Some of the news was not what we wanted to hear, but also was what
we thought it was going to be.
Tuesday : NO MORE GLASSES ! Ethan and the entire family was
very happy with this news. The neuro ophthalmologist said that Ethan's
vision is determined by the size and growth of his tumor. No other
treatment can change what has already been set in play. Ugh ...
Wednesday : "The team" made some med changes first thing. They
reduced the amount of the meds he is currently on. On a routine that
will continue to reduce until the amount ends (Ethan liked that news).
They started some new meds on a spaced out schedule that will in time
replace his current meds (Ethan not sure about that news). A lot of
ideas and options put out there regarding palliative care. Lots of
decisions need to be made soon with help and guidance from CHLA.
The elephant in the room was "what are we really looking at here?"
Ethan needs someone to walk with him at all times now. His eating and
drinking is a constant watch due to swallowing issues. And as his tumor
grows many other issues are going to arise. When asked directly his
team said " it could be several days to several weeks based upon speed
of tumor growth and what it effects most severely". Very quiet and
many adult wet eyes.
We continue to be thankful for all your prayers and support. We have
been blessed with 202 days with Ethan than we were predicted not to have -
and we are STILL counting !
Ethan and Dad (Kent) on an
outing to the Pumpkin Patch
30 Sept. 2013
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