A Boy, His Mother and the Human Being Behind the Camera

This post was originally published on this site


RADCLIFF, Ky. — A purring air-conditioner and the distant warble of a television acted as a sonata on a stifling May afternoon in 2012. Regina Hensley, 45, initiated a dance with her son, Andrew Holland, 15.

“O.K., let loose a little,” Andrew said, quickly taking the lead. Regina sent a shake from her shoulders down to her knees and Andrew began to count.

“One, two, three; one, two, three,” he said, switching directions each time they reached the third step. After three strides back-and-forth across the kitchen, Regina dipped him and Andrew sent a high-pitched laugh up to the ceiling.

It was one of the last easy moments I filmed before things got bad.

I met Andrew and Regina earlier that year at Kosair Children’s Hospital (now Norton Children’s Hospital).

The inspiration for the story came the summer before, while I was interning at The Minneapolis Star Tribune. Two of my colleagues at the newspaper had a sick daughter.

Gracie’s prognosis was certain: soon death. Like Andrew, she was awe-inspiring to witness. I remember her beyond-her-years understanding coupled with childlike wonder, hope and joy. I also remember seeing her mom and dad as I came in and out of the office from assignments and wondering every time: How are they managing all this?

When I got back to journalism classes at Western Kentucky University that spring I came across a story in a local newspaper about a young boy who was battling a rare form of cancer called Ewing’s sarcoma. The town had named him “Mayor for a Day.” I reached out through Facebook Messenger: “I know this might seem strange but …”

He was 14 and just off a major scare in which an infection had raged against his chemo-weakened immune system. You would never have known it.

I walked into the room and introduced myself. He waved absent-mindedly, barely taking his eyes off the TV screen, where he was intently focused on getting past the next level of a video game. He diverted his attention only to check on his mom, which he did so often one would almost think she’d just survived a close call.

Regina beside Drew’s hospital bed: “God needs to back off of me.”CreditLeslye Davis/The New York Times

Regina was a recovering alcoholic who never seemed fully settled.

“You know how they say God won’t put more on you than you can handle?” she said one day. “Well God needs to back off of me.”

Always pivoting between Andrew and other patients in the hospital, Regina was a natural caretaker. She operated daily with the nervous energy of a person who, if she stopped treading water, would sink.

At home she multitasked: washing dishes, vacuuming and cleaning the bathrooms while waiting for the washing machine to finish. She juggled a variety of odd jobs: cleaning, cooking, cashiering, anything she could do to make money.

There was no time to focus on sobriety, but also no time to relapse. She was wedged between a precarious rock and a hard spot that somehow kept her upright.

Andrew was in his own teenage world, making plans for the future — obsessing over school, which college he would go to and which new girl he was crushing on. Everything about him was magnetic — his sarcasm, his bubbling-up laughter like a geyser ready to explode at the most inappropriate times, his spontaneous arrhythmic dancing.

Drew’s laugh bubbled up like a geyser.CreditLeslye Davis/The New York Times

He brought the weird out in you, too. And whatever he chose to feel, you soaked it up.

So when he transformed his doctors’ 50/50 prognosis to 51/49, the title we later gave a film we produced about him, the aura of hope felt real.

Months went by when he was in and out of the hospital constantly. His identity got wrapped up in cancer in a way that makes childhood illness worse than it already is.

He’d lost a lot of friends when he got the diagnosis. He assumed they didn’t know what to say or that their parents were spooked by the thought of a sick kid.

“I get it,” he would say with a purse-lipped shrug.

Over time, he made new friends via the hospital and found a network of support. He studied Japanese, played basketball and flirted shamelessly with every female nurse he came into contact with at Kosair.

He still wanted to pursue his “bucket list” even though he was going to “live a normal life now.”CreditLeslye Davis/The New York Times

He would stop them and say, “You know who you look just like?” With a dramatic pause, he would close his eyes, scrunch his face and thump his finger against his temple. Then, with an “aha!” look springing to his face, he’d pop off, “Reese Witherspoon!” or some other random celebrity with roughly the same hair color.

He could crack the surly, the serious, the exhausted.

That semester, I spent nearly all my free time either with Andrew or with footage of him, pulling late nights alone in the lab trying to figure out how his narrative went together. I was also trying to figure out how to be a journalist.

We celebrated his 15th birthday and had a simultaneous end of chemo party. Regina made a speech and thanked everyone for coming to celebrate her son and the “end to a long journey.”

For a few weeks, Andrew and Regina returned to normal life. There were no more treatments or hospitals. They waited for follow-up scans to see if Andrew was in remission.

I finished my project at school, and my relationship with the family transformed from documentation into friendship. Drew was better and the short doc about them had a hopeful, inspired ending.

We still spent a lot of time together — shooting up Coke cans in the backyard with BB guns, going to the movies and indulging in junk food when his appetite started coming back. We talked about college and what he wanted to become. He got a camera and a bootleg version of Adobe After Effects and started making short films. His hair regrew in a dirty blond swath over his pale skull. He still wanted to pursue his “bucket list” full force even though he was going to “live a normal life now.”

A few weeks later, scans showed the tumors had taken root in his spine. The cancer was back more aggressively than before.

That May, after Regina and Andrew glided across the linoleum in a moment of joy, I graduated and prepared to move to New York for a summer internship at The Times. The day I went to Drew’s house to say goodbye was the first time I saw him cry. We both broke down and I promised him I’d still be there.

Drew and his girlfriend together in the hospital.CreditLeslye Davis/The New York Times

Alongside treatments, Drew got a job, went back to school and eventually fell in love. She was a smart, kind, generous girl who was in and out of the hospital, too, battling Lupus.

When it ended, he suffered a more gut-wrenching pain from heartbreak than anything the cancer had ever inflicted. I worried about him most on those nights when he called crying about that break up. It was such a regular teenage experience but every bit as serious to him as the cancer.

Drew and Regina.CreditLeslye Davis/The New York Times

As a mother of a sick child, Regina faced brutal scrutiny from people for her erratic behavior. She received criticism for almost anything that took up her time that wasn’t Drew. People made comments when she got a boyfriend, whenever she started working a new job and even when she took too many smoke breaks.

Watching Regina stand firm in the midst of it all gave me a deep respect for her. It also helped me to empathize with my own mom, who raised my sister and me alone, and shed light on the painstaking work of maintaining selfhood when all your time is spent on another person.

During the months when Drew was receiving hospice care, Regina slept on the floor beside him.CreditLeslye David/The New York Times

I started shooting again, forging an agreement with Drew that I’d document only as much as he wanted me to. But now I wasn’t just a student or a friend. I was a professional journalist. And figuring out the new dynamic was a struggle.

At moments behind the camera you slip out of reality. A subtle transformation happens until suddenly the scene that’s unfolding in front of you isn’t part of your experience. It’s a file inside your camera. You are responsible for the angle, the exposure, the audio levels — you’re a technician with a job to do that requires focus.

I can say firsthand that when you don’t focus, the story you’re trying to convey suffers. But the access that a true emotional connection and foundation of trust affords you is worth more than any amount of camera expertise.

There were moments with Drew when I felt the relentless pull to just be a human. When people who barely knew him were commenting on social media, implying that he was about to die while he was very much still alive, terrified and reading those comments in horror, it was a struggle not to intervene.

Often I just wanted to hang out with him in the living room and play video games instead of filming the conversation happening in the next room. But to do that would mean missing Regina telling the hospital nurse that she felt on the verge of relapsing.

By 2014, tumors were growing in Drew’s brain. Regina knew the severity and dealt with it the best way she could. She didn’t tell Drew that there was a chance he could lose his motor functions, his ability to talk and even his vision before he died. When he turned 18 and the doctors had to tell him, he didn’t believe it anyway. He begged for every treatment available: the painful and the experimental.

He was a man now. His appointments and hospital stays were moved out of the children’s hospital, away from the nurses and friends with whom he was familiar.

In 2015, a few months after his birthday, Drew was at the theater (one of his favorite places) when violent pain surged through his body and erupted into screams. By the time they got him to the hospital he was pleading, “Just kill me, just kill me.” They sedated him with pain medicine that would be pumped through his frail body until the day he died.

I flew down to Kentucky to be with him and Regina, and to document the monthslong hospice dying process. Regina slept on the floor beside him and, with the help of some miraculously supportive friends, administered his pain medication every couple of hours.

Though I had to leave to film other projects, Drew was never far from my mind. Regina called when it was time for me to come back to say goodbye.

Inside his room, Drew was lying on the bed unconscious, sedated with an unbelievable amount of pain medicine. Someone at the hospital had drawn angel wings on his frail back.

His breathing set a labored pace of air exchange for the whole room. It was shallow and sounded painful, even as he slept. In order to hug him you had to lie in the bed beside him, so I did. I told him how much I loved him and cried more than I wish I had in a room full of devastated friends and family who were all fighting to keep it together.

A reporter and a friend.CreditDanny Guy

My friend Danny Guy, who helped with the last days of filming, took this picture of us with his cellphone and sent it to me later that night.

At first I hoped no one would ever see it. The human side of me had taken over in that moment, and that was at odds with my career. It felt terrible to wrestle with ethical and professional questions when all I wanted to do was be with my friend.

It has taken these two and a half years for me to process Drew’s death.

I think most journalists would relate to my feeling that it’s selfish to overlay some segment of my story on a moment in time reserved for other people to see Drew’s. But as journalists, our lives are deeply intertwined with the lives of others, and that’s worth acknowledging so the non-journalist side of us can contend with the experiences we have while we’re working.

Regina knew throughout Drew’s illness that she was bound to fall apart when he died. In the years since, she has struggled to keep the promises she made to him.

She promised him she wouldn’t relapse, but she did. She also promised she wouldn’t try to kill herself, but she did. After several alcohol-related arrests, she was incarcerated for six months and then released. A few months ago, she was arrested again for driving with a suspended license.

Last month, she called me from the jail and sounded better than she had in years. She said a part of her had wanted to be incarcerated because it gives her a sense of purpose — to help the young women at the jail try to turn their lives around. It also forces her to stay sober.

When her boyfriend, Sam, visited her recently she asked him to wear the locket with Drew’s picture in it that she normally wears. “All the girls wanted to see what he looked like,” Sam said.

On the phone, Regina uttered a phrase she must have said to me a hundred times over the past five years: “It’s just like Andrew always told me — you have to look for something positive out of everything negative.”

Andrew and Regina’s story turned out so differently from the triumphant one about facing death with optimism and humor that I thought I was filming. It wasn’t even a beautiful, inspired slipping away. Like reality, at the end the film is profoundly sad and very hard to watch.

But in spite of the inevitable outcome, Drew showed that it’s worth living life like he did for as long as you can — with stubborn, naïve optimism that the odds remain in your favor.