In May 2016, I participated in an awake craniotomy to remove a large primary tumor from my brain. Two weeks later, my neuro-oncologist shared my diagnosis: I had an aggressive brain cancer—glioblastoma. My wife and I were shocked and devastated. I was 34 years old; we were working full time and raising three boys ages 5 and younger. Our youngest was only 8 months old.
Talking about cancer with young children is challenging in any situation, but for cancer with no available curative therapy, helpful resources for parents are especially sparse. For brain cancer, the difficulty is compounded by possible neurological deficits in the parent and a poor prognosis. Further, the median age for a glioblastoma diagnosis is 64. My relative youth and our kids’ ages presented unusual circumstances.
For several months, my wife and I felt comfortable answering our kids’ questions with honest, age-appropriate replies, without going into the fullest detail. We did not see an immediate benefit to introducing the word “cancer” to them. Instead, we limited our discussions to what the boys could see: my surgical scar and walking cane, for example.
Our timeline for proactive dialogue, including dropping the “big C,” was accelerated in June 2016 for the best possible reason: Our oldest, Isaac, then 6, was accepted for a weeklong summer camp to support kids “through and beyond a parent’s cancer.” To prepare for having “the talk” about my cancer diagnosis before sending Isaac off to camp, I sought resources. As I thumbed the pages of a children’s book telling the story of a superhero parent “fighting” cancer, I was struck by the description of cancer as something “mean” and of treatment as a way to “wipe it out.” This narrative introduces a theme familiar to children, good versus evil, pitting patients and doctors, the “good guys,” against cancer, the “bad guy.”
The “cancer warrior” motif is common in resources for talking about cancer. This approach may ease conversations in the short term, but I find it glosses over the nuances of a family’s journey with cancer. Further, in the case of life-limiting diagnoses and advanced cancers, the framework crumbles.
The portrait of a person living with cancer locked in a battle introduces a zero-sum game where there are only winners and losers. My surgery did not wipe out my cancer, yet I hope our kids do not strip me of my superhero status! Death is not the result of a person’s failure to fight hard. The medical team is not to be faulted for failing to wipe out my disease.
I am also uncomfortable with personifying cancer as a villain. I am living with glioblastoma. It is part of me. Cancer is aberrant biology that employs the well-honed machinery of cells to proliferate and infiltrate, but the biology of glioblastoma, aberrant or not, is part of my biology. When talking to kids about disease, we should harness their understanding of their bodies. Cancer is not a boogeyman lurking in the shadows, and kids should not fear something “mean” that could arise within them.
My kids visited me in the hospital shortly after surgery. Nearly 40 staples zipped closed my scalp. We openly discussed my surgery. Rather than hide the staples, we allowed the boys to examine and touch them and ask questions. I invited Isaac to tell me how we care for cuts, scrapes and skinned knees. We discussed bandages, scars and new skin. This conversation was relatable for kids because it drew from their own experience.
When it came time to describe cancer to Isaac, my wife and I followed the strategy of drawing from his experience. We asked him to tell us about growing up and changes taking place in his body. We explained that our bodies are made up of cells, and sometimes our bodies make too many. When there are too many cells, they may form a tumor. Our 6-year-old is familiar with this word, given my volunteer service to brain-tumor nonprofit organizations. With a little guidance, Isaac was able to make connections and understand the bigger picture of my surgery, the scar on my head, the words brain tumor and this new word, cancer.
With tears streaming down our faces, my wife and I shared a glance. Then I told Isaac that, because of this cancer, I would probably die when he and I were still young. I gestured toward a wall of family photographs. We talked about family members who were still living and others who were not, weeping without hiding our tears. We empowered Isaac to continue being my helper. (He practices “seizure drills” so he knows what to do if I lose consciousness.) We gave permission to Isaac to talk with his brothers if they had questions.
Our younger children were present for the conversation, but at ages 4 and 2, they were more interested in playing. Children 6 and older are eligible for the weeklong camp for children of parents with cancer, and Isaac will guide his brothers through the camp experience as they come of age. One of our boys may be a camp counselor to one of your children someday. Nothing would make me more proud.
I believe our children are better prepared to face future obstacles when we set aside euphemisms about disease in favor of candid language. Kids are perceptive and require more sophisticated communication than we may think. It is better to trust children to navigate nuance and uncertainty, surely when discussing life-limiting illness. Indeed, adopting this tack, we all may learn together.
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