Monday, May 19, 2014

1/24th of a second....

Greetings All,

Been waiting to do this blog post until things were confirmed.  As Shelley said to me last night, my blog posts have always been informative, and not alarmist...and no need to break that pattern before things are confirmed.

(there's a lot of medical stuff about to be spilled here.  Sorry for so much, but then again, if you're reading you want to have it, so I should just shut up here)

So the MRI results are back, and they're profoundly not good.  There has been no chemotherapy treatment for about the last 8 weeks, and the surgery only really took a chunk out of the tumor without anything to get it to stop it's growth, or even check it's progression.  So it has been growing freely for the last 3 weeks while Amie healed.

Before I talk about the MRI results, I have to qualify the results somewhat.  As I mentioned in previous blog posts, they had a bleeding situation in the surgery that was slightly unexpected.  As the surgeon described to us, he was going to avoid being heroic in the surgery, and err on the conservative side,  so he stopped the surgery when the bleed happened.  This left a certain amount of blood in the brain that is causing some pressure in the area, and some distortion in the MRI.  Additionally, they laid down some cellulose foam to stop the bleeding, and that's causing some distortion as well.

When the surgery was completed, Dr. Maher stated that they measured the tumor around 2.5 centimeters, and he was able to resect about 80% of it.  That leaves around .5 centimeters of the tumor in place.  5mm.  Not too bad.

Friday's MRI sees a mass of tumor, blood, and cellulose around 2.8 centimeters.  They can't really tell how much is tumor, how much is blood, and how much is cellulose, but they can tell that there has been significant progression of the tumor in that time.  Dr. Robertson will be back from her once per year vacation next week, and we'll know more after that.

Additionally, (and this is another quite unfortunate and saddening step) there are now indications that her cancer cells have spread to her spine.  This would be right in line with just how aggressive this tumor is.  They can't confirm this until she has a spinal tap.  But she can't have a spinal tap because the blood in her brain is causing undue pressure on things, and increased pressure on the cerebral-spinal fluid in the brain could mean some dramatic leaking of it in the back if they do the spinal we're a bit in a waiting pattern as the Drs. debate the risk/need of the tap.

The plan (which I can't remember if I delineated fully in previous blog posts...) was to go in for all the preliminary focal radiation appointments this Thursday, and then start the focal radiation treatments the following Tuesday.  Due to the aggressively rapid progression of the tumor, they accelerated the treatment plan to tests for tomorrow, radiation on Wednesday....and every weekday afterwards for the next 5-6 weeks.

If they do the tap and confirm that the cancer cells have spread to the spine, then they're going to abandon the focal radiation treatments in favor of full cranial-spinal radiation.  Ugh.

Add onto the radiation treatments that they're going to dose her with Irinotecan and Temodar starting next week, and she's going to be rocking and rolling with it really quick. 

They have now found 12 documented cases of Rhabdomyosarcoma in the brain tissue.  That's out of millions of total cases of cancer.  Out of those 12 cases, 6 died and 6 lived 5 years past treatment.  That's "survival" by the way.  You beat cancer if you live 5 years past treatment.


I was just driving home from the Post Office a few minutes ago and had this thought... Dealing with Amie's cancer is like slowing down a car crash from a movie to the absolutely slowest speed.  In movies, there are 24 frames per second.  I feel like these blog posts, and our lives as a whole, are just happening one frame at a time.

I have this image in my head that we're in a car crash. But we're not really in the car either.  It's like we've gotten ejected from the car, all cut, bruised, scraped....but we're essentially safe.  Now we're just watching, frame by frame....1/24th of a second at a time, waiting to see what will happen to Amie as the crash proceeds without any control over anything at all.

Not the most heart-warming thought, I know...  but apt for the completely and utterly out of control feelings we have most days.

One final thought, as I was having this thought, I realized that I was listening to "Under Pressure" by Queen, with David Bowie, and what an awesome song that is....and also apt for our lives right now.

Ok! Enough wallowing in introspection and sorrow!

This is Amie's incision 1-week post-surgery.

This is her incision almost a week ago.  It's healing well so far.

Anya was acting like a statue.  I loved this.

Anya and Amie had tied my father up.  Papa Moustache must be contained at all times.

One of Anya's first official attempts at watercolor.  I really like it.  She's such an art fanatic.

The girls were playing "Mott" (see picture below) over the weekend, and had created hospital rooms.  Loved their adventure and play...not to mention taking the scary out of the hospital...not that there's much at all.  It's the place where they get to watch unlimited TV!

Next...  the awesome people at Owen Intermediate School.  
Michelle Wagner, a person who is amazingly awesome and I've only had a small chance to work with thus far, messaged me on facebook about her desire to do something for my kids.  She suggested first a tea party where she would arrange for Anna and Elsa from Frozen to host a tea party for my daughters.  I loved the idea, but knew that scheduling anything is often folly and is punished.

So she then asked about buttons with "Team Amelie" on it.  I gave Anya a circle, and told her to draw something with Team Amie in the center and make it look awesome.  She did just that, and Michelle and a friend from another school (Katy Jones from Tyler!) helped out with the buttons.  I've now got a mass of buttons.  If you want some, let me know, and I'll get them to you.  Maybe email me your address and I'll drop them off on the way home from work, or you can come to McBride and pick them up.  Either way, let me know and I'll get you your very own Team Amie button!

 They also got a whole basket full of really fun, amazing stuff for the girls. 
Look how happy Anya is seeing all of that?  So, so hard to get her to smile, eh?

 Amelie was really tired by then, and once she gets tired, she wants nothing to do with pictures.  
But she was really enjoying looking at it.  It'll be wonderland in the morning.

Some last thoughts on this really, really long blog post.

As I mentioned, things are profoundly not good.
But that doesn't mean they are over.
It just means that the next few months are going to royally suck.

Thanks for all the constant support, we really appreciate it....and so does Amie.