WESTPORT, Conn. — Westporter Phoebe Spear, 16, raised everyone’s spirits at Sunrise Rotary with a recent speech about her battle against two different types of cancer.
Phoebe's story begins when she was diagnosed with osteosarcoma, a bone cancer, in her right tibia as a fifth-grader.
For the next three years, she underwent chemotherapy at Memorial Sloan Kettering Hospital. “I thought I was home free.”
But then Phoebe was diagnosed with secondary leukemia, a side effect of her chemotherapy.
Her doctors told her that there's just a 1 percent chance of a cancer patient coming down with it. “I was the 1 percent … 'I was special,' they told me."
But what was truly special was that her younger sister, Allie, became her bone marrow donor and saved her life.
“Now I’m walking … and I’m returning to a normal life,” Phoebe said.
She walks with the aid of two state-of-the-art prosthetic devices. Phoebe was one of the first to receive an implant that obviates amputation, a rod with a small gear box replacing her tibia.
Every couple of months she returns to the hospital for a noninvasive procedure to extend her leg.
Earlier this month, she and her mother went to Seattle, where she was fitted for an IDEO — an Intrepid Dynamic Exoskeletal Orthosis. It's a device created to enable soldiers who have suffered bomb blast-related injuries to regain use of their legs. It was only recently made available to civilians.
It is a custom-designed carbon fiber orthotic with two metal rods along the back of the leg connected to a carbon fiber cuff higher up the leg to absorb the energy of foot strikes.
Phoebe’s mother, Ellen, also addressed the Rotary. “This town has been incredible,” she said. "Lots of people, even people I didn’t know, cooked meals. ... They even put a cooler on our front porch and filled it with fruit.”
As a thank you to Sloan Kettering, Phoebe, her parents and a group of friends started Phoebe’s Phriends — a nonprofit to raise money for pediatric cancer research.
Phoebe started a Phoebe’s Phriends club at Staples to do the same, to bring volunteering home and to make giving back accessible to teenagers.
Their major fundraiser last year was Colorflash, a noncompetitive 5K run/walk. People threw colored dust that turned participants into “rainbows.” An anticipated 200 runners slowly grew to 1,700. The event raised $60,000.
Colorflash will be held again, on Sept. 27, at 10 a.m. at Sherwood Island State Park. They expect 2,500 participants. For more information, visit the event's website .
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