Childhood Leukemia
The Room
Because kids on chemotherapy are at increased risk of infection, many hospitals give them private rooms. This means more space for the child, the parents, and visitors; it also means much more freedom to personalize and decorate the room. Covering the walls with big, bright posters of interest to your child can brighten up the room immensely.
The first thing we put up in Meagan’s room was a huge poster of The Little Engine That Could saying, “I think I can, I think I can.”
Cards can be displayed on the walls, hanging from strings like a mobile, or taped around the windowsills. You can display pictures of your child engaged in her favorite activities and add photos of her friends. Most hospitals do not allow flowers on oncology floors because they can grow a fungus that can make children sick; but it’s fun to have bouquets of plastic balloons bobbing in the corners (children’s hospitals do not allow latex balloons). Younger children may be greatly comforted by having a favorite stuffed animal, blanket, or quilt on their bed. If your child likes certain scents, you can make the room smell good with aromatherapy oils.
I bought a travel bag on wheels. It is so much easier than trying to carry several handle bags when Zach is admitted. It has several pockets to carry stuff. I love it and wished I had done it two years ago when we started this! I take these things to the hospital: flavored creamer for my coffee (a little treat for me); a book for us to read together so I don’t go crazy from Cartoon Network (we are reading the Narnia series, and Zach begs me to read to him. I snuggle up with him in his bed while we read); his favorite pillow from home; little airplanes and parachuters to drop from the third floor at night when the lobby is empty (if he’s feeling well enough); my thermometer so I can check his temp any time I want to; lots of Legos®; phone numbers of friends; canned ravioli; toaster strudels; audio books (Adventures in Odyssey®); and music DVDs with earphones.
To personalize visits, some parents bring a guestbook for people to sign. Others put up a medical staff sign-in poster, which must be signed before examinations begin or vital signs are taken. Another variation of the sign-in poster is to have each staff member or visitor outline his or her hand and write his or her name within the handprint. Children can use a digital camera or smartphone to take pictures of the many staff members who come into the room.
In my position as a parent consultant, I suggest that a journal (possible titles are Book of Hope, Book of Sharing, My Cancer Experience, and Friends Indeed) be kept in the child’s room for any visitor, family member, or medical caregiver to write in at any time. Leaving a message if the child is sleeping or out of the room for procedures can be a nice surprise. Later, a surviving child and her family, or the family of a child who has died, have a memory book of those who have touched their lives.
Bringing music and a portable music player with small speakers will help block out some of the hospital noise and can help everyone relax. A portable sound machine that has relaxing sounds such as ocean waves, falling rain, or white noise can be played while the child sleeps. An iPod® or other portable audio device with headphones and the child’s favorite music or audio books can also make the time pass more quickly.
My daughter’s preschool teacher sent a care package. She made a felt board with dozens of cutout characters and designs that provided hours of quiet entertainment. She also included games, drawings from each classmate, coloring books, markers, get well cards, and a child’s tape player with earphones. Because we had run out of our house with just the clothes on our backs, all of these toys were very, very welcome.
Many children’s hospitals have in-room or portable DVD players available. You can check out DVDs from the hospital media library or bring a favorite funny movie or DVD of a television show. Humor helps, so joke books and things that make kids laugh (such as Silly String®) are great items to pack. Most hospitals have Wi-Fi, so children and teens can use social media, play games online, and stream movies and television shows.
A friend brought in a bag from the local dollar store. He included a water pistol, Play-Doh®, a Slinky®, checkers, dominos, bubbles, a book of corny jokes, and puzzles.
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