It is quite frustrating that I already wrote this entry and then it disappeared. Sometimes I really dislike blogger. Word to the wise. I am in the habit of highlighting all of the text that I would like spell-checked. However, if you do that in blogger, it will erase every word you have written. Forever. It drives me crazy. Beware of the evil spell checker.
Now, on with the story.
So, what I really was going to talk about was some of the work that I am doing for an upcoming art exhibition entitled "Life. Through the eyes of a child living with neuroblastoma." The show will last 3 months. Opening night is September 5, 2008 at the Fort Worth Community Arts Center. The exhibition will feature photography of neuroblastoma patients that were taken by Geno Loro (http://www.genoloro.com/). I can tell you that the photography is compelling and nothing short of incredible.
This whole journey began earlier this year. We were looking for a photographer to take some pictures of children with neuroblastoma. The original purpose of the photography was going to be for some CNCF marketing materials and for an upcoming neuroblastoma awareness campaign. We originally contacted Geno out of the blue but, through a strange twist of events, it turns out he had a very personal connection with the neuroblastoma world. It was believed at one time that his son had neuroblastoma. Thankfully it turned out to be a false diagnosis but the memory and the fear of what that meant never left Geno's mind. Much to our surprise he offered to donate his time to photograph these kiddos.
Taking the pictures was no easy task. This was not as simple as just snapping a few pictures. We were looking for much more. One of my greatest personal frustrations with photography of children with cancer was that it was scary. I have found that it was not only my feeling but that many turn their head when they see a child with cancer. This is true in magazines as much as it is walking through the grocery store. No one wants to believe that it could happen to their child, their grandchild, or one of their friends. Surely, there must have been something wrong with "those" kids. Somehow "they" are different. The problem with this sentiment is that the message never gets sent. People are to busy turning the page to ever get to the message. The easiest way to escape this imagery is to forget about it altogether. It is difficult to see a picture of anyone in true crisis, especially a child. It is my opinion that this has been one of the reasons we have so much difficulty garnering support for childhood cancer.
The challenge came in obtaining photography that was far less about cancer and far more about children. The photographs had to do, at a minimum, two things. First, you must have that feeling that the child in the picture could be your child. We wanted each picture to be a personal experience. It could not scare. It had to give that feeling that the child in the picture could be any child walking down the street. Secondly, the picture had to be compelling enough that you wanted to read the words. You wanted to receive the message. This is the difficult part. Capturing that look, that expression, where you want to read more.
Geno did that in ways that go beyond description. The photography is beyond compelling. I can tell you from those few that have actually seen the pictures that they are likely the best that have ever been seen. The have met all of our objectives and more. He has captured the true victims of neuroblastoma - average, normal, and otherwise happy children and families.
The problem now is that I have to describe them. I have to talk about their purpose. While I would much rather let the photography speak for its own (which I will) I have to communicate in the marketing and press materials what this is all really about.
It is no easy task. I know I can't do the photography justice.
I am hoping my pencil has purpose today. I have a deadline.
Thursday, July 31, 2008
Wednesday, July 30, 2008
Neuroblastoma in Overdrive
Wow, is this a busy time in the world of neuroblastoma! I don't know where to start or finish. I could sit here and do nothing but simply list the neuroblastoma-ish stuff going on and I am pretty sure it would be the longest entry I have ever written. No wonder I never get a chance to go into the level of detail that I would on any one subject. So, here is a two parter.
First part! These are my nerdy little twerps. For some reason the other day, they decided to dig out some old life jackets and put them on. The only difference was that they decided to wear them as diapers. They spent well over an hour floating around giggling in their make shift diapers. They giggled endlessly. They could not get over how funny they thought they were. I have to admit. I got a good chuckle myself. I hope you do to.
It has been awhile since we have had a good picture of the hairless Dudester. His hair has grown back in a bit more since this picture of him was taken a few weeks ago but I just could not resist. Here he is - the dapper dudely.
It has been awhile since we have had a good picture of the hairless Dudester. His hair has grown back in a bit more since this picture of him was taken a few weeks ago but I just could not resist. Here he is - the dapper dudely. So,what is going on in the neuroblastoma world. Well, for one, President Bush signed the Caroline Pryce Walker Conquer Childhood Cancer Act yesterday. This means it is official. The legislation authorizes $150 million over five years for pediatric cancer research and outreach, and reaffirms our nation's commitment to eradicating the number one cause of death by disease for children. You can read more about it here:
It is great news! However, the battle is not yet over. We still have to fight for the dollars to be appropriated. The next step is at the Defense Appropriations Subcommittee. Just because they passed the legislation does not mean we will get the dollars and, unfortunately, that is the tough part. Now the real work begins. You will be hearing more about these efforts in the days and weeks to come. We will need to write members of this subcommittee to urge them to prioritize childhood cancer funding or this will all be for not. I will provide more information in the coming days and weeks.
For those of you that love country music a generous donor is offering an autographed guitar on eBay. The auction only has one day left. The sale will benefit the research initiatives of the Children's Neuroblastoma Cancer Foundation. More information can be found below. Please stop by and bid.
This weekend in Graham, Texas they will be have a rodeo and day of festivities to benefit the CNCF. You can bet that I will have my boots on. There are a ton of festivities planned. If you are looking for a good time it is the perfect way to entertain the family this weekend. I hope to see you there. More information can be found at:
You know what? I could go on. This is just two of the things that are going on at this minute. We also have an art auction in California. I am working on a really cool liposomal formulation of irinotecan. Yes, me! Isn't that totally cool? We are getting ready for scans next week. I am helping to put together a local neuroblastoma symposium. I am trying to find sponsors for the art gallery showing of "Life. Through the eyes of a child living with neuroblastoma."
The list goes on.
My purpose is full speed ahead.
Tuesday, July 29, 2008
CNCF Neuroblastoma Conference Part 2
Finally, I have a chance to get back to the conference before it all slips away. Thankfully, most of it will be available on video online. That is, of course, if I ever get the raw video. In the meantime, I can only offer whatever stuck to the sides of the tube that extends between my two ears. The last time I talked about the conference it was all about the transplant discussion. As I mentioned, there was not much that was comparable from one treatment to another. That was a little disappointing for us as parents of children with neuroblastoma but I think we have to realize also that it is not on purpose. The very nature of many of these studies make it impossible to compare. These differences come from the types of patients on trial (chemo sensitive vs. chemo-resistant, NMYC amplified vs. non-NMYC amplified, and responders vs. non-responders), the type of measure (overall survival, progression free survival, event free survival, or response), the amount of time (1 year, 3 years, 5 years), and the type of trial(phase I, phase II, or phase III). There simply is no direct comparison. This is why we have to be careful when making a decision. The key is not always the trial that has the highest percentage. It is critical to understand the differences. A trial with a seemingly low survival percentage (20%) may very well be better than one with a 100% survival rate. I know, I know, it sounds counter intuitive. It sounds wrong. But, it isn't! That statement is right on the money. If you want to compare one treatment to another you have to understand these seemingly subtle differences. It isn't just about the numbers - in fact, it is far from it. And, we have not even begun to weigh in on the toxicities.
Now, last week I kept telling you that even amongst this confounding statistical mess there were some rules that we could clearly discern. I would like to get to one that I felt was important. This one actually came from one of my questions and although my question was leading I was totally surprised to see agreement on the subject. Frankly, I had always felt it personally but I was bit shocked to see it addressed and agreed upon so openly amongst the experts. It is one of those things that I have seen happen all to often at many hospitals across the country. Essentially, my question was: If you have a child with resistant disease to induction should you be considering a single autologous transplant (or even a tandem - which I neglected to mention). There was a resounding "No, probably not." from the panel. Essentially, you should be considering other options at this point. This is not to say that a transplant may not be the answer. But you must be looking outside the box as well. I think this makes a lot of sense and I have always been surprised by those committed to sending kids into transplant with disease. While I have personally seen a few go into transplant with minimal disease and come out with a complete response, the vast majority have not or have relapsed so quickly they had little to fight with. This is just a Dad's view on five years of watching. I use no scientific measure. Although it is not always a perfect outcome I have seen many respond to other therapies and I thought this was a key point to make and question to ask.
When your child still has disease at the end of induction there are still viable options. Believe me, there is a surprisingly large number of patients that do not respond to induction. These kiddos have been successfully treated with other modalities. As a parent (or oncologist) you have to understand the type of disease (solid tumor, bone marrow, or bone disease) and what types of treatments that have historically worked well with that type(s) of disease. It is also very important to take into consideration the health of the child. This may also lead you to make a very different decision. Regardless, I think we clearly saw at the conference that kids with marrow disease clearly responded to antibody therapy and although it was not addressed directly I know of several examples of kids that have also had bone lesions respond. Another therapy that seems to work well in these cases is MIBG (+/-) transplant. I have seen many kids respond, some with solid mass, some with bone disease, and some with marrow. I just think this is important to realize and to soak in. One of my favorite comments that really drove the point home for me was: "If you have given your child chemo for all of these months and he(she) hasn't responded, why would you think that more chemo would cure them?" Although this is a very generalized statement I think it really drives the point home. What we are doing is not working. Let's try something else.
I think another important point that was made during this particular discussion was related to toxicities. Dr. Yanik kept trying to give us some insight into the world of a transplanter. We, as parents, are always concerned about the toxicities that come from infection or organ failure. One of the organs that we rarely consider is the soil of our bone marrow. One of the toxicities that scare transplanters the most is damaging the soil that allows our stem cells to grow. Especially when we are considering multiple transplants or other highly toxic treatments. We run the risk of creating kids that are highly dependent on platelets for extended periods of time. We can do some serious damage. I think this is especially important to consider if you have a child that is unlikely to respond to these types of therapies. That is a significant risk of many of these transplant regimens and not something to take lightly. We must consider the relative risks and rewards for our child with every therapy. We have to be mindful of what has worked and what has not for children that are similar to our own.
Ask questions. Don't except the norm.
And, of course, I am just a Dad - NOT a medical professional. Ask your doctor. More importantly, ask an oncologist that specializes in neuroblastoma treatment.
You are your child's best advocate.
That is our purpose.
Now, last week I kept telling you that even amongst this confounding statistical mess there were some rules that we could clearly discern. I would like to get to one that I felt was important. This one actually came from one of my questions and although my question was leading I was totally surprised to see agreement on the subject. Frankly, I had always felt it personally but I was bit shocked to see it addressed and agreed upon so openly amongst the experts. It is one of those things that I have seen happen all to often at many hospitals across the country. Essentially, my question was: If you have a child with resistant disease to induction should you be considering a single autologous transplant (or even a tandem - which I neglected to mention). There was a resounding "No, probably not." from the panel. Essentially, you should be considering other options at this point. This is not to say that a transplant may not be the answer. But you must be looking outside the box as well. I think this makes a lot of sense and I have always been surprised by those committed to sending kids into transplant with disease. While I have personally seen a few go into transplant with minimal disease and come out with a complete response, the vast majority have not or have relapsed so quickly they had little to fight with. This is just a Dad's view on five years of watching. I use no scientific measure. Although it is not always a perfect outcome I have seen many respond to other therapies and I thought this was a key point to make and question to ask.
When your child still has disease at the end of induction there are still viable options. Believe me, there is a surprisingly large number of patients that do not respond to induction. These kiddos have been successfully treated with other modalities. As a parent (or oncologist) you have to understand the type of disease (solid tumor, bone marrow, or bone disease) and what types of treatments that have historically worked well with that type(s) of disease. It is also very important to take into consideration the health of the child. This may also lead you to make a very different decision. Regardless, I think we clearly saw at the conference that kids with marrow disease clearly responded to antibody therapy and although it was not addressed directly I know of several examples of kids that have also had bone lesions respond. Another therapy that seems to work well in these cases is MIBG (+/-) transplant. I have seen many kids respond, some with solid mass, some with bone disease, and some with marrow. I just think this is important to realize and to soak in. One of my favorite comments that really drove the point home for me was: "If you have given your child chemo for all of these months and he(she) hasn't responded, why would you think that more chemo would cure them?" Although this is a very generalized statement I think it really drives the point home. What we are doing is not working. Let's try something else.
I think another important point that was made during this particular discussion was related to toxicities. Dr. Yanik kept trying to give us some insight into the world of a transplanter. We, as parents, are always concerned about the toxicities that come from infection or organ failure. One of the organs that we rarely consider is the soil of our bone marrow. One of the toxicities that scare transplanters the most is damaging the soil that allows our stem cells to grow. Especially when we are considering multiple transplants or other highly toxic treatments. We run the risk of creating kids that are highly dependent on platelets for extended periods of time. We can do some serious damage. I think this is especially important to consider if you have a child that is unlikely to respond to these types of therapies. That is a significant risk of many of these transplant regimens and not something to take lightly. We must consider the relative risks and rewards for our child with every therapy. We have to be mindful of what has worked and what has not for children that are similar to our own.
Ask questions. Don't except the norm.
And, of course, I am just a Dad - NOT a medical professional. Ask your doctor. More importantly, ask an oncologist that specializes in neuroblastoma treatment.
You are your child's best advocate.
That is our purpose.
Monday, July 28, 2008
Twerp Reunion
Wow, I am still recovering from the family reunion. We had an incredible time. The kiddos are still reeling as well. In fact, they are flat out in shock. They had no idea they had such a big family. The first night we stopped by the hotel where all of the family was staying to say hello, I clearly remember getting back in the car and hearing things like "Wow, are they all our family?", "Are they all our brothers and sisters?", and "Wow, do they all live there?"
On Saturday afternoon the festivities were at our house. For one of our family reunions the numbers were somewhat small. There were only about 30 or 40 of us. It was sad that so many could not make it. On the other hand, they were all probably smart enough to know how hot it was going to be. Yes, there is apparently a smarter bloodline that is coursing through their veins. Regardless, we all had a great time. The youngest generation of kiddos had a fabulous time. They spent time playing in the playroom, swimming in the pool, jumping on the trampoline, swinging on the swing set, sucking down Popsicles, and there were even a few that followed me around as we performed magic tricks. It was a blast.
No Dungan reunion would be complete with out 12 decks of cards. That has indeed the case with this group. There were hours of gin, cribbage, and backgammon. Then, of course, each night ended with high stakes gambling crowded around the biggest table we could find for hours of black jack. Yep, Dungans, at least it kept us off of the streets.
I was really proud of Sydney, Graham, and Ainsley. I was very impressed with their manners and good spirits. Maybe it was that I wasn't playing as close attention because I raced to spend as much time as I could with everyone who attended. But, I never really noticed them being anything but perfect little twerps. That was a big challenge because twerptations were in abundance and there were many opportunities for drama. Nope, my kiddos just kept hanging on to their sanity. Most importantly they also had one heck of a time and were truly saddened to see everyone go. They are already making plans to see a few of them in the weeks to come.
Well, I had best be off. A mountain of email awaits.
And, I have purpii to attend to.
On Saturday afternoon the festivities were at our house. For one of our family reunions the numbers were somewhat small. There were only about 30 or 40 of us. It was sad that so many could not make it. On the other hand, they were all probably smart enough to know how hot it was going to be. Yes, there is apparently a smarter bloodline that is coursing through their veins. Regardless, we all had a great time. The youngest generation of kiddos had a fabulous time. They spent time playing in the playroom, swimming in the pool, jumping on the trampoline, swinging on the swing set, sucking down Popsicles, and there were even a few that followed me around as we performed magic tricks. It was a blast.
No Dungan reunion would be complete with out 12 decks of cards. That has indeed the case with this group. There were hours of gin, cribbage, and backgammon. Then, of course, each night ended with high stakes gambling crowded around the biggest table we could find for hours of black jack. Yep, Dungans, at least it kept us off of the streets.
I was really proud of Sydney, Graham, and Ainsley. I was very impressed with their manners and good spirits. Maybe it was that I wasn't playing as close attention because I raced to spend as much time as I could with everyone who attended. But, I never really noticed them being anything but perfect little twerps. That was a big challenge because twerptations were in abundance and there were many opportunities for drama. Nope, my kiddos just kept hanging on to their sanity. Most importantly they also had one heck of a time and were truly saddened to see everyone go. They are already making plans to see a few of them in the weeks to come.
Well, I had best be off. A mountain of email awaits.
And, I have purpii to attend to.
Friday, July 25, 2008
Neuroblastoma Handbook Help!
Three solid days of superior twerptitude. While it is not quite a habit yet we very definitely have a trend. I am happy to report that Sydney mastered the skill of sweet human being yesterday. I am quite proud of the change. I am hopeful that we have hit onto something here. We will see what today brings. It is high pressure time for her, this is the official start of the Dungan family reunion (at our house - isn't Lynley happy with me). The kiddos will not be the center of our attention and will have ample opportunity to sneak off to reek havoc. There will be many temptations. It is a great test for the twerp leader. I have no doubt that she will do a wonderful job.
Now, on the front of important neuroblastoma stuff. Now that the Neuroblastoma Handbook has been launched it now becomes the tough job of making everyone aware that is available. When most children are diagnosed one of the first places their families look for answers is on the Internet. We need your help to ensure that they can find the neuroblastoma handbook. We need to get it out there. We need to blog about it, post it, and put it everywhere we can possibly think of. In this way, it will be sure to be found. I am calling for a bum rush on all social media to get the word out. I have written an article that has a step by step list of everything we need to do to get it out there and into their hands. I am asking for your help. I have written step by step directions on exactly what we need to do. If you have a moment please click on the link below. It has simple instructions for what we can do to help get the word out.
http://www.nbhope.org/blogs/news/archive/2008/07/25/put-a-nb-handbook-badge-on-your-site.aspx
Hopefully, in no time at all, we can get it on the first page of Google.
This purpose is not only extremely meaningful but also fun.
Now, on the front of important neuroblastoma stuff. Now that the Neuroblastoma Handbook has been launched it now becomes the tough job of making everyone aware that is available. When most children are diagnosed one of the first places their families look for answers is on the Internet. We need your help to ensure that they can find the neuroblastoma handbook. We need to get it out there. We need to blog about it, post it, and put it everywhere we can possibly think of. In this way, it will be sure to be found. I am calling for a bum rush on all social media to get the word out. I have written an article that has a step by step list of everything we need to do to get it out there and into their hands. I am asking for your help. I have written step by step directions on exactly what we need to do. If you have a moment please click on the link below. It has simple instructions for what we can do to help get the word out.
http://www.nbhope.org/blogs/news/archive/2008/07/25/put-a-nb-handbook-badge-on-your-site.aspx
Hopefully, in no time at all, we can get it on the first page of Google.
This purpose is not only extremely meaningful but also fun.
Thursday, July 24, 2008
The CNCF Neuroblastoma Conference - a review
Good morning! Well I am happy to report that we have officially turned the corner on Sydney's behaviour. It seems like we have officially established some boundaries and she understands what they are. Now, I can't guarantee that she will never act out again but I can tell you that she is aware of her behaviour. She knows what is unacceptable even when she is angry. Yesterday, aside from a few pouts that some things did not go her way, she was utterly perfect. 2 days down and only 19 more to go until we have established an official habit. We will watch closely. I am not saying that she is no longer a twerp, just a more balanced one.
Well, before it escapes my mind I really want to talk about the conference. I know there are parents out there that are really curious as to what was said. I think one of the most interesting discussions concerned transplant options. We had a panel consisting of Dr. Bolotin, Dr. Yanik, Dr. Yamashiro, and Dr. Cheung. Each were responsible for representing a certain opinion on transplant. We discussed the new Topotecan containing single autologous transplant regimen from City of Hope, MIBG/transplant Combinations, tandem transplants, allogenic transplants and Sloan's option of no transplant at all.
Over all ,I though the discussion was very good. As one should expect it became very clear that there is no answer right now. There just isn't. I am not being sneaky, biased, or opinionated. There is simply no clear answer.
There are some general rules, however.
Tomorrow, I will hit upon some of the general rules that I think we established. Today I will hit upon why there is no clear answer between one decision and another. People will always continue to compare statistics from one institution to another. This is only relevant if the statistics that you are comparing are actually the same. I can tell you from the basis of our discussions at the conference none were using the same measure. I will explain.
Dr. Bolotin showed a survival curve for their Topotecan containing transplant. Ironically, you could not see a curve because it was a straight line at 100% survival. That seems the obvious choice doesn't it? Hold on? Her curve only included 8 patients and it was only for a period of 333 days. That is not long. That means the eight patients they studied were all transplanted sometime in the last 333 days and they were all surviving so far. I don't mean to shock anyone but that isn't surprising. First off, this transplant regimen only includes responders to upfront therapy. I would fully expect the vast majority of them to be responding at this point regardless of the treatment. It shows that City of Hope is a good transplant center but beyond that it really does not answer many questions. We need to wait another 5 years to look back on the data and see what an actual curve looks like then. In this case we are looking for lower toxicities and hopefully no reduction in survival. It is interesting to note that Topotecan could actually increase the survival in this regimen due to a mechanism of action that was totally not expected or anticipated. You will need to watch the video to find out more.
Dr. Yanik showed several curves but I will start with MIBG. I don't remember the exact survival percentage but it was in the neighborhood of 25 to 35% over 3 years. Would you believe that this could possibly be the best option? You see his data was event free survival. Not overall survival. So, many kids may be surviving that are not in this curve because they are taken off the curve for many different reasons. They are taken off for "events," like severe toxicities, relapse, etc. The good news is that we know that the "survivors" are doing fairly well. The other incredibly important thing to note is that these statistics also include the hardest patients to cure. You see, when this data was collected you could not be on an MIBG/transplant trial without having failed induction chemotherapy. These kids are the worst of the bunch and the hardest to cure. The fact that so many of them survived so far out is incredible. This study was also hard to get a handle on as many patients were treated at different dosing levels. Although the number of patients was good (nearly 80 or 90 if I remember correctly) it clearly was not comparable to some of the other options.
Dr. Yamashiro presented some data on allogenic transplants. It was this section that I probably learned the most about from the entire conference. Essentially the idea from an allogenic transplant is to create a graft versus tumor (GVT) effect. In this case you not only receive the benefits from a typical transplant but many also benefit from the GVT effect. In this scenario the donor cells not only reseed the marrow but the also attack tumor. It is very interesting. The problem with allogenic transplants is that the are extremely dangerous and come at a cost. His review showed a morbidity rate of a little over 30%. This means over 30% did not survive the allogenic transplant. The survival rates were not bad but we have to be concerned about at what cost. In an effort to reduce the morbidity Dr. Yamashiro started doing autologous transplants followed by a mini allogenic transplant. It is the science and technique of how this is done that was such a learning experience for me. Regardless, the hope was that this method would reduce the toxicities associated with a complete allogenic transplant while still benefiting the patient with GVT. Based on the data it certainly looks like he is able to meet both of these objectives. It was hard to compare his survival statistics as well. The numbers weren't bad but his patient numbers were small. Also, I happen to know from reviewing this study at the ANR in 2006 that his patients were ultra high risk. It included many n-myc amplified kids. To me it looked like the group was one of the hardest to cure when looking at them at diagnosis. The point is that this group, too, was not really comparable to the other two.
Both Dr. Yamashiro and Dr. Yanik also gave a review of the rationale behind single and tandem transplants. A couple of things were clear from these presentations. In the COG hands, a transplant was clearly better than no transplant (although they never used antibody for consolidation). Another thing that occurred to me that there is hope that a tandem transplant will be better than a single. From what was presented, early clinical data seems to lean that way. Also it was interesting to note that the toxicities did not seem to be any worse. Strangely enough, in some studies they were even better. Regardless, this data was presented at 3 year Event Free Survival and since it is not comparable to the others I don't really see the pointed in repeating them here. They are well published in prominent journals.
Finally was MSKCC's option of using antibodies for consolidation instead of transplant. Dr. Cheung used an entirely different measure in an entirely different patient population than the other groups. At first his 3 year survival curve of approximately 77% looked great until you started to pick apart exactly what was being measured. This isn't to say the Dr. Cheung was intentionally deceiving anyone. He is not sneaky as far as I am concerned. In fact, he sought me out and we discussed statistics at length (about 30 minutes). He genuinely believes his measure is the most important measuring stick of success. I understand that. I don't necessarily agree but I genuinely see his point that "event free" survival curves are nebulous at best. Regardless, as much as I fought for a comparable answer we did not have one. The MSKCC survival statistic was only based on survival. It did not include "events" or "relapses". It was survival - period. The population included the best subset of stage 4 and nmyc amplified kids over the age of 18 months. These patients were also only ones that responded to upfront therapy. In essence they were the best patients that had a history of clearly responding. It simply isn't comparable to anything else that we have seen. I like Sloan. I like the people. But, this statistics gave us absolutely no indication of whether their therapy is better or worse than any other.
Put in it's simplest terms. After they finished their presentation I asked the question of which treatment strategy was best. I think it was clear to everyone that there is absolutely no answer. There just isn't.
Finally, not one of these studies was shown at 5 years (mainly because the data was not available because the studies are not old enough.) That is a far better time period for us as parents to make a decision. I think everyone agrees upon that. A lot more shakes out over that time period.
The trick becomes, how do we use this information. Well, the good news is that even though all of this is extremely tricky and murky we were able to get to the bottom of a few rules that were agreed upon by everyone. There are answers amongst all of this mess.
Everyone seemed to have purpose. They just couldn't agree on how that purpose should be measured.
Well, before it escapes my mind I really want to talk about the conference. I know there are parents out there that are really curious as to what was said. I think one of the most interesting discussions concerned transplant options. We had a panel consisting of Dr. Bolotin, Dr. Yanik, Dr. Yamashiro, and Dr. Cheung. Each were responsible for representing a certain opinion on transplant. We discussed the new Topotecan containing single autologous transplant regimen from City of Hope, MIBG/transplant Combinations, tandem transplants, allogenic transplants and Sloan's option of no transplant at all.
Over all ,I though the discussion was very good. As one should expect it became very clear that there is no answer right now. There just isn't. I am not being sneaky, biased, or opinionated. There is simply no clear answer.
There are some general rules, however.
Tomorrow, I will hit upon some of the general rules that I think we established. Today I will hit upon why there is no clear answer between one decision and another. People will always continue to compare statistics from one institution to another. This is only relevant if the statistics that you are comparing are actually the same. I can tell you from the basis of our discussions at the conference none were using the same measure. I will explain.
Dr. Bolotin showed a survival curve for their Topotecan containing transplant. Ironically, you could not see a curve because it was a straight line at 100% survival. That seems the obvious choice doesn't it? Hold on? Her curve only included 8 patients and it was only for a period of 333 days. That is not long. That means the eight patients they studied were all transplanted sometime in the last 333 days and they were all surviving so far. I don't mean to shock anyone but that isn't surprising. First off, this transplant regimen only includes responders to upfront therapy. I would fully expect the vast majority of them to be responding at this point regardless of the treatment. It shows that City of Hope is a good transplant center but beyond that it really does not answer many questions. We need to wait another 5 years to look back on the data and see what an actual curve looks like then. In this case we are looking for lower toxicities and hopefully no reduction in survival. It is interesting to note that Topotecan could actually increase the survival in this regimen due to a mechanism of action that was totally not expected or anticipated. You will need to watch the video to find out more.
Dr. Yanik showed several curves but I will start with MIBG. I don't remember the exact survival percentage but it was in the neighborhood of 25 to 35% over 3 years. Would you believe that this could possibly be the best option? You see his data was event free survival. Not overall survival. So, many kids may be surviving that are not in this curve because they are taken off the curve for many different reasons. They are taken off for "events," like severe toxicities, relapse, etc. The good news is that we know that the "survivors" are doing fairly well. The other incredibly important thing to note is that these statistics also include the hardest patients to cure. You see, when this data was collected you could not be on an MIBG/transplant trial without having failed induction chemotherapy. These kids are the worst of the bunch and the hardest to cure. The fact that so many of them survived so far out is incredible. This study was also hard to get a handle on as many patients were treated at different dosing levels. Although the number of patients was good (nearly 80 or 90 if I remember correctly) it clearly was not comparable to some of the other options.
Dr. Yamashiro presented some data on allogenic transplants. It was this section that I probably learned the most about from the entire conference. Essentially the idea from an allogenic transplant is to create a graft versus tumor (GVT) effect. In this case you not only receive the benefits from a typical transplant but many also benefit from the GVT effect. In this scenario the donor cells not only reseed the marrow but the also attack tumor. It is very interesting. The problem with allogenic transplants is that the are extremely dangerous and come at a cost. His review showed a morbidity rate of a little over 30%. This means over 30% did not survive the allogenic transplant. The survival rates were not bad but we have to be concerned about at what cost. In an effort to reduce the morbidity Dr. Yamashiro started doing autologous transplants followed by a mini allogenic transplant. It is the science and technique of how this is done that was such a learning experience for me. Regardless, the hope was that this method would reduce the toxicities associated with a complete allogenic transplant while still benefiting the patient with GVT. Based on the data it certainly looks like he is able to meet both of these objectives. It was hard to compare his survival statistics as well. The numbers weren't bad but his patient numbers were small. Also, I happen to know from reviewing this study at the ANR in 2006 that his patients were ultra high risk. It included many n-myc amplified kids. To me it looked like the group was one of the hardest to cure when looking at them at diagnosis. The point is that this group, too, was not really comparable to the other two.
Both Dr. Yamashiro and Dr. Yanik also gave a review of the rationale behind single and tandem transplants. A couple of things were clear from these presentations. In the COG hands, a transplant was clearly better than no transplant (although they never used antibody for consolidation). Another thing that occurred to me that there is hope that a tandem transplant will be better than a single. From what was presented, early clinical data seems to lean that way. Also it was interesting to note that the toxicities did not seem to be any worse. Strangely enough, in some studies they were even better. Regardless, this data was presented at 3 year Event Free Survival and since it is not comparable to the others I don't really see the pointed in repeating them here. They are well published in prominent journals.
Finally was MSKCC's option of using antibodies for consolidation instead of transplant. Dr. Cheung used an entirely different measure in an entirely different patient population than the other groups. At first his 3 year survival curve of approximately 77% looked great until you started to pick apart exactly what was being measured. This isn't to say the Dr. Cheung was intentionally deceiving anyone. He is not sneaky as far as I am concerned. In fact, he sought me out and we discussed statistics at length (about 30 minutes). He genuinely believes his measure is the most important measuring stick of success. I understand that. I don't necessarily agree but I genuinely see his point that "event free" survival curves are nebulous at best. Regardless, as much as I fought for a comparable answer we did not have one. The MSKCC survival statistic was only based on survival. It did not include "events" or "relapses". It was survival - period. The population included the best subset of stage 4 and nmyc amplified kids over the age of 18 months. These patients were also only ones that responded to upfront therapy. In essence they were the best patients that had a history of clearly responding. It simply isn't comparable to anything else that we have seen. I like Sloan. I like the people. But, this statistics gave us absolutely no indication of whether their therapy is better or worse than any other.
Put in it's simplest terms. After they finished their presentation I asked the question of which treatment strategy was best. I think it was clear to everyone that there is absolutely no answer. There just isn't.
Finally, not one of these studies was shown at 5 years (mainly because the data was not available because the studies are not old enough.) That is a far better time period for us as parents to make a decision. I think everyone agrees upon that. A lot more shakes out over that time period.
The trick becomes, how do we use this information. Well, the good news is that even though all of this is extremely tricky and murky we were able to get to the bottom of a few rules that were agreed upon by everyone. There are answers amongst all of this mess.
Everyone seemed to have purpose. They just couldn't agree on how that purpose should be measured.
Wednesday, July 23, 2008
The purpose hunter
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.
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.
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.
Thursday, July 10, 2008
A Texican Hairless Twerp
A happy good morning to you. You may have remembered that yesterday I told you things were a little quiet around here without Sydney. Well, that did not last long and boy do I have a surprise for you. It goes back to last weekend. You see, we were double booked on Saturday night. For quite awhile we had planned to attend the Robertson's son Preston's birthday extravaganza. I don't want to brag about ourselves too much but we were even invited to the after party. The Robertson's are like family. It was an important occasion for us.
The problem was that at the last minute we also found out that Hayden (Graham's friend with neuroblastoma) was also having a head shaving party. We explained the concept to Graham. At the time he was very upset that we could not go to Hayden's for the head shaving party but was also not too disappointed with the idea that he would get to go to Chuck E. Cheese's. We promised him that we would let him shave his head for Hayden another time if he truly wanted to.
Everyday since, several times a day, Graham has asked when we were going to shave his head for Hayden. Due to some logistical problems it just never worked out on Monday or Tuesday. But, yesterday afternoon, me with my clippers and Graham with a smile, we got after it.
It did not take long and before you knew it we had our very own Texican Hairless Twerp.
Purpose apparently also comes in a hairless variety.Wednesday, July 9, 2008
1 shy of chaos
Good morning! I am actually sitting here typing next to the pool this morning. My blushing bride snatched my favorite spot on the couch and is snoozing away. I can only assume that she had a miserable night. I am quite comfortable here but I must admit that it is a little difficult to write here in the dark. For this reason, I had to postpone my diary entry until sun up.
All is well at the Dungan household. Of course, we miss our precious twerp leader but we know that she will be home soon - only two more sleeps. The others continue on. Both Graham and Ainsley had a superb day full of swimming and playing at the park. They are slowly beginning to adjust to their cluelessness in Sydney's absence. They are becoming much closer and, although still fighting like cats and dogs, seem to be enjoying each other's company when not in fisticuffs.
Lynley drug out her birthday celebration to yet another evening. Last night we went out with two of our close friends. Ordinarily we go out just as adults but due to a lack of willing martyrs we brought the kiddos along. They had a great time at dinner but felt less enthusiastic when the big girls decided to go clothing shopping. Here we were, two grown men carefully watching Ainsley and Graham to prevent any type of lawsuit from the store as the two girls frolicked through the rods of clothes. It was borderline abusive to my manhood but I managed.
Well, as you can see, nothing too much to report on the Dungan forefront. I know, it seems somewhat boring without the twerp princess. Soon we will have her back stirring things up again. I also have some big news to share in the very near future.
With hope and purpose.
All is well at the Dungan household. Of course, we miss our precious twerp leader but we know that she will be home soon - only two more sleeps. The others continue on. Both Graham and Ainsley had a superb day full of swimming and playing at the park. They are slowly beginning to adjust to their cluelessness in Sydney's absence. They are becoming much closer and, although still fighting like cats and dogs, seem to be enjoying each other's company when not in fisticuffs.
Lynley drug out her birthday celebration to yet another evening. Last night we went out with two of our close friends. Ordinarily we go out just as adults but due to a lack of willing martyrs we brought the kiddos along. They had a great time at dinner but felt less enthusiastic when the big girls decided to go clothing shopping. Here we were, two grown men carefully watching Ainsley and Graham to prevent any type of lawsuit from the store as the two girls frolicked through the rods of clothes. It was borderline abusive to my manhood but I managed.
Well, as you can see, nothing too much to report on the Dungan forefront. I know, it seems somewhat boring without the twerp princess. Soon we will have her back stirring things up again. I also have some big news to share in the very near future.
With hope and purpose.
Tuesday, July 8, 2008
Horse "back" riding
At dinner every night we sit around the table and one by one we each answer two questions. The first question is: What was the best part about your day? The second is: What was the worst part of your day? The answers to these questions often give us a clear picture of the highs and lows for each and everyone around the table. You know, you can real tell a lot about a person by listening to their highs and lows. It creates a pretty clear picture of where their mindset is. It can also be pretty funny.
Graham still seems to be more interested in telling stories. The best part of his day is always something that really happened. It is tangible. I.e. The best part of my day was swimming in the pool with Mommy and Daddy. The worst part of Graham's Day always seems to be something totally fictional - and, quite possible disgusting. It might be something like: "I was swinging between the buildings like Spiderman on my way to target. I saw two bad guys so I got 'em with my light sabre but I accidentally chopped my arm off." I guess as long as he has to make up a bad part of his day I think we are doing a pretty good job of raising a pretty happy kiddo, even if he does leave gross imagery floating around in your head.
Ainsley, on the other hand, seems to follow a different pattern. The best part of her day always seem to by copied from someone else at the table. On more creative days she might even go out on a limb and say that the best part of her day was playing. What is most funny is the worst part of Ainsley's day which falls into two categories. Either the worst part of her day was not spending enough time with Mommy and Daddy (this is a standard twerp suck-up answer designed at getting the parents softened up for ice cream after dinner.) or, more likely, the worst part of her day is a series of diatribes describing the endless abuses she sustained at Graham's hands. She just completely unloads. She mentions every thing she can think of. "The worst part of my day is when Graham pushed my out of the chair and then we he took my kinex away and then he hit me and when he wouldn't share with me and then when we took my blanky and when he hit me on my back and when he pushed me off the floaty boat." She truly makes it sound like she is the abused little step sister but she often forgets that she instigates the vast majority of these incidents. She simply loves trying to get him in trouble.
Last night was a little different without Sydney and while the worst part of all of our days were that Sydney was not there. We tried to imagine what the best part of Sydney's day was. I thought she probably went swimming. Others thought she may have gone fishing. Lynley thought she probably went horseback riding. Graham took to that immediately. That must be what Sydney was doing. How cool was that? He started imagining and describing how Sydney was riding the horse. He was excited. All of a sudden he stopped. "Why is she sitting on the horse backwards?" - Graham 2008
Can you figure out why?
She was horse back riding. Lynley and I had a thorough laugh. Playing best and worst often ends that way.
It is also a great way to see your purpose.
Graham still seems to be more interested in telling stories. The best part of his day is always something that really happened. It is tangible. I.e. The best part of my day was swimming in the pool with Mommy and Daddy. The worst part of Graham's Day always seems to be something totally fictional - and, quite possible disgusting. It might be something like: "I was swinging between the buildings like Spiderman on my way to target. I saw two bad guys so I got 'em with my light sabre but I accidentally chopped my arm off." I guess as long as he has to make up a bad part of his day I think we are doing a pretty good job of raising a pretty happy kiddo, even if he does leave gross imagery floating around in your head.
Ainsley, on the other hand, seems to follow a different pattern. The best part of her day always seem to by copied from someone else at the table. On more creative days she might even go out on a limb and say that the best part of her day was playing. What is most funny is the worst part of Ainsley's day which falls into two categories. Either the worst part of her day was not spending enough time with Mommy and Daddy (this is a standard twerp suck-up answer designed at getting the parents softened up for ice cream after dinner.) or, more likely, the worst part of her day is a series of diatribes describing the endless abuses she sustained at Graham's hands. She just completely unloads. She mentions every thing she can think of. "The worst part of my day is when Graham pushed my out of the chair and then we he took my kinex away and then he hit me and when he wouldn't share with me and then when we took my blanky and when he hit me on my back and when he pushed me off the floaty boat." She truly makes it sound like she is the abused little step sister but she often forgets that she instigates the vast majority of these incidents. She simply loves trying to get him in trouble.
Last night was a little different without Sydney and while the worst part of all of our days were that Sydney was not there. We tried to imagine what the best part of Sydney's day was. I thought she probably went swimming. Others thought she may have gone fishing. Lynley thought she probably went horseback riding. Graham took to that immediately. That must be what Sydney was doing. How cool was that? He started imagining and describing how Sydney was riding the horse. He was excited. All of a sudden he stopped. "Why is she sitting on the horse backwards?" - Graham 2008
Can you figure out why?
She was horse back riding. Lynley and I had a thorough laugh. Playing best and worst often ends that way.
It is also a great way to see your purpose.
Monday, July 7, 2008
A week of sanguinity
Well, she is off. Sydney has left us for an entire week of camp. I will, of course, miss her but I have to be honest. I am more excited for her than anything. This is one of those huge milestones in life. She is off at camp on her own. Wow.
I can remember back when she was 4 and 5 when she went to this camp for just a single day. Lynley and I were nervous wrecks. That was just eight hours. Lynley and I spent an entire day with our stomach in knots. If you remember, Sydney did much better than we did. Once again, she showed us what an incredibly self-sufficient little girl she is.
There is no doubt in my mind that is the way that she is right now. I am confident that she is having a great time. I am surprisingly calm and at peace. I guess you could say that I am full of sanguinity. I miss her but I know down deep in my heart that she is having a wonderful time. She is old enough and strong enough to care for herself. I have no fear that she is tearfully pining away for us - at least Lynley and I. However, I am pretty sure she will be mopey at some point thinking of her brother and sister.
Sydney is at Camp Sanguinity which is actually a camp at Camp John Marc. If you are curious as to where she is and what she will be doing all week you can read a little about it on the website at http://www.campjohnmarc.org/.
Now, Sydney might be fairing well but her brother and sister have lost their leader. They aren't quite sure what to do. Graham has tried to step up to the plate in the meantime but it is still pretty clear that they have no idea what to do without being told. Sydney was the source of their entertainment. She told them what to do, how to do it, and when. She had them trained. The closest analogy that I can think of to describe it is an ant colony. Normally the travel in orderly lines right behind each other. There is order. However, if you take your foot and drag it across the line all of a sudden the ants start milling around randomly in all different directions. They lose all sense of order and purpose. That is a little of what it is like for Sydney and Graham. The are wandering around aimlessly.
Going to bed last night was not easy. Ainsley was sure that the monsters would come and she is as positive as the sky is blue that it is Sydney that protects her from them every night. Ainsley being riled up only did the same for Graham and the next thing we knew we had two kiddos up and out of bed hiding from monsters. Eventually we got the both of them to sleep but it is clear that this has been a large adjustment for them.
A little of our purpose has left the building and we are all just trying to figure out what to do.
I can remember back when she was 4 and 5 when she went to this camp for just a single day. Lynley and I were nervous wrecks. That was just eight hours. Lynley and I spent an entire day with our stomach in knots. If you remember, Sydney did much better than we did. Once again, she showed us what an incredibly self-sufficient little girl she is.
There is no doubt in my mind that is the way that she is right now. I am confident that she is having a great time. I am surprisingly calm and at peace. I guess you could say that I am full of sanguinity. I miss her but I know down deep in my heart that she is having a wonderful time. She is old enough and strong enough to care for herself. I have no fear that she is tearfully pining away for us - at least Lynley and I. However, I am pretty sure she will be mopey at some point thinking of her brother and sister.
Sydney is at Camp Sanguinity which is actually a camp at Camp John Marc. If you are curious as to where she is and what she will be doing all week you can read a little about it on the website at http://www.campjohnmarc.org/.
Now, Sydney might be fairing well but her brother and sister have lost their leader. They aren't quite sure what to do. Graham has tried to step up to the plate in the meantime but it is still pretty clear that they have no idea what to do without being told. Sydney was the source of their entertainment. She told them what to do, how to do it, and when. She had them trained. The closest analogy that I can think of to describe it is an ant colony. Normally the travel in orderly lines right behind each other. There is order. However, if you take your foot and drag it across the line all of a sudden the ants start milling around randomly in all different directions. They lose all sense of order and purpose. That is a little of what it is like for Sydney and Graham. The are wandering around aimlessly.
Going to bed last night was not easy. Ainsley was sure that the monsters would come and she is as positive as the sky is blue that it is Sydney that protects her from them every night. Ainsley being riled up only did the same for Graham and the next thing we knew we had two kiddos up and out of bed hiding from monsters. Eventually we got the both of them to sleep but it is clear that this has been a large adjustment for them.
A little of our purpose has left the building and we are all just trying to figure out what to do.
Thursday, July 3, 2008
Her sickness or my mania - you pick
Ah, good morning. I have been sitting here for quite a while trying to figure out what to write. There are, of course, 1000 things I could be telling you about. I could tell you about our plans for the 4th of July parade or, even more interesting, about the fact that on Monday, Lynley's Birthday, Sydney will be leaving for a week to Camp Sanguinity. I could tell you that Sydney went to the dentist yesterday and that she is missing a tooth (canine) that never came in. I could also finally write about ABT-751 and its combination with Fenretinide. I could probably even apologize for how technical my talk about Fenretinide was. For fun, I could even tell you all about the neat things I am working on in the world of neuroblastoma. But, as exciting as all of that could be, it is not what I really want to talk about.
You see, I am still on this Sydney "not feeling well" thing. By the way, this is how manias are started. Regardless, it is probably the most interesting subject to me. I received some helpful advice from an anonymous poster to my blog. It is nice to know that we have a social worker in our corner. For better or worse, we need it. I guess we probably all do. Raising kiddos certainly travels the razor's edge between complete joy and utter madness.
So, here is what happened yesterday. Yesterday, after Sydney woke up complaining of lethargy and feeling sick I had another heart to heart with her. Ironically it followed along much of the same lines as my anonymous poster suggested. I told her that if she felt that sick she needed to go back to bed were she would stay the rest of the day. I also used some bait. I told her that there were some fun plans for the day and it was sad that she would be sick and miss it. Within minutes she experienced a full recovery and, crud, I was left having to plan something special. (I hate when I do that.)
On the way downstairs I had another heart to heart with her. I really wanted to get to the bottom of it. I felt she needed a more thorough discussion on telling the truth about how we feel. I felt this was as good an opportunity as any. Besides, she is now more capable than ever to have this particular rational discussion. I explained that I wanted her to be honest with me. I told her that if she wanted more of my attention (or Mommy's) that she just had to ask. I explained that if she just wanted to lie in bed because she had not woken up or because she was lazy that she needed to be honest with us. I explained that telling us that she was sick when she wasn't was wrong and very bad. I explained that if we gave her medicine for a sickness that she did not really have that the medicine could actually make her sick. I explained side effects in a way that she could understand. Some medicines make you sleepy, some make you sick to your stomach, and some even make you lose your hair. I was very careful in my explanation not to scare her but I wanted to drive the point home. I wanted her to understand that faking an ailment was not the answer. By the look in her eyes and her feedback I was confident that she got the point. She understood. She also came clean about some of her past "sicknesses."
At the last minute we lined the kiddos and Miss Claudia up to head out to Pump it Up for a morning of fun running and jumping through the largest collection of bouncy houses and inflatable obstacle courses I have ever seen. They spent over 2 hours wearing themselves out. It wore Ainsley out so completely that she ended up sleeping for the last 45 minutes or so. In the end, Sydney made it through all of the play but ended up busting her lip up pretty thoroughly in the last 10 minutes. Other than the necessary kisses and an ice pack Sydney was fine when she got home. Ainsley's temperature, however, was creeping up. I am guessing that she has not fully recovered from the day before. Graham, as usual, was just happy to be there. We put Graham and Ainsley down for a nap and Sydney continued to play and read the afternoon away.
By evening, Sydney was complaining about being tired. That was not something that sat particularly well with Lynley or I. As Sydney talked about her day she kept mentioning how tired she was. It left Lynley unsettled and me curious as to whether or not she was replacing sickness with tiredness. To be honest, I like the tiredness even less than the sickness. It will be another day of identifying what is going on. I am hopeful that after a full night's rest she will be ready and raring to go. It will be interesting to see if she is so high energy again. Was she tired from all of the play at Pump it Up? Was she tired because she was sick? Is she tired because she wanted to snuggle on Daddy's lap? I don't now the answer. I do know however, that lethargy is also a side effect of cancer.
We need a break from these constant ailments, owies, and lethargy.
I will be sneakily purposeful today.
You see, I am still on this Sydney "not feeling well" thing. By the way, this is how manias are started. Regardless, it is probably the most interesting subject to me. I received some helpful advice from an anonymous poster to my blog. It is nice to know that we have a social worker in our corner. For better or worse, we need it. I guess we probably all do. Raising kiddos certainly travels the razor's edge between complete joy and utter madness.
So, here is what happened yesterday. Yesterday, after Sydney woke up complaining of lethargy and feeling sick I had another heart to heart with her. Ironically it followed along much of the same lines as my anonymous poster suggested. I told her that if she felt that sick she needed to go back to bed were she would stay the rest of the day. I also used some bait. I told her that there were some fun plans for the day and it was sad that she would be sick and miss it. Within minutes she experienced a full recovery and, crud, I was left having to plan something special. (I hate when I do that.)
On the way downstairs I had another heart to heart with her. I really wanted to get to the bottom of it. I felt she needed a more thorough discussion on telling the truth about how we feel. I felt this was as good an opportunity as any. Besides, she is now more capable than ever to have this particular rational discussion. I explained that I wanted her to be honest with me. I told her that if she wanted more of my attention (or Mommy's) that she just had to ask. I explained that if she just wanted to lie in bed because she had not woken up or because she was lazy that she needed to be honest with us. I explained that telling us that she was sick when she wasn't was wrong and very bad. I explained that if we gave her medicine for a sickness that she did not really have that the medicine could actually make her sick. I explained side effects in a way that she could understand. Some medicines make you sleepy, some make you sick to your stomach, and some even make you lose your hair. I was very careful in my explanation not to scare her but I wanted to drive the point home. I wanted her to understand that faking an ailment was not the answer. By the look in her eyes and her feedback I was confident that she got the point. She understood. She also came clean about some of her past "sicknesses."
At the last minute we lined the kiddos and Miss Claudia up to head out to Pump it Up for a morning of fun running and jumping through the largest collection of bouncy houses and inflatable obstacle courses I have ever seen. They spent over 2 hours wearing themselves out. It wore Ainsley out so completely that she ended up sleeping for the last 45 minutes or so. In the end, Sydney made it through all of the play but ended up busting her lip up pretty thoroughly in the last 10 minutes. Other than the necessary kisses and an ice pack Sydney was fine when she got home. Ainsley's temperature, however, was creeping up. I am guessing that she has not fully recovered from the day before. Graham, as usual, was just happy to be there. We put Graham and Ainsley down for a nap and Sydney continued to play and read the afternoon away.
By evening, Sydney was complaining about being tired. That was not something that sat particularly well with Lynley or I. As Sydney talked about her day she kept mentioning how tired she was. It left Lynley unsettled and me curious as to whether or not she was replacing sickness with tiredness. To be honest, I like the tiredness even less than the sickness. It will be another day of identifying what is going on. I am hopeful that after a full night's rest she will be ready and raring to go. It will be interesting to see if she is so high energy again. Was she tired from all of the play at Pump it Up? Was she tired because she was sick? Is she tired because she wanted to snuggle on Daddy's lap? I don't now the answer. I do know however, that lethargy is also a side effect of cancer.
We need a break from these constant ailments, owies, and lethargy.
I will be sneakily purposeful today.
Wednesday, July 2, 2008
Identifying the cause.
Putting your finger on an ailment of a child who has spent the better part of her life with serious sickness is not easy. Ainsley on the other hand is more transparent. Every time she doesn't want to do something she says her tummy hurts or that she feels sick. When she is truly sick she throws up. When she is finished throwing up she is not sick anymore. It is simple and clear cut. By the way, she is finished throwing up - complete recovery to twerptitude.
Sydney, on the other hand, is a far more sophisticated faker that was mastered her technique through years of first-hand, hard-earned experience. Lately, these occurrences of "sickness" or "extreme pain" have been more common. The trick for us is to figure out what is real and what is motivated by some deep-seated desire for more attention, emotional support, or for whatever it is that she is looking for.
Whenever one of these episodes raises its ugly head I am always looking for the root cause. As of late I know that she is going through some changes. For example, one of her frustrations is with Miss Claudia. Miss Claudia has some different rules than Mommy and Daddy do. These rules are for good reason and they give Claudia adequate control of the children so that she can manage them. Her rules are like ones you would see in a school. You have to ask to go to the bathroom. You can't go running willy nilly through the halls. You can't leave the room whenever you want to. You can't go into the back yard by yourself without the rest of the kiddos. You see, all reasonable requests for someone that has been charged with caring for several of you kiddos. She assumes some liability to ensure there safety. We certainly get it. Sydney does not. She thinks they are "baby rules." We, of course, support Claudia's rules and Sydney finds it unfair that we are not taking her side. Coincidentally ,it seems to also coordinate with Sydney's spells of sickness and gross injury.
The trick is proving it. How do we know it is this and not neuroblastoma? What are the tools that we parents have to get to the bottom of it? I knew I should have studied more psychology in college. Regardless, last night I tried talking to her directly about it. We will see what today holds. Any ideas?
Purposefully scheming.
Sydney, on the other hand, is a far more sophisticated faker that was mastered her technique through years of first-hand, hard-earned experience. Lately, these occurrences of "sickness" or "extreme pain" have been more common. The trick for us is to figure out what is real and what is motivated by some deep-seated desire for more attention, emotional support, or for whatever it is that she is looking for.
Whenever one of these episodes raises its ugly head I am always looking for the root cause. As of late I know that she is going through some changes. For example, one of her frustrations is with Miss Claudia. Miss Claudia has some different rules than Mommy and Daddy do. These rules are for good reason and they give Claudia adequate control of the children so that she can manage them. Her rules are like ones you would see in a school. You have to ask to go to the bathroom. You can't go running willy nilly through the halls. You can't leave the room whenever you want to. You can't go into the back yard by yourself without the rest of the kiddos. You see, all reasonable requests for someone that has been charged with caring for several of you kiddos. She assumes some liability to ensure there safety. We certainly get it. Sydney does not. She thinks they are "baby rules." We, of course, support Claudia's rules and Sydney finds it unfair that we are not taking her side. Coincidentally ,it seems to also coordinate with Sydney's spells of sickness and gross injury.
The trick is proving it. How do we know it is this and not neuroblastoma? What are the tools that we parents have to get to the bottom of it? I knew I should have studied more psychology in college. Regardless, last night I tried talking to her directly about it. We will see what today holds. Any ideas?
Purposefully scheming.
Tuesday, July 1, 2008
Hidden Disease
There is something lurking amongst us. I had noticed over the last day or so that Sydney was extremely lethargic. She did not wake up yesterday morning until well after 8:00 AM. That is unusual for her. Although she is always my latest sleeper it is very strange to see her snooze past about 7:15. Throughout the day she was pretty argumentative. Her listener, the magical device that makes kids listen when their mom or dad tells them to do something, was broken and she had a tough time following even the simplest requests. Hearing from the roars downstairs as I worked, it was also clear that she was not coping very well. I suspected some kind of sickness.
Kids are kind of like cars. Although they don't have a dipstick, they often act like one and that is a pretty clear indication that they are not feeling quite up to par. This is Sydney's true tell sign. She becomes argumentative and has difficulty coping. By early afternoon she was truly out of sorts and had added significant lethargy to her repertoire of sickness showing signs.
With the other two kiddos acting just as normal as ever I was becoming a little worried if I am being honest. She had no normal outward signs of sickness - no cough, no sniffles. It was worrisome. Those things I can put a finger on. It is those hidden sicknesses that I worry about. I have to admit that I was beginning to have thoughts about neuroblastoma. What can I say? It is the world we live in. It is what we have come to expect when we can't put our finger on the answer.
In the middle of the night we had several visits to our bed. Although Sydney ended up in our bed next to me, she was not the only one. This morning I woke to hearing Ainsley crying in the hallway. She felt like she was going to throw up. This probably sounds horrible, but I have never been more relieved. Neuroblastoma rarely travels in packs.
I am sorry for Ainsley, though. In fact, I just had to put down the pencil and paper down as she threw up. I had better get to Daddying.
I have a full day of purpose ahead.
Kids are kind of like cars. Although they don't have a dipstick, they often act like one and that is a pretty clear indication that they are not feeling quite up to par. This is Sydney's true tell sign. She becomes argumentative and has difficulty coping. By early afternoon she was truly out of sorts and had added significant lethargy to her repertoire of sickness showing signs.
With the other two kiddos acting just as normal as ever I was becoming a little worried if I am being honest. She had no normal outward signs of sickness - no cough, no sniffles. It was worrisome. Those things I can put a finger on. It is those hidden sicknesses that I worry about. I have to admit that I was beginning to have thoughts about neuroblastoma. What can I say? It is the world we live in. It is what we have come to expect when we can't put our finger on the answer.
In the middle of the night we had several visits to our bed. Although Sydney ended up in our bed next to me, she was not the only one. This morning I woke to hearing Ainsley crying in the hallway. She felt like she was going to throw up. This probably sounds horrible, but I have never been more relieved. Neuroblastoma rarely travels in packs.
I am sorry for Ainsley, though. In fact, I just had to put down the pencil and paper down as she threw up. I had better get to Daddying.
I have a full day of purpose ahead.
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