Well all you Voice Quilt slackers--it looks like you have a little extra time!!! This service has been bought (yes! bought! and paid for by our friend--) It runs for exactly 30 days--at which point it shuts down FOREVER!!! (forever, as "until the end of time"). BUT!!! Because the first caller didn't call until May 5--you all have a few extra days! Here is the reminder....
"I'm writing with a quick reminder. Your unlimited toll-free phone time expires on June 5 at 1:05 PM EDT."
That's right!! You all have a few extra days to call---PLEASE make the effort to call! You have until Weds. at 1:05 PM!!
Thanks to all that have called thus far! Those of you who have NOT called? Get on it! Love, Kyle & Dorien
Please Please Please take the time!! This is something that will be treasured forever!
If you want to call back and tell ANOTHER funny/good/memory of Kyle, you have that chance too!
***Side note: Chemo will be moving to FRIDAYS starting next week (June 7)****
***I will be back to blogging soon, I've been a lazy slacker and we've been getting A LOT
done around the house on this off week.
Kyle is feeling really good and working hard. We're very grateful for that!
As always, Thanks for love and support!
Kyle takes the 3 girls to the Taylor Swift concert tonight...will blog that AWESOME story next week when I get back to blogging! FWIW, our neighborhood ROCKS!!!!
Saturday, June 1, 2013
Tuesday, May 28, 2013
VOICE QUILT! ONE WEEK LEFT!!! CALL IN NOW!!!!
Family! Friends! Please call and leave your story!
Only one week left!
Participation has been POOR at best--- :(
It's almost over and there are not very many messages for Kyle and the
kids--Come on now! It's not that hard folks!
Pass this one to anyone who may want to call!
Leaving a message on a VoiceQuilt is easy – just follow these steps:
| 1. | Call 1-877-OurQuilt (1-877-687-7845) (see http://voicequilt.com/overseas if calling from outside the US) | |
| 2. | When asked for your invitation number, enter 199413 | |
| 3. | Record your message, just as if you were leaving a voicemail Press # to review your message – or just hang up to save it | |
Thursday, May 23, 2013
Short Chemo Day Update
Per usual chemo day is....
...on Instagram, Round 8. (thebompie4)
I choose abstract pictures today with no people or faces.
Sorry if people are getting tired of them...I like
documenting our journey.
All Kyle's blood work is STILL great!
So chemo continues.
His weight is holding steady.
(Thanks to everyone and all the treats they bring him).
He feels pretty darn good.
And that makes us happy!
"We can choose to give up. give in. or give it our
all."
We are choosing "our all!"
and...
...That's what I've got for today.
...on Instagram, Round 8. (thebompie4)
I choose abstract pictures today with no people or faces.
Sorry if people are getting tired of them...I like
documenting our journey.
All Kyle's blood work is STILL great!
So chemo continues.
His weight is holding steady.
(Thanks to everyone and all the treats they bring him).
He feels pretty darn good.
And that makes us happy!
"We can choose to give up. give in. or give it our
all."
We are choosing "our all!"
and...
...That's what I've got for today.
Monday, May 20, 2013
I have something to tell you...
Before Kyle was diagnosed with cancer,
I felt the need to "warn" Josh (our oldest) of what was coming.
(lucky him)
I pulled Josh into my bedroom one day and sat him
down on my bed.
I am pretty sure I had tears in my eyes and I know for
a fact I had a heavy, heavy heart.
Something in the universe was swirling around my soul,
whispering loudly to me, that bad news was coming.
Other people tried to make light of my feelings.
They told me to stay off the internet.
But something louder than their voices was telling me...
...telling me of the impending blow.
The fracture, this fissure, to life as we knew it.
Something was blowing in on the wind, and it wasn't good.
I knew in my heart of hearts WHAT was coming.
I knew I had something to tell Josh.
Something important.
That day, as I took Josh into my room and sat him on my bed,
I looked at him and said, "Joshua, somehow, someway I have
a feeling that whatever we find out is going to be serious.
I just want to prepare you for what I think is coming."
I needed Josh to know what was coming. I felt very strongly
that he needed to be prepared. To know.
Then when we found out Kyle had terminal cancer, there were people who wanted us to hide the truth.
From family, from our children, from everyone.
To us, that wasn't fair. It didn't make sense.
People needed to know.
To grieve. To love. To share. To be. To process.
To come to terms. To surround us. To help us. To lift us.
As you can see (if you've been reading my blog), I am honest,
quite possibly to a fault.
But none the less, honest.
Now here's where YOU come in.
Whether "YOU" are family, or friends, or basically ANYONE
who loves Kyle...
I have something to tell YOU.
I feel very strongly that YOU need to hear this.
Right now Kyle is doing good, very very good in fact.
We are SOOOOOO thrilled with this fact.
(So thrilled. So thrilled. So thrilled.)
Jumping up and down--giddy kinda thrilled.
We love it and embrace it and rejoice in it.
This, however, will NOT always be the case.
So this is what I feel I must say to YOU.
Take the time NOW to be with him, and make memories.
Do NOT make excuses, or wait for another day.
Time will keep passing.
And if you're not careful...
Well, YOU know the answer to that.
So here's what I want to say to YOU...
Seize the moment. Make hay while the sun shines. Carpe diem.
Grab the chance. Smell the roses. Take the opportunity.
Life is short. Don't be fooled by the calendar.
Enjoy yourself, it's later than you think. Go for it.
Spend the afternoon with someone you love. Start immediately.
Make no exceptions. Make a memory. Don't waste time.
Make the most of it. Don't put off tomorrow what you can do today. There's no time like the present. Don't be an idiot.
and lastly...
Whether it's the best of times or the worst of times, it's the only time we've got.
Here's the thing...
everyone thinks they have time.
And so YOU keep pushing things YOU need to do to a later date.
With cancer, you just don't know how much...time you have.
I don't want anyone, who WANTS to make memories with Kyle,
to regret it as they look backwards and find they didn't make
the time.
Just make the time.
Because before you know it, time will be gone.
I'm not trying to be fatalistic. I'm just being factual.
He only has so much of that time stuff left.
Why not hang out with him, or call him, or take him to lunch,
or visit or spend what he has, while he's GOOD, making that
memory with YOU?
Whether its many many month or several years,
there is a limited amount now.
DO NOT regret that you didn't make time.
I know that life is busy, and time often gets away from us--
but this is a case when you can't let it.
Get away.
Or YOU will have regrets.
When you look back, and realize you didn't make the time
for your brother, or friend, or dad, or cousin, or boss, or husband, or WHATEVER he is to YOU.
I am trying to seize EVERY possible moment of time I can.
This weekend it meant taking him with me on a photo shoot.
(That sounds so professional--I am anything but!)
It meant delaying cleaning the house and catching a movie
we would normally wait to see in Redbox.
It meant just saying "Let's go!" and grabbing dinner with
friends.
It means going up to chemo and every.single.doctor.appointment
with him.
I will never get this time back and I will NOT look back
with regret and say I didn't make all the time I could for
this man that I have called my best friend for 24 years.
In case YOU'RE worried about who YOU are....???
I'm not talking to anyone in particular.
There is no one on my mind as I type this.
Just YOU, whoever YOU are...as YOU read this...
...Maybe YOU needed to hear it.
Make time. Make memories.
Don't look back with regret YOU didn't make either
with someone you love.
The dishes can wait. The laundry piles can wait.
Homework can wait. Pretty much anything can wait.
The thing that will NOT wait for YOU?
Time.
Don't let it get away.
That's what I've got for today.
I felt the need to "warn" Josh (our oldest) of what was coming.
(lucky him)
I pulled Josh into my bedroom one day and sat him
down on my bed.
I am pretty sure I had tears in my eyes and I know for
a fact I had a heavy, heavy heart.
Something in the universe was swirling around my soul,
whispering loudly to me, that bad news was coming.
Other people tried to make light of my feelings.
They told me to stay off the internet.
But something louder than their voices was telling me...
...telling me of the impending blow.
The fracture, this fissure, to life as we knew it.
Something was blowing in on the wind, and it wasn't good.
I knew in my heart of hearts WHAT was coming.
I knew I had something to tell Josh.
Something important.
That day, as I took Josh into my room and sat him on my bed,
I looked at him and said, "Joshua, somehow, someway I have
a feeling that whatever we find out is going to be serious.
I just want to prepare you for what I think is coming."
I needed Josh to know what was coming. I felt very strongly
that he needed to be prepared. To know.
Then when we found out Kyle had terminal cancer, there were people who wanted us to hide the truth.
From family, from our children, from everyone.
To us, that wasn't fair. It didn't make sense.
People needed to know.
To grieve. To love. To share. To be. To process.
To come to terms. To surround us. To help us. To lift us.
As you can see (if you've been reading my blog), I am honest,
quite possibly to a fault.
But none the less, honest.
Now here's where YOU come in.
Whether "YOU" are family, or friends, or basically ANYONE
who loves Kyle...
I have something to tell YOU.
I feel very strongly that YOU need to hear this.
Right now Kyle is doing good, very very good in fact.
We are SOOOOOO thrilled with this fact.
(So thrilled. So thrilled. So thrilled.)
Jumping up and down--giddy kinda thrilled.
We love it and embrace it and rejoice in it.
This, however, will NOT always be the case.
So this is what I feel I must say to YOU.
Take the time NOW to be with him, and make memories.
Do NOT make excuses, or wait for another day.
Time will keep passing.
And if you're not careful...
Well, YOU know the answer to that.
So here's what I want to say to YOU...
Seize the moment. Make hay while the sun shines. Carpe diem.
Grab the chance. Smell the roses. Take the opportunity.
Life is short. Don't be fooled by the calendar.
Enjoy yourself, it's later than you think. Go for it.
Spend the afternoon with someone you love. Start immediately.
Make no exceptions. Make a memory. Don't waste time.
Make the most of it. Don't put off tomorrow what you can do today. There's no time like the present. Don't be an idiot.
and lastly...
Whether it's the best of times or the worst of times, it's the only time we've got.
Here's the thing...
everyone thinks they have time.
And so YOU keep pushing things YOU need to do to a later date.
With cancer, you just don't know how much...time you have.
I don't want anyone, who WANTS to make memories with Kyle,
to regret it as they look backwards and find they didn't make
the time.
Just make the time.
Because before you know it, time will be gone.
I'm not trying to be fatalistic. I'm just being factual.
He only has so much of that time stuff left.
Why not hang out with him, or call him, or take him to lunch,
or visit or spend what he has, while he's GOOD, making that
memory with YOU?
Whether its many many month or several years,
there is a limited amount now.
DO NOT regret that you didn't make time.
I know that life is busy, and time often gets away from us--
but this is a case when you can't let it.
Get away.
Or YOU will have regrets.
When you look back, and realize you didn't make the time
for your brother, or friend, or dad, or cousin, or boss, or husband, or WHATEVER he is to YOU.
I am trying to seize EVERY possible moment of time I can.
This weekend it meant taking him with me on a photo shoot.
(That sounds so professional--I am anything but!)
It meant delaying cleaning the house and catching a movie
we would normally wait to see in Redbox.
It meant just saying "Let's go!" and grabbing dinner with
friends.
It means going up to chemo and every.single.doctor.appointment
with him.
I will never get this time back and I will NOT look back
with regret and say I didn't make all the time I could for
this man that I have called my best friend for 24 years.
In case YOU'RE worried about who YOU are....???
I'm not talking to anyone in particular.
There is no one on my mind as I type this.
Just YOU, whoever YOU are...as YOU read this...
...Maybe YOU needed to hear it.
Make time. Make memories.
Don't look back with regret YOU didn't make either
with someone you love.
The dishes can wait. The laundry piles can wait.
Homework can wait. Pretty much anything can wait.
The thing that will NOT wait for YOU?
Time.
Don't let it get away.
That's what I've got for today.
You've got to love a man that can wear an apron AND make crepes!
And watch out--he KNOWS how to wield a spatula!
Sunday, May 19, 2013
Settebello
PHEW!
What a week last week was.
My blogging has suffered.
I know you've ALL been holding your breath!
(ha ha)
Monday was Lab Tests and Dr Visits and Settebello Fundraiser
night.
Tuesday was Kyle's port surgery (which total time up
at Huntsman was 4 1/2 hours start to finish....it was a long
day).
Wednesday, we took a deep breath and Thursday we jumped
right back into chemo.
Friday was Kyle's half work day and half exhausted day.
I took a nap from sheer exhaustion and ...
Saturday was the day we got to take Sr. Pictures for a family
friend, clean the house day, go a movie with your husband
who can sit still for two hours on his chemo weekend and
out to dinner night with friends.
We had a full schedule, but it was a good week.
The fundraiser, at Settebello, put together by owner
Michael Brooks and old pal Jennifer Townsend was a smashing
success.
The thing about cancer is the constant roller coaster ride
you seem to find yourself on.
Emotional roller coaster that is.
Kyle and I said it seems to either be the "highest high"
or the "lowest low" with not a bunch of "level in the
middle stuff."
It gets exhausting just riding the emotional highs and lows
of this disease.
Sometimes swinging from high to low and back again all in the
same day.
Settebello night was the highest of highs.
Literally.
You always go into these things a little nervous and think
"Geez, what if no one shows up?"
Kyle went down to Settebello for lunch with the ladies from
work and got to see some ward friends, work friends and old
friends who were there to support him.
We headed down as a family at about 5 pm and spent the night
there until closing time at 10.
We were met by family, friends, co-workers, old mission companions, old high school friends and a slew of people from
both the past and present.
It was TRULY WONDERFUL to see so many people who made time
in their day to come out and support our family.
It was humbling. It was joyful. It filled our buckets with
enough good energy to start another 9 week journey through
chemo.
We hugged and laughed and shared stories and caught up.
We ate and laughed some more and took pictures and felt loved.
We basked in the glory of simply being surrounded by love
and people who care.
We said over and over, more than ANY monetary donation (which was GREAT!! Don't get me wrong!), but the BIGGEST "donation" to
us was the love and friendship that QUITE LITERALLY filled
our souls with goodness and hope and courage and joy and
happiness and peace and all things GOOD.
Good, from the top of our heads to the tips of our toes.
We tingled with the good energy that was buzzing around us.
It was a pleasure to meet Michael Brooks, the owner of
Settebello and thank him for the goodness and kindness of
this act.
(How in the world do you EVER thank someone for doing this for
your family anyway?)
But Thank You Michael and Thank You Settebello and Thank
You Jennifer Townsend for giving Kyle and I and the kids a night
that will remain in our hearts FOREVER as a night filled
with goodness and joy and happiness in a journey that often
feels heavy and tiresome and sad.
I've looked at these pictures dozens of times and just smiled.
From ear to ear.
Kyle has too.
Thank you for this night!
Thank you oh thank you oh thank you!
We will always treasure it, in our hearts and memories as
a good good good good night.
I won't take the time to tag who everyone is in all these
pictures...except for Michael and Jennifer who are in a few
half way down this huge pile 'o pictures.
Just FYI Settebello (and Michael)--all of our friends who had
never ventured downtown to eat here ALL said it was seriously
the BEST pizza they have ever had. We hope for YOUR sake,
and for your goodness and kindness to US, that they will all
venture back ...over and over and over!)
We know WE will be back.
Thank you again to ALL of you who took a minute of two
out of your VERY busy lives to bless our lives that night.
You will never know how much it meant to our family.
What a week last week was.
My blogging has suffered.
I know you've ALL been holding your breath!
(ha ha)
Monday was Lab Tests and Dr Visits and Settebello Fundraiser
night.
Tuesday was Kyle's port surgery (which total time up
at Huntsman was 4 1/2 hours start to finish....it was a long
day).
Wednesday, we took a deep breath and Thursday we jumped
right back into chemo.
Friday was Kyle's half work day and half exhausted day.
I took a nap from sheer exhaustion and ...
Saturday was the day we got to take Sr. Pictures for a family
friend, clean the house day, go a movie with your husband
who can sit still for two hours on his chemo weekend and
out to dinner night with friends.
We had a full schedule, but it was a good week.
The fundraiser, at Settebello, put together by owner
Michael Brooks and old pal Jennifer Townsend was a smashing
success.
The thing about cancer is the constant roller coaster ride
you seem to find yourself on.
Emotional roller coaster that is.
Kyle and I said it seems to either be the "highest high"
or the "lowest low" with not a bunch of "level in the
middle stuff."
It gets exhausting just riding the emotional highs and lows
of this disease.
Sometimes swinging from high to low and back again all in the
same day.
Settebello night was the highest of highs.
Literally.
You always go into these things a little nervous and think
"Geez, what if no one shows up?"
Kyle went down to Settebello for lunch with the ladies from
work and got to see some ward friends, work friends and old
friends who were there to support him.
We headed down as a family at about 5 pm and spent the night
there until closing time at 10.
We were met by family, friends, co-workers, old mission companions, old high school friends and a slew of people from
both the past and present.
It was TRULY WONDERFUL to see so many people who made time
in their day to come out and support our family.
It was humbling. It was joyful. It filled our buckets with
enough good energy to start another 9 week journey through
chemo.
We hugged and laughed and shared stories and caught up.
We ate and laughed some more and took pictures and felt loved.
We basked in the glory of simply being surrounded by love
and people who care.
We said over and over, more than ANY monetary donation (which was GREAT!! Don't get me wrong!), but the BIGGEST "donation" to
us was the love and friendship that QUITE LITERALLY filled
our souls with goodness and hope and courage and joy and
happiness and peace and all things GOOD.
Good, from the top of our heads to the tips of our toes.
We tingled with the good energy that was buzzing around us.
It was a pleasure to meet Michael Brooks, the owner of
Settebello and thank him for the goodness and kindness of
this act.
(How in the world do you EVER thank someone for doing this for
your family anyway?)
But Thank You Michael and Thank You Settebello and Thank
You Jennifer Townsend for giving Kyle and I and the kids a night
that will remain in our hearts FOREVER as a night filled
with goodness and joy and happiness in a journey that often
feels heavy and tiresome and sad.
I've looked at these pictures dozens of times and just smiled.
From ear to ear.
Kyle has too.
Thank you for this night!
Thank you oh thank you oh thank you!
We will always treasure it, in our hearts and memories as
a good good good good night.
I won't take the time to tag who everyone is in all these
pictures...except for Michael and Jennifer who are in a few
half way down this huge pile 'o pictures.
Just FYI Settebello (and Michael)--all of our friends who had
never ventured downtown to eat here ALL said it was seriously
the BEST pizza they have ever had. We hope for YOUR sake,
and for your goodness and kindness to US, that they will all
venture back ...over and over and over!)
We know WE will be back.
Thank you again to ALL of you who took a minute of two
out of your VERY busy lives to bless our lives that night.
You will never know how much it meant to our family.
Thank you!
Michael Brooks and Jennifer Townsend
Thursday, May 16, 2013
VOICE QUILT REMINDER
From Michele Chisholm (who is doing this for our family):
Hello everyone, I am going to put a plug in for the voice quilt. I did a voice quilt for a dear friend who passed away from brain cancer. I started my quilt too late and I'm not sure that she was even able to understand the amazing, beautiful words that had been spoken to her. We decided to start Kyle's voice quilt while he is still doing so "well". We want him to hear how loved he is. We want him to KNOW the difference he has made in people's lives. This doesn't have to be a farewell...it's a "we love you so much and NOW we are going to tell you". PLEASE don't wait!!! We only have two weeks left. Get your thoughts in order this weekend and call. We have only had two people that aren't procrastinating. It's ok if it's hard...it's ok if you cry. I had to record my friend's three different times before I said what I wanted to say. This is a priceless gift that you will give to BOTH Kyle AND his family. So many desperately want to help the Nielson family...THIS is how you can help them this week. So PLEASE take five minutes out of your day and call into voice quilt!
PLEASE take the time to do this.
Tell a funny story.
Share a memory.
Family. Friends.
Please.
Hello everyone, I am going to put a plug in for the voice quilt. I did a voice quilt for a dear friend who passed away from brain cancer. I started my quilt too late and I'm not sure that she was even able to understand the amazing, beautiful words that had been spoken to her. We decided to start Kyle's voice quilt while he is still doing so "well". We want him to hear how loved he is. We want him to KNOW the difference he has made in people's lives. This doesn't have to be a farewell...it's a "we love you so much and NOW we are going to tell you". PLEASE don't wait!!! We only have two weeks left. Get your thoughts in order this weekend and call. We have only had two people that aren't procrastinating. It's ok if it's hard...it's ok if you cry. I had to record my friend's three different times before I said what I wanted to say. This is a priceless gift that you will give to BOTH Kyle AND his family. So many desperately want to help the Nielson family...THIS is how you can help them this week. So PLEASE take five minutes out of your day and call into voice quilt!
PLEASE take the time to do this.
Tell a funny story.
Share a memory.
Family. Friends.
Please.
Leaving a message on a VoiceQuilt is easy – just follow these steps:
| 1. | Call 1-877-OurQuilt (1-877-687-7845) (see http://voicequilt.com/overseas if calling from outside the US) | |
| 2. | When asked for your invitation number, enter 199413 | |
| 3. | Record your message, just as if you were leaving a voicemail Press # to review your message – or just hang up to save it | |
Monday, May 13, 2013
Just because I can say it AGAIN...shrinkage...shrinkage...shrinkage
Follow up appt today with Dr Sharma.
As reported Friday, we (STILL) have tumor shrinkage.
Tumors are stable and not putting off as much "bad"
cancer "radiation". (Best way I can explain it).
His tumor marker has gone from 77 at diagnosis to
31 (which is now in the normal range).
This (simply--sort of) detects the cancer in his blood.
(kinda). But it's the blood marker they use to see
where he's at with his cancer. That's all you need to know.
Good news all around.
Chemo to continue on Thursdays for another 8 week round.
Dr Sharma said that he expects more shrinking (never a guarantee, but he would expect to see it).
He said that this good result also probably pushes Kyle to the
OTHER side of the "bell curve" for mortality rates with this
cancer.
Meaning IF Kyle had "bad" results this time (which he DID NOT) it would mean in the "averages" of 6 to 18 months survival, Kyle would be knocking on the pearly gates closer to the 6 month mark.
The good results today usually equate with jumping to the longer
life expectancy. MORE TIME!
He ALSO said again today, Kyle will make his very own numbers
with this. No one like Kyle has ever had this and no one knows what Kyle will do. (He doesn't know Kyle very well yet...
he should be expecting Kyle to BREAK RECORDS!)
The one question I wanted to ask and didn't dare was HOW LONG?!
But since there is usually no predicting with this kind of
cancer (which we've been told)--we will just take it in 9 week
chunks and hope for MANY MANY 9 week chunks of good news.
SO YAY for good numbers!
YAY for good news!
Keep us in your prayers for good chemo results and good
blood work and good responses for the next go 'round.
Let's kick some cancer A&& for as long as we can!
As reported Friday, we (STILL) have tumor shrinkage.
Tumors are stable and not putting off as much "bad"
cancer "radiation". (Best way I can explain it).
His tumor marker has gone from 77 at diagnosis to
31 (which is now in the normal range).
This (simply--sort of) detects the cancer in his blood.
(kinda). But it's the blood marker they use to see
where he's at with his cancer. That's all you need to know.
Good news all around.
Chemo to continue on Thursdays for another 8 week round.
Dr Sharma said that he expects more shrinking (never a guarantee, but he would expect to see it).
He said that this good result also probably pushes Kyle to the
OTHER side of the "bell curve" for mortality rates with this
cancer.
Meaning IF Kyle had "bad" results this time (which he DID NOT) it would mean in the "averages" of 6 to 18 months survival, Kyle would be knocking on the pearly gates closer to the 6 month mark.
The good results today usually equate with jumping to the longer
life expectancy. MORE TIME!
He ALSO said again today, Kyle will make his very own numbers
with this. No one like Kyle has ever had this and no one knows what Kyle will do. (He doesn't know Kyle very well yet...
he should be expecting Kyle to BREAK RECORDS!)
The one question I wanted to ask and didn't dare was HOW LONG?!
But since there is usually no predicting with this kind of
cancer (which we've been told)--we will just take it in 9 week
chunks and hope for MANY MANY 9 week chunks of good news.
SO YAY for good numbers!
YAY for good news!
Keep us in your prayers for good chemo results and good
blood work and good responses for the next go 'round.
Let's kick some cancer A&& for as long as we can!
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