Childhood Brain and Spinal Cord Tumors
Emotional responses
PBSCT can take a heavy emotional toll on the child, the siblings, and the parents. It can be a physically and mentally grueling procedure, with the possibility of months or years of late effects. Most transplant team members are extensively trained to meet the needs of the child and family during the transplant itself and the convalescence that follows. The team usually includes doctors, nurses, social workers, educators, nutritionists, and physical, occupational, speech, and child-life therapists.
Levi’s transplant experience was like watching someone wake up from a deep sleep. For 2 weeks he was flat on his back, suffering greatly from mucositis and a tummy bug that caused diarrhea for days straight. It was a real horror. Then one evening he sat up and said, “What’s all that stuff?” He was referring to all the gifts that had piled up in the corner of his room. He opened every toy, got down on the floor, and drew pictures of all the foods he was craving, and he never looked back. It was like an instant transformation. I think my own recovery was longer. I believe part of me froze in order to survive the transplant, and it took a long time to thaw.
What helped me the most were the decorations and having a positive attitude. My mom decorated the area outside the transplant room with balloons, cards, and posters. It was hard to take the medicine, so my mom made a huge poster to mark off how well I did. Every time I took my medicine, I got a sticker. When I got one hundred stickers, I got some roller blades.
Often so much time and energy is focused on the child who needs the transplant that the needs of the siblings are overlooked. Siblings need careful preparation for what is about to occur, and all their questions should be answered and their concerns addressed. For more information about siblings, read Chapter 15, Siblings.
Organizations that offer emotional support to families during the transplant are listed in Appendix B, Resource Organizations.
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