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.