MUSC’s influence extends far beyond Charleston: all the way to Capitol Hill. Get a behind-the-scenes look at how Pat Votava, an MUSC advocate, navigates the halls of Congress on behalf of the hospital.
On the floor of the U.S. House of Representatives, 17-year-old Rachel Edwards rubbed elbows with some of the most powerful politicians in the country Tuesday afternoon: House Speaker John Boehner, R-Ohio; Rep. Paul Ryan, R-Wis.; House Majority Leader Eric Cantor, R-Va.
What is osteosarcoma?
Osteosarcoma is the most common form of bone cancer diagnosed in children.
It often develops during teenage growth spurts, on the knee or upper arm.
About 400 children are diagnosed with osteosarcoma each year. This form of cancer is more likely to be diagnosed in males than females and more often in black children than white children.
Source: St. Jude Children’s Research Hospital
That kind of access is impressive, even by Washington, D.C., standards.
“I’m a little nervous,” she admitted before she left Charleston. “I’ve never talked to a congressman before.”
But she was just as anxious about the possibility of new clothes from H&M in Washington, because Charleston, for all its charm, doesn’t have an H&M yet. Politicians can hardly compete with big-city shopping.
In many ways, Rachel, a rising senior at Wando High School, is a regular teenager. Texting comes to her as naturally as breathing. She surfs during the summer. She has a boyfriend.
But what makes her exceptional, and the reason that she traveled to Washington this week, is because she’s battled cancer four different times.
“They didn’t think I was going to make it,” Rachel said. “They gave me four to six weeks.”
She shared her story with members of South Carolina’s congressional delegation during her trip to Capitol Hill.
She tells most of it with a smile even though some of the details are grim and the ending hasn’t been written yet.
In 2007, 10-year-old Rachel’s knee hurt. It wasn’t unusual. She was a dancer and a gymnast and joint pain was a fact of her active life.
“It was a little sore. I just wanted to make sure everything was OK,” she said. “They ended up finding a tumor in my knee. So that’s when it all started.”
That tumor turned out to be osteosarcoma: bone cancer. It affects about 400 children a year, according to St. Jude Children’s Research Hospital.
Chemotherapy, radiation and a partial-knee replacement kept the disease at bay for two years. Then it spread to her lungs three more times.
“I have one-and-a-half lungs now,” she jokes.
She also likes laughing about her prosthetic knee, which set off every security checkpoint she passed through in the congressional office buildings.
“That’ll do it every time,” she said as a security guard waved a hand-held metal detector over her body.
Since her first diagnosis, Rachel has spent 150 nights at the Medical University of South Carolina Children’s Hospital during nine separate rounds of chemotherapy and 11 surgeries.
Now, she’s 15 months in the clear.
“They tell me I’m not supposed to have ‘scan-xiety’ after 18 months,” said Gary Edwards, Rachel’s father. “We’ve been right up to 18 months twice before.”
Rachel and Gary Edwards made the trip to Washington this week on behalf of the MUSC Children’s Hospital for the national Children’s Hospital Association Family Advocacy Days.
The Edwards’ message to Congress is simple: Support children’s cancer research.
“I can’t imagine 150 nights in the hospital,” Rep. Mark Sanford, R-S.C., told Rachel when he met her Tuesday.
“Chemo, when you do it, you can feel a burning sensation?” he asked.
“You just feel nauseous. You feel sick, can’t keep anything down,” Rachel said. “I mean, you just kind of feel weak all the time. And it’s not really fun losing all your hair.”
Like many other rising high school seniors, she fielded repeated questions about her plans after graduation.
“I’m looking at USC and C of C (University of South Carolina and College of Charleston). Those are my two top choices,” she said.
Rep. Trey Gowdy, R-S.C., asked her to consider attending law school.
Rachel said she’d rather study marketing and communications so she can work for MUSC to raise money for cancer research — for good reason.
Two years ago, Rachel’s prognosis was bleak. Her fever was spiking that spring and her doctors were stumped. They were able to enroll her in an immunotherapy clinical trial through MD Anderson Cancer Center in Houston that targeted the cancer cells and coated the tumor to keep it from growing. They didn’t know how the disease would respond to the treatment.
Gary Edwards began seeing a grief counselor because he thought his daughter was dying. He also agreed she could have a birthday party to end all birthday parties. It was Rachel’s “Sweet 16,” college graduation and wedding reception rolled up into one big bash.
All this because Gary and Debbie Edwards didn’t think their daughter would graduate from college, dance at her own wedding, or ever turn 16. “It’s not anything I was prepared for,” Gary Edwards said. “We’ve all learned a lot about ourselves, about who we are, about what faith means in our life.”
Rachel did turn 16. And then she turned 17. And now she’s ready start her last year in high school. Routine scans suggest that the treatment worked and her cancer is at bay.
“The darkest moment was finding out I might not make it, but I didn’t really believe them,” Rachel said. “I kind of guessed God had a bigger plan for me.”
Reach Lauren Sausser at 937-5598.