Update  #  21

It's Saturday afternoon and we are home again. There has been another change to the "plan".  We will not be going back Sunday evening after all.   Mom will be there so we will see when/what happens next for coverage.  Thursday  Ethan picked In and Out for cheeseburger lunch, wow can he eat !  It was a nice outing that went very well.  That evening
we again went out for dinner and was proud of his behavior in contrast to others in the restaurant.  Friday night a corp. from the LA area hosted a dinner and games for all guests at RMH.  The food was great and Ethan won two games of "BINGO" and was super happy !  We continue to be blessed by friendships and prayers - thank you all VERY MUCH.  Ethan sends you all his best ...

Photo of Ethan and Dad in RMH room.    4-26-2013

Update  #  20

Came to CHLA to visit Ethan about noon last Tuesday.  That was the
day he was changed to out patient and moved to Ronald McDonald House.
We have been with him 24/7 until the am of the 27th (Sat), then will
come back to Riverside.  Sunday night we will return to stay 24/7 through
the next week.  He goes each morning to UCLA for treatments and then
has various med times throughout the rest of the day.  He is planned to have
his last UCLA treatment on May 9th. (yea)  The afternoons have been full
of rest (he still tires easily), games, some TV, and lots of reading (smile).
I have created a monster, he wanted to play cards - so... now he beats the
heck out of me at "21". Am trying to talk him into going to Las Vegas but
he isn't sure yet.  I tire easily also, stress out a lot, but still continue to be
in awe of this young man.  The effect he has on me and all around him is
unreal yet so amazing !  Thanks again for all your prayers and support, we truly
are thankful for all.  Ethan says "hello".

Update  #  19

Well the plan is to move from the hospital to Ronald McDonald about noon
on Tuesday.  The radiation schedule stays the same but the therapy and meds
schedule will change some.  Ethan was happy this afternoon as he received
his new tie for completing his therapy schedule for last week.  Please note the
weight gain from # 13 to now (#19) as a result of the radiation and meds.
The smile is real and is there most of the time, what a neat kid !

Update  #  18

Was able to see Ethan Sunday.  He has had a tiring week of radiation
and therapy, but he tries his best.  On Thursday he began to have
stomach pains, which became vomiting and diarrhea on Friday.  By
Sunday he was feeling somewhat better, but guests got  a surprise.
Anyone coming in his room had to wear gloves and a gown - and had
to do the hand wash thing.  Ethan enjoyed seeing Grandpa in a gown
and had a good visit with Grandma that included some cuddle time.
Looks like Ethan will be moving to a "Ronald McDonald House"  within
the next week - will see how this new event works out.  Thank you for
your continued support and prayers.

Grandma and Ethan reading .  An activity
they both have always enjoyed together.

Update  #  17

Had a good week-end.  Ethan tires easy and because of his meds
has more weight and some mood swings - but he still comes
through with periods of time that are "the old Ethan" !  On
Sunday he was allowed out of the hospital for a few hours.  When
asked what he wanted to do, he said Griffith Park Observatory.
He can see it from his hospital window,  so away we went.  We
drove through the park, then up to the observatory.  He enjoyed the
views and commented often about stuff he was seeing.  Then we stopped
for a picnic.  About 2 hours into the trip, we could tell he was tired, and he
asked to go back.  It was a good first trip and upon returning he looked out
his window and said, "yep, that's where I went".

 Dad, Ethan, Grandpa













    Dad, Ethan, Grandma

Update  #  16

Ethan's routines seem to be getting the better of him
this week.  Although his spirits are usually high, he is
really tired at the end of each day. He had been going to
sleep between 8:00 and 8:30,  but most of this week has
seen him asleep between 7:15 and 7:45.  His therapy
motivation chart was filled on time, which made him excited.
The physical effort required is very tiring on him and
he often becomes cross - but tries as asked to do it all.
On a bright note, Uncle Keith made him some choc. chip
cookies - Yea ! He was real happy about this, especially the
6 inch diameter one.  As his nurses moved in and out of his room
this pm he was sharing them saying " enjoy your cookie".
Dad (Kent) will be staying with Ethan through Sunday.  Sunday is
also the first time since March 15 that Ethan can leave the
hospital.  They will allow him out for a few hours of
family time.  Looking forward to possibly a couple hours at
the park.  Thanks again for all the positive thoughts and
offers of support.  We have "world class" friends - Thank You !

Update  #  15

Ethan has had a pretty good week-end, all things considered.
Had good times in two of three therapy trips.  The physical
therapy working on muscle development (gross motor) is
hard - and he really does not want to work.  But in the end he
does what is needed and they are very understanding of him.
He also was super happy as he was able to eat a big plate of
cheese tortellini with alfredo sauce for Sat. dinner.   Grandma
brought him some chicken alfredo which also made his Sunday !
The boy does like to eat !  On Sunday Ethen went down to the
patio area an enjoyed some family time outside.  He also wears
a tie almost non stop, 
it's a grown up thing (smile).





Uncle Keith, Ethan (tie), and
Grandpa

Update  #  14

Thursday was a great day !  Ethan had in his own words, "a very busy and good day".
The therapy folks and Ethan have set up a rewards system to keep him motivated. Dad had
brought him a tie to wear (like some of the Drs.) so his reward will be another tie.
Ice cream has been taken off the can eat list. It has something to do with swallowing.
He was not real happy about that, but pudding and yogurt are still okay.  His days are really
full, treatment at UCLA in the am and 3 hours of therapy at CHLA in the pm. His few hours
of down time and sleep are mixed with getting his vital signs checked and taking various meds - ugh...  He had the staff remove his bedspread. "Aunty" Kay brought him a quilt that she and
others from her church made - he is really happy and uses it all the time. ( BIG smile )
Thank you all for your continued prayers and support we, the family, and Ethan cannot
thank you enough.