Wednesday, March 5, 2014

Days +193 to +195: On the Ledge

After two half-size red blood cell transfusions, Ezra's hemoglobin has increased to the transfuse level, which is an improvement from where he was. He so far has handled the transfusions well in terms of adverse reactions. However, the hemoglobin level has not increased beyond the initial bump from the transfusion, which may indicate that he is still destroying red blood cells. His platelets had increased to a better level, but have been slowly decreasing, which is not a good sign. It is not clear whether the treatment is working. For now, the plan is to sit tight and watch his counts. The doctors are trying to get him out before his birthday on Saturday, but the problem is that we may go home only to be re-admitted on Monday, which will be very hard on all of us. We are not sure how we are going to proceed at this point. And all will depend on his counts in the next two days. 

The biggest concern is if the current treatment does not work, then the alternative is to administer a drug that kills off B cells. The problem is that the B cells often never return. No B cells means no ability to make antibodies. No ability to make antibodies means the transplant will be largely negated. He may still have healthy T cells (assuming we get to that point), but we will be destroying half of his new immune system. This possibility is absolutely devastating. 

One of his doctors told us not to jump off the ledge yet. Well, we feel pretty close to jumping if things don't improve soon. 

Ezra, thankfully has been feeling better. The transfusions greatly helped his energy levels. He is still having leg pain, especially during the night, which makes sleeping difficult. Ezra's child life friend Jessica has been busy coming up with fun ways to keep Ezra occupied, like a homemade piñata. Ezra had a blast bashing at the piñata and got more exercise than he's had in a long time (notice the lefty swing!). 

Please pray that his counts start to improve and that we don't have to turn to the awful alternative.