Friday, April 30, 2010


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.


I hate it.

This is another reason why purpose is so necessary.

Thursday, April 29, 2010

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.

Monday, April 26, 2010

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.

Friday, April 23, 2010

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.

Thursday, April 22, 2010

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.

Tuesday, April 20, 2010

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.

Monday, April 19, 2010

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.

Friday, April 16, 2010

Ainsley has parvo!

Yep, I knew that would get your attention. I am getting better and better with headlines. And yes, Ainsley really does have Parvovirus B19, otherwise know as fifths disease. First off, for those of you with significant worry - relax. Unless you are pregnant or a susceptible adult you really have nothing to worry about. Of all of the predominantly childhood diseases (viruses) to get this is one of the easiest. The ill child typically has a "slapped-cheek" rash on the face and a lacy red rash on the trunk and limbs. (See, no reason to call CPS) Occasionally, the rash may itch. An ill child may have a low-grade fever, malaise, or a "cold" a few days before the rash breaks out. The child is usually not very ill, and the rash resolves in 7 to 10 days.

It is nastier for adults and you certainly don't want it if you are pregnant. An adult who is not immune can be infected with parvovirus B19 and either have no symptoms or develop the typical rash of fifth disease, joint pain or swelling, or both. Usually, joints on both sides of the body are affected. The joints most frequently affected are the hands, wrists, and knees. The joint pain and swelling usually resolve in a week or two, but they may last several months. About 50% of adults, however, have been previously infected with parvovirus B19, have developed immunity to the virus, and cannot get fifth disease.

So, should we keep Ainsley in a bubble? Naw, it is too late.

A person infected with parvovirus B19 is contagious during the early part of the illness, before the rash appears. By the time a child has the characteristic "slapped cheek" rash of fifth disease, for example, he or she is probably no longer contagious and may return to school or child care center. This contagious period is different than that for many other rash illnesses, such as measles, for which the child is contagious while he or she has the rash.

So, if you start to see a rash on your child's cheek it looks like we are the culprit.

I am guessing all of the boys in Ainsley's class will probably start showing up to school with a red cheek.

Sorry about that.

Just be glad it wasn't something else. Trust me, with my twerplets it could have been far worse.

Now, on to purpose I can control.

Thursday, April 15, 2010

A busy birthday lies ahead

Good morning! Yes, it is officially my birthday today. I woke up to literally hundreds of email and facebook shout outs congratulating me on yet another year of survival. Frankly, I never even noticed that I had plugged in my birthday information to facebook. Other than posting my blog to it and communicating with other families, I have never spent much time on facebook. Frankly, I just don't have the time. But, I must admit that it did feel pretty good to wake up on my 39th birthday to such a pile of birthday well-wishers. It may just make my day.

Thank you.

I still maintain that everyone deserves a celebration of their life every year. In my mind there should be days off of work, parties, presents and ice cream all day long. Yes , I am still a kid at heart. But, unfortunately, I don't even heed my own advice. My day is jam packed with work. Even lunch seems to be booked with non birthday-ish activity. It turns out I will be meeting another family of a child with neuroblastoma over lunch. I don't guess that is surprising and, if I am being honest, it is more important than my birthday and will probably mean more to me anyway.

Tonight, however, is all about me. It will be an early (5:00) dinner at Outback Steakhouse (one of my favorite kid friendly dining haunts) followed by an hour and a half of Tae Kwon Do practice. Steak and lobster, here I come.

Well, enough birthday talk. Everyone seems to be doing well. Graham's asthma seems to be improving with the use of steroids. Sydney seems to be on the mend as well. She has not complained of a sinus headache for several days and her trips to the nurse's office have been surprisingly non existent for a change. For Ainsley, who mimicks every one of Graham and Sydney's ailments, well, she has shown miraculous improvements as well. It seems like she is going through a dry spell of mimickry material. But, as you can see, it looks like everyone is on the mend. The green pollen cloud is slowly starting to lift from over our house. Even Lynley can once again sit on the back porch.

Well, again, thank you for all of the birthday wishes.

For now, I am off to another day of purpose. What a great way to start my 39th year.

Tuesday, April 13, 2010

The Dudester

Well, it has been quiet awhile since I broached the subject of Dudely. Surrounded by a cacophony of scene stealing females he is often left by the wayside.

Not in my mind though.

Graham is having an interesting spring - both mentally and physically. Frankly, right now, his physical ailments seem to be dominating. Among a litany of wonderful traits, Lynley, unfortunately bestowed upon Graham two not so good little genetic hand me downs. The first is asthma. The second only complicates that little gift as "el dudo uno" also has significant allergies to oak. That is a significant double whammy that is further compounded by the fact that North Texas is currently under about an inch of oak tree pollen right now. In fact, if you looked down from the moon at North Texas I am quite sure you would see nothing more than a yellowish green smudge.

Graham's condition right now is somewhat dangerous. We have been ordered to get as much albuterol in him as we can possibly fit into a day. Right now, that is somewhere between about 4 and 5 breathing treatments. He is also on a slew of medications to alleviate the symptoms and to try and control the condition. At times, I must be honest and say that I have been concerned for his welfare. Rushing him to the hospital has crossed my mind on several occasions. Thankfully though, the moment I am just about ready to throw him into the car or call 911 he seems to finally catch his breath and the coughing fits temporarily fade away. I don't really have much more to say on the subject. I just feel helpless. It is hard to watch when you know there is nothing you can do to make it better. We just keep medicating him and hoping for the best. Spring will eventually end, right?

On the mental side, Graham has really come out of his shell this year. While I still find him completely and utterly compassionate, he is finally really showing signs of growing into his little boydom. He is far more social and, for better or worse, is beginning to get into trouble. He is doing boy things - like talking to his friends about inappropriate things and rough housing. He is going through an adjustment phase. Learning his boundaries and making new friends. All in all, I am pretty happy with it. It has been a long time in coming and I am happy to see him finally coming out of his shell.

I full expect him to continue to get into trouble. That is what this period is all about - learning what you can get away with. This is where my son, for better or worse (again), got many of his traits from his Dad. He is going to push the limits on fun and laughter. He is going to do stupid things and say even "stupid-er" things. It is okay though. It is all about being a growing Dungan boy.

Ah, and his grades? Well, Graham doesn't get grades on a typical scale yet. However, I can tell you he has greatly improved this year. No doubt - thanks to Mrs. Lewis. I have been blown away by his growth. On a scale of 1 to 10 he is at about a 9 academically and getting smarter every day. And yes, he has discovered math, his daddy's favorite subject. And, yes again, he is a whiz.

All in all, I am deeply proud of my Dudely.

I just need to find him some asthma relief.

I will have to add that to my purpose.

Monday, April 12, 2010

A new type of neuroblastoma counseling

I had a new experience this weekend. I had the privilege of not talking to the family of a child with neuroblastoma but, instead, talking to the friends of a family of a child with relatively newly diagnosed neuroblastoma. This was also unique in that the family of the child was not around. I can not say that I have ever been in that position before and I must be honest that I really enjoyed it. I regularly talk to friends and family members when they are all together but I have never done so when the family was missing. This presented many new opportunities for discussion that have never previously been possible. Honestly, I don't know whether I was a huge success of a catastrophic failure - only time will tell. But, I must be honest, when I found myself in this situation I tried an entirely different approach.

I began by asking myself. If I had to do this all over again, what would I want all of my friends and extended family to know? What thoughts and memories of this conversation would I want them to remember and take with them? What is it that they absolutely have to know, that they likely would never be comfortable asking the family, and likely never find on the Internet without months or years of study?

Additionally, because the family was not around, I also knew that I had another gift not usually afforded me in my previous situations - blunt honesty. Often when I talk to friends and family of the newly diagnosed I steer clear away of statistics and the long term reality of the disease. I give a softer gentler view of the disease and I focus on the things that the family needs to know - like the fact that what they are feeling is normal. I also try to give them confidence in their direction assuring them that the path that they are on is the correct one. If they are trying to make a decision between one path or another, I provide an unbiased view of both options and try to establish that, in many cases, there is no proven direction. In essence, I focus less on facts and cold hard brutality (lord knows, they are already experiencing this first hand) and more on lifting them up with confidence and assurance. Best yet, I can have these conversations without any statistics.

However, coming back to an environment where there are no immediate family members around, I do have more liberty.

And liberty, I took.

I wanted the friends to know the gravity of the situation. They naturally have questions about statistics and aren't afraid to ask for them. But, in my mind, a simple survival statistic was not enough. I want them to appreciate the length of this journey and the fact that while there effort was nice and thoughtful now, it would be needed the most in 9 months, a year or two down the line. When the newness wears off is when most leave and begin to wonder why they don't just "get over it", I wanted them to know that there was no getting over it. It was something that would now be a part of who they were. It would be something that there really never was an end to. It would be something where true friends were measured by the presence not at the beginning of the journey but in the middle. I also wanted them to know that while many believe that he was sick and that he would eventually get better, with neuroblastoma the real threat to his life really occurs in years two and three of his journey.

In the end, I left most with the information that I thought was most important. I believe I left impressions of not only the seriousness of the situation but the long term nature of it. They now know that induction, transplant and maintenance are just a battle in a much larger war and they are merely at the beginning of a long life altering and mind mending journey. Like I said, I don't know for sure the impact of my words. I can tell you that all of the people I spoke to seemed genuinely appreciative of my time and my words.

I only hope that my time will translate an already well organized and dedicated group of friends into a supportive one that will remain with them through the long hall and will know what to say when times are the toughest.

Time will tell but I think this might be a good thing. I can honestly say that they left with the information that I would have wanted my friends and family to have.

I guess this probably seems like a strange entry to those of you that have never had a child with neuroblastoma or some other serious long term life threatening condition. It may not seem like that big of a deal. However, I can assure you that standing on this side of the equation we all wish you just knew.

I am going to watch how this plays out but I am strongly considering putting together a guide to supporting a family with a child with neuroblastoma. Thoughts?

I found a knew way to exert my purpose.

Friday, April 9, 2010

Twerp recap

Good morning! Well, I am back. Yesterday morning was, unfortunately, part two of a root canal gone wrong. Thankfully, today that is all history and now all I have left to do is have a permanent filling put in its place. I really can't complain too much. This time I had the pleasure of having my root canal performed by an endodontist. I felt nothing other than a little soreness in my jaw from having it cranked open for a little over an hour. I am just hoping that this time it works.

But enough about me. Who really cares? It is about the kiddos, right? And, I have been neglectful in my twerp reporting duties. I guess that has been the case simply because not a lot has been going on - or maybe, things have just been flying by too fast. Let's see.

Sydney has had a tough time this spring with allergies. At least, I hope it is allergies. If it isn't allergies then there is a whole other level of horror that we are getting ready to deal with. She continues to have regular headaches and she is on a slew of drugs to try to deal with the effects. As you may recall, her sinuses are chock full of snot. She has also been complaining of a burning sensation in her lungs after some of her more intense cross training workouts. I think we have all experienced that at one time or another but it has never really happened to her before. It is just one of the many minor ailments that have plagued her recently. It remains hard trying to walk the line between rather intense allergies and the threat of the monster in the closet. Thankfully, this month is scan month and while our routine set of scans have been peeled way back it may at least give us a little comfort that it is just ordinary nothingness.

On the other hand, Sydney has continued to excel at school. Recently, she brought home yet another report card full of straight As and excellent behavior. The only minor quibble she received from her teacher is the fact that Sydney continues to be a social butterfly flitting from one conversation to another - just not always at the most appropriate times. Apparently, she enjoys being the center of attention. Gee, I wonder where she gets that.

Physically, Sydney has been less engaged over the last month. Last night was a better practice at Tae Kwon Do but the last few practices have been filled with only half intensity. This has not only been seen in Sydney, I think it has been true for most of the team. Although practices continue full throttle throughout the tournament season there is no immediate threat to prepare for. There is no looming tournament. Our next national qualifier for Graham is about six weeks away and we are 3 months out of the Junior Olympics. Give it a few weeks and I think they will all snap back into tournament form.

Well, I had hoped to provide a full update of all of the twerplets but as you can see I have already run out of time and space with my dribble so the rest will have to wait.

Good things are coming though. It looks like Lynley got us some huge discounts at Six Flags so we may be going there this weekend. I am sure there will be many great stories to follow.

Until then I am off to chase purpose.

Wednesday, April 7, 2010

MIBG Reminder

This is just a friendly reminder that today at 12:00 AM CST we will be having our free online seminar, "Targeted Radiotherapy for Neuroblastoma with MIBG". I must be honest enough to tell you that I was sneaky and reviewed the presentation slides yesterday. I can tell you firsthand that it is jam-packed with everything a parent would need to know regarding MIBG therapy. Thankfully, in today's day and time we also have enough response data to begin making some educated decisions on when MIBG therapy might be used and how it should be utilized in both upfront therapy and relapse therapy.

I can also tell you that MIBG therapy is one that has really worked for some kiddos. In fact, I can tell you that there are several kids that I know that are here today that would not have been had it not been for this treatment.

This presentation will be worthwhile for any parent of a high risk patient to watch and file into the back of their minds. It is an weapon that could potentially be in every high risk patient's arsenal.

Registration for the online seminar can be found here:

A little bit of shared purpose for everyone.

Tuesday, April 6, 2010

What to do with Ainsley?

You know, pretty much since the day she was born I have joked that Ainsley was going to be my trouble maker. I had visions of her standing up on tables and doing body shots. I know, I know, you can't believe he just said that about his own daughter.

Awful. Yes, I know.

You see, the little twerp has always had that bubbly personality. She seemed to take the best outgoing-ness and flirtatiousness both of our genes had to offer and multiply it into some exponential algorithm that is what she is today. I guess the question is: Is it just innately who she is or did we somehow just wish this upon ourselves? I don't know what the answer is but I guess it won't change the fact that she very definitely is a flirtatious twerp with a boy hunting addiction.

Oh sure, it was cute when she and Zachary Rogers used to hold hands when visiting the zoo at the age of 3. It was even somewhat cute when she would hug Nash everyday when we left school. But now - now, we have gone completely out of control. I don't know what changed over the last few months but Ainsley's addiction has grown. Now I can't get her through the hallway without her hugging or trying to hold hands with at least 3 or 4 different little boys. At Tae Kwon Do she even sneaks off into the back stairwell with one of the little boys - he is 8, she is 4 (going on 40 with a firm grip on cougardom). Do the math.

Now it isn't that she is doing anything bad. But she very definitely has a love for little boys. Graham has even moved into sister protection mode. He gives anyone hugging her a dirty look and will break it up if it goes on too long.

I mean it. We have a problem here.

This all brings the question of what to do. Do we sit down and have a talk with her (remember she is 4 or almost 5 if you ask her)? Do we just let it go on and hope and pray that it goes away?

Honestly, I can tell you that saying something about it only seems to have had the effect of her wanting to do it more. She seems to enjoy it that much more if she knows she is not supposed to do it. Wow, is that her mother or what?

I don't have any answers. I can only tell you that Graham and I are at our wits end and even Lynley seems somewhat concerned.

What do we do to break our 4 year old's man habit?

Purpose give me strength.

Monday, April 5, 2010

Neuroblatoma Walk - a tremendous success

Good morning! Wow, the Neuroblastoma Walk was a tremendous success. I want to thank everyone for coming out and supporting the walk. It was incredible. At last count I heard that there were over 650 in attendance. Better yet, we raised about $50,000 for neuroblastoma research.

What an incredible result.

I can't speak for everyone else but I can tell you that we had an absolute blast. Sydney, Graham, and Ainsley are already asking when we can do it again. It was so nice seeing so many come out and support the cause. It was a like a reunion and I got the opportunity to thank all of the people that have played a part in Sydney's survival, our family's growth, and my sanity.

Some of my favorites were:

Mitchell - I have never caught his last name and, frankly, I don't really even know his official title. However, he was part of Sydney's journey that I will never forget. You see Mitchell did both of Sydney's apheresis-es (stem cell collections). As you may remember, our first one had some complications. You see, Sydney was overdosed with high dose heparin in post op coming out of the surgical procedure to place her apheresis catheter. Mitchell was there as I sat behind Sydney for several hours applying pressure to her hips so she would not bleed out from where she had received her bone marrow aspirations. Mitchell kept us sane as we all tried to cope with Sydney's condition. We all developed a bond as a result of that little incident.

I will never forget that. For those of you who don't remember the story you can relive it by searching for "RUNNING OUT OF BAD HABITS" at 2:30 PM on 7/29/2003 in my blog.

Another person we got to see again was nurse Margaret. She was a part of so much of our history that I don't even know where to begin. All of the nursing staff at Cooks was great. They became a part of our family. Just like any family, they all had their distinct gifts and personalities. The thing that we will always remember about Margaret was her genuine caring for Sydney and our family. You can tell when people care because it is their job and those that care because they just do. That was Margaret. She truly cared for Sydney. Sydney felt it, we felt it, everyone felt it. She was invested. I sometimes wondered, when we got bad news, was it harder on her or on us. I think that should give you an indication of the level of caring we received. I also remember that she was pregnant during Sydney's treatment. It was pretty surreal seeing her kiddos running around.

That makes me old.

There were many others we had the privilege to see. There were teachers, physicians, nurses, patients, families, friends, and even our faithful Tae Kwon Do team from GSX. It is experiences like this that really show us that it takes a village.

Well, this village made a huge difference.

This village also raised $50,000.00

This village also guaranteed that more children will be surviving from neuroblastoma than the day before.

Thank you from the bottom of my heart for being there.

It was a walk with purpose.

Friday, April 2, 2010

Seminar on Targeted Radiotherapy for Neuroblastoma with MIBG

Title: Targeted Radiotherapy for Neuroblastoma with MIBG
Date: Wednesday, April 7, 2010
Time: 10:00 AM - 11:00 AM PDT

Dr. Kate Matthay, New Approaches to Neuroblastoma Therapy (NANT) Consortium leader and pediatric oncologist from the University of California - San Francisco (UCSF) presents part 2 of the ongoing NANT clinical trial series. This presentation is appropriate for parents of children with neuroblastoma, caregivers, and health care professionals. Dr. Matthay will be presenting the latest information concerning the use of MIBG in neuroblastoma therapy. She will discuss previous clinical research in MIBG and what is currently available to patients through clinical trials. You can expect to leave this meeting with a thorough understanding of MIBG treatment in neuroblastoma, the eligibility requirements, and what is currently being offered.

To register or find out more information, please visit:

Thursday, April 1, 2010

A sanctuary is not always a safe place

So, everyday this week Sydney has landed herself in the nurses office at school. At this point, I am unclear as to whether she is trying to set a new record or whether she is just trying to get out of class. Her symptoms have been twofold - I don't feel well and I have a headache.

Neither of which do I particularly care for.

If I am being honest, the headaches scare me the most. I have some significant issues with those darn things. One of my greatest fears for Sydney is a late brain relapse and, if I am being honest, I have some pretty good rationale for my fear. You see, I have a totally unproven theory that central nervous system (CNS) relapses are on the rise. While I have no definitive proof, I do have some evidence.

You see, as treatment for neuroblastoma improves and survival increases, we begin to see different types of relapses in sanctuary sites. These are the sites where neuroblastoma hides out. These sites are very difficult to reach with standard therapies and, thus, are a a perfect place for neuroblastoma to sit and wait and smolder. Previously, we did not see kiddos relapse in these sites because treatment was so ineffective that they generally relapsed in original tumor and metastatic sites. Sites where the disease moves more quickly. In other words, they relapsed their first - before they relapsed in the CNS. Now that therapy has improved with antibody therapy and the original tumor sites are being dealt with effectively one could speculate that the sanctuary sites would become a more common site of relapse. With longer survival times, the disease in these areas now have the time to grow and get the opportunity to present themselves.

Scary thoughts, huh?

Yep, that is the kind of thing that I think of and probably the reason I will earn myself an early retirement at the Mayo Clinic's Home for Schizophrenics.

By the way, I would gladly take that over the alternative.

The good news is that it is all just a theory. Outside of some evidence of the high CNS relapse rate at Sloan Kettering I really do not have any further proof other than some speculation by some of the nation's experts. It certainly has not been seen yet. But then again, I don't think it has necessarily had the time and opportunity to do so.

Regardless, that is the real motivation behind the cringe I get every time Sydney complains of a headache which, this spring, I have heard a lot of.

The good news? Well, as of late last week, you may recall that we had confirmed that Sydney has some significant sinus issues. With spring in full bloom, there are some pretty good indications of why she is having headaches and sinus issues. For this we have her drugged up pretty well. Seemingly, it is just par for the course. Every spring we seem to find ourselves with sinus issues.

Regardless, I will feel much better if I did not find her in the nurses office again today. We have had some discussions about her nurse habit and I am hopeful that it will put an end to the visits. If not, it will be a better indication that we have a more serious issue.

We will see what the day holds.

In the meantime, we will keep our fingers crossed and keep plugging away at purpose.