We are happy to report that this past week was a good one! The doctors repeated the antibody tests last week. The good news is that Ezra is no longer testing positive for red blood cell antibodies. The bad news is that he still has antibodies against his own platelets. BUT, even though he still has platelet antibodies, his platelets increased this week and he has not needed IVIG. Tomorrow will be four weeks from his last high dose IVIG treatment. This is a huge improvement considering that last month he couldn't make it a few days without needing treatment.
When we asked the doctor if the red blood cell antibodies can return, she said "not usually," but we could sense the hesitation in her voice, as things with Ezra often don't follow the "usual" path. She is certainly proceeding with caution on the steroid wean and going very slowly. Ezra remains on a significant steroid dose and we remain very concerned about the side effects.
The other good news is that we are doing a trial run of an oral medication that can replace the medication that Ezra was receiving by IV three times a week at the hospital. This means that if all goes well we get to move down to clinic visits twice a week. Ezra is really excited about this change - we just hope the oral med works out. When we were explaining that for this week, Ezra would not need to go to the bed area at the hospital unless his bloodwork shows he needs medicine, Mr. Comedian responded with "ah, back to the good 'ole days of waiting in the waiting room." This kid needs to stop spending so much time with grown-ups in so many ways!
It was exactly two months ago that this crisis began. At the time, we felt like we were on the ledge, with a child in serious danger and at risk of losing his transplant again. We are grateful for his doctors who thought outside the box to get Ezra to a better place in a way that was best for him. While we know he is by no means in the clear yet, we are grateful for where he is at this moment and that we still have our happy, energetic boy keeping us on our toes.