Shot in the Dusk...

"No, I wouldn't say it's a shot in the DARK, but rather a shot in the DUSK."   This was Dr. Fuchs response when I questioned, if Braeden having a spinal fusion would be a shot in the dark.  

Comforting, I know...

He had just finished telling me that out of a team of 4 spine physicians, that only one of the physicians would consider doing the surgery.  Believe me, we don't want him to have the surgery.  

But there is something very wrong, there is no doubt.  

Just in the past six weeks, Braeden's right hand has deteriorated even further.  

His hand strength in May averaged 18 to 20 pounds.  

In the month of June, his average fell to 13 to 17 pounds. 

In these first few weeks of July, his strength is averaging 10 to 11 pounds.   

Braeden told Dr Fuchs today at this rate, he wouldn't have use of either hand in 6 weeks.  His left hand strength has been at 3 pounds for months.  He has been "one handed" for months using his right.   

It is alarming how quickly his right hand is deteriorating, and the amount of muscle wasting and atrophy the right hand is now showing.  

The simplest of things are becoming even more impossible for him.

Last night, we were playing a game, that required him to write his answers.  He was only able to write by holding the pen with a closed fist.   Besides, all of the other things that is going on with him.  How in the heck is he suppose to get through what will already be a challenging 11th grade school year?

Plans were made today for Braeden to skip Avastin tomorrow.  (If CHOP deems surgery necessary, they don't want it to be delayed by 4 weeks.  This is the amount of time he has to be off of the Avastin if he requires surgery.)   Clearly, we don't have 4 weeks to spare.  

Could it be that because he has been off of the Avastin that this is causing the quick decline of his right hand?  If you know the answer, just put MD behind your name and say you work at Duke.  Your guess is just as good as anyone else's.   

Our band aid solution to stabilize his hand strength is to begin the  massive doses of steroids again.....I can't even say how much this sucks for him.  The side effects are terrible.  

He is to continue to wear the C-collar.   (I can't tell you how much fun this kid is having.)

CHOP update:

We plan to fly out on Monday.   He has an EMG first thing Tuesday morning at University of Pennsylvania.   (EMG=PAIN.)

We have a MRI scheduled on Tuesday at CHOP. We will see the neuro-oncologist, and the neurologist that day as well. 

Everyone's love and prayers and thoughts are greatly appreciated.

#BraedenBrave

#MrUnlucky