Preparing your child for transplant is a challenging task. How much information you share and when you share it will depend on your child's age and maturity. Letting your child know in advance what will happen at the hospital will make your child less anxious.
Be Honest With Your Child
Your child will have many questions about the transplant and how it will affect his or her life. It is important to be honest when responding.
Being honest with your child will build trust in you and the medical staff throughout the transplant experience.
How much information you give your child will depend on the child's age.
Younger children tend to focus on:
- whether the transplant will hurt
- whether they will be separated from their parents
- when they can return to school and regular activities.
If they had prior therapy for their disease, they may worry about having chemotherapy again, whether their hair will fall out and whether they will feel ill. After acquiring a basic understanding of the procedure, younger children rely on their parents to make appropriate decisions on their behalf.
Teens, on the other hand, take a much more active role in decisions affecting their health and, by law in most states, must give their consent to the procedure.
They tend to be concerned about: self-image, and focus on issues such as losing their hair and fitting back in with peers when the transplant is over.
Teens may also worry about becoming infertile, and may confuse fertility with sexuality. Making it clear to them that you can have an active sex life, even if you are infertile, can help ease their worries. The information on the Protecting Your Fertility page of this website will help you and your teen prepare for a discussion about fertility with the medical team.
Encourage Your Child to Ask Questions
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.
When talking about the transplant procedure, be sure to use words your child can understand. Even some common medical terms can be confusing for children.
For example, some children think a bone marrow transplant means their bones are going to be replaced.
Reassure your child that the transplant is not a punishment for something he or she did wrong. Younger children, in particular, engage in magical thinking and may worry that a bad thought they had or something they did caused them to be sick and need a transplant.
Assure your child that he or she will not be alone at the hospital. Let your child know that you and other family members will be with him or her at the hospital as much as possible.
When to Talk to Your Child about Transplant
The best time to talk with your child about the transplant will depend on his or her age, maturity and ability to process information. Choose a quiet time to talk with your child when you can answer questions without interruptions.
- Newborns to age 2: Children at this age are too young to process verbal information about the procedure, but will pick up on distress cues from parents. Preparing yourself mentally for the procedure and remaining calm will help your child remain calm.
- Pre-Schoolers: At this age, discussing the trip to the hospital with your child a day or two before transplant for younger children, or three to five days before transplant for older children, is appropriate.
- School Age Children: School age children need time to reflect on information and ask their questions. Talking about the trip to the hospital a week in advance will give them time to ask questions and express their worries.
- Teens: At this age, children should be involved in the discussion about transplant from the very beginning.
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 offers the Trish Greene Back to School program through its local chapters. The program can help your child's teachers understand your child's illness and treatment, and how best to discuss the situation with classmates.
If your child's brother or sister will be the bone marrow 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 donating marrow. Clearly explain the medical procedure using words your child can understand. Assure your child that a parent or other trusted person will be with him or her during the procedure. Encourage your child to ask questions and talk about his or her feelings.
It may be tempting to offer encouragement to a sibling donor by emphasizing how important his or her role will be in saving the sick child's life. However, that puts a lot of pressure and responsibility on a child and can create problems later if the transplant does not succeed.
Helping Siblings of Transplant Patients 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. These can include:
- 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 stomach ache 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 or sad, but that together as a family you will work through the situation.
Some children are better able to describe their feelings by drawing or painting a picture about how they feel, or acting out their feelings through role playing. You can encourage your child to tell a story that may reveal his or her feelings.
Most pediatric transplant programs have counselors who can help your child's siblings work through their concerns.
Your Health, as the Caregiver, is Critical to Your Child’s Health
You cannot be a good caregiver for your child unless you take care of yourself. It’s one of the hardest things for parents to remember.
The transplant process will be long, with many ups and downs. You will have to balance the needs of many different people.
Here are a few tips that can help:
- Identify someone with whom you can discuss your feelings.
- Avoid the temptation to skip meals or sleep.
- Let friends help with household chores, and running kids to activities.
- Let a friend take you out for an hour or two of relief. Schedule time for yourself, even if it’s just a short walk.
- Ask if there is a support group for parents.
- Talk with another parent whose child had a transplant. BMT InfoNet's Caring Connections Program can put you in touch with another parent who understands your feelings and concerns.
Through everything, remember this: thousands of children have been through a transplant and are now living normal, healthy lives.
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