WO Wings ARTBy Elizabeth Knapp

This is a story about the one who was brushed aside, the cancer child’s sister…

Four years ago on Valentine’s Day, my four-month-old daughter Molly was diagnosed with infant leukemia.

Four years ago on Valentine’s Day, my older daughter, then four years old, came home from preschool with her first bag of Valentine’s Day cards, brimming with happiness. She kicked off her boots, shrugged out of her puffy winter coat and before I could remind her to hang it up she spilled her many, lovely valentine cards out onto the hardwood floor, rifling through them to show me certain ones.

Then she noticed that her aunt and cousins were there. She noticed her baby sister was sleeping, her head lolling on my shoulder, instead of watching her with wide-awake eyes. She noticed that I wasn’t smiling.

“What’s wrong, Mommy? Look at this one! It’s made from a doily and it has my name on it! And why are my cousins here?” She fired questions at me.

I passed Molly to my sister-in-law and knelt down to be at her level, my heart breaking as I stuffed the cards back into their paper bag without looking at them. “Something’s wrong with Molly. She’s very sick and Daddy and I need to take her to the hospital. We might be gone all night. But you get to have a sleepover with your cousins tonight! Won’t that be fun? You can bring your rolling bag.”

She looked at me dubiously. “Can I at least show you my valentines before you go?”

Tears welled up, threatened to drip down my cheeks. I pushed them away and told her that I couldn’t look at them right now because Daddy and I had to leave right away, but I knew her cousins would be thrilled to sort through them with her. That I would look at them as soon as I could.

We went upstairs together to pack pajamas and a change of clothes. Her special stuffed lamb, Little Lamby, was to ride in the bag with the valentines. We packed her toothbrush and no-pull hairbrush. I took Molly back into my arms, kissed my reluctant and teary older daughter goodbye and watched from the window as she trudged out to the car with her cousins.

This could be a story about my baby who had cancer, but it’s not. There are other stories about that, stories about her scars, about how she almost died twice and then didn’t. Stories still to be written about the days, weeks and months during which we vacillated between fear and hope, dread and desire, boredom and anxiety. Stories that are so filled with horror I wish they were not mine to tell. I wish no one ever had to tell them.

This is a story about the one who was brushed aside, the cancer child’s sister, the one who went to preschool one sunny Valentine’s Day filled with the promise of a party and came home to have all her beautiful cards stuffed back into their drab paper bag. At least it had her name on it, looped in fancy letters: Amelia.

Amelia: my first born, my copper-haired firecracker. Amelia, who threw me into motherhood, introducing me to depths of patience, rage, love and joy I never knew existed. Amelia, who cried for ten months straight until she could crawl. Then, finally able to explore her world on her own terms, stopped crying and began to speak.

At the time Molly was diagnosed with cancer, Amelia was obsessed with fairies. She begged me to read books about fairies again and again and again. She drew fairies and wanted me to cut them out, demanded I talk for them so she could ask them questions. After being in the hospital with Molly for two days and two nights, I knew I had to go home to Amelia. But how do you explain leukemia to a four-year-old? How do you tell your daughter that her sister is just about as ill as a person can get and still be alive?

I made up a story about the fairies. Once upon a time, I told Amelia, there was a family of fairies: a mom, a dad and two sister fairies. One day, the baby sister fairy became very sick. Something happened and her body couldn’t make healthy blood anymore, and all fairies know that if a fairy can’t make healthy blood she gets very, very ill. The baby fairy had to go to the fairy hospital. The doctors at the hospital had to give her special medicine that seemed to make her even sicker but actually, they hoped, would make her better. It was red, and they had to put it directly into her blood.

The baby fairy sister, stuck in the hospital with all this medicine that was supposed to make her better but made her body feel terrible, lay around all day with her wings drooping. The mom and dad fairy were always fluttering over to the hospital, worried about the drooping wings and also worried that their big girl fairy would think they didn’t love her anymore when, in fact, they loved her so much their hearts ached every time they had to leave her. It turned out that the only time the baby fairy’s wings didn’t droop was when her sister fairy was visiting. So it was very, very important that the big sister visit her as much as possible, because all fairies know that you can’t get better if you have constantly drooping wings.

I had to stop here because I was crying too hard to continue.

The weeks that followed developed into a pattern. My husband stayed at the hospital Thursday to Sunday, and I was there Sunday to Thursday. Here is what Amelia remembers about that time. When I was home, we slept together at night, she and I. I had to wake in the middle of the night because, as a breastfeeding mother away from her baby, I needed to pump milk for Molly. Amelia, so in tune with my rhythms, would wake with me and follow me downstairs, the steady whoosh-pop sound of the pump lulling her back to sleep, slumped next to me on the couch.

On switch days, when John and I swapped duties, Amelia would usually come to the hospital, too. Molly’s eyes would light up when her older sister came into the room. Amelia learned quickly to be mindful of the IV lines. She got to know the nurses and the child life specialists, where the art supplies were kept and that the patient kitchen was always stocked with popsicles and ice cream. Sometimes the two of us would explore the hospital, tunneling through dark hallways and popping out in unexpected places. One cloudy spring day, we found our way a secret garden surrounded by towering hospital walls. On warm days, when Molly was well enough to leave her room, we took her with us, her IV pole bumping over the walkway.

After Molly came home, Amelia learned to live with uncertainty. Any fever in a cancer child is cause for a trip to the emergency room. Which also means trips to the emergency room for the sibling. Bringing Amelia with us meant that we loved her just as much as Molly, that she was an integral part of our family, too important to be left behind. Trips to the ER were an adventure for her and she was a distraction for us. As a cancer child, Molly had top priority in the ER but once we were in a room, there was lots of waiting and wondering and sitting around. Amelia’s presence cheered up Molly and made it impossible for us to sink into our own gray worlds of worry and fear.

Once, Amelia received a trophy from an organization that supports siblings of kids with cancer. It still sits in the center of her bureau. “AMELIA,” it reads, “SUPER SIB TO A CANCER KID.” And even now, four years later, when asked what makes her special she replies, “My sister had cancer.”

I have to believe that my thoughtful, serious firstborn baby has learned things—about compassion, about rolling with the punches, about finding your place when the world is not about you—that she may not have learned had her sister not had cancer. She played with kids in the playrooms with smooth, shiny heads like her sister’s, kids in wheelchairs whose cheeks were swollen from long-term steroid use, kids whose IV poles clattered after them wherever they went.

This story began with the cancer child because when you have a child with cancer their sibling, heartbreakingly, comes second. Their valentines will sit unappreciated in their bag. Their own plans for the day will be swept aside when their sister wakes in the night with a fever.

The year Molly had cancer, I recycled Amelia’s crumpled, forgotten valentine bag without ever looking at the cards inside. This year, four years later, Molly went to her own Valentine’s Day party and came home with her own paper bag, a fancy “Molly” scrawled across the top. She turned her bag upside down and the cards fluttered out on the floor. My two girls sat together, admiring the cards, their heads touching, blond hair mingling with orange. Watching them, I could see their wings humming happily behind them.

Author’s note: Molly is almost three years off treatment and remains cancer-free. She delights in provoking her big sister in a myriad of ways. Amelia is a curious and thriving second grader who, despite said provoking, continues to champion her little sister in every way.

Elizabeth Knapp lives with her family in a small town in Vermont. When not enjoying the antics of her two young daughters, she can be found writing, gardening and wandering the woods and fields around her house.



WO Scars art 2By Elizabeth Knapp

Molly has five scars. Scars on her neck, scars on her chest. A dimple in her lower back from a bone marrow aspiration. A small hole in her belly from which a gastric tube used to emerge. Her torso is a map of her babyhood.

The first time Molly had surgery was the night she was diagnosed with infant acute lymphoblastic leukemia. It was on Valentine’s Day, the day before she turned four months old. My husband and I had been in the ER with Molly for scarcely an hour when her future oncologist entered. He told us that the results of her blood work, drawn earlier in the day at a different hospital, had arrived before she did. He told us that we might want to sit down. John did; I remained standing and stared at him as he said the startling and fearsome words, “Your baby has cancer.” The diagnosis was given and suddenly Molly’s life flew out of our control. A flock of nurses in brightly colored scrubs rolled her away on a small bed to a procedure room somewhere in the bowels of the hospital. My husband and I were led to a dark, deserted waiting room. We were shocked, weary, frightened, confused. I pumped my leaky breasts, watched as the milk filled up the small bottles in tiny streams. We called family. We held hands, silently. We waited. Finally the bed rolled by, this time with only two nurses steering it. Dr. S., the surgeon, peeled off from the procession and sat down with us.

“I’ve placed a PICC line in Molly’s leg and a catheter in her neck.” He rubbed his eyes with his large hands. It was around midnight and he had been working on her for two hours. “The procedure went well. She probably will stay asleep for a while.”

“A PICC line?” I asked.

“A catheter in her neck?” John said.

We could only repeat what he told us, in question form.

I got a good look at my baby girl in the Pediatric Intensive Care Unit. She had so many wires and tubes attached to her, I couldn’t figure out how to hold her. Three electrodes stuck to her tiny chest, an IV was hooked up to the line in her leg, a blood pressure cuff hugged her other leg and there were two enormous tubes coming out of her neck.

A large machine was steered into the room, followed by a doctor in a sensible skirt. “Molly’s white blood cell counts are so high we can’t start chemotherapy yet. Her body wouldn’t be able to process the large amount of dead and dying cells.” I fixed my wide-eyed stare on he. “This machine will hook up to the catheter in her jugular vein. We need to take the blood out of her body and spin it to remove as many excess white blood cells as we can before treatment can start. This is called leukopheresis. We need your signature here, and here.” She handed John some paperwork. “It will be very loud, and will take a couple of hours. We may have to do it twice, depending on how clean her blood gets the first time. You’re welcome to stay but you could also try to get some rest in another room.”

We stayed. We sat on a cot, bleary eyed, exhausted, watching the machine do its work. Molly’s blood flowed through the clear tubes that snaked around the machine, then returned to her body. We later found out that she was the youngest patient at this hospital to survive this treatment.

The next morning, the tubes in her neck were removed. And there was her first scar.


My mother has a scar smeared across her chest. When she was four years old she climbed up on the kitchen counter and pulled the pot of boiling water over her as she fell. Afterwards, instead of healing, the wound became infected and she spent three months in the hospital while she recovered. She doesn’t remember the hospital stay, but I bet you anything her mother remembered it clear as glass for the rest of her life.

As a child, I never questioned her scar. It was just another part of my beautiful mother, like her fine blond hair or her bottle top glasses or her strong, narrow shoulders. She always covered up, wearing high-chested bathing suits and crew neck shirts.


The next time Molly had anesthesia I was wholly unprepared. She had been receiving chemotherapy for about four weeks and had been inpatient the whole time. John and I took turns staying with her at the hospital so that one of us was always with her and one of us was with our older daughter. Molly was scheduled for a lumbar puncture, which in later months became routine. She was five months old, on steroids, and not allowed to eat anything including breast milk. She was hungry and in a rage. Neither one of us had slept well the night before. We had been quarantined in her hospital room because her low blood counts made her extremely susceptible to infection. By the time the orderly came with a wheelchair to bring us to the operating room, I was crying, still in my pajamas, and my heavy breasts were leaking and sore. No one thought to tell me that I’d be waiting in the waiting room with all the regular people who were there for outpatient procedures, or their loved ones with normal, daytime clothes on.

After I lay my sleeping baby on the stretcher, I went into the bathroom, slipped my bra on, washed the tear streaks from my cheeks, tried to smooth my greasy, bed-tousled hair. Blotted my armpits with a damp paper towel. Then I shuffled back to the waiting room in my blue slippers trying not to cry again, trying to ignore the polite non-stares of the others in the room.

I was unable to think of anything except the way Molly’s body felt as the anesthesia went to work. She was suddenly limp and heavy and utterly still. Her eyes rolled up and closed. She would have seemed dead had I not felt her hummingbird heartbeat or her warm breath on my nose as I bent down to kiss her goodbye.

Later, in the Post Anesthesia Care Unit, she nursed hungrily and angrily, sucking milk from deep within my breasts until they were soft.  I had been instructed to hold her sideways and not prop her up for a half hour, so the chemotherapy could settle in her spine. I imagined the long needle piercing her spinal cord, both delivering poison and sucking precious drops of spinal fluid to test for leukemia in her central nervous system.


There were lumbar punctures every six weeks and so much to be angry about, but I had nowhere to direct the bitterness. No one was responsible for Molly’s illness. I had to be happy that her body was skeletal, that her blood was stripped, that sores would erupt in her mouth and down her digestive tract all the way to her bony bottom, because if she was not pumped full of all these toxic chemicals, she would die.


Almost a year into treatment, Molly stopped eating. She was still nursing, but still losing weight. She weighed fourteen pounds. I began writing down everything she ate and obsessing over calories. A typical day would include a tablespoon of refried beans with butter, two bites of avocado and a few Annie’s Cheddar Bunnies. Usually she would throw it all up. I stopped hoping she would gain weight; at her weekly clinic visit I would feel happy if she hadn’t lost any. Eventually she got down to twelve pounds. The same size as a four-month-old baby. She was seventeen months old.

A team of doctors stuffed themselves into Molly’s glass-walled clinic room and recommended that she have a gastric feeding tube placed in her belly. It was a difficult decision to make, as it meant another surgery with small but serious risks. We could have opted for a nasal-gastric tube, which is a tube that is inserted through the nose, down the throat and into the stomach. But we thought this would interfere with her eating altogether.

The two gastroenterologists worked as a team to carefully punch a hole through Molly’s skin into her stomach.  A fourteen-inch tube was anchored in her belly and coiled out of the hole like a worm. We had to tape the coil to her soft skin so that it didn’t pull. All this time, Molly was clearly in pain and not afraid to let us know it. She was inconsolable.

After x-rays and CT scans, a hole in her colon was discovered. Dr. S. opened her up yet again and sewed the hole shut with two layers of stiches. The doctor was a big man with enormous hands. He said the hole was about as big as the tip of his pinky. Another scar was slashed onto her body, vertical, two inches long, an avoidable scar, a scar about which I never stop being angry.


Now, at three years old, she looks down at her pockmarked chest and belly and doesn’t think twice about it. Sometimes she pokes at the hole where her g-tube was, delighted with having “two bellybuttons.” What will it be like when she’s thirteen, and wants to wear a bikini? Or when she’s casually changing out of gym clothes in the locker room, will the other girls whisper and stare? Will she have lovers who trail their fingers over the delicate lines on her chest, wonder in amazement and awe at her trauma? Sometimes her sister tells her the story of her scars, “Here’s where your tubie was, and this is where your port was…”

Maybe Molly’s own children will absentmindedly trace the scars, fluttering from line to line with their butterfly fingers. Maybe one of her babies will decide that the vertical scar near her bellybutton is just the right ridge to stroke while nursing. Maybe her children will see the scars as just another part of their beautiful mother.

Elizabeth Knapp lives in a small town in central Vermont. When not enjoying the antics of her two young girls, she can be found writing, gardening or wandering in the woods. This is her first published piece.