Not if but when: After a diagnosis of brain cancer, a young dad and his family grapple with the uncertain time he has left

INDIANAPOLIS — Adam and Whitney Hayden waited for the doctor, both sitting with their right legs crossed over their left. They fidgeted their feet. They flicked them, bounced them, circled them. Whitney, 38, twisted a ring on her right hand. Adam, 36, locked his fingers around his cane. Every so often, he ran a hand over the scar on his head, where the baseball-sized tumor was pulled out two years ago.

They waited to find out if today was the day they would learn that the cancer had started growing again.

“It’s a slow-motion freight train coming toward me,” Adam said as Whitney drove them to the appointment.

That morning, they had had donuts to celebrate the third birthday of their youngest son, Gideon, who vaguely understood that his dad had a “brain boo-boo” and who was 9 months old when his dad was diagnosed with glioblastoma. In that 27-month span, Adam had blown past the median survival period of 15 to 18 months for people with his disease.

“Not if it recurs, but when,” Whitney whispered in the doctor’s pale exam room.

“That is what he told us from the very first day,” Adam responded, as if internalizing the eventuality would somehow make it easier to hear.

“Will today be the day?” she said.

His answer was firm. “No.”

“Oh!” she laughed, the tension momentarily fleeing her face. “I guess we’re done here!”

This was their routine: Every two to three months, they were back in this office, and Dr. Edward Dropcho, a neurologist at Indiana University Health, would tell them whether Adam’s latest MRI showed any cancer activity. So far, none of them had. But the Haydens knew that one ultimately would.

They couldn’t, however, know when that would be. It could be in three months, or three years, or today. So Adam and Whitney had been figuring out how to live when the closest thing they had to a certainty was that he would die, at some point, from his disease.

Since his diagnosis, he had waded into the world of cancer advocacy, spinning his circumstances into new purpose. But he and Whitney have had to balance that against enduring dreams that might go unrealized, the daily costs of living with cancer, and preserving the family life they had built.

How do you know how to spend the little time you