7 Years After Man's Death, Hero Best Friend Raises Funds To Battle Granddaughter's Illness

SOUTHOLD, NY — July 17 will mark seven years since Southold's Peter Johnstone died suddenly after a fierce, but brief, battle with an aggressive cancer that stole his life in only four short weeks.

He died when he was only 59 years old — and Monday, June 26, would have been his 66th birthday.

To mark the day, his widow Gayle, daughter, Jennifer Koke, and her twin brother Peter, along with Johnstone's beloved grandchildren, always gather at the beach, near the water that he cherished so deeply, tying messages of love to balloons and sending them off with love, so much love, into the bluest of skies.

They are joined by Johnstone's friend Tom Shearin, who, after Johnstone's death, took up the mantle of his fishing buddy's determined quest to find a cure for the cystic fibrosis that Johnstone's granddaughter, Camryn Koke, has battled since birth.

Johnstone and Shearin had shared a passionate love of fishing and for years, the two anglers shared happy days out on the water. Perhaps their best fishing trip of all took place right before Johnstone was diagnosed.

"They had the most amazing trip that day," Jennifer Koke said. "They caught so many fish."

But that day, Shearin said, was the beginning. "He felt sick that day," he said.

Gayle said her husband had been having back pain for some time but, being a contractor who worked long hours, they'd believed it was just a work-related back injury. His work, including home renovations, was so well-known for its excellence and fine craftsmanship that his friend's nickname, Shearin said, was "Custom."

After his friend lost his battle with cancer, Shearin said he wanted to do something to help Camryn, the little granddaughter to whom Johnstone had been so devoted. Koke said her father was at their home every day with donuts, candy and love for Camryn and her other children.

"He used to tell me, 'It's breaking my heart, watching her go through this,'" Shearin said. "The best way to remember him, to honor his memory, is to go out and help them find a cure."

The first year after Johnstone's death, Shearin organized a memorial fishing trip with his friends and family, a tradition he's upheld every year since, with the last trip on June 2.

And not only does he do that remarkable trip, but Shearin has taken his generosity and kindness one step further, rallying his fishing buddies, through a 50/50 on the boat, to donate funds to fight cystic fibrosis.

"He always does some sort of raffle on the boat to make a donation in my dad's name to the Cystic Fibrosis Foundation. Every year he does more and more. This year he sold 2,000 raffle tickets. He raises around $1000 to $2,000 dollars every year. It means so much to us just that he does the fishing trip for my dad, and when he adds the donations to help Camryn, it means the world," Koke said.

What makes his open-hearted generosity even more meaningful is that Shearin was someone Koke said she never would have thought would be the person to step up to do what he's done; the men, while friends, had been just fishing pals.

"He wasn't the person I would have expected to do this," Koke said. "But sometimes people just surprise you and change your life forever."

But for Shearin, the fundraising in his friend's name to help the beautiful little granddaughter he'd cherished so much was a natural. "It's about her," he said, smiling fondly at Camryn in the Koke's home.

As for Camryn, now 12, she's learned a forever life lesson from Shearin's kindness. "It makes me feel happy, that someone's doing this for you," she said. "It's also made me want to do the same thing for someone else, to do random acts of kindness."

And it's not the only time Shearin's been generous; during a Thanksgiving drive at their church, while others donated $1 or $2, Shearin came forward with $100, Camryn said. He did the same with her Girl Scout troop, handing the kids $100 to get pizza, she said.

Shearin, Koke said, also won another, separate fishing tournament with his family and donated all the proceeds, around $1,700, to cystic fibrosis research, in honor of Camryn. Shearin said his family has embraced the fundraising efforts, too.

"Who knows when that dollar might be the dollar that makes the difference?" he said.

And, said Koke, every dollar counts. Because cystic fibrosis is a rare disease — approximately 30,000 are battling the disease in the United States — federal funding for research has been difficult to secure, and all of CF's research has come from private donations, she said.

According to the CF Foundation, cystic fibrosis is "a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time." Those with CF have a defective gene that causes a thick, sticky mucus in the lungs, pancreas and other organs.

The Koke family has made a tremendous commitment to fighting back, organizing fundraisers locally and participating in the "Great Strides" Cystic Fibrosis Foundation Walk at Indian Island.

And great strides have been made, Koke said: Camryn is currently on a new drug that costs $300,000 per year and soon, a breakthrough, gene therapy treatment that eliminates the defective DNA, now in clinical trials, might be available.

Still, the year has been difficult for Camryn, with one surgery already and a second scheduled for July.

This year, the Koke family and their team raised $10,000; they have raised more than $100,000 so far with their efforts. Shearin's donations are included in that total, Koke said.

On Monday, his family and Shearin gathered in Koke's beautiful home, where a painting Johnstone created of boats out on his beloved water hangs proudly over the fireplace.

"He loved his trains, he loved his fishing, he loved his family and friends," his wife Gayle said.

Love for the water ran deep, his daughter said.

"Before he died, he said, 'Promise me you'll teach the kids everything about the water, because that's what's most important to me,'" Koke said.

He loved the water so much that his ashes were sent adrift at Buoy 11, his favorite fishing spot, Koke said.

Today, Camryn's holding tightly to that legacy — she told her parents that she'd one day like a boat herself.

The love he showered upon his grandchildren continues to nurture them, Koke said. "He was really special to me as a dad, but he was just the most amazing grandfather to my kids."

Her father, she said, was always smiling. And, she added, he was the "best hugger," hugging everyone he cared about.

His friend, Shearin said, was not only a gifted artist and painter, but he also was great at fixing things, creating things, and good with his hands, able to build things of lasting beauty.

Mike Koke, Jennifer's husband, said his father in law was the first to lend a hand, offering to help anyone, an expecting nothing in return. "There aren't too many people left like that," he said.

Most of all, his family and friends agree, Johnstone loved children, tossing lollipops to kids in other boats while on the water. His love for his grandchildren was profound, so deep that when he lay dying, and Koke brought Camryn to see him one last time, he managed to sit up, despite being desperately ill, so he could thumb wrestle with her — and she'd have a happy memory to carry with her forever.

Each year his grandchildren return that love tenfold, tying notes to the balloons released in his memory, notes telling their grandfather everyday updates about how they're fixing the pool, and messages of love, hoping he's "having fun in heaven." One year, his granddaughter worked furiously to tie a clamshell to the string, so her grandpa would have a piece of the water he loved so much.

Reflecting on his mission to raise money for cystic fibrosis in his friend's memory, Shearin said, "He used to tell me, 'It breaks my heart, to see her go through this. We have to find a cure.' This was among friends on a fishing boat. It moved me," he said. "It's just what he would have wanted."

Of her dad, Koke said, "I just hope he's really proud of us. We try to make him proud every day."

Smiling, she said, of Shearin, "He's a hero."