Wednesday, June 30, 2010

Dudely Devastated

Oh, it was a tough day for Dudely. Graham fought valiantly but, in the end, he would loose a very good match. Ironically, he lost using the very same kick that assured his victory in the last tournament. Graham took an early lead. He truly dominated the first round. He was moving well. At the first bell he would be leading 2-0. The second round was more balanced. His opponent came out far more aggressively. It was not long before the match was tied up. Twice Graham was scored on while moving in towards his opponent. In short, he left himself open to a couple of quick kicks. They were so quick (and light) that I didn't really even notice them until I reviewed the video. None the less, they scored.

Despite the evenness of the match, Graham still appeared to be the stronger of the two. Graham's next quick was a beautiful kick to the head. Unfortunately, at this tournament, they were not allowed. Instead of earning him 2 points as it did in the last tournament it cost him a point. In his mind that was a 3 point swing. I, too, was a little surprised that they did not give him a warning as that was normal protocol. Graham was devastated and that incident, combined with the limited time on the clock, quickly led to his defeat.

When asked about the head shot he claimed that he did not know - although Master Paul had told him to keep his kicks to the body before the match. Graham was heartbroken and it took several hours for him to recover.

Like I said before, I was not concerned with outcome. I thought Graham fought better than I had ever seen before. I was truly proud. This year he is at the bottom of his age group and next year will be even a better opportunity for him to medal. As I told him, these were the absolute best 6 and 7 year olds from around the country. He did well just to get there.

Today Graham and Sydney both compete in the forms competition. Both of them have a chance to medal. Their forms are strong. However, the will both need to defeat their own demons. Graham will need to get passed his nerves and Sydney will need to defeat her fears as well. It will be a great experience for the both of them. I hope they do well, but again, these are the best of the best. They have their work cut out for them.

On another note, yesterday their were 3 other fighters from GSX on the mats. Gio and Vivian both made it through the preliminaries and both won bronze medals. Late last night Jamelyn won gold. That is at least her second national championship in a row.

Not a bad first day of competition.

The second day will require a mountain of purpose.

Tuesday, June 29, 2010

Junior Olympics - Day 1 Arrives

Last night we had about 30 minutes worth of Tae Kwon Do practice at the convention center which was followed by a pizza party at our condo. Today starts the official competition with Graham leading the way. He will be one of the first to spar this morning. I am keeping my expectations low. After all, he will be fighting the best in the country. However, I also know that if we can coax him out of his shell he has a shot at earning a medal. He just needs to come out hot and ready to win. Competition will be fierce and he will have to face a ton of it if he has any hopes of medaling.

For me, it really doesn't matter how he does today. It has always been about the journey. It has been how hard he has practiced and how hard he has tried. Win or lose, this year has been a success for the Grahamster.

Lynley will be covering the event live via her twitter account.

Purpose awaits.

Monday, June 28, 2010

A Magical (and tiring) Experience

Good morning! Well, the Dungan Walt Disney Expedition has come to a close. We spent 4 complete days touring the parks at Disney. I am quite sure the Dunganlets would love to go back for another day but I think Lynley and I have both reached our limit.

In all we toured 4 parks - the Animal Kingdom, Magic Kingdom, Epcot, and Hollywood Studios. It should come as no surprise that we spent the most time at the Magic Kingdom. In fact, we spent an entire day there from 9:00 AM until about 11:00 PM. If that was not enough, we also spent the better part of 2 other days as well.

Ironically, time spent at a particular park was not necessarily an indication of which parks the kids loved most. When asked what they liked most, the kiddos unanimously chose rides at parks other than the magic kingdom as their favorites. Ranked unanimously as a favorite was Expedition Everest, a roller coaster worth remembering at Animal Kingdom. This was closely followed by Dinosaur which terrified Ainsley in the beginning, but somehow, in retrospect is now embedded in her mind as one of her favorites.

The Twerps loved just about everything at Hollywood Studios and I must be honest and say that it was our favorite as well. While that was probably partially due to the easy accessibility of wine and beer, Lynley and I both enjoyed the experiences as well. The Tower of Terror ranked pretty high. In fact it was ranked as both Lynley and Ainsley's absolute favorite. Graham and Sydney both chickened out on a second run through but Lynley and Ainsley were right back at it. Oddly enough, Ainsley listed the Tower of Terror as her absolute favorite after her first ride and as her "worst" favorite after her second run through. Yet another example of why I have difficulty understanding the females in this family. Regardless, Graham, Sydney, and I took off for the Rock n' Roll Roller coaster which became one of Graham's favorites. The kiddos spent much of the afternoon in the "Honey, I shrunk the kids" Movie Set Adventure. In fact, I am quite sure they would still be in there if we had not lured them out with candy.

The kiddos only spent a little bit of time at Epcot and, therefore, never really got the full effect. The afternoon was poisoned by a mishap on Mission Space and long lines. The food was good but I think everyone had simply met their match. I would love to go there fresh on another day but the kids just never got into it. Other than in Innoventions, nothing was really able to recapture their focus. For that, I was a bit disappointed. Perhaps, they were just tired. I would love to take them back but I think it may be difficult to talk them into it. In the end, they missed some of the best stuff like Soarin' and the Test Track.

As I mentioned earlier, we spent quite a bit of time at Magic Kingdom. We rode just about every single ride. As expected Splash Mountain was a huge hit and they also loved the Big Thunder Mountain Railroad. In all, we had a great time their but I must be honest and say that both Lynley and I had felt that the Magic Kingdom had lost a little of its luster. Maybe we have become spoiled by our Walt Disney Cruise experience but we were both a little disappointed with the quality of some of the cast and the aging park. Many of the rides focused on characters and story lines that the kids had never heard of before. Sure, they were popular when we were little kids but now they just seemed dated. That left the kids with an inability to connect and I think they missed out on much of the awe that we experienced as kiddos. I don't want to get down on Disney. As an experience it is still far superior to Six Flags or any of the other amusement parks we have visited. It just wasn't as good as we have come to expect of Disney. I willCheck Spelling give them kudos in one area though. They have mastered crowd control. I was extremely impressed. They do a great job of entertaining people while they wait and the designs of their rides do an exceptional job of shuffling them through quickly.

In the end, the vacation has been a great success. It was a blast but now it is time to focus on the Junior Olympics. It is time to recover and prepare. Today is weigh in and tomorrow the Olympics begin.

It will be a day of restful refocusing of purpose.

Thursday, June 24, 2010

Radiology Report Amended

Late last night I received a message from Dr. Granger. The tumor board had reviewed Sydney's scans. In the end, they have found that nothing appears concerning.

What, you may ask?

They are claiming that the measurement changes seen are a result of how the CT slices through vertebral bodies. That, of course, makes total sense. However, I am curious as to whether they came to this conclusion based on the 2007, 2009, and 2010 scans or whether they went back further. I must be honest, it would make me feel better if they saw it at the same size back in a 2004 scan.

If that is the case, is this necrotic (dead) original tumor tissue? Also, is the pars defect at L5 related?

So, what could all of this mean?

Well, this could just be dead left over tumor. In which case, we could discuss removing it but I am doubtful I could convince a medical team anywhere to let me do that. It may just become a part of her, a little ball of old dead or differentiated neuroblastoma tumor. That makes me a little more uneasy than previously but I am well aware that, from a risk perspective, it is probably better than the alternative. Of course, there are several ideas and thoughts swimming around in my brain and I will have to let this latest news digest a bit over the next few days before I form too many opinions. I will also need to refresh myself on residual tumor risk.

In the meantime, we are in Orlando at our swanky condo and the magic begins today. Today it is a flip of the coin - Magic Kingdom or Animal Kingdom?

Given Disney traffic and crowd patterns, fun-ness level, and a myriad of other factors it is not an easy decision. Still, I sure like making these types of decisions more.

Whatever I decide there will still be purpose both in the front and the back of my mind today.

Tuesday, June 22, 2010

Not particularly good news

Well, crap!

It would have been really nice to write a post just before we left trumpeting good news from our scans.

That is not what we received.

We met with Dr. Granger today. Before we had even sat down she was already preparing us for the news. She told us that it sounded bad but she really didn't think that it was necessarily so. In fact, she gave every indication that she did not feel that it was neuroblastoma. It was a concern - obviously - but she was not ready to jump to conclusions.

That was how it began.

The official report read:
CT abdomen findings: The liver, gallbladder, pancreas, spleen and right kidney shows no acute findings. There is compensatory hypertrophy of the right kidney and an atrophic appearing left kidney. Surgical changes are noted at the celiac axis. There is fullness to the right retrocrural region. This is best seen on axial image 46. This is nonspecific but could represent residual neoplasm. This measured 12 mm in AP by 19 mm transverse today compared to 9 x 21 mm previously. The aorta has a normal appearance. The bowel has a normal appearance without evidence of obstruction, mass or wall thickening . Pars defects are again noted at L5.
The long and the short of it is that there is something on her CT scan. It is 12mm x 19mm which is pretty small. However, we still have to suspect that it could be residual tumor. There is good news though. Looking at her scans over the last 3 years this mass" has always been there. Over the last 3 or so years it has nearly tripled in size but that is tremendously slow growth (especially for neuroblastoma) and could simply be due to the way the CT slices the images. Better yet, most of the growth appears to have occurred between 2007 and 2009. In other words, it could be simply changes in the scan not in the "fullness"

So today, instead of doing all of those things that I have been supposed to be doing, I have been learning everything I can about neoplasms in the retrocrural region. Unfortunately, that has not made me feel any better. The fact is that this region is a happening place for neuroblastoma and there are few other things it could be. Well, that is not true, there are a lot of other cancers that could cause this but given her history one has to suspect the worst. It could also be an enlarged lymph node. Then again, in this area anything over 6mm is considered suspicious.

Even with all of that, though, there is still some good news. Her MIBG did not light up in this spot. Her MIBG, as I suspected, was perfectly clean. That could indicate that this may not be neuroblastoma. Secondly, and I know I am coming back to this, but it is very slow growing. It could be a ganglioneuroma or something else slow growing and benign. Wouldn't that be awesome? I would suspect neuroblastoma to be far more aggressive. Finally, disease was noted no where else. There were no other enlarged lymph nodes and everything else appeared pretty normal. Whatever this is, it appears to be very localized.

So, we have to take all of this with a grain of salt and not get too panicky. While my first thought is to go in surgically and cut it out, I have to give all of the experts time to weigh in with their opinions. Over the next few days and weeks we will give many the opportunity to weigh in. We will be getting a second opinion on the radiology report and her case will be discussed by the tumor board. Additionally, we will be talking to a few experts around the country to assess their thoughts.

We have the luxury of some time to figure out (a) what this is and (b) what we can do about it.

Still, it was not the news we wanted to hear.

Purpose and prayers - need I say more?

7 years

Yesterday morning I did not look at the date until after I had finished my blog entry. There it read "June 21, 2010". I imagine for most people that date is probably meaningless. For us though, it signifies the worst day of our lives. You see, 7 years ago on that very day Sydney was diagnosed with stage IV neuroblastoma. I can not only remember it vividly but I can also feel it.

In fact, this moment 7 years ago I can tell you exactly what I was doing. I was outside in the garden out in front of Cook's balling my eyes out. I can even remember the conversation that I was having with myself in my head. "Why her?" I remember begging God to take me instead. "Just spare her." She was too pure and too perfect.

Please God, just spare her...

I knew I had to be the big strong Daddy and husband. It was those moments in the morning that were really my only time to do my own grieving. I can still feel the lump in my throat, emptiness in my stomach, and tightness in my jaw. It was a horrible, awful, and all encompassing feeling. I was swallowed by despair. I have never felt worse although I do know that there is one worse feeling - one with more emptiness - and I hope to never feel it.

7 years.

How lucky are we?

How blessed?

Thank you, God, for the privilege of 7 more years.

This morning we go to the clinic and hopefully continue the journey of 7 more years of purpose.

Monday, June 21, 2010

It is all about getting ready

Good morning! Yes, we survived another weekend. Although busy as usual, this one was relatively uneventful. We still have not heard any results from Sydney's scans so we simply acted as though no news was good news. I imagine we will find out everything officially at our clinic appointment tomorrow morning.

Friday night and Saturday were chock full of Tae Kwon Do. This was good as these were the last true hard core practices. Everything from this point on will be relatively benign conditioning. At this point, the goal is to protect the team from injuries so there will be no sparring or contact. We will focus on continuing to build upon their core strength, increasing their stamina, and grinding in the fundamentals. In all, there were only about 5 hours of practice for the little ones plus some drills that we are doing at home. All of the practice was good though as it gave Lynley and I a chance to begin preparing for the upcoming trip. We have a mountain to accomplish before we leave on Wednesday morning.

Sunday was more Father Abuse Day than Father's Day. Once again, we found ourselves needing to get things accomplished before we journeyed to the Olympics. This left me shopping with the 3 kiddos. We went to no less than 8 different stores. Now, don't get me wrong. I love spending time with the kiddos. However, visiting that many stores is no one's idea of fun. All in all, the kiddos were pretty well behaved given that level of torture and, while I can't say it was especially fun, we did have a good time together given the circumstances. Better yet, we actually got about 90% of the stuff we needed.

Only 4 more stores to go. Yippee (please note sarcasm)!

Well I had best be off. As you may guess, there is some work to get out the door in the meantime.

It takes quite a bit of work to get ready for all of this purpose.

Friday, June 18, 2010

Nothing obvious

Good morning! I did not mean to scare anyone yesterday with my non post. I slept poorly and spent much of the late night hours working. I then went back to sleep and the next thing I knew I had enough time for a shower and time to make breakfast for the kids before we made it out the door to an early MIBG appointment. Sydney's scans seemed to go off without a hitch. Most importantly, to her anyway, was the IV placement which we were all happy to see only took a single poke. There was some digging around for a vein and it was in a pretty sensitive area but Sydney, stoic as ever, calmly made it through.

I have not seen the CT scan or received the results so all I can tell you for sure is that she successfully completed it. The MIBG I can speak to a little more. I did not see any obvious areas of disease. The extremities looked clean. Of course, the chest and abdomen where chock full of MIBG. This can be attributed to brown fat and various organs that soak the substance up naturally. However, seeing the screen at the resolution that I am able to view the results, I really can't rule anything out of the abdomen. While I did not see anything obvious, there is the possibility that a tumor could be sitting in the abdomen that I just couldn't make out. But, if you read my diary you have heard me say it every time. The abdomen always looks to me like she is riddled with disease so I try not to pay attention to it and I just await the official report. In short, the MIBG looked about as good as I could have expected but that is certainly not definitive.

So, when do we get the results? Well, in my mind, the fact that we have not already been called bodes well. Given that, we are not the highest priority patient so I would not expect to hear anything until next Tuesday at our clinic visit. Until then we will calmly wait and pray for good results. In the meantime there is plenty to do.

We are preparing for the Olympics after all.

Hopefully the kiddos purpose will distract me a bit from mine.

Wednesday, June 16, 2010

Scan Week begins

Today officially marks the beginning of Sydney's last official follow up scan. After this week we will no longer be following her regularly with scans. For better or worse, she has finally reached the point where the risk of a secondary cancer from the radiation outweighs the value of routine scans for relapse. From now on, the only time she will be scanned is when we have a significant concern of relapse.

This morning Sydney will have a CT scan of her abdomen, chest, head and orbits. She will also be receiving an injection of MIBG for tomorrow's scan. We are to arrive at 8:15 and, if all goes well we should be out of there by about noon.

If you have any extra prayer time today we would sure appreciate some good thoughts flowing in Sydney's direction. Scan week is always a nail biting time and it is intensified this time around with all of her ancillary ailments.

On a separate note, I gutted up and had an x-ray of my foot yesterday. It is official. My toe is broken. Unfortunately, given the location of the fracture, it is prone to being displaced and there was some significant concern that, with all of the walking I would like to be doing at Walt Disney World with the kiddos, that it would become displaced. For this reason, they put me in a fracture boot. Yes, one of those stylish boots doofuses wear when they have been as graceful as I.

I will be strapped into that puppy for a few weeks at the least. The good news is that the curved bottom does a nice job of preventing me from putting weight on my big toe. That goes a long way in reducing the pain. So, although I might not look as cool as I would normally claim, I am very pleased with the comfort. I am hopeful that it will make our trip to the Magical Kingdom a foot pleasing experience and that I will be able to be a part of all that the kids want to do.

Well, I had best be off. It is time to put on my game face and get my purpose in gear.

Tuesday, June 15, 2010

Idiot Big Little Piggy

Can you please tell me why it is necessary for broken toes to hurt so much. So, my big little piggy is an idiot. I was running up the stairs (without shoes) after a thoroughly exhilarating workout. After losing 30 pounds with Insanity (workout program) I am now a buff and ripped almost 40 something. I am in the best shape of my life. I am a well oiled machine.

Running up a set of stairs is no match for me. In fact, the thought of being winded no longer crosses my mind.

I am SuperDad!

Unfortunately, my feet have apparently not seen the increase in dexterity. They are clearly still feeling the ill effects of years of laziness. For some reason, as I was launching my way up the stairs, 4 of the little piggies on my left foot made the correct decision of stepping onto the tread of the next stair. However, the big little piggy thought it would be a good idea to try for the stair below. The next thing my foot knew it had 4 toes going in an upwards direction and 1 stupid toe going in a downward direction. The rest of me was also going in an upwards direction which left the bone in my big little piggy no choice but to snap.

I am not pleased and somewhat whiny.

Now, I am just hoping that my toe heels before our trip to Walt Disney World next week.

It was not the best start to scan week.

I am hoping that it gets better from here. With Sydney continuing to complain about headaches and mysterious ailments, I am pretty nervous.

However, I would gladly take a lifetime of broken toes if it would mean she would get a clean bill of health.

Here is to a week of purposeful purpose.

Monday, June 14, 2010

Scan week begins

Ah, the weekend has come to a close. I would love to tell you that it was completely relaxing. Maybe it was for the kids but, for me, I was once again relegated to the holes in the back yard. Lynley had me back working on the sprinkler system. At this point, you must be either thinking that Lynley is very mean to her loving husband or I am completely incompetent when it comes to plumbing. Why else would it take so long to replace a few sprinkler valves?

Well, in my defense the sprinkler valves are hidden underground all over the hard without any apparent rhyme or reason. So, to make a long story, I had to dig a trench following the low voltage sprinkler lines to actually locate the valves. Does that sound bad? Well, one of them ended up under our driveway. Not to worry though, whatever idiot put it there left me a 4 inch access panel to try to cut out and replace a 5" sprinkler valve.

Feel sorry for me yet?

Eh, don't feel bad, Lynley didn't either. In her defense she told me to hire a sprinkler company to do the work for me. However, I am a tightwad and when the first company gave a bid of over a $1000 I felt like it was worth some significant suffering. After all, I have a trip to Disney to pay for this month.

The kids were helpful. Every once in a while they would get out of the pool to come check on me and complain about how hot it was. There were some signs that we have taught them well though. They were always nice enough to offer to bring me another cup of ice water. Oddly enough, Ainsley would never offer cold water. She would just go into the back fridge and bring me out a cold beer - no matter what time of the day. Had I drank them all I don't think I would have been to see straight enough to put Humpty Dumpty back together again. I had to find a nice way to sneak them back into the fridge without her knowing. But, I must admit that a few got lost along the way - and, no, it wasn't the 3 that she brought me at 7:30 in the morning.

The weekend also brought its fair share of Tae Kwon Do. In all there were 3 practices and an awesome field trip to see the Karate Kid with the team. By the way, I must admit that although I had a fond spot in my heart for the original, this one was better. We all truly enjoyed it.

This week marks the two week countdown to the Junior Olympics and scan week for Sydney. It will be busy and stressful. The fun begins on Wednesday with an MIBG injection, labs, and CT scan.

Well, I had best be off. There is much to be done while I can still concentrate.

Purpose cometh.

Friday, June 11, 2010

Increased pediatric cancer research, the less obvious path

After my post, "Pediatric Cancer Underfunded?", I received quite a bit of email. The most common response was the argument of "life years lost." Here is the philosophy. Years of potential life lost (YPLL) or potential years of life lost (PYLL), is an estimate of the average years a person would have lived if he or she had not died prematurely. It is, therefore, a measure of premature mortality. As a method, it is an alternative to death rates that gives more weight to deaths that occur among younger people. Thus helping to bolster the argument that childhood cancer deserves more funding.

This argument has been used by various proponents of childhood cancer for several years. In fact, I can remember many making this argument back in 2003 when Sydney was diagnosed. Sure, it is an interesting statistic to those that want more pediatric cancer funding. Unfortunately, outside of its use as a byline in a far more comprehensive and to the point argument, it is relatively useless. It is useless because no one uses that statistic as a basis for funding. It is a fun (or not so fun) fact but it has absolutely no weight. Until you convince government and public health agencies to fund projects explicitly directed at preventing premature death, the argument really has no impact. The argument doesn't work and this is illustrated by the lack of increased funding we have seen while this argument has been emplyed as the mainstay.

It isn't convincing anyone - especially those who are of the age where those diseases are most prevalent (i.e. the decision makers) Yes, in order for this to work somebody (with a lot more credibility than a parent of a child with cancer) must show and prove to them that there is more value in funding anything based on life years lost. You have to prove that it will lead to the greatest impact for every dollar. It has to look good on a government report.

Only when that happens will this be an effective argument. Until then it is simply another statistic and we all know that you can make statistics say anything you want them to.

I still maintain that the more realistic path to increasing pediatric funding lies upstream if the NCI. There is pretty good argument for increased funding when you compare cancer research to other diseases such as AIDS (NCI budget $4.8B, Domestic AIDS spending ($20.6B - Cancer impacts 100s of thousands of lives ever year, AIDS affects about 30,000 domestically and the mortality rates are even more convincing) A few well placed political connections could re-right that ship. However, one of the biggest ways we can work within the NCI and other funding groups is by convincing them to change policy. It is unlikely for them to drastically change their funding amounts for pediatric cancer. However, it is much easier to convince them to incentivize researchers to incorporate pediatric cancer targets in their research studies. By doing this, you increase the amount of pediatric research being done, you foster research partnerships and cooperation, and you do it all without the need to change the funding structure.

Sure it is more complicated than simply adding a pediatric cancer research incentive but successes have been seen and the system has been proven to increase work in pediatrics. Now we just need to apply this success in a much larger and grander scale.

This requires some more thought and discussion but I, honestly believe that this is the direction we should be moving if we are hoping to see any real change in the near term. Furthermore, I believe this would be acceptable to the research community and the funding community.

It just makes sense. It is reasonable and rationale and it works for everyone.

I'd love to hear your thoughts.

With purpose, success can be found using the less obvious path.

Thursday, June 10, 2010

Normal Chaos

Good morning! I guess you can already know that I did not write yesterday morning. That had nothing to do with not having anything to say and everything to do with having plenty to say and not nearly enough time in the day to spit it out. Right now, things are in fast forward and over the next few weeks I don't see any slowing down.

I think much of our feeling of extreme busyness has to do with the pre-olympic Tae Kwon Do schedule. Right now, we are practicing every day of the week. On most days though, we are only practicing for an hour or two. With the kiddos out of school that really doesn't seem to be adding that much time to the day. After all, they used to spend far more time than that in school. However, with practices occurring in the evening hours, it isn't replacing the time they were spending in school. It is chipping away at our evenings. With Lynley and I both working full time, it just means less time for us to decompress. Right now there are no relaxing summer evenings in the pool and ad hoc dinners on the grill. It is rush, rush, rush.

From the moment we get home from work it is about getting the kids geared up and planning out when, where, and how we will eat dinner. With those two tasks alone we are rarely finished by the kiddos normal bedtime. In fact, I can't remember a time we were home before 8:00PM. Add onto all of this the fact that we have guests in from out of town and you can begin to see why Lynley and I both are feeling the stress. Actually, it isn't the stress. It is the fact that we really just don't have any down time. On Tuesday night Lynley and I went out on a little mini date after the kiddos went to bed hoping to relax a little. We ended up having too much fun. We staying out too late and the next thing we knew we were already further behind for the next day. We are both hoping that this next week end will bring with it some relaxation.

The good news is that if you forget the stress of feeling like you don't have a moment to breathe we are actually doing pretty spectacularly. Kiddos are happy, nanny Stephanie is in the groove, and Lynley and I are doing great.

There are a few minor stresses though. In time for Sydney's scans we are seeing the usual rise in unexplained anomalies. Her latest ailment is a headache. They come and go but they are more frequent than Lynley and I are comfortable with. She also has had some fairly regular bouts of the hiccups. Take into consideration that this is scan season coupled with the fact that this is June (her diagnosis month) we are pretty skittish. Sure, we can come up with all kinds of excuses for the headaches but we can't get the fear of neuroblastoma out of our the forefront of our minds. Rational or not, it scares us. It is a good thing that scans are next week so we can put these headaches, or at least the fear of them, hopefully to rest.

Graham has an issue as well and we are working through it with him. He is going through a period of crying about everything. This is especially noticeable at Tae Kwon Do practice. He is being very dramatic and he is guilty of overacting with nearly every punch or kick that he receives. It is unlike him and we don't really know what is going on. He has always worn his feelings on his sleeve but it has grown out of control. I am guessing this is some type of call for attention. His sisters do a relatively good job of alienating him many times a day by playing "girl" games. He feels left out and unloved by his sisters. It is amazing how, if I begin spending more quality one-on-one time with him, his injuries become less severe and his emotions on the mat are far more under control.

This all makes me wonder. What should I be doing? How do I help him? How do you grow a great human being?

As usual, no damn manual.

Before I go, I would be remiss without mentioning Ainsley. She is her usual self. She is awesome. Just keep the sugar coming and her entire world is right.

Well, I had best be off. Purpose is already wrestling this morning.

Tuesday, June 8, 2010

Pediatric cancer underfunded?

You have heard me complain on several occasions that childhood cancer funding is woefully inadequate. As of late, I have seen many take these complaints to politicians and various governmental agencies in an effort to secure more funding for our children. They often go in with pictures of bald children (our kiddos) and sad stories. That is followed by the distribution of facts like "childhood cancer is the number one disease killer of US children" and "breast cancer alone receives almost $580 million of research funding from the NCI where as all forms of childhood cancer, all 12 major groups comprising some 50+ childhood cancers, receive less the $190 million - COMBINED." All of this is the capped off with a demand that pediatric cancer deserves more funding.

Facts like that certainly illustrate the problem.

We argue and argue that pediatric cancer is underfunded. However, if you want to be any good at making a difference in funding you have to answer the question of:

"Compared to what?"

From a funding standpoint it is very rational to give breast cancer $680 million and pediatric cancer less that $190 million (as the NCI does). In a patient to patient comparison they are being funded similarly. In fact, in some cases using this methodology, some pediatric cancers are actually funded better than adult cancers like breast.

Furthermore, there are a lot more people that get breast cancer than get childhood cancer and if you want to get the most impact from your dollar then you have to spend your research dollars on projects that are going to affect the largest group of people possible. I mean think about it. Which sounds better on a government report?

A. I spent $1 billion and cured 200,000+ patients per year
B. I spent $1 billion and cured 13,000 patients per year

You see, this is the math that the government uses to fund cancer research. And, really, who can blame them? Who can argue with that logic?

I know depressing. But, if you are going to ever increase funding you have to understand this perspective. You have to develop arguments that take this philosophy into consideration and , most importantly, you have to ask for specific changes that work with the governmental funding equation.

Now, with all this being said, I genuinely believe that there are many ways to work within and around this philosophy. I can't get into them right now but I intend to cover them in the next few days. In the meantime, I want you to consider another target of your frustration.

Instead of complaining about the governmental funding of other cancers, I would like you to consider these facts.

Did you know that cancer killed more children in the US than AIDS, cystic fibrosis, muscular dystrophy, and asthma - COMBINED?

Wow, yes I know.

Now, did you know that the US government sends more money out of the country to support AIDS research and treatment per year than they spend on the entire NCI budget. The NCI's budget was roughly $4.6 billion last year. President Obama’s Fiscal Year (FY) 2011 federal budget request, released on February 1, includes an estimated $27.2 billion for combined domestic and global HIV/AIDS activities. Domestic HIV/AIDS is funded at $20.5 billion and globally at $6.7 billion.

How is the nation's number one killer of children doing now?

That is why purpose is so desperately needed.

Monday, June 7, 2010

A weekend to recover

This is a perfectly good example of a weekend that you need a couple of extra days to recover from.


Sydney did not have a birthday day.  She had a birthday weekend.  It all began on Saturday, the day before her official birthday.  To give you an idea of how busy it was, we began with playing hooky from a Tae Kwon Do tournament.  Yes, I imagine we were probably the only ones on the team not to participate in this latest event.  That was alright though as we had permission from Master Adrian. 

Regardless, we were not there.

We were at home.  Lynley had us in the salt mines scrubbing and cleaning our way out of unimmaculateness and into her realm of acceptability.  You see not only would we have have guests over to her shrine of domestic perfection to celebrate Sydney's birthday but we would also be hosting her parents, Mimi and Papa, for the week in "cabana 1 (the guest house)".  This also meant that there would be groceries to shop for and a significant amount of last minute birthday shopping for Didders (Sydney).  Thankfully DeeDee agreed to entertain the kiddos at her house as I worked on the snappy end of Lynley's whip.

Believe it or not, by late morning we had finished our work and I was back in the good graces of the household dominatrix.  We picked up the kiddos and headed to the airport.

Airport, Panera Bread for lunch, and back home we came.  It was just in time as it would not be long before Sydney's best friends Jillian 1 and Jylian 2 arrive for a night prepubescent jollification.  For those of you counting along that is 5 kiddos and 2 old farts that were now under our care.

The plan for the rest of the weekend was swimming, jewelry making, dinner, movie watching, sleeping, breakfast, water park, present opening, dinner number two and cake.  Not an insurmountable task but also not something that a rational person would elect upon themselves.

The good news is that everything went off in a rather hitchless fashion.  All of the kiddos had a wonderful time and I am pretty sure it was Sydney's best birthday ever.  The kiddos all had a great time at the water park which was a great thing but, if I am being perfectly honest, I can tell you that I was almost entirely underwhelmed by Six Flags Hurricane Harbor.  I was extremely disappointed by the quality of the park and lack of training with the staff.  From food service to the the life guards, I was disappointed.  It was as if this was the first day the water park had ever been opened (not this year, in all of history) and nobody had any experience in running a water park.

After spending time at places like NRH20 and Great Wolf Lodge I guess I have been spoiled.  Yes, those places may have adequate service and mediocre food but they were 5 star establishments compared to Hurricane Harbor.  And the quality of the rides, I was thoroughly disappointed.  The kids, Lynley and I all preferred NRH20 or Great Wolf Lodge hands down.  In fact, I would gladly play five times the ticket price at one of those places than go back to Hurricane Harbor.


But, the important part is that ultimately the kids had fun. Well that, and thanks to our supervision (no one else's for sure) they all survived.

By 4:00 we were all on our way home.  A pretty good time must have been had as we lost two of the kiddos to sleep on the way home.  That was followed by packing and rides home.  We then topped the evening off with a family birthday party at home complete with Sydney's favorite home made spaghetti.

We went to bed early.  Go figure.

Now I need a day or two to recharge my purpose batteries.

Friday, June 4, 2010

Can sneaky good defeat sneaky bad?

Day two of Nanny Stephanie's reign is complete. Once again, she made it through relatively unharmed. Today it became even more clear that she has some twerp management skills.

The force is strong with this one.

Her experience as a kindergarten and first grade teacher over the last few years has prepared her well for the Jedi mind tricks she will most likely encounter in our alien world.

You see, my kids are sneaky. They are smart enough to never start out with blatant badness. They know that would never work. They lull you into bad behavior. It seems as that you have remained in control the whole time but eventually you find yourself realizing that you never had it at all. One moment you are happily watching over 3 delightful kiddos. Over time, though, you find yourself believing you are in charge and that not that much has changed but you can no longer think clearly for the noise and the kiddos are running amuck.

It is amazing how they do that. It is magical misbehavior.

It isn't that I think that my kids are especially bad. In fact, I think they are the opposite. However, I also know that they have an incredible talent for mayhem. In some ways, I fear for anyone entrusted to their care.

In this case, though, I am delightfully surprised. Miss Stephanie knows. It is clear that she has seen this all before and she has some mind tricks of her own. There were a couple of well placed time outs yesterday and the volume was well managed. She can clearly handle Graham and Ainsley. Sydney on the other hand is still befriending her. My eldest has not shown her dark side and I am interested to see how it is handled. If it is anything like the calm and decisive action that Miss Stephanie has handled Doofus and Doofus-er, I think she will fair well.

In fact, I may even learn a few tricks.

This is going well.

Ah, and don't forget. On Sunday, Sydney celebrates her 9th birthday.

Pretty, amazing huh. She has now officially had more life out of treatment for neuroblastoma than she had in it.

Yet, that took until the age of 9.

I must refocus my purpose.

Thursday, June 3, 2010

Still a shiny penny

Ainsley's destapling went off with out a hitch. In fact, we were in and out of Cook's ER in less than 10 minutes. Although there was a modicum of hair pulling when the staples were removed it was relatively painless. Even Ainsley felt that the hair pulling was less than a typical morning of hair brushing.

There wasn't much time to lolly gag and celebrate though. We had to rush home and eagerly await the arrival of Miss Stephanie, the newest nanny addition. The first day with Nanny Stephanie went perfectly smoothly. Graham was a bit whiny from his perceived girl abuse but I think it was probably just due to the significant estrogen imbalance in the home. Regardless, all had a pretty good day.

There were no incidents. However, I am curious to see how long that will last. It is kind of like the sheen on a new penny. Once it receives a little wear the shine goes away and the blemishes start to show. Twerps work exactly the same way.

The good news is that I will be around the house today so I ought to be able to keep a relatively good eye on the whole situation.

We will see what today brings.

Purpose awaits.

Wednesday, June 2, 2010

The Destapling

Well, even though it is summer today packs a ton of excitement. Today Ainsley has the staples removed from her head. I know, I know. The fun and excitement sure flew by quickly didn't it? She is pretty worried about the whole ordeal. Everyone has tried to reassure her that there would not be pain associated with the removal of her staples but it is about all she can talk about. Thank goodness we will be having it done first thing this morning so that she does not worry about it the remainder of the day. Like I said, it should be quick and harmless. We are hoping to be out of there by about 8:30 AM.

Today also marks the first day of Miss Stephanie, our new nanny. By school year she is a kindergarten teacher so she knows exactly how to care for (and discipline) our kiddos. We met with her last week and the kiddos absolutely fell in love with her. Sydney is extremely excited. I expect to day to go smoothly but I know there will be some bumps in the road. The first few days of any transition are tough and I know it will be that way as they learn her new rules. None the less, I am not expecting this to be too difficult.

Well, I had best be on the go. I have a morning full of Ainsley purpose followed by a meeting in Dallas full of childhood cancer purpose.

Tuesday, June 1, 2010

Summer has arrived

As of Friday, all of the kiddos have officially entered summer. Ainsley is now an official kindergartner, Graham is now in the first grade, and Sydney is the twerp elder entering third.

Who would have thought?

It is also important to note that all of the kiddos have also received their report cards. Ainsley's performance is still a complete unknown. I am afraid we will have to wait until next year to find out where she truly stands. We have not heard a peep since her mid year review in which she base lined every evaluable measure according to her teacher. All I can tell you for sure is that she was accepted to kindergarten and that, when compared to my other kiddos at the same age, she seems significantly ahead of where they were. Ainsley does receive some special bonus points too. She made it through an entire year without receiving a single yellow sticker. That is a sign of tremendously good behavior and a feat that her older siblings never came near. For comparisons sake, both Graham and Ainsley earned about 5 to 10 yellow stickers during their pre-k tenure.

Now, I know nobody saw that coming.

Graham does not receive grades per se. He receives check marks. Either he learned the evaluable skills or he did not. I am happy to report that he is chock full of check marks. He seems to have mastered all that was required of kindergarten. This summer we will be working on reading to help create a love for books. We will reward him with math as, like his Dad, this is what he loves the most. For those of you wondering how this generation compares to my own. I was officially taught multiplication in the third grade. Sydney was taught in the 2nd grade. With teacher Sydney, Graham and Ainsley have already been schooled. Yes, believe it or not, both Ainsley and Graham are learning the multiplication tables - and with success too.

Sydney received straight As. This little feat earned her a spot on the all A honor roll for an entire year. I think this is quite a feat and I am tremendously proud. Honestly, flashback 7 years ago and we did not even know if today would be a reality, much less the fact that she is a straight A student and a junior Olympic caliber athlete in Tae Kwon Do.

That is a far cry from stage IV neuroblastoma with roughly a 15 to 25% chance to survive 2 years.

To say that I am thankful is a gross understatement.

Sydney is already pretty hard in the books for 3rd grade. She has been practicing her cursive (a 3rd grade achievement) which she absolutely loves and we will be working with her to further establish her love of reading. Opposite of Graham, she will be punished with math. Thankfully, she is a great reader and we hope to nurture that as a lifelong passion.

That leaves us with the rest of summer and the opening of the Dungan pool. Our doors opened on Saturday morning.

I think the kids are still in the pool.

I had better go check.

As you can see, the summer will be full of purpose too.