Childhood Brain and Spinal Cord Tumors
Notifying friends and neighbors
The easiest way to notify friends and neighbors is to delegate one person to do the job. Calling only one neighbor or close friend prevents you from having numerous tearful conversations. Most parents are at their child’s bedside and want to avoid more emotional upheaval, especially in front of their child. Parents need to recognize that friends’ emotions will mirror their own: shock, fear, worry, helplessness. Because most friends want to help but don’t know what to do or say, they will welcome any suggestions you can give about what might be helpful.
Tell a trusted friend exactly what information you want him or her to pass on and, most importantly, whether you would welcome visits, phone calls, or cards. The more clarity you can provide, the less stress you will experience and the better your friends can support you. If you want visitors, for example, let people know when visiting hours are and whether there are any restrictions set by the hospital (or by you or your child) about who can come and for how long.
There were many days I wanted to hide in bed and pull the covers over my head. I know everyone was well meaning and genuinely cared, but the constant stream of people through the house and phone ringing added to the stress we were already under. We already had a home care nurse coming 5 days a week, a physical therapist coming 3 days a week, in addition to constant phone calls to follow up on blood work and tests, appointments to schedule, and family members to keep track of. Bubba, our dog, loved all the commotion, but the rest of us tired quickly.
Not everyone you know will want or need the same level of detailed information. You may wish to encourage visits from close acquaintances but ask others to wait for phone or email updates. However, think twice before leaving anyone off the notification list. Many parents report that individuals they barely knew ended up being some of their most helpful and supportive resources.
Many families set up phone trees to provide ongoing updates—the parent calls one person, who calls a designated group of people, who then call others. More information about this topic is available in Chapter 16, Family and Friends.
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