Day 476: Winter Hibernation

Once again it has been way too long since our last update. With blogs like ours, it turns out that when there is no news, it mostly means that is good news. Since our last post we got results from another chimerism test back in late December which did not show much change. T-cells were still in the 20% range but Myeloid cells dropped even further to 5%. We assume that by the next test nothing will be left of his donor Myeloid cell line (that is the majority of the bone marrow, which includes most of the red and white blood cells). As always we still hope that he might hang on to his 20% donor T-cells, but it is highly unlikely. We have decided to hold off on a 3rd DLI and trip back to Seattle and have been planning our life around the idea that we will head back to Seattle in 2 years for a second transplant.

In the meantime Idan has essentially gone back to his Hyper IGM state. It some ways this is a relief, as most the dangers of the post-BMT year are behind us. We have gotten off the majority of medications and immune suppressants that he was on for almost 15 months.  He only takes some supplements daily and the Bactrim prophylaxis antibiotic to prevent the return of the PCP pneumonia that landed us in the ICU almost two years ago, and his weekly SubQ IgG infusions (antibodies).  We keep him safe with his SubQ and by limiting his exposure to kids and people in general. This has made the winter very hard on us, as flu is everywhere and we sometime go weeks without seeing close family if someone has a cold. And even with all that, he still picks up a cold virus now and then, which goes to show how vulnerable he still is.  The Spring and the end of flu season will be a blessing, and we hope to be able to get Idan out and about a little more.

Doctor visits and blood tests have also been more spread out now and that is a very welcome change. Just three months ago we were going in twice a week for check ups and blood tests and Idan was losing his patience for all the pokes and prodding. If we can manage to keep him healthy we only have one more poke this month to send blood back to Seattle and then we should be able to have an 8 week break from doctors and blood work. We hope 🙂

Idan’s language skills have really advanced in last three months Amanda and I feel like he is more of a 4 year old little boy then a 2.5 year old toddler. His favorite activity these days is putting together a large floor puzzle of the United States, and he excitedly yells “Seattle!!” every-time he sees the state of Washington (at least we know he has warm feelings towards his experience there).  He is very active and happy, and we count our blessings every day that the transplant did not hold his development back significantly. All we can hope for now is to continue to be able to keep him healthy and safe and give him as much of a normal life as we can as we plan for our next big adventure.

Thanks to all of you for checking in and following our story. We hope to keep the updates coming regularly and wish you all a happy Valentine’s Day!

Here is a short clip from his last meetup with his little cousin:

 
Idan putting together his large flood puzzle of U.S.A