One of my favorite things to do is answer my children’s (many, many) questions. With each day, month and year the questions change, so the four conversations I’m immersed in are endless ones. (What is love if not an endless conversation?) I can’t claim to always have the right answers, but I try, and when it doubt, I fake it. We parents get pretty good at that, don’t we?
Everything changed about three months ago. My four endless conversations now have an endpoint, and it’s much sooner than I expected.
See, shortly after the new year I was diagnosed with brain cancer. My specific diagnosis is grade IV glioblastoma multi-forme (GBM). You’ve heard of it, even if it sounds unfamiliar. It took John McCain’s life in the summer of 2018 and Ted Kennedy’s life nine years before that. Kennedy died 15 months after diagnosis. McCain passed away 13 months after his diagnosis. GBM is a tricky disease. It spreads throughout the white matter of the brain very quickly and very aggressively. It often doesn’t play nice with radiation or chemotherapy and has evaded all of the most “promising” experimental therapies developed over the last 10 years.
Early symptoms of GBM vary as a function of where the tumors are located and on which parts of the brain they push. For me, it was the right motor cortex, the part of the brain that controls the left sides of our bodies. One day I noticed I was walking to the left, bumping into the left side of door frames, and feeling heavy on the left side of my body.
“An inner ear infection,” so said my primary care doctor. A very reasonable conclusion. The average age for a GBM diagnosis is mid-60s. Thirty-seven and healthy. No chance it’s a brain tumor. The next day I noticed I was dragging my left foot. Six hours later, I was in an operating room with a pea-sized hole in my skull for a biopsy. Unfortunately given the location of the primary tumor and the fact that my GBM had already spread to multiple areas of the brain, resection (surgical removal) was off the table. Three weeks and several rounds of molecular testing later, I had my final diagnosis.
At this point we will try to preserve my quality of life for as long as possible through a combination of chemotherapy, radiation and various adjunct therapies. The hope is to slow the tumors’ growth. The stretch hope is to get them to shrink. Neither outcome is a cure. Being young and (otherwise) healthy, we hope to get at least as many months as McCain and Kennedy, if not more. Our prayer is that a longer term cure may emerge while I still have time to benefit from it.
At this point, each day is better than the last. My energy is increasing after my first six-week round of radiation and chemotherapy, and I’m feeling more and more like myself, just a bald version. I know that pattern will reverse at some point. But I’ll take it for now and enjoy every moment.
But I’m also a pragmatist. These moments of strength, of feeling normal have an endpoint. And though that’s true for any one of us—tragically, 1,500 Americans between the ages of 15 and 44 will die today from automobile accidents—for me, the abstraction of death is no longer abstract. And I’ve accepted it.
What’s harder to accept is that I know death is coming long before I will have a chance to answer all of my children’s questions: How do I know if a girl/boy likes me? How should I study for this test? What acne medication is the best for skin like ours? Does God exist? How do I fix a leaky faucet? What meal should I make for a second date? What does it feel like to fall in love? I’m imagining myself answering these questions to older versions of my children, and I’m smiling from ear to ear.
So why am I writing this? I’ve recently started videoing myself answering questions that my children have not yet asked, but surely will. Those of you reading this who have lost a parent have undoubtedly felt, “if only I’d had the time to ask him/her _____”. Fill in the blank. What do you find yourself wanting to know? And at what age and stage of your life did you want to know it?
I plan to make a number of videos. How many depends on what we (and I do mean we, collectively) can come up with in terms of questions. As my four children grow, they will see me again on video as often as they’d like, and I’ll do my best to answer the questions that are most likely on their minds. I’ll organize the questions by approximate age they would likely ask them, and hope to gather and answer questions that will last them through the age of 40. After all, it’s unlikely that I will know what it’s like to be any older than that. I have to trust they’ll figure it out for themselves at that point. Luckily, they have each other, along with a loving, brilliant mother, four wonderful grandparents, and a team of aunts, uncles, cousins, and friends who will be there every step of the way. I know they’ll be in good hands.
If the mood strikes you, send me an email with the questions you think they will have at questionsiwouldhaveasked@gmail.com. I can’t promise I’ll respond to every one, but I’ll do my best. What I’d love to know is this:
- What are the most important questions you asked your parents
- What age (approximately) did you ask those questions?
- If you’ve lost a parent, what are the questions you wish you would have asked, and, again, at what age?
The kindness of strangers is a wonderful thing. If you have a few minutes to spare, then from me, my wife, Erin, and our children, thank you.
Now get back to living, loving, and seeing what is beautiful in this unpredictable, wonderful, tragic, forgiving thing we call life.
Edward “Ned” Smith, is a professor at the Kellogg School of Management at Northwestern University. He and his wife, Erin, have four children: Finnegan is 11, fiercely loyal to his family and friends, and precocious. Beckett is 9 and the classic middle child, the sensitive, selfless peacemaker. Eliza is 6 and strong in all the right ways; in her zest for life (and song), love for others, and sense of right and wrong. Cecily, the curly-haired 3-year-old, is the consummate strategist. Hell or high water, puppy dog eyes or biting, she gets her way.
