Dear Boys, a Letter about Kindness

Glioblastology, the Book

Welcome to Chapter Release Thursday on Glioblastology! Today’s chapter is going out to all subscribers because it feels very human, and I want to experience that with you. Thanks to everyone who continues to welcome my writing into your inbox, and most sincere thanks to those paying subscribers who support my work. For this week’s chapter, have a tissue ready, we talk to kids about cancer.

xx. <3 -a.

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Chapter 11. Dear boys, a Story about Kindness

During Spring 2018, my schedule ran away from me. I approached two years following my diagnosis date, and my speaking was in full swing. I was submitting proposals to conferences, and I was thrilled to share my story locally in classes and seminars. The positive feedback from these speaking engagements was affirming, but I was not as present for my family as I could have been during this period. In retrospect, these opportunities taught me a lot, and I developed lasting friendships, but the cost to my family was the price that I paid; that they paid. And it may have been too much.

Beginning in February and stretching into April, I would travel coast-to-coast, leaving the primary childcare responsibilities in Whitney’s capable hands. Though she joined for this first trip of 2018 when we traveled to Sacramento, California, to serve as stakeholders on a newly formed research program: The Brain Cancer Quality of Life Collaborative, a my travel continued and she needed to be at home, it became common for her to field a phone call while I struggled on the edge of a seizure at the airport or for a few minutes early in the morning when I grabbed hotel coffee before a full day of meetings.

In April, I traveled to Palo Alto, California, via San Francisco to Stanford University, where I joined two physicians to present a workshop on storytelling in medicine.

Mid-air on this trip across the country, I pulled out my journal and wrote this short letter to our boys. I do not write many things directly to our kids. Other families who face cancer and serious illness suggest to me that I should be more intentional in my writing, to leave notes, letters, and videos specifically for each child and for Whitney. This is not a practice, but it may be in the future. Consistent with my health, consistent with the narrative themes of this book, I am living while dying, but I am not dying today, and so I’ve put my shoulder to the wheel rather than glance in the rear view mirror. The messages I would leave behind are those I put into the world. I actively blog, post, write, and create social media videos for awareness, advocacy, education, and to create shared spaces of connection as an antidote to my time at home, which, as we read last week, can become lonely. On that point, after recovering the strength, medical stability, and stamina to take the reins on childcare and working from home to allow Whitney to return to her important work, the boys and I share our routines together, and it is difficult to gain the distance and perspective to embrace a reflective attitude that facilitates a legacy letter.

The kids are part of my creative process: Their heads pop up onto the screen of videos I record, their voices are heard in the gaps of podcast interviews, and they are always my audience—willingly or not—to talks that I practice while pacing around the living room. My makeshift desk is the kitchen table on the main floor of our modest home. Together we do homework, while dad writes, or the boys paint with watercolors beside me while I take notes to write a book review. They pop themselves onto the countertop while I prepare meals, and they transfer clothes from the washer to the dryer on laundry days.

There is rarely a day that passes, only when I am on the road or they have overnights, that I do not hug them, kiss them, scratch their backs for bed each night, or tell them how much they are loved on their way to and from school. Whitney’s great sacrifice to our family is her busy work schedule outside of the home to provide our primary income, medical benefits, and the leadership of a strong woman in the workplace who earns the respect of her peers and exercises compassion for those within her care.

The boys and I, the kids because of age and me because of disability, are together each day through a formative period in their young lives, and so, I trust the memories we make together to leave them with a sense of the love we share and the dream I have for their lives. It’s my dream that they get to know me one day, in my absence or not, by tracing the evolution of my thoughts, thinking, and writing, those things that I consider to be my life’s work, about illness, healing, and finding humanity in dark places. Still, it is no doubt a shortcoming of mine that I am better at communicating in a lecture hall than I am in one-on-one relationships.

The following letter is something that I wrote explicitly to them during a time when I was not very present. It is simple, with a clear message, that takes a snapshot in time to suggest what was on my mind amidst these medical conferences. The message is clear: Kindness is important, even more important than curative therapy. My time around the school of medicine campus exposed me to residency stories of young physicians who embraced their roles as healers enthusiastically, and yet, many of us were aware of the burgeoning literature discussing clinician burnout and moral injury. I was aware that the existential threat to my life as a person with advanced disease was similar to the threat to physicians who faced obstacles to patient care, and they defined medicine by common battle metaphors. Part of my healing came through the acceptance that I was not engaged in battle with cancer, but that I lived in the reality of human fragility, and that calls for kindness, not combat.

Like opening a time capsule, this letter is not profound, but it freezes a moment in time. I posted this letter on my personal blog on April 26, 2018. The boys were six, four, and two years old. Given their ages, we talked about my brain tumor as my “brain boo boo,” because this language made the diagnosis something concrete that allowed us to talk about on their terms.

Every so often, a parenting flash of brilliance arrives, and something totally unexpected falls out of your mouth. This is where brain boo boo came from. Our kids visited me in the hospital shortly after surgery. Nearly 40 staples zipped closed my scalp. We openly discussed my surgery, and rather than hide the staples, we allowed the boys to touch, examine, and ask questions. I invited our oldest to tell me how we care for cuts, scrapes, and skinned knees after falling off the bike. We discussed bandages, scabs, new skin, and scars.

“Know how your boo boos heal after you scrape your knee?” Daddy’s brain boo boo will heal on the outside like your cuts heal over time.

I think it was on that plane ride that it hit me, I wasn’t talking with our kids like I used to. I still struggle with this. I am often suspended between my family, my job, and this goddamn writing that I do. Feeling more or less futile, I took out my earbuds, rummaged around in my bag for a notebook, and I penned this letter.

Dear boys,

I am in seat 4C on an airplane called an Airbus 320! The pilots are steering us toward San Francisco, California. I am on a long plane ride, and I am thinking about you. I have not been home very much lately. I have not had much time to play when I have been home.

I ask people if I can visit their meetings to tell stories. Sometimes people invite me to come, without me asking, like when you are invited to a birthday party! Sometimes I see old friends, and sometimes I meet new friends. I am always very nervous when I meet new friends. When I get nervous, it makes me feel very dizzy. Isn't that strange? My brain boo boo makes me feel these strange ways.

Isaac, you know the most about my brain boo boo. You can tell your brothers about it if you want to.

It is very normal to feel nervous.

My hurt brain makes me feel dizzy and weak when I get very, very nervous. You don't have to worry about that. I take medicine that helps. Sometimes a hurt in one part of our body can make other parts feel hurt, too.

Noah, do you remember when you broke your arm? The doctor gave you a "robot arm"! Your arm was hurt, and that made you feel very sick and very tired. A hurt in your arm made other parts hurt, too! Because we need our brains to help all over our bodies, the brain boo boo I have makes me walk with a cane, and I get very weak sometimes, and I also feel very dizzy when I get nervous or really tired.

I am on the airplane to go to California and tell a story! When I tell a story to new friends, I usually talk about kindness. I like stories that teach people new things or sometimes old things that maybe they forgot. Talking about kindness is one of the most important things that I talk about.

I thought about this earlier, and I thought that I have not been very kind to each of you. I am very sorry for not being kind. I have not made very much time to play when I have been home. It is important we treat others in the ways we think are most important. I think being kind is the most important thing.

I am telling stories to new friends this week. Some of my new friends have hurt bodies like me. Other friends are helpers for people with hurt bodies. Some of the helpers are doctors. Many of us are both! We have hurt bodies, and we are also helpers! You can be a helper even if you have a hurt body! That's important to remember!

When a helper spends time with people who are hurt or sick, the helpers may think fixing the hurt body is most important. Sometimes the helpers think if they cannot fix a hurt body, then the helper did not do a good job. The helpers may start to feel sad. Feeling sad is ok, like being nervous, but we shouldn't always feel that way.

Boys, sometimes a hurt body cannot be fixed. But that does not mean we should be angry. It does not mean the helper did a bad job. Remember what I think is most important? Kindness.

Sometimes being kind makes someone feel better than even fixing a hurt body. That is the story I am going to tell my new friends. The helper that daddy knows who tried to fix my brain boo boo couldn't fix it all the way, but he was very kind. I'm going to talk to my new friends about how kind he is. I'll remind the helpers especially that I think it's more important to be kind all the time, even if you can't fix a boo boo.

I miss each of you very, very much. I cannot wait to be home and give each of you a big hug!

I love you and love you and love you, no matter what.

-Dad

Talking about cancer with kids is tough 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 for the parent or guardian and a poor prognosis. These added neurological events are unique to brain cancer. Adding to the circumstances in our family’s case, the median age for a glioblastoma diagnosis is between 59 and 64 years old. My relative youth and our kids’ ages further set us apart.

For several months, Whitney 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 2018 for the best possible reason: our oldest, Isaac, then six, was accepted for a weeklong summer camp, Camp Kesem, or simply “CK” for those of us in the know. CK’s mission is 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 warrior parent “fighting” cancer, I was struck by the description of cancer as something “mean” and of treatment, a way to “wipe it out.” This narrative introduces a familiar childhood theme, good versus evil, pitting patients and doctors, the “good guys,” against cancer, the “bad guy.” This children’s version of the “cancer warrior” motif is a reigning cultural dogma. These literary devices may ease conversations with children in the short term, but I find they too often gloss over the nuances of a family’s journey with cancer. 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 necessarily winners and losers. I resist this characterization of a person facing cancer as a fighter or warrior. My surgery did not wipe out my cancer, yet our kids hopefully do not think I ceded defeat, forfeited, or surrendered. Death is not a person’s failure to fight hard. And the medical team is not to be faulted for failing to wipe out my disease. We should not empower the disease with anthropomorphic qualities. Cancer does not have an agenda to end my life.

I am living with glioblastoma. It is part of me. Cancer is aberrant biology that employs the well-honed machinery of cells to proliferate (grow) and infiltrate (spread), but the biology of glioblastoma, aberrant or not, is part of my biology. When talking to kids about disease, we should harness their own understanding of their bodies, as we remind ourselves that the image we hold of our bodies is shaped at an early age. Cancer is not a boogeyman lurking in the shadows, and kids should not fear something “mean” that could arise within them.

Developing familiarity and not fear with these images of wounds and healing served to disarm the kids and ease their discomfort. Today, they often trace the c-shaped scar on my head with their fingertips. This had become relatable with bumps, cuts, and buises because it drew from their own experience. We created an opportunity to confront the closed incision in plain view, guided by conversation, without allowing another narrative to take over.

My wife and I followed this strategy to draw from experience when we pivoted the conversation to describe cancer to our oldest. We asked him to tell us about growing up and changes in his body. We explained that our growing bodies are made up of cells, and sometimes our bodies make too many. When there are too many cells, they may form a tumor. Isaac was familiar with this term, given our active volunteer service to the National Brain Tumor Society. He has read “brain tumor” in plenty of contexts around our home, t-shirts, bracelets, and squeezy stress ball brains. With a framework in place, evolving over nearly two years, our perceptive firstborn, with a little guidance, painted the bigger picture of my surgery, the scar on my head, the “brain boo boo,” and now this new and differnt word “brain tumor.” We bravely took the next step all together and and we named that this thing is “cancer.”

With tears streaming down our faces, Whitney and I shared a glance, and I turned back to Isaac. I told him, because of this cancer, I would probably die when he and I are still young. I will not grow to be an old man. I gestured toward a wall of family photographs in our home. We talked about pictures of family members who are still living and others who are not. Whitney and I wept without hiding our tears. We empowered our oldest to continue being my helper. (We practice “seizure drills” with him to know what to do in case I lose consciousness. Similar to a fire drill, we instruct Isaac to use my phone to dial “911,” and knock on a neighbor’s door.) We gave permission to our oldest to talk with his brothers if they have questions.

Our younger children were present for the conversation, but aged four and two, they were more interested in playing. Children six and older are eligible for the weeklong camp for children of parents with cancer, and our oldest will lead them for years to come as they each come of age. One of our boys may be a camp counselor to one of your children one day. Nothing would make Whitney and me more proud.

It is tempting to dress up our language of disease with flowery metaphors and cultural tropes. But our children are better prepared to face future obstacles when we set aside euphemisms in favor of candid language. Kids are perceptive and require more sophisticated communication than we may first think. In the case of life-limiting illness, it is better to trust children to navigate nuance and uncertainty. Together, we learn.

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, even when discussing life-limiting illness. With honesty and candor, together we learn. Bravery in illness is not marching into battle. Instead, bravery is vulnerability to show emotions and role model acceptance. Discussing the same topic, oncologist Mark Lewis leaves readers with a moving conclusion to this essay that I’ll take as the conclusion for mine:

It is beyond question that there is tremendous courage to be found in every infusion suite where patients receive chemo. But there is also bravery in the decision to say no, in the person who assesses the dual threats to their body—the cancer and the oncologist—and decides not to engage.