Patient, doctor connect through rare cancer diagnosis

In March of 2011, when she was 14 years old, Lily Newton was diagnosed with a rare cancer of the bone and soft tissue called Ewing sarcoma. Cancer changed Newton’s life in more ways than she could have imagined.

 Patient, doctor connect through rare cancer diagnosis click to enlarge Ian Davis, MD, PhD, and Lily Newton

January 16, 2019

Media Contact: Laura Oleniacz, 919-445-4219, laura_oleniacz@med.unc.edu

Cancer changed Lily Newton’s life in more ways than she could have imagined. In March of 2011, when she was 14 years old, Lily was diagnosed with a rare cancer of the bone and soft tissue called Ewing sarcoma.

Fears and questions quickly replaced thoughts of preseason lacrosse practice, catching up with friends at school, watching the science-fiction TV drama “Doctor Who,” and looking forward to starting her freshman year of high school. But looking back at her diagnosis and treatment, Newton says cancer has played a part in becoming who she is.

As she sat in a waiting room of the N.C. Cancer Hospital, in remission and waiting on a checkup, Newton expressed gratitude to her doctor, Ian Davis, MD, PhD, a physician-researcher at the UNC Lineberger Comprehensive Cancer Center who studies Ewing sarcoma. She shared her cancer diagnosis had a role in getting her to where she is now -- pursuing her dream of a career in film or television production. Now she’s 22 years old, and will be graduating in the spring from one of the top film schools in the country in New York City.

 “It is a horrible, horrible thing I got out of relatively unscathed,” she said. “But it led me down this path that I’m going down now.”

A life-changing phone call

At the time of her diagnosis, Newton was in eighth grade in Chapel Hill. She had a persistent pain in her hip. At the worst, her mom thought it might be an infection. But, while riding in the car with her mom, they got a call that turned her life upside down: a scan found a tumor in Lily’s pelvis.

Within five days of the call, Newton was meeting with Davis at the N.C. Cancer Hospital, the clinical home of UNC Lineberger.

“It was horrible because the first thing you think of is that you’re going to lose your child,” says Newton’s mom MaryKate Cunningham. “But we learned a lot, especially from Dr. Davis, about how much more likely it is for kids now to survive a cancer diagnosis than we would have imagined years ago, and we really liked him and trusted him.”

Cunningham said the fact that Davis both treats patients with Ewing sarcoma, and also researches the disease, gave them the confidence to put Lily in his hands.

“Not only was he a really nice doctor who we trusted, but his research specialty was exactly the type of cancer that Lily had,” MaryKate said.

Newton’s treatment started almost immediately with chemotherapy and radiation. Her prognosis was good. Still, Newton faced tough decisions, such as whether to have a surgery that could impact her ability to walk normally. It also was uncertain if she would face long-term treatment side effects.

Being at the hospital or in the clinic became part of Newton’s life. If she had a fever or developed an infection, she was hospitalized. Her family kept a bag packed in case her temperature spiked above 101 degrees. She became friends with the doctors and nurses. That made long hospital stays easier, but it was still hard.

“It was hard being ripped out of my normal life,” she says.

Davis says Newton was remarkable. She stayed enrolled in school throughout treatment, took a serious course load, including Latin and Advanced Placement classes, and kept a positive attitude.

It was about a year after diagnosis that a scan revealed that there was no evidence of disease. It was a definite high point, Cunningham says. Newton now returns to see Davis annually.

“I can’t imagine her having gotten care from anybody else,” Cunningham says, expressing her gratitude for Davis and the care team. 

Another high point came after Newton finished treatment. The Make-A-Wish Foundation arranged for her and her family to tour the movie set of “The Hobbit” in New Zealand. It was a dream come true. “It was such a fun set to be on because it was so massive and fantastical,” she says. “Everything about it seemed romantic to me.”

Newton says cancer has affected her in many ways, including helping shape her life direction. Her dad works in film and television production, and she knew she always wanted to do something creative with her life and career. But being on that movie set helped to cement her ambitions. She is now studying at New York University’s Tisch School of the Arts. She spends most of her time working on school projects, and when time permits, trying to find $1 pizza in New York City. She is looking forward to graduating in May.

Share This: