Tuesday, June 30, 2009

A Different Take on Induction

Yesterday there was a discussion on one of the list services in which I participate in which I found myself at odds with one of the common opinions held by other parents and I thought worthwhile to explore it here. After all, I have never seen my opinion expressed by others and, yet, I truly believe that it is a worthwhile strategy. The topic came from a father of a child that was recently diagnosed. His question was age old but one that seems to have gotten more play as of late. Essentially it comes down to this:

Is my child's oncologist leading us down the right path? He said survival was X% but I heard it was higher at Sloan Kettering. Should we go to Sloan Kettering?

There are a bunch of arguments that people use to argue that Sloan Kettering is a better than anywhere else in the world. Unfortunately, most of these arguments do not hold water and, in actuality, just show a complete misunderstanding of statistics rather than any clear benefit. Now, I say this as someone who had a child that had part of their treatment at Sloan Kettering. I say this as a father who believes that Sloan Kettering is one of the reasons that my daughter is still here. And, I say this as someone who has tremendous respect for the team at Sloan Kettering. My goal here is not to bash Sloan Kettering but rather to shed light on some of the reality.

Over the years, I have written volumes on the statistical differences between how COG trials and Sloan Kettering trials are reported. For that reason, I will not repeat it again here. The fact remains that they use different measuring sticks. It is not right or wrong. They are just different and can't be compared. Until Sloan Kettering has a randomized phase 3 trial that uses event free survival as a measuring stick it will never be comparable. This difference in statistics is not to be taken lightly. Today, even a difference by as much as 20% (made up number) or more in survival between Sloan and the COG is meaningless. It is apples and oranges. That is, of course, assuming that the survival statistic at Sloan is higher which, frankly, I do not know to be true any longer. Furthermore, the opposite does not hold true. Regardless, at this point in time, making a decision based on these numbers is just as likely to lead you to make a bad decision as a good one.

That is of course, unless you understand them and understand exactly what they are saying and what they are not.

Bottom-line, there is no right answer. There is no definitive proof that treatment at Sloan Kettering is any better than any standard COG protocol that grants you access to antibody therapy (or vice versa). Do not feel guilty because you do not want to separate your family by traveling back and forth across the country. Do not feel guilty that you can not afford to travel for treatment. Sloan Kettering is a tremendous neuroblastoma center but it is not the answer for everyone. There is no magic elixir.

With all of that being said, there are some interesting facts that are worth investigating. Now, before we begin, throw the survival statistics in the trash. Let's talk response statistics. This is that same mantra that I have been chanting for years. Until you have definitive comparable proof you must make educated decisions based on what you do have. Response statistics we do have.

One of the incredibly interesting statistics that comes out of Sloan is their response rate to induction (all of the treatment prior to transplant). It is significantly higher than the response rates that we have seen in the COG. In other words, more kids that are treated at Sloan Kettering achieve a complete response (CR) or very good partial response (VGPR) than they do elsewhere. With that being said I would not be performing my due diligence if I did not also point out that there may be patient selection bias at play in their response statistics or a myriad of other factors that can cause results from a single instution to be skewed. However, for the sake of this argument, let's just assume it is a reality.

Why would the response to induction be higher at Sloan Kettering?

For years it has been assumed that it was the dose intensive induction chemotherapy that made the difference. After all, much of the induction regimen that the world follows (except for Europe) is based off of the successes that were seen at Sloan Kettering. However, after the thorough beating of this pony from all over the world, nobody has been able to recreate their success. In fact, even Sloan Kettering has backed off of the amount of chemotherapy that they administer. Yet, it is interesting to note, it does not appear that their response rates have necessarily changed for the worse. Given that, it probably isn't the dose intensity.

Is the difference because of the way they administer the chemo? After all, Dr. Kushner is a brilliant chemotherapeutist (is that a word?) He is aggressive. He insures the chemo gets in and does its job. Is that the answer? Maybe, partially. But, if I am being honest, that is not the major difference I see.

Is the difference in the dosage or amount? While this could be true, it is doubtful. They are very similar and no one has even come close to reproducing the results. There must be another factor.

My belief is that the higher response rates lie in the hands of the surgeon. Hence, the reason, I wrote the First Unwritten Rule to Neuroblastoma Treatment. If you follow the literature, Sloan Kettering has a significantly higher complete resection rate. And, if you are completely removing more tumors you are going to have more complete responses and very good partial responses. There are other theoretical arguments as well. For example, they also resect the tumors much earlier. Perhaps this also adds a slight advantage. Does it? Well, clearly this effects response rates but, keep in mind, we still don't know it's impact on survival. The answer isn't out there - yet.

It looks like I have spent quite a bit of time tearing down Sloan Kettering only to make an argument that everyone should go there for induction. Don't make your travel plans just yet. Even given all of this interesting response evidence, that still is not the decision I, personally, would make and this comes to the real reason that I wrote this article in the first place.

I have a difference of opinion.

But unfortunately, no more room to discuss it today. So, with that, I will begin tomorrow where I tried to begin today.

Trust me, these ramblings do have purpose.

Monday, June 29, 2009

Defeating Black Belts

Okay, so, we survived our first family Tae Kwon Do class. However, we did not do so without incident. Lynley is the proud owner of a broken toe and I added a running face plant to my repertoire of slick moves. Outside of these two low lights, though, it was fun - incredibly exhausting, but tremendously fun.

Furthermore, Lynley would tell you that I was not living up to my usual grandstanding ways, if I did not tell you that I defeated 3 black belts on my first day. Yep, fear me. I am not playing games. I have skills. Now, I should probably tell you that I did not defeat them in any sparring activities. Come on, these were Olympians. These are some of the top athletes in the world.

No, sparring was not how I beat them.

However, I did beat them in the obstacle course. You have seen Kung fu Panda? You have seen the obstacle course with swinging weapons and fire blasts. Yes? Well this was nothing like that. Ours was with kicking targets and orange cones. But, trust me, the threat was there. Anyway, it was our job to hop over, crawl under, run, jump, kick and punch our way through an obstacle course. On the first course, I lost. But, I only lost by one. I defeated the other two black belts. On the second race, I tied. However, I won the second heat by blowing my opponent out of the water by a full second. Yes, I was the master. Strong as bull, quick as fox.

Lynley would probably also want me to point out that the black belts were also about 8 years old. Technically my competition was two middle aged women, my 5 year old son the yellow belt, and three 8 year olds.

But still, I dominated.

Did you every watch the Seinfeld episode where Kramer took up karate but was participating in the children's classes? He very correctly pointed out that age made no difference. It was all based on skill. Well, we know I have no skills.

Additionally, I would also like to point out that I would never, ever want to fight any of those boys. All of which are going to compete at the U.S. Junior Olympics this week in Austin, TX. They are incredibly talented and I am quite sure that they could decimate me with both hands tied behind their backs. In fact, before class I was watching one of them kick a target that was approximately 7 feet up in the air. Think about that - an eight year old kicking a target that is 7 foot in the air. I would have thought it impossible until I saw it and even now I am still skeptical as to whether my eyes deceived me.

I wish them the best of luck this week and, although I can't wait to see them again and congratulate them on what I know will be a successful Junior Olympics, I am really not looking forward to a rematch.

I got lucky.

This is one area where they have more purpose than I.

Friday, June 26, 2009

Yellow Beltitis

Good morning! Well, in the twerplets plot to take over the Dungan household they have finally taken another step up the ladder. We now have 2 very official yellow belts in Tae Kwon Do. Oh sure, this is great news for them. This is such a great accomplishment. (please note some sarcasm that does not translate into written form) They are well on their way to becoming lethal weapons. Sure, it is great exercise. It increases concentration and it is a great character building exercise. But, did anyone think of Lynley and I? Now that I am starting to think about it maybe this was not such a good idea. We are fueling their eventual takeover.

Yes, it is a time for a change of strategy. Mom and Dad can't be left out in the cold with their flabby bodies and cloudy minds. Tonight, Lynley and I will be attending the family class for the first time. No, for a change we will not be part of the peanut gallery. We will be participants. Watch out kids. We don't give up that easily.

While I don't expect Lynley and I to necessarily become black belts we figured that this would be an excellent way for us to participate. Additionally, both Lynley and I could use the exercise. So, yes, tonight Mom and Dad start on their Tae Kwon Do journey of mastery as white belts. It won't be long before we are able to retake physical control.

Parents can have Tae Kwon Do purpose as well.

Thursday, June 25, 2009

Do you know how much private school costs?

Oh, ha ha. Another child? Are you out of your mind? For the 15 or so of you that suggested that, well, no offense, but you really should be shot. I will also tell you this. You are very lucky. I have not shared your emails or your messages on Facebook with Lynley. She has no idea that we are having this little discussion. I would have mentioned it to her. But frankly, I did not want to be hit. Even hinting at this suggestion with Lynley is a very dangerous proposition. In fact, if you really, really want to piss her off (sorry for he language Grammie), suggest having twins or triplets.

Yep, I know all of the buttons to make her mad and this is one of them. Why do you think I end up doing so much working in the back yard under the deck? That is the Dungan version of the dog house.

Regardless, for your benefit and safety. I am going to keep these little emails between you and I.

We have enough purpose - don't you think?

Wednesday, June 24, 2009

The Dudester Revisited

First off, thank you for all of the email. It seemed to be equally divided between people that wanted to make sure that I shared my diary with my children when they are older and another group who provided me a myriad of examples of boys like Graham that turned out to be tremendous people. I appreciate both sentiments.

First, there are 3 reasons I write in this diary everyday. One of them, is for my children. There are literally hundreds of reasons why I want them to read this but none is more important than the fact that I want them to know that they are loved. They are - tremendously. I guess I also can't write off another important goal which is to let them know what superb twerps they really are. Okay, all joking aside, I make no claims of being a perfect parent or making all of the right decisions. I think that is life. I think that a major thing that they can learn from this exercise is that we aren't perfect but that we keep trying. We keep our eye on the ball. We keep pushing to do our best everyday. We clearly do that in parenting and I hope they can see that in my diary. When they grow up and have their own children and we get the privilege of telling them that they got exactly what they deserved they will be able to go back and see that, yes, they got exactly what they deserved.

The other point that was made in the email I received was that kids like Graham (abused by girlishness) still turn out to be great people. Of this I have no doubt. My concern is not that Graham will turn out to be anything less than I know him to be. In fact, I am quite confident of one thing. Graham will grow up to be a superb human being. There is no doubt in my mind. It is the one thing in life that I am sure of. I don't know any other way to say it than he has a tremendous soul. I admire him for that. Yes, my son - the 5 year old. My concern from Graham has nothing to do with what or who he will grow up to be. My concern is of the challenges that he will face getting there. Our first instinct as parents is to protect our children. I don't want to see him made fun of or taunted. And, if he is going to be, I want to arm him the tools to handle it. Those are my concerns and wishes - not that he will be any less than I know he will be. Mark my words. Graham is going to change the world. I don't know how or when but just wait and see.

Well, enough bragging about my little Dudely. If I keep this up I will never hear the end of it from the Divas. I just want him to know what I truly think. I can't wait to see what he becomes.

The boy has purpose.

Tuesday, June 23, 2009

Manning Up

To a certain extent, the Grahamster has grown up as a second class citizen. Don't feel too sorry for him. His Dad is in the same boat. You see, we are outnumbered. There are a lot of divas in our midst telling us what to do. The difference between Graham and I is that I know I have a choice. I don't really think he does. He is so incredibly kind and sweet (I mean that too.) I don't know that I have ever met another little boy who is so incredibly considerate. While this is a tremendous trait that I am incredibly proud of it also opens him up to vulnerabilities and allows others (namely his sisters) to run all over him. You see Graham is surrounded by girls. He is surrounded by their stuff, their games, and their play. On top of that he is outnumbered 2 to 1. He rarely gets his way and is almost always left with the choice of playing by himself or playing some "girly" game. Being a social creature he almost always ends up playing their games.

Now, I am not trying to be sexist. I am not a homophobe. Our concerns for Graham come on the playground from school and from the public. We don't want them to make fun of him because he is excellent at playing girly games. We have feared that if he continues to be dominated by his sisters who take advantage of his sweet demeanor that he will never get his way and never have the opportunity to develop as any boy or girl should.

Begin the era of manning up.

Over the last week Lynley and I have made a concerted effort to begin the transformation. We have poisoned the princess playroom with macho boy toys. We have stepped in to level the playing field. There are Star Wars legos and cars that now take their place with equal importance as do the nail polish and stuffed animals. We have also began playing up being a boy and what that means. He and I now have a boy pirate boat out in the pool and we defend it with valor. (It still remains about the only place at the house which has not been tainted by girlishness.) This weekend we even had one of his friends over for a play date to even the out the playing field.

It has been good for him. Without prodding, the girls have even began to play with some of his "boy" toys. It isn't everything. It has not been a complete transformation. But we are getting there. Are we right or wrong with how we are attacking this issue? Who knows. The basic point is that Graham is getting his own identity and that I think is the key issue. He is no longer just Sydney and Ainsley's brother.

He is Graham - the only boy.

It gives him a purpose. As you know, everyone needs one.

Monday, June 22, 2009

An extra special Father's Day

Yesterday was Father's Day. Of course, you probably knew that. If you did not, there is probably a father somewhere wondering why he did not hear from you. In that case, you can thank me for the belated reminder. For those of you that new it was Father's Day, I am wondering if you knew why mine was so much more special than most. Do you? Think back.

You see yesterday was one of "those" anniversaries. It is probably a date that only a mother or a father would remember. June 21, 2003 was the day that Sydney was diagnosed with stage IV neuroblastoma. In some sense, that is the day our lives truly began. I can assure you that since that day Father's day has taken on an entirely new meaning for me. Each year June 21st is a reminder of how important my children are and a hard nudge that I should never, ever take them for granted.

It is hard to believe it, isn't it? 6 years! It has been 6 years since Sydney was diagnosed with neuroblastoma. Looking back I can always remember wishing and praying that a day like today would come. I am so thankful.

This is what Father's Day is about.

My purpii.

Friday, June 19, 2009

Labor and response rates

Is it really Friday already? That is great , especially considering that this weekend means another Father's Day for me. Do you think Lynley has grown tired of me pointing that out? I assure you she has bu,t she has come to expect that of me. I have so few times that I win that she knows I have to take full advantage of my opportunities. This of course, before she relegates me to the space under the deck again. It will be a fairly relaxing weekend. The kiddos have Tae Kwon Do sparring class tonight. This weekend Lynley has already begun to line out the work in the back yard. I have a few old fences to remove and a few new ones to repair. There are no specific kiddo activities which suits me just fine. That means a lazy time around the pool - for them, of course. Remember, they are management. I am labor.

I also wanted to quickly acknowledge one of the comments that I received earlier in the week regarding Fenretinide response rates. You may notice. I did not mention any. As most of you know that have listened to me discuss phase 1 trials at infinitem - I think they are misleading. There are too many variables that factor into a response rate in a phase 1 trial. It never comes down to one number and it absolutely CAN NOT give you any indication of activity without knowing the dose levels, the timing of responses, the disease burden of the patients, their disease characteristics, or a myriad of other factors. I bring this up because someone was trying to turn the responses I gave into a response rate. You can't do that and make it meaningful. First, I was discussing complete responses - not partial responses, not mixed responses, not slight movements in HVA/VMA. By the way, it is these COMPLETE response that I find to be so amazing about this trial. I did not expect that. Second, I was commenting on data that was only looking at a subset of patients on the trial - not all patients. The data in the abstract only really alluded to patients in dose levels 4 through 8 - dose levels high enough to achieve clinical activity. There is actually much more information of interest that was not in the short abstract. This drug has good activity and very low toxicity - even at higher levels - but the problem remains. How do we get enough of it into patients to really achieve the results we are looking for? Even with this formulation we eventually ran into issues - not with the drug - but with the carrier. Mark my words. Fenretinide has not only shown good activity but it can be much, much better. You just wait and see.

There is purpose behind those words.

Wednesday, June 17, 2009

Father's Day Fake Out

Last weekend was fun. Of course, I already mentioned the great success of my little Tae Kwon Doers. Well, it was fun when I wasn't relegated to the salt mines under the deck. Yes, hard labor. I was in charge of the deck joist moving team. This was the group of family laborers who were responsible for cutting a larger whole in the deck to accommodate an ever expanding oak tree. Of course, this also meant removing two joists and replacing them a little further apart. I should point out this team was made up of me, myself, and I. The rest of my team - including my blushing bride - were in the pool managing the project from a safe distance. Not fair.

It was not all bad, though. You see, on Sunday morning, my wife and kiddos let me sleep in late. In fact, there were presents waiting for me when I opened my eyes. I woke up comfortably and even had coffee delivered to my bedside. Later, a 4 course breakfast would be made. Better yet, for a change, I was not in charge of this weekend morning cooking extravaganza. To top all of this off, I didn't even half to clean up. My sweet honey told me to just go into the den and do whatever I like. This was my day.

At some point, I realized I was going to have to break the news to them that Father's Day was not in fact last weekend and instead this coming weekend. However, as punishment for my relegation to the crawlspace under the deck the day before, I figured that at least some of this was just desserts.

By noon, I had come clean.

We all had a great laugh. I did let them know that I appreciated all of the presents but that I would expect new ones next weekend. After all, I am a pretty good dad, even if I say so myself, and I deserve better than used presents.

Sometimes purpose comes in the form of payback.

Tuesday, June 16, 2009

Fenretinide (4-HPR) Complete Responses

The 2009 ASCO Annual Meeting was at the beginning of June this year and there were some relatively exciting findings. The great thing about the ASCO meetings is that they publish their meetings online and often you can even find video and/or audio of many of the oral and keynote presentations. There were a couple of interesting findings to come out of the world of neuroblastoma research at this year's meeting. Most notable, of course, was the reporting of the phase 3 study results of the ch 14.18 antibody that I have talked about so much before. However, there were some other exciting findings as well. One finding that I was happy to see published out there in the real world where everyone could see it was the result of the Phase 1 study of Fenretinide (4-HPR) oral powder in patients with recurrent and/or resistant neuroblastoma.

If I am being honest, I actually feel a tinge of vindication concerning these results. For years, I have told other parents about the low toxicity and promise of this drug. Sadly, several other parents who did not understand the nature of phase 1 trials actively lobbied against this trial and drug. Many times they went as far as to tell other parents not to let their child participate in this trial. While their comments certainly had the effect of slowing down the trial, decreasing participation, and probably costing some kids a good chance at response; it did finally close. I am even happier to see the amount of complete responses. I often explained that the major challenge with this drug was getting enough of it into kiddos. There were many barriers. However, new formulations, such as this one, held much promise. In the end, this trial produced 4 complete responses out of 15 patients for dose levels 4 through 8. The other important thing to note is that the patients that responded all responded once the drug was able to get to efficacious dose levels - yes, the very nature of a phase 1 trial.

So 4 out of 15 in a phase 1 trial is an incredible response. Keep in mind, I said COMPLETE responses - not partial , not mixed, but genuine complete responses in neuroblastoma. This is better than many drugs that I have seen in a long time. However, it is not time to run out and fill your child up with 4-HPR. Like any other drug their are types of disease that it works best on and types of disease in which it is virtually useless. Furthermore, it is not very good for progressive disease. However, it is good for marrow disease and, to a lesser extent bony disease. Finally, it is still only available to patients with relapsed disease. So, if you fit these criteria it is certainly an option that you should be discussing with your physician, or bettter yet a neuroblastoma medical expert.

The abstract about this trial can be found here:

Sometimes purpose can really feel validating.

Monday, June 15, 2009

Gold Medal Winners

Good morning! Well, the Dungan Five had a very busy weekend. It all started on Saturday with the Second Annual Global Sports Extreme Tae Kwon Do Tournament. This would be Graham and Sydney's first Tae Kwon Do tournament and I can tell you that the nerves were frazzled early Saturday morning. No, not the kids nerves. Ours! They were fine. I guess to them it was just another day of sibling violence. For us, though, it was another giant leap for twerphood.

Would Sydney keep it together?

Would Graham survive?

Well, as you can tell from the pictures below the kids did absolutely fabulously.

While you can't tell from the pictures, Graham and Sydney both won four medals. They both won gold in their forms. Forms are essentially choreographed and memorized fights. They both had to go through a series of kicks, punches, and blocks. They both performed them perfectly. It is also worth noting that they also achieved silver medals in the synchronized forms. I.e. they both performed their forms together. They did an excellent job but lost out to a mother/son team who were both blue/red belts and extremely talented.

Their third medal was a participation medal that they earned for successfully breaking a block of wood. That is the reason they are holding the broken pieces of wood up in the pictures. Believe it or not, the wood is almost 1/2 inch thick - pretty impressive if you ask me. I was a little skeptical that they would be able to do it but, low and behold, they both snapped them right in half with their fists.

Their final medals were in sparring. While they have both practiced a bit in class this was their first official fight. It took a while for them to get used to how the scoring worked (us too!). However, they learned quickly. Unfortunately, they both lost their first bouts. This was not surprising as they both fought children and/or siblings of two of the instructors. These were kiddos that were schooled in competition and often traveling with GSX's junior Olympic team. They new the ropes and exactly what to do. None the less, both Graham and Ainsley stayed in the frey. Their next bouts were much better. Graham did an excellent job - obliterating his opponent. Sydney had a little more difficulty. She was fighting someone that had 2 degrees of belts above her. None the less she fought valiantly. The final score was huge, 30 to 30 - an enormous score in sparring. That means they both individually landed 30 unanswered punches or kicks on their opponent. The match was settled by a sudden death first point match. The kicks landed almost simultaneously. Unfortunately, the match was given to Sydney's opponent. However, I can tell you that she actually won. Unfortunately, the judges on the other side of the ring just didn't see it and we only had one judge on our side. In the end, Sydney won a bronze and Graham won a silver medal. Regardless, I could not have been more proud of our champions.

It was one giant leap of character. This was great for both of them.

It was a purpose building exercise.

Thursday, June 11, 2009

What do you wish you knew about neuroblastoma?

As of late, I have been trying to identify some of the most common questions of parents of children with neuroblastoma. I am working on putting together an online video series which attempts to not only cover some of the more common questions but also addresses some of the most important decision points throughout high risk therapy. There are clearly unwritten rules that need to be considered and I am continually surprised by some of the questionable advice (if not in complete contradiction to what is known by the experts) that has been given by both the medical community and other parties. There has got to be a way to reach these families and I am hoping that a series of online videos through Google, YouTube and other social media outlets may reach these families.

Over the years, I have written about many of these issues. However, most of which is mixed within the volumes of my daily dribble. There has got to be a better way to get reliable and medically reviewed information out there for parents. The answers to these questions need to be amongst the first things people find when they search a topic on the Internet. By capturing these facts on media and coupling it with with written articles in a more appropriate setting than my diary I am hopeful that we may be able to help many other families.

So, where am I going with this?

Well, I need your help. I want you to think back, sideways, or straight ahead and help me develop a list of all of the things that you wish you would have known when you began your family's journey? What are the things you wish you knew? What would you tell another family that just stepped into the world of neuroblastoma? What would you tell someone that was getting ready for their first rounds of chemo? What would you tell them about surgery, about transplant, about radiation, about Accutane, about immunotherapy? What do they need to know about relapse? What do they need to know about clinical trials?

Please feel free to leave your suggestions as comments to this entry or to email them to mdungan@edocendo.com. I want to get as many suggestions as possible. I certainly don't know all of the answers. I don't even know all of the questions. However, I am going to take these suggestions, combine them with facts from the medical experts and then use them as the basis for this video series.

Thanks in advance.

This is important purpose!

Wednesday, June 10, 2009

The trials and tribulations of turning 8

Good morning! Well, there is good news and bad news about turning 8 and having neuroblastoma. Of course, there is the obvious - you have survived - you are 8. In the land of stage IV neuroblastoma that is quite an accomplishment. So, before I get into the bad, let's not forget that little nugget of supreme awesomeness.

The bad of turning 8 when you have had high risk neuroblastoma is that you have probably had a transplant. This, of course, probably means that you are well behind on your immunizations. Bottom-line, this means that when all of your other 8 year old friends are happily going to the doctor for check-ups and physicals, you are, instead, getting five immunizations.

Sydney was not the least bit happy.

In fact, she is not yet quite of the age to describe how she felt about this predicament so you will have to bear with me as I provide some descriptive words to describe her feelings on this subject.

It sucked!

Regardless, I am happy to say that Sydney is quickly approaching the end of her re-immunizations. In fact, in 6 months, she will receive the final 2 that will get her caught up. I am happy to report that all else went fine. Her eyesight, surprisingly (given her parents) was perfect. Her hearing went untested - go figure! Let's just suffice it to say that she would have failed, but, that was not new news to us. Her growth chart continues to track right along. She is in the 10th percentile in height and closer to the 25th percentile in weight. At first glance this may seem bad but in actuality it is pretty good. She has always been on the small side. So, the fact that she is not losing ground is the important point. Her growth rate continues to be normal. She is neither growing too slow or too fast.

Will she ultimately catch up at some point? Who knows? But again, the important distinction is that even after all that she has been through (almost 4 years of therapy) she seems to be growing at a normal pace. That is good news.

I am sure Sydney would like me to reiterate the fact that re-immunizations "suck."

With that, I am back to purpose - with a fervor!

Tuesday, June 9, 2009

A sign from Sydney

A couple of times a week I scour the medical journals for neuroblastoma articles of interest. It is a habit I got into that is just about as reliable as me writing in my diary. It is a great exercise and their isn't a day of reading that I don't find at least one or two articles worth reading. You should know, that is about my limit though. Of the 50 to 100 abstracts I peruse most of the research is too early to be on my radar. As I have mentioned before, there are thousands of things that can kill neuroblastoma in a petrie dish. The problem is picking the winners - of these 1000s of drugs ultimately only 1 or 2 of them may truly be of value to kids. This points to the importance of preclinical research. We need to pick the winners while research is cheap. Once the research is moved into the clinic it becomes far more expensive and time consuming.

Regardless, I am off the point.

In this morning's scouring I found a great article from, of all places, Sydney, Australia. It is a subject that I am quite passionate about considering my own Sydney. The article, "Hypercalcemia and osteoblastic lesions induced by 13-cis-retinoic acid (Accutane) mimicking relapsed neuroblastoma." This is the first published article which deals with the lesions that have appeared on Sydney. This article is about a boy from Australia that had similar treatment to Sydney. Most importantly, he had both antibody therapy (ch14.18) and Accutane. Similar to Sydney he developed lesions after treatment. While these lesions appeared like relapsed neuroblastoma they were, in fact, not. One of the key signs here was that he was positive by bone scan and negative my MIBG - just like Sydney.

I tell you this for two reasons. First, if you run into this situation there is reason for hope that it may not be neuroblastoma and second that you proceed cautiously. After all, we put Sydney through 2 additional years of therapy based on similar findings and it is now clear that it may never have been a relapse. Given her most recent lesion (which is now over 1 and a half years old) it seems we have even more evidence that her "relapse" almost 5 years ago may not have been a relapse at all.

The abstract draws the conclusion that the osteoblastic lesions are most likely a result of the 13-cis-retinoic acid (Accutane) but I am yet to be sold. I am anxious to read more to see why they draw that conclusion. I still believe that the immunotherapy might also be suspect. Unfortunately, I was only able to read the abstract here: http://www.ncbi.nlm.nih.gov/pubmed/19492317. It seems that the full text article is not available through our medical library. I am hoping to get it through other means in the next few days. Hopefully, by then, I will have even more information and clarity. I am happy to see something finally in print. While I have personally met many other families of children with this side effect I have yet to find anything definitive. Suffice it to say, there are many kids out there that face this issue and it is something more parents need to be aware of.

See, purpose from a friendly place.

Monday, June 8, 2009

Successful Eighting

Yes, you read the headline. We have a full fledged eight your old. Sydney spent her birthday at, of all places, the Fort Worth Zoo. I should probably also mention that this was also a belated joint birthday party forAinsley. So, in that sense it was also a fouring. We had a pretty good crowd of all of their friends and a good time was had by all. My blushing bride did a phenomenal job of entertaining them with projects and crafts and the zoo was as good as ever. I was happy to say that my kids actually saw some animals this time.

You see, when you have a party at the zoo, you get your own private exhibition. They bring in 3 or 4 animals for your own little showing. This was great because as we made our way out and into the zoo there was far less animal viewing and far more of what my kiddos think the zoo is all about - rock climbing. To celebrate Sydney did her usual best and made it all the way to the top to ring the bell. She has conquered the easy and medium climbing walls and just has the expert left to master. It is always fun to watch her ease her way up to the top and then watch the 9 and 10 year old boys behind her fail. She really is pretty skilled.

Okay, so we saw some animals and we rock climbed. I think the treat for the girls was actually in the air. Cupid appeared to be throwing arrows all over the place. For Ainsley, love came in the form of Zachary Rogers - the love of her life. Once he showed up it was all Zachary - all the time. They spent most of the day holding hands. They were inseparable. You might be wondering how I handled all of this. Well, it was an easy choice for me. For what I expect from Ainsley, Zachary Rogers is perfect. No tattoos, no motorcycle, no Mohawk. I fear it can only go downhill from here.

Sydney seemed to be pierced by one of Cupid's arrows as well. She and Jonathon (Claudia's son who also spends the days with us during the summer) were down right giddy with playfulness. They kept chasing each other around. I have never seen so much flirty play. While neither one of them would ever admit it (in fact, they would fervently deny it) I can certainly tell you that something was in the air.

It ought to make for a very interesting summer.

I am glad she is getting better at sparring in Tae Kwon Do.

All in all, it was wonderful. For me, it was sentimental as I realized that she has finally reached a point in life where she has spent more time out of treatment than in it.

That is quite special.

And one reason that my purpose is so strong.

Friday, June 5, 2009

Texas fried parents

Well, unfortunately, I did not come back with any pictures. Instead, as a treat, both Lynley and I came back with significant sunburns. Not to worry, we were, of course, wise enough to cover our kiddos from head to toe in sunblock. We just weren't wise enough to cover ourselves. We though I little bit of sun would not hurt us. We thought a tint of color might be nice. We were wrong. We are idiots.

There I said it.

I guess it isn't exactly true to say that we were the only ones who got burnt. It would be more accurate to say that we were the only idiots in the Dungan five to get burnt. Sydney also got a little burnt but that had less to do with our own stupidity and far more to do with an evil new form of sunblock. You see, for the kiddos, we used traditional sunblock on their bodies - lotion or spray and we rub it in. It is dependable and the coverage is good. However, on their faces, we used this new kind of sunblock which looks like an over grown chapstick. The problem with the chapstick variety is that you can not see what you have covered and, unlike lotion, it does not spread. It only covers what the top of the chapstick covers. We apparently missed two stripes right under Sydney's eyes. She looks a bit like a football player that has black stripes under the eyes except, of course, her are bright red.

This fasion trend comes just in time for Sydney's 8th birthday. Yep, tomorrow, she turns one year older.

Pretty impressive, huh. Wow, it makes me think. We are so unbelievable lucky.

We have been blessed with purpose.

Thursday, June 4, 2009

Playing Hooky

Today, Lynley has taken the day off from work. I too am going to take the morning off. If all goes as planned we should have an absolute blast. You see, the Dungan five are heading to NRH2O (a water park) with the kiddos for a few hours of fun this morning. I am somewhat concerned about the coolness of the water but I am quite sure that a blast will still be had by all. I simply can't wait. We will be sure to take some pictures and I am even more sure that we will have some great stories to tell tomorrow.

Ooh, Lynley just found several packets of sugar hiding in the drawers of the bathroom. Ironically, Ainsley just came down the stairs a few minutes after. I asked Ainsley if she knew anything about the packets of sugar.

I could watch her brain processing.

She whispered "No Daddy, I love you."


Until later.

Purpose thrives.

Wednesday, June 3, 2009

That is not appropriate

You know, you learn a lot about yourself through your kiddos. In fact, I can honestly say that I have identified many of both my learned and my genetic behaviors through the twerplets. Most importantly, through them, I have been able to see, first hand, my most annoying traits. They say that imitation is the sincerest form of flattery. I just wish they would pick my some of my better traits to imitate.

Have you ever been told your behavior is "inappropriate" by a 3 or a 4 year old?

No, well I hear this statement on a daily basis. To almost anything I say or do Ainsley can find something inappropriate about it and she is the first to point it out. How irritating! I wonder where she got that from?

Last night we were sitting around the dinner table. As usual, everyone was wanting to say the prayer. It is a battle in our house. On some occasions we will spend as much as 5 or 10 minutes listening to each of the kids deliver their own dinner prayers. This is often complicated by the fact that it is always difficult to get everyone to sit at the table to get started. Ainsley and Graham always have to go to the bathroom they moment the dinner bell rings. Sydney is often reluctant to get off of the computer or to pry her nose from a book. Her mother is the same way. Additionally, there are always items forgotten. So, Lynley or I are constantly getting up to get the ketchup, new napkins, or whatever whims the kids can come up with. The point is that getting dinner to the table is not a problem. Getting people sitting at the table definitely is.

Last night as our effort to sit at the table kept drawing on I kept seeing our dinners get colder and colder. Ainsley was the culprit on this occasion. She was in the bathroom washing her hands for the third time. The rest of the kids were fighting about who was going to say the evening prayer. I knew this was going to end up in a situation where everyone had to say their individual prayers. My dinner was going from cold to frigid.

I had it.

I told them I would say the prayer and that would be it. I was not creative.

"Thank you for our food. Amen."

That was followed by "Thank the lord. Now we can eat."

Ainsley apparently could not hear me very well as she raced to the table. The next words out of her mouth were "Daddy, you said spank the lord. You can't say that."

"That is not appropriate!"

Everybody had a hearty laugh. Ainsley, however, was still very disappointed in me.

Wow, was that what I looked and sounded like.

Maybe I need a spanking.

Regardless, I just wish they would copy my purpose instead.

Tuesday, June 2, 2009

A day of relaxation

Day 1 of summer went off without a hitch - or at least that is about all I know. In fact, I was down right undaddy like. Outside of lunch I did not see or hear my kiddos. I was completely selfish. I worked. I am happy to report that the kids appeared to have an extraordinary day with Claudia. Apparently, they played at the park, swam in the pool, destroyed the playroom, and played some mean games of tag. I was happy for them but I must also say that I was ready for the break. I was ready to get some work done.

I know that doesn't sound too loving of me.

But, what can I say, I was ready. Now I can hopefully restore some balance.

I have got purpii everywhere.

Monday, June 1, 2009

Summer begins!

Good morning! Summer is here and Lynley has pulled out all of the stops. In fact, on Saturday, Lynley took control and we took a mini vacation. We loaded up the family station wagon with dogs and twerps and headed for Mineral Wells. There was a quick stop by Walmart for snacks, water, and a few fishing poles but, outside of that, it was primarily a beeline for rest and relaxation. We were there within about a hour.

We started out with a brief hike. The kiddos loved the opportunity to run through the woods. There was certainly an air of excitement about them. It is truly great fun to watch the wonder and surprise in their eyes. In brought back memories from my own childhood of exploring the wild near our house in El Paso. Their were lizards, spiders and everything wondrous in the eyes of a child. Somehow, I had remembered these types of exploring activities as being much less tiring than I was experiencing. I was amazed at how quickly I started to feel the burn in my calf muscles. It became clear very quickly how out of shape I truly was. Regardless, the kiddos marched on. THe clearly had no sympathy for my poor physical condition. Suck it up, Dad.

It was not long before the kids were ready to fish on the banks of the lake. If I am being honest, I never really though we would catch anything, but I thought it would be fun. I was right on both accounts. We spent about an hour fishing the edges of the lake and everyone had fun. There was some excitement as we stumbled upon a water moccasin swimming along the edge of the rocks. Good for us we was not interested in coming up onto the dock where we were fishing. I was sorry that we did not even get a single bite from a fish and a little surprised at how much fun the kiddos had even though there was no actual catching of fish. In fact, an hour later (and ever since) they have been begging to go back fishing. I can;t imagine what their excitement will be if we actually catch something. I can already tell that we will be going back soon. I don't know whether we will make the trek all of the way back to Mineral Wells but it would not surprise me if they talked us into going to one of the local lakes in the next few weeks.

The rest of the weekend was fairly uneventful but full of swimming for the kiddos.

I guess the big news is that Miss Claudia will be make her first appearance of the summer at the Dungan household. The kiddos can't wait and neither can Lynley or I. It will be a summer of fun and, hopefully, a little learning as well.

Let the Summer of purpose begin.