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When Paige Malone giggles, her whole body giggles. Her cheeks bounce, and laughter tap-dances off her tongue. Even the ringlets atop her head groove to her good time.
The 7-year-old is a natural performer. She initially feigns shyness until she extracts the right amount of coaxing from her mother. When she can no longer ignore the urge to dance, Paige wiggles her two-foot frame to whatever radio song pops into her head and curtsies when her audience breaks into cheerful applause.
Tamara Malone is happy coaxing her daughter to dance. Two years ago Paige was so weak from leukemia treatments that Tamara pleaded with Paige to hang onto life. The mother of three, Tamara can hardly measure the amount of stress she’s been under for the past two years watching her middle child endure radiation, chemotherapy and two bone marrow transplants.
“It was a lot to take,” Tamara says. “You just pray that you’ll make it through.”
Psychologists at St. Jude Children’s Research Hospital are studying parents like Tamara to predict those who are at high risk for increased distress when their children undergo stem cell or bone marrow transplants. Caregivers can help these mothers and fathers find ways to cope with stress, making recovery a smoother process for young patients.
Tamara Malone remembers everything about the day her world turned upside down. To say she was stressed is an understatement. On June 5, 2003, Tamara took Paige to the doctor after noticing bruises on her arms and head. A blood test revealed that Paige had acute lymphoblastic leukemia (ALL), the most common childhood cancer. She was referred immediately to St. Jude.
“I was so nervous,” Tamara recalls. “I was thinking the whole way from the pediatrician’s office to the hospital, ‘Oh my God, what is happening?’ My whole family was already at St. Jude waiting for us when we arrived.”
Nineteen days of chemotherapy failed to rid Paige’s body of leukemia cells. Doctors told Tamara her daughter would need a bone marrow transplant, a procedure to replace the tissue that produces blood cells.
“I panicked at first because I thought this was going to be some kind of major surgery,” Tamara says. “I had so many questions running through my head. What if we don’t find a donor? How much can her body take? But I calmed down after talking to the nurses. I realized that St. Jude has been really successful in treating ALL. And it turned out that her father could be the bone marrow donor.”
Although the side effects and experiences during stem cell and bone marrow transplants vary from child to child, patients typically stay in or near the hospital for 100 days and are monitored closely for signs of negative reactions, such as graft-vs.-host disease and infections.
Paige made it through the transplant with flying colors, avoiding complications or infections. However, eight months later, Paige turned pale and lethargic. She had relapsed.
“I was at a standstill,” Tamara says. “I couldn’t believe it. It’s like we were on a yo-yo going back and forth.” This is when her stress level hit the roof. “Being the mother of three girls is stressful under normal circumstances because they have school, Girl Scouts and other activities,” she says. “Cancer doesn’t happen in a bubble; life goes on around you. We still had bills to pay, chores to do and a family to run.” Paige’s father juggled work and the other daughters, while Tamara spent nights with Paige in the hospital getting ready for her second bone marrow transplant.
Again, Paige endured the procedure like a champion, Tamara says. “She’ll be one year out of transplant in August, and she’s doing great.”
The same can be said for Tamara. She learned how to cope with stress after taking part in a St. Jude study that tracked parents of children undergoing bone marrow and stem cell transplants. Tamara was part of a group that received interventions like massages, CDs with relaxing ocean sounds and advice for coping with stress.
“As the mother, you always put yourself last,” Tamara says. “But at St. Jude I learned that by taking some time out for myself, I could help Paige even more because she wouldn’t see me stressed out all the time.”
Stressed parents can lead to stressed kids, according to clinical psychologist Sean Phipps, PhD, of St. Jude Behavioral Medicine.
“The research suggests that if you have highly stressed parents, this is very likely to impact the coping and adjustment of the child,” he says. “So understanding what parents are going through, and on some level intervening with parents to reduce their stress, might in some cases actually be more practical than intervening with the child.”
Phipps has led a five-year study funded by the National Cancer Institute to study stress in families of patients undergoing bone marrow and stem cell transplants. Transplant patients were chosen mainly because the procedure is a predictable source of stress as opposed to events like hurricanes, tornadoes and car accidents.
“With transplants, you generally know when it’s going to happen, and we can study people before and after it happens,” Phipps says. “Also, we know that this is a group at our hospital that experiences some of the most intense, acute, prolonged stress and is likely to be in more need of help.”
The researchers studied 151 parents and guardians by using psychological tests that measure parental stress and moods; child behavior problems; coping; and other factors that, together, identified parents at higher risk for distress. The findings showed that parents were especially likely to suffer significant distress if both they and their children had previous difficulties coping with illness-related stress and if the children had problems cooperating with their parents.
Parents of sicker children appeared to be more likely to suffer greater distress than parents of children who were not as ill. In addition, parents without strong family support networks suffered more distress, as did those parents who were less expressive and tended to cope with difficult situations by avoiding them.
“You have some parents who naturally take an active approach to dealing with stress—they get on the Internet to read about the disease and treatment; they join support groups; they talk to other parents,” Phipps says. “Other parents want to put it out of their minds; they say they will leave it in the doctors’ hands. It’s not to say that avoidance is always bad, but folks who do this generally have the greatest distress.”
Phipps’ team concluded that the most effective way to assess parents at higher risk for increased distress is to focus on past illnesses and treatment-related issues of the children rather than on broader aspects of parental and child behavior.
“You can do lots of fancy personality tests, but we found that really the germane predictor was simply to ask parents specifically how they have coped with their child’s illness in the past,” Phipps says. Based on the answer, caregivers can determine measures that should be taken to help parents reduce transplant-related stress.
Phipps and his colleagues found that eventually most of the acute distress associated with transplants resolves in both parents and patients. The researchers are now interested in finding any long-term effects.
“For example, one of the hot topics these days is post-traumatic stress disorder,” Phipps explains. “We want to know if there is an element of the stress that will rear its ugly head later on. If so, maybe we can help parents make adjustments now for down the road.”
While Tamara concedes that stress will probably always be a part of her life, she says she now knows how to deal with it. “I know that as a parent, sometimes the best thing you can do for your child is to take care of yourself,” she says. “I’ve learned a lot from Paige. Never seeing her get down has been an inspiration to me.”
What little Paige remembers of the transplants is that it was a happy time when she got to color pictures for her hospital room and play with other kids. She’s too busy planning her future to dwell on the past.
“When I grow up I want to be a lawyer, an artist, a psychiatrist, a doctor—to help the kids of St. Jude—a cheerleader, a teacher, a judge, a tutor and a singer,” she says before pausing for a moment and tapping her index finger to her chin. “Oh yeah, and I want to dance.”
Reprinted from summer 2005 Promise magazine.
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