Girl fights cancer four times, wants to help patientsTweet
By Allyson Bird
Office of Development & Alumni Affairs
Rachel Edwards went to the prom and the beach this spring but, more significantly, she went to the prom and the beach without a port in her chest.
For years, the implant provided a way for doctors to administer Rachel’s chemotherapy drugs without using painful needles each time. The port meant convenient treatment, but it also represented a troubling truth: Cancer kept returning to Rachel’s young body, diminishing her chances of survival with each reoccurrence.
|Rachel Edwards walked the runway with her primary oncologist, Dr. Jacqueline Kraveka, at the Charleston Fashion Week 2013 benefit show for the MUSC Children’s Hospital. Photo courtesy of Travis Dew Photography.|
Rachel’s port removal in April marked her 11th surgery and the beginning of a better outlook for the 17-year-old Mount Pleasant girl. Her father, Gary Edwards, explained that, until then, Rachel’s doctors delivered good news cautiously.
“We would hear things like ‘grossly unremarkable,’” he said. “‘Remission’ is a word we had never heard -- until now.”
Rachel lost her hair twice, relied on home schooling for much of middle and high school and spent several summers indoors and in a hospital bed. But even after beating the cancer inside her own body four times, she wants to keep fighting for other young patients.
“I don’t want to see any other kids going through it,” Rachel said. “I want to be an advocate to bring enough money for cancer research at MUSC.”
With one more year at Wando High School and then college ahead, she works toward her goal now by sharing her story with other patients and people who can help them. Most recently, she traveled to Washington to tell lawmakers on Capitol Hill why they should support funding for pediatric medicine.
Rachel’s first cancer diagnosis came when she was only 10 years old. Her parents took her to see a pediatrician after her knee hurt during gymnastics training. For the next two years, she spent 159 nights in the hospital undergoing treatment for osteosarcoma, a solid tumor bone cancer.
While most cancers travel from tissue to bone, this disease takes a reverse path. Rachel’s illness required a shinbone replacement and then more chemotherapy, only to have a tumor appear in her lung.
More than a year passed, but the disease returned again in January 2011. By then, Rachel’s chance of survival had dropped to about 10 percent.
Her doctors enrolled her in a drug study, and the treatments successfully staved off the cancer. But just months later, doctors found a tumor in Rachel’s upper lung and lymph nodes and, yet again, Rachel traded school for treatment and kept her tears to herself. She only broke down once, on a phone call with a counselor she met at Camp Happy Days, a summer getaway for pediatric cancer patients.
“Only one person heard me cry when I had a diagnosis,” Rachel said. “One total.”
She emerged from her childhood with sharp wit, consuming empathy and a belief that she has a God-given purpose in life to help future pediatric cancer patients. From radio announcements to golf tournaments and fashion shows, Rachel knows how to work a crowd. She stopped bringing pre-written speeches after a while and decided to just tell her story.
“I used to get nervous,” Rachel said. “Now it’s just kind of routine to get up and talk to people. Since I’ve gone through this, I feel like I can just kind of live with most of the things that would get teenagers worked up.”
Her father, managing director at the regional marketing organization Coastal South Carolina, calls his daughter’s recovery a combination of “God-ordained miracle and wonderful, wonderful science.”
“As a parent, I can’t tell you how cool it is that I work in the shadows of MUSC,” Gary Edwards said. “I just always thought that it was supposed to be for other people.”
The Edwards family refers to Jacqueline Kraveka, M.D., [Pediatrics Hematology/Oncology] as “St. Jackie.” She led Rachel through aggressive treatments and became qualified to administer Rachel’s clinical trial in 2011 through MD Anderson in Texas. Instead of traveling, Rachel received all 48 treatments at home and under Kraveka’s care.
“We didn’t throw in the towel and say there’s nothing else we can offer,” Kraveka said. “I spoke with other experts around the country to see what other drugs are available, drugs that are approved for adults. We stopped looking at the numbers. We knew the odds were against us, but we still had to try.”
Kraveka stays in touch with the Edwards family, and Rachel’s parents invite her to violin concerts and school musicals. Kraveka recently watched Rachel perform in her high school’s production of “Grease.”
“To see her up on stage singing and dancing,” Kraveka said, “was amazing.”July 10, 2013