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Caring Moments:

Diaries of a Pediatric Psychologist

Gerald P. Koocher, PhD, ABPP

As a pediatric psychologist trained in the mold of a scientist practitioner, my career has

focused on children and families confronting life threatening illness. I often find myself asked

to make presentations on theoretical conceptualizations, research findings, and general clinical

strategies. Few people ask about the actual day to day work as a clinician working with such

patients, and those who do ask seldom expect a response involving much emotional depth. Over

the years I have felt the need to keep a personal journal as a way to organize and manage my

own reactions to the work. The excerpts that follow comprise representative entries over a six

month span, and offer a flavor of the work that one seldom has the opportunity to share with

others.

October 25th , 7:45 a.m.

I step onto the pavilion elevator in the basement headed to oncology rounds on the eighth

floor. The doors open on the fifth floor, just outside the medical intensive care unit. A young

couple steps into the car. They look to be in their thirties, headed out of the hospital, and do not

notice that the elevator is headed in the wrong direction. It is obvious that they have been awake

most of the night. He has tried red eyes, she sobs quietly. She is clutching a clear plastic trash

bag containing a small pair of sneakers and other articles of clothing for a young boy. I know

immediately that their child won’t be needing those any more. The three of us are together in

the elevator, but alone with our thoughts. The ride up to the eighth floor lasts about 15 seconds.

I want to say something supportive or to offer condolences, but I am a stranger to them. It


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would feel too much of an intrusion. The doors open on the eighth floor and I head down the

hall to rounds. My eyes feel full.

November 4th, 6:55 a.m.

I pull into the hospital garage and head to the basement looking for a parking space. The

oncology case review meeting doesn’t start until 8:00, but two of my patients are on the list for

review today and I want to scan my case notes. There is only one other car in the basement, Dr.

Steve’s BMW. I pull into the adjacent space and as I get out of my car, I notice a pile of

medical records stacked on the passenger’s seat of Steve’s vehicle. The top two are stamped

“deceased” in bold red letters. He's carrying his work home, trying to learn from the kids who

don’t get better. I’m not really surprised. He’s that kind of doctor. His patients love him. He

takes the time to talk with an explain things to his patients. His technical reputation as a second

generation physician and pediatric oncologist is stellar, but is dedication is off the charts. Most

of his patients and peers never know the whole story.

When I walk into the dictation room and switch on the light Steve startles. I had not seen

him sitting in a carrel at the end of the darkened room. He has clearly been crying. I ask if I can

help and he tells me about the death of a patient a few hours earlier. She had come into the

clinic the afternoon before with fever and nutropenia, low immune cell count as a side-effect of

chemotherapy. Overnight the fever fulminated out of control, the six year old girl suffered

massive organ failure, and died about 2:00 a.m. “She was not supposed to die!,” Steve says

pounding his fist on the table. “She was cancer-free, her leukemia was in remission. She was

going to be cured. She was not supposed to die!”

He looks at the clock. It’s 8:05 and we are both late for rounds. As we walk into the
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clinic the waiting room has begin to fill with the day's patients and Steve puts on his sunglasses.

He does not want the patients and parents to see his reddened eyes. One of the teenaged patients

observes, “Hey, Dr. Steve, wearing your shades inside the days?”

Steve replies, “Oops, must have left my regular glasses in the car this morning.

January, Life on the List: Alex and Tina

Alex has cystic fibrosis with severe lung disease and has been “listed” to receive a lung

transplant for several months. He is 14, but much smaller than most boys his age, waiflike and

frail. He no longer attends school, he tires and becomes short of breath easily, and the winter

colds and flu prevalent in places where children gather could be fatal to him. Alex doesn't sleep

well despite a constant flow of oxygen through a nasal canula. He reports waking often during

the night with occasional visions of himself lying in a coffin. He tells me that he can feel his life

slipping away and cannot put this thought out of his mind even briefly. He says that talking

about it helps a little, but efforts at distraction, relaxation, and other behavioral strategies are of

little help. I call him regularly each night between 10 and 11 p.m., since that’s when he is most

anxious. His mother works the night shift at a local factory. I can listen and encourage him, but

that’s not of much help. Organs his size and blood type are too few and far between. That is

what he’s afraid of and what those who take care of him fear, but we try to offer hope and

emotional support. That’s all we have to give right now.

Tina is an 11 year old, sixth grade student from Rhode Island. Like Alex, she too has

cystic fibrosis. She too is on the transplant list. However, her condition is described as only

“moderately severe,” rather than "critical." I find myself wondering whether those terms

constitute a meaningful distinction. This morning the transplant pager that her mother has been
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carrying for months went off. Mom verified the alert, called Tina’s dad at his office, grabbed

the small suitcase that has sat by the door for months, and headed over to pick Tina up at school.

The hour-long drive to Boston seemed way too fast for Tina.

As specified in the pulmonary transplant protocol, Tina can have nothing more to eat or

drink. She does not stop at the admitting office, but goes directly to the intensive care unit. The

“harvesting team,” another wonderful medical euphemism, is en route by private jet from Boston

to Milwaukee where the donor lungs are waiting. The parents of a pre-teen child who is brain

dead following an automobile accident are trying to make something positive come from the loss

of their son by donating his organs. Tina and her family sit in the ICU and wait. Lungs are the

most unforgiving of transplantable organs and time is especially precious. If word comes that

the lungs are suitable, Tina will be prepped for surgery and removal of diseased tissue will begin

as soon as the lungs are on the ground in Boston. As we wait together, Tina tells me that she

thinks maybe it is “too soon” for her to get new lungs. She knows she needs them, but there is

tension and worry enough for all.

A phone call comes in from Milwaukee. The surgeon sent to retrieve the lungs

performed a bronchoscopy and, “didn’t like what he saw inside the donor lungs.” The organ

donation was declined by the medical team. Tina’s parents heave a sigh of relief with a tear in

their eyes. Tina softly cheers, “Yea,” and they head home until the pager goes off again.

Alex got his new lung on Martin Luther King Day. I found a certain irony to that. Alex

is African American, yet the origins of the recessive gene that caused his cystic fibrosis is

thought to be of Northern European origin and was almost certainly contracted from white

ancestors, possibly salve owners, generations ago. Somehow his chance at survival came on this

uniquely symbolic day. My optimism was not rewarded. Because of the severity of his disease
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and rarity of his blood type the surgeons tried to use a portion of a lung from a much larger

suitable adult donor. The graft failed and Alex died two weeks later without ever regaining

consciousness.

February 14th , Saturday, 10:00 a.m.

Today is my second family session with Sid, Peggy, and Mandy, their 14 year old

daughter. Eight weeks ago their son and brother, eleven year old Zack, was killed by a drunken

driver on the street in front of their home. The family members have become isolated in their

grief over the past few weeks. As though by some unspoken agreement, no one talks about Zack

at home. When our bereavement program reached out to them, Peggy convinced Sid and Mandy

to participate.

This week the family members had a homework assignment. Each was to bring a

reminder of Zack, but not discuss their object of remembrance with each other in advance. I

have often found this a useful way to bring the reality of the loss into the therapy room, while

allowing each family member a degree of control. Peggy has a photo album, Sid a catcher’s

mitt, and Mandy a purple backpack with her name stitched into the back flap with silver threads.

I ask who wants to go first, and Peggy opens the photo album. We look at Zack’s baby pictures,

and trace his path through birthday parties, first days of school, and Little League games. Sid

rubs the black leather glove, and recounts the high points of last year’s games, his voice

breaking and trailing off. I turn to Mandy and ask what she brought. She unzips the backpack

and pulls out shoebox emblazoned with a popular athletic shoe logo. Almost in unison, Sid and

Peggy blurt out, “You brought Zack!”

Inside the box rests an industrial strength, clear plastic, zip-lock bag full of brownish-
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gray ash and small bone fragments. Sid and Peggy had decided to have Zack cremated, but

could not bring themselves to discuss disposing of the remains. The easy solution for Sid was to

put the ashes in the box and stash it on a back shelf in the large walk-in closet off Mandy’s

bedroom. No one discussed this with Mandy, and both parents assumed she remained unaware

about the “temporary storage” site. It should come as no surprise that teenaged girls usually

know the contents of their closets quite. Mandy told us that, when she missed Zack, she would

sometimes sit inside the closet, close the door, and feel close to him. Everyone’s eyes are moist.

I suggest that perhaps the family I ready now to talk together about what to do with

Zack’s remains. For the first time in weeks they feel like a family again, as they try to take each

other’s sense of loss and emotional needs into consideration. They decide to pick out a more

appropriate receptacle together, and to think about a permanent resting place. As we finish the

session, Mindy jokes, “I guess Zack’s out of the closet now.” Sid and Peggy laugh for the first

time in weeks.

March 1st , Monday, 11:00 a.m.

The weather today is dismal; chilly and rainy. It's not a great day for a wedding in

romantic terms, but perhaps it matches the theme for an intensive care unit wedding. Jason and

Rita don’t care about the weather. It’s been a bit more than a year since Jason’s lung transplant

at age 19. Unbeknownst to the surgeons, the donor lung had CMV (cytomegalovirus) and Jason

experienced chronic rejection of the donor lungs followed by "OB," pathologist shorthand for

bronchiolitis obliterans. OB involves a chronic scarring process affecting the small airways of

the lung resulting in progressive obliteration of the airways and obstructive lung disease. His

condition started deteriorating badly over the weekend. Knowing that his death was near, he and
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Rita, his high school sweetheart, decided to marry immediately.

Weddings are not common events in intensive care units, let alone the ICU of a

Children’s hospital. The small dimly lit room was packed with half a dozen temporarily

silenced electronic monitors, relatives of the bride and groom and the medical staff, including

the head of the transplant service, the surgeon, and the psychologist who had known Jason since

age seven. A young priest from Mission Church five blocks away had been called in to officiate.

He spoke in a patient, soft, and peaceful voice. When the time came to say, “I do,” Jason had to

muster several deep breaths of oxygen to get the words out.

April, 23rd 11:00 a.m.

I am on the way to the parent’s lounge area where the family on one of my patients is

awaiting word that his surgery has ended, It is a very hot day and the air conditioning in the

corridor is not up to par. I see a tall heavy set woman dressed in black pants and a long-sleeved

black jersey pacing slowly; actually trudging back and forth, in the hallway near the room where

the circulating nurse gives parents updates on their children’s surgery. A well-worn plush toy

puppy is hung limply over her shoulder. She holds a silver I.D. bracelet in her hand, fingering it

carefully like a set of rosary beads. She is quite oblivious to the people around her; deep in

thought, her mind most likely focused oh happenings upstairs in the operating suite. I think of

stopping to offer some supportive words, but I do not know her or her story, it would seem

intrusive, and another family is waiting for me.

Coping

Psychotherapists some times have work-related nightmares. I remember two in


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particular. The first one begins on line to a surrealistic theme park roller-coaster thrill ride. As

the line winds slowly toward the start of the ride I notice that I'm standing among friends,

relatives, and dozens of bald-headed or bewigged children, several of whom I recognize as

patients I had treated before they died from cancer. Suddenly we are on the loading platform,

and I notice a sign with large red letters: "WARNING! Up to 40% of riders fall to their deaths.

Check your safety bar." I find myself seated in last seat of the back car. I pull the safety bar

toward me and hear a reassuring "click," as it snaps into place. As I look up the car begins to

roll down the chute, and I notice that many of the riders in front of me have not secured their

safety bars. I feel a desperate urge to reach out and help, but I am locked in my seat and cannot.

We plunge into darkness that is broken every few seconds by the flash of a strobe light. With

each flash I see more empty seats in front of me. There is nothing I can do.

The second dream takes place in Joey's hospital room. He's five years old, alone,

desperately ill, and very sad. He does not talk about his illness and can hardly pronounce

"aplastic anemia" anyway. Still, he knows that he's been getting sicker for the past few months,

and has had to live in sterile isolation for several weeks because of a weakened immune system.

Everyone who visits him must be gowned, gloved, and masked. No human skin has touched his

since he entered the sterile environment. He looks me in the eye and asks, "Where are you." I

wake from the dream in a sweat, it's 4:00 a.m. I've been home in bed for four days recovering

from a bout with mononucleosis. I feel an urgent need to call the hospital, and despite the early

hour dial the nursing station. I ask about Joey, and the charge nurse hesitates for a moment, then

says softly, "He died in his sleep two hours ago. We knew you were out sick and were going

call later in the morning to let you know."

One need not review Freud's essays on dream interpretation to recognize what is
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happening. The rational desires to help and to comfort are trumped in sleep by the magical

wishes to meet every need, to cure, and even to stave off death. My cognitively oriented

colleagues have a solution, "positive self-talk." I remind myself that I'm a good-enough

therapist, that no one can (or should try to!) worry about meeting every patient's needs, that my

work helps improve quality of life for critically ill children and their families, and that

psychotherapy can not, after all, cure cancer. Some times it works. Then I think about

Matthew.

Matthew was referred to me for evaluation and then out-patient therapy because of severe

behavior problems, including an attempt to hang himself in a school closet, where an angry

teacher had locked him. When I first met Matthew he was physically healthy, but his life was in

chaos. At eight years old his family was festering through a bitter divorce and he soon found

himself transferred to a therapeutic day-school of emotional troubled kids with learning

problems. I continued to see him twice a week. Then came the persistent back pain and the

diagnosis of an invasive tumor near his spine. Surgery, "got most of it." The medical prognosis

was, "guarded." Radiation and chemotherapy followed, along with more than one fist fight

between relatives in his hospital room. Three years, and many therapy sessions, later Matt was

able to re-enroll in regular school and try to resume a normal life. There were other bumps in

the road; the need for spinal surgery and a steel rod to support weakened bones, continued

family crises, and fears of late-effects from chemotherapy, including cardiac toxicity. Our

weekly treatment sessions tapered off, but each time a new stressor cropped up another session

or two seemed to help. Two years ago Matt graduated from college with honors and a handful

of job offers. He's mentioned more than once that I've helped him get there.

Some times colleagues who know me as a researcher, teacher, or academic administrator


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are surprised to hear that I have regularly treated children and families confronting life-

threatening illness for close to thirty years. That tends to be a real conversation-stopper. I

seldom go into detail about the cases, but the usual reply is, "I don't know how you can do that

kind of work." I remember Alex, Tina, Jason, Joey, Matthew, the kids in line for the roller

coaster, and think to myself, "How can I not."

Related Reading

Bronfman, E. T., Campis, L. B., & Koocher, G. P. (1998). Helping Children to Cope with

Traumatic Injury. Professional Psychology: Research and Practice, 29, 574-581.

Koocher G.P. (1979). Adjustment and coping strategies among the caretakers of cancer patients.

Social Work in Health Care, 5, 145-150.

Koocher, G.P. (1980). Pediatric cancer: Psychosocial problems and the high cost of helping.

Journal of Clinical Child Psychology, 9, 2-5.

Koocher, G.P. (1986). Memorable Patients: A Contrast Effect. The Psychotherapy Patient, 2,

39-44.

Koocher, G.P. (1986). Psychosocial Care of the Child During Acute Cancer Treatment.

Cancer, 58, 468-472.

Koocher, G.P. (1986). Coping with a Death from Cancer. Journal of Consulting and Clinical

Psychology, 54, 623-631.

Meyer, E.C., DeMaso, D. R., & Koocher, G. P. (1996). Mental Health Consultation in the

Pediatric Intensive Care Unit. Professional Psychology: Research and Practice, 27,
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130-136.

Williams. J. & Koocher, G. P. (1998). Addressing loss of control in chronic illness: Theory

and Practice. Psychotherapy, 35, 325-335.

Williams. J. & Koocher, G. P. (1999). Medical Crisis Counseling on a Pediatric Intensive Care

Unit: Case Examples and Clinical Utility. Journal of Clinical Psychology in Medical

Settings, 6, 249-258.