Wednesday, March 31, 2010

A not so gentle reminder.

The Neuroblastoma Walk is this Saturday, April 3rd, 2010 in Fort Worth, Texas. If you have not already registered please do so now. You can register on the website at

I have said it over and over but this is one of those important fundraisers. It is direct impact. You participate in the walk and lives are saved. It is that simple.

People are always asking me what they can do. Well, this is it. One of the biggest challenges we have in neuroblastoma is access to potentially life saving trials. Access to these therapies is often restricted by both dollars and availability, especially in neuroblastoma. As of this date, in the US we are only capable of delivering MIBG therapy to about 5 patients per month. This means that if the spaces are full you may not receive this promising therapy or when you do receive it, it may not be in time. By supporting the walk you are helping to ensure that more spaces are available for therapy. It means that every month another child has a shot to survive.

In this sense, participating in the walk will prolong and save children's lives.

You don't get any more direct than that.

If that isn't incentive enough, the entire Dungan Clan will be there in tow. With all that has been going on with neuroblastoma lately I haven't had much opportunity to give an adequate report on the twerplets. So, if finding out how they are doing is your motivating factor for reading my diary this is a perfect opportunity to find out in person.

Did Sydney get straight As in school again? How about Graham? Is Ainsley dating the entire Pre-K class? Has she gotten in trouble for kissing all of the boys? Is she sneaking off and hiding with them in the stairwell? Are all of Sydney's headaches caused by neuroblastoma or is their something far less sinister going on?

Yep, all of these answers await and, if you can make it out to the walk, you can find out the answers first hand.

I know, I know - cheap shots. I played on your sympathy for children with cancer and if that did not work I even withheld info about my kiddos just to get you to support the neuroblastoma walk.

Bad, bad me.

But, it should also tell you how important this walk is and how much I believe in it.

Please come out and support the walk. If you can't make it, you can even make a small donation on the website. Anything will help and, I promise, it will make a difference.

With hope and purpose - Mark, the neuroblastoma blackmailer

Tuesday, March 30, 2010

A hop in my step.

Good morning, good morning, good morning! Why so chipper you wonder? Could it be the root canal I had yesterday? Nope, not even that. Could it be the 5 pounds I have lost doing Insanity (exercise program) over the last two weeks? Could it be the fact that I have changed my diet since my little heart "episode" and I have more energy?

I don't know.

It certainly was not my trip to the endodontist yesterday. I had a root canal (my one and only) that failed sometime over the last few months (hence my swollen cheek). I did not know it going into it but apparently shedding an additional $1100 from my wallet and an hour of my time is supposed to fix that right up. The good news is that , so far, it feels pretty good (not paying for it, my tooth) and I am hopeful that this time it will stick. I am also tired of looking like a lopsided chipmunk. So, I guess this may, in fact, be a source of my enthusiasm.

The exercise regimen has been pretty exciting as well. Lynley still laughs at me for being inspired by a late night infomercial. In fact, we don't discuss my exercising at all. She seems pretty annoyed by the whole thing. I would have really been in the dog house had I bought it at retail. What can I say, I am the sucker of the family. Thankfully though I bought the package off of Craigs List at about half off. That made her less annoyed but still not chipper.

I never thought I would be the guy doing exercise videos in my kitchen but, hey, whatever works. I like the regimen because it only requires 35 to 45 minutes per day and I did not have to buy any equipment. Additionally it is a 60 day program. I figure I can do anything for 60 days so I am giving it my all. So far I have gained an inch in my chest, lost two in my waist and I am no where near as girthy. My shirts are now tighter in my chest than they are around my midsection - what a strange feeling. Pretty amazing results for 2 little weeks. So, this too, may be reason enough for the hop in my step.

But no, I really don't think it is all that either. Things are just going pretty good right now. Wife is good. Kiddos are good. Spring is in the air.

Ironically the only thing bad in my life right now is the fear of being complacent - the fear of waiting for the other shoe to fall. It was when our life was going so well that neuroblastoma landed in our lives. Whenever things start to go well again, I still fear the worst. Have I been forever reprogrammed that way?

Isn't that strange?

I guess it is all perspective. Maybe it is a gift?

It is what reminds me of the importance of my purpose.

Friday, March 26, 2010

Research and blowing up motorcycles

One of the interesting things about this particular NANT meeting was the fact that they just received funding for another 5 years. So, this was an opportunity to review the comments by the reviewers who awarded them the funding and begin the process of shaping the next 5 years of neuroblastoma research. The last 4 or 5 years have been very interesting and a learning experience for all. One of the biggest challenges has been the disappearance of drug and it continues to be a problem into the foreseeable future.

It has not only been with the NANT. It has happened across the board for many orphan and/ or pediatric diseases. Neuroblastoma has been hit especially hard by this issue. In fact, other than MIBG, I can't think of any phase 1s that have not been plagued by this obstacle. What is the problem? It goes something like this:

New exciting drug is developed.
New drug looks promising in preclinical research.
New drug enters phase 1 and 2 trials in adults.
Neuroblastoma researchers begin preclinical research in neuroblastoma.
New drug looks very promising in neuroblastoma.
Drug opens in phase 1 trials in neuroblastoma.
Drug works great in neuroblastoma.
Drug fails to show much activity in adult diseases.
Pharmaceutical company stops making drug.
Children with neuroblastoma loose drug.

It is this pattern (or ones very similar) that have played out over and over in neuroblastoma. While it is frustrating to us, I can assure you that it is just as frustrating to our researchers. They dedicate a good portion of their life and their research over a period of many years into these drugs to hopefully see them help kids with neuroblastoma - only to see the drug disappear simply because the market is not big enough. Drugs like PZA and CEP-701 are somewhat recent examples of phase 1 and 2 trials that have had promising results where the drug supply has disappeared but I can tell you that their have been many others behind the scenes that probably have not even hit your radar. I can think of 4 or 5 trials that would be open right now if it was not for drugs that disappeared after the protocol was written but before the trial official opened. It is terribly frustrating.

Over the years, the NANT has been very nimble and began focusing on drugs that are approved by the FDA and readily available. This is working well where there is a drug that can hit the target they are trying to achieve. However, there is not always a drug readily available that provides the particular effect that they are looking for. This is especially tricky when your are putting combinations of drugs together. This is where the decisions become very difficult.

Think of it kind of a like a war and think of the drugs like the different type of bombs you can use. The bad people (representing the neuroblastoma) are hiding throughout the city(representing our children) You can't drop the atomic bomb. You will destroy the city (and the child). You have to use a combination of different bombs and missiles to get the bad guys. You find out that most of the bad guys are hiding in a building. Therefore, you use an Irinotecan bomb to blow it up. You find out that , although you killed a bunch of bad guys, several survived by escaping out the back door into cars. You then use a bunch of little Temador missiles to begin taking out the suspected cars. You successfully kill some of those bad guys but, still, some escape on motorcycles. Unfortunately the motorcycles are too fast for the Irinotecan and Temador bombs so we need a special missile that can target these bad guys on the motorcycles. Unfortunately, there isn't a missile that has been developed that can target a motorcycle specifically. However, you know if you could blow up these motorcycles you could take this strategy from one city to another to get all of the bad guys.

So, you begin to build a special missile to go after motorcycles.

You build something and it works, however, you can't get a single company to manufacture it because it just doesn't make them enough money.

This is essentially how it is happening in neuroblastoma research. We are trying to blow up these dang motorcycles and, most of the time, there is just simply not a drug out there in the real world that will shut off this escape root. So, we end up taking chances and unfortunately, in the name of the almighty dollar, we keep losing.

Unfortunately, for one reason or another, it just doesn't make financial sense for big pharma to blow up motorcycles.

I can think of two phase 1 neuroblastoma trials that this happened to in the last year. I can think of three phase 1 and 2 trials that are currently in jeopardy because of the possibility of the drug disappearing. I can think of 5 or 6 clinical trials in neuroblastoma that did open last year because of this type of drug issue. Finally, I can think of 100 trials I could open tomorrow if drug supply has not an issue.

Make no mistake. This is a huge problem in neuroblastoma and a huge challenge.

So, as we begin to shape what the next 5 years of neuroblastoma research will look like, what do we do? How do we stop this from happening? How do we insure that these promising therapeutic options move forward?

There is no easy answer and this is one of the important considerations that I can assure you that everyone is taking under careful consideration.

Sometimes I wish purpose was easier.

Thursday, March 25, 2010

Back from the NANT meeting

Good morning! Ah, there is nothing quite like the feeling of being home. As always, my trip was fruitful and wall to wall with new neuroblastoma information. It is always a reinvigorating experience and it solidifies, in my mind at least, that we are moving in the right direction.

I have had many, many (50+) emails asking me for information about what transpired during these meetings. Trust me, I understand your enthusiasm. The problem is that I have to walk a very fine line. First, you should know that my purpose in these meetings is to inform the research process with the patient perspective. My job is literally to go fight for what I believe is important to children with neuroblastoma. I am there to help them remember who everyone is fighting for - not that they need a lot of reminder (this group gets it). My presence at these meetings is by invitation and for that privilege I pay by signing a non-disclosure agreement. The purpose of the non-disclosure is to protect the intellectual property and unpublished research information. I want to be clear on this topic, however, it has nothing to do with "hiding" information from patients.

To be a good advocate, it is my duty to truly understand the research and issues surrounding each study. Frankly, most of my insight and most of my knowledge comes from having to understand the information inside and out so that I can fight for what I believe is in the best interest of our kiddos. For this purpose, I study the preclinical research for each study thoroughly. I review the medical literature. I ask questions. It is this exercise which helps me understand what the key points are about any clinical trial. It isn't that I am exposed to any secret response information. In that sense, I am not exposed to anything that would necessarily benefit a particular patient. In truth, no one really is. Much to my frustration, patient response data is blinded to everyone including the principal investigators until a trial has closed. No one truly knows how the trials are doing until they are finished. We are, however, exposed to safety and toxicity data (i.e. what toxicities the patients are experiencing.) but this is no different than the information that any patient or parent would receive if they put there child on a trial.

I guess what I am saying is that I don't have any more secret information than a typical patient would receive if they were thinking about participating in a trial. I do though, have a more thorough understanding of it than most. That is not because I am smart. That is because it is my job.

What I do get, is an in depth education of all of the information. I study it. It is this in depth study of each trial that gives me insight. This foundation helps me better understand the mechanics of each trial and get a better grasp of exactly what is going on. I am never provided any specific information that would benefit a patient and I could tell you that if anyone of us were, researchers and physicians included, we would fight to ensure that that information made it out to patients. It is not "secret" information. It is education that can make the difference between life and death.

There are no conspiracies - just a whole lot of very dedicated physicians and scientists who are fighting very hard to help our children.

Don't forget that.

With all of that being said I am finally in a position where I can talk about the meeting Unfortunately, today I am running out of time. So, we will need to wait until tomorrow. In the meantime, rest assured, good information is coming.

There are many who share our purpose.

Monday, March 22, 2010

Back in the City of Angels

Good morning from the City of Angels - Los Angeles. I arrived last night and am getting ready to face my first full morning of wall to wall research. It all begins at 7:00 AM. It has already been an interesting trip. I had the privilege last night of attending a dinner with several of the NANT leaders and a few of the external reviewers.

External reviewers? Yes, you see, the NANT is accountable to many and one of the most critical is the NCI. Every year they are reviewed for the quality of their research and the directions their research is going. The first portion of the meeting each year is a presentation on the 4 research areas that make up the Program Project Grant (PPG). The PPG represents over half of the funding that the NANT receives. It covers much of the basic science research that serves as the foundation of the clinical trials that we eventually see. It does not, however, cover the bulk of the clinical trials cost. This is why I have always been such a believer in supporting the NANT. The quality of the research is there. The problem is getting the funding to get the research into the kiddos. That comes from private philanthropy and every $3000 - $6000+ they raise gets another child on trial (depending on the cost of drug and supportive care). Regardless, today is an important day for the NANT as their work is reviewed by outside medical experts.

But, back to last night. As I mentioned, I had the honor to join all of these "big brains" around the table. With most, I discussed their respective research initiatives.
  • What are they doing?
  • How are they doing it?
  • What do they believe?
You would be surprised at how much more information I learn from these little discussions. These impromptu talks are often more fruitful and interesting than any of the science that I could garner from simply perusing an abstract or reading some articles.

One of my discussions focused on genomics and the interesting anomalies between NMYC and non-NMYC amplified tumors. I know, for many of you that sounds like fingers on a chalkboard but, hold on. It turns out that this little "nerd" conversation actually relates to little old Sydney. As many of you remember, Sydney was NMYC amplified. That is a horrible prognostic indicator. Or, in other words, bad news about survival. However, I was surprised to find out that their was a good subset in this population. Yes, their is a certain population of NMYC amplified kiddos that did rather well in comparison to the rest. Surprisingly, and unbeknownst to me, their was an abstract written by Dr. Cohn at the 2006 ANR which discussed this anomaly. In short, their is apparently a population of NMYC amplified but hyperdiploid kiddos that have done well. AND, guess what?

Sydney was hyperdiploid.

Now, I have not yet reviewed the abstract. Furthermore, I can tell you that this seems in direct contradiction to some research that the same group published about a year before the meeting at the ANR. However, the fact that they did provide an abstract back then and the fact that this pattern was seen again by another well respected group recently using different methodologies seems to indicate that this may just be real.

Could this be one of the reasons that Sydney has thus far survived the beast?

Very interesting, isn't it? Now, I would not rush out and ask your oncologist to run a test on your child's tumor. Until, I read it myself and talk to all of the big brains involved I won't know how definitive it is. However, if it is true, it could impact your treatment decisions. For example, I might be more inclined to participate in trials that extend treatment or offer novel therapies if I have a child that is NMYC amplified but NOT hyper diploid as opposed to one who is not. However, how big the effect is and how meaningful is yet to be seen. How big of a difference is there? I don't know -- YET...

Very, very interesting.

Anyway, I will research this later. This is a different post than I normally write. I usually do all of my research before I post something. So, take this with a grain of salt. However, I thought getting it out there may stimulate some good discussion from some differing perspectives. As I get time over the week I will have more discussions and perhaps find some more definitive answers.

Until then, purpose churns on.

Friday, March 19, 2010

De-earring-ing and a trip to the NANT

Good morning! I am late getting to my diary this morning. Although I woke up at my usual 4:00 AM, I was buried in email and research. The next thing I knew it was already 7:00 AM, so, this will need to be a quick entry.

First off, Sydney's earring extraction went wonderfully. It only took about five minutes. Of course, that was after almost two hours of waiting. The procedure was completed in a typical clinic treatment room. Thankfully it only required a small incision. As with anything Dungan, we were all present for the de-earring-ing. Surprisingly Ainsley was upfront and center for most of the procedure. I am unclear as to whether she has an interest in becoming a doctor or nurse when she grows up or whether she was simply showing her masochistic side. Regardless, she seemed acutely interested and not the least bit bothered by the blood.

On a separate note, I am off to Los Angeles for the Annual New Approaches to Neuroblastoma Therapy consortium meeting. Once again, this year I will be making a presentation on behalf of the NANT Advisory Council and parents of children with neuroblastoma. Each year I am privileged with the opportunity to have our voice heard. Once again, I am ecstatic to report that they have instigated nearly every change that we have put forward. The have implemented more multi-agent trials with therapeutic backbones, the have integrated new trial designs, increased the age limit on several trials where applicable, and they have made incredible efforts to inform the research process with parent perspective, among other items. I should also note that many of our "suggestions" were already implemented well before we had even thought of them. The researchers of the NANT get "it" and they do an admirable job on behalf of our kids. In short, they have been incredibly receptive and have gone well beyond lip service by constantly evolving what they do to help benefit our kids - both now and in the future.

Well, they have done that across the board with one single exception, which I will continue to fight for tooth and nail. The subject of debate is the early release of response data. It is a complicated subject which, intellectually, I understand both sides of. However, the parent in me still thinks it is a necessity almost regardless of the cost. However,I also know that the release of this data has the potential to create some very poor treatment decisions. It is a double edged sword. Regardless, this will be another opportunity for some good debate.

I will also be focusing my presentation on the subject of education and what the NANT needs to do to get information into the hands (and heads) of parents and oncologists. Seeing things from a bit of the inside, I also see the large amount of misinformation that exists out there in the real world. I will be implementing several strategies to ensure that over the next year these items are addressed. I want to be clear. It isn't that the information is being withheld. Everybody wants the information in the hands of those that need it most. Their simply isn't a method, plan, or resources to get it out there. Thankfully the neuroblastoma researchers and oncologists have been incredibly supportive. I will be presenting a plan and strategy to get information to parents caregivers and health care professionals.

Well, I had best be off. The purpose flood awaits.

Thursday, March 18, 2010

Sydney Surgery Today.

Good morning! Well, believe it or not, Sydney is going in for surgery today.

Whooooa. Where did that come from?

Relax. This is not neuroblastoma related. However, the story behind this surgery is pretty interesting.

You see, last Friday morning was going along just as any other. The kiddos woke up, they got dressed, and they made their way down stairs for breakfast. As usual, I made them a gourmet breakfast of a banana, some cereal, and some scrambled eggs. As they ate, Lynley and I went through the hustle and bustle of getting their backpacks packed, ushering out their meds, and ensuring all of their homework was checked.

See nothing special here.

However, as Lynley was brushing out Sydney's hair all of the normalcy would disappear and the next sequence of events would lead us to where we are today - surgery.

You see, as Lynley brushed out Sydney's hair she apparently knocked off the diamond from one of her earrings. As any loving mother would do, she apologized and began to remove the broken earring from Sydney's ear. However, there was a problem, Sydney's ear was infected. (This is apparently what happens when you let an 8 year old get earrings and aren't religious about ensuring that she disinfects her new holes properly.) Regardless, her ear was infected and, unfortunately, the "infection juice" (yum) had crusted over the earring clutch making it nearly impossible to remove. Somehow, in the effort to remove Sydney's earring, half of the post and the setting (minus the diamond) disappeared inside her ear. In other words, in an effort to remove the clutch Lynley accidentally pulled the front part of the earring into Sydney's ear.

After some fiddling and a trip to see Dr. Debbie it was decided that it would have to be removed surgically but only after we got her under some antibiotics to deal with the infection.

For those of you putting two and two together. Yes, Sydney fought in the State Taekwondo Championships with an infected ear and a metal post sticking out the back of her ear.

She is a tough chick - just like her mother.

So, the good news is that it turns out that the infection has cleared up rather nicely. The bad news is that she is still going to have to undergo surgery to remove the post. That little treat comes today at 3:00 PM when she meets with Dr. Black to have it removed. I am assuming a little Novacane, a small incision, a slight pull, and a stitch ought to do the trick.

On other medical fronts, I have received the reports from the labs from my little episode. It turns out that everything looks good with the exception of my cholesterol. I was given the option to go on medication or to address it with diet and exercise. I am a big believer in avoiding chronic drug use if possible so I have opted for buffness. I have been given 3 months to get it under control. I am charged with losing 20 pounds and getting my eating habits under control. Dang, it is time to grow up.

On another medical note, don't laugh at me when you see me. Yes, one of my cheeks has swollen to twice the size of other. It turns out that the root canal that I had about 9 months ago has failed and I get to have a lucky trip to the endodontist on the 29th to be re-rooted. Oh joy. This is just perfect timing. This weekend I am due to make a presentation at the New Approaches to Neuroblastoma Therapy meeting and I am going to look like half a chipmunk. That is, however, much better than not having the opportunity and privilege of speaking at the meeting at all.

As you can see there is purpose, purpose everywhere.

Tuesday, March 16, 2010

Neuroblastoma Walk for a Cure

Okay, it is time to sign up. On April 3rd, 2010 from 9:00 AM to noon we will all be participating in the 3rd Annual Neuroblastoma Walk for a Cure. You can sign up right now at Even if you can't make it, go to the site and sign up to guarantee your very own official Neuroblastoma Walk for a Cure t-shirt. This is one of those occasions where your support will truly make a difference.

I know.

This year 100% of the funds raised will be utilized to help bring a cutting edge new therapy to the state of Texas.

A little background.

As many of you know, neuroblastoma is an incredibly sneaky disease. Most kids get a laundry list of scans and tests to mark progress and assess response against the disease. There is a litany of blood tests but there are a multitude of scans that they receive. You have probably heard of many of them: x-rays, bone scans, CT scans, PET scans, and MRIs. One that you have probably not heard of is the MIBG scan.

The MIBG scan is probably the most specific neuroblastoma scan that we have. For most patients this is the single tool that is capable of finding cancer hiding in the body that the other scans can't pick up. For this reason, it is a tremendously important tool for children with neuroblastoma. It works where most other scans fail.

Not too many years ago they discovered that they could increase the amount of radiation that they used for the MIBG scan and turn this scanning technology into an actual treatment. You see, if MIBG can find the neuroblastoma why can't it also deliver a payload of radiation and kill those hard to find cells. It is with this idea that MIBG therapy was born.

MIBG therapy is a targeted radiation delivery system. It can help deliver radiation to the disease while sparing healthy tissue and organs.

MIBG has been tested in clinical trial in the US for several years now. However, it has only been offered in a few locations throughout the US. This is a huge problem as many believe that this is a treatment that should be potentially available to every high risk neuroblastoma patient as a part of upfront therapy. I can tell you from my perspective that I have seen MIBG therapy be the single treatment capable of bringing some kids into remission. When all else failed, MIBG was the treatment that has saved some kids lives.

The funds raised from this years NB Walk for a Cure will help bring MIBG therapy to Texas. In fact, it will make Cook Children's the first MIBG center in the state of Texas and the closest MIBG Treatment center for almost 1000 miles.

This is a no-brainer. There is no doubt that your "walk money" will make a difference.
  • It will go towards increasing the research of a treatment that has already been proven to work in some children with neuroblastoma.
  • It will bring this important treatment closer to children in the state of Texas.
  • It will speed up the research that will help to improve the treatment.
  • It will increase the availability of an important component of neuroblastoma treatment.
Please join us for the 3rd Annual Neuroblastoma Walk for a Cure.

We can make this a reality.

This is one time when purpose will save lives.

Monday, March 15, 2010

A Learning Experience

Saturday was tough. But, then again, one would expect the Texas State Championship to be extremely competitive. First, congratulations are in order. Sydney received silver medals in both sparring and forms. Believe it or not, this qualifies Sydney for the US Junior Olympics in Orlando Florida at the end of June. Graham, however, had a tough day. He finished out of the medals in both forms and sparring. He will need to attempt to qualify at one of the 4 remaining national qualifiers if he has any hopes of competing in sparring at that level. The good news is that, even given his performance, he was guaranteed a spot to compete in forms at the US Junior Olympics.

So, Graham, what happened. Simply put. Graham was out of it. It started off poorly with Graham not paying attention. He was off in la-la land. They had to announce his name 4 or 5 times just to get him on the mat. That was not the way to start and that was at least one mark against him. He has won several gold medals in competitions with his form. He knows it and he has it down. His only problem truly seems to be that he turns his hips during his snap kicks causing his shoulders not to be square. In scoring, this is a small deduction but usually is not enough to cost him anything less than silver. Technically this was Graham's only physical mistake during competition on Saturday. Unfortunately, his lapse was mental and for some reason he decided to do his form at about a third of the speed he normally does. Graham usually has a great pace but this was excruciating to watch. It was this slow pace that put him out of the medals and into fourth place. Honestly, had he had his usual decent pace he would have finished with a silver medal but this was not to be his day.

Sydney's form was technically correct, however, her facial expression and overall demeanor was what cost her the gold medal. It was not that she was not polite and attentive. In her case she just looked like she was put off by the whole thing. It is hard to explain, but with every move came a facial expression that looked like a teenage girl that had just been told by her father that she had to where a longer skirt. Her head was cocked and she just didn't have her usual intensity. That is what cost her the medal. Had she been engaged and sharp she would have had a chance. Although, the gold medal winner was pretty impressive. It would have been close.

Sparring. What can I say about Graham? Technically, he got royally screwed by the parings. His would be the first match of the day and it was against the future gold medalist. The boy he fought was fierce. Some kids just have fight in them and this kid definitely fit that mold. He came after Graham with a ferocity that I don't think Graham had ever seen. The little boy dominated the first round leaving Graham several points behind. This fueled Graham and apparently woke him up because he came out in the second round ready to fight. Graham ultimately won the second round but unfortunately it was not enough to make up for the points he lost in the first round. He ended up losing 13 to 9.

Given the number of kids in Graham's division and the fact that they were running way behind they would ultimately change the format to single elimination. Given the way the brackets broke down this meant that Graham was done and all we could do was watch. The next bout included two kids that Graham had already beat in competitions before. In fact, one of the boys, the eventual silver medalist, Graham trounced in his last competition 13 to 2. That little boy won this match and made it to the Gold medal match but lost to the little boy that Graham fought 9 to 1. The third place finisher would lose 13 to 4 to the gold medalist. Because of the way the brackets broke down and because they switched to single elimination Graham would not get another chance. He was done for the day. It was especially frustrating to Graham who did not understand why and who also knew that he could easily beat everyone else that was competing. I know it sounds like sour grapes but when you are competing to qualify for the US Junior Olympics I think it is ridiculous that they have single eliminations. Oh well, next time we will have to hope for a better draw and a better first round.

Sydney's age division went on almost simultaneously to Grahams. In fact, I had to watch her ring from quite a distance. Ultimately, Sydney psyched her self out. Prior to her gold medal match I could already tell that she was worried about the other girl. She fought very smart as Sydney always does. She listened to her coach well and did everything asked. Her problem? As is often the case, Sydney simply was not aggressive enough. In the end she would throw about a quarter of the kicks that her opponent would and even thought they were well placed it was not enough to overcome the points generated from her opponent. For Sydney to win at this level she will need to become more fierce. She will need to be more aggressive. To be honest, I don't even know if she has that killer instinct. However, I think it is a good lesson for her to learn. She has the smarts and the technique. For her the battle is mental. This journey will be a great mental lesson for her. It is simple. If you think you can win - you can. You just have to believe in yourself. If you don't have the confidence - fake it.

In all, it was a somewhat disappointing day from the standpoint of the Dungan family medal count. However, it was a tremendous learning experience. In some ways, I must admit that I am happy that Graham lost. I know that sounds horrible but, in this day when all kids are winners, no one ever gets the privilege of learning from the agony of defeat. This is a good learning experience for Graham. It will motivate him. It will making him stronger. It will make him better. It will bring us closer. Yes, on this front, it was a very successful day. Sure, it would have been great to have the gold medal around his neck but, in growing a great little human being, I think this was a great success.

Can you tell? I am a big believer in failure.
"I've missed more than 9000 shots in my career. I've lost almost 300 games. Twenty-six times I've been trusted to take the game winning shot and missed. I've failed over and over and over again in my life. And that is why I succeed."
~ Michael Jordan
Like with purpose, our greatest glory is not in never falling but in rising every time we fall.

Friday, March 12, 2010

The big prize

Today begins a pretty big hurdle in two of the twerplets lives. After school today we will be traveling to Frisco, Texas for the first part of what is a very important weekend for the kiddos. You see, between 4:00 PM and 10:00 PM today, the kiddos must appear to be weighed in for the 2010 Texas State Tae Kwon Do Championships.

For them this is no small tournament, this is the gateway to the US Junior Olympics in Orlando, Florida and, most importantly to them, a trip to Disney World. Based on their most recent performances you might think that they would be a shoe in, but, this is a different animal. With over 700 competitors from all over the State of Texas this will be the largest competition in which they have ever participated. There will be more competition, more pressure, and a much larger prize - a golden ticket to the US Junior Olympics.

The pressure is on.

For me, it is about grounding them. Personally, I don't care if they win. You know my mantra. The battle is in the journey. Let's be realistic, they have only been doing this for little more than a year and they have only been fighting competitively and seriously for less than 6 months. It would be unfair to expect world domination. However, I can expect them to give it 100% for ever second of the multiple matches they will face. Their biggest battle will be in facing their fears. And, in that battle, their is no doubt in my mind that they will come out as grand champions. It is that journey, in this high stakes game, that is so important for them to experience. If they can just endure, they will come out with an incredible life experience and much better for it.

So, again, tonight is weigh in. All of the fun begins early tomorrow morning. The kiddos are competing in both sparring and in forms. It will be a long haul, 12 hours of competition, and both will have to compete multiple times in both sparring and forms. Gauging by the competition it looks like Graham will have the most. He will have to spar in a minimum of 3 matches and it could be many more. Thankfully, Sydney has less competition but it will not be an easy walk in the park. The good news is that she looks to be at the top of her weight division which should give her an edge.

Once again, you will be able to follow all of the action on twitter. Lynley will be tweeting from her @ldungan account and I will be doing the same from @mdungan. We will see who provides better coverage.

So, there you have it. Another big milestone in the Dunganlets lives.

This is going to be fun.

This is one of those times that we get to see the purpose pay off.

Thursday, March 11, 2010

Do you ever wish life's little lessons were easier to learn.

Good morning! First off, thank you for all of the nice email and messages. The good news is that I am not a goner yet. At least, no one seems to think so. I was able to get into my primary care physician first thing yesterday morning and he was able to repeat all of the tests from the night before. Once again, everything came back great. It seems that if I did have a minor heart attack it at least did not appear to do much damage and, just as importantly, it did not appear to be progressing. Now the trick seems to be in finding out exactly what happened.

Today will be a day of more tests. I had to fast before I completed some of the tests so that is the reason they were waiting to run all of the blood today. Fasting stinks but the good news for me is that I am allowed to have black coffee. It doesn't get any better for me. If I can have black coffee, anything is possible. Not to worry, I drink half caff.

See, I can drink four pots for the price of two.

No, I don't actually drink four pots of coffee a day. However, I heard that you get to in heaven.

Enough nonsense.

Not being able to drink coffee was not actually my biggest concern. What, if anything, to tell the kiddos was actually my biggest worry. I don't want to scare them by any means. But, I do think honesty is important. Furthermore, I really believe that there are lessons in this to be learned by them. I don't think this is an incident to skim over. It needs to be dealt with and discussed. There are hundreds of lessons for them in this one incident. Everything from reinforcing calling 9-1-1 to eating healthy and exercising to help prevent and delay many health problems. The gravity of the situation, at least in my mind, is also a great reminder of the fragility of life and my duty to my family.

Like neuroblastoma, this, in a small way, is a great tool to put things in perspective. It is a new opportunity to prioritize. It is a great reminder.

I just wish these little ribbons on my finger did not have to come from such serious episodes.

Wouldn't it be nice if these little shocks to our system could come without the threat of death?

Like neuroblastoma, I can't say that I am glad this little cardiac episode entered my life but, once again, I can see that some good that has come with it. I will use this as another learning experience and make the best of what I can with it.

What doesn't kill you makes you stronger, right?

I know for sure my purpose is.

Wednesday, March 10, 2010

A heart attack?

Big excitement at Dungan manor last night.

So, there I was, sleeping soundly. After 38 years of practice I am actually pretty good at it. I can put my head on the pillow and sleep right through the night.

At about 12:30 I turned over. I noticed a pretty significant pain in my chest. It immediately woke me from my slumber. I rolled over on to my back to try and figure out what was going on. At first the pain intensified. It went straight through to my back. Just left of my my breast bone it was right were imagined my heart to be. A different pain traveled up my neck/esophagus and seemed to just sit there in my throat.

I was beginning to get scared. Thankfully, and rather quickly after I rolled over the pain began to subside.

My hands became tingly and felt numb.

I had to wake up Lynley.

I reached over and brushed her shoulder. She shot up out of bed. "What? What is going on?"

Jeez, if I was not already having one, she damn near gave us both a heart attack.

I just tried to stay calm. However, all of a sudden, I was washed over by a cold clamminess and I began to shiver.

I explained to her what was happening. I said pretty matter of factly "I don't know what a heart attack is supposed to feel like but I think I might be having one." She pulled out her trusty iPhone (it is never too far from her) and looked up the symptoms. It turned out I scored pretty high.

However, now I was recovering. Other than a little "coldness" I was becoming symptomless. We debated for a few minutes about what to do and the logistics. She we call 9-1-1? Should I drive to the hospital? What about the kiddos? Should I call my mother to come watch them?

Was I just mental?

After a few minutes we elected to call 9-1-1 and take it from there. We knew enough to know that the symptoms could come and go. It was the safest course of action. I grabbed my sweats, some tennis shoes, and my wallet. Lynley called 9-1-1 and with in 2 or 3 minutes the fire trucks and ambulances were outside the house and 6 people were standing around me.

Pretty surreal.

I was still pretty symptomless and I felt mental, but, better safe than sorry.

They loaded me up in the ambulance and the they shot me full of questions. It was not long before I was hooked up to several leads and the EKG was printing the results.

The good news. The EKG looked perfectly good. Heart rate was good. Sugar was good. Blood pressure was pretty high, 156/94, but heck I was sitting in an ambulance in the middle of the street.

I had pretty much resigned myself to heading off to the hospital but, now, being symptomless and some pretty good results with the EKG I had the option of staying home and going to see the doctor in the morning to get some blood work done. It was against "medical advice" (as it should be) but it was a reasonable choice given the results of my tests and my current condition.

So, that is what we elected to do. This morning I am sitting in my favorite place on the couch very comfortably. I slept pretty well the rest of the night and the kiddos were none the wiser.

I told you. It was pretty exciting around here last night. I am just hoping this diary entry isn't my last.

My purpose will be a little different today.

Monday, March 8, 2010

Twerps in Wonderland

Good morning! We have survived another weekend with the twerplets. That is saying quite a bit considering the fact it rained all day yesterday. This meant we spent pretty much the entire day inside. That is too small of a space for 3 wild rug rats. So, we decided to break up some of the couped up chaos with a trip to see Alice in Wonderland in 3d.

Surprisingly, at 11:00 AM (20 minutes before the movie was set to begin) the theater was already jam packed leaving the only space where we could sit next to each other in the very front row of the theater. We were debating leaving when we were told by one of the waitresses that it was the best place in the theater to see the 3d. We decided to give it a shot.

I know, we are suckers...

Viewing the screen during the previews was almost sickening. There is something about seeing that much action, that close that was enough to just about send us in to convulsions. However, after they asked us to put on the 3d glasses the issue seemed to melt away. Outside of a little pain in the neck from looking up, the experience was actually pretty good. I can't speak for the effects behind us but I can tell you that the 3D experience that we enjoyed was exceptional. However, given a choice, I think the next time I will go back to sitting in the center of the theater.

So, in the end, we enjoyed the movie. The movie itself wasn't exceptional but it was entertaining. I can definitely suggest seeing this in a 3d theater. I don't know that I would have enjoyed it nearly as much without the 3d. The kiddos enjoyed it as well. Sydney and Graham both gave it a good rating. It was their "middle" favorite - whatever that means. Oddly enough Ainsley stated that she liked it a little bit and did not like it a lot. That was a typical Dungan female statement if I ever heard one and, like the others, I have no clue what it means. She seemed content to sit and watch the entire movie, only wanting to hop in Lynley's lap during the last 15 minutes or so. I give that a four year old sitting still rating of 3.5 out of 5 stars.

The great news was that the movie seemed to placate the little monsters. They spent a relaxing afternoon doing crafts in the kitchen while Lynley and I went about our chores. Graham and I would cap off the end of the afternoon by conquering a few levels in Wii Lego Star Wars.

That relaxation was all good as we have a busy week ahead. This is the last week before spring break so you can bet that both Lynley and I have to a lot to get done in preparation of a week of juggling kiddos. Sydney and Graham are jam packed with Tae Kwon Do practices this week in preparation for the Texas State Taekwondo Championship this weekend. They will have multiple practices on Monday and Wednesday and even a few private lessons thrown in for good measure. On Thursday they will rest in preparation for their weigh-ins on Friday night in Frisco (about an hour away). This week will also bring a 2nd grade fossil hunt field trip for Sydney on Wednesday as well as their usual litany of homework and parental abuse.

It well be a well deserved spring break for them.

Well I had best be off. As you can tell, plenty of purpose awaits.

Friday, March 5, 2010

Itchy and Scratchy

With our newest puppy came something we weren't expecting - ring worm. It was not long after he arrived that he started losing hair in little circle patches. Frankly, for a new puppy, that was a better diagnosis than many of the other diseases and conditions that we imagined. I guess that ability comes from our years of experience with neuroblastoma. Our minds were trained to look for the worst and work our way backward.

Yeah, yeah, I know, I am still mental.

Regardless, our newest member had ring worm. As you might imagine, it was not long before it started appearing on the girls. Sydney was the first with a nickel sized spot appearing on her right cheek. Ainsley, however, bore the brunt of it. Her arms are covered and there are almost too many spots to count. We have slathered her in antifungal but we are still very much fighting from behind. For several days, her condition was hidden by her sleeves and we only noticed as a result her obsessive scratching. Of course, at that point, she had pretty much spread it up and down and from one arm to the other.

It is contagious stuff.

In fact, even Lynley has fallen victim. As usual, so far us boys have stayed immune. Either that or we are just less fungi. Is that even a word? Regardless, us boys have no sign of the stuff.

We are starting to develop a pattern here. I don't know what it is but this is about the tenth diagnosis in a row were the boys have remained unaffected. I don't know what that says about us boys but it sure seems strange.

Perhaps, we are just not as cuddly.

Or, perhaps, girls really do have cooties.

Well, I had best be off. It is time to slather the girls in antifungal and cover them with band aids.

What a beautiful way to start a new day of purpose.

Thursday, March 4, 2010

The monster is still out there.

Good morning! So, Sydney just came down stairs with a bloody nose. She was also complaining that she barely slept all night. What is the first thing that goes through my mind?

What are her platelets? Is neuroblastoma somehow chewing them up?

Boy am I mental...

It always amazes me how quickly my mind can go back there - back to treatment, back to the worry, and back to nightmare. While logically I know her bloody nose is probably due to the lack of humidity going on in our house and that, combined with her stuffiness (and probably some probing by her finger - eeew!), is probably the source of her problem. Yet, the first thing that comes to mind is - neuroblastoma. It happens so quickly. Before I even have a moment to think that familiar lump is back in my throat and it feels like all of the air has left me.

After 7 years...


Now, don't get me wrong. I don't walk around everyday with the monster sitting on my shoulder. I still fear it. It is always there. But, life is good. While I still can't say that there is a day that I do not think about neuroblastoma, I think that is largely due to my purpose and the fact that everyday I am talking to another parent about the disease.

Neuroblastoma doesn't cripple us. It is a part of our lives and it always will be. There are good days. In fact, there are great days and every one of them I am thankful for. But, in that same sense, it is still there. It quietly haunts us.

After 7 years, I am beginning to wonder if that fear response will ever go away.

I doubt it.

The monster is still out there and it has touched my soul. I won't be able to truly rest until it is defeated.

Now, that is mental. And, that is me.

But, then again, that is also purpose.

Tuesday, March 2, 2010

A Day Chock Full of Neuroblastoma

Yesterday was a busy neuroblastoma day. No, not to worry, this was not about Sydney. This was about doing work for the foundation, however, Sydney was in tow and we had a great morning. I must be honest, I prefer these types of days but, unfortunately, they don't pay the bills. Until I can get some grants in the door I am going to continue to be relegated to working on neuroblastoma part time. The fact of the matter is that when we say we raise money for research or or we fund raise for a particular neuroblastoma education project it is just that. We don't funnel dollars into administrative expenses and the like. So, unless we find people interested in supporting a salary so that we can go out and help and educate families full time we are left with doing it on a volunteer basis. That is okay. I just feel that there is just so much more that we could be doing. The good news is that good neuroblastoma work continues to be done.

Yesterday Sydney went with me to the Chesapeake Energy building. Chesapeake has agreed to help us generate some awareness about neuroblastoma and has been generous in providing us with a pulpit to speak. They provided that opportunity to Sydney as well but, she will be the first to tell you that she was a bit too embarrassed to be up in front of all of those people. It did not take long to relieve her of the dear in the headlights look and she ended up making it through with flying colors The most important point being that we had another great opportunity to talk about neuroblastoma, the problems our children face, and what we can do to help them. I am thankful to Chesapeake for the opportunity and the support.

After that, I made my usual stop by Cook's to visit with the families and many of our friends. It is also a good opportunity to spread a little hope. I remember when Sydney was in treatment and I saw another family that had a child that was 5 years out from their stage 4 diagnosis. That little pass in the hall put a little lift in my step for weeks.

My visit was short lived though as I had a meeting with the NB Love Club to talk about the many neuroblastoma projects going on. Most notable in my mind was the 3rd Annual Neuroblastoma Walk for a Cure coming up in April. With each year the event has grown exponentially and I am very much hoping for the same this year. This is an important year for the Walk as it will be funding an important project at Cook's which will help bring MIBG therapy to the great state of Texas. Assuming we can do our job the funds raised by this year's walk will go to help make Cook's the first hospital in the state of Texas to offer MIBG therapy. In fact, it will be the first in our entire region with the next closest MIBG center being located in Cincinnati, OH. This "little" addition will bring a litany of new neuroblastoma research projects and clinical trials to Cook's, further cementing its place amongst the worlds leaders in neuroblastoma treatment. There are few hospitals in the world that can make that distinction. Cook's will be able to offer more clinical options than many of even the best known neuroblastoma centers - yes, even including Sloan Kettering.

Of course, all of this rest on our shoulders - or, should I say our feet.

I am working on the website for the Neuroblastoma Walk for a Cure and should have it completed for registration in the next few days. Until then ----

SAVE THE DATE -- April 3rd, 2010

See, I told you it was a purposeful neuroblastoma day.

Monday, March 1, 2010

A Medieval Adventure

Good morning! Well, the Dunganlets made it through another successful weekend. The highlight was the celebration of Grahamster's 6th birthday. On Saturday evening we invited two of his friends, Bryce and Bryce, for a fun filled evening at Medieval Times. It turned out that there would be nine of us in attendance. This meant that we would need to take two cars. Somehow, I ended up driving the suburban assault vehicle with the 5 kiddos, while my wife, mother, and mother-in-law drove comfortably in a Mercedes. I know, many will not be surprised that I was stuck in the kiddo car, but I would have appreciated a little help in the chaos department.

In all due honest,y the kiddos and I had a great time. It was loud and raucous but nowhere near as chaotic as the little adrenaline-filled sword-wielding kiddos would make the drive home. Let's just leave it at this: I should have known better that to sit three little sugar-filled 6 year old plastic sword carrying little boys right next to each other. The good news is that there were no injuries. It was just a very, very boisterous car ride home.

For those of you that have never been to Medieval Times dinner and tournament, it is exactly what it sounds like. It is a little boy's dream come true (and a mothers as well, but, I will get to that later. The whole experience is staged around the idea of a 11th century medieval tournament complete with princesses, knights, horses, jousting, and sword fighting. All of the patrons sit around an indoor arena while the action takes place on a dirt floor in the center. Food is served in period fashion. There are no forks and knives. It is all fingers. The fair was not bad. It included a piece of garlic bread, tomato bisque soup, a hunk of potato, a side of chicken, a pork spare rib, and an apple turnover. All in all, again, not bad, but the treat is really the show - not the food.

I must admit it was all pretty impressive. With six knights battling to win the tournament with every weapon imaginable and fighting at full force I was quite impressed. Lynley was impressed as well, but I think that is more because she finally discovered what Chippendale's dancers did when they were not stripping. Apparently they bring their muscles and there long flowing locks to Medieval Times for a nice workout with swords. For those that were not Chippendale's dancers, they must have come straight from shooting covers for trashy romance novels. None the less, my point is, while us boys were grunting at the violent action playing out before us the girls were undoubtedly captivated by some other action playing out in their minds.

All in all, the point is that we all really had a pretty good time. It is one of those things that, if you ever get the chance, is probably worth your while. I am glad we added that notch to our belts but I have no designs on returning soon. Although, Ainsley is already trying to convince us to have her birthday party there as well.

Most importantly, Graham had a great time and a spectacular birthday.

Fully rested, we are all ready to get back to purpose.