Chris at almost three years

Another long overdue update, but as this blog serves as both a communication vehicle as well as an historic log of her journey, even a late update is required. This week, the last week of March, 2011, Chris had her formal "three day annual check up" at the Boston University Amyloidosis Center. Things are going very well. The check up was done in two rather then three days, with the normal discussions with the Hematologist, Nephrologist, Cardioligist, etc. Each of the doctors had a similar observation in the clinic - Chris is doing very well. She seems very healthy, she is very energetic and has a great disposition, and she outwardly appears even strongetr then she was a year prior to her diagnosis. Just as importantly, her bio markers were ALL in the right direction. Specifically, the famous "free light chains (FLC)" metric was down to 36. This number has been bouncing around, so getting a trend has been difficult. Her prior FLC was 49 and prior to that 39 (so 39=>49=>36) but 36 has been the best number she really has had. Normal is 6-26. Her BNP ( which is a measure of congestive heart failure) was under 100 for the first time ever. A number over 100 is an indication of congestive heart failure and hers has steadily decreased. At the same time her ejection fraction has improved and her left ventricle wall thickness has decreased, these are all great indicators of improvement. In fact her kappa/lambda ration is within normal range, and her bone marrow plasma cell was less then 5%. Bottom line: all very good. Chris will go back in 3 more months for another blood test to see if we can get a trend in the right direction, not just these up and down spikes. The best two numbers were the BNP and the FLC, so while we remain very cautious, we had no bad news this week, only positive news. We did meet with both Dr. Skinner and Dr Sanchorawala and we have learned to read their expressions and voice and it is clear they are pleased. The disappointing part of the conversation was one around definition. Effectively you get labelled as having a hematologic complete response (HCR) only at the one year interval post Stem Cell Transplant. Thus Chris will never formally be a complete response, only a "very good partial response". She is eligible for another high dose chemo/stem cell transplant if required in the future and of course I continue to watch every single trial for Amyloidosis as well as all of the published research. Chris has committed to make conditioning her primary job. She continues to go to her personal trainer three times per week and to yoga two times per week with almost daily 2-3 mile walks with the dog. She admits to being out of breath at the top of hills, but never avoids the stairs. This past September we went to Sedona where she kept up with all of the others as we climbed some of the most difficult trails in the area. It was truly amazing how well she did at such altitude. She has recently taken two different ski trips to Utah and a visit to Florida. Overall, other then some shortness of breath after hills, Chris is simply doing great. Recently, I wrote an article for the Amyloidosis Foundation which was published in their newsletter. I titled it " It Takes a Family and a Village" with the central theme being that nobody can battle amyloidosis alone. It has taken a very special family and the amazing support and caring of the village around her to get Chris to where she is today. Believe me, we take nothing for granted and remain steeled against this disease coming back at any time. Yet as of April 2011, three years after Chris' diagnosis of Systemic AL Amyloidosis, Chris is living a very good life, and enjoying every day with appreciation for all the support she has been given by so many. More updates to come in the future and as always thanks for your continued interest and support.