Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Back to 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.

An essential resource for parents (and teachers): Educating the Child With Cancer, A Guide for Parents and Teachers, edited by Nancy Keene. 2003. A fantastic and complete resource, written by top researchers in the childhood cancer education field; parent's personal experiences are also included. Find this book through the link below:

Help from the pros: Parents' back to school comments

Parents talk about their experiences when their child returned to school during or after treatment for cancer. Their comments include many useful suggestions.

IEPs

Childhood cancer patients (and survivors) may have physical or mental disabilities because of their treatment. Accordingly, these patients have certain legal rights in the public education system. The U.S. government guarantees an education plan designed specifically for your child, called an Individual Education Plan or IEP. Your child's rights, how to obtain an IEP, and ideas on what to include in the IEP are discussed in the following Ped-Onc page:

Cognitive Late Effects of Childhood Cancer

This section is directed to parents of children whose children are off-treatment and experiencing late cognitive effects of chemotherapy and radiation treatment. See the ped-onc page:

Back to School Letters

During cancer treatment, children are often neutropenic and thus less able to fight off infections. When they return to school, exposure to common childhood disease such as chicken pox is often a worry for parents. Some parents send a letter to the parents of all the children in the child's class to explain the situation. The following are several such letters, ready-to-print.

The Chicken Pox Letter

Kindly contributed by Mark "known for fun" Schumann, The Chicken Pox Letter on this ped-onc site is a must for children returning to social and educational activities. Feel free to use it at your child's school.

The Chicken Pox Letter in a browser window.
Chicken Pox letter in MS Word format.
Chicken pox letter, ALL-specific in MS Word format
Spanish version of the ALL-specific letter in MS Word format

General Back to School Letter

This is a great letter on the Squirrel Tales site. It includes chicken pox as well as other childhood sicknesses. You can download the letter in MS Word and fill in the blanks to make it specific for your child.

Squirrel Tales back to school letter.

Relevant articles on this and other web sites

Trish Greene Back to School Program

The Trish Greene Back to School program on the Leukemia and Lymphoma web site. Also on the same web site:

Childhood Cancer and School

A fact sheet on the Onconurse site adapted from Childhood Cancer: A Parent's Guide to Solid Tumor Cancers, by Honna Janes-Hodder and Nancy Keene.

Children With Cancer

A paper written by Sarah McDougal, a student at Indiana University. Sarah joined the Ped Onc mailing list for a while to confer with parents of children with cancer about the psychological aspects of childhood cancer survivorship and reintegration into school and normal society. (This article is on this ped-onc site.)

Leukemia Education Series

On the Leukemia and Lymphoma web site, information on education for cancer kids returning to school.

Coping with Isolation: A Case Study of an Elementary School Student with Cancer (full text)

A paper by Brian C. Ante, NY City Public Schools. Abstract:

In this article, Brian Ante describes the education of a child diagnosed with neuroblastoma. Factors relating to educational services provided, physical effects of treatment, and socioemotional state are explored over the nearly six year progression of this cancer. The author suggests that the persistent good will of providers and the community, more than an educational plan, ensured a sound education for the child, given the uncertainty of the medical treatment and side effects; and that additional peer interaction would ameliorate depression during periods of isolation due to treatment or neutropenic status (low white blood cell count). (This article is on this ped-onc site.)

Fostering a positive school environment for students with cancer

Journal Article: by Hoida, J.A., & McDougal, S.E. (1998). Fostering a positive school environment for students with cancer: The role of the principal. National Association of Secondary School Principals Bulletin, Vol. 82 (no. 601), 59-72. This paper is excellent reading for the school personnel when your child returns to school. The journal can be found in education libraries of universities. (E-mail the editor if you have trouble finding a copy.)

Abstract: What are the different types of childhood cancer and their treatments? What are the physical, academic, and emotional effects of cancer? What strategies might principals use to work with students with cancer? The information in this article should help principals be better prepared to work with students with cancer, and with their parents, teachers, and other school personnel to make the school environment as supportive as possible.

Relevant (comprehensive) web sites

Band-aides and Blackboards

This is a web site designed to help children and adults understand what it's like to grow up with a serious medical problem. Kids around the world who are doing just that wrote their stories, poems and comments about the nature of their worlds. The stories are poignant, varied, and speak of the stigma that so many of them experience. In addition to the narratives, the site contains a hospital tour (with hospitalized children as the tour guides), strategies of inclusion, hints from the children to teachers, nurses and doctors, pages about teasing, and many more interactive activities. The site is divided into sections for children, teens and adults.

Relevant books/videos

Bibliography

A bibliography of journal articles on neurocognitive function after cancer treatment in kids. This can be a good list to have when dealing with the bureaucracy in setting up an IEP. Nancy Keene sent me this list in August 2000. It's not typed into a browser window, it's scanned in, so you have to load in each page one at a time.

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General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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