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?😘

Life- All over the map

A family journey through childhood cancer and around the world

Month: November 2016

Balancing fear and hope

Imagine

Time to regroup