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

This first-person account is the experience of Chris Malinos, who lives in Ottawa and whose son, Theo, is being treated for leukemia. For more information on CBC’s first-person stories, please visit FAQ,

It was an innocent question. Parents say little things like this all the time. Sitting on a park bench on a summer afternoon while our young children played nearby, a mother from the neighborhood wanted to know if our older son, Theo, was NJ.Ooid Grade 5.

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

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

Instead of staying in class, he skipped school and spent long days and nights in a hospital bed due to chemotherapy. Instead of playing with his friends, he was losing his hair and vomiting.

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

I searched for possible answers and couldn’t bring myself to mention his diagnosis. I thought about the heavy emotional burden of casually discussing my son’s cancer in the middle of a park and decided it was easier to lie.

“Grade 5 was okay” I said, silently feeling sad for Theo.

Since Theo’s diagnosis, this kind of back-and-forth – unintentionally devastating – has made daily life so difficult.

This isn’t just talk in the park. Rushing to school to pick up my other kids after a long day of chemotherapy, only to have to wait in the parking lot for the coast to be empty so I don’t have to talk to anyone. It’s overhearing friends and coworkers discussing their weekend plans, when I learn that Theo has become so weak from treatment that he can’t safely leave the house.

My days are filled with memories of what this disease has taken from my family, and how it has taken away Theo’s childhood. I still remember how sad it was to see Theo’s friends go trick-or-treating without him because he was too tired from chemotherapy to join in.

Cancer – cruel and relentless – grips us and follows us wherever 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 the memories of what we have lost can be so painful.

On the hardest days, they make me want to completely disconnect from the world.

I began talking to others who understood grief and loss – including fellow cancer parents. He shared how uncomfortable he felt even in his daily conversations. And it hit me. As scary as going to the hospital is, at least there we don’t have to explain anything or pretend to be okay. This provides a kind of relief.

The 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 joy. And sometimes sharing Theo’s story with others feels emotional and empowering – like we’re in control of what’s happening to us.

Still, though, I find myself calculating the risk-reward. Do I have the emotional capacity today to discuss my son’s cancer and with whom?

I would never expect people around us to stop their lives or understand what the cancer journey is like if they have not gone through it. Talking about grief makes most people uncomfortable, and I understand why.

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

Family, friends, neighbors and even strangers have stopped serving home-cooked meals. They have delivered a Lego set and care package to boost Theo’s spirits. He wrote cards and letters of encouragement that still adorn us today.

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

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

When that happens, small talk at the park won’t be so painful. Risk-reward calculations will not be necessary. And the outside world will feel safe – even joyful – once again.

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