Ryan had only been back to work a short time, starting into his third week. I was just learning how to be a mommy to two healthy, beautiful boys – the first time since Joren was born more than a year prior. That morning, Keian and I packed for our day to head into the hospital - mommy and son days as he would call it. It may have been all we had at the time, but we were together and we both loved that beyond measure. Results were taking much longer than usual. They felt confident to send us on our way and mentioned that once they received results, they would call if he had needed a transfusion prior to surgery the next day. We left hand in hand and happily made our way to the parking garage. Just as I turned the key, a nurse ran out and stood by my window. I will never forget that look. She said; “We need you to come back upstairs to discuss Keian’s results”. Just then, another nurse opened the back door of my car and told me they were going to take Keian to play. I remember sitting there staring at her for a moment before the words sank in. I panicked and although I seemed frozen in the moment, I remember screaming; “Is the Leukemia back?” “I’m so sorry”, she said as she started to cry. How could this be happening? Look at him. He’s perfect. I was alone, sitting in the dim parking garage lot. I sat there screaming, as I slumped over the steering wheel. I couldn’t breathe, but I made my way up to the elevator and down the hall towards the clinic. I wanted my baby. I can remember nearly collapsing outside the clinic as I used the wall to hold myself up – only a vague memory remains of how I actually got into the room to hear what I had feared from that very first day. I can remember piles of people entering the room with arms around me, watching me as I cried in horror. They too had tears rolling down their face. I felt numb.
I completely lost my thoughts and all relation of time, so really, I don’t recall exactly when Ryan got there. We had been in that same room many times; having felt both elated and defeated. The room and the surroundings appeared different that day. That feeling of security was gone. I felt lost and as she began to speak, her words began to fester. I remember hearing; “limited options”, “expectancy”, and “unlikely long term survival”. I heard the words, I understood their meaning, but I couldn’t believe after an entire year of fighting for his own precious life, he would lose that battle. He had proved them wrong many, many times before. He wasn’t part of their typical textbook cases that they’ve studied, they said, so the answers remained minimal. His leukemia was aggressive, as well as rare, which made treatment options even more scarce.
As they all left the room to give Ryan and I time to process how things have gone so very wrong, so very quickly, we looked at eachother. Our eyes were locked – we didn’t need words. We need our boy, Joren needs his brother and Keian needs us all. Now was not the time to fall to pieces, we just couldn’t – it was not an option. Throughout Keian’s treatment, and even now, I’ve been repeatedly told how strong I am and had they themselves been in our place and time, they didn’t think they could do it. I don’t know why exactly, but that phrase doesn’t sit well with me. Yes, I’m strong – if I wasn’t, I guarantee that I wouldn’t be here at the moment writing about the most horrible time of my life. Am I given a choice of whether I want to be strong in that given moment? Yes and no. I suppose I could just completely unravel and succumb to the inevitable, or so it may seem. For me, that was never an option and I never allowed myself to give into my fears. Being a mother doesn’t just make you entitled to make your claim on your child. Being granted the gift of motherhood doesn’t happen to everyone and for that gift, I never underappreciated. I would do absolutely anything for my children, to protect them, to guide them, to help to mold them into beautiful little boys and then in to beautiful men, but most of all love them. I can remember standing by the nursing station watching him play – it took every inch of whatever bravery I held within myself to take those steps towards him. It was time to go home – to whatever we called home at the time. We attempted to make the ride home as fun as possible, but looking back, I know our minds were elsewhere and our hearts were left behind in that very room. We had barely walked in the door, when the hospital called to tell us that rather than coming back tomorrow morning, we had to come back immediately - the x-ray had shown another mediastinal mass covering his airway. When Keian was initially diagnosed back in July 2012, he had this same mass. This mass in not like that of a solid tumour, but the Leukemia cells had become so sticky that they had begun to accumulate in order to make a mass collection. This very mass, at any given time, could have strangulated his air supply.
I still remember the room we were admitted into - the window overlooked the playroom. I climbed into the bed with him, held him and cried. He asked why Ryan and I had been crying – we had always been very honest with him regarding his treatment thus far, bearing in mind what a 6 year old can process - we told him as much as we felt we could. “Mommy and Daddy are very sad because your Leukemia has come back”. The words that came from my little 6 year old boy never cease to amaze me; “That’s ok Mommy, I’ll just keep fighting”. So that’s what we did. We fought, and we fought like hell. Our options were limited, yes, but we were never giving up on him – at the same time, we wanted him to have a semblance of life, with quality. A family meeting – something that all Oncology families face at some point, at diagnosis, and like us, when options are limited. I am confident in saying that I was a walking encyclopedia regarding Keian’s diagnosis and treatment, but while I sit here, I find myself fumbling through my memories and struggling to have them make sense. In reality and in the grand scheme of things, right now where I stand, they are all not that important. At the time, my focus was where it should be – researching every possible avenue. I guess the same could be said for right now – my focus is where is needs to be. Honouring Keian and attempting to build my broken pieces from within the piles of debris.
Nelarabine; a chemotherapy drug developed specifically for treatment of T-cell Acute Lymphoblastic Leukemia. This was our option; Re-induction therapy, which includes 30 days of combination chemotherapy, with the addition of steroids. Immediately following, they would cease all chemotherapy up to that point and focus solely on Nelarabine. Even though this drug was developed specifically for T-cell Leukemia, there was a mere 33% success rate with relapsed cases. Keian’s bone marrow at relapse was over 90% Leukemia blasts, even more than his initial diagnosis the year prior. The initial induction was able to reduce his marrow blasts down to 17% and with that information the hope was that Nelarabine would take the remaining. During this phase, we held on to hope more than ever. Many days this hope felt like a tiny shred of a frayed rope, but we always held on. There was discussion of a trip – we even went as far as meeting with Make-a-wish, so that Keian could ask that his wish to go to Disney World be granted. Not even a couple days after that very meeting were we told that Keian’s wish had been granted and that planning was underway. There seemed to be at least some happiness that trailed into the following days and many times it was easy to forget that life was a whirlwind of sadness. But, as easy as it was to forget the whirlwind that life had been thrust in our direction many times before, any solitude that we felt was ripped away in a split second. The Leukemia returned again – despite rigorous treatment.
Our options became even more limited, as this drug was what they considered his “last option”. We spend the days following researching and calling every single specialized institute and research hospital we could access. We begged, we pleaded, but despite this, there was an empty; “I’m sorry, there is nothing we can do. There are no further treatment that your son would be eligible for”. Desperation - There really is not one word that can better describe our feelings that were held on baited breath. Could there really be “nothing”? I couldn’t, nor would I ever accept that. Accepting that the impossible was possible was what I chose to accept. I asked for the burden of this sickness be placed on myself, I begged for my son’s life and for his childhood be happy and healthy. I asked this constantly and to this day, I would lay my life down to protect him. It was so hard to accept that no matter what I said, no matter how much I prayed, no matter how much I begged and pleaded, it was never enough. What can be done when they say that hope doesn’t exist? You hope more, you love more, and you appreciate more.
We were moved down to the Oncology Ward on the 2nd floor to await transfer to Canuck Place Children’s Hospice. Minutes blurred into hours, which then blurred into days. I had built up an obsession with his counts and numbers. They were always quick to remind not to focus on the science of it all, but after you’ve been told there is no longer treatment for cure, it becomes your biggest fear and it consumes every part of you. During those last couple of days spent in the small windowless room on 2B, I would wake to Leukemia blasts nearly double from the morning before – much higher, they said, could have triggered a seizure from which he may never wake. He rarely, if ever, complained or felt compelled to talk about anything other than the future he held so high.
From the moment Keian came into our lives, I appreciated and doted on every moment with my boy, tracing his sweet little lips while he slept, studying his fingers, counting his freckles and inhaling every inch of what made him Keian. These days only accentuated on that unbreakable, unwavering bond that he and I felt from the moment he was placed in my arms for the first time. He was my mini me, my silly side kick, my crazy nut, my loving, adorable little boy. Mine.
The morning of October 18th, we woke in the hospital room just as we had many days before, to our Oncologist in the doorway; “The ambulance will be here at 11 to take you to Canuck Place”. As the time neared, I could feel my heart slowly inching towards that uncomfortable spot in the back of my throat – a feeling I had experienced many times before this past year. As we packed our bags, I felt the urge to consistently direct my eyes towards the door. Shortly after, I saw a site that though beautiful, was enough to bring me to my knees. Nurses from both Oncology wards lined both sides of the hallway, leading from Keian’s room to the doors leaving the ward. This was the last time they would see Keian, this was their way of saying goodbye.
Ryan rode in the ambulance with Keian, as I followed in our car. I couldn’t see the road – my eyes had never seen so many tears. Ever. As hard as I have tried, I have yet to find words that exist in any language to describe the intense, overwhelming sadness that I was experiencing. Hand in hand and filled with love and fear, Keian, Ryan and myself took the first step over the threshold.