An energetic child, Shawn Kennedy was hitting a surprising number of shots from the free-throw line on Saturday. “Baby Shawn,” as he is called, showed little sign of his serious illness. Only the bald spot on the back of his head, under the ponytail of light brown curly locks, indicated what he has been through.
“If you ask him, he’ll tell you that he has a brain tumor,” said his mother, Nicole Vathy. “He doesn’t understand about cancer and life expectancy, all of that.”
Shawn was diagnosed with a rare and inoperable brain cancer in August.
On Saturday, the 5-year-old’s family, friends and others in the community rallied around him so he could have what every child understands – fun.
The happy Niagara Falls pre-K student was in his element, basketball in hand, as he darted among players preparing to take the court for a three-on-three tournament at Niagara Falls High School. The event was organized by Mike Esposito, a social studies teacher at Niagara Falls High School and basketball coach at Niagara Catholic, to raise money for Shawn. The money raised will help Shawn, his mother and brother attend a Golden State Warriors basketball game Wednesday in Miami. After the game, the family hopes to meet Shawn’s basketball hero, Stephen Curry.
Esposito also arranged the trip. Esposito has been a friend of Warriors head coach Steve Kerr since 1995, when the two met at a basketball camp.
When Esposito learned that Curry is Shawn’s favorite player, he said, “I emailed Steve to say, ‘I just found out about this 5-year-old kid in Niagara Falls with inoperable brain cancer. Would it be possible to get tickets to the game in Miami, and for him to meet Steph Curry after the game?’ He got back to me in about an hour, and said ‘I’ll get you tickets, we’ll do this right. I can assure you that Steph will spend a few minutes with him after the game.’ ”
The trip to Miami will be a high point in the rough past few months for Shawn and his family, which includes stepfather Clinton Smith and siblings Marius Bogar, 17; Myron Brown, 14; Mylaya Brown, 13, Mykhi Brown, 12; Meyarra Brown, 11, and Shiah Kennedy, 6.
The family’s ordeal began last summer, when Vathy became concerned because Shawn was twitching in his sleep. An MRI showed that Shawn has an aggressive, inoperable brain cancer called Diffuse Intrinsic Pontine Glioma, or DIPG.
Like most people, Vathy had never heard of this rare but devastating disease, which is diagnosed in about 200 children a year.
“They were straightforward. They said your son has six months to a year to live,” she said. “It was kind of rough.”
Her 6-year-old son, Shiah, is too young to understand, she said.
“The other ones understand what’s going on, but I don’t think they pay too much attention because Baby Shawn doesn’t show too many of the symptoms,” she said.
“It’s one of the hardest tumors we treat,” said registered nurse Tabatha E. Doyle, coordinator of the Brain Tumor Program at St. Jude’s Research Institute in Memphis, where Shawn was treated from Sept. 21 to Nov. 13. Speaking generally of the illness, Doyle said, “There is not a cure. You can’t do surgery either, because the tumor is in the respiratory center of the brain. If you did surgery the chance of the child dying on the table would be really high, because it can stimulate him to stop breathing.”
At St. Jude’s, Shawn was considered for a clinical trial of a new medicine that is used in conjunction with radiation to slow the progression of DIPG. But his MRI results looked a little different than doctors there expected, Vathy said. Instead, he had 30 days of radiation treatments.
A brain biopsy “showed that it was low-grade right now,” Vathy said.
A post-radiation MRI “showed significant shrinkage,” she said.
While Vathy and Shawn were at St. Jude’s, the community rallied around the family, recognizing the youngster’s favorite sport with a basketball tournament at Niagara Catholic and a basket auction.
“I was never able to thank anyone personally,” Vathy said. “Being here today and seeing how many people showed up, I wanted to cry.”
In January, West-Herr Chevrolet in Amherst donated a 2009 Town and Country van to the family.
“My transmission was going and it was really unreliable and it would stress me out all the time,” Vathy said. “This takes a little bit of burden out of things.”
Both Esposito and Vathy stressed the need to allocate funding to pediatric cancer research, which gets just a fraction of the research funding spent on adult cancer.
“The big pharmaceuticals don’t even try to find treatments or cures because not enough kids die,” said Esposito, although he said some 3,000 children die of cancer every year.
According to the Childhood Cancer Foundation, the type of cancer Shawn has is considered “terminal upon diagnosis and no new protocols have been developed in 30 years.”
Meanwhile, people are working to improve Shawn’s life. He was honored before the Niagara Falls High School varsity boys game on Jan. 29 and applauded on the court before the Niagara University men’s basketball game Feb. 7.
In March, Vathy, Smith and all the children will go on a Disney cruise organized by the Make-A-Wish Foundation.
One of Shawn’s most energetic supporters, Sarah Hilliard, 11, of LaSalle, has raised $500 by collecting bottles and cans at her school, Catholic Academy. Sarah was at the tournament Saturday with her sister and mother, Amy Hilliard.
“She thinks about him every day,” Amy Hilliard said. “She just wants to do anything and everything for him.”
Zion Paige, 13, one of the players, took a break between games to say that he attended “to support Baby Shawn and play the game I love.” He played on a team with Shawn’s brother, Mykhi Brown, who will be attending the Warriors game.
After the hectic day, Esposito said the event raised $1,950.
The reason for the attention and activity was summed up by Esposito, who opened the tournament with Shawn at his side. He explained to the young players, “we’re here for this little guy. We’re trying to make this little kid’s dream come true. Not many people can say that they’ve done something like that.”