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After battling cancer four times, tackling Capitol Hill no problem for teenager
Dawn Brazell | News Center | July 8, 2013
|Rising senior Rachel Edwards reflects on what it was like on Capitol Hill as an advocate for pediatric cancer research and MUSC Children's Hospital.|
Rachel Edward’s 15th birthday bash was to be the party to end all parties. It was to be her Sweet 16, wedding reception, graduation drop-in and all other milestone life celebrations rolled up into one.
One hundred of her closest friends and family were invited to the Legare Waring House for the surprise celebration that sported a three-layer cake, decked out in her favorite colors of pink and green.
“There was food everywhere, and I love food a lot,” she said of the chocolate fountain, barbeque, macaroni and cheese and all her other favorite foods that were laid out. “It was so amazing. It was crazy. They had a bar with a Rachel-tini, which was Sprite and pink lemonade mixed together.”
Edwards, now 17, describes the event with the excitement you’d expect from a typical teenager, except there’s a depth of maturity about her. It comes from her having battled cancer four times, endured five different rounds of chemotherapy, 11 different surgeries, and most recently a clinical trial at MD Anderson Cancer Center. Edwards, who has spent 150 nights at MUSC’s Children’s Hospital, has been fighting this battle since she was 10, when doctors removed a tumor in her knee and she was diagnosed with a rare bone cancer called osteosarcoma.
She underwent a partial knee replacement at age 10, chemotherapy and radiation. Just when they thought she was clear, the cancer reappeared, spreading to her lungs three times. Two years ago, at 15, Edwards’ fever spiked, and the prognosis looked bleak yet again. Her father consulted a grief counselor, and they planned the big birthday bash, as they worked with MUSC doctors Michelle Hudspeth and Jacqueline M. Kraveka to find any clinical trials that might be able to help their daughter.
“After the last diagnosis in 2011, the prognosis wasn’t good. They gave me about four to six weeks to live. But Dr. Kraveka and Dr. Hudspeth didn’t give up on me. They found a treatment plan out of MD Anderson, and it helped me. I had a clear scan just last week.”
The trial at MD Anderson Cancer Center focused on immunotherapy that targets inhibiting the growth of cancer cells. Edwards is thrilled she was able to get into the trial and that it is working. It’s a story she recently got to tell in Washington, D.C., where she covered the halls of Congress on behalf of MUSC’s Children’s Hospital as part of the national Children’s Hospital Association Family Advocacy Days.
She got to rub shoulders with the likes of House Speaker John Boehner, R-Ohio and House Majority Leader Eric Cantor; and representatives Trey Gowdy, R-S.C., Mark Sandford, R-S.C., Paul Ryan, R-Wis., Joe Wilson R-S.C., Jim Clyburn D-S.C, Jeff Duncan R-S.C., Mick Mulvaney R-S.C., and Tom Rice R–S.C.; and U.S. Senators Tim Scott R-S.C. and Lindsey Graham R-S.C.
Calling it an enlightening and life-changing experience, Edwards said she has a better take on politics now and how money gets pulled to fund projects. Her goal was to raise awareness of the need for more pediatric research. She took a page from her father, Gary Edwards, who used to send a photo of her attached to applications for clinical trials. It puts a face to the need.
She had her own baseball-style cards with her photo and life story that she took up to Washington, D.C., to hand out to congressmen. It was an empowering experience, advocacy work she recommends for others who battle life-threatening diseases.
“You need to get the word out about all the different diseases that need research. You need to put a voice to it. When I was trying to get into the studies, my Dad sent pictures to all of the doctors to get speedier results. It actually helped. We were put into a study with only 13 spots left. It’s putting a face to a story – not just seeing it on paper. It makes all the difference in the world.”
Pat Votava, director of governmental relations and grants for the Children’s Hospital, accompanied Edwards to Washington, adding that the articulate teen was just the face needed. The rising Wando High School senior is beautiful and energetic, and has an incredible, courageous story. “We’ve been taking children up there for 10 years, and they remember every single one,” she said of the legislators, some of whom pin up the baseball-style cards the child advocates bring.
Edwards said she found the representatives and senators to be very accommodating. “They really just listened and heard me out. They didn’t push me to the side. I had a voice.”
The highlight of her trip was having Gowdy take her onto the House floor and introduce her to Cantor, who has a bill to fund more pediatric research. “It’s not every day you go to Capital Hill and speak out for something you believe in,” she said. “It was really cool. It’s one of those places you never expect you’ll be able to go.”
Votava said Edwards did phenomenally well, and their trip came at an ideal time, with a bill in the house that takes money from the check off box on taxes to put into the National Institutes of Health (NIH) budget for pediatric research. There also is a bill in the Senate to direct NIH to put more money towards pediatric research. “Rachel was the living proof of how important it is and what a difference this makes. She really just brings this home,” she said.
“She put a face on Children’s Hospital. This was so important. Every congressman that she met with and every senator was really entranced with what her story was. She was in their office saying they gave me four to six weeks to live and here she is sitting in their office – that is an incredibly powerful statement. It’s rather mind blowing.”
Though some congressmen advised her to go into law, right now Edwards has her heart set on going into development at MUSC to raise money for pediatric research, a need she sees as terribly underfunded. In the meantime, Edwards holds down two jobs, looks forward to her senior year at Wando High School, keeps an eye out for good clothes sales, prays for clear health scans and reflects on her time in Washington, D.C., and how she can continue making a difference.
“I still live every day like it could be the last,” she said, adding that it helps keep life in perspective. “You learn not to stress about the small stuff. Little things don’t upset me.”