I’ve been avoiding this post. That usually means something’s trying to come out, and I should just settle down and let it come.
One night last week Ella had a difficult time going to sleep. It was different from her usual recalcitrance. She was crying, but not out of fear. She was in pain. Believe it or not, dads can also distinguish their children’s cries. I shouldn’t be suggestive; this is something I was surprised to learn about myself, that I could be so emotionally attune to a little person so as to read the subtleties of similar sounds.
Trish was already with Ella, but I went into the bedroom to see why my baby’s cries communicated urgency and pain, and fear.
Then I had a Tobin moment.
Ella’s knees were pulled up to her chest and she clutched her stomach. She wouldn’t stop until her mom picked her up and held her. She might have had gas, might have eaten something that didn’t agree with her, maybe she was feeling a pain for the first time and couldn’t understand it.
But in the first few moments, in the dark room, seeing a beautiful, energetic, sweet little child in pain, I was carried back to a hospital room in San Antonio in 1998. A 2-year-old little boy named Tobin was dying of cancer, a neuroblastoma. I was a medical reporter, and had found Tobin’s story while mining for a Christmas feature about kids in the hospital. I was freelancing, but I had a regular gig with the Express-News, and my editors quickly latched onto Tobin. I was to take as much time as I needed. They would play Tobin on 1A in several stories, first an introduction, then a New Year’s day story about the bone marrow transplant the boy would recieve from his brother on New Year’s Eve, then follow-ups about the boy’s progress.
I wrote three stories. In the first story I introduced South Texas to the family — Tobin, a sweet little boy with a big round face; his considerate, mannerly older brother, all of 8; their infant sister, curly blonde; the dad, big and sloppy, cheerfull, loud and always smiling; and the mother, small, quiet, attractive. The family had just moved to town from Southern California so the dad could take a new job. They had never even been to Texas, they hadn’t seen house they were moving into, they knew nobody. Somewhere along New Mexico Tobin started crying. Crying in pain. The next day he had a lump in his belly. They stopped at the first doctor they could find, out in the West Texas plains. The doctor urged them to hurry to San Antonio, where there was a children’s hospital and two cancer centers. Scared out of their wits, they drove non-stop, pushing the U-Haul to its limits, and arrived at the children’s hospital.
Tobin’s tumor was deadly, but only because of the very short window of time in which it appeared. Neuroblastoma is a common childhood cancer; children who are diagnosed with the mass recover quickly, sometimes almost spontaneously — if they’re younger or older than 2. For reasons the oncologist could not explain, the 2-year mark was an especially vulnerable time when the cancer wreaks havoc. Informational sidebars explained the diagnosis and treatment.
The second story was to run on New Year’s day, the least-read paper of the year. I didn’t know that at the time. I was a young reporter and excited to be given a shot at the front page. At 7 p.m. on Dec. 31 I went to the hospital, donned scrubs and went into the OR. Two physicians inserted large-gauge needles into Tobin’s brother’s hips, one on each side, and plunged out deep red marrow. One doctor stood on a stool for the extraction, to get better leverage because he was short. The collected stem cells went right into an IV drip threaded into Tobin’s arm.
Around 10 p.m. I went to the newspaper and wrote probably the worst story I’ve ever written. Over the past few weeks I had gotten to know this little boy and his family, the oncologist and several of the nurses. I stood at the bedside while his brother gave of himself — and had volunteered to do it — to save his brother’s life. Inside I was an emotional wreck, but I didn’t let that spill out onto newsprint, and it showed. The story came off as cliche, simple.
To be brief, Tobin’s body didn’t respond well to his brother’s marrow. He underwent radiation therapy, which is designed to take the entire body as close to death as possible in order to kill the raging cancer, a physiological battle of attrition. I visited Tobin often. On one of his worst days he lay on the bed in an isolation room, naked because his skin was so tender, literally burned a deep orange color, that to clothe the child would have been to inflict wounds across his body. He was heavily sedated. His mother was stoic. His father was in pieces.
Weeks later, I wrote a story about the boy’s funeral, about how the hospital staff and new-found friends, strangers even, had pitched in for a small casket and the use of a dimly lit room at the back of a church in a poor part of town. The father never started his job; the family was almost penniless. Afterward, everyone walked outside and released balloons. The piece ran on the local section front, under a story about the livestock show and a photo of a boy with a pig. A few weeks later I went to dinner with the family, now just four of them. The dad was a loud, emotional, trying to come to terms with his son’s death. We drank Scotch far past my limit, and I smoked his cigars, and I said good-bye to them; they were going back to California. I went home and threw up, purged myself of the experience.
Reporters have tremendous opportunities to view people’s lives as they’re being lived. It’s a voyeuristic profession, to be present during the most vulnerable moments of someone’s lives, then tell millions of people about it. I cherished the opportunity, and at the same time it’s a responsibility that weighed on me.
There are times when I can’t shake the visions that I wish I’d never seen Tobin splayed out in that hospital room. I wish I couldn’t remember how sweet he was when I fist met him, how he talked about “HoHo” at Christmas. I wish, sometimes, that I’d never met that family or written those stories. I wish I’d stayed away from the funeral. Tobin’s death brought to life in me emotions that sometimes still feel raw. I don’t remember ever hearing Tobin cry, but the sound is familiar.
Sometimes my wife doesn’t understand my reactions, doesn’t understand how these memories awaken deep empathies, or personal fears. I don’t, either. The lessons I learned from Tobin and his family I couldn’t have learned from anyone else. Amost 10 years later I’m still parsing the details. Some are just now making sense as my life evolves, and new dimensions are added, like having a daughter. Some lessons might remain mysteries, or never surface. But they’re there, whether I’m conscious of them or not. I’m getting better at recognizing them.