Immediately following the accident, Riley began to experience back pain. Doctors thought it was a slipped disc, or sciatica. Because of the pain, Riley visited the emergency rooms of local hospitals frequently. She once encountered a doctor who told her mother that she was a “drug seeker” and needed counseling. Then she was out in public, and after climbing one stair, she could not go any further. She was carried home, and needed to use a wheelchair after that point.
She was referred to a neurologist, who did an MRI, and discovered the tumor. She was sent to Boston for surgery. During the initial surgery, her sacrum and bones decayed, and she required more extensive surgery that could have left her paralyzed for life. But it didn’t turn out that way. “When I first went in I couldn’t feel my feet. When I came out I could,” she said.
Riley then began participating in a clinical trial for a drug that at the time was not FDA approved. That drug, Denosumab, was approved in June of this year for treatment of Giant Cell Tumor. While she said it was scary to go on an experimental drug, the doctors didn’t really know what other type of treatment to try. At her first surgery, the tumor was 11 cm. They removed part of it, but because it was attached to a major artery they couldn’t remove all of it. Though there was a point in time when it appeared to be gone, the last MRI measured her tumor at around 1.5 cm.
Things had gone without complications for two years, said Riley. She was driving again, doing everything she had previously been able to do, even thinking about going back to work. Then her incision began to swell and change color, and she underwent three surgeries in quick succession, due to infections and other complications.
Before the most recent round of infections, her team of doctors was talking about surgery to remove the tumor. Now, that is on hold as they focus on getting the infections under control. Once it heals, and the infections are gone, she said, they will talk about their next course of action.
Riley was working three jobs at the time of her accident. Fiercely independent, she said it’s hard for her to rely on others. But her support network is extensive, and includes her family, her boyfriend and his family, and many friends, including Kaleigh Russell. Russell is a great source of support for Riley, but she’s quick to point out it goes both ways –Riley was in her wheelchair beside her as Russell gave birth to her son.
There are many difficulties that Riley faces, including not being able to walk without a cane or walker, but she said she takes it one day at a time. When out in public, she uses a prescription walker that has a seat, since she can't get approved for a scooter. Russell said one really difficult thing is when they are out and people either stare, or look away when Riley looks at them. “It’s easier for her when somebody comes up and just asks what happened, what’s going on?” she said.
It’s also difficult when people only ask how she is doing, said Riley. “I’m not the only one going through it,” she said. “How is everybody else that’s fighting with me? I wouldn’t be able to do this alone,” she added.
Update as of Saturday, Riley and Russell returned to Massachusetts General Hospital in Boston, where Riley was hospitalized.
“She was in a lot of pain. Her tumor has grown again but in a place where it’s too dangerous for surgery as of right now. They are going to try chemo again to shrink it before they reconsider surgery. They are trying to get her pain under control so she will be here for a while,” Russell said via email.
Riley was emotional, but poised, as she told her story. “It’s something I have to accept,” she said. And, she added, “There’s always somebody out there that has it worse. That’s what I tell myself.”
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