Well wouldn’t you know it!

She does best with Nabilone (synthetic cannabis) and not with Gravol.  So here we are with a kid who gravitates to the hippy lifestyle.  Well that’s nice.  🙂 Makes sense actually.  Ruby is such a tree-hugger and is completely against cutting any trees down for the sake of the animals.  (Not to say that just because you like cannabis you are a hippy or visa versa….I’m just going with a stereotype here…for fun)

She’s smiling and laughing at funny stuff on TV and resting while I torment her slightly with Handel’s Messiah.  I was telling her how Christine Bancroft, famous NY Baroque singer and flamenco dancer would lead us in the Mezzo parts for it in this little church in Montreal and it’s one of my favorite Christmas tradition memories.  I think we should do that in the HJ when we get back.  Any takers?  🙂

Saturday morning

Well after a night of vomiting and all of the other, Ruby finally settled in around maybe 3.  She had a hard night.  This morning we were trying to medicate past the nausea.  The soon-to-be-patented strawberry apple juice made on my beloved Hurom juicer was a GO!  She drank almost half a cup!  It was so encouraging.  Ruby nibbled a cracker, she even had a spoonful of Alison’s famous chicken soup.  And then we lost ground again when it all came back up.  So now we adjust the meds again to try and regain ground on the nutrition front.  This is the most delicate battle.  It’s one thing to survive things that sound like banned pesticides: etopocide, cyclophosphamide, vincristine, and a few others that I’ve completely forgotten in the haze that is this day.  It’s entirely another to get your child to eat.  I’m thinking I’m tempted very strongly to explore other avenues.  I’ve advocated for the use of a synthetic drug called Nabilone.  It’s a synthetic cannabis that could increase her appetite and put a lid on her nausea.  They agreed to try it tomorrow morning if we still can’t get her to eat today.  One step before the tummy tubing.  We were told today she also has to have a tube in her leg to deliver white blood cell stimulation.  I’m guessing this is due to her counts getting sketchy.

Maybe we will play Chutes and Ladders later.  Games are important.  Laughter is important.  That’s all we’ve got at this point. That and every second I can look at her, touch her and make light of the heavy for her.   We play David Myles every day.  Ruby dictated an email to him thanking him for writing his songs.  He hasn’t replied but I hope he knows he’s loved by this little 7 year old.  Maybe you guys could emailbomb him and send him some love for having such wonderful music.

The wispy hairs have started to drift down to her soft pink pillow.  I know the time rapidly approaches to me doing my very best Sinead O’Conner impression.   I’m just hoping Ruby doesn’t shave my ear off haha!

Hey there’s someone down the hall (there’s 10 beds in this part of the chemo ward) with a kickass amazing voice.  I grabbed a couple of moms who I was gossiping with in the kitchen and we crowded around the door to room 10 and all sighed.  Oh to sing like THAT.  I said we should put all the kids in one room and have a mom party in the other.  We weren’t sure how not to get all the iv trees tangled up and then we speculated on the regurg factor.  You know the one, alot like dominoes.

Well that’s about all’s I got’s to report this afternoon.  I’m going to watch Meryl Streep rock out in Mama Mia while Ruby dozes.  That or I’ll read some of my Michelle West collection, good distraction, musical sci-fi/fantasy writer.  I’ve given up on knitting.  I leave that to the professionals.  I keep sitting on the needles and dropping stitches in the dark (Ruby is somewhat photosensitive through the treatments).

Hey for those of you who feel so inclined, can someone go and take some photos of Precious and maybe a video, the one we had didn’t work so she’s missing her kitty alot.

Thank you and well, till the next time I can update.

Hugs (with masks and gloves on)

Hey I wanted to share with you some of the links I find as I go.  I could link you to the medical stuff but I think you can googlesearch your head off on pineoblastoma on your own.  I’m looking for human connections.

Here’s one

http://themourningafternatasha.wordpress.com/cancer-etiquette-dealing-with-blundering-well-wishers/

http://themourningafternatasha.wordpress.com

Her journey is very close to ours.   I connected with her on email and her posts on the subject are informative and well written.

Thanks all

The Anniversary Poem

Ok, so remember how I don’t ever remember my anniversary?

Well this time I did, of course at the insistence of my mother.  For whom, I am eternally grateful.

Brian said I should put this up here.  It’s not the world’s best poem but it’s one I wrote celebrating how Brian is an underwater crab and I’m a firey hot lady horse…or centaur.  or whatever those are.

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How I love thee
Indefinable underwater currents you see;
Elude me.
And you have them in your hand
Like Neptune.
How I love thee.

And our meetings by the line
Where the sand meets the sea
Where your waves pull me out
And push me in
Is Beloved.
Is Bemoaned. 

 How I love thee.
And our meetings by the line
Where the sea meets the sun,
The red of my heart reflected in your depths
And from the shore I can see you
Swallow me every night.
But the evidence proves otherwise. 

How I love thee.

And you race around the house, wolf-wind
Howling your raging currents
Threatening to engulf what you cannot possess
Intrigues me.
As the steam rises from my fiery feathers
A dance like no other.
How I love thee.

Thank you

For what it’s worth, Friday the 13th is a really good out of the ordinary lucky day for me as a rule.

You see, last night I was up late doing the 2 hour pee countdown for Ruby and I read all the amazing things that these small town wonderfolks were doing to help us to stay together as a family in the big ole Couve.  That made me cry.  I mean good tears but wow.  I had no idea and I just am so amazed.  I tell ya, small towns rock.  Especially ours.  Haines Junction, Yukon Territory: listen up!  You are made of the best stuff.  Incredible.

Today there were lots of ups and downs.  Firstly we were asked if we’d like to try an experimental treatment which would reduce (but not eliminate) the risk of deafness from the Cisplatin running today.  I yelled “GREEN LIGHT GREEN LIGHT” and then we called Brian to make sure we were on the same page here.  Of course he agreed, we both have the same vision here…long term quality of life.  That’s what counts most in an effort to be inside that 30 some percent 5 year survival rate in the first place.  (Whatever the hell that means when it’s at home anyway).  Well wouldn’t you know it, the drug had been recalled by the factory pending another recall of a different drug.  This SUPERSTAR oncologist pulled in every favor he could and noone had any in North America or South/Central, he tried everywhere.  His next attempt would be in Europe. But that would not arrive in time to save Ruby’s hearing this go round.

So.  We all felt the air go out a bit.

So I went downstairs to peruse the booklady’s lovely wares, found a book and had a chat with this great lady and she slipped another book in my bag.  What a LOVE!  Well you have to know something about me.  I used to cry even mentioning what was going on in shops or about 10 minutes into a conversation with a doctor.  I could still think, communicate and comprehend, I just did it through a hanky.  Well, now I have a handle on it but when someone does something so kind as to slip an expensive book in my bag and say “This is for Ruby from me.”  Well.  That does me in and I’m embarrassingly teary again.  Thank you Patricia Stewart of Barefoot books.

Then…about 2 hours ago, a nurse rushes in,  the pharmacist called up to say he’d tracked some down miraculously and whoot!  She says, “And isn’t that amazing, Friday the 13th and we are STILL lucky.”  We are back on board for the potentially (keeping in mind all of this is a crapshoot) saving a good portion of Ruby’s hearing.  This means she will awaken to the sounds of her mom nagging her endlessly.  Joy.

I watch her resting and I think I should have taken a picture when the physio dropped off an exercise bike and she peddled for about 5 minutes.  Then I realized that the tension didn’t work and she was just goofing around but having a good laugh.  She said she was riding down the hill from the lookout to the bridge and then to the library.  Then Ruby asked if we returned those books yet.  Ohhhh boy.  Well, let’s just say that we’ll be funding the Haines Junction Library with some overdue donations.

Lots of love you wonderful people you.  That’s all that really matters in this world.  It’s love, pure and simple.  And dark rum soaked fruit cake.  Eaten by yourself on a hospital bed while making snowflakes.

And because I always do, here’s another little pic of Ruby.

Oh right and before I forget, the next pic you see of me and her will probably be in a few days when she starts to lose her hair and she gets to shave my head.  HA!  Now that will be hilarious.

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Accepting the treatment

Well I had a wonderful visit last night from one of our earthbound angels.  A man named Tom.

He came over and talked me through how to just accept the treatment.  He showed me how to look at the medicine as healing medicine and finding a way into it that will help me guide it to where it needs to do it’s work.  I have had some trouble seeing this  as a good healing thing.  The drug descriptions, the side effects both long term and short are daunting.  I have to trust that Ruby’s body will take the treatment and will come out ok.  (I should say that I’m the mum just in case I didn’t make that clear.)  Also to heal Ruby, I don’t need to give her my energy.  I just need to trust her.   So there you have my daily learning in a nutshell.  I’ve got lots to learn here and most of it is about acceptance, love and just trusting the process.  The outcome is in no way in my hands.

When our pal Alison came over today for her visit, Ruby kicked me out of the room and they played out some anxiety Ruby had about things.  It’s such a gift to have someone like Ali here who cooks wicked soups and plays the same game over and over for hours with Ruby and never gets bored.  She’s Ruby’s play therapist right now.  What a funny turnaround.  A wee bit of history there is Ali and I used to be really close, she’s the one that I can crack up with my crazytalk and visaversa.  Then move after move and life change after life change and we lost track.  When we arrived on the medivac and got to the hospital, there she was!  A mutual friend – a dear one had called her and she didn’t hesitate.  There she was, waiting in the hallway for us to arrive.  So magical Ali is back in our lives and I feel so so so lucky. I just love the crap out of that chick.

Meanwhile back on food planet, Ruby had a whole 3 corn puffs (the healthy kind) and three sips of water and she negotiated me down to 7 big gulps of the juice I made her from my new Hurom juicer.  I snuck a carrot into it and she didn’t even notice.  Tomorrow I’ll make it with some avocado but LOTS of strawberries, maybe she won’t notice.  I LOVE this juicer.   The only other thing she will occasionally eat is Ali’s chicken soup.  So hopefully I can get some of that into her tonight.  She’s a complete night owl (well tonight and for the next two we are up peeing every 2 hours) so maybe I can sneak some in.  Fortunately she didn’t like the tomato cream soup so I got to eat that for supper.  It was amazing.

I also cleaned the parent fridge of really scary food that had been in there up to a year ago. Yoiks.  Man I remember when Hospitals used to be really really clean.  Not so much any more.

Today is our wedding anniversary.  I didn’t even remember (well that’s nothing new actually) until my mom reminded me (which is actually what happens every year).  Fortunately I’d prepared the last time we were in the hospital and I wrote a poem.  If Brian feels ok with it I’ll post it here.  It’s my tribute to the fire/water thing we have going on.  Wait.  Firewater.  Hmm…that sounds good.  Speaking of good, someone dropped off some salted caramel sorbet.  What the hell, where has this BEEN all my life??  Amazing stuff.   Well it’s time to harass the kid to eat something.   Gently of course.  And possibly with a good joke.

Her favorite is the one she made up for Matthew out east yesterday.

What does 9 like to drink?

Wine.

Here’s a little pic from the summer:

Rotary Beach 2

 

Chemo – the big heavy

So today is the start of the 4 days of the heavy chemo.  It’s the most intense they can give a kid without…well once you hear about these chemicals, I suppose you can work that out. 

The first is Etoposide for Dec 11, 12, 13th with the next one which is Cyclophosphamide for the 11th and 12th and then the grand finale of Cisplatin ( a wonderfully horrible heavy metal).  

So I focus my energy today to protect her healthy cells.  I bathe her in calming light and play her David Myles songs to find some happy spots in her heart.  She’s a bit low in spirit today.  Fortunately a visit with a frenetic, freaky dietitian motivated her to eat a bit today.  She didn’t like the lady’s energy so she said “mom, we’ll do it our way instead” and actually ate something for the first time in days.  Right now we are singing to “Maureen”.  Good song.  

I have to say one sadness I do project a bit into the future is that this little musical kid who sings in tune and harmonies without realizing she does it, dances like crazy and loves to write songs on the piano…well…her chances of going deaf from the drugs is pretty high.  So I keep telling her stories about Beethoven and how he kept writing amazing music well after he went completely deaf.  

I’m going to put a wee pic here from the wedding this summer – thanks Allyn 🙂Image

 

2 Days of Snoozing

Well today and yesterday were two days of snoozing and dozing and rest.  No food.  No drink.  I’m learning when to push and when to “back the heck off mama!”.

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We have good days like this one where we unwrapped this amazing mobile made by all the students and staff of St. Elias School.  It’s so overwhelmingly lovely that it has become the talk of the ward and beyond.  We’ve had folks stopping by just to have a look at it.  What a wonderful gift, thanks to Marty Ritchie for initiating this and putting it all together and to all the kids and staff for keeping Ruby in your mind and hearts.  Ruby loves it!

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Ruby at the Aquarium

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Little Ruby has a visit with one of the Beluga Whales at the Vancouver Aquarium.  This particular whale came in for a really close look at her a couple of times.  We went on the 5th of December. What a wonderful moment!

Fortunately we didn’t have to fish Holling out of the Otter tank because “they are too smelly”.

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We had a wee Christmas morning where we got to exchange a few little tidbits we found in a Thrift Store, this belt for example is what Ruby found for me at the Sally Ann and it’s a total hippy belt complete with images of peace symbols, hands making peace signs, hearts and of course, mushrooms.

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The day before we were readmitted we took them to the Firefighter Burn Fund’s Christmas Train.  What a laugh riot!  Ruby loved it and Holling kept standing up on his seat yelling “There’s so much to SEEE!!!”

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And of course, Ruby danced her way under the lighted arch and grooved up a storm to the music.

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