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.

Update # 129

Day  491  and Ethan continues to move on ...

Ethan had a special visitor from LA today.  Alisha,  a special
lady from his time at CHLA came to visit again.  He always
enjoys seeing her and she always has "3 hugs and 3 kisses"
for him.  In addition to her visit, she also brought him a
couple of DVDs ( Scooby-Doo  & Ninja Turtles ).  It was
really nice to see her again !

Early this past week, Cousin Dan came by and helped Papa
put in a window cooler for me .  It really helps in the late afternoon
when it is really hot out,  thanks Cousin Dan.  While here, he
also brought Ethan some audio books - real cool !!!

On Friday Auntie Kay (not really my aunt) came to visit Grandma
( and see me ).  Ethan really likes her and without prompting gave
her a huge hug and posed for some pictures.  She is such a nice lady.

Ethan was happy last night (Saturday).  As he was getting ready for bed,
Papa's friend Tom called.  As they talked Ethan motioned for the phone.
Papa held the phone next to Ethan's ear and in a very weak voice,
Ethan tried to talk to Tom.  It was so great, as Ethan usually will not try
to use his voice - very special moment.  Thanks Tom, after the call we
asked Ethan if he could hear you and he said yes, did you like that, yes !

Thanks again to all of you for the support and prayers.  We could never
have reached this point in time without it !

Ethan and Dad (Kent) having
some rough house (mostly
hugs).

18  July  2014

Update # 128

Day 489 and Ethan continues to persevere !

Ethan did the weight check again today.  After two different weighs,
we are going with 38.8 pounds ( 17.5 kg ).  This is about the same
as his weights on 28 June ( 0.3 kg more ).  Even with his issues of
late with swallowing, he has managed to maintain his weight - GREAT
news !

Ethan received a large envelope in the mail yesterday.  It was from Virginia
and had lots of stickers on it.  Inside was a bunch of cards and a large
scarf covered with a USMC emblem  (cool).  It was from a lady named
Rita who Papa met in high school and also taught school with.  She was
visiting family on the east coast but still took the time to think about
Ethan.  She,  and her family,  are so very nice - Thank You !  Ethan's
Dad (Kent) tried to tell Ethan to say "Uh RAH" - it does not sound like
Dad,  but everyone in this house understands what he is saying -
all day long !  (smile)

Ethan got quite excited today as Grandma picked some really large
tomatoes from their garden.  Grandma tried to get Ethan to hold one,
but the weight was to much for him.  If he could talk, I'm sure he would
say the look on his face means he thinks he is a super gardener.

Ethan also had some visitors Wednesday.  Tony, Karen, and Karen's Dad
stopped by to visit.  They use to live in Riverside and are good
family friends,  now they live in Washington state .  It was good to see them
and the large "Donald Duck" was very cool !

We want to thank everyone who continue to keep Ethan and his
family in their prayers  and support.  Thank You all very much.
Two photos below

Ethan gives a big thumbs up to
Rita and her family for the
Great USMC stuff   -    Uh RAH  !



17  July  2014

Ethan busts Papa taking a photo
of Ethan and Grandma doing the
big hug thing !


17  July  2014

Update # 127

Ethan has reached Day 482 -  amazing,  totally amazing !

Ethan continues to progress - taking one event,  day,  night,
at a time.  Over the past week he has stayed pretty much
on an even keel.  He has had a few eating moments that
have been very difficult.  This is because the mussels that
allow him to swallow have not been functioning very well.
This has been an issue from the very beginning but has
become more severe as time passes and his tumor
progresses.  But in spite of it all,  he still smiles and lets
you know all is good.

In the past few days Ethan has received several cards. A
couple of cards are extra special to him.  He received a card
from Riverside  (his home town) ,  it was from Tom and Karen.
They continue to get Ethan to smile and he likes them very much.
He also received a card from Colorado that had a group of young
wolves on it.  This card came from Konna who has also sent mail
from South East Asia and a text  from Kazakhstan.  Ethan also wants
me to send  a " Hello "  to Aunt June.  He got your wishes and
sends a smile back to you !

Ethan's new movie (DVD) of choice the past couple of days
has been "Hotel Transylvania".  In the movie is the line
that says - "I never said Blah, Blah, Blah".  Even with little
or no speech,  Ethan tries to say that line then laugh.   Took
a while to figure out what he was trying to say,  but Uncle Keith
figured it out and now we all laugh.

We continue to be blessed with prayers and support.  Thank you all
for taking the time out of your day / evening to think of Ethan
and our family.

 

Update # 126

Ethan puts another week in the books - day 477 !

Ethan has had another pretty good week.  He has had a few
small issues, but thanks to Grandma and Nurse Marta these
were dealt with quickly and all seems to be moving along.

By his own choice,  Ethan elected to stay inside and not
watch the fireworks that are part of the celebration of
July 4th  We were still able to hear some of them, but
he was happier with a more quiet evening.

Grandma's friend Marge from Northern California sent me
a package this past week.  Four new books to read !  It was
exciting to receive them and enjoyable to have them read.
Ethan also received another package from a friend that
Grandma use to teach with.  Russ and family sent Ethan
a great collection of "July 4th" stuff.  We now have items
all around the house - go red, white, and blue !

Ethan's friend from Southern California Hospice Foundation,
Michelle (got the Grinch to visit Ethan) has been selected
to throw out the "first pitch" at the Angel's Baseball Game
tonight.  He is excited for her and wants to see it on TV.
" GO MICHELLE ! "

We continue to be thankful for the prayers and support
that continues to come our way.  Thank you all very much.