Today officially marks the half way point in Loggie’s chemotherapy protocol.

76 doses down. 76 doses to go.

I think today is supposed to feel like we’ve reached some sort of pinnacle and it is all down hill from here.

The truth is, however, it has felt like it has been ‘all down hill’ for so long that I have forgotten what it feels like to think going downhill could be a good thing.

The days just are what they are.

Each day is different.

Some days are ok. Some days might even border good (relative) and some days are just total shit.

I am sure Logan’s medical team think I am crazy, because on the ‘total shit’ days even I know I can be a complete lunatic.

There is no rational when your kid is sick.

I call in to the hospital but my calls are always the same.

“Hi, Ummm, sooooo, this treatment is stupid…..It is totally not working and I hate it. Yes, I know I have to give it time but A. I want to know what your back up plan is because B. This is not good enough and C. You can’t expect us to accept this BS or do this on our own anymore (insert tears and hives). P.S. I want you to know am totally losing my shit”

There is always a long pause, and I am sure a slight eye roll at the other end of the phone but somewhere between those tears, and hives and my stuttering and shaking, and swearing somehow I am always talked off the ledge.

Or at the very least I am pacified enough to be reminded- the goal has always been to hit the half way mark of this chemotherapy protocol and then reassess.

So, now we’ve hit the goal.

We are officially at the half way mark (gold star?? victory lap??) and now I wonder what does that even mean?

I think it means we are at fork in the road.

Do we keep on traveling this path? Or do we take another direction?

Five weeks ago, I would have said with definite truth we would NOT continue doing this chemotherapy after we hit the half way mark.

Logan was not getting better, in fact, I believed wholeheartedly she was getting worse by the day.

No one disagreed with me, which only heightened my fear.

Every visit to the hospital I was encouraged to explore our options at Canuck Place. Our trusted therapist even suggested our sessions needed to shift as we prepared to accept the inevitable and as I wrote in my last blog, I felt like I was having nothing but hard conversations.

Especially with myself.

The start of Logan’s seizures have taken an incredible toll not only on her physically but on all of us mentally.

Not going to lie, this latest blow has been torture.

And

Five weeks ago, I just felt like I couldn’t do any of ‘it’ anymore.

I had a breakdown.

A complete and utter, fall apart breakdown, and so did Brody, and so did Jared.

For me, I couldn’t stop crying.

I must of cried a million tears.

It started in the parking lot of the hospital and I felt like a ton of bricks had been thrown at me.

I was shattered.

It was raining and Logan needed blood work done. There was no handicap parking spot and we needed to take the wheel chair across the parking lot in the slush, and snow and sleet.

I cried as I struggled in the freezing cold to pull that chair I loathe out of my car and stuff her in it. I cried as she had her tests done, watching them put a warm compress on her veins. I cried as I drove home through ridiculous traffic trying to calculate how many kilometres I’ve driven back and forth. And when I got home and finally got Logan settled back into her warm bed I cried as I returned to sit alone in my parked car just to be alone.

It was all too much.

Logan could hardly be moved out of bed. She could hardly eat anything. She was choking on her food, having difficulty with her breathing, and her walking was getting worse. She hardly engaged with any of us and I felt desperate.

Brody was also not his usual, sweet self. He was bitter and angry and nonstop back talking me and Jared was like a bomb with a lit fuse.

No matter what anyone said or did, he seemed like he was going to explode at any moment. Edgy, exhausted, angry, and so incredibly irritable. Honestly, he is usually pretty easy going but I couldn’t even look at him the wrong way and he’d snap at me.

Yep.

The inevitable collapse of The Lay family…..totally happened.

And all I could do was cry my way through it.

“Fuck this” I thought. “Fuck it.”

I didn’t know what to do or where to start.

So, I did what I always do and I started to write.

Not a blog. Not to all of you, but to myself.

I picked up my journal and I started to go back to basics.

How did I want to feel in all of this?

It took some time to figure that one out because obviously I don’t want any of this, but once I found a few words I started taking baby steps to explore what I needed to do and how I was going to get there.

Here is what I came up with.

“Tell Logan the truth. She is dying.”

Oh Fuck.

“Now, tell her how her dying is making everyone in the family feel”

Oh Fuck, Fuck, Fuck.

“Also, take Brody for some alone time and force him to talk to you”(Insert- know ahead of time you are going to feel like an even shittier mom 😩)

“And book a couples therapy session and get our therapist to tell Jared he needs to get his shit together, and maybe focus on what he can do instead of what he can’t ” (Not entirely what happened 😳)

But it was a start.

And so it went.

I called a family meeting.

I told Logan- straight up- I am pretty sure she was dying.

We all cried.

Like, really cried.

Like, actually fucking bawled our faces off.

Thinking about you all reading this I can almost feel judgement. You might think this approach is harsh, or not my right, or negative or like I was ripping away her hope, but I am her mother and I just knew at the very depths of my soul this was the right thing to do.

I had to be the one to tell her.

She needed to hear it. Hardcore. No fluff.

I could see her slipping away before my eyes and I feared she thought time was still on her side when the reality is, we all know it’s not.

She is going into autonomic system failure and the only thing that will help her now is hard work, moving her body, and pushing herself. We need to work against the clock. Buy time while this chemo does what it can.

Her cancer is only one part of her problem.

The doctors all agree unless we do something to help combat her blood pressure issues, the seizures will continue and other health problems will also manifest. Ultimately if we don’t retrain her brain and get her moving it may not be the cancer that she succumbs to. I just can’t bear to live with myself and let that happen.

But I also knew it wasn’t going be an easy task to get her moving.

It had been five months of her being stagnant and I needed to shock her into understanding her reality.

Extremely low BP, plus feeling like crap from chemo and low blood counts combined with the sadness and pity she felt around her would make pulling her out of this slump difficult.

This wasn’t going to be a dramatic turnaround. We all needed to be prepared but I also knew it was imperative we tried.

It was ‘go time’ as Jared put it.

Do something, or give up.

I knew I had to be harsh and push her or there wouldn’t be any quality of life (god I hate that term) in time she has left.

She asked me how long I thought she had to live.

I told her at the rate she was going I doubted she would make her 20^th birthday. Her birthday is June 20th. It is supposed to be her champagne 🥂 celebration this year- go figure.

We cried some more.

Then, Jared, Brody and I each took a turn telling her how her dying was making us feel and how it would affect our lives.

Listening to Brody was the hardest. He basically just cried and begged her not to die. But being the kid he is, he also presented a work out regimen to help her get stronger (and an action plan for our doctors, and the new surgeon at VGH👊🏻👊🏻😉)

It was in this moment, I could feel, we all had a shift.

Logan looked at Jared and I and through her tears she asked “What do I have to do to live?”

Then, she looked at Brody and said “ Don’t worry buddy, I am not ready to go yet. I will try and get stronger”

And so it started.

The very next morning we mapped out a plan to get her up and get her moving and eating whole foods and we made this plan to work around our own realistic goals and terms.

Not going to lie, it has been the hardest, most draining 5 weeks of all of our lives.

And most days, everything has totally sucked

BUT,

We’ve kept at it and there is progress to report.

So much progress!!!!

Logan is now eating 3 meals a day by mouth. She is choosing her meals (always smoothies for breakfast) and I although I am so tired of cooking random shit, she is almost getting enough calories to remove the overnight feeds. Most days she gets only fluids and electrolytes through the tube.

She requires 3000mls of fluids a day to help her blood pressure. Ensuring it happens every day is a big task within itself.

Second, we started an exercise routine (otherwise known as the JJB home physio program) and each day two or three times we get her out walking, doing squats, and lunges and using her hand weights. Sometimes, just for fun, we have a dance party.

But, regardless of fun, rain or shine, we commit to the walking.

No excuses, it doesn’t matter if we are having a bad day or the weather sucks (which it always does 😩) we go.

When the walking first started she couldn’t even make it from the house to the first lamp post without needing her wheel chair.

The first time we tried to walk up a small incline she needed to sit down on the road twice. She was shaking and crying. Jared and I both had to hold her up.

Now, almost five weeks later, she can do the entire walk (over 1.5 km a day) without her wheel chair and she is now attempting lunges on the sidewalks.

Progress. Yes!

Huge progress considering just over a month ago I told her, and I completely believed, she wouldn’t live for another three.

Now, today, I feel like she could, maybe, just possibly, once again, see better days.

We still have so far to go…

But this is a start.

Most days start out the same. Her blood pressure in the morning vibrates somewhere between 50/40 and 70/50.

It is a two hour process to get her up and enough fluids into her and her meds leveled out so that she is stable enough to start pushing herself to exercise, walk and eat. It is a delicate balance of not pushing too hard while her body is preparing itself. Without enough time and support she can have a seizure and then our efforts for the day are sabotaged. There are times when we are all tired and we want to skip exercise but we do it any way.

The days she does have a seizure are exceptionally hard to stay positive and chemo days are the absolute worst to try and get through but some how we manage to push forward.

Logan is still tired all the time, but I can see she is also trying harder every day and this is what is motivating us all.

I see glimpses of the old Loggie and I feel alive and inspired and encouraged.

Brody is also doing better, he comes on every walk he can and when I hear him arguing with his sister about stupid shit, like who plays ‘that song’ I actually feel happy because there is just a little bit more normal these days in our lives, whatever that is.

The JayRod has taken up a new hobby of making industrial shelving and furniture and he’s also started selling them which is alleviating a bit of money stress. Sales in his industry are such a grind so this is a a win, win.

What I learned (when I listened) is part of the reason he’s so stressed has to do with the additional costs associated with Logan’s illness. He doesn’t want us to have to give up the ‘fun stuff’ we do (who does??🍻) so this new endeavor is giving us a few extra bucks and reducing some of the stress.

We both agree, now, more than ever, our 90 day plan of escape and cool experiences isn’t just ‘a nice to do’, it feels like a necessary part of the treatment regimen.

He’s also decided to join crossfit.

So, again win, win. Not only will I have a super hunky ripped hubby by summer, I think it will be good for his mental health.

Hopefully, fewer explosions all around.

And so it goes.

We continue to try our best- even when it sucks.

The half way point is officially here.

It has been a grueling struggle to reach this milestone and we have literally been clawing every inch of the way but I am proud because we have not given up.

We refuse to give up.

Instead, we are taking a time out.

To regroup.

To recover

and to restore.

We decided to give our doctors some time to review Log’s progress and to discuss what they think moving forward. Maybe they will have new plan when we get back. Maybe this won’t be the half way mark of this chemo but the beginning of something new.

Who knows….. but either way, we as a family need another time out, and a break from all of this cancer crap.

So, we are enacting ‘The 90 day Reid Adkins Program’ and we getting the heck out of dodge. Period.

We are going back to Mexico after Loggie recovers from this dose of chemo (next week) and we are happy our oncologist agrees this is the best possible plan we could have.

She actually cried today when she saw Logan walk into her office without the wheelchair. She hugged super tight when I showed her the videos of Logan lunging and she told me how very proud she was of us all.

She also shared with me that since I haven’t been entirely honest with her about our plan to jet away at the half way point, Logan’s MRI would have to wait until the week we came back from holidays instead of next week before we go.

I got a bit squirrely, but she calmed me down.

“I don’t want you to spend your holiday analyzing pictures and test results. You do that enough” she said, “I want you to have a few cold margaritas, sit in the sun and be with your family. Look at your daughter, she is the only perspective you need right now”

Of course, I cried. (Again)

God, we’ve come along way in our relationship.  I pretty much love her more than life and think she’s totally rad. (This week anyhow 😜)

We are also bringing someone to help us on our trip so we don’t have to juggle everything all on our own and we can come back feeling like we’ve had an actual break.

YES, again…progress. BOOYA!

I am learning I don’t have to do it all on my own to be a really good mom. There are no awards for overachieving and running myself into the ground. (Who knew?)

Auntie Betty has agreed to fly down at the half way point of the vacation so Jared and Brody and I can spend some time together surfing, and maybe doing some yoga.

Loggie is thrilled. Our last trip was great but she said she always feels like she holding us back from enjoying our favorite things.

The truth is…. she is right.

Cancer does hold you back, and it sucks, but cancer also pushes you, expands you, and at times, it also leaves you needing nothing more than a solid, super indulgent, and super fun, release.

We chose perfect words for this year so we might as well live them, I guess.

Adios team,

❤

I find that when I don’t write for a long time, it is because I am in my head.

Generally speaking, I always think too much.

I start a blog and then I reflect…..

“Nope, I don’t want to sound so negative”- Delete.

My hands hit the keyboard again…..

“Nope, now I sound way too Polly-Anna positive and disingenuous”- Delete.

Truth is, I have a really hard time writing when it comes from a place of what I think people want to hear instead of what I know needs to shared.

As the ol’ adage goes ‘the truth that will set you free’ right?

So, here goes nothing.😉

We are entering the sixth month since Logan has been re-diagnosed and for almost half a year now, our world, has been turned upside down and rocked by this new (and so damn old) reality.

There are good days and there are bad days but most of the time the bad days outweigh the good. We’ve struggled to stay positive and hopeful and patient but as the months have ticked by we are finding it harder to do so.

I haven’t written because words are hard to find and they are even harder to say.

The latest setback of Logan’s seizures have really messed us up emotionally. For anyone who has encountered, or lived through seizures, you know how terrifying they are and how suddenly your life feels like you are perched on the edge of a cliff.

Panic.

Anxiety.

Loss of control.

Fear.

Unsettledness.

Worry.

This is cancer. And it sucks.

As much as I would like post blogs making it all look as easy and inspiring as Lance Armstrong did, we are not machines, we are real people who are haggard and run down. This is the fourth time our child has undergone cancer treatment and this time is SO (emphasized ten million times) much harder.

Emotionally.

Physically.

Spiritually.

Not only are Jared and I exhausted from the almost 12 years of caring for, planning around and worrying about someone with cancer, Logan is so tired too. Mentally, yes, but her body is also tired like I have never seen her before.

She doesn’t have the ability to just pull herself together (even for the fun stuff) and although she wants nothing more than to feel better, most days she just can’t.

I can count the number of good days (good days meaning awake and engaged/ all relative) since relapse on one hand, and even though we are doing our best to make each day count, the truth is sometimes the quest to do so is a struggle in itself.

We want so desperately for every moment to be the best they can be.

We worry about running out of time (but are NOT giving up hope). We are yearning to cross off each and every fun item on our proverbial bucket list.

One would think, it would be what you do if faced with possible death. I mean, who wouldn’t want to cross the finish line of life with an array of gold stars for living life to the fullest?

But, honestly I am learning this ‘idea’ just isn’t the way it is in reality.

You take each day as it comes.

You are forced to pick out the good moments and you try not to fall victim to the day’s allotment of shitty circumstances. You move the goal post and hit the pause button. You let go of expectation.

Logan is happiest when she’s snuggled into her bed. Period.

 

She loves it when the world is quiet and she has the ones she loves most beside her. She likes clean sheet day and fresh jammies. It makes her happy when one of us lies with her and watches T.V. She likes a back rub or having what little hair she has left blown dry. Most nights she tries to get me to sleep with her.

She likes to giggle and laugh while we look at our phones. She thinks the filters on snapchat are fun and she enjoys gossiping about the world around her, but she has little interest in participating in it right now.

Chemo is taking its toll, no doubt.

We are in the thick of it.

This cycle has been delayed because her ‘counts’ are just too low to hit her again. We are checking every couple days (and secretly hoping) that the doctors pull the trigger and start blood transfusions. There are pros and cons to doing so. We know giving blood is not a magical cure but somehow it would just feel nice to have a plan in place to help boost her up instead of knock her down all the time.

I am starting to wonder if I am pushing her too hard.

I am starting to wonder if I am pushing all of us too hard.

My therapist thinks I need to do work on accepting what ‘is’ instead of focusing on what ‘could have been’ or what ‘may be’.

I know she thinks I don’t ‘get’ where we are at.

Maybe it is because I try to avoid the conversation at all cost. Maybe it is because when she talks about the possibility of Logan dying, or spending more time at Canuck Place, I talk about the possibility of a POG study or Dr. Toyota using his laser or trying a different more aggressive form of chemotherapy.

Maybe, somewhere on her list of psychological red flags she thinks I am in denial.

But, despite any assumption, I do…..

I fucking ‘GET’ it.😩

Trust me, just because I am not inconsolably breaking down or picking out songs for Logan’s celebration of life doesn’t mean I don’t ‘get it’. I know where we are at.

I live it.

Every. Single. Day.

But instead of succombing to what is in front of me, I am choosing.

Every single f’ing day I wake up and I look at myself in the mirror and I tell myself to get a grip.

I tell myself that all I have is this day.

This one.

I tell my self that even though my life and these circumstances are out of my hands and I feel like I have zero control

I DO!!

I have control over my own thoughts and everyday I tell myself I am not going to let myself go crazy.

I am losing so much, but I am not going to lose myself as well. I am not.

I ‘get’ how people might think I am bananas when I talk about our next family trip to Mexico or our 90 day plan, or selling our house to move to the Okanagan or when Logan goes back to work, so she can start paying some of her own darn bills.

Trust me, I hear myself and I know at this point it sounds far fetched to you, but it doesn’t mean I don’t ‘get’ it.

They, (doctors, nurses, therapists, pharmacists, the Canuck Place people, and everyone else on our healing team) suggest our life is now about ‘living in the moment.’

These words are really starting to bug me.

Almost as much as ‘You just have to be positive and quality of life’.

If you ask me, these statements are pretty loosely thrown around.

Easy to say and sound like perfect words to use, in theory, but in reality, almost impossible to practice.

I am starting wonder if these words are just part of protocol. If healthcare providers are instructed and trained to insert certain lingo at different stages of treatment? How can it be possible they all have the same language?

I, can however, read between the lines.

They think I need to start having ‘THE HARD CONVERSATIONS’.

They think maybe I am living in a bit of a fantasyland, that maybe there is a disconnect and we think Logan will be able to go back to her ‘normal’ self again.

The hopeful conversations that ‘they’ used to have to inspire us are now conversations they fear having just incase our perceived denial is worse than they think.

I can feel the shift in our meetings. Every single person is starting to lean into the hard conversations with us. Even when they try to be soft about it.

Our talks usually now start with a weird pause, drooped shoulder, tilted head and long deep breathe before the words, “Sooooooo, how are things?” Or “I am soooooo sorry to tell you….”

I let them go through the process, because I also ‘get’ this can’t be easy for them either.

But truth is, what ‘they’ don’t realize (despite all their experience and training) is that ALL I do is have the hard fucking conversations.

All. Day. Long.

I have them with myself, with other doctors, with strangers and with friends. I have hard conversations with benefits providers, pharmacists, Logan’s pals, other cancer moms, and my favorite nurse (poor thing, she gets all the recaps) 😘

There are hard conversations with people in my life that just ‘don’t get it’ and never will…and then there are the conversations where I don’t have to say a word and there is just space and compassion making words even harder to say.

I have hard conversations about the why’s? the when’s and the how’s? About the possibility of things getting worse, and about windows of opportunity when things might get better.

I have hard conversations about ethics. How far does one go to save someone’s life?

I have hard conversations with my husband who is feeling trapped at work and in this life. The fear around money and the financial burden of this resting solely on his shoulders. The repercussion of giving up an opportunity for fresh start and a new career hindered by this cancer the fact he can’t fix any of it. All he wants to do is provide the very best for us and he feels like he’s failing. Every. Where. He. Turns.

I have hard conversations all the time with Brody who just wants freedom and fun and is so damn tired of always being stuck at home.

I have hard conversations with long time friends who are now afraid to share their own lives upsets and feelings with me because in their words “It is nothing compared to what you are going through.” (P.S. NOPE it is not- and thank God for that- but life is not a comparison or a competition. Please indulge me with your normal stress’ I really need it.)

I have hard conversations with people who I refuse to even engage in conversation with.

But the hardest conversations I have are always with Logan.

Yes, we talk about the possibility of her dying.

How can we not?

This fear is always right there on the surface behind every headache or weakness, or now, the worry of every seizure. We think about it as we channel our energy hoping for the cure with every dose of chemo. Thoughts around it linger every night as another day ends and we wonder how many we have left.

Logan doesn’t want to die. Period.

She has told me she isn’t ready and still has so much living she wants to do but she also fears what life looks like the way she is now. She fears being a burden for the rest of her life.

We tell her she isn’t a burden, but she sees us struggle and feels the fear we have (but don’t say) about this being our permanent reality.

Logan isn’t much for talking about her feelings so when she opens up, those are the REALLY hard conversations.

I am used to speaking for her. Most of the time she asks me be her voice for everything. She trusts and expects me to step in and advocate for her. She has a very hard time getting her thoughts from her brain to her mouth, so, most of the time, even if she wants to or needs to; she just says nothing at all.

She keeps a lot of feelings bottled up for fear of judgment or misunderstanding.

Listening to her struggle to articulate how bad she feels for things she can’t control or hearing her fears and sadness, knowing there is nothing I can say or do to make it better is heart wrenching.

Conversations between us where the tears outweigh the words are some of hardest conversations I’ve ever had.

Logan is strong, her spirit and her will to survive is fierce despite her bodies fragility. She doesn’t want to give up. She is not ready and she is very clear in that.

We have the hard conversations but we are doing our best not live in them every single day.

We ‘get’ it.

This is NOT over our heads.

And just because you see us smiling or joking, or propping her up in a wheel chair at a hockey game, or lugging her around the mall to buy new outfits for our next holiday doesn’t mean we are in denial of where we are at.

It means that despite not having one single say in any of this, despite feeling trapped and ripped off and scared as hell, we do have choice.

We have a FUCKING choice- (hear me universe???) and as a family we are choosing how we going to face Loggie’s cancer and how much power we are going to give it.

We are CHOOSING to find pockets of goodness and fun. We are CHOOSING not to let it break us. We are CHOOSING to continue to make plans, to book holidays, to renovate our house and to freshen up our space and move forward. We are CHOOSING to laugh instead of cry, who we want to surround ourselves with, what feels good and we most of all we are CHOOSING how we need to be supported during this very messy time.

At this point, all we have is choice so guess what?? We are grabbing it by the balls.😜

None of us—have a choice in when we die, but we ALL have a choice in how we live.

This life, our life, and this fourth fucking time facing cancer, can piss off, take a hike or at least know it’s place.

This is strictly on our terms. Period.

It is Logan’s terms and however she wants to rock out her time here, is how we as a family will roll with it.

So, screw the hard conversations. They aren’t hard.

They are just, simply, necessary.

I learned a new word this week- learned, as in felt (I am starting to think that feeling is only way to learning?).

Embrace.

I’ve added it to our motto.

#Embrace. #rollwithit

So, screw the hard conversations, for right now. We are far too busy trying to live life right now to dwell on them. ❤️

 

 

 

It’s all in the way we look at things….

It is true, we all have a choice.

Optimism or pessimism?

Is the glass half full or is it half empty?

Today, I am trying to SO damn hard to be an optimist.

Last night, I felt like a crumpled mess of disappointment and negativity and a total pessimist.

Deflated.
Angry
‘F’ this’
Sad

MRI day has always been such a tough day- this one was exceptionally hard.

We needed a win.

But instead what we got was more of the same.

Life is like that, you don’t always get what you want and it always comes down to you to decide how it’s going to be.

(Life all over the map lesson)
Your own perspective is always your own reality.

The MRI results show no change from Oct 26.

Sigh 😔

On hand this is great news, right?
Stable-
Status quo-
Not worse-

But on the another it is….well….just shitty.
Not better
No improvement
Questionable response
A whole bunch of signal enhanced abnormalities still lighting up the scan.

But the scan is only a picture.

We also have to take into consideration how the patient is doing.

Logan had a full neurological exam done yesterday.

It’s been about 6 weeks since we’ve last seen her oncologist.

The result- also a question mark?

Some things have deteriorated.

She has less reflexes in her feet and ankles. She has tremors in her hands and there has been a decline in her dexterity and fine motor skills. She gasps more frequently for air, her voice is softer and she has less movement in her tongue.
She is also having a bit of trouble with bladder sensation.

So that all sucks.

Top those symptoms off with a scan that doesn’t look any better, a kid that is tired all the time, who is still not eating and drinking enough to sustain herself, and it’s easy to spiral into a really dark place and think only the worst.

We were told this chemo was our best chance of shrinkage and improvement.

We were told we’d hope to see some of these improvements in about 3 months time.

We have clung on to those words for dear life.
Yesterday, we felt desperate for good news and today, here we are.

No further ahead, no further behind. Stagnant is starting to feel very stifling.

We want better than this.

We NEED better because we don’t have a tickle trunk full of possibility and cutting edge treatment just waiting to be tried.

The truth is we don’t have many cards left to play.

No more radiation, a huge question mark around surgery (last resort, huge risks and possibly no better results) and not many other chemo options- maybe none better than this. Yes, we’ve tried naturopathic treatments (and are using a few now). We’ve had healers here, done reiki, made her eat dried roots, and handfuls of supplements. Shes taken classes on mindfulness and visualization and we’ve thrown caution to the wind and lived in the moment. We’ve given back, raised shit loads of money for research and tried our best to do everything right.

So, yes, damn it- we want more

But that is not how this works.

There is no tally sheet because of what you’ve done right. Cancer doesn’t work that way and it is hard to accept having things out of your control.

 
It is hard when you don’t get the great, promising news you long for. It is hard not having a miracle to share (yet).

BUT

This is where we are at.

So, in the spirit of never giving up and being optimistic and drinking from a (wine) glass that is always more than half full (#truth) 😉🍷

It’s not all bad either

Maybe, this is just what progress looks like for us right now.

A pause.

In tumour growth
In time
A pause to strengthen, to heal, to accept and to just be- in these moments, together.

All good thing come to those who wait….

Isn’t that how the saying goes?

The scan is not worse- so maybe chemo has stopped the growth. Maybe it will just take some more time for it to regress. Maybe that will happen as Logan gets stronger. Maybe this chemo will take longer because it is not such a shock to Loggie’s system.
(God only knows her counts have been better than expected.)

Maybe things will only get better from here?

Yes, we could give up.

Switch to another chemotherapy or try a different regimen but we’ve decided not to, just yet.

Our oncologist is remaining hopeful about this one so that means we are too.

We are focusing on baby steps.

There have been some small improvements.

Her blood pressure isn’t terrible all the time and she seems to be responding to the BP medication better.
Her swallowing has improved.
She’s walking more on her own without the wheelchair and her nutrition is better. She has finally started to eat a bit by mouth (2 days ago she ate enough not to use the tube).

And so it has been decided to hold steady.

To be patient and to trudge forward and carry on with this chemotherapy, for the time being.

The plan is to see her oncologist more often for neurological assessments. Likely, every couple weeks.

If things get worse, we will adjust some of the doses of her chemo to see if any of her deterioration could be side effects from treatment. If that doesn’t work, then we will stop this treatment and come up with a plan B.

The current goal- 2 more cycles of this chemo and then another MRI in April to reassess.

The current hope- we are making the right decision.

She’s had 4 doses of round 3 chemo since last night. She has 13 more to go over the weekend.

Let’s pray….

Third time’s a charm ❤️❤️

 

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I wrote a letter to myself in India.

It was part of an activity that we did in the a fresh chapter portion of our trip. It was an opportunity to ‘get real’, say a few words of encouragement, and give myself some perspective in my everyday life when I got home.

My instructions were to seal the letter and the facilitators of the program would mail it to me at some point- months after I arrived home from the trip.
I was assured this letter would likely arrive when I needed to read these words the very most.

Of course, it came the day we got home from the hospital.

“Hey you,
I bet this letter is going to arrive just when you need it most. It is just a reminder of India, of all the connections you made that led you here and of all the shit you’ve already sorted though in your life. It is a reminder of how you are exactly where you are supposed to be today and every single day. Remember that.
Acceptance is tough.
But Jen you need to LET IT GO. You are so much happier and a better version of yourself when you accept things for what they are.
Don’t overlook the good in your life and focus on the bad- it only fucks you up and distracts you from being in the ‘flow’ and attracting what you want in your life.

You are fun and smart and worthy of happiness despite all the shit. Jen, you got this! It is your life too and it matters.

Be grateful, say I love you to those who matter most and try to stay in the moment because if you miss it you will never be able to get it back.

I love you. Take care,
Yourself.”

 

Today, I am trying to take my own advice by not focusing on the bad but rather looking at the good.

We are discharged and are now at home.

Logan’s blood pressure is slowly coming up and and she is starting to feel better.

We are pretty sure the medication is working.

All the tests we had done (and it feels like we’ve had a zillion) showed there were no new underlying conditions to worry about.

Her heart is good, her blood work is stable, she isn’t going into adrenal failure and her organs look to be holding their own. All good news.

And there is good news on her MRI too.

The area we are most concerned about, the medulla, where the biggest portion of her tumour is looks stable.

There is no enlargement, no giant cystic cavity filled with fluid cutting off the flow to her brain. Yes, this is all good and we are happy and relieved about this news.

But, despite this good news, there is also some not so great news about her MRI.

It is now confirmed that there is some slow progression of signal abnormality moving into a different part of her brain called the ‘pons’.

But before you all gasp with anxiety, I want to reiterate the key word being slow progression.

The report written this week looked at MRI’s dating all the way back from 2012 (when things looked best)- until now.

It’s one thing that hasn’t been consistently happening, reviewing and comparing her previous scans and in such detail.

There are many reasons for this.

Stable in a brain tumour patient means a number of things and not just a picture we take every few months.

It means looking at and analyzing how she is physically and asking the question “Is her body copping with this tumour? Is she feeling well?”

This is most important. Small changes on the picture are less poignant if overall she is doing well.

To be honest, one of the problems we also have when we look at Logan’s scans are they are really hard to read. There is scar tissue, surgery damage, residual tumour, post radiation changes. It is basically like a dog’s breakfast so subtle differences aren’t always noted as being a that big of a panic because we aren’t even always sure what we are looking at.

Alot of our decisions on how we proceed with Logan’s treatment plan and medications are based solely on how she is doing physically and most of the time that is the best plan for her.

But, unfortunately over time things can compound and when we look back at her scans from the last couple of years and we compare all those ‘small changes’ over time, we see an accumulation which is an more obvious one in some areas.

Here is the deal.

It is the best way I can describe it from the MRI report I have in front of me (taking out all the big medical words) and from 11 years of experience.

After radiation and her last round of chemo she had some inflammation for a couple of years and the damage and atrophy occurred, then it seemed to level out and things looked a bit better.

In 2013 there was some activity in a lesion at the right obex, the area of the brain where the fourth ventricle narrows to become the centre canal of the spinal cord. This growth has slowed in the last year, but now, it has slowly extended upward and we are seeing patchy abnormalities in the bottom half of her pons.

This ‘new but not so new’ progression in the pons has been most pronounced in the last 18-20 months since Dec 2014 when compared to her scan in June and most recently this week.

“It is hard to say at this point if Logan’s new symptoms or all her symptoms in the past while are related to this slow progression because she has so much damage and residual disease in all of the brainstem but the short answer is that is pretty safe to say yes. ” (The words of our doctors)

So, now, what does that mean?

Well, basically, we have no fucking idea.

We don’t know what this new signal abnormality will mean in the future or how and if it will continue to progress but yes it is scary and worrisome. No one is more stressed about it than us.

But there is nothing we can do about it.

And here is where all the questions come flooding in that you and I and everyone will all want to ask.

Here is also where all the frustrating answers surface because truly there are no real answers.

No, surgery is not an option in this area or even necessary at this time.

No, she cannot have any more radiation to shrink or stop this.

And No, chemotherapy is not on the table at this point. It is not that dire and it would do more harm than good. It won’t get rid of this.

This is why living with cancer is not black and white and so hard for many to understand. Sometimes, you have to wait even when you don’t want to because you aren’t sure what the cancer is going to do. Sometimes slow growth is better than any treatment and sometimes managing symptoms is all you’ve got.

Living with cancer means having to accept where you are at.

It means knowing at times there will be no answers, accepting there is no magic pill or crazy homeopathic, naturopathic remedy that will make it all simply go away that life will never go back to ‘normal’.
It also means accepting (as fucking excruciating as it is) that what it really comes down to is having the best quality of life (I really loathe those words) you can despite the cancer.

Does it fucking suck?

Yes.
Is it getting harder to manage the stress and the worry about lack of advancements and a cure as the years tick by?

Yes, sometimes it feels like an unbearable load to carry.

But am I hopeful that Logan will feel better again and get back to doing her normal things?

Yes.

We do luckily have some of the best doctors in the country working towards that very goal.

The good news is- she is responding to the new medication for blood pressure and the crazy fluid intake and salt tablets are helping to level her back out to a much better, safe and healthy blood pressure.

She is having less nausea and vomiting. She is eating better and isn’t collapsing or complaining she is so lightheaded she can’t see.

It is all positive and is all that really matters.

If Logan is doing well we will focus less on the shitty parts of her cancer and more on the good parts of her life.

We, and her doctor’s are not worried, that Logan will have an overnight major change or these abnormalities will suddenly explode and something major or devastating will suddenly happen to her without notice.

It is not how her tumour works.

In the past, yes, we have seen some quicker growth and metastasis but overall since radiation this tumour has been fairly stable and we have been able to manage most of her symptoms as they come.

We expect this will be more of the same.

Can we say for certain that if last 18 months has showed some increased progression that in another 18 months we won’t see more?

No.

That is the shitty part of cancer. The hardest part is always the not knowing.

But, I think it is promising that doctors are on top of it and I won’t let them miss a thing.😜

I think it is promising that she is responding to every medication and treatment we have offered her over the years despite any slow progression or any damage from treatment.

And what I think is most promising is that Logan is optimistic and she is focused on getting back to feeling well and pursuing the normal things in her life that she enjoys not her cancer.

She doesn’t want to be sick. She doesn’t want to be held back and she doesn’t want this disease to have control over every single part of her daily life.

Her goal is to get back to her job. She loves the kids she works with and the people there. She wants to hang out with her friends, go to parties, think forward to her next semester in college, visit the Okanagan at Thanksgiving and maybe see Drake on Sunday.

For us as a family, we also want to continue to live a life as normal as possible. We want to continue to plan and execute another family trip back to Asia in the coming months because it’s what we love to do together.

Escape all of this shit.

We want move forward with a few new (and currently secret) big life changes that are on horizon and although we feel a little immobilized with fear today we know it won’t last forever and that the only option we truly have is moving forward.

In the profound words of a wise boy who lived a very full life despite his own cancer,  “Never give up.” Thanks Spence, we won’t.

We have always known Logan’s cancer would never be gone.

We have always known the choices we made to give the treatment would unfortunately, affect her.

We have always known her life would be different than others and for as long as she is alive we’d sometimes need to move the goal post.

We’ve also always been fully aware that for us personally, as her family, we too would continuously need to adjust our own expectations and learn new ways to accept this life for the reality it is.

Nothing changes that.

No MRI report, no new information from doctors.

In some ways, today, is the same as always and although this report confirms what we have already suspected, it doesn’t change anything.

The plan stays the same and this is just another bump in a road filled with pot holes in a life that is truly all over the map.

The next steps are all about getting her feeling well. Getting her BP up enough that she has the green light to get back at life. (Which is already happening)
We have a swallowing assessment booked for next week (any changes in the brainstem can increase the risk of choking and aspiration- we are just ruling that out)
We are having an x-ray done to check her spine and doing some follow up blood work.

At some point in the next couple of weeks Jared and I are going to sit down with her oncologist and talk about the “what if’s” and discuss her thoughts.

We just aren’t really ready or wanting to go there yet because the reality is we already know what she is going to say.

“I don’t know.”

The truth is, none of us do.

So, that leaves nothing else except to take my own advice and try to focus on the good and not get all fucked up over the bad.

And if nothing else- I guess, at least, that is some sort of plan.