All parents should be 'outraged' in fight against pediatric brain cancer, say two CNN correspondents

Updated 7:01 AM ET, Tue September 7, 2021

(CNN)Like many new parents, René Marsh felt her life was "transformed" in March of 2019 when her newborn son Blake was handed to her by a nurse.

"It really is like someone hands you your heart," said Marsh, who is a CNN correspondent. "My instinct from the second that I was holding him was to protect him. And my purpose in life was making sure that Blake was well, making sure that Blake had all that he needed."
CNN correspondent René Marsh and her infant son Blake.
For CNN investigative reporter Andrew Kaczynski, that moment came when he saw a blip that looked like a "bean" on an early ultrasound.
"We began calling her 'Bean' and even after Francesca was born, the nickname stuck," Kaczynski said.
"Francesca was just like the most smiley, bubbly little baby. She loved to smile at me. My favorite part of the day was always waking her up from her nap and just seeing that big smile across her face," he told CNN Chief Medical Correspondent Dr. Sanjay Gupta in the opening episode of season two of his "Chasing Life" podcast.
Francesca "Bean" Kaczynski.
Tragically, Marsh and Kaczynski both lost their babies to the cruel reality of pediatric brain cancer. Nine-month-old "Bean" died last Christmas Eve, a mere three months after her diagnosis. Blake lost his brave battle shortly after his second birthday.
Every year, some 5,000 children in the United States are diagnosed with pediatric brain cancer -- the leading killer of children under the age of 15. Yet medical knowledge of how to treat brain cancer in children is far behind other adult cancers. Why?
"Because children don't vote," said Amy Weinstein, the national director of research investments and advocacy for the Pediatric Brain Tumor Foundation.
"Because we haven't had vocal advocates with a loud enough voice to communicate boldly and strongly enough to our leaders that there is a need. And because academic medicine is where research is happening, and those academic medicine folks are not funded in large part by drug development companies," Weinstein said.
"Pharmaceutical companies do not care about these kids. I get it. It's not profitable," Kaczynski said. "Because of that, it's up to private charity and the government to fund the clinical trials being done by oncologists."
September is National Childhood Cancer Awareness Month, and Blake and Bean's parents are raising their voices to tell you just how much you are needed in the fight against pediatric brain cancer.
"We need American citizens to rally around this and say, 'It's not fair that a child cannot live out their dreams, that they can't make it to kindergarten,' Marsh said.
"It's easy to gather a group when it comes to other people who have lost children," she added. "We have to get to a point where we're not just outraged ... but parents with perfectly healthy children are outraged as well."

A mystery that needs to be solved

Cancer in adults can often be traced to various lifestyle choices -- smoking, drinking, eating red and processed meats, obesity, chronic inflammation and a lack of exercise, to name a few.
But children have not yet abused their bodies in these ways. Most cancers in children are thought to be the result of an errant mutation or deletion in how cells copy their DNA early in the infant's development.
Could that be due to exposure in the womb to radiation or other chemical or environmental contaminant in the modern world? Or is it truly an unlucky random aberration? According to the American Cancer Society, "the causes of DNA changes in most childhood cancers are not known."
The lack of knowledge is driven by the lack of research, which is driven by the lack of funding. In 2018, it is estimated that only 4% of the nearly nearly $6 billion budget given to the federally funded National Cancer Institute targets pediatric cancer -- all childhood cancers -- partly because they are so "rare."
"Pediatric cancer isn't as rare as you think as one in 285 children will develop cancer before the age of 20. That's not really rare," Weinstein said.
Funding for research in childhood brain cancer is even more limited. Until two years ago, Weinstein said, no targeted drug therapy had ever been successfully developed to treat any of the more than 200 types of pediatric brain tumors.
It took until this July for a targeted drug therapy called DAY101 to be granted a "rare pediatric disease designation" by the US Food and Drug Administration. The drug was developed to treat pediatric low-grade gliomas (pLGG), the most common brain tumor diagnosed in children.