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Personal Health : A Day at a Time : For Teens With Cancer, Innovative Groups and Peer Support Offer a Real Boost

October 09, 1990|ELIZABETH VENANT | TIMES STAFF WRITER

For most youths, the teen-age years are a time of struggle with a budding sense of independence, the first twinges of nascent romance and such early power tussles as competition over use of the family car.

For 18-year-old Laura Jetton, however, adolescence was spent coming to terms with significantly greater developmental issues. When she was 12, Jetton was found to have cancer; a tumor appeared on her left scapula and she underwent a year of chemotherapy.

Then, in the second semester of ninth grade, more tumors; this time Jetton received chemotherapy and a bone marrow transplant, and the disease went into remission. In 11th grade, the cancer reappeared, as a small tumor on her right lung, and was removed. Finally, last November, in her senior year at a Northridge high school, she found tumors on her thigh, her rib cage and the right side of her skull. Under chemotherapy, all the tumors have disappeared.

But Jetton was back at Childrens Hospital in Los Angeles last month for a five-day stint. Her most recent chemotherapy treatment, administered the week before, had reduced her resistance to infection, and a cold and fever had set in.

"Your whole life is altered," says Jetton, wearing a Hard Rock Cafe T-shirt and a navy-blue cap and sipping a soft drink, of her years in and out of hospitals and the repeated interruptions in school attendance. "The way you live is different from (that of) most kids your age."

For people of any age, cancer is considered by the medical community to be a psychologically devastating disease. Morton Bard, professor emeritus of psychology at City University of New York and vice president of service and rehabilitation for the American Cancer Society, has compared the fear it conjures to that created by violent crime. (He does so in his work, "The Crime Victim's Book," co-written with Dawn Sangrey.)

"It creates a special psychological circumstance," Bard says. "It is of unknown origin, it's a mystery, it gives rise to all kinds of attributions. People can blame themselves or someone else. They try to look for a cause because the cause is unknown. There are very few diseases like that."

Often viewed as death-dealing and mysterious by adults, cancer is particularly difficult to accept in adolescence, psychologists and oncologists affirm. "The major job of adolescence is to establish one's self-identity, self-esteem and independence," says Dr. Stuart Siegel, head of the hemotology/oncology department at Childrens Hospital. "Here you have someone trying to do that, and at the same time they're hit with this devastating, life-threatening disease."

To help youths with cancer through their developing years, the hospital has established Teenline, a program that combines educational meetings and social activities to provide participants with a congenial, supportive environment.

The hospital also operates a program that eases the social reintegration of young children into school and a Careline program that pairs the parents of new patients with experienced couples. Other services provide toys to children after painful procedures and medical literature to their families. These programs are partly funded by the Los Angeles Ronald McDonald House, one of 110 residences near hospitals worldwide where parents of cancer patients can stay for $5 a night.

The Childrens Hospital package is considered one of the most comprehensive, as well as one of the most innovative, in the country. "It's a state-of-the-art program," says William Redd, pediatric psychologist at Memorial Sloan-Kettering Cancer Center in New York, pointing to the hospital's early work in addressing the psychological difficulties of cancer patients.

The hospital's decision to explore the needs of young cancer patients followed studies that showed a steadily increasing survival rate for children. While only 28% of patients under age 15 survived between 1960 and 1963, the percentage of survivors was up to 67% between 1981-86.

"The majority of children are going to survive their disease," says Ernest Katz, who pioneered the Childrens Hospital psychosocial programs in 1976 and now serves as director of psychosocial and behavioral sciences at Jonathon Jacques Children's Cancer Center at Long Beach Memorial Medical Center.

"That has radically shifted our thinking from helping children deal with dying to helping children live," Katz says.

"The goal of cancer treatment today is not only to wipe out the cancer at all costs, it really is to maximize the child's quality of life."

For a teen-ager, the quality of life depends largely on being part of the crowd. "No kid wants to be different and cancer makes you different in a big way," says Katz.

Cancer patients often suffer baldness, weight gain or loss, and amputation of limbs. They must give up sports, may lose some of their friends, and must learn to live with the uncertainty of their existence and the stigma of their disease.

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