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.

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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.