Paige's Butterfly Run, from above: Thousands of runners and walkers amid "A Taste of Syracuse." Credit: Courtesy of Chris Arnold

Bryan Wilbur was a 17-year-old on the Liverpool High School football team, a teenager figuring he was dealing with nothing more serious than the normal aches and pains of growing up, when he was told his family doctor needed to see him, fast, at the North Medical Center on Taft Road.

Like all teens, Wilbur envisioned himself as an “Iron Man,” he said, “and nothing bad could happen to me.” Instead, on that autumn morning, he and his parents sat across from Dr. Armand Cincotta — the same family doctor who had cared for Wilbur’s father and grandfather — and listened as Cincotta told them an ultrasound showed this high school kid had testicular cancer.

Wilbur can still feel those moments of raw this-can’t-be-happening emotion in the room. Everything began moving really fast — “You feel alienated,” Wilbur said of the way a teen, new to cancer, responds once you step back into the everyday world — and it wasn’t long before he had surgery to remove the tumor. He was a captain of the football team the following fall, seemingly recovered, when intense pain in his back demanded more tests.

He had an even larger mass behind his kidneys, one that required swift surgery and chemotherapy.

“One day you’re a normal kid,” Wilbur said, “and the next day you’re not going to school and they’re making a plan to try and keep you around.”

Paige Yeomans Arnold Credit: Courtesy of the Arnold family

Sixteen years later — as happens every June — Wilbur and his wife Lauren, joined by their two young sons, will be among the volunteers Saturday morning at the “Courage Corner” at the Hanley Federal Building Plaza, a little retreat that underlines the entire meaning of Paige’s Butterfly Run in Syracuse, a race held as part of the annual explosion of downtown energy for “Taste of Syracuse.”

The 9 a.m. run — it’s not too late to sign up — was co-founded by Chris Arnold and Ellen Yeomans in tribute to their daughter, Paige, who died in 1994 of leukemia, just before she was scheduled to begin third grade. Jennifer Huntley, executive director of Paige’s Butterfly Run nonprofit organization, said that over the years the event has raised beyond $5 million — both to support research into childhood cancer and to provide multiple forms of immediate comfort and support for children and their families going through treatment at the Upstate Golisano Children’s Hospital.

Wilbur — a project manager whose cancer has been in remission for years — vividly remembers how young cancer patients at Golisano routinely received takeout meals, “really good stuff” from local restaurants, courtesy of the Butterfly Run. In a larger sense, what Wilbur recalls is the kindness and confidence he witnessed in an entire network of Upstate Golisano care providers, from the warmth of Dr. Jody Sima, his pediatric oncologist, to the welcome he was given by receptionists at the desk every time he walked in the door.

Like his wife Lauren, Wilbur said the couple’s annual presence at the Courage Corner is a statement of gratitude, as well as an opportunity to contribute support and solace to an ever-growing community of youthful patients who’ve experienced treatment. Arnold, the co-founder, said race organizers created the corner maybe a decade ago. They were moved by how many young survivors and their families routinely attended the race, which is expected to attract more than 1,200 runners and walkers this weekend.

“We wanted a special place for them,” Arnold said of children experiencing treatment, and those not far beyond it – as well as for families who have lost daughters or sons to cancer. The shady retreat of the Courage Corner provides a sense of refuge — not to mention plenty of drinks and snacks. It also offers children the chance to ring a mobile “bravery bell,” symbolic of triumph and resilience in the long journey through cancer.

Bryan Wilbur and his future wife, Lauren, at a high school prom. Credit: Courtesy of Lauren Wilbur

The bell is typically brought there by Brooke Fraser, a longtime hematology-oncology nurse practitioner at Golisano who annually joins her close friend – Upstate pediatric oncology pharmacist Sarabeth Wojnowicz – in volunteering at the race.

“I love these kids with all my heart,” said Fraser, who’s watched as dramatic advances in treatment created an 80 percent statistical chance that a child with cancer will survive for at least five years and often go on to a long life, according to the state Department of Health web site – which notes that roughly 1,000 children in New York begin treatment every year for some form of cancer.

Fraser said she has seen “hands down” how the benefits of the Paige’s Run directly help those families – not only through contributions to research, but through direct assistance with such quiet burdens as mortgages or car payments at times of financial duress.

Many of the young patients Fraser met over the years remain in touch. She said her passion for the field — and her longevity in the profession — is the bedrock for her connection with these children. She often receives notes when they graduate from college, or get married, or even when a young hunter bagged a first turkey, as happened recently.

“Knowledge is comforting,” Fraser said of what she brings to these girls and boys, a gift of particular benefit for families in the early weeks and months of confronting a frightening unknown.

Butterfly Run co-founder Chris Arnold with passionate annual volunteers Sarabeth Wojnowicz and Brooke Fraser. Credit: Courtesy of Sarabeth Wojnowicz

In a sense, the Butterfly Run mirrors Fraser’s own experience: Through sheer consistency and commitment, it has grown into a trusted respite and and resource. At the race, Fraser and Wojnowicz often follow a routine they love to do for young patients at Upstate. They wear matching outfits of bright colors or polka dots, as a way to delight children.

Wojnowicz said she felt immediate and powerful affinity for Arnold and Yeomans, and how they responded to losing Paige. When Wojnowicz was a child, her sister Rebecca died at 13 of a genetic form of sudden cardiac arrest. Wojnowicz watched with admiration as her parents found solace by elevating their own love and concern for others, and she saw those same qualities in Yeomans and Arnold.

“There are really no words,” Wojnowicz said, trying to summarize the courage and soul of parents who lose a child – then dedicate themselves, over the long run, to the benefit of strangers facing similar trials.

Beyond that, from the time she was a girl, Wojnowicz always associated butterflies with her sister — and it all comes together every June in a race with that theme, where she and Fraser provide a welcome at the Courage Corner.

On Saturday, Lauren Wilbur will be there early. Her husband Bryan will meet her at the race a little later, for a reason that is particularly triumphant to their family: He’ll bring their young children, 20-month-old Connor and 7-month-old Mason.

The birth of the two kids was no sure thing. After Bryan’s treatments, there was uncertainty about whether the Wilburs could ever have children. They tried for five years, without success, before Connor was born through in vitro fertilization – a powerful breakthrough that led the Wilburs to create “Kids like Connor,” a nonprofit that supports other families facing the same struggle.

Lauren and Bryan Wilbur and their children, Connor and Mason. Credit: Courtesy of the Wilbur family

Lauren and Bryan became close friends in high school. She was there to support him throughout his teenage treatments — they began dating two weeks after graduation — and what she saw during those years, as she watched Bryan navigate “the world of cancer,” inspired her to become a pediatric oncology nurse.

The importance of the Butterfly Run, she said, is that it identifies beautifully “where the holes are, where the needs are” for families suddenly confronted with an unexpected crisis. Bryan Wilbur said the memory of those early days of fear never wears off, and he is grateful for the chance to provide a simple message at the Butterfly Run.

For anyone seeking hope, he said: “I’m proof of it.”

Read more of Central Current’s coverage

Sean Kirst is a columnist with The Central Current. He has been an Upstate journalist for more than 50 years. He held his first reporting job as a teenager and worked for newspapers in Dunkirk, Niagara...