The Day I Found Out Clio had Leukemia

I will never forget the look on the doctor’s face just before she told me that my five-year-old daughter had cancer.

I had taken Clio to the emergency room that morning for a 104.5 fever — the culmination of two months of vague symptoms we hadn’t been able to pin to any diagnosis: occasional bellyaches, pain in her hips and legs, frequent fevers that would spike in the late afternoon and be gone by the next morning.

Two visits to the pediatrician over the previous month and a complete blood count had revealed nothing. In fact, I’d felt rather silly after her blood work came back normal: I had convinced myself — with help from Google, that enabler of hypochondriacs and worried mothers everywhere — that Clio had leukemia. But the only thing her lab work, done three weeks earlier, had suggested was a virus.

Now, here we were at our local ER. The doctor, a forty-something woman with a warm smile and a face that looked somehow familiar (maybe she looked a little like me?), took blood for testing and noted that Clio’s liver felt enlarged. She ordered X-rays and an ultrasound, and we ordered a grilled cheese sandwich for Clio to eat after the tests were done.

Forty-five minutes later, when we passed the doctor on our way back to the exam room after the ultrasound, her smile was gone. She sat behind the nursing station with a folder in her hands, watching us intently as we passed. Her eyes went first to me, then flicked down to Clio, who was chattering happily, clutching the tiny stuffed bunny she’d been given by the X-ray technician as a reward for being brave.

I can picture the doctor’s expression as we passed with total clarity, and yet when I try to describe it, words fail me. Anxious? Pitying? Thoughtful? Sad? None of them are quite right. But I know what I thought when I saw it: Something is wrong.

Still, when we got back to our room and there was an IV pole by the exam table my first thought wasn’t, “This must be for us.” It was: “They must have put this in the wrong room by mistake.” Followed by “What happened to Clio’s grilled cheese?”

I ducked back out and asked our nurse where Clio’s lunch was.

“We had to have them take it away,” she said softly. “We’re going to come in and talk to you.”

At that point a different nurse came over and said to Clio, “Do you want to come play with some Legos with me, sweetheart?” and led her away.

The doctor and nurse came into the room and closed the door.

An hour later, Clio and I were being transported by ambulance to an acute care hospital in downtown Boston. The bags of fluid and antibiotics from the IV pole that wasn’t supposed to have been in our exam room dangled above her gurney. And the missing grilled cheese sandwich? Taken away in case Clio needed to be put under anesthesia when we got to the hospital; she would need an empty stomach.

My hands were trembling and my mouth was dry, but I did my best to keep smiling and talking to Clio, who was shaken and anxious by this point. Getting the IV needle into the back of her hand had been miserable — I had to physically restrain her while she screamed — and I knew there would be plenty more “pokes” where we were headed.

“Isn’t this cool?” I said, with desperate enthusiasm, gesturing around the ambulance. “All these gadgets and things? And look! We can watch out the back! We’re going across the bridge into Boston! We’re going so fast, huh?”

Everything was going so fast. While we were hurtling toward Boston, my mind was still back at the local hospital, trying to remember the exact words the doctor had used, hoping to find some kind of reassurance in them.

“Her blood work is very concerning,” she’d said. “I know this is a hard word to hear, but we’re most likely looking at some sort of blood cancer.”

I seized on the “most likely,” and pressed her on what she meant.

There was a remote possibility, she said, that it was an infection of some sort. “I’ll be keeping my fingers crossed for that.”

The nurse put her arm around my shoulder, then, and asked me if I wanted to take a minute before they brought Clio back into the room and got things going for the transfer to the other hospital.

“We have to go right now? Today?”

“Her immune system is basically shut down at this point,” the doctor explained. “They’ll want to figure out what’s wrong, and start treatment right away.”

I nodded numbly, then walked down the hall to the bathroom. I cried silently for a minute, then collected myself and wiped my eyes. There would be time for this later. Right now, I had to focus on Clio.

I stepped out into the corridor, the only place I could get any decent cell phone reception, and spotty at that, and called my husband, Alastair. He was at a street carnival with Clio’s twin sister, Elsa, and could barely hear me above the noise.

“Her blood work is bad,” I told him. “Either some kind of infection, or maybe cancer.” It hurt to say the word. It hurt even more shouting it so he could hear.

The phone signal stuttering in and out, I told him we’d talk later; right now he just needed to pack a couple of bags and meet us in the city.

“OK,” he said, “I’m coming.”

The ER at the city hospital made the local hospital’s feel cozy and almost quaint by comparison. Equipment beeped, phones rang, and nurses, administrators and medical students paraded in and out of our curtained bay while we waited to be admitted to a room upstairs.

Between this and trying to distract and comfort Clio, Alastair and I barely had a chance to talk. But I do remember reiterating to him that the doctor at the previous hospital didn’t say it was cancer; she said it probablywas.

I clung desperately to the possibility that it wasn’t. Because our child couldn’t possibly have cancer — all those other leukemia-like symptoms and Google be damned. We weren’t one of those families, facing months and years of treatments and being brave and doing walkathons and all the rest. Those were other families (the poor things; how awful). Not us.

As for the head ER pediatrician who eventually came in to look at Clio, who told us that most kids who had “this disease” did very well with treatment, he must have been given the wrong information; apparently no one told him that this wasn’t a done deal. Didn’t he know that there was still a chance it was some kind of infection?

“I suppose there’s a very slight chance,” he said when I asked. “But I highly doubt it.”

The oncologist we met the next morning said the same thing: she was 99.9% certain it was leukemia. Still, I didn’t believe it. Rather, I couldn’t believe that any of this was happening. It was all a mistake.

Even when the tests for leukemia cells in Clio’s blood and bone marrow over the next two days came back positive, and we knew without a doubt that it wasn’t a mistake at all, I ran up against a wall of mental resistance each time I tried to tell myself, in my calmest, most sympathetic inner voice, that this was our reality now: We were a family with a child with cancer.

It’s been two and a half months now since Clio’s diagnosis. She’s doing beautifully, and although she has a long road ahead — two more years of chemotherapy at least, the next six or seven months of which will be intensive — all signs point to a full recovery. Her type of leukemia, ALL Pre-B, has excellent cure rates, and she has responded well to treatment so far.

Her limitations and treatment schedule have, of course, had a huge impact on our daily lives: Clio isn’t starting kindergarten this fall with her sister because her immune system is too compromised by chemo to be in a crowded space with other children. Soccer, which she was so looking forward to starting, will have to wait, too.

Meanwhile, there will be countless clinic visits and hospital stays, and managing our work schedules and childcare coverage around those, adding in the ever-present possibility of an unplanned hospital stay feels like a full time job. And then there are the medications to administer, records to keep, insurance paperwork to fill out.

But for the most part we’ve accepted and are accustomed to our new reality. We’re getting through it, one day, one treatment cycle, one challenge at a time. The shock and fear of the first days are long gone, replaced by patience and determination.

But there are times — in the middle of the night, first thing in the morning, or when I have some other brief moment to reflect — when I still can’t quite believe that my daughter has this illness.

And to this day, when I think about that first, kind ER doctor’s face as she was about to deliver the news (which on some deep, intuitive level I was already expecting) I feel a chill inside. And if I think about those first hours too hard, for too long — as I did when writing this piece — I find myself holding back tears. It’s all too real.