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Sean Kirst: Three years into cancer, 'Baby Shawn' to again lead a march

April Robertson just needed to get out. She and her husband Brian made a fast decision to travel to Niagara Falls from their New Hampshire home. Robertson figured they might as well go to the Canadian side, because crossing the border would make it feel even more like an escape.

This was a year ago, almost to the day. The couple climbed into their truck and drove eight hours, trying to keep their thoughts away from what Robertson’s doctor told her that week. Her multiple myeloma, a form of cancer, seemed to no longer be responding to treatment.

They drove hard until they got to the Rainbow Bridge, where Brian suddenly had a realization.

He had forgotten his passport. They could not get into Canada.

“I could have killed him,” Robertson said. They stopped and booked a hotel room in Niagara Falls, N.Y.

That moment would lead to an unlikely connection. Due to that forgotten passport, Robertson and maybe two dozen others are riding motorcycles to Niagara Falls this weekend. They will take part in "Golden Steps 4 Pediatric Cancer Awareness," a 6:30 p.m. walk and fundraiser Saturday at Niagara Falls State Park.

The walk will be led by Shawn Kennedy, a 7-year-old from Niagara Falls nicknamed "Baby Shawn." Three years ago, his mother, Nicole Vathy, noticed that Shawn had started twitching while he slept. After extensive testing, she learned her son had a brain tumor now described as an "atypical DIPG," or diffuse intrinsic pontine gliomas.

Brian and April Robertson, riding to Niagara to walk with "Baby Shawn." (Family photo)

The word "atypical" is critical. At first, under MRI evaluation, the tumor resembled the typical presentation of DIPG. Doctors at St. Jude’s Children’s Research Hospital in Memphis say the survival rate for children with the typical form of the tumor – after three years – is essentially zero.

Yet Dr. Santhosh Upadhyaya, a neuro-oncologist at St. Jude’s, said Shawn's variation is “a very rare tumor.” While the tumor is in the brain stem, it has stopped growing. It could change tomorrow, his doctor said. Or, in the best of possible situations, it might not change not at all.

That means each day, to Shawn's family, takes on indescribable meaning. After all the testing and biopsies and radiation treatments, the child is still going to school, and shooting baskets at a hoop on blacktop outside his house, and riding his bicycle up and down 20th Street.

Vathy, like Robertson, has learned the definition of perspective.

This month, for instance, she received notice that she and her seven children are being evicted from their Niagara Falls home of nine years. They were going month-by-month, without a lease. While a city court judge ruled they need to move by Oct. 1, Vathy's voice was calm as she discussed the future.

Somehow, she said, they will find a new place.

“What I hope,” she said of Shawn, “is that he stays where he is.”

She was speaking about matters much larger than their home.

Shawn Kennedy and his mother, Nicole. (Derek Gee/the Buffalo News)

Her longshot connection with Robertson happened through Mike Esposito, a history teacher at Niagara Falls High School. A few years ago, Esposito – aware of Shawn's illness – heard about how the child reveres basketball’s Steph Curry, who has led the Golden State Warriors to three National Basketball Association titles in four years.

Esposito, a friend of Golden State coach Steve Kerr, made some calls. In 2016, "Baby Shawn" and his family met Curry. The basketball great gave Shawn a pair of his sneakers, while Shawn gave Curry a rubber wristband emblazoned with his name, which Curry proceeded to wear in many games.

Steph Curry gets a major boost from a Niagara Falls fan … and a bracelet

That cemented the bond between Esposito and Shawn. They eventually met National Football League Commissioner Roger Goodell, which is a whole other story. A grateful Vathy wanted to raise community awareness about the number of children enduring similar situations.

She and Esposito put together a pediatric cancer walk. It is held at Prospect Point in early September, which serves nationally as Childhood Cancer Awareness Month. Last year, about an hour before it started, Esposito realized he forgot some paperwork for the event. He was hustling back to his car when a stranger called out to him.

Esposito stopped.

“Yeah,” April Robertson said. “I’m talking to you.”

She and her husband, on their visit to the falls, had noticed Esposito's T-shirt, which carries the gold ribbon that is a symbol of childhood cancer. In 2010, Robertson lost a 9-year-old cousin, Ethan Smith, to brain cancer. They were close. She was with Ethan when he died.

Years later, that experience - coupled with her own illness - inspired her to get involved in efforts to support Caiden Falcon, a friend's infant son who also had brain cancer.

Esposito told Robertson about the walk, and "Baby Shawn." Robertson, stunned, promised to be at the park that night.

When she saw Shawn, she started crying.

She had thought the walk was a tribute, in his memory.

On the spot, she made a vow to return for this year’s event. That commitment was reinforced when Esposito connected Caiden’s family with Go4theGoal, an organization that helped the Falcons with the costs of traveling to Memorial Sloan Kettering Cancer Institute, in Manhattan.

That story, too, had a hard ending. Caiden died in November. Robertson, in her grief, remembered the passion surrounding the child in Niagara Falls. Her own condition has stablized. She remains appreciative of Esposito's work, and she builds her philosophy for each new day around the idea that nothing is coincidence.

Friday, she climbed onto a Harley for the long journey to Niagara Falls, joined by about 20 friends on what they call Caiden’s Ride. Once here, they will present a check for more than $10,000 to Vathy and Esposito. The money will go toward the Go4theGoal and PUNT foundations, organizations that support families in similar situations.

To Vathy, all of it comes down to a question Shawn asked last week. He was in the car with his mother just after practice for his youth baseball team, a rare moment when the two of them were totally alone. Shawn is a thoughtful child and she is accustomed to his unexpected observations, but this one left his mother without words.

“Mom,” he said out of nowhere, “will I always have cancer?”

Vathy, in that instant, had no easy answer. She simply hopes he feels her joy about today, about the 'always' that is  now.

Sean Kirst is a columnist with The Buffalo News. Email him at skirst@buffnews.com or read more of his work in this archive.

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