Month: October 2017

It’s Beginning to Look a Bit Like a Cure (!!!)

 We have been pretty delinquent in posting, but wanted to share with you the latest update regarding Idan.  We are very leery of using the “Cure” word, and truth be told, we are many months off from knowing with certainty that Idan is or is not cured, but we have had some very encouraging test results that brought a sense of joy and relief that I cannot even begin to describe.  So we thought we’d share those results with you, and also share the impact this has had on Idan’s life in a very special way.
First, Idan’s chimerisms. We have been monitoring this number like a hawk, and, if you follow our blog, you know that the chimerism results have played with our heart strings in both the first and second stem cell transplant.  In the first, we watched with hope as Idan’s chimerisms in his T-cell line went from only 7% to over 30% with various interventions to save the graft, only to watch it plummet back down in a slow but steady drop over the course of a year.  This time around, we started with 96% in the t-cell line (exactly where you want it to be), and watched in agony as it took a nose dive shortly after transplant. Again, interventions ensued, and we were able to slow its decline, only to see other cell lines slipping.  Although we only need to replace Idan’s T-cells, if his other cell lines are not in harmony (e.g., are comprised of his own cells and not the donor’s), the prognosis for the long term viability of the donor graft is grim, and we would be looking at another rejection at some unpredictable point in the future.
So we have been monitoring this number with a mix of dread and hope, yearning and fear.  A few weeks ago, we learned that Idan’s chimerisms were stable for the first time ever, and the cell lines that had been dropping had even inched up a bit. Over a year out from transplant and chimerisms stable, with t-cells hovering around 87%, we couldn’t be more thrilled.
Second, Idan’s IgGs. When Idan was first diagnosed, one of the most telling indications of his disease was the fact that he produced zero antibodies. None. This has been the constant gaping hole in his immune system.  We have been giving Idan weekly subcutaneous IgG replacement infusions at home every weekend since he can remember.  Well, the first real test of his immune system is whether he now can make his own IgGs.  Over the summer, we stopped giving him his weekly infusions and began testing his IgG levels every few weeks.  As expected, they dropped over the first couple months as the IgGs that were floating around his bloodstream from the infusions slowly dissipated.  But a couple weeks ago, when we tested Idan’s IgG’s, now four months since his last infusion, they held steady at 475. Not zero. 475.  Idan is making his own IgGs!!!!!  An impossibility for a child with Hyper IgM Syndrome.  So, notwithstanding the fact that Idan has had four viruses since starting school (including parainfluenza, which is a pretty nasty one), he has gotten over them with relative ease.  This is the most encouraging sign so far. And it allowed us to give him his first couple vaccines, shots that even Idan welcomed with joy – no tears and no flinching! – understanding the magnitude of achieving this incredible milestone that has always been out of reach.
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Now, Idan.  As you know, Idan started school in September.  What you don’t know is that this is a very special school that caters to children who are exceptionally bright and advanced learners.  This means that Idan is surrounded by children who share his joy and love of learning, and by teachers who are well-trained and sensitized to socialization struggles that often accompany high IQ, which means they have been amazing sources of support for our Idan, who has been thrown into the deep end of socialization after only knowing what it is to be in isolation.
Importantly, Idan walks into school and sees a row of cubbies with his name sandwiched in between all the other kids’ names.  Inside the classroom, his name again appears alongside his classmates’ names – on the cubbies, on the rug, on school supplies, on pictures and projects hanging up on the walls.  When he walks into the classroom, he is greeted by a chorus of sweet voices saying, “Hi, Idan!” (They even all know how to pronounce his name!).  He belongs.  He feels it.  And he’s right where he’s supposed to be.
We were worried that Idan would be overwhelmed or scared by school. Boy, were we wrong.  He walks around with a light inside him so bright, I swear his whole face is glowing. His laughs are heartier, his smiles are wider, his eyes are shining brighter.
For those who have any thought about donating blood or bone marrow, this is what it means to save a child’s life.
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