30 December 2012

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"

22 December 2012

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!

17 December 2012

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"


14 December 2012

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.

12 December 2012

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.



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"