Tag Archives: Piedmont Hospital

The Dream Team

Tuesday was a good day

Tuesday I met with the dream team.  This is the team that I am hoping God put together to save my life.  At 1:30, I had my first meeting with my interventional radiologist.  He is very young (36) with a young daughter.  For the record young doctors, when you have a rare disease, make me feel better than old doctors.  They just get it.  They are edgy, risky, and understand what it means to not want to leave your children behind.   They are not hardened by failures.  They don’t just phone it in and look at you as a stat.  They see a father.  They understand when you tell them that you would rather die by being overly aggressive in 18 months. By pressing and fighting to get the tumors small enough to just maybe be lucky enough to have a liver resection(instead of dying at 24 months without trying).  They understand that six months is irrelevant in the grand scheme of things.  When you look at what is going on in the world of Cholangiocarcinoma the standard of care for my stage is chemo first then some sort of radiation.  I do not know if I have even heard of doing them at the same time in any of the CC chat rooms.  This Dr. wants me to start chemo Thursday and get set up for y-90 radiation at the same time.  This from what I can tell is NOT the standard.  This is risky.. This will make me very sick…  We are going to meet with Dr Hamrick tomorrow before I start my chemo.  We are going to get his opinion on doing both chemo and radiation at once.  Then we will decide. 

Next we met with a liver transplant/resection doctor.  He is one of a 3 person surgical team in this department at Piedmont.  These guys come highly recommended and they are incredible.  At one time we had 6 people in the room wanting to meet me.  We thought that we might be having a party.  For one thing it is amazing that this surgeon took his time to meet me.  I am not a candidate for surgery at all right now and no other hospital thought there would be any point in having me meet with a surgeon.  This guy truly wants me to get to the point that I can have a surgery.  That means I have to have the cancer out of my lymph nodes.  At that point, one of the guys on the 3 man team will take on my liver.  If they think there is the slightest chance that they can  help me, they will do surgery.  This guy got it!  He got that I want to go out guns blazing.  If I am going to go out… I am going to go out fighting.  His words were, “you are a 38 year old otherwise healthy father of 3. We are going to throw the kitchen sink at you”.  Thank you God!  That is what we have been looking for. 

So even though it is scary to go to the doctors and see the looks on the faces, we did not get that from Piedmont Hospital.  They saw me for who I am and not as a stat.  They were straight up about my challenges, but they told me not to give up hope.   That is what Carrie and I needed to hear. 

The prayer request now is that my cancer will react positively to the chemo that I start tomorrow.  I will be going every other Thursday, and the treatment will last about 5 hours.  I will be learning how my body deals with the chemo as far as side effects.  Then I will be scanned in 2 months to see how the cancer has reacted.  Two months is not long enough to make great progress, so it will be considered progress if the cancer has not grown or spread.  BUT, lets pray for shrinkage and especially that it kills those cells in my lymph nodes.

I want to thank everyone for your love, support and prayers.  We are blown away by the kindness.  I keep asking Carrie, “Where have I been?  I never knew that people were this good”.   So thank you for being there for me.  God has given me the strength that I need to make it through each day, and I thank Him for that every morning and every night.  

Cancer Kicks.

ImageIf you know Travis you know his style. And you know he is known for his style. His clothes are as wild as his personality and his shoes…as loud. Kind of like these little gems. His recent purchase. His new “cancer kicks”.

And you love him for it. Love him to the point that you take the fashion RISK of buying them in his honor. Wearing them in his honor. Friends like Steve Matheson and Charlie Cogen (aka The Chuckster) buy crazy shoes like this and send Travis pictures of them wearing them…just to make him feel better. Just to make him smile. Because that’s how much Travis is loved.

IMG_0139Loved by his precious wife, who is walking this journey along side him…in her own new pair of “cancer kicks.”

So Travis just wants to say thanks. Thanks for all the love. The support. And introduce you to his new “cancer kicking” shoes. He bought them for this trip. For this FIGHT. And he is ready to fight. He now has…a plan.

God has been so faithful in answering our prayers. Perhaps not always in the way we would want but His ways are so much greater than ours. So even when we may not agree I guess we just have to trust. After yesterday’s post, Disneyland for Dead People, our dear friend Kelly emailed me and said:

I am a faith person – I will believe to the point of people thinking I am an idiot!!! But I tell u this, I DO believe he will be healed!!! Having the lab tech read the results wrong isn’t much of a miracle….and I know God is gonna give us all a KABOOM miracle that forces the blind to see!!!! Not unto death….I believe it!

Guess I’ve got a lot to learn about being a faith person. Anybody else?

Yesterday, Carrie and Travis received confirmation that it is, in fact, Cholangiocarcinoma. They met with an expert, Dr. Shroff, (and I mean expert) in Cholangiocarcinoma. Cholangiocarcinoma and Pancreatic Cancer are the only things she works on. They could not have been in better hands so there is no more questioning if this is what Travis has.

And yet. Travis and Carrie feel peace. Prayer Answered.

Yesterday, Dr. Shroff sat and discussed treatment options with them in depth. There are so many treatment options. More than Travis and Carrie first realized. More than our “Google research” ever showed. Despite that, her suggestion aligned with the original suggestion that Dr. Hamrick, aka Dr. Rockstar, gave initially. She feels the best course of treatment, initially, would be to attack this cancer with two chemotherapies at once – Gemcitabine and Cysplatnum. Travis will be given chemo every two weeks for six hours. After two months they will reassess and determine their next course of action. Their next line of defense. It could be some kind of localized radiation such as Y-90 or Proton Therapy or another type of chemo treatment.

So the treatment course is clear. There is no worry about making the “wrong decision”. There really is no decision to make. Prayer Answered.

Dr. Shroff felt strongly about using the Gemcitabine and Cysplatnum together. She explained that their studies have shown that the Gemcitabine is far more effective when it is used in combination with Cysplatnum. So are you ready for the exciting part?

They have only been using this combination for THREE years. So who knows if the scary stats on the Internet are even close to being accurate anymore! There seems to be advancements in treatment pointing to possible…survivors????? For the first time ever. MD Anderson is giving them options, and, there’s a little bit of tangible hope. Prayer Answered.

And…the treatment prescribed.  Can be done in Atlanta.  Home.  Travis getting treatment and sleeping in his own bed.  With his family.

Prayer Answered.

Additionally, Carrie and Travis found out that MD Anderson would push for him to have Foundation 1 testing. Foundation 1 testing is an expensive, genetic testing that will show doctors which chemotherapy treatments your body is susceptible to. Scientists look at your DNA and look at where the gene is mutated and that tells them which specific chemo can attack it best. Sadly, many patients don’t get this. Either their doctor does not push for it, their insurance company won’t pay for it, or they cannot afford it. Your body can literally reject the chemotherapy and it will not fight the cancer. This test helps avoid that. What’s more is that Dr. Shroff stated that, because Travis’ cancer is so rare the Foundation will want it. So…if they can’t get it covered by insurance the Foundation will likely eat the cost.

Prayer Answered.

But what about all those scary statistics? What about those percentages? Don’t get me wrong. Cholangio is still a scary thing. And the percentages and numbers and expectancy doesn’t change. But. Dr. Shroff doesn’t see Travis as a number. Dr. Shroff sees him as an individual. And within just 30 minutes of meeting with Travis she was able to see him for who he is…a fighter. And SHE SAID….”I think you are an outlier.” Just. Like. Dr. Hamrick.

Prayer Answered.

The only way cholangiocarcinoma is ever cured is with surgery. But stage four patients are not eligible for surgery. Ever. Since first finding this out and seeing the stats between those who had surgery, and those who did not, Travis has been searching for a surgeon who would roll the dice on him. Who would take a chance. Because he knows that is his only chance. Yesterday…he found that surgeon. A conference call with a Piedmont Hospital suregeon at 5:00 gave Travis his first hope for surgery.

Prayer Answered.

But. Currently, Travis’ tumor is so large it is crossing between his right and left lobe in the liver. No surgeon in the world will touch that. He basically wouldn’t have a liver left if they did. So. We have to pray for the impossible. Pray that Travis’ body not only takes the chemotherapy but that it shrinks the tumor. This is a long shot for two reasons. First, cholangiocarcinoma does not usually respond to chemotherapy – which is why it is a “bad one”. Second, on the patients who do respond it typically does not shrink the tumor. It simply eats up the cancer but leaves the tumor “carcus” behind. We need it to get out of the left lobe. We need it to shrink. And then. Despite the odds. Despite the “rules”. The surgeon will consider surgery.

Today, when Travis went back to get the I.V. for his CT scan, the nurse looked at him and bluntly said,” Do you believe in God?”

Travis responded, “Yes. Yes I do.”

“Well keep believing honey…cause I see miracles walk out of here every day.”

I don’t know about you but I see God working in the Roberts life. He is answering prayers. Holding them in His mighty hand. Giving them peace.

Standing with God, Travis and Carrie are ready to take on this beast. In their new “cancer kicks”.

The Waiting Game

Waiting sucks. Plain and simple. Just ask…anybody.

I remember in June of 2004 we booked the cruise of a lifetime for that December. I thought the wait was going to kill me.

Or a kid waiting for Christmas. Or their birthday. It tortures them (and their parents).

How about Fridays? How hard is the wait when you drag yourself in on Mondays?

A high schooler waiting for summer break. A first grader waiting for a loose tooth to fall out. A giddy 12 year old for an upcoming slumber party. A bride for her wedding (the groom for their honeymoon).  Football season.  Water to boil.  The microwave to finish.  The traffic light to turn green.  This blog page to load.

Waiting to fight for your life.

Wow. Suddenly the others seem so trivial.

Can you imagine, every day, waking up knowing you have cancer inside of you and having to wait for the treatment plan to fight it?  What is that like? “Good morning cancer. I know you’re in there. Eating away at me. I’m going to have to ask that you ‘freeze’. No spreading. No growing. Just freeze. Cause I am waiting for the plan to fight you.”

Talk about feeling helpless.

Travis and Carrie are waiting. Stuck in a holding pattern. Waiting for test results to be mailed. Records to be faxed. Doctors to review. Appointments to be made. All the while knowing there is this thing inside of him trying to kill him. Can you imagine?!?

Can. You. Imagine?

So this week we ask that you pray for things to fall into place. Quickly. There is no time to lose. How the pieces of a puzzle fall into place to create a picturesque image – not a piece out of place – we pray everything would fall into place for the Roberts.

Specifically… For MD Anderson to receive everything they need from Kaiser. For Emory to receive all of the records they need. For the appointment with the Piedmont Hospital surgical team to happen this week. For the appointment with the Emory team to happen this week. For the appointment with MD Anderson to happen early next week.

For all pieces to fall into place. Because waiting sucks.

So now for the best part of all…

Everything you just read was written first thing this morning. I always ensure the Roberts read, make changes, and approve posts before they are published. After all, this is their story. This post was waiting to be published. And the calls started rolling in. Travis has his appointment with Emory tomorrow at noon. His appointment with MD Anderson on Monday.

The records have been delivered. The appointments have been made. Before the prayer even left our lips… the puzzle is coming together…beautifully. One could even say – miraculously.

They still need your prayers for the remaining pieces to fall into place to perfect the picture.  They would like their appointment with the Piedmont surgical team to happen before they go to MD Anderson so they know the surgical options available here.  They also need the pathology slides, from Travis’ liver biopsy, to get to MD Anderson before their appointment Monday.

Who knows?  Maybe God is already working on finalizing those final pieces of the puzzle.  Because even though He sometimes uses it as a tool for refining us. God knows…waiting sucks.

And endurance develops strength of character, and character strengthens our confident hope of salvation. Romans 5:4

Our Hope is Not in Google…

Travis underwent a endoscopy and colonoscopy yesterday morning.  Talk about kicking a guy when he is down.  It was assumed nothing would be found but there was so much hope in that something would be found.  When this journey started the Roberts said “anything but colon cancer…colon cancer is a death sentence.”  Now they are praying for colon cancer.  Irony at its finest.  You see, when they said “anything but colon cancer” they didn’t know about Cholangiocarcinoma which is one of the last remaining possibilities.  I mean…have you ever heard of it?  It is one of the rarest cancers.  One people out of 150,000 cancer diagnoses will have Cholangiocarcinoma.  One. Because it is so rare there are very few treatment options available and the ones that are available…the cancer usually resists.  Or maybe Adenocarsinoma of an Unknown Primary.  In layman’s terms that means “we don’t really know where it is coming from so we have to blast you with everything.  All chemos. And hope for the best.”  So a doctor coming out saying “we found the remnants of a tumor in the colon. Esophagus. Intestines.”  ANYWHERE ELSE…would be indescribably amazing.

But that isn’t what the doctor said.  The doctor said “we found nothing”. A clean colonoscopy and endoscopy.  What is this crazy world we have entered where up is down and down is up?  Where the news of NOT finding cancer in the colon, rectum, intestines, esophagus, etc. is BAD news? Nothing makes sense anymore.

Confused?  So are Carrie and Travis.  But just Google the statistics on Cholangiocarcinoma.  Or Cancer of an Unknown Primary.  Or the survival rates. It won’t take long to learn why the Roberts would pray for colon cancer. But.  Our hope is not in Google.

The narrowing down began on Friday…

Travis had his PET scan on Friday and the doctor called with the results at 4:30.  Depending on who you ask you will get a different answer.  Some of us think it was awesome.  It showed cancer in the liver and in the lymph nodes of the abdomen wall, as they expected.  It also showed a small amount of cancer in the lymph nodes in his pelvis and collar bone.  Doctor Hamrick was not surprised by these finding a and was quick to say a VERY small amount.  All of his organs look clean.  Bones…clean. Pancreas, colon, intestines, stomach…clean, clean, clean and clean.  Amazing.

But, understandably, Travis was upset by the news, and didn’t find it so awesome.  What he heard, and what resonated through his mind was, it spread to other lymph nodes.  Again, the doctors were not surprised or even upset by this finding.  But to the individual walking around with this disease it was pretty devastating.  It makes it real.  Somehow even more real than it already was.  Now it is this living thing. Growing inside of him. Traveling in his body.  What gives it the right!?!?!?  WHO INVITED THESE MUTATED CELLS ANYWAY.  I can understand being discouraged that this uninvited, unwelcomed guest has taken up shop in another part of your body.  It’s scary.  But our hope is not in the absence or spreading of these mutated cells.

Dr. Hamrick  had additional news to share as well.  He presented to the surgical team at Piedmont Hospital and they are willing to meet with Carrie and Travis this week.  While Dr. Hamrick says Travis is absolutely not a candidate, at this time, for removing the cancer from his liver surgically he does think he would be a candidate for having Y-90, a surgical treatment that allows them to blast the heck out of the tumors directly with radiation. But our hope is not in the Y-90 treatment.

Dr. Hamrick also said that he found a medical trial going on, right now, at Emory for Cholangiocarcinoma but, at the time, he wasn’t sure if Travis would be a candidate.  However, he called Sunday afternoon (yes, Sunday afternoon…now how’s that for a doctor working to save your life!) and said he found out Travis would be a candidate for the trial.  They should be meeting with the doctor at Emory this week to discuss the clinical trial.  But our hope is not in a clinical trial.

Additionally, the Roberts will be traveling to MD Anderson to get a second opinion.  When you are fighting something like this you need the best.  MD Anderson is the best. Perhaps “The Best” can give them a definite diagnosis.  A definite treatment plan.  What will they recommend?  Will it align with the recommendations of Dr. Hamrick?  The Piedmont Hospital surgeons?  The clinical trial at Emory? But our hope is not in the recommendations and opinions of doctors.

Once they get all of the results back, have their meeting with the surgeons, and their second opinion from MD Anderson,  it will be time to make decisions.  Lots and lots of decisions.  Decisions that seem like life or death.  But our hope is not in the ability to make the “right” decision.

Travis is not an indecisive person.  Anyone who knows him can testify to that.  Indifferent at times maybe…but not indecisive.  You can’t be indecisive when you are the president of one of the largest concrete companies in the Southeast.  But Travis has never had to make decisions regarding his life.  Now it gets tricky. Or so it seems.

Travis’ hope.  The Roberts’ hope.  OUR hope is in the Author of life.  The One who does not look at statistics.  The One who does not look to doctors.  The One who does not Google.

And so, Lord, where do I put my hope? My only hope is in You. - Psalms 39:7