Childhood Brain and Spinal Cord Tumors
The terminally ill child and school
In the sad event that a 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 the child’s final days. Students need timely information about their ill classmate so they can deal with his declining health and prepare for his death. The possibility of death from a brain or spinal cord tumor should have been sensitively raised in the initial class presentation before the child’s return to school, but additional information is needed as the child’s health declines. 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 will not suddenly occur at school; rather, the child will either die at home or in the hospital.
- Staff needs to be aware that going to school is vital to a sick 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 reading materials about death and dying for the ill child’s classmates, siblings’ classmates, teachers, and school staff.
- Extraordinary efforts should be made to keep in touch when the child can no longer attend school. Cards, banners, tapes, texts, emails, telephone calls, and webcam or conference calls (e.g., on the principal’s speaker phone) 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 to entertain 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 and concern in classmates, as well as help them adjust to the decline and imminent death of their friend. The activities also help the sick child know she has not been forgotten by her teachers, friends, and classmates, even if she 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 or poems about their child from classmates. Scholastic® has a webpage with many excellent suggestions for classmates to remember their friend at www.scholastic.com/browse/article.jsp?id=3754883.
As I sit here, almost 18 years since Matt’s diagnosis, helping him learn the home row on the computer keyboard, I can’t help but feel gratitude and pain, all at the same time.
Matt took 3 years of computer classes in high school and can scoot his way around a Word® document and the Internet like no one’s business, and he is presently taking a keyboarding class at the community college. I thought it would be a walk in the park. I didn’t realize getting his fingers to relax and curl so they could stay positioned on the home row would be so difficult, but he’s making amazing progress. I forgot the real meaning of practice.
He has always wanted to go to college, but he is quite limited academically. I am so grateful that there are some courses he can take, as difficult as they are for him. I often reflect on the many teachers and assistants who have worked with him over the school years. Their patience, their energy, their creativity, their passion, their time, their love, and above all, their wisdom to know that everything they invested in my son is so well worth it.
Table of Contents
All Guides- Introduction
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites