Childhood Cancer and School
Children with cancer often experience disruptions in their education due to repeated
hospitalizations, side effects from chemotherapy, or generally not feeling well enough to
fully participate in daily school life. As their health improves and treatment allows,
returning to school can be either a relief or a challenge for children with cancer.
For many children, school is a refuge from the world of hospitals and procedures--a place for fun, friendship, and learning. Because school is the defining structure of every
child's daily life, returning to school signals normalcy; indeed, expectations of school
attendance impart a clear and reassuring message that there is a future. Other children,
especially teens, may dread returning to school because of temporary or permanent
changes to their appearance or concerns that prolonged absences may have changed their
social standing with their friends. Additionally, school can become a major source of
frustration for children who develop learning disabilities as a result of treatment. These
learning differences, if handled in an insensitive or uninformed manner, can affect a
child's confidence and self-esteem. The issues of educating children with cancer are
complex, but most can be managed successfully through planning and good
Keeping the school informed about treatment
Communicating with the school often does not enter a parent's mind during the
nightmarish days after diagnosis. Keeping the school informed, however, lays the
foundation for the months or years of collaboration as the child goes through the rigors of
treatment for cancer. Parents need to forge a strong alliance with the school professionals
to ensure that their child, who may be emotionally and/or physically fragile, continues to
be welcomed and nurtured at school.
As soon as your child is diagnosed, notify the principal in writing of the child's diagnosis
and hospitalization. The next step in ensuring a good relationship is choosing an advocate
to be the liaison among hospital, family, and school. The advocate will work to keep
information flowing between the hospital and school, and will help pave the way for a
successful school re-entry for the sick child. Often the advocate is the hospital social
worker, but it may also be a hospital or school nurse, psychologist, principal, or other
motivated individual. The most important qualifications for this role are good
communication skills, knowledge of educational programs and procedures, comfort in
dealing with school issues, and organizational skills. It must be someone you trust to act
fairly on your child's behalf.
You will need to sign a release form authorizing the school and hospital to exchange
information. Schools have these forms.
The advocate should locate a contact person at the school (or hospital) and should
provide frequent updates about the child's medical condition, treatment, emotional state,
and tentative re-entry date. The advocate should encourage questions and address staff
concerns about having a seriously ill child in school.
Keeping teacher and classmates involved
While your child is hospitalized, it is vital to his well-being to stay connected with his
teacher and classmates. Children attend school not only for instruction but also to develop
communication and social skills.
The teacher should be getting updates through the advocate, but the parent can help by
calling the teacher periodically and bringing notes or taped messages to the classroom.
The following are suggestions for keeping the teacher and classmates involved:
- Give the teacher copies of the Candlelighters' book Educating the Child with Cancer
and the American Cancer Society's Back to School: A Handbook for Teachers of
Children with Cancer.
- Have the pediatric oncology nurse or social worker come to class to give a
presentation about what is happening to their classmate and how he will look and feel
when he returns. This should include a question-and-answer session to clear up
misconceptions and allay fears. Teenagers should be involved in deciding what
information should be given to classmates.
- Send pictures of your child on treatment to the school. Some families fill photo
albums with pictures that are shared with the classmates.
- Encourage classmates to keep in touch by sending notes, calling on the phone,
sending class pictures, or making a banner.
- Call the American Cancer Society, (800) ACS-2345, and ask for a comprehensive list
of the printed materials and outreach programs available for teachers and parents.
Canadians can find information through the Canadian Cancer Society's Cancer
Information Service at (888) 939-3333.
Keeping up with schoolwork
Whenever your child is able, keeping up with schoolwork should be a priority. Learning
can continue despite school absences. Parents should communicate with the teacher to
keep abreast of the subjects being covered in school. Often, the teacher will send
assignments and materials home with siblings, or arrangements can be made for pick-up.
To help your child keep up in school, you need to request special education eligibility.
Then the child can qualify for an itinerant teacher. Without an IEP or 504 plan, the child
is legally entitled to nothing except what the school voluntarily provides, and this is not
Joanne Holt, a high school Director of Special Education, suggests:
If children are having difficulty remaining interested in schoolwork due to fatigue and
not feeling well, it may be useful to consider alternative learning activities. In such
circumstances, a parent and child might identify an area of special interest or curiosity
(e.g., dinosaurs, space, animals, nature, the Wild West, etc.). Children may find it more
interesting to develop reading skills, learn math concepts, develop writing skills, and
learn research and study principles in the context of a high-interest area while still
learning and maintaining the concepts being introduced in school. Play is a significant
part of such activities and can often spark imaginative activities. It is important that the
school be aware of and supportive of such an approach; most often they are and, in fact,
may be valuable resources for ideas and activities. The goal is to encourage confidence
and prepare the child for the least disruptive re-entry to school routines.
Siblings need help, too
The diagnosis of cancer catastrophically affects all members of the family. Siblings can
be overlooked in the early months when the parents are spending most of their time
caring for the ill child at the hospital, clinic, or in the home. Many siblings keep their
feelings bottled up inside to prevent placing additional burdens on their distraught
parents. Often, the place where siblings act out the most is at school. It is very common
for siblings to withdraw or become disruptive in the classroom, cry easily, become
frustrated, fall behind in class work, bring home failing grades, cut classes, become
rebellious towards authority, or have fistfights with classmates. Siblings, like parents, are
overwhelmed by feelings, and generally have fewer coping skills.
You should send a letter to the school principal of each sibling, asking the principal to
alert teachers, counselors, and nurses about the cancer diagnosis in the family and ask for
their help and support for the siblings.
This parent regrets not having been aware of the impact of cancer on a sibling:
Lindsey was in kindergarten when Jesse was first diagnosed. Because we heard nothing
from the kindergarten teacher, we assumed that things were going well. At the end of the
year, the teacher told us that Lindsey frequently spent part of each day hiding under her
desk. When I asked why we had never been told, the teacher said she thought that we
already had enough to worry about dealing with Jesse's illness and treatment. She was
wrong to make decisions for us, but I wish we had been more attentive. Lindsey needed
Remember to include the siblings' teachers in all conferences at school. If the siblings'
teachers are in different schools or they have several teachers (e.g., in middle school and
high school), ask the principal to send a school representative. They need to be aware of
the stresses facing the family, and understand that feelings may bubble to the surface in
their classroom. It is essential that parents advocate for the healthy child's emotional and
educational needs as well as their sick child's.
Returning to school
Although it is normal that parents don't think about school during the early efforts to save
their child's life, hospital personnel should reinforce the importance of an early return to
school. Going to school helps children regain a sense of normalcy and provides a lifeline
of hope for the future.
Preparation is the key to a successful re-entry to school. The parent should ask the
physician or primary nurse to prepare a letter for the school staff containing the following
- The student's health status and its probable affect on attendance.
- Whether she will attend full or half days.
- Whether he can attend unrestricted general physical education classes, general
physical education with restrictions (e.g., no running), or Adaptive Physical
Education for disabled children.
- How much recess is allowed, if any.
- A description of any changes in her physical appearance (e.g., will she bring a wig?).
- Her feelings about returning to school.
- Any anticipated behavioral changes resulting from medication or treatment.
- The possible effect of medications on her academic performance.
- When any medications or other health services need to be given at school.
- A reminder to never give any medication, especially aspirin, which can cause
uncontrollable bleeding, without parental permission.
- Any special considerations such as extra snacks, rest periods, extra time to get from
class to class, use of the nearest restroom (even if it's the teacher's), and the need to
leave for the restroom without permission.
- Dietary restrictions, if any.
- Concerns about exposure to communicable disease.
- A list of signs and symptoms requiring parent notification--e.g., fever, nausea, pain,
swelling, bruising, or nosebleeds. If parents are divorced, which parent to notify or
which to notify first.
- A reminder that the teacher's job is to teach, and the parent and nurse will take care of
all medical issues.
Once the faculty has a chance to read the letter, request an IEP meeting that includes
faculty, administrators, the school nurse, school counselor and psychologist, and special
education personnel. At this meeting, answer any questions about the information
contained in the letter, pass out booklets on children with cancer in the classroom,
formulate a communicable disease notification strategy (if necessary), discuss the
ongoing need for appropriate discipline, and do your best to establish a rapport with the
entire staff. Take this opportunity to express appreciation for the school's help and your
hopes for close collaboration in the future to create a supportive climate for your child
This parent expressed gratitude both to the teacher and to school officials:
I still feel unbelievable gratitude when I think of the school principal and my daughter's
kindergarten teacher that first year. The principal's eyes filled with tears when I told her
what was happening, and she said, "You tell us what you need and I'll move the earth to
get it for you." She hand-picked a wonderful teacher for her, made sure that a chicken
pox notification plan was in place, and kept in touch with me for feedback. She recently
retired, and I sent her a glowing letter, which I copied to the school superintendent and
school board. Words can't express how wonderful they were.
The following are additional parent suggestions on how to prevent problems through
preparation and communication:
- Keep the school informed and involved from the beginning. This fosters a feeling that
"we're all in this together."
- Reassure the staff that even if the child looks frail, he really needs to be in school.
This child's school librarian responded helpfully:
- Reassure other children that your child poses no health threat to anyone.
Bring the pediatric oncology nurse back into the class to talk about cancer and answer
questions whenever necessary. This should also be done at the beginning of each new
year to prepare the new classmates.
- Ask the school to bend some rules and policies if you think it will help your
youngster. For example, wearing a hat can sometimes eliminate teasing and leaving a
three-ring binder with notes, papers, tests, etc., in the classroom can prevent the need
to carry a heavy backpack.
- For elementary school children, enlist the aid of the hospital advocate or school
counselor to help select the teacher for the upcoming year. Although this violates the
policy at some schools, it can go a long way toward preventing problems. Although
you have no legal right to this, you can ask nicely to have the policy modified for
- Prepare both teacher(s) and student for the upcoming year.
- Get professional help. The school counselor can talk with your child about problems
with grades or classes. A mental health professional can help your child express
emotions about what is happening in school and other areas in your child's life.
- Realize that teachers and other school staff can be frightened, biased, overwhelmed,
and discouraged by a child with a life-threatening illness in their classroom. Accurate
information and words of appreciation can provide much needed support.
Avoiding communicable diseases
Communicable diseases can be dangerous to immunosuppressed children. To prevent
exposure, parents need to work closely with the school to develop a chicken pox,
shingles, and measles outbreak plan. Check to see if your child's school already has an
organized disease notification plan. Parents need to be notified immediately if their child
has been exposed to chicken pox so that the child can receive the varicella zoster immune
globulin (VZIG) injection within 72 hours of exposure. Several methods are used to
ensure prompt reporting of outbreaks. Some parents notify all the classmates' parents by
letter to ask for help. If the parent has a good rapport with the teacher, she can have the
teacher report any cases, as in the arrangement for this child:
My daughter's preschool was very concerned and organized about the chicken pox
reporting. They noted on each child's folder whether he or she had already contracted
chicken pox. They told each parent individually about the dangers to Katy, and then
frequently reminded everyone in the monthly newsletters. The parents were absolutely
great, and we always had time to keep her out of school until there were no new cases.
With the help of these parents, teachers, our neighbors, and friends, Katy dodged
exposure for almost three years. She caught chicken pox seven months after treatment
ended and had a perfectly normal case.
Other parents enlist the help of the office workers who answer the phone calls from
parents of absent children, the way this child's parents did:
We asked the two ladies in the office to write down the illness of any child in Mrs.
Williams' class. That way the teacher could check daily and call me if any of the kids in
her class came down with chicken pox.
What about preschoolers?
A large proportion of children diagnosed with cancer are preschoolers. Parents face the
dilemma of continuing preschool through treatment, risking exposure to all the usual
childhood viruses and diseases, or holding their child out, which denies them the
opportunity for social growth and development. The decision is a purely personal one
made after considering the following issues:
- Has the child already had chicken pox?
- Is the child already enrolled and comfortable in a preschool program?
- Are social needs being met by siblings and/or neighbors?
- Is preschool an option, given medical considerations?
The terminally ill child and school
In the sad event that the child's health continues to deteriorate and all possible treatments
have been exhausted, it is time for the students and staff to discuss ways to be supportive
during his final days. Classmates need timely information about their ill classmate, so
that they can deal with his declining health and prepare for his death. The possibility of
death from cancer should have been sensitively raised in the initial class presentation
prior to the student's return to school, but additional information is needed if the
student's health declines. The following are suggestions on how to prepare for the death
of a classmate:
- The entire school staff needs to be in continuous communication with parents and
hospital. They need to be reassured that death will not suddenly occur at school, that
the child will either die at home or in the hospital.
- Staff needs to be aware that participation at school is vital to a sick child's well-being.
They should welcome and support the child's need to attend school as long as
- Staff can design flexible programs for the ill student--for example, part-time school
attendance and/or part-time home tutoring (if appropriate) for a child too weak to
attend school all day.
- Staff can designate a "safe person" and "safe haven" in the school building so that the
student can retreat if physically or emotionally overwhelmed.
- The hospital advocate should meet with school personnel and the student's class to
answer questions about the student's health status and to address fears and
misconceptions about death.
- It is helpful to provide reading materials on death and dying for the ill child's
classmates, siblings' classmates, teachers, and staff.
- Extraordinary efforts should be made to keep in touch once the child can no longer
attend school. Cards, banners, tapes, telephone calls, or conference calls (on the
principal's speaker phone) from the entire class are good ways to share thoughts and
- Visits to the hospital or child's home should be made, if appropriate. If the child is
too sick to entertain visitors, the class could come wave at the front window and drop
off cards or gifts.
- The class can send a book of jokes, a Walkman and tapes, or a basket of small gifts to
- The class can decorate the family's front door, mailbox, and yard when the child is
returning home from the hospital.
All of the above activities encourage empathy and concern in classmates, as well as help
them adjust to the decline and imminent death of their friend.
When a child dies, a memorial service at school gives students a chance to grieve. School
counselors or psychologists should talk to the classmates to allow them to express their
Parents appreciate receiving stories or poems about their departed child from classmates,
and attending the funeral also supports the grieving family.
This fact sheet was adapted from Childhood Cancer: A Parent's Guide to Solid Tumor
Cancers, by Honna Janes-Hodder and Nancy Keene, © 2001 by Patient-Centered Guides.
Also available is Childhood Leukemia: A Guide for Parents, Families, and Caregivers,
Second Edition, by Nancy Keene, © 2001 by Patient-Centered Guides. For more
information, call (800) 998-9938 or see www.patientcenters.com.