A valiant effort

Yes, we are back from Austin. But, before I jump into the story I have got to document this new phenomenon I experienced at the last tournament. I think they call it nervousness. To be honest, I really had not felt the same sensation since Sydney's treatment days. But there I was sitting in the bleachers waiting for my kids to take center ring and I found myself fidgeting and ringing my fingers. You might think that I was nervous because this was the first official tournament the kiddos would be participating that scored head shots (kicks to the head) but, no, that wasn't it. I knew both of them could handle it and, if I was being honest, I knew they could deal it out if they were told to by their coaches.

I also was not nervous about them doing their best. I knew down to my very core that they would give it their absolute all. I knew they would put out 110% effort. That was the one thing I knew for sure. No matter how they scored they would walk out of the ring leaving nothing behind.

You see, in all of this not worrying about whether they won or lost, I never considered wow desperately they wanted to win. That strange feeling in the pit of my stomach was not worry about them but, worry for them.

I was a nervous nelly. Here, I had been schooled as a professional athlete. I have played in some of the toughest mental games to be played. In my twenties I had carefully honed those skills. I was the master of cool cucumbers everywhere. Following that we went through Sydney's diagnosis. While I can not say I was ever a cool cucumber during that time (I don't know if that is even possible) I did survive the experience, my sanity and marriage in tact.

It was quite a feat and evidence of my superior daddly coolness.

And yet, here I sat, before my kids in the bleachers quaking in my boots. I was a nervous wreck. How ludicrous.

Graham was first. I should tell you that he aced his forms. No one on the mat even came close. Of the 9 kiddos of his age and belt level he was the clear standout. He easily took home the gold.

Sydney did well. She was technically right on the money. However, the girl right after her showed power like no one else I had seen in their age group. Her technique was not as good as Sydney's but I think everyone was amazed by her power. This gave her the edge and at the end of forms Sydney would take home the silver medal.

On to sparring.

I had sized up Graham's competition earlier. While it is difficult to tell someone's technical level by their form at his age, I could still tell that Graham had a pretty good chance within this group. As a luck of the draw we received a first round by. In watching the kiddos I was completely surprised by the aggressiveness of this group. It was clear that each and everyone of these kiddos was far better at sparring then they were at their forms. This was my worry for Graham and it would come out when he was sparring. All in all, Graham did a great job, he fought well but he still lacked some of the quick thinking he needed. He is still a bit slow and can not quite put together the plan on the fly. Although we practice several offensive and defensive scenarios, he often gets them mixed up and ends up leaving himself open to attack. I think it is partly his age and I am extremely proud of how far he is coming. He gets better with every fight. He is showing technique which is lacking in most of the other competitors and I think once we can get them ingrained a little more he will be unstoppable.

Unfortunately for Graham's sake, he received a silver medal in sparring. It was close but he just missed the big trophy. As they called out the winner you could see the look of dejection on his face. He was heartbroken.

After the awards were passed out I received one of those hugs reminiscent of when he was 2 years old and we, his mommy and daddy, were the only things in his world. It was full, tight and complete. I ached for him but, as I told him, he did awesome and their will be more chances for the giant trophy in his future. I was proud.

Sydney's was next. Sydney showed true skills in the ring and, while the score did not seem to show it, she was in complete control. She dominated. In the end, she would tie and it would come to sudden death. The fact that they tied came as much as a shock to us as it did to the main referee who looked at the score at the final bell and gasped. His words were - "Oh come on, you have got to be kidding me." I should probably also mention that Sydney also threw 2 head shots, her first in competition.

It was sudden death. The first kick landed would score.

Need I say more.


Sydney receiving her trophy.

We could not have been more proud.

It is nice to see purpose rewarded.

The experience is the 12 foot trophy

Wow, is it Friday already? Time has certainly flown by this week. It seems like moments ago we woke up on Monday morning. Well, there won't be too much time to reflect on what happened to all of that time as now we have to fight through a day of work and school before making our way to Austin.

Yes, Austin.

Tomorrow morning the kiddos have their very first Tae Kwon Do tournament of the year. They are pretty excited about it. They heard that the sparring winners would be receiving 6 foot tall trophies and their eyes are filled with hope and glory.

Will they win?

I don't know. I haven't seen the competition. The good news though is that both Graham and Sydney have really grown as competitors. I would say that their technical skills are twice that of what they were prior to entering the previous tournament. However, in this tournament, the stakes are higher there is a bigger prize at the end. It will be very interesting to see how they deal with the additional pressure. At the very least, it will be great experience for them to work through.

As always, their is no pressure to win in the Dungan family. We are very clear about that. Their measuring stick is in the mirror. We want them to do their best. If a 6 foot trophy lies at the end of their effort, great, but honestly, I would be just as happy if they finished dead last as long as they gave it their all and did their best. Their is much more to be learned from defeat. Hey look, I am not trying to be noble here. I credit much of my success to my greatest failures.

You probably also noticed that I am no longer playing professional golf - and yet I still credit those two feeble years on tour as some of my greatest. I learned a lot about myself, my limits, and what was important in life. I am hoping that the kiddos can begin learning those little life lessons through competition as well - win or lose.

So, there you have it - big tournament in Austin. We need to be there (3 hours away) first thing tomorrow morning and believe it or not, Lynley and I still haven't figured out when we are leaving or how long we will be staying. We may leave tonight or we may leave early tomorrow morning.

Who knows?

It is just another Dungan adventure.

I am just hopeful that we all find a pile of purpose at the end of this journey.

In relapse, there really is only one antibody option

Every once in a while I have to come out with a controversial post that I am quite sure is going to make people downright mad. This is one of those posts. Now remember, I have absolutely no medical training. I am just a dad. I have no right to dispense medical advice or give anyone any direction what-so-ever as it relates to neuroblastoma or its treatment.

Still, I am right.

Today's rant has primarily to do with the use of antibodies in the relapse setting. Now, with any story there are caveats. However, I am dealing with a specific scenario and I think it requires some deep thought. I am not talking about the hundreds of possibilities that exist outside of this scenario. I am also not talking about children that have not relapsed. My thoughts on that topic would be different.

Enough said. Now, onto the story.

There have been many oncologists, some of whom I respect deeply, that have been advising patients to participate in the phase 1 hu14.18 antibody study offered at St. Jude's over going to Sloan for 3F8. While I do wish there were other and/or better antibody options for children with relapsed neuroblastoma (and I can think of many), as of this writing, these are the only 2 options we have. Even with this, I don't really believe that it is really an option.

I will tell you why.

The version of hu14.18 that is being offered at St. Jude's comes along with some trial design issues that make it almost entirely worthless. I am not saying that the antibody itself is worthless. In fact, I can make some pretty good arguments that it could, in fact, be one of the best. Unfortunately, in the way that it is being delivered in this trial I don't think it is in most relapsed kiddos best interest.

First,the trial is only being offered to children with measurable disease. The problem that we run into here is that measurable disease is often too much disease for an antibody to handle on its own without something else along with it (like radiation, NK cells, or chemo), in high doses, or for long periods of time; none of which does the hu14.18 trial at St. Jude's offer. In effect, the trial design is preventing the kids that would benefit the most from participating at all and favoring the ones it is probably least likely to help.

Second, as I understand it, they are only offering 4 rounds of the stuff. While I can't point my finger to published data, I think everyone feels pretty solidly that 4 rounds is probably too little antibody to do the job - especially for people with measurable disease. It is this problem that is one of the reasons that the COG modified their hu14.18/IL-2 antibody trial to allow patients to receive up to 10 rounds when they showed some response. I don't know if this is something that has changed with the St. Jude trial but it is a big fallacy when trying to win the battle with the disease. Finally, there is a lot of evidence by MSK which shows that patients tend to do better when they receive more than 4 rounds of antibody. It isn't enough drug. Period.

Third, it is a phase 1 trial. Trust me, I am a huge advocate of phase 1 trials. However, when you have a phase 2 option that is relatively proven, I can't understand why you would submit yourself to a phase 1 dosing trial unless you had no option. If we are truly trying to save kid's lives who have relapsed and have a real shot at a potential cure then the hu14.18 trial simply is not the right weapon to try to consolidate the remission. Look, I am not going to argue whether or not antibodies can replace a transplant. However, they have had some success and in a population that is probably not going to (and probably shouldn't) transplant a second time antibodies remain one of the only options with a proven track record of keeping kids in long term (maybe permanent) remissions.

Look, I like St. Jude's. I like the researchers. I just don't think this trial is in the best interest of most kids who are searching for their second "cure." If you have relapsed and if you have had chemo and/or MIBG and/or a slew of other treatments and you are in or nearing your second remission, antibodies should be on your radar. I just don't think there is any option of where to go in this case.

In this case, 3F8 is the clear winner because of the way that it is delivered, its track record, and its variety of options.

Sometimes you just have to be honest about purpose.

Some Bogey's aren't bad.

Right before Christmas two of our dogs got out. For the record, we had 3. I am quite sure that violates some city ordinance, none the less, that's what we had. By the way, if you are a part of animal control and you read this then I flatly deny having had 3 dogs. Regardless, somehow 2 of the dogs got out. In all due honesty, we never figured out exactly how they did it. I can only assume that someone did not shut the gate all of the way. They must have sneaked out and then the gate must have blown shut because, when I found them missing, the gate was closed. I know, not very imaginative, but that is the best I've got.

The escapees where Norman, our Sneagle (1/2 beagle, 1/2 schnauzer, 1/2 Heinz 57) and Hope, our Sheltie. Thankfully, later that night Hope was recovered. Unfortunately, at some point, they were separated.

We never found Norman. He never ever showed back up and our searches at animal control, the human society, and local veterinary offices were fruitless. We can only hope that he found a nice home with someone. It would not be surprising as he never met anyone he did not like.

It was sad for the kiddos and made for a somewhat bitter sweet holiday.

It did not take long, however, for Lynley to come up with the idea of adding another dog to our menagerie. After all, Hope needed another playmate. Of course, there was a litany of other excuses to go along with that. I was very firm.

No more dogs.

I even sent her the following text to her phone Saturday morning while we were sitting together at Tae Kwon Do. (Yes, we are that odd.)

"We are absolutely NOT getting a new puppy - http://Link_To_Some_Baby_Shelties_For_Sale_Close_By"

Not long later, we had the following addition to our family.

Meet Bogey.

Maximizing neuroblastoma'a piece of the pie

After Friday's post I received a ton of email regarding what could be done to increase neuroblastoma's chance at getting its chunk of the change. For better or worse, that rests in the hands of our researchers. You see, the first great hurdle was getting neuroblastoma listed as a designated topic area. This is where your help is always needed. Each year every disease area is reselected. We have been lucky to be selected twice and this is undoubtedly related to Gavin's efforts. However, all of our voices count and this is something you want your Congressman to know is important to you. You may even want to write a thank you note to thank them for helping to ensure neuroblastoma was on the list - whether they had any part of it or not. Regardless, next year, when they are getting ready to make the selection again, I will do my best to let everyone know.

So, back to the original question, what can we do to make sure neuroblastoma gets a bigger piece of the pie?

Many of you know that I sat on thethe Department of Defense's Peer Reviewed Medical Research Program (PRMRP) Neuroblastoma Research Panel. There were about 30 of us - researchers, physicians, and advocates. Our job was to help score the scientific merit of the neuroblastoma research that had been submitted. All of the research was scored, summarized, and prepared for the next stage of evaluations. However, from a scientific perspective this was likely the last time in would be scrutinized. The next step was to evaluate the military impact of the research and this was completed by the military.

Yes, I said, military impact.

After all, this is the entire point of the Department of Defense. But, don't be to dismayed. There are many opportunities for neuroblastoma research to impact the military. While sure, there are parents of children with neuroblastoma in the military that is not the strongest argument. In evaluating research we also look for things that impact other diseases. In other words, I looked for research that had far reach. The fact of the matter is that at this level (not just DOD, but NCI and others as well.) they are putting resources behind research that has the largest impact. If we are going to succeed we have to show that we will not only impact our own little NB world but that we can do so for other cancers as well. It is these "requirements" that help to ensure that dollars are doing the most good.

You may not like the philosophy. In fact, you may think it is really unfair. But, this is the way that it works and when it comes down big governemental units that are ferreting out funds they are looking to fund that which effects the most people. After all, that is how their success is measured. If we want major league funding we have to fill the stadium with lives.

Thankfully, there is little research that only impacts neuroblastoma. We can always learn things that impact other cancers and diseases. The trick is showing that in the proposal As our researchers are going out for these big dollars we need to ensure that they are keeping this in mind. They need to show a large impact if they are going to have any hope of obtaining this funding.

And now I come back to where I started, it comes down to our researchers. The better they show how their neuroblastoma research is going to impact the rest of the world, the better chance they have at getting funded, and the better chance neuroblastoma has at getting its piece of the pie.

Of course, we all have to remember that I am just a dad with no formal medical training what-so-ever. Furthermore, I have absolutely no decision making power. I am not an official voice and I certainly have no right r permission to speak on behalf of any of these organizations.

Still... If I was going to send in a funding proposal you can bet that I would be sending in a proposal with the best of both worlds - the neuroblastoma one and the wide world of cancer one.

Most of the time, purpose in the real world requires a lot of give and take - and a little insight never hurts.

Neuroblastoma's shot at $50 million

I received an email late last night from Gavin Lindberg. It was a press release from the DOD (Department of Defense) announcing its Peer Reviewed Medical Research Program (PRMRP) funding opportunities for 2010. The announcement stated that the Fiscal Year 2010 (FY10) Defense Appropriations Act provided $50 million to the Department of Defense Peer Reviewed Medical Research Program (PRMRP).

The vision of the PRMRP is to identify and fund the best medical research to protect and support warfighters, veterans, and all beneficiaries and to eradicate diseases that impact these populations. The PRMRP challenges the scientific and clinical communities to address one of the FY10 congressionally directed topic areas with original ideas that foster new directions in basic science and translational research; novel product development leading to improved therapeutic or diagnostic tools, or improvements in clinical policies/guidelines; or clinical trials that address an immediate clinical need.

How does this impact neuroblastoma, you ask?

Well, for the second year in a row, neuroblastoma was selected as one of the 19 FY10 PRMRP Congressionally Directed Topic Areas. This means neuroblastoma has its shot at grabbing its chunk of $50 million dollars of research dough.

This is no small feat and while it is no guarantee of neuroblastoma funding it is an incredible opportunity for researchers studying neuroblastoma. It is yet another alternative for funding and, in a world with a weak economy and ever-shrinking funding pools, this is a huge coup for our researchers.

This opportunity is due in no small part to the work of another father of a child with neuroblastoma. While I still do not completely understand exactly what he does in Washington for a living, I do know that it was due to a large part of his effort that neuroblastoma was included in this exclusive list.

Thank you Gavin.

We all have a little bit more purpose today thanks to you.

Kid brains are awesome

Good morning! After the excitement on Monday there were quite a few people that were concerned when I did not write in my diary yesterday morning. Not to worry, the bad guys didn't get me - at least not yet anyway. No, the reason for my hiatus was far less exciting. I was buried in work.

I know, lousy excuse. But, at least it is the truth.

Look, I know you are tired about hearing me whine about how busy I am all the time. I am even tired of listening to myself. The fact of the matter is that there simply aren't enough hours in the day. If I can just make it through to January 21st there just may be some light at the end of the tunnel.

My schedule was destroyed in December when I took on a project that had a tight deadline. It became worse when the deadline was moved up by 2 weeks. All of this was on top of a schedule that was already too jam packed.

For the record I already know. I have had stern lectures from both my wife and my mother. Yes, a deadly combination. But, I got it. I am too nice. I have got to learn to tell people no.

In the mean time, I have to continue to be a yes man until I finish these projects and then I promise. I will turn into a 'no' man.

Yep, probably won't happen.

Well, enough about poor little me. The week churns on and the kiddos have been busy at school and Tae Kwon Do. They have had two practices already this week and they are lined up for more double practices both tonight and on Saturday morning. This is all in preparation for their tournament in Austin scheduled the following weekend. It is a little overkill I admit. But, at this point, I still think it is doing them more good than harm. Plus, we are all continuing to have fun together. All for one and one for all, right?

There have been some attempted kidnappings in the area over the last week that have been quite the topic of conversation with the kiddos as of late. They seem quite positive that it must be the same person that broke into our cars. I guess the whole car incident has traumatized them a bit more than I had anticipated. I must admit, though, it is fun to watch their little brains work. Their imaginations are running wild and it is a bit difficult to keep them grounded with all of the excitement. It would be a lot easier if we lived in their world though. Wouldn't it be nice if all burglars and kidnappers wore black and white striped jumpers and the same person committed all of the crimes?

Kid brains are awesome.

They keep me full of purpose.