Today was a little better than yesterday, but still a challenge. The Attending Physician this morning said that Ryan’s pain could be due to the steroids. However, he must have the steroids for the GVHD. The earlier you intervene with steroids, the better the outcome, and less chance that the GVHD will get worse or become a long term issue (chronic GVHD). The good news is that if Ryan responds well, they could start tapering him off the steroids as early as next week. In the meantime, it is a constant battle to try to get ahead of the pain and itching with Morphine, Oxycodone, and anti-itch drugs. It is quite the exercise in prediction and timing to keep him comfortable.
Another piece of good news is that Ryan’s ANC doubled again overnight and is now at 1288. It is pretty impressive to see it go from zero to 1288 in only four days. In addition, he has made a few platelets on his own as well, and his count has increased from 23,000 to 30,000 in the last few days. His red cell count has decreased a little bit, but it is normal to have the white blood cells recover first and to have red cells and platelets lag behind. I am pretty happy to see any movement with the platelet count this early and I am not yet concerned with the drop in the red count.
The “Art Cart” came around today and I picked out a wooden train kit with paints for Ryan. I figured I would stash it away until he was feeling better (i.e., in his right mind), but to my surprise, when he saw it he said “I want to put that together now.” With the steroids, I really didn’t think he would have the patience. I was sure that there would be all sorts of issues with the project that would send him into a rage.
However, he agreed to get out of bed and sit with me on a mat on the floor to put it together. There was no rage, but I did get scolded several times for not holding the paint right and not sitting the right way. Apparently, he wanted my legs curled in a different direction for some reason. I tried to accommodate his crazy request to avoid conflict, but one of my legs eventually fell asleep. We did make it through most of the train project. We are just a few wheels and some paint short of having it complete. Maybe tomorrow…
Something finally made Ryan smile later in the day. There is a guy that comes through the halls every few days standing on a floor cleaning machine (looks like a cross between a Segway and a Zamboni with a scrubber underneath it). He noticed that Ryan was watching him through the glass doors of our room so he drove over in front of us and did several “donuts” in front of us while waving to Ryan. Ryan even did a courtesy wave back.