Friday, February 26, 2010

I wish tomorrow was my 6th birthday.

So often in life we big "smart" adults get wrapped up in all of this work stuff. Day to day we do all of this very important stuff. This "stuff" is critical. The "stuff" that I do is often so important that I often work through lunch. In fact, everyday I get up at 3 or 4 in the morning so that I can get more "stuff" done.

It is not just me. Lynley has important "stuff" too. She gets up just as early as I do. She is in important meetings everyday and, like every one else, seems to always be working to get all of this stuff done.

We sacrifice a lot of our lives for "stuff." We stay up late, get up early, work through lunch and even through the weekends. We have all of this important stuff to do and we sacrifice our lives a piece of ourselves for it.


You know, I have worked straight through most of my birthdays. They have always been busy days but probably no busier than any normal day. Yet, about the only time that I allow myself to veer away from the tasks of the important stuff at hand is to sit down with the family to open presents and eat cake. My birthday isn't special. It is all for them. After all, I am an adult. I have important stuff to do. I mean, come on, it was only a birthday. I am too important and grown up for birthdays.

But, should I be?

Graham on the other hand, took his birthday and used it as a celebration of life. He prioritized his time and his life to be all about his birthday. Did you know that we sang Happy birthday to him all the way to school ( a 30 minute drive ) and when he got tired of that we decided to sing him "You lost that loving feeling." He even got to wear a big birthday crown at school. They announced his name on the announcements. He had cookie cake. He was the center of attention. The entire day was about him. He bathed in the glory and enjoyed soaking up every minute of it. For one day he truly got to enjoy being who he was and celebrate that. It was happy and joyous. It is a day he will remember all year long. His birthday was a blast.

Which one of us is right about birthdays?

Isn't a birthday something we all deserve? Don't we all deserve one day to celebrate who we are -- one joyous day to hug our kids, kiss our spouses, and bask in the glory and joy of who we are and what we have accomplished?

I know I don't let myself. After all, I am too busy prioritizing and doing all of that important "stuff" I do. Ironically, I can't even remember half of the important stuff I had to do last week and I would have no clue of what life and death things I did last month without reviewing my trusty calendar.

If you ask me, this is one of those things that us adults get all wrong. Do you remember when your birthday was one of the best days of the year? Do you remember when you used to look forward to it for weeks? It was a great feeling, wasn't it?

Now, can you remember the last time you felt that way? When was the last time you had a memorable birthday that you genuinely enjoyed and did not prioritize away.

Birthdays are one thing that us adults get wrong. Perhaps, we should learn a little from our kiddos. A little giddiness would probably go a long way.

Once again, we can't see the forest for all of the trees.

Sometimes we need to be our own purpose.

Thursday, February 25, 2010


Happy 6th Birthday Grahamster!

Yep, I remember it as though it was yesterday. It was 6 years ago, to the day, in fact. I was at Cook's in the bone marrow unit with Sydney. In fact, for most of the day's events, Lynley was there as well. Well, she was there until she made all of the nurses and oncologists too nervous and they kicked her out and sent her to Baylor to give birth to the little Dude. You may remember, at this point, his name was Rice. We called him that all through Lynley's pregnancy because that was the size he was when we first discovered him. You may also remember that we had a contest on the Internet to name him - a contest that a few of my friends rigged to ensure that he would be named after them.

It was afternoon. Sydney had just finished up another 7 hour round of ch14.18 antibodies. Thankfully this was a GM-CSF round so we did not have to contend with the ugliness of an IL-2 hangover full of fever and wacky electrolytes. Sydney seemed to be doing pretty well so we asked my mother to come stay with her while I hopped over to All Saints to share in the delivery of the little Dudester. It was not long before he was there and in my loving arms.

Little did I know what an awesome little boy he would turn out to be. He far exceeded my expectations.

Graham... What can I say? He is awesome. He is better than his Dad in just about every way. I guess we have to thank Lynley's genes for that. Thankfully he is my little twinner so everyone will still think it was me that gave him all of his fantastic qualities. Sure, Graham is smart and athletic. And did I also mention that he was also extremely handsome? Well, he is. All of that is well and good but there is something about Graham that sets him above an beyond all of that.

He is compassionate.

He is the nicest and most caring human being I have ever met. I mean that genuinely. He is unbelievably kindhearted. There is no doubt in my mind that he will go on to surpass everything that I can envision for him now. I don't know what it will be but, mark my words, Graham will change the world some day. I don't know whether he will be a doctor, a lawyer, or a beautician but I can tell you this he will achieve greatness. He will change our world. There is no doubt in my mind. His heart is too big to be constrained.

He makes me proud with every single breath he takes.

I love you son.

Happy Birthday.

May you find your purpose.

Tuesday, February 23, 2010

Random thoughts on refractory disease.

Neuroblastoma seems to come in spurts. I know that there is nothing statistically significant but I have always been surprised by diagnoses. Many hospitals will have only a few diagnoses one year and then have 10 the next - and all within a few months of each other. It always seems strange but it is consistent enough that I know it is just the way things seem to happen. This seems to be true with other things as well. I can tell you that people contact me about neuroblastoma in the same way. One week I will have one person email me and then the next week I will have 10 contact me within a few days of each other. I don't know that this has any relevance in the world but it is something that has always amazed me.

What can I say? I have a simple brain and shiny objects excite me.

This week I have had some extremely interesting questions and what I would consider a rash of parents contacting me about "non-responders" and/or refractory kiddos. These kiddos and families are generally the ones that I often grow the closest to and know the best. This is probably simply because I get to know them the longest. In fact, 3 of my 4 best friends in the neuroblastoma world are parents of refractory kiddos. So, in that sense, they are close to my heart.

Refractory kiddos are primarily those kiddos that have stage 4 high risk neuroblastoma that partially respond to therapy but despite all of our best efforts don't ever seem to achieve remission. Their disease seem to take root in their bones and, like the gum that Ainsley left on my favorite comforter, never seems to go away.

It seems to me that about 20% of the high risk neuroblastoma population falls into this category. They finish the 5 or 6 rounds of the high dose induction and they still have this stubborn disease lingering in the bones. Some end up having MIBG therapy, some go through transplant, some go straight to antibody therapy, and some don't do anything at all - all with differing amounts of success. Thankfully, some of these kids will eventually achieve remission and go on to live normal disease free lives. Many others will never achieve remission, yet, they will go on for years, moving from one low dose therapy to another with this smoldering stable disease. Some will find minor improvement with various low dose phase 1 trials but most will just continue on a stable path.

I know what you are thinking. What made the difference. Which therapies worked?

All of them? None of them? Some of them?

I wish I had an answer. It isn't that simple and I have not discovered one simple solution. With the exception of the 'do nothing' population, I have seen them all work and I have seen them all fail with no sort of rhyme or reason as to why.

A few years ago there was a group of researchers that actually looked at this group from the standpoint of survival and found this group to have some of the longest average survival. Ironically, it is not this slow responding disease that is the worst. It is often the most responsive disease to therapy that can be some of the scariest. I know that seems counter intuitive and not what many parents would like to hear but it is often true. I have always attributed this to the fact that aggressive disease was always growing more quickly and because much of the chemotherapy targeted the fastest dividing cells these were always the first to die. The more of the aggressive cells you have, the quicker the tumor dies. Unfortunately, this quick response can also be the sign of a more aggressive and often lethal disease.

From that perspective, one might be thinking that refractory disease might not be such a bad thing. Make no mistake, you still don't want to have disease left after therapy. You want it gone. However, somewhere between lightning responses and non responses is probably the best. Keep in mind though, refractory is not all bad (no matter what you hear), and I do know of many who have gone on to eventually achieve remission and go on to leave happy lives without therapy and doctors visits.

Don't give up hope. Refractory patients often get the benefit of time which many others do not.

Like purpose it just takes more effort and time.

Monday, February 22, 2010

Twerps atop the podium

Good morning! The Dungan's had an incredible weekend. As we last left my diary, the Dunganlets were preparing for a Tae Kwon Do tournament in Plano. For those of you that were following Lynley's tweets you already know what a great day we had. However, for those of you waiting to get my official report, my kiddos dominated.

Graham and Sydney both won gold medals in BOTH forms and sparring. This is a pretty significant result as it is the first time that both kiddos have come home from a tournament with double golds at the same time. Furthermore, I must tell you that they also did not win by just a little bit. They smashed the competition...

I have never seen Graham spar better. I think that is largely due to the fact that he listened to his sparring coach, Master Paul, intently and followed his directions superbly. Graham mastered a wicked cover punch and roundhouse which left his opponent on the floor after nearly every point of contact. It was nowhere even close. He was down right fierce. Unfortunately, he did not throw his first back kick in competition. However, in retrospect, he probably was not quite ready.

Sydney was masterful as well. She was faster than I had ever seen her before. In fact, I don't truly ever remember her receiving a kick. She seemed to dodge everything that was thrown. She also fought more cleverly. She did not throw unnecessary kicks and seemed to only kick when she believed that she could score. The helped her conserve more energy. Her kicks were still a bit soft but she seems to be improving with time. It was hard to believe she was fighting someone a full belt above her.

This was the first time that I can ever say that Graham and Sydney truly dominated in a tournament. They were heads and shoulders above the competition. I think that was more of a characteristic of this particular tournament. I do not think they are necessarily this dominant amongst the rest of their age group. With that being said I think this was the boost of confidence they needed before they headed off to state in the next couple of weeks.

It is amazing how far they have come.

Think about it - stage IV neuroblastoma to Tae Kwon Do Gold medalist in sparring.

That is quite an amazing accomplishment.

That is the stuff purpose is made of.

Friday, February 19, 2010

Charter sucks but my kids are great.

Good morning! I apologize for my departure yesterday morning. I guess it would come as no surprise that I had no Internet once again. Yes, that is 4 different times this month. Thank you Charter cable. Another fine tribute to their inability to provide service. Of course, today they are sending someone out to my house to address the problem. The great irony in all of this the problem was in fact a routing problem on their servers - which I explained to them. Unfortunately, after talking to two techs and a supervisor that clearly did not understand the basics of IP addressing they decided to send a technician out to my house to check my wiring. Thankfully at some point yesterday afternoon one of their network engineers identified the issue and addressed it. The tech is still coming out to my house - too funny.

Too bad. Had they listened in the first place I could have saved them 8 hours of outages and a trip to my house.

Yes, I am still bitter.

They say hell hath no fury like a woman scorned. Well they haven't seen what no Internet does to this daddy.

I guess after yesterday's horrible tragedy in Austin I have to be careful about my rants. I don't want them to be taken out of context. I don't have a plane and I have no plans to fly it into the Charter building. I just think everyone should be aware of their horrible service and incompetence.

So, enough about horrible Charter communications. (get AT&T Uverse or Verizon FIOS)

This week has absolutely flown by. It did so without me mentioning very much about my beloved kiddos - all of which are doing superbly. In fact, first thing tomorrow morning we will be heading to another Tae Kwon Do tournament. This is a smaller tournament but one that should help get us ready for the upcoming state tournament which is just about a month away. It will be a great opportunity to see where we are and what we need to work on to prepare for state. The kiddos both had private lessons this week in preparation for this tournament.

For Sydney, it is all about increasing speed and impact. She is undersized and probably always will be. For her to compete, she needs to move faster and hit harder than her competition. We already have one great example of this technique on the team in Elias. He is a 13 year old black belt. His most common attack is a blur - you don't see him coming or going. He will be a great role model for Sydney. He is at the bottom of his age group and extremely undersized, yet, he already made it to the US Open quarter finals this year. Sydney is delighted to hear that she is being trained to fight like Elias. She has even started working on her own strength training at home on her own volition.

Graham is not quite at the mental game level as Sydney so his practices are focused more on defensive combinations. He is perfecting a defensive back kick which should give him a solid edge over the competition in his age group. At this age it is kind of like going to a BB gun fight with a shotgun. This is likely the first time he will begin to throw this kick in competition and will hopefully set the stage so that he has adequate level of mastery by state.

And Ainsley. Well, there are two great things about Ainsley. She has mastered a cartwheel and a forward flip at the age of 4. I really don't know if that is any good. All I know for sure is that I am 38 years old and I can't do either. The other great thing about Ainsley is that she did not create any major explosions this week. No fires and no floods.

If you ask me that is another amazing accomplishment.

Well I had best be off. Wish the kiddos luck and follow us on twitter if you want to receive the updates. Lynley will be providing minute to minute Tae Kwon Do coverage on her twitter account (@ldungan).

Purpose awaits.

Wednesday, February 17, 2010

An apology

I am happy to report that yesterday's seminar was a hit. Personally, I felt like it could have been separated into about 4 separate seminars to truly delve into all of the great nuggets of information. However, everyone still seemed pretty happy with it. As it was, the seminar went over in time by about 20 minutes. Surprisingly, in reading through the evaluations, it was the first seminar we have given in which the most common comment was that people wished it had been longer.

I think that says something about the thirst of parents for information about neuroblastoma relapse treatment.

It was also the highest rated seminar we have ever given with an overall approval rating of the seminar of 4.9 out of 5 stars. In addition Dr. Villablanca was rated higher than any other oncologist that has presented. I found that tremendously interesting. Regardless to say, it is a seminar worth watching. I will post the video once it has completed encoding and has been approved by the medical experts.

On a personal note, I guess I must apologize for some typos in my blog as of late. Apparently, I have not been proof reading my entries adequately (or at all) before I posted them. While visiting my mother late yesterday afternoon she pointed out that my grammar and use (or misuse) of words was not quite up to par. Obviously, she did not read my entry entitled The idiot age of parenting or, perhaps, she did and is still reeling from my comments that she too went through this stage.

Hell hath no fury like a woman scorned - and, ironically, no idiocy like that born from parenting twerplets.

So, there you have it. Sorry.

But, I do at least have an excuse, I am an idiot and I have every right to be.

Wow, today I have purpose coming at me from both sides.

Tuesday, February 16, 2010

Online Neuroblastoma Seminar Today

I just want to give everyone a reminder that we will be hosting a free online seminar today (Tuesday, February 16th, 2010) from 1:00 PM to 2:00 PM PST. This first seminar in the series will cover NANT's non-MIBG clinical trials. Dr. Judith Villablanca will be covering the preclinical research, eligibility criteria, trial overview and various aspects regarding the NANT clinical trials. The presentation will be online but you can also participate via conference call. The presentation will be followed by a 20 minute question and answer period in which you can ask questions directly of Dr. Villablanca.

Don't forget a sponsor of the event has donated an Apple iPod nano to be given to one lucky participant of the seminar. A drawing will be held during the presentation. You must be present to win.

You can register for the seminar here:

You can read more about the seminar at The Neuroblastoma Foundation's website here:

Yesterday I had the opportunity to review the materials for this particular seminar and I am somewhat embarrased to say that there were even a few surprises for me. This may not come as a shock to you but it certainly took me back. I pride myself in staying on top of information and, even though I am plugged in to the NANT as fully as anyone can be, I came out of the review with a few surprises.

Like for one, did you know that the NANT has opened one of their protocols to kids in second remission? I did not know that. I should have. But, I didn't. I knew that it was reopened and expanded to look at pharmacokinetics but I did not know it was open to kiddos in second remission. On top of that great little surprise I know of a few other results oriented surprises that will shock a few. Did you know that Fenretinide had 4 complete responses in it's latest phase 1 trial? That is more than many things I can think of. Did you know the response rate of Irinotecan and Temodar? Do you know what the next trial to open in the NANT is? Did you know what the COG is randomizing in the next trial? Do you know what phase 1 trials you should consider in what order?

All of these topics are part of this presentation.

If you get a chance, this one is worth your time.

This one is chock full of purpose.

Monday, February 15, 2010

The stuff teenage boys dreams are made of

President's Day! Yep, the twerplets are out of school and home with Dad today. This is a school holiday so you may be wondering if they had a half day of school on Friday to prepare for this holiday so that we would not bruise their fragile psychies. Well, for better or worse, Friday was cancelled due to a snow day. So, with all of this time off, you must be wondering how they will cope with going back to school without a half day to get use to going back to school again (sarcasm). Believe it or not, they half another half day of school off this Friday. Not to worry, their fragile little minds will not be harmed by the treacherousness of 4 whole days back to school in a row.

Do I sound bitter?

Don't get me wrong, I love spending time with my kiddos. I have just had it with the half days off of school. Either have school or don't have school. This constant half day business is ridiculous and it leaves parents scrambling to care for their kiddos.

Enough said!

Well, I can't come off of this long snow break without some good stories and I must admit that we had some doosies over the last 3 or 4 days. One of the most memorable was at team sparring practice on Saturday. You see, about once a week we have a sparring practice in which several Tae Kwon Do teams from around the area come to spar. This gives everyone some new faces to spar against and helps the kiddos learn to read new opponents. Regardless, this Saturday's practice was a little out of the ordinary because there power was still out at GSX due to the snow storm. It made it for a very cold practice. Actually, the practice was fine for the kiddos that were busy sweating it out. The problem was for the parents and spectators who sat and shivered.

The practice was also a little strange in that of the teenage girls from one of the other teams brought some of her friends with her to the practice. Apparently, they had spent the night and decided to tag along to see what all of the excitement was about. It was not long before they were suited up and coerced to practice alongside everyone else. Yes, I know, not very competitive but this is one of the things that I love about Tae Kwon Do (especially where we do.) It is about fun for every skill level. While practices can be gruelling, the instructors always make it fun for everyone.

Regardless, due to the power outage the class was somewhat small. There were only about 15 sparrers there due to the weather. This meant that there would be a lot of sparring at different skill levels and sizes. It was not long before little Graham was paired up against one of these teenage girls. The first comment from the girl was "Oh, he is soooo cute. I can't fight him." The first sound out of Graham was a roaring yell which echoed throughout the gym. Cute or not, Graham was ready to compete. Apparently this sent a shock to the girl who all of a sudden realized this 5 year old little boy was serious. Graham went after the 16 year old girl with the fierceness of an attacking lion. She didn't not know whether to laugh or run for her life.

Graham was ruthless.

The poor girl could not bring herself to kick Graham and, in all due honesty, was probably a little bit afraid of what he would do to her. None the less, Graham viciously chased her around the ring. She shrieked and screamed as she did everything she could to try and dodge the barrage of fists and feet flying her way. The peanut gallery erupted with laughter as Graham chased this poor girl around the ring brutally sparring his way to glory. At one point her friend jumped in to try and defend her but Graham faced her with a wall of kicks as well. It was not long before she was running out of the ring as well.

Cute little Graham pummeled girls twice his size. Thankfully they dodged many of his blows by running and jumping for their lives. However, many of his kicks did land. The good news is that, Graham did well landing all of his kicks on their chest gear. Note that there is something to be said for that as they were twice his size and their chest pads were much higher than kids his size. In the end, the fight could not continue. Everyone had erupted in laughter, even the teenage girls who were still reeling from their surprise at Graham's tremendous ferocity. When the whistle blew, Graham immediately reverted to his sweet and shy little self. There he was, just as cute as could be, politely bowing to a girl twice his size. The change in his demeanor was night and day. This was met with another roar of laughter.

After practice though the girls gave it back to Graham. He was pummelled by teenage girl hugs and cheek kisses.

Graham had no idea how lucky he was.

I can guarantee you that it was the stuff of the dreams of every teenage boy.

I will save this little memory for you Dudely.

In about five years you will think this is your purpose.

Thursday, February 11, 2010

The idiot age of parenting

I am happy to announce that Ainsley made it through a full day of school. I must admit, after the success she experienced the day before, I was skeptical. Although it is quite clear that she did not fool her parents, I was not sure whether she would try to "remilk" her teachers for everything that they were worth.

I don't know whether she tried and failed or whether she was smart enough not to try at all but I did not hear even the slightest of whispers from either the nurse or her teachers.

That is good news.

I think that Lynley and I are starting to enter a whole new era of parenting. They have mastered the skill of wearing us down. In fact, by the end of the day, we both seem to be running on autopilot. Running on stand by power we no longer have the capacity of thought. We just act. We are old, worn out and our brains our tired. We no longer understand even the simplest of concepts. We don't interpret. We simply respond according to the few rules that we can remember and that we know we must enforce.

There is no better example of this type of parenting than when we are at the dinner table. Again, at this point, we have been worn down by a continuous litany of questions like "Can I have a snack?" or "Can I have candy?" over and over again. In fact, I don't think I get through an evening without hearing these questions at least 30 times. At some point you just stop listening and just start responding - "No, dinner is almost ready", "No", "No", "No", "No", 'No", and so on. At some point you become numb.

Even though we do our best, we sometimes find ourselves spouting rules like our parents did - ones that make no sense because they have no thought behind them. Last night, Lynley fell victim to this.

After being asked no less than 10 times by Ainsley if she could have dessert after dinner Lynley spouted, "Ainsley, you may not have your dessert until you finish all of your french fries." You see, Ainsley had eaten all of her main course and chomped down on all of her vegetables. The only thing left on her plate has french fries. The rule is that you can't have dessert until you have cleaned your plate. However, any rational person certainly would not force their children to gulp down some fattening greasy fries so that they can have dessert. I can understand "eat all of your carrots" or "eat all of your green beans." But, "eat all of your french fries?" This is a perfect example of autopilot parenting.

When she said it Lynley and I both looked at each other. At that moment we knew we had crossed the line.

We have become our parents. We no longer make sense.

Oh, and DeeDee, MiMi and Papa, don't take offense. You give us hope. At some point you regained your brain cells and your will. We have just entered this stage of parenting. Hopefully, someday, we will regain ours as well.

Purpose give me strength.

Wednesday, February 10, 2010

Little Miss Double Entendre

Late yesterday morning I received a call from the school nurse. This call started out much like the others - "Guess which one I have in here today?" I quick replay of the mornings activities and there was no doubt in my mind - Ainsley.

You see, before school Ainsley was completely full of snot (medical term - different than her normal state of being). Being the doting dad, I gave her a syringe full of some desnotinator (decongestant for you medicos). In my mind, this would have two great effects. First, this would help with the congestion. Second, this would provide her with the necessary buzz with a big old hazy smile to start her day. The good news was that she was not showing any other symptoms. No aches, no pains, and no fever. Regardless, for good measure, I also gave her a dose of Tylenol. I contemplated that this would help soothe any congestion headaches that may be on the horizon and might also provide the extra grease she needed to get her wheels rolling smoothly.

Yeah, Yeah, Yeah. I know. Dr. Debbie would certainly be giving me that condemning look. But, hey, think of this as preventative maintenance. After all, I have a child with neuroblastoma and I learned to become quite liberal with things like this. Take Vistaril for example. When Sydney was not sleeping particularly well or seemed out of sorts we applied liberally, even though she was showing no sign of allergic reaction. (Keep in mind, Vistaril does have indications for treating tension, anxiety, and inducing sedation. I just don't necessarily know that we had a definitive medical reason for doing so.) None the less, we did it and I think we were all better off for it. This is no different - just a little preventative maintenance.

As you can tell, this was pretty much all for not.

Nurse Moore let me know that Ainsley was in her office complaining that her belly hurt. The good news was that the snot was draining. The bad news was that instead of draining into a tissue is was draining right into her belly. My best guess had that as the source of the stomach upset. The solution, give her a cracker and a few moments of rest and see if we could settle her stomach. Let me know if it did not improve.

About 2 hours later I received a call from one of her teachers. All Ainsley wanted to do was rest and cuddle up in the teachers arms. I had better come pick her up.

I arrived at the school about 30 minutes later to find Ainsley cuddled up with a comforter and pillow. She was just hanging out in a quite corner of the room while the rest of the class worked away. The moment a walked in she hopped right up and made a beeline towards me.

"How are you Ainsley?"

"Super Daddy, I love you."

She jabbered all the way to the car. When we got home a made her hang out on the couch but little miss busy body couldn't stay still for a moment, running out to the playroom to get more toys. All in all, she had a great afternoon. It could not have been better for her.


I can see that I am already going to have to keep my eye on Ainsley. While there is no doubt that she did not feel 100%, I am a little surprised that they would not keep her there at 99.9%. She apparently snowed them over pretty well or she made a miraculous recovery. Who could blame her? Act a little lethargic and you get a pillow, a comforter, first class service, and some time to spend with Daddy. There is no doubt in my mind that Ainsley sees how these pieces fit together and I would not put it past her to try it again just as soon as she can - possibly as ealry as today.

Clearly she has two cases of snot. One that keeps her nose stuffy and another that helps her slip through the cracks of school attendance.

God love the little snot.

Purpose give me the strength to deal with her in her teens.

Tuesday, February 9, 2010

NANT Online Seminar February 16, 2010

I wanted to let everyone know that on next Tuesday, February 16, 2010 the Neuroblastoma Foundation ( will be hosting an online seminar on the NANT Clinical Trials. This first seminar in the series, Overview of NANT Clinical Trials - Part 1, will be covering the NANT's non-MIBG clinical trials. This presentation is for parents and caregivers of children with neuroblastoma. You can sign up here:

The purpose behind these seminars is to get the facts out to parents of children with neuroblastoma. While the presentation will cover the preclinical research supporting the trials, eligibility criteria, protocol information, etc.; the ultimate purpose behind these online seminars is to help parents and medical professionals understand the information necessary to decide whether one of these studies is appropriate for a child. We will provide you with the facts to be able to make this important and informed decision.

If we have seen it once we have seen it hundreds of times, parents and physicians get all wrapped up in the eligibility criteria and the hope of a particular trial without truly understanding the drugs. the purpose behind a particular trial, or the implications of its current dosing levels. Our goal is to delve into the important aspects of each of these trials to tease out the key points that everyone needs to know and consider before putting a child on trial. Many of these trials include drugs which have been on trial before, either in single agents or differing formulations. What can we learn from those studies that can inform our decisions? What kind of disease (bone marrow, bony, or soft tissue) can we expect the treatment to target? What will maximize our opportunity for success? Expect to find answers to questions like these and more.

I will be there. I hope to hear you too.

Information is power -- and purpose.

Monday, February 8, 2010

Completely inappropriate

It was quite a surprise to Lynley that I had not shared a particular story about the kiddos in my diary. While incredibly funny at the time I did not think it would translate very well into the written word. After all, some things you have to be there to appreciate. None the less, this is probably one of those things I will want to remember when the kiddos grow up. But, please beware, reading further may damage your IQ.

First off, I don't appreciate fart humor. In that sense, I am not a guys guy. I just don't get it. Perhaps that is due to being conditioned by my wife. You would be surprised at what can be accomplished by a few slaps across the back of the head. None the less, the point is, I have been conditioned not to discuss this taboo topic.

Until now...

You see, when we go to the grocery store, like most things we do, we do as a family. Quite often, on the weekends you will find all five of the Dungan's out gallivanting through various stores. While it isn't necessary the best quality family time it is yet another chance for us all to be together and that is something Lynley has always been a huge proponent of. So, during our last trip to the grocery store we , once again, found ourselves together. Normally the kids behave pretty well. You know: hands on the cart, walking forward, no fighting. However, on some occasions they just have too much energy. It is on these occasions when I usually take them off on my own to give Lynley an opportunity to focus on the task at hand instead of the gaggle of twerps scurrying in and around the cart.

On this occasion (we were also in a hurry) I elected to take them to the toy aisle. This was a perfect little hiatus as it gave her some peace and quiet and I got a chance to play with the toys. (I mean, it gave the kiddos something to do.) This would have all been well and good had the first thing they discovered not been a self-inflating whoopee cushion. It did not take long before they were all hopping up and down on whoopee cushions and filling the grocery store with the delightful sound of -- well, you know. They were all giggly and mad with whoopee cushion activity. I have never seen them get up and down so quickly.

I must admit the rapid fire barrage of noise was pretty funny. However, as a responsible parent I knew that they could no longer do this. After all, this was not appropriate. Even though I could hear people laughing from several aisles away I knew this was going nowhere good. I asked them to please stop doing it.

Then, for some unknown reason, I thought that they should show their mother. I had a great vision of embarrassing her in the middle of the grocery store. Yeah, I know. This is exactly why I spend so much time in the dog house.

However, that is not the point.

Sure enough, the kiddos were all behind my plan. We snuck across the store back to the vegetable aisles where we found Lynley diligently shopping. There was also a couple of elderly couples (serious looking ones at that) very near her. At this point, I realized that this was not a very good idea. I decided it would be best for me to hide behind an the next aisle. This would protect me from the groceries that I was quite sure were about to be flung in my direction.

Sure enough, the kiddos all approached Lynley and, with a mad passion, they all sat right in front of her cart and began madly hopping up and down on the whoopee cushions creating a symphony of inappropriate noise. Lynley was in complete shock and disbelief at what her children were doing. The older couples gave a very stern look at her. Then it came.


I sheepishly appeared from behind one of the aisle's at which point the entire store erupted in laughter. Even the old folks could not contain their jocularity. For the next several minutes everyone giggled themselves away from the incident. It was not over for me though. Lynley told the kiddos to put the whoopee cushions back and I was instructed to put my hand on the cart and not let go until we were out of the store.

I received a stern lecture and was told to never ever do that again. How old was I? 4?

You see, it really isn't that easy being me.

The good news is that the kiddos got to have fun, I took the heat, and we all learned a very valuable lesson.

Okay, so maybe there was no lesson. But it sure was fun.

Purpose is not always serious.

Friday, February 5, 2010

"Your name here"?

Good morning! Well today is private school d-day. This is the day we have to put our money where our mouths are if we are going to commit to another year of SCS twerplet educational harmony. Not only do we sign the dotted line but this is also the time that we get to put down our non refundable 10% deposit.

I guess you can say that I won't be eating lunch out today. Actually, that's quite alright, I generally don't eat out for lunch anyway unless it is for business.

Yes, I guess we will be moving from Kraft Macaroni and Cheese to the generic version and from Smack Ramen Noodles to - is their a generic version? We have also decided to sell advertising space on the kiddos backpacks and lunch sacks. You know, "this education provided by Anheuser-Busch", "this pantsing provided by Graham and the good folks at Hanes", "this red sticker provided by Bratz."


Not interested?

Well, it was worth a try. Smack Ramen it is. I guess it will be another year before I get a new(er) car.

Oh well, while the dollars may be large it is a small price to pay for the kiddos.

Generic purpose is just as good as the name brand.

Thursday, February 4, 2010


That is the cost of the next year of school for the kiddos.


That is a mortgage payment. Actually, that is more than a mortgage payment but, regardless, that is the chunk of change that we need to come up with if we want the kiddos back in school next year.

I know, I know. Nobody feels sorry for people that put kids in private school. Hey, you could just put them in public school.

There is nothing wrong with that...

For the record, you should know that I am not a private school snob. I went to public school. After all I was a Coronado High School Thunderbird - woo hoo. I would like to point out that I turned out alright without too many idiot-syncrasies.

Lynley, however, was in private school.

Yep, she was a snob.

Regardless, whether we have got snobbery in us or not, the fact for us remains that public school is not an option for us in our current situation. Let's face it. No one wants to put their kiddo in an under-performing school and that is what we would be left with if we chose to pull our kiddos from private school. Public school is not a possibility given our current location.

We could move to somewhere else in Fort Worth, but we can't send them to the elementary school in our neighborhood. Too many bad stories.

So, right now, those are our options - move or pony up $30,000 for another year.

Frankly, I don't have any answers. That is a large chunk of change and I don't know that we can float it. Lynley and I are rattling our brains trying to figure out how we can pull it together but it isn't going to be easy. I don't know what else to cut.

At the very least I am going to have to get a lot more clients, do less non profit work or find a grant to fund a salary for the foundation.

That is a very difficult decision to be torn between two loves. However, family has to come first.

I don't suppose there is anyone out there that needs 6 $5000 web applications/sites built or 1 really big $30,000 web application... If you do, we may just be able to put a brass sponsor plate on the back of of the kiddos school uniforms.

Purpose is not easy.

Wednesday, February 3, 2010

The world has been rerighted

Good morning! Welcome back Internet. I am ecstatic to report that I have now had Internet service for 16 hours and it still seems to be working. That is a new record. Could this be the end of my woes? I can only hope. After all, it is Charter, the future remains in question.

The good news is that I can now talk to myself once again. You might be surprised but, after writing in my blog almost every weekday since Sydney's diagnosis, it has become part of me. Without it, my sanity is even more in question. Without anything to bounce my ideas and mental musings off on they just rattle around in my head gorging on brain cells. It started out to be how I dealt with our journey through the world of neuroblastoma and now it is so ingrained that it is how I deal with life's littlest ups and downs.

Did I mention that I was a dissatisfied Charter customer?

Any way, in my fit without Internet we actually had some things going on in our lives. In fact, Sydney has missed nearly two whole days of school. You see, Sydney woke up on Monday morning with general malaise and the complaint of a headache. By the time, school came around she was not 100% but was not asking to stay home from school. She was without a temp and without any real symptoms (other than a slight headache) so we ushered her off.

Did I mention that I hate headaches. I had them all of the time when I was a child. It is normal routine stuff. They happen.


Then why is it then that every time Sydney has a headache I am absolutely petrified by fear that it is neuroblastoma swimming around in her brain causing all of the headaches. It is the first thing that comes to my mind. Every time.

I wonder if that fear will ever go away.

It won't but I suppose if I am worried about it happening then it hasn't happened, right? I am prepared to live with that burden as long as it does not come true.

Regardless, by 10:30 AM Sydney had already been in to see the nurse twice. I elected to pick her up and see if we could get her in to see the doctor. After all, maybe Dr. Debbie could find something wrong with her that did not scream neuroblastoma. Honestly, while I wanted Sydney to be out of pain, it was me that needed her to see the doctor more than she did. (I told you. I am mental - too many thoughts swimming around the brain.)

Regardless, when I picked her up a gave her some ibuprofen. Unfortunately, Dr. Debbie's office was full. But, by the time we had arrived home, Lynley and I had already come up with a likely cause. Unbeknownst to me Sydney had spent the entire night completely congested.

This was a congestion headache.

A dose of decongestant and her headache melted away. Then, I was left with a fairly active and happy little 8 year old. So much so, she went to two Tae Kwon Do practices that night.

Yesterday, Sydney woke up fine. However she only spent the first few hours at school because Lynley was taking her to see Dr. Debbie as we were concerned that there may be an ear infection at play as well. It turns out she was relatively clear of an ear infection, however, she had some Impetigo. Debbie put her on a course of antibiotics and kept her from school the rest of the day. You know, us dirty Dungans, she didn't want us further contaminating the whole school with our pour hygiene.

So, the good news is that the headaches were not neuroblastoma and the Impetigo was not little neuroblastoma nodules growing up under the skin. Furthermore, I have my blog back and don't have to let my brain fill up with all of these nonsensical worries.

Better yet, Sydney is 100% and ready to head back to school.

It is a good to be back.

Purpose, full throttle ahead.

Monday, February 1, 2010

Sporadic Internet - Thank you, Charter.

After a lack of posting of Friday, you must have thought that I was carted off by CPS for using my mean Daddy voice as described in last Thursday's post.

Nope, and I did not even have to arrange bail. No, once again, my absence was far less exciting. I did not write in my dairy due to a lack of Internet access. Furthermore, after trying to write a few blog entries on my iPhone last year I have written off that method of delivery as overly annoying.

So, to make a long story short, I am fully dependent upon Charter Communications to provide my Internet services (as agreed) in order to publish my diary. As happened last year, I once again find myself without Internet access - sporadically. I am just hopeful that this year it does not take Charter over 30 days to address the problem. Although... They are making the same mistake that they did last year (and the years before) by assuming the problem is at my house. That will simply lead them to a series of miscommunication and finger pointing between the service technicians and the line technicians which will leave me in the middle - completely internet-less. Of course, neither side will listen to me because it must state in the Charter Customer Service rules and regulations "The customer is always wrong (even if they have clearly demonstrated otherwise.)"

Just in case I am not making myself completely clear, Charter Communications provides the worst customer service of any company still in business. For those of you that work in Charter's customer service division I mean no disrespect. You are doing your job as you are instructed. You are not the problem. The problem is complete mismanagement of the entire process from the top down.

Bottom-line, if you want high speed Internet access and you have absolutely no other option then Charter is a reasonable choice, as long as you can accept sporadic service that takes an inordinate amount of time to get fixed because of incredibly poor management.

Oh, and the kid's are doing great. I would love to tell you about them but I am not sure how long I will have Internet access this time and I must get to work while I have the opportunity.

I wish Charter understood purpose.