Alicia's Story: You gotta laugh every day

Alicia's Story: You gotta laugh every day
It’s hard to capture an infectious giggle in words, but that’s exactly what you get when you speak to Alicia. Alicia is now 20 years old. She was diagnosed with a brain tumour at just six months old, so having a brain tumour is her normal. Despite her diagnosis, three brain surgeries, loss of vision, and multiple medications, she laughs every day and is determined to inspire people.
 
Alicia’s Mom advocated for her daughter when she was just a baby. A very sick baby who was always thirsty and had a weird shaped head. Her Mom also noticed that Alicia couldn’t see from one eye. Multiple doctor’s visits later, Alicia received an MRI. Later that day, they were flown by helicopter from their home in Sudbury to SickKids in Toronto. At eight months old, Alicia had her first brain surgery. Her diagnosis, Craniopharyngioma. A childhood tumour found in the pituitary area of the brain.
 
“To most people, being called a “survivor” is a huge compliment but for me living with a brain tumour is my normal.” Alicia explains. 
 
It was only when Alicia had her third brain surgery at age fifteen, that she really understood the intensity of such a surgery. A keen student, she had arranged for the surgery to take place during March break. She went back to school on the Tuesday after March break and had a literary test the next day. “I didn’t pass,” she laughed. “I was only off by a couple points, so I begged for leniency. They wondered why I was back to school so fast. Looking back, I should have taken a longer break to recover.” This surgery helped relieve the daily headaches that Alicia had been suffering through, an outcome that was hoped for, but not guaranteed. 
 
That wasn’t even Alicia’s biggest surgery. When she was just a toddler, the surgery resecting the tumour produced a scar that stretched from ear to ear.
 
The effects of Alicia’s tumour are long lasting. “The tumour caused vision loss to my left eye but after surgery I lost all my vision in it. Now I only have tunnel vision in my right eye. The tumour damaged my pituitary gland causing many hormonal issues. They had to remove the entire pituitary gland because of the damage the tumour caused. I had to take nightly injections for growth hormone deficiency. I have to closely watch my fluid intake because of Diabetes Insipidus. When I get sick, it is a struggle because of adrenal insufficiencies. Since I don’t have a pituitary gland, I now take many medications to replace the hormones it used to make. I have yearly checkups with all my doctors. Since my last surgery, my tumour has remained stable with minimal growth.”
 
The tumour has also had a positive impact on Alicia’s life. “It has made me cherish life due to the circumstances that I have been given. I’ve helped people, I’ve inspired people. They think I’m inspirational, but this is just my daily life.”
 
Now, Alicia is in college studying to be an Early Childhood Educator. She hopes that she will be able to advocate for children with special needs, especially those with visual impairments. “I was told I wouldn’t graduate high school. I’ve proved a lot of people wrong. My grades skyrocketed in grades 9-12. I made the dean's list, and I’m maintaining a 4.0 at college. People have predicted my future, but I’ve risen above my life goals. Now I want to share this with others, so I’ve created an Instagram account to share my story and I have become a public speaker, sharing my story and encouraging others. I was a drama major in highschool and loved being on stage. Now, instead of telling my character’s story, I get to tell my story.”
 
Alicia at the Brain Tumour Walk 2019Alicia attended the Brain Tumour Walk for the first time in 2019 and had so much fun meeting others living with a brain tumour that she can’t wait to sign up to do it again next year with Team Alicia. 
 
Alicia also attends the local brain tumour support group. “It’s so nice to be able to connect with others. It’s helped me a lot” she giggles, “I call it my monthly therapy time.”

“You gotta laugh every day.” she said. “Find the funny. Find the bright side. My brain tumour may have taken part of my vision but it will never take away my passion to make change in this world”.  

Thank you Alicia for sharing your story and your giggle! 

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Story posted October 2019

 


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