I saw a T shirt in the lobby of our hotel when we finally arrived in Bali. 

It read 

When I hear someone sigh ‘Life is hard’ I am always tempted to ask ‘Compared to what?’ 

I started to cry. 

After nearly 60 hours with no sleep, emotion hit me about as hard as the massive earthquake we just survived. 

6 earthquakes

2 evacuations

130 aftershocks

Endless hours with no power and only uncertainty. 

Seeing the faces of people who had just lost everything, their homes, their communities, their friends.

Watching as our hotel crumbled and glass shattered around us.

Buildings shattered, lives destroyed. 

Thinking of the clean up.

I could suddenly hear the sirens clear as day.  One direction filled with hope, supplies, helpers and possibility and the other a more solemn sound of loss, desperation, and need. It was the sound of those injured, fearful or the bodies of those making their way away from the devastation. 

The endless trucks of the heroes and first responders. 

People screaming and panicking. 

No power.

Only darkness as the ground below us continued to shake.

 I calmed the kids and held them tight but wondered how I could soothe them when I was shaking myself. 

“It is going to be OK, we are safe and we are together.” I looked to see Jared bandaging up a bleeding woman before he bolted back into our building (the worst hit) to grab Logan’s medication. 

I cried as I watched him hop over the broken structures and enter the villa. I had no choice but to let him go back in. Without medication, I knew this tragedy was going to get a lot worse for us. Logan couldn’t go the night without her meds. She also wasn’t going to be able to make it very long without fluids or feeds through her NG tube. 

“Please God, don’t let another quake hit.” I silently said as I watched him come out of the building and cross the elevated bridge from our room. 

Just then, the first aftershock struck. 

6.4 in magnitude, almost as strong as the first quake.

We were gathered by the front highway. There were about 50 of us. Frantic, panicked and in complete shock, we huddled together as though we were family. When the next big aftershock hit some people began to scramble. A few jumped into cars, others on scooters- Destination unknown, but anywhere out of immediate danger. 

Suddenly, my phone beeped.

I looked down. 

Tsunami warning. 

Most had left their phones in the room and hotel staff were running around unable to notify us just yet.

I gasped for air as I screamed.

“TSUNAMI WARNING!!!!” 

I could hear my voice shaking. I tried to read the details in the warnings and google the latest information. I tried to respond to the messages coming through my phone but my hands were shaking. 

I ran over to Jared and collapsed in his arms. 

“Oh, Jay what are we going to do?” 

My thoughts drifted to the disaster of 2004. The quake had hit off Indonesia and the Tsunami killed over 225,000 people. I remember the day clearly. It was Boxing Day and my brother’s girlfriend had family in Sri Lanka. I remember watching the news and crying, thinking about how awful it must have been to be stranded.

Now it was us. 

I looked at the hillside behind us, it was thick with jungle and straight up. Just as I pondered whether Logan would be able to scale the mountain Jared returned with some information. He had calculated the projected size of the waves, found the owner and knew how many feet we were above ground and how far away we were from the beach. He suggested we all move closer to the road and calmed the group. 

“We should be fine.” He assured us with such level-headed logic.

As we sat in the dark that night huddled on the ground with complete strangers, we heard the first sirens squeal past us and we all knew how bad it was about to get. 

The earth continued to shake beneath us and with each aftershock we all jumped and panicked. They wouldn’t stop. One hour after the big quake we had already felt 20, then 30, 40 and by mid morning we had felt more than 100. 

We spent most of the night outside with complete strangers but in the early hours of morning as staff found us a safe place to rest, we all knew each other’s names, where we had come from, and who we had left behind. We exchanged room numbers and without saying any words, we all knew, we were not alone. This newly formed crew could very well be the one we spent our final moments with, we were in this together.

We had no choice but look out for each other. 

We had become an earthquake family. ❤️

As dawn broke and Jared and I sat outside of the room watching the kids sleep, I couldn’t help but cry some more. The trembling continued and I could see Jay anxiously watching the ocean. As the sirens continued to wail, our neighbour Faye came to sit on our steps with her emergency bag.  

“I can’t sleep.” 

We looked at each other but said nothing. We just took a deep breathe and tried to process what was happening. 

A few minutes later we noticed a new shift of hotel staff arrive. 

“What the hell?” I said to Jared.“How can these people be arriving to work?” 

He went to speak with them. We learned many of them had slept on the road because they had lost their homes.

As our waitress shared her story of survival and told us stories of the devastation in her village she also shared why she came to work that morning. Her words pierced my heart and I couldn’t contain myself. 

“We just need to be positive and believe God is looking out for us because he protected us last night.” 

It was clear, she wasn’t trying to comfort us, she really believed. Her life obviously had not been easy and she learned to trust in her faith. 

“If I don’t have this job, I can’t feed my family. If the tourists are not taken care of first, they will not come back and if I will lose this opportunity and my job, I have nothing. This is everything to me.” 

I shook my head in disbelief as she looked at me and told me everything was going to be OK. She handed me a cup of tea and gently placed her hand on my shoulder. 

I wanted to tell her I wasn’t crying because I was scared. I was crying because I felt so sad for so many things in this life. How sorry I felt for the imbalance and the unfairness. I wanted to tell her that I knew how hard it was to be resilient in trying times. I wanted to tell her how I believe we are all connected by struggle and fear and sadness. I wanted  her to know I could see myself in her and how deeply grateful I was for her, 

But I paused,

I didn’t have to.

She already knew.

It was clear, her life was filled with hardship but it was also apparent she was making a conscious choice to rise above it. 

I pulled myself together and started to frantically call the airlines and embassy’s and google the most current information. 

We had one choice, flee or stay. 

I looked at Logan. She had remained so peaceful throughout the night of panic but the lack of sleep was showing and I knew she couldn’t make it another 24 hours on the side of the road. 

We saw the images of thousands stranded on the Gili islands (where we supposed to be headed) and I knew all those people would end up at the port. We couldn’t chance going there. We called the airport. No flights were available and more than 500 people were lined up with the hope airlines would open up more flights. 

Shit. 

We would be stuck another night.

As many tourists fled, we stayed put.

Our earthquake family had dwindled to 8. We spent the day together, getting to know each other, discussing our escape routes, drinking a bit of wine, crying, laughing and holding hands each time the earth moved. 

We went to bed the night after the ‘Big one’ feeling optimistic. Although the tremors continued throughout the day, they felt like they were decreasing in strength. 

The plan was to get a full night’s sleep and then make tracks in the morning. 

We all hugged and made our way to bed exhausted but hopeful the worst was over. 

Less than an hour later later, another two big quakes hit and we were evacuated again. Although they were smaller in magnitude (5.5)  they were much closer in proximity to us and we felt them with intensity. 

That night we stayed outside under the open air palapa of the lobby, all together. 

We gathered all the lounge cushions off the pool chairs and day beds. Laura, our newly adopted ‘sister’ from Australia got the kids a ‘doonie’ (duvet in Auzzie terms) and snuggled with them on the floor beside Jay and I. As I looked over at the three of them, cozied in together I thought about how easily it is to love each other when our guards and egos are down. 

In any other circumstance we probably would never let a stranger in like this, but tragedy really does bring out the best in people.

It also brings out the worst. 

Trust me, I have witnessed (and participated) at times in my own life. Trauma, terror, danger and panic, often lead to exhaustion, desperation and reaction. When we are scrambling to survive, we do whatever we can to protect ourselves.

 As reports of looting, people screaming and fighting with each other, and images of complete chaos came in, I was reminded of how poorly, we as humans, behave in the midst of fear and struggle.

Gratitude swept over me. As we laid in the open air surrounded by strangers I how much worse it could be, at least we surrounded by deep comfort and love. 

The next morning goodbyes were hard. How could it have only been two days yet we didn’t want to leave each other behind. As scared as we were, as much as we wanted to run away to safety, how could we be feeling such sadness and guilt and helplessness while fleeing for our lives?

We took a collection and gave all we had to the staff. We knew it wasn’t enough but it was all we could do. We hugged, exchanged details and then just like that we went our separate ways. 

Thank God, it all worked out and we made the boat to Bali. 

Thank God, Logan didn’t collapse as we worried she would. Her blood pressure had slipped desperately low after two days of not enough fluids or proper medications through her tube and she was very shaky and unsteady as we boarded the boat. 
The whole journey took about 12 hours but we made it to safety in Bali, frazzled,  exhausted, relieved and happy.

 Last night was a much better night. We felt safe but also still very  unsettled. I woke many times, sitting up to nudge Jared and ask “Did you just feel that?”  

It will take some time to get over what we’ve been through, we all feel very fragile.

Because, we weren’t just rattled physically. 

The feelings we have right now are similar to the 4 times we have heard the words “Your child has cancer” but also very different.

Surviving a natural disaster on your dream ‘bucket list trip’ around the world is unfathomable, but honestly, not quite as scary or even comparable to facing your child’s death every single day for 13 years at home.

Life is a total crap shoot and we refuse to let fear dictate how we #rollwithit, so if you ask any of us if we’d still do this trip again, knowing what we do, I can promise you each one of us would respond a resounding “YES!!!”

We have had so many beautiful moments on this adventure. So many things that have made us stronger and brought us closer together and none of those moments will ever be overshadowed by the fear or panic we faced on Lombok. Instead, we will forever choose to remember the beauty of the island, and the people we met while we were there.

On that note, I am not entirely sure how the media got word of us stuck on Lombok but we have to say, we have been overwhelmed with the support and encouragement we’ve received worldwide.

The message is clear, and it is SO NOT lost on us, whatever happens in this life, we know we are never alone.❤️

We left Bogota and  travelled to Medellin.

For most, (including us) when we think of Medellin we immediately think of the world’s most notorious drug lord, Palo Escobar.

After watching some of the Netflix series Narco’s we were excited to explore this crazy man’s elusive life in his hometown. To be honest, this was the whole reason for visiting Medellin. We planned on doing tours of his old mansion, his ‘museum’ and even doing a paint ball tour in his summer home. Although we knew he was a really bad dude, (in normal life I have no tolerance for drug dealers and would never glorify people who thrive on others pain) Pablo also seemed pretty cool, dangerous and glamorous. He was portrayed as a ‘Robin-hood like’ hero who stole from the rich and used his money, corruption and drugs to help the poor. Somehow this picture we had in our mind, gave permission for his awful atrocities and disgusting business to be played down in our heads.

Not going to lie, but we went to Medellin sort of cheering for Pablo, I mean, if you can’t beat ‘em, why not join him?? He is long gone, he did some bad shit, but he was part of history…. We rationalized our reasons and some how convinced ourselves we weren’t contributing to any ongoing problems or doing anything wrong by wanting to know more.

I mean how bad could he really have been?
We assumed the people of Medellin were probably proud of his story. After all he put them on the map. We thought Medellin was going to be like some of the other poor cities we’ve visited, unafraid to exploit the sad parts of themselves to please tourists. We expected to see Pablo tours everywhere, Palbo paraphernalia hawked on every street corner.

However, we never made it to paintball or his ‘museum’ or his mansion. Instead, we toured through Medellin and saw the people of this incredible, progressive city who have lived through years of hell at the hands of this monster. We saw resiliency. We saw hope. We saw kindness and we saw the core of so many people willing to expose themselves in an attempt to free their city from years of stigma and stereotypes.

Medellin, or rather the people of Medellin, changed my life.

My eyes were opened to things I didn’t even know I needed to see. I went to this city with an idea and expectation of what I was going to experience, and what I actually experienced was so far from my own expectation it blew my mind.

I will never be the same person I was before Medellin. This profound experience has forever changed me.

The first day we arrived we decided to do a free walking tour of the downtown core. We heard great things about these free tours and honestly couldn’t believe the city offered such a thing. We did some research and to our delight we found out the tours were in fact, free. The guides worked on tips but the concept started out of desperation to entice tourists to get to know the city.

We started our morning tour with a spunky and animated guide.

“Before we get started, let’s address your questions and what you hope to learn about Medellin”

Hands flew in the air and the Pablo questions were flying. We were all there for the same reason.

Our guide paused….

“Lets just start off by calling him the worst criminal in Colombian history…”

She told us how most people in the city of Medellin just wanted to move on and didn’t want him to have a name anymore. How when locals see her touring around foreigners and hear his name they assume she is exploiting a terrible time in history. She reminded us although there are many glamorous stories portraying Pablo, the truth can never be argued. Tens of thousands of people died because of him and still today, many suffer because of his desire to exploit Colombia as the worlds biggest exporter of cocaine.

Despite our questions, our guide lead the tour based on facts. She showed us the progress of the city, the things they are proud of, but she also explained the politics of the nation and how hard it has been for the city to move forward. Corruption has always plagued Medellin with obstacles.

The next day we did a coffee tour to the small town of Ciudad Bolivar.  A region where 563,000 families rely on growing coffee cherries.

“This is Colombia’s second biggest export.” Our guide winked as he explained the back breaking labour people do every single day for mere pennies.

“It would be so much easier for these people to cultivate coco but they don’t” He paused “Because they have pride.”

Our guide explained the initiatives Colombia is taking to try and curb drug manufacturing by offering farmers in rural areas an opportunity to grow something other than coco.

“Basically, we can grow anything in Colombia” he said “But where there is demand, there will always be supply and growing coco is easy. Growing potatoes or coffee is hard work for less money”

He rolled his eyes in way that indicated how tied their hands really are.

“Cocaine is big business in Colombia, the Guerrillas have so much control in this country. Corruption is a problem, and sadly, I don’t think there is anything that is ever going to change that.”

We asked him about the ‘Pablo’ Era, intrigued to hear a different perspective from the previous day.

He would have grown up in Medellin around the time when shit hit the fan and we were interested to get his take about the tourism popping up since the hit series Narcos went mainstream.

He very cautiously explained his perspective of living in fear and then sarcastically asked us if we would ever consider visiting the world trade centre in NYC wearing an Osama Bin Ladin T-shirt to play paint ball at the very place where so many had lost their lives.

You could have heard a pin drop in the car the moment he finished his sentence.

All four of us felt sick and looked blankly at each other.

It was in that moment I realized one of the biggest problems with our world.

Being oblivious and being detached from a situation, having the glory of being blissfully ignorant to pain and suffering— is not always a blessing.

Sometimes it can  just make you a total asshole.

We all agreed. NO PABLO

From that moment forward, we instead decided to focus on the resiliency and beauty of the people who have come through such unfathomable tragedy.

We wanted to focus on those strong enough to rebuild and reframe their adversity and those who knew how to #rollwithit

Yep, Instead of paintball at Pablo’s mansion, we rode the metro.

Imagine, but a simple metro train, something us North American urbanites take for granted, (and even despise) is the ultimate symbol of hope in this city.

Construction on the metro started in 1984 at the peak of the ‘Pablo Era’ when Medellin was considered the most dangerous city in the world. For every reason it should have never been completed but the first journey down the track took place on November 30th 1995 and since that date it is a symbol of hope for this city.

People ride the metro to feel like they are going some where.

The metro symbolizes pushing forward, it symbolizes hope and progress and to this day it remains the only metro to ever exist in Colombia.
There is one long line that runs the length of the city. From there it branches off and cable cars connect low income areas and mountain villages to the city.
The people of Medellin are so proud of the metro.

You ask a local what to do in Medellin and they will reply

“Ride the metro…”

You won’t find a single piece of garbage in any station or in any car. No one sits down while they wait for the trains, there is no graffiti, and it is considered to be the safest places in the city.

You find yourself in trouble in Medellin, you head straight to the metro.

After riding the metro, we decided hop off to jump in on another ‘free’ walking tour of a neighbourhood called Comuno 13.

Disclaimer——🙄

I am about to get deep…..

Bare with me 🤞🏻❤

I have to share my insight, because visiting this ONE neighbourhood changed my whole view of life.

It changed my entire perspective on struggle and joy and the relationship between the paradox of living both simultaneously, (and you all know I’ve been exposed to my fair share of struggle 😩)

This tour was, hands down, the whole reason I think our family needed to visit Colombia.

Comuno 13 was once considered the most notorious and dangerous neighbourhood in the world due to its insane homicide rates and forced displacement of thousands of residents. It was once controlled by Pablo. It is where he built some of the houses for the poor, while also exploiting them to a life of crime.

After ‘the worst drug lord in the world’ was taken down this poor neighbourhood was an open target and epicentre for paramilitary, guerrilla, and gang activity. It is perched at the edge of the city and it’s location is ideal for crime. Just on the other side of the mountain is direct access to the main highway providing easy transportation of guns, drugs, and money.

This neighbourhood is just isolated enough from the city to fly under the radar, yet close enough it provides easy access.

Add in- The people were poor and desperate and it was a perfect target for crime.

Comuno 13 was the perfect location to pluck children and vulnerable folk from their homes forcing them into a life of violence.

When there is no option but survival, the privilege of morality goes out the window. Drugs, guns and dirty money were traded in this community without regard.

But, all the shit aside, for our tour guide, Comuno 13 was simply home.

She teared up as she explained to us how awful it was to wake up each day afraid.

How it felt to grow up and make friends knowing you may see them one day and then never see them again.

She took us to her home. She told us about how hard it used to be to walk up the zigzag dirt trail along the hillside in the heat but how now, the new escalator system not only elevated people to their homes but also their spirits.

Twenty-five of us sat on the rooftop patio of her tiny shanty. She offered a few plastic chairs, and removed the laundry strung on the lines above our heads. She asked her children to welcome us and shake our hands, and then she started to cry….

She had only just learned English a year earlier and although her message was broken, I didn’t need to hear words to feel how shattered yet pure her heart was.

I sobbed.
She told us how tired she was of fighting.

How all she wanted was to lay down her burden, how she didn’t want to feel afraid or unable to move forward anymore.

I felt her.

She told us how hard it was to begin to believe in possibility.

How for years, every one gave up and how little hope she had.

And then she told us about the small glimmer of possibility that shaped this community.

Graffiti, art, colour, and the ability to see beauty in such awful circumstances became an expression for this neighbourhood.

This gift changed everything. The art brought with it more than just hope, it brought change and with it droves of people.

Us.

And we were welcomed.

And having us there, seeing us in her home- was about opportunity.

It was about pride.

It was about resiliency and it was about rising strong—–and knowing there can be a way through even when it feels like there is no way out.

I understood her pain. I had compassion for her on a deep level.

Her gratitude was more pure than any I’ve ever felt before. Her spirit seemed to grow stronger despite her struggle and although she was very simple, I was in total awe of her.

She didn’t need to be deep. She walked the walk. She had lived through the absolute worst and she was still willing to be open, kind, loving, truthful and hopeful and this woman’s perspective absolutely changed my life.

I couldn’t stop crying. I looked at Brody. He was stunned. He couldn’t speak.

I couldn’t stop thinking how much I wanted to be like her.

I looked at Jared. He stared out from the roof top and tried not to make eye contact for fear of falling apart. He got it. We all felt it.

And, as I panned to Loggie I saw an unspoken understanding and a deep knowing of the feeling this woman was trying to express. Loggie’s fear is different, but in some ways the same. She lives her life feeling like there is no way out and then somehow, just like this woman has had to, she finds a way to dig deep to accept and to carry on.

She went on to explain all the graffiti, and its symbolism. Street performers danced and rapped for us and we ate from food carts and drank beer in the pubs and when we left Comunu 13 that day we were all changed.

And, the message that will forever play over in my mind from our days in Medellin is these powerful words from our guide.

“People always ask me how we have been able to survive such a terrible time, all the atrocities and the fear, with no hope and so much sadness”

Her words silenced us all.

“I tell them, you have to train your brain how to forget. It is an art. You will always know the bad things happened. Your body will remind you, there will be trigger. You will ‘know’ every day all you have lost, because when you look, it isn’t there anymore, but you have to train your brain to file away the memories of how bad things were, and then you have to give permission to yourself to forget them.”

She continued. “When you do this, you don’t make any of ok but instead you open up your mind so you can remember the good things and you get stronger when can focus on those memories”

She could barely speak… “Because, I know if you don’t grasp to hold of the good things and you are weak in your thoughts and you let the bad memories and awful feelings occupy your mind, you will continue to be alive but you will never,  ever be free to live again.”

My therapist might have a hay-day with this strategy but I swear to god, I know IT to be an ABSOLUTE TRUTH.

BOOM.💥

“The force is in you”

It’s been a while since I’ve sat down to write.

The thing is, I feel like a broken record every time I put my fingers to the keys.

“Things are’t great. We are stressed. We are doing our best. I want to eat my own hair, or drink all the wine in the house for breakfast. No, Jared and I haven’t decided to get divorced YET 😩 but some days we are barely holding on and No, Brody’s hair isn’t suddenly grey because of his own stress but yes mine is, thanks for noticing”

You get it.

Life has been pretty much the same. It has been uncertain, up and down, and most the time the worst it has ever been.

We had a terrible few months. October, November and December were some of the worst days of our lives. We spent weeks in the hospital. No one seemed to know what was going on with our sweet Loggie but in the end it was decided that we needed to stop the chemotherapy.

Consensus was that she was declining more quickly than she should because the 300 plus doses of lifetime chemotherapy was throwing her entire system into crisis.

Basically, her body was saying no more.

This terrified us because we knew we hadn’t reached our goal of shrinking the tumour as much as we needed to but we also knew that we were playing Russian roulette with every dose we gave her.
The Coles notes of our discussion with Loggie’s team was if we gave her too much more chemo might actually kill her before the tumour did.

Ethically, we needed to make a big decision, was the risk of what we were doing worth the benefit of what we might achieve?

We’ve been told a zillion times and we ‘get’ it.
This disease no longer fits the criteria of  curable.

So the question we needed to answer was, how far did we want move the goal post?

We entered the grey area of quality vs. quantity of life.

There was a lot of soul searching and crying and in the end we decided to try giving her only a partial dose of treatment.

We proceeded with one final round of poison in November and crossed our fingers that we would see just a little bit more shrinkage on her next MRI.

Our oncologist encouraged us to remain hopeful.

“I know…” I could barely make eye contact with her, “You have always told us to be hopeful. I try, but I fear I am running out. What if hope is not a renewable resource?”

She awkwardly paused mid sentence and her eyes glassed over. It was the second time I knew she was going to start to cry since we’d been admitted.

“I ALWAYS have to remain hopeful….” She said, “Or I would never be able to continue to do this job.”

I smiled and hugged her. I could read between the lines. I could also feel how hard this was on her as well.

We stabilized Loggie, flushed the chemo out of her system and spent Christmas together being showered with amazing gifts and unbelievable support from our community.

2017 ended and we quietly thanked the universe for giving us another year together, while silently begging for an easier 2018.
January seemed promising. I didn’t want to write much or be cocky in the fear of jinxing our good fortune. Other than a few trips for routine blood work we avoided the hospital all together.

I wondered, maybe the chemo really was causing her so much harm? Maybe taking her off treatment was the key to helping her feel better?

I started to let the hope flow back in….

Then, just like that BOOM>>>💥💥💥

We were admitted back to hospital.

Her MRI was scheduled for Feb 1st. The days leading up were ‘iffy.’

Logan had started another cycle of vomiting and her blood pressure was ‘all over the map.’

By the time we arrived for the scan that morning she had already been sick three times and there was concern as to whether the docs would be able to stabilize her enough to lay in the machine for an hour.

Scanxiety is a real thing.

Oncology parents and cancer patients know it well. Doctors always try to reassure us by saying the picture is only one measurement of success but we aren’t stupid, the tumour shrinks, the treatment is working. The tumour grows, we are fucked.

But what happens when the tumour is stable?

Well, in the past, a stable tumour used to have us leaning on the side of victory. As long as Logan was doing ok and the tumour hadn’t grown then we would accept success as ‘no change’.

Sadly, this isn’t the case for us anymore.

We got the results of Logan’s last MRI and her oncologist, Juliette quietly and solemnly told us the November dose of ‘last ditch’ chemo hadn’t worked and we didn’t see any change in the residual tumour size.

What used to be good news, was now suddenly a shock.

The tumour at the size it currently is reeking havoc on Logan’s autonomic system. Without shrinking it down any further, this is as good as it gets. The problem is, the way her system is now, any more chemo is out of the question. Her body needs a break.

Puzzled, I asked our oncologist what she was trying to say. Once again, she gave me the awkward stare and said “We are now stuck between a rock and a hard place….”

She also told us she wanted to admit us to hospital to get Logan’s symptoms under better control and try to come up with a better long term management strategy.

By the end of the first night of admission, Logan was in full blown crisis. Her blood pressure went from 180/130 and then crashed down to 31/14. She was screaming in pain and vomited up to 20 times. Morphine was being infused around the clock along with every single every other medication cocktail the doctors from Endrocrine, Acute pain, Nephrology, Cardiology and Oncology could come up with. Juliette consulted a specialist in dysautonomia from the Mayo Clinic and was referred to some hot shot doctor who moved to North Vancouver. We felt hopeful but unfortunately were met with the same answers we had already been given. Logan’s autonomic system failure wasn’t responding to treatment because there was a tumour in the brainstem overriding all the medication.

Fuck.

Now what?

We spent two weeks in the hospital meeting with every single kind of doctor. They racked their brains trying to come up with a plan. They tracked the extreme swings in blood pressure, heart rate, pain, vomiting, sleep patterns, breathing, and neurological function. We watched her like a hawk and feared a possible brain bleed from the extreme blood pressure swings. The days were intense and no one seemed to know what the right answer was.

Time after time we heard the same thing from everyone….

“We don’t know…”

We crossed off drugs that weren’t working, and we tried new concoctions and combinations of drugs we hadn’t ever heard of before. Finally after a couple weeks of trial and error we started to see improvement and Logan’s pain and vomiting and blood pressure started to stabilize.

We slowly detoxed her off of the 24 hour opioid infusion to see if the 10 new pills 😳😫 a day were in fact doing their job.

BINGO….

She seemed better.

Juliette let out a sigh of relief and this time, I looked awkwardly at her and started to cry…..

“Hope, right?”

She smiled. “For now.”

We chatted about what was really happening. She told us she wasn’t sure what was triggering these episodes and she couldn’t actually be clear if these were cyclical episodes or Logan’s body succumbing to the tumour but she assured us she had a plan….

A. Manage the symptoms as best we can for as long as we can

And then if/when the symptoms can no longer be managed, hope we have given Logan’s bone marrow and organ function enough time to recover and she is strong enough to

B. Apply for a new chemotherapy study that has come available. (Loggie currently doesn’t meet requirements and to be honest we have to be careful not to do more harm than good and its still not a cure but at least something…..🤞🏻🤞🏻)

“Now what?” I asked Juliette…… “How long will we get before this new cocktail of medications doesn’t work anymore? Hours? Months? Weeks? Years??” I sounded desperate.

“I don’t know…” was her reply.

So here we are…. Stuck in ‘I don’t know’ land.
Not knowing how long we have until we are in full blown trauma again, not knowing when our life is going to be turned upside down- or even right side up🙄. Not knowing if we will need to try chemo again soon or if chemo will ever even be an option again.

We are wedged between a rock and a hard place and we don’t know what the hell is the right thing is to do is our BUT  here is what we’ve decided to TO do.

We’ve decided to do Epic shit.

We’ve decided to add this uncertainty to our ‘fuck it’ list and attempt to have another adventure.

Jared is now officially unemployed. Yes, it is scary and it totally sucks but it happened and it is what it is. Maybe he should do what every other logical person would do and find a new job right away, but he’s not going to.

Logan has brain cancer and hasn’t responded to treatment the way we hoped. Yes, it scary and it totally sucks and maybe we should do the responsible thing and stick close to the hospital and worry and wait for the next ball to drop but we aren’t going to.

Brody longs for normalcy and routine and he can’t have it. Yes, it is sad and it sucks but the reality is nothing is ever going to be normal in his life. Maybe we should encourage him to finish grade 8 and play another season of lacrosse and maybe we should do our best to try to make his life as normal as possible, but we aren’t going to.

Instead, we’ve decided to take a break from the job interviews. We’ve pulled Brody out of school (thank goodness for a supportive school district and a smart kid. He’s finishing grade 8 with the straight A’s he currently has). I have learned how to access Logan’s port and give her an IV and the proper meds in a crisis.

We have dickered with insurance companies for coverage, and had long meetings with our doctors around ‘goals of care’, ‘fuck it’ lists, emergency medical situations and “what if’s.” Half of the doctors on our team think we are crazy and the other half have told us we are inspiring but the good part is, ALL of them have jumped on board and are supporting our plan and helping it become a reality

So, yes, we are running away.

LIFE ALL OVER THE MAP—amped up version.

How long are we going for?????? We don’t know.

Where are we going? We don’t know. We have a loose plan (which we’ve thrown together in the last couple weeks) but we aren’t really sure…. (Mexico? Belize? Nicaragua? Costa Rica? Peru? Columbia? Panama?——any suggestions- cheap and awesome, and safe, preferably with kick ass almost free health care😉????)

We have another MRI loosely scheduled for the end of May. So for now, our plan is come home then and re-evaluate. Maybe coming home at the end of May will be a pit stop or maybe we will be home next week before our adventure even gets a chance to start….

Who knows….
We sure don’t, and we aren’t clear if this is the right thing to do but we are going to TRY anyhow.

In the words of my fave author, Danielle Laporte “You can be scared, and really, really ready.”

Hells ya….

I am sure there will be some of you who will judge us for this decision. (Believe me there is NOTHING you can say I haven’t already said to myself🤪) There will be some of you who won’t think this is a very good idea and some of you who will throw down opinions around like experts about what you think we should do.

I get it, I really do, but the thing is, you never know what you should do or what the right  thing is for YOU until you are faced with a situation. This might not be what you’d do… in our shoes…..but its what we are doing and we hope its awesome.

If it isn’t, we will listen to all the “I told you so’s” when we get back. For now we don’t want to hear it.

We may not have a lot of time left for adventure or travel. The whole family wants to do this.

Logan’s latest setbacks have amped up a new level of fear and stress and we have never felt more unsure about what our life will look like down the road. Yes, it may be too hard to be away and we may get where we are going and turn around and come straight back. We know there will be challenges and its not going to be easy and perfect.

The point is despite our fear, we are going to do it any way.

We look at our life differently now than we ever have. Recently our life has been a series of bullshit and shitty circumstances. Because of this, we could give ourselves permission to sit around and feel sorry for ourselves. We could wallow in self pity and sadness or we can make a choice….

To look at the time we’ve been given as an opportunity and a gift.✈️

Jared is jobless, but he now has time.  Brody can leave school and not miss at thing and start grade 9 fresh and without consequence. Logan is off chemo, and we’ve got her meds somewhat levelled out and I am now trained and capable of being a nurse/mom on the road. I have been given an amazing opportunity to write a book and even if this adventure doesn’t fill the pages but instead drains all our funds, we will be attempting to fill our hearts and our accounts with something much more valuable than money.

We will have memories and experiences, none of which can never be taken away. Not by cancer and not by an uncertain life.

So I pose the question, is it really that crazy for us to go on this adventure or is it more crazy for us to stay home?

We leave in a few days- First stop Mexico (close enough to home, with a couple of nurses we know in the area, and a jumping off point we are familiar with to get comfortable with being on the road and see how Loggie adjusts)

This may seem nuts……We know it, but we are doing it anyhow.

This isn’t about a bucket list or tick marks, (ok, maybe it kind of is 😘) but rather it about our own ‘fuck it’ list. Fuck it- meaning- why bother trying so hard to keep things normal. Fuck it meaning to hell with being afraid of what could happen anymore (when most of what we fear already has) Fuck it- meaning- lets just trust it will all work out….(I really love the versatility of this word)

I mean what really matters NOW???

We’ve spent the past 13 years trying to hold on to a life we hoped would turn out a certain way. We’ve spent more time that I’d like to admit wishing for cancer to end, or praying for the strength to get over it so we could move on and live the life we’ve always wanted. A life just like everyone else’s.

But, the thing is, NOW feels like crunch time and we are clear. This life is never going to measure up to what we had planned for it to be. We can’t grasp onto a false image of reality anymore. We are in a place where we’ve lost almost everything we’ve worked for and desperately tried to hold onto, and now we aren’t afraid of losing anymore.

Now, the only fear we have is regret.

Travel has always been a passion for our family.

We run away to find ourselves.

We run away to connect to humanity and to each other.

We run away because life is so much easier when we aren’t trying to live it the same way as every one else.

We run away because cancer doesn’t seem to have as much power on the road.

We run away because we don’t know what else to do.

So, off we go….

We will keep you posted.

We will update and share our adventures through our Facebook, Instagram and You Tube channel. I promise I will blog when I can (in between working on the book😉)

We hope you will join us on this journey. We hope you will root for us, and we hope you will wish us only goodness and the adventure of a life time…..

We also hope you know someone who might hook us a high paying job when we get back…. Hahaha! 😉

Carpe Diem,

J

It’s a weird place to be to be in, but here we are.

It is a new year and we have no plan.

We are all home together. No chemo schedule and no lingering work or projects. Time is standing still and although every day seems to be the same shit, there is also a weird pause in the madness giving us all some much needed respite.

Bdog seems to be the only one who has any real obligations on his calendar and we joke how we are all living vicariously through the normalcy of his life.

Each of us are doing our best to take this time and use it to exhale and relieve some of the stress that has literally paralyzed us for the past two months.

It has been such a shit show and we’ve been left reeling.

Things have been extreme in both goodness and terror and the ying/yang of it all has thrown us for one hell of a loop.

Wrapping our heads around where we are at, while trying to get our thoughts and lives sorted seems daunting. How do you begin to map out what to do, when you don’t have direction or a plan and all you can do is fear what the F is coming down the pipe?

We are living on the brink. No one is willing to crack but it hasn’t been easy to accept any of this. We feel like we aren’t doing enough. We aren’t enough. We haven’t thanked all of you enough, we aren’t worthy enough, we haven’t figured out enough of a plan to save Loggie.

We aren’t saying much to each other on the outside but I know on the inside, our minds are all spinning.

Surrender is hard. Accepting circumstances for what they are and meeting yourself where you are is a hell of a job.

It is so easy to beat yourself up for not meeting your own expectations or feeling enough when you measure your life and realize you are so fucking far from where you want to be. Coupled with the realization that you are going to have to give up control and expectation and just be—— well, holy shit.

Insert anxiety.

If you are someone like me, the constant desire to control is ever present. I am type A. I like getting shit sorted. I relish in the idea of getting to the bottom of things. All I want is for Logan to get better and I want a clear knowing of what our life is going to look like. Is that really too much to ask? (Insert sarcasm😉)

Even though this past year and half has been hard and I have loathed that I didn’t have any control over our life because it was filled with crazy chemo schedules and terrible routines, I realized that having some plan, any plan, is so much easier than having no plan at all.

I am desperate to let go and try to find the strength to trust the process but it is the fucking hardest thing I’ve ever had to do.

Trusting is so hard, and the realization that everything in this life is actually almost, always out of our control has been sobering to me. We really have zero say in what life serves us up, the only true freedom we have is our ability to choose our response ~ Whoa.😳

As an amazing cancer survivor, who also lost her husband to cancer (WTF??) recently wrote to me “There are no what if’s, there is only what is.”

How profound is the realization that in order to have peace we need to accept where we are at. This is it, and no amount of fear or anger or anxiety or control is going to change what will be. None.

“Surrender. Lean into it. Focus on the what is.” I try to calm the urge to combust so many times each day

My yoga teacher gave me a mantra to chant. “Om, gun ganapataya, nama ha”

It’s directed at Ganesh, the elephant-headed god and one of the most worshiped deities in the Hindu faith. He’s known as the remover of obstacles and he’s in charge of bringing new beginnings.

Basically, he removes the bullshit and clears space. Jared laughs at me as I scream the mantra out several times a day, almost begging to be heard.

We’ve just come through one of the worst times of our lives, barely.

For nine weeks straight Logan vomited, cried in pain and weakened. She lost way too much weight, she grew pale and we spent more days in the hospital than I would like to remember. There were days when she didn’t know what was happening around her and there were even days when her mind failed her and she didn’t even know who I was. We were in full-blown trauma for weeks on end and we all feared the worst.

No one could figure out what was happening. Her oncologist was baffled. The thing is, we reduced what would be her final chemo dose in November and all hell broke loose.

This shouldn’t have happened.

We were convinced the tumor had to be growing. She was dying. We could feel it in our bones. Even Logan told me she wouldn’t make until the end of January. The conversations became very heavy and dark. She gave me a list of people she wanted to be with her as she crossed over. She started to write a letter to her brother. She apologized for not being strong enough to get better and she cried as she told us that she was happy we could finally be free of her cancer.

We did a lot of crying and although our life was in total distress something else very magical was happening around us.

We were being lifted up and despite feeling broken we had an entire community rallying around us that wouldn’t let us shatter.

“Don’t worry, we will carry you….” The messages flowed in and with it came cash and meals, and gifts galore and some of the most powerful and deep love we have ever felt.

We’d wake up each morning (after almost zero sleep) feeling desperate and by the end of the day there was so much goodness and kindness that had found its way to us, we felt strong.

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We were completely torn.

How could this be some of the best and the worst times of our life all at once?

We met with our team of caregivers and discussed our goals of care with the hospice team. One of the hardest conversations I’ve ever had, yet so clear and freeing.

Our number one goal was to figure out a plan so we could spend as little time as possible in the hospital and as much time as we could together in our own space surrounded by our own tribe.

It was clear Logan was shutting down and giving her anymore treatment was likely going to kill her. We had to make a choice. We decided not to give her the final doses of the chemotherapy and let go of finishing the full protocol we signed up for nearly fourteen months prior.

We did an emergency MRI to be sure there wasn’t further spread of the disease and when we saw some minor improvements we cried because although we knew the chemo was in fact helping her cancer we also knew, it was hurting her whole body even more.

Out of desperation we started working with an acupuncturist numerous times a week. We spent countless weeks juggling new medications, and trying new vitamins and diets, and essential oil therapies. We surrendered to being forced to sedate her when things got too bad, we cleaned up vomit, cried our faces off, blocked out the bullies, and chatted endlessly and intimately with friends, family, nurses, hospice and healers, and basically in the end we decided it was time to give in and let go.

Jared finished working and as a family we prepared to make her comfortable and take this time together to figure out and learn what letting go actually meant.

And now here we are……

Weeks have passed since Logan has had her last dose of chemo and I’m pretty sure she won’t be dead by next week. 😉❤️🙌🏻

In fact, she seems to be turning a very small corner and although she has a LONG way to go she is a bit stronger each day. ❤️

Now as we look back we feel clear. With less emotion and panic, we realize it was true, the last dose of chemotherapy  almost killed her.

Her system was shutting down and her body was telling us it was way too much. She’s had more than 300 lifetime doses of chemo and she’s far to fragile to handle any more right now.

Sadly, what really sucks is that she still has so many symptoms that are related to her tumor and each are a reminder of what we hate to be true. The chemo didn’t cure the cancer.

It has shrunk it in a few spots but not nearly enough to reverse all the effects or her deterioration.

Her blood pressure is still very much all over the map. Some days she’s strong and clear and other days she still pukes her guts out and we can’t even understand what she is trying to say. A tumor in the brainstem affects so many vital functions and even though hers didn’t look worse in November, it is wreaking total havoc at the size it is at.

So now what?

Well that is a big fucking question isn’t it?

Basically we don’t know.

Our acupuncturist thinks we need to take an approach of allowing her prana/chi and life force some time to return to her body before we knock her down anymore. He believes we need to nurture her mind, body and soul and start to heal her from the inside out.

On some level our oncologist agrees. More chemo might kill her but so will the cancer sooner or later. We are caught between a rock and a hard place.

We know we were on a roll at one point and the tumor was shrinking and her symptoms were improving with treatment, so stopping treatment will likely mean only one thing.

I don’t like to assume but honestly, this is an educated guess based on the fact that after 4 rounds of trying to beat this cancer, it keeps coming back.

There so much fear around not doing anything. There is so much fear around surrender and allowing time for recovery and healing not just for Loggie but for all of us. We all need time to recover, but feel like we aren’t doing anything if we aren’t doing something.

We feel like we are giving up and we feel like we are failing.

Fuck.

There is an option to try another type of chemo on a study but we don’t know if it is the best thing to do. Apparently just because you can, doesn’t mean you should.

This ‘maybe’ chemo, has a bit of a different approach, one drug blasts the tumor cells and the other drug cuts off the blood flow to the tumor. It’s a fairly new regimen and the results are promising but the treatment is long and hellish and not curative.

Nothing is curative at this point so we wonder, do we advocate to hit her with more poison right now while we have momentum and the tumor is shrinking?  Will this be her her best chance at a longer survival? Or do we wait to see if this bloody thing will stabilize and give her some time to heal and get stronger and this will be her best chance at a longer survival?

We don’t know what the right thing to do is, and we have more questions than answers at this point, likely because there is no right choice anymore. There is no clear path; there is no ‘what if’s’- there is only ‘what is’.

I am currently researching all natural therapies, we are doing yoga, and we are all taking this time to focusing on what we each need right now. We all have our own resentment and anger and fear we need to move through. We are ‘in search of’ the answers and are open to whatever the universe serves up.

Jared has doing cross-fit like a maniac trying to get rid of his stress (on a good note abs are a win, win) 🙌🏻 and Brody is happy to be home and is taking some comfort in the fact our life not being in constant turmoil.

Me, I am writing my way through this, drinking more tea and less wine and spending more time on the mat with my sweet girl. Life is about as normal as its going to get but, still, there is a weird feeling brewing just underneath this lull.

It is almost like something is about to boil over but we aren’t quite sure how to turn down the heat.

We don’t know how to navigate this new place of uncertainty. We don’t know how to enjoy this ‘quality of life’ and just be.

Because all we want to do- is do.

Anything, something……

We are coming to terms with the fact that we are not in control of any of this. It is far greater than us, and letting go of control has been hard and full of deep personal exploration.

We don’t know what is right, and we may never know, so we are focusing on doing whatever feels right for each of us in the moment.

For Logan, it is simple. She is coming to a place where she can engage again. This is a place, where she doesn’t feel like she might need to say goodbye every time she says hello. She is getting up out of bed on her own in the morning instead of needing to be helped. She’s eating real food again and not just fluid through the tube. She’s made it to a few yoga classes and on the good days she is actually taking less medications.

It’s one day at a time right now but the funny thing we are learning it has always one day at a time. It is weird how we’ve convinced ourselves to believe otherwise.

Right now there is no preparation, no real plan, no rush, just now- just what is.

On that note next week is MRI week again. We are setting our intentions and hoping is will give us a clearer picture (pardon the pun) of what feels the most right in our hearts and we will know what to do next.

Peace, ✌🏻❤️

J

There is nothing in the world worse than being helpless.

I don’t know what to do.

Everyday feels like we are trapped in a funnel of terrible circumstances that go from bad to worse. I am grasping at anything that could help us but I don’t know how to pull us out of this mess or how fix any of it.

It feels like all we are doing is circling the drain.

I can literally feel my heart breaking. It’s  a constant pain that goes from a dull shiver to a piercing shrill.

I feel antsy and unsettled. My mind is racing but I’m frozen in fear and my body feels foreign like I’m living inside of a mere shell of who I used to be.

Desperation. Grasping. Fear. Paralyzing worry and constant hurt.

All I want to do is scream and panic and run away but it’s like I can’t move.

I feel like every day we are sinking deeper and deeper into quick sand and finding the energy or strength to jump into action and attempt anything feels impossible.

My Christmas tree has been sitting on the living room floor all week.

Time ticks. The days are morphing into one. Day and night don’t exist anymore.

I just sit- and stare- and think and listen for the next moment when Logan calls out for me in pain or need.

I feel like a robot in survival mode.

I watch the moments tick by and wonder as each one passes if we this is what it feels like when you realize you are losing time.

I don’t like where this is headed-

Everyday that passes and things continue to get worse our hope fades.

We are trying to rally but we are so fucking stuck and there just doesn’t seem to be a realistic way out of this mess.

I don’t know what to do.

I’ve never been in a place like this before.

I don’t know how to care for my child- and I’ve never been here, where I don’t even know how to comfort her or ease her suffering or my families suffering.

Jared and I try to support each other but the only words we have seem convoluted and confused and lack direction.

“This is just so fucked….” seems to be the only mantra we can muster up these days.

I broke down and took Logan for acupuncture the other day. I was desperately googling holistic approaches to pain and nausea when the name of one doctor kept popping up. I called him, explained the situation and he got Loggie in right away.

The treatment of pins and needles and a weird taser gun miraculously helped her and she had about 24 hours of relief.

We were so happy and optimistic but, sadly, her respite was short lived and now she seems worse than before ever seeing him. We can’t get back in for another treatment until next week and I can’t help but wonder if any of this is even going to benefit her or if it’s just another way of grasping.

Everything feels like it is falling apart in our life.

Jared’s job is another nightmare. He thinks he will need to take an unpaid leave of absence and he is stressed about his and his clients that really cares about.

But his fucking kid is fighting for her life!!!!

He needs support and help.

As a good friend of mine always says to me “There are only two kinds of people in this world… those who are part of the solutions and those who are part of the problems”

Ego is a fuck of a complicated thing.

To say this has been a blow to Jared at the worst time of his life would be an understatement-

He’s really struggling with failure and desperate not to let anyone down
but for me, all I want is for him to walk away from this situation better and stronger.

I just want him to be here with us, where we need him to be and where he needs to be. Present with his family in crisis.

I want him to view this time in his life as a reminder of how important it is to filter your energy and resources into places you know will support you when we need them most. And to let go of the rest. I want him to rise above.

Jared assures me it will all work out.

I’m not even sure what that means anymore or if he believes it either, but I’m holding on to his words for dear life at this point.

What we don’t need is yet another fight but you can’t control the shit-sometimes you just have to wade through it.

We don’t really need stupid cancer either but no point in fighting things we can’t change.

This is where we are.

We NEED to focus on staying strong. We NEED to focus on rising up. We NEED to get through this horrendous time.  It’s all we can do….

So for now, here is the plan….

1. Hospice. They are applying for a grant to see if we can get some home care nursing support. We have decided we want to keep Logan home as long as we can manage. If we get the funding then we can hire our own nurse or care-aid to come to our home a specific number of hours per week to relieve us and help care for Logan. Less trips to the hospital and we can create a support team that is in our own space.

2. We are going to do a stay at Canuck place in the coming days to work with their own specialized medical team on a symptom and pain management plan. Apparently they are much better equipped at this point in terms of thinking outside of the box on how to manage vs. reacting to Logan’s pain and nausea.

3. Another MRI has been booked for the end of January (but may be bumped up) and a referral has been sent in for us to revisit the surgeon at VGH to discuss a possible biopsy and see what he thinks.

4. We have some more tests scheduled (will they ever end?) that require some OR time so we are waiting to hear when we can get in to complete those. In the meantime we need to wait for Logan’s counts to recover from the previous chemo. Her system is very sluggish.

5. If she doesn’t improve or get better with this break from chemo (which is likely what will happen) than we do have the option to apply for a relatively new chemotherapy regimen. The thing is- the results aren’t stellar for Loggies tumour (we are pretty down the wire on options) and our oncologist fears without a break from chemo Logan may not even tolerate this new plan. Basically, it’s a delicate balance between causing more harm than good or as she put it being stuck between a rock and a hard place.

6. We are going to try to run away. I know it sounds completely ridiculous and stupid at this point but it’s our jam. We want one more (ok we want many more but for now- one more) trip away. It’s pretty far fetched at this point but we are throwing around the idea of sunshine and family escape time before the last ditch attempt at the iffy chemo.

7. This one seems simple…. but is hard as fuck. We are going to try to not go crazy or become angry and petty and take shit out on each other. We are going to try to block the negativity and hurt and do our best to rise up during this fuck of a mess.

And that’s it.

There  you have it team…..
This is where we are.
It’s super shitty but it is what it is and we doing the best we can.
I have to say thank you to SO many of you who are awesome.

Your love and nice messages and kindness and support really do offset the bullshit and keep us going.

Basically, even though most of you are complete strangers we love you all and you feel like you’ve become our family.

Funny how life works….there is always something to be grateful for. I am grateful for this blog bringing all of you to us.

So with that said, many of you have asked how you can help…. Literally, my inbox is jammed with offers and so many loving people pleading with me to let them do something….anything…

So, after lots of tears and putting our pride aside we decided it is time to accept help. There are going to be a few options and some amazingly supportive avenues if you do want to help. (No pressure)

A team of incredibly awesome Wild Mom’s are rallying to spearhead the help train us I will share the ways you can get involved on the Facebook page if you so wish to help.

Thank you all so much.

Much love to all❤️❤️

J

I am supposed to be sitting on a beach in Mexico today.

It is our 15 year wedding anniversary and it has been 13 years since The JayRod and I stole a week away.

It has also been almost 13 years of childhood cancer. So, ‘couple time’ hasn’t really been a thing for us.

We knew booking a trip away wasn’t the best timing but Loggie’s oncologist encouraged us, and almost pushed us to take some time together.

“You and Jared are running on fumes. Every time I see you, I can tell you are breaking down. This situation is more than any one could handle and you really need to take some time away and recharge.”

She is right.

Jared and I have never felt exhaustion like this before. I feel like I am in a fog.

ALL.THE.TIME.
Overwhelmed.
Angry.
Frustrated.
Sad.
I have never ending hives and a dull headache that won’t go away. We don’t sleep. We aren’t eating properly. We are all feeling so depleted and we just want to shut down yet the only option is to keep going.

Juliette (our oncologist) agreed to adjust Logan’s chemo days to make sure she’d be on an ‘off’ week while we were away.

By doing so, she wasn’t supposed to need blood or platelets. We juggled schedules and changed dates so any tests she needed wouldn’t fall while we were away.

We pre ordered and organized medications, re-stocked feeding supplies, filled out special authority forms and worked on a full schedule of physiotherapy routines, blood work, and wrote detailed instructions of care for our family.

Then I went shopping and bought two new bikinis.

One whole week in the sunshine with my husband is desperately what I needed and although I felt guilty as fuck about going… (I mean really, what kind of parent actually goes on vacation when their kid is sick?!?) I knew we needed time to regroup.

After 13 years of not taking time out or taking care of each other, our love bucket has dwindled.

I don’t write a lot about the toll this has taken on our marriage but to put it mildly it has stripped us of a lot.

How could it not?

We have zero time together, we are both running on fumes and our life is constant stress.
We are tired and caught up in blaming each other for not doing enough and life feels like a constant tally of who does more….

Jared has incredible pressure at work- his company does not appreciate the distraction (as they call it) of his personal situation and as with any sales position the pressure never comes off.

He works harder than any one I know. Sometimes staying up all night to finish projects so he has more time to help with Logan during the day. He’s the most committed employee and father and he does his absolute best to balance both but he can never do enough.

Despite all the variables in his industry contributing to a softer year, the focus is on Logan’s cancer and whether Jared can continue to do the job he’s been doing for more than a decade.

Because of this, he is making far less money this year and that makes him feel like he’s failing our family.

We both constantly feel like we are failing.

Logan is not getting better and everything about our life is getting harder.

I fear what will be left of Jared and I when this is over.
I worry that I’ve spent so much time and focus caring for Logan over the past 12 1/2 years that I don’t have enough left to give Jared or Brody.

It tears me apart to think they may be all I have left and I know I have not spent enough time nurturing them.

We knew it was a risk booking this trip but our oncologist was right. Jared and I are functioning on total burn out.

15 months of giving twenty four hour care without one solid night’s sleep and in the words of Gord Downie, we are “Tired as Fuck.”

BUT…..with all that said…..

I am NOT sitting on a beach in Mexico today.

Because, once again Logan has taken a turn for the worse. Because cancer didn’t get the memo or give a shit about all our planning.

And because what the hell kind of a parent or person for that matter, leaves their child in a time of crisis to enjoy a selfish, relaxing and fun vacation when they are desperately needed?

Not me.

A vacation can always be rescheduled. (Even though you may lose a chunk of money 😩)

The feeling of abandonment and leaving your kid when they need you most is something you can never fix.

We just couldn’t do it.
We couldn’t leave Logan while she was this sick and we couldn’t put the stress of caring for her on anyone else.

It’s been a really shitty few weeks.

We’ve been hospitalized, run a zillion tests, and the consensus is despite treatment, Logan is regressing.

Her blood pressure has been ‘all over the map’. Her vomiting was out of control, she has hallucinated, and been off balance and dizzy. Her eyes are glazed over, she’s losing weight and she’s slurring her words.

Although we initially thought her MRI looked relatively stable, clearly the consensus is- she is not stable.

We had a ‘team’ meeting yesterday to discuss our options.

It felt like the worst day of my life. (Although I have so many days like this I’m not sure which one, has really been the worst.)

Dr. Hukin started the meeting by telling us how sorry she was for where we were at- AGAIN.

She said she felt we were now stuck between a rock and a hard place and she really didn’t know what to do.

Not a good start to the meeting.

Basically, she thinks the chemo we are on has stopped working and one of the drugs may actually be causing more harm then good.

She told us she thinks we need to stop this treatment.

She showed us detailed pictures of Logan’s tumour. She explained that although it’s very hard to distinguish how much tumour there actually is, there are clearly areas that look better.

For months Logan was doing better so it’s safe to assume the chemo was working. Great news!

But unfortunately since she’s taken such a down turn it’s also safe to assume it’s not working anymore.

So now what?

Well, to be honest we don’t know.

There are a couple ‘limbo’ doses of chemo left we could give but we aren’t sure if there is any point.

Juliette is presenting her case at the Cancer Agency tumour board this week for a second opinion from the adult oncology world.

We talked about options.

They are very limited.

There is a fairly new chemo protocol that may be an option but we need special authority to see if she qualifies to get coverage through MSP.

We talked about a few clinical trials that are happening the US.

There are a couple of options but we’d need to do some more investigating. It would be very expensive and clinical trials are just that-a trial- a shot in the dark.
Our oncologist shared her thoughts…
Basically she told us she’d try to find the least expensive options but it is usually a fight to get MSP coverage for these types of trials and she suggested bankruptcy for very little possibility may not be what’s best for our family.

The question arose…how far do we want to take this? How much more do we want to put Logan through? How much more can she withstand and what does she want?

Then we talked about stopping treatment all together and letting the disease run its course.

The thought being maybe without chemo, Logan’s ‘quality of life’ (whatever that is) may improve and she could enjoy some time stronger.

The MRI looks stable(ish) but she is in crisis. Her system is in automatic failure.

There is no question whether the tumour will likely start growing again off treatment. The only question is when?

Could we take her off treatment and then give her 3 months to get stronger? 6 months?
Or will she only get worse and regress further and more quickly without chemo?

We don’t know and the risks of doing so are high. It’s like rolling the dice and putting your whole life on red.

But, cancer is not her only issue. Her whole body is struggling. She is needing so many blood transfusions and giving these to her so regularly comes with its own set of problems. Her bone marrow is tired. Her kidneys and liver are over worked, and her lungs are damaged.

How much more can she take?
How much more can we take?

We left the meeting in limbo.
We agreed to an intake at Canuck place (don’t even get started on how we feel about this…) and we will start working with their team for medical support and some respite care. I hate the idea of moving Loggie into the hospice world and again I feel like such a failure.

This week has been hell.

Nothing is good- nothing is working in our favour- everywhere we turn we feel like we being kicked in the gut. (Screw you-CRA as well 😉)

We are trying our best to stay positive- and not dwell on all the shit.

We are doing what we can to find moments of gratitude- (fuck you universe) and we are holding out for the desperate hope of better days.

Collectively we have cried a million tears and we’ve had the hard conversations around what dying might look like.

Logan says she isn’t ready.

She says she has too many people she loves and she’s not ready to leave us yet.

Today she picked up her hand weight for the first time in months. She put on her compression stockings and she’s forcing herself to eat.

We are back at square one and it totally sucks but all we can do is keep going and #rollwithit.

So today, well- fuck it- I’m supposed to be in Mexico- So I’ve decided to make a big jug of margaritas, mix up some salsa, crank up the heat in the house, throw on my new bikini and celebrate 15 years of NOT getting a divorce with my love. Cancer hasn’t taken everything from us and today it can F right off.❤️

Jared says having a kid with cancer feels like trying to live while having a gun pointed directly at you.

The revolver has six chambers with three bullets loaded into it and every once in a while the gunman pulls the trigger.

You pray to hear the click.

You pray if the trigger gets pulled and a bullet is released you will be quick enough to dodge it.

I feel like all we’ve been doing this week is dodging bullets.

Logan has not been well and for lack of better words, it has scared the shit out of us.

She is two weeks post chemo and has been feeling pretty rough since we gave her treatment. Some weird symptoms had started before chemotherapy and since she was progressively getting worse as the days ticked by we chopped it up to side effects of treatment.

But as the days passed and the chemo should have have moved through her system and she wasn’t getting better we feared something else was very wrong.

I should have knocked on wood when I said I didn’t want to be in the hospital the first week it opened because here we are.

Nausea, vomiting and a sudden high blood pressure (what!?!? her problem is usually very low BP’s 😳) had us worried. So, despite knowing opening week was going to be a gong show I was forced to bring her in.

She hadn’t slept for 3 days (despite meds to try to force her) when the hallucinations started.

“Do you want to get matching outfits with your boyfriend?” She asked me.

I gasped.

“Do you know who I am?”

She was puzzled and disoriented “You aren’t Tayler are you?”

I started to cry.

“No Loggie, I am not Tayler, I am your mom.”

It didn’t phase her.

She was so confused.

She proceeded to tell me we couldn’t park our car in the spot we were currently in because Brody hadn’t put any money in the meter yet.

We were still in her bed.

I panicked.

Immediately, I called the oncologist on call and we were admitted. (More or less this is how it went down- I’m going to leave out all the drama of getting admitted to the new hospital on the first day or sleeping on the emergency room floor- or having a new nurse who couldn’t access a port or finally getting into a room after almost 24 hours to find the door wasn’t hung properly and didn’t close. Let’s just say the new hosptial is shiny and new and a total upgrade- which it absolutely is. 🙄😉)

We ran the full gamut of ‘to be expected’ tests and then added a slew of new ones just to be sure.

Check her kidneys ✔️
Check her liver✔️
EKG to check her heart ✔️
EEG to make sure she wasn’t having seizures✔️
Cortisol test ✔️
Meeting with endocrinology team✔️
Consult with cardiology✔️
Blood cultures✔️
Urine test ✔️
Two bags of blood ✔️
IV fluids✔️
New anti-nausea medication regimens✔️
Full neurological exam✔️

Nothing improved, but nothing stood out.

We needed an MRI but the new machines weren’t available or up and running at full capacity.

Thank goodness our oncologist is ‘Bobby Big Wheels’ around here.

She ordered the scan as an emergency and we were admitted as the first patient to stay in room 116 on the new 8th floor of BC Children’s hosptial while we waited.

We were greeted in the clean and cheery new space by our favorite, familiar, yet totally frazzled nurses (it’s been a week of growing pains for everyone). We were given a handmade quilt covered with owls as a gift.
It made us smile.
How fitting for the ‘wise’ ol’ veterans we are. 😉

Twelve and a half years, 3 oncology clinics and 2 hospitals later, so much has changed- except for one thing.

Cancer.

Cancer has stayed the same. It has always been relentless, nagging and such a damn dictator. I guess it didn’t get the memo that it was supposed to get a fresh, clean and cheery overhaul along with the new space.

We finally had our MRI in the fancy updated machine and after a few hours we got the results. Waiting for them was physically painful. I broke out in hives.

My nurse came to visit- our doctor- and the ward doctor. We talked about the possibility of shitty results and collectively shed a few tears.

Based on Logan’s symptoms we were all absolutely sure the scan was going to come back confirming our biggest fears- We were sure today would be the day we faced a bullet we couldn’t dodge and we wouldn’t hear a click.

Loggie was clearly agitated and worried about the results so I talked to her about the ‘what if’s’

Brody had a total breakdown and told me he hated this life and how he never feels happy anymore. Then he bawled his face off and told us how sorry he was for even having his feelings.

Jared and I snapped at each other- it’s been 15 years of marriage this week and almost 13 years of cancer. Just so you know, it takes a hell of toll on the partnership (another blog)

What is next? How will we get through it?

We all wondered and tried to prepare for the worst.

“Be strong. Don’t fall apart. #rollwithit” my inner voice was on repeat.

We started talking about an invasive and super risky surgery and clinical trials showing promise (for a mere $400,000😩) in Alabama when Dr Elaine reminded us not to futurize too much.

Dr. Elaine is the ward doctor in oncology and the sweetest person you’ve ever met. She literally is. Her voice is soft and her energy is so loving and compassionate.

After she left the room and considered our conversation she came back to apologize for using the term ‘furturizing’ (which I’m not even sure is a real word)

“I thought about it,” she said “I futurize all the time and I don’t even have close to what you have going on. It probably wasn’t a very compassionate thing to say.”

I told her how I loved her word and how it jolted me back to the moment. Exactly where I needed to be.
It was the right word. It was what I needed her to say. I told her I appreciated how she intuitively knows how to navigate this unknown territory and how she is doing a great job even when she is unsure.

Then I shared with her how Logan had told me she was realizing her own limits and how she was also futurizing.

“We all do it” I told her “Even when it’s not helpful.”

I realized how ‘futurizing’ although not always helpful can give us the tools to prepare for the unknown and give us the courage and permission to express our personal wishes.

“I’ll do whatever they want me to do Mom. I’ll even attempt the surgery if it is my only hope.”

Logan paused and looked directly at me….

“Unless the doctor tells me there is a good chance I will wake up paralyzed. I really don’t want to live like that.”

Then she started to cry. (Which almost never happens)

“Mom, I want you to know, I’ll suffer through almost anything but if I have to be stuck in my body and can’t move and you and Dad and Brody have to take care of me like that, I want you to know I’d rather you just let me die.”

Elaine and I both cried at the thought.

“I just don’t want this for you guys.” She said.

The most compassionate words she could have ever said is exactly how I feel.

We can’t change the way things are in our lives but I just don’t want any of this for us either.

Anyhow…..

Thankfully the MRI came back and jolted us out of our slump. Preliminary results show the tumour looks stable.

Phew…..😩😩😩😩😩

They reminded us these results are preliminary and they need some time to do a full assessment and comparison. They need to really look at the scans if they want to be 100% certain but the initial impression is there doesn’t seem to be a dramatic change in the pictures.

You have to understand, Logan’s tumour is not growing as a solid lump but rather crocheting it’s fibres through healthy and damaged tissue.

Without physically cutting her open and looking at what’s going on all we can do is compare her scans when in reality we (or even the best doctors) aren’t really sure what we are looking at.

A slight change which could never be measured on an MRI could cause a big change in Loggie because of the crucial area in her brain where the tumour is infiltrating.

We’ve been told to remember the picture is one thing- clinically how Loggie is doing is most important and how we measure progress.

They asked us to give them a bit more time to have the scans reviewed and the option of having few more doctor’s opinions weighing in before giving us the final report BUT the good news is there is no new lump in another area of the brain which is what I think we all feared the most.

Bullet dodged.

This means we should feel better and somewhat relieved but simply put- we don’t.

Probably because this sudden setback has been a reminder of what we know is coming down the barrel.

It is a reminder of the hell we likely face soon and how valuable and limited our time together is.

It has awakened us once again to how quickly things can change and how hard this is on each of us not just Loggie.

Childhood cancer is a family disease.

It has also reminded us that the gunman still has his finger on the trigger.

The toll cancer is taking on Logan’s body and each of our souls feels unbearable at times.

The ups and downs- the fear and hope- the going from the worst case scenario back to accepting our current reality as good enough is hard and unfair and exhausting.

But it’s also all we’ve got. (#rollwithit 😩)

I told Logan I don’t want to live without her and that is my absolute truth. So with those words comes the responsibility to accept where she is at and all that comes along the bullshit- that is cancer.

The plan is we will spend another day here getting more IV top ups and we have a few more tests and assessments and meetings with doctors on Monday.

Logan’s vomiting is now under control and we are starting to see some low blood pressures returning. 🙌🏻🙌🏻

She’s getting extra fluids and electrolytes and we’ve started a new medication for sleep and nausea. She’s improving and it seems her system is being reset.

This ride on the emotional rollercoaster seems to be returning to the station and we can’t wait to jump off.

It’s hard to live like this.

It’s hard to face the fear that at any moment the trigger could be pulled and we won’t be lucky enough to hear the click.

It is hard to know whether we should be relieved or happy or content because we dodged a bullet today or terrified and fearful because we know there is another bullet in the revolver and the gunman relentlessly continues to point that f’ing barrel directly at our life EVERY. SINGLE. DAY.😢 ❤️

The thing about trying to live through cancer with our heads held high, is we spend so much time rising above that we disconnect from being on the ground.

When your life is cancer, (as much as we try to pretend it’s not) you constantly have to make a choice.
Allow it to break you or allow it to be a catalyst for strength.

Period.

To choose the latter and walk the road of courage and bravery means practicing the very thing we fear the most.

Disconnection.

Ironically, being strong means you have to find a way to protect yourself from the hurt, fear, sadness and reality.

It means not letting yourself go ‘there’.

It means making a conscious decision to know when to shut down and turn a blind eye.

It means building a hard shell around your soft heart and not allowing the pain to penetrate.

We may try to call it ‘self care’ but let’s be honest, it is protection mode. Those of us who have a child with cancer, or who are living with cancer ourselves, know it well-

Disconnection is full blown survival.

It’s how the unfathomable becomes tolerable.

Honestly, I see the whole world in a state of disconnection right now. We listen, we see and we process all that we know deep down is unacceptable but we don’t allow ourselves to feel it.

We don’t feel it, because feeling things has become so sacred and protected that we fear what our own emotion will bring. We don’t feel it because so much of what’s going on is wrong and we don’t think we can change any of it. We don’t feel it because we’ve been told weakness is not valued.

We fear feeling when we think nothing will change so simply put we file away our pain, outrage, anger and fear and we do our best to stay strong and be positive.

Trust me, I get it. I live it everyday. We yearn to be uplifted because so many of us struggle to accept this life for what it is.

Then, the unthinkable happens and someone we love dies.

It’s over.

There is no more rational. There is no more protection mode. There is no more rising above and all that is left is the overwhelming sense that we wish we have felt it all so much more and connected at a deeper level.

I struggle with this.

I know it’s ok to not want to ride everyone else’s rollercoaster. I know I have enough on my plate. I know I can’t take it ‘all’ on.

I tell myself this every day. It makes sense.

But then someone dies.

Today it was Gord Downie. Of course, I didn’t know him personally (although I wish and feel like I did). Seven years ago today, it was a sweet little boy we cherished named Callum. There have been countless beautiful souls we’ve loved and lost and tomorrow, sadly,  it will be someone else, maybe our Loggie. Maybe even you or me.

The thing is, we can’t stop the pain. We can’t not feel things and hope we become stronger or at the very least, stay strong.

For it is the feeling and the connection and the grief and the outrage and the joy and bliss and sadness and the pain the makes us the imperfect, beautiful, capable and loving human beings we are.

I cried to hear our country lost someone we love. I cried even harder when I watched our Prime Minister speak  “I really wanted to keep it together but it’s just too hard because this really hurts.”

Yes, It fucking hurts.

It hurts in the gut. It hurts in the heart chakra. It hurts in the future and even though we may have tried to bury it, it hurt in the past.

We know hurt because it bubbles up from the depth of our souls and the lump situates itself like a boulder in our throats- ironically where the words and the feelings need to flow from.

The lump is like a fucking dam.

It blocks. We swallow it down. We appreciate composure. We long for it. We honour strength and resilience and courage. We strive to have it all together.

But, getting gritting and deep and feeling all the BS and accepting it for what it is and then being ‘strong’ enough to release it when we are ready- is far more powerful and healing than just avoiding it altogether.

Listen, I am not advocating we all become soft and whiney and negative.

This is not about that.

I don’t think we need to wear our emotion on our cuff all time (maybe, just a little more some of the time) and I certainly don’t think this gives you a pass to be a needy, complainer or snotty mess.

But here is a thought….

Every once in a while, give your feelings permission- some space to marinate-and then, when you need to, allow those feelings to blow right through the fucking dam because sometimes, on days like today, it really does hurt too much to hold it all back.

No dress rehearsal- This is our life. ❤️