When doctors diagnosed Reagan Johns’s 3-year-old son, Brodie, with embryonal rhabdomyosarcoma, a form of pediatric cancer, she began what she knew would be a hard, lonely journey. A Facebook friend request helped ease some of the hardships and led to the creation of Fighting for Gold, a Highland Lakes group helping other families whose children are battling cancer.
Gold is the symbolic color for childhood cancer because the metal is considered precious — as are children.
The group’s mission is simple: support families faced with the devastating diagnosis of pediatric cancer, whichever cancer that might be, and there are a lot.
“That can be whatever they need,” Johns said, whether it’s helping them manage tasks while they spend days, even weeks, at a hospital, or assisting with the financial burden.
In Johns’s case, as Brodie’s first of 40 chemotherapy sessions began in Austin, the family was in the middle of moving into a new home.
Johns had recently connected with Lisa Degeyter through Facebook, and although they had never met face to face, Degeyter was instrumental in getting the Johns household moved while the Highland Lakes mom sat by her son’s side in the hospital.
“It broke my heart,” said Degeyter, recalling how she felt when she learned of the family’s struggles.
Degeyter knew what they were going through firsthand. In 2013, her son, Kenyon, was diagnosed with leukemia. He was 12 at the time.
“These kids get so sick,” Degeyter said. “Sick — you just don’t know …”
“They’re at death’s door,” Johns added.
One day, Kenyon was outside playing like a normal child; the next, he was in the hospital suffering from complete renal failure with a blood clot in his brain.
“You feel like you’re walking on glass,” Degeyter said. “You just want someone who knows what we’re going through.”
“Someone you can talk to, laugh with, and cry with,” Johns agreed.
“Everyone can sympathize with you, but to really know what it’s like to see your child go through so much pain, they don’t understand it,” she continued. “Only parents who’ve been through it really understand what it’s like.”
Brodie is in remission now and attending prekindergarten. He’s full of life and laughter, Johns said.
At 17, Kenyon has graduated from high school and looks nothing like the child who battled leukemia. He works 40 to 50 hours a week, follows a workout regime, and has expunged sugar from his diet.
While putting together the organization, Johns and Degeyter were joined by Heatherly Bieze, who also had a child fighting pediatric cancer. They began with research, learning that only 4 percent of all cancer funding goes to childhood cancers, which number in the dozens, not counting the subtypes within those main groups.
“Forty-three kids a day in the United States get diagnosed with some form of pediatric cancer,” Degeyter said. “It’s more common than most people think.”
To help spread awareness of pediatric cancer, Degeyter often wears a T-shirt with the words “More than four” blazoned across it. It’s a great conversation starter.
While the organization is still small, the members’ desire is huge. A Fourth of July kickball tournament and barbecue with location to be determined is planned as a fundraiser, and they are looking for volunteers and assistance.
“We could use some help with the website,” Johns said. “We have a lot of things for volunteers to do.”
In the end, Degeyter and Johns want to provide something they didn’t have, or couldn’t find, when their own children were in life-and-death struggles with cancer.
“Just someone to listen, someone who really knows what it’s like,” Johns said.