Days +48 to +52: Working Toward the D Word

The past week has been very difficult. Between Ezra being in pain from the central line surgery and the bad news about the donor cells, times have been tough in Room 922. Thankfully, today was a better day, and although Ezra is still on a steady drip of pain killers, he is having less discomfort from his line.

Many of you have asked what the chimerism results mean for Ezra. The fact is that no one knows how this will play out and we just have to wait to see if the donor cells increase. They will repeat the studies periodically and go from there. The important thing is that he has neutrophils - whether old cells or donor cells. These cells are the first line of defense against infection. Without these cells, Ezra would be in a more urgent situation and we would not be waiting to see what happens next. Even if he was at 100% donor, it would still take many, many months for his complicated immune system to reconstitute and it would still be unclear whether he was cured for possibly about a year from transplant. He will be immune compromised for a long time. There are definitely milestones along the way that we will be hoping his immune system meets. But for now, all we can do is pray that the donor cells continue to grow and that his old immune system takes a backseat.

In the meantime, the doctors have been talking about the D word - discharge. We don't yet know when exactly it will be, but sooner rather than later if all remains status quo. In order to be discharged, Ezra needs to be taking all of his many medications by mouth and he needs to be eating and drinking. We have been working on him taking his meds orally for about 2 weeks now, adding medications very slowly. At first, he was very upset and we were worried he wouldn't be able to keep his medicines down because he hadn't eaten or drank in so long and still had so much stomach upset. But then an amazing thing happened: Ezra taught himself to use deep breathing to calm himself down and take his meds. Some of the services here like karate and yoga have talked to him about deep breathing, but we didn't discuss it in the context of taking his meds. Ezra somehow put it together and said in between sobs "I want to stop crying. Take deep breaths." And sure enough, that's what he did, and was able to take his meds. Now he is more used to them and is taking them without tears. We couldn't be prouder of our brave little fighter.

On the eating and drinking front, his appetite has been coming back and they stopped his TPN Friday night. Yesterday, his stomach was not happy with needing to work again and he was sick, but today he is much better and is chowing down. Here he is eating his milk and cereal - the first "real" food he was willing to try.