OUR STORY
Every day, 27 Canadians will hear the words “you have a brain tumour”.
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We are telling Nicholas' story in the hopes it will make a difference for those 27 people, their families, and loved ones.
March 2, 2018 – we did not know at the time, but that fateful day would be the beginning of our heart-wrenching journey. Our son Nicholas, older brother to Jack, suffered a stroke while in residence at Laurentian University in Sudbury, Ontario, where he was in second year of a B. Comm. – Sport Administration degree. We had celebrated Nicholas’20th birthday with him just a week earlier.
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Nicholas (known to many as ‘Fozzy’) was air-lifted to St. Michael’s Hospital in Toronto, Ontario. Initially, it was thought that an Arteriovenous Malformation (AVM) deep in the left side of his brain had caused a stroke. Upon further examination and biopsy, it was confirmed that Nicholas had Glioblastoma - a large malignant tumour behind the AVM, in addition to a second smaller lesion at the back of his brain. We cannot possibly put to words the devastation and heartbreak we felt in that moment – maybe some day the words will come. What I can say is we fought the urge to let fear, darkness and devastation take over – every day. Every single day was a test of will - we chose to focus on bringing our son home, chose to go forward with faith and hope in our hearts. There was simply no other viable option. It was clear from the beginning that Nicholas sensed our fear and sadness. He needed to see and feel our positivity and hope, not just our enduring love – without either, we knew he had no chance. And that was just not something we were willing to risk.
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As much as we want to share with you how bright, spirited and incredible our beloved son and brother was, sharing some of his journey following an aggressive, inoperable brain tumour diagnosis is vital in appreciating his heroic courage, strength and perseverance. Just one day after his diagnosis, Nicholas was transferred to Hamilton Health Sciences to begin radiation treatment and chemotherapy. In addition, he would soon begin rehabilitation as the stroke had caused mild dysphagia (difficulty finding words) and right-side paralysis. Nicholas’ grueling journey to regain the use of his right arm and leg began and with only a week (or so) of rehab, to the amazement of his physicians and therapists, Nicholas was once again taking steps with his right leg.
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However, the joy we felt in our hearts and crooked smile on Nicholas’ face would be short-lived. On March 30, 2018, less than one month since his stroke and following 5 days of radiation and chemotherapy treatment, Nicholas suffered a massive brain hemorrhage. Once again, he was rushed to St. Michael’s Hospital at the recommendation of his neurosurgeon (Dr. Julian Spears). The large blood clot was successfully removed, along with his left bone flap, to accommodate swelling of the brain. Following his hemorrhage, Nicholas’ dysphagia was considerably worse. He had great difficulty finding words and naming objects, though he understood completely and was able to respond to yes/no questions. He had lost peripheral vision as a result of the hemorrhage and there had been some degree of cognitive impairment. Unfortunately the gains he had made in the use of his right hand and leg were lost. Following a scare due to an excess of fluid building within his brain (hydrocephalus) Nicholas was once again transferred back to Hamilton Health Sciences to restart cancer treatment. Eventually, physiotherapy began once again, once the risk of his brain shifting in a catastrophic way due to the missing bone flap, had reduced.
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On May 2, 2018 after two incredibly long months, we were finally able to bring our boy home. Nicholas continued to battle through chemotherapy and radiation treatments and on June 4th, with assistance, he rang the bell to cheers from radiation therapists and fellow cancer patients. Once again, it is difficult to explain how we felt. As his mom I was completely overwhelmed by so many emotions – joy, pride, anger and fear to name a few. A few weeks later we were back at St. Michael’s Hospital to have his bone flap reattached and by July Nicholas began physiotherapy and speech therapy, with the fear of his brain shifting in a catastrophic way now behind us.
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The next several months were a gift – nothing short of a blessing. Once the fatigue of radiation lifted his spirit and personality began to return. With hard work and determination, Nicholas continued to regain strength in his right leg and was once again taking steps with assistance. His speech was slowly improving. Our son and brother was coming back to us. We had a wonderful Christmas that year. Nicholas was showered with gifts from family and friends and it brought us joy to see his happiness, excitement and crooked smile. I cannot say we, as his parents and brother that we were happy, but we allowed ourselves to experience moments of joy. Although not spoken, we knew in our hearts we were blessed as it would likely be the last Christmas we would have together as a family.
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Signs of Nicholas’ decline began shortly after Christmas when he started experiencing difficulty with his left eye. Despite this, on January 1, 2019 Nicholas insisted on walking up the stairs on his own (with dad close behind) for the first time in 10 months! But the excitement of this significant accomplishment would be short-lived. Throughout January 2019 he continued to decline neurologically, becoming less aware, communicative and engaged. He developed a minor head tremor and MRI results from early February identified tumour progression and increasing cerebrospinal fluid (CSF). A more aggressive cancer treatment schedule was delayed when Nicholas became less alert and experienced a decline in his balance and coordination. Once again we rushed him down to St. Michael’s Hospital at the advice of Dr. Spears and for the fourth time, he underwent neurosurgery to have an external drain inserted into his brain. With fluid once again draining and decreasing pressure on his brain, Nicholas’ level of consciousness improved and 3 days later, a permanent shunt was inserted into his brain.
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Nicholas’ 21st birthday marked the beginning of Avastin infusions and a more aggressive chemotherapy regimen. The resulting exhaustion and weakness limited his ability to continue with physiotherapy. By the beginning of March his head tremor had become more pronounced and continuous and he developed a tremor in his left arm. As a last resort he underwent Botox injections in his neck muscles to weaken the tremor but this also resulted in his inability to hold his head up well. Shortly thereafter the tumour started causing difficulty swallowing which resulted in a diet of thickened liquids and puree.
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His steady decline was now very apparent. And as if our son had not suffered enough, in early April he started having episodes of Supraventricular Tachycardia or SVT, which caused his heart rate to suddenly race to dangerous levels. Throughout April and May Nicholas had multiple episodes, each resulting in him being rushed by ambulance to the nearest Emergency Department and undergoing increasing doses of adenosine to stop his heart and allow it to restart back in a normal rhythm. When medication no longer worked, Nicholas underwent cardiac ablation surgery.
By the end of May Nicholas started battling high blood pressure, increasing nausea and vomiting, more noticeable weight loss, pressure ulcers and recurring UTI’s. By the beginning of July Nicholas started experiencing terrifying seizures which left his right eye deviated. In the beginning of July we had to rush him down to St. Michael’s Hospital once again following a sharp decline in his level of alertness. For the sixth time, Nicholas underwent neurosurgery to replace the shunt in his brain which had become partially blocked. It was during his recovery that we realized our son, who had been fighting to live every day for well over a year, had finally endured all he could take. The improvements we hoped to see post-surgery did not happen. He stopped eating and drinking. He refused to take his numerous medications. On July 23rd 2019 we made the heart wrenching decision no parent should ever have to make. We decided it was time to let our son go. After 16 months, it was now time to stop fighting and focus instead on keeping him comfortable and showering him with love.
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Like the warrior he was, Nicholas continued to astound everyone for several weeks, surviving on IV fluids only. Family and friends came to say their good-byes and in the early morning hours of September 3rd, Nicholas suffered a neurological event. We were no longer able to wake him though we still talked to him like he could hear us. On September 4th at approximately 3:45 am, our beloved son and brother, was finally able to rest in peace.
As we reflect on our incredible loss and Nicholas' journey, it is impossible not to feel overwhelming gratitude and love for our family, friends and community. The love and support Nicholas and our family received during his 18 month battle with cancer and since his passing, is nothing short of a blessing. I truly don't know where we would be without each of you. As difficult as it is, we are telling Nicholas' story to demonstrate his strength, courage and perseverance.
With your donation, together we will bring hope. Hope through support, hope through information and education, and hope through research. Together we will #EndBrainTumours.
THANK YOU!