July 12, 2005

Editor’s note: Last December, The Baltimore Sun published a series by staff writer Diana K. Sugg and photographer Monica Lopossay about the dilemmas in the care of dying children as seen through the struggle of 12 year-old R.J. Voigt. Now Sugg and Lopossay have turned the reporting on themselves in pursuit of questions that so many journalists wrestle with on stories large and small. You can begin with the multimedia — which includes audio and video of Sugg and Lopossay — or with Sugg’s essay below. (Sugg is a member of Poynter’s National Advisory Board.)

A Poynter Multimedia Look at the Story Behind the Story
The Angels are Coming – The making of If I Die

For R. J. Voigt, the boy who saw angels

I walk out of the newsroom, and, like every night for months, I search the sky, looking for the friendly moon that had been my sign. I hobble across the empty parking lot, my left side weighed down by a heavy bag of notebooks. The cold air feels good. I drink in the quiet, and I drive home slowly. The hardest story I’ve ever done will roll off the newspaper presses in the next few hours. Soon, I should fall into a dead, triumphant sleep.

But I find myself sitting up in bed, in the dark, staring at the number on the digital clock. 2:36 a.m. I could almost hear the rumble from the printing plant, see the growing stack of front pages of The Baltimore Sun stamped with the huge picture of R.J. Voigt, the boy I’d watched die, the boy I used as the example. I could hear the voice of Sun photographer Monica Lopossay, small and shaky on the phone, “What if we hurt him? What if he didn’t want it?”

For months, I’d hovered over every detail of this story, cherishing and loving it and fiercely willing it to life. It was the kind of story I was wired for: emotional, raw, and unspoken. It was about the curse that goes with the blessing, about the dying children who suffer too much, because everyone is trying to save them, and no one wants to admit they will die.

I tackled this story with two articles of faith. I believed a story could help these children, and I was sure I was the reporter who could do it. But on that December night, I finally faced my reckoning.

To get a great story, how much had I taken advantage of R.J. and his family? Would the story hurt his already devastated mother? What about all those other moms who’d fought to save their children? Had I been brave enough to tell the truth? Did I even know the truth? And in the end, how much would it really matter?

Following my ghosts: going after the stories that haunted me

In many ways, I’d been headed toward this story my whole career. While other reporters happily moved on from their stints on the crime beat, I, as a young reporter, didn’t want to leave it. It awakened questions in me I couldn’t let go of. I witnessed the often sudden and arbitrary nature of death and realized that for some unknowable reason, I’d been spared. I took over the medical beat and found myself exploring these moments, tracking back to the hours and days before death.

For me, death was a window into so many important things in life. I wanted to understand this sacred ground.

“I knew the big secret in journalism, which is that we often give up too soon.”

Part of it was surely personal. I’d grown up side-by-side with a sister who is developmentally disabled, for whom everything is a struggle, so I had learned compassion. At age 24, I got hit with my own health problems, among them a rare, disabling form of migraine that causes partial paralysis, and blood pressure so low that I often couldn’t work, much less stand. Today, I walk with a slight limp, write with a permanently weakened right hand, and go about the world with a feeling for problems that defy solutions, for people whose sorrow is unspoken.

So even as colleagues chided me about writing depressing stories, I held onto the words of Poynter’s Chip Scanlan: Mine your own emotional territory. Do the stories only you can do.

As health problems forced me to relinquish breaking news and my hard-charging style, I arrived at an obvious yet crucial insight: if I could only do a few stories, they should be the ones that were calling me.

At first, I approached these stories warily, venturing slowly down quiet, long neglected roads, into the terrible loss of stillbirths, or the moment that a doctor utters the worst words to a family member. They were among the most difficult I’d ever tried, but these articles did something remarkable for me: they taught me that I noticed stories others never saw, and I could get inside intimate arenas where few dared go. And even if I didn’t always have the physical strength, my heart was big enough to carry other people’s hurt.

It was my gift. Over time, I saw how these stories opened up taboos and brought healing. I got a glimpse of my power to do good in this world, and it emboldened me.

By the time I came across the story about the care of dying children, I decided to go all out. I gathered clues, amassed medical studies and sat down for long, soulful conversations with nurses and doctors. I could have written this article at almost any time. But something was missing.

I’d learned that I could get to places I’d never imagined asking to be, if only I had the courage to ask. So for two years, while working other stories, I circled the secret world of dying children, quietly knocking on doors, hoping for one that wasn’t locked. I knew the big secret in journalism, that we often give up too soon.

By June of 2003, I had won a Pulitzer Prize, an amazing blessing, and was trying to make the most of the momentum – and added confidence and clout — that the prize gave me. And months of conversations and rejections with staff at the Johns Hopkins Children’s Center had given way to a promise: a few minutes with one mom, whose son was dying. With a gentle swish, a staffer pushed open the door. I felt at once determined and gentle. I stepped across the threshold.

Getting inside the story: how close is too close?

That first day, I had little but my standard gear: two new notebooks, a pair of peanut butter granola bars and a bottle of water. But my head and heart were full of the lessons of 18 years of reporting.

My moves were almost automatic. I had grown accustomed to talking with strangers in crisis. It was almost easy for me to explain to the mother who I was, why I was doing the story.

It had also been easy for his mother, Michele Voigt, to reject The Baltimore Sun when she was asked about this project initially. But when she met me, as she would later tell me, she sized me up in two minutes. She said she saw kindness in my eyes, prompting her to change her mind. After two hours of conversation, she agreed to meet Sun photographer Monica Lopossay. I used the only strategy that works for reporting in these situations: start small. Asking for lots of time or a big commitment will overwhelm people. It’s best to just be there awhile and talk. Almost always, they’ll invite you to stay longer.

Eventually, I would interview 18 families in depth. And while all had their own dynamics, the case of 12-year-old R.J. Voigt was the one I would see up close. It clearly showed the anguish of parents and caregivers, as they struggled to care for a child who could not be saved.

After three years of every possible treatment for a rare, aggressive cancer in his nasal passages and jaw, after getting perhaps an extra year of life, R.J. was dying. They were at a pivotal point, with the hospital staff trying to pioneer a more open approach to death, to help his mother let go and craft a good ending for R.J.

Often in my work, I had no choice but to reconstruct events. But I knew that being a witness would power my article like nothing else. I was where I wanted to be, inside the story. It was raw and playing out all around me.

I felt like a theatergoer suddenly thrust up on the stage. With R.J.’s face so swollen and angry and red, it was sometimes difficult even to look at him. I tried not to notice the gurgling of the suction tube and the smells of leftover applesauce and urine. In some moments, I couldn’t help crying, couldn’t help asking myself if R.J. was suffering too much.

When he had to go to the bathroom, or if they were bathing him, Monica and I left the room. Other times, as during his most hated procedure, the change of the needle in his chest, I was surprised that neither he nor his mother asked us to leave.

“It was the story that made me doubt myself more than anything I’ve ever done, and other times celebrate myself and feel it was the story I was born to do.”

At those times, the trade-offs were clear. If the nurse and his mother didn’t change the needle in his chest, he couldn’t get his pain medicine. To help him was often to hurt him.

Sometimes, I wondered if I was doing the same thing. We seemed so close, maybe too close. I could hear the rapid, harsh click of Monica’s shutter, the scratch of my pen across the pages of my notebook.

When Monica and I stumbled out of the room that first week after a particularly emotional scene, we plopped down side-by-side on a bench in the waiting room. I knew what she was thinking, because I was thinking it myself. Vulture, vulture, vulture.

For a while, hard-won wisdom from other stories steadied me. I knew that this story could change the emotional destiny of other families. Maybe a mom could ask, “Are you scared?” maybe a dying boy could say, “I don’t want this anymore.” Maybe other children could die in peace; parents could live on without regret.

Deep down, I worried that, to achieve that good, R.J. and his mother might pay a price.

Reporting in close quarters

Soon enough, I was chatting with other moms on the pediatric oncology floor, wearing sweat pants, slugging down big sodas and staying wide awake all night, just like the “onc moms.” At times, with late night pizza deliveries from Magoo’s, R.J. playing his video games, and Michele dusting and playing Motown music, the place had the feel of a slumber party.

The clutter of the routine, of all the things that have to be done, made it easy to put off the most important things. I caught up on the specifics of R.J.’s case and got to know his nurses. I learned the code words and the rituals. It was much easier to get his mother’s feelings, to follow the ups-and-downs of her last minute search for a miracle, than it was to face R.J.

He was the pool of quiet in the middle of the room. And although he’d given clear instructions that he wanted no more chemotherapy and what he wanted for his funeral, he seemed to be holding in a lot of secrets. The doctors and nurses believed he was doing what so many other children do: hanging on for his mother.

At first, I tried a list of “starter” questions, which he dismissed in the two minutes he allotted me during the television commercials. He was 12. He wanted to watch cartoons. Plus, his tumors and breathing tube made talking an uncomfortable, difficult chore.

When he did try to talk with me, I seized those moments, as if his garbled words held the magical wisdom that would help me make sense of the dilemmas playing out in that room. I’d ask him to repeat it, bending closer, watching his lips, wracking my mind for what he could be saying. He was angry that I couldn’t understand him. A few times he’d borrow my pen and scrawl out something on my notebook, his big messy letters pressed through over my own writing.

Those communiqués were simple: he was tired, he was hungry, he didn’t feel good. He wanted his mother. Sometimes, no one else was in the room, and he wanted his strawberry milk, or needed me to squeeze off a few drops of saline into the breathing tube in his neck. A few times, he’d comment about a movie he was watching.

I couldn’t help but like this kid. He was a brainy, somewhat nerdy boy who loved nature and science. He reminded me of my own younger brother at that age, his nose always in a book. Then one night about 2:30 a.m., as Monica and I were getting ready to leave, he reached out to me for the first time. “Want to play chess?”

I hesitated for a second, not sure if it was appropriate. But then I did what is always the best policy: I followed my heart. We hunkered down over his hospital tray and traded moves. R.J. leaned his heavy head on his hand and clumsily moved the pieces. Even in that short time, I could sense his fierce competitive instinct. I must guiltily admit that I let him win.

Later, I tried to remember why I never played chess with him again. Maybe that would have been better for him, but I knew that wasn’t why I was in that room. I was supposed to be there to get the story.

Sometimes, it was an easy call. When R.J. cried out for someone to hold his hand during a medical procedure, and I was the only person who could help, I thought for just a second before dropping my notebook and pen. Other times, it wasn’t so obvious that there was something to do. If he was struggling with something and I moved in to help unasked, he’d often lash out with a fury: “I don’t want any help!”

When questions have no answers

Back when we first arrived, I had explained to R.J. what I was doing. He’d once been in a segment on local television, and he read the comics and sports in his hometown paper. But I sometimes wondered if he understood what we were doing. Every once in a while, I’d show him a copy of The Baltimore Sun and talk to him a little about the story. He’d look at me, but he never did more than give me a nod.

Monica and I would come to be in that room for 25 days and nights. I wish now that I’d sat near his bed more, just being quiet and listening and watching. I wish I’d written out questions in a pad and left them with him.

On so many of those summer nights, I’d leave the cool hospital and head out into the humid air, and I’d look up at the sky. I don’t think I’d ever noticed before how beautiful and huge and full the moon was. It felt a little like everything in life we overlook, or we can see, but never really know. I came to think of it as R.J.’s moon.

The story was humbling. For many of my biggest questions, I could never get an answer. And as R.J. got closer to death, I realized the things I was witnessing were more powerful than my flimsy words could ever capture.

One night long past midnight, I was plopped on the floor, scribbling. His mother was tapping at her laptop, exchanging messages with the ad-hoc sorority of mothers across the country sitting at the bedsides of their own dying children. R.J., who had been dozing, started to stir. He pointed at the end of the bed with his long finger. “They’re coming,” he coughed out in his hoarse, old-man voice. “They’re coming.”

As his mother nervously asked, “Who’s coming?” and R.J. kept trying to tell her, the feeling in the room shifted somehow. There was a sense, even before he uttered his next words, that we were crossing into something big.

“The angels,” R.J. finally managed. “The angels are coming.”

My notebook holds no other details of what happened next. I have no other words for that moment, except the ones of R.J. himself.

In his last week, he became agitated and started shimmying for the corners of his bed. He kept asking people to shift him to different positions. When I was alone with him late one night, I moved him. But I went a tad too far; he wound up slightly off the edge.

“R.J., you need to slide back a little,” I told him, but he wouldn’t move. He seemed asleep. I called out for help, but no one came. The little tree they’d put up to give him one last Christmas was twinkling in the corner. I stood there awkwardly for a bit, bent over the bed.

“It was a big question for (Monica and me); how to tell the story but not go too far.”

Finally, I did what felt natural. I settled my arms more securely under his bony frame, holding him, wishing I could fix him, could comfort him. I suppose that in some ways, I was holding all the victims I’d ever written about, embracing the scary, the things we don’t want to face.

“It’s okay, R.J.,” I found myself whispering. “I always wanted to hold you.”

I really hope he heard me.

Arbiter of the truth: judging your material, yourself

I should have been writing all along. I should have marched into that newsroom and poured it all out, let it out onto the screen when it was fresh and sparkling and still alive. But after R.J.’s death, I needed to shift to a few other shorter stories first. And I was bone tired.

To get back into it, I started paging through my interviews and medical studies. I tried to soak myself in the story, to let the notes and phrases marinate in my head. At my desk, in a cozy corner of the newsroom, I pulled at my hair and twisted it. I tapped my feet. I stripped the clauses and the phrases and dug into the dry dirt of my notes. I tried to will the story into life.

Days when I was sick, I propped myself up in bed at home, notebooks spread all around me, blue ink stains on my white comforter. I tapped on my laptop. My words seemed awkward, my sentences crude. Trying to write brought me head-on with my dilemma.

I kept coming across more information about how even the best physicians are operating on little knowledge about how to care for dying children. Much of the issue was morally ambiguous, gray territory. Everyone could agree they didn’t want children to suffer unnecessarily, but what suffering was worth it? Who was to say, especially me, a career gal who, at age 38, had just gotten engaged and had no children, although I someday hoped to?

But I was supposed to make sense of it. I had to reconcile the conflicting accounts. I was to be the arbiter of the truth. I was the one who would choose which people to quote, which moments to describe. What if my articles judged the medical professionals or the parents unfairly or caused them more suffering?

When the story keeps going, struggling to handle the family

At times, I wondered if I would have to make a choice between hurting R.J.’s mother, Michele, and telling the truth of R.J.’s suffering. That issue loomed larger after a newsroom shakeup changed the ranks of editors and the story got passed through many different hands. It grew from one article, to two, then three, then four. Months were passing.

I struggled to keep the appropriate distance with R.J.’s mom. I talked to her at least once a day. I always had more questions for her. I needed her. And she needed me. She endured a terrible first year, even had to be hospitalized in psychiatric hospitals after R.J.’s death. R.J.’s father had not been in the picture for years, and other family members lived three hours’ drive from the hospital. I was one of the few people Michele could talk with about the fight to save her son.

Over time, in long cell phone conversations, we peeled away the layers of what had gone on. It was an astounding reporting lesson. I am one of six children, so I had learned that everyone has their own truth. But this story taught me how many versions there are, and how people’s versions change over time.

Often, Michele just needed someone to talk to. She’d shared so much, it seemed wrong to not listen. And I wasn’t the kind of person who would say no. I cared about her, as I cared about the story. That compassion was my blessing and my burden. For even as it made me anguish, it was the same trait that gave me vision for this story and got me into R.J.’s room.

What made it all work was that Michele was struggling with the same questions I was. She often asked them before I did. Unexpected details and insights were often the result. And my main role was clear: I was doing the story. She knew the line, even before I had to say anything. Once, when she’d heard I just finished a draft, she blurted out, “Can I read it?” but just as quickly caught herself: “Oh, but I’m not supposed to do that.”

Still, many of the questions I asked her were painful. And sometimes, after those conversations, or reading R.J.’s journal, I did feel guilty. I judged myself.

I had a nightmare that Monica, the photographer, and my terrific editor, Patricia Fanning, and I were looking at the photos. Suddenly, R.J. was in front of us, lying on his stomach, reading a book, his legs swinging in the air, the way his grandmother used to describe him.

I got up and ran around to see him. His face was thin and healthy, the way I’d never seen it in real life. I joyfully cried out hello. Then he started to shout, to scream, the very thing I feared he might be thinking about this story and me. “No! No! Noooooo.”

Maybe I should have left this whole messy topic alone. Maybe this just wasn’t a newspaper story. Maybe, in my ambition, I had gone too far.

Facing your power, your doubts

In the newsroom, in the vacant office tucked away in sports, I sat lost amidst boxes of files, stacks of notebooks, bulletin boards peppered with Post-it notes. I stared at the fortune cookie saying taped to my computer screen. “Where there is a will, there is a way.”

Feeling sick to my stomach, I made the call to the one person who could help me, a mother from another story. A few years before, Donna King had reluctantly shared the experience of being with her dying son, Ryan, as emergency room doctors did the brutal and physical work of trying to resuscitate him. Her friends and family had told her not to talk with me. But she said I had made it safe. Their story became the framework for that article. They were the emotional touchstone that drew readers and spread the word about relatives staying in the hospital room, even during traumatic episodes.

Now, two years later, on the phone with her, I confessed my fears. Donna told me what she had seen in her son Ryan’s years, and with others since. She reminded me that even the most painful things are worth telling. That the very stories we shy away from are the ones we should do.

So just as I was about to turn back, her words beckoned me on. “Keep going,” she said.

One last push: finishing the story, letting go

In many ways, I had become like the “onc moms” and the physicians I’d written about. I kept reporting, trying to find the one quote, the one scene that would bring it all together. I needed to find the thing that would save my story and was so busy trying to get it right, that I couldn’t see I would never get it right. I could only do my best.

I was working seven days a week, neglecting everything in my life, living my own fiction, that once this story was done, I’d have time for everyone and everything, that once I stopped working so hard, my health would be better. It was much easier to turn down social events with an excuse of work, rather than illness. It was much better to believe that I had control over it.

In the last frantic month, I was operating under another under delusion: once the story was published, I’d know if I’d gotten it right. I would have my verdict.

I plowed through the rewrites. I tried not to be too disturbed when my editor, Patricia, a healthy eater who loved tofu and vegetables, started going to the vending machine for Suzy Q’s and barbecue potato chips. At times, in all the last editing, all I wanted to do was bundle up every scrap of copy, every note I’d taken and carry it home, keep it safe with me.

But I could feel my stories coming together. Patricia helped me see that I could weave a rich story that showed the forces at work, articles that wouldn’t judge anyone, but would help readers understand. I tried to explain why it was so easy to go so far and give the perspective of all the people involved.

A week before the stories were to appear, I got a good sign.

I had been in the office so long that day had turned into night, and night into early morning. I had just realized how to end the series, on the Christmases past, and R.J.’s love of snow. I pushed out the doors into the cold air, too tired to look up for his moon. But it was unusually bright outside. I tipped my face up to the gray sky, and I could feel lots of tiny flakes blessing my skin.

I stood in the parking lot of The Baltimore Sun that glorious night, the night of the first snow. I looked up at all the shimmering flakes. In that hush, it felt like a thousand angels were near me, and I gathered in all the gifts of the story. The lessons to go after the hard stories, to savor the fleeting moments, to be quiet, to accept that some questions have no answers. I knew I would never stop trying to learn and read and get better at my craft, but I also knew that the intangibles of kindness and curiosity were my own, and were enduring.

Alone that night, I marveled at the privilege of being a journalist. I had witnessed one of the great acts of a human being: to live until you die. I felt lucky, so lucky. Etched in my soul was the scrawled writing of Ronald Joseph Frank Voigt, and the biggest lesson he had taught me, the thing I now had to do with my stories: Let go.


The night before the first story ran, after talking with Monica, who was as exhausted and scared as I was, I barely slept. I thought about the family whose journey would have stayed private, had I not pushed and pushed. I thought about the power I had, that we all have as journalists. I prayed that my instincts had been right. I prayed that the story needed to be told and would help people. It was one of the longest nights of my life, as it should have been.

Sunday morning, the phone rang early, and a doctor pronounced, “It’s true.” On the web, mothers were already posting messages on their Internet support groups, almost frantically urging each other to read the first article, marveling that Michele and R.J.’s story was so close to their own. So many moms fought the morphine pump, so many didn’t or couldn’t grasp that their child was dying. Most were haunted by how that time was handled and the chances now lost forever.

Each day, as the next part was published, readers called. People told me that at first glance, they didn’t want to read the stories, but once they started, they couldn’t stop. The stories inspired them to do what they had never done: to talk about the gritty details of dying, about how they were going to handle critically ill parents, and what they wanted for their children and themselves.

Each night, before I left the office, I checked in with R.J.’s mom, to explain to her what she would see in the paper the next day. On the fourth day, at 3:40 p.m., Michele gave me her opinion. “Heartbreaking, and beautiful, and true.” Soon, she was using the stories in her grief counseling. She has recently begun training to help others by volunteering through hospice. She will never get over losing her son, but she is bravely trying to craft a life without him.

Over the last few months, after telling the story in print and online, I found myself telling the story in two new and intimidating formats. At Johns Hopkins Hospital, in the old, steeped auditorium where doctors teach one another, I spoke to more than 200 physicians and nurses. I did my best to describe what reporting this story had taught me about what medical professionals do right and what they do wrong in such cases. The room was packed to the rafters with attending physicians and division chiefs, silent in their white coats, listening to what I’d found. Later, as runner-up for a national health care reporting prize, I stood before the CEOs of the country’s biggest health insurance companies.

In both cases, my voice at times quivering, I could feel the quiet in the room. Never before had I spoken such truth to people so powerful. I knew then, like never before, the mighty force of one individual’s story. Anyone could forget a report about something called pediatric palliative care. No one could ignore a boy who saw angels, who’d scribbled to his grandmother after a medical procedure, “Grandmom, I can’t take it anymore.”

In those moments, I realized I’d been holding the story so tight, like a baton, a dispatch from a foreign country. But I had made it back from the dark jungle, and I could finally feel my grip easing. I was passing it on. I left that night knowing that the boy who’d wanted to be a researcher and a physician was already helping other dying children and their families.

The next door: one story leads to another

Still, there is something I can’t let go of, and writing this essay has helped me name it.

I think maybe R.J. was the proxy, the representative of every person I’d ever written about who has died. He was my chance to get at some of the mystery, and also to find some absolution. I realize now that I needed him to tell me what I was doing was okay.

In the aftermath, I’ve looked through my notebooks and dug around in the rubble, and some things give me comfort. R.J.’s biggest worry was his mother, and I helped her. And I recently found out that during that month we were with him, R.J. was apparently asking his mother every day, “When are Miss Diana and Miss Monica coming?”

Six months after the story ran, I discovered that R.J. had also been asking his mom when the story would come out. He wondered what I was going to write about him. I wish he could have read it.

But I will never know if he would have approved of the stories, or if, despite my care, there were times when he sacrificed some of his privacy or his dignity. The answers are buried with R.J., and in a strange way, maybe that’s better, because from now on, on every story I do, R.J. will be with me. A reminder of how far I can go as a journalist, and how carefully I must tread.

Now, as I struggle over which stories to do next, I think back to the morning R.J. died, and the strange thing that happened. After family and friends said their good-byes, after nurses bathed him, after I stayed behind in the room with him, standing quietly at the end of his bed, it was over. We all stood outside his room in a solemn clump, waiting for hospital staff to take his body away.

Somehow, in those minutes, the child in the room next door started smiling at me through the narrow window, waving and calling for me to come in. He was a young boy, maybe 4. I’d never seen him before and thought he must be confused. I tried to nod my head gently no. But he wouldn’t give up, making goofy faces and gesturing impatiently, as if he knew me.

I couldn’t help but wonder if somehow R.J. was sending me a sign, that there will always be another boy, another story. I can still remember the feel of that cold metal door handle, the way I slowly gripped it and stood there for a little while, unsure. I found myself smiling back at the boy.

Finally, I pulled the door open and walked in.


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I'm a longtime beat reporter covering health and medicine. I love finding and telling the hidden, human stories.
Diana Sugg

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