Courtney’s Story of Stability

Courtney’s Story of Stability
Stability. It’s a strange concept when you have what it known to be a progressive, life long illness. You hear the words, “Your tumour growth is stable” and for a moment you think someone is playing the world’s worst prank on you. 
You know, I don’t consider myself a glass half empty kind of person, but I always prepare for the worst and hope for the best. Maybe that’s the registered nurse coming out in me, maybe it’s the realism in me. Or fear… I don’t think I will ever know.  
I was diagnosed with a genetic condition called Neurofibromatosis (NF) when I was three years old. A large part of my life has been a revolving door of specialty appointments, tests, scans, and follow up appointments. Neurofibromatosis causes tumours to grow uncontrollably on the ends of nerves, both internally and externally. These tumours can grow on vital organs such as the spinal cord, adrenal glands and the brain. Boney deformities, learning disabilities, cosmetic problems and cancer are other problems that are associated with NF. 
When I was 13 years old, I had what would be my very first MRI scan of my brain. I remember a frightening number of details from that day. I remember the 4 attempts it took to try and start an IV. I remember the cold, hard bed I had to lay perfectly still on. I remember the horrendous banging and clanging of the machine. But what stands out in my mind the most, is the fear. I can vividly recall laying there, hypothesizing about the potential outcomes of the scan. I thought about the possibility of having no brain tumours. One, two, three, maybe even four brain tumours. Big, small, benign, malignant- you name it, and I thought of it. 
My life changed the day I was diagnosed with a brain tumour - a hypothalamic/pituitary glioma to be exact. The pediatrician walked into the room, sat down without really saying hello to me and said,
“Courtney, you have a brain tumour. And it is likely inoperable due to its location.” 
10,000 fighter jets must have hit my chest all at once. I was speechless. All those fears that I had talked myself down from were now glaring me in the face. I was facing my biggest fear.
Subsequently, after I was diagnosed with my brain tumour it was discovered that I had hypopituitarism and growth hormone deficiency. The brain tumour had riddled my pituitary gland and left it incapable of producing enough hormones for my body. I also was diagnosed with scoliosis, a rare skeletal rib deformity and tumours were found in my abdomen, pelvis, arms, leg, and ear. 
Do you remember as a child being told by your parents that you are not to go into someone else’s home without being invited in? Well during this time, I felt like my entire body was being invaded by unwanted guests. 
Trying to deal with all of this was incredibly overwhelming. I neglected to tell any of my friends or peers at school about my struggles in fear of being judged and ostracized. I became incredibly depressed, and developed severe anorexia. I bottomed out at 84 lbs. My life was a revolving door of darkness. Of bitterness. 
I self loathed for years, until the day I met Reggie. Reggie is a major NF advocate, and seeing him thrive made me question my lack of willingness to share my story. After meeting Reggie, I opened up to my peers and was shocked when I wasn’t met with animosity, but love and acceptance. 
Since then, I have drastically changed my life. I went to university and am now working as a registered nurse. I sit on the board of directors for a not-for-profit organization that supports individuals living in Alberta with Neurofibromatosis. I write a blog called Courtney’s Column, that focuses on my journey though this whole NF and brain tumour business. I’ve found love. But most importantly, I’ve found purpose. 

My most recent MRI scan shows brain tumour stability, and now I can breathe a sigh of relief. I am stable. I am, and will be, okay.  

Thank you Courtney, for sharing your story of hope!

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Story posted in December 2017.


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