Day 303 – The New Normal:

It’s been a while since we last wrote, and as in the past, no news is good news. At the end of April, we tested Idan donor chimerism again. In a reversal from the March results, which showed a dip in chimerism, the donor t-cells went back up to 89%. We were very pleased with his results. His other cells have been dancing around, but overall, if this stays the case, Seattle believes this may indicate a stabilization of his graft. Of course, as always, it is too early to know for sure, but as we approach the year mark for Idan’s transplant this July, we will feel good if his grafts stays at this level. 

The next step we are starting to explore is getting Idan off the last few medications he is on and maybe entertaining a break in his immunoglobulin infusions. We are waiting for word from Seattle if they feel it is a good time to do this. As you may recall, Idan had been getting weekly infusions of antibodies since his diagnosis at eight months old. These antibodies have been the main thing keeping him safe all these years, but with his new donor immune system, it may be time to see if he can produce his own antibodies and make a response to vaccines. This would be the main test for a functioning immune system. 
In the meantime, our NY transplant doctor has run many functional tests and feels like it is safe for Idan to start partaking in normal childhood activities. Last month we signed him up for soccer classes and he got to be with other kids his age for the first time. We started to get reacquainted with play grounds, which Idan has missed out on for a long time, and he is loving exploring all the different ones in our neighborhood. We got the green light for him to play in the grass, pick up twigs and sticks, acorns or rocks, things that may seem mundane but Idan has felt excluded for far too long from these childhood activities. Think about that for a second. Idan is almost five but, fearing unknown bacteria, fungus or parasites that lurk in fresh soil, Idan has never picked up a stick or rock in the park in his life! He gave a big bashful smile when we told him he can do this now. 
Up next we have a lot planned. First, he and we are open for play dates with kids both inside and outside, so let us know if you are Upper West Side folk 🙂 Next month we will head to to Anaheim, California for the National immunodeficiency Foundation Conference and enjoy a couple of days in Disneyland! Yes, you heard us, Idan is going to Disneyland!!!! None of us know what to expect, but we are all excited for the adventure! 
As always, we are thankful to all of you for following our journey and supporting us and our cause. Look out for Idan’s One Year transplant anniversary in July along with a fundraiser for the Hyper IgM Foundation (or as Idan cutely calls it, the Hyper GGM Foundation) in honor of Idan’s excellent health. Our hope is to break last year’s record and help accelerate a cure for all children with Hyper IgM Syndrome.

2 comments for “Day 303 – The New Normal:

  1. May 18, 2017 at 10:56 am

    So happy to learn of his progress and ability to take part in normal activities. It’s been a long haul but hopefully he’ll respond well to the transition. He is a remarkable youngster with incredible parents and grandparents and friends who delight in his progress. God bless.

  2. Linda Wachtel
    May 18, 2017 at 4:00 pm

    This is so wonderful to read in every and so many ways… that’s what we all want for our kids especially when life feels fragile… we want them to have and experience their childhood… Please post pictures of all of the adventures to come!! ❤️❌⭕️👍🎉

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