ARE YOU HAPPY? | Holly Cantley
When I asked her to put the BiPAP mask back on, she forcefully shook her head no. I asked again, and she shook her head again. I glanced at her nurse and we exchanged knowing looks.
My daughter’s insistent refusal of oxygen gave us certainty she was cognizant and clear-headed. This girl, now a young woman, who had always exercised a strong voice in her own care, was determined to end her life on the same terms in which she lived it—engaged and intentional.
I wasn’t prepared for my daughter to make an end-of-life decision that early August morning. After I recovered from the fluster of trying to reach her dad and sisters who had left hours earlier to rest for the night, I settled into what came naturally. I held her hand and repeated “I love you” in a steady cadence. My spouse claimed her other hand and asked, “Freckles, can you hear us?” My daughter squeezed hard.
The nurse kindly turned the monitor away and turned off the alarm, allowing for focus and calm. My daughter took deep, steady breaths, each one feeling like a purposeful step toward something beckoning.
Thirty minutes later, the nurse turned off the monitor. I asked, “Is she gone?” She confirmed.
What followed was a long period of serene, euphoric stillness. The experience of this joyful feeling was inconsistent with what had just occurred, which is why I rarely discuss it, because no one would understand. I don’t understand either, but I’ve come to categorize my experience as the mystery of when life leaves the concrete world into something unseen and unknown.
The arrival of her dad and sisters pushed practical issues into focus, reinforcing the truth that the mundane is present even in the most extraordinary of moments. A week’s worth of accumulated possessions during inpatient living needed to be packed, including the sparkly cat cutouts that were on the wall from her lively 18th birthday party three days earlier. The nurse helped us impress my daughter’s handprints onto card stock in various colored inks and we were distracted by the task of choosing each color. My oldest daughter asked the nurse, “Did you ever see pictures of my sister in her real life?” She pulled up photos of her sister in concert attire in black fishnets and Dr. Martens, while we told funny stories and laughed as we shed tears.
As belongings were loaded into our cars, I stood outside her room, guarding my deceased daughter. I didn’t do this consciously, but I think I instinctively knew that early morning employees would soon start making the rounds, whether it be to empty trash or to scan and restock equipment. A lab-draw technician approached and I’m glad I was there to intercept her. I couldn’t bring myself to say, “My daughter died,” but my demeanor and the grey butterfly on the door, which signals to staff that a patient is actively dying, spoke for me.
Then it was time to go. Leaving her behind was excruciating even though I knew she wasn’t there anymore.
She was diagnosed with neuroblastoma, a rare pediatric cancer, at eight years old. She spent more than half her life as a cancer patient, relapsing three times at the ages of nine, fourteen, and sixteen. After undergoing treatment for her second relapse, she went into remission. But we knew that unless a miracle treatment changed the historical reality of relapsed neuroblastoma, it was temporary.
Nevertheless, she made the most of it. She returned to high school, landed a job as a veterinary assistant which delighted her feline-loving heart, and she went out regularly with friends. Our family lived in a suspended reality during this carefree period, even though the cancer’s inevitable return lurked in the recesses. My daughter lived in the moment—happy—and we followed her lead. It was a good year.
The summer of her death, I lived in a state of imminence, knowing that her precarious condition could worsen at any moment. I found myself playing a strange game of Would You Rather? mentally bargaining with an unseen force for the most peaceful, merciful resolution. Simultaneously, I clung to every day. I studied her face, I held our embraces longer, and I closed my eyes when she spoke, memorizing her voice so I would never forget her presence.
An infection in her lungs led to her last admission. After 4 days in the ICU, the critical care team transferred her to the oncology floor, her “home” at the hospital, so she could be surrounded by the physicians and nurses she loved.
Even on BiPAP, my daughter made the most of her final days. She celebrated her 18th birthday with cherished friends and family. We had a group sing-along with her grade school music teacher. Hospital staff who had been involved in her care for almost a decade came to wish her a happy birthday. The birthday greetings doubled as goodbyes, without the occasion being about goodbye.
My daughter’s voice was a whisper, but that didn’t stop her from initiating frank talks and making sure she left nothing worth saying unsaid. Now 18, she consented to a DNR, knowing this also meant that she was free to refuse the oxygen keeping her alive.
Shortly after consenting, Kelli turned her attention to us—her immediate family—gathered around her bed. One by one she asked us if we were happy. The question wasn’t about our state of being; it was exhortation. She was urging us to find our paths to happiness. As she led this interaction, she couldn’t have been more at ease. It made sense; the hard things were now over for her.
The maturity and engagement she displayed in her last days did not surprise me. Neuroblastoma patients are known for being precocious. Research studying this phenomenon, published in Child Neuropsychology, Volume 2, Issue 2 (1996) reported that neuroblastoma patients had a significantly higher IQ than a gender-matched cancer comparison group, even after controlling for socio-economic status, age, and schooling.
At nine years old she was medically savvy, and my role was more as mediator and messenger for this wise-beyond-her-years patient. She knew how long to run an opioid and anti-emetic infusion for the best results. She changed her own monitor leads. And she could smell bullshit from physicians, which often proved entertaining for me as a parent bystander.
One night in the ED while waiting on IV Dilaudid, she deadpanned to her nurse, “Look, I don’t have time for you to access me. Can you do this drug addict style and shoot it into a vein?” She wasn’t serious, and the extreme pain she was in wasn’t funny, but she made things interesting when she could.
Shortly after her death, my daughter’s bone marrow transplant nurse called to give her condolences. “I’m not just saying this, but I talk about her all the time,” she told me. She went on to say that she often mentions her anecdotally as a lesson to nurses about a child’s autonomy, their need to understand, and that compliance can’t be expected simply because something was ordered.
I’ve had other physicians and nurses tell me similar things. One of the last things her oncologist told her as they said goodbye was, “I learned a lot about treating children through you.”
That was six months ago.
I replay the last week of her life frequently, but the moment I think of most is when she asked, “Are you happy?”
Longing and happy are hard to reconcile, but from her life I can take inspiration. My daughter found a way to experience happiness knowing she would die young. She found a way to be happy despite what her illness stole over many years. When I consider this, then surely, I can find a way to be happy too. One day it will come, but for now, okay will have to do.
Holly Cantley became a patient advocate through the experience of her daughter being a cancer patient for almost a decade. Her seventeen-year career in medical professional liability claims allowed her to find a unique way to use her interest in science and medicine and to deeply consider the variables that impact patient care and the work of physicians and medical staff. The intersection of professional and personal has caused Cantley to view the interests of patient and provider as inextricably linked, believing that good medicine benefits all, whichever side of the bed rail you find yourself on. Cantley, who has a degree in Biological Science and Biotechnology, is married with three daughters, one who will forever be 18.