Tag Archives: Leukemia

Duetting: Memoir 29

Duetting: Memoir 29 Robin Botie of Ithaca, New York, photoshops an illustration of her child in the hospital with cancer holding her favorite stuffed animal.

A good lifeguard is a dry lifeguard. Meaning: a good lifeguard is diligent in predicting and preventing trouble. I remembered this from my training days at Camp Scatico. Waking up on a Sunday, I had my cry, did my morning hike, loaded up the car for the week and took off for Strong Memorial. By the time I parked, I had morphed back into my Strong mode. Starting the week off on the right foot, I climbed the eight flights to the ICU, and was on guard again. Ready to meet trouble. I would handle anything Strong sent my way that week.

The Red Cross books on life-guarding and first aid list the first step when you arrive at the scene of an accident: “Survey the scene for danger.” I always got that. My skills in diving underwater and hauling frantic victims to shore were questionable but surveying for danger came instinctively. Always wary of what might lie behind a closed door, in a bag left on the road, at the bottom of a kitchen sink filled with murky water, or in an old takeout container abandoned in the fridge, I exercise caution. So on that Sunday afternoon, arriving back at the hospital, I knew immediately something was wrong.

First clue: Marika’s father and his wife were still there. They wore twin frowns. Marika had been taken off the ventilator earlier that morning, recovering after two unconscious weeks, and now the monitors sat silent and still. I quickly pushed through to her bedside.
“Hi Mom,” she said in a voice higher than I expected. She smiled joyfully at me.
“Hi. Are you okay, Mareek?” I asked, my own voice rising in pitch to meet hers.
“Puppy.” She said, holding up her stuffed animal. I looked back and forth from Marika to Puppy to Marika again, to size up the scene: my Marika smiling at me, waving Puppy. Smiling. At me.
“Hi Puppy, it’s good to see you again.” I shook Puppy’s threadbare paw. Marika eyed me expectantly as I continued making a mental snapshot of things. Skirting familiar territory, in my special education teacher voice I asked, “Umm, can you count to ten, Mareek?” The situation was strange only because it was my own daughter I was assessing. Off on the side, her father was holding his head.

“Okay,” Marika said eagerly. “Okay. One, two. Three. Mom, Puppy.” She shoved Puppy at me like when she was three years old and wanted me to make Puppy dance. Baby Marika. Yow. What was happening? My little girl was back. And she liked to say “okay.” And now she wanted to sing. So we sang.

Surprisingly, Marika could remember many of the words to past camp songs and from beloved Broadway musicals. She now had me working hard to remember the words to Joni Mitchell’s “Circle Game.”
“An’ go around an’ round an’ round an’ round,” she was stuck like a broken record until I finally changed the tune.
“Oh the sun will come out,” I began an old favorite song by Charles Strouse and Martin Charnin from the musical, Annie, and she joined in. “Tomorrow. Betcha bottom dollar there’s no sorrow, come what may.” I held Puppy up and she watched, totally engaged. “Just thinkin’ about, tomorrow…”
“Keep her singing. It’s improving her breathing,” said Robert, the nurse who was adjusting the monitors next to us.
“Lah la la-la … hang on ‘til tomorrow,” we sang.
“Keep it up,” Robert encouraged, “It’s definitely helping.” Marika and I continued, both struggling to remember the words.
“La la-la-la something—something—sorrow,” we sputtered and came to a stop. And suddenly a deep baritone voice resounded around us,
“When I’m stuck with a daaaaay that’s gray and lonely, I just stick out my chin and grin and saaaaay—Oh—,” Robert sang with gusto, with hand gestures. We picked up our cue.
“The sun’ll come out tomorrow, so ya gotta hang on ‘til tomorrow,” the three of us sang loudly. “Tomorrow, tomorrow, I love ya, tomorrow! You’re only a day a-way!”

“Bravo!” I cheered, and turned to Robert. “You’re brilliant. You know all the words.”
“You wanna know how many school musicals I sang in?” Robert said. “I know all the words to everything. But I think we have to stop singing now. It seems to have increased her heart rate.”        

I assumed Marika was just dopey from the lingering sedation, and that she’d come around shortly. But by Tuesday the Roc Docs were conducting tests to determine the cause of her change in mental status. Laurie was on the phone, upset because the doctors wouldn’t return her calls.
“I’m not used to being an obnoxious, interfering relative, but if that’s what I have to be, I’ll do it. I’ve had a few patients die in the past twenty-nine years, and I can’t help but wonder whether the outcome would have been different had I spoken up and made the specialists listen to me,” she said. “I don’t ever want to feel that way about Marika.”

I’d forgotten one small detail in reporting back to Laurie. The doctors wouldn’t speak to her because Marika had arrived at the hospital this time with her friend instead of me, so the forms listing who should be privy to her medical information didn’t have Laurie’s name added. And now there was intense bleeding, nosebleeds so severe they made Marika’s blood pressure drop dangerously low. The doctors put us on alert. The Red Cross called Greg back from Afghanistan to be with his sister. Diagnoses and hypotheses showered down around us. But I was looking right into the eyes of my baby Marika who could barely see me, but was happy to have me there. And that night, after her father and his wife left, Marika’s breathing rate increased. Her oxygen level dropped and her heart rate shot off the charts. Afraid she wouldn’t be able to sustain the effort she was putting out just to breathe, the Roc Docs shoved the tube back down her throat and put her on the ventilator again.

I rubbed her feet and lay low under the tent I imagined around us, sheltering us from the storm that dropped down in a tumult of medical terms. “Encephalopathy.” “Aspiration pneumonia.” “Chemical pneumonitis.” “Necrosis of the red blood cells.” And “leukemia cells in the spinal fluid.” They drifted beyond our small world where I alternately rubbed her feet and snuck around the tubes and trappings to come closer, to sing into her ear in a high choked whisper, “The sun’ll come out tomorrow, so ya gotta hang on ‘til tomorrow….”

 

Reply to Robin

Duetting: Memoir 18

Robin Botie of Ithaca, New York uses Photoshop to illustrate the journey with her daughter through the wilds of cancer.Depression affects the immune system. To survive bad luck, boredom, painful procedures, endless blood transfusions, and long hospital confinements when it seemed everyone else was out dancing, I conjured up all sorts of distractions for my daughter. Part of my mission was to make something magical happen each day. So I pretended the hospital was our summer resort. The lobby was an esplanade, perfect for people-watching, with the prevailing aroma of roasted coffee, and a player-less piano trilling away. The information desk was our concierge, offering restaurant menus for takeout dinners. Complimentary prune juice cocktails and ice cream cups were always available from the unit kitchen, a few doors down from our somewhat-less-than elegantly appointed room.

“If you could makeover this room, what color would you paint it?” I asked, wanting to draw Marika into my fantasy. She rolled her eyes at another of my stupid questions.
“Orange,” she grunted.
“What about the floor? Orange too?”
“Carpet.” Then she added, “And I’d make this a double bed with a real mattress.”
“I’d put a fridge in over there,” I said, grateful to get her engaged.
“Yeah, and a bar. I could use a martini.” Speechless, I looked at my just-turned eighteen-year-old daughter and wondered how many martinis she’d had.

When allowed off the unit, we escaped to the meditation room with its cool blue-green lights and crocheted blankets that hugged two stuffed chairs. I wheeled her to an indoor courtyard near the far-off dentistry wing. We roamed the endless hallways, searching for the chapel in the depths of the massive Strong. We tiptoed to the newborn babies’ window and peeked through the slats of drawn blinds to watch the tiny wrapped bundles wriggling or peacefully still.
“You were the most beautiful baby, Mareek.”
“I know,” she said, engrossed in the newborns.

“Where are they?” She growled impatiently. We were stranded in the radiation department, waiting for the transport team to take us back to the room.
“Okay, it’s been over ten minutes. I’m kidnapping you. Hold onto your hat,” I said, whirling her wheelchair around.
“Mom! Whoa, what are you doing?” she sputtered as we zigzagged wildly down the hall. “Do you know where you’re going?”
“No, but I bet I can get us back by lunchtime,” I said, surprising myself by my desperation to stave off negativity and the ensuing insults to Marika’s meager immune system. On the way to the room, we meandered through the fourth floor pediatric hall where the walls were painted in bold colors and plastered with distorting mirrors and protruding animal sculptures that begged to be interacted with. Then we were at the door to the Ronald MacDonald rooftop playground. It was deserted so we sat outside in the middle of the chain-link fenced-in yard, four floors up. From my backpack, I removed two tiny containers I’d carried around for days for just this opportunity. We blew filmy, fragile bubbles that flew off into the wind.

“Should I fetch cooked sushi for dinner tonight?” I asked in between bubbles.
“I want steak,” she said, adding “for lunch.”
“Well, if I get lunch take-outs we’ll have to eat hospital food for dinner,” I reminded her. That was our deal: eat hospital food for breakfast and lunch, eat well for dinner. “But,” I offered, “I might be talked into sharing a frozen latte from the lobby after a hospital lunch.” She scrunched up her face and declared,
“Double iced mocha with chocolate ice cream. I want my own.”
“Deal. Do you think we’re locked out?” I asked, nodding toward the door that had closed behind us when we went outside, a last-ditch effort to throw in some further intrigue.

Friends were the best diversion. They occasionally made the two-hour trip from Ithaca to Rochester. Cassie, Carla, Shoshana, Golda, Jeff, Julie, Lamarr, Rachel, and more. Cassie brought an enormous stuffed dog. Carla brought Silviana. Julie always climbed into bed with Marika. There was lots of pizza and Chinese food. And laughter. I left the room most of the time when her friends came. But not before I scanned them for signs of pinkeye or colds.

As it got closer to college orientation, the visits died down. Except for Rachel.
“How’s she doin’?” Rachel asked from Ithaca, ninety miles away.
“Well, it’s funny you should pick this moment to call. She’s in radiation right now. She had a high fever last night and we’re waiting to see…”
“Well tell her to cool down,” she said, “and tell her I miss her.” They called each other “Wifey.” Rachel, a year older, had recently passed her Emergency Medical Technician training. When not in college, she worked for a local ambulance company. I felt totally comfortable sharing the details of Marika’s condition with her. Especially since she always found us, whenever Marika’s health crashed, wherever we landed.

Several times a day, I rubbed Marika’s feet. She didn’t like asking.
“Mom.” She would shamelessly wave a foot in my face and frown pathetically. Foot rub.
“How do you do that with your mouth?” I asked, trying to mimic her pout. “It has to be a short one. I have to write a paper for my class.”
“Why don’t you pull the cancer card?” she yawned.
“What cancer card? What’s a cancer card?” I asked. She smiled with closed eyes, and wiggled her toes in anticipation of the foot-rub.    
“Just tell your teacher your daughter has cancer, Mom. Then you won’t have to work so hard.”

Marika never had to do much to get me to rub her feet; it was the only time now, other than grasping hands when she got shots, I could touch her. So I rubbed her feet when I was nervous, when she was tired, after breakfast, before bedtime. It was a dance of my hands over her soles, a meditative prayer tracing around her ankle bracelet, holding her heels, pulling gently on each of her painted toes. My thumbs lightly pressed butterfly-indentations over the balls of her feet. And finally, I’d slip-slide my palms along the curves of her arches, massaging those sweet feet over and over as though I could knead the cancer out. On hearing bad news, I’d grab her feet. It was my way of hugging her.

 

 

 

REPLY TO ROBIN

Duetting: Memoir 12

Duetting: Memoir 12If the muskrat digging holes in the banks of our pond were to continue to bore a tunnel clear through to the other side of the earth, it would end up in the Indian Ocean off the southwest coast of Australia. Marika had picked the farthest place one could go from our cozy home in the hills surrounding Ithaca. But on our first forays into the jungles of cancer, we were being carried off to a world even farther and more foreign, and there was no knowing what awaited us on the other side of it.

To me, cancer was the demise of ancient neighbors, the terrifying realm of beloved grandparents. It wasn’t supposed to happen to one’s child. Although there was Marika’s father’s brother who died at age six, of a brain tumor, over forty years before. How could my daughter have cancer? All I could think was what did I do, or not do, to cause this? Visions of all the used and refilled water bottles in Marika’s room kept haunting me. Dozens of plastic bottles on the floor, in her gym-bag. In the hot car, festering toxins. “That can’t be good for you,” I’d mentioned to her, casually, way before cancer. What kind of mother was I that I hadn’t kept my daughter safe and healthy?
“Laur, you tell Mom. Okay?” I begged my sister, as cancer moved into our lives, clobbering me with guilt. And shame. I couldn’t face my own mother.

Everything Laurie read about Marika’s type of leukemia said that once identified, it should be handled as a medical emergency. By the time it was diagnosed, Marika’s disease was already advanced. Aggressive. So after one night in our local Cayuga Medical Center we dashed up north to Strong Memorial, a teaching hospital at the University of Rochester Medical School. But before she could escape the Ithaca hospital, Marika­­­ had to undergo the cancer novice’s initiation, the bedside bone marrow biopsy.

Marika lay prone in the hospital bed, waiting for the inevitable pain. We both saw the tool. It resembled the antique hand-crank drill I inherited from my grandfather, a carpenter in the 1930s. The doctor marked a spot inches above her tailbone. He braced himself. I held Marika’s shoulders down. He drilled. She shrieked. I cried, silently beseeching him to hurry up. Her face and neck turned red. I focused on the tiny waterfall that scaled her cheek and trickled off the tip of her nose, creating a wet blotch on the sheet. I wondered how they knew I wouldn’t faint. It was taking forever. And when the longest ten minutes of our lives were over, and after the required twenty minutes to stay very still ended, Marika grabbed the nearest thing, a box of tissues, and threw it forcefully at the wall where the doctor had stood.

So by the time we got to Strong Memorial and met that week’s squad of the always-rotating oncology team, Marika was already wary of doctors. Laurie called them the Roc Docs.
“Acute promyelocytic myelogenous leukemia, or APML, has an average survival rate of eighty-five percent,” they said, “depending on complications.” They wasted no time starting an intense chemotherapy attack. Three days later Marika developed her first serious complication. “Disseminated intravascular coagulation. DIC,” the Roc Docs reported. Marika’s blood clotted inside her blood vessels but she bled from everywhere else—every orifice on her body, through every sore, through the tender spot near her tailbone, under the retinas of her eyes, and into her lungs. Always squeamish around blood, I anxiously waited for the nurses to come back with more pads as I applied pressure through soaked gauze on one of her arms. Marika cursed through a towel she held to her nose and mouth. Leaning over to push the call button, I noticed she was lying in a puddle of blood. I did not pass out. An animated movie was playing in my head. It starred my headstrong daughter’s bone marrow that had produced lots of immature unruly cells that didn’t do what they were supposed to. Like those red cells that need to carry the oxygen, and the white cells which should be fighting infections. And her impossibly undisciplined platelets that were supposed to be clotting and stopping all this bleeding. I imagined millions of tiny-legged rebellious cells sneering, careening and carousing throughout every inch of her body. And I was thinking, Marika’s a rebel—clear to the core.

In the non-patient bathroom by the elevators, regarding myself in the mirror as I washed my hands, I saw old tired eyes. My nose usually bullied other facial features for attention, but now, small shuttered eyes glared back at me in cold detachment. I sighed and turned away from the ghostly reflection. Marika had gotten all the good looks in the family. Even sick and strung out by cancer, she still looked beautiful.

It was a showdown: headstrong Marika versus aggressive cancer. The Roc Docs pumped drugs with strange names through her. Daunorubicin Hydrochloride, Cytarabine, something called ATRA that sounded like a sneeze, and something I heard as “Harass-Sea.” There were established formulas for treating this leukemia. Complying with these evidence-based approved protocols was considered the path to beating cancer. In my head the medicines blossomed into yet more cartoon characters, like Sigh-terror-bean, Cytarabine. Donna-Ruby-Sin Hydrochloride. Reactions to these chemo cocktails could be deadly. And when the ATRA almost destroyed Marika but failed to put her into remission, they gave her arsenic instead. That one I knew. In my head I saw the dead shriveled-up mouse I’d found as a kid, on top of the mail pile. “Arsenic,” my Mom had frowned at the mouse, explaining, “I forgot to leave a holiday tip for the mailman.”

Marika had horrific reactions to everything. She retched, and wrenched in pain. I winced as she threw a cupful of pills down her throat with a fast splash of water.
“How do you do that?” I asked, remembering smashing tiny aspirins in applesauce for her just a week before. She shot me a look like I had food on my face.
“Mom. I’m a cancer patient.”

 

 

 

 

REPLY TO ROBIN

Duetting: Memoir 11

Duetting: Memoir 11 Robin Botie of Ithaca, New York, photoshops words of her daughter Marika Warden who died of leukemia.

Before leukemia, home was the place we came back to long enough to grab what we needed, whether it was a nap, a meal or a gym bag, as we rushed out again down the hill and back into the world. We rushed and everyone around us rushed. We rushed to get our homework done, to get to school on time, to go to soccer practice or to the mall to pick up some last-minute sports tape, and a fast smoothie to tide us over. As a new special education teacher, I pushed to get through paperwork that piled up too quickly, while Marika scurried between schoolwork and part-time jobs at her favorite sushi restaurant and the gym’s daycare center. There was never enough time. Maybe we liked to eat out so much because it forced us to sit still while we waited for our food.

We were foodies. She baked. I cooked when I didn’t have too much homework from my SUNY Cortland classes. I danced in the kitchen to the muffled sounds of Marika’s music. Indie rock. Upstairs in her room, where she thought no one could hear, she sang over pre-recorded instrumentals. And in the car, stuffed with singing girls, the joyful un-muffled voices made me smile as we sped off to soccer games in neighboring counties.

On the soccer field Marika was an aggressive tank, stopping at nothing to get at the ball. I winced whenever she headed it, and cringed every time she barged into another player. Marika was fierce; she was fearless. So of course she was going to fight leukemia. Early on, a friend set her up with a blogsite, Marika Kicks Leukemia. Though she lived in a dense fog the first few weeks of cancer, Marika was set for battle. She would fight her disease, her doctors, me, and anything else that kept her from living her life the way she saw it.

Life, the way I saw it, should be beautiful and function flawlessly. I always believed I could design my way into or out of anything. For me, to design is to control. It is ongoing, like breathing. Each day, before the sun rises, I envision every possible scenario so nothing can hit me by surprise. To put the most harrowing things in manageable perspective, I draw and make endless lists. There’s always a ‘Plan B’ as I bolster myself for the worst.
“I’m not worrying, I’m designing,” I insist, when accused of being anxious. And designing always started at home even though I hated being alone at home, and Marika would rather be anywhere else. But by the end of May 2008, home was where we both yearned to be.

“When can I go home?” she asked countless times as teams of doctors filed in and out of her hospital room. First this had to happen and then that—there were obstacles. It was like Monopoly, one of those endless board games we always gave up on before we could finish. We were only at the beginning of our road trip. And my mind was already racing, working overtime to find “beautiful” and “flawless,” to put them back into our lives wherever we might land. But leukemia had wormed its way into the warp and woof of our world. Cancer hit home. The tides were broken. They’d collided. Soon I, too, could not “ride along to the same rhythm anymore,” as Marika said. We were hanging over the dark craggy cliff of the gorge when Marika nearly died two times in her first three weeks of cancer.

There was no way to design my way out of that.

 

 

 

REPLY TO ROBIN

Duetting: Memoir 9

Robin Botie of ithaca, New York, photoshops the note her daughter wrote when she received her diagnosis of leukemia.Eighteen years old. I remember when I turned eighteen. Laurie, a year younger but in the same grade, was already driving. I was not. I never liked movement, didn’t trust I could survive skating, bicycling, diving, Kiddie City Amusement Park rides … I did not dare challenge gravity. Being alone, getting lost, drowning, … going downhill in any manner or losing control terrified me. There was no major trauma in my memory, but I lived in dread of the bad things that could happen. I might fall. The ground beneath me could breach. There could be blood and it would hurt. I could die. I was afraid of it all. Nonetheless, at eighteen I had a life. Laurie and I had friends, parties, places to go. We had jobs and were getting ready to go off to college. Home was smothering. So close to freedom and independence, we counted the days ‘til we could come and go as we pleased, ‘til we graduated and got away. At eighteen, with all my trepidations, the worst thing I could imagine was being stuck with my mother. In a hospital. For months.

“Mom, I’m going on a road trip,” Marika had announced the summer before the diagnosis, shortly after she passed her driving test.
“I don’t think so,” I’d said.
“But Carla and Silvie are going.”
I called Silviana’s mom to confirm.
“Paula, did you say yes to the road trip?” She had. And I saw nothing but white-flashing warning lights. Until I heard her plan. In our mother-daughter crowd, if there were valuable lessons for our children to learn, we would creatively bypass saying no. We came up with a compromise. Silviana, Carla, and Marika took their road trip to Rehoboth Beach in Delaware, six hours away. And Paula and I followed them, in Paula’s van, three to four cars behind. We all stayed in the same hotel. We pretended we were not related. Paula and I were given the room next to our girls, unbeknownst to them. They whooped and warbled all night long. Eighteen. Free from moms. Except at dinnertime when we’d meet up in restaurants. Dinner is always the time to convene in peace, over good food. No matter where you are or whatever else is going on.

Three weeks before the diagnosis, Marika had totally disowned me. And my rules. She had a forbidden party while I was on an overnight hiking trip. Coming home to the fumes of Lysol, I roared about the horrific state of my house. I didn’t acknowledge what must have been a gargantuan effort to clean up. More worried about the house than her safety, the ordeal of her trying to contain an out-of-control situation did not occur to me.
“Mom. So what. So my friends smashed the Adirondack chairs. So they threw the stove burners into the pond. They left a few cigarette burns on the deck. Get over it!” She had told me more than once to go fall off a mountain, go drown, take a long hike and get lost. “Get a life, Mom.” Cracks of white lightning stabbed me when she spoke like that. It used to make my hair stand on end for hours, but over the last few years my neuro-receptors had worn down. By the spring of 2008, I rarely even winced at her caustic comments.

Marika didn’t always act like a brat. Like two weeks after the forbidden party, on Mothers’ Day, I arrived home from a hike to a trail of Hersheys chocolate kisses leading from the front door to all over the house.
“Mom, you hafta follow the chocolates and read the clues to find your present,” she’d said, grinning proudly. And fifty chocolate kisses later I found Caesar salad, seafood linguini, flowers, and candles on the table. And a chocolate cake. “Sorry, it’s a Wegmans cake. I didn’t bake it, didn’t wanna make a mess.”

The first morning at Cayuga Medical Center, the staff asked Marika for permission to include her parents in the discussion of her health. Surprised at this new authority, she shot me a delighted glance. Caught totally off guard myself, I dropped my jaw and glared at the doctor, shocked that in New York, at eighteen a kid is “the adult in charge.” My daughter had the right to exclude me from being involved in her medical treatment. Marika held her stuffed Puppy in the crook of her IV-laced arm as she agreed to include her parents and Laurie. It was her first medical decision as an adult. She got that one right. So there I was, and we were about to start a journey. Except for short weekend breaks when her father and his wife relieved me, I would be right there.

And I would not want to be anywhere else. Nothing could keep me away. Not her cursing and calling me names, not blood or vomit. Not the prospect of late nights on emergency car rides to some who-knows-where hospital with frantic interruptions to find a restroom. Or her angry evil eye if I said the wrong thing. In my mind I was thinking, road trip. We were taking a long road trip. Together. I knew it would not be easy or fun now that she had good reason to be cranky. But it would not last forever. And it was my last chance to be there for her. With her. Before she grew up and moved out of the house completely. This was where I wanted to be, where I had to be.

 

 

 

REPLY TO ROBIN

Duetting: Memoir 8

Duetting: Memoir 8 Robin Botie of ithaca, New York, photoshops purple bruises big as peonies on her daughter who died of leukemia.

“Mom! Get a life!”    
Marika always said this. It was her self-preserving way to end a losing battle, a clean exit that always rendered me speechless. Rolling her eyes, she would bark, “Mom. Get. A. Life.” My just-turned-eighteen-year-old daughter enunciated each word sharply. Like four smacks to my face.

On a spring evening in May 2008, soon after we’d had one of our regular disagreements, she shoved the phone at me. It was my sister. Again. The sister who’s a doctor outside of Boston, Marika’s longtime ally and confidante. She called Laurie every time monster-mom did something disagreeable, like say No. So I was ready to hear the retelling of my latest offenses.
“Put your glasses on and look at Marika’s face,” Laurie said, with no greeting, no preamble. “You’re looking for tiny burgundy snowflakes the size of a pinhead, around her eyes maybe.” I peered closely at my daughter’s pouting teenaged face and peeked at her neck and shoulders, aware we hadn’t been on touching terms the past decade.
“Laur, those burgundy snowflakes? They’re all over her. Hundreds. Everywhere.”

Geese were nesting. Hundreds of spring peepers, tiny frog-harbingers of the season, cheeped loudly into the night. Blooming lilacs perfumed the air as irises poked through growing bursts of greening foliage. And tiny burgundy snowflakes blossomed all over Marika. Along with purple bruises, big as peonies. Amid the budding and blossoming, disaster hit home. It had chewed on Marika for who knows how long. It shot darts through her head, planted renegade cells in her blood, rooted itself and grew.

I didn’t know. The past two weeks, when Marika mentioned headaches and being tired, I thought she just didn’t want to do her homework. But that evening, when she could no longer blame soccer for her excessive bruising, and couldn’t ignore the headaches or the fatigue, she’d phoned my sister. On the phone, from over three hundred miles away, Laurie could paint a clear picture of anything. Like petecchiae, the burgundy snowflakes running rampant over Marika.
“Get to the hospital now,” Laurie said, after listening to our dozen reasons why we wouldn’t be able to see a doctor in the morning. So we dropped everything and made a mad dash to our local emergency room, where Laurie phoned in a request for tests. An hour later she called back. And then—BAM! Leukemia.

It whacked the life we knew inside out and upside down.

Everything always revolved around Marika. She had a way of using up all the oxygen and energy within a considerable radius around her. She’s the one who got picked from the audience whenever a volunteer was called for. She was the one who came home with prizes: a bottle of champagne, a huge stuffed teddy bear from a local carnival. Her fierce determination landed her jobs and favored roles in school plays. Her smile, or maybe just plain luck, got her into situations where I could only shake my head in wonder.

I fretted about how soon she would leave home for college. I savored each soccer game and every opportunity to be a part of her life as she inched farther away, fighting to be free of me. The last stretched-thin string of glue tying us together was our connection to a strong tribe of mothers and daughters who, after years of play dates and carpooling, still got together for theater, out-of-town adventures, and dinners. Paula and her daughter Silviana came over with DVDs and chocolate the first night of leukemia, when the hospital sent us home to pack our things. Overcome with fear, Marika had called them. I was surprised to find them at our door. For me, oblivious to medical crises since Laurie always handled those, it didn’t register right away that here was something to be afraid of. We stayed up watching movies with Paula and Silvie all night before we left home again to enter our new reality of hospitals, doctors, and drugs.

The next morning, at Cayuga Medical Center, a mile from our house, Marika’s friends piled onto the bed with her. Her long hair shone, her cheeks blushed. She laughed. She had played soccer just the day before having next to no platelets and fifteen times too many white blood cells. This whole mess must be a mistake, I kept thinking. But I knew Laurie didn’t make mistakes, not like this. And she was working diligently now on the phone, with us, with the hospital, with her colleagues and resources in Massachusetts. What was leukemia anyway, I wondered? Something to do with bad blood? I didn’t understand a thing about what it meant but I felt my insides steel against some vague looming catastrophe. I sat stunned, immobilized. It wasn’t until the tall, dark storm that was Marika’s father lumbered into the hospital room, that I knew this was real.

 

 

 

REPLY TO ROBIN