FINDING PURPOSE AFTER SURGERY
Isabelle shares her story.
I was 12 years old. It all started with headaches, which turned into ringing in my ear. Then I started getting clumsy with my right hand. Later I started to throw up and the ringing in my ear got worse. In the midst of the stress and readjustment to middle school during the covid pandemic, my parents thought my symptoms were connected to hormones from puberty. They were wrong.
When I started constantly complaining to my parents, we went to an ear doctor. He thought nothing was wrong. However, my father, being a radiologist, took an MRI scan of my brain and found a tumor the size of a nectarine in my cerebellum.
I remember that day. The MRI took too long and I was late for school. I didn’t notice how panicked my dad was because I was solely focused on getting to school. Shortly after I arrived at school and as I was settling into my class, the main office called my classroom and I was told that my dad was waiting for me downstairs. I was confused but I followed him regardless and we took a taxi going uptown. In the car ride to what was later revealed to be the hospital, I was told by my dad that I had “a bump” in my head and doctors were just going to examine it. At the hospital, I met Dr. Mark Souweidane, my literal savior. There, I was told I was going to have immediate surgery as soon as they could fit me into their schedule. I guess I didn’t really process the gravity of the situation I was in. The first thought that I had when I got to my hospital room was, “At least the room has a great view, and my dad is buying me all the snacks in the vending machine. I think I am living my best life!”
I did not feel afraid at all because somehow I knew that between Dr. Souweidane, his staff, and my family, I am in good hands. After the six-hour surgery, I opened my sticky eyes to a room full of doctors, nurses, and medical students. Dr. Souweidane asked me how I was feeling and I tried opening my mouth but it was like it was sealed shut and hadn’t been opened in decades. But I ultimately answered all their questions correctly, except the one about what day it was – I thought it was still the day before, when I went into surgery, but it was already 1AM the day after. The following days were a blur of throwing up, nurses hustling, parents adjusting my pillows, and relearning how to walk.
I was discharged from the hospital one week after my initial arrival and my road to recovery began. While I started PT in the hospital, the long and intense sessions of daily physical and occupational therapy started right after leaving the hospital. And believe it or not, I was actually cleared to go to sleepaway camp five weeks after surgery.
That was three years ago. I am now in the 11th grade. I play volleyball on my school team. I do mixed martial arts. I play the violin. I have become very interested in the brain and how it works. I was on the knives both literally and figuratively. Now, two years later, I realize how close I came. I was lucky to have access to treatment and care that in a different time or place would not have been the safety net into which I fell. I’m incredibly thankful to the team and wish to maximize my give back in any way possible.The recovery process was long and tedious, but Dr. Souweidane and this special community of doctors, nurses, and scientists have helped me reach the best version of myself.
Reflecting on those days in the hospital, I felt the need to do something to give back. I approached Dr. Souweidane and the Children’s Brain Tumor Project with my willingness to help in any way. We collectively agreed that there is an unmet need in the department of neurological surgery to help young patients who are preparing for surgery to connect with others who have already been through it. I volunteered to develop a “match” program, and the team now has several patients who are willing to talk to new patients and address their questions through the eyes of a peer who already experienced a similar surgery. The program website will be launched in late 2024.