My 11-year-old son has leukemia. How and when should I talk about it?

This First Person article is the experience of Chris Mallinos, who lives in Ottawa and whose son, Theo, is undergoing treatment for leukemia. For more information about CBC’s First Person stories, please see the FAQ. 

It was an innocent question. The kind of small talk parents exchange all the time. Sitting on a park bench on a warm summer afternoon as our young children played nearby, a neighbourhood mom wanted to know whether our older son Theo enjoyed Grade 5.

And yet, to me, it felt like a punch in the gut.

In February, Theo — just 11 years old — was diagnosed with leukemia.

Instead of being in class, he left school, spending long days and nights in a hospital bed pummeled by chemotherapy. Instead of playing with his friends, he was losing his hair and throwing up.

I remember thinking “Oh, she doesn’t know.”

I rifled through possible answers and couldn’t bring myself to mention his diagnosis. I contemplated the heavy emotional weight of casually discussing my son’s cancer in the middle of a park and decided it was easier to lie.

“Grade 5 was fine” I said, quietly heartbroken for Theo.

Since Theo’s diagnosis, that sort of back and forth — unintentionally devastating — has made navigating daily life so difficult. 

It’s not just conversations in the park. It’s rushing to school to pick up my other kids after a long day of chemotherapy, only to wait in the parking lot for the coast to clear so I don’t have to talk to anyone. It’s listening to friends and colleagues discuss their weekend plans when I know Theo is too immunocompromised from treatment to safely leave the house. 

My days are filled with reminders of what this disease has taken from my family, and how it has robbed Theo of so much of his childhood. I still remember how crushing it was to watch Theo’s friends go trick-or-treating without him because he was too exhausted from chemotherapy to join. 

Cancer — cruel and relentless — grips us and follows us everywhere we go, making the outside world feel unfair and unsafe. Not just because a simple fever or virus could send Theo back to the cancer ward, but because those reminders of what we’ve lost can be so painful. 

On the toughest days, they make me want to retreat from the world altogether. 

I started talking to others navigating grief and loss — including fellow cancer parents. They shared how uneasy they’ve felt in their daily interactions too. And it hit me. As terrible as going to the hospital is, at least there we don’t have to explain anything or pretend to be OK. That brings a sort of comfort.

Risk-reward of sharing Theo’s diagnosis

As Theo’s treatment progresses, we are learning to live with the reality of cancer. There are days when going out and meeting people can bring distraction, even happiness. And sometimes sharing Theo’s story with others feels cathartic and empowering — like we’re taking control of what’s happening to us. 

Though even then, I find myself doing a risk-reward calculation. Do I have the emotional capacity to discuss my son’s cancer today and with whom?

I would never expect those around us to pause their lives or to understand what the cancer journey is like if they haven’t been through it. Talking about grief makes most people uncomfortable, and I understand why.

Yet as difficult as it can be to interact with the outside world, it’s also brought us so much love and kindness.

Family, friends, neighbours and even strangers have dropped off home-cooked meals. They’ve delivered a Lego set and care packages to raise Theo’s spirits. They’ve written cards and letters of encouragement that still adorn our mantle.

These countless acts of kindness have lifted us through the darkest moments of our lives.

Theo’s treatment is scheduled to end in a year and a half. My hope is that normal life will return for our family.

When it does, small talk in the park won’t be so painful. Risk-reward calculations won’t be necessary. And the outside world will feel safe — even joyful — once again. 

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