I am sad to say that my special buddy / grandson Ethan
passed away this afternoon.
Ethan Marcus Collins
3 Nov. 2007 - 29 Aug. 2014
I cannot think of anything to say, will try another day.
Thank all of you for your support and prayers.
Friday, August 29, 2014
Update # 137
Ethan's Day 532
Wednesday evening and night were difficult for Ethan. He
was having a hard time breathing and saliva was building
up in his throat. Thursday morning was a real rough time
for Ethan. Thank goodness we have a great nurse (Marta)
and our involvement with So. California Hospice Foundation.
We have had a doctor, round the clock nurse time and lots
of calm support from all of them. A Great Team !
Thursday evening saw Ethan a bit calmer and resting. His
breathing is so shallow, it is almost scary. I fear his battle
with DIPG may be coming to an end (very sad face). His
lead doctor (and friend) Dr. Epstein has come by to see Ethan.
A long drive in holiday traffic and still she came.
Will keep you all informed as news becomes available. As of
now he is resting and seems comfortable.
As always we thank you all for your support and prayers. And
a special thank you to all the medical people that have helped
these past two days and So. California Hospice Foundation.
Wednesday evening and night were difficult for Ethan. He
was having a hard time breathing and saliva was building
up in his throat. Thursday morning was a real rough time
for Ethan. Thank goodness we have a great nurse (Marta)
and our involvement with So. California Hospice Foundation.
We have had a doctor, round the clock nurse time and lots
of calm support from all of them. A Great Team !
Thursday evening saw Ethan a bit calmer and resting. His
breathing is so shallow, it is almost scary. I fear his battle
with DIPG may be coming to an end (very sad face). His
lead doctor (and friend) Dr. Epstein has come by to see Ethan.
A long drive in holiday traffic and still she came.
Will keep you all informed as news becomes available. As of
now he is resting and seems comfortable.
As always we thank you all for your support and prayers. And
a special thank you to all the medical people that have helped
these past two days and So. California Hospice Foundation.
Tuesday, August 26, 2014
Update # 136
Ethan and Papa have an on-going conversation happening. We have been
talking about Blog post # 135. He likes the map and we have great
moments as we discuss where Ethan is in relation to visitors to this
Blog. The conversation is very difficult as Ethan has very little to
no speech available. It turns into short statements followed by positive
or negative gestures from Ethan. Hard but not impossible to keep
his thoughts going. Time becomes the biggest barrier as he becomes
frustrated when we do not understand what he is trying to say.
Ethan's current desire with this blog is to tell some of our most
recent visitors from outside the USA hello. Below is his request
in Ukrainian, Russian, Spanish, Polish, and German. We will keep
you informed if he gets any replies - hope so.
Ethan wants to thank you for taking the time to view
his blog. When you view and comment ( please ) it
really makes him happy. Thank you and have a good day.
We hope the translations are accurate and we look forward to hearing
from you. Thanks for keeping Ethan and his family in your thoughts
and prayers.
Saturday, August 23, 2014
Update # 135
Ethan has now reached day # 526 !
This past week has seen Ethan dealing with several issues.
He is experiencing a lack of controlled movement from the
right side of his body. Both his arm and leg have very little
movement on their own. His food intake (mostly liquid)
has dropped over the past few days. He wasn't taking that
much to begin with so this is a big concern for us. But he
continues to have a great attitude and makes us all smile when
with him.
Some time back, Papa's friend Rita sent Ethan a package
with some USMC stuff in it. There was a hologram card in it
that continues to be a favorite along with a cloth with the
USMC emblem on it. We want to thank Rita again along
with her great helpers from back east - you have provided
many great moments.
This past week Ethan received two cards from Alisha (Ducky).
They met at CHLA and she continues to be a smile maker
for Ethan. She even remembered him while on vacation in
Colorado - Wow !
Ethan is truly a world traveler. This blog has had 9665 views.
Some countries viewing are Kazakhstan = 248, Russia = 164,
Germany = 86 , United Kingdom = 57, Turkey = 30,
Poland = 21, Greece / Israel = 20, China = 19, Korea = 11,
S. Africa = 7. Totally amazes us all, but thank you all for
taking the time to check on Ethan and for several
very nice comments that you have left us.
We want to thank everyone for their support and prayers,
Ethan and family are very grateful.
The map Ethan and Papa
keep to show blog views.
Thank all of you !
This past week has seen Ethan dealing with several issues.
He is experiencing a lack of controlled movement from the
right side of his body. Both his arm and leg have very little
movement on their own. His food intake (mostly liquid)
has dropped over the past few days. He wasn't taking that
much to begin with so this is a big concern for us. But he
continues to have a great attitude and makes us all smile when
with him.
Some time back, Papa's friend Rita sent Ethan a package
with some USMC stuff in it. There was a hologram card in it
that continues to be a favorite along with a cloth with the
USMC emblem on it. We want to thank Rita again along
with her great helpers from back east - you have provided
many great moments.
This past week Ethan received two cards from Alisha (Ducky).
They met at CHLA and she continues to be a smile maker
for Ethan. She even remembered him while on vacation in
Colorado - Wow !
Ethan is truly a world traveler. This blog has had 9665 views.
Some countries viewing are Kazakhstan = 248, Russia = 164,
Germany = 86 , United Kingdom = 57, Turkey = 30,
Poland = 21, Greece / Israel = 20, China = 19, Korea = 11,
S. Africa = 7. Totally amazes us all, but thank you all for
taking the time to check on Ethan and for several
very nice comments that you have left us.
We want to thank everyone for their support and prayers,
Ethan and family are very grateful.
The map Ethan and Papa
keep to show blog views.
Thank all of you !
Monday, August 18, 2014
Update # 134
We have finished our weight check for Ethan. His current
weight is 37.7 lbs. ( 17.1 kg. ) . That is a 0.7 lbs. ( 0.3 kg. )
drop from his last weight on 3 August. We also checked his
height, he is now 48.5 inches ( 123.19 cm ) tall.
This past week-end has seen Ethan eating a little less than
has been his normal amount. But over all he seems happy
and as usual - no complaints !
Ethan recently received a package from Russ Turner, he use
to teach school with Grandma. He always sends me
something unique! Included in this package was a picture
of his son-in-law Tony. He is a pro basketball player in Korea.
The picture is autographed and everything ! Ethan enjoys watching
sports on TV and basketball is one of the games he enjoys.
GO TONY !
Ethan has not got to be outside much this week. The heat is too
much for him. He did get out one evening to deliver some
tomatoes and hot chilies to our neighbors Betty and Lupe.
This is an enjoyable event for Ethan and they have always been
very nice with him.
We received a phone call today from Ethan's lead doctor at
CHLA. Dr. Epstein called to check in and talk about Ethan. She
had been gone for a while and when she returned she called. Ethan
still calls her his friend - so very cool.
We want to thank everyone for all of the prayers and support
that we receive. We are very fortunate to have such good
friends and family - thank you.
Ethan and most of his
collection of stuffed
animals.
18 Aug. 2014
weight is 37.7 lbs. ( 17.1 kg. ) . That is a 0.7 lbs. ( 0.3 kg. )
drop from his last weight on 3 August. We also checked his
height, he is now 48.5 inches ( 123.19 cm ) tall.
This past week-end has seen Ethan eating a little less than
has been his normal amount. But over all he seems happy
and as usual - no complaints !
Ethan recently received a package from Russ Turner, he use
to teach school with Grandma. He always sends me
something unique! Included in this package was a picture
of his son-in-law Tony. He is a pro basketball player in Korea.
The picture is autographed and everything ! Ethan enjoys watching
sports on TV and basketball is one of the games he enjoys.
GO TONY !
Ethan has not got to be outside much this week. The heat is too
much for him. He did get out one evening to deliver some
tomatoes and hot chilies to our neighbors Betty and Lupe.
This is an enjoyable event for Ethan and they have always been
very nice with him.
We received a phone call today from Ethan's lead doctor at
CHLA. Dr. Epstein called to check in and talk about Ethan. She
had been gone for a while and when she returned she called. Ethan
still calls her his friend - so very cool.
We want to thank everyone for all of the prayers and support
that we receive. We are very fortunate to have such good
friends and family - thank you.
Ethan and most of his
collection of stuffed
animals.
18 Aug. 2014
Wednesday, August 13, 2014
Update # 133
Day 516 and Ethan continues to roll on !
Ethan's family, his doctors, and supporters are all pretty happy.
By most results and histories, less than 10 % of DIPG
patients survive past 18 months. As of today, Ethan is
12 days past the 18 month marker - Yea !!!!
Ethan continues to get mail which pleases him a lot. His
most recent mail was a package from Grandma's friend
Marge, a package that had books in it. This is great
as Ethan loves to have books read to him.
To every one's surprise, Papa did some shopping when he
got out the other day. He got Ethan some "Superman" sheets
for his bed. This turned out to be a good thing as Ethan liked
getting a gift, and he also likes all kinds of super heroes.
This past week-end Ethan hung out with his Dad and did some
guy time watching TV and reading books. While they were
busy Grandma and Papa went out to dinner with good friends
Tom & Karen. The food was good and the company was
great. Thanks to Tom & Karen for clearing the schedule and
getting us out for a bit, it was over too quick but good none
the less.
As always, we close our notes with a thank you to everyone
who continues to support and pray for Ethan and his family.
It means a lot to all of us.
Ethan's family, his doctors, and supporters are all pretty happy.
By most results and histories, less than 10 % of DIPG
patients survive past 18 months. As of today, Ethan is
12 days past the 18 month marker - Yea !!!!
Ethan continues to get mail which pleases him a lot. His
most recent mail was a package from Grandma's friend
Marge, a package that had books in it. This is great
as Ethan loves to have books read to him.
To every one's surprise, Papa did some shopping when he
got out the other day. He got Ethan some "Superman" sheets
for his bed. This turned out to be a good thing as Ethan liked
getting a gift, and he also likes all kinds of super heroes.
This past week-end Ethan hung out with his Dad and did some
guy time watching TV and reading books. While they were
busy Grandma and Papa went out to dinner with good friends
Tom & Karen. The food was good and the company was
great. Thanks to Tom & Karen for clearing the schedule and
getting us out for a bit, it was over too quick but good none
the less.
As always, we close our notes with a thank you to everyone
who continues to support and pray for Ethan and his family.
It means a lot to all of us.
Saturday, August 9, 2014
Update # 132
Today is Ethan's "Day 512".
Ethan has had an up and down week. Overall Ethan continues
to have good days. He enjoys life to the extent that he can and
always finds something / someone to smile with. But over the
past few days he has experienced what I refer to as body tremors.
They seem to be mostly on his right side, his leg mostly but also
sometimes in his arm as well. This morning he has had them in
both arm and leg at the same time. A bit unsettling for Ethan
and us as well. He does not have any real pain with them, but
I assume they are much like a muscle cramp that we all have
had at one time or another. Must be scary for him though ...
Ethan is lucky to have received some very special cards from
Logan and Tristan in the past. Because they are both serving
in the US military overseas, Ethan and I have just sent them
a "care package". Ethan had a ball telling me what to put in
the box and how many. His wants and the box size did not
always match, but the packing is complete. He enjoyed the
mailing of this package as much as he enjoys getting mail.
It was really fun for me watching him go through this whole
activity - enjoy it guys !
Also, this past week has seen several cards from Karen and Tom.
They are very nice and always seem to know just the right
card to excite Ethan. Thank you both very much !
Last night Ethan and his Dad (Kent) were watching the
Angels vs Red Soxs on TV. There were a couple of minutes
at different points in the game when they were both making so
much noise, you would of thought they were really at the game.
Ethan enjoys seeing outfielders jump for a ball or when infielders
slide to catch a ball. Great baseball fan (smile).
We continue to be thankful for the support and prayers from
so many, thank you all so much. Ethan sends a high five to
all of you.
Ethan has had an up and down week. Overall Ethan continues
to have good days. He enjoys life to the extent that he can and
always finds something / someone to smile with. But over the
past few days he has experienced what I refer to as body tremors.
They seem to be mostly on his right side, his leg mostly but also
sometimes in his arm as well. This morning he has had them in
both arm and leg at the same time. A bit unsettling for Ethan
and us as well. He does not have any real pain with them, but
I assume they are much like a muscle cramp that we all have
had at one time or another. Must be scary for him though ...
Ethan is lucky to have received some very special cards from
Logan and Tristan in the past. Because they are both serving
in the US military overseas, Ethan and I have just sent them
a "care package". Ethan had a ball telling me what to put in
the box and how many. His wants and the box size did not
always match, but the packing is complete. He enjoyed the
mailing of this package as much as he enjoys getting mail.
It was really fun for me watching him go through this whole
activity - enjoy it guys !
Also, this past week has seen several cards from Karen and Tom.
They are very nice and always seem to know just the right
card to excite Ethan. Thank you both very much !
Last night Ethan and his Dad (Kent) were watching the
Angels vs Red Soxs on TV. There were a couple of minutes
at different points in the game when they were both making so
much noise, you would of thought they were really at the game.
Ethan enjoys seeing outfielders jump for a ball or when infielders
slide to catch a ball. Great baseball fan (smile).
We continue to be thankful for the support and prayers from
so many, thank you all so much. Ethan sends a high five to
all of you.
Sunday, August 3, 2014
Update # 131
Day 506 and all is well in Ethan's space.
It has been a long but good week for Ethan. There has been
laughs and moments of real quiet, but Ethan continues with
his desire to live life.
Earlier today we did a weight check on Ethan. His weight
continues to stay about the same. Today his weight is 38.4
pounds ( 17.4 kg ). This is 0.4 lbs ( 0.1 kg ) less than his
last weight about mid July. He has grown taller, but we have
not checked for an exact amount lately.
Ethan and Grandma have been getting a lot of tomatoes from
their garden. Enough that Ethan has delivered some to the
neighbors. This is both fun and sad for Ethan. He really
likes taking them to our neighbors, but is a bit sad being stuck
in his wheelchair in front of them. He is VERY aware of his
appearance in front of others. He really does not like people
(strangers) staring at him. Does not like being perceived as
different, less than normal.
Yesterday Ethan and Papa watched a video about Robin Hood
while Grandma and Dad (Kent) was gone shopping. It was
the Disney animal version. When the DVD was over,
Ethan and Papa shot foam arrows at each other and had a
toy sword fight. As is usually the case, Papa lost with much
fan fare and Grandma and Dad busted us for playing so loud
and wild. Papa is fun to play with, but almost always gets
caught when breaking the rules ( smile ).
We wish to thank all of you for your support and prayers,
it means a lot to all of us.
It has been a long but good week for Ethan. There has been
laughs and moments of real quiet, but Ethan continues with
his desire to live life.
Earlier today we did a weight check on Ethan. His weight
continues to stay about the same. Today his weight is 38.4
pounds ( 17.4 kg ). This is 0.4 lbs ( 0.1 kg ) less than his
last weight about mid July. He has grown taller, but we have
not checked for an exact amount lately.
Ethan and Grandma have been getting a lot of tomatoes from
their garden. Enough that Ethan has delivered some to the
neighbors. This is both fun and sad for Ethan. He really
likes taking them to our neighbors, but is a bit sad being stuck
in his wheelchair in front of them. He is VERY aware of his
appearance in front of others. He really does not like people
(strangers) staring at him. Does not like being perceived as
different, less than normal.
Yesterday Ethan and Papa watched a video about Robin Hood
while Grandma and Dad (Kent) was gone shopping. It was
the Disney animal version. When the DVD was over,
Ethan and Papa shot foam arrows at each other and had a
toy sword fight. As is usually the case, Papa lost with much
fan fare and Grandma and Dad busted us for playing so loud
and wild. Papa is fun to play with, but almost always gets
caught when breaking the rules ( smile ).
We wish to thank all of you for your support and prayers,
it means a lot to all of us.
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