Some of you may have known, but most of you did not. A month or so ago, we were in the middle of a very rough cycle. Just as we thought we had hit our low point, Ethan’s doctors told us that they believed he had contracted Hepatitis C during his initial blood transfusion. Immediately, Gastro-Intestinal Physicians descended on us and began talking in tongues about liver function, blood tests and a lot of other foreign medical terminology that wasn’t part of our newly learned cancer vocabulary.
Hepatitis was like alphabet soup for us, but we quickly learned that the C-variety is an inflammation of the liver caused by the hepatitis C virus (HCV). Many people who have HCV do not know it, as it is not unusual for an infected person (especially young children) to be without symptoms. Treatment typically consists of antiviral medications (interferon and ribavirin) and often has very unpleasant side effects. For that reason, treatment is not given to everyone and Ethan did not meet the age criteria to be treated. Even with treatment, about 80% of those infected remain infected for several years, and often for the rest of their lives. And the stinker: liver damaged caused by HCV is the most common reason for liver transplantation in the United States.
When our heads stopped spinning, we learned that the INOVA Blood Services screens all donated blood for the HCV antibodies, so the infection was either an error (false-positive screening result) or the blood was donated by someone who was recently infected with HCV and whose body had not yet built up detectible antibodies against it. We prayed hard that this was a false-positive. After all, isn’t cancer enough??
Ethan’s doctors ordered a more specific HCV antibody screen (called RIBA) along with a test that would detect the presence of the actual HCV RNA. The RIBA only takes a day or two, while the RNA takes more than a week but is thought to be a definitive diagnostic. Within a day or so the RIBA came back negative. A week later, we were told that the RNA came back positive. The GI physicians ordered more quantitative RNA tests, which we waited for almost two weeks before discovering that the tests were ordered but he blood was not actually drawn in the hospital. So we started our wait over again…
Late last week, we were given the good news that all tests came back negative. For now, they are presuming he does NOT have Hepatitis C. We will repeat the same blood work every few months to be sure and follow up with the GI Physician for further explanation of the test results.
We celebrated the news by spending last weekend at Baltimore’s Inner Harbor. We all had a great time – until it came time to put Kyra down to bed in a hotel room. Oh, well… our days made up for our nights.
We’ve got more celebrating ahead, as we’re preparing for two big birthdays today. Kyra turned one at 12:21 am and Bert is Thirty-something. I’ve got this weird thing about having to hover over my sleeping children when their actual birth-time rolls around. Bert thinks I’m nuts and just grunts at me when I try to pry him out of bed to watch with me. I expect to get the same reaction from both of my children when they’re old enough to understand what I'm doing. I admit it would be a tad nicer to have had either of them born during the daylight hours...
We’re scheduled to return to the hospital on Tuesday, September 3rd for our 4th chemotherapy cycle. I’ll let everyone know how it goes. Of course, we hope it goes as well as this one has – which has been fantastic!
Warm Regards (and Happy Birthday to Kyra and Bert),
Kim.