Sunday, 11 August 2013

Celebration, Devastation and Determination...

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

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

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

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

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

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

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

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

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

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

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

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

You can join in his fight by following us on Twitter

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

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

Monday, 1 July 2013

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

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

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

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

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

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

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

Thursday, 30 May 2013

Never give in, never give up...

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

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

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

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

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

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

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

Monday, 6 May 2013

Mommy's miracle...

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

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

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

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

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

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

Monday, 15 April 2013

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, 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”

Monday, 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"