19 December 2014

Take these wings and fly...

For the most part, being home those first couple weeks from Canuck Place were manageable. We spent most of our time indoors as Keian rested, but we did get out every now and then to visit places Keian loved. Given the time of year, many of our visits included shopping for Christmas ornaments and looking for Christmas lights. We made our annual Santa picture appear oddly normal; both boys all bundled up in their beautiful Christmas sweaters, the sweet sound of pitter patter from the feet of my two boys as they excitedly climbed to Santa's lap. Keian always believed in the magic of Christmas and this year, I was trying so hard to live in that magic.

I wish now that I could see, really see, what was happening right in front of me. I think looking back, that I was blinded by hope; having said that, I am thankful for that. I spent my moments speaking of the future, and believing my own words. There were moments where I would notice the changes in my little boy, but my hope built a wall. A wall of protection, perhaps.

As time moved throughout December, our time spent at Canuck Place began to increase. I felt desperate to alleviate his pain. By mid December, his breathing became increasingly difficult. He spent most of his waking hours, though he was rarely awake by this point, sitting in a recliner next to us in the small living room. There were times that he would ask to go to his bed. I never allowed it, but I did everything possible to keep him comfortable. Though I always held hope, part of me felt that if he wasn't beside me every moment, that he would slip away. I had to protect him. When I wasn't up heating his magic bags, I was measuring his next dose of Hydromorphone or Fentanyl. Many times, he would wake screaming in pain, absolutely petrified. At times, as quick as it began to work, he would require more. Once the pain began to take hold, he went from 1mg every 4 hours, to 4 mg every hour. This only increased as the holiday season crept upon us.

I would lay there night after night listening to Keian breath beside me. Each night, I would hear gasping and coughing, as he tried to catch his breath. By this time, he required help to get up from his chair. His bath time, once so very much enjoyed, was few and far between. I can remember one evening when he asked me to bath him. I slowly lowered him in the tub, but almost as quick as he was down, he was screaming in pain. My once free spirited, active little boy was now unable to dress himself, unable to walk and was now in extreme pain, in order to even breathe. We made our very best attempt to keep our normal facade; our Christmas traditions of baking cookies, pajamas opened on Christmas Eve and milk and cookies for Santa. Christmas morning snuck upon us, but that once excited little boy was living inside a hollow shell. His heart was ready to burst with joy, but his frail little body could not exude this. Like every year, I sat across from his as I snapped picture after picture with one hand and took video with the other; I can remember that I didn't feel like myself. It was as if I sat hidden behind what felt like a window. A window where I was watching another family; a family suffering. I never did finish that video like I did in previous years. It was during that time I saw what was staring me in the face all along. My boy was slowly being taken from me. A dull shine was now emanating out of what used to be a bright and shining star. He was being taken; ripped from us. His once beautifully glowing brown eyes were now glazed. His skin was covered with a distinctive grey hue and his once soft, kissable lips had seemed to sink further and further away.

For the few days between Christmas and New Year's Eve, Keian would wake for now only seconds. He would make small attempts to flutter his eyes, as his brother listened to Christmas specials and screeched with delight. On December 31st, we didn't leave his side for more than a few minutes. As the day progressed, his breathing became increasingly laboured. That night, as we tucked him in, things felt different. He was struggling; not only to breathe, but to stay with us. I laid beside him that entire night, almost waiting with baited breath. I was terrified. There is often talk of a Mother's knowing, but this was the first time I truly felt this. I remember asking him every few minutes if he was ok. I woke Ryan up at 4 am to tell him something was wrong. We needed help. Throughout Keian's treatment, he was never given the option of choice. Cancer invaded his little body and this body was getting so tired of keeping the fight. His heart had fought so very hard for the last 18 months and he was never prepared to give up. It was this never give up attitude that gave us strength when we most needed it. He asked us to keep him out of the hospital for Christmas; this was one promise I would have laid down my life to keep. I kept my promise.

Early morning on January 1st, we dressed Keian for what would be our last drive to Canuck Place. I can remember watching Ryan, as he went to help Keian up from the chair. I can still hear his sweet voice; "I can do it, Daddy". I walked ahead, only to look back to see Keian being carried by his Daddy, as he rested his head on his shoulder.

When we arrived, I pushed Keian in his wheelchair up to the nursing floor. They didn't have to say anything, their sadness was in their eyes. O2 monitors began flashing and Keian's struggle was undeniable. I had hoped that nearly a year later that my memories of this day would fade, but the same time, I want to remember every single heartbreaking moment. It has taken me nearly an entire year to write this and every word that I write brings me back to that day, to that very moment. I still can't fathom how it's possible to hold such significant hope, while having that deep knowing inside your soul. I may not know how it's possible, but I lived it. I felt it. By mid-morning, his oxygen sats had gone down to the low 60's. One of our nurses came in; "this is what happens when they're dying".

I was terrified to leave his side and I refused to drink because I did not want to have to leave to go to the bathroom. My numerous short bathroom breaks over the next couple of hours would be to vomit and run to return back to his side. I laid there with my arms around him, crying into his shoulder. Please don't leave me. No, don't leave. I struggled to hold his oxygen mask up to his mouth, but by this time they said it would not help. It wouldn't help him breathe easier, it wouldn't ease his pain. But yet, I still struggled to keep it there. At one point in the early afternoon, his breathing changed. I can't quite describe the change in words. The nurse happened to be standing beside his bed. "Your breathing changed, I need to get the doctor, this might be it". It?!? What do you mean, "it?!". His pain was no longer being managed; his faced was washed with discomfort and stained with my tears. I lay with him, stroking what was left of his hair. He loved this when he was little, and even more so when he became sick. The nurse explained that his pain would only become worse and asked if they could sedate him even more; they also explained that once he has this sedation he will no longer hear us. We were left scrambling in our thoughts. I told him over and over again how much I loved him; like if I said it just one more time this would not be my reality. It took every ounce of my strength to hold him while I sang his two favourite songs; Twinkle, Twinkle little star and You are my Sunshine. When Ryan heard my struggle, he joined in. Our last time singing to our boy. Our last time.

I remember talking to him that afternoon about Ryan's mom and how she was in heaven. Ryan knew what I was doing, but I didn't realize it at the time. I was telling him it was ok to go and be with her. How could I do that? I couldn't bring myself to say those words, but I thought them. Those words may not have left my lips, but they certainly could have. How can I just give up on my beautiful little boy? I reached under his blanket to make sure he was warm discovered he was soaked. His clothes, the bed, the sheets; everything. But yet, he wasn't warm. He was slipping away.

Ryan and I lay there holding him. I hadn't slept since the night of December 30th. I had one of my arms cradled around his waist and one grasping at his shoulder, while my cheek was pressed gently against his. His breaths were short and shallow, but with each breath, the rattling became louder. I will never forget that sound. As Ryan began to rub Keian's leg, he noticed the colour change. One moment it would turn purple and the next red. The nurse stood vigil. His blood is pooling.

Keian hadn't opened his eyes all afternoon. As the rattled breathing got louder, his chest would rise and his tummy would regress. I frantically began pushing the button to administer his pain meds. I can't see him in pain anymore. I am dying. Please, please end his pain.

Keian took a huge breath in, opened his eyes and reached out into the air with both arms. As we laid them back down beside his little body, I placed my hand upon his chest. His little heart. His heart full of so much love. On January 1st at 9:15 pm his sweet, beautiful heart beat for the last time...

"Close your tired eyes, relax and then Count from 1 to 10 and open them All these heavy thoughts will try to weigh you down But not this time Way up in the air, you're finally free And you can stay up there right next to me All this gravity will try to pull you down But not this time When the sun goes down and the lights burn out Then it's time for you to shine Brighter than a shooting star So shine no matter where you are"

1 June 2014

Still fighting, still hoping - Part 2

The first day at Canuck Place seemed surreal – even the thought of moving over there in the days preceding brought a whirlwind of desperation. We had been there for a short “tour”, but actually moving there to “live” was dreaded. The grounds were very inviting, the house had a peaceful atmosphere, and the care support workers helpful and compassionate. Despite all that this did to help in our transition, you couldn’t help but notice the beautiful mantle in the main entrance foyer. This mantle is to honour and remember those that have passed and forever remembered as a part of the Canuck Place family. I can remember riding in the elevator. The elevator windows are adorned with hundreds of children’s’ names that either call this house their home, as their parents receive respite from their care, or those children that have only briefly made their mark in this world. My focus was drawn to the names of those precious children who we shared our time with, as we all struggled to help our children through what we had hoped to be life-saving treatment. Those children, whose parents were devastated beyond words, when they left those doors without their beautiful heroes.

We arrived shortly before lunch for our official welcome. Our room had large windows that covered both of the outer walls - we were on the corner, overlooking the play area and garden. As we were settling in, the nurse approached me as I sat on my bed. Ryan had gone with Keian upstairs to the 3rd floor to our “family suite” – a suite assigned to our family for friends/family/caregivers to stay in with Joren. She stood for a few moments and gazed in my eyes. I immediately began to cry. I apologized, although I know that many broken hearts have seen this very room. “I know, I’m so sorry”, she said as she put her hand on my shoulder. Though the timing was horrible, in reality there is no good time to have me look at paperwork to organize his official admission. One of the first that I had to sign was an updated do not resuscitate order. The first time this option was brought to our attention was back in August, when it was discovered that Keian was refractory to treatment. Throughout his treatment there were many decisions that were necessary on our part. Looking back, I know that those very decisions are one of the things that helped him to remain strong while he fought. The do not resuscitate order was the hardest decision that, I feel, we had to make. Keian’s cancer was incurable and now, untreatable and unmanageable. I still have the stack of papers that we were given to inform us of the possible outcomes and complications that could come with rising leukemia counts. Quality of life, versus quantity? Of course, all of us as devoted parents always want their children to be happy, healthy, successful and loved. I often feel that if love could have saved Keian, he would still be here in my arms. He had been with us 6 years. For the first 5 of those 6 years, we had everything – happiness, health, love and the beginnings of a complete family. How could we possible choose to remain with only the memories of the previous years with Keian? This, amongst many others that we faced during the 18 months he fought, are decisions that no parents should ever be faced with.

He absolutely loved the house and felt very comfortable coming and going on his own. He became incredibly attached to a freshly hatched chick that was on display in the schoolroom. He was such a sweet little bird, with a very gentle nature. Keian aptly named him “Chirpy”. He stood out from the rest with a darker Mohawk like fuzz on top of his head. He would cuddle with him many times a day and could never walk by the room without running in to check that he was ok. While we now have a hand painted picture of Chirpy done by Keian in our possession, at the time, it was hung proudly in the hall just outside Chirpy’s temporary home. I was concerned with his reaction when it came time for Chirpy to be returned to the farm, but once again, Keian taught me to never underestimate his understanding. “He’s going home to be with his Mommy again – he’ll be happy”.

During the first few days at Canuck Place, Keian’s leukemia counts continued to rise, reaching a white blood cell count of 175. He had been on what they considered “palliative low dose chemotherapy”, with their hope being that it would slow the end of life process. End of life – One of the very things I saw written on one of the papers that required my signature. Though we had been told this enough to have it engrained in our minds, it seems like an entirely different context when you see it in written form. I could have seen this a million times, and it still wouldn’t have swayed my hope and devotion towards Keian. Despite palliative chemo, his counts continued to rise – it then came a time where I took matters into my own hands. How could I just sit back and watch my baby begin to cycle into the end of his life? During his treatment, I spent numerous nights researching for treatment, alternative treatment, natural treatment and even ones that were in the early development and testing stages. What is different about now? Nothing. He was still here, he was still fighting. While they may have explained that nothing more could be done to slow or stop the progression, I was not about to lay my own child’s life down to chance. If I was going to go down, I would go down fighting – Keian taught me that.

I called Children’s Hospital to speak with our Oncologist – I nothing short of begged her to add in another drug that had shown promise in Keian with prior treatment. She was very hesitant. Not because this drug would do him more harm, but because she was concerned it would be for nothing. After much deliberation and fact research, we asked for a family meeting to discuss the addition of cannabis oil. With everything, there are facts and fiction – though hard to sift through the two, essentially it comes down to whether it would harm or enhance. Their experience with cannabis oil was minimal, but they were completely on board; so much so that they were willing to help us acquire a license. If anything, I explained to them, it would help with his increased pain. Our intention was that the addition of methotrexate would give us time to administer the cannabis oil and allow it time to do what it was going to do. Cannabis oil has shown promise in many other cancer cases – though we never expected it to cure, I can say that the hope was always a prevalent thought.

For anyone that knew Keian, they knew his love of art, expression and creation. This became especially so when staying at Canuck Place. Many nights, we would wake to find him sitting at the nursing station creating masterpieces while we slept. He would spend hours at a time behind closed doors with volunteers as he created gifts for me and Ryan. We have often reminisced that he may have had insight into his final days. He created original Mother’s and Father’s Day cards, birthday cards and gifts, I love you notes – all irreplaceable, especially now. Everything that has ever been created by Keian’s hands are forever protected, appreciated and loved. We have hand painted pictures hanging in our kitchen and laminated drawings displayed on our fridge. I am proud to display my two boys’ art work, together. Though at this moment I feel no sparkle in my heart, I can always be reminded of the sparkle that he emanated by these drawings he left behind.

Every year since Keian was 18 months old, we had gone as a family to the pumpkin patch. In 2012, a few months following Joren’s birth and Keian’s diagnosis, we went for the first time as a complete family. This year, Joren was walking and Keian was weak. As we walked in, I had Keian go ahead with Ryan and Joren so that I could take a picture. I’ll always cherish that picture. The suns beams are radiating directly on my beautiful family. As we jumped on the hayride out to the farm, the music began and the man and woman that sat in the front started to sing as they encouraged us to sing along. I mostly sat quiet, as I stared at my family. I need my family, I need both of my boys. I could hear the words “You are my sunshine, my only sunshine………..” and I immediately fell apart. I was trying so hard to be strong. This song, I sang to Keian when he was little. Never did I know that I would now be in the position where on a daily basis I would be saying to myself “…..Please don’t take, my sunshine, away”. Ryan looked in my direction and then reached out to hug his boy. Understanding without words – it happened a lot this way.

Prior to admission, Keian was incredibly excited about Halloween, and that didn’t change. He had been going back and forth between costumes, but once we spent a fair amount of time trying them on, he chose Batman – of course a superhero, just like our boy. Aside from the first 2 years, when we chose his costume ourselves, he had always chosen some sort of hero – police officer, Iron Man, Green Lantern, Superman and his very own Kaptain Lasers. He asked if Joren could be his sidekick – Robin. I always knew both of my son’s would be heroes, but this way, they would see it with their own eyes. Halloween was a busy day for him. He had a visit from a fellow hero – Batman himself. He was presented with a custom made red serge and Stetson and accepted into Troop 15 as a honourary member. What was even more incredible about this is that his troop was stationed out of Saskatchewan while they completed their training. His body was very tired, but he managed a quick interview and thank you to his troop mates and the amazing men that made his dream a reality. We all believed that one day he would be able to meet these men, while proudly adorned with his newly acquired uniform. Maybe, one day, he would be one of those men stationed out of Saskatchewan while he completed training. A dream perhaps. Within the first week of the introduction of cannabis oil, his leukemia blood count began to decrease. Do we know what caused this? We had a thought, but nothing could be proven scientifically. We do know that after 2 weeks solely on methotrexate, there was minimal change. Could it have been cannabis? Could it have been a combination of cannabis and methotrexate, or could it be the miracle we had all been waiting for, for such a long time? For the proceeding couple of weeks, we continued to see a decrease in his counts – something that surprised the Doctors treating him. It was something they have seen, but not that often - especially with Keian’s advanced disease. From the day we arrived, until the end of October, he was on a seemingly downward trend – he began to look very ill and some days would not even wake. The first week of November, however, things changed. The colour in his cheeks returned in some degree and his energy and appetite increased. By this time, his blood counts had gone from 175, down to single digits.

We spent many of our days out on passes – whether going to the aquarium, a trip to the Halloween train in Stanley Park, out for lunch, to the mall or just to get away to our suite that we had called “home” since August. Many of these outings were spent shopping for Christmas decorations and ornaments to make an extra special Christmas, wherever we may be. Keian no longer required consistent nursing care and was therefore rarely on the ward for “treatment”.

During this time, we were able to participate in a couple of their weekly scheduled outings – daddy and son went to the theatre to see Thor: The Dark World. Ryan told me that Keian had fallen asleep briefly a couple of times during the movie, but was excited about getting food from the concession before the movie and to play in the arcade after. As much as I wanted to be part of the night, I also wanted things to continue the way they always had – daddy and son and mommy and son dates were something we cherished regularly. The last movie Keian and I saw on our own was Rango – we had gone for a mommy and son date out for lunch and to a matinee. This was something we regularly enjoyed as a family, especially at the drive in theater that he loved so much. He would always come and cuddle with us up in the front of the car with big blankets and pillow while he munched on his popcorn – he had a true, fanatical love for popcorn, usually double fisting, as he shoved as much in his tiny mouth as he could. His love of movies poured into every weekend before he was diagnosed, and continued during treatment, albeit family movie nights in became much for frequent.

During Keian’s admission, Ryan would “celebrate” his 34th birthday. How could we possibly celebrate anything with the possible pre-conceived notion that this would be one of the last celebrations that would include both of our boys? Keian had asked me if we could bake a cake. There were quite a few “culinary experts” that ensured that the families were fed, but one in particular had offered to spend the afternoon with Keian to bake his daddy’s cake and to decorate the area surrounding the table we frequented in the dining room. He was so proud. He loved doing things for others and loved making them happy. As odd as it sounds, we always felt taken care of when Keian was around – the way he doted, the way he loved. It was an extremely emotional night for Ryan; Keian may not have understood all the reasons that made Ryan’s heart happy and break at the same time, but he stayed close as he enjoyed his cake.

During the initial months of Keian’s diagnosis, we had been given information about Make-a-wish. I’ve seen it mentioned many times before in articles or on TV, but I, unfortunately never took the time to understand the true meaning behind it. Much like his diagnosis; I knew of Children’s Hospital and knew children there were sick. Never would I have ever realized the devastation that families are faced with on a daily basis. Prior to July 2012, I can honestly say that I rarely, if ever, heard of a child being diagnosed with cancer. Then, I was thrust in to being the Mother of a boy with cancer and things became abundantly clear. We were now a statistic - one of hundreds of families that had children diagnosed with cancer every year at this hospital. Make-a-wish grants wishes to children that are facing a life-threatening illness. Prior to his last relapse, we had made the decision, along with Keian, to wait until the fall/winter following his transplant; this would allow his body time to heal. Once faced with relapse in July 2013, we were encouraged to start thinking of a much sooner timeline. For the first 2 weeks, the mere thought was pushed back, so that we could focus on a strategy for the fight we had ahead, as well as trying to physically and emotionally process the information we were being given with regards to his progression, outcome and as much as it was hard to hear at the time, his life expectancy. Keian always spoke of going to Disneyland and it was always in our future plan; nearly from the moment he was born. Upon meeting with our wish grantor, he spoke of Disney World and the incredible opportunity to stay at Give Kids the World. Keian and I sat eagerly as we looked through pictures and he was instantly showing excitement. This was it. This was his wish. After losing out on so much over the past year, he was finally allowed to be a carefree kid, even if just for a short time. Within a few days, we were told that Keian’s wish was granted and it was finally his reality. It wasn’t long after the plans had already been set in motion that his health declined and the Leukemia came back again for a 3rd time. We were told that at this time, he would not be cleared for travel and plans had to be set back. Over the next month, we didn’t give it much thought, but once we moved over to Canuck Place, it became evident to them that the trip would never happen. We never gave up the hope and had high hopes to prove them wrong. We were then approached by Make-a-wish to make an “alternate wish”. I left this up to Keian, as I felt that should I take the lead in deciding such a thing that I would be accepting defeat and letting him and his dream down. His wish – a Carnival Party.

A couple days before the party, Keian began to experience intense pain in his shoulder, accompanied by rapid heart rate and breathing. They did their best getting this under control, but for the first day or so, it seemed impossible. He was either screaming in pain or drugged heavily with pain killers – there was no happy medium. On the day of his party, he woke up in unbearable pain. With a long night ahead of him, we had hoped that it would miraculously disappear. He deserved at least one night to enjoy himself through all of the suffering. Unfortunately, this was not the case but still we left that night in a limo – the first time he had ever been in one. He slept the entire way to the party, and barely woke as I attempted to get him out of the car to join the crowd. It was incredible. Within a week, Make-a-wish had planned and arranged a “rush wish” and the Capture Lab at EA Sports was transformed into a full blown carnival; complete with magicians, clowns, rides, games cotton candy, slushy’s, hot dogs and mini donuts. The night was difficult for all of us there, as the reasoning behind this wish could indicate the worst – but more so for Keian, as he required numerous pain management sessions throughout the evening. It didn’t stop him from being a kid – at least as much as his beaten body would allow. He rode on rides with friends, he played games, won prizes, ate cotton candy and made memories. Though I am not in denial, it is so hard to accept that these memories that I speak of so fondly are some of the last memories of Keian that we will ever have.

The diagnosis surrounding this pain was never clear. After numerous x-rays, it was determined that Keian had pneumonia, which would explain the pain in his chest and shoulders. After a week of intense antibiotics to treat what they felt was an infections his pain began to subside, albeit temporarily. During the following weeks family meeting, they told us that they felt Keian was “too well to stay at Canuck Place for the time being” and wanted to discharge us until it was absolutely necessary to come back. In other words, when they felt that there was both a decrease in quality and quantity of life. There would be no looking back. When we arrived on October 18th, he was given 2 weeks, with the unlikelihood of living until Halloween. It was now the second week of November and they were discussing discharge. They were abundantly clear that even though Keian appeared to be retaining his strength and his fight, in no way did his outward appearance reflect what was happening within. We chose to focus our energy not on what they said will happen, but on what we felt could happen. Just as Keian did every moment, we continued to fight, continued to hope and continued to breath.

I was so incredibly scared– maybe even more scared than the day we arrived the month prior. Even though the last 16 months had been filled with many moments of fear, we could not allow fear to affect our mindset of hope – with that being said, I also knew that if we left and had to come back, that next time, we would be leaving without sweet, beautiful Keian. Without our son, without Joren’s big brother, without our shining star. For time I should have been incredibly thankful for, it rather became more of a dreadful “what if”. I think looking back on his diagnosis and treatment there will always be “what if”, or “ what could I have done different?” Why didn’t I know he was sick? Why didn’t I catch it sooner? Why couldn’t I save my boy? Why did this happen to our family? What did we do wrong? I do know that I did the best that I felt I could at the time and I can only hope that my boy would have been proud with what decisions and obstacles we were faced with.

As I closed the door and Ryan began to drive away, I felt my chest tighten, as my eyes filled with tears. Keian leaned against me in the back seat – I squeezed his hand and said “I sure love you, sweetheart”

22 May 2014

Still fighting, still hoping - Part 1

I can still recall as we walked in to the clinic on July 29th, 2013 for blood work. The excitement he felt that it was finally over, as the next day he was to get the only physical evidence remaining from his fight removed– his central line. There was talk of camping, adventures, our future as a family of 4, Disney World and a spectacular celebration that would showcase a true hero, my beautiful son. I remember how many people stopped us to give Keian a high five and boast about how incredible he was looking. They weren’t wrong – he looked well. He was so incredibly proud. Even the week prior, he held his head high as he pranced around the hospital delivering beautifully hand- made thank you cookies to the very persons that had a hand in his recovery. This was Keian – one of the many, many attributes that made him the special young man he was. One full year of treatment to include; relapse, radiation, meningitis, bone marrow transplant, numerous hospital stays, infections, complications, MRI’s, CT scans, surgeries, chemotherapy side effects and graft vs. host disease…it was almost over.

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.