Moment of Crisis

updated 10/31/1994 AT 01:00 AM EST

originally published 10/31/1994 AT 01:00 AM EST

As the health-care debate gathered intensity in Congress last spring, Rep. Jim Moran (D-Va.) staked out a cautiously centrist position on reform. As a U.S. representative, he was, like many of his affluent constituents, well-insured for health care, and he was dubious about the call for universal coverage. Why, he asked, should the government force employers to provide health care for their workers?

The answer hit home on Aug. 13, when Jim, 49, and his wife, Mary, 38, learned that their second child, Dorothy, 3, was suffering from a deadly form of brain cancer, medulloblastoma. The cancer, which afflicts about 600 children every year, began in Dorothy's cerebellum—the area of the brain that controls balance and muscle coordination. Although doctors operated to remove the tumor, they found the cancer had spread around the brain stem to her spine. In mid-September, Dorothy started a painful course of chemotherapy, but her prognosis remains dim: Doctors give her only a 30 percent chance of survival past age 5.

Understandably the diagnosis has devastated Moran, the gregarious, Boston-reared son of a college football coach and a homemdker. A stockbroker, he was first elected to political office in 1979, when he won a seat on the Alexandria (Va.) city council. Moran says the demands of politics helped end his first marriage (from which he has two children) in 1974. When he married Mary Mallet, then a stockbroker, in 1988, he resolved to balance work and family. Elected to Congress in 1990, he made time with Patrick, 5, and Dorothy a priority.

Suddenly, like millions of American wage earners whose health care is tied to employment, Moron's coverage hinges on winning reelection Nov. 8. Should he survive the challenge of Republican candidate Kyle McSlarrow, Moran has vowed to take up the fight for universal coverage of children. "It's unfair for innocent kids to suffer because their parents can't afford to pay, "he says. Moran talked about his family crisis with correspondent Jane Sims Podesta in Washington.

UNTIL LAST FEBRUARY, DOROTHY was almost too perfect to be true. She was an adorable, happy little girl who used to giggle and say, "Daddy, ho-o-old me. Daddy, play with me." We'd sit on the floor of her room, and she'd get out her tea set and serve me coffee. I'd just melt.

Last winter, Mary and I started noticing that Dorothy had lost some of her spunkiness, her bounce. She didn't seem to run around after her brother Patrick as much. Then in May, she started waking up crying in the middle of the night for no apparent reason. We figured she was feeling insecure, so we let her sleep with us. In June, she began complaining when we washed her hair. She'd say, "My head hurts." In early July, Mary and I went to a European security conference in Vienna. When we got back from the trip, the baby-sitter told us she had taken Dorothy to the pediatrician because she'd been throwing up. Mary took her in for a checkup, but the doctor said it was a virus.

By the second week in August, Dorothy was throwing up several times a day. We took her to the emergency room at Alexandria Hospital. She was so dehydrated she needed two IV transfusions. The emergency room doctor told us it was the flu. Neither Mary nor I thought the flu explained her symptoms, but we didn't know what else to do. So we went home.

Within a week, she was throwing up again. Mary took her back to the pediatrician and broke down crying. He agreed to admit her to Fairfax Hospital in Virginia for observation. When she threw up everything in her system, a neurologist suggested a CAT (computerized axial tomography) scan. Afterward he asked me to step into a consultation room. "The CAT scan shows a massive brain tumor," he said. He told me he wanted to move her to nearby Children's Hospital in Washington and operate immediately. I was just stunned. Everything was turned upside down. From that moment on, our lives have never been the same.

As I was driving to Children's Hospital, all kinds of thoughts went through my mind. I began thinking, "I wish it were me in that ambulance. I've lived a full life. Why shouldn't I be the one to go through this?" Having been raised Irish Catholic, I've always had this fatalistic view, these guilt feelings about happiness. My first wife and two older children paid the price for my involvement in politics. I spent too much time away from them. I felt that I'd been given a second chance with Mary. I've been so happy these last several years with her and the children. Now I thought, "Maybe I don't deserve this. Maybe for all life's pleasure, there's an equal amount of suffering."

Dorothy's tumor was malignant. It was the size of a peach, a mass of white that had taken over much of her cerebellum. We explained to her that something bad was growing inside her head that was making her throw up, and it needed to be taken out. We were in the intensive-care unit when she woke up. She was struggling with the tubes and wires from the electrocardiogram and the IV She kept saying, "No, Mommy, Daddy, stop it." She said it over and over. It was awful. Finally they gave her morphine and heavy sedatives. The hospital gave us a room to sleep in. That night, after our friends and family left, Mary and I just held each other and cried all night.

Dorothy didn't respond for three days after the surgery. She was still throwing up. They did an MRI (magnetic resonance imaging), which showed the tumor growing around the brain stem. There was cancer near the pituitary gland, and the beginnings of more cancer in her spine. It didn't seem it could get worse, but it did. Another CAT scan showed a buildup of fluid in Dorothy's brain. They operated the following Monday and inserted a shunt into her skull to relieve the pressure. The shunt seemed to send her into shock. She lay in a fetal position in the bed. The doctors told us that children often respond to extreme trauma by reverting to infancy.

Everything that was happening to Dorothy upset our 5-year-old, Patrick. He kept saying he wanted to talk to her. We brought him to see her at the hospital one day to show him we weren't showering her with attention without reason. He took out his Lion King book and started making noises. When she didn't react, he was disappointed.

But then Dorothy began to respond a couple of days later, and Mary suggested I go to a store that rents Barney costumes. I explained what it was for, and the salesman let me take it for free. So I walked into Children's Hospital dressed in this dinosaur suit. I stood by her bed trying to remember the words Barney sings—she used to love hearing them: "I love you/ You love me/ We're a happy family."

It didn't work. She didn't know who Barney was. I went around to other kids in the hospital, shuffling around in those big slippers. As I left to take the costume back, I realized we had a long way to go.

In mid-September, Dorothy started chemotherapy to kill the cancer cells. It's administered every 2 ½ weeks through a Broviac tube implanted in her chest. The treatment will take two more months. Then, the doctors are strongly recommending radiation of her brain and spine. The problem with doing radiation on young children is that it permanently damages intellectual development. It's probably the most difficult decision we're going to have to make as parents; whether to risk losing part of Dorothy's mental capacity in return for increasing her chances for survival.

Every day now, we see Dorothy regaining her awareness. Recently she said she wanted to watch Barney videos, and she's been asking us to read her favorite fairy tales, Snow White and Cinderella. Developmentally she's almost back to where she was before the operation. But it's painful to watch her get her personality back. We're afraid of losing her.

I remember going up to Capitol Hill last session from the hospital to vote on the crime bill. Afterward I went up to Dick Gephardt to congratulate him on the bill's passage, and he said, "I'm sorry about what you're going through." I was about to lose my composure, so I just said, "Thanks." Republicans as well as Democrats have called and written. President Clinton and Al Gore called, and Hillary wrote a note after she failed to reach us personally.

I've been changed a lot by Dorothy's cancer. I've learned that you have to enjoy your kids when they're healthy and happy. Spend time with them. All the nice words and toys in the world can't make up for not spending time. I used to think the last five years of my life were heaven. Now my idea of heaven is totally different. Heaven will be seeing Dorothy recover.

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