Blair L. Scroggs
Public Relations Coordinator of American Childhood Cancer Organization
“They told us there was a mass in her brain. And you know what’s really funny about that time? When they said there was a mass in her brain, I still didn’t think it was cancer. I genuinely didn’t even know that children can get cancer. Isn’t that ridiculous?”
This is the story of Tracy Hughes, remembering her niece Eva’s diagnosis of medulloblastoma. Until childhood cancer touches someone personally, it’s an issue and a heartache that, though unimaginable, someone else has. Someone distantly. It’s rare, they say. However, every three minutes, a family somewhere in the world hears the devastating news that their child has been diagnosed with cancer.
Kids can’t fight cancer alone
Symptoms could be as simple as a head tilt or bruising on the body. Hauntingly, childhood cancer symptoms mimic many common childhood ailments. Cancer remains the number one cause of death by disease of children in America. Though survival rates for many types of childhood cancer have improved, for too many children, cancer will still take them too soon. Too often, lack of awareness of the signs and symptoms means 80 percent of children diagnosed will have metastasis by the time a diagnosis is made.
Each year in the United States, there are an estimated 15,780 children between the ages of 0 and 19 years who are diagnosed with cancer; yet funding remains devastatingly low. In 2018, the Survivorship, Treatment, Access, and Research (or STAR) Act was passed into law and signed by the president. It authorized Congress to allocate $30 million annually for five years into pediatric cancer research funding including bio-banking and survivorship studies. During the 2019 State of the Union Address, the president announced an unprecedented $500 million over the next 10 years towards critical life-saving research through the Childhood Cancer Data Initiative.
Treatment improvements needed
Despite recent advancements, treatment protocols have largely remained the same over the past several decades. Standard treatment options include chemotherapy and radiation therapy, which are highly toxic and can cause further health problems later in life. Kyler “developed a foot drop in the right foot and peripheral neuropathy from vincristine,” Ashley Pike said after her son’s cancer treatments.
In the last two decades, only four new drugs have been approved by the FDA specifically for childhood cancer. “It is mind-boggling and disturbing to know that a child diagnosed with AML [acute myelogenous leukemia] today will be treated pretty much the same way that my daughter was 32 years ago,” said Ruth Hoffman, CEO of the American Childhood Cancer Organization. It is critical that we push relentlessly for new and less toxic treatment options specifically for childhood cancer. After asking a survivor about advice she would give a recently diagnosed patient, Juanita Prada said, “you might feel scared, worried, sad, mad, lonely, or jealous. And it’s okay to feel this way. My advice to you during these unhappy times is to try to surround yourself with all the things that make you happy. ” Prada is a cancer advocate and pre-B cell ALL survivor.
Founded in 1970 by a dedicated group of parents of children with cancer, the ACCO is the oldest and largest grassroots childhood cancer organization in the U.S. and only U.S. member of Childhood Cancer International. We are dedicated to making childhood cancer a national health priority through shaping policy, supporting research, raising awareness, and providing educational resources and innovative programs to children with cancer, survivors, and their families. This September — Childhood Cancer Awareness Month — join us to make a difference in the fight against childhood cancer. Because kids can’t fight cancer alone…®