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”

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"

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/

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."

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

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