Chapter 12: loss of delineation

But then 2020 arrived. And the lesion still hadn’t budged.

The phrase “diffuse midline glioma” was still there, buried in the footnotes of Evelyn’s chart. But the doctors no longer spoke it with conviction. “Evolving post-infectious inflammatory lesion” began to appear more frequently. It was a theory that made more sense the longer Evelyn stayed herself. The scans became consistent. Her neurological exams too. No regression. No new deficits. Her shunt functioned perfectly, keeping the cerebrospinal fluid flowing. No hydrocephalus. No swelling. No pressure spikes.

In short: no catastrophe.

I kept in touch with Rachel. Together, we became CHEO moms. That’s the phrase I used—half badge of honour, half trauma bond. We checked in on each other from time to time. We texted test results. We swapped fears and held it together when our girls were going under. We prayed—if not always to something, at least for something.

And then one winter morning, something even stranger happened. A scan came back—and the lesion was harder to find. Not just stable. Not just “minimally changed.” It had actually softened. The lines blurred. “Loss of delineation of the borders,” the report read. As though Evelyn’s brain had begun to absorb it back into its quiet machinery. As though what had once defined her diagnosis no longer wanted to be seen.

In the world of pediatric brain lesions, this kind of trajectory is rare. So rare, in fact, that it doesn’t have a clear name.

Dr. McAuley offered only this: “We have to keep watching. But… it may be that she’s one of the lucky ones.” There was no dance of celebration. No cake. No declarations of miracle. Just continued surveillance. Just the quiet, practiced discipline of not declaring victory too soon.

It’s hard to live for years in survival mode and then be asked to rejoin reality. To unpack the go-bag. To believe again in school years, RSV vaccines, summer camps. But inside my body, something had already started to shift. Fear, so long the dominant note, began to give way to awe.

Meanwhile, Evelyn grew out of being a toddler and into being a child. She developed preferences. Made jokes. Learned to run, dance, sing. Her speech was incredible. Her emotional IQ was a marvel. She was, in her father’s words, “an old soul.” Otherworldly.

* * * * *

When the pandemic hit in spring 2020, everything went quiet.

The world shut down. Hospitals changed. The waiting rooms emptied. Follow-up appointments became phone calls. The long hallway where I’d first met Rachel and Rob and Tessa sat silent under motion-activated lights. And like so many things from the before-times, our connection faded under the weight of isolation and new fear.

I got pregnant again.

Claire.

It was a bright and terrifying thing to carry a new life while still trying to hold onto the one I had. Evelyn was stable. Not healed. Not discharged. But still here. Still tethered to monitoring, to maybe, to the unspoken truth that her story could turn again at any time.

I didn’t reach out to Rachel.

I couldn’t.

Not because I didn’t care. But because I was afraid of what I’d find. I was afraid she wouldn’t write back. I was afraid she would. I was afraid she would tell me what I already suspected. That Tessa hadn’t made it.

That the hallway we met in had only led one of us back out.

And so I waited. For months. Maybe years.

Until one day, almost exactly a year ago, I typed her name into Google.

Tessa Hodgson.

And there it was. The obituary. November 21, 2020.

Fifteen months old.

I stared at the screen like it had betrayed me. Like somehow, not looking for the truth had been enough to keep it from being true.

And then I cried.

Not the loud kind. Not the movie kind. But the quiet kind that settles in your throat and leaks out slowly. I cried for Tessa. For Rachel. For the joy they deserved to keep. For the girl with moon-eyes who was born on my birthday and who lit up a waiting room even while her brain was trying to unmake her.

I cried for Evelyn, too. Because she was still here.

I felt the guilt rise up like it had been waiting for its cue. Why did my child live? Why did hers die? Why did we both sit in that clinic, in that moment, looking for the same doctor—and walk away with such different endings?

I’ll never have an answer to that.

But I carry the question with me. Not every day, but often. On my birthday. On Tessa’s.

And I carry Rachel, too. Even though our stories diverged and never rejoined.

We were once just two mothers in a waiting room, holding our babies and our breath.

And I haven’t forgotten.

I never will.

Evelyn lived.

Tessa didn’t.

One left. One stayed.

I don’t know why.

And I’ll never pretend to.

But I carry it with me. The joy of Evelyn’s life is forever braided with the ache of Tessa’s loss. They exist together in the same memory. The same hallway. The same appointment. The same impossible math of parenting children in hospitals.

Tessa mattered. She mattered then. She matters now.

And I hope—if this book reaches the right hands—that Rachel knows I’m still holding her in mine.

Still remembering. Still mourning.

Still hoping that someday, this story makes space for the ones who didn’t.

Because they are part of the story, too. Always.

I saw Rachel a few months ago. I can’t even begin to describe my feelings. She is a beautiful person and a brave soul. I keep her and her family always in my heart.