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An Attitude of Perseverance and Positivity

How a diagnosis didn't stop this Gaither student

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An Attitude of Perseverance and Positivity

Photo by Rachel Slay

Photo by Rachel Slay

Photo by Rachel Slay

Rachel Slay, Staff Writer

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Andrea Velazquez-Ayala is an individual who has practiced tenacious strength in the face of difficult circumstances. Ayala has expressed great optimism as she’s overcome obstacles with health, and their effect on her life.

Ayala is currently a junior at Gaither High School, where she is a proud member of the Marching Cowboys and plays oboe in the symphonic band. When Ayala began her time in high school, she was met with the same challenges any freshman might expect: new extracurriculars, new course loads, new schedules. About halfway into her sophomore year, however, she was met with the biggest, most unexpected, challenge of them all.

The journey leading up to Ayala’s disease was a long one. In middle school, she started experiencing joint pain, extreme exhaustion and severe migraines, causing nausea and partial blindness. As she entered high school and joined the marching band, her exhaustion only increased.

“I could sleep for nine hours at night, wake up, go to school, come home and sleep from three to nine, wake up and eat something, and sleep until six the next morning,” said Ayala.

In November of 2017, Ayala was sent to a pediatric rheumatologist in St. Pete after her primary care physician examined her blood work. It was there that she was told she had markers of lupus. They accredited the joint pains she’d had to her participation in marching band. In the months after this possible diagnosis, things only escalated.

Ayala had a tonsillectomy the following December that was a major contributing factor to the development of her disease. Unable to take medications like morphine and other opioids, Ayala was taking high doses of ibuprofen after this surgery. The mass intake of this drug, which is filtered through the kidneys, paired with her extensive sun exposure was a lethal combination.

“My exhaustion didn’t improve, my joints started getting worse. I would get this pain all over my body, it was this burning sensation anytime pressure touched it. That happened after I’d been in the sun, and with marching practice, that was all the time,” said Ayala. She’d later find out during a series of ultrasounds that she had arthritis in all her joints.

She developed painful sores on the roof of her mouth that kept her from eating. Once she discovered the swollen lymph node in her neck, it was necessary to get a second opinion. Over a span of four months, she went from having a suspicion of something being wrong to a full understanding of the severity of her situation.

“By March of 2018, I had full-blown stage four Lupus Nephritis, which is lupus of the kidneys,” said Ayala.

Ayala had a total of eight operations before and after she learned about her autoimmune condition. She spent a week at UF Health Shands Cancer Hospital, where she received six operations on top of blood work every day.

During one of her lengthy sessions in the operating room, Ayala had three biopsies in her mouth: a section of skin from the roof of her mouth was removed, a section of her gum containing a sore was removed, and they took some of her salivary glands.

“I was amused by the whole thing… and I was like can I see what you’re taking out? Can I see my salivary glands? And they were cool about it… they showed me everything,” said Ayala.

Ayala also went under general anesthesia and had the swollen lymph node removed from her neck, a kidney biopsy and a bone marrow biopsy, where they drilled into her pelvic bone.

“Me, being a science geek, I thought this was all really cool,” said Ayala.

Ayala’s optimistic attitude was difficult to maintain when she returned to school. She struggled to get through a full day without passing out, despite her weekly steroid infusions. She was battling the symptoms of lupus with medications while simultaneously experiencing side effects from those same medications.

“I remember there was a point where I gave up. I quit taking my medication for like three days. I quit taking my oral steroids, so my hormone levels would drop and my body would go into a state of shock. But I had given up, I was like, ‘I don’t want to do this anymore. I can’t,’” said Ayala.

It was through the words of Ayala’s best friend’s mom that she was able to push herself forward. She was reminded of how far she’d come during this time, and of all the people that were on her side. During her time in St. Petersburg, for instance, one of Ayala’s friends went to the beach and brought her sea shells, since she couldn’t tag along. Ayala also remembered the strength of her mother, who had battled thyroid cancer.

“I thought, ‘What would my mom do if I gave up and didn’t fight as hard as she did when she was sick and fought for me?’”

As summer band camp approached, it became evident to Ayala that she would not be able to participate in marching band the way she was used to. She wasn’t sure how she was going to pull it off, but she knew that quitting was not an option.

“I remember the first time I ever performed. I call it the ‘Stephen Slay Strut’ because he would walk with this bold confidence, and the first time I ever performed and played I had that same confidence. I was walking like that: with pride. I knew I didn’t want to let that go,” said Ayala.

Ayala had a conversation with her band director, where they came to the consensus that she’d be an honorary “band mom”. This way, she could still attend competitions and play in the stands during football games, but not be at risk for sun exposure and other health concerns.

“It’s unfortunate because I really do love performing, but I got two years of doing something I love and now I’m on the other side of it. Band moms are just as important as the performers themselves,” said Ayala.

She’s welcomed the responsibilities the moms hold, such as setting up pre-competition meals, getting the necessary uniform pieces together, double checking everyone has their proper medication and making sure that there are no peanuts on the “no-peanuts” bus.

“It’s a different experience, but it is still an enriching experience,” said Ayala.

Ayala has continued to attend school on a modified schedule and participate in band with her head held high. Ayala’s maturity towards her circumstance and her determination to make the best of her situation speaks volumes about the fighter that she is.

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An Attitude of Perseverance and Positivity