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Talking With Your Child About Cancer

" Should I tell my child about the cancer at all? "

Learning that your child has cancer is perhaps the hardest news you ever have had to face. As a parent, you must now decide how to tell your child.

The questions that many parents ask are: "What should my child be told?" "Who should tell my child?" and "When should my child be told?" This booklet was written to help you answer these questions.


You probably already are asking, "Should I tell my child about the cancer at all?" In the past, children were often shielded from the diagnosis. But, studies show that most children know they have a serious illness despite attempts of parents and health care workers to protect them.

Most likely, your child already suspects that something is wrong. He or she may not feel well, is seeing the doctor more often, and has had some uncomfortable and frightening tests. Your child also may sense the anxiety and fears of family members and close friends.

Children who are not told about their illness often depend on their imagination and fears to explain their symptoms. Many children with cancer believe their illness is punishment for something they have done; as a result, they may feel unnecessary anxiety and guilt. Health professionals generally agree that telling children the truth about their illness decreases stress and guilt. Knowing the truth also increases a child's cooperation with treatment. In addition, talking about cancer often helps bring the family closer together and makes dealing with illness a little easier for everyone.


Who should tell my child?

The answer to this question is personal. It depends on the relationship you have with your child and on your own feelings and attitudes. You may want to tell your child yourself, or you may want your child's doctor to help explain the illness. Either way, you or someone close to your child should offer support, encouragement, and love.

If you choose to tell your child yourself, talking to others might help you decide what to say. Health professionals such as your child's doctor, nurse, or social worker can offer ideas. Talk with parents of other children with cancer. Contact members of support groups such as the Candlelighters Childhood Cancer Foundation for advice.* Thinking about what you want to say, talking it over with other concerned adults, and rehearsing it with someone close to you will help you feel more at ease.

* To find the Candlelighters chapter nearest you, contact the Candlelighters Childhood Cancer Foundation, 7910 Woodmont Avenue, Suite 460, Bethesda, MD 20814, or call (800) 366-2223 or (301) 657-8401.


When should my child be told?

Because you are the best judge of your child's personality and moods, you are probably the best person to decide when your child should be told about the illness. There is no "right" moment to tell a child he or she has cancer. Try to choose a quiet time and place where you and your child can be alone. This will create a calm and supportive atmosphere. It is probably best to talk with your child soon after diagnosis. Waiting days or weeks gives children more time to use their imagination and develop fears that may be hard to get rid of later.

What should my child be told?

Before you speak with your child, you need to understand the type of cancer he or she has and the treatment that will be given. This way, you will be prepared for questions. Your child will feel more secure if you can provide the correct information.

The amount of information and the way it should be told depend on the child's age and intellectual maturity. As a rule, a gentle, open, and honest approach is best. The following describes general stages in child development and what children are likely to understand about a serious illness at different ages. Please keep in mind that these are only general guidelines. Your child may fit into more than one or none of these categories.


Newborn to 2-Year-Olds

Children this young can't understand an illness such as cancer. They can't see it or touch it. They are more concerned with what's happening to them. Separation from their parents is a major worry. Children more than a year old are concerned with how things feel and how to control things around them. Very young children are most afraid of medical procedures and tests. Many cry, run away, or squirm to try to control what's happening.

After 18 months, children begin to think about what is going on around them. That's why an honest approach is best. Be truthful about trips to the hospital and procedures that may hurt. You can tell your child that needle-sticks will hurt for a minute and that it is okay to cry. This lets your child know that you understand and accept his or her feelings. Your honesty also helps build trust.

Being able to make choices, as long as they do not interfere with treatment or harm health, can increase your child's confidence and sense of control. For example, if a medicine is taken by mouth, your child could choose to have it mixed in apple juice, grape juice, or applesauce.


2- to 7-Year-Olds

Children ages 2 to 7 are better able to understand illness. They tend to look at things from one point of view-their own-and believe that the world revolves around them. They link events to one thing. For example, they usually tie illness to a specific event such as staying in bed or eating jello or popsicles. Children at this age often think their illness is caused by a specific action. Therefore, getting better will happen automatically if they follow a set of rules.

Younger children, in particular, need to be reassured often that they did nothing to cause their illness and that their cancer treatment is not punishment for something they have done, said, or thought. Children in this age group also need to have medical procedures explained honestly and realistically. It helps to remind children that all of the tests and treatments are done to help them feel better.

Simple explanations about cancer are also important. Stories that relate cancer to familiar ideas will help in explaining the diagnosis. These comparisons may be tailored to the child's specific cancer type. The 2- to 7-year-old, for example, understands good and bad. Try explaining cancer and treatments in terms of a battle between "good guy cells" and "bad guy cells." Taking medicine will help the good guys become stronger so they can beat the bad guys.


7- to 12-Year-Olds

Children ages 7 to 12 years are still limited by their own experiences but are starting to understand relationships among several events. Thus, they see their illness as a set of symptoms. They are less likely to believe that their illness resulted from something they did. They understand that getting better comes from taking medicines and doing what the doctor says. Children at this age are able to cooperate with treatment.

An explanation of cancer to this child can be more detailed but should still include familiar situations. Comparisons also are useful in explaining cancer to children in this age group. You might say that there are different kinds of cells in the body, and these cells have different jobs to perform. Like people, these cells must work together to get their jobs done. Cancer cells can be described as "troublemakers," that disrupt the work of the good cells. Treatment helps to get rid of the "troublemakers" so the other cells can work together once again.

Although the understanding of death varies among 7- to 12-year olds, many children in this age group think or worry about dying. However, they often are afraid to say anything to you. Be open and honest with your child. Tell your child that you, the doctors, nurses, and others are doing everything they can to make the cancer cells go away. Reassure your child that a lot of children with cancer get better, but no matter what happens, you'll be there. If you are not sure what to say, ask the doctor, nurse, social worker, or chaplain for help.


12 Years and Older

Many children older than 12 years are able to understand complex relationships between events. They are able to think about things they have not experienced themselves. Teenagers still define illness by specific symptoms such as tiredness, and by limits on everyday activities, but they also understand the reasons for their symptoms. Thus, you can explain cancer as a disease in which a few cells in the body go "haywire." These "haywire" cells grow more quickly than normal cells, invade other parts of the body, and disrupt normal body functions. The goal of treatment is to kill the "haywire" cells. Then the body can function normally again, and the symptoms will go away.

Teenagers understand that cancer can lead to death. They need to be reassured that much progress has been made in treating childhood cancer. They also need to know that many children who have cancer survive their disease and live normal, healthy lives. In fact, the number of survivors is increasing all the time.


Keeping lines of communication open

Throughout treatment and followup care, you should continue to talk openly with your child. Like many other children, your child may, with time, ask more complex questions. Setting up patterns of open communication early will support your child now and strengthen your relationship for years to come.

At times, you may feel strong emotions when you are with your child. You do not want to burden your child with your fear, anger, or sadness. But children often are aware of how you feel. In fact, children may hide their own feelings to protect their parents. You may want to discuss your feelings with your child if you think they interfere with your relationship. You can tell your child why you are sad. This reassures your child that you are not angry with him or her and also lets your child express feelings. Let your child know that it is okay to cry and be sad. This gives him or her permission to show feelings.

During treatment, it is important to remember that you, your child, and the health care team are partners. Children who truly feel like a member of this team are more likely to cooperate and to accept treatment. You can help your child by explaining what will happen and allowing him or her to make simple, safe decisions about care.

Questions your child may ask

Children often are curious and may have many questions about their illness and treatment. Your child knows and trusts you and will expect you to respond to questions. Some children will ask questions right away, while others will ask them later. Here are some ideas to help you answer some of the questions your child is likely to ask.


"Why Me?"

Children, like adults, wonder why they have cancer. They may feel strongly that their cancer was caused by something they did. A child with cancer should be told honestly that no one-not even the experts-knows why a person develops cancer. Children need to be reassured that nothing they did, or didn't do, caused their disease. Children also need to know that their illness is not contagious-they did not "catch" cancer from someone else.


"Will I Get Well?"

Often, children know about family members or friends who have died from cancer. As a result, many children are afraid to ask if they will get well; they fear the answer will be "no." You should tell your child that cancer is a serious disease but that the medicine, x-rays, and/or operation will help to get rid of the cancer. You should also tell your child that the doctors, nurses, and family are trying their best to cure the cancer. By using this approach, you are giving your child an honest, hopeful answer. Knowing there are caring people such as doctors, nurses, counselors, and others also may help your child feel more secure.


"What Will Happen to Me?"

When children are first diagnosed with cancer, many new and frightening things happen to them. While at the doctor's office, clinic, or hospital, they may see other children with cancer who are not feeling well, are bald, or have had amputations. A child may be too afraid to ask questions and may develop unrealistic fears about what will happen. For this reason, children should be told in advance about their treatment and possible side effects. They should know what will be done to help if side effects occur. Children also should know that there are many types of cancer and that what happens to another child will not necessarily happen to them, even if they have the same type of cancer or the same type of treatment.

Children should know about their treatment schedule. They also should be told about any changes in their schedule or in the type of treatment they receive. Having your child keep a calendar that shows the days for doctor's visits, treatments, or special tests will help prepare for these visits.


"Why Must I Take Medicines When I Feel Okay?"

Most of us link taking medicine to feeling sick. It's confusing to children to take medicines when they feel well. Answers to this question may relate back to the original explanation of the cancer. For example, children could be told that even though they are feeling well and have no signs of disease, the "bad-guy cells" are hiding. They must take the medicine for a while longer to help find the bad guys and stop them from coming back.


"What Should I Tell the Kids at School?"

Children with cancer are concerned about how their friends and schoolmates will react. This is especially true when they have missed a lot of school or return with obvious physical changes such as weight loss, weight gain, or hair loss. Encourage your child to keep in touch with close friends and classmates. Friends often want to know what happens when a child is away from school. Encourage your child to talk honestly about the disease and the kind of treatment being given. Suggest that your child reassure friends that they cannot "catch" cancer from anyone. You or one of the teachers at school also may be able to talk to other students.

Try to help your child understand that not all people, including some adults, know about cancer. People who don't understand cancer often act differently or may give your child incorrect information.

Such talks with others may cause your child to have doubts and fears despite all your reassurance. Ask your child about conversations with others so that you can correct any misunderstandings.

You may want to ask your child's doctor, nurse, or social worker about a school conference, classroom presentations, or a school assembly that includes a question and answer session to help other students better understand cancer and what is happening to your child. Your child's teachers or the school counselor can help.

Your child will learn two important lessons about how people react to illness. First, some people, no matter what they are told, may act different because they do not know much about cancer. Second, good friends will remain friends. They know your child is still the same friend as before.


Will I Be Able To Do the Things I Did Before I Got Cancer?

The answer to this question is individual and depends on the child's type of cancer and treatment. Most likely, your child will need some restrictions at different times during treatment. Tell your child why the doctors or nurses think it's best to restrict certain activities and how long this will last. Help your child substitute one kind of activity for another. For example, you could suggest that friends come over to paint, have a snack, or play video games if the doctor feels that your child should not ride a bike because the chance of injury is high.


Supporting your child

Like adults, children with cancer feel uncertain, anxious, and afraid at times. But, unlike many adults, children often are not able to talk about their fears. Instead, they may express their feelings by being unpleasant, boisterous, or bossy, or by being quieter than usual. As a parent, you know how your child usually behaves, so you will probably be the first to notice any differences. Play is a way for a child to express and reduce fears and anxieties, and you should encourage it. Drawing pictures and playing with puppets, dolls, and even medical supplies are ways children may show that they don't understand what is happening or that they need more reassurance and love.

Some children find it hard to express their feelings. These children may have nightmares or eating or behavioral difficulties. They also may not do as well in school. Some children resume behaviors that they had outgrown, such as bedwetting or thumbsucking. You should talk about these things with your child's doctor, nurse, social worker, or school counselor.

Remember that through the years, you as a parent already have developed a "sixth sense" about your child. You do not need to look for problems in the way your child behaves. If problems exist, they will be obvious to you. Also, remember that your child's doctor, nurse, social worker, teachers, and school counselor have had experience with situations like yours and are willing to help.


Here are ideas for reassuring your child during the cancer diagnosis and treatment:

*Remind your child that the cancer is not caused by anything he or she did.

*Neither the disease nor the treatment is punishment.

*Be honest and realistic in your explanations of procedures and treatments.

*Let your child know about any changes in treatment.


Nobody-not even your child-expects you to know everything. Don't be afraid to say "I don't know." If your child has questions that you cannot answer, tell him or her that you'll try to find the answers.

Don't be afraid to ask your child questions. Asking children what they are thinking and feeling does not create new fears; it gives them the chance to express the fears they already have.

Tell your child that it is okay to feel sad and cry. This provides an outlet for emotions.

Set limits. During this period, your child may challenge the rules you've set. It's natural to let ill children "bend the rules," but this actually may make them more anxious. They may imagine that things are worse than they really are.

Let your child have some control as long as it does not harm his or her health or interfere with treatment. This allows your child to grow in spite of the needed restrictions.


Encourage activities to reduce anxiety. Drawing, playing with medical supplies or puppets, and role-playing may help your child express feelings. Therapeutic play with a social worker or psychologist can help young children better understand and adjust to their illness.

Encourage your child to talk about his or her feelings. Frequent family talks can help reduce anxiety. Talking helps the whole family cope with this illness together.

Recognize that children, like adults, have good days and bad days.

Remember that the health care team is there to answer questions and give support to you and your family.

Children, especially those younger than age 5, worry about being separated from their parents. Reassure your child that even though you have to leave, you love him or her and will return as soon as you can.

Help your child keep in touch with friends, family members, and schoolmates while away from school. This tells your child that he or she is still a normal kid with friends, interests, and responsibilities.

Encourage your child to do homework and to go back to school as soon as possible. If your child is unable to attend school, even for a short amount of time, you may be able to request a tutor or a teacher to come to your home. Encouraging your child to keep up with schoolwork, even at home, will send a positive message.


Despite all that is going on, your child is the same person as before, with the same emotional needs as any other growing child. Take some time each day to love and enjoy each other as much as you can.

Talking with a child about cancer is not easy. We hope this information has given you some helpful ideas. You also can use these ideas when talking with your child's brothers, sisters, and friends.

Source: National Cancer Institute - June 2000

related info
National Cancer Institute

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