Tuesday, December 27, 2011

A Look Back at 2011

CML has started to take a backseat in my life and I hope it stays there. I have had continued to be monitored for my blood work and my numbers remain steady and even. I am having PCR tests done at both Dana-Farber and in Portland, OR. What I find interesting, or perhaps frustrating, is that my numbers at Dana-Farber come back undetectable, but the same test in Oregon is coming up with slight traces of leukemic cells. They are very small amounts and still represent a major molecular response. It almost seems pointless to have the testing done in Boston when the results are more sensitive, and therefore, more accurate in Oregon.

In other CML news, we had our annual Light the Night Walk again this year. My daughter, Mia, took a more active role in fundraising this year and ended up being the largest fundraiser on our team. The walk took place at a new location, which was a little strange, but still a nice turnout. We raised about $4000 as a team. Mia recently received her award for being a Bright Light (raising over $1000) and she could not have been more proud. I think we found a new team captain for next year.

I also recently received an interesting letter from the father of a friend of mine from college. A fraternity brother of mine had passed away before his junior year after having a bone marrow transplant for leukemia. This was back in the early 90's before Gleevec was on the scene. Based on the letter from his father, it sounded as though my friend had CML, but was not lucky enough to have this life saving medication. His father was soliciting for a leukemia research foundation and did not know me personally. I sent him a letter back explaining my situation and the similarities between his son and myself. His son Jon, and I, both had an interest in juggling. While we were in the house together, we would often practice together. Little did I know I would struggle with the same diagnosis that eventually took his life. It made me realize how lucky I really am.

Looking ahead to 2012, I have another appointment soon at Dana-Farber and we are heading back out to Portland in May. That is a great time to visit. Mia asked if she could come out with us this year because she wants to hug Dr. Druker. I feel the same way.

2 comments:

Dan said...

Wow Jon, that is quite a story about your fraternity brother. We are lucky indeed. I am considering starting to see Dr. Druker at the one-year point -- if anything, I would want the most accurate PCR possible. :). Here's to a great 2012 for you and continued great response to Gleevec. You are an inspiration!

Anonymous said...

I would just like to let you know how your openess about your CML journey has helped me. I was diagnosed 10/27/2009 when I was 19, my story has been very similar to yours. My sister wasn't a match for me and when they checked the registry they couldn't find a match there either. I have also been switched to Tasigna because Gleevec was not working for me. Good luck with your journey, I will be waiting to read any new updates from you.