sorry for the wait

Hey all, things are moving and shakin as always in our lives. Right now we are out of hospital and in deep discussions with the team. We aren’t sure of what is to come but we have requested an MRI to track progression or hopefully NON progression of the disease. This will be done the week of the 17th of Feb.

This means we are going to sneak home to the Yukon for a break. I have to say though, despite our intense mad love for you all, Ruby’s immune system is severely compromised and we will need to limit visits to a minimum but we figure we might be ok with a school visit wearing a mask and not staying too too long. Ruby said she’s really keen on that.

Rigtheo, that’s my update, I’ll post more when I have time but when we are out of the hospital I have more demands on my time in the shape of a very bouncy little boy and a rather handsome husband as well as this magical, sassy and hilarious 7.8 year old gem.

lots of love, keep visualizing Ruby as healed and whole. Imagine her mind full of healing golden light, tell her body that it is whole and perfect. If we are all doing this a little each day, it will shift energy and heal. Just tell the cancer it’s time to go back where it came from, that it’s no longer needed here. Send it back with love.

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When speaking my truth had to get louder.

Hello all, sorry for the delay in posting. It’s been a rollercoaster few days. Ruby had a severe reaction (again) to a platelet transfusion and to the neocate they said no one is ever allergic to. I figure upper lip swelling and vomiting a good sign of a food sensitivity considering nothing else had changed or gone in. Unfortunately this wasn’t agreed with based on the above philosophy of “no one is ever allergic to this”. Either way, it was the weekend, I just started juicing and feeding through her line every hour and demanded a stop to the neocate. We were losing ground. Her ketones were through the roof, she wasn’t eating, had developed mouth sores from the chemo and things were not good.

She was very weak, very depressed, utterly despondent.
She just wants to go home. To go out of this place and not come back.
I’m with you there Ruby, I’m with you there.

So in the interests of keeping her alive in an unconventional way, I worked out a formula of (I had to give in on this point – duocal for the fat as the coconut oil solidifies in the teeny tiny feed tube) and kale,chickpeas(did you KNOW you can juice that?), apple, grape, spinach (not too much, hard on kidneys), carrots, avocado (which ended up being too think and requiring too much filtering), vega protein mix (again, not toooo much due to kidneys) and celery. So ….every hour for the first 24, every hour or so…..the next day… (fell asleep for 4 whoops), Monday reduced number of times and increased size of feed to 40 mls per feed and then here we are on Tuesday, fewer mouth sores, ketones gone, counts recovering (white blood cells) and a boost in her spirits.

So that’s why I’ve been busy. And typing less. I’ve been rather focused on keeping ole Rubes alive. It’s fun though, I’m turning into a juicing lovah.

The platelet response. Well. I said it since we got here. This is a sensitive kid. You must give her washed or saline replaced platelets. Each reaction becomes cumulative for this kid. One day she isn’t allergic to it but you expose her enough….each little reaction will make a bigger one the next time. I think this might be pretty standard for allergies. They develop. Not just appear. The fun part is convincing them that despite her not having any neutrophils or discernible immune system function right now that she is still having a reaction. Fortunately and unfortunately Ruby demonstrated that despite that….you can still have an allergic reaction. And a scary one. So…..today…more platelets. Today…they will be washed. Today I realized that as her advocate, saying things politely seems to get me nowhere and doesn’t keep her safe. It wasn’t until I spoke very firmly and clearly to the docs that this was heard. Shame huh? There is a feeling that you are included in the plans that hospitals make for your kid that you have a say that you have some control over how treatment is conducted. I suppose I learned a lot this weekend. I think we are all on the same page now. We had a meeting with the team, we all discussed her needs in here and came up with a care plan.

I have to say through all this the nurses are awesome. They see everything, hear everything and know whats really going on on the ground level. The docs are ok too..they just don’t seem to view things in a complete picture sort of way.  Difficult for them I’m sure being that there are more patients per doc than patients per nurse.   But, I think my old doc back east had it right.  He developed a course for new docs at the uni he was head of family medicine for.  He created a compassionate care course that taught doctors to listen to and value their patients opinions and to make sure that this wasn’t lost in the establishment of treatment plans and care.  You go Dr. Daws, you go.   They do try here though I find it’s reactionary rather than preventative.

I’m still debating nutrition with the dietician though they can’t fault the formula that’s getting her better right now.

We shall see. If I can just get her eating enough, the tube can come out…we can get up and about and perhaps even out the door for a while.

Big love to you all. If you thought I was granola before…..look out. I’m armed with a juicer now.

When you just can’t eat

So it happened.  All this buildup, all this talking, all this trying and Ruby did her level best.  She just lost her appetite 2 days ago and then yesterday at weigh she was down to 19 kgs again.

The tipping point.  The tipping point into another procedure that she was terrified of no matter what anyone said about how “easy” it was.  Fair enough.  I was the one that had to be put out completely during an endoscopy last year due to abject terror and out of control behavior.   So I was NOT the one to talk positively about this because I’m sure my words did not match my feelings and when that happens for me, I feel like that person is speaking a language I can’t comprehend.  Fortunately Laura (I laugh because when it comes to Laura Scott I’m always saying things like “fortunately” and “luckily” and “ooo just in time”) was here and sat through the procedure.  We discussed talking about it before hand and so we did so.  We let Ruby shed a thousand pounds of sorrow followed by rage followed by mute anger and defeat.  Laura helped her through, showed me how to validate this and to let Ruby know that we are trying to help and is often said “the only way out is through”.

You know, I think it’s odd that as parents we are told to not show our sad feelings.  I think that’s counterproductive.  Well that’s complete shite.  I don’t think kids should be afraid of seeing their mother look a bit sad and shed a few tears.  Ruby seems to show more feelings and express more feelings when I occasionally let it slip that I’m sad for her and that I feel terribly powerless through all of this.   Today the nurse said “maybe next time you should leave the room if you can’t hold back your tears.”  And I thought wow, that’s such a carryover from our days of “parents can’t be seen to be human…the only way to maintain authority is to appear stronger.”    I’m not stronger than my kids in fact I think they are the better of me.  Not that this is any sort of bizarre competition.  Needless to say, yesterday was a very very traumatic day for Ruby and by simply being her mom, for me.

So little to control, so little I feel I can affect or contribute to.

The good news is, with the feeding tube, Ruby asked for dinner (the wonderful Shepard’s pie Brian had made and brought as well as the apple crisp) and ate a whole serving of each.  She felt better later that night, less defeated.

We all just want to run out of here.  We all just want to go home.  To our snowy (well maybe less so since the latest chinook) home with our wood stove, our ever expanding dog and cuddly Precious the cat.

Here we are not even halfway.  Not even halfway and my child is at this point.  Day by day, sometimes minute by minute.  Filling the space where fear dwells with love and light and green green trees.

Much love to you all, Image

Over the hills, down in the valley

Well the fever is abating finally.  Up and down, up and down.  I’m just waiting for them to stop the antibiotic because I am almost 100% sure that all the cultures they took are negative.  The antibiotic is REALLY hard on the stomach so small wonder Ruby can’t keep anything down and when medicated, her anxiety keeps her from eating.  I’d feel the same.  For a healthy person, I could just say, meh, we’ll just keep the water going and see how you feel tomorrow.  With the spectre (and I say that because what they PUT in a feeding tube will make you shudder – hello GMO Corn crap) of the feeding tube lurking, we need to stay one step ahead of it.  The more interventions..well just like with childbirth, the more interventions, the more interventions are required the manage the results of the interventions.  See?  I get stuck on a word.  I feel like a hitched sweater.

Laura was here yesterday and help clear the results of the Vincristine that was run and other things that came up with Ruby finally woke up after 12 hours of sleep.  The first big block of sleep she’d had since this round started on the 6th.  Just give that a go, wake up every 1.5 – 2 hours for 7 days straight.  It’s pretty intense.  Needless to say, she’s perkier today and I slept (and apparently snored – though my source is unreliable as she was SOUND asleep) along with her till 11am. 

Ruby told me to drink more coffee today and blow my stinky breath on the doctors to keep them out of the room. 

She’s sitting here right now watching another show about the deep sea (kids show – still sort of educational) and is eating lightly steamed green beans.  What she requests, she gets.  What a kid, when offered non-dairy ice cream, snicky snacks that probably aren’t that good for her…or her choice…she chooses “lightly steamed, not mushy” green beans.  Nice. 

Well that’s my news report for the day.  I’m spending lots of time at night growing visual gardens in the room, putting up stars above our beds and hanging Ruby in a hammock and gently swinging her in a loving breeze.  This is my image before we shut our eyes. 

Quiet Saturday and sleepy sunday

Well it’s been a blustery quiet Saturday, with wind warnings and storms blowing in, Brian and Holling stayed put in Richmond and Ruby just snoozed the chemo away.  Today is another heavy chemo day.  She’s had a rise in temp again but I’m starting to think this is just a factor of her body dealing with the chemicals.  Happened with the first dose this round and now this intensive two day dose…here it comes again.

I’ve been playing this game Eufloria deep at night.  It’s got this ambient music and simply and lovely game play.  Very relaxing.  I’m not very good at it but it’s a time passer for sure.  I’d do better reading something that stimulates my brain but I’m digging the carb overload and computer game zone too.  Ahhhhh rice crackers and gaming.  Just like the old days. 

Ruby asked for the uke to come back to the hospital so I can play for her today and low and behold, just in the nick of time came the chords and lyrics to lovely David Myles’ songs.  What a fab guy he is.   I mean who does that?  Some crazy ukulele playing fan (and come on now…a BARI ukulele which we all know is a pretend guitar for people who can’t be bothered to learn to play guitar) who asks for chords …some nutter from the Yukon and there he is.  Like a charmer.  Ruby’s favorite video right now is …well actually it’s a toss up.  The Simple Pleasure’s video, the How’d I ever think I loved you video or the Maru introduction compilation cat-in-a-box video – bundled of course with the comparative Precious Christmas Special.  So David Myles, you are as special to Ruby as all cats.  That’s sayin something.

I think I’ll start with Maureen.  That’s her favorite.  I have to watch playing “How to Believe”.  It makes me cry which of course makes me suck at singing it.

Righteo, time for blood cultures on a kid with hardly any hemoglobin.  Fortunately they compensate for taking a 6 pack of blood (btw it’s 6 little bottles, vampire mini-bar) by replacing it with someone else’s.

 

 

Better morning

Hey, Mama!  Get your coffee, I want to play and you need to wake up. 

HA!  My kid is back.  It’s such a lovely thing to hear, the sassy pants.

We are waiting for levels to come down to start the next 2 protocols and we are up for another night of every two hour wakeups.  I have a system now…I leave the light off in the bathroom and tell her she can keep her eyes closed and I’ll do all the rest.  She was much happier with that.  I even got a few smiles from her when I put her in her bed and gave her nuzzles every tuck in.  It’s kind of sweet being able to say goodnight to my kiddo 6 times in one night.

When Ruby woke up at 7 she said “Mama, smile!  You aren’t smiling.”  Which was funny because I was completely asleep. 

Namaste