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How to talk to children about cancer

Stay honest but age-appropriate when telling youngsters about your diagnosis

By Scott Hewitt, Columbian staff writer

Published: October 11, 2020, 5:21am

Surgeon and cancer survivor Nathalie Johnson is the author of several books about cancer for children of different ages, including Mommy Found A Lump and Understanding Breast Cancer for the Young Adult.

Figuring out what’s really up with your parents is child’s play. Just check their text messages or eavesdrop on a phone call. That’s what one child whispered during a support group hosted by oncology social worker Krista Nelson at Portland’s Providence Cancer Institute.

“I’m always amazed at how much kids really do know about what’s going on,” Nelson said. “Even when their parents don’t tell them.”

That’s why it’s important to be real with children when it comes to news as important as a family cancer diagnosis. If you don’t tell your children, they’ll likely either sniff it out themselves, or even make up their own facts and explanations about the big mystery at hand.

“Parents are afraid it’s going to be very hard on the children and they don’t want to share,” said surgeon and author Nathalie Johnson of Legacy Cancer Institute and Legacy Breast Health Centers. “But children sense the stress in the home, and their imagination can take them to far darker places than reality often is.”

Book Bank

Clark County’s Pink Lemonade Project is working to relaunch its in-house clearinghouse of books for children and families. Jill’s Book Bank, named for benefactor Jill Garrow, was just starting to distribute books to families and social workers when the coronavirus pandemic interrupted that practice. Now, Pink Lemonade is exploring noncontact ways to get those materials into people’s hands like sending them through the mail. Take a look at the book catalog at www.pinklemonadeproject.org/jills-book-bank.

COMMUNICATING WITH KIDS ABOUT CANCER

Adapted from Providence Cancer Center’s “Cancer: A Family Affair” handout

Establish open communication

Be truthful, open and direct. This will develop trust and reduce fear in children.

Encourage questions. If you don’t know the answer, tell them you’ll try to find out.

Questions and fears about death are normal. Don’t make a promise you can’t keep, but keep reassuring children that you’re willing to talk about their fears.

Children may respond in different ways. Some may cling or want to help; others may want to make space and spend more time with friends. Allow for individual differences in your children.

If children behave or speak in ways that may be harmful to self or others, get help.

Understand developmental needs

Keep age in mind. Younger children need simple but truthful information. Older children can handle more.

Children engage in “magical thinking,” believing the world revolves around them. Be sure to tell them that nothing they did caused the cancer and that cancer is not contagious.

Children’s behavior shows their feelings. They often act out rather than finding words.

Children’s behavior may regress. That’s a natural reaction to stress. Try to respond in a supportive way.

Balance care and concern

Try to maintain structure and routines at home. Give children opportunities to perform age-appropriate caregiving tasks each day.

Include children in medical aspects of your life, as appropriate. Children may want to meet your physician or see where you go for treatment.

Children take cues from adults. The way children react often depends on how their parents and other close adults handle the situation.

Communicating with teachers about the diagnosis can help them support your children. It’s helpful to have other trusted adults in a child’s life.

Take care of yourself

Express your feelings. It’s OK for children to see you cry. Explain how you are feeling and show them you can cope. Tell them it is not their responsibility to help you feel better.

It’s not your job to protect children from every challenge, but to show them how to cope with challenges that arise.

Take time for yourself! You’ll be a better parent if you take care of your own needs. Invest time and care in you.

Young children might blame their own misbehavior, or worry that cancer is “catching.” Adolescent girls may start wondering about their own risk. And, naturally, everyone will worry about the very worst.

“A new cancer diagnosis is a scary and uncertain time for the whole family,” said Susan Stearns of Clark County’s Pink Lemonade Project.

“We usually suggest that parents are honest with their children in an age-appropriate way,” Johnson said.

Fortunately, the overall news about breast cancer is appropriate for any age: “There’s a 99 percent cure rate at this point,” Stearns said. (Other cancers are “trickier,” she added.)

But parents and children still have a lot to discuss.

“It’s a time to teach children how to manage when life isn’t perfect,” Johnson said. “One of the things my mom taught me is, we may want to shield children from adversity but we should be giving children tools to deal with it. We all have adversity in our lives.”

Nelson’s family support groups at Providence have been suspended because of the coronavirus pandemic, but when they’re in full swing, kids split into age groups and use different therapist-led techniques to explore their feelings about having a parent with cancer. The littler ones draw pictures and learn to name emotions. Older ones who already have the vocabulary share hopes and fears.

Parents have their own group too, and they use some of the same tools and methods — including passing around a papier-mache mask that symbolizes the problem of showing the world your game face while hiding your real feelings.

“There can be such a sense of isolation,” Nelson said. “But now, my gosh, here’s this giant room with all these people talking about cancer. You’re not alone.”

Reading stories

Johnson, who is both a cancer surgeon and a cancer survivor, said a children’s book was the best way she could think of to help parents broach the subject of their diagnosis. Reading stories about peers facing similar problems is an ideal way for children absorb new information and explore difficult feelings, she said.

As she wrote, Johnson enlisted her own 7-year-old daughter to help keep things age-appropriate. Her husband and son contributed too. The result was “Mommy Found a Lump,” a picture book that conveys a bit of basic medical information, but mostly focuses on what the treatment process may be like for the family.

She also wrote a book for older children, “Understanding Breast Cancer for the Young Adult.” Both books are available via LuLu Publishing.

Regardless of intense emotions, household changes and an uncertain future, here’s what children of every age want to hear, according to all these experts: You will be OK. I will make sure that you are always cared for and loved.

“If Mom has been diagnosed in a metastatic state, it might be possible for kids to understand and appreciate the time they have left,” Johnson said. “Kids handle things a lot better when they’re informed.”

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