Friday , October 07, 2016 - 5:30 AM
Sadly, even superheroes aren’t invincible.
The Heroes for Families fundraiser, the annual superhero-themed run/walk to benefit children with cancer, is scheduled for Saturday, Oct. 8, in the Plain City Town Square. This year’s event will assist the families of two real-life superheroes — one whose fight with the ultimate villain ended this summer, and one who continues the battle.
Joshua Jones was 8 years old when doctors discovered his first brain tumor. The son of Ruth and Gordon Jones, of Clearfield, Joshua underwent six weeks of full brain and spine radiation — along with 59 weeks of inpatient chemotherapy treatment spread out over almost a year and a half.
“He went five years where he couldn’t go to school at all, his immune system was so bad,” recalls Ruth Jones.
Then, this past April, Joshua began having seizures. He was diagnosed with “the most aggressive brain tumor there is,” according to Jones.
Joshua died Aug. 22, at the age of 17.
Ironically, it was the radiation used on his first tumor that caused the one that eventually killed Joshua — not that there were any other options. Jones says her son would have died years ago if he hadn’t gotten the radiation on that first tumor.
Jones called her son a driven young man who packed a lot into life.
“He accomplished more in his 17 years than I will accomplish in my entire lifetime,” she said.
Joshua’s LDS faith was important to him. The last time he went to church, he was so weak he could barely stand. But he still wanted to bless the LDS sacrament of bread and water.
“After he knelt down and blessed the sacrament, the other young men had to lift him up to put him back in his wheelchair,” Jones says.
Joshua attended the LDS temple weekly, and set a bucket-list goal to do baptisms in every temple in Utah.
“He made it to all but two of them,” Jones said.
Joshua was also “adopted” by a motorcycle group, and 100 motorcycles escorted his body to the cemetery.
The other Heroes for Families superhero recipient this year is Johnny Knowles, the 11-year-old son of JoAnn and Ryan Knowles, of Layton.
Back in 2014, at a routine parent-teacher meeting, Johnny’s second-grade teacher wanted to know what his parents were giving him for his headaches.
“He was sleeping in class all the time,” mother JoAnn Knowles says. “He’d sleep on the playground. One day, he stopped at a friend’s house, and he fell asleep on their front steps.”
Knowles calls that time in their lives “bizarre and scary.” Johnny was sleeping 18 to 20 hours a day. Doctors initially thought he had an ear infection.
“But we noticed he was falling asleep chewing his food,” Knowles says. “Every three or four minutes, he was falling asleep.”
They took Johnny to Primary Children’s Hospital. The doctor couldn’t even have a conversation with the boy.
“He’d ask Johnny ‘What’s your name?’ and Johnny would fall asleep,” Knowles said.
An MRI found a tumor the size of a half-dollar on Johnny’s hypothalamus. Although chemotherapy reduced the tumor to the size of a pinhead, Knowles says there are no guarantees.
“With this type tumor, he’ll never officially be cancer-free; it can come back anytime it wants to,” she said.
So every four months, Johnny goes back for another MRI.
The hypothalamus is not a good place to have a tumor, as it affects almost everything else in the body, according to Knowles.
“He’s not the same as he was before the brain tumor,” she said.
Johnny used to be into sports, and he had a completely different personality. But the cancer and the medications have taken their toll on the boy.
“It messes with the emotions,” his mother said. “He’s extremely emotional now. You ask him to do something he doesn’t want to do, and he’ll start crying.”
Johnny gained quite a bit of weight during the ordeal, and the chemotherapy affected his bone density. As a result, he had to have knee surgery about two months ago. He also developed sleep apnea, so he’s on a bi-pap machine, and he had his tonsils and adenoids removed last spring. Johnny will be on medications for the rest of his life.
“The longer he goes without it coming back, the better,” she said. “But he still has a fifty-fifty chance of it coming back.”
Heroes for Families is a nonprofit organization that seeks to financially help the families of children battling cancer and other serious illnesses. It was formed by Scott and Debbie Hansen, of Plain City, who lost their daughter Carissa in 2006, following a five-year battle with a brain tumor.
Three years later, they started Heroes for Families, which every fall hosts a superhero 5K run/2-mile walk at the Plain City Town Square, 2350 N. 4350 West. This year’s race begins at 9 a.m. Saturday, and features food, prizes, music and more. Cost for the race is $20 per person, and the Hansens say every penny will go to the Jones and Knowles families. For more information on the event, visit www.heroesforfamilies.org.
“Frankly, it helps to be reminded of my daughter,” Scott Hansen said. “Of course, we do this for her. I myself wouldn’t have done this without her — I’m kind of a selfish person. But this has helped us heal, by helping us concentrate on someone else.”
Now in its seventh year, the Heroes for Families race has been steadily growing. Last year, the organization provided $18,000 to the Hunsaker family in Brigham City. When they delivered the money, it was “a special thing,” Hansen said.
“We met with the family, and they were surprised to get as much as they did,” he said. “When we left, there was a little crack in the drapes in the front living room, and we looked in there and the mom and dad were hugging. It was definitely worth it seeing that — this is why we do it.”
Kevin Johnson, who volunteers with Heroes for Families, says the organization chose two families to support this year.
“The sad thing is, one of the boys has since passed away,” Johnson said. “But we still wanted to give them the money, to help with funeral expenses.”
Jones says she doesn’t know how her family would have survived this summer without the support of people like the Hansens, who understand losing a child to cancer and have dedicated themselves to helping the community.
“It’s heartbreaking that there are enough parents to call it a community,” Jones said. “But that’s what it is: A community of people who understand, who know what you’re going through, and who care. We have a bigger family today. We’ve lost one member for a time, but we have gained so many more. We’re eternally grateful for the people who’ve taken our family by the hand.”
Contact Mark Saal at 801-625-4272, or firstname.lastname@example.org. Follow him on Twitter at @Saalman. Like him on Facebook at facebook.com/SEMarkSaal.
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