I just returned from my first night at home in over a month. I guess I shouldn’t complain about being homesick, or I might land there longer. It was a precautionary measure, really. Three nights ago, as I was riding the night shuttle to the family house away from the hospital, the driver started coughing and complaining of a sore throat. I was sitting directly behind him as he continued to cough the duration of the trip, so I knew I had been exposed. Then, two nights ago, I found myself up with a wide-awake Caemon until after one in the morning.
Yesterday, when I made my weekly trek to the house, I was exhausted and run down. By the time I was readying myself to return to the hospital, I felt worse–heavy, lethargic, utterly worn out. I was worried I was catching that cold, so I stayed. I couldn’t risk exposing Caemon to a cold (for even the common cold would be dangerous to our boy with no immune system). That was the first twenty-four hours I’ve ever spent away from Caemon. I awoke today feeling much better but definitely ready to return to the hospital because our home scarcely feels like home without a little boy running around and making noise.
I returned to the hospital today to learn that we’re now concerned about Caemon’s weight. He has lost a couple of pounds since his diagnosis, and his doctors want him to be about four pounds heavier. This is disconcerting, and we’re trying just about everything we can to get him to eat. He’s just not interested in much. Unfortunately, his mouth sores have started to return. Mucositis–a breakdown of the tissue in the mouth and digestive tract from chemo–is what he is experiencing. This is making eating harder again, and we think it may be further down in his belly too, which makes it harder for him to want to eat at all. We had been under the impression that the side effects from this latest round of chemo were over, but, in fact, we’re told that this is the time when they are worst.
He is also beginning to lose his hair. This has hit me hard today. There are little pieces of it all over the place–his neck, his clothes, my clothes. It’s like he’s just had a very messy haircut. It has to be positively annoying. We may pull out the clippers again just to help it along, but I think we’re in for some annoying times with this. At least it’s not long, and at least it won’t be a shocking transition to see him without hair. However, there is a stark reality to this, something I hadn’t fully expected. Jodi and I have both wanted to shave our own heads in solidarity, but Caemon has asked us not to. Perhaps were he a bit older we would, but he likes us the way we are, so the way we are we stay.
As hard as it is to face all of this again and again, I’m glad to be back, and so far, illness free. I hope to work on lifting our boy’s spirits in the coming days as we wait for his counts to come up–his spirits and his number on the scale. Any tips anyone has for either one would be welcome.