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Gus
Gus' Grey Matters

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Reset that clock

I feel like this would be easier if I could turn it into a meme. If I could just add a .gif of Stacker Pentecost with a bloody nose saying, "Reset that clock," then maybe sharing this, the worst kind of news, wouldn't hurt so much.

But in the real world kaiju don't get fun names like Knifehead; they're called brain tumors. Our wall was chemotherapy, and our jaegers are piloted by oncologists, neurosurgeons, nurses. And like monsters from the deep, the tumors will keep coming until there's nothing even the greatest pilots, or doctors, can do.

Here in reality no one has found t...

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Cause I'm on top of the world, ay

Gus has a beautiful brain. 

We know, because we got pictures on the 29th of August, and lemme tell you: it's LOVELY. 

The gap the tumor left after removal has filled back in, and it looks like a brain should now. 

Gloriously tumor free. 

So it's back to swimming lessons, and hockey, and visits to the rec center, and generally living life without fear, and strain, and stress. 

He's a normal, beautiful, infuriating four year old wit...
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Something pithy should go here

A few weeks ago, on the 19th of May, we had a scare. 

A stop my heart, this is it it's over we're going to lose him, I knew it was too easy....scare. 

A woke up at night with a headache after a week of a number of nighttime accidents and then threw up, just like how we found the cancer in the first place scare. 

On the 20th of May we went in to the cinic first thing in the morning and hoped like hell we were wrong and over reacting. I have never wanted to be ove...
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Today was good. Today was fun. Tomorrow is an

It’s Mother’s Day today. It’s not a holiday we celebrate. For many reasons, not the least of which being the proximity to the anniversary of the death of James Siggs; a man I never knew because he died before I ever met his older brother.

I named my son for him nonetheless.

James was two years older than me, and lived his entire young life in the shadow of diabetes. It claimed him, in the end, because the advances they’ve made in treating it are so recent as to have missed his life entirely.

But I wonder, often, how much of growing up constant...

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"There is no real ending. It's just the place

Four MRIs.
Three surgeries.
Thirty-three sessions of radiation.
Four kinds of chemotherapy.
Thirty-three bags of said chemotherapy (infused over ten weeks).
Four inpatient stays. (Two chemo related)
Fifteen kinds of pain killers, fever reducers, anti-emetics, anti-anxiety, antibiotic medications.
Two rounds of hair loss, localized and full.
Four blood transfusions.
Three platelet infusions.
Four audiograms.
Two echocardiograms.
One trip to the E...

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So, chemo sucks. How was your day?

So much has happened since Gus’ MRI and I don’t even know where to start. How about with his vision?

In addition to the audiogram Gus had the same day as his MRI (his hearing came through radiation just fine) we also needed to get a baseline on his vision, just because (and because it’s good to get an exam after the kind of pressure his brain was under anyway). It turns out that in the grand family tradition he has astigmatism in his right eye! Totally unrelated to the tumor!

<...
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This is a child who is kicking cancer butt

His brain scan is clear. Beautifully, gorgeously clear. 

And the gap the tumor left between lobes is filling in nicely with his gorgeous brain.

We'll have the report of the spine later this week, but Dr. V went through it quickly and didn't see anything that stood out and we're not concerned that anything will show up on closer examination. 

So now I can breathe for three months. 

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New Calendar Event
Chemo
28
This event has one date:
• Monday, Jan. 28
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New Calendar Event
Chemo
21
This event has one date:
• Monday, Jan. 21
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