Childhood Leukemia
The Terminally Ill Child and School
In the sad event that a child’s health continues to deteriorate, parents and school staff members should discuss ways the school can be supportive during the child’s final days or weeks. Fellow students need timely and appropriate information about their ill classmate so they can deal with her declining health and prepare for her death. The following are suggestions about how to prepare classmates and school personnel for the death of a student:
- The school staff needs to be reassured that death is not likely to suddenly occur at school.
- Staff needs to be aware that going to school is vital to the child’s well-being. School staff members should welcome and support the child’s need to attend school for as long as possible.
- Staff can design flexible programs for the ill student.
Jody was lucky because he went to a private school, and there were only 16 children in his class. Whenever he could come to school, they made him welcome. Because children worked at their own pace, he never had the feeling that he was getting behind in his classwork. He really felt like he belonged there. Sometimes he could only manage to stay an hour, but he loved to go. Toward the end when he was in a wheelchair, the kids would fight over whose turn it was to push him. The teacher was wonderful, and the kids really helped him and supported him until the end.
- It is helpful to provide age-appropriate reading materials about death and dying for the ill child’s classmates, siblings’ classmates, teachers, and school staff, as well as opportunities for discussion.
- Extraordinary efforts should be made to keep in touch when the child can no longer attend school. Cards, banners, videos, texts, emails, telephone calls, and webcam or conference calls from the entire class or individual classmates are good ways to share thoughts and best wishes.
- Classmates can visit the hospital or child’s home, if appropriate. If the child is too sick for visitors, the class can come wave at the front window and drop off cards or gifts.
- The class can send books, video games, or a basket of small gifts and cards to the hospital or home.
- The class can decorate the family’s front door, mailbox, and yard when the child will be returning home from the hospital.
All of the above activities encourage empathy in classmates, as well as help them adjust to the decline and imminent death of their friend. These activities also help dying children know they have not been forgotten by teachers, friends, and classmates, even if they cannot attend school.
When the child dies, a memorial service at school gives students a chance to grieve. School counselors or psychologists should be available to talk to the classmates to allow them to express their feelings. Parents usually very much appreciate receiving stories about their child from classmates.
Our 16-year-old did incredibly well psychologically during treatment. She kept up with school (tutors at home and hospital for tenth and eleventh grade). She also took the SATs and went for a college interview (bald). She wrote a research paper that blew them over at the interview. She also helped to create a multimedia project for patient information at the hospital. She was back in school for her senior year. It was a big adjustment socially. Some kids didn’t remember her; some thought she was a transfer student. She was still recovering from the side effects of chemo (lower counts, weight loss, low energy). But, she was determined to put it all behind her and made college plans. She won a full scholarship to our local university.
Date
Dear [Name of Principal],
Our child, [name of your child], [date of birth], a student at [name of school], was diagnosed with leukemia in [month/year] and is hospitalized. He is unable to attend school at this time, and will undergo treatment with chemotherapy for [length of treatment].
We are requesting that a Student Study Team meeting be scheduled with the school nurse in attendance. The purpose of the meeting is to discuss [your child’s name] current medical status and how it may affect [his/her] school attendance and functioning. [Your child’s name] may require accommodations or special education services, and we would like to discuss those options at the meeting. Depending on [your child’s name] medical status, we may be able to attend the meeting in person, but if not, we request that it take place by phone.
Please send us the appropriate release forms so that we can authorize an exchange of information between the school and the medical professionals treating [your child’s name].
Sincerely,
[Parent/guardian name(s) and contact information]
Table of Contents
All Guides- Introduction
- 1. Diagnosis
- 2. Overview of Childhood Leukemia
- 3. Acute Lymphoblastic Leukemia
- 4. Acute Myeloid Leukemia
- 5. Juvenile Myelomonocytic Leukemia
- 6. Chronic Myelogenous Leukemia
- 7. Telling Your Child and Others
- 8. Choosing a Treatment
- 9. Coping with Procedures
- 10. Forming a Partnership with the Medical Team
- 11. Hospitalization
- 12. Central Venous Catheters
- 13. Chemotherapy and Other Medications
- 14. Common Side Effects of Treatment
- 15. Radiation Therapy
- 16. Stem Cell Transplantation
- 17. Siblings
- 18. Family and Friends
- 19. Communication and Behavior
- 20. School
- 21. Sources of Support
- 22. Nutrition
- 23. Insurance, Record-keeping, and Financial Assistance
- 24. End of Treatment and Beyond
- 25. Relapse
- 26. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups