Well, judging by the email I received yesterday, I can see that many of you feared for our lives and/or sanity. The good news is that the kiddos finally got out of the house and made their way to Pump it Up for several hours of controlled and, most importantly, tiring chaos. All in all, the kiddos, had a pretty good day. There was no bloodshed and we were all pretty effective at nabbing any questionable behavior in the bud. I think this may be the key.
We have to catch them before they reach the "red zone." Those of you that are Cesar Milan fans will know exactly what I mean but, for you others, here is the gist of it. When you are walking a dog and he starts going nuts barking and trying to get to another dog, it is very difficult (at that moment) to get them to calm down. For the most part you are left trying to hold on for dear life. However, had you tried to correct the behavior the moment the dog showed any inkling of interest in the other dog you would be much more successful. In other words, you have to correct the behaviour before the excitement level rises so high that they can't calm down.
I know this may sound strange but it is absolutely true. If I have seen it once in dogs, I have seen it a thousand times. You just have to catch them before they get out of control. If you can do that. You can be successful. You can achieve the holy grail of good and consistent dog behavior.
The problem with this method is correcting the behaviour early enough. You have to be on your toes. You have to pay attention. There is a limited window and timing is critical for success. This, too, seems to be an issue with the kiddos and very clearly my problem. They never register on my radar until they are out of control. However, when we catch them a bit earlier, we seem to achieve regular success.
The trick is not letting life get in the way of our parenting. That is not always easy.
However, that is what purpose is all about. What is really important?
Friday, July 31, 2009
Thursday, July 30, 2009
The Happy Trojan Horse of Twerphood
It has rained much of the week here in beautiful Fort Worth, Texas. Yesterday was pretty clear with the exception of a few sprinkles. Yet, the kiddos still elected not to go swimming or play outside. This, has left them inside, doing the same things, over and over.
A new storm is brewing but, for a change, it is inside the house.
Our kiddos are going stir crazy.
Oh, I can see our mothers now - all happy and giddy. We are finally getting our just desserts. In their eyes, we are getting what we deserve and certainly no less than we gave. That is fine. But, don't think of us. Think of poor Miss Claudia who has been thrown to the hungry wolvelets. We are blood. We have to put up with it. Miss Claudia, luckily is not. And, we aren't paying her nearly enough. ( I hope she doesn't read that.)
They are taking over.
If it wasn't so embarrassing, this whole situation would truly be hilarious. My kiddos aren't bad. In fact, they are generally pretty great. As a threesome they are great fun. I don't know that I have necessarily ever seen a closer group of siblings. They love playing together. The problem is that they love it too much. It does not take long before the love turns to laughter, the laughter to chaos, and then, somehow, to violence. It is difficult to explain. You have these kiddos having a blast, giggling absolutely uncontrollably and, the next thing you know, it erupts into all out war. I can't say that I have ever experienced anything like it. It is day and night. It is the Trojan Horse of Twerphood.
The truly unfortunate part of all of this is that the giggleness seems to lead to obstinate behaviors. It becomes 'okay' not to list to your superiors. It seems funny to say 'no' when asked to settle down. It is as if they have swallowed some kind of giggle juice laced with a hint of bad kid. The next thing you know my wonderful twerps have turned into miscreant offspring.
We have to get them out of the house. We have to show them the light.
Purpose, give us strength.
A new storm is brewing but, for a change, it is inside the house.
Our kiddos are going stir crazy.
Oh, I can see our mothers now - all happy and giddy. We are finally getting our just desserts. In their eyes, we are getting what we deserve and certainly no less than we gave. That is fine. But, don't think of us. Think of poor Miss Claudia who has been thrown to the hungry wolvelets. We are blood. We have to put up with it. Miss Claudia, luckily is not. And, we aren't paying her nearly enough. ( I hope she doesn't read that.)
They are taking over.
If it wasn't so embarrassing, this whole situation would truly be hilarious. My kiddos aren't bad. In fact, they are generally pretty great. As a threesome they are great fun. I don't know that I have necessarily ever seen a closer group of siblings. They love playing together. The problem is that they love it too much. It does not take long before the love turns to laughter, the laughter to chaos, and then, somehow, to violence. It is difficult to explain. You have these kiddos having a blast, giggling absolutely uncontrollably and, the next thing you know, it erupts into all out war. I can't say that I have ever experienced anything like it. It is day and night. It is the Trojan Horse of Twerphood.
The truly unfortunate part of all of this is that the giggleness seems to lead to obstinate behaviors. It becomes 'okay' not to list to your superiors. It seems funny to say 'no' when asked to settle down. It is as if they have swallowed some kind of giggle juice laced with a hint of bad kid. The next thing you know my wonderful twerps have turned into miscreant offspring.
We have to get them out of the house. We have to show them the light.
Purpose, give us strength.
Wednesday, July 29, 2009
Looking Outside In
Good morning! Ah, what a great night of sleep. I seriously think something may be wrong with me when I wake up at 3:45 AM and feel completely and utterly refreshed. None the less, I do. For me, yesterday was a busy day. Professionally, I have become involved with some pretty smart people with specialty in the non profit arena. Most specifically, they specialize in building non profit brands - I.e. Livestrong, the 3 Day, Team in Training, etc. One of them is even writing a book. These are clever people. I understand the concepts, the technology, and the know how to create something. I can build. I can do that. I can even be somewhat successful. But how, how, how do you create something that has truly national impact? How do you make neuroblastoma a common household name? I know how to make something big. How do you make it gigantic? I know where I want to start - and - I know where I want to end. How do I get there? It is for this reason that I have tried to begin to understand the strategic steps necessary to get where I want the name 'neuroblastoma' to be.
It is fun to dream and envision. It is invigorating. It has gotten my mind racing and I am ready to start pulling all of the pieces of the puzzle together. There are, very definitely, pieces I do not have. However, for the first time, in a very long time I can envision them and I can see how they can come together. This has brought me to the realization that stepping outside and looking back inside is absolutely critical. It can provide new insights and make you realize that the boundaries and obstacles that you once thought were there are, in fact, non existent.
It is funny, as the kids have gotten older, I have noticed the same thing with them. I am often frustrated by the chaos. It is very easy to become wrapped up in it. You can be very calm one moment and then it does not take but 1 or 2 fights from the twerp peanut gallery before you, yourself, become swallowed up in the nuttiness. From that perspective it is very hard to tread water. However, stepping outside of the situation and looking back in often gives you insight and the tools to accomplish the end goal - non loopy kiddos in a non deranged world.
Moral of the day - Don't forget to take a deep breath and look at your life from the outside.
Your purpose becomes clearer.
It is fun to dream and envision. It is invigorating. It has gotten my mind racing and I am ready to start pulling all of the pieces of the puzzle together. There are, very definitely, pieces I do not have. However, for the first time, in a very long time I can envision them and I can see how they can come together. This has brought me to the realization that stepping outside and looking back inside is absolutely critical. It can provide new insights and make you realize that the boundaries and obstacles that you once thought were there are, in fact, non existent.
It is funny, as the kids have gotten older, I have noticed the same thing with them. I am often frustrated by the chaos. It is very easy to become wrapped up in it. You can be very calm one moment and then it does not take but 1 or 2 fights from the twerp peanut gallery before you, yourself, become swallowed up in the nuttiness. From that perspective it is very hard to tread water. However, stepping outside of the situation and looking back in often gives you insight and the tools to accomplish the end goal - non loopy kiddos in a non deranged world.
Moral of the day - Don't forget to take a deep breath and look at your life from the outside.
Your purpose becomes clearer.
Tuesday, July 28, 2009
A New Neuroblastoma Vaccine Available
Last week a new vaccine trial opened for children with neuroblastoma. While I am yet to form an opinion on this particular option, I thought it was certainly worthy of mention. It may very well be an interesting option for you to discuss with your child's oncologist. But, act quickly, this one will likely be gone fast.
The trial "A Phase 1 Study to Determine the Immunologic Effects of a MAGE- A1, MAGE- A3, NY-ESO-1 Vaccine in Patients With High Risk Neuroblastoma, Osteogenic Sarcoma, and Rhabdomyosarcoma" is being offered at Penn State Hershey Children's Hospital. The purpose of this phase 1 study is to determine the safety and immunological effects of a new antibody targeted dendritic cell vaccine. The hypothesis behind the vaccine is that it could reduce the risk of relapse.
The study is in two parts. First, each patient will be screened for the presence of 3 antigens, MAGE-A1, MAGE-A3, and NY-ESO-1. These antigens can be found in fairly significant quantities on neuroblastoma, rhabdomyosarcoma, and osteogenic sarcoma cells. 70% of neuroblastoma tumors will express at least one of these antigens. Those testing positive for one or more of these antigens will then be consented for the treatment phase. An individualized vaccine will be developed and administered using your child's own dendritic cells. After about 1 month, each patient will receive a series of 3 vaccines containing 3,000,000-5,000,000 peptide pulsed dendritic cells at two week intervals. Prior to injection they will also receive Imiquimod, a topical cream, which is believed to help the immune cells travel to the tumor.
Understanding how tumor cell antigens and dendritic cell vaccines work together is a bit of a complicated subject. Essentially, dendritic cells break the antigens on the cancer cell surfaces into smaller pieces. The dendritic cells then act as most-wanted posters for the immune system, displaying those antigen pieces to the killer T cells. To make a dendritic cell vaccine, scientists extract some of the patient's dendritic cells and use immune cell stimulants to reproduce large amounts of dendritic cells in the lab. These dendritic cells are then exposed to antigens from the patient's cancer cells. This combination of dendritic cells and antigens is then injected into the patient, and the dendritic cells work to program the T cells, hopefully, forming an attack against the tumor cells.
Most important to any family of a child with neuroblastoma, however, are the questions of:
More information and contact information on this trial can be found here:
http://clinicaltrials.gov/ct2/show/NCT00944580
The trial "A Phase 1 Study to Determine the Immunologic Effects of a MAGE- A1, MAGE- A3, NY-ESO-1 Vaccine in Patients With High Risk Neuroblastoma, Osteogenic Sarcoma, and Rhabdomyosarcoma" is being offered at Penn State Hershey Children's Hospital. The purpose of this phase 1 study is to determine the safety and immunological effects of a new antibody targeted dendritic cell vaccine. The hypothesis behind the vaccine is that it could reduce the risk of relapse.
The study is in two parts. First, each patient will be screened for the presence of 3 antigens, MAGE-A1, MAGE-A3, and NY-ESO-1. These antigens can be found in fairly significant quantities on neuroblastoma, rhabdomyosarcoma, and osteogenic sarcoma cells. 70% of neuroblastoma tumors will express at least one of these antigens. Those testing positive for one or more of these antigens will then be consented for the treatment phase. An individualized vaccine will be developed and administered using your child's own dendritic cells. After about 1 month, each patient will receive a series of 3 vaccines containing 3,000,000-5,000,000 peptide pulsed dendritic cells at two week intervals. Prior to injection they will also receive Imiquimod, a topical cream, which is believed to help the immune cells travel to the tumor.
Understanding how tumor cell antigens and dendritic cell vaccines work together is a bit of a complicated subject. Essentially, dendritic cells break the antigens on the cancer cell surfaces into smaller pieces. The dendritic cells then act as most-wanted posters for the immune system, displaying those antigen pieces to the killer T cells. To make a dendritic cell vaccine, scientists extract some of the patient's dendritic cells and use immune cell stimulants to reproduce large amounts of dendritic cells in the lab. These dendritic cells are then exposed to antigens from the patient's cancer cells. This combination of dendritic cells and antigens is then injected into the patient, and the dendritic cells work to program the T cells, hopefully, forming an attack against the tumor cells.
Most important to any family of a child with neuroblastoma, however, are the questions of:
- Will it work? and
- What are the risks?
More information and contact information on this trial can be found here:
http://clinicaltrials.gov/ct2/show/NCT00944580
Monday, July 27, 2009
Batteries Recharged
Good morning! Wow, what a relaxing weekend. I can't always say that but, boy, this one sure was nice. It was good too. I needed a break. The other good news is that I did not even have to use my big mean daddy voice and the kiddos had a great time as well. And guess what, no chaos. They were much better the last few days of the week and spent the weekend in good spirits. Whether this is the calm before the storm is yet to be elucidated but we sure had a blast.
Friday night was busy. Graham had a birthday party where he was reunited with many of his old classmates. The party was held at one of those inflatable jumping wonderlands. He successfully jumped, hopped, ran and slid to his heart's content. By the end, he had been successfully drained of energy and that may, in fact, be the reasoning for such superb behavior that night.
Sydney spent Friday night at a sleepover with her best friend Jillian. Ainsley spent the early evening with mom at home. Eventually, we were reunited and had a nice dinner for four. Hmmm. Now I am starting to realize why this weekend was so easy. For half of it we only had four kiddos. I find it interesting that it is only now that I realized that. Wow, my old age is starting to show.
Saturday night we found the twerplets all back together. Lynley was feeling under the weather so I took the kiddos out to Mama's pizza with the Robertson's. The kiddos had fun playing the video games while the adults enjoyed some relaxing conversation. Sydney was sure to tell me on the way home that she stilled loved Truman. It was not in those exact words but, it was very clear that was her meaning. I knew I should have started her in Tae Kwon Do at an earlier age! I changed the subject as quickly as possible and made it home quickly to watch a movie and go to bed. Harry Potter was the movie of the night and I was hopeful it would successfully drain any romanticism that she was feeling.
Sunday was another relaxing day. We visited the duck pound, walked the dogs in the park and spent some time swimming. Later, Sydney would spend some time over at DeeDee's house. All in all, it was just a lackadaisical day at the Dungan's. I think we are ready to face another week.
Our purpose has been rejuvenated.
Friday night was busy. Graham had a birthday party where he was reunited with many of his old classmates. The party was held at one of those inflatable jumping wonderlands. He successfully jumped, hopped, ran and slid to his heart's content. By the end, he had been successfully drained of energy and that may, in fact, be the reasoning for such superb behavior that night.
Sydney spent Friday night at a sleepover with her best friend Jillian. Ainsley spent the early evening with mom at home. Eventually, we were reunited and had a nice dinner for four. Hmmm. Now I am starting to realize why this weekend was so easy. For half of it we only had four kiddos. I find it interesting that it is only now that I realized that. Wow, my old age is starting to show.
Saturday night we found the twerplets all back together. Lynley was feeling under the weather so I took the kiddos out to Mama's pizza with the Robertson's. The kiddos had fun playing the video games while the adults enjoyed some relaxing conversation. Sydney was sure to tell me on the way home that she stilled loved Truman. It was not in those exact words but, it was very clear that was her meaning. I knew I should have started her in Tae Kwon Do at an earlier age! I changed the subject as quickly as possible and made it home quickly to watch a movie and go to bed. Harry Potter was the movie of the night and I was hopeful it would successfully drain any romanticism that she was feeling.
Sunday was another relaxing day. We visited the duck pound, walked the dogs in the park and spent some time swimming. Later, Sydney would spend some time over at DeeDee's house. All in all, it was just a lackadaisical day at the Dungan's. I think we are ready to face another week.
Our purpose has been rejuvenated.
Friday, July 24, 2009
Does fun always have to end bad?
Well, well, well. With my trip out of town, I have been remiss in keeping everyone updated on the twerplets. You may recall that I last left them with the title of 'offspring.' It had not taken them very much time to revert to their old ways. For the most part, it was not that they were trying to be bad. In fact, often, it is just because they are having too much fun together and they just lose complete and utter control. They begin to make bad decisions. At the height of their chaos someone always seems to get hurt and then the screaming, yelling, and blaming begins. It is amazing how quickly this transpires. The fact remains: they are nuts. They push the envelope too far.
This eventually leads to several poor choices and bad behaviours.
Let me provide an example.
Graham is fundamentally a great little boy. Intensely great. He is kind, caring, and sweet. In the category of niceness I would put him up against any child and most religious leaders. He is just genuinely a great miniature human being.
Can you tell, I love my Dudely.
Anyway, even this miniature mountain of humble sweetness, is susceptible to the ways of kiddo crazy chaos. Furthermore, when this happens, there is little that can be done to turn the tide before it becomes unmanageable.
My hypothesis, at this point, is this: Children having too much fun make very poor decisions - even when they are great kiddos.
Journey with me.
Not to long ago, last week in fact, we were all at Tae Kwon Do. You may remember that one of the reasons that my kiddos are in Tae Kwon Do is because of the discipline. That still rings true. Their master, Master Adrian, is fierce. Not only is she an excellent instructor but she is also a very accomplished athlete. After all, she was a U.S. Open Gold Medalist. This is one tough teacher and not one that you would not want to face in a dark alley.
However, Master Adrian is great with the kids. She seems to know the balance of fun and discipline and can always wrangle the kiddos back into order when needed. Yet, she also has a playful side and can get them to giggle when they need it. During class she even sometimes spars with them. This is a good exercise for the kiddos as she knows exactly what moves to make to get them to learn how to apply the various punches and kicks to a combat situation. While she always lets them score, she also ultimately always wins. The winning point usually comes in dramatic fashion as she ends it with a combination that chases them back into their position in line at the end of the mat. Luckily, Graham is fast (he runs a bit like Forest Gump and has every bit of speed) and can usually make it off the mat before she scores her last point. He knows it is coming and he makes a run for it. Yes, Graham has prey instinct down. He is generally very proud of himself for outrunning the barage of kicks and spins and it always ends in giggles.
Well, last week, right after Master Adrian worked with him and chased him off the mat, Graham ended in his usual fit of giggles. He was having great fun. As Master Adrian turned away and headed back to the front of the class Graham thought it would be a great time to throw a roundhouse kick right into her back side.
Yes, my son (the yellow belt) decided to give his instructor (an accomplished national champion second degree blackbelt) a kick to the posterior.
I could not believe it. In fact, we could not believe it so much that we all busted out in laughter. We hid it from his eyes but I must admit it was likely the funniest thing I had ever seen. Even Master Adrian was having difficulty keeping a straight face as she towered over Graham's sweet little body. She grabbed him up in one fell swoop. She feigned pummeling him to the ground. He just continue to giggled uncontrollably.
Lynley and I, of course, told him never to do that again. Away from his prying eyes, we all had a good chuckle, Master Adrian included.
This, however, is an excellent, supportive example of the type of behavior that somehow is released from my kiddos brains. I swear they were not taught this way.
It is the fun. It is the laughter. It always ends in bad decisions.
I haven't figured out exactly what to do.
I wish I had a magic purpose wand.
This eventually leads to several poor choices and bad behaviours.
Let me provide an example.
Graham is fundamentally a great little boy. Intensely great. He is kind, caring, and sweet. In the category of niceness I would put him up against any child and most religious leaders. He is just genuinely a great miniature human being.
Can you tell, I love my Dudely.
Anyway, even this miniature mountain of humble sweetness, is susceptible to the ways of kiddo crazy chaos. Furthermore, when this happens, there is little that can be done to turn the tide before it becomes unmanageable.
My hypothesis, at this point, is this: Children having too much fun make very poor decisions - even when they are great kiddos.
Journey with me.
Not to long ago, last week in fact, we were all at Tae Kwon Do. You may remember that one of the reasons that my kiddos are in Tae Kwon Do is because of the discipline. That still rings true. Their master, Master Adrian, is fierce. Not only is she an excellent instructor but she is also a very accomplished athlete. After all, she was a U.S. Open Gold Medalist. This is one tough teacher and not one that you would not want to face in a dark alley.
However, Master Adrian is great with the kids. She seems to know the balance of fun and discipline and can always wrangle the kiddos back into order when needed. Yet, she also has a playful side and can get them to giggle when they need it. During class she even sometimes spars with them. This is a good exercise for the kiddos as she knows exactly what moves to make to get them to learn how to apply the various punches and kicks to a combat situation. While she always lets them score, she also ultimately always wins. The winning point usually comes in dramatic fashion as she ends it with a combination that chases them back into their position in line at the end of the mat. Luckily, Graham is fast (he runs a bit like Forest Gump and has every bit of speed) and can usually make it off the mat before she scores her last point. He knows it is coming and he makes a run for it. Yes, Graham has prey instinct down. He is generally very proud of himself for outrunning the barage of kicks and spins and it always ends in giggles.
Well, last week, right after Master Adrian worked with him and chased him off the mat, Graham ended in his usual fit of giggles. He was having great fun. As Master Adrian turned away and headed back to the front of the class Graham thought it would be a great time to throw a roundhouse kick right into her back side.
Yes, my son (the yellow belt) decided to give his instructor (an accomplished national champion second degree blackbelt) a kick to the posterior.
I could not believe it. In fact, we could not believe it so much that we all busted out in laughter. We hid it from his eyes but I must admit it was likely the funniest thing I had ever seen. Even Master Adrian was having difficulty keeping a straight face as she towered over Graham's sweet little body. She grabbed him up in one fell swoop. She feigned pummeling him to the ground. He just continue to giggled uncontrollably.
Lynley and I, of course, told him never to do that again. Away from his prying eyes, we all had a good chuckle, Master Adrian included.
This, however, is an excellent, supportive example of the type of behavior that somehow is released from my kiddos brains. I swear they were not taught this way.
It is the fun. It is the laughter. It always ends in bad decisions.
I haven't figured out exactly what to do.
I wish I had a magic purpose wand.
Thursday, July 23, 2009
The world's greatest science ever!
Okay, so I have received a ton of email asking about the research I discussed while in Washington, D.C. Unfortunately, I signed a mountain of confidentiality agreements stating that I would not discuss it. The bottom line is this. I saw some incredibly interesting research that could have significant impact. Unfortunately, I also say some incredibly idiotic research. Yes, I said idiotic. And, if you know anything about me at all, you should know that I had no problem expressing my opinion at all. It actually made for some of the lighter moments in our discussions.
There were several proposals that presented some really flashy ideas - lasers, liposomes, and antibodies where my favorite. Unfortunately, for many of those, I did not see any significant impact on our lives. They were flashy. They were snazzy. In fact, they were really, really cool. Unfortunately, when you got right down to it they were completely useless to a child with neuroblastoma.
I sound bitter, don't I? Well, I don't mean to but let me give you a hypothetical example so you can understand. There were several proposals that fell into this category - again this is a hypothetical example.
A non surgical approach to removing neuroblastoma tumors with a laser.
Doesn't that sound cool? A laser that can successfully cut out and and evaporate a neuroblastoma tumor. Price tag - $2 million. Cheap considering the fact that you could now have surgeries - without surgery. No incision. No blood. No recovery. Magic!
Of course, this is what they would like for you to believe in the funding abstract. However, upon delving further, you would realize that this laser could only penetrate the skin to a depth of 1 centimeter at its maximum. So, in this sense, it may be great for the mice that they were testing it on. All of which had small tumors on the surface of the skin. Unfortunately, for child with neuroblastoma, a typical tumor of Sydney's size 5cm x 9cm, and located in a typical place (like the center of the abdomen); it would be completely and utterly worthless for children with neuroblastoma.
Like I said, really incredibly cool idea. Lasers are awesome.
Completely useless to children with neuroblastoma.
Ideas like this were at first met with excitement by many of the scientists. After all it was innovative. However, that was the reason that the clinicians and advocates were there - to gauge the impact on patients. We would get our point across and eventually it would be discovered that it was presented by a physician who specialized in skin cancer (a disease that would likely benefit from such an incredible tool) who, unfortunately, was only interested in getting a hold of some of the funding that was potentially set aside for neuroblastoma. I was amazed at the number of proposals which clearly utilized search and replace to insert the word neuroblastoma in for another disease in order to qualify.
Wow, all of that sounds really depressing. So, let me say that there was also a large group of truly innovative and meaningful proposals as well. Once again, there were several impressive collaborations - some from institutions that many would believe were at complete odds with each other. I was also impressed with the number of proposals which were focused on ideas that could truly increase efficacy while also reducing toxicity. Medical technology has come a long way and I was truly impressed by some of the innovative ways researchers were utilizing liposomes and antibodies to target therapy. There were voluminous examples.
I came away with two significant realizations. First, the clinical and patient experience are critical to making good funding decisions. I was amazed by the number of proposals with great science but little, if any, impact. In this way, I was also surprised by the number of proposals from scientific experts in the field which totally misunderstood the treatment of neuroblastoma. Second, I was amazed by how many of the titles and abstracts completely misrepresented the material that was actually found in the proposals. In many abstracts that include claims that were flat out false. There really should be some regulatory body for that. It was ridiculous. DId you notice my title to this entry. How does that make you feel? Cheated?
Overall it was a fun exercise and I walked away feeling like we made some very good decisions. I also believe that if our guidance is followed some very important and meaningful research will be making its way into our lives and the clinic.
Let's hope the DOD has purpose too.
There were several proposals that presented some really flashy ideas - lasers, liposomes, and antibodies where my favorite. Unfortunately, for many of those, I did not see any significant impact on our lives. They were flashy. They were snazzy. In fact, they were really, really cool. Unfortunately, when you got right down to it they were completely useless to a child with neuroblastoma.
I sound bitter, don't I? Well, I don't mean to but let me give you a hypothetical example so you can understand. There were several proposals that fell into this category - again this is a hypothetical example.
A non surgical approach to removing neuroblastoma tumors with a laser.
Doesn't that sound cool? A laser that can successfully cut out and and evaporate a neuroblastoma tumor. Price tag - $2 million. Cheap considering the fact that you could now have surgeries - without surgery. No incision. No blood. No recovery. Magic!
Of course, this is what they would like for you to believe in the funding abstract. However, upon delving further, you would realize that this laser could only penetrate the skin to a depth of 1 centimeter at its maximum. So, in this sense, it may be great for the mice that they were testing it on. All of which had small tumors on the surface of the skin. Unfortunately, for child with neuroblastoma, a typical tumor of Sydney's size 5cm x 9cm, and located in a typical place (like the center of the abdomen); it would be completely and utterly worthless for children with neuroblastoma.
Like I said, really incredibly cool idea. Lasers are awesome.
Completely useless to children with neuroblastoma.
Ideas like this were at first met with excitement by many of the scientists. After all it was innovative. However, that was the reason that the clinicians and advocates were there - to gauge the impact on patients. We would get our point across and eventually it would be discovered that it was presented by a physician who specialized in skin cancer (a disease that would likely benefit from such an incredible tool) who, unfortunately, was only interested in getting a hold of some of the funding that was potentially set aside for neuroblastoma. I was amazed at the number of proposals which clearly utilized search and replace to insert the word neuroblastoma in for another disease in order to qualify.
Wow, all of that sounds really depressing. So, let me say that there was also a large group of truly innovative and meaningful proposals as well. Once again, there were several impressive collaborations - some from institutions that many would believe were at complete odds with each other. I was also impressed with the number of proposals which were focused on ideas that could truly increase efficacy while also reducing toxicity. Medical technology has come a long way and I was truly impressed by some of the innovative ways researchers were utilizing liposomes and antibodies to target therapy. There were voluminous examples.
I came away with two significant realizations. First, the clinical and patient experience are critical to making good funding decisions. I was amazed by the number of proposals with great science but little, if any, impact. In this way, I was also surprised by the number of proposals from scientific experts in the field which totally misunderstood the treatment of neuroblastoma. Second, I was amazed by how many of the titles and abstracts completely misrepresented the material that was actually found in the proposals. In many abstracts that include claims that were flat out false. There really should be some regulatory body for that. It was ridiculous. DId you notice my title to this entry. How does that make you feel? Cheated?
Overall it was a fun exercise and I walked away feeling like we made some very good decisions. I also believe that if our guidance is followed some very important and meaningful research will be making its way into our lives and the clinic.
Let's hope the DOD has purpose too.
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