“Your child needs a transplant” are some of the most difficult words a parent can hear. The uncertainty, feeling of helplessness, emotional stress and fatigue associated with deciding whether or not to proceed to transplant affects the entire family.
Young children may demonstrate rebellious or babyish behavior. Teens may express anger toward loved ones, engage in risky behavior or attempt to shut parents out. Young siblings may worry that they caused the ill child’s disease, or resent the extra attention that child receives. Stress in marital relationships may intensify as everyone tries to cope with the difficult situation.
One thing is true: a transplant is a family affair. Acknowledging that everyone feels scared, but that everyone is working hard to make the child well, can help the family pull together to face the challenges ahead. Sharing age-appropriate information with the child and siblings about the disease and treatment is important.
Choosing whether or not to proceed to transplant is a difficult decision. The first place to start is by getting information. Ask questions – lots of them - and don’t hesitate to ask the medical team the question again if you don’t understand the answer.
Let your child ask questions as well. It is important to involve the child in the decision making process and secure his cooperation and trust.
Seek out second opinions. Often, two different transplant programs will offer different treatment plans for the same disease.
The initial discussion with the transplant team is a particularly stressful time. The team will lay out, in great detail, all the potential risks associated with the treatment. You will feel overwhelmed. It helps to organize your concerns by breaking risks up into three groups: those that always happen, those that sometimes happen, and those that rarely happen.
Your Child's Donor
If a sibling is to be the bone marrow or stem cell donor, it’s important that his or her questions are answered as well. Its easy to focus so much on the sick child that we forget that the donor is a patient too with questions and worries. Explaining and demonstrating the medical procedure to the donor, and assuring the child that a parent or loved one will be there when he or she wakes up, can help ease the donor’s fears.
While it may be tempting to encourage the sibling donor by saying 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 may create problems later if the transplant does not succeed.
If your child needs a transplant with an unrelated donor, ask the transplant center whether they will search only for adult donors or for cord blood donors as well. Some centers do not perform cord blood transplants, and this may be a treatment option to consider, particularly if you cannot find an adult donor.
Understanding Issues with Fertility
The ability to have children following a transplant is an issue you need to discuss with the transplant team prior to transplant. Depending on the child’s age at the time of transplant, the child may become infertile afterwards and may not be able to bear children. Read the Having Children After Transplant section of our web site for a detailed discussion on options available to preserve fertility after transplant.
Preparing for the Transplant
Find out what services the transplant center offers the family. Is there counseling for the child’s siblings? Support groups for parents? Financial aid? Lodging for the family, if from out of town? You may be eligible for subsidized housing at a Ronald McDonald House. Some centers even offer schooling for siblings, if the family is from out of town.
Talk with other parents whose child has been through transplant. They can help you anticipate what the experience will be like and provide emotional support. Contact BMT InfoNet's Caring Connections program to find a parent with whom you can talk, or ask the social worker at the transplant center to put you in touch with another parent.
Once the decision is made to proceed to transplant, it helps to have the entire family see where the child will receive treatment. Let the child practice medical procedures involved in the transplant on dolls beforehand so they are less scary. Let siblings see where the child will be while away from home.
Don’t forget to continue giving attention to the the patient’s brothers and sisters. Although it may be hard to schedule, setting aside some special time to spend alone with siblings can help them feel more loved and appreciated. It can be difficult for them to watch the sick child get so much of their parents’ attention.
Supersibs! is an organization that honors the siblings of cancer patients. They provide periodic, age appropriate care packages and other support services to them.
Working with your child’s school
School is an integral part of children’s lives, so letting the school know what is happening is important both for the transplant child, as well as siblings. Educating both the teacher and the children’s classmates about the situation can 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 sick or different. Some transplant centers help school teachers educate children about the child's disease and treatment while the patient is hospitalized.
Your health 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 process of your child’s transplant will be long, with many ups and downs. You will have to balance the needs of many different people.
Here are a few tips to remember:
- Avoid the temptation to skip meals or sleep.
- Let other friends help with household chores, and running kids to activities.
- It’s OK to 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.
Through everything, remember this: thousands of children have been through a transplant and are now living normal, healthy lives.