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Children’s patient has brain tumor removed, wakes up a new person

Elizabeth Johnson Camozzi

I was a shy and awkward girl at 12. Sweet and uncomplaining, worried about what others thought, I was the picture of the normal “tween” identity. I also was quite sick.

Frequently, the routine was migraine, nausea and head to school after vomiting. My parents took me to see several specialists, some touting that I had allergies to chocolate, the sun, the color red. But I continued to be sick, and it seemed a natural part of my life.

There were parts of my daily routines that I believed everyone had. Every night, I would imagine hearing monsters thumping up the stairs to say goodnight to me.

Thump, thump, thump, thump.

Elizabeth with Dr. Mary Beth Dunn in 1997
Elizabeth with Dr. Mary Beth Dunn in 1997

As a musician, I would compose music to that steady thumping. During piano lessons, I would play at the same tempo, quarter note equaling 65 beats per minute. My music was always a very steady sound, driven by the thumping that I assumed everyone heard in their ears. During a math lesson in which we took our heart rates for one minute, I was confused as to why others had to hold their wrists and count what they felt for the time; I could hear my heartbeat plain as day!

After a family trip the winter of my seventh-grade year in 1996, my parents took me to get my eyes checked because I had double vision. As the eye doctor was peeking at my pupils, he paused and called an opthomologist, who referred me to a neurologist. I clearly remember the neurologist saying to her medical students, “You do not want to see this when checking your patients.” She called and scheduled me an MRI for that night, and we went straight over. Immediately after, my parents were called into a side room and quickly invited me inside. I had a pilocytic astrocytoma brain tumor that had taken nearly my entire right cerebellum. I was going to need surgery the next morning.

That night, I prayed for God’s will to be done — a hard prayer for a 12-year-old, but I knew that this was out of my hands. This brain tumor was why I was sick. Would I feel better afterwards? The doctors warned my parents that the chances of me coming out with disabilities would be high. I might lose right-arm and leg function as well as acquire a dropped eye and might not be able to function like a normal 12-year-old. My parents were beside themselves.

Elizabeth Johnson Camozzi in 2014-15
Elizabeth Johnson Camozzi in 2014-15

The next morning, we met Dr. Mary Beth Dunn, who was to be my surgeon, as well as Dr. Joanne Hilden, my oncologist. On Friday night, both neurosurgeon partners, as well as both pediatric head surgical nurses, came in for my surgery on what would not normally be a surgery night. My surgery, considered an emergency, was that afternoon, and it lasted until early morning the next day when I was wheeled into my recovery room in the pediatric ICU.

My mother waited with me until I woke up. My first memory was my mom singing “Hush, Little Baby.” I began to wake as she began the song, “Hush, little baby, don’t say a word. Mama’s going to buy you a mockingbird. If that mockingbird don’t sing…” At this point she paused and I began to remember a comedian that my brothers and I had watched who sang the same song with silly lyrics. Before she could sing any more, I chimed in with my scratchy post-surgery voice, “Mama’s going to tear off its little wing.” Between laughter and tears, my family celebrated my awakening.

I awoke a new person. Not only did I remember my family and silly TV shows, I woke up smelling new smells, seeing colors better, hearing sounds clearer. When Dr. Dunn asked how I was feeling, I responded that everything just seemed better. Without a brain tumor pressing on my ear drum and threatening my life at every heartbeat, I felt lighter and more able to perceive the world around me. I woke up a happier, livelier version of myself, and have not stopped since waking up!

My recovery was quick, and within 10 days I was back at school. Having staples down the back of my head made me a bit of an oddity in middle school, and I was teased relentlessly. Children’s Hospitals and Clinics of Minnesota stepped in with a social worker to explain what I had gone through and the medical background to my teachers (and to explain why I shouldn’t play basketball with an open skull). Our relationship with Dr. Dunn and the staff at Children’s continued to grow and flourish. I spent summers at Camp Mak-A-Dream in Montana among other children who were in the throes of, or recovering from, cancer and leukemia. At any point when the doctors informed us that I could not do something, I would do it — play the piano, balance on a balance beam, memorize sonatas. I did, however, cross skydiving off of my bucket list (scuba diving, considered dangerous, was offered in the safety of camp Mak-A-Dream!).

Now 30, I owe my life to Drs. Dunn and Hilden and the staff at Children’s. I feel as if a part of me did not begin until I went into the operating room. When I see Dr. Dunn to this day (18 years later!), she still looks at my scar and smiles. A perfect line down the part line in back of my head, my scar is one of my most beautiful features; it tells a story of survival and hope.