Frustrated

Throughout our journey I have had the opportunity to meet hundreds, if not thousandsm of families of children with neuroblastoma. It is always bittersweet. First, it is always heartfelt when meeting another child with neuroblastoma. For me, there is always an immediate kinship. I have an immediate bias towards anyone that has a child with neuroblastoma. In fact, outside of my own family they are my highest priority (don't tell any of my clients that.) But yes, sorry, this is one of those times where there is an "in" club. The unfortunate problem with that is that to be a member of the "in" club you have to have a child with neuroblastoma. That is the bitter part.

It is also bittersweet because families generally fall into a couple of categories. They come into our lives because they have a question about neuroblastoma. We talk with them. We develop friendships. We invest in their lives. Eventually they finish treatment. If they are lucky, they finish and enter back into the real world. Other than a yearly update to their website this is about all we will ever hear from them again. It is sad to see them go but something we hope and pray for each and every child with neuroblastoma. On the other side are the families of the children who eventually succumb to the monster. It is with these families that I typically develop the strongest bond. In fact, on any given day there is a flood of memories and thoughts of many kids that have gained their angel wings. To this day, there is not a single candy or coke machine that I see where I don't think of Paul Saxon looking for change.

So many memories.

Bitter sweet.

All of these are tough for me. Alive or in heaven I think of them all often. I wonder what they are like today.

However, those are not the most bittersweet for me. This distinction is reserved for a group of children whom, from the very beginning, I know are never given a chance. These are the children with neuroblastoma that are treated by oncologists with little or no knowledge of neuroblastoma but with an ego that makes them believe they can. These are the toughest for me. These are the children that are treated at hospitals with no one who specializes in neuroblastoma. Let me be clear. I don't care where you are treated. I don't care if you have taken your child to Sloan. I don't care if you take your child to a NANT institution. I don't care if you take a child to a hospital that has an oncologists who participates on the COGs neuroblastoma committee. In fact, as long as you are being followed by an oncologist that specializes in neuroblastoma it can be a good decision. Any one of these will give you a chance at survival. Anyone of these can give you hope.

But again, that is not the group I am talking about.

The group I am talking about are the group of patients that don't do any of those things and elect to be treated by an oncologist without any real neuroblastoma experience - and there are 1000s of them out there. These are the ones that are ultimately bittersweet because these are most often the kids that succumb to the disease when we all know that they shouldn't have. They die because their tumors weren't resected when they should have been. They die because they weren't treated with the most effective drugs, they weren't transplanted when they should have been or they were transplanted when they shouldn't have been. They die because their drugs were administered properly. They die because they weren't followed or scanned appropriately. These are the kids that almost always succumb to the monster. Worse yet, it wasn't because their disease was that bad, but rather, because the treating oncologist didn't follow the procedures that we know maximizes survival. Ultimately, it costs lives. AND it happens often.

Patients all over are treated contrary to what neuroblastoma specialists have proven to maximize survival.

These are the ones that frustrate me. These are the ones that bother me the most. In the last two weeks 4 children with neuroblastoma have passed - 3 of which should have been prevented. 3 of which died, not because of the nastiness of the disease, but because of the incompetence and poor decisions of the treating oncologist. While I can't guarantee that any of them would have survived forever, I know they should not have died now.

It is horrible.

Frustrating.

I hate it.

This is another reason why purpose is so necessary.

In the weeds

I suppose you are thinking that our anniversary must have done me in. I only wish. Unfortunately, my excuse is not even that exciting. First, I was without Internet access for a few days. With the frequency with which that happens you must assume that I live in some rural area or in a third world country. Nope. I live almost smack dab in the center of Fort Worth, TX. In fact, I am so close to down town Fort Worth that it does not qualify as a suburb. I live in a big high tech city. No, the reason that I have such sporadic and poor Internet service is because I am a Charter cable customer. Their service is simply that unreliable.

Again, in case that was unclear, Charter Cable has unreliable service and their customer support is horrible.

You may think that would be the only reason for my absence. I mean, isn't that enough. No, I am a geek so I could always post to my blog from my iPhone in a pinch. One of the main reasons I have been "unavailable" has been a huge deadline that is looming over my head. The good news is that all of that will come to an end late tonight. This project has left me burning that candle at both ends and has only been complicated by the lack of Internet access.

I wish I had a better excuse. For the most part I have the luxury of having a very flexible schedule which allows me to put my family first. Unfortunately, when deadlines loom, my schedule is less flexible. Thankfully deadlines like this are few and far between.

So, in the meantime, bear with me.

Just so you know, the kids are great. They are testing at school right now so there isn't any homework or other school work. Outside of ensuring that they have 4 sharpened #2 pencils, their lunch, and a snack there is very little preparation for them. In fact, the only problem I can think of is the fact that they are going through a rash of bickering amongst one other. Perhaps, this is partially a result of my neglect due to this latest project or, perhaps, they are just being siblings. None the less, it is fairly constant and irritating. I will let it slide for now.

But, come tomorrow, the sheriff will be back in town.

My purpose will be back in gear.

13th Wedding Anniversary

Yep, folks you saw it hear first. This is Lynley and my 13th wedding anniversary. Couple that with the 7 years that we were together before we were married and you can see that we have been betrothed to each other since before the beginning of time. How inspiring! Married for 13 years straight. Is it a testament to deep love? Our deep conviction? Or, is it our commitment to torture each other for the rest of our lives. Yes, it is a blurry line. ;)

We have crossed the boundary from newlyweds to oldyweds and even slinked straight through the seven year itch with nary even a scratch. Yes, there is no doubt, for one reason or another, we are clearly dedicated to seeing each other through to our ultimate demise.

So, as I sit here on or 13th anniversary I have to think. I have to reflect over the last 13 years. It has not all been easy. Lynley and I are very different people. We always have been. In fact, outside of her and I, I don't think anyone really realizes just how different we truly really are and, if you looked into our brains, I think you would be shocked at what you would find. We are talking about super secret differences that no one even has the slightest inkling about. Couple those massive differences with the fact that our marriage had to face Sydney's cancer - (a known destroyer of marriages) and the fact that we both have different points of view (remember I kill cancer, she protects quality of life) , and one has to wonder how we are still together at all. I am a saver. She is a spender. I thrive on change. She hates it. She is a neat freak. I can handle the dust. She is organized and I defy organization. Our opinions differ - on almost everything.

The list goes on...

and on....

So, why do we work? Why 13 years of marriage?

I think it comes down to this. We are a team. We always have been. We have always been in this together. When the going got tough, we got going - TOGETHER. Outside of all of the differences in our characters there is something very similar in our souls. Deep down inside, we are always there for each other. Regardless of the differences, the petty disagreements we are there for each other. When it comes to it, somehow, we get it. We get each other. We have a core connection.

I know that doesn't sound very romantic but, hey, this is our 13th anniversary. It is hard to get all gushy about the 13th of anything. But I can tell you this.

I love being married to Lynley. I love damn near everything about her. And, if there is anything I have learned over the last 13 years, I know that I only want to be closer to her over the next 13, 50, or whatever I have left in life. I love her more today than the day we were married. I want to be a better husband to her. I want to be closer to her. I want to know more. I want to share more. I just want more of her. More than ever. While in some ways the challenges she and I have faced in life have strengthened our bond, they have also taken away something very valuable. They have taken away our focus and priority of each other. That is my resolution for the next thirteen years. With every day, I want to make sure she knows were she ranks in my life. She is my foundation. She is my everything. She is my number one.

Sorry, honey, it does not look like I am done yet. It looks like you are going to be stuck with me.

She is the purpose I talk about the least but, she is the most important. Without her, I would be without it.

The Saga Continues

Good morning! Thank you for all of the advice regarding Graham's iPod touch. I genuinely appreciate all of the email. Just do give you an update. The teacher did send an email out to all of the parents. Yesterday I also met with the principal and the Director of early childhood to see if we could spread our net a little wider. There is much suspicion surrounding some of the kids in Graham's class. Unfortunately, since water boarding is out we will have to depend on guilt to get the better of whoever it was before we have any hope of its safe return. Unfortunately, with the prime suspect, I am confident he is without a soul so I am doubtful it will work with him. I know, sorry, harsh words. I just don't have any tolerance for children whose parents don't discipline them.

I know, I know. I will tread lightly. But, this is my diary and I can say whatever I want to.

The good news out of this situation is that Graham has taken this all pretty well. He is such a gentle soul. He is so innocent and pure. It never occurred to him that someone would steal his precious iPod. It just never registered. Why would somebody do something bad like that? It is a little difficult for me to watch him learn this lesson about life and people. I just wish we lived in his world.

So, this is Friday. This is actually the start of OLSAT testing for the 2nd grade and next week will be jam packed with SAT testing. We took both Graham and Sydney out of Tae Kwon Do early last night to ensure that they got a complete night of rest before their brains were challenged today. Interestingly, Sydney is not nervous about the tests. In fact, she is really, really looking forward to them. In her words, "I love the tests where I get to fill in the bubbles." Good thing, too. She has quite a bit of bubbles before her.

As I write, she just plopped down on the couch and seems rather well rested and chipper. That was, of course, before Lynley came in and told her to step away from Pink Panther on TV and get up and into the shower.

Well, as you can see, it is starting to move around here.

It is time to get my purpose into gear.

Stolen Innocence

Good morning! Well, at least I hope so, anyway. Given yesterday afternoon's escapades I am not sure all of the dunganlets will have recovered. Graham, unbeknownst to his Mom and Dad, took his iPod Touch to school for show and tell. For the record, we have been clear about what Graham can and cannot take to school, the iPod touch clearly being on the list. However, because this was for "show-and-tell," he apparently did not feel that he was braking the rules.

The unfortunate part of all of this is that one of the kids at this very "Christian" school stole it. Show and tell occurred at about 1:15. After that, Graham was asked to put it in his backpack in the hallway. After a Chinese class and a test on his bible verse, Graham made it back out to his backpack to find it missing. Only the kids in his class new of the iPod Touch. Before Graham had discovered it missing, several of the kids had made it back out to the hallway to gather up their belongings. They do the bible verse individually in order and then, after you complete your bible verse, you are supposed to go gather up your things and prepare for dismissal. It is apparently during this time that the thievery occurred.

We have a pretty good idea of who it probably was. It seems like there is a bad seed in every class and this kiddo hits the mark. He is known for lying to teachers and being a constant trouble maker. In fact, 2 parents pulled their kids out of SCS last year because they refused to discipline this child. Regardless, Graham heard him bragging about hiding/taking it to a couple other boys. Unfortunately, there is little that we can do, and I suspect that this kiddo will get away with it, yet again. It is especially sad for Graham who saved up for an entire year to purchase his iPod touch. He bought it just 2 weeks ago.

It is a good lesson, however, I think he has learned it. It is time to get his touch back.

I honestly don't know what to do. I can't outright blame this kid. I have absolutely no proof. The entire case is built upon here say from a 6 year old. Any ideas?

I need amo for my purpose gun.

Neuroblastoma CNS Relapse

This is a re-posting of some information that I have posted previously. However, it is something that should remain fresh in everyone's mind. The information is as true today, if not more so. Very recently, I had a friend who had a child with a brain relapse. It disturbed me that she did not know where to turn. The issue was not with the fact that this was not a well prepared mother. She happens to be a clever one. The issue was that the information was not readily available. This is one of the things on my list of the top 10 things every one should know about neuroblastoma and the simple fact of the matter is that the information is not readily known outside of a few brains of people with too much time on their hands.

Now, you should know that I am not biased. If anything, over the last few years, I have proven the exact opposite. I don't care which researcher or which institution. I am simply interested in identifying the best options for our children wherever they may be. Furthermore, when I do have bias you should also know that I have absolutely no problem stating that it is so.

Now, onto what is important.

If you have been told that your child has a brain (or CNS) relapse one of the first calls you chould make is to Sloan Kettering. They have had tremendous success where other have failed miserably. This is a life or death decision and it needs to be made quickly. I have read the research in this particular area for years and there just is no comparison and no one with the same level of success. To give you an idea of the difference - most kids with CNS relapse will succumb to the disease within 3 to 6 months at best. It is a nasty diagnosis. However, if you qualify for the study at Sloan Kettering you will find your odds of survival crawling up to 80% or more.

Big difference.

Many will argue that this difference is due to patient selection. Honestly, I don't know if that is the case but I can tell you that I know many of the survivors personally and can tell you first hand that this is something you need to investigate. If you do qualify it could very well mean life.

Don't forget that. As of this date, remeber this simple equation:

CNS relapse = Sloan Kettering

Listen you don't have to stay there. You don't even have to listen me. Just make sure that, as you are listening to all of the doom and gloom, you pick up the phone and call Sloan Kettering to get a second opinion. It is worth asking the question.

And again, do it quickly. Time is of the essence and there is much to be coordinated.

Finally, unfortunately the latest abstract on the research regarding the CNS relapse from Sloan Kettering that I have is from 2007. However, much of the success still rings true.

It can be found below:

Metastatic neuroblastoma (NB) to the central nervous system (CNS): Improved outcome with combined modality including 131-I-8H9 or 131-I-3F8 radioimmunotherapy (RIT) delivered through the cerebrospinal fluid (CSF).
Background: NB metastatic to the CNS (NB-CNS) is difficult to control. We describe a salvage regimen incorporating intra- Ommaya RIT delivered to the CSF. Methods: 37 patients (pts) with NB-CNS (parenchymal masses and/or leptomeningeal [LM] carcinomatosis) treated at MSKCC from 1988 through 2006 were reviewed. Nine (group #1) of 37 pts developed NB-CNS metastasis (median age 3.8 years) and were treated with a salvage regimen: resection of parenchymal masses, 2160 cGy craniospinal irradiation (CSI), intravenous irinotecan and oral temozolomide, and RIT with 131I-8H9 and or 131I-3F8 targeting tumor associated antigens on phase I/II studies. Immunotherapy (intravenous anti-GD2 monoclonal antibody 3F8 plus subcutaneous GM-CSF) was also given for systemic control. Survival was compared to the other 28 (group #2) pts who developed NB-CNS (median age 4.2 years) treated with combinations of surgery, chemotherapy, and radiation but without CSI + RIT. Results: All 37 pts had high risk disease at initial diagnosis of NB. 9 of 9 group #1 pts had marrow and/or bony involvement; 6 of 9 had MYCN amplification and 5 of 9 had serum LDH >1500 U/ml. All had intensive chemotherapy and radiotherapy prior to CNS relapse. Despite this, the CNS salvage regimen was well-tolerated. Myelosuppression following CSI and chemotherapy was common; 2 pts received stem cell support. All 9 pts in the RIT group are alive and well, disease-free at 3+, 11+, 15+, 18+, 18+, 20+, 22+, 31+, 42+ months since CNS relapse. In contrast, pts in group #2 had a median time to death of 5.5 months, (p<0.0001) for survival by Kaplan-Meier analysis. Conclusion: Similar to CNS metastases in most other solid tumors, conventional therapies have been ineffective for NB-CNS. The addition of RIT using 131I-3F8 or 131I-8H9 is well-tolerated and improves the prognosis for these high risk patients.

There you have it purpose in bold.

Daddy the Grouch

After a horrible night of rest I can barely keep my eyes open this morning. It all started with that sensation of waking up every 30 minutes or so all night long. It abruptly ended at 2:15 AM when I awoke from a nightmare of Graham being eaten by a shark. Wow, where did that come from? I am not sure I really want to know.

Regardless, it was a nasty way to start my morning and, even though I tried briefly going back to sleep, it seemed nothing would take. Now that I cannot keep my eyes open I am wishing I had tried a bit harder. This is not the way I wanted to start the week. First off, I like to hit Monday's fresh. Secondly, this morning I am supposed to be officially starting my second month of Insanity(infomercial exercise program that identified me as a sucker). The second month is supposed to be twice the intensity and, after barely surviving the first month, I was already a little apprehensive. I know I needed the sleep to help fuel my body for a very intense workout and I fear I will not have the energy necessary to get the most value from my workout. Perhaps I will feel better after some breakfast and my final trip to the dentist for the finishing touches on the never ending root canal.

I know this is a really bad start to this week but it really was no indication of the weekend. Although it rained, it really was a tremendous weekend for the Dungans. We had a blast. Despite my grogginess, I guess I should shed some light on some of the highlights.

Well, I finally had some great one on one time with Graham while the girls attended some birthday parties on Sunday. Graham and I grunted and did boy stuff. We ended up at Sports Authority. We shopped and practiced on the putting green. It turned out they were having a pretty good sale and something caught Graham's eye - an Airsoft BB gun. Yes, it was a very official looking handgun that shot those little 6mm plastic biodegradable BBs.

Hmm. That sure is a boyish thing to get. Sure, he is young but what a great little hobby for us to bond over. Furthermore, what an incredible opportunity to teach him some responsibility.

Yeah, I decided not to confer with Lynley on this one. This was a manly decision.

Next thing I know, Graham and I were in the back yard shooting plastic BBs at a milk carton as I taught him the ins and outs of gun responsibility. (I.E. how to use the safety, how to hold the gun when shooting, how to hold the gun when it is not being used, how to load the gun, how to cock it, what to shoot at, what not to, etc.) Before you call CPS, you should also know that the gun is kept in the safe and he is only allowed to use it with Mommy and/or Daddy.

Well, of course, this was the best day of his life. And, of course, he and I really bonded over this exercise. The only items left to address were the breaking of the news to Lynley and teaching him to keep his mouth shut about it at school. The last thing I wanted him doing was running around his gentle Christian school screaming about how his daddy bought him a real gun.

Telling Lynley was easy. Frankly, I knew she would like it about as much Graham. Her fascination with guns should also give you insight into why I am such a dedicated and well-behaved husband. Regardless, she had the same concerns as I and I think we are addressing them appropriately. Graham and the girls will have the requisite fear of and respect for guns.

As we sat around the dinner table, of course the discussion turned to the amazing super-duper Airsoft BB gun Daddy purchased for his 6 year old son. This discussion was quickly quashed as I broke into a lecture on the danger of guns and another overview of the rules. This was followed by another plea -

"Please do not go to school and tell everyone that daddy bought Graham A BB gun."

Graham:"I am a good secret keeper Dad. I love you."

Sydney:"I won't say anything."

Ainsley:"I can't keep secrets. If I hear something, I have tell my teacher and all of my friends at school."

Oh well, no good deed goes unpunished.

Okay back to reality, time to put away the BB gun and get out my purpose guns.