Explaining Cancer to Young Children

Following my surgery to remove the tumor in my liver, I spent a few days in a recovery room of the hospital. I was overjoyed when my wife and four kids came in to visit me. There were joyful screams of "Daddy!", constant chatter, and lots of big reunion hugs, which I'm sure caused quite a commotion on the otherwise silent cancer floor. My youngest daughter, however, was notably quiet. She had recently been hospitalized for a week at this very same hospital, and the sights and sounds of the ward were stirring up traumatic memories of being bedridden, poked, and prodded by nurses and doctors.

My three-year-old daughter stared at me, my chest electrodes, IV line, and hospital bed, quietly processing what was going on with her daddy. During much of the visit, she didn't talk, but opted to stand near my bed.

Towards the end of their visit, she looked up at me and asked "Daddy, are you scared?"

My initial reaction was to say "no" in order to reassure her (and the rest of my children and, well, maybe myself) that I was still strong and therefore impervious to fear. However, something made me hesitate. I paused to think for a second, then replied,

"Yes, I'm really scared. But I'm trying to be brave too"

My words surprised me. It was an unexpected moment of honesty and vulnerability, but it felt like the right thing to say. She nodded understandingly, and seemed to be comforted by my response. When asked if she had been scared at the hospital too, she nodded. Had she also been brave? She nodded again.

Later, when visiting hours were over, she wanted me to come home with the rest of the family. We told her that I needed to stay at the hospital for a couple more days, which she didn't take well. She was tearful and cried for me as Erin took her and the rest of the kids back home. She didn't understand, and wanted desperately for her father to come home so that we could all be together again.

Fatherhood

Fatherhood is a challenging role. For me, it is the pinnacle of what it means to be a man - being able to move beyond handling personal needs to the point where one can provide for and take care of a family. With Erin's help, I put a roof over their heads, ensure that there is enough food to eat, protect them from harm, help them feel confident, support them during tough times, and let them curl up in the crook of my arm in bed when they are feeling sad or scared. If I have done my job correctly, they will hopefully grow up feeling confident in who they are, be increasingly curious about the world, and be brave enough to venture out into the world and take risks in pursuit of their goals.

The stereotypical father rarely shows weakness. They are the anchor of the family - tough, unfailing, and unflinching. Things don't impact them. They have the capacity to support others so well because they aren't bogged down with their own shit. A man who doesn't get stressed, anxious, or overwhelmed. They problem-solve, adapt, and work until the problem is fixed. They don't complain, or cry, or give up.

However, there's a problem with this expectation. Men actually do feel weak (a lot), and fail (often), and flinch (on occasion). We don't like to admit it, but things do impact us. We are impacted by our own shit whether or not we like to admit that it does. We do get stressed, anxious, and overwhelmed. We don't always have a brilliant solution to solve the problem in front of them. And we don't always have the capacity to adapt, and often a problem persists despite their best effort to fix it. Finally, in our attempts to be manly, we bury our stress and negative emotions down deep and hope that they stay there. They rarely do.

Modeling Emotional Intelligence

By failing to recognize and acknowledge our stressors and feelings (particularly the undesirable ones, such as shame, anxiety, and sadness), fathers are doing their young children a huge disservice. Our children miss out on the gift of modeling and learning needed to develop emotional intelligence. In contrast, when we talk openly about what we are feeling (presuming we actually know what's going on inside our head), something amazing happens. We provide our kids with a roadmap for how to grapple with their own emotions. We normalize the experience of having emotions (both good and bad), while modeling what to do to both directly address these feelings and navigate life's challenges in spite of these strong emotional responses.

The admission that I was scared was important not only to my daughter, but also to me. Like many others, I default to saying that I'm fine, which is how we have been socialized to respond when someone asks how you are doing. Heaven forbid that you respond "Not great" and launch into a lengthy screed about your life's hardships and setbacks. I desperately need to practice being emotionally vulnerable, which is the first step towards acknowledging my limitations as a flawed human being and allowing others in to pour their love onto me. This is deeply uncomfortable for me, but something that is getting easier with continued practice. I take solace in the fact that this act also gives my children permission to admit when they are not okay and to be comfortable sitting with vulnerability.

With my kindergartener and preschooler, conversations about cancer tend to be very different than the ones I have with my older children. For one, they're not really conversations. We don't sit down and have a long, coherent discussion about what's happening in my body and what the doctors are doing to save my life. Instead, there are random questions that pop up on occasion, or occasional references to cancer and medical treatment that appear in their pretend play. Information-seeking and discussions tend to be scattered across multiple interactions that span several days. This is the informational pacing that they need, so I don't try to rush things. Here's what I try to do:

Be Light, Honest, & Clear

I try to keep things really light in my explanations to ensure that they can digest what I'm dishing out. I explain things in the simplest terms possible and try to use analogies to help them make connections to things they already know. For example, I often compare cancer to a growing seed in the body (more on that below).

Embrace the Repetition

I often find that I am answering similar questions over time and revisiting topics that we have previously discussed. Unlike older children and adults, my young ones require bite-sized pieces of information that they can process and connect to their existing knowledge of cancer. An hour or day later, I might get some rendition of the same exact question (if not the same exact question). Patience is key here, as they are trying their best to understand things...

Explaining Cancer to My Young Children

Explaining cancer to young children can be very challenging. Early on, my little ones asked what exactly cancer was. I explained that our bodies are made up of millions and millions of teeny tiny cells that form our bones, organs, skin, and blood. These cells are living things that don't last forever, so they have to divide to create new cells as the old ones age. These cells have an instruction manual that tell them both how to do their job and when it is time to divide to make new cells.

Sometimes, however, the cells mutate (that is, they get messed up), stop following their instruction manual, and start dividing uncontrollably, like a machine that has gone haywire. Sometimes the body detects this and acts quickly to get rid of these problematic cells. Sometimes the body doesn't notice what is happening or can't stop it, and so these problematic cells remain. This is the start of cancer.

The Garden Analogy: Cancer kind of acts like a plant seed. It starts to grow larger and larger like a weed until it starts to crowd out the organ of the body where it is located, preventing that organ from doing its job. If the cancer grows big enough, it can start to spread little cancer cells to other parts of the body through the blood or other pathways, much like a dandelion flower's seeds can scatter and spread into the air when you blow on it. These seeds can then take root in other organs and start growing there. If the cancer tumor grows too large, it can cause an organ to become faulty or fail. If its a vital organ, this can cause someone to die.

Explaining Cancer Treatment to My Young Children

I was also quick to explain how doctors and scientists have worked hard to figure out how to kill cancer and remove it from the body.

Radiation: One option is radiation. Doctors initially used radiation to blast the tumor in my colon. I explained to my little ones that this is like using a magnifying glass to focus sunlight on a seed to heat it up and kill it. Daddy laid on this bed while this robot spun around me and blasted my cancer from all angles using invisible X-rays, like a sort of giant real-world video game. My little ones were excited about the thought of robots wielding laser guns to help me fight my cancer.

Surgery: I explained that another option is surgery. If surgery won't overly harm the organ where the cancer is living, a surgeon can go in and cut the tumor out. I explain that this is similar to pulling out a weed in a garden using a weedpuller. My kids were very excited about the fact that in both of my surgeries (colon and liver resections), the doctors used a robot to cut me open and take out my tumors. I think they imagined an android standing over me doing the surgery, or hundreds of nanobots crawling up my butt to do the dirty work (pun intended). Away, robots make cancer treatment seem really cool (which I also happen to think), so don't be surprised if my little ones want to be robot-controlling cancer fighters when they grow up.

Chemotherapy: Finally, there is chemotherapy. I explain that even when a cancer tumor is blasted with radiation and cut out with surgery, sometimes a few cancer cells escape (like on an escape pod from the spaceship). These cells can float around a while before finding a new home on a new planet (er, organ). This is what happened with my original colon cancer - a few cells escaped and found a new home on my liver. Following the gardening analogy, chemotherapy is like spraying the whole area with weed killer to kill off any microscopic cancer seeds that might be left. I explained to my little ones that chemo also attacks healthy cells in my body too, which can leave me feeling tired, foggy, and nauseous. I was clear with them that this doesn't mean that my cancer is getting worse, but quite the opposite - the chemo medicine is doing its job! My healthy cells regenerate much faster than the cancer cells, so the cancer cells tends to die off while the rest of my body is able to recover and bounce back.

Eating Cancer Salami

Kids say the darnest things. Recently, one afternoon when the family was eating cheese, salami, and crackers for happy hour, my six-year-old son offered me some salami. I politely declined and told him that my doctors did not want me eating that kind of meat anymore because of my cancer diagnosis. He thought for a few seconds, then asked "Wait, is there cancer in the salami? Is this cancer salami?!?!" A minor panic ensued.

We all laughed, and I assured him (and the rest of my kids) that, no, there was not cancer in the salami, but that certain foods can increase the risk of cancer appearing or coming back in the body. I told him that scientists conduct research in which they keep track of what people eat and who ends up developing cancer to try to make connections between their diets and cancer diagnoses. It was all about being aware about what we are eating.

Talking About Risk

The terms relative risk and odds ratios are meaningless to a 3- and 6-year old, so I tried to use analogies drawn from their own experiences. I pointed out that riding their bikes in our driveway was very safe because they are rarely any cars. I then explained that if we rode our bikes on a busy road like Cathedral Oaks, we would not be as safe because cars whizz by all the time and might hit us. I made it clear that this was not a guarantee that we would be hit by a car, but the risk of getting hit goes way up. I explained that this is the same thing with my health choices. Eating salami or drinking alcohol wouldn't mean for sure that I would get cancer again, but it would increase my risk of it coming back.

Living to Enjoy Life

Later, my young ones asked why I don't just stop doing all unhealthy things by eliminating all alcohol, sugar, meat, and fat from my diet, only eating vegetables, and exercising everyday. I told them that if I did, I would turn into a bunny rabbit and have to live in the back yard! I explained to them that the reason why daddy wanted to go through all the surgeries and treatments was so that I could enjoy a long, full life with them. When life is stripped away of good food and (occasional) cocktail with family and friends, it loses a lot of its magic. Social gatherings often center around celebratory food and drinks, and I didn't want to completely give up on what makes life actually worth living. For sure, I mostly eat vegetarian now and I've cut way back on my alcohol consumption, but I won't give up completely on these things.

To help them understand, I told them that we could opt to stay at home all the time and never get in a car or ride a bike to go places. Sure, we would be much safer and the risks would be minimal, but we would miss out on fun adventures and amazing vacations that would let us actually enjoy our lives.

As another analogy, I asked them to choose between being able to live for 1000 years without any toys, games, television, family trips, yummy food, summer camps, or videogames, or only living for 100 years with all of these fun things to do. They opted for the latter. Sure, you can live 10x longer, but without the fun, what would be the point?

Will I Get Cancer Too?

This was the toughest question to field. We carefully avoided saying no to this question, even though this would be the much easier response. Instead, we tell them that it is very rare for kids to get cancer, but that it sometimes happens. We explain that making healthy choices - eating well most of the time and getting lots of exercise - are the best ways to prevent cancer from happening. We also let them know that sometimes people can do all the right things and still get cancer. It's something that just happens. And when it does happen (to kids or adults), we have doctors, nurses, and scientists on our side to help us fight it. Finally, we told them that we want them to prioritize living boldly (while trying their best to be thoughtful about their life choices). In order words, we want them to live a big life, take the big risks, and not let fear hold them back. In other words, eat the salami. Just don't do it every day.

We must all accept some risk in pursuit of a life well-lived. I explained that taking some risks in life are okay, as long as we are being intentional and thoughtful most (okay, some) of the time. This seemed to resonate well with our little ones. Inevitably, they will be back tomorrow with the same questions. We will try to be ready for them...