Day 176: Cautiously Optimistic:

Over the weekend we heard back from Seattle on the latest chimerism test. For the first time in over a month, his T-Cell line did not fall but rather climbed back up 2%! Idan stopped all immune suppressants (tacro) a few weeks ago and perhaps this result is signaling a stabilization of the donor graft. Some of his other lines still fell a bit, and overall, it is too soon to conclude that we are out of the woods. Still, it was a nice surprise to start the New Year off with as Amanda and I have been expecting more bad news. We will send out more chimerism tests at the end of the month and hope to see continued improvement or stability.

Idan is still quite busy with lots of doctor visits and blood tests and we continue to be in isolation for the time being. We are of course also planning ahead, and, based on these latest test results, we are on track to send Idan to kindergarten in the Fall. This of course has Amanda and I freaking out, as we have become experts in raising a medically challenged child but have neglected to learn anything about normal parenting in New York City. Between the complicated registration process, Gifted & Talented testing and the lack of good zoned school options, we are definitely feeling a bit overwhelmed. Aside from the regular stress of choosing your child’s first school, we’re faced with the daunting task of finding a school that can work with us to make sure Idan stays healthy on the one hand, and that will challenge this ridiculously smart little man. I am sure it will all work out and we will find a good program for Idan to attend next year, as he enters the real world. Regardless of how overwhelming this process is, the fact that Idan will soon be participating in these “normal” things, like story time with classmates, play dates, and riding the school bus, is something of a miracle for this little boy who battled for his life only a few years ago when he had PCP (pneumonia), and has been through two bone marrow transplants since then. Only a few short months ago, Idan told us that he was willing to go through the pain of the bone marrow transplant because he knew that, if he did, he would be able to go to school with other children. Here’s hoping his dreams come true!

1 comment for “Day 176: Cautiously Optimistic:

  1. Nomi
    January 11, 2017 at 9:27 pm

    Amazing news- I can’t wait to see his “First Day of Kindergarten” picture!!! A two percent increase is a huge deal and I am celebrating on the other side of the country with you.

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