Ezra had a great weekend. He played a lot and laughed a lot with few complaints. Everything gave him the giggles - even the nurse saying "I'm hanging your medication." We got a mat in the room and set up his new Thomas Take 'n Play, and have been enjoying looking out the window and playing I Spy. He is fascinated by the smoke stacks that we can see from our room, but disturbed by the fact that there hasn't been any smoke coming out. He has decided that the factory went to Queens for vacation (and took the Queensboro bridge, of course) and that's why there's no smoke. Plausible theory.
He also, unbelievably, has been eating really well. Ezra has never been a good eater and we expected him to shut down quickly during this process. But the doctors are holding off on starting TPN because he's eating so well. Pretty amazing.
There's a big "however" - however, the likely reason that Ezra is doing so well is that his counts haven't bottomed out yet. Certain of his old white blood cells are still present. The docs told us that he would be at zero before the transplant, but he's not there yet. They aren't worried and say he will reach zero in the upcoming days and that's when he will likely have more stomach discomfort, nausea and potentially mouth and other sores. But it's great that he is having these good days because each good day is one less bad day and gets us closer to engraftment.
Ezra also tested positive for rhinovirus - the common cold. They say he will pass it and right now his symptoms are nearly non-existent.
Ezra also spent the weekend playing with both sets of grandparents, and we got a visit from the famously awesome Hindy Poupko and Seth Galena who have been giving us lots of advice to help us through this difficult time. They gave Ezra this great golf set and he has been whacking the balls around the room. And Dr. Ezra was in full force wearing his new personalized scrubs, which were a gift from Bobby and Thea Block.
Just a note about blood and platelet donations: thank you all so much for responding to the call. Many have asked if there's any way to donate out of state - unfortunately, donations for Ezra must be made at Sloan. But there are certainly other patients who can use your blood! We also believe that they give parking vouchers if you are driving, so ask when you make an appointment. Thank you!!!
