“I still remember that morning. It was June 15, two days after my 13th birthday. I had been suffering from headaches and vomiting on and off for several weeks. The radiology office was able to fit me in early in the morning, right before school. I was told that the MRI would take a short time and that I would make it to school on time. But as time ticked on, I got more and more anxious about being marked late for school. When the exam was done, we rushed to school. Late.
Two hours later, my dad was in the school office and he told me that we were getting into a cab and heading to the hospital. He told me that I had a “lump” in my brain and that the doctors do not want me to suffer another headache or vomiting episode. I met Dr. Souweidane, along with his incredible team, and he made me feel comfortable and reassured. I was checked into the ICU that afternoon.
Waiting for surgery in the ICU felt like forever; I tried not to let fear take over. In the middle of it all, an incredible social worker showed up to help take my mind off the surgery with crafts. She explained the upcoming procedures in a way I could understand without fancy medical terminology. My dad also surrounded me with every candy available from the vending machine. Crafts and candy, an amazing view of the Brooklyn Bridge, and I told myself that despite what’s to come, I was “living my best life” at that moment.
When I woke up after surgery, everything felt hazy. My head hurt, a lot. I experienced extreme double vision. I remember feeling a sense of relief that it was over, but I also knew that the recovery that came after had just begun.
After a week in the pediatric ICU, surrounded by the nicest, most caring medical and nursing staff, I was discharged. I was fortunate to have access to the best medical team led by Dr. Souweidane, and was lovingly surrounded by supportive family and friends. And yet at that time, at 13 years old, I still felt like no one truly understood the fear, confusion, and uncertainty that I was facing. I did not truly know what to expect to feel before and after the surgery and rehabilitation. It was like stepping into a completely new life. My body was definitely not the same, and every small task felt like climbing up a mountain. It was exhausting. Plus, there was the emotional weight underlying all of it. It truly felt like my life had paused when everyone else’s was continuing. My friends were preparing for their summer while I was in the ICU with a drip line, preparing for rehabilitation to address what were yet unknown deficits from a major surgery.
When I look back, I realize that having someone my age to talk to, who also had direct experience in what I was experiencing, would have made a difference in how I felt. They would just be someone like me, who understood what it was like to face something so big at such a young age. Talking to them would have made me feel seen in a way that no adult could have done, no matter how much they tried. They would understand the discomfort of losing normalcy, like missing school or friends, and they would know the emotional highs and lows that come with such a diagnosis.
That kind of connection would be a lifeline. It would not just be for medical advice or tips on coping; it would be about having someone who “gets” what it means to be a young person with a brain tumor. The Patient Companionship Program seeks to create a peer-to-peer bond that will be impactful for patients’ emotional well-being. It also allows young survivors like me to be there for current patients, in a way only we can.”
