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'You know nothing other than it is either success or failure.' Parents of kids with cancer plead for research as kids fight rare cancers with treatments intended for adults.

Alison Bowen, Chicago Tribune on

Published in Parenting News

CHICAGO — When their toddler daughter Maddie was diagnosed with cancer in 2017, Scott and Pammy Kramer felt her care was in good hands.

They had a wonderful Chicago doctor who talked them through a path forward. But Maddie’s treatment plan was based on scant data, as her rare childhood cancer could not lean on research and data more typically available for adult cancers. And most medications for her little body, her parents recalled, were designed for adults.

Maddie, who loved singing and dancing, died in 2018 at age 3.

“You get an ordinary type of breast cancer, and you’re going to get your printed treatment protocol, and you’re going to know the outcomes and the likelihood of success,” he said. “When you’re dealing with a rare pediatric cancer, you know nothing other than it is either success or failure.”

In an April 28 speech to Congress, President Joe Biden highlighted the need for cancer research, saying, “Let’s end cancer as we know it. It’s within our power.” Within the federal budget for cancer research, only a tiny slice is for kids; their parents have long been sounding the alarm on the need for more kid-centered research and treatments.

Many may assume plenty of funding exists for a cause as devastating as children’s cancer. But despite being the No. 1 cause of death for disease for kids and adolescents, funding for kids makes up just 4% of federal annual cancer funding, advocates for cancer research say. Some childhood cancers have seen limited progress for decades.


All this leaves children and their families fighting cancers that aren’t well understood in children and with therapies designed for adults.

“We need more treatments that are dedicated to childhood cancer,” said Aubrey Reichard-Eline, director of corporate and community engagement at the American Childhood Cancer Organization.

According to the National Institutes of Health, funding for research is hampered because pharmaceutical companies typically develop drugs for cancers that affect adults. This leaves children with few treatment options developed for them, and taking medicines originally created to treat much larger bodies than theirs.

“And on top of it, they’re super toxic,” Scott Kramer said. “It really is a lifetime of treatment, care and monitoring because of the effect of these drugs, and the inability to make progress in finding treatments that are not harmful.”


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