Friday, March 30, 2012

A week later

Well,
we've been home a week.
And I think we both are
starting to feel more like
ourselves again.

I knew that going to Salt Lake
would be hard on Travis,
but had no idea how stinking tired it
would make me too!

But it's so nice to be home,
surrounded by our
LOVELY, LOVELY ladies,
dear friends,
great family members...
and our bed.
OH boy, we missed you bed.

Travis is doing ok.
If you remember,
before we went to start round 1
he was really struggling.
He was in a lot of pain,
and just felt really off.
And then he had the
reoccurring fever.
And that darn fever
made his sweat.
A lot.
Making him not sleep well...at all.

While we were there they
ran test,
after test,
after test,
to see if he had some sort of
infection-
but everything seemed to look fairly normal,
so we were hoping
he'd come home and the fevers would stop
and he'd feel a bit better.

Sadly though,
the fever is still here and
the only explanation for it is cancer.
FREAK.

That being said,
he's figuring out how to manage it
a bit better and has worked out a way to
get a little more sleep and less sweats.
So while it's not perfect,
he is sleeping a bit more.

His pain level seems to be a bit
better then it was before,
and that is really good.
It's still there, but not
near as persistent and unbearable.

He seems to feel pretty terrible in the mornings.
(I call it his morning sickness).
He throws up and has to take it easy,
but then after he relaxes a bit
he's able to got to work for a good chunk of the day.

He also is eating a bit more then before.
Not a lot...
but more.

And with all the delicious dinners we've
been brought- he's been well fed!

I think each day he is getting
more energy, and less swollen.
And he's starting to feel more like himself.
It's just so nice to be home!

We have been beyond
overwhelmed with love the past week.
I've had a hard time sleeping because my
head just swirls when I think of what people
have done for us, and because I'm so grateful
for the people we have in our lives.

I feel like because of how well taken care of we
are, we both feel uplifted and stronger,
and ready to go back on the 9th.

Oh boy.

Thank you all.
Saying that isn't enough,
but I hope you understand how heartfelt it is.






Friday, March 23, 2012

{IL2-Round 1}

Well,
we made it.
1 week onto our first course with IL-2.

If you follow on facebook you know that
this week didn't really go as planned.
It's been rough.
I really feel the need to document the week,
but it's all a little blurry...
so bear with me.

We drove on a very small
amount of sleep Monday morning through
the canyon---that was covered in snow.
That should have been our first clue that
it was gonna be a little bumpy...

Once we got there we were surprised at how
relaxed everything was.
We dosed in our room for a bit before
they came and put a picc line in.
(Note to self: Do not watch next time.)
Yuck.

Then the Doctors and Nurses started coming in
and they started drawing labs before we could start.
Then they hooked him up to his pre-meds....
And his tree looked like this.
I was in awe when I took this picture of how much
crap was going into him,
and sadly,
by the end of the week there
was quite a bit more.


Then just after 1:00 they started the first dose.
This tiny bag is the IL-2.
It only takes 15 minutes to drip.
I still can't believe all the havoc this
small bag does to your body...
It's astounding to me.
I'd mentioned before that they said the side
effects were like a superflu. We were picturing a lot
of throwing up type symptoms.
But our experience was different then that.

The nurses explained that the worst side effect for
most people is rigors. Severe and uncontrollable
shaking. And it usually happens about 2 hours
after each dose.

The first dose was fine really.
He felt a little off maybe,
but otherwise fine.

The Doctors assured us that was normal
and the effects get worse with each dose.

They dosed him again that night at 10:00
and he seemed to do fine during the night,
but at some point he rigored, but I can't remember
when, or for how long.
I do know that it wasn't awfully terrible,
and he handled it well.

Dose 3 happened the next afternoon,
and this is when we started to understand the hell
that is IL-2.
He started rigoring right at 2 hours after this dose
and it was very hard on his body.
They gave him demoral and it kicked in
pretty quickly helping to control the
rigors, but then he had his first bout
with nausea and threw up.

And then he slept a pretty painful sleep.

The take blood after each dose
and run labs constantly throughout the
day. They found his kidney function wasn't
looking great so we spent the rest of the day
feeling a little blue that he wouldn't be able to dose
again that night,
and we were tired.
And bored.
And tired.
So tired.

Around 11 they decided that his labs looked
ok, and dosed him up again.

Dose 4 is what I call the dose from hell.
And I wish I could forget what it was like-
because it was awful.

The drip ended at 11:30 and I knew
he would rigor by 1:30ish, so I stayed
awake and watched him.
And right on the dot the rigors started.

The nurse came in very quickly and gave him
a double dose of demoral.

And they didn't stop.

If you haven't seen anyone rigor,
it's hard to explain.
It's unlike anything I've ever seen.
It's not just a little shaking,
the bed is moving with him because he's shaking
so hard. And meanwhile it's doing a number
on all of his muscles, and his chest.
(And his rib, naturally).

And it messes heavily with his heart
and blood pressure.
Instead of the flu symptoms we were imagining,
it just straight up tried to kill his organs,
and give him a heart attack.
It was terrifying.

The entire week his heart rate was high.
But during this particular bout it was anywhere from
160-173.
For a little over an hour he was full on rigoring.

And it was honestly like a scene from
Grey's Anatomy.

The nurses were freaking out and
calling the Doctors about what to
do because his heart was really heavily stressed.
And another nurse was dosing him
with every-
single-
medicine-
she could possibly find.

And I was just standing there helpless.
Man, it was rough.
I felt so awful that he was going through it all.

Finally after all of that
they were able to calm him down
and he was able to sleep.

And I found a bathroom to cry in.

And I crawled in bed at 4:30 am.

And still feel in shock from watching it.
Trav, at least, doesn't remember it well.
And I'm glad he doesn't because he gets to do
it all over again.
Ugh.

The next morning the team of Doctors we
worked with each morning said things like
"We didn't expect him to go downhill so fast."
and
"Those side effects were much more severe then we saw coming."

His kidney wasn't functioning well.
As well as his liver.

So we just sat around the next day hoping for it to
improve and letting them give him any, and all,
meds they thought would help.

At one point they decided to do an ultrasound
to see if there was a blockage in the kidney.

They thought they had found one,
and decided to put a stint in so he'd
have better kidney function, so maybe
we could dose again.

They were very weary about damaging
his kidney-cause it is the only one he has...
smart thinking, I think.

He went in for surgery Thursday
afternoon, and when the surgeon
got in there he saw that instead of a blockage
there is a cyst in his kidney.

So basically we wasted that day,
and put Trav though an unnecessary
surgery. That night he experienced
some pretty awful back spasms and was
in a lot of pain.

They came in hours later
and said his kidney function was
improving quite a bit
(probably due to the medicine they were giving him).
But that his liver was looking pretty bad.

And they decided to stop dosing him for the week.

We are bummed.
We wanted 10.
We got 4.

It's not ideal.
But we all think he had
some sort of infection heading in
to the week, and it made it harder on him
then was necessary.

The amount you get is important,
making one Dr feel that this medicine
is 'too toxic' for trav's body to handle.
But he wants to at least try again in 2 weeks
and hope we can get 5 in.

Another Dr. said that while
the number of doses is important,
side effects are more important,
and he had those!
Plenty!

We were able to come home today
around 1 and have been napping on and off
since then. We are both exhausted.

Trav's feeling ok.
Really tired,
And really swollen, (another side effect)
and hooked up to oxygen for a few days,
but feeling ok.
The liver should fix itself and
he's on some antibiotics
and we are both just praying that he
can start to feel himself again.

We are planning on taking it easy this
weekend and getting some strength back for T.

I'm terrified to fall asleep tonight
and fairly certain I'll be dreaming of
rigors, and lots of beeping machines.

So nice to be home!
So nice to see our girls!
So grateful to our visitors,
prayers, texts, emails, gifts, messages
and phone calls.

We have so much support.
We love and appreciate you all.
Keep praying for Travis.
I find him worth praying for.
He's amazing, and I'm kinda proud of him.
He really needs to feel well before we go back.
They are worried he has an infection,
but they've looked everywhere
and just can't find anything.

Love to all.
And we are off to bed.

Saturday, March 17, 2012

Here. We. Go.

I'm pretty sure
that this week wins the
award for
Worst
Possible
Week
Ever.

Between Travis feeling just terrible,
and me trying to do
everything I possibly can
to make him feel better
and be able to be lazy-and hopefully recoup,
we are both spent.

And just when I think I'm cried out..
I find out I'm not.

So a week long stay
in the ICU sounds delightful....

Ok, not really.

Anyhow,
Travis spent most of
Thursday night in the ER
trying to figure out what in the
world is going on with his body.

Chest X-ray-
looked normal (well, normal for him).
So they opted to do an ultrasound on his gallbladder.
Ultrasound-
looked normal.
So they opted to do a CT scan to look for blood clots.
CT scan0
looked normal for him.

(Good and Bad).
We don't want surprises but
we'd love an answer,
and a fix.

They took a lot of blood too
and nothing was too different.

So they sent him home with some antibiotics.

He's still not doing great.
He's fevering often and still in a lot of pain.
And still not eating great.
But I do think he's improved a little.
Just not a lot.

Anyhow tomorrow we are finishing the
preparations for the beginning of our IL-2 journey.
(Making sure everything is packed, house is ready for visitors,
kids are ready, and giving us all good old priesthood blessings.)
And early Monday morning we begin.

Oh man.
We are scared.

Truth.

So many of you keep asking what you can do,
And I have an idea for you!
And I'm hoping you all follow through!
And share with friends and maybe they will help out too...

I'd love for you to comment here for Travis.
Tell him how awesome he is.
Tell him why he can handle the torture.
Tell him how lucky he is to have such a fab wife. (I kid).
Tell him how he is your hero.
He's mine.
Share a story to make him laugh during the week.
Tell a dirty joke if you'd like. We aren't above that...
Tell him anything that might
entertain him,
strengthen him,
make him think,
make him laugh,
cry..
whatever you feel like telling him.

I plan on reading them to him when he is
feeling coherent enough to listen.

This is how you can help.

I mean, really...let's not make me be the soul
entertainer this week.
I'm quite boring really.

Okay,
wish him luck.
Praying....praying....praying for a miracle.

Monday, March 12, 2012

Harder.

I don't wanna be a downer.
But this is hard.
Travis fakes that he is doing ok pretty well.
He looks healthy.
He smiles a lot.
And if you ask how he is feeling,
he will flat out lie to you.

He is not doing ok.
He is in an awful lot of pain.

If he is finally able to sleep,
he groans cause it hurts.
Or he wakes up drenched in sweat,
but mostly he just lays there trying
to get comfortable.
I'm not sure when his
last night of decent sleep was.

For some reason the past few
weeks things have gotten harder
and harder.
Besides the rib pain,
his chest and back hurt quite a bit.
And he has absolutely no appetite.
Eating is hard for him.

Finding the balance of trying to keep
things normal is getting harder.
Trying to be happy in front of the girls
is getting harder.

Life in general is
getting harder.

I'm so bummed that
the pain shots he had a few
weeks ago did nothing for him.
It hurts my heart to see him in pain.

He spoke to the Dr. in Salt Lake who
will start his treatments next week
and she has requested that he go get
another chest x-ray to see what the
heck is going on in there....
So he's getting that done today
and I'm hoping there will be an
answer to what we do next.

I hate the thought of him
starting IL-2 feeling this awful,
because let's face it...
it's just gonna get worse next week.

I've known for years that there
would come a day when we'd have to
really face this,
instead of skirt around it,
but never knew how awful it would be.

Please pray that the IL-2 works for him.
Please pray that he finds some comfort.
Please pray that the Doctors can figure out how to help him.
And pray that our cute little ladies will feel like life is good...

And pray that I don't lose my mind too, if you'd like.
We continue to appreciate all that is done for us,
even if this post sounds a bit whiny!
We don't take any of it for granted.

Friday, March 9, 2012

Disney recap, A Delay, and Many Thanks

DISNEY RECAP
(I'll update the family blog with the whole trip in a day or two!)

We are home from our little family vacation.
The weather was lovely.
The girls were too.

But it was a rough week.

I failed to mention in my last post
that Trav's rib pain is back.
He went in the week before we left
and got 2 more shots,
and they didn't do a thing for him.

That made the 12+ hour drive
and the walking miles on asphalt all day at Disney
pretty miserable for Travis.

Man, it's hard to swallow it all sometimes.
We wanted a week.
Just one lovely pain free week!
For the love!

It's a pretty constant pain,
but then at times it's REALLY intense.
Like he'd be doing ok, not great, but ok...
and then I'd look over and he would get this
awful look on his face and you could tell
even breathing was hard.

And then I'd say,
"you ok?"

Oh man,
poor Trav was so sick of me asking
"you ok?"
by the end of the trip!

We just slowed down a lot
and did our best to make sure the
ladies loved every second.

Trav's a good dad.

I know it was rough on him
but he made the best of it and
faked that he was ok.
Have I mentioned how much
I adore that husband of mine?

I don't want to sound like I'm
complaining, because we were still
in 85 degree weather and in
DISNEYLAND!
So of course, we had a great time
and we are so grateful to have been able to
spend a whole week together as a family.
And there were many fun filled moments.

A DELAY


Anyhow,
While we were there the Dr. called and told
us they have to reschedule our start for IL-2
and push us back another week.

We are annoyed.
And bummed.

Trav is so ready to start.
Ready to try and attack the
stuff that is making his life miserable.

I had notes to teachers,
carpools figured out.
Babysitters for the week all scheduled.

And now we have to redo all that.
So I have a week to regroup before we head
to Salt Lake and begin.

We will be ready.
And I will be sure to update as often as I can when we start.
Keep praying for Trav.
His poor body needs some relief.

THANK YOU!


I can't end this post on such a bad note.
I cannot say how incredibly overwhelmed with love
we both have been over the past few weeks.
Sunday, as we drove through the desert
I had about a million texts from friends, ward members,
and loved ones who were fasting for our family.
It brought me to tears.

We are so incredibly thankful for the
donations people have made, dinners that have
been brought, offers to babysit, prayers on our behalf,
cards in the mail, texts, comments, and e-mails.

I hope you all know how grateful we are.
It's just overwhelming.
We feel very-very blessed.

I'll update soon.
Thank you all for checking in.


Thursday, March 1, 2012

2 weeks....

Today was a VERY long day
and the last big prep day
before our trip to the
happiest place on Earth...
and then our stint in
what I'm picturing to be
the
unhappiest place on Earth.

We stayed downtown in Salt Lake last night
because we had to be at Huntsman at 7:45 this morning.
We both loved that we got to drive right in the blizzard
on the trip down.

Here's our view from my icy windshield as we left for the hospital.

Our First stop was at Huntsman where they took
vitals, blood, and filled Trav with fluids to help
protect his kidney for the CT scan.
That took about an hour
leaving us with about 5 minutes to make
the 10 minute drive to the place where the CT scan was.

We then wasted an hour and a half exploring
the Cancer Institute. We figured we better get comfy
with that place! If your wondering,
I found my favorite nook
on the 6th floor and we both dozed there
for a minute.

Then T went to get an shot to prepare him for his bone scan.
Afterwards we had a few hours to waste till the actual scan.
We headed to Whole Foods to grab a small bite to eat
and had to laugh at how many people lunch their
with their MacBooks.
Like how we pretended I was taking a pic
of T so I could really capture the awesomeness of it all?

We still had quite a while to waste so Trav and I
browsed around Trolley Square and ran into this sign.
We went upstairs so we could see the movie scenes
playing out below and saw Tori Spelling filming a
Christmas movie.
I was pretty bummed they wouldn't let
me take a picture.
(I can freely admit my love of 90210 in my younger years.)Wow...I should really focus on the cancer stuff
on this blog cause I guess that's what your hear to read...

Back to it.
We went back and Trav got his Bone scan
and I spent an hour napping again on the 6th floor.
And then we headed to meet with our new Doctor
and get results and finalize our plans.

Usually when Trav gets a scan they compare them
to his previous scans to see if there has been any growth.
This time, they didn't do that.
They really just wanted a base line scan
to use to compare to his next scans after the first round of
IL-2. I was really worried about the scans this time
being that he hasn't had any treatments in 3 weeks.
I kept picturing the Dr. telling us that the cancer was
everywhere. I gave myself a good scare.

We read the scans though and it looks like things are fairly
similar to our last scans. There might be small changes but
nothing that jumped out at us and looked too worrisome.

Travis also went down a few weeks ago to get
some heart tests done and an infusion of
a bone strengthener.

The Dr. checked the scans from today
and tests from last week, labs, stats, and deemed him worthy
to begin everything on the 12th, though they were a little concerned
that Travs white count was high and they can't really see a reason for it,
they still think he will be fine to start.

So we are bracing and preparing for it all to begin.
And man, it's scary!

Our beautiful and amazing ward family
is fasting for us this Sunday.
Words cannot express our gratitude
to our ward for the support they've given
us over the past few years.
They bring dinner more often then we deserve.
They shovel sidewalks, mow lawns.
They help me out whenever I'm in need,
and always give Trav encouraging words.

We are so grateful to be near them,
and so grateful for all they do for us.

Many of you have asked how you can help,
and we'd love to have you join the fast if you'd like.
And feel free to pray.

Also, if your child is a friend
of our little ladies, we'd sure appreciate it
if you wouldn't let them know how really
scary this treatment is. We've told our kids
he wont feel great, and that we will be
away for a while each time,
but feel they don't really need to spend
the weeks in total fear.
It's a big enough change as it is.
They hear a lot from their friends who've had
relatives battle cancer and it really worries them
at times.
We are so grateful to their friends and
their parents for treating our kids like their own.

Trav is able to have visitors during the
treatment weeks if he feels up to it.
If you want to come,
let us know.
I have a feeling we will
both really appreciate it during
the monotony of it all!

Thank you all in advance for helping us
make things run smoothly.
We've had to mix up carpools,
make people take days off of work,
make teachers aware of everything
and I realize that this affects so much more then
our little family.
Thanks to our families for being willing
to drop whatever they have to to help.
I have a feeling between my mom and
Trav's, the ladies wont want us to come home!
Thank you to everyone who has jumped in to help.

We are overwhelmed with love and kindness.
And nerves.
And terror.
(I kid.)
Not really, but kinda.

PS-You should go here and help if you can.
Adam was one of my dear friends in high school,
in fact-he took me driving before my own parents did. ;)
And he is a pretty amazing person, who married someone
who seems just beautiful and so strong to me.
And they are part of our ugly cancer club.
She is battling hers for the 3rd time and
is in need of a BMT.
And their story is lovely.
Make sure to watch the video
cause it's just beautiful.
They could use some good vibes and prayers headed their way.

PSS-Love to all.