TALKING TO YOUR CHILD ABOUT A LOVED ONE'S BREAST CANCER

H annah Ditto was 4 years old when her beloved grandmother,

illustration by judy tonelli brown Babcia, was diagnosed

with breast cancer.

Hannah's mother, Diane Kos-Ditto, a registered nurse in western Massachusetts, remembers, "Hannah knew there was something wrong when she saw me crying after I got off the phone with my mother and talking to my husband, Sean. She asked what was wrong, so I told her that Babcia had cancer in her breast (I really said 'boobies')."

Hannah knew that her great-grandmother had died of brain cancer, so she asked if Babcia was going to die too.

Kos-Ditto explained, "Right now Babcia does not look or feel sick, but the doctors are going to try to take the cancer out and then give her medicine to try to kill the cancer. If they don't, then the cancer can move from her boobie to another part of her body, and that could make her really sick."

Hannah visited with her grandmother when she had her chemotherapy.

"I told Hannah ahead of time that Babcia would not have any hair or eyebrows and that she might look a little bit scary," says Kos-Ditto. "I explained that it was from the medicine killing all the cancer in her body while at the same time making her lose her hair and feel very sick and tired."

To involve Hannah, mother and daughter bought pretty scarves and head wraps for Babcia. Hannah also played cards, board games, and other quiet activities with her grandmother until Babcia had the energy to do more.

Because it was fall, Hannah made the analogy that Babcia's hair was like the leaves falling off the trees in the winter and would grow back in the spring. Sure enough, by late May/June, Babcia's hair did start to grow back.

Hannah said, "See I told you her hair was going to grow back."

What was surprising to Hannah was that her grandmother did not look or feel sick until she had the side effects from chemotherapy.

It was surprising to Kos-Ditto how much her daughter seemed to understand about the nature of the disease.

Experts say that children do take in more than parents might think about a loved one's cancer diagnosis. They recommend talking to children in an open age-appropriate way, being proactive so that you can address any fears or misconceptions your child may have.

Strategies for Talking

to Your Child

About Breast Cancer

Dr. Cindy Moore, staff child psychologist at Mass General in Boston, and Fran Prunier, a licensed pediatric social worker at UMass Memorial in Worcester, along with the American Cancer Society, provide these tips below for talking to children about your (or another family member's) breast cancer or another loved one's serious illness:

1. Start the Discussion

Many parents want to protect their child from thinking about cancer, observes Dr. Moore.

"We have many parents who want to talk very little about what is happening so that they don't make their child anxious and scared. However, communicating is protective in a sense. A parent can learn about the child's worries so that the child does not have to worry alone."

As you talk with your child, try to:

Avoid Euphemisms: "Parents might feel that they cannot say the word 'cancer' because they don't want to terrify the child. Some parents might say they have a 'boo-boo' on their breast," says Dr. Moore, "If you use a euphemism like that, it can be confusing to children. A child might think, 'I get boo-boos all of the time. Is this going to happen to me?' Using the name of the diagnosis allows the child to see that this is different."

Ask Your Child What He or She Knows: Ask your child to tell you what he knows or what he has heard about cancer before you talk about it, offers the American Cancer Society. This way you can clear up misconceptions and address any concerns up front.

Be Explicit and Proactive: "It is important to communicate with children and keep them in the loop so that they do not overhear things (kids are really good at that)," says Dr. Moore.

Watch for your Child's Cues: Children will tell you when they've had enough discussion, says Prunier. A child may get rambunctious or have to go to the bathroom. This is a cue that your child has had enough information for that time.

2. Include Children in the Process

Involving children in the cancer process will empower them, make them feel valued, and help them become part of the solution.

Parents can include children when they:

Tour the Hospital: "It's OK for the child to have a tour of the hospital and to meet the doctor," says Prunier, explaining that children's fantasies and reactions can be worse than the reality of the event. At the same time, he cautions against flooding children.

"Give them information gradually with a lot of support and sensitivity," he says.

Plan Weekly Family Meetings: Weekly family meetings can help to manage the anxiety that can build up over time. Families can share feelings and talk about anything that is bothering them. The American Cancer Society explains, "If you are expecting a difficult week ahead, you can prepare them by talking about what plans you have made to keep the wheels turning as normally as possible."

Dr. Moore elaborates, "Let your child know in advance who will be picking him up from school when you have a doctor's appointment scheduled."

You can also use the family meeting to clearly explain any upcoming side effects you may experience. For instance, "It is important to let children know that hair loss occurs because the medicine is working, not because the cancer is getting worse," says Dr. Moore.

Find New Ways to Spend Time Together: "Even though you can't do certain things, you might want to substitute some activities that won't take quite as much energy. Arrange times to be together to watch TV, read a book, make up a story, play a board game, or whatever else you can think of to spend time with your children. Children would rather you be present, even if a little tired, than not there at all," says the American Cancer Society.

Write Down Thankful Thoughts: Write down one good thing or one thing you are thankful for every day, suggests the American Cancer Society. "Doing this together with your children can be a great task to share," they say, "Sometimes, you may be so low you can't think of one positive thing to say. But your child may have five small things that have made his or her life fun or interesting. Their precious insights may help you appreciate each day even more."

3. Reassure a Child

Boston and Worcester offer some of the best cancer technology in the world, Prunier points out, information which can truly reassure a child.

Parents can also help soothe a child's fears when they:

Discuss the Causes of Cancer: "Be reassuring that nothing a child did caused the cancer," says Dr. Moore. "Sometimes older kids understand that stress can cause illness. It's nothing an older child did to make this happen."

Talk about Death: It takes real courage to talk about death with a child, explains the American Cancer Society. "Your willingness to go to a scary place is a priceless gift you can give your children. It is a gift much better given by you than by an adult who is not close to them."

According to Dr. Moore, most kids, especially younger ones, are wondering if a parent is going to die tomorrow or next week. "Kids are thinking short term. They are wondering if you are going to be there for Christmas. Parents can very honestly say that they are getting good care and that they are not planning on dying anytime soon."

Sometimes parents want to promise that they won't die, says Dr. Moore, or they may be tempted to say that anybody can die at anytime. Instead, she advises parents to keep a balance. "A mother fighting breast cancer can say to children, 'No one is worried about my dying. I am getting really good care and doing everything my doctors tell me. If that changes, I'll let you know.'"

Discuss a Child's Future: "Who will take care of me if something happens to you?" a child may wonder. This question must be addressed whether the child actually verbalizes it or not, says the American Cancer Society. Dealing with this question is probably one of the most painful experiences a parent can have.

It's crucial to let a child know that even though the cancer may change everything in the family, he or she will still be taken care of and that someone will always be there to love them.

4. Keep the Routine:

Dr. Moore and the Parenting At a Challenging Time (PACT) group at Mass General encourages parents to mobilize their support system in keeping kids' routines as normal as possible.

Parents may want to:

Cut Down an Activity: It may be better to cut out an activity, suggests Dr. Moore, so that children can do one activity well rather than experience the stress of missing practices.

Get Consistent Help: "If you can, try to limit the amount of people coming through to help," says Dr. Moore. Adults tend to want to minimize using the same person all of the time, she explains, but it's more comforting for a child to keep the routine of using one person for rides or errands.

Make Time for Friends: Dr. Moore reminds parents that "The peer group is so important for teens, and being connected will really help teens cope with stress. While there may be a lot to do at home, it is important for a teen's development to have time with friends."

Get Help For You and Your Child: There is a range of reactions common for kids dealing with a loved one's cancer, says Dr. Moore. Generally she asks parents about how kids are functioning at home, in school, and with peers.

"If we hear about disruptions in two or more areas lasting more than a few weeks, then that is a red flag and the point in which you should talk with your child's pediatrician or guidance counselor," says Dr. Moore.

Prunier reminds us that a child cannot always express himself with words. "Look at a child's body language. If you do see unexpected things, talk to your child and make the decision if you have to bring in more help."

He advises parents to particularly watch a child at night, a time when anxiety surfaces. "It's very common to have sleep disturbances," he says.

If you do see signs of stress in your child, reach out to:

Hospitals: Each cancer clinic has social workers to help children cope, says Prunier. Nurses and doctors go over tips with patients about how to handle children.

Counseling and Psychotherapy: "It's OK to get help during a time like this because it can be so stressful," says Prunier. Most clinics offer short-term and on the-moment counseling.

Other Parents: Most moms say that they hate asking for help, explains Dr. Moore, who works with parents to help figure out how to talk with the parents of their children's friends. A parent might offer assistance buying school supplies so that a patient does not have to expend energy on that chore.

Luckily, there is a lot of support available for parents to help their children deal with the affects of breast cancer in their lives. While doctors often discourage patients from searching the confusing, and often inaccurate Internet for medical advice, Prunier finds there is a lot of solid material on the Web when it comes to cancer support.

And parents can take comfort: what the Web can't offer, the best and the brightest cancer professionals in Boston and Worcester will.

Carrie Wattu is Calendar Editor and a contributing writer for Bay State Parent.

RESOURCES

Programs

•The Marjorie Korff Parenting At a Challenging Time (PACT) Program at Mass General, Boston is for parents dealing with challenges of cancer. Dr. Cindy Moore says, "We are a team of clinicians who feel that parents need the same expert care for facing parenting concerns as well as their medical concerns." Their Web site has some easy-to-read information about talking to children about cancer: www.mghpact.org.

•The Wellness Community of Greater Boston is part of an international nonprofit organization dedicated to providing free support, education and hope to people with cancer and their loved ones. Visit www.wellnesscommunity.org for more information.

Books

•Raising an Emotionally Healthy Child When a Parent is Sick by Dr. Paula Rauch and Dr.Anna Muriel

•When a Parent Has Cancer, A Guide to Caring for your Children by Wendy Schlessel Harpham

•How to Help Children Through a Parent's Serious Illness by Kathleen McCue

•Hurricane Voices is a not-for-profit organization advancing the rebellion against breast cancer. They offer an excellent annotated family reading list of books on the topic of breast cancer for children of all ages. www.hurricanevoices.org

Web Sites

•www.breastcancer.org, offers a wealth of information to help children cope with a loved one's cancer.

•www.cancer.org/docroot/CRI/content/ CRI_2_6X_PsychosocialIssues_ ofChildren_With_CancerIn_The_ Family_DealingWith_Recurrenceor ProgressiveIllness.asp), addresses the top questions parents ask about talking with their children about cancer.