Choosing whether or not to proceed with a transplant is a difficult decision. The odds of success must be weighed against the certainty that the transplant will be a lengthy, rigorous procedure with side effects. There is often no clear-cut right choice, and you and your child can be frustrated about having to choose between several unpleasant options.
The amount of information you receive can be overwhelming. It helps to have more than one adult present during meetings with medical personnel and to keep a journal of notes.
Don’t be shy about asking questions, even if you feel it’s the hundredth time the question has been asked. Bring a written list of questions to your meeting with doctors and keep asking until you feel you have enough information to make a decision. It is the medical team’s job to make sure all questions are answered, no matter how long or how many repetitions it takes.
Let your child ask questions as well. It is important to involve your child in the decision-making process and secure his or her cooperation and trust.
Questions Children Ask
Children’s questions and concerns about the transplant vary depending on their age. Encourage your child to ask questions of both you and the medical team. Even if the question seems trivial to you, it is important to your child and deserves a respectful and caring answer.
Younger children focus on immediate problems and ask questions such as:
- How much will it hurt?
- Will I be separated from my parents?
- When can I return to school?
- When will my hair grow back?
- Will I vomit a lot?
- Will I have chemotherapy again?
After acquiring a basic understanding of the procedure, younger children tend to rely on their parents to decide what’s best.
Teens, on the other hand, take a much more active role in the decision-making process and, by law, must give their consent for the procedure in most states. Teens may be concerned with:
- self-image, such as hair loss
- fitting in with peers after transplant
- isolation
- infertility and sexuality
The possibility of infertility after transplant can be distressing for an adolescent. Sexual identity and activity are important to teens. Many don’t understand the distinction between being fertile and being sexually active.
It helps to assure them that many adults are infertile yet lead a normal sex life. The information in the Preserve Your Fertility section of this website will help you and your teen prepare for a discussion about fertility with the medical team.
Talk to Your Child’s School
School is an integral part of children’s lives. Let your child's teachers, as well as the siblings' teachers, know what is happening. This can help avoid unpleasant experiences such as having classmates tease siblings about the sick child, worry that they may catch the child’s disease, or react inappropriately once the child returns to school and looks different.
The Leukemia and Lymphoma Society's Trish Greene Back to School Program can help your child's teachers understand your child's illness and treatment and how best to discuss the situation with classmates.
Sibling Donors
If your child's brother or sister will be the stem cell donor, it's important that his or her questions are answered as well. It is easy to focus so much on the child who is ill that we forget that the donor is a patient. too.
Set aside time to talk with your child about the medical procedure he or she will undergo to donate bone marrow or stem cells. Clearly explain the medical procedure using words your child can understand. Assure your child that a parent or other trusted person will be with them during the procedure. Encourage your child to ask questions and talk about his or her feelings.
It may be tempting to encourate a sibling donor by emphasizing how important his or her role will be in saving the sick child's life. That puts a lot of pressure and responsibility on a child and can create problems later if the transplant does not succeed.
Helping Siblings Cope
Your child's illness and hospitalization will be stressful for all your children. When possible, try to maintain your family's routines and reserve some quality time for each of your children, even if it can only be brief.
Assure your children that they are not responsible for the child's disease and that they will not catch your child's illness.
Your child's siblings may experience many different emotions. They may be:
- angry at the disruption in family routines
- jealous that the sick child is receiving more attention
- embarrassed by changes in the sick child's appearance
- sad because parents are spending a lot of time away from home
- afraid that things will never get back to normal
- confused about their feelings
Some children are able to express their worries verbally, while others demonstrate their concerns through behavioral changes such as:
- regressing to behaviors typically seen in younger children such as thumb sucking, bedwetting or clinging to parents
- changes in eating habits
- poor performance in school
- hitting or fighting
- complaining of physical symptoms such as a stomachache or other pain
- Ignoring the sick child
Encourage your children to ask questions and talk about their feelings. Acknowledge that everyone in the family is worried, but that together as a family you will work through the situation.
Most pediatric transplant programs have counselors who can help your child's siblings work through their concerns.
Helpful Resources of Children and Parents
NMDP offers videos and other information for children undergoing a bone marrow transplant and their parents.
The Leukemia and Lymphoma Society offers a variety of resources to help children and teens as they go through transplant
