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Children Diagnosed With Cancer: Returning to School

When a child or teen is diagnosed with cancer, families and parents will face and need to cope with many problems. Here are ideas for helping your child go back to school after diagnosis. This is one in a series of documents for parents and loved ones of a child with cancer. The other pieces cover how to cope with the cancer diagnosis, understanding the health care system, late effects of cancer treatment, and financial and insurance matters.

Parents may think school isn’t safe for their sick child. They worry it might be overwhelming. They might be afraid their child will get infections, become overly tired, or might be teased for being different. But it’s important for children return to school as soon as they can after they’re diagnosed with cancer. Most children see school as more than just a place for learning; it’s also a place for fun and friendship.

Going back to school might be a challenge or a relief for the child with cancer. Either way, it gives the child the clear message that they have a future and potential for a full recovery from cancer. Parents will benefit, too, when their lives become more normal. Siblings will also begin to get some much-needed extra attention when the child goes back to school. It truly is a “win-win” situation for the child and the whole family.

Good communication starts early.

After your child is diagnosed and long before any plans are made for them to return to school, talk with your child’s teachers and school counselor about the cancer. You also might need to write a letter to the principal about the child’s diagnosis and treatment plan. The school needs to know the child’s type of cancer, the projected timeline for treatment, and how long you expect your child to be out of school.

Keeping the school informed while your child is out

You’ll need to keep these lines of communication open as the school year goes on; this benefits both the teachers and your child. As much as possible, your child should keep up with school work, even while in the hospital, and also at home before going back to school. Each state has laws to help make this possible.

Including the school nurse in these discussions is helpful, too. The nurse may be needed if the child feels ill at school, or needs medicines or other health services during the school day.

Planning the return to school

During your child’s cancer treatment, ask the doctor and the cancer care team to estimate when they think your child will be able to return to school. After you have a likely date, you can talk with the cancer team social worker and/or child life specialist to get some ideas about the next steps of this process.

Meeting the teacher, principal, and school nurse (if there is one) before the child goes back to school is very important so that everyone knows what to expect. Get the cancer team to help you write a letter explaining any expected changes in the child’s routine and future plans. You’ll want to write down these things for the school’s records:

  • Any medicines the child will need to take and how to give them
  • Special devices the child will use and how to use them
  • What kinds of problems to watch for and report to you
  • Any special precautions that need to be taken or information you need to know, for instance, if a fellow student develops chicken pox or some other illness that might be a problem for your child
  • Emergency management of possible problems
  • Medicines, treatments, or activities that your child can’t have or do
  • Whom to call with questions and emergency contact information

It may also help your child to meet with the teacher, principal, secretary, and/or school nurse before starting back to school. Knowing who to go to for help can make it easier for your child if problems do come up. Some hospitals and schools have school re-entry programs, in which a school liaison or advocate:

    · Meets with the child and family

    · Finds out what help is needed to return to school

    · Contacts the school

    · Sets up meetings to inform staff of any special needs the child may have

Except for any special needs, you’ll want your child to be treated like everyone else – as normally as possible. But you want to be sure that the school staff knows how to reach you right away if problems come up. It’s also good to leave contact information for another person in case you can’t be found quickly.

Special accommodations

After cancer, children often need help with learning that they did not need before. Sometimes called special accommodations, this help may include special equipment, using audio books, or getting help with certain physical activities. The teachers and principal will need to know about this, as will the school counselor and nurse.

In the meeting held before the child starts back to school, a social worker or nurse will talk with the teachers, parents, and child about how to help the child adjust to being in school again. Even if special accommodations are not likely to be needed, you can still ask for a meeting soon after the child’s return to develop an Individual Educational Plan (IEP). This way you can make plans to address any problems early. (See the section called “What is an IEP or 504 plan?”)

Adjusting and tailoring the plans

Keep in mind that planning for the return to school is just a start. Even the meeting to develop the IEP is not the end of it. Plans will need to be changed as the child’s needs change. It’s important to stay in touch with the school even after plans are set up to help support the child while in school. Planning, reviewing, and updating educational plans can go on for years after cancer treatment is over.

Physical changes can cause problems at school.

Physical problems after cancer treatment can affect a child’s ability to get around and perform normally at school. Schools may need to accommodate a child’s physical needs after cancer treatment.

For example, if fatigue and/or weakness make it too hard for them to carry books, the child may need 2 sets of books, one for home and one for school. Some children may need to be excused from certain physical education activities to avoid severe fatigue during later classes. Brief rest periods or shorter school days may be needed. Teens may need locker assignments closer to classrooms to get to class on time.

Dry mouth or weight loss caused by treatment may mean the child needs to carry a water bottle, or be excused for extra snacks during the day. Children who have bladder or bowel problems after treatment may need long-term bathroom passes so they can take care of these needs without calling attention to the problem.

Be sure to ask your child every week or so about any concerns they are having after returning to school. Some might need to be addressed.

Other changes due to cancer treatment may surface later. For more on these, see Children Diagnosed With Cancer: Late Effects of Cancer Treatment.

How your child’s cancer may affect schoolwork

Most children adjust well to school after cancer treatment. But cancer and its treatments can cause emotional and cognitive (ability to think and reason) changes, which can affect the child at school. You can help your child by watching for problems, so they can be dealt with as soon as possible, before they become hard to manage.

A child who has had cancer may have physical changes, such as short-term weight loss or gain, hair loss, and skin color changes. This may affect how other children see them and interact with them. A child who feels alone and different is more likely to have problems at school. Some of this may be avoided or minimized if the child is prepared and has the support of school staff.

If your child has a learning problem

If your child needs extra help learning, keep in mind that all children have a right to education in the least restrictive environment. This means that your child should be with other non-impaired children as much as possible. If parents have an issue with the school and the education their child is getting, they have the right to request a third party mediator to settle disagreements.

It’s best to meet with the school psychologist or counselor first. In many schools, the counselor meets with the family, and refers them to the psychologist. The psychologist can test your child for learning problems. If your child has had radiation to the brain, you may want to ask for testing, whether you notice a problem or not. Testing can be done for reading, writing, math skills, memory, comprehension, attention, concentration, and fine motor skills. After getting all the results, the school can develop an Individual Education Plan (IEP) or a 504 plan for your child.

What is an IEP or 504 plan?

An Individual Education Plan (IEP) or a 504 Plan is a plan developed by both parents and teachers to meet the individual needs of a student. If your child meets all of the stringent legal requirements to qualify as a special education student, the plan is called an IEP; if not, it’s called a 504 Plan.

The plan describes your child’s learning problem and sets specific goals for your child’s education. It includes referrals to other services if needed, such as occupational therapy or speech therapy, and provides for regular evaluation of the plan. Sometimes students do better when their work is oral and not written. They may do better when they can use a computer, audiobooks, or are given more time to complete assignments. These are the kinds of things included in the plan. Your child’s IEP or 504 Plan can be changed at any time to address any cognitive changes caused by the cancer and/or its treatment.

It can seem pretty unfair to have cancer and then to struggle to go back to school. But learning as much as you can about possible problems can help you and your child adjust faster. There are other resources that may help you. See the “To learn more” section for more details and other resources.

What if my child doesn’t want to go to school?

Finding excuses to miss school could be a sign that your child is struggling with some part of going back there. If your child can tell you why there are problems at school, you may want to meet with the school teacher, counselor, and principal to see what can be done to address these concerns. For example, they might suggest shorter days for the child who tires easily. Or they might come up with a plan that combines time at school and home tutoring. It’s best to find ways for your child to be in school at least part of the time, since school lets your child be with other kids and find a routine that works.

Older kids and teens may not want to go back to school because they look different, or because their long absences have changed their social standing with friends. If treatment has changed the way they learn, that can also be frustrating and hard to deal with. Again, extra support at home and at school can help with the transition back to school. Don’t hesitate to address any concerns that might come up. Many things can be done to make the return to school more comfortable for you and your child.

My child isn’t sure what to say when others ask about the cancer.

Talk with your child about going back to school and about being ready for questions classmates may have about the cancer. Explain to your child that friends may not understand much about cancer and might say and ask some strange things. Some typical questions are: “What is cancer?”, “Are you going to die?”, “Can I catch it?”, and “Can you still play?” Talk with your child about how to answer each of these questions. It may help younger children if a nurse or teacher explains to the class that cancer is not contagious and no one did anything to cause it.

Some children are happy to know that they can respond to many questions without a long explanation. For instance, they may say:

  • Thanks for asking, but it’s kind of hard to talk about this at school.
  • I don’t know the answer to that question.
  • Maybe you can ask the teacher or the nurse about that.

Depending on the situation, the child might want to use one of these answers then change the subject in a friendly way, maybe with talk about school, an offer to play, or another non-cancer-related topic.

Some teens may want to know where they can go to take a break at school or get special support if they need it. Others might not want to seem different from their friends, so they don’t want to do anything that singles them out. As with younger children, it helps for teens to talk with a parent or counselor about answering questions in a way that feels right for them. Some may choose not to talk about their cancer at school. Others may want to be ready with quick and easy answers for common questions or comments.

Every child has their own coping style. Helping them figure out what feels best for them before they go back to school will help them handle questions from friends and classmates in a way that feels OK to them.

To learn more

More information from your American Cancer Society

We have selected some related information that may also be helpful to you. These materials may be ordered from our toll-free number, 1-800-227-2345, and most can be read on our website, www.cancer.org.

Treatment-related concerns

Cancer in Children

Nutrition for Children With Cancer (also in Spanish)

Children Diagnosed With Cancer: Understanding the Health Care System (also in Spanish)

Children Diagnosed With Cancer: Financial and Insurance Issues

Children Diagnosed With Cancer: Late Effects of Cancer Treatment

Cancer Information on the Internet

Coping and emotions

What Happened to You, Happened to Me (booklet for kids and teens with cancer)

When Your Child's Treatment Ends: A Guide for Families (booklet for families)

Books from your American Cancer Society

The following books are available from your American Cancer Society. Call us to ask about costs or to place your order.

Angels & Monsters: A Child’s Eye View of Cancer (for adults and teens)

Jacob Has Cancer: His Friends Want to Help (coloring book for an elementary school child whose friend has cancer)

Because…Someone I Love Has Cancer: Kids’ Activity Book (best for ages 5 to 10 who have a loved one with cancer)

Imagine What’s Possible: Use the Power of Your Mind to Take Control of Your Life During Cancer (visualization techniques for children with cancer in grades 4 through 7)

Cancer Caregiving: A to Z (for adults taking care of someone with cancer at home)

National organizations and websites*

Along with the American Cancer Society, other sources of information and support include:

For adults

LIVESTRONG
Toll-free number: 1-855-220-7777
Website: www.livestrong.org

    Has information on how parents can advocate for a child's educational needs as they return to school after cancer treatment. The LIVESTRONG at School curriculum (free online at www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/LIVESTRONG-at-School) offers lessons for grades K–12 to teach students about cancer.

Leukemia & Lymphoma Society
Toll-free number: 1-800-955-4572
Website: www.lls.org

    Offers free educational materials for parents, classmates, and teachers through the “The Trish Greene Back to School Program,” which includes publications, DVDs, videos, and programs that help explain how kids with cancer feel, why they may look different, what type of treatment they’ve had, and special needs they may have on their return. Learn more at www.lls.org/#/diseaseinformation/managingyourcancer/newlydiagnosed/childhoodcancer/school/trishgreene/

National Dissemination Center for Children with Disabilities (NICHCY)
Toll-free number: 1-800-695-0285 (also for TTY)
Website: www.nichcy.org

    Provides information about disabilities and disability-related issues for families, educators, and other professionals; special focus on educational rights and school issues

Childhood Cancer Ombudsman Program
Toll-free number: 1-877-217-4166
Website: www.childhoodbraintumor.org

    Though this program is offered by the Childhood Brain Tumor Foundation, services are provided for survivors of ANY type cancer. They provide information and options to families so that they may better exercise their rights in making decisions about school, rehab, and insurance. They research and answer questions on many topics, including Individualized Education Plans (IEPs) and related services.

American Childhood Cancer Organization (ACCO)
Toll-free number: 1-855-858-2226
Website: http://acco.org

    Website offers support for families with cancer, as well as parent support groups, insurance and legal advice, and IEP information. Also has books for children, caregivers, and teachers, including Educating the Child With Cancer: A Guide for parents and Teachers.

CaringBridge
Telephone: 651-789-2300
Website: www.caringbridge.org

    Offers free, personal websites that help you stay connected to family and friends during illness, treatment, and recovery; lets patients and caregivers keep loved ones informed.

For teens and children

2bMe
Website: www.2bme.org

    2bMe is part of Look Good Feel Better for Teens. For those ages 13 through 17, it gives both guys and girls information on many appearance-related, social, and nutritional side effects of treatment

Starlight Children’s Foundation
Toll-free number: 1-310-479-1212
Website: www.starlight.org

    Website provides a safe, monitored online support group for teens with cancer. Coping with Chemo is a series of animated stories that includes topics like disclosing to friends and going back to school

Group Loop (a subsite of the Cancer Support Community just for teens)
Toll-free number: 1-888-793-9355
Website: www.grouploop.org

    An online place for teens with cancer or teens who know someone with cancer to connect with other teens away from the pressures of classes, responsibilities, and treatment schedules. Group Loop has online support groups, chat rooms, information, and more.

Teens Living with Cancer
Website: www.teenslivingwithcancer.org

    An online-only resource that focuses on teen issues and provides tips on dealing with “weird body issues,” school concerns, and personal relationships.

*Inclusion on this list does not imply endorsement by the American Cancer Society.

No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-227-2345 or visit www.cancer.org.

References

Fasciano K. ASCO Expert Corner: Returning to School After Cancer. Accessed at www.cancer.net/patient/Coping/Age-Specific+Information/Cancer+in+Young+Adults/Life+After+Treatment/Returning+to+School+After+Cancer on December 17, 2014.

Katz ER, Gonzalez-Morkos B. School and Academic Planning. In Wiener LS, Pao M, Kazak AE, et al (Eds), Quick Reference for pediatric oncology clinicians: The psychiatric and psychological dimensions of pediatric cancer symptom management. Charlottesville, VA, 2009: IPOS Press: 223-235.

Leigh LD, Miles MA. Educational Issues for Children with Cancer. In Pizzo PA, Poplack DG (Eds), Principles and Practice of Pediatric Oncology, 4th Ed. 2002: Lippincott, Williams & Wilkins, 1463-1476.

Leukemia and Lymphoma Society. Learning & Living with Cancer: Advocating for your child’s educational needs. 2013. Accessed at www.lls.org/resourcecenter/freeeducationmaterials/childhoodbloodcancer/learninglivingwithcancer on December 17, 2014.

Noll RB. School and Peer Relationships. In Wiener LS, Pao M, Kazak AE, et al (Eds), Quick Reference for pediatric oncology clinicians: The psychiatric and psychological dimensions of pediatric cancer symptom management. Charlottesville, VA, 2009: IPOS Press: 220-232.

Onconurse.com. Childhood Cancer and School. Accessed at www.oreilly.com/onconurse/factsheets/childhood_cancer_&_school.pdf on December 11, 2014.

Ped-Onc Resource Center. Back to School. Accessed at www.ped-onc.org/cfissues/backtoschool/backtoschool.html on December 11, 2014.

Upton P, Eiser C. School experiences after treatment for a brain tumour. Child Care Health Dev. 2006;32(1):9-17.


Last Medical Review: 01/06/2015
Last Revised: 03/11/2015