Today marks three months from Ezra's transplant. He had a clinic visit today and the doctor was talking about how well he is doing. No infections, no graft versus host disease. He's eating and drinking well - even trying new foods (case in point, here's a picture of him trying pizza for the first time-finally!). He has energy and his labs look ok. Basically, we are back to where he was before transplant except that his immune system is in worse shape. His neutrophils still aren't as high has they need to be and he is still not making platelets and remains dependent on transfusions.
We are extremely grateful that Ezra is doing so well at this point. If the transplant was failing and he was sick, this would be an entirely different situation. The plan is still to just taper off the immunosuppressants and see if that makes a difference in the number of donor cells. They are tapering these drugs very, very slowly because, as one doctor explained, you can get graft versus host disease from just 1% donor cells and once you get it, there's no turning back. They won't check for donor chimerism again until after he is off these drugs.
Ezra is scheduled for surgery on Monday to have a mediport implanted. He still has his temporary central line, which can't stay much longer. The mediport goes under the skin and is accessed with a needle from the outside. The area will be numbed beforehand each time it is accessed. It is much less intrusive than the central line, has less infection risk and will allow Ezra to take baths. We know it will take some getting used to for him, but child life has armed us with lots of resources to try and explain this new "button" that will be under his skin. The surgery is more invasive than the procedure for the temporary line and requires more time under anesthesia. We are expecting him to have some pain for a while afterwards, but are hopeful that the mediport will ultimately allow him more freedom. We will let everyone know how he is doing after surgery.
And please keep up the prayers and positive thoughts for those donor cells to grow. We are still hoping for a miracle.
