I started writing this blog three times.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But how can we go on like this?

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

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

I am not.

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

I want her to know she is always enough.

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

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

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

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

Joy and struggle can coexist.

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

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

Logan is not well.

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

Another shitty thing about cancer….

It keeps a tally.

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

Two days after the event Logan had a seizure.

Luckily I caught her.

Thank god for Jared.

He caught us both.

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

He never leaves any of us.

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

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

“It’s ok honey….she will be ok”

I sobbed.

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

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

“It’s ok honey….you will be ok”

Logan slept the rest of the day.

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

Jared took my hand.

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

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

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

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

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

I’ve spent the whole weekend in turmoil.

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

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

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

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

I don’t know.

I can’t possibly know.

But we must trudge forward anyhow ❤️

 

 

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

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

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

“Are you happy to be home?”

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

People pause.

It gives them something to think about.

I just smile.

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

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

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

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

Honestly, it is scary as hell.

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

There is no call bell at home.

No breaks.

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

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

Nope.

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

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

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

It has been a huge learning curve.

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

Nope.

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

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

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

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

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

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

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

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

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

BUT it doesn’t seem to matter…

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

The reality is, WE aren’t so sure.

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

UGH.

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

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

He came running.

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

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

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

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

I called the hospital.

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

Fuck.

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

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

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

Trust me, it could be worse.

You too, are doing a fucking GREAT job.

Roll with it.

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

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

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

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

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

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

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

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

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

See, I told you, the answer is long.

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

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

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

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

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

Funny how moving ‘the bar’ gives perspective.

Everything has changed.

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

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

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

I am desperately trying to get into the spirit.

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

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

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

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

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

This part….

The awesome…

Come together…

How can I help?

I am here for you…..

You’ve got this…..

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

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

Time and time again.

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

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

I believe that.

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

It is struggle.

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

Thank you so much for your compassion.

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

On that note, we trudge forward.

Today is our first full day of chemo at home.

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

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

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

So far…we’ve messed up once.

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

GOLD STAR FOR THE LAY’S!?!😩

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

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

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

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

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

We left happy.

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

And so it goes….

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

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

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

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

RIGHT?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

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

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

Returning to this world was hard.

Surreal.

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

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

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

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

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

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

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

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

We had time.

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

 

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

Time is a gift.

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

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

Hope is powerful.

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

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

Hope inspires.

It rallies.

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

Cancer is a journey.

Logan hates when I call it that.

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

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

I forgot.

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

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

There is hope.

 

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

.

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

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

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

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

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

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

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

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

As is Michael Buble, we are so lucky.

I feel so much more compassion this time around.

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

We are all connected.

By the way, there is a food fairy.

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

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

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

Imagine.

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

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

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

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

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

Imagine, acceptance.

 

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

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

I just can’t.

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

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

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

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

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

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

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

Why is this happening again?

Why does Logan have to suffer so much?

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

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

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

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

How much time do we have left together?

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

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

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

It is almost impossible to accept this as our truth.

Only  this isn’t a lie.

It is cancer.

For the fourth time.

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

I cried as they pushed it though her tube.

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

It’s going to be a long haul.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She also had a feeding tube inserted this week.

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

The little yellow nose hose also completely breaks my heart.

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

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

No one wants pity.

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

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

It is ugly and she hates it.

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

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

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

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

But I remember this course, all of it.

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

None of us can.

But, we will get there.

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

But we will.

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

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

Much Love,

J

 

Apparently, there is a storm coming in tonight and we’ve been advised to get ready.

I, however, feel like the storm already hit us months ago. It is relentless and just won’t let up.

We’ve tried to be prepared- we’ve lived through this before- but even amidst the worst of storms we’ve learned no one can ever predict what the force of nature will be.

What started out as minor symptoms we hoped to get under control quickly, have proved to be much more daunting and complex than we first thought.

I forgot. This is how the storm known as cancer usually hits.

Fast, hard, unpredictable and without notice. This time it also hit us from behind.

We weren’t expecting it.

Logan’s blood pressure is not getting better and she has not responded to the now 14 NEW pills a day she takes.

We thought maybe we could help fix things by addressing her heart, flooding her kidneys with fluid, and overdosing her on sodium.

It didn’t work.

Obviously, her heart is not the problem.

It is, once again, her brain.

She is now experiencing vascular dysfunction.

Basically, the vessels aren’t carrying enough blood to her brain and therefore her vessels and arteries aren’t maintaining enough pressure.

The reason?

A combination of problems.

Yes, number one- the one we fear the most.

There is tumour progression and the main tumour in her brainstem is slightly enlarged.

Go ahead- say it, we have said it a million times already.

“Shit!”

Ultimately, what that means is we only bought time since the last round of chemo and radiation and  her tumour was only ever ‘stable’ and not completely destroyed as we hoped it was.

For some reason the word stable never sat right with me. I dared not to say the words out loud but I always had this gut feeling this day would come again.

Yes, we are devastated, completely fucking shocked, and even though this is the fourth time we’ve heard the words ‘tumour growth’ and we shouldn’t be, we are unexpectedly and deeply angry.

However, now the tumour is not Log’s only problem. She has had so much damage since radiation that the new growth of the tumour really just complicates an already nasty situation.

It also means the blame and anguish is spread around. Her cancer is not any less devastating, it is just that we don’t know which problem is worse or what to hope for.

“Why?”
“Why?”
“Why?”
“Why is this fucking happening again???”

My mind won’t shut off. Sleep is becoming elusive. The pit in the bottom my stomach feels twisted and painfully unbearable. All. The. Time.

It is so hard to comprehend this new news because I feel like we’ve done everything right.

I feel like we have learned so many lessons, adjusted so many expectations, listened so carefully and done everything the doctors have told us to do. We’ve learned to accept so many unacceptable circumstances and move the goal post and for some reason I thought that would be enough. That maybe we’d get lucky, get a pass, that god or the universe or who ever would side with us and that the cancer wouldn’t come back.

That is what karma is isn’t it?

Be good, do good and good will come back to you?

Hasn’t Log been good enough? through enough? Hasn’t she tried hard enough? Taught us all enough? And shown enough courage? Haven’t each of us?

Plus, eleven is supposed to be our number. It’s just not fair….why would she relapse at eleven years?

Fuck, none of this is fair and even though logically I know none of the above questions matter or even make any sense, I am still asking them over and over again because deep down I still feel like I need an answer.

Our oncologist is being optimistic.

She has pacified us with her knowledge and expertise. She has told us she is not 100% certain the new growth tumour is big enough to be responsible for all of this.
We hope she is right because Logan’s decline has been so sudden. To think it could be tumour all on its own is very scary.

She thinks something else must also be contributing. Something we are missing and she’s looking. We are doing all the tests she asks us to do.

But what could it be? We have no idea.

We are just clinging to this theory as a little bit of hope at this point.

Apparently, in addition to the main tumour there is a small spot in another very sensitive area (right obex ) and signal abnormality extending into the pons.

We are trying not worry but couldn’t help and ask what exactly the new signal abnormality could be?

Could it all be tumour?

Yes, we were told it could but it could also be brain damage from treatment. We won’t know without a biopsy but there is possible further radiation atrophy.

Neither sounds good.

One just sounds more treatable than the other.

We don’t know for sure and won’t until we see how things progress but we’ve been told it’s likely combination of both damage and tumour and it’s a bloody mess.

Now, we don’t know what to wish for….

And we really don’t understand what this all means?

Logan feels terrible and it seems like we are once again paddling up shit creek.

Juliette (our oncologist) called tonight and briefed us on the current plan of action. We angrily walked out on her last week and hadn’t spoken since then.
It’s not her fault, and we know we need her help.
We know we need to let go of all this anger and our emotions are just bubbling from a place of fear but we are scared and hearing all of this seems like too much to process.

I apologized to her tonight for my anger and she apologized for not listening to us the way we needed her to and then we let it go and talked  about a plan.

First off, she said we need to get Logan’s vomiting, blood pressure and symptoms stabilized and we need to do so as quickly as possible.

Second, we need a plan to address the growing cancer and if possible the damaged parts in the brain causing all this trouble.

She referred us to a cardiologist and on the weekend we started yet another new medication. It is used for vascular dysfunction as a ‘rescue’ to tighten the muscles around Logan’s veins and keep her blood pressure up.

We are also giving her three to four litres of fluids a day to help increase the pressure. She’s taking sodium tablets, additional blood pressure meds, wearing compression stockings and we are trying to get her out for a couple hours each day for a bit of exercise.

An angiogram of the brain has been ordered to rule out the possibility of a stroke.
Logan’s face has recently started drooping and at times she has been unbalanced when she is walking.
The fear is she could be having ischemic attacks (precursors to a stroke)
Our oncologist thought it would be a good idea to start giving her a preventative dose of aspirin until we know for sure.

Next, she WILL be presented at the adult tumour board at the BC Cancer Agency this Friday.
After a gentle nudge, Dr. Hukin agrees it would be a good idea to get a second opinion on treatment options. The idea of fresh set of eyes gives us some comfort.

She will also request to see if Logan’s previously frozen pathology samples could be looked at on a molecular level. Her tumour may have changed since radiation but it will be a start to find out if Logan could be eligible for any of the new genetic research that is rapidly unfolding including that in which Dr.Sorenson/ Dr. Rod (the Dr. from the video below) have been working on.

We have a referral with a new neurosurgeon at VGH and although this initially worried us, we now understand it. Loggie is getting too old for all her of procedures to continue to happen at Children’s Hospital. Apparently, her surgeon Dr. Steinbok, is also getting too old.
He is operating less as retirement approaches and thus decided it might be a good idea to add a new member to our team.

We will meet with this new surgeon in the next couple weeks to get his thoughts, and then discuss the plan with Dr. Steinbok to see what he thinks. It’s not a big rush, as we’ve been reminded surgery is not currently a viable option that is ‘on the table’ right now.

Nothing, realistically, is a viable treatment option until we get her stabilized and feeling better and stronger.

She isn’t strong enough for much these days and is getting weaker as the days go by. She has lost about 15lbs. She is taking between 3 and 5 doses of anti-nausea meds a day. She’s not eating much. She’s slurring some words, having more trouble swallowing, more intense headaches and is just so darn tired that every day small tasks are taking an obscene amount of effort.

We spend a lot of time in our jammies.

 

It really sucks. We’d rather be on a beach, or at least planning a trip to a beach.

We are angry and we are trying not to be angry all at the same time.
We know this is no ones fault and at the same time having no one to blame is one of the hardest parts.

We have been so lucky, and we know it.

We had so much progression free time- travelled the world, celebrated milestones, but somehow….

it just doesn’t feel like enough.

Logan is doing her best to plug along and stay strong but mostly she is just sad and frustrated with her lack of freedom. She hates being held back and is discouraged with her attempts to go out for a couple hours per day. These excursions make her so exhausted she usually needs an afternoon nap just to recover.

She’s tired of Netflix, of colouring in her swear word colouring book, spending all day with her mom and she is so damn tired of sending snap chats to her friends while laying in her bed.

She desperately wants to feel ‘normal’ again.

I am thankful to her friends Dani and Taylor for getting her out today and for coming last week as well.

You guys are exactly what she needs- friends, love, and a solid medical plan.

We know it, and we are working on it.

A plan to feel better is our only focus.

All other plans are on hold. There are currently no big trips planned- no amazing adventures on the horizon. No getting up early or staying out late. The calendar is not full of highlighted commitments and we aren’t saying yes to many activities.

For us, right now, it is about hunkering down. It is about the mundane, every day, repetitive, same ole’ routine of trying to get these cancer symptoms under control.

That is it. Nothing more. Our circle is small and we aren’t feeling very social. I apologize if you want to help and we don’t respond. Quite frankly, we don’t know what to do either. We just need some time, and when we finally regroup we know you will be there for us. You always have been, we love you and it is not lost on us.

But, for now, we just need down time to regroup because even with our reduced schedule, lack of activities and our 11 years of practice this ‘life all over the map‘ just doesn’t seem very easy to manage these days.

Basically, we are just barely holding it together, grasping, and trying to keep the blood pressure up, the puke down and the hope alive that this storm will pass very soon.
❤️