Update # 50

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

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

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

Ethan and Dad in cartoon view.

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

8 - 29-2013

Update # 49

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

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

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

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

Ethan with dino display at LA County Museum

8-28-2013

Update # 48

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

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

Update # 47

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

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

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

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

 8-19-2013

Update # 46

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

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

Ethan in the boat ready to enter Small World.

Ethan on the Merry-Go-Round at Disneyland.

Update # 45

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

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

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

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

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

Update # 44

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

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

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

Big sign across wall of Macaroni Grill

Captain America arrives to meet Ethan

Captain America and his new assistant

exchanging autographs

Just having a real good time !

Update # 43

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

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

Update # 42

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

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

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

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

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

Ethan and Dad (Kent) at Griffith Park
amusement area

7-31-2013

Ready for the train ride at Griffith Park

Ethan and Dad (Kent) 

7-31-2013