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To Save Her Daughter's Life

By Sarah Pekkanen
From The Washingtonian

    It's election night 1994. Ballons float through the grand ballroom of the Hyatt Regency Crystal City in Arlington, Virginia. A thousand cheering supporters chant the name of the man they've come to celebrate: Democrat Jim Moran, who's just been re-elected to his third term in Congress.

    It has been the worst campaign of his life. Upstairs, an aide knocks on the door of the Morans' suite. "It's time to declare victory, Jim," she says.

    "Give me a few more minutes," Moran answers. He walks to the bed where his wife, Mary, holds their three-year-old daughter, Dorothy. Dark circle ring the child's eyes, and her skin is the color of chalk.

    "Are you ready to come downstairs with Daddy?" Jim asks, stroking the girl's wispy brown hair.

    Dorothy nods. The tall Congressman cradles his daughter, and she rests her head on his shoulder.

    When the Moran family—Jim, Mary, Dorothy and five-year-old Patrick—arrive in the ballroom, the crowd bursts into applause. Staring into the sea of faces, Jim remembers other nights like this, when winning was the most important thing in his life.

    He approaches the microphone and thanks his supporters. Then he looks down at Dorothy and thinks about all his family has endured in the past three months. While he fought to keep his Congressional seat, his wife was waging a far more important battle. There is one more person to thank.

    "Now," he tells the crowd as he looks at Mary, "I want to introduce the woman who is saving my daughter's life."

    "My Head Hurts." The first clue that something was wrong with Dorothy slipped by unnoticed. It came on a summer evening in 1994. Jim was washing his daughter's hair, and she flinched from his touch. "My head hurts," she said.

    The vomiting began in July. A pediatrician diagnosed flu and recommended fluids, but as weeks passed, she went into a steady decline. Her eyes grew glassy. She moved more slowly. By early August, Dorothy was throwing up after every meal, and her weight dipped: 35 pounds, then 30, then 25. Jim and Mary were now convinced something was very wrong.

    On August 9, Mary drove Dorothy to the pediatrician's office. "You can't tell me it's the flu again," Mary said "Look at how thin she's gotten" She turned away tearfully. "I'm afraid she's going to die."

    That afternoon Dorothy was hospitalized for tests. Three days later a new doctor entered Dorothy's room "Has she had any problems with balance?" she asked.

    "No, not at all," Mary answered.

   To eliminate all possibilities, the doctor ordered a CAT scan of Dorothy's head. Mary thought it would take a long time, but in less than five minutes the technician said he had everything he needed. Jim picked up Dorothy, and as the Morans turned to leave, something made Mary look back. "Good luck to you all," the technician said softly.

    Mary went home for a quick shower while Jim stayed with Dorothy. The hospital room was still, and Dorothy was asleep when a doctor appeared in the doorway. He motioned Jim toward a private room down the hall. "Dorothy has a massive tumor in her brain," he said.

    The doctor put his hand on Jim's shoulder as the Congressman cried.

    "Little Warrior." The cancer in Dorothy's brain was medullo- toma, a brain tumor that occurs mostly in children. The lemon-size mass of malignant cells had invaded the cerebellum, which controls balance and movement, as well as the brain in stem, which governs breathing and heart rate.

    As the tumor grew, it blocked the drainage pathway for the spinal fluid produced by the brain. The accumulating fluid was slowly compressing the brain stem at the base of the skull. If this relentless pressure ware left unchecked, it would cause Dorothy's heart to stop beating.

    Surgery was scheduled for the next day at Children's National Medical Center in Washington, D.C. To remove Dorothy's tumor, neurosurgeon William Chadduck would have to open the back of her skull, exposing the cerebellum.

    He would then peel away the tumor from the brain stem and remove an extension of the tumor in the upper spinal canal.
Five hours after the surgery started, Chadduck came to see the Morans in the waiting room. "It looks good," he said. He had cut away every bit of visible tumor, and it appeared that Dorothy was in the low-risk category. This meant her chances of beating the cancer were improved.

   Mary and Jim hurried to the intensive care unit. Dorothy's head was swathed in a white turban, and tubes connected her body to machines that hummed and beeped. "You're going to have to be a little warrior," Mary whispered to her unconscious daughter. "You have to fight really hard to get well." She and Jin held their daughter's limp hands into the night.

   Two mornings later Chadduck entered her room. He had just examined Dorothy's new brain scan, which showed areas he wasn't able to see before. Its unmistakable message, he gently told the Morans: cancer had spread to Dorothy's spine. Now she was in the high-risk category.

    The next few hours passed in a blur of tears and prayer. That afternoon, Jim and Mary met with Chadduck and neurologist Roger Packer, who laid out their plan of action. The doctors wanted to give Dorothy five powerful drugs at a dosage just below lethal levels. After five months of chemotherapy, Dorothy would undergo radiation.

    Even with the best treatment, Dorothy would be fortunate to reach her fifth birthday.

    Jim sat at Dorothy's bedside as she remained in a coma-like state. A self-reliant man who was accustomed to controlling his fate, he was powerless to help his daughter.

    When despair overwhelmed Mary, she'd pace the hospital corridors. One evening she passed a couple whose young girl had been injured in a bicycle accident. Seeing their tortured faces, Mary knew their child had died.

    She leaned against a wall and had a sudden realization: As long as Dorothy still has breath n her body, we have hope.

    Rallying Strength. While buying books for Dorothy, Mary discovered a self-help book about fighting cancer. She read that the author had been told ten years earlier he had lung cancer and was given a life expectancy of 30 days. But he refused to accept his sentence and concentrated on keeping his body as healthy as possible. One thing he did was take ten grams of vitamin C a day. Mary found a piece of paper and wrote on the top lime " ten grams of vitamin C."

    Mary bought other books and devoted herself to learning about the connection between nutrition and the immune system. Could these be a way, she wondered, to make Dorothy's immune system so strong that she could overcome the cancer?

    About two weeks after the operation, Dorothy regained consciousness. Determined to rally here daughter's strength and with power, Mary began an evening ritual. Lying in bed with her arms around her frail daughter, she'd teach her to say affirmations: "What are you going to be when you grow up, Dorothy?"

    "I'm going to live to be a hundred."

    Pediatric oncologist H. Stacy Nicholson wanted to begin chemotherapy immediately. Mary knew that chemotherapy patients, racked with nausea, often suffered from wasting, leaving them susceptible to infection. To keep up Dorothy's strength, Mary brought in vitamin C Doctors said that as long as the doses weren't dangerous, Dorothy could take the vitamins.

    Mary also bought cans of a high-calorie, vitamin-rich protein drink and blended it with a chocolate-flavored instant-breakfast mix. Dorothy sipped the drink cautiously, and it stayed down. With each passing day, she sipped the milkshakes and gained a few ounces.

    In September the doctors told Jim and Mary they could take their daughter home. She would return to the hospital every three weeks for chemotherapy.

    Mary's research convinced her there were other ways to battle cancer-unconventional treatments that might work along with conventional medicine. Soon Mary had a long list of vitamins and supplements thought to be cancer fighters. Mary always consulted with the doctors. They didn't endorse what she did, but didn't stop it either ─ as long as Dorothy continued on conventional treatment.

    Devastating Effects. In November 1994 a brain scan showed that Dorothy's tumors were shrinking. Her weight remained steady, her cheeks pink. Indeed, doctors said Dorothy had endured chemotherapy unbelievably well. Still, radiation was scheduled of the following January.

    Mary began seeking out other parents of brain-tumor patients to gather more treatment information. One day in the waiting room. Mary noticed a little boy whose skull was bisected by a thick, pink scar similar to Dorothy's. The boy's mother explained that he'd already gone through radiation, and his cancer was in remission.

    But something had happened to her boy. He began to struggle in school and was in a learning-disabled class. Worse, he'd stopped expressing happiness, surprise and anger, as though his emotions had been erased.

    Mary looked at Dorothy. Could radiation do the same thing to her? Children under three do not usually receive radiation therapy at all since the effects on the developing brain can be so devastating. Doctors said Dorothy, at 31/2 , could lose as many as 20 points off her I.Q. at the time that she was just beginning to grasp fundamental concepts of language and numbers. Mary wondered whether Dorothy's personality could also be affected. What would be the final cost of trying to save Dorothy?

    Mary considered delaying radiation therapy. She knew it was a gamble, but Dorothy was responding well to chemotherapy and alternative treatments. If they had to resort to radiation in the future, Mary reasoned, Dorothy's brain might be better able to withstand the treatments.

    Jim feared that by denying radiation, Dorothy wouldn't survive at all. As he and Mary danced around the topic for weeks, the tension simmered. Then one evening he attended a meeting of cancer survivors and their families. A woman told him that her son, now 18, had been struck with cancer as a little boy, and his life had been saved by radiation.

    When Jim turned to meet her son, he saw a man about 31/2 feet tall. Suddenly, everything Mary had said became real. This could be Dorothy, Jim thought.

    A few days later Mary went to the hospital to plead with the doctors to delay radiation. Because Dorothy's tumors had responded so well to chemotherapy, the doctors agreed to postpone radiation for a year. They also put her on a cycle of less toxic chemotherapy designed for babies.

    For the next five months, Mary battled to offset the ravages of chemotherapy. Dorothy's weight remained steady, but the relentless cycles dulled her reflexes, claim her hair and eyelashes, and left her violently nauseated. Soon she suffered hearing loss in her left ear which would worsen if she continued with chemotherapy Her spirit was being battered along with her body. "We're losing her piece by piece," Mary told Jim.

    Mary and Jim met with Dr. Nicholson and explained why they wanted to take Dorothy off chemotherapy. "What if we save Dorothy's life," Jim said , "but lose who she is?"

    Nicholson said there was no question in his mind that chemotherapy and radiation were Dorothy's best hope. "I feel strongly about this," he said. "There are times we would even take parents to court to get permission for the treatment."

    He paused. "But Dorothy's case in not quite at that point," he continued. "You'll have to monitor her closely. If the tumor comes back we'll have to go directly to radiation."

    Mary let out her breath. "I'll rush her to the hospital if anything happens," Mary promised. "I'll bring her in for scans every three months."

    As Nicholson left the room, he couldn't help feeling that the Morans were taking a terrible risk.

    "It's My Heart." In the following weeks Dorothy filled out and her eyes grew bright again. Her personality was also re-emerging. One afternoon as she leaned back in a beach chair next to a swimming pool, she said with a grin, "Ah, this is the life." Jim and Mary enrolled her in tennis lessons and planned to visit Disney World. They wanted her to run, play and swim like other children.

    Then one day in early autumn 1995, Mary saw a telltale sign in Dorothy's gait: she wobbled.

    On October 3, 1995, five months after stopping Dorothy's chemotherapy, the Morans were back at the hospital, waiting for results of another brain scan. Nicholson approached and ushered them into an office.

    The scan, Nicholson said, had revealed a new tumor, this one in Dorothy's cerebrum. My God, Mary though, tears rolling down her cheeks, What have I done? She couldn't look at Jim. What if he blamed her? She focused on the doctor and braced herself for what he'd say next. "Mr. And Mrs. Moran," Nicholson said kindly, "we're in good shape. Dorothy is older,, and her brain has developed more. Radiation will affect her in a less destructive way."

    Mary glanced at Jim and saw no anger or recrimination in his face.

    For the next month and a half, Dorothy got radiation five days a week. Every day Mary prepared her special milkshakes. Every night she and Dorothy repeated affirmations: "How old are you going to live to be, Dorothy?"

    "I'm going to live to be a hundred, Mommy."

    Still, the Morans worried that radiation would change Dorothy's personality. Would the loving side of her nature be lost?
Then one day Dorothy's god-mother took her shopping. Seeing a jewelry display, Dorothy stood on her tiptoes and reached to touch a heart-shaped pin. "I want to get this for Daddy," she said. "I'll tell him it's my heart. That way he can always have my heart with him."

    On a summer afternoon six months after her final radiation treatment, Dorothy raced through an indoor play area, holding hands with her two best friends.. The little girls whizzed down slides and laughed as they tried to walk through a room filled with slippery plastic balls.

    That evening Jim and Mary stood beside Dorothy's bed for a long time, watching her sleep. It was July 18, 1996, Dorothy's fifth birthday.

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