What a dying child taught me about the superpower of bearing witness
This summer, I teamed up with eight women (most of whom I’d never met before) to help give an extraordinary thirteen-year-old girl as extraordinary a death as we could muster with all our creativity, love, and alpha-female energy.
I didn’t know the full extent of what I was signing up for when I answered my friend Sarah’s frantic call just over a year ago. An MRI requested by Molly’s optometrist, meant to confirm that her blurry vision was caused by too much pandemic screen time, had instead revealed a tumor in her brain. Grasping for a way to be helpful, I googled “pediatric brain cancer” and showed Sarah that survivability was higher for kids with glioblastoma than adults. A meaningless comparison rendered even more irrelevant because that wasn’t what Molly had anyway. My zero years of medical training had shockingly led me to the wrong internet diagnosis.
The real-life doctors at Seattle Children’s Hospital told Sarah that Molly had DIPG, or diffuse intrinsic pontine glioma. In the first hours, we couldn’t process the rest of the words that came attached to her diagnosis: “rare,” “only a few hundred children a year,” and “no established cure.”
Sarah had called me because my husband Burton had been diagnosed with Stage IV cancer with thirteen tumors in his brain just the year before.
Molly seemed to find a little comfort in the knowledge that someone else she had known since she was a baby was going through something similar. And I loved being a conduit for helping her feel not alone.
“Does Burton taste metal in his mouth when he gets IV chemo?” Molly asked me after her treatment one day.
“He doesn’t get chemo, Molly,” I answered as directly as I could, while searching for a way to build a bridge. “His immunotherapy is on an IV though, so I’ll ask him how it tastes and report back. But he was on steroids just like you were for his brain swelling at the beginning, and he couldn’t sleep at all so he got pretty mean and grouchy. You didn’t though. Even on steroids, you weren’t ever mean!” I marveled as I slid in the final edge piece of our Women Warriors jigsaw puzzle.
