Semantics Matter: When the Doctor Says Cancer

Jax’s brain tumor is a cloud in our otherwise bright and sunny sky.

Just before the diagnosis, the fear surrounding Jax’s prematurity was starting to fade away. We we comfortable with our new normal of raising a kid with Chronic Lung Disease. The medical life of weekly appointments and therapies was slowing down. We were crossing specialists off our list like it was no big deal. Jax started daycare and I made plans to go back to work part-time.

We were so close to being able to live a life that did not include hospitals and doctors and surgeries.


We started thinking about what it would be like when Jax started preschool in the fall. I imagined him wearing his new monkey backpack, proud and happy, as he walked through the big school doors. I saw him making new friends. I imagined what he would be like as a young man. I saw him at prom and walking across the stage to receive his diploma. I imagined what it would be like to see him walk down the aisle to marry his partner; I could be a grandma some day!

I was finally at a place where I could allow myself to imagine my son’s future. After all, thinking about the future is a scary thing to do when your baby is given only a 4% chance of healthy survival at birth or when doctors tell you that your son probably won’t be able to walk or talk.

Then they found a brain tumor.

And there I was again: afraid to imagine my son’s future.

During the appointment last week, I finally got up the nerve to ask the big question. It’s a question that (obviously) has been on my mind since the diagnosis. When I heard the words “low-grade” and “most likely benign” I thought we were in the clear.

So when, I asked the doctor “Does Jax have cancer?,” I did not expect her to say yes.

She said that essentially any abnormal cells in the brain are considered cancer, especially when they are in a hard-to-reach area like Jax’s tumor. Luckily, Jax’s tumor is slow-growing and not aggressive. It is most likely a benign tumor, which means it probably won’t spread to other areas. (We don’t know that for sure, though, because we have not done a biopsy.) She said the tumor was “benign by pathology but malignant by location.”

She said my child had brain cancer.

The tumor is no different than it was before so it’s all a matter of semantics. But hearing the word “cancer” when in reference to my child’s brain? Well, that’s a bit bigger cloud in my otherwise sunny sky…