Why Child Life? 👍

Junior Year - 2008

At the age of sixteen I was diagnosed with a juvenile pilocytic astrocytoma... a brain tumor.  I have told my story so many times that I have honestly become numb to it.  Lets start at the beginning shall we?  My mom told me that when I was a baby until about around six years old, I excelled in my academics.  However that all came to a screeching halt in the first grade.  I have had issues with my memory and my learning ever since.   For years my mom paid for private reading tutors.  She would spend hours helping me with my schoolwork, which I just couldn't retain, and eventually I was supported with an IEP and additional services in school.  In addition to my educational difficulties, it would be an understatement to say that I was just a sick kid - I was sick constantly.  After a while I thought it was like my superpower.  Phemonia, sinus infections, and common colds were around every corner for me.  

March 9, 2008

Monday March 9th was the last day that I attended classes my Junior year of high school..  I had a headache but I went to school and dance like any other day.  After that, my headache was so debilitating that I didn't move from the couch; leaving the house only to go back and forth from to various doctors.  Multiple rounds of testing were done... I got bloodwork, I went to a neurologist for a full workup (which I passed), I had x-rays, and no one could answer what was wrong with me.  I started sleeping for hours.  I missed my friends.  I missed school.  I missed the world outside my house.  

March 24, 2008

With the blessings of my pediatrician and neurologist, my mother brought me to Hasbro Children's Hospital to find an answer.  Of course, I did not present as a sick kid - instead I was friendly and upbeat to each new nurse and doctor that came into our room in the ER - to the point that they called my pediatrician asking why I was truly there.  We were there for hours.  Finally, the CT scan showed a mass.  Soon after, they put a nurse in my room while I slept and took my mom for a walk down the hall.  From what she tells me they walked for what seemed like forever just talking but not really saying anything, then when they were far enough away from the room the doctors closed the door and explained... I had a brain tumor.

I was immediately admitted and moved upstairs to a room in the ICU.  And here is how the next three months went: I had my first surgery to remove the tumor on Wednesday March 26, 2008.  The tumor, which they concluded started forming around the time I was in the first grade, had been pushing on my hypocampus, the part of the brain that controls memory.  Consequently, the struggles I had growing up made sense - the trauma of surgery did not help the situation.  However the surgery was successful and the entire tumor was removed and the culture came back negative for cancer - I was scheduled to go home in a few weeks and return to my life.  Awesome, right?  Whelp, it would have been but days after the surgery, I contracted a rare water born infection from what we assume was due to a nurse attempting to wash the crud and goo left in my hair after surgery.  The infection destroyed everything.  

March 24 - May 13

If there was one word to sum up my nine week stay in Hasbro Hospital it would be hell.  To make a very long story short, the infection caused an absess filled with bacteria to form in the spot that originally held the tumor.  Over the course of nine weeks I had five more surgeries.  The surgeries in combination with the tumor and infection caused the ventricals in my brain to become so heavily scarred they stopped working.  Consiquently, I had to have external drains and brain shunts implanted to drain the cerebral spinal cord fluid from my brain into other parts of my body.  At my lowest, the infection was so destructive my brain had started to swell and become unaligned causing me to become paralyzed on my left side.  

Again I'm going to be very honest when I say my time in Hasbro sucked.  I just wanted to go home, I was well beyond depressed.  But through it all, I had people putting a smile on my face... Who were those superheroes you ask?  The Child Life Specialists and the nurses at Hasbro Children's Hospital.  They went above and beyond to make sure that my family and I were comfortable, had everything we needed and so much more.