Update on Chris - October 6

It has been far too long and as always my apologies for the long delayed updates. There seems to be little news to update the blog on until something more interesting comes along. Today will be very interesting however. First however is Chris' status. Overall she is doing and feeling very well. Other than some complaints about sore muscles in her legs, she is really feeling very energetic and is very active. As an example, this past Friday she drove up to Maine and back with my sister who is in the midst of some of her own medical issues. Chris went with her and participated in the discussions with the doctor, trying to understand the issues, the medical jargon, etc. For me it was great to hear her talk about it. Chris is now entering a new role, albeit just a small first time event, where she is the patient advocate. My sister has been very smart about being aggressive, but it is always a plus, as I have written about many times, to have some one else listening, posing questions, taking notes, etc, Chris, the patient advocate - this is very rewarding for me to see how far she is doing. She got home Friday, hosted some great family friends from Pittsburgh, went over to a small party, and then drove back up to Maine Saturday night to watch Melissa compete in here first half-marathon in Portland (Melissa did great). Then back home Sunday and immediately started painting some new windows we had installed. To me, this is evidence of her doing very well. She is active, generally with a great disposition, and living "in the moment". One way we will live in the moment is to take a family cruise this winter with all three kids home from college, along with my sister and her family. This disease has significantly shortened Chris perspective on time and she feels the need to do things in the "now", not in the future. I understand this completely. but I also know we still have a long future ahead of us and we need to plan for it. So overall, Chris is really doing very well. She continues to read every amyloidosis blog she can find, and devotes a great deal of time tracking her friends, even though she has never met them. In Ohio, NJ, Florida, California, she hurts for them when they hurt and she is thrilled for them when they are dong well. It is a strange social network, as Chris feels so much emotion based on there individual stories, yet has never met them, except Tim and Connie in Ohio. Chris wants to reach out and offer any help she can, but she also does not want to invade any privacy. For now, she just prays for all who have been impacted by this disease.

Tonight is a special night. Chris and I, and much of our family members will be in NYC at the annual Amyloidosis Research Foundation dinner. Aislinn and Stephen will be honored for their fund raising efforts based on the 1500 mile bike ride completed last March. This will be a night of acknowledgement for their hard work and appreciation for the contribution of so many many people. People from all over Holliston, friends from Worcester Academy, those who have lost loved ones, and those who have been watching Stephen and Aislinn blog all share in this celebration tonight. I believe Dr Skinner and Comenzo will be there along with the host, Mary O'Donnell, President of the Foundation. Also there will be some names of people who I cannot wait to meet. I will not put their names on the blog here, but I have been looking forward to this night for along time. Not only to see Stephen and Aislinn being recognized, but to meet some people I have been very anxious to meet.
Finally, I'll let you know that ABC News was at the house for a few hours last night interviewing Chris and Stephen. I expect this segment to be on the news in Boston - Channel 5 today or tomorrow. When it does run, I'll post a clip on the blog. This will be Stephen's second news story by a television crew. Articles have run in newspapers across the spectrum of print media, from local papers in Jacksonville, North Carolina, and Holliston to national publications such as AARP and Triathlon magazine. Stephen set out on a mission to improve awareness about amyloidosis, and for a 17, now 18 year old kid, he's done pretty damn well. Last night it was the 6:00 and 11:00 anchor in Boston who came to the house to do the story.

So possibly, while Stephen and Aislinn are being recognized in NYC tonight, there will be a story running in Boston - all focused on the need to improve awareness. I'll try to post some pictures of the event if I can.

Chris' next medical event is the blood and urine workup in Boston the end of October. This will be an important data point as it will tell us any change in direction or confirm Chris' overall improvement.

Thanks for being patient with me as I slowly update the blog. The news is usually not as exciting as it is today, but as always, all of our thanks to those who have been supporting, watching, calling, and helping Chris.