Children need to play, especially when hospitalized. The hospital might have a recreation therapy or child life department that has toys, books, dolls, and crafts, and is staffed by specialists who really know how to play with children. These staff members also provide many therapeutic activities, such as medical play with dolls, which helps children express fears or concerns about what is happening to them. By encouraging contact with other children in similar circumstances, recreation therapy helps children feel less alone and less different from other children.
The fun-filled activities and smiling staff people in the recreation therapy rooms are a cheerful change from lying in a hospital bed. If your child is too ill or if her counts are too low to go to the play area, arrangements can be made for a recreational therapist to bring a bundle of toys, games, and books to the room. Music therapists may also come to the bedside. This can give the parent time to go out to eat or take a walk.
When I wanted to have a conference with the oncologist about Katy’s protocol, I called recreation therapy and they sent two wonderful ladies to the clinic. The doctor and I were able to talk privately for an hour, and Katy had a great time making herself a gold crown and decorating her wheelchair with streamers and jewels.
Exercise is important, too. For kids strong enough to walk, exploring the hospital can be fun. Even if they can’t walk, you can wheel them around or pull them in a wagon if they feel up to it. (This is also a great workout for you.) Plan a daily excursion to the gift shop or the cafeteria. Go outside and walk the entire perimeter of the hospital if weather and the neighborhood permit. Don’t feel limited by an IV pole; it can be pushed or pulled and will feel normal after a while. Many children stand on the base of the IV pole with a parent pushing them down the hall at a good clip. Physical and occupational therapists can help your child incorporate exercise into the daily routine.
Tori was in the hospital recently for fever and positive blood cultures. She has a great time in the hospital. I had been trying to get her out on a pass as she was to have Grandparent’s Day at school. We only would have been gone for a couple hours but no go. We came up with a plan to videotape the school part and have her do it with the tape for her grandparents at the hospital. In addition, child life got another videotape and we made a video for the school about the hospital at the same time. She was able to go all over the hospital (the play room, PT and OT gym, McDonalds®). It was great and I think I am going to treasure the copy.
Tori and I also went reverse trick or treating. She had wanted to do it Halloween week but we were not in clinic. We were inpatient, but I had promised, so we did it anyway. I brought in her witch costume and she ran around the hospital giving out candy to her therapists, nurses, and doctors. It was fabulous. She looked so cute. People in the halls did think it was a little weird but everyone from oncology understood that you do what makes you happy. Just call November 16th Halloween and everyone just pretends it is.
Any action that parents, family members, and friends take to support and advocate for the child with cancer buoys the spirit. Courage is contagious.
It becomes second nature. Step, shuffle, shuffle. Step, shuffle, shuffle. Sometime between two and five o’clock in the morning—somewhere between the nurse’s station and the bathrooms—your gait, pulse, and breath synchronize into a rhythm of surprising calm. Step, shuffle, shuffle.
The Walk. That’s what we call it. It’s a milestone of sorts. A sign of acceptance and perseverance. A notice to the rest of the Club that you have put in sufficient hours of hospital vigil to find solace in simple movement. Hurried paces, strident races to the pay phones are far behind you. Tearful staggers and despairing stumbles are also long gone. Long stretches of hospital hallway lay before you, endless miles to be traversed while waiting and watching. Step, shuffle, shuffle: the comforting drag of the bottom of your feet against industrial linoleum.
I round the corner and modify my slide to catch up with the woman in front of me. “Hey, Susan.”
“Hey, Gigi.” Her Walk is smooth and practiced. I suspect it follows her home. We move down the corridor together, clutching empty water pitchers, cutting a path through beeps, moans, and rustles that issue from the doors on each side. Each of us is only partly in the space our body inhabits—our essential selves are back in our assigned rooms watching over little boys in huddled sleep.
“Shunt infection, I.V. antibiotics, you know.”
I nod. My son has a shunt, too. It drains excess fluid from the brain.
“Heparin for the clot in his leg,” she continues. “Feeding tube still in. And they want to increase the steroids.” Too many complications for such a little guy. My heart gets tight and I am fervently glad not to be Susan. An instant later, I am ashamed of my thoughts and blurt out some hopeful babble. “But he’s sleeping okay?”
Susan raises her eyes to mine. The Look is there, much more developed than mine—she’s had 4 months longer to perfect it. It is calm (with a dead-hold over hysteria), it is knowledgeable (endless hours of research masterfully synthesized and assimilated), it is forgiving (of COURSE you don’t want to be me). Look to Look, my shame fades away. She smiles and squeezes my arm. “Yeah. He’s sleeping okay.”
We stop briefly in front of the water dispenser and then head back the way we came. The tan plastic pitchers sweat coldness over our hands, but we don’t hurry. That’s one thing about the Walk. It buys you time—alone time, out-of-the-room time. A chance to look at something other than the disease that is breaking your heart.
“And Ben?” she asks as we reach my corridor.
“Pretty good. This chemo cycle doesn’t seem as rough on him.”
“Great!” She means it. Good news for anyone in the Club is good news for all of us. Small victories add up.
I veer off to the left. “See ya.”
“See ya,” she calls back. Step, shuffle, shuffle. Step, shuffle, shuffle. Our feet take us quietly back to battle.
Table of ContentsAll Guides
- 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