The Facts of Life : Class Gives Patients Stability and Solace

The one-room school at Children’s Hospital of Orange County is always filled with students.

While some are barely old enough to count to 10, others are scribbling algebraic formulas on yellow tablets. They sit in the cramped room alongside their intravenous bottles, bedpans, wheelchairs and medical alert alarms.

Even when they feel too weak to get out of bed, the children, who desperately want to be “normal,” attend classes.

Doctors say the one-room school has become an essential part of life for the children whose lives are filled with needles, medicines and pain from their illnesses and treatments. Going to school, after all, is part of being “normal.”

“When the children are feeling sick, the one thing they want most is to feel good about themselves,” said Shirley Lewis, who has taught at the hospital for the past five years. “Learning your multiplications, a history fact or an important date can make a child feel happy. And that’s just as important as the medicine.”

Children’s Hospital started the school program five years ago after staff members noticed that their young patients were often bored and depressed, said Dr. Frank Carden, director of health psychology at the hospital.

“The kids were upset because they thought they would fall behind in their schoolwork,” Carden said. “It was common for the nurses and doctors to hear, ‘I’m going to be a failure when I get out of here.’ ”

The hospital collaborated with the Orange Unified School District’s special education department, which agreed to provide a teacher for the program. The teacher was Lewis, a native of Iowa, who had been a substitute at the district for 16 years.

While other children’s hospitals elsewhere in the country may have on-site tutors for their young patients, CHOC is unique in that Lewis tutors children in all grades, from kindergarten through 12th grade.

School is therapy for children routed out of their normal routine because of their illnesses, Carden said. Going to school, even if it means attending one within hospital walls, makes them feel they have some control, he said.

Students in the program suffer from a range of illnesses, some relatively minor, others terminal. Lewis treats all of the children the same. She scrambles from one desk to another, making sure each student has an assignment. When a student falters on a math problem, she gently corrects him. When another completes a list of word definitions, she cheers him on.

A regular school day begins at 7:30 a.m. with Lewis visiting each child’s hospital room and checking his or her condition report. Those who are too ill to attend class are given assignments to do in their room or they rest. By 10 a.m. Lewis is in the classroom with students, who range from high school seniors to preschoolers.

Students filter in and out of the classroom, depending on how well they feel. Sometimes, they look weighted down with the medical equipment they have to carry. The children with cancer bring along their pans in case they vomit from their chemotherapy treatments. The children with cardiovascular problems have their heart alarm alerts strapped to their chests.

Throughout the day, nurses and doctors dart in and out, checking pulses and handing out medicine. And parents anxiously peer into the classroom to check on their children. Sometimes they help with the schoolwork, along with several hospital volunteers.

Karen Keuthan watched her 5-year-old daughter, Holly, learn math. Holly, who has a bone tumor in her leg, is receiving chemotherapy treatment. Because of the treatment, she is missing regular kindergarten classes.

“Going to school here is giving her security because it is somewhat similar to home,” Keuthan said. “She feels well enough to come to class. And she has enough motivation to keep learning.”

When students complain that they are not feeling well, Lewis helps them out of their chairs and back to their rooms while the others quietly continue their schoolwork. Later in the day, Lewis visits them and reads their favorite books to them.

On a recent morning, holiday decorations adorned the classroom and a full bookcase filled a corner. One preschooler, dressed in pajamas and Minnie Mouse slippers, colored in geometric shapes while a boy learned about the Oregon Trail on a personal computer.

“After I finish this, do I have to wait on line to play Nintendo, Mrs. Lewis?” one youngster asked.

“Yes, but you won’t have any homework,” Lewis replied.

In a corner of the room, Jose Luis Felix, 10, teased his buddy Eddie Arrioja, 12, when he let out a cough. The two boys have cystic fibrosis, a hereditary disease that causes mucus to clog up their lungs. Jose Luis, who stays at Children’s Hospital at least three times a year, said he likes attending school there because the other children understand him. When he attends his regular school, the students there make fun of him.

“Every time I cough, they call me ‘tomato face,’ ” Jose Luis said. “Sometimes, they call me ‘skinny bones’ and ask me when I’m going to die.”

Eddie said some of the kids at his school in Orange have refused to touch him because they know he has been ill.

“They think, ‘Should I play with him or not?’ ” Eddie said. “Well, it’s not my fault that I’m sick.”

Children with terminal illnesses are not uncommon at the hospital’s school. Eddie’s younger sister died of cystic fibrosis when she was 7. Another boy had two sisters who died of the disease. The news is harsh to Eddie and his companions. But bad news is not hidden from them.

“There’s only one thing that makes me different from the other kids and it’s that I might be dying,” Eddie said. “That’s the only thing different and also I cough a lot.”

Though the majority of the children regain their health, there have been several students who have died. Lewis said that is the worst part of her job. She admitted she has been asked by acquaintances why she bothers to teach those who are terminally ill. She said she bristles with anger at such questions.

“We all want to learn as much as possible, even if the child knows he is going to die,” she said. “My job is to help them feel as smart and as good about themselves as possible.”

She remembers an 8-year-old boy with terminal cancer who wanted to read “The Strange Case of Dr. Jekyll and Mr. Hyde.” Since he was too weak to finish the book, he asked Lewis to read it to him. He didn’t want to hear the children’s version. He wanted the original 1886 classic by Robert Louis Stevenson.

“He wanted so bad to hear the story from beginning to end,” Lewis said. “Sometimes, when I was reading to him it seemed like he was sleeping or couldn’t understand what the book was saying, so I would stop. And sure enough, he would open his eyes and ask me why I was stopping.

“Shortly after we finished the book, he died. But he had read that book, and I know he was happy.”