Thursday, May 10, 2012

{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 
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,
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

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.


Haylee Munk Brown said...

I'm so sorry the IL-2 did not work, but of course you will be in my prayers that this new drug works. And I will definitely throw in extra prayers for the ladies. I know exactly how they feel :(

The Fluckiger Family said...

I am heartbroken for you and your sweet family and wishing I could do more than pray. Since that is the only thing I feel like I can do, I will be doing it x10. You are super parents(grump or not), and I look up to you both as examples. Love you so much friend, and forever praying for you all.

Hiatts said...

Love your family lots! Tons of prayers coming your way.

TEAM MASON said...

Well, there are no words I can say to fix this for you...oh how I wish that there were.

I am so glad that you have found a silver lining and that your time has not been wasted. I cannot even begin to imagine... You, Travis and your pretty ladies have a constant place in our prayers, and that will not change!!

All my love dear friend.

Brittney said...

Just when I think I can come leave you with some words of encouragement and love, I end up being the one encouraged. You're amazing Hay, really. Love you and always sending all the faith and hope I have.

Billye Sue said...

I was praying for a different blog, but as you said, Heavenly Father has a plan, and we just have to trust in that and not give up hope!

You and Travis are wonderful parents, and your girls are lucky to have you! One of the hugest things I have learned in this life is that the Savior's atonement heals ALL wounds. Your girls will heal, and learn, and grow, and be happy. How could they not be when you've taught them so beautifully? Much love to you!! :)

Amber Culp Family said...

Love you guys!! So inspired by how you are handling all this, you two are wonderful! Keep those spirits high. Give those girls loves for us.

Celestial Starr said...

Hayley, I'm SO sorry IL-2 didn't work like hoped. I think about you all the time and pray for you and your family daily. I hope that your whole family will be comforted at this time. Love you!!!

Sorensen Crew said...

I'm so sorry. Our prayers will continue for your family, especially your girls. You are an amazing family!

Trisha said...

My heart aches for you. You are in our prayers.

Miss Nelson said...

I'm heart broken that the IL-2 didn't work! Man, are you and your sweet family and inspiration to others, Hayley! I keep you all in my prayers each day. What an amazing daughter of God you are! I will especially pray for your sweet girls.

Superlace Mom said...

You are an amazing family! Sending love with all of our hearts!

Melissa Hernandez said...

I am praying that this other option will work for you guys, I am sooo sorry the IL-2 didn't give you the benefits you guys were really hoping for. My heartaches that you are having these talks with your girls..I can only imagine what they are thinking with everything that you have had to deal with lately. Seriously, send them to my house to play ANYTIME this summer, even if it's just to give u and Trav some alone time ;o) seriously!! Lots of prayers coming your way!! Luvs, Melissa