Diagnosed on October 22, 2015, at age 24; Passed away on July 30, 2017 at 26
Written by Clint’s wife, Jenny
Clint’s FHC journey started in August of 2015. Significant weight loss, pain in his abdomen, getting painfully full after small meals, getting dizzy and utterly exhausted during normal life activities like grocery shopping — overall just not feeling great. Clint started seeing a doctor in September because things felt off. After a full month of several blood tests and being tossed back and forth between several different specialists, Clint’s doctor finally decided that he needed an appointment with their GI specialist. As a standard procedure, they did an ultrasound of Clint’s abdomen to review before his appointment. The next morning at 8 AM, Clint got a call from his doctor’s office asking him to immediately go to St Luke’s Hospital (Houston, TX) because they they found a “spot” on his liver. Naturally, we were alarmed by this but never could have imagined that we were heading into the journey that we were. They did a CT scan that afternoon and informed us that Clint had a 16 cm solid mass on his liver. We stayed overnight, and the next day they did a very painful biopsy of the mass. We had to wait one week for the official results, but Clint’s doctor prepared us that it was likely cancer and referred to us to an oncologist to move forward with. One week later on Thursday, October 22, 2015, we got the official results that we were dreading — Clint was diagnosed with Stage IV Fibrolamellar Hepatocellular Carcinoma.
We quickly scheduled appointments with Dr. Kaseb’s team at MD Anderson Cancer Center to guide us in the next direction. Less than one week later (around the beginning of November 2015) Clint was starting treatment — 5FU and Interferon. After dosage and schedule adjustments, he ended up doing one week on and one week off of treatment. His first scans in January showed shrinkage of about 20%, which was incredible. We were anticipating this to be our ticket to get him into and eligible for surgery, but were extremely disappointed when Dr. Kaseb’s team told us that it was “highly unlikely that Clint would ever become a candidate for surgery”. The words still ring in my ears like it was yesterday. We scheduled an appointment with Dr. Vauthey (surgeon at MD Anderson) the following week anyway, just to get his opinion, and he was pleased to tell us that YES he felt confident that he could successfully remove Clint’s tumor and the surrounding lymph nodes. He wanted to operate on Clint, and we scheduled the surgery immediately.
On February 25, 2016, Clint had a liver resection, where they removed his left lobe and several surrounding infected lymph nodes. The surgery took about 5 hours, and Clint made a full recovery afterward. Dr. Vauthey was sure that he resected all the tumors and considered Clint cancer-free going forward.
Clint’s first post-surgery scans were in the middle of April 2016. They showed two “spots” — one on his liver and one near his stomach. Dr. Vauthey felt confident that these two spots were scar tissue left from the surgery, but he wanted to watch them just to be sure. The plan was for Clint to continue on treatment — 5FU and Interferon — after his surgery, but this halted the plan. Now we were going to do one and a half months without any treatment to see if the two spots grew or not. Scans in June showed that both spots grew and several more showed up on his liver, too. Clint immediately started treatment again — 5FU and Interferon — at the end of June 2016.
Clint powered through this summer of treatment like no other. He honestly had the determination and courage not to let this hold him back from living his life. We went on a few trips this summer during his “off” weeks of treatment and enjoyed concerts, went hiking through the mountains, fished in the ocean, gambled in Las Vegas, got engaged, and spent quality time with our family and friends. Clint’s story would not be complete without mentioning his will to power through his treatments and genuinely enjoy each day.
July and beginning of August 2016 were great. Clint was feeling run down from treatment, but he was also feeling good. He had a way of knowing his body. He always knew what his scans would should — growth or not — before he even got the scans. Towards the end of August, Clint started having new pains, mainly in his back. We knew the scans would not be good, and we were right. Scans at the beginning of September showed that the current treatment was no longer working, and the cancer had spread to his chest with several small nodes in both of his lungs.
Time to regroup. We knew there was a phase II clinical trial being held at UT Southwestern in Dallas, TX — ENMD 2076 — specifically for FHC patients. We knew a few other patients who were having success with the trial, and this was the route we wanted to take next. Dr. Kaseb was on board with us, too. September turned out to be a roller coaster though. Clint had issues with his bilirubin skyrocketing, and we spent the majority of the month going in and out of the hospital for procedure after procedure. After a second attempt to successfully place a biliary stent, things were finally stable. His labs were finally cleared to start the ENMD 2076 trial at the end of October 2016.
This trial was challenging, as we traveled from Houston to Dallas every week for a month for labs, check-ups, etc. At the beginning of January 2017, Clint’s scans showed mixed results. And after consulting with Dr. Kaseb, we all unfortunately agreed to move on and look for better treatment options.
Clint started a new phase I clinical trial at MD Anderson in the middle of February 2017 — MLN0128 paired with ziv-aflibercept — that was hosted by the National Cancer Institute. The trial had a rigorous schedule but was otherwise manageable. Clint felt great during the two months on the trial, much better than he had in a while. We were feeling good about the upcoming scans. In the middle of April, Clint flew home from his bachelor trip in Key West at 6 AM for scans in Houston at noon — as I said, very dedicated to living his life fully and on his own terms. His scans showed mixed results. And although there was some growth, and the cancer had spread to his bones, there was also an 18% shrinkage. We were over the moon and hopeful by this response, and Dr. Kaseb was too.
The plan was to continue on the trial; however, one thing happened after another, causing them to hold Clint’s treatment each week. Clint officially stopped the trial soon afterward, as he had only been able to take two doses over the past five weeks. It was time to look for new options. During this period, Clint also started having fluid problems in his lungs, around his heart, and in his abdomen. He had two pleurx catheters placed — one in each of his lungs — that we began draining daily at home. He also had a procedure in the middle of May to drain the fluid from around his heart. Clint started taking Nexavar (sorafenib) on June 1, 2017, with hopes to stabilize things so that his health could improve and he could qualify for a new clinical trial soon. That was our goal.
Side note — in the middle of all of this chaos, we somehow managed to take a twelve-day road trip through Colorado and get married in Vail at the beginning of May, surrounded by all our closest family and friends. Clint was actually in the hospital the week before we left for four days and back in the hospital again the week after we got back for five days. Truly God’s timing.
In the middle of June, Clint was admitted to the hospital, and we ended up staying for 28 days. He had a major bleed in his stomach caused by a tumor pressing into it. After that was under control, Clint went through five days of radiation to shrink that specific tumor and keep it from being as problematic. Then it was just one thing after another, after another. Clint’s heart reaccumulated fluid that we had to have drained again, he was unable to get back on blood thinners because of the major bleed and formed blood clots in both of his legs and in one of his arms, and he was unable to keep down any food — just a few of the main concerns.
On July 5, 2017, we got the most unexpected, devastating news. Because of all the issues that Clint had going on, starting treatment again would be too hard on his body. We were told that Clint had a few months left, and we left the hospital with follow up appointments at MD Anderson and home health care — still holding onto every ounce of hope that we had. Two weeks later, we were back in the emergency center where we were told that Clint’s kidneys and liver were beginning to fail. We set up things with hospice care and pushed to get out of the hospital as soon as possible. We came home the morning of July 29th where Clint spent quality time with his family, friends, and puppy. He was more aware and responsive than he had been in several days — talking and laughing and being himself those last few days. Clint was called home to be with God on Sunday night, July 30, 2017.
Clint was an independent and carefree person who loved his family and friends, music, sports, and being outdoors — especially fishing. He was young, healthy, and active when diagnosed with FHC in 2015. One time shortly after his diagnosis, Clint’s surgeon joked that he was the healthiest cancer patient that he had ever seen. After his diagnosis, Clint remained dedicated in his work as a safety engineer, his many hobbies, and his will to fight his illness. He was a courageous fighter and maintained an uplifting, positive spirit, even throughout his final months.
I will forever be grateful for the 21 months that God gave Clint to live bravely and love fiercely in the face of such adversity — I know he was just as grateful for that time, too. In honor of Clint, his family and I have chosen to remain a part of the FCF family to help spread awareness.