Father who lost 2-year-old daughter to cancer hopes to spread inspiration in her memory
(NewsNation Now) — You may not have noticed people around work or town wearing gold this month. You may have also missed the signs that have popped up in front yards or on the sides of buildings with faces of children on them.
It’s all because September is Childhood Cancer Awareness Month.
Cancer is the leading cause of death by disease among children in the United States, but it receives just 4% of federal funding for research.
Still, the outlook for children diagnosed with cancer is currently improving — and so is awareness.
Some of the top business tycoons in America are taking notice, including Elon Musk. He spearheaded a $200 million donation to the St. Jude Children’s Research Hospital with his most recent SpaceX flight Inspiration Four. Onboard was Hayley Arceneaux, a childhood cancer survivor who is now helping with critical medical research.
Dr. Nicholas Alexander Vitanza, a pediatric neuro-oncologist at Seattle Children’s Hospital, works on the front lines of the battle and has seen the short and long-term health effects of these diseases in children.
“Unfortunately, for almost all pediatric cancers, the initial therapy is some type of surgery. Pretty commonly, you have radiation afterward. And then you get cytotoxic, old-fashioned chemotherapy that does a lot of damage to the body,” he said. “So children have loss of their normal growth, loss of their natural sexual development — are unable to have children sometimes, have lifelong headaches. And these are effects that they have during their treatment, but then continue for the rest of their life. And so by the time they’re adults, most pediatric cancer survivors have multiple chronic illnesses.”
Vitanza says he hopes a day will come when doctors will no longer need to treat cancer with radiation and old-fashioned chemotherapy but says we’re not there yet.
“Specifically, in my lab, we look at immunotherapy and targeted genetic therapies that we can give to children that are really specific and personalized for their tumor. And hopefully, one day by doing this will avoid all the more toxic therapies,” Vitanza said.
Scott Kramer, who lost his daughter 2-year-old daughter Maddie to cancer, hopes to see that day, as well. Kramer said the disease progressed incredibly fast in Maddie.
“We showed up at the emergency room at Lurie Children’s in Chicago truly thinking that Maddie just had a cold,” he said. “She had some pain in her neck, some cold symptoms. And that evening, I put her on the scale at a triage. And her legs literally went out from under her and in a matter of minutes, grew paralyzed on the left side of her body.”
This would ultimately lead to a six-hour surgery to remove a mass from the inside of her spinal cord.
Scott, who would go on to found the organization Dancing While Cancering in Maddie’s honor, said he wanted to make her life about inspiration and less about the pain she had to go through. So he thought about her love of dancing.
“After Maddie passed, we wanted to make sure that we could ensure that her life was remembered an inspiration and in a way that was so her, so Dancing While Cancering brings joy to kids inside the hospital,” Kramer said.