Gift of a lifetime...

We arrived home from our stay in the hospital on Monday evening. Keian was so incredibly depressed being in the hospital - we could barely manage to get a smile out of him. The child life department caught us just as we were walking out the door to tell us that the Canuck's were coming to visit the kids and that if we wanted to wait, Keian would have that opportunity. He wanted to go home so much, that he opted to leave then and there. He kept repeating how excited he was to come home, but his mood didn't change all that much. He's back on some steroids, all be it different ones than before - they can cause alot of mood changes. He was very happy to walk in the door and be reminded of how Christmas was coming upon us - he walked over to the tree and said "I love our tree that we decorated and I'm so excited for Christmas"

Yesterday morning when Keian woke up, you could definately tell that he wasn't feeling well. Given the option to go out somewhere, he would say "maybe later" and then ask if we could cuddle. "I love cuddling with you, it's like a nice warm hug!" I had planned on taking him to the grocery store to have him help to pick some food that he might like, as we're trying to help him gained back some weight that he's lost - he's lost 15% of his body weight since diagnosis in July. We chose Walmart, but I could see he wasn't feeling up to walking, so I took a blanket and lined the buggy for him to sit on. It broke my heart - the entire time, he had his head down. After a good night of cuddling, he woke up this morning feeling a bit better. He asked me again what it meant to have a bone marrow transplant and just as I told him before, I explained that his sick blood was in his bone marrow and that Joren loved him so much, that he was going to give him something that he has in his body that will help to fight the sick blood. A couple of months ago, we all got our bone marrow tested to find out if we were a match, as a just incase. This is no longer a "just incase", as Keian will definately require the transplant. There was a 1 in 4 chance that a sibling would be a match for Keian. Joren is our angel - he was a perfect match for his big brother. Joren will not be under any risk in donating to Keian - he will undergo general anaesthetic and get bone marrow extracted - he will be a little sore in his hips for a couple days. There is a 1 in 20,000 chance for there to be a match with an unrelated donor.

For Keian, this will be the be extremely hard on his body with everything that he is required to undergo prior to, during and after this transplant. Joren is Keian's best chance, as having a matched sibling raises his percentage of outcome.

Until this Friday when Keian goes back to receive his triple intrathecal chemo, this is all the information that we have been told.

Last night, Keian wanted to decorate our gingerbread house and today, has already asked if he can start eating it.

Through all our struggle, our family has pulled together and we are stronger than ever - standing hand in hand, refusing to allow cancer to break our hold.

<

Blind-sided...

I don't quite know how to even write this, since I haven't quite accepted what this weekend has brought upon us. We came into the cancer clinic Thursday for Keian's regular treatment and lumbar puncture. Since his counts were expected to go down over the weekend, we wanted to make sure we took advantage of the couple days we had left and took him to Bright Nights in Stanley Park. When we got home, there was a message from Keian's Oncologist saying it was urgent she speak with us. My heart sank.

Keian has relapsed - his Leukemia is no longer in remission. It has returned in his CNS. We are still waiting on the results to see if it has also relapsed in his marrow, but won't see those for another couple days. What does this mean for Keian - This time, it's different, and brings on heaps of possible complications. He will get triple intrathecal chemo and much more intensive IV and oral chemo than he originally received. After 3-4 months of this chemo (in addition to brain radiation at a higher dose than his original protocol) and reaching remission, Keian will need a bone marrow transplant. I can't quite put into words what I'm feeling right now. The Doctor tells us that if it has relapsed in his CNS only, that there is a 45-50% chance he will reach remission and stay there. If it has relapsed into his bone marrow, there is a 15-20% chance he will reach remission and stay there. He will be receiving a larger dose of brain radiation than originally anticipated, which will bring on it's own set of challenges. He will also have his entire body radiated and completely stripped of his immune system to get him ready for transplant, at which point he will be admitted into strict isolation for 2 months.

We've been in hospital since Friday morning, but hope to be going home tomorrow at some point, as it appears his kidneys are handling this dose of chemo without many problems. It's so hard being positive all the time when you're constantly being thrown to the ground, but I will get up and I will be the firm ground that Keian needs for this fight. Admittedly, I am a complete mess when I'm alone, but when I'm with my boy, I am what he needs. I always will be. I will hold his hand. I will hold him when he's sick and rub his back when he's sore. I will carry him to bed and sleep next to him when he wants me to. I will do what I need to be the Mother that he deserves and I will fight my ass off to get him through this. I think it goes without saying that I would take his place in a heart beat. He is and will always be the my very best and bravest hero. I love you forever and always, my special boy.

"Storms of life are strong enough, without cancer stepping in Came creeping through the back door, just counting on a win. Engaging you in battle, we firmly stand our ground Armed with courage, faith and hope, our child's life we surround. This fight rages day and night The will to survive is strong We will never surrender In our lives you don't belong. Prepare yourself to lose this time Our child's life you will not take"

Keep repeating - "Positivity shall prevail"

So, most of the results of what we've been waiting for have came back. When Keian got his chemo on Monday, they took a nasal swab to see what type of germs were harbouring. Blood cultures for bacteria came back negative, which means there is no internal infection! He has a bad cold, which explains the fever - he didn't have the "typical" cold symptoms, so that's why they were initially concerned. We're still waiting on the results for the blood tests done to determine the cause for the grey matter changes, but we received a call today from Keian's Neurologist to tell us that they received funding for a special genetic test that would be able to determine if Keian has a pre-disposed sensitivity to methotrexate, which is amazing!

On Saturday, prior to the whole fever happening, we went to take the boys to visit Santa - one of Keian's favourite things, though really, anything Christmas will have the word favourite in it for him! Of course, as we're always concerned about germs (Purell is our best friend and we are likely their best customer), we got up extra early, so that we could be first in line - success. This isn't the best picture quality, as I took a quick shot with by phone after picking the pictures up from Potters today.

Tomorrow, we will be starting the whole decorating process - I think we're all excited to make it truly feel like Christmas. We're already trying to compile a list of where we can go for our christmas light display drive around. Yet again something Keian just LOVES!

Touch more good news is that Keian is starting to feel a little better, but unfortunately his little brother is now suffering the brunt of it. While Daddy took Keian to his chemo yesterday, I had to stay home, which was good and bad. This was the first time ever that I have missed one of Keian's treatments, which killed me that I couldn't. Joren spent the day in my arms sleeping - trip to the Doctor for him once the boys came back from BCCH came back as a positive for the stomach flu. I think it'll be a short one for him though, as he's already starting to turn around to the happy little guy we know and love.

We were sent VIP tickets to see the Santa Claus parade downtown this Sunday, which was so amazing! We will have to be extremely careful (less busy in the area that we will be sitting in) and may need a stack of masks. We'll be sure to sit in the first row of bleachers, as if there is anyone that has a cough, they'll be behind us. Keian is so excited!

And sometimes the good must come to an end - Keian's blood work was redone on Monday. Neutrophils had crashed from 3.16 on Saturday, to .87 on Monday -nearly critical. They will continue to drop, bringing him into extremely critical. This was much earlier than anticipated, as they aren't typically expected to drop until between Day 30-40 of this phase - we are currently on day 21. So, this means that we may be in for an extra long haul of entrapment. I felt so horrible on Monday when we were told this, as we had just finished talking about how we were going to head to the yearly trip to Bright Nights in Stanley Park on Thursday (opening day). Of course, with his counts being as they are, this isn't a possibility.

Ryan and I usually take turns putting Keian to bed and tonight it was Daddy's turn. As Ryan was tucking him in, he said "Keian the brave!!". Keian responded with "Oh, stop it Daddy". Ryan then told him that we think that he should be known as Keian the brave and that both of us were so extremely proud of him with how hard he has been fighting and how he always managed to smile, no matter what. Keian's response - "I'm SOOOO excited!!!!" Daddy - "Why?!" Keian (with a typical Keian smile that he's so well known for- "Because you guys are so proud of me!" This kid just warms my heart<3

~Chantal

Holding him close

Today Keian woke up sick. Not cold sick, he just seemed off. He vomited twice in the morning and barely ate for the entire day, but insisted he was well enough to go to visit Grandma and Grandpa. After a couple of phone calls from my Mom, we soon realized it was a little more than just chemo related sickness. He was dropped back at home just after dinner and within 20 minutes, his fever had sky rocketed up to 38.6c. When a child has cancer and is undergoing chemo, having a fever is not a good thing - it could indicate internal infection, sepsis (infection in the blood), or a flu. Neither of these are good, but the flu is the lesser of the evils. As chemo patients are immuno-comprimised, they are more suseptable to viral and bacterial infections - some of which are quite serious. I'm sitting at Children's Hospital at this very minute waiting for antibiotics to enter his bloodstream. Apparently, they won't have bacterial cultures back until Monday morning, so they are giving us a 24 hour dose by IV and sending us home. There's not a lot we can do until we have the results. Some news we were definately not expecting to hear tonight from the Doctor - they detected a heart murmur. What?!?! She says it could be a murmur that was undetected,could be benign (won't cause any problems), or it could possibly be damage done to his heart from the chemo. Yet another thing to add to his little fighting body. We will be able to discuss the heart and the blood results Monday morning with his Oncologist, but until then we wait. Keian just fell asleep - he's so exhausted - atleast we have a room in Emergency. Joren is spending the night over at my Mom's, as we'll be getting home during the middle of the night. I plan on having Keian snuggled right into me tonight. I don't think I've ever appreciated my little boy more than I have this last couple of months. He is my hero. ~Chantal

Kaptain Lasers meets kindergarten

I can't believe how fast time passes. I logged on write today, and realized it's been over 2 weeks since my last update.

What has happened these past few weeks -

In the words of Keian "This was the best Halloween EVER!" I think it's the overall fact that as he is growing, he is enjoying the fact of getting candy more and more. This Halloween was actually miserable - it was a downpour and we were huddled under umbrellas as we scoured our streets. We were out for under an hour, as he did get tired quite quickly. He managed 2 streets, before he said he had had enough, which was actually a little more than I thought. It could have also been the best Halloween to him, because of what he was wearing for his costume! Our own superhero switched into the life of the one and only, Kaptain Lasers! Not one of the pictures turned out from trick-or-treating due to the weather, so it was a good thing that I took time for a little photo op before heading out.

After being stuck at home for a couple weeks, his blood counts came up enough that he was able to continue chemo, so last Tuesday, we started on the familiar trek back to Children's (Keian calls it "my hospital"). This was NOT a good day for him. He seemed to be ok until we got to the clinic. Ryan dropped Keian and I at the door and went to park the car, since it was raining. When the nurse called us in the room to get his IV started and prepped for his LP, he appeared quite scared, until he asked me to take him to the bathroom. The door to the bathroom closed and he immediately started crying. He was upset that they would take him to the surgical room before Ryan got inside. He was definitely scared that day. It had been a while since he had been at the hospital for treatment, and as weird as it seems to say, without going to the hospital for treatment, life became a little more like it was before his diagnosis. LP’s and Bone Marrow biopsies are one of his least favourite things, and this day he needed to have an LP. My Mom kept Joren for the day, so we were able to devote our entire selves to Keian - we both hold his hand every second of it. Even though he’s very out of it, he smiles adoringly every so often and whispers “I love you”. I honestly think he is one of the few 5 year olds that are willing to show their love as freely as Keian does – we are so lucky.

His appetite is still touch and go. He’s a big, tall boy – even now with the weight loss, but it’s definitely a noticeable change. This phase is aimed at being a little easier – being that we will be going twice a week every 10 days for the duration of this 2 month phase. This is definitely an extremely risky phase for him though, as he receives IV and IT Methotrexate, which is the drug that caused his original Neurology symptoms. Speaking of which, we got the results back from the repeat MRI – not the best news. The damage (bright white areas that show on the MRI) has still remained. They had hoped it would have retreated now that his symptoms have subsided. Apparently, it could be one of 3 things: Methotrexate induced neurotoxicity (which basically means that he is extra sensitive to the drug and it causes damage to his brain, which results in neuro symptoms – last time it was slow, slurred speech and ataxia). So, if this were the case, at any given time these symptoms could return, he could get increased symptoms and they could worsen over time or even be permanent. The problem with this is that there really is no choice on whether he gets this drug or not – it’s one of the best cancer drugs to keep it from returning to his brain. The 2nd possibility was that he was born with it – which they think is unlikely. The 3rd possibility is that he has a storage disorder, which basically means that his body is unable to process lipids and figure out where to store it. It will then build up in organs, including the brain. This can cause something as simple as an enzyme deficiency or something as major as serious brain damage. So, as you can see, it’s not the best news. They tell us that it isn’t very common to see these reactions to Methotrexate, but they do happen. They took a blood test when we were there last week, which will tell us whether he has the storage disorder and if those results come back negative, we just have to watch for any additional neurotoxicity. He got his first IV dose last week, on top of the IM, and so far so good! We think positive thoughts<3

Onto exciting things! Keian went to Kindergarten for the first time on Wednesday! He was soooooo excited, it was unbelievable. I figured I was going to be emotional when he started kindergarten before he was even diagnosed, but it was different this time. Very rarely has Keian been away from us since July. To be with his Grandparents or close friends of ours is about it. With the way he feels at times and his unexpected bouts of nausea and vomiting make me queasy thinking that I may not be there when it’s happening. The hospital had suggested at the time of his diagnosis that we home school him for kindergarten, as he would be missing so much school. Ryan and I felt that it would be best to enrol him in a directed learning school, where he could at least join with the other kids once a week and then we could teach him at home the remaining time. We dropped him off at 9 am and had planned on checking on him at lunch hour, but we received a phone call at 11 am from his teacher asking us to come as Keian wasn’t feeling well. I think it might have been him being slightly overwhelmed. He finished preschool 5 months ago, and has been through an awful lot this summer. We are SO extremely proud of him for trying! In the words of Keian – “school was awesome!” He told us about how one of the boys asked him to play lego with him – he was so happy about that! He even got to go outside to play with the other kids. He says he wants to go back, so next Wednesday, we try again, and maybe he’ll feel comfortable enough to stay a little longer. Either way, I honestly don’t think I could feel more pride – this boy literally lights my entire life!!!

The countdown is on! 15 days until we decorate our tree for our favourite time of year! This year, it means more to us than ever before. We may not have a lot of money, but we have more love than ever and that's what fills our hearts with the magical Christmas spirit. We're already one of those crazy families that drive around screaming Christmas songs in the car. With Christmas around the corner, out comes our yearly tradition of the Stanley Park bright nights train - Bring on the Christmas cheer!

I'll end this entry with a couple pictures of Keian, on his first Christmas<3

~Chantal

Days gone by...

It's been nearly a month since we've updated the blog - it's been a tough month for our family.

On October 7th, we lost a beautiful woman, after a courageous battle to cancer - Ryan's Mother, Bonnie-Lynn Blundell. She will always remain in our hearts and we know she will watch over us and provide us strength to fight with Keian<3<3<3 Perhaps she selflessly gave up her fight, to surround Keian with her strength. I thank her for the gift of her incredible son, that she raised with such a powerful sense of family values - without him, we would not be Team Keian.

Keian's treatment has been pretty quiet this month - we barely got back on chemo for 2 weeks, before his blood counts crashed again. This time, the worst they've been. We're now on week 2 of being homebound. No matter how hard we feel it is at times constantly repeating day after day, it's so incredibly difficult watching a little 5 year old not being able to go to play with friends, or go to school - he's missing so much of just being a kid.

We did have a follow up appointment with Keian's Neurologist on Tuesday - we were able to finally get a glimpse of his MRI from when he was admitted for neurotoxicity back in September. Though Keian's symptoms have since subsided, there is a very strong chance he will have additional symptoms once he is back on the methotrexate. He will be getting a repeat MRI on Tuesday to form a baseline and show starting point. They would also like to compare to see if he has permanent scarring. This is one of the scariest things, aside from the original diagnosis. The methotrexate is one of the best drugs to treat Leukemia, but is one that is known for causing neurological deficits. Keian has increased sensitivity to this drug, and therefore we made the right decision to take him off the study and not subject him to the high dose.

Keian's appetite has depleted even more. We were told by his Dietician to offer him high fat meals, so that he would have some calorie intake. Despite our consistent offerings, he will either refuse or try to eat, which is usually followed by a bout of nausea and vomiting. Since being weighed last week, he has lost 4 lbs. 4 lbs may not seem like alot for you and I, but to a little boy that is fighting leukemia, every ounce makes a difference. He's needed more ondansetron this last couple of weeks, which helps to keep the nausea at a manageable level. Quite honestly, I'm extremely surprised at his energy levels considering his lack of nourishment. It's the little things now - seeing him jump up and down while playing Wii, makes me beam for the rest of the day.

Now that we have that all out of the way, we have a couple amazing things to share!

When at Keian's Neurologist appointment, we ran into his Oncologist - she had just gotten the results back from our blood tests the previous week. Ryan, Joren and I had our blood drawn to check to see if we would be a match for Keian's bone marrow. It was a very slim chance that Ryan and I would be and there was only a 25% chance that Joren would be a match. Well, that 25% chance became our reality! Joren is a perfect bone marrow match! As of right now, this is just information. We are positive with his results, so far, towards treatment and are still keeping the hope that he will not require a transplant. But, if it's ever needed, his little brother will be able to give him the biggest gift of all.

Over the weekend, one of our bestest friends, who happens to be an incredible photographer came for her weekly visit <3 This time, she came bearing her camera. She captured some pretty special moments for us. One of her good friends custom made a Kaptain Lasers costume just for Keian. Let me tell you this...the pictures do not do it justice. Keian just beamed from ear to ear the second he saw it flash in front of his eyes. This truly completes Team Keian.

To those of you that have showed remarkeable support over these last few months - we couldn't be as strong as we are right now without you. We thank you from the bottom of our hearts - for your countless messages of encouragement, meals, hugs and un-ending friendships that grow with every word. We love you all so very much<3

Back to life, back to reality

We are now almost two weeks into our regularly scheduled visits and I’m impressed by how easily we have gotten into the swing of things. When we first came back to the hospital, it was recommended to us that he be taken off of the study and administered the standard treatment. In fact, it was even the Study Chair that recommended it. Here’s where we became concerned. The study involved a higher dose of Methotrexate, which is said to potentially decrease the risk of a relapse. The down side is what we saw a couple of months prior – Methotrexate induced neuro-toxicity. We saw a slowed, slurred speech in Keian, as well as involuntary movements in his limbs. Their concern is that, due to his visible sensitivity to the drug, the side effects stood a good chance of becoming worse or even permanent. They also had the option of offering a “rescue” drug, which essentially pushes the Methotrexate out of his system quicker, therefore decreasing the chance of toxicity – problem being is that they aren’t certain that it only rescues the body from drug. There’s a possibility that it may rescue the Leukemia cells, as well. The decision was ultimately ours, but how do you choose?

We decided to look at it based on quality of life. The chances of a relapse were still relatively low on the standard treatment, and the chance of side effects were reduced as well. He will still receive the Methotrexate, but at a lower dose than if he would remain on study. We believe that Keian will continue to be the strong boy that we know he is. He has been looking great throughout the treatment, had very few periods or fatigue and a handful of moments of sickness. His response has also been great so far - being a rapid early responder and being officially in remission, as planned. We want to give him the best fighting chance, without affecting how he enjoys life.

~Ryan

We haven’t had a lot of time for things, but this past weekend, Ryan and I were able to get out to enjoy ourselves a little. Ryan went off for a boys night and played Beer Pong and I went out for a girls day and got a pedicure. I think it’s important for us to get out sometimes together, and separately, especially with the stressors we face weekly. Our marriage is stronger than ever – we pull from eachothers strength and fall in eachothers arms when we need to!

We’re nearing the end of the 2nd week of chemo treatment after the nearly 3 weeks of being at home. With that, comes low numbers again. We’ll be having a quiet Thanksgiving dinner this weekend. Though at times it may seem we don’t have much to be thankful for during this all, we definitely do. We have a beautiful little 4 month old that is happy and giggly and growing into a “little” Ryan. We have an absolutely amazingly tough, brave little 5 year old that has shown us how to appreciate every single day, every single second. Ryan and I are not only strong as a man and wife, but as a family.

I love knowing that we can still have fun and make life as fun as we can for Keian – he would have loved seeing his Daddy robot dance tonight, haha. We can all still make eachother laugh – we’ve got that, we’ve got eachother, we’ve got everything. So much to be thankful for <3

Wishing all of our wonderful friends and family a Happy Thanksgiving! May you always be thankful for what you’re given! Love to each and every one of you!

~Chantal