Update # 99

Sitting here watching Ethan take one of his power naps.  It
occurs to me as I reflect on some facts - how lucky we are today.

Most DIPG diagnosis occur in children between the ages of
five and seven years old (Ethan was five).  There are about
150 new cases a year in the United States and about 300 new
cases if you count all of North America and Europe.  Typical
survival time is 9 - 12 months from diagnosis with 90 % not
surviving past 18 months.  Ethan will reach 12 months from
diagnosis this Saturday (the 15th).

Lots of people talk to us about quality of life, Ethan's life.
With DIPG, your brain still works.  That, I think, is one of
the worst aspects of this illness.  Ethan's brain still works fine,
he still has it all together.  This I believe is what causes his
frustration, he wants to say and do things that he knows he was
once able to do and now cannot.  Even though his body is not able
to perform as he wishes, he still is able to communicate and
he laughs at life and what happens in it.

Much of his desire to fight and have moments of enjoyment
come from his Dad (Kent), his Grandmother (Kathy) and his
friend Dr. Epstein.  Anyone who meets and/or interacts with
Ethan gives off energy that he absorbs and uses to keep his
smile and happiness going - THANKS  to all of you.

Have tried to load this youtube clip several times but have
had no luck.  To see Ethan's friend Dr. Anat Epstein and get
an idea of her motivation and desire please watch this.  Go
to www.youtube.com and type in Dr. Anat Epstein.  The title
is think cure recipient.  Length is 1:26 and is from Aug. 2009.

Thanks again to all of you !