Update # 141

I think it is time to close out this blog.  I am not sure
what I will do with it, have received several suggestions
and will think about them in the days to come.

Ethan's services were held on Monday 8 September.
Grandma  and I did not attend, having said our good-by
with him privately.  We will in time visit the cemetery - just
not yet.

I guess it is human nature to try and express sympathy to those
you know who have experienced a loss.  And through all of this
the most meaningful to me have been from those who share that
they are without words.  That is fine, more than fine in fact,  as we
as a family find ourselves that way also.  Thank you !


Because it is our loss, I tell myself there is no answer to -  why ?
I also am good with not knowing,  somethings should be beyond
human understanding.  It  IS  what your faith is based upon and about.
However,  I received a photo from someone in Israel that I will share at the
bottom of this post.  I do not know the woman who sent this picture
but she has followed Ethan's blog and felt that this is what Ethan
was sharing with me.  He was such a sweet boy and perhaps he
was renewing the softness to my heart.  Thank you.

I will keep the blog up for a while, so please post if you wish to
and thank all of you, from all around the world, who helped Ethan
through his final time with us.

This is not Ethan, but
the message is !

17 Sept. 2014

Update # 140

One week ago today, Ethan passed away.  During this
past week I have missed him  terribly and often ask myself
why this had to happen.  I do not have an answer,  nor
do I actually want one.

His Dad (Kent),  Uncle Keith,  Grandma,  and Papa
(myself) are doing quite well.  We are humbled by
the kindness and support that has come our way.  We
see and feel Ethan around us constantly  and are
amazed at how he seems to have touched so many of you
as well.  Perhaps that touch was his reason for being here,  his
way of making every one's life a bit nicer.  It does not
matter that I am his Papa, I think he was quite an
amazing young boy !

I still do not have any "for sure"  information on
services, still waiting for that.  For those of you who ask
about what you can do or how you can donate in Ethan's honor,
I have listed two wonderful suggestions in blog # 139.

We again want to thank all of you for your prayers
and support. 

Post # 139

I've been asked to provide an address for possible
donations in the memory of Ethan.   Listed below
are two suggestions that I have praised several times
in this blog.


1.     Dr. Anat Epstein's Lab at Children's Hospital Los Angeles
        can be done on-line at  :   chla.org

2.     Southern California Hospice Foundation
        can be done on-line at  :  socalhospicefoundation.com


Thank you so much for your consideration of either of these sites.

I would also like to thank all of you who have and continue to
provide support and prayers,   our family is very thankful.

Update # 138

I am sad to say that my special buddy / grandson Ethan
passed away this afternoon.

      Ethan Marcus Collins
      3 Nov. 2007  -  29 Aug. 2014

I cannot think of anything to say, will try another day.

Thank all of you for your support and prayers.

Update # 137

Ethan's Day  532

Wednesday evening and night were difficult for Ethan.  He
was having a hard time breathing and saliva was building
up in his throat.  Thursday morning was a real rough time
for Ethan.  Thank goodness we have a great nurse (Marta)
and our involvement with So. California Hospice Foundation.
We have had a doctor, round the clock nurse time and lots
of calm support from all of them.  A Great Team !

Thursday evening saw Ethan a bit calmer and resting.  His
breathing is so shallow, it is almost scary.  I fear his battle
with DIPG may be coming to an end (very sad face).  His
lead doctor (and friend) Dr. Epstein has come by to see Ethan.
A long drive in holiday traffic and still she came.

Will keep you all informed as news becomes available.  As of
now he is resting and seems comfortable.

As always we thank you all for your support and prayers.  And
a special thank you to all the medical people that have helped
these past two days and So. California Hospice Foundation.

Update # 136

Ethan and Papa have an on-going conversation happening.  We have been

talking about Blog post # 135.  He likes the map and we have great

moments as we discuss where Ethan is in relation to visitors to this

Blog.  The conversation is very difficult as Ethan has very little to

no speech available.  It turns into short statements followed by positive

or negative gestures from Ethan.  Hard but not impossible to keep

his thoughts going.  Time becomes the biggest barrier as he becomes

frustrated when we do not understand what he is trying to say.

Ethan's current desire with this blog is to tell some of our most

recent visitors from outside the USA  hello.  Below is his request

in Ukrainian, Russian, Spanish, Polish, and German.  We will keep 

you informed if he gets any replies - hope so.

          Ethan wants to thank you for taking the time to view 

          his blog.  When you view and comment ( please ) it 

          really makes him happy.  Thank you and have a good day.

We hope the translations are accurate and we look forward to hearing

from you.  Thanks for keeping Ethan and his family in your  thoughts 

and prayers.

Update # 135

Ethan has now reached day  #   526   !

This past week has seen Ethan dealing with several issues.
He is experiencing  a lack of controlled movement from the
right side of his body.  Both his arm and leg have very little
movement on their own.  His food  intake (mostly liquid)
has dropped over the past few days.  He wasn't taking that
much to begin with so this is a big concern for us.  But he
continues to have a great attitude and makes us all smile when
with him.

Some time back, Papa's friend Rita sent Ethan a package
with some USMC stuff in it.  There was a hologram card in it
that continues to be a favorite along with a cloth with the
USMC emblem on it.  We want to thank Rita again along
with her great helpers from back east - you have provided
many great moments.

This past week Ethan received two cards from Alisha (Ducky).
They met at CHLA and she continues to be a smile maker
for Ethan.  She even remembered him while on vacation in
Colorado - Wow  !

Ethan is truly a world traveler.  This blog has had 9665 views.
Some countries viewing are Kazakhstan = 248, Russia = 164,
Germany = 86 , United Kingdom = 57,  Turkey = 30,
Poland = 21,  Greece / Israel = 20, China = 19, Korea = 11,
S. Africa = 7.    Totally amazes us all, but thank you all for
taking the time to check on Ethan and for several
very nice comments that you have left us.


We want to thank everyone for their support and prayers,
Ethan and family are very grateful.

The map Ethan and Papa
keep to show blog views.
Thank all of you !

Update # 134

We have finished our weight check for Ethan.    His current
weight is 37.7 lbs. ( 17.1 kg. ) . That is a  0.7 lbs.  ( 0.3 kg. )
drop from his last weight on 3 August.  We also checked his
height,  he is now 48.5 inches ( 123.19 cm )    tall.

This past week-end has seen Ethan eating a little less than
has been his normal amount.  But over all he seems happy
and as usual - no complaints !

Ethan recently received a package from Russ Turner,  he use
to teach school with Grandma.  He always sends me
something unique!  Included in this package was a picture
of his son-in-law Tony.   He is a pro basketball player in Korea.
The picture is autographed and everything !  Ethan enjoys watching
sports on TV  and basketball is one of the games he enjoys.
GO  TONY  !

Ethan has not got to be outside much this week.  The heat is too
much for him.  He did get out one evening to deliver some
tomatoes and hot chilies to our neighbors Betty and Lupe.
This is an enjoyable event for Ethan and they have always been
very nice with him.

We received a phone call today from Ethan's lead doctor at
CHLA.  Dr. Epstein called to check in and talk about Ethan.  She
had been gone for a while and when she returned she called.  Ethan
still calls her his friend - so very cool.

We want to thank everyone for all of the prayers and support
that we receive.  We are very fortunate to have such good
friends and family - thank you.

Ethan and most of his
collection of stuffed
animals.

18 Aug.  2014

Update # 133

Day  516  and Ethan continues to roll on  !

Ethan's family, his doctors, and supporters are all pretty happy.
By most results and histories, less than 10 % of DIPG
patients survive past 18 months.  As of today,  Ethan is
12 days past the 18 month marker - Yea  !!!!

Ethan continues to get mail which pleases him a lot.  His
most recent mail was a package from Grandma's friend
Marge,  a package that had books in it.   This is great
as Ethan loves to have books read to him.

To every one's surprise,  Papa did some shopping when he
got out the other day.  He got Ethan some "Superman" sheets
for his bed.  This turned out to be a good thing as Ethan liked
getting a gift,  and he also likes all kinds of super heroes.

This past week-end Ethan hung out with his Dad and did some
guy time watching TV and reading books.  While they were
busy Grandma and Papa went out to dinner with good friends
Tom & Karen.  The food was good and the company was
great.  Thanks to Tom & Karen for clearing the schedule and
getting us out for a bit,  it was over too quick but good  none
the less.

As always, we close our notes with a thank you to everyone
who continues to support and pray for Ethan and his family.
It means a lot to all of us.

Update # 132

Today is Ethan's  "Day 512".

Ethan  has had an up and down week.  Overall Ethan continues
to have good days.  He enjoys life to the extent that he can and
always finds something / someone to smile with.  But over the
past few days he has experienced what I refer to as body tremors.
They seem to be mostly on his right side, his leg mostly but also
sometimes in his arm as well.  This morning he has had them in
both arm and leg at the same time.  A bit unsettling  for Ethan
and us as well.  He does not have any real pain with them, but
I assume they are much like a muscle cramp that we all have
had at one time or another.  Must be scary for him though ...

Ethan is lucky to have received some very special cards from
Logan and Tristan in the past.  Because they are both serving
in the US military overseas, Ethan and I have just sent them
a "care package".  Ethan had a ball telling me what to put in
the box and how many.  His wants and the box size did not
always match, but the packing is complete.  He enjoyed the
mailing of this package as much as he enjoys getting mail.
It was really fun for me watching him go through this whole
activity - enjoy it guys !

Also, this past week has seen several cards from Karen and Tom.
They are very nice and always seem to know just the right
card to excite Ethan.  Thank you both very much !

Last night Ethan and his Dad (Kent) were watching the
Angels  vs  Red Soxs on TV.  There were a couple of minutes
at different points in the game when they were both making so
much noise,  you would of thought they were really at the game.
Ethan enjoys seeing outfielders jump for a ball or when infielders
slide to catch a ball.  Great baseball fan (smile).

We continue to be thankful for the support and prayers from
so many, thank you all so much.  Ethan sends a high five  to
all of you.

Update # 131

Day 506 and all is well in Ethan's space.

It has been a long but good week for Ethan.  There has been
laughs and moments of real quiet, but Ethan continues with
his desire to live life.

Earlier today we did a weight check on Ethan.  His weight
continues to stay about the same.  Today his weight is 38.4
pounds  ( 17.4  kg ).  This is 0.4 lbs  ( 0.1 kg ) less than his
last weight about mid July.  He has grown taller, but we have
not checked for an exact amount lately.

Ethan and Grandma have been getting a lot of tomatoes from
their garden.  Enough that Ethan has delivered some to the
neighbors.  This is both fun and sad for Ethan.  He really
likes taking them to our neighbors,  but is a bit sad being stuck
in his wheelchair in front of them.  He is VERY aware of his
appearance in front of others.  He really does not like people
(strangers) staring at him.  Does not like being perceived as
different, less than normal.

Yesterday Ethan and Papa watched a video about Robin Hood
while Grandma and Dad (Kent) was gone shopping.  It was
the Disney animal version.  When the DVD was over,
Ethan and Papa shot foam arrows at each other and had a
toy sword fight.  As is usually the case, Papa lost with much
fan fare and Grandma and Dad busted us for playing so loud
and wild.   Papa is fun to play with, but almost always gets
caught when breaking the rules ( smile ).

We wish to thank all of you for your support and prayers,
it means a lot to all of us.

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.

Update # 125

Day 470 and Ethan continues to set the bar higher.

Ethan has had a good past few days.  His ability to eat
goes from easy and a lot to difficult and not very much.
He still continues to hover about 38 lbs   (17.2 kg)  so
I guess he is okay.

His left eye has become quite red and waters  a lot.  His
nurse ( Marta ) got him some eye medicine and hopefully
that will clear up quickly.

The past couple of days Ethan has been really into watching
the DVD "Mulan".  Seems as if the want has changed again.
He usually has several days in a row where he wants one
specific DVD or genre then will totally switch to something
different.

Yesterday afternoon Ethan agreed to stay with Dad ( Kent )
and let Grandma and Papa go out for some time with good
friends Tom & Karen.  We had a bit to eat and was back
to see him before bed.  Ethan also got to visit a short time
with Tom and Karen and showed them his "Camel" card.
A card that Ethan thinks is special which just happens to
be from Tom & Karen's son Logan - very cool !

We continue to be thankful for the prayers and support
we continue to receive.  We are also lucky to have great family
and friends - thanks Tom and Karen.

Update # 124

Just a quick post on this Saturday morning.  Ethan went to bed
Friday night happy and smiling and is still the same this morning.

The big laughs came yesterday via the mail.  Ethan received a card
from Kuwait.  A very special friend was passing through there as
he travels to some other strange and unusual place.  It was really
nice that he remembered me in his busy day,  and the card was
great.  The picture of a camel wearing sun glasses and a scarf,
looking all cool,  was just too funny.  Ethan really found it funny
and had to show everyone for the rest of the day.  Thanks Logan !

This morning when Ethan got up he had an Angel Baseball cowboy
hat and an Angel baseball.  Uncle Keith went to the Angel ballgame
last night and brought these items back for him -  WOW -  what a
great uncle ! 

Ethan continues to check out the garden and as always is interested
in what is harvested.  Our big issue now is that Ethan wants to eat
the goodies, but is not physically able to.  What a sad position  to
be in.  Just does not seem fair to go through this - but he gets over it
and moves on.  I think there is a lesson for me in there, he is such
an amazing young boy.

Thank you for your prayers and support.  We are as always very
grateful.

Update # 123

Day 460 and all is well !

It has been a week of exciting events at Ethan's house.
We all enjoyed a happy father's day,  then we had Papa's
(me) birthday.  Also during this week, Ethan received
phone calls from Dr. Brooke (his local doctor) and  also
Dr. Epstein (his lead doctor from CHLA).  Both are
really happy with how Ethan is doing and how long he
has been doing it.  Ethan continues to push the norm for
what so many expected.

Ethan continues to receive mail from so many people
and from all around the world.  To those that have sent
Ethan mail,  thank you.  He really enjoys the cards
(posted all around the house) but he also enjoys being
shown on the map where he is and where the card came
from.  And your comments have been very nice - again
thank you.

Ethan's garden has really started to take off.  He enjoys
watching it grow and seeing the harvest that Grandma
collects.  He had a big smile today as we send our neighbors
some squash and peppers.  This is an act that has taken place
for several years and Ethan enjoys giving them "his stuff".
They enjoy the goodies and make a big deal of it to Ethan.
We have Really Good Neighbors - Thanks Lupe & Betty.

We did our measurements today.  Ethan's weight has dropped
to 38 pounds  (17.2 kilograms)  but his height increased to
47 inches  (1.19 meters).

We continue to be blessed with your prayers and support.
Thank you all very much for keeping us in your thoughts
and actions.

A VERY casual Father's Day
pic of  Uncle Keith,  Kent (Dad),
Ethan,  Papa.

16 June 2014

 

Ethan giving a "thumbs up"
after giving  some chocolate
cake his best shot.  Note icing
on his lip.

Happy Birthday Papa

17 June  2014

Update # 122

Day 454 and Ethan continues to push the limits !

Ethan has had a pretty good week so far.  We quietly assess his
abilities each time we are with him, but formerly do so as
something happens or weekly.  We are totally aware that
he continues to decline physically,  but the speed at which
it takes place is also important to us.  His changes at times
happen quickly with several in a short time.  Other times they
are few and spaced apart.  This week has been a slow week
with only a couple noticeable changes over the past week.
To us, that is good news !

Ethan continues to receive mail.  Over this week,  he has received
about a dozen cards and one package.  The package helped Ethan
celebrate "flag day".  Thank you Russ and family.  He was a teacher
that worked with Grandma - real nice person !

Alisha came by to visit also.  Ethan really enjoys time with her and
she can always get a smile on Ethan's face.  She also brought him a
DVD - "Alvin and the Chipmunks".  Thank you Ducky.

Today Ethan got all excited when Grandma brought in some
harvest from their garden.  He helped select what would be planted
and really enjoys watching things grow and then picking them.
One of his favorites from past years has been carrots.  He helped
plant them,  them would pick - wash - and eat them.  This year
is no different except he cannot eat them.  It was so special
watching today as he gave his first picked carrot of the year to
our dog Chip.  We call laughed as Chip ate it fro Ethan's hand.

We continue to be blessed with prayers and support.  To all of you,
thank you very much.

Ethan taking a 10 a.m. power
nap Wednesday.  Such a neat
young guy.

11  June  2014

Update # 121

Day 449

The past couple of days have been very strange for Ethan.
Through this whole process to date, Ethan has exercised his
independence when ever possible.  However,  of late he wants
to be held,  hugged,  or have VERY close contact with either
Grandma or Dad.  He will out of the clear just start a very
weak cry .  He tells us nothing is wrong and he does not hurt ???

Yesterday,  his hospice nurse (Marta) said everything sounded
good,  but she could tell he was anxious.  His limited intake
has decreased a bit and he seems happiest to just be held.

Since Ethan's last post,  he has received about 35 cards in
the mail.  He received a couple from Washington, D.C.
Those cards came from Tom and Karen while on their trip.
Surprise, Surprise, guess who came by Friday for a visit ?
Yes, Tom and Karen.  They brought me (Ethan)  a really nice
T-shirt  and a pair of socks,  which gave him a really big smile !

Ethan was really happy late Friday afternoon.  As he was held by
Dad,  he watched Grandma in the (their) garden.  Yesterday
saw the picking of some hot peppers  and some yellow
squash.  Tomatoes are growing and will be ready soon.  The
garden has always been a Grandma / Ethan shared adventure.
He loves growing carrots,  pulling them from the earth,  and
eating them.  this season it is a more vicarious adventure for
Ethan,  but shared all the same.

We continue to be thankful for the prayers and support offered
by so many.  Thank you all very much.

Update # 120

Can you believe,  Day 444 and update  #  120,  WOW !

Ethan has been holding his own over the past few days.
He continues to spend most of his days listening to stories.
He usually selects the books to be read, he has very specific
wants.  He also likes to let Grandma surprise him with a story.
 He also enjoys stretching out on his soft mat (thanks hospice) and
watching TV or a special DVD.  We also try to get outside
before the heat arrives, he enjoys checking out his garden.  He has
tomatoes, peppers, carrots and squash growing already.

This past week was a good communication week for Ethan.  He
received a text message with photo.  Tom and Karen sent it on
their flight from the west coast to the east coast.  He also got
an e-mail from Central Park, N.Y..  Was very cool and enjoyed the
horse and feather very much !  In addition to that excitement,  he
received a package from Grandma's friend in northern California.
Marge sent Ethan four new books, all have been read and enjoyed
several times.  Then to top it all off,  Ethan received three special
post cards.  They came from England,  Scotland,  and Ireland.
All these contacts (text msg. and cards) mean a lot to Ethan, to all of
you who have made the time to do this for Ethan - Thank You !

We continue to be thankful for the prayers and support from so
many, thank you all very much.

How about a hug Grandma ?
One of Ethan's favorite things
to do !

1 June  2014

Update # 119

Day 438 and counting !

Ethan is back to his normal routine and behaviors.   He is
interacting as before with family and is smiling at the new
day.  We got Ethan's weight today, 41.3 lbs (18.7 kg).  So
from his last weight until today, he has only lost 0.3 lbs.
(0.1 kg).  That is very good news !

If their is a down side, it is frustration at his inability to
communicate with us.  He tries to talk, which is just
soft noises.  When we are unable to understand, we look
for possible clues and take a guess.  We are sometimes
correct and everyone is happy, but when we are wrong - we
try again until we get it or he (Ethan) gives up.  On occasion
he gets upset and it really shows.  His verbal noise gets louder
and he starts to fling his arms.  This really wears him out and
he usually is very calm or even naps briefly afterward.
It is not only frustrating for Ethan, but to the rest of the
family as well.

Ethan's  mail has slowed down,  only three last week and then
no mail over the holiday week-end.   Ethan discovered two
new movies this week-end.  He is very happy with  Emma
Thompson in "Nanny McPhee" and "Nanny McPhee Returns".
Watched them both on Sunday and Monday.  Thanks to
these two movies,  I can no longer use the phrase "when pigs fly".
Digging into my bag of phrases to use that will please Ethan.

We continue to be thankful for all the prayers and support from
so many.  Thank you all so much.

Update # 118

Day 433 - who could of guessed  ? 

The late afternoon of the 20th through the night of the 21st was a
second big scare with Ethan.  His breathing became VERY labored,
he had several uncontrolled body shakes ( not violent but lasting
about 15 - 30 seconds ), unable to get much of anything in
because of his lack of swallowing,  and he was overall very
uncomfortable.

We were all very surprised and super happy when Ethan awoke this
morning and had his special personality back and was showing no
signs of what was the day before.  This is the second time that he has
had a health issue and almost like magic he seems to will himself
back to how he was before !

When Marta, hospice nurse, came by to check on him this morning,
she was also surprised to see how he was doing.  He now has his
oxygen flow amount turned back down, and the frequency of his
breathing treatments are also reduced again.  Really glad Marta comes
by so often, great peace of mind for us.

Each night when Ethan goes to sleep, his ceiling has reflective stars
attached that glow for a bit after the lights are out.  He also has a
night lite type item that shines star shapes all around his room.
As I shared with his Dad, if the stars come out in his night sky,
all is well .  Ethan sure likes them - so they continue to shine.

Thanks to all for the prayers and support.  They obviously are
working in his behalf - Thank You .

Update # 117

Well it finally happened.  For the first time since we began
hospice,  Ethan displayed discomfort to the point of pain.
Hard for Ethan,  awkward for the family.  Our ability to
communicate is difficult at best,  but trying to determine
what is wrong or have Ethan tell us is almost impossible.

In addition to this (as if that is not enough),  Ethan has on
several occasions the past few days passed a small amount of
blood in his urine.  Does not seem to be any pain at time of
urination but scary to us all the same.

The good news is "hospice".  Our regular nurse Marta was here
very soon after our call.  She was calm,  knowledgeable,  and a
known face to Ethan.  In addition to her visit,  Ethan's doctor,
Dr. Mall,  came to visit Ethan.  Again,  on top of what is going
on and very reassuring to Ethan and family.  Ethan really likes
him as does the family !

I guess with all that is happening these past few days,  Ethan really
does demonstrate his bravery,  as his recent award proclaims. 

Ethan sat in his wheelchair on the back porch and watched Dad
give Chip (family dog) a bath this morning.  This was great fun for
Ethan but not as much for Dad or Chip.  But it was good to get
outside - no strong winds or real high heat.  It is good that we have
a central location for Ethan's oxygen machine and a long hose from it.

As always,  we are grateful for the continued prayers and support
that are offered for Ethan and the family.  Thank you all very much.

Update # 116

I have let time get the better of me, sorry.  Ethan has been
holding his own physically and his moods have been generally
good.

Ethan has been staying inside for the past week.  Between the
winds ( Ethan does not like them )  and the heat,  he has
stayed in doors.  This past week has been full of TV, music,
reading, computer time, and naps.  Full days yes, but he
does miss getting outside.

Ethan continues to receive mail.  Lately they have all been
from the U.S. and most from Southern California.  He enjoys
the pictures and looking to see where they are from.

Ethan had a friend from kindergarten come and visit this
past week.  It started out well, but he was quiet towards the
end.  He got sad because the friend was moving about and
playing with various toys and Ethan could not join him.  I
cannot imagine how hard this experience must be for Ethan,
so sad.

We continue to be thankful for the prayers and support that
come our way.  Will try and post again in a more timely
manner.  Thank you all.

Update # 115

Day 419 and Ethan continues to do well !  This little guy
never stops amazing me with his fight and humor as he
pushes back against some pretty tough odds.

Ethan's Dad and Uncle Keith just recently had their
birthday.  It was a fun day and Ethan did his best at
singing "Happy Birthday" to them both.  But the best
part was pulling his wheel chair up to the dinner table
for some "D Q "  birthday ice cream cake.  It was
a really good time for all !

Yesterday afternoon Ethan had a surprise visitor.
Ducky (Alisha) from CHLA came by for a visit.
In addition to an enjoyable visit for Ethan,  she
also brought Ethan a hand made book.  The story
was all about their meeting while at CHLA.  It was
a super gift that has been read several times already.

We recently did a weight check on Ethan.  He has
only lost 1 pound since last check.  He now weighs
41.6 lbs. ( 18.8 kg ).  But he has also gained length,
He also is trying very hard to talk.  Most of it is
still not understandable, but every once in a while
a word gets out.  Really exciting for us, but also
exciting for Ethan - he tries SO hard.

We as always are thankful for your prayers and support.
Without them and your friendships (Tom & Karen), Our
lives would truly be difficult.

Ethan listening / reading
stories on the laptop.  He
sure loves stories !

7  May  2014

Update # 114

The past five days have been good for Ethan.  His mood has been
generally up beat, and he has been caught laughing on several
occasions.  In addition he has been doing well with a lower dose
rate on his oxygen and even has periods of time with no extra
oxygen at all.

Ethan received a card from Alisha  (Ducky)  from CHLA  this
week.  He enjoys hearing from her and got a good laugh at
the art work she put on the card.  I think he likes the
" 3 and 3 " the most though !  Ethan also received a phone call
from his friend Dr. Epstein from CHLA as well.  She has kept in
contact with us and always makes us feel good about what is
going on.   Everyone  should be able to have contact with a
doctor that is as skilled, positive and optimistic as Dr. Epstein.
Ethan and us (the family) are truly fortunate !

On Friday Ethan had a short visit from Auntie Kay and Winston.
This was really enjoyable for all of us and Ethan got a special treat.
A while back, Ethan received several cards in the mail from China.
Turns out Winston knows some Chinese and was able to read some
and showed Ethan how to say " I Love You "  in Chinese - Wow
what a treat !

Ethan received a text message from the Willman's this week.  It
included a very neat picture of a "frog garden".  We had to count
the frogs and try and name some.  This is because of a past Ronald McDonald
House experience where Grandma named Papa and Ethan big burp and little burp.
It is all good and provided a great smile and laughs - thank you so much Karen !

We as always are thankful for the prayers and support that come our way.
This entire process would not be possible without them and you.

Update # 113

As we count for Ethan,  today marks day number 411.   It was also
a good day for Ethan,  and that is all that really matters.

Ethan was able to begin his day in a very relaxed manner.  There
was no rush to accomplish any tasks, which allowed Ethan to sit
in Grandma's lap and just chill.  Any day that we can get to start
this way always has a good chance of being "good" for Ethan.

A little TV,  some reading,  and watching the effects of the wind
outside  was Ethan's  day.   He enjoyed watching the wind blow
the trees from his window view.  He also liked hearing the wind
as it blew past,  we had quite a few really strong gusts that got his
attention.   His reading today was random selections of older books
that were his Dad's  and  Uncle Keith's. 

His oxygen amount has been turned down,  and we are taking
oxygen breaks around eating times.  Ethan is happy about that
and all seems to be going well.   Have introduced Ethan to some
newer word cards  and he is picking up on them really quick.  Can
only imagine where he might be if  his eyesight,  speech,  and small
motor skills would not be so severely affected.

We again want to thank everyone for their prayers and support.
It all means so much to all of us, Thank You  !

Update # 112

Maybe it was the rain,  or perhaps the cooler temperatures,  or maybe
Ethan was just relaxed enough to enjoy a restful nights sleep.  No
matter the reason,  Ethan had a good night and is having a good
morning so far.

Ethan's days are very much like a  picture of the stock market.  Each
day has ups and downs, as does each week, month, etc.   Our hope is
that his downs are not large events,  so far we have been fortunate.
His one constant is his amazing smile and level of humor.  It is what
I believe gets him through each day.  I know he is what gets me through
each day.

Ethan continues to receive mail 2 or 3 days a week.  Thursday he received
about 35 items in the mail.  It was a classroom that sent some very colorful
cards and nice words to him.  He also received a package from Dave and
Wendy in Tennessee.  Now have duck tape on everything and I am blamed
for most of the sound effects.  This one is for you Wendy !

Tom and Karen delivered a really good book the other day.  Have read it
several times,  and over every day.  I believe that books and reading is
the most enjoyable item / time that Ethan has.  Even over the past few
days / week when he was having a rough time,  he would still listen
to stories.  When all else fails - we read, and he ALWAYS has a specific
book that he wants.

We continue to be thankful for your prayers and support.  Do not know
what we would do without them and our VERY GOOD friends - Than You !

Uncle Keith made Ethan
a card table fort, just like
he did a couple years ago.

26  April  2014

Update # 111

Ethan wishes everyone a happy and blessed Easter !

Ethan's  pre - K

school picture

Fall  2012

Update # 110

Today is day 399  -  Amazing  !

Ethan has endured a very stress filled week.  He has periods
of time when he is comfortable to times when nothing we
can do allows him to be comfortable.  He is having rough
times sleeping the night through.  This is new for Ethan, he
has had a night here or there, but never several in a row.  His
routine of one or two power naps during the day has now
become several during each day and range from 15 minutes
or so to about two hours, and no routine or pattern.

He has been on a liquid or super soft diet for what seems like
forever, but this week has been a mess.  During any given day
he will be okay to not being able to swallow anything at all.
This upsets Ethan which then adds to his being uncomfortable.

He has moments when he tolerates his oxygen hose to others
when he removes it and fights to prevent you from putting
it back on.  He always gives in, but his struggles and emotions
have his breathing all messed up then.  After this happens, he
is so exhausted he wants nothing to do with anyone or anything
and will fall asleep for a bit.

Dad and Grandma are getting real tired by days end ( as is Ethan )
and all just want a nights sleep. Papa tries to stay out of the way
and only step in to help when really needed.  Tried to read to
Ethan today, he was letting me but was difficult for him to be
focused / involved.   Will hope and see what tomorrow will bring.

Ethan continues  to receive mail, got about 55 cards on Thursday.
We showed some to him, but he really was not in the mood, so are
planning to try again later.

Thanks to all for your prayers and support.  We appreciate them
all very much.

Update # 109

Monday, day 395 - go Ethan !

Ethan's hospice nurse Marta arranged for Ethan to get a
comfort pad to sit on and one to lay on.  Thank you Marta,
they have made a big difference.  As Ethan has lost weight,
his body has developed points where he gets sore spots from
laying or sitting.  Thanks to these cushions / pads he is so
much more comfortable.  Had his most calm  and peaceful
nights rest in ages last night.  It also allowed Dad to get some
good rest also. 

Ethan received the most amazing hand made ship fold out card
from Tristan in the mail..  He is a friend of  Dad (Kent)
who took the time to totally WoW Ethan. Was very nice of
Tristan to do something so special !

Ethan is still using oxygen on a continuous basis but is breathing
better and we have stopped using the suction machine almost
completely.  We still have times that we deal with a thick milky
colored flem, but so much less often and less in amount as well.

Ethan now has total control over not only what Papa reads him,
but also when we will stop (I know Konna, I know  :-))  ).
Have not read Zorro since last experience, he now wants to
continue with the book Dr. Epstein brought him, "Shiloh".
I am amazed at his interest, and his reaction to points in the
story that he feels the need to react to - makes reading so
much fun.

This past week-end Alisha (Ducky from CHLA) came by to
visit again.  Ethan really likes her visits and even allowed her
to take a "selfie".  Of late, Ethan does not really like pictures
because of his oxygen tube and his mouth (usually open). 
We try to honor his request, but on occasion Papa does sneak one in.

We want to thank all for their prayers and support, it really helps - Thank You.

Ethan and his friend Alisha
taking a selfie.

April  2014

Update # 108

This morning marks day 392 in Ethan's struggle with DIPG.
This  past  week has been a real challenge for Ethan.  His health
has leveled off but he has lost ground to where he was a week
ago.  He is using oxygen continuously now and has added a couple
of naps to his day.  He still has his humor, but does show his
frustration at not being able to communicate as he would like.
He also is disappointed at his ability to only get  liquids down
and not much of those.  As we (family members) sit or lay
with Ethan we all get the feeling from him that he really wants
to just be a six year old boy.   Those are the moments I wish I
had not looked into his eyes.

Ethan continues to receive and enjoy mail.  I have stopped
counting the cards when he reached 575, a day or two ago.
He received a package from a friend of Grandma who lives
in Northern California.  She sent 3 books and we have read
two of them already.  We also spent some time yesterday
trying to understand some rapid arm movements of Ethan's.
We finally discovered he was sword fighting, a result of
reading "Zorro" in the a.m.  We have almost finished the book
and ended yesterday with a sword fight.  Papa needs to
realize that stopping at an exciting moment might not be
a smart move. (ha ha)

We are as always thankful for the many prayers and
support we receive.  Thank you all ...

Update # 107

Today is day 388 - just an amazing accomplishment by Ethan.
This past week has been the worst.  He has had difficulties in
breathing,  and swallowing.  And with his limited ability to
communicate with us it often became difficult to understand
what his needs were.

Today is better, but still not back to how things were a week ago.
The big deal now is for Papa not to trip on Ethan's oxygen line.
Do not know why Ethan finds it funny when Papa does the
two step in recovery (sometimes just for Ethan's amusement).

Ethan had a very busy Sunday.  A couple of relatives came by,
two different hospice nurses, phone call from his nurse - Marta,
and a visit from Dr. Mall.  And his big surprise came in the
afternoon when Alisha (Ducky) from CHLA came for a
"friend" visit.  He was very happy to see her and she was so nice.
She read him an entire book that she brought him in addition to
providing a huge smile on Ethan's face.  Ended up staying for quite a
while - in part to Ethan holding her hand and wanting her to stay.
She was very nice with the whole thing - super neat lady !

We continue to be thankful for all the prayers and support from
so many.  The cards are unbelievable - and are everywhere.
Thank you all.

Update # 106

Ethan has had a really tough Thursday night to
Saturday morning.  He has had real trouble breathing
and collecting lots of thick mucus in his throat.  For
the first time we had a week-end hospice visit.  Nurse
Lisa,  has Ethan on oxygen in addition to breathing
treatments and a med to help him relax his breathing.
Was not long at all after she got everything set and done
that Ethan was clearly better.  He is relaxed, has his color
back, and is breathing much easier.  Thank you Nurse
Lisa !

In addition to the ton of mail Ethan has been receiving of
late, close to 5oo pieces,  today he got a special one.  It was
mailed from Florida and had dolphins on the front.  It came
from Logan and Lindsey,   friends of Uncle Keith.  Ethan
really likes the card and is now bugging Uncle Keith.  It was
really nice of them to think of Ethan as they go through the stress
of moving from the east to the west (glad you are coming back!).
There is something about kids and animals,  as Ethan got a text
message (with photo) from Karen about a cat and a bird bath.
That generated a laugh even with his sore throat, thanks.

Ethan will have a surprise on Sunday.  We have not told him,  but
we know he will be very excited and happy when it happens.
The rest of you will have to wait until the next post for more
information.

As always, we thank everyone for the many prayers and support
offered by so many.  We hope you all know how special you are
to all of us.

Update # 105

The mail was delivered today.  Marta,  Ethan's hospice nurse checked in
on Ethan and made the big delivery.  Included in the 112 cards today
were some from China - wow !  What a surprise - guess we will be
reading for a bit (ha ha).

Got good news on the health front.  Ethan has been dropping weight
each period of time,  but this time he actually held his weight from
the previous check.  His mood has been good and he is still talking
about his visit from his friend Dr. Epstein.

Thank you to all who offer prayers and support - it does mean a lot
to us.  Till next time,  Ethan says  hello.

Update # 104

Hello from Ethan's world.  Ethan has had an eventful
past few days.  His mail count is now over 200 cards
and represent many locations in the U.S. along with
a couple of European locals !

On Saturday Ethan received a card from his friend
Alisha at CHLA.  She said she plans on being in a
triathlon race soon and will run in Ethan's name
again. WOW, last year's run was special but two
years in a row ...!  BTW, the back of the card art
work was very special and enjoyed by Ethan a lot.

Ethan had two special visits today.  Randy & Loretta
came by to visit this morning and delivered some very
cool gifts. The twin rabbit stuffed animals were a big hit.
Then this afternoon Dr. Epstein from CHLA came by
for a "friend" visit (Blog entry #99).  She brought 3
books, and sat right on the floor and read the entire first chapter
of one to Ethan.  She is a very special person and truly has touched
all our hearts with her skills, knowledge, and caring.

Also this week, we discovered that Papa is not nearly
as good as Dad or Grandma at helping Ethan eat.  When
telling Dad and Grandma about the experience, Ethan
rolled his eyes and covered his head.  A big laugh was had
by all (small laugh from Papa).  Something that seems so
simple should never be so difficult - oh well.

We continue to be thankful to all those that offer prayers
and send words of support. All that along with some good
friendships really help - THANK YOU ALL.

Ethan and friend (dog Chip)
stretched out watching a DVD

March  2014

Update # 103

Ethan is having a very special morning.  He is in a very good
mood and is really happy.  Why you may ask - because he got
mail and more impressive, an Internet message.

Marta,  Ethan's hospice nurse,  delivered about 100 cards and notes
to Ethan yesterday.  He loves getting mail and these cards are
GREAT.  He also spent a lot of time viewing his two recent
favorite cards. A wolf card from Karen while she was in
Minnesota,  and a large mosquito card from Dave & Wendy in
Tennessee.

Ethan has also taken over my iPad as it has photos for him on it.
Papa's friend Konna has sent a lot of photos taken while she is on
vacation in Laos and Vietnam.  His two favorites are a bear in a
hammock, and elephants on parade.  Konna was so nice to select
some really good pictures and text for Ethan - now if I (Papa)
could just get the iPad back ( large smile).

It is really good for us (family) to see Ethan happy and enjoying
his day.  Today is one of those days.  We cannot thank our
friends, and others, enough for making days like today happen.  We
keep saying thank you but it does not seem enough.  But please
believe, you were and are very special people in our hearts.

Update # 102

Today has been an up and down day.  Started out with
Ethan wanting a lot of time with Grandma in the recliner
chair.  After that need was taken care of, it was floor
mat time and reading.  Then he got in a nap, then some
TV time.  Papa managed to get Ethan outside for some
cloud watching and airplane spotting.  Now he is on the
floor mats with Dad watching TV.

After mentioning the comment button at the bottom of each
post, Ethan has received some comments.  He has received
several from the USA, and several others from Kazakhstan,
Germany, and Belgium.  Had a good time finding the distance
from them to us.

Ethan has received two packages this week with books to read.
Both are friends of Grandma and they picked really good books.
Ethan really enjoys books and being read to daily.  It is also
an almost nightly activity just prior to sleeping.

Thanks to all who continue to send prayers and support.  As a family
we really appreciate all that you do for Ethan - Thank You.

Update # 101

Ethan spent most of this morning  sitting / laying outside watching
Grandma and Papa clean-up out back.   While sitting out back in the
sun and upper 70 degree temps,  Ethan got a text message from
Karen in Minnesota.  She made him a snow man and wrote his name
in  the snow.  How very cool is that!  He was very happy with the
photo of it !

Ethan has also received several "comments" with his (this) blog.
Got a really nice one from Tom  all about being polite and the
gifts we give others without really planning.  Perfect match to
many of the thoughts we have as we care for Ethan and ponder
all that he has managed in just over five years.

Uncle Keith spent a lot of time relaxing with Ethan and watching
DVDs on TV.  Twenty-five year age difference and they both liked
watching  "Duck Tales".  Papa is SO tired of hearing that theme
music / song.  What do ya all say, one more time ?  ( ha ha ha)

We continue to be thankful for the prayers and support that is
offered us by so many.  We are a very lucky family to have
such wonderful friends and contacts.  Thank you all so
very much !

Uncle Keith and Ethan on the
floor pads watching "Duck Tales".

March  7,  2014

Update # 100

Ethan has reached 1 year from diagnosis !  There have been some
scary moments along the way, but he has made it !

The past several days have been eventful for Ethan.  Thanks to
Tom & Karen, Ethan has some new videos to view.  Ethan was
even able to get out a softly spoken "thank you".  He again has
received more mail than the rest of us.  He received a text message
and a post card from Karen while she is in Minnesota.  He received
a card from Dave & Wendy in Tennessee, and a card from his
special friend "Ducky" at CHLA.

Ethan has been increased from two hospice visits a week to three.
Lucky for us his nurse (Marta) is super good at what she does and
Ethan and family are always happy to have her stop by.  Ethan
continues to struggle against his DIPG, and maintain a smile and a
laugh for the rest of us.  He has lost more weight, he is now down to
42 lbs / 19 kg.  I have teased him that he is giving his weight to me,
and I do not need it.  This gets a laugh and if I am too close a swat.

At the bottom of all these blogs there is a comment area that is
only visible to us (Ethan and Papa).  Ethan got a comment from a
viewer in Germany - WOW !  If any of you want to tell Ethan
words of encouragement, please do and let us know where you
are from.  This really excites him as we read the comment and look
at the map to see where you are.

Our thanks to everyone for their prayers, support, and words and
messages of encouragement.  Thanks to all of you.

Update # 99

Sitting here watching Ethan take one of his power naps.  It
occurs to me as I reflect on some facts - how lucky we are today.

Most DIPG diagnosis occur in children between the ages of
five and seven years old (Ethan was five).  There are about
150 new cases a year in the United States and about 300 new
cases if you count all of North America and Europe.  Typical
survival time is 9 - 12 months from diagnosis with 90 % not
surviving past 18 months.  Ethan will reach 12 months from
diagnosis this Saturday (the 15th).

Lots of people talk to us about quality of life, Ethan's life.
With DIPG, your brain still works.  That, I think, is one of
the worst aspects of this illness.  Ethan's brain still works fine,
he still has it all together.  This I believe is what causes his
frustration, he wants to say and do things that he knows he was
once able to do and now cannot.  Even though his body is not able
to perform as he wishes, he still is able to communicate and
he laughs at life and what happens in it.

Much of his desire to fight and have moments of enjoyment
come from his Dad (Kent), his Grandmother (Kathy) and his
friend Dr. Epstein.  Anyone who meets and/or interacts with
Ethan gives off energy that he absorbs and uses to keep his
smile and happiness going - THANKS  to all of you.

Have tried to load this youtube clip several times but have
had no luck.  To see Ethan's friend Dr. Anat Epstein and get
an idea of her motivation and desire please watch this.  Go
to www.youtube.com and type in Dr. Anat Epstein.  The title
is think cure recipient.  Length is 1:26 and is from Aug. 2009.

Thanks again to all of you !

Update # 98

Ethan is having some good days in a row.  He tires easily and has several
power naps a day,  but I must say he has been "up" of late.  He continues
to enjoy being read to, he enjoys watching TV (generally),  and then there
are the moments when we try to meet his requests for eating.  Some days
are very difficult for him to swallow anything.  Then there are days that
actually do quite well.   Wish there was some pattern here !

Yesterday was a great day.  Papa was going to get a haircut and Ethan thought
that was a good idea for himself as well.  After all the labor of loading his
chair, dressing him, etc.  we went.  The drive was enjoyable and he looked
all around.  When asked if he liked being out and seeing things he said yes.
The haircuts went well, David and Cindy (Keyes Mane Design) are so
great with Ethan.  They go way out of their way to make him feel good,
and always stop their activities to talk to him.  Ethan really likes them !
When the cuts were done we came back home, once in the house Ethan
fell asleep and had a 30 minute nap.

We want to thank everyone who prays for Ethan and all of the support
that we receive.  Thanks to Dave & Wendy who pushed Ethan ahead in
the weekly mail count with a card,  he does enjoy getting mail.  Thanks
to you all including the many readers of this post.

Cindy,  David,  and Ethan
sporting his new haircut.

March  2014

Update # 97

Today is an overcast and cool day that finds Ethan watching TV
between naps and enjoying his blanket near the fireplace.  He had
company for a couple of hours this morning which accounts for
his early naps.  Any attempts at physical exercise or emotional
events (most visits) really take a toll on him.

During the past few days Ethan has again beat us all at receiving mail.
He has gotten 3 cards from Tennessee (thanks Dave & Wendy) that he
really enjoyed.  One card had a picture of a large bug which he likes
to move in front of us as if it were real and laugh.  We (family) play
along and a smile is had by all.

Today, Ethan managed with quite a bit of difficulty to get down
several bits of Uncle Keith's snack.  We now know that Ethan likes
Banana Cream Pie !  Not sure if he really likes the pie or he really
likes eating Uncle Keith's snacks, at any rate it was a fun event.

We continue to be thankful for the prayers and support that
continues to come our way.  A special thanks to Tom & Karen
for getting us out for some down time - thanks for being there
even on such short notice.

Update # 96

Day 348 and Ethan is back to his old self.  Joking with us and
laughing at funny moments on TV.

Marta (Hospice nurse) came by this a.m. ,  all is well
considering.  We also took his weight today.  Ethan checks in at
44.3 lbs ( 20.09 kilograms ).  That is a loss of about 4 lbs. in
the last month.

Monday Ethan got a package from his friend Alisha (Ducky) at
CHLA.  This was great and made for lots of smiles that afternoon.
That was followed up by a text message on Tuesday,  Ethan
thinks Ducky likes him (BIG smile !).

Ethan is really starting to slow down.  He prefers to just lay and
watch TV or get read to.  Moving about seems to be quite a chore
and he tires quickly.  However,  yesterday Dad did get him in his
wheel chair and outside for some "sun" time.  Once it was over, all
was good.

We continue to be thankful for the prayers and support that comes
our way.  Our thanks to all of you.

Ethan with goodies from
Alisha.  Notice the "Ducky"
on his shoulder - he wanted it
placed there for the
photo.

Feb.  24, 2014

Update # 95

Ethan is not having a very good day.  He does not want to
respond to any questions,  and he does not want any play
contact.  He just turns his head or rolls to his side.  As much
as this concerns us,  we are giving him his space and will do
the wait and see thing.  We think part of his attitude is due
to planned visitors coming by today.  This has happened before,
and when the visitors leave, the "old Ethan" slowly returns.

A relative was talking to me yesterday afternoon about this blog.
He said he was happy it was available to view, but got after me
about my writing skills,  or lack there of.  We looked back over
the entire blog and I am a bit sad.  My former students would not
be happy with me.  In my defense I will say that the writing is
done quickly and also endures some emotion.  With that said, thank
you for following along and I hope you are able to understand
what I am trying to say.

We also dug into the computer's records to discover who YOU are.
Ethan's blog has had readers from 14 countries, some I am aware of
and others surprise me.  Here is the list and the number of contacts
from each.

USA                            4864
Russia                          152
Kazakhstan                  130
Germany                      48
United Kingdom          46
S.  Korea                      33
Greece                          20
China                            15
Poland                          13
Belgium                       10
Israel                             7
Brazil                            3
Switzerland                   1
France                           1

We continue to be thankful for your continued prayers and support .
Here is a photo of Ethan prior to his  DIPG  diagnosis.

             
Remember to click
on most of the photos
for a larger view.

Update # 94

Feb. 21, 2014 marks 343 days for Ethan !  He is back to his old
self again today.  He woke up with a smile and his usual trick.
He sees you enter his room and he pretends to be asleep, then
flails his arms and laughs at you.  It's a must be there to appreciate
moment.

His renewed zest is being attributed to a beautiful rainbow over a tree
that was text messaged to us (thanks Tom & Karen).  I have zero
scientific proof mind you, but good friends and good thoughts ALWAYS
make every one's life better !

Today we had some real laughter while playing with Uncle Keith and
Papa can also claim some.  Ethan wanted to go outside today and spent
about an hour with Grandma looking around and reading.  Ethan
received a package in the mail today (four books),  which followed an
earlier package with 2 books last Sat. from the same friend of Grandma's in
Northern Calif. (thanks Marge).

Ethan's hospice nurse (Marta) came by today.  He has come to both expect
and enjoy her visits.  She really makes us all feel good when she is here.

We continue to be thankful for the prayers and support that we receive
from so many. Ethan says good night to you all.

Update # 93

Ethan is having a "just let me rest" day.  He usually wants to
watch TV,  be read to,  or go outside and look around.  But today
was just let me lay down.  When we would ask him what he
wanted to do,  or when we would offer suggestions  -  the response
was always  "no" .  He did,  late this afternoon,  agree to sit and rock
with grandma.  This also provided the picture at the bottom of this post.

Over the past month Ethan has moved between several days in a row of
stable health and abilities,  to a day or two of obvious decline,  to then stabilize
for several days again.  I am hoping that tomorrow will find him back to a
more involved and stable condition.  He is such a strong fighter.

Ethan received an e-mail from Alisha (CHLA) this evening..  This message
brought a grin to his face at his bed time  - thanks Alisha !  Not sure what
pleased him more,  the subject or the "3" at the end.  Knowing these two,  it
was probably both.

We continue to be thankful for the prayers and support offered by so many.
Life both surprises and amazes when you least expect it.

Ethan and Grandma while
sitting and rocking together. 

Feb.  2014

Update # 92

Today marks 335 days !  I honestly did not think these days would happen
for Ethan,  so glad to be wrong !

Hospice nurse came by today,  she put in a request for a new wheelchair.
Because Ethan is having a terrible time sitting and keeping his head upright,
she is getting him a wheelchair that reclines.  We all hope that this will
allow Ethan to be a bit more mobile and able to be more comfortable.

Ethan spent a good bit of time picking Valentine cards for people that
he wanted to send them to.  He actually wanted specific cards for specific
people.  Glad Grandma had patience, it was quite the task.  Now, several
days  later,  Ethan has quite a collection himself.  So many people being
so nice to Ethan - Thank You.

Ethan received a Valentine phone call today - from Dr. Epstein at CHLA.
Sending good wishes and checking in on "her friend".  This was a very
big surprise for us,  and for Ethan.  Everyone at CHLA goes the extra
mile,  they really are the best !

We continue to be blessed with prayers and support from so many.  We
all thank you so much for all that you do.

Ethan's collection of Valentine
Cards.  Not shown is a huge
collection of balloons  thanks to
Auntie Kay.

A  VERY  special card and frame
with "Zorro" on it.  Thanks  to
Tom & Karen.

Update # 91

Ethan is having a pretty good day.  We have narrowed his communication
cards down to a much more manageable number, and this also seems to
please Ethan as well.  Our experience is a learning one that offers new
insights almost daily.

We also started using a suction machine to assist Ethan with an ever
increasing amount of thick saliva building up in his mouth.  The way to
explain it is like what a dentist uses on you (you all have that picture
now huh).  As it was demonstrated for us by our hospice nurse, she cautioned
about getting to deep in his mouth or attaching to tongue or a cheek.
Guess who tried to suction off Ethan's face ?  Even Ethan got a laugh
out of that and is now the never forget what Papa did story.  Mention it
to Ethan and he laughs and does the cover the eyes thing - cute.

Ethan continues to smile and make us smile on a daily basis.  This in
spite of the fact that he has dropped more weight (weighs 48 lbs. now), and
his lack of strength causes him to need a short power nap or two during
the day.  He was very excited yesterday when he received a note
from "Ducky" in the mail.  Totally amazes me the reaction he has when
talking about her or when they see each other - neat Lady !

We continue to thank everyone for the continued prayers and support.
Following is a recent picture of Ethan with his new "Superman"
pillow pal - Thanks Dave and Wendy.

Feb.  2014

Ethan and pillow pal.