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?😘