If you are the parent of a teenager being treated with a bone marrow or cord blood transplant (also called a BMT), you face some special challenges. Your teen needs your support, but also wants freedom and privacy. It can be hard for a parent to balance caregiving and giving a teenager room to grow.
Supporting your teen's need for privacy and independence
A teen being treated with transplant gives up a great deal of privacy and independence. You can help your teen have some sense of control over his or her life.
- Encourage your teen to talk about his or her feelings and concerns.
- Let your teen speak for himself or herself when talking to the health care team.
- Respect privacy when talking with your teen about personal concerns.
- Respect your teen's wishes if he or she wants to talk to the doctor without you present. You can still be your teen's advocate when needed.
- Support and encourage your teen to be responsible for self-care, for example, getting daily exercise, caring for a central line. Be sure he or she understands the importance of taking all medications exactly as directed.
- Encourage your teen to plan his or her daily schedule and to be involved in decisions as much as possible.
- Give your teen time alone. Step out of the room if a friend calls. Knock before entering the room.
Teens can be active partners in learning about transplant and making treatment choices. Before a transplant, your transplant center may ask for your teen's informed assent. This means that he or she is told about what will happen during a transplant and agrees to the plan. This is not a legal consent to treatment. For children under age 18, the parents or legal guardians sign the legal informed consent for transplant.
The informed assent process involves your teen in decisions about his or her own treatment. It is an opportunity to tune in to his or her needs, emotions and questions and to offer your support. A teen who has a chance to voice concerns and be involved in decisions may feel more able to play an active role in his or her treatment.
Supporting your teen's need for friends and activities
Teens want to think and act for themselves, but they also want to feel normal among their friends. For some teens undergoing a transplant, self-esteem and relationships with peers become challenging. To help, you can support and encourage your teen to:
- Keep up with schoolwork and stay connected with peers.
- Do things that make your teen feel good about himself or herself — stay involved in old interests and develop new ones. Transplant center staff may have ideas to help your teen be creative in staying connected to his or her interests while in the hospital.
- Stay in touch with friends — through visits if possible, and phone calls, e-mail and Web sites such as those you can set up at www.CaringBridge.org/marrow. If your teen is dating, talk about the role of that person in your teen's day-to-day life and care.
- Plan for life after transplant — help him or her think about short-term goals, such as returning to school, as well as long-term goals for the future.
A positive self-image
Changes in appearance, loss of health and being cut off from social activities can all make it challenging to keep a positive self-image. Staying involved in school and interests and connected to friends can help. It may also help to find creative ways to deal with changes in body and appearance. For example, your teen can wear clothes that make him or her feel good. If he or she has hair loss, choices of hats, scarves, wigs or going bareheaded can be opportunities for self-expression. Your teen can find other ideas and support through several online resources for teens being treated for cancer:
Planning ahead — fertility concerns
Most teens are not yet thinking about becoming parents. However, planning ahead may improve the chances that having a child will be an option later in life. Many people who receive a transplant become infertile as a result of their treatment — see Possible Late Effects of Your Child's Transplant / Infertility for more information. Before transplant, you and your teen should talk to your doctor about options to protect your teen's fertility for the future. Encourage your teen to discuss questions with the doctor, either with or without you present. Another resource for information is the non-profit organization Fertile Hope: www.fertilehope.org.
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.