Helicopter parenting is not the cure to my daughter’s cancer

Let kids play.
Let kids play.
Image: Reuters/Rick Wilking
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We are eating peanut butter and jelly sandwiches in the reception room of the pediatric oncology clinic. I’m sitting sideways on a couch. Zoë is straddling the back of the couch, up against the window. From here we can watch pedestrians scurrying along Fort Washington Avenue, hunched against the wind in their puffy winter coats, the plumes of their breath billowing into the cold air. It’s a nice place for a picnic.

“That’s dangerous,” says a voice behind me. “She can’t sit there.”

I turn and there’s a doctor. I don’t recognize him, though later I’ll learn he’s the head of the department. I tell him we are fine, that we’re just sitting here eating our lunch, that my daughter is safe.

“No. That’s dangerous,” the doctor repeats. “She could get hurt.”

He stands to the side, arm outstretched like a maître d’ guiding us away from our table. So I gather our sandwiches and lift Zoë off the couch and we retreat across the room. Zoë asks why we have to move and I mumble something about safety, trying to sound like it’s no big deal.

But inside I am seething. Eating a sandwich on top of a couch is dangerous? Sitting against a window is dangerous? Are you kidding me? Cancer is dangerous. Cancer kills people.

In two weeks Zoë will have her post-treatment CT scans. These are critical scans, the ones that will answer the questions: Did surgery work, did radiation work, did twenty-two weeks of chemotherapy work. Is she cancer free?

But I am not thinking about that right now. I am thinking I should have said something to that doctor. I am composing an angry little speech. I will walk up to the front desk and complain! I will tell them my philosophy of risk.

I grew up with a relaxed view of risk. Or, a rural view. When I was eight I put a saddle on my brother’s back and rode him around our kitchen. This kitchen rodeo lasted about eight seconds. Now I have a large cap on my front tooth which has yellowed with age. But I think of my busted tooth as a good reminder. Sometimes you break a tooth but sometimes you learn to ride your brother. More importantly, if you never fall you will fall off something higher later, and probably fall harder.

My brother and I lived this falling philosophy. We fell off our ponies, fell off hay-bale forts we built in the loft of the barn, and when we were older I tumbled out the open door of my brother’s jeep as he swerved around the muddy lower fields. But we bounced back. Friends from New Haven came out to our farm and really hurt themselves. They fell out of trees and broke their legs (my parents, amazingly, were never sued). I think I knew even then that familiarity made me safe. I would visit friends in New Haven and trip on the sidewalk.

Parents in my generation often look back on their “we biked everywhere” childhoods with nostalgia. Then they instill a “you can’t bike anywhere” philosophy on their own children. This is especially true of urban educated parents, who worry about all the awful possibilities—abducted kids, speeding taxis—then put their children in a bubble. Safety becomes the goal. Risk is risky. Which is why ever since coming to New York we have been climbing trees.

On the west side of Central Park, in the shadow of the Natural History Museum, is a large gnarled beech tree. In the fall we came to the park every other weekend. I’d feed Zoë and Mia into the tree’s branches, then stand underneath as they swung above me, and try to ignore various horrified old ladies and their small dogs as they barked: “What are those girls doing up there?!”

Inevitably a park ranger would roll up on his cruiser and make the girls climb down. So we’d head downtown and climb trees in the park along the river until park rangers there made us climb down, too.

“It’s not safe,” they all said.

I never said anything back. But I thought the park rangers, and New York parents in general, had it backwards. I thought it unsafe not to climb trees. Unsafe to be safe. Parents had taken common sense (seat belts in cars), and expanded it to make no sense (wearing helmets on push scooters). Parents’ anxiety actually increased children’s’ danger because children didn’t know how to fall. Children needed more risk, not less. I wanted my children to walk by themselves to school, know how to use a jack-knife, and fall out of trees (short trees), and get back up.

But what if my philosophy was wrong?

When Zoë was a toddler she was bitten by a dog. We were at a camp in Maine with old friends and their young dog. The dog bit Zoë on top of her head when she patted him. After we returned from the local clinic — a line of stitches on the part in Zoë’s hair—the man who ran the camp offered to kill the dog. He didn’t say how, though the expression on his face said he knew. He was the father of two girls and I think he understood what I felt in that moment. That I had failed to protect my child, failed as a father in some way, and was in need of some redemption.

We decided not to kill the dog, though I spent the following years swearing that next time I would be ready somehow. Next time I would protect my child. My response would be swift and murderous — though all it really left me with was a more tightly wound temper.

So I knew my philosophy had some contradiction. Wanting my daughters to take risks, but ready to attack anything that could harm them. Wanting my daughters to climb trees, but ready to fight anyone who would keep them from climbing. Wanting, paradoxically, to protect my daughters’ right to be dangerous. Most of all, I wanted to act.

One dark night before the holidays, Zoë woke with a fever. She was clammy and pale, and running a fever while undergoing chemotherapy is serious, so Elise wrapped her in a blanket as I got our car, then I sped up the West Side Highway through blinking traffic lights and parked on Broadway and carried Zoë through the doors of the NewYork-Presbyterian emergency room. Emergency rooms in the early morning hours are taut and stressful, but as Zoë was hooked to an IV and color returned to her face, I sat by her side and felt so calm. Once the fever stabilized I drove us home. It was a Sunday morning, and as I walked down our hall I could smell the scones that Elise and Mia had baked and I entered our apartment with Zoë in my arms like some returning warrior. As if I had fought something and won.

That feeling wore off.

Because, how do you fight cancer? How do you fight something you can’t see? I would like to fight it, would like to fight something, or someone, but there is no enemy here and that leaves me swinging blindly, punching at air.

A few days after our trip to the Emergency Room I brought Zoë to the playground in front of our building. The ground was hard and icy. I was pushing Zoë on the tire swing, looping her through the air in parabolas, her furry brown hat skiddering inches above the pavement, when an adorable blonde four-year-old girl from the building next door walked over and started to watch.

“Let’s give Eva a turn,” I said.

Zoë got out of the tire swing and helped the girl inside. Eva wrapped her arms around the tire, and stared up at us. Could we push her? I asked. Could both girls swing together? Eva did not budge. She just stood there as Zoë and I presented the options (not so many with a tire swing), and I looked around for her parent but saw no one. The girl held tight, a blonde barnacle.

As she stood inside the tire, glaring at us, I began to see this child not as mere annoyance but as a small outrage. She was ruining our day in the park, harming my daughter, my daughter who was kind and had cancer and just wanted to swing free. But there was nothing to do about it and we walked away.

“Eva is being an asshole,” I said. “Let’s go climb some trees.”

Back in the pediatric oncology clinic we have finished our peanut butter and jelly sandwiches. We have met Dr. Lee. On our way out of the hospital I stop at the front desk. I tell the receptionist about the doctor who made us leave the couch, then I start talking about risk, how risk is good, and how I was there to catch my child. In the receptionist’s sympathetic face I can tell she has seen behavior like mine before, and is letting me talk myself out. I know my words aren’t clear, that I am swinging back and forth between questions that confuse me, and eventually my sentences sputter to a stop and I thank the receptionist for listening and we head for the elevator.

Two weeks later we are at the third-floor radiation department at New York-Presbyterian for Zoë’s scans. The CT room is bright and white-walled. The massive CT “donut” hums in the room’s center. Zoë drinks a formula of fluid that lights her insides, then lies flat on the gurney which slides her into the donut. Elise and I wait outside. Behind closed doors we hear clicks and whirrs. Twenty minutes later the scans are done and we are allowed back in. Through a pane of glass, in the control room, we see a team of radiologists huddled around a screen. I make small talk with a technician and ask her if we can draw on the walls. She gives us Sharpies. I draw a bear, Zoë draws a castle, Elise draws two children holding hands. Then we walk back to the pediatric oncology clinic, where we wait another hour before Dr. Lee meets us and tells us the scans are clear.

We are sitting on a red couch in Dr. Lee’s office. Dr. Lee is pointing at the grainy black- and-white image on her computer monitor, at the space where Zoë’s kidney used to be, a space other organs have filled.

“She takes beautiful pictures,” Dr. Lee says.

Elise is crying silently, trying not to show too much emotion to make Zoë worry. Zoë has hopped up on the examining table and is telling Dr. Lee about The Wizard of Oz, lightly holding the hem of Dr. Lee’s pink sweater. Dr. Lee looks into Zoë’s ears with her otoscope and asks her what she will find in there (Dorothy in one ear, the Wicked Witch of the West in the other). Dr. Lee beams at Zoë as they talk, but she is beaming at us, too. There are two storylines in the room; the news today is very good. Here in this small room in this large hospital, the adults are on air. Elise and I walk out the door swinging Zoë between us.

We call our parents, we call our friends. We feel overwhelming relief. But in the next days this feeling starts to fade, in drips and drops and sliding increments, seeping away, and what fills the space is the knowledge that in three months we will be back at the hospital.

And three months after that, and after that. X-rays, ultrasounds, CT scans. These first scans were critical. Others will be critical, too. The two-year scans are the really important ones, the ones where the research on Wilms’ tumor point to a child’s survival. Or is it three years? I’m not exactly sure which year’s scans are the most important.

And that might be the problem. Uncertainty stretches in front of us. The threat is gone. The threat is not gone. Now we face years where we hope the cancer does not return. Now we wait. So within days of feeling such boundless relief, I just feel angry.

It’s like we have been climbing a mountain and reached the summit only to realize that, no, it’s a false summit, one of those deceptions of height where hidden trees and the tricks of topography mean there’s another summit above us, and maybe another after that. So where is the real mountain top, and where are we? We are standing on a trail, looking up and thinking we were done, but see that what should be ending is just beginning. Okay, that’s over. Now what?

A late winter storm hits the city. Squalls of snow rattle our windows and I head with Zoë and Mia down to the basement to do laundry. The girls have brought a jump rope, and as I separate our clothes into the washers, Mia climbs into a wheeled metal laundry basket and holds one end of the rope as Zoë starts swinging her around the room. It’s laundry room rodeo.

“That’s dangerous,” says a voice behind me. “They could get hurt.” I turn and see a woman with long gray hair.

“Oh, they’re fine,” I say as Zoë releases the rope and Mia in the laundry basket goes careening into a washer with a squeal of delight.

“Your daughters could get hurt!” the woman repeats. She’s drawn herself up in front of me, she wants me to make this stop. “They could end up in the hospital. Really.”

At this I rise up. I stick out my chin, trying the words on for size.

“Hey. My daughter has cancer.”

I start talking, the volume of my voice rising, cancer this, cancer that, how cancer is dangerous, how this woman doesn’t know us, how she better leave us alone, and even as I say the words they feel ugly coming out of my mouth and I resolve never to use them again.

But as I am telling off this woman I see in her eyes that she—much like the receptionist at the hospital—is looking at a man who is a little unhinged. The protective parent, amplified. If this woman were particularly perceptive she might also see how scared the man in front of her is, but to recognize that would require an abundance of empathy, and as my words fall away from me all I know for certain is that I am alarming this woman. She gathers her laundry and walks away.

Zoë and Mia are now both inside the laundry basket, lying upside down and kicking their feet against the washers to propel themselves around the room, which, actually, does look a little dangerous.

I stand and watch. On my face is a smile, but inside I am on fire. I think I will remain here awhile, crashing around in the basement.