Saturday is my night off from the hospital, and I dragged my feet coming back on duty today. Eight hours of sleep, pancakes, zoo, Burgerville . . . but I finally had to kiss my big kids goodbye. I am so thankful that I get to go home to them sometimes; they give me back the breath this place sucks out of me and let me come back to Samson a little bit renewed and ready for another round of hospital yuck.
Samson, on the other hand, just powers through. He had his fifth and final day of chemo today, while Aaron was here, followed by a nice bath. They are very into clean babies around here, and Samson can't believe his luck. He loves the bath, but at home we can get a little slackerish on the bath front. He has to have his chest IV covered up so it doesn't get wet, and it can't be submerged, but otherwise he can splash away.
As for the early effects of chemo, I think Samson did really well. I was prepared for him to be more miserable than I think he actually was. He had some nausea (I think), vomiting, and weakness, but he has also had a lot of happy time in the last few days, playing on his little mat, reading books, and playing scrabble on my iphone. When I remarked on this to the attending doctor on Saturday, he responded that a little "healthy denial" could be a good thing. I would disagree that I am in any sort of denial, healthy or otherwise, because I know the chemo damages his body and he is going to get sicker, but I am nevertheless taking pleasure in the fact that he hasn't gotten more sick sooner. Right? See how these people annoy me?
Moving along, tomorrow is a no chemo day, in order to make sure the drugs clear Samson's body before the big Day Zero on Tuesday, when he gets Harriet's cells. He will start a new drug tomorrow that is intended to fight graft-versus-host disease (GVHD) and this drug will be given to him continuously for some time. If you recall, GVHD is one of the major issues in bone marrow transplant. In other organ transplants, the body's immune system tends to reject the new donor tissue, a heart or whatever. But in bone marrow transplant, it is the immune system that is new, so it tends to reject various parts of the body that it recognizes as different, which would be the entirety of Samson. GVHD often affects skin, liver, and gut. Lungs are also vulnerable and Samson's doctors are of course worried about his lungs. Other anti-GVHD drugs are on the schedule after transplant and that will be a big part of his followup care for the next year. Luckily, GVHD tends to be less severe with a matched sibling donor (thank you Harriet!).
Tuesday, transplant day, Samson will have one session of total body irradiation, which serves to further suppress his immune system in preparation for the receipt of Harriet's donor cells. I had my radiation education session the week before last, which gave me some information about what to expect. Samson will have to be sedated so he will be still for the treatment, but the entire procedure will take only about 45 minutes. As for the risks and side effects, they are largely unknown. On one hand, he is getting only a small fraction of the radiation that, say, one would receive for treatment of breast cancer. On the other hand, it is radiation of his entire body, and he is a little baby. While they know some of the more severe long term effects of greater doses of radiation on young children, they haven't done a lot of these smaller doses of TBI for very young transplant patients. As it stands, we have been warned about some grim long term possibilities, but we have some reason to be hopeful Samson will not see the worst of these.
I feel more hopeful and positive than I did last week before we came to the hospital. I dreaded starting this, but now that we have started, Samson has once again had a chance to remind me just how strong he is. How could I doubt him?
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