Friday, May 9, 2014

Buckets and Buckets and Buckets...of information

Greetings All, 

Where's the one place you want to be on a Friday night?

At the Emergency Room you say?


Ok, turning off the sarcasm firehose.

When Anya came home from Grammie's house on Tuesday, she had a good cough, one of those deep in the lungs cough.  Of course, that meant that it was a ticking timebomb until Amie got sick.  Ding Ding Ding!  She's sick. Woo!

A bit of a recap of our week:

Anya's school regularly has culminating events at the end of each major unit of study.  These events showcase the student's learning and focus, and also help them develop presentation skills to adults, help cement learning, etc.

The students picked animals, and then worked in teams to do research on their common animals.  Anya really learned a lot, and is gaining so much confidence in her intellectual abilities, which we can all agree is a massive part of success.  Good stuff!

(This is not shameless pandering, I swear) We cannot possibly be thankful enough to the two teachers who take care of Anya each day.  These two teachers provide such a warm, welcoming, and safe place for Anya to go each day, and give her the shelter from the storm of all this crazy cancerland stuff.  I wish we had something to give them that would equal our gratitude, but this will have to suffice at the end of this Teacher Appreciation Week. (Thanks Churchill and Simon, you rock!)

Amie, as usual, is bouncing back as quick as ever.  Other than the stitches and pressure sores, you'd never know she's not even 2 weeks out from her surgery.  She's doing fantastic.  
(a little comb-over action to cover the wonders!)

We are silly.  Silly we are.  In a train. In a car. On the floor?  Silly some more.

My new-found relative/co-worker bought the kids big old cookies.  Anya loved it.  This is while we were on the way to Grammie's tonight.  

News on the Cancer:  
  • Amie has muscle cancer, in her brain. <Rhabdomyosarcoma> There's virtually no precedence for this, and they're really not sure how it's happening, but they've now DNA typed her tumor and re-examined the biopsied tumor slides from both surgeries.
  • What this means is a new track of treatment, away from what they were doing for Medulloblastoma, and trying to fight it like Rhabdomyosarcoma.
  • We're going to start 5x weekly focused radiation treatments starting just after Memorial Day.  For each of those days, she'll have to go to Mott, be anesthetized, be given 15-ish minutes of focused radiation on the tumor site, and then brought back out of anesthesia.  Those will go through Mid-July.
  • They'll probably also be doing successive rounds of chemotherapy in there as well.
  • Dr. Robertson's exact words were that a diagnosis of Rhabdomyosarcoma would be a very good diagnosis for a kid....if it was where it was supposed to be.  Since it's not, they really have no ability to guess what's going to happen going forward.
  • Yep.  That's about what we thought.
EDIT:  This week also saw tons and tons of Amie recovering her walking and movement skills.  She's healing quickly, and also saw PT and OT.  We've been trying to get a video of her doing all this stuff, but she hasn't been about that yet.  We'll get that going when we can.

Three things fundraiser related, for those of you who wanted to know, as I've gotten lots of requests for information:
  • My sister set up a site that allows people to donate money to us.  Here's the link.
  • My amazing, generous, kind, and giving former student <Jennifer Overholt, yo> who ran the bracelet drive back at first diagnosis is organizing a Buffalo Wild Wings "Dine-to-Donate" event, where a percentage of the food bought at the event is donated to us.  Provided you show the flyer (save it to your phone and show it, or print it out and show it), a portion of your bill will be donated to us.  As you might see, the date for this event is June 4th, and will be at the Buffalo Wild Wings on I-94 and Huron St, Exit 183 in Ypsilanti.  It's on the SW side of the freeway, directly next to the freeway.  See the address on the flyer below.

  • The Link Fund, a company that produces promotional bracelets for fundraising is sponsoring an event on July 13th with a couple from "Teen Mom" and another from "Teen Mom 2".  They're going to do a book signing and a meet-and-greet at the Brighton Mom-2-Mom sale. They solicited stories from families in the area who are struggling, and we submitted our story.  Amie, as usual, charmed them, and they chose us for this event.  This event will be on July 13th, and we'll keep you up to date on it as it gets closer, in case you want to check it out.
More to come on all of that as we know it.  
Whee! Friday night, party time! WOO!