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Illustration: Haleigh Mun

When Erica Avello’s son Frankie Knowles woke up screaming in the middle of the night, the first thing she did was take his temperature. “I thought the thermometer was broken,” Avello says. “His forehead was freezing, and his temperature was 94 degrees.”

After complaining that his head hurt, Frankie, then six, vomited and “became nonresponsive and just kind of floppy,” Avello says. She and her husband rushed Frankie to the hospital closest to their Downingtown, Pennsylvania, home. “They did a CT scan and said his brain was bleeding.” Frankie was transferred by helicopter to Delaware’s Alfred I. duPont Hospital for Children, where he underwent more than a week of testing and scans.

“His temperature was so low,” Avello, 40, says, “because the tumor was affecting the area of the brain responsible for temperature regulation.” Frankie was diagnosed with Pilomyxoid astrocytoma — a rare form of cancerous brain tumor that only develops in pediatric patients. It had already metastasized…