I've tried to keep a running history of Chris' Journey to Health since she was first diagnosed with Amyloidosis in the spring of 2008. This post will hopefully provide a good update as to her current health and future outlook.
Using the theme of the annual State of the Union address that the US President gives annually, I'll state here that the status of Chris' health is "strong and the future continues to look positive". Her story is documented in all of the previous posts entered over the last six years, but of course it is difficult to truly capture all of the dynamics; the minor set backs, the continued tracking of all of the clinical trials, the emotions (both good and bad), "the wait" for the latest numbers from her regular tests at Boston Medical, the loss of good friends, etc. So here is a brief glimpse of her life (from my vantage point) in 2014:
-we have moved to Bratislava, Slovakia (where on earth is that?) on an International Assignment for IBM. Chris and I have been here since January and will spend a few years here. After many previous attempts to get her to move to China on an assignment, she finally agreed to another tour of Europe (her third -Belgium as a teen, Paris with all the kids ten years ago). Bratislava is just 30 miles form Vienna and Vienna is just 2 relatively easy flights into Boston. Chris feels that should she need to get home quickly, she could. Additionally, communication technology (e.g. MagicJack, SlingBox, FaceTime) has really shortened the perception of being far from home. We can talk to anyone in the US as if we are next door, which really reduces the perception of being far away.
-after one particularly relieving annual visit to Boston Medical, I remember Chris getting into the car and saying "OK, I am ready for a big change". Well she got what she asked for as Slovakia is a big change for sure (despite the technology). Yet, she and I are having a great time here. We live in an amazing apartment right on the Danube, we can walk to great restaurants, and most weekends we get in the car and travel: Vienna, Budapest, Prague, Slovenia, etc. I post this not to brag about it (we know how fortunate/lucky we are), but to show how Chris has a zest for life. She wants to see the world and enjoys her healthy status as much as she can. Earlier this year we took a trip to China, Vietnam, Cambodia, Thailand, and Singapore. Why? because she was healthy enough to do it. We do not take a single day for granted and Chris truly believes in "seizing the day". For me, I never want to look back someday and say "I wish we had done more when she healthy". The famous phrase "hope for the best, plan for the worst" comes to mind often. We are both realistic that Chris has not had a Complete Hematological Response from her stem cell transplant, so again, we "seize the day".
-Chris overall feels very well. She is not limited in any daily activity. She continues to walk daily (now around Bratislava) and goes to the gym regularly. She has reduced heart function (due to increased heart wall thickness and reduced ejection fraction), but she knows how to self-regulate if she feels fatigued or heart stressed. What we have learned is that she continues to suffer from a reduced immunological system that really hits her hard when she gets exposed. This spring she spent over a week in the hospital with Respiratory Syncytial Virus (RSV) which usually hits children under the age of 3. This resulted in severe pneumonia which really knocked her for a loop. Yet she has recovered well. There is very little upside to these events, but one that continues to be amazing is how quickly a support system forms (remember my previous posts about "it takes a village"). The minute Chris started getting sick, her volunteer army deployed into action. Her best friends, her sisters from PA and NJ, my sister, our children, the community, etc. were all fantastic. Chris happened to be home in Boston for tests at BMC and got sick after that appointment. While I was back in Slovakia, our son Stephen took on the role as Chris' "personal aggressive medical advocate" and did an outstanding job. His knowledge of amlyoidosis, his biology degree, his current job as a medical assistant, and more importantly his maturity in patient advocacy all aligned to provide the support she needed. I flew back as soon as I could get a flight home but knowing the amazing support system and advocacy were in place made all the difference. Chris and I thank everyone who helped so much.
- As stated, we do not take a single day for granted. The reality of this disease hit us both very hard this spring and we carry a hole in our hearts for the loss of two great pioneers in the battle against Amyloidosis. Judy Lessard passed away in March from Amyloidosis. She was a fantastic fighter and advocate and Chris and I had the amazing opportunity to meet her at the annual Amyloidosis event sponsored by the Amyloidosis Foundation led by Mary O'Donnell. We first got to know Judy when she reached out and asked our son Stephen if she could join him for part of his fund-raiser bike ride for Amyloidosis Awareness from Florida to Boston. Here was an Amyloidosis survivor riding her bike, basket in front, a very pleasant diminutive woman riding along with him on his 1200 mile ride. Stephen in full cycling gear and Judy on her bike with the press in tow. Judy was a great fighter. The other great fighter we lost was Tim Hornbeck. Tim and his amazing wife Connie founded Secure Harbor http://www.secureharbor.org/ to help those in need as they fought this disease. We got to know Tim and Connie as Tim underwent Chemo and a Stem Cell Transplant at the same time as Chris. We spent many a dinner later on comparing notes, hearing abuot the success of Secure Harbor, and the the details of their two boys. Tim was one of the most pleasant, gentle, and truly genuine men I have met. He suffered through many chemo regiments and treatment related illnesses, but never did I ever hear him complain and never did he stop advocating for those in need. Tim leaves a huge legacy in the Amyloidosis community as well as the hole in our hearts. I know Connie will continue to be one of the best advocates possible in this battle. We will miss both Judy and Tim whom we had the great fortune to meet due to this disease.
- Clinical Trials and Research continue to be regular reading and investigation for me. I have tried to keep current on as many of the ongoing trials as possible. I strongly encourage anybody who want to understand the clinical trial activity for any disease to search on that disease on www.clinicaltrials.gov. Whether amyloidosis or any disease a loved one is battling, you can arm yourself with knowledge as to the current state of the art in research and become aware of trials that are underway - many of which are open to patients. For amyloidosis, the International Symposium on Amyloidosis was held in April in Indianapolis, Indiana. This is a critical event where the medical community leaders worldwide who are working to beat this disease meet every two years to review their progress. There is a great deal of research going on and I am personally amazed at the progress. I watch the trials on lenalidomide and bortezomib and pomalidomide carefully and truly feel there is significant progress in the last six years that I've been watching. Of particular note is that our son Stephen has been published as a researcher on a trial to identify mis-folded amlyloidosis proteins in affected cells.
So wrapping up, I'll summarize with the view of the world from this vantage point:
- Chris is doing very well, but we do not take a single day for granted. It may be easy to forget that exactly six years ago Chris was in a fight for her life - literally. She was replanted with her own stem cells after a round of high dose chemo that came as close as possible to killing her without doing so. We both remember often just laying bed, holding each other very very tight thinking about all of the documentation that showed average life expectancy, death rates from the high dose chemo, risks of stem cell transplants. etc. We live our lives to the fullest now because we have the opportunity to do so. We know that her Amyloidosis will be back -painful to say but that is the hard truth. In the meantime she prepares for the battle by exercising daily while enjoying her family and friends. Our daughters Melissa and Abby have been fantastic at keeping her emotionally healthy. They have a zest for life that is infectious to Chris (this time a good infection) and she feeds off of their success and their regular (sometimes daily) calls. Stephen has always been an advocate as well and remains connected to the amyloidosis research community. Of course her family and friends have been been incredibly helpful and unselfish.
- This battle against this lethal disease continues. For amyloidosis readers who are new to Chris' story, I urge them to stay current on the trials and research. I am very optimistic about medicine's ability to win this battle, but we all need to be armed with the knowledge.
- My final thought for this post sums up what I truly believe is the single biggest lesson learned in this six year battle: Be overly aggressive when it comes to medical care. Don't let these diseases manage you, but instead fight as hard as you can to manage (and beat) it. Find the best physicians in the world (not your local practice), know more about the disease then your primary physician, read every article you can find, know every trial under-way, question every single diagnosis (the first three of Chris' were wrong), and be aggressive, aggressive, aggressive.
Thanks for reading and all the amazing support for Chris.
Our prayers for Judy and Tim.
Using the theme of the annual State of the Union address that the US President gives annually, I'll state here that the status of Chris' health is "strong and the future continues to look positive". Her story is documented in all of the previous posts entered over the last six years, but of course it is difficult to truly capture all of the dynamics; the minor set backs, the continued tracking of all of the clinical trials, the emotions (both good and bad), "the wait" for the latest numbers from her regular tests at Boston Medical, the loss of good friends, etc. So here is a brief glimpse of her life (from my vantage point) in 2014:
-we have moved to Bratislava, Slovakia (where on earth is that?) on an International Assignment for IBM. Chris and I have been here since January and will spend a few years here. After many previous attempts to get her to move to China on an assignment, she finally agreed to another tour of Europe (her third -Belgium as a teen, Paris with all the kids ten years ago). Bratislava is just 30 miles form Vienna and Vienna is just 2 relatively easy flights into Boston. Chris feels that should she need to get home quickly, she could. Additionally, communication technology (e.g. MagicJack, SlingBox, FaceTime) has really shortened the perception of being far from home. We can talk to anyone in the US as if we are next door, which really reduces the perception of being far away.
-after one particularly relieving annual visit to Boston Medical, I remember Chris getting into the car and saying "OK, I am ready for a big change". Well she got what she asked for as Slovakia is a big change for sure (despite the technology). Yet, she and I are having a great time here. We live in an amazing apartment right on the Danube, we can walk to great restaurants, and most weekends we get in the car and travel: Vienna, Budapest, Prague, Slovenia, etc. I post this not to brag about it (we know how fortunate/lucky we are), but to show how Chris has a zest for life. She wants to see the world and enjoys her healthy status as much as she can. Earlier this year we took a trip to China, Vietnam, Cambodia, Thailand, and Singapore. Why? because she was healthy enough to do it. We do not take a single day for granted and Chris truly believes in "seizing the day". For me, I never want to look back someday and say "I wish we had done more when she healthy". The famous phrase "hope for the best, plan for the worst" comes to mind often. We are both realistic that Chris has not had a Complete Hematological Response from her stem cell transplant, so again, we "seize the day".
-Chris overall feels very well. She is not limited in any daily activity. She continues to walk daily (now around Bratislava) and goes to the gym regularly. She has reduced heart function (due to increased heart wall thickness and reduced ejection fraction), but she knows how to self-regulate if she feels fatigued or heart stressed. What we have learned is that she continues to suffer from a reduced immunological system that really hits her hard when she gets exposed. This spring she spent over a week in the hospital with Respiratory Syncytial Virus (RSV) which usually hits children under the age of 3. This resulted in severe pneumonia which really knocked her for a loop. Yet she has recovered well. There is very little upside to these events, but one that continues to be amazing is how quickly a support system forms (remember my previous posts about "it takes a village"). The minute Chris started getting sick, her volunteer army deployed into action. Her best friends, her sisters from PA and NJ, my sister, our children, the community, etc. were all fantastic. Chris happened to be home in Boston for tests at BMC and got sick after that appointment. While I was back in Slovakia, our son Stephen took on the role as Chris' "personal aggressive medical advocate" and did an outstanding job. His knowledge of amlyoidosis, his biology degree, his current job as a medical assistant, and more importantly his maturity in patient advocacy all aligned to provide the support she needed. I flew back as soon as I could get a flight home but knowing the amazing support system and advocacy were in place made all the difference. Chris and I thank everyone who helped so much.
- As stated, we do not take a single day for granted. The reality of this disease hit us both very hard this spring and we carry a hole in our hearts for the loss of two great pioneers in the battle against Amyloidosis. Judy Lessard passed away in March from Amyloidosis. She was a fantastic fighter and advocate and Chris and I had the amazing opportunity to meet her at the annual Amyloidosis event sponsored by the Amyloidosis Foundation led by Mary O'Donnell. We first got to know Judy when she reached out and asked our son Stephen if she could join him for part of his fund-raiser bike ride for Amyloidosis Awareness from Florida to Boston. Here was an Amyloidosis survivor riding her bike, basket in front, a very pleasant diminutive woman riding along with him on his 1200 mile ride. Stephen in full cycling gear and Judy on her bike with the press in tow. Judy was a great fighter. The other great fighter we lost was Tim Hornbeck. Tim and his amazing wife Connie founded Secure Harbor http://www.secureharbor.org/ to help those in need as they fought this disease. We got to know Tim and Connie as Tim underwent Chemo and a Stem Cell Transplant at the same time as Chris. We spent many a dinner later on comparing notes, hearing abuot the success of Secure Harbor, and the the details of their two boys. Tim was one of the most pleasant, gentle, and truly genuine men I have met. He suffered through many chemo regiments and treatment related illnesses, but never did I ever hear him complain and never did he stop advocating for those in need. Tim leaves a huge legacy in the Amyloidosis community as well as the hole in our hearts. I know Connie will continue to be one of the best advocates possible in this battle. We will miss both Judy and Tim whom we had the great fortune to meet due to this disease.
- Clinical Trials and Research continue to be regular reading and investigation for me. I have tried to keep current on as many of the ongoing trials as possible. I strongly encourage anybody who want to understand the clinical trial activity for any disease to search on that disease on www.clinicaltrials.gov. Whether amyloidosis or any disease a loved one is battling, you can arm yourself with knowledge as to the current state of the art in research and become aware of trials that are underway - many of which are open to patients. For amyloidosis, the International Symposium on Amyloidosis was held in April in Indianapolis, Indiana. This is a critical event where the medical community leaders worldwide who are working to beat this disease meet every two years to review their progress. There is a great deal of research going on and I am personally amazed at the progress. I watch the trials on lenalidomide and bortezomib and pomalidomide carefully and truly feel there is significant progress in the last six years that I've been watching. Of particular note is that our son Stephen has been published as a researcher on a trial to identify mis-folded amlyloidosis proteins in affected cells.
So wrapping up, I'll summarize with the view of the world from this vantage point:
- Chris is doing very well, but we do not take a single day for granted. It may be easy to forget that exactly six years ago Chris was in a fight for her life - literally. She was replanted with her own stem cells after a round of high dose chemo that came as close as possible to killing her without doing so. We both remember often just laying bed, holding each other very very tight thinking about all of the documentation that showed average life expectancy, death rates from the high dose chemo, risks of stem cell transplants. etc. We live our lives to the fullest now because we have the opportunity to do so. We know that her Amyloidosis will be back -painful to say but that is the hard truth. In the meantime she prepares for the battle by exercising daily while enjoying her family and friends. Our daughters Melissa and Abby have been fantastic at keeping her emotionally healthy. They have a zest for life that is infectious to Chris (this time a good infection) and she feeds off of their success and their regular (sometimes daily) calls. Stephen has always been an advocate as well and remains connected to the amyloidosis research community. Of course her family and friends have been been incredibly helpful and unselfish.
- This battle against this lethal disease continues. For amyloidosis readers who are new to Chris' story, I urge them to stay current on the trials and research. I am very optimistic about medicine's ability to win this battle, but we all need to be armed with the knowledge.
- My final thought for this post sums up what I truly believe is the single biggest lesson learned in this six year battle: Be overly aggressive when it comes to medical care. Don't let these diseases manage you, but instead fight as hard as you can to manage (and beat) it. Find the best physicians in the world (not your local practice), know more about the disease then your primary physician, read every article you can find, know every trial under-way, question every single diagnosis (the first three of Chris' were wrong), and be aggressive, aggressive, aggressive.
Thanks for reading and all the amazing support for Chris.
Our prayers for Judy and Tim.
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