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Column: Hinsdale’s Brooks Tonn died of a rare childhood cancer when he was 10. His family is helping other kids with cancer play sports.

Chicago Tribune - 1/31/2020

Brooks Tonn had blue eyes like his grandma’s.

Hers light up when she talks about him.

“He was so polite,” Nancy Keenan said. “He was always the first to get up and open the door, get your groceries out of the car. You never even had to ask him.”

His eyes capture you from the photos that fill his childhood home -- photos with his three siblings at the beach, photos with his football team, photos when he was a baby and a toddler and a fourth grader, a photo of him making his two hands into the shape of a heart, his dirt-filled fingernails revealing a long, baseball-filled day at the park. He texted that one to his mom while she was out of town for a couple of days.

Brooks was diagnosed with rhabdomyosarcoma, a rare cancer that forms in the body’s soft tissue, on Dec. 27, 2016. He was 9 years old. His mom noticed some swelling in his face and after visits to the pediatrician and ear, nose and throat specialist and, finally, the hospital, a CT scan revealed a tumor in his sinus cavities that had metastasized into the lymph nodes in his neck.

“You get the news and you just, you can’t even see,” Nora Tonn, Brooks’ mom, said. “You’re just in an out-of-body state.”

Doctors at Ann and Robert H. Lurie Children’s Hospital of Chicago treated Brooks’ cancer with chemotherapy and radiation. Brooks and his dad, Rob, would take the 7 a.m. Metra from Hinsdale to Chicago to start his chemo rounds. Nora would get the other three kids ready and out the door to school and then head downtown with one of her two sisters to join her husband and son.

That lasted through summer of 2017.

“He played 57 baseball games that summer,” Keenan said.

“One game, he had chemo that morning, got to baseball, threw up in the bushes, went in and played,” Nora Tonn said.

“That’s the day he hit a grand slam,” said Keenan, who is Nora Tonn’s mom. “His teammates carried him off the field on their shoulders.”

Brooks also played football. His team was the Hinsdale Falcons. He walked up to his coach on the first day of practice and said, “Hey! I’m one of the quarterbacks.” His coach said, “Is that right.”

One day during the summer that Brooks was undergoing chemo treatments, his whole football team gathered at one boy’s house. They filled the living room and faced the TV, where Northwestern football coach Pat Fitzgerald filled the screen. He had a recorded message for Brooks.

“We’re so inspired by you and your toughness and your grit and your ability to persevere and fight through tough times,” Fitzgerald said.

Afterward, the team headed to the backyard and had their heads shaved. Every last boy went bald like Brooks.

“His friends are amazing kids,” Keenan said. “They see me in town now and they come up to me and give me hugs. This whole town has been amazing.”

Brooks finished treatment on his sister Scarlett’s seventh birthday. A few weeks later, Labor Day weekend, he was complaining about severe pain in his legs and back. An MRI revealed cancer in his spine and throughout his bones.

“A little cell got away and outsmarted the chemo,” Nora Tonn said.

Brooks died Dec. 1, 2017.

“Scarlett will ask, ‘What do you think Brooks would look like now?’” Nora Tonn said. “It’s hard for me when I see the other kids because they’re all growing up. And he’s not here to do that.”

Hinsdale is filled with signs of Brooks. In the park across from the Tonns’ house, cups spell out BROOKS STRONG in a chain-link fence. Friends of the Tonns often do the same with cups on the fence of a pedestrian bridge crossing Interstate Highway 294. Lane Elementary School, which Brooks attended, wrapped every tree on school grounds in turquoise ribbons after he died. The Tonns took the ribbons down after four months and recycled them into a bench that sits near the school. Trees with Brooks Strong memorial plaques dot the town’s public spaces.

Brooks Strong was a rally cry while he was alive and fighting. It was a statement and a wish. For his friends. For his parents. For his grandparents. For his oldest brother, Hunter, who plays football, for his other brother, Griffin, who’s an artist and violinist, for Scarlett, the only girl on her travel baseball team.

Close to a year ago, Brooks Strong also became a foundation. Nora and Rob Tonn launched a 501(c)(3) nonprofit to raise money for two goals.

First, to fund pediatric cancer research.

“We plan to give grants for research in the area of rhabdomyosarcoma and related cancers,” Rob Tonn said. “The kind of creative, outside-the-box stuff that we want to finance is being done in a handful of places and those are the folks we’re looking really hard at supporting.”

Their second goal is to cover the costs of youth sports or other extracurricular activities for kids who have cancer, whose parents are struggling to cover their medical bills and don’t have the money to send to lessons and team fees and equipment.

They held three fundraisers last year: an all-day golf tournament, a baseball tournament and a Belly Up for Brooks fundraiser at Harry & Eddy’s in Hinsdale. This fall they’re planning to add a family softball tournament. Nora Tonn also makes jewelry and donates the proceeds to her foundation.

Families can apply to the Brooks Strong Foundation for $1,000-per-child scholarships to help defray the cost of the activities that weave joy and community and celebration into their lives, even as they struggle mightily against a cruel and relentless disease.

Last month, they granted their first scholarship. It went to a 15-year-old baseball-loving boy named Dylan Provenzano.

“He got his gear yesterday,” Sam Provenzano, Dylan’s mom, told me Thursday. “He’s the happiest kid around.”

Dylan and Brooks were in the hospital together. Dylan was 12 at the time. He was also diagnosed with a sarcoma, one month after Brooks was diagnosed, so the families often ran into each other during treatments at Lurie.

“Brooks always reminded me of a younger Dylan,” Provenzano said. “They could’ve been siblings.”

She noticed when Brooks was no longer showing up for treatments and she started asking other families if they knew anything.

“When I learned he passed away, I was extremely sad and just broken for his family,” Provenzano said. “I thought, ‘I’ve always got to keep this kid’s memory going.’”

Provenzano, who lives in Park Ridge, also hosts fundraisers for pediatric cancer research. They mostly involve baseball. She works with the Chicago Dogs in Rosemont to dedicate a night to pediatric cancer research. She plans baseball tournaments that she calls “Angels in the Outfield.” Through Facebook, she found Nora Tonn and asked her if she could display a photo of Brooks at some of her fundraisers, just to bring his spirit into the events. Nora Tonn said of course.

“It’s a very hard thing as a mom of a kid who is still surviving and thriving,” Provenzano said. “They can’t hug their kids anymore. You just hate that they’re in that position. You kind of have a guilty feeling.”

But Dylan -- and kids just like him -- are exactly who the Tonns envisioned when they launched their foundation. Exactly whose lives they want their fundraising to enrich. Exactly whose lives they want to save.

And Dylan’s baseball was going to be tough to finance this year. He’s two years out of treatment, but the medical bills continue to pile up. He needs physical therapy three times a week. He needs scans and bloodwork every three months. The Provenzanos also have a 19-year-old daughter at Oakton Community College, and they want to help her pay for her classes.

A friend of Provenzano’s, another mom whose child has cancer, told her to apply for one of the Brooks Strong scholarships

“She said, ‘Sam, if he’s on your mind, you need to reach out,’” Provenzano said.

On Dec. 20, she heard back from Rob Tonn.

“I just got chills when I was reading his email,” Provenzano said. “Not just because they said yes, but the way he worded it. It was so kind and so heartfelt. He said, ‘Brooks would be thrilled to help one of his brothers in arms.’”

She started to cry as she told the story.

“It just shook me to my core because that’s exactly what they were, you know?” she said. “These two kids. Fighting. And fighting hard.”

The grant covers Dylan’s equipment and next six months of travel baseball.

“He’s so happy, and we can breathe,” Provenzano said. “We’re forever indebted to them. Anyone who makes your kid happy, you owe them the world. It was so selfless of them and just extremely kind that they took their hurt and turned it into good.”

Last season was the first time Brooks’ Red Dog baseball team had to play without him. The Tonns still went to the games and cheered on the kids. Nora Tonn handed out Brooks Strong awards at the end of the season. Not for most home runs or most RBIs.

“We gave them out for kindness and courage and being an overall good sport,” she said. “A good person. A good human.”

Brooks was a people kid. He lived in search of a game to join and he loved a crowd.

“When we came home from his first night of chemo, he said, ‘Can we do something with the cousins? Can we go out to dinner?’” Nora Tonn said. “He always wanted to be surrounded by people. I think he knew his days were short and he had to fill them up.”

And now they fill people’s days with his spirit.

“If you sit back and do nothing, nothing gets done,” Keenan said. “I’d rather have had him for 10 years than not at all because he enriched all of our lives. And he’s famous! He was going to be famous if he lived -- he wanted to play first base for the Cubs like Anthony Rizzo -- and he’s famous now. Maybe more so.”

Nora Tonn and her mom got matching tattoos on their wrists: “Brooks” in blue letters, with a turquoise heart underneath.

Pain, but also beauty. Permanent, but likely to change and fade and shift a little over time. Shared.

“It’s mind-blowing,” Nora Tonn said.

The loss. The grief. The power to channel that into helping another child, a lot of other children, hopefully. The comfort of a community rising up and circling around to help.

“I feel such glory,” Nora Tonn said, “that we can help another boy play baseball. When I help other people, I can just feel Brooks. I feel him with me.”

So can the rest of us. What a generous gift.

Join the Heidi Stevens Balancing Act Facebook group, where she continues the conversation around her columns and hosts occasional live chats.

Twitter @heidistevens13


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