Update # 69

Today is Halloween, and I can tell you what I would like
to scare away !  Now that I have gotten that off my chest,
let's move on.  ( I'm smiling )

Yesterday we were suppose to go to CHLA, but that did not
happen.  Because we were not at the Ronald McDonald House
(we did not request a room) we needed to deal with Wednesday
am traffic.  I have a few adjectives that could be used here but
Ethan gets in my face if I use them, sooooo...  There was no way
that we would have even been close to our appointed time, so
we are rescheduled for mid-day next Wednesday (the 6th).

Late Wednesday afternoon we received a really nice phone call.
Anat Erdreich - Epstein  MD. PhD, called and chatted with us
for about  30 minutes !  She is Ethan's team leader and main
doctor at CHLA. About 10 - 15 minutes of the call dealt
with how Ethan was doing, what are we observing, and how
is Ethan feeling.  Then she asked if she could chat with her
"little friend".  I must say here that in all my experiences and
conversations with others, never have I met a lead doctor
that is as wonderful as her.  Ethan, and us, are truly blessed
to have her in our corner !  They have developed a really
nice "friendship", and Ethan looks forward to trips to CHLA
to see her.

As of today, Ethan is not doing as well as we would like.  He continues
to have vision problems.  This is mostly in his left eye and
causes him real concern.  His major motor skills are not doing well.
He needs assistance to walk any distance and his movements
are quite jerky. His weight has peaked and is very slowly starting to
drop off.  This was a side effect of one of the meds he needed to
take.  He has fine motor issues as well.  It is very hard for Ethan
to hold or grip small items with his fingers.  This causes real
frustration and at times upsets Ethan a lot.  He has left side of
body weakness and is dealing with facial palsy as well (left side).
He continues to have problems swallowing and must have all
liquids thickened prior to drinking.  His voice is also a bit
higher than a normal 5 year old.

But in spite of all these issues, he laughs, smiles, jokes, and provides
us the opportunities to do the same.  He is a remarkable 5 year
old young boy.  He just reminded me that he is only a week away
from being 6 !  And he is 231 days older than he was expected to be.

One of the many, many great people at CHLA sent Ethan some stuff recently.
One item that got his attention was 3-D chalk and special glasses.
Thank you Alisha ( Ducky ) !

We continue to be very thankful for all the prayers and support we
constantly receive.  Thank all of you so much.

Ethan with his chalk and 3-D glasses

10-30-2013

Update # 68

On Monday while it was overcast in Riverside, Ethan took Grandma and Papa
to Disneyland.  Because it is said to be the happiest place on earth, it may have had
some effect on the mostly clear skies and 68 * there.  Because Ethan uses the "chair"
when needing to go long distances - we gave it a try today.  Disney has made it
really easy to get on / off rides and the cast members were SO NICE to Ethan,
it turned out really nice.  One cast member was extra special to Ethan, taking a
picture with him and giving him a "Kiss" -   he was so excited / happy with
that !

Wednesday we return to  CHLA  for some lab work and meet with the team
again.  It has been several weeks since his last visit and I am curious to hear
what they have to say.  Hospice is in place and they come by twice a week
to check in.  Ethan puts up with all the checks with only minor fuss, but it
is obvious he does not like all the checking.

Again thanks to all for the prayers and support.  A special thanks to Dave
and Wendy, the "T" stuff and of course the mustaches were / are great !

His new girl ...
10-28-2013

The friend he saw on TV this morning
and met today.

10-28-2013

Update # 67

Ethan received a birthday package and could not wait
for the actual day.  So ... he went about opening it and
having one of his happiest mornings in some time.
There were many items in the package, but the one
that caught his funny bone was - well you can see.
We are wearing these all morning and laughing till
it hurts.  Wendy and Dave, you have outdid yourself
again !

Thanks to Uncle Keith for the
photo effects that Ethan wanted.

Uncle Keith, Grandma, Ethan,
and Papa.

10-23-2013




Call me slow, but was just told that on most of the photos
you can click on them for a larger view - who knew .

Thanks again for the prayers and support.  It is what provides
us with mornings like this one that will be "forever memories".

Update # 66

Just noticed that it has been a while since my last post
about Ethan.  He continues to deal with life head on.
He is a true fighter,  I really admire his grit.

On Sunday evening, NBC TV News / Sports with
Fred Roggin did a "Roggins'  Heros" about Ethan.
Not sure how to get this on the blog so will list the
computer address here. Once the page loads, scroll
down to " 5 yr. old's One Play inspires football team.

http://www.nbclosangeles.com/news/sports/

Enjoy the video, it is really great what these high
school students did for Ethan.  He still speaks
of the experience and smiles.

Thanks as always for your prayers and support.
Your friendship and true caring about Ethan is
amazing - we all thank you !

Update # 65

Sunday evening and all is calm.  Ethan has managed to totally
wear Papa (me) out.  Ethan realizes that he has issues to deal
with that cause life to be a bit strange for him.  He is over
weight as a result of his meds, he has left facial palsy, balance,
vision, swallowing, and some major muscle issues all due to the
growth of the tumor.

So...     Ethan takes an adult had to walk, or will crawl on all fours
by himself to get around.  He picks things to do that require very
little movement such as board games, reading, TV.  He enjoys
sitting out back and cloud or bird watching, and tries to play catch
with a large soft ball.  He has a wheel chair for his use, but does
not want to use it.  Grandma was talking to him today and found out
he does not want to use it because it was for sick people in the
hospital - remember !

His mind is about 95 % of before, so interaction verbally is still
very good.  Only real difference is as he tires, his process is a bit
slower and the speech is a bit more difficult to understand.

Ethan and the entire family thank all of you for your constant
thoughts and prayers.  Attached is a photo from the end of Sept.
when Ethan and Dad (Kent) went to Sea World in San Diego.
Thanks again !

Ethan and Dad (Kent) at Sea World
Sept. 2013.

Update # 64

Wednesday has finally come to an end.  Hospice has come by
twice today.  The first group dealt with paperwork mostly.  They
discussed what is available and how to put it in place.  The second
group was to assess Ethan and determine if he needs anything right
now.  Thursday a couple of nurses will come by to meet Ethan and
get to know him a bit - and he can get to know them a bit.  The
level of tension I was expecting did not happen, but tension non the
less.

After dinner Ethan asked for an early bath !  He seemed to relax
so much during this time, just soaking.  Note to self, remember he
knows something is up and he needs to decompress as much as
the rest of us it not more so.

Totally enjoyed sitting on the couch reading aloud with Ethan this
afternoon.  But then legos on the floor was pretty cool too.  I think I
just enjoy time with him period.

Thanks to all of you for your prayers and support.  Cannot imagine
going through this without it.    THANK  YOU  !

Update # 63

Tuesday is normally when we are getting ready for our trip to LA.
We had a schedule to do lab work at CHLA weekly and see the
team every three weeks.  But after lab results and physical exam
last week that is no longer in place.  Although it is a step backward
which hurts, I admit we all will not miss that stress filled trip.

Wednesday we have a meeting at home with the hospice folks.
Dad and Mom will be setting plans in place and finding out what
services are available.  Really not looking forward to the stress
with this meeting.

In looking at Ethan's pictures via "slideshow on  iPhoto" we realized
that one year ago this week,  Ethan was having a ball with Dad at
Sea World.  It was a very neat trip full of fun and adventure.  We had
"no clue"  that Ethan had any issues at that time.  It is amazing what
can happen over a year in time !

Thank all of you for your continued support and prayers.  208 days
and counting - Thank You !

Ethan full of joy at Sea World
San Diego Oct.  2012.

Update # 62

Friday evening with Ethan.  We have built a card table tent / fort and
played until we were both bushed.  Did not take long for me, being a
kid on hands and knees is hard work ! (ha ha)  Next we watched some
vintage TV -  Zorro.  The older black and white Disney version.
Grandma and Uncle Keith returned from Costco with a dragon for
Ethan - and boy was he happy !  Several photos taken and I will share
one here.  The photo is a happy one, but the facial palsy really shows on
Ethan's left side.  Ethan continues to enjoy life and his role in it ,  in
spite of facial palsy (left side),  balance issues,  vision issues,  difficulty
in swallowing  and  the knowledge that something is wrong and he cannot
fix it.

He says hello to all and we all thank you for your prayers and support.
Ethan said to have a good week-end, what a guy.

Ethan and his new Dragon.

4  Oct.  2013

Update # 61

Saw LOTS of people over the past two days and received lots of news.
Some of the news was not what we wanted to hear, but also was what
we thought it was going to be.

Tuesday :  NO MORE GLASSES !  Ethan and the entire family was
very happy with this news.  The neuro ophthalmologist said that Ethan's
vision is determined by the size and  growth of his tumor.  No other
treatment can change what has already been set in play.  Ugh ...

Wednesday :  "The team" made some med changes first thing.  They
reduced the amount of the meds he is currently on.  On a routine that
will continue to reduce until the amount ends (Ethan liked that news).
They started some new meds on a spaced out schedule that will in time
replace his current meds (Ethan not sure about that news).  A lot of
ideas and options put out there regarding palliative care.  Lots of
decisions need to be made soon with help and guidance from CHLA.

The elephant in the room was "what are we really looking at here?"
Ethan needs someone to walk with him at all times now.  His eating and
drinking is a constant watch due to swallowing issues.  And as his tumor
grows many other issues are going to arise.  When asked directly his
team said " it could be several days to several weeks based upon speed
of tumor growth and what it effects most severely".  Very quiet and
many adult wet eyes.

We continue to be thankful for all your prayers and support.  We have
been blessed with 202 days with Ethan than we were predicted not to have -
and we are STILL counting !

Ethan and Dad (Kent) on an
outing to the Pumpkin Patch

30 Sept. 2013