Aspirates are clear but we are still waiting on the bone biopsy results.
Cautious Yippee.
Wednesday, November 12, 2008
1st Lesson learned at NCI Translates
No, I still don't know anything regarding Sydney's results. The waiting is torturous. So, in complete defiance of my worry I am going to talk about my trip to Washington, D.C. and the NCI Translates meeting.
Now, the first thing that everyone should know about the NCI Translates meeting is its purpose. While I am sure there is a much more technical and well worded definition somewhere it comes down to this: the purpose of the meeting was to speed up cancer research. To me this is very interesting. Think about it. This is a government agency and they are working very hard to increase efficiency. Who would have thought? I did not think that was possible. This says something very important about our leaders within the NCI. They are clearly committed to hastening a cure. I found this very impressive. I have always envisioned them as being just another slow moving cog in the wheel of research bureaucracy but I must be the first to admit that my perception is changing.
I walked away from this meeting with 3 key messages. Today, I will do my best to address the first. I am quite sure that these messages were not shared universally but they are, none the less, my opinions. At this meeting the NCI unveiled 6 new pathways. One of the primary goals was to get the researchers to start thinking in terms of these pathways. What are pathways? Well, think of a pathway as a road map. They include specific directions on how to take a lab result or idea all the way to a specific cancer treatment or intervention. The pathway describes each step in the process and every key decision that needs to be made. The end result of following these "directions" is either a new cancer discovery that can be applied to a patient or a productive failure. Either way the research impacts the the patient. Either they have a new treatment or preventative measure or we have proven that the new discovery does not work and should be abandoned.
Now, from a patient perspective this may seem nonsensical. Well, of course, this is the way they should be thinking. Sadly, in reality it is not. The bulk of research is done with no end goal in mind. Research is done as a discreet project. It is chosen and pursued because it was what was funded. Finally, it is done regardless of how the science ultimately effects the patient. Read that again - most research is done without regard of what impact it will have on the cancer or the patient. The NCI has stepped in and said we no longer want to fund discreet projects. If you want us to fund your research you have to show us where it fits within these pathways and how you plan to impact patients. For many researchers this is a completely different way of thinking about cancer research.
In fact, this was our job at the NCI. We were their to get researchers thinking about the patients. We asked questions to get them thinking about how their research will get to patients. What are the challenges? What are the steps? What resources do they need to get to the next step. How is their discovery going to make a difference in a cancer patients life.
Ironically much of the research presented had already reached the end of the pathway. A perfect example is the work of the NANT. This is why their work is held in such high regard. They are very good at translating basic research into clinical therapies. Overall, I found that pediatric researchers were much more adept at this process. I think this is largely due to their lack of patients and resources. They have no choice. But, then again, this could just be my bias showing.
Will these new pathways speed up our search for a cure? Well, yes and no. If the pathways are actually referred to and implemented I think it is very likely that research could speed up. Bottom-line, more people will be aware of the steps necessary to get their discoveries into the clinic. This is likely to get them addressing road blocks more quickly. For example, if they now know that they will face intellectual property issues or IRB issues in a future step they can start preparing for them early. If they believe their research will only get funded if their is an efficient plan to get the discovery into the clinic, then they will make sure is has one. These simple steps can literally shave months, years, and decades off of some projects. The pathways also encourage (rely on) collaboration which I think could be extremely helpful in speeding the process. If we are going to move more quickly we have to break down the walls. We have to get the researchers talking and collaborating. We have to tear down the research silos.
There are still problems though. While it is great that we now have the recipe for success. We are still lacking some critical ingredients. For example, while the NCI can demand that the research they fund fits within these pathways and is translational in nature they don't have any authority to do so. It turns out that the NIH actually sets the standards and guidelines for what research is funded and how it is evaluated. Until the guidelines change, there is little meat behind this idea. There is no carrot on the stick. Right now, research is not funded on whether it can translate into the clinic. It is funded on the merit of the research as it sits alone. Until researchers are funded (and only funded) by how their research fits into the translational picture I fear they will continue to work the same way.
The good news is that there are grants that are starting to appear and the carrots are significant. The NCI has created a mechanism to help move truly translational research forward. Although there are just a few awards to date I truly believe that it is the wave of the future. If you want to get funded by the NCI you are going to have to show how your research will translate into the clinic. In this sense, they are hastening a significant change.
I was honestly, and pleasantly, surprised at how much purpose the NCI has.
Now, the first thing that everyone should know about the NCI Translates meeting is its purpose. While I am sure there is a much more technical and well worded definition somewhere it comes down to this: the purpose of the meeting was to speed up cancer research. To me this is very interesting. Think about it. This is a government agency and they are working very hard to increase efficiency. Who would have thought? I did not think that was possible. This says something very important about our leaders within the NCI. They are clearly committed to hastening a cure. I found this very impressive. I have always envisioned them as being just another slow moving cog in the wheel of research bureaucracy but I must be the first to admit that my perception is changing.
I walked away from this meeting with 3 key messages. Today, I will do my best to address the first. I am quite sure that these messages were not shared universally but they are, none the less, my opinions. At this meeting the NCI unveiled 6 new pathways. One of the primary goals was to get the researchers to start thinking in terms of these pathways. What are pathways? Well, think of a pathway as a road map. They include specific directions on how to take a lab result or idea all the way to a specific cancer treatment or intervention. The pathway describes each step in the process and every key decision that needs to be made. The end result of following these "directions" is either a new cancer discovery that can be applied to a patient or a productive failure. Either way the research impacts the the patient. Either they have a new treatment or preventative measure or we have proven that the new discovery does not work and should be abandoned.
Now, from a patient perspective this may seem nonsensical. Well, of course, this is the way they should be thinking. Sadly, in reality it is not. The bulk of research is done with no end goal in mind. Research is done as a discreet project. It is chosen and pursued because it was what was funded. Finally, it is done regardless of how the science ultimately effects the patient. Read that again - most research is done without regard of what impact it will have on the cancer or the patient. The NCI has stepped in and said we no longer want to fund discreet projects. If you want us to fund your research you have to show us where it fits within these pathways and how you plan to impact patients. For many researchers this is a completely different way of thinking about cancer research.
In fact, this was our job at the NCI. We were their to get researchers thinking about the patients. We asked questions to get them thinking about how their research will get to patients. What are the challenges? What are the steps? What resources do they need to get to the next step. How is their discovery going to make a difference in a cancer patients life.
Ironically much of the research presented had already reached the end of the pathway. A perfect example is the work of the NANT. This is why their work is held in such high regard. They are very good at translating basic research into clinical therapies. Overall, I found that pediatric researchers were much more adept at this process. I think this is largely due to their lack of patients and resources. They have no choice. But, then again, this could just be my bias showing.
Will these new pathways speed up our search for a cure? Well, yes and no. If the pathways are actually referred to and implemented I think it is very likely that research could speed up. Bottom-line, more people will be aware of the steps necessary to get their discoveries into the clinic. This is likely to get them addressing road blocks more quickly. For example, if they now know that they will face intellectual property issues or IRB issues in a future step they can start preparing for them early. If they believe their research will only get funded if their is an efficient plan to get the discovery into the clinic, then they will make sure is has one. These simple steps can literally shave months, years, and decades off of some projects. The pathways also encourage (rely on) collaboration which I think could be extremely helpful in speeding the process. If we are going to move more quickly we have to break down the walls. We have to get the researchers talking and collaborating. We have to tear down the research silos.
There are still problems though. While it is great that we now have the recipe for success. We are still lacking some critical ingredients. For example, while the NCI can demand that the research they fund fits within these pathways and is translational in nature they don't have any authority to do so. It turns out that the NIH actually sets the standards and guidelines for what research is funded and how it is evaluated. Until the guidelines change, there is little meat behind this idea. There is no carrot on the stick. Right now, research is not funded on whether it can translate into the clinic. It is funded on the merit of the research as it sits alone. Until researchers are funded (and only funded) by how their research fits into the translational picture I fear they will continue to work the same way.
The good news is that there are grants that are starting to appear and the carrots are significant. The NCI has created a mechanism to help move truly translational research forward. Although there are just a few awards to date I truly believe that it is the wave of the future. If you want to get funded by the NCI you are going to have to show how your research will translate into the clinic. In this sense, they are hastening a significant change.
I was honestly, and pleasantly, surprised at how much purpose the NCI has.
Tuesday, November 11, 2008
Waiting, waiting, and waiting
Good morning! Well, if you are waiting for some results you are much like me - still waiting. This is always such an issue. The waiting is the worst. And, universally, it becomes much, much worse when you have been told you would hear something and you still have not. It is at that point in time when the paranoia starts to set in and the incessant questioning begins. "Why have they not called? They said they would. Did they find some thing? They must have." From that point the line of mental questioning and the possibilities of what could be wrong grow exponentially. This is a lesson for all of you future (or current) oncologists. The waiting is torturous and many, many times worse than the reality. In fact, I would always put it in this perspective - "If it were your child, would you want to know?" I think you will find that you would almost never, ever want to wait. This is, of course, my opinion, but I know that it is one that is certainly shared by most if not all of the parents I know.
So, we wait.
My purpose, however, plugs on.
So, we wait.
My purpose, however, plugs on.
Monday, November 10, 2008
The Big Day
Well, here we are at Cook's in the outpatient surgery wating area. We arrived at 6:30 AM and have gone through all of the usual sequences of events. Unfortunately, it seems like everyone is running a little late so they did not take her back until about 8:20 AM. This has me guessing that we will probably know something in about 30 - 45 minutes assuming all goes well. All in all, this has gone pretty smoothly. I certainly can't complain. As usual, I am just anxious to get to the bottom of all of this.
I should also tell you that my trip to Washington, D.C. for NCI Translates was an incredible experience. I am not really in the mood to go into the details, right now (I have Sydney on my mind.) However, I will tell you that has been transformational for me. In some areas it has solidified my thinking regarding neuroblastoma research and in some other ways I have been enlightened to new ideas and perspectives. I can tell you this. I viewed research that spanned just about every cancer. This event was representative of the entire cancer population. I can also tell you that, if anything, neuroblastoma was over represented. Yes, you heard me. Neuroblastoma research projects accounted for anywhere from 5 to 15% of the abstracts that appeared in each of the sections in which I participated. That is a huge number considering the fact that this was not even a pediatric population that we were looking at. This was all cancer - breast, lung, prostate - you name it. Our neuroblastoma research is something to be proud of. Our investigators are clearly leaders in the cancer world. Ironically, Sydney's vaccine trial was a big subject at the meeting. I actually met with some of the researchers behind her study. It was a shock for both me and them.
Well, more later. My nervousness is now taking priority over my writing so I think I am going to focus back on my anxiety now.
I have purpose on the brain.
I should also tell you that my trip to Washington, D.C. for NCI Translates was an incredible experience. I am not really in the mood to go into the details, right now (I have Sydney on my mind.) However, I will tell you that has been transformational for me. In some areas it has solidified my thinking regarding neuroblastoma research and in some other ways I have been enlightened to new ideas and perspectives. I can tell you this. I viewed research that spanned just about every cancer. This event was representative of the entire cancer population. I can also tell you that, if anything, neuroblastoma was over represented. Yes, you heard me. Neuroblastoma research projects accounted for anywhere from 5 to 15% of the abstracts that appeared in each of the sections in which I participated. That is a huge number considering the fact that this was not even a pediatric population that we were looking at. This was all cancer - breast, lung, prostate - you name it. Our neuroblastoma research is something to be proud of. Our investigators are clearly leaders in the cancer world. Ironically, Sydney's vaccine trial was a big subject at the meeting. I actually met with some of the researchers behind her study. It was a shock for both me and them.
Well, more later. My nervousness is now taking priority over my writing so I think I am going to focus back on my anxiety now.
I have purpose on the brain.
Friday, November 7, 2008
Preoperative success
Good morning. Well, before I head off to Washington D.C. for the NCI Translates meeting I wanted to give everyone a brief update on Sydney. This will probably be the last time you hear from me until after her procedure early Monday morning. Yesterday we took Sydney to the clinic for her preoperative check up. I am happy to say that she was found to be perfectly healthy and normal. As far as the whole neuroblastoma thing goes, she appears to be asymptomatic. Her CBC was normal and everything checked out. There were no outward signs of something amiss. In my book, that is a vote of confidence going into this surprise set of bone marrows on Monday.
Based on my email many people seem to be very curious as to what I really think about this whole strange lab result that we sent to Texas Children's. Truth be told, I still do not know what to make of it. I am anxious to confirm that it is not neuroblastoma that is causing this rather strange laboratory finding. I still don't think it is the cause. It just doesn't make sense to me. Although, I certainly understand that we have to rule out the possibility that the vaccine is doing exactly what it was hoped it would do:) I still think it is probably related to something else, perhaps a virus of some sort. A flair up of EBV would probably be the most likely catalyst but I am still suspecting something else at play. I have no medical rationale behind that statement. This is my gut feeling at play. Something is out of whack. I just have not put my finger on it as of yet. I know I don't have all of the answers but I also suspect that I don't have all of the facts as well. There you go. See, I know absolutely nothing.
Sydney and I had a pretty good time in the clinic as usual. We started with working on her vocabulary. She hates this activity. I would think pulling teeth would be higher up on her to do list. There was lots of fighting but I tried to keep her entertained as we struggled through the cards. Something must have worked because she came home from school later that day with a 101 on her test. However, I know full well that she won't attribute her score to any of the time that we spent in the waiting room at the clinic. It was not long before she grew tired of vocabulary and was off to creating crayon masterpieces. This worked out well as I had roughly 30 email messages waiting for me on my iPhone. After a short while we were back to clinic stuff. We had the opportunity to meet the new nurse practitioner. It was quite a treat. Angi is clever and had no problem dealing with the Dungans (Well, I guess I should say Dungan - singular. Sydney and Lynley are both pretty easy to deal with in general.) I was surprised that they would throw her to the sharks so early in her career. None the less, she handled us aptly - so well, in fact, that we had no need to see an oncologist. I was not sure whether Dr. Howrey was glad that we left without seeing him or a bit disappointed. Knowing what a headache we can be I think he was probably secretly relieved.
Finally, I want to thank everyone for their kind messages. I think I received around 20 email and messages yesterday from those that follow the diary. I genuinely appreciate your kind words. I don't know that I am dealing with it any better (not that it matters how I feel). It is just that having a 3 year old of my own I can't shake the imagery out of my mind. I keep thinking of Ainsley in that position. It makes me physically sick. I am happy to say, however, that she is now surrounded by our loving family and seems to be coping very well especially given the awful circumstances.
Well I had best be off. I have exactly 31 medical abstracts to reread today. That is a lot of medical jargon to absorb at 5:00 AM in the morning.
Stacks of purpose await.
Based on my email many people seem to be very curious as to what I really think about this whole strange lab result that we sent to Texas Children's. Truth be told, I still do not know what to make of it. I am anxious to confirm that it is not neuroblastoma that is causing this rather strange laboratory finding. I still don't think it is the cause. It just doesn't make sense to me. Although, I certainly understand that we have to rule out the possibility that the vaccine is doing exactly what it was hoped it would do:) I still think it is probably related to something else, perhaps a virus of some sort. A flair up of EBV would probably be the most likely catalyst but I am still suspecting something else at play. I have no medical rationale behind that statement. This is my gut feeling at play. Something is out of whack. I just have not put my finger on it as of yet. I know I don't have all of the answers but I also suspect that I don't have all of the facts as well. There you go. See, I know absolutely nothing.
Sydney and I had a pretty good time in the clinic as usual. We started with working on her vocabulary. She hates this activity. I would think pulling teeth would be higher up on her to do list. There was lots of fighting but I tried to keep her entertained as we struggled through the cards. Something must have worked because she came home from school later that day with a 101 on her test. However, I know full well that she won't attribute her score to any of the time that we spent in the waiting room at the clinic. It was not long before she grew tired of vocabulary and was off to creating crayon masterpieces. This worked out well as I had roughly 30 email messages waiting for me on my iPhone. After a short while we were back to clinic stuff. We had the opportunity to meet the new nurse practitioner. It was quite a treat. Angi is clever and had no problem dealing with the Dungans (Well, I guess I should say Dungan - singular. Sydney and Lynley are both pretty easy to deal with in general.) I was surprised that they would throw her to the sharks so early in her career. None the less, she handled us aptly - so well, in fact, that we had no need to see an oncologist. I was not sure whether Dr. Howrey was glad that we left without seeing him or a bit disappointed. Knowing what a headache we can be I think he was probably secretly relieved.
Finally, I want to thank everyone for their kind messages. I think I received around 20 email and messages yesterday from those that follow the diary. I genuinely appreciate your kind words. I don't know that I am dealing with it any better (not that it matters how I feel). It is just that having a 3 year old of my own I can't shake the imagery out of my mind. I keep thinking of Ainsley in that position. It makes me physically sick. I am happy to say, however, that she is now surrounded by our loving family and seems to be coping very well especially given the awful circumstances.
Well I had best be off. I have exactly 31 medical abstracts to reread today. That is a lot of medical jargon to absorb at 5:00 AM in the morning.
Stacks of purpose await.
Thursday, November 6, 2008
Sad, sad, sad
You will have to bear with my lack of a response this morning. In the midst of everything that is going on with Sydney we have had a horrible death in the family which has left my gut churning. I have had this feeling before and know it all to well - overwhelming emptiness, sadness, and despair. It turns out that one of my cousins passed away at home. This is bad in and of itself but it becomes much worse. He was also a single parent of a 3 year old child who was home alone with him. It took several days before his body was discovered by his sister. The 3 year old child was dehydrated but survived on some Halloween candy that she had found around the house. I can't think of anything more sad.
I don't have anything else to say.
My purpose is hard to grasp today although I desperately feel the need to hug and hold my children.
I don't have anything else to say.
My purpose is hard to grasp today although I desperately feel the need to hug and hold my children.
Wednesday, November 5, 2008
A Translational Tangent to the NCI
Everything is scheduled. I heard from Dr. Eames on several occasions yesterday. Sydney is all set up for her bone marrow aspiration and biospy first thing on Monday morning. She will begin the process with a clinic visit tomorrow morning for a preoperative checkup. Dr. Eames was nice enough to coordinate this for me as I will be travelling from Friday through Sunday to Washington, D.C.
I am serving as an advocate for the NCI at the NCI Translates convention. It should be a very, very interesting trip and I am really looking forward to it. The whole purpose of this meeting is to evaluate the NCI's entire portfolio of cancer research and to prioritize it based on how well it can be "translated" into meaningful treatments. The entire purpose of this meeting is to accelerate translational cancer research. Our job as advocates is to bring our consumer perspective into the process. Their belief is that our input will help them identify and focus on what is really important and provide the necessary sense of urgency to move forward quickly. It is also the hope that we will bring relationships and knowledge from the outside of both NCI and non-NCI related activities into the discussion.
I often see and hear people complain that people aren't doing enough when it comes to cancer research. I have seen people blame the COG, the NANT, the NCI and even individual institutions like Sloan Kettering and St. Judes. I have heard people claim that the doctors and researchers don't care - that they are only in it for their own intellectual pursuits. I have heard many claim that they don't care about the children. I am here to put my foot down and to say that is WRONG. It simply isn't the case. I have met many researchers and physicians over the years (1000s) and I am yet to meet one single one that was not passionate about creating a change for our children - even a few that did not even do research in pediatrics. The problem is not the people. They are committed - at every level. I have been advocating for years and with the exception of one single issue (which I see both sides of) I have seen constant change as the medical community has made changes to move faster and more efficiently. There are problems with every organization but most of it has to do with bureaucracy and less to do with research. They are working hard to create change at every level.
Are there problems?
ABSOLUTELY! There is lack of funding? And, in our case, patients? There are political pressures extraordinaire. There are issues (in our eyes) of prioritization. There are problems with the pharmaceutical industry and the insurance industry. And, don't forget what a mess the legal system has introduced into all of this. But, don't doubt for a single second that there aren't thousands of well respected scientists and physicians that are out there fighting for our kids everyday trying to make a difference where they can.
Wow, so that was a tangent. Sorry, I am a passionate guy.
That is what purpose does to you. Bring it on.
I am serving as an advocate for the NCI at the NCI Translates convention. It should be a very, very interesting trip and I am really looking forward to it. The whole purpose of this meeting is to evaluate the NCI's entire portfolio of cancer research and to prioritize it based on how well it can be "translated" into meaningful treatments. The entire purpose of this meeting is to accelerate translational cancer research. Our job as advocates is to bring our consumer perspective into the process. Their belief is that our input will help them identify and focus on what is really important and provide the necessary sense of urgency to move forward quickly. It is also the hope that we will bring relationships and knowledge from the outside of both NCI and non-NCI related activities into the discussion.
I often see and hear people complain that people aren't doing enough when it comes to cancer research. I have seen people blame the COG, the NANT, the NCI and even individual institutions like Sloan Kettering and St. Judes. I have heard people claim that the doctors and researchers don't care - that they are only in it for their own intellectual pursuits. I have heard many claim that they don't care about the children. I am here to put my foot down and to say that is WRONG. It simply isn't the case. I have met many researchers and physicians over the years (1000s) and I am yet to meet one single one that was not passionate about creating a change for our children - even a few that did not even do research in pediatrics. The problem is not the people. They are committed - at every level. I have been advocating for years and with the exception of one single issue (which I see both sides of) I have seen constant change as the medical community has made changes to move faster and more efficiently. There are problems with every organization but most of it has to do with bureaucracy and less to do with research. They are working hard to create change at every level.
Are there problems?
ABSOLUTELY! There is lack of funding? And, in our case, patients? There are political pressures extraordinaire. There are issues (in our eyes) of prioritization. There are problems with the pharmaceutical industry and the insurance industry. And, don't forget what a mess the legal system has introduced into all of this. But, don't doubt for a single second that there aren't thousands of well respected scientists and physicians that are out there fighting for our kids everyday trying to make a difference where they can.
Wow, so that was a tangent. Sorry, I am a passionate guy.
That is what purpose does to you. Bring it on.
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