After a school-aged child is diagnosed with a brain or spinal cord tumor, she is usually rushed to a children’s hospital (sometimes far from home) and is no longer able to attend school. To prevent your child from being dropped from school rolls due to non-attendance, you need to notify the school in writing about your child’s medical situation. This notification allows planning to begin for your child to receive home-based schooling once he is able to resume his studies. Following is a sample letter, reprinted with permission from Sharon Grandinette, Exceptional Education Services.
Dear [Name of Principal],
Our son, John Doe [date of birth], a student at [name of school], was diagnosed with a brain tumor in [month] and had surgery to remove the tumor. He is still hospitalized. He is unable to attend school at this time, and may undergo treatment with chemotherapy or radiation.
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 John’s current medical status and how it may impact his school attendance and functioning. John may require school interventions or special education services, and we would like to discuss those options at the meeting. Depending on John’s 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 may authorize an exchange of information between the school and the medical/rehabilitation professionals treating John.
Because treatments for brain and spinal cord tumors (e.g., surgery, chemotherapy, radiation, and stem cell transplantation) cause changes in children’s behavior and ability to function in school, both during and after treatment, the study team meeting can lay the foundation for any needed accommodations or interventions.
At the meeting, you may wish to distribute booklets about how to help children with brain and spinal cord tumors in the classroom, as well as age-appropriate information that can be shared with the classmates. You can formulate a communicable disease notification strategy, if necessary, and do your best to establish a rapport with the entire school staff. Take this opportunity to express appreciation for the school’s help and your hopes for a close collaboration in the future to create a supportive climate for your child.
At the meeting, the school will designate a person (e.g., child’s teacher, guidance counselor, special education expert) to communicate with a designated person at the hospital (e.g., school liaison, child life specialist, social worker). To read about how St. Jude Children’s Research Hospital manages this process, visit www.stjude.org and enter the search term “School program.”
I still feel unbelievable gratitude when I think of the school principal and my daughter’s kindergarten teacher that first year. The principal’s eyes filled with tears when I told her what was happening, and she said, “You tell us what you need and I’ll move the earth to get it for you.” She hand-picked a wonderful teacher for her, made sure that an illness notification plan was in place, and kept in touch with me for feedback. She recently retired, and I sent her a glowing letter, which I copied to the school superintendent and school board. Words can’t express how wonderful they were.
The designated liaisons will work to keep information flowing between the hospital and school and will help pave the way for a successful school reentry for your child. The liaison from the hospital should encourage questions and address any concerns the school staff have about having a seriously ill child in the school. Privacy laws prohibit liaisons from communicating unless parents sign a release form authorizing the school and hospital to share information. These forms are available at schools and hospitals.
In the months and years that follow, maintaining an open and amicable relationship with the school will ensure that your child, who may be emotionally or physically fragile, continues to be welcomed and nurtured at school.
Table of ContentsAll Guides
- 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