Saturday, June 14, 2014

Samson lost his hair too....

This week was a busy week.  I'm in the process of wrapping up school, and all the panic and elation that that sort of thing entails.  I never in my wildest dreams thought I'd be in school until June 19th.  Ugh.

Amelie has no real interest to take pictures these days, for whatever reason.  However, according to Shelley, if you give her the opportunity to take one silly picture, she'll do one serious one as well. 
Here's the evidence to that.

Shelley and Amie got the opportunity to  head to Grammie's place on Friday, while Anya had a full day of school.  She usually has half days each friday at CSA, because they do planning and professional development each Friday.

As some of you might know, Grammie has a massive flower and vegetable garden.  Apparently, the last few weeks have been plentiful to her garden with the heat and wet.

Of course, in Shelley land, you must process and store those fruits!  Strawberry Jam it is!
She made a LOT of jam.  I'd guess 16+ pints of it.  
The girls will eat that for the next 12 months, so it's a good investment of an afternoon.
<edit:  Shelley, ever humble, wants you to know that she only made 8 pints of jam!>

Shelley had an appointment to meet with the couple from Teen Mom this week, to plan out the fundraiser that's going to happen on July 13th.  She said that they were really kind, super-good with Amie, and of course Amie charmed the living heck out of them, as per her usual habits.

Amie loves to tell jokes, and she's been telling this one all week.  
Thanks Janell and Rawlin for providing the gift, and the joke.  
Both were well received and we're super appreciative.

Firstly, I love the picture for a lot of reasons.  She's playing like a regular kid on a slide.  She's happy, and her hair is going static crazy.

However, take a second and look how much hair she has underneath.  
The picture above was shot on Monday June 9th.

The picture above was shot tonight, Saturday June 14th.

What is it about hair that makes things so much more real?  We tie so much to virility, power, and ability in this culture to the hair.  Wigs, rogaine, toupees....we seek to cover up our loss of power.  Or else we cut our hair as a sign of mourning, as a show of change or harnessing our own destiny.  Britney did it, Miley did it, Samson did it.  When kids lose hair (and lose hair again) it punches us in our gut, because it's such a powerful manifestation of illness.

Anyway.  Amie lost all this hair since Monday.  Each day it was just....gone.  They had said that most likely she would lose some around the incision site, but warned that it could be worse.  Looking at the next three pictures will prove that it's worse.

When her hair is down, you still can't see much as far as hair loss.  Scrunchy face still wins.

Medically, it was a normal week for us.  
  • Amelie continues to move around more comfortably, and needs far less assistance in her movement.  That's a total plus. 
  • We're now 1/2 way done with radiation, and Amie continues to amaze everyone with her ability to cruise through what is nightmarish for some.
  • We've got the lumbar puncture to check for the spread of the cancer <with all that information entails> for Wednesday.
As a final note, we met with the Make-A-Wish people tonight at our place to discuss our views on Amie's trip.  After much thought, much weighing the pros and cons of all the things we'd hope she'd get to do, matched with our fears of complications, we've requested a trip to Hawaii.  

There's a resort there that's specifically tailored towards families, and is owned by Disney.  It's called Aulani, and we're really hoping it falls together.  If Amie has no energy, she can sit in one of our laps and we can enjoy the quiet serenity of the waves on the beach.  If Amie has a massive amount of energy, we can swim all day to our heart's content.  It offers flexibility to us, and instant access to modern hospitals if needed.  Let's hope it falls within what they can offer us...

<edit:  Shelley said that I didn't have anything uplifting in this post, and it was too much, so here's an addendum>

I can't even explain, nor do I have the words to do so, to talk about the generosity of all of you over the last few weeks.  Between the BWW fundraiser, gifts that have found themselves to us in the hands of friends and postal workers, or the fundraiser that Shannon threw last week, it's beyond overwhelming.  (In all seriousness, go give Shannon some business.  She's great, and really got the girls to open up to her!)    So thank you all.  I feel bad that I don't have anything witty, funny, sarcastic, or.....  whatever in me for this post.  I've got nothing for today.  I'll go digging for it tomorrow.

More news after we get the LP back on Wednesday...  Hope all is well with each of you!