Thoughts on Antibodies

I don't know whether it is the time of year or something floating in the air but I have received a ton of emails about our decision to go to Sloan lately. Seriously, over the last few weeks, I have received about 10 email asking me about our thoughts and experience on 3F8. This also comes at a time when two of our local families begin their first rounds of antibody therapy. This is obviously a thought that is on many minds so I guess I might as well chime in (again) with how we feel in a more public setting. Would we have done it again?

First off, before we get into the specifics of 3F8, ch14.18 or any of the other anti-GD2 antibodies, I think it is best to just address antibody therapy itself. Generally speaking, I have this to say:

I have seen kids with neuroblastoma. I have seen kids take antibodies. I have seen the disease in those same kiddos go away.

Antibodies kill neuroblastoma in kids.

Period.

I am often frustrated by the argument - "Well, there is no proof that antibodies increase survival." This bugs me for two reasons. First, it is wrong. There is some evidence. At the ANR in 2008 the Germans came out with a retrospective study on their use of the ch14.18 antibody and found that it appeared to show long term survival benefit. This is a study whose design was probably destined to fail. Yet, for some unknown reason, it is showing some long term success. So, in a nut shell, there is some evidence that antibody therapy improves survival. However, I would also gladly point out that it would appear unlikely that the ch14.18 study in the COG will show a survival benefit. I don't have any inside information here. It is simple math. If you look at the published survival curves for A3973 (the COG protocol Sydney was on) there was not a significant improvement in survival. With many of these patients undergoing antibody therapy you can begin to infer that antibodies must not have had a dramatic effect. That is purely speculation and given the small amount of patients on the antibody arm of this study I could be wrong.

Regardless, in my mind, this argument is relatively unimportant. We have to remember that we know that antibodies kill neuroblastoma in kids. Just like chemotherapy. Just like radiation. Just like just about any other therapy that has shown it could kill neuroblastoma. Do you think, individually, any of these single agents have shown an improvement in overall survival. Most, if not all, have not. Accutane is one of the lone exceptions. What most have shown, however, is that they have activity, that they have the ability to kill neuroblastoma cells. There is no measure of overall survival. We just know that the chemotherapy kills neuroblastoma and at what cost.

Just like antibodies.

So, in short, I don't like to get too hung up on the survival issue. Frankly, the answer isn't out there right now. We don't know its impact. Let's focus on what we do know - the facts.

We do know that antibodies kill neuroblastoma in kids. We can see that and measure it. It is not theoretical. It is a fact.

So, is all of the pain of antibody therapy worth it considering we know it kills neuroblastoma but that it may not impact survival? My thoughts?

You betcha.

We give mountains of toxic chemotherapy to our kids. Why? Because they kill neuroblastoma. We risk hearing loss, cardiotoxicity, neurologic problems and a litany of long term and short term very real side effects - just to kill neuroblastoma. So, in my mind, it makes sense to risk some short term pain, some hives, and some edema to kill some more neuroblastoma cells.

Another reason that we chose to do antibody therapy is because of how they work. Antibodies kill neuroblastoma differently than chemotherapy or radiation. They actually recruit the immune system to do the killing. Their is something romantic about training their bodies to kill neuroblastoma. Who knows whether their bodies remember it but the important thing to realize is that the immune system, the most powerful weapon we have, is killing neuroblastoma. It is icing on the cake if the immune system is acutally trained to continue this activity in the future. In some cases, it has also been shown that antibodies actually also do some of the killing for themselves. This is important.. By the end of therapy, our child's neuroblastoma has most likely developed some resistance to the chemotherapies that have been used to treat their disease. In other words, there are neuroblastoma cells that are resistant to chemotherapy. In order to kill these cells you need something that will overcome this resistance. Radiation can. Radiation is pretty good at killing neuroblastoma as well. However, radiation can only kill what is in the radiation field. So, even though it can be effective, it does absolutely no good for neuroblastoma cells that are hiding elsewhere in the body. The good news is that antibodies can kill chemoresistant cells that are out of theradiation field. Antibodies are systemic.

So, to make this long explanation really short. If one neuroblastoma cell was left in your child's body, if that cell was resistant to chemotherapy (likely) and if that cell was hiding somewhere outside of the radiation field then antibodies could kill that cell.

Antibodies are another opportunity to kill those hidden neuroblastoma cells that we can not see.

They aren't the silver bullet. They aren't the cure for neuroblastoma.

They are a tool and in one very unmedically trained father's mind a very worthwhile investment.

There are no guarantees and no promises, just another opportunity to try to defeat the monster.

It is for these reasons that, if we had to put Sydney through it all over again, we would do it in a heartbeat.

They are one tool in our super purpose toolbelt.

Pain in the Neck - literally

I can't move my head and it hurts to type. I know that really does sound pitiful, doesn't it? I feel like such a wuss. Regardless, I slept funny and my neck is making it very painful to type. I will have to find another way to keep myself busy today. That just might be the perfect excuse to dig through the pile of research that is sitting on my desk. There is so much I have wanted to read and now I have carte blanche to do it. Awesome!

I did want to give everyone a brief update on all of our wounded Dungan's. Grammie appears to be on the mend. Lynley and I visited her yesterday. She was down right perky. I think she has clearly made the turn and has improved tremendously. I expect to see her out of the hospital in the next few days. Graham too has weathered his toeing quite well. Although it still hurts to look at his toe he seems to be doing pretty well. He has a slight limp but seems to be able to get around pretty well. He even walked through the mall and played in the play area yesterday morning. The afternoon found him madly racing his big wheel up and down the block. All in all, it was far better than I had anticipated.

Everyone else seems to be doing pretty well. We have scheduled Sydney for her next MRI on January 9th so until then we are hoping for smoothe sailing. The kids are all home from school for the next week and, conveniently, even Lynley has had off. I, on the other hand, continue to work through the holiday.

There is no rest for purpose - even if I can't type.

A Christmas of Ups and Downs

Good morning! It feels like I have not written in my diary forever. It has been a crazy few days. First and foremost I should let you know that Christmas went off spectacularly - even for our resident Jewish school girl. The kids could not have been happier with their gifts and have had a great few days of good whether to enjoy them outside. When outside was not good enough we have all enjoyed playing Wii fit inside. For some reason everyone takes great joy in watching me play the Hula Hoop game. Hey, I might look funny but I am the only one in this household with a 4 star rating. Jealousy will get them nowhere.

Unfortunately, we have also spent some significant time up at the hospital. It turns out that Grammy (my grandmother and the kids great grandmother) has developed pneumonia. It all start off innocently enough with a cough during the first few days of her visit and just got progressively worse. After putting it off for as long as we could we finally gave in to the hospital. Although her time their has not been particularly restful she, for the first time yesterday, was beginning to show some improvement. We are hopeful that she may be discharged in the next few days. Pneumonia can be ugly so we are obviously happy that she seems to be responding so well.

Finally, last night we had an accident around the house. Get ready to cringe.

While Lynley's parents are visiting all of the twerplets are sleeping in the same room. This usually leads to a fair amount of giggling before bed time. It is just like a sleep over and the kiddos just can't seem to get over the excitement of going to bed. It usually takes a few trips to their room to get them all settled and asleep. Well, last night, as I was going to check on them for the last time I opened the door. The problem is that Graham was standing right behind the door. Somehow his toe got caught between the bottom of the door and and the floor. The action bent back the majority of his big toe nail upon itself and left a bloody mess. I called for help down stairs and scooped him up into my arms. It was painful to look at. We made it down to the kitchen sink where Lynley (and I must give her credit here) went to work on Graham's toe. As always she was calm and collected. Once we got Graham under control I made my way back upstairs where the girls were still screaming in horror. I let them know that Graham would be okay but they would not believe me until they saw him again. Within about 10 minutes Lynley was carrying him back up the stairs. His foot was completely bandaged and his tears were drying up. Graham handled it like a champ. He did better than I. He will eventually lose his nail and I am quite sure that he will have some difficulty walking on it for the next few days but if we can ward off any infection I am quite sure we can get through this without too much more drama.

Well, I know this was not necessarily the post Christmas summary that you were probably looking for but at least we are all accounted for. It could have been much worse.

For now, I am back to my purpii.

A sudden enveloping reality

Good morning! Merry Christmas Eve. This week has been full of hustle and bustle. With three kids and a wife at home for the holidays it has been crazy around the house. Every time that I go from working quietly day after day in my quiet office at home to working amidst the chaos, I forget how much I love having everyone around. For Ainsley there is lots of cuddling. For Graham there is lots of tattling, for Sydney there is lots of asking me how to do some of the secret things on Mario Kart Wii, and for Lynley, well, there are lots of dirty looks as I quietly and happily sit on the couch tapping away at the keyboard. This, of course, happens as she tries to clean the house, make lunch, and watch three kiddos all at the same time. I have tried to explain to her that this is the gift of that nice cushy job she has with all of the vacation time. She doesn't appreciate that very much.

I have discovered that I am a bit under the weather. I have a stuffy nose and a pretty good headache. This is also complicated by whatever the side effect is that makes one sound ike Elmer Fudd. My timing certainly isn't very good but I am hopeful that it will only last a day or two. I would make a couple of cracks about Santa Claus but with my new eager beaver reader around the house I don't want to give anything away.

I bolted out of bed this morning with a singular realization in my head. I don't recall exactly where the sudden thought came from but it went through me like a shock. I felt like I did a little over five years ago - almost to the day. I felt that shallow breathing and the intense fear of the condition. It is as if I almost went back in time. I don't know exactly how to describe the sensation but it was almost as memorable as the actual event. I felt as though I was reliving the whole experience of transplant with Sydney when I suddenly realized we were five years from that date. I felt intense joy and relief. Although it was only 2:00 AM in the morning I felt I just had to go give her a kiss on the forehead and share that with her. I let her sleep but as I looked down on her I had never felt so warm an at peace. I realized I lucky we have thus far been. For me, it was a Christmas gift early.

Thank you.

Thank you for my purpose.

A weekend of debauchery

Good morning! Wow, what a weekend. I feel like such an utterly horrible Daddy. I did one of two things this weekend. I either partied (can I even say that as a 37 year old adult) with my wife or I worked myself to the bone. Bad, bad, bad daddy. The good news is that the kids had a terrific weekend.

It all started on Friday morning. I was talking to Lizzie (Hayden's mom) on the phone. Hayden has completed his stem cell transplant with flying colors and has found himself back at home for the last 3 or 4 weeks. We were talking about how much Graham and Hayden missed seeing each other. After a few minutes she invited Graham over to spend the night with Hayden and their family. Graham was absolutely and utterly excited. For obvious reasons, we did have some concerns about Hayden. After all, he was still not quite that far out from transplant. We talked about it and decided that Graham was healthy enough to spend some quality time with Hayden. We cleaned the boy up and gave him strict instruction. We told him to be his absolute cleanest. We reminded him to wash hands and to not share cups or eating utensils. Lynley also let him know that he could not sleep in the same bed as Hayden. But, assuming all of these rules were observed, he could have his first sleep over ever with Hayden.

When they arrived to pick up the Grahamster, Madison (Hayden's older sister and Sydney's best friend from when she was at Arborlawn) came along. Within minutes Sydney had been invited and we now had 2 cuckoos flying away from the cuckoo's nest. They were off to an afternoon and evening of kid mayhem and good clean fun.

I did not know what to do.

I only had one kiddo and within the next hour she had plans to spend the night at DeeDees.

Did you know that this was the first time in 7.5 years that Lynley and I have spent a night together without any kiddos? This was a momentous occasion.

Lynley and I were kiddofree for the first time ever.

That evening she and I had plans with 4 other couples for a Christmas party on the town. We went out for dinner and drinks and had an incredible time. However, by about 10:00 PM we were back to our eerily quite home. Ironically at about 10:30 (2.5 hours past our kiddos normal bed time) we received a call from Sydney. She was just calling to give us an update before going to sleep. Apparently she had fallen while take a bath and received a pretty good bruise on her cheek. It wasn't the prettiest thing but she seemed to have recovered. She was proud to tell Mommy that "Naw, I am fine." Graham, too, had an incident but that was probably more our doing than his. As Graham was going to bed he insisted that he sleep on the floor because he did not want to risk getting Hayden sick. From what I understand he threw a pretty sizable fit. He was just trying to carry out hiss mother's orders and, in the end, I think they finally came to an agreement. Within a minute of the conversation ending Graham was fast asleep.

Tired, tired little boy.

The morning was apparently filled with more kiddo fun at their house. By the time that we got back ahold of them on Saturday at noon they had been completely and utterly re-worn out. They could not stop talking about how much fun they had. They chattered all the way home.

A good nap was had by all.

On Saturday afternoon and evening we had The Ridglea Round Up. Once again, I was up well beyond my bedtime and without my kiddos who were home with a babysitter. None the less, another good time was had. I want to personally thank everyone who showed up for the concert. The turnout was pretty good, especially considering that this was also the night of the Dallas Cowboys last home game and another country music concert was in full swing across town. I am so appreciative of Danny Wood and all of the bands that came together to make the night such a great success. I have a lot of thank you notes to write.

Sunday morning I got to watch cartoons with the kiddos and fill my face with sugary donuts at Krispy Kreme. It was a pure delight.

I was such a glutton.

Unfortunately that was followed by hours behind a computer as I ticked and tied marketing expenses and prepared for an important board meeting. I would take an occasional break to fold laundry or help Sydney unlock another cart on the Mario Cart Wii but, for the most part, I was a very bad daddy sitting over in the corner with my nose to the grindstone. Thankfully by 9:30 PM I was done with my board meeting and I was finally able to sneak in and give my sleeping kiddos a kiss on their sleeping foreheads.

Thank goodness this is a short week.

I miss my family.

Life or death.

Good morning! Today is a two-parter. First, I want to remind everyone about the Ridglea Round Up on Saturday night. Please come out and enjoy some great music. Just by being there you are supporting childhood cancer. These bands are all donating their time to try to make a difference in our lives. Let's show them our support. More information can be found at http://www.TheRidgleaRoundUp.com. Please join us on Saturday night.

Last night was very interesting. As this year has gone by, Sydney has learned to read better and better. There is almost nothing that she can't pick up and gain an understanding of. This can be an issue when the majority of the paraphernalia that exists on my desk is neuroblastoma in nature. This is especially a problem when the majority of the marketing material that I have there focuses on the gruesome facts of neuroblastoma. This is even true in the cookbook.

Last night Sydney picked up the new cookbook and began reading. As would any child, she wanted to read anything that was near her picture. This meant that she read her story. Although she has lived every inch of it and more I don't think she ever grasped what it all meant. She knew that she had neuroblastoma. She knew that it was a horrible cancer. She knows that she is a survivor. She know that it was the medicines that she received that caused her hearing loss and thin hair. She knows that the scar across her belly is from where they took the tumor out. Up to this point in time it has always been very matter of fact for her. We have always been upfront and honest with her but have obviously withheld some of the most gruesome of facts (such as survival, etc.) from her. We felt that was an unnecessary burden she did not need at her young age. Additionally, until this point in time we did not feel that she could necessarily process the information.

Well, last night, after reading her story and some of the facts about neuroblastoma in the cookbook it began to hit home for her. On some level she began to understand the real facts and how lucky and special she was. We ended up spending about 30 minutes with her answering questions and talking about it. It wasn't an easy discussion. Some questions were benign like, "How did the cancer make it so I could not walk?" or "Was the tumor as big as my tummy as big as my scar?" Other questions needed to be handled far more delicately. Like, "Do many kids with my cancer go to heaven?" We have never hid anything from her and have always been open and honest but this was one of the more difficult times we have had. She has begun to truly realize that when she hears or reads "life or death" that it truly means "life or death." It is a burden I which she never had to carry.

It is one that I wanted to carry for her forever.

That is my purpose.

Not exactly what I planned

This morning I have a helper by my side. For some reason at 5:21 AM Ainsley though it would be a good time to wake up and come downstairs. You see, starting at about 4:00 AM my office is the couch in the den. I have a system. I get a cup of coffee. I drag an extension cord across the floor. I grab my laptop, my iPhone, and my USB memory key. I prop a pillow behind my back. I snuggle into a large yellow comforter and get to work. Yes, I know. I lead a hard life.

The problem with this "office" set up is that when every a child comes down stairs they see this as a snuggly spot - not a worky spot. So, when Ainsley came down stairs she made a beeline right over to me and made her demand. "Move over. I wanna snuggle wit you." How could I resist? So, here I sit next to a very warm little snuggler with "Johnny and the Sprites" on the Disney channel in the background. It isn't exactly what I planned as I sipped my coffee and began going through hoards of email this morning but I certainly won't complain.

I am pretty lucky.

I have purpose after all.

Just don't have time.

Good morning! Well, I am sad to report that my computer is still on the fritz. I am using it in "safe mode" but to be honest there is nothing that feels safe about it. After fighting with it for a couple of days I have decided that I am left no option but to wipe it and start from scratch. At the very least, I am disappointed with Vista. The good news is that things around the Dungan household seem to be going extremely well. It is amazing what the threat of a lump of coal in your stocking from Santa can do to the overall demeanor of kiddos. I love this time of year. Christmas is good!

This is, however, a chaotic time of year. With two ongoing events for Lunch for Life and a benefit concert I have found myself running from one place to another. Don't get me wrong, I love the busyness. I just hope that we are as successful as we need to be given the state of the economy. I have seen an abrupt halt to corporate support. From a business perspective, I can't say that I blame them. However, from the perspective of trying to save kids lives it leaves me feeling that much more desperate. I have very real fears about funding research this year. To be honest, from what I see, there will be significantly less research funding this coming year than the last. If things don't improve drastically there will be fewer kids on trial and fewer options for kids. To me, that is the saddest reality of this economic meltdown. Given some time the economy will recover, banks will recover, automakers will recover and everything will go on as normal. Unfortunately, the kids have no time to recover.

They need help now and they need it more than ever.

Unfortunately, the future of purpose is in question.

The Round Up

Good Morning! Well, I am a little late this morning. My laptop has gone off of the deep end. So, I am having to do this update the old fashioned way - telepathy. Regardless, today I wanted to talk about something that was way too important to put off until my computer was up and running. You may remember from a few months ago when I talked about a concert that was benefiting the Children's Neuroblastoma Cancer Foundation. Unfortunately, with the late notice the turnout was small - very small. The good news was that the event was still incredible. Personally, I have never been a huge fan of country music. However, I had more fun at that concert than I can remember having in a very, very long time. The music was simply awesome and to see so many great artists and performers come out to support childhood cancer and neuroblastoma was awe inspiring. It was an incredible event - even given the lackluster turnout. And better yet, they still made a generous donation.

That did not stop them. That just motivated them to try and do more. This time, they have pulled out all of the stops. They have gotten 95.9 The Ranch involved and there are so many bands playing that I can not even begin to list them here. This is a big deal and they are doing it all for childhood cancer.

Everyone is always asking for a chance to help kids with neuroblastoma.

This is it!

What: The Ridglea Round Up (theridglearoundup.com)
Where: The Ridglea Theater, Fort Worth, TX
When: Saturday, December 20, 2008 (4:00 PM - ???)
Tickets available at the door (21 and up $10, 20 and younger $13)

So, I am asking, begging, pleading (whatever appeals to you most) to come out and support the bands and the Children's Neuroblastoma Cancer Foundation. I promise a great time. We need to fill the place. We need to show them that the childhood cancer community appreciates all of their hard work.

Please make plans to come out and support us this weekend.

This is purpose for all.

For the record - neuroblastoma is not rare

Yesterday afternoon I had another opportunity to be on television to talk about neuroblastoma. Over the years I have done many of these interviews and I have kind of developed a picture in my mind of key points that need to get out. It is a simple plan really. I begin by talking about our personal story. It could be any one's story. The point is to make it real - to show that perfect, wonderful, normal kiddos get cancer - to show that it can effect anyone - to show the devastating effect it has on a family. Everyone that knows me knows that I could go on with this subject for hours but, the trick seems to be when you need to make this emotional appeal in a minute or less. With a little practice it is possible.

The next thing I like to talk about is prevalence of childhood cancer. This is my biggest frustration with just so much neuroblastoma messaging. For some reason everyone likes to talk about how "rare" neuroblastoma and pediatric cancer are. They want to focus on all types of numerical statistics that show the "rarity" of pediatric cancer. My point of view? Remove the word rare from the list of acceptible adjectives. This messaging drives me nuts. Childhood cancer is the number one disease killer of children in the US, incidence is growing every year, and neuroblastoma is the most common cancer in infancy. Period. It is this one sentence (or run on of 3) that makes the point that childhood cancer is a huge issue for Americans. It illustrates that the problem is much larger than my one sad story. It effects everyone with a child or a grandchild. Heck, it effects everyone with a functional heart.

With this I have now established an emotional appeal and shown that the problem is prevalent throughout the US.

The next thing I always focus on is the problem. The problem is funding - pure and simple. I don't get more complicated than that. It is not hard to find some compelling statistics. If you have read my diary or have seen me speak you are probably aware that I consistently use 2 approaches to get this point across. For me, they have all worked pretty well.

1. In 2007 the NCI's Federal annual budget for cancer research is 4.8 billion. The NCI spent over $570 million on breast cancer, almost $300 million on prostate cancer and less than $172 million on all 12 major classes of childhood cancer. Yes, that is only $172 million that has to be shared among almost 90 different childhood cancers.
2. Cancer is a more common killer of children than aids, cystic fibrosis, muscular dystrophy, and asthma - combined? This is in direct contrast to the fact that we spend almost $600,000.00 research dollars for each child affected with aids and less than $20,000 for each child affected with cancer.

I think these 2 points do an excellent job of showing the unfairness of the funding problem. It illustrates very clearly that childhood cancer is underfunded and needs support. Put all together I have found this methodology to be short, to the point, and tremendously effective. It creates an emotional personal appeal that demonstrates an injustice which effects a large population. All that is left is to give the viewers and listeners a call to action.

So ,why do I post this information this morning? Well, for two reasons. One, I am often asked by families and people that want to speak on behalf of children with cancer - "What do I say?" I continually see posts and receive emails asking for statistics and guidance. For that reason, I am not a media professional but this is what I have found that works for me. So, I thought I would put it out there. If anyone has anything that they think would work out better I would love to hear from them.

The second reason I am writing this is out of pure frustration. As I mentioned last night, I had a TV interview and the very first thing that the interviewer came out with was - "So, neuroblastoma is a rare cancer that only effects 650 children a year..." Unfortunately I did not get to address that particular question so, as you might expect, I left completely and utterly frustrated. It makes me wonder. If that is the message that gets out, do we do more damage than good?

I've got the purpose. I just have to convince everyone else to get it to.

Lunch for Life Cookbooks Fund Research

This morning as I was going through all of the Lunch for Life Cookbook orders I realized that I had neglected to mention the fact that the new Lunch for Life Cookbooks were available. I know that I have had the little "Twerp Cookbook" widget on my website for a few weeks but it still lacked a grand announcement. It deserves better than that.

So, here you go.

Lights, Camera, Action!

The 2nd Edition of the Lunch for Life Cookbook is now available!

How was that? Well, for those of you that do not know what the Lunch for Life Cookbook is about, here is an explanation. Every year we collect recipes from families of children with neuroblastoma. Each recipe is submitted in honor or memory of a child with neuroblastoma. They are our very best recipes. In the end, we work tirelessly to put together this book. It is then sold and the proceeds are used to help fund important neuroblastoma research. The great news is that Print Pointe, our printer, cuts us an incredible deal on the printing which only helps to fund more research.

So far they have printed roughly 1500. We have sold around 800. That means I need to sell about 700 between now and Christmas. After all, it is the perfect Christmas gift. Have you purchased all of your Christmas gifts yet? Do you know of someone that would love a cookbook under their tree? Well, if so, boy do I have a deal for you.

Let's see how many we can sell and how much research we can fund today.

You can order your cookbooks here:
https://www.lunchforlife.org/cookbook_secure.aspx

Purpose comes in many forms!

Parental Guilt

Okay, so I have been handling this one with velvet gloves. But, it is time I come clean. I am a strictitarian. I don't know if that is really a genuine Webster certified word but I think it pretty much sums up my disciplinary philosophy when it comes to kiddos. I am strict and frankly I expect immediate attention whenever I ask something of my children. Am I strict about everything? No! Elbows are occasionally on the table at dinner time. I let them get away without saying "Yes, mam" or "No Sir" too often. And many times, I just let them run around and scream like a wild hoard of twerps. After all, they are kids. They need to be kids. When it comes to being strict, I am strict about them listening to me. What I say goes. When I say jump, I expect them to say "How High?" And, darn it, someone in this household is going to listen to me;)

I believe that kids should be given room to be kids - to laugh and joke, to run and play, to be chaotic. After all, that is half the fun of being kids. However, they have to learn right from wrong, safe from unsafe, and responsibility. They need to learn when to be kids and when to be little ladies and gentleman. Perhaps, I am expecting too much for Ainsley and Graham, but for Sydney I expect her to know the difference. She is 7. She is of age. And, I expect her to listen when I tell her to do something. This does not always go so well. And sometimes ends in a spanking.

I think a parent, at least me, feels guilt for spanking a child. Although I don't do it very often it always leaves a bad taste in my mouth. It works. Oh, it works great! The problem is that I always feel that I could have achieved the same goal by using another, less lazy and easy method. I feel I could have been a better parent.

I don't like it.

Sometimes though, after screaming temper tantrums, slammed doors, a rash of timeouts and everything else I could think of, it ends in a spanking. Again, the spanking works but, what could I have done differently.

I should probably mention that I am also dealing with some cancer guilt here as well.

It pangs my heart every time. I feel like I done everything I possibly could to keep her in this world. I begged. I pleaded. I prayed. We fought neuroblastoma for God's sake. And then, I disrespect what I have been given by giving a spanking.

See, I told you I had guilt issues.

But how, as a parent, do I do better? When it really hits the fan and the child really needs a spanking, what do you do? When all else has failed? When time has run out? When they just have to be good right now? What do you do?

Being a parent isn't easy.

But I couldn't think of it any other way.

We will get through it.

It is my purpose.

A gaggle of ornament counters

Good morning! Everyone made it back to the grind yesterday. This was one of those weekends that I think everyone was thankful to get back to work and school just to slow down a bit. With 134 email in my inbox on Monday morning I can't say that it was relaxing but I am happy to report that I got through most of them. It is that time of year where the email seems to flow, I am not complaining. To me it is a sign that people are thinking about "Lunch for Life" and neuroblastoma and how they can make a difference. I can make all of the time in the world for that.

Sydney was ecstatic to see her Giving Tree with a present under it. Of course, the first people that she was interested in sharing the news with were her brother and sister. Although they were happy for Sydney it did not take them long to wonder where their trees were. That was an interesting moment for me. I had never thought about that side of Lunch for Life. We explained that the trees were for children with neuroblastoma and they seemed to get that but still did not think it was totally fair. What irony? I quickly told them about the chance to win the Disney Dream Vacation and that the whole family was eligible for that. They quickly forgot about Sydney's present and more interested in how many ornaments there were. 512 is a big concept for a 3 and 4 year old but they have quickly grasped the idea that more was better. As of now they can't wait to get home to look at the tree again. They are already scheming.

Well, I am off. Ainsley is in a tizzy this morning. She has spent most of her morning in timeout and has lost her pink blanky. It is not a pretty picture. But, this is what happens when you go and wake up your brother and sister right after you were told not to. Obstinate one than one. At times she is lucky that she is so darn cute.

I am off to another busy day of purpose.

I snuck down to Houston

Okay, so Friday morning I was missing in action. There was so much going on last week that I completely forgot to mention that I would be in Houston on Friday. So at about 5:00 AM, I had my foot on the pedal, David Ramsey on the iPod, and I was on my way. For obvious reasons this left me little time to write in my diary. The good news was that my drive to Houston was a smooth one. I was a little curious to see what I would find after a few months since the hurricane passed through. As I got closer, it became more and more obvious. At first, I noticed the signs. Most were just hollow shells. You could see right through them. For the most part the others were all brand new. It was obvious that they had been replaced. The other thing that I began to notice very quickly was the number of blue tarps on roofs. I don't know who manufactures blue tarps but I can tell you for sure that this was a banner year. In some areas every house seemed to have a blue tarp. The others all seemed to be mostly brand new and you could see new sections of roof on many of the buildings. The other odd thing that I noticed was that many of the roofs up and down I-45 were damaged on their north facing sides. It took a minute for that to register in my mind. It did not take long to spot things that were completely out of the ordinary. There were several metal light poles that had been bent in the high winds, metal roofs that appeared to be bent back upon themselves, and trees snapped mid shaft. With all of this, it was impressive to see the amount of recovery, however, it was quite evident that there is still a long way to go.

So, one of the reasons I was on my way to Houston was for a bake sale. Seems like a long way to go for a bake sale doesn't it? Well, it was and it wasn't. Many of the families in Houston put together a bake sale to raise funds for the CNCF. This was no ordinary bake sale. It was humongous. For those of you familiar with the bridge between the clinic and hospital buildings at TXCCC the bake sale filled tables from one end of the bridge to the other. I have never seen so much food. It was the perfect location as it received heavy traffic all day long. It was also conveniently located on the way to the cafeteria/food court so we had a very heavy lunch crowd. In all, there must have been about 10 families of children with neuroblastoma helping out but I am quite sure that there were many more in the background baking away. By about 3:00 PM they had raised almost $2700 for the CNCF.

Thankfully, I also had the time to meet with Dr. Russell, Dr. Louis and a few others from the research department. However, I will need to go back at the beginning of next year to spend some more time down there.

The evening was filled with the First Annual Neuroblastoma Christmas Party. They have a group of about 50 neuroblastoma families down in Houston. It is a great group and one that is very interested in creating some significant change. They are very active with the CNCF and we are all hoping that we can all do significantly more. It was very good to see everyone again and I even had the pleasure of meeting a few that I had never met before. The Scazny's put on a first class Christmas spread. It was great to see so many kiddos milling around. I know I am biased but there is something special about families of children with neuroblastoma. You can see it in their eyes.

By early Saturday morning I had made my way back to Fort Worth. I was then faced with a mountain of Christmas shopping, decorating, honey dos, and laundry.

I didn't finish.

It will be a busy week of purpose, etc.

Happy Child, Mad Wife, and I Just Keep Plugging Along

I can't tell you how excited Sydney was yesterday to come home and find almost 400 ornaments on her Lunch for Life Giving Tree. That was quite a large one day jump. I know of many others who also sent in checks whose names and ornaments are still not up in the tree. Thank you so much for your help in making such a big change in one day. We still have a ways to go. She will not rest until presents begin to appear under her tree. But ,I can tell you, she could not be happier with all of the growth on her tree.

I, on the other hand, am thankful for the lunches because it means more research. It means we are closer to a cure. With just the donations made on Sydney's tree we can get one child on trial through the NANT that would otherwise not be able to. That means another child can receive cutting edge MIBG treatment, IV Fenretinide, UltraTrace, BSO/Melphalan, CEP-701, or one of the other exciting and promising drug combinations that will be coming out in the next few weeks. That is real. Those are real options that a child would not have had if it were not for the lunches on Sydney's tree. And yet, that is just one example of how those lunches will be used. Thank you. And I don't know what child will benefit. But, I can guarantee you that sometime this year a child will be put on trial (that would have otherwise been turned away) and the family will never know that the only reason it was available for their child was because of those lunches. But it happened. And it happened here. Thank you.

I have received several emails of concern regarding Lynley. I thank you for that as well. She has been to the doctor and unfortunately, at this point, they still can't find anything wrong with her. That is frustrating. Although the pains have started to subside the original issues that sent her through all of these tests still remain. Medication seems to be helping with the symptoms but it is still not under control and worse, although she has been through a battery of tests, we are no closer to a diagnosis. We have ruled out a ton of causes but we still do not have an answer. That is still concerning given that her condition is certainly potentially life threatening. We continue to search for answers.

Finally, twerps are great! But isn't that how they should always be? Full of energy, excitement and, well, twerpishness.

I am off to purpose.

The Giving Tree

After reading yesterday's post and discussing it with Sydney I received a stern lecture. You see, I get all wrapped up in hating the fact that neuroblastoma research is so terribly underfunded and I forget a very valuable part of Lunch for Life. In fact, to the kiddos, I may be forgetting the very most important part - The Giving Trees.

Each donation made to Lunch for Life in a child's name earns that child ornaments on their tree. They receive one ornament for each increment of five dollars. So, if you donate $10 the child will receive 2 ornaments. If you donate $50 the child will receive 10 ornaments. The really neat thing about these ornaments is that once they fill up the child's Giving Tree presents magically appear under their tree. These presents come in the form of real presents which are sent to the child or their family.

Sydney was very clear to point out that there was not a present under her tree yet.

Regardless, the kids absolutely love seeing the ornaments appear under their trees and, from what I hear, they have an absolute blast receiving the gifts as well.

It does not stop there.

The children do not only receive ornaments for every $5 donated in their names. They also receive 1 chance to win the Walt Disney Dream Vacation for their family. Yes, at noon CST on December 25, 2008 we have a drawing. We take all the entries that we have received all year and we draw a name out of the hat. I then get the pure pleasure of contacting that family to let them know that they have just one the dream vacation.

Sydney also thinks this is pretty neat.

Isn't that great? What a great trade for some lunch money?

Now, if you want to get real fancy you can actually double the amount of ornaments that people put on a child's tree and double the number of entries that they receive for the dream vacation.

You see, when you make your donation you will receive a receipt. On that receipt is a "Giving Tree Code." Now, your job is to get someone to make a donation using that Giving Tree Code. The use of that Giving Tree Code will double the number of ornaments and the number of entries.

1. Email or call a friend
2. Ask them to donate their lunch money using the Giving Tree Code you just received.
3. They will receive double the amount of ornaments on the child's tree for their donation and double the entries for the dream vacation.

See, it is that easy.

Now, onto my problems.

Sydney is pretty excited about her tree. Will you help me fill it up?

• Please go to https://www.lunchforlife.org/Donate.aspx
• Make a donation using Giving Tree Code 30648
• Please consider being a Lunch a Month Member.

You can view Sydney's tree here: http://www.lunchforlife.org/family/givingtree.aspx?cid=117

Thank you, thank you, thank you for your support.

There you go - a pile of purpose for just the cost of lunch.

It isn't getting any better!

It has been five years since the beginning of Lunch for Life. It started out very simply. It was a desperate act. At that point we were 3 months into Sydney's treatment of stage IV neuroblastoma. I was scared, I was mad and I was frustrated.

I was frustrated because childhood cancer was the leading cause of death by disease in children. I was frustrated because neuroblastoma was the most common cancer found in infants. I was also frustrated because neuroblastoma was one of the deadliest of all childhood cancers.

Insult was added to injury when I realized that the NCI spent over $550 million on breast cancer, over $320 million on prostate cancer and less than $140 million on all 12 major classes of childhood cancer. Yes, that is only $140 million that had to be shared among almost 90 different childhood cancers.

Look at those numbers again.

That is how we fund this nation's number 1 killer of children by disease.

The disparity is not only in cancer. Did you know that cancer is a more common killer of children than aids, cystic fibrosis, muscular dystrophy, and asthma - combined? This is in direct contrast to the fact that we spend almost $600,000.00 research dollars for each child affected with aids and less than $20,000 for each child affected with cancer.

It is these huge discrepancies that beg me to want to make a difference. I want to scream it from the roof tops. I want everyone in the world to know these facts.

I want to level the playing field.

I want it to be OUR time.

For once,

• instead of sending trillions of dollars overseas for war
• instead of sending billions of dollars over to Africa to fight aids
• instead of sending billions of dollars half way around the world to aid tsunami victims

I want it to be our time. I want it to be the time when Americans stood up for the number 1 cause of death by disease in Americas children. For once, I want our children to be the priority.

Today the economy is crashing. Banks are being bailed out for hundreds of billions of dollars and other industries are lining up to get their checks as well.

Once again, it won't be our time.

Worse yet, with the change in the economy, corporate giving and support are drying up. The big dollars from corporate America that we count on so much to help fund research are going, going - gone.

That leaves us. That leaves you and I and our lunch money. That is the last hope for these children and the last hope for a cure.

We need your help. We need you to write email. We need you to tell your friends. We need you to post on your blogs.

We need people to donate their lunches and we need them to do it with more fervor than ever before. If you gave a lunch last year I ask you to do the same and if you can afford it I beg you to do more. Do a lunch a month. Make a difference. It is only lunch. Yet, it means life for these children.

Promising research is sitting on the shelves. It will remain there unless we raise enough money to get it into these children.

There will be less trials and less options available to our children than there were last year if we don't stand up and make a difference.

Less children will receive life saving therapies unless we make a difference right now.

We need your help.

Please go to http://www.LunchforLife.org and donate your lunch.

Then, please ask all of your friends to do the same.

Your lunches and your words will save lives.

Today, everyone has a purpose.

The Return to Reality

Good morning! The Dungan's survived the hay hole and their journey back home to Texas. Yes, we have accomplished a lot in the last few days. The trip to the McCurdy farm was as fun as always. The kiddos rode horses, chased the pigs, and fed the goats. Oddly enough, the bulk of their enjoyment was still found in the hay lofts above the barn.

City twerps?!?

The important point is that the kiddos did have a tremendous time. They are already talking about their next visit. Graham was as charming as ever. He delighted in telling everyone what he asked for from Santa. Frankly, it is tough for me to even mention. The boy doesn't want a car or a sword. He hasn't asked for any action figures or even a train.

He wants a flute.

Yes, you heard me. I said a flute. I just don't get it. How can a boy that comes from such hairy, manly and grunting stock want a flute? It just doesn't make sense. It doesn't compute. Regardless, he has been a very good boy this year so I am guessing that Santa will grant him his wish. Soon enough twinkle toes will be whistling in my ear. I imagine this means that I will have to start participating in some 12 step program. I tell you. He is lucky that he is one of my purpii because otherwise it would be a football and helmet without padding. None the less, I love my little Dudely - flute lover or not.

The trip home was pretty uneventful. I am continually amazed at how superbly the kiddos do in the car. It was a long drive but they seemed to take it in stride. In fact, it was probably only in the last hour that we lost one over the cuckoos nest. I am guessing that Ainsley had finally just had enough. She decided to finish off the trip by pestering flute boy. Before we knew it I had a full fledged uproarious giggle fest in the back seat. I could no longer hear the radio due to their outrageous laughter. While normally I probably would have asked them to keep their volume in check, we decided that they certainly deserved some craziness. The laughter was contagious and we all giggled our way home.

Well, I say we all giggled our way home but that is not completely true. Lynley was utterly miserable. She has some health issues of her own that she is battling and the trip home was a low light for her. She has had some ongoing issues that have had her running from one specialist to another. These issues were further complicated last week by a cold. On the way home this was further insulted by some pretty sever pain in her abdomen and back. Truth be told, I am pretty worried about her and the only reason that she is not in the hospital is because I don't make her health decisions. Regardless, she will be meeting with a specialist today and her GP tomorrow so I am hopeful that they will be able to get to the bottom of all of this. Somehow I doubt it but, none the less, I will keep my fingers crossed that she can find some relief.

Today I am back to business. It is that time of year and I am racing to raise as much neuroblastoma research funding as I possibly can. The economy seems to be drying up much of the corporate giving so it is becoming even more important to find people willing to donate their lunches to the cause. Funding is tighter than ever and I have to figure out how to raise $500,000.00 over the next few months or some very promising new therapies will not become available to our children this year, Furthermore, if I can't hit my marks I can pretty much guarantee that fewer children will be able to participate in many existing trials due to the tightening of budgets. It is an unfortunate reality and something that I need to figure out how to stop. It will be a busy holiday season.

Well, enough jabbering. I am off.

Purpose awaits!

The Hay Hole

Well, I have a few moments to type before the twerps make their way downstairs. They are sleeping now but I know full well that their play clocks are ticking. We only have 1 day left in Alabama and they are well aware of it. They will be moving to get in as much as they possibly can today. That is good news as today we are heading out to the farm. You may remember this episode from our last visit. This was a black day in our family. Yes, this is the day that Lynley's Suburban died on the way back from the farm. This marked the end of my dream of getting a new car. Yes, it was this very trip that Lynley leveraged a simple broken axle into a new car for herself. Oh, the memories - back when I used to have dreams of a car with low fuel costs. I guess I can't really complain as the good karma eventually came in my direction in significantly lower gas prices.

So, today! The kiddos can't wait to go to the farm. They have been looking forward to this for weeks. If I told you exactly why, your impression of me might change. In fact, I did not even mention it last time due to the possibility of a misconception. However, given the fact that this is such a major part of their lives, I guess I will just have to say it. The kiddos love the farm because of the "hay hole." Yep, you heard me. They absolutely love the "hay hole" at the farm. They love going in the "hay hole." They love going out of the "hay hole." They love everything about the hay hole. The worst part of this all is the fact that they love talking about the "hay hole."

You see Doc McCurdy keeps bales of hay up in the attic space of his barn. The kids love this because of all of the little hiding spaces that they can find and create. They always seem to create some type of igloo type of structure that keeps them talking all year long. For some reason, they call the front door of this structure the "hay hole". They have no concept of what it sounds like when they call it the "hay hole" but they delight in talking about it no matter where we go. Think about it. Now, I want to remind you. They have no concept of what it sounds like. There is no recognition. The only sign that they get that there could be an issue is the fact that I cringe every time they say it. Let me tell you why. They will tell the check out lady at the grocery story how much they love playing in the hay hole. They will tell the gas station attendant how warm it is in the hay hole. They will tell the waitress at dinner how, if they all scrunch up real tight, they can all fit in the hay hole. Yes, they delight in telling the whole world how much they love playing in the McCurdy hay hole.

It is down right embarrassing. I can't help it.

Sometimes I also can't stop laughing.

Regardless today my purpose will be focused on the hay hole.

Wow, we forgot we weren't just Mom and Dad

Good morning! Well, here we are. Day 3 in Alabama. It has truly been a relaxing time for the Dungan family of five. Lynley and I have even had the opportunity to have a date and visit the movie theater to watch a movie - a movie that was not animated. We watched Quantum of Solace. While it was good (that is our baseline definition of any Bond flick) it was not as good as the last. None the less, it was better than many we had seen before. Look at me. I am gushing. Well, that is what happens when you have an official date with your wife (and without the twerp brethren) to a big person movie. I don't want to make it sound like we made to Alabama just to dump the kiddos but we also got to go on an official grown up date to dinner last night. We went to Outback and enjoyed ourselves immensely. We had steak and alcohol and applied both liberally. Yep, we are like kids at a candy store. Can you feel the love in the air? Now, I don't want to make it sound like the twerplets have not had just as much fun as their adult counterparts. They have been to SciQuest and have had plenty of opportunities to show their stuff as well. In fact, I can tell you that there has not been a night that they have gone to bed anything but exhausted. They have also claimed Lynley's brother, Uncle Jay, as their own toy. He cannot enter the house without being enveloped by a gaggle of Dungans. When he is not at their command he can be found in front of the Wii. The Wii, by the way, has been quite the hit. Everyone has played and their always seems to be some sort of challenge going on.

Finally, there seems to be a case 0f stuffinoseatitis going through the family. With the exception of Sydney on Monday afternoon no one has seemed to slow down even a moment. Sydney did spike a fever but we have not seen hide nor hair of it since. However, the symptoms seem to have gone through all of us. Stuffy noses are universal in the morning and the coughs seem to be fairly constant. As I mentioned though, it has not seemed to slow anyone down for long. In fact, I have cherished the odd minute or so when the kiddos just wanted cuddle for a minute instead of running 24/7. Overall, our visit has been a nearly 100% success and I am looking for to another day of fun.

It is what purpose is all about.

The Griswolds have arrived

The Griswolds have arrived. After two days driving across the South we have finally made it to Alabama. Lynley is ecstatic to be back in the South and, while I believe it is beautiful, I still can't help feeling a little bit like Uncle Daddy. The trip was relatively uneventful. I am happy to say that over the last few months Ainsley has apparently outgrown her habit of the constant jabbering. None the less, she has very definitely grown into the constant questioning. "Are we there yet?" "Are we in Alabama?" "Are we going to see Mimi and Papa?" "Can I have another piece of candy?" "Are we going to the hotel?" "Are we going swimming?" I know, I know. It doesn't seem that bad does it? Well, let me add this twist. It doesn't matter whether you answer her or not. She will continue asking the same question over and over again.. It takes asking a question atleast 20 times to get her to change to a new question. It is completely and utterly odd. As experienced as I am as a loving and caring father it is extremely hard not to get out the duct tape, turn around, and apply liberally.

We brought Lynley's fancy new car. The kids had unlimited movies and music complete with their own headsets. This left Lynley and I to work on important stuff. We decided to take our financial counselor with us. I had secretly purchased David Ramsey's Total Money Makeover and had stored it on my iPhone. I had used the rest of the duct tape to tape Lynley down so she had to listen to it. It was the perfect scenario. Wife listenung to information on spending less money and kids happily watching a movie in the back seat. Well, I was foiled. Every odd minute Lynley complained that Dave Ramsey was too negative and every even minute Ainsley would ask if we were going to a hotel. The best use of the duct tape would have been to tape socks to my ears. Regardless of these obstacles, I kept my cheery attitude amidst all of the misbehavior and whining from my eldest and youngest females. Graham, Sydney, and I travelled just fine and have a new found appreciation for never using credit cards.

Last night left us in Little Rock. Lynley had found a hotel with a heated indoor swimming pool. While I would have enjoyed it more had it not been the host hotel for the Arkansas State PeeWee All Star Championship, the kids seemed to enjoy themselves immensely. I mistakenly decided to sleep on the pullout couch bed and Sydney on the floor. (Nobody wanted to sleep with Ainsley - where spinning like a top and a slap in the face or elbow square between the shoulders is guaranteed every 10 minutes or so.) Next time we will throw Ainsley on the couch and sleep together on her bed. None the less after another 5 or 6 uneventful hours the next morning on the road we made it safely to Alabama.

We are happy to be here. A little wiser but mostly just needing a good night's rest.

Purpose has arrived.

A Gentle Response to Your Suggestions

So, after yesterday's post I received several messages and emails. All of which were suggestive of the same solution - another Dunganlet. In response to these suggestions I considered allowing a guest scribe (my blushing bride) to author my blog for the first time in the history of Dad's Diary. It did not take long before I realized there were not enough punctuation marks to cover up all of the expletives that were necessary for her to adequately express her feelings on this topic. Additionally I felt that her descriptive adjectives might possibly be too colorful for my otherwise family friendly literary atmosphere. So, in response to your wonderfully helpful suggestions, I have edited down a slim version of her response for your reading pleasure.

HELL NO!

With loving purpose,

Your humble author.

The Awesome Insanity of Three

I am happy to report that every one's pants appeared to stay up yesterday. Their were no yellow stickers and no scoldings. Well, I can't say there were no scoldings but their were none related to pantsings or other schoolish misbehavior. I am embarrassed to admit it but there are plenty of scoldings that seem to go on in any given day in the Dungan household and the irony is that the majority of those scoldings come from one of the children tattling on the other. Graham and Ainsley are the worst but Sydney is certainly on angel either. I am just amazed at their dedication to getting the other one in trouble. The most shocking thing about this is that the tattler generally gets punished as well. Regardless, this ritual of eventual self abuse is running rampant in the brains of our little Dungan twerplets.

Why are siblings so mean to each other? Why do they fight so much? What can we do about it?

These are three questions that run through my head routinely. I just don't get their fighting. The good news is that this is in complete contradiction to their behavior when they are in groups of two. When my children are in groups of two they are the most loving, supportive, and protective family units you can imagine. It is a "love in" that will bring you to tears in admiration of what a fine job we have done raising such wonderfully compassionate, kind, and well-behaved kids. Add a third Dunganlet into the mix and you have concocted the most vile, hateful, and self-destructing unit imaginable. The mixture explodes almost as soon as it is constructed. It is like adding fire to dynamite.

Sure, you have seen pictures of them playing happily together on the tramplene or up in the trees. Okay, so I can admit that it does not seem to happen when they are playing outside. But, you stick them inside, then watch out. Explosions will occur. It seems that every 2 minutes I hear a scream and the pitter patter of little feet. The reporter is their to tell me what the other has done.

What do I do?

I punish them all. The official charge is "Not playing nicely together."

You would think this would work. They all got punished. Surely, they would not do it again.

2 minutes later - aaaaaaahhhh - pitter patter, pitter patter - "Daddy!".

Unbelievable!

Got any ideas?

I have plenty of purpose but no clue.

Drive By Pantsing

I am often very proud of my kiddos for their creativity. Then again, there are also days when I think - "Where did that come from?" And then, there are definitely those days when I know exactly where it came from. Yesterday was one of those days. I had to pickup the kiddos a little early from school due to a dentist appointment. Graham was out playing with his friends on the playground. He certainly seemed happy enough and he was indeed having a blast. When he saw me he flashed his signature smile in my direction. and bolted towards me. We met at his backpack which was laying on the floor. His first words were not, "Hi Dad!" They were, "I got a yellow sticker." I asked him what he did.

Apparently, Graham was on his way in from recess today when he was trying to get another little boys attention. It is interesting to note that this other little boy is much larger than Graham. The boy would not talk to Graham. So, in an act to get his attention Graham decided that it would be a good idea to pull the little boys pants down to his ankles.

Yep, you heard me. He pulled the boys pants down.

I asked Graham why he did it and he simply said "He wouldn't talk to me." The report from the teacher said "I had no idea why he did it." I, of course, told Graham what I bad choice this was. I gave him a mean daddy look and I let him know that he would be punished. I told him I was very disappointed in him and I did this all without cracking a smile. It is not that I want Graham to be pantsing other little boys I was just absolutely flabbergasted that he did it. I imagine if I was the father of the other boy I probably would not think it was nearly as funny as I honestly thought it was Wow, does that sound like something I would have done.

I think Sydney felt the same way. As soon as we gathered her from class, Graham told her of his yellow sticker and the incident. She scolded him pretty severely. She came from every angle. Honestly, I think she did a better job than I. As we got in the car Graham buckled in and Sydney came up and whispered in my ear - "Daddy, that is the funniest thing I have ever heard."

None the less, I don't think Graham will be pantsing anyone at school anymore. We took away his TV privileges, his ability to play outside, and we made him write "Pantsing is a bad choice." three times on a sheet of paper to take back to his teacher.

Like father like son. Like father like daughter. I see myself in this incident as both of them.

Thank goodness I found a purpose.

Straight As

Yep, you heard me, report cards were delivered via email yesterday afternoon. Sydney received all As. I can't tell you how proud I am of her. Trust me, I knew she was pretty clever. I just didn't know for sure that anyone outside of our bloodline thought so. I fully admit it. I am a biased dad. I think my kids are the greatest. However, I also know that I have some very rose-shaded (and neuroblastoma-shaded) glasses. I never really know if what I am seeing is reality or just my conjured perception of the world. It is so nice when my feelings are confirmed by a third party. It just seems that much better - that much more real.

I should also say that I am pretty hardcore. I expect her to try her very hardest. In her case, I expect excellence. That is not an unrealistic expectation for her. She is capable of doing anything she wants in life. She is as stubborn and tenacious as her mother (don't tell Lynley I said that). I know, full well, that if she sets her mind to it their is nothing capable of standing in her way. This is also one of my biggest frustrations with her. You see, of all things, vocabulary is Sydney's weakest subject. Now, it isn't because she doesn't understand. It isn't because of some late effect of chemo that her vocabulary cortex (totally made up) has been degenerated. It is because she is a stubborn little twerp that hate, hate, hates practicing her vocabulary words. If she was 1/1000th as tenacious at her vocabulary as she was with obliterating me at bowling on the Wii I am quite sure she would be communicating solely in 4 and 5 syllable words.

None the less, I am pretty darn proud. Can you tell?

So, the last 2 major items of business are Ainsley's ear infection and Sydney's preliminary results from Houston. Yep, Ainsley has an ear infection. Like her sister she correctly self-diagnosed. Yesterday, we visited Dr. Debbie and she confirmed Ainsley's diagnosis. She is now on a healthy diet of antibiotics. We expect a full recovery by the time we scadoodle out of town this weekend.
Secondly, I heard from Dr. Louis from Texas Children's yesterday afternoon. The were able to continue to detect the EBV activated cells in Sydney - so, the previous findings were confirmed. They will be studying the marrows next. I will go into more detail tomorrow.

Well, I have to jet.

There is purpose all over the place today.

Reminiscing Fear

Good morning! I am happy to report the Dungans had a great weekend. While I can't say that it was anything out of the ordinary I am reminded today of what a privilege that is. It is easy to get wrapped up in life and to forget what we have been through and for what others are going through today. In all of the crazy travel and general busyness I have neglected to mention that Graham's friend Hayden was in transplant. They are now on day +7 and fully engulfed in the worst of the worst of transplant. I remember this clearly. Sydney had a very good transplant experience in comparison to many that I have witnessed and, yet, it still gets the hair to stand up on the back of my neck whenever I reminisce. Hayden is at that point where, everyday, it just gets worse. I think someone said it best when they said the only thing that seemed to break the monotony of the lows was a new low that was previously thought impossible. The body just continues to deteriorate and you feel as though you are just left there to watch. With every minute and hour it just gets worse and you begin to wonder if they will ever pull out of it. Honestly, I still have nightmares of some of the things that happened in transplant. You wonder how much their little bodies can take. You pray and beg for their cells to engraft so that their little bodies can begin the process of recovery. It is not just a scary time. It is absolutely gut wrenching. As I think back on our journey their are a few times that I remember being truly scared for Sydney's life and there is no doubt that this was right at the top of my list.

There are tricks to getting through it but mostly it is just a waiting game. The trick seems to be for parents to continue to put one foot in front of the other - to just keep plugging on. Time seems to just drag on and every minute seems like an eternity. You just have to keep focusing on what you can control. Keep letting them know that they are deeply loved and that you are there. Help them with everything you can and help the nurses to better care for your child. Focus on the little things - one at a time. And then, eventually, the next thing you know you will see a blip on the labs. You will see signs that the cells are engrafting. At first you will feel a ton of weight lifted from your shoulders but that is generally short lived as you begin to wonder if what they say is true. Will it get better? Will these little cells make the difference?

Yes, they do.

First 1, then 2, and then 4 - day by day it will get better - exponentially. All of a sudden their little bodies will begin to heal and their lives will come back.

You just have to keep praying and keep moving forward. You will get there.

Purpose is not easy but you can, and will, endure.

3rd Lesson learned at NCI Translates

I think it is truly apropos that I talk about this lesson today, the day after we hear that Sydney remains with no evidence of disease. While I certainly can't blame her success on the Nestle vaccine that she received I certainly can blame this last set of tests on it. The timing was very interesting. Perhaps that is the reason I am so sensitive to this lesson.

While at the NCI I had a job. I was an advocate for the agents pathway - biochemical targets and drug screening. My job was to identify how approximately 30 different medical abstracts fit into the agents pathway - one of the 6 "road maps" that I have been discussing over the last few days. I was supposed to apply the information and to help researchers figure out where they fit in the whole translational scheme. I was to get them thinking of the patient, the challenges, the process as a whole. My subject matter, biochemical targets and drug screening, was certainly interesting and something that I was capable of discussing but was not my true passion when it comes to research. It was for this reason that when I was not officially working I made my way through several of the other 30 or so sessions. I really had an opportunity to see the breadth of cancer research. As you know, I always have an ulterior motive. My goal was to find something new that could have applicability in neuroblastoma. I was looking to make that connection - to find that next most promising hope. To be honest, I found many promising agents, biospecimen discoveries, new imaging modalities and interventive devices. I even learned a tremendous amount of truly interesting facts on diet and lifestyle changes that have impact on cancer. It was all very interesting. But, nothing held the promise nor shook me to the core like the sections on immune response modifiers.

The idea of using the immune system to fight cancer is not a new one. After all, that has been the whole idea behind both the antibody therapies that Sydney has been on and the vaccine. I have said it before and I was certainly not the first. The immune system is the best weapon that we have against disease. It brings tools to bear that we can only dream of recreating in the lab. I don't think anyone would disagree that if we could get the immune system to identify cancer it would have no problem producing a cure. It has everything needed to do the job. The problem seems to be that we just have not been able (as of yet) to get the immune system to identify and kill the cancer cells as they should.

I was amazed by the abstracts and posters that I viewed in the immune response modulators sections of NCI Translates. It seemed that poster after poster I reviewed I found examples of cancer vaccines and other immunological approaches having dramatic success at defeating cancer. I saw whole tumors disappear and people achieving complete remissions - all of this and without many of the toxicities that we see with chemotherapy or radiation. It became evidently clear (in my mind at least) that this was the key to our success. More than any other session, it was the brains within this room that the cure lived.

The more I read and reviewed, the more of a believer I became. It seemed that at every turn I was introduced to a new idea on how to leverage the immune system to defeat cancer. More often than not I was seeing some successes. Now, don't get me wrong. I did not actually stumble on the cure. Their was not something sitting in that room that I could put my finger on and say was the cure for neuroblastoma. But, what I did see were many successes. The best part was that in these sections I saw the most dramatic effects. While in my "agents" sections I might have seen a new chemotherapy that had significant activity it was certainly not to the extent that I was seeing in the immune response modifiers sections. Furthermore, the toxicities were far less and in many cases their were no long term side effects seen at all. It became apparent to me, more than ever, that this was the future. This is what was going to lead to our cure.

While I will flatly say that I believe that immunotherapy will be our cure for cancer there are many problems with this approach. First, it is ungodly expensive. It really is. Second, it is risky. Mucking with the immune system can come back to bite you. You have to be extremely careful. Third, although we have discovered and produced many incredible tools to help the immune system do its jobs most (if not all of the best ones) are held on the shelves of pharmaceutical companies not allowed to be used. This last one just blew me away. But, I can not tell you how many times a researcher had been turned down time after time trying to get a promising new drug into patients because it was held as intellectual property of a drug company that was unwilling to carry it forward. There are so many drugs out there that we know work but that we just can't use - literally just sitting on a shelf. For those of you that have been waiting for 3 plus years for the Sloan Vaccine. Guess why? It was one of these very types of drugs that has held this promising therapy up for so long.

This will come as a surprise to many with neuroblastoma - especially those that have antibody therapy. Did you know that there are drugs that are 10 times better than GM-CSF or beta-glucan at stimulating key components of the immune system? Did you know that they exist now, that they have been shown to be much better, and that they are just sitting on a shelf somewhere. They are. I feel confident in saying that we would be light years ahead of where we are today in cancer research if we could just get a hold of these drugs. It is disgraceful.

So, I really began this entry to talk about how blown away I was by the successes that I saw with vaccines and other immune response modifiers. For me, it was that moment that a light went off in my head. In fact, I am madly planning a path at how we will jump on the coattails of many of these successes. While I still fervently hold the belief that the cure to our future is with the immune system I think the major lesson to come out of this is the problem of the pharmaceutical companies. They are killing cancer research. And, at the very least, they are slowing our pursuit for the cure. (if you would like to argue this point please feel free to write.) I don't know the answer. I don't know how to fix it. What I can tell you is that after being heavily involved in cancer research over the past five years I have seen dedicated researchers, scientists, and oncologists working as hard as possible to get us to a cure only to be hindered time and time again by a pharmaceutical company. The researchers are not our problem!

I have to muster enough purpose to figure this out.

Official Report

The official report is in. All of Sydney's test have come back and they are negative for nueroblastoma or any suspicious activity. She is clean!

Deep Breath.....

Now we wait to see what the big brains at TXCCC discover about the vaccine.

Back to purpose!

2nd lesson learned from NCI Translates

Okay, so no word on the biopsy results yet. While Lynley and I are both completely ecstatic with the findings of the aspirates, I find it necessary to continue my act of mental disobedience by continuing to boycott my worry. Today I will address my second lesson learned at NCI Translates.

As I mentioned yesterday, the whole point of NCI Translates was to speed up the research process. This isn't an easy task. I often hear people advocating for all kinds of ways to speed up research but, to be honest, the efforts usually have the opposite effect. Speeding up the cure is not as easy as throwing more money at the problem or funding different research or researchers. It goes far deeper than that. The biggest problems appear, to me at least, to be political and financial in nature - but not the way you think.

In order to speed up the research process the NCI spent several years evaluating their successes. They dissected each successful translational discovery and broke it into it's individual steps. By doing this they were able to identify these "road maps" which showed all of the steps necessary to successfully translate discoveries from the bench to the bedside. This is good and important. Now, anyone can look at these road maps and see exactly all of the steps needed to translate science. This should help to speed up science in that the NCI now hopes to fund along this continuum. They are planning to fund people who have translational goals. With more people pursuing translational science their are more people working productively toward the end goal - a cure. We are more likely to get there more quickly with more people working on the problem in a productive way. Period.

As I addressed yesterday, they are also likely to speed up the process by the mere fact that people are following the road maps. Now that scientist are aware of what comes next they are more likely to work on achieving the goals of translating the entire project as well as their tiny piece. They are likely to address intellectual property and political issues more quickly because they now know that they will becoming ahead of time. Think of it this way. Research is done in this way. When a researcher gets hungry at about 6:00 PM he starts heating the oven up to cook his dinner. He then waits for it to heat up. Once heated he gets the food out and prepares it to be cooked. He then cooks it in the oven. An hour later his dinner is finally completed and he can commence eating. The problem is that now he has been hungry for an hour before he starts to eat. Now, what the road map provides is a plan. If the researcher looks at his road map he knows he will be hungry at 6:00 PM. Knowing this he begins heating the oven at 5:00PM. In this way his meal is completed at 6:00 PM when he knows that he will be hungry. No time wasted and he gets his meal on time. It is the same way with research. Researchers are currently trained and rewarded to work on one discreet project after another with little thought on what comes next. This new way of thinking encourages them to work concurrently, hopefully speeding up the process.

Another way the road map helps to speed up the research process is by helping leaders to prioritize research. Face it, we have limited resources and patients. That fact is not going to change. In fact, with the economy going in the direction it is going I would expect budgets to become even more constrained. It is not going to change. You may think it is our turn. Well, the problem is everyone thinks it is their turn. It is not going to change unless we change it ourselves. I am sorry to be harsh but it is a reality. The point is that prioritization becomes even more important. It becomes critical that only the most promising projects are carried forward. In other words, if your preclinical research does not support dramatic changes in survival then it needs to be put aside in favor of projects that have more promise. Wild goose chases and suboptimal research will only slow down the process by stealing resources from more promising research. This road map will help to prioritize work.

Unfortunately, this will not help pediatrics and "rarer" cancers. They will focus on the biggest bang for the buck. The NCI will focus on research that will have impact on the greatest number of people. For us that means we have to prioritize our works as well. We have to focus on targets and drugs which also have applicability in other cancers. In this way we will find financial support for our projects. I am happy to say that their have been several examples of this done well. The NANT, TXCCC, CHOP, MSKCC, and St. Judes have been successful in finding promising therapies for children with neuroblastoma that also has applicability to larger diseases. This helps us all. The other thing that we can do is to hang our research on the coattails of promising projects in more popular cancers which also has applicability in neuroblastoma. Ultimately this is the research which will be carried forward. We need to be mindful of this and figure out how our children can benefit from this research. When I get a chance to explain my 3rd lesson from NCI Translates I will show some very specific examples of research we (the neuroblastoma world) need to be following very closely for this reason. There are several promising research projects in lung, breast, and colon cancer that could have dramatic impacts on children with neuroblastoma that we need to be on top of. This opinion is not my own. It was shared my several neuroblastoma researchers that were present at the meeting.

As I thought about all of this I really felt that the "road maps" or "pathways" added value. But, in another sense I felt that they were still missing the boat. The pathways were modeled after successes - successful translational research. However, they weren't modeled after the successes that necessarily took the shortest time to complete. While the pathways were pretty accurate at describing every step in the process it offered no guidance on how to complete each step as quickly, efficiently, and accurately as possible. In this sense, their is still no reward for completing the work quickly. There is nothing definitive to speed up research. This is a problem. I don't have the answer here but I certainly offered my suggestions. This was my job as an advocate. Bottom line, the pathways will help to speed up the process but there is more that can be done. We need more creative thinking. We also very desperately need a definition of what research needs to be carried forward and what needs to be abandoned. We, the world of cancer, are still wasting resources.

As I sit here and think, I have decided I have a fourth lesson to be learned from the NCI. This comes under the heading - pharmaceutical companies are good investments for you extra dollars but horrible investments if you want to cure cancer. The answer is out there. Right now. Unfortunately, like 1000s and 1000s of drugs, it is sitting on a shelf in a pharmaceutical company not being carried forward because they don't believe it is profitable enough. You think I am crazy. Just wait to you hear what I have to share.

Well, I had best be off. It is time to focus on my little purpii.