Receiving a cancer diagnosis didn’t come as a complete surprise for Haley; her mother had passed away from breast cancer when Haley was 25, so she knew her family history put her at greater risk for the disease. What was surprising, however, was learning that she had not breast but colon cancer, and that it came as soon as it did — at age 37. Haley had given birth to her second child just six months earlier, and had first become a mother three years before. Her oncologist primarily concerned with eradicating the cancer, her pediatrician focused on the baby’s health, and her OB/GYN mostly out of the picture by that point, there was little crossover among her doctors, while many inter-related concerns existed in her body and mind. So Haley took to the internet to find information on how to wean her baby right away, learn how to talk to her children about her illness, and attempt to connect with others in a similar situation.
She didn’t find much, so an already terrifying experience also became alienating. Thankfully, what she didn’t find in one concise website, she did piece together from various sources and people like her acupuncturist and nutritionist. Her nutritionist also introduced Aimee, a fellow young adult living with cancer; in her case, while pregnant.
Haley and Aimee persisted, through cancer into survivorship, and in their shared quest to create a place for young cancer patients parenting small children to feel seen and understood, and to find the resources and community that they, specifically, need.
One of the questions they face most is “how do I talk to my kids about cancer?” Haley shared several insights into this important topic, and Bright Spot Network offers a full complement of resources that help parents continue these conversations.
Children can tell when something is off with their parents; they hear you speaking in hushed tones, notice your tears, and sense the stress of change. If not presented with the truth, they will make up a story that may be even worse than reality. It’s ok to start small, just start somewhere!
Use age appropriate language.
Give your children an idea of what’s coming up, without going into detail they don’t need, or making promises you may not be able to keep. And use the word ‘cancer’ to avoid kids getting it confused with other illnesses they may have (like allergies, COVID, a cold). Haley used language like “Mama has something called colon cancer, it’s like a big boo boo in her stomach. Doctors are going to take it out and I will need to stay in the hospital for a few days. The doctors and nurses will be taking great care of me. I’ll come home soon, but it will be hard for me to lift you up for a little while. Will you give me extra gentle snuggles when I come home?”
Remind your kids that they didn’t cause your cancer, and that they can’t catch it.
Again, we all make up stories – including kids! – so it’s best to be direct and let them know this is not their fault.
Be open to questions.
Your kids will have questions. Acknowledge the question, thank them for the question, be present for them, and do your best. If you can’t answer it or don’t know how, let your kids know that you will come back with an answer soon. Let them know they can come back with questions for you anytime.
Use books to start the conversation.
Books are a great way to start the conversation and it can take some of the pressure off. Books are also a great way to return to the conversation or to let your child know about a change in your care or disease progression. Check out the Bright Spot Network’s list of recommended reads, or sign up for Bright Reads to receive free age-appropriate books about dealing with big emotions, cancer and illness, and grief and loss.
Remember, it’s never too late to start talking.
You’re going to stumble over your words, and they’ll inevitably ask some questions you can’t answer right away. You may even wait longer than you meant to, to start the conversation. It’s ok to say, “I didn’t tell you about this before, and I wish I had.”
We are so grateful to Haley for this conversation, for her work to create Bright Spot Network, and for partnering with us on some upcoming initiatives. Stay tuned to our social media and be in touch with our Patient Navigators to get all the details about a Playground Playdate, a Healing Circle, and more — all designed for young adult cancer patients and survivors who are parents of young kids, too.