Okay, this is it. Finally, what I have been working up to in my last five posts. We were on the road to recovery...rocking and rolling...because that's how we roll! We could see Casey's one year anniversary in the horizon! Ooops...he hit a bump!
About three weeks before his appointment for his one year evaluation, he started feeling very very tired and had a high fever on and off. He had a pain in his lower abdomen and would break out in sweats at night. He called his tranplant coordinator numerous times but they did not seem too concerned and just referred him to his family doctor. He saw his family doctor and they could find nothing wrong with him. They gave him a shot and some antibiotics and sent him on his way. A week later, nothing had changed. In fact, he got worse. During a routine infusion by his research nurse at Baylor-Dallas, they checked him out there as well. But they could not find any reason why he would have fever and be in pain. So Casey just decided to deal with it and hope for the best.
The day finally came for his one year evaluation. It was a long day filled with xrays, scans, mri's, blood tests, and the dreaded biopsy. He addressed his concerns with his fever and pain once again with the nurses and doctors so they decided to do a few more tests, STAT, and rush the biopsy results. A few days later, Casey gets a call from his doctor who did his transplant. He told him he was looking at the results of the biopsy and he noticed some "funky" cells. Yes, he actually said FUNKY! He was being referred to an Oncologist. Okay, great...maybe this oncologist can finally tell us whats going on! Wait a minute...he just referred Casey to an ONCOLOGIST! I had to stop and think a minute. What kind of doctor is an oncologist? As I sit there and scratch my head it hits me like a ton of bricks! OMG...an Oncologist is a doctor who studies, diagnoses, and treats cancerous tumors!! There was something that the liver transplant surgeon wasn't telling us about what they found during the biospy!! Funky cells could mean many different things...but not CANCER! We were hopeful but prepared for the worst.
The following week Casey and I visited the Oncologist. The minute the doctor walked in with his solemn facial expression, I started to cry! He spent over an hour talking to us but not once did he just say, "Casey, you have Cancer." It's like he just assumed that we knew that he had cancer and was just informing us what kind of cancer it could be and what kind of cancer it wasn't. I was totally disturbed by this, not to mention utterly distracted by the doctors hair! It was so wirey and crazy looking! He kind of looked like Yahoo Serious in that movie Young Einstein! I appreciated him taking the time to educate us but I just wanted to get out of there so bad! I just felt like saying, "Okay, we KNOW he has cancer...so when can we get treatment started!"
During our one hour or more converstion with Einstein, we learned that he had a tumor or tumors interlaced throughout his entire left lobe. He was not certain what kind of cancer Casey had because the pathology of the tumor did not look like any cancer he had ever seen! The pathology stated that it was LUNG cancer...but yet there was no tumors on his lung only on the liver. Great...leave it to Casey to be the mystery patient. He said he wasn't sure which route to take with chemo treatment since he wasn't sure what kind of cancer he had or where it originated. So he ordered a PET Scan and more blood work and said he would call us with the results later that week. Great, we must wait yet again! By the way, a PET Scan is like a CT Scan. The PET Scan is done over entire body and determines whether there is cancer located anywhere else.
We had many unanswered questions. No doctor could give us a straight answer as to how someone who was previously so healthy and had just received a new liver the year before could all of a sudden have a tumor on his liver that had overtaken his entire left lobe?! Casey was constantly going to get blood work done the year before and was carefully watched by his family doctor and by the doctors at Baylor. Turns out, the Oncologist and Liver Transplant Surgeon were thinking the same thing we were...could it have come from his liver donor? That was the only answer we could think of to my unanswered question bolded above! The doctors decided to do a test that would determine if the cancer had come from the liver donor...sort of like a paternity test for the tumor. Since the donor was a female, this test would be very easy to determine...cut and dry.
The following week, we were called with the PET Scan results. There was no cancer anywhere else in his body!! Thank GOD! So if his lung cancer in the liver did not come from his own lungs, that could only mean one thing. It must have come from the donor! Sure enough...a few days later we find out that it did come from the donor liver! Isn't that just great!? What are the freaking odds of being transplanted with a liver almost as bad as the one you had before!! This was somewhat good news, though. Since they knew how Casey got his cancer and where it originated, they were able to determine what kind of chemo treatement was best for him and get him started right away! So we thought!!
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