Happy New Year! Our holidays went well and we even got out and did a couple of things as a family. One of the memorable events was decorating the City of Hope float for the Rose Bowl Parade. I've always wanted to decorate a float but never thought in a million years it would be for COH. Not only did this have special meaning for us but some of the other volunteers were COH bone marrow transplant survivors. There is comfort speaking with others who understand what you have gone through. Sometimes it's hard to describe events to family and friends without sounding ungrateful or complaining. I guess part of the problem is if someone asks me how Steven is doing, I'm really going to tell you!
I've made a New Year's resolution to start living life again. Steven's illness was defining me and I started feeling like I couldn't think of anything else or move on. We still have challenges but we have come so far. It's time to start thinking of other things besides our next appointment and blood count results. There is a certain amount of PTSD involved with going through a major medical event. Ours was not without exception however it is time to move on.
We passed another milestone at Steven's January appointment, after next week, he can stop taking his last immunosuppressant. Steven has been slowly weening off of Tacrolimus, decreasing one tablet every 2 weeks. This past month we have been asked to be vigilant with any symptoms of graft vs. host disease (GVHD). It has presented itself in the past as a rash on his chest and up his neck. It's a mild symptom, never the less one we need to keep an eye on. Steven's new bone marrow is still trying to figure out what should be there and what shouldn't be there in the cellular world. The goal is to be off all immunosuppressants unlike those patients who have had a large organ transplant. They are on immunosuppressants the rest of their life. It's all about your immune system! We go back in another month.
