Patient Zero

Interesting day.

Kean had his little therapy school today and when we showed

up, his Speech therapist informed us it had been a year and

today was the day for his evaluation.

Could they have picked a worse day?

He's hopped up on Steroids-- Steroids that make

him angry, emotional and mostly non-cooperative.

This face kinda captures his state for most of the week he's on 'roids.

 I told her to use the fact that he will eat the entire contents of

a refrigerator to her benefit for snack time.

And she did!  In between tanking down two containers of applesauce,

a bag of grapes, a banana and goldfish crackers, he cooperated and made

it through his eval.

So, he's on the level of a two year old-- which isn't great

when you consider that he's five.  But as we decided, after

all he's been through, that is pretty darn good.

We've seen him blossom lately-- with his walking and his talking.

He'll catch up, he'll catch up!

 The other interesting thing today is Kean's nightly Chemotherapy 

medicine was changed.

Well, the recipe anyway.

We've been waiting for months for the FDA to approve a

new mix of Mercaptupurine or 6MP for short.

Up until today, I had to trek to the hospital every other Monday

to pick up his 6MP.

This new recipe is more stable and doesn't have to be

compounded (made into a liquid).

Kean is the very first patient in the state of Idaho

to be on the new recipe.

Plus, and here's the good part-- it will last a whopping

six weeks!

The bad part is the price.

 Kinda scary when you think about how many different drugs he takes

in the span of a month.

Thankfully, it is covered by insurance-- but I find the 

prices all so crazy.

Really now, do the pharmaceutical companies have to make

that much???