Some Good Milestones - mid February

A long overdue update. My only defense is that when there is not any significant news, I don't want to bore anyone with the mundane. Yet, I know there is so much support and interest that providing updates is important.



In the last few weeks, Chris has really "broken out" as they say. She has been going back to her personal trainer at the gym she went to prior to her diagnosis and has started a series of sessions where she will focus on her strength, building back some muscle mass, and some minor conditioning. This was an objective of hers as part of her recovery and I know that she is very happy she is back doing this. When you combine this with her regular walks and her yoga classes, it is clear she is really getting back into the swing of things. After a few more months, the next physical activity objective is to get back on the tennis court. That will have a special meaning in many ways as it is where she was when her doctor called with the bad news. I have always said we need to be back hitting balls prior to that anniversary, and I am sure she will do it.



Another milestone was getting back to church. Chris has tried to be very cautious about being in large crowds where people have potential colds and flu's and lot's of handshaking. With no immunity system, this has been a concern. But she really wanted to go and was prepared for any bugs she might pick up. Of course when she got there she was given lots of hugs by many people who were so excited to see her and she was shaking many many hands. She got home, washed her hands, and never got a thing. She was very glad to get back there for lot's of reasons.



This gave her some confidence to go to NY this past weekend for Abby's NCAA swim meet championship. We drove to Syracuse and went to the meet every morning and evening with a very large crowd, all packed in tight, with many people using door knob's, hand railings, etc. A few months ago Chris would never have attempted this, as the risk would be to high, but she did great, meeting many people. I in fact had a bad cold and did not want to risk giving it to others so I did not shake hands, while Chris was doing it for me. What a great role reversal. By the way, Abby did fantastic and was very happy.



Melissa has been calling from Australia and giving us the updates on her new escapades. Chris loves to hear the stories of her adventures in New Zealand and getting settled in Perth. I know Chris is anxious to start travelling again and hopefully will get to Florida in the next month or so after our visit to BU Medical in a few weeks. By the way, Melissa loves Perth.



So while I have been trying to stay out of the way for Stephen's bike ride, I can attest that it is coming together well. His friend, Aislinn Shea has been organizing the routes, the houses and hotels they will stay at, and the overall logistics. Stephen has been focusing on getting into shape with long rides on weekends and many hours in the basement training. Doing 100+ miles every day, for 15 days will be an incredible challenge and take a real toll on his body, but he is up for it. Aislinn will be critical in keeping the momentum going once they get started. Chris and I will be at our three days of tests in Boston while they are on week 1, so it will be a busy week for amyloidosis activity.

As I said, Stephen and Aislinn do not let Chris and I get very involved in his fund raising efforts for the research foundation, and thus I know very little. What I do know is that many many people have donated and it is incredible to see. I do not know the amounts and that is not important to me, but what is important is that he has many individuals contributing. Friends at IBM have been fantastic, friends from across town and nearby, friends of Stephen at school, it is just amazing. However, the ones that Stephen does tell me about are the ones with a letter attached to the donation. Many of them are from families who have lost loved ones to amyloidosis, or who have personally fought the battle themselves and are doing all they can to help find a cure. The stories are gut wrenching sometimes, but that is why Stephen is doing this ride. He knows he had a very ill mother, and he knows she has done very well so far, but he is painfully aware that others have lost husbands, fathers, mothers, wives, sisters and brothers. Creating awareness and finding a cure are what he and Aislinn doing this trip for.

In the meantime we will prepare for the BU appointments March 9, 10, 11. We could get great news (normal lambda light chain levels) or very bad news, but we will go in praying for the best and preparing for the worst.

I had not realized how many other amyloidosis patients read this blog, but based on the donations and the links to other sites, it is clear there are many. I can tell you, although you have not met Chris, she reads your blogs as faithfully. We both pray for you all, Amy, Kevin, Debbie, etc. We share your losses, your progress, your success.