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.