Update # 85

It is about 8pm on the last day of 2013,  what a year this has been !
Ethan and family would like to take a minute to thank all the people
who have offered prayers, support, and amazing events in our life.

As we move into 2014 we wish you all health, happiness, and a
closeness that only very good friendships and family can give.
Happy  New  Year  !

Ethan displaying some "New Year's"
cheer.  This young man amazes me
every day.

31  Dec.   2013

Update # 84

 On this Christmas morning 2013,  Ethan sends you all Holiday greetings
and good wishes for your New Year.

Update # 83

At about 5:30 pm a fire engine, a ladder truck,  a rescue truck,  and a chief's truck
came to our house with lights and sirens going.  On the truck was Santa,  and he
along with all the fire crews wanted to say  "Merry Christmas" to Ethan.

Ethan was totally surprised and happy with the entire visit.  Between each person
shaking his hand and wishing happy holidays,  to  all the lights,  and Santa - WOW  !

With all the people, events, prayers , and support shown to Ethan since this all
began back in March 2013,  our family is at a loss to express our thanks.  The
words "thank you" seem so little to all the wonderful experiences that have
come our way.  Ethan and family are truly blessed - THANK YOU !

Update # 82

First,  we had to sign off allowing them to take video
and photos in our home of the event.  Second,  we had
to sign off that we would not post or make public any
video / photos of the event.

                                     THEN

The Grinch arrived with gifts for a visit with Ethan !
The look on Ethan's face was beyond words, he was
so surprised.  They chatted, opened gifts, laughed,
discussed the "movie" and the Grinch read the story
to Ethan !  It was such a fantastic event for Ethan.

There were several emotional moments for all the
adults present.  Let me see  :
     Dad     Grandma     Papa     Uncle Keith     Mom
        3 Hospice folks     2 Universal Studios folks
                 1 make-up person     the Grinch
I cannot think of one thing that could have happened
for Ethan, at this time, that would have been better.  He
enjoys the story to be read to him, he enjoys watching
the video, and to meet the Grinch this way...

They (Universal) will in a couple of weeks, give us
copies of photos and an edited video for our keeping.
We just have to keep it private within the family.
A very small price to pay for such a wonderful
event.  And to the Hospice folks who set all this up,
and got it to happen in such a short time - THANK YOU !
THANK YOU !              THANK YOU ! 

Update # 81

Monday 16 December found Grandma and Papa making a trip
to L A at Ethan's request.  Beginning when our two boys were
born,  each Christmas we  deliver presents to those less
fortunate.  When Ethan joined us, he got right into the routine
with the rest of us.  This year as we went about mailing cards
and putting wrap on gifts Ethan would talk with us.  Due to his
speech, it took some time to get it understood, but he wanted
to give something to Ronald McDonald House and his  doctor
and friend Dr. Epstein at CHLA.  So we made the trip for him
and delivered our combined gifts.  Was a very nice and VERY
emotional visit.  As we were leaving CHLA,  Dr. Epstein
reached across her desk and picked up a card and asked us to
take it to Ethan.  It was a card, already addressed to Ethan,
what a surprise,  for her friend !

We continue to be blessed with prayers and support from so many.
It is truly great, and not just at this time of year, to be thought of
by all of you - THANK YOU !

A thought from Ethan and his
family to all of you.

December  2013

Update # 80

We are enjoying day 274 that we once did not think we would have.
As Ethan goes through this phase, he now is restricted to a thickened
liquid diet only.  His ability to swallow is almost gone.  He again
cannot walk or sit upright on his own, but tries too.  He spends most of
his days listening to stories (enjoys this a lot), watching TV / videos,
or playing with his toys.  The toy activities are sometimes stressful
as his hand movement and the toys do not always cooperate with what
his mind (still very good) wants to do.  The worst part is the speech.
He wants to communicate so bad and gets frustrated when we do not
understand.  We made some picture cards which help a lot, but using them
is a pain sometimes for all of us.

As we enjoy our time with Ethan, we are constantly reminded of the
great friends we have and the power of prayers.  Ethan has friends
from all over the world, and many other states.  He receives more mail
than anyone else at this address and likes to point that out to us.  Ethan
enjoys an older TV show called "Zorro", and thanks to Tom and Karen
we now have a book of Zorro adventures that we read .  And he still
talks about his big truck ride with Dave and Wendy - who are also
responsible for much of the mail and gifts we have.  Yesterday Ethan
received about 35 get well / happy holidays cards from same age
students at a school in Arizona. This morning two friends from teaching days
invited me out for dinner - get away for a bit.  So very nice, thanks Kim and
Deb, you two are so nice !  There really are some truly great people
out there and we are lucky to know some - THANK YOU !

Here are a couple of pictures, one year apart.  Amazing the difference
a year makes.  Again thank you all for your prayers and support.

Ethan hanging out on the floor
with his Uncle Keith.

12  Dec.  2013

Ethan and Dad (Kent) playing
in the back yard - good times.

11  Dec.  2012

Update # 79

Ethan is such a trooper !  He cannot walk or sit up on his own,
but he still tries.  His understandable speech is only about 25 %
now, but we have some great picture cards that help a lot.  I
hope when my time nears that I am as nice to those around me as
Ethan is.  He finds enjoyment in his life, laughs, and reminds us
of things he has done or enjoys.   We have reflective stars on his
bedroom ceiling and when the light goes off the stars shine ( for
a while ).  So we now have a light off / light on routine for a bit.
You can find happiness and joy if you look - but yes, sometimes
the looking is difficult.

Thank you again to our friends and family who continue to pray
and offer support.  Our ability to be there for / with Ethan is
only possible because of you.   Thank You !

Update # 78

Received this quote from a friend who is living in Israel.
It was part of a conversation about Ethan and how everyone
is holding up.

" Yesterday is history,  tomorrow is a mystery,  and today
is a gift;  that's why they call it the present. "

a quote from  Eleanor  Roosevelt

Update # 77

It has been a tiring week.  Ethan continues to battle, but it is
very tiring for him physically and emotionally.  His ability
to sit on his own is now becoming difficult and he is getting
frustrated with his inability to control his movements.  Add
that to his labor to speak clearly and you have an unhappy
Ethan.  We also notice that he is taking in less food and liquid
and this has us all worried (chew and swallow is very hard)

By his choice, he wants no one but Dad, or maybe Grandma
near him at night.  During the day he likes Dad always, then
Papa, Grandma, and Uncle Keith.  He is most at ease and
comfortable when very close to us as we read to him and
sometimes watch TV with him.

We continue to thank all of you for your prayers and support.
We could not have gotten this far without them !

Ethan resting on the couch under
his prayer blanket from Auntie Kay
and his two friends from
"Monsters U", Mike and Sully.


2  Dec.  2013

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 .

Update # 75

Ethan was excited this morning, he knew he was going to meet
the couple who have provided him with mail and packages to
open over the past six months.  He calls them his "Tennessee
friends".

The morning was a bit awkward with breakfast, getting dressed,
and a new med schedule.  We did not get around as fast as we had
wanted, but we did get it done .

Getting to the truck stop about 11:00 am, he finally  got to meet
these wonderful friends.  They had him feeling great in seconds
and took him out to the truck.  After looking the truck over,
Dave arranged for him to get a ride - something that was great
for him.  He sat with Wendy (a first - not a family member - he
said he liked her !) and watched out the window as they drove
around.  As Dave backed into a parking spot, Ethan got involved
and started giving Dave directions - real cute.

Got a few photos, said our byes, and headed home.  Ethan was a bit
ticked, he wanted Dave to take all of us to Ga. to eat.  When asked why
he said that is where they are going and Wendy asked me to go.  I
tried to explain the distance, space, and time involved.  He  came
around to my way of thinking with one condition.  If Dave and Wendy
come back he can go with them and he will nice like their cat.

Want to REALLY THANK Dave and Wendy for opening up
their day and truck to Ethan and family.  They lost sleep, time,
who knows what else  - and all for Ethan.  There really are
some wonderful people in this world and we know two of them.

Dave, Wendy,  and Ethan at
the "Big Truck".

23 Nov.  2013.

The view out the front
window.  Ethan and Wendy.

23 Nov. 2013

Ethan and Wendy in the
"Big Truck".  So where
to next ?

23  Nov.  2013

 Wendy, Ethan, and his new
bear.

23 Nov. 2013

Ethan sitting in the sleeper of
the "Big Truck".

23 Nov. 2013

Ethan opposite Dave in the
"Big Truck".

23 Nov. 2013

Ethan and his new bear outside
The "Big Truck".

23 Nov. 2013

Update # 74

Today is Thursday and Ethan woke up to rain today.  We went to the sliding glass
door and watched the rain fall several times today.  I would love to know what he
was thinking as he watched - wanted to ask but he instructed me to be quiet and
listen (smile).

Hospice nurse came by and visited with Ethan for about 30 - 45 minutes this morning.
She gets along well with Ethan and is always nice to have a professional opinion
now and then.

Had two outings today in spite of  the weather.  We timed it well, and went to lunch
at the "Old Spaghetti Factory".  Had a nice lunch with Grandma, Papa, and Dad.  As
usual, Ethan's manners and behavior are wonderful and he received kudos from
several of the staff.  Am amazed each time someone goes out of their way to say
something to him.  To bad it does not happen to all children all the time, might make a
big difference.  As we returned home, we stopped by Keyes Mane Design so Papa and
Ethan could get their hair cut. The owners (a family) are wonderful people and have for
many years been the only place many go.  Cindy and David have made Ethan feel
GREAT !  They talk and  joke with him and discuss things  -  how neat is that !   As we
were leaving my great cell service sent me a text.  It was Cindy from  Keyes asking
how Ethan was doing and sending prayers his way.  Cannot say enough about how
nice they are,  and they do a super job with your hair.

The events of the day have really made Ethan tired.  The evening finds us watching
an old VHS - "The Rescuers".  It was his request along with a fire in the fireplace.
A good family ending to the day.

Thanks to all of you for your  prayers and support.  There are several that I try
to thank for the extra they do, but in reality everyone has been great to Ethan.

Ethan from earlier summer
or fall 2013.

Update # 73

Just a short note on Ethan's condition.  His vision is still
a major concern for him.  He asks if it will get better and
the answer is hard.  His large motor skills bounce from
weak to uncontrolled.  He often has small muscle tremors
and unexplained muscle jerking.  He requires assistance
to stand and walk and uses his chair (type of wheelchair)
for all travels of any distance.  He still has issues with
swallowing and all liquids must be thickened.  His
speech is at times very hard to understand and he tells
us his mouth won't say the words right.  Small motor
skills are the hardest for him, and he sometimes needs help
eating.  Holding pencils or crayons is very difficult and
the look he gives you is hard to explain. The facial
palsy on the left side is still here but not any worse.
He still loves stories, TV,  music,  games,  and hugging
Grandma.

We all continue to thank you for your prayers and
support.  Special thanks to Tom & Karen for being
there and Dave & Wendy who have provided
Ethan with so much joy.

Ethan in the driver's seat  at the
Autopia Ride in Disneyland.

October 2013

Update # 72

It's Wednesday evening, Ethan and Dad are watching
TV and all seems well.  Hospice stopped by today and
all seems to be okay.  Ethan has a bit of a cold but lungs
seem clear and breathing appears to be normal.

I  found an item on one of the social networks and
thought it was something to think about, so will post it
with this post.

Ethan has been playing a lot and continues to enjoy
his (books) stories.  He received a new one recently
and is quite excited about it. Thanks Tom and Karen,
again you are right on target.

Thanks to all for your prayers and support.  As each day
passes we continue to be amazed !  Thank  You  !

Always good to keep focused.

Update # 71

Was spending some time looking at photos with
Ethan from his recent birthday.  We like this one,
yes I'm hooked.  What a terrific grandson !

November 2013

Ethan and Papa with his specific
requested birthday cake.                     

Update # 70

Having a pretty laid back morning today.  Yesterday was a long
day with a trip to CHLA and some time at Griffith Observatory
in the early evening.

The visit at CHLA was longer than planned.  His port would
not access as we had wanted, so some extra work and time to
get everything working for blood draws.  Time waiting is the
hardest for Ethan.  His mental set is always "in and out", and
works well when everything is good.  But if anything goes
wrong or is off schedule - he gets a  pretty nasty attitude.
Most of the attitude, like the weight, is a side effect of one of
his drugs which ends tomorrow (yea ! ).  Gradually his own
behavior and attitude will return ( smile ).

When we were ready to leave LA it was 4:30 and a traffic
nightmare.  So Ethan picked In and Out for eating and then
we went up to Griffith Observatory for the evening views.
Dinner was fine and the views were super.  Ethan was totally
impressed with all the lights of LA as seen from the hilltop.
He was "look at that, and look over there ...", was fun to
watch him enjoy it.

About 7:45 we loaded up and headed home.  Traffic was
not to bad and the trip only took about an hour and a half.
Ethan sleep most of the return trip and was ready to play
when we got home.

Ethan is about the same as last week and is gradually getting
use to being in the "chair" for longer distances.  He does not
like how things are going, but who would !

Thanks to all for your prayers and support, and special thanks to
Dave and Wendy for a very special birthday.  And I also want to
thank all the folks at CHLA that just drop everything and chat with
Ethan when he pops in unannounced.

Ethan opening gifts on his
6th birthday.

3 Nov.  2013

Ethan looking at the lights of L.A.
from Griffith Observatory.

6 Nov.  2013

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

Update # 60

Ethan is having a pretty good today,  so Dad (Kent) decided to try an outing.
Ethan, Dad, and Grandma took off to the "Pumpkin Patch".  This is an event
that Ethan has enjoyed in the past so .....

It did not last as long as we had hoped, and he was not up to trying the maze
even with help.  But his mood was good and  all had a few laughs.  The
progression of his illness and the extra weight caused from his meds
make a lot of activities difficult at best.

When he got home, he discovered a postcard had arrived for him in the mail.
It had a picture of a roadrunner on the front and a real nice note from Dave and Wendy
on the back.  He thinks they are pretty cool !

We continue to thank all of you for your prayers and support.  It is amazing how
something like a card can bring such a smile - Thank You all !

Ethan and Dad (Kent) on top
of hay bails at the pumpkin
patch.

30  Sept. 2013

Loves his Tennessee hat !

Update # 59

We got another phone call from CHLA Thursday evening.  His
next planned med trial has been stopped.  No one will be getting it
per the powers to be.  They want us to come in Tuesday for vision
checks etc. and then again Wednesday.  Not clear what is planned
for Wednesday yet - but I am sure some waiting will be in order.

Ethan continues to have balance, vision, and swallowing issues.
Due to some of the meds he is currently taking, he is ALWAYS
hungry and has put on quite a bit of weight.  With the weight
gain comes stress in breathing and moving.  I feel so sorry for him.
They directed us to make a reduction in his meds now with more to
come soon.  Hopefully this will have the same effect as it did in
June and the hunger, breathing, and weight will return to normal soon.

We (Grandma, Papa, Ethan) went to the public library today.  It was
quite the event, he does like books.  Ended up reading some and
returned home with 6 others.  Guess what we will be doing this p.m.

Thanks for your prayers and support, they mean everything to us.
More to come soon...

Update # 58

Surprise !  Received a couple of Tuesday evening calls which resulted
in our not going to CHLA today.  As Ethan is moved from one med to
another, it seems there is some more information the researchers need.
In addition to his last lab tests, they are concerned with how long he
has been on the meds he is using now.  They also want to see if he will
stabilize some physically first.  We are to continue keeping records, call them
if needed, and plan on Wednesday Oct.  2 for Ethan's next visit.

Will see how it goes.  He continues to eat a lot,  be very moody,  and have
balance,  swallowing,  and vision issues. 

Thank you all for your prayers and support.  We all appreciate it more than
our words can express.  THANK YOU.

Update # 57

Tuesday morning and Ethan has informed us that today he feels will be a
TV day.  As he realizes what he can and cannot do (reluctantly) he goes
about organizing his day.  He often tells us through tears that he does not
like things that are happening and he is frustrated !  We agree and (reluctantly)
try and help organize his day.

He has put on more weight and is constantly hungry (not really), which is a side
effect of  his meds.  So we try and feed him and at the same time keep him
as busy / occupied as possible to keep his mind off of it.  He is also dealing with
the inability to do so many of the things he could do not that long ago.  Ethan does
very well in adjusting to his abilities but gets very frustrated at times.

Wednesday is our regular trip / visit to CHLA.  Ethan knows this and is already
getting himself mentally ready for the experience.  Due to recent changes in his
health and med trials, he will have labs and a team meeting. He use to have team
meetings monthly, but this will be three weeks in a row.  Ethan thinks the doctors
are nervous and that is why they want to see him again.  To his credit, he almost
always has a good attitude and behavior when with them.

Not sure why, but Ethan has become a real "Bill Cosby Show" fan.  Toss in a
snack of fruit and juice and he is one happy camper.  At times he laughs so loud
that you can hear him in another room.  Thanks Bill Cosby !

Thanks again for all the prayers and support.  And a special thanks to Karen and
Tom for spending an evening getting us out for dinner and some "friends" time.
We really enjoyed it,  your friendship is very special to us - thank you!

Ethan having a snack while watching the
"Bill Cosby Show".

9-24-2013

Update # 56

Another Wednesday, which means a trip to CHLA for labs and another meeting with the team. Today's  results are to reduce the meds he is taking now, and delay until next week the new meds. He is still having balance, vision,  and swallowing issues.  His mood goes from wild happy to sad and crying at the drop of a hat.  He gets VERY frustrated with what is happening as he knows something is wrong but he cannot fix it.  He is also aware that last time he was like this he was hospitalized.  He
told his Dad today that he does not ever want to stay there (hospital) again - wow !

We continue to be blessed with prayers and support from so many, thank you all very much.  We are taking each day as it comes and know that what needs to be will be.  Again, THANK YOU.

Ethan on the floor letting Papa know that the ball game is about to start.

1  Sept.  2013

Update # 55

It's almost lunch time here and Ethan is into his first of what recently
has been 2 or 3 naps.  One of his doctors gave him a "build a bear"
which he likes to keep close.  The bear is like him, if you feel the
back of his head you can feel the "shunt" and on his chest you can feel
his "port".  Because they are the same Ethan keeps him close and talks
to him about how "they" are feeling.

As of now Ethan continues to have balance issues, vision issues, all
liquids need to be thickened, he has mood issues and cries because he
cannot do some things.  Part of this is due to the tumor's growth and
some is due to the meds he is currently taking.

Ethan is scheduled to have lab work and another visit with the team this
Wednesday.  Some difficult decisions for parents and doctors loom
ahead.  Thank you all for your prayers and support, all involved will need them
in the days ahead.

Ethan and his "build- a - bear"
in a power nap.

16  Sept.  2013

Update # 54

Cannot believe it,  Friday the13th.  Oh well - all is good here considering.
Ethan continues to have balance and vision problems.  He tries to do
things on his own, but will take a hand or ask for help on occasion.  His
attitude is awesome, better than mine on most occasions (smile).  He asked
if the whole family could go to a lunch buffet today.  So off to Palm Springs
and the Indian Casino for eats.  Funny how at 5 years old he can be amazed
by the amount of food available to eat.  This morning Ethan and I (Papa) did
some photo work on the computer. Attached is one of Ethan and Grandma.

Thanks again for all your prayers and support, it means so much to us.

Ethan and Grandma near the
Queen Mary in Long Beach

Sept.  3,  2013

(photo after being cartoon - ized)

Update # 53

Today was the big day, and it lived up ( or down ) to all our expectations.
What was suppose to be a quick lab followed by a meeting with the team
did not follow plan.  The meeting was first, followed by a second meeting,
followed by lab work, followed by a meeting, and then about 2:00 they
headed home.

The news :  Ethan's tumor is growing again.  If nothing is done his time with
us is going to be very short.  So, they are going to try a med combo to see if
it will stabilize him and next week try his weekly meds again.  If he is not
stabilized, we are looking at quality of life and options for palliative care.

Today marks 180 days that he has blessed us  beyond what was to be.  This
afternoon / evening we all played, did puzzles, laughed, and had a great evening.
He asked us if we remembered eating fish dinner at Long Beach last week.
He said he really liked that so here is that photo.

Sept.  3,  2013 at Long Beach, Ca.

At what I think is called
Parker's Light House Restaurant.





We want to thank all of you who continue to pray and offer support for Ethan.
We are truly blessed with world class friends and family.  THANK YOU !

Update # 52

Left Riverside at 6 a.m. for a drive to CHLA.  They had an opening for a
MRI  etc.  this a.m.  Arrived at CHLA about 8:50,  now we wait to get in.

Getting in the car and starting the drive back to Riverside at 1:00 p.m.
Ethan's mood is better, but he is so tired.  They will review today's results and that
will be a large part of our Wednesday visit.  Ethan usually has lab work each
Wednesday and a team meeting monthly.  Last Wednesday,  the 4th,  was our regular
team meeting. We will have another on Sept.  11th.

Thanks to all for your thoughts, prayers, and support.  And a special thank you to
Tom and Karen,  hope you realize how special your friendship is to us !

* * * * * * * * *
Afternoon update to update

Ethan's doctor called and said - yes there is some swelling but not sure of
the cause yet.  Keep an eye on him, and allow him to have as normal a week-end
as he wants.  See you all on Wednesday.  Good week-end news !  Ethan is
actually better today than he was last Wednesday - go figure.   Thanks again to
all of you for the positive thoughts and prayers.

Update # 51

Trying to find a way to say where we stand without making it sound too bad.
Went down to LA Tuesday evening thanks to a room available at the Ronald
McDonald House.

Wednesday morning went to CHLA and did the lab work and a meds  test.  We
had to wait for a bit before our appointment with the team ( Ethan's Dr's and staff ).
Ethan's blood work numbers were all wrong, they think it must have been a bad draw.
This meant Ethan needed a second lab work up.  He lost it, crying and saying
no.  His reason - "I only planned for one, I can't do more today".  Only 5 years
old and already working out stress / fear strategies on his own !   Bottom line,  no
new labs today, which also means no new weeks meds.  His lead Dr. believes his
balance issues, eye sight issues, might be his tumor growing - but not sure.  They also
want us to start thickener in his liquids again.  We are waiting at home for a new
MRI and possible other tests to help confirm  what no one in the room wanted to say.

Tests will be scheduled as soon as there is an opening, but no matter what we
have another team / family meeting next Wednesday.  Until then thanks again for
your prayers and support. 

L  to  R

Dad (Kent),  Grandpa,  Grandma,
Ethan,  Uncle Keith.


9-2-2013

Update # 50

Well it is Friday - a day with special meaning to everyone.  To many it
is the end of the week, and so it is to Ethan.  He is SO looking forward
to a three day week-end.  We are still aware of his balance being off
a bit, and he has commented that sometimes as he walks he feels off
balance.  Hope this is not something bad, will be calling CHLA this A.M.

Last night Ethan wanted to do the "slide show" off iPhoto of his pictures.
He laughs and makes comments about various photos as they move across
the screen.  Last night, he asked me (Papa) to help him make a cartoon picture
of him.  He spent quite some time finding just the right picture, and then we did
our thing.  He was happy, made a copy for Dad (Kent), and also
made it our new desktop / screen saver.

Hope you all have a good and safe week-end.  Thanks again for your prayers
and support -

Ethan and Dad in cartoon view.

He picked this photo because he is
with Dad and they are happy.  He sure knows how to touch our hearts !

8 - 29-2013

Update # 49

Well our drive in to LA was uneventful (yeah !).  We got up this morning
and went to CHLA for our lab work - got in and out with zero issues.  Ethan
is having some balance issues - has Grandpa and Grandma a bit worried.
Made notes and contacted CHLA.  Info :  keep an eye on him and hopefully
he is just tired.  Will meet with his Dr. team next Wednesday.

Even though he was a bit "off",  he wanted to see the dinosaurs at the LA
Museum next to USC.  The visit did not last all that long,  he got tired and was
not real stable.  Ethan enjoyed what he did see and wants to return again.

As we were leaving the museum, Ethan fell asleep and did not awaken until we
pulled into the driveway at home.  I am thinking that some of his unstable
walking today could be stress related.  He did not sleep real well Tuesday
night and he asked several times if today was lab only or extra stuff.  I cannot
imagine what  must be going through his head with all this process.

Again - thanks to all who continue to pray and support Ethan, we could not
do all this without you.

Ethan with dino display at LA County Museum

8-28-2013

Update # 48

Ethan's first day of school was very good - but very exhausting.  He fell
asleep in the car before leaving the school parking lot !  He did not get up
until 5 pm and wanted nothing to do with going to a ball game.  So ...  Uncle
Keith, Grandma, and Grandpa went for him.  We took his shirt, ball and glove
and went searching for autographs.  Ethan wanted autographs of all the players,
plus the two TV guys that he sees on every game.  We struck out, not even a glance
from one player.  As we were leaving we met someone who said their boss would try
and help us.  We left Ethan's stuff and went home.  Two days later we get a
package from Mr. Brian Sanders,  Sr. Director Ballpark Operations.  Inside
was Ethan's shirt signed by Victor Rojas and Mark Gubicza (the TV guys).
And his baseball with several player autographs.  This is one very nice man.
Ethan now has exactly what he wanted - thank you Brian Sanders and
Angel's Baseball !

Tuesday is a short school day, which is good for us.  We will make our weekly
trip to CHLA and stay at Ronald McDonald House.  Then get up and do lab work
early Wednesday morning.  Then back home and rest for school on Thursday.
Again thanks to all who continue to pray and support Ethan, it means everything to us. 

Update # 47

Well the day has arrived.  Ethan has wanted to return to school for the
better part of two months now.  So, today is his first official day of
Kindergarten !  As eager as he was to go, you could also see he was a
bit nervous.  But after getting there, a hug from Grandma, and seeing
friends from last year - all was good.  Can't wait till he returns and hear
his "take" on his first day.

Later this evening we are going to an Angel baseball game.  We were provided
tickets right behind the Angel dugout - WOW !  Hope to get a picture or two and
maybe an autograph.

Want to continue to thank all of you for your prayers and support.  Ethan continues
to face many hurdles and we know any and all success is in large part due to you.
THANK YOU.   Ethan also wants to thank David for the great haircut - really
helped with the first day jitters.

Ethan as he heads out for his first day
of Kindergarten !       

 8-19-2013

Update # 46

Just finished up what I think was our best / fastest trips to LA to date.
Went in Tuesday evening thanks to Ronald McDonald House having
a room for us.  Got up and around early , ate breakfast, visited some
friends ( CHLA staff ) and had Ethan's lab work done.  All went well and
we got on the road back home.  We arrived home with time to clean up,
unpack and relax before lunch !  Love it when a plan comes together !

Make-A-Wish put together a Disneyland pass for Ethan,  so Dad has taken
Ethan there twice.  It was great - rides, sights, fireworks, and so much to see.
I really enjoy the "Jungle Cruise", "The Tiki Room", "The Merry-Go-Round",
and "It's A Small World".  Dad told Ethan there is much more to see and do,
so  guess we'll have to go again.

Ethan in the boat ready to enter Small World.

Ethan on the Merry-Go-Round at Disneyland.

Update # 45

Another Wednesday has come and gone.  August 7th will be remembered by
us as one of the longer ones we have had .  We drove Ethan to LA on Tuesday
evening as we were lucky to get a room at the Ronald McDonald House.  We
got up Wednesday with  enough time to eat breakfast and get to CHLA on
time for our 8:30 appointment.  We had two "breathing" treatments which Ethan
has had before, but this time it involved new meds.  Then Ethan had his regular
blood work and then the wait for his "team meeting".  When we met with his
lead doctor,  she was VERY happy that his blood work had made major
improvements and his overall check up was good.  Due to his recent blood tests
etc. the "team" has made some changes to his meds and the time schedule. Ethan
will continue with his weekly lab schedule and his new meds schedule.  Lead
doctor will see him in one month if all goes well - and it will !

Because he is part of a clinical trial, his meds are specially made for him at
CHLA on the scheduled Wednesday.  Due to the weeks skip and the med changes,
they were not sure what meds to make, which required us to wait for just over
3.5 hours to get them.  But time was not wasted, Ronald McDonald House was
hosting a carnival for all the children there that day.  Ethan played games, won a
few prizes, got to ride a real horse, and had some food.  What more could you
ask for ?

Due to traffic and a long day at CHLA, we got back to Riverside about 8:30 pm.
Ethan was happy to be home, in his own bed, and with his own family.  We as
always want to thank everyone for their prayers and support.  We have extended
the time line further than expected and the outlook is good - THANK YOU ALL ! 

Ethan riding his first horse.  At the
Ronald McDonald House  8-7-2013

Ethan and Grandma sitting on the many carved
creature seats located throughout CHLA.
8-7-2013

Update # 44

Joined Ethan for dinner  hosted by "Make A Wish Foundation"  This is one
of those wonderful organizations that we all know of but do not truly appreciate
until  ...

Tonight they hosted dinner at Macaroni Grill and had a special Super Hero show up
to visit (Captain America).  Ethan passed the test and became an official assistant
(complete Capt. America outfit).  He was really excited and very happy.  We feel that
between the Super Hero and the many other gifts, this was truly an evening Ethan will 
not forget !

We also need to say thanks to the Macaroni Grill and their staff for really going  along
with the whole process and making the evening such a success - Thank You.

Big sign across wall of Macaroni Grill

Captain America arrives to meet Ethan

Captain America and his new assistant

exchanging autographs

Just having a real good time !

Update # 43

It took us about 1.5 hours to get to CHLA today.  Big surprise to me for a Friday.
The MRI only took about 45 minutes and Ethan just relaxed and watched a movie.
As we left CHLA,  we all agreed to get something to eat before we joined the traffic
exiting LA on a Friday evening.  Half way through dinner Ethan fell asleep - little
fellow sure is heavy as dead weight !  Took 2 hours and 5 minutes to get home, could
have been a lot worse.  Again thanks to all who have mentioned Ethan in prayer and
for your support - you are all GREAT.

  Ethan and Grandpa outside of
 CHLA.  Ethan really likes this
sign - always comments about it.

Update # 42

This week we had two different days that we needed to be at CHLA.  Thank you
Ronald McDonald House for coming through with a room .  We were not looking
forward to back to back round trips to LA.

Tuesday :  Went to CHLA for an MRI.  When we got there Dad (Kent) questioned
the nurses and techs about what they were saying vs what we had been told.  The
proceedure was held up for over an hour as Kent kept asking questions and wanting
answers before he would let them continue.  Pulled in several doctors and did a reread
of the clinical trial guidelines.  We finally came to an agreement and Kent said okay.
Also, they did the blood work so they would not have to do it on Wednesday A.M..
This was nice for Ethan, it also allowed them more time to view the results.

Wednesday :  Went in to meet with the team of doctors.  Ended up waiting an hour as
some of the doctors were late getting there.  Ethan's blood work showed that his white
blood cell count was low, so they are not going to give him meds this week as was
the plan.  This will allow him and extra week for the white cell count to improve.  The
new plan has Ethan starting his meds again next week - they hope.  They also want
Ethan to have another MRI on Friday.  It will be a different type / view and they want to
look at something ( ? ).  Other than that, they are all good with his progress and his
attitude.

These two days upset Ethan (first time) and also caused Dad (Kent) to be a bit
upset.  We understand that being on a clinical trial has its own set of concerns,
but we need good communication to keep concerns / questions in check.  But
over all, we are REAL happy with how everything has been going and how well
Ethan and family have been treated and attempted to be kept in the information
loop.

To keep our smiles going, Dad, Ethan, and Grandma went to Griffith Park for a bit.
Ended up relaxing for a bit, looking at the trees and clouds , listening to the wind.  Then
we found the amusement area - oh yeah !  Had some fun there then headed back
home.  What a couple of days.  Thanks again to all of you for your prayers and
support.  We could not do this without you being there.

Ethan and Dad (Kent) at Griffith Park
amusement area

7-31-2013

Ready for the train ride at Griffith Park

Ethan and Dad (Kent) 

7-31-2013