Clydesdale, Nova Scotia, Canada
|Artwork by Susan Napier. Published with permission.|
Why was she taken? While you remain to question me for your school project?
Renee had a project. Her seventh-grade class had been set the task of composing an essay on some aspect of American society. She had settled on tackling the American healthcare system, and after some thought had decided—perhaps her mother had a part in this—to come and interview me.
It had been five years since I had last seen her, having decided at her final clinic visit we did not need any more routine follow-ups. The family lived in town and her father was on the neurosurgery faculty of our medical school. We would pass each other on the stairs every six months or so, or find ourselves in the same line for a cup of coffee, and he would update me on Renee’s exploits. This seemed as good a way of checking on her as bringing her back into my clinic. And I knew full well that her mother would be in touch with me soon enough, should anything at all out of line happen to their remaining daughter.
Renee started to quiz me, shuffling the three pieces of writing paper that she had laid out on her knees. She had prepared her questions well.
“Why did you become a doctor? Why a pediatrician? Why an oncologist?”
She pronounced the words precisely: a serious child, wise beyond her thirteen years. We were sitting in tall rocking chairs that faced each other four feet apart in the back of unit 94B’s nursing station. Her presence there with me on the children’s oncology ward took me back a decade. Did she have any memory, I wondered, of all those days and nights she and her mother had spent here?
She went on tossing out her fearless questions. “Where did you go to school? Do you have children? What do you like to do when you’re not working?”
I caught myself mulling over what her seventh-grade teacher would make of reading my personal story in this term paper on American healthcare. It seemed like it might come to look more like a college admission essay.
Renee was already a couple of inches taller than her mother, who stood silent and still behind her chair. When her mother had called me on the phone to set things up, she had told me with rare candor that in her dreams she would sometimes hear my footsteps down the Cancer Center corridor. She would wait for the pause beside each exam room door, which would signal the verdict on her daughter’s blood count and whether this one too was to be taken from her. It was something about the length of the pause, she told me, that told her if the news was good or bad.
I had first met the family twelve years earlier when the twins were just over twelve months old. Renee was diagnosed with acute leukemia in late February, on my fortieth birthday. A month later to the day, her sister Lise came down with the same thing. Two cases of leukemia in identical twins is not so unusual an event, though there is no such tendency when twins are non-identical. We still know precious little about the causes of this disease in children, but there has to be a clue here. There must either be a faulty gene that does not know to put up a fight when a cancer cell starts to lay its eggs in its happy home. Or some cancer-causing virus gets inside this single embryo at a critical time in the pregnancy and stealthily prepares a nest in which the foreign cells may grow.
But what virus? Which gene? Therein lies the mystery.
The twins responded to their initial chemotherapy the way almost all young girls with leukemia do. Within a month of diagnosis, Lise had followed Renee into a state of remission; there was not a trace of cancer to be seen in either of them. Pediatric oncologists learned decades ago, though, not to equate this situation with cure. The leukemia cells had simply gone underground, and a long war of attrition was just getting underway to root them out for good.
When identical twins are both affected—and it usually happens early in their lives—the leukemia looks and behaves very much the same in the two of them. At least that is the rule of thumb. Trying to offer some comfort to her parents after Lise first became ill, I told them they had every reason for hope: that young girls with leukemia seem to do better than older children. Renee was already showing all the signs of continuing to respond well to our treatments, and there was no reason to think Lise would not follow suit.
So much for rules of thumb; it was not to work out that way. Renee, the first to go down with the disease, never looked back once her treatment got underway. She stayed in almost blooming health throughout her three years of prescribed therapy and, as was abundantly clear as she interviewed me, continued to thrive more than a decade later. But Lise’s state of temporary remission was to last less than six months. Then the leukemia exploded again in full force within her. With more intensive treatment she achieved another shaky hold on things, which kept her going for another eight months. After that, the cancer gathered force and took her life, fifteen months after it had first made its presence known within her.
Ten years on, her mother was still haunted by what I had told her that first day. The day we diagnosed her second daughter, she was emerging from a sleepless night at Renee’s bedside. Renee had just come through her first month of chemo. She was looking down the road at three more years of in-and-out-of-hospital stays, interspersed with weekly clinic visits. I had sought to lift her spirits a little, quoting the medical literature that told us that Lise’s odds were every bit as good, and that, like Renee, she had at least a two-to-one chance of making it.
“Little girls make up the largest group of those who seem to be cured of their leukemia,” I added, “and your two have everything going for them.”
Within a year I was eating my words. Once the course of the girls’ leukemia, and their lives, abruptly diverged, I suspect their mother put no further stock in medical statistics. I could hardly blame her, especially because I could offer her no good reason for the disparity. If she doubted my competence to care for her remaining daughter, she was too courteous, or too reserved in both emotion and judgment, ever to express such thoughts. But it seems her dread of Renee’s monthly blood counts never left her dreams.
Ten years on, her surviving daughter was continuing to ply me with her carefully rehearsed questions. I started to loop a few of my own back to her:
“Do you remember me? The hospital? All those shots?”
“Yes,” was all she said, this solemn young woman, her mother’s daughter in every way. “Yes, I remember you.” What feelings were hidden behind her steadfast gaze I had no way of discerning. Then I ventured the question that was beating away inside my chest. “And your sister Lise? Do you remember her?”
“Yes, I remember her.”
She said nothing more. Her mother stayed mute behind her chair, her eyes down, fixed on a point on the top of her daughter’s head. One question I held back, left forever unasked, and unanswered: Why was it that Lise, your twin, was taken? And why do you, Renee, remain here, a young woman in such glowing health, to question me for your school project?
Recently, a mutual friend of mine and this family offered a postscript to this story. Renee, now seventeen, was at a local beach celebrating the Fourth of July. Several faculty families had made this an annual outing. The teenagers were toweling off after bathing when they heard frantic shouts from some distance out in the ocean. A young boy had been swept out and was in obvious danger of not making it back to shore. Without pausing, Renee tossed her towel aside, plunged back into the sea, and in a few dozen strong strokes was able to reach the boy and haul him to safety.
If you believe in karma, you might think I had the answer to my unasked question. Yet this begs the (equally karmic) question: why then did Lise die? I believe the artist’s image of the final scene in this story suggests a powerful answer. Lise is shown at the core of the image as an ethereal figure extending her right hand, and her heart, to aid the two figures—Renee and the young boy—as they battle the elements in the roaring waters below. To me, this image represents a sacred reconnection between the twins, restored through the young boy’s very mortal peril.
JOHN GRAHAM-POLE, MBBS, MD, MRCP-UK, ABHM, a graduate of University of London, was a clinician, teacher, and pioneer researcher in the field of childhood cancer and palliative care for forty years. He co-directed bone marrow transplant units at Case Western University and University of Florida. He co-founded the University of Florida Center for Arts in Medicine (www.arts.ufl.edu/) and HARP: The People’s Press (www.harppublishing.ca), dedicated to publications on art and health. He is an author of eleven books of fiction, poetry, and non-fiction. His website is www.johngrahampole.com, and he can be found on Facebook and Linked-In.