Families spread awareness of childhood cancerWritten by Staff Reports | | email@example.com
By Sura Khuder
Childhood Cancer Awareness Month in September may have passed, but the mission of spreading awareness is a full-time commitment for hundreds of local cancer survivors and their families and friends.
Ashleigh Kussman, a third-year medical student at the University of Toledo, was diagnosed with acute lymphoblastic leukemia (ALL) when she was 11 years old.
Although she is cancer-free today, the 27-year-old Kettering, Ohio, native still suffers daily from the effects of the brain radiation she received as part of her cancer treatment, including painful migraines, dizziness and difficulties with comprehension and communication. She recently returned from a four-month medical leave after undergoing brain surgery due to bleeding in one of her benign brain tumors caused by the radiation. Even after the surgery she is still at risk for malignant brain tumors and may never be finished with brain surgery.
Children diagnosed with ALL today no longer receive whole-brain radiation treatment because it was proven to cause more harm than good, she said.
Kussman’s story is not peculiar to childhood cancer survivors. According to a study by St. Jude’s Children’s Research Hospital that followed such survivors, 98 percent had long-term side effects ranging from secondary cancers, heart conditions, lung problems and neurocognitive deficits. Among these, 80 percent will have a disabling or life-threatening condition by age 45.
“Something no one tells you is the long-term side effects of childhood cancer,” Kussman said. “Even though there is an 80 percent survival rate for childhood cancer patients, you have to ask about the quality of life these patients endure after their cancer is cured.”
Lack of funding
Research in childhood cancer is also severely underfunded, Kussman said, pointing to the fact that less than 4 percent of the National Cancer Institute’s (NCI) budget goes toward childhood cancer.
“While 60 percent of drug companies sponsor adult cancers, zero percent sponsor childhood cancer. There have only been two drugs specifically made for childhood cancers in the past 20 years, but there have been hundreds of drugs for adults,” she said.
There is no pediatric oncologist on the NCI’s National Cancer Advisory Board.
“If you don’t have [a member on the advisory board], you aren’t going to have your interests supported,” Kussman said.
Dr. Crawford Strunk, a pediatric oncologist at ProMedica Toledo Hospital, said there are a number of factors that play into the lack of funding for childhood cancer, one being the relative volume of patients seen per year.
“[When] you think about the number of women diagnosed with breast cancer in a year, it’s somewhere around 150,000 to 170,000 women. Contrast that to pediatrics, where we see 13,000 kids diagnosed with cancer in a year. So with one type of cancer, there is a tenfold difference in the number of people diagnosed with it,” Strunk said.
Close to home
On July 2009, Vonnie Bell’s 9-year-old son Connor was diagnosed with a cancerous bone tumor above his left knee.
To stop the cancer from spreading, the tumor had to be removed along with part of his leg.
“You hear that childhood cancer is rare, but when it hits your child and when you’re at the hospital and you see new kids coming in constantly, it’s not rare. Until you are sitting there and you literally have kids die around you, you don’t realize how bad it is,” said Bell, an employee at Dana Holding Corporation. “Our normal was gone. We were immediately thrown in this world of childhood cancer.”
Bell and her husband, Dave, who live in Maumee, elected for Connor to undergo a rotationplasty. The procedure involved attaching Connor’s two long leg bones.
“This is a way to turn above-the-knee amputation to a below-the-knee amputation and have better functionality and not have problems such as phantom pains,” Bell said.
The rotationplasty allowed Connor, who now has a prosthetic leg, to run and swim — his two favorite activities — in a way a full leg amputation wouldn’t have.
Like Connor’s treatment, procedures for childhood cancer are often extreme.
“These treatments that we have mutilate children,” Kussman said. “We should be working toward more targeted therapies that aren’t so mutilating and toxic toward children. We shouldn’t handicap children to treat their cancer. We have the technology, but developing these treatments only comes with more awareness.”
The Bells said they wish childhood cancer wasn’t so overshadowed by fundraising efforts for other types of cancer.
“Breast cancer is easily associated with pink, but not many people know gold is for Childhood Cancer Awareness Month,” Bell said. “During September, there were already advertisements for Breast Cancer Awareness Month.”
Last year, advocates collected more than 20,000 signatures on a White House petition to illuminate the White House in gold light. Despite reaching the required number for the president to reply, the request was “politely declined,” Kussman said.
“They decorate the White House pink for breast cancer. If they can support breast cancer, which is the No. 3 disease killer of women, why can’t they support the No. 1 disease killer in children?” Kussman said.
In 2008, the U.S. Congress unanimously passed the Caroline Pryce Walker Conquer Childhood Cancer Act, which vowed to bring more awareness to and increase funding for childhood cancer research; however, Kussman said five years later funding hasn’t increased.
“These kids are our future. To cure 100 percent of them would be wonderful. We need to support it and the research to go along with it,” Strunk said. “Each child we save represents a lifetime of a productive member of society. With each child we save it’s another life that can be fulfilled in this country. That’s a huge deal.”
Tags: Breast Cancer Awareness Month, Caroline Pryce Walker Conquer Childhood Cancer Act, Childhood Cancer Awareness Month, Dr. Crawford Strunk, lymphoblastic leukemia (ALL), National Cancer Advisory Board, National Cancer Institute (NCI), ProMedica Toledo Hospital, rotationplasty, U.S. Congress, University of Toledo