Update # 41

Wednesday's trip to CHLA for lab work went well.  Had a few extra minutes
and used them to visit some of the staff from Ethan's  stay there.   The staff  at
CHLA are all very nice and always make Ethan feel really good.

Next week will be a busy one.  Ethan needs to be at CHLA on Tuesday for a new
MRI.  Then on Wednesday he has lab work and a visit with his team of doctors.
Am hopeful that RMH will have a room for us,  otherwise will be making two

round trips to LA.

Ethan eating a carrot from our garden.

24 July 2013

Update # 40

Grandma, Grandpa, Dad, and Ethan went to an Angel  ball game this evening.
Got a free "Angel Surfer Monkey" for coming to the game.  Went early - looked
around - tried for an autograph ( no luck ) and went way to the top level for our
seats.  Could see the game well (above third base) and also was excited when 5
army helicopters went over real low - WOW !  We left the game early,  Ethan
needs his sleep and tomorrow is Wednesday which means CHLA.  We will leave
for LA about 7:30 for our 10:00 am lab work.  Thanks again to all of you for your
prayers and support - it means a lot to ALL of us, take care ...

Dad and Ethan at an Angel baseball
game

July 23, 2013


note the Angel's Surfer Monkey
game giveaway

Update # 39

Wednesday was another trip to CHLA.  No rooms available so we did the "a.m." drive.  Left Riverside at 7:30 and got to CHLA at 10:00.  We were a bit late, but all went well.  Lab work took about 15 minutes and the results were again  good.  They want Ethan to get another MRI and have scheduled it for July 30.

Wednesday evening was the backyard family baseball game.  Talk about fun and lots of laughs !  Ethan's energy lasted longer than we thought but still got tired early.  Got a bath and he was out,  slept all night.   This time last year he had good eye/hand coordination and could hit the ball (mostly off a "T"), and run well.  Last night was different, missed the ball a lot (soft toss) and when he ran it was not the care free abandon usually enjoyed by a 5 year old. But he continues to improve daily and is probably not as "off" as Grandpa thinks.  But the MOST important thing was it was an activity he picked and he had fun !

Life is good and we thank everyone for their prayers and support.   Take care all and be safe ...

Update # 38

Wednesday has again come and gone.   Ronald McDonald House was full and we had to use plan "B".  Took 2 hours to drive in to CHLA , nothing special to speak of other than LOTS of traffic.

The lab work went well and again everyone seems pleased with the results.  It was noted that I have lost some weight (steroid med weight we hope).  But my overall evaluation is GOOD.

Earlier in the week Ethan, Dad, Grandma, and Papa went to Sea World in San Diego again.  Ethan is amazed by  the animals as they move about in their environment.  He got a big laugh this trip as he watched a very large walrus try to move about out of the water.  He thinks a diet is in order, or stay in the water.

It has been quite hot and humid here and outside activities take the energy out of Ethan quickly.  On one occasion this week he played outside and followed it up with a 2.5 hour nap.  It is these times that remind me that Ethan is not 100 % even though he looks good.  But I am truly grateful for the 118 days and we all plan on many more !

We continue to be blessed with prayers and support from so many.  Thank you all more than my words can express - you are all wonderful.

Ethan and Uncle Keith watching
TV.  Who will stay alert longer ?

Update # 37

As is the case each week, Wednesday was our scheduled visit at CHLA.  We usually try to stay the night before at Ronald McDonald House, but there were no rooms available  this week.  So we left Riverside at about 7:30 am to make our 10:30 am appointment. We arrived about 9:40 - really dislike LA traffic and near a holiday to boot.  UGH ...

Ethan's lab work went well  and all were happy with the results.   He also had an exam with his lead Dr. this week.  Ethan really likes her and both seem to get along well.  She noted that he is continuing to shed the extra weight  he gained during the radiation and meds portion of treatment ( good thing ).  She noted he has a weakness on his left side as compared to the right side, but not a big concern at this time ( okay thing ).  Over all he is happy, active, and healthy under the situation ( good thing ).

Ethan has finished his 3 weeks of no meds, so CHLA set us up with his new meds for the week.  For the next 5 days Ethan will take 3 meds at specific times each am and 1 med each pm.  These are in addition to his week-end meds which are also required each am & pm at specific times.  Although some are, in Ethan's words, NASTY  -  he does his part with little or no fuss.  His overall outlook and behavior never fail to amaze me. 

To celebrate the "4th of July", Ethan will be going to a ball game.  He enjoys the atmosphere, the hot dogs, watching the players, and today : Fireworks  !

We all want to thank you for your prayers and support.  It is because of you that his Dr. was able to say this week - "He's doing so good !"  I wish I could explain it ... just amazing.

Ethan and Grandma.  Every once in a while he still wants to wear a tie (like important people do).