The Kids Shouldn’t Have Cancer Foundation recently donated $75,000 to St. Louis Children’s Hospital to help support cutting-edge research and clinical trials for pediatric brain cancer treatment.
The non-profit foundation was created in memory of Jonny Wade, a Jerseyville boy who died at age 8 of brain cancer on Dec. 24, 2015. Jonny’s mother and father, Kimberly and Jon Wade, founded Kids Shouldn’t Have Cancer shortly after his death.
“This is the first donation that we’ve ever made,” said Kimberly. “It will fund a clinical trial at St. Louis Children’s Hospital. Jonny’s former oncologist, Dr. Karen Guavain, will be in charge of it.”
Karen Guavain, medical director of pediatric neuro-oncology and neuro-oncology co-director of experimental therapeutics at Washington University School of Medicine, said this trial is one of the first of its kind in the country.
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“Basically we’re taking tumor tissue, doing genetic sequencing and looking for gene defects that may be causing the tumor to grow,” said Guavain. “Then, we’re creating vaccines that work against those genetic abnormalities.”
Each vaccine will be personalized for the child who will receive it, she said.
The name for the foundation was taken from a statement that Jonny made during the suffering he endured in his final year: “I don’t want any other kid to have cancer.”
A week before Christmas 2014, he got a headache. Within eight days, Jonny was diagnosed with brain cancer. The disease progressed quickly. “Jonny only survived 363 days after he was diagnosed,” Kimberly said.
When Jonny was diagnosed the day after Christmas, we were thrust into the pediatric cancer world. We knew very little about it. We thought it was rare. But, we found out that around 46 children — about two kindergarten classes — are diagnosed with cancer every day. Seven children will die every single day from cancer.
Kimberly Wade, founder of Kids Shouldn’t Have Cancer Foundation
The last year of his life was filled with cancer treatments that had side-effects like radiation burns, nausea and fatigue which were “horrific,” according to his mother.
“He never wavered in his faith. Even though the treatments were awful and difficult for him, he tried to keep a smile. He cared about everyone else. He was an amazing soul,” Kimberly said.
Jonny has another surviving family member, a twin brother named Jacky, who Kimberly said had a pleasant Easter weekend. She mentioned that holidays are still emotionally difficult for the family.
However, she feels like Jonny makes his presence known. The foundation chose a butterfly for its symbol because Kimberly asked Jonny to send her butterflies from heaven, and he does. She sees butterflies — and not just live ones. “Once, I was walking through an airport, thinking of Jonny, and I saw a butterfly statue that I’ve never noticed before,” Kimberly said.
He also sends her “kisses” through the kindness of others. “Sometimes when I’m feeling down, at that moment a complete stranger will come up to me and ask if I’m Jonny’s mom or talks to me about him,” Kimberly said. She says it raises her spirits. “I call these my Jonny kisses,” Kimberly said. Generally, they know about Jonny’s story through the foundation’s Facebook page, which has around 70,000 followers.
Children with cancer are not as rare as one would think.
“When Jonny was diagnosed the day after Christmas, we were thrust into the pediatric cancer world. We knew very little about it,” Kimberly said. “We thought it was rare. But, we found out that around 46 children — about two kindergarten classes — are diagnosed with cancer every day. Seven children will die every single day from cancer.” She repeated, “Every single day.”
“Cancer is the leading cause of disease-related deaths for kids under 15 in the U.S.,” according to the foundation’s website, kidsshouldnthavecancer.org.
Though it may be a leading cause of death, pediatric cancer is underfunded, Kimberly said. “Less than 4 percent of the funding from the National Cancer Institute is given to pediatric cancer,” Kimberly said. “To put it into perspective, prostate cancer gets 7 percent.”
Kimberly said that approximately 80 percent of adult cancers are caused by lifestyle. Experts think childhood cancers are primarily due to genetics, she said. “They haven’t lived their lives yet. It is nothing that they’ve caused,” she said.
Cancer treatments differ for adults and children because “the diseases are so different,” Guavain said. For example, she said adult brain tumors are generally one type, but, tumors in children can be from a variety of categories and require varying treatments.
During his illness, Jonny was receiving adult chemotherapy but at a smaller dose so that his body could take it. Kimberly described the process as “ravaging.”
“Even if he had survived, Jonny would never have lived a regular life due to the treatment alone,” Kimberly said. “He would not have grown to his full height because of the radiation applied to his spine.”
There are even cancers associated with the treatment of pediatric cancer. “It depends on how they’re treated,” Guavain said. “Certain chemotherapy drugs put patients at risk for leukemia. Certain radiations put patients at risk for developing brain and bone tumors.”
Just because someone survives a childhood bout with cancer doesn’t mean that he or she is safe from a recurrence of the disease. “At age 40, survivors of pediatric cancer are twice as likely as the general population to develop a second cancer,” according to the foundation’s website.
The recent $75,000 donation for St. Louis Children’s Hospital was raised in less than a year through two fun runs, one held in Jerseyville, the other in Missouri, and a foundation Gala held last September. “We are trying to fulfill Jonny’s wish that no other kid have cancer,” Kimberly said. “This is a good start, and we hope to keep going.”
Kimberly and Guavain are hopeful that the new clinical trial will have positive results.
“I’m optimistic that we have an alternative from what we’ve done historically. More chemo and radiation is just not working,” said Guavain. She said that researchers still have a long way to go, but this is a move in the right direction.
“Ultimately we want a cure, but in the meantime we need to look at better treatments that have less side effects,” Kimberly said.
Donations can be made directly through the foundation’s website, or at the upcoming 2017 Gala in September. More details on the foundation’s website or Facebook page will be available closer to the event date. Kids Shouldn’t Have Cancer is also on Instagram and Twitter, where they provide updates on pediatric cancer research and the foundation’s progress.