"We were able to provide him with something the system simply could not, and that is the love, compassion and care of family."

The saying that it takes a village to raise a child is equally fitting (albeit with a few slight modifications), in relation to the care of a patient with glioblastoma multiforme (GBM): it takes an army to care for and maintain a life filled with dignity for someone in the advanced stages of this horrible disease.

We are fortunate as a family we have been blessed with the collective resources and can-do attitude to have lived out this decision for our father to be able to care for him to live the remainder of his life with his dignity intact and all in the comfort of his own home, surrounded by loved ones at all hours of the day.

We made a decision as a family that we all would do whatever was needed, regardless the cost, so that my dad could remain at home. By hook or by crook we all chipped in, be it financially, or with our time, care, skills and researchings in order to put this decision into action.

There are all kinds of things that I haven’t listed and that we just did without thinking twice about on a daily basis that gave our dad the quality of life that he deserved, and helped to give him the will power, the desire and drive to continue.

Mom: Starting her day before 6am in order for her to race to get ready before my dad would wake and ending them around 9, but not before she would prep and clean for easily the next hour all of his items to ensure they were ready to go for the following day. Besides the usual daily routines, there were physio and speech therapy appointments.

Sean: He drove them back and forth for numerous appointments that could only be scheduled in Calgary and stayed with them in Calgary again for the entire month of April while our dad engaged with his first rounds of chemo and radiation. To say that he drove also doesn’t truly do the service justice, because as the disease progressed, driving also entailed assisting/hoisting our dad getting in and out of vehicles to either use his walker or, later, the wheelchair.

He also made modifications to the garage steps for easier in and out. He re-positioned furniture and entire rooms to accommodate our dad’s needs/to facilitate his ease of travel, make-shift bedroom out of the former family room on the main level so he could avoid the more taxing stairs to his bedroom, numerous doctors and rehab appointments following his discharge from the hospital in Lethbridge.

Richael: Dad was diagnosed shortly after my sister Richael had given birth to her 3rd child (and a mother to two other girls both under 3 years old at the time), yet she still managed to find hours in her days and the energy to not only take care of her own family, but to also prepare delicious meals for mom, dad and Sean to take when they were away in Calgary for treatments so that they did not need to worry about what to cook on top of all the logistics involved in attending appointments.

Aileen: My sister Aileen, moved from Australia back to Lethbridge to help care for my father. She uprooted her entire medical practice and career so that she could be on hand for my parents and be of service and assist my mother as a joint full-time caregiver. During those first crucial days while we were awaiting his surgery, we learned through my sister, by way of some of her colleagues, of alternative treatments that were available in the UK with promising results. Aileen poured through rafts of findings, reports and publishings to decipher and translate the values and risks associated with the treatment we were considering. It was all very encouraging. We petitioned the program in the UK and educated my dad’s team of doctors, oncologists and neurologists/surgeons back in Alberta as to the opportunity to augment their treatment for him. Part of this was to properly preserve a portion of the removed tumour for future use in the creation of a customized vaccine designed to destroy any remnants of my dad’s tumour (which would not be possible to be removed through surgery alone).

This treatment involved us engaging in overseas travel to take my dad to London, UK where he was to receive the immunotherapy treatments in-person, as at the time it was impossible to have the treatment administered in Canada, as that is a treatment option that is simply not offered by or sanctioned (at the time) under Canadian health care. Though our dad would soon change that and go on to make medical history for all Canadians afflicted with GBM.

That’s where I came in.

We knew that the travel would not be possible for my mom to attend with my father by herself, so I stepped forward to make the numerous ongoing international journeys with my parents that would be required under the vaccine’s aggressive treatment schedule.

The itineraries involved me flying first from Toronto to Calgary where my brother would drive our parents up (from Lethbridge). From there, we’d make the overnight flight across the pond to have at least a day’s period to adjust to the local time zone before the day of our appointment. The first trip involved us staying for a week so we could make our first two scheduled appointments. On subsequent trips to the UK, we also made the round trip to Ireland several times in order to enjoy quality time with my father’s siblings and nieces and nephews. It was an incredibly powerful piece of our father’s recovery, as walking and driving those old roads and memories helped to unlock rafts of long since forgotten recollections, while bolstering his vocabulary, conversation and confidence. All while creating some very special memories that I know he absolutely cherished and adored every minute back on the old sod.

There was a good period of many months where he almost regained all of his abilities, even if slightly reduced from his former glory. There were days where he barely needed a cane or his walker, and where he would talk up a storm and keep pace with everyone and the most he would need was a rear guard or a helping hand for stability as he climbed stairs (due to his reduced depth perception from his vision which never fully recovered following the surgery resection).

Eventually, and after a series of unfortunate events and delays, the disease started to return and along with the progression, his abilities started to regress. It was painful to witness and incredibly frustrating for himself after having battled and come so far and against all the odds and prognosis’ on recovery.

We were able to provide him with something the system simply could not, and that is the love, compassion and care of family.

There was a time for a while where I think we all forgot about the borrowed time we were on. We all just kept assuming that his incredible recovery would keep going and get better and better with each new day. Perhaps it was naive optimism, but it was that same optimism and cheery and grateful disposition that my father had each and every day he endured this illness that led to him defying all expectations of length and quality of life.

I think had we not taken our dad to the hospital for fluids that fateful day in August, 2023, he would very likely still be alive to this day and would have been around to witness the birth of my Son, my brother’s daughter’s graduation from high school, Richael’s youngest daughter’s 1st birthday and Aileen’s graduation from Harvard! There were so many more milestones he set for himself during his recovery and he was on track to achieve and be around for ALL of them.

Taking care of my father was a family effort, augmented by the generous contributions of friends and extended family and countless care and service workers. It was exhausting, demanding, grueling, cruel and unfair —mentally, physically, emotionally, financially… And I am certain that I speak for all of my family when I say, we would all do it all over again without hesitation… for him.