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”