Monday, September 1, 2014

Ferocious gnarly viking teeth...

Good morning everyone!

I got out of the house extra early this morning in an attempt to write this blog post before I engage in some extra geeky fun. 

I’m sitting typing this in a Biggby coffee that just happens to be the first store ever.  It’s directly across the street from the apartment I had in East Lansing in the summer of 1992 through the Spring of 1993, just past where Michigan and Grand River split apart.  Makin’ me all kinds of nostalgic, to be honest.

Our brains are funny and strange things.  Did you ever think about the power of expectations?  If someone says to you that in 10 days, you’re going to have to work at 20 hour shift, you can get yourself ready for that.  You’ll have a certain kind of sick pride that you can get through it with grace and wit…or maybe just grace.  After a 20 hour shift you’re mostly brain dead.  But I digress.  My point was that if you have the warning, you can do it.  Get asked to stay 30 minutes past where you thought you were going to leave on a normal day?  Total breakdown, massive pain in the butt.

The hospital is a lot like that.  You have a general expectation that any time you walk into the building, it’s going to be a 6-hour ordeal.  Some days are much less, some days are longer.

Shelley walked into Mott on Tuesday expecting a normal 6-ish hour day, and found herself in a nightmarish 11-hour extravaganza.   We had been told that our next chemo drop was going to be on Thursday, and the visit on Tuesday was just to get blood counts to make sure Amie was ready for the next round.  When she got there, however, she found out that the protocols for the insurance company had changed, and the specific chemo that she was receiving was now only authorized for outpatient care, with IV Mesna (to protect her bladder) and fluids to continue for 5 hours.  6 hours turns into 11 hours (with traffic), and normal becomes nightmarish.  Good times.

Amie is doing alright.  Her hair loss from last blog post seems to have plateaued for the moment.



You know what’s the saddest thing about it for me right now?  Her stoicism.  She isn’t yelling, crying, screaming, or any other antics, about her hair loss.  She’s taking it in stride, like everything else. 

She said to Shelley the other day, “Mumma, I don’t think I can do a braid across or sprouts today.”  As you can see, she has this fine, wispy cap of hair left…and almost nothing else.  She can have no hairstyle at all.  It might look better shaved.  But what is she thinking about?  Letting Mom know that she doesn’t think she can manage a hairstyle, as though she’s notifying her that she doesn’t want to wear a dress today.  So impressive on so many levels.  So worthy of teaching all the adults in her life what’s the proper way to deal with adversity.


As you can see here, Shelley can make anything look good, as these girls make it super easy to make things look good.  Keep me out of the picture though...

So the week of September 12th brings us two things I wanted to spent a little time talking about...

The first of which is the two year anniversary of Amie's diagnosis.  How in the heck have we done this for 2 years?  I remember meeting some people in clinic and hearing them talk about how they had been in treatment for 2 years and thought that there was no way we could ever do that.   Well, we are.  We have no idea about when treatment for Amie might ever be done as we're in seriously uncharted territory with her specific diagnosis....  but we're going to keep plugging along.  2 years.  Yikes.  Will we hit 4?

Next, on Saturday September 13th is the 10th Annual Tim Watson Golf Tournament and fundraiser.  We are one of the two families they have chosen to donate towards, as I've spoken about here previously.  I spoke to Kim Dybicki yesterday, and she said that anyone who wishes to donate gift certificates, baskets, or anything of the like for their charity raffle would be greatly appreciated.  Email her here to get in touch with her about that.


I originally posted this on Facebook, and wanted to close out the post with my pre-school preparations.  Anya is helping me garner the proper ferocity to be a Viking (the mascot of my middle school).  I plan on wearing the hat the first day of school to help get me into character.

Have a great day, y'all!