A child’s death at home, and the time just before, can be a peaceful experience, depending on the extent of preparation and the quality of support available to the family.
It was scary to be taking Caitlin home to die, but she was so happy to be there. Her brother was 14 years old, six-foot-three, and he carried her everywhere she wanted to go. We let her be in charge; whomever she wanted to see would be allowed in. My parents bought her a television and a VCR, each with remotes. She’d sit in bed with a remote in each hand, glad not to have to compete with her brothers, and say, “I got the power.”
The night of her death her vomiting was too bad for us to stay at home. We brought her to the hospital in our car; we fixed a bed for her in the back with me and her aunt on the floor and her dad driving. She was taken directly to the pediatric floor, where they started an IV and gave her something to stop the vomiting. My husband and I were in such denial that we had packed enough for at least a 2-week stay. No one on the staff had told us that her death was very near.
Ten days after her death we had to return to the pediatric floor with our son, and one of the doctors asked me if I had known Caitlin was dying when we came in with her. I said, “No, did you?” He replied, “Yes, because her breathing had changed.” This new information hurt me deeply. It would have been good to have been told that her death was near and been given some choices about how we would like to handle it. I truly believe this could have been done quickly and as gently as all of her care had been given. I would like to have had the chance to hold Caitlin in my arms as she left our world, cradling her as closely as possible for the last time. Instead, I was hanging over the railing, holding her hand.
We decided to bring Jody home to die for several reasons. First of all, the medical profession was offering no more realistic hope. Secondly, Jody was young enough and small enough to be easily held, carried, and cared for by us. Thirdly, nothing violent or terrifying happened at home, which made us seriously debate whether to go back in the hospital with him.
I saw many life values in a new way from the experience of Jody dying at home. What comes to my mind is a sunny, breezy afternoon, September 13. Only Jody and I were home. I held him outside under the plum tree for perhaps an hour and a half or longer. I couldn’t support him well and read to him at the same time, so we didn’t do anything. I spoke to him some, but mostly just held him quietly. I was aware as I looked up into the sky that my normal reaction on such a day would be to want to be hiking, biking, “doing” something. A surprise recognition burst and spread gently through my consciousness: I was exactly where I wanted to be and no doing of anything could mean as much as being there with Jody.
Jody’s last day, September 16, was peaceful. A spiritual healer, whom Jody had known for two years, came and spent time with him. A massage therapist/healer/friend, who had visited him several times during the five weeks he was home, gave him a long, gentle massage. My husband, Tom, stayed home from teaching that day (by chance?). Jody lay in his arms or on my lap most of the day. The visiting home nurse came by briefly and offered to stay, but we preferred to be alone. I was holding Jody; Tom was next to me holding his feet. Jody’s breathing became labored and irregular. His eyes were unblinking long before he took his last breath, then a heartbeat, then another, then silence.
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