CODY'S FIGHT

Last week we completed day 2 of 2 for the Methodist Transplant Evaluation. The medical review board will meet this coming Thursday to make a decision on Cody's case and will be letting us know accordingly. Talk about anxiety. Alas, we take deep breaths, pray, and keep the faith that it will all be okay. I mean, what else is there to do? Besides wine. Lots of wine. However, our quest to be listed hasn't stopped with Houston Methodist. Cody's mom, Candace, and I have been hard at work the past couple of weeks coordinating with Co's insurances and medical records to pull together every test, lab, image, and scrap of paper with his medical and surgical history. All of his records have been sent to facilities across the nation that accept CCA patients for liver transplants. As I mentioned previously, transplant is not a sole cure for CCA so not every transplant center will look into Cody's case. At this time, we have sent records to: Clevland Clinic - Cl...

     Day 1 of 2 for our liver transplant evaluation at Houston Methodist is complete! In case anyone was wondering, Methodist appointment days are even longer than MDA appointment days. If you have any thought of getting out of there before 1700, you better squash it and bring your pillow and a snack because you will be camped out in waiting rooms for the long haul.           Our day started off at 0730 with a Liver Evaluation Class. This class was extremely informative and helpful. We continued the day with several tests and scans to determine if Co is well enough to qualify for a transplant. The day consisted of a lot of "hurry up and wait", good thing we've become pros at that. Some of the testing Co underwent included: Echocardiogram EKG Pulmonary Function Tests Grip Strength Chest X-Ray 21 tubes of blood Imaging with contrast PET/CT Scan Bone Scan We also met with specialists including: ...

     So, here we are. Back on chemo every other Thursday, never skipping a beat. I've now got a surly and cynical cancer hubby and everyone preaching to me to keep him in a positive mindset. Yeah, right.  You  come keep him happy, I'll be sitting back with popcorn watching the show. We've come to expect the worst and can be pretty jaded at times. We've been feeling defeated and just downright tired this year...Lord, help us because it's only March and we have a long road ahead of us. We do our best to put on happy faces and bright smiles but, honestly, that's more for other people's comfort than our own. We've been meeting routinely with Dr. Javle, continuing the chemotherapy treatments. We had to discontinue the Abraxane due to the neuropathies Co was getting in his feet and other negative side effects. The Cisplatin and Gemcitabine are keeping the tumor at bay as we continue to adapt to our new "normal".    ...

     At the beginning of February 2019, the newest scans showed a promising response to treatment. Dr. Javle was pleased with the progress Co had made and he put us back in contact with the surgical team. We were headed home to College Station after our second full day of MDA appointments and chemo when we received the call. Trips to MDA are never quick. It's a 2-hour drive one way, and one to two appointments can drag out to eight or nine hours. We were whooped, but Dr. Vauthey wanted to see us the following day to discuss "good news". We agreed and woke up at 4am the following morning to trek back down 290.      Dr. Vauthey did have good news. He was happy with the tumor's response to treatment and wanted to schedule Cody for surgery to resect the tumor. FINALLY! The day we had been patiently waiting for was within reach! We were told that chemo would no longer be necessary and we had completed his last treatment. HECK YES. The P...

     October arrived and we began meeting with Dr. Milind Javle and his medical oncology team. This department specializes in chemotherapy treatments involving liver, gallbladder, and bile duct cancers. Surprisingly, he had good news for us. Although Cholangiocarcinomas (CCA) have historically not responded to chemotherapy treatments, a clinical trial recently displayed positive results. When utilizing a specific combination of three drugs, these tumors have shown regression or stabilization. These terms are both considered "wins" in the cancer world. By prescribing Cody this treatment combination, Dr. Javle was confident that he could help us. We devised a plan for Co to undergo 3-4 months of chemo, rescan the liver, and (with tumor regression) present his case to the surgeons for reconsideration. If we could shrink the tumor and force it to pull away from the hepatic artery, there's a chance for surgery. So, you're saying there's a chance?  Hallelujah! Easie...

Looking back, I was so nieve. Hell, we were both still in shock. The gravity of the situation hadn't settled into the full depths of our minds and hearts just yet. How could it? We were fresh off the plane from our honeymoon, still, on a high from our wedding, the thought of cancer seemed absolutely preposterous. There's no way my brand new husband has cancer. Even as a nurse, I truly believed this was a mistake and that all of this could be fixed within the week.  Surely, there was an explanation or at least a quick fix to all of this. The sheepish looks on the surgical team's faces told me otherwise. They had less than ideal news for us.  The liver is a tricky organ. The bile ducts, even more so. We've been told that the location of the tumor is "problematic". The tumor has settled into the left hepatic duct occluding it so completely that the left lobe of the liver has already shrunk significantly. His right lobe has grown in an attempt t...

     And yet, here we are. It's been six months since we were told the news. It feels like yesterday and a thousand years ago all at the same time. I still remember feeling the pit in my stomach when the words "cancer" were stated. That feeling has never really gone away.      Cody was diagnosed with Stage II Cholangiocarcinoma on September 11, 2018. A Cholangiocarcinoma is a rare form of Bile Duct Cancer. The bile ducts create the tubing system that allows the bile created in the liver to drain into the small intestines. Bile helps your body digest fats and is needed to allow your GI tract to function normally. When the bile ducts become clogged, the liver will compensate for as long as it can, but eventually, the bile has nowhere to go but into the bloodstream. When this happens, you will typically see yellowing of the skin and eyes, also known as jaundice. The tumor had grown large enough to occlude Cody's bile ducts and ca...