Month: September 2014

“Happy Friday News.”  That was the subject line of the email we received from Idan’s immunologist in Seattle.  Lately, it has been rare to see “good” in the same sentence as “news” when it comes to Idan’s graft.  But Friday the news was most certainly good.

As of last month, 22% of Idan’s t-cells are expressing CD40L – the vital protein Idan had zero of when he was diagnosed with Hyper IgM.  Although not a slam dunk cure of the type we had been hoping for when we went into transplant last October (i.e., 100% functioning t-cells), it is possible that the 22% of Idan’s t-cells that are functioning well will provide Idan with at least some of the tools he needs fight off the viruses, bacteria, fungus, opportunistic infections and parasites that he had zero protection against last year.  It is even possible (however remotely) that this turns out to be a cure.

All of this, of course, is theoretical until we actually see Idan make his own antibodies and respond to vaccinations, but it is a sliver of hope that we had almost let go of.

Sadly, we received happy Friday news only one day before we received the very sad news of the passing of a wonderful, bright and inspiring young man who we have come to know through our community of Hyper IgM families.  He was a senior in high school, and underwent a bone marrow transplant this past year in hopes of curing his Hyper IgM.  It is extraordinarily hard to watch young boys succumb to this disease and to witness the hardship these families face.  It is a harsh reminder of the reality of our world, of Idan’s world, and why we’ve gone down this path in search of a cure.

This month, we prepare for our return trip to Seattle and continue to go back and forth to the doctor to monitor Idan’s adrenal gland function, which is much slower to wake up from the prolonged steroids than we would have hoped for.  Once in Seattle, we will re-check Idan’s chimerisms, make sure every organ is in tact after the toxic chemotherapy and other drugs administered during and following transplant, and we will hopefully have a plan to wean Idan off some of his immunosuppressants over the next several months to a year.

We’re hoping that Seattle still holds the same spell over us as it did last year.  During our downtime, we’ll take Idan to some of the same winding and serene parks we found invigorating during our previous stay.  And we’ll also walk him through the brightly colored sunlit hallways of Seattle Children’s Hospital.  One year in, and despite all the twists and turns, the pain and moments of utter despair, and despite all odds, this graft is holding on, Idan is a happy, strong, reslient and bubbly little boy, who still has a shot at a cure.