Hard conversations

I find that when I don’t write for a long time, it is because I am in my head.

Generally speaking, I always think too much.

I start a blog and then I reflect…..

“Nope, I don’t want to sound so negative”- Delete.

My hands hit the keyboard again…..

“Nope, now I sound way too Polly-Anna positive and disingenuous”- Delete.

Truth is, I have a really hard time writing when it comes from a place of what I think people want to hear instead of what I know needs to shared.

As the ol’ adage goes ‘the truth that will set you free’ right?

So, here goes nothing.😉

We are entering the sixth month since Logan has been re-diagnosed and for almost half a year now, our world, has been turned upside down and rocked by this new (and so damn old) reality.

There are good days and there are bad days but most of the time the bad days outweigh the good. We’ve struggled to stay positive and hopeful and patient but as the months have ticked by we are finding it harder to do so.

I haven’t written because words are hard to find and they are even harder to say.

The latest setback of Logan’s seizures have really messed us up emotionally. For anyone who has encountered, or lived through seizures, you know how terrifying they are and how suddenly your life feels like you are perched on the edge of a cliff.

Panic.

Anxiety.

Loss of control.

Fear.

Unsettledness.

Worry.

This is cancer. And it sucks.

As much as I would like post blogs making it all look as easy and inspiring as Lance Armstrong did, we are not machines, we are real people who are haggard and run down. This is the fourth time our child has undergone cancer treatment and this time is SO (emphasized ten million times) much harder.

Emotionally.

Physically.

Spiritually.

Not only are Jared and I exhausted from the almost 12 years of caring for, planning around and worrying about someone with cancer, Logan is so tired too. Mentally, yes, but her body is also tired like I have never seen her before.

She doesn’t have the ability to just pull herself together (even for the fun stuff) and although she wants nothing more than to feel better, most days she just can’t.

I can count the number of good days (good days meaning awake and engaged/ all relative) since relapse on one hand, and even though we are doing our best to make each day count, the truth is sometimes the quest to do so is a struggle in itself.

We want so desperately for every moment to be the best they can be.

We worry about running out of time (but are NOT giving up hope). We are yearning to cross off each and every fun item on our proverbial bucket list.

One would think, it would be what you do if faced with possible death. I mean, who wouldn’t want to cross the finish line of life with an array of gold stars for living life to the fullest?

But, honestly I am learning this ‘idea’ just isn’t the way it is in reality.

You take each day as it comes.

You are forced to pick out the good moments and you try not to fall victim to the day’s allotment of shitty circumstances. You move the goal post and hit the pause button. You let go of expectation.

Logan is happiest when she’s snuggled into her bed. Period.

She loves it when the world is quiet and she has the ones she loves most beside her. She likes clean sheet day and fresh jammies. It makes her happy when one of us lies with her and watches T.V. She likes a back rub or having what little hair she has left blown dry. Most nights she tries to get me to sleep with her.

She likes to giggle and laugh while we look at our phones. She thinks the filters on snapchat are fun and she enjoys gossiping about the world around her, but she has little interest in participating in it right now.

Chemo is taking its toll, no doubt.

We are in the thick of it.

This cycle has been delayed because her ‘counts’ are just too low to hit her again. We are checking every couple days (and secretly hoping) that the doctors pull the trigger and start blood transfusions. There are pros and cons to doing so. We know giving blood is not a magical cure but somehow it would just feel nice to have a plan in place to help boost her up instead of knock her down all the time.

I am starting to wonder if I am pushing her too hard.

I am starting to wonder if I am pushing all of us too hard.

My therapist thinks I need to do work on accepting what ‘is’ instead of focusing on what ‘could have been’ or what ‘may be’.

I know she thinks I don’t ‘get’ where we are at.

Maybe it is because I try to avoid the conversation at all cost. Maybe it is because when she talks about the possibility of Logan dying, or spending more time at Canuck Place, I talk about the possibility of a POG study or Dr. Toyota using his laser or trying a different more aggressive form of chemotherapy.

Maybe, somewhere on her list of psychological red flags she thinks I am in denial.

But, despite any assumption, I do…..

I fucking ‘GET’ it.😩

Trust me, just because I am not inconsolably breaking down or picking out songs for Logan’s celebration of life doesn’t mean I don’t ‘get it’. I know where we are at.

I live it.

Every. Single. Day.

But instead of succombing to what is in front of me, I am choosing.

Every single f’ing day I wake up and I look at myself in the mirror and I tell myself to get a grip.

I tell myself that all I have is this day.

This one.

I tell my self that even though my life and these circumstances are out of my hands and I feel like I have zero control

I DO!!

I have control over my own thoughts and everyday I tell myself I am not going to let myself go crazy.

I am losing so much, but I am not going to lose myself as well. I am not.

I ‘get’ how people might think I am bananas when I talk about our next family trip to Mexico or our 90 day plan, or selling our house to move to the Okanagan or when Logan goes back to work, so she can start paying some of her own darn bills.

Trust me, I hear myself and I know at this point it sounds far fetched to you, but it doesn’t mean I don’t ‘get’ it.

They, (doctors, nurses, therapists, pharmacists, the Canuck Place people, and everyone else on our healing team) suggest our life is now about ‘living in the moment.’

These words are really starting to bug me.

Almost as much as ‘You just have to be positive and quality of life’.

If you ask me, these statements are pretty loosely thrown around.

Easy to say and sound like perfect words to use, in theory, but in reality, almost impossible to practice.

I am starting wonder if these words are just part of protocol. If healthcare providers are instructed and trained to insert certain lingo at different stages of treatment? How can it be possible they all have the same language?

I, can however, read between the lines.

They think I need to start having ‘THE HARD CONVERSATIONS’.

They think maybe I am living in a bit of a fantasyland, that maybe there is a disconnect and we think Logan will be able to go back to her ‘normal’ self again.

The hopeful conversations that ‘they’ used to have to inspire us are now conversations they fear having just incase our perceived denial is worse than they think.

I can feel the shift in our meetings. Every single person is starting to lean into the hard conversations with us. Even when they try to be soft about it.

Our talks usually now start with a weird pause, drooped shoulder, tilted head and long deep breathe before the words, “Sooooooo, how are things?” Or “I am soooooo sorry to tell you….”

I let them go through the process, because I also ‘get’ this can’t be easy for them either.

But truth is, what ‘they’ don’t realize (despite all their experience and training) is that ALL I do is have the hard fucking conversations.

All. Day. Long.

I have them with myself, with other doctors, with strangers and with friends. I have hard conversations with benefits providers, pharmacists, Logan’s pals, other cancer moms, and my favorite nurse (poor thing, she gets all the recaps) 😘

There are hard conversations with people in my life that just ‘don’t get it’ and never will…and then there are the conversations where I don’t have to say a word and there is just space and compassion making words even harder to say.

I have hard conversations about the why’s? the when’s and the how’s? About the possibility of things getting worse, and about windows of opportunity when things might get better.

I have hard conversations about ethics. How far does one go to save someone’s life?

I have hard conversations with my husband who is feeling trapped at work and in this life. The fear around money and the financial burden of this resting solely on his shoulders. The repercussion of giving up an opportunity for fresh start and a new career hindered by this cancer the fact he can’t fix any of it. All he wants to do is provide the very best for us and he feels like he’s failing. Every. Where. He. Turns.

I have hard conversations all the time with Brody who just wants freedom and fun and is so damn tired of always being stuck at home.

I have hard conversations with long time friends who are now afraid to share their own lives upsets and feelings with me because in their words “It is nothing compared to what you are going through.” (P.S. NOPE it is not- and thank God for that- but life is not a comparison or a competition. Please indulge me with your normal stress’ I really need it.)

I have hard conversations with people who I refuse to even engage in conversation with.

But the hardest conversations I have are always with Logan.

Yes, we talk about the possibility of her dying.

How can we not?

This fear is always right there on the surface behind every headache or weakness, or now, the worry of every seizure. We think about it as we channel our energy hoping for the cure with every dose of chemo. Thoughts around it linger every night as another day ends and we wonder how many we have left.

Logan doesn’t want to die. Period.

She has told me she isn’t ready and still has so much living she wants to do but she also fears what life looks like the way she is now. She fears being a burden for the rest of her life.

We tell her she isn’t a burden, but she sees us struggle and feels the fear we have (but don’t say) about this being our permanent reality.

Logan isn’t much for talking about her feelings so when she opens up, those are the REALLY hard conversations.

I am used to speaking for her. Most of the time she asks me be her voice for everything. She trusts and expects me to step in and advocate for her. She has a very hard time getting her thoughts from her brain to her mouth, so, most of the time, even if she wants to or needs to; she just says nothing at all.

She keeps a lot of feelings bottled up for fear of judgment or misunderstanding.

Listening to her struggle to articulate how bad she feels for things she can’t control or hearing her fears and sadness, knowing there is nothing I can say or do to make it better is heart wrenching.

Conversations between us where the tears outweigh the words are some of hardest conversations I’ve ever had.

Logan is strong, her spirit and her will to survive is fierce despite her bodies fragility. She doesn’t want to give up. She is not ready and she is very clear in that.

We have the hard conversations but we are doing our best not live in them every single day.

We ‘get’ it.

This is NOT over our heads.

And just because you see us smiling or joking, or propping her up in a wheel chair at a hockey game, or lugging her around the mall to buy new outfits for our next holiday doesn’t mean we are in denial of where we are at.

It means that despite not having one single say in any of this, despite feeling trapped and ripped off and scared as hell, we do have choice.

We have a FUCKING choice- (hear me universe???) and as a family we are choosing how we going to face Loggie’s cancer and how much power we are going to give it.

We are CHOOSING to find pockets of goodness and fun. We are CHOOSING not to let it break us. We are CHOOSING to continue to make plans, to book holidays, to renovate our house and to freshen up our space and move forward. We are CHOOSING to laugh instead of cry, who we want to surround ourselves with, what feels good and we most of all we are CHOOSING how we need to be supported during this very messy time.

At this point, all we have is choice so guess what?? We are grabbing it by the balls.😜

None of us—have a choice in when we die, but we ALL have a choice in how we live.

This life, our life, and this fourth fucking time facing cancer, can piss off, take a hike or at least know it’s place.

This is strictly on our terms. Period.

It is Logan’s terms and however she wants to rock out her time here, is how we as a family will roll with it.

So, screw the hard conversations. They aren’t hard.

They are just, simply, necessary.

I learned a new word this week- learned, as in felt (I am starting to think that feeling is only way to learning?).

Embrace.

I’ve added it to our motto.

#Embrace. #rollwithit

So, screw the hard conversations, for right now. We are far too busy trying to live life right now to dwell on them. ❤️

It will be OK…….????

I started writing this blog three times.

The first time it was about Brody. He deserves a blog and I have so much I want to share about him. It is something that will be written but I’ve had to pause from the words I wanted to say about my boy because Logan’s health has declined and that comes first.

Her decline made me spiral into devastation and worry and turmoil and my second attempt at this blog started by writing about the beginning of the end.

Then, those words were also halted when yesterday she decided to get out of bed, watch the Super Bowl, eat on her own and do some online shopping. Now here I sit again feeling completely uncertain of where my thoughts are, teetering somewhere between hope and fear (as always I suppose).

I am finding it hard to catch my breath these days.

There is this a nagging, constant heaviness and pressure on my chest making it difficult to take even one deep inhale.

I am trying so hard to keep it all together but caring for Logan has become so much more demanding.

Both Jared and I are physically drained from the obvious tasks, but emotionally I feel like the dramatic swings from possibility to devastation are also taking a toll.

Inside of me everything feels so intense, rigid and tight.

I can’t ever seem to relax my shoulders, or release my breath. My jaw feels clenched and I have this constant dull and nagging headache that won’t go away.

My body feels foreign, almost mechanical and robotic, as I move though my day yet everything around me feels flimsy, fragile and about to fall apart.

It takes everything out of me not to lose control, or scream at the top of my lungs and cry. At times I can’t sit still and then just as suddenly, other times I can not move.

I am paralyzed and frozen from the heavy weighted fear that is resting directly on my heart.

The pressure around me feels like it is about to explode. It is unbearable.

Worry and helplessness and panic and losing hope is like a pot of water boiling over with no switch to turn off the heat.

I am doing whatever I can to stay positive and in the moment. I am trying to channel whatever hope and love and f’ing optimism I can because I know…..

The only thing scarier than what is in front of me, is the possibility of a life without her.

But how can we go on like this?

Things are getting worse (or at least they are not getting any better.)

I have a hard time even writing words of dwindling hope because they feel like I am giving up.

I am not.

Logan is not. She is still so kind and sweet and accommodating. I know she feels terrible that she can’t do any better than she is and that is hard for me as her mom.

I want her to know she is always enough.

But, I am starting to understand this disease in a new light and cancer doesn’t give much space for what you want, and it also doesn’t give a shit at how hard you are trying.

Instead it insists. It jolts you, slaps you upside the head and it forces you to face what is right in front of you no matter how hard that is.

There are no points for being stoic but I’ve learned you also are not diminished for faltering courage.

There are good days and there are bad days. Sometimes, the truth is the bad days outweigh the good ones (even when your kids get to do amazing stuff like being stage with the Canucks).

Joy and struggle can coexist.

The fear of saving Logan while watching her suffer and the fear of losing her while contemplating a life without her become equally as scary.

There are times when don’t know what to wish for and the free space in your head to think about it all just messes with you.

Logan is not well.

Yes, she looked great at the gala (pictures will do that) and she really did rally very hard to watch her brother give his speech, but she also paid dearly for that night out.

Another shitty thing about cancer….

It keeps a tally.

When you spend all your energy in one place it seems to punish you. You can’t bounce back or replenish quickly.

Two days after the event Logan had a seizure.

Luckily I caught her.

Thank god for Jared.

He caught us both.

I don’t say enough about the JayRod. Really, he is the most committed and remarkable father ever.

He never leaves any of us.

He always seems to be there when we need him and he is unwavering in the commitment he made as a husband and father.

As I screamed in horror, and tried to engage with my sweet girl by calling her name, Jared gently laid her down on the carpet and rubbed my arm.

“It’s ok honey….she will be ok”

I sobbed.

Logan’s eyes twitched and her hands shook. She laid on the floor stiff as a board.

Jared remained so incredibly calm and when Logan finally came to, he smiled at her the same way he did at me, rubbing her arm and saying

“It’s ok honey….you will be ok”

Logan slept the rest of the day.

She had one more small episode on Saturday morning and then felt terrible all day. Sick, shaky and so tired we couldn’t even understand what she was telling us when she spoke.

Jared took my hand.

“I have to be honest. Honey, today is the first time I can honestly say I am NOT sure if it will be ok”

I spoke with our oncologist and based on Logan’s exam and symptoms she also believes Logan is likely having seizures.

Combine this with the blood pressure drops, chemo, low blood counts and the tumour and it’s hard to distinguish what the hell is going on and when..😩

The plan is likely going to be to start a new seizure medication this week.
We have, however, decided to wait on the EEG which will happen in the next couple of days before we decide which one to give her.

Loggie is on so many medications and we want to be sure this wasn’t just an isolated event before we load her full of more pills.

I’ve spent the whole weekend in turmoil.

Thank god for the snow days because to be honest, I couldn’t imagine facing the real world.

I keep asking myself what I am really trying to do for her? Is this chemo going to help her? (God I am begging)

Is there anything I am missing?
Is this fair to her? Am I being too hard on her? Or too weak?
Is this what the rest of her life is going to look like, pain and sickness and struggle?
How long is the rest of her life going to be? Why? Why? Why?
How are we going to find the strength we need to get through this and come out stronger? Is it really possible?

Sadly, at this point, I have learned the only answer I have is-

I don’t know.

I can’t possibly know.

But we must trudge forward anyhow ❤️

The (wine) glass is always half full

It’s all in the way we look at things….

It is true, we all have a choice.

Optimism or pessimism?

Is the glass half full or is it half empty?

Today, I am trying to SO damn hard to be an optimist.

Last night, I felt like a crumpled mess of disappointment and negativity and a total pessimist.

Deflated.
Angry
‘F’ this’
Sad

MRI day has always been such a tough day- this one was exceptionally hard.

We needed a win.

But instead what we got was more of the same.

Life is like that, you don’t always get what you want and it always comes down to you to decide how it’s going to be.

(Life all over the map lesson)
Your own perspective is always your own reality.

The MRI results show no change from Oct 26.

Sigh 😔

On hand this is great news, right?
Stable-
Status quo-
Not worse-

But on the another it is….well….just shitty.
Not better
No improvement
Questionable response
A whole bunch of signal enhanced abnormalities still lighting up the scan.

But the scan is only a picture.

We also have to take into consideration how the patient is doing.

Logan had a full neurological exam done yesterday.

It’s been about 6 weeks since we’ve last seen her oncologist.

The result- also a question mark?

Some things have deteriorated.

She has less reflexes in her feet and ankles. She has tremors in her hands and there has been a decline in her dexterity and fine motor skills. She gasps more frequently for air, her voice is softer and she has less movement in her tongue.
She is also having a bit of trouble with bladder sensation.

So that all sucks.

Top those symptoms off with a scan that doesn’t look any better, a kid that is tired all the time, who is still not eating and drinking enough to sustain herself, and it’s easy to spiral into a really dark place and think only the worst.

We were told this chemo was our best chance of shrinkage and improvement.

We were told we’d hope to see some of these improvements in about 3 months time.

We have clung on to those words for dear life.
Yesterday, we felt desperate for good news and today, here we are.

No further ahead, no further behind. Stagnant is starting to feel very stifling.

We want better than this.

We NEED better because we don’t have a tickle trunk full of possibility and cutting edge treatment just waiting to be tried.

The truth is we don’t have many cards left to play.

No more radiation, a huge question mark around surgery (last resort, huge risks and possibly no better results) and not many other chemo options- maybe none better than this. Yes, we’ve tried naturopathic treatments (and are using a few now). We’ve had healers here, done reiki, made her eat dried roots, and handfuls of supplements. Shes taken classes on mindfulness and visualization and we’ve thrown caution to the wind and lived in the moment. We’ve given back, raised shit loads of money for research and tried our best to do everything right.

So, yes, damn it- we want more

But that is not how this works.

There is no tally sheet because of what you’ve done right. Cancer doesn’t work that way and it is hard to accept having things out of your control.

It is hard when you don’t get the great, promising news you long for. It is hard not having a miracle to share (yet).

BUT

This is where we are at.

So, in the spirit of never giving up and being optimistic and drinking from a (wine) glass that is always more than half full (#truth) 😉🍷

It’s not all bad either

Maybe, this is just what progress looks like for us right now.

A pause.

In tumour growth
In time
A pause to strengthen, to heal, to accept and to just be- in these moments, together.

All good thing come to those who wait….

Isn’t that how the saying goes?

The scan is not worse- so maybe chemo has stopped the growth. Maybe it will just take some more time for it to regress. Maybe that will happen as Logan gets stronger. Maybe this chemo will take longer because it is not such a shock to Loggie’s system.
(God only knows her counts have been better than expected.)

Maybe things will only get better from here?

Yes, we could give up.

Switch to another chemotherapy or try a different regimen but we’ve decided not to, just yet.

Our oncologist is remaining hopeful about this one so that means we are too.

We are focusing on baby steps.

There have been some small improvements.

Her blood pressure isn’t terrible all the time and she seems to be responding to the BP medication better.
Her swallowing has improved.
She’s walking more on her own without the wheelchair and her nutrition is better. She has finally started to eat a bit by mouth (2 days ago she ate enough not to use the tube).

And so it has been decided to hold steady.

To be patient and to trudge forward and carry on with this chemotherapy, for the time being.

The plan is to see her oncologist more often for neurological assessments. Likely, every couple weeks.

If things get worse, we will adjust some of the doses of her chemo to see if any of her deterioration could be side effects from treatment. If that doesn’t work, then we will stop this treatment and come up with a plan B.

The current goal- 2 more cycles of this chemo and then another MRI in April to reassess.

The current hope- we are making the right decision.

She’s had 4 doses of round 3 chemo since last night. She has 13 more to go over the weekend.

Let’s pray….

Third time’s a charm ❤️❤️

Do your best (even if it sucks)

It was bound to happen….

The crash.

I could feel it coming on, festering just below the surface.

Anxiety is like that.

Choking.
Smothering.
Pressing.

You swallow it down, trying to avoid it. Thinking if you treat it like a spoiled child and don’t give it any attention sooner or later it will stop being so disruptive, right?

Then, one day you find yourself in your therapists office unexpectedly gasping for air.

Puking.
Bawling.
Collapsing.
Shaking.

Crumpled up on her sofa, uncontrollable.

Where did this come from?

You try to make sense of what is really happening…
Is this what the result of denial feels like?

I thought Mexico might help stop the meltdown from coming. I felt emotional and shaky for weeks…

Maybe, I was just over tired and needed some sunshine. Maybe all I needed was to get away, run away from reality and have a change of scenery and a few margaritas?

No matter how bad things are, they are always better in Mexico….right? (Yes they are 😉☀️)

But the thing is, Mexico is only temporary.
Mexico isn’t reality, and coming home after escaping reality for a few days has made the return to the norm exceptionally tough.

It is MRI week, so that doesn’t help.

Ugh.

The first MRI since Logan’s relapse and I’ve got scanxiety like I’ve never had it before. It feels like EVERYTHING, her whole life and our whole world is riding on the pictures we are about to see.

Is the chemo helping? Will we have to change course? Is there a back up plan?
Will there be an improvement?

I don’t know-

And thinking about it all, trying not to get too far ahead, and keep my emotions in check, is so incredibly fucking hard.

I want to scream. I want to beg, I want to run yet I feel paralyzed inside- out of control, yet motionless and helpless.

It is out of my hands and it will be what it will be. I know in theory I have to accept what ‘is’ but inside I am fighting it- all of it.

This can’t be the truth…Our life? It’s not possible…I hate this.
I want us to have freedom from cancer but I’m scared to ask for freedom incase what we get is not the freedom I long for.

I don’t know what to wish for.

What to ask for?

How to be ok?
Pictures don’t do justice for how Log is really doing each day.

She looks amazing in photos and has this incredible ability to light up the camera but a picture is just a moment in time.

There have been improvements, I think?

I seem to ask everyone what they think too.
The answer is always iffy. Maybe in some ways she is better? But maybe just doesn’t seem good enough…

Overall, I know.

She is just so tired-

All the time.

95% of all her nutrition and fluids are still going through the tube- she’s still not eating or drinking anywhere near enough to sustain herself and when we check her blood pressure because she’s complaining of symptoms, the numbers we see are terrifying.

There are times when I hear her gasp for air or I see her shaky little hand having difficulty opening something, or she’s off balance, or slurs her words and I feel sheer terror because I know some of her symptoms are indeed worse.

I feel the panic- the restlessness- my mouth feels dry, my heart skips a beat. I am jittery and I can feel it creeping in to me.

The fear.

I try my best to pull myself together and avoid the complete spiral off the deep end.
Thank god I still have the strength to control that.

I clean.
I organize
And I try to keep busy, making plans, making food, making a mess so I can clean it up.
Moving, for me is imperative.

When I stop there is only time for thinking….

and thinking is just too hard.
I tell myself-

“Don’t go there.
The chemo is working.
What you are seeing is inflammation from the destruction of tumour. The symptoms would be the same….
Don’t go there, Jenny….
It’s too scary….

You can’t afford to fall apart.
Stay strong for Brody, Jared, Logan. Think positive.

Do your best (even if it sucks)
DON’T fall apart. DON’T cry. DON’T start worrying, panicking or letting the bad thoughts in.
They are only thoughts. Not facts.
Wait for the facts.
Make a solid plan-
Keep moving”

And so it goes.

Then, there is the flood of guilt. Such a useless emotion- but it’s also always lurking, right behind the fear, in front of the sadness.

“I wish I was more grateful for the time Logan was stable. Why didn’t I let it all be good enough? Why did I have to feel so angry for the challenges Logan faced over the past few years when I could have just accepted things for what they were?”

The tears flow

“I wish I would have enjoyed those stable years more.
Maybe I shouldn’t have pushed her so hard. Been so strict- or tried so hard to think that her life could be normal?
I promise if we get another chance I will do better….”

**** And just like that I am forced to pause from writing because Loggie starts puking 😩and I’m pulled back into the moment****

I guess it is a message from the universe-jolting me back.

I get it.

“Stay present, Jenny.
Rub Loggie’s back.
Check the tube.
Call the hospital.
Arrange her meds for the day (add extra anti-nausea)
Get Logan’s pre chemo blood work done.
Check her blood pressure
Do a bolus
Throw in a load of laundry,
Vacuum upstairs
Change the sheets.
Check the order of feed bags that arrived
Clean last nights feed bag
Call special authority about meds not covered. WTF?
Get the wheelchair receipt
Contact benefits
Make sure chemo is ready for pick up.
Eat.
Shave your legs
Breathe.
Breathe deeper.
Keep moving.
Do tangible things.
Stay strong.
Think of something fun to do today.
Don’t fall apart, Jenny-
Under no circumstances can you fall apart.
Keep your shit together.
Find a new tenant for our rental property??(SHIT not this now😩)
Smile.
Remember, people are rooting for your family
They think you got this–believe them damnit!
One more deep breath….”

And so it goes–

Up and down like a yoyo it is a rollercoaster ride.
The reality that every single person/family who lives with cancer knows- every day is different and life, emotion, and your own bloody sanity can truly be all over the map.
MRI and round 3 of chemo starts tomorrow.

2017 is only 17 days in and it already feels like it has been a long year.

Can we go back to Mexico now 🇲🇽 🌴☀️🍹?

Adios 2016

As 2016 comes to a close, I am lost in thought.

What began as a year with so much excitement and promise slowly morphed into a total shit show and as the final days wrap up I am deep in reflection of what it all means.

January 1, 2016 I was in Bali.

It was a last minute decision to fly to Indonesia but I felt deeply connected to the universe and all the infinite possibilities of where life was guiding me and going to Bali felt like the right thing to do.

I did yoga, I rode bikes through the rice fields, I met Michael Franti, I sang at the top of my lungs and cried from the depth of my soul.
I wrote my resolutions and explored some pretty deep thoughts. “What would life look like if I decided to focus on how I wanted to feel instead of what I wanted to have/achieve?” God only knows I needed to let go of ‘the picture’ I’d painted for a life that could never be.

I did all of this while staring out at the vastness of the ocean and rice fields, a million miles away from my own reality.

I felt nothing but possibility.

I had ventured outside of my comfort zone by traveling alone and I felt pretty strong and confident doing so. I was sure that 2016 was going to bring forth a big shift for my family and for myself.

It was time.

Time to leave cancer behind and move forward. It felt good and it was the first time since 2005 I felt this way.

We were approaching 11 years since diagnosis (11 is our number 😉).

Logan’s tumour had been stable for 5 years and things just seemed to FINALLY be going well.

We went to the Ellen show and committed to living our life in the front row.

The message was clear. It was time for the next step.

Logan completed her first year of college and got a job working in a daycare. A huge milestone!

Brody got an acting gig and did his first commercial, he excelled in school and as soon as he turned 12, he went from being a young boy to a young man.

The JayRod negotiated a new job while never losing focus on the tasks he had in front of him and I went to India (totally outside of my comfort zone) to volunteer and give back with a group of cancer survivors. My fresh chapter had begun.

It had been a long time since I felt sure about anything but I felt pretty sure about 2016.

I was turning 40 and even though my life had been somewhat of a cluster fuck for the past 10 years I could feel a burning desire to get back into the world.

Change was coming. It was on the horizon and I could almost taste it.

I say almost because we all know what happened next.

The cluster fuck continued, cancer resurfaced and all that I had learned, or thought I had learned, was once again put to the test.

Only this time the prognosis for our sweet Loggie was worse. (I hate how cancer works.)

Hope felt less prominent and the challenge in front of us felt greater than any other to date.

So how does one find the strength to go on?

I am asked this question all the time.

The answer is simple…you don’t.

Find it that is.

The strength is already there. It is just a place you haven’t tapped into yet because you haven’t ever needed it.

I think sometimes we don’t know our own strength because we don’t have to.

People always say “I don’t think I could deal with what you do”

I always reply, “Yes, you could.”

You always find a way to get through what is front you, unfortunately, you don’t always find a way to get over it.

So, now it’s on to 2017 and as I sit here typing this blog my heart is full.

I am in Sayulita Mexico (which seems impossible- or maybe I need to change that to I’m-possible?)

with my three favorite people and a really incredible family we met a few years ago while traveling (another added bonus of seeing the world)

We were invited to stay in a house that I have always wanted to stay in (I actually followed the blog the family wrote while building this home) and I am ready (so fucking ready) to let go of 2016.

Although I should note it wasn’t all bad.

I learned.

I learned, that life might not always easy but it’s up to you to make it worth it.

I learned, that struggle is universal and to be open to possibility.

I learned to live a life in ‘search of’ instead of ‘according to’.

I learned, it actually is a small world and we are all connected.

I learned I have friends all over this small world who love me and are endlessly rooting for my family.

I learned to let go and not react. Truth is different for each of us. I learned to face my own.

I learned the difference between empathy and compassion.

I learned how to be part of a tribe. (Apparently I am the grandma 😉)

I relearned and refreshed my momcologist skills and I learned how to move the goal post and raise the bar.

And most of all I learned…

Life can still be amazing and beautiful and full of potential even if it is a total cluster fuck.

And as it ends and I say good riddance to another year.

I thank you 2016 for every single lesson-now get the fuck outta here!

Much ❤️
J

You are doing a f**king GREAT job

I have to remind myself every single day that I am doing the best I can.

There is no manual to having a child with cancer (except the terrifying binder they hand you in the hospital on day one) and there certainly are not any instructions on how to do any of this AT HOME every day, let alone do it properly.

We have been home for 13 days now, and every single person I know asks me the same question.

“Are you happy to be home?”

My reply is always the same, “This is not our first rodeo.”

People pause.

It gives them something to think about.

I just smile.

Sometimes there isn’t always a yes or no answer.

Of course, being in the hospital for an extended period of time is very stressful. It is uncomfortable. There is a lack of privacy and constant disruption. All of which is hard, but it is the worry of your child being ill enough to be admitted under some one else’s care that is most unsettling.

This constant anxiety and feelings of helplessness somehow leave only gratitude for the doctors and nurses. This perspective makes being at the hospital less awful.

Now, think about what it must feel like leaving the hospital with the same level of stress and fear, knowing just below the surface your child is still very sick (but out of immediate danger) and bringing them home where they will be entirely in YOUR care.

Honestly, it is scary as hell.

Being a nurse twenty-four hours a day is unbelievably exhausting but having no one to ask questions to or follow up with is the most terrifying.

There is no call bell at home.

No breaks.

You can’t just run to Starbucks and get a coffee while the child-life therapist comes to visit and there are no doctors on the ward catching up on paperwork to just run ‘something’ by.

Cardiology, oncology, physiotherapy, and dieticians, are not just a page away and you can’t jet downstairs to dump on your nurse clinician just because you are having a bad day (poor Naomi I am getting her the best Christmas gift).

Nope.

Once you leave the hospital and come home all the management and responsibilities of the disease and the care rest on your shoulders.

You are the ONLY person your child has to count on. The constant pressure is #ALOT.

I’m not going to lie or try to be brave or play it down. It is a shitload to manage and the Jayrod and I have screwed up a more than a few times already.

It has been a huge learning curve.

You’d think by our fourth go round, we’d have our shit together.

Nope.

In fact, we’ve both recognized part of our ability to cope for so many years has been because we’ve blocked out memories and erased skills from previous relapses.

As a team we have had to re-educate ourselves on almost everything cancer related.

We are both frustrated. There has been some yelling (mostly me) some name calling (sorry to throw you under the bus Jay) and more tears than I’d like to admit.

There is no way to sugar coat it…..It is all so bloody difficult.

The medication/feed schedule during the day is every 2 hours.

The first week home, Jared and I were running on about two and a half hours of sleep a night. We didn’t have the proper feed pump, bags or supplies and we had no other option but to wait for one to be ordered and delivered to the house.

It took about a week to arrive and no one was getting any rest.

Anyone who has had a baby will understand, lack of sleep makes you crazy.

Also, because of Logan’s difficulty with swallowing, most of her medications have been switched from pills to liquid. Checking the PH in her stomach, flushing her line and measuring syringes every two hours (while feeling like a zombie) can leave a fairly large margin for error, apparently.

BUT it doesn’t seem to matter…

Despite zero sleep and rusty nursing skills we have been assured just as the card says, that we were doing a fucking GREAT job…..

The reality is, WE aren’t so sure.

So far, we’ve had 2 feed bags explode ‘batter like’ substance (feed) everywhere, we’ve re-ordered and forgot to pick up prescriptions twice, oh and we’ve accidently overdosed Loggie on blood pressure medication for 4 solid days.

UGH.

Not exactly sure how it happened (maybe it was two hours of sleep a night) but it was during the early morning routine when the bottle of meds was suddenly empty that I knew something was wrong.

“SHIT!!!!…..JAYROD!!!!” I shrieked at the top of my voice.

He came running.

“How many ml’s of BP meds have you been giving her every morning?” his face went white.

“Fifteen” he said, “Just like you wrote down.” I watched in horror as he pointed to the hand written instructions I left out for him.

“Did you even think to cross-reference what I wrote down to what the instructions are on the bottle?” I asked irritated (mostly at myself).

We both looked at the empty bottle in fear, there was no point in the blame game, any way you look at it, it was an epic fail on both parts.

I called the hospital.

The scary cardiologist (who isn’t so scary anymore) assured us not to worry. He told us she’d likely pee out all of the excess meds and if she hadn’t already had a seizure we were probably in the clear.

Fuck.

He also suggested having her kidney function checked before we started chemo this week but assured us it was ok. Social services would not be coming to our door and he told us we didn’t need to feel so terrible.

Apparently we aren’t the first parents to overdose our kid.

I am sharing this incase you think you are doing a shitty job.

Trust me, it could be worse.

You too, are doing a fucking GREAT job.

Roll with it.

None of us are perfect and as parents, sometimes, we put impossible expectations on ourselves when there is no need for it.

Let it go, you are only human, you will screw up and the tough days will pass.

To be honest, the JayRod and I, as parents, are just barely keeping it together.

This whole 4^th time at cancer is devastating and we are feeling defeated.

The dust has settled and the reality and magnitude of what we are facing has hit us like a ton of bricks. Most days my stomach feels like it is in my throat.

We’ve moved on from disbelief to shock. Most of the time the shock just leaves us paralyzed.

I see Jared walking around in circles. Usually, he’s an efficient guy but putting up the Christmas lights took him two weeks. I am spending most days staring blankly at the wall, endless thoughts are only interrupted by the sound of my IPhone alarm that ironically plays a song starting with the words “It’s a long road…..” (remind me to change that)

We are both feeling lost, scared, angry and tired. The problem is, it is not necessarily at the same time, which makes holding each other up pretty hard to do.

Our life is no longer our own and it is devastating but what we can’t come to terms with is what the future may bring. Time, in theory, should be precious but when every day is so hard to get through, how do you actually enjoy it?

See, I told you, the answer is long.

Yes being at home is great, but it also feels foreign.

It is no longer a place to just relax and unwind after a long day. It is now the place where we spend the long days.

We worry about the stairs, the shower and the tiny ensuite bathroom being to hot for Loggie’s blood pressure. Trying to maneuver the IV pole over the carpet upstairs is a hassle. We constantly listen for the beeping of the feed pump, the alarms on our phones to go off indicating it is time for another bolus, and every movement Logan makes triggers the baby monitor.

Yes, it is nice to drink a glass of wine out of an actual wine glass and shower in my own bathroom without wearing flip flops but even that is not as good as I expected.

Nothing seems to be as relaxing or as wonderful as I remember it being just a few months ago.

Funny how moving ‘the bar’ gives perspective.

Everything has changed.

I am on edge. Jared is on edge, Logan is so tired yet trying so hard to be strong for all of us, and Brody seems to be begging us to keep it together.

To top it all off, it is Christmas! Ugh.

The time of the year when it is customary to rejoice, reflect, plan ahead and be grateful for what you have. It could not have come at a worse time.

I am desperately trying to get into the spirit.

I have my tree up. The house looks beautiful, I’ve done some online shopping and I’ve vowed as Clarke Griswald to make this “The hap, hap, happiest Christmas since Bing Crosby tap danced with Danny fucking Kaye. So when Santa squeezes his fat white ass down OUR chimney, he’s going to find the jolliest bunch of assholes this side of the nuthouse.”

But so far the only thing that is entirely possible IS this side of the nuthouse.

Thank god for friends and family. Thank god for people who bring food and show up without asking.

Thank god for friends who throw amazing and supportive fundraisers just because they want to help and thank god for perfect strangers who show up to those fundraisers just to give you a hug (and a few bucks😘).

This yo-yo of emotion is so overwhelming. Receiving so much love and encouragement and support is beyond anything our family would have ever expected. We are in complete awe of how much goodness and kindness and selflessness so many of you have. We can’t even begin to say thank you because our words could never begin to reflect the gratitude we have in our hearts.

This part….

The awesome…

Come together…

How can I help?

I am here for you…..

You’ve got this…..

I’ve never met you but I love you part is what makes all the shittyness, bearable.

It is why we have the will to continue on. It is why we don’t want to give up or feel sorry for ourselves and it is also what makes us so incredibly proud of our Loggie-Bear, and her ability to connect so many people with her beauty, strength, and grace despite having to face so many difficult circumstances.

Time and time again.

We know there is something so much bigger than just cancer going on here.

I learned in India that struggle is universal and it is what connects us all.

I believe that.

It is not success, or wealth, or beliefs, or even experiences that connects us.

It is struggle.

We all know what it feels like to struggle and we all know what it feels like to need love and support.

Thank you so much for your compassion.

The gifts you have given us have forever changed the way we see the world and we promise to always do our best to be the kind of people you have show us you all are.

On that note, we trudge forward.

Today is our first full day of chemo at home.

We’ve never done chemo at home and are a little nervous about handling it ourselves.

There is something weird, awesome, and terrifying about holding a drug in your hand and administering it directly to your child with all the hope you have in your heart.

Basically, you don’t want to fuck it up.

So far…we’ve messed up once.

In less than 24 hours we’ve already made one trip to the ER.

GOLD STAR FOR THE LAY’S!?!😩

This round will continue until mid January. There will be 17 doses this weekend with a couple more doses through the holiday season. After it is over we will have another MRI to check for progress, and hopefully shrinkage.

On a good note, we think some things are improving for Logan. Her blood pressure is stabilizing and she is more alert and awake during the day.

She has had a few setbacks but we aren’t dwelling on them. She failed a breathing study and we will need to do further testing in the new year to find out exactly why. The answer is probably related to the tumour so it’s a good thing she’s getting another round of chemo now.

Yes, we also did meet with a new surgeon. Yes, he is super rad.

He offered some hope. Not in a “I can fix all of this kind of way” but he did say that maybe he could attempt to get a biopsy so we could participate in a new cutting edge study and he did mention that while he was in there if he could work any magic with his laser he’d try and give that a go as well.

We left happy.

Surgery is not something we will take lightly, it would be a huge decision to make but we are comfortable knowing that if it comes down to not having any other option, we have a rock star surgeon in our back pocket.

And so it goes….

Our life continues to be all over the map. Right now our GPS is set with a direct route back and forth to the hospital. Every day our route has ups and downs, there is so much to be sad about yet so many things to be grateful for too.

Christmas is here and this year is almost over.(Thank God)

We aren’t exactly where we thought we’d be (Thailand on a beach 😉) but somehow we know we are exactly where we are supposed to be.

We are all together, we are surrounded by tons of love and support and we truly ARE doing a fucking GREAT job…..

RIGHT?

Balancing fear and hope

In the past ten days the entire world has been completely flipped upside down, including ours.

Trump was elected president and with that my entire theory on hope was thrown out the window.

Yes, the unimaginable can happen.

I guess if any one should know, after all these years of childhood cancer, I should.

How could I be so naive to think hope and humanity would actually prevail?

Why do I even believe in the possibility to overcome unacceptable situations?

Clearly I should know by now, sometimes they just can’t be overcome.

I have always preached “The only thing stronger than fear is hope.”

This week I have learned it is pretty easy to preach those words when the past 11 years we’ve always been lucky enough to find a way through our most difficult times.

Logan, so far, has beat every odd and we’ve skirted our way through devastation, (and around the world) so many times I think I convinced myself that hope was really enough.

The past few months, however, my faith in this statement has been tested to the brink.

Every day feels like an absolute blow. Logan’s blood pressure hasn’t consistently improved and despite all of our attempts to manage her symptoms we reached the end of our rope.

There is no more medication that will help her right now.

I’ve heard words like “There is nothing more we can do, there are no right answers, I don’t know what to tell you, and I wish I could give you better news”

I’ve sat down with teams of specialists and BC Children’s Hospital’s top doctors, to pick their brains with all the questions I have stored in my mind.

No one knows what to say.

We’ve never been here before.

There are no answers.

It breaks my heart to think of every roadblock Logan has faced and what could happen.

It seems so impossible to be here, again.

And, although, I can’t accept where we are at, by the same token, it is all that I can do is accept where we are at and move forward.

And hope.

Which feels like such bullshit.

But this is our reality and fear seems to be winning these days.

I try not to think about the odds, or the statistics. I cling to the fact that Logan’s success rate for overcoming cancer so far has been 100%.

I am desperately trying to be grateful for what I have. I have faith in all of our doctors, and all the prayers coming our way, really I do….

But

Nothing seems to be enough. I am just so fucking scared.

All.The.Time.

Today is Day 27 in this bloody hospital (day 36 in the past 8 weeks).

I now know all the nurses by name and what rotation they are on. It is no longer a secret I am drinking wine in a hydro flask and the beeping of her IV/ feed pump have become the rhythm to the sound track of our day.

I have remembered how to navigate a feeding tube and can bolus liquid in like a champ.

The shock of relapse is fading and my brain fog is lifting, it is replaced with anxiety, sadness and disbelief. This can’t be happening.

I can recite the names of her new medication and am starting to remember the scheduled times we need administer all the drugs. Part of me feels confident getting back into the swing of my role as a momcologist.

“You’ve done this before.” I chant to myself before bed each night.

But the other part of me is just terrified.

“This is so f*cked up, how am I going to do all of this?” I find myself saying each morning after another sleepless night.

Despite some small victories and improvements the mountain of setbacks we’ve faced since being re-diagnosed is overwhelming.

There are new symptoms we have never had to face before and the unknown is what worries me the most.

I fear it all.

But, by far, waiting is the hardest part.

My job is to keep Logan safe and comfortable and hope like hell the chemo is doing its job by shrinking the tumour without causing permanent damage to her brainstem.

For now she will need to use a wheelchair most the time now. She can’t stand or walk for long periods of time. She has fallen and fainted and with low platelets and a brain tumour, we just can’t take the risk of her hitting her head.

She is weak, and tires so easily. The smallest of task is monumental for her.

It has been difficult to keep her nausea under control, her appetite up and her headaches on a pain scale below 5.

But it is the damn blood pressure that continues to be her biggest challenge. It is now randomly bottoming out and over the weeks we’ve seen the ‘drops’ intensify, leaving her confused and disorientated.

A couple of nights ago proved to be one of the hardest moments I’ve ever experienced as a mother.

Logan didn’t know who I was.

The cardiologist explained that her blood pressure likely dropped so low, there wasn’t enough oxygen for her brain to work properly. Her mind couldn’t process what was happening around her.

She didn’t even remember me.

And as she asked me numerous times what my name was, all I could do was cry.

Fear won.

In that moment it won and took over every ounce of my being and sadly in more moments than I’d like to admit to anyone, fear has been winning.

I am trying so hard to be strong and stoic but I am tired. I am physically tired from the last few months and emotionally exhausted from the last 11 years, so is Jared and Brody, and so is our, sweet Loggie.

It is not a good place to be when we have such an enormous mountain ahead of us to climb. We are trying our best to take the time we need to find our strength. It is not always easy. Everyone has needs. The treatment plan is daunting and road to recovery is going to be long and hard on us all.

There is a plan moving forward and it is in motion. We are going to try to transition back to our home, back to normal (whatever that is?) and back to living the best life we can, together despite our new realities. Family time, and quality time together will be our priority now. It will be our biggest challenge to date.

As any parent would, all Jared and I want is for everything to be better right away and that just isn’t possible.

It feels like torture to have patience, to wait and to cling to hope.

It is hard to believe just three short months ago we were planning a family trek around Asia and today we are plotting out home care nurse schedules, insurance coverage, feeding regimens and chemo days.

It is humbling to think how quickly life can change, and trust me, it never gets easier to comprehend.

We were also referred to Canuck Place this week and had our orientation meeting. Another blow.

For those of you who don’t know what Canuck Place is, it is a hospice.

But that isn’t how they sold it to us.

I was assured, hugged and then reassured that it was much more than just a place to take your child to die.

I was told it was a beautiful mansion full of love, respite and people to support us in every way possible as we care for Logan through this difficult time.

They tried to sell us on the laundry service, free massages, daily meal programs and family suites.

We didn’t completely bite.

We did, however, put our name on the list. We enrolled in the program and then left it up in the air.

We know the help is there if we need it but psychologically we can’t quite make the leap, just yet.

Free massage or not, our plan for now is to take Logan home, get through her chemo treatments, be together and wait for her to improve.

We are in the process of getting all our ducks in order to make that happen. It is a process that includes applying for grants, (universal healthcare my ass) getting an adjustable bed, a wheel chair rental, two IV poles, a minor bathroom renovation, a feed pump, syringes, nutrition, and all our new medication and schedules. Once that is set in stone we will be good to go.

In the meantime, we are spending the days going back and forth between home and hospital as part of our transition (or in other words a heck of a lot of driving and lifting of the wheelchair leaving both mom and Loggie wiped)

Occupational therapy is sending someone next week to assess our house for any safety concerns, (I am hiding the cases of wine you’ve sent) and we are going to have a home care nursing team come by to check out our skills and give us the green light on our techniques.

I’ve been assured we will NOT be alone in this (insert sarcasm) although it feels very much like we are about to be.

Hopefully, all the logistics will be sorted by Monday and although we may not have all the equipment by then, we will go home soon after. Ideally, we would love a couple days alone to get our routine down pat before her next dose of chemo on Wednesday.

The days following chemo aren’t proving to be great, and there is some concern around the further effects of the therapy on her autonomic system.

But we aren’t going there.

This chemo has to work. Period.

There is no other option.

We’ve moved the goal post about as far as we can and now we have to wait.

For chemo to work

For Logan to get better

For our family to heal

Leaving the hospital is going to be terrifying in itself. Being in charge, knowing so much is out of your hands, yet rests on your shoulder is a burden I can’t find the words to explain.

When all you can do is hope while constantly battling off fear you realize sometimes being in the moment, actually, just really sucks.

Imagine

It is all coming back to me now, this world of childhood cancer.

It feels sadly familiar and it hasn’t taken long to get back into the groove of things. Medication schedules, doctor’s rounds, nurses coming and going, and the never-ending sounds of machines are becoming the norm.

Time of day is now measured by what pills are about to be administered, when vitals need to be done and shift change. Right now, the most exciting part of our day is finding out who our nurse is going to be (and if we already know them).

Returning to this world was hard.

Surreal.

I immediately realized that I had blocked out so much about the time we spent here. I mean, I never completely forget, but I did move on, and in some ways put so much of this behind me.

I didn’t dwell on the process.
I left here after Logan’s last chemo (round 3) desperate for a fresh start.

It wasn’t entirely what we got, but we rolled with it. We had no choice.

Logan’s health problems continued post radiation and we spent more time in clinic than we wanted to, but somehow, we did make the most of life and we really did embrace our new found freedom.

We had so much of it, we didn’t even realize.

Freedom from the worry about blood counts, and clogged NG tubes, and chemotherapy regimens and delays. Freedom from long-term hospital stays, excruciating wait times, and outrageous parking charges. There was less anguish about needles and hair loss and no concern when a sudden fever popped up.

In five years we never panicked that maybe Logan needed blood.

Life, for us, slowly became normal (insert sarcasm) and we did our best to embrace the word ‘stable’ for all that it was.

We had time.

Time to forget which was nice, because, for the most part what happens is you forget all of the bad stuff first.

It is like washing your hands from the most intimate and scary parts of cancer once you are done treatment. You never really walk away but you do breathe a small sigh of relief.

Time is a gift.

It teases you, it taunts you, and in the end it is so very elusive.

Time, despite being gracious, doesn’t change what you’ve been through and it certainly doesn’t heal all the wounds, but what it does is give you space to process, the space to move forward and space to open up to the possibility of hope.

Hope is powerful.

From Day One I have said “Hope is the only thing more powerful than fear.”

It is why I am pretty sure Trump isn’t going to win the American election tomorrow (put that on record) and it is also pretty much the only reason any of us have the strength to battle through round four of chemotherapy and hopefully beat this cancer once and for all.

Hope inspires.

It rallies.

And what I have realized this past couple of weeks is that although I might have be lucky enough forget the really shitty parts of cancer quickly, sadly as I walked away, I also forget the really amazing parts about it too.

Cancer is a journey.

Logan hates when I call it that.

To be honest, for some reason I hate it too and I’m not sure why.
Maybe because the word ‘journey’ makes it all feel too long, maybe because it plays down the magnitude of what we face, or maybe it is because the word is so over used, it gets on my nerves. But, despite all attempts to abolish the word, I always come back to it. It is a journey.

A lingering one, with ups and downs, misguided expectations, roundabouts and a heck of a lot of awesome sights to take in along the way.

I forgot.

I forgot all about the scenery on this journey. I forgot about the beautiful things that unfold during such agonizing times, and I forgot how when we stop, pause, and allow ourselves to take it all in, our perspective around how shitty the situation is, changes.

It is not all bad. It is not all terrible and not every moment is living the worst.

There is hope.

In the past two weeks since Logan’s treatment has started I have received hundreds of emails, messages and texts. I have had thousands of people read the blog, share Logan’s story and root for us- AGAIN!!! I have been blown away by how much she is loved, and how many people truly believe in her strength

I have had oncology families from years past show up with food and gifts and wine (plenty of wine and screw tops). I have seen groups band together and instead of asking what they could do, just doing. Friends from previous lives have not hesitated to reach out. We have eaten plenty of vegetables and less lasagnas (you did listen) and again I am humbled by the outpour of love and support.

There have been small moments of self-awareness, (holy shitballs!!! therapy might just work!) and pausing to reflect on the good. All of it is making this ‘journey’ very different the fourth time around.

I am keeping a lot of my ‘F’ words on the inside and instead of shouting them in everyone’s direction, I am actually using the deep breathing techniques I have learned (thank you yoga).

I am happily and not so secretly drinking a tiny bit of wine out of my hydro flask each evening while tucked in bed beside my girl and even though this whole situation is shit, Logan is in good hands and I take peace in that.

I have not made a whole new slew of oncology parent friends.

I am not as social this time around and am more cautious about jumping on board anyone else’s rollercoaster yet I feel far more aware and sensitive to what is going on around me.

There are so many families struggling through this, just as I am, on the other side of the wall.

I was beyond sad to hear that Michael Buble’s son was diagnosed this week. It hit home how cancer never discriminates but also shed so much light on the reality of how hard it is for families who don’t have anything or anyone to help get them through these hard times.

As is Michael Buble, we are so lucky.

I feel so much more compassion this time around.

I am less consumed by our own misfortune and more aware of the struggle so many are facing along side of us. It has amplified an understanding. Truly, we are all more the same than we are different.
It doesn’t matter if you are a mega celebrity or a single dad who is eating the donated food each night on this ward.

We are all connected.

By the way, there is a food fairy.

I am not kidding. Every weekday night on the ward, some random lady drops off dinner for the families staying while their kids getting treatment.

Every. Single. Weekday night. This. Kindness. Really. Happens!

No one seems to know exactly who it is that brings dinner in but at 5’oclock, like clockwork, there is a hot meal on the table in the parent kitchen.

Imagine.

Then, try imagine a doctor who despite being over worked (they are always short staffed) stays until 8pm to have a comforting conversation with you because she knows you’ve had a tough day with a inconsiderate cardiologist.

Imagine yet another amazing doctor pushing and encouraging you to take your critically ill daughter to watch her brother play lacrosse, simply because he believes that life, despite cancer, is still supposed to be about doing things that make you happy.

Imagine Carebear onsies, and late night family snuggles. Imagine camp friends and fun games. Imagine seeing a twelve year old boy tell his 19 year old sister how proud he is of her. Imagine free tickets to ‘We Day’ where you got to witness a young lady using her only ‘wish’ as a platform tell the world not to give up, that life is still worth trying to salvage even when someone tells you, you are going to die.

Imagine, having good things flood in faster than bad things. Imagine feeling supported and loved from the minute that you wake up until the minute you fall asleep. Imagine having to manage a schedule of visitors because so many people just want to swing by and give you a hug. Imagine days off without having to make big plans but instead celebrating small moments.

Imagine wheel chair races down vacant hallways, fresh laundry, late night chats with besties, and gourmet take out. Imagine inappropriate but hilarious movies, new pj’s and free Starbucks. Imagine not having to be anywhere or even wishing you were somewhere else.

Imagine, acceptance.

Finding out Logan’s cancer was back, sucks balls, don’t get me wrong.

But if I continue to focus on every set back, every chemo treatment, or MRI, every time she collapses, all the terrible blood pressure reads, people’s drama, new symptoms or the mountain of obstacles we have ahead of us I am going to put myself in the loonie bin before Christmas.

I just can’t.

So, instead I am going to take a cue from Logan and try to roll with all of this, with as much grace and dignity as she does.
I am going to do my best to forget the bad days but not so much the good moments and I am going to try to be aware of how lucky we really are.

I know its not going to be easy, and I promise I am going to stay real and not go all Polly-Anna on you while I write these blogs but for ‘F’ sakes….. some thing around here has to B+ and not just the packed red blood cells on transfusion day.

Time to regroup

If I had a dollar for every time someone said “Remember, you have to take care of yourself too”

I’d be a millionaire.

Everyone has good intentions but to tell you the truth, there is no taking care of yourself at a time like this. I can’t even comprehend what my needs are, let alone act on them.

Taking a break, in theory, seems like a good idea but leaving Logan’s side at a time like this feels completely foreign to me.

There is no shutting my mind off or doing ‘normal’ things.

There is no regrouping.

At least not in the beginning stages of this.

I know.

It is the fourth time.

The days following a relapse, learning your child has cancer again, and finding out you have to start a marathon of treatment from the beginning is all about surviving.

There are no luxuries. Everything becomes about basic needs.

Living no longer happens and functioning kicks in.

Conversation is hard to absorb. People talk but It’s impossible to absorb and stay engaged because your mind never stops racing with fear. You have so many thoughts and questions filed away and you feel desperate to remember all of them.

Friends come and go, people you forgot about reach out.

So many doctors swing by.

Suddenly you are living in a fish bowl.

The days seem to fly by but the hours and minutes just tick away and before you know it, it’s been a week since you were unknowingly admitted.
A week since chemo was actually started and you wondered, is this was REALLY happening again??? (WTF?)

It’s a week later and it finally hits you. Life has been flipped upside down and it is going to be a long time before it is your own again.

My only saving grace is knowing first and foremost I am a mother.

Regardless of the fact I feel completely lost in my own skin right now, nothing feels more natural or more important to me than being exactly where I am.

Beside my child.

It is because of this, all I truly want to do in these sacred, fragile, broken, quiet moments is WHATEVER Logan needs or wants of me.

Caring for her IS what makes me feel better.
Despite my tired eyes, ratty clothes, and fake smile being here with her feels very much like taking care of myself.
I want to take care of my family and the only thing I want to do right now is to be a mom.

Happy Halloween. Grumpy about cancer.

Both Jared and I, as parents, decided long ago that the requirements of our kids would ALWAYS come long before our own.

We don’t take much time together, just the two of us.
We don’t spend much money on ourselves and we don’t dwell on the fact of what could have been instead of what is.

We don’t want to.

Many good things have come from this tragedy and we know if cancer didn’t strike our family we might have never had the same amazing experiences or the same amazing people.

We don’t like all that goes along with this, but we own it.

We love being together, we like who our kids have become and we appreciate the time we have together.

Our family has lived on the edge of a very steep cliff for many years.

We ‘get’ that Logan’s life is at stake and how easy it would be to fall over, lose our footing and crumble to the valley floor.

We also know none of this is in our control.

All we can do is what feels right for us, today, and every day, and being here with Logan around the clock is what feels very right.

In hindsight (BTW it is always 20/20) quitting my job and giving up my career was also right.
I’ve been able to be exactly where I’ve needed to be. I have less money in the bank and a bit more stress but I’ve also had a lot more time to be with my kids and I have no regrets.

I take peace in that.

I know Logan does too.

She never questions if I will be there for her or how much she is loved. She knows that come hell or high water there is no place else on earth Jared, Brody or I would ever be than be than here with her.

And that is true.

Nothing else matters.

Not now.

Now is about survival.

Now is crisis time and we are in the thick
of it.

We were admitted a week ago and since then each day has gotten harder and Logan has consistently gotten a little bit worse.

She had surgery, started NG feeds, had 14 doses of chemo, all of which are probably contributing to her continued overall decline.

Her electrolytes dropped and needed to be replaced this weekend. Her nausea got worse. She has had diarrhea, headaches and pain. Swallowing is getting harder, she has lost 5 lbs in a week and she has zero energy to engage, visit, text, snapchat or email.
She has been sleeping more than 20 hours a day and her blood pressure is more unstable at unusual times of the day.

Last night was a shocking 51/29

It’s been a bit of a mess to figure out.

Our minds are spinning and although we have an amazing team of doctors working around the clock to help her feel better we aren’t even close to where we need to be.

Logan desperately wants to go home.

Feeling up to a little watercolour

But we have no idea if it will be possible anytime soon. We all hope so.
She’s sad and has cried every day about being in the hospital again. She doesn’t say much but I know she’s devastated about the entire situation.
We all are.

I feel deep compassion for her heartache and I too am sad, but to be honest I am also relieved to stay in this hospital a bit longer.
I am scared and nervous about being in charge and looking at her, the way things currently are, I know I am not ready to manage all of this, at home, on my own.

It is very stressful and I am still trying to wrap my head around all of it (pardon the pun).

At least, here, in the hospital, we feel safe.

So, yet another new plan.

The ‘plans’ seem to be changing hourly these days. It’s how cancer works, you have to learn to roll with it.

Instead of rushing her to feel better, pushing her everyday to do more, to eat more, to drink more and to be awake more often, we are going to pull back.

Give her body some more time and space to process.

We are going to slow down the NG feeds and give her more fluids through her IV. We are going to try new doses of her blood pressure meds and give them at different times and we are going to keep ahead of the nausea and vomiting by giving her medications through her IV and her NG tube instead of forcing her to swallow them.

We are also going to let her sleep as much as she needs and work with physio to slowly get her up and moving again. We are going to have occupational therapy reassess her and we are going to introduce fluids and food by mouth again only if it is safe and she when feels up to it.

This plan may seem monotonous but it is a good plan. It will also allow her to rest while the chemotherapy eases into her system and does its job.
A few days from now her counts will be dropping. She may need blood or platelets. In just over a week she will be due for her next dose of chemo again.

It seems like everything is at a stand still but also moving forward. It feels overwhelming but also okay.

Logan needs this time to heal.

It’s about taking care of her and allowing her the space to regroup.
We are on board with the plan and are committed to being here with her.

Around the clock.

As long as it takes.

Thank you to all of you who are helping by sending your love, your words, clean pyjamas, onsies, and so much yummy food (and wine🍷😉). Our hearts and bellies are full. It is so very nice not to have to worry about cooking and to know how much you all care about us.

A special shout out to my soul sister Kitty, who without asking showed up at the hospital at 10:30pm on Saturday night with a roll of quarters and a can of beer. #superrad

I called her crying and absolutely falling apart. I could barely breathe.

It is bound to happen.

Post meltdown. Not one of my better moment. No pride.

Logan had been very sick that night and it ended up all over her clothing. Everything in the hospital was closed. I had only loonies but I needed quarters to do the laundry.
Being the resourceful gal I am, I begged outside of the emergency room entrance for about 20 mins in the pouring rain after a faulty vending machine left me with almost no money.
Feeling broken, I took my humiliated, defeated, and tired self to have a ‘break down’ in the 3R playroom.

I didn’t want Logan to hear me cry.

At some point I face-timed Kitty.

I never asked her to come, but she did anyway and it was exactly what I needed in the moment.

A friend.

Friends are one of the many blessings that surface during these hard times.

It is what we are most grateful for and we thankful to all of you for being such good ones to us.

We couldn’t ask for more….

Well…..except for maybe a nurse that encourages me to sneak out to my car for the odd glass of wine (Thanks Naomi) 😉😉

And bottles with screw tops and not cork screws…. (hint hint)

And cheaper parking,

And a full bathroom,

And bigger parent showers,

And….(you get the point)

Wine in a Starbucks cup (it’s what we do) Hopefully I’m not going to get booted out of here. 😉

Yep, we really are easing right back into the swing of things here on the paediatric oncology ward. Its just like old times, only we are much older while the nurses are so much younger….

Luckily, we know the ropes, and we know this is only one shitty week down, with many more uncertain times (and hopefully a few grand adventures ) to come.

After all, it is a life all over the map…..right?😘

Round 4- No words

I don’t even know how to start this update.
Usually I have words bottled up inside waiting to be shared but these days there aren’t many words.

I feel numb.
I feel lost.
I feel empty and heartbroken.

My thoughts feel so jumbled and unstructured.
My mind won’t shut off but nothing makes sense.
Trying to Process, considering, contemplating, and deliberating. My mind is racing and then just like that it is completely blank.

Anxiety is hovering.
It’s everywhere.
Words are at the tip of my tongue and then they are gone.

There is so much I want to ask but my questions can’t be answered.

Why is this happening again?

Why does Logan have to suffer so much?

Why can’t this be happening to me instead of her?

How will I find the strength to be strong enough for her and for myself?

Will there be enough love and patience to get my family through this one more time?

How come I was not more grateful, more in the moment and more happy about how good things were?

How much time do we have left together?

I feel disengaged, and removed and not myself. I can’t believe that anything ‘normal’ can be happening in the world right now. I can’t contemplate how life just goes on, or moments can continue because all I feel is my family’s world completely crashing down.

Years ago, when Logan was diagnosed for the first time, I felt the same way.

It feels like this is all one big lie, a terrible mistake or a bad dream.

It is almost impossible to accept this as our truth.

Only this isn’t a lie.

It is cancer.

For the fourth time.

And even though it doesn’t feel possible that this could be happening again, I know how real it is because I watched as the nurses ‘gloved up’ and Logan took her first dose of chemotherapy.

I cried as they pushed it though her tube.

This journey we are about to embark on once again feels so daunting and inconceivable.

It’s going to be a long haul.

It’s not going to be easy.
Logan is not starting out in a good place. She is not as well or as strong as we would want her to be. Her bone marrow is damaged from all the previous therapy. She has so many issues related to radiation.
We haven’t had surgery to relieve any pressure, no time to get her body ready to take treatment, and not one moment to emotionally prepare for any of this.

It came out of no where and Logan has declined quickly and unexpectedly over the last two months. This past week has been exceptionally tough.

We had a meeting with our oncologist while she was in surgery Tuesday morning and yet another new treatment plan was established.

We decided on a different chemotherapy regimen than we originally discussed.

Apparently this protocol has better overall results for tumour shrinkage. About 50% of patients saw shrinkage on this study versus just the disease stabilizing which Temodar would likely provide.

As a team we decided we need more than to just stop this thing from growing. In order for Logan to feel better, we need it to regress.

There will be four drugs in total administered over a 6 week cycle. There will be 8/10 cycles in total depending on what she can tolerate.

Over the first three days (78 hours) she will take three of the chemo drugs every six hours. She cannot eat or drink anything for three hours between each dose. Then at day 14 and day 28 she will receive the fourth drug.
She will have blood and platelets given as needed. The cycles will take as long as her bone marrow needs to recovery. Ideally we hope she won’t be too delayed. Staying on track with the regimen will be key to the overall success of this protocol.

If all goes well, she tolerate the drugs ok, and the tumour responds, this chemo this will go on for about a year and a half. If anything fails, and it isn’t working or she isn’t tolerating it, we have the Temodar to fall back on. There are also a few other phase 1 trial options but we don’t want to go there just yet.

There will be MRI’s to check for progress which will be preformed every 3 months at minimum.

Dr. Hukin ordered an emergency MRI and angiogram which we had yesterday so now we will have a better handle on if and how much this tumour has progressed in the past couple months and we will also have a proper baseline to start this new chemotherapy.

Happily things don’t look much worse in the past 6 weeks and she isn’t having strokes. Although these results are arbitrary, because really, we know where are at.

Logan’s symptoms are getting worse but we have to celebrate every win and the MRI has given us some hope that we have time to continue to work on getting things under control.

She isn’t eating much and trying to get the three litres of fluids a day into her seems impossible.
She is losing weight, slurring her speech, she is having trouble with her vision, her hands are shaky. She is weak, unbalanced and her blood pressure remains unstable.

They decided to admit us to hospital on Tuesday to help support her through this first round of chemo. We weren’t expecting to be admitted and we aren’t sure how long we will have to stay here but we think it’s a good plan to have a team of nurses and doctors working on her.
Honestly, it was becoming too much to manage everything at home.

She also had a feeding tube inserted this week.

It was unexpected but it was also the right thing to do.
Logan understands why she needs it but is also completely devastated about having to wear it.
She has lost about 17lbs since summer and because her appetite is only going to get worse on chemo our oncologist made the executive decision to have it inserted along with her port during surgery.

The little yellow nose hose also completely breaks my heart.

She is 19.
She doesn’t want to fed through a tube.
She wants independence and freedom.
She cares about how she looks and just wants to be as normal as possible. She wants to make her own choices and this line hanging off her face is just one more visual reminder of how much is being taken away from her, how sick she really is, and how living with this disease traps her.

She’s embarrassed for her friends to see it and it makes me sad.
She doesn’t want to be stared at or seen as any different. Cancer is hard enough to deal with but having a tube run out of your nose is just a magnet for pity.

No one wants pity.

I know that her real friends won’t be phased. In fact, I think they will see her (as we do) as even more beautiful, brave and strong but she also doesn’t care about that.

She is tired of being measured by how much pain she can endure.
For her, it is far more simple.

It is ugly and she hates it.

She hates it because it bothers the back of her throat when she swallows. She hates it because she hasn’t been able to eat enough to avoid getting one and that makes her feel like a failure.
She hates it because they have pasted a giant sticker on her face and she won’t be able to wear proper make-up and she hates that even on her ‘good’ days she will be hooked up to a feed bag for about 10 hours a day.

This is all such a mess. I snapped at the dietician today. My temper is short.

Right now all of us are feeling very deflated, afraid, tired and overwhelmed. There are just so many new things to manage and to think about.

We’ve already run this marathon three times. We’ve crossed the finish line, or so we thought, and we’ve been out of training for a long time. We feel lost.

But I remember this course, all of it.

It’s hitting me like a ton of bricks and the magnitude of what is really happening is blind siding me with fear and panic. Walking these hallways, seeing the nurses, doctors, social workers and therapists is surreal. The smells, the sounds, making dinner in the patient kitchen, walking to the play room, sitting in the parents lounge, it all seems so unreal. I know where I am but it is almost like I just can’t believe we are living this all over again.

None of us can.

But, we will get there.

It will just take some time to processor it all, to let it all sink in. It will take a while for us to catch our stride again.

But we will.

And I thank you all for giving us the space and support to do so.

We know in time we will find our way through this again, we will find the right words to say, the strength to trudge forward and the will to survive and beat this F’ing cancer once again.

Much Love,

Life- All over the map

A family journey through childhood cancer and around the world