Sunday, 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”

Thursday, 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.

Sunday, 11 August 2013

Celebration, Devastation and Determination...

There has been a lot that has taken place since July 1st, more than we expected and even wanted. Since there has been so much, I though it best to concentrate on the important events to bring everyone up to speed.

July 1st - On Canada Day, despite still technically being in isolation, we still managed to celebrate in our own little way. We decked out Keian and Joren in matching Canada Day Roots shirts and gave them flags to wave. Keian was happy to have a flag and Joren, well, was happy to have anything to shake around. The problem was trying to figure out how to celebrate while limiting Keian’s exposure to the general public. We ended up in Cloverdale to watch the fireworks from the car. We found the perfect vantage point just in time. Keian stood on the passenger seat and stuck his head on the roof of the car. It was Joren’s first experience with fireworks and he watched in drooling awe. I should mention that we also treated ourselves to maple leaf cookies, you know, in the spirit of the day.

July 9th - This was an extremely important date for us. Besides 4 days short of the 100 day post transplant mark, that day, Keian would have a bone marrow biopsy and a lumbar puncture to determine if he was still in remission, Additional samples were taken for another Chimerism test. The preliminary results of the LP came back as negative; so far it was 1/3 of the good news that we were waiting for. They informed us that the bone marrow was still technically in remission as it was below 5%. What we didn’t know was that it had gone from .41% post transplant at day 30 to 4.7% post day 100.

July 15th - I went back to work; taking the first steps to getting back to a more normal family life. It was emotional for all, but it reminded us of our strong family bond and that we were never truly apart.

July 16th- Two items were mentioned during his clinic visit. The marrow showed abnormal cells, but they didn’t match his original leukemia cells, nor did they resemble normal cells. It was assumed that they were premature white blood cells from Joren. Chantal and Keian were also told that his CVC would be taken out on July 30th; he would finally be wireless.

July 18th - The final third of the long awaited good news came on this day. Chimerism tests confirmed 100% Joren.

July 22nd - Chantal and Keian delivered some amazing Thank You cookies designed, and donated by Sherrene at The Sugar Tree. Chantal and I had noticed Keian hadn’t been eating for the previous 4 or 5 days and that he had quite a few bruises on his legs. This immediately caused concern, as that was one of the physical symptoms that showed there was a problem at his initial diagnosis. He had been very active, which gave a reasonable explanation to push those thoughts away. His WBC were up this day to 8.5; nearly double what they had been the previous week. This is hard to judge, as we have seen his counts hit the extreme in different directions. Chantal questioned this and they assured her there was nothing to worry about. “These numbers are completely normal and there is nothing for you to worry about. You’re just not used to seeing normal”. We discussed Keian's graduation from treatment and all that it entailed and left feeling relieved. Perhaps even a little confident.

Monday, July 29th – This started off like any other day. We were beginning to relax into a somewhat normal life, reminiscent of what we had prior to Keian’s initial diagnosis. Things seemed familiar, and we both let our guard down. Here we had a kid who had fought so hard for so long and walked away from Chemo, radiation and a bone marrow transplant with a smile. I was starting my third week back at work, while Chantal and Keian would go in for Keian’s Monday appointment at the Oncology Clinic. The original plan was for me to take the 30th off to be with Keian when he finally had his CVC removed. As the saying goes; “The best laid plans of mice and men often go awry”. Chantal and Keian had just left the oncology clinic, and were about to leave, when a nurse came running towards them and told them they had to come back, something was wrong.

The Leukemia had returned, stronger than ever. This time around, the blasts were at 84% instead of the original 80% and had grown so quickly compared to before. The relapse happened in the marrow, as well as a few cells that were proven present in the CNS. We were shocked and devastated. He looked so healthy, just like how he used to be. How could we have guessed that this monster was once again stirring inside of him?? I left work immediately after receiving Chantal’s call. I was scared and numb at the same time. Just when we thought that we were nearing the light at the end of the tunnel, we were pulled back to darkness

Without going into too much detail on this post; we were told that the chances of a cure were slim to none. We still hold onto that chance and will never let go. The plan is to get him back into remission and start him on Nelarabine, as a last resort in an attempt to keep him in remission. It works for roughly 33% of patients and in fact the Doctors told us of 1 patient, who had relapsed after a bone marrow transplant in their CNS has been in remission with this drug for the last 7 years. They also do not expect a long term remission for Keian. We believe, hope and pray otherwise. He has fought so hard and grown up so much this past year and we will not see his efforts left to be in vain. It has definitely been emotional for everyone who has ever known Keian, but it’s especially difficult to be at Ground Zero. We are thankful for the immense support we have received so far, in the forms of visits, meals, letters and more. Without you, this 3rd, and hopefully final, round would have been almost too much to bear. We are down, but not out. We do not give up, we endure. Keian’s blasts are currently down from 84 to 0.80 and we pray that the number reaches 0. Once again, we become familiar with an IV, cramped quarters and that feeling of utter helplessness as we wait bedside for his daily blood counts. Keian states that he’s done it before and will do it again. Some days, he seems bored, sad and angry. I don’t blame him; once you get a taste of freedom, it’s hard to get locked up again.

August 8th - Elaine Yong from Global BC came to interview us at the hospital, which aired at 6pm that same day. Although we share Keian’s journey on this blog, and through social media, it meant a lot to see his story reach out even further, just as he has touched so many with his strong will and brave heart. You can view the interview below.

I wanted to end this post asking you to help us keep up this fight.

You can join in his fight by following us on Twitter

Alternatively, you can join us on Facebook at Team Keian and Lets pray for Keian

We have never had an easy time asking for help; I think it's difficult for anyone. But, in saying that, we know we can't do this alone. If you would like to donate to Team Keian, you can do so at Team Keian vs. Leukemia Round #3

Monday, 1 July 2013

man of steel, boys of hope, hearts of courage.

Today we embark on a new month. I can’t believe it’s already July – along with that comes hot weather, blue skies and the realization that we’ve been kickin’ ass through Keian’s journey for nearly a year now!

On June 4th, our little baby boy celebrated his 1st birthday! We had a nice quiet birthday for our little spitfire ginger at Queen Elizabeth Park with just our small little family. Throughout this last year, he has grown into such a goofy, happy, sweet boy. He's a spitfire alright - just what you'd expect from a ginger, and just as clumsy as his Daddy. We've had falls and bangs and bumps and LOTS of bruises. He isn't just walking, he's running...everywhere. He's been a huge blessing - always smiling and squealing with delight. I love how Joren and Keian are so different from each other, yet I still see so many similarities. Keian had so much fun at the park and Joren couldn't take his eyes off of anything Keian was doing. He bombed around the shady trees in his ATV, even crashing head on into a tree. Of course once we made sure he was ok, we all had a crazy laugh. I wish I had it on camera when it was happening – one of those typical “Hey, Mommy/Daddy look at what I can do” …he brought a whole new meaning of “keep your eyes on the road”. He’s gotten a few practice runs in the SUV in the empty hospital parking lot the last couple of months, as well. To this day, I’ll always remember when my Dad took me “driving” at his age. Keian wanted me to make Joren his cake, just like we did with him when he turned 1. With limited supplies in this apartment, I was pretty happy with how it turned out. Joren definitely got dirty – cake smash on the tray! He seemed to like the icing best, but has since made it pretty clear that he loves chocolate.

For anyone that knows Keian, you know his obsession with Superheroes. He’s been waiting for the new Superman movie to come out for what seems like forever. He won’t be allowed in public for a while now – how lucky for us was it that The Man of Steel was playing at the drive-in?! After a call to his Oncologist, we were given the ok to take him out. What a great movie, what a great outing! He even managed to keep his eyes open for the entire show! Though I could have done without the dead battery that came with it, the night was pretty wonderful! Die-hard Superman fans, Ryan and Keian couldn’t leave home without their t-shirts to show their love.

Finally, the chicken pox isolation was lifted! He and all the other children that had been exposed were given the all clear. Though Keian is still in transplant isolation when entering the hospital for his clinic visits, it’s much less stringent than a combination transplant/varicella. They have also been decreasing his cyclosporine levels and hope to have him off this by around day 100. Today marks just less than 2 weeks before he sits at day +100 post transplant. On July 9th, he is booked in for a bone marrow biopsy and lumbar puncture to check for any residual Leukemia and to see how effective Joren’s bone marrow has been this past 2 months. I’ve been walking on egg shells with the mere thought of this. We’ve been told, which seems like numerous times now, that this is his chance. There are no more chances, no more options, and no more treatment available. I like to fully believe that we don’t need anymore chances. He’s fought hard, he’s fought well and he continues to do so everyday. Though I believe it, it’s hard to get to the point that it’s all that naturally repeats itself. It takes work and strict dedication to repeat this to yourself every waking minute. I have faith in Keian and his determination to beat this.

Just as all of Keian’s peers are finishing school for the year, Keian will be somewhat beginning. Starting on July 14th, he will be in the BCCH school room for a couple of hours a day for the month. He hasn’t had a scheduled routine with school work, though has had one-on-one time with the teachers that are at the hospital. I’m hoping that while he will not be able to return to school until next year, that he will ease into a more natural, classroom guided learning style. He’s an incredibly bright, well-versed 6 year old. Sometimes it’s hard to see him as that. I have to learn to give him room to grow, room to grown into the incredible little boy that I know he is. It’s hard to let him go, even a little. After this year, I haven’t wanted to let him out of my sight, for fear that if I wasn’t watching, just for one second, something would go wrong. I’ve realized that he needs that growth and some of that, he needs to do on his own. He’s ready, I know it. This is just something that I need to work on and allow myself to grow within myself. It's hard to think of yourself. As parents, we are engrained with the needs of our kids.

July will also bring on some pretty emotional days. On July 15th, Ryan will return to work. I know that he will be in great hands and that they will help him ease into the transition that we all know will be extremely difficult. Though Ryan and I will have our own emotions on this day, I am concerned with how Keian will wrap his head around things going back to “normal”. “Normal”, now that’s a word that brings on a lot of confusion for me. I’ve noticed that many people assume that now that Keian is in remission that things go back to normal. What is normal anyways? This past year, normal for us has been all about adjustments, sleeping in someone else’s bed with sheets that smell like chemicals, sickness, crying, kicking and screaming, breakdowns, strain, stress, eating, eating, eating and eating. For me, normal would be for my little boy to remain a little boy and to be able to live the rest of his life without worry or fear. I am determined to make this his “normal”, regardless of what may or may not lie before us. Even with his brother’s bone marrow donation, we still face a 50% chance of relapse for the next 5 years. On top of this, we need to continuously look for any signs of a secondary cancer, which is known to accompany the treatment that he endured to allow transplant, as well as potential physical/neurological damage caused by the chemo and radiation. Despite this, we keep our chins up and take this step by step, day by day. Throughout his journey we have made sure to instil the fact that he possesses an un-nerving strength and courage and is loved beyond measure. I feel like I’m looking at myself from the outside – I think that’s why I feel that I can finally begin to process everything that’s been our life for the last year. There are a lot more emotions than even I expected that surround this realization. When you’re living the life, it’s just what you do. You live it from day to day - even hour to hour and minute to minute some days. You’re not given a choice; it’s just what you do. This is something that has changed me forever. It already has. I have learned the importance of patience and understanding deeper than I ever expected. I have learned that sometimes, people just don’t know what to say. I have learned how to let go and how to hold on, most importantly, I’ve learned the difference between the two. It’s time to take his lead and learn to live.

Thursday, 30 May 2013

Never give in, never give up...

The last blog update was the same day that Keian had his Bone Marrow biopsy and LP. Not only were these to ensure remission after transplant, but to also confirm whether Joren’s cells were successful in finding a home within Keian. Throughout the day, he didn’t have much energy, nor did he have much of an appetite. The nurse that evening noticed that Keian seemed tired and therefore decided to do vitals at 11, so that he wouldn’t be woken at midnight. A temperature. Yes. I figured it was nearly a blessing in disguise that they were done early. This is one of the very things that can change on a dime – temperature usually equals a problem, sometimes more minor, but sometimes life threatening. It was the very thing that alerted us to his Meningitis diagnosis back in February. Following the typical fever = antibiotics regimen, the temperature still stuck and once again blood cultures returned negative for growth…wonderful. At first I used to think of this as a good thing. If blood cultures were negative, things were ok, until I realized it could indicate a hidden infection. His counts were coming in nicely at this point, so if it was infection, they were hopeful that his immune system would be able to attempt a save of somewhat. Discharge that was originally set for the Thursday was delayed. 2 days away from being free – Keian was so disappointed. It was partly the fact that we had been making such a big deal about getting out of there and being a family under one roof. We figured in the future, it would be best to not be as open with a definitive discharge date until the actual day had come.

It was apparent by the next day that in fact it wasn’t an infection. His face was seemingly flushed the day prior with red sunburn like blotches and by the next morning, his entire upper body was covered in a bright red, rough, raised rash. There was speculation that he may be getting GVHD (graft vs. host disease), but they wanted to wait another couple of days to watch the pattern of the rash development, as it wasn’t the “typical” textbook case. Textbook case? Isn’t that funny? You’d think by now they’d realize that Keian has never presented with anything by the book. He’s original and he has never done what he’s supposed to do with his diagnosis; it’s been like that from the very beginning. Always responding to treatment in the opposite from what they expect. Having side effects they never expected and even when they do happen, have them be something they’ve never seen before. After he was examined by Infectious Disease, Dermatology and at least 4 additional Doctors, it warranted a “possible GVHD”. By the next day the diagnosis was confirmed. The course of treatment they told us was high dose steroids, which isn’t effective in all children. GVHD in itself can be life threatening if not under control. They told us that if he didn’t respond to the steroids, there was one other thing they could add in the mix. One, just one. When I asked what happens if that didn’t work, I was told that it gets “complicated”. But, after 3 days on the steroids, we began to notice the rash getting darker and smoother. It was working! 5 full days of the high dose and then the weaning began. It took nearly 10 days for a full wean, but I am so happy to say that last Friday was his last dose and the rash is nearly completely gone! There is still residue from when the skin was peeling, but it doesn’t look like much more than dry skin. Unfortunately, GVHD can rear its ugly head at any time and can affect many things. Keian was diagnosed with Grade 2 skin GVHD, which can flare up again tomorrow, years from now, or never again. Many things, like the sun, scratching or any other type of irritation can cause it to flare up. We can only be careful and diligent.

Although the GVHD diagnosis delayed his discharge by 2 weeks, we are finally out! You heard me, but hear me again, loud and clear. WE ARE OUT! You have no idea how many emotions come along with this all. Technically, Keian is done treatment. Although we return to the Oncology clinic a few times a week for blood work and possible transfusions, this is it! Honestly, it scares me to hell to even mutter those words across my lips. The BMT was Keian’s “last” chance, but we are hopeful that this is the only chance he’ll need! Discharge day also brought results from his bone marrow biopsy, LP and chimerism test. I don’t think we’ve had a bigger smile than we did that day. Not only did his bone marrow and LP come back clear of leukemia indicating he was still in full remission, but the chimerism showed that it was 100% donor cells!!!! Joren’s cells were now inside Keian and doing their job; creating themselves a new home and beginning the huge feat of making his new immune system from scratch. This is the best case scenario and exactly what everyone was hoping for, not to mention that it’s definitely what he needed!!! What we hope for is that if there are any residual leukemic cells left that are hiding, that the new immune system will recognize them as foreign and beat them with a sack of potatoes until there’s nothing left. The type of leukemia that Keian has is known for hiding, which is the very reason why it was necessary for Keian to receive the radiation, as well as the myeloablative chemo prior to transplant. All of this in the hopes that it eliminates the possibility of a relapse. Every day that passes increases his chance of a permanent cure. So far, we’re at day 55 – post transplant!

On Sunday night, we received a call from the Oncologist to say that his cyclosporine levels were in the toxic range and we needed to come in the clinic first thing to have the levels taken again. At that point, he seemed well, and wasn’t having any symptoms, but it was discovered he had yet another fever. It’s pretty redundant – when this happens, it follows a certain protocol. Cultures are taken to test for infection, antibiotics are started to ensure that it cannot grow further and Tylenol is given to take care of the fever. This time, they wanted to see how the fever progressed, and therefore Tylenol was skipped. After 3 days of IV antibiotics and negative cultures, he broke his fever last night! It was getting harder to wake up every hour to take his temperature and to make sure he was easy to wake, with no additional symptoms.

Today, we received another call saying his cyclosporine levels were high again today and to hold his dose until they tested again tomorrow. Keian is on medications that will help to prevent certain infections, one of which is fluconazole to prevent fungal infections. Apparently, in some kids, this can sometimes interact with the cyclosporine and cause high levels. I have a feeling there will need to be a lot of adjusting of his dose throughout the next couple of months. They hope to have him off cyclosporine as soon as possible - it may very well be the one thing that is helping his body to accept Joren's cells, but it is also suppressing the new immune system from forming completely (this can take up to a year from transplant).

He has exceeded all expectations despite all that has attempted to stand in his way. He has been through so much and has grown up beyond his years. Luckily, he hasn’t lost everything that makes him Keian. He’s still our goofy, loveable and caring boy that everyone has fallen in love with. It’s come to that time that he deserves. Time to be a kid again; to play, explore, discover and to build upon that brotherly bond that was seemingly pulled from him and Joren upon diagnosis. We can see it strengthening already. The first night at our Vancouver apartment, amongst the chaos of unpacking, we saw Keian and Joren playing together in the living room. We knew at that point that no matter where we are, as long as we are together, we are home. We’re back to sleeping within the same four walls, albeit in beds that are not our own. The furniture is not ours, the style is not ours, but the laughs we share are. The family hugs, kisses, tickles and squabbles are all ours. That’s what matters.

Keian’s journey is far from over, but it has taken on a new challenge – to live. To cherish all we took for granted. To accept that some things cannot change, but to be hopeful and to never give up. It’s an incredible journey that we, as odd as it may sound, are all lucky to be able to share with Keian.

Monday, 6 May 2013

Mommy's miracle...

I didn’t realize it had been this long since I did a blog update. The days just seem to fly by and by the time we sit down for the day and actually have time; we’re so tired that there is no energy for typing. I was joking this morning about how I got 3 magazines over a week ago and every night that I’ve been over in the trailer I try to look through them and then I end up falling asleep…I don’t think I’ve made it through even one! We’ve come a LONG way in 15 days since our last update. Keian moved over into what they call step down, last Wednesday. Once his ANC reached .50 for 2 consecutive days, he was moved out of the small isolation room over to a larger regular room. The same precautions stay intact, only gowns are not necessary. Our hands have gotten so raw they are nearly bleeding by the end of each day.

Keian has once again blown us all away. He has surpassed all expectations, literally. The day he moved into step-down, he was up jumping around in his bed and walking in circles around the ward almost non-stop for 30 minutes. This all coming from a boy that was continuously bed bound for nearly a month. At first glance, there is no way of telling how sick he truly is. Other than his beautiful bald head, he looks so healthy, so vibrant and full to the brim with vigor and grunt. Yes, I said grunt! I’m talking about a kid that is already wrestling with his Daddy on the bed, one that is jumping from his bed to ours and one that has no problem with moving on a dime. He is literally a miracle in the making. His blood pressure is now under control, but he still requires daily medications to keep it that way. We have seen no sign of rash in the past 4 days, which means that his engraftment syndrome has likely diminished due to the steroids. They’ve switched him onto oral meds to get him ready for discharge. We have already been given a tentative date of discharge to be this Thursday. It’s almost surreal. We expected to be here for close to 2 months, but we are leaving 3 weeks ahead of schedule! I’m over the moon excited, but there is always that little voice inside that is cautious. Yes, I’m scared. Of what I’m not completely sure. We will still be coming back here 3 days a week, so I know he will be well taken care of and monitored. The most important thing is that come night fall, we will be fast asleep with our entire family under one roof, which hasn’t happened since January, except for a brief while after his admission for meningitis. To say that it’s been a long time coming would be an understatement.

On Saturday, we were given a pass to go to the park. It definitely tired him out, but it was so nice to get out and get some fresh air. It was the first time that he has inhaled air other than from his room in over a month. For the next 3 months, we will be very isolated. Isolated is great, it means we’re together. He is not allowed to go to any busy public areas. We’ll also be avoiding the beach and water parks due to infection risks being so high for him. His immune system will not function properly for nearly one year. The construction here on the hospital grounds has kicked up a notch or two and they don’t feel that the trailer is safe for Keian to stay in due to his newly forming immune system. They have even closed the patios to the children most at risk. The hospital has found us an apartment just behind VGH that we will be staying in for the next couple of months while Keian continues that last of his journey. The last of his journey…it’s still hard to get those words out of my mouth. He was moved into room 8 for step-down, which is the very room that he spent most of his initial diagnosis. I see this as a very positive thing – he started his journey in here and he’s ending it in here. Though I will not view his journey over until we cross that 5 year remission mark, we’ve made it through the first.

He has started eating now that the mucositis has subsided. I certainly wasn’t expecting that to get as bad as it did. There were points where he wasn’t able to speak or swallow his own spit. So far, he has avoided the NG tube and that’s become his goal…to avoid it completely. The decision will be made on Tuesday, but if he continues the way he is going, I will push for them to discharge us tubeless. It can always be inserted at a later date should it be determined he’s unable to keep up adequate nutrition orally. This would also give him some control, which he doesn’t have much of through this process. So far, the only physical affects that I have noticed due to the BMT regimen is his skin. Many areas have darkened and become tough like leather, the worst being his neck. I’ve been told this is likely the radiation and with proper care should diminish over time. If you’ve seen us in the summertime, you’d know how I joke about Ryan and his sunscreen. Being a fair-skinned ginger, he burns at the first sign of the sun. Casper. Yes, that’s exactly what he looks like. Thick globs of white sunscreen drip off him like cool whip melting off a spoon. Ok, maybe not quite that bad, but he could definitely pass off as Casper’s side kick. This year, Keian will be right along with him. The radiation that Keian had puts him at a very high risk for skin cancer. That being said, it is necessary for us to seek shade whenever possible and avoid overexposure. Once we’re all moved into the apartment, we’ll be sure to take his covered wagon out of storage. We got it last summer for days that he wanted to be outdoors, but just didn’t have the energy. This year, Joren is also old enough to sit in it with him, so it’ll be nice to be able to take them on walks. This will be a good thing being in Vancouver. I told Ryan the other day that it’s kind of growing on me and he gave me the look. I agree, I’m more of a country girl myself, but when you’re here in this city and you see all that it offers, it’s hard not to love something about it. It makes me want to strive to be healthy again. Healthy. That’s a word I would love to say and actually mean it. For my whole family, that is my one true wish. To be happy and healthy.

On Tuesday, Keian goes for a Bone Marrow biopsy. This is where they will look at chimerism, which means they are looking to see if the cells are all Joren’s or a mix of both Joren and Keian. We need for them to be all Joren’s. If they are a mix of the both, they will need to try to wean off the anti-rejection drugs with the hope that Joren’s cells win the fight. That’s all that needs to be said. I’m scared as hell, more so now than ever before. I may be scared, but I’m hopeful and my positivity is heightened every day I see this little boy smiling, laughing and living his life despite everything.

Keian has proven his strength over and over and I don’t expect that to stop any time soon. Keian, you are Mommy’s miracle.

Monday, 15 April 2013

There are two ways of exerting one's strength: one is pushing down, the other is pulling up...

We are heading into Day +11 of Keian’s bone marrow transplant. Last Friday, our little Joren gave his big brother the best gift of all…the gift of life. Friday couldn’t have gone any better if I had planned every detail myself. Joren was an absolute angel. We were up and over to the hospital for 6:30. Surgery began and was complete in about 2 hours. I admit, I was extremely nervous even though we have been through surgery with Keian a couple times since his diagnosis, I’m still a little terrified every time he goes through those doors. Ryan stayed with Keian and waited up in his room. The Doctor came out from the OR and I have never been happier to hear his words. Joren did wonderfully. Not even more than a pout for the IV start. What he told me was that they were going to be happy with a cell count of 4 million cells/per kg. Not only did they get that, but they got more than double! Just over 9 million was the final count, all of which created a volume of 300 ml. Joren did so incredibly well, I couldn’t even believe it myself. By the afternoon, he was already raring to go, winning the hearts of all the nurses. This was our best case scenario – finally! Aside from having a low haemoglobin level, which will regenerate with the help of some liquid iron over the next month, he was moving around, happy, nearly pain free the same day. I’m pretty sure that he learned how to be strong from watching his big brother.

The transplant itself, when verbalized, sounds pretty straight forward. Since Joren and Keian are the same blood type, it didn’t require as much separation. Within a couple hours of Joren’s surgery, they were up in Keian’s room transplanting. It’s much like a blood transfusion, as it hangs on his IV pole. It’s not run by a pump, but rather relies on gravity to enter his blood stream. The infusion took just over 2 hours and a nurse was here the entire time to monitor any complications that might have arised. The infusion itself went extremely well, as did the proceeding days.

Heading on into day +3 is when the mucositis started to hit, and it hit hard. I read up on mucositis so many times, but honestly no amount of information I found on the internet quite prepared me for what I was seeing. It started off with a mild sore throat, and by the end of the day, his pain was at screaming level. By the next day, his lips looked like cottage cheese and by the day after that, there were open sores on the insides of his cheeks. What we weren’t actually physically seeing was the fact that throughout his body and tummy were suffering from the same issues, which explained the sudden onset of vomiting and tummy pain. They tell us that his insides would look like raw ground beef. When he vomits, he is vomiting all the mucous and stomach lining that is sloughing off. That’s what was happening everywhere. At one point, his tongue looked like thick fish batter, but was actually skin. He started on Morphine for the pain, which didn’t seem to take enough of the edge off, even though he was at the maximum dose, he was asking regularly for a bolus (a quick acting rapid infusion of morphine) on top of his continuous infusion. On day +6, we were visited by what they call the “pain doctors”, they are pretty much that. They monitor kids that aren’t getting as much relief with the regularly prescribed drugs. They told us that the next step would be to add a new drug, but unfortunately due to the fact that he has so much going through IV, there was literally no room to add it.

This meant peripheral IV. Ugh, no way! We literally said that. I know, sounds a little harsh, but this was our thinking. There has to be something else they can try before having to challenge him with an IV in his hand. Not only is he terrified of this, but we were also concerned that with non-existent counts that any extra pokes would put him at a risk, even if minimal. I really don’t blame him; they hurt like hell when your veins are deep. Unfortunately, he inherited this from me. Not one of my better things to pass down to my boy. We were right, there were actually a couple things to try. First up was to switch from Morphine to Hydromorphone – same family of drugs, just different formulation. I am so happy that we refused the ketamine through IV, as it seemed that the Hydromorph did much better. By the next morning, he was drinking water - he wasn’t able to drink, let alone swallow his own spit for the 3 days prior. It got better for about 2 days and his lips started to clear, but when he woke on day +8, the pain returned tenfold. Increasing his infusion dose and additional rapid bolus wasn’t doing much. For a couple days I was able to say that when sleeping, he was in no pain, but yesterday morning, I noticed moaning and wincing even during sleep. Another increase in his continuous drip and today is so much better. Yesterday, he was wincing for most of the day, but by late evening, he was able to sit on the edge of his bed to put together Lego with Daddy. Today, though still in pain, it is managed pain and since today is better than yesterday, I say it’s a good day!

He had an unexplained high fever for 6 days – literally unexplained. Tylenol wouldn’t touch it, so it was skyrocketing 24 hours a day. They did cultures every 2 days, CT scan, x-ray and abdominal ultrasound, all of which were clear. It’s been 2 days now with no fever, though he will remain on the antibiotics until his counts start to come in. Tomorrow is day +11 and counts are expected to come anytime between day +14 and day +30 – we hope to be sooner than later, as the mucositis will not begin to heal until it has some help from his new immune system. Throughout this whole time, he has remained stable, which from my standpoint is a success.

We celebrated his 6th birthday yesterday. It really is incredible how fast time really goes. Joren is just now started to walk and it seems like yesterday when Keian was doing the exact same thing. It wasn’t the best day for him, but we did manage to get a couple smiles when he was opening some presents. We’ll have lots to celebrate once he is finished treatment, so we’ll be planning to have a huge party, for so many reasons once that day comes. He’s ridiculously excited for that time and I don’t think he’s quite wrapped his head around the fact that we’ve said he can invite anyone he wants. This is a huge, life-changing thing going on here in this very room. Not only life-changing, but life-saving. We’ll deal with all else that arises as it comes over the years. We’ve learned to take one day at a time, heck, sometimes an hour at a time. Things change in minutes in this room. The guide lines are pretty strict when it comes to what enters this room and how it enters. Everything that enters must be wiped down with virox. Any toys that enter must be new, unopened in packaging. Any clothes that enter have to be washed under a special protocol – wash and dry in hot. Immediately place clothes into a sealed tote that has been sterilized with virox. Wipe outside with virox and place immediately into room. His bedding is changed daily, while he is in the bath. He uses special soap and cream to help with skin integrity that commonly follow with bone marrow transplant. As much as we’d love to be in here as a family, it’s hard to bring Joren in for long periods of time. Because of his love of putting things in his mouth, it’s near impossible to bring any toys in here for him, and of course with him starting to walk, the last thing that he wants is to be held in our arms. We’ve been getting help with Joren, spending a few nights away here and there and then on days that he’s “home”, Ryan and I are trading off at the trailer. Sleep is a hot commodity over here and it all seems to have gone missing.

Ryan and I remained pretty secure with the fact we thought we could manage on our own. Day 0 proved us to be wrong. Our nurse sat down with us that first day and said “you need to ask for help, or you’re not going to make it”. I kind of took what she said to heart and did one of the hardest things for me and asked for help. Some beautiful people have came to our rescue with meals, items we’ve needed and even some presents for Keian on his birthday. We’re supposed to limit our exposure, due to Keian’s fragile state and therefore even too many trips over to Safeway increase our risk of bringing something back to him. It’s not a risk we can take, so the hospital has become our home…very quickly.

Last weekend, Keian’s godmother put together a meal train for us. I can’t even describe the generosity of people, some we don’t even know. This has been a HUGE burden taken from us, as they’ve given us exactly what we need – time. There are days when there literally is hardly time to eat, let alone prepare and cook meals. There really are no words, except thank you. I can honestly say that this literally means the world to us and the appreciation can’t even be described in words.

It’s hard to believe we’ve been here for 20 days already. When I look ahead on the calendar it just seems never-ending. Days run into weeks here and half the time I don’t know whether I’m coming or going. Last night was my night to go over to the trailer and since Joren was spending the night at my Mom’s, I was able to get a little catch up on some sleep. I got over to the trailer just after 10 pm and by 10:30 I was fast asleep. I slept till close to 10 am and felt quite refreshed when I woke up. I think I had just been running on adrenaline. Tonight, I’m back at the hospital ready for a night of unexpected, but I get to be with my boy and that’s what’s most important!

I'm not able to find the amount of time needed for a more detailed blog as often as before, but I have been keeping up with Keian's facebook page - If you'd like more frequent updates throughout Keian's journey, you can join his group at - Kisses for Keian

I sit here and am reminded of a saying on one of K’s favourite shirts. “True, strong and free”. Keian is the strongest, bravest boy I will ever know and I am confident that with the power he has shown through all that has been thrown his way that he will be free. Free to be a boy. Free to live. The strength of this boy truly amazes me from day to day. The long days as the hospital are beginning to put a tole on Keian’s vibrancy. He’s lost a little bit of his sparkle, but I know it’s still there. I see a glimmer of it when he gives me a warm hug or smiles at me from across the room. Just like his Daddy, he’ll always be my shining star.

“Courage is contagious. When a brave man takes a stand, the spines of others are often stiffened”