Helping your child prepare
Before your child’s hospital stay, your child and family will meet the transplant center care team. They will explain what your child can expect in the hospital. Getting a tour of the hospital and talking about what to expect before your child’s stay may help make your child feel more prepared and less anxious about going to the hospital.
Your child may have many questions about staying in the hospital. Some resources that can help you answer your child’s questions include:
- Common questions about the hospital stay and some suggested answers.
- Super Sam versus the Marrow Monsters, an animated film featuring Sam- a young boy making an epic movie production about his own transplant experience.
- Super Sam activity and information sheets to help your child express his or her feelings and questions.
Getting ready: A parent's checklist can help you prepare for your child's transplant.
Bringing your child’s world into the hospital room
Your child may be in the hospital for weeks or months. As you plan for your child’s hospital stay, think of ways to bring your child’s world of family, school and play into the hospital. For example, together you and your child can decorate the hospital room to make the room more personal. You may choose a theme or find other ways for your child to express himself or herself.
Bring things from home that are familiar and comforting such as:
- Freshly-laundered, loose-fitting clothes or clothes that open up in the front
- Bedding and/or blankets to make the room cozier
- Activities to pass the time, such as books, tablets, music or games
- A scrapbook and camera to document the journey
- Window decorating paint that’s washable to liven up the windows
- Personal items that are comforting
Be sure to check hospital rules for things you can’t bring, such as live plants, flowers or latex balloons.
Use this Super Sam activity sheet (PDF) to help your child decorate the hospital room.
Set up a schedule of daily activities
It will be helpful for your child to have a routine at the hospital. Your child life specialist can provide ideas on creating a routine while in the hospital. Some activities to include on a schedule are:
- Daily tasks, such as mouth care, bath, snack and meal times.
- Small things to look forward to each day such as a favorite cartoon or snack.
- Private times for your child to call family or friends. Ask your child’s health care team to respect private times, if possible.
- Family traditions or faith practices.
- Milestones, holidays or special events.
- Family and friends who can visit.
Adapting to challenges
During the hospital stay, there are ways your child can be involved in his/her own care and maintain independence.
Having a role in treatment
Give your child choices and encourage him/her to be involved in treatment as much as possible. For example, a young child may be able to hold the thermometer in place. A teenager may be able to help care for his/her own central line.
Coping with isolation
In the hospital, your child may be separated from family, friends and the usual activities of home. Using phone calls, email and other ways to stay in touch with family and friends can help your child feel more connected. Your child life specialist may have creative ideas for activities your child can do in the room. When your child can leave the room, meeting other children in the hospital and talking to someone sharing a similar experience can also help.
Talking about feelings
It’s normal for you and your child to have a range of feelings. Talking about feelings with your child can provide comfort. Pictures or stories may be useful for helping a younger child express feelings. Share your Feelings (PDF) and How are you feeling today (PDF) are downloadable worksheets that can help your child talk about emotions.
Managing pain and side effects
Some possible side effects after transplant 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 pain. Some children may not express pain or don’t have the words to say how they feel. Your child’s health care team members are experts in working with and caring for children through transplant. You know your child best. Talk with your child’s health care team about any changes you see in your child’s health or concerns you have.