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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