Campaigning for cancer awareness
October 1, 2018
MINTURN — With love and support from family, friends, the local community, U.S. Ski Team members and viral cookies, 17-year-old Vail Ski & Snowboard Academy senior Campbell Sullivan is close to being cancer free. In medical terms she is lesions necrotic, the cancer-causing cells are now dead.
After a year of medical treatment for the rare CIC-DUX 4 cancer, Campbell and her younger siblings Finn and Addie in September marched in Washington, D.C. with Kids v Cancer, a nonprofit dedicated to promoting pediatric cancer research. September is Childhood Cancer Awareness Month.
The road to D.C., which began in September of 2017, was a long and arduous one, consisting of 14 rounds of chemotherapy, 31 rounds of radiation on Campbell's calf, 10 rounds of radiation on her lungs and a metal rod placed in her left calf. Campbell's mom Gibby keeps a diary with dates beginning from the initial diagnosis to future screenings. The one constant throughout is Campbell's megawatt smile that never dulled when she underwent chemo, shaved her head or talked to others about her journey, immediately putting those around her at ease.
More than 4 percent
“More than 4 percent is our main campaign slogan and saying to bring awareness. Almost no new drugs have been developed or passed for kids in the past decade. Kids are getting the same chemo as adults, but in their little bodies. So the kids’ main saying is, ‘I am worth more than four.’ It is true
— we are worth more.”Campbell SullivanVail Ski & Snowboard Academy senior
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Her people skills charmed representatives from congresswoman Jackie Speier's office (D-Calif.), Mike Kelly's office (R-Pa.) and G.K. Butterfield's office (D-N.C.).
Kids v Cancer CureFest —an annual event — arranged for the youths participating in the march to meet with staff from Congress members on Friday, Sept. 14. Groups were split into six or seven children and teens with a leader.
"First the leader would introduce themselves and thank them for their time. Then every kid in the group told their story of why they were lobbying," Campbell said.
"A lot of the kids were siblings whose brother or sister had cancer, while only one other kid in my group had been an actual patient. All the kids in my group were affected by acute myeloid leukemia or acute lymphoblastic leukemia. I was the only one with a sarcoma cancer (CIC-DUX4). Other sarcoma cancers include Ewing's sarcoma, osteosarcoma and rhabdomyosarcoma. After each person told their story we talked about why childhood cancer needs more funding and why it should be a priority."
Cancer is the leading cause of death by disease in children and adolescents in the United States. Yet, according to the National Cancer Institute, all types of childhood cancer combined receive less than 4 percent of U.S. federal funding for cancer research.
"More than 4 percent is our main campaign slogan and saying to bring awareness," Campbell said. "Almost no new drugs have been developed or passed for kids in the past decade. Kids are getting the same chemo as adults, but in their little bodies. So the kids' main saying is, 'I am worth more than four.' It is true — we are worth more."
After speaking to the representatives from the congressional offices, each child gave the representative a list of "asks," which included funding for the Childhood Cancer STAR Act, survivorship, treatment, access and research.
"Our main goal was to get $30 million towards research funding for pediatric cancer," Campbell said. "The STAR Act got past committee, so this was very exciting for us. I learned a lot about the childhood cancer acts Congress is trying to pass and it was interesting to hear other peoples' stories. It was amazing to meet other survivors and fighters."
Cookies for Campbell
There have been other exciting moments and events in Campbell's trek toward good health. After her initial diagnosis, Campbell's cousins started a Facebook page, Cookies for Campbell. The simple request: post a photo of cookies to share your support. And the support came in from well-wishers around the world, many of whom never met Campbell, including U.S. Ski Team members.
When Campbell first shaved her head, her ski coach, Andrew Keating, shaved his.
The Shaw Cancer Center board approved for Campbell to have treatments there. Normally it is for adults only.
Children's Hospital in Denver held a prom for all patients with life-threatening illnesses.
"In fact," said Gibby, "The hospital puts children's needs first. All of the staff at Children's and Shaw were receptive to what Campbell needed in her life in addition to the treatments."
Former Colorado Rockies' pitcher Jason Motte established a foundation to help those with cancer. In the spring of 2018 Campbell traveled to Arizona to watch the Rockies in spring training. She even got to practice her catching skills with the pitchers.
During spring break 2019 she and her family will fulfill her Make a Wish and travel to the Galapagos Islands. She will also participate in September 2019's CureFest.
'Ski my heart out'
Although she missed a large portion of the 2017-18 ski season due to chemo treatments, Campbell is back on snow and did summer training sessions with Ski & Snowboard Club Vail in Oregon and New Zealand. Prior to returning to the snow this summer, she had a metal rod inserted in her left calf for stability.
"If she was a kid who just sat on the couch and played video games, she wouldn't need the rod," Gibby said. But because Campbell is so active a boot top break could keep her out for two seasons.
Much to Campbell's dismay, the rod did not set off metal detectors while going through airport security.
"This year I'm going to ski my heart out," she said as she ran her hand through her blonde hair, which is growing back at an extraordinary rate.
"I'd like to take a gap year and then go to school at either Colorado University, Denver University or the Colorado School of Mines," she said. Although she has not settled on a major she is interested in chemistry, engineering and aeronautics.
Whatever the future holds, including a hopeful "clear of cancer" diagnosis in November, Campbell will face it with her signature smile.