My Story

The pain in my back was relentless. At first, my parents thought I might have strained it at my water polo practice, but after a few days of no relief, I ended up in the ER in the middle of the night. They gave me an X-ray, and sent me home with Miralax, telling my mom that my digestive tract was backed up. We did this a few times over the course of about 10 days, and every time they just sent me home with a stronger remedy. Then it happened…I fell. I was shopping with my mom at Target when I fell for no reason.My mom had a feeling there was something going on that was more than just digestive issues, and she decided to take me to a different hospital that’s just for kids, called UCSF Benioff in Oakland, CA. After examining me and giving me a few tests, they, too, tried to send me home, but my mom wouldn’t leave. And if you know anything about my mom, you should know she is like a force of nature. She wouldn’t budge.

By 1am I was in the MRI machine, but the pain was so excruciating that I wasn’t able to stay still. However, the radiologist saw something they didn’t like. I was sedated with medication that was put into my IV, and taken back to the MRI. By the next morning my whole world turned upside down. We were sitting at the neurosurgeon’s office and he told my parents that they had no idea what had shown up on the scan, but that cancer was likely. I didn’t even know what that meant. My parents told me I had a little spot in my back that they were going to remove.

That was Saturday. By that afternoon, my “spot” was putting so much pressure on my spinal cord that I went from walking normally to having to be pushed in a wheelchair. That’s when I thought, this is more than a spot. I had wonderful friends come to visit that weekend, and they even let my dog Charlie into the hospital so I could see her. By Tuesday, I was in the operating room for over 10 hours so the doctors could biopsy “ the spot” and get a diagnosis. Within a few days, and after another MRI, it was determined that I had a metastatic brain tumor called NGGCT, which is an abbreviation for non-germinomatous germ cell tumor. My parents were whisked away into a meeting with a ton of doctors so they could find out what was going to happen. All I knew was that I was scared, and I wasn’t going home anytime soon.

We moved from the ICU floor up to the oncology floor, and I remember seeing all of these kids without any hair on their heads. I still didn’t know I had cancer, or what that even meant, but it was only a matter of time until I asked my mom if that’s what I had. We were playing Monopoly, and she looked up and told me, yes, I had a little spot in my brain and one on my back, and it was called cancer. She told me that no one was going to leave my side the whole time and that whatever we needed to do to fix it, we would do it. I trusted her.

My treatment started immediately with chemotherapy. I had to stay in the hospital for close to a week every time I needed it, and every 21 days I would start a new round. That meant I got 14 days at home in between each treatment if I was lucky and didn’t have a fever or something else. The chemo made me lose my hair, which was probably the worst part of the whole thing. I was nauseous and tired a whole lot, but at least I could be home with my family, and of course my dog Charlie.

I was ecstatic when that period was over, until I was told I needed brain surgery. BRAIN SURGERY? No way was I going to let someone into my skull… but once again the tiger in my mom took over. She took me all over the state and had my MRI images sent all over the country to find the best neurosurgeon we could find. Lo and behold, he was nearby at UCSF. I was beyond scared. I knew I was going to have to let a nurse roll me away and take me into the operating room, but not without a fight. And boy did I fight. I kicked and screamed and cried until finally I think they gave me something to relax. All I know is I woke up 12 hours later and the first thing I asked was, “Does my brain work the same?” Everyone started crying because yes, it did indeed still work.

After recovering for a couple weeks, I had one more chapter to finish my treatment plan. My parents researched tirelessly to find the best center to get my radiation treatment. They found out that Mass General Hospital in Boston was one of the best places in the country with the most experience for children with brain tumors. They were the first to have a therapy called proton radiation, and that’s where we were headed. I remember arriving at the place where we stayed, called Christopher’s Haven. It really was a haven. They have eight apartments, all for families whose kids are being treated at Mass General, but the best part was “the loft.” It was an entire apartment dedicated to everything fun. We could go there any time and hang out with other families whose kids were sick, and I didn’t feel so alone. Of course there were games, movies, and supplies for any art project, but they also had amazing visitors like the real “Captain America,” college students to cook with, and even a magician who got himself out of a straight jacket.

Radiation to the brain doesn’t hurt. But the treatment I had to endure every day for six weeks was no walk in the park. I had a special mask fitted just for me. It started at the top of my head and went down to the middle of my chest. It was made of hard plastic and had lots of small holes so I could breathe. The mask was used so they could lock me into the table I would lay on, and I couldn’t move. This was super important because the treatment I had was like a sniper. The beams of light targeted the cancer cells, while avoiding other tissue. They went all around me for about 45 min and then I was done for the day. During the radiation, there were a couple of minutes that took every ounce of might I had to get through… when the beams hit some part of my tumor, this horrible smell happened. It was foul. My mom came up with the idea to get Vaseline and scent it with the same oils they use to make candy. I liked watermelon the most. The first few weeks were okay, but then it started becoming impossible. They had to give me medication to keep me calm. It sort of worked. The nurses also read me jokes and riddles from the other room since no one was allowed in there.

In spite of all that, my memories of that time are really special. As long as I was feeling well, we had a new adventure every day in Boston. Red Sox games, Duck tours, science museum, cannolis, and eating every lobster roll we could find in that city. I feel so connected to Boston even today and I hope to go to college there next year.

After six weeks, we flew back home, and a few months later I went back to school. I was really exhausted after everything I had been through and it took me almost six months to really feel good again. However, cancer never ends with the end of treatment. It’s just the beginning of a long journey.

Every three months for the first few years I had to have an MRI which always takes two to three hours. Slowly, they started to get further and further apart, moving first to every four months, then five months, and further and further until finally at year five, I only had to go every year, which I still do today. I have had some complications from the treatment that I endured, mainly a spinal fusion in 8th grade. On the upside, I will never have bad posture and never hear my mom telling me to sit up straight!!! By the time I started high school, I was so happy and excited for what was to come, and I felt really good.

High school has been an incredible experience for me. I love everything I learn, and am so grateful for my friends, teachers, and all of the adventures I have taken. I even spent 26 days backpacking throughDeath Valley with my classmates and was able to carry a heavy pack and hike miles and miles every day.

Life is a gift, and I live every day to the fullest. I give everything my all, and know I will never give up. There have been many lessons I have learned from this experience, and it has made me more compassionate, empathetic, and grateful for all of life’s gifts. I’ve got one more year until I head off to college, and let’s hope it’s in Boston.