My Son Is Dying and No One Believes Me

Allison Quinn is writing a series of columns about her son’s treatment.

I’m having trouble convincing people my son is staring down a death sentence.

That is partly because he keeps doing things like filming impromptu rap videos with strangers and trying to hand out dollar bills ($4, to be exact) to random men just for a “flex.”

“That kid’s not sick” is a popular refrain. From neighbors, acquaintances, classmates. Or “those doctors must be wrong, he’s such a lively kid.”

It doesn’t help that his disease is one no one’s ever heard of, that even Google search frequently confuses with a well-known disease that’s completely unrelated.

“He has ALD,” I told the mother of one of his classmates, trying to spare her from the painfully multisyllabic cerebral adrenoleukodystrophy.

“You mean ALS?”

“No, I don’t.”

At times I’ve contemplated just saying he has cancer to make things easier on us all. No one would look at him and suspect he’s ill. He’s not bedridden or hooked up to tubes and monitors (yet) and he’s weirdly upbeat for someone whose future is uncertain. Definitely, no one would suspect that his brain has already started to rot, slowly and imperceptibly, starting in the brain stem.

At a virtual “party” with his third-grade class before we set off to Minneapolis to begin the long, grueling process of a bone marrow transplant, classmates reacted to his appearance with confusion: “You don’t look sick, Aedrik!”

“I’m not,” he said as he melted into his chair, clearly unnerved by the thought that his peers were inspecting him through the screen for signs of illness.

“It’s not like that. I just need surgery,” he said.

“When are you coming back?”

“I don’t know,” he said to the ground.

The meeting ended with cheers of “Get well soon!” and “Hope you feel better!” and my 8-year-old son—by far always the smallest kid in his class, which he made up for with scrappiness and sass—turning the monitor away from his face as he protested, over and over: “I’m not sick!”

To a pair of neuropsychologists assessing his cognitive functioning days later—and looking at just how much damage the cerebral ALD has caused—he offered similar claims, peppering his responses with “bruh” to demonstrate just how unworried he is.

Then he challenged them to a dance-off in the hallway.

“You have an amazing child,” one of them said as we watched him attempt the moonwalk. “But he did confide in me that he’s scared he’ll die.”

“I know,” I said. “He knows it’s a possibility. He deserves to know it’s a possibility. It’d be worse to try and hide that from him.”

And it’d be naive to think a child doesn’t pick up on the loaded messaging behind rallying cries like, “Be brave,” and “I’ll pray for you.” Both of which have worn out their welcome.

With Aedrik managing to turn a sprawling neuropsychological research institute into his personal stage, we then met with the doctor I’ve entrusted with saving his life. I shook his hand and wondered idiotically if the quality of my handshake would affect the bone marrow transplant, if a forceful grip might be vaguely threatening but overall motivational, a limp one more effective in terms of sheer pity.

“Your son will do fine,” he reassured, noting that yes, while there are lesions in his brain stem, they are at least “very small.” And yes, he said, the disease will continue to progress throughout the transplant and for a time after, and that’s really no surprise because the “slow death of neurons has already begun.”

There was only so much he could say, and only so much I could ask, with my son sitting with his knees pulled to his chest nearby pretending to have no interest in all this talk about his brain stem and white matter and all the doomed neurons.

“Do you have any questions you want to ask the doctor?” I prodded.

He had only one: “Wanna see me get banned from Roblox?”

In the lobby, he enlisted the help of another boy his age to film an “epic” rap video that inexplicably paid tribute to bumblebees before descending into a vicious roast of an unidentified foe. When the boy’s parents pulled him away, Aedrik set his sights on a kindly looking grandfather with white hair who’d smiled at the boisterous rap spectacle.

“I’m going to give him some money,” he said, foraging in my purse for a crumpled wad of dollar bills that he promptly tried to give the stranger.

“Oh that is so generous of you! But I can’t take that, no, no,” the poor man said.

Asked why he was so determined to hand out cash, he rolled his eyes and said, “Mom, it’s a flex.”

Anything to avoid the reason why we were there. He would rather change the topic and get some laughs. Who wouldn’t prefer laughter over pity? And that was the alternative, a fact this 8-year-old got wise to pretty quickly after more than a dozen doctors visits in recent months.

He’s learned to preempt sympathy stares and condolence-coated clichés by cleverly deploying a performative bluster that’s equal parts obnoxious and charming.

Look at me with pity in your eyes again and I’ll throat-punch you with baffling dance moves.

Even I am not immune. After learning that his hair will fall out from the chemo drugs used in the transplant, I could see his bottom lip quiver.

“It’ll grow back, don’t worry,” I said. “But I’ll shave my head so we can be bald together.”

“Ew, Mom, you’d look so weird! No!”

We’ve used the time we have now while the transplant team searches for a donor to dye Aedrik’s hair purple and blue and red and green. And he’s given himself permanent marker tattoos that he says make him “look gangster.”

He insists he’s not at all fazed about having to say goodbye to his home, his pets, and his classmates in exchange for one great big unknown.

But sometimes the mask falls just enough to deliver an accidental coup de grâce. Like in our aggressively silent Minneapolis hotel room, in the dead of night, when my sleeping son is suddenly not. When he’s asking in his most wide-awake voice about the poor dying neurons. About whether or not the neurons can feel it when they die.

And then, “Can you feel it when your heart stops beating?”

No, I don’t think so, I say. You’re not supposed to be able to feel it. But I just did.