So hard not to worry
Maybe, probably, worry isn’t the right word. I don’t consciously wonder what-if and obsess over abstract concerns, but living with a child with cancer means we are never more than a minor symptom away from being put on high-alert. Is he feeling a little too warm? Not eating well? Unusually grouchy? Bruises? Looking too pale? Too flushed? So many small signs put us into monitoring mode, and from there it’s just a small step to the ER, hospitalization, and so on, so we have to prepare ourselves. And preparation takes us out of routine life and into survival mode again. And again. And again. Triggered. That’s what it is. Not worried, just triggered. Peace and comfort are derailed by the unwelcome intrusion of bad thoughts, and consequences we can’t ignore now. Triggered.
Wes is on his second nap today – very unusual. He hasn’t been eating well lately, and today his temperature fluctuated up and down, almost touching the low-end of the fever range that we have to report to our oncology team, usually costing him a trip through the ER, at best. What could it be, viral? We’ve had so little contact with anyone for months that would seem impossible. Re..lapse?
Relapse is a scary thought, and one we don’t verbalize much, but it’s always the nucleus of our worry. Could this be it? Might we have to start all over? How would we handle it? CAN we handle it? We know the statistics, we know what we would have to go through again, but Wes isn’t a statistic, and knowing isn’t knowing. Do I think he’s relapsed? No, not this time. Objective math tells me the longer he goes without relapse the less likely it is to ever happen… but at the same time, irrational lizard brain tells me the exact opposite, that the more time passes the more likely this rare fate becomes. I know now this feeling will never quite go away, even long after treatment ends. As a moderator of a large leukemia forum online I see and feel the stories of literally thousands of families just like ours, and every day one of them relapses. Sometimes it’s while still in treatment, like Wes, and sometimes years and years later. Boom, the needle scratches, the music stops, and they are back at the start of their struggle. This time will be harder. Will that be us? Will we ever be free of that worry?
Of course we try to not punish Wes for it – we don’t want to let his childhood be filled with dread and worry, and I want to protect him as much from the emotional burden, the triggering, as from the cancer itself. I want him to be able to live carefree, to feel safe, even if we don’t. But he’s smart, and empathic, he knows when something bothers us, he knows what doctors are about, he knows when routines change. It’s not fair to lie, to keep him from the truth of what he’s going through, but it’s also not fair to let him carry so much burden at such a young age. Last week his mom had knee surgery and he spent the entire day concerned for her; the week before, Ruth had a checkup and he was devastated. He loves his doctors and nurses but he never wants the rest of us to have to see our own. After all that he’s been through, his caring and empathy are defining qualities, but it really should be us worrying for him, not the other way around. He shouldn’t be burdened.
I also can’t imagine letting Ruthie have to pay for his tragedies by not getting her own childhood, her own parents to shower her with attention. She deserves so much more than to be second chair, so as she gets older and more conscious we have to constantly do better for her as well. The cancer isn’t hers, but we can’t deny it will impact every aspect of her emotional life too.
Every night for the past year I’ve shared a bed with Wes. It began out of practical need – Ruth was just born and was cosleeping with Stephanie, and Wes needed me there for him, especially back then when he was so ill so often. I rarely slept a full night, up so many times to check on him, to take him to the bathroom, to fix him food. These days I don’t often sleep like I once did – I was a strong, easy sleeper my whole life before – but now nighttimes are easier, less acutely difficult. I sleep best now just before and after dawn, though rarely enough.
Last week, just before bed, he touched my face gently and told me I was beautiful. It made me shiver. I’ll hold on to that feeling as much as possible. It’s why none of the worry, the triggering, none of it will ever be enough not to do what we have to for him. But still, it’s hard, it takes its toll. He deserves better.
When you experience so much trauma so frequently and so deeply, any deescalation can feel scary. As his treatment shifted from frontline to maintenance, the prospect of not seeing doctors many times a week was oddly terrifying; they were our lifelines, and being out on our own felt like the rug had been ripped out from under our feet at times. Instead of multiple bloodtests a week, now we might have to wait a month or more to know what was going on in his body. So much can happen in a month. We’ve got about 250 days left until the end of his treatment. That’s scary too, knowing the doctors have done everything they can, leaving the rest to his frail little body. We’ll be sent away from our oncology team, hoping never to return but without a damned thing we can do to prevent it if we should.
