Here is a link to a newspaper article that was published today down in NC. Aislinn, Andy, and Stephen met with Judi Collins and a reporter and this was the result.
http://www.jdnews.com/news/stephen_62967___article.html/collins_disease.html
One note of interest, Stephen normally does not ride in socks and sandals. I am sure he takes his bike shoes off as frequently as he can.
Friday, March 13, 2009
Wednesday, March 11, 2009
Day 3 Return Visit
We met with the Nephrologist (kidney specialist) today and went through some of the numbers that were available. Based on what she had seen come in, Chris' numbers all look good. She went through a good analysis as to how the amyloid proteins limit the kidney function and how they allow protein to get into the urine. Protein leaving the body is generally bad and an indication of amyloidosis, along with other causes. One of the indicators of protein in the urine is "foamy" urine that is very bubbly. It can also be an early indicator of diabetes so it should always be analyzed if there is foaminess (sorry to be so focused on urine tonight). The other biomarker is the amount of creatinine. Creatinine is the waste by-product of muscles and if too high indicates renal damage. Chris' number is .64 and the normal range is .5 to 1.0. So again this is very good. The doctor also expected that the 24 hour protein number would continue to decrease over time.
What we need is the total package of results which we will not have until next week. The normal procedure is that we get the call on Friday afternoon with the next steps. For this time, we will not hear until Tuesday or Wednesday.
They do want Chris to do another set of blood test (not the doctor visits) and she will do that on April 28th. Then she has her 12 month evaluation at the end of June. What we heard today was that it would not be until the June meeting that they declare what kind of response it was (complete or partial) and what the next steps are. So this is going to be slower than I would like but they need the full year to understand the total affect of the stem cell replant and chemo.
So, as I said yesterday, we are running in the right direction, but we do not know if and when we will cross the complete response finish line.
One thing that is really good is that the Director of the BU Amyloidosis Research Clinic asked us to meet with her in her office. She said that there had been a lot of talk about what our son was doing on his bike ride around the center and she wanted to tell us how amazed they are and supportive they want to be. They have invited Stephen and Aislinn to come and get the "VIP" tour of the center, meet with the doctors, see the labs, etc. I am wondering if maybe they might give a quick presentation to the medical staff on a Friday when they all meet. They will have great pictures and video's (and will get more there) and it would be a great dry-run for their presentation back at Worcester Academy.
So no real news until next week when they call with their final packaged results. We are pleased with the direction but would like to have all the biomarkers at or beyond the target. We are not there yet.
Your donations to the Research Foundation keep coming in. Thanks for all your support, your continued calls to Chris, your prayers and well wishes. We both believe that they are making a huge difference. In the meantime, Aislinn and Stephen march north. They have some great stories to tell, so their blog will be much more interesting for the next few days than mine.
More next week.
What we need is the total package of results which we will not have until next week. The normal procedure is that we get the call on Friday afternoon with the next steps. For this time, we will not hear until Tuesday or Wednesday.
They do want Chris to do another set of blood test (not the doctor visits) and she will do that on April 28th. Then she has her 12 month evaluation at the end of June. What we heard today was that it would not be until the June meeting that they declare what kind of response it was (complete or partial) and what the next steps are. So this is going to be slower than I would like but they need the full year to understand the total affect of the stem cell replant and chemo.
So, as I said yesterday, we are running in the right direction, but we do not know if and when we will cross the complete response finish line.
One thing that is really good is that the Director of the BU Amyloidosis Research Clinic asked us to meet with her in her office. She said that there had been a lot of talk about what our son was doing on his bike ride around the center and she wanted to tell us how amazed they are and supportive they want to be. They have invited Stephen and Aislinn to come and get the "VIP" tour of the center, meet with the doctors, see the labs, etc. I am wondering if maybe they might give a quick presentation to the medical staff on a Friday when they all meet. They will have great pictures and video's (and will get more there) and it would be a great dry-run for their presentation back at Worcester Academy.
So no real news until next week when they call with their final packaged results. We are pleased with the direction but would like to have all the biomarkers at or beyond the target. We are not there yet.
Your donations to the Research Foundation keep coming in. Thanks for all your support, your continued calls to Chris, your prayers and well wishes. We both believe that they are making a huge difference. In the meantime, Aislinn and Stephen march north. They have some great stories to tell, so their blog will be much more interesting for the next few days than mine.
More next week.
Tuesday, March 10, 2009
Day 2 Return Visit
More tests today and some relatively good news. Chris had another echocardiagram today ( I think this is about the 8th one in the last nine months). We have learned that reading these is clearly very subjective so each person that analyzes the echo measures, analyzes, and sees different things. Thus it is most important to a) have progressive readings over time and b) have the same person do it. In our case, we are most comfortable with Dr. Falk as he has so much experience and has written so much based on his own research. We will have todays test sent prior to when Chris meets with him in April.
We also participated in the weekly support group meeting. I have written about this before. There are many stories told around the table; people who had a stem cewll transplant six years ago to those who are being evaluated for the first time. I have attended many of these and I know all too well the feeling of being overwhelmed by the words, the science, the numbers, all this stuff that people talk about and as a new participant you just sit like a log with an internal fear that is eating you up. There has to be a better way to help the newcomers than exists today. Just like we were, they are scared to death, they are trying to understand what on earth is going on, and they bombarded with all these tests and words, and complex things that just spin around and want to make your head blow up. Chris and I were shaking as we drove home after our first few days. This can be done better, I am sure. It is very clear that the strength, the willingness to learn, and the organization of the caregiver/advocate is probably as important as anything. I have seen caregivers who love their spouses or family members dearly but in no way are they capable of navigating the maze. They are conmforting, they hold their spouses close, but they are not prepared to be advocates, at all. Yet today I saw others who were ready for the battle. They asked a ton of questions, listend very intently, asked more questions, and learned from the others who went first. They are right on top of things, keep every test result, and do their own research. They will be both great caregivers AND great patient advocates.
More specifically for Chris, here are the numbers we have and my thoughts:
Lambda Light Chains: June '08=> 600+, December '08=> 40, March '09=> 40
This means no change in the amount of lambda light chains in her body. Good news is no increase, bad news is we are not at the target yet, which is under 21. This could be better, and needs to be.
Protein - 24 Hour Urine collection: June '08=>3800, December '08=>2800, March '09=>1800
This is clear continued improvement and of course is trending in the right direction. It is expected that this will continue to improve over the next few months. The target is about 150, so while there is clear improvement, there is more to go, which should happen.
Kappa/Lambda ratio: June '08 =>N/A (off the chart). Dec '08=> .2, March '09=> .29
This is very good, the target is above .25 and she is there. There are many ways to analyze the ratio, but when the lambda number is going up and the ratio is going up, this is a good thing.
BNP: June '08=> 269, Dec '08=> 286, March '09=> 204
This is the measure of congestive heart failure (CFH). Anything above 100 is a sign of some CFH, but Chris' is going down. This is good. The higher the BNP, the lower the cardiac output and the lower the blood volume pumped. This is trending down so we are pleased.
There are just some of the many tests, but here is how I sum this up:
Things are progressing in the right direction, they are generally getting better, but we are not over the finish line of a Hematologic Complete Response (the famous HCR). We want to reach the HCR objective. Tomorrow we do some more test, primarily kidney function, and then we will get our final report next week. They have already told us that they will want her back for blood work (not all the evaluations) in 4-6 weeks.
I have told them that when they think of Chris, they need to think of one word; aggressive. I do not want further protein deposition and we know how important getting an HCR is to life expectancy. I get the sense that some of the doctors at BU are almost saying "it's really good, stop worrying". Not me, I will only be comfortable when I hear the doctors say " congratulations, you have a complete response".
If Chris does need another round of chemo, we all agree that it would be after the summer. We lost the entire summer last year and we want to enjoy one this coming season. Chris would start in September. But, let's see what the final report says when we get it next week.
Another update tomorrow I hope. Thanks for checking in, it means a great deal to us.
We also participated in the weekly support group meeting. I have written about this before. There are many stories told around the table; people who had a stem cewll transplant six years ago to those who are being evaluated for the first time. I have attended many of these and I know all too well the feeling of being overwhelmed by the words, the science, the numbers, all this stuff that people talk about and as a new participant you just sit like a log with an internal fear that is eating you up. There has to be a better way to help the newcomers than exists today. Just like we were, they are scared to death, they are trying to understand what on earth is going on, and they bombarded with all these tests and words, and complex things that just spin around and want to make your head blow up. Chris and I were shaking as we drove home after our first few days. This can be done better, I am sure. It is very clear that the strength, the willingness to learn, and the organization of the caregiver/advocate is probably as important as anything. I have seen caregivers who love their spouses or family members dearly but in no way are they capable of navigating the maze. They are conmforting, they hold their spouses close, but they are not prepared to be advocates, at all. Yet today I saw others who were ready for the battle. They asked a ton of questions, listend very intently, asked more questions, and learned from the others who went first. They are right on top of things, keep every test result, and do their own research. They will be both great caregivers AND great patient advocates.
More specifically for Chris, here are the numbers we have and my thoughts:
Lambda Light Chains: June '08=> 600+, December '08=> 40, March '09=> 40
This means no change in the amount of lambda light chains in her body. Good news is no increase, bad news is we are not at the target yet, which is under 21. This could be better, and needs to be.
Protein - 24 Hour Urine collection: June '08=>3800, December '08=>2800, March '09=>1800
This is clear continued improvement and of course is trending in the right direction. It is expected that this will continue to improve over the next few months. The target is about 150, so while there is clear improvement, there is more to go, which should happen.
Kappa/Lambda ratio: June '08 =>N/A (off the chart). Dec '08=> .2, March '09=> .29
This is very good, the target is above .25 and she is there. There are many ways to analyze the ratio, but when the lambda number is going up and the ratio is going up, this is a good thing.
BNP: June '08=> 269, Dec '08=> 286, March '09=> 204
This is the measure of congestive heart failure (CFH). Anything above 100 is a sign of some CFH, but Chris' is going down. This is good. The higher the BNP, the lower the cardiac output and the lower the blood volume pumped. This is trending down so we are pleased.
There are just some of the many tests, but here is how I sum this up:
Things are progressing in the right direction, they are generally getting better, but we are not over the finish line of a Hematologic Complete Response (the famous HCR). We want to reach the HCR objective. Tomorrow we do some more test, primarily kidney function, and then we will get our final report next week. They have already told us that they will want her back for blood work (not all the evaluations) in 4-6 weeks.
I have told them that when they think of Chris, they need to think of one word; aggressive. I do not want further protein deposition and we know how important getting an HCR is to life expectancy. I get the sense that some of the doctors at BU are almost saying "it's really good, stop worrying". Not me, I will only be comfortable when I hear the doctors say " congratulations, you have a complete response".
If Chris does need another round of chemo, we all agree that it would be after the summer. We lost the entire summer last year and we want to enjoy one this coming season. Chris would start in September. But, let's see what the final report says when we get it next week.
Another update tomorrow I hope. Thanks for checking in, it means a great deal to us.
Monday, March 9, 2009
Day 1 at Boston Medical return visit
Things went well at BU today, for the little we learned. Chris had the 24 hour urine collection, lots and lots of blood taken, and a chest x-ray. We did not get all the results of course, but the chest x-ray results were very good. For the first time in over a year, Chris did not have any fluid in her lungs. This is really encouraging and we were glad to here it. We did meet with two doctors, one for a general review of her overall health, and then the hematologist, Dr. Sanchorawala who we both have a great deal of respect for and who runs the stem cell transplant program. She was very positive on Chris' progress, but we still need to see the results of the lambda light chains. This is the big number we are waiting to see as it will be an important determiner of the next plan of attack.
We discussed all of the various chemo options: Velcade, Revlimid, and possibly a combination of Velcade and Melphalan with dexemethesone. There is a possibility that we may have to go back in a month for more blood work to just track the data points. That may be when a final decision is made. I of course want to be as aggressive as possible and I have told every doctor I see that same thing. I am not happy with the 94% response, and Chris agrees, so we need to get 100% and pursue all potential options. We just won't know those options for awhile I guess.
The doctors were all fully aware of Stephen's ride. They have been very impressed and tell us that we must be very proud. Of course we are. There is a computer at the center and everyone was reading his web site and congratulating us.
We were very glad to spend some time with our friends from Ohio. Tim went through the stem cell transplant a month before Chris and is doing very well. He is now on an oral dose of chemo and we are learning from him all of the good and the bad. It is clearly tough on the body, but Tim is soldiering through it very well. Tim and his wife Connie have started a foundation where they will own an apartment in Boston and give it to Amyloidosis patients who are in need of financial support for their living expense while staying in Boston. Connie has this all planned out but is in need of some organization/coordination/management support from someone in Boston. Chris is very interested in helping as she has had such great support from so many people here in Holliston and donations from people all over the US. This could be a really win/win /win situation. Connie and Tim start a fantastic foundation, those in need of help get it, and Chris gets to give back (or pass forward) all the help she has received.
So bottom line, we don't know much yet, but hopefully we'll know a bit more tomorrow. Thanks so much for your interest and incredible support.
We discussed all of the various chemo options: Velcade, Revlimid, and possibly a combination of Velcade and Melphalan with dexemethesone. There is a possibility that we may have to go back in a month for more blood work to just track the data points. That may be when a final decision is made. I of course want to be as aggressive as possible and I have told every doctor I see that same thing. I am not happy with the 94% response, and Chris agrees, so we need to get 100% and pursue all potential options. We just won't know those options for awhile I guess.
The doctors were all fully aware of Stephen's ride. They have been very impressed and tell us that we must be very proud. Of course we are. There is a computer at the center and everyone was reading his web site and congratulating us.
We were very glad to spend some time with our friends from Ohio. Tim went through the stem cell transplant a month before Chris and is doing very well. He is now on an oral dose of chemo and we are learning from him all of the good and the bad. It is clearly tough on the body, but Tim is soldiering through it very well. Tim and his wife Connie have started a foundation where they will own an apartment in Boston and give it to Amyloidosis patients who are in need of financial support for their living expense while staying in Boston. Connie has this all planned out but is in need of some organization/coordination/management support from someone in Boston. Chris is very interested in helping as she has had such great support from so many people here in Holliston and donations from people all over the US. This could be a really win/win /win situation. Connie and Tim start a fantastic foundation, those in need of help get it, and Chris gets to give back (or pass forward) all the help she has received.
So bottom line, we don't know much yet, but hopefully we'll know a bit more tomorrow. Thanks so much for your interest and incredible support.
Sunday, March 8, 2009
Some important days coming up....
Chris and I go in to Boston tomorrow for three days of tests tomorrow. Effectively, we will learn two things, 1) what is the current status of her amyloidosis (specifically her amyloid protein production) and 2) what the course of treatment will be. For the first question, it could be anything from worsening, to being stable, to improving. Since her response was a 94% reduction back in January, it would be great to see a total response. This would mean no second round of chemo, no further treatment other than continued medicines she is on now. If there has been no improvement, then I am sure she will have to do a second round of chemo this spring.
The process will be the same as before. Three days of tests on her heart, kidney, liver, lungs, etc. then a medical team conference on Friday followed by the famous call to us saying what the prognosis and course of action is. Chris and I are both getting a little nervous and it will hit us hard when we get there in the morning. As I have said many times, we will pray for the best, plan for the worst.
The outpouring of generosity to Stephen's quest to raise awareness and help further the level of research has been absolutely amazing. I do not know hardly any of the details of the contributions as Stephen is keeping this close to the vest, but I can tell you that many many people have been more than generous. Stephen has been amazed at the response. He is keeping a list of all of the donors and will be sending a thank you note upon is return. Everyone has been just incredibly generous in this economy. People have donated signs, shirts, biking equipment, housing, and have even hosted cocktail parties to raise money - just amazing.
I have spoken to a few people who have asked how he is doing. He has finished day two with great progress and many stories already. He and Aislin will have some incredible experiences to share when they get back to Worcester Academy. He does update his blog late every night at
www.chrisjourney.com and he is also sending quick updates during the day form his phone at www.twitter.com/chrisjourney . We can actually track his progress real time using a combination of igoogle and a blackberry. One thing that I have learned from his ride is the value of technology for communication. Between blogs and Twitter and igoogle, it is really easy to stay connected.
Chris and I cannot thank you all enough. The Holliston community, Worcester Academy friends, IBMers, people who have lost loved ones or have suffered themselves, the prayers, the love, the generosity, it is all beyond belief. It is impossible to properly thank you all.
Please continue the prayers for success this week, both for Chris and Stephen.
The process will be the same as before. Three days of tests on her heart, kidney, liver, lungs, etc. then a medical team conference on Friday followed by the famous call to us saying what the prognosis and course of action is. Chris and I are both getting a little nervous and it will hit us hard when we get there in the morning. As I have said many times, we will pray for the best, plan for the worst.
The outpouring of generosity to Stephen's quest to raise awareness and help further the level of research has been absolutely amazing. I do not know hardly any of the details of the contributions as Stephen is keeping this close to the vest, but I can tell you that many many people have been more than generous. Stephen has been amazed at the response. He is keeping a list of all of the donors and will be sending a thank you note upon is return. Everyone has been just incredibly generous in this economy. People have donated signs, shirts, biking equipment, housing, and have even hosted cocktail parties to raise money - just amazing.
I have spoken to a few people who have asked how he is doing. He has finished day two with great progress and many stories already. He and Aislin will have some incredible experiences to share when they get back to Worcester Academy. He does update his blog late every night at
www.chrisjourney.com and he is also sending quick updates during the day form his phone at www.twitter.com/chrisjourney . We can actually track his progress real time using a combination of igoogle and a blackberry. One thing that I have learned from his ride is the value of technology for communication. Between blogs and Twitter and igoogle, it is really easy to stay connected.
Chris and I cannot thank you all enough. The Holliston community, Worcester Academy friends, IBMers, people who have lost loved ones or have suffered themselves, the prayers, the love, the generosity, it is all beyond belief. It is impossible to properly thank you all.
Please continue the prayers for success this week, both for Chris and Stephen.
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