Advocate who offered window on living with brain cancer dies at 43

In 2018, I wrote a profile of a patient advocate named Adam Hayden. A few years earlier, at the age of 34, soon after he and his wife had had their third child, Adam was diagnosed with terminal brain cancer. I saw the story as a way to write about how people with fatal diagnoses navigate decisions on how to spend their remaining time. 

Adam died over the weekend, at 43. He and his family — his wife Whitney, and their three sons, Isaac, Noah, and Gideon, now 14, 12, and 10 — lived with his illness for nine years.

Adam and Whitney had always been clear-eyed about the future and the ultimate course of his disease. So when he entered hospice care at home in the Indianapolis suburbs last month, I proposed writing another story about him. 

I thought it would be illuminating to hear what he had learned about medicine through years of being a patient — where the system was built well, and where it fell short. I was interested not only in his experience of facing the kind of daily grind that comes with a cancer diagnosis, but the familial and financial challenges as well. But there was a selfish reason for my interest, too. Adam and I had kept in touch over the years, catching up every few months. I liked talking to him, and wanted to have more conversations with him. I knew I’d also get to talk more with Whitney, who is a riot. 

Adam was thoughtful, warm, and curious, a guy whose kindergarten teacher had once told his parents he had “a very gentle psyche.” He was also very public about his own journey as a patient. He wrote compelling op-eds, including for STAT, about his experience with cancer. He had trained as a philosopher and had dreams of becoming an academic. He didn’t need an outside writer to invoke the sword of Damocles that had been looming over him all these years. 

Adam seemed excited about another story. (“I’ll always yap,” he said.) And Adam, who had devoted himself to advocacy on behalf of people with brain tumors and who confronted his disease with an openness and vulnerability that made people feel so connected to him, knew that dying was a part of this condition. He wanted to be upfront about that as well.

“We’ve taken a bad situation and done good things with it,” he told me. “That’s the most enduring thing I’ve been feeling.”

That was on Nov. 20. He had just had his first appointment with the home health aide as part of his hospice care. It was nice to have more help at the house so Whitney had to bear less of it, he said. His beard had recently been bordering on biblical proportions, so the aide had given him a beard wash. That was nice, too. 

But Adam admitted that, even though he had thought about the end for so long and prepared for it, getting to this point was surreal. It felt like his body was giving out faster than his mind was, or was ready for. He had been losing more motor control on one side of his body, and it was difficult and frustrating to try to type with one hand at a time when he had so much he wanted to get out. 

“It’s a lot of adjustment in a hurry,” he said. 

That sword, he added, had dropped.

Adam and I had planned to keep chatting for the follow-up story, but soon after we spoke that day in November, his condition started deteriorating. A series of seizures left him confused, less able to speak, and in need of more sleep. We weren’t able to talk again. 

Adam was diagnosed with glioblastoma in 2016, but he outlived the reclassification of his disease. He had what’s known as an IDH mutation in his tumor, and these IDH-positive cancers were separated out from glioblastomas in 2021, becoming what are known as grade 4 IDH-mutant astrocytomas. People with these types of mutations generally live longer than those with glioblastomas without them, which helps explain why Adam blew past the median survival period for glioblastoma by years, even if his fate was always going to be the same.

He was grateful for those extra years — a stretch of time spent with his family and his writing and his friends. It was more time for simple things that he felt lucky to witness, like walking his boys to the bus stop in the morning, even if his oldest started calling him “Boomer” when he turned 40. When he had a bad day — like when he had to spend hours recovering from a seizure — he tried to remember that other patients and their families’ wished they had been around for more bad days. 

Adam had started being public about his illness early on. In countless social media posts, blog posts, and TikToks, he provided updates, pulled back the curtain on the daily experience of living with cancer, and embodied the empathy that he so deeply felt that people should extend to others. 

“Hey fam,” he would often say at the start of his videos, as if he were about to unveil a new pair of sneakers instead of providing news on the disease that was killing him. And even as the updates grew more serious in recent years, as he faced recurrences, he maintained his lightheartedness. “We don’t know what we’re seeing!” he said one day about a potentially worrying scan, only then to start laughing, a bashful chuckle that evoked an “aw shucks” attitude.

Still, living so long with a terminal illness — and the costs and stresses that come with it — was exhausting. Through his work in the brain tumor community, he got to know many fellow patients, and then watched as they died. Every few months, he had another brain scan, and knew that one would inevitably be bad news. “Scanxiety” was a term in the cancer world for a reason. 

“I’m an energetic and positive guy, but sometimes you just have to say, ‘man, it’s just tough, it’s just tough,”’ he said last year as he grew emotional talking about the roller coaster of undergoing chemotherapy once again, one of the few times I saw him allow himself to publicly display the weight of his struggles. 

When Adam started hospice care, it was the first time in nearly a decade that he didn’t have a scan booked in his calendar. It was a relief, he said, even if it only came because there was no point anymore in surveilling his tumors. 

Adam and Whitney had always maintained, in seemingly unimaginable ways, their humor around his illness. In recent weeks, they found ways to laugh with the boys about his nascent incontinence. And hospice seemed like the perfect excuse to throw on “The Big Lebowski” and drink White Russians — who cares if it was 10 a.m.?

Like I said, Adam didn’t need an outside writer to try to put a frame around his situation or to spell out what he was facing. He was more than capable of that. So I’ll end with Adam’s words, which Whitney said were some of his last when he was still conscious. 

“I just want everyone to be kind to each other.”