BROOKSVILLE, Fla. (AP) — Like a lot of teen girls, Faith Brown has read The Fault in Our Stars, the popular novel about two teens who fall in love at a cancer support group.
But Faith needed more courage than most to make it to the end and learn the eventual fate of Gus, who lost a leg to osteosarcoma.
It’s the same cancer Faith, 14, learned she had last year.
Osteosarcoma is a rare, solid tumor cancer of the bone that targets adolescents, striking primarily during growth spurts.
When the Brooksville girl complained last year of pain in her right knee, her parents figured it was because she fell while out playing. But the pain didn’t go away, so they took her for an X-ray, then an MRI.
“That’s when they found it,” said Kathy Brown, 47, Faith’s mother. “There was a mass in her knee that wasn’t bulging out. It was just 3 to 4 centimeters in the growth plate in her knee. We were lucky, we caught it really early.”
Faith had to go through nine months of chemotherapy. But unlike the fictional Gus, she avoided amputation.
In June 2013, surgeons at All Children’s Hospital Johns Hopkins Medicine in St. Petersburg removed part of her right thigh bone, shin bone and the knee joint. In their place: titanium rods and an artificial knee.
The fact that Faith’s cancer was caught early was key to her getting this limb-sparing surgery. Doctors must remove the entire tumor as well as enough healthy tissue around it to offer a margin of safety. Yet they must preserve as many tendons, nerves and blood vessels as possible so the limb functions well.
If the tumor is too large, amputation can be the only choice.
Today, Kathy and David Brown’s family photo collection includes a shot of the doctor demonstrating the implant before the surgery, and X-rays showing the gear nestled into Faith’s leg.
Within weeks of the surgery, Faith started physical therapy that would last six months. “She had to train her brain and her leg to work together again, especially how to take a step up or down stairs,” said her mother.
Faith said the implant no longer feels strange, though sometimes she hears it clicking.
“Sometimes it does affect how I walk,” she said, “I get a little limp on the right side if I’ve been walking for a while and get tired.”
She can no longer jump on a trampoline or play contact sports. But she swims just about every day and hopes to try out for the swim team when she enters high school this fall.
“If you didn’t know her story and saw her walking down the road, you wouldn’t know she had limb salvage surgery,” her mother said. “She is doing great.”
Doctors will watch her growth to keep her legs even. She also must be monitored to make sure the cancer has not returned.
Faith’s oncologist, Dr. Damon Reed, directs Moffitt Cancer Center’s adolescent and young adult cancer program. He said osteosarcoma is rare — about 400 new cases are diagnosed in the United States each year. Moffitt sees about a dozen new cases a year.
As recently as the 1970s treatment for osteosarcoma almost always involved amputation — one famous patient back then was Sen. Edward Kennedy’s son Ted, who today practices law in New York.
In those days, only 20 percent of patients survived. By the early 1980s, more doctors were giving chemotherapy along with surgery and five-year survival surged to 70 percent.
But Reed, noting that there haven’t been new treatments for osteosarcoma since the 1980s, believes science can do better.
With support from Tampa-based Pediatric Cancer Foundation, Reed is looking into new drug combinations to improve the survival rate and make treatments less toxic to patients.
The foundation, started by two women whose children survived cancer, focuses on cancers that don’t get a lot of research attention. Chief among them is osteosarcoma.
Reed and his team have identified a group of more than 50 drugs that they will test in different combinations in lab animals. If they are successful, then they will seek FDA approval for human clinical trials.
All the drugs are approved to fight other forms of cancer and are known to be safe in humans, but the research process will be challenging.
“It’s going to be hard and it will take a lot of work to get there,” Reed said, “but that’s no reason not to try.”
It took Faith a few days to tackle the last three, tear-jerking chapters of The Fault in Our Stars.
Personal as the story is to her, she wasn’t about to miss the movie version.
“I knew I would have so much in common with it,” said Faith, who starts ninth grade this year. “I liked it.”
Her mother and father hope the book and film raise awareness of osteosarcoma. Kathy Brown wants parents to be aware of the symptoms, though it is a rare condition, and recognize the importance of taking action if a child complains of persistent leg or joint pain.
“It may not be what we used to call growing pains,” she said.
And if you’re going to see the movie, she recommends you bring a box of tissues.
“It was very real for us,” she said. “We cried through the whole movie.”