Update # 130

Ethan has now reached 500 Days  !

Hard to believe that Ethan has reached this goal.  I can
clearly remember that March day at CHLA when we
were told that Ethan had DIPG.  I remember feeling
like I had been punched in the gut when told that his
condition was 100% terminal.   Wow  !

Ethan has traveled through a series of medical hoops.
He has endured x-rays, MRIs, CT Scans, shunts, ports,
chemo, radiation, physical therapy, clinical trials (meds),
and more lab work than anyone should have to endure.
And through about 98% of the time and events, Ethan has
done it with a smile on his face - amazing !

We were told that based upon past experiences, we were
looking at Ethan passing away between late November
to mid December 2013.  The flaw in that plan is that
Ethan did not agree to that time table.  I have been told by
several that they cannot explain what is going on, it is
so difficult to predict ...  Through it all, we are so lucky
to have been with Dr. Epstein and CHLA.  They are
great and I feel truly are looking out for Ethan's best care
and interests.  We also have been beyond blessed to get
together with So. California Hospice Foundation.  Their
services, level and quality,  are so helpful.  They deal with
so many issues for us,  and Dr. Mall and nurse Marta
could not be any better for Ethan.

Ethan continues to get mail, most recently from Colorado
where Papa's friend Konna is visiting.  Tom and Karen also
came by for a visit. They are very nice and they brought
Ethan a DVD.  It is an animal version of a Indiana Jones
type movie.  Have watched it twice - likes it.

We are so thankful for the support and prayers from so
many, thank you.  Ethan says Hello !

Photo of Ethan in Dec. 2012
just prior to being told he has
DIPG.  Such a happy kid.