Another day, another Avastin (#9)

Hi to all,

Braeden had another Avastin infusion today.  This was done because his steroids were increased to 8 mg a day last week, and his numbers have not changed or improved from the 10 pounds.  This number continues to concern, and scare the crap out of us.  His left hand is at 2 to 3 pounds and if you have followed this blog, you know how little he is able to do with that hand.  (For reference, Braxton his twin, is able get numbers in the 90 pound range.)

Below are pictures of him with each treatment he has had thus far.

Ideally, we would love to see his hand strength numbers rise, and keep rising.  Unfortunately, we need have to have realistic expectations.  It is likely, he will never have full use of his hands again.  Braeden, is not sure if he will be able to write or type to meet the expectations of being a high school junior.  I can't even begin to think how that is going to work out.  

I am planning on contacting "my school people" who have been fantastic throughout this past year and  a half at the high school and plan a meeting,

Chop Update

So far, we have a full day of appointments on 8/18, and an appointment on the 19th.   Plane tickets, hotel, and car have been reserved.  8/18 cannot get here soon enough.

National Health Institute/Undiagnosed Disease Network

Dr Landi told us today, that UDN has contacted Dr. Smith.  Below is the email to Dr. Smith. Big prayers are needed that NIH & UDN will get in involved with his case.  

This tumor has taken away quite a bit from my boy.   Right now, I would be happy if it just returned a few things.  

Continued prayers are appreciated.  Love to all.

#BraedenBrave

#MrUnlucky