New Baseline

He rested quietly again this morning after a decent night's sleep. Henry's carried a fever of well over 100 F for most of the night. Before he fell asleep last night, he had an episode of increasingly irrational behavior - random phrases he'd repeat over and over, sometimes angrily. "Who's going to cut the rope?" "Who will catch my poopies?" "I don't want to cut my lips" This lasted for close to an hour. He couldn't be talked to or consoled. In fact the more I tried the worse it seemed.

I got quite anxious and pressed for the resident to speak with our oncologist. In the end, the attending from the floor below came up and reviewed the resident's assessment and assured me that it was likely due to the fever, but they'd monitor it closely. They gave him Ativan and within minutes he calmed down. His temperature returned to close to normal and he slept. He'd wake every couple of hours and twist and turn, groaning, "I want to go on a wagon ride".

Overnight he continued to receive tylenol and antibiotics (Zosyn & Amikacin). His platelet count had dropped sufficiently to require a transfusion (Platelets = 22, normal 150 - 350 K/cu mm), this following his blood transfusion from yesterday (RBC 2.33, normal 3.9 - 5.3 M/cu mm). Thankfully, he had no reaction to the platelet transfusion, which apparently manifests quite quickly via specific abdominal sounds. His counts are not yet showing signs of turning around, but I think that they should be soon. We are still awaiting his Vincristine administration, held over from day 15 (yesterday).

This morning we finally went on the long awaited wagon ride. It was short-lived, as expected. He's uncomfortable sitting up yet. The desire is good though. We went once around the floor, pointing out the different parts of the beach scenes painted on all the walls. We returned to the nurse changing his bed sheets. They're beginning to be covered with his hair that has now begun to fall out. I'll run my hand through his hair and its as if he's shedding. This promises to be anxiety provoking for him. As much as we've talked about it, he's fearful of anything different right now, not to mention he hates hair in his mouth, which seems inevitable.

I try to think of him without hair. Like anything along this journey, I can't quite seem to imagine how it will seem to the full effect that reality is sure to bring. We're prepared with stocking caps and the like for him (and me, as I've shaved my head for solidarity). Every new bump we encounter makes this more and more real all the time. When I'm home things seem relatively normal, when I'm at the hospital they seem, well, different. My idea of normal is starting to adjust, the home version and hospital version are merging into a new idea of what normal is for us now.