Good morning! Well, we successfully navigated another busy weekend at the Dungan household. This one was jam packed with a litany of birthday parties and beginning of the year school parties. Most importantly, this weekend has been highlighted by a visit from Grammie (my grandmother and the kiddo's great grandmother) We only get the opportunity to see Grammie once or twice per year so this is always a treat for us. We try to get in as much Grammie face time as we possibly can. I am happy to say that even with our busy party schedules we were able to spend some great quality time with her.
On Saturday morning we hoofed it over to visit with her at my mother's house. There they had adequate opportunity to terrorize my mother's house before we left for a an hour of grocery shopping, etc. While Graham and Ainsley napped that afternoon. Sydney and Lynley found themselves back over at DeeDee's watching movies and baking cookies with Grammie. The late afternoon was dominated by a 2nd grade class swim party. The evening brought dinner out and, for me, a lap full of 22 ounces of beer courtesy of Graham. I smelled like a brewery which, all in all, was not that bad after I finished it's replacement.
Sunday brought some more time with Grammie. We took a load of crafts and another movie over. We spent the better part of the morning and early afternoon pestering Grammie. It doesn't get much better than that. I am quite sure she needed a nap after our departure. The Dunganlets are tiring - even just to watch. In the afternoon we escaped to a birthday party full of go carts and carnival rides only to race back home for dinner with Grammie over at our house. I will tell you. She is going to need a vacation from this vacation.
So, here, we are. Back, facing a brand new week. It will be another busy one but that is just how we seem to like it.
That is how purpose works. The more time you spend on it, the greater the rewards.
Monday, August 31, 2009
Friday, August 28, 2009
Taken for granted?
Wow, this week has absolutely flown by. To say it has been busy would be an understatement. Both personally and professionally, it has been full throttle. I tell you this to prepare you. Ever since we have been out of treatment, none of us have been accustomed to anything more than the occasional exciting bit of news. I mean, at best, a single newsworthy announcement comes out of my diary per week. Let's face it, we already had one piece of life altering news this week when we discovered that "Zachawy Wogers" was in Ainsley's class. Who would be expecting another earth shattering announcement out of my mouth this week?
I am quite sure that everyone was happy to be enjoying a break from my "announcements."
Well, I have buried this one long enough.
It concerns the Dudely, A.K.A Graham Watson "The Crusher" Dungan. Now, I should preface this with a review of Graham. Graham is sweet and honest. I have often described him as the gentlest soul I have ever met. Much to my chagrin he is also every teacher's wildest dream. He is polite and kind - clearly "almost" unfailingly. If you look up 'good boy' in the dictionary, it contains this reference - see Graham Dungan. I am not pulling shots. I am not misleading you. Anyone that knows Graham will attest to his incredible soul. It is who he is.
You see, "normal" kids get green stickers ( a sign of good behavior at SCS) in their notebooks everyday. On occasion they may get a blue or a yellow sticker but a calendar full of green stickers is the mark of a good kiddo. Sydney was this way. Her calendars were a sea of green with the occasional speckle of blue or yellow.
Graham, however, is on an entirely different level when it comes to this type of behavior. His standard of living exists in a sea of blue stickers. This is the kiddo that all of the other parents talk about. You know, the goody, goody. The one always helping others - always thinking of others before his or her self. We are talking a level of good-dom that is almost sickening.
That is my son, Graham.
Imagine my surprise on Tuesday when I opened his folder to find a yellow sticker and these words written in red ink:
It wasn't and he got two in return.
I think we have now established that hitting isn't funny - even in play.
When I went in the next morning to see if I could get the full story I found his teacher was as taken back as we were with the incident. No one really knew what to say. I can tell you that he spent an entire night in timeout. The good news? For whatever reason, he snapped right back to himself. He has followed this experience with two more days of perfect blue sticker behavior.
Is this what we have to expect from the Grahamster. Must he have an incident every year just to get it out of his system?
I suppose I should be happy that it is better than his little pantsing episode last year. Perhaps this is just Graham's way of saying, yep, I am good but don't get too complacent. Don't take me for granted.
It is always a good to remember not to take your purpii for granted.
I am quite sure that everyone was happy to be enjoying a break from my "announcements."
Well, I have buried this one long enough.
It concerns the Dudely, A.K.A Graham Watson "The Crusher" Dungan. Now, I should preface this with a review of Graham. Graham is sweet and honest. I have often described him as the gentlest soul I have ever met. Much to my chagrin he is also every teacher's wildest dream. He is polite and kind - clearly "almost" unfailingly. If you look up 'good boy' in the dictionary, it contains this reference - see Graham Dungan. I am not pulling shots. I am not misleading you. Anyone that knows Graham will attest to his incredible soul. It is who he is.
You see, "normal" kids get green stickers ( a sign of good behavior at SCS) in their notebooks everyday. On occasion they may get a blue or a yellow sticker but a calendar full of green stickers is the mark of a good kiddo. Sydney was this way. Her calendars were a sea of green with the occasional speckle of blue or yellow.
Graham, however, is on an entirely different level when it comes to this type of behavior. His standard of living exists in a sea of blue stickers. This is the kiddo that all of the other parents talk about. You know, the goody, goody. The one always helping others - always thinking of others before his or her self. We are talking a level of good-dom that is almost sickening.
That is my son, Graham.
Imagine my surprise on Tuesday when I opened his folder to find a yellow sticker and these words written in red ink:
hit friendTo say I was shocked would be yet another understatement. It did not get better from there. It turns out he hit the boy several times - once in the face. I was in shock. I discussed this with him at length. It turns out that Graham thought he was being funny. I know, likely excuse, but with Graham (being unfailingly honest) you have to consider these things at face value. Apparently this all started with some spanking. While I really don't want to discuss my son and the spanking of other boys it seems this was the case. They thought it was funny to be spanking each other. For some reason, Graham also thought it would be funny to punch this other boy in the nose.
It wasn't and he got two in return.
I think we have now established that hitting isn't funny - even in play.
When I went in the next morning to see if I could get the full story I found his teacher was as taken back as we were with the incident. No one really knew what to say. I can tell you that he spent an entire night in timeout. The good news? For whatever reason, he snapped right back to himself. He has followed this experience with two more days of perfect blue sticker behavior.
Is this what we have to expect from the Grahamster. Must he have an incident every year just to get it out of his system?
I suppose I should be happy that it is better than his little pantsing episode last year. Perhaps this is just Graham's way of saying, yep, I am good but don't get too complacent. Don't take me for granted.
It is always a good to remember not to take your purpii for granted.
Thursday, August 27, 2009
TPI-287 on my radar
Good morning! Aaargh! I am way behind. I sit behind a mountain of email and I am drowning. Email is a good thing but my problem is that I like to really answer every one in detail. I am not a copy and paster. I try and answer each email individually. This means it can take a significant amount of time to get through them. Earlier this week I poked my head out of my secret little world to do some advertising for the neuroblastoma seminar that the Neuroblastoma Foundation had yesterday and that seemed to open the flood gates of questions. Don't get me wrong. I love answering them. I am just at least a day or 2 behind. If you have an email sitting in my inbox please know that I will get to it.
The good news is that, aside from a few small technical difficulties on my part, the seminar went very well. I hope to have a video up by the end of the week. The TPI-287 study was one that I knew about but I did not have the level of knowledge that I felt comfortable sharing with other people. So, for this reason, it was a learning experience for me as well. I was extremely pleased to learn more about it. I can tell you that I certainly have more confidence in it as a potentially therapeutic option. There I went and did it. I used the term therapeutic in reference to a phase 1 trial. I am sure the human rights protectionists and bioethicists now have me on their hit list. Well, I don't care. Frankly, if you have a phase 1 trial that has already shown some significant activity in its first and a "half" cohorts of patients it is worth considering from a therapeutic standpoint - just don't forget to look at the potential side effects.
That was the point that stayed with me. I was skeptical going into this (as I am with all trials) especially considering the fact that this was a taxane, a class of drug with questionable activity in neuroblastoma. However, this one is special. It addresses many of the issues related to neuroblastoma resistance to this class of drug. That did catch my attention and the preclinical activity did seem pretty impressive. Usually I can tear the preclinical work down. IE. they weren't using good enough cell lines, the oxygen tension was too high, the drugs were tested well above potential therapeutic levels, etc. Bottom line, I was prepared to delve further into these questions.
However, once I saw the responses in patients, I must admit that I threw much of that by the wayside. You see, my opinion is this. If you have activity in kids with high risk relapsed and progressing neuroblastoma, does the preclinical work in petri dishes and lab rats really matter? In my mind, only if the drug cracked the petri dish or killed the rat and in neither of these cases did it do that. It is for this reason that I found myself chalking this trial up to a "consider." It should be on people's radar. I will let the seminar speak for itself and I will be sure to post a link once it gets through editing - yes, I have to do that too.
Purpose abounds!
The good news is that, aside from a few small technical difficulties on my part, the seminar went very well. I hope to have a video up by the end of the week. The TPI-287 study was one that I knew about but I did not have the level of knowledge that I felt comfortable sharing with other people. So, for this reason, it was a learning experience for me as well. I was extremely pleased to learn more about it. I can tell you that I certainly have more confidence in it as a potentially therapeutic option. There I went and did it. I used the term therapeutic in reference to a phase 1 trial. I am sure the human rights protectionists and bioethicists now have me on their hit list. Well, I don't care. Frankly, if you have a phase 1 trial that has already shown some significant activity in its first and a "half" cohorts of patients it is worth considering from a therapeutic standpoint - just don't forget to look at the potential side effects.
That was the point that stayed with me. I was skeptical going into this (as I am with all trials) especially considering the fact that this was a taxane, a class of drug with questionable activity in neuroblastoma. However, this one is special. It addresses many of the issues related to neuroblastoma resistance to this class of drug. That did catch my attention and the preclinical activity did seem pretty impressive. Usually I can tear the preclinical work down. IE. they weren't using good enough cell lines, the oxygen tension was too high, the drugs were tested well above potential therapeutic levels, etc. Bottom line, I was prepared to delve further into these questions.
However, once I saw the responses in patients, I must admit that I threw much of that by the wayside. You see, my opinion is this. If you have activity in kids with high risk relapsed and progressing neuroblastoma, does the preclinical work in petri dishes and lab rats really matter? In my mind, only if the drug cracked the petri dish or killed the rat and in neither of these cases did it do that. It is for this reason that I found myself chalking this trial up to a "consider." It should be on people's radar. I will let the seminar speak for itself and I will be sure to post a link once it gets through editing - yes, I have to do that too.
Purpose abounds!
Wednesday, August 26, 2009
The Day the Earth Stood Still
On Monday, the solar system must have been in perfect alignment. No. That is not strong enough. All of the stars and galaxies must have been aligned as well. It was the day, the impossible happened.
Ainsley would not let us walk her to class. Being in Pre K now, she is much too big for that. The problem is that I am not. None the less, I let her walk about 40 paces in front of me and act like I am walking Graham to class. Thankfully, his classroom is right up the hall from hers and he is not nearly as independent. This system seems to work.
None the less, there I was on Monday morning, walking down the hallway with the Dudely. Ainsley was out in front, as expected, meandering down the hall. I could barely make her head and feet out above and below her light blue Tinkerbell backpack. As Graham was putting his backpack up I was approached by the Rogers. You know, the infamous ones. The parents of "Jermy" and "Zachawy Wogers". The had a huge smile on their faces.
It turned out that Heather started working at the upper campus. That meant it only made sense to have both of their boys at SCS. That meant Zachary Rogers was now at our school. I flashed my eyes down the hall. There I found little miss Ainsley Eames with the biggest smile I have ever seen on her face. It was true. Zachary Rogers was in her class. Yes, he was starting a week late in her class but, there he was in his little light blue shirt and his dark blue shorts.
In Ainsley terms, this was not only her best day but this may gone down as the best day in the history of the world.
I, on the other hand, am not quite sure how I feel. On one hand, I could not be happier for my daughter. After all, this is the love of her little life. On the other hand, this is my future son-in-law. He needs to be kept at a proper distance until he is at least 30.
Boys!
It has begun.
Now my daughter thinks she has purpose.
Ainsley would not let us walk her to class. Being in Pre K now, she is much too big for that. The problem is that I am not. None the less, I let her walk about 40 paces in front of me and act like I am walking Graham to class. Thankfully, his classroom is right up the hall from hers and he is not nearly as independent. This system seems to work.
None the less, there I was on Monday morning, walking down the hallway with the Dudely. Ainsley was out in front, as expected, meandering down the hall. I could barely make her head and feet out above and below her light blue Tinkerbell backpack. As Graham was putting his backpack up I was approached by the Rogers. You know, the infamous ones. The parents of "Jermy" and "Zachawy Wogers". The had a huge smile on their faces.
It turned out that Heather started working at the upper campus. That meant it only made sense to have both of their boys at SCS. That meant Zachary Rogers was now at our school. I flashed my eyes down the hall. There I found little miss Ainsley Eames with the biggest smile I have ever seen on her face. It was true. Zachary Rogers was in her class. Yes, he was starting a week late in her class but, there he was in his little light blue shirt and his dark blue shorts.
In Ainsley terms, this was not only her best day but this may gone down as the best day in the history of the world.
I, on the other hand, am not quite sure how I feel. On one hand, I could not be happier for my daughter. After all, this is the love of her little life. On the other hand, this is my future son-in-law. He needs to be kept at a proper distance until he is at least 30.
Boys!
It has begun.
Now my daughter thinks she has purpose.
Tuesday, August 25, 2009
Seminar on TPI-287 in Neuroblastoma and Medulloblastoma
I have been a complete failure. I have neglected to mention this in my diary until now. Tomorrow at 12 PM CST I will be conducting an online seminar for the Neuroblastoma Foundation on the recently opened "Phase 1 Trial of TPI 287 as a Single Agent and in Combination with Temozolomide in Patients with Refractory or Recurrent Neuroblastoma or Medulloblastoma." The online seminar is specifically for parents and caregivers of children with neuroblastoma and medulloblastoma who are interested in finding out more information regarding this trial. The seminar is free and you can sign up here:
https://www2.gotomeeting.com/register/601120458
We originally came up with the idea of this online seminar while I was in Washington D.C. at the PRPMP meeting. I sat on several panels with Dr. Giselle Sholler. We shared conflicts of interest on several of the studies and, therefore, found ourselves outside in the hallway discussing various trials. After talking about this study with her, I thought it would be helpful to provide this information to other parents. During the seminar Dr. Sholler will be covering information about the preclinical data supporting her work that led to this trial. She will also cover information regarding the trial and its eligibility requirements. In addition, we will try to tease out information related to who this study may be most appropriate for and when you might consider it for your child. Finally, I also hope to have some parents on hand whose children have gone through this study to give us an idea of what can be expected.
The seminar ought to be very interesting and it is covering a topic that is important to neuroblastoma - drug resistance. TPI 287 is a proprietary next-generation taxane. The compound was designed to overcome multiple drug resistance in solid tumors that are innately resistant to taxane therapy (like neuroblastoma) or have become resistant to taxanes following exposure to chemotherapy drugs. In preclinical testing, TPI 287 demonstrated the ability to inhibit tumor cell growth in a number of in vitro cell lines and has shown inhibition of human tumor growth in certain animal xenograft models when tested against standard comparative agents. All in all, it is another agent that offers some hope in a world that can sometimes be lacking for those with relapsed or refractory neuroblastoma and medulloblastoma.
I genuinely hope to see you online tomorrow and I apologize for the late notice in publishing the information in my blog.
My timing may be bad but my purpose is still in the right place.
https://www2.gotomeeting.com/register/601120458
We originally came up with the idea of this online seminar while I was in Washington D.C. at the PRPMP meeting. I sat on several panels with Dr. Giselle Sholler. We shared conflicts of interest on several of the studies and, therefore, found ourselves outside in the hallway discussing various trials. After talking about this study with her, I thought it would be helpful to provide this information to other parents. During the seminar Dr. Sholler will be covering information about the preclinical data supporting her work that led to this trial. She will also cover information regarding the trial and its eligibility requirements. In addition, we will try to tease out information related to who this study may be most appropriate for and when you might consider it for your child. Finally, I also hope to have some parents on hand whose children have gone through this study to give us an idea of what can be expected.
The seminar ought to be very interesting and it is covering a topic that is important to neuroblastoma - drug resistance. TPI 287 is a proprietary next-generation taxane. The compound was designed to overcome multiple drug resistance in solid tumors that are innately resistant to taxane therapy (like neuroblastoma) or have become resistant to taxanes following exposure to chemotherapy drugs. In preclinical testing, TPI 287 demonstrated the ability to inhibit tumor cell growth in a number of in vitro cell lines and has shown inhibition of human tumor growth in certain animal xenograft models when tested against standard comparative agents. All in all, it is another agent that offers some hope in a world that can sometimes be lacking for those with relapsed or refractory neuroblastoma and medulloblastoma.
I genuinely hope to see you online tomorrow and I apologize for the late notice in publishing the information in my blog.
My timing may be bad but my purpose is still in the right place.
Monday, August 24, 2009
Kids Say the Darndest Things
Good morning! Well, I will tell you, it was one busy jam packed weekend. Some friends were visiting from out of town and we did our best to give them the grand tour. Now, when I say we, I quite literally mean it. The star guest was almost 3 year old Trey and our kiddos goal was to ensure he had one spectacular time. On Saturday morning, the whole crew got together for a picnic breakfast at the Botanical Gardens. That was then closely followed by a jaunt through the Japanese gardens. This is one of the kiddos favorite excursions and they had an absolute blast. For them it is much less about the flora and much more about the fauna but, none the less, they had a great time showing Trey every fish, lizard, and squirrel they could find. Much to their delight their was even a discovery of a litter of baby kittens. This excursion was then followed by swimming at the pool and then dinner at Uncle Julio's.
For Graham and Sydney, the dinner would be followed by an overnight stay with our guests at DeeDee's house. It had originally been planned for the two boys to bond, Trey and Graham, but Sydney developed such a big sister bond with Trey it was obvious that she had to be a part of the adventure. Sydney did a great job entertaining Trey. She truly was a great big sister. Ironically, I don't think Graham really spent even a single minute playing with Trey. Frankly, with the bond Sydney and Trey had developed I don't think he even had an opportunity. It was okay for him though. He was glad to be with his DeeDee.
Sunday did not slow down. It started with a large breakfast which was then followed by a trip to the zoo. Almost four hours of that was enough. Even I was in need of a small nap after that. It was necessary because our next trip was right around the corner - a trip to LaGrave stadium and a night of minor league baseball with the Fort Worth Cats. It would be an understatement to say we were not completely worn out by the end of this last adventure. It was certainly a busy weekend. We hope Trey had a good time.
Off topic, on the way home we passed by a cemetery. For some reason Graham felt it was necessary to tell us all about it:
Keep it simple.
In a way, that is what purpose is all about.
For Graham and Sydney, the dinner would be followed by an overnight stay with our guests at DeeDee's house. It had originally been planned for the two boys to bond, Trey and Graham, but Sydney developed such a big sister bond with Trey it was obvious that she had to be a part of the adventure. Sydney did a great job entertaining Trey. She truly was a great big sister. Ironically, I don't think Graham really spent even a single minute playing with Trey. Frankly, with the bond Sydney and Trey had developed I don't think he even had an opportunity. It was okay for him though. He was glad to be with his DeeDee.
Sunday did not slow down. It started with a large breakfast which was then followed by a trip to the zoo. Almost four hours of that was enough. Even I was in need of a small nap after that. It was necessary because our next trip was right around the corner - a trip to LaGrave stadium and a night of minor league baseball with the Fort Worth Cats. It would be an understatement to say we were not completely worn out by the end of this last adventure. It was certainly a busy weekend. We hope Trey had a good time.
Off topic, on the way home we passed by a cemetery. For some reason Graham felt it was necessary to tell us all about it:
That is were you go to die. They dig a hole. Put you in it. Cover you up with dirt and put a rock on top of you.I am always amazed at the kiddos' observations. Life to them is so clear- so black and white. Through there eyes life is so simple and clear. Over time, I always seem to forget that. Life always seems to get in the way. I get busy with work and deadlines and other useless monotony and I often get so wrapped up that I forget what is really important.
Keep it simple.
In a way, that is what purpose is all about.
Friday, August 21, 2009
First Week Tribute
Well, it looks like we are going to make it through the first week of school. As anticipated, Graham and Sydney have slipped back into routine almost without notice. It was as if there was no transition for them. The change was fluid.
Ainsley is a bit of a quandary. I can't say that she has not transitioned well. In fact, nothing could be further from the truth. From what we can tell, she is assimilating nicely into her new environment. By all outward appearances you would think that everything was perfect. However, it is understanding her view of the world that has left us rolling over the last few days. Kid's have the greatest perspective.
Ainsley, do you like this school or your old one better?
Ainsley, what did you learn today?
Lynley has really enjoyed this new slide show software and has now developed yet another masterpiece of the first day of school. I don't know how long her picture infatuation will last but I will be glad to share as long as she keeps making them.
Have a great weekend.
I will be chasing purpose.
Ainsley is a bit of a quandary. I can't say that she has not transitioned well. In fact, nothing could be further from the truth. From what we can tell, she is assimilating nicely into her new environment. By all outward appearances you would think that everything was perfect. However, it is understanding her view of the world that has left us rolling over the last few days. Kid's have the greatest perspective.
Ainsley, do you like this school or your old one better?
I like my new school much better. They have better snacks.Ainsley, what was the best part of your day?
I didn't even get in trouble.Ainsley, do you like your new friends?
I don't have any. Well, there is this one boy who is my best friend but I don't know his name?What is your favorite part of school?
Jeremy goes there and I get to see Zachary.(Zachary is the love of her life from her old school. Zachary is still going to the other school but he comes with his brother everyday to drop him off.)
Ainsley, what did you learn today?
Nothing.Really?
Yes, I still don't know that boys name.I am beginning to see a theme here - boys. I told you this one was going to be a challenge.
Lynley has really enjoyed this new slide show software and has now developed yet another masterpiece of the first day of school. I don't know how long her picture infatuation will last but I will be glad to share as long as she keeps making them.
 |
 |
| Make a Smilebox slideshow |
Have a great weekend.
I will be chasing purpose.
Thursday, August 20, 2009
NK Cells Deliver in First Patient
I woke up yesterday morning to find a mountain of email in my inbox. Ordinarily this would be a sign of a lot of work to do. But this was different. This mountain of email was congratulating a family that had a child that had just had a complete response in a brand new phase 1 clinical trial. While we see responses in phase 1 trials fairly often this one is particularly worth mentioning. First, we rarely see complete responses and, secondly, we rarely see this type of response in the very first patient on trial. (Actually the very first patient with neuroblasotma in the world to recieve Natural Killer cells.) Finally, this result is especially rare for children with relapsed high risk neuroblastoma. This was a family truly worthy of receiving congratulations. The true test will be to see if this response is replicated in other patients. However, if you are a parent of a patient that meets the eligibility criteria for this study it may very well be something that should be on your radar.
The recently opened trial is offered only at Sloan Kettering. The official title of the trial is "A Phase I Study of Anti-GD2 3F8 Antibody and Allogeneic Natural Killer Cells for High-Risk Neuroblastoma. As of this date there has only been one patient that has completed the study but, as I mentioned above, the results were impressive. In this trial patients with high-risk recurrent or persistent neuroblastoma are given chemotherapy (topotecan, cyclophosphamide, and vincristine), natural killer (NK) cells, and an antibody called 3F8. We already know that the high doses of chemotherapy are pretty effective in this population of children. We also know that 3F8 can also be effective for patients with marrow disease and, to a lesser extent, bony disease. There is a significant group that do not respond, however. 3f8 isn't believed to work for these patients because their immune systems lack sufficient (or capable) nature killer to fight it on their own, especially after chemotherapy. Less than 40% of children have this problem but it does give us an idea of why antibody does work in some patients but not others. By providing the patients with donor (allogenic) natural killer cells they are hoping to give the immune system enough of a boost that it will raise an attack against the neuroblastoma cells in these patients. In the first patient, it certainly looked like it did. It is tremendous news, especially for this patient.
I must admit I am somewhat surprised. I have actually seen quite a bit of preclinical research on NK cells and antibodies over the last two years. In animals, the combination seemed to improve response over either antibody or NK cells alone but the effect was not nearly as dramatic as what we saw in this first patient. From looking at the data one would assume a modest improvement but nothing like this. I expected it to be better than antibody alone. Just not this much.
So, this leads me to a quandary. I need to answer the question - why? I have a few theories which may lead to an answer and are probably worthwhile questions to ask your oncologist if you are considering this therapy. (I would be.) First, was this patient's response due to the preparatory regimen of high dose topotecan, cyclophosphamide, and vincristine? Quite possibly, however, I know nothing about the timing of this first patient's scans or previous response to these agents. Still, I would like to know more to try and ascertain the source of the success. Second, was the modest improvement that I saw in the preclinical research because they were looking at animals that did not have this immune system deficiency? I must admit, this is worth discussion but I think it is really more likely to produce speculation than answers.
In the end, the bottom line is this. If your child has refractory or relapsed disease, does not have heavy disease load (limited to bone and bone marrow), and may or may not have responded to antibody before, this is probably a worthwhile discussion to have with your oncologist.
Like I said, sometimes I am tremendously happy to find a mountain of email in my inbox.
Sometimes it is a sign of great purpose.
The recently opened trial is offered only at Sloan Kettering. The official title of the trial is "A Phase I Study of Anti-GD2 3F8 Antibody and Allogeneic Natural Killer Cells for High-Risk Neuroblastoma. As of this date there has only been one patient that has completed the study but, as I mentioned above, the results were impressive. In this trial patients with high-risk recurrent or persistent neuroblastoma are given chemotherapy (topotecan, cyclophosphamide, and vincristine), natural killer (NK) cells, and an antibody called 3F8. We already know that the high doses of chemotherapy are pretty effective in this population of children. We also know that 3F8 can also be effective for patients with marrow disease and, to a lesser extent, bony disease. There is a significant group that do not respond, however. 3f8 isn't believed to work for these patients because their immune systems lack sufficient (or capable) nature killer to fight it on their own, especially after chemotherapy. Less than 40% of children have this problem but it does give us an idea of why antibody does work in some patients but not others. By providing the patients with donor (allogenic) natural killer cells they are hoping to give the immune system enough of a boost that it will raise an attack against the neuroblastoma cells in these patients. In the first patient, it certainly looked like it did. It is tremendous news, especially for this patient.
I must admit I am somewhat surprised. I have actually seen quite a bit of preclinical research on NK cells and antibodies over the last two years. In animals, the combination seemed to improve response over either antibody or NK cells alone but the effect was not nearly as dramatic as what we saw in this first patient. From looking at the data one would assume a modest improvement but nothing like this. I expected it to be better than antibody alone. Just not this much.
So, this leads me to a quandary. I need to answer the question - why? I have a few theories which may lead to an answer and are probably worthwhile questions to ask your oncologist if you are considering this therapy. (I would be.) First, was this patient's response due to the preparatory regimen of high dose topotecan, cyclophosphamide, and vincristine? Quite possibly, however, I know nothing about the timing of this first patient's scans or previous response to these agents. Still, I would like to know more to try and ascertain the source of the success. Second, was the modest improvement that I saw in the preclinical research because they were looking at animals that did not have this immune system deficiency? I must admit, this is worth discussion but I think it is really more likely to produce speculation than answers.
In the end, the bottom line is this. If your child has refractory or relapsed disease, does not have heavy disease load (limited to bone and bone marrow), and may or may not have responded to antibody before, this is probably a worthwhile discussion to have with your oncologist.
Like I said, sometimes I am tremendously happy to find a mountain of email in my inbox.
Sometimes it is a sign of great purpose.
Wednesday, August 19, 2009
Lost Twerps of Atlantis
Good Morning! Lynley put together this slideshow of our trip to Atlantis. I think she did a great job and wanted to share. By the way, I am the tallest of the 4 twerps.
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| Make a Smilebox slideshow |
Sometimes purpose is so much fun!
Tuesday, August 18, 2009
First Day Success
Ah, the first day of school. You will be happy to know that it was a complete success. In fact, it was even a greater success than anticipated.
First, I am happy to report that Graham's fever stayed away and he was able to successfully attend and participate in his first day of school. By all reports he had a great day and made a nice transition into his new class. Yesterday was only a half day of school, however, so we will need to wait to see what happens today.
Sydney, too, had an excellent start. Although many of her best friends are not in her class this year, she seemed to make out just fine. The good news was that at recess (BTW, why do you need recess during a half day of school?) her entire gaggle of friends was reunited and I was happy to find Sydney, Jillian, Jillian (yes, two.) and Kaley were all having a wonderful time together on the playground. During the day Sydney received a tadpole (a mark of good behavior in this class, let's hope it isn't the last.) for being respectful. When asked of her opinion regarding the best part of the first day of school she said that Ms. Holder, her new teacher, was very sweet. All in all, for her, I don't think the first day of school could have been much better.
And Ainsley, sweet, demure and innocent Ainsley. Not buying it? Me neither. However, at this point she still seems to have everyone fooled. She had a good day. Even her teachers had nice things to say. When asked, Ainsley was especially proud of two things. First, she made a new friend - a boy. Does that surprise you? She also doesn't remember his name. That doesn't surprise me either. Secondly, she was extremely excited that she did not get in trouble on her first day of school and talked about it at length. She even got a green sticker. Who would have thought? This sounds more like the Ainsley I know. Knowing her she will have everyone wrapped around her little finger by the end of the week.
Another day of purpose down.
First, I am happy to report that Graham's fever stayed away and he was able to successfully attend and participate in his first day of school. By all reports he had a great day and made a nice transition into his new class. Yesterday was only a half day of school, however, so we will need to wait to see what happens today.Sydney, too, had an excellent start. Although many of her best friends are not in her class this year, she seemed to make out just fine. The good news was that at recess (BTW, why do you need recess during a half day of school?) her entire gaggle of friends was reunited and I was happy to find Sydney, Jillian, Jillian (yes, two.) and Kaley were all having a wonderful time together on the playground. During the day Sydney received a tadpole (a mark of good behavior in this class, let's hope it isn't the last.) for being respectful. When asked of her opinion regarding the best part of the first day of school she said that Ms. Holder, her new teacher, was very sweet. All in all, for her, I don't think the first day of school could have been much better.
And Ainsley, sweet, demure and innocent Ainsley. Not buying it? Me neither. However, at this point she still seems to have everyone fooled. She had a good day. Even her teachers had nice things to say. When asked, Ainsley was especially proud of two things. First, she made a new friend - a boy. Does that surprise you? She also doesn't remember his name. That doesn't surprise me either. Secondly, she was extremely excited that she did not get in trouble on her first day of school and talked about it at length. She even got a green sticker. Who would have thought? This sounds more like the Ainsley I know. Knowing her she will have everyone wrapped around her little finger by the end of the week.
Another day of purpose down.
Monday, August 17, 2009
First Day of School
Summer is officially over. Today, all of the Dunganlets head back to school. And, for a change, they will all be going to the same school. One drop off and one pick up, yes, this will be twerp transport mecca.
Sydney will be heading to second grade with Ms. Holder. We spent about 45 minutes with her the other night and think she will be a perfect fit. You may remember that last year I compared her teacher, Mrs. Rogers, to a Disney princess (that was a smack on description by the way). Well, this year, in keeping with the Disney theme I would have to describe this teacher as a fairy god mother. I honestly don't think there could be a better match. Ms. Holder is unique. She, too, is the parent of a child that was a cancer survivor and, even more eerily coincidental, with high pitch hearing loss. In fact, her children are both grown and are now speech pathologists. She understands Sydney's unique challenges and I think will be instrumental in aiding us to help Sydney do the best she possibly can.
Graham has been placed in Mrs. Lewis' class. You may remember this name from 2 years ago when Sydney had her for a teacher. I think she will be a great fit for Graham. The trick for Graham will be in getting him to the first day of school. You see, yesterday morning he had a surprise trip to the ER. It actually sound much worse than it was. Starting on Friday, Graham had a fever and began complaining of flu like symptoms. While we could have waited until Monday to see the doctor we knew he would surely have to miss school. Additionally, for obvious reasons, if this truly was the flu we wanted to catch it early. So, to make a long story short, we made an early morning trip to the ER to have him checked out. It was a good thing too, at the time he had a 103 degree fever. In the end, he tested negative for both flu and strep. He has a simple virus. He needed some love, some cuddles, and some chicken noodle soup. I am glad to report that he improved yesterday. However, today is anew day and we will need to wait to see how he feels this morning. Assuming the fever is still gone, he should be ready for reintegration into the land of the living and, hopefully, capable of participating in the first day of school.
Believe it or not, Ainsley is the one that I have the most concern about today. Over the last few weeks, Ainsley has gone from being absolutely fearless to sheepishly petrified. I don't think the metamorphosis is permanent. In fact, I think it is just a stage that she is going through. We began seeing this trait rear its head on vacation when she refused to touch the sea lion on one of our adventures. We saw more of it the other afternoon when we tried to introduce her to a few of the kids in her classroom on meet the teacher day. For some reason, she is being shy. It is a new twist to Ainsley and, frankly, it has caught both Lynley and I off guard. This is one side of her we have never seen (and never thought we would) and are not quite sure what to do with. I have a feeling that today will be a rough start for her.
Well, I had best be off, today's schedule is tight. In true SCS tradition they are starting school with a half day which means parents only get a half day of work before the kiddos need to be picked up. It will be a shortened day of work.
It will not be lacking purpose, however.
Sydney will be heading to second grade with Ms. Holder. We spent about 45 minutes with her the other night and think she will be a perfect fit. You may remember that last year I compared her teacher, Mrs. Rogers, to a Disney princess (that was a smack on description by the way). Well, this year, in keeping with the Disney theme I would have to describe this teacher as a fairy god mother. I honestly don't think there could be a better match. Ms. Holder is unique. She, too, is the parent of a child that was a cancer survivor and, even more eerily coincidental, with high pitch hearing loss. In fact, her children are both grown and are now speech pathologists. She understands Sydney's unique challenges and I think will be instrumental in aiding us to help Sydney do the best she possibly can.
Graham has been placed in Mrs. Lewis' class. You may remember this name from 2 years ago when Sydney had her for a teacher. I think she will be a great fit for Graham. The trick for Graham will be in getting him to the first day of school. You see, yesterday morning he had a surprise trip to the ER. It actually sound much worse than it was. Starting on Friday, Graham had a fever and began complaining of flu like symptoms. While we could have waited until Monday to see the doctor we knew he would surely have to miss school. Additionally, for obvious reasons, if this truly was the flu we wanted to catch it early. So, to make a long story short, we made an early morning trip to the ER to have him checked out. It was a good thing too, at the time he had a 103 degree fever. In the end, he tested negative for both flu and strep. He has a simple virus. He needed some love, some cuddles, and some chicken noodle soup. I am glad to report that he improved yesterday. However, today is anew day and we will need to wait to see how he feels this morning. Assuming the fever is still gone, he should be ready for reintegration into the land of the living and, hopefully, capable of participating in the first day of school.
Believe it or not, Ainsley is the one that I have the most concern about today. Over the last few weeks, Ainsley has gone from being absolutely fearless to sheepishly petrified. I don't think the metamorphosis is permanent. In fact, I think it is just a stage that she is going through. We began seeing this trait rear its head on vacation when she refused to touch the sea lion on one of our adventures. We saw more of it the other afternoon when we tried to introduce her to a few of the kids in her classroom on meet the teacher day. For some reason, she is being shy. It is a new twist to Ainsley and, frankly, it has caught both Lynley and I off guard. This is one side of her we have never seen (and never thought we would) and are not quite sure what to do with. I have a feeling that today will be a rough start for her.
Well, I had best be off, today's schedule is tight. In true SCS tradition they are starting school with a half day which means parents only get a half day of work before the kiddos need to be picked up. It will be a shortened day of work.
It will not be lacking purpose, however.
Friday, August 14, 2009
I am not a tight wad!
Good morning! Well, as promised, I need to update you on the Dungan clan's trip to Atlantis (a.k.a. the 'make you' poor house) First off, I would be remiss if I did not tell you that we had an extraordinary time. We are very thankful to my mother who gave us this trip as a Christmas present. Originally, after watching videos and reviewing the websites of both Disney World and Atlantis we gave the kiddos the choice of where they would like to go. Hands down, they chose Atlantis. For them, a water park was the ultimate destination and Atlantis fit the bill. Overall, the kiddos were pretty good. They had their moments of goodness:
and badness:
But, overall, it was pretty spectacular. For those of you who do not know about Atlantis, it is a resort on Paradise Island in the Bahamas. It really caters to all ages but there is no doubt that it has a tinge towards kiddos. The resort itself includes a casino, fine dining, golf, and spa services among many other adult amenities, however, the fact remains that the Atlantis suite of hotels are situated around an industrial sized water park and marine habitat chock full of some of the world's largest aquariums. From a kiddo standpoint, it really could not have been any better.
However, before you pack your bags and load up the kiddos in the family roadster and ship off for the Bahamas, I feel I would be really remiss if I did not give other parents an accurate low down. I have already established the fun and the activities. From that standpoint it could not have been any better - genuinely. However, I did feel it missed on a couple of substantial points. First, everything is ridiculously expensive. They have you captive on the island and they know it. We had a meal plan which was nice. It was fairly reasonably priced and gave us a pretty good variety of choices. However, without the meal plan you might as well bring a suitcase full of money. While meals were covered for us, I did get the opportunity to review the final bill form each of our meals in real dollars. Even at your typical breakfast buffet (you know - scrambled eggs, omelet station, bacon, sausage, fruit and pastry bar) the cost for the five of us was about $150.00 - and that was the cheap option. We could have opted for more ritzy dining. That was bad enough but when we stepped outside and I realized that they were charging $9.00 for a 24 ounce bottle of water I started to become appalled. Ironically, the same bottle of water from our hotel mini bar was only $7.00. Cokes were $4.00 and wine and beer started at $7.50 a drink and went up from there. Now don't get me wrong, I am not a tight wad. But, at some point, the ridiculousness of the overpricing eventually began to take some of the enjoyment of the trip away if for no other reason than the principal of it. Furthermore, I honestly have no problem with overpricing goods and services as long as they are worth it. However, at the prices they were charging I expected a couple of levels of service above what we received. This is not to say that we had bad service - just, at that price point, you would expect it to be extraordinary. I don't know if it was the culture of the people or what but I always felt like it was a struggle to get a waiter or waitresses attention. Again, I don't say this to whine, only to say that it could and should have been much more for what was paid. From that perspective the price for the entire trip (less the ridiculous cost of our incidental beverages which was $770.00 for 4 days of waters, cokes, etc.) was similar to our Disney cruise and I can tell you that the level of service during our Disney experience far surpassed that of Atlantis - not by feet, by miles.
With all of that being said, I still can not say that I would not recommend Atlantis. In fact, I would recommend it this way. Take the Disney Cruise. Honestly, nothing is better. During your stop in Nassau spend the day at Atlantis. Do the Dolphin adventure and spend the day enjoying all of their incredible water features and parks. Visit the pools and water slides or make your way out to the beach for relaxing or parasailing. There are activities for everyone. However, don't forget to take a suitcase full of bottled water from the cruise ship. I honestly think this combination is a home run. I would prefer two days at Atlantis to be able to do and see everything but this method will also leave you wanting more which may just be the perfect feeling to leave with - as opposed to feeling like you were somehow robbed.
Overall, I rank this trip up there as one of my favorites but I just could not help from feeling a bit poorer than I wanted to.
The point thoug, I guess, is that all of us came back rejuvenated and full of purpose.
and badness:
But, overall, it was pretty spectacular. For those of you who do not know about Atlantis, it is a resort on Paradise Island in the Bahamas. It really caters to all ages but there is no doubt that it has a tinge towards kiddos. The resort itself includes a casino, fine dining, golf, and spa services among many other adult amenities, however, the fact remains that the Atlantis suite of hotels are situated around an industrial sized water park and marine habitat chock full of some of the world's largest aquariums. From a kiddo standpoint, it really could not have been any better.However, before you pack your bags and load up the kiddos in the family roadster and ship off for the Bahamas, I feel I would be really remiss if I did not give other parents an accurate low down. I have already established the fun and the activities. From that standpoint it could not have been any better - genuinely. However, I did feel it missed on a couple of substantial points. First, everything is ridiculously expensive. They have you captive on the island and they know it. We had a meal plan which was nice. It was fairly reasonably priced and gave us a pretty good variety of choices. However, without the meal plan you might as well bring a suitcase full of money. While meals were covered for us, I did get the opportunity to review the final bill form each of our meals in real dollars. Even at your typical breakfast buffet (you know - scrambled eggs, omelet station, bacon, sausage, fruit and pastry bar) the cost for the five of us was about $150.00 - and that was the cheap option. We could have opted for more ritzy dining. That was bad enough but when we stepped outside and I realized that they were charging $9.00 for a 24 ounce bottle of water I started to become appalled. Ironically, the same bottle of water from our hotel mini bar was only $7.00. Cokes were $4.00 and wine and beer started at $7.50 a drink and went up from there. Now don't get me wrong, I am not a tight wad. But, at some point, the ridiculousness of the overpricing eventually began to take some of the enjoyment of the trip away if for no other reason than the principal of it. Furthermore, I honestly have no problem with overpricing goods and services as long as they are worth it. However, at the prices they were charging I expected a couple of levels of service above what we received. This is not to say that we had bad service - just, at that price point, you would expect it to be extraordinary. I don't know if it was the culture of the people or what but I always felt like it was a struggle to get a waiter or waitresses attention. Again, I don't say this to whine, only to say that it could and should have been much more for what was paid. From that perspective the price for the entire trip (less the ridiculous cost of our incidental beverages which was $770.00 for 4 days of waters, cokes, etc.) was similar to our Disney cruise and I can tell you that the level of service during our Disney experience far surpassed that of Atlantis - not by feet, by miles.
With all of that being said, I still can not say that I would not recommend Atlantis. In fact, I would recommend it this way. Take the Disney Cruise. Honestly, nothing is better. During your stop in Nassau spend the day at Atlantis. Do the Dolphin adventure and spend the day enjoying all of their incredible water features and parks. Visit the pools and water slides or make your way out to the beach for relaxing or parasailing. There are activities for everyone. However, don't forget to take a suitcase full of bottled water from the cruise ship. I honestly think this combination is a home run. I would prefer two days at Atlantis to be able to do and see everything but this method will also leave you wanting more which may just be the perfect feeling to leave with - as opposed to feeling like you were somehow robbed.
Overall, I rank this trip up there as one of my favorites but I just could not help from feeling a bit poorer than I wanted to.
The point thoug, I guess, is that all of us came back rejuvenated and full of purpose.
Thursday, August 13, 2009
A New Start
Good morning! At midnight last night we arrived home from our vacation to Atlantis. We had an incredible time. In fact, I am sure there will be days and days of stories to tell. For now, I am in full recovery mode. In fact, I am not even quite awake yet. However, I wanted everyone to know that we are at home safe, sound, and happy.
I also want everyone to know how thankful we are for everyone's support concerning Lunch for Life. It will take some time to personally respond to the 280 or so new messages that we received while we were out of the country. However, I do want you to know how incredibly thankful we are to have so many well wishers and friends. When you are wronged you often feel alone in your fight but with the tremendous support we have received we can not possibly feel that way. Thank you for your kind words and offers of help. It really meant a lot.
The only new news on that front is that CNCF demanded that we take the Lunch for Life site down. So, we did.
Not to worry, though. Plan B is well on its way - thanks to all of you that have helped us there as well.
We will beat this disease.
Purpose is rejuvenated.
I also want everyone to know how thankful we are for everyone's support concerning Lunch for Life. It will take some time to personally respond to the 280 or so new messages that we received while we were out of the country. However, I do want you to know how incredibly thankful we are to have so many well wishers and friends. When you are wronged you often feel alone in your fight but with the tremendous support we have received we can not possibly feel that way. Thank you for your kind words and offers of help. It really meant a lot.
The only new news on that front is that CNCF demanded that we take the Lunch for Life site down. So, we did.
Not to worry, though. Plan B is well on its way - thanks to all of you that have helped us there as well.
We will beat this disease.
Purpose is rejuvenated.
Friday, August 7, 2009
The End of Lunch for Life?
Lunch for Life... It was almost six years ago to the day that I most literally dreamt up the idea of Lunch for Life. I can remember it as vividly as if it were yesterday. Sydney was just 3 months into her diagnosis. We were just beginning to grip our new lives. Sydney was responding. I was just beginning to learn how much more needed to be done for research and how little funding was actually available. I was entirely frustrated. So much so, I dreamt about it. It was in one of those "dreams of frustration" that I envisioned Lunch for Life.
Almost at once, the idea began to take shape. While I wanted to ensure every last dollar was spent for research I really had no desire to set up my own foundation. I didn't want something in Sydney's name. I wanted something that was about all children with neuroblastoma, about all of our families.
After much research, I selected the CNCF as a beneficiary of our donated research funds. At that time they were the only neuroblastoma specific foundation I knew of and they also were one of the few that had a medical advisory board - which I thought was important to educate research decisions. The agreement was simple and had three parts. 1) If funds raised by Lunch for Life were going to benefit the CNCF they had to use all of the money to support neuroblastoma research, 2) they had to give me a voice in which research was funded and 3) they had to supply a method for secure online donations.
Ironically, at that time, I would not even disclose what the fundraiser was. They had no idea what I was going to do until the night before I began Lunch for Life. I was secretive and perhaps a bit paranoid. I did not want anyone to steal the idea. I knew it was a good one. But I also wanted to be absolutely sure the money Lunch for Life raised went to help our kids. Period.
From there it was history. During those first 10 days we would raise just over $125,000.00 and it only got better from there. The rest is in the research record books as we say. Lunch for Life would grow into what it is today with over 400 member families.
About a year later, I would officially become involved with CNCF. I would sit on the board (until I resigned that post a few months ago.) Years later I would even work for the foundation spending a portion of my time working on research initiatives, helping families, and fundraising. I was, and continue to be, passionate about helping children with neuroblastoma by working tirelessly to help find a cure.
When the foundation began to move away from what, in my opinion, was out of alignment with my passion -- helping find a cure -- I decided it was time for me to leave. And, because my purpose is what inspired me to create Lunch for Life in the first place, it seemed natural for me to move the funds generated by this program into something more in keeping with my philosophies. Therefore, I told CNCF, upon my departure, that Lunch for Life would be changing its beneficiary. At that point, it seemed a logical course of events.
Not so fast.
You see, at some point during Lunch for Life's lifetime, the CNCF trademarked the name. The issue was that there were some problems with others beginning to use the name. Believe it or not, American Express was after it at one point. Therefore, trademarking the name seemed to be a logical step. I had no idea how to do it and the CNCF offered to help protect the name so others could not use it. Perhaps I was naive, but I did not have the resources, attorneys, or know-how to do it. So, when they offered to help me protect the name, I accepted their help - for the name, that was all. I did not agree to transfer the Lunch for Life fundraiser to them. I never agreed to give anything else to them. I still wanted to be sure my passion for helping neuroblastoma kids would never be in jeopardy. We were simply protecting the name.
Nevertheless, that step turns out to have caused a lot of problems and, depending on what CNCF choses to do at this point could threaten to derail the mission of helping find a cure.
When I decided to leave the CNCF and I told them I was taking Lunch for Life, they looked at their bottom line and said "no"! They told me, that I could not use the Lunch for Life name as they now owned it. I was told I could only use the name if I continued to fundraise for the CNCF. Beleive it or not, to add injury to insult, they even offered to sell my name back to me for $750,000.00. You should probably know that no one ever took a single dime from the CNCF for working on the Lunch for Life website or the materials. In fact, for much of it, personal friends gave their expertise and their time to help Lunch for Life. It was always completely managed and maintained outside the auspices of the CNCF.
I understand the legal issue. CNCF trademarked the name and decided to play hard ball. However, the Lunch for Life donors are not concerned with legalities. They, like me, are interested in helping find a cure for our kids. To me it becomes less of a legal issue and more of an ethical one. I never thought CNCF would try to pull this. It just hits me as so morally corrupt that it makes my skin crawl.
So, for the last few months, I have been doing everything I can to reason with CNCF. I have been patiently trying to resolve these issues so that every penny of your generous donations will continue to go where they are needed -- to fund research. This is one of the very reasons that I have remained silent for so long - hoping we would find a solution and praying that we would both be able to quietly go on our own separate ways. In my mind, it is what is best for the kids. They have no capacity to continue Lunch for Life and I have no desire to participate in their organization.
Unfortunately, at this point, I don't see any kind of smooth resolution.
I told them that they would continue to benefit from Lunch for Life through August 21st, 2009. At which point I will be taking down the site and going in a different direction.
So, to make a long story short, this was handed over to the attorneys. I don't know what will happen.
I will tell you this though. If you donated to Lunch for Life, the funds must to be used for neuroblastoma research. Period. It will go to that purpose and you can be guaranteed that I will fight until my last breath to ensure that is the case. Secondly, if CNCF does not transfer the Lunch for Life name to me, it will end on the 21st. The CNCF may try to use the name but you should also know that it has nothing to do with me or any of the families that started it and it is being operated contrary to the mission that we believed when it was launched.
The good news?
Well, if you know me and have learned anything about my history, you know that I have a plan B through Z in place and ready to go. You can rest assured that there is something even bigger and better waiting in the wings. You should also know that we will honor all of the families' giving trees and ensure that every dollar we raise makes it into the hands of the researchers with the very best of ideas. We will fund the cure for neuroblastoma whether or not we own the name "Lunch for Life."
It is about our kids.
What will happen?
It is in the CNCF's hands. Time will tell but, at the very least, it ought to be fun to watch.
God, does that feel good to get off my chest. I can finally breathe again. How completely and utterly liberating.
Now, feel free to write, comment, yell, whatever you like. Have your voice heard. I will do my best to watch. The Dungan Five are on their way to Atlantis for a five day vacation. Phones will be nonexistent and email will be sporadic and sketchy at best. However, I can't wait to get back, full of energy and ready to fight for what is right for our children.
Purpose dignified!
DISCLAIMER: The content of this diary is the property of Mark Dungan. All words, phrases, and opinions are the sole property of Mark Dungan. I am not trademarkeable!
Almost at once, the idea began to take shape. While I wanted to ensure every last dollar was spent for research I really had no desire to set up my own foundation. I didn't want something in Sydney's name. I wanted something that was about all children with neuroblastoma, about all of our families.
After much research, I selected the CNCF as a beneficiary of our donated research funds. At that time they were the only neuroblastoma specific foundation I knew of and they also were one of the few that had a medical advisory board - which I thought was important to educate research decisions. The agreement was simple and had three parts. 1) If funds raised by Lunch for Life were going to benefit the CNCF they had to use all of the money to support neuroblastoma research, 2) they had to give me a voice in which research was funded and 3) they had to supply a method for secure online donations.
Ironically, at that time, I would not even disclose what the fundraiser was. They had no idea what I was going to do until the night before I began Lunch for Life. I was secretive and perhaps a bit paranoid. I did not want anyone to steal the idea. I knew it was a good one. But I also wanted to be absolutely sure the money Lunch for Life raised went to help our kids. Period.
From there it was history. During those first 10 days we would raise just over $125,000.00 and it only got better from there. The rest is in the research record books as we say. Lunch for Life would grow into what it is today with over 400 member families.
About a year later, I would officially become involved with CNCF. I would sit on the board (until I resigned that post a few months ago.) Years later I would even work for the foundation spending a portion of my time working on research initiatives, helping families, and fundraising. I was, and continue to be, passionate about helping children with neuroblastoma by working tirelessly to help find a cure.
When the foundation began to move away from what, in my opinion, was out of alignment with my passion -- helping find a cure -- I decided it was time for me to leave. And, because my purpose is what inspired me to create Lunch for Life in the first place, it seemed natural for me to move the funds generated by this program into something more in keeping with my philosophies. Therefore, I told CNCF, upon my departure, that Lunch for Life would be changing its beneficiary. At that point, it seemed a logical course of events.
Not so fast.
You see, at some point during Lunch for Life's lifetime, the CNCF trademarked the name. The issue was that there were some problems with others beginning to use the name. Believe it or not, American Express was after it at one point. Therefore, trademarking the name seemed to be a logical step. I had no idea how to do it and the CNCF offered to help protect the name so others could not use it. Perhaps I was naive, but I did not have the resources, attorneys, or know-how to do it. So, when they offered to help me protect the name, I accepted their help - for the name, that was all. I did not agree to transfer the Lunch for Life fundraiser to them. I never agreed to give anything else to them. I still wanted to be sure my passion for helping neuroblastoma kids would never be in jeopardy. We were simply protecting the name.
Nevertheless, that step turns out to have caused a lot of problems and, depending on what CNCF choses to do at this point could threaten to derail the mission of helping find a cure.
When I decided to leave the CNCF and I told them I was taking Lunch for Life, they looked at their bottom line and said "no"! They told me, that I could not use the Lunch for Life name as they now owned it. I was told I could only use the name if I continued to fundraise for the CNCF. Beleive it or not, to add injury to insult, they even offered to sell my name back to me for $750,000.00. You should probably know that no one ever took a single dime from the CNCF for working on the Lunch for Life website or the materials. In fact, for much of it, personal friends gave their expertise and their time to help Lunch for Life. It was always completely managed and maintained outside the auspices of the CNCF.
I understand the legal issue. CNCF trademarked the name and decided to play hard ball. However, the Lunch for Life donors are not concerned with legalities. They, like me, are interested in helping find a cure for our kids. To me it becomes less of a legal issue and more of an ethical one. I never thought CNCF would try to pull this. It just hits me as so morally corrupt that it makes my skin crawl.
So, for the last few months, I have been doing everything I can to reason with CNCF. I have been patiently trying to resolve these issues so that every penny of your generous donations will continue to go where they are needed -- to fund research. This is one of the very reasons that I have remained silent for so long - hoping we would find a solution and praying that we would both be able to quietly go on our own separate ways. In my mind, it is what is best for the kids. They have no capacity to continue Lunch for Life and I have no desire to participate in their organization.
Unfortunately, at this point, I don't see any kind of smooth resolution.
I told them that they would continue to benefit from Lunch for Life through August 21st, 2009. At which point I will be taking down the site and going in a different direction.
So, to make a long story short, this was handed over to the attorneys. I don't know what will happen.
I will tell you this though. If you donated to Lunch for Life, the funds must to be used for neuroblastoma research. Period. It will go to that purpose and you can be guaranteed that I will fight until my last breath to ensure that is the case. Secondly, if CNCF does not transfer the Lunch for Life name to me, it will end on the 21st. The CNCF may try to use the name but you should also know that it has nothing to do with me or any of the families that started it and it is being operated contrary to the mission that we believed when it was launched.
The good news?
Well, if you know me and have learned anything about my history, you know that I have a plan B through Z in place and ready to go. You can rest assured that there is something even bigger and better waiting in the wings. You should also know that we will honor all of the families' giving trees and ensure that every dollar we raise makes it into the hands of the researchers with the very best of ideas. We will fund the cure for neuroblastoma whether or not we own the name "Lunch for Life."
It is about our kids.
What will happen?
It is in the CNCF's hands. Time will tell but, at the very least, it ought to be fun to watch.
God, does that feel good to get off my chest. I can finally breathe again. How completely and utterly liberating.
Now, feel free to write, comment, yell, whatever you like. Have your voice heard. I will do my best to watch. The Dungan Five are on their way to Atlantis for a five day vacation. Phones will be nonexistent and email will be sporadic and sketchy at best. However, I can't wait to get back, full of energy and ready to fight for what is right for our children.
Purpose dignified!
DISCLAIMER: The content of this diary is the property of Mark Dungan. All words, phrases, and opinions are the sole property of Mark Dungan. I am not trademarkeable!
Thursday, August 6, 2009
A Neuroblastoma Adjustment
It may come as a significant surprise to many to learn that I have left the CNCF. I have resigned from the board and I am no longer affiliated with them in any way. (Are you in shock yet?) I did so a few months ago, but chose not to say anything in my diary until we were farther along in discussions. I’m still not sure how those discussions will end, but we are at a point where staying silent is no longer the right path. So, why the break you may ask? I no longer felt that the direction the CNCF was heading was in our children’s best interest, nor the best interest of meaningful and purposeful research. After years of trying to create substantial change it became evident that I would never be able to accomplish it there. In the end, our priorities were very different and I will no longer be supporting the foundation.
So, I left.
Keeping my mouth shut has not been an easy task. Then again, I know that you know that about me. It has taken a noble, herculean effort as I have wanted nothing more than to shout from the rooftops. However, I also had to ensure that the children and families did not lose as a result of my departure. It is for this reason that I remained silent for as long as it seemed prudent.
I am a pretty simple and straight forward guy. Nothing much has changed since my entry into the world of neuroblastoma. I detest the disease and I want it wiped off of the face of the earth. I don’t want another family to have to face this monster and I certainly don’t want another baby girl or boy to have to walk in Sydney’s footsteps. No one, not even our greatest enemies, should have to endure it. It is this fear and the appreciation of this reality that drives me. It is not a choice. It must change.
To make a difference is not that hard. It is just two simple steps.
First, as everyone knows, is research. I want to fund the research that is meaningful - research that will make a significant difference in the lives of children with neuroblastoma. While I understand how crucially important it is to fund research that increases the overall knowledge of neuroblastoma, I believe it is even more important to fund research that has a clear path to impacting lives. I want to fund research that will save children. Period. In this same line of thinking, I have always wanted to fund research in a way that ensured that every single penny was making a difference. I have always wanted to create a way for friends and families to donate which would ensure that 100% of the funds donated would be utilized for research - not for administrative expenses, not for marketing, not for other programs or initiatives and not for anything else.
Secondly, after six years of living in this world, I know the importance of the simple act of helping other families understand their child's treatment options and issues. Neuroblastoma is a tricky subject for even the most knowledgeable of oncologists, much less a family of a child with neuroblastoma and no medical training. I think it is incredibly important for parents to have a place that they can go to get accurate, unbiased information and a thorough understanding of all of the important issues – many of which that aren’t even fully understood by many of the experts - a place where they can not only talk to other families that have walked down a similar path but can also find the world's leading medical expert for any neuroblastoma related issue imaginable. I want a place where families can get the truly unbiased and meaningful answers. You would be surprised at the number of institutions across North America in major cities in which children with neuroblastoma are still being treated contrary to what the world's experts believe. Many, in America, are still being treated in the dark ages. Knowledge is a simple way to make a difference and a truly inexpensive way to save lives.
See, these needs are simple and yet incredibly powerful. Unfortunately, to this date, they are also two needs that are yet to be truly and honestly fulfilled. It is for this reason that I, along with a few other families and business leaders have started a foundation with these specific goals in mind. We have started The Neuroblastoma Foundation - a place where you these two goals reign supreme. First, you can go there to fund research. If it is important to you to ensure that every dollar you donate goes to fund meaningful neuroblastoma research, then you can rest assured that 100% of your funds will make it into the hands of those researchers that need it most. Secondly, if you have a question about neuroblastoma it is a place for you to go to get answers. We are in the process of building a library of neuroblastoma related information. Additionally, we will offer monthly seminars, educational videos and weekly articles regarding everything you ever wanted to know about neuroblastoma. The website is still a work in progress but you are more than welcome to visit. More information is being added every day. The website is http://www.neuroblastomafoundation.org. Let me know what you think.
You see, it is not that complicated to create change.
Now, I can make a difference.
This is purpose.
Lunch for Life? Good question. That is a discussion left all unto itself. For that, we will have to wait until tomorrow.
So, I left.
Keeping my mouth shut has not been an easy task. Then again, I know that you know that about me. It has taken a noble, herculean effort as I have wanted nothing more than to shout from the rooftops. However, I also had to ensure that the children and families did not lose as a result of my departure. It is for this reason that I remained silent for as long as it seemed prudent.
I am a pretty simple and straight forward guy. Nothing much has changed since my entry into the world of neuroblastoma. I detest the disease and I want it wiped off of the face of the earth. I don’t want another family to have to face this monster and I certainly don’t want another baby girl or boy to have to walk in Sydney’s footsteps. No one, not even our greatest enemies, should have to endure it. It is this fear and the appreciation of this reality that drives me. It is not a choice. It must change.
To make a difference is not that hard. It is just two simple steps.
First, as everyone knows, is research. I want to fund the research that is meaningful - research that will make a significant difference in the lives of children with neuroblastoma. While I understand how crucially important it is to fund research that increases the overall knowledge of neuroblastoma, I believe it is even more important to fund research that has a clear path to impacting lives. I want to fund research that will save children. Period. In this same line of thinking, I have always wanted to fund research in a way that ensured that every single penny was making a difference. I have always wanted to create a way for friends and families to donate which would ensure that 100% of the funds donated would be utilized for research - not for administrative expenses, not for marketing, not for other programs or initiatives and not for anything else.
Secondly, after six years of living in this world, I know the importance of the simple act of helping other families understand their child's treatment options and issues. Neuroblastoma is a tricky subject for even the most knowledgeable of oncologists, much less a family of a child with neuroblastoma and no medical training. I think it is incredibly important for parents to have a place that they can go to get accurate, unbiased information and a thorough understanding of all of the important issues – many of which that aren’t even fully understood by many of the experts - a place where they can not only talk to other families that have walked down a similar path but can also find the world's leading medical expert for any neuroblastoma related issue imaginable. I want a place where families can get the truly unbiased and meaningful answers. You would be surprised at the number of institutions across North America in major cities in which children with neuroblastoma are still being treated contrary to what the world's experts believe. Many, in America, are still being treated in the dark ages. Knowledge is a simple way to make a difference and a truly inexpensive way to save lives.
See, these needs are simple and yet incredibly powerful. Unfortunately, to this date, they are also two needs that are yet to be truly and honestly fulfilled. It is for this reason that I, along with a few other families and business leaders have started a foundation with these specific goals in mind. We have started The Neuroblastoma Foundation - a place where you these two goals reign supreme. First, you can go there to fund research. If it is important to you to ensure that every dollar you donate goes to fund meaningful neuroblastoma research, then you can rest assured that 100% of your funds will make it into the hands of those researchers that need it most. Secondly, if you have a question about neuroblastoma it is a place for you to go to get answers. We are in the process of building a library of neuroblastoma related information. Additionally, we will offer monthly seminars, educational videos and weekly articles regarding everything you ever wanted to know about neuroblastoma. The website is still a work in progress but you are more than welcome to visit. More information is being added every day. The website is http://www.neuroblastomafoundation.org. Let me know what you think.
You see, it is not that complicated to create change.
Now, I can make a difference.
This is purpose.
Lunch for Life? Good question. That is a discussion left all unto itself. For that, we will have to wait until tomorrow.
Wednesday, August 5, 2009
Moving at the speed of good behavior
Good morning! Yesterday was so fast paced that neither the kiddos (nor myself) had the time to misbehave. Sydney, Graham and Ainsley are all spending the majority of their time outside of the house with Miss Claudia. It is her last week with us and she is trying to go out with a bang (or, in this case, without giving the kids much of a chance to be up to their normal tricks) It is amazing how quickly her time with us went. It is hard to believe that summer is nearly over. Next week we will be going on a Dungan family vacation and, almost as soon as we get back, the rugrats will be back at school. Yep, the end of summer is on our heels.
Yesterday the kiddos were treated to a morning of Chuck E. Cheese. From eye witness reports, I understand that they had a blast. Additionally, they were so busy running around they had no time to get into trouble with each other. THat was followed by lunch and a nap and the next thing we knew we were eating dinner and heading out to another event. In the evening we had one of our first back to school parties. The SCS Kindergarten and Pre-K classes threw a shindig at Jumping Party. As you might expect there were about 100 four and five year old miniature goobers running around in all out chaos. Graham and Sydney had great fun seeing many of their friends from the year before. This was Ainsley's inaugural bash and there wasn't anyone in her age group that she really knew. None the less, she had great fun following her brother and sister around. That was, until, she foundcaught the eye of an older man. Unfortunately, the love of Ainsley's life, Zackary Rodgers, was not there. The good news was that his older brother Jeremy was. This was almost as good as the real thing. Ainsley decided to spend the remainder of her time chasing and hollering after him. Nothing was funnier that watching her call after him "Germy, Germy!!" I was laughing so hard I didn't have the heart to correct her. None the less, they all had great fun. By the time we arrived home, everyone was ready for a quick bath and bed. It was a complete and well-behaved day for them. That is the trick. Keep them too busy for badness.
Today will be more of the same for them. I will be off to the Tarrant County Appraisal District to fight against yet another 10% increase in property values and it's corresponding increase in taxes. I am amazed. Every year since the day we moved in (10 years ago) they have raised our property value by 10%.
Who knew the housing market was so good?
It isn't, lets hope I can prove my point.
Well, there you have it. I am off to a day of mixed purpose.
Yesterday the kiddos were treated to a morning of Chuck E. Cheese. From eye witness reports, I understand that they had a blast. Additionally, they were so busy running around they had no time to get into trouble with each other. THat was followed by lunch and a nap and the next thing we knew we were eating dinner and heading out to another event. In the evening we had one of our first back to school parties. The SCS Kindergarten and Pre-K classes threw a shindig at Jumping Party. As you might expect there were about 100 four and five year old miniature goobers running around in all out chaos. Graham and Sydney had great fun seeing many of their friends from the year before. This was Ainsley's inaugural bash and there wasn't anyone in her age group that she really knew. None the less, she had great fun following her brother and sister around. That was, until, she foundcaught the eye of an older man. Unfortunately, the love of Ainsley's life, Zackary Rodgers, was not there. The good news was that his older brother Jeremy was. This was almost as good as the real thing. Ainsley decided to spend the remainder of her time chasing and hollering after him. Nothing was funnier that watching her call after him "Germy, Germy!!" I was laughing so hard I didn't have the heart to correct her. None the less, they all had great fun. By the time we arrived home, everyone was ready for a quick bath and bed. It was a complete and well-behaved day for them. That is the trick. Keep them too busy for badness.
Today will be more of the same for them. I will be off to the Tarrant County Appraisal District to fight against yet another 10% increase in property values and it's corresponding increase in taxes. I am amazed. Every year since the day we moved in (10 years ago) they have raised our property value by 10%.
Who knew the housing market was so good?
It isn't, lets hope I can prove my point.
Well, there you have it. I am off to a day of mixed purpose.
Tuesday, August 4, 2009
Antibody is in limited supply
Good morning! Thanks for all of the email. I think we all shared in a good laugh regarding yesterday's entry. Today, however, I have to focus on an important topic. For months, everyone has been forced to listen to me harp on the antibody topic. I have made all kinds of insinuations that it was important to get onto a clinical trial that made your child eligible for antibody therapy. I warned of an impending antibody supply issue. I am sure, for some, you thought I was bordering on the edge of paranoia. I wasn't, the math simply did not work.
None the less, I saw the first public statements regarding the supply problem in an article from Nature Reviews (Drug Discovery) this weekend. It is a serious issue. Here is an excerpt:
Go find out where you stand.
This is important purpose.
None the less, I saw the first public statements regarding the supply problem in an article from Nature Reviews (Drug Discovery) this weekend. It is a serious issue. Here is an excerpt:
Overall, "these findings present a clear paradigm shift and establish immunotherapy as a cornerstone of high-risk neuroblastoma treatment. This immunotherapy regimen will now be standard of care for children in first remission," says John J. Maris, Director of the Cancer Center at The Children's Hospital of Philadelphia. "The biggest challenge for the paediatric oncology community is that the antibody is in limited supply and no commercial partner has been identified."So, what does this mean for your child? What do you do? For starters, talk to your oncologist. Ensure that you are doing everything you can to maximize your opportunity to receive the antibody. If there was an absolute answer, I would tell you. If there was something you could do that would absolutely guaranty your child's eligibility, I would gladly share. Unfortunately, I don't think anyone really knows the answer. This is because all of the rules have not been set in stone. Ultimately I can tell you that they will beginning prioritizing by restricting the eligibility requirements for the antibody study. They have traditionally done this by limiting the number of trials that you would have to participate on to be eligible. In other words, if you were on trial A or B you would be eligible. However, if you were on trial C or not on trial you would not be eligible. This is why it is so important, to participate in a trial that is likely to make you eligible. Do things that help you get prioritized.
Go find out where you stand.
This is important purpose.
Monday, August 3, 2009
Don't ask.
You know, sometimes I just don't think people get it. They read the words I write but, I am curious as to whether they really get the impact. Do they really understand who my children are? You see, I am not a particularly gifted writer as anyone that has ever attempted to edit my work will attest. I wonder, do I get the point across? My twerps are on their own level. They do the unimaginable, even amongst those who do the unimaginable. I just don't know whether I have the gift to tell their stories. Do my words do them justice.
I just don't think they can.
Perhaps a picture will tell a thousand words.
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"Daddy, um, come here"
This is what purpose is all about.
I just don't think they can.
Perhaps a picture will tell a thousand words.
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"Daddy, um, come here"This is what purpose is all about.
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