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A battle for a little girl's life
By ALEX LEARY © St. Petersburg Times, published May 21, 2001 Phyllis Dixon did not expect to return home from Virginia this early. She figured Chuck would be giving their daughter Jacqueline a bath and hoped to surprise them. But as she drove into their Homosassa neighborhood about 8 p.m., the house was dark. Alarmed, she walked into the kitchen and saw the note, scribbled on the back of a piece of junk mail. * * * Phyllis: I am at Shands hospital in Gainesville. I had to take Tweety for a blood test and Dr. Fialko admitted her due to a high white count or something. I will try to get word to you . . . Love, Chuck. * * * The first thought that came to her mind: leukemia. There had been trouble in recent weeks but nothing that would suggest Chuck and Phyllis Dixon's first child, then only 20 months old, had cancer. Looking back now, more than six years later, it all makes sense. Jacqueline was taken to the emergency room one night after a series of runny noses and fevers. A doctor said it was an ear infection and put her on antibiotics. The following weekend, the Dixons took their daughter to the circus in Inverness. As they were leaving, Jacqueline saw a familiar face and ran ahead, limping. Her parents would later think she either twisted an ankle or her shoes were too tight. They noticed bruises on her shins but thought they were from falling down, as all toddlers do when learning to walk. Her fever had cleared, so there was little cause for alarm. "I went on the business trip thinking everything was on the upswing," said Dixon, a superintendent at Florida Power in Crystal River. Another sign of trouble came a few days later. The nanny called and said Jacqueline was unusually lethargic and had trouble walking. This time, the doctor thought she might have a hip infection and ordered blood tests. Chuck Dixon took his daughter to Taco Bell before heading home. She lay on the living room floor watching Barney when the doctor called with the test results. "He asked me if I knew where Shands was and I told him I didn't know exactly but I knew where the university was," Chuck Dixon recalled. "He said to get her there as soon as you can but not to speed." 'Just a piece of the puzzle'More than six years have passed, but Oct. 20, 1994, remains a vivid memory for Chuck and Phyllis Dixon. It was the start of a three-year test of their physical and emotional endurance, and their marriage. The coming months would show them how capricious life can be, no matter how careful one plans. The experience would give them an intimate view of cancer, a killer that more often strikes those who have led a full life, not a child. "What something like this does is it shows you that you're not in control and that you're not the center of the world," Chuck Dixon said. "And that no matter how much you would like to be, you are just a piece of the puzzle." But this story, unlike thousands of others in Florida each year, has an uplifting conclusion. Jacqueline's leukemia has been in remission for more than six years. "They say if you make it for five years then they consider you essentially cured," Phyllis Dixon said. Forty years ago, Jacqueline might not have survived at all. In 1960, the survival rate was 14 percent; today, the overall survival rate for all leukemia is 44 percent, according to the Leukemia and Lymphoma Society. The five-year survival rate for children with acute lymphocytic leukemia is 81 percent. ALL, as the disease is known, spreads rapidly and is characterized by the uncontrolled growth of immature, functionless cells in the marrow, the spongy material that fills the long bones in the body and produces blood cells. These abnormal cells crowd out healthy red and white blood cells and platelets. Without enough normal white blood cells, Jacqueline's body had little defense against infection. The lack of healthy red blood cells made her tired. She bruised easily because of a platelet deficit. Anguish over the unknownAn exact cause for leukemia is unknown, but it is thought that children with chromosomal abnormalities, such as Down's syndrome, are at a greater risk. Prolonged exposure to ionizing radiation and toxic chemicals also might contribute. The Dixons anguished over a cause, going as far as having Jacqueline's chromosomes mapped to show a possible defect. Nothing. Could radiation from the power plant have played a role? The Dixons asked that question, too. But even before she became pregnant, Phyllis Dixon asked to be reassigned to areas where there was no chance for exposure. Whatever the cause, "she was a high risk case because of her age," Chuck Dixon, 38, said from the county offices in Lecanto, where he works as director of community development. Jacqueline, who is finishing second grade at Lecanto Primary School, often meets her father at the office on Fridays. "If her white blood cell count is high . . .," Dixon started to explain before his daughter cut him short. "And, Dad, what does that exactly mean in English?" Jacqueline said, sounding more like 18 than 8. "It means . . . " "I had a good chance of dying." Jacqueline peeled back her shirt to show a scar from incisions made to insert a small metal chamber in the right side of her chest. Chemotherapy drugs are injected with a needle that pokes through the skin and into a rubber top of the device, called a port-a-cath. After nearly three years inside her body, the port now sits in a small plastic cup. In kindergarten, Jacqueline brought it in for show and tell. Treatment for leukemia is a prolonged and painful process. Jacqueline spent 26 days at Shands, her parents at her side the entire time. Family pictures show a little girl who was at times happy but mostly sad and sick. In one of them, Jacqueline is holding her stuffed manatee, Opie. The toy, which Jacqueline won for crawling the fastest during a "diaper derby," is covered with adhesive bandages taken from Jacqueline's chest. The second phase of treatment, which lasted six months, was slightly less intensive. Jacqueline went back to Homosassa but every few weeks she was admitted to the hospital for three or four days. During one of these early days home Phyllis Dixon was giving her daughter a bath when clumps of hair started falling out. "I just sat by the bathtub and cried," she said. "It was almost symbolic. I thought if her hair didn't come out she would do really well. But when it did, it was a realization that once again she wasn't unique and would be just as susceptible to the bad side effects as the other children." The emotional pain and constant attention paid to their daughter put a strain on Chuck and Phyllis' relationship. They had little time for each other, and both have demanding jobs. "Cancer does one of two things: It either pulls people together or tears them apart," Chuck Dixon said. His wife added, "For a while, we found it difficult to talk about anything but leukemia. We didn't talk about how we were feeling." The constant state of worry is perhaps no better illustrated than the business card Chuck still keeps in his wallet. On the back, in small handwriting, are emergency phone numbers for Jacqueline's doctors. Chuck put tape over the card so the numbers would not rub off. Because her immune system was suppressed, Jacqueline often had to wear a surgical mask when outside. She had limited contact with other kids. For her second birthday -- Feb. 21, 1995 -- friends watched from outside the front door as Jacqueline opened gifts. The third and final treatment phase lasted 21/2 years. A nurse visited Jacqueline once a week and took a blood sample to determine the chemotherapy dosage. Getting Jacqueline to sit still for the shot was difficult; many times she had to be restrained. "As soon as you were done she'd be back up and playing," said the nurse, Cherity Juergensmeyer of Inverness. A normal young girlJacqueline still displays that exuberance. She is by all accounts a normal girl. She likes the Backstreet Boys and Aaron Carter, the young pop star. She begs her parents for clothes by Mary-Kate and Ashley, the Olsen twins. Her father is proud to point out that she is one of the tallest in her class and is in the accelerated reading program. "I can spell the word amphibian," she said. "A-m-p-h-i-b-i-a-n." As she grows older, Jacqueline will face a whole new set of pressures: school, relationships, work. For now she seems like any little girl, embarrassed when her parents bring up the past -- like all the cheeseballs she ate in the hospital -- and proud to be a big sister to 3-year-old Caroline. It may be years before Jacqueline fully understands leukemia, but her parents have come to peace with the disease. "It restored our perspective on what is important," Chuck Dixon said. "I feel like Jacqueline has a very special purpose. If my main job is just to make sure that she is happy and healthy and taken care of, then that's plenty for me." * * * Special report: The impact of cancer A dreaded diagnosis (May 20, 2001) Cancer takes its toll on body, spirit, family (May 20, 2001) Minister soothes souls in final days (May 20, 2001) Upbeat, exuberant survivors rally to raise money and spirits (May 20, 2001) A teacher's final lessons for life (May 20, 2001)
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