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The second time around

Brian T. Maurer, PA-C

The author, a PA in clinical practice for the past 26 years, has spent the majority of his professional time caring for children. He works at Enfield Pediatric Associates, Enfield, Conn. He has indicated no relationships to disclose relating to the content of this article.

Monday morning, 08:45 I arrive at the office, hang up my coat, stow my briefcase beside my desk, drape my stethoscope across my shoulders, and proceed to sort through the phone messages that have accumulated on the desktop, prioritizing them in my mind. Underneath this pile of papers, I discover my morning appointment schedule: a computer printout showing the appointment time, name, age, and chief complaint of each patient for the day.

“DeVito,”* I muse to myself, reading the first name on the appointment list. “DeVito, Shayleigh; age 7.” I don’t remember seeing this child before; the family must be new to the practice. My eyes drift down the list, but that first name sticks in my head.

*Names have been altered.

DeVito. I recall another DeVito, a child some 18 years ago. Ashley DeVito. The mother had brought her in for a 15-month well-child visit. The baby was breathing fast and had a fever. I can still remember her pallid complexion, the petechial rash on her torso, and the tense firmness of the enlarged spleen in the left upper abdomen. The WBC was 30,000; most were immature blast forms, the sine qua non of acute lymphoblastic leukemia.

Ashley DeVito lived until she was 7 years old, succumbing to her disease in 1992. Her mother had stopped by the office shortly thereafter to leave a remembrance card for me. On the front of the card there was a photograph of Ashley with the dates marking her birth and death printed below.

Funny how those things stay with you over the years, I think to myself.

The medical assistant drops a chart into the plastic wall-mounted bin outside my office door. It makes a small thud, signaling that my first patient of the day is waiting.

I step into the exam room to greet this family. The mother stands behind the door, reading notices on the bulletin board. When she turns her face toward me, I recognize her immediately. She is Ashley DeVito’s mother.

Extending my hand, I force a smile and introduce myself; a needless formality, I think, but you have to say something. “I see you have Shayleigh here for a visit. I don’t believe I’ve seen her before.”

“No, you haven’t. But you took care of my other daughter years back. Her name was Ashley.”

“Yes, I remember. I was working in another practice at that time. That must have been 15 years ago at least.”

The mother nods her head. I turn my attention to the little girl sitting on the exam table and smile. “What brings you in today?” I ask.

“I have lumps in my neck,” Shayleigh says.

“Oh, my; do they hurt?”

“Not really.”

“How long have they been there?”

“About a week,” her mother answers. “They’ve gotten huge, but she says they don’t bother her.”

I notice the bulges on either side of the child’s neck. She seems a bit pale in complexion, but otherwise comfortable.

“Has she been sick recently?” I ask. “Any fevers, sore throats, runny nose, cough?”

The mother shakes her head. “No, she’s just tired all the time. That’s not like her. I got concerned when the lumps started getting bigger.”

“Let’s have a look,” I say, dropping the chart on the countertop and stepping over to where the child sits on the exam table.

I place the pads of my fingers on either side of Shayleigh’s neck to feel what I can already see to be significantly enlarged lymph nodes. I palpate down the front and back of her neck, under the arms, at the elbows, the upper quadrants of the abdomen, and the inguinal regions as well. I look closely at the skin, ask her to open her mouth wide, and examine her throat with a small penlight. I stroke her hair and push it back behind her ears; then I step back to where the chart rests on the countertop.

Shayleigh’s mother has watched my every move. She has seen my hands move over her daughter’s body from one major group of lymph nodes to another, and she has watched the expression on my face when her daughter took a deep breath at my request as I held my hand against her belly. This mother has learned a lot by watching doctors over the years. She is no fool, either.

“Well?” she asks, studying my face.

“I can feel enlarged glands in her neck, under the arms, and in the groin. Her spleen is big, too. Her throat looks okay,” I add, struggling to find something good to say.

“What do you think is wrong?”

I shrug my shoulders. “I’m not certain. She may have some sort of viral infection. You can see mono look like this. Then again, it could be any one of a number of things. Bottom line—I think we need to order some lab tests, and I want to get a chest x-ray as well.”

The mother waits silently as I prepare the forms to order the studies. I check the little boxes meticulously and hand her the papers. “I’ve asked them to run the tests quickly and give me a call. We should have some preliminary results by the afternoon. I’ll give you a call as soon as they come in.”

I open the door, and Shayleigh walks out past her mother. Then this mother, whom I had first met 18 years ago, turns to me and says, “What’s the worst-case scenario here?”

I clear my throat. “She could have something similar to what Ashley had,” I say.

She nods her head, and walks down the hallway behind her daughter.

The rest of the morning is a blur of busyness—several children with colds, one with pneumonia, a couple of kids with ear infections, one with strep throat, another with a sprained ankle—bread and butter pediatrics.

In between patients, I find a note lying on my desk: “DeVito—chest x-ray normal. No hilar adenopathy.” That’s good, I think. Now all we need is the blood work. Cheer up—maybe the mono spot will be positive. Wouldn’t that be a wonderful thing to be able to report? She’s got mono, Mrs. DeVito. Yes, that’s right, mono. She’ll be a bit under the weather for the next few weeks, but she’ll recover fine. Just a little virus, that’s all. Wouldn’t that be great?

Monday, 12:30 I hunt through the refrigerator in the conference room and find the remnants of last week’s drug-company–sponsored luncheon—some chicken, sweet potatoes, and corn. What luck! I ran over into the lunch hour with morning patients and didn’t have time to step out for a bite, but here—sustenance. I prepare a plate and pop it into the microwave.

Monday, 14:15 Mary, our receptionist, puts the preliminary results of Shayleigh’s blood tests on my desk. The CBC shows low numbers across the board—a pancytopenia. At 6.4 g/dL, her hemoglobin is half of what it should be; the hematocrit is 15 points below normal; the WBC is 3,300, also low; the platelet count is 35,000.

I take the slip of paper up to the front desk to where Mary is sitting. “You’re sure about these numbers?” I ask, pointing to the paper. “This is 35,000, not 350,000?”

“I read each value back to the technician; she confirmed them.”

“Did they say when they’d have the results of the peripheral smear back?”

“They’re doing that as we speak. The tech said they’d call as soon as they’re ready.”

I walk back to my desk and sit down, staring at the numbers. A pancytopenia. Something is suppressing this child’s bone marrow. An overwhelming viral infection perhaps? Or something worse?

The familiar thud of a chart dropped into the bin outside my office door breaks my train of thought. I push my chair back and stand up. Another patient is waiting.

Monday, 15:30 Still no word from the lab on the blood smear. I’m getting a bit antsy. I decide to call Children’s Hospital. Flipping through the Rolodex beside my phone, I find the number for the pediatric hematology-oncology service. A female voice answers. I tell her my name and ask if one of the attending physicians is available for telephone consult. The voice asks me to hold one moment. After what seems an eternity, another voice breaks in: “This is Doctor Jones.”

I introduce myself and present the particulars of the case: an afebrile 7-year-old girl with 1-week history of diffuse lymphadenopathy; splenomegaly on exam; negative chest x-ray; and pancytopenia. No, the results of the smear aren’t back yet, but I wanted to call for a consult now.

“Well, let’s think positive. It could turn out to be an overwhelming viral infection. She’s going to need a bone marrow. I could give you an appointment for tomorrow at 10 o’clock, or you could have them call us directly.”

“I’ll take the appointment. I’d feel better knowing they have a scheduled time to see you.”

“Fine. And, if you do get the results of the smear before 5 o’clock, would you phone them down to us?”

“Will do. Thanks.”

Shortly thereafter, I receive a telephone call from a doctor at the commercial laboratory. “Hello, I’m Dr. King, one of the hematopathologists here. I wanted to report the results of a blood smear on Shayleigh DeVito.”

In 25 years of pediatric practice, I have received only two direct phone calls from hematopathologists. One was 18 years ago; the second is now.

“I’m afraid that there are—”

“Blasts,” I say out loud, almost against my will.

“Yes, afraid so. All lymphoblasts. This child has acute lymphoblastic leukemia.”

Monday, 16:00 I call Dr. Jones to give her the news. “Have you told the family?” she asks.

“Not yet. I wanted to let you know first.”

“We can let them know when we see the child tomorrow if you prefer.”

“No, that’s okay. I’ve had to do this before.”

“Unfortunately it’s something we do almost every day.”

“No, no. I mean, I’ve had to break the same news to this family 18 years ago. They had another daughter at that time. She’s since died from acute lymphoblastic leukemia.”

Dr. Jones is speechless; then, in a low whisper, an expletive escapes from her throat.

Monday, 16:15 I punch the button on my telephone to ring the front desk. Mary answers. “Any more patients on my schedule for the afternoon?” I ask her. “None? Good—please don’t book any more. Thanks.”

I hang up the phone, then dial again. Shayleigh’s mother’s voice answers. “Mrs. DeVito?” I ask, needlessly.

“Yes?”

I go through the unnecessary formality of identifying myself. She knows who is speaking to her. She’s been waiting for this call all day.

“I’m afraid I have some bad news. We got the blood work back. Shayleigh has leukemia.”

Her voice is remarkably calm. “I thought so,” she says. “I mean, I was really hoping otherwise, but, well—somehow I just knew.”

“I’m terribly sorry,” I say.

“Well,” she says, “if anybody was going to tell me, I’d rather it was you.”

That may have been true. But for me, it wasn’t any easier the second time around.