Update # 42

This week we had two different days that we needed to be at CHLA.  Thank you
Ronald McDonald House for coming through with a room .  We were not looking
forward to back to back round trips to LA.

Tuesday :  Went to CHLA for an MRI.  When we got there Dad (Kent) questioned
the nurses and techs about what they were saying vs what we had been told.  The
proceedure was held up for over an hour as Kent kept asking questions and wanting
answers before he would let them continue.  Pulled in several doctors and did a reread
of the clinical trial guidelines.  We finally came to an agreement and Kent said okay.
Also, they did the blood work so they would not have to do it on Wednesday A.M..
This was nice for Ethan, it also allowed them more time to view the results.

Wednesday :  Went in to meet with the team of doctors.  Ended up waiting an hour as
some of the doctors were late getting there.  Ethan's blood work showed that his white
blood cell count was low, so they are not going to give him meds this week as was
the plan.  This will allow him and extra week for the white cell count to improve.  The
new plan has Ethan starting his meds again next week - they hope.  They also want
Ethan to have another MRI on Friday.  It will be a different type / view and they want to
look at something ( ? ).  Other than that, they are all good with his progress and his
attitude.

These two days upset Ethan (first time) and also caused Dad (Kent) to be a bit
upset.  We understand that being on a clinical trial has its own set of concerns,
but we need good communication to keep concerns / questions in check.  But
over all, we are REAL happy with how everything has been going and how well
Ethan and family have been treated and attempted to be kept in the information
loop.

To keep our smiles going, Dad, Ethan, and Grandma went to Griffith Park for a bit.
Ended up relaxing for a bit, looking at the trees and clouds , listening to the wind.  Then
we found the amusement area - oh yeah !  Had some fun there then headed back
home.  What a couple of days.  Thanks again to all of you for your prayers and
support.  We could not do this without you being there.

Ethan and Dad (Kent) at Griffith Park
amusement area

7-31-2013

Ready for the train ride at Griffith Park

Ethan and Dad (Kent) 

7-31-2013