Over a week has passed since I last wrote an update. Time in the hospital follows a very different chronology than the rest of the world. Days and weeks blend together. Weekends come and go without much of any awareness, other than that Caemon has his weekend meds, and there are fewer people needing to check in on him.
Since I last wrote, Caemon has finished his chemotherapy. He is five days out from his last dose, and his counts have fallen as expected. Today, his neutrophils are at zero, which is called “nadir.” Now we wait for the counts to begin to recover. We are hoping for a chance to go home before transplant. It may just be a couple of days, but any sort of reset will be nice. Caemon handled this round of chemo very well. He had a few fevers, but nothing long-term, and he had a bit of a rash from one of the drugs, but that too was manageable. It has been overwhelmingly clear what a difference it makes for him to undergo these treatments with less disease in his body. The fact that it seems to continue to work is heartening.
At this point, our biggest goals are to keep Caemon free of infection and to keep his spirits up. Our nurses are doing a wonderful job of making sure he has a certain number of hours each day when he is free of his IV pole. He looks forward to being hep-locked for his trips to private neutropenic play time in the hospital’s playroom. This playtime offers such great reprieve from the tiny hospital room, and it lets him branch out and explore a bit more, especially without an awkward IV pole attached to him. While initially he only wanted to play with medical supplies there, he now has branched out to playing with cars, crafting with glue and other fun supplies, and even painting.
He also enjoys a daily visit to a patio near the playroom–sort of a rooftop deck in the middle of a couple of wings of the hospital. It’s nice that he can see the sky, breathe a little fresh air, and remember what it feels like simply to be outdoors. He never stays for long, but I know he finds it refreshing.
We all particularly enjoy having Caemon free of his tubes because it increases snuggle time, and our boy is very fond of this. Often in the evening, before he has to be hooked back up, we’ll curl up in the big chair together. These are sweet moments that feel just a little more normal than hospital bed cuddles. So much of what we do here is driven by our desire to make him comfortable, to provide him with a sense of normalcy, and for the most part, I think we have achieved a sense of home here in the hospital–as much of a sense of home as we’re all comfortable with anyway.
Right now, though, we’re missing a very important part of that home equation, and that is Jodi. She has come down with a cold, and she has to stay away until she is no longer symptomatic. We all feel a little out of sorts without one of our little trio here, and although time does have a way of slipping by here in the hospital, my hunch is this is going to be a very long week.
I will write more when time allows. Meanwhile, take a look at that smile. He’s still dreamy, bald head and all.