Ya ya ya

I know.  I am the girl who has about 25 diaries in a box under the house that I should just burn because each of them are about 3 pages long and then I forget to write in one again.  I get writer’s block.  Well now I have communication block.  Full stop.  I find I can have a conversation that lasts about 20 minutes – nothing intense mind you, just general whinging, – and then I’m out.  I might as well be unconscious.  So me not writing….don’t take it personally.  I’m just completely brainless at the moment.  Could have something to do with being hit in the head with a paint can but I’m just betting on stress.

So the first and most important thing on this list is the scan.  It came back the same as the last which is clear of any tumor sites in Ruby’s brain or spine.  Oh Joy!  I didn’t realize that we were all sniping at each other (3. To make malicious, underhand remarks or attacks.) for a week before Ruby and I flew south for the scan.  I’m sure you can imagine, I read many parent’s blogs about kids with illnesses …the lead up to a test is hardly bearable. 

By the way I was told this wasn’t at all that meaning, that it was in fact the bird that flew up and almost landed on Charlie today when we went fishing.   Snipe or snipes a. Any of various long-billed shore birds of the genus Gallinago or Capella, related to the woodcocks and sandpipers, especially the common, widely distributed species G. gallinago or C. gallinago.

Clear clear clear of tumour sites.  We are overjoyed and yet….it’s a calm thing.  The funniest part of that day was when we went to our second home in Van with Alison and Darren, Ruby was more excited to tell them she had no cavities from her visit to her Edmonton dentist than the scan results.  I think she knew it would be ok and so, it got her a couple new dolphin stuffies (we will be building a new house to house all these creatures).   Hmm.  I just thought of something funny.  You can run through our house and always have a soft place to fall.  That one is for Ursula who can come to our house any ole time and fall on the stuffies. 

Today we took the kids fishing.  Most people think that’s for an hour. HA!  Our kids are tough or at least only get bored until we catch fish.  So we had them out on the boat from 12 – 8 today.  YA!  But, well there was a small tragedy.  While Ruby received a new fishing rod to replace her new one that broke on the last trip (oops mom), Holling was given the Barbie rod by his big sister.  It was a rite of passage for sure.   So imagine if you will a very excited 4 year old.  A very bored 8 year old.  A mom who is only focused on fishing for a fish dinner and a dad who is trying to control a wild terrier and a motor.  Throw into this mix the moment Holling loses his grip and the pink super-rod sinks to the bottom of the lake.  Slowly and with an emphasis on immediate and rampant sobbing on the parts of both little ones.  Holling sobbing “I’m so so so sorry Ruby, I feel horrible, I’m so so so very sorry”, Ruby sobbing “I will never see the Barbie rod again!  Why didn’t you take pictures of it before Mom!  We don’t even have a picture of it and I’ll never see it AGAIN, this is Horrible, I don’t want a new one I don’t want anythingIwanttogetoffthisboatandnevercometothislakeagainihatefishingIamsosoverysadIdon’twantanewonewhydoeseverythinghavetochange.”

Ah, there’s the crux of it, isn’t it.  

Why does everything have to change.  

I say that as a statement because it was more a statement than a question.  We had a good long talk and we talked about growing up and riding horses, how that is a change and a good one, and how all things change all the time, seasons, time, weather, little brothers, big sisters, life in all forms.  

But she is saying how we all feel.  Why.  Why does everything have to change.  

And then just as we were winding up to catch a third jackfish, I dropped the fishing net into the water and down it went.  Along with any further catches.  There was no way we could reasonably boat a fish off a line with Charlie and two kids in a little inflatable.  We packed it in and took a “go faster Daddy” boat ride back to the launch, loaded up our 20 lbs of rocks, driftwood and fish and atv’d down the road to the truck.  We saw a “buffalorabbit” and possibly a “buffalosquirrel” but we weren’t convinced it had horns. 

Home we are.  Home.  With the mountains at our right side and the valley at our left, facing towards the sun that apparently never sets.  (I discovered tonight surfing what time Holling will get up) 

Aug. 05, 2014 Rise Set
Actual Time 5:56 AM PDT 10:34 PM PDT
Civil Twilight 4:55 AM PDT 11:33 PM PDT
Nautical Twilight 2:50 AM PDT 1:30 AM PDT
Astronomical Twilight Sun does not rise Sun does not rise

http://www.wunderground.com/weather-forecast/Yukon_Territory/Haines_Junction.html?

Wow huh.  Sun does not rise, sun does not rise.  And yet there it is, every day.  Now THERE is a temporary constant that Ruby can hang on to.  Ok, time for sleep, I’m addled and confused.  Look at me.  I’m saying it never sets but in reality it never rises.  Cat in box, cat out of box.  

Much love,

Ruby’s mom. 

The travelling, oh the travelling

I must give a huge shout out to Air North who keep helping us out in one way or another.  If it’s allowing us that little extra bag or getting a wheelchair for Ruby when she’s feeling super tired out, they are on it and more.  I love you Air North.  As much as we can, we always travel with them.  

Well, back from Edmonton, it’s here there and everywhere for us.  We all have colds, sore throats and headaches.  Ick.  Icky sticky cold.  Holling blows his nose on my shirt in the airport, Ruby is running around like crazy getting upset with us for telling her to slow down before she……whoops, wipes out again.  I think the one big challenge for a kid with brain surgery and cancer like this is that it changes their perceptions of their abilities post treatment.  Ruby is very very frustrated with constantly being told to slow down and be careful and watch out and slow downslowdownslowdownslowdown.  I don’t blame her, if I was my own mom, I’d need earplugs.  I’m very annoying.  

We saw Dr. Trethart in Edmonton and had lots of testing down to assess her heavy metal load and other things.  She was very brave and just did what was needed though every blood test etc comes with a load of instant terror and trauma.  It’s challenging to not just pick her up and say “ok, no more bloodwork, this kid has been through enough!”.  

The changes we’ve noticed with Ruby are probably more social than anything else.  Imagine being locked up without kid interaction (except for your hilarious 4 year old brother) and then getting out in the world and being unsure of how to be 8. Both of my kids are good communicators though so we just keep working through it.  I’m a bit “old lady” so I have to find my 8 year old too.  Top of Holling’s list right now is to have friends.  He makes friends wherever we go and then runs up to me to announce it.  I think the focus of the summer is getting him hanging with some wee ones his age, ones that live here.  Ruby is all about the older girls.  She is banking on some serious Wendy and Brenna time.   Her bookworminess has taken over again and I find her hiding in a variety of cosy reading nooks with an Ivy and Bean or some form of fairy book.  I’m super happy that she’s able to read.  That was the one thing she missed the most when her vision went nutty.   

Well, it’s off to make lentil soup and some buns.  Kids are watching BubbleGuppies and taking dance party breaks to Primus.  Yes.  My kids love Primus.  Maybe they will make an awesome rhythm section one day!  Paypaya (better known to Primus fans as Duke Lion) is their fav and they zoom around the house in dresses and wigs.  Heeeelarious.  Ciao bellas and thanks for being patient.  I had to get to a point where talking to anyone or writing stuff didn’t put me in an angry place.  Processing this is a long long road.  Just as Ruby’s journey is a long one.  As much as “they” say her cancer will return placing her in palliative care as a 100% guaranteed situation, I have a sense that this isn’t true.  But it lingers and eats holes in my hope.  So building protection from negativity is tricky.  Being the Indigo that I am, anger has been a great motivator in my life: dashing the expectations; striving beyond opinions; defending the undefended, that’s been my path.  Now I need to be motivated by a sense of rightness not righteousness.  Different fire, same heat.  Yes.  I’m pontificating pre-coffee.  Maybe I’ll go catch up on that and then fold the endless laundry.  Hugs to you all.  Every wish, dream, prayer, positive thought sent into the universe, to your god, to whatever you believe in counts and shifts the energy that surrounds us.  Thank you. 

To the tune of the Wizard of Oz theme song…

I forget sometimes how these are such long distances. 

When I plugged in to this site to see how long it was to HJ from Richmond it said 33 hours. So when Brian texted me to say he was in Pink Mountain I thought….where is that again? It mustn’t be too long to home now right?  Hahahahaha (wild laughter at myself for my sheer lack of long distance driving education – my longest single run drive might have been 10 hours in my life).  http://www.distancesfrom.com/ca/distance-from-Whitehorse-to-Pink-Mountain/DistanceHistory/5044698.aspx?IsHistory=1&GMapHistoryID=5044698    If you see a little blue car with a fox, bunny, owls, dancing mushroom, broccoli and fruit on the side loaded to the hilt, hopefully NOT sparking a trail with the bike carrier along the ground, give a wave and just check to see if the driver is still awake. 

Wow, It’s a long way home.  It really really is. 

I’m madly packing, cleaning, recycling and washing dishes.  Tomorrow is vacuuming, floor washing, last wash for sheets etc and then whammo.  On the plane.  For us it’s mad luggage but once we are in the airport courtesy of the Christensen/McDonnell’s muscle, we should be left to watch the planes for a bit, argue against buying any more toys, sample the airport fare and get on the 2.something hour ride home.  See you soon you beautiful Yukon you.  I can’t say The Yukon Territory apparently so I will settle with MY Yukon. Or Yo Yukon, That Yukon, etc.  I’m no grammar ninja.  Obviously. 

You know, if this was Brian and he was with the kids, he would SOOOO splurge and buy them a little somethin somethin.  Right? Such a softie. 

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a couple more from the last week

For Ruby’s infinity 8 birthday she received…….her central line removed!!!!!!  She was thrilled and scared and so keen to go swimming in a week.  A few more days to go before we can do that.  The last pic is from yesterday on the little False Creek ferry.  Sooooooo cute, they were totally chuffed to be on it.  Even in the pouring rain.

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Homeward Bound

Yesireeeee!

A few more hoops, a few more tests, a few more appointments and visits and we will be back planting our feet on Yukon snow  soil.  We are soooooo eager to get home!  Ruby’s birthday is tomorrow and boy oh boy if it is isn’t gonna be BOWLING!  The other day Holling wanted to go swimming and Ruby was very upset because she couldn’t go in the water with her line in.  Brian suggested bowling so while the boys went swimming, Ruby kicked my butt bowling.  It was completely and utterly fun.  I will post a video so you can all see her little awesomeness rolling the green ball.  So that’s the plan for tomorrow.  She also designed her own birthday cake which is to be made in the morning …made entirely of fruit…layers of thinly sliced and layered different fruits.  I’ll post a pic after the big day tomorrow.  I know she shares this day with a couple of you out there so a happy day to you as well! 

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Waiting for Ellie

Whoohoo!  Ellie and Craig are enroute from Edmonton to pay a visit to a VERY excited Ruby and Holling.  Of course all of us are excited but probably not to the same hyper-frenetic-insanity level that the kids can sustain.  Today the talk has been about going home.  Ruby has had a tough couple of days.  Her pet flea died after 2 days in a container.  I didn’t realize the impact it had on her until uncontrollable weeping took hold of our Thursday evening.  Turns out an almost 8 year old really can communicate clearly her fear of dying.  She doesn’t want to die.  She doesn’t want any more treatment.

We spent the evening hugging and talking about how jam packed the life of a flea is for the short time they hop around biting people and cats.  The talk turned to how much we need to just hug each and every day with a warm loving heart.  How do you tell your kid that the cancer they have has no researched effective treatment?  The doctors expected us to bring her to all these meetings we have been in the last week or so but we don’t feel she needs to hear the banter and double talk with contradictory statements and blatant untruths. We left her and her wild brother in the capable hands and arms of Darren and Ali.  We will fight these battles for her.   She’s made it very clear on a daily tearful basis that it’s time to go home for a while.  That is what we aim for.  Nothing more, nothing less. 

So this is why I’ve not written to you all.  It’s a challenging road to review research paper after research paper, tracing funding of said studies and seeking alternatives.   It’s pretty telling though when the doctor says that for cases such as ours with such poor prognosis and with marginal benefit from the treatment prescribed – leaving treatment and monitoring with MRIs should be approved. 

We await the hospital’s decision on this.  We don’t get much say actually.  There will be meetings with various hospital boards and social workers.  I will more than likely stay quiet now.  I can’t post the nitty gritty but I will give you Ruby updates regardless.  I hope to put up a picture of Ruby and Ellie tomorrow and the moment Ruby turns 8 and the moment she gets her wig.  Those updates are guaranteed.   I’m so glad she’s reaching infinity.  I wasn’t sure if we would get this far.  We will make sure to do the waggle-dance of the honeybee and we will do our Qi-Gong and see all possibilities.  The best ones.

Release …sort of

Well, back in the hospital again for platelets and kidney function test today.  The loooonnnnnng day starting at 8am and ending at 5pm.  Fortunately Holling-the-hospital-licker didn’t stay here.  Turns out right next to us…playing in the same room, with the same toys….is a little one with Norwalk.  Gah.  The poor staff here told us late this afternoon and apologized for not keeping Ruby in a room.  She still has a seriously  compromised immune system so she can’t be around these lovely viruses.  Then another little one had an mysterious rash and a cough……right behind us.  The doc came in and had a discussion with the mom about the possibility of chicken pox and live vaccine he received a week or two ago (you aren’t supposed to be in the ward with a live vaccine but that didn’t seem to matter) and then I think of the measles outbreak just down the road.  The interesting thing was when the doctor said, “well he’s been vaccinated but once you have chemo it removes that immunity.” http://www.uptodate.com/contents/immunizations-in-patients-with-cancer

I masked Ruby up the moment we got in and had another parent ask why and I just said protective isolation and she snorted and said, “well, they wouldn’t let a kid in here who was sick.”.  I’m kind of glad I’m a paranoid freak.

Our nurse today is super lovely.  Turns out her girl (birthday a few days off Ruby’s) is so similar to Ruby.  Prefers a box of recycling to a fancy prepped box for crafting.  Loves science shows, MLP and LPS.  Forget the colouring books, these girls just like a big pad of paper and some good quality crayons and pencil crayons.  I forgot to ask her if her kid had the same obsession with pipecleaners.  I swear-to-celestia (come on, if you know what MLP is – you’ll get the reference) we have to restock once a month with Ruby.  I’ll get her fairies lined up from our 28 day stint and take a pic.  You’ll love it.   I also saw a book someone self published and dropped off here. It was SO sweet!  It was a story about love and losing your hair and how to be a princess no matter what.  I just love that some mom took it upon herself and just made a book!  Gives me ideas I tell ya.  I’ve got enough illustrations by now.  Ivy and Marigold.   Our fairy friends.  Maybe I’ll just write one this week, take a pic of the drawing and see if you dig it.   Righteo, carry on.  Now that we are out of hospital I might not post as often so don’t worry, nothing terrible is going down, just taking a wee break from whinging.