Day 30: A very good sign.

We tested Idan’s chimerism on Monday and received very good news. As a reminder, chimerism is the percentage of Idan’s new cells that belong to his donor versus his own defective immune system making a return. The results came back showing that a whopping 92% of his new T-Cells are donor t-cells, all of his myeloid cells are donor myeloid cells and 89% of his NK cells are donor NK cells. Translation: according to these initial results (which may change over the next few months), the transplant appears to have worked! A cure is in sight!!!
We have spent the last 24 hours in a bit of a haze. It is difficult to rejoice knowing what challenges lie ahead (viruses, infections, GVHD), each of which can turn back the clock, or worse. But for the first time in a very long time, we are enjoying the luxury of hope. For the past three years, “hope” had become a four-letter word. Each time it reared its head, our hearts would be crushed soon thereafter. But unlike Idan’s last transplant, with a starting point of only a tiny T-Cell graft (7% at first) that we tried everything we could to salvage, we are coming out of this transplant with a very strong graft, and a very healthy child. We have real cause to hope that a cure is indeed in sight.
We also received some very sad news yesterday. We learned of the passing of a 4 yr old boy with Hyper IgM who had his transplant in Argentina only a few weeks before Idan. We had been following his story and talking to his mother about the complications that came up post transplant. He died from a vicious virus that snuck up on him after he was released from the hospital. Our thoughts and prayers are with this family as they grieve this tremendous and unspeakable loss. Sadly, this little boy is the third Hyper IgM child in just a few months to die from complications after a bone marrow transplant, which is the only known cure for this disease. For a disease that affects only 1 in 1,000,000 boys, 3 is an alarming number of deaths. It is also a very painful and unwelcome reminder that the first year after transplant is a treacherous road, with very real dangers that can happen at anytime. We will continue to raise awareness for Hyper IgM with the hope to accelerate a safer and better cure for Hyper IgM than the risky stem cell transplants that has taken so much from these families.
As always we thank you for being part of Idan’s army and part of a movement to continue to fight for all of these precious boys so that transplant is not the only option for a cure.

 

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