Day 14: Another day in the right direction, and another happy occasion celebrated in the hospital.

13912898_1343132032383427_4962615802868756776_nToday marks Akiva’s and my 7th anniversary. It’s not the typical way we celebrate our anniversary (dinner, wine, a sentimental gift). Instead, we are sleeping in different places out of necessity. I woke up at 4:30 a.m. to a very alert Idan who could not fall back asleep (yesterday’s very long nap seems to have affected his sleep cycle), and Akiva rushed over at 7 a.m. with much needed coffee and breakfast. The excitement of our day was not flowers or romance, but unhooking Idan from his IV pole for exactly enough time for him to race around the halls of the unit untethered in his favorite John Deer bike. Instead of going out to a restaurant to eat tonight, we will be taking turns negotiating with Idan to take all his oral meds. No, it’s not a traditional way to celebrate, but we are celebrating nonetheless. We are together on this incredible journey, and there’s as much love and romance in that brief moment catching each other’s eye as Idan’s giggle bounces off the halls of the BMT unit down as there could ever be sipping a glass of wine.

Today, Idan cheerfully listed all the occupations he will be when he grows up: an astronaut, doctor and lawyer, in that order. Boys with Hyper IgM have a median life expectancy of 24 years. Not nearly enough time on this earth, let alone enough time to enjoy the luxury of building a career (or three, as the case may be…). But this transplant has given Idan a chance to live a long and healthy life, and he has all the reason in the world to dream big. His doctors are very happy with his progress and we are starting the slow process of transitioning his IV meds to oral so we can be discharged after his ANC count reaches 500 and stays there for three days. We are expecting at least 2-3 more weeks inpatient, but we could be discharged sooner if his counts climb more quickly. No way to tell if these new cells are Idan’s old immune system making a return or the donor’s cells starting to grow until we test chimerism in a couple weeks, but it will be an important milestone nonetheless.

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