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!
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!
