Ask CancerCare

Julia Little, LMSW

March 2009

This Month's Topic: Helping Children Cope with Cancer

Featured Expert: Julia Little, LMSW, CancerCare

Q. Are there any books written especially for children that can help them understand and cope with a parent's cancer diagnosis?

A. After talking to your child about a cancer diagnosis, books can be a helpful follow-up to encourage learning more about cancer, exploring feelings and asking questions. It can also be a nice opportunity to spend quiet time together or give your child some autonomy to learn independently. There are different books available for different age groups and developmental stages. It is important to choose books that are appropriate for your child by not only looking at the recommended age on the book, but also previewing any materials you share with them. In addition to CancerCare's educational materials, the American Cancer Society offers wonderful materials for children including:

Kids Konnected also has some great resources for children and teens, including:

KidsCope has a free downloadable comic book called Kemo Shark to help kids understand cancer and chemotherapy.

The National Cancer Institute has excellent free booklets to help teens cope with cancer:

They can also be ordered by phone by 1-800-4-CANCER.

If you choose to share books with your child about cancer, be sure to check in with them to see if they have questions about what they read or if they want to talk about it.

CancerCare's Children's Program social workers are available to help you discuss choosing specific books for your child, or processing your child's response to them once they are given. Contact us to discuss further at 1-800-813-HOPE (4673).

Q. My daughter is having separation anxiety now that she knows about my cancer. She also wakes me up every night saying she is scared. She won't go to sleep without me. Any suggestions?

A. Children who have a parent with cancer often experience separation anxiety, particularly with the parent who is the patient. They may be reluctant to go to school or to a friend's house, or they may be afraid when a parent has to leave them to go to the doctor or even on an errand. Because fear is often driven by the unknown, it is important to make sure your children know about your cancer and how you will be cared for to give them as much peace of mind as possible. In addition, when you leave the house to go somewhere, tell your children where you are going and when you expect to return. Leave a contact number where they can reach you in case of emergency. By including your children in your cancer experience and daily routine, they have some control and participation, and may feel less helpless.

It's common for children's fears to come out at bedtime. They may feel more emotional because they are tired; or the natural separation of going into their own bedroom may trigger the panic of being apart from a parent or caregiver. It can be helpful to set up a bedtime routine for your daughter that is comforting, such as listening to music, reading a story, or talking. Spending peaceful time with her before she falls asleep will help her relax and feel safe. It is also important for children developmentally to learn to self-soothe. Teach your child techniques she can try should she wake up during the night, such as reading to herself or listening to a recorded story in your voice. Reinforce that you are safe in bed nearby. Establishing routines and communicating with her about your cancer should help alleviate some of her fears.

For more information about communicating with children about a cancer diagnosis, read CancerCare's Helping Children When a Family Member Has Cancer PDF. The American Cancer Society also has a helpful guide, Helping Children When A Family Member Has Cancer: Dealing With Diagnosis.

You might also want to seek counseling for your daughter so that she can express and work through her fears. CancerCare's staff of professional oncology social workers includes specialists in children's issues surrounding a cancer diagnosis of a parent, sibling or other loved one. To speak with a social worker, call us at 1-800-813-HOPE (4673) or email info@cancercare.org.

Q. My 7 year old daughter is sure she did something to cause my cancer. What can I say to her to convince her otherwise?

A. It's normal and expected for children to fear they have somehow caused a parent's cancer. When children don't understand something they sometimes use "magical thinking"—the belief that one can bring about an event by thinking about it or wishing for it. By continuing to think she caused your cancer, your daughter is likely telling you she loves you, is afraid, and has no other explanation other than she must have done something to cause it.

You have already taken the first step to help your daughter, which is to take her concerns seriously. The next step is to plan a conversation with her addressing her feelings and providing accurate information. Simply telling your daughter that she didn't cause your cancer is not enough—you need to give her an explanation that she can understand.

Pick a quiet time when you and your daughter will not be rushed or interrupted, and sit next to her or hold her hand so she feels safe. It is important to praise your daughter for talking to you about her thoughts and feelings and encourage her to continue. You can also let her know that many children worry that they caused their parent's cancer, but it's not actually possible. Our Connect® booklet, Helping Children When a Family Member Has Cancer, offers suggestions on what you might say to your child including:

"Mommy (or Daddy) is sick with an illness called cancer. The cancer happened on its own—nobody did anything to make it happen. I have very good doctors, and I am going to do everything possible to get better."

Your daughter may accept this explanation, or may want more concrete information. Depending on her level of maturity and interest, you may use books or the internet to help her learn more about your cancer. Be careful to preview any materials or websites before sharing them with her.

If you are interested in discussing further please call us at 1-800-813-HOPE (4673) to be connected with a social worker for individual support or learn more about our CancerCare for Kids® Program.

Monique Lilakos, LCSW

June 2007

This Month's Topic: Helping Children Cope with Cancer

Featured Expert: Moniqie Lilakos, LCSW, CancerCare

Q. My husband has stage IV esophageal cancer and his prognosis isn't good. My son is worried that he is going to die, but also wonders why his dad is so "crabby" and keeps yelling at him to clean up his room. How do I help my son understand what his father is going through?

A. Esophageal cancer presents a person with a sense of internal chaos in that the surgery alters the way a person eats, swallows and even sleeps. This may make him much more sensitive to the disorder or messiness around him, including your son's room. In addition, physical discomfort makes people irritable about just about anything. It may be too difficult for your husband to talk to him right now but you can reassure your son by letting him know that his dad is going to the doctor, taking his medicine and doing his best to get better. Esophageal cancer almost always causes a great deal of weight loss, which can be scary for children and may also be causing your son's concerns about death. You can explain how you and the doctor are helping to keep dad strong. Be specific about what is being done to help dad nutritionally. Here are other things you can do:

You may also find helpful tips in the book, How to Help Children Through a Parent's Serious Illness, by Kathleen McCue (St. Martin's Press, NY).

For more information about coping with advanced cancer, please see the section on our website, When You or Your Loved One Has Advanced Cancer. You can also find out more about communicating with your son at CancerCare for Kids, or by calling us at 1-800-813-HOPE (4673) to speak with an oncology social worker.

Q. My 6-year-old son is getting treatment for leukemia. He is getting so much attention right now that his older brother is feeling left out. What can I do?

A. When a child is diagnosed with cancer, it's a frightening time for the whole family. Unfortunately, it's not uncommon for siblings to feel like their needs are being neglected. They may feel jealous, angry, frightened, or have other strong emotions. As a parent, you naturally want to feel like you are available to all of your children.

Here are some tips for helping siblings manage this difficult time:

The key is not to expect that siblings will just “get over” these feelings with time. In order to maintain their strength, courage and hope, they need your love and support more than ever.

The following books may be a useful resource when working with children who have a sibling with cancer:

You can also visit the SuperSibs! website at http://www.supersibs.org/ for more information on this topic.

Q. Last week I told my son that I had cancer and we have barely spoken about it since.  What can I do to help support my son through this experience?

A. Naturally as a caring parent you want to help your son understand what you are going through. Children want the facts and what it means to them and their lives – and may often bring up the topic when you least expect it. How and when – as well as how you respond -- will depend on his age and stage of development.

If your son is under 5, he is likely to ask you a question or bring up your cancer when he is most closely engaged with you one on one. His questions will probably be brief and concrete, such as: What does your cancer look like? Does the medicine taste bad? Your answers should be brief, factual and in words he understands.

Children ages 6-11 typically are more interested in the mechanics of treatment. The “killing” of cancer cells and seeing your treatment as a “battle” or “fight” -- whether or not you yourself use these images -- is very likely how your son will think of your experiencer. Some parents are comfortable using this language; others may choose to describe their experience using non-violent imagery. Either way is okay.

If your son is a teenager, he will be wrestling with a variety of conflicting thoughts and feelings. He will want to ask questions but think it is “babyish” to be worried about you. He may feel sad about the situation but think it is “unmanly” to have that feeling. He will be certain that none of this “shows” at all but you will see it clearly in his face and demeanor. If you ask him questions he will invariably tell you that he is “fine.” Keep in mind that just because you have cancer, does not change the fact that you son is still a teenager.

No matter what age your son is, he will tell you when he is ready to talk. There may be times when you need to start the conversation because you are going to lose your hair, or need to rest more, or will be hospitalized. In these cases, be factual, brief, and use words you know your son will understand.

Here are some additional tips that may be useful when talking to your child about cancer:

For parents of young children, CancerCare offers a story book, In Mommy’s Garden that can help you talk to your children about cancer.  Another excellent guide is Helping your Children Cope with your Cancer by Peter Vandernoot (Hatherleigh Press, New York).

Q. I’ve been recently diagnosed and I’m not sure quite how to tell my kids. Is it ever a good idea to not to tell them?

A. Talking to your children about your cancer and how it will affect the family isn’t easy, but it is important and necessary for families to talk about it with each other. By talking to your children honestly and helping them express their feelings, you can make it easier for them to feel safe and secure.

Here are some basic tips on how to talk to your kids when you’ve been diagnosed with cancer:

While the discussion of cancer is serious, it is important to use a calm and reassuring voice with children, even if you become sad while talking. You can help them to see how you are trying to cope, which will help them feel okay with their own feelings about cancer.

You’ll find more tips in CancerCare's fact sheet, Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis. PDF And, visit CancerCare for Kids to find out more about CancerCare's free, professional services for children and parents.

 

Monique A. Lilakos, LCSW joined CancerCare in 2006 as Program Director of Children’s Services. She specializes in health and psychosocial issues involving families. She holds a master’s degree in Social Work from Fordham University and is currently pursuing her doctorate in Social Work at New York University.

The questions and answers listed above are from the June 2007 and March 2009 Ask CancerCare features. New Ask CancerCare topics are introduced every month. 

If you have additional questions about children's issues, please contact CancerCare directly for information and guidance. CancerCare provides free professional support services, including counseling, education, financial assistance and practical help. These services are provided by professional oncology social workers. If you have a specific concern or question and would like to speak with an oncology social worker, please contact us at info@cancercare.org or 1-800-813-HOPE (4673).

For questions about medical issues, please visit Cancer.net, the patient information website of the American Society of Clinical Oncology (ASCO).

Ask CancerCare Archive (questions and answers from previous months)

Cancer Types & Specific PopulationsEmotionalMedicalPractical