December 26, 2012

Hello, everyone! I am sorry that I haven't posted an earlier update... needless to say its been a long, stressful, extremely emotional couple of weeks. As far as Ken is concerned, he is doing well. He actually received his first dose of the study drug on Tuesday,Dec. 18th. Due to the horrific events in our town, we ended up having to bring the children with us to Boston for the first few days last week. Our dear friend Laura was kind enough to travel from Rhode Island to Boston to spend the day with our kids, so that I could be with Ken at the hospital for "day 1" of the clinical trial. He had to be closely monitored for several days, so once we knew he didn't appear to have any adverse reaction, I returned home with the kids so that they could get back to school, which was in itself an emotional experience. Later in the week, Ken's EKG's were abnormal, and indicated a possible heart attack. On Friday, they performed an echocardiogram and blood tests. The bloodwork indicated some possible damage to the heart muscle, but the echocardiogram was normal, and repeat EKG's were normal. They sent him home for the weekend, with a promise to return on Christmas Eve day. On the 24th, he recieved the study drug and again had an abnormal EKG, then they switched EKG machines and got a normal reading. All very confusing and frustrating. So tonight we are back in Boston...we met with a cardiologist today, who said that he is not concerned. While the EKG may have indicated a cardiac event, his tryponin (?) levels and echocardiogram are commpletely normal. He does have some thickening of the heart muscle, but the cardiologist claims that it is not something to worry about, and he sees no reason to take him off of the study drug. So, he is now on a daily dose...scheduled to return next week for more tests. Hoping you all had a safe and peaceful holiday, and wishing you all a happy new year.