On Awareness

Megan Stielstra

On Wednesdays the boys have karate, so Sarah and I kill time at a restaurant down the street. They have a drink there called a Campfire Old Fashioned. It tastes like smoke: burnt, but in a good way. Sarah wonders if they singe the orange peel. I don’t care how they’re made. Today I just want another. We order two, then two more, and a plate of steamed broccoli for her five-year-old daughter, Sophia, tucked between us drawing tigers. I wish you could meet this little girl. Pigtails stick out from the sides of her head like Pippi Longstocking. She sings that OMI song on repeat: Oh I think that I found myself a cheerleader. Last month I said I liked her jeggings and she fell over giggling; the word jeggings, apparently, is the funniest thing in the universe. Now when we see each other we yell, “Jeggings! Jeggings!” and laugh our faces off. It feels good to laugh.

To look at this child, you wouldn’t know she has a brain tumor. You wouldn’t know she’s spent half her life in treatment. You wouldn’t know the ferocity of her mother or the patience of her father or the adoration of her brothers or the Everest this family is climbing.

It’s Childhood Cancer Awareness Month.

What does it mean to be aware?


• • •


After my son was born, I had a hard time getting off the floor. My friend Amanda was worried and called Sarah who, she knew, had helped another friend through postpartum depression. She came over and held my baby and listened to the dark things in my head, one of a hundred ways we save each other. When I was ready to leave the apartment, she took me out fancy; high heels, mascara, the whole nine yards. “I don’t want sugar in my bourbon,” I said when she ordered us old fashioneds. The drink she handed me was draped with a feather-slice of orange peel. “I don’t want fruit in my bourbon.” She gave me a look, the one she gives her sons when they say no to whatever dazzling thing she did to the cauliflower. I took a sip. She was right, of course. It was delicious; bitter and sweet at the same time on the tongue. I loved the taste. I loved the buzz. I loved the theatre of it, like we were in a speakeasy, some other era, some other life.

We drank old fashioneds in bars around Chicago, carving precious nights out into the calendar and guarding them like the grail. We drank them at dinner parties, pretending to be grown-ups after our boys—her two, my one—passed out in sleeping bags in the next room. We drank them out of a flask to make it through the birthday parties at Chuck E. Cheese’s, which makes me sound like a lush, but I wager there are parents reading this and nodding in recognition. When she got pregnant again—a deeply wanted pregnancy, a deeply wanted child—she’d order water in wine glasses and ask to smell my drink.

“I bet you want a girl!” everyone said.

She said what we all say: Doesn’t matter, so long as they’re healthy.


• • •


When Sophia was first diagnosed at two-and-a-half—Three years ago. Jesus. It’s been that long—I took Sarah out once a month for old fashioneds. “A night off,” we called it, as if such a thing was possible. We sat in dark, quiet bars and talked about things that weren’t cancer. When we did talk about cancer, it was all hope and magical thinking: surgery and it will be fine, medication and it will be fine, snap your fingers and this will all be over, life keeps moving, on to the next.


• • •


During the first few months of chemo, I wrote an essay about how Sarah taught me to choose kindness over fear. We were in the elevator at Lurie Children’s Hospital, the end of an awful day, and a woman got on with us. She was shaking. Her eyes were red. Sarah asked if she needed a hug and the woman collapsed into her, sobbing. I held Sophia’s hand. She was two and a half years old. She had on bunny slippers. She watched her mother be kind.

Since that essay was published, I’ve received hundreds of emails. “Is Sophia okay?” they ask, and I wonder if they’re really asking is she still alive?

“Yes,” I say, “and she’s mad at me right now because I bought regular almonds when she specifically requested the spiced kind. I am the worst.”

“Yes,” I say, “and call your senators because if this Lifetime Limit bullshit passes she’ll max out her insurance before she’s ten years old.”

“Yes,” I say, “and her mother is trying to raise a gazillion dollars for pediatric cancer research so the treatments these kids receive don’t keep messing with their growing bodies and developing brains. Give her all your money.”

“Yes,” I say, “and the treatments she’s receiving are messing with her growing body and her developing brain and also they think she has PTSD and also she is five and five is hard without all this other stuff and they’re trying just to let her be five.”

“Yes,” I say, “and the world is terrifying right now. Our hearts and resources are spread so thin. Thank you for taking a moment to send love to this child and her family whom I love so very much.”


• • •


I left a part out of that essay. I was scared that writing the words would make it true and back then I didn’t want the truth. I still don’t want it but cancer could give a shit. When the woman on the elevator was done crying, when she could control her breathing and the corners of her mouth, she told us that her son just had his twenty-third surgery. He was seenteen years old. Diagnosed when he was a toddler. In and out of the hospital his entire life.

Her voice plays on a loop inside my memory: entire life entire life entire life.

I gripped Sophia’s tiny hand and looked at her mother, my beautiful warrior of a best friend. The realization played across her face like a movie.

We talk about awareness like it’s a good thing.

Sometimes it fucking sucks.


• • •


Amanda makes the best old fashioneds. Her secret: a homemade syrup of spice and boiled orange. It’s so good. Maybe this is TMI but I want to roll around in it. She makes it in bulk and leaves mason jars in my refrigerator because she knows how much I love it.

A hundred ways we save each other.

Amanda is Sophia’s godmother, and also my son’s godmother. “Therefore,” he’ll tell you, as though presenting the conclusion to a terribly complicated equation, “Sophia is technically my sister.” Her brothers, he’ll say, are “technically his.” We talk about what technically actually means. We talk about family, blood and chosen. How it doesn’t matter what we call each other. What matters is that we show up.

I chose that little girl before she was even born. That awareness lives in my bones.


• • •


Earlier this month, Sophia completed a 52-week chemo regimen. Every week for fifty-two weeks. Every Tuesday for fifty-two Tuesdays, Sarah and her husband, Scott, dropped the boys at my apartment at 7am and went downtown to Lurie, where a drug called Vinblastine was injected into their daughter’s heart.

I looked up Vinblastine online: it was isolated from a plant called the Madagascar periwinkle, tiny flowers in purple and white and red. I imagined petals in Sophia’s veins, winding like vines throughout her tiny body like in the Gabriel García Márquez story where butterflies burst from leprosy scars. The fiction is easier than the truth: Vinblastine was developed in 1958 for Adult Lymphoma. I read about the potential side effects for adults, but there’s not much about the effects on children. There hasn’t been research. Only 4%of federal government cancer research funding goes to children. I’m going to say that part again in all caps: FOUR PERCENT. Only three new drugs for kids have been approved in the past 30 years, compared to hundreds for adults with their fully-developed bodies and brains. 1 in 3 children will die because of the cancer treatment they’re currently receiving.

In a recent essay, Sarah Sentilles wrote about a friend whose son was dying: “People would say to her, ‘I can’t imagine what you’re going through.’ She would respond, ‘Yes, you can imagine it. You just don’t want to.’”


• • •


When we got to the hospital last week, Sarah asked us to go in without her. She just needed a minute.

Sophia and I walked off towards the elevator.

“My mom needs a minute,” she repeated.

We got on.

“She needs a minute to herself,” she said.

We went down.

“Sometimes she needs a lot of minutes,” she went on.

We got off.

“What does she do with her minutes?”

Maybe she cries in the car. Maybe she screams her head off. Maybe she pays bills. Maybe she calls the insurance company. Maybe she calls her therapist. Maybe she calls Sophia’s therapist. Maybe she sleeps, sitting up, eyes open. Does she meditate? Pray? Listen to “Eye of the Tiger” and psyche herself up, visualize the end goal and whatnot. Chair yoga, maybe. The news? please don’t listen to the news please don’t listen to the news please don’t listen to the news Maybe she looks over the latest MRI scans. Maybe she looks over book reports, math tests, progress reports. Maybe she charts donations to St. Baldrick’s, reads about cannabis oil, about experimental therapies, about PTSD. Maybe she drinks, our Chuck E. Cheese flask hidden in the glove compartment. Maybe she sings: Oh I think that I found myself a cheerleader. Maybe she’s writing a novel or reading a novel or watching YouTube or zoning out to Netflix on her iPhone because Jesusfuckingchrist how do you escape from cancer? Where can you put your fear? What can you do with your heart?

What can you do?


• • •


I can help with the boys. I can get her a drink, get her out of the house, hold her child and listen to the dark things in her head. I can read and donate and vote for people who support public health policies that protect our children. I can shine whatever light I’ve got on mother-writers telling their children’s stories through loss and hope and grief: Emily Rapp, Michelle Mirsky, Sheila Quirke, and so many others. I can write, which is not going to cure cancer, but god, what if? What if someone reading this just inherited a million dollars and wants to help? What if some senator on the fence about the most recent ACA repeal hears me yelling across the internet and is like, huh, maybe I shouldn’t vote to cut the insurance that funds a five-year-old child’s lifesaving chemotherapy? What if enough people read this and storm the town halls of their state representatives? What if we try? Jesus, we have to try, we have to, this is my family.

But even if it wasn’t: I want to be a person who cares not only about my family, but everyone’s family. Not just my kid, but everyone’s kids. Kids who are sick. Kids with incarcerated parents. Kids at the mercy of gun violence. Kids at the mercy of Harvey and Irma and Maria. Kids fleeing violence in Syria, in Gaza. Queer and trans kids. Kids who need our awareness. Kids who need our action. Kids who need us.


• • •


I tell Sarah I want to write about childhood cancer awareness, a story inside the statistic. “But it’s a tightrope walk,” I say.

Sophia looks up from her tigers. “Where’s the tightrope?” she says.

“Everywhere,” I say.

She laughs like I’d said jeggings. “What are you talking about, Megan?”

“Yeah, what are you talking about, Megan?” Sarah says, and I try to explain: There’s so much I see that’s not for me to say. Example: the developmental challenges Sophia is experiencing—are they from the tumor? The chemo? 95% of children who survive cancer will experience debilitating side effects by the time they are 40 from the treatments they are currently receiving. Example: the conversations I have with the boys on Tuesday mornings—the questions they ask, what scares them. Of siblings of children with cancer, 60% scored in the moderate to severe range for PTSD. Example: Scott’s late night rides on his motorcycle, driving off alone for miles at a time. An estimated 51% of mothers of children with cancer and 40% of fathers meet the criteria for acute stress disorder.

I could keep going. I could go and go until I rip down the goddamn sky.

Sarah puts down her glass. It’s almost empty anyway, a crunchy orange peel in melting ice. Sophia is singing, her voice on a loop inside my memory: Oh I think that I found myself a cheerleader. We have to leave soon to pick up the boys. Life keeps moving, on to the next. I start to stand up, but Sarah reaches over and puts a hand on mine. We’re eye-to-eye now. She’s giving me a look, the one she gave me after my son was born and I said I was too scared to be a mother. “This is your story,” she tells. Each word has purpose. She wants me to hear her. To see her. She wants me aware. “This is everybody’s story. None of us can do this alone.”

We’re talking about pediatric cancer.

We could be talking about anything.


• • •


When I make old fashioneds, I use dark purple cocktail cherries from the fancy liquor store down the street from my apartment. I’m not sure what’s in them, but oh my god they’re good. Recently, I got a panicked late night call from Scott. They were in Lake Geneva for the weekend and Sarah needed the cherries, did I know who made the cherries, those exact cherries?

I didn’t.

I checked the fridge—gone.

“She needs them,” he said again. I understood: there was a tumor in his daughter’s brain and he couldn’t save her, couldn’t deliver his family from this, couldn’t shield his wife from the awful odds but for the love of god, if she wanted cherries he’d get her the goddamn cherries, he’d go to every store in Wisconsin and if they weren’t there he’d explode the whole state with the sheer force of his brain.

“I’ll call you right back,” I said, and ran down the street to the liquor store. I sent Scott a screenshot of the label, reverse-image search, here’s the credit card, yes, next day shipping, who cares what it costs, this is a thing I can do.

There are a hundred ways to save each other.

Megan Stielstra is the author of three collections: The Wrong Way To Save Your LifeOnce I Was Cool, and Everyone Remain Calm. Her work appears in the Best American Essays, New York Times, Chicago Tribune, Poets & Writers, Guernica, Catapult, Lit Hub, Buzzfeed Reader, PANK, The Rumpus, and elsewhere. She is currently an artist in residence at Northwestern University.

To read more about Sophia, check out her Hero Fund at the St. Baldrick’s Foundation, where you can also make a donation toward research for less toxic treatments for children with cancer.