Battling cancer has bonded Ashley Burnette, 12, and Kenny Thomas, 11, even though they live thousands of miles apart. These two best buds are sharing their story with other kids facing cancer and pushing legislators to increase funding. (Photo: Hyundai Hope on Wheels)
Three years ago, just before he was set to begin third grade, 8-year-old Kenny Thomas came down with a cough he couldn’t shake.
“Kenny also had night sweats and was losing weight,” his mom, Lori, who lives with her son and husband in Long Beach, California, tells Yahoo Parenting. “I took him to the doctor, who brushed it off as a bad cold.”
The cough persisted, so a few weeks later, Lori brought Kenny back to the doctor, who blamed it on postnasal drip. But her mother’s instinct told her that something else was going on. After Kenny threw up the next day before a soccer game, she took him to the ER.
An x-ray revealed an enormous tumor in his chest, so big that it was crowding out his heart. Tests showed that Kenny had stage III Non-Hodgkin lymphoma, a cancer of the lymph system.
“They had to pick me up off the floor, I was so shocked,” says Lori. And with that, Kenny joined the ranks of the 15,000 kids diagnosed with childhood cancer each year — an illness that is also the number one cause of death by disease in young people under 18.
After months of chemo that caused him to miss the school year and lose his hair, Kenny’s cancer went into remission. For another year and a half, he took chemo drugs and antibiotics to keep it from returning. In May 2014, Kenny’s physicians told him he was cancer-free.
Kenny and his parents, Lori and Ken, during his cancer fight, which caused him to lose his hair but not his positive outlook. (Photo: Lori Thomas)
Today, he’s a sports-loving, outgoing 11-year-old whose only interaction with doctors is the regular checkup he undergoes to make sure the cancer hasn’t come back. “I can do anything other kids can do,” says Kenny. “Me and my friends ride bikes and play basketball and football. We swim, and we play video games.”
September is Childhood Cancer Awareness Month, a time to shine a light on cancers that tend to strike children as well as focus on the kids and families who are dealing with the shock and upheaval a cancer diagnosis brings.
Kenny is doing his part by taking his story to Washington D.C. Wednesday. He’s participating in DC Days, a program that runs through Friday in the nation’s capital. The event is organized by Hyundai Hope on Wheels, a nonprofit launched by the car company in 1998 to provide millions of dollars in research grants to doctors and pediatric cancer institutions — so new treatments can be developed and a cure can be found.
Kenny is one of two child youth ambassadors for Hyundai Hope on Wheels. He and his co-ambassador, Ashley Burnette, a bubbly 12-year-old from North Carolina who survived two bouts with cancer, will visit children’s hospitals in the D.C. area, inspiring other kids (and their families) to keep fighting the disease and reminding them that they are not alone.
Ashley (with older sister Olivia and parents Nicole and Hunter) underwent chemo, radiation, and surgery to beat her cancer. (Photo: Nicole Burnette)
On Friday, September 18, Kenny and Ashley will head to Capitol Hill with other members of the Hyundai Hope on Wheels team. There they’ll meet Congressional reps and policy makers and make the case to increase federal funding for pediatric cancer research.
It’s an important call. Incredibly, just 4 percent of federal cancer research dollars at the National Institutes of Health goes to childhood cancer. Treatments that can work on adults are not necessarily suited for young, developing bodies, and they can cause longterm side effects, such as fertility issues.
To help conquer pediatric cancer, Hyundai Hope on Wheels has distributed more than $100 million in research grants over the past 17 years, Zafar Brooks, program executive director, tells Yahoo Parenting.
“When most people think of cancer, they think of adults battling the disease and the lifestyle factors that can lead to different types of cancer, such as smoking and lung cancer or being in the sun and melanoma,” says Brooks.
“But kids who have cancer have none of these risk factors. And though fewer children are dying than in previous years, with some cancers having a 90 percent cure rate, one in five kids won’t survive,” he says. “Our goal is to stop this illness. No child should die of cancer.”
Two years before Kenny was diagnosed with Non-Hodgkin lymphoma, Ashley, then a 7-year-old second grader on the other side of the country living with her parents and older sister, found out that she had stage IV Neuroblastoma, a type of cancer that often affects young people.
“Ashley’s dad and I saw that she was walking with a limp, and she had a black eye that wouldn’t go away,” Nicole Burnette, Ashley’s mom, tells Yahoo Parenting. “Our doctor discovered a tumor on her adrenal gland, a tumor on her spine, and the neuroblastoma in her bone marrow.”
Like Kenny, Ashley stopped going to school and instead attended treatment, which included surgery, chemo, radiation, and a stem-cell transplant. Somehow, she never lost her optimistic mindset. “Even when my hair started falling out, I got to wear cool hats,” Ashley tells Yahoo Parenting.
Her darkest hour may have been when doctors discovered a second cancer, Non-Hodgkin lymphoma, a year into her fight. “That threw us for a loop, but in two years, she was in the clear,” says Nicole. Doctors pronounced Ashley free of cancer in 2012.
“Before Ashley was diagnosed, we knew one person with cancer; now we know hundreds,” says Nicole. “Half the kids Ashley was in treatment with have lost their battle. We didn’t realize how little funding pediatric cancer gets.”
Since they became co-ambassadors, Kenny and Ashley have also become best pals. “They fell in love with each other; they’re like brother and sister,” says Nicole. DC Days is the last event they will do before the Hyundai Hope on Wheels organizers select two new child ambassadors to take on the responsibilities of speaking to the media and inspiring cancer-stricken kids.
Both still have messages they want to get out there. “I want adults to know that pediatric cancer doesn’t get much awareness or funding,” says Kenny. “But even better, I want to give other kids hope. I tell them to never give up. That’s my motto.”
Adds Ashley: “I tell kids to keep fighting, they’ll get better, and have a positive attitude. If they believe they can get through it, they can.”