Monday, January 31, 2011

A weekend of irony

Well, we survived the weekend and the Tae Kwon Do tournament. None the less, it was a busy weekend. It started with a trip to Addison at about 7:00 AM on Saturday morning. We arrived a few minutes early although it was still a major rush once we got there. For some reason, Graham had decided to take all of his equipment out of his bag after the last practice and he showed up without any gear or a belt. Don't ask me why or how he did it. I have no idea. It was a first for all of us. However, with a little trading through the team we were able to cobble together a full uniform for him.

Both kid's sparred well. Graham absolutely dominated his first match. He obliterated the poor little kiddo. Within about 10 seconds of the second round they called the match and Graham was declared the winner. It was a great start for Graham. The Gold medal match was more difficult and Graham would lose by a point in the last few seconds. Honestly, he could have one the match. The boy he fought was a little taller and it was an advantage that Graham just could not get over that day. An another note, the child Graham fought was so dominate last year that he often fought older kids. So, the fact that Graham stayed with him toe to toe and almost won was a sign of significant improvement. In the end, Graham won a silver medal in sparring.

Sydney had a tougher time in the ring. Although her technique was there and she looked pretty good, something was missing. Honestly, I just don't think she wanted to win enough. She just did not have that fire. If I am being honest, she had psyched herself out before she had even made it to the ring. She saw that the majority of the girls were taller than her and that just took the wind from her sails. She never had a chance. In her mind, she was beat before she even got on the mat. The sad thing is that she probably could have beaten every single girl there. But, it is for this reason we have Sydney in Tae Kwon Do. For her, I could care less if she became the national champion. I honestly don't care if she wins or who she beats. The biggest competition for her will always be in between her ears. In the end, she received the bronze medal.

We weren't expecting to really even place in the forms competition. It has only been a couple of weeks since the kiddos received their new belts and for the most part they really had not even begun to work on their forms until the early part of this week. In fact, Graham did not know his form until one of the other kiddos on the team taught it to him Saturday morning. The great irony is that Graham would learn it so well that he would actually face the boy that taught it to him that afternoon in the gold medal match. Somehow Graham won. I am not going to get into the specifics of whether I truly believed that he won that match but the judges sure seemed to think so. Either way Graham brought home the gold.

Sydney's matches were different. She clearly won every match she participated in. In fact, she was far superior. Unfortunately, the judges seem to miss just about every mistake the other competitors made. Sydney performed her form perfectly and lost the gold medal to a girl her forgot her form and had to stop twice. She lost the silver medal to a girl that made several mistakes. I did not know what to tell Sydney. She clearly deserved the win but walked away with bronze. Oh well, maybe next time.

The tournament took the better part of the day. After a team dinner at chilis we would arrive home at about 6:30PM. Sunday was all about getting our chores done so that we could go help the team move into their new studio. We spent about 7 hours, sweeping, cleaning, laying down the new mats, and moving. I think everyone had a good time.

The kiddos fought in several matches on Saturday and then spent all day yesterday working and playing harder than I.

Yet it is me whose body hurts.

Go figure. At least I have got purpose.

Friday, January 28, 2011

The first domino

Good morning! It is already Friday and time to get our game faces on. Both Graham and Sydney had private lessons yesterday in preparation for their upcoming AAU Southwest District Qualifier this weekend. This is their first tournament of the season and the first major qualifier of the year. While the kiddos have been practicing as hard as ever they have had a relatively light season as far as tournaments have gone. Furthermore, this qualifier is much earlier in the season.

Will they be ready to compete at a high level?

Last year both Sydney and Graham qualified at this tournament. Graham received a pair gold medals and, if memory serves, Sydney received a silver and a gold. However, last year they were tournament seasoned. This was one of the last tournaments of the season and they were riding a freight train of sparring momentum. Last year this was just another domino to fall.

This year it is the very first domino.

There is no doubt that the kids have enough experience. Both are far better than they were last year. They are both smarter and faster. I think the only thing that stands in their way is dealing with their nerves in the very first major tournament of the year. This tournament is much less a battle against the world and much more a battle against themselves.

It is this type of challenge that is the very reason that we put them in Tae Kwon Do in the first place.

They have got the skills. Can they deal with the pressure? Can they keep the eye on the prize?

This purpose is all about developing purpose.

Wednesday, January 26, 2011

Zip - I am gone.

Well, we have sped into the week. Now, that I have started on this contract that requires my presence on sight during business hours it seems like everything has been moved into fast forward. Then again, it might just be this time of year.

Yesterday was a 9 hour day at the office which, in and of itself, is not that abnormal or that big of a deal. The problem was that I spent an additional 3.5 hours on the front end of that day working on the neuroblastoma walk. Then, I spent an additional hour and a half later in the day participating in a web conference on oncolytic viruses. If that was not enough, I capped it all off with another hour and a half NANT Advisory Council meeting later in the evening. In all, it was only a 15 hour day, The problem is that it seems like just about every day is strung together in this manner. Combine that with Tae Kwon Do, cooking breakfast and dinner, and trying to help the kids with homework and it becomes clear why it seems like life is stuck in fast forward.

It does not stop there. This week I have to finish up an online event registration system for the Neuroblastoma Walk, finish up a presentation for the upcoming NANT meeting, get out another mountainous order of Lunch for a Cure cookbooks and somehow keep my brains wrapped around being a business intelligence expert at the office. Yep, all of that, while trying to maintain my status as the best Dad in the entire World - it takes quite a bit of effort to keep the kiddos snowed over with that one.

It sure seems that, for someone that is an expert in business intelligence, I certainly would have found a way to be less busy.

Well, another day in the life...

It is all important.

Family first. Keep food on the table. Fight for kids with neuroblastoma.

That's my purpose.

Monday, January 24, 2011

Extreme Makeover - Dungan Style

My body hurts. Just when our family thought that everything was too busy and we needed a break, we took it to the next level. We spent most of our weekend helping a friend out by tearing down walls, building new ones, and painting. It turns out that one of our friends needed some help to get a new space ready. So, we loaded the family urban assault vehicle up with hammers, nails, saws and painting supplies and spent a large part of the weekend working away.

Boy what a mean Daddy I am! Just after I wrote this heartfelt entry on working them too hard in Tae Kwon Do, I load them up with some manual labor. Well, get this! We must be doing something right because they wanted to go and help. In fact, they took the place by storm. As we tore down walls they helped take the debris out. Then, when all of the heavy stuff had been carried out they picked up a broom and started sweeping up all of the small stuff.

Hold on.

Wait for it.

Yep, they did this all without being asked. The only thing we did was open the car door. The twerplets unleashed a frenzy of hard work all on their very own. I could not have been prouder. It did not stop there. The next day was full of painting and putting up new walls. Graham helped me cut much of the wood by hand (no electricity yet) . Sydney and Ainsley got busy with Lynley painting the walls and removing years of grime from the front windows.

Yep, it was extreme makeover - Dungan style.

It will not come as a big surprise to you that Ainsley ended up with more paint on her than on the walls. I am sure the white primer in her hair will bring a whole new dimension to her school uniform. The important thing is that we had fun and we even got to help a friend out at the same time.

Although I am sore, it was somehow an incredibly relaxing weekend. Go figure.

Purpose always seems to pay you back.

Friday, January 21, 2011

Faking it - a symptom of too much TKD?

My children have sporadic sickness. The thing is, I think they are faking it. On top of that, I am pretty sure that their faking sickness is spreading like a virus. It seems like just about every night one of them has an excuse that they are too sick for Tae Kwon Do. My head hurts, my stomach hurts - you name it. On top of that, they are perfectly comfortable with going home and laying in bed instead of practicing. The problem with this is the fact that they clearly aren't sick.

First, out of the gate, I fully realize that the kiddos are probably doing too much Tae Kwon Do. If you do the math, they have five classes per week for a total of 5 hours. For Sydney and Graham this includes 2 regular classes, 2 team practices, and a sparring class. For Ainsley it is only 2 classes. Technically, Sydney and Graham are only required to go to the sparring class and the 2 team practices. However, they are going to the regular Tae Kwon Do classes because it is the hour before their team practices and Ainsley is in those classes. Since we are already there, they might as well participate, right? (Remember, we Dungans do everything together.) After all, it doesn't make much sense for them to sit on the bleachers. Regardless, the fact of the matter is that they are only going to those two extra classes out of convenience. Oh, and then, I should probably also point out that they have private lessons about once week. As you can see, they have a lot of Tae Kwon Do.

So, is this too much?

Hold on, don't answer yet. If it were that easy, I could have answered it for myself. The other side of the coin is that we are receiving some mixed signals. I should point out that both Graham and Sydney have asked for more private lessons. Furthermore, they have both identified that one of their major goals is to get a medal at Nationals. They fully understand (and take responsibility for the fact) that they must work hard if they are going to achieve that goal.

I want to be clear. It is not us telling them that they must work harder. They came up with that on their own. We are simply providing the opportunity. Clearly, in one sense they love Tae Kwon Do and everything that it brings them. On the other hand, they are faking sickness to get out of classes here and there.

So, given that, what is the answer?

My theory is to let Graham and Sydney sit out of the regular classes if they choose. Then, they can do homework or whatever they like. My only problem with this is that Graham will just sit there and play video games on his iPod. I would much rather see him reading or doing something that gets him up and moving. Sydney will do homework or read. In my book, I really don't see anything wrong with that.


I need some direction for my purpii.

Wednesday, January 19, 2011

Twerplet Overcharging

Well, I have officially returned home from Illinois. It was great to see Grammie again, even if our trip was too short. It was also good to see her in good spirits. I know she has good and bad days but I was given the gift of seeing her on a particularly good day. My time spent with her was so good one could not leave without a glimmer of hope that she could fully recover.

Thankfully, the drive back was uneventful. My mother and I had a rare opportunity for an extended talk. While we talk fairly often it is always short-lived and in concert with normal twerplet chaos. Rarely do we speak for more than a few minutes without our attention being averted by a kiddo hanging off of the roof or setting off small explosions in the back yard. It was a nice trip. It has been a long time since mother and son had just chatted.

It was only 12 hours after that Lynley threw the children at me.

"Here, they're yours!"

By the time I returned home it was quite clear that she had reached her limit. I was glad to come home and not find her duct taped to the ceiling or velcroed to the wall but it was clear that it had been a hard fought fight. In the end, I think the major difficulty for Lynley was that she had not plan anything to thoroughly wear them out. She had anticipated a nice quiet and relaxing 3 day weekend around the house with her loving children but must've forgotten what can happen to the bless-ed angels without rigorous activity.

You see, with our kiddos, you have to wear them out. If you don't drain them down, they just soak up energy. I have no idea where they get it. I think they get it through osmosis or by sucking it through the television set but, if you don't break up all of the relaxation with rigorous activity, their little batteries overcharge and that is when the chaos will reign. If you look closely, you can even see little sparks shooting from theirs ears. At that point, all you can do is duck.

Oddly enough, these are also the times that Lynley starts referring to them as "your children" when speaking with me.

Now, don't get me wrong. Lynley is a loving, dedicated, and gifted mother. And, if I am being honest, is more adept at putting up with their chaos when they are "over charged" than I. She can maintain some semblance of calm and peace.

Not me, I quickly revert to their level.

Regardless, she did superbly and deserved a much needed break.

I was just glad that for once she couldn't blame me for instigating it.

In the end, all have recovered. Now it is time to get back into purpose.

Friday, January 14, 2011

My awesome manliness prevails

Good morning! Well, I am off. First thing tomorrow morning I am heading off to Illinois to visit Grammie and to complete her move into the nursing home. We had held out hope for a long time that she would be able to return home but it seems as though her recovery hit a plateau. Unfortunately, she just never made it back to the point that she could do all of the things necessary to live on her own. I am sad for her because I realize the great loss of freedom that I know she feels but, I must admit, I am somewhat thankful for her safety.

So, for better or worse, I am being called to Illinois to be the muscle. We need to get her completely moved out of her house. I think that is pretty cool. Here I am pushing 40 and I am still being called in to be "the muscle." Either everyone up there has an altered perception of my manhood or I still have it. Clearly be "buffness" prevails. It looks like I can put off that midlife crisis for another few years. I've still got it. I knew all of that Insanity and P90X would pay off.

I will be gone for a few days. This leaves Lynley with a handful. While I know she can handle it completely, I also know that she will be greatly outnumbered. The kiddos are older now and they are much more skilled in the martial arts.

How will I find my wife when I get back home? Will she be brain washed? Will she be sitting, huddling in a corner of the closet? Will she be tied up and duct taped to the ceiling?

No, of course not. This is Lynley we are talking about. If anything I expect the kiddos to be even better behaved.

After all, they won't have me around egging them on.

Wow, I hope Lynley doesn't realize what a pain in the a-- I am while I am gone. I hope she doesn't figure out that it is really me that instigates the kiddos. She won't discover that I am the problem, will she?

Nah, I am sure that won't be an issue. Surely, she is too enamored by my awesome buffness and clear youthful manliness to notice that.

I will however, surely miss all of my purpii.

Thursday, January 13, 2011

A moment out of the rabbit hole

Good morning! Does it feel like the world is moving in fast forward? It sure seems that way to me. So far 2011 has been jam packed and lighting like. It seem almost twice as fast as 2010. None the less, we are all hanging on and so far look no worse for the wear.

Even with all of this fast-paced-ness, we still haven't really received any clarity regarding the lesion on Sydney's breast plate. In fact, if anything, as far as that is concerned 2011 has seemed to bring the great cooling off-ed-ness. Honestly, I expect that is a good thing. We really don't want to be the focus of attention. We don't want to be our pediatric oncologist's number 1 priority. Simply put, if we are not her number one priority then we must not be in that bad of shape.

Actually, I still think the biggest issue is that no one knows what to do with this spot. We aren't getting answers because there isn't one - at least an easy one.

So, we will continue to wait.

I guess the fact that everything else is flashing by so quickly is a good thing. It keeps me occupied. You know, if it weren't, I would probably be obsessing on this even more. I am sure I would have whipped myself into a significant frenzy by now. Heck, I might have even earned me a comfy spot at the funny farm. Yes, I know I am that mental.

The bottom line is this.

While it may look, smell and feel like neuroblastoma, it certainly is not acting like it. And, until it does, we may have no other option but to wait. The good news is that there are many other things it could be but, oddly enough, the problem is that we just don't know what they could be.

That is the reality. Think on that one for a while.

In the end, it is time to hop back into the rabbit whole. There is purpose to chase.

Monday, January 10, 2011

An afternoon of unrealized dreams

I miss being young and nothing made that more evident than this weekend. It was supposed to snow. In fact, the weatherperson was predicting 1 to 3 inches of the white stuff. If I am being honest, I didn't really care. Oh sure, it was an opportunity to make a fire in the fireplace and perhaps even throw a few snowballs at the kids.

(By the way, I cheat. If the kiddos are in the front yard, I make snowballs in the back and then carry them through the house. I then either crack the front door to throw them at them or launch them from one of the upstairs windows.)

But other than that, I also know that snow comes with an unending barrage of chores. It means a constant cycle of clothes going through the dryer, mopping up puddles of melted snowballs on the hardwood floors, and dealing with constant complaints of who hit who with a snow ball.

Boy, the more, I talk the more I sound like that grumpy Dad from "A Christmas Story." You know, honestly, the older I get the more I feel like him. Regardless, these are the things that muddle my mind and clunk around it when I think snow.

The kiddos, though. Oh, they are so different. Not once did they consider the impact of snowy boots on the floors or the fact that I would be spending the afternoon cycling their clothes through the dryer. No, they were consumed with plans to create the World's Largest Snow Twerp and an igloo that they could live in. They thought about how much fun it would to be to watch the kitten hop around the snow and whether they could figure out how to turn their Razors (scooters) into some kind of stand up sled. They spent all morning dreaming and planning of what, in just a few short hours, could be.

If you ask me, it sounds a lot more fun to think about all of the things that they thought about.

Ah, to be young again. I was so jealous of their cavalier attitudes. I was envious of their dreams.

When did I turn into such and old fart?

In the end, we had about an hours worth of snow. None of it stuck. Outside of a few puddles from the rain, there wasn't even anything to clean up.

They were devastated. All of their hopes and aspirations were dashed.

I got out of doing more laundry.

Thank goodness I have purpose to excite me or I would be worthless.

Thursday, January 6, 2011

My odd relataionship with twerp chaos

Can you hear that? That is the sound of quiet. The rugratigans have all returned to school. There is no more fighting over who said what, no more bickering over who hit who, and no more tears over who spilt the milk.

It is both happy and sad.

But there is one thing for sure. It is quiet - eerily quiet.

For me this is not new. It seems like this same scenario repeats itself every few months and yet, somehow it surprises me every time. I find myself baffled by the lack of noise and the pitter patter of little twerp feet. The sound void alone makes it feel as though all stress has completely vanished and then, yet again, it feels almost empty.

They are gone. They are back in school.

It is the double edged sword of twerpdom.

I find myself sitting down and taking a full, deep breath, basking in the glorious quietude, and endulging in the calm serenity - only to find myself bored by it minutes later - wondering where all of my sweet chaos has gone.

It is like an abusive relationship.

It is like being all full of purpose for no reason.

Tuesday, January 4, 2011

Solid like vaseline

I want to thank everyone for their feedback yesterday. It was very helpful in solidifying my beliefs regarding PET and further scanning. Yes my opinion is solid - solid like Vaseline - but, then again, isn't everything when it comes to these types of decisions. Here is what I have come up with: in this case a PET scan will likely not clarify anything nor will it likely effect her clinically. In fact, it is most likely to simply muddy the waters.

My thought on its utility to provide a baseline is still valid but, now, we have to decide how valuable that is. And, that is an extremely difficult question to answer. Is she MIBG avid? Do you believe that she has relapsed previously?

It is all very nebulous.

The one thing I do know is that the big brains (orthopedic surgeons specializing in oncology) have vetoed biopsying her. Frankly, they think the likelihood of the sample providing anything diagnostic is slim to none. Apparently the spot on her breast plate is extremely hard (literally) to biopsy and samples from that area are generally non diagnostic. Furthermore, given the position and location of the other lesions they felt that they were not worth the risk either.

So, no biopsying. Yeah - I think?!?!

The good news to come out of all of this is that they now have a new "proven" theory on the lesions. The orthopedic surgeon reviewing Sydney’s scans for past 7 years felt that these sclerotic areas likely represented “healing process” of old bony metastasis and is a process seen in other solid tumors and in fact, quite common in women with breast cancer bony metastases. Given this theory it was her opinion that we would likely see more of these as Sydney's body continues to heal.

Good news? You bet! But, don't forget that it is one theory amongst others who will tell you flat out that they believe these lesions to be neuroblastoma. The consensus is still out. There will be more discussions throughout the remainder of this week and we are still awaiting several opinions from around the country. We are on the hunt to find other institutions that have seen similar lesions in their long term survivors.

Regardless, I find these latest opinions comforting. Perhaps a wait and see approach is best.

I can't believe I just said that.

Purpose, lead the way.

Monday, January 3, 2011

A cautious beginning

Well, well, well. Happy New Year! 2011 has arrived and we are ready for a new start. Last year left many questions about our future. We have done everything we could to bring about good karma. We haven't broken any mirrors or walked under any ladders. We have even avoided all black cats. For good measure we have a couple of four leaf clovers and we have been fervently searching for lucky rabbits feet. In fact, the only thing I have not done to prepare for the new year was to eat black eyed peas. Nope. The last time I did that was New Year's Eve before the birth of 2003.

Do the math.

Yes, I guess it is fairly obvious why I don't eat those anymore. While I can't prove that black eyed peas cause neuroblastoma, it is a convenient item on which to place blame. I hated those nasty little things.

Today I will be following up with Sydney's oncologists. The holidays are over and it is time to get back to business. I need a plan. I am still strongly considering a PET scan for Sydney. For some it may seem like an easy decision. However, we have to carefully consider several things. Most importantly are: How would a positive or negative scan effect Sydney's treatment or lack there of. This is a big kicker.

Would a negative scan mean that this was not neuroblastoma? I would tend to think that this finding would give us more confidence that this spot was not neuroblastoma but I don't think it would be conclusive. So, would a negative finding change anything? Probably not.

So, if that is worthless, what would a positive finding on a PET scan mean? Well, again it would not be definitive but it would certainly put a significant scare into us. It would probably even convince us to be more aggressive in biopsying her. The problem with a positive finding is that I doubt it would qualify her for any type of clinical trial. It would not be definitive enough to get her in position to do any real good. Sure, we could start chemo but that would be about it. No MIBG therapy, no oncolytic viruses. Heck she probably would not even qualify for antibody or vaccine. Everything in our arsenal would be off the shelf and I can't see any of it as a long term solution. In this sense, we would be fighting, quickly depleting her marrow, without any real hope of anything to cement another remission.

Where as (and I know this sounds bad) if she relapsed more definitively we would have more weapons in our arsenal and potentially more chance to deal with it effectively. I know, I know, it is a nasty double edged sword.

Yep, from that perspective, a PET may not be that helpful. In my "unexpert" opinion it is a much better tool to follow known disease that it is to diagnose it. And it is this theory that leads to my rationale of why I think a PET might actually be of help for Sydney.

Positive or negative the PET would provide a baseline. It would provide something that we could follow. If it is positive we could follow how quickly it is growing or if the spot is resolving. If it is positive, it may also illuminate other areas of concern. In this case, it does give us something to measure and if it is negative it just might give us a big breath of fresh air.

What are your thoughts?

I know this may not seem like the happiest way to start a New Year but it is what it is. It may turn out that, while the year may begin with caution, it may blossom into our best year yet.

As always, it is one step at a time and one foot in front of the other - with purpose.