treatment goes.  There is still a ways to go, we have the 2nd half of the treatment to go and possibly radiation, and then after all this we will be left with the battle of trying to rehabilitate Alex to get him stronger with the goal of walking again.  The chemo will be tough as it has been but we know it is working and that gives us great encouragement and more energy I think:).

Good news number 3:

We have made the decision collectively between the doctors and us that Alex is ready to FINALLY, after almost 4 months in the hospital, to COME HOME!!!!!  While we still have months and possibly longer of rehab to help Alex, it has been decided that he needs to come home and start an outpatient rehab program.  He has met the goals as far as learning how to use his wheelchair, transferring between his chair and bed, etc, and he can get around more independently just in this new way.  Mentally, he is ready to leave the hospital and we feel he needs this break.  We will continue rehab on an outpatient basis and down the road after chemo will look at an inpatient program that will be more intense that he may benefit from then.  For now though, he is coming home and is VERY excited about it to say the least.  He will come home this Saturday after finishing the week of therapy.  While he will be going back to DC next week for the surgery, he is aware that we aren't done and there is more hospital visits to endure, however, he is SUPER excited to be leaving this weekend...we ALL are:)

I have to get going but I want to thank you all for your support and for your prayers for Alex.  We pray that the chemo will get every little last cell so that we can get rid of his cancer for good this time.  We pray for continous healing for Alex and for God's help and strength as we start this second half of treatment.

With Hope, Faith, and Love Always,
The Green Family

Tuesday, May 15, 2012: Alex continues to push on every day in his rehab therapy and with the chemo treatments.  He just finished last week his 4th round of chemo which he has done pretty well with.  Again the chemo has been tough on his counts and he had a few minor nosebleeds last weekend but nothing compared to the last time he finished this treatment.  He had a platelet and red blood transfusion Friday to try to help bring up his counts, and he got more platelets on Saturday since they were still pretty low.  Sunday morning however his platelets were just above the minimum for transfusing so he was still able to come home on Sunday with another day pass.  He spent the day playing with his cousins which was great.  We had a nice Mother's Day cookout, it truly was a beautiful day. 

This week he has a break from the chemo and we will wait for his counts to recover.  Today he is having another platelet and red blood transfusion as they have dropped pretty low again.  I think its kind of funny, the nursing supervisor has said that he will have no energy and they would like to transfuse hiim as soon as possible therefore he will miss some therapy today...I totally understand the concern for being extra careful to avoid injury and any bleeding since he is at risk for not being able to stop bleeding...but the "no energy" thing is funny because as she was telling me this in the hallway, Alex was playing hockey in his room.  The boy is constantly on the go, he really has been wearing Derek and I out, but thats ok:).  Yesterday was the first day that he was pretty tired after he finished his therapies so we layed in bed and watched, "Hop".  He fell asleep pretty quickly and took a good nap.  He pretty much wanted to lay around the rest of the night which I think was good for him.  Today however he is back up and ready to go, as always. 

We are still kind of the same as far as movement or improvement in his legs.  He has been having some itching and occasional burning sensations which hopefully indicates change.  We had a little setback last week which left us pretty discouraged but are coming to terms with the news and are ready once again to press on and tackle just another obstacle.  Last week, after mentioning to one of the doctors again about Alex's left leg being more swollen than the right and that the development in that leg has been significantly less than the progress he has made in his right leg, the Doctor decided we should do an x-ray of his hips.  The x-ray revealed that Alex has what is called heterotopic ossification in his left hip and a slight sign of this in his right hip.  Heterotopic Ossification is basically excess bone growth which can limit rehabilitation and range of motion.  Normally it is treated with surgery or medications, in adults it is treated with a medication that stunts bone growth which isnt ideal for Alex since we want him to continue growing.  Since he is currently undergoing chemotherapy, our options right now are pretty limited.  We are focusing on stretching his hips to try to prevent further bone growth or rather to help form the bones that are growing to not grow in a way that makes it difficult for him to move.  The news was discouraging for so many reasons, but mainly because Alex has really been working SO hard to walk, he wants to walk so bad, and this could potentially make it even harder for him to reach that goal.  Surgery down the road is possible, just one more to add to the tally of surgical procedures he has had, right?  I try not to get into the "Its not fair" mode or "Why Alex" but lately it has been hard.  When we got word of Alex's relapse, we were devastated, however, Derek and I both said that we would get through this again and that we knew there would be ups and down and we felt (a little) more prepared since we thought we had an idea of what was in store.  After Alex's surgery when we found out he couldnt move his legs, again we were devastated, but ultimately decided we would never give up trying and we would do whatever we needed to do to get Alex and our family through this.  We worked hard and Alex worked harder through the pain and the tears to relearn how to stress, function, and get through this day by day.  Alex started seeing progress in his right leg and has now been able to kick his leg forward to the point where he can kick a ball and mimic walking motion.  I cant help but to think that if his left leg were progressing at the rate of the right, than walking wouldnt seem as far away...with that let off my chest a little though we vow to stay positive and not let this slow us down.  We continue to encourage and praise Alex for his hard work and the progress he is making. 

Next week, May 21, Alex will have scans.  We are nervous but also anxious to see the results of the chemo as this will be about our halfway mark for treatment.  Following the scans, Alex will have his surgery to remove his spleen.  We do not have a set date yet but they are aiming for next week or possibly the week after, basically when his counts are at a high enough point for surgery, that's when it will happen.  We met with the surgeon last week and feel confident with the procedure.  They are able to do the surgery laproscopically which means less recovery time for Alex which means the quicker he can get back to both rehab and chemo treatment. 

Please continue to keep Alex in your prayers as we approach these next scans and upcoming surgery.

With Faith, Hope and Love Always,
The Green Family

Tuesday, April 24, 2012:  We have been very busy over the last few weeks.  First of all, Alex turned 8 on April 8th (Easter Sunday).  He was so worried about having a "bad" birthday since he would be in the hospital but after the day was over he said, "This was the best birthday ever, even if it was in the hospital!"  While the party was small with just immediate family here, we decorated the cafeteria at NRH like there was going to be 100 people there:)  We had tons of balloons, banners hung up, and superhero party plates, napkins, cups, etc.  It was a great weekend overrall!  We spent Saturday night together and the boys dyed Easter Eggs from Alex's room and then we woke up Easter Sunday and sure enough, the Easter bunny comes to hospitals too!

Alex has been doing amazing in his rehab at NRH.  His days are pretty busy and he really come out of his shell in that he comes and goes in and out of his room pretty much as he wants, he likes to go to the nurses station to talk with the nurses (he tries to bribe them to let him leave) and he also likes to go to the playroom to play wii.  He has met a few friends here at NRH and recently another little girl who we met at Childrens in DC has also just come to NRH for rehab.  They are the same age and have become pretty good friends.  

Alex has been working really hard, he is so strong and tough and his competitive and determined attitude really are paying off!  He has had some movement in his legs which gets stronger and stronger every day.  He can move his thigh and hamstring muscles and the tendon in his knee which allows him to now do a kicking motion both front and backward!  We were SO excited when this happened, it was gradual at first, it started with us noticing some twitching in his knee while we were doing our nightly stretches with him.  Then he was able to slightly pull his heel back toward his butt and finally he was able to kick his leg forward!  While he hasnt moved anything below his knees yet, we are so encouraged and the therapists are very impressed with the improvement he has been making.  I am a little worried because the leg burning that he was having for awhile has seemed to have gone away - I am hoping that doesnt mean the nerve regeneration is stopping...I pray everynight for movement in his little toes because I feel that will be our sign that full recovery will be possible in his legs.  It has been tough for him but overrall he is doing well.  He has good days where he is feeling great, he is really motivated, and he is ready to work hard, but then he also has not so good days where he is frustrated, discouraged, and just wants to go home.  The not so good days for Alex are especially tough on us...we are trying so hard to help him get better and it just cant seem to happen soon enough.  Its a constant battle for me in trying to have faith and not worry when all I feel like I do is worry...we all wish we could just take this away from him and make it better but time seems to move so slow in our world while the outside world is moving so fast.  Its already almost May, I cannot believe we have been in hospitals since February. 

Alex just finished up his 3rd round of chemo on Friday, April13th.  It was tough as this was the first round of topetecan, the daily chemo regimen for 2 weeks straight.  The first week wasnt so bad, he had some nausia with the chemo but then was fine by the time they returned to NRH.  By the end of the second week though he was starting to get pretty tired and while he pushed through his rehab, you could really tell it was draining him.  He was pale and his counts took a pretty bad beating.  We were supposed to get to have our first "day pass" on Sunday, April 15th so that Alex could go home for the day for the first time since his surgery in February.  Saturday morning however Alex got a nosebleed that was pretty bad.  Since his platelets were so low, they couldnt control the bleeding.  The nosebleed started at 0700 and didnt stop until they were at Childrens and packed it in the ER around 1000.  This unfortunately made Alex miss his "day pass" which he was so upset about.  The following week (last week) the nosebleeds continued although they were just light bleeds.  We were able to control them at NRH each time and he got all in all since that Saturday 6 transfusions of platelets.  The topetecan is known to really take a toll on platelets.  Last Friday he got 1 more transfusion and by the weekend he was feeling pretty good.  Jacob came to the hospital Saturday night and we had a sleepover!  Alex cant stop hugging Jacob when he comes to visit, he really misses his brother which has been tough for him.  We had a great night and then finally, first thing Sunday morning (0800 on the dot which is the earliest time possible) we got Alex in our car and started the trek home to Grandma and PaPa's house (which has become our home now for the time being) for his first official "day pass".  Alex was SO excited.  He looked out the window the whole trip home and asked how much longer probably about 5 times between DC and Warrenton.  He was pointing out all kinds of things that he saw out the window and was just so excited.  We had a great day and while it was overwhelming and tough on him, things are much different being in a wheelchair and he realized he couldnt do alot of the things he used to do the way he used to do them so it was a little upsetting for him.  That said, it was a good day - he ate a ton - and while he was sad to go back he knew that this was a good thing and hopefully something we can start to do more often on the weekends.  We got back into the car and both the boys passed right out!  Alex was so exhausted but it was a much needed and much deserved break!

This week is Alex's 2nd week off the topetecan and his counts are starting to recover.  We will check again on Thursday but it seems as though he should be recovered enough by the end of the week to start his 4th round of chemo (2 weeks of topetecan again) on Monday.  I am  a little nervous about how much this next round is going to affect him having gone through it once and we saw how much it drained him, that said, I dont think it was as bad as the second round of the ICE treatment he had...

The plan is to do the topetecan again for 2 weeks, wait another 2 weeks and then scan to see how the topetecan worked on the remaining tumor.  I believe after the 2 week break and scan, we will then have the surgery to remove Alex's spleen.  This we are told can be done laproscopically and the recovery shouldnt be too long and then we could start chemo again.  They are also talking about wanting to do radiation even though Alex already received radiation, they feel that we should consider doing it again since his tumor has shown to be resistant and he is considered high risk with the relapse.  WE arent sure at what point the radiation will be done, although they are talking about doing that at the very end of his chemo treatment.

We are hoping to get another "day pass" for this upcoming Sunday and are hopeful the weather will be a little better:)  Although last weekend, despite the rainy cold weather, for us it was a beautiful day!!!  I think we could have had a blizzard and Alex would have been smiling ear to ear:)

WE ask for your continued prayers for Alex.  He has an extremely tough battle and while he has been doing amazing and overrall has had a pretty good attitude, it is a long and hard road for him.  He is making great strides in rehab and in his cancer treatment but we still have a ways to go.  I long for the day where Alex will be back in school, playing sports with a head full of hair and a truly genuine innocent smile on his face.  He has had to grow up so quickly and has had to come face to face with things that kids shouldnt even need to know about.  We are super proud of him as always and just want him to get better.  Our prayers were answered when Alex kicked his legs and the PETscan came back with good results, we pray continuously for just a little toe wiggle and for the chemo to kill every last possibly cancerous cell in his body!  Thank you a million times for your help in fighting this battle with us.

With Hope and Faith Always,
The Green Family

Saturday, March 30, 2012:  Happy news today!  Alex's PETscan turned out good...no surprises which is what we were hoping for.  The PETscan did show that the area of Alex's spleen contains something that is actively growing.  We were told that most likely this is tumor, it is possible but very rare to Alex have some sort of infection in his spleen that would make the PETscan illuminate in that area but most likely it is tumor.  What they arent sure of is what type of cancer it is.  While they earlier believed that most likely this would be Wilms tumor, since that is what his recurrence was in his abdomen and what he was treated for originally, there is a small chance that it could be another type of cancer.  This would be rare however we also know that it is rare for Wilms to go to the spleen.  In fact, we have been told that they do not have any other instance of Wilms going to the spleen to refer to...so either way we are kind of dealing with something that is "rare".  (That term by the way has totally lost its meaning to our family!)

The plan currently is to start Alex on his 3rd round of chemo this upcoming Monday.  He will switch from the previous ICE (Ifosfamide, Carboplatin, Etoposide) which he had the last 2 rounds to Topotecan which is an newer chemo drug found to be effective on a few cancers that has shown to also be effective with Wilms.  This round will be a daily 1 hour infusion for 2 weeks (2 days off on the weekend) but one that he can do as outpatient which means he will be able to still do rehab at NRH in the mornings and then go over to Childrens in the afternoons for the chemo.  We will do 2 rounds of this treatment and then scans again to see how this chemo drug affects the spleen.  That said, they are going to do an ultrasound of Alex's spleen early this week to see whether it will be possible to biopsy the spleen.  If the area has a lot of blood movement within it than it is difficult to biopsy, if the area does not show a lot of blood movement, than we should be able to do a biopsy to see what the mass is.  It may be possible at some point that Alex will have his spleen removed, which is what we kind of knew was a possibility when we found out about his relapse. 

The good news that we were not really expecting was that the spleen was the ONLY area of the PETscan that lit up.  This means that the tumor along his aorta is not active and there was no other area found of tumor (bowels, pancreas, etc).  We were really starting to worry since Alex had not ever had a PETscan prior and it seems as though this is the most accurate test they have.  I guess the reason for not doing one sooner is because you are actually injecting radiation into the body which they try to limit.  I have mixed feelings on this because it seems to me that you would want to do the most accurate test 1 time, as opposed to a pretty accurate test every 3 months...that said, we are happy with the results and are focusing on figuring out what is in Alex's spleen. 

Overrall he is feeling really good right now.  His counts are up, he is eating and drinking, and he has been working REALLY hard at rehab.  He did 13 push ups Friday morning and has learned how to transfer by himself from his bed to his wheelchair and vice versa.  He practiced kicking a ball Friday afternoon and while the motion of his legs were solely from his hips and his arms were totally supporting his body, we know he has definitely made progress in rehab despite the interruptions and complication of the chemo. 

He is an amazing boy and doesnt even realize it.  He has struggled with the amount of time we have been in the hospital and has been counting down the days to his birthday coming up...that said we are trying to keep him positive and working hard.  We just found out that as long as his counts are up we can get a "day pass" at NRH to do something outside of the hospital!  Today we walked across the medical complex to Blimpie for lunch.  While it doesnt sound like much probably, to us it was AWESOME:)  It is a beautiful day and we ended up eating our lunch outside in the common area.  The sun and fresh air felt so good, we are planning on doing it again tonight!  Derek and I are planning an outing for him, something close by, for his birthday.  Being in DC there are so many options so it should be a great bday present to get to do something like that!

Thank you all for your prayers and support.  This last PETscan was really nervewrecking for us and we are so thankful that we didnt get any surprises!  It seems like we had so many unexpected obstacles that have hit us right in the beginning of his relapse that hopefully this is a sign of things turning around:)  Please continue to keep Alex in your thoughts as he starts this 3rd round of chemo next week.

With Faith and Hope always,
The Green Family
P.S  I have been taking SOOO many pictures and am working on getting the photo album section updated so that it doesnt take so long to load.  Please check back soon to see recent pictures of our Superman!

Wednesday, March 28, 2012:  Things have been pretty busy lately since our last update.  We were able to get only about 2 full good days of rehab in at NRH before we needed to head over to DC Childrens for the 2nd round of chemo.  The rehab went ok although it was pretty tough at first for Alex, his pain in his legs wasnt quite under control and they quickly wanted to ween him off of the morphine he had been on to get him onto something else.  This combined with more activity had left him pretty sore at first.  That said, he did well and atleast got part of his evaluation out of the way before going to DC Childrens for chemo.  The chemo went well, no issues right away, however they kept Alex there to check his counts on a Monday to ensure that he would be ok to return to NRH that week for rehab.  His counts dropped much quicker this time around and at the same time we had some concerns with his bladder/kidney so it was decided that he should stay at Childrens again until we got everything under control.  Derek and I were happy with this decision as we have been very impressed with the DC Childrens hospital and felt Alex was well looked after there.  We again met a new team of Oncologists, Nephrologists, Urologists, Therapists, Child Life Specialists (Alex's favorite of all the 'ists') and made ourselves at home again. 

This second round of chemo definitely took its toll on Alex.  He was extremely nausious and got sick for a period of a few days where he couldnt keep anything down, including his medicines.  He got pretty pale, his eyes were sunken with dark circles under them, and he just felt horrible.  He couldnt eat, we couldnt even ask him if he wanted to eat without him stopping us midsentence to indicate that he might get sick at the thought of it.  He lost some weight and overrall it was very hard for Derek and I to see him this way.  But as quick as it came that feeling soon passed and pretty soon he was eating some, playing card games, and smiling again.  They had given him some medicine to increase his appetite and I think this was a big part of him starting to feel better.  The next week he started rehab at DC Childrens and by the end of last week he was doing AWESOME!  I think there was a combination of events that happened last week that really got Alex motivated to work hard with the goal of getting home.  One was a really great therapists at Childrens who Alex really liked and I think could have been trying to impress:).  Another was an AWESOME Chick-Filet event last Thursday night that Alex's school and aunt put together, during the event his aunt and our family were texting us pictures of all of his friends, teachers, family, and strangers who all came out to support him and while it did make him a little sad because he wanted to be there too, we both really enjoyed seeing the pictures and each time my phone dinged he wanted to stop what he was doing to see the next picture that was sent.  That event was really special and I cannot describe the amount of love and support we all felt seeing all those who were able to make it.  Alex also received a banner from this event and we were overwhelmed and overjoyed at the number of signature and inspirational messages that were written.  Thank you by the way to everyone who was a part of that, also to the awesome Chick-Filet people and staff who totally were not expecting what apparently turned out to be the most busy "spirit night" they have ever had!   So a combination of these things has had him working harder than ever to get better so that he can get home.

Monday was also a good day despite Alex having to do a number of 'not fun' things in order to get to return to NRH.  At Childrens, an organization called "Hope for Henry" put on a REALLY cool Super Hero party.  In between procedures, Alex spent most of the day there and had tons of fun.  He met Batman, Spiderman, and WonderWoman; he had his face painted for the first time ever and went all out with it; he got lots of goodies and even a Batman cape!  The kids all loved it and for us, its such a relief to get to see your child excited about something and happy again. 

One of the things Alex had this past Monday was a CTscan.  Although it was a little bit earlier than originally planned, the oncology team wanted to go ahead and proceed with the scan to get an idea of how the first 2 rounds of the ICE chemo treatment went.  While we do not currenlty have the Feb. scan here to compare this one to, the thing of concern currently is that the mass in Alex's spleen did not change in size at all.  This could be a good thing, but its concerning in that if the mass is not Wilm's tumor as previously thought, we are back to not knowing what this mass could be.  We know that chemo drugs can potentially cause secondary cancers so this is one possiblity.  We were told Monday evening that it could be possible that the mass is something completely different but were not given any real ideas of what that could be.  Because Alex had never had a PETscan done before and because the area of his recurrence was also around the area of the bowels, pancreas, etc.  Dr. Dome suggested we consider having him do a PETscan.  That brings us to where we are tonight, Alex and Derek are both asleep and tomorrow morning we will get up bright and early and head back to Childrens for a PETscan.  The PETscan will take 3-4 hours and involves a radioactive-glucose injection of some sort which highlights area of rapidly dividing cells (which react to the glucose) therefore illuminating the areas of cancer in Alex's body.  We are hoping and praying with everything we have tonight that the PETscan just shows what we have known we are fighting all along and nothing more.  They will be looking specifically to see if the area of the spleen is illuminated and also if there is anything in the bowels, pancreas, and other organs in that area that sometimes can be difficult to spot with the CT.  Tomorrow is a big day for all of us and one that we are hopeful will turn out to have good results.  We probably will not know anything right away tomorrow but are hoping to know by the end of the weekend as Alex is scheduled to start the 3rd round of chemo early next week. 

We know there are many people who are praying for our son Alex and just want to thank every single person for their prayers.  Derek and I are in a constant battle with ourselves to stay strong and to stay positive and to stay encouraged for Alex, and we really could not do it without the help and support of so many people. 

With Hope and Faith Always,
The Green Family

Wednesday, March 7, 2012:  As I write this update, Alex is sleeping soundly in his new room and new home at NRH  (National Rehabilitation Hospital) in DC.  The day was pretty busy as we spent the morning packing up our room (this was quite a chore btw with all the balloons, stuffed animals, cards, pictures, which so colorfully decorated his room at Fairfax); saying goodbye to all of the nurses, doctors, therapists, and all the faces that had become so familiar to us over the last month; making last trips to the child playrooms (Alex had to get in one last game of Wii of course); then hopping in the ambulance to make the trek downtown.  Once we arrived we were greeted by all new nurses, doctors, therapists, and staff who all have been very nice so far and very welcoming and considerate of Alex.  Alex has been nervous over the past 3 days once we found out we were going to be relocating.  I think his anxieties about the "new home" have settled some as his nurses have been very gentle and friendly, giving him some say in his care and how he likes things to be done.  Once we got settled and took a tour of the facility which seems pretty big, we were able to visit the playroom and Alex got in a game of Wii sports before dinner.  We also played some ping pong for a bit too!  We understand that tomorrow will be a big day and while his physical therapy at Fairfax consisted of 2 times a day for about an hour at a time the focus at this hospital is solely PT so that will be a fairly big adjustment for our baby.  He will start at 0830 and will go through until about 3:30 with a 2 hour break for lunch.  We are expecting the next few days to be pretty tough but with focus and rest at night, we know it is what he needs to continue to get stronger and hopefully make great improvements in his healing!

The effects of the chemo have begun and while Alex left Fairfax with a head full of hair (although some loss had begun on his pillows and sheets, etc) he sleeps now with a mohawk!  He discovered that if he pulled his own hair out he had control over when and how it falls out.  He liked the idea of the mohawk and after about 30 minutes of careful and strategic pulling he ended up with quite a wild 'do.  I have to admit though, while I liked to see him smile and knew that it was good for him to make the decision to take control over something that he wasnt happy about, it was hard for me to watch.  The long thick locks of dirty blonde hair fell to the floor in such a pile that when we returned to his room from the playroom this evening, the nurse had swept it up and put it in a ziplock bag for keepsake purposes.  Alex thought that was pretty cool and has kept it on a special table by his bed that has only his stuff on it (we were told this was his table and not to put anything else on it.  Regardless, our long haired boy now has a mohawk and pretty soon will be bald again.  I told Alex that this is a good sign that the chemo is working and we know that it is inside now and killing all the bad cancer cells.  He knows his hair will grow back and that is comforting to him.

We spent exactly 1 month at Inova Childrens in Fairfax and while it seems to have flown by, I feel like I have aged 10 years.  Derek and I have alternated mostly nights spent at the hospital and then nights at home with Alex's little brother Jacob and really it has been exhausting to say the least.  The night spent in our home doesnt ever really seem to be enough sleep to catch up, and it is hard to be away from the hospital.  We have tried to keep our family together for the most part, we were lucky to be able to have 2 Friday nights at Fairfax where they let the whole family stay which we had a movie night with ice pops and ice cream.  It was good for all of us those 2 nights to get to stay together just the 4 of us again.  Jacob has been awesome and though we know he is having a hard time with being separated from his big brother, everytime he does get to see him he is very gentle and loving.  I had tears in my eyes one night that Jacob was there and Alex was having something done that he was pretty upset about, I looked over and noticed Jacob right at the top of Alex's bed and he had put his little hand through the rail and they were holding hands.  It was the sweetest moment that I will hold in my heart forever.  It is those little moments where you realize brothers will be brothers with the nit-picking and namecalling but ultimately they are best buds and will be there for you when you need them most.
We have heard great things about NRH and look forward with all the hope in the world that Alex will prove to be a great success story here.  We will stay here for as long as he is making progress.  He will get his chemo at Childrens National in DC where Dr. Dome will be his primary oncologist.  This all is such a blessing and really worked out perfectly for us.  We have been told by the Drs at Fairfax that this really is the best place for Alex and that the way things came together to make it happen just seemed perfect.  And even though Dr. Dome was overseeing Alex's treatment at Childrens, it is a blessing to now also get to have him as our primary oncologist since he is one of the few Wilms Specialists in the U.S. 
I am going to sign-off because I am exhausted and we have a big day tomorrow.  OH - before I forget I should pass along some big news.  Alex has another claim to fame:)  Through a friend who knows through a friend of a friend, etc Ben Roethlisberger of the Steelers (Alex's all-time favorite football team), Alex's picture and story was added to Big Ben's officlal fan page just last night.  Visit www.bigben7.com to see our super cute boy on the front page.  Alex was THRILLED to say the least, he told me to call his teacher so that she could tell his classmates the next day:)  He now considers himself a part of the Steelers and I think it was a great moral booster for him as we start this next part of our journey.
Please keep Alex in your prayers, we are hoping for a miraculous recovery here at NRH.
With Faith and Hope Always,
The Green Family 

Wednesday, Feb. 29, 2012:  Things have been going pretty well over the last few days.  Since the last update we have continued with Physical Therapy twice daily and while we havent yet seen movement in Alex's lower extremities, he is doing awesome!  While it is very difficult for him to get motivated to get out of the bed and into his chair (it is painful for him doing this), once he does get into his chair and get to the gym, he really enjoys it; he pushes himself and strives to beat his last performances, as competitive and determined as he always has been! 

We were surprised to learn yesterday that Alex already needed a blood transfusion because his counts have already begun to drop from his first round of chemotherapy treatment.  He started the ICE treatment which stands for 3 seperate chemotherapy drugs that are giving over the course of 3 days.  The treatment is definitely more intense than what Alex went through before but so far he is doing ok.  Today his counts were even lower and he is already considered neutropenic which means we have to be extra careful of germs and visitors.  An ANC of less than 1000 is considered neutropenic and Alex's ANC today was 24.  I thought maybe the Dr. meant 2400 but no, we are at just 24.  That said Alex seems to be feeling ok.  He ate a peanut butter and jelly sandwich for dinner and while that didnt taste so good, apparently the 3 layer chocolate cake that they brought tasted REALLY good:).  Our days are busy with lots of Dr. visits, labs, meds, physical therapy, and in between we try to stay busy with games, cards, playing on the iPod and a little tv (Spongebob, Good Luck Charlie, Looney Tunes, etc). 

We are hoping to get to leave the hospital in about 2 more weeks or maybe the end of next week.  They basically want to watch Alex's counts drop and then recover.  We arent sure because the timing will be interesting, in about 2 weeks Alex will be due for his 2nd round of chemo which would mean we would be back in the hospital so whether we go home before the 2nd round or not is still up in the air.  This is a short update but wanted to keep all up to date on how Alex is doing.  Thank you so much to everyone for the cards, pictures, well wishes, etc - I think Alex has one of the best decorated rooms on the whole 5th floor!

With Hope and Faith Always,
Jenni Green

Saturday, Feb. 18, 2012:  I apologize for the length of time that has gone by since our last update.   A little technical difficulties mixed with tons of visits by Doctors, Neurologists, Orthopedic Surgeon's, Alex's surgeon, Oncologists, Nurses, Rehabilitation Therapists, probably even leaving some out, left me with not much time to be able to troubleshoot and update the site.  Thanks to our tech savvy friend Raishad, we are back up and running:).  Since the last update much has happened but at the same time not much has happened.  The biggest obstacle that we have been focused on has been the circulation issue mentioned in the last update which really is more than a circulation issue.  Since the surgery, Alex has not been able to move his legs.  We have gone through all of the above mentioned Dr's to get as many answers as possible and while there are so many factors limiting Alex's ability to have scans done at this point, the best hypothesis is as follows:

During the surgery Alex lost a lot of blood.  When the surgeon went in to actually start dissecting the tumor from his aorta, the condition of Alex's aorta was "the frailest he has probably ever dealt with".  This is due to the chemo, previous radiation, and tumor pressing on that area.  During the surgery, there were several instances where the aorta started to tear and little holes were present at which the surgeon needed to clamp with his finger the blood vessels that go to his lower extremities to temporarily stop blood flow so that the surgeon and the cardiothorasic surgeon (who was called in for assistance) could stitch up the holes.   They believe it was this intermittant pressing that has damaged the spinal cord area that controls movement in Alex's legs.  Alex has some feeling, he has sensations of pain which is most likely nerve pain, he can feel some touch just below his hip and upper thigh, however, he hasnt been able to feel touch anywhere below that.  While the neurologists have not been too optimistic (we havent seen them too often or for very long lengths of time), the other staff has told us that it is probably still too early to tell what could happen once Alex is able to start more rigorous physical therapy and as his body continues to heal.  From the clamping also and because of the length of surgery and the pressure on Alex's bum, the circulation had stopped going to that area and after surgery it was bright white with a deep purple ring around it.  Once Alex was positioned onto his side, the bright white area filled in with deep purple and has made any chance of further MRI's, Ultrasounds, CTscans, difficult to do right away.  He has had to be positioned on his side and rolled over from side to side every 1 1/2 - 2 hours, this is so that we can make sure he isnt on one side too long to help his bum heal and to help him not be on his one side too long.  Because of this severe bruising, they brought in a special bed for him, had a wound nurse look at his bum and prescribe an ointment (which has apparently been like magic cream!), and has limited him to only his side.  On a positive note, the doctors have been AMAZED at how well this bruising, which they fully expected to break and open up at some point and possibly creating a more severe problem, has actually healed.  Right now, while there are a few small spots of deep purple, I would say 90% of the bruising has healed without opening.  He has been able to roll over more comfortably and just as of a few days ago, was able to sit up in a wheelchair for the first time and go for a ride around the floor.  It was a VERY cool thing, all of the nurses at the nurses station were so excited for him, we even went outside to the kids play area for a few minutes to get a little fresh air.  While he was bummed to come back to the room as he is only allowed 10 minutes at a time 3X a day right now, he was excited that we get to start doing that more often.  Today, we went out and he threw the football with Daddy a few times, and shot a couple hoops:)  He is so sweet and even though he is limited right now, he was acting as a little host by asking his brother Jacob what he wanted to do and was giving him suggestions for things he could play outside.  

We currently are working on getting him to eat as his appetite has not really been there.  He is on IV nutrition right now and they are hoping to take him off of this soon before he starts his chemo.  He is scheduled for an MRI and CT scan on Monday.  The MRI will show the spinal cord and surrounding blood vessels and they expect to see some damage to the cord that didnt show up right away in the first MRI after surgery.  The CT scan is to look at his spleen, remaining kidney, and abdomen to see how he has healed and if he is ready to start chemo, which is why we were here in the first place.  That seems crazy since all of the focus and part of our shock has been on his legs for the last week.  The plan is to start chemo on Tuesday of next week should all else look ready.  After that, we will stay in the hospital for as long as it takes for his blood counts to drop and then come back up to normal.  This most likely will be about 2 more weeks.  They are paying close attention to his remaining kidney and the fluid intake vs output as his remaining kidney has taken quite a toll during this experience.  The nephrologist (kidney specialist) has indicated that his kidney has done amazingly well in making up for the loss of the other one and through everything his lower body has been through.  Apparently when the blood flow was cut off, it not only damaged the spinal cord, but all things below that point (muscles, nerves, bowels, etc) were affected.  The muscles, when cut off from blood supply, immediately start to break down and when they do this they release a chemical or something into the body which is filtered through the kidney.  This causes quite a bit of strain on even 2 normally functioning kidneys, but Alex's 1 kidney has acted like Superman apparently and has been doing an amazing job handling all of the extra work.  This is another reason for the delay on the scans because the scans are to be taken with Contrast which is basically a type of dye that helps illuminate areas that the doctors are focusing on in the scans.  This contrast has also been known to cause 2 normally functioning kidneys problems, Alex's kidney has always handled contrast well, but the Doctors do not want to add any more stress on the remaining kidney if it isnt necessary.

Derek and I (and jacob as well as the rest of our family) have gone through many emotions over the last week 1/2.  At first, I would say we were pretty much in shock.  There was disbelief and pretty much some expectation that Alex would move his legs and that this couldnt be happening.  We then went through feelings of anger.  We were mad at the doctors and were feeling questionable on decisions that were made even though we have felt all along prior to this that we were in the best hands.  We have now come to a point where we still have hope, we are always amazed at Alex's body and how well he heals and why should this be any different, however while we have hope, we also know that no matter what the outcome, we will be ok.  Alex is a trooper, he is a fighter, and while he hates hospitals and all of this, he has amazing moments where he shows his courage, his strength, and totally inspires us everyday.  He has had friends visit and that always cheers him up, I love these moments because you can tell he feels like a kid again.  As always he is a little host and asks his friends if they want ice pops and if so what color, he then orders me and Derek to bring a round of ice pops for everyone.  The other morning, he actually clapped at me to bring him his water, at which I said, "You know that would totally NOT fly at home".  He smiled his cute smile and said, "I know."

Alex continues to heal everyday, we are so proud of our baby and so amazed by him everyday.  Jacob has also been such a great little brother, we actually were able to have a sleepover last night and Alex said that he should win the "Good little brother award" because he did so well.  It was so nice to be able to spend some time just the 4 of us again, it is these little moments for which I am so thankful.

I promise to update the site more often now that we have the tech stuff taken care of:)  We continue to reach out for prayers for Alex as we get through these next few weeks of healing more in hopes of improvement.

Thank you for your patience and for all the well wishes.  We are so thankful to have so many family and friends on our side:)

With Faith and Hope Always,
The  Green Family

Thursday, Feb. 9, 2012:  Today has been a much quieter day which was very much needed since the past few days have been so busy.  After the surgery Alex was recovering pretty quickly.  He surprised the doctors that he didnt get a swollen as they expected, his chest xrays all looked good, his blood tests have been perfect, and overall he was doing pretty well.  Yesterday morning he was going to be one of the first kids to have his breathing tube removed as he was already breathing on his own successfully.  However, all that changed when one of the surgeon's counterparts came by for a routine visit.  Alex has a very large and very purple bruise which covers his bottom beginning from his lower back.  It is extremely painful for him, and this was alarming.  He also, beginning at about 2 am Wednesday morning, indicated that he physically could not move his legs.  While all of the overnight nurses and doctor staff thought this could be normal from the length of surgery that he had and from the loss of circulation perdiodically, there did not seem to be a very alarming concern at the time.  Alex had an MRI scheduled for 3 PM yesterday however once the surgeon saw the bruising and saw that he could not move his legs, she moved the
Tuesday, Feb. 7, 2012:  Well things changed several times over the course of our last update and with everything happening so fast, it was difficult to update the site.  Alex's surgery was originally rescheduled for Thursday, Feb. 9th but we received a call yesterday afternoon saying that his surgery would be pushed up to today.  While it was short notice, we were happy about that as Alex had been starting to experience some chest pains off and on.  Since he had been on amoxicillan since last week, the threat of the strep throat wasnt as significant and the doctors as well as Derek and I felt that we should get everything started sooner rather than later.  So, here we are today, after quite a long day.  Alex's surgery was scheduled for 0800 and we arrived at the hospital early this morning.  He did wonderful with everything and I was really proud of him in how he handled going back to the OR and taking the sleepy medicine.  The anesthesiologists were very cool and let him pick mostly everything, from the smell of the sleepy gas in the mask to which mask he wore and they even let him play a game of sonic briefly to calm his nerves a bit while he sat on the OR bed.  That part went very well.

The surgery was to remove a mass in his abdomen as well as to do exploratory surgery on his spleen.  The surgeon had told us several times that it was hard to pinpoint the length of the surgery and that he was going to spend as long as it took to hopefully get out most if not all of the mass.  They also were going to insert a port so that Alex could begin chemotherapy as soon as he recovered from the surgery. 

The surgery itself took almost 7 hours.  The surgeon sent out an OR nurse every few hours with updates.  When the surgeon came out we learned that Alex did great.  They were able to remove about 90 percent of the mass, the remaining is what is kind of wrapped around his IVC and some blood vessels that were tricky to manuever around.  There was a cardiovascular surgeon who did end up assisting our surgeon at one point and they had to stitch part of his aorta.  Unexpectedly they found a small spot of tumor on I believe one of his bowels and they took a biopsy of it.  They also found another small spot that looked like it was on the inside of one of his intestines, I believe, and they took a small portion of the intestine out.  Alex lost quite a bit of blood and had several blood transfusions in the OR.  Just by feeling his spleen the surgeon said that it was a bit hard indicating that there is something inside of it.  They are not able to biopsy the spleen however it looks like after chemotherapy treatments the team at Childrens feels it would be best to remove it altogether.  We are going to be doing an MRI before the start of chemotherapy to just confirm again that there is something inside of the spleen that isnt going to go away on its own. 

So, with all that said, Alex is in his room in the PICU (Pediatric Intensive Care Unit) but is doing well.  He has been pretty much "sleeping" but seems to try to wake up every 40-45 minutes (pretty much right on cue).  He is on heavy pain medicine as he has breathing tubes, angiotubes, etc.  And they are monitoring him very closely.

They are concerned or atleast watching his circulation very closely.  They had a difficult time finding his pulse in his legs in the recovery room and they were very cold and kind of a pale blueish color.  They did an ultrasound in the recovery room of his aorta and where the aorta splits just at the bladder to go down each leg and they believe, although cant tell for sure, that there could be something partially blocking the blood flow to his legs.  They are happy in that he does have what seems like pretty good circulation in that the color has improved and the warmth is improving slowly.  They were able to get a faint reading of his pulse in his legs after a few hours of being in the PICU.  And, they have done a blood tests which tests the acidity in the blood which somehow would reveal if there were any blockages and that blood test came back perfect so far.  They arent sure if possibly there is a piece of tumor possibly blocking, or if it is his bladder but we are most likely going to do a CT scan in the morning to see if they can find anything.

When Alex was first diagnosed with Wilms back when he was 5, we met with a Cardiologist the very first week because they had found something faint in the echocardiogram of his heart and upon looking at this they discovered his pulse was hard to detect in his legs.  Ultimately they concluded that it wasnt anything serious and that we could look at his heart once the port was removed.  We mentioned all of this to the surgeon today and I believe either he or the Childrens team are going to look into what was noted by the Cardiologist back in 2009 regarding Alex's circulation to see if they find out anything more there.  We dont know that a CT scan will reveal anything and our surgeon thinks that because Alex lost so much blood, this could very well be the reason for the faint pulse and coldness.  Since there is a history of this he expects that his circulation will continue to improve through the course of the night, although they are keeping a very close eye on him here in the PICU.

Through all of this, Alex continues to fight.  I was encouraged tonight because even though he has had so much pain medicine and all kinds of stuff to help him sleep, he has woken up every 40-45 minutes on the dot.  At first it was hard because he would try to pull or move around or talk, none of which he is supposed to do, or can really do for that matter.  This last time however, he realized on his own that he could mouth words and I could understand him.  He can squeeze our hands and that helps.  My heart has broken 1000 times today, but tonight, I looked over and saw my baby mouthing "mommy".  When I went over I held his hand and he mouthed, "what are they doing".  I told him they were giving him some medicine to help him sleep better and so that nothing would hurt.  He then said, "I want my ipod", which made my heart dance.  At that moment I knew he was ok, and that he is a fighter, he is strong, and he is resilient.  My baby is tougher than all of this...as I type this tonight, we arent quite sure when or how or what all is going to happen next.  We are taking it hour by hour at the moment (or 40-45 minutes by 40-45 minutes i should say) but he is doing great so far.  This is our first experience in the PICU and while I have heard from other parents that the PICU nurses and staff are amazing, we hadnt ever had to go through this.  But I can say that so far, they are taking care of him and are on top of everything and are atleast 2 steps ahead at all times. 

I will try to update the site as Alex progresses, but for now I am going to sign off.  Thank you to everyone for all of the well wishes for Alex and our family.  We are so thankful for all of the love and support for our baby boy.

With Faith and Hope Always,
The Green Family




Wednesday, Feb. 1, 2012:  Just a quick update (cont'd from below), we found out today that Alex has strep and unfortunately due to the strep his surgery is going to have to be postponed.  I will update the site as soon as we have a new date for the surgery.  - Jenni Green

Wednesday, Feb. 1, 2012:  While I am not quite sure how to begin my entry, I know that it has been some time since I've updated the site and while I wish I had better news to share, I don't at this time.  Alex had his usual 3 month scans in January.  Everything seemed to be going great, we had a wonderful holiday cherishing the time spent with family, we went skiiing/snowboarding for New Year's (a christmas gift from Alex's Papa Sanden), and Alex has just started playing basketball for the first time which he loves!  Things have been going great for us, we had gotten our lives back and with the exeption of our 3 month trip to the hospital and clinic for "pictures" and blood draws, things seemed pretty much back to normal. 

Once again though, our normalcy has been halted as the latest scans revealed a 6X5 cm mass in Alex's abdomen which is "characteristic of Wilms Tumor".  While we dont know for sure and the Oncologist cannot say 100% without the results of the biopsy, she pretty much told us that it was Wilms Tumor which would mean Alex has relapsed just prior to his 2 year cancer free mark. 

Alex is scheduled for surgery tomorrow, Wednesday, Feb. 2nd at Inova Fairfax Hospital.  They will try to remove as much of the mass as possible, however, because the mass is pushing up against the IVC and Aorta, it is going to be fairly difficult.  The plan is that they will look at the mass in the surgical room and since Wilms is easy to identify they will insert the port into Alex's chest during the same procedure.  We will stay in the hospital for some time so that Alex can recover from surgery and also get his first chemotherapy treatment.  While we dont know exactly what the treatment will entail, we have an idea from the Oncologist and honestly it kind of makes Alex's last treatment plan look easy.  We are back to taking things day by day and since we have had a week or two since we found out, we have been trying to fill it with as much fun-filled stuff as we can.  We went to Monster Jam last weekend (Christmas gift from Alex's Aunt Heather) which was SOOO much fun!  After Monster Jam we took a walk through DC and went to the Air and Space Museum which is one of my personal favorites downtown, the boys liked it too.  Today is Alex's last day of school for awhile, the Oncologist said that he would need to be homeschooled pretty much once he starts his treatment since it is going to be so tough on his body, so after school Alex is getting picked up by his Grandma Smoot and they are going ice skating with his best pal and cousin Eddie.  We have tried to let him enjoy these last few weeks as much as possible because we know how difficult the next months are going to be for him.

Alex is taking everything well.  He was 5 when he was first diagnosed in 2009 and I was kind of surprised but extremely relieved that he really doesnt remember much of the treatment or what he went through before.  I remember Jenny at LWC saying that he wont remember the experience like we do, which I am so thankful for and I really think that this is going to help him get through it again now that he is older.  Alex will be 8 in April, he is still the sensitive sweet Alex that he has always been, he is smart and is more vocal, he has already been asking more questions and wanting to see pictures, etc. of what to expect.  When we told him that his hair would fall out again with the chemotherapy medicine, he just made a funny face and then looked ahead and said, "Well that sucks".  But he didnt get upset, he seems ok with everything so far and is handling it way better than Derek and I.  We are doing ok too, I think better than before maybe because we have also had some time to prepare, we arent being thrown into everything as we were the first time, we are able to look at various treatment options that we might have and we are able to talk to each other better this time around.  We are staying positive and know that Alex is strong and tough, and because other than these cancerous cells that are in his body, he is a very healthy and active boy, and all of these things will help him fight and beat his disease once again.

We will update the site again more regularly with updates on Alex's progress.  Please keep our sweet boy in your prayers for his surgery tomorrow.  While it is very unlikely that the mass will be anything other than Wilms, I am still praying for a miracle because I know that they do happen, I know that God is bigger than statistics and that whatever the reason that this is happening to our family, we will get through this, together!

With Hope and Faith ~ The Green Family


Sunday, Oct. 9th, 2011:  Good news again this past week, Alex's scans (which he took last Monday) all continue to look "stable".  While I don't really like that word "stable" (I would much rather have NED which means "No Evidence of Disease") we are relieved once again that all continues to go well. 

I have to apologize in advance but I am going to vent a little in this post:

There is a term that I have heard a lot lately it seems, it's called "scanxiety"...and while the word itself does accurately associate scan time with anxiety that comes with getting scans...the anxiety frankly sucks so much more than I think that term portrays.  Alex's scans were taken Monday morning.  Derek took him this time to the appointments.  And just to give you a breakdown of how things go...it usually goes something like this:

*We tell Alex about the "pictures" the day or night before.  He has told us he prefers to know only a day before because otherwise he tends to dwell or worry about how many days he has before taking pictures.  When we tell him, there are usually tears involved followed by a series of routine questions, "Can I eat?" and "How long will it take?" and then finally "I dont want to go."
*The morning of the scans we will go in to his room to wake him up gently.  He immediately gets upset and repeats some of the same questions before.  His biggest thing is not getting to eat.  This time we gave him a piece of gum which seemed to help and hold him over.
*The ride to the hospital is usually a quiet one...he will play his DS in the back and occasionally look up to see if we are close; if we arent close he goes back to playing, if we are close he will usually make a groaning or whining noise.  Every once in awhile he reminds us that he doesn't want to go.
*When we get to the Pediatric Imaging room, we sign in and Alex sits quietly beside us while we fill out the usual paperwork.
*We usually quickly get called back to begin  the CTscan.  Alex lays on a flat table and the attending nurse lays a pillow under his head and a warm blanket on top of him.  Derek and I get to wear the usualy black lead apron to protect us from the radiation that emits from the machine.  Meanwhile, Alex is raised up and moved into the "donut" that takes the "pictures".  The machine makes many loud clicks and turning noises and we remind Alex to hold very still.  Alex holds still although tends to look back at us periodically.  When he is done the CTscan he gets his usual "prizes" (stickers, books, sometimes cookies if this is the last test, etc - we've got quite a sticker collection!).  We then go back to imaging for the next pictures.
*We often wait in a different waiting room before getting called back for the Ultrasound.  We go into a dark room and Alex lays on a bed while the tech puts jelly on his belly to get pictures of abdomen.  We look at I Spy books (which are a standard thing that we bring from home each trip) and try to stay distracted while the tech makes various faces while looking at the screen.  They take what seems like a hundred pictures and every time when I am there I have to remind myself that the faces dont mean anything and that they are taking so many pictures because its standard and NOT because they found anything this time.
*When the tech is done, they will excuse themselves from the room so that they can go review the pictures with the Radiologist or Doctor or whomever.  We continue to look at the I Spy books until the Tech returns.  Usually, we are done at this time however this past visit Derek and Alex got called back in 3 times because they needed to look at something further and because they forgot to get a certain picture or 2...
*Regardless, once all pictures are done, we get to leave and then the waiting begins.  While Alex only thinks that he has to take pictures every once in awhile just to see how well he's doing, the "scanxiety" for Derek and I has already begun. 
I would say this feeling actually starts a few weeks before we take the scans.  I always dread the call from Children's when it's time to schedule this appt.  This time, we didnt hear anything all week.  I personally was extra nervous I think because first October is the month that Alex was originally diagnosed 2 years ago, second because they had to keep getting called back for more pictures was worrysome.  As Thursday approached I knew we should find out something possibly Thursday but definitely by Friday.  When Friday morning came and went I decided to call Childrens.  The thought of having to go through the weekend is stressful...I called Derek to ask him again why they said they had to take extra pictures and to tell him that I was starting to get more worried.  He says that it would be ok and that no news is good news...and I think to myself as much as I would love to think that way, I can't.  I call Childrens and leave a message on the "nurse message line".  This is standard procedure if your child is not sick or needs immediate attention which is understandable, there are so many times that we had to call and speak to a person when Alex had a fever or was really sick and every minute to wait seemed forever and its hard to justify taking up a phone line for "scanxiety" when other parents children are really sick.  So I leave a message and wait some more.  Thankfully, Friday afternoon at about 4:30 the nurse from the clinic returns my call.  She informs me that our Doctor is in the hospital that week but that she would try to get in touch with her to find out the results.  She says she will do her best and call me back.  I was very appreciative of this, I thank her for the call and hang up.  I call Derek to let him know and then we wait some more.  I then get in my car to head to Derek's work to pick him up.  We talk about our days and the normal stuff, we eventually get to daycare and pick up the boys with big hugs.  Finally, while sitting in the car in traffic with the boys in the back being rowdy and crazy (it is Friday after all:), we get THE call.  I answer the phone with my stomach in my throat.  The nurse apologizes for just getting back to me and makes a joke about how crazy today was...I immediately take this as a sign that all is ok because why else would she be making a joke.  I laugh uneasily and wait.  She informs me that our doctor let her know that Alex's scans look "stable" and that there is no change.  This is the routine response for us after scan time.  I immediately get teary and give Derek a thumbs up.  I thank her for calling again and wish her a nice weekend.  I feel relief and I feel thankful.  I start to cry a little but have to hold it back from the boys...Derek asks if everything is ok and I just tell him that I am relieved.  I felt the need tonight to share this because "scanxiety" is so much more than just a word.  It is a weight that is incredible that we have had to bear time and time again, and it is exhausting knowing that while we are "stable" this month, in a few months we will go through this process again, and again, and again.  Please do not get me wrong, I am not compaining.  I am incredibly thankful for Alex's health and to be able to say that he is in remission.  I guess I just wanted to get this off my chest and try to help others who havent been through it, understand better what its like.  I read other childrens updates, I read their parents own words and pray for them as well just as I pray for Alex.  I go through the ups and downs with them as I read their words of pain, joy, and similar feelings of "scanxiety".  It isnt fair what these kids have to go through.  It isnt fair for what anyone has to go through when dealing with Cancer...there isnt a single person in this world who hasnt been affected by Cancer in some way and that is a scary fact.  Alex is a beautiful boy who is loved by so many.  Our lives have been changed forever in this experience and while I would love more than anything to be able to go back and start things over for him and do it again without the illness...our family has learned so much and have ultimately grown together through this.  Alex doesnt remember much about his sickness, he just knows he has gone to the hospital "like a hundred times" but that is all he remembers, which we are thankful for.  We will help him in any way we can as he grows and understands more about what he had and went through.
This past weekend we held our "3rd Annual Alex's Walk Toward Wellness" at Burke Lake Park.  It was a beautiful day and we doubled our particpants and tripled the amount we raised last year.  This years donations will go to Believe in Tomorrow and toys to Trevors Treasures.  I will be posting a slideshow of pictures from the walk shortly so stay tuned for that.  As for the long post today, I apologize, I think I was venting some of my frustrations with this disease.  I am reading a new book, it's called, "How I Became a Cancer Slaying Superman Before I Turned 21" by Ben Rubenstein.  He was a guest speaker at our walk this year and while I am only on the first chapter, I have to say I am already sucked in.  Ben was 16 when he was diagnosed with Ewings Sarcoma.  He had just gotten his drivers license, his license to freedom in the world when he was diagnosed with a cancer that while he would ultimately overcome (twice) it would in an instant take away his freedom and innocence of being 16 and thrust him decades forward into a totally different world where he would fight for his life.  Thank you to Ben for joining us this weekend!  Again, pictures to come - Thank you to all who joined us in walking and raising awareness for pediatric cancer!!!  I will update again with pictures soon - thank you for reading (if I havent lost you) and listening.

With Love Always -  The Green Family


Monday, September 5th, 2011 -
Happy Labor Day to all!  As I right this dinner is cooking and the boys are getting restless as it has been a yucky rainy day.  That said, there is excitement in the air for many reasons:

Reason #1 - Tomorrow is the first day of school!  Alex is a big 2nd grader this year and is pretty excited about getting to go back to school and see his buds!  We met his teacher last week and she seems very nice, I know he is going to do well!

Reason #2 - Final preparations have been made so that we will be having the 3rd Annual Alex's Walk Toward Wellness!  This year's walk will again be at the beautiful Burke Lake, VA on Saturday, October 8th.  Please check out the events/fundraisers section of the site for more details.

Alex's next scans are scheduled for October but we do not have a firm date as of yet.  He continues to do amazingly well and has kept so busy this summer with football, basketball, swimming, riding his ripstick, bikes, and pretty much anything outdoors!  While he isnt playing any organized sport this fall, he is VERY excited about trying out Basketball in the winter!

Will update the site once we have the date of his next scans.

With love always,
The Green Family

Friday, July 15th, 2011 - Good news again for the Green household..Alex's scans came back unchanged.  His next scans will be 3 months from now, sometime in October.  We have been blessed time and time again with each scan result and continue to pray for the same!  With each passing scan I seem to be able to feel a little more relief...although looking down the barrell of 5 years until we are in the clear is stressful to say the least.  You never want to rush time, especially when your kids are in their youngest years, you want to enjoy every moment and savor the time you have; it's just hard sometimes not to wish that we could hurry up and pass this 5 year mark.

The boys are both enjoying the summer.  We just returned from a WONDERFUL beach vacation spent with family down in Emerald Isle, NC.  Alex and Jacob had a blast and we had perfect weather the whole time we were there.  Alex LOVED riding the waves on his boogie board and getting to stay up a little later than the norm playing with all his cousins!  Thanks to Nana, Derek and I got to spend some much needed quiet time one evening with a walk on the beach which was really nice.  We were sad to have to leave but had a wonderful time while there!  Below are some pictures from our trip!

Thank you to all for your continuous thoughts and prayers for Alex and our family.  We will post again once we have the date of the next scan scheduled.  Until then, with love always ~ The Green Family

                                              
                                                                                Emerald Isle, NC  (July 2011)

         
        Jacob, Mommy, and Alex - EI 2011                                                  Alex, Daddy, and Jacob - EI 2011

                                                           
                                                                                Alex riding in the waves!

Tuesday, June 28th, 2011 - I cannot believe that I didnt update the site with the results of Alex's last scans in April.  We are happy to say that the scans came back unchanged and we have had 3 more months of a little relief.  It seems as though it is a cycle, we are overjoyed when we get the results and we have a huge sense of relief.  We are able to thoroughly enjoy the first month after scan results and even most of the second...then as the middle of the second month nears, we start to dread the call from CHildrens when they want to schedule the next scan.  We are at that time in the cycle again when we have scheduled the next scan and start to feel the anxiety and stress that this time brings. 

Regardless of Derek and my knowledge of what happened and what is possible - Alex is living his life everyday as a normal child again.  He knows every once in awhile he has "pictures" and doesnt like them, but he has been coping well.  He finished up 1rst grade and had a wonderful experience at his new school.  He did well and made lots of friends, he even won the "Well-Like by All" award in his class.  He was excited for summer but was sad for the last day of school in having to say goodbye to all his friends for the year.  He is looking forward to 2nd grade but for now is perfectly happy spending lots of time in the pool and playing with friends from daycare!

I have FINALLY posted a few flag football pictures I had promised over the last few months, and even found a few others that I wanted to share, check out the photo album page to see Alex in action.
                                                

We ask that you keep Alex in your prayers as we approach his next scan.  His CT and Ultrasound is scheduled for Wednesday, July 6th.

Thank you for your continued support.

With Love Always,
The Green Family



Tuesday, Mar. 22nd 2011 - Alex's next scans have been scheduled for Thursday, Apr. 7th.  We kindly ask for your prayers and warm thoughts as we approach these next scans.  This April will bring us to the year mark since Alex has completed treatment and has been in remission! 

Alex continues to do well (actually "well" is probably an understatement).  He has been thoroughly LOVING flag football and just glows and grins from ear to ear when he's out on the field.  It is such an amazing joy for his whole family to get to watch him play and to get to see him truly have fun and be a kid again!  He is growing up so quickly and he is such a handsome young man...I know I always promise pictures, but I promise I will post pictures of some of his football highlights in the next update.

Thank you for continuing to keep Alex in your thoughts and prayers.  We will update again once we hear how the next scans look.

With love always - The Green Family

Monday, Jan. 31st 2011 - We are very happy to report that Alex's scans came back and all continues to look good.  We will go back in April which will be a year (can you believe it?) since Alex finished his treatment.  We continue to go to the clinic every 3 months for blood work as well which also continues to rebound.  It's amazing the toll that the treatment takes on bodies both big and small!  

We have been enjoying the weather as well as the snow...although we could have done without being stuck in the huge "Thundersnow" storm that hit our area last week.  Alex and I were on our way back from Falls Church that night after his appt at the clinic and we got stuck in the worst traffic jam I think our area has ever faced!  While we left our visit with Jenny from Life with Cancer at 4 - we didnt get home until 10:30 pm!!!  It was quite an adventure though, we played hangman, made paper airplanes (I just happened to have a kit in the back on my car), played "I spy", and munched on a fine dinner of combos and cheetohs!  It was definitely an experience but we made the best of it!

While we always enjoy sledding on the huge hill behind our house, we are anxious for Spring to come. Alex is very excited about Flag football to start and little brother Jacob is going to play Soccer for the first time so Derek and I are resting up and enjoying some lazy weekends with the kids before our schedule gets filled up with practice and games!
Please check out our events/fundraisers page as we are hosted another St. Baldrick's head-shaving event in our area.  It is open to the public and we are hoping to have more shavees this year!  It was a super fun event and all proceeds go to grants to fund research to hopefully one day find a cure to pediatric cancers! 
We thank everyone as always for their thoughts and prayers for Alex.  He continues to do wonderful and we are so thankful everyday for that!  Since Alex's diagnosis and the experience we have went through, we have met so many other children/parents and have heard so many heart-wrenching stories about little ones battling this horrible disease.  Our lives have been changed forever but we have been touched by the love and compassion we have felt from so many.  We pray for a cure and want to do whatever we can to help others that have heard those words, "Your child has cancer."

Thank you again for listening - With Love Always - The Green Family

Monday, Jan. 10th 2011 - Happy New Year to all!!!  We are hoping that 2011 brings a year of good health for all.  We had a wonderful holiday and had so much fun watching the boys open their gifts from Santa!  They were SO excited this year which is a wonderful thing to get to experience.  I cannot believe the holidays are already over though and we are back to the normal grind!

Alex has his scans coming up next Monday on Jan. 17th.  We hope that you will keep him in your prayers as we approach this next scan.  He is feeling well overall and has been pretty healthy.  He is pretty much back to normal and continues to enjoy 1rst grade and playing with his buds.  We have signed him up for Flag Football this spring which he is SUPER excited about!  His Uncle Craig is the coach which means Derek is helping and that Alex will be on his cousin's team which he is SUPER excited about as well since they are almost inseperable!

We will update the post once we receive word from his scans.

Love always - The Green Family


Monday, Dec. 6th 2010 - All continues to go well...we had a wonderful Thanksgiving and were grateful this year to be able to spend it outside of the hospital and with family and friends!  I finally updated the site with the pictures from Alex's 2nd Annual WALK TOWARD WELLNESS - they are on the Events/Fundraisers page of our site...enjoy!  We really liked having the event at Burke Lake Park and are going to aim for the same location next year. 

Alex is continueing to do well, he ended his baseball season this fall with an awesome and first ever for his team - double play!!!  He has really gotten into football though and while he won't be allowed to play tackle, flag football is getting really popular and that is what he has said he wants to play in the spring so it looks like we're hanging up the baseball bag for now but hopefully not for long because we love watching him swing that bat!

We have wonderful news to share, our friend Trevor Blake, the little boy who started Trevor's Treasures, has recently found out after finishing some expiramental treatments in Philadelphia, that he is now in remission!!!  He has battled Neuroblastoma for several years.  We are so thankful for this news and are so happy for Trevor and his family!!!

We are looking forward to Christmas and the holidays this year and want to wish everyone a very Merry Christmas and Happy and Healthy 2011!!! 

With Love Always, The Green Family
 
 
 
 
 
Thursday, Oct. 21rst 2010 - GREAT NEWS!  Alex's scans all appear good!!!  Last Wednesday he actually had 4 scans: An EKG and echocardiogram for his heart, and a CTscan and ultrasound to check his lungs and abdomen.  We got a preliminary report from our Oncologist last Thursday evening on the CTscan and ultrasound...but wanted to wait until reporting until all results came back.  Derek took Alex to his appointment yesterday and learned that all scans were good.  There was no change in the CT of his lungs...there are still small spots but they have not grown at all which is good.  The ultrasound was clear in that there were no evidence of disease in his abdomen!  The EKG and echocardiogram both were normal which was great news since this was the first of those tests done with the port having been removed confirming that the abnormal results we had gotten during our early days in the hospital were just from some kind of interference from his port!  Alex was pleased to learn that he is officially DONE with all his medications (we had a little ceremony throwing them all away last week) and that he doesnt have any further appointments until January!!!  We are breathing a little easier these days and are so thankful things are continuing improve! 

My sister has planned a walk this weekend to raise awareness for pediatric cancer and to raise money for 2 organizations that we feel were a great support to our family: Life with Cancer and Trevors Treasures.  When Alex was diagnosed last year, Heather planned a walk to get our family and friends together in support of Alex and to promote wellness...she called it Alex's WALK TOWARD WELLNESS.  We weren't able to participate at the time but were so touched by the gesture.  She had everyone who attend sign a banner for Alex which was awesome.  This year, she is putting it on again and while it is still a small gathering, we are hoping every year it will become bigger and bigger.  We are SOOO excited to get to participate this year and are very much looking forward to the event.  I have added information for the event on the Events/Fundraising section of the site.  I will update with pictures from the event next week.

Thank you as always for your support!!!  - The Green Family


Sunday, Oct. 10th, 2010 - I can't believe that a full year has gone by since Alex's diagnosis.  Today, as we remember that dreadful day when we learned of our son's cancer, we are different people than we were back then.  How we remember the days when we lived almost carefree and innocent, how wonderful it would be to go back to that but we cant.  Our lives have been changed and while it doesnt seem fair at times, and we do ask "why us" or "why Alex", we are so unbelievably thankful for his health and we remember all those people who helped us get through it. 

I honestly was dreading this day...knowing Oct. 10th was coming I was kind of bummed all week.  I thought for sure it would be a horrible day that we would relive the day he was diagnosed but it wasnt horrible and we got through it just like any other day.  It was a beautiful autumn day and we got to spend it together as a family, healthy, and happy.  Our little boy who just months ago was bald as can be now has a full head of curly blond hair, muscles on his arms that you would think belong to a body builder, and a truly happy smile that was missing for awhile!  He has been having a wonderful year in 1rst grade and is truly enjoying school.  He has made lots of friends and practically skips as he gets on and off the bus everyday!  It is a wonderful thing to see and it never gets old watching him get on the bus every morning!!!
GREAT NEWS!  Alex's scans all appear good!!!  Last Wednesday he actually had 4 scans: An EKG and echocardiogram for his heart, and a CTscan and ultrasound to check his lungs and abdomen.  We got a preliminary report from our Oncologist last Thursday evening on the CTscan and ultrasound...but wanted to wait until reporting until all results came back.  Derek took Alex to his appointment yesterday and learned that all scans were good.  There was no change in the CT of his lungs...there are still small spots but they have not grown at all which is good.  The ultrasound was clear in that there were no evidence of disease in his abdomen!  The EKG and echocardiogram both were normal which was great news since this was the first of those tests done with the port having been removed confirming that the abnormal results we had gotten during our early days in the hospital were just from some kind of interference from his port!  Alex was pleased to learn that he is officially DONE with all his medications (we had a little ceremony throwing them all away last week) and that he doesnt have any further appointments until January!!!  We are breathing a little easier these days and are so thankful things are continuing improve! My sister has planned a walk this weekend to raise awareness for pediatric cancer and to raise money for 2 organizations that we feel were a great support to our family: Life with Cancer and Trevors Treasures.  When Alex was diagnosed last year, Heather planned a walk to get our family and friends together in support of Alex and to promote wellness...she called it Alex's WALK TOWARD WELLNESS.  We weren't able to participate at the time but were so touched by the gesture.  She had everyone who attend sign a banner for Alex which was awesome.  This year, she is putting it on again and while it is still a small gathering, we are hoping every year it will become bigger and bigger.  We are SOOO excited to get to participate this year and are very much looking forward to the event.  I have added information for the event on the Events/Fundraising section of the site.  I will update with pictures from the event next week.Thank you as always for your support!!!  - The Green Family
 
Wednesday Alex will have scans...I can't believe 3 months have gone by already.  We are hopeful that all will go well.  He will have a CTscan, an echocardiogram to check his heart, and an ultrasound.  We are hoping to get a call from the Oncologist before the weekend but aren't sure if we will or not.  We have a follow up appointment Wednesday Oct. 20th and will definitely know how things look by then. 

On another note we have added a few events to the Events/Fundraiser section.  Please check it out.

Thank you all for your support and prayers - I'm not sure how many people check this site still but I feel the need to continue to update at least with the dates of scans and Alex's progress. 
With Love Always - The Green Family

Wednesday, 9/1/10 - 
September is Childhood Cancer Awareness Month

                                       

Sunday, 8/15/10 - Alex is doing amazing!  We had the surgery to remove his port and it was a simple outpatient procedure.  Alex was SO relieved and happy to have the port out, I think it was a constant reminder to him of his illness and now with the port gone, he (really we all) can start the healing process.  He has continued to get healthier and healthier and we are just so thankful everyday for his quick and amazing recovery!!! 

Unfortunately, we had our first scare last weekend when there was a message from our Oncologist telling us they would like for Alex to get scans redone just a few weeks after having his port removed.  Since we knew his next scans were supposed to be 3 months out we were extremely concerned why the plan had changed.  We found out that on the last scan back in July, there was a spot that was overlooked originally and upon further review was recently found by the DC Childrens radiologist.  They wanted Alex to have scans done last week to see if this new spot was still there.  Thankfully, the recent scans revealed that the "new spot" was gone and they said it could have been a viral bug or something that he may have had when he got the CT done.  While this was a horrible scare for us, we didnt let Alex know it and are so careful to NOT let him have any idea that the cancer could come back.  We feel that his mental state is so important not only in his recovery psychologically, but also in healing and preventing the disease from returning.  Since Alex just had a scan last week, our next scans will be in October.  Until then we will continue to enjoy each other, our family, and the rest of our summer! 

I have added a new slide show on the home page to show not only pictures of Alex before and during treatment but to show how far he has truly come in this journey and all of the fun and amazing things we have been able to do together now that he is feeling better and is healed!  Thank you so much for the support - we have been so blessed with having so many people to help us through this horrible experience.  We will continue to update the site with news from scans and any activities or fundraisers we are participating in.  We are just starting to plan our 2011 St. Baldricks event and want this next years to be bigger and better than our first!

~With Love Always - The Green Family

7/19/10 - Things are continueing to go very well for Alex.  Tomorrow morning he will have surgery to remove his port!!!  The scans came back and all looked good - the remaining spots have not grown so we will move forward and are trying not to look back!  Everything is kind of a blur now and I'm not quite sure how we endured all this, but we did!  Alex is feeling good and has been enjoying the summer, we took a quick beach trip last week and he was fearless in the ocean waves (this could be good and bad!).  He was bodysurfing, boogie boarding, and just a little fish the whole time!  While we will have to have appts at the clinic every month to check his blood counts, we wont have scans for another 3 months.  His counts are still low, but they are rising which is a good sign.  He is VERY excited about starting 1rst grade and signing up for Baseball in the Fall, so things are looking up!  We will continue to update Alex's website and will post upcoming events/fundraisers that we participate in if anyone is interested.  I will also try to update the pictures section with more current pictures of Alex so you all can see his new soft blonde hair thats growing in!!!  Thank you so much for all the warm thoughts and prayers - Love Always, The Green Family

6/30/10 – What a beautiful day today is, we finally have a little break from the hot sticky humidity and have a nice cool day!!!  Things have been going great for us lately…Alex is feeling better and better every day.  He has been complaining a little of his stomach hurting, something that I will ask our doctor about but I am thinking it might just be because it takes time for chemotherapy to leave your system…but other than that he is full of energy, full of LIFE, and eating us out of the houseJ!  He has gotten back quite a bit of muscle (just last weekend he and his cousin, who is also 6 and very close to Alex, were sitting on our front porch comparing and feeling each other’s biceps.  I was able to grab my camera and snag a couple of pictures, something I am sure they will thank me for laterJ).  He is back to daycare full-time and loving it!  He had a hard time at first keeping up and would fall asleep within minutes of me picking him up in the evenings, however, is able to keep up now and spending his days riding bikes, going for walks, playing in the pool, playing with his friends, and getting to do all those important things that people sometimes take for granted.  I was on the phone with a lady from my insurance company just yesterday; she has called throughout this ordeal and has offered advice, guidance, and just has been someone to talk to if we needed it.  Anyway, as I updated her yesterday on Alex and we were getting off the phone she said something that was totally true: “I am so happy for you all and that things can get back to normal, we too often take normalcy for granted”.           
In my last update I talked about a few things that I had learned in this experience, but there are so many more things that I left out that have kind of been playing over and over in my mind.  Of course we all know that our kids are the most important people in our lives, and that watching your child go through a life-threatening battle there are no words for.  We are still dealing with that and will the rest of our lives.  We know that we shouldn’t ever take our kids for granted and that we should tell them we love them every day.  But there is more…I am the type of person who never really knows what to say when someone is sick.  Of course I feel for them but the words just never seem to come out right or at all for that matter.  I used to be scared to ask how someone was doing because I was afraid it would be too painful for the person to talk about.  But I know now that asking shows that you care.  And while for a period of time in the beginning, I hated the “How are YOU doing” question…sometimes I just wanted to scream, “How do you think I’m doing!”  I used to think that the person asking that question just wanted to see me break down, because that would be the inevitable outcome.  However, there are so many people who just want to help and perhaps knew what we didn't at the time, that talking about it can help.  We did learn ways to avoid the question if we didn’t feel like talking by just talking about Alex and his progress and staying positive that way.  But I think my point is, don’t be afraid to ask someone going through an illness, or who has a family member going through something because you are afraid it is too painful for them.  One of the things that helped Derek and I was all the support we felt…and sometimes, just that 1 person asking how Alex was doing, helped us know that people were there and were praying for him and really cared, and that goes a long way when you are dealing with something like this. 
There are so many little things that we can do every day to help others who are going through such tragedies.  I have been trying to think of some great scheme for something I can do to make a big difference…like start an organization or run a million marathons (yeah right!) or something to change the world.  But realistically, there are SO many GREAT programs already out there and so many ways we all can contribute in little ways to those programs that will make a big difference.  Every time I go through a McDonalds drive-thru (and I refuse to disclose how many times that really isJ) I now ALWAYS put whatever change I have in the Ronald McDonald house donation box.  I figure, if I have enough money to buy this Quarter Pounder, than I have enough money to donate to a great charity.  Sometimes it’s a good amount of change, sometimes its only pennies, but every little bit helps!  And yeah, the thought has crossed my mind that what if some corrupt empty-hearted person takes the money and it doesn’t get to the charity – but then again what if they don’t?  I would like to and will eventually sign-up to volunteer for Make-a-Wish because how wonderful it is to be able to help give a sick child a wish -ANY WISH!  That concept for children is amazing; to be able to tell a child that they can have 1 wish – anything that they want – is magical.  Do you remember blowing out your candles every birthday and wishing for something (a pony, a million wishes, whatever) and kind of knowing that you might not get what you were wishing for…this is a wish that will come true!  And not only that, it gives these children HOPE in a time when they might not be feeling very hopeful…it gives them something to look forward to at a time when they can’t look forward at all because they are forced to live in the moment from appt to appt and from blood count to blood count.  Organizations like these need people to make them work…and kids like Alex and families like ours need these Organizations. 

There is a little boy named Trevor Blake, we have talked about him before in updates and how he is an amazing little boy and started “Trevor’s Treasures” a few years ago with his mom.  He has relapsed again with his Neuroblastoma and they have been travelling weekly to Philadelphia and back for his treatments.  I have been praying for him and his family and keeping up with the updates his mom posts.  A friend of theirs who also has a daughter who has Cancer is doing a toy drive to collect toys for Trevor’s Treasures, so I am sharing this link in case anyone is interested:
http://www.caringbridge.org/visit/sadiemaelauer.  I am also attaching the link to the news story that was run on Trevor a few weeks ago and definitely shows how amazing Trevor and all of these children really are: http://www.wjla.com/news/stories/0510/734888.html. 
 
Alex has his scans scheduled for Tuesday, July 6th.  We are hopeful that it will be good news and we will be able to have his port removed shortly after.  We will update the site as soon as we know how the scans went.  Until then, have a wonderful and safe 4th of July weekend!  Thank you for all your support and continued prayers for our family. 
 
Love Always – The Green Family
 
PS-We found out that Make-a-Wish is using one of Alex's pictures from our Disney trip in their next newsletter.  You can go to www.midatlantic.wish.org to sign up to receive the Make-a-Wish newsletter if you want a copy!

Thursday, 6/3/10:  Today didn't start off wonderful - we woke up expecting a call from the Oncologist, Alex had an early dentist appointment which he HATED of course, and its hotter than anything outside.  But with that said, today has become one of the best days I think we have had in a long time!  Today we found out that Alex's biopsy came back and everything looks good and by looks good I mean he won't have to any further chemotherapy!  He is considered to be in remission!  I have personally been on (maybe even above) cloud 9 since this morning when we found out.  The amount of relief that we feel is overwhelming.  It has been 8 months since we have actually felt happy and I mean truly happy - I almost forgot what that felt like!  While Alex still has a few minor things to do before being truly done...we have told him the good news but have also mentioned these to him so he knows there will be a few small appointments coming up for various things.  So while we know this is a huge day and wonderful news, to him, he still really only understands that there are a few more things to do until we are officially done!  I think he can feel our excitement and knows that this is something to be happy about for sure!  We will have scans in 1 month and as long as those look good, than he will have his port removed and on that day I know we will definitely be having a HUGE celebration:)

Today has turned into a WONDERFUL day and we are so grateful to everyone for the support we have had during this battle that has changed our lives.  There are a few things that I personally have definitely learned from this experience and want to share.  I will NEVER take my kids for granted again...whether they wake up every morning at 6 am (or earlier) or dont take a nap and are cranky or are argueing with each other all day long, I will love them unconditionally and  I will never let a day go by where I dont tell them I love them.  I will make time to read a story everynight, even if my favorite show is coming on and will show them how wonderful and important they are to me every chance I get.

Thank you so much for your love and prayers, the little packages Alex has gotten in the mail brought a smile to his face everytime and for us just seeing that smile amidst all the horrible things that were happening to him helped.  He is a superhero, he is a brave boy, he is strong and wonderful and we are so very proud of him!!! 

I will update the site once we have the date for the scans scheduled.  Until then, we are going to be enjoying everyday and celebrating with our son!  Thank you again so much - With Love Always, The Green Family


Monday, 5/31/10:  Happy Memorial Day to all!  What a beautiful but HOT weekend it has been.  Alex's surgery on Thursday went very well, the surgeon was able to remove both the 5 mm and 10 mm spots as we were hoping!  Unexpectedly however they did find an additional spot that was not on the CT scan and while he was unable to remove it, he was able to sample it to send it for a biopsy in addition to the other two spots.  We are expecting to find out results to the biopsies within the next week or two.  With the holiday weekend it might be next week before we find out anything.  Alex is recovering amazingly fast!!!  Friday morning (the morning after the surgery) the very first thing he said when he woke up was, "I want to get out of bed."  We told him that we could certainly do that but that we should wake up slowly and maybe have some breakfast first.  He then said, "Do you know why I want to get out of bed?  I want to play paper airplanes with Molly and I can't play if Im in bed."  We were very pleased at his determination and courage!  How far he has come from the first few extended hospital stays when we had to bribe him with everything possible to get him out of bed and standing up!  Maybe he knows the ropes now and knows that to be able to leave, he has to get out of bed!  Anyway, Friday morning the surgeon removed the chest tube that was most of Alex's discomfort and a little while after that, Alex was up and about.  We made paper airplanes and did several laps around the unit.  After about 2 laps he remembered the treasure chest full of toys and asked how many laps he needed to do to be able to pick out a toy.  I told him maybe 5, so we kept going.  He was on his 10th lap when he asked, "Do you think 10 is good?"  I told him that I thought it was and he said, "Let's do one more just to be sure."  When the nurse saw him in the hall later that day doing more laps, she said, "You'll be going home today for sure!"  He did great, by the evening we were packing up our stuff and heading home. 

The rest of this weekend we have been trying to lay low, Alex's only restrictions right now are no wrestling, jumping or heavy lifting.  He has 3 small incisions that are well padded with guaze and tape and we are doing all we can to keep him from doing the things he isnt allowed.  He is full of energy and seems totally back to his old self.  We went down to Route 1 yesterday morning to watch the motorcycles head to D.C. for Rolling Thunder!  We sat in the median with several other bystanders including some veterans and some other kids.  We waved at all the bikers as they rolled by and the boys loved it!!!  Some bikers would honk and lots would wave back - it was pretty cool!

Today we have just laid low again, we went to MIchaels and got some arts n craft stuff to do to keep busy, we went to Wegmans for pizza (Alex's favorite!) and came home and played in the backyard.  The boys have been playing great with hardly any fights.  Jacob saw Alex's bandages and has given him extra hugs it seems!  They have made up this thing where they hug each other and hold on for awhile and say, "Forever hugs" over and over.  Its sweet!  It has been a beautiful weekend and we have been extremely glad and happy to spend it at home with our boys!

Happy Memorial Day to all - thank you for your continued thoughts and prayers for Alex!  Love Always - The Green Family

Tuesday, 5/25/10 – I cannot believe it has been a month since our last update.  We have so many things going on recently, this will probably be our biggest update ever (well in length anywayJ).  I will start off with the AMAZING Make a Wish trip we took to Disney the first week of May.  From the moment we left (at 0430 in the morning) to the time we returned home, our trip was wonderful.  We were picked up from home in a stretch limousine…I felt bad for the driver since it was so early!  Alex and Jacob were SOOOO excited when we opened the door and they saw the car!  Of course they had to push all the buttons, they each helped themselves to the water bottles and candy provided and just had permanent grins on their faces from that moment on throughout the week!  We got to the airport and we were a little nervous that the boys’ would start to get upset about getting on an airplane, however, they surprised us completely and got on the plane with smiles (Jacob was the only one who briefly hesitated when stepping on board).  They loved every minute of the plane ride and while Jacob held my hand during takeoff, he didn’t get scared or cry one bit.  They LOVED looking out the window and finally get a chance to see the clouds from above.  It was a beautiful morning to fly and we were so happy the boys’ enjoyed it as much as they did!  We arrived into Orlando and were greeted by someone from the Give Kids the World Village.  She escorted us and all our bags to our rental van which the boys again thought was so cool!  The van had 2 rows and Alex (who loves sitting in the way back any chance he gets in other peoples cars) immediately took his car seat to the back and sat down.  The morning was filled with so many fun firsts for the boys, and was an indication of how our week would be spent!
Happy Memorial Day to all!  What a beautiful but HOT weekend it has been.  Alex's surgery on Thursday went very well, the surgeon was able to remove both the 5 mm and 10 mm spots as we were hoping!  Unexpectedly however they did find an additional spot that was not on the CT scan and while he was unable to remove it, he was able to sample it to send it for a biopsy in addition to the other two spots.  We are expecting to find out results to the biopsies within the next week or two.  With the holiday weekend it might be next week before we find out anything.  Alex is recovering amazingly fast!!!  Friday morning (the morning after the surgery) the very first thing he said when he woke up was, "I want to get out of bed."  We told him that we could certainly do that but that we should wake up slowly and maybe have some breakfast first.  He then said, "Do you know why I want to get out of bed?  I want to play paper airplanes with Molly and I can't play if Im in bed."  We were very pleased at his determination and courage!  How far he has come from the first few extended hospital stays when we had to bribe him with everything possible to get him out of bed and standing up!  Maybe he knows the ropes now and knows that to be able to leave, he has to get out of bed!  Anyway, Friday morning the surgeon removed the chest tube that was most of Alex's discomfort and a little while after that, Alex was up and about.  We made paper airplanes and did several laps around the unit.  After about 2 laps he remembered the treasure chest full of toys and asked how many laps he needed to do to be able to pick out a toy.  I told him maybe 5, so we kept going.  He was on his 10th lap when he asked, "Do you think 10 is good?"  I told him that I thought it was and he said, "Let's do one more just to be sure."  When the nurse saw him in the hall later that day doing more laps, she said, "You'll be going home today for sure!"  He did great, by the evening we were packing up our stuff and heading home. The rest of this weekend we have been trying to lay low, Alex's only restrictions right now are no wrestling, jumping or heavy lifting.  He has 3 small incisions that are well padded with guaze and tape and we are doing all we can to keep him from doing the things he isnt allowed.  He is full of energy and seems totally back to his old self.  We went down to Route 1 yesterday morning to watch the motorcycles head to D.C. for Rolling Thunder!  We sat in the median with several other bystanders including some veterans and some other kids.  We waved at all the bikers as they rolled by and the boys loved it!!!  Some bikers would honk and lots would wave back - it was pretty cool!Today we have just laid low again, we went to MIchaels and got some arts n craft stuff to do to keep busy, we went to Wegmans for pizza (Alex's favorite!) and came home and played in the backyard.  The boys have been playing great with hardly any fights.  Jacob saw Alex's bandages and has given him extra hugs it seems!  They have made up this thing where they hug each other and hold on for awhile and say, "Forever hugs" over and over.  Its sweet!  It has been a beautiful weekend and we have been extremely glad and happy to spend it at home with our boys!Happy Memorial Day to all - thank you for your continued thoughts and prayers for Alex!  Love Always - The Green Family – I cannot believe it has been a month since our last update.We have so many things going on recently, this will probably be our biggest update ever (well in length anyway
When we arrived at Give Kids the World (GKTW) Village, just in pulling through the gates we knew it was going to be a magical place!  The Village is totally designed for kids, it’s kind of a fairytale world with a Mushroom house carousel, a Gingerbread House restaurant, a Safari designed movie theatre and train station, a Dinosaur putt-putt golf course, a beautiful pool and water play area, a Candyland themed playground, a Castle (I’ll talk about that more), and one of the boys’ favorites was an Ice Cream Parlor that was open from early morning to night!  Right when we checked in Alex and Jacob were given little stuffed animals and Alex was told he was “The Boss for the week”.  It didn’t take him long to realize the value in this and from about Tuesday through Friday we had Ice Cream for BreakfastJ!  I could go on and on about the magical place that Give Kids the World is: from the volunteers who work there who provide such attentive love to the children, to the design of the village being able to accommodate ALL children, and the events they held each morning and night to just make the whole experience and trip stressfree and fun, we had a wonderful time and really could have just spent a week there!  There is a book I just finished reading called, “Gift of Life” which is a story written by Henri Landwirth who is the founder of GKTW.  He tells his story about being a Holocaust survivor, then coming to the US and makes his way up from being homeless and broke to becoming a very successful hotel entrepreneur, to his vision and completion of the Give Kids the World village.  He believes that any child who has to face these terrible life-threatening illnesses, should be able to have a place they can come to to just be a child and be able to smile and to take away some of the pain and stress that they face in everyday life.  The book was very inspiring for me and I would recommend it to anyone!  One of the special things that the Village has is called the Castle of Miracles.  In this Castle, each Wish child is given a mirrored glass star which they can decorate however they like (Alex wrote his name on his).  They place the star in a treasure chest and you watch a movie which shows a fairy who is taking the star.  The treasure chest shakes and when the volunteer opens it again, the star is gone.  We are given a card and told to return the next day…when we return Alex’s star was placed on the ceiling along with over 50,000 other stars where they will stay forever!  We found Alex’s star and took pictures of it as it stands along with the other stars in the building.  It was such a serene setting; the pictures that I took don’t really do it justice.   I could go on and on about the Village and the wonderful opportunity that it provides children who are sick and dealing with so much!
 

Our week was amazing, we had tickets to all of the major Disney parks: Magic Kingdom, Hollywood Studios, Animal Kingdom, Seaworld, Universal and Isles of Adventure, Aquatica (a new Seaworld waterpark), and we even snuck in a night at Medieval Times for Dinner.  While we didnt make it to all the parks, we did meet pretty much every Disney Character possible (Mickey, Minnie, Pluto, Goofy, Daisy Duck) and other Characters at some of the other parks (Spongebob, Power Rangers, Leo from Little Einsteins, Handy Manny, Woody from Toy Story, Ming Ming from the wonder pets, and all of the Dr. Suess characters!) we even met Santa Claus one night at the Village!  We had a special meeting with the Power Rangers and while Alex's wish was to meet the Ninja Turtles, meeting the Power Rangers was probably better.  He has liked the Power Rangers for a few years, we have tons of Power Rangers figurines, motorcyles, dress up clothes, etc. so for him, it was a very special meeting!  The boys got tired each day so we tried to do a park in the morning and then head back to the Village to swim in the pool.  Poor Jacob didnt really get a good nap all week and towards the end of the week it started to show!  Luckily, with Alex's Make a Wish pins and badges, we didnt have to wait in ANY lines as we would have normally, this was a huge help since Alex gets fatigued easily and couldnt last as long as he might normally have been able to otherwise.  People at the park though seemed to be overrall understanding of this and we didnt have any issues having cut the line passes...they really seemed to think of everything to make the trips for Alex and the other Wish children so special!

We are so very grateful to both the Make a Wish Foundation and to Give Kids the World for providing Alex with this opportunity to have a much deserved break from it all!  There are so many wonderful people involved in these organizations, there are so many Corporations who contribute and helped build these foundations, and to them we are also grateful!  I don’t know if these people can ever really truly know how much their kindness and generosity helps so many families in need.
 
We met with Dr. Dome at Children’s Hospital in D.C. yesterday to discuss Alex’s status.  We were happy with our discussion and he gave us kind of more big picture answers to questions we had regarding long term effects, future research being development to look at possible causes and further treatments possible in the events of relapse, etc.  Alex completed his chemotherapy regimen and had his final scans on May 10th (the Monday after we returned from our trip).  Since then we have spoken with our Oncologist, the Surgeon, and now Dr. Dome to find out what the plan is.  Alex has several small spots left in his lungs which unfortunately are not all in one area.  The 2 biggest spots are actually very small which was incredibly good news for us.  The largest is 10 mm and the smaller of the 2 is 5 mm.  The Surgeon (who we are talking further with today about specifics) believes he can easily remove the 10 mm spot and is confident he can get the 5 mm.  The only issue is that because the 5 mm spot is so small, and it is located higher in the lung (in the middle lobe of the lung), it might be difficult for him to find it.  With that said, the plan is to remove the spots and test them. If the spots contain immature cells which are cells that have potential to grow and spread then Alex will undergo probably about 12 more weeks of Chemotherapy treatment.  The reason for this is because in addition to the 5 mm and 10 mm spots, he has several (we need to find out how many exactly) small pinpoint spots left. These pinpoint spots are so small they are impossible to biopsy or remove and we have no way of knowing what these spots are made of (immature cells, mature cells, or scar tissue).  The thought is that they will assume that whatever cells make up the spots that they remove, are also what makes up the pinpoint spots.  Alex will be monitored by CTscans every 3 months so we will be able to catch very quickly if these pinpoint spots start to grow.  There is a 30% chance that these pinpoint spots will grow.  This of course all is depends upon what the 2 larger spots are made of, if they are made of mature cells or if they are just scarring, than we will not have further Chemotherapy right now and we will just monitor those pinpoint areas.
 
Alex’s surgery is scheduled for this Thursday, May 27th at 12:15 at Inova Children’s Hospital in Fairfax.  He will be in the Hospital for about 5 days.  We plan on talking to Alex about the upcoming Hospital stay this evening and while he certainly isn’t going to be happy, we plan on highlighting the things that he does like about the hospital: getting to watch t.v. in bed, playing Wii (once he is able to of course), ordering pizza in bed, and seeing some of his friends from ChildLife services (ie. Holly and Molly).  This is tough but Alex has already been through so much, he will bounce back from this as well and all these experiences will make him a strong boy!  It is just one more thing we have to do to get our boy better!
 
Thank you so much for listening, I apologize for it being so long since our last update.  We ask that you please keep Alex in your prayers, especially Thursday.  With Love Always, The Green Family.
Tuesday, 4/27/10:  We have very exciting news that we heard officially from the "Wish People"!!!  We are going to take our Disney trip this weekend!!!  The timing worked out and they were able to get us into the Give Kids the World village as we were hoping!  We will fly out early (very early actually) Saturday morning and will spend the week down in Orlando!  The boys dont know yet...they know that we are going but we havent told them when.  The Wish people will come to our house Wednesday night with cake and balloons and will get to surprise the Alex with the good news!  We are so excited but at the same time it is kind of unreal!  Alex does have an appt Friday to check his counts before we go.  It will be a wonderful get away and a whole week where we are going to try very hard NOT to think about procedures or being sick, but to focus on our family and the boys and just having an awesome vacation!!!

Alex had his last dose of chemo last week and since we finally got the ok to use Tylenol, we didnt have to go to the hospital for his fever!  He did still get a fever, but it didnt get so high that we needed to go.  I thought we would be so much more excited to get through to the last dose but honestly since we know that we will most likely have more to do, it was kind of an emotional day.  Derek took Alex to the appt and the day just wasnt at all like I imagined it would be.  We know we have some tough things ahead of us, but I feel like we are getting closer to being done!  While words cannot really describe how we feel about having to continue the chemotherapy, I feel like we are close.  Alex is feeling well overrall, he had a rough few days last week with the chemo, just in belly aches and energy level but he is feeling better now. 

I have called and left a message today to make an appointment with Dr. Dome, the Chair of the Wilms' Tumor Board for the Children's Oncology Group who is located at Children's in DC.  We are going to try to meet with him after Alex' final scans May 10th.  We aren't quite sure yet what questions we will have for him, but are hoping he can provide more insight or maybe just help us get a better understanding of the big picture.

Alex started the Hopecam thing with his school last week and while he was hesitant at first, he absolutely loves it!  The kids all say hi to him and he gets to interact with the classroom a little bit.  While he only does it for about 15 minutes in the morning, it seems to be just enough time to get some interaction with his classmates and see what their up to.  His teacher sent home some "sight words" for him to review (all of which by the way he did extremely well with when Mrs. Lindsey his homebound teach went over them with him) so he'll get to participate a little more with that.  Im really glad that we decided to pursue it and feel that it is a good experience not only for Alex but also for the kids in the class!

I dont know if we will update before our trip or not, but we will definitely update when we get back!  I will try to remember to upload the birthday pictures before we go also:).  Thank you again for your thoughts and prayers!  Love always - The Green Family
 

Wednesday, 4/14/10:  Today is a busy but good day.  Alex had an appt this morning to check his counts and while they are low still, he does NOT need a transfusion as they thought he would.  His ANC is 460 so he is still neutropenic but he is feeling good, eating well, and just overrall happy:)  He did awesome at his appt, he was actually smiling while they did the blood pressure, weight, temp, height, etc!  We have come a long way since before even those things upset him.  While he didnt like the finger poke (and he made it very clear to everyone in the clinic today that he didnt like it), it was quick and we were happy to learn we were done for the day.

We met with his normal Oncologist today and got a few more questions answered from the last phone conversation we had.  Alex will have his last dose of chemo Monday...last dose of this regimen.  I am feeling a little better about the next regimen because in thinking positively this past one has really gone by so fast so while it seems long to start anew, this one will go fast too and hopefully we will be through this soon!  About 2 weeks following Alex' last chemo dose on Monday, he will have "final" scans and evaluations and conferences by our doctors, the childrens national docs in dc, and the pediatric surgeon at INOVA.  They will determine upon reviewing the scans whether a CT guided biopsy or slightly more invasive surgery will be done to test/remove any remaining spots in his lungs.  After that, we will start a new chemo regimen to last 3-5 months where he will have  3 week cycles that are 1 week/5days a week chemo and 2 weeks of rest.  It will be outpatient chemo that will be hard on his counts but may not necessarily mean time in the hospital.  Right now we are at Jenny's at LWC and Alex is playing/talking.  I am so glad we decided to start bringing him to Jenny because it has helped him so much!
We had such an AMAZING weekend last weekend celebrating Alex' 6th birthday!  We had gotten the OK from the doctor to do it despite Alex' low counts.  While we had more hand sanitizers on the scene than most bday parties - the kids all had so much fun.  It was a perfect day - we couldnt have asked for anything more!  Thank you to all our friends and family who were able to come, and thank you also to those friends and family who (as hard as it probably was) had to stay home because of colds/allergies/etc.  While we wished you could've been there, we definitely appreciate you looking out for Alex' wellbeing.  I will try to post pictures to the site...I know I still owe you all pictures from our Baldricks event as well!  Thank you as always for keeping Alex in your prayers. 

I will leave you today with something funny he said in the car on the way to the Doctors (by the way I have no idea where this came from):
 
"I have the world in my hands!" (Alex lifting his hands in the air)
 
"You do have the world in your hands." (Mommy smiling and looking in rearview mirror)

"Well kinda.....apparently I do......ya, I do." (Alex looking down and going back to playing his game)



Friday, 4/2/10:  We have been very busy lately it seems...there is so much to update since our last posting...

Ill start with some exciting news: Alex finally decided what his "Wish" was going to be for Make a Wish.  He decided to wish to go to Disney World and that he wants to meet the Ninja Turtles!  The wish people are working their magic and we are hoping to go the end of April before Alex' final scans and surgery.  We think it will be perfect timing and our Oncologist (as of this past Wed) has ok'd the trip and the timing of the visit.  The boys as you can imagine are super excited although neither have been on an airplane so that should be interesting!  We would stay at the Give Kids the World village, which if you have ever heard of it know how amazing it is.  It has all the medical facility/supplies that Alex might need but looks like a fairytale village at the same time.  I have worked for 2 companies who donate quite a bit to GKTW so I am very familiar with the village, never did I think we would stay there one day but know what a wonderful place it is for families to stay.

Now for where we left off at our last posting:  Alex did get his x-ray and ultrasound done on Monday, March 22nd.  While we didnt meet with his oncologist for his chemo appt on the 24th, we were told his scans looked "stable" with "possible slight improvement".  We are continuously told this is positive since there is no growth but that is very frustrating at the same time when all we want is for this to just go away.  On the 24th his counts were so low that he was unable to get chemo.  With that said however he did NOT need any sort of transfusion or anything which was good...the whole blood count thing is hard to explain, all I know is that Derek and I are learning way too much about blood! 

Since Alex' counts were low, he unfortunately was not able to go to the head-shaving party fundraiser.  Well, I should say we were going to allow him to come in the beginning just to see Daddy and PopPop shave their heads, but since he didnt want to wear the mask, we decided it was probably best anyway not to risk it and to have him stay home.  Jacob ended up staying with Alex which helped and they were actually happy just looking at all the pictures and seeing PopPop Sanden come back to the house sans hair!!!  We had our own little party that night with all the leftover beads, funky glasses, kids toys and glow sticks right at home which the boys enjoyed quite a bit!

Alex had another appointment for chemo on Monday, March 29th which went better.  His counts had gone back up (ANC 2300) and so he was able to get his chemo this time.  I understand that there is a little concern about going more than 8 days without the scheduled doses so we were ok since there was only a 5 day lapse.  Alex did well as always and got the preservative-free vinicristine but unfortunately that did not prevent him from the what is now usual fever and trip to the hospital.  Late Monday night Derek took Alex to the ER for the usual antibiotics and tests to make sure there was no infection.  They didnt get to leave until 0100 am in the morning so BOTH were extremely tired the next day (although Derek said Alex thought it was pretty cool that he was awake when it was technically "the next morning")!  They returned to the clinic on Tuesday for follow up antibiotics and all went well.

Since we havent gotten to see our Oncologist as of recently, we did have a phone conversation with her just Wednesday of this week to ask some questions that we have had recently since we are coming to the end of this treatment protocol.  As hard as it would be to type out how we feel or what is next, I think I will just type it out matter of factly what she said we should plan for:

*Alex will have surgery at the end of his treatment to remove/test any spots left in his lungs. We are estimating the next chemo to be April 19th with the scans to be 2 weeks after that which would be around May 3rd.  Surgery would basically be scheduled right away once they review the scans and determine what sort of surgery/biopsy needs to be done.
*We should plan on starting another chemo regimen once this one has finished based upon past stage IV cases and where Alex is at this point
*We do not know at this point how long the next regimen will be, that will be determined once the group looks at his final scans and evaluates how well his body has done and how effective the chemo has been thus far
*It will be a new kind of chemo medicine that he has not had so far (I did not ask what it is called), it will be 5 days a week (M-F) but we do not know how long the new regimen will last
*It will be outpatient chemo, but it will be harder on the body and harder on his counts and therefore could mean more time in the hospital
*Alex has done very well so far and his percentage of survival does not change just because it has not completely cleared up at this point, we are still looking at 85-90%.

Alex' spirits are good, maybe its the nicer weather or his upcoming 6th birthday!  We have kind of been talking with him about the fact that sometimes things change and that even though his birthday is coming up (we had kind of used that as a timeline for him as to when we should be done all this) there might be more for us to do before we are through.  We remind him all the time what an amazing job he is doing and how proud we are of him!  He knows that we need to do whatever the doctors tell us we need to do to get better.  I look down at the bracelet Derek and I wear everyday and remind myself that we will go whatever distance it takes to get him better!  He is my inspiration to be strong and I cannot describe at all how proud I am of him.

Thank you for your continued prayers and support of our family.  We are so lucky and grateful to have so many people in our corner helping us through this battle!  We wish everyone a wonderful Easter weekend!  With Love Always, The Green Family.

Tuesday, 3/16/10:  So last Thursday ended up being a longer day than we hoped.  Alex' platelet counts were low and so he received a platelet transfusion.  All went well and he had no reaction to the transfusion.  He also had to start a few new medicines to treat for some minor side effects he is beginning to have from the chemo.  He has started on "magic mouthwash" to use 2x daily and over the counter pepsid to help reduce stomach acidity.  We have been giving him his medications routinely and have come to the conclusion that if we were to give him liquid chocolate, he probably would still be upset.  As probably most 5 year olds, he hates taking medications but over the past few days he has gotten use to them.  He is a trooper and knows that we will do whatever the doctors say we have to do in order to get better!

He is scheduled for his next chest x-ray and ultrasound on Monday, March 22nd.  Although we wont do anything different with regards to treatment, we will have an update on how things are looking.  His next chemo, which will be his 2nd to hopefully his LAST will be that next Wednesday, March 24th.

As I mentioned before we are hosting a St. Baldrick's hair shaving party to raise money for childhood cancer research.  Alex' page is official and while we are still negotiating a venue for the event, you can sign up to participate at
www.stbaldricks.org/events/AlexGreen.  Once the location is confirmed, detailed info will be updated on the St. Baldricks site as well as on our events page.  We are looking forward to the event and think it should be lots of fun!  Thank you for all your support as always, The Green Family

Tuesday, 3/9/10:  Things have been pretty busy for us as of lately.  With the warmer weather and luckily while we are nearing the end of flu season and the threat of the swine flu, we have been able to get out a bit more than we had over the past few months.  Since Alex' counts were back up after having finished the Nupogen injections,  we decided to go to Baltimore two weekends ago.  We got there on Saturday and stayed in a beautiful hotel right on the Harbor with a conjoining room where Derek's Brother, Sister in law, Mother, and Alex's cousin Eddie stayed.  We got to go on a tour of a US Coast Guard Ship which Alex's favorite part was looking down a window into the kitchen where they were preparing pizza (of all things)!  We went to ESPN zone to play games, the kids were racing each other on everything possible and then topped the night off with dinner at the Hard Rock Cafe.  The next day we went to the National Aquarium which was an awesome finish to the weekend!  We saw the dolphin show where we all got splashed (we were sitting in the "Splash Zone" so it should have been more expected) and Alex loved looking at the different types of sharks.  The boys were practically running from exhibit to exhibit.  We had a great time, it was a much needed "get away" and one we were greatful to be able to take!  This past weekend the weather was so nice we were able to get outside and enjoy it - we took the boys to a local park Sunday afternoon where they played on the playground and Alex brought his ball and glove to throw back and forth with Daddy. 
Alex had his chemo appointment last Wednesday 3/3/10 and unfortunately that night we had to go back to the hospital because he got a fever.  This was the third time in a row after chemo this has happened.  Everything was fine and all of the tests came back negative as usual.  Next time, our doctor is going to order a preservative-free version of the same chemo medicine.  The theory is that some kids have reactions to the preservatives and that is could be what is causing Alex' fever. 

Tomorrow we have an appt at the clinic to check Alex' blood counts.  He has been bruising pretty easily lately and has been saying he's colder than usual so we're thinking his counts could be lower again...although with that said everytime we try to guess we are usually caught off guard.  We are hoping though that since we are out of flu season, while we have to continue to be very careful about germs and keeping Alex away from diseases while his counts are lower, we can potentially get out a bit more as we were able to the past 2 weekends.

I cannot believe how fast this whole thing has really gone.  In the beginning when Alex was diagnosed, I didnt know how we were going to get through 6 months of this new reality.  As we near the last 6 weeks, while they seem to be moving the slowest, we are basically just focusing on enjoying our boys and our family as much as possible.  Alex has come so far and we are so very proud of him!  He has been through so much that he deserves this break and to have some fun in between the appts.  There are so many emotions that you feel as parents and at times you feel so overwhelmed.  I am proud of Derek and I as well because I feel we have also come a long way.  I remember in the beginning, going to our early appts or in the hospital...one of the nurses or doctors asked during a moment when I was crying whether we were "newly diagnosed".  At the time I remember thinking 'Does it really matter?'.  Now I think we have grown as parents, as husband and wife, and as individuals.  We know our journey is far from over and that is really scary, but we are getting through this and are looking forward to these next few weeks hopefully ending with some good news for us.  We will try to update the site again following tomorrows appointment.  Please continue to keep Alex in your prayers...With Love Always, The Green Family.


Thursday, 2/18/10:  We've had a good week so far, Alex is doing well.  We had an appointment with Jenny from Life with Cancer yesterday afternoon and Alex went in to see her all by himself.  Last visit was the first time I left him in the room with Jenny by himself and while he was upset that I left, that didnt last long and they played for almost an hour.  This week in the car on the way to the appointment, I told him I would just sit on the couch while he played and he said, "That's ok, Im not afraid anymore."  We have already seen so much development in him and progress as far as gaining independence and coming out of his shyness.  Maybe part of it is his getting older but we think that his meetings with Jenny are really helping him.

After his "play date" with Jenny, we had an appointment at the clinic mainly for a blood draw to check his counts.  We were so excited to find out that the Nuprogen did its thing and his counts were back up higher than they have been in a long time!!!  His ANC is 8000 and his white blood counts are 12000...great news for us and Alex and no more Nuprogen shots (hopefully for good)!  We got to talk with our Oncologist for a good amount of time while Alex went to the art area and played with Gretchen the art therapist and a few other kids.  We feel much better after having spoken with our Oncologist and the "plan" again.  We got a lot of our questions answered and think we are going to wait on meeting with Dr. Dome, the specialist in DC until after Alex' final scans.  Dr. Dean, our Oncologist, let us know that at the last Tumor Board meeting, they presented Alex' case to Dr. Dome and he was happy with the progress he has made.  He is willing to meet with us but Dr. Dean suggested we wait until the last scans and before the surgery (if needed).  We feel comfortable with that and will just keep pushing along until then.

While we all have loved the snow I think we are ready for warmer weather to kick in.  The snow is finally starting to melt and we can see portions of our deck and some spots of grass out front.  We have been creative with our indoor play but are running out of ideas and are definitely ready to get outside to play more! 

I have added a new page to the site: Events / Fundraisers.  While there is nothing listed as of yet we know there are a few events and fundraisers being planned for the Spring.

Thank you as always for checking in.  Thank you for your warm wishes and prayers!  With Love Always - The Green Family

Friday, 2/11/10:  I am always kind of surprised when I login and realize how long its been since our last update.  Things have been going pretty well...we are getting used to (I guess) the ups and downs that this illness brings.  Alex had an echocardiogram last Friday to prepare for his chemo this past Tuesday.  He got Vinicristine and Doxorubicin on Tuesday, the echocardiogram is done before getting the Doxorubicin because of the effect that medicine can have on the heart.  As far as we know the echocardiogram went well, we have not seen the results but when meeting with one of the Oncologists Tuesday, she did not mention anything wrong with that.  Alex' counts again on Tuesday were low, his ANC was 780 and his white blood cells were low again as well.  Because of this Alex only got 1/2 of the Doxorubicin dose and has started a new medicine called Nuprogen which unfortunately is an injection that he will get daily for the next week.  The Nuprogen is basically to help his body make new white blood cells.  It was pretty upsetting for all of us to have to do this but its just one more thing we have to do to get better!  There was this little girl sitting across the art table from Alex when he was getting his chemo Tuesday and she asked her Dad who was with her if Alex was getting his "power".  Gretchen the art teacher told Alex that she calls her medicine her power, Alex (being totally into all the superheros, ninja turtles, etc) thought that was pretty cool.
Alex met a new friend at the clinic on Tuesday, his name is Riley.  He is 6 (almost 7) and was just diagnosed in November of last year.  The boys got to hang out in the "teen room" at the clinic and play Xbox.  They played Lego Indiana Jones for awhile and when they had killed all the bad guys and werent quite sure what they were supposed to do, Riley chased Alex who was Indiana Jones, around on a camel which got quite a few deep belly laughs out of the two boys.  It was nice to see the boys laughing and having fun...its also nice for Alex to meet some friends at the clinic as he is realizing everyone there is like him and he isnt alone in this.
We did have to make another trip to the hospital Wednesday (yes amongst all this crazy snow) because Alex woke up with a fever.  All the cultures taken showed no sign of flu or infection so we were not admitted.  Alex was actually wanting to stay overnight in the hospital - his reasoning: the hospital has Wii, the hotel does not:).  As we were leaving the hospital we ran into Riley's mom.  Riley was admitted for his fever soon after we had left Childrens on Tuesday.  It would of been fun for the boys to get to stay in the hospital together but Im sure we'll get to see them again at the clinic.  We spent the night in a hotel since we had to go back to the hospital Thursday for a follow-up.  Alex thought the hotel was pretty cool, we ate dinner in the lobby, Daddy went out and got some snacks (combos, baby carrots, and Dibs ice cream!).  We watched some cool shows in bed while we ate our ice cream then went to sleep. 

Alex' fever went down and his counts were back up a little since.  He is doing well, he actually got to have a sleep over last night with his cousin Eddie and he is looking forward to a visit from his Grandma and Poppop, Missy and Tyler who are my little brother and sister.  It should be a fun weekend and hopefully will be a nice break from being snowed in!!!

Alex will have an appointment on Wednesday to check his blood counts and to see if he will have to continue the Nuprogen or not.  In a few more weeks he will get more scans at which point we are going to be meeting with Dr. Dome, the Wilms' specialist located in DC.

Other big news...Alex' application for his "WISH" has been approved so we are VERY EXCITED to meet with the local wish volunteers in a few weeks.  We told Alex that there are very special people out there who will be able to make 1 wish of his come true and needless to say he was VERY excited!!!  He has no idea what to wish for so we welcome any suggestions or ideas anyone has:)  He has mentioned being Spiderman for a day or being a Ninja Turtle for a day - both very creative ideas I think:).  I am excited to see the process and what his ultimate wish will be!

Thank you to everyone for continueing to write notes to Alex and our family.  We really do like and look forward to reading them!  With Love Always - The Green Family


Thursday, 1/28/10:  This week is definitely going better than last.  Derek and I went to our first "Parents Night" at the Life with Cancer facility.  It was a good experience for us, we were overwhelmed by representatives from at least 12 different organizations out there to support families like ours dealing with pediatric cancer.  To name a few:

*HopeCam out of Reston, VA provides web cameras to help link cancer patients and keep them connected to their friends and class;
*Trevors Treasures - started by a little boy named Trevor Blake who wanted to provide other kids with cancer with toys and fun things to do while in the Hospital (a link to his site has been added to our Donate section)
*Make a Wish foundation
*DC Candlelighters
*Believe in Tomorrow

We have already applied for Alex to become a Wish Kid, something that he is not aware of yet so it'll be our secret:)  And we are thinking about setting up a HopeCam to help him stay connected with Kindergarten and hopefully make his reentry into school next year a little easier. 

Alex had an appt with Jenny (the Life w/Cancer child therapist) on Wednesday morning, something he was really looking forward to, and from what I understand they made some progress and she really thinks this will help him open up a little more and have a better understanding of what he's going through.

After his playdate with Jenny, he did have an appt to check his blood counts at the Clinic.  We were pleasantly surprised that his counts had continued to go up making his ANC 2000!  We are thinking about celebrating with a trip to Wegmans for pizza tomorrow night:)  Because his counts are ok, we again have a week off next week from appointments!  Alex will meet with Jenny Monday morning, but other than that he gets a break from the clinic.  Alex is excited for Valentines Day and hopefully as long as everyone stays well, we will be able to start seeing more family and friends.  Derek and I have been so careful with not exposing Alex to germs, we are starting to feel that maybe we are overdoing it.  Alex spends a lot of time at home and is really missing his cousins and friends.  At the Parent Night, there were a lot of kids there who also have cancer but were there with there siblings.  They got to do special activities and played games, we didnt take Alex because Jacob is too young and Alex said he wouldnt want to go by himself.  That said, we talked to our oncologist and she thought as long as we are careful, he can go out more and have friends over, etc. 

We are hoping to have an appointment with Dr. Jeffrey Dome located at Childrens National in DC.  He is a Wilms specialist who works with our group of doctors but we have not met him.  Because of Alex' staging and while we are overrall happy with our doctors, we feel its important to meet with him to see what he has to say.  Derek talked with our doctor about it this past Wednesday and she said that we certainly could meet with him if we wanted.

So with all that said, we are doing well, staying positive and just spending as much time as possible with our two little guys.

Thank you for listening, for your prayers and support.  With Love Always - The Green Family

Friday, 1/22/10:  So Im really not sure how to begin tonight...I wish I could say that we got the news we were expecting on Wednesday, but maybe our hopes were too high this time.  The CTscan and Ultrasound went well on Monday.  Derek took Alex and while he was a little upset about the CTscan, understandable because it probably reminded him of the radiation treatments a little bit, but he did do great with the Ultrasound and was very patient.  Our appointment Wednesday wasnt what we were hoping for but we are trying to keep positive.  There really wasnt much change in his lungs from the radiation.  Our Oncologist seemed happy that there wasnt any growth, but we didnt even think that was really a concern.  We just thought the radiation was going to pretty much take care of everything...and maybe it has.  I guess the CTscan cannot differentiate between the cancer cells and scarring caused by radiation.  So...the marks in his lungs could be cancer cells, it could be scarring, or it could be a combination of both.  We are staying positive because our little man has done so well so far and he will continue to do so.  Perhaps things were just going along so well we just figured we would be done with this whole thing sooner rather than later.  I am telling myself that this is a long process and we just have to have patience and faith.  Its very hard and it has been a tough week, but then I think of Alex and how hard this is on him and I think to myself, if he can do it so can you!  Our plan is mainly now to just wait...the waiting definitely is torturous but I will wait as long as it takes to get my little boy better!  We will continue the every 3 week Chemo, he had a double dose on Wednesday, and then in another 6 weeks we get CTscans and Ultrasounds to see what progress we have made.  After that we again continue the every 3 weeks of Chemo, then in 6 weeks again more CTscans and Ultrasounds.  That will put us at 12 weeks from now at which point we will see whats next.  If the nodules are still showing up in his chest, he will have some sort of surgery so that they can pull samples of whats in his lungs to find out if its scarring or cancer.  If its cancer, we then will begin a new Chemo regimen.  If its scarring, than I think we are done at that point...

Alex has been doing great, we had to make a little trip to the hospital yesterday evening because he had a fever.  Since his blood counts (ANC) on Wed. were low again they wanted us to go to the ER to see what was causing the fever.  While the trip to the hospital was not on Alex' list of fun things to do that night...he did pretty well considering.  Luckily, they couldnt find any sign of infection and the counts they took at the hospital showed that they were back up and we didnt have to spend the night.  We had a follow up appt this afternoon at the clinic and they said as long as he didnt get another fever than we didnt have to go back until Wed. next week. 

We have a few appts next week...Tuesday morning we will meet with the Radiation Oncologist as a follow up and we are hoping to have more questions answered as to why there wasnt much change and if they are happy with those results or if they were expecting different results as we were?  Wednesday Alex will meet with Jenny at Life With Cancer for an hour to play and then we will go to the clinic to check his counts.  Since he had a double dose of chemo this week, we think his counts might start to lower again next week.  The up and down battles!!!

Alex has been doing wonderfully with his schoolwork, I understand from his teacher that he excelled in the testing he did this week and next week he will get his FIRST report card:)!!!  How exciting!  It will definitely be something to frame...he is such a bright boy and is really starting to read pretty well! 

Emotionally he is doing better in communicating with us how he feels about everything.  He is not necessarily self conscious about his hair but he doesnt like it when he looks in the mirror...he is getting more used to the scars and he knows that those will fade with time.  Emotionally Derek and I are just hanging on...we are going to go to our first Parents Night on Tuesday night next week to find out about the various programs that are out there to help us all.  There really is so much support out there, its really just a matter I guess of whether we are ready to accept it...its hard to explain but you feel kind of isolated and alone despite the number of people out there going through the same thing and the number of people who are willing to help.  I pray everyday that this cancer will just go away...its hard not to think about things like "Why Alex?", "How did this happen?"  All of the things they tell you NOT to think about in the beginning because there are no answers are now running through my head all the time.  In the beginning we were so busy with just keeping up with all the surgeries and meeting different doctors, we didnt really have time to think about it.  Now that we have so much time in between appts, which is great, it does give us more time to think. 

Last week I saw another young set of parents getting a tour through the clinic.  Walking beside them was the cutest little blond haired girl...probably about 2 or 3.  The mother looked so scared and upset, she was crying as she got to the end of the room and I just felt so bad for them.  I remember how Derek and I were sitting in the waiting room with Alex for our first time at the clinic, while Alex had a full head of hair and we felt that same way, just a mess.  At the time all of the other parents seemed ok and I wondered if we would ever get to that point or if Alex would ever get to the point when he gets used to everything.  I asked Alex the other night if he remembered when Skyler and him were playing "Dont Break the Ice" and Skyler lifted up his shirt to show Alex that he had a port too...Alex did remember that and said that it made him feel better. 

As a parent you are so helpless, all you can do is watch and make sure the doctors are doing everything they can to make our baby all better.  My heart breaks everyday 1000 times...but then Alex gives me a hug or a kiss on the cheek and says, "I really love you Mommy" and I cant help but smile and feel that happiness again.  Alex has always been a sweet boy and nothing will ever take that away from him.

We will keep you posted on any new news from the Radiation Oncologist and on Alex' progress.  Thank you for listening as always:).  With Love - The Green Family


Saturday, 1/9/10:  I have to apologize for not updating the site sooner.  We had a great New Years' Eve...Alex did stay up all the way until Midnight!!!  We couldn't believe it, I actually had to have some coffee at about 9 to help me stay awake, but kept busy by playing cards, watching iCarly (one of his favorite shows), and by breaking out all our glow sticks.  The last 10 minutes before the ball was to drop, Alex laid down on the couch and started closing his eyes.  We made sure he stayed up at that point because how funny would it have been for him to fall asleep 10 minutes before the New Year???  We watched the ball drop together, just Daddy, Alex, and I, and when it dropped after a few kisses Alex said, "Is that IT?"  I guess for a 5 year old it just isnt as exciting! 

We had a good week, with the help of an assortment of relatives, Derek and I were able to put in a full week at work pretty much.  Alex and Daddy went to the appointment on Monday, they had thought his blood counts might be low so we were expecting to have to do a transfusion on Tuesday.  They got good news that his red blood cells were higher so he didnt need a transfusion, however, his platelets were low.  We had another appt. Friday to check his counts prior to the weekend because they thought he would probably need platelets.  Good news again, all of his counts were higher and he is no longer Neutropenic!!!  While his counts are still not that great, at least for now we are out of the Neutropenic stage!  To celebrate, we went to Wegmans for pizza last night with his Aunt Heather and PopPop which Alex was THRILLED about!  Its funny but Wegmans had become his favorite place for pizza since he can sit upstairs and watch people shop below...we hadnt been there in months so Alex was very excited to get out of the house and get pizza of all things!  On Friday nights they have Family movie nights and though this time we werent able to join in, Alex was just as happy to sit at our own table and watch the shoppers below.

More good news from his Friday appointment, because his counts were good and he seems to be doing well....NO APPTS NEXT WEEK!!!  We havent told Alex because of course you never know what could happen, but this was very exciting news!  Derek and I are hopeful that we are maybe in the clear with the Neutropenic stage since radiaiton is finished and we have moved to an every 3 week chemo schedule.  We are basically now just waiting for the CTscans and ultrasound on the 18th (which cant come soon enough) to see whats next.  We are hopeful that his lungs will be clear and pray every day that he wont have to undergo any further surgeries unless its to remove his port!!!  While the CTscan is on the 18th our appt with the Oncologist will be on the 20th so that is the day we will have more to report.

Wednesday this week Alex will meet with the Life with Cancer child psychiatrist again which he seemed to enjoy the first visit.  We think this will help with some of the anxiety and help him find ways to talk and learn about this whole experience.  He continues to do well with the school at home, he is learning to read pretty well and has done outstanding with math!!!  Its so great to see the progress he has made with that and he seems excited about finally being able to read some books at home, street signs, etc.  

I apologize again for not updating the site sooner.  Thank you for listening and for your constant support!  With Love - The Green Family

Thursday, 12/31/09:  What a relaxing morning...no appts today!!!  Alex had his 10th dose of chemo yesterday and all went well.  He got another double dose (doxarubicin and vinicristine) so while his counts had gone up slightly, the doctor expects them to lower again.  That said, we dont have to go back again until Monday for blood draws.  He possibly will need another transfusion next week but we'll just have to wait and see how everything goes.  Alex is doing well, we have been playing this morning, Jacob and him have been wrestling and throwing the football (yes in the house!) and just having a good time at home!

Alex is excited about tonight because we told him that he can try to stay up.  I fully expect him to fall asleep on the couch but we'll see.  The art therapist gave him glow sticks yesterday to use tonight so we could be having quite a party tonight! 

Thank you all very much for listening each week and keeping our family in your hearts during this crazy time in our lives.  We have met so many wonderful caring people through this guestbook and genuinely appreciate all the support.  We wish everyone and Happy and Safe New Year and are hopeful that 2010 will be a good year for all!!!
With Love Always - The Green Family

Tuesday, 12/29/09:  Today was an awesome day - we had our last radiation treatment this morning and what an emotional/happy morning it was!  The nurses set up a table for Alex right by the bed where he wakes up, the table had a red tablecloth, a hugh Congratulations banner, a box of donut holes, a jug of chocolate milk and applejuice, 2 star shaped balloons, spiderman napkins, and 3 presents for Alex to open!  Alex was so excited - actually when he first opened his eyes he asked me if I was proud of him...of course I replied that I am ALWAYS proud of him but today we are especially proud.  He made it through his 14 treatments and sure enough by this last one he went to sleep without crying!

We had a wonderful Christmas, it was VERY relaxing to have 3 days off and to be able to spend it outside of the hospital.  We felt blessed this year especially just to be able to be home with one another.  Though it did make us think about all those children and families who were not able to be home for the holidays.

We have been having to test Alex' blood twice a week now and just yesterday found out that his counts are really low and he is now considered Neutropenic.  With his white blood cell counts so low it is now more important than ever to try to keep him healthy so that hopefully we can avoid future hospital stays.  We have our 10th chemo appt tomorrow and they will test his blood again at the clinic.  Since we cannot transfuse white blood cells, it is something that should get better as his body makes more...I believe this will improve now that we are done radiation (well should start improving in a few weeks since the radiation continues to work after the last treatment), and now that we are going to be doing chemo every 3 weeks.  While we will still have to go to the clinic 2x a week for blood draws, Alex is very excited to be able to eat once again when he wakes up and not have to go to the doctors so often! 

I am feeling pretty good lately because I think since the surgery is behind us now and the radiation is finished, I feel that we have gotten most of the tough things behind us...now we just wait for the CTscans and see what we have left to deal with.  We have our CTscans scheduled for Jan. 18th, a few weeks from now.  Until then we will continue the clinic visits and try to keep our brave strong little guy as healthy as can be.

We hope everyone had a wonderful Christmas!  With love always - The Green Family

Thursday, 12/24/09:  First we should say Merry Christmas Eve:)!  The boys were very excited this morning knowing that tonight was the big night! 

Alex had his 9th dose of Chemo yesterday and pretty much everything went well.  We did find out kind of what we expected that his counts are low and he will need a blood transfusion which we will go back to the clinic today to get.  The good news is that the transfusion will bring his counts back up (at least for about 1-2 weeks) and he should be feeling well for Christmas!  We have to be extra cautious though about visitors and going anywhere because he is now more susceptable to getting sick.

We were excited to find out though that after his 10th week of chemo, he will also start only needing treatments every 3 weeks instead of weekly.  This was awesome news as since also after 10 weeks he is through the radiation treatments and his counts should start being able to normalize a little bit.

We hope that everyone has a VERY Merry Christmas!  We are so thankful to be able to be home tomorrow and I know Alex is looking forward to our little break!

With Love Always - The Green Family 

Monday, 12/21/09:  Wow - has it already been a week since our last update???  Time is flying by...I cannot believe we have only 4 days left until Christmas!  Alex' radiation treatments have been going well, they have been going by really fast which is good for all of us - especially Alex.  We had a small half-way celebration last Friday which was fun, Alex got to play with his cousins Eddie and Jack whom he hadnt gotten to see in awhile.  We had another weekend of not talking about appointments which is a great break for Alex.  The snow storm on Saturday seemed to go on and on!  We watched the snow pile up on our deck and along the sliding glass door...it came to about Jacobs chest!  While they were VERY anxious to get out and play Saturday it was just too windy and cold so we waited until Sunday.  Alex and Jacob had fun climbing the HUGE mounds that were plowed right in front of our home, and we even got to sled a little bit.  We didnt stay out too long because we didnt want Alex getting too cold, but the time outside seemed to be just enough for both of them.

Alex' chemo appt (#8) last Wednesday (12/16) went well.  His blood counts were slightly lower but nothing they were concerned about.  We are starting to take his counts 2 times a week just to keep a closer eye, with the Radiation and Chemo there is concern that he will at some point become Neutropenic.  We found out that around week 10 they will do some more CT Scans to see Alex' progress and kind of re-evaluate him.  Week 10 of Chemo is also when we will finish up the radiation (next Tuesday is the last day HOORAY of radiation -12/29/09).  The Radiation Oncologist mentioned they would do CT Scans 2 weeks after the end of the radiation so we're not exactly sure yet how that will work out if they will wait until week 12 or just repeat the scans...we'll try to ask that at this weeks appt.  He will have his 9th dose of Chemo this Wednesday but again it will just be the one dose of Vinicristine.

The boys are, as you can imagine, super excited for Santa's arrival!  I have been trying to get out thank you notes but it is so hard to keep up!  Derek and I would just like to thank everyone, there are so many people who have been there for us and continue to be there for us during this difficult time.  We have been able to focus on Alex and our family even more than ever before.  We have been so blessed to have so many friends, family, coworkers, and even people whom we have never met make dinners, go shopping, babysit, donate, the list really goes on and on and we could never say thank you enough.  When something like this happens, you really have no idea what you need or what people can do, and thinking of even the simple things like planning dinner seems so much more difficult!  We have been exhausted lately, maybe with the holidays, or all the radiation appts every day, but not having to worry about those little things have made such a difference.  Thank you so much for listening and praying for our son.  He has made such progress over the last few months and we feel so blessed to have so many people praying for him and our family.  With Love Always - The Green Family

Monday, 12/14/09:  We made it through our first few days of radiation last week and started our first full week of radiation this morning.  Alex did as well as can be expected I think for him.  He doesnt like going to sleep but it really is the best option for him in order for him to hold as still as they need him to be during the treatment.  This will be a long week but I think once we get through the next 5 days, next week is a short week with the holiday and then we'll only have a few more to go after that.

We had a fun weekend - Alex asked on Friday on the way home from the hospital if we could not talk about doctors or the hospital anymore so we made it a rule for the weekend to not talk about it at all.  It seemed to help him be able to relax and just have fun this weekend without worrying about the next appt, etc.  Sunday night was especially fun because the Redskins won, and since Daddy is a Raiders fan (nobody has yet to figure out why exactly), Alex had fun teasing Derek with each touchdown the Redskins made!

Thursday, 12/10/09:  Well, we have 1 down and 2 more to go this week...yesterday Alex had his first radiation treatment in the morning and resumed his chemo in the afternoon.  The radiation went well, although we had kind of a change in plans.  The Radiologist reviewed Alex' case further and wanted to make sure the radiation plan for his stage Wilms' was the one he needed to do for Alex' case.  After reviewing further and speaking with a few people around the country that he knows who are high up there in studying/researching Wilms' cases, he found there is new research I guess that shows because of the amount of lymphnodes in Alex' abdomen that did have cancer cells, they would need to do higher doses and add 6 more days of treatment.  While this was a little upsetting news, only because we were so happy about having only 8 days treatment, really we are back to what we originally were planning on having - the 3 weeks.  That said, because of the higher dose (around 20 gray), they are expecting him to need a few blood transfusions. 

Yesterday for the first time we got to see pictures of the Catscan they took of Alex' abdomen and lungs at diagnosis and also the one taken right before surgery.  Now I know why the doctors seem so surprised he didnt show more symptoms.  The tumor pretty much took up 1/3 of his belly...it was pushing all of the other organs over.  The size of his normal kidney was so small (maybe 1/8th of what his other kidney appeared to be)!!!  The good news is that the Catscan taken right before the surgery showed the tumor almost the same size as his normal kidney!!!  The spots in his lungs were pretty big and there were lots of them, but the Catscan before his surgery showed like 4 nodules but they werent too big.  It was good and bad to see the pictures, it was good to see how much progress we have made, but its also a little scary to see just how far along it was.  I am so thankful we caught it when we did but question how come we didnt see it sooner?  Looking back it seems so obvious, but when your going about day to day activities and Alex was always acting so normal (running, swimming, playing tball), we would have never expected that he had anything wrong, let alone a 13 cm tumor in his belly!

Alex has been complaining of abdominal pain last night and this morning but that can be probably from the chemo yesterday.  He is hanging in there - he has a chart that they made for him that he puts stickers on when he is done each treatment, Im sure he wont be happy when we add a few days on it, but everyday we go that one less we still have to do!!!  These next three weeks are going to be tough but I think when we are through these few weeks we will be close to almost our halfway point!!!  With Love - The Green Family

Monday, 12/7/09:  Alex will begin his radiation treatments this Wednesday morning.  He will also resume the Chemo treatments on Wednesday afternoon.  He will start off this 7th round of Chemo with a double dose and will now continue weekly again as we were doing before his surgery.  We are anxious to talk to our Oncologist about the outcome of the surgery and the testing they did on the tumor and on the surrounding lymphnodes (to confirm what we heard from the Radiologist).  We are also hoping to be able to view the original CTscan to the one that was taken the day before the surgery just to see the progress that the Chemo is making. 

He will have 3 radiation treatments in a row this week, then everyday next week for his 8 total treatments.  He wasnt able to lay as still as they would like in our practice appt. so he will have to have "sleepy medicine" everyday.  He doesnt like going to sleep but we think this really is the best option for him because he is so anxious and because it is so important for the radiation treatments to be precise on the spots they need to hit.  We know these next 2 weeks are going to be the toughest for Alex and for us...not necessarily because they are any more difficult than what we have been doing so far...but just because having appts. everyday and having Alex be put to sleep everyday is going to be hard.  We are very much looking forward to get through these treatments and on to Christmas!!!  Love Always - The Green Family

Wednesday, 12/2/09:   So we received some more good news yesterday from our consultation visit with the Radiologist.  Alex will only have 1 1/2 weeks (8 days total) of radiation treatments.  We think that our Oncologist was just estimating or maybe given us a worst case scenerio because the Radiologist seemed surprised that we thought he would need 3 weeks.  The radiation they use for children is a much lower dose than that which is used to treat adults...which means that his side effects shouldnt be too bad.  Obviously there are late term side effects that he could have but those didnt sound too bad either given the whole situation!  We really liked the Radiologist, Dr. Bajaj, he was so good with Alex, Alex even gave him a hug when we were leaving!  I dont know if it was because he really liked him too or maybe he was just so happy that we didnt have to do anything but talk yesterday, either way it was a first for him and Derek and I were pretty surprised since Alex is usually such a shy kid.  We have a trial run this afternoon where they will make a body mold to help keep Alex still during his treatments.  Alex is scared because this will be the first time that Derek and I are not allowed to stay with him for his "pictures".  We are hoping that he will be able to get used to it with some practice today so that we dont have to use anesthesia everyday during the radiation treatments.  They will radiate quite a large portion of his abdomen (from a little to the left of his belly button to his right side) and his entire chest, but because his left kidney is kind of large, it will be very important to avoid that area.  We are nervous because keeping a 5 year old still is hard enough as it is so this will be quite a test...that said, Alex has surprised us with a few things in this whole experience so we're hoping he will surprise us once again!  I feel that it is hard to get excited about anything just because the whole thing is just so scary.  We do feel though that we have gotten so much good news lately and can only pray that this continues.  Alex is doing well...he just yesterday started eating more which is good because while the scale doesnt show that he's lost too much weight, you can definitely see it in his face and body.  His taste buds are definitely changing because he is starting to not like foods that he always has...the other day he told me that he didnt like Chicken Nuggets or French Fries!  He seems to have a sweet tooth lately and has been eating candy canes, ice cream, oreos, etc.   I have been able to make brownies that have Ensure pudding in them which adds a lot of nutrients that he needs and he hasnt suspected anything yet! Hopefully we can put some pounds back on him now that his surgery is out of the way!  Thank you for your love and support - The Green Family

Sunday, 11/29/09:  WE ARE HOME!!!  We actually had a wonderful surprise late yesterday when the surgeon came and told us we could go home last night...we really werent expecting to get home until today so it was great news and a good night last night!  Alex slept so good in his own bed - he actually slept in until almost 0900 which is really late for him (it was a nice treat for mom and dad).  He woke up a little sore but thats to be expected for a little while.  Right now we are just waiting for Daddy to go and get little brother Jacob who Alex is especially anxious to see!  We are going to put up our Christmas tree and our lights today to celebrate!  Alex has his next Chemo appt. scheduled for this upcoming Friday, we also will have an appt sometime this week with the Radiologist which Alex will start as early as Friday as well.  I know I didnt write yesterday but it was kind of fun in the hospital on Saturday because we saw our friend Skyler.  He was in for a high temperature and low blood count but overall he was feeling well.  The Hem/Onc floor had a "lap contest" with a chart for the kids who were able to do laps around the floor to compete against each other.  Skyler quickly put 6 laps on the board so he could get a prize and then he went back to his room.  There was another little boy who then slowly worked his way up to 10 laps.  Skyler must have seen him walking from his room because next thing we know Skyler was back out of his room and practically running the laps.  We had our door open and both boys would wave to Alex as they passed by...Alex himself did 2 laps which for him was excellent given the surgery he just had.  We were and are VERY proud of him for everything he has been through and has done!  Thank you as always to everyone for the love and prayers.  We have felt so much support during this crazy time and its hard to really explain how much that is helping us get through this.  We have added some new pictures to the photo album and we will be adding a new page showing some cool events/get togethers people have had in Alex' honor.  With Love Always - The Green Family

Friday, 11/27/09:  Alex has had a pretty good day today - he continues to reach the milestones that he needs to in order for him to have a great recovery and for us to be able to go home.  We just were able to remove one of his last tubes, the nose tube (or as we kind of described to Alex as a long booger).  He was very afraid that it was going to be painful.  Derek and I along with Holly kept trying to reassure him that it wouldnt hurt, but that it just might feel weird.  When it was all done, we asked him what Holly should tell other kids, should she tell them it hurts, or should she tell them it just feels weird.  He was so cute when he told her that she could tell them it just feels weird.  One of the first questions he asked was if he could eat...I hope that he never has to have another Thanksgiving holiday were he is not allowed to eat!!!  Our nurse went to go get some jello while Alex achieved his next big accomplishment which was sitting on the edge of his bed and then standing for about a minute.  This milestone was a little painful for him but we were so proud of him once he did it and it was over!  Holly made him a sticker chart so that he has motivation to sit up, stand, and walk.  She even got him Spongebob stickers for him to mark his chart and he will get prizes the more he fills up his chart.  He is finally talking a little more and after he just finished eating some red jello, he said, "I really like jello!"  Its funny how much more you appreciate food when it is taken away from you for awhile!  Alex is getting ready to work on his second cup of jello, this time yellow, and hopefully by tomorrow morning he'll be able to have some more solid foods.  Happy belated Thanksgiving to all!  Love - The Green Family

Wednesday, 11/25/09:  The surgery yesterday went as good as could be expected although it definitely turned out to be a very long day!  We got to the hospital at 0800 for our ultrasound and then the surgery which originally was to be at 1000 was pushed back until 2 PM because there were a few emergency pediatric patients that the surgeon needed to help first.  Alex did well while we waited and his only real big complaint was that he was hungry and he wanted Pizza!  We found out that the CT scan Alex had on Monday showed that the Chemo is working extremely well.  The lungs which were pretty covered with small spots and 1 fairly large spot now were mostly clear with the exception of the large spot which it too had shrinking in size.  The tumor in Alex' kidney was at least down half to maybe even down 2/3 of its original size!  All of this news was extremely good news for us!

The surgery lasted a little over 3 hours which was what we were told to expect by our surgeon.  The right kidney and ureter along with the tumor were successfully removed without hurting/touching any other organs and the left kidney was found to be perfectly healthy.  There had also been a clot along the IVC which was also successfully removed.  Alex did have some bleeding which we were told in advance was a possibility and since he was anemic to begin with they went ahead and did a blood transfusion which have improved his blood counts overrall.  We had a fairly good night last night.  We got to our room about 8 PM and Alex has been resting pretty well with little pain with the help of the pain meds.  We are taking it easy today, watching "Phineas and Ferb", "Beethoven", and now are waiting for Holly, our Child Life Services friend, to bring some games for him to play on the hospital gamecube that they brought to his room.  We had a visit from Liz, the hospital teacher, who brought us some cute new books that were recently donated to the hospital from Borders.  Derek and I are doing well and I think while we are nervous still about the steps to come we are a little relieved.  We were so relieved yesterday obviously when the surgeon came out to tell us with thumbs up that Alex did so well!  We feel that a big part of our battle has been removed and now we can go on to focus on getting the rest of these "bad germs" (as we tell Alex) to go away.  We had a visit from one of our Oncologists this morning who said that we will hopefully be able to come home in about 4-5 days as long as Alex can do a few things on his own.  He also said that we will plan on starting radiation treatments in about 10-14 days so that will be our focus now...getting through this hospital visit and through the radiation treatments.  Alex will have radiation 5 days a week for 3 weeks.  During this time he will continue his normal Chemo schedule as well. 

Alex has fallen asleep again and Derek and I are apparently now watching "Hannah Montannah" on Disney...we'll probably just try to get some rest too!  Thank you for everyones thoughts and prayers yesterday...it was a tough day for everyone but we so much felt the love and support given to our family.  We will update the site as we get any other information.  With Love - The Green Family

Tuesday, 11/24/2009:  Alex had his surgery this afternoon around 2:00 PM and the surgery went really well.  They were able to remove the cancerous kidney and lymph nodes.   He had to have a blood transfusion during the surgery, but he is doing well and recovering now.   There was only a small spot on the lungs and they'll address that in future treatments.  Thank you for all the thoughts and prayers.


Monday, 11/23/09:  After quite some time spent at the hospital today we finally were done the pictures and were on our way home.  We found out that Alex will have his surgery tomorrow morning to remove both the tumor and his kidney.  They will also possibly remove any lymphnodes in the area and do some exploratory surgery on the other kidney just to confirm it is healthy.  We are thinking we will be in the hospital for about a week but are hopeful that maybe it wont be that long.  I don't think Alex will be allowed any visitors during that timeframe but we appreciate everyone keeping him in their thoughts and prayers.  Love - The Green Family

Sunday, 11/22/09:  So we have had a little change of plans from the update on Friday.  We got a call from one of the Oncologists saying that Alex would have his CT scan tomorrow morning but that if it is determined that the tumor is ready to be removed, than they will do the surgery Tuesday of this week.  We think this is a very positive sign that things are going well and the chemo is working quickly.  We will provide an update tomorrow afternoon/evening once we find out what the plan is.  We will probably be in the hospital for about a week, or at least are preparing ourselves for that.  We had a fun weekend with the weather being so nice...yesterday we took the boys to Gramma and PopPops to play and ride the 4 wheelers and today Daddy took Alex to the driving range (which Alex was totally excited about!) and in the afternoon we went to the Park and threw sticks in the creek.  We took some pictures and I finally got a good one of the missing tooth!!!  Will try to post them later tonight.   Love - The Green Family

Friday, 11/20/09:  We are soooo proud of Alex, well we are always proud of our boys but yesterday we were extra proud:)...yesterday he did amazing at his appointment.  On the way to the doctors appointment for our 6th round of chemo, Alex said, "Lets just get there and get it over with."  I was very impressed and told him, "Thats a good attitude to have, Alex.  Lets just get it over with!"  He also told me that he wasnt going to cry.  I suggested maybe just laying into Mommy and closing our eyes for it and maybe that would help...but he told me no, he just wanted to try his own thing.  When the nurse came into the room Alex got a little upset but I almost cried myself when he leaned into me and didnt cry a tear until the whole thing was over!!!  I guess our little guy, like most of the other little guys and girls there, is getting used to the process, and while he doesnt like it, he knows that it is something we have to do to get better.

We found out yesterday that we will have a CT scan done Monday, 11/23/09.  They will be looking to see if the tumor is ready to be removed or not.  We probably won't know Monday, maybe not even Tuesday, just because they will have the Oncologists and the Surgeons looking at a number of things before they make a decision.  Alex is scheduled for his 7th round of Chemo for Wednesday, 11/25/09, for which we are thankful we won't be having it on Thanksgiving day!  If it is decided that he is ready for surgery then it will most likely be the week after Thanksgiving.  We will be sure to update as we find out more information but that is what we know now.  When he has his surgery he will most likely be in the hospital for about a week.  If it is decided that the tumor is not ready to be removed, I believe we will wait another 3 rounds of chemo before doing another CT scan.

As far as everything else goes he is doing great so far.  He did unfortunately on Wednesday this past week get the flu that the rest of us had gotten but it was just a 24 hour thing and he is doing better as of yesterday with that.  His blood pressure has been pretty normal so the blood pressure medicine that they have him on seems to be the right dose.  The doctors have said that once his kidney is removed he shouldnt have anymore issues with high blood pressure.  His side pain is completely gone and he only gets some fatigue and stomach or leg pain periodically.  Other than that he is doing great and has amazed Derek and I through this process so far.

Thank you to all for your prayers for Alex and our family.  It has meant so much to us to be able to have so many people, from family and friends, to people we have never met help us through this experience.  Love always - The Green Family

Thursday, 11/12/09:  So we have some big news...Alex lost his first tooth yesterday!!!  He is loving putting his tongue in the missing tooth space and was very excited when the Tooth Fairy came last night!  He lucked out because the Tooth Fairy knew to come to his Grandma and Pop-pop Smoots house (Alex and Daddy stayed there last night because unfortunately little brother Jacob had the flu) and while she did leave him some money, she also left his tooth and a note saying that she can only take his tooth from home and to put his tooth under his pillow at home and she would come back tonight!  He currently has 3 other loose teeth, Im thinking this is because when he was a baby he seemed to get all of his teeth at once, so perhaps in the losing teeth process it will go pretty much the same.  We may be singing, "All I want for Christmas is my four front teeth" this year!  We will try to get a picture posted soon of the missing tooth!

Alex had his 5th chemo dose this morning.  His counts were slightly low but nothing to be concerned over per the Oncologist.  She said it is to be expected with last weeks doses and that overrall Alex is doing very well.  She pushed around on his tummy and said she couldn't even feel the tumor which is a good sign that the chemo is effectively treating the tumor.  We found out that he will actually have 2 more rounds of chemo before they do the catscan to see if the tumor is ready to remove.  It looks right now that the Friday after Thanksgiving is when we will have the catscan.  Depending on what the catscan shows will determine if Alex will have the surgery that week or wait 3 more weeks for more chemo.  Alex briefly saw his friend Skyler today but didnt get a chance to talk, the Childrens clinic was pretty busy and all of the seats were full with kids getting their treatments.  Alex' was short and sweet today as he was just getting the Vinicristine which is a "quick push".  He also proudly said that he didnt cry today which is really exciting...while its hard for me to imagine, perhaps toward the end of this whole experience, Alex will be reassuring other kids who are upset just as his buddy Skyler did to him last week.

Alex is doing well this afternoon, right now he's in the basement with Daddy and Jacob playing something fairly loud...not exactly sure what they are doing...but they sound like they are having fun!  He just finished up having schooltime with his new teacher Mrs. Lindsey and he seems to really like it!  Thank you to everyone as always for your warm thoughts and prayers.  Love Always - The Green Family

Friday, 11/6/09:  Alex had his 4th chemo dose yesterday and everything went as well as can be expected.  He met a new friend at the clinic named Skyler, he is a 6 year old boy who is amazingly outgoing and was of great help to Alex during our visit.  They played "Dont break the Ice", they played trains on the train table, and they played with clay with Gretchen the Art Teacher.  When the nurse came over to give Alex his anti-nausea medicine in his tube, Alex got a little upset.  Skyler came over to Alex and told him that it was ok and that it was just a little push and that it wouldnt hurt.  He then lifted up his shirt and told Alex, "See, I have one too!".  It was amazing to me to see another little boy not much older than Alex but so accustomed to the process.  His Grandfather told me that they had just as of Oct. 21st found out Skyler was "cancer-free".  He told me about their experience and how long Skyler had been living with cancer, I could mostly only listen as I still have trouble talking about Alex' diagnosis and our experiences so far but it was amazing to hear that this 6 year old little boy who had been through so much was finally cancer free.  Of course there is still more chemo to be done once the cancer is gone, but how I cannot wait for our day to come!  Alex is doing really well, we were worried since this week he got the Vinicristine and Dactomyacin (not sure of spellings), but so far he still has his appetite and no nausea.  Just some aches and pains but those are controllable with his pain medicine.  He gained 2 1/2 lbs since we left the hospital which was very exciting for us!  His blood counts look good and they think he is doing well so far.  He is finally starting to talk a little bit more about things and has started asking  a few questions.  We read this book given to us from a womens group in dc called Candlelighters, its about a little girl named Hannah who has cancer too.  It has lots of pictures and talks about procedures and things that Alex can identify with...we read it for the first time last night and I was so happy when Alex asked to read it again before bed tonight.  Jacob looks at the book too and it really helps when he asks questions or points at the tube in the book and says, "Whats that?"  Its good to hear Alex answer him and talk about it a little bit.  They are both in bed right now and are sleeping sound.  Derek and are I also doing better, although the hard time is definitely the quiet time when the boys are sleeping...Thank you as always for the letters, cards, and notes written, for all the support we have received and just for listening.  Thank you for your prayers - The Green Family

Tuesday, 11/03/09:    We have had a great week so far.  We had lots of fun trick or treating and got way too much candy!  As you can see below Alex was Bumblebee the Transformer and his lil brother Jacob wanted to be a blue truck, so thats the costume we made him:).  Tomorrow morning we are heading back to the hospital for some pictures to make sure that his heart is strong enough to continue with the double chemo dose on Thursday.  Right now Alex is doing so well, he has some leg and jaw pain occasionally and some belly ache but otherwise he is pretty much back to his normal self.  Being home has been so great for him and we are just hoping things to continue going this well.  He has just started to lose some hair but since he has such thick hair to start with, you can't really tell quite yet.  He knows about the hair loss and his first thing he said was, "People will say something."  Its amazing that at age 5 they already know/worry about things like that.  We are letting him know that its no big deal and that lots of people don't have hair...he smiled when I told him at least Mommy wont have to cut your hair for awhile (he has always hated getting haircuts!).  Enjoy the picture, we will be adding more soon!  Also, since Alex has been doing so well, we will be updating the site more like before/after his treatments which are weekly.  Thank you for your prayers - The Green Family


                        

Saturday, 10/31/2009:  So we have been home for a few days and everything has been going great so far.  Alex had his 3rd Chemo Thursday at the Children's clinic in Falls Church and it went pretty well.  He was anxious I think mainly because we had been in the hospital for 2 1/2 weeks and he didnt know what to expect - we had to keep reassuring him that we weren't spending the night!  They have cool fish tanks, flat screen tvs in all the exam rooms and a huge art room where the kids can play games or do arts/crafts.  There were only a few other kids there at the time we were there and I think it was good for Alex to see other kids, big and small, going through the same thing he is going through.  His blood counts are good and the Oncologist even gave us the go ahead for trick or treating tonight!!!  We have been going through all of the cards and gift boxes that have been sent and are touched by every one.  Thank you so so much for the thoughts and prayers!  Happy Halloween - The Green Family

Wednesday, 10/28/2009:  Good news this morning, we are going home!!!  Alex is walking around better and though his blood pressure is still higher than the doctors would like, we have a very low dose of blood pressure medicine in hand and get to go home this afternoon.  While it is a little bittersweet because tomorrow early morning we will be heading off to the Childrens Clinic for our 3rd dose of Chemo, hopefully this will be the beginning of a more outpatient routine!  With Love - The Green Family

Tuesday, 10/27/2009:  Today was a pretty good day for Alex...he made great strides in getting up and out of bed (a big accomplishment)!  Unfortunately, because his blood pressure has been high, we are going to stay in the hospital until it either lowers on its own or lowers with the help of blood pressure meds.  His spirits are pretty good and he is getting closer to back to his normal self.  He is smiling more - I got a big smile when I walked into the room this morning which was really nice!  He still doesnt like pretty much anything the nurses have to do...blood pressure readings, temperature, etc...but perhaps over time he'll get more used to it.  We might get to go home tomorrow since he has not had a fever since the 24th and since he was able to show the doctors he could get up and walk around...we just have to get some good blood pressure readings.  We have our 3rd round of Chemo Thursday, and after this one we hopefully will be halfway there to having the surgery to get the tumor and kidney removed.  We're watching "Firehouse Dog" tonight and are getting ready for bed.  Thank you for all your thoughts and prayers - The Green Family.

Monday, 10/26/2009:  Yesterday was another good day for Alex.  Alex spent the day with daddy.  We woke up and had some waffles while watching cartoons.  We spent most of the morning playing Mario Golf.  He was actually sitting up in a chair for 3 hours with no pain.  This is a first for him getting out of bed other than being carried to the bathroom.  This was after his pain medication was reduced by half.  I think he is ready to walk around a little bit, but he his afraid it will hurt.  He had no fevers, and it sounds like if the trend keeps going in this direction we will be able to go home very soon.  Thank you again to everyone for the support.

Saturday, 10/24/2009:  Today was a better day despite the rainy weather outside, Alex was in an overall pretty good mood.  He ate a whole waffle for breakfast and we busied up the day with coloring, doing some schoolwork given to us by the hospital teacher, watching Phineas and Ferb on t.v., watching US womens gymnastics (which he was pretty amazed by I must add), and playing the hospital Nintendo Gamecube (which Alex taught me how to play Mario Golf).  His side didnt seem to hurt as much today,  and while I still had to carry him to/from the bathroom, he wasnt in as much pain as he has been.  We are settling down now for bed with some Spongebob (uggghhh!) and hopefully his night will go well.  The nurse mentioned today that we may be moving back over to the other side of the Children's Oncology/Hemotology wing as Alex' has been over the flu now for a full week.  I think they are on the fence because of his spiked fever the past few nights (last night he had a fever of 103.0), and he still has a slight cough...so I guess we will just wait and see tomorrow what they decide (its not like we're going anywhere anytime soon!). Goodnight to all and thank you for your thoughts and prayers - The Green Family

Friday, 10/23/2009:  Thank you again to our cousin Steven for creating this website on Alex and our behalf.  We have updated the Alex's Story page to share with friends and family our story of how we got to where we are today.  We thank everyone so much for the wonderful prayers and comments.  While last night was the first time Derek and I have gotten to see the website for ourselves, we have been so overwhelmed today by the number of people who have taken time to write to Alex and our family.  We actually decided to show Alex the website today and read quite a few of the comments made...I think it was not only good for us but it was also very good for him to know so many people care about him and are thinking about him.  We will continue to read Alex your comments each day and appreciate you sending them to us.  Today was kind of a tough day; we are still in the hospital and know that we will be here until atleast Sunday if not longer.  Alex has spiked another fever this morning of 102.3 and has had a fever off and on throughout the day.  While we did get some good news after a chest xray was done that the plural fusion or the fluid that is in his right lung is getting a little better, although a portion of his lung is collapsed, he still is in a bit of pain from it and on pain medicines to help him cope.  He had his second dose of Chemo yesterday and seems to be doing ok other than some nausia and sickness today, they have controlled that with antinausia medicine.  His spirits are ok, he is getting a little frustrated (and I think rightfully so) but remains to be a tough little man.  We are both getting ready for bed and hope tomorrow will be a better day!
Thank you again for listening - The Green Family

Thursday, 10/22/2009:  Alex is still in the hospital.   He will stay there through his second dosage of chemotherapy today or tomorrow.


Tuesday, 10/20/2009:  Alex is still at Fairfax Hospital and will be staying there a couple of days.  He has some fluid around his lungs and he is on antibiotics.   The cause of this is unknown at the time... stay tuned.

Monday, 10/19/2009:  After being home for the weekend, Alex wasn't feeling well today and complained of some pain in his abdomen.   Mom and Dad took him back to the Fairfax Hospital after talking with the doctor on the phone.  As of 8:00 PM tonight we are waiting for the results of a CT-scan they just performed on Alex.  He is resting comfortably with his parents by his side at Fairfax Hospital.    Stay tuned for updates as we get them...  Please include Alex in your prayers tonight.












Monday,


Website Builder