A Baltimore nurse comforts dying children — while fighting to stay alive for her sons

The minute Erin Batton Bull got 9-year-old Carson settled into his math homework, her phone began to buzz.

“Gilchrist, this is Erin,” she said, resting a hand on Carson’s shoulder as 7-year-old Avery zipped by on a hoverboard, spinning his arms like a helicopter.

Standing in her sunny Glen Arm kitchen, Bull, a pediatric hospice nurse, explained into the phone how her employer, Gilchrist Kids, cares for dying children and their families.

Unlike adult patients, young people are able to continue to receive lifesaving therapies while on hospice, Bull explained, stirring spaghetti into a pot of boiling water. Sometimes children get better and graduate from hospice care.

Steam from the pasta pot billowed up behind Bull as she detailed the intricacies of Gilchrist’s program. Avery, still perched on the hoverboard, crunched a piece of uncooked spaghetti, giggling. Carson carefully drew hands on a series of clocks, marking the hours.

For more than a dozen years, Bull, 43, a registered nurse, has guided families through the fragile terrain where life meets death. She has held the hands of hundreds of children and teens, answering their questions with compassion and honesty. She has held space for their families’ grief and shared in their joys.

Lately Bull has been thinking about her own mortality. It’s been nearly two years since she was diagnosed with Stage 4 metastatic breast cancer. Until this spring, oncologists have been able to keep her tumors in check, but her most recent scans show some are beginning to grow again.

“My oncologist said the name of the game is to keep living,” Bull said. “The longer you keep living, the more treatments become available.”

What Bull wants is to have more moments like this. To be able to make her sons spaghetti and cheer them on at soccer and watch them grow into young men. To care for patients and their families, helping them feel heard and supported.

In her work as in her family life, Bull seeks peace amid uncertainty. She provides quiet empathy for parents as they contemplate the unimaginable loss of a child. And in gentle, age-appropriate words, she seeks to prepare her children for the possibility that her time with them is limited.

“Every day that I’m here, I’m grateful,” Bull said. “I begged for this option.”

‘The Blessing’

It was July 2024 when Bull arrived home woozy and exhausted from a family trip to South Carolina. Was she coming down with something, or just worn out from chasing two little boys around the beach? Maybe a shower would perk her up, she thought.

Then in the shower, Bull felt the lump in her right breast. She hurried to the emergency room at Greater Baltimore Medical Center — the hospital where she was born and had given birth to her boys.

Bull’s parents and her husband, from whom she is now separated, sat with her as doctors explained the results of the CT scans. Fast-growing tumors had spread throughout her body, and one was blocking the bile duct of her liver, causing jaundice. If doctors couldn’t get her liver functioning again, she would die, Bull recalled.

“My dad called me crying, and when my dad cries, I know it’s not good,” said Bull’s younger sister, Holly Murphy.

Surgeons implanted a stent in Bull’s liver, and her symptoms began to improve. After four days and a flurry of biopsies and other procedures, Bull headed home, uncertain of her prognosis.

She sat for days, shades drawn, barely responding to texts and calls from worried friends. Neighbors, old friends and parents from the boys’ school left meals on the front porch.

Finally, around the time Bull had her first appointment with a Johns Hopkins Hospital oncologist, she wrote back to Shannon Smith, the worship pastor of ChurchONE, the nondenominational North Baltimore congregation to which Bull belongs.

Smith had offered to play hymns for Bull and her family. But Bull asked if she would be willing to play for a larger group.

A few days later, about two dozen friends and family members gathered around the fire pit in Bull’s backyard. Women she had met in kindergarten at Warren Elementary more than three decades ago. Classmates from Dulaney High School. Parents of her sons’ classmates at St. John the Evangelist Catholic School in Hydes.

“Worship fills the gap between our pain and our faith,” Smith said. “When you get people to come and sing together, you’re all singing to the same beat. Your breaths start to align. It changes things, physically and spiritually.”

Bull passed around copies of the lyrics to 15 of her favorite hymns, and Smith strummed the guitar and sang as the others joined in.

“It gives me chills to think about,” recalled Paige Winter, one of Bull’s friends. “We all stood up and were holding hands. It was the most beautiful night.”

The final hymn was Bull’s favorite, “The Blessing.”

“May His presence go before you, and behind you, and beside you,” the group sang by firelight. “All around you, and within you, he is with you. He is with you.”

Listening deeply

The eldest of three, Bull showed a knack for caring for others since childhood.

“She’s always been my second mom,” said Murphy, who is seven years younger. “She even tries to mom our mom.”

Bull grew up in Jacksonville in northern Baltimore County and graduated from Dulaney High School and Penn State. After receiving her nursing degree from Johns Hopkins, she moved to San Diego, where she cared for medically fragile babies in a neonatal intensive care unit.

Bull soon became convinced that more families of dying children deserved hospice services.

After moving back to the Baltimore area in 2013, Bull approached the leadership of Gilchrist and asked for a job caring for the most ill children. It was a pivotal era in the field of pediatric hospice.

Historically, parents had been reluctant to enroll their children in hospice because it meant that they would forgo chemotherapy and other types of care, and withdraw from studies of experimental medications.

But the passage of the 2010 Affordable Care Act changed that. Pediatric patients could now continue with curative treatments while benefitting from hospice services.

As Gilchrist Kids has grown from a few patients to enrolling 40 to 50 young people at any given time, Bull has served as a public face for the program, speaking on panels and giving interviews. She has conducted initial interviews with many of the 500 families who have had a child at Gilchrist, listening to their needs and connecting them with services.

“She deeply listens,” said Kyra Georgas, a Gilchrist Kids child life specialist. “Especially with our population, we can’t always fix the problem. But she is able to meet families where they are.”

‘She gets it’

Sitting on a park bench at a West Towson playground last week, a stethoscope looped around her neck, Bull leaned over to take the hand of 2-year-old Dash Daichman.

“I’m sorry you’ve had a rough couple days,” Bull said, massaging the boy’s palm and peering into his big brown eyes as he nestled in the arms of his mother, Michelle Daichman.

Planting kisses on her son’s soft dark curls, Daichman told Bull that Dash had stopped breathing three times the previous day.

Daichman, a former professional figure skater and avid runner, and her husband Michael, a nursing home administrator, adopted Dash shortly after he was born in 2023.

“He was meant to be our kid,” Daichman said. “When the adoption agency sent us the file, my husband and I looked at his picture and knew he was our son.”

A bout of severe RSV landed Dash on a ventilator in the hospital when he was around 6 months old. As Dash recovered, his parents noticed that he had regressed on several milestones. “He seemed like he was looking through you,” Daichman said.

Doctors ran a battery of tests and determined that Dash had a genetic neurodegenerative condition so rare that it does not have a name. The Daichmans enrolled Dash in Gilchrist because doctors thought he had 6 months to a year to live.

But Dash has surpassed those expectations.

A few months shy of his third birthday, Dash has a bright smile and loves to eat, drink from a sippy cup and cuddle, but cannot sit up unsupported, walk or speak.

“He communicates,” Michelle Daichman said. “He’s very chatty, but not in a typical word kind of way.”

Dash’s most alarming symptom is that he stops breathing multiple times per day. Wherever he and his mother are — a park, the library, a coffee shop — she lays him down and blows “rescue breaths” into his mouth.

“There is no minute of our days when my husband and I are not living in fight-or-flight mode,” Daichman said. “They always say a parent’s job is to keep your kid alive. We literally keep him alive every day.”

Daichman and Dash meet with Bull each week at a coffee shop or playground. Bull navigates the bureaucracy of the medical system for the Daichmans, advocating for their wishes.

“Our mentality throughout this whole journey is that Dash needs to live life still. He’s not going to sit in a hospital. He’s not going to take medications that will knock him out,” Daichman said. “Erin has been incredibly supportive. She gets it.”

The hardest part

Her long brown hair tucked under a baseball cap, Bull perched on a hill above an athletic field on a recent Monday, watching Carson trying out for a travel soccer team.

Nearby, Avery and another boy took turns pulling each other down the grassy embankment.

“Be careful, Avery, he’s smaller than you,” Bull called.

It had been a rough week, amid a rough few months. In December, Bull and her husband separated. Then in February, Liz Bauer, a close friend and fellow mother of two boys, died of breast cancer.

“She was the person who when I was having a really bad day, I could reach out to her,” Bull said. “She was the only person who understood what I was going through.”

Since 2024, oncologists had been able to manage Bull’s tumors with hormone-suppressing drugs and targeted gene therapies, but a recent scan showed growth. Bull’s oncologist recommended a new drug, but her insurance was refusing to pay for it, a decision she and her providers are appealing.

While Bull doesn’t disclose her diagnosis to her patients and their families, it has brought her a deeper level of empathy, she said.

“When they’re telling me their story, I feel it in my soul,” she said. “They give me inspiration because I understand what they’re going through.”

Bull tries to discuss her disease with the boys in age-appropriate terms.

“They know I have cancer, and they know it’s never going to go away,” Bull said. “We try not to focus on it all the time, but I don’t want them to forget it because I don’t want them to be blindsided.”

For now, Bull tries to make the most of each day, pouring love into her boys, bringing comfort to her patients and leaning on her family, friends and church community for support.

“I have strong faith. I know I have tons of friends and family who would keep my memory alive with the boys,” she said. “But I don’t want to leave them. That’s the absolute hardest part of it.”