Elizabeth BeckerEssays / Number 94
We begin and end our days with a story.
At the pediatric unit where I have worked the last four years, we report in the morning, as the orange sun creeps into the corners of fluorescent lit hallways, and at night, as helicopters take off from the roof into city skies streaked with magenta and gold. We report, and it is our common narrative.
We tell facts; objective, neat, spelled out clearly and divided by body system. There is order, a lack of opinion or feeling, cold data divorced from the warm, breathing child it describes. And yet even here, the story finds its way in, amongst the numbers and percentages and lab values. Like a wild and persistent weed, it grows stubbornly through the cracks.
Eight-year-old sickle cell patient. Two liters oxygen via nasal cannula. Heart rate tachycardic to the 120s. Hemoglobin of 8. Will not eat the hospital food but will eat chips as long as they are cool ranch.
Four-year-old with AML. Neutrophil count of 0. Fever of 103. Port accessed with a ¾ inch needle. Hates lab draws but will cooperate as long as she can get a princess sticker at the end.
Sometimes the reports are easy and quick, slim novellas or short stories. These are the kids in for routine surgeries or asthma exacerbations, the ones with pleasant and cooperative families, the ones we mark with a big “E” on a tool used to measure patient acuity.
There are also the well-worn novels with dog eared pages, chronic kids in for routine stays, cystic fibrosis patients admitted for tune-ups or sickle cell kids in for a pain crisis. We know these stories, and these children, by heart. We know their medical histories, the bold chapter titles and important passages. But we also know their quirks and idiosyncrasies, the memorable sentences and deft turns of phrase, the way she will only take her stool softener with apple juice, the way he likes to eat his biggest meal of the day at 10 p.m. when his family comes to visit.
And there are the stories that we struggle through. The dense Russian novels. The cerebral Kafkas and Prousts. These are the reports we know will be hard the moment we look in the eyes of the nurse going off shift. We see the sag of her shoulders before she even starts to speak, the way exhaustion clings to her like dust.
For other reports we might stand, joke our way through as we lean against the desk at the nurse’s station, sip our coffee and eat a quick snack as we scribble between bites.
But for these stories, we sit. We find a quiet space. We pause and take a breath.
These are the new diagnosis cancer patients, the ones whose wide-eyed parents write down everything any healthcare worker tells them, trying to gain some control over the unruly abyss that has cracked opened beneath them.
These are the children with Child Protective Services involved, the children with security bands on their tiny ankles and restrictions on visitors, the babies who are kept up at the nurse’s station because they would otherwise be alone.
And of course, these are the broken ones we can’t fix, the children at the end of life with the letters “DNR” in bold on their chart, the ones who get the large room at the end of the hall, with its own small couch and a mural on the wall of a green forest scene filled with gentle -eyed deer.
These are the stories we tell each other, the burdens we hand off piece by piece to the oncoming nurse, like a soldier removing armor after a battle, until there is nothing left but the memory of the weight.
On good days, the memory lingers only until the elevators close shut with a metallic thud, or until we step outside into the cool air. These are the days we leave the stories behind, trapped inside the thick walls of the seventh floor.
Other times their stories follow us home, cling to our scrubs along with the stale, antiseptic hospital smells, linger for hours or days, a dull buzz in our ears that eventually fades.
And then there are the ones that stay with us, the weights we can’t remove. Anyone who does this job carries a list of names. And the longer we stay, the more it grows, name by name, story by story, each one a little heavier than the last.
Every nurse who does this job has a limit, a number of names she can carry, a point where the weight is too much, when scar tissue turns brittle and to continue would be to change into someone unrecognizable. For some it only takes one, one story that breaks something that can’t be repaired. Others can go for years. A few can do it for decades, for an entire career. But everyone has one name that will be their last, the one that simply hurts too much, the one that makes us walk away.
But even then, the list remains. Even then, we carry it with us, words and sentences, images and sounds, an entire inner universe of stories begging to be told.
The problem is that nurses, outside of report, don’t tell stories. From the first day of nursing school, that’s what we’re told, a directive drilled into our brains with as much frequency as lessons about basic human anatomy or pharmacology. Silence is not simply taught as a virtue, but as one of the most fundamental aspects of the profession. Any attempt to break that silence, to share with the outside world all that happens within the walls of a hospital, is considered a violation of ethics, professionalism, and even the law.
Our patients, their stories, the way they live and the way some die. They cling to us, but they do not belong to us.
• • •
I left my job this winter, to stay home with my two young children. I’m still a nurse in title and by law, but without my patients, without those kids, I know that I’m no longer a nurse in any way that really matters.
There were so many times I felt ready to leave it all behind. All of the days without lunch breaks, or restroom breaks, or even a moment to fully exhale, the days we were slammed with admissions or when the kids were too sick, or too busy, or too sad. All of the nights that stretched endlessly, when the only doctors to help us were residents in training, when we felt mostly alone to deal with the fevers and wheezing and pain in the long, dark hours of the night.
So often I wanted it to be over, the incessant beeps, the sight of stale, gray hospital food, the diaper changes and baths, the every two hours turns, the urinals and bedpans and wound care and blood draws, the tubing that wound like spider webs around tiny limbs, the bright yellow bags of chemotherapy.
I thought I would feel a release when I said goodbye, that the weight of their stories would lighten. If it was all in the past, I could compartmentalize the sounds and images and smells, shut some kind of door or lever, wall the bad away, brick by brick.
But my wall has failed. My lever is broken.
I can still feel the weight of it all, only now it presses harder, because there is no one beside me who remembers their names, their beautiful, round steroid faces, the way they rolled down the halls on IV poles, the hospital beds full of stuffed animals, their enormous eyes in the middle of the night, deep pools reflecting the cool blue light of monitors.
I no longer start and end my days trading stories. I can’t sit at the nurses’ station or break room and say their names out loud, the kids we loved, the ones we lost, the ones embedded in our memories like shrapnel.
Nurses make sense in a hospital. Our scars fit there.
But outside, away from the floor, removed from the war, we lose our footing. The old wounds reopen. And we can’t close them, because they must stay covered. They fester, in the dark, without oxygen or sunlight.
But what if we could rip the bandages off, let our wounds breathe in the open? What if we took our lists and read them out loud, name by name, story by story, until our voices were hoarse and our throats were dry?
I need my voice. I don’t think my shift can end without it. Like all nurses, without giving report, I just can’t let them go. Even after all this time.
I’m ready to speak now.
• • •
Caroline, four years old and dying, not from the leukemia, not yet, but from the aggressive drugs used to treat it, drugs that have left her heart and lungs scarred and failing.
She is half bald, with only thin, patchy wisps left of what was once her shoulder length blonde hair. She hates nurses and doctors, with an intensity that is not surprising for a toddler who doesn’t understand why we must continuously poke and prod her. She has been with us for weeks, but still bursts into tears every time we walk in the room, even just to check in and say hello.
I take care of her night after night. She sleeps wrapped up in a tiny ball that makes the hospital bed look enormous, under a mountain of fuzzy pink blankets.
I walk in her room in the early hours of morning and peel the blankets back, one by one, layer after layer, until all that’s left is a thin sheet. I can feel the heat radiate off her body before I even touch her skin. She’s had a fever for days, from an infection deep in her left lung.
Her mother stirs beside me in the recliner. She has four children but is still so young, in her mid twenties, younger than me. She smiles as she rubs her eyes and sits up. She always smiles, even though she’s exhausted, and we continuously interrupt her fragmented stretches of sleep, even though I’m about to wake her daughter up and make her cry once again.
I move the sheet off Caroline and her pale eyelids flicker open. She sees me and begins to moan and whine. Her mother reaches out a hand, and Caroline takes it immediately, a reflex.
“I’m just giving your leg a hug,” I say as I wrap the green blood pressure cuff around her tiny ankle. She stares at me. Her blue eyes are enormous and full of mistrust. No matter how much we sell it, she knows we sometimes have to hurt her. There have been too many needles, too many foul-tasting medicines, too much pain. She’s old enough to remember it all.
As we wait for the cuff to inflate I take the thermometer probe out and hand it to her.
There is an agreement, between Caroline and the nurses, a script that we must follow for her cooperation. She gets to hold the thermometer probe.
She places it in her mouth and within a few seconds the number reads back at me, 103.8.
Her mom lets out a small exhale, soft and barely audible against the hum of the IV pump as it pushes antibiotics and fluids into her daughter’s veins.
We all know what a temperature means, blood cultures and labs, Tylenol mixed with chocolate milk. It happens so regularly now that it feels routine.
I unwrap the cuff from Caroline’s arms.
“Okay, sweetie, I’m going to need to get to your button.”
She turns her head away and lets out another moan. Her button is the name we use for the port in her chest. Everything has a non-medical name, to soften the edges. We call the clear IV tubing her straw. Saline flushes are water. X-rays and CT scans and MRIs are pictures.
She won’t look at me as I raise her bed up by several feet, or as I set up my sterile field and put on my mask and gloves. Her mother, who has now climbed into the other side of bed with her daughter, puts her own mask on and places one over Caroline’s face. Only then does she turn her head to look at me. She knows she has lost the fight. Every day her fight ebbs away, little by little, like air from a balloon.
I crouch down in the dark and take the cap off the end of her port tubing. I can feel my own hot breath coming up from the top of my mask.
The room is quiet. The entire unit is quiet save for the occasional noises of telephones or monitors. It’s just past three in the morning, and the city sky outside the window is navy blue.
For a few minutes I work in silence as Caroline watches me. I fill up syringes with her dark red blood. I flush saline back into her port.
“I want Chip at my party,” Caroline says abruptly, her voice thin and muffled by the mask. I look up and see her glassy, feverish eyes focused on my face with an intensity and focus that is beyond her years.
“That’s an excellent idea,” I reply. Chip is one of the therapy dogs, a tiny Jack Russel Terrier that plays a toy piano as a trick. I glance at her white board and see his card tacked near the bottom. All of the dogs leave the kids their photo cards, and the kids who stay the longest end up with dozens tacked to their walls.
I clamp her line near her chest. She is breathing rapidly and shallowly, from the fever and infection, at a rate that would make an adult pass out. But it barely seems to affect her. Kids compensate. They all do.
“And remind me what kind of cake?” I ask. I glance at her mom and can tell she is smiling beneath her mask. This has become part of our routine too. Caroline typically refuses to speak to me, or any of the nurses. She veers from tantrums to cold indifference when we are in her room. But a few nights prior, in the early, dark hours, as I crouched in the dark beside her, she looked at me with solemn eyes, and began to tell me about a party she was planning on the hospital play deck.
Each night I worked since then, the party has grown. Every night some new detail is added, a bouncy house, princess costumes, pizza and cupcakes. Her parents have no idea where it came from. But she speaks with total conviction. For her, in the middle of the night, there is nothing more certain or serious in the world than the existence of this party.
She can’t go outside her room right now, not with the fever and infection risk, for her sake and the sake of the other children. But she can see the play deck outside her window, the blue slide and wooden swings, the soft, artificial ground. She must have every inch of it memorized.
“Pink cupcakes,” she says at once. Her eyes widen even further. I put a small blue cap on the end of her port.
“And who will be invited?”
“Mommy and Daddy,” she says at once. She recites more names, both sets of her grandparents, her brothers, more family and friends. “And Buttercup,” she adds.
“Who is Buttercup?” I ask as I fill small tubes of varying colors with her blood.
“My dog,” she replies simply. I glance at her mom.
“We don’t have a dog,” she says with a shake of her head. “Yet.”
“That sounds like so much fun. Can I come to your party, Caroline?” I ask as I pull my mask down. She quickly removes her own mask and considers me for a long moment. And then she blinks, like coming out of a dream. She remembers who I am, why I am there. She turns back to her mother and buries her face in her chest.
“I’ll take that as maybe,” I say, and Caroline makes no sign that she hears me.
A few weeks later Caroline leaves us to go to St. Jude’s. There is nothing more our doctors can do for her. She has failed two rounds of induction chemotherapy, and she is far too sick for a third.
I follow her progress on social media through posts by
her parents. They spend months there in a kind of holding pattern. No doctor will attempt treatment for her leukemia until they can fix her heart and lungs, or at least make them strong enough to withstand more chemo.
I see pictures of her at the Memphis Zoo, in the fancy hospital play areas. She looks stronger. The frail little creature who couldn’t even walk when she left us turns back into a child, still thin and pale, but smiling, able to run and play with her brothers.
I’ve been a nurse for almost two years at this point, far too long to believe in the fairy tale of medical miracles, but I let myself believe that she might be okay. I am foolish and willfully naïve, because it’s such a lovely idea, that this little girl will survive, that St. Jude’s will save her when we couldn’t.
I believe right up until the moment her mother posts a long Facebook message telling everyone that Caroline is not eligible for further treatment for her leukemia. The medical team at St. Jude’s decides that any attempt would likely kill her. There is nothing left to do but come home.
I continue to follow the posts and videos. I see Caroline at Disney World, her Make-A-Wish trip. I see her as she comes home to a house that has been renovated by kind and generous friends and family and strangers. I watch her dance and twirl in the dark of her front yard, under a shower of fake snow in November. They can’t guarantee one last snowfall, so her parents have decided to engineer one.
I see her squeal with delight as her parents surprise her with a fluffy puppy. Its name is Buttercup.
She grows thinner as Christmas approaches. And then only a few days after Christmas, another post. She dies at home, in her own bed, in her mother’s arms.
I go to her funeral in a pink coat and sit in a pew at the back of the church. All around me is a sea of pink, row after row of broken adults at the funeral of a child wearing her favorite color because it feels like a small act of rebellion against the brutal world that took her.
• • •
I need to know that you can see her now, repeat her name, her story, back to me. It brings her back, this remembering. For a moment she is there beside us. I can see her enormous eyes, the way she clutches her favorite stuffed toys, the white, swirling snow landing on her head under the porch light.
There are more, too many more.
Matt, eighteen years old. A tall, strong athlete when I meet him, brimming with confidence the way that only a popular high school baseball player can. He sleeps upright in the recliner at the time of his diagnosis, because a large tumor presses on his spine, and any other position causes unbearable muscle spasms.
He does so well at first, for months, despite the prognosis. He’s a flirt, confident and funny. All of the nurses fall in love with him as he leans on the desks at the nurses’ station, his IV pole beside him. We watch him go to the oncology prom with his girlfriend, watch them hold hands down the hall. If he weren’t bald it could be a real prom, one without sickness and nausea medicines and central line dressings.
We make a banner when he finishes his last chemo. We watch him leave.
And then we watch him come back through those same doors. The cancer spreads everywhere.
Sometimes kids go quickly. Sometimes it takes months. Matt dies slowly. He is in so much pain and so afraid, despite the medicines we pump through him in higher and higher dosages, along with anti-anxiety drugs. But no amount of medicine makes him any less scared. There is no acceptance of death, no peace to be made, not for a high school senior who was a healthy, young baseball star less than a year ago. He starts to sleep with a giant stuffed dog in his bed. I have to move it to the side to reach him at night.
Near the end, he stops sleeping entirely. He wants to be up, in the hallway, in the light, around people, all the time. He yells at his mother when she drifts off sitting upright in a chair, even though she’s been awake for days. All the lights in his room must be on, along with music and television. There is so much noise. It vibrates down the hall in the quiet of night shifts, a cacophony of voices and music and sound. It does nothing to distract him from the deterioration of his body.
We increase his medicines. We try white noise, classical music, a lavender scented device from the palliative team. He gets visits from the chaplain, from the therapy dogs. We give him nebulized opioids around the clock in an attempt to stem the anxiety.
Nothing works. Nothing helps. He can’t breathe. Tumors press on his heart and lungs to the point where he is literally drowning in his cancer. He is eighteen years old and terrified until the very end, and we, his care providers, the ones who are supposed to help, can only watch and hold his hand and check our watches to see if it’s time for yet another bolus of Ativan or morphine. We can’t save his life, and we can’t make his death bearable. It is a failure that echoes.
• • •
There are so many more. So many more kids. So many more stories. For every one I share, more pile up behind it, waiting for their turn in the light.
Sixteen-year-old Skylar with short, bright blue hair, a perfect teenage act of mutiny against the ravages of chemo and radiation. She dies of lymphoma, in the pediatric ICU. Her parents are unfailingly kind until the end. Their kindness is shattering.
Four-year-old Justin, whose mother is never there, who cries into the phone night after night, asking her to come back. She visits and is agitated, on edge. She never stays long.
Justin is on a continuous pain pump, because the chemo for his neuroblastoma has riddled his mouth and GI tract with sores that leave him unable to eat or drink. He throws furious, red-faced tantrums, where he kicks and screams and rages at any human within reach. He is unapologetic, angry at everyone, and everything we have to do with him is a fight. One night, during one of the bad spells, after he’s screamed his voice raw, I climb into his bed beside him. He won’t look at me or let go of the phone, but I read out loud from a book of fairy tales. I read story after story, and as I read I watch the tension slowly leave his tiny shoulders, his fists unclench. He drifts off, and I have so many things to do, other patients to see. But I sit there, for what feels like hours. I just can’t bring myself to leave him.
Seventeen-year-old Ben, the first child I care for who dies. He is a sweet theater nerd, with posters for local productions up in his room. He has Ewing’s sarcoma, and he can no longer move his arms or legs. His parents have fought with half of the nursing staff, fired many of them. Everything bothers them, the way a nurse flushes the toilet in the middle of the night, or the squeak of someone’s shoes. They want to pick fights. They are watching their teenage son die, and the only way they can survive is to be angry. I see his mother’s eyes follow me as I turn her son in bed every two hours, change his diaper, put thick white cream on his skin.
Sixteen-year-old Malik, who lost a leg to osteosarcoma. His prognosis is awful. The cancer is in his lungs. But he grins so wide it’s almost blinding, and he does one arm push up contests at the nurse’s station to the cheers of the staff.
Eighteen-year-old Sarah. She is supposed to start college in the fall, but her rhabdomyosarcoma hasn’t responded to treatment. I spend an afternoon kneeling beside her, pressing gauze into the site of her bone marrow biopsy. It won’t stop bleeding, because her platelets are virtually non-existent. For hours I sit within inches of her, holding gauze pad after gauze pad as they soak through with crimson red blood, and we both pretend it’s normal, that it’s a minor annoyance, a temporary issue, instead of what it really is, another bodily failure, each one more serious than the last, falling into each other like dominoes.
Five-year-old Malika. We don’t meet her until the very end of her life. She has been an outpatient, diagnosed only a year prior with pontine glioma, a type of brain cancer with a nearly 100% fatality rate. She comes to us to die.
There are bad and good deaths. Anyone who works in a hospital knows this. The fact of Malika’s death is horrendous, but the way she dies is one of the good ones. Dozens of family members hold a vigil in the room. They are loud and boisterous. They surround Malika’s mother with sound and laughter and the physical reassurance of their bodies. They cry, but they also tell dirty jokes and break out into raucous song. They tease the nurses and arrive with food and drinks at all hours of the night. Malika’s mother talks and smiles with them as she cradles her fading daughter in the hospital bed. The child’s breathing is irregular, her eyes unfocused, but otherwise she rests in peaceful unconsciousness in her mother’s arms.
I tiptoe in and out of the room for two long January nights. I give her boluses of morphine when her breathing grows ragged. I place a small mask over her face to administer nebulized fentanyl. I check in with her family, refill waters and snack bowls.
Every time I open the door, I pause and wait for the sound of her shallow breaths to echo back at me across the dark room. It feels like standing on the edge of a vast blackness, waiting for a flicker of light. I hold my breath, for what feels like hours. I hold my breath until I see that tiny burst of light. For twenty-four of the longest hours of my life, I live in terror that I will open the door and there will be only blackness. I’ve only been a nurse for a year. I’m not ready to place my hand on a mother’s back and whisper in her ear that her five-year-old daughter has died.
I could be a nurse for fifty years, a hundred, for millennia, and I would never be ready for that.
• • •
There’s another name for report. We also call it “hand off.” I’ve always preferred that term, because it’s more apt, and so human.
We don’t simply rattle off a list of data and symptoms. We take an entire person, and the vast, infinite universe contained in that person, and we hand that fragile, delicate universe to the next nurse.
It’s an enormous act of trust, the most sacred part of the profession. There’s a reason it’s not only a violation of ethics but also the law to leave work without handing off a patient. It’s called abandonment.
Because they do belong to us. After all these years I know that now. Their stories belong to us, despite what we’re told, despite patient privacy laws that would have us stay silent. I simply can’t leave these children behind in the recesses of memory.
Because can’t you see that they’re still there? Caroline and Matt, Justin and Malika, all of them, all of the dozens of children like them, who we watched live and die. They fill the rooms and halls. They are so real in their stories that it makes it impossible that they could not still be here. They exist and live, and every word I speak feels like a heartbeat, an expansion of lung tissue, a surge of blood through veins.
There was so little I could do for them as their nurse. I tried. We all tried. For so long and for so hard. In the end we were spectators.
I have only one tool now, one intervention. It still isn’t enough. It will never be enough. But I can speak. I can share their stories, let them live and breathe in the spaces between my words, find a way to bring them back, pale and sick but stubbornly, insistently alive.
And so here is my list. Here are the names, the brutal and beautiful moments, the gorgeous children, the bodies that failed them. Here are the days spent under fluorescent lights with the smells of bleach and urine and alcohol, the days that were good, when we won, when we saw them out the doors and prayed, desperately, we would never see them again. And here are the days when we lost, the broken days filled with morphine and Ativan and labored breaths, when this world and its rules became incomprehensible.
Here is my report. Take it from me. Take them and don’t let them go.
Elizabeth Becker is a writer and registered nurse. She graduated from the College of Charleston with a degree in English and Creative Writing in 2008 and received her BS in Nursing in 2012. She worked for four years as an inpatient pediatric RN before leaving to stay home with her two young children. She works as a freelance writer and journalist, and her essays have appeared on Motherwell, Motherly, Mothers Always Write, and Scary Mommy. She is currently at work on a collection of essays about her experiences as a nurse.Image by Daan Stevens