Tuesday, September 9, 2014

All You Need Is Love






Salsa Sunday?

It was a smashing success.

I set up oodles of Superman shirts
on a clothes line and had salsa and
chips and candy and treats.

Lawns were mowed and chairs were 

cleaned and then we waited.

And people came.

And came.

And came.

A friend sent a photographer who donates
her time to (terminal) cancer patients and she took a bazillion pictures of the event 
which we can't wait to see.

Our backyard overflowed with people
and love and it was a magical night
celebrating Kyle's milestone.

(Does that mean we're living on 
borrowed time right now?)

I don't know the answer to that.

I don't know how long we get, but I
do know that the love we felt and the
people we hugged filled our souls
so very much.

Thank you for coming.
Thank you for loving Kyle.
Thank you for showing him that he
matters in the grand scheme of this
thing called life.

I've said it over and over and
over again...it's all about love.

It boils down, oh so simply, to 
that one thing.

Love.

Love the people that are in your life.
And let them know.  We don't all have
terminal cancer but you never know
how much time you have and when things
can change.  We spend too much time
worrying about things that don't matter
and we spend too much time being distracted.

Live now, for now.
Love now, for now.

Thank you all (so much) again and again
for making Salsa Sunday a smashing
success.

Thank you.  Thank you.  Thank you.

That's what I've got for today.

Saturday, September 6, 2014

One Last Shout Out for Salsa Sunday.....

One last shout out for
Salsa Sunday...

Come celebrate with us
tomorrow from 6 pm til the 
food runs out or we go to bed.

If you want to bring a treat or
something to share?  

Fabulous.

If you want to just show up 
and hug Kyle?

That's fabulous too.

Please come celebrate and
give a shout out to this
guys who's still standing
after 18 months, 1 port surgery,
countless hours of chemotherapy, 
2 rounds of Y 90, several
biopsies, doctor visits
too numerous to count, blood
draws and needle sticks
that are not for the weak-hearted,
vomiting, weight loss, weight gain,
hair thinning, exhaustion, chemo
brain and more...

Through it all he does it with
a good attitude, a heart of gold
and a smile.  I admire his
grace so very much as he's travelled
this road...he's been a fabulous
example of love and strength
and courage to me and the kids.

So lets celebrate a life
that deserves celebrating!

That's what I've got...




Wednesday, September 3, 2014

They say No News is Good News....

But dang it all!

We HAVE NEWS and it's GOOD NEWS!!

We just got done with Dr Sharma (and I *swear* he
cracked a smile today...it may have been a trick of the
light but I'm pretty sure I saw one!)

and we got the results of Kyle's PET scan he had
yesterday!

That Y 90 is some pretty awesome stuff.

2 1/2 months ago Kyle's liver was starting to 
look like a Christmas tree with all it's glowing
and spots that were lighting up....

TODAY?  Not so much.

The glow-y spots and the lighting up spots?

They are not there so much.

There are a few little lights here and there but
NOTHING like last time.

His lungs have stayed stable as have his lymph nodes.

What does this mean?

It means Y 90 wiped out a bunch of cancer again
and his overnight stay at the Hotel Huntsman on July 23
was worth it.

It means the awful regiment of chemo he's on is
holding everything else steady everywhere else
in his body.

It means...

WE CAN FREAKING CELEBRATE GOOD NEWS 

*AND*

18 MONTHS AND ONE DAY at Salsa Sunday!

Thanks for prayers, good wishes and thoughts, texts
and love....

because per usual it keeps us going.

What have I got today?

I've got a smile right along with Dr. Sharma,
that's what I've got!

----------------------------------


Come join us this Sunday and celebrate.
Salsa Sunday our house, be there or be square.

-----------------------------------


Wednesday, August 27, 2014

Save The Date. Save The Date. Save The Date.


Attention friends, neighbors, co-workers, enemies,
relatives, in-laws, out-laws, family, stragglers....

We are having a special event here at the Nielson household.

On Sunday September 7, 2014 we are celebrating
18 Months PLUS One Day!

What is this "one day", you ask?

When Kyle was first diagnosed with cancer in March of 
2013, he was told he had "6-18 months"....you know...
to live.

Well, we are SO thrilled and happy and joyful and gleeful
and overjoyed and excited and ecstatic and happy and 
rapturous and jubilant and euphoric and giddy and elated
(and that's as many synonyms as I could think of without
a thesaurus) that we are CELEBRATING this milestone!!!!

(The 18 months PLUS ONE DAY!!! milestone!)

We are having "Salsa Sunday" at our home 
Sunday Sept. 7 from 6 PM onward.

Come give the old guy a hug and tell him you're glad
he's still here and you love him.

Everyone likes to be told they're loved and get
a hug when they've defied the odds (and even
when they haven't!)

Stay for 5 seconds, or 5 minutes or 5 hours... 

(although we all have work and/or school the next day 
so we may leave you alone in the backyard after a certain
point alone....all by yourself...but if you're good
with that?  Stay for 5 hours.)  

All are welcome.

Our home is your home.

Please bring a favorite salsa or dessert to share 
if you would like to....we would love it!

-----------------------------------

On a little more serious note, Kyle has scans next
week and results on Weds.  (you know that bloody
awful PET scan, the one where they peek inside and
see what the *#&#&@ cancer is doing inside his body)

Ya, that one.

The ones that makes me nauseous and get hives while
I wait to hear the news.  

Yup, the very same one.

Anyway, we will keep people posted.

This is where we hear how well Y 90 worked...
it's a crap shoot like always, so we keep rolling
the dice and playing the game....

Trying to embrace any extra time we've been
given.

--------------------------------------

So lets forget about PET scans for a minute and
remember Sunday September 7 @ 6 PM here at our
house for Salsa Sunday!

YAY for salsa!
Yay for parties!
Yay for beating the odds!
Yay for Kyle!

Save The date.

That's what I've got folks, that's what I've got!

 Kyle really really wants you to come hug him!


And this is Ruby's pitiful sad face if you DON'T
come love on her daddy daddy!  Don't make Ruby sad....

Sunday, August 17, 2014

We're ALIVE!!!!!

The good news is that Kyle survived Y-90 and 
the subsequent pain and hospital stay.

And so that next Friday we packed up and headed off
to our annual beach trip in California.

It's the best.

We had all of his siblings and spouses and lots
of cousins and his parents, and my sister and family
stopped by for a day on the beach as well.

We did nothing but relax, eat, play in the sand and
ocean and build sand sculptures.

It was a top notch week.

Kyle and I were lucky enough to grab breakfast one day
with another Cholangio (new) friend Paul and his wife
Angela...she made some killer quilts for Kyle's 
Fundraiser and sent one to us as a spare.  She does
great work and it was fabulous to sit and chat with
her and her husband and hear their journey.  

They were lovely people and fingers crossed that
maybe we will all meet up again next year over 
breakfast again.

In the meantime, here are a "few" of the 1082 pictures
I took on my Iphone.  I should be embarrassed, but
I'm not. 

I like taking pictures.

In no particular order, here is our week at the beach.
We loved every.single.minute of it.

Thanks California for the great weather, the sound
of ocean waves to go to sleep to every night, sun
and laughter.

It's always so hard to leave this great place.



 Sand Tower

 Kyle's happy place
 Sand prep
 Pier Sunsets
 Kyle and his sister planning the days sand art
 Kyle LOVES (wink wink) a cheesy photo.
 Cousins contemplating life
 This was our view the night we drove in....THEE most gorgeous sky I have ever seen
 Kyle working on Sand Darth
 Street Fair Magic
 Boogie Boarding fool
 How many people does it take to build a sand sculpture? 
 Footprints in the sand
 Sand tools
 C C C Cousins
 White kids can or cannot jump
 What should I build today? He asks
 Life under the umbrella
 The night life, good times.
 Daily view, not too shabby
 Fine tuning 
 Sunsets at the Pier
 Sand Doodle
 What mom?
 Kyle and his (not twin) brother Bud.
 Victory!
 Finished products
 Chillaxin'
 Those tools did a good job today
 The Tower
 Fish Tacos...worth a 12 hour drive for
 Grace and Puddy
 Like Father, like Son
 We love Phils BBQ
 Kyle at rest
 The whole damn family
 Sand turtle, which I may or may not have fallen on and crushed
 Super Kyle
 He's in the zone
 Fabulous flowers
 Dad Grace and Olivia
 Ice cream at the Harbor is a MUST (several times, of course)
 27 for dinner at Phils? Yes please.
 Josh and Kyle working on something
And last but not least MY VERY FAVORITE picture of Kyle.

I love how good he looks!  (He was actually starving
and exhausted here, but he pretends well and we got
some food in his belly right after this picture!)

--------------------------------------------

Just FYI: 

Save the Date for Sunday Sept 7, 2014.

This will be Kyle's 18 month PLUS one day mark with cancer.

He was originally give 6-18 months to live when he
was diagnosed.....and we plan on him still being here
in two weeks.

Now he's not one for parties, weddings, birthdays or
funerals...but you had better be SURE we are celebrating
18 months and ONE DAY in this case!

We will be having "Salsa Sunday" at our house 6 pm
onward that day. 

We will provide the chips and salsa and some 
other stuff....

Open House style, bring a dessert to share.

More details to come....but we would love anyone who
wants to (and we hope SOME people want to) to come
by and hug Kyle and celebrate the fact he's still
here, when technically doctors told him he shouldn't be.

That's worth celebrating in our opinion.

So here's to beach trips!

And here's to "Salsa Sunday on September 7" (I like the
alliteration of it all....lots of "S's")

And that's what I've got for today!