Tag Archives: parenting a young cancer patient

Duetting: Memoir 38

Duetting: Memoir 38 Robin Botie of Ithaca, New York, photoshops her daughter's poem onto a scene of driving the highway at night.

I’m an expert on fear. Long ago I defined two categories, based on how hard it hit: the immediate mind-gripping terror where one may respond quickly and with focus; and the kind of fear that festers deep inside, an ache that slowly gnaws away at one’s heart and gut. Fear is what fuels most of my functioning. It’s also what immobilizes me. I’ve learned to mostly tame it by looking ahead, asking, “What’s next?”

At the end of July 2012 on Long Island, after moving from my cousin’s place to the Ronald MacDonald House, and spending weeks wandering the halls at the North Shore Medical Center, my daughter and I were permitted to go home. We would need to make weekly trips back to Long Island. Even so, the prospect of having several days a week in Ithaca for whatever summer was left, cheered us. But shortly after arriving home, Marika developed chills and fever. We dashed to our local hospital where she was pumped with antibiotics, and then we were sent back to Long Island. Marika’s leukemic white blood cell count had climbed high off the charts. Afraid of a repeat of the syndrome that put her into respiratory failure and nearly killed her the first summer of cancer, the new Long Island team gave her a dose of a Phase Three experimental drug that was only made available to patients who had no choices left. Mylotarg was called a “magic bullet.” Unlike chemo drugs that kill or damage everything, the Bullet targeted only leukemia cells for destruction, and left the liver, kidneys, and other organs intact.

The Bullet worked for Marika in just one dose. But the trouble with the Bullet was its frequent side effect, horribly high fever. Fever that surged after a day of hibernation. Fever that was impossible to tell if it was from the Bullet or from some hidden, lurking infection. Getting close to summer’s end, Marika desperately wanted to be home where most of her friends were preparing to leave for their colleges. We both yearned to go home. Fever was the only thing holding us back.

When she was free from fever for two days, we left Long Island. It was a Friday afternoon, when everyone else was fleeing for the weekend. We slowly inched our way out as the Brit in the new GPS dragged us through the scenic route of New York City. We were stuck for hours in traffic. In the heat. Sitting in the passenger seat, excited to be going home, Marika was talking to me once again. She was pink. Maybe too pink in the air-conditioned car. Between us a brown paper bag held her meds and a thermometer. Finally out of traffic, we approached the more remote parts of Pennsylvania, and stopped for dinner.

“I’ve got a fever again,” Marika announced, removing the thermometer that chirped the now familiar alarm of four sets of three high beeps. She took a dose of Tylenol, and we downed hamburgers and cold drinks at MacDonalds, ordering extra drinks for the road. She took her temperature again, and drank another icy diet coke as I started up the car.
“Mom, it’s up. It’s a hundred-two point nine now.”
“We’re in the middle of nowhere,” I said. The single server at MacDonalds had been unable to help locate a hospital, so we got back on the road to Scranton. Marika checked her temp every ten minutes and toyed with the GPS as I drove. One hundred-three, she whimpered. I think I began to pray then.

“Mom, a hundred-three point four.”
“Are you okay?” I fixed my eyes on the road and heard my own voice getting higher.
“I’m okay,” she said.
“There’s a blue hospital sign. The blue H,” I pointed out. We drove on and on and there was no other sign. It was dusk and it was getting hard to see. I almost ran a stop sign looking for anything that resembled a hospital. Please help us. Someone. Where’s the darn hospital?
“A hundred-four, Mom.”
“Okay, another blue H, I think this is it, can you read that sign?” A one-way street and hidden entrance to a full parking lot, “This doesn’t look like a hospital. Is it? Yeah. I’m gonna drop you off at the emergency entrance.”
“No! I can wait. I’m okay,” she implored.
“Mareek–I have to park in the garage, way down the road.”
“I’m not getting out,” she hollered. So I parked illegally, as close as I dared, and together we headed into the emergency room.

“This is a cancer patient on two trial drugs with a hundred-four fever,” I screamed to the woman who seemed too calm behind the glass window at the emergency check-in. Marika was looking very gray now that she was on her feet. Someone shoved her into a wheelchair and took off with her, and I ran to keep up as they wheeled down endless halls and around corners of the strange single-story building that was unlike any of the hospitals we’d frequented the past two years. What kind of hospital was this? Now that we were back in a hospital, a part of me believed we were safe, or that her safety was out of my hands. So then the second type of fear, the gnawing, festering fear-ache, took over. It had sat heavily in the back of my mind ever since I’d been given the papers, in triplicate, labeled ‘Healthcare Proxy.’

Marika had first asked Rachel, and Rachel, knowing what it was, had turned her down. I was Marika’s second choice. Though I did not fully understand what the document meant, it meant everything to me to have been chosen over her father. I had never really considered the day I’d actually have to represent Marika or guess her wishes. But now we were in a strange hospital somewhere outside of Scranton, and Marika was burning up. I unfolded and refolded the piece of paper that lived in the bottom of my tiny purse. Was this going to be the night? Would I have to make life and death decisions for her? Tonight?

At two in the morning, when the fever had died somewhat, after tons of tests and our promise to go straight to our local Cayuga Medical Center, we were released.

Driving in the dim hours before dawn, I was wide-awake. Something had changed around us. My heart was no longer pounding but I was acutely aware of my daughter as a time-ticking catastrophe. Out the windshield, the sky was a vast ocean over the black hills scooting by. Stars shone above the deserted highway that wound toward home. The world was frighteningly beautiful. Quiet. Peaceful. And in the car, on that almost-last night in August, riding side by side the final two hours to home, Marika and I shared brief bits of conversation, too drained to keep up our usual guarded disconnection.

“I’m gonna take a road trip next summer, with a girl I met in Australia,” she said. “We’re gonna start out in Boston and visit Laurie and my friends at Clark.”
“Neat,” I said. “You think you’ll wanna try to do camp again?”
“This is before camp starts,” she said, “Yeah.”
“Well, this summer’s done.” My eyes widened, taking in the shadowy landscape as I drove. We were planning, considering, “What’s next?” and didn’t know—we had no clue—this would be Marika’s last summer. I said, “Next year we’re gonna have a real summer. No hospitals or cancer centers.”

Duetting: Memoir 34

Duetting: Memoir 34 Robin Botie of ithaca, New York, photoshops a party scene to illustrate her daughter's first apartment, and adds her daughter's poem about partying.

When I think of all the times I could have said No to my daughter, I am so grateful that someone reminded me to “pick my battles,” and that my intuition or just plain love got in the way of my saying No. And luckily, Marika’s will was stronger than mine.

She was moving out of the house. I was gnawing at my nails. Visions of dirt, lethal germs, and total abandonment of discipline clouded my appreciation of her excitement. But I knew how much she craved independence. Every single chance to be on her own had been foiled by leukemia. So now that she’d finally found a way to afford leaving home, I had to embrace her dream. The day after we learned there would be no transplant Marika began the move to her friend Julie’s apartment with her new dog and new hope.

She moved in slowly. Cautiously. First she moved her belongings. For weeks she hung out and partied at the apartment but did not stay overnight. Then, when she started to sleep there, she came back to the house for showers and meals. And she always returned home to do laundry. Whenever she arrived at the house, I stopped whatever I was doing. Something in me soared each time she showed up.

The apartment was a typical tumbledown Collegetown rental. As soon as I entered, I remembered my own best times in my first home away from my family. The sink and counters were filled with dirty dishes. Mountains of beer bottles and pizza boxes took up most of the kitchen floor. Doors were always open, heat on high, and lights left on no matter what the season or time of day. Dust. Mold. Mysterious odors and dark, dank narrow halls. A rust-stained bathroom sink with a constant drip and a shower that dared you to try to find a clean inch to put down your bare feet. A huge stained couch built to accommodate masses monopolized the living room. The place was begging for a party. Marika moved in and lit it up like Christmas. Plastic palm trees, blinking lights, posters. A psychedelic bedspread, magenta pillows and rugs. We shopped at Target for utensils and dishes to go with the lively décor. My housewarming gift.

The apartment had a high turnover and an ever-expanding cast of characters. One day two guys she’d never met moved in. Friends of friends would come and go, sometimes camping out on the couches, sometimes coupling, playing music, always coming back and partying. Rachel, escaping the stresses of relationships and school, hung at the apartment whenever she was home on breaks. When I visited, my eyes would focus past the people to the piles of beer bottles. Does Marika drink? Didn’t the doctors say, “no alcohol”?

I never knew who I’d run into. If I looked strange or out of place there, no one seemed to notice or care. Everyone and everything was in transition, on hold, waiting to see what was next. Hence, they called the place “Limbo.” And somehow community developed, which was just what Marika craved. I had to be happy for her. And she was a lot easier to live with now that we had separate homes. Was this what it’s like to have a grown adult daughter?

When Marika finally completed her move to Limbo, her puppy Suki became a regular resident too. Coming and going as much as anyone else, Suki was in and out of Facebook photo pages, another partygoer. If Suki could write a book it would be filled with parties, road trips, leftover pizza crusts, carloads of friends, couch-loads of friends, and her quiet adventures with me. Suki became my Sunday morning hiking partner when I discovered that Sunday morning didn’t exist for Marika and her apartment mates. Sunday mornings at Limbo were like the day after Doomsday. Bodies lay all over amidst decaying remains of Chinese take-outs. No signs of life anywhere. It soon became our regular arrangement, my rescuing Suki on Saturday afternoons before the festivities began.

“Mom, did you have dinner yet?” she would call just after I’d eaten. “Can you take Suki for the night? Do you have an extra set of measuring cups?”
“Sure, I’m in Wegmans. Do you need any— ”
“Sushi?”
“Okay, I’ll be right over.”

Her apartment was just a fifteen-minute drive from the house. I stopped by regularly to bring dinner or pick her up for our trips to Rochester. In the middle of the night I drove the empty streets across town to bring her home when she phoned she was sick. I kept my clothes out, ready for those calls at two in the morning. It was good to still be needed. There was always frozen fruit for smoothies, extra eggs, and bacon in my house for the mornings she woke up hungry at home. That was our deal: call when you need me. I never had to wait long.

 

Duetting: Memoir 32

Duetting: Memoir 32 Robin Botie of Ithaca, New York, photoshops a photo of Marika Warden taken by Ray Possen that depicts the lifesaving dog that was bought as a cancer companion.

“Mom, why can’t I get a puppy?” Marika asked, as we made our way to Rochester for a routine bone marrow biopsy.
“Mareek, I don’t even want a houseplant right now. We still have a lot of time in the hospital and then you’ll be going off to college again. A dog just doesn’t fit into our lives.” She sighed heavily and put her earphones back on.

Laurie called that evening.
“Robin, I’m really worried about Marika. She is so depressed. I’m serious. She needs a puppy.” (I learned later that Aunt Laurie had already promised her a puppy).
“She has a cat. And guess who ends up feeding it all the time and having to find cat-care whenever we leave home?” I countered.
“Her life depends on this puppy,” she stated, in the same tone as the doctors who insisted her life depended on getting a bone marrow transplant. In our little triad, no one of us could fight the other two united. So I finally relented. We found Suki online, near Rochester, the only female in a small litter of jolly Havanese puppies. We visited her on the way home from a day at the hospital. She was round, fuzzy, and tough, with an attitude that rivaled Marika’s. Still too young to come home with us, she lit Marika’s eyes up and recharged her heart.

Marika’s spirits were lifted even more when she got her driver’s license back.
“Mareek, I need to be in the car with you when you drive the first time or two,” I told her. The Toyota Avalon my mother had given me years before had seen better days. I’d let Marika keep it at college for her second semester. CDs and musty clothes were scattered over the seats and floors, and a cotton-candy air freshener dangled in the windshield. Marika was one of the few women with wheels in her crowd, and the car was a gas-guzzler, so an old coffee can labeled “Donations for Marika” lay conspicuously on the passenger side floor.
“No, Mom. Get a life,” she hissed, horrified at the thought of my monitoring her driving.

Unprepared for this reaction, I yelled, “Mareek, I’m about to finally GIVE you the car but you haven’t driven in months and I’m not gonna GIVE you the car until I know you’re not gonna drive it into a tree.” I gulped, surprised at my own resolve, and even more by her sudden cooperation. Later that evening she came downstairs bubbly, wearing eye make-up and a beaded necklace, a short skirt and strappy little tanktop under her worn-out gray winter coat.
“I’m recording with Russ tonight,” she shared as we negotiated the logistics of the driving. It was still light out as we pulled up to a familiar house and she parked the car.

“Mareek, I know this place. We came here for a party when you were four.”
“It’s Russ’s house,” she said, like I should have known.
“Oh, THAT Russ.” I recalled a rambunctious four-year-old flying down the banister. “I remember him. I took flying lessons with his father at the East Hill Flying Club before you two were even born,” I said. Unimpressed, Marika shot out of the car. I took over her warmed driver’s seat.

“Call me when you want to be picked up,” I shouted out the window, adding something about practicing night driving. She was gone. But her perfume, a hint of lily-of-the-valley mixed with a tanginess reminiscent of mustard, lingered after her as I turned the car to go home. I would wait for her call while she sang for hours with Russ, a percussionist who recorded his music for her so she could uncover melodies and create lyrics. She was proud of her first efforts and shared them with me in the beginning. Making music became her passion. Then it became one more secret, another thing that didn’t include me.

On the day the puppy was finally old enough to come home, the breeder held it up to us. One of the puppy’s eyes drifted sideways. Its top hair was pulled up tightly in a pink barrette. Marika and Suki curiously examined each other face to face.

“This hairdo has to go,” Marika said, pulling the barrette out as soon as we got in the car. Settling Suki in her arms for the long ride home, she cuddled and cooed, and they both fell asleep. Driving, I remembered the first times bringing my babies home. And I wondered if someone with no immune system should be housebreaking a puppy.

“Let’s go potty, Suki. Where’s your potty, Suki?” I chanted in the driveway. For weeks, I took Suki on extra walks so she wouldn’t ‘go’ in the house. I thought we’d agreed to crate-train the puppy, but one morning I brought a breakfast tray up and discovered Suki in the bed, sound asleep, nestled between the pillow and Marika’s chin. The crate sat on the floor, door shut, under a pile of dirty clothes.

When Marika’s friends went back to their colleges after the holiday break, we went off to puppy training classes at PetSmart. We sneaked Suki into the physical therapy sessions and the local hospital for the Monday morning blood draws. The nurses in the Hematology Lab fussed over them both, bringing doggie treats and cans of soda. The undercover slinking about with Suki was nerve-wracking for me but such a thrill to Marika that I allowed it to continue for months. Until the day we got busted. Suki was too big to fit in her travel bag by the time some hospital staff reported us.

Suki seemed to be the lifesaver we needed. Back at the house, we couldn’t help but laugh as Suki climbed to the tops of couches, to the shoulders of anyone sitting on the couches, and to Marika’s bed where she rested happily among the stuffed animals. And one day while Marika slept, leaving me to dog-sit, Suki and the cat cornered a mouse. When the mouse darted toward her, Suki gave a surprised squeak, caught it, and threw it high into the air. The cat and I watched in awe as the mouse fell down in the middle of us, dead. I tried hard not to love this adorable dog that was to, one day, leave home for good with Marika.