Update from BU

Chris and I heard from BU yesterday and we heard much of what we knew as well as some new good news. Chris' biomarkers continue to go in the right direction, but as I have posted, we are not over the finish line by any means. I won't repeat all the numbers, but they are all looking good. The frustrating one is the lambda light chains kind of stuck at 40. We really want this down the the mid to low 20's and we will feel much better. The good news is that (and this is a very subjective read) is that the her left ventricle wall thickening may have reduced. BU is a currently doing research on the relationship of left ventricle wall thickness and whether there is evidence of actual reduction as patients stop further amyloid protein deposition. In other words, can the heart repair itself? We have asked doctors the various cardiologists we have met with that exact question and the answer is always something like "there is some evidence of that but it is not proven" or "that is exactly what we are trying to understand". Chris' ejection fraction came in at 37% on this reading. We have seen some readings much lower, but 37% is a number she can live a good life with if it can be maintained. What is important is that it does not get worse. Thus my aggressive pursuit of getting to a complete response, even if it means an oral chemo regiment this coming fall. Chris goes back for more blood work on April 28, the full 3 day analysis in the end of June, and then we will know much more.

In the meantime, she has a terrible cold and has had some bad GI issues the last few days. Visiting our friends in DC, she was really very disappointed as she had to lie down and was sick to her stomach often. We are trying to figure out what may have caused her digestive problems, but I am becoming convinced that the Quarter Pounder with fries on the NJ Turnpike did not help. Twice in the last month she has become ill and both times she hit fast food restaurants. This is my fault as we have learned that she can't get to a point of hunger ans when she does, we have to jump on the first food we find. We have been caught off guard when we travel and not prepared with good food. I'll get better at planning.

Her cold is very bad. Certainly the worst she has had since last year. She now is on an anti-biotic, and hopefully this will help soon. Her coughing and hacking and runny nose are very bad, but she is fighting through it.

Chris rode with Aislinn in the car from DC and was amazed at how coordinated Stephen's ride is. Aislinn has this all under control. Yet I know how hard this all is in terms of navigating Stephen's ride. You miss one turn and you can end up being miles off target. I think Aislinn is the unsung hero as she has everything ready to go, thinks ahead, plans for problems, etc. These two teenagers are learning things about managing a large project that I did not understand until well into my business experience. This ride is a potential logistics nightmare, and it is going along almost flawlessly. The focus should be on the awareness and fund raising that they are focused on, and not the ride itself. Aislinn's job is to allow that to happen without problems and she is doing it incredibly well.

I personally plan on riding with Stephen a few more times this week. The ride in DC went well ( no orthopedic surgeries required) and I think I did pretty well at keeping the pace going. The worst part was riding through a tunnel, on a 12" wide sidewalk, against oncoming traffic, with my shoes clipped in to the pedals. As Bill said, "at least I didn't soil myself". Other than that the ride was beautiful and a great deal of fun to be out riding with Stephen.

So overall, some good news from BU. Chris is heading in the right direction, more waiting to do. She needs to focus on exercise and building some muscle mass and conditioning which she will continue when she gets home. We have to get rid of this very bad sinus infection first and hopefully the anti-biotic will kick in today.

I'll post this weekend after we get Stephen and Aislinn back home. Thanks for checking in and caring so much. I can't tell you all how much everyone's support means to Chris and me.