Music helped St. Jude patient Emily weather cancer storm

On stage, when Emily and her sibling Callie perform — Callie on the guitar — the two harmonize seamlessly: “The wind howls/like a wolf in the night/take cover my love/the storm’s coming for us tonight.”  Even from the audience, their connection is unmistakable.

From the moment Emily was born in 1999, Callie claimed her as their own. “My baby,” the then 5-year-old told everyone. “I simply wouldn't let anyone else have her,” Callie said.

As kids, they shared a bedroom, their beds set up foot-to-foot. Emily was going to be an actor and Callie a rock star. They’d swipe their mom’s camcorder and spend hours making videos of each other performing. Not too long ago, Callie found those videos on an old laptop.

“Burn it,” Emily said. “It should never see the light of day.”

“I mean, your acting skills have truly improved since,” Callie said, laughing. “Dang, my singing has also.”

When Hurricane Katrina displaced their family from their Louisiana home, Callie and Emily held tight to each other. When Callie was critically ill in high school, Emily helped nurse them. Callie showed up for every one of Emily’s school performances.

Together, for as long as Emily can remember, the siblings have made music, singing original songs they write together as well as their favorites.

“Emily is my built-in best friend,” Callie said. They finish each other’s sentences and say the same thing at the same time. “Callie has been basically my twin, even though we're five years apart,” Emily said. “Callie is my No. 1 supporter.”

Together, they would face their greatest storm. Music would help get them through it.

‘Your sister has cancer’ 

Emily was 16 in 2016, a junior in high school, active in student council, theater and Key Club. She sang in the choir, played basketball and never missed a school dance.

“I truly just recognized high school for what it was, and that was a once-in-a-lifetime thing,” Emily said. She wanted to experience it all. But that spring, just walking from one class to the next exhausted the normally energetic teen. She fell asleep in class. Something was wrong. 

Results of a blood test showed Emily had acute promyelocytic leukemia (APL), a rare subtype of leukemia. She was referred to St. Jude Children’s Research Hospital® for treatment.

Callie was 21 at the time and had worked as a music minister for a hospice organization for two years. “I had become very well acquainted with the ins and outs of passing on to the next life and had become very comfortable with it,” Callie recalled. “But when you hear the words — ‘Your sister has cancer’ — there's nothing that ever prepares you for that moment.”

Emily’s family accompanied her to St. Jude to be with her during treatment. She wouldn’t weather this storm alone.

Making a choice 

At St. Jude, Emily’s pediatric oncologist explained her options: traditional treatment which involved high doses of chemotherapy that was known to cause side effects in the heart and likely would mean two years of treatment, or a protocol as part of a clinical trial that was testing a different combination of medicines over just eight or nine months with fewer rounds of chemotherapy.

At the time, the drugs in the new combination had been highly effective in a clinical trial of adults with APL but hadn’t been widely used to treat children. As part of the clinical trial, Emily would be one of the first pediatric patients at St. Jude to be treated on the protocol.

If it worked, she would get back to her life sooner, graduate with her class and start college in the fall. Fewer rounds of chemotherapy could mean fewer side effects.

Emily chose the clinical trial. Her parents supported Emily’s decision. They signed the consent forms, and so did Emily. “It was what I wanted,” she said.

Emily told her doctor it was all right if it didn’t work for her. Whatever they learned from her could help someone else someday. 

‘Everything is gonna be OK’

Callie sat with Emily through chemotherapy and shaved their own head even before Emily lost all of her hair. Callie jokingly recalled: “The only thought going through my head was that I had to upstage you.”

But Callie understood how hard it was for Emily to lose her long hair.

“Callie was really there for me,” Emily said. “That means the world to me.”

After 29 days of treatment, Emily’s blood tests showed no evidence of cancer. But she still had months of treatment ahead of her. Through it all, Emily found comfort in music.

“Music has been my everything my whole life,” she said. “It’s always been something — when I’m feeling down — I can sing with my sibling, and it just gives me a feeling that everything is gonna be OK.”

At Tri Delta Place, a patient housing facility at St. Jude, Callie played for Emily. Other patients and their families would gather to listen and sing along.

“We had this beautiful communal, just catharsis after really difficult days,” Emily said. “As a community of patient families, we really, really stick together and try to take care of one another.”

‘Say it’s not the end’

For Callie, music was a comfort, too. Late one night at Tri Delta Place, about three months into Emily’s treatment, Emily tossed and turned, and Callie could hear their grandmother snoring and the whooshing of their mom’s sleep apnea device.

Callie picked up their guitar and took the elevator down from the third floor to the first, where the room designed for teenagers was deserted. 

Callie sat on a couch, clicked “record” on their cell phone, and began to play. “I kept playing this little melodic melody, and it was just so dramatic, and if anyone knows Emily, she was a very dramatic kid growing up,” Callie said.

“I don’t know what you are talking about,” Emily interjected. “No clue.”

“Emily was a drama queen,” Callie said. 

“I prefer ‘full of life’,” Emily said.

“Emily was full of life,” Callie said.

Callie played the melody over and over — “It felt like the soundtrack to our life at the time” — and then wrote the first lines of the song: Oh, can you feel/the storm’s blowing in/the seas are rising/the skies dividing/that’s how our story begins.

“It was just flowing out of my hand, out of the pen, onto the page, and there was no stopping after writing that first verse,” Callie said. 

Rain hits the ground/thunder rolls in/it’s cold, dark and lonely/is this the end, my friend/oh, say it’s not the end.

“I could feel that Emily was in a moment, that she was fighting for her life, but she still had so much to go in front of her that it was just like climbing up a mountain and you see the peak and you're like, ‘I'm never going to make it there,’” Callie said. The song wasn’t only about Emily but the other patients as well. 

The first time Callie played it for Emily, who was hurting, foggy from pain medication, she remembers the song enveloping her. “I think Callie did more than capture what I was feeling at the time,” Emily said. “Callie captured our whole life story up until that point.” She felt overwhelmingly grateful. In that moment, Emily realized, “I really was not alone in my journey.”

‘Power of two brains’ 

The first time the siblings sang the song together in public was in 2018 at an event to benefit St. Jude outside in Wyoming, their harmonies echoing off the base of the Teton Mountains. 

“It was really, really magical. It felt incredible,” Emily said. In unison, Emily and Callie said, “It still feels like that.”

After nine months at St. Jude, Emily finished treatment in December 2016 and felt healthy and strong. The treatment she received now is the standard treatment for APL at St. Jude with a survival rate of more than 90 percent. 

Emily and Callie never stopped making music together, not only performing but collaborating on original songs and experimenting with vocals. 

“I'm a bit demanding of Emily,” Callie said.

“I think you push me creatively,” Emily said. 

“When we write together, I look at her, and I'm like, ‘OK, now fill in the blank,’” Callie said. Emily finds the words for lyrics when Callie can’t — and vice versa — even now with Callie, who’s 30, living in Louisiana and Emily, 25, in Rhode Island.

“The songs that we write together are really cool because it's like one person writing with the power of two brains, and it feels cohesive,” Callie said. But it’s more than that, too. The time spent creating together deepens their connection.

“I have always been the biggest fan of who Emily is as a person, not just because of her heart, but because of the way that she acts that out in her everyday life,” Callie said. “She has a tendency to make everyone around her smile and laugh and enjoy life and think deeper and rise to the level that they should, you know, to be the person that they should be and want to be.”

Over the years, Emily and Callie have performed “The Storm” dozens of times, at St. Jude events and elsewhere. 

“I hope that when people hear and experience the song for the first time that they take pause to know that it is a very human thing to go through the storms in life. It is not just something that's experienced here at St. Jude,” Callie said. “It's something that we’ll experience again some time in our lives, and they understand that there is community in that.”

For Emily and Callie, the song is a reminder of the storm they weathered — and that they came through it. Together.

“We say in the song, ‘Take cover, my love. The storm's coming for us tonight,’ and we did,” Callie said. “We took cover in each other.”