Signposts of his illness
We’ve never been helicopter parents, hovering over our kid worried about every little sniffle and scrape, but there’s no escaping the necessity now of careful monitoring. His weight, his temperature, how quickly incisions and cuts and bites are healing, his color and appetite and mood, breathing, and the frequency and quality of his diaper destruction, are just some of the many signs we are now vigilant about watching and noting.
There have been other changes as well, and it’s difficult to know what’s to be expected, what’s worrisome, and what is completely unrelated to his condition. He’s still a kid afterall.
After his bone marrow sampling we were told to expect a quick recovery – some mild soreness for a day and then he’d be back to normal. However, days passed – and eventually more than a week – where his walking seemed to be getting worse, less confident. He was wobbly standing up, often looked for assistance, and was resistant to walking more than a short distance on his own. No one else seemed concerned in outpatient care, but when he was re-admitted to CHOP last week we raised the issue once again and they took it seriously. From observation, it was clear he wasn’t actually limping – but he was shuffling, and didn’t have a normal gait.
Eventually the team recognized the symptoms as a side-effect of one of his drugs that, particularly at his age – somewhat disassociates limbs from the subconscious motor control that we take for granted. He had lost some of the intuitive sense for how his legs were oriented relative to his body, making his movements much more tentative. This squared with observation – it was plain he wasn’t in pain and wasn’t truly weak, just a little disoriented. The effect has already begun to dissipate as that drug leaves his system.
He also had a nasty, but totally normal, reaction to dex – a steroid that caused mood swings and an overall darkness we’ve never seen before in him, and a really intense but limited appetite. He’s been off the dex for more than a week and the change back to his sweet, silly self has made me cry more than once.
The couple of minor scars – the incision made for his port, for instance – I hope he someday wears as a badge of courage. He’s earning those badges every day.
Perhaps the most superficial symptom of his cancer and treatment is the hair loss, which is just beginning. There’s no pain or other impact of hair loss, but it’s such an iconic sign of cancer that it’s an impossible to ignore reminder of his condition, both for us and for everyone who will meet him for now. He has such beautiful hair and eyelashes, and seeing it thinning out, left behind on shirts and towels, is heavier than it should be, and it will present its own social challenges – the understandable sympathy and even a little horror for strangers seeing an otherwise healthy kid who has such an overt marker of illness is itself a side-effect of this leukemia.
As his cancer and treatment progress, his symptoms and side-effects will only get more pronounced. What we always have to remember is that as hard as it is to see what he has to endure, it’s all in service of a miracle cure that we are fortunate to have access to.
