I spent most of my 40 years of medical practice caring for children and adolescents with cancer and other life-limiting illnesses. Once I embraced the Quaker tenet that there is that of God in everyone, it became important that I bring my whole body, mind, and spirit to work each day. This was no easy task in a world where science reigned supreme and our days were consumed with heady considerations of modern medicine’s latest approach to any given disease. The patients themselves seemed too often to disappear from view.
The meditative silence of Quaker worship helped me keep these vital links with my patients, especially when it came to sitting at the bedside of seriously ill, and sometimes dying, patients. There is much evidence that children and adolescents have active spiritual lives and that these are often highly tuned when they are beset with severe illness. Their own spiritual resources can be vital in coping with their afflictions.
I was called one evening to see Ella, a 16-year-old girl in a state of shock who lay in our emergency room with low blood pressure and a temperature of 104ᵒ Fahrenheit. She was clearly unaware of her surroundings. Her mother, sitting close by her bedside, was beseeching me to “do something, for God’s sake do something, doctor,” even while I was struggling to get a handle on the root of her daughter’s illness and trying to get things under control. I knew already why I’d been called: an initial abdominal scan and blood test had shown all the signs that her daughter was suffering from an extensive lymphoma that had already spread to her bone marrow. Ella had a stud in her tummy button and the whole area was swollen and red, probably explaining her shocked state, as it was likely the infection had already spread to her blood.
After going over the situation with her mother, I began the intensive chemotherapy regimen that—along with powerful antibiotics—was essential if we were to save Ella’s life. She was still very woozy when I saw her next morning, though the immediate danger had passed. But she was in the dark as to what had happened to her.
“There’s no easy way to tell you this, Ella, but you need to know everything that’s going on. What’s happened is—you’ve got cancer. A cancer we call lymphoma. We’ve already started giving you treatment for it, to get you back completely healthy again.”
“We call it chemotherapy—strong drugs to kill those cancer cells. Your mom had to consent to the treatment before we could start it.”
“Am I going to die?”
The directness of her question told me there was no hiding anything from this young woman. And in that moment, something passed between us—something I couldn’t define, nor perhaps should.
“No, I don’t believe you’re going to die, Ella. But the treatment will make you feel pretty rotten, maybe as bad as the illness we’re trying to get rid of.”
“How come you didn’t ask me about this treatment?”
“Ella, you were out of it last night, and we needed to get started right away. And you’re what we call a minor, so it’s your parents who have to give us permission.”
The treatment did indeed prove to be worse than the disease in many ways. Chemo and radiation pulled Ella back to fragile life, but the horrid side effects crushed her adolescent beauty. Meanwhile, the cancer succeeded in shrugging off our most potent artillery. A further hideous insult struck: the cancer penetrated her spinal cord, paralyzing her from the waist down. She couldn’t move or feel her legs, nor empty her bladder or bowel.
A resident doctor’s dispassionate chart note marked Ella’s final admission to our hospital:
Caucasian female, 16 years; known non-Hodgkin’s, admitted with recurrence. Prior admits for chemo admin., fever, neutropenia, rule-out sepsis. Physical exam positive for scalp alopecia, healing mouth ulcers, extensive acne face and neck, paralysis and sensory loss from waist down, bladder catheter in place, multiple venipuncture scars, grade II abdominal striae, minimal muscle bulk.
All in all: a physical wreck. Her parents grew increasingly desperate, talked about taking her to Sloan Kettering in New York for a new experimental therapy available there. They were even exploring some much touted but very dubious treatments in Mexico.
“There are definitely newer treatments available to us, with much less of a track record,” I told them. “We can start right away, but have you talked to Ella about all this?”
“She’s barely 16 years old, in no position to make her own decisions,” her mother remonstrated.
“Mrs. Bryant, her paralysis isn’t going to get better. The drugs we’ve given Ella are the best we have, but sometimes our very best just don’t work. I think it’s vital we talk to your daughter. I don’t think she ever got over our starting her treatments without her knowledge.”
“But what if she’s not willing to go along with our plans? Would we have to get a court order or something?”
“Let’s discuss that after I’ve talked to your daughter.”
Ella had caught pneumonia, was struggling to breathe. It was clear she would soon need a respirator to take over her breathing and keep her oxygen levels up. I sat close to her bedside to talk to her, while her parents sat stiffly and apart in the window.
“Ella, it’s getting harder and harder for you to breathe, and we aren’t getting enough air to your lungs. Your mom and dad want us to give you some different chemo, but we’d have to put you on a breathing machine… ”
“It hasn’t worked, has it—your chemo, I mean? I’m not getting better, am I?”
She was holding my look, unflinching. No way I was going to duck the truth. I leaned closer, to be sure this conversation was just between us.
“No, Ella, no, I don’t think you are.”
She moved her hand toward mine, an invitation. I grasped it, felt its feeble clasp.
“Doc, don’t give me more chemo. I’m not scared. I’ll be okay.” It was as if she was reaching out to me, offering me her support. “But can you… stay with me?” Her breath was growing more labored and her words weaker.
“Yes, yes, I can stay with you.”
“And no… no breathing machine.”
I camped by the top of her bed for the next 24 hours, dozing and waking, my right hand always clasping her left. The nurses brought me food trays, as if I was family. Her parents had retreated to our social worker’s room, making only brief visits to see Ella. They were no longer fighting their daughter’s and my decision, but the pain of watching her die was too much for either of them.
Ella had a small blackboard propped against her knees, on which she would scrawl occasional words.
“No drugs.” Meaning she didn’t want to be sedated, didn’t want to hasten the end.
“Not scared.” Ella remained adamant she wanted to be as aware as possible, her spirit somehow sustaining her even as she suffered through the physical anguish of struggling to breathe and the distress of knowing the inevitable outcome. As the silences grew longer and longer, with only the sound of Ella’s deepening, slowing breaths, it felt for all the world like I was in meeting for worship. And as she faded, grew even quieter, she took on a look of ease, acceptance, grace. Very close to the end, I sensed something pass between us. It was as if she was shedding her dying cells into my breath, while I was breathing my own, healthy ones back into her. As if I was carrying something deathless out into our temporal world, while she was transporting shreds of my earthly self to rest with her in eternity.
Perhaps, like they say, we all carry within us the cells of Mohandas Gandhi, or Jeanne d’Arc. Of someone’s, anyway.