As a parent of a teenager being treated with a bone marrow or cord blood transplant, you may face some unique challenges. Your teen will need support, but at the same time may want freedom and privacy.
Supporting privacy and independence
A teen being treated with transplant gives up a great deal of privacy and independence. There are several ways you can help give your teen a sense of control:
- Encourage your teen to participate when talking to the health care team.
- Encourage your teen to be involved in decisions as much as possible.
- Encourage your teen to talk about feelings and concerns.
- Respect your teen’s privacy. Create a plan together for how to update family and friends about your teen’s transplant progress.
- Support and encourage your teen to be responsible for self-care. For example, getting daily exercise and caring for a central line are tasks your teen may be able to do. Be sure your teenager understands the importance of taking all medications exactly as directed.
It is important for teens to be involved 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 your teen is told about what will happen during a transplant and agrees to the plan. Informed assent is an opportunity for your teen to be involved in decisions about treatment, voice concerns and have an active role in treatment.
Helping your teen stay connected to friends and activities
Encourage your teenager to learn from and connect with others who are navigating the transplant process. Insights e-community provides stories, videos and forums specifically for young adults experiencing life before, during and after a transplant.
Teens want to think and act for themselves, but they also want to feel normal. To support your teen, you can encourage your teen to:
- Stay involved in schoolwork. Encourage your teen to talk to you about any challenges they encounter.
- Stay in touch with friends through visits (if possible), phone calls, email and websites like those you can set up on Caring Bridge.
- Stay involved in activities and hobbies that they enjoy and develop new interests. Transplant center staff can offer ideas to help your teen be creative in staying connected to interests while in the hospital.
- Plan for life after transplant. Help your teen think about short-term goals, such as going back to school, and long-term goals for the future.
- Find creative ways to deal with changes in body and appearance to help keep a positive self-image. If your teen has hair loss, choices of hats, scarves, wigs or going bareheaded can be opportunities for self-expression.
- Join Insights e-community to stay informed and connected to other young adults, transplant patients and recipients.
Protecting your teen’s fertility
While most teens are not yet thinking about becoming parents, planning ahead may improve the chances that having a child will be an option for them later in life. Many people who receive a transplant become infertile as a result of their treatment. Before transplant, talk to your doctor about options to protect you teen’s fertility for the future. Encourage your teen to ask the doctor questions. Another resource for information is Fertile Hope.