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.