The below article gives us all pause to count our blessings and celebrate every little joy.
Eva’s Legacy
JAMA Pediatr. Published online December 28, 2020. doi:10.1001/jamapediatrics.2020.5269
A few minutes after 11 am, the text message I had dreaded came.
“Eva is gone. It just happened. It was peaceful.”
I was in a busy nursing station, steps away from where I had last seen her. “She rested. I’m here if you need me,” I replied. I clenched my teeth, hurriedly completed my note, and raced back to my office before losing composure. I had anticipated this message for weeks but also wished that it would never come. I hoped and prayed for a miracle, a miracle that we could explain through a target pill or a bizarre remission but that I would recognize as a miracle. I had lived such miracles before. They were as real as they were rare.
It had been 2 months since I last operated on Eva, to liberate her lung from a malignant organized effusion. My aim was to get her to her birthday, 4 weeks away. The operation did not accomplish much. We sent her home with palliative care support, expecting her to pass within a few days. Her family celebrated her birthday a month early, and she did not ask why. However, Eva would go on to celebrate her real birthday, Mother’s Day, and Father’s Day. Then she rested, 33 days after she turned 8 years old.
I first saw Eva in my clinic in the fall of 2018. She was a beautiful, energetic, bubbly girl with a small, inflamed lump on her right shoulder, a ruptured pilomatrixoma, or so I thought. I had seen such lesions more times than I could remember. They are benign, typical, and predictable. I booked her for excision in a few weeks. Her family called, worried that it was growing, and I scheduled the surgery earlier. On the morning of the operation, I realized they were right. It had grown, but I still did not doubt the diagnosis, or I did not want to doubt it. The moment I put the scalpel to the skin, everything changed. I experienced that sinking feeling familiar to every pediatric surgeon who comes across something sinister in a child, who has to walk to the waiting room and give parents news that will in an instant shock them and turn their lives upside down.
Eva’s war against her cancer began. She would win one battle after another—aggressive surgical resection, chemotherapy, radiation, and then surgery again. At every visit, she reminded me that hope is not statistical.
And then, like a wild beast upset to be awakened, the cancer began to show its fangs. We would cut one head of the hydra only to have more emerge. We were winning battles but losing the war. And as we retreated before the tumor, her parents started to demonstrate that generosity of spirit, that acceptance that I have never been able to completely comprehend after 20 years of practicing pediatric surgery.
One late night as I was checking in on Eva at the end of a very long day, her mother revealed a source of comfort.
“She had a happy childhood. She will never know what it is like to be sad, hurt, or betrayed,” she told me, holding back tears.
It was such a simple and genuine statement but one that had evaded me. I thought of the brother I lost when I was 3 years old. I found sudden comfort in the revelation that he never knew what it was like to be sad, hurt, or betrayed.
The cancer continued to attack. When there was no room left in Eva’s chest, it pushed through into her abdomen. Her chest wall and flank bulged and the skin over them thinned out. I dreaded the possibility that it would erode through her body wall, forcing her to live the end of her life in pain and misery. I, who vehemently opposes medical aid in dying, began to doubt my own values.
However, Eva seemed ambivalent to the tumor that was consuming her. The glimmer in her eyes had been extinguished, but she remained comfortable. Her parents wisely chose just the right type and extent of intervention that would keep her comfortable until her final moments. I began to realize that the miracle I was recruiting my entire family to pray for every night had actually occurred.
I returned to my office, turned off the lights, and buried my face in my palms. I had taken some comfort that this was an extremely rare presentation that I will never see again. I was wrong. Moments later, I picked up the telephone to tell another family that the small inflammatory mass I had recently excised in their son turned out to be a sarcoma. I then sat in the still darkness, entirely numb. My pager roused me from my stupor, reminding me that the day had to go on. Twelve hours after I had entered the hospital, I left and drove to the countryside to see my wife and daughters. After all had fallen asleep, I sat staring at the woods and lake enveloped in the infinite darkness.
I turned on my computer to fulfill my silent promise to Eva, that I would not let her last day on earth end before recording her legacy, a legacy of resilience, strength, love, hope, and peace.
Article Information
Corresponding Author: Sherif Emil, MD, CM, Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children’s Hospital, McGill University Health Centre, 1001 Decarie Blvd, Room B04.2028, Montreal, QC H4A 3J1, Canada
Published Online: December 28, 2020.