Ever have a morning you wake

and it’s like everything has shifted a little?  Well this morning Ruby is more happy, more calm and feeling pretty good.  Her hemoglobin is hanging out at 83 which is amazingly good, her white blood cell count though has plummeted to .3  which puts us in the high risk of infection zone.  So I’m thinking ms. itchy itchy grat grat will have to be bene-drilled for the next day or so.  As soon as she has an open sore it becomes a huge infection risk.

Thankfully Laura dropped by and did some work on both Ruby and I – more me as I’m the one with the HUGE issue with hospitals and modern medicine.  Anyone who has known me a long time or has had similar experiences of long term misdiagnoses or dismissals for things that turned out to be rather serious can understand.  Modern medicine ain’t all it’s cracked up to be.  Except when it is.  And it’s all we have.  So I’m working through that.  Slowly but deliberately as Brian would say.

The intention is what shifts things so….I have the intention.

Ruby is eating which is a wonderful thing.  Other than that, just some random connections with other parents, a visit from the north by a wonderful friend Dave W who drove our little blue car down here.  Crazy huh?  What a terrific thing to do.  Thanks Dave 🙂

As you are all gearing up for the big holiday, I just want to remind you to hold each other a little tighter this year and know that this exact moment is what is most important.  That hug, that confession of love, that warm return and that certainty that we can change the world with a little love at a time.

I want to thank Ali again for her time, her love, her wisdom and her powerful self.  She is indeed a grand friend to Ruby and to all of us.  And thanks Darren for kickin ma butt.  I appreciate all that you guys do for us.

ithcy itchy

Gah, can’t get the poor love to stop scratching everywhere.  Suddenly she is very very itchy and we can’t work out what is causing it.  She’s had benedryl so I think we will move onto some other non itchy drug.  Man, she’s had so many meds it’s making my head spin.  I can’t imagine at this point we are even evaluating what goes with what or not.  Poor little thing. I spent some time “working the room” energy wise as I found the more agitated she got, I got too.   Just focusing on calm….kind, loving energy. 

Righteo, 10 minutes past and it didn’t go away so now the meds.  If she causes bleeding then she can get a bad skin infection.  So now for the next 30 minutes I will watch her and make sure she isn’t allergic to this medicine.  

Full moon tonight.  

 

The Bearded Man

Hello everyone.  I just want to make a very very public shoutout to my main man Brian.  Without this main man, nothing would function.  Thank you Brian for your tenacity, patience (which if you know ME at all, this is a big need), love and the juggling of the numbers.  We make a good good team.  Holling and Ruby couldn’t have a better Dad and I couldn’t have a better partner.  Thank you for all that you do.  Love you babes.

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.

*****

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.

Image