Exit This Way: Getting off the Merry-Go-Round of Mutual Pretense

What is Mutual Pretense? It is when everyone knows the party is over and the patient is dying, but all parties involved act otherwise. It is a masquerade of hope. It is denial and it is a burden. We owe medical honesty, awareness, and agency to our dying. This can be done with love. Its time to get off the carousel of unawareness. Exit this way.

He was dying, and fast — but neither of us knew it. Ten delicate, long fingers that could easily snap puzzle pieces into place just a few weeks earlier no longer flushed back with color when pressed. I leaned in to nuzzle and rabbit kiss my son’s cold nose. With maternal tunnel vision, I couldn’t see the big picture of all the pieces coming together to indicate that his body could not go on. The dire urgency of an intolerably high degree fever didn’t register. I didn’t see a life on the line; I saw a child in need of fresh, ice-cold washcloths tenderly compressed to his forehead. Another dose of Tylenol. And more time.

Two years of treatment against an aggressive form of acute lymphoblastic leukemia, diagnosed when he was six, had brought us to this juncture. You’ve heard this story before. My child’s life now hinged on the hail-Mary immunotherapy of chimeric antigen receptor T cells (CAR T cells). Chemotherapy and radiation had failed to mow down the cancerous weeds taking over his blood. He needed time for his genetically modified T cells to activate and smack down the cancerous blasts. Then, he could move on to a bone marrow transplant. We were hemmed in on all sides? How do you give up on a child and tell him he is dying?

Deep down, I understood what was happening. I knew his body couldn’t hold back the flood of disease. His blast counts were doubling daily. I was terrified, but I fought back my fears and put on a show of bravery to protect him. I’m not sure if my performance was convincing; his gentle, blue eyes, true to every child’s nature, could easily spot truths. And in the vein of the special connection between a mother and son, he absorbed my own true emotions and reflected them back, despite how I veiled them. I didn’t want to terrify him or sadden him. He had already endured and suffered so much and he was my baby, the youngest of four children. My desperate hope now was that the numbers pointing in the wrong direction were themselves wrong.

Amidst the unknown variables, there were knowns, like the clockwork of vitals taken every four hours and labs drawn every twelve. I knew to expect an RN with rubber-stopped glass tubes in hand at 12 AM and 12PM. Nightshift nurses are like ninjas. Curled in the reclining chair next to my child’s bed, I rested as a wild brush rabbit rests — ears up in vigilance, one eye open, the other closed. And yet, the nurses were able to tiptoe past me and carry out their tasks undetectable, in the dark. If not for the evening handoff, I would never have known their kind faces. The nurses were a constant, calming comfort in this time of calamity. If I knew what was happening, surely his pillar of medical team, in their steath routine, who went in and out of the rooms of hundreds of kids, like him, knew more.

Another unwavering known was the gentle tap we came to expect every day before sunrise. It was followed by the sliding sound of the glass door opening. From behind the drawn curtain peered the first-year physican du jour. Today’s doctor was on week one of his four-week rotation. The early morning dance of the pediatric oncology triad, patient, parent and provider, was still new to him. He stuck to his script and addressed me with a familiar set of questions. “How was the night? Is the nausea under control? Do you have any questions?” Then he arced over my sleeping son, leaned in close and listened to labored breathing through his rubber-coated stethoscope, both ends of the tool of the craft as shiny as a new toy.

With wary and bloodshot eyes, I scrutinized this newly minted doctor as he examined, hoping he had already learned to warm the hard, metal disk with his hand or breath, or at the very least, to touch it to his freshly pressed blue oxford shirt before placing it on my child’s delicate, discolored chest. So vulnerable and tender were my son and his torso, which lay bare before the doctor. My child was deep in a dog-tired sleep and shirtless.

He had stopped wearing his flannel pajama top some time ago because he was feverishly hot and his skin was tender. The navy and white Star Wars themed pjs were printed with TIE fighters. The pants had an elastic waistband which made going to the bathroom a breeze. The unworn top buttoned up — a most useful feature for getting dressed with iv lines. The set was a gift from a classmate after the family learned of my son’s leukemic relapse. His friend delivered it the hospital. She wore a shy smile and gripped the package in her hands as if for dear life. Wrapped in cheerful paper covered with rainbow color hearts and tied with ribbon, I could make out my son’s name, in hand-printed marker, on the card taped to the parcel. The child’s mom cajoled her to approach my son in his hospital bed. Sheepishly, she passed him the gift like it was a hot potato, and took a step back and pressed herself into the shelter of her mom.

It was common for young friends to be shy and uncertain when they came to the hospital for a play date for the first time. Is it okay to go near my friend? Will I make him more sick? Can I catch his cancer? His friends didn’t understand how to behave and the environment was overwhelming, even for adults. Even for us. Early on in my son’s diagnosis, I found that open communication worked best. It put everyone at ease, most importantly my child. I sent out updates on his health to all our friends and to the families of his classmates. I shared photos on social media in a private group. When I talked about my son’s illness and shared specific ways to be helpful, friends and family were energized and at the ready. When children learned that cancer is not contagious, they relaxed around my son. When they were given jobs, like pumping a squirt of Purell into little hands, as they re-entered the classroom after recess, they felt proud to be protecting their friend’s compromised immune system as well as themselves from germs.

The one message I never managed to effectively communicate was that their presence was the real present and only present requested. The card and the package, though thoughtful, were unnecessary. The real gift came from the few hands of UNO they would play. Playing games buoyed his spirits. Naturally, he would get too tired to continue after a point, and occasionally he would grow cranky, it reminded me of his overtired toddler days. But when he playing with his friends, he was lifted out of the hospital setting and back into the normalcy of a child’s life, the life we all so desperately missed. I must admit, though, the flannel pajamas were a particularly thoughtful gift for an enthusiastic Star Wars fan. Embroidered in blue thread, on the left chest, just above the heart, was his name: Ewan.

As the intern listened to Ewan’s lungs that morning, the pajama set, neatly folded, rested at the end of his bed. They remained within reach in case Ewan woke up and wanted to get dressed, maybe play a hand of UNO. I knew this wasn’t likely to happen today, or any day soon, but the presents that my son loved were there, just in case… I hoped for a miracle.

When listening to Ewan’s heaving chest, it was easy to avoid the most obvious and sensitive of spots on his chest: his accessed port. The large, Tegaderm-dressed area was dated and initialed in Sharpie to remind us of when he would need the next poke of a stinger-sharp needle to connect a clean, bacteria-free line for his chemo.

Compared to his bloated and taut tummy, his chest looked sunken and depressed. Overworked veins bulged in blue and there were red, pinprick sized speckles near his armpits. For weeks, he had been bruising to the touch. His skin was a pale canvas, blotted and paintbrush-stroked with a palette-range of purple patches. Like Boy Scout badges, these bruises had yellow halos as they faded. I scanned the eyes of the medical resident. He leaned in close to listen and I watched him for signs — a spark in the eyes, a crease of the brow or twitches in the corner of his mouth. Does he hear a crackle? I wondered. Is there a clue of what is next to come? My eyes tracked his every movement, as the drum of the stethoscope shifted from front of Ewan’s chest, to the back, then made it’s way over and around my baby’s curved, bloated belly.

The room was dim. The doctor’s eyes were bright — a warm amber and gold, peppered with black flecks. In the gloss of his iris, I saw the reflection of my child’s shape. His intense, charcoal pupils revealed the intern’s own exhaustion, even though it was only his first week on the cancer care unit. From previous rotations and training, I understood, by now, he had developed a good poker face. He gave no tells. Was that a slight exhale? I broke the silence with an easy question, “How do his lungs sound?”

“They sound good. All clear,” was all I got back.

Two years of quarterbacking my child’s cancer treatment had taught me to press on, “Could you hear his bowels moving?” We were not strangers to bowel blockages and gut complications. I feared the return of typhlitis or C. diff, or the rise of any other number of gastrointestinal complications. “Everything sounds good,” the resident said. He straighten and took step back, “Do you have any questions for the team?”

Yes, I had questions. How do I keep my child from dying? Can you save him? Can you do whatever it takes, magic, or a miracle — anything, to get us off this merry-go-round? But I didn’t ask because I already knew. These were questions he couldn’t answer. The intern understood what was happening. I knew, too. Even Ewan knew.

My eight-year-old child was aware of the risk that he might die. We honestly and openly talked about it at diagnosis. “You have a serious, life-threaten illness called leukemia. The doctors are confident they can cure it.” At the onset, we were presented with the data that 90% of children are good outcomes and 10% do not survive. Though frightening, these are favorable odds that we shared with him. Our intent was not to scare him, but to be loving and truthful. Doesn’t every patient deserve denying medical honesty, awareness, and some degree of agency? We shared all the information we received. He may have been only six, at the time, but it was his body and we needed his buy-in and trust. When he was educated on the reasons he had to to stay in the hospital, show up for clinic appointments and follow doctor’s orders, was to save his life and get him healthy again, he complied. It is a difficult to get a child to take multiple, daily medications, exercise, eat well, rest, and participate in many activities that are not just unpleasant, but painful. What a child wants most is to play. Ewan was an exceptionally playful child. Lucky for us, he was also faithful, with an earnest and loving spirit. He often showed up for treatments with a smile, though, he expressly hated having leukemia. During one clinic visit, unprompted, he asked his oncologist, “When will I be done having cancer?”

She was taken aback because it was not typical for a child his age to ask so thoughtfully about the future. She replied gently and with the honesty of a pediatrician who understands children, “It will take some time.”

Now that it seemed it would be taking longer than “some time,” Ewan began giving subtle signs that he wanted to talk about death. One afternoon, he woke from a nap in terror and tears. Gasping through his shock and trying to find his already debilitated breath, he described a nightmare. He had dreamed that he was in a ship flying through the Dagobah System. The ship landed on the planet of Dagobah. A monster came out of the ground and swallowed him whole and he died. The dream left him trembling.

A few days later, when I was giving him a bath in the hospital bathtub, he asked, “What is it like to be in a coma?”

Much earlier in his treatment, he had spent time in the intensive care unit because he was at risk of sepsis. There was a young girl in the room next to his. Her hospital bed was oriented out of typical fashion — it faced the window, not the television like most patients’ beds. When I walked by her room, I could not see her face, only her long, dark hair, shiny from natural oils, lovely brushed out smooth and straight. Scotch-taped to her sliding glass door were photos of her smiling and holding a bouquet of flowers. I didn’t know any more, other than she was in a coma. I told Ewan about her, described her room, and shared that a nurse sat by her bed 24/7. It caught me off guard when he asked the question about a coma, but I answered as best as I could, drawing my words up like imaginary guardrails to protect him falling into fear of the unknown. “I don’t know. I imagine it is like being asleep. I think you don’t respond to any stimuli or feel any pain. Hopefully, you know that you are not alone and you are very much cared for and loved.”

I wanted to sugarcoat my response with positivity — to hide my distress. A knee-jerk retort of words resounding with hope filled my head. But I held my tongue in this moment; we were communicating without words. He needed the space to share sad and dark spiraling thoughts. Thoughts as far off and long lost as the Degobah System. He needed unspoken reassurance that it was okay to imagine being in a coma, or worse… My silent intent was to acknowledge the truth that I had nothing more to offer than my presence.

Ewan didn’t say more. In the quiet of our thoughts, I sponged his bald head and smooth, boney, bruised back with baby wash bubbles and warm water.

He no longer had the interest or energy to playfully squirt water at me from the bill of his rubber ducky bath toy. As the water swirled down the drain, I patted him dry and wrapped his shivering body up, snug as a bug, using a heap of pre-warmed towels handed to me by a thoughtful nurse. Then, I swooped him up and tucked him back into his wheelchair. He wasn’t being rebellious when he rebuffed his pajamas. He was being a tired, cold child in a dying body. We strolled back to his room; a mother-son dyad wrapped as one in silent honesty and sad acknowledgment of future outcomes.

The next morning, the medical resident was back. He ran down his same script, repeating rote questions. Our daily dance, our triple-step of mutual pretense, carried on. I wondered what he would say if Ewan asked him what it was like to be in a coma. It is likely the intern had far more experience and insight into this question than I. Would there be an elongated pause? Would he say he would take the question back to the team? Would he share that he had once had a patient who was in a coma and he doesn’t believe that she felt any pain and he was certain she was never alone? It is hard to tell. Ewan didn’t ask him. The three of us carried on pretending that medical rounds would come and go and come around again. That pajamas might get put on. We ignored the fact that the miracle of life also includes the certainty of death.

I sometime wonder if Ewan thought I was the one who needed protection. This child, who when well enough, would fluff and prop up a pillow for me, in preparation for my head to rest next to his, as we bunked down for our nightly story. He paid attention to details. He knew when I was fading off and misreading the story’s lines. He’d nudge me and say, and me “Mom, wake up. You read the wrong words.” So, of course, he heard the crack in my voice and elongated pauses during disheartening and difficult times.

As his numbers got worse day-by-day, friends and family began swirling around us, trying in their own ways to process the realization that Ewan was not going to recover and in fact would soon die. No one wanted to talk about it outright, but avoidance of death was no longer an option when we learned, on day twelve post CAR-T treatment, that the miracle cells could no longer be detected in his blood. Intense conversations with his core medical team carried on, dominated by the question, “what do we do now?”

Rounds carried on, but after the disappointing news, I noticed a shift. New faces appeared. Pain specialists and palliative care physicians. Even a new attending came on service. As for the intern, the one with peppered black flecks in his eyes, the one who’d prudently push away the curtain to peer in and had readied himself with a new Harry Potter joke everyday after he learned Ewan was a fan of both books and jokes, he vanished around the time the Legacy Cart showed up by the sliding glass door and a do not resuscitate order was taped the wall of Ewan’s room. I don’t remember seeing the intern’s warm face, with its traces of fatigue, again, or getting the chance to thank him for doing his best and for learning with us on our ups and downs.

By this time, there was no need for mutual pretense. The writing was on the wall. What remained was an unbreakable emotional interdependence: mother connected to child and child connected to mother, in open, loving, honest communication to the very last.

It wasn’t easy to talk about death, but we did it. On one sunless day near the end of his life, I gazed out the window onto a gossamer glaze of gray haze. It had rained in the night, darkening the asphalt in dampness. It was as if the sky wore a shabby, woolen coat of drab gray, piled and monochromatic patch-worked. The low, lifeless buildings were gray. Cherry blossom trees were in full bloom for as far as the eyes could see. What should have been a hopeful, spring scene, burgeoning with new life on this day, without the sun’s added sparkle, looked sallow instead. Sidewalks dusted with pale petals revealed the anemic-looking trees for what they were: dying. The outside world matched my insides: disintigrating and disconsolate. I had a metallic and cutting taste in my mouth that the saltwater backwash of tears didn’t wash away. A muzzled sound filled the room. It was the constant fizzy hum of the high-flow oxygen machine. I could also hear Ewan’s raspy, short gasps of breath. When I gave words to what was on my mind, the crack in my voice fractured, creating a crevasse that all the tears I ever spill will never fill up. But I had to ask. I needed to know. “Ewan, what signs will you give me to let me know you are here?”

“I am here,” he replied.

I didn’t turn around to face him for fear that he would see my tears, but I knew his eyes were closed. I couldn’t even tell if it was Ewan speaking or his morphine drip. He said some nonsensical things in these last final days, like, “I want a grape milkshake.”

I pressed on. “I mean, how will I feel you? Will you be a gentle breeze on the wind?”

“No.”

This was so difficult to talk about. It came from a pit in my choking throat. I knew he wasn’t trying to make this difficult, but I felt an irritation that we weren’t getting anywhere. I wanted to ask what signs will you give me to let me know you are still with me after you are dead?

I tried a different approach and asked instead, “What is your favorite tree?”

“Maple.”

This answer uncorked hysteria in me. Face in hands, I heaved with grief-tarnish laughter and exclaimed, “What?”

Two winters back, after a snowstorm, a maple tree crashed through our dining room ceiling. It was during Ewan’s first year of treatment, the deepest part, called delayed intensification. True to the treatment’s name, when we weren’t living in the hospital, we had to live out of a hotel room while our home was being restored. It was two months of hell for me, but he loved much of it because the hotel had a swimming pool and breakfast bar complete wiht waffle maker. Of course, Fourth Child, you ever silly, playful, lover of waffles and jokes — maple is your favorite tree.

He died two days later.

It was beyond exhausting trying to keep my eyes fixed on Ewan’s beloved face, trying not to miss a single moment of loving and caring for him, and to let him know he was seen and held close to the very last. Just as it is beyond exhausting to go on every day without him now. My springs will never again know their previous sparkle. But I am grateful for the eight springs that I had with him. Even in times of difficult conversations. And, I have my reminders that Ewan is here, including a bench in one of our favorite parks, with his name on it. It is beneath a maple tree.

Author, researcher, mother living on an island near Seattle. Now, notably, an international bunny smuggler. Find her struggles and snuggles at www.teamewan.com

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