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A Piece of My Mind
February 11, 2020

Such Promise

Author Affiliations
  • 1Children’s Hospital of Philadelphia, Philadelphia, PA
JAMA. 2020;323(6):511-512. doi:10.1001/jama.2020.0252

A 16-year-old girl presents with fatigue and pancytopenia.

Rewind 1 year: she is new to this high school in the city, nearly an hour drive away from her suburban home. No one here knows her story; her fanaticism with Shakespeare camp; the slanted floor in her bedroom; the leather journal from her dad on her nightstand; dozens of cards and sticky notes from her mother (I love you) in the top drawer of her desk; bullying by classmates on AOL instant messenger, and her quiet desire to escape them.

Most of the students at this private high school already know each other. Friend groups were established long before she entered the tall glass doors. She tries to find where she fits in, wondering if she is athletic enough for the cool girls, creative enough for the artists, smart enough for the editors of the school newspaper or members of the debate club. She is unmoored, yearning for a sense of connection.

She tries out for the cross-country team. At the first meet, she surprises herself and her coach by finishing at the head of the pack. By the end of the first season, the coach pats her back and says, “Such promise! Such promise!”

In the fall of sophomore year, with the prospect of more cross-country meets and Friday night team dinners, she feels hope for building more genuine friendships.

And then she grows tired.

It doesn’t happen all at once. There is no cataclysmic event—but there is a beginning.

One afternoon she has trouble keeping up with her teammates. With shortness of breath and aching legs, she makes an excuse for turning back early. Perhaps she is coming down with the flu? For a whole week she can’t keep up. And then another. She tries vitamins and protein shakes, sleeping more and sleeping less, hydration and electrolytes.

When she can barely run at all, she finally tells her parents.

They are attentive and concerned. They bring her to the pediatrician in her hometown who orders a complete blood count. There is a macrocytic anemia, as well as low white cells and platelets. She is referred to a hematologist.

The girl worries most about her grades and she feels sadness for the loss of running. She misses the afternoons with her teammates, moving as a pack along the Charles River. Her loneliness deepens.

Her mother is scared but does her best not to show it. There are more sticky notes. Her father is so fearful that his daughter’s medical care subsumes him. He stays up at night reading textbooks and medical journals. He contacts doctors and nurses and talks to everyone he knows until he gets his daughter to a renowned specialist.

This hematologist is a smart, no-nonsense woman who will end up caring for this girl for more than a decade. She performs a bone marrow biopsy that reveals 10% cellularity. Someone uses the term “empty marrow.”

It is bewildering and frightening—and yet, in some ways, “emptiness” makes sense: emptiness, as in the opposite of fullness, fervor, buoyancy, brilliance. If you are “empty,” you certainly cannot be “excellent.” There is no promise in emptiness. She will never be a great runner. She is struggling in AP chemistry; she will never excel in science. Although she spends hours and hours writing and rewriting new phrases, her classmates seem to know far more Chinese characters than she does.

我不知道为什么我觉得这么累.

I don’t know why I feel so tired.

At her first appointment, the hematologist asks the girl how much she would like to know.

I would like to know as much as can be explained to me.

The doctor is direct and to the point. There are many disease processes that could cause these marrow findings; the presentation is not consistent with any textbook diagnosis. She will start by testing for a range of genetic syndromes and then consider other etiologies.

Doctors’ appointments take up many afternoons. Weekends are for homework and sleeping. Forget about parties. Forget about track meets and dances. As the months go by, so do the opportunities for building friendships. And how can she explain this experience to any of her friends? There is not even a name for what this is.

There are months of testing and trending lab results. Visits to gastroenterology and infectious diseases and endocrinology specialists. She receives a postcard from Hawaii with a drawing of a coral reef and a snorkeler. It says, “I heard you have been unwell. Hope you feel better soon.” How does Uncle Chuck in Hawaii know what she is going through? That her bone marrow is empty and no one knows why? A sense of unease goes unspoken.

In the silence, she becomes expert at pretending that everything is fine. There are bad days and better days. Every test comes back negative. It is sometimes relieving, often disheartening. One morning, when she is tired just getting out of bed and putting on her clothes, she goes quietly to her mother. It’s just another day, no worse and no better, but in the scope of her teenage life it feels endless. They lie in bed together for a long time. Her mother rubs her head as she cries softly. Without changing anything, she is comforted.

She stops expecting answers. There are theories, which she finds are enough to move on and stop waiting for certainty. She believes that her doctor has taken her questions to heart. “Possibly virally mediated bone marrow suppression.” There will be yearly bone marrow biopsies, labs only if symptomatic.

Her counts come up and her doctor seems reassured that the marrow is recovering. But the girl still does not feel like her old self. And she finds it more disquieting to feel tired and empty when the tests on paper look normal. The only choice is to keep going.

After 10 months, the fog starts to clear. Slowly and gradually, without clarity or a crisp transition to wakefulness. There are more days when it is not an effort to stay awake in class, to focus on homework, to walk around the neighborhood pond with her brother. By the end of high school, her energy is almost back to normal.

In the aftermath of all this she will continue to question her own capabilities—physically, intellectually, and socially—for quite some time. In her senior year she will run again, but she will never place near the top, or even close. The cross-country award will go to her faster, stronger co-captain. For many years whenever she has a sore throat or a runny nose and feels the fatigue that comes with a virus, she will think: “This could last forever.”

As life goes on, she is surprised by her own achievements: the Asian Studies Award at her college graduation; acceptance to medical school; residency match day. During her fourth year of medical school she goes on a date with a tall Australian. Their first date is a run along the Charles River. He shares with her This Is Water; she sends him A Small, Good Thing. She is swept up and opened to the electrifying feeling of kind, gracious love. She feels an immediate connection to him, though she won’t let herself believe the relationship will go very far and certainly can’t imagine she will be lucky enough to marry him—though someday she will.

The fear of getting sick will fade, but it will not disappear. What persists is an appreciation of fragility and awareness that illness arrives unannounced.

As a pediatric resident, she is drawn to oncology for its medical complexity, the acuity and chronicity, the multisystemic involvement, and deep connection with families. She is particularly drawn to cases with ambiguity: there were complications with first-line and second-line treatment. A child has relapsed again. The adverse effects were unbearable. The diagnosis was unclear to begin with. The family has had enough. She finds it is a challenge and a privilege to be present with families in times of uncertainty.

During one of her fellowship interviews, the girl finds herself walking through the halls of the clinic where she was once herself a patient. One of the nurses recognizes her, so many years later, in a black suit and heels instead of sweatpants and sneakers.

“Haley,” she says, reaching out to give her a hug. “This is amazing!”

The girl feels her cheeks burning. She wonders what the tour guide and other applicants are thinking. Then she catches her breath; for a moment she is back to when the nurse drew her blood, holding her mother’s hand, the sticky notes. She is grateful for the support from her family, the caring doctors and nurses, her inner strength. The moment passes. She steadies herself and smiles.

At the end of the day she leaves the hospital, down the familiar sound staircase that plays music notes with every step. She looks up at the blue sky overhead and is overcome with joy as she hears a voice from within that says, “Such promise! Such promise!”

Section Editor: Preeti Malani, MD, MSJ, Associate Editor.
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Article Information

Corresponding Author: Haley Newman, MD, Children’s Hospital of Philadelphia, 3401 Civic Center Blvd, Philadelphia, PA 19104 (newmanh@email.chop.edu).

Conflict of Interest Disclosures: None reported

Additional Contributions: I thank my family and doctor for granting permission to publish my story.

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