“Mom, I don’t want to go out.  I’m too embarrassed.”

We were heading to the playroom on the 3rd floor and it required about 15 feet of exposed space where someone might see her.  My heart stayed on floor two as we went up.  There’s nothing I can do.  We worked last night on her hair, cutting here and there and gently pulling and moving and freeing her scalp from itchy hair.  Every hat is a hedgehog on the inside.  I think tomorrow I will try to find more brightly coloured and fun scarves.  Today I bought an 9$ ball of silk to see if that will knit up quickly to a more reasonable cap.  So, careful steps in this waltz of healing old …well old everything.

Grandma and Grandpa kept Ruby busy while Brian and I took Holling on a long walk on Broadway in search of a good second hand shop.  If you know me, you know that’s my weakness.  I still say though that the one in Haines Junction is truly the best.  Tonight we were so tired that playing fairies was a bit boring as we couldn’t think of a storyline we could actually play.  We found funny things, we read book two in Ivy and Bean, she read along and remembered more and more words as we went along.  Part of this is the impact of the tumor on her pineal gland and subsequent surgery and also some of the chemo drugs impact learning.  I can feel her stiffen at words she used to know that seem strange and suddenly incomprehensible.  Anyone who knew Ruby before this knew her as a verifiable bookworm.  She was reading at a grade 3-4 level on her own and could easily complete grade 5 comprehension worksheets.  I soften the fear and remind her that these words are tricky and they will become clear again as we read more.  They know where they change.   A mother’s words of encouragement must feel hollow as she discovers more and more things that are changing for her.  All I can do is love her.

She is still undecided as to when, where or if she will shave my head.  Holling almost cried when we talked a bit about it.  He loves Hair Forest still and I think Ruby likes it still too.  I will go with her wishes.  She already cut my bangs. I will post some pics tomorrow.  I need to ask her permission to put the one with the scarf we put on today.  I had some rocking bow action on the top.

I feel the need to clarify something.  I thought before that our energy workers here in Vancouver were being supported by friends outside but they are doing this pro-bono.  They are volunteering their time to help us and a few others in here who reach out.  It’s amazing.  When I discovered that I was blown completely away.  This help they give is immeasurable.  I can tell you that for Dec 24-26 I didn’t ring them.  I didn’t text or email them about Ruby’s struggles or mine in the effort to give them time with their families.  Turns out I was supposed to and that they weren’t sure why I hadn’t.  Crazy beautiful love.  The time I had unplugged from that was the worst so far.  I tried to do it on my own and proved very quickly that I can’t.  Wow.  What a lesson for the little isolationist that I am. I love to give.  I am the one who picks up the tab when I can beat you to it.  I don’t like being the one to ask for help, to cry and need.  I’m not that sort of person.

I am now.

I am now.

Nights are tough.  Days are turned around.

It’s 11PM and this little monkey is sad.  She says she’s had absolutely no fun today because she fell asleep and wants to play all night.  We are trying to turn her clock around bit by bit so 11PM is where we are at tonight for a bedtime.  I’m being firm.  The nurse is patient and kind.  We’ve tried some songs, stories, 2 videos (until I realized that this was a stall tactic, not a truly tearful request), talking, lots of tears and frustration and It’s almost 11:30 now.  This is the way through the trees.  I’ll try a fairy story, that sometimes works.

***11:40.  Fairy story wasn’t fun enough.  In fact she hasn’t had fun since we got here.  In fact, she will never have fun again because it’s not fun now.  What do I say to this besides the same tired response of I love you, tomorrow is another day and if you sleep at night, playing is better in the day.  Her hair is falling out quickly now.  I’m getting ready to shave mine off.  Ready.  Can anyone every truly be ready for the absurdity of cancer and the resulting treatments and side effects?  The doc came by before his holiday and asked me a couple of times if I had questions.  I said, no just the same one…can we skip the etopiside?  He sighed and chuckled.  I wished him a good vacation.  I’ve got a reputation now.

Last night I insisted they remove a port in her leg because it was paining her a great deal.  The nurses didn’t believe it and called it anxiety which in some ways was true. In the physical way though it was truly painful and finally after 2 hours of gentle insisting on my part they gave in and removed it.  Tonight we had to redo the port and this time we gave her some Atavin.  Or however you spell that.  I can’t be arsed to look it up.  This gave her 3 hours of fun and a HUGE appetite which tells us now that 1. the port last night really DID hurt her (as the new one is not), 2. that mom needs to do the injection with no nurse in the room 3. anxiety is the bane of her appetite, 4. punctuation is pointless.

I’m all over the place today with my vinaigrette of the day.  I hope you are as non linear as I am and if not, you can cut and paste to your hearts content into a text editor of your choosing. I recommend Libre.

The toss and turn looks like it’s turning into the anxious pulling of hair.  I’m going to go and snuggle her even though she doesn’t want me to and see if I can soothe something for her.  Something.  Anything.  I feel a bit like a very helpful tomato.  Immobile, round and squishy and not very warm. I’m going to have to be sauce.

And now it’s 2:30am and she’s off to sleep.  Blissful, shorn hair sleep.  Tomorrow might be rough.  Or not. I cut the mats out of her hair  and most of it fell out in my hand as I did so.  Fresh surgical scars were dressed and bleeding from scratching has stopped.  Tonight I send her dreams of cool mornings in the spring, not frozen but fresh….dewy with that taste of promise unsprouted grass gives the nose.

Up and down and all around.

Ruby meets every challenge with words and courage now.  She’s yelling, she’s angry, she’s very sad to not be home and to not be with her cat Precious.  At least now I am part of that for her.  Before the last couple of days words were not something she could find or express.  She’s got her sassy back.  We’re off the crazy red itchy antibiotic now and a really wonderful doctor gave us probably until January 6th before the next cycle.  Her counts are still in the tank but her spirit is out.  She now has more power and control with those words. Last night I reached out to comfort her and she said “don’t touch me!  I’ve been touched by doctors and nurses all the time and I can’t even tell them no.”  I said, “no problems Ruby, you can tell me No.  I have no problem with that at all. I will hug your spirit instead.”

It’s the day before Christmas, the eve is approaching.  Ruby was very upset to not have had a chance to go out and buy presents for all her friends and family in the middle of the night.  At 5am after another health and dignity challenge, she couldn’t bring herself to go back to bed. Something was weighing on her mind. Until she’d made a card thanking Santa for giving all the sick kids in here good feelings in their hearts, she’d be awake.  So that’s what we did. 

Today she opened Mark Fletcher’s present, the beautiful horse.  She said it smelled like wood smoke, smelled like home.  That brought on “why can’t we go home!!” tears and conversation. Then she said she wished for a horse.  Ya, well ..hmm….on the list I suppose for possible wishes.  I just don’t know where to keep it in the Hospital.  Maybe on the lawn.  There’s enough grass that’s for sure.  This horse is her new best friend.  We’ll stick with the room sized version for now. 

I’m not very coherent today. I’ve had maybe 6 hours of sleep the last few nights….all put together.  Ruby told me I have to go to bed EARLY tonight so Santa can come.  I’m taking her up on her suggestion.  The resilience I see in Ruby is when she can be so so very low and sad and can come back with such vim and vinegar.  She’s a spitfire.  I just have to keep her feeling free to be that.  Freedom in striped hospital shirts. 

A couple pics of what she misses

Yes, I did say that. I don’t mean Hey everyone, Red Alert, man your battle stations.  What I mean is Ruby had another terrible reaction today to yet another antibiotic.  This time they have to keep giving it to her because she has an infection at the site of her 2 week old Spinal Tap.  She turned beet red 20 minutes in and started screaming.  The itching and pain was uncontrollable.  Fortunately Laura was here and worked her Wei Chi and lymph system while I held onto Ruby and Ruby held on to herself trying very hard not to scratch.  It was extremely traumatic.  For Ruby to scream like that, well it was a very strong reaction.  Fortunately the nurses know this kid now and they call her the little stoic one.  So when she DOES react so strongly she is listened to.  Unfortunately we get to try this medicine again in 6 hours at which time we will be prepping with Benedryl and a slower release of the antibiotic to see if a. she reacts even still or b. if she doesn’t, then we can keep on using it.  How many times can I say react?  Incredible isn’t it.

One baddie to fight another.  Anyone else getting the feeling that Western medicine has it completely ass backwards?  We punch everything.  We don’t move fluidically through healing preferring to ‘strike, hit hard, bash, fight, win, conquer and push”. Instead of using the body to help us to heal, to trust our patients and to intuitively be guided by less dramatic solutions. 

Fear guides the hand of Western Medicine.  I wonder how things would look if we asked less scientifically processed questions and began to see that we are more than the sum of our parts. 

Well, despite my high brow musings, here we are, pushing another drug to counteract another drug in the over medicating of illness.  And here I sit being told in no uncertain terms that I must work within the system.  I am so grateful to the energy workers and healers who work on us.  All of us.  All the time.  If it wasn’t for that, I am completely convinced we wouldn’t have made it THIS far.  I am grateful.  I’m grateful for the night nurse who is gentle and kind and let’s Ruby sleep in larger intervals.  I’m grateful but at the same time, the word grateful looks as if it’s spelled wrong. 

Just a quick update. Vincristine today. I completely forgot.  Also, a visit that didn’t work out and through Ruby’s disappointment a wall of sad broke free and washed over her. Waves of sad, deep sad.  I just sat with her and then the day got a bit better and we watched a funny movie and waited out the day, Dad came with Holling and we had a bit of time with each other, did a laundry exchange and they left.  She’s restless tonight, can’t sleep, uncomfortable and off.  We’ve tried it all and I think she’s just not feeling the greatest.

Sometimes I think I should just leave well enough alone but it’s hard not to be hyper alert in here watching for reactions (she’s had 2 in the last 24 hours) and hives (same again) and anything the nurses need to know.  It gets a bit ridiculous when I’m unsure if it’s something they need to know or if her scratching randomly at her leg and it’s just that.  Scratching an itchy leg.  *sigh*

Well I’m off to finish watching “about a boy” on my night watch and then it’s off to bed for a few hours.   

I have to say I really need to stop looking up these drug descriptions and side effects.  It does me no favors.  It is what they hand to you as if you have some sort of choice or input on what they do or do not give for treatment, as if you’ve been informed of the risks and have somehow agreed to them.  

Righteo, on that complex sad happy sad note, I’m off to lay in bed and visualize the grand Hoover of the universe, removing all the nasty stuff out of her body and leaving only beautiful healthy cells and light.  

night night bright light, clicky pumps and restless child, humming mini fridge, ringing bells from every room, laughing nurses and cheery salutes. Snow stopped. 

This is such a challenge.  I talked to Ruby a bit tonight, she’s been shutting down a lot.  She’s tough this one.  Much like her mom.  So I’ve been talking to her tonight about being brave.  You find many people say to her “oh you are so brave” and I’ve not said that to her.  I know not to.  It’s not bravery that puts you in the face of this intensely personal journey, it’s imposed upon you as a child.  She’s been poked and prodded and invaded on a regular basis since this all began over a month ago.  

This is intensely disturbing to a 7.5 year old.  She doesn’t get free will, choice or much power at all anymore.  A kid who could choose what to do in a day, what to study, how to dress, to run or ride or walk; all these choices gone.  So all this said with adults smiling at you saying “you are so brave” is somehow …confusing, frustrating and from what I gathered from Ruby today in our yes/no conversation it’s misleading.  

Bravery for a child when people say that with the unspoken message of “Don’t cry, be brave now” means just that.  Any emotion you feel that includes tears or anger makes you “not brave”.  I told her tonight that it’s very very brave to cry, to get angry, to be brave enough to be honest about how you feel.  That’s TRUE bravery.  It’s perfectly fantastic and important to cry and to yell and to express how you feel.  I told her she has incredible courage to face every day and to continue to be so polite and kind to all who try to help.  That’s courage.  Despite how we feel, we keep going.  That’s courage.  

Careful with that word “brave” now, grownups.  Are we trying to keep a small child from expressing her feelings of fear, pain and deep sorrow to spare ourselves discomfort?  I walk past a room every night where a small child cries in pain for hours.  Nothing soothes him.  His cries wrench my heart but they are real, they are expressed, they are valid and that child is getting them out.  I want mine to as well.  

She lays here and listens to me type, a small tear escapes from time to time and is blamed on “sleepy eyes” but I know better.  I just hope that she can find her freedom in tears and in telling me how she is.  

I can’t carry her burden.  I can’t take this away.  All I can do is walk beside her, quietly or loud, whatever she needs and hope that she can tell me what that is.  

*****

On a lighter note, if you haven’t bought a David Myles CD or Itunes album or 4, do so.  This man keeps writing us back, sending me chords to his songs so I can play them here.  The man is wonderfully kind, accessible and when I played a video for Ruby today that he is in, she couldn’t help beaming her lovely smile.  She adores him.  

Have a wonderful evening everyone.  Or morning if it’s tomorrow where you are. 

Hiya, just a quickie here.

WBC is at .1 so no visitors for a few days till she picks up. Her hemoglobin is holding it’s own at 84 but she definitely is all out of neutrophils. I’ve successfully avoided the forgetful nurse today.  She’s a nice person and I would completely have a tea with her but I think she should have a different vocation.  We got the sweet Irish one instead.  There are soooooo many good nurses.  They are the life of the hospital, truly delivering the treatment laid out, weathering the fear and the pain of the patients and their families, lightening darkening rooms and staying even keel.  It’s impressive.  I’ve always measured my hospital adventures by the capable and compassionate treatment of the nurses.  So raise a glass (because aren’t all nurses a little wild??) to them today please and thank your nurse.  Unless you don’t really like your nurse, then just find a gentle disengaging way to get a different one.  Still, no matter the skill level or ability, it’s a damn tough job.  Raise a glass anyway.

PS: It’s a gorgeous windy day outside.

Hey if any of you are bored and want a game of scrabble on Lexulous.com, sign up, do the email scrabble and link to me as iblixy.

If 100 of you sign up and play then uh….there may be delays between moves.  Keep in mind, I will bolster your ego by losing almost every time.

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.

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.  

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.