Balloons!

The day after I wrote this post we woke up to this beautiful sight.

 (The view from my front door at 7:30 am)

 Balloons!

Everywhere!

 Hundreds of them.

Lees in Smithfield ran out of orange

and started using yellow.

And Lees in Logan was bought out too.

(and more were added throughout the day)

They were brought with the message that we can feel lifted up.

And we did.

I mentioned that that night was extremely tough on our kids.

Waking up to this sight meant the world to them.

It made them remember that we have so many special 

people taking care of us.

And that, yes, life can feel hard,

but we aren't doing this alone.

This was done by friends,

sent by texts-to everyone and anyone who wanted to support us.

These dear friends-I know, had no idea how much this would mean to 

the little ladies.

Thank you for your love!

 We let them all go in the afternoon with lots of wishes floating up in the orange dotted sky.

 It was a beautiful sight!

A little update on  T and sutent.

This week was he did ok.

He had 4 shots Tuesday 

and  while the rib pain is 

still very present,

it's not as unbearable as before and 

he is able to log a few hours of sleep at a time,

where before he was waking up every 20 minutes in pain.

 

The stomach issues aren't fun for him.

He always feels pretty off,

and crappy,

but it's manageable.

 Each night he gets a heat rash that spreads

up from his chest to his face and makes him really hot.

Then cold,

Then hot again...

and cold again..

(How many of you just started singing katy perry lyrics?)

There are a few side effects I will spare details on,

for T's comfort and because ignorance is bliss...

but it's been ok.

Some days are really bad.

But for the most part he's managing.

We just cross our fingers for a good day each morning 

and see what happens.

It's like being on a roller coaster in the dark.

Except not fun, like Space mountain.

We feel loved and taken care of and are doing fine.

Thank you again for checking in!

 

Oh boy.

Sutent is gonna be fun!

(Dripping with sarcasm).

Tonight I looked at T and said,

"How long have you been on Sutent now, 2 weeks?"

And he replied...

"1."

It feels more like 4.

Anyhow,

Here's how things are shaping up for us.

After a few days on Sutent the fevers 

started to slow, and for a few days

STOP.

No fevers?

No sweating them out for hours?

Heaven.

And his cough,

which has been really terrible,

has lessened quite a bit.

Not gone,

but gotten better!

And the nausea?

It's getting there.

Score 3 for Sutent.

 Right?

Then,

Wednesday night Trav woke with some serious

rib pain again.

Because his body is mean and can't let him 

feel good for even a second!

Ugh.

Tomorrow he will go meet the pain

specialist again to see if they can help him out.

He gets absolutely no sleep with this awful pain,

so the sooner he gets it fixed,

the better.

We were thinking that as soon as the rib

pain is gone, he might start to feel like himself again.

Until today.

I'm pretty sure the side effects decided to kick in today.

He's felt awful.

All day long.

 His skin is yellowing a bit,

which I believe is normal.

And he got one heck of a fever today.

We know that they are coming,

but I have a pretty yucky feeling that

they are gonna be mean side effects.

And I  feel bad that my poor T hasn't felt

remotely decent in like 4 months.

(Ok, 4 years really, but even worse lately.)

I think him not sleeping isn't helping so I'm really 

crossing my fingers for the injection to help tomorrow.

Tonight I'm missing my husband.

I know he's here,

and we are so blessed that he is still here...

but he's miserable.

And he's not really himself.

 I'm just praying that these

side effects wont be too hard on him 

and once his rib pain is better he will

be able to find some energy,

and feel normal again.

There is a silver lining though.

 I mentioned that his cough was really bad before,

and it get a little better just before the rib pain began again.

And his 'morning sickness' has been a  lot better too.

I can't imagine how incredibly painful

it would be for him to cough that hard,

and be that sick with that pain.

Right now with his cough being as minor

as it is, it's still pretty painful.

We are both grateful for that.

And grateful for  the moments of normalcy we

are having.

 Even though this post sounds like it's all awful,

we have some really wonderful, happy moments

where life feels normal again.

I truly believe we will get there.

I think it will take some time to get used to 

these side effects,

but like his last drug,

his body will adjust.

I think we just have to be patient.

We are both working on it.

Thank, as always for the many people here cheering us on.

We sure love you!

 

 

 

{Another new Chapter}

(This post is long winded. Forgive me?)

Scan days.

I can't tell you how much we hate them.

For a good solid 2 weeks beforehand I 

picture the Dr. coming in giving us either the

best, or the worst possible situation.

 And we lose sleep.

And sanity.

Today was the dreaded day.

 We had scans at  12:30 and had

an appointment to meet with the Dr.

at 3:00.

And we sat in his office till 4:30,

and then he finally showed up.

Here's the gist.

He's not responding to IL-2.

There was a little growth everywhere,

and a few small new tumors in his kidney.

We knew it was a small chance.

We knew.

But man, having hope made us really want it.

 This was our only shot at a cure.

And I had us sitting on a beach 10 years from 

now saying things like,

'Remember when you had cancer?'

But, that's not in the cards.

But we have options.

And our Dr. was unusually optimistic about them.

He has recommended a drug called Sutent,

and we've read a bit about it in the past.

For some, 

this is the miracle drug.

The drug that gives them more time.

And he really feels like because of Trav's

age, and otherwise healthy body,

this could really work for him.

Sutent has been used by many in the RCC world,

and it seems for some the  side effects are murder,

and for others,

they are manageable.

The Dr. seemed to think for Travis they would

be manageable.

We are crossing fingers.

And all crossable body parts.

And Sutent is pricy!

We were told today that it would cost $3600

each month, AFTER INSURANCE.

BUT, the Dr. is already working quickly to 

figure out some financial aides for us,

and we are looking into a few options.

I feel like those who threw the beautiful fundraiser

together for us, were very inspired.

Please know, from the bottom of our hearts,

we are grateful.  Truly.

Today we were very grateful for our Doctors.

I'll be honest,

we had a hard time getting used to our new Doctor

at Huntsman.  We adore our Doctor here in Logan,

and still feel that he really knows, and wants the best for 

Travis.

And we didn't feel that at first with our Doctor in Salt Lake.

But today his optimism was so helpful.

And he was so kind.

He mentioned that he has about 20 people with RCC

and out of the 20, he wanted so badly for the IL2 to work

for Travis,  because of his young age and hot wife..

(ok, he didn't say that, but I'm trying to keep you awake.)

(I think he just really likes Travis, because what's not  to like?)

He said "If only he could handpick how it worked'.

He was so dissapointed that it didn't end that way.

And he was so optimistic that Sutent would be a good fit for T.

He said for some lucky people Sutent has worked for up to 5 years.

And while he can't even suggest a timeline for us,

because Cancer has a mind of it's own,

he's very hopeful that it will buy us some time,

and hopefully there will be a promising clinical

trial when Sutent does fail.

And then the Nurse practitioner who is really

in charge of us during our IL-2 doses and the

weeks we spent in the ICU came to visit for a minute.

This woman is a Saint.

She is the boss during those weeks and says who

gets doses and when.  They call her at all 

hours of the night, and I imagine she lives on no sleep.

She quite literally was our life saver while we were there

and we adore her.

Today she just hugged us both,

and with tears in her eyes told me 

how heartbroken she was that the IL-2 failed.
She also said that even though his
scans showed growth, she knows
that he will still have some beneficial
affects from the IL-2.
She feels like it will kick his immune
into overdrive and jumpstart the new chemo.
And she really feels like people with Il-2
in their system just plain live longer.
It wasn't 2 weeks wasted.

We felt so loved by both of them 

and it makes a big difference.

Instead of leaving heartbroken today,

we felt very optimistic.

We have an option,

and are praying,

really-really

really

hard that it's a good one.

We started taking the Sutent today

and will get a scan in 3 months to see how it goes.

If the financial aide works out we are hoping

that they can find a way to get it done in Logan

so we wont have to drive to Salt Lake so often.

If we have to, 

we will...but we are hoping it wont come to that.

His last drug he was on really kept

a lot of the Cancer side effects at bay.

The night sweats stopped,

and the cough,

and the nausea.

and the exhaustion.

They have really been plaguing Travis since he's 

stopped taking the Torisel.

It's been rough.

We are crossing our fingers that this new

drug will start to keep them at bay again,

and he will start to feel himself again.

That would be heaven!

We still feel really optimistic,

really ready for change.

It's been a tough few weeks.

And we feel really worried about

our lovely ladies.

Every now and then we realize 

how much we've focused on what's it's doing to us.

It's making Trav sick and tired,

and turning me into grumpy super mom.

And we feel sorry for ourselves and

We fail to notice the worry

our lovely daughters are feeling,

and tonight it became very apparent.

They've been praying for the cure.

And praying for a 'normal' life.

They don't understand why

they are the only ones with problems.

We tried to explain that each of their

friends have problems too,

and life isn't easy for anyone.

But they are 6 and 8,

and it just doesn't feel like that to them.

We've tried to explain how lucky we are to have such a 

happy family, but they were feeling pretty bad

tonight.  

Man, it's tough.

So selfishly, 

as usual!

We are asking for prayers that this drug to make

Trav feel like himself again.

Prayers for our girls.

We've told them instead of praying for a cure,

we should pray for patience.

And for happiness.

And for normalcy.

And for us to understand that 

our Father in Heaven has a plan for us.

Even if it's not the one we want.

We continue to feel so loved.

And so grateful.

xoxo

We are Travstrong.

I've  been sitting here for over an hour trying to figure out how 

to start this post.

I just can't find the words.

Nothing seems good enough to express our gratitude.

And the words to explain how loved we felt that night are inadequate.

The idea for a fundraiser was sent to us while we were in Salt Lake.

One of the kindest, most thoughtful people I know sent out a mass e-mail

to all of our friends saying,

'We are doing this.  Who wants to help.'

In her excitement, 

she sent the e-mail to me to.

And I quickly replied,

"NO!  Please don't go to all this trouble.

We are fine, we will make do.'

And then rigors started

and I didn't think much about it.

Next thing I know,

there is a date sent.

And posters.

And a website.

And a million and one volunteers.

And already we were in awe.

These neighbors and friends put

SO MUCH

time and effort,

and love,

into this fundraiser.

They spent hours meeting together,

collecting donations,

organizing every single detail.

And we didn't do a single thing to help.

And I still maintain that we don't deserve all this love.

We spotted our faces on posters all over town.

And we made it in the papers,

on the radio,

and pretty much everywhere went.

They plastered the entire valley.

 The night before the fundraiser I didn't sleep.

A wink.

I was so nervous that no one would come.

(And I must clarify, I wasn't worried about us not raising money,

I was worried that our friends who had spent weeks planning,

would have done all of that for nothing.)

The fundraiser started at 4.

And we got there at 2:30 and there were already people there.

And they kept coming!

Strangers.

Lots of kind strangers.

And friends.

So many friends, old and new.

And neighbors.

So many neighbors.

And co-workers.

So many.

And family.

So much family!

It was like a double family reunion, double work party,

double high school reunion,

ward party,

and it was fun!

It was so much fun.

I can't explain how hard it is to be the family

on the poster.

For the past 5 years we have been the cancer family,

but only people who really knew us, knew of our situation.

But now, all of my children's classmates know.

And old friends who had no idea,

now know.

And to random strangers-I am the wife on the poster.

And at first that was very hard to swallow.

But then!

Then we looked around at all of the support we have.

And were. Still are.

OVERWHELMED with love.

overwhelmed with support.

The night for us was not about raising money to help

pay our medical bills,

(Though we are incredibly-incredibly grateful and touched

by the generosity shown to us.  I can't even express how

loved we feel.)

But the night was about how supported we are.

It's been tough, the last few month.

And I know at times we make light of it on the blog,

but it's been harder then I can express.

And at times it just presses down on us

and makes life feel very hard.

That night, every time I turned around I saw love and support

and that was what the night was for us.

It was all about Travis seeing the

mountain of support we have.  He has.

And the army of people, really good people,

we have praying for us.

Thank you to our beautiful friends for 

putting this together for us.

 Thank you seems like such a small thing to say,

for something that was so HUGE,

but know that it is said with the 

humblest of hearts, and it is very sincere.

We love you.

We appreciate you.

And appreciate every single act of service you gave to us 

to make it such a successful and beautiful night.

Thank you to those who came to support us.

To the strangers who came just to run,

because they hate cancer too-

all the way to our closest family members.

 We wont soon forget all those who were there.

Thank you to everyone who donated money

on our behalf.

We feel so blessed and our hearts are so touched.

I wish I could write thank you cards to 

every single one of you.

On top of constantly worrying about cancer,

we've spent the past 5 years paying a hefty amount of

medical bills, and Travis has spent so much time working

while feeling sick to pay them.

 Know that this will help.

So much.  And will not be taken for granted.

And this doesn't seem like enough to make it 

clear how loved and blessed we feel,

but trust me.

We are so grateful.

Someday,

someday-we will be a cancer free family.

And life will be normal again.

Know that because of the kindness we've been shown,

not just Saturday, but all during our journey has forever changed us.

 We will do our best to be more giving.

And be more aware of others needs.

And less selfish.

 And we will spend our lives 

trying to pay others back for the goodness done to us.

Now: some photos!

(My camera died on the first picture I took that night.

Thank you to my fabulous friend Eileen for hooking me up 

with such great pictures!)

This one was taken by my friend Trisha.

We have oodles of bracelets left if anyone wants one, let me know!

I love seeing so many people with their Travstrongs on!

Our family.

We love the shirts.

They say 'survivoring' on the front.

That came from this night 3 years ago.

I've thought about that made up word a lot since then.

In my made up dictionary it would read,

Survivoring; the act of wanting to be a survivor.

We just aren't quite there yet.

Working on it.

Kidman clan

Johnson Clan

We are Travstrong.

The race was first and there was a lot of lovely people there.

When it began and we saw the mountain of people heading up

the canyon, I couldn't keep the tears in.

It was a beautiful, beautiful sight.

Heather Housley,

dear friend and race organizer.

Love her!

Best friends.

My sister, mom, and SIL.

Can't imagine life without them.

My love.

Oh I really, really love him.

Really.

Members of my family who walked.

And Tana, you count as family!

Good friend Hanne and Adyson's bff Lexi finishing the run.

Our kids during the raffle.

They had so much fun!

A few friendly faces and people we adore.

Have I said thank you yet?

Have I mentioned how special the night was?

I can't stop thinking about it.

It was beautiful.

Love to all!

PS-Trav's scan is set for May 10th.  Next Thursday.

We are scared.

It goes like this,

if there is no growth, or any shrinkage we go back.

If there is growth,

we try something new.

And something yucky.

And I have to tell you that our options are

running low.

So let's just keep praying for good scans..mmmkay?

{Another week later}

Again,

we've been home for a week

from our 'vacation' to Huntsman.

We are fans of home.

It's wonderful to be here!

Many of you have sent e-mails wondering

how Travis is feeling.

He's doing OK.

Still battling the raging

fever that wont die.

 And his mornings are rough.

He's battling quite

the case of the 'morning sickness'.

 And his energy isn't all back yet...

but he's getting there.

Each day he goes to work a little earlier.

And I think each night he has a little more energy.

And I really feel like with another week he will

start feeling a bit more like himself again.

Scans are set for May 10th.

And I don't want to even think about it yet.

It's scary.

We are praying for some good changes in the scan.

Cause good changes means 2 more weeks of

living the dream life at Huntsman.

(How sad that we are praying for 2 more weeks of hell!)

If the changes aren't good,

then we choose a different route.

So keep your fingers crossed.

And any other crossable body parts.

We are Eternally grateful to everyone for their kindness to us.

I may never catch up on Thank you cards.

Our dear, dear friends have put this together for our family.

We have no words to express how awed we are

for all the hard work they've done for us

and the hours they've put in to make it a special day for us.

It's a weird feeling to see your family on one of these posters,

and we'd trade it if we could...

with that being said, I'm fairly certain we

were given this challenge because we have the support system

to help us deal with all that comes along with it.

We are so very-very humbled, grateful, thankful, and blessed.

 

{IL2-Round 1-Part 2}

We made it yet another week!
And we are happy, happy, happy! to be home.

I cannot even write down how full
of fear I was for last week to come.
It was
just.
so.
hard.
the first time.

I am very happy to report that
our experience this time was better.

When we went for Round 1-Part 1,
Travis was feeling so sick to begin with.
I think we both would freely admit that
those couple of weeks were the hardest
we've encountered in our long cancer journey.
(And that is saying something.:)

He went into last week with more energy.
His rib pain feels better. Still not 100%,
but so much better.
And he's figured out how to manage
his fevers better and get a little more sleep.

When we checked in on Monday
they put in his PICC line and our
wonderful Doctor who is really
in charge of every decision made
for us over the week came in to see us.

She looked right at Travis and said
"You look so good."
And then she admitted she was
VERY reluctant to try again with his IL-2.
She said she was full of nerves about how
his body would react again and pretty leary to dose
him. But after seeing him she changed her mind.

And when we met with our other Dr. there
who is the RCC specialist, he walked in
and said,
"Wow, you look so much better!"

Which makes me wonder how sick he
really must have looked to them before?

Travis,
My rock star of a husband,
got 5 doses in.
5!
That was the goal.

(You may not care about details, but they are listed below
for our own good. Feel free to skip.)

Dose 1-no side effects.
Dose 2-rigor for 25 minutes.
Afterwards had very low blood pressure
and the medicine they gave him made him pretty sick...
They waited till about 10 in the morning for,
Dose 3-We learned with this dose that he
back spasms just before he rigors and they
had a hard time getting his pain under control.
He rigored for about 45 minutes and they gave
him...a lot. of drugs.
Dose 4-His first night dose of the week.
And it was the roughest for sure.
His back pain was just unbearable and he rigored
for over an hour. His heart rate got up to 199
for a minute, and was up to 180 for at least an hour.
It took a long time for his body to calm down.
But by the next afternoon they felt ready to dose again.
Dose 5-About 30 minutes before the rigors usually start
his back spasms began, and they were worse
then ever before. They gave him a lot of meds
to get him to calm down, and by the time
the rigors really hit, he was almost asleep.
He felt them, but they weren't as strong or painful
as usual. And after and hour they were through.

I'm hoping next time we go they can remember
dose 5 and try to figure things out before
the rigors start so they aren't so violent.
After each dose his blood pressure was
really, really low and they had to give him some really
strong blood pressure meds-but everything
else was looking good till dose 5.
And then the liver decided no more.(Picture above is his tree sometime after dose 3...
these are just the bags. Besides all of this he got 2 bags
of fresh blood, a heprin shot in his belly every 12 hours,
pills every few hours-plenty of them, and when they give him
pain meds during the rigors they shoot them right in his PICC.
And I counted, during 1 rigor spell he got 8).
Wow.


He just did so well.
I'm so proud of my husband.
He is strong.
And awesome.
And I'm lucky to be his wife.

The RCC Specialist during part 1
was pretty pessimistic about this working for Travis.
He really didn't give us much hope and
we both came home from the week from hell,
feeling like it may not have been worth it at all.
When we left he basically was saying
IL-2 Was too toxic for T and he was coming up with plan C.

And while he still isn't 100% convinced it will work,
he was SO much more optimistic.
He was SO happy with Trav's rigoring,
(means it's working.)
And his fevering.
(Another good sign.)
And just overall with the way
the week went.

And the other Dr. who takes care
of us for the week was really, really pleased
with how things went.

We go back in a few week for scans.
I'm already nervous.
I've never,
ever,
ever,
in my life wanting something
as much as I want good scan results.
(Good results meaning, a little shrinkage.)
If they are good we do another round.

If not-we go to plan c.
And we don't want it.
We want a cure.

We are home.
Trav's feeling ok.
Tired, but ok.
And we are feeling so
grateful that this week
wasn't as awful as the last one.

Yes, it was still awful,
but in comparison...
it was doable.

We continue to feel so loved and blessed
and know we have it good.

Thank you all for all you do for us.
We love you all.

Here. We. Go. Again.

My.My.My
how has it been 2 weeks already?

I'm sitting here full of dread
because we had to say goodbye to
those lovely ladies of ours tonight,
so we can head back down to Huntsman
for a week tomorrow.

We hate saying goodbye to those girls!
Have you seen them?
They are adorable.
And they hug real good.
And they smile a lot.

And we miss them already.

And...
did you read our post about our first week
at Huntsman?
Yes?
Well then you understand
why the stomach full of dread.

Alas,
it's happening.
And we can't do anything about it.

We are praying.
Hard.
That this week is better then our last
experience and just praying for it to FLY by!

We cannot express our gratitude for
how taken care of we are.
I write that every time,
but it always astounds us,
and it's never ending.

I cannot keep up on the thank you cards.
We hope you know how deep our gratitude goes.

Wish us luck!
Love to all.