Since my last post was excessively laden with negativity, I’d like to try today to be a wee bit more positive. Thanks to all my beautiful friends though, for supporting me in being a complainer through and through.
Enough complaints! Just the facts, then. After our unsuccessful stem-cell harvest, we were moved back over to 8A – the “regular” oncology ward – and out of quarantine in 8B. I was glad to move, as there are some strict rules over there preventing the coming and going of visitors. However, I wasn’t thrilled to find that we no longer have a private room and are in a ward. There never seem to be enough beds, which says a lot, I think, about the number of children out there with cancer.
I’ve stayed at the hospital the last two nights to try to give Super-Dad a bit of a break, and found that I almost instantly crippled my back from “sleeping” in the bed with Gavin. (That’s not so much a complaint as a statement.) Of course, our sleeps are interrupted by nurses coming and going in the night, and my sleep is interrupted by Gavin waking up and patting my face going, “Mama? Mama. Mamaaa.” Or “Minnow? Minnoooow.” (Minnow is Blankie, Gavin’s staunchest ally in hospital.)
Yesterday morning Beanie decided to go worm-hunting at about 6:00, early even for him, so I got us up and down to Starbucks in record time. Unfortunately, our schedule and hospital schedules don’t always mesh. We were supposed to begin chemo in the morning, and since we got up at six, do you think two or three hours might be enough to prepare? Um, no, we began at 1:00 in the afternoon. And since the first day has to run over 7 hours, it was well after bedtime by the time we finished.
As I get older, I really do recognize my faults more and more, I just don’t really care about improving on them anymore. Yes, one of my main faults is lack of patience. I sigh loudly behind people who don’t walk up, but especially down, escalators. I tap my foot with impatience over check-out line ineptitude and throw my hands up at general inefficiency. And the glaaacial proooocesses in the hospital do drive me nuts. “Soon” means within the next 5 or 6 hours, and “sometime today” probably means, “more likely tomorrow.”
Anyway, we spent the morning in the playroom and ran hydration for two hours, and then finally began his chemo at around 1:00. Craig is thoroughly tired of me hanging around the hospital and got me to leave for a couple of hours. So I went to see a movie, not a great one, but it is quite cool to find yourself completely forgetting about your own life for 20 minutes at a stretch. Thus calmed, I went back with renewed energy to find that Gavin had been sleeping for 2 hours, curled up with him on the bed and we both snoozed for another hour.
Gavin needed a transfusion of platelets yesterday as the process of dialysis had chewed through his platelet count. I was nervous, given that he’d had such a wild reaction the day before to blood products/Benadryl. I made sure to ask everyone to have our anti-allergen plan in order and on hand before giving him the platelets. I didn’t really have to worry though, as we didn’t end up transfusing until 6:00 this morning, and he didn’t react at all. Phew.
When I went out to eat last night, Craig spent the whole time getting Gav to go to sleep, only to have all his work undone by the fact that he instantly woke up when I got back, needed vitals, night-time meds, and total pj and sheet change. He didn’t then go to sleep until almost 10:00, and we had to change his sheets and diapers many times throughout the night. As we all know, chemo drugs are toxic, which means his diapers need to be changed VERY frequently. So it was kind of a long night, but I was happy with our nurse and that makes the night bearable.
We will probably be in for another couple of days, as long as nausea doesn’t set in. It hasn’t started yet, but we’re seeing the warning signs already and are dosing him with ondansetron and Gravol prophylactically.
My little boy. Hoping we have a good day today.