Children spend a lot of time becoming more independent as they grow up. But they lose this independence when they undergo a blood and marrow transplant (BMT). This might make them feel angry or depressed. They may have trouble getting used to new rules and new people telling them what to do. Your child may feel overwhelmed with all the tests, medications, and daily medical procedures.
They might express their loss of personal control through:
- anger
- refusing to co-operate with parents or the health care team
- crying for no apparent reason, and being unable to explain what is making them sad
- refusing to eat and play
- depression
- babyish behaviour
How can you help your child cope?
Your child may not understand the urgency of a medical procedure as you do. Let them know that you understand it is difficult, and that feeling angry is normal and okay.
Children want to protect their bodies and have control over their personal lives as much as adults. Give them the opportunity to make choices about their daily activities and care, and try to honor their decision whenever possible.
Your child may be scared and feel helpless. Although all of these negative thoughts are normal, you can help them cope by saying positive words of encouragement. Remind your child of the things they can still do to help them stay less focused on the activities they cannot do. Encourage even small accomplishments, and try to help your child find the positive in each experience.
For instance, if your child is feeling restless and discouraged because treatment seems to be progressing slowly, remind them that they have already successfully made it through several days. Temporary setbacks are normal, and when they happen, remind your child that they are not a cause of alarm.
Eating and drinking problems
As part of their treatment, your child will have to take many medicines. Many children find it difficult trying to swallow larger pills. The child life specialist will help you use different strategies to make it easier for your child to take medicines. For example, your child can practice swallowing different sizes of candy. This way, they can get used to swallowing larger pills.
Maintaining routine
As a transplant patient, your child will spend a lot of time in the hospital. It is important to maintain as much of your child’s home routine as possible. Maintaining a daily routine will bring a sense of normalcy to your child and help them get used to the hospital room being their temporary home.
Engaging in activities
If you can, try to create some ‘safe’ time for your child in the day, where they have no tests, medications, or dealings with medical staff. For example, you can make a tent, where your child can play and have some time alone for themselves.
Boredom can be a big issue for children. Helping plan activities for teens is particularly important, since they may not relate to some of the activities at a children’s hospital that may be more aimed at younger kids.
Here is what you can help keep your child busy:
- Arrange calls from your child’s classmates, favorite teacher, or a hometown doctor who they feel comfortable with.
- Make videos of the family and friends that your child can watch while in the hospital.
- Encourage them to paint and draw. They can hang their paintings up on the wall to decorate their room.
- Tape-record a letter your child can send to their class at school, their friends or siblings.
- Start a scrapbook or photo album.
- Create a ‘cheer-up’ chart – write down one good thing that happens each day
- Start a diary or journal.
How can you help your child cope with pain?
Try to learn non-drug techniques to cope with pain before it becomes difficult to tolerate. Many hospitals offer classes that teach relaxation and imagery skills or trained therapists that can help. While these techniques will not cure the pain itself, they are a great way to make your child’s healing process less difficult to endure.
Distraction
While recovering from their transplant, your child may often be groggy, and have a shorter attention span while taking medicines. They may not be able to participate in some of their more favourite activities or hobbies.
Storytelling can be a way to distract your child from the pain or discomfort they may be feeling. Let your child tell the story with you as well. Engage your child in art activities, such as drawing and painting.
Relaxing techniques
Relaxation techniques involve exercises that focus on breathing or muscle tensing and relaxing. It can help reduce anxiety and pain. While relaxing, tell your child to focus on a place that makes them happy or feel safe. This can create a deep sense of calm and ease in your child. Practice at least two times a day for five to ten minutes.
Physical stimulation
Some ways you can help your child minimize the pain they feel is by:
- applying heat or cold to painful areas. Ice packs should not be used for six months on skin that has been irradiated
- massaging the area that is painful
- exercising. This can include simple stretches in the bed.