October 2007 Posts

6:04 AM 10/1/2007

I am getting a little bit of a late start this morning. I have spent the last hour or two writing two new families that have just been diagnosed with neuroblastoma. To this day, my heart just sinks when I hear of another family stepping into our shoes. It just kills me that we have not come farther and that we aren't closer than we are. When I write to a new family I try to always give them hope. I let them know how lucky we have been and wonderful Sydney is. I feel an immediate kinship to them and I want to help. I want to let them know that they can get through this. I love the opportunity to share and I hate it. I am glad that they have found another family and child that has neuroblastoma. I am glad that I can share our experiences and hopefully bring them some comfort. On the other hand, I hate that I do not have something more to tell them. One day I want to be able to tell the family that calls that it is okay. I want to tell them to take a shiny little pill and it will make their child all better. I want the cure and I want it now. We have got to do better and work faster.

On another note, our weekend was wonderful. We even began the process of potty training Ainsley. She did really well considering. In fact, until late Sunday afternoon she did not even make a mistake. Of course, I had her running to the bathroom about every 20 minutes or so. She never really had the chance to make any failures. Sunday afternoon, however, she had the opportunity to fail really big. By now, you know my (completely rational) fear of human poo, so I know I won't have to go into complete detail. Let's just leave it at this.

She was in the kitchen and she looked like she need to go to the restroom. I asked her if she wanted to go to the potty. She nodded 'yes' pulled down her pants and her underwear and made a beeline for the bathroom. Yes, I know that sounds strange. She hasn't actually learned that you can wait until you make it to the bathroom to take off your pants. She thinks that the moment the thought of the bathroom comes to mind you need to strip down right there and then to make a beeline to the potty. Apparently, it is a trained behavior not to strip and run. Regardless, she was off to do her business. I ran into the other room to check on something and the next thing I knew I heard Lynley screaming. There had been a snafu. Apparently Ainsley had already gone number two before we had suggested that it might be a good idea to go to the bathroom. Sure enough, there was a load in her underwear and just like Hansel and Gretel she had left us a little trail all of the way to the bathroom. I can only assume that she had wanted to remember where she had left her pants. By the time I made it to the bathroom I found her wiping - wiping poo all over the toiled seat, handle, and anything she could get near. It did not smell good. In fact, I don't really have anything more to say about that.

In the end, I am not so sure Ainsley is ready for potty training. I don't know whether she has made the connection. Don't get me wrong, she loves going to the potty just like a big girl. I just don't know if she completely gets the whole cause and effect. She knows she is supposed to go potty in the toilet but I don't think she has attached the sensation of the urge to go to the potty with actually going to the restroom. It is an interesting conundrum. One that I will be so thankful once we have figured it out.

Human Poo is still kryptonite to SuperDad.

Purpose, give me strength.

6:09 AM 10/2/2007

Good Morning! You know, one of the signs of being a human being is that you are able to walk upright. I am happy - no proud - to say that it seems that all of my children have met that criteria. Going along with this same line of thinking, I would also surmise that a second criteria of being a human being would be that you would not smear poo on the back of the bathroom door. I mean, that is common sense really. This is something that distinguishes us from chimpanzees, right? Well, unfortunately, it seems that I am in fact a parent of two human beings and one very icky monkey. I don't know of any other way to put it really. Enough said.

This morning I will be taking Sydney to the clinic for an oncology checkup. This should not be anything serious. However, we will be revisiting the subject of Accutane. Technically, I already had this discussion with Dr. Granger over the weekend but we will revisit it this morning to make it formal. I think we are of the same mind. Unfortunately, this is a bit different of a mind than Lynley. For the record, Lynley is doing what she does best. She is protecting the quality of life of her daughter. She is a huge advocate for Sydney and she has done tremendous work to protect her from unnecessary discomfort. I certainly can't fault her for that. Sydney is especially in need of that with a father who is so aggressive when it comes to fighting the beast. I don't just want it dead I want it gone for ever. In this sense I don't want to just sit on the football in the 4th quarter and ride my lead to a 28 to 7 victory. I want to demolish it. I want to grind it in. I want to destroy it. I want to fight on. I want to annihilate it. I want to win 156 to 7.

Wow, I am a bitter little monkey but I suppose it is probably better than the poo throwing kind. Regardless, I am trying to paint a picture for the two points of view. What I am hopeful of is that we can find a way to balance the two needs while providing Sydney with the best possible outcome. I certainly do not want to see her go through what she did after that first dose the last time we tried this agent but on the other hand I want to make sure we gave it our best. In this sense we will probably build up to the dose gradually over a few days. Hopefully, we can get to the necessary dose without putting Sydney into such a horrible state. We will see what happens by the end of the day.

Well, I had best be off. It is time to hit the showers and get ready for an early start this morning.

Today is full of purpose - both human and the other kind.

5:52 AM 10/03/2007

The good news is that yesterday I did not find anything smeared on the back of the bathroom door or find any little surprises scattered on the kitchen floor. However, Lynley keeps walking around the house this morning saying that something smells. Ordinarily I would tell her not to worry about it, that it was just in her head, but after the last two days I have to admit that even I am a bit worried myself. With a two year old being potty trained you just never know what you are going to find.

On a fresher smelling note, all went well it will at the clinic yesterday morning. It should not come as a surprise that it will go down in the annals of oncology that this was another "long" meeting with the Dungan's. We covered many topics and came to many decisions regarding Sydney. One of the first things that we discussed was her new scanning schedule. Lynley and I still aren't quite ready to give up on the quarterly scans but we also aware that too much is not particularly a good thing either. We have elected to take some radiation out of the mix. From now on the only things that we will be doing every three months are bone marrow aspirates and biopsies and a bone scan. We will be holding back on the MIBG and the CT for at least six months. This will save her some hopefully unnecessary radiation exposure. Although it would be possible for disease to skirt around the scanning procedures that we have chosen, the type of disease that we would be finding is probably less likely to occur as time goes by - at least for the CT anyway. The CT is handy for detecting solid tumor but the further we get out from her initial treatment the less likely we are to see a recurrence in the original tumor location. We have taken the MIBG out of the mix because we have not seen anything on it since before her transplant in 2003 and it did not light up at her "relapse." Given this we think it is probably less likely for recurrent disease to show up on MIBG and anything that would, we feel would probably be found on the bonescan. We chose the bonescan because there is less radiation involved and it still gives us a full body view of the skeleton. It should give us a pretty good look at all of her bones and we should be able to detect recurrent disease. The problem with the bone scan is that it is less specific for neuroblastoma. In this sense we are more likely to have a positive finding on the bone scan but it may not be neuroblastoma. It could be just about anything that causes significant bone turnover - injury, infection, etc. Should we have a positive finding it would be an incredibly nervous time as we will have to wait for further diagnostic tests and an MIBG but, at least, we will have temporarily spared her from some radiation.

Topic two was regarding her sinuses. She is still full of snot. Her sinuses have been showing significant congestion on the last three ct scans. It is time to get aggressive. We finally settled in on a pretty aggressive drug combination aimed at dealing with it once and for all. On a similar note there was still a bit of fluid found in her left ear so we are still in wait mode for getting her ears tested for another set of hearing aids.

The final discussion point was putting Sydney back on cis-retinoic acid. After much discussion we decided to put Sydney back on it on an extremely tapered dose and then we will very gradually ramp her back up. In fact, during this first cycle we probably won't even get her up to an efficacious dose. However, we will hopefully protect her from another nasty reaction and hopefully get to the bottom of what is going on. There are certainly no guarantees. Sydney's body is now officially an enigma. With all that she has been exposed to there really is no knowing what is going on in that little body of hers. We will just take it one step at a time. I am a little bothered by the fact that we are not ramping her up more quickly. It seems a little silly to me that this entire cycle will be more an exercise in tolerance and less about achieving efficacy but, then again, that is what most phase 1 trials are about. The promising part of this is that if all goes well we will be able to get her where she needs to be during the next round. I am happy that, at the very least, we are all in agreement that it is probably worthwhile to put her back on it.

Well, with that ,I had best be off. It is crunch time for the golf tournament. I am still looking for a few players (I had some cancellations yesterday) but I am also looking for people that would like to come to the dinner that night. There will be a great band, an auction, and it should be tremendous fun. At the very least it is for a great cause. Tickets can be purchased online at http://www.GolfForLifeCup.org.

Wow, that was a lot of purpose to get out in one sitting.

6:28 AM 10/4/2007

Good morning! Okay, so this diary entry won't rank up there in the annals of your favorite entries. On occasion I just get my self so incredibly busy that my diary has to suffer just a bit. So, first I apologize to Sydney, Graham, and Ainsley who are hopefully 18 and reading this some day. So sorry your Daddy is busy working. Oh and by the way, just so you know, you aren't making it any easier at home. In fact, Sydney, thanks for staying up until 10PM last night and Ainsley and Graham, thank you for waking up at 5:30 AM this morning. Secondly, I also want to apologize to all of those daily readers that are looking for a nice Dunganlet story to start your day - no poop to report today - literally. Finally, I am sorry to all of the other parents who read my diary looking for nuggets of neuroblastoma information. I have been a little shy on that forefront lately. There is more to come.

However, for all of you that are playing in the golf tournament, I am not so sorry for you. This is a lot of work. I have learned my lesson. However, if you would like to play, come to the dinner following the tournament, or would like to volunteer on Monday I would love to have you. It will be a great time. I can tell you that a whole lot of work went into it just to ensure that everybody has an incredible experience and that we make a serious dent in research. Please consider joining us. Go to http://www.GolfForLifeCup.org for more information.

Well, I am off. There is a mountain of golf tournament purpose to get into gear.

5:43 AM 10/5/2007

At this point I am pretty much operating on borrowed fuel. It sure would be nice to get a few solid nights of sleep. My biggest issue is that my mind is racing constantly so even when I do sleep I feel like I have just spent the entire night thinking of all of the tasks that have to get done. The genuinely interesting thing about this is that I have been absent this feeling for so long and had not really noticed it. They say that absence makes your heart grow fonder but, in this case, it really doesn't. It just makes you appreciate what you have even more. I remember this sensation all throughout Sydney's treatment. My mind raced constantly. This was primarily from terror. During these seemingly sleepless nights I thought about what the oncologists said. I planned "what if" scenarios in my head. Research that I had read during the day would literally pound inside my brain until I could digest what it meant to Sydney. Wow, this sensation is almost like living those terrifying nights in the hospital. I thought I had just become used to the sensation. I still think about neuroblastoma every night. It is the last thing I think of before I go to bed and the first thing I think of when I wake and my dreams almost always include some element of research, fundraising, or how I am going to apply any of these ideas to Sydney. Many of the thoughts are the same but the difference appears to be the lack of severe terror and worry. I like thinking about those things but I am thankful to be without the terror.

Right now, this is fairly easy. I am not going to gripe too much. I would just love a complete night's rest with out having my brain jostle me awake. Truth be known there is not a lot of reason to worry. Most everything is in place and ready to go and there is little I could do to change it at this point even if I wanted to. The problem is that my mind does not know that. For some reason my mind kept racing to details of the lemonade stand that Sydney is going to have at the golf tournament with some of the other families. Many of our friends that have stepped into the world of neuroblastoma will be there as well. The Podeszwas, Davidsons, and Mc Partlands will be playing and there are several other families that will be helping out in one way or another. The Stuckers, Anthonys, Saxons, Bradshaws, Aigners, Larsons and Cruses have all helped out and many will even be making an appearance. This occasion will probably go down in history. I can't think of too many occasions that this many families get together outside of a medical conference.

Well, I had best be off. The kiddos are beginning to stir. Graham has already made it downstairs and has usurped the couch that I am sitting on to watch the Wiggles. The normal kind of chaos is about to begin.

This is purpose.

5:12 AM 10/10/2007

Well, well, well, well, well! I am back into the land of the living. Some might even say I am down right perky. Oh boy does it feel good. I am happy to report that I survived the Golf for Life Cup and I could not have done it without help from so many. To be honest, I don't remember a whole lot of it. I was so completely exhausted by the time the tournament arrived that I just kind of went through it on some kind of zombie autopilot. As a first annual tournament and the first I have done on my lonesome I thought it was a tremendous success. I can not tell you how many people came up to me and told me what a great tournament it was and what a incredible golf course we had selected. Anything can always be better in hindsight but I was pretty proud of this tournament. Sure, I learned a tremendous amount from my first attempt. I have taken copious notes and have done my best to ensure that I do few things differently next time. Again, I was extremely happy with the event and I think it went very well. I just know that I can do better to make some things run more smoothly and to keep me from doing things that I probably could have done earlier or at a different time. That would have freed me up to be the host of the event instead of the frazzled worker bee that I turned into.

I also have to give big thanks to all of my volunteers. I could not have had such a successful tournament without those that were there to help me out. There were Gay May and Jerry Geary, my unforgettable volunteers, who handled much of the registration and our par 3 betting parlor. I also have to thank Linda Benge and Gloria Fuller who dropped everything on short notice to come out and help on the day of the tournament. One of the really neat things that they also did was purchase a chance at the auction for me to make a hole-in-one. It was no cheap purchase. I am sad to say I missed the shot but happy to announce that I at least hit the green. Also, one of my biggest fundraisers was our friend Jenny Betz who beat people over the head to put more money on the line at our par 3 beat the pro hole. She made a ton of money for the foundation. Finally, I can't go without remembering to thank my Mom who helped to run the show whenever I was too busy doing something monotonous which I should have done earlier. This seemed to happy rather frequently. Registration went off without a hitch and she also ensured that our live auction display was outstanding. Now, my wife on the other hand simply disappeared for half the day:) Oh yeah, I should probably mention that Ainsley's pre school called and they wanted us to pick her up at about 10:00 AM. They thought that she was under the weather. As it turns out she has stomatitus, a pretty benign viral infection as long as she does not go licking other kids or drinking from the community cup. However, I guess with Ainsley, we just never know. For this reason my number one volunteer went from golf volunteer extraordinaire to babysitter of five. Thankfully she got it all handled so that I could do my job.

The other people I have to thank is all of the other neuroblastoma families that lent their helping hands. Cort Anthony and his mother Laura came to help out. Laura was a tremendous help to my wife who was racing to manage a gaggle of rug rats and a lemonade stand to boot. In fact, Cort became one of the three Dunganteers best playmates. I was so thankful that they came out to show their support. Additionally, Alex Podeszwa's dad, David, and Sadie's parents and grandparents came out to play and lend a helping hand. Finally, I have to remember to give a huge thank you to Ava's daddy, Mark McPartland who, coming from North Carolina, brought out a ton of golfers and sponsors to the event. I know it would not have been nearly as successful without his help. Thank you, thank you, thank you.

Now, believe it or not, these 6 and a half people and some families ran the entire tournament and I guess that is where I failed a bit. I have learned very quickly that we could have done much more with more people. I probably could have used about twenty to do all of the things that I thought of at the last minute. I think this is ultimately the trick. The tournament was great and will go down in history as so but it could have been better. Unfortunately, I would not have known what to do better had I not gone through it beforehand. Next year we will do many of those things and I hope to have the manpower to get it done. Mark your calendars! Our next tournament in Fort Worth will be on June 16th, 2008 back at the beautiful Mira Vista Golf Club. I am going to start looking for volunteers a little bit earlier - now for example - and anyone that would like to be on the tournament planning committee can please send me an email because we will be starting to meet within the next month.

Now, I can not leave my diary without saying how proud I was of my kiddos. With a bunch of 6 and under squirts you never know what you are going to get when you throw them into a new and chaotic environment. However, my kids acted perfectly. They played and had fun but they were also always there to greet somebody politely and thoughtfully. I have never been more proud. I have the best twerps in the world.

You make your Daddy smile -

My purpii.

4:32 AM 10/11/2007

Just as I think life is going to return back to some level of normalcy Ainsley spikes a 102.3 degree fever. We think it is probably a side effect of what appears to be stomatitis. She has small ulcers inside her mouth and under her tongue. She has also shown signs of having some pretty raging headaches. Yesterday afternoon she spent pretty much the entire time cuddled in my arms. Later that evening we were able to get the Tylenol and Advil (we are alternating) to settle in and she finally received some comfort. Of course, with comfort also came rambunctiousness and deep seeded desire to play with her brother and sister out in the yard. Both Lynley and I expected to stay up much of the night and were pleased to find that she seemingly made it through the night rather comfortably. It will be interesting to see how she wakes this morning. Today will be another day at home with my little sicky.

On another note I woke up this morning to great sadness as I read the words of Chihn Tran, another father of a child with neuroblastoma. His son Lucas has been treated at both UCSF and Sloan Kettering. I had an almost instant connection with them the first time I met them. I have been working with his father on the hu3f8 project. I was heartbroken to hear that Lucas was not doing well. In fact, he was doing outright awfully. He has had progression of his tumors which are now quite visible and they seem to have progressed right through both chemo and radiation. From what I have read, Dr. Matthay, a very highly respected oncologist, has told them that it is time for pain management and to allow the disease to run its course. Their questions regarding their son were simple: "Was it better to pass at home or at the hospital?" and the most telling of questions "Is it more painful to have organ failure due to disease or chemo toxicity?"

It was the last question that hit me the hardest. I have thought of these questions many times. As I sat here contemplating the questions I was immediately washed by the reality of the questions that were being asked. This isn't some random theoretically question. This is the question that a mother and father are asking right now about their child's life. They aren't looking for opinions or comfort. They are looking for specific answers to specific real questions. They have been told that their child is going to die from neuroblastoma and they are trying to ease his pain and suffering. There is no euthanasia here. For some reason we don't do that for humans. How do we reduce the suffering of our dying child? I certainly don't have the experience to answer that question. While yes I know of many who have gained their wings and I have sat and talked with many the angel parent about their child and their last final days and seconds I certainly don't have any experience. I can only imagine the horror of this world. I so wish I had an answer.

I wish I could have found the cure earlier. I wish I could stop the pain. I wish I could keep another family from entering this world. Change can't come fast enough.

My dear friends. I am so terribly sorry.

My prayers are with you and I hope Lucas finds some quality to his life.

My purpose feels strangely weak and inadequate today.

3:57 AM 10/12/2007

Good morning! I bolted out of bed full of excitement this morning for some unknown reason and could not go back to sleep. As soon as my mind realized I was awake it bombarded my with ideas and directions so here I am almost an hour later with my mind still racing. I have a feeling that my body will be craving a nap in the early afternoon.

I have a few good things to report. First off, Ainsley seems to be on the road to recovery. Yesterday brought an entire day without fever and for the most part she seemed active and playful. She even spent the morning helping daddy run errands around town. She is a tremendous helper. This is one of her favorite past times. She simple loves helping her daddy. It really does not matter what I am doing. She can always find a way to help and takes great pride in doing so. One of her favorite past times is helping me roll the trash cans out to the curb. Although I have to slow down quite a bit and hunch myself over to get the handle down to her level the sense of pride that splashes across her face is worth the lower back pain that I know will be coming. Yesterday we made all kinds of stops. We picked up some more items from Mira Vista. We stopped by the printer to pick up and drop off some lunch for life materials. All in all, we had a busy morning and I got through some much needed errands.

Last night was a ballet night for Sydney. This is fun for the kids because the rest of us usually play on the playground as we wait for her. They love the focused parental attention. Last night was a bit different, however. Lynley took the kids as I participated on a conference call with Dr. Cheung and a small group of parents regarding the humanization of 3F8. It was good to hear Dr. Cheung. He has been out on medical leave for about 6 weeks and I was happy to hear him sound no worse for wear. I cannot say that I learned anything new on the call but he did spend and little over an hour answering questions. I am not trying to sound like a smarty pants. I had just already had all of the questions answered to my satisfaction previously. However, it was good to see his continued interest and excitement in this project. I was also happy to hear him show an interest in other bodies of research both in and outside the walls of Sloan Kettering. I think many often believe that there is a mentality that it is Sloan Kettering against the world. It simply is not that way at least in all of my discussions with him. The humanization of 3F8 is an interesting and hopeful project but it is only one of many others that may even be more promising. There are many interesting new targeted agents that are on the horizon and we need to keep our minds focused but open. I think that was one of the most interesting points that Dr. Cheung made and one that he almost always tries to sneak in to any discussion on funding. He has also been the one to continually remind me that all of our eggs should not be in one basket. Invest in promising ideas of those with proven experience in delivering improvements to our children. This is one motto of his that I have continued to listen to and one of the reasons I am so supportive of his work. He cares about our kids, he looks outside of the box, and he is not afraid to try new ideas. That is my opinion and I am sticking to it.

On the neuroblastoma front this is another busy day. I have two new relapse families that I have been spending quite a bit of time talking to. I am also working on 4 or 5 research projects simultaneously. I have several committee meetings for various organizations. I have to get my thank you notes out for the Golf for Life Cup. I have 5 Lunch for Life events around the country in the next two weeks. I am helping with another golf tournament in Las Vegas. It is just about time for our biggest campaign of the year for Lunch for Life. I am totally redesigning the Lunch for Life website. I am editing a video for childhood cancer and neuroblastoma. Finally, I have to help get the word out through out Texas regarding the importance to cancer research of passing Proposition 15.

All in a life's work I guess.

My purpose is busy. It is time to focus.

6:39 AM 10/15/2007

Good morning! It was an interesting weekend to say the least. Saturday morning we took the kiddos in for the flu vaccine and Graham showed up with a 100.3 degree fever. By the time we got home he had spiked to about 102. We spent the remainder of the day trying to get it back under control. For some reason he threw up every dose of Advil that we tried to give him. Eventually, with Tylenol on board, he broke his fever in the middle of the night. He has given all appearances of making a full recovery although he woke up at roughly 5:00 AM this morning and is in a full whine. I am hopeful that Lynley will let him survive long enough to get dressed for school. He is pushing every button possible this morning. My son, surely not!

Today will be a special day. In fact, there is a great surprise for us today. To provide you with some background it is time for a little "edumication." On Friday, I mentioned Proposition 15. Although this is a Texas "thang" its impact will certainly be felt throughout the world. For me, its passage is more important than any political election. This piece of legislation will save hundreds of thousands of lives and inject 3 billion dollars into cancer research. Although this is only a fraction of what is needed for cancer in general, it will surely speed the cure. It will save lives - PERIOD. Now, this is obviously not just for pediatrics. The bulk of the money will be used for adult cancer but I am all for the trickle down theory if will get more promising new agents into the pipeline. We need more options and this will provide it. I will tell you more tomorrow about today's upcoming brush with fame but here is some reading to prepare you.

Cancer-Free Celebration: Lance Armstrong Hitting the Road on Texas Bus Tour to Urge Voters to Support Proposition 15
Wednesday October 3, 6:29 pm ET
On Anniversary of His Diagnosis, Armstrong Asks Texas Voters to Approve Historic Investment in the Fight against Cancer

AUSTIN, Texas--(BUSINESS WIRE)--The Lance Armstrong Foundation (LAF) announced yesterday that its chairman and founder will host a statewide bus tour beginning October 13 to urge Texas voters to support Proposition 15 and strike an unprecedented blow against cancer. The announcement was made on a day celebrated by Armstrong as the 11th anniversary of his cancer diagnosis
"We're going to hit the road to urge Texans to vote for Proposition 15 and make an investment in their own lives and the lives of their loved ones," said Armstrong. "Cancer has touched the life of every single Texan and it's the number one killer of people under the age of 85. But in recent years, federal funds to fight cancer are on the decline and it doesn't look like that's going to change. We can't wait for Washington. With Prop 15, Texas is going to lead the charge in the fight against cancer."

Proposition 15 is a constitutional amendment that would create the single largest state-level investment in cancer research, prevention, early detection and control programs in the nation. If approved by voters, the initiative will establish the Cancer Prevention and Research Institute of Texas, responsible for distributing $300 million in grants to cancer prevention and research programs throughout the state each year - starting in 2010 and continuing through 2019. This historic investment will save lives and spur economic growth with the creation of new jobs and the construction of new research facilities and laboratories. By encouraging grantees to seek matching funds, the initiative will help trigger outside and private sector investment as well.

This year, more than 95,000 Texans will be diagnosed with cancer, and more than 37,000 Texans will lose their lives to the disease. Cancer costs Texans $30 billion a year in direct and indirect costs. Nearly 600,000 American lives are lost to cancer every year.

Armstrong will launch the bus tour on October 13 in Austin at the Texas State Capitol and then travel to events in Dripping Springs, the Dallas/Ft. Worth area, Houston and San Antonio. He also will discuss Proposition 15 on KLRU's "Texas Monthly Talks," airing in Austin October 4.

Texans must register to vote by October 9. Early voting begins October 22 and ends November 2. Election Day is Tuesday, November 6.

Another example of purpose in action.

5:57 AM 10/16/2007

It is probably totally inappropriate to say "Wow, he is an adorable little guy." It would be even worse to say "he was my all time favorite bike riding oompa loompa." Especially considering the importance of his journey here, I would never consider mentioning that "he is the neatest mini cancer warrior I have ever seen." Each and every one of those statements would be totally unacceptable, so I am not going to mention any of those things about the little guy. The fact that I will mention is we had a great time at Cook Children's yesterday.

After roughly an hour and a half of waiting we had the opportunity to see Lance Armstrong live and in person. The news conference/rally was attended by several state senators and representatives. One of the key speakers at the event was Rick Merrill, Cook Children’s newest president and CEO. Both Lynley and I were tremendously impressed with him. He did an incredible job representing Cook's. Following his introductory speech there was a gaggle of politicians who engaged in the usual pomp and circumstance and back-patting. Following that, Dr. Murray spoke of the importance of cancer research funding. He even had the help of the star of the afternoon, a 14 year old girl with osteosarcoma.

Finally, it was time. Lance Armstrong stood up to the podium. I guess you can tell from my opening paragraph that I was a bit shocked about his size. He was huge in my mind. He had won seven Tour de France. He had defeated metastatic testicular cancer. He was bigger than life. I was sure he was going to be 3 feet taller than me. Yet, when he stepped up to the podium and adjusted the microphone down a was shocked. I was totally blown away when I saw him in person. He was so small. It is amazing what your brain can do to create such an icon out of someone. But, I guess this is all really unimportant to his mission and his purpose there yesterday afternoon. He was quite personable and he did a great job communicating the importance of the passage of Proposition 15. In his words, "I'm here to tell you, as a cancer survivor, this is what we need." He spent time to tell the story of how the proposition came to be and highlighted the importance of its passage to Texas. He did an admirable job and I was so thankful that he was taking time out of his jam packed star studded schedule to fight for cancer research in Texas. He did not have to take this stand. He could have walked away. But, here he was - fighting for all of us. He is taking a real stand. He is leading the way. And, I am proud to be a part of it.

Believe it or not, Lance is even bigger in my mind today than he was the day before.

Many have asked. "Sure, but what does this mean to pediatrics and to neuroblastoma?" "How many of these 3 billion dollars will trickle down to our kids?" My answer is more! More dollars than we have now. There will be more cancer funding, which means more jobs for researchers, more lab space, and much more research. There will be more awareness and more people trying to find a cure. I can't tell you exactly what the dollar amount will be. I can almost guarantee that it won't ever be what we would like. It will never be what we feel like we need. But, let's be honest, would anything short of a cure and bringing all of our angels back to life be enough. Probably not, but it will get us closer - much closer. It will save lives and it will speed the cure. Bottom-line, there will be children with neuroblastoma that live because of the research that this proposition will fund. To me, that is the most important thing. That is purpose.

Yesterday was a good day for our fight against neuroblastoma.

With the passage of this proposition, there will also be more people with purpose.

5:03 AM 10/17/2007

I know I am stating the obvious here, but, little boys are different than little girls. It goes beyond what can be plainly seen from the naked eye - literally. They are a different species. You may not think they are but, trust me, they are. One of the things that has just amazed me about my son is his propensity for gross boy stuff. He finds tremendous joy in burping and passing gas. Now sure, I could understand if this was a trained behavior. For instance, if he learned it from his sisters or his mother it would be one thing. But all of them find this nonsense pretty gross as well. That would leave me as the culprit and the big male role model but I can assure you that is not the case. Lynley would kill me if I ever did such a thing. She has a very low tolerance for grossosity and a mean streak when it comes from misbehaving husbands.

So, really, it has to be something either inherent in the boy or something that he picked up from school. He does have several boys in his class who have older brothers and we have had to deal with some behavioral issues as a result. One of the kids in the class has taught all of the others to say not so cute little catch phrases like poopie head, butt face, hell, and damn. Trust me, there is nothing cute about hearing a 3 year old say "damn it" when he can't get the buckle on his car seat to work. We put a damper on sayings such as those very quickly. He has learned not to say any of those things around us at home but I have a sneaking suspicion that there is still more of it at going on at school. Everyday, the minute I get Graham into the car I get to hear the explanation of the days events which usually goes something like this: "Daddy, I was a good boy today. I didn't say any bad words. Beckett got it trouble for calling Gabriel a poopie head. But, I didn't say anything bad and when I get mad I just say, 'Aw Pickles!'" Yes, Lynley taught the boy to say "pickles" whenever he gets mad. I have mixed feelings about that but I suppose that a 3 year old can get away with that with out getting laughed at too much. It certainly gave him a suitable alternative which he finds quite funny.

This still doesn't get beyond his stinky spewing orifice problem. The boy loves to toot. I can't directly blame this on his friends at school but I just don't know where he got it from. I would love to use Lynley's example and come up with a suitable alternative but I just don't know what that could be.

I can't believe that this is what my life has come to. I get to do important work everyday. I get to help families. I get to raise research funds. I get to meet with top investigators across the world and discuss the very height of the neuroblastoma research world. I get to be part of the solution to a horrible problem. It is very important to me that I stop neuroblastoma and here I find myself trying to keep my son from farting in public. It just doesn't seem right. This is a murky area.

Does this qualify as purpose?

4:52 AM 10/18/2007

The good thing to report is that everyone made it through school yesterday, but, just barely. Sydney received a green sticker instead of a blue sticker in her take home notebook. There are four levels twerphooddom at Southwest Christian School. There is blue sticker twerpness which means you have been a pretty good kid. Then following that there are descending levels of twerptitude. These are green, yellow and red. Sydney's green sticker is representative of the fact that she did something wrong but that it was a single incidence and she corrected her behavior. At least that is what it is supposed to mean. The teacher always tries to jot a few notes down in cryptic fashion to give us an idea of what transpired. For instance, it might say "talking in circle time", "did not keep hands to herself", or "did not do homework." You see, these are simple infractions. They need to be corrected and dealt with but, in the big scheme of things, these are generally not huge life events.

This is why it caught me by surprise when I opened up her notebook to find a green sticker and words that read "Threw rock at recess (hit friend)." To me this was a fairly serious matter. I pressed her for more. Sydney very nonchalantly said "Maddie gave me a mean look. So, I threw rocks at her. But it is okay because I said sorry to her and she said sorry to me for being mean." I was blown away. She received a green sticker. Isn't this supposed to mean a "minor" infraction. I had already begun to assume that she must have been throwing rocks at something for fun and accidentally hit her friend. But no, my kamikaze little stone beaner was actually trying to hit someone. To me, this was no minor infraction. To me, this was like red sticker stuff. Call in the parents. Have a meeting. Give her kitchen duty for a month. This was serious stuff.

After reading the words and hearing Sydney's explanation I just can't believe that this is all there is. Am I missing something? Is it now acceptable to throw rocks at people that are mean to you. Because, if it is, the world better watch out because I have a few people I would really like to pop in the forehead. In fact, I might just grab a sack of pebbles to keep handy in my car for when people rudely try and cut me off or for when the fast food lady gives me that look when I ask for extra ketchup. I have to be missing something here but I just can't figure out what it is. There has to be something more to the story. If what we believe happened really happened there must be more action. Sydney can't go through life thinking that she can throw rocks at people when she gets mad at them and then think it is okay because she apologizes. I am confused and I think we will have to chat with her teacher this morning. I don't like it one bit and I especially don't like it when it is my kiddo.

None the less, I punished her all afternoon. They are working on the correct formation of T's in class this week so I asked her to highlight every 'T' in the 4 page Kroger newspaper ad. Then after that she had to memorize her bible verse that is due on Friday and then, finally, she had to do laundry with me instead of watching Sponge Bob or playing outside with her sister and brother. I still don't think the punishment fits the crime but we will find out more today. Regardless, I have one hot headed little rock slinger and one little farter. I wonder what today will bring.

Purpose, take me away.

5:29 AM 10/22/2007

Well, the good news is that nothing tragic has happened. We simply did not have any internet access on Friday morning so I wasn't able to write in my diary. As a full fledged computer nerd there is nothing more annoying but, I know things could always be worse. Over the past few days the kiddos have been pretty good and things have continued as they should. However, we have clearly done something wrong in the whole raising kids thing that I am yet to figure out. While yes we have a pretty good excuse I am less concerned about firmly placing the blame on myself and more interested in finding the answer.

You see, my kiddos ALL know that any ache and pain or acting thereof warrants attention in this family. They have tested all of the parental trigger switches and, over time, have figured out that this is the most effective weapon to get what they want. The problem is I don't know how to fix it. You see, for quite a while, years in fact, we have tried to ignore aches and pains. Well, "we' don't but I sure thought that we acted like we did. The problem is that the kids just keep wearing us down until we respond. It is hard to ever know what the truth really is. To be honest, Sydney has become such an expert in faking pain to get attention I honestly have no idea of whether it is real anymore.

It isn't only Sydney. It is Graham and Ainsley as well. They are all excellent actors. I don't really know whether Graham and Ainsley do it for the same reason. In fact, I suspect the do it just because their cool big sister does it. Ainsley has become a master in very short time. In fact, if I had to pick one who exuded the symptoms of neuroblastoma the best it would be her. If it were based on the symptoms she fakes alone there is no doubt in my mind that she has neuroblastoma. They do it so well it is almost comical. I have had my own fair share of strange looks in the middle of the grocery store when one of them would complain of hip pain or belly pain and I would tell them that it was fine to walk it off. I have even gone to the other side and tried to un-reward and even punish those with pain. I can't tell you how many times I have put one of them in timeout for having pain and discovered in the process that they were faking it. Thankfully, I have never put one in time out when having real pain but I am sure that day will come. More importantly, what message am I sending to them now.

In the end, I know that this all came about because of the attention given to Sydney with small aches and pains. We have been very careful to monitor everything with her. I would hardly think that anyone would be different after being through her journey. Regardless, she trained the rest of the twerp brigade and now we have a whole slew of fakers. I no longer know what we did right, if anything, but I certainly know that we created a monster when it comes to faking pain. Furthermore, I haven't figured out what to do to fix it and I don't know that I ever will. This is a confusing one.

Ouch, my purpose hurts.

2:53 AM 10/23/2007

Yes, you read the time correctly. What can I say? I am mental and having trouble sleeping. Go figure. I have been up responding to email for the last hour or so and I figured it was as good a time as any to jot some thoughts down in my diary. To be honest, I could not sleep because my mind was racing. I am incredibly excited about a new project that I am working on for Lunch for Life.

A couple of weeks ago a was approached by a group of mothers of children with neuroblastoma who were interested in creating a Lunch for Life cookbook. Yes, I know, brilliant idea. I really think I should have come up with it. But, alas, I did not. Thankfully, they came up with it and brought it to me. The next thing I know there were meetings and committees and, well, a bonafide cookbook is on its way for Christmas. Of course, that means that there is a flurry of activity to get everything put together over the next month. We will begin taking presales at the beginning of November and the books should be available at the beginning of December, just in time for Christmas.

Each recipe in the cookbook will honor a child with neuroblastoma. So, if you have a recipe, please send it in our direction. We have a deadline of getting all of the recipes for the cookbook by November 1, 2007. I would love to include as many great recipes as possible. If you have any terrific recipes please send them to recipes@lunchforlife.org.

We need recipes for the following sections:

Appetizers

Salads and Dressings

Soups and Sandwiches

Entrees

Side dishes

Desserts

Kid Friendly Recipes

Celebrity Recipes

Recipes need to include the following information:

Section

Title

Yield

List of ingredients

Instructions

Your name

Your relationship to a child with neuroblastoma (i.e. friend of Sydney Dungan, grandmother to Sydney, etc.)

Name, diagnosis, birth date, and picture of the child if you have it or contact information of where we can get it

Please include the section title as the subject line of your email. This will make it much easier to sort the recipes. Thank you so much for your help. Overwhelm us with great recipes. This is really exciting and I can not wait for Christmas. I know this cookbook will help raise some much needed neuroblastoma research funding and it is going to make a pretty awesome present as well. Thank you in advance for your help.

Apparently cooking can be purpose too.

5:14 AM 10/24/2007

Good morning! Look at me. I slept. I am down right perky which is not only difficult considering my sleeping problems as of late but complicated by the fact that I am a very manly man. Lynley has informed me that manly men are not supposed to be perky. So there you have it, the first true paradox of the morning.

Things are going well around the Dungan household. The squirts are a little nuts but, all in all, they are doing well. The 3 of them have really begun to play well together. Sure, there is always plenty of "he did, she did" when we are in the vicinity but, for the most part, they have really begun to play well together. They spend as much time as possible together outside in the back yard. The love to play make believe in the playhouse, swing on the swings, and, the current favorite, climbing the tree over the neighbor's yard and driving their neurotic dog nuts.

It is fun to watch them have so much fun together and, at a time where we have spent the last 6 and a half years in supervision of their each and every move and having at least one of us participate in all of their activities, it is fun to see them become a self entertaining as a group. Honestly, I love playing with the kids but, it is also quite a treat to sit back on the porch with my wife, enjoy a cocktail, and get to spend some time alone with her. Yes, we can see them. Yes, they come up ever five minutes to complain about one of them bumping into another. Yes, the neighbor's dog is barking at about a 1000 decibels. But hey, after what we have been through, this is romance. Bottom-line, I like spending a few uninterrupted moments with my wife.

Everything else seems to being going well. I am working hard on the Lunch for Life Cookbook and the new Lunch for Life website amidst all of my other projects. Lynley is busy at work appeasing the masses. The kids are all doing well in school and seem to be moving forward in leaps and bounds. I always hesitate to say things are going well because of the fear that it will all be taken away at the mere mention of happiness. But, what can I say? I am fundamentally happy.

It is a deep breath of purpose.

3:40 AM 10/25/2007

Good Morning. This morning I am in a quandary. One of the things about neuroblastoma and its treatment is that they always seems to have some surprises. I think it is partly because children are often so far on the cutting edge of treatment that we often don't know exactly to expect. Furthermore, neuroblastoma is an insidious sneaky disease capable of ruling parents lives with fear.

I was contacted a little over 1 month ago by a family from Australia. It seems like this diary continues to be a source of some information on the ch14.18 trial (ANBL0032), the first antibody trial that Sydney participated on. In fact, if you Google it Sydney's website is on the first few pages of hits. For this reason, I guess, I am contacted fairly regularly by families who are considering this treatment for their child. I don't mind the questions and, in fact, with so few of us with children that have experienced it, I sometimes feel it is our responsibility to share our experience. Regardless, it was this family from Australia that contacted me about a month ago with a list of questions.

Eventually this family decided to put their son on this trial. Although he had the usual pain and the usual symptoms this little guy made it through his first round without any surprises. He then started Accutane as per the protocol roughly 5 days after completing the antibody. Five days after that he started experiencing rather severe pain in his knee and, within a few more days, he had stopped walking completely. Two days ago they took him in for a bone scan and yesterday they received the news that there was abnormality in 3 different places - his clavicle, his thigh, and his knee. The oncologists have said that it could be bone thinning or calcium buildup but I think everyone is fearing that it is probably disease progression.

I, on the other hand, don't want to believe that it is the case. While I can't recall anyone ever have symptoms such as this little boys during this stage of treatment, the numbers just don't add up. None of the spots that light up on the bone scan are original tumor sites. He just received a fairly large dose of ch14.18 and you would think that it would have at least stalled a progression. I can think of all kinds of different reasons for him to have pain and swelling and other anomalies both from the antibody and Accutane. I have seen several children on both of these drugs have some strong reactions. I have seen areas of known tumor swell even to the level that they can be detected radiologically. I have also seen both Accutane and the antibody create severe pain days after treatment, although rarely. What I can't explain as well is the fact that he is no longer walking and nothing seems to explain the three spots of abnormality on a bone scan. Hence, these are the reasons that everyone is fearing progression.

I guess I am writing this in the hopes that someone might have seen something like this. I would love to provide an answer or a direction for this family but I just don't have it. The family has scheduled an MIBG scan but I am sure that is days off. They will have to wait with a child on morphine and still in pain. Any ideas?

There is purpose in Australia too.

4:30 AM 10/26/2007

Good Morning! Wow, 2 days without internet access. What am I going to do? Well, I will tell you. I am going to fly to Las Vegas for the second of the Golf for Life Cup brand of tournaments on Saturday. It ought to be tons of fun, but with the Lunch for Life Cookbook, the new website, and the mountains of emails waiting for me; it is just one more thing in an already over packed schedule. The good news to report is that all of the kids are doing wonderfully. Can you believe that? I know, surprising isn't it.

Today is grandparents day at Sydney's school. Not only is there a play planned but it is also a very cleverly devised way to keep children out of school and parents out of the office. On this special day Sydney is not required to be to school until 9:30 and better yet they will be dismissed by 11:15. I don't really know how you can call this anything less than a day off of school. Regardless, this will give Sydney and I a chance to spend some special time together before I head out of town tonight. She will get to participate in some of her favorite pastimes which include going to the printer to pick up Lunch for Life materials for some of the kids, running into Mira Vista to pick up Daddy's golf clubs, and, her favorite of them all, hopping into Daddy's office for more Lunch for Life materials. It may not sound all that exciting but until we have seen it through the eyes of a six year that should be in school we truly have no idea of what a special occasion it is. Of course, I mean special occasion by the fact that Southwest Christian School starts late at least once a week, finishes early a couple times a month, and gives up altogether at least once or twice a month. So, yes, if by special occasion I mean about once a week then, there you have it, she is pretty easy to please.

Well, I had best be out of here. I have a busy day ahead and if I want to get any real work done it looks like this will be my last shot of the day. Kids are great. Wife is great. Daddy is out of here.

Off to purpose.

5:41 AM 10/29/2007

Good morning! Well, first off, I have to apologize for not writing in my diary for the last few days. The second thing I have to tell you is that it has been a technical difficulty that has kept me from the internet. It just so happens that we were without internet access for nearly a week. Regardless, I can tell you that there have been many adventures. Although I did not post them I did write my diary entries everyday. and I posted them this morning.

Last weekend I was in Las Vegas of all places for the second Golf for Life Cup/Amazing Grace Golf Tournament. I had a great time but I was only there a very short time. In October Lynley keeps me on a very short leash. You may remember that it was at the end of October nearly 3 years ago that I was at a CNCF board meeting in Chicago when I received the call that Sydney was complaining of pain in her foot. That was what began our relapse saga and well over 2 more years of treatment.

You see, she so those events totally differently than I. To this day Lynley does not believe that Sydney relapsed, so she sees all of the treatment and trips to New York as being a huge disruption of our lives and the quality of life for Sydney. It was that fateful night in October that dictated that the next few years would keep Sydney in painful treatments and far away from the normalcy that we all craved for her. Yes, through these eyes I can definitely understand why October is not a favorite month.

On the other hand, there is my perspective. I am less sure of whether Sydney relapsed in October 2004 but I can tell you that I am definitely sure that Lynley and I see the events completely differently. I see the 3 years that would follow as being a gift and quite possibly what might lead to a cure for Sydney. That October changed the tide for us and we went immediately from having no options to a smorgasbord of treatment delicacies ranging from light immunotherapy to your heavier meals such as MIBG, high dose chemo, and another transplant. The key here is that we went from having no options to almost limitless choices. I believe it was this "chance" opportunity that opened the door to these therapies for Sydney. I also believe that if it was not for this continuation of therapy Sydney would have likely relapsed.

Now, I need to make some disclaimers here from the standpoint of someone who is slightly more rational than myself. From a scientific standpoint I have no proof that a continuation of therapy is any better than standard therapy. I have no proof that Sydney would have relapsed had we not continued therapy. In short, I have no evidence that anything that we did actually provided any benefit at all.

What I do have is Sydney and that is about all I can say. Her treatment was her own and for whatever reason her history of treatment is what brought her to the point that she is today. So, for us, for whatever reason, she is here. For myself, I have to be thankful for whatever decisions that we made and the entire journey that brought us to this point. For these reasons, I see October as being just another necessary component of what got us to where we are today. I still cannot guarantee what our future will hold but our past is what it is because of what happened on October. I have to be thankful for it because it is one component of what got us where we are today.

See Lynley and I are both completely irrational and yet completely sane at the same time. We see the events totally differently. We process them differently and we hold them up against different benchmarks. Oddly enough we are both right and she is still here. We have done something right.

Purpose comes in all different flavors.

5:23 AM 10/30/2007

Good morning. Well today opens on a somewhat of a sad note. We are still in the process of replacing Sydney's hearing aids. With all of the sinus congestions and ear infections we have had plenty of trouble trying to get her cleared up enough to even begin the process of getting here ears tested for the new set. After going back and forth with the audiologist and the ear, nose and throat doctor we finally just stood up and said, look, we are getting the kiddo hearing aids and we are doing it now. That doesn't sound so sad does it? Well...

One of the reasons we get ears tested is to see how much hearing loss Sydney has and if her hearing has changed. I am disappointed to report that Sydney's hearing has continued to deteriorate, even nearly 4 years outside of her receiving the ototoxic chemo agents (Cisplatin and Carboplatin). Her hearing loss in the high pitches has worsened from severe and she is now considered to have "profound" high pitch hearing loss. I am saddened for two reasons. Obviously, I am sad for her that her hearing is worse. It is yet another hurdle for her to overcome. Secondly, I am disappointed that I have to report that her hearing has continued to deteriorate this far out from therapy. I know I had hung my hat on the fact that hearing loss "should" not continue to deteriorate after a few years from exposure to the agents and here I am having to report that "should" clearly does not mean always.

Another interesting thing that we learned about from the audiologist is that they have discovered that there is a genetic twist to ototoxicity. In other words, some people are more likely to experience the ototoxic side effects more than others because of their genetics. This would explain why some kids are affected and others are not. Clearly, it still appears that most of us have some level of hearing loss so either the level of drug we are receiving overcomes this genetic link or more of us than less have the genetics that make us more susceptible than not. It isn't something that I would run out and have our children tested for. It isn't like we would choose not to expose our child to Cisplatin if they were more susceptible. At this point, it is still a vital drug to combat neuroblastoma. However, I am glad to see research move forward. Now, if they can just figure out how to turn it around.

I can still shout purpose.

5:26 AM 10/31/2007

Well, here we are on another ghoulish Halloween and me with no internet access. Ordinarily, I would go into a long rambling rant about how the man (namely Charter Cable) is bringing me down and how their lack of adequate customer service or knowledgeable technical support has impacted my life. Yes it is irritating. Yes, I don't like them. And, yes, they are really cramping my style. But, hey, it is Halloween. I have kiddos to outfit. I have candy to give out and, oh yeah, I have the brand new Lunch for Life website to finish and to publish on the world wide web. By the way, please note that, I am behind. Don't tell anyone that the new Lunch for Life website probably won't be ready for its big debut on November 1st and certainly don't tell anyone it was my responsibility. However, you may feel free to blame the great local cable monopoly, Charter Cable, as they have ultimately put me behind schedule.

Regardless, I have outfitted squirts today. I really wish I had more time because I really do love Halloween. I would get great satisfaction of really going all out with the kiddos. In fact, if I had the time and the where with all I would probably turn my house into a haunted one. This year is the first year I really don't have an excuse. Previous year's have precluded me from getting into the spirit. You may remember that every Halloween except for the last has found us inpatient. And last year I was just beginning to get back into the groove by celebrating our first Halloween at home and out of Cook's Spa and Cancer Lounge. This year I, once again, over booked myself and have spent my few free hours working on this website instead of planning the Halloween extravaganza to end all Halloween extravaganzas.

Oh well, I always have next year and with another year in our back pocket the little curmudgeons will certainly be old enough to contribute some child slave labor. In the meantime I will just have to suck it up and be normal. So, for this year, I will limit myself to escorting Belle, Optimus Prime, and Cinderella around the neighborhood and I will do it happily.

I still haven't figured out how to fit all of the purpii in.

September 2007 Posts

5:32 AM 9/4/2007

Good Morning! We survived the holiday weekend. That may catch you by surprise had you witnessed us over the weekend. The kiddos went absolutely nuts and, once again, I find myself somewhat paranoid and quite sure that they are planning something. I smell coup in the air. I know it. They are positioning themselves to overthrow the parental government and taking over for good. There is very definitely something in the air and I think that is the problem. It has been rainy nearly everyday and we have not had a chance to properly exercise the kiddos. Yesterday we even resorted to walking them through the mall to wear them out. Although that seems to be a pretty good method to get the wind out of their sails it also has the byproduct of being quite expensive. Thankfully it was a sale weekend and we made out on some fabulous deals on fall clothes. All in all the kiddos did survive the weekend and they seemed to have a pretty good time even given the limited resources.

Today will be back to reality. The kiddos all go back to school and I will be back to a mountain of work. I can not believe the pile of projects that has accumulated on my plate. I guess the great news is that there are a bunch of great things going on. I am still working diligently on putting together the Golf for Life Cup. It seems that everyday brings more things to do. It will be nice to get this under my belt. There are also many other things going on at the same time. It is almost Lunch for Life season again and there is a ton of work to do there as well. This year we are totally redesigning the site and adding more fun and features for the families that participate. Most importantly I am working on a slew of research projects that are all important and on the horizon. I have spent nearly a year trying to get some new trials moved forward and I think we are finally at a place where we can pull the trigger on several new clinical trials. Finally, there are several of us that are looking at answering some important antibody questions once and for all. For this I am luckily even getting to put on a researcher hat and getting to participate in the design and execution of the study - talk about hands on! With all of this research on the horizon there is a mountain to do with the NANT's trial review board. All in all, it is a very busy time professionally and that is all good. The busier I am the more work that is being done on neuroblastoma and for that I can not complain.

My rest from my purpii will be full of purpose.

5:06 AM 9/5/2007

I don't know what is going on at either school this year but it must be something heinous. I have not figured out who the culprit is but I am pretty sure there must be a dealer at both schools. In short, I think someone is hopping up my kids on sugar. I have visions of kids in back alleys trading toys for sugar cubes. The other day I even found one of the kids walking around with a little Ziploc baggy filled with sugar cubes. I am telling you. It is the new scourge of preschool and kindergarten and the new crack for kids. It is sugar and it is taking control. The next thing we know they will be doing lines of pixie sticks and fun dip. I am telling you, if we as parents do not rise up now we will forever be at their mercy. I experienced it first hand last night.

I noticed something a little funny yesterday afternoon when I brought them home. There was way too much laughter in the back of the car. They were all getting along and as great as that seems in the moment that is always a precursor of things to come. I was nervous and watched them closely in my rear view mirror. The bulk of it started when we got home. There was lots of chaos with kids running everywhere. That is really no different than normal but the fact that they were so darn happy made me leery from the very beginning. The silliness was growing by the second and we had just minutes before Dee Dee and Grammy where to arrive. This was Grammy's last night in town and we were all going out to dinner.

With every passing minute the silliness continued to grow until finally I knew we were truly in for it. They had reached the level I had feared all afternoon. Now they were doing strange things and they had lost complete control. They would not sit still at the restaurant. They were giggling uncontrollably and squirming in every direction. At one point I think Graham even managed to stick a few fries up his nose. Reprimands were useless. Even my best material stuck only for a moment only to be quickly flung by the wayside. There was no decorum. This was total chaos. I would like to say it got better but Graham truly never recovered. He was always completely out of his gourd and most of what we said went one ear and straight out the other. In fact, later at night he insisted I tuck him in - under the bed. It was clear he was still hopped up on the good stuff and there was no getting through. Our last night with Grammy and I had dumb, dumber, and dumberer in their full glory. This was the price of the Sugar Wars.

Don't let this happen to your kids.

Sugar sucks the energy out of purpose. It is the kryptonite of Super Dad.

4:48 AM 9/6/2007

Last night we were sitting on our bed upstairs (all five of us - it is quite a scene). At the end of the week there is always a contest amongst the kids to see who can memorize Sydney's bible verse from school first. You see, on Monday of every week Sydney's kindergarten teacher, Mrs. Lewis, sends home a bible verse. It becomes our job to ensure that Sydney memorizes it before Friday where she will be tested, all by her lonesome, in front of the class. To be honest, I am absolutely amazed that they do this in kindergarten. It seems somewhat advanced to me but I am still awed by squeezable ketchup. What do I really know anyway?

To make a short story even longer, we were all sitting on the bed shouting the verse to get it to sink into the brains of the little ones. We attempt to make the verse stick to their prepubescent brains by making the process as fun as possible. There is lots of shouting, inflection, and arms waving about as we try to be as descriptive and as memorable as we possibly can be. We then begin testing them. That is all fine and dandy but, to really get it to stick and to get them trying as hard as possible, we always incentivize. Last night the incentive was gummy bears.

Lynley first asked the question of the group, "If you can say the whole verse out loud, how many gummy bears do you want?" Graham chimed in with "I want two!" Sydney said "I want three!" And no dunganlet group project would be complete, if not without little Ainsley Eames who chimed in with "I want too many!" She was completed serious. There isn't a time that we hand out candy where she doesn't try to swipe more than her fair share. It seems like every time the candy jar is opened, she digs in with both hands trying to hoard every morsel for her very own. This is usually always followed by a reprimand from her mother "Ainsley! Put that back. That is too many." So, I guess you can say that it is only natural that the exact amount of candy that she always wants is too many.

Oddly enough that is the exact same number of purpii I wanted.

6:11 AM 9/7/2007

Well, well, well. Our first yellow sticker of the year. Sure enough, when I picked Sydney up at school yesterday, her take home folder was emblazoned with a yellow sticker. There wasn't a note but there were a few words scribbled along side the bad behavior sticker. Apparently Sydney was not paying attention during circle time and, worse yet, she also got caught playing in the bathroom. When I asked Sydney what happened she thought she got in trouble because she accidentally busted the lip of one of the other kids on the playground. That sounded like a complete accident but what was bothersome to me was that she had no idea of what she did wrong. For Sydney, this is a common problem. She has difficulty figuring out what she did wrong. She completely understands that she got in trouble. What she can't put together is why? That is the unfortunate part because she nearly always gets in trouble for the exact same reason. She doesn't listen. It is that simple.

If I am being completely honest, I have a pretty good idea of where this psychosis came from. If I remember correctly, I knew everything there was to know in the world at the age of six. After all, that is how I became so brilliant. Absolute genius starts at a very young age. Of course, from Sydney's perspective I am not really all that clever. Furthermore, I am quite certain that if she ever did accept the fact that I was once as brilliant as she, one would also have to assume that I developed a very serious leak at some point. That is the only thing that could possibly explain how I could know so little now. Although funny, this is exactly the point. Sydney does not listen because she thinks she knows better and she thinks she knows when the rules should apply to her and when they should not. Therefore, if she is doing some that she thinks is fine and she feels is reasonable to do then it can't possibly be wrong, even if she was told not to do it in the first place. Don't tell her mother but I married someone with the exact same perspective.

None the less, my next game is to figure out how to make this sink in for Sydney. As it stands, she still has no concept of what she did wrong. She knows her teacher "thinks" she did something wrong. She knows her parents have punished her for believing her teacher. She has even gone so far as to promise not to it ever again. The problem remains. She still thinks she is in trouble because she accidentally bumped into someone on the playground.

She just doesn't listen:)

It seems my purpose thinks it has its own purpose.

5:40 AM 9/10/2007

Good Morning! I am happy to report that Sydney survived Friday at School. In fact, she even received two blue stickers and a smiley face. She apologized to her teacher and did her best to make amends. I think it has finally soaked into her brain that she received a yellow sticker because she chose not to listen. Time will be the true sign of whether it made its way into her gray matter.

The weekend was pretty interesting. Sydney's teacher Mrs. Lewis sent us home with plenty of homework. As it turns out this was Sydney's weekend to keep Betty Bear. As far as I can tell, Betty Bear is a way for kindergarten teachers to teach parents how to be more responsible and efficient with their already overburdened schedules. None the less, we took on our weekend project with a smile. All joking aside I really have not been able to figure out what the purpose of this project was. I am sure there is someone out there in internet land that can let me know what we were supposed to instill in Sydney with this little project because I am clueless.

The task was for us to take care of a large (3 foot) stuffed bear for the weekend. We were apparently supposed to take pictures of it participating in activities and write a little story in Betty's journal about the various things that we had done together. So, we did just that. On Friday evening I lugged the huge bear with us to Joe T. Garcia's for dinner with the Robertsons. We took pictures of Betty Bear "eating" dinner and listening to the Mariachi band. Later that night I lugged it back home and we took pictures of Betty Bear with the kids as we got them all ready for bed. It was somewhat of a nuisance so it ended up sleeping in the rocking chair in our bedroom.

On Saturday, Betty watched us play in the pool in the morning and then we took her with us to a party that Sydney's class had over at one of the other parent's houses. Betty Bear spent most of her time in the house watching college football while we watched the kids swim in the pool. Ironically, this led to a rather embarrassing moment. Apparently Sydney has been stealing my Golf for Life Cup materials and giving them to all of her classmates. Furthermore, she has told them to tell their parents to come to our golf tournament. Although I thought this was a pretty clever guerilla marketing technique and I was appreciative of her efforts to help her daddy, it did lead to a few uncomfortable moments. Many of my discussions with other fathers at the party led to "oh, so that was you" which left me feeling less than comfortable. Regardless, who knows, maybe we will get lucky and they will decide to play.

On a side note I finally realized that I had typed the wrong email address when I originally told everyone about the golf tournament. I am still looking to fill spots for volunteers, golfers, and sponsors. I would appreciate any and all help. The tournament will be on Monday, October 8th, at Mira Vista Golf Club. I don't want to overstep my bounds but I have worked pretty hard on this tournament and I can tell you that, in all due modesty, that it will be the greatest charity golf tournament in the history of the world. Yes, I know, that is a tall order to fill but, I have truly set my standards high. This will be like no other. More information about the tournament can be found at http://www.GolfForLifeCup.org and if you have absolutely any questions you can email me at mdungan@LunchForLife.org or call me at (817)846-6085. Additionally, even if you don't play golf, the after party will be something special. We will be having an incredible dinner and auction. We have even booked a live band. You might even get to see a group down on the eighteenth green try and make a shot for $1,000,000.00. Tickets are available on the website. Remember the purpose of all of this is to raise money for neuroblastoma research but that does not mean we can't have an incredible time. Please consider joining us.

Wow, I got off track. Sorry for the commercial interruption but it is important or I would have not bothered to mention it - back to Betty Bear.

After an hour or so of swimming and a cook out we finally peeled Betty Bear off of the couch and away from the Texas A&M game to take some pictures with kids around the pool. On Sunday we were finally fed up with Betty Bear's unappreciative attitude. I tried putting her to work on the laundry with me but she just got in the way. I also took her with us to the grocery store but she seemed content to stay in the car. I was sure someone was going to call the cops when we left her in the car. Regardless, after it was all said and done, Lynley and I were responsible for printing out all of the pictures and writing the story of Betty Bear's weekend at the Dungan's. Sydney participated a bit on the discussion but seemed happier just to sit at the kitchen table and read her books.

In the end, I still find myself confused. I have no idea of what we, Sydney included, were supposed to get out of this activity. Don't get me wrong. I tried to make this a learning experience. I just could not find much and I still feel as though this was busy work. Am I missing the point? Am I missing the purpose?

Because I have a lot of purpose you know.

6:28 AM 9/11/2007

Good Morning! This will be a relatively short update as I had a late night last night. I was on a conference call until about 9:30 last night, worked a bit after that and then, for some reason, the kids thought it a good idea to wake up about every hour or so. Graham has been going through a rash of bedwetting lately. It seems as though he is making it through only about half of the nights. I am not too terribly concerned about it. From what I understand it is a stage that kiddos can go through. It has, however, put my laundry skills to the test. It seems as though the loads never stop. The good news is that I am getting really good at folding fitted sheets.

Sydney came home yesterday with a plethora of stars, smileys, check pluses, and blue stickers. Sydney went out of her way to be an incredibly good little girl and she was rewarded in spades. As I have written many times before, it is important to me that we instill a sense of thinking of others before we think of ourselves. This is a difficult concept to instill in children six and under but, every once in a while, we get a indication that our lessons are not going unnoticed. One of the reasons Sydney received so many special commendations yesterday is because she was doing just that. She was thinking of others before herself. On one occasion she helped another student clean up their work area after she had cleaned her own. On another occasion she stopped in the hall on her way out to the playground after another child had spilled the contents of their pencil case all over the hallway. On yet another occasion she used one of her cherished Band-Aids (she keeps spares) to put on the scrape of another child.

While I know none of this is life changing and I know it isn't as glamorous as making the winning touchdown in the big game or getting an A on the big test ,this is one of her more meaningful accomplishments this year. We are making a good person. In my grade book that is an A+ and it makes my heart happy.

I am proud of my purpose.

6:04 AM 9/12/2007

Good Morning! I hope all is well. There is nothing much to report today. The kids are all doing fairly well. This afternoon both Sydney and Ainsley have doctor's appointments. One of the lingering issues that we have had with Sydney, spanning the last 3 sets of scans, is continued congestion. It has been so much so that this is one of the items that is routinely mentioned on the reports from her CT scans. This issue has also prevented her from being tested for new hearing aids. We can't seem to keep the congestion, infection, and gunk out of her head long enough to get her ears tested in a manner suitable for what she needs done. We are of the opinion that we need to get this dealt with once and for all. So, we will begin the process today of not only getting something to clear it up again but also beginning the process of hopefully getting it to go away for good. As I have explained to Sydney, it is a bad case of buggers on the brain. She, by the way, is not very appreciative of that description but Graham finds it to be a perfect explanation.

Other than that there is little excitement around the house. I am still working hard on putting this golf tournament together. It will be a great time but there is a lot of competition for golfers at this time of year. In the metroplex alone I am competing with 6 other golf tournaments that I know of and I am sure there are many more. I am sure these other tournaments are important as well but, from my perspective, the GolfForLifeCup is the most important so I will have to work hard to get the word out. The good news is that just about all of the details have been worked out. It will be an incredibly good time and a memorable tournament. I just have to get people into the door and to take a risk on a inaugural golf tournament to see how truly incredible it will be. I think once we have completed this first tournament everyone will want to be a part of next year's festivities.

The kiddos have been busy as well. They spent most of last night out in the playhouse planning their next coup. The had an incredible time together swinging on the swing set, racing down the slide, and climbing all over the two story contraption. Lynley and I were not invited to participate. In fact, we were asked not to. I am glad they are having so much fun without us but it left Lynley and I a little disappointed that they were not in need of us.

Well I had best be off. Today will be jam packed with details.

I still need my purpose even if it thinks it does not need me.

6:15 AM 9/13/2007

Yesterday was not what it turned out to be. In fact, I was just left with a huge knot in my stomach. At about 2:30 pm we picked up the kiddos and took them to Dr. Debbie's for good measure. You may remember from yesterday's journal entry that I had planned on taking Sydney and Ainsley to the doctor. Well, actually, we were taking Graham and Sydney. That should give you an idea of how unconcerned I was about Graham. I knew we were taking Sydney because of congestions issues and I though we were taking Ainsley for some of the same issues. We wanted to get them checked out before we headed out of town next week. The last thing we wanted was sick kids on a Disney Cruise. Well, regardless, I was wrong. Lynley wanted to talk to Dr. Debbie about Graham. She wanted to get his leg pains checked out. Neither of us were particularly concerned and pretty much always wrote them off as growing pains. We just wanted to be sure that it wasn't anything more sinister. So, there you have it, sniffles and growing pains. No big deal, right?

Sydney was the first to get the once over. As Dr. Debbie gave her a careful examination, she played 20 questions with us. One of the things that came out of this was the fact that Sydney had some significant belly pain throughout the day. She had complained on the way to school. I filed it in the back of my mind as I do with most pains but did not get alarmed as I generally like to see some recurrence before I get by daddy feathers ruffled. (I have trained myself, otherwise I would be more of a mental case) As it turns out, the painful episodes continued throughout the day. Dr. Debbie felt her belly and although she said she did not feel anything "tumorish," she did feel something in the bowel. This could be constipation which was our first thought but it could also be something else. The next thing I knew we were checking her urine and had marching orders for an abdominal x-ray at Cooks. The urine came back quickly and apparently there were some white blood cells in the urine which is a potential sign of infection. This was eerie. This is exactly how IT all began. This could be nothing. It could be everything. I did not sleep last night.

As if all of that was not bad enough, Graham was up next. Dr. Debbie gave him the once over as well. She bent Graham in twenty different directions and checked all of his joints. Graham just sat there and giggled. We then talked about his latest rash of bedwetting. That was about the extent of it. The next thing I knew she was flipping him over and looking for skin defects on his spine. She did not find any hairy patches, fatty lumps, birthmarks or dimples. She gave his entire backside a good once over. The next thing I knew Graham had orders for several labs and 4 different views of his legs and spine. So, have you figured it out? Leg pain, bladder control, looking for abnormalities of the spine. Dr. Debbie is trying to rule out Spina Bifida. We went in with growing pains and now we are trying to rule out Spina Bifida. Not what I was looking for.

Well we hustled out of Dr. Debbie's and made our way to Cook's. The kids were all spectacular for their labs and x-rays and by about 5:20 pm we were back on our way home. Now we wait.

Purpose give me strength.

4:59 AM 9/14/2007

I will tell you. After an utterly incomplete night of rest and a full day of waiting I was not particularly sane. I guess that is why, when Dr. Debbie called yesterday afternoon, I found such great humor in the fact that Sydney was completely full of poo and my son was a bed wetter with "growing pains." I could not stop laughing. Odd reaction, I know. But I can't tell you the last time I felt such utter and complete joy. I was like a school girl and I could not stop giggling. It felt so good. I think everyone was feeling the same way. When we would tell others the news they all got a huge smile and, for some unknown reason, they all had the same thing to say "Sydney is full of sh#@. Just like her father!" Yeah, ha, ha. I was too excited and giddy to give much care or to point out that I did not believe that particular trait was hereditary. I was just so happy and thankful. An all too familiar weight was once again lifted off of my chest and I could breath again. I know it was the many prayers that so many people lifted us up with. Thank you.

All of the tests are not in yet but it does look good. Sydney is severely constipated and there is a substantial amount of stool in her bowels. She is jam packed. We have started flooding her with apple juice and Miralax. Hopefully, we can get her cleaned out before our departure. I doubt she would be as happy as I to share this simple fact with the world but I am happy to announce that we have already made some progress. She had her first bowel movement late last night and we scored some relief. I am sure that we still have quite a ways to go but I was happy to see progress - a big pile of it.

Graham's tests were only partially back but I am happy to report that they were able to rule out spina bifida. Many people wrote and asked "Spina bifida? I though only infants got spina bifida?" While that is generally true for many of the most severe forms of Spina Bifida that we hear the most about, there are other forms as well. The form that we were concerned about for Graham was spina bifida occulta. It is far less severe than the other forms and is usually manageable and can, on occasion, be corrected by surgery. Although the damage to nerves cannot be reversed the effects can be dealt with fairly effectively. Now, I am not a doctor and my knowledge just comes from a few hours of reading so take it with a grain of salt. They say that this form of spina bifida actually effects 5 to 10 percent of the population. This is one of the mildest forms of spina bifida although the degree of disability can vary depending upon the location of the lesion. In occulta there is no opening of the back, but the outer part of some of the vertebrae are not completely closed. The split in the vertebrae is so small that the spinal cord does not protrude. Many people with the mildest form of this type of spina bifida do not even know they have it, or symptoms do not appear until later in life. People with spina bifida occulta may suffer from a tethered cord (diastematomyelia), when the spinal cord gets trapped below the affected level of the growing spine. This may cause neurological problems of the legs and bladder, hence, the reason we were concerned. Although this would be the "good" form to have there is still no cure for nerve damage due to spina bifida. Many are plagued with lifelong numbness, pain in the back or legs, weakness in the legs, gradual deformities, and bladder and bowel problems. The great news for us is, although this is very fascinating, it is not a problem for Graham.

We are still waiting on a few of Graham's other tests. I know we are lacking the interpretation of the x-rays from his legs. I don't know why these were not read at the same time. If I was even the slightest bit more paranoid I could surely come up with all kinds of worries but, for the moment, I will be content to just wait them out. Hopefully, we will hear something today. Other than that report this will most likely be the last entry that you see from me before we get back from our Disney Cruise. I may be wrong but I don't think that they will have internet access. Until then, I am sure we will be creating some wonderful Dungan twerp memories to share.

Thank you for the prayers.

I am off to my purpii.

4:51 AM 9/21/2007

Home, sweet home. We made our way back to Fort Worth late yesterday. By the time we got home we were all completely and utterly exhausted but filled with tremendous memories of our Disney cruise. My mind is still fluttering in amazement. In short, I can begin by saying our trip was nothing short of magical.

This was not only the first Disney Cruise for the kids, it was also a first for us parent types. Although Lynley and I have both been to various Disney parks before we had never experienced one of their cruises. So, for us, this was an incredible first as well. Now, I should start by saying a have been lucky enough to live a fairly priveleged life. I was not born with a silver spoon in my mouth but I have been lucky enough to travel as a child to some incredibly posh places. I have stayed at a few hotels that are considered some of the world's best. I tell you this, not to brag but to frame the rest of what I tell you into perspective. For me, this Disney cruise was perhaps the best vacation that I have ever taken. It was first class and I don't think I have ever been taken care of so well. From the person that turned down our beds at night to the guy mopping the floors at 4:00 AM everyone was at the height of courteousness and helpfulness. I felt like a movie star. In fact, the only even moderately questionable experience was the food and even that was not bad. It was just ordinary. I felt like I was eating at Bennigan's. It wasn't bad. It wasn't great. It was just there. Especially when compared to the level of service and the entire aura of the ship the food was glaringly lacking. It just did not stand up to the rest of the experience. With all of that being said, I still have to rank this up there as one of the greatest trips of my life and I will be surprised if I ever take another vacation that does not have the Disney stamp of approval. It was just that incredible.

But really, who cares what I think. Isn't Disney about what the kids want? Well, I will certainly be glad to share but even though my kids had an incredible and unforgettable trip I still believe that I had the best time of all. Over the next few days I will try and share all of those memories so that we never forget them. For starters, here is a picture from our first afternoon on board.




Disney has purpose too and it was us. More on Monday!

5:22 AM 9/24/2007

Okay, so you will have to bear with me. This is how I look at it. It is Monday, just 4 days since we returned home from our vacation on the Disney Cruise. I have already forgotten details. It is time that I sit down and capture everything from memory so that it doesn't just float away. It was an incredible trip and one that I would like to remember forever - not just for the kids, but for myself as well.

I alluded to the fact on Monday that the Disney experience was wonderful. I think part of the reason for this is that they do such a good job of dealing with travel anxiety. For many of their guests these trips are the very first of their kind and for others much has changed since there last excursion. It is only natural to worry about what comes next. Will my luggage really arrive? Which bus do I get on? What forms do I need to fill out? How do I get the kids registered in activities? As I sit back and think about it, many of these questions were reeling through my mind. Yes, I am anal but that is not the point. Focusing on these items took away from my enjoyment. This is what Disney did so well. From the earliest moments of our vacation they were already answering our questions. I really wish we had something like this for neuroblastoma. Think about it. Some one to take you through it with your family. Someone to answer questions and give you hope. I will have to take some time to figure that out but for now. Let's get to the memory banks.

The Dungan five were up early for their trip to Orlando - 4:30 to be exact. We had a 7:30 AM flight. All of the packing had been completed the day before and this morning was just about getting the sleepy little curmudgeons out of bed and dressed for their journey. They were all tired. For a crew that normally gets up about 5:00 AM on a normal Saturday or Sunday, you would think this would be easy. But no, whenever we need them to get up at a certain time they are always difficult to peel out of bed. It is one of the weirdest phenomenons I have experienced. It is some kind of clever parent torture. Regardless, after some juice and proper prodding we had them all up, dressed, and dapperly coifed. DeeDee was nice enough to provide our transfer service to the airport. She arrived at about 5:30 AM if my memory serves correctly. I had already packed the bags into the Texas Cadillac. We loaded up and we were off. Our journey had began.

Almost immediately we were into Disney mode. We had a stack of documents with specific instructions. The first was to place some stickers on our luggage. After checking them at the curb this would be the last time we would have to think about our luggage until it magically appeared in our stateroom on the ship. Think about it - traveling without having to juggle five bags of luggage with 3 scrambling twerps, a stroller, and a handful of carry-ons. Yes, my wife is the terminal over packer. In fact, had I wanted to. I could still be living out of my suitcase and could probably do so throughout the month of October with a few extra pair of underwear to spare. Regardless, this was living the life After traveling back and forth to New York with the family I can't tell you how awesomely handy this little feature of our trip was.

On the plane the kiddos were perfect. They are such fine travelers I hardly ever worry anymore. In fact, I even got to take a moment to myself to read the American Way magazine and come away with some great ideas about Lunch for Life. Yes, I got bonus ideas on a vacation. How awesome is that? The kiddos sat and colored and jabbered to one another. They had great fun and Sydney even made friends with another little girl sitting behind her. Yes, she is one of THOSE kids. She loves to make friends on the air plane and usually does fairly successfully. I have no idea where she gets this overtly social behavior from.

Once we arrived in Orlando we got out our trusty map. As I mentioned earlier. we did not have to worry about luggage so we simply made our way to the 'B' side of the airport. We then scuffled down a couple levels of escalators and made our way to the Disney section of the airport. This is where our journey was truly beginning. It took a while to figure out which line we had to make our way through but after asking a question of one of the many friendly people there dawning the red Disney uniforms we quickly made our way through registration and to the next line. As a quick travel trip for the little ones, I have a nugget for you. Whenever we are in a public place like an airport where waiting is involved I always bring some treats with me. I then use contests to win the treats. One of my favorites for waiting is the touching game. I pick some inanimate object and tell them all to hold it. Whoever holds it the longest wins the prize. I can usually get them to stay in the same place for 10 or 15 minutes which is a huge accomplishment if you have ever traveled with 3 kiddos 6 and below.

After about 15 minutes of waiting in bus line 10 it was finally our turn to make our way out to the bus. We gave our carry-on luggage and stroller to the driver to place under the coach and made our way onto the bus. It was plush. I can't really remember being on a nicer bus. There were video monitors ever 3 or 4 rows of seats and the bus itself looked like we were the first that had ever been on it. Is was spic and span. I would have continued to assume that this was a brand new bus had I not seen several in the exact same condition. As we boarded there were already Mickey Mouse cartoons playing. Every few minutes our tour director/bus driver would step aboard and give us an update on what to expect. Not long after that we were on our way. We had about a 50 minute ride before we reached our destination. During our trip we watched a video which explained everything that we would need to know to get onto the ship. We learned exactly everything we would need to know and exactly which order it would happen. We even got to see Mickey and Minnie go through the process in real life. By the time we arrived, any travel anxiety that we once had was gone and we simply went through the motions. I filled out the forms and the forms and registered our stay. I received our special cards (key to the world cards) that would become our key and cash for the next five days. We also registered the kids and received their arm bracelets and a beeper for us just in case they we were ever needed by one of our children.

The next thing I knew we were embarking. Just like in the Love Boat, we made our way up the bridge and onto the boat. It was really happening. Perhaps tomorrow we can start the cruise.

I learned a lot from Disney. They have purpose too.

5:13 AM 9/25/2007

Needless to say the kids eyes were about as big as they could get. I always notice the eyes of both kids and parents in Disney's commercials. The expressions on their faces when they step into the world of Disney is truly priceless. It is a look of awe and it was written all over our faces. Once we had all gathered at the top of the bridge they announced our names as we made it aboard. "Welcome the Dungan Family!" thundered across the entry way. To our left where two magnificent stairways that had a Disney greeter (cast member) on nearly every step, and as we made our way further into the room we were greeted with applause and finally our personal greeter. She walked with us through the large hall and updated us on our personal schedule. We learned that our room would be ready in roughly 30 minutes and that we could enjoy our lunch while waiting. She escorted us down a hallway towards one of the restaurants.

I was not ten feet down this hallway when I was greeted with the tallest mug of beer I had ever seen. For those that don't know me well that is quite a statement. Fact is, I like beer, just about any kind of beer. Warm beer, cold beer, dark beer, light beer, you name it. Beer is my friend so it was only appropriate that I indulged just a little bit. The next thing I knew I had three kids, a wife, and a nice cold mug of beer. Life was good.

The next stop down the hallway was the wine table. Now, if I like beer, Lynley loves the grape and this was our opportunity to purchase our wine list for our dinners. It was only fair that we purchased one of the wine packages for her now that I had a nice cold beer in my hand. They did plan this well didn't they. So, the next thing I know we had purchased a wine package. Now, of course, this isn't that yummy fresh stuff that we usually get out of the box at home. This wine was the old stuff. It came in bottles. It did not even have a screw top. This was the kind of stale old wine that came with a cork. I guess you get what you pay for:) Wow, twenty feet from the entrance and we had already lined the parents up. Was this a Disney Cruise or a cruise for parents? Regardless, we finally made our way down the length of the hallway.

At the end we were greeted by another couple of cast members who invited us into one of the many the restaurants on this deck. At the door we were handed antiseptic wipes. This would have been a little strange had it not been for the video that we had watched on the bus on our way over. We have all heard of sick cruise ships. It seems almost every year their is a story of some cruise ship where everyone gets sick. Well, Disney has gone to extreme efforts to ensure that they never run into this problem and they have worked closely with several organizations to ensure the safety of their passengers. For this reason, dispensers were placed at the front of each restaurant and throughout the ship for us to scrub up before entering. This prevents the spread of infection or any other contaminates. To a family that has been through the world of cancer this is a handy little feature and did not strike us as out of the norm. This seemed so natural but I guess foreign to those that were not used to this level of disinfection. I was pleased to see their commitment to cleanliness.

The restaurant was Caribbean themed. There were bright colors everywhere and a large buffet was centered in the front of the room. From the middle of the room where we sat we could see out both sides of the ship. The kids eyes were still large round circles and I was still reeling from behind the frostiness of my frothy friend. We had arrived. This was vacation.

Now if you are going to have great points to any vacation you also have to have low points. You must realize that this is all relative. I have said many times that this cruise was absolutely spectacular. However, if I had to pick an area that was my least favorite it would have to be the dining. This is not to say that the dining wasn't good. It was good food. It just wasn't great and when you compare it to the level of everything else on the ship it left me looking for more. Again, it wasn't bad. To me it was like Bennigan's. It was good, not great, and not particularly memorable. It certainly is not something that I would tell my friends about. I have always heard that cruise food was so spectacular. I was expecting Del Frisco's. What I received was Bennigan's. Again, not bad. Just not what I was anticipating and when you compare it to the level of service and everything else about our cruise experience it appeared to be lacking. Wow, am I a snob or what? Shame on me.

Regardless, the kids snarfed down lunch and were ready to begin exploring before I had even sat down to enjoy my prime rib slivers, salmon, bake potato, and salad. The kids were ecstatic and now a few hours beyond their nap. We made our way quickly up the elevator and to our stateroom on the 8th floor. For better or worse our stateroom was pretty close to the elevators. This might be a problem for many but not for us. In our entire trip I never heard any traffic outside of our stateroom and I was never bothered by any noise whatsoever. Our room was cruise ship small but I never felt cramped. In fact, I have felt far more cramped in the Ronald or in a hotel that I ever did in our stateroom. It was cleverly designed and, to be honest, I am pretty sure that I had more room to do the things a family of five needs to do than I ever have in a single room. I never felt cramped and I don't think anyone else did either. The room was plush with enough room to sleep five comfortably. There was a queen bed and a couch which flipped out into a single sleeper. Above that was a bunk that flipped down from the ceiling to sleep another. In the far corner there was another bed which could be pulled from the wall. We never even used that one. The room also came equipped with two bathrooms. Each had a sink and one housed the toilet while the other housed the tub and shower. In the main room there was a roomy closet and enough drawer storage to suit our needs (keep in mind my description of our luggage.) Finally, there was a television, a mini fridge, and enough cubbies and cabinets to keep our hearts happy. There was also a curtain in the middle of the room that could be drawn to separate the bed area from the living area. Finally, if all of that was not enough space, we also had a veranda that could seat two and allow enough room for 3 rugrats to mill around comfortably. It was not the Taj Mahal but it was perhaps the best designed space I had ever been in. I has fascinated by the clever architecture. The kids were enamored with the bunk beds. Lynley just thought that we all had too much sugar at lunch.

We decided to go exploring. Although we could not hear it from our room the deck above was where the party was happening. This part of the ship includes three pools; one for children, one for families, and one for adults only. It also includes two restaurants and several bars and fast food areas. Sydney favorite part of this floor was the self serve ice cream bar and the self serve drink bar. By the end of her time on the ship she will have mastered these two parts of the ship. Up on deck nine we also found the water slide, the ships giant television, an arcade, a basketball court and enough ping pong tables and shuffleboard courts to keep everyone busy. It was truly spectacular. I will have to coerce the pictures from Lynley to show you. It was incredible. While we were up on deck Goofy's Pool had been covered with a retractable dance floor and a party was getting ready to take place.

Yikes, there I go again running out of time. There is so much to remember and so little time.

Until tomorrow when purpose will raise its head again.

5:57 AM 9/26/2007

At about this time we were approaching 4:00 PM. This is important to note because at 4:30 PM the entire ship had to participate in an evacuation drill. We made our way back to the stateroom and began the process of of getting all of the kids outfitted in life preservers. The funny thing about this exercise is that, with three rugrats to bundle up in large rectangle life preservers, it seemed pretty clear that it was going to be tough to get them all on before they could take them off again. This was one of those episodes from the 3 Stooges. I would put a life preserver on Ainsley and then begin the process of putting it on Graham. By the time I got it on Graham, Ainsley had removed hers and hid it under the bed. I would then start helping Sydney put hers on and Graham was taking his off. It would have been pretty funny to watch. Regardless, we eventually had them all outfitted and began the process of making it down the stairs to deck 3 where we were gathering for the life boats. The only problem with this was (a) we were going down 5 flights of stairs with (b) a 2 year old, a three year old, and a 5 year old and (c) only one of them could walk due to the bulkiness of the life preservers. This was complicated by the fact the Graham refused to be carried and wanted to "do it myself!" Somehow, after being passed by just about the entire ship, we eventually made it to deck 3 and our evacuation point. I might also note that it was pretty humid and roughly 90 degrees. Oh, this was super. As we sat and listened to the direction of the Captain; Larry, Moe, and Curly decided to play bumper twerps in their life preservers. Here I was being a perfectly well behaved Dad, standing quietly in my line and my little curmudgeons were bumping each other all over the deck. I took this opportunity to very loudly point out that those misbehaving kids were not my own. That earned a dirty look from Lynley and some smiles and jeers from the crowd. Apparently they had seen me walk in with them. After a few minutes of draining all of the sweat from our bodies, they dismissed us back to our stateroom. They asked that we keep the life preservers on until we got back to our room. We made it up the first flight of stairs in about five minutes. After that off they came and the kids happily jaunted up the next four flights.

By the time we made it back to our stateroom our luggage had arrived. We also met the cast member that would be taking care of our stateroom. He introduced himself and gave us the lay of the land. He addressed the kids and very nonchalantly asked the kids about some of their favorite things - colors, etc. After getting the official grand tour it was decided that I would take the kids up to the party on deck 9 while Lynley quietly unpacked the bags. By the time we got up there the party was in full force. There was loud music and everyone was dancing around Goofy's pool where the dance floor had been place over the pool. There was cast members dancing all over the stage and they were even dispersed throughout the crowd. The kids were in awe. So much so, I could not really tell whether they were having any fun at all. Ainsley was dancing wildly with her arms in the air and her eyes focused on her feet. Sydney sat clapping on my shoulders and Graham just stood there with his mouth wide open attracting flies.

On stage there were many introductions. We were meeting all of the ships crew and there were even some special surprises with some character appearances. Goofy and his son Max even made it on deck. It was not long before Lynley joined us and we all danced together. It was quickly encroaching on 5:30 which was our time for dinner. Before the party was over we made our way back to the stateroom to change. We had not noticed with all of the commotion but looking out on the veranda on our stateroom we noticed that the ship was already moving and we were making our way out to the open sea. People lined the shores and waved as we headed out. The kids took a few minutes to wave and yell goodbye to all of those that had gathered on the shoreline. It was not long before we were in open water.

Our first dinner was at Triton's which was the fanciest of the 3 restaurants that we would be grazing at. Tonight we would meet our serving team who would be following us from restaurant to restaurant for the remainder of our stay. Rowena was our head server from the Philippines and Alex was our assistant server from somewhere in South America. They would do an excellent job ensuring that we got exactly what we wanted whenever we wanted it. As with everything we had experienced before, our servers were outstanding and always willing to take a minute to entertain the kids. They were full of magic tricks and all kinds of little entertainment gambits. I was amazed.

As I have mentioned previously the food was okay. It was not spectacular but it certainly was not substandard. The first night I would order one of the fish dishes. It was good but not memorable enough for me to tell you what it was. The kids had there own menu and enjoyed a cheese pizza, hot dog, and macaroni and cheese. They could not have been happier their choices.

After dinner we made it up back up to our stateroom to change before spending about an hour or so swimming in the Mickey Mouse Pool. At about 8:00 we made our way back to the room were we found all of our beds turned down. However, they weren't just turned down. Sydney's yellow (favorite color) blanket was draped across her bunk which had magically appeared from the ceiling. Her stuffed kitten (favorite animal) was tucked in cozily. On the bunk below, Graham's blanket, a Superman (favorite super hero) pillow case, had been placed on his pillow. On the center of our bed we found a cozy little space architected especially for Ainsley draped with her pink blanket. On the foot of the bed was a large towel sculpture of a snake with Lynley's glasses sitting over it's eyes. This was my first time seeing such incredible towel origami but I understand that it is somewhat of a trademark for Disney stays. I was blown away. Just like everything else I had experienced so far this was starting out as the best vacation I had ever had - with or without the kids.

We giggled ourselves to sleep.

I tell you this was purpose of a different kind.

4:51 AM 9/27/2008

Good Morning! That was how I felt when we woke up the next morning. We had already arrived in Nassau, our first destination. Lynley and I were both up well before dawn trying to plan out our next day. One of the great features of the Disney cruise was the Personal Navigator. The Personal Navigator is an itinerary of all of the activities that are scheduled for a particular day on and off the ship. Although there is plenty of information to be found on the pages there is also a "TV guide" schedule of the day. In this way, you have access to every 30 minutes of the day and you know exactly what is happening. Furthermore the activities are further divided by their age appropriateness. After ogling the pages for a few minutes we tried to isolate the activities that would be appropriate for the entire family. Unfortunately, we were somewhat limited by Ainsley and Graham's age. Many of the activities that we thought they would enjoy they were simply to young for. There would be no swimming with the dolphins, for example. In the end we chose to take a trip on a glass bottom boat a bit later in the day. This was an excursion at about 10:30 AM. There were also several activities planned on Paradise island, the home of Atlantis and the rich and famous. Here there were hundreds of things to do but unfortunately we would have had to commit an entire day. We wanted to visit the aquarium but in order to do it we would have had to skip the kids naps. Furthermore, being our first day we wanted to stay close to the ship. Ironically there were still some pretty neat activities scheduled for the kids on the boat. There was an opportunity for them to make a hat with Peter Pan and another opportunity to learn to draw a picture of Mickey Mouse from the mouse himself. In short, for the kids it looked like the activities onboard might be even more fun than the activities in Nassau and Paradise island. Nassau is known for its shopping which we knew would probably not appeal to the kiddos. In fact, there had been classes on board the day before about how to shop for jewelry on the island. This morning the class was even being replayed on the television in the room. There was also a channel which did an excellent job of explaining all of the different excursions. In the end, we decided to try a bit of it all.

It was not long before everyone in our room was up and milling about. The kids were excited to begin the day. Everyone took a shower and we were off to have some fun. We began the morning with breakfast in one of the restaurants on deck 3. They seated us next to the window where we had a first class few outside the ship. There was a large breakfast buffet with just about everything you could think of. For the most part the kids were far too excited to eat but that did now stop Lynley or I. We stuffed our gullets and then made our way out of the restaurant.

Our first stop was the excursion desk to get tickets for our excursions. We had about an hour and a half to kill before our glass bottom boat excursion began. The kid areas had some fun activities planned so we elected to try out the babysitting services and kid activities for a bit. Unfortunately, all of the kids were going to be separated. Ainsley was only 2, so she was delegated to the nursery. Graham was part of the group made up of 3 and 4 year olds that would be making hats with Peter Pan, and Sydney was part of the 5 - 7 year olds that would be drawing Mickey Mouse. Believe it or not, Sydney is the one that was having the difficulty being split up. Both Ainsley and Graham went without even a care. In the end, Sydney refused to be separated from Graham and she ultimately spent the morning with the 3 and 4 year olds. Regardless, we thought it was worth a shot to see how they enjoyed these services. In the meantime Lynley and I, complete with our beeper, bolted from the ship and enjoyed a bit of Nassau.

The main strip was less than a ten minute walk from our state room. Lynley and I made a quick round of the shops. There was Cartier, Coach, Fendi, you name it. I could see that this was going nowhere good fast so I cleverly navigated us down an alley of shops with knickknacks such as t-shirts, homemade "shell" animals, and other gimmicky overpriced crap. Realizing that Lynley was making her way through this alleyway way to quickly I ducked into one of the last shops to buy a hat. There we met the store owner who took great enjoyment in talking to us. In fact, she really did not want us to leave. In the end we simply ran out of time and had to make a beeline back to the ship. It took about 15 minutes to make our way back through customs and onto the boat were we found the kids about ready for their parent's again. We made the rounds and herded them back off of the ship. It was time for our glass bottom boat tour.

The glass bottom boat tour was actually pretty interesting. As we left the harbor we had the opportunity to pass Paradise Island and in doing so we got to see all of the houses of the rich and famous. My memory escapes me now, but I do recall seeing Charlie Chaplin's, Oprah's, Nicolas Cage's, Michael Jordan's, and Tiger Wood's mansions on the shore. There were many others but I have slept since. The island is small and marked by two prominent features. The first is Atlantis. The resort simply towers over everything else and is noted for a bridge which connects the two towers. The bridge is actually an 8 bedroom suite for the rich and famous. The other distinctive feature of the island is its golf course which take up much of the inland property. In all actuality I appreciated the tour of Paradise island a bit more than our little excursion to the reef. We did see a sunken ship and a slew of parrot fish and yellow tail but it wasn't nearly as exciting as I had hoped. Regardless, it was nice to get out as a family and have some fun.

Once we arrived back at port it was time for the kiddos to have a nap. I put Graham and Ainsley down and then Sydney and I went on a little adventure. After that she would do the same with her mother. Later that afternoon we would spend our time swimming on board and having a nice and relaxing time. That night we would eat dinner at onboard at the Animator's Palate. This is one of those restaurants that is hard to believe without seeing. At first, it seems ordinary enough. The most distinctive features is that everything, from floor to ceiling is black and white. Even the Cast Members (wait staff) were dressed from head to toe in black and white. In fact, in the beginning it is only the patrons, us flamboyant vacationers, that have any color whatsoever. As the evening goes on, however, the color begins to appear. At first you see it in the lights on the ceilings. Then the pictures on the wall magically transform from black and white to true color until, at about the time of dessert, the room makes its complete transformation. From floor to ceiling the room is flooded in color. Even the wait staffs clothes have changed from black and white to Technicolor. The kids eyes lit in amazement. Once again, the food was okay. The show was incredible.

After dinner we made our way back up to the room for a quick change into our suits. We then headed up to deck nine for another evening swim. We spend a little over an hour having an after dinner cocktail and watching the kids swim around Mickey Mouse's head. It was the perfect cap to a complete day. When we arrived back to our room it was with the same astonishment as the day before. Our stateroom attendant had gone out of his way to impress and personalize our stay. This night we found an Origami elephant on our bed and chocolates for the kids who needed the sugar about as bad as Lynley thinks we need another kiddo.

At this point in our vacation I had forgotten. My purpose was enjoying my family and all of the stress and worry had left my mind. I wasn't thinking about my golf tournament, cancer, or work. I was oblivious and it was a surprise change. I don't remember not feeling the pressures of life before. It was wonderful. It was purpose.

5:31 AM 9/28/2007

The next morning the Dungan five would wake up to thunder and one of the most beautiful rainbows I have every seen in my life. Rainbows over the ocean are quite a site and sometimes, if you are at just the right angle, you can see the entire rainbow in all of its glory. While, yes, this is quite beautiful it also leads to a slew of questions for those between the ages of 2 and 6. Most notably, I was having difficulty explaining away the pot of gold at the end of the rainbow. We could see both sides of the darn thing and it was clear that there was no pot of gold at the end of the rainbow and there was certainly no leprechauns guarding it. I don't think leprechauns can float and we did not see any Irish looking boats on the horizon either. The kids loved the rainbow but it was clear that Sydney was disappointed by the lack of gold. She was clearly hoping to score big so that she could buy out the Disney store downstairs. Even though the excitement over the pot of gold was drained right out of her I had a wonderful time watching the rainbow and the rain clouds move in and out as Sydney sat out my lap out on the veranda. We snuggled. It was completely peaceful. I loved it.

Later that morning and after a thorough scrubbing of our stinky rugrats we made our way down to Triton's for a gourmet breakfast. We watched out the window as the ship tried to make port at Castaway Cay but it was clear that the weather had other plans. The tides had shifted and we missed our first attempt. We would spend the next hour repositioning ourselves for another attempt. In the meantime we ordered breakfast and talked as we waited for our steaming hot sustenance to arrive. As soon as the food arrived, piping hot I might add, like clockwork the terminal poopinator uttered those words that guaranteed another cold meal for Daddy. "Daddy, I have to go potty!" One of the great things about eating at home is that Graham doesn't seem to do this and, if he does, the restroom is right around the corner. In a restaurant, however, if the boy needs to go to the restroom he requires an escort. That means me. For some reason, no matter what restaurant we are eating at the boy has programmed himself to have an intense desire to poo the moment my dinner arrives. Ironically it does not happen when his food arrives. There are many times his food is served before Lynley and I are served. But, it might as well be written in stone, the moment my food arrives the boy has to go and if he doesn't, in his words, he will die.

So, what do you do? Well, I will tell you what you do. You grumble. You suck it up. And, you take the boy to the restroom. Graham also somehow knows exactly how long it takes for by meal to get cold. If it is something that can't be ruined by sitting out for five or ten minutes then he is as quick as can be. However, if I am having something that can really be ruined by sitting out, like French fries or eggs, you can bet that I am in for about fifteen minutes of standing outside his stall in the bathroom. Sure enough, after much grumblings and "Are you done yets?" and "My dear God, son, how much pooh can you haves?" we finally made our way back to the table where everyone had finished, the boat was docked, and my ham and cheese omelet had died of a combination of hyperthermia and old age. Thankfully, our dear server, who found great humor in my trials and tribulations, had put in another order for a piping hot omelet. Within minutes I was eating an actual warm meal for the first time since I had arrived. Perhaps this is the reason I had such a bad attitude about the food. I wonder if a filet mignon or pecan encrusted salmon filet are actually supposed to be served warm. hmmm.

Well, crud, here I went writing for an hour and I haven't even gotten through breakfast on day three. I guess there will be more purpose to come next week.

P.S. Don't forget the golf tournament coming up in just over a week. Make sure you sign up today at http://www.GolfForLifeCup.org.

Thankfully purpose does not seem to run on hot meals.