Thank you to everyone for your messages to Ezra that he feel better - they are much appreciated! After a rough week, he is doing better with the pain from the mediport surgery. They accessed the port for the first time today. He had some anxiety and tears, but with the help of numbing cream, he did not seem to feel the needle going in. We are hoping that with time he will get used to the process. It has to be accessed each time we come to clinic, which for now is still several times a week, so there are lots of opportunities for him to get used to it (unfortunately). Clinic is exhausting (as you can see), but at least he has his friends with him.
We've been trying to keep him busy at home with different projects and activities. He loves helping Mommy and Bubbe cook and bake. Chocolate chip-sprinkle cookies are his specialty! He has started to ask to go places like the park. It's really heartbreaking to say no, especially when there is no sense of when he will be able to return to his pre-transplant (still limited) activity.
The plan is still to wait until he is off the immunosuppressants before re-testing for donor cells. The doctors are doing a very, very slow taper and it will be a while before he is off them entirely. Usually Day +100 is considered to be a transplant milestone when the immune system starts to kick in more and some of the post-transplant risks become less likely. No celebrations for us on this Day +100.
