Childhood Cancer

Parents may not even think about school during the early efforts to save their child’s life, but a quick return to school helps children regain a sense of normalcy and provides a lifeline of hope for the future.

Kids are fantastic with Alissa (age 8) who has had multiple surgeries for spinal astrocytoma. They can also be brutally honest. The best therapy for Alissa is being around her friends. School offered us home teaching when Alissa was diagnosed, but we said no. Alissa looks forward to school; it helps her. The people and the teachers rally around her. Alissa would be able to have a major back operation on a Friday, and she would be back to school by Tuesday. The most important thing is to get them back into real life as soon as possible.

Preparation is the key to a successful return to school. You and hospital staff (e.g., hospital school liaison, social worker, child life specialist) may want to prepare a package for the school staff that contains the following information:

  • A doctor’s statement that addresses your child’s health status; ability to safely return to the school environment; physical restrictions, including any limits to physical education or recess; and probable attendance disruptions.
  • Whether your child will attend full or half days.
  • A description of any changes in her physical appearance, such as weight gain or hair loss, and suggestions about how to help the other children handle it appropriately.
  • A request that the school administration is willing to bend the rules about head coverings so your bald child can wear a wig, hat, or scarf to school.
  • The possible effects of medications on academic performance and any medications or other health services that will need to be given at school (see section later in this chapter called “Individual health care plan”).
  • A list of signs and symptoms requiring parent notification (e.g., fever, nausea, vomiting, pain, swelling, bruising, or nosebleeds) and, if parents are divorced or separated, what notification procedures should be followed.
  • Concerns about exposure to communicable diseases, if necessary.
  • Any special accommodations, such as extra snacks, rest periods, extra time to get from class to class, use of the nearest restroom (even if it is the staff restroom), and the need to leave for the restroom without permission. This list should also include any requests for academic accommodations such as extended time for tests and reduced workload. These services are discussed in greater detail later in this chapter.

The following are parent suggestions about how to prevent problems through preparation and communication:

  • Keep the school informed and involved from the beginning to foster a spirit that “we’re all in this together.”
  • Explain to classmates what is happening and reassure them that cancer is not contagious.

Elizabeth was in preschool at the time of her diagnosis. The manager did a wonderful job of integrating her back into the fold. All of the other children at the school were taught what was happening to Elizabeth and what would be happening (such as hair loss). They learned that they had to be gentle with her when playing. The manager was a former home health nurse, so I was very confident that she would be able to take care of my daughter in the event of an emergency. She was already familiar with central lines and side effects from chemotherapy. She was a gem!

  • Arrange for places that your child can rest if she is too tired to participate in class.

Robby was diagnosed in January of his kindergarten year. He returned to kindergarten the same day he got out of the hospital. His teacher was wonderful. She moved the desks around in the classroom so that if Robby got tired, she would go get his cot and put it in the center of the classroom so he could lay down and still listen. If a child had a cold, she would move him/her to the other side of the classroom. The kids washed their hands at least four times a day. The teacher’s aide would sit in the rocking chair holding Robby if he was sad.

  • Bring a pediatric oncology nurse or school liaison into the class to talk about brain and spinal cord tumors and answer questions. If treatment is lengthy, this should be done at the beginning of each new school year to prepare the new classmates. Because the sick child may be given special privileges that could cause other students to feel upset or jealous, the nurse or school liaison should also explain the reasons for different rules or privileges.

My 16-year-old son was allowed to leave each textbook in his various classrooms. This prevented him from having to carry a heavy backpack all day. They also let him out of class a few minutes early, because he was slower moving from room to room.

  • For elementary school children, enlist the aid of the school liaison or school counselor to help select the teacher for the upcoming year. You have no legal right to choose a particular teacher, but you are entitled to write to the administration to discuss your child’s particular needs and request that these needs be considered when making assignments for the upcoming year.

Because my son has had such a hard third-grade year, I have really researched the fourth-grade teachers. I sat in class and observed three teachers. I sent a letter to the principal, outlining the issues, and requested a specific teacher. The principal called me and said, “You can’t just request who you want. What would happen if all the parents did that? You’ll have to give me three choices just like everybody else.” I said, “My son has a seizure disorder, behavior problems, and learning disabilities. Can you think of a child who has a greater need for special consideration?” My husband and I then requested a meeting with him, and at the meeting he finally agreed to honor our teacher request.

  • Prepare the teacher(s) and your child for the upcoming year.

I asked for a spring conference with the teacher selected for the next fall and explained what my child was going through, what his learning style was, and what type of classroom situation seemed to work best. Then, I brought my son in to meet the teacher several times, and let him explore the classroom where he would be the next year. This helped my son and the future teacher get to know to one another.

  • Have a mental health therapist talk with your child about his emotions and his life both inside and outside of school.

My daughter went to a psychotherapist for the years of treatment. It provided a safe haven for frank discussions of what was happening, and also provided a place to practice social skills, which were a big problem for her at school.

  • Realize that teachers and other school staff can be frightened, overwhelmed, and discouraged by having a child in their classroom with a life-threatening illness. Accurate information and words of appreciation can provide much-needed support.

It can be so helpful for the school staff to have periodic meetings to address concerns, fears, progress, or to learn about upcoming procedures. I don’t think enough parents know they can request meetings (Individualized Education Program [IEP] or otherwise) as they feel the need, and so can school staff. When Matt started school (elementary), I requested monthly inclusion meetings for the first semester and then every other month during the second semester with his IEP team. We wrote this in his IEP so it actually happened. I learned to do this from a parent much wiser than me!