April 14, 2012

Maybe I scared people yesterday.  I hope not.  I am the type of person who likes to know all the facts and so I try to give that as well.  Let me start by laying out the deciding factors for me and George:

3F8 Cons

• Far from home
• Increased travel costs
• Intense pain during 30 minute infusion.  (May last for 2 minutes or it may last for twenty)
• Mild pain for a few hours following infusion. (for some not all)
• Possibility of hives temporarily

Stem Cell Transplant Cons

• The world's leading neuroblastoma specialists are not convinced that the harvested cells are truly free of neuroblastoma which means the transplant could just be poisoning your child once again.
• Far from home
• Isolation; no visitors allowed
• Compromised immune system
• 30-100 day hospital stay
• Mucusitis
• Malnutrition 
• High risk for viral and bacterial infections
• Need for blood and platelet transfusions
• Excessive bleeding due to low platelets
• Possible lung conditions (DAH) due to pre-transplant chemotherapy (chemo during 7 days leading to transplant)
• Possible life threatening condition affecting the liver (VOD)
• Possible organ failure
• Increased risk of secondary cancers
• Higher risk of long term health complications
• Higher risk of relapse 

3F8 Pros

• Administered by the number one neuroblastoma specialists in the world.
• Potentially less time away from home and work.
• Each infusion is an outpatient hospital visit. (less time in hospital)
• Children are heavily medicated to ease discomfort.
• No compromised immune system.
• NO long term side effects reported since they started administering this therapy in 1989.

Stem Cell Pros

• closer to home

I hope that helps people understand why we made the decision we did.  We know we made the right decision and have a sense of peace we did not have before.  Memorial Sloan Kettering Cancer Center is number one for neuroblastoma in the world.  Not only are they concerned with treating the cancer, but they are also concerned with preserving every child's quality of life both now and in the future.  I could name two boys I read about that beat their neuroblastoma and either relapsed or developed a chemo induced leukemia and passed away because of the stem cell transplant.  We don't need that, so we are taking action now and are confident in our decision.

Here is our new team:

Dr. Cheung- The leading neuroblastoma specialist in the world.

Dr. Kushner- Pediatric Oncologist specializing in neuroblastoma

Dr. La Quaglia- Chief Pediatric Surgeon

 We already had hope, but these men give us confidence.  And peace. Even pride. 

HOPE; an emotional state, the opposite of which is despair, to promote a positive outcome.

At times throughout this process there have been whispers of hope and whether or not we should have some from a medical standpoint.  Or what if we didn't treat it.  Most of you have never been anything, but supportive, and for those of you I beg you to please not let the following offend you.  I however, have to get this off of my chest because it has been very upsetting to myself and to George.  I want to make this clear beyond a shadow of a doubt:

We have EVERY reason to hope!

What we don't have is room in our lives for negativity and doubt from ourselves or anyone else.  It is one thing to say our situation sucks, but it is another to say that you are unsure of our choices or to question what we should put Clayton through.  This blog is not here for people to judge our decisions.  It is here to tell Clayton's story and to update our friends and family.  I am as honest as I am about things because it helps people understand and it helps me not feel alone knowing other people know what is going on.  It is not here for anyone to feel like they have the right to tell us they aren't sure of our decisions.  They are OUR decisions.  He is OUR son. And we love and have his best interest at heart more than anyone else.  We are the ones that have been and will continue to be by his side every step of the way.  I am a realist and if "quality of life" ever becomes an issue, I am more than capable of making tough choices.  TODAY IS NOT THAT DAY AND NEITHER IS TOMORROW OR NEXT MONTH OR THE NEXT, HOPEFULLY THAT DAY WON'T COME.  To not fight now or to deny Clayton the best treatment in the world for this horrible disease because it is going to be tough to see or hear would be cowardly. It would be denying our son a chance at life.  LIFE.  The very thing this monster called cancer is trying to take from him.  Nothing good in life is easy.  Not doing 3F8 would be cowardly.  Again, I hope that those of you that have never been anything but positive and supportive do not take this rant offensively.  I also hope that those few who have had a more pessimistic view or who have questioned our choices don't hold this against us.  Please understand how hard it is to combat negativity and doubt while going through something so difficult.  Maybe because Clayton is a child that can't speak for himself it makes it harder for some to grasp if he would be OK with our choices.  The best answer I have for that is for you to watch Dylan's story and hear things in his words.  Keep in mind his neuroblastoma was more advanced at diagnosis then Clayton's was.  Also keep in mind that he is still here on this earth today. Almost seven years after diagnosis.  He however does continue to get various treatments, because he has never been completely disease free.  But he is here and he is doing good!

**Be warned that part of "Part Two" is hard to see**