Preparing Family and Friends

The transplant will disrupt family routines for awhile. Learn how to prepare family members and accept friends' offers to help.

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A transplant is a family affair that will affect everyone, including your children. Family routines will be disrupted for several months. Children will have many concerns that may affect their behavior and emotional well-being.

Before you have a discussion about your, or a family member's, transplant learn the facts about your disease, treatment schedule, and potential side effects. This will enable you to answer your family's questions honestly and with as much detail as is appropriate.

Discussing a Transplant with Children

Set aside a time to talk with your children when you can calmly discuss the situation without distractions, and answer all of their questions.

If you need some emotional support during the discussion, ask a professional counselor, close family member or friend to be present. Local cancer wellness centers often have staff available to help you with the discussion.

The words you choose and level of detail you provide your children will vary according to the age and maturity of the child. You may want to set aside separate times to talk with each of your children if they vary in age.

Regardless of the child's age:

  • Encourage your child to ask questions. Let your child guide you about what concerns him or her most.
  • Be prepared to repeat your answer several times, and respond to questions at surprising times.
  • Be truthful. If a successful outcome from treatment is not certain, assure your child, instead, that the doctors will work hard to help you or your family member get better.
  • Encourage your children to talk about their feelings.
  • Consider enlisting the help of a professional counselor to help your children cope emotionally with the experience.

The amount and type of information you'll want to give your child will vary, depending on your child's age.

Discussing a Transplant with Pre-School Children (age 3-5 years):

Pre-school children think the world revolves around them and will be most interested in how the transplant will affect them personally.

They often engage in "magical thinking" and believe they have the power to control situations, such as whether a parent or sibling gets sick. They may worry that they caused the person's illness by thinking bad thoughts or by misbehaving.

  • Assure your child that he or she will be well cared for while you are undergoing treatment, and identify the caregiver for them.
  • Encourage your children to draw pictures about how they feel.
  • Some may act out their feelings during play.
  • Watch for changes in behavior that may indicate worries your child is unable to verbalize.
  • Assure your child that he or she is not responsible for your illness.
  • Make it clear to your child that he or she will not catch your disease.
  • Consider engaging the help of a professional counselor if you sense your child needs help coping.

Discussing a Transplant with School Age Children (age 6-11 years)

School age children can understand more details about your illness and treatment, and may try to seek out more information on their own.

  • Be specific when discussing your disease and treatment. Describe your disease by name and simply describe what it does to your body.
  • Provide a simple explanation of what the doctors will do to help rid you of the disease.
  • Make it clear that the disease is not something they can catch from you.
  • Encourage your child to talk about his/her feelings. Your child may feel angry, sad or irritable. Behavioral changes can signal your child is in distress.
  • Talk with your child's teachers about your transplant, and provide them with information that will help them understand your child's concerns and behavior while you are undergoing treatment.
  • If the transplant patient is your child, be sure to discuss the situation with siblings' teachers as well.
  • Explain clearly to your child any changes in routine he or she can expect while you are away.
  • If possible, show your child where you will receive treatment and demonstrate equipment that will be used.
  • Prepare your child for changes in your appearance while you undergo treatment and recovery.
  • Consider engaging the help of a professional counselor to help your children cope with their worries and feelings.

Discussing a Transplant with Teenagers (age 12 and older)

Your teenage children will be prepared to hear more details about your diagnosis and treatment plan. They will have a better understanding of death than younger children, and therefore, may be more concerned.

Because they are at the age when independence is important, teens may be more reluctant than younger children to share their concerns with you. They may also try to protect you by hiding their feelings and worries.

  • Encourage them to ask questions and share their concerns, but realize they may be more comfortable doing so with another family member, friend or professional counselor.
  • Be clear about how routines will change during your treatment, and what you will do to ensure your child maintains a normal school and social life.
  • Watch for non-verbal cues that they are in distress such as unusual anger, depression, rebellion or physical symptoms like headaches or stomach aches.
  • Set reasonable expectations for them. Some teens try to take on more responsibility than they can handle, such as parenting younger children. Plan for an adult to manage these responsibilities in your absence.
  • Consider engaging the help of a professional counselor to help your children cope with their worries and feelings.

Cancer wellness centers have programs to help children cope with a parent's or sibling's illness. You can also ask to talk to other parents who underwent a transplant to learn how they helped their children cope through BMT InfoNet's Caring Connection Program.

Discussing a Transplant with Extended Family Members and Friends

Extended family members and close friends can be a wonderful source of help and support while you go through transplant. Sometimes even those who have not kept in touch with you will rally to your support during this difficult time.

Choose a trusted friend or family member to be in charge of your network of volunteers.

It may feel awkward at first to ask for help, but keep in mind that family members and friends usually really want to help.

Prepare a list of ways family members can help, and be specific. Chores might include:

  • keeping others posted about the your progress through CaringBridge, a Facebook page or a recorded daily message on voice mail
  • caring for your children, taking them to school and after school activities
  • caring for your pets and plants
  • mowing the grass, shoveling snow and other yard maintenance
  • coordinating meals for your family (be specific about family likes and dislikes)
  • shopping for groceries and other household needs
  • cleaning your house
  • paying bills while you are unable to do so
  • doing the family laundry
  • keeping you up to date on family, school and work events
  • donating blood or platelets for you

Websites like Lotsa Helping Hands and Meal Train® can help whomever is organizing help for you do so easily.

When to Say No

Striking the balance between leaning on family and friends for help, and protecting your privacy can be a challenge. Sometimes well-intentioned family members or friends say or do things that are not helpful. They may tell you stories about someone else they knew who had the same disease and had difficulties with their treatment. They may call too often or ask personal questions about your medical condition that you feel are inappropriate.

It is OK to tell people that you're sorry, but you're not ready to hear certain information, or that you'd rather not go into more detail about your condition at this time. Most people will understand, and you can minimize your stress by doing so.

Consider having a trusted family member or friend serve as your point person to handle the many questions from family and friends. This will enable you and your caregiver to focus on your treatment and recovery.

Make Your Wishes Known in Case of Emergency.

If you have not already done so, decide who will have the right to make healthcare decisions for you if you are unable to do so yourself. Sign a Power of Attorney for Healthcare document so that your healthcare team knows who has that authority in case it is needed.

Consider creating a Living Will that specifies the type of medical care you want to receive in case of emergency. This document can help the person who has your Power of Attorney know your wishes and make appropriate healthcare decisions on your behalf.

Watch a video about creating advance directives for your healthcare.

 

Find forms to create a Power of Attorney and Living Will.

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