When your child has a bone marrow or cord blood transplant (also called a BMT), he or she may be in the hospital for weeks or months. There will be hard days, but the experience can also be an opportunity for your child to learn and grow and be proud of how well he or she handles a difficult time.
When your child is in the hospital, it can be tempting to relax your usual expectations of how he or she will behave. However, setting clear expectations for behavior sends your child the message that you expect him or her to get well and lead a normal life.
At the same time, you may need to change some of your expectations during treatment. It is normal for a child who feels sick to regress, or return to earlier behaviors. For example, a young child who was toilet trained may need diapers again. Your child will depend on you for comfort. Your child also depends on you to tell him or her what behavior you expect and what is off limits. For example, your child may not be able to clean up after an activity as he or she would at home but can still say "please" and "thank you."
It is also important to set reasonable expectations for yourself as caregiver. Do not expect to do it all alone. Remember that you need to take care of yourself
. When you give yourself breaks and ask for help, you will have more energy. You will be better able to convey a feeling of calm and hopefulness to your child.
Give your child choices whenever you can. There will be many things your child cannot control each day. But there are some choices you can offer, such as "Would you like to take your medicine now or in 10 minutes?" Your child can help schedule his or her day. He or she can choose the music to listen to, some of the foods to eat or the games to play. Choices help give your child some feeling of control as well as a chance to develop independence.
Supporting activity and learning
Play is how younger children learn about the world, explore feelings, develop skills and have fun. Older children accomplish some of the same goals through their activities and hobbies. You can bring toys, games and supplies for projects and activities your child enjoys. Your child can do activities that develop skills appropriate to his or her age, just as he or she might do at home. For school-age children, doing schoolwork and staying in touch with classmates is important.
Therapeutic play and activity
Your hospital may have a child life specialist or play therapist who can work with your child. A child life specialist or play therapist can use activities to help your child understand and cope with treatment. Depending on your child's age and interest, activities could include:
- Playing with toys, including special dolls used to show medical procedures
- Playing a variety of games, including video games
- Drawing or painting
- Writing journal entries, poems, stories or songs
- Listening to or making music
Through these and other activities, a child life specialist can help your child:
- Express concerns and ask questions.
- Prepare for medical procedures — Rehearsing procedures with a special doll or safe medical equipment can make treatment less frightening.
- Distract himself or herself from medical procedures, pain or discomfort — For example, playing a video game or listening to music during a procedure may help a child deal with discomfort better than medicine can.
- Make choices and achieve goals.
- Have fun and relieve stress.
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.