Sunday, June 11, 2000

Lawmaker spotlights daughter's battle with cancer

By Katherine Rizzo
The Associated Press

        WASHINGTON — Rep. Deborah Pryce, swallowing back tears, described in a wavering voice the battle to save her only child and the decision to bring 9-year-old Caroline home to die.

        Caroline was being dosed with radiation to try to shrink tumors in her brain and on her spine. The growths were caused by the nerve cancer neuroblastoma, a disease that strikes about 500 children in the United States each year.

        “She couldn't relax,” her mother said. “She moved around and it was extra painful to her.

        “They wouldn't even allow her to have a Valium,” Ms. Pryce said. “We were just asking for one small dose, and it was denied her.”

        That was the day Ms. Pryce, a Republican from Columbus and her husband, Randy Walker, decided to check Caroline out of Children's Hospital and into a home hospice program, with different rules for dispensing medications.

        Caroline died three days later, on Sept. 4.

        Ms. Pryce kept much of Caroline's battle private while the family was focused on treatment, declining to discuss early misdiagnosis or even to confirm which rare childhood cancer they were fighting.

        Now Ms. Pryce is talking more openly. She gave an interview to Ladies' Home Journal and started a program to raise money for pediatric cancer research and provide help to families coping with childhood cancer. “Hope Street Kids” will hold its first fund-raising event this week.

        On Wednesday, Ms. Pryce was the first witness for two days of hearings into cancer care and the way the government handles cancer research and inquiries from families in search of access to clinical trials.

        “I think pediatricians and parents need a wake-up call,” she said. Both, she said, must keep in mind that cancer kills more children than any other disease, and doctors “should be trained to look for even the most subtle signs of cancer and improve screening of children for the disease.”

        Pediatricians also should be trained to take seriously the symptoms of young patients, she said.

        Caroline's cancer treatment could have started sooner, but her first few complaints of a sore leg didn't prompt her doctors to order any tests, Ms. Pryce said.

        “We were told at first it was shin splints, and then we were told it was growing pains. Our pediatrician group saw her at least twice and I think three times. She was even dragging her leg behind her.”

        A pediatrician finally ordered a bone scan, the results of which indicated cancer. Specialists at Children's Hospital in Columbus later diagnosed Caroline with Ewing's sarcoma, a bone cancer.

        After that came two grueling weeks of tests at the National Institutes of Health in Bethesda, Md., and a new diagnosis of neuroblastoma, a rarer form of cancer with a lower survival rate.

        Both the tests and the treatment were painful to Caroline, and Ms. Pryce wonders still why her little girl had to endure so much.

        “In my mind, there is absolutely no reason there has to be such a bright line between the pain relief offered at the last stage of aggressive treatment in a hospital and that offered in a hospice.”

        (A message was left with the Children's Hospital public relations office for comment on pain-relief policy in pediatric cancer cases.)

        The cancer hearings are being held by the House Government Reform Committee. Its chairman, Rep. Dan Burton, R-Ind., said he lost both his parents to lung cancer last year; his wife, Barbara, is a six-year survivor of breast cancer.


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