Live, From the Children’s Ward

NEW YORK — Gabriela S. Ortiz sterilized her instruments and went up to the fourth-floor cancer unit, where a patient was waiting. The instruments were a piano keyboard, a guitar, a xylophone and a drum. Ortiz is a music therapist in the child life department of Mount Sinai Hospital in Manhattan, and on this dark, damp afternoon in March, she was helping the patient write a song.

A colleague accompanied Ortiz, carrying a camera. She was going to help the girl make a music video. They knocked and went in. The patient, Elene Javrishvili, sat up in bed in a gray hoodie.

Elene had come from her home in the former Soviet republic of Georgia to visit her mother in New York around Christmas and fallen suddenly ill, with a high fever and stomachaches and mysterious bruises and infections. She tumbled through a series of holes and soon found herself in a hospital, diagnosed at age 11 with acute myeloid leukemia.

She had been at Mount Sinai for 46 days. She was glad to see her visitors.

Ortiz sat at the keyboard and played the chords that went with Elene’s words: “Once there was a girl with bright green eyes/the blondest hair you’ve ever seen.” Elene’s own bright eyes were brown; her short light-brown hair was patchy from chemo. The video specialist, Nicole Wood, asked her who would play the girl in the video. “We could use a wig and green contacts,” Elene said. “I have a wig — I’m planning to get three or four of them.”

Ortiz and Elene worked on the song, the minor-key melody rising and falling, Elene tapping on the drum and conducting with her fingers.

Ortiz said Elene needed more description of the girl. “She loves to play guitar,” said Elene (pronounced ELL-enn-eh), who speaks fluent English and holds strong opinions about pretty much everything. “We need one more line,” Ortiz said. “Well, I hate sports, so let’s do that,” Elene said. They sang together: “She loves to play the guitar and singing too/Hates all the sports, working out too.”

“That’s good!” Elene said, laughing and looking a little surprised. “How does it feel to sing?” Ortiz asked. “Weird,” Elene said.

The field of psychosocial care called child life tries to take the weirdness and — to borrow a word from the child-life lexicon — “normalize” it all, even the shiny, scary machinery and the endless procession of prodding strangers. Child life developed in the 1960s to help young patients and their families deal with the stress of illness and institutionalization, in part by giving children power in a setting where they feel as if they have no control.

Most children’s hospitals have child life departments. The one at Kravis Children’s Hospital at Mount Sinai, as the 70-bed hospital on Fifth Avenue overlooking Central Park is formally known, has a full-time staff of 20 (plus two therapy dogs) and offers art, creative writing and meditation, among other therapies.

Much of the department’s work is aimed at normalizing life for patients who cannot leave their rooms. To this end, it operates a television station, KidZoneTV, that broadcasts live interactive shows three times a day. (It is an ambitious undertaking but not unique, even in the city — the bigger NewYork-Presbyterian Morgan Stanley Children’s Hospital also has a TV station.)

The studio phone rang. “Hi, caller, what’s your name?” Ayala asked. “Michelle,” a small voice said. “I got the whole board!”

The producer pressed a sound-effect button. “Ding!” went a bell. He pressed another. “Yay!” yelled a bunch of children’s voices.

Many of the child life staffers are regulars on KidZone TV. Ortiz, 33, hosts a weekly variety show called “The Buzz With Gaby.” For one recent episode, she and a chief pediatric resident, David Laufgraben, ate gross mystery snacks. KidZone dispatched a mobile crew to the hospital’s outpatient pediatric cancer clinic next door. The kids there provided color commentary.

A 12-year-old leukemia patient, Isabella Gavilanes, offered a pro tip: “I recommend that you guys have a bag next to you in case you have to — " she mimed vomiting. Ortiz and Laufgraben put on their blindfolds and bit into their barbecue-flavored mealworms.

“Ew!” Isabella said.

“It’s so crunchy!” Ortiz said.

“Like a chip,” Laufgraben said.

A 9-year-old boy named Nana Owusu cracked up. “This is the funniest KidZone TV show we’ve ever seen.”

For patients well enough to visit it, the KidZone TV studio can be a place of transformation. One Tuesday afternoon, a 9-year-old named Dynasty Arenas-Concepcion lay listlessly in bed on the third floor, antibiotics dripping into her arm to treat her perforated appendix.

Ten minutes later she was down in the studio, co-hosting a live show called “Art for the Soul.” She helped the art therapist who hosts the show explain the day’s assignment and demonstrated it by drawing flowers and a tree with a bright green trunk. “If you want to do something else you can,” Dynasty said. “It’s your choice. Like if you want to do a pool in the backyard of a house.”

A patient wrote in to ask for a red butterfly. “Yes and then we can add a red flower, too,” Dynasty said. Another patient texted a photo of her drawing of a house with a car and a pool and boat and a blue flower. “Gorgeous,” Dynasty said and kissed her fingers like a chef.

In an age when anything a child could possibly want to watch is available with a click on the tablet or smartphone that is probably sitting on his bedside table, KidZone TV can seem quaint. But for patients on isolation, it can provide their only chance to interact with other kids, even remotely.

The station can be a blessing for parents, too. In the fourth-floor intensive care unit one day, Kelly Giordano played Broadway Bingo as her 4-year-old son, Jack, lay beside her. Jack was born without a small intestine, endured many dozens of surgeries and infections, and last year, after his second bowel transplant, suffered a stroke that robbed him of his ability to speak, stand or eat on his own. The Broadway Bingo guest stars — actresses from “Phantom of the Opera” — called out the names of shows.

Giordano dialed the number on the screen. “It’s Team Jack — we got a bingo!” The actresses gave a big cheer. Jack’s face brightened very slowly until he broke into a big, room-illuminating smile. Then he started to cry.

“It’s really helpful for us,” Giordano said. “Otherwise we’re just looking at four walls every day.”

Helping sick children have fun is a demanding job. “Sometimes we have very difficult runs where we have a death or two a week,” said Diane Rode, the longtime head of Mount Sinai’s child life and creative arts therapy department. “The potential for absorption of secondary trauma is high.”

The child life workers meet regularly for “reflective practice,” where they process the emotions that come up when, for example, you forge a connection to a patient who does not recover.

“The first patient I ever worked with, I lost,” said Mathea Jacobs, KidZone TV’s station manager. “That was a very quick lesson. I just reflected on what I could do for him when he was here.

“It’s really helps that we meet, and Nicole and I will talk and we’ll cry in my office.” Though child life specialists speak to one another in jargon — there’s lots of talk of “medical play” and “co-treatments” combining various “interventions” — their mission boils down to this: Figure out what might make a kid feel better about her situation, and make it happen.

One afternoon in the spring, Wood, 28, who does much of the puppet work on KidZone TV (she was a voice-over actor in a prior career) wheeled a portable theater upstairs for her first session with an 8-year-old asthma patient, Chante Smith. Chante was sitting up in bed with tearstained cheeks: her mother had just left.

“I made a stage just for you!” Wood said. Chante lingered in her sadness for a few minutes, then emerged. She showed Wood her Wonder Woman doll, whom she called her superhero. Wood made a rubber-glove hand puppet. She clamped a little red curtain to Chante’s bed table, set up her camera, and hit record.

Chante’s superhero and Wood’s puppet improvised a little play. After a few minutes, Chante announced, “The superhero’s leaving.” The superhero flew behind the curtain and out of the frame.

“I wonder where she goes when she flies,” Wood’s puppet said.

“It’s a secret,” Chante said.

“I wonder how she feels when she flies,” the puppet said. “Do you know?”

Chante danced Wonder Woman’s feet on the table. “She feels very happy.”

Among patients who make videos, such fantasies of agency and escape are popular. One clip made with the help of the studio’s green screen shows a bald girl soaring through the sky, flanked by bald eagles and Canada geese.

Some patients use their video time to vent, and that’s fine, too. “I want to talk to you about kidney failure,” says the star of “Girls on Dialysis: A Patient Produced Video.” “I want to tell you how it feels to get a needle twice a week, because it hurts and it’s really uncomfortable, and that’s all I have to say.”

Outside Elene Javrishvili’s window in Central Park, the seasons changed. Nannies pushed children on the swings and a middle-school cross-country team jogged up the little hill.

Inside, Elene remained hostage to the rhythms of illness and treatment: the rounds of chemo, bouts of nausea and blocks of blank time. She was in remission, but she contracted the notorious bacterial infection Clostridium difficile, which is so contagious that Ortiz was not allowed to bring her instruments into Elene’s room — “the spores can get into electronic equipment,” Ortiz explained.

Still, Elene kept working on her song. She would record her vocals and email them to Ortiz, who would add accompaniment in the studio and email it back. “It’s been an interesting clinical-technological challenge,” Wood said.

One afternoon at the end of April, Ortiz and Wood went upstairs to meet with Elene about ideas for the video. Her room was dark. “Come on in,” Elene’s mother called out. “She has to take her chemo anyway.”

Elene sat up groggily. Chemo had taken much of her hair and sucked the color from her skin — she looked a little as if she had been roused from hibernation. But soon she was her spirited self, showing Wood videos that inspired her: “Photograph” by Ed Sheeran, “Little Things” by a 12-year-old YouTube star named Annie LeBlanc. She seemed less like a patient than an artist working with her producers.

Elene had also decided to make her song an anthem of self-acceptance. As the cancer and the treatment changed her outward appearance, Ortiz said, “there was a way that she was sort of projecting her own feelings and ideas and she was confronting some of her fears.”

“There’s a lot of kids who are trying to not be themselves,” Elene said later. “I don’t like that.”

In May, Elene finished her song, “Be Yourself.” She sang it lying in bed, too wiped out from yet another round of chemo to sit up. She was still on isolation because of her infection, so Ortiz recorded her from the hallway, her gear set up by the hand-sanitizer station and the drawers of disposable gowns and masks.

“Go be yourself/ Do what makes you happy,” Elene sang, her scratchy voice surging with emotion. “Be whatever you/ Be whatever you want/ Yeah this is me!”

The video, though, never got done: Elene was making such good progress that she was discharged ahead of schedule for the next step of her medical journey: a bone-marrow transplant at Memorial Sloan Kettering Cancer Center, not far from Mount Sinai.

A few days before the transplant, Elene, mostly bald but animated as ever, sat in her mother’s temporary apartment near the new hospital, talking about her plans for the video, combining old family photos and “behind the scenes” footage Wood shot, and using editing techniques she picked up along the way.

“I can see the whole thing in my head,” Elene said. “Definitely.”