Caring for the Whole Family

When you learn your child needs a bone marrow or cord blood transplant (also called a BMT), life changes for your whole family. Each family is different and each family finds its own way to cope with the challenges of the transplant process.

Getting your family ready for transplant

Your family will make many adjustments during your child's transplant and recovery. You will need to make plans for who will be where and when. You will need to decide who will care for your child in the transplant center and who will manage your family's other needs at home. If your transplant center is far away, you will need to find a place to stay and make travel plans. If you live near the transplant center, you will need to plan how to juggle caring for your child in the transplant center with your other responsibilities.

Your family may spend less time together than usual. Each of you may need to take on new roles and tasks. To help your family manage these challenges:

Don't feel you have to do it alone. Be willing to ask for and accept help from friends and extended family.
Decide who will be transplant caregiver. Try to plan for parents and/or other family members and friends to rotate care and give each other breaks from the hospital.
Make a financial plan.
Talk with transplant center staff about what to expect. You may also want to talk to other parents of transplant patients — ask whether your transplant center can put you in touch with other families.
See Getting Ready for Your Child's Transplant: A Checklist (PDF) for other ideas.

For a free, easy online tool to organize family and friends who want to help, see Lotsa Helping Hands: http://www.marrow.lotsahelpinghands.com. With this private group Web calendar, people can see what help is needed and when, so everyone can pitch in to help make your family's life run more smoothly.

Meeting the needs of your well children

A brother's or sister's transplant can have a profound effect on a child. As a parent, much of your time and energy will be devoted to the child receiving the transplant. Your other children may feel guilty, scared, neglected, frustrated, angry — and this is to be expected.

If a brother or sister is serving as your child's donor, he or she may feel excited or afraid. If there are any problems with the transplant, the donor may feel it is his or her fault. It may be helpful for the donor to meet with a social worker, child life specialist or psychologist to talk about his or her feelings. The Children's Reading List also has resources that may be helpful.

Some things you can do to respond to your other children's needs include:

Talk with them openly about their sibling's illness and transplant. Your social worker or child life specialist can help you with age-appropriate material to guide you.
Listen to them. Encourage them to ask questions and express feelings. Let them know their feelings are real and it's normal to have a lot of different feelings.
Be sure they know they did not cause their sibling's illness and they cannot catch the disease from their sibling.
If your transplant center allows siblings to visit, bring them to tour the transplant center and meet with a child life specialist. Ask your transplant center about a support group or other services for siblings.
Try to keep their daily routine as predictable as possible. Encourage them to keep up activities, such as school, sports and time with friends. Plan opportunities for fun.
Let them know who will care for them when you cannot be there. You may also want to ask another adult to spend time with each child, to help him or her feel special and talk about what is happening in the family.
If siblings cannot visit the transplant center, brainstorm ways that they can keep in touch and feel involved. For example, send letters, talk on the phone, take photos or make a video. Enlist their help when you return home.
Find time to have special moments together with each child. Let them know you love them equally.
Alert your children's teachers and/or day-care providers to what is happening so they can better support your children and let you know if they are having problems.

Siblings can be especially helpful during this time and it's important they feel they are part of the team. Helping Your Brother or Sister through Transplant (PDF) is a list of ideas and encouragement you can print and share with your healthy children. The ideas are from the workbook that comes with the children's DVD, Discovery to Recovery. The DVD may be helpful for your healthy children as well as your child undergoing transplant.

Your relationship with your spouse or partner

Helping your child through transplant can be a challenging time in your relationship with a spouse or partner. You may have very little time together. You and your partner may cope in different ways — some people want to talk, others withdraw, some gather data and others are overwhelmed by too much information. Old tensions can grow and new ones can develop.

It helps to plan ahead. Make plans for who will handle different roles and responsibilities. You can also plan how you will meet your own needs and sustain each other.

Set aside time for each other. You may have to be creative — take lunch breaks or walks together. Ask someone to stay a few hours with your child.
Talk about your feelings, support each other and show each other affection.
Be flexible. Try to understand that there is more than one valid way of coping with stress. It is okay for you to express concern in different ways.
Try to take turns caring for your child in the hospital. Sharing this responsibility gives you and your partner a shared understanding of what is happening and can help you support each other.

If you and your child's other parent are separated or divorced, it is important to work together to focus on your child's best interests. Try to meet together with the health care team, so that you hear the same explanation of the treatment plan. Ask for two copies of written materials so you each have the same information. Agree on a schedule of when each of you will be with your child and how you will handle day-to-day treatment decisions. Be sure you understand your legal custody rights and responsibilities. Give your transplant center copies of any legal documents that affect who can see your child, such as legal custody agreements or restraining orders.

Resources

Your family is not alone. Transplant center social workers, child psychologists and child life specialists are trained to help families through the transplant process. You may get support from your family and friends, faith community and families of other transplant patients. Other helpful resources include:

Support groups offered through your transplant center or an online group, such as BMT-Talk: http://www.acor.org/index.html (look for BMT-Talk under Mailing Lists).
SuperSibs! — Services and support for siblings of children with cancer: http://www.supersibs.org.
Blood & Marrow Transplant Information Network (BMT InfoNet) — Information and connections to other parents of transplant patients: http://www.bmtinfonet.org.
National Bone Marrow Transplant Link (nbmtLink) — Information and links to resources: http://www.nbmtlink.org.
Resources for Children and Families.
The National Marrow Donor Program Office of Patient Advocacy can connect you to other helpful resources and answer your questions about transplant. You can contact the Office of Patient Advocacy by phone or e-mail.

Contributing editors

K. Scott Baker, M.D., Director, Blood and Marrow Transplant Outpatient Clinic, University of Minnesota BMT Program at Fairview University Medical Center, Minneapolis, Minn.
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.