26 August 2012

Thank you

Thank you... These two words can no where near express the amount of love and gratitude that we feel for those of you who selflessly support us in so many ways. It's so heart-warming to know that we are thought of by so many people, some of whom we haven't had the pleasure of meeting.

At only 5 years old, Keian has touched the lives of so many. He has taught us this last 7 weeks to strive to live each day to the fullest and to never take a minute for granted. Our strength will continue to carry him, as your strength will continue to carry us. As Keian grows into a man, he will come to realize that the world is a wonderful place if people continue to unconditionally give their light and love.

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. That strength may come from within, but also from others around us. For that, we thank you.

To our best friend, Megan - You have proven that family is not always about genetics or legal binds. Your compassion and commitment you have shown to our family is beyond anything we could have dreamed. On a daily basis, you remind us the importance of love and laughter and to always keep our focus where it needs to lie. We are so overwhelmed by your love and kindness and you will forever be engrained in our hearts. Thank you for making our days just a little bit brighter<3

To my parents and our amazing friends and family - Your support not only strengthens us during the time we need it most, but also strengthens the bond we have with each other. For those who have given so much of themselves, we will never forget. We love you all for helping us to grow to be the parents we are today!

To our incredible little boy, Keian - this is our wish for you...

Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth and love to complete your life.

We love you more than anything<3

21 August 2012

Lions roar...Part 2 of 2

Today was an early, early day - up at 4:45 a.m. to pack for the hospital on treatment day. I would have never realized how long it takes to get a family of 4 up, fed and ready for the trek out the door by 6:30. Joren has been wonderful this last couple of nights, sleeping for close to 6 hours without waking up! With the lack of relaxation lately, it's well needed. Wait...relaxation? What's that? Dinner should learn to make itself - it really should. It's quite the feat to try to keep up with making sure the family is fed with healthy, hearty home-made foods when we're rarely home. I need a cook.

They decided today at his treatment to skip his Lumbar Puncture, as they need to allow his body to return to base-line once his current symptoms from last week subside. So far, his blood work is coming back pretty stable - crash is expected to happen on day 7-10 of Consolidation - today is day 7. We go back tomorrow and Thursday for more Chemo and then on Friday, they will re-run his bloodwork. They are anticipating that he will need more transfusions. They are also warning us that we will need to stay away from public places for at least a week during this time, as his immunity will be wiped out.

Today, on the way home from treatment, Keian's Grandpa had arranged one last stop. BC Lions were practicing today and they wanted Keian to come out and see what they do. After meeting Wally Buono and Mike Benevides, he was invited to head out into the field and break the huddle! How awesome is that! Keian is definitely a shy boy and being surrounded by that many big football players can feel slightly intimidating, but the guys on the team made him feel like he was the biggest man there. After breaking the huddle, he was lifted on top of their shoulders for a cheer. He came off the field beaming with a smile and a memory he will likely never forget! What a great day!

Words cannot express how heart warming it is for us to see all these kind, wonderful gestures that have been shown towards Keian and our family during this time.

Keian, you so freely give your love and show your light and it will be returned every day. We love you and will continue to fight the fight right along with you and on days where you cannot fight, we will carry you.


Lions roar...Part 1 of 2

This weekend was a busy weekend for our little man. One of those things keeping him busy was a man-date, with his Daddy, to the BC Lions game on Sunday! This was Keian's first time to a Football game, though he has been interested for a while now - of course it doesn't hurt the fact that his Grandpa played for the BC Lions, back when he was a young guy himself.

They had awesome seats, thanks to the Reebok team - A couple of months ago, Ryan won a contest on Twitter, which included 2 tickets to this game! They were only 8 rows up! A couple of hot dogs and ice creams later, the game began - so happy they won on the first game he got to see live!

As they walked out of the stadium, he turned to Ryan and said: "When I grow up, I want to play for the BC Lions!". The possibilities are endless, my boy.

19 August 2012

Falling from cloud 9

This has been a long week. I wish I could say it was un-eventful. On Tuesday, Keian went into the Oncology clinic for the day to mark the start of his Phase 2 Chemo (Consolidation). As always, he was the bravest of brave - the day began in the Procedure room, where he was sedated for his Lumbar Puncture and IT Methotrexate injection into his spinal fluid.

Throughout the day, we noticed some changes in Keian. I told his Nurse numerous times that something was "different" about him. His speech was very slow and shaky. He was having tremors and ataxic movements in his arms, legs and head. I described it as a bobble head appearance. They would watch him and say that everything "appeared" normal. At 4 pm, we left the hospital and I rode in the back of the truck with Keian. Almost immediately, I realized there was a remarkeable increase in these symptoms. I called our Clinical Nurse and described the differences - she suggested that over the next 30 minutes we watch him to see what happens and then to call her back. By the time we made the treck home from Vancouver, we were feeling very uncomfortable with what we were seeing. It wasn't our Keian. Another call into the hospital, but this time to the Oncologist on-call. She wanted us to bring Keian into the ER at Children's. Once we were admitted to the exam room and the Oncologist performed a neuro exam, she said she didn't feel comfortable sending us home and she wanted to admit him.

We were admitted that night and he was on close watch - being woken up every 90 minutes for the nurses to do a full exam of his state. They chose to contact Neurology, who then came to conduct their Neuro exam. There were 2 Neurologists. After spending at least 60 minutes to complete a thorough exam, they told us that all the findings were "normal". They continued to attribute the tremors can be caused by some of the chemo meds, but that his apparent slow, shaky speech was because he was shy. Wow. Our boy is definitely shy, but NEVER around his parents. The findings may be normal for other children, but it was NOT normal for our Keian. I asked what we were going to do, since their "findings" were apparently normal. I felt like I was being looked at like I was an overprotective mother who was off her rocker. She loosely made reference to a possible MRI, but that given Keian's age, he would need to be put under General, so that he would stay perfectly still. We assured her that we want the MRI done, but that we did not feel he needed to be put under. I almost got the impression that she was trying to talk me out of demanding the MRI, by making me feel I was wrong for subjecting my son to another bout of General.

The next day, he was taken for the MRI, with no General I might add (they didn't even have to tell him once to stay still). I really believe that he handles these things better than we ever could. I also believe that the attitude and positivity that we exude helps him to be as strong as he is. That is my goal - to make this whole journey as positive and comfortable for him as we possibly can. He deserves that from us.

After spending 4 days in the hospital this week, we finally got the MRI results. I urge all parents reading this to always trust your gut when it comes to your kids. You are their best advocate. After being told that the findings were all normal, even though his symptoms persist even to this minute, the findings on the MRI were hard to argue. There were mild changes noted, as well as inflammation in his brain. They assure us that since it was caught early and the symptoms were considered mild, in their opinion, it would be temporary. The symptoms will persist for some time, but will eventually diminish. Keian's diagnosis - Methotrexate induced neurotoxicity. They will need to remove the IT Methotrexate from his protocol and replace with another drug that can be just as effective at eradicating any remaining leukemia cells that remain in his CNS. We will continue to focus and stay wide awake.

I've always strived to be kind hearted, but Keian makes me strive harder. I feel I need to make a difference...and I will.

You encourage me to be the Mother you are so incredibly deserving of my beautiful boy. You, "Joreo" and your Daddy are the best boys I could ever ask for - I am so lucky <3

12 August 2012

Buy me some peanuts and cracker jacks...(and hot dogs and fries and donuts and popcorn and ...)

What a great day we had yesterday! Keian was sooo excited for the baseball game and he even got a cool bonus! As we were waiting for the gates to open, one of the security guards held out a ball for him. He was even lucky enough to get some autographs, or as Keian would say, "designs" on his ball. From the second we walked through the doors, he drew attention to the popcorn. For the next hour following, we were reminded every minute of how much he wanted popcorn - this was also after the big hot dog and fries he already ate. If you ask Keian why he is always hungry, he pipes in with his attempt at a masculine voice with "prednisonnnnnne" (during our hospital stay, we gave his meds names and he always thought prednisone sounded as if it were a superhero).

We were lucky enough to be there on a night where they had fireworks after the game - this was Keian's first time seeing fireworks, besides of course the miniature displays he has seen on Halloween. I was actually quite impressed with the show and Keian, of course, sat in amazement.

Except for being quite tired after the game, Keian was feeling pretty good yesterday. I do have to say that I am getting quite concerned with the bloody noses. He has had a total of 3 this last week alone - he has never had this in his life. They don't seem overly concerned, unless it is bleeding profusely. Apparently, it is quite common while on chemo. We go for a blood test tomorrow to make sure his numbers are holding steady enough for his next round of chemo on Tuesday - if not, we will need to go in for more transfusions before they start administering the new drugs. I'm thinking his platelets may be low, as he has also been slowly bleeding from his bone marrow biopsy site since Wednesday. I am so thankful for all the people that regularly give blood, as Keian has needed numerous transfusions and will likely require more during the duration of his treatment. This is something I have decided I will now do on a regular basis.

The ride home was filled with Scottish cats and Jewish crows. They were coming at me from all angles. Keian was laughing uncontrollably! It warms every inch of me to see him having so much fun. Of course, it made the night even better when he was able to sit beside one of his favourite girls!

Onto another great day for my little superhero...


10 August 2012

Super Keian and Kaptain Lasers to the rescue!!!

At this time, exactly one month ago, we were sitting in a hospital room with our boy after being told the worst news a parent could ever hear - your child is very sick. Well, today the Doctor called us with the outcome of his MRD - it's official...Keian is in REMISSION!!!

The Leukemia count when he was diagnosed was 80% and he is now sitting at .27% - I can't even begin to express how we're feeling after hearing this news!

Tuesday we start the protocol for his consolidation phase, followed by the interim maintenance phase, where he will start on his HD MTX (high dose methotrexate). During this time, we'll be admitted to hospital after every dose of this he receives - it will be 4 in total. The drug is very potent, and therefore requires observation until it leaves his system. They're estimating 3-4 day stays every couple of weeks and during this time, they will administer a "rescue" drug called, Methotrexate Leucovorin Rescue. After this interim maintenance is complete, we move onto the delayed intensification phase, which is where he will receive his 8 doses of cranial radiation.

Every bit of this scares me to death. I find myself waking up at night just to hear him breathe. When he complains that something is hurting, or that he has a head ache, I cringe. This is, by far, the hardest thing I have ever endured - the thing is, that I am not even the one that is going through it directly. I can't even explain it really...it's surreal. I can admit that there have been times through this last month that I have been in denial. First, it was the diagnosis. Then it was when he got his first chemo dose, then it was about him losing his hair. The last weekend before we decided to throw him a head shaving party is when we started to notice his hair thinning. I guess I didn't expect it to happen that way. It wasn't until these last couple days that I can physically see the hairs coming out. He finds it hilarious when I tell him that even though he is going to lose his hair, it will come back and that one day, his Daddy won't be so lucky!:)

Today was a GOOD day! Not only because we got great news, but because he was being crazy goofy and giggling for most of it. He's still really weak and sore, but the fact that he can still laugh when he's feeling down is amazing. That right there tells you what kind of boy he is. He is full of life, even when his life is in the process of a battle. THIS is how he lives his life - full of love and light. His life is the most incredible thing that I have and will ever be part of.

Before bed tonight, he asked if he could feed Joren. Feed him?! He has asked to hold him numerous times, but this was the first time he had asked for that. He did amazing! His little brother adores him - his eyes light up whenever he comes around. I can't say I blame him.


9 August 2012

"A poke, a band-aid and a sticker. That's it!"

Yesterday marked an important date - the end of the first phase of Chemotherapy for Keian. He had a Lumbar Puncture to introduce the Intrathecal Methotrexate (a chemo drug that is injected directly into his spinal fluid to kill Leukemia cells in his CNS), and a Bone Marrow Biopsy. His last BMX (Bone Marrow Biopsy) was 2 weeks ago, and at that time, he was sitting at 4% Leukemia cells. 5-10 years ago, they didn't have the sophisticated testing they do now to determine the small amounts of cells left. We are awaiting results from his MRD (Minimal Residual Disease), where they basically examine the cells to determine, at the molecular level, how much of the Leukemia remains. If he tests positive for MRD, he is considered high risk for the Leukemia returning once he hits remission. They're hoping for the results this weekend and once they do have them, we will start the next phase on Tuesday or Wednesday. We'll be at Children's Hospital 4-5 consecutive days, every week, over the next 4 weeks. It'll become like our 2nd home. I'm so grateful that when he was admitted to the Oncology ward when he was diagnosed last month, that the nurses and Doctors were so top notch and made him feel very comfortable...as comfortable as you can with being poked and examined and put through everything he has been. We'll have to make some banana bread this weekend, as he tells me that he'd like to bring some to his Doctor - that's my sweet boy, right there :)

On Tuesday we will start phase 2, which is called consolidation. My little boy will be pumped with an additional 6 Chemo drugs, on top of the 15 that have entered his system since July 10th. Amongst the numerous serious side effects that this new batch can bring, he will very likely have nausea/vomiting and a loss of appetite. While I'm on the appetite trail...I can't believe how much one little person can fit in their belly! He is ALWAYS hungry, thanks to the Prednisone. I think of it this way...pump him full of good, healthy foods. Right now, we're pretty much giving him as much as he asks for, as we know that next week, once the Prednisone has left his body, he won't be asking for anything.

This next couple weekends will be busy - we're taking Keian to see the Vancouver Canadians (he has discovered his love for baseball this year) this Saturday and next, and following the game there will be a fireworks show. He is going to LOVE it! I'm waiting for the day, which I'm sure is very soon to come, where he starts asking for more major league team baseball hats - he has pointed at Mariners gear in the past. Next Sunday will be a Daddy and Son day, which is what they call a "Man-date". Back in June, Ryan won a small prize pack, which included tickets to see a BC Lions game.

Keian still remains the sweetest, most heart-warming little boy. He is always expressing his love to Daddy and I. He ADORES his little brother and I know the feeling is mutual - Joren is now 9 weeks old and is freely flashing smiles. He watches every move that Keian makes. He usually won't leave the room without going over to Joren to give him a kiss on the forehead to tell him how much he loves him.

I can't even begin to describe or thank all the people that have helped us through this so far. From the second we were admitted to the hospital, until this day, I am constantly reminded of how many love Keian. His strength and determination to remain strong and fight along side with Kaptain Lasers can be seen by so many. Keian is our special boy and through all of this, he still remains goofy enough to make us laugh every day! ~Chantal

7 August 2012

Power Up, Super Keian

One of the hardest parts that I've seen during Keian's battle is his lack of energy. It wasn't that long ago when we would have to tell him to sit down while he was playing Wii - he would constantly jump up and down in excitement. Lately, he's resorted to lying on the couch, curled up in a ball. His gaming skills never diminished, just the excitement in his body language and eyes.

Once, there was a time where getting him down to nap or to bed was almost futile. Now he actually asks to go lay down. Part of me loves to finally be the victor in the timeless bedtime battle, but a bigger part of me hates to see Keian so withdrawn from doing what he loves to do.

Over the past few days, I've seen more and more of the usually goofy son of mine that I know. Though not at 100%, I enjoyed play wrestling with him yesterday and hearing him giggle (which is enough to brighten up anyone's day). While not as quickly, he tried to run as I chased him around the kitchen island. He hasn't napped in a couple of days and his complexion is no longer the sickly pale that it was (or like mine always is).

I understand that there will be ups and downs during this battle, but this shows me that he is fighting and he will always be the Keian that everyone loves - especially his dad.


5 August 2012

First steps...

This last 4 weeks have been a whirlwind.  So far, Keian has been handling everything better than I could have hoped for.  I find it amazing how someone so small, can be our biggest inspiration! 

We've been home from the hospital for 2 weeks now-it's been an adjustment.  Since we need to watch Keian closely for certain effects, we opted to move our bed into Keian's bedroom-so, we now sleep as a family of 4.  I actually don't mind it, it gives us peace of mind and I admit that I adore waking up to my little boy smiling and waving at me from across the room<3  So far, our nights have been somewhat event free, which means we are all getting a good nights rest-even Joren seems to be allowing us to sleep a bit.

Keian gets his medicine twice a day from us at home-admittedly I am NOT a nurse and was so nervous the first time I had to give them to him.  I know that these medicines are getting rid of the "sick blood".  He goes to the Oncology clinic every Wednesday to get his IV Chemo and his Lumbar Punctures/Bone Marrow Biopsies (which tell what his blasts are in his bone marrow and CNS).  I thank god that they inserted a VAD into his chest (a port that is inserted under the skin in order to deliver the medicine-then he doesn't need constant painful pokes in the arm) The day he was diagnosed, his numbers were very high.  80% of his blood and marrow contained Leukemia cells.  As of last Wednesday, that number has significantly decreased down to 4%-he is now considered a rapid early responder, which means the chemo is working!  His blood work is holding stable, so far.  He has required quite a few transfusions since admission to the hospital, but so far since being home, he has been stable enough to hold his own.  Super Keian and Kaptain Lasers sure make a good team...

He's been complaining a lot about a sore tummy and bones in his legs-all of which seem to be side effects from the drugs.  He's extremely tired, so we have a lot of movies in bed and cuddles - I don't mind that at all.  He picked out a pretty cool wagon with an umbrella over it for days that he wants fresh air, but is too tired.

Having a nap with Joren

We met with the Radiation Oncologist on Thursday, but until they have the definitive results after his next BMX (Bone Marrow Biopsy), they won't know when they will start the radiation, nor will they know the exact plan - they say in a couple weeks we will have more answers.

Last weekend, we started to notice some thinning in his hair, so we arranged a Shaving Party for him. He had an incredible time getting his head shaved with a few other brave guys:) Afterwards, he had his big surprise-Grandma and Grandpa got him an ATV---he is in LOVE with it. Helps to brighten his bad days!

The BEST smile EVER

Devan,Daddy, Grandpa, Allan and our brave boy
sporting their new "hair"

This last 3 days have been really good days for him.  No nausea, good spirits and happy smiles.  I know all days won't be like this, but the more good days he has, the more strength he will build for the days he needs it.  Due to the steroids, his appetite has increased dramatically and he has the cutest puffy chipmunk cheeks.  Those side effects should diminish shortly after discontinuing them.

He is an amazing little boy and we are the luckiest parents in the world to have him as our son.  We will never give up and we will never stop making the best out of every day.  Some day soon, we WILL be saying bye-bye to Cancer.


4 August 2012

Keian's Story

On July 9, 2012, Keian's journey took on a much different path than we would have expected.  The month prior to this, he had multiple infections and frequent bouts of vomiting.  We decided enough was enough and took him in to see the Doctor on Saturday July 7th.  The Doctor informed us that he had a throat infection and prescribed another round of antibiotics.  We also noted that he had numerous bruises on his legs and hips.  We left the office that night with a prescription and a requisition to get a blood test.  As Keian has never had a blood test before, he was a little scared and wanted both of us to be there with him.  Monday night after Ryan came home from work, we headed over to the lab.  Keian wasn't happy, but he understood why it was being done.  We returned home that night expecting things to continue as they always had.  Keian was just being tucked into bed when our phone rang - this phone call changed our life forever.  Our family Doctor called to inform us that the results had come in and that there were some abnormalities in his bone marrow.   He needed us to go to Children's Hospital, right away.  Dare I even try to explain our thoughts when we got that call?  Even with all the panic that circled us at that very moment, nothing could prepare us for what was put upon us over the next couple of hours.  As Ryan drove, I sat in the back seat, cried and held him while he slept.  Despite the numerous other families in the waiting area, we were in an exam room within 30 minutes - Keian's Doctor had called ahead.  Though they were unsure, they were speculating.   Leukemia...  I don't think either of us were ready to accept this until they did know for sure, but it wasn't long after that there was an Oncologist standing before us.  An Oncologist?!  A Doctor that specializes in Cancer?!  Their speculation became our reality. 

Keian has T-Cell Acute Lymphoblastic Leukemia.  T-Cells are the type of lymphocytes that fight viruses.  The cells that eventually turn into T-Cells lost the ability to mature properly and caused an uncontrolled replication of immature white blood cells.  They did a Lumbar Puncture (LP) and  Bone Marrow Biopsy (BMX) to look at the spinal fluid, as Leukemia cells like to hide out and spread.  It was also discovered that Keian had a mediastinal mass covering his chest and throat and had enlarged lymph nodes, liver and pancreas.  He will need 6-8 months of intensive Chemotherapy, followed by an additional 2.5 years.  The first stage of Chemotherapy is called 'Induction'-the aim is to kill all Leukemia cells.  During 'Induction', and all proceeding stages, he will be on numerous drugs, all of which can have serious side effects.  He will also require Cranial radiation, in order to irradiate the cells from his Central Nervous System (CNS).  Because Chemo affects the rapidly dividing cells, it also kills healthy rapid dividing cells such as; hair, cells lining the mouth and stomach.  It will affect his white blood cells (that fight infection), platelets (that help clot blood) and his haemoglobin (that carries oxygen throughout his body).

During our hospital stay, we explained to Keian exactly what was happening.  We struggled with the decision to tell him for a short while, but then decided that Keian needed to know and understand what would be happening to him.  We told him that he had something called Leukemia and that it meant that his blood was sick.  All the medicines that the Nurses were bringing for him to take were to help to get rid of the sick blood.  Almost immediately, Keian made reference to a superhero living inside his body.  This particular superhero has a laser and was flying around his body shooting the sick blood and uses the medicines to gain strength to fight.  He has now named his superhero "Kaptain Lasers".

When we find ourselves asking "Why?", we take one look at him, with his shining eyes looking back at us, and we realize that we need to be HIS strength.

A beautiful, loving, energetic boy, was given a lifetime of fight.  A fight in which we will be there every step of the way.  When he is too tired to fight, we will fight for him.  This begins Keian's Journey. 

"Don't worry, I got you"