Saturday, December 15, 2012

Generosity + a reframe

Greetings All,

In light of the ghastly news that's consuming our networks right now, I wanted to start with the super awesome stuff.  The news we have of connectedness, reaching out, and how impressive and kind others can be.   

Some people that I've been close with for years (former students, and parents of former students) have been instrumental on getting the word out about Amelie, and making themselves available to facilitate donations to the Operation Ameliorate  fundraiser that my sister had set up.  I've been really hands off (and will continue to be) because it's not our style to look for handouts.  However, my sister and many friends have noted that if people want to help, it's rude not to let them.  Fair 'nuff.

So a local restaurant in Belleville (where I teach) donated a $1000 to us, to help with all the assorted expenses that are coming at us.  We went and accepted the check from them tonight, and took this picture to commemorate it.

Their generosity, considering that I have never met them before today, is staggering.  They heard that a family who has touched the community (their words, not mine) was in need, and they did what they could to meet that need.

So, I hereby have a favor I am asking of you.  This was not anything that anyone asked me to do, but paying it forward/back/sideways.  If you are wanting to head out for a meal, head into Belleville and eat at the Bayou Grill.  Their menu is here.  Go grab a meal at their place, indulge in your carnivorous ways and glorify your taste buds.  When you're done, ask to talk to Brian and tell him thanks for helping us out.  


Like I said, no one asked me to do this, but feel like I need to help spotlight the good things in light of how much awfulness is out there on days like today.

On to the rest of the stuff we wanted to talk about tonight...

Shel and I have been reading all the words of support, love, excitement and everything else that can be named and labeled from the MRI results on Wednesday, and wanted to lower everyone's expectations a bit...or at least put them in a file and put them away for later.

The MRI results were great.  Amazing...but they do not mean that Amelie is done with her fight.  This was a test to see if the chemotherapy was doing it's job, and it is.  If the cancer had come back in light of the chemo, then we'd be in really, really sad territory.

So, where are we going from here?

  • Amelie starts round 4 of Chemo on December 27th.  She'll be admitted that day, and be in the hospital for the regular 4 day stretch of chemo, unless things go haywire somewhere.
  • They are switching Amelie off the cisplatin that is harming her hearing.  The chemo drug that they are switching her onto is slightly less effective, and HUGELY harder on her blood.  But it doesn't attack the hearing, so they're going to switch to that.  
  • Amelie's blood counts are steadily moving up right now.  They're going to keep her off the vincristine boosters that they've been giving her on Wednesdays to keep building up her blood before we start on the next round.
  • My sister got a ball rolling inside MESSA (my health insurance provider) to review the denial for the stem cell rescue that Blue Cross/Blue Shield denied us from having access to.  Apparently, denying approval for a procedure that could possibly help an insanely cute and sick 2 year old might possibly be the kind of press they don't want.  Hmmmm....
  • Amelie's bones really hurt right now because of the Neupogen that she's taking to help encourage white blood cell development.  They said it makes people ache in their bones.  She's definitely feeling that right now.  We've been holding her for most of the last three days, and she doesn't want to walk anywhere.  Not like any of us are going to complain about a little cuddlebug wanting to sit with you.
  • There's probably more, but I can't think of anything.  If so, I'll add it once Shel reads this.
So yeah, things are bobbing along over here.  Amelie is getting prepared for round 4 that will start in 12 days, and we're settling in for an uneventful Christmas season.  

Hope all is well with you and yours, and that you can reach out and make some new/strengthen old connections this month.  I keep thinking, in light of the horror in Connecticut, that the more disconnected we are as people, the easier it is for things like this to happen.  Between the nightmare of the hate, fear and anger that is spewed at the state and national political levels right now, I can't help but think that we all just need to stop, spend more time connecting with each other as humans, and look for the our common humanity.  It's so much harder to hate someone when you can see their obstacles, their struggles, and their successes.

Night all.