Courtesy of HumanParts.Medium.com | By Jenny Harrington | Photo: gorodenkoff/Getty Images and Jenny Harrington | Originally Posted 03.09.2019 | Published 01.21.2020
At 3 p.m. on a Monday afternoon, death announced it was coming for him. He was only eight years old; his cancer cells were not responding to treatment anymore. His body’s leukemic blast cell counts were doubling daily. Bone marrow was no longer making red or white blood cells, not even platelets. The marrow was only churning out cancer cells. In a process similar to churning butter, his blood was thickening with homogenous, malicious content: cancer. And like churning butter, it was exhausting work. The battered remnants of his healthy self were beaten down by chemo. And yet, every fiber pressed on.
He was so very tired. You could see it in his eyes. At the same time, you could see his love. His love for life was front and center. His love for sweetness crystalized on his tongue in the taste of sun-soaked strawberries. His love for satisfaction could be heard in the snapping sound of a puzzle piece set in place. His love for the simple, soothing smells of lavender emanating from a medicine ball was cherished, as was the fact that he could still hold a ball in his hands. He loved life down to the core, as only an eight-year-old can, and he was doing everything he could to stay alive.
Death was easy to detect. It was right under our eyes, sending the simplest of signals. No appetite. Breathing strained. Cold hands and feet, meaning compromised blood flow. Ankles swollen. Standing up was becoming nearly impossible. His body was shutting down. But it was his temperature that told us the landslide of disease was accelerating and about to swallow us whole.
At 3 p.m. on a Monday afternoon, his temperature was 107.2 degrees.
Doctors and nurses clustered outside of his hospital room. The cluster grew. The murmurs increased. My concern intensified. We had spent enough time at the hospital to know when a situation was escalating. I was not surprised when I was quietly summoned out of the room. As the sliding door closed behind me, I found myself in the center of the humming cluster. Bustling, shuffling chaos encircled me. The attending oncologist, at the center of the group, was serious and quiet. She said in a low voice, “Your son is dying. He likely won’t live through another two hours. He won’t make it through the night.”
Tackled by shock, I couldn’t breathe. I had quarterbacked nearly two years of his cancer treatment. I knew every player and every play. He had an all-star team from the start. Yes, we’d been on the defensive since his leukemic cancer relapse. I fought furiously to get him on a (supposedly) life-saving immunotherapy trial, in which his own immune cells were reprogrammed to attack and destroy cancer cells. Chimeric antigen receptor T cells (CAR T cells) had been his Hail Mary treatment 12 days ago. Now, we were waiting and watching, at the edge of our seats and hospital bed, for them to work their magic. CAR Ts for the win! Wait. Was I hearing, amidst the chaos in the hallway, that our miracle CAR T therapy had failed? Yes. The ball had been fumbled, we were out of plays, and time was up. I was told, “Your son is dying.”
There was one person who would be more shocked than me.
Choking back tears, I took a deep breath, held onto that gulp of air and went back into the room to sit next to my imminently dying child.
Without a breath, I pushed out the words, “We need to talk.”
What do you say to a dying person?
Afew weeks earlier, on another Monday afternoon, I was lying in bed with my son. It was back before his body hurt too much to be touched. Back when I could still curl up in his hospital bed with him. I whispered, “I love you,” as I often did.
He said, “I know.”
Of course he knew. He knew everything I did was for him. Our beloveds know we love them. We say it. They see it. They know. So, what more can we say? What words can we give them when there is nothing left but words? Especially when words seem like they are failing. And words do fail.
There are no words for the time your eight-year-old dies in your arms. Even if there were (and, I promise you, there aren’t), most people will not need them because most people will never be in that situation, unimaginable as it is.
But most of us will face other painful moments sitting next to a dying person. How do I know this? Because our mortality rate is 100 percent. One day, we will all be a dying person. And before that, we may be close to several, or to many. We all need to know how to sit and talk through a time for which there are no words. A time when not even an “I love you” will suffice. How do we catch our future selves? How do we comfort our dying loved ones now?
I slowly let out my held-in breath and said, “I am so sorry to tell you this, but you are going to die.”
“Wait — what? I don’t want to die!”
He was stunned, furious. His big, crystalline-blue eyes widened. Maybe it was his soft, bald head and the lashless lids framing those eyes, but his blue eyes were all I could see. Added to the mix of love and fatigue, I now saw fear. My mind went on a frantic race to find the right words to cradle and calm him.
There are no magic words that can catch and carry and keep a person crossing into the end zone. Words cannot keep a loved one from dying.
“I am so sorry. I know. But we are all going to die whether we want to or not. I am going to die. Dad is going to die. We are all going to die and we don’t have any control over it. I am so, so sorry.”
“When am I going to die?” he asked. He was, as always, curious and thinking things through.
“I don’t know, but soon.”
Anger and disbelief bubbled back up. Does it come as any surprise that he was more shocked than I to hear the news he would be dying soon? He was a child; he believed us with magical wonder when we told him he would get better. Just like he believed us when we promised the Tooth Fairy would exchange his lost tooth for a gift if he tucked it under his pillow. We had assured him he would get better. He had done everything asked of him — every difficult, painful, nauseating thing. And now, my sweet, darling, silly monkey and I were staring wide-eyed at each other, with 100 percent mortality in between.
Delivering this message was the hardest thing I’ve ever had to do. But I had to stay calm and say more. I had to find impossible words — words that would bridge the gap between life and death and make his predicament palatable. Three phrases welled up that became a touchstone for us in the days that followed. I call them “three magic phrases to comfort a dying person” now. At the time, they were a lifeline of connection for the two of us and for the rest of our family.
Here is what I said to my distressed, dying child, as lovingly and reassuringly as possible: “You will not be alone. You will not feel pain. We will be okay.” He needed each of these phrases more than “I love you.”
1. “You will not be alone.”
Letting him know you will not be alone was important because he was human — a social, silly, lovable animal. As the youngest of our four children, he was accustomed to chatter and chaos. From birth, he was playful and craved connection. That’s why he would crawl in bed with me in the middle of the night or ask me to play a game of Sorry or wait patiently for me to read him a story. He especially craved company when he was scared, like on the first day of preschool.
The first day was only an hour long. The children traced their names on nametags, listened to a story on the rug, and did a craft project. He stayed tucked between my legs, clinging to them when not focused on an activity. Preschool was going to be a blast and he’d make the best of friends, but he didn’t know this yet. All he knew was that everything was new and it scared him.
Fast-forward to this Monday afternoon when he had just been informed he was going to die. He was heading into the biggest and most unknown of all experiences. He needed to hear he would not be alone.
2. “You will not feel pain.”
My child had endured a tremendous amount of pain over the past two years. The pain of pressure building up from inside his bones, blooming cancer cells ready to burst out, was one of the first signs. One day, it was suddenly too painful for him to walk. Then there was the pain of treatment, with its constant needle pokes for blood draws, bone marrow biopsies, and spinal taps. Headaches, nausea, and general malaise — having cancer was a literal pain. Not to mention the social and emotional suffering. You will not feel pain was important because he needed to hear that although we could no longer contain the cancer, we could soothe his nerves.
3. “We will be okay.”
Saying we will be okay was the most important, and the hardest, of the Three Magic Phrases. I simply didn’t believe it. I had a clasping, nearly crushing hold on hope up until the very moment I heard, “Your son is dying.” I thought he would pull through and somehow live the long, glorious, trouble-free life that he deserved. How could I ever hold hope close again? Saying we will be okay was saying the impossible. We are not okay without him. But I had to say it, for him.
He cared deeply about others. If I asked, “What movie do you want to watch?” He would often answer, “Whatever movie you want to watch.” In third grade, he had an assignment to choose a cause to support. He chose cancer and he said this cause was meaningful to him because “I want everybody to stay healthy and because I have it [cancer] and I want everyone and myself to get better.” Even in the face of his own mortality, with a life-threatening illness, he was thinking of others. He would not be okay unless he knew we were okay. He loved us beyond measure. We did our best to love him back the same amount.
He did not die in the two hours that followed. We called in our closest circle and Skyped with family and friends far away. A beloved babysitter brought in a guitar. The curved, wooden instrument was unclasped from its case. Strummed music floated through the room like butterflies. We sang. Best pals dealt Uno cards. We poured butterbeer, the type Harry Potter would order on a trip to Hogsmeade, into waxed paper cups, passed them out and toasted, “To Ewan!” The hospital even allowed his puppy to come in for a little tail-wagging and a few wet kisses.
Friends left and night descended. Dad and I tucked in next to him, dimmed the lights and read from Harry Potter and The Half-Blood Prince. I didn’t sleep. Miraculously, he didn’t die that night.
What followed was a memorable week of playdates and parties. Out-of-town family and friends flew in. We enjoyed an enormous circus-themed party on the hospital’s garden rooftop. There were acrobats, a magician, and a band made of talented elementary school music teachers. His friends wore Hogwarts robes and superhero costumes. Everyone ate chocolate cake, sang, danced, and celebrated his life like there was no tomorrow.
All week long, I repeated, “You will not be alone. You will not feel pain. We will be okay.”
There are no magic words that can catch and carry and keep a person crossing into the end zone. Words cannot keep a loved one from dying. The morphine drip increases in strength and frequency. Exactly one week later, holding my hand, he died. I died that day, too. There are no words that fill in for his silenced silly and cherished company. I feel incredibly alone. It is unimaginably painful. That’s when I repeat the Three Magic Phrases in reverse order. We will be okay. You will not feel pain. You will not be alone. I feel myself caught in the arms of my beloved child. Now, I am not alone. Then, the pain eases. I will be okay. This is the beauty of the Three Magic Phrases: dying people live on as long as we go on remembering them, and repeating the phrases we said to them is a very direct connection. Our loved ones catch us, daily, and keep us going. And in turn, when it’s our time, I hold onto hope that we too will find comfort in a few magic phrases.
Author, researcher, mother living on an island near Seattle. Now, notably, an international bunny smuggler. Find her struggles and snuggles at www.teamewan.com