Emma’s strength through many treatments at Beacon Children’s Hospital lights up the world

This month, Beacon Children’s Hospital will celebrate five years of delivering expert care, close to home in its current location. So we are shining a spotlight on some of our inspiring patients, like Emma Nies.

Story by Melinda McNamara

A fifth birthday is a big deal for most kids. For Emma Nies, it was a chance to show off her new LOL shoes with her pals at Beacon Children’s Hospital.

Emma was checking in with her oncology team as part of her monthly visits with her pediatric oncologist, Angela Herman, MD. Her March birthday coincided with another milestone – one year in remission from acute lymphoblastic leukemia.

Emma is one of thousands of young patients who have received specialized care at Beacon Children’s Hospital since it moved into its new home in 2017. The hospital serves as a regional destination for critically ill and injured children in counties stretching from northern Indiana to southwestern Michigan.

“We were fortunate to have Beacon Children’s Hospital close to home and not have to go to Chicago or Indianapolis,” said Emma’s mom, Abby Nies. “I can’t imagine how we could have gotten through this without family support nearby.”

When Emma rang the bell after her last chemo treatment in 2021, she ended 841 days of active treatment. That added up to more than half her life. Emma had lived through 30 lumbar punctures, more than 20 blood and platelet transfusions, 12 different types of chemo, two bone marrow aspirations, more than 60 sleepovers at the hospital, hundreds of lab draws, scans and X-rays, countless side effects, and three more birthdays.

This tiny, mighty tot started a new chapter in her life with a family trip to Florida in July 2021. They all had a lot to celebrate – no more chemo, port removed, incision healed, blood count on the rise and a good check-up with the oncologist.

Greater appreciation for life becomes new normal

Emma’s story is one of hope, resilience and healing. She is in pre-kindergarten now, at the school right down the road from her Granger home. For the first time in her young life, Emma is around other kids four days a week. It’s exhausting for her, but that doesn’t dampen her enthusiasm.

Family life has a new rhythm for everyone at Emma’s house. Instead of keeping a bag packed for emergency trips to the hospital, there’s talk of vacations and family visits.

Emma no longer has her personal mac-n-cheese dealer, disguised as Josh, the night nurse, who delivered her favorite food to her hospital room. She heads to the kitchen pantry for a snack now, instead of standing guard outside Room 4 on the lookout for volunteers with the mid-morning snack cart.

Play dates with her best friend and sleepovers at her grandmother’s house have replaced lengthy stays at the hospital and countless visits with her oncology team. Afternoon cheering sessions at her big brother Caleb’s soccer games and play time with her little sister have become the new normal for Emma.

Abby was six months pregnant on that day in November 2018 when she took Emma to the pediatrician to check on a rash that wouldn’t clear up. By nightfall, Abby and Emma had checked into Beacon Children’s Hospital and started an unimaginable, exhausting roller coaster ride through cancer treatment.

Mother and daughter were at the hospital for another week of inpatient treatment when Abby went into labor. She walked down the hallway from the children’s wing to the maternity unit at Memorial Hospital where her younger daughter, Alivia, was born in 2019.

“I was the talk of the clinic,” Abby said. “Alivia spent the first year of her life at the hospital.”

Now Alivia is 3. She no longer has ready-made companions to walk with her up and down the hospital hallways during Emma’s inpatient stays. Instead, Abby rekindled a favorite mother-daughter activity and took Alivia to her first Story Time at the library in March 2022.

“The last time I took Emma was the day before she was diagnosed,” Abby said. It was a bittersweet moment for Abby when she walked by the stacks of books with Alivia. So much had happened in three years.

An underlying current of anxiety still runs swiftly through the household, particularly when a headache takes hold, pain shoots up a leg or a dark bruise appears. A genetic mutation places Emma at high risk for relapse.

“There’s a fear with every lab draw and waiting for those numbers to come back,” Abby said. “We try to live life in the moment – a day at a time.”

Side effects from chemo are also a part of life for Emma. Joint pain sidelined Emma during her first year on the soccer field, but she’s ready to give the 2022 season a try. High temperatures stress Emma’s adrenal system, making summertime activities more difficult.

Yet every day is a reason to celebrate for Emma and her family. No one takes the everyday moments of life for granted.

This 5-year-old is ready to find out where her life’s journey will take her next. Good thing Emma has her birthday shoes to light up her world.