By 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.