Aaron’s story: A family navigating the end

Heather Cooke is Aaron’s mother. She lives in Kingston, Ontario and has had a diverse and interesting career at Queen’s University in several faculties for 40 years. Heather’s relationship with her son was always her passion. Aaron was not only her child; he became her best friend. Her life was full of her work; her grandchildren; travel with her husband; and much joy; until Aaron was diagnosed with stage IV colon cancer February 28th, 2019. In putting to paper the powerful and very personal story of Aaron’s end of life Heather is longing to bring the fear of untimely death and the grieving process more fully into the light. 

Part II

Saturday, September 12th 2020, began for us with sunny skies; a cup of coffee and conversation in our living room. We had been with Aaron, Cynthia and their boys (Oliver 11 and Avery 8) on Friday late day and were not anticipating seeing them again throughout the weekend, unless called upon.

I had wakened believing the debilitating symptoms from Aaron’s last round of chemo would be abating today and that the weekend would bring him some physical relief and with that better family time and possibly a visit or two from his friends.

Aaron was coming out of round 5 of chemo after having been told on April 20th that his stage 4 colon cancer had returned and was travelling thru his lymph nodes with new tumours on his liver and lungs. His days since April 20th had been full of shock; horror; disbelief; fear; anger; distress; pain; sleepless nights; acceptance; courage; wisdom; and preparing his sons. He knew; we knew his days were numbered and his leaving us was inevitable. However, on this beautiful Saturday morning we were clinging to the fact that his latest cat scan in early September had disclosed that the tumours were not growing significantly; and that the oncologists had “some” hope that with further treatments Aaron might stay with us a bit longer.

Aaron had been fighting the cancer war since his initial diagnosis, February 28th 2019 and for a brief period in early 2020 we had hopes he would stay with us much longer.

In early summer 2019 after one of our many mother/son lunches, Aaron came back to our place, and it was during that conversation that he firstly raised the topic of “Assisted Dying” with me. He calmly and rationally explained to me how important it was that I support and assist him in enacting his wish to “die with dignity”.

That day Aaron explained that his pure motivation in this decision was to ensure his boys never had to experience their father’s body and mind painfully deteriorating in front of them as they had to wait and watch, knowing there was no hope left for Aaron to stay with us.

From the moment I owned this was Aaron’s new reality, I knew my response to his request was critical. The honour I felt in knowing he trusted our relationship enough to ask for my help if needed will remain imprinted in my heart forever.

That September morning, I will forever remember the moment my cell phone rang and Cynthia’s number came up requesting a Facetime call. When I saw my daughter-in-law’s face, I knew Aaron was in trouble.

We often identify these moments as surreal; “marked by the intense irrational reality of a dream”, but in this moment my feelings were one of intense reality. We were in real time experiencing the possibility that Aaron’s life was ending.

Cynthia was calm yet shaken as she explained to me that Aaron’s internal bleeding had returned late Friday night; that he had begun the medication prescribed to help slow the bleed but that throughout the night she and Aaron had discussed “next steps” if the bleed continued and intensified.  Aaron was not going back to hospital in ambulance and leaving us; he was going to continue on the medication for the weekend; if the bleeding eased up and he could care for himself he would agree to go to hospital Monday morning for a possible blood transfusion; if that was not to be and he continued to bleed and weaken he and Cynthia would discuss next steps; which I knew would involve a call to the “assisted dying team” .

It was agreed that Bill and I would come over to be with Aaron, Cynthia and the boys after Cynthia and Aaron had some time to share with Oliver and Avery what had transpired Friday night.

Aaron has never embraced drama as an emotional outlet in times of crisis or even greatest joy. He emotes a sense of practical, and rational behaviour and yet at the same time; without even being aware of it his presence fills a room; his smile can light up every tiny corner; and his anger can bring on very dark clouds. His words matter! But he was an innocent in that he never fully recognized his own courage and immense heart. Throughout his 18 months of fighting for his life his courage and heart kept expanding as he exhibited all the human characteristics of fear and anger; sorrow and doubt; hope and hopelessness. I had reached a place in this journey of feeding off of Aaron’s emotional state whenever I was with him. Therefore, on this Saturday when Bill and I headed to Aaron’s home, the tears flowed uncontrollably until we arrived in their driveway; and then intuitively I knew I would begin to take my emotional lead from Aaron.

We immediately registered that Aaron and Cynthia’s car was not in the driveway. Cynthia was waiting in the living room nervously browsing thru a magazine. She explained that Aaron had enough energy to get up; shower and dress; talk to the boys and then make the decision that he was driving to McDonald’s on his own to purchase his usual double/double coffee. This was the last time Aaron drove his new car, or left his home. We had a few moments with Cynthia before Aaron with coffee in hand arrived back home.

Aaron seemed somewhat hopeful that the blood clotting medication might provide some relief. We talked generally about the situation; and how the boys were coping. They were both absent from the room during this early conversation. Cynthia also informed us that Aaron’s father (Closten) and stepmother (Nancy) had been called at their home in Toronto. They had been planning to visit Aaron the upcoming Wednesday. Closten initially felt that he and Nancy would wait to travel to Kingston in the hope that Aaron’s health would improve over the weekend. Upon reflection, Closten called back to say that he and Nancy were leaving Toronto shortly to come and be with Aaron. We collectively breathed a sigh of relief.  Aaron needed his father.

The boys joined us briefly, and we could see they were coping, taking their lead from their parent’s optimism. Everyone that late morning was holding onto hope. Aaron was fully engaged in all conversation and he shared a headline about the mayor of Kingston publicly announcing that he and his family were leaving a “cult” like local congregation. Aaron handed me his iPad sharing a link with a photo image of the person who was “minister” to this group. And in Aaron’s typically wry manner he expressed his disappointment with a childhood friend who continued to be part of this same congregation.

The day was beautiful (sunny and warm); and we knew Closten and Nancy would not be arriving until at least 3:30 pm. Aaron and Cynthia asked that we not do our usual departure when Aaron’s father arrived. I could also see that Aaron was beginning to tire.

The boys were keen to swim in their “newly installed pool”. So, while they and Bill went to change into swimsuits, I had a few moments alone with Aaron. Our conversation moved to what Aaron might still want to do this fall if our fears about his health were not realized. He quietly informed me that he wanted to take a road trip to his father’s condo in Tremblant Quebec, to experience the fall colours one more time. I encouraged him to stay focussed on that possibility, and he smiled and reminded me about all the practical reasons that this wish might not be a reality.

For a few sunny warm hours Bill and I, Oliver and Avery enjoyed being outside; Bill for the most part playing with the boys in the pool while I watched and worked around the pool and backyard, needing to keep busy. Aaron had headed back up to his bedroom with Cynthia; and while we were keeping the boys engaged, he was weakening; losing more blood and discussing with Cynthia options for next steps.  However, Aaron could see from the upstairs window how much his boys were enjoying “the pool”. The pool was Aaron’s last project for his family.

Aaron had a direct cell phone number to the physician from the assisted dying team; all the legal papers had been officially signed; and he had met twice with this physician for lengthy and detailed conversation as to what Aaron needed from him should the time come where Aaron must decide. Currently the “MAID” protocol is such that a patient can determine a date, time, and place to be assisted in dying; or the patient waits to determine such time and calls the team when they recognize there is a need for action. With the second option a person might have to wait up to 48 hours from the time of call. In Aaron’s case the physician agreed he would be “on call”, and when Aaron was ready, he would make himself available to assist within a few hours time.

Closten and Nancy arrived around 3:45 pm. and while Cynthia was supporting Aaron upstairs, we briefed them on the situation as best we understood it. I had asked Cynthia at one point during the afternoon if I could help her and Aaron; and she assured me that keeping the boys busy was the best support.

Shortly thereafter, Aaron and Cynthia came downstairs. The change in Aaron from when I had been with him in the morning was stark. He greeted his dad with affection and asked that we have a “family” meeting. In the morning, Aaron had been sitting upright on a sofa; by the afternoon, he was now propped up on a lounging/reading cushion.

Oliver commented on how much he did not like these kind of family meetings as his dad began to share, he was weakening and worried that the medication might not be working; and if that was the case, he and Cynthia would call in the medical team before Monday. However, he quietly explained to the boys that “daddy” did hope things might turn around and he would still make it thru to Monday and another blood transfusion. No one cried, but we all sat in silence absorbing this very tough news.

Avery was the first to leave the room, and he headed down to the gaming room. I followed Avery to the basement. He did not want to talk; he wanted to escape and game. I quietly sat with him drawing comfort from this amazingly brave little boy.

Our last “family meal” with Aaron was a takeout meal from the boy’s favourite burger joint “Five Guys.” Aaron continued to stay with us but was not well enough to sit up at the table. He was hungry; and it was Avery who asked his dad if he would like to try some food. Aaron asked for a plate of fries and Aaron’s last meal with us was served to him by Avery carrying a plate to his dad; watching over him; gently patting him on the shoulder and getting him a second helping and a glass of water. The gentleness, and love between father and son so complete.

I knew I needed to stay the night. Aaron hesitated ever so briefly when I asked, and then said “yes,” if it would make me feel better. This permission was our cue to take a break and head back to our place for overnight articles. It also opened the door for Aaron’s dad to have more time with Aaron. Before we left, Aaron asked me if I would sort thru the childhood albums and boxes that were in my possession and bring them back for us to view as a family. In my haste to pull together overnight clothes and toiletries and head back to Aaron, the photo albums were forgotten.

When we returned Aaron had already headed upstairs to his bedroom; and the boys were preparing for bed as well. The boys were in and out of Aaron’s bedroom that evening continuing to treat their nighttime rituals with him as they always had. Aaron had been re-watching the television series “The Sopranos” during the past several weeks; and he was two episodes away from completing the series. He left us determined to finish the episodes that evening. He never quite made it. I did not ask to see Aaron that evening after he went upstairs. The upstairs evening time was their family ritual.

Cynthia and I had quiet time that evening after everyone was settled. Those moments of being together as wife and mother of Aaron were full of love and fear.

Read the third part of Aaron’s story: Saying Goodbye