Tuesday, February 7, 2012

Next Chapter

Today we made the trip to Hunstman
to meet our new Dr. and discuss our next step
for Trav's treatment.

We weren't really sure what to expect,
but both kind of assumed we'd come
home with options and lots to think of.

It didn't really go that way.

Instead
we came home with a plan.

But as I sit here trying to recap the day
it's all a blur.
We were there for 3 hours
and met with 3 different people.
Ran some blood work,
scheduled a whole lot of tests in the next few weeks,
and have been trying to let everything sink
in all afternoon, so forgive me if this post
is a complete incoherent mess.
I'm tired.

The Dr. told us a few stats first.
1-A good chunk of RCC patients cannot take this drug.
Trav can because he is young,
has the correct type of RCC,
and is in really good health (you know, other then the cancer.)

2-47% of the people who can take IL-2 have some sort of
response, meaning shrinkage or the very rare few who have their
cancer disappear.
But remember, that's very-very rare.

3-Because of the drug Trav's been taking for the past 4 years,
the odds of IL-2 working for him go down.
They work completely differently and he has
absolutely NO idea if the IL-2 will respond after Torisel.
Trav will be the first person to try it out in that order.
He said he normally wouldn't even suggest it,
but feels like it's worth a shot because of T's age and health.
He then said that he wants Trav to stop taking Torisel, right now.
So for the next 4 weeks it will get out of his system.
I totally get where he is coming from,
but am highly afraid of the cancer having a field day for
the next 4 weeks with no treatments to stop it.
But-I have complete trust in the Dr and if he says it's ok...
I guess it is.
Right?
Reassure me, someone.

After that, we both felt a little deflated
until he said it's basically your best, and only shot
at getting rid of the cancer.
It's a small chance, but it's a chance and that's something.
His words: "Your young, you have to try to get rid of it if you can."

And that pretty much sealed the deal.

Minutes later we were meeting with a lovely Dr.
who actually is there while administering the drug
and would pretty much be with us through it all.
I liked her. She put me at ease.

So here's the plan so far-
We go in 2 weeks Trav to run some tests- (heart, stress)-
and he will get a dose of a drug called Zometa to help
strengthen his bones.

Then on the 1st of March he will go in for a
Scan, Bone Scan, and we will meet the Dr. with the
results to make sure his body is capable for the drugs.

Then...March 4th....we head to Disneyland.
Yep, you read right,
Disneyland.
We had booked a trip just before all
of this crap started, and the Dr. feels completely
okay with us going...so we're going.
Feeling slightly guilty about spending the money,
but so excited for a week together,
just the four of us.

And we are gonna need it because
2 days after we get home
we will head to Salt Lake to begin treatments.

It goes a little something like this:
They admit him in the ICU and insert a picc line.
And then they start administering the first dose of IL-2.

It's basically like giving him the superflu.
He will have pretty bad convulsions, sweats,
fever, throw-up, diarrhea, and everything that comes
along with the flu.
But times 10.

They do a dose, and monitor him the whole time
and check his stats after each dose.
If his body is up for it,
they do another...and another...and another.
Ideally they will get up to 10, but some people quit
sooner. They just have to watch your body very closely.

They did make sure to let us know that
they've never had anyone at their hospital die
while administering it...
Comforting-huh.

After 5 days in the ICU he will come home
and recover for about a week,
and then go back and do it all over again.

After the second time he gets 6 weeks off
and then they do a scan to see if the drug is
having any effect. (Meaning shrinkage, or just stability).

If it is, we do it again.
And it's the same process.
We can do it up to 4 times.
And pray hard that Trav is one of
the few who has complete response.

Can you imagine?

How are we feeling you wonder?
Scared of what's to come.
A little sad that our way of life is changing a bit.
Sad that Torisel has quit working.
There's only so many options for us,
and now one of them is done.
Worried about work.
Worried about money.
Worried about our kids.
I'm worried about Travis.
About how he's gonna feel.
How I'm gonna be able to juggle him, the kids
and everything that comes along with it.

Oddly enough though,
With that huge list above,
I feel a little excited that maybe there is
a shot that something could help.
Feeling grateful that we have such
an amazing cancer institute so close
that is able to do the procedure
(there are only 35 in the US that can).
So grateful to have specialists looking
over his case, and qualified to do this with us.
We are gonna be praying hard around
these parts...
feel free to join in.

If you are still reading this,
you deserve a medal for making it
to the end of this ultra-long post.

Wish us luck!

30 comments:

Eileen said...

Wow. That's a lot of stuff. I'm so proud of you two. And I'm SO VERY glad you still get to go to the happiest place on earth!

Let us all know how we can help during the treatment [which doesn't sound fun at all], or any other time or anything else, or anyway at all!

You are loved!

And cancer still SUCKS!

The Wolfley Family said...

Oh, Hayley,what an emotional roller coaster! I can't even figure out what to think---except "holy crap" and I"m thinking that is really not enough!
I'm so glad you're going to Disneyland. I think it was an inspired decision. In the meantime, more prayers.
Love ya, sis!

Jenny said...

Huntsman Cancer Institute is an amazing, special, angelic place. I know the doctors and staff there will take good care of your entire family. Maybe in the long run, it's better to have a doctor tell you straight up the odds and what to do. What a crap load though! Know that everyone is thinking of you and wishing you the best. I know this is stupid to say, but seriously, if you need something when you are down here, let someone know!

Sophia said...

Hayley, as always, you amaze me, my friend. You are continually in our prayers. So far, you've done pretty well at beating the odds! I'm praying that Travis continues to do so! I have an old Bunco prize downstairs that says "Expect Miracles" and that is what we continually do in your behalf. Love you. So much.

Sophia

The Fluckiger Family said...

I am exhausted reading about your day and all that you are processing right now. I am SOOO glad you are going to Disneyland when you are, and I agree with Heather that it was inspired :) We will be praying harder for all of you. I love you all and I am excited to see you tomorrow night!

Kenzie Lawlor said...

prayers coming your way. PS you are a rockstar of a women. Seriously, with everything that has happened, you seem to keep your head up. You are someone we should all be looking up to.

PS: disneyland.. so jealous.

Amber Culp Family said...

I hope I can see through my tears to post a comment! I wish I lived closer to come hug you and take your girls and let them come play with mine!! You guys, of course, are always in our thoughts and prayers. We wish you the best of luck in the coming months. Love you lots!

Tana (Eliason) Draper said...

That brought me to tears... I will be praying for you, trav and your girls. My heart is hurting for you but at the same time I am sending good vibes your way babe!

Melissa Hernandez said...

That's a lot to take in just reading it, I can only imagine how overwhelmed you must feel. Hang in there-Heavenly Father is going to be with your family the entire way, it's amazing the comfort he can bring us during really challenging times! Hang in there! And, I will keep your family in my prayers!

Dani said...

WOW! I am so sorry that he is going to have to go through all that, but we will be praying that it is all worth it and the drug works. Always thinking of you guys!!!

Cindy said...

Hayley, I pray that this new treatment takes, and you are able to put this trial behind you. I've shared your blog on Facebook, and I know there are many who will be thinking of you in the next few weeks.

I don't know if you've heard, and I don't know if you'd even be able to come, but there is a mission reunion on March 30 in Springville UT. You can join the group on FB (Spain Madrid Mission Reunion 2012 - President Winkel). That's where I shared your blog information, as there are many people from the mission who Travis may know that I don't. All the best, Hayley.

Cindy (Ekins) Mason

Mary Kaye Olsen said...

I work at Icon and have met you a time or two. My heart goes out to your family! You are in my prayers and I so hope that this will be the miracle you guys have been fighting for.

The Drysdale's said...

Hayley ahhh this is so crazy what your family has to go through. I am so excited for you that there is an option that possible could cure Travis I say focus on that. Lean on EVERYONE and enjoy each minute. You are all an inspiration to me. Love ya!

Anonymous said...

There are no words for what we are all feeling right now. I have so much faith that this is going to work! You guys really have so many great people in your life and will have so much support and love and I feel so blessed that you have so many prayers being said for all of you! We will make it through this together...meaning we will help in everyway. I love all four of you so much! Mom

syndee said...

WOWZA GUYS! I wish you lots of good luck. If you need something please let us help you. The girls would love playing with your little beauties!

Trisha said...

I feel so emotional about this, but I am left with a pure, comforting HOPE. I love you so so so so much and am praying that the burden can be lightened during this time!

Anonymous said...

My prayers and love go out to all of your family. I truly believe that angels will be near to assist. I love you all! Tami

Anonymous said...

Hayley, I love you all and as always want you to that my prayers are there for you everyday. I truly believe that angels will be there to assist in ways we cannot imagine. Your strength is nothing short of amazing!! Luv Ya, Tami

Hiatts said...

Wow! Thoughts and prayers for your whole family! Lots of love coming your way.

Kristin said...

Haley ... my heart is breaking and hopeful all at the same time. I am so sorry you guys have to go through this. You CAN do it. You are one of the strongest people I know. LOVES!!!!

Billye Sue said...

Well, I know who is at the top of my prayer list right now!! Hang in there, sweety. It's going to be alright.
We are going to Disneyland Feb. 24th and leaving March 4th, so we'll make sure all is spiffy for you! :)And don't feel guilty about going. YOU GUYS DESERVE IT!!! Love you!

sherisse said...

Wow. My prayers are with you Hayley. If you need anything I hope you will call me. I would love to help with anything you need. If you want to just complain about how life is not fair and really sucks sometimes, I can do that. Hopefully you can come to lunch on Friday, it would be great to see you.

Watkins said...

Sweet Hayley, You have such a heavy load to carry. I wish I could say something to make that load lighter. I hope that knowing there are so many who love you, care about you, and will do anything to help you, will comfort you as you carry this load. Our prayers and our love are with you.

Kylene said...

Praying for you and your family. I admire so much your courage and strength.

Tara said...

Hey Hayley and Travis, God be with you your family during this time. Put your trust in him. My prayers are with you! You both amaze me!!

Darin and Joanna said...

Wow. That is a lot to swallow. My prayers are with you and your cute family! Hang in there!

Sue said...

Of course you know that Sue and i are pulling for ya trav. Hope this round of therapy does the trick....Your in our thoughts and prayers.

mstokes said...

How do you do it? Not quite your plan for your life, but you are making it... your making it through really hard things. We are sending all of the luck to your little family. You all deserve a miracle for Travis. Lots of Love sent from Hyde Park to Smithfield.
Keep being the STRONG woman that you are.

OtteBody said...

Hay, you know both of you are loved. Prayer is powerful. I've felt it and know you will, too. Hang in there. It's amazing the strength we find, when we're sure we can't get through.

Bre said...

I am so incredibly happy that you guys are going to Disneyland when you are! It was be just perfect for your beautiful family. I have faith for you friend, like lots and lots of it! I know you hear it all the time, but really if there is anything I can do I would love to help in anyway. I will be praying harder for your wonderful family.