One patient's story: life after neurosurgery

Amy, one week prior to visiting Children's Hospital Boston
Amy, one week prior to visiting Children's Hospital Boston

As a high school sophomore, Amy Rucki was admitted to Children’s Hospital Boston with a brain tumor. She was followed by ABC camera crews, who were taping for the medical documentary, Boston Med (tune in tonight at 10 p.m. on ABC). Though she wasn’t included in the final cut of the show, you can watch exclusive mini-episodes about her experience online (part one here, part two here). Below, Amy reflects on being a teen, brain surgery and her long road to recovery.

In the spring of 2009 I began feeling sick, on and off, for seemingly no reason. My blood pressure was higher than normal, my heart would occasionally palpitate and every now and again I’d get strong flu symptoms. It was confusing and slowed me down some, but for the most part I was a just another high school sophomore, finishing up the school year and anxiously awaiting prom. (I went to my first one that May). The dance was great, but just one week later my whole world changed forever.

I woke that morning with an extreme headache. I’ve had headaches in the past, but nothing like this. I laid flat on the couch in a dark room for hours, but when the pain refused to go away my mom asked if I wanted to go to the ER. “No way I’m going to the ER for a headache,” I said. “They’ll look at me like I have three heads.” Turns out I was wrong.

The next morning I saw my pediatrician and he sent me to the local ER to have fluids pumped into my body in case my headaches were caused by dehydration. The fluids didn’t work, so they took the conservative approach and did a CT scan of my head to see if they could locate the problem. The doctor then called my mom into a room and said they found something on the scan, that’s when I heard the words: “We are calling an ambulance and transferring you to Children’s Hospital Boston.” I got to the ED at Children’s and had another scan. My doctor, Dr. Elisabeth Ashley, came in and told us I had a mass in my brain.

My mom asked Dr. Ashley if she had a name for the “mass,” but Dr. Ashley said that they wouldn’t be able to identify it for sure until after a biopsy. When she returned from caring for another patient, I let everyone in the room know that I had my own name for the brain mass – I named it “Fred.” Naming this foreign thing growing in my brain made it somewhat easier to talk about, but not any more welcome, so I told everyone that Fred had to go. From that point on, everyone, including my doctors, referred to the mass as Fred and made it their mission to help me get rid of “him.”  It may sound crazy, but after this experience I understand why people tell you to name your fear; it truly does make it easier to conquer. (We even called Tylenol, which I took for the headaches, “Fred food” and “fed” it to him when he was “cranky.”)

Ed Smith, MD
Ed Smith, MD

I was admitted to the Children’s neurosurgery floor that night, and, as it was my first hospital admission, I was terrified. I didn’t sleep at all at first but the nurses were the sweetest people I have ever met in my life. By the next day the medication made the pain go away and I was up and about, talking to people and visiting with friends and family who had come to see me. Later that day, my parents and I met with Ed Smith, MD, who would become my neurosurgeon. He was amazing- everything I pictured a neurosurgeon to be plus more. He made us feel so confident that everything would turn out OK. However, he did explain to us that there was a chance I would have some left-sided weakness after the surgery due to the location of my tumor. Surgery was then scheduled for a week later, and I was stable enough to be discharged until the operation.

I managed to fit a lot of fun things into that week, but when my parents woke me up early the morning of my surgery, the reality of the situation pulled me back to earth. I was nervous, but honestly, it is scarier for me now to write about preparing for brain surgery than it was to go to pre-op. Everyone is so wonderful at Children’s that you almost don’t have the time or need to worry about what’s happening at the time. After seven and half hours of surgery I was awake and talking in the ICU. Soon after we got the pathology reports that assured us that “Fred” was benign – I would not need any further treatment.

It was great news, but my journey wasn’t over yet. Not by a long shot.

I don’t exactly remember when it was that I first discovered I didn’t have movement on my left side. I knew the possibility of having left-sided weakness after the operation was there, but I never had imagined that I would be paralyzed. But that’s exactly what happened.

“The best advice I could give to anyone dealing with chronic illness or hardship is to never stop smiling and always stay optimistic. This probably sounds cliché, but laughing really is the best medicine.”

Having no function on my left side made it hard to do pretty much everything. I was no longer an independent teenager- I now relied on my mom to do everything for me, from rolling me over in bed to getting me dressed every day. I never knew how much I used both hands in day-to-day things until I could only use one.

I spent some time at Spaulding Rehab center, but soon after, I started getting headaches again so I went back to Children’s so they could keep an eye out for any infections on my brain.

Back at Children’s, my therapy continued with my new physical therapist Andrea Plant, who I would soon learn was to become a very important member of my medical team. Usually my mom came with me to every PT session, but one day I told her I’d go through the session alone and that she should get some rest and maybe a well deserved hot shower.  That day’s therapy was particularly good, and Andrea and I decided my mom deserved a pleasant surprise. With Andrea coaxing me on, I handed her my cane and I rounded a corner to meet my mother, walking on my own two feet for the first time since my surgery. I can still remember my mom’s face because I could tell she was just as surprised at what I could do as I was. The only person not surprised was Andrea; she had all the faith in the world in me and I will never forget her. She would always tell me how great I was doing and that I could never give up. In return I worked harder because I wanted to show her the best I could do. I will never again take walking, or even moving, for granted.

Amy's aunt made hats stating the family's stance on "Fred"
Amy's aunt made hats stating the family's stance on "Fred"

One year after surgery, I still continue with both physical and occupational therapy.  At times, I get frustrated that I am still wearing a brace on my leg and  that I don’t have full function in my arm and hand, but then I remember how far I’ve come. Not long ago I couldn’t feed myself, roll over in bed unassisted, or even give people a full smile. Now, I can do all that plus a lot more. I still can’t play sports and have had to put getting my license on hold, but I don’t think too much about those things because I am alive and healthy.

The best advice I could give to anyone dealing with chronic illness or hardship is to never stop smiling and always stay optimistic. This probably sounds cliché, but laughing really is the best medicine. Children’s staff always referred to my room as the “party room” because they could always hear us laughing and having fun. My friends and family played a huge part in how I overcame my illness. I know that their constant support and my mom staying by my side for the whole thing is the reason why I succeeded as well as I did.

This is definitely not a ride that I would have signed on for, but I lived it and in the process I met some great friends and had some surprisingly wonderful experiences.  Ever since I was little I wanted to work in health care, but now I have the nurses at Children’s to thank for helping me decide to pursue a career in nursing. Children’s saved my life and I hope to return the favor someday day by becoming a nurse and helping someone else.