By Carolyn Kimmel
Few things can make a person feel as out of control as a cancer diagnosis.
Aaliyah Newswanger decided to take control of one thing she could - her hair.
The Lititz teen has always loved long hair - twisting it into a bun, pulling it back into a ponytail, letting it fall loosely across her shoulders. Just before she found out she had Hodgkin lymphoma early last year, Aaliyah delighted in choosing to cut it into a bob for a new look.
Although she knew chemotherapy would claim her hair while it rescued her body, she was not prepared for the day it began falling out - in clumps.
“My hair was one of my biggest confidence points in myself, and it was heartbreaking for me when I lost it. It was like losing a part of me,” Aaliyah said, her large brown eyes pooling tears at the memory.
“I never really thought I was pretty, but seeing myself without hair for the first time made me see myself so much worse,” she wrote in a piece about her ordeal. “So many thoughts ran through my head. One of the most common ones was, “Who would ever love someone who looks like me?”
Her nurse at Penn State Health Children’s Hospital told her that some people take matters into their own hands by shaving their heads. The thought terrified her, Aaliyah said.
But so did the sight of those clumps.
“Mentally, it was like this is the one thing I can choose to do - because pretty much nothing else was in my control,” she said.
A bittersweet moment
Mothers and daughters share many things from the moment they lock eyes on one another after birth, and Jessica Newswanger has treasured each one.
“Shaving my daughter’s hair and seeing how it was breaking her heart was one of the hardest things I have ever had to do,” she said. “When your kid gets sick and you can’t fix it, it’s bad enough, and then this… we just cuddled in her bed and cried.”
Jessica wrote down her own thoughts, which mirrored the angst of her daughter’s journal. “As a grown woman, losing my hair would be so emotionally devastating, let alone losing it as a teen girl, when appearance is such an important part of how you see yourself.”
Sitting in the bathroom of her hospital room, Aaliyah couldn’t look in the mirror as the razor hummed to life. Which was louder - the incessant buzzing or the sound of her crying? She didn’t know.
“I thought I would look gross without hair,” she said, but when she got up the courage to peek, she was surprised. “It really depends on the shape of your head, which you don’t know until you don’t have hair. I found out mine was better than I expected.”
The family used a lot of humor to get through those first days of Aaliyah’s new look. Her dad, Shawn, has a bald spot, so they called each other “bald spot buddies.”
Initially, Aaliyah thought she would wear a wig, but while shopping for one at a salon, a stylist said something neither mother nor daughter have forgotten.
“She said she believes that every woman, at some point in their life, should shave their head. It would make us all realize that how we look isn’t important. Hair isn’t important,” Jessica said. “What matters is who you are on the inside.”
Aaliyah decided against a wig. “There were many people who made me feel better,” she wrote. “I got lots of comments like, ‘Wow, you look so pretty!’ and ‘Having no hair really looks good on you!’ and my personal favorite, ‘You rock looking like that!’”
An unexpected journey
The cancer diagnosis blindsided this healthy young girl who loves to ride horseback and dreams of being a vet one day.
Lingering night sweats and enlarged lymph nodes took Aaliyah to her family doctor in February 2021. Bloodwork showed an elevated white blood cell count, and a biopsy yielded devastating news.
The diagnosis of stage 4B Hodgkin lymphoma came in early March. The cancer had spread outside the lymph nodes. Next came a seemingly impossible choice – a less aggressive treatment plan of chemotherapy and radiation that could lead to other cancers or a more aggressive chemotherapy that usually results in infertility but could avoid radiation.
Aaliyah chose the former and rallied through five cycles of chemotherapy, three weeks each. An infection in her chemo port landed her in the hospital for two weeks, and the port had to be removed and put in on the other side of her chest.
“There were times I thought I couldn’t take it anymore, but I never did give up totally,” she said. “I kept telling myself, ‘You have to get through this. You have so much to look forward to.’”
In the end, the chemotherapy worked so well that no radiation was necessary. In June 2021, Aaliyah was cancer-free.
A lasting lesson
Fighting cancer, it turns out, forged a bond far closer and strong than this mother-daughter duo ever expected.
“We saw sides of each other we’d never seen,” Aaliyah said.
“I got to talk her off the ledge a few times, and she did the same for me,” her mother said.
As the months went by, Aaliyah realized her self-confidence was slowly returning. When she entered 10th grade last fall, and classmates saw her for the first time with no hair, she held her head up high.
And she realized it didn’t matter whether there was hair on it or not.
“I learned that being bald and having cancer doesn’t define me,” she wrote. “I’m my own person and I can choose how I want to live my life. I won’t let my sickness define me. That’s the message I want to send to everyone out there who has any kind of sickness. Your sickness doesn’t define you. Neither does your appearance. Love yourself.”
To read more stories about our pediatric cancer survivors.
Aaliyah Newswanger rallied through five cycles of chemotherapy until June of 2021when she was declared cancer-free. More photos >>