Written by Bridget Shirvell
Reviewed for Medical Accuracy by Micheal Guerrera
As the mother of a 2-year-old, the beautiful everyday chaos of toddlerhood fills most days: setting up a drawing station for my daughter to scribble with her crayons while I work; making mac and cheese; picking up building blocks; taking a walk to pet the goats at the farm near our house; squeezing in a bit more work as she spills the building blocks all over the floor again.
There isn't time to think about my neuroendocrine cancer—until a news headline or a doctor appointment text reminder or a body twinge in an odd place focuses my thoughts on my disease.
At 2, my daughter isn't capable of understanding colds, let alone cancer. But while my cancer was thankfully caught early and is highly treatable, it still means at least 10 years of MRIs and other tests. Eventually, I know she'll ask about these. Parents with cancer are superheroes, often doing what they have to do to get through the day, even while undergoing treatment. It's tempting to hide this illness from our children—we want the world to be perfect for them—they don’t just need to know. They deserve to know.
"You can't hide life from your kids, and you really shouldn't try,” says author, parent, and two-time brain cancer survivor Kristina Schnack Kotlus. “You're teaching them how to live, be grown-ups, and face scary things. It's more important they see you doing that than see you eating broccoli on the regular, in my opinion.”
It’s beyond tough to talk to your child about cancer, especially when you're the one suffering from it. Still, age-appropriate honesty is essential so they can understand your current health and the treatment you’re going through. We’ll show here some ways of how to explain cancer to a child.
How to broach the topic
"My best advice for parents when talking to their children is to give a basic group message so that everyone is on the same page, but then to honor their children's personalities when being more specific," says Schnack Kotlus.
Schnack Kotlus and her husband sat their kids down for a general family meeting. At the time, her kids were 4, 6, and 9 years old, so they talked about how their momma had something growing in her brain that shouldn't be there, how it had to come out, and that she would be sick and tired for a long time.
Explaining how you’re going to feel is essential, as kids need to understand how a parent’s cancer will affect their lives and routines.
"If you are getting treatment, maybe ask them to join you for one of your sessions so that they can see what you are doing and can get used to it,” says Dr. Giuseppe Aragona, general practitioner and family doctor at Prescription Doctor, who has given patients advice on talking with their children about their illness. “Stay hopeful, as with time and medication, a lot of people do get better—but just make sure that you spend your time wisely and fill it with fun.”
Make sure to emphasize to your kids that your illness isn't their fault—or yours.
How to keep it age-specific
What you should share and how you share it depends largely on the ages and personalities of your kids. Sara Olsher was diagnosed with cancer at the age of 34 when her daughter was 7, and while she found a lot of books for kids on cancer, she didn't feel like any of them explained the science in an age-appropriate way.
"I ended up giving her a very basic overview of how the body works: Basically, your whole body is made up of cells, which are sort of like building blocks that are so tiny you can't see,” Olsher explained. “They are very cool, because they can make more cells anytime they want, and each cell has a job, etc. … I could then use that scientific explanation to explain what my treatments were and how they'd make me feel.”
Bright Spot Network's co-founder and Executive Director, Haley Pollack, had 2 kids when she was diagnosed with Stage III colon cancer. Her young kids were only six months and three years old.
"With my baby, I knew that I needed to talk to her. Even if she didn't understand my words, it really helped me to tell her what was happening and that I loved her," shared Haley.
"With my older daughter, we talked a lot about how chemotherapy would affect me or how she would need to be a big helper when I was recovering from surgery. I encouraged her to play it out! She was a doctor to her dolls, to her stuffed animals, and of course, to me."
Playing is a good way for kids to process big things that they may not otherwise have the language to work through.
It's not just one conversation
Just as your treatment isn’t a one-time thing, neither is the process of how to explain cancer to a child. Be prepared for them to continue to have questions, fears and other emotional responses throughout the course of your illness and even long after you’re well.
"Oddly enough, that first conversation went far better than I would have expected," said Olsher. “She wanted to know that I wasn't going to die, and once the answer was 'no, I caught the broken cell early,' she went on her way. The issues came when treatment seemed to last forever, and our lives got very chaotic because different people were dropping her off and picking her up from school, and I was too exhausted from chemo to think of ways for us to connect."
Olsher suggests following up on the conversation repeatedly and using visual aids when possible.
How to help your children deal with your illness
While there have been days I’ve envied my siblings’ ability to play with my daughter when I’m too tired to join in, I’m forever grateful for the relationship she’s building with them at such a young age.
You should help your kids build a support system of trusted friends and adults—whether it’s family members, teachers, or their friends’ parents—that they can lean on when needed.
"We tried to anticipate some of the things we thought would upset the kids and deal with them before they became huge issues,” Schnack Kotlus said. “My middle child twirled my hair around his finger for comfort, so I kept a long lock of it for him, and it's still in his bedside table drawer five years later.”
Shnack Kotlus also recommended being wary of certain adults surrounding your children who may not be tactful about the situation. “We failed to anticipate how completely idiotic the adults surrounding our children could be,” she emphasized, adding as a general rule for all adults that “if you know a child is in the middle of a crisis, do not ask the child for information.”
But, since many people fail to heed that rule, Schnack Kotlus prepared her children by giving them permission to be terse if they needed to be. “If an adult asked them a question they didn’t want to answer, they had our permission to say, ‘You can ask my ‘fill in the blank with grandma/dad/whatever adult,’” she said. “If the adult continued to question them—and yes, that happened—they had our permission to say, ‘You’re making me uncomfortable, and I don’t want to talk to you,’ and walk away.”
Be gentle with yourself and with your kids, and remember: It’s OK to not be OK.