Superhero Training

Everyone in the household is doing really well right now - lots of energy and happy faces.  So, we thought it would be a good time for some INTENSE superhero training!  You thought these skills came naturally?

We practiced our flying....

Please excuse the messy shirt, some days we are lucky to even get out of our pajamas in this house!

We practiced our superhero muscle pose...

And we also practiced helping people in need....this involved finding everyone of Charlotte's stuffies to give them a much needed hug (a daddy invented game)!

Ready to go conquer the world!

Special thanks to my friend's Aunt Sue for this beautiful superhero cape!

Why I'm going to ride in 2013

warning: read the following blog at your own risk of crying and a bit of heartache.  This is a cancer blog, and the following blog is the reality of the darker side of cancer.  This blog is a journal of my thoughts and activities, which you are privy to the intimate view of.  As much as I am a pretty positive person, and 90% of my entries of rose-coloured, there are the occasional rough days or dark thoughts that need to be explored as well.  Like a feel-good movie, these are the parts that have you bawling before we get to our happy ending.

When I tell people that Charlotte's diagnoses has an 85% cure rate, I usually get a "that's great!".  Really?  I don't think I would be happy with anything less then 100%.  Let me break down that number for you.  There will be roughly 65 kids this year in BC that will get diagnosed with Charlotte's cancer, Acute Lymphoblastic Leukemia - early B cell.  So that's 10, TEN, kids that won't be cured.  At the end of Charlotte's treatment, we will very likely know all 65 families, through seeing them at the hospital or attending various events.  No family should have to lose a child.  No family should have to see their child's body being poisoned in order to help them get better. 

I haven't even touched on Stefan's crappy 0% cure rate - all we can do is just pray every day that his tumour doesn't grow, or even better, just disappear. 

In the simplest of terms - It really sucks.  Cancer SUCKS.

I often think of my favorite short story, The ones who walk away from Omelas.  It's about this utopia town, where the key to the town's happiness is that one child suffers, and everyone knows that their happiness stems from this one child's suffering.  The ones who walk away, are the ones who can't live with it.  It makes me think of cancer - and how it's really everyone's fight.  I'm going to walk away.  (thank you Mr. Stephen Sturgeon for introducing the story to us in my grade 9 english class and really getting us thinking)

I've made the decision to join Team Nothing Butt Class in the 2013 Ride to Conquer Cancer.  Yep - crazy me is going to ride the 200+ km from Vancouver to Seattle in June 2013.   Why?  For those 65 families and all the other families we see in the oncology clinic and at the cancer centre, for my husband and daughter, for my little cuz Jordy, for my grandma and grandpa, for Stefan's brother Eric and Aunt Kirsten, for my friends Zuri, Robin and Mike, and for the countless others out there who have been or will be touched by this horrendous disease.  I pray that in my lifetime we find the cure.  I'm tired of feeling helpless as I watch my little girl through this.  And maybe, just maybe, I can make a difference.  I have a year to raise $2,500 - hopefully I can get a little help on the way.  I feel terrible asking for help when we have been given so much support already.  We have a year - so we plan to do some fundraising on the way.  Please don't feel bad if you are unable to donate, I know so many people have already donated to the various other events we have done!  You can check out my page here:  ride to conquer cancer 2013

.....I guess I need to find a bike?

Ballerina Charlotte

This was just too cute not to share....

If you are wondering what the bump on her chest is - that's her VAD (venous access device), or as Charlotte calls it, her button.  Her IV is directly put into this for chemo and blood transfusions.  The tube runs up to an entry point on her neck which you may have noticed in other photos.  These scars will stick with her - so we are appreciative that they cut just under the breast tissue.  Charlotte now has 2 barbie dolls - upon undressing one of her barbies - she pointed at the breast and said "button" - who says little girls can't relate to barbie?

1.5 year recap...and of course fathers day

Wow - I can't believe how much our world has changed in just 1.5 years.  My sense of time is completely skewed now.  I think back to my Grandpa's 95th birthday, just months before Stefan was diagnosed, and it seems like eons ago.

I think we have a few new readers - so I thought it would be a good time for a recap:

• exactly 18 months ago, December 17, 2010, Stefan was diagnosed with a brain tumour and rushed into emergency surgery.  The 8 by 5 cm tumour was causing his brain stem to shift out of place.  
• We at first thought the tumour was an astrocytoma, it was later diagnosed as an oligiodendroglioma.  The first surgery had only removed a small bit of the tumour and put a 'hole' in his skull to relieve pressure.  
• We had our share of appointments for Superchuck with some developmental delays.  These seem pretty minor now!
• In February of 2011, we met with 2 different surgeons with some very contrasting opinions on a second surgery.  From "if you do another surgery, you will be a vegetable" to "we can remove 70-80% of the tumour with little to no impact".
• On March 8th, Stefan had his second surgery - removing 98% of the tumour!
• Charlotte learned to walk on March 26, 2011 - at 22 months old
• On May 6th, Stefan started his radiation, which ended 1 year ago - June 16th
• We announced our pregnancy and then welcomed the addition of Nathan on October 7, 2011
• We have had two follow up appointments since Stefan completed radiation - each showing no growth.
• We made it to Hawaii to recharge in January 2012
• Our world was rocked again March 8, 2012 with Charlotte's diagnoses.
• We are now three months into Charlotte's chemotherapy treatment.  The treatment will be pretty intense until December, and then she will be in 'maintenance' for two years - which will still mean chemo every day for 2 years, but we will be able to regain a somewhat normal life.
• We have received MOUNTAINS of support from family, friends and even complete strangers - and realized how beautiful people are - even in the midst of a storm.

Whew - yes - I will agree that we have been through more in the last 18 months then one family should have to go through in a lifetime.  But - we are still here, still strong, still a team.

On that note - I have to do a little bragging about my lovely hubby for fathers day.  I usually don't like to brag too much - as I think I have a pretty stellar hubby - and I don't want to be lynched by jealous people!  So - to my amazing hubby - thank you for my magically appearing clean clothes (washing machine - what's that?), your amazing parenting skills (I will have to learn the tooth brushing song one of these days), for contributing more then your fair share of genes to our cute kids (thank goodness they didn't inherit my lopsided ears), and your shoulder to cry on (and what a muscular shoulder it is...mmmm).  I'm so lucky to have you and I could not imagine a different partner through our tough times.   

Somehow, Stefan ended up bbq-ing our dinner tonight, and I'm the one headed off to the spa with my girlfriends tomorrow.  If anyone wants to steal Stefan one night this week for a drink - please take him - he deserves it!

rough day

...not for Charlotte.  Charlotte is doing amazing - lots of energy and eating a ton.  The second half of this phase has not impacted her like the first half.  She is back in tomorrow for chemo - I'm curious if she will need a blood transfusion - based on her energy level - I would guess not.

No - the rough day was for me.  I just got hit by this wall of pain.  Maybe I have just been in a three month state of shock and denial.  But all morning and afternoon I was fighting against the tightening hand on my heart and the lump in my throat.  After both the kids were down for their naps - I curled up into bed and cried.  Stefan came home and found me and held me for a good half hour.  I guess I was a little overdue for the outlet.

Interestingly enough - my girlfriend had just blogged Sunday about the difficulty of her breathing trials.  So today, was a figurative (while minor) comparison - as I felt like I was going to choke before I started my crying session.

Afterwards, I washed away my tears, and faced my two happy smiling children.  Ended the day with a hot bath and I'm now feeling rather drained.  Tomorrow is another day.  That's all we can do - take one day at a time, and hope for more happy ones then rough ones. 

Steak Night

"They claim red meat is bad for you.  But I never saw a sick-looking tiger." - Chi Chi Rodriguez

My Rant

Someone once asked me, shortly after Charlotte was diagnosed, "do you live on a plutonium mine?".  I'll get to the answer in a second.

Here is the thing, if you had asked me my thoughts on cancer a couple years ago, I was ignorant enough to think it would never effect my family.  I was one of those delusional people that thought cancer only effected old people, mean people (pent up anger causes cancer, stress causes cancer) or those people that ate crap.  Boy did I get a wake up call, actually I got two.  Here is the thing people - cancer doesn't discriminate - it will impact EVERYONE in some shape or form.

So - no - we don't live on a plutonium mine.  Stefan had his tumour for 'years' before he was diagnosed - so it was there well before we moved into our new home, and before Charlotte was a thought in our minds.  We don't live under any power lines or have questionable buildings nearby.

The two lightning strikes that have hit our family do not have a known cause, and are not related - we just got lucky so to speak. 

I would say we are a pretty healthy family.  I try to buy mainly organic.  We order our beef and chicken from organic or pasture raised BC farms.  We exercise.  No Johnson & Johnson for my little ones, and Charlotte has never even been to the golden arches.  (don't think too much of that - we still like our fast food - just that occasional Whitespot is our treat of choice).  I was one of the first on the 'no bpa' products band wagon.  I'll take my dandelion covered lawn over a weed killer'd green one.  We don't even have a bloody microwave.  Shall I go on?  I guess our guilty pleasure is our wireless internet - do you think that caused it?  This is my mind - double guessing everything.

I can understand people thinking it may have something to do with our lifestyle or environment for us to get hit twice by cancer within 15 months.  But I just don't think you can use that thought process with kids.  I just don't understand childhood cancer.  These little beings haven't been in the world long enough to get exposed to toxins, etc. - how in the world do they develop cancer?  It boggles my mind.

So - there are three paths I could have chosen after our latest diagnoses:

1. well - we did everything we were supposed to do - and still got hit by cancer - scew it all - let's drink, eat crap and be merry
2. that's it - we are only eating grass and berries from our own back yard, and I'll weave us some clothes from the tree leaves, we are going to live 'off the grid'.
3. ah well - this sucks, lets carry on as usual.

Can you guess which one I took?

back to the bubble

We finally hit the magic number, Charlotte's ANC was 1.4 today - which is good news as we can resume treatment. 

We had a great break out of the bubble.  We all had a fantastic time at the Child Run - and an excellent $4,721 was raised by our small but powerful army!  Thank you to everyone who came out or donated!  Stefan and I really enjoyed seeing all the familiar names on the donor list.  If anyone tuned into the Miracle Weekend telethon on Global, I'm sure you were watching with a different perspective this year.  I teared up a number of times watching it.

It will be hard to go back into the bubble and back to chemo.  The past few days of freedom and a (relatively) healthy little girl were a nice tease.  Each day Charlotte gets better and better - more energy, more smiles, more chattering.  I'm hoping the chemo doesn't bring her down to much during the remainder of this phase.  The second half of this phase, the next 28 days, will be identical to the first half minus the lumbar punctures.  Which is good - no fasting required or general anesthetics.

This weeks schedule:
- full day tomorrow at Children's Hospital
- quick trips into Children's Hospital Thursday, Friday and Saturday
- chemo given at home every night this week
- I'm guessing there may be a visit to Children's Hospital early next week for a possible blood transfusion

Charlotte's Army team members

family shot

just because Mr. Super Smiley Pants doesn't get enough face time...

a weekend pass

Charlotte's ANC level was 0.6, still not at the magic 0.75 number needed to start chemo, so we are once again delayed.  But....the good news is, it was high enough for us to leave the bubble!  I can not tell you how nice it was to leave home as a family!  We have all been pretty giddy for the past two days!  Trust me - try this little experiment at home - lock yourselves up at home for three months, then let loose, I assure you you will be very entertained by your hyper, smiling, happy kids (I'm not just referring to Charlotte and Nathan).

We got permission to go to the Eat Vancouver show, which is Stefan's favorite event of the year - free food, need I say more?  We hit that yesterday.  Today we went to the 'busy' park which we have always had to avoid, and tonight we went OUT for dinner - Whitespot pirate pack for our little girl!  Charlotte has been eating like a superstar the past week - I guess blogging about problems makes them go away - something I will have to try again in the future!

Tomorrow we are very much looking forward to being able to do the Child Run as a family!  Tuesday will be blood work and we should be starting chemo on Wednesday.  I'm not sure when our next weekend pass will be - so we will be packing in a couple more public outings before Wednesday, perhaps you will see us out!

at the 'busy' park

incognito on our way to Whitespot...

Giddy boys

reflecting in her fedora - or "Dora" hat as Charlotte likes to call it