Profiles in Courage : Counselor Smooths Way for Children Going From Hospital to Schoolroom

The frail 3-year-old perched on his father’s knee as counselor Lori Kaplan explained to a dozen parents that Adam was in remission from a lymph-gland cancer called Hodgkin’s disease.

“It’s not communicable. It’s not contagious,” Kaplan explained to the group, whose children attend the same day-care center. And now that Adam was able to return to day care with other toddlers, “this is a real important time for acceptance and caring.”

Added the boy’s mother, Cheryl Dozier: “My biggest worry was that people would not understand this disease, that the kids here will think he has cooties.”

But as Kaplan and Adam’s parents talked--describing Adam’s treatments and, briefly, lifting his shirt to reveal the catheter implanted in his chest for chemotherapy--the informational meeting turned into a support group. One woman confessed that she had once had Hodgkin’s disease. Another mentioned that her ex-husband was dying from the illness.

In all, Ultra Child Care Center director Marlys Garrett said later: “This put a lot of minds at ease. And it helped build a bond” between the Doziers and other families.

Score another victory for Kaplan, a counselor at Children’s Hospital of Orange County, who is charged with helping children with chronic illness make the transition from hospital back to school.

On the job since March, Kaplan meets with sick children, their parents, teachers--and sometimes all of their classmates--to explain their illness, help arrange special education if needed, and generally help them rebuild normal lives.

“I represent the child, trying to be a liaison with the hospital and the school,” explained 32-year-old Kaplan, whose last job was similar, working at a Canoga Park foundation to help severely burned children return to school.

Eventually she will be working with all of CHOC’s chronically ill children--whether they have diabetes or a brain tumor. But since she just started this job, she is following about a dozen cancer patients, ages 3 to 16, some recently diagnosed with cancer, some out of school for months.

The effort to help children with cancer return to school is a “relatively new problem,” said Joanne Schellenback, New York spokeswoman for the American Cancer Society. “But this is a happy problem,” Schellenback added. “Kids 20 years ago didn’t come back to school.”

Twenty years ago, most children with cancer died. But since the mid-’70s, children have been surviving leukemia, brain tumors and other childhood cancers once thought to be incurable.

Because of the increasing recovery rate, psychologist Ernest R. Katz started the first formal school re-integration program at Children’s Hospital of Los Angeles in 1975. Similar programs followed at UCLA Medical Center, Long Beach Memorial Hospital and now at CHOC.

Other re-integration programs have sprung up around the country. Children’s Hospital of Philadelphia holds a forum once a year where nurses show teachers what child cancer treatments consist of. And four Minneapolis-St. Paul hospitals have produced a 15-minute video depicting a girl with leukemia to help teen-agers understand the problems.

Still, the program Katz developed is considered one of the best ways of helping children with cancer live normal lives, cancer experts say.

Katz had noticed that children with cancer were often isolated, missing months of school while they were tutored at home. Meanwhile, young cancer patients who returned to class were often teased because they were bald after chemotherapy, or their skin looked sunburned from radiation. “Kids are very up front about their questions,” Katz said. “They say: ‘Oooh, why do you have that? You’re weird.’ ”

With funding from the National Cancer Institute, Katz designed a program in which a counselor meets a child at the onset of his illness and later accompanies a child to class to explain his diagnosis to teachers and his classmates. Children often want to know, “ ‘Is this contagious?’ ” Katz said. “And then everybody wants to know: ‘Is the child going to die?’ People worry, ‘Oh my God, what if the D question comes up in front of the child?’ But the kids have usually heard the word.”

At Children’s Hospital of Orange County, Kaplan is enthusiastically following the guidelines of Katz’ program: talking to children, trying to encourage them to return to school.

And when they do, she visits their classrooms to describe to students the child’s illness and the sometimes-disfiguring treatments he or she must have. Much of her talk is devoted to encouraging classmates to help the child, not tease him.

“The key thing is empathy,” Kaplan said. “What would you feel like if this happened to you?”

The program Kaplan is building at CHOC is long overdue, say doctors, psychologists and some parents of chronically ill children.

Up to now, at least half of these children were being tutored at home, and some could speak no English, CHOC psychologists said. Many have been out of school for months, Kaplan said, because “sometimes parents just don’t want to push them. They say, ‘Oh, he’s got cancer.’ ”

But sheltering cancer patients can hurt them, not help them, said Frank Carden, CHOC director of health psychology. “If they’re going to be long-term survivors, they have to be prepared socially to be in an economic environment, but many didn’t have the intellectual skills, the assertiveness skills.” Sometimes, CHOC psychologists said, parents have been fearful of their child going to school--fearful of being apart from a child who might be dying and fearful that he would contract a serious infection. CHOC officials say that, with the exception of exposure to chickenpox, the chance of catching a dangerous infection is minimal. Chickenpox, usually a mild childhood disease, can be a serious disease for children being treated for cancer because their immune systems have been suppressed.

And parents of children with cancer who wanted their children back in school sometimes had another problem--the teacher. Often, “there was real resistence from classroom teachers. Either the kids weren’t up to speed or they worried that the kid was bald. . . . Or they just didn’t want the kid in the classroom, dying,” said Karen Rhyne, program coordinator for the Kids Cancer Connection, a nonprofit Irvine parents’ group that gave CHOC $36,000 last year to hire Kaplan.

Much of her work, Kaplan said, is trying to clear up misconceptions. She tells children that you can no more get cancer from a child with cancer than you can get a broken leg from standing near someone who has his leg in a cast.

On Monday, Kaplan tried to help a Santa Ana boy with a “re-integration program” designed just for him.

In grammar school, teasing comes with the territory, but third-grader Tony Dike had had more than his share.

Over the last two years, as the shy, dark-eyed boy has battled leukemia and struggled to stay in school, he’s suffered mood swings from the chemotherapy, his father, Lawrence Dike, said. Last year, all his thick, black hair fell out. Though it has grown back, he has another problem: the steroids he must take have made his face round and body pudgy so that at age 8, Tony weighs 130 pounds.

Some of these physical changes led to taunts on the playground--”fat!” and “baldy-locks.”

But Monday morning, Kaplan came to his classroom at Heritage Elementary School to give Tony a hand.

She stood at the front of the brightly decorated room, with its handcrafted snowflakes and an “Earth sciences” area showing an erupting volcano, and asked 30 children what it would be like to be in Tony’s shoes.

“Have any of you ever been in a hospital before?” she wondered. “Do any of you know what leukemia is?”

For nearly an hour, Kaplan, Tony’s father and, briefly, Tony, explained his illness, the medicine that makes him overweight, the “scary” and frequent bone-marrow punctures that help doctors learn if his cancer cells are receding, and their constant fear--will the cancer come back? Could Tony die?

But Kaplan also talked about what Tony liked. “If Tony liked swimming before he got leukemia, would he like swimming now?” she said. There was silence. Then a boy dressed in a Boy Scout uniform raised a hand. “Yes, he would still like swimming,” he said.

“Of course,” Kaplan said. “He still loves to swim. How many of you like to swim?” As two dozen hands went up, Kaplan added, “Maybe you could do it together some time.”

When her briefing ended and the children lined up for lunch, school Principal Dwayne Leech said Kaplan’s talk was helpful. “I think any time we bring things out in the open, it can do some good,” Leech said.

Tony was impressed. After Kaplan’s talk, he was surrounded by friends as he waited in line on the asphalt playground for lunch. Asked if he liked Kaplan’s program, he smiled and said softly, “Yeah.”

But if Tony did not have a lot to say, his friend, Paul LeCompte, had some thoughts. What he learned from Kaplan’s talk, Paul said, was: “It’s not Tony’s fault that he got cancer.” Some people, mostly from other classes, had teased Tony, Paul said, but now he and his classmates would try to do what they could to make the teasing stop.