Raising Awareness: Bayleigh Phillips shares her story

September 25, 2020 chris
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By Katie Bohannon, News Editor

Bayleigh Phillips never meets a stranger.

A natural social butterfly with a jovial sense of humor, Phillips is a dedicated student – even if socializing with friends was her favorite subject. She enjoys cooking, grilling and golfing, and always finds herself enthusiastic for adventures and road trips. But while all these things encompass Phillips as a person, one incident in her childhood shifted the course of her life, and inspired the 23 year old she is today. 

When Phillips (pictured above) was nine years old, she began noticing a difference in her vision – she was seeing double. Being so young, the abnormality both frightened and unphased Phillips, who discovered clever methods to fix her sight issue. When she looked at the board in school, she would simply turn her head sideways to blur two words into one, or when she read a book she tilted her head up and cut her eyes down to return her eyesight to normal. Phillips’ piano teacher even noticed the peculiarity as she tilted her head to read the music.

The night before she was diagnosed, she mentioned the problem to her mother. When she said she could see two mommies and two daddies, concern settled in.

Phillips’ father reached out to his friend Dr. Tony Catanzaro with Gadsden Eye Associates, who urged the family to investigate Phillips’ condition. Phillips visited her pediatrician, Dr. Billie Snell, before scheduling an appointment at Gadsden Eye Associates and Advanced Imagining. Together, Snell and Catanzaro came to the same conclusion: Phillips had a brain tumor.

“Thinking back on it now, I didn’t even know what a brain tumor was,” said Phillips. “I don’t think I fully knew what cancer was. I think I just knew that something was wrong and that it couldn’t be treated by a regular doctor, and that scared me. I did cry for a few minutes, but I pulled myself together and said I’ve got this – we’ve got to do this. I’m going to be a big girl about it.”

The same day Snell confirmed that Phillips had a brain tumor, she and her family had one hour to pack their bags and head to Children’s Hospital of Alabama in Birmingham. Though she would grow to have a wonderful relationship with Children’s, Phillips remembered her first impression of the hospital as eerie and strange, a situation she never experienced before.

“When we got there, it was late in the afternoon and most all the clinics were closed,” said Phillips. “We were in the one clinic that was open. I just remember it being dark. Almost all the lights were off except for the ones that were on in our clinic, and I remember it being so quiet and so awkward and just different. I wasn’t used to anything like that.”

Phillips was diagnosed with a hypothalamic pilocytic astrocytoma, a brain tumor that develops in the hypothalamus, the area of the brain responsible for hormone function, body temperature regulation, sleep and appetite. Due to the location of Phillips’ tumor, which was connected to so many crucial sections of her brain, the tumor was inoperable. Doctors were concerned that should they operate, Phillips might experience memory loss, vision loss or other repercussions.

She began chemotherapy treatments straightaway.

From the ages of nine to 15, Phillips received 150 weeks of chemotherapy and five and a half weeks of radiation treatments. Throughout the years, Phillips’ tumor would shrink or grow, and she received regular scans to track its progress. She started with scans every three months, then advanced to scans every six months. During her last six-month scan before graduating to yearly scans, Phillips’ tumor grew. Though Phillips endured a continuous back-and-forth treatment plan depending on the size of her tumor for countless months, when she was 15, her medical team informed her that her tumor was no longer growing – it was stable.

Phillips’ doctors told her that though the possibility of her tumor growing when she was older existed, they were pleased with its stability and happy with her health for the time being. Since 2013, Phillips has been free of all treatments, and her tumor remains dormant.

“[The tumor] just hangs out,” said Phillips. “I always joke and tell people I shouldn’t have named it, or else it wouldn’t have stuck around. I don’t even remember what I named it [as a child], I just decided to name it and my nurse practitioner goes, ‘Well don’t name it! If you name it, it’s going to want to stay!’”

Despite what Phillips experienced during childhood, her lighthearted nature and endearing sense of humor withstand intact. She considers her years at Children’s rich with influence, and filled with people who impacted her life for the better.

Phillips reflected on the people who made her journey extraordinary and the unforgettable moments with individuals she feels grateful to know. She remembered learning about friends of her father’s, whose daughter was diagnosed with cancer, and visiting her in the hospital. Angry and frustrated at the world because of her lot, Megan laid in her hospital bed, but from the first moment Phillips walked into Megan’s room, their connection was instantaneous.

“I walk in and she goes, ‘You,’” said Phillips. “She points at me, and I’m like ‘Me?’ She said, ‘Yeah. I’m about to start charging people to walk in and out of this room. Go get the tape from the nurse’s desk and you’re hanging the dollar bills on the wall.’ I just knew from that point we were going to be best friends.”

From shopping at the mall with their heads painted to silly string fights, Megan’s vibrant personality influenced Phillip’s life through countless memories. When Megan grew extremely ill before she passed away, Phillips and her family went to visit her. They hugged her and asked her if they could get her anything. Phillips noted that often when individuals make promises to someone who is sick or ill, though the offer is never empty, the expectation of fulfillment is usually quite low. Megan had another idea in mind.

After listing a variety of things they could bring her (including food from El Tapitio), Megan requested her favorite pastime – pranks. One of the pranks the Phillips brought Megan was a roll of toilet paper glued down on all sides. Laughingly, Megan nudged Phillips to switch the rolls in the bathroom. After Phillips consented, Megan took the prank a step further and told Phillips to take all of the normal toilet paper out of the bathroom, leaving only the unrollable paper. When Phillips pleaded against it, Megan said, “Just go take the toilet paper out of the bathroom. I can’t get up and do it.”

“I get a phone call from Megan’s aunt a few days later,” said Phillips. “She chewed me up one end and down the other because she got stuck in the bathroom with no toilet paper and had to pull the nurse’s chord to get toilet paper! It’s people like [Megan] who I met that make the journey worthwhile.”

In fact, it is Phillips’ relationship with a staff member at Children’s that inspired her to pursue a specific career path for her own future. A recent graduate of Jacksonville State University with a degree in child development, Phillips aspires to become a child life specialist and walk in the footsteps of the individuals whose care comforted her so deeply.

Pediatric healthcare professionals who work with children and families to explain medical procedures, illnesses and disabilities to ease the stress children might experience in difficult and unfamiliar situations, child life specialists provide the perfect balance of knowledge and consolation to alleviate worry or fear.

“It’s so competitive and it’s a growing field,” said Phillips. “When I was younger, child life wasn’t a huge thing. Now that I’m older, it’s like all of a sudden I knew 10 older people at Jacksonville that wanted to be child life specialists – and that’s at a school that doesn’t even offer a program.”

Though Jacksonville State does not offer a child life specialist program, the university did test drive a few classes related to the field and Phillips actually got to attend a course taught by one of her own child life specialists from Children’s. Phillips’ next step is to find a practicum or volunteer work, then transfer into an internship before she secures a position at a hospital.

“I think about being younger and being in the hospital, and I think about what an impact a child life specialist had on me in the sense of taking some of that scariness away,” said Phillips. “When I had to have my port put in, they brought in a doll that had a port on it and showed it to me. They let me touch and feel [the doll] and explained what it was used for on a level I could understand at nine years old.”

Phillips recalls her interaction with child life specialists who provided arts and crafts and entertainment for children in the hospital. If she felt well, she could leave her room and play games or puzzles with other children in the child life room down the hall. If she didn’t feel well, the child life specialists brought the fun to her, visiting her room with an assortment of activities.

But while the child life specialists at Children’s affected Phillips’ experience during the hospital, it was their relationship with her brother that moved Phillips the most. Phillips’ brother Garrett is only two years younger than her, while her sister Lola was only 10 days old when Phillips was diagnosed.

“That was really hard for my brother feeling like all the attention was drawn away from him,” said Phillips. “For a child life specialist to look at him and pay attention to only him, and take him to play basketball at the Children’s Harbor and do arts and crafts with him, or to just sit there and talk – that was huge for him. I want to be able to do that for families like my child life specialist did for me.”

Thinking back on her nine year old self, Phillips considered what she might say to that young girl who was unaware of all the challenges her future held.

“I would say get ready, and be grateful for the journey you’re about to have,” said Phillips. “Just know that what you’re about to go through is going to make you a better person…and hold your friends, family and faith very close to your heart.”

Two aspects of Phillips’ life carried her throughout her journey, uplifting her and encouraging her to press forward: faith and family. Growing up Catholic, Phillips noted that while God was always a presence in her life, He never became the center of her life until her diagnosis. Through prayer and the support of her family, she overcame each obstacle she faced. From laughter to tears, through the hardships and the joy, Phillips’ family stuck by her side – always ready to fight her battles with her and watch her emerge victorious.

Phillips offered a few words of reassurance to individuals in similar situations as her own.

“Pray and don’t be scared to reach out and find someone that can be with you,” said Phillips. “Find a friend, maybe someone else who is on treatment. A lot of the people that I was on treatment with are half the reason I am where I am today. It’s other people you can laugh about it with, it’s other people you can cry about it with. I

“ go to Camp Smile-A-Mile and one of the things about that was like being around other people who have something similar to me was our very own sense of normalcy. In a world where we kind of stand out, it’s nice to have that normalcy. Don’t lose faith – find a friend, find somebody who is going through something like you are and pray.”

Phillips’ passion to make a difference is undeniable, and her devotion to service emerges as an inspiration. She represents a perseverant nature and a compassionate heart who understands the reality of what so many children face each day. Phillips encouraged others to become aware of childhood cancer and to consider donating or volunteering to show their support.

 “I pray that this article helps people become aware and open their hearts,” said Phillips. “You don’t know what the little things mean to people who are in the hospital…to kids who are in the hospital.”