Update # 51

Trying to find a way to say where we stand without making it sound too bad.
Went down to LA Tuesday evening thanks to a room available at the Ronald
McDonald House.

Wednesday morning went to CHLA and did the lab work and a meds  test.  We
had to wait for a bit before our appointment with the team ( Ethan's Dr's and staff ).
Ethan's blood work numbers were all wrong, they think it must have been a bad draw.
This meant Ethan needed a second lab work up.  He lost it, crying and saying
no.  His reason - "I only planned for one, I can't do more today".  Only 5 years
old and already working out stress / fear strategies on his own !   Bottom line,  no
new labs today, which also means no new weeks meds.  His lead Dr. believes his
balance issues, eye sight issues, might be his tumor growing - but not sure.  They also
want us to start thickener in his liquids again.  We are waiting at home for a new
MRI and possible other tests to help confirm  what no one in the room wanted to say.

Tests will be scheduled as soon as there is an opening, but no matter what we
have another team / family meeting next Wednesday.  Until then thanks again for
your prayers and support. 

L  to  R

Dad (Kent),  Grandpa,  Grandma,
Ethan,  Uncle Keith.


9-2-2013