Frequently Asked Questions
It is common to feel overwhelmed by hearing you have cancer. Many parents imagine that their children will experience a magnified version of their own reaction; however, children are usually more resilient than parents imagine. Each child copes with a parent’s illness according to her phase of development, temperament, and preexisting coping style.
Children take coping cues from their parents, so get the support you need. To help your child cope well, learn about how children at your child’s developmental stage usually understand an illness, taking into consideration your child’s temperament and what approaches typically work best for her when facing new situations. Organize your support system and facilitate open communication with your child. Back
If your child has had difficulties such as anxiety, depression, difficulty making or keeping friends, difficulty with schoolwork, or had conflicted relationships with close family members prior to your diagnosis, he may be at greater risk for trouble in coping with the changes and challenges you are facing now. It may be helpful to anticipate that previously challenging areas can be further strained by the added stress of your diagnosis and treatment. You might want to think about extra supports targeted to help with these preexisting issues.
If you are a single parent or there is significant tension between you and your child’s other parent, you may want to seek additional support for your child. During your diagnosis and treatment, your child will want to rely on at least one other adult who cares deeply for him and shares his concern for you and your health. If your child’s other parent is not viewed by your child as someone who cares about and values you, he will need another loving adult or professional with whom concerns can be shared. Back
If your child is old enough to speak, it is best to tell her about the cancer diagnosis. Children of all ages are perceptive and will sense a change in the emotional atmosphere of your family following your diagnosis. Without an explanation, younger children are at risk of interpreting the shift in mood as evidence that their bad behavior is the cause of sadness, withdrawal, or tensions at home. In spite of efforts to conceal information, older children are likely to learn about your cancer from a relative, another child, or by overhearing discussions in the house.
Learning about your cancer indirectly—by overhearing information about it—is a problem. This scenario may suggest to your child that the news is too awful to speak about. It may deliver the message that your child’s feelings are not important enough to you to warrant direct attention, in contrast to others with whom you are engaged directly. News that is overheard is also much more likely to be inaccurate and confusing. Perhaps most troubling, however, is that children who feel that key information is not being shared are left struggling to find out information from “clues.” This can lead to the belief that you cannot be trusted to be honest and forthcoming. Back
The word “cancer” often has more scary meanings to you than to your child. Using the words cancer, brain tumor, or leukemia instead of euphemisms such as lump, bump, blood sickness, or boo-boo gives your child the words to ask questions about your illness.
Euphemisms are confusing and may be scarier to your child than the real words because she may be left imagining that serious treatments and chemotherapy, hair loss, and radiation, may follow her own lumps, bumps, or viral illnesses. This is scary. Identifying your type of cancer provides an important opportunity for you to talk with your child about how varied different types of cancers are, and how even the same cancer can follow a different course in different people. In these conversations, you can remind your child that she should not assume that what she hears about someone else’s cancer is relevant to your condition. Your child should be encouraged to share what she hears with you, so as not to worry unnecessarily or feel confused. Back
At any age, start with simple explanations. In subsequent discussions, take your cues from your child’s questions. It is often helpful to have a sense of how children of different ages may hear the explanation and how they are likely to understand the diagnosis of cancer.
Preschool children (3–6 years): Preschool children have magical thinking; this means that they weave together fantasy and reality in their own creative way and imagine themselves as the cause of events that occur in their lives. For example, one five-year-old might report his mother’s cancer grew inside her along with him, while another child might believe that her father got his cancer from her jumping on his chest the day that he complained that she was hurting him. Feeling as though they were the cause of events (i.e., normal preschool egocentricity), leads to a sense of responsibility for the parent’s illness, which can increase anxious or aggressive behaviors.
The anxious child feels frighteningly powerful and is fearful of causing additional harm to the people that he loves. That child may become either clingy or withdrawn. In contrast, the aggressive child may feel too overwhelmed to contain her feelings and may try to control other situations by overpowering peers or using force to get her own way. Preschoolers often have anxious or aggressive behavior when both parents are well, so it can be difficult to decide what part of their behavior relates to a parent’s cancer, and what part is consistent with normal development.
In general, it is best to remind your child that cancer is not caused by anything children do or say. Children need to be reminded repeatedly that they are not responsible for a parent’s fatigue or irritability in order to feel that this is really so. Invite your child to tell you what he imagines caused your cancer or the mood in the household. This gives you the opportunity to correct any misconceptions or self-blame.
One of the best ways for children this age to work through their feelings is to have plenty of opportunity to engage in fantasy play. You may want to have a pretend doctor’s kit (Band-Aids and other medical play material) available along with your child’s other toys to facilitate this play.
School-age children (7–12 years): School-age children are old enough to understand that a parent’s cancer is not caused by a child’s actions. Nevertheless, under the stress of changes in family life, your child may regress at times and feel somehow responsible. Invite your child to voice thoughts about the cause of your cancer and let her know that no thought is too silly to share.
Typically, school-age children see the world as ordered. They expect that illness should follow a set of rules and respond fairly to treatment, so that if you follow the doctor’s rules for treatment, then your cancer should be cured. On the one hand, this makes relapse and recurrence hard to accept, on the other, it helps your child feel that if treatment resumes she know what to expect from past experience.
Most school-age children believe that germs transmit illnesses. In the setting of cancer treatment, the focus on protecting a parent with a compromised immune system from exposure to viral illnesses, and emphasizing careful hand washing, is often interpreted by a child as evidence that it is possible to catch the cancer. Unless this misconception is corrected, your child may become anxious and withdraw from you out of fear.
Children this age often think that all cancers are the result of cigarette smoking and may find it confusing or unfair if a non-smoking parent gets cancer. They need help to understand that most cancers have no known cause and that it is upsetting for everyone when a wonderful, loved family member, smoker or non-smoker, gets cancer.
Adolescents: Adolescents can understand the full meaning of a cancer diagnosis, including uncertainty about prognosis and the absence of guarantees despite a treatment regimen. It often frustrates parents that despite understanding the diagnosis and the stress it places on the family, a teenager’s behavior rarely seems consistent with this awareness.
Some teens may deal with uncertainty about a parent’s future well-being by trying to force the parent to make promises that cannot be kept, such as promising not to die. Making a promise your adolescent knows you cannot keep might satisfy your teenager for a moment, but is unlikely to provide any lasting comfort. Teenagers usually do better when parents offer empathy regarding the stress of uncertainty and provide hopeful strategies. For example: “Yes, I could die from my colon cancer, but my doctors and I are not worried about that now. We are focused on the treatments that can shrink the tumor” or “I sometimes worry about the future too, but I also have lots of times when I forget that I am sick and I hope you will try to do the same.”
Many adolescents will throw themselves into peer relationships and activities. This minimizes the time spent with an ill parent or the family, and may help the teen avoid thinking about the cancer so much. You will want to help your adolescent find a good balance between activities with friends, one-to-one time with you, and family time. There are good reasons to protect some amount of family and parent-child time, rather than letting your child spend all of his time away. It is impossible to supervise teens or be aware of their mood and functioning if they are never at home. You know your child well and you need time together to assess how he is doing. Second, if your life is cut short by the cancer, you want to protect your teen as much as possible from regrets about having spent so little time with you and the rest of your family.
Adolescents often have a better relationship with one parent and a more prickly relationship with the other. When you have cancer and a prickly relationship with your child, it is helpful to remind your child that people who love each other still get irritated and mad at each other. Say aloud that in spite of the conflicts you have, you know that your child loves you and that you love your child. Back
It is important to give your child an age-appropriate explanation of your cancer and its treatment. This gives your child the key words to talk with you. Try to create an atmosphere that welcomes discussion, whenever it occurs. Still, some children are talkers and others tend to keep their thoughts to themselves. If your child was not a “big talker” before your diagnosis, she is unlikely to become one now. When new information is shared, your child should be invited to ask questions and then be encouraged to ask questions again several hours or a day later, after having time to mull over the new information. Try to identify the settings that lend themselves to your child opening up. Often, children choose to talk in the car, at bedtime, or while doing an activity— such as cooking—with a parent.
When your child asks a question, you should encourage elaboration of the question. The goal is to be sure that you understand the real question on your child’s mind. As adults, we may imagine a question is more comprehensive than it is. For example, a child might ask, “Will you be all better by summertime?” You might imagine your child is looking for a guarantee of a cure. By asking, “What are you wondering about?” you may find out if this is your child’s actual worry. Your child’s answer may surprise you. She might reply, “If you’re sick, how will I get to swim lessons?” Teasing out the real question helps you address the real worry; many times, what is revealed is a specific concern that has an easy solution.
The less talkative child may not come up with many of his own questions, but may engage more readily in questions about the way your illness or treatment affects him. For example, asking, “How do you feel about my breast cancer?” may get a shrug or a grunt, while asking “How is it working out having Aunt Susan meet you at the bus?” may get more of a response. You also can try specific questions about the effect cancer is having on you: “Has anyone commented on my bald head?” or “Am I grumpier since I started on chemotherapy?” Following-up on questions that get shrugs or one-word answers with a general explanation, to convey why you are asking, is also helpful. For example, “I know there are changes in me and changes in our regular schedule because of my cancer, and I really care about how it is going for you.”
Children may want to have fewer and shorter conversations than would an adult. So, be patient. If your child is continuing to engage in favorite activities with friends and family, and doing okay at school, you should feel reassured. Sometimes, parents who feel their children are not talking enough about the cancer actually need another adult to talk with about the cancer and its impact on the family. Be sure to get the support you need. Remember, having a parent with cancer is a different experience from having a spouse with cancer or having cancer yourself. Back
You can welcome questions warmly without having an immediate answer. Ask your child what got her wondering about this question, and tell your child it is a good question. It is reasonable to reply that the question being asked is a hard one, and that you want to think about your answer to be sure that it is what you really believe before responding. The key is to understand the question and to let your child know you will come back to him with an answer in the near future.
Good questions deserve thoughtful answers; you should determine whom else you might want to talk with (such as your spouse, doctor, clergy person, or another child’s parent) so that you can give a quality answer. You might also want to get information from a book or website to help you answer the question.
Some questions are hard to answer because no one knows the answer. Uncertainty is hard for anyone at any age, but it is especially hard for children, who rely on parents to have all the answers. It is acceptable to say that you too find “not knowing” difficult, and that you cope with uncertainty by keeping busy, by doing fun things, or by trying to be optimistic. Back
Be protective of family time when you can focus on your child. For example, you could turn on the answering machine during meals and not answer the phone. Encourage your friends and family to call during times when your children are at school or to communicate by e-mail, so that the children are not listening (after school and in the evening) to phone conversation after conversation about your illness.
Ask a family member or a close friend to be the “point-person” or “captain of kindnesses” who can direct members of the community toward activities or items that will help you and your children most. For example, let people know that if they want to cook a meal, your children will eat macaroni and cheese or love cheese pizza from the town pizzeria, but that eggplant or stroganoff will go untouched.
It is also important to try to explain to your children when symptoms they see in you are the result of your treatments. For example, chemotherapy makes you feel queasy, so you take anti-nausea medicine that makes you sleepy on treatment days. The more your child can differentiate the effect of the cancer from the effect of the treatment and how these factors impact life at home, the better. This helps explain new household routines and makes home time feel more stable. Back
Yes. It is important that your child’s teachers know what is going on at home. Teachers also need to know that school should be allowed to be, as much as possible, a haven from the cancer for your child.
Whether or not your child talks with friends and classmates about your cancer should be your child’s choice. Teachers should not introduce this information into the classroom discussion. If your child shares worries or concerns with a teacher about your cancer, the teacher should be asked to let you know. Most teachers are relieved to hear that parents want them to continue to act as teachers, not as counselors.
If your child is having academic difficulties, the teacher should let you know sooner rather than later. Some teachers may think they are protecting already stressed parents by withholding this information. To the contrary; knowing early on allows you and your child to come up with an action plan that may include a reduced workload, tutoring, or special homework time. This is particularly important for older children, who may have many teachers. By the time parents become aware that a child is struggling in multiple classes, it is harder for the child to catch up. Back
A child of any age who wants to visit you in the hospital should be allowed to do so, if possible. Your child will need to be prepared with a description of how you will look and what will be seen in the hospital room, such as an IV running into your arm, an elderly confused roommate, wearing an oxygen mask, or being in a hospital robe. Some parents may even send home a photo of themselves to show a child in advance of the visit. The better prepared your child is, the fewer surprises. And surprises can be overwhelming and upsetting.
If you have more than one child coming for a visit, or if the family member bringing your child or children also wants to visit with you, it is important to bring another familiar adult. This person should be agreeable to staying only as long as your child feels comfortable in the hospital room. This other adult can take one or more children down to the cafeteria or outside for a walk, if after a minute or two your child is ready to leave. For younger children, it is especially nice to bring some art materials—paper and markers—so that while in the room or in another location, your child can draw or even make a picture to hang at your bedside.
You may worry that looking ill or being hooked up to machinery is too frightening for your child. Experience suggests that for most children, particularly those who ask to visit, imagination creates a more frightening scenario than the real setting. If you have just completed a surgical procedure and expect to feel much better in a day or two, you may elect to talk on the phone with your child and postpone the visit until you can be more interactive. This is appropriate when a parent is in no immediate medical danger. If a parent is gravely ill, children should have the option to see and speak to a parent without delay. Back
After a visit, each child needs an opportunity to talk about how it felt to see you in the hospital. Often, this occurs on the trip home. The adult taking your child home should inquire whether your child was surprised by what he saw or felt, answer questions stirred up by the visit, and inquire whether he is pleased or regretful about having visited. Your child’s range of positive and negative feelings should be validated as normal. This post-visit conversation can help both you and your child think about structuring, facilitating, or limiting future visits.
Conveying to your child that you want to learn what helps him to cope with challenging circumstances is a healthy message. Being guided by the responses of your child is much better than assuming you know what is best for him. Back
At the end of life, it is often helpful for a child to have a chance to see a parent after learning that the parent is dying. If your child wants to have this opportunity, it is important to try to make this possible. If a child is adamant that she does not want to see a parent, especially if the parent cannot communicate, this too is best respected. Sometimes a child can accompany others to the hospital and stay with a familiar adult in the waiting area outside the room on the hospital floor. Sometimes, once present, the child decides that a visit with the parent would help. Alternatively, the child may speak or write a message to the parent, which can be conveyed by another loved family member or friend, or may be invited to go into the room or stand at the doorway for a few seconds to say or think a good-bye message.
When a parent is in a coma and unresponsive, telling the child that we do not know what someone in this state can hear, but that we believe he or she may sense loved ones in the room, seems helpful—and is true. Then, the child can be encouraged to say aloud or to think anything they want the parent to know. Often, the child will simply say “I love you,” “Good-bye,” or “I will miss you.”
This is an important time for other loving adults to remind the child that the parent knew that he or she was loved by the child and loved the child in return. If there was conflict in the relationship between the parent and the child, it is helpful to acknowledge this fact and reiterate the shared love. For example, “Even though you and Dad got into lots of arguments, people who love each other often get really mad at each other. Dad always loved you and knew you loved him.” Back
Continuing to engage in every day you have is probably most important. Do not underestimate the value of your child being able to tell you about her daily activities, such as the grade on a spelling test, a goal scored at the soccer game, or the unfair thing a classmate said. Children flourish when they feel that the minutia of their lives is important to a loving parent.
Take advantage of opportunities to celebrate, such as birthdays, holidays, a first lost tooth, a great basketball season, or a prom. You can take pictures or videos of the happy times so that they will be recorded and available for your child. Some parents write letters to each child describing their early years together, favorite parenting memories, and admired traits seen in the child. A letter written to your child could also give some general advice, such as work hard and be true to yourself, or surround yourself with people who see the best in you.
Either in conversation with your child or in a letter, it is helpful to let your child know that you hope she will be close to other loving adults. Some children need encouragement to recognize that loving other adults does not diminish their love for their parent and is not being disloyal. For example, telling your child, “I hope you will get closer and closer to Aunt Janet, and other wonderful women like Sarah’s mom. Developing those relationships will help you make good choices for yourself—and will make me proud.”
Celebrate your own birthdays or special events. You might use one of these occasions as an opportunity to ask friends and family to collect old pictures of you and write down funny stories about you as a child or in more recent years. Collecting these accounts provides your child with another vehicle for really knowing you. It may be of interest now and provide an opportunity for telling stories about your past; alternatively, these accounts may become interesting to your child later in childhood or in adulthood. You might create a photo album for each child, beginning with photos of you and your spouse together and moving on to pregnancy, babyhood, and beyond. This album can also serve as a memory book, annotated by you and used as a starting point for telling stories about different times in the life of the family. Back
Memorial services can be meaningful to children. They provide an opportunity for your child to see that the community cared for and valued you, and to share in the sadness of your loss. Memorial services are an opportunity to ask friends and family to send photos and stories, perhaps instead of flowers, which can enrich your child’s knowledge of you.
Children should be encouraged to participate in a service only in ways that feel comfortable. Some children may want to speak, play music, or display something created for their parent. Other children may want to listen and to grieve privately. A child’s emotional tolerance for being present at a memorial service, wake, shiva, or funeral should be respected. Older children will need permission to go to a quiet place when they have had enough, and younger children need a familiar adult assigned to take them out of the service as needed.Back
If your child requests the opportunity to speak with someone outside the family, it is helpful to assist him with doing so. If your child has had psychological difficulties that necessitated therapy prior to your cancer diagnosis, he may benefit from returning for support. If your child has a conflicted relationship with either parent (sick or well) he may benefit from some counseling support to address this. If a child is in conflict with the well parent, he may feel particularly frightened by the vulnerability of the parent with whom he has a good relationship. When the parent with whom the child has the conflicted relationship is ill, the child may feel guilty about past behavior and haunted by angry, hurtful words exchanged in both directions. If there is significant tension and discord between you and your child’s other parent, your child may benefit from having a counselor act as a neutral but caring sounding board.
Children who have symptoms of depression should be referred for help. These include a depressed mood for more than a couple of weeks, a change in sleep pattern, a change in appetite, a loss of interest in favorite activities, feelings of guilt, a loss of energy and concentration, and feelings that life is not worth living. Suicidal thoughts should be taken seriously and support should be sought quickly, even if your child is resistant to the idea.
Children who become anxious may also need professional help. Anxiety that interferes with age-appropriate activities, including sleep, school, and friendships deserves professional assessment.
Some children may exhibit risk-taking behavior, including driving recklessly, taking dangerous dares, or abusing substances. These children need referral for professional help so that they do not hurt themselves or others. Back
© 2013 Marjorie E. Korff PACT Program/PACT Boston • • Back to top