NPR

Scientists And Parents Band Together To Research Cures For Rare Childhood Cancer

A research start-up is connecting parents with scientists in hopes of sparking new research on diseases whose survival rates and treatment options haven't budged in 30 years
Connor Webb and his mother, Kim Webb, stand outside of their home in Huntington Beach, Calif. Connor was treated for a rare cancer at 16. He's well now but his mother is fighting for new cures in case the cancer comes back.

Whenever she asked doctors about the lump on her son's right thumb, Kim Webb heard a similar response: "No big deal. Just take care of it whenever."

They were wrong.

Last January — after the lump had doubled in size, prompting surgery to remove it — the doctor phoned Sunday evening with a diagnosis: epithelioid sarcoma, a slow-growing soft-tissue cancer.

"It was the worst day of my life," said Webb, a mother of two in Huntington Beach, California. "I just sat in my car and cried and cried in disbelief."

After a blur of tests and scans during the month after diagnosis, Webb's 16-year-old, Connor, went in for another surgery — this time for full resection of the tumor plus a bit of surrounding tissue to prevent recurrence. He regained full use of his

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