‘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 © Abel Uribe/Chicago Tribune Scott and Pammy Kramer show a picture of their daughter Maddie while sitting with their younger daughter Lily, 4, at their Lakeview home on May 5, 2021.
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.
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