Author Archives: Carrie Roberts

Lets Blow This Wide Open

Attention #TravsArmy:

We are less than 25 days away from the first annual Travis Lee Roberts Memorial Golf Tournament.

The exciting news is that we have almost reached our max number of golfers and we are right under our monetary goal for the tournament.

But here is the truth!! Trav never met goals.
HE BLEW THEM WIDE OPEN!!!!

So… in effort to honor Trav lets do the same with this golf tournament.

You can still donate to the tournament in many ways.

There are a few golfer spots left!!! Sign up quick if you want to play.

You can sign up as a #BoomPlayer Ghost Golfer for $75. Your name will be assigned to a foursome even though you won’t be there in person.

You can pay $50 and attend the awards ceremony lunch and participate in the raffle.

You can sponsor a hole on the sponsorship page or participate in any of the other sponsorships available.

My brother Joe Pettit has been growing his hair out for a cancer wig donation FOREVER!!! He is most likely going to be able to #chophismanbun at the tournament. We offer a $50 donation to support the #chopthemanbun fund which of course goes to Cancer Kicks. This will be a great way for the Young Republicans to support Cancer Kicks and support the efforts in getting your friend a decent hair cut:)!

Or you can just DONATE to the golf tournament which goes directly to Cancer Kicks.

We are beyond excited about this event and we are SO very appreciative of the awesome support thus far!!!

I am attaching the link to the Cancer Kicks web site and the site to the golf tournament.

Please log on and donate today!!!

Please help us “BLOW THIS TOURNY GOAL WIDE OPEN!!!”

PS – Trav and I had/have the best support ever! THANK YOU!!!!

#cancekicks #kickinrarecancers #letsdothis

http://www.planmygolfevent.com/27178-TravisRobertsMemorial/
www.cancerkicks.org


The Ride

What a ride this has been. Last Friday the doctors asked if we could get to the hospital in DC from Atlanta THAT day.  That day is a lot to ask, but Travis made it happen and I followed close behind. 

As the days went on we learned about blood clots, fluid around the heart and infection of the incision.  We then learned that Travis’s body would not be ready to start the Mage trial as planned so they switched him over to the TIL trial. They said that we could start it in a few weeks, IF all of the ailments listed above look okay. 

So we adjusted mentally to the TIL and were ready for them to give us the news about when we should return for the trial.  The doctors came in and you know what we heard.

Your cells are contaminated.  All of them. 

The surgery that Travis is recovering from was a waste. 

Then the news that Travis was probably a carrier of the contamination?  A rare fungus.  WHAT???!!!

This news came on Tuesday. Now it is Friday. Results are in.

Travis Does Not Have Aspergillosis. 

The tests came back with no growth. Nothing. No bacteria. No virus. Most importantly… NO FUNGUS!!! 

The team of doctors and nurses around here are so excited.  Of course, they have fallen in love with Travis.  The nurses told us that everyone deflated on Tuesday when the Aspergillosis news hit the floor.  So as you can imagine, the news that Travis is clear of fungus has spread. We have had quite a few excited visitors come to the room just to give Trav a high five.

So what does this mean? Unfortunately, the T Cell trial is off the table for now.  I will share that the lab had saved a section of the tumors in the freezer.  They are still frozen.  Our doctor has told us to assume that they will be contaminated as well since all of the other samples were spoiled.  

The next thought is to go for the Mage trial.  This is the trial that is done by using white blood cells from a huge blood draw.

Travis was actually supposed to start Mage yesterday.  The Mage trial is new and the government regulations state that there is to be a two week space between each participant in the trial. The slot that Travis was supposed to have this week is now just an empty slot. The next slot is taken. That means that Travis will not be able to start Mage for about 5-6 weeks. The perks are that his incision will have time to heal and he will have more time on blood thinners. Also, this is a dosage trial so if Travis is forced to wait through one other participant he will get a higher dosage of cells which could be a good thing.

The negative is 5-6 more weeks without treatment. 

What a ride.  Ups Downs Tosses and Turns.  We have ridden this ride like it is our job and well it pretty much has been.

No matter what… Our faith has not been shaken. Our faith is NOT contingent upon our experiences, no matter how ugly.

We do not know the plan and we can not try to guess. But this we know, we experience God on a daily basis. When we were talking today we both said that we would not trade our lives in for anything. We never wonder where God is in all of this because we constantly experience the peace that ONLY comes from God above.

So no matter what our situation is… even through tears and heart ache as it was on Tuesday, we will thank God for giving us THIS day.

Giving us this RIDE!


Want a Little Good News?

The Cardiologist gave Trav an A on his heart function test today!

That means one thing fell in our favor. We still have a long road ahead to get to the trial but that gets us one step closer.

Thank you Jesus!!!

Also, a specialty wound nurse came in today and hooked up a tiny vacuum to Travs hole in his belly. It sucks up the fluid that is leaking instead of constantly soaking bandages, shirts, sheets… Not only that but it will keep his insides dryer which will help the wound heal faster. I can’t remember if we explained that a stitch popped open on Travs insides when he had a coughing fit. That is what caused the leakage.

The vacuum actually drives Trav crazy, but it’s a means to an end and he understands that.

That’s about all that we know right now. We aren’t sure when we go home? If we will go home? If we get a trial?

We spent a lot of time praying today. Especially praying for peace and patience. We are both struggling mentally and emotionally, but we are both Trusting in His plan.

As always, we love you #TravsArmy!

Love and Hugs~
Carrie


“Don’t Let Perfect Be the Enemy of Good”

This is what I have been told twice in the last few days. This phrase brought me to tears today in front of three doctors.

“Don’t Let Perfect Be the Enemy of Good!”

So as a reminder, Travis and I were supposed to travel back to DC this coming Tuesday to start a trial called Mage. This trial is not the trial that we originally wanted, but we were excited when the doctors explained to us last week that they would put Trav on the Mage trial to give the scientists time to PERFECT the TIL trial (that’s the T cell trial that I explained a few blog posts back in What a Guy. What a Trial.).

I can’t tell you how excited I was that we were going to get the “new and improved” TIL trial. All you have to do is google the name Melinda Bachini and you will see why I was so excited. She is the Cholangio patient and our friend who went through the TIL trial and she is kicking Cholangio big time!

She actually went through TIL twice. The first time was through what I call the “crap shoot” way and the second was what I call the “new and improved” way.

Let me just say that I am not meaning to insult this awesome trial in any way by saying “crap shoot”. It’s just what makes sense in my head.

“Crap shoot” means that they take a combo of any of the T Cells from the tumor that happen to grow well in the lab and inject them back into the body. Hoping that they put enough of the right cells in to knock the cancer back. Hoping that SOMETHING works!!!

“New and Improved” means that they send the tumors off for testing. Find out which T Cells might react well or kill the cancer cells. Then they specifically grow the “RIGHT” cells in the lab.

This way when they get to the cell injection part of the trial you KNOW they are putting the cancer fighters into the body. Raises the odds quite a bit.

Well, plans have changed and we were rushed back to DC this weekend. As Kristina wrote in the previous blog post, Travis has an infected incision, two blood clots (one in the leg and one that broke loose and made it to the lung. Thank you God for your protection over Travis with the blood clot. It could have been much worse.) Also, he has fluid around his heart and they are not sure why.

Today, three doctors came into our room and sat with us. They are amazing here at the NIH. The doctors apologized today for changing the plans constantly, but they explained that Travs case will have a moving plan depending on well… His body.

As of today the plan is… That Travis will have an ultra sound of his heart tomorrow. (Monday morning) Please pray that his heart function looks strong and that there are no other surprises.

They are going to continue treating his incision which is still draining. The infection is improving with antibiotics.

And, they are also giving him blood thinners through injection twice a day.

So, it looks like they will most likely send us home with blood thinner injections this week and then have us return in a week or two. At that time they will re check everything.

Also, at that time they will put a filter into a vein in his groin area that will protect his lungs, heart, brain… from that blood clot in his leg.

The reason that they have to do that is because Trav will not be able to continue with the blood thinners during the 3-4 week trial process.

If he looks good he will be put on the TIL trial. The bad news is that it will be the “crap shoot” version of the TIL trial.

Yes, his tumors are off being tested right now, but the testing will not be done in two weeks. Maybe not in four weeks and maybe not in six. Who knows when they will actually have that PERFECT cell determined? And then they have to have time to grow the PERFECT cell into billions of cells.

As we sat with the doctors today, I kept asking over and over in different ways if we could wait just a few more weeks and do the trial after the testing was done. If they could rush the testing. If there was any way that in two weeks the results would be in…

One doctor finally looked at me and said, “NO. There is no way that we will have the results in time.” Then Travis looked at me and said, “Carrie, let it rest. Burry the idea. It’s not happening.”

Tears burst and the idea of the perfect trial was crushed. The crazy thing is that we were excited about the “crap shoot” option just a few weeks ago. We are still excited about it. It’s the same treatment that Melinda Bachini was given her first go round. It worked well enough to get her to her second treatment where they had time to do the testing.

Its just hard because out of the 14 patients who have been through this trial, she is the only one who has had success with the “crap shoot” version. So you can see why I was excited about the other.

The doctor who boldly told me NO today is also the doctor who said,

“Don’t let perfect be the enemy of good”.

I get it Doc, If we wait for PERFECT Travs body may not be well enough to take the trial. If we wait for PERFECT we may have other unwanted surprises arise.

So…We are fighting for GOOD right now.

We are gladly fighting for this “crap shoot” option because two months ago we thought that we were out of options.

So my tears only lasted moments. We are so grateful for GOOD!

Now, we just have to get there.


Back to the NIH

We are headed back to DC for a short trip. Our heads are not as high as they once were and our feet are dragging a bit. We are tired. Let’s say exhausted.

Recovering from this surgery was no fun. Trav the rock star was taken down on this one. Lots of sleep and about 10-15 pound weight loss.

My heart has been breaking lately watching him as he rests. Knowing that he wants to be up with the family. Sharing time with the kids. Trav was such a trouper and went to Treys fields day the other morning even though he was feeling so sick. Trey was SO proud to having his daddy there even though Daddy had to sit on the class cooler much of the time.

We don’t really know why he is sick. Cancer? Surgery? Both?

Tomorrow Trav will have a 5 hour blood draw and blood will be put back into him. They are stripping out white blood cells for 5 hours. He is dreading this so much. I will let y’all know what time he is doing this tomorrow so you can think about and pray for him.

We are so anxious to hear what the docs have to tell us. We have no clue what our future holds. We will let y’all know as soon as he hear.

Leaving the babes again… This time it’s just 3 days. Be back Wednesday!

Love and Hugs to #Travs Army!
Carrie


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


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


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


Sharing A Blog on a Blog

I wanted to share my friends blog today because she posted our story on her blog. I have talked about Dorien Nielson before. Her amazing husband Kyle has Cholangio. They are a young couple like Trav and I with 4 kids. I mean young for a cancer couple, haha! I don’t really feel young at all and I doubt Dorien does either:). Anyway, they are walking along side of us and they have been a huge support. We love them dearly.

This blog post will show you a snapshot of our cancer journey. I wrote the post for Dorien about a month or so ago. We are actually into our 4th line of treatment now. When I wrote this we were on our third.

Trav and I continue to feel blessed by God for walking with us through this journey. As you will read
it is not easy, but it is a blessing.

http://thisiswhativegotfortoday.blogspot.com