I never saw a wild thing sorry for itself. A small bird will drop frozen dead from a bough without ever having felt sorry for itself.
– D.H. Lawrence
For those wondering about the long silence, don’t worry, everything is fine. Well, as fine as things can be in the current situation. Still trying to learn the lesson of living in the moment, impossible to be successful at it every day but there are days that feel good, and despite spending the entire day in the hospital, today has been a pretty good day.
We have a weekend reprieve before going in for our next round of chemo this coming Monday. Unexpected, as we were planning on starting today, but welcome.
We returned home from Sick Kids on the evening of Tuesday the 3rd. We had spent the previous two days either stuck in the room or wandering around the empty holiday-Monday hospital, as we’d been banned from the playroom due to concerns about a possible bacterial infection. Luckily, no infection ever surfaced, so no known source of the fever was ever discovered. Gavin received his last shot of the chemo drug vincristine, and with a push of a syringe, was officially finished with the first round. We went for an EEG to check his brain activity, (26 electrodes glued to a toddler’s head -woo!) and his brain activity showed normal.
We were only home for one day when Gavin pulled out his NG tube at night, forcing us to return to clinic last Thursday to have it, um, reinstalled. This is one procedure I could really do without, but the upside of a hospital visit was learning that his blood counts had returned to normal, in fact, ridiculously higher than normal due to the white-blood cell inducing G-CSF. The downside of this news is that he’s ready to begin the next course.
Life at home has definitely been an adjustment. I don’t exactly know what the opposite of a germophobe is, but Craig and I both probably fit the definition. We will happily eat something that has fallen on the floor, (our floor, I mean) have no qualms about drinking from someone else’s glass, and probably fall on the slack side in the hand-washing category. Of course, Craig really pushes the envelope by eating things many others would consider “off”, but seems to be blessed with a formidable constitution which means that he pretty much never gets sick. Then again, I don’t really get sick that much either so I guess it’s working for us!
We’ve had to change our wicked ways in the recent past. In hospital, these are the rules:
- wash your hands, wash your hands, wash your hands
- if it falls on the floor, it’s garbage
- when in doubt, wear gloves
- alcohol swabs are your friends
Now we’ve had to transfer these rules to home in an effort to keep a sanitary environment for Gavin. For the first time ever, Craig actually said, “I think we need to buy some hand sanitizer.” My OCD tendencies to orderliness are now being applied to sanitation too, oh Lord help me. I have not yet taken to dousing visitors with anti-bacterial spray but have posted a sign in the front hall reminding people to wash their hands. And obviously, visitors need to be screened before arrival. Sniffles, please stay away!
We are also extremely busy at home. Gavin is not taking quite as many medications as he was when we first arrived home but still needs a few doses of this and that. A home-care nurse comes every day to check in and take care of his central line. He has to receive formula feeds five times a day spaced roughly three hours apart, and it usually takes about an hour to run a feed. And we also have to fit in naps and play. Rather like taking care of a newborn but an extremely mobile one with definite opinions.
I had really been prepared today to go back in and although it’s a relief, there’s also a sense that the sooner we do it, the sooner we get it over with. We had a very heavy meeting yesterday with the team who will be overseeing Gavin’s high-dose chemo treatment. It was very difficult to hear about the side effects he’ll suffer from receiving such intensive chemo so young. I can’t write them down, I’m not yet ready to go there, but there are many challenges he’ll face in the future. It is doubly difficult to hear all of it when he is only now beginning to show signs of a true recovery from his surgery. But we know, beyond a shadow of a doubt, that without treatment this aggressive tumour will return, because it always does.
Yesterday knocked down, today we get back up. Gavin doesn’t yet know how to feel sorry for himself, he is just happy if we are there with him.
I need to learn how to not feel sorry for myself too.