Childhood Brain and Spinal Cord Tumors
Brain tumor conferences
Most of the major brain tumor organizations offer annual or biannual multi-day conferences for patients and families, and it may be worthwhile to attend one. These conferences often bring to one location a number of experts in brain tumor research, neurosurgery, and neuro-oncology, as well as present panel discussions by specialists, caregivers, and long-term survivors. They offer an opportunity to gather information, network with other families, and find hope.
Many pediatric cancer facilities and organizations also sponsor workshops, teleconferences, and web-based presentations about topics such as long-term effects of treatment, school issues, and updates about brain tumor treatments.
I would like to share my thoughts on the very first brain tumor conference that my family attended. The connection began with the people: I reached out to others for feedback, asked for information and embraced the intellect, experience, wisdom, and courage of friends. I left the conference knowing that it is okay to continue to dream, and although we showed our hurt, and cried, we learned we need to search, and try. We smiled too: for every tear, every pain and suffering, we united and became electrified.
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