- The Washington Times - Saturday, September 16, 2000

A year ago my daughter Caroline, just 9 years old, succumbed to an ailment we too often view as only an adult disease: cancer.

This is, however, a tragically flawed assumption, as the devastation of cancer knows no age limits. Childhood cancer kills more children than any other disease more than diabetes, cystic fibrosis, asthma, congenital defects and AIDS combined. Cancer strikes 46 children like Caroline every schoolday, forcing them into a cycle of pain, test tubes, needles, multiple medicines and debilitating limitations. The median age at diagnosis is 6, placing the child's entire lifetime at risk.

And 20,000 parents every year like my husband Randy and me must live with horror and confusion upon discovering that a beloved child has cancer.

Unfortunately, Caroline was not accurately diagnosed when she first complained of pain in her leg just more than two years ago. Her doctors, while well-intentioned and caring, lacked the expertise to correctly identify her early symptoms. In fact, Caroline was sent home twice from her pediatrician with a casual observation that she must be suffering from shinsplints and "growing pains." Compounding the nightmare, the initial diagnosis of the type of cancer she had was incorrect, causing further delays, as specific treatments vary for different forms of cancer.

As a result, our little girl did not receive the necessary attention early on in treating her cancer, which reduced her chances for survival. Randy and I still spend part of every day wondering if Caroline's death could have been prevented if we had been able to get treatment started sooner. Sadly, we are not alone in this melancholy world of "what if."

Caroline's story of missed opportunities for early detection and care illustrates an issue we must confront as a nation: How to ensure the best possible treatment for children and teen-agers with cancer. Our priority must be to make certain that children have access to the experts at childhood cancer centers that produce the best results in treatment.

One vitally important step toward that goal is the recent merger of the four main childhood cancer research cooperatives into one, the Children's Oncology Group (C.O.G.). It will address the dilemma faced by parents like us when one set of doctors recommends a certain type of treatment plan for a child with cancer, while another group aggressively pushes a different treatment.

This new merger will lead to a single recommended treatment plan for each type of childhood cancer. It will ensure that 90 percent of children in North America have access to the best standardized care no matter where they live.

But we must do more.

Childhood cancer has a unique set of characteristics and problems, yet research into childhood cancer is at one of the bottom rungs of the funding ladder. Our goal should be to increase funding to a level commensurate with the public health issues and personal challenges that our children face. Clinical research remains the brightest hope for stemming the tide of childhood cancer. Without it, we fail our nation's children and ourselves as a society.

We should also cut through bureaucratic red tape that slows funding to support the most successful cooperative research of our time childhood cancer research. We must ensure that children have early access to cutting-edge cancer-fighting drugs. And pediatricians should be trained to look for even the most subtle signs of cancer.

In addition, we must do more to deal with the pain our children endure as they go through their cancer treatments, especially those in the final days of a losing battle with the disease. As a parent watching my child suffer, I could not comprehend why more relief could not be provided in the hospital compared with what was available in hospice care. The average medical student receives only four hours of training in palliative care (pain relief). The cycle of myth and ignorance surrounding the treatment of pain in this country must change.

Finally, I don't believe discussions about childhood cancer need to be confined to hospital corridors and public policy debates. People can show their support for childhood cancer research by joining Randy and me in wearing a gold ribbon this September to commemorate Childhood Cancer Month.

This gold ribbon is a symbol for hope, for innovation through continued research, for the courage of children in need, and for their families. Wearing the gold ribbon demonstrates our willingness to hold this issue and our precious children close to our hearts.

My hope is to help more 9-year-olds with cancer reach age 10 and to celebrate even more birthdays in the years ahead.

Deborah Pryce, Ohio Republican, is a member of the U.S. House of Representatives. To learn more about Childhood Cancer Month or to obtain a gold ribbon, visit www.ChildhoodCancerMonth.org or www.HopeStreetKids.org.

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