ABOVE: Jason Huff is pictured with gifts during his Make-A-Wish visit to California in June 2016. / Submitted
By RACHAEL LONG
Jason Huff had a big personality.
He was sweet, affectionate, and loving. His mother Kristine says he was also a ham.
“Silly, wild … you never knew what was going to come out of his mouth,” Kristine said with a laugh. “Totally a ham … he was a special boy.”
When he was just eight years old, Jason died from a rare form of childhood cancer, osteosarcoma. One of the things Kristine remembers most about the days after he passed was how quiet the house seemed.
“A big life he was,” Kristine said.
Jason was a student at Sunset Elementary School, his older sister at Sunset Middle School. Though the family resides in Brentwood, Kristine said Jason had friends through school from Nolensville, too.
It’s been more than two and a half years since Jason died, but those who were close to him have found ways to honor his fight with sarcoma and keep his memory alive.
Kristine says she and her husband Kevin both organize a team for races that raise money for cancer research. They’ve taken a kind of ownership over each race.
Kevin’s race is the “Warrior Dash,” which benefits St. Jude Children’s Research Hospital. While Jason received his treatments at Vanderbilt Medical Center, Kristine said the family sought a second opinion at St. Jude, and decided immediately to do whatever they could to support the hospital.
The Warrior Dash is a way to do just that, as teams must fundraise in order to participate in the race.
“The first year … it was rained out, so it ended up being on Jason’s birthday,” Kristine said. “My husband liked that the Warrior Dash kind of coincided with when his birthday was, and it’s a good way to honor him.”
Jason’s birthday is April 23, and he would have been 11 years old this year.
This year’s Warrior Dash is scheduled for May 4, and Kevin’s group, “Team Super J” has 14 runners signed up, so far.
The fundraiser Kristine has taken on as her own is the “Race to Cure Sarcoma,” benefiting the Sarcoma Foundation of America. Her team, called “Jason’s Jedi” raised more than $5,000 last year. This year’s race will be held in Franklin in October, the specific date yet to be announced.
Neighbor and family friend Karen Ray pitches in to help raise money for cancer research, too. Ray handcrafts food for American Girl Dolls and made a medley of foods that she sells as a set and calls it “Jason’s favorites.” It includes chicken nuggets, candy bars, a loaf of Outback bread, Oreos and more. The sets sell for a donation of $11 and can be found here.
Ray and Kristine have known one another for almost five years, since Ray’s family moved into the Brentwood neighborhood, Brookfield.
Raising money for childhood cancer research isn’t where the buck stops for the Huff family. They also make a point to raise money every year for the Make-A-Wish foundation.
Through a neighborhood lemonade stand themed “Shaking up Wishes,” the family and friends raise money for Make-A-Wish of Middle Tennessee.
During its first year, Kristine said they raised about $150. Last year, that number was closer to $540.
Neighbor and family friend Karen Ray helps organize the stand, and her daughter Jordan is good friends with Kristine’s daughter Ali. The girls and their friends run the stand each summer, and Ray said she hopes the community will come out and help them break their $540 fundraising record.
The neighborhood lemonade stand will be up and running again in July.
Because of their dedication to fundraising, Kristine said they have been invited to the Make-A-Wish Golf Classic in Massachusetts this summer.
In June of 2016, Make-A-Wish granted Jason’s wish and flew him and his family to California to meet the makers of “Annoying Orange” at the YouTube studios. While he was there, the creators of the children’s cartoon series invited Jason to record the voice-overs for a few characters.
The Make-A-Wish trip included an outing to Dave and Busters as well as a day at Universal Studios.
“They were really good at kind of pulling out what his interests were … That was his wish, ‘I want to be a YouTube star,’” Kristine said. “It was amazing, it could not [have been] more tailored to Jason’s personality … he just felt so special.”
The Annoying Orange team filmed much of Jason’s visit with Annoying Orange, which can be viewed here.
The Make-A-Wish trip coincided with the short window of time when Kristine said Jason felt good and most like himself again.
Doctors told the family they were worried Jason’s illness had progressed to a stage that didn’t have much of a chance at survival, called “multifocal osteosarcoma.”
“Sometimes when it gets momentum it’s like a freight train, and that’s what happened,” Kristine said.
In July of 2016, a scan revealed Jason’s condition was stable. But just five weeks later, doctors found that tumors had spread to his lungs, arm, spine and skull.
“There really wasn’t an opportunity to do anything in between,” Kristine said, biting back tears.
Jason’s treatment used one of the strongest types of chemotherapy available, Kristine said. With such a bleak prognosis, the family decided not to put Jason through a weaker treatment that would make him feel worse.
“It just felt selfish to try to do anything except manage his pain because we knew it wasn’t gonna save his life,” Kristine said. “If we could’ve gotten a couple months, what would that have been? A couple months where he was in pain and miserable.”
“And you guys, I mean, of course you would do anything for him,” Ray said to Kristine. “But they were so fantastic. I mean, they literally lived there at the hospital as a family … because they wanted to be together.”
Though it is difficult to talk through some of the harder moments Jason faced during his journey with cancer, Kristine says she’s “never not talked about it.”
“When someone dies, and especially a child, people are afraid to mention it … but that’s my biggest fear, that nobody talks about him,” Kristine said. “I’m always posting things on Facebook … either [of] him or about cancer or Sarcoma … I just feel like that’s the way to get it cured, to never stop talking about it.”
For more information on Osteosarcoma or ways to get involved in fundraising, visit the St. Jude Children’s Research Hospital website here.