Support for teens
Blood stem cell transplant is complicated and it’s normal to have questions. You can always ask your team questions along the way. Your loved ones and NMDPSM are here to help you, too. Some of your questions might not be about the actual transplant but about how transplant will change your life—both in good and bad ways.
Answers to questions you might have
Here are some common questions you might have along with insights from other teens and young adults who have been where you are today.
During transplant, you probably won’t be able to see your friends as often as you are used to. When you do see them, it may be in the hospital. Talk with your transplant team about ways to stay in touch with friends. Find out the hospital’s visiting hours.
“I’d probably have a friend there just about every day. Sometimes they’d come down in big groups and when they’d come we’d watch TV. Sometimes they’d be doing their own thing and I’d just be kind of laying on the bed and I couldn’t interact with them much because I didn’t have the energy much. But just knowing that they were there really helped.”
—Joe, transplant recipient at age 15
Your mom, dad or other family members will be with you a lot when you’re in the hospital. When you get home after transplant, they’ll be with you all the time for a few weeks to months. This way, you can know someone is there watching out for you while you focus on your recovery.
Sometimes it may seem like your mom or dad are extra strict or controlling after transplant. This is because they want to protect you. It’s okay to talk with them about this. Think about what you need. Maybe it’s more privacy, more involvement in treatment decisions or more independence. Ask about ways to get what you need and reassure them that you still need their support.
It’s common for students to have an Individual Education Plan (IEP). For a few weeks or months before and after transplant, most teens will have special accommodations to do their schoolwork outside of the classroom. Ask your transplant team if there is a teacher or tutor at the hospital to help you keep up with schoolwork. Read more about going back to school or college.
“It’s good to ask your transplant center what kind of resources they have when you go back to school. Many social workers will go visit the school, even before you return and talk to your classmates about what you’ve gone through and what they can expect from you and how they can help you get reacquainted with being back at school.”
—Margaret MacMillan, MD, transplant doctor
After transplant, most people lose their hair. It grows back, but it can take time. Sometimes the medicines you take before and after transplant can cause weight gain, weight loss or acne. These changes can be bothersome, but they are temporary. It can help to talk with other teens going through similar changes. Ask your transplant center if there is a teen group or program you can join.
“During my transplant I had no hair on my body. I was about 100 pounds lighter. After the high-dose chemotherapy I had extreme sores in my mouth and didn’t really eat for 7 or 8 days.”
—Matt, transplant recipient at age 24
Yes. Ask questions about your treatment. You have the right to know what is happening and to help make decisions. Ask your parents and transplant team to talk with you about treatment options.
“I think it’s extremely important for teenagers to ask questions because it’s their body and when you’re a teenager, you know your body.”
—Ashley, transplant recipient at age 19
If you might want to have children in the future, tell your doctors right away. Chemotherapy and radiation can affect your fertility (your ability to have children), but there are ways to help preserve, or keep, your fertility.
Not all transplant recipients become infertile (unable to have children). If you don’t want to have a child, you must use birth control.
“Because of the chemo and radiation, I can’t have kids physically. That’s not going to stop me from having a family. I’m going to adopt kids from different countries. It’s just not an option for me not to have kids. I’ve always wanted kids.”
—Ashley, transplant recipient at age 19
Talk with your transplant center. There may be a group or program just for teens. If you’re 18 years old or older, the NMDPSM Peer Connect program can connect you by phone or email with another young adult who’s gone through transplant.
“Sometimes your parents or other kids at school, they don’t quite know what you’re going through and they don’t sometimes know what to say. But if you talk to people that have gone through it, they can give you helpful advice, you know, just to know what to expect and that kind of stuff.”
—Joe, transplant recipient at age 15
Here is some advice from other teens who’ve been through transplant.
“Following the rules is very important. I could not go out to the movies, no shopping, no nothing, stay home and if you want to go eat, mom has to go and get it for you. But it’s very important, because if you were to spike a cold or fever or anything, then snap a finger. You go back to the hospital.”
—Mary, transplant recipient at age 18
“Make sure that you advocate for yourself. You know if you’re scared or you’re not quite sure what’s going to happen or how something’s going to happen, just ask to make sure you understand that. I think once you do understand what’s going on, you’re a little bit more confident.”
—Joe, transplant recipient at age 15