The author and her daughter. (Terri Rupar)

“I can’t imagine going through that with a child that age,” we tell each other, us moms with cancer who legitimately can’t imagine it. Every parent, every kid, every cancer is so different. And we don’t want to imagine it — how do you tell your 5-year-old? How do you know what your teenager is thinking?

My husband and I feel like we don’t have it too hard, as these things go. Matilda is 15 months old, so we don’t have to worry about what to tell her about my diagnosis of Hodgkin’s lymphoma. She keeps moving, a toddler bent on destruction, unaware that mama is extra tired and both parents more stressed.

But what would we tell her? Most of the results from a quick search for “kids and cancer” or “parents and cancer” is about the even harder-to-imagine situation of having a kid with cancer. People are working to help fill in blanks, to answer parents’ questions when one has cancer diagnosed. Here’s a look at advice from experts and parents, as well as resources to get more help:

Be honest. “Tell them, as least as long as they’re old enough to understand. Tell them, don’t lie to them, but give them age-appropriate information,” said Jen Singer, a writer and mother of two who was diagnosed with non-Hodgkin’s lymphoma in 2007. Four years later, she launched a site aimed at providing resources for parents in similar situations.

Singer used the word “cancer” and showed her kids, 8 and 10 years old at the time, her X-ray. She told them the medicine would make the blob shrink down — and make her hair fall out.

Iris Cohen Fineberg, president of the Association of Oncology Social Work, said that trying to protect your children by keeping the problem from them isn’t the best approach. You’re building a relationship with your child every day, she said, so build trust.

“They sense tension, they sense fear, they sense anxiety, but if they don’t have anyone communicating about that, then they’re sensing it but they don’t know what to make of it, which can be scary, too,” she said. And if they find out from someone else, that can break their trust in their parents.

Don’t make promises you can’t keep. You can say you believe everything is going to be okay and detail what you’re doing to take care of yourself, but don’t make a definitive statement that everything will be fine if you’re not sure it’s true. Do talk about the great doctors and treatment you’re getting, Fineberg said.

“Pointing out all the things that are helping to make it fine, that gives them some material to work with,” she said.

Use the right words. “Cancer” isn’t necessarily the scary word for them that it can be for us, said Claudia Califano, a child and adolescent psychiatrist and professor at Yale University’s Child Study Center. She works at Smilow Cancer Hospital with a program called Parenting at a Challenging Time, which provides help to parents who are diagnosed with cancer.

Don’t call your cancer a “booboo.” Euphemisms can confuse younger kids, making them worry when they scrape their knee that they’ll lose their hair or get really sick.

Adjust to the child. Califano advised thinking about where a child is developmentally as well as how each child communicates. Some will have lots of questions immediately, while others will want to sit quietly with the information for a while. It’s helpful to think about where children communicate best, Califano said — some prefer bedtime, others when driving in the car.

“Most children don’t sort of sit down and chat at the dining table like adults do,” she said. “They’ve got different ways of doing it.”

Some will respond with changes in behavior — difficulty sleeping, or more fears or separation anxiety. She coaches parents to pay attention to how their kids are reacting and to trust themselves.

“Our view is that generally, the parents are the best. You guys are the ones to do this and the people that are closest to the child,” she said. “We work with parents to say you’ve got intrinsic strength that maybe you don’t know yet.”

Get the right help. A good place to start is a social worker — they can help with logistical challenges like getting a discount at the parking garage and deeper ones like talking to your child.

“It doesn’t need to be because you’re in particular distress or because you don’t have a support system — that’s not the case at all,” said Fineberg of the social worker association. “Social workers are very much trained in communication, they’re trained to think in family systems, they’re trained to think very holistically and to think about the environment that you are having to manage your situation in.”

Some more resources:

Advice from the American Cancer Society: “Helping Children when a Family Member Has Cancer
This also has printable handouts with advice on topics like dealing with diagnosis and treatment.

Yale’s Parenting at a Challenging Time has a list of age-specific tips, as well as a book list and more resources.

Massachusetts General Hospital’s Parenting at a Challenging Time program lists a dozen lessons learned.

Jen Singer started Parenting With Cancer, with her personal story and those of other parents, as well as lists of resources.

Camp Kesem is a program for kids whose parents have cancer.

Books:
When a Parent Has Cancer
Raising an Emotionally Healthy Child When a Parent Is Sick
Children’s activity book “Talking with My Treehouse Friends about Cancer

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I’m a mom with cancer. Now what?

I was tough, and then my daughter was born

I’m trying to be okay with accepting help

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