Patrick's Story: "Brain tumours do not discriminate"

Patrick's Story: "Brain tumours do not discriminate"

Patrick was born with cerebral palsy. That did not stop him from playing chess at a master’s level by age 14, winning regional and provincial dressage competitions, achieving his bachelor’s degree in mathematics, finding a job developing software for the aerospace industry for 17 years, then venturing out on his own providing various computer services. Patrick's hobbies include water activities such as sailing, kayaking and white-water canoeing. A few years back, he rappelled down office buildings for charity. It took a brain tumour to slow him down.  

In 2014, just before his birthday, Patrick was diagnosed with craniopharyngioma that distorted his visual field. He went through four transsphenoidal resections before he had a week of radiation treatments. The oncologists Patrick consulted recommended 30 treatments. Patrick thought this was too many and wanted control over his treatments.
Weeks later in December, he noticed the distortion pattern changing to the point of losing vision in the left eye. Was this due to the radiation or did the tumour come back? He was in a very dark place. The only solace he found was in a song that his parents sang to him when he was young. Singing that song kept him going until his next and final operation. Fortunately, that operation was a success, and Patrick’s sight was restored to approximately 88% and is still improving.  
When Patrick got word that the tumour was successfully removed, he decided to incorporate this song in a tribute video to his doctors, nurses, and everyone involved with his care. He has extended this tribute to Brain Tumour Foundation of Canada and all those who shared their story, as the stories shared on this website helped Patrick feel less alone.
Patrick would like everyone to know that "the cerebral palsy was not the direct cause of the brain tumour. Anyone can develop a brain tumour. It does not discriminate".
Update: January 2016

After sharing his story with us in the summer of 2015, Patrick’s eyesight began to fail again. “There was a point when my vision was so impaired that I only saw objects within a foot radius away. Each day, objects looked flatter in different shades of white. I still thought I could last until my operation, but the loss in visual acuity was so fast that my doctor decided to admit me a day earlier for my personal safety. Any abrupt motion made me dizzy.”  
In August 2015, Patrick underwent his sixth operation, this time, a craniotomy. Despite Patrick’s reservations, he went ahead with an open craniotomy. This procedure allowed the surgeon to see the fluid producing tumour cells which the previous surgeries had not shown, and burn them off and drain the cysts. Despite a successful four hour surgery, Patrick’s vision did not return instantly. There was a two week window where the visual field seemed clearer, but the progress was short lived. Two months after the operation, Patrick’s vision went dark again.  
This time was hard for Patrick. He noticed improvements in his sight upon waking, so started to nap more. He started looking forward to the surgeries, and napping to conserve his energy for the next procedure. This plan backfired as his endocrinologist noticed his cortisol and thyroxine dropping to dangerous levels.
Patrick was then referred to a neurosurgical team who recommended installing an Ommaya Reservoir, which provides a way of draining the cyst without multiple surgeries. In addition he was advised to undergo radiation treatment again.
In November, with trepidation, the reservoir was put in place. Patrick was skeptical, “the prospect of threading a thin catheter through functioning brain matter was unsettling to me. A few days later, I realized my faculties, memories and thought processes were intact, and my vision was temporized for a few more weeks. I guess the procedure helped”.
Patrick felt swelling in his head during the first week of radiation. He was given Dexamethasone which helped with the headaches. “Between the steroids and the radiation treatments, my greatest surprise was waking up Christmas morning seeing my vision clearing up and my blind spots getting smaller, slowly and gradually. I have six more treatments to go and I am very optimistic that my vision will be restored”.
In reflection of the last few months, Patrick has this to say: “The urgency that was placed in my care made me realize the severity of my condition and the reasons why timeliness is important. I forgot why I was battling this brain tumour. I need to fight to keep my eyesight and avoid irreparable damages to my visual field that would render me legally blind. The fight is also to save pituitary and adrenal functions and all other systems which rely on them.  The goal is to maintain self-governance and independence. Knowing what I know now, opting to beat and outlast this tumour is just not good enough!”
 Thank you Patrick for sharing your story and for creating such a moving tribute video.

Donate today!Your donation to Brain Tumour Foundation of Canada reminds survivors like Patrick that they are not alone. Stop brain tumours in their tracks. Donate today. Thank you for your support.

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Story posted: July 2015 


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