Monthly Archives: October 2013

In The Trial

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Trav made it into the trial!
YAY!!!!
Here he is with his meds… All in this little bag !!!

The CA19-9 marker is up quite a bit as expected.
The cancer has grown, BUT has not spread anywhere new and the lymphnodes look about the same as they did before his chemo break. The news is not amazing and it is not devastating. I call that a win in Cholangio World:)!

The doctors here are awesome and even though it is difficult to be here, we feel so blessed that we are. We are so grateful to our rockstar Dr Hamrick at Kaiser and to his team for fighting for us to get into this trial and for cheering us on along the way.

With that being said, we are so ready to go home to see our babies!!! Thank you all for the prayers and support. A big thank you to my mom and dad for keeping our oldest guy all week and to my angel cousin Ali who kept our two little ones. It’s an amazing relief when you know that your children are being loved and taken care of.

We feel like God has His hands on our journey and we are trusting Him all of the way. Our prayer now is that these trial drugs will attack the cancer in Travs body. That he will be able to handle these drugs as he did the others with little to no side effects. Also, that we know how to deal with any fear that is creeping into the minds of our older kiddos. This is uncharted territory so we pray that God leads us in our words and actions as parents.

We truly love those of you who are reading this and supporting us. God has shown us His love through all of you !!!

Carrie


Just Ask

Jaw clenched. Teeth grinding. The skin from his thumbs raw. Stomach in knots.

Nerves are taking over.

While Travis and Carrie always, deep down inside, experience the “peace that surpasses all understanding”… nerves can kick in. Taking over your mind. Taking of your thoughts. 

Robbing you of your peace. Even for just a moment.

 Nerves.

 Travis typically has nerves of steel. It is what makes him the successful business owner he is. It’s what helps him leap from a plane. It’s what gives him the desire to do it again.

 But now we are talking about the rest of his life…and how long that will be. Time with his wife. Time with his babies. 

Time

And suddenly those nerves of steel begin to…melt. 

Their appointment with Dr. Shroff is at 10:00 AM Eastern Time.  All will be known.

The trial approval.  The CT scan.  The bloodwork.  All will be revealed. 

But there are some things we just don’t know…can’t know.  Despite all they will learn today there is only One who knows the outcome  of all of this. 

And…to be honest…that messes with my nerves.   

I like to know everything.  I like to have all the facts.  All the details.  I like to plan.  Especially when it comes to the people I love.  And so, like you, this is unnerving for me, because I…WE…have no idea what is going to happen.  We don’t know the outcome.

But He does. 

And He is not struggling with nerves.  The One who gives a peace that surpasses all understanding to Carrie and Travis can do so because that is all He has…peace. No nerves.  Just peace.

And so my prayers today are for miraculous test results.  A dumbfounding CT scan.  Baffling bloodwork.  Thumbs up for the trial. 

But just as importantly…that He will grant His peace abundantly.

He has plenty to spare.  He is willing to give.

He wants to calm your…my….The Roberts’…nerves.

Just ask.


Fight

Finally.  The day has arrived.  The wait is over.

It’s time to fight.

Fight this cancer that has taken up residence in Travis’ body.

Travis and Carrie left for Houston on Wednesday.  A road trip.  Just the two of them.  No kids.  One purpose.

To fight Trav’s cancer. 

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They stopped in Biloxi for some fun and arrived in Houston Thursday night.

They were at MD Anderson at 9:45 yesterday morning.  Their appointment was scheduled for 10:00.  Timeliness is always important to Travis…especially when he is looking to fight.  But upon arrival they learned Travis’ CT Scan was moved from Tuesday morning to yesterday morning at 6:40 am.

However, someone forgot to let the patient know about the schedule change.

While the morning started out rocky, it didn’t deter them from their purpose.  Their purpose to fight.

And so, they had to squeeze in a CT scan.  It sounds easy but it is actually pretty complex.  Travis has to drink a contrast at different periods of the day and could not eat within 3 hours of the CT scan.  Only…they didn’t know when the CT scan was going to be.  Which simply meant he couldn’t eat until after the CT scan.  And the CT scan ended up being at 5:45 PM.

Nothing like kicking a guy when he is down.

Travis also had an echocardiogram, and his blood was drawn, but the results are not yet known. They will get their results on Wednesday when they meet with Dr. Shroff.    The blood work will tell them where the CA19-9 is after one month of no treatment and the CT Scan will show any tumor growth or spreading.

It doesn’t matter. Travis has resigned to the fact that the news could be bad.  It is what it is and now he is just ready for his new course of treatment to fight this.

The clinical trial is officially being conducted by Johns Hopkins and MD Anderson is sponsoring a “branch” of the trial.  Yesterday, Carrie and Travis got to meet with Dr. Zinner who is heading up the branch at MD Anderson.   While he cannot guarantee Travis’ participation in the trial (Johns Hopkins gets the final say) he sees no reason Travis would not be admitted.

The purpose of the trial is to test the maximum dosage tolerated of two combined drugs: Pazopanib and a MEK inhibitor which has not yet been named.  It is a directed therapy, meaning it will not kill everything in its path but, rather, will only attack what it should.  The Pazopanib should cut off the blood supply to the tumors. The MEK inhibitor should do just what it describes.  It will inhibit MEK from getting in the tumors.  MEK is a protein that cancer cells gobble up and thrive on.

Travis will have to take two pills every day.   Assuming he is approved to enter the trial he will start the pills on Wednesday.  After 15 days on the trial he will have blood drawn.  After 28 days he will return to MD Anderson for a day to meet with the trial doctor and, again, have blood drawn.  At that point, they will know the effect of these drugs on his tumors. They will know how well these drugs fight. After 56 days he will return for two days to get a CT scan, blood work, and again meet with the trial doctor.  And so will be the pattern for as long as these drugs continue to fight.

The potential side effects are numerous.  All of his hair could turn white.  He will likely develop a painful rash. Fatigue. Nausea. Swollen feet.  Food will no longer taste good.

Yuck.

But while the potential side effects…suck.  They are simply a price.  A price to pay in the fight.

Travis will have an opthalmology appointment on Monday afternoon and has the day “off” from MD Anderson on Tuesday.

Wednesday they will meet with Dr. Shroff and find out if Johns Hopkins has approved his entry in the trial.  They will also get the results of the blood work and CT scan.  And, assuming he is in the trial, he will take his first dose of the medications.

Wednesday is an important day.

Wednesday is a day to fight.


Tick Tock

Time is a funny thing.  It plays tricks on you.  When you want it to hurry up…it always drags.  When you want it to slow down…it seems to sprint.

It never seems to cooperate.

Tick Tock. Tick Tock. Tick Tock.

No matter how hard we try.  No matter how hard we wish.  We cannot speed it up or slow it down. It’s always constant.

Tick Tock. Tick Tock. Tick Tock.

There is a saying that goes “The days drag by but the years fly by.”  Nothing could be more true.

When you are waiting for the work day to end… A vacation to arrive… The treadmill to reach 30 minutes…

Time drags.

But when you are enjoying the weekend…  You’re finally on that dream vacation…  You’re walking down the aisle….

You blink.

And it’s over.

Tick Tock. Tick Tock. Tick Tock.

But what happens when you’re sick?  What happens when your time has been given…

a limit.

Suddenly.  Time matters so much more.

Tick Tock. Tick Tock. Tick Tock.

Every day Travis wakes up and faces the clock and wonders, “how much time do I have?”

On Wednesday, he received a call from a friend and when asked how he was he replied, “not good.”

“Why? What’s going on Trav?”

“Just writing birthday cards to my kids….”

As we wrote in Walking Two Lines, Travis hopes…believes in the miracle.  But as a leader he always covers his bases.

He always has a contingency plan.  That’s just how leaders operate.

And so he ensures his kids will have something from him on their special days.

Time doesn’t let us fast forward to allow Travis to know what he should write in Jake’s 16th birthday card.

To know what Trey will need to hear on his 21st birthday.

To give Piper advice on her wedding day regarding her soon to be husband. 

And so, he muddles through it.  Trying his hardest to ensure each card doesn’t sound the same as the last. Hoping he will read it with them on their special day and smile at his effort. And, of course, he always lets them know how much he loves them.

Up until the last few weeks there was no such thing as time going too slow for Travis.  When you don’t know how much time you have left you don’t seem to mind it going slow.

Ironically, none of us know how much time we have left. And yet we act as if we do.

Tick Tock. Tick Tock. Tick Tock.

But in the past two weeks there has been some anxiety over time.  Travis has wanted time to speed up…for the first time in five months.

Why?

Because Travis is a fighter.  And the fighter has been told he has to take a break from fighting…and wait.

Wait. And do nothing.

Travis does not “do nothing”.

He has a disease…taking advantage of this timeeating away at his liver and doing what it can in the time it has.

One month. No chemo.  No treatment.  No fight.

For someone like Travis, this can be maddening.

And he still has sixteen more days to go.

Carrie and Travis will head to MD Anderson on October 17th. He will have testing on Friday the 18th and Monday the 21st and, at that point, it will be determined officially  if he can be in the trial.  The tests will be overnighted to Johns Hopkins, who is heading the study, and then the trial will begin the 23rd.

The 23rd.  That’s 16 more days until he can begin fighting this disease again. With medicine.  That’s 35 days of no medical treatment.

Travis will take a pill every day as a part of the trial.  No IV.  No Port.  Thankfully, mercifully, just a pill.  Every month they will travel to MD Anderson for blood work and every other month Travis will get a CT scan at MD Anderson.  As long as the treatment is working.

Tick Tock. Tick Tock. Tick Tock.

No.  Time is not on Travis’ side right now.

But thankfully.

God is.

Thankfully, God is not constricted by the constraints of time. He is not controlled by time.  He created time.

And so, for the next 16 days, Travis cannot fight…with medicine.  But he can fight with something stronger.

Prayer. 

As the days drag on. As fears pop into his head about what the cancer is doing to his body. As time seems to stand still.

We can pray.

Pray that the cancer will not grow or spread.  Pray that God will provide miraculous healing.  Pray that the doctors will be bewildered.

Pray…for time.

Because, before we know it, October 23rd will be here.  Travis will start treatment.  And once again, staring at the clock, willing it to slow down.

And just give him more time.

Tick Tock. Tick Tock. Tick Tock.