Days +313 to +319: Working On It

Last week started out on an up note and ended on a down one. When we arrived at clinic last Monday, Ezra's counts had improved. Not back to where they had been, but better. He received high dose IVIG, which went fine. We then came back to clinic on Thursday and his numbers were worse. It ends up that due to a miscommunication, the doctor we had seen on Monday had lowered Ezra's steroid dose too much. So we had to go back up again to a higher dose of steroids for another three days. We are returning to Sloan tomorrow to see how his counts responded to the steroids. The goal is to get his counts back up and stable, and to then start weaning the steroids again. 

At this point, the thinking is that the rhinovirus likely triggered the antibodies to reactivate. His counts aren't terrible, but the goal is to prevent any destruction from getting out of control. The strength of the antibodies against red blood cells is still at the weakest level, which is where it has been over the last couple of months. Ezra tested negative for neutrophil antibodies this time around. He has not had an issue with his neutrophils since the day all of his counts tanked, but it is still great that he was able to get rid of those antibodies. We have not re-tested for platelet antibodies recently because the test requires a massive amount of blood, and Ezra doesn't have extra hemoglobin to spare. His platelets have been at a safe number even with the latest set back, and that's what matters most. 

So, as always, we will see what tomorrow brings. Ezra is such an unbelievable trooper about it all - the more frequent (and longer) clinic visits and the increase in the nastiest tasting of all his meds (steroids). He marched into his bed at clinic for IVIG and started exclaiming about everything he could see out the window, even though he has seen that view countless times. He danced around doing his Three Stooges act and had a blast goofing around with the clowns. The rhinovirus is gone and his energy level is great. We're thankful that whatever is going on inside has not affected how he feels. 

Ezra has been waiting to see fireworks again since last July 4th. He got his wish this week. We found a quiet spot to watch our town's fireworks and he of course loved every minute of it. Last July 4th, we had pretty much made the decision to move forward with the second transplant. We remember Ezra's excitement over his first fireworks show and thinking it will be a miracle if he is able to enjoy the fireworks again next year. While too much is still so unknown, we are thankful that today our resilient little man is exploding with so much life.