Finally, on a warm early evening in August 2013, inside a small-town hospital in Michigan City, Indiana, I watched in horror as Beau endured a grand mal seizure. It confirmed that more sinister forces were at work. The day before, Beau had made the annual eleven-hour car trek from Delaware with his wife and kids to vacation with me and my family on Lake Michigan, not far from where my then-wife, Kathleen, grew up. I’d arrived at the summer house that day after spending the weekend serving in the U.S. Navy Reserve in Norfolk, Virginia, and was changing clothes to meet the whole crew at Kathleen’s cousin’s house, a block away, when I spotted Beau and our families walking back up the driveway. Everyone around him was in a panic.
Beau insisted he was fine. But he was clearly struggling, hunched over and unstable. We drove him to the local hospital, where technicians were about to perform an MRI when he had his seizure. It was terrifying, like something out of The Exorcist. The violence erupting inside his body was being expressed in convulsions and contractions; you could almost literally see the storm raging inside his brain. It seemed to last forever. I felt helpless: I wanted to absorb my brother’s pain, yet there was nothing I could do.
Nothing.
When the storm finally passed, Beau was rushed by air ambulance to Northwestern Memorial Hospital in Chicago. His wife, Hallie, and I followed in my car, racing the whole way, making the seventy-minute drive in half the usual time. Beau had undergone an MRI by the time we arrived. The doctor showed us the images.
I was relieved. I’d looked at so many brain images since Beau’s stroke that I thought I knew exactly what was going on.
“That’s just the infarct,” I said, referring to the part of the brain damaged by the stroke. It showed up as a dingy shadow.
The surgeon, one of the best in the country, let out a sympathetic sigh.
“Hunter,” he said solemnly, “I think it’s a tumor.”
“No way,” I insisted. “It’s exactly… I’ve been looking at these images for over a year now. That’s where the stroke occurred—exactly where it occurred.”
“Well, I don’t know about that,” the surgeon said. “But this looks like a tumor.”
We flew Beau home and took him to Thomas Jefferson University Hospital, close by in Philadelphia. The tumor was confirmed.
A few days later, Beau and I boarded a plane for Houston to meet with a brain surgeon at the University of Texas MD Anderson Cancer Center.
Glioblastoma multiforme is a mean, relentless horror. Doctors told Beau after his first surgery that it had been successful, that they’d removed all of the tumor they could see, but that it was the most aggressive type of cancer—a worst-case scenario. Nobody gave Beau the numbers—the odds—but I asked about them later when it was just Dad, me, and the surgeon in a room. I then looked it up online to make sure the survival rate he gave us was correct: less than one percent. Patients generally live from fourteen to eighteen months after diagnosis, and few who last longer than five years live with what’s considered a bearable quality of life.
It was a death sentence.
I went quickly from disbelief to anger, sure that doctors had missed the tumor back when they’d determined he’d suffered a stroke. Would it have changed outcomes if they’d found it earlier? That’s a different, unanswerable question.
Now Beau and the rest of us found ourselves in the same irresolvable position many patients and families find themselves in after such a long-odds prognosis. We doubled down on what was almost surely a losing hand. Incapable, or unwilling, or just too damn scared to do otherwise, we adopted a fighting optimism about whatever procedures Beau’s doctors recommended. Over the next twenty-one months, those recommendations included two more major brain surgeries, chemotherapy, and brutal radiation treatments—all, in the end, to no avail.
If I had to do it over, I never would have agreed to put Beau through the standard protocol, especially the radiation. Given the infinitesimal chances of his coming through it anything like he was before, and the pain and deficits it inflicted—difficulty talking, inability to put on shoes—it was almost barbaric. Yet in that moment, when you’re in the hands of such brilliant, dedicated, and empathic professionals, even the slimmest chance seems worth pursuing.
Our final recourse was a high-risk, uncertain-reward option: the injection into his brain of a biological agent being developed by a research oncologist with funding from MD Anderson. We knew the chances of it reversing his cancer’s advance were less than de minimis, yet we hoped for a miracle.
Hoping for a miracle is an oxymoron. By definition, a miracle is something a rational person can’t rely on. So it takes a kind of dogged compartmentalizing to divorce yourself from rational thought at a time when you’re immersed in nothing but calculated and rational decisions. In Beau’s case, that meant everything from scheduling his procession of doctor’s appointments to monitoring his diet to determining who was going to help him get dressed. Those banalities soon piled up into a kind of makeshift altar to the mystical, the magical, the unaccountable. We knew this procedure was a last resort—a true Hail Mary.
The time leading up to that final desperate measure, and the relatively short period that followed, also would be the last sublime stretch I spent with my brother.
Beau and I flew to Houston together the week before that last surgery at MD Anderson. We stayed in a hotel suite about a mile from the hospital, trekking there each day for the battery of tests and medicines needed to prep him for the procedure. Mom and Dad would arrive the day of the operation.
Beau had lost function to the degree that I had to put his socks and shoes on him, help him
