Today I am feeling much better about the state of the world. It is amazing what kind of an effect good kiddo behavior can have on you. Yesterday Graham and Ainsley went to the water park. This had been prearranged. Sydney, however, did not get to go. Her behavior had been so poor the day before that we elected not to let her. This was just one of many punishments on the list. She had been punished severely for her transgressions. She also lost many of her favorite toys. She spent the majority of the day in her room and was left out of just about everything she likes to do. Of course, these days of punishment (technically only about 28 hours) were also chock full of talking.
I still don't know what Sydney's issues are. I can tell you that she was the perfect picture of politeness and niceness yesterday. She clearly knows how to be good. Yet, I just don't understand how these episodes escalate into these screaming violent fits of rage. We need to learn how to recognize and how to turn it off before she boils over. Only then will we be able to teach her to do the same. To me it seems like it is relatively simple. We just have to learn when to grab the reigns and get her to snap back to reality. We have to catch it before the adrenalin really starts pumping all of this "illogic" through her brain.
So what is making her mad? Well, I don't know specifically. There is a pattern of her exhibiting this behaviour when she doesn't get what she wants. That is definitely part of the puzzle. There is another ingredient, however. Because, I can tell you for sure, she is usually not this way. She understands sharing. I am constantly amazed by her ability to share with her brother and sister. Furthermore, I can also ask her not to do something or tell her she can' do something and she is quite pleasant about it. There is some other trigger. Either these episodes are occurring because of a state of mind that she is already in or there is something that is adding fuel to the fire. I just don't know what it is.
I am happy to say, however, that yesterday was wonderful. She was a perfect princess. I will keep a close eye on her again today and look for clues. We will get to the bottom of this.
I am the purpose hunter.
Wednesday, July 23, 2008
Tuesday, July 22, 2008
Bad, bad girl
Good morning! Frankly, mine has not been so dandy. I have spent the last hour or so battling a laptop that is on it's last leg. It is not being very nice. This somehow seems fitting as I have a daughter that fits into the same category. In fact, she is not even just "not nice." I am going to have to put her into the category of "wicked." It does not take long to figure out that everything in the Dungan household is not all roses and sugar.
In the past, I have mentioned that we were having a power struggle between Sydney and Miss Claudia. Well, it has escalated. And when I say it has escalated I don't mean just a little bit. Sydney has resorted to turning into a maniac. Frankly, there have been many times in my life that I could not have been prouder of Sydney. So, I guess with the highs, come the lows. Right now, I could not be any more disappointed in her. Ordinarily, I would make a joke by implying that this is somehow related to chemotherapy but her behaviour is so bad that even that does not seem funny. There is screaming, name calling, and flailing arms and legs. It is awful.
Trust me, we have addressed it with punishment about as much as we can. I can't think of anything more that we can take away from her. Ultimately, I need to get to the bottom of whatever it is that is ailing her mind. Sydney is clearly angry. She clearly does not think something is fair. We have tried giving her more responsibility. We have tried to ensure that she is given age appropriate freedoms. All of which is failing - miserably!
So, today I don't have any answers. I just have a problem. I know we can figure it out. We just haven't done so yet.
It would be much easier to blame this on neuroblastoma.
Nobody said parenting would be easy.
That is why I've got purpose.
In the past, I have mentioned that we were having a power struggle between Sydney and Miss Claudia. Well, it has escalated. And when I say it has escalated I don't mean just a little bit. Sydney has resorted to turning into a maniac. Frankly, there have been many times in my life that I could not have been prouder of Sydney. So, I guess with the highs, come the lows. Right now, I could not be any more disappointed in her. Ordinarily, I would make a joke by implying that this is somehow related to chemotherapy but her behaviour is so bad that even that does not seem funny. There is screaming, name calling, and flailing arms and legs. It is awful.
Trust me, we have addressed it with punishment about as much as we can. I can't think of anything more that we can take away from her. Ultimately, I need to get to the bottom of whatever it is that is ailing her mind. Sydney is clearly angry. She clearly does not think something is fair. We have tried giving her more responsibility. We have tried to ensure that she is given age appropriate freedoms. All of which is failing - miserably!
So, today I don't have any answers. I just have a problem. I know we can figure it out. We just haven't done so yet.
It would be much easier to blame this on neuroblastoma.
Nobody said parenting would be easy.
That is why I've got purpose.
Monday, July 21, 2008
The best conference ever!
Good morning! So, you are going to have to bear with me. I slept in and I just woke up. The brain is still idling and is yet to warm up enough to get into first gear. With that being said, though, I am cognisant enough to say I am extremely happy to be back home with my kiddos and my wife. On the other hand, I can also say that the CNCF's Neuroblastoma Conference was, in my honest opinion, the best we have ever had. It was spectacular. The only problem for me was the recovery. After spending 3 nights going to bed at around 2:00 AM and getting up at 6:00 AM I truly needed some rest.
Now, there were some really important items to come out of the conference. The panel discussions on relapse and, especially, on transplant were extremely valuable. In both of those sections alone I think we gained some valuable insight. However, there simply was not enough time to address each of the ever so important issues. Going into these two discussions I had a list of about 20 insights and discussion points that I felt were important to get out. Unfortunately, we were only able to cover a few of those topics in the time allotted, but, I am still very happy with what came out. It is a challenge for any family to make a decision on what is right in these situations and I am happy to tell you that there was complete agreement on the fact that there are no definitive and absolute blanket answers. There are, however, some clues. Sometimes, there are, very clearly, answers.
So, what was my take home golden nugget? There were a bunch. If you did not get to go I would love to tell you that there is a highlight video of all of the most important points. Unfortunately, I can't do that. You are just going to have to watch all of the videos once we get them up on the Internet. Hopefully, that will be sooner than later. (But, don't write my daily to ask were they are. I can't put them up until I receive the raw footage.) The good news is that I can give you a cheat sheet. Over the next few days I will do that. In the meantime, I can tell you this. There is no answer to the transplant question. No one knows what is best. The only thing we can all agree on is that if you have residual disease going into transplant you probably need to be looking at and considering something other than a single autologous transplant. This may come in the form of no transplant, a tandem, an autologous transplant followed by a mini allogenic transplant, or an MIBG/transplant. Although we wanted one, there is no clear statistical answer as to whether the survival rates at Sloan Kettering are any better than those of the COG.
HERE THAT! THERE IS STILL NO CLEAR ANSWER.
However, that is also not to say that there are probably times when it is better to chose one over the other. We can discuss this more in the days to come.
Let's see, relapse. Hmmm. That is a hard one and there is no answer there as well. I think we all found out that it is highly dependent on the child. There are long term successes. There is also some debate on whether we call these kids cured but there are very definitely some very long term survivors. Response seems to be the key. It is pretty intuitive - the more your child responds the better chance you have to achieve a long term remission. There is no clear path. In other words, there is no evidence that going with a high dose strategy is any better than an intermediate or even a low dose one. It is dependent upon the child and the family's wants and needs. There is a trade off with every decision.
There were a litany of other important points as well. Dr. Cohn's presentation of ALK inhibitors is leading many to hope in the future. This recent discovery by Dr. Maris's team is revolutionary. I am happy to report that the Nestle vaccine trial that Sydney was on is back open with some minor changes. I am even happier to say that there were some incredible responses by many in that trial. Dr. Cheung also gave a great talk on 3F8 and Sloan. I personally believe there were some important realizations to be made regarding antibody therapy. There is also still much in their pipeline. I was less happy regarding the presentation of the 14.18 antibodies. I felt it was terribly incomplete and missed on many points. However, I was happy to hear that there was another version of the 14.18 antibody available at St. Jude's to children with refractory or relapsed disease. I believe it holds great promise but that was hard to get from the presentation. I could go on. There was more and more. Unfortunately, there are rugrats stirring and it is time to make my way to the shower.
It is good to be home but I already miss all of the families, physicians, and friends that were at the conference. I can't believe it is already over.
With hope (and recovery)
It was a purposeful weekend.
Now, there were some really important items to come out of the conference. The panel discussions on relapse and, especially, on transplant were extremely valuable. In both of those sections alone I think we gained some valuable insight. However, there simply was not enough time to address each of the ever so important issues. Going into these two discussions I had a list of about 20 insights and discussion points that I felt were important to get out. Unfortunately, we were only able to cover a few of those topics in the time allotted, but, I am still very happy with what came out. It is a challenge for any family to make a decision on what is right in these situations and I am happy to tell you that there was complete agreement on the fact that there are no definitive and absolute blanket answers. There are, however, some clues. Sometimes, there are, very clearly, answers.
So, what was my take home golden nugget? There were a bunch. If you did not get to go I would love to tell you that there is a highlight video of all of the most important points. Unfortunately, I can't do that. You are just going to have to watch all of the videos once we get them up on the Internet. Hopefully, that will be sooner than later. (But, don't write my daily to ask were they are. I can't put them up until I receive the raw footage.) The good news is that I can give you a cheat sheet. Over the next few days I will do that. In the meantime, I can tell you this. There is no answer to the transplant question. No one knows what is best. The only thing we can all agree on is that if you have residual disease going into transplant you probably need to be looking at and considering something other than a single autologous transplant. This may come in the form of no transplant, a tandem, an autologous transplant followed by a mini allogenic transplant, or an MIBG/transplant. Although we wanted one, there is no clear statistical answer as to whether the survival rates at Sloan Kettering are any better than those of the COG.
HERE THAT! THERE IS STILL NO CLEAR ANSWER.
However, that is also not to say that there are probably times when it is better to chose one over the other. We can discuss this more in the days to come.
Let's see, relapse. Hmmm. That is a hard one and there is no answer there as well. I think we all found out that it is highly dependent on the child. There are long term successes. There is also some debate on whether we call these kids cured but there are very definitely some very long term survivors. Response seems to be the key. It is pretty intuitive - the more your child responds the better chance you have to achieve a long term remission. There is no clear path. In other words, there is no evidence that going with a high dose strategy is any better than an intermediate or even a low dose one. It is dependent upon the child and the family's wants and needs. There is a trade off with every decision.
There were a litany of other important points as well. Dr. Cohn's presentation of ALK inhibitors is leading many to hope in the future. This recent discovery by Dr. Maris's team is revolutionary. I am happy to report that the Nestle vaccine trial that Sydney was on is back open with some minor changes. I am even happier to say that there were some incredible responses by many in that trial. Dr. Cheung also gave a great talk on 3F8 and Sloan. I personally believe there were some important realizations to be made regarding antibody therapy. There is also still much in their pipeline. I was less happy regarding the presentation of the 14.18 antibodies. I felt it was terribly incomplete and missed on many points. However, I was happy to hear that there was another version of the 14.18 antibody available at St. Jude's to children with refractory or relapsed disease. I believe it holds great promise but that was hard to get from the presentation. I could go on. There was more and more. Unfortunately, there are rugrats stirring and it is time to make my way to the shower.
It is good to be home but I already miss all of the families, physicians, and friends that were at the conference. I can't believe it is already over.
With hope (and recovery)
It was a purposeful weekend.
Wednesday, July 16, 2008
Really Cool Research
Good morning! First I want to thank everyone for their help with perusing the handbook. No offense, but you are a truly easy group to impress. Either that, or you are just so thankful to have this resource available that you can't possibly think of anything negative to say. Well, I feel the same way. Regardless, I am still open to constructive criticism if any would like to throw some my way.
I am busily getting ready for the conference. Over the last few years it has become increasingly more evident that while everyone appreciates the CNCF no one seems to truly understand what we do, what our priorities are, or how we do what we do. I think part of that is our fault. We are so busy doing that we often don't spend adequate time telling everyone what it is that we have been up to. So, in a nutshell, I have been tasked with that duty.
This is no easy task. I am tremendously proud of all that CNCF has accomplished. This really should not come as a surprise. After all, I am a pretty active neuroblastoma guy and I have decided to dedicate my life to this organization. So, it must be important. They must do important things. But, what are they? Do you know? Of course not, you have not been told. And that, is my job.
The problem becomes, how do I boil all of this passion and information down into a few minutes of a presentation? How do I adequately cover all of the important things that we do? Thankfully, most people already know what we do for education. After all, we do put on this humongous conference for families. But, we also write educational articles, provide educational seminars, provide discussion forums and a home for the neuroblastoma handbook. In fact, when you get right down to it, I don't think there is one of us that you could not call at 3:00 AM and would not gladly try and talk you through anything that is neuroblastoma. Also, I can guarantee that if we did not know the answer we would call every expert necessary to find it out. Bottom-line, I think these are all examples of what we are relatively well known for. It is because we are out there in the forefront and anyone can see these efforts.
Ironically, it is just a sliver of what we actually do. My job is to bring the rest to light. What are the other things we do? Where do I start?
Well, if you have come to know me at all you must know that research is one of the things that drives me the most. In fact, secretly, this is probably the most important to me. Knowing that research is that important to me and that I have dedicated myself to this organization you must then begin to realize that it must have a key research component. And that it does. I am extremely proud of the research that the CNCF funds. I don't think people realize what we fund or why. Well, I know that people think we fund the NANT and MSKCC and I am pretty sure that they have an inkling that we have this thing we call a Junior Investigators program but, I don't think anyone truly understands the impact of what and how we fund. Frankly, if they did, it would not be rational for anyone to put their dollars anywhere else. I have to get this across. This is were you come in.
Now I can handle talking about our initiatives with the NANT and MSKCC. Those research investments are bulletproof. Furthermore, when I explain how we fund them, I think everyone will be blown away with what a critical funding piece we are. For example, did you know that the CNCF pays the patient research costs for more than half of the patients that are put on a NANT trial? Did you know that in some cases we have even committed to pay for the drugs utilized? Yes, NANT, the largest phase I and II consortium providing neuroblastoma clinical trials is able to put kids on trial because of dollars the CNCF provides. I bet you did not know that. Furthermore, did you know that the NANT has provided 14 different clinical trials over the last 8 years. It is an incredible efficient and light weight organization that, dollar for dollar, is simply the single best investment in research around. But, I digress. I already told you that that was the easy stuff to get across.
What is more difficult to explain is our Junior Investigator Program. With this, the CNCF funds many, many studies - and they aren't inexpensive either. For example, just this year we funded 4 more 2 year $100,000.00 grants. Think about that. And, I bet you don't even know what we spent that on. What research? You see the problem. That is what I need to tell you about. At any moment we may have as many as 10 of these different research projects going on and no one has any clue (a) that we are doing them or (b) how totally cool this research is. Now my trick is to pick a few of these and tell everyone about them in a way that will make sense to everyone. That is no easy feat. For the most part these are all complex studies chock full of medical jargon. So, once again, the price for reading my personal diary is that you are going to have to listen to me talk about a few of these studies so that I can practice. They are incredibly important and innovative studies but, unless I explain them correctly, you will never know how truly great they are. So, here I go. My first stab at one of our most recent studies.
B7H3, an Immunological Target for Neuroblastoma. This study is brought to us by Hong Xu from Sloan Kettering. This researcher is being mentored by Nai-Kong Chong, the father of the 3F8 antibody. So we have a pretty good indication that this research is already going to be exciting. Regardless, this is what you need to know about this incredibly cutting edge science.
Cancer is able to survive in people because it is able to evade our immune systems. After all, our immune system is the most effective weapon in the world, it is better than any drug. The question becomes: How does cancer avoid being ravenously murdered by our little white blood cells. Well, the common belief is that there are little proteins that sit on the surface of cancer cells. These proteins essentially paralyze our killer white cells. This is how cancer survives and grows. Think of the cancer cells spraying freeze spray at the white cells. The white cells are immediately frozen and can no longer kill the neuroblastoma cell.
Researchers at Sloan Kettering have had much success in treating neuroblastoma brain metastases with an antibody called 8H9. They have recently discovered that this antibody attaches to protein on the surface of a neuroblastoma cell called B7H3. The belief is that this protein is one of those that is so good at paralyzing white blood cells. Unfortunately, we don't understand exactly how these proteins work and how they turn off and paralyze the killer instinct of the white cells. We don't know how the white cells receive these signals. We believe that there must be some type of receptor on the white cell. This study will (a) identify what these receptors are and (b) identify antibodies that could be used to block these signals.
Now, this is incredibly innovative and incredibly important to the neuroblastoma world. Having a thorough understanding of exactly how cancer cells evade the immune system is very important. Furthermore, enhancing the activity of natural killer cells has implications for all different kinds of therapies in neuroblastoma. This very well, could be the key to unlocking many doors. This is important research that I am proud of. In fact, I would say this is a critical study to fund and I would stack it up against any other study in need of funding anywhere in the world. Wouldn't you agree? What is more important? Do you know of something?
Okay, so how did I do? That was just one example of many of our research projects that I plan to cover. Was it easy to understand? Do you see its relevance? Do you understand my excitement? Did you know we were doing this research? Are you blown away? Am I just nuts, (Don't answer that one?) or is the some of the coolest research you have ever heard about?
Once again, I would love your feedback.
I have purpose from the bottom of my feet to the tippy top of my head.
I am busily getting ready for the conference. Over the last few years it has become increasingly more evident that while everyone appreciates the CNCF no one seems to truly understand what we do, what our priorities are, or how we do what we do. I think part of that is our fault. We are so busy doing that we often don't spend adequate time telling everyone what it is that we have been up to. So, in a nutshell, I have been tasked with that duty.
This is no easy task. I am tremendously proud of all that CNCF has accomplished. This really should not come as a surprise. After all, I am a pretty active neuroblastoma guy and I have decided to dedicate my life to this organization. So, it must be important. They must do important things. But, what are they? Do you know? Of course not, you have not been told. And that, is my job.
The problem becomes, how do I boil all of this passion and information down into a few minutes of a presentation? How do I adequately cover all of the important things that we do? Thankfully, most people already know what we do for education. After all, we do put on this humongous conference for families. But, we also write educational articles, provide educational seminars, provide discussion forums and a home for the neuroblastoma handbook. In fact, when you get right down to it, I don't think there is one of us that you could not call at 3:00 AM and would not gladly try and talk you through anything that is neuroblastoma. Also, I can guarantee that if we did not know the answer we would call every expert necessary to find it out. Bottom-line, I think these are all examples of what we are relatively well known for. It is because we are out there in the forefront and anyone can see these efforts.
Ironically, it is just a sliver of what we actually do. My job is to bring the rest to light. What are the other things we do? Where do I start?
Well, if you have come to know me at all you must know that research is one of the things that drives me the most. In fact, secretly, this is probably the most important to me. Knowing that research is that important to me and that I have dedicated myself to this organization you must then begin to realize that it must have a key research component. And that it does. I am extremely proud of the research that the CNCF funds. I don't think people realize what we fund or why. Well, I know that people think we fund the NANT and MSKCC and I am pretty sure that they have an inkling that we have this thing we call a Junior Investigators program but, I don't think anyone truly understands the impact of what and how we fund. Frankly, if they did, it would not be rational for anyone to put their dollars anywhere else. I have to get this across. This is were you come in.
Now I can handle talking about our initiatives with the NANT and MSKCC. Those research investments are bulletproof. Furthermore, when I explain how we fund them, I think everyone will be blown away with what a critical funding piece we are. For example, did you know that the CNCF pays the patient research costs for more than half of the patients that are put on a NANT trial? Did you know that in some cases we have even committed to pay for the drugs utilized? Yes, NANT, the largest phase I and II consortium providing neuroblastoma clinical trials is able to put kids on trial because of dollars the CNCF provides. I bet you did not know that. Furthermore, did you know that the NANT has provided 14 different clinical trials over the last 8 years. It is an incredible efficient and light weight organization that, dollar for dollar, is simply the single best investment in research around. But, I digress. I already told you that that was the easy stuff to get across.
What is more difficult to explain is our Junior Investigator Program. With this, the CNCF funds many, many studies - and they aren't inexpensive either. For example, just this year we funded 4 more 2 year $100,000.00 grants. Think about that. And, I bet you don't even know what we spent that on. What research? You see the problem. That is what I need to tell you about. At any moment we may have as many as 10 of these different research projects going on and no one has any clue (a) that we are doing them or (b) how totally cool this research is. Now my trick is to pick a few of these and tell everyone about them in a way that will make sense to everyone. That is no easy feat. For the most part these are all complex studies chock full of medical jargon. So, once again, the price for reading my personal diary is that you are going to have to listen to me talk about a few of these studies so that I can practice. They are incredibly important and innovative studies but, unless I explain them correctly, you will never know how truly great they are. So, here I go. My first stab at one of our most recent studies.
B7H3, an Immunological Target for Neuroblastoma. This study is brought to us by Hong Xu from Sloan Kettering. This researcher is being mentored by Nai-Kong Chong, the father of the 3F8 antibody. So we have a pretty good indication that this research is already going to be exciting. Regardless, this is what you need to know about this incredibly cutting edge science.
Cancer is able to survive in people because it is able to evade our immune systems. After all, our immune system is the most effective weapon in the world, it is better than any drug. The question becomes: How does cancer avoid being ravenously murdered by our little white blood cells. Well, the common belief is that there are little proteins that sit on the surface of cancer cells. These proteins essentially paralyze our killer white cells. This is how cancer survives and grows. Think of the cancer cells spraying freeze spray at the white cells. The white cells are immediately frozen and can no longer kill the neuroblastoma cell.
Researchers at Sloan Kettering have had much success in treating neuroblastoma brain metastases with an antibody called 8H9. They have recently discovered that this antibody attaches to protein on the surface of a neuroblastoma cell called B7H3. The belief is that this protein is one of those that is so good at paralyzing white blood cells. Unfortunately, we don't understand exactly how these proteins work and how they turn off and paralyze the killer instinct of the white cells. We don't know how the white cells receive these signals. We believe that there must be some type of receptor on the white cell. This study will (a) identify what these receptors are and (b) identify antibodies that could be used to block these signals.
Now, this is incredibly innovative and incredibly important to the neuroblastoma world. Having a thorough understanding of exactly how cancer cells evade the immune system is very important. Furthermore, enhancing the activity of natural killer cells has implications for all different kinds of therapies in neuroblastoma. This very well, could be the key to unlocking many doors. This is important research that I am proud of. In fact, I would say this is a critical study to fund and I would stack it up against any other study in need of funding anywhere in the world. Wouldn't you agree? What is more important? Do you know of something?
Okay, so how did I do? That was just one example of many of our research projects that I plan to cover. Was it easy to understand? Do you see its relevance? Do you understand my excitement? Did you know we were doing this research? Are you blown away? Am I just nuts, (Don't answer that one?) or is the some of the coolest research you have ever heard about?
Once again, I would love your feedback.
I have purpose from the bottom of my feet to the tippy top of my head.
Tuesday, July 15, 2008
The Neuroblastoma Handbook
Over the past few weeks I have mentioned that I have a big announcement to make. In fact, it won't even be officially made until Saturday. Ironically, I won't even be the one making it. However, since you are part of the secret twerp society that exists within my own private, secret diary I really have no problem making an early announcement here. I mean, after all, it is just between you and I. This announcement, however, is enormous; not only for the families of children with neuroblastoma today but also for those unfortunate enough to step into our world in the future. It is a monumental first.
On Saturday, at the CNCF Conference in Chicago, the online version of the NB Handbook for Parents will be unveiled. This guide, written by families touched by neuroblastoma and reviewed by some of this nation's greatest researchers, contains important details that any family of a child with neuroblastoma needs to know. It is a resource like no other. It is a living book which will continue to grow and change over the years but is always meant to contain the most current and relevant information available. This is a huge step for the families of neuroblastoma. It is one-of-a-kind.
Now, I would love to take credit for the handbook but, to be honest, there were many others that had far more to do with it than I. I have just been a cog in the wheel happy to help get it online. I have also had the opportunity to review (and argue about:))some of the sections and am extremely proud of what has been created. It certainly has my stamp of approval and I can guarantee you that it will be one of the resources that I continually refer to. I can tell you already that there have been many things that I have learned that I did not know about neuroblastoma just by reviewing some of the materials. It is an incredible resource. Big thanks have to go out to Donna Ludwinski, Shirley Staples, and Jennifer Click (our chief editors) and, of course, to the many, many people who contributed articles to the effort.
Now, the trick is, you can't tell anyone that I let the cat out of the bag. However, I need your help to review it and share your thoughts on it's ease of use, etc. Could you take a look at it and give me your thoughts? I should first tell you that not all of it is up. However, many of the most helpful sections are. Keep in mind, it is still somewhat hidden. I can assure you that once it is launched it will be easy for everyone to find. In the meantime, it is only available through this link:
http://www.nbhope.org/blogs/parents_handbook/archive/2008/07/03/51884.aspx
Take a look, but remember ,you can't tell anyone about it until next week.
Today is one large step for purpose.
On Saturday, at the CNCF Conference in Chicago, the online version of the NB Handbook for Parents will be unveiled. This guide, written by families touched by neuroblastoma and reviewed by some of this nation's greatest researchers, contains important details that any family of a child with neuroblastoma needs to know. It is a resource like no other. It is a living book which will continue to grow and change over the years but is always meant to contain the most current and relevant information available. This is a huge step for the families of neuroblastoma. It is one-of-a-kind.
Now, I would love to take credit for the handbook but, to be honest, there were many others that had far more to do with it than I. I have just been a cog in the wheel happy to help get it online. I have also had the opportunity to review (and argue about:))some of the sections and am extremely proud of what has been created. It certainly has my stamp of approval and I can guarantee you that it will be one of the resources that I continually refer to. I can tell you already that there have been many things that I have learned that I did not know about neuroblastoma just by reviewing some of the materials. It is an incredible resource. Big thanks have to go out to Donna Ludwinski, Shirley Staples, and Jennifer Click (our chief editors) and, of course, to the many, many people who contributed articles to the effort.
Now, the trick is, you can't tell anyone that I let the cat out of the bag. However, I need your help to review it and share your thoughts on it's ease of use, etc. Could you take a look at it and give me your thoughts? I should first tell you that not all of it is up. However, many of the most helpful sections are. Keep in mind, it is still somewhat hidden. I can assure you that once it is launched it will be easy for everyone to find. In the meantime, it is only available through this link:
http://www.nbhope.org/blogs/parents_handbook/archive/2008/07/03/51884.aspx
Take a look, but remember ,you can't tell anyone about it until next week.
Today is one large step for purpose.
Monday, July 14, 2008
Return of the Twerp Leader
She's back! And, she is in one whole delightful piece. I can also tell you that she had an incredible time. What I can't tell you is too many details. This experience brings back memories of years ago when she went to the single day camps. We would never really know what transpired and we simply took to making up our own versions of what happened until we could get some input from the adults on the trip. This time was better, though. We know that she got to go on a zip line, that she rode horses, she swam, she made a ton of new friends and, most of all, that she had a tremendous time. To be honest, she really did not want to come home. If you ask me, that is the definition of fun. At first, we were a little sad that she didn't miss us but later she did fess up that she spent some time that first evening shedding tears. In the end, I am happy to report that she seemed to have a great time and somewhat proud to know that she was responsible enough to change her underwear everyday.
The twerp gallery was especially glad to see the return of their leader. I have never seen Graham or Ainsley hug her harder. It was not long before they were back under her spell and doing everything she asked. They spent much of Friday and the weekend following her around like a gaggle of puppy dogs. Twerp heaven.
This weekend brought yet another first for Sydney. Jillian, her best friend in the world, spent the night. It made for a jam packed weekend as Lynley also had me painting like a madman for an upcoming family reunion at our house. Regardless, the girls had a great time. There was swimming, playing in the playroom, a trip to a birthday party, dinner at Japanese Steakhouse, a complete breakfast of eggs, bacon, and cinnamon rolls, more swimming, and even a picnic lunch at the botanical gardens. I well tell you with all due seriousness, when I die, I want to come back as a little girl in this household.
Well, there you have it. An update from a very complete weekend. Now comes the rush to get ready for the neuroblastoma conference. It starts on Thursday. And, if I remember correctly, I owe everyone an announcement. It will have to wait until tomorrow.
With hope and purpose.
The twerp gallery was especially glad to see the return of their leader. I have never seen Graham or Ainsley hug her harder. It was not long before they were back under her spell and doing everything she asked. They spent much of Friday and the weekend following her around like a gaggle of puppy dogs. Twerp heaven.
This weekend brought yet another first for Sydney. Jillian, her best friend in the world, spent the night. It made for a jam packed weekend as Lynley also had me painting like a madman for an upcoming family reunion at our house. Regardless, the girls had a great time. There was swimming, playing in the playroom, a trip to a birthday party, dinner at Japanese Steakhouse, a complete breakfast of eggs, bacon, and cinnamon rolls, more swimming, and even a picnic lunch at the botanical gardens. I well tell you with all due seriousness, when I die, I want to come back as a little girl in this household.
Well, there you have it. An update from a very complete weekend. Now comes the rush to get ready for the neuroblastoma conference. It starts on Thursday. And, if I remember correctly, I owe everyone an announcement. It will have to wait until tomorrow.
With hope and purpose.
Friday, July 11, 2008
Another magical day
Guess what, guess what, guess what? Sydney comes home today! I can't wait. At 11:00 AM I will be able to wrap my arms around her again. I have missed her terribly and I have stacks of twerp hugs and kisses awaiting her. Also, I just can't wait to hear the details. I think the thing I am looking forward to most is seeing that look of pride in her eyes when she talks to Graham and Ainsley. She is the big sister and this was a big first. She will be proud and I am quite sure it will be an incredible reunion.
On another note, things seem to be status quo around here. A still have a hairless twerp and a spunky twerp. Yesterday after naps and an afternoon swim Graham, Ainsley, and I headed out to the magic shop. We were preparing for a trip up to the hospital to see Hayden. Hayden is up at Cook's for his stem cell collection. Weeks ago when I was talking with the kiddos about what they would like to do for Hayden while he was in the hospital, they all said magic tricks. So, before we go up to the hospital to see Hayden we stop by the magic store to pick up a little magic of our own. The tricks we do are simple but I think effective. You would be amazed at how well a 4 year old and a 7 year master magic when it comes to slight of hand. Ainsley, on the other hand, has no interest in magic but is quite happy with being the lovely assistant that steals the show. Anyway, I usually get 3 magic tricks - one amazing adult trick which I do not show anyone how the magic takes place and two tricks that the kids can pull off. One trick is for my kiddos to keep and the other is for them to teach to and give Hayden. This is fun and a great activity. The kids absolutely love magic but it also helps them develop some all important hand coordination. If you are ever visiting a child in the hospital I highly suggest stopping by a magic store. It is great entertainment and everyone, especially them, needs to believe that a little magic exists.
Unfortunately, by the time we made it to the hospital Hayden was asleep. We will stop by and try to see him again today before we pick up Sydney.
Pride and magic - two important ingredients in purpose.
On another note, things seem to be status quo around here. A still have a hairless twerp and a spunky twerp. Yesterday after naps and an afternoon swim Graham, Ainsley, and I headed out to the magic shop. We were preparing for a trip up to the hospital to see Hayden. Hayden is up at Cook's for his stem cell collection. Weeks ago when I was talking with the kiddos about what they would like to do for Hayden while he was in the hospital, they all said magic tricks. So, before we go up to the hospital to see Hayden we stop by the magic store to pick up a little magic of our own. The tricks we do are simple but I think effective. You would be amazed at how well a 4 year old and a 7 year master magic when it comes to slight of hand. Ainsley, on the other hand, has no interest in magic but is quite happy with being the lovely assistant that steals the show. Anyway, I usually get 3 magic tricks - one amazing adult trick which I do not show anyone how the magic takes place and two tricks that the kids can pull off. One trick is for my kiddos to keep and the other is for them to teach to and give Hayden. This is fun and a great activity. The kids absolutely love magic but it also helps them develop some all important hand coordination. If you are ever visiting a child in the hospital I highly suggest stopping by a magic store. It is great entertainment and everyone, especially them, needs to believe that a little magic exists.
Unfortunately, by the time we made it to the hospital Hayden was asleep. We will stop by and try to see him again today before we pick up Sydney.
Pride and magic - two important ingredients in purpose.
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