minus nine.

Just a quick update, a lot has been happening these past few days.  I am tired and Monday was only day minus nine.  As far as transplants go the days before the actual transplant are called the conditioning phase and they are counted backwards leading to zero (zero being the actual transplant date).  I'm really hoping this post doesn't turn into a lesson in transplant 101 (especially given my lack of knowledge on the subject).

During the conditioning phase many drugs are given to prepare the body.  Some of which are prophylactic (the just in case this happens we'll give this ahead of time) drugs. Others are the Chemotherapy drugs (the nurse has to double up her gloves and wear a plastic suit while handling type of drugs).  Kinda makes you wanna vomit thinking that she has to double glove and pretty much wear a hazmat suit while she pumps them into your tiny toddler. Monday was the test dose of the first Chemo drug.  Kiah was miserable all day and had a bit of a fever.

Yesterday he had an elevated temperature but no fever.  The Ativan was making him loopy and his emotional stability was that of a thirteen year old girl but today was much better. He seemed much more himself, playing basketball and keeping us busy.  Due to the initial fever and a few other questionable symptoms he has had they decided to give him a break for a couple days while they run cultures to rule out anything else going on.  If all comes back negative we will continue with day minus eight tomorrow.  Leave it to my boy to get sick right before transplant, as if negative days aren't daunting enough…  Here's hoping for minus eight tomorrow.


having not taken any photos of the tween my toddler turned into… thought I'd post a couple pics from just before we left… ;)

mis much.

all about daddy.

my daddy’s name is: "keon"

my daddy is "teeny tiny two… same kiah"

his favourite colour is: "blue"

my daddy’s job is: *silence

my daddy's favourite song is: "abc's same kiah"

the best thing my daddy cooks is: "popcorn and pizza and bananas"

my daddy looks like: "daddy hair cut and ears and beard" 

i like to "shoot it basketball" with my daddy

my daddy always says: "hi buddy… hi daddy"

my daddy loves me: "mis much"

…and that about sums it all up.  Daddy definitely wishes he were younger, his job is really hard to explain, he often adds weird ingredients to his cooking, his 5 o'clock shadow can sometimes be mistaken for a beard, and he loves Kiah "mis much".  

Happy Father's Day to my amazing husband and the greatest Daddy our sweet boy could ever dream of.  For all of the ways big and small that you take care of our little family, I thank you.  We are so grateful that you belong to us.  <3

kiah's drawing of his daddy… 

he wanted to give his daddy an owl for father's day… (???)

daddy's basketball game and proof daddy isn't the grasshopper kiah drew him to be… 

in between.

On the days in between I wait.  I wait for things to feel normal, for life to begin again.  

Redirecting myself once again to the infectious giggles of a toddler and laughing until my cheeks ache…  We sing silly songs loudly, and read our favourite books on repeat.  We eat pretend meals and dance to any commercial that plays a tune.  We cover ourselves in stickers and take turns shooting anything that resembles a ball into anything that resembles a net. We talk wildly with our hands and hide in plain sight.  We push every button that we pass twice and randomly list the events of our day (using "and" excessively).  We scare each other from around corners and name an objects colour using corresponding sesame street characters.  We drink water with ice to the top and watch our limbs as we run (okay maybe that ones just him).  We hug in big squeezes and love in abundance.

Truthfully I often hold back tears as I get caught up in these moments, our moments.  And though my cheeks are drenched in those tears they also ache in laughter.  

On the days in between I wait, and while I wait I soak up all the sweetness.


sweetness at the zoo...

on repeat.

The very first day, thirteen hours after his birth as I first laid eyes on him I cried. I cried trying to imagine how this tiny boy would overcome all that was ahead. I had no idea the journey we'd be on or where it would lead us almost three years later. But in the days, weeks and months following that first moment I learnt this sweet soul is a fighter. 


We arrived here in Calgary yesterday.  Today marked an official first step to the transplant process.  Kiah went to the operating room around 1:45 where a Bone Marrow Harvest was performed.  They removed some of Kiah's own stem cells as a precaution.  In the event that the transplant is unsuccessful his own stem cells can be returned to his body.  The whole procedure took about an hour and he spent another hour in recovery.  When we were called in to see him he was screaming, tears flooding his cheeks.  Scared and confused he nuzzled in and cuddled me close.  I watched his sweet face just as I had done on that very first day. Remembering how I felt in those moments, scared of what was to come.  

Truthfully today was much the same, still there are so many unanswered questions and the future is unclear.  But behind all that uncertainty there is wonderment and awe of who he is. What I do know for sure is that just as he has proven from the very second of his birth our boy is a fighter.  


Ps. That little fighter spent the whole evening running circles around this Momma and Gramma too.

the very first seconds...

sunshine.

I've been spending this past week and a half distracting myself from the reality of my life. Waiting for answers that will determine the fate of his life, our lives.  I've avoided posting like I've avoided all my feelings, all my what ifs, and all my fears.  

Instead I soaked up every ounce of sunshine my boy has to offer (and he sure throws it around).  There were Barbecues to be enjoyed, parades to be seen, water fights to be had, basketball games to be cheered on, life to be lived.  And we've been living it!  In the middle of all our distractions we received a phone call from Calgary and a decision has been made to go ahead with Kiah's Stem Cell Transplant.  Truth be told Keon phoned so many times they had no choice but to return the call (he was definitely not subscribing to my avoid and distract regimen this week).  Regardless we got the call and are relieved that this chance has not been taken from us… from Kiah.  

Our boy deserves the world.