Little Skipper Ruby

Hi Everyone, 

We had the fabulous experience (or rather Ruby and I did) of a conscious MRI scan of her brain.  At first, it was wayyyy too daunting but a little education, a little play and some comparisons to the roller coasters at West Ed and she was game.  

Here’s a quick explanation.  I will have to draw the faces one of these days but for now: a mild smile is the reaaallllly slow baby roller coaster at West Ed.  The smile but not a wild grin is the slightly bigger roller coaster..the one with the dragon in the front – that’s where she got over her fear of them riding right in the front by herself.  We then walked a little way down to the roller coaster before the big big one that she couldn’t ride because she was only 6.  On this one she had to go with a parent so Brian took her and the pic we have of her is the one that we call Level 3 Roller Coaster.  It’s the “big grin, clap both hands, jump up and down, and shout hurray”  which is Ruby’s description of the happiest happy humanly possible.  

All the techs and the radio doc worked hard to get her in the first go and we went back to the change room with Ruby shaking and crying and saying “please put me to sleeeeeeeeep, I’m too terrified!!!”  The fantastic Claire from Child Life (the parent lifesaver line in the hospital – they make the hard stuff easier through play) and her mate Emily came down with an Ipad with the sounds and a binder of pics and stories.  After about an hour of talking and listening, Ruby felt ready.  We went out to the waiting room and chatted some more.  Wouldn’t you know it.  My Little Pony was playing on TV.  This might have been what turned her into Rainbow Dash.  

Finally we were ready.  The techs assumed Ruby was going to have a spaceship experience but she corrected them pretty quickly.  “This is a submarine and we are going deep in the sea to hear the deep sea echolocation.”  So they called her skipper and captain instead.  “Mission control” checked in through the exam but she held so so very still we were done ahead of schedule and she was….disappointed!  What?  I know.  Crazy huh?  They asked her how it went and she shouted (had the headphones on) “I want to do this forever!!  This was SOOOOO 3rd Roller coaster AWESOME!!!”  Fortunately for Ruby this will be forever 🙂  She will need these scans every three months for the next 5-10 years and then once a year till the end of her long long life.  She said “I will even love this when I am as old as Grandma!”.  Way to look ahead Ruby!

I’m sitting here in Ken’s living room marveling at how easily he took us in and keeps accepting the 100 newspapers on the floor of Holling’s bridge.  How he tiptoes around the scattered Lego and how he puts up with the extra strong second pot of coffee.  What a trooper.  We love this guy.  

So here’s the scoop.  

The MRI was clear of disease to the best of their initial reading.  This means we will go in for one more round of chemo.  Ruby said she is totally ok with that.  We were due to go in on Friday but we got a reprieve when there were no beds.  So we are going in on Monday morning.  We start with the boring 6 hour hydration for methyltrexate and then we move on to the Vincristine, Etoposide, Cisplatin, and Cyclophosphamide.  So the big non sleeping run for the first 5 days then it’s the crash for the rest.  We are awaiting our recert Blendtec from the company who makes them.  They are SO awesome and will allow me to just make meals, blend them and then get them in Ruby.  I will keep juicing as well when I’m in there – I don’t get sick when I’m doing that on a regular basis.  We are so grateful for Blendtec’s family medical program.  They are sending this gratis and we will be able to support our little sweet bug though this round.  

So that’s our path for now.  We are at this point.  We are taking this path.  We are not alone, we are so loved and supported by all of you and the healers that heal our spirits and teach us ways through this deep dark wood.  Thank you.  Again, these two words have such power.  Thank you.  And yet when I am the one saying them, it somehow feels that I can’t say them loud enough or strongly enough to make as much of an impact back to you.  Much love, namaste, all of those good goojoos to you. 

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7 thoughts on “Little Skipper Ruby

  1. Hi Yvonne ,
    I’m in a yoga retreat with Tejomaya (Tim) this weekend. Sending all that positive energy to Little Gem and all of her support team. Much love,
    Marguerite

  2. Thank you Higher Power – thank you!!!
    XOXOXOXO
    aweeeee Ruby – I can’t wait to read this to Adelaide And Sarah in the morning 🙂 They will LOVE to hear such good news ! Hugs to all 4 of you 😉 ….. Oh, Keep an eye on the postman (if he’s not already come by) He is carrying a parcel with YOUR name on it 😉 Sweet dreams kiddo sweet dreams xo

  3. Sooo happy Ruby sailed through the M.R.I., I could see it being intimidating. bless you guys through this next stage of treatment.

  4. Tears of happiness! We think of you so much and hold your health and happiness in our thoughts always. Sending love.

  5. Prayers and positive thoughts sent to you from all of us. Yvonne, don’t ever feel that as a mother you shouldn’t question anything you feel you want changed or made clear why they are doing to your special girl. Keep on doing what you are doing.
    Ruby , I think of everyday and you are in my prayers. You are very special to Chirs and as to me. Keep fighting –

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