Family fights for pediatric cancer research

(by Christine Bryant, Eastside Editor - June 25, 2009)

Eden Adams was 4 when she was diagnosed with neuroblastoma, a rare cancer of the nervous system typically found in very young children.

Hannah Lewis was only 5 when after complaining of headaches, was diagnosed with a rare soft tissue tumor called rhabdomyosarcoma.

In April 2007, the two children met at Nationwide Children's Hospital, quickly forming a bond that would later unite two families and begin a journey that would forever change their lives.

Family support

Two years ago, both Eden's father, Rourke Adams of New Albany, and Hannah's mother, Jessica Lewis of Reynoldsburg, were single parents, working to not only juggle hospital schedules for their daughters, but also care for boys at home.

"We began to see each other at the hospital more and more, and soon we began to bring the kids together to play and hang out," Lewis said. "It was a wonderful relief to be around another family where such things as broviac catheters, daily shots of neupogen, pain medicine, etc. were normal."

Lewis says she and Rourke fell in love as the children formed lifetime bonds.
As the two children fought for their lives, they never stopped thinking about others who were going through the same thing. They wanted to help other kids like them, and reached for the top by lobbying on Capitol Hill for support of pediatric cancer research.

Though last summer Eden struggled as she experienced daily pain, she insisted she travel to Washington for the signing of the Conquer Childhood Cancer Act.

In 2008, Congress unanimously passed a bill authorizing $150 million to expand pediatric cancer research and awareness, and to create the national childhood cancer research registry.

"It was a very tough job driving to Washington, D.C. with Eden in active treatment at the time, but when I asked Eden if she thought she could make it, she said, 'If it will help other kids with cancer, we should go,'" Lewis said.
But with the current bleak economic situation and a growing federal deficit, everything including childhood cancer funding is in danger of being cut, said Sheri Singer, with the Cure Search National Childhood Cancer Foundation.

Despite the progress in childhood cancer, about one in five children continues to die, and cancer remains the No. 1 leading cause of childhood death from disease, Singer said.

Each year, more than 12,500 children are diagnosed with cancer, according to Cure Search, with more than 2,000 young lives lost.

At 8 years old, Eden was one of those lives.

Continuing the fight

Though Eden lost her battle to cancer, her family is continuing the fight. They traveled to Washington, D.C. this past week - one of more than 400 families - to meet with congressional representatives to urge them to fund childhood cancer research in 2010.

"Eden left us in December, and although to go to D.C. and lobby for Cure Search without her is painful, as a family, we feel she would want us to go in her honor," Lewis said. "She made the trip last year while in daily pain, but she wanted to help other kids like her."

Cure Search, Lewis says, "single handedly united the entire country of pediatric oncologists with the Pediatric Oncology Group."

Every child diagnosed with cancer is examined closely by the POG and given the same latest treatments regardless of location, she said. The organization also keeps all the data from each child's treatment and long-term effects.

"We do not want what Eden went through at the hospital to be lost simply because there is not enough money to keep her medical records analyzed," she said. "Our only solace in losing her is the hope someday what she went through will help a doctor help another child with neuroblastoma. Without Cure Search, Eden's legacy could be lost forever."

Riding for a cause

Hannah currently is doing well, Lewis said, but will receive scans every four months for the next two years.

The two families that have now become one through the bond of their courageous children have kept the parents grounded, she said.

Hannah's brother, 15-year-old Riley Adams, will ride in Pelotonia, Ride with Lance Armstrong, in August in honor of his sister.
He has a goal of $4,000 in donations, which can be made for Riley, rider No. 2931, at www.pelotonia.org.

Hannah will raise money at the fashion show, "Nellie's Catwalk for Kids," July 31 at the Hilton of Easton.

For tickets, go to www.catwalk4kids.org.

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