Roller Coaster

After all the craziness of this past week, thank goodness the weekend was spent quietly and without fanfare. Nick did not feel well for most of the week, including Saturday. However, Sunday was a better day with small improvements seen in some of the things that are making Nick feel physically off. There are so many things going on with his body right now, I can imagine he has forgotten what normal feels like. The steroids tend to make Nick restless at times and it also makes it difficult for him to sleep. Nick had less belly pain and a new medicine seems to be helping. Nick actually ate a few bites of food today. He sat up for a while and he actually got a little bit of exercise doing some ablutions. Nick is still on quite a bit of oxygen and any kind of activity is still stressful to his system. Today the doctors switched all of his medications back to IV in order to give his belly a rest of sorts. Many of his numbers are still off and the graft vs. host disease is a big concern right now. Nick is scheduled to begin the treatment to help the lung GVH tomorrow, called photopheresis. I am worried about this whole new thing. I know he needs it and they make it seem like it is a walk in the park. But, spending four hours hooked up to a machine that is sucking blood out of your body through a HUGE honkin' needle does not happen without risks. Not too mention the idea of "adding" a medication to your white blood cells, then running those cells under ultraviolet light to "activate" the cells so that the T-cells are no longer able to cause the GVH...well, hmmm, piece of cake, right? How will this effect the donor cells ability to fight the leukemia?? No one knows the answer to this one! And so as we crest the top of another huge drop on this freakin' roller coaster, I begin screaming, "Stop the world, I want to get off!"