Childhood Leukemia
The Floor
It helps to have a floor tour as soon as possible after admission. During the tour, you will find out whether a microwave and refrigerator are available, what the approved parent sleeping arrangements are, and whether showers are available for parents. You can also ask about a hospital handbook. These booklets often include information about billing, parking, discounts, and other helpful items.
Either my husband or I stayed with Delaney the entire time she was in the hospital (with AML that is not a small number of nights). To improve the comfort of the fold-out chair that the hospital provides for the sleep-in parent, we used an inflatable camping mat. When it is rolled out, it self-inflates with a one-way valve. The straps can be used to secure it to the vinyl chair. It makes the chair much more comfortable and allows your muscles to relax. When it is not in use, it can be rolled up with straps and set in the corner.
Although many hospitals provide colorful smocks for young patients, some children and teens prefer to wear their own clothing. This can pose a laundry problem, so find out whether the hospital has laundry facilities for families to use.
Our entire family stayed in the hospital for most of the six months when my 4-year-old daughter was treated for AML—me, my husband, and our three children, ages 4, 2, and 9 months. A few months in, we learned that the guest bathroom on the floor just below was much better than ours. So I’d take the baby down, strapped in a little umbrella stroller, to shower. The girls were very good about staying in the room alone—one time I came back and found a nurse playing hide and seek with them. The nurses were wonderful to us. Nurse Jesse even came in on Christmas morning to tell the kids that she saw Rudolph’s glowing nose the night before.
Table of Contents
All Guides- Introduction
- 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