Medical Examiner

Coronavirus Diaries: What My Daughter’s Chemotherapy Is Like Now

We have to keep our distance from the people who used to make these cancer center visits tolerable.

A baldheaded child wearing a mask
Photo illustration by Slate. Photo by Getty Images Plus.

Coronavirus Diaries is a series of dispatches exploring how the coronavirus is affecting people’s lives. For the latest public health information, please refer to the Centers for Disease Control and Prevention’s website. For Slate’s coronavirus coverage, click here. If you have a story we should tell, please email coronavirusdiaries@slate.com.

The door to the cancer center slides open without touch. Just inside sit two people wearing scrubs and masks. They stop us with questions. “Any fever? Any cough? Have you traveled outside of the area in the last two weeks? Have you come into contact with anyone that has been diagnosed?”

I shake my head no at every question. They offer us hand sanitizer, a small squirt into our palms, and we head to the elevator.

“Don’t touch the button,” I warn her. “I’ll do it.”

She likes to push the buttons herself, and even with the mask, I can tell she’s pouting. It is blue with a paisley design, hooked over her tiny ears. Above it, her hazel eyes gleam. She is so pale and slight that it makes my heart ache sometimes just looking at her.

We step into the elevator, and I use my elbow to push the “2.”

“Going up,” the elevator intones.

As the car rises, I stare at my daughter’s back. She is quiet today. From this vantage, I can see the huge bald spot on the right side of her scalp. The rest of her hair has become frizzy, broken, and stands out in a golden halo from her head. I cannot resist the urge, so I reach out and cup the back of her skull in my palm. Warmth seeps into my hand.

“Mooooommmmmy,” she laments.

The elevator doors part, and we disembark. The waiting room is empty. Not just of people, other families waiting for appointments—but of everything. The art tables are bare. There’s no plastic container of free hats, scarves, and little port pillows, which patients use to protect themselves from the irritation of a seatbelt on their chest. There is no longer a Keurig, no coffee pods or cups. Kara, the Arts for Life volunteer, isn’t here doing her usual craft projects to entertain and distract the kids from the tedium and pain of a chemotherapy appointment. Instead, there are prepackaged crafts behind the front desk, where the receptionist now sits behind protective glass.

I direct Hazel to sit down. The receptionist offers me the box of crafts and allows me to choose one. Behind her mask, I can see that her face is pinched with worry. I select a craft, careful only to touch one: paper cutouts of acrobats, a straw to make a trapeze swing, and colored pencils to decorate them. We start coloring. The receptionist types away at the computer and avoids eye contact.

After a few minutes, the inner door swings open, and a nurse we haven’t seen before calls, “Hazel?”

We put the trapeze artists back in their plastic bag and follow her to the triage room. We begin a routine my daughter knows well. She removes her shoes and stands on the scale, then moves to the wall to have her height measured. The blood pressure cuff next, then the pulse oximeter, and the thermometer. The nurse places each piece of equipment aside to be thoroughly cleaned before the next patient arrives.

“Any cough? Fever? How is she doing?” the nurse asks.

I explain that she has been doing well, other than a possible sprained ankle from going down the slide wrong. The nurse nods, makes some notes, and then leads us to the access room down the hall. Again, the halls are quiet. No laughing or crying voices echoing, no nurses moving to-and-fro.

“We’re keeping staff to a minimum,” the nurse explains. Across the country, many offices are canceling all but the most critical in-person appointments and doing appointments over video when possible.

We see the child life specialist, Cole, sitting at her desk as we walk past, and wave. She has been with us since Hazel’s diagnosis and is one of Hazel’s favorite people. When Cole stands to come toward us, I shake my head vigorously.

“We’re trying to minimize interactions with anyone that aren’t absolutely necessary,” I tell her.

She gives me a sympathetic smile and sits back down.

“I understand completely,” she says.

Hazel wants to know why Cole can’t come with us while she gets her port accessed. I explain about the virus and maintaining distance from people when possible.

Port access is probably the scariest part of chemotherapy for most kids. Hazel has a nickel-size lump on her upper left chest. That bump is a port, just under the skin. The port tunnels subcutaneously, then dives down under her collarbone, allowing access to a deep vein. Any time she needs a blood sample taken or chemo administered, a needle can be introduced into it and left in place until no longer needed. It’s not a comfortable process.

She sits in my lap and leans back against me, her fuzzy hair dusting my face. I put on a story from the Calm meditation app. The nurse carefully scrubs the area to remove dirt and bacteria. We use “freezy” spray to numb it. Hazel requests her “scents,” so I open her special felt bag we bring with us to every chemotherapy appointment and choose a small tub of lavender essential oil to uncap. She inhales deeply. The nurse counts “1, 2, 3,” and sticks the needle through the skin. We haven’t had this nurse before, and her technique is a bit slow and awkward. Hazel squeals in discomfort.

Hazel then requests a stick of gum, which I obligingly produce from her bag. Oddly, of all things, she hates the next step in the prep for chemotherapy, an infusion of saline into her port, the most. As the saline enters her bloodstream and spreads throughout her blood vessels, she can taste it in the capillaries of her taste buds. It isn’t something that happens to everyone, but it definitely happens to her. A friend, suffering from stage 4 breast cancer, told me that it is a horrible taste that stays with her for hours after treatment. Chewing gum can mitigate the flavor.

The nurse then collects blood samples via the port as I watch obsessively, wondering, Is she being as clean as possible? Did I hear her cough? She cleans it one more time and places a sterile cap over the end.

We are moved to the last room, again through empty hallways, to await chemotherapy.

The chemotherapy room is a private place. It has a couch, a heated recliner, and a bedside table. There’s a TV with a DVD player that we never use. Out the window, we have a view of the blue mountains that rise up past the parking deck. We might almost be in a rec room in a comfortable ranch house in the suburbs, except for a blood pressure machine and an infusion pump.

Normally we are active while we wait for chemotherapy. Cole entertains Hazel with science projects. Last time, it was a vinegar and baking soda volcano that Hazel packed with purple and red glitter. We often walk the halls, peeking in and saying hi to other families, or we raid the snacks on the hallway counter. Sometimes we return to the waiting room to finish an art project. Today, we simply wait in our room. No one enters. When Hazel requests water and a snack, I duck out by myself using my elbow to pry open the door, grab crackers and water, and hand-sanitize again before I bring them back to her. Cole passes by and waves at Hazel through the frosted glass.

Our oncologist comes into the room. She sits back from me.

“Her counts look good,” she tells me. “Any complaints?”

As we talk, she reaches for gloves.

“Any shortages yet?” I ask, eyeing the bright purple latex.

The oncologist shakes her head. “Not yet.”

It’s a fear that I can’t shake. As worldwide cases of COVID-19 reach 1.5 million, and the coronavirus pushes hospitals to capacity as it grinds the economy to a halt, will the critical protective equipment used for chemotherapy be available? Will my daughter be able to keep receiving the chemotherapy that will save her life? And what about the drugs? Chemotherapy drugs become difficult to obtain all the time. Several months before the virus, a staple of her regimen, vincristine, became scarce. Decisions had to be made. The oncologists who work with adults shunted their supply to the pediatric side. This was before the pandemic.

The oncologist examines Hazel, touching here and there gently, looking in her mouth and her ears. As she does so, she talks to me.

“I’m in a giant group of oncologists online. We’re all over the world. We’ve had some children suffering from leukemia test positive for coronavirus,” she says, “but all of the kids have done fine with it.”

I feel a twinge of relief. She finishes her exam.

“You look great!” she pronounces. Hazel’s eyes tilt upward at the corners, and I know she is smiling.

After she leaves, our nurse from the access room returns with a bag of yellow liquid, methotrexate, and a clear injection, vincristine. She sets up the infusion pump, and whirring fills the room. Hazel watches Toy Story on her iPad.

A week ago, I asked my friend with breast cancer what having chemotherapy is like. I haven’t experienced it myself, and so I have no idea what my child suffers. My friend seemed to think about it before telling me: “It feels like your body is burning from the inside out. After a while, it gets very hard to deal with. … There is pain that is hard to describe.” I cannot stand to think of my daughter in pain that I cannot alleviate.

In 30 minutes, we are finished. The nurse comes to de-access the port. This means she must peel the bulky dressing from Hazel’s sensitive skin, then pull the needle out quickly. Hazel hates having the dressing removed, so I douse it liberally with an adhesive remover and gingerly peel it from her skin. She yelps when I pull the skin on her neck.

“Mommy, I’m scared,” she looks at me with huge, damp eyes.

The nurse reaches over my shoulder and gently pries the needle out of her skin. Another yelp. The Band-Aid today is Minions.

We gather our things and walk down the silent hallway, waving at the oncologist as we pass.

In total, we have interacted with only two people during our visit. Hazel’s white blood cell count is strong. Still, my skin feels prickly for the rest of the day, as if I can feel virus particles replicating, and I wonder, Were we infected?

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