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