When your child enters the hospital for a bone marrow or cord blood transplant (also called a BMT), he or she faces an unfamiliar world. Your child may be in the hospital for weeks or months. There are many things you can do to help your child cope with his or her stay in the hospital.
Helping your child prepare
Before your child enters the hospital, talk about what to expect of the hospital stay. A hospital tour can be helpful. Your child may ask many questions.
For a printable resource of common questions and some suggested answers, see Questions about the hospital stay (PDF).
Watch Super Sam versus the Marrow Monsters. This award-winning movie for pediatric transplant patients is a great resource that can help your child understand the transplant journey and what to expect at the hospital.
Download the Super Sam activity and information sheets to help your child express their feelings and ask questions.
Bringing your child's world into the hospital room
As you plan for your child's hospital stay, think of ways to bring your child's world of family, activity and learning into the hospital. You can help your child:
A hopeful environment
You and your child can decorate the hospital room. You may want to have a theme or find other ways for your child to express his or her creativity and personality. Check hospital rules for things you cannot bring, such as live plants, flowers or latex balloons.
Be sure to bring things from home that are familiar and comforting. Ideas include:
- Pictures from home
- Loose-fitting clothes or clothes that open up in the front (pajamas, slippers, a robe)
- Sheets, pillows, a quilt, whatever makes the room more comfortable
- Activities to pass the time; things you and your child will enjoy and can do together, such as jigsaw puzzles, arts and crafts, books, videos, CDs or a computer
- A scrapbook and a camera to help you document your child's journey
- Window decorating paint that's washable to liven up the windows
- An object that gives you and your child hope, such as a symbol of faith or strength
Making a schedule
It's helpful for your child to have a routine at the hospital. Your child life specialist can help you and your child set up a schedule of daily activities and post it in the room.
- Include daily tasks, such as mouth care, bath, snack and meal times.
- Plan small things to look forward to each day.
- Try to plan a few private times for your child to call family or friends. Ask your child's health care team to respect private times if possible.
- Think about ways to make family traditions or faith practices part of your child's routine.
- Plan ways to mark milestones, holidays or special events in the hospital.
- Plan a schedule for family and friends who can visit.
Dealing with challenges
During the hospital stay, your child will have opportunities to learn as well as challenges to face.
Playing a role in treatment
In the hospital, there will be many things your child cannot control each day. Playing even a small role in his or her own treatment can give your child a feeling of having some control. Encourage your child to be involved in treatment as much as he or she is able. A young child may be able to hold the thermometer in place. A teenager may be able to help care for his or her own central line. Give your child choices whenever you can.
Coping with isolation
In the hospital, your child may be cut off from family, friends and the usual activities of home. While your child is at the highest risk of infection, he or she may be restricted to his or her room. There will also be rules about who can visit — check with your transplant center for guidelines. Using phone calls, e-mail and other methods to stay in touch with family and friends can help. In addition, the child life specialist may have creative ideas for activities your child can do in his or her room. When your child can leave the room, he or she may meet other children in the hospital. It can help to talk to someone sharing a similar experience.
Talking about feelings
Your child may feel tired and sick. Some children feel angry or sad or fearful or have a hard time cooperating with treatment. Adjusting medications can sometimes help. Talking about feelings can help. You can acknowledge your child's feelings and comfort him or her. Pictures or stories may be useful for talking with a younger child. Download Share your Feelings and Your Questions to help your child.
Managing pain and side effects
In the first weeks after transplant, your child may have side effects from the transplant preparative regimen. Some possible side effects, such as mouth sores, can be painful. Your child's health care team will pay close attention to your child's comfort and give your child medicine to manage any pain. Some children may not report pain or do not have the words to say how they feel. Your child's health care team has tools to assess children's pain and side effects from treatment. You know your child best and can help alert the health care team if your child shows signs of discomfort so it can be treated.
Using complementary therapies
Planning time out of bed for play, exercise or activities can aid healing and improve your child's outlook. The hospital may offer complementary therapies such as relaxation, guided imagery, massage, aromatherapy or music therapy. For some children, these therapies reduce pain and anxiety and help them cope with unpleasant procedures.
K. Scott Baker, M.D., Director, Pediatric Blood and Marrow Transplantation and Survivorship Programs, Fred Hutchinson Cancer Research Center, Seattle, Wash.Nancy J. Bunin, M.D., Director, Blood and Marrow Transplantation, Children’s Hospital of Philadelphia, Philadelphia, Pa.Eva C. Guinan, M.D., Associate Professor of Pediatrics, Harvard Medical School, Dana-Farber/Children’s Hospital, Boston, Mass.
Mary Jo Kupst, Ph.D., Professor of Pediatrics, Medical College of Wisconsin; Director, Program in Pediatric Psychology, Milwaukee, Wis.