Children Diagnosed With Cancer: Returning to School

When a child is diagnosed with cancer, families and parents will need to know about and cope with many problems. This document, which offers ideas for coping and moving forward, is one in a series of documents for parents and loved ones of a child with cancer. The other documents have information on how to cope with the cancer diagnosis, understanding the health care system, late effects of cancer treatment, and financial and insurance issues.

Adults have jobs to anchor them in life; children have school. When a child is out of school, depression, anxiety, lack of interest, and poor self-esteem can result. Without school, a child can feel lost and without a sense of purpose.

Parents may think school is a potentially threatening place for their sick child. They worry it might be overwhelming for their child. They might be afraid their child will get infections, become overly tired, and maybe be teased for being different.

It is important that children return to school as soon as they can after they’re diagnosed with cancer. Some children see school as more than just a place for learning; it’s also a place for fun and friendship. Going back to school can be a challenge or a relief for the child with cancer. Either way, it gives the child the clear message that they have a bright 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.

If you have not seen Children Diagnosed With Cancer: Dealing With Diagnosis, you might want to read it before or while you are making plans for the child’s return to school. You can read it online at www.cancer.org, or call us at 1-800-227-2345 for a free copy.

Good communication starts early.

After your child is diagnosed and long before any plans are made for their 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 hospitalization. The school needs to know the type of cancer, any treatment the child may be getting, the expected reactions to the treatment, and how long an absence you expect.

Keeping the school informed while your child is out

You will need to keep these lines of communication open as the school year goes on, for the benefit of both the teachers and your child. As much as possible, the child should keep up with school work even while in the hospital, and 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 to plan the return to school. After you have a rough date, you can talk with the cancer team social worker and child life specialist to get some ideas about putting this plan into effect. 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

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 will want to write down 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
• Emergency management of possible problems
• Medicines or treatments that your child cannot have
• Whom to call with questions and contact information

It may also help your child to meet with the teacher, principal, secretary, and school nurse before starting back to school. Knowing who to go to for help can make it easier for your child if unexpected problems arise.

Except for the special needs, you will 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 family member in case you can’t be found quickly.

Special alert — chicken pox

Certain childhood illnesses are common in schools. One of these is chicken pox. You need to know right away if someone in your child’s class comes down with chicken pox. Your child will need special treatment for chicken pox exposure. Some parents get the teacher’s help in sending a letter to all the other parents in the child’s class explaining the situation. Your cancer care team can help you with a sample letter. The letter should list your name and a phone number so that you can be called and treatment given to your child quickly enough to prevent serious illness.

Special accommodations

Many times after cancer children 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 the nurse.

In the meeting 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 (see the section called “What is an IEP or 504 plan?”). This way you can plan to address any problems early.

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 Individual Educational Plan is not the end of it. Plans will need to be changed as the child’s needs change. It is important to stay in touch with the school even after plans are set up to help support the child in school. Planning, evaluating, 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. He might have an amputation or an obvious scar from cancer surgery. He might have hearing loss from high doses of antibiotics or chemotherapy. Chemotherapy can also cause fatigue (extreme tiredness), weakness, and a low blood count that may make the child prone to infection. If a child has had a bone marrow transplant or total body irradiation, growth may be delayed.

Schools may need to make special accommodations for a child’s physical needs after cancer treatment. For example, if fatigue makes it too hard for them to carry books, the child may need 2 sets of books, one for home and one for school. 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 chemo 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 that they can take care of these needs without calling attention to the problem.

Be sure to check with your child every week or so about any problems he or she is having after returning to school. Some unexpected ones might need to be addressed.

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 before they become hard to manage.

A child who has had cancer may have short-term weight loss or gain, hair loss, skin color changes, and pain. 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 support from school staff.

Radiation treatment to the head may interfere with intelligence. This is not usually seen right away, but can be seen later. If the child is younger when getting the radiation, the effects may be greater.

Children may have some learning problems as a result of treatment. Some of these include:

• Trouble paying attention; may tend to “space out”
• Difficulty understanding and remembering visual information, such as what was seen on a blackboard or in a book
• Problems writing quickly or accurately
• Trouble keeping up with new material
• Difficulty with math problems, columns, or graphs
• Problems planning and organizing
• Inability to copy from a blackboard
• Trouble reading

You may also notice:

• Your child was an A student before the illness and now makes C’s with a great deal of effort.
• Your child reads a story but can’t retell it once he has finished reading it.
• Your child is frustrated by school and complains about not understanding the teacher.

It’s important to remember that creativity and the ability to learn through hearing (rather than reading) is not usually affected by cancer or its treatment. And noticing these problems and getting help with them right away is important for your child’s learning and self-esteem.

See our document called Childhood Cancer: Late Effects of Cancer Treatment for more information on this.

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 will 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 is best to meet with the school psychologist or counselor first. In many schools, the counselor meets with the family first, and refers 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. They will test reading, writing, math skills, memory, comprehension, attention, concentration, and fine motor skills. After getting all of this information, 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 a 504 Plan. The plan describes your child’s learning problem and sets specific goals for your child’s education. It will include referrals to other services if needed, such as occupational therapy or speech therapy, and provide 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. Your child’s IEP or 504 Plan can be changed at any time to address any cognitive changes due to the cancer 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 potential problems can help you and your child adjust faster. There are other resources that may help you. One booklet, Educating the Child With Cancer, is written by both parents and educators. Parents can get a free copy from the American Childhood Cancer Organization. See the “To learn more” section for more details.

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

Finding excuses to miss school suggests that the child is struggling with some part of going back there. If the 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 the concerns. For example, they might suggest shorter days for the child who has fatigue. Or they may come up with a plan that combines time at school and home tutoring. It really helps 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 this transition back to school. Nurses, school liaisons, and school counselors can help prepare the teacher and classmates for your child’s return 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 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 that cancer is not contagious and that 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 learn to change the subject in a friendly way, maybe with talk about school, an offer to play, or another non-cancer-related topic.

Teens may want to know where they can go for a break or special support during the day. But 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 a coping style. Helping them figure out what feels best for them before they go back to school will help them deal with 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. Some can be read online at www.cancer.org.

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

Cancer Information on the Internet

Children Diagnosed With Cancer: Financial and Insurance Issues

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

Children Diagnosed With Cancer: Late Effects of Cancer Treatment

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

When Your Brother or Sister Has Cancer (booklet for middle school age siblings of a child with cancer)

Books 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 (a coloring book for a child with a friend who has cancer)

Because…Someone I Love Has Cancer: Kids’ Activity Book (best for ages 5 to 10, for those with a friend or family member who has cancer)

Imagine What’s Possible: Use the Power of Your Mind to Take Control of Your Life During Cancer (for children with cancer in grades 4 through 6)

Caregiving: A Step-By-Step Resource for Caring for the Person with Cancer at Home (for adults taking care of someone with cancer at home)

National organizations and Web sites*

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

Web sites for adults

National Dissemination Center for Children with Disabilities (NICHCY)
Toll-free number: 1-800-695-0285 (also for TTY)
Web site: 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

American Childhood Cancer Organization (ACCO)
Toll-free number: 1-800-366-2223
Web site: http://acco.org/

Web site has sub-sections just for children and teens with cancer and their siblings, as well as support for adults dealing with children with cancer and parent support groups. Note that some of the books for children listed below are available from this group.

CureSearch (National Childhood Cancer Foundation and Children’s Oncology Group)
Toll-free number: 1-800-458-6223
Web site: www.curesearch.org

Provides up-to-date information about childhood cancer from pediatric cancer experts. Has sections on the Web site for patients, families, and friends to help guide them on how to support the child with cancer.

Hair Club for Kids
Toll-free number: 1-800-269-7384 (If you get voicemail, leave a message for call back.)
Web site: www.hairclub.com/hc_for_kids.php

Offers free hair restoration services to children ages 6 through 17 who have hair loss due to cancer treatments.

The National Children’s Cancer Society, Inc.
Toll-free number: 1-800-5-FAMILY (1-800-532-6459)
Web site: www.children-cancer.org

Services include an online support network for parents of children with cancer, educational materials, and financial assistance for treatment-related expenses.

Cancer.net
Web site: www.cancer.net/patient/Coping

Cancer information from the American Society of Clinical Oncology. Online, choose “Age-specific information,” then either “teens” or “children” to find more about coping with cancer in children or adolescents.

National Organization for Rare Disorders
Toll-free number: 1-800-999-6673
TDDY number: 203-797-9590
Web site: www.rarediseases.org

A group of more than 2,000 non-profit voluntary health organizations serving adults and children with rare “orphan” disorders. NORD keeps data on resources and refers to organizations only (they do not refer people to healthcare providers or treatment facilities).

CaringBridge
Telephone: 651-789-2300
Web site: www.caringbridge.org

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

National Cancer Institute
Toll-free number: 1-800-4-CANCER (1-800-422-6237)
TTY: 1-800-332-8615
Web site: www.cancer.gov

Provides accurate, up-to-date information about cancer to patients, their families, and the public. Offers a special booklet for teen siblings of a child with cancer at: www.cancer.gov/cancertopics/when-your-sibling-has-cancer

Web sites for teens and children

2bMe
Web site: www.2bme.org

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

Cancer Kids
Web site: www.cancerkids.com

An online-only resource designed to help kids, from ages 5 to 11, learn about cancer in a fun and interactive manner

Starlight Children’s Foundation
Toll-free number: 1-800-315-2580
Web site: www.starlight.org

Web site has animated stories and interactive programs to teach kids about chemo and procedures that may be done in the hospital; also provides a safe, monitored online support group for teens with cancer.

Beyond the Cure (part of the National Children’s Cancer Society for teens)
Web site: www.beyondthecure.org

Support and education for survivors of childhood cancer and their families

Group Loop (a subsite of the Wellness Community just for teens)
Toll-free number: 1-888-793-9355
Web site: 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
Web site: www.teenslivingwithcancer.org

An online-only resource dedicated to teens coping with a cancer diagnosis and treatment. It focuses on teen issues and provides resources to support teens, their families, and friends

Cancer Really Sucks
Web site: www.cancerreallysucks.org

An internet-only resource designed FOR teens BY teens who have loved ones facing cancer. Has answers and coping strategies to help deal with the emotions linked to a cancer diagnosis; “Q&A with a Cancer Survivor” offers a monitored, safe format for teens to post stories about their situations and ask other teens questions

I’m too young for this!
Web site: http://i2y.com

Social networking organization for young adult cancer survivors and care providers that offers support to help improve quality of life for young adults (older teens and adults up to age 39) affected by cancer.

SuperSibs!
Toll-free number: 1-888-417-4704
Web site: www.supersibs.org

Supports, honors, and recognizes 4- to 18-year-old brothers and sisters of children diagnosed with cancer so they may face the future with strength, courage, and hope.

Other publications*

For adults

Cancer & Self-Help: Bridging the Troubled Waters of Childhood Illness, by Mark A. Chester and Barbara K. Chesney. University of Wisconsin Press, 1995.

Care for Children and Adolescents with Cancer: Questions and Answers, National Cancer Institute. Available at www.cancer.gov/cancertopics/factsheet/NCI/children-adolescents or call 1-800-422-6237.

Childhood Brain and Spinal Cord Tumors: A Guide for Families, Friends, and Caregivers, by Tania Shiminski-Maher, Patsy McGuire Cullen, and Maria Sansalone. O’Reilly and Associates, 2001.

Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers, by Honna Janes-Hodder and Nancy Keene. O’Reilly and Associates, 1999.

Childhood Cancer Survivors: A Practical Guide to Your Future, by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. O’Reilly and Associates, 2000.

Children with Cancer: A Comprehensive Reference Guide for Parents (Revised and updated edition), by Jeanne Munn Bracken. Oxford University Press, 2010.

Educating The Child With Cancer: A Guide for Parents and Teachers, edited by Nancy Keene. American Childhood Cancer Organization, 2003. Can be ordered from http://acco.org/.

Living with Childhood Cancer: A Practical Guide to Help Families Cope, by Leigh A. Woznick and Carol D. Goodheart. American Psychological Association, 2002.

When Bad Things Happen to Good People, by Harold Kushner. First Anchor, 2004.

When Someone You Love is Being Treated for Cancer, National Cancer Institute. Available at www.cancer.gov/cancertopics/when-someone-you-love-is-treated, or call 1-800-422-6237.

Young People with Cancer: A Handbook for Parents, National Cancer Institute, 2003. Available at www.cancer.gov/cancertopics/youngpeople or call 1-800-422-6237.

Your Child in the Hospital: A Practical Guide for Parents, 2nd Ed., by Nancy Keene and Rachel Prentice. O’Reilly Media, 1999. (Also available in Spanish.)

Books for children

Although these books are intended for children, younger kids are helped more when an adult reads with and helps the child reflect about what different parts of the book mean to the child.

Chemo, Craziness and Comfort: My Book about Childhood Cancer, by Nancy Keene. American Childhood Cancer Organization, 2002. Can be ordered from http://acco.org/. For ages 6 to 12.

Childhood Cancer Survivors: A Practical Guide to Your Future (2nd Ed), by Kathy Ruccione, Nancy Keene, and Wendy Hobbie, 2006. For older teens.

Little Tree: A Story for Children with Serious Medical Problems, by Joyce C. Mills. Magination Press, 2003. For ages 4 to 8.

Living Well With My Serious Illness, by Marge Heegaard. Fairview Press, 2003. For ages 8 to 12.

My Book for Kids with Cansur [sic]: A Child’s Autobiography of Hope, by Jason Gaes. Viking Penguin, 1998. For ages 4 to 8.

What About Me? When Brothers and Sisters Get Sick, by Allan Peterkin and Frances Middendorf. Magination Press, 1992. For brothers and sisters of a child with cancer. For ages 4 to 8.

When Someone Has a Very Serious Illness: Children can learn to cope with loss and change, by Marge Heegaard. Woodland Press, 1991. For ages 6 to 12.

Why, Charlie Brown, Why? A Story About What Happens When a Friend is Very Ill, by Charles M. Schultz. Ballantine Publishing Group, 1990. For ages 6 to 12.

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/portal/site/patient/menuitem.169f5d85214941ccfd748f68ee37a01d/?vgnextoid=b09be05611d54110VgnVCM100000ed730ad1RCRD on June 10, 2011.

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 and Living with Cancer: Advocating for your child’s educational needs. 2005. Accessed at www.lls.org/resourcecenter/freeeducationmaterials/childhoodbloodcancer/learninglivingwithcancer June 10, 2011.

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. Patient-Centered Guides. Childhood Cancer and School. Accessed at www.onconurse.com/factsheets/childhood_cancer_&_school.pdf on June 10, 2011.

Ped-Onc Resource Center. Back to School. Accessed at www.ped-onc.org/cfissues/backtoschool/backtoschool.html on June 10, 2011.

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