Brief Update on the Cardiologist meeting

Well, it is hard to say that Chris and I walked away with some incredible earth shaking news from the appointment with Dr Falk yesterday. We spent almost an hour with him reviewing his analysis, what the results show, next steps, etc. At the end, I asked him to summarize all of our discussions in just a few words. and he said, as he counted the words on his fingers: "I think she is doing very well".

Chris and I don't know exactly how to react to that. He did indicate that there has in fact been some decline in the heart function, as measured by the ejection fraction. He does not believe it is nearly as bad as the most recent BU analysis says, but he thinks there is some detioration since May. He did not know if that was due to further amyloid deposition in her left ventricle, or possibly the result of the high dose chemo itself. What confuses him (or as he says is "a contraindication") is that all of her other organs have responded so well to the treatment. Like Dr. Sanchorawala at BU, he says she clearly has had a very good partial response, but not the complete response we were all praying for. As such we asked him the likely next steps and he laid out pretty much the same 4 options we knew. 1) Another stem cell with high dose chemo, 2) oral Velcade, 3) oral Revlimid and 4) do nothing. Of course option 4 is not an option for me, so we ignore that. He doubts that any incremental benefits of the stem cell/chemo approach would be worth the risk due to her heart condition (the benefit being negligible vs a higher risk for cardiac involved patients). He thought the the oral Velcade would be his choice but he was clear to point out that he trusts BU and in the end that is a call they (and us) need to make.

He does want another (yes, yet another) echo next week. That way, they will have one more data point. One from BU in May, Dr Falk in November, BU again in December, and Dr Falk again in January. As echo's cause no radiation, I think getting more history for analysis is the right thing to do.

We did discuss mitral valve leakage and he stated that while there is probably some there, it was not a huge issue and there would be no action to take even if it was, as surgery would not be viable.

Chris asked the burning question "Can I ski ?". He was not very positive on that as he was afraid that any potential low blood pressure might cause her to faint and hit a tree. It was not a concern about stress on the heart from skiing, but a concern about fainting. Nevertheless, Chris and I did agree that on a beautiful sunny, non crowded day in March, we will in fact go ahead and ski. Chris enjoys skiing, is very good at it, and the hell with it, if we take it easy we can have a great day. So look for us in March on the slopes. I am not denying her of this and we set it as a goal.

Chris will get the results of next weeks echo right away, so we will have new news next week. I also need to add pictures here as I promised (but Stephen has beaten me to the punch on his 1500 mile ride for amyloidosis web site). Thanks for checking in and caring so much about Chris. As the doctor said, "She is doing great", but it just does not seem like we are yet able to close the book on this journey to good health. We are getting there however, I am very optimistic.

Please feel free to call Chris, she would love to hear from you and it is important for her to talk.
Pictures soon.

A small minor point: I am writing this post from Rochester MN, home of the other Amyloidosis Center. If I get a chance I may stop in to see the center.

1500 Miles (click here)

All of our children have been the best possible supporters of Chris throughout her journey to health. They have sacrificed a great deal to ensure that they can help Chris however she needs it; around the house, giving up activities, running errands, and keeping things going at home while Chris went through her Chemo in Boston.

Fortunately, our 17 year old son Stephen has a unique opportunity to help in another way. During a 2 week spring-break in March, he and some of his close friends have organized a fund-raiser with all of the proceeds going to the Amyloidosis Research Foundation. He and others (sponsors, friends) will bear all of the expenses ensuring that every dollar that is donated will go directly to the foundation. His ride will take him from Florida to Massachusetts over a 2 week period. This will mean he will need to cycle an average of over 115 miles everyday for 14 days - an incredible challenge. His goal is to raise $10,000 during this ride while promoting awareness.

A link to the web site he has created is on the right side of the blog. He is anxious to get a strong start toward his goal, and has already lined up sponsors who will support the ride. Any donation of any value will be greatly appreciated. This is fully tax deductible and will represent a very important donation towards the fight against Amyloidosis. Chris has been extremely fortunate that we have the medical care, the financial resources, a supportive community, and amazing friends who have all been an important part of Chris' journey. What Stephen wants do to is to help others who may not be so fortunate in their fight. Chris continues to fight, and we are sure she will win, but their are many others who can be helped by awareness, research, treatment, and support. This is his objective - not bad for a 17 year old kid.

Feel free to contact him with questions at: stephen@chrisjourney.com and please follow his blog as he prepares and then completes the ride. Chris and I thank you very much.