There's no place like home

We’re home! And wow, does it ever feel good. Things are a little more back to “normal”, or at least the closest it can be. It only took cuddling and sleeping in his own bed one night before he awoke a different boy from what we’ve been seeing this last week in the hospital. It was really hard seeing how quiet and withdrawn he was during this recent stay - he would barely even acknowledge when someone talked to him. We managed to get into the patient kitchen on the ward to make dinner as a family only once, as most of the time the smells were uncontrollable on Keian’s tummy. Ryan and I had to take turns heading home to sleep in the evenings with Joren, but on Friday evening Grandma and Grandpa took Joren for the night so that we were able to spend some quality alone time with our special biggest boy. We attempted to change things up a bit this time by bringing in a lot of crafty things - we painted, put together puzzles, played games, read books and watched movies.

He seemed to tolerate the chemo he received daily pretty well, except for the appetite suppression, vomiting and nausea – whoa, when I say it like that, it doesn’t sound like he tolerated it very well, but really, compared to what could happen, they are the lesser of evils. The smells are one of the most major things, as they trigger bouts of nausea and vomiting – note to self: bring trays for EVERY walk we take, as sometimes it’s not always possible to make it back to his room. By Thursday he was off isolation – for the first 3 days of admission he was confined to his little room. But, I am happy to say that C-Diff remains no longer! It’s funny how he was begging to get out of the room and then as soon as he’s off isolation and we wanted to go for a walk, the first thing out of his mouth was “how long does the walk have to be?” We've been noticing quite a few changes with his hair lately. Not only has he almost completely lost it on the top of his head, but the parts that are still growing, much of it is blonde! Yes, blonde! His eyebrows have been lightening, as well. We've been told that after a long bout of chemo that these things have permanently changed on some patients in the past. You never know, Keian might end up looking like Luke Skywalker after all - Keian would be in his glory. Luke Skywalker may have to take some pointers from the best fighter I know!

Today, Keian tried to go up stairs. His legs are very weak and have lost a lot of muscle tone – he isn’t able to go up even one stair on his own, without his legs buckling under him and falling. Only a few short months ago, this is the same boy that ran around the kitchen island a million times. His appetite is now completely non existent. He has had one scoop of ice cream and one piece of turkey bacon for the entire day and wasn’t even able to keep that down. I’ve been giving him regular doses of Ondansetron and Gravol, but they do very minimal to help. He will require the NG feeding tube for transplant, but they’ll likely put it in much earlier as he’s already hit the level of concern for nutrition. The facial and torso swelling that’s been so imminent this last month or so is slowly dwindling down. I have to admit, I might just miss those chipmunk cheeks a little! Don’t get me wrong, I love taking care of my boy, but it’s a whole different type of taking care when he can’t do much on his own. We try to get him to do as much as he can on his own, but when he can’t go up stairs or get in the car, it’s so hard to watch.

The hospital called today and set a tentative OR date for his VAD removal and CVC insertion. His VAD in his chest is not able to accommodate the medications needed during transplant, so they are replacing it with a central venous catheter. This gets us one step closer to transplant, but also one step closer to me being scared out of my mind (as if I’m not already). There is so much that his little body needs to go through in anticipation of the transplant – Full body radiation, brain radiation, surgery to remove his VAD and insert the CVC, treatment to eradicate his entire immune system and intense chemo. He’s had wonderful nurses this last week – I ask A LOT of questions and when they take the time to explain everything I need to know, it really shows how devoted they are, not only to the kids, but to the parents. To think all of this happens in the next 6 weeks, as we gear up for a long haul – it’s slightly overwhelming. We will be staying either on site in the hospital trailer or at Ronald McDonald house for the duration of his stay and perhaps after, as he is required to be near by the hospital for the first 100 days following transplant.

Ryan and I have to give Keian daily injections of GCSF , which is to help stimulate his neutrophil recovery. This won’t keep his counts from going critical (they are already there), but they will keep them remaining critical for as long, which therefore keeps the window of increased risk of internal infection smaller. They inserted a port like IV catheter that stays in his thigh and we inject the solution everyday at home. Since it is only stable for 5 days, we will return to the hospital on Friday for treatment and replacement.

Over the past 6 months, we’ve learned what is truly important, we’ve learned to prioritize and not to waste our time. We’ve been reminded about the true beauty that is revealed by friends and family in times when you need them most. We’ve learned it’s ok to be overwhelmed and sad, but to learn how to turn that sadness into strength that allows us all to endure the next day. We’ve learned how someone so small can become our biggest inspiration and we’ve learned that you can never say I love you, and mean it with every inch of you, too many times.

"Look to this day, for it is life. For yesterday is already a dream and tomorrow is only a vision. But, today well lived makes every yesterday a dream of happiness and every tomorrow a vision of hope."

Afternoon Delight

We've been in hospital now since Tuesday morning. Keian has been receiving daily chemo doses of Etopiside and Cyclophosphamide - when I hear those names, it makes me think of some sort of pesticide poison, and I guess really, it is. Both of these drugs are very hard on the bladder, so he's heavily hydrated with "Mr. Water".

He stopped his Dexamethasone last Friday and his appetite that we've grown so accustomed to eating the fridge clean, is gone. He's been vomiting and gagging quite often this week. His Kit Kat obsession has officially been thrown in the bucket - I made the mistake of bringing him one today from the grocery store and even looking at the package he gagged. We're going to try to play around with some Gravol on top of the Ondans to see if it makes any difference. He did pretty good tonight with his dinner request though - tacos...he even made them up himself! They have a kitchen on 2B for the families to use, but wow, do they ever need some things. I think they have a total of 3 plates and I was stuck using some towels to take stuff out of the oven.

The antibiotics are definately doing their job on his C-Diff and in conjunction with that, he's finally off isolation! So nice to actually be able to go for a walk with him - kind of funny though, as soon as he found out he could leave the room, he asks; "How long does the walk have to be?".

We've started our GCSF training - on Sunday, Keian will need to get a port put into his leg, and every day while we are home for the next couple weeks, we'll have to inject him with the drug that will help to shorten the cycle of low neutrophils. Unfortunately, it won't keep them from getting low, but atleast it will shorten the duration to which he will be suseptible to internal infections. We have also had our meeting with the Physiotherapist here at the hospital. Because of his peripheral neuropathy, he has very tight muscles and limited strength. They also noted that his trunk and hip muscles have decreased strength and mobility. They may consider putting orthotics on his feet while he sleeps in order to keep them pulled up. We've been doing our stretching exercises daily - Keian definately prefers the clam slap with his legs as he tries to catch our hands.

His hair is now pretty much gone. It's slowly been coming and going, but it's so thin on the front that it's pretty much non existant - especially if you compare how thick his hair was during the summer. Buuuut, it will grow back and be just as beautiful as it was! Something we have noticed though, is that his eyebrows and eyelashes are getting extremely light...nearly blonde. They tell us that every person that receives chemo is different - there are so many different treatment protocols and each chemo has many side effects, some that affect fast growing cells, which is why hair is one of the first to go. When his hair finally does grow back, it may even be a different colour or texture!

Earlier in the day yesterday, I noticed a Mom and Dad in the hall, noticeably distressed. Surprisingly, this isn't that usual to see, as I find that most families tend to stay clear of a lot of interaction with others. I was talking with Keian's nurse and she mentioned that the news those parents were told was not good. Their little boy, maybe a couple years older than Keian, was just diagnosed with terminal brain cancer with no hope of treatment. My heart immediately sank and I found myself thinking about this family for the entire day. When I was leaving last night, I saw the Mother sitting on the ground outside of the Oncology ward crying. She looked up and smiled as I walked through the doors - it was almost as if I could see exactly what she was feeling when I looked into her eyes. It's like an unspoken word and I truly understood how devastated she was feeling. I bent down and held her hand and stroked her hair. I cried the entire way home and couldn't stop thinking about what the future holds for their family. I pray for peace and precious memories with their boy.

Ryan and I have been having to take turns going home in the evenings with Joren, as he's not able to spend the night at the hospital. Joren is spending the night with his Grandparents tonight, so that Ryan, Keian and I can have a family sleepover...love that. And, what a perfect night for that to happen...while we were all sitting around giggling and horsing around, K's Oncologist came in with a big smile! We've been waiting for our results for the storage disorder test - back in November, Keian tested positive for the abnormal VLCFA storage disorder called Adrenal Leukodystrophy, but they were unsure if it was the chemo that damaged his liver or if he truly had ALD. I haven't talked too much about the ALD with anyone besides Ryan, as the outcome, if he was truly positive, was not favourable. Also, if Keian was, then Joren also had a chance he was, and therefore, they would be unable to harvest his bone marrow for Keian. I am beyond over the moon happy that her smile made our day...or our weekend for that matter! Keian and Joren were both negative for the disorder!! This means that the transplant can go ahead as planned! It feels like lately all we seem to be receiving is bad and unfavourable news and this felt so incredible to finally be able to truly smile!

"Wondrous is the strength of cheerfulness, and its power of endurance - the cheerful man will do more in the same time, will do it; better, will preserve it longer, than the sad or sullen" - sometimes this is one of the hardest things to do. Having said that, we will never take a minute for granted, we will have fun, show love and appreciation, make the best of our days and stay strong for our sweet boy<3

"Our greatest glory is not in never falling, but in rising up everytime we fall"

Why do we fall? So we might learn to pick ourselves up.

Early Wednesday, Keian woke from sleeping calling for us. He immediately started vomiting and told us he needed to run to the bathroom. This continued until I decided that it was time to call the hospital. To make a very long day easily understood - Keian was admitted to the hospital for 2 reasons. He was positive for Clostridium Difficile, which is basically a bacteria that causes severe stomach pains, vomiting and diarrhea. While he was in the clinic, they drew blood and discovered that his liver enzymes were incredibly high - extremely high. Their major concerns with these results were that Leukemia may have relapsed in his bone marrow, or that his liver has been damaged by the chemo. The only thing worse than hearing our child has cancer is that the cancer has relapsed. This was an unplanned admission, so it was the one time we weren't prepared with our overnight bags. Keian asked for Daddy to stay, as one of us had to go home with Joren. I am angry...beyond angry. I drove home that night so angry and hurt that I had to pull over. I literally couldn't stop the tears. I've been asked if we've been praying for Keian and the first thought that comes to my mind is that we haven't been as much as we possibly should. The only way that I can describe the feeling is anger. I'm so angry that such a beautiful little boy is forced to undergo all of this on his little body. I'm angry that he's missing out being with his friends. I'm angry that he's sick and I'm not. I'm angry that he may never have the chance to be the Daddy I know he'd be, due to the chemo. There's no other way to explain this other than that. I've had a rough couple of days trying to put all of this information together. We're basically thrust all of this information and expected to package it neatly into a box and move on. "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do."

The night went over with no problems - Keian was started to Flagyl for the C-Diff and continued his chemo as usual. Thursday morning, as I was getting ready to pick him up from the hospital, Ryan called to tell me that one of his test results came back from November. This was a test they ran due to the MRI results that showed cloudy areas in his brain. They were concerned that the changes may not only be from the Methotrexate toxicity, but perhaps from an existing lipid storage disorder. Keian's results came back abnormal, which means he is positive for the disorder. Not only does this bring on additional health concerns for him, but if it turns out that it is an inherited disorder, Joren may have the same results. If this is the case, they will be unable to use his marrow for Keian's transplant. Joren and I will be tested to determine the genetic line.

today, we were told that his treatment plan will change slightly due to nature of his Leukemia presentation and that they will now be treating him as the extremely high risk. This also means that he will get largest dose of the best drugs they have. While we await results from his bone marrow biopsy, which will likely be by Monday afternoon, we will also be admitted on Tuesday for 6 days. During these 6 days, Keian will receive chemo drugs that are known for damaging the kidneys and liver and therefore needs to be watched 24 hours a day. After these 6 days, he will be able to come home for 2 weeks. He will then be readmitted for 1 month, in order to receive high dose ARC (cytarabine) - this given at high doses, we're told has serious side effects, one of which is a 5% chance of mortality, due to uncontrolled infection. After this, he will start his brain and total body radiation to condition him for his transplant. This will completely strip him of his immune system with zero chance of recovery without rescue stem cells. We've been told that within 3 weeks, we will be admitted for a a minimum time of 3 months and will not be able to leave his room during this time.

It truly feels that our world is crashing in upon us. We've remained strong through all of our struggles and he has been the most incredible fighter - I couldn't have asked for more. We have been and will continue to remain positive and shine that positivity in our everyday life. Someone told me the other day that sometimes you have to fall, so you can pick yourself up and become strong again. This is truly what's happening. I look at him with such admiration, but yet at the same time, it breaks my heart. He is so tired and weak. I watched him tonight struggling to even get off the couch and he can no longer get off the floor by himself. The pain he's feeling in his legs, as well as the decreased strength due to the peripheral neuropathy has not only damaged his physical body, but also his spirit. But yet, throughout all of this, he still finds the good. Tonight, as I was rubbing his legs, I couldn't help but tear up. He looked at me and asked me why I was crying. I told him that I was crying because I wished he wasn't sick. He responded with; "I just keep taking my medicine" clapped his hands and said "then I'll be all better".

Tomorrow, we will wake to see a smiling little boy, who reminds us every second of every day what it truly means to be beautiful.

"You never know how strong you are, until being strong is the only choice you have"

Good things don't always come in small packages...

I have to start off by saying that Christmas was absolutely AMAZING! My heart was literally brimming with joy this year - Not only was our family complete with our two happy, beautiful boys, but we had unbelievable people dedicated to making our Christmas unforgettable...and it was just that. Once again, we will never be able to truly thank all of these wonderful people that made this Christmas so unforgettable and stress free. I feel the love that is given to us on a daily basis, some by even complete strangers. This is truly what is giving us the strength to handle all that we've been dealt this year. We've had a relaxing Christmas season, so far, and are ready to ring in the new year, leaving the year 2012 behind. A magical little boy entered our lives in June of this year, but not far behind was our first special boy about to start the fight of his life. In 2013, we will celebrate our first year with our wee one, as well as our special K's unrelentless vigor and courage.

Keian was so excited for Christmas Eve to come - it actually reminded me a bit of those movies you see where the kids keep repeating "Are we there yet?!". When we were little, both Ryan's and my family did some special little things that we chose to continue with our own. When Ryan was growing up, his family use to drive around to look at the Christmas light displays on Christmas Eve - this is something we created to be a Blundell family tradition beginning last year. My favourite thing ever when I was Keian's age, and well to be honest, well into my adulthood, was that I was always allowed to open 1 present on Christmas Eve. It was always the same thing - Pajamas! Beginning on Keian's first Christmas, he has sat in front of the tree and ripped open a present containing...yes, you guessed it, Pajamas! This has since become one of Keian's favourite traditions!

After baking cookies for Santa and tucking the boys in for the night, we awaited for Santa's arrival - he must have had his elves working night and day. Santa must have also known that Keian has his own "team" that stands strong behind him!

Christmas morning wasn't quite what I expected it to be. I expected Keian to be jumping up and down screaming in excitement. Though he was ridiculously excited when he walked out of the bedroom and saw that Santa had come, he was more concerned that everyone else got their presents first. And yet another reason he reminds me of myself - though I always loved Christmas and honestly the gifts that came along with it (what kid doesn't), I got so much enjoyment out of watching others open their presents first. Keian kept saying "I'm so excited to see you open your presents!!"

The meaning of Christmas and the memories from this year will remain in our hearts forever. I can't believe how lucky I am to have 2 amazing, strong, beautiful, crazy boys to call my own. They both help me to strive to be the best mother I can be

We were also able to take a bit of a break from treatment, as our first appointment at the hospital following Christmas was yesterday. Relaxing was quite easy, as Keian's energy seems to have gone missing. Lots of cuddles, which I certainly never complain about. Though this Dexamethasone is definately doing it's job, it's doing numbers on my little boy. His mood is unbearable at times, his appetite is through the roof and then some (this is a good thing, as it helps him to gather strength), his skin is like leather on his feet and the swelling in his torso and classic 'moon' face have appeared rather quickly. It's hard to wrap my head around the drastic difference a short month can bring. He has recently been starting to complain about the pain he's feeling from the tummy distention.

A lumbar puncture was redone and his CSF came back clear again! Yay! It was an unexpected long day yesterday, as his HGB was low and required a transfusion - tag another 4 hours onto the already long treatment day and you have one very bored boy. He returns next Friday for the last chemo treatment and lumbar puncture for this re-induction phase. It's hightly likely that he will need another transfusion -platelets (which help with blood clotting). He's been getting alot of nosebleeds, which is one of the few signs to watch for. He will also be getting a repeat bone marrow biopsy to ensure that things have remained in remission within his marrow. He has also been complaining that his throat burns when he drinks certain things - namely orange juice. We've also noticed he has started to develop sores on the insides of his cheeks. Mucositis, the Oncologist tells us. Although the two sores present in his mouth that are visible look as though they are healing, this won't be the end. Nearly every treatment Keian will receive in the next 2 months will lead to increasing sores, in count, as well as severity.

He's gained close to another 5 pounds this week, surpassing my 10 lb gain goal I had hoped for (now, it's time to up that goal to 15! - seems weird working so hard to get him to gain weight, when I've attempted to take weight off myself throughout my entire life)

We've yet to have anything set in stone, but we now have a tentative plan for the 2 months following up to transplant. Beginning as soon as next Tuesday, we will be admitted for the first of our 5 day hospital stay. He will have two consecutive consolidation phases, which is to make sure that the remission is consolidated and that he remains in remission prior to transplant. Each phase is 3 weeks, but if his blood counts are not at the required level, that will be delayed. The first 5 days of each cycle will be spent in hospital, due to the potency of the chemo. During these 2 cycles, Keian will be undergoing brain radiation, to attempt to kill the remaining leukemia cells that may be hiding in his CSF - unfortunately, due to his early relapse, he will require a larger dose than originally anticipated. He will also require surgery to remove his VAD and replace it with a different type of central line that will allow the numerous medications required during transplant. He will then be admitted a week prior in order to receive full body radiation and administer drugs to entirely strip him of his current immune system - this will be done in the hopes that it will prevent his body from rejecting the new cells. When Keian is ready to receive the cells, Joren will be admitted to the hospital and will undergo bone marrow retrieval - he will be going under general anaesthetic and will stay one night in hospital. His Oncologist assures us that she will try her best to get Joren a room in transplant isolation, so that we will be able to be with both of our boys. They tell us Keian's hospital stay will be a miniumum of 5 weeks - but nearly all transplant patients will need to be treated for atleast 1 serious infection during their stay (which would extend his stay) We are to be expected to be in hospital for approximately 2 months,but have been told to not expect anything with regards to our length of stay. Luckily, they do have a trailer on site, that we will hopefully be able to gain access to for the first 30 days, so that both of us, as well as Joren will be able to be close. Things are definately moving much faster than I expected, as Keian could be receiving his new cells as soon as the first couple weeks of March.

With 2012 coming to an end, we received our final less than favourable news. Keian has developed Peripheral Neuropathy - a direct side effect of Vincristine. He has decreased reflexes, decreased strength, muscle atrophy (wasting of muscle) and foot drop. Most of the time these effects are temporary, but once they come to head, they will take a long time to subside. He's been complaining of leg and foot pain, which is now explained by this diagnosis. I've been massaging his legs daily for the last couple of weeks, but now that I know what we're dealing with, I've started some strenthening and stretching routines with him until Physiotherapy sets a plan for his treatment. It's times like these that we have to try to remember - Worry does not empty tomorrow of its sorrow, it empties today of its strength"

"When life knocks you down, you have 2 choices. To use the little strength you have left to fight your way back up, not knowing when or why you could be knocked back down again, or just stay down. I guess that is why we call it courage, the courage to stand back up when life gives you hundreds of reasons to stay down"

Merry Christmas! Yes, you could say that!

The last couple days have definately been challenging. The drugs have been affecting his mood quite drastic. He has been very angry, constantly complaining, or crying about things he wouldn't have ever given a second thought to. Though this is one of the side effects and we have seen levels of this reaction in the past, this is definately not as we were expecting. Our little guy is still there and he definately shows heart and love, even though he's having a difficult time handling all of this. I'm so very lucky that he still loves his cuddles - it's definately alot harder holding him 'like a baby' with this weight gain this past week! Yes, this is one of the very best things with this Dex - his increased appetite. This last 4 days all he talks about is food - one day he wanted a hot dog so badly that he cried throughout the day - "this is the worst day of my life!" And yes, he said this because we said he had to wait until the next day to have another hot dog. I'm over the moon happy to announce that he has gained close to 7 lbs this last week!

Last night wasn't very kind to our boy. When he was washing up for bed, he kept complaining that his leg was sore. When I put him to bed, he asked for me to prop it on a pillow and kept moaning. He woke up at 2:30, while not only in pain, he was incredibly emotional and moody all at once - this is extremely hard to see. Unfortunately, the few hours of rest that he got didn't seem to help, as he woke up crying saying it hurt to even walk. Our dilemma is that we aren't able to give him Tylenol, as it masks a fever and we're not able to give him Advil, as it affects his platelets. When he was initially diagnosed back in July, he was on Prednisone, which did give him some joint pain, but since Dexamethasone is much more potent, it's seemingly affecting his bones and joints to a more extreme level.

Though today started off rough for all of us, by mid morning the day started to take a turn for the better. Keian's sailed through his lumbar puncture and handled his treatment like the champ that he is. Today, he had 3 chemotherapy drugs administered intrathecally during his LP. He also had 2 administed through IV and 2 administered orally. He's been quite tired most of the week, but he hasn't been nauseated once. His counts are still critical, which limits alot of what we can do. The good thing is that with Christmas coming, he prefers to stay close to home!

Back in November, Keian spent some time with a good friend of ours and as they were talking about his hospital stay, he mentioned to her that he felt bad for all the kids that had to stay in the hospital for Christmas and wouldn't be able to be at home with their family and said he wished he could do something for them - combine a little boys wish, with a beautiful, giving photographer and her amazing clients and you have alot of happiness all around. After Keian's treatment, he left with a wagon that was filled to the brim with gifts for, in his own words, "kids that are going through just what I am" and headed up to the Oncology ward. He was soooo proud, but we were the ones beaming with pride. He kept repeating; "I feel so happy that I'm doing this, I just know that the kids are going to have huge smiles on their faces. I'm so happy!". I have always felt the true meaning of Christmas, but today, my own little boy made by heart grow more than I knew possible. This is what Christmas is all about.

Well, though it may not seem possible after he helped Santa in a big way, our day did get better again - much better infact! Once a lumbar puncture has been done, it is sent to lab, where they do a smear to conduct their initial assessment of the spinal fluid. It is here where they are able to see the leukemia cells. Once the smear is examined, they must delve further to determine which cells are "normal" and which are blasts (leukemia cells). After reaching a final count, results are forwarded to his Oncologist, who then conveys that result to us.

Our phone rang and of course we were on the edge of our seat..."Keian is all clear, he is in remission again! Merry Christmas!" Yes, you heard me right...our boy has fought his way through not one, but two Leukemia attacks on his body! This will not change his course of treatment or the necessary transplant, but what this does mean is that his body is still very sensitive to the chemo, which is the best news EVER! The very best Christmas gift that we could ever receive! I have always known that we have raised a beautiful, strong, amazing little boy, but he continues to find ways to make me fall more in love with him on a daily basis.

"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles" - you my beautiful Keian are just that, my hero. Keian, my son, always remember - What lies behind you and what lies in front of you, pales in comparison to what lies inside of you. You inspire me every second of every day. I love you!

Some days there won't be a song in your heart. Sing anyway.

Keian has been on Dexamethasone for 10 days now - this is a steroid similar to Prednisone, only approx 6 times more potent. There are definately a couple great things that come with this, but the one we've been having a little difficulty in finding a balance with has been the mood and personality changes that have come along with it. One second our little man is jumping on my lap, cuddling and talking sweet and the next second he is getting angry and yelling. This is to be expected, but was no where near to this extent with prednisone. It's hard to find a middle ground in order to be a parent, while trying to remain understanding as to why these changes have came to fruition - on one hand, you want him to know that this behavior isn't acceptable, and on the other hand, this drug is causing him to be this way. Now, the absolutely amazing thing that comes with this drug is his appetite and WHOA, has it come back with a vengeance! He has gained nearly 3 kg in 10 days and is showing the bulk accumulate in his cheeks and belly. This is our opportunity to feed him as much as he'd like, as it will help him to gain strength and allow his body to get ready for the rigorous treatment to come!

He's back to having daily naps, as his body is seemingly extremely tired. He's always been great at going to sleep, but now he's actually begging to go to bed. Tonight, we set him up in our bed to watch a movie on his DVD player, so he could watch Megamind for the 100th time!

Keian's blood counts are currently at critical level once again, but are being masked by the effects of the steroid. With that comes alot of home bound activities - we've been trying to get him out a bit, by driving around to christmas light displays and areas we know that go all out for the holiday season.

This weekend has also proven the power of one special little boy. How he can increase hope, bring joy, encourage smiles and build new friendships. We have been given unconditional love, compassion and dedication - because of this, we can begin our week with a new strength that has risen to the surface. To all of you beautiful women and men that have done this for us, I will never truly be able to thank you enough. We have our strength continuously renewed because of you!

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell"

~Chantal

Heavy on the heart...

Heading into the 2nd weekend after being told Keian has relapsed brings on even more emotion. Some of this emotion has brought me to my knees throughout this week, and some has lifted my spirits.

Keian has been extremely tired this week and I've been noticing he has a similar appearance to when he was first diagnosed during his inital week of chemo- his eyes appear slightly sunken and their colour has seemed to take on a darker hue. He has been spending our outings sitting in grocery carts with his head resting on a blanket and he has been asking for us to carry him alot. Even tonight, he said that his back hurt too much to walk to the bathroom without help.

He's been asking alot more questions this week about his illness and hospital stays. I think that with all of this, he dislikes being away from home the most - that would explain the fact that he's been wanting to stay close all week. As we cuddled before bed one night, he told me "I don't like being sick, but I'm really excited!". I asked him why and he responded with "Because when Joren helps me, I'm gonna be all better and then you'll have back the old me!". It's times like these that just rip me to shreds. I'm trying to be the most positive I can possibly be for him, but many times that negative is just creeping around the corner waiting to pounce. Right now, I have to focus on just that...the right now. If I start thinking about the what if's or the possibilities or complications then I can't be the strength that he needs to get him through.

Today was an early day at the clinic - his first triple intrathecal chemo since relapse and day 8 of the re-induction protocol. Goal=get him into remission during the first 30 days of re-induction.

Our news of the day - Results came back on Keian's MRD test (Minimal Residual Disease). This was to determine if he had an isolated CNS relapse or if this included the bone marrow. He was negative for the bone marrow relapse! In order to be considered a positive, you would have above 5% blasts (leukemia cells) - Keian was sitting at 1-2%. What the MRD determines is the cellular level of these blasts that are seen. After reaching remission in August, his MRD level was sitting at .08, which moved him into the "intermediate risk" category. His MRD results this time, were sitting at .6, so it has increased. Likely, he was on his way to a full relapse in the bone marrow as well, but it was caught before that came to fruition. This means that he will fall into the 45-50% category for him to achieve remission and for it to stay there. Albiet not perfect, it is a far cry from the 15-20% that it would have been if bone marrow relapse was involved. Last week the leukemia counts in his CNS were nearly 300. After just receiving a call from his Oncologist, we were informed his counts from today's lumbar puncture revealed that he is sitting at about 1 in the smear! Likely that means his total count would be close to about 10. In one week, the number has gone from nearly 300 to 10! She did tell me that they weren't expecting it to happen that quickly. He is not in remission...yet, but she seems quite hopeful that he will achieve that within a couple of weeks. What an amazing Christmas gift that could turn out to be!!!

I keep repeating to myself that if one good thing were to come out of this, it's Joren's ability to help Keian. They've mentioned to us that there have been families of 5 or 6 that don't have a match atall. They're also hoping that Joren's healthy cells will act as a natural chemo and fight his leukemia cells. It will be a very long few months, and even longer recovery, but once again, he shows us his strength and the fight that he strives for every minute of every day. Everyone asks me "How do you do it? How do you stay so strong?". My answer would be "How do I not?" This isn't about how, it's about why. And right now, my "why" is laying snug in his bed next to me.