Monthly Archives: April 2014

An Open Letter

Dear Travis –

Well.  You made it.  While we are not at all surprised, some of us wonder if you are a tad bit?  After all, you asked several of us over the past year, “what’s the “over/under” on making it to 39?”

Just how many bets do you have to pay up on?

A year ago tonight you were sitting with family and friends as we celebrated your birthday.  There was nervous laughter, awkward moments of silence, and prayer.  We didn’t know yet.  We knew there was something but we were hoping, against all odds, it was just a random infection.  A benign tumor.  A fatty cyst.  Anything but…..cancer.

In less than 12 hours you would find out it was….

Since that day, that fateful day, we have watched you in admiration.  We have watched you grow, help others, love, learn, forgive, chase after Jesus…

We have watched you…change.

You have not walked this road perfectly but there is no expectation for perfection.  Only growth.  And we have seen plenty of that.

We have seen you grow in ways that have caused us to whisper behind your back, “did he just say that?”  “did he just do that?” “was that Travis?!?”  

You have shocked us. Inspired us. Taught us. And, of course, made us laugh…even in the most inappropriate of moments as only you can do.

Watching you over the past year has been a humbling experience.  It has inspired many of us to live. You have shown us how to love. And for many of us…because of you…we have found our way back to church. Back to God.

A friend, one of us, once said you were a “modern day Paul”.  As you sit at Buckhead Church on Sunday morning, taking up two rows with your “army”, that comment comes to life.  Leading others to Christ even as you wrestle with Him yourself.

And so, after a year of giving us so much, more than we could have ever asked, we have one more request.

Keep fighting.

A silly request, we know, because it’s asking you to do what you do.  What you have always done.  But still, we are asking you for it anyway because we want you to know how important it is…to us.

You have plenty of reasons to fight…

Your beautiful wife. Your high school sweetheart.  The girl who would be lost without you.

Your oldest boy.  Your clone. The mini Trav.  The boy who looks up to you like none other.  The one who adores you.

Your precious girl. Your angel. The one who wants your “chemo” to go away. The one who wants her daddy to walk her down the aisle some day.

Your baby.  The one who sings “The Daddy Song”. “The Daddy Song” that expresses how much he loves you already…at only 3 years old.

Amazing reasons to fight.

But we have one more.  Clearly not as an important as these others but worth mentioning nonetheless.

Fight for us.

We are not done learning. Our faith is not done being stretched by watching you walk this journey.  And the only way for faith to grow…is to be stretched.

There are so many more of us to reach. That only you, in your special way, can reach.

So when you are tired.  When you are understandably done with feeling sick…being poked, prodded, and cut open…and you are going through your list of reasons for fighting.  Think of us.

Because the world we live in needs a modern day Paul. The world needs you.

So with that…there is only one question left…

What’s the over/under on making it to 40?

We’ll take that bet.

Love,

#TravsArmy

 

 


What a Guy! What a Trial!

First, I have to report that Trav is doing fantastic. He is seriously amazing. He was released from ICU yesterday.

This morning when I was leaving my hotel and heading to the hospital I text him and asked if he needed anything.

He text back:
“Blue Gatorade”
And
“Parmesan cheese because when I can eat I want spaghetti”

Haha!

I thought, “well Trav… dream big.” I got the blue Gatorade and I did NOT get Parmesan. I knew that he would not be eating solids today because yesterday they would hardly let him drink water.

When I walked into his room the doctor was visiting with him. She said hello to me and then she said, “Travis is doing so great that Dr. Kamula (his surgeon) said that he can eat solids today. What???? Shoot, I didn’t get the parm:). No problem because he changed his mind and opted for French Toast. That’s a nice Easter Brunch! He ate while we watched Andy Stanley’s Easter service online.

I am amazed by this guy. After the service we did five laps around the halls. The doctors just came in to visit again and they are so pleased with his progress. He will get his epidural and catheter removed tomorrow. That will make him VERY happy:)!

So, it’s great news that this surgery went well and that he is recovering so quickly because we can’t get to step two of this trial without going through step one.

Even though this surgery seems like a giant hurdle it really is only the beginning.

I have learned so much this week and I find it completely fascinating. I’m going to explain a little bit about this trial in my total non scientific way.  If you are not interested in the process or the science then just skip to the bottom.  I will never know:)!

We all have T cells in our body and they work to fight anything and everything that goes wrong inside of us. If we have a cold or a fever or a tumor, our immune system kicks in and sends these T cells to the problem spot to fight the problem. They are like Super Heroes in our bodies.

Unfortunately, from time to time, these cells are not strong enough, big enough, powerful enough to beat whatever they are fighting. Boom, you have Cancer!

Well, just because the T cells can’t beat the cancer tumors doesn’t mean they don’t try. These little buggers are attaching themselves to Trav’s tumors and they are doing their best. Each of his tumors are covered in T Cells trying to fight a losing battle.

Every T cell is not the same. They can not all fight the same things. They each have their own Super Power. The Super Power is called a receptor. Each T Cell has a distinct receptor. That receptor has to link up perfectly with the problem cell in order to destroy it. The problem is that there are not enough of the T Cells with the matching receptor fighting Trav’s cancer which is why it is a losing battle.

That is the purpose of this trial. Find the matching receptor to Trav’s cancer, manufacture a ton of them, and inject them back into him.

We found out that the surgeon was able to get 4 tumors out of the 2 wedges that he removed. This is great in that we may have more T cells to work with to find the right receptor.

Trav’s immune system is very strong so even though his immune system does not have enough of the cells with the right Super Powers/receptor to stand up against these cancer cells we hope that there is at least one of the matching T Cell that has attached to Travs tumor that has the correct receptor to be able to kill his cancer cells.

The Cholangio patient who is having success with this trial right now had just the right T Cell attached to her tumor and it cooperated and multiplied in the lab. Therefore when they injected the cells into her during phase two of the trial she had plenty of the correct T Cells put back into her body. That meant her immune system had enough of the correct type of T Cell to kill the cancer cells and she saw great success.

The doctor explained that if they put a cancer cell and a T Cell with a matching receptor together in the lab it looks like lock and key. A perfect match. They join together and that T Cell is able to kill the bad cancer cell. Good beats Evil right there in the lab.

I wish they had the time to test every T cell from Trav against his cancer cells to see if they can find that perfect match. Then I wish that they could just grow the correct cells and blast his cancer.

But, there are thousands of different types of T Cells with their own receptor types on Trav’s tumors so they do not have the time in the lab to do the testing.

The only thing that they can do is FIRST hope that SOMETHING grows in the lab. The scientist actually has to just watch the T Cells for 5 days after surgery without even touching them in the labs before they can start manipulating them and encouraging them to multiply.

Once they have multiplied they will document which cells multiply and how much of each type that they put back into his body.

The process of putting the cells back in to the body by injection does not sound pleasant at all, but we will share more about that when it comes. Every month after the treatment Trav will come back for a CT scan. They wait 2 months to determine whether they think the process is working.

If it works and his cancer starts shrinking they will know that they found the right key. That means one of the cell types they injected him with is a perfect match for his cancer. From there they will start trying to figure out which T Cell had the correct super power. They do that in the labs here and they will also send Travs T Cells and tumor cells off for a special immune system genetic testing.

The scientists here at the NIH were able to figure out exactly which cell worked for our Cholangio friend who is on this trial now. She has gone through this process twice. The first time she had this process done they found the cell by luck. That perfect T Cell that would fight her cancer was on her tumor and it multiplied in the labs. Her cancer was shrinking or stable for about a year and a half. The second time they did the process, because of what they learned during her first treatment, they were able to target a specific T cell from her tumor and multiply that cell with the perfect receptor. The docs here flooded her body with that T Cell type.

She is doing gang busters now. In 6 months she has had more tumor shrinkage than she did in a year and a half with the first treatment. She is actually a bit of a celebrity:). Her case is being published and the cancer world is getting really excited.

Can you imagine if this hospital can have positive results with another Cholangio patient on this trial. We can see the excitement on the doctors faces.

Now you know why we need the cells to grow and more specifically the RIGHT cell to grow. NO PRESSURE!!!

It is very exciting to be in this trial but we realize that we are in at the very beginning. I can see that this process, once perfected, will be amazing. Right now it is a bit of a crap shoot with finding the perfect cell. We are praying continually that the key to Trav’s cancer is in the lab right now and that it will multiply.

Please join us in that prayer. We know that you will because #TravsArmy is amazing!!!

Love and Hugs,
Carrie


Good Friday

I heard a friend recently say that Easter is like the Superbowl for Christians.  Perfect comparison.  Christmas is fun.  Important.  But Easter….Easter is the foundation of our faith.  It’s what sets us apart from every other religion out there.  And you can’t have Easter without…Good Friday.

All morning #TravsArmy has been approaching God’s throne, in unison, asking God for His grace, mercy, provision, and healing.

Isn’t that what Good Friday is all about on a much larger scale?

This morning I thanked God.  I found comfort, not coincidence, that Travis’ surgery fell on Good Friday.  365 days in a year and his surgery landed on Good Friday.  A day that represents God’s love, grace, provision, mercy…and healing.

As Carrie reported last night, Travis hates needles.  He yells.  Literally. As they insert an IV, Travis yells at the top of his lungs and typically draws a crowd of nurses and doctors to see what is going on.

Leave it to Travis to pull some giggles and smiles in the bleakest of moments.

This surgery day began with the poking and prodding you would expect before a major surgery. Unfortunately, for Travis, the epidural gave them trouble and they had to do it multiple times.

Carrie was not allowed in there for the epidural but I would be willing to bet a crowd was drawn.

Carrie was able to see him after the epidural, before being brought back for surgery. He was in good spirits and, as always, brought smiles to faces.  He was brought back at 9:15 for surgery.

Around 11:00, Carrie got the call that he was doing well and they had about an hour of surgery left.  The family headed back to the waiting room.

Less than an hour later the doctor came out and said that Travis did great.  They were able to get both tumors they wanted without any issue and Travis would be headed to ICU soon.

When he woke up he was in severe pain but they were quick to give him what he needed to get him comfortable.  Carrie was able to see him and said he was very groggy but good.  As of 1:30 pm, he is resting comfortably.

The prayer now is that Travis will heal in record time from the surgery so they can get back to those babies.  That no infection or complications set in.  And, of course, that the surgeons got what they needed to create the cells to fight the cancer.

God knows how all this will turn out.  He has Travis in His hands and has had this path in His hands all year.   This year, He has given us two reasons to be grateful on this…

Good Friday.


Surgery Day

It’s after 12am so it is officially surgery day. I’m staying in the hospital room tonight because Travs nerves are on edge and he didn’t want me to go to my hotel.

We had a little bit of a teary day. It’s not easy being away from the “littles” and facing the procedures that Trav will be going through over the next few months.

A couple of great things happened today though. First, my dad and Trav’s dad and step mom came to be with us. It’s so nice to have them here. We all prayed over Travis tonight before they went to their hotel. Great to have family!

Secondly, we received so much attention from the doctors today. Multiple doctors spent large chunks of time with us. They explained so much and answered all of our questions. It was seriously impressive. This hospital is awesome. Not just the people but also the campus. It’s like a beautiful college campus.

Now to the facts. The surgery prep begins around 730 AM. Travis will need prayer during surgery prep because he is so over being poked and prodded (he hates needles). He will be getting MANY needle sticks tomorrow and one of the needle sticks will be his first epidural. Hopefully it won’t hurt because of local numbing, but it will totally “creep” him out:).

The surgery will start around 9 AM. It is estimated to last about 4 hours. The surgeons have studied his scans like crazy and they have changed their original plan for his surgery. They were going to take a large piece of his liver with at least one 2 inch tumor.

BUT, the head surgeon let us know today that Travs two big tumors are starting to cause some trouble for the right side of the liver. The big tumor is about the size of a soft ball now and then there is a slightly smaller one next to the big guy. They can not get to them because they are right on top of his portal vein and his hepatic artery. They are dangerously positioned.

Anyway, because the right side is starting to be compromised they don’t want to lop off a chunk of his liver and hope for the best. Luckily, he has 2 to 3 nice little tumors sitting right on the outside of his liver.

The surgeon said that those couple tumors will be staring at him when he cuts Trav open. He will cherry pick those tumors, removing only about 2% of his liver. He said that those tumors will be more than enough to grow cells from.

Pray for nerves, pray for a perfect surgery, pray that they open him up and the cancer is gone:), pray that he recovers in record time so we can get home to the littles.

Thank you all for being Travs Army.
Love and Hugs,
Carrie


Roller Coasters

If you know Travis you know that he is an adrenaline junkie.  He loves anything and everything that gets the heart racing…sky diving, driving fast, and of course, roller coasters.

On January 1, 2004 the GA Bulldogs played Purdue in the Capital One Bowl.  And, of course, Travis was there.  The Capital One Bowl is in Orlando so a trip to Disney and Universal Studios was inevitable.  While at Universal Studios, Travis came upon a roller coaster called The Dueling Dragons. Actually…two roller coasters. Two roller coasters built as one.  Two separate rides.  Two separate adrenaline rushes.  And…the best part? There was no line.

Travis was in heaven.

I believe Travis may have set the record for riding the Dueling Dragons the most consecutive number of times in a row that day.

Travis loves roller coasters.

But in the past year I would venture to guess that Travis’ love for roller coasters has weened. At least…the kind of roller coaster he has been on.

The emotional roller coaster.

For the past year Travis has gone up, and down, and up and down, and down, and down, and down, and down, and down….

For the past year, Travis has felt like he has been on the Kingda Ka, the longest roller coaster drop in the world, and there is no way off.

Today was no exception.

Travis checked into the NIH (National Institute for Health) at 8:15 AM.  He was placed in a room which he shares with another man riding a roller coaster. As expected, one of the first things the nurses did, was check Travis’ vitals.

Fever.

101 degrees.

When a child runs a101 degree fever there is little, if any, concern. They tolerate it so well…..bouncing off the walls and having a blast.  When an adult runs a 101 degree fever…it’s not quite the same.  We seem to handle it the same way we would if we were hit by a dump truck.

Now imagine if someone who has been battling a deadly cancer for the past year runs a 101 degree fever.

Panic can set in.  “What ifs” run rampant.  The roller coaster speeds up. 

But…as many of you know…Travis is anything but the “typical cancer patient”.

When asked by the nurse, he simply told her “I feel great.”

Despite the fever, Travis headed off for the brain scan and then his CT scan, his chest x ray and his EKG. He and Carrie met with multiple doctors and surgeons.

And then the news came.

We may have to send you home. 

There is that point on the  roller coaster, when your stomach feels like it is in your throat, when you have to fight it back down.  Carrie and Travis were in that moment.

Their stomachs in their throats.  Fighting it back down to brace for whatever was coming next. Just like the fastest of roller coasters.

Travis is sick.

An obvious statement, I know, but I am not referring to the cancer.  He has a cold.  Just like you, me and anyone else can get….Travis simply has a severe cold which has caused mucus in his lungs.

Funny how something so small and simple…something that “the healthy” deal with every year as a “small nuisance” can send someone on such a ride.

But a cold for Travis isn’t a simple nuisance.

Suregons don’t operate on those who are sick with an infection or fever.  They wait for healing because they need the body ready to fight and recover from the surgery. In Travis’ case, they need the body to focus on healing the liver.  Not fighting a cold.

We may have you go home and come back when your cold is gone.

More waiting.  More doing nothing as this cancer has its way in his body.  More goodbyes to endure with their precious children.  More tough questions to answer. More waiting.

This roller coaster is getting out of control.

The CT scan came back and showed that the cancer has not spread.  Additionally, while the cancer has grown, it has only grown slightly despite the lack of treatment.

At least the roller coaster slowed some as surgery was contemplated.

Luckily.  The ride slowed down even more. The surgical team decided that it was more risky to wait than it was to proceed while Travis is sick with a cold and fever.

And so the surgery is still scheduled for Friday.

An intense surgery. Travis will have a 6-8 inch incision and they will take out a section of his liver that has multiple tumors.  From there…they will try to grow the cells. The cells that will work to beat this cancer.

The chance of success?  Not great…

Travis and Carrie learned, that while the treatment is showing great success in melanoma, it has only been done on 14 gastrointestinal cancer patients.  It has worked on one.

One.

The roller coaster speeds up.

The good news? The “one” was a cholangiocarcinoma patient. The other patients had other GI cancers.

Will this surgery be a success on Friday? Will the cells grow? Will God intervene and provide a divine miracle or a medical miracle?

Only He knows.  I just pray that some day soon my friends’ emotional coaster will end. That healing will come and Travis will be able to enjoy something he has always loved….

A good old fashion…roller coaster. 

 

 

 


Road Trip to a Trial

149 miles left to DC. Soon we will reach our next destination on this cancer journey. This is a tough one. It’s tough because we have long periods of time that we have to be away from our kids. And it is tough because the procedures that Trav will be going through are serious and scary.

I keep thinking about the fact that Trav will be having a liver resection on Friday. That leads my thoughts to all of the doctors comments in the past year about why we should not do surgery. They have told us that surgeries lower the immune system and while the immune system is down the cancer could be going crazy. They have talked about something called seeding. Seeding means that when they pull the tumor out, microscopic bits of cancer sprinkle out and then seed themselves into other areas of the body. Hmmmm! No PLEASE!!!!

You see, it doesn’t matter what the risks are… This is what we have been given. We are grateful. The risks just give us more to pray about.

It was very hard to leave our sweet little ones. Trey (6), asked if these doctors have medicine that will make daddy better forever. Pippi (4), asked if mommy is taking daddy to a doctor that will make daddy’s chemo go away forever. (For some reason Pippi always talks about the chemo) We left them with only thoughts of hope and love. We talk openly with them, but we do not say things that cause unnecessary fear in their little hearts. Please pray for them while we are away. They are well cared for and loved.

Please pray for us while we are away. I bought Easter baskets and Easter outfits before we left, but will not be able to dress them or hide the baskets. Hurts the heart! Please kiss and hug my babies if you see them.

We check into the hospital tomorrow morning at 830. Trav will have 2 days of tests. Then the liver surgery is on Friday.

As I promised either Kristina or I will blog often. I want to have this process documented for y’all and for us!!!

Love and Hugs!
Carrie


Trial Schedule

Hello Friends! We are coming up on our 1 year anniversary with this cancer journey. Wow! In one year we have gone through any and all normal Cholangio treatments. We feel so blessed to have another option.

I want to update you, #TravsArmy, on what our schedule looks like for the upcoming trial.

First, I should tell you that Trav got into the trial that we were hoping for. That was such great news, and quite a relief. The doctors at the NIH also let us know that they are excited about the fact that he also fits the second trial. So… they have a back up if the first trial is not successful. Of course we hope and pray that the first trial will be successful. It’s just always nice to know that there’s something else.

We found out today that Trav is expected at the NIH on the 16th. He will be admitted into the hospital that day and will remain as a patient in their hospital until he has recovered from his surgery. The 16th and 17th will be full of tests and surgery prep appointments. His surgery will take place on the 18th. Today our research nurse told me that it could take 7-10 days for Trav to recover from the surgery well enough to go home. We will be praying for a quick recovery. We will both be so anxious to get home to our kids.

I am not sure when, but some time after the surgery we will find out if Travs tumor cells are re growing into the healthy T-cells that we desperately need. Hopefully they will. It will take about 3 wks for them to fully grow. Once the doctors say the cells are ready then Trav and I will head back to the NIH for the next part of the process.

Kristina (our blog writer) and I will do our best to keep you posted while Trav and I are at the National Institute of a Health. I will ask for specific prayer requests and update on Travs condition.

Again we love #TravsArmy and appreciate the support.

With Love,
Carrie


Coincidences

The day began with Travis and Carrie driving into the National Institute of Health.  As they drove up a song came on the radio…I Need a Miracle by Third Day.

Coincidence?

They were given official badges, their car was searched, they went through security. Needless to say…it took a lot to get in the building.

Ironicsince, after all…it took a lot to make it to that building.

Almost a year to be exact.

A year of heartache.  A year of prayers. A year of hope. A year of lessons.  A year of miracles.  

And here they were.

When this journey started, Travis told us he wanted the crazy stuff. He wanted them to throw everything at it.  Inject him with AIDS or whatever crazy trial was out there…he wanted it.  He was willing to risk everything because he knew everything was at risk.

And here he was.  A year later.  At the place he did not even know about a year before and yet had hoped for.

Coincidence?

The morning was filled with blood work, labs and XRays.  It was pretty routine.

The doctor’s visits came after lunch.

The doctor walked in the room and the first question out of his mouth was, “how do they even know you have Cholangiocarcinoma?”

Not because he thought it was something else.  Not because he had any scientific reason to think otherwise.  Simply because…Cholangiocarcinoma just does not make sense.

To live a year with Stage Four Cholangiocarcinoma, to grow 15 tumors on your liver, and to still be alive was pretty amazing.

But certainly not unheard of…

The unheard of part, dare I say miraculous part, is living a year with Stage Four Cholangiocarcinoma…growing fifteen tumors…and not having a single symptom. To have perfect blood work, liver levels, and white blood cell counts, one year in leads a doctor to wonder…are they sure it is Cholangiocarcinoma?

Coincidence?

The doctor moved on with a brief, yet impacting, statement…

You’re definitely in the trial…

Such a simple statement for a doctor to make, and yet, a statement that means so much to so many.

There are two studies Travis is eligible for.

The first, is the TIL trial.  It is the trial they originally learned about and the one they prefer.  The procedure is actually slightly different than what they originally thought.  They would first go out for a week or less. During this time the doctors would perform the surgery which they referred to as a liver resection.  The amount time spent would be determined by how soon Travis recovers from the surgery but anywhere from a few days to a week is normal.  At that point, they would come home for three weeks.  During this time they will grow the T-cells from his tumor cells.  But there is no guarantee the T-cells will grow.  For some they do and for others they don’t.

If they don’t grow…then he cannot be in the trial.

If they do grow, then after three weeks, they will head back. There will be a few days of tests and then Travis will be given chemo for ten days in the hospital.  The purpose is to bring his immune system down to nothing so that it will not reject the new blood cells.  Once his immune system is down then they will inject him with billions of healthy cells.  He will also receive a daily treatment to assist the cells in fighting the cancer.  The immune system slowly comes back up and, once it is at an acceptable level, he is able to go home.  How long he stays is determined by how soon his immune system comes back. He will return monthly for a scan to ensure it is still working.

The second trial is called Mage.  It is very similar to the first but there is no surgery.  It is done through a large blood draw.  There is a protein in Travis’ tumor called Mage.  They reengineer the blood cells to attack the Mage protein thus killing the cancer cells.  The downside to this trial is that it is in its infancy.  It has only been done on four people.  For whatever reason, unlike the previous trial, they cannot inject all of the cells.  They are still figuring out dosages for this trial.  Additionally, they only accept one person every other week and they are currently booked through May 8th.

Even with the best blood work…when you have Stage Four Cholangiocarcinoma….time is of the essence.

The hope and the prayer is that he will get into the first trial.

But what about the miracle?  The miracle we all prayed for?  The miracle the elders prayed for?

My grandmother has an old quote hanging on her refrigerator.

Coincidences are God’s way of remaining anonymous…

It was no coincidence that “I Need a Miracle” came on the radio as they pulled into the NIH.

It was no coincidence that Travis found himself at the NIH almost a year after saying he wanted the craziest, riskiest, “throw the book at it” trial out there.

As it turns out, there was no CT Scan today.  Only blood work and an Xray.  Carrie asked about the X-ray results two separate times but the doctor only replied that they had reviewed his scans from Kaiser.

In Carrie’s words, We still don’t know for sure

I certainly believe a miracle is possible.  Even probable… It’s certainly what I want.

I want my God to have all the glory.  I want those who don’t know Him to see Him and know Him.

But as a friend reminded me…God’s ways are not always my ways.

And so.  As my grandmother would tell me…He could choose to remain anonymous.

And like all the other ones of the past year…He could choose to give us another…

coincidence.