Saying goodbye: As son dies, dad squeezes a lifetime into months
UPDATE: Less than a month after sharing their story, 10-year-old Ayden Kohler passed away. He lost brain function Tuesday night and died Wednesday morning. .
Bill Kohler placed the crossbow in front of his 10-year-old son.
"All right, heartbreaker, are you ready?" Kohler asked him. "Aim small, miss small."
The blond boy lined up his shot, his arm wobbling slightly as he steadied it against his chair.
He took one breath. Then he squeezed the trigger.
Thwack.
The arrow pierced the lungs of the paper hog on a target at the end of the range at Xtreme Archery.
A small smile spread across the boy's face — just for a moment — and then it was gone.
They packed up the bow. Kohler steadied the boy and they walked the few steps to his son's wheelchair.
***
At 9 years old, Ayden Zeigler-Kohler was constantly moving. Football, basketball, wrestling — there wasn't a sport he didn't love to play. Then in August of last year, without warning, everything changed.
He was in the middle of football practice when he collapsed. At the hospital, his dad was told it was a concussion. But Ayden quickly deteriorated, losing motor and verbal skills. Eventually, doctors found the tumors.
Ayden has two of them: one in his cerebellum, the other in his brain stem. It's called diffuse intrinsic pontine glioma, or DIPG.
It's not a forgiving cancer.
Doctors told Kohler his son had eight to 12 months to live. That was about seven months ago.
***
Kohler, an Army veteran, was broken when he came back from serving in Iraq. He was drinking a half a gallon of Captain Morgan every day just to sleep. Then Ayden was born.
"My whole world changed," Kohler said. "He saved my life."
The two are inseparable.
When Ayden was diagnosed, Kohler would lay his hands on his son's head, willing the cancer to leave his little boy and enter him instead — wanting to save his son's life as Ayden had done for him.
He threw himself into finding a way to make Ayden better. Between doctor's appointments, speech therapy and radiation treatments, he spent hours at their Springettsbury Township home applying for every clinical trial he could find.
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Again and again, he was denied. There was nothing they could do, the rejection letters said.
"I was a medic in the war, you know, and you fix things," Kohler said. "And this was something I couldn't even touch."
He'll never give up hope, never stop fighting for his son, he said.
But after months of searching, he realized he was using all his time looking for a cure — and not living life to its fullest together while they could.
***
"We're trying to cram a lifetime into a few months is what we're trying to do," Kohler said.
The community has rallied around Ayden. He's been a special guest at football and basketball games and went on a fishing trip in Florida. This winter he shot his first buck.
"It was a perfect shot," Kohler said. "That was a proud dad moment right there."
Hunting and being out in the woods are where Kohler and his son find moments of peace. It's those moments they're trying to hold on to.
Ayden lives with his dad and his dad's wife, Cathy. But they've opened their home to Ayden's mother, Jennifer Zeigler, as well. They want him to spend as much time as possible with the people who love him.
As his health declines, it's harder to do the things Ayden loves. But they try.
A chair with an extendable arm supports the crossbow and helps to stabilize Ayden's arm. He'll use it on a hog and ram hunt at the end of February with his father in Marietta.
Recently, Ayden's social worker helped him create a wish book — a way to open dialogue about what Ayden wants for his life. It's helped Kohler to make sure he's doing whatever he can to give some choice to his son, who's had so many choices taken away from him.
They're going to see WWE in Hershey, and they've got tickets for a Wizards game in March. But it's hard to plan that far in advance.
A question in the book prompts: "If I am very sick and may die I wish to be:"
Ayden finished the sentence: "in the woods."
***
As they pulled into their driveway after archery practice, Ayden could see kids playing at the school playground. He started to cry.
He missed running and playing and just being a normal kid, he told his dad.
Later, in his bedroom, Kohler tried to comfort his son.
"What if I don't get better, and die?" Ayden asked through tears.
"No matter how this turns out, son, I will be by your side," Kohler said. "The whole way."
A GoFundMe account to help support Ayden and his family can be found by searching Ayden Zeigler-Kohler fund on GoFundMe.com.
