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!