Monday, June 2, 2014

Days +278 to +284: Take Me Out to the Ballgame

First, before we get to the exciting news of the week, here is the medical update. As has been the trend lately, there is good news and bad news (better than all bad news!). The good news is that Ezra's counts were great this week. Platelets went up and were higher than they have been since this latest crisis began. Hemoglobin was also up and one of the indicators of red blood cell destruction was down. And this was all with a steroid wean, so good stuff indeed.

The bad news is that Ezra's budding new immune system has been beaten up pretty badly by the steroids and immune suppressant. Either he is no longer making IgG or he is making very little of it. His IgG levels are dropping and he will likely need IVIG again - not because of his platelets, but because he is no longer making enough IgG to protect him from infection. So, we are back to the state of his immune system prior to transplant. When Ezra's body started making IgG post-transplant, it was a huge deal for us because Hyper IgM prevented him from making IgG. It was the first sign of a cure that he was making IgG. And now we lost it, and it feels like a punch in the stomach.

The doctor, however, is confident that this is a temporary issue, and that once Ezra is off the steroids, his immune system will come back. We trust this, but also feel like we have to be guarded - we will believe it when we see it. We are waiting for some additional test results looking more closely at the different cells of his immune system, and then she will make a decision as to whether he needs IVIG now or if we wait a bit longer and continue to check levels. His long-awaited T cells have also taken a deep nose dive. Despite this negative state of immune system affairs, we know that Ezra has the strength to rise again from the ashes. It is just a matter of time and keeping him healthy in the interim. The question is how much time, and that no one knows.

The day we were discharged from the hospital following Ezra's second transplant, we wrote in this blog about how we looked at Yankees Stadium as we sat in traffic on the FDR, and thought that maybe, just maybe, Ezra would get to go to a Yankees game this year. Well, it ends up that his immune system is not strong enough to handle being in the crowds at Yankees Stadium. But that did not stop some very special friends who have made it their business to make Ezra smile. Thanks to these special miracle workers and the generosity of Yankees General Manager Brian Cashman, Ezra got his first day out at the ball game!

Yesterday, Ezra had the opportunity to watch a Yankees game from the safety of a private suite at the stadium. We didn't tell him until yesterday morning, for fear that something would happen and we wouldn't be able to go. We handed him an envelope with the tickets inside. When we explained what the tickets were for, he ran into our arms crying from overwhelming happiness. It was an emotional, beautiful moment.

The weather was spectacular, the view was spectacular - the entire experience was spectacular (except for the Yanks who lost, but hey, there's just so much we can control). We didn't think Ezra would make it through the entire game, but his eyes were glued to the field and he wasn't going to miss a minute of the game.  Thanks to all those involved from the Yankees organization, as well as the devoted people at Project Sunshine who helped with the magic making, no detail was overlooked. The suite was stocked with hot pretzels (Ezra's favorite snack), his name was on the jumbotron, he took home a bag of souvenirs, and they provided purell and sanitizing wipes! Ezra happily fell asleep last night singing "Take Me Out to the Ball Game."

One of the most difficult aspects of Ezra's medical journey is the lack of control we have over his health and really the course of his, and in turn, our lives. What we do have control over is making sure Ezra is as happy as he can be given the circumstances. We are lucky to have people in our lives who feel the same way and have helped us to override the horrible days with incredible days.