Green and Dying

I met Wally for the first time when he was in the ICU. He was 14 years old and fighting a losing battle against rhabdomyosarcoma. Wally greeted me with a look of silent despair. His right arm had been amputated just above his elbow and he was on a ventilator. This was my first experience with a dying child and, seeing Wally in his shocking state, I felt totally overwhelmed.

Oh as I was young and easy in the mercy of his means
Time held me green and dying
Though I sang in my chains like the sea.
-Dylan Thomas, Fern Hill*

I met Wally for the first time when he was in the ICU. He was 14 years old and fighting a losing battle against rhabdomyosarcoma. I was a trainee in child psychiatry on my consultation-liaison rotation. Wally greeted me with a look of silent despair. His right arm had been amputated just above his elbow and he was on a ventilator. He pointed with his left index finger to his head, tugged out a tuft of hair, and let it fall among the other matted clumps on his pillow. Then he rubbed his tear-filled eyes. This was my first experience with a dying child and, seeing Wally in his shocking state, I felt totally overwhelmed.

I had brought along my standard grab bag of child psychiatry "equipment"-colored pencils, paper, playing cards, checkerboard. But when I saw Wally's devastated state, I knew that these tools were of little value. In fact, nothing in my training had prepared me to deal with a child in Wally's condition. After an awkward silence, I realized that Wally was trying to communicate his experience to me through finger motions and expressive eyes. It struck me that in this first meeting with Wally, all I had to do was to assure him that I would do my best to understand what he was trying to tell me.

So I started to talk to Wally about what he had been through-mutilating surgery, intubation, hair loss, loneliness. I tried to reassure him that some things would get better, pointing out that his hair would grow back after his chemotherapy ended. I acknowledged his sadness and anger and promised to help him cope with his strong feelings. Wally stared at me intently, nodded, and then turned his head away. Our first meeting was over.

There was something about Wally that I liked right away. I was sincerely moved by his willingness to try to communicate with me even though he could not speak and was in considerable discomfort.

The next time I saw Wally, he was in the hospital's regular adolescent floor, propped on several fluffy pillows laid at the head of his bed. With his handsome face and gentle wit, he had quickly become the favorite of all the nurses. He said that he was glad to see me, but felt "mad and sad" as well. I suggested that we speak about his sorrow and anger, but Wally had another idea. "Let's play strip poker," he demanded. I agreed instead to penny ante poker. As we got to know each other better, I offered explanations about his wish to play strip poker: I felt that Wally needed reassurance about what he had lost when his arm had been cut away. Was his penis likewise in jeopardy? Was he still going to be able to be a man? Would he be able to feel an attraction to girls? Would they be attracted to him? Could his altered body do all that he wanted it to do: hug a girl, throw a ball, write a love letter?

Wally was infatuated with his female oncologist, Dr Ralbot. She would see him on rounds early each morning. "I can smell her even before I open my eyes," he confided to me. I privately wondered if senses other than sight become important to children like Wally, who are fighting for their lives. Could there be a regression to an infantile time when, say, smelling mother's milk promotes survival?

Well into my year of work with Wally, I was beeped to the wards. Wally was experiencing phantom limb pain and neither his parents' massages nor pain medications were having any impact. Having just learned how to hypnotize pediatric patients, I offered to hypnotize Wally. Writhing on his bed, he nodded his assent. Since I knew him well, I offered imagery I hoped would capture his attention.

I asked him to imagine that he was climbing into the basket of a hot air balloon. The balloon was carrying him high into the atmosphere where the sun's warmth soothed his right arm. With each sway of the basket, I told him, the pain would lessen, his arm would just feel warm, and he'd see his parents smiling up at him from the sidewalk. As I spoke, Wally's sobs quieted and he soon fell asleep. Later that day, he claimed that he had faked being asleep. He told me I was a lousy hypnotist and that he did not like to fall asleep to a story. "I'm grown up," he insisted. "I don't need lullabies." It hadn't occurred to me that the cadence and narrative of the hypnosis had mimicked a lullaby. In any event, it had worked.

Following another round of chemotherapy, Wally asked me to accompany him to the wig shop. He wanted a wig with short hair that was cut feathered back. He asked my opinion about how the wig looked. "I want your girl opinion, not your shrink opinion," he added. I asked him whether he was worried about looking "boy" enough? The theme of amputation and castration had come up repeatedly in the material Wally brought to his therapy, and I addressed it directly.

After about 8 months, Wally's cancer started to grow like a brush fire. His chemotherapy regimen was altered in the hope of obtaining another remission, but he became weak and unable to hold down food. The new therapies failed to halt the tumor growth. Dr Ralbot told me that Wally would not survive. I was devastated. Wally grew depressed, but never asked if he was dying. His parents did not want him to know. At the time, I did not have the wisdom to know whether he should be told, although I could hardly bear the certainty of his death. I will always regret the decision we made to keep secret what Wally instinctively knew.

Wally asked me to take a series of photographs of him showing his surgically altered, malformed arm. He called the images his "elephant man series." The 10 photographs, which were taken over the course of weeks, showed a clear decline. Wally appeared to be shrinking and new lumps appeared in what remained of his right arm. He kept the photos by his bedside and studied them intently.I was not there the day Wally died. The nurses told me that he had slipped into a coma and, after several hours of labored breathing, had died in his parents' arms.

Wally's therapy illustrates some of the common themes that might present when a young person is dying:

  • Patients regress. They may hand over ego functions to their caregivers. Ego support becomes essential. As Wally lost his capacity to function, he turned to his parents, to me, and to his nurses to take over certain functions, such as self-care.
  • Countertransference issues arise. Wally's decline was difficult for me, as was the whole treatment. I found that I needed more than one supervisor for support and guidance. I needed to learn how to talk to a child in a therapeutic way when the child was dying. I needed help to recognize changes in the child's developmental level as death approached. Ultimately, I needed someone to listen to my pain at losing my patient to cancer.
  • Transition objects may emerge. I believe that Wally studied the photos I took as a way to hold onto both the essence of self and our relationship when I was not there. And in playing solitaire, Wally also connected to the times that we played cards together.
  • Patients' physical comfort and dignity must be maintained. I believe strongly in using hypnosis and meditation to help mitigate pain, nausea, and anxiety in patients with cancer.
  • Dying children should be seen frequently by their therapists. The enormous number of consultation requests at the institution where I trained led to a restrictive policy: children with cancer were given one therapist visit. The consultation could be extended if the child or family were unwilling to follow oncology recommendations, if the child exhibited behaviors that disrupted the unit, or if the child carried a psychiatric diagnosis that required ongoing attention and care. The rules were different for trainees. I could see Wally 2 to 3 times a week as long as he and I felt our time together was of help to him. I learned from that experience that this is the only way to proceed.
  • Always find out about the family. Wally's father was a truck driver who was tempestuous and had difficulty with his anger when under duress. With the strain of his son's illness and prognosis, he often became enraged at the nurses. On several occasions, I arrived on the floor as he was being escorted to the emergency department so that he could be assessed and comforted by the on-call psychiatrist. Things calmed down when Wally's father was assigned his own therapist. Wally's mother worked as a stay-at-home mom. Her biggest struggle prior to her son's illness was with binge eating that had led to morbid obesity. She and I spoke frequently; however, she did not want her own therapist.
  • No matter how dire the situation, get the child's developmental history. Wally was an only child. Until the time of his cancer diagnosis, his emotional and physical development had been within the normal range. He did well in school and in his family, and he had long-term friends. I found Wally to be bright, witty, and caring. He also knew how to calm himself when upset. Developmental information is crucial in determining which psychotherapeutic techniques to implement.

I still think of Wally from time to time and of the tragedy of premature deaths like his. He would have been 44 years old this year. Perhaps he would have been married with kids. I'm certain he would have used his intelligence and wit to enrich the world. But the only reality is Wally's absence. We all lose when a child dies.

*(From The Poems of Dylan Thomas, published by New Directions. Copyright © 1952, 1953 Dylan Thomas.)

Dr Helper is a psychiatrist in private practice in Newton, Mass. She has written about managed care, the diagnostic assessment of children, the therapeutic space, and the developmental aspects of tree houses. All names used in this column are fictional.