Sunday, February 16, 2014

Days +166 to +178: Pedaling Along

We have the results back from the latest round of testing on Ezra's T cells. One T cell line went up, although not as much of a jump as last month. The other T cell line did not go up at all. We were a little disappointed in the results, but the doctor says this is absolutely normal, and he is within the expected range of T cells for this point post-transplant for a T cell depleted transplant. The rate of T cell growth is completely unpredictable. He still has a ways to go until he reaches the first T cell milestone. There is no way of knowing if it will take him 6 months or 1 month to reach. As we should have known by now, it's all about expectations - last month, we had zero expectations about his T cells because of the steroids and they jumped up. This month, we expected more of an increase and it didn't happen. So, we will continue to be optimistic, but no more expectations. 

We also received the results of the initial testing of the function of these new T cells in response to a general antigen. He has a good amount of function, but not normal yet. The doctor is happy with the function at this stage. Ezra's defective T cells prior to transplant actually responded normally to this test, so it is not quite an indicator of a cure, but it is a very good sign that his new, healthy T cells are maturing and starting to function. 

We also received the results of the latest round of cell line chimerism tests. His T cells are 99% donor and all other cell lines are 100% donor. The doctor said that she thinks we can feel like Ezra's chimerism is stable because now he has T cells coming in and he is still 99% donor. This was really fantastic to hear, although we're not quite ready to take that sigh of relief. Then again, we may never be able to take that sigh of relief!

The bad news of the week is that Ezra's liver levels have continued to rise. He is going to have another ultrasound on Friday to check for any changes. It is not at all clear what is going on. The doctors are leaning towards it being medication-related, although we also discussed the possibility of a virus. We'll see what the ultrasound and additional tests show this week and go from there. 

This picture was taken a couple of weeks ago before the crazy snowstorms. We were so excited that Ezra got back on his bike because he has not ridden in over a year. He only had enough strength to pedal a few feet, but we are hoping that with a little more time he will be racing along with Daddy!