Reece had a decent day yesterday. It was my first full day with him in over a week and a half. He was awake like it was a normal day–only napping for an hour or so–which made things feel like they are getting back to normal. He had a skin biopsy done in the early evening and they began him on a 10-week course of IV steroids, assuming the biopsy will come back positive for GVHD. There are two major side effects of oral steroids. First, his face will get very swollen over this time period. Not exactly what you want to happen after all of the other physical changes we have observed and all of his personality changes that have occurred. Second, they warned us that he could get quite moody. Which brings us to this morning…
Within five minutes of my arrival, Reece had worked himself into tears. I have no idea how this happened–one minute he was fine and the next minute it was as though the world was coming to an end. Terry left the room to shower and get ready for work and during that time, we had several bouts with tears. He is also very itchy today, so he is struggling with that. (He thinks it is unfair that I don’t want him to itch, but if he starts bleeding, it is a big problem.) The itchiness is compounding the emotional factor. When Terry got back into the room, he basically was throwing pillows at both of us and not wanting anything to do with us. Then, he told me he wanted to watch a movie, “Thomas and the Magic Railroad”, which was, of course, the one thing I forgot to bring from home today. More tears. Inconsolable tears. (Remember, he has been pretty much flat-affect for the last month.) This, I suspect, is good practice for our years with two teenage daughters in the house. Anyway, Terry left the room to grab a coffee and Reece was somewhat more calm. Then he began crying again, which made me cry. When he saw me crying he told me he missed Daddy. Terry got back to the room and the doctors showed up for morning rounds (they round just outside of the rooms in the morning and inside the rooms in the afternoon). I stepped outside thinking that Reece didn’t want to see me anyway and not 30 seconds later, he was wailing and calling my name. He did want to read a book after that and now he is comfortably watching a movie. So that is what they mean by “moody”? It could be a long 10 weeks.
Reece’s counts improved yesterday, but were slightly down again today. The doctor thought perhaps one cord is winning out over the other, which would suppress his counts somewhat. He ordered another engraftment study. We’ll get the results for both the study and the biopsy in another day or two.
I am hopeful that Reece will be up for some visits with some of his pals soon. He has been talking more about other kids, looking at Valentines gifts and other things that kids have sent to him, and he has agreed that he would like to see some people. He hasn’t wanted to see any kids until recently, so this is a good sign to me.
We’ll see how the rest of the day transpires.