An amazing day....

Yesterday, March 22, was a great day for many many people. It was a great day for Chris and I, and our entire family, it was a great day for those impacted by and working to cure amyloidosis, it was a great day for an incredible community of supporters, and it was a great day for Stephen and Aislinn.

Stephen and Aislinn arrived home after a grueling 1500+ mile/15 day bike ride from Jacksonville, Fl. to Holliston, MA. It was a once in a lifetime experience for them and all those who participated. They had good days and tough days, they met many great people, they promoted awareness, and they raised a staggering amount of money. Every dollar they raised, over $40,000 and still climbing, is going directly to the Amyloidosis Research Foundation. All expenses were covered by sponsor support, or frequent flier points, or the generosity of hosting families, so not a single dollar raised will go anywhere but directly to research.

There was a crowd of over 100 people when Stephen and Aislinn arrived yesterday. Friends from Holliston, schoolmates,faculty, and staff from Worcester Academy, family from PA, NJ, NH, fellow patients, and leaders in the Amyloidosis community such as Mary O'Donnell and Dr. Comenzo, and fellow bike riders from MinuteMan Road Club. They were both stunned at the reception and had no idea how many supporters across the community they had.

Stephen and Ailsinn learned many valuable lessons that they will post in their blog when they catch their breath. The biggest lesson I think we all have learned has been the incredible generosity from so many. It is mind-numbing. In this economy, with so many people worried about their financial stability, their savings impacted, and their future unknown, the number of people who made a contribution was just incredible. Every single donation meant a great deal, whether it was $5 from a child to an incredibly large, and anonymous donation (I do not know who that was, but I pray you walk with a personal pride of your great generosity and contribution). The community that we live in, all of our friends, all of my colleagues at IBM, all of those who gave becuase they suffered or lost loved ones from this disease, all of those who gave in any way were incredibly generous. As I have posted many times, just as "it takes a village to raise a child", it takes a village, an extended community, to fight a disease. Chris so far is very fortunate, but others have lost loved ones to amyloidosis. A year ago the vast majority of us had never heard of this disease. Now we are battling it on many fronts, but with an incredible village of loving, caring, supportive, and generous people with us.

I am anxious to read Stephen's and Aislinn's postings, but I am also anxious to say THANK YOU to everyone who has helped with Chris's journey to health.

Thanks to all of you so very very much.

Home again...

Chris was sent home from her night in the hospital late Saturday afternoon. She has a combination of bronchitis and early pnuemonia caused by a viral infection. She has prescriptions for a very strong antibiotic, an inhaler for opening the bronchial tubes, and the old standby Robitussin with Codine for her cough. Basically she got a bad viral infection that we did not treat quickly enough and it got into her lungs. Her coughing has irritated her bronchial tubes so much that she was coughing up blood and the coumadine blood thinner did not help. She felt well last night and is sleeping soundly. Hopefully Chris bounces back quickly as she plans on visiting her parents down in Tampa for a few days this coming week with Abby. The sun, some sitting around the pool and some sleeeping in should help her feel better.

One interesting phenomenon which I test all the time is whether the doctors seeing Chris know anything about amyloidosis. Neither the emergency room doctor nor the internist on the floor knew anything about it other than "maybe" hearing about it in a lecture in medical school twenty years earlier. In fact the ER doctor stated that Chris really has Multiple Myeloma and not Amyloidosis which we know is completely false. I cannot blame the doctors, they can only know so much, but raising awareness is so critically important.

The lesson learned here is that when she starts to feel a cold or cough coming on, it needs to be treated. She has had such a cold free winter and I think we got comfortable that her cough would pass. Obviously a big mistake that put her in the hospital for a night.

Stephen also has a homecoming today as he completes his 1500 mile ride from FL to MA today. We expect him to be arrving at the Holliston Congregational Church at approx. 2:00 this afternoon with a good crowd to welcome him home. Abby and here friend Kim left earlier this morning to take 3 others out to join Stephen in Windsor Locks and others will be joining the ride as they get closer.

His commitment to raise funds and awareness has been nothing short of spectacular. Yet the help he has received along the way has also been amazing. Donations, sponsorships, blog postings, etc. have have all been very motivating for him. He gets to do the thing he loves (riding his bike) and helps others who have suffered or lost a loved one from this disease. His is a small contribution towards what needs to be done, but he knows he can make a difference by raisng awareness. Today will be a very special day in his life. He is very tired, he aches everywhere, he is mentally spent, but he made a plan months ago and he will complete it in great style. His friends will pull him home today, but figuratively he will be pushing research and awareness. He has met so many people and heard so many stories in the last few weeks, that he is riding with a purpose that will sustain him all the way to the finish.

I'll keep the updates on Chris coming. Getting her to Florida for a few days is the next goal. She has earned it.

Thanks for all the ongoing support and interest, it means more than I can say to Chris.