Whether your child is dying at home or in the hospital, siblings should be included in the family response. Being part of things and having jobs to do help brothers and sisters remain involved, contributing members of the family. Young children can answer the door or choose music to play for the sibling. Older children can help with meals, stay with the ill child to give parents a break, answer the phone, or help make funeral arrangements. These jobs should not be “make-work”—children should truly be helping. This helps them to prepare for the death, as well as have a chance to say good-bye.
We gave our children free rein to pick out the clothes that Jesse would be buried in. They made very thoughtful choices: her favorite, very comfortable pajamas with little tea cups on them, and her teddy bear.
For teens, the presence of their siblings and friends can be very significant in the final weeks.
When Megan first came home after her last hospital stay to manage the pain, she stayed on the couch and her twin sister slept on an air mattress next to her. We carried her upstairs to her bed in their shared room in a wheelchair. She lasted two nights in her own bed, then she needed a hospital bed. The pain pump worked well most of the time, but we had to work with hospice and her pain management team to get the right level of pain control. Her older brother in Florida took off a couple of months to come home and be with her before she died. Her friends were great with her, spending a lot of time at the house. They put her makeup on her and did her hair two days before she became unconscious.
Megan worried about how her twin sister, Melissa, would cope without her. While she could still speak, Megan asked me, “For our first birthday that we’re not together, will you give her this ‘fearless’ bracelet?” It was a leather band with metal letters spelling out fearless. “Tell her she was the fearless one.” I framed it and gave it to Melissa with a card saying exactly what Megan asked her mom to share with her twin. She’s studying in Rome at the moment and it’s one of the few things she took with her.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Overview of Childhood Leukemia
- 3. Acute Lymphoblastic Leukemia
- 4. Acute Myeloid Leukemia
- 5. Juvenile Myelomonocytic Leukemia
- 6. Chronic Myelogenous Leukemia
- 7. Telling Your Child and Others
- 8. Choosing a Treatment
- 9. Coping with Procedures
- 10. Forming a Partnership with the Medical Team
- 11. Hospitalization
- 12. Central Venous Catheters
- 13. Chemotherapy and Other Medications
- 14. Common Side Effects of Treatment
- 15. Radiation Therapy
- 16. Stem Cell Transplantation
- 17. Siblings
- 18. Family and Friends
- 19. Communication and Behavior
- 20. School
- 21. Sources of Support
- 22. Nutrition
- 23. Insurance, Record-keeping, and Financial Assistance
- 24. End of Treatment and Beyond
- 25. Relapse
- 26. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups