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

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.

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.

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.

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”

31 March 2013

This is what awesome looks like...

I admit, I didn't really expect my post this weekend to be as positive as it's going to be. Keian is doing absolutely wonderful. He completed his last dose of cranial radiation on Thursday. The first time we walked into the room with him was one of the hardest things we've faced, well me anyways. To Keian, it was just like being brave for an MRI. My heart had been racing since I woke up that morning. I was able to keep things moving until they began to put him to sleep. He was laying there on a table situated just in front of a big machine that would circle around his head. When they put his mask on, I was completely taken back. It reminded me of the mask from the Halloween movies - I'm completely not joking...I swear that thing will keep me having nightmares for years. I had an overwhelming feeling - there's no turning back once this machine turns on. Of course, I know that this is Keian's only chance for a cure and given that information, there is no choice. I managed to pull myself together with the help of my littlest love and biggest love....until the big thick door closed and the green light above came on. Now, once he was wheeled out and he came back "my Keian", I breathed a sigh of relief. I really don't know why, as they have told us that any neurological side effects would not be immediate and would come on overtime. I guess my fear was that he would go in and come out someone different, someone I didn’t know. I can't describe the feeling truthfully. The rest of that morning he was incredible - full of energy and umpf...yes, that's a good word. He's always so full of umpf!!! By early afternoon, he started to complain of a head ache and began to get grouchy. Within an hour, he was vomiting and his faced was flushed. He had plans of where he wanted to go that afternoon, as it was the last day before admission. Those plans definitely weren't happening. He slept for a solid 3 hours and looked so worn down and sick while he slept. But, after a short 5 minute wake up, he was bursting through the trailer door to go outside with me.

The next morning I was concerned the same thing may happen after his 2nd dose, only worse. I spoke with his radiation oncologist and she explained that about 20% of kids have brain swelling after the first dose and that would be the cause of the symptoms K had. Day 2 went off even better than the first. When he walked in, the radiologists had decorated his mask with batman symbols on either side - he thought that was beyond cool. He also wanted to try without going to sleep, as he says he doesn't like the "wobbly medicine". Well, once again my boy floored us all! Stayed completely still during the whole procedure. I love how he asks; "How proud are you that I did it without going to sleep?". On his final day, the radiologist that will be doing his TBI next week brought us into the treatment room and asked K how he felt about trying the TBI without sedation. I wasn't really surprised when he said yes! They were beyond impressed - so were we!

We went early on Tuesday for radiation, followed by a trip to IHOP for breakfast – something that Keian has been asking to do for a long time. I was so happy to hear that, as his appetite had remained exactly how they wanted this last month. He's gained just the right amount of chub, so that he enters transplant as healthy as possible. I can't believe that my nearly 6 year old boy weighs in at 34.8 kg (kg is something I have really had to get use to, as I am so use to pounds – they also take temperature in Celsius vs. Fahrenheit, which definitely takes time to learn).

He also made a special request to me. He asked if I could crochet him a blanket. I can't believe all these years and I've never made him one. Well, this is a perfect opportunity! We took a trip out to Michaels and bought all the colours of the rainbow...literally. He wants a striped rainbow blanket! Don't ask me how he knows the little song that helps him to remember the order of the colours, but none the less, we got them all! On our way back to the hospital, K made reference to The Green Lantern and then Ryan started talking to him about how there were different coloured lanterns, as well. This then got me thinking about the meanings behind the colours of the rainbow. After reading up on it, it made me want to make the blanket for him even more.

Our admission day also brought on an unexpected occurrence - rather than being admitted in the early afternoon, they allowed us to go out for the evening and return at 8 pm to the ward he would be assigned to. We knew whatever we did with his last few hours before being in the hospital for months had to be fun! We took him to the Easter train and egg hunt at Stanley Park and to English Bay. I can't get over how much he loves the outdoors. If he could live outside, I think he would. Tarzan may just have a new side kick!

This week has been mostly uneventful - which is a great thing. He started his high dose of cyclophosphamide on Wednesday afternoon and his etoposide yesterday. He hasn't felt nauseated even once - they've been staying on top of it with 3 different anti-nausea medications, so it hasn't really had a chance to come to fruition. Aside from feeling tired in the afternoons, his little battered body still continues the fight.

Tonight, they had an Easter dinner for the families upstairs in the 3B playroom. We were lucky enough to be escorted up to get our dinner – when you are receiving chemo, you are normally not allowed to leave the ward, at least not unless attended by a nurse. It was so yummy and so nice to actually have a nice dinner that we didn’t spend hours trying to cook. Thank you to all the wonderful people that spent countless hours putting this on for the families that have to remain in hospital on a special day! Speaking of which, I saw a sign up on the ward saying that the 2B kitchen, which is where all the facilities for preparing meals are, will be renovated between April 5 and April 13. On one hand, this is a great thing as the kitchen badly needs updating, but it comes at a time where we would have needed it the most.

We’re sitting at day -5 today, which means there is only 4 days before we are transferred upstairs to get ready for transplant. I’ve met a few people that have been in transplant, but they have received their own cells, which is what they call an auto transplant (this type is not done with blood cancers). Keian will be an allo transplant, which means that they will be donated from another person. I’ve been trying to ask around to find someone that has gone through something similar to what we will be facing, but so far, I’ve had no luck. I’m trying to go into this with all the information I can absorb, but am also allowing the wiggle room for expectations to be exceeded or not entirely met. We live in the moment and we remain strong for the times when he needs us and when we need each other.

“Courage is like love; it must have hope for nourishment”

25 March 2013

Promise

It's been a week tomorrow since Keian has been out of the hospital. Whether it was a day or a year, it's never enough time. But honestly, we cherished every minute of every hour.

We're going to be tested many times over the next few months and I think we've grown so much as a family this last year, that we'll be able to rise to challenges that may be thrown our way. This has not been easy and I don't see the path to an easier road in front of us for quite a while. As devastating as it is to see him go through this, he is the one that is suffering, all while remaining stronger than I could ever dream.

His attitude this week towards all that's coming up has been incredible. It's as if it's no big deal. He knows that he will not be able to have a birthday party, he knows that he'll be stuck in the hospital for months and that for much of that he will remain confined to a bed, sick and weak, but yet he doesn't complain. He rarely complains. Don't get me wrong, he has his moments where he complains about us, but considering we have all spent literally 24 hours a day together for the last 8 months, we've done pretty well. I'm so very proud of that. So proud of my family.

Tomorrow Keian begins day 1 of his cranial radiation. It is a very important day. Not only is it one of the most stressful that we have faced in a while, but it marks the beginning of the remaining treatment prior to his transplant and hopefully, in time, a permanent cure.

Today, we got some pictures taken of the boys. In a few short days, they will have a bond that will never be broken. It was important to make sure he had something that he would be able to look at and remind him of how much it means to be a big brother and how much Joren is really doing for him. If it wasn't for Joren, Keian wouldn't have the best possible chance at a cure. I think the thought of this has actually strengthened the bond I have had with Joren. He loves and admires his brother so much - the significance of being a true brother.

That being said, I am utterly terrified. Aside from Keian's diagnosis in July, I have never been so scared in my entire life, honestly. Tonight, every time I look at him, I can't help but wonder if he will ever be the same Keian I'm looking at. No one ever knows, but I think it's the unknown that makes it worse. On the other hand, if I knew exactly what was going to happen, I don't know if I could even make it from day to day. I know that this treatment is what he needs, but I can't help but have the feeling that tomorrow is it - there is no turning back. It's like taking that initial step off the cliff. We just have to hang on tight and be ready to land with both feet.

In the meantime, I truly do need help to keep myself afloat. How I need to ask for that help I don't know, especially because I don't even know what to ask for. It's so hard when people say; "I'm here if you need me", because even though I need it, I don't know where to start. Sometimes I feel like that same lost, broken woman months ago that didn't know which way was up or down. I do know that I am stronger than I could have ever conceived - Keian taught me that. He's taught us all.

I promise to face tomorrow with confidence, with strength and most of all, hope. I promise to tell you I love you, as many times as humanly possible. I promise to hold your hand when you're scared and hold you close when you need stability. I promise to be the Mommy that you need and I promise to always take care of you. I can't promise that I can take this all away from you, but I can promise that I will not stop fighting.

"I love you for always"

20 March 2013

Keian's journey continues...

Keian was discharged yesterday afternoon and I can't begin to explain how nice it was for us to finally have everyone under one roof sleeping. To top it off, last night we were able to hear the pelting rain on the roof of the trailer - one of the things I absolutely love! The morning came and what other to do than to have a family cuddle in bed and that is exactly what we did!

This week, we are going to focus on fun and getting out in the fresh air, as we all know that will be a while. Tonight, as I type, we are over at my Dad's having a home cooked Turkey dinner - Keian's request, since it's one of his favourites. Then, this weekend, we're over at my Mom's for an early Easter dinner, as K will be in the hospital during Easter. Not to worry, I have assured him that the easter bunny will find him no matter where he is, just like Santa. He joked about how he thought maybe he would hide some eggs in the hats they put in the toilet?!

On Tuesday, he begins his cranial radiation - I'm beyond scared for this, but I'm feeling very confident he will handle all of it just like he's handled everything else thus far. He is one determined kid and he is determined to get out there and live like a completely healthy, normal 5 year old. Speaking of 5 years old, he won't be 5 for much longer. Unfortunately, since his bone marrow transplant will be infused on April 5th, he will be behind the glass on his birthday. I have told him that we will have a huge party after he's finished all his treatment to celebrate his life in every way possible<3 But, on April 14th, when my little love reaches 6 years old I will thank the lucky stars that he is our little boy.

Right now, he is feeling amazing - full of exuberant energy, love and vitality...the best I've ever seen him. He makes us smile every second of every day, whether it be with his beautiful smile or his silly smirks.

I have created a Facebook group to mark the beginning the next phase of his journey. Since this will be a fight for his life, we may not always have enough time to make as many detailed blog posts as I usually have. We will use the Facebook group to make short, daily updates and continue with the blog for weekly/bi-weekly details throughout the remainder of his treatment. Keian can also receive messages of encouragement or just a quick hello - I will be sure to read every single post that comes in for him.

If you would like to request to join this group, you can follow the link below:

https://www.facebook.com/#!/groups/106827016159117/

13 March 2013

Keian puts the "rad" in radiate...

We have another 'tentative' plan for Keian's transplant. I say tentative a little loosely, as we've been known to discover recently, be prepared for anything. We will remain in the hospital until next Tuesday, which is the day that he will be finished his 14 days of antibiotics for meningitis. We'll then be 'free' for nearly a week. Again, I use the word free very lightly, as due to his counts, we'll be limited to where we can go. That is definitely one thing that we've discovered can be worked around. Movies during weekday matinees, Toys R Us in the mornings, small grocery stores and of course our perma-getaway home...the trailer! I'm actually super happy with it - close to the hospital, comfortable bed and enough space for our necessities. Though showers aren't an option considering the small tank size, it's just a hop, skip and a jump over to the oncology ward parent showers. I may still feel and look like a hospital mom, but at least I smell good!

They will begin with his cranial radiation on March 26 and it will continue for 3 consecutive days. He will be admitted on March 27, after his 2nd treatment of cranial radiation and will begin his transplant countdown and chemotherapy. His transplant day, the day he physically receives Joren's cells, will be considered day 0. The 10 days preceding will be negative days, so his first day in hospital will be day -10, and then each day proceeding the transplant will be +. The following week, he will begin total body radiation, which will for the same 3 days, though he will go for 2 seperate treatments during the day.

They have warned us that Keian will definitely develop nausea and vomiting through the treatment - to be honest, he's been quite lucky with those side effects. Of course, he has definitely had his horrible days, he hasn't had a consistent time where this has been that much of a problem. This is the time where we expect the worst, hope for the best! He's been doing absolutely amazing these past couple of days with his nutrition intake. For a while there during this admission, it was touch and go, so I was kind of unsure of what might happen - perhaps they'd insert the NG tube again.

He will be at increased risk of bleeding internally and will have severe reduction in white and red blood cell- we've been told to expect Keian may need up to 2-3 transfusions per day for the weeks following. Of course all of these are the immediate side effects - we've been given a break down of what to expect in the days, weeks, months and years following, but since all children are different and don't live by textbook creations (we all know Keian has broken the mould many times during his treatment), we really won't know anything until we see it day to day.

Our Oncologist came to see us this morning to discuss the plan of maintenance of Keian's remission during these 2 weeks of delayed treatment. Their overall goal was to have Keian with a negative MRD (minimal residual disease), which looks at the minute levels of cellular formation. After his original remission back in August, he ended with a positive MRD of .26, with his 2nd remmision back in December, he ended with a positive MRD of .12 and with his recent test last week, it was discovered that he is finally in a negative MRD, which means that he has less than .1% leukemia cells (Less than 5% is considered in remmision - keeping in mind that remmision does not mean CURED). They are pulling from all they have to offer in order to give Keian the best chance of a cure. So, this is a GOOD thing! The trick is to keep him there, which could pose to be a little tricky in itself, as his leukemia has proven to be very aggressive. He'll be getting an extra IV dose of vincristine, which is the drug that caused K's drop foot and muscle wasting - though this will be a singular dose, it will be unlikely to cause any additional damage. He will also begin a 5 day dose of prednisone. Oh, prednisone, we have a love/hate relationship. I will get a little chunky monkey for a short while with an appetite like 2 grown men, but I will also have the horrible attitude that comes with it. Again, this is a short lived dose, so it's unlikely to cause any additional side effects. Another they will add in is mercaptupurine, otherwise known as 6 mp. He had that during his original treatment plan, but it is an effective anti-cancer drug. Which reminds me, something I have never asked if if they will keep Keian on some sort of anti-cancer drug long term after this treatment is over...food for thought, that's for sure.

For now, we wait. We're on day passes throughout these last days of admission, so it's almost as if we visit for a short hotel stay overnight.

"The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than suffering."

11 March 2013

Sunny days, chasin' the clouds away...

Today is Sunday and though Keian was very sick for the first 2 days after admission, he's had a great couple of days to follow!

He is currently on 2 antibiotics - originally this was 4, but due to some cultures returned as a negative for a particular bacteria and virus, they were able to remove this from his line. He is still without his NG tube, but his appetite is hit or miss right now - he's down .7 kg since Thursday. He also had an MRI on Friday, as they wanted to be sure that his meningitis hadn't pooled any pockets of infection in his brain and spine. He's always so proud of himself after MRI's, as he should be! He requires no sedation, nor does he use the headphones to block out the sound - all this considering they are upwards of 45 minutes and he is lying straight as a board, he doesn't move an inch!

Since bacterial meningitis is contagious, Joren wasn't able to come near us or the hospital for the first 48 hours, but once infectious disease cleared K as being infectious, he was taken off isolation and the brother's were reunited! They sure do love each other and since there is no NG tube for Joren to get his hands on, they were able to get in lots of cuddles.

For the last 3 days, they have given K a 2 hour pass to leave the hospital. Though he is not allowed far, it has been wonderful to get him out, especially when there was 2 gorgeous days. A couple quick trips to the trailer, out on the patio to play soccer, to the playroom and his favourite...the Lego store over at Oakridge!

Overall, he's doing extremely well - extremely well does not come without incident though...his cultures from his cloudy LP and blood have not grown anything. The problem with this being unknown, is that they go into transplant unknown. His symptoms have subsided, but they will keep him on antibiotics for the full 14 days to try to alleviate any chance that this bacteria will remain.

I've been noticing his eyes a lot more this last couple days. I even mentioned to Ryan today that it appears he is showing off perma eyeliner - until I looked closer tonight. His eye lashes are growing back!!! This will be short-lived, as once he begins transplant conditioning, it will all fall out again. Just the thought of his beautiful thick, long eye lashes flickering around make me smile - all of Keian's friends and family will remember those amazing lashes! He looks so healthy right now - wonderful colour in his cheeks, a little pudge here and there and a smile that doesn't end! It's a wonderful sight to see<3

We've been having some problems getting Keian to eat fruit and tonight as I was racking my brain, I remembered a place that did edible fruit arrangements and thought perhaps that would do the trick. It definitely wouldn't hurt to try, especially since these weeks prior to transplant give us the best chance, nutrition wise, to get him ready.

Just as we were getting ready for bed tonight, our nurse told us that we would have to move. There was a patient that came into ER that was very sick and therefore was very important for them to be up on K's floor. He's been on 3B since Wednesday - 3B is where the sickest kids are and where K will be during transplant. So, after 9 pm, we were packing up our room to come down to 2B.

Today, Ryan and I celebrated our anniversary - spent with our boys, we wouldn't have it any other way! We've grown even closer this last year and we know we can count on each other always. I love him more than he can even imagine - he's been such a huge support for me throughout Keian's journey and during our happy days, he's been my best friend and giggle partner. There's been days that I just couldn't hold things together and there he was following right behind me picking up the pieces. I am a very lucky woman to have such incredible men that I can call my own. Throughout this next year, I am confident that there will be a lot more celebrations to join in our days. Until we wait for the next one, we keep smiling and surround ourselves with hope and strength. We will allow the bad days and tears to seep in, but will follow those days with courage and love!

To those wishing to send Keian mail, you can send it to:

BC Children's Hospital Oncology 2B - Keian Blundell 4480 Oak Street Vancouver, BC V6H 3V4

6 March 2013

Heavy hearts...

Keian was discharged last Monday - his counts were so great and we were all beyond happy that we had a lot more time than anticipated prior to transplant to brighten Keian's days. He also had some wonderful surprises that arrived by mail from some special people in our lives, as well as some very special girls that have never met Keian and sent him some paintings! He loves all his mail and they are all with us in the trailer. Much of last week was filled with days of organizing the trailer and finishing up last minute things at the house, as well as numerous appointments to get him ready for transplant. On Wednesday, Joren was assessed in clinic and we were informed that he would not be able to bank his own blood in order to treat his anemia once he donates his stem cells to Keian, as the needles used for collection were too large. Instead, they opted to begin a regime of iron so that he will have an extra boost. We hope to avoid a transfusion, but there would be no other options if it were necessary.

Thursday was an extremely emotional day - honestly, most days around here are. We had our family meeting - present was Keian's Oncologist, his Radiation Oncologist, our Psychiatrist and the Transplant Nurse Coordinator. We went over much of the information that we knew, but there were some new things held amongst. Keian has had prior white matter changes, 2 in fact. They have compared the prior MRI to the one that was repeated during his recent hospitalization and there has been a new change - likely additional methotrexate toxicity. This complicates things, as the Radiation Oncologist feels that due to this, Keian is at an increased risk for neurological deficits...only time will tell. Monday was a dreaded trip to the cancer agency for his radiation planning, measurements, CT and protective mask forms. We stood there helpless as our little boy was put to sleep. We stood watching, as he had bright red beams running across his body in order to create marks for his radiation. After this draining day was over, I had a wave that hit me and I couldn't stay afloat. The negativity just overwhelmed every single feeling I had inside me. I should be thinking about how my little boy will beat this and be soon running on his feet teaching his brother how to play baseball - this has been extremely hard to imagine lately. The list of "possible" side effects, "likely" side effects and "almost definite" side effects is completely overwhelming. The emotions that run through is literally like I'm being burned alive. Really, I would rather that be the case than what we are truly facing. Keian will almost definitely never be able to father a child, he will almost definitely have numerous organ deficiencies over the long term, he will almost definitely have a learning disability (how minor or severe will be determined as time goes on, as it can take a year or more to show these changes), he will likely develop thyroid cancer and meningiomas (a thickening around the brain) that will have to be surgically removed later in life. These are yet a mere few in comparison to the possibilities that have been laid out.

Keian's favourite restaurant is East Side Mario's, and since the location in Langley closed it's doors, he's been worried he would never go again. Since he was feeling so good and we felt we needed a cheer up day, we took him to Lonsdale Quay to look around and go to what else other than his favourite restaurant! Since they opted to keep his NG tube out until next week, he was so happy to be able to eat on his own. And eat he has done. This last week, he's put on close to 1.5 kg!

Yesterday was our scheduled clinic visit so that Keian could undergo a bone marrow biopsy, lumbar puncture and intrathecal chemo. The good news is that Keian is still in remission!

It is with an extremely heavy heart that I write this tonight. Keian is laying in a hospital bed beside me. At 4 am, he woke up vomiting and immediately screamed that his head hurt extremely bad. I noticed right away that he was burning up - his fever was over 39. His counts are good, so we couldn't figure out why. I called the Oncologist on call right away and took him immediately to emergency. Being in the trailer may have just saved Keian's life today. After an LP came back cloudy with a WBC count of over 2000 in his spinal fluid, he has been diagnosed with bacterial meningitis. Only an hour ago, he was shivering, curled in a ball, with a consistent severe headache, stiff neck and vomiting. Meningitis is an extremely serious life threatening condition and unfortunately my sweet little boy that I can't stop looking at is living with it this minute. He is being covered with 5 different medications, 3 of which are strong antibiotics. His headache is so bad that he requires an intermediate dose of morphine, which puts him in a pretty sedated state. His eyes are incredibly swollen, for which I assume is because of the cranial pressure from the meningitis. He is hooked up to a monitor to make sure that if he is sleeping that he is monitored for heart rate, as the nurse told me that as symptoms progress, they fall into a deep sleep and may be extremely hard to wake.

Besides the complications meningitis can bring on it's own, this will also delay his bone marrow transplant as they are unable to go ahead with it when he is this un well.

We are strong, but how much are we expected to take. This little boy is so brave, this little boy is the light of my life, this little boy is fighting so hard, this little boy loves to laugh and giggle, this little boy needs all the love his heart can hold, this little boy is mine and I will fight until he is back in my arms...healthy.

Now is the time we show everyone how even the smallest star shines brightly in darkness, my boy. You may be small, but you shine brighter than anything I have ever seen or experienced. I'm right there shining with you<3

24 February 2013

A strong end, brings a strong beginning...

It's been a busy few days for everyone. On Thursday, Keian's fever held back. They wanted to be sure to cover all the possibilities with his secondary infection, since everything was being returned negative. They took a throat swab to check for strep and we went down for a chest x-ray to rule out infection around his lungs. Yes! I said went down! It was his first time out of his room since February 5th - mind you, he needed to wear a mask, but none the less, it was a very welcomed adventure. It's pretty bad when you consider meandering down to the radiology department an adventure! Keian has grown into himself and his personality quite a bit the last couple of weeks - he was extremely chatty with the radiologist the second the door opened.

Thursday morning also brought some wonderful news - Keian's counts were coming in! Nearly 2 weeks ahead of schedule, and are still continuing to climb, bringing in a number of 6.36 for his neutrophils this morning! He was taken off the GCSF today, so his counts will drop once that happens, but he will likely still remain high enough to avoid becoming neutropenic again. And within a few days, it will begin to climb again.

What does all this mean for Keian, since he is now no longer fevering and tomorrow is the last day for his antibiotics? It means he will be discharged! Anywhere between tomorrow afternoon and Wednesday, we'll be walking out the doors as an inpatient until March 12th. We won't be far, as our 'home' is just across the parking lot!

I was home on Thursday and Friday night while I was packing - thanks to some lovely ladies, I was able to get most of it done before Saturday afternoon arrived. Saturday night, Ryan and I switched off and he went home for the night to finish last minute things.

This morning, we were beyond amazed when over a dozen men showed up to help Ryan move. Two of those men are part of an amazingly beautiful family that have been a wonderful support throughout most of our journey. The other men were firemen that took time from their day to generously help move us! Incredible...that's all I can really say!

Thank you to every single person that have helped us along the way, so far. We're strong, but we're even stronger with you! We love you all more than words can say<3

19 February 2013

You need a blue sky holiday...

Although Keian developed another fever yesterday, he seemed quite energetic and completely himself. It wasn't until I got him up to go pee in the middle of the night that things changed. His throat, which seems at it's worst when waking from a sleep, was so bad he couldn't deal with it. He sat down on the toilet and it killed me to watch as it looked like he was about to pull his skin off, as he cried and screamed in pain. Just as I rushed to push the call button for the nurse to come, he started vomiting, followed by more screaming due to the pain it was causing.

They did warn us that mucositis would be extremely painful, but I wasn't quite prepared for seeing him like this. The nurse gave him morphine, and after a light massage of his back, he fell back asleep. Of course a couple hours later, I called for the nurse again as Keian was snoring - he doesn't snore and the only time I have heard that was just prior to his diagnosis when he had a mediastinal mass obstructing his airway.

Being in the hospital can very reassuring, but it definitely doesn't take away worry. Every day that I'm not at the hospital, it's as if I panic that something will go wrong when I'm not there. Especially at times where he has fevers and infections. Heck, even when I'm right beside him I barely sleep.

When he was born, we were so incredibly happy. He was so well behaved, rarely cried and slept through the night right from day 1 - Ryan and I often reminisce about how we had to set out alarms so that we could wake him up to eat, as many times he wouldn't wake on his own. Not in a million years would I think it would turn from being blissfully happy, to checking nightly to make sure he's still breathing. I can't even describe the feeling.

He woke this morning with a completely normal temperature, and seemingly felt better, but just before lunch, he spiked to 39.4 (103) again. Cultures still haven't came back from his blood, nor from his NPW. The waiting is like walking over hot coals numerous times a day.

I'm starting to get very scared for what is coming - it's coming so close, so fast. March 12th, Keian will be readmitted (hopeful to have a week between this admission and the next, so that he can get some fresh air at least) to begin his transplant conditioning and radiation. On March 22nd, Joren will be admitted and the process will begin. He's been through so much in these past few months and I know things only get more complicated.

Tomorrow we will get the key for the trailer - I am SO incredibly thankful to have the opportunity to stay on-site, while Keian faces the hardest part of his treatment.

Throughout this admission (Since January 29), Keian's spirits have been nothing short of amazing. He's always joking with the nurses, making funny noises and giggling.

Last night, Keian said; "I hate having leukemia and being sick, it's so boring". I can't even believe that the first thing that comes to his mind about his sickness is boredom. I think I could learn a few things from my own little boy...maybe we all could. He's taught me so much already - how to be the kind of Mother he needs, he's taught me patience, he's given me strength and courage to help him to possess those very things, he's taught me what it truly means to have hope and most of all, he has shown me how easy it is to love someone whole heartedly. All this from a little 5 year old.

And just as I was about to post this, vitals were being completed and Keian has yet another fever...it just won't quit and there are still no answers as to why.

"Your illness does not define you, your strength and courage does"

18 February 2013

We must build dikes of courage to hold back the flood of fear

Yesterday I had a great birthday! It started off a little earlier than I would have liked, but the result of that was wonderful! My girlfriend took me to bead works on Granville Island and we made bracelets to support my special boys fight and the day ended just the way I loved it...my little fighter in my arms<3.

I missed Joren so much last night...we spent 3 nights together prior to yesterday and all 3 nights he ended up in my bed for cuddles. It's hard to be absent much of the time from him, especially since he's growing and changing so quickly. That should get a little better once we're out in Vancouver full time through all this. Speaking of which, our social worker just came to inform us that the trailer is finally available. It makes it a little easier for us, as we can start moving our 6 months worth of supplies in there before the end of the month.

We didn't receive the best of news this afternoon. Keian's temperature has been climbing for most of the late morning and is now currently sitting at 38.1 - his blood cultures for his bacterial infection from a few days ago, have now come up negative, but the antibiotics he is currently on are broad spectrum and do not cover all the bases. They've done another blood culture, testing for c-diff and a nasal pharageal wash. I guarantee he will not like the NPW - he is very sensitive with anything to do with his nose, especially since the NG tube has been placed. He will also require another platelet transfusion, of which will be the 8th one since admission on January 29th. They'll be starting him back on vancomycin, before they know what type of infection it is and what it is sensitive to.

The Doctor just came to examine every inch of Keian, as infections can also hide. She also mentioned it is possible that the same klebsiella pneumonae infection has returned and become resistant to the current antibiotics. Wonderful. It seems things just keep creeping in, in more ways than one. For now, he looks well, so they're testing all his bodily fluids and blood for any type of virus, bacteria or fungus.

He loves it when the teachers come to work with him - one is with him now. I know it makes him feel very good when he gets compliments and the first thing she said to him was, "I hear you're brilliant". As a Mom, admittedly it makes me very proud. He's always been a very inquisitive child and very interested in hands on learning. I'm so happy that they have teachers on site that are willing to work with him. As much as I know he loves spending time with Ryan and I, he needs time with others, so that he can have some diversity.

"The world breaks everyone, and afterward, some are strong at the broken places"

I love you more than words can say <3

A Father's love...

Each day, I’m surprised by how well Keian is tolerating treatment and everything that has been thrown his way. It appears as though we can breathe a sigh of relief when it comes to the previously mentioned klebsiella pneumonae. The culture they drew from Keian have since shown negative growth. They’ll keep him on the antibiotics for another two weeks, to ensure it stays at bay. This infection is known to hide in the nooks and crannies of the human body, much like the Leukemia he is already battling. I am beyond proud of the little boy that I love to no end.

This past week or so, we’ve celebrated a couple of days that we would normally outside of a hospital; Valentine’s day and Chantal’s Birthday. We tried to make both as special as we could, while being confined to a hospital room. We try to make each day a great day, but even more so these days with “homemade” cards and presents. For Chantal’s birthday, I helped Keian make a fantastic family picture, which was put into a decorated and hand painted picture frame of his own design. He also made an amazing birthday card all, on his own. I absolutely love to see him put so much time and care into everything he makes. To make the room more cheerful, I went to the gift shop to grab a birthday balloon and ribbons. Keian and I also decided what kind of Birthday cake we should get her. When she came into the room, she looked so happy to see Keian, myself and the “party room” we had. Keian and I sang a rousing rendition of Happy Birthday, which was apparently heard by a few rooms in the ward. Of course we wish we could have taken her to dinner or somewhere fun, but we make the best of that which is given to us. I think we do a great job of that. Not to brag, but we do have a great family that can roll with the punches, or atleast we try to.

This time on the hospital is much different that others. I understand what lies ahead for our little hero, but still. With his numbers so low, Keian is stuck in his room. No open doors, no playroom on 3B, no trip to the cafeteria. His world is his room. It’s hard to see him get frustrated with boredom sometimes. We try our best to keep him busy. Each morning I wake up with him is a beautiful day. He is so sweet, most definitely a morning person. Just hearing him say good morning is better than anything. When one of his doctors came by a few days ago with x-rays, his eyes lit up. He was so attentive and inquisitive. Both her and I were amazed with the questions he asked and the fine details that caught his eye. He’s definitely wise beyond his years and shows a maturity that even some grown men fail to possess. The doctor emailed us a sample of the images, including one that showed gas pockets in his torso; yes we saw his farts and burps...he loved it, but what boy wouldn't.

It’s really hard to believe that in 10 days, we will be out of our place in Langley and living full time in Vancouver. This couch that I’m sitting on right now will be in storage. It’s challenging to move this way. To be honest, Chantal is an expert on packing, while I’m the master of grunt work. To do so without the other there is difficult and discouraging - this whole situation is beyond difficult to endure, especially when our world now revolves around trade off's. Sometimes, I wish we could stay. The landlords have been so accommodating and concerned with our well being. Chantal was right when she said to me though, this place will bring memories of when Keian was sick. I agree with her, though it did feel like a home. The next place we find, we will not compromise. We will not settle. We will find our children the home that they deserve. Until then our home is BC Children’s Hospital, our extended family will be the Doctors, nurses and others who help us during Keian’s Journey. We have a roof over our heads, clothes on our backs and food on our plates. Yes, sometimes it’s hospital food, but that’s besides the point. If Keian can fight this hard, then we can fight to make wherever we are home.

Ryan - Daddy to the best little boys ever.

13 February 2013

Twinkle, Twinkle little star...

Today has been eventful to say the least. Keian woke up at 1 am shivering, but wasn't showing evidence of fever at that time. Our day nurse came to check on Keian at 8 am, while he was still sleeping and noticed he was breathing fast. After taking his temperature, it read at 39 again.

We also got the results back from his cultures yesterday and he tested positive for a bacterial infection - klebsiella pneumonae, which is a serious infection of the blood. Unfortunately, this was the exact strain we were worried about. The positive thing is that they caught it early - they told us that had we not been in hospital, things would be much more serious at the moment.

Nurses and Doctors have been shuffling through here all day wearing yellow gowns, gloves and masks. I am certainly not complaining...I couldn't ask for better care. I know the Doctors are working hard to help Keian with this fight. They tell us it's very unlikely Keian will turn to septic shock, as they got the antibiotics into his blood stream quickly, but the next 3 days are the most critical. He's been without fever for the day, but spiked again at 8 pm. The plan is to take cultures everyday over the next 3 days in the hopes that they will not grow.

His counts still haven't recovered and he required the additional platelet transfusion today as they didn't feel he was stable enough to wait until tomorrow. Lucky number 16 transfusion?

Tomorrow is Valentine's Day and although Keian will not be able to join in the parties that are happening upstairs, I know he'll have a good day! We'll make sure of that! He's requesting a turkey dinner tomorrow...a turkey in a little kitchen in an Oncology ward? Ha. I'll opt for a whole chicken, mashed potatoes and veggies...I don't think he'll realize it's a chicken, it's just a baby turkey, right?

He was asking for a snack before bed, but was having pain when swallowing the food. We've been told this is mucositis, which can get incredibly painful.

My little love he is. He asked me to rub his back tonight, so I sat on the edge of his bed while he talked to me about how much he loved it when I did that because my hands were so warm. It's something I've done since he was a little baby and it warms my heart just as much now, as the first time I held him in my arms. You'll always be my little sweetheart<3

"Never lose hope - when the sun goes down, the stars come out"

12 February 2013

Cancer sucks

This morning, Keian woke up with a fever of 39. When I talked to Ryan, Keian was curled up in a ball shivering - worst feeling ever when I couldn't be there at that moment with him. With his blood counts as low as they are, he is unable to fight off infections. They drew blood and sent it to the lab, but we will need to wait 2 days before we find out the type of infection it is - in the meantime, he has been started on 2 strong IV antibiotics to do the fighting for him. He was complaining of a slight sore throat this morning, so we're hopeful that it is just a touch of a viral infection...the lesser of the evils.

He was much better by the time I got to the hospital - he requested I bring stuff to make tacos for dinner. I was quite impressed he was interested in food, as he is on full NG feeds. About 2 tbsp of ground beef and cheese and he was full.

He also required another platelet transfusion - they aren't lasting for more than a day. The port site for his GCSF was also looking a little red and inflamed tonight, so the nurse removed it and they will place another tomorrow night before his shot needs to be given - definitely an awkward position, as he cries nearly every time now. When he had the GCSF last month, all we needed to do was tap on the skin above and he was golden.

I follow an amazing cake decorator on facebook by the name of The Sweet Flour - she had a post for someone to win a free giant valentines day cupcake and I was chosen! I'm so excited to give it to my boy on Thursday, I just know he's going to love it!

He's quite flushed, but yet his fever is down to 37.3, thanks to tylenol.

I look like something I call "Hospital Mom"...not all of us take on this wonderful hue, but I'm one of the lucky ones. My skin is horrible, my hair is littered with grey and I need a cut - oh what I wouldn't give to be getting my hair and makeup done right now!

"You never know how strong you are until you have to be"

10 February 2013

he·ro/ˈhi(ə)rō/ Noun: A person, typically a man, who is admired for courage or noble qualities

We didn't get the best sleep last night. At 3 am, the nurse came to do K's bloodwork, after which he told me he had to throw up. It's always hard to settle after that, especially because his NG tube always needs to be tested after vomiting to make sure it hasn't moved into the lungs from the stomach. It appears as though tonight may be taking on the same fate - he sat up in bed and barely made it in the bathroom before I flew to the door with a bowl. Ondansetron, teeth brushed, water and then back to bed. He's been doing so much better with the sickness than I expected during this phase. So far this week, only a handful of times.

He wasn't in the best of moods today. Everything seemed to bother him - he was grouchy and out of sorts. He very well may have not been feeling well and that was the way he portrayed it instead of verbalizing it.

His platelets are plumetting nearly daily and today he required another transfusion, just as he did on Thursday. Before being thrust into the world of cancer, I was oblivious to exactly what goes on within the walls. Keian has required numerous transfusions since he was diagnosed only 7 months ago - it is one of the very things supporting his body to make it through the side effects of this chemo, it really makes you realize how important it is to give.

Daddy and Joren came for a visit today - tonight will be my last sleepover before Ryan stays tomorrow. Joren is starting to get more and more out of sorts when at the hospital. He loves seeing his big brother, but it's becoming increasingly difficult to entertain an 8 month old wanting to learn and grow in a small hospital room. We've decided it would be best to keep him home most of the day and then when Ryan and I switch off daily, we will stay together as a family for a short time and then head back home so that Joren can explore.

It's hard being at home alone. Knowing that it will be months before I can even sleep beside Ryan honestly makes me sad. He's always been such a huge comfort for me and he has brought out the best of my strength - it's difficult being away from that.

My hero does not don a cape. My hero cannot fly, nor can he stop a speeding bus with his bare hands. My hero withstands the bad days, but smiles like they're good. My hero laughs through the pain and he rarely complains. My hero gets poked, prodded and pumped with poison. My hero fights the villain until breathless and then goes back for more. My hero is not a man, but a little boy that has more strength and determination than anyone I will ever know. My hero is my boy. My hero, my Keian<3

9 February 2013

Off to a strong start...

We were able to spend 5 days at home, as we were given a multiple day pass - those days went way too quickly. Tuesday snuck right up and we were packing for a much longer stay than we've been accustomed to. Our truck was literally packed to the top with those 'necessities' - ok, maybe not what some would consider necessities, but things that are definitely essential for Keian! Posters of superheroes, his Team Keian Kaptain Lasers T-Shirt to hang over his bed, some familiar blankets and stuffies, a ton of craft stuff to keep him busy on these long days and the Wii u. Oh, and I even get to stare at an angry red Ninjago alarm clock:).

Tuesday started the first of the 4 High Dose ARaC chemo administered over 2 days (just like last week). The difference compared to last week is that his counts have now crashed - in fact, the lowest yet. This is defininitely what they knew would happen, so now it's a waiting game and we hope that his body spares him of infection. We need A LOT of thoughts and prayers for this, as with no WBC's, his body cannot fight. He was placed in protective isolation on Wednesday and will remain like that until his counts rise, which will be atleast 3 weeks.

We are so thankful that we got an average sized room - the problem with hoping for a large on is that when they are busy, they have no choice but to double up. I don't know how another family could deal with my 3 boys' craziness...ok, maybe I'm a tiny bit crazy myself. He's so used to being confined to his room, that when the nurse called him across the hall to take his weight, he came to the door and peeked out like he was looking at surroundings that made him uneasy. The Doctors are quite surprised at his energy levels - usually when receiving this chemo and counts being as low as they are with Keian, kids are lethargic and tired. Not Keian, atleast not yet anyways. He's bouncing around and off the walls! Ryan had to stay 2 nights in a row this week, as I felt sick and had to stay away, but the first night I did stay, the Nurse told me how nice it was to hear laughter coming from our room.

We have been getting worried about how Keian has been when we're in clinic or admitted. He has been very withdrawn and phasing out his care givers when they are trying to communicate. I think he's so busy being the brave boy that we've seen him be, that he sometimes forgets that it's ok to be scared - we'll always be there for when he's scared, uncertain, sad or happy...might cover it all better to just say we will ALWAYS be here for him no matter what!ut. This week though, I am extremely happy to say he has done a complete turn around - that's not to say there won't be anymore of those days ahead, but it means that all of his care givers can finally see the goofy, fun-loving, loud and proud boy that we see almost everyday! He is now on full feeds with the NG tube - he's trying, but he hasn't been able to eat even just one bite of anything over the last 3-4 days. We get him things he asks for, but when it gets placed in front of him, he gags or says he just can't eat it. His taste has changed so much from the chemo - even drinking chocolate milk, he says is too 'sour' tasting. All these foods that he once loved, taste horrible for him. Despite the fact that he is on full feeds, he is feeling great! He has been sick only one morning a handful of times and he is now completely off the ondans for his nausea. They reinserted the port for his GCSF again to stimulate his cells to regenerate...day 2 and about 20 more to go! So really, aside from the usual stress of being a 'cancer family' and everything that comes along with it, the last couple days have been pretty low key at the hospital and low key is exactly what we want it to remain.

Keian loves playing mailman - he wants to take the key and pick up the mail everytime we mention it. He also LOVES receiving mail of his own. While he is set up in the hotel of health (sounds much better than hospital in my mind), he is able to receive mail! Cards or notes of encouragement or even just a little hi or a picture would we wonderful! I'd love to create a wall of hope.

If you'd like to send something to him, you can send to:

BC Children's Hospital Oncology 2B - Keian Blundell 4480 Oak Street Vancouver BC V6H 3N1

"When life gives you 100 reasons to cry, show life that you have 1000 reasons to smile"