Friday, October 18, 2013

Happy Birthday?

Firstly, for those of you who might not know, today is Amelie's 3rd Birthday.  I kinda want to shout it from the rooftops, to let everyone know.  I think that's mostly to both celebrate that she's still here a year after that wackadoodle crazy diagnosis that no one in their right mind can ever really be ready for...but also because I find myself so frustrated and angry that she's going through this process and she's in limbo.

There's such a different story unfolding with these rounds of chemo.  When we had the first diagnosis, they laid out a plan of attack in our first meeting in October after the brain surgery.  They told us exactly what would happen, for how long it would last, and then followed that plan.  They had slight deviations, but it was the same plan the entire time.

Now?  It seems (to me, a not-so-humble observer) that we're off into much more uncharted territory.  Every conversation we have with the Oncologist team is filled with lots of "we'll see what happens...", and "we'll make that decision when...".  To me, that's what happens when I cook.  I keep throwing things at a recipe until I get to a point where it's either good, or tolerable, and then I eat it.  For me, that works great, but Shelley says I have broken taste buds.  For Amie? It scares the hell out of me.

"Throwing spaghetti at the wall to see what sticks" is another analogy that I might use to describe her treatment.  I don't mean to say that they don't know what they are doing, but they are definitely just trying things out to see if it will work.  There's 0% certainty anymore, and that was really reassuring last time.

Anyway, today is her birthday, and Shelley is doing her absolute best to make it special.  We bought her breadsticks (Jet's Bread) last night for dinner, they're going to the pool to swim today, and then heading to Mott for chemotherapy.  They'll be there until 5:30p, head home, eat her "volcano cake" which is a pile of creatively frozen ice cream, read some stories and then go to bed.  She'll be wiped.

So it's another lost thing for a little girl who doesn't know what she's lost, losing nor might lose.  It's a bit sad for me, but the important thing is to make sure things are completely happy and explosively fun for her.  I can do that.  That's my best present for her today.