Princeton High School Senior Spotlight

Lymphangioma did not stop Drew Davis from reaching for success

Drew Davis is an average 18-year-old girl and senior at Princeton High School.

She enjoys gardening and plants, working as a waitress at Princeton’s Pizza Barn, participating in the Princeton High School National Honor Society, volunteering, and is excited to graduate and start college in the fall.

But from outside appearances, Drew stands out in a crowd due to a medical condition she was born with known as lymphangioma, or cystic hygroma, that has caused physical changes to her face and jaw.

The condition is a malfunction within the body’s lymphatic system that affects Drew’s face, mouth, tongue, chest, and multiple other areas of her body. But the area that has had the most impact is her face with large amounts of swelling on its bottom half.

“It’s very complex. This (condition) in general is uncommon, but not that rare. For most babies, it’s a small growth that can be removed and then they’ll look almost completely normal. But mine is in the connective tissue and in the bone, so that’s why they couldn’t really cut it off,” Drew said. “It’s in everything, like it’s behind my eyes, my nose, my airway, it’s on the back of my legs, in my ears — I have hearing loss.”

According to the Cleveland Clinic website, lymphangiomas are noncancerous fluid-filled cysts that form in children, often in the head and neck. In Drew’s case, there are hundreds of those cysts in her face and throughout her body.

Since the condition is part of the lymphatic system, it also affects Drew’s immune system.

“I’m immune-compromised. When I get sick, my whole face swells and makes it hard to breathe and talk,” Drew said.

Due to this condition and where it has presented itself, Drew has had to wear a trach tube in her throat her entire life, since she was five days old, to ensure she is able to breathe and get enough air to survive.

The Princeton Union-Eagle did a story about Drew in August 2011 one month before she started kindergarten.

In that article, Drew’s mother, Sara Davis, alongside Drew’s father, Duane Davis, had hoped Drew would be able to have the trach tube removed, which has turned out to have not been possible thus far. The swelling she experiences when she is sick is part of why it cannot be removed.

Before she entered kindergarten, Drew had gone through at least 50 medical procedures related to her condition, including jaw reconstruction surgery, surgeries on her tongue to stop bleeding issues, multiple blood transfusions, surgeries to remove some of the masses, and more.

Since then, Drew has had at least an additional 50 procedures under anesthesia. Sara Davis estimates that the number of procedures is easily over 100, but she has lost count over the years.

Discovering diagnosis and medical care

When Sara was 22 weeks pregnant with Drew, she went to a regular ultrasound where the first warning flags were raised, according to the Union-Eagle article.

Sara then had an MRI done the month before Drew’s birth to help identify what was wrong with her unborn daughter. That was when the lymphangioma was diagnosed.

“We didn’t know if she would live,” Sara said to the Union-Eagle, “and we were worried what she would look like.”

“They had set us up for the worst,” Duane Davis said to the Union-Eagle.

Drew was born one month early and was admitted to the neonatal intensive care unit (NICU) where she lived for the first month of her life and received live-saving medical care.

When Drew came home from the hospital, she was accompanied by a team of in-home nurses that helped her parents care for her 24-hours a day.

“She almost died several times (due to Drew’s breathing stopping),” Sara said to the Union-Eagle.

“She’s probably one of the worst cases in the country, probably in the world,” Sara said to the Union-Times.

Over the years and as Drew grew older, it became easier and easier to manage her medical condition. It got to the point where the family was able to dismiss the nurses all together when Drew reached sixth grade. After that, Drew and her family were able to care for all of her daily medical needs on their own.

“The last month (of that year) she went to school by herself because we figured she would be able to take care of her trach by herself and she did,” Sara said. “We had nurses in our house up until she was 10 or 11 years old.”

“That was such a big change for me, like I had someone constantly behind me holding my stuff, and suddenly they were gone. I was so proud to not have someone there,” Drew said.

When Drew was in first grade, her family started taking regular trips to New York City where Drew could be seen and treated by a specialist doctor.

The visits to the doctor were advised by their primary doctor after they discovered Drew had been using her epiglottis to talk rather than her vocal cords.

The family ended up making 23 trips in total while Drew was in elementary school between the ages of 6 and 12.

“It was a difficult time for our family, but it was worth it. (The doctor) changed our lives. It was the right decision,” Sara said.

Due to those frequent trips across the country and many trips to hospitals, Drew often missed school, especially through elementary and intermediate school.

“She missed a significant amount of school in those younger years,” Sara said. “She missed a lot, but all I can say is that Drew is very naturally smart.”

“I don’t feel like I missed out on all that much,” Drew said.

Since Drew was born in 2005, the treatments for her condition have improved immensely. When she was younger, there were no options for oral medications, and many of the treatments were experimental.

“So kids born with it now will start with oral medications. She’s on one of those medications now,” Sara said. “Where it has helped the most is where she doesn’t have scar tissue.”

Through all of her medical experiences, the Davis family survived with the help from Drew’s primary pediatrician Jessica Larson.

“She is still our hero,” Sara said.

Growing up

Despite all of her medical struggles, Drew was determined to live a normal life.

Her medical condition never slowed her down, even through all of the trips to hospitals and days missing school.

Drew was a very active child, often beating the boys her age in gym class and she even was a gymnast for many years.

“Gymnastics was a big part of my life up until junior year. I quit because I got hurt in my sophomore season and lost the passion for it,” Drew said. “I used to be very athletic, I was top of the class and would beat the boys over and over. I ran a fast mile.”

“For where we started, not knowing if she was going to live, to her being a gymnast is pretty crazy,” Sara said.

In recent years, Drew has had to cut back on her activity level due to issues with her lung capacity and struggling to breathe.

And, while she may look different compared to the other kids her age, Drew said she was never really bullied for her differences.

“I never really had any bullies at school for being different. I definitely got stared at and laughed at, but not bullied,” Drew said. “I learned very early on to tolerate it because I know I look different and I’ve made peace with that.”

While she wasn’t bullied in school, Drew did face a lot of mental health struggles growing up, especially during middle school and early high school.

“I struggled so much in high school. Mental health was a very big part of it for me with self-perception and my depression,” Drew said. “That had such a big impact on me and it diminished the light of high school a lot. … I feel like I’ve lived longer than I actually have, but I really haven’t.”

“It’s like her dad says, ‘You’ve been through more than most adults have in their lifetime,’ and it’s true,” Sara said. “There’s been challenges, but she’s done great.”

One of the things Drew has really enjoyed about her high school experience has been outside of school at her job waitressing at Pizza Barn.

While it was a difficult transition for her to enter into the workforce as a young teenager, Drew grew to love her job and the people she now works with.

“I love going to work because the people there are very nice and I have lots of friends in my co-workers,” Drew said.

“It was very hard for her to get a job at first,” Sara said. “She would come home mad because she would answer the phone and people couldn’t understand her. It was hard to throw her out there like that, but we knew we had to keep pushing her to be normal and be herself, and it’s worked.”

As Drew moves into a future outside of her hometown, she encourages anyone who is curious about her medical condition to ask her about it rather than stare at her.

“I love when people have the courage to ask rather than being shy about it. People don’t like to approach me because I’m intimidating or different, which I understand. I remind myself that everyone is living life for the first time. But I’m just a normal kid,” Drew said. “When people ask, I tell them as simply as I can. I’m very open about it.”

Drew’s life today

Looking toward her future, Drew is excited to pursue a degree in nursing through the College of St. Benedict in St. Joseph.

“I love science, biology, and anatomy, it’s my favorite, so I’m looking forward to that in nursing school. I have experience in the healthcare field growing up in it, and I like helping people,” Drew said. “I want to be a traveling nurse. Traveling has always been a dream, and I’d get to do it while getting paid.”

College is not as nerve-wracking for Drew as some may expect. Drew believes that it will be easier for her compared to her time in high school.

“I think it’ll be easier. I think I’ll face similar issues, but everyone feels that way in college,” Drew said. “If I present myself the way I typically do, as a confident and fun, carefree individual, they’ll see past it.”

She is also looking forward to the freedom college life and moving away from home will bring her.

“I’m most excited to go live on my own after college and decorate my own apartment. I’m excited to start my own life,” Drew said.

After she earns her undergraduate degree, Drew also hopes to get a master’s degree.

Her interest in the medical field also impacted her learning through high school with some of her favorite classes being science related with her favorite teacher, Lisa Esterberg.

In fact, some of Drew’s favorite memories in high school were the interactions she had with her teachers.

“I liked the teachers a lot. I think Princeton has great teachers. They genuinely care about what they do and they wanted to get to know me. All the teachers are very passionate,” Drew said. “A really good memory is just talking to them.”

In reflecting on her high school experience, Drew advises anyone going into high school to say “yes” more often.

“Say ‘yes’ because what’s the worst that can happen?” Drew said.

Drew Davis will be one of the approximately 250 Princeton High School students walking across the stage during the graduation ceremony on Friday, May 31.

Reach Chloe Smith at chloe.smith@apgecm.com