Ask CancerCare

June 2007 This Month's Topic: Children's Issues Featured Expert: Monique Lilakos, LCSW

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:

• Always reassure your son about how much you love him.
• If you husband is unable to talk with your son about his feelings, help him write a brief note using age-appropriate language; or draw a picture that tells your son how he feels about him.
• Let your son know that you will tell him what is happening so he can feel included and that he can ask you questions.
• Let your son know that no matter how messy his room gets, it has no effect on his dad’s cancer, because his behavior has no connection to his father’s illness. You may need to say this often and in different ways.
• If your son's room gets so messy that it overwhelms him, offer to help him clean it and find ways to stay organized.

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:

• Make time to talk to individual siblings. Ask them how they are doing, and take time to really listen to their response. This can make a world of difference.
• Invite siblings to join you in fun activities or outings. Siblings need to laugh, have fun, and be themselves, especially during this difficult time.
• Send fun emails or cards to siblings to let them know you are thinking of them.
• Encourage siblings to pick someone who will be a special support person for them. Then, help them connect with that person. Keep in mind that they may want you to be that person.
• If siblings are given extra responsibilities while their brother or sister is ill, help them with those chores. That will give them a chance to connect with you.

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:

• Life Isn't Always A Day At The Beach, by Pam Ganz
• What is Cancer, Anyway? Explaining Cancer to Children of All Ages, by Karen Carney
• Chemo Crusader and the Cancer Fighting Crew, by Melodie Homer

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:

• Let your child know that you love and care for them and that you are doing everything possible to win the cancer battle
• Let your child know that you are always available to answer their questions
• Ask your child if there are  aunts, uncles, school counselors or other professionals (social workers, psychologists) that they would like to talk to about how they are coping with the cancer
• Try to keep family time consistent
• Encourage family participation when preparing meals
• Find age-appropriate support groups for your children that will help them feel connected to other children who have a similar experience

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:

• Use understandable, age-appropriate language. Keep in mind that an eight-year-old will understand cancer differently than a teenager.
• Explain your treatment and any possible changes you may be facing, such as hair loss or being more tired than usual. Reassure them that their needs will be taken care of despite these changes.
• Let your children ask questions and answer them as accurately as possible. If you don’t know the answer, be honest and tell them you will try to find out.
• Let your children know that it’s okay to express their feelings, and who they can turn to for support.
• Write down or practice beforehand what you would like to say to your children; couples may find it helpful to talk to their children together.
• Choose a quiet time when your children are rested to help make the discussion less stressful.

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. 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 Ask CancerCare feature.  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).