Sunday, February 23, 2014

Days +179 to +185: Six Months and the Journey Continues

Today marks six months post Ezra's second transplant. We feel very grateful that Ezra is overall doing well, the donor cells have settled into his body, and they are starting to work. We are hopeful that with time, Ezra will have a new, healthy immune system and we will be able to finally say that he is cured. And yet, we were reminded this week once again that this journey is far from over. 

The issue of the week is that Ezra's platelets count has drastically dropped. The doctors are concerned that he is destroying his own platelets, which sometimes happens post-transplant. They drew a frightening amount of blood (just when his hemoglobin had finally increased a little) to test for antibodies against his platelets. The results can take a week and the test only detects the antibodies 50% of the time. If his platelets drop past a certain point, they will start treatment, regardless of the test results. We will see what his numbers show this week and are once again watching closely for bruising and bleeding - signs his platelets have dropped too low. 

This latest development has left us asking "is nothing safe?" Ezra's platelets have been rock-solid since right after transplant. It was the one thing we weren't worried about. It seems the only thing we can rely on is Ezra's amazing ability to take all the poking and prodding in stride. According to his transplant doctor, he "managed to charm" the serious radiologist and he made an elevator full of cancer patients crack up with his corny jokes. We are so proud of him. We are hoping that his bloodwork this week shows that his platelets are back up and this next crisis can be averted. 

The liver ultrasound showed no change from the last one. Liver levels this week were slightly lower, but basically the same. For now, we will continue to just watch the levels. 

On top of all this, Ezra had a difficult week. His stomach is bothering him and he is exhausted. It seems that the iron deficiency is catching up to him. We have some really fun surprises for him that we're working on with the help of some amazing friends, which we are hoping will cheer him up. And we are all very much looking forward to his upcoming fifth birthday on March 8 (how can he be turning five?). Let the partying begin - we all need it!