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| Photo By David Sorcher |
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Shayna Flannery, age 7, is beating cancer. Now her
mother, Ellen, is working to help other kids do the
same.
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A reflection of light saved Shayna Flannery's life. During a Christmas Eve service seven years ago, parents Sam and Ellen Flannery noticed something unusual in their 5-month-old daughter's eye. That something turned out to be retinoblastoma, a cancer that consumed Shayna's right eye and deposited six tumors in her left eye.
Now a happy, well-adjusted 7-year-old, Shayna has no recollection of the ordeal itself or the treatment that saved her life.
"She's doing great," her mother says. "She lost one eye, but she has perfect vision in the other. It's totally unnoticeable to people who don't know. There's no ongoing issues and nothing limiting her."
The experience prompted Ellen Flannery to make a dramatic and unexpected change to her life. With support from friends and family, she quit her job and founded Cancer Free Kids (CFK), a local nonprofit organization that funds pediatric cancer research through donations and fund-raising events.
"I knew I would want to be involved in fund-raising in some way but never thought of starting my own organization," she says. "I became determined to help raise money for research because I learned how under-funded it is by talking to the doctors and researchers that I met during (Shayna's) care."
Research works
Flannery says the dearth of funding for pediatric research led her to start her own organization. CFK's mission is to continue funding research until 100 percent of all childhood cancers are cured.
"We exclusively fund pediatric cancer research because we believe that's the best way to make a real difference in the fight against cancer," Flannery says. "We're bringing the cause closer to the donor by not only showing donors that their dollars do make a difference -- because we donate at least 85 percent of every dollar to research -- but we also let our donors get to know the researchers, know about the research and the results. We want to make the experience of donating to this cause a more personal experience for people."
This year CFK awarded $20,000 in grants to two researchers working on promising projects. The first, conducted by Parinda Mehta and Stella Davies, focuses on improving donor matching in bone marrow transplants. The second project, conducted by Xiaoyang Qi, involves testing of a new type of therapy for neuroblastoma, a type of cancer responsible for tumors in babies and young children.
Financing early work with seed money often spawns larger research projects funded by the federal government, according to Dr. Frank Smith, director of hematology oncology at Cincinnati Children's Hospital. Smith, who sits on the advisory board for CFK, says he became involved with the organization for a number of "selfish" reasons, primarily because CFK is trying to eliminate childhood cancer.
"Ellen's group is fantastic," he says. "It's nothing short of amazing what they've done to raise money to fund these first research grants. As a Cincinnati-based organization, it's off to a great start. The hope is it will eventually build and grow into a regional and even a national organization."
Smith says he's seen dramatic improvements in the field since he began practice in 1987, but for solid proof of medical advances he looks back 50 years, when pediatric cancer was virtually a death sentence.
"We've gone from 50 years ago where no one was cured to today where 70 percent of children are cured of their disease," he says. "That's happened over the past 50 years because of research."
The high success rate can be credited primarily to clinical research studies in which 70 percent of all children diagnosed participate, Smith says.
"The reason they're cured is because the vast majority are treated on research clinical trials," Smith says. "The studies provide a better understanding of the disease so scientists can determine treatments."
Watch for signs
A.J. Seymour fell into the 70 percent of children treated in clinical trials when he was diagnosed with leukemia at age 2. His mother, Diane Seymour, says she and husband Kyle became aware of A.J.'s condition because he was experiencing severe leg pain.
A.J.'s elevated white blood cell count put him in the high risk category, making him eligible for a clinical trial conducted by Cincinnati Children's Hospital. Diane says the decision to enroll A.J. in the study was completely pragmatic.
"The prognosis for survival in the study was still 70 percent," she says. "All the medications were FDA approved. They just used them in different combinations and for a longer period of time. Part of the reason we're doing the study is because it will help others in the future."
As an active 5-year-old, A.J. is nearing the completion of his three-and-half-year treatment regimen. Diane says A.J.'s battle with cancer has had a poignant impact on her older children, so much so that daughter Kimberly decided to raise money for CFK on her own.
"Kimberly wanted to do a project that she could see making a difference," she says. "Cancer Free Kids seemed to be a good fit partially because it's local and because their goal is to find a cure."
Last year Kimberly raised more than $1,000 for the organization by selling holiday cakes for Halloween, Christmas and Easter. Her mother says she plans to continue her efforts this year with her favorite holiday, Halloween.
As part of National Childhood Cancer Awareness Month in September, CFK plans to continue fund-raising efforts with "Chow Down for Charity." The event allows area restaurants to donate a portion of proceeds collected during a specific day to CFK.
Pediatric cancer still is considered rare in the U.S., affecting approximately 10,000 children per year. Symptoms often mask themselves as common infections or viral illnesses, according to Smith, so parents should be aware if symptoms persist over a period of time. As in adult cancer, early detection in pediatric cancer is the key to survival.
"If the illness doesn't improve after a reasonable amount of time, they should contact their pediatricians," Smith says. "Pediatricians are trained to be suspicious of anything out of the norm and will often refer children to an oncologist for testing."
While the cure rate of 70 percent might sound encouraging, Smith remains unhappy with that number.
"Luckily the disease is rare, but we're still losing 30 percent," he says. "We have to work harder to find better therapies so we can find a cure for 100 percent."
For more information on CANCER FREE KIDS or CHOW DOWN FOR CHARITY, call 513-652-KIDS or visit their Web site at cancerfreekids.org.