Program Helps Children with Cancer Readjust to School Life

from School Health Reporter, Winter 2005

When Children’s Hospital nurse Jan Davis goes to elementary schools to talk to kids about a classmate who has cancer, the comments never cease to amuse her.

“A kid will raise his or her hand and say, ‘I went to the doctor!’ or ‘I have cancer in my fingernail!’” she said.

But it’s Davis ’ job – and the job of other Children’s oncology nurses and clinical social workers – to clear up those misconceptions. On top of their regular duties at Children’s, four social workers and the eight nurses in the oncology clinic visit schools within a 60-mile radius of the hospital four to five times a year to talk to the peers of a student who has been diagnosed with cancer.

Children’s school re-entry program helps children understand the challenges a child with cancer faces when returning to school, including hair loss, weight gain and feelings of isolation, said Amy Pickett, LCSW at Children’s.

Usually the parent of a child with cancer, concerned that the child will have trouble fitting in once he or she returns to school or about the risk of infection from other children who are ill, asks the team to visit the child’s school.

It’s ideal for social workers and nurses to visit a particular child’s classroom because they know the child, the family and the specifics of his or her disease, said Karen Tilley, LCSW, clinical social work manager at Children’s.

The team most often visits first- through sixth-grade classrooms in the metro area and sometimes a bit farther out, such as in Erie or Ward, Davis said. It’s harder to visit middle schools and high schools, Davis said, because students change classes often, and classes are so large that it’s difficult to address students all at once. Usually the team speaks directly with an older child’s teachers, counselors or a small group of friends.

“Our input can help schools formulate an education plan to help the child get his or her needs met,” Tilley said.  “We discuss things like when to call the parents, how to accommodate special needs or a lack of energy.”

But younger kids need more help understanding cancer, Pickett said.

A nurse or a social worker or sometimes both visit the classroom and talk to kids about cancer at an age-appropriate level, Pickett said. Sometimes the child with cancer answers questions as well.

“We tell them about happy cells and sick cells,” said Davis, who has been a nurse at Children’s for 25 years. “We tell them that we are giving the child medicine to make the sick cells go away.”

Kids often want to know how the classmate got cancer, Pickett said.

“Children sometimes think cancer is contagious,” she said.

Also, Davis said, children often associate cancer with someone old who has died.

“They want to know if that is going to happen to their friend,” she said.

The team talks to kids about hair loss and mediports, a type of permanent IV to administer medication.

“We’ll tell them the child can’t play football and that they shouldn’t roughhouse with them,” Davis said.

They also discuss how it feels to be sick.

“They ask the kids ‘If you were sick, what would you like your friends to do?’” Tilley said.

In addition, they hand out educational materials and often show the video “Why Charlie Brown Why?” a cartoon about Charlie Brown’s pal Janice, who is diagnosed with leukemia.

But the most important part of the visit, Pickett said, is telling the kids how they can help.

“We tell them about good hand-washing,” she said, because a child who has been undergoing chemo is more susceptible to diseases because his or her immune system is down. “We tell them that they need to be a friend, be supportive. The little kids get excited about sending cards and letters to a child in the hospital.”

Pickett and Davis have found that the visits benefit everyone involved.

“The children with cancer are always thankful and appreciative, and feel more accepted in class,” Pickett said.  “And the class is more understanding as to why the child will be absent more.”

“It’s empowering to kids,” Tilley said. “The student feels supported, parents feel like the school has a better understanding of what the child’s going through, and the school feels more comfortable having the child in the classroom.”

Sometimes, Pickett said, teachers even have students draw pictures of the visit.

“Sometimes the things we’ve said are on the pictures,” she said. “It’s cool to see the effect you have.”

Talking Points for School Health Nurses, Teachers

Children who have been away from school during treatment for cancer may feel uncomfortable explaining their absence or worry about being behind classmates. Other students may not know how to treat a returning student or what they should or shouldn’t say.

Here are some talking points for teachers and school health nurses from the Leukemia & Lymphoma Society’s “Trish Greene Back to School Program for the Child with Cancer:”

What is cancer?

Cancer is a process in which cells grow and reproduce in an abnormal, uncontrolled manner. Children tend to get different kinds of cancer than adults. Children are more likely to get cancers of developing organ systems, like the blood, nervous system and bones.

How does cancer impact the child?

Young children are focused on pain and discomfort, along with the anxiety of being separated from parents and familiar surroundings during hospitalization. Older children are better able to comprehend the serious nature of their disease and may feel isolated and alone if they are unable to participate in their usual activities, such as school.  For teens, the fear of dying may be very strong. The physical changes in appearance brought on by the illness and treatment can be extremely distressing to teens struggling to fit in.

How does cancer affect peers and classmates?

The acceptance and support of classmates and the school community is critical to a child’s successful school reintegration. Kids who are undergoing cancer treatment may look and feel differently than their peers. They may feel self-conscious. Having a seriously ill child in their class may be frightening. Classmates appreciate suggestions on ways they can help, like being supportive and sharing homework assignments during an absence, or inviting the child to play with them during recess.

Reactions of teachers and staff

Teachers may wonder if a child with cancer is capable of being in school, or may inadvertently treat the child as if he or she was “fragile,” adding to the child’s sense of being different. Beginning at the time the child is diagnosed, it’s important to establish open lines of communication between the school, the child, his or her parents and the health-care team. As a teacher, your support and encouragement will reinforce the child’s ability and desire to continue participating in school.

A child with cancer can struggle with fatigue due to their treatment, their energy level may fluctuate and will dictate how much they can do.

What are the misconceptions peers have about children with cancer?

• 5- to 8-year-olds: A child or his or her peers may believe the patient did something “bad” that caused the illness or they may believe they can catch the disease.
• 9- to 12-year-olds: Teachers should differentiate cancer, which is not contagious, from AIDS, a virus that infects the cell, which is contagious. Teachers also should ask classmates how they would feel if they were in a similar situation.
• 13- to 17-year-olds: Sometimes children this age who have cancer do not want to disclose personal situations to all students.  Children at this age should be urged to have at least one “safe person” – teacher, counselor or nurse – who is aware of the child’s medical condition and can offer advice and support.  Classmates can assist by treating the ill teen the same as they did prior to the illness.

For more information or for handouts, videos or coloring books for your students, contact the Leukemia & Lymphoma Society at www.tlls.org.