There are some conversations a parent never wants to have with children. And undoubtedly, the hardest is talking with a child about death — his death.
But that’s exactly the situation Bill Kohler found himself in with his son, Ayden. Seven months prior, Ayden had been diagnosed with diffuse intrinsic pontine glioma.
DIPG is a rare cancer that affects the brain stem. Patients rarely live for more than a year after diagnosis. Ayden’s case, though, was worse. He had not one, but two brain tumors — and he knew he was dying.
As a former Army medic who’d completed a tour of duty in Iraq, Kohler knew what it was like to lose people. But he didn’t know how to face his son’s demise. He tried to get Ayden into countless clinical trials after the diagnosis. But he’d only received rejection after rejection.
“I was a medic in the war, you know, and you fix things,” Kohler told The York Daily Record.
“And this was something I couldn’t even touch.”
So he made a pledge: If he couldn’t cure Ayden’s disease, he’d do everything he could to make his remaining days as rich and full as possible. That meant meeting WWE wrestling stars, chatting with celebrity chef Guy Fieri over FaceTime, hunting in the woods, and joining the team members of the York Generals semi-professional football team for a fundraiser.
“We looked at the day, and we looked at how we could make that day the best we could,” Ayden’s mother, Jennifer Zeigler, said to Public Opinion. “Every day.”
But there came a time when even that was too much. Ayden eventually reached a point where he couldn’t walk, eat, or even breathe well. That was when he said the words Kohler hoped he’d never hear: “Dad, I gotta quit.”
Kohler answered in the only way he knew how, saying, “I’ll make you a promise. If you’ve fought as much as you can and as hard as you can and you feel you fought that hard, I promise you it’s OK to quit.”
Ayden soldiered on, and a mere seven months and seven days after being diagnosed, his battle ended. He had only one final request.
“If people gather to remember me, I want them to dance, sing, and take group pictures,” he said. “If anyone asks how I want to be remembered, please say happy, funny, athletic, wise, fighter, caring, and selfless.”
Ayden may have left this life, but his legacy still remains. Donations made in his name to the Johns Hopkins Kimmel Cancer Center are continuing to fund the fight against DIPG.
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