So I imagine that after throwing our NYC plans out there in the open last night there were at least a few of you who thought, "what...on Monday it was surgery and stem cells in Alabama and now Tuesday it's antibodies in New York"? Rest assured this was not a spontaneous decision nor is it a sign that anything has gotten worse. George and I have had questions and concerns lingering under the surface for a while and I have been researching and reading up on things-as I so often do. Then after a brief mention of MSKCC to our oncologist at USACW Monday, he contacted us Tuesday to let us know that he e-mailed with the doctor there and I was right they do offer an alternative to the transplant. At the same time he was e-mailing, I called about the possibility of a consult. From there, things just fell together.
We have one shot at this evil thing growing in Clayton. So you go big or go home. We have chosen to go to NYC to the best neuroblastoma specialists in the world for the most significant events of our treatment. And amongst all of the anxiety circling our circumstances, there is a small sense of peace knowing where we are going. This is the kind of decision that no matter what comes you know you have the best people on the job. Seriously, these people are the best in the WORLD. That's big. And they are 100% team Clayton...neuroblastoma, look out!
The thing about our lives these days is that when you have the momentum, you have to revel in it and keep it up as long as possible because there will inevitably come a day when things are going to seem impossible and tears and why's will come pouring out.
We are ecstatic about our new doctors in NYC, but we are not naive. The antibody treatment we will be tough. Necessary, but horrible. Horrible for me, horrible for George and of course horrible for Clayton. One of the things that brings me peace going forward to the antibody treatment is another parent's statement that her daughter never once said, "Mommy, please don't take me back".
I know many of you are interested in the antibody treatment and what it is and I will tell you. But not tonight...tomorrow. I will post this warning though, it may be hard for most of you to read. This treatment does not have the potential long term side effects of the stem cell transplant, but it will have one major side effect during treatment. As I said, more on that tomorrow.
As for a timeline, we will be here through the weekend (we think) and then maybe Monday head to NYC. But we won't know anything for sure until later. I would love if we head up Monday, consult Tuesday and then maybe surgery Thursday. But it isn't really up to me, it will all depend on their schedule. They say "jump" and we say "how high? And when?"
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