Ethan is getting ready for a visit to CHLA. We have a noon appointment
and hope that traffic will not be to bad in either direction. More to
follow ...
Well the trip in was uneventful (yea), but the rest of the day was not !
Ethan had difficulties getting his port flushed, thus tears and crying.
Took him a long time to calm down, and he was not happy with me !
Had a good visit with his Dr. ( they like each other ). Ethan is now
officially off all meds. No clinical trials and he does not need to
return to CHLA for labs. His Dr. wants to keep contact, and hopes
Ethan will come visit, but no more required or needed visits. This
is both good and bad news. Good because Ethan does not need the
stress in his life, these trips took so much out of him. Bad because
it marks the last phase in his battle with DIPG. No one knows
how long it will be, but have been told it usually does not last very
long.
Before we left, we made a few rounds visiting people who have
become friends and have really made time with Ethan quality. As
we were leaving we went to the garden, an area Ethan enjoyed while
inpatient there. It was all decorated for Christmas and provided us a few
photos that we will upload soon.
Grandpa like Ethan is tired, so will close this post. We as always thank
you for your prayers and support. This is not something we can / could
do without this help. More posts and photos to follow.
By the way , Ethan spent lots of time telling almost everyone at CHLA
about his recent "Big Truck" experience. It seems it was more important
to him than I thought it would be - thanks again to Dave & Wendy .
Tuesday, November 26, 2013
Saturday, November 23, 2013
Update # 75
Ethan was excited this morning, he knew he was going to meet
the couple who have provided him with mail and packages to
open over the past six months. He calls them his "Tennessee
friends".
The morning was a bit awkward with breakfast, getting dressed,
and a new med schedule. We did not get around as fast as we had
wanted, but we did get it done .
Getting to the truck stop about 11:00 am, he finally got to meet
these wonderful friends. They had him feeling great in seconds
and took him out to the truck. After looking the truck over,
Dave arranged for him to get a ride - something that was great
for him. He sat with Wendy (a first - not a family member - he
said he liked her !) and watched out the window as they drove
around. As Dave backed into a parking spot, Ethan got involved
and started giving Dave directions - real cute.
Got a few photos, said our byes, and headed home. Ethan was a bit
ticked, he wanted Dave to take all of us to Ga. to eat. When asked why
he said that is where they are going and Wendy asked me to go. I
tried to explain the distance, space, and time involved. He came
around to my way of thinking with one condition. If Dave and Wendy
come back he can go with them and he will nice like their cat.
Want to REALLY THANK Dave and Wendy for opening up
their day and truck to Ethan and family. They lost sleep, time,
who knows what else - and all for Ethan. There really are
some wonderful people in this world and we know two of them.
Dave, Wendy, and Ethan at
the "Big Truck".
23 Nov. 2013.
The view out the front
window. Ethan and Wendy.
23 Nov. 2013
Ethan and Wendy in the
"Big Truck". So where
to next ?
23 Nov. 2013
Wendy, Ethan, and his new
bear.
23 Nov. 2013
Ethan sitting in the sleeper of
the "Big Truck".
23 Nov. 2013
Ethan opposite Dave in the
"Big Truck".
23 Nov. 2013
Ethan and his new bear outside
The "Big Truck".
23 Nov. 2013
the couple who have provided him with mail and packages to
open over the past six months. He calls them his "Tennessee
friends".
The morning was a bit awkward with breakfast, getting dressed,
and a new med schedule. We did not get around as fast as we had
wanted, but we did get it done .
Getting to the truck stop about 11:00 am, he finally got to meet
these wonderful friends. They had him feeling great in seconds
and took him out to the truck. After looking the truck over,
Dave arranged for him to get a ride - something that was great
for him. He sat with Wendy (a first - not a family member - he
said he liked her !) and watched out the window as they drove
around. As Dave backed into a parking spot, Ethan got involved
and started giving Dave directions - real cute.
Got a few photos, said our byes, and headed home. Ethan was a bit
ticked, he wanted Dave to take all of us to Ga. to eat. When asked why
he said that is where they are going and Wendy asked me to go. I
tried to explain the distance, space, and time involved. He came
around to my way of thinking with one condition. If Dave and Wendy
come back he can go with them and he will nice like their cat.
Want to REALLY THANK Dave and Wendy for opening up
their day and truck to Ethan and family. They lost sleep, time,
who knows what else - and all for Ethan. There really are
some wonderful people in this world and we know two of them.
Dave, Wendy, and Ethan at
the "Big Truck".
23 Nov. 2013.
The view out the front
window. Ethan and Wendy.
23 Nov. 2013
Ethan and Wendy in the
"Big Truck". So where
to next ?
23 Nov. 2013
Wendy, Ethan, and his new
bear.
23 Nov. 2013
Ethan sitting in the sleeper of
the "Big Truck".
23 Nov. 2013
Ethan opposite Dave in the
"Big Truck".
23 Nov. 2013
Ethan and his new bear outside
The "Big Truck".
23 Nov. 2013
Thursday, November 21, 2013
Update # 74
Today is Thursday and Ethan woke up to rain today. We went to the sliding glass
door and watched the rain fall several times today. I would love to know what he
was thinking as he watched - wanted to ask but he instructed me to be quiet and
listen (smile).
Hospice nurse came by and visited with Ethan for about 30 - 45 minutes this morning.
She gets along well with Ethan and is always nice to have a professional opinion
now and then.
Had two outings today in spite of the weather. We timed it well, and went to lunch
at the "Old Spaghetti Factory". Had a nice lunch with Grandma, Papa, and Dad. As
usual, Ethan's manners and behavior are wonderful and he received kudos from
several of the staff. Am amazed each time someone goes out of their way to say
something to him. To bad it does not happen to all children all the time, might make a
big difference. As we returned home, we stopped by Keyes Mane Design so Papa and
Ethan could get their hair cut. The owners (a family) are wonderful people and have for
many years been the only place many go. Cindy and David have made Ethan feel
GREAT ! They talk and joke with him and discuss things - how neat is that ! As we
were leaving my great cell service sent me a text. It was Cindy from Keyes asking
how Ethan was doing and sending prayers his way. Cannot say enough about how
nice they are, and they do a super job with your hair.
The events of the day have really made Ethan tired. The evening finds us watching
an old VHS - "The Rescuers". It was his request along with a fire in the fireplace.
A good family ending to the day.
Thanks to all of you for your prayers and support. There are several that I try
to thank for the extra they do, but in reality everyone has been great to Ethan.
Ethan from earlier summer
or fall 2013.
door and watched the rain fall several times today. I would love to know what he
was thinking as he watched - wanted to ask but he instructed me to be quiet and
listen (smile).
Hospice nurse came by and visited with Ethan for about 30 - 45 minutes this morning.
She gets along well with Ethan and is always nice to have a professional opinion
now and then.
Had two outings today in spite of the weather. We timed it well, and went to lunch
at the "Old Spaghetti Factory". Had a nice lunch with Grandma, Papa, and Dad. As
usual, Ethan's manners and behavior are wonderful and he received kudos from
several of the staff. Am amazed each time someone goes out of their way to say
something to him. To bad it does not happen to all children all the time, might make a
big difference. As we returned home, we stopped by Keyes Mane Design so Papa and
Ethan could get their hair cut. The owners (a family) are wonderful people and have for
many years been the only place many go. Cindy and David have made Ethan feel
GREAT ! They talk and joke with him and discuss things - how neat is that ! As we
were leaving my great cell service sent me a text. It was Cindy from Keyes asking
how Ethan was doing and sending prayers his way. Cannot say enough about how
nice they are, and they do a super job with your hair.
The events of the day have really made Ethan tired. The evening finds us watching
an old VHS - "The Rescuers". It was his request along with a fire in the fireplace.
A good family ending to the day.
Thanks to all of you for your prayers and support. There are several that I try
to thank for the extra they do, but in reality everyone has been great to Ethan.
Ethan from earlier summer
or fall 2013.
Saturday, November 16, 2013
Update # 73
Just a short note on Ethan's condition. His vision is still
a major concern for him. He asks if it will get better and
the answer is hard. His large motor skills bounce from
weak to uncontrolled. He often has small muscle tremors
and unexplained muscle jerking. He requires assistance
to stand and walk and uses his chair (type of wheelchair)
for all travels of any distance. He still has issues with
swallowing and all liquids must be thickened. His
speech is at times very hard to understand and he tells
us his mouth won't say the words right. Small motor
skills are the hardest for him, and he sometimes needs help
eating. Holding pencils or crayons is very difficult and
the look he gives you is hard to explain. The facial
palsy on the left side is still here but not any worse.
He still loves stories, TV, music, games, and hugging
Grandma.
We all continue to thank you for your prayers and
support. Special thanks to Tom & Karen for being
there and Dave & Wendy who have provided
Ethan with so much joy.
Ethan in the driver's seat at the
Autopia Ride in Disneyland.
October 2013
a major concern for him. He asks if it will get better and
the answer is hard. His large motor skills bounce from
weak to uncontrolled. He often has small muscle tremors
and unexplained muscle jerking. He requires assistance
to stand and walk and uses his chair (type of wheelchair)
for all travels of any distance. He still has issues with
swallowing and all liquids must be thickened. His
speech is at times very hard to understand and he tells
us his mouth won't say the words right. Small motor
skills are the hardest for him, and he sometimes needs help
eating. Holding pencils or crayons is very difficult and
the look he gives you is hard to explain. The facial
palsy on the left side is still here but not any worse.
He still loves stories, TV, music, games, and hugging
Grandma.
We all continue to thank you for your prayers and
support. Special thanks to Tom & Karen for being
there and Dave & Wendy who have provided
Ethan with so much joy.
Ethan in the driver's seat at the
Autopia Ride in Disneyland.
October 2013
Tuesday, November 12, 2013
Update # 72
It's Wednesday evening, Ethan and Dad are watching
TV and all seems well. Hospice stopped by today and
all seems to be okay. Ethan has a bit of a cold but lungs
seem clear and breathing appears to be normal.
I found an item on one of the social networks and
thought it was something to think about, so will post it
with this post.
Ethan has been playing a lot and continues to enjoy
his (books) stories. He received a new one recently
and is quite excited about it. Thanks Tom and Karen,
again you are right on target.
Thanks to all for your prayers and support. As each day
passes we continue to be amazed ! Thank You !
Always good to keep focused.
TV and all seems well. Hospice stopped by today and
all seems to be okay. Ethan has a bit of a cold but lungs
seem clear and breathing appears to be normal.
I found an item on one of the social networks and
thought it was something to think about, so will post it
with this post.
Ethan has been playing a lot and continues to enjoy
his (books) stories. He received a new one recently
and is quite excited about it. Thanks Tom and Karen,
again you are right on target.
Thanks to all for your prayers and support. As each day
passes we continue to be amazed ! Thank You !
Always good to keep focused.
Saturday, November 9, 2013
Update # 71
Was spending some time looking at photos with
Ethan from his recent birthday. We like this one,
yes I'm hooked. What a terrific grandson !
November 2013
Ethan and Papa with his specific
requested birthday cake.
Ethan from his recent birthday. We like this one,
yes I'm hooked. What a terrific grandson !
November 2013
Ethan and Papa with his specific
requested birthday cake.
Thursday, November 7, 2013
Update # 70
Having a pretty laid back morning today. Yesterday was a long
day with a trip to CHLA and some time at Griffith Observatory
in the early evening.
The visit at CHLA was longer than planned. His port would
not access as we had wanted, so some extra work and time to
get everything working for blood draws. Time waiting is the
hardest for Ethan. His mental set is always "in and out", and
works well when everything is good. But if anything goes
wrong or is off schedule - he gets a pretty nasty attitude.
Most of the attitude, like the weight, is a side effect of one of
his drugs which ends tomorrow (yea ! ). Gradually his own
behavior and attitude will return ( smile ).
When we were ready to leave LA it was 4:30 and a traffic
nightmare. So Ethan picked In and Out for eating and then
we went up to Griffith Observatory for the evening views.
Dinner was fine and the views were super. Ethan was totally
impressed with all the lights of LA as seen from the hilltop.
He was "look at that, and look over there ...", was fun to
watch him enjoy it.
About 7:45 we loaded up and headed home. Traffic was
not to bad and the trip only took about an hour and a half.
Ethan sleep most of the return trip and was ready to play
when we got home.
Ethan is about the same as last week and is gradually getting
use to being in the "chair" for longer distances. He does not
like how things are going, but who would !
Thanks to all for your prayers and support, and special thanks to
Dave and Wendy for a very special birthday. And I also want to
thank all the folks at CHLA that just drop everything and chat with
Ethan when he pops in unannounced.
Ethan opening gifts on his
6th birthday.
3 Nov. 2013
Ethan looking at the lights of L.A.
from Griffith Observatory.
6 Nov. 2013
day with a trip to CHLA and some time at Griffith Observatory
in the early evening.
The visit at CHLA was longer than planned. His port would
not access as we had wanted, so some extra work and time to
get everything working for blood draws. Time waiting is the
hardest for Ethan. His mental set is always "in and out", and
works well when everything is good. But if anything goes
wrong or is off schedule - he gets a pretty nasty attitude.
Most of the attitude, like the weight, is a side effect of one of
his drugs which ends tomorrow (yea ! ). Gradually his own
behavior and attitude will return ( smile ).
When we were ready to leave LA it was 4:30 and a traffic
nightmare. So Ethan picked In and Out for eating and then
we went up to Griffith Observatory for the evening views.
Dinner was fine and the views were super. Ethan was totally
impressed with all the lights of LA as seen from the hilltop.
He was "look at that, and look over there ...", was fun to
watch him enjoy it.
About 7:45 we loaded up and headed home. Traffic was
not to bad and the trip only took about an hour and a half.
Ethan sleep most of the return trip and was ready to play
when we got home.
Ethan is about the same as last week and is gradually getting
use to being in the "chair" for longer distances. He does not
like how things are going, but who would !
Thanks to all for your prayers and support, and special thanks to
Dave and Wendy for a very special birthday. And I also want to
thank all the folks at CHLA that just drop everything and chat with
Ethan when he pops in unannounced.
Ethan opening gifts on his
6th birthday.
3 Nov. 2013
Ethan looking at the lights of L.A.
from Griffith Observatory.
6 Nov. 2013
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