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

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

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"

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.