The (wine) glass is always half full

 

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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One comment

  1. Karen Haugland says:

    Your Family is in my prayers. We were at BCCH last week getting Josh’ a hearing checked. It’s a little worse Cisplatin or Gentamyacin? Not sure which did the worst damage. He can’t get over all the changes with all the construction. (I can’t get over the nightmare of trying to park near the North “oncology” entrance). It’s weird, but I’m happy for future Childhood Oncology families that will never know the trials of shared rooms and laundry machines in use. I say my prayer to Spencer’s handprint. And I can’t believe how strong you have had to be. To be fighting all this time. All my heart to you guys.

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