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.

How People React To My Son’s Chemo-Baldness

How People React To My Son’s Chemo-Baldness

By Nicole Scobie

0-6I hardly notice anymore that my son Elliot has no hair. I do notice people’s reactions when they see him, if we’re at a restaurant or a store, and his hat falls off, or he takes it off, since he doesn’t really care. Sometimes, there’s a double-take. I’m not always sure what people think. I guess, looking at him, you would know right away that he’s a cancer kid. Although you see a lot of kids with crew cuts and even shaved heads these days, he has those few little wisps of fur-like hairs that are the tell-tale signs of chemo treatment.

Every now and then the subject comes up when he’s around, but it doesn’t seem to bother him much. His first reaction to losing his hair was how funny it was that he looks like his dad now. I’m not sure Martin was ever so proud as that moment when Elliot saw his reflection and said in surprise, “Hey, I have almost no hair! I look like Papa!” then laughed and walked away. He has been relatively unaffected by the change in his looks. We’re careful, however, when the subject is mentioned and he’s around, to always say something positive about it. He’s only five-years-old, and not yet very aware of the importance people place on appearance, but he is at the age where he is starting to understand the meaning of “fitting in.”

Recently, a friend was visiting and mentioned that it looked like Elliot’s hair was growing back already (a temporary event since he’s still in chemo, sometimes it does seem to be sprouting up again like tiny weeds, then a week later he’s so bald his head shines). Both Martin and I chimed in with our automatic remarks, something like, “Yep, it’ll grow back at some point, but in the meantime, he’s so handsome with those big blue eyes.” Sometimes we talk about how nice a head shape he has, or how great his ears look. And it’s all true, too. We actually find him to be quite a good-looking kid. So we’re not lying or exaggerating his eye-beauty etc., it’s just a clever rebuttal, a re-direct.

But I actually don’t think the baldness issue is about looks, for most people. Even in the non-cancer world — you know, that world we all used to live in, going about our daily business naïvely thinking we were safe from … everything? Even in the non-cancer world I think any negative view of chemo-baldness is really an instinctive judgment about health, not beauty. People associate this type of baldness with being sick. And, to be fair, it is often a pretty accurate instinct. But the fact is, there are many times, despite those rotten cells causing trouble, when a person with cancer does not feel sick. At least not throw-up sick. Any of you out there by the way have levels or categories of sick? Like, throw-up-sick versus just lie-on-the-couch-too-tired-to-push-the-button-on-the-remote sick? Just curious, as I’m not the one with cancer in our home, I can’t judge for sure.

But since I do know that many times, a cancer-boy (or girl) does not feel very sick, we are sometimes out in public. Often I won’t take Elliot anywhere where there might be a lot of people, if the blood count is low. But other times, we do go to restaurants and stores, even the occasional playground if we’re feeling particularly invincible. And recently, that’s when I started to notice them. Well, the lack of them, actually. The others. The other baldies, like my son. I know the statistics: childhood cancer is quite rare, so bumping into another baldy while at the playground is probably unlikely. But adult cancer is really so common, comparatively … so where are you all? Before I hurt anyone’s feelings, I will get off my high horse and say right away, as I have told many people, that if what had happened to Elliot had happened to me I would be tempted to go into my room and hide under my blanket and come out two years later. On the other hand, if I could trade places with him and have this stupid cancer be in my kidney instead, I would do it in a heartbeat. But that’s not possible.

So we head out “into the world” today and I wonder where everyone is. I would love to bump into a bald person. Seriously. I mean, obviously, I am into balding men anyway, but man would I like to see a woman or man wearing a scarf or hat like Elliot. Or just nothing. A nude head, parading around proudly in public for all to see. Wow, would that ever make me happy.

But generally, we never do see other cancer-fighters out there. Until yesterday. When I spotted one. We were at the mall. It was raining out, and we got bored at home (just how many Legos does it take to build the Eiffel Tower, I will never know).

A woman came over and sat next to me on a bench near the kids playing area where Elliot was running around. She was wearing a long silk scarf beautifully wrapped around her head. She did look pale, and maybe a bit thin, but actually pretty good. I didn’t say anything, but was silently excited. How could I convey to her that I am also from “that world?” Damn my hair.

Elliot ran over to ask if we could get an ice cream. He was wearing the blue sunhat with the octopus on the front (by the way, the octopus must absolutely be placed at exactly the correct frontal position or a tearful crisis will ensue. Cancer reaction or normal five-year-old? Anyone?)

With his hat it’s hard to tell he’s bald. He stared blatantly at the woman. Then he turned to me and said, and I am sure he spoke at least 10 decibels above his normal voice volume: “Hey, she’s bald.” I started to feel a bit hot. The woman cleared her throat. She looked at him and smiled quietly. He took that as an opening for him to increase the volume by another 20 decibels or so and asked her, “How come YOU have no hair?”

Now, I knew why he’s asking. He wanted to chat with her about baldness the way he would otherwise chat with a friend about Playmobil. Baldness is familiar to him. If she had a visible scar he would have probably happily lifted his shirt up to show the one that stretches across his abdomen.

But the woman didn’t know that, she just probably thought he was another innocent five-year-old asking an innocent question, and in a show of remarkable patience and probably practice she calmly said, “Well, I have to take medicine that made my hair fall out. But it will grow back after a while.” Then she slowly got up to go while Elliot stared at her with his “duh … I knew THAT” look.

And just as she started to walk away he called after her. “Well it’s good that you have nice eyes!” And she turned and stared at him a bit.

I love him.

Nicole Scobie, mom to three great kids, one of whom is luckily in remission from stage 4 cancer of the kidney.

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