One Year Cancerversary

One year ago today our lives took on a new trajectory – unexpectedly, traumatically, permanently, and so rapidly it took us months to start to really understand what the future was starting to look like. What started as an innocent, mildly concerned visit to the pediatrician in the morning ended that night in the emergency room at CHOP, a shocking preliminary diagnosis, and admission to the oncology department in the wee hours of the next day. Just like that, life can forever change.

We spent a lot of time looking back, trying to find signs of the disease, but they are fleeting and uncertain. Was that limp he had the briefly the previous summer while at the farm in Minnesota an early symptom, or just a minor injury sustained horsing around with his cousins? Was his fair coloring a sign of a blood disorder? His fussy eating, was that just being a 2.5 year old, or was it the leukemia? We’ll never know. Wesley was a healthy kid right up until he wasn’t.

The first few months were terrifying for all of us, a purely unhyperbolic use of that word. We existed in a state of near-panic, so much so that there are large blocks of time I can’t remember except in broad outlines, in part thanks to writing on this blog. Wesley is the shining star in my life, the Polaris of my north skies beckoning me into a life I never felt I was quite good enough for: having a child, being a father, somehow having a warm, loving, family, a strong marriage, and being mature enough to give him a safe, secure, and stable childhood. In one shitty day, so much of that felt like it was suddenly at risk. The most lovely thing in the world to me, this perfect little boy, who had already taught me so much, could be taken away from the beautiful life I hoped to give him and to be there to enjoy. He was going to suffer, and wither, and struggle, and who knows what else.

Cancer. It doesn’t happen to kids.

Of course, though, it does, and what was once an abstraction, kids in far-off hospitals I never visited, never saw, didn’t know, couldn’t feel their pain, the destruction it caused in so many lives has now become our permanent community.

Ahead of us is lifelong worry – it will certainly ebb and flow, but the idea of relapse will always haunt us, will always remain a possibility as will the potential side effects that may present now, or maybe in 20 years. When Wes is done with treatment in 2021 he’ll still be about 7 years out from when they’ll be willing to put the label “cured” on his condition. He was 2.5 when diagnosed, and will be old enough for a bar mitzvah by the earliest moment we might start using that word.

As we worry, and remain vigilant for Wes’ health, we have met so many families like us who need help too – they need experienced guides, connections with people who know what they are going through with the disease, help navigating relationships with their spouses, their other kids, their extended family and friendships. They sometimes need practical help with paying bills, with fighting their insurance companies, the impossible horror of burying their kids. Other times, they just need a stranger who they can vent to without shame or complication.

Like a lot of families before us, I can’t see a life ahead where we aren’t connected to other families going through what we have. Every single day, until we can prevent this disease, there are kids being diagnosed, and families being tested. Someday, like so many of our heroes, we’ll start a little foundation in Wesley’s name. Not until sometime after February, 2021 though.

In the meantime, Wes is still our focus. While we don’t talk about it as much as we did 6 months ago he’s still in treatment and he’s severely immunocompromised. Every month he gets sedated, given strong chemo into his spine, and through an IV. The days that follow we are on watch for signs of infection that could land him a long-term admission. He spends the week that follows on steroids, which initially kills his appetite and energy, and then for another week leaves him constantly hungry, and prone to severe mood swings. Every day, for the next 15 months he’ll take an immunosuppressant, and two days a week he takes a strong, broad spectrum antibiotic to bolster him from infection. There’s an illusion of routine here – the repetition starts to make it feel a bit normal, but the reality is that it’s still a rollercoaster.

I don’t cry nearly as much, or as often. We have become inured to the worst of it, our emotional responses dialed way back, but it still hurts, and we still worry. What I no longer question is our ability to survive this crisis, and any else that might come, without the kind of additional self-inflicted damage that dysfunction might have added to it. We’ve been through our child’s cancer and all of its terrible baggage together, and we had a baby in the middle of all of it.

What I believed before this saga began is now proven to me – when given an unavoidable crisis, there’s no one I’d rather have with me than Stephanie.