Nora Amrhein loves to sing.
Just walking around the house, she breaks into her favorite pop songs and country tunes, whatever catches her ear.
But perform in front of other people? Not a chance.
Never did 14-year-old Nora imagine she would one day write an original song, record herself singing it and give CDs to every pediatric cancer caregiver she knew at Spectrum Health Helen DeVos Children’s Hospital.
Leukemia brought many changes to Nora’s life—moments of pain and fear no child should ever have to experience.
But the journey brought something beautiful, too.
Nora discovered a gift for music and songwriting.
The first song she wrote helped to make sense of the whirlwind of change brought by her diagnosis, forging a bridge between then and now, home and hospital, fear and hope.
“It made all the good things come together in my life—my friends, my family and my pets,” she said. “It made me feel at home even when I was (in the hospital).”
Nora also developed a desire to share her songs to inspire other children as they face the challenges of cancer treatment.
“I want them to know that at some point, no matter what, you are going to feel safe and you’ll be OK at the end of it,” she said. “And you just have to keep fighting.”
The songs gave me comfort and joy and something to look forward to—just to spill my feelings on the page and to sing.
A petite young woman with intense brown eyes, Nora sat with her mom in her favorite restaurant, Nonna’s Trattoria, and talked about song writing and cancer treatments.
She is in the home stretch of treatments now, looking to receive her last dose of maintenance chemotherapy in January 2021.
She remembered the pain and confusion she felt two years ago when she learned she had leukemia.
In one day, her life changed dramatically.
Nora was 11 years old in September 2018, just starting sixth grade at Northern Trails 5-6 School in Ada, Michigan, when she showed signs of illness—fatigue, a flushed face, swollen lips.
Her mother, Natalie Amrhein, took her to the pediatrician’s office. When the blood test results came back, a doctor called to say Nora should go immediately to the emergency department at Helen DeVos Children’s Hospital.
After two days of tests and examinations, Nora’s parents met with Beth Kurt, MD, a pediatric oncologist and hematologist.
Nora had acute lymphoblastic leukemia, Dr. Kurt said. Given her age, she was considered high-risk and required a series of chemotherapy and steroid treatments that would last over two years.
Together, Dr. Kurt and Nora’s parents gave the news to Nora. After two days of worry, she felt relieved her condition was treatable.
“I didn’t want to have this,” she said. “But I was just glad it wasn’t worse.”
Even in those first frightening days, Natalie felt a surprising resolve that all would be well.
“I would not put this (experience) on any parent,” she said. “But there was something that was telling me she was going to be OK.”
The first round of chemotherapy began immediately.
For the next 14 days, Nora stayed in the hospital, separated from everything familiar—her home, her friends and her younger brother and sister, Noah and Sofia.
She missed her dog, Izzo, her rabbit, Cocoa. She missed riding Nehigh, her favorite horse at the riding stable. And she wondered if she would ever get to ride horses again.
In those first, uncertain days, she received a visit from music therapist Katie Rushlow. As the Gen. John and Maureen Nowak music therapist with the Edward and June Prein family pediatric music therapy program, Rushlow uses musical interventions to help children.
Learning that Nora loved music, Rushlow asked if she would like to sing together.
No thanks, Nora said.
“With singing, I always got nervous around other people,” she said.
Rushlow brought out a ukulele and started to teach Nora how to play it. As Nora played, Rushlow sang.
In the coming months, Nora spent many more long stays at the hospital, for chemotherapy or to treat complications that developed.
Rushlow’s visits became a high point. Nora soon became comfortable singing along with her. She enjoyed lessons in playing the keyboard, drums and guitar.
“We grew a kind of relationship that was really strong,” Nora said.
One day Rushlow suggested that Nora write her own song. They brainstormed ideas together.
Nora chose to write about her journey fighting leukemia.
First, Rushlow suggested she come up with words she most wanted to include in her song.
Nora responded: Faith. Courage. Hope.
“We talked about how I just wanted it all to be over,” Nora recalled. “And how this journey would make me stronger.”
Together they worked on the first lines.
She called the song, “Railroads,” representing her journey.
The beginning of the song evokes how Nora felt when she first learned she had leukemia and began treatment.
“I was feeling scared and unsafe,” Nora said. “I had a fear of needles before I went to the hospital, and I was freaking out.
“Once I knew the people around me, it changed the whole dynamic. I felt safer. I just learned that you have to get through it.”
When the song reaches the bridge, the tone becomes more upbeat, conveying a sense of hope. A feeling that “I can do this. This journey is going to go to a hopefully good place,” Nora said.
The result: “It is really, really an incredible song,” Rushlow said.
They recorded it together and created CDs for Nora to give to her medical team.
Watching Nora grow in confidence in her song-writing abilities filled Rushlow with pride. Although they worked together on the song, Nora increasingly took charge of the creative process, freely accepting and discarding suggestions as she wrote the lyrics.
That is one of the many benefits of music therapy.
In providing an avenue for self-expression, music therapy gives kids and teenagers a sense of control—amid circumstances where they often don’t have much control over what happens next, Rushlow said.
In their sessions together, Nora “can choose what kind of instrument she wants to play—the guitar, ukulele, piano or drums,” Rushlow said. “And even if she says, ‘I don’t want to do anything today, that’s OK, too.’
“It’s really been awesome working with her and seeing her grow. She is very mature, and an awesomely spirited young lady.”
A series of hurdles
Even as her musical abilities grew, Nora endured treatments and serious complications.
At one point, she developed an acute kidney injury from a chemotherapy drug. She spent time in the intensive care unit, on dialysis, as she recovered.
Another chemotherapy drug caused her triglycerides to skyrocket, which required her to take a new medication and swallow daily doses of fish oil.
“She took (the fish oil) like a champ,” Dr. Kurt said. “She would say, ‘It doesn’t taste good, but it’s not so bad.’”
About a year into treatment, Nora developed severe pain in her hip. Examination showed the steroids had damaged her hip joints.
“At some point, she is going to need a hip replacement,” Dr. Kurt said. “Obviously, we want to cure her leukemia. That’s first and foremost. It just makes me sad that she had these complications.”
Through all her treatments, Nora has impressed her medical team with her strength and positive attitude.
“From a very young age, she has demonstrated maturity and thoughtfulness,” Dr. Kurt said.
She noted that Nora, through online schooling, managed to skip a grade. While receiving chemotherapy, she completed her coursework for seventh and eighth grades.
“She is really a smart cookie,” Dr. Kurt said. “I think that says a lot about her perseverance and her dedication when she sets her mind to something. She’s all in.”
Two more songs
After recording “Railroads” with Rushlow and distributing CDs to her medical team, Nora began work on a new song, “A Winter in Michigan.”
And now she is writing her third song, “Free.”
Her dad marveled at how Nora’s songwriting and musical gifts blossomed even as she underwent treatment.
“I think it’s great,” he said. “Katie (Rushlow) did an amazing job and has been super supportive.”
Although Nora hopes to keep music always in her life, her career goals lie in another direction: She hopes to be a veterinarian someday.
“I love animals,” she said. “They are my favorite thing in the world. My pets have really comforted me whenever I needed them.”
Because of the risks to her fragile hip joints, she can no longer ride horses. But she hopes someday, after hip replacement surgery, she will be able to resume horseback riding.
As she went through treatments and hospitalizations, Nora relied on support from her family, friends and her faith.
“Our faith, hope and trust in God has really helped us,” she said.
Fortunately, she does not have to spend a lot of time in the hospital these days. She takes her daily maintenance chemo in pill form at home.
She goes to the Ethie Haworth Children’s Cancer Center at Helen DeVos Children’s Hospital once a month for an infusion.
Because of the COVID-19 pandemic, she didn’t get to see Rushlow for music therapy during many of her monthly visits to the hospital this year.
But Nora still treasures the way music has helped her through these past two years.
“The songs gave me comfort and joy and something to look forward to—just to spill my feelings on the page and to sing,” she said. “It was a way to get rid of the bad thoughts and to inspire other people, too.”
Dr. Kurt looks forward to watching Nora put cancer treatments behind her and move on to new chapters in her life.
“I’m expecting big things from her, just because I know what she is capable of,” she said. “I think she is going to make her stamp on this world.”