Sunday, August 17, 2014

Days +354 to +360: We Will Get There

We got back the results of Ezra's monthly T cell check and unfortunately Ezra's T cells decreased this month. The T cells are not as far down as they were in June, but it's enough movement in the wrong direction. The decrease in T cells is likely from the increase in steroids following Ezra's auto-antibody flare-up in June. After giving us the results, Ezra's doctor reassured us that "we will get there." We hold on tight to the belief that we will indeed get there. When and at what cost are the unknowns. We always say we're ok with this process taking a long time - after all, a life saving treatment shouldn't be easy - as long as we are moving forward. It is falling backwards, especially with losing precious T cells, that hurts. 

Ezra's toe is still a little red, but improved. We are continuing with the antibiotics for a bit longer and will go from there. His hemoglobin was down this week, but one of the indicators of red blood cell destruction was normal, so the doctors weren't too concerned. We are sitting tight on the steroids for this week and then hopefully be able to wean again next week. 

One piece of positive news: the platelet antibody screen came back negative. As of now, Ezra is testing negative for antibodies for all three cell lines! A negative screen doesn't mean that the antibodies are totally gone, but it is a sign that things are quieting down. They sent out another red blood cell antibody screen test on Friday because as we go down on steroids, the antibodies can flare-up again. We are so hoping these tests stay negative. 

While the summer is great for us because we can do so much outside, it is also challenging to go to any outdoor public places because so many more people are around in the summer. We did make a great discovery to keep Ezra busy and challenged - mini golf. We discovered a great mini golf place close-by. We are able to go at quiet times and keep distance from the other players. Ezra loves it and even hit a crazy hole-in-one! Last year on this day, Ezra was on Day -5 of chemo in preparation for transplant number two and was already very ill. So grateful to be breathing fresh air far away from the gray of the hospital.