Update # 76

Ethan is getting ready for a visit to CHLA.  We have a noon appointment
and hope that traffic will not be to bad in either direction.  More to
follow ...

Well the trip in was uneventful (yea), but the rest of the day was not !
Ethan had difficulties getting his port flushed, thus tears and crying.
Took him a long time to calm down, and he was not happy with me !

Had a good visit with his Dr. ( they like each other ).  Ethan is now
officially off all meds.  No clinical trials and he does not need to
return to CHLA for labs.  His Dr. wants to keep contact, and hopes
Ethan will come visit, but no more required or needed visits.  This
is both good and bad news.  Good because Ethan does not need the
stress in his life, these trips took so much out of him.  Bad because
it marks the  last phase in his battle with DIPG.  No one knows
how long it will be, but have been told it usually does not last very
long.

Before we left, we made a few rounds visiting people who have
become friends and have really made time with Ethan quality.  As
we were leaving we went to the garden, an area Ethan enjoyed while
inpatient there.  It was all decorated for Christmas and provided us a few
photos that we will upload soon.

Grandpa like Ethan is tired, so will close this post.  We as always thank
you for your prayers and support.  This is not something we can / could
do without  this help.  More posts and photos to follow.

By the way , Ethan spent lots of time telling almost everyone at CHLA
about his recent "Big Truck" experience.  It seems it was more important
to him than I thought it would be - thanks again to  Dave & Wendy .