Neurofibromatosis: Chloe’s Story

When nurses and Child Life heard Chloe’s hospital stay would interfere with prom, they sprang into action.

Neurofibromatosis Chloes Story

Chloe celebrating her prom with Walter at Johns Hopkins All Children's

Published in Johns Hopkins All Children's Hospital - Latest News and Stories

Walter was a relatively new friend when Chloe took him to prom, but they had been inseparable for a week.

Tall, quiet and awkward, he looked good in his top hat and bow tie. He helped Chloe achieve a lifetime memory she thought she was going to miss.

Chloe, who was diagnosed with neurofibromatosis type 1 at age 2, was at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, when she realized the hospital stay would mean missing her senior prom at Alonso High School. Neurofibromatosis is a rare condition that can cause tumors in the brain, spinal cord and nerves.

Generally, the tumors are non-cancerous, but in some cases, treatments such as chemotherapy or surgery are needed to drain excess fluid.

Walter — an IV pole Chloe named because she took it everywhere during her hospital stay — would stand in as her prom date.

Starting as a Joke

Chloe initially was joking when she said she should have her prom at the hospital. She already had the dress after all.

But Johns Hopkins All Children’s nurses and Child Life staff seized on the idea.

“They got excited, and said, ‘We can make this happen,’” Chloe says.

“The nursing staff mentioned that she would be missing her prom,” says Kellie Carlson, a Child Life specialist. “After speaking with the patient and family I found out she would be missing her prom but already had her dress and was excited to wear it.”

Preparing for Prom

Carlson enlisted a Child Life tech, Madison Dilgard, to help. Dilgard made the top hat and bow tie for Walter. She made a poster with the Alonso prom theme, Phantom of the Opera, adding rose pedals “to make it feel more like her high-school prom.” She brought in a speaker to play music.

“Chloe LOVED the tie and top hat for Walter as well as the sign,” Dilgard says. “She seemed happy to have had anything from us and had a great personality and outlook through it all.”

On the day of the prom, Chloe’s dad brought in her dress. A family member helped with hair and makeup.

The Big Night

With everything just right and her date standing up straight, Chloe was ready. A cousin stopped by in her prom dress to join her. Some other patients on the unit came out of their rooms to see the disco ball and hear the music as Chloe walked to the end of the hallway and danced. She texted with classmates at Alonso’s prom.

“It was such a heartwarming story!” says Amy Lau, one of the nurses.

Chloe appreciates the effort involved in giving her a prom experience in less-than-ideal circumstances.

“It was a really special night,” she says. “I will remember it for many years.”

The Next Chapter

Chloe graduated from Alonso in the spring and started classes in August at Samford University near Birmingham, Alabama.

Her tumor is inoperable, but it is controlled with twice daily chemotherapy pills. She looks forward to her future.

Chloe is being treated by Stacie Stapleton, M.D., director of pediatric neuro-oncology at Johns Hopkins All Children’s. “Chloe is a strong and brave young woman with a lot of motivation to treat her tumor and attend college at the same time,” Stapleton says. “She is receiving chemotherapy based on the best current treatment strategies and her prognosis is good.”

“I am excited about college,” she says. “I’m grateful for the special support I got along the way.”