Callie

From a young age, I knew myself as the “sick kid” of the family. I thought I was a normal kid who loved pink, dancing with my friends, and would sometimes throw up. I remember prepping for my play dates, but being too sick to go due to a pounding headache.

It was the summer of 2017 when my optometrist saw pressure on my optic nerve during a routine exam. But little did I know, this was only the beginning of my story.  My mom received a referral from my ophthalmologist to get an MRI. I wasn’t expecting anything to come back negatively. On August 23, 2017, I saw my mom cry right in front of me for the first time. The MRI showed a tumor inside my brain, and I was diagnosed with obstructive hydrocephalus. At the time, I was too young to comprehend what a brain tumor was, and everything was happening so quickly. I remember getting escorted to the hospital via ambulance and the EMTs laying me down on the stretcher. We were told all of the ventricles in my brain were filled with fluid. That night, nurses, technicians, and doctors were poking me, asking me questions, making sure I stayed still. A few days later, I had my first surgery for an endoscopic third ventriculostomy (ETV). The surgery went well, and I went back to school soon after. The only concern my parents had was the fact that my ventricles remained enlarged.

I continued my life as normally as I could until April 2021, when the ETV failed. My mom noticed I was not responding to her when she would talk to me, which was a concern. So, she took me to Seattle Children’s Hospital to get checked out. Within 12 hours, I had surgery to place an external ventricular drain (EVD), then back to the O.R. to put in a programmable ventriculoperitoneal (VP) shunt. It took a month to recover, and I missed the last full month of school. My mom had to take me to the Emergency Room (ER) 9 times in the 17 months that followed. I also had my first seizure.

On October 1, 2022, my mom was really worried because I wasn’t remembering things, so she took me to the ER again the next day. I was told the shunt had failed and I needed a shunt revision. The next day, the MRI showed that the ventricles were still filled with fluid. I was told I would now have to have an EVD for several weeks. The next four weeks were horrific. I was bedridden and could not move my head unless the nurse came in to turn off the drain. My mom stayed with me the whole time. Once the neurosurgeon determined that my ventricles were in compliance, I had the drain removed and a new VP shunt put in. I was able to go back to school 8 days later for half of the day.

In April of 2024, I had another seizure. This time it was at school during rehearsal for a musical. The director called 911, so a fire truck and ambulance came to the school. I fear that I will have a lot more seizures and surgeries to manage my hydrocephalus as I get older. But I continue to live my life to the fullest. After I graduate from high school, I am hoping to continue my dream of being an actress by attending college to get a Theater Arts Degree.

At the start of 2025, I had five seizures in four months. One happened during my graduation ceremony in front of everyone, and another while driving to school in my car. Thankfully, I was not hurt, but my car was a total loss.

This fall, my dream of going to a performing arts college is coming true. I will be getting a Bachelor of Fine Arts (BFS) degree while attending Cornish College of the Arts in September 2025. I will not let my disabilities stop me from pursuing my dream of becoming an actress!

---

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.