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
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 thumb, and as of this July, CT and MRI scans show no evidence of disease. “We are very fortunate,” Webb says.
But epithelioid sarcoma has an ugly secret. This cancer often comes back later — even decades later. And when it returns, it grows aggressively and there are no drugs to stop it. Webb realized she needed to keep looking for a cure. “We’re never in the clear,” she says.