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.”
We were away from home for surgery, and I wanted to be sure to have lots of family pictures around for Anthony to see when he woke up. We covered the walls with them.
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 activity, and add photos of her friends. Most hospitals don’t allow flowers on oncology floors because they can grow a fungus that can make children sick; but it’s fun to have bouquets of balloons bobbing in the corners. Younger children derive great comfort from having a favorite stuffed animal, blanket, or quilt on their bed. If your child likes certain scents, make the room smell good with potpourri or aromatherapy oils.
I went and 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 2 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 anytime I want to; lots of Legos®; phone numbers of friends; canned ravioli; toaster strudels; story tapes (Adventures in Odyssey®); and music CDs 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. If your budget allows, a digital camera can help identify the many staff members involved in your child’s care and can provide a fun activity for your child.
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.
Some children who have undergone surgery for a brain or spinal cord tumor have difficulty communicating for a period of time after surgery. If your child loses the ability to speak, you can request and use a communication board (a felt or plastic board with pictures and movable figures) until his speech is more understandable. During that time it is important to let your child know that you understand that he sees and understands all communication around him although his ability to acknowledge that is not present. As your child recovers, the ability to communicate will return.
My son Alex was diagnosed with medulloblastoma when he was 6 years old. He came out of surgery speaking and then 2 days later couldn’t say a word. He was mute for about 2 months and then very slowly he could pronounce things again. His voice and his muscle movements (swallowing and coughing) were okay, but he just couldn’t say anything. All he would do is shake his head for yes and no or he would cry. It was so frustrating for him. He couldn’t laugh. He would just stare into space. You know what brought him around, the show “America’s Funniest Home Videos”! He had such a belly laugh and after that he started saying words again. My husband and I would practice words with Alex after he made an effort to talk, and before that we just had a system where he would squeeze our hands for yes or no. We also used flashcards for “hungry,” “bathroom,” “lights on/off,” and for different kinds of food.
Bringing music will help block out some of the hospital noise, as well as help everyone relax. An iPod® or other portable device with headphones makes 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.
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