Days +53 to +56: Patience

We are all ready to bust out of this place. Ezra is doing great. He is taking his meds like a champ. Eating well too. He is feeling energetic - a bit too energetic for this tiny hospital room. It feels like it is time to go, but the doctors aren't quite ready for us to go. One of his medications that is necessary to prevent graft versus host disease is very level dependent and they haven't been able to get it to a stable point since he switched to taking it orally. This is basically what is holding us up. We are hopeful that we will be out by the end of next week or the following week if all goes well.

On the cell front, the repeat chimerism studies basically show the same 20% donor cells. The message is still that we have to wait and see whether the donor cells grow over time. They will continue to repeat the studies periodically. The other issue is that his neutrophils dropped earlier this week because he was taken off the drug that stimulates neutrophil growth to see whether his body will hold the counts on its own. He was given a boost of this drug to protect him and the counts went back up. Now they are falling again. The doctors say this is common at this stage, but at some point soon we hope to see his body holding the neutrophil count without help.

We have been starting to learn how to care for Ezra's central line, which will include the dreaded dressing changes. Ezra apparently has been paying close attention to how the nurses care for his line because he asked for a cap change kit to play with, said he was setting up a "sterile field," and perfectly changed his therapy bear's caps. Everyone thought this was hilarious, and it was, but we would feel better if our 3 year old son was pretending to do something other than performing medical procedures. Like we said, it's time to go.

We have also been struggling with finding new ways to keep him entertained and challenged. He is becoming bored with his nightly walks around the hall, so the fabulous Jessica from Child Life put together a scavenger hunt for Ezra. This was his first scavenger hunt and he loved it! After he found his prize he literally ran back to his room and wouldn't even slow down for us to take a picture. Mission accomplished.

Last, many of you have kindly asked if Ezra still needs blood and platelets. The answer is a definite yes. He will continue to need transfusions after discharge. He is still O+ blood type. Platelet donations can be any blood type. Please contact Mary Thomas at the Sloan-Kettering blood bank at 212-639-3335 to make an appointment. We are so grateful for the role all of you have played in helping us cure Ezra.