Tuesday, September 4, 2007

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.

Wednesday, August 1, 2007

August 2007 Posts

4:42 AM 8/1/2007

Yesterday I went about my normal business of picking up the kids at school. My first stop was by Ainsley's room. It is always an incredible experience to pick up Ainsley. There is nothing quite like seeing that smile and feeling that first hug as she comes running into my arms. Some people have a morning cup of coffee to get started, some have a cigarette, some have a cocktail in the evening, and some even use drugs. I will take a hug from Ainsley everyday. There is nothing better than that feeling. It is sustaining.

The second stop is the next door down the hall which just happens to be Graham's class. He has long since out grown running into Daddy's arms but that does not mean I was without a huge sense of relief and happiness when I saw him. Let me explain. As I made my way into his room yesterday I saw, Victoria, one of his class mates, dressed to the T's in a princess gown. I then looked to the right and found Beckett, Graham's best friend. He, too, was dressed from head to toe in a pink princess gown. He had a frilly lace shoal, a diamond and silver tiara, long white silken gloves, and he was shoed in a lovely ruby encrusted 2" pink pump. The look caught me quite by surprise. I chuckled to myself and blurted out the first thing that came to my mind. "Why, Beckett you sure are beautiful today." He was flushed and said thank you. All of a sudden uneasiness washed over me. My mind put two and two together. What could my son possibly be wearing? Would he, too, be wearing a princess gown? In my heart I just knew. I just knew he was going to be wearing a frilly dress - my son! Where was he?

My eyes scanned the room and then did a double take in the far back left corner. There he was. We was gruff. He had on black cowboy gloves with a big manly black cowboy hat. What can I say? I was somewhat shocked but entirely proud. I can't say that this ranks up there with defending his sister's honor in the playground but it certainly brought a smile to my face. Another example of my boy making a good choice. What a sense of relief!

I eventually made my way to my third stop down the hall were I found Sydney full of hugs for all of her friends and raring to go. With her I received a great big hug and some immediate requests for swimming once we got home. Yes, I know my place here as well. I loaded up the gaggle and we made our way home where we worked in our workbooks, we read some of Sydney's junior readers, I tossed the football with Graham, had a snack, and then eventually made it out to the pool with mommy. All in all, it was a perfect day.

A regular day of purpose. How thankful I am!

5:56 AM 8/2/2007

Good morning! Well, yesterday Lynley and I finally committed ourselves to putting Sydney back on cis-retinoic acid (Accutane). There was really no clear direction here and I decided that it was time to stop putting it off. It might have been easier had someone with an actual medical degree suggested this treatment plan but I had some doubts since it was my own idea. I was honestly shocked (or bothered) by the lack of dissent as I passed my idea around the pediatric oncology community. I has really expecting (or hoping) that someone would tell me it was unnecessary or not a particularly good idea. I wanted them to tell me to just leave her alone and let her go on with life. I wanted to be scolded for continuing therapy. I guess I wanted all of this so I would have confidence that her situation was not as dire as I potentially know it could be. In a way I was looking for hope. Had the oncologists balked at this idea it would have been clearer that she had a potentially good prognosis - at least equal to those coming straight out of standard therapy. Alas, that was not what I received and I guess I knew that all along. The problem I think is that I know too much about much of this and I simply hate applying it to my daughter. In this way and given her history, I know logically that her chances at survival are low. For obvious reasons, that is very hard to accept emotionally.

The good news is that we have a plan. I have a series of steps clearly laid out in my mind and I know them to be solid. Furthermore, I know that they are the best course of action for her - carefully balancing quality of life with continuous low dose therapy. Hopefully, we can maintain this type of therapy for as long as possible and maybe even reach that point when we can say that we actually have a cure. In the meantime we will do everything we can to maintain her current disease state (NONE).

Now, Accutane, were do I begin? Well, this is her third shot at 6 courses of Accutane. She will we be taking 60mg twice per day. That is 3 pills in the morning and 3 pills in the evening and we will do that for 14 days straight and then we will rest for 42 days. From our past experience we have a pretty could idea of what to expect. Her skin will turn red and begin to peel in earnest. We will do our best to manage those side effects with vitamin E oil and aquafor which seem to work well for her. If you happen to see her over the next two weeks you can expect to see one greased up little girl. We will also work hard to protect her from the sun whose effects are only multiplied when she is exposed to this much cis-retinoic acid. The other fun things that we can expect are phantom pains - both abdominal and in the legs. So, be prepared for me to go mental. On that note, we should also prepare for her to go mental. Irritability is one of the other side effects I clearly remember. Finally, we will also watch for some things in her blood work. We are looking for things like hypercalcemia which would mean that we would have to back down the dose.

I am also going to try to schedule some pharmakinetic studies for Sydney. There is not nearly enough time to get into this right now and I will address it in one of the days to come but it will hopefully give us a clear indication that she is at least receiving enough of the drug to be effective.

Well I had best be off. The fun has begun.

My purpose is still churning.

5:47 AM 8/3/2007

Yesterday was not a good day for Sydney. In fact, it was awful and quite possibly worse than awful. Now, the first thing I don't want to do is scare other parents from using Accutane. We have used it before for 12 courses and rarely experienced problems outside of the common side effects. In fact, it is quite possible that the issues Sydney had yesterday were a direct result of our own negligence. I tell you this story because I don't want anyone to make the same potential mistake that we did. I will start out by telling you what happened and then we can go through the process of identifying the cause.

Sydney started her first 60mg dose on Wednesday night. Then, yesterday morning she received another 60 mg dose. This was the correct dosing for someone her size and stature. At lunch time yesterday afternoon at school, Sydney doubled over in pain. It was not long before she was throwing up all over the place. Lynley and I raced to the school to pick her up where we found her continuing to throw up. Sydney would throw up about every 10 to 15 minutes for the next 5 hours. She also experienced sporadic severe abdominal pain. As anticipated (I will explain later) she then recovered to eat a complete dinner, watch movies, and play with her brother and sister. She has slept comfortably overnight.

So, what happened? Well, Lynley and I think it is a pretty clear indication of a Vitamin A overdose (hypervitaminoses A). Keep in mind that Accutane is basically a fancy version of Vitamin A. After racking our brains to discover what might have caused this somewhat violent reaction we remembered that Sydney had taken a vitamin earlier that morning. Now, we know that we are supposed to stop her from taking any supplements during this therapy and the reason is because of exactly what happened. Lynley and I knew better and we should have been paying closer attention. We knew not to let her take a vitamin. Regardless, the cure for a Vitamin A overdose is to stop taking Vitamin A and just wait until it clears the system. Accutane clears the plasma in about 16 to 20 hours so we just had to wait it out. Thankfully at about 4 pm she started making some earnest improvement and by 5 she had her last episode.

Lynley and I are both kicking ourselves but we are also not really excited about the idea of continuing Accutane. It is something that we will have to think through. We want to continue to treat Sydney with low toxicity therapies but as you can see, even some of the most benign can raise their ugly head when you don't watch carefully enough. Truth be known, there are some other potential side effects of this treatment that could have caused Sydney's episode and it would take a blood test to get to the bottom of it. Hypercalcemia can also cause a similar reaction however I don't know how realistic that diagnosis is given the amount of time that she was exposed to Accutane. Since I did not have my handy serum calcium kit or pocket daddy lab we did not run this test and were not excited about the possibility of running her to the hospital and subjecting her to a bunch of pokes. We know she would need to have some labs before restarting the therapy so why poke her twice. Sure, we would have known it was hypervitaminoses A or hypercalcemia but either would have been due to the fact that she had both vitamin A and Accutane.

The great news in all of this is that Sydney is fine and dandy and there should not be any permanent effects but, ultimately, this was caused because we were not paying close enough attention. Even though we recalculated all of her doses and we were taking all of the precautionary steps we simply missed it. This is not a vote against Accutane. This is just an example of being extremely careful and it shows the power of Vitamins and why you should never mix cancer therapy with supplements unless you have first discussed it with your child's oncologist.

Well, I am off. I have to fly to Chicago for a CNCF board meeting this morning. Have a great weekend.

Purpose requires vigilance.

5:05 AM 8/6/2007

I am back to home sweet home. It was an incredibly busy and tiring weekend but it was also one of the most productive meeting that I think we have had in history. There were so any great things to come out of this meeting and I can't wait to see them all begin to move forward. This meeting included our board, obviously, but it also included some representatives from our medical advisory board. This was fairly unique for one of our board meetings but it was incredibly interesting to receive the feedback and input from these neuroblastoma researchers. Both parties received insight into the various priorities and goals of the other and we discovered how we could best make these sometimes differing goals work together. It was incredibly interesting and productive.

For me, it was also interesting from the perspective of the fact that Sydney just had such a strange reaction to Accutane and Dr. Patrick Reynolds just happened to be at our meeting. Why is that important? Well, if Dr. Reynold's isn't the father of Accutane's use in neuroblastoma he is certainly amongst the royal family. To his day he is considered to be the authority on retinoids (like Accutane) and their use in kids with neuroblastoma. This was quite lucky for me. Here, I just had a problem with Accutane and I had access to one of the world's leading experts. How often does that happen?

So, what did he tell me? Well, he thinks I am nuts. He does not think that Sydney could have received enough Vitamin A with that sequence of events to develop hypervitaminosis A or hypercalcemia even though the symptoms were spot on. He finds it very hard to believe that she would have achieve plasma concentrations much above 3 micro molar and that is not a whole lot considering the round is structured at 14 days of therapy to try and achieve plasma levels between 5 and 10 micro molar. He also thinks that had she had one of the conditions I mentioned before that we would have seen some other things as well. He also thinks that it is quite possible, however, that Sydney could have developed an allergy to Accutane and that is probably the more likely of all of the scenarios.

But, come on! What does he know? Who are you going to believe - me or some world expert? Yeah, yeah he is probably right just because he has studied this for a living and he is, after all, the authority on the subject but that still doesn't get me much closer to an answer. The fact remains that the possible causes that I have suggested are quite reasonable. The symptoms fit the diagnosis perfectly and you should never give a vitamin during the same period that you are administering Accutane. Those are known commodities. It is just unlikely that you would see this effect this that early on. As a side note, he also scolded me for giving Sydney ice cream in the morning. Jokingly he said that was enough to make her sick to her stomach. While that probably isn't the case I don't know that I would not change that up if we restarted Accutane. I was doing it for a twofold reason (a) Sydney needs to take Accutane with fat to help increase the absorption and (b) it has always been a nice reward for her taking her pills.

So, where does that leave us? As you can imagine Lynley is not real excited about restarting Accutane. I am not necessarily either but I would be interested in getting to the bottom of what happened. I think the medical community is somewhat ambivalent as to what we do right now. While they all clearly understand the arguments of why it "might" provide some value I don't think anyone is really willing to do it if it is creating such toxicities in Sydney. That was never our goal. I think it might be worthwhile to try a couple of days at a reduced dose to see if we might be able to reproduce a much smaller version of the reaction. That would give us a clearer picture of what is going on and perhaps identify a cause of the toxicity. If she experienced symptoms we would know not to give it to her again. However, if she does not respond the same way we could ratchet up the dose and see if it was related to something else. It would certainly give us some more information. Regardless, I am going to run it by her oncologists here and see what they want to do. Well, there you have it - murkiness and no definitive answers.

Had I forgotten what purpose was about already?

5:09 AM 8/7/2007

Good morning! Well, we are back to some level of normalcy. Yesterday all of the kiddos were back at school and Lynley and I were back into the grind. It was a busy first day of the week professionally but we also have a bundle of things to do for the kiddos. The first is for Sydney. Along side all of the normal end of summer beginning of school activities we have a few new challenges. The first is a doozy.

Last week we were watching Cleo. Cleo is 4 year old black standard poodle. She is the neurotic canine progeny of the Robertson's. As a cool way to express Sydney's love towards Truman Lynley and she decided it would be a good idea to keep Cleo while their family went on vacation to Walt Disney World. Cleo was set to stay with us for about a week. The good news was that Cleo and Hogan (our golden retriever) were great friends and really enjoyed each others company. In fact they spent the entire week attached to each other by the ear. Seriously, one of them was always biting the others ear or hanging on as the other galloped around the yard. Like Truman and Sydney is was a strange love if I ever did see one. Regardless, we were stuck with the dog, I had nothing to do with it, and yet I was somehow left in charge - typical dad stuff.

We were warned that Cleo was a pretty good dog but that we should be careful to leave underwear and socks from laying around. Apparently they are yet to break of the habit of indulging herself in this fine delicacy. That was just fine with me. I expected no more of a Robertson. We made an effort to ensure that her environment was free of any type of undergarments. Other than this, life went on pretty much as normal. The kids loved having Cleo around and Hogan was enthralled by the companionship. Other than the fact that I never saw her sit down in the entire time she stayed with us she was a perfect little minion. Until....

Apparently Cleo did not only have a taste for undergarments and one afternoon we got an unfortunate surprise like no other. The kids and I were in the pool. While getting ready Sydney took out her hearing aids and set them out on top of the table for safe keeping. This was standard stuff. She always took good care of her hearing aids when it came to swimming. Nothing was particularly different about this afternoon. We enjoyed swimming and splashing around. As Lynley and I made our way back up onto the porch Lynley noticed something on the ground. One of Sydney's hearing aids had been totally demolished. As we scoured the surfaces for the other we noticed a very sheepish Cleo who was lying next to another nearly demolished but thoroughly destroyed hearing aid - complete with teeth marks. We never really identified how she got up onto the center of the table to get them off but what we were sure of was that they were completely gone. A rather large purchase straight down the toilet.

In the days to come we came to terms with Cleo's mistake. After all, it was our responsibility to watch her and she was under our care when she committed this egregious act. Life went on. Sydney, however, was more distraught. In fact, to this day you can find all of the little destroyed parts to Sydney's kitty ears in a little baggy which she keeps under her pillow at night. I think she was hoping for the tooth fairies partner in crime "the hearing aid fairy" to make them all better. Heck, I was all for the idea. If a fairy will give you some money for a dead old tooth they must give you a rather large check for a destroyed hearing aid. Needless to say, we are still waiting it out to see what happens.

So, this week, we have another challenge. We have to schedule a couple of appointments to get all of the pieces in place to get Sydney another set of hearing aids. We will need to test her hearing and then go through the process of getting her ears molded and selecting a new version of the infamous kitty ears.

That is purpose for you. It isn't all fun and games and sometimes you just have to keep moving forward.

5:24 AM 8/9/2007

Good Morning! I missed an update yesterday. Well, unfortunately, stuff happens. The good news is that nothing awful happened. I was up late working and then much of my slumber was disturbed. It seems that the girls have come down with something.

Ainsley has a common cold. There is lots of drainage from her nose and she has been tugging at her left ear occasionally. She has also been sleeping a ton and somewhat excitable when things do not go her way. That is fairly atypical for Ainsley who is the princess of letting things roll off of her shoulders. This is just the common cold and nothing serious but worth taking her to the doctor to ensure that she does not have an ear infection.

Sydney is the funny one and the real reason for my lack of sleep both last night and the night before. She has two symptoms and as much as I love her and obviously concern myself with her medical care she is milking this for everything it is worth. The night before last she woke us up four or five times and last night was nearly the same. I can certainly understand her need to be comforted by us but I honestly have to say that being woken up for the fourth time because her nose is stuffy seems a little overly dramatic. The problem is that she is not only waking Lynley and I. Her flair for the dramatic leads to much clanking and chaos which is always enough to wake the household.

This morning I woke to her literally screaming "Mama!" at the top of her lungs from her bed. I rushed in to find her dabbing her eyes with a Kleenex. She complained that her eyes were stuck shut. This brings us full circle to the problem at hand. Sydney has some sort of eye infection and what seems to be a common cold. That is it. I don't want to sound non sympathetic but I am having difficulty mustering the degree of concern that she probably sees as being justified. She has been to the brink of death. She has endured a stem cell transplant, surgery, months of chemotherapy, and years of painful antibody treatments without much more than a word. And yet, listening to her, this stuffy nose and eye infection is quaking her to the core. It would be funny if it were not so tiring.

Regardless, yesterday we made a dash to the doctor to get everything checked out. Both received antibiotics - one for Sydney's eyes and one for Ainsley's snots. Between the two of them they have the common cold coupled with an eye infection and the possibility of a burgeoning ear infection. We have tried to convince both of them that they will probably survive but I just don't know that we are getting through.

It is a case of dramatic purpii-tis.

6:23 AM 8/10/2007

We Dungan's are playing hooky today. It seems that with all of my traveling as of late that Lynley, rightly, laid down the law. I have been grounded to spend a day with the kiddos at the water park. That is a pretty nice punishment if you ask me. However, I am not even allowed to touch a keyboard. Even sitting here writing this entry in my diary is dangerous. Considering the fact that I have three rugrats cuddled up next to me on the couch, it is probably a good idea that I stop skirting the law and give up the keyboard for a kid day in earnest. Have a great weekend.

I have purpii to the max.

5:53 AM 8/13/2007

Friday was a dark day in the Dungan household. Graham went to school and played with Beckett. During recess he played soccer with a group in his class. Unfortunately Graham missed the soccer ball and with that the winning goal and he got beat up. Later that afternoon a tornado hit his school and sucked him up. Lynley fell off the diving board, bonked her head, and had to go to the hospital. Finally, Sydney was run over by a boat.

At dinner time it is a Dungan tradition that we tell everyone about our day. On Friday evening, when asked, the preceding paragraph is what Graham had to say about his day. Now, the irony in all of this is that this came just mere hours after we got back from NRH20, a local water park. You should know, we spent the better part of the day at the water park. We floated around the lazy river, rocked in the wave pool, splashed in the tadpole children's area, and spent hours riding the many slides in Frogstein's Splashatory. In short, we did everything a munchkin could do at NRH20.

What Graham did not do is go to school, play soccer, or with Beckett. Additionally, I am quite sure that there were no tornadoes in the area as it was a beautiful day. Furthermore, I happen to know that Sydney was no where near any boats and Lynley did not jump off of a diving board. In short, it was nothing less than a perfect vacation day.

Now, where Graham got these ideas into his head I have know idea. My jaw dropped to the ground as we all sat around the table listening to Graham tell us about his day. Lynley and I struggled to keep a straight face as he described his various adventures. I will tell you for sure that it officially brings everything in to doubt that he has ever told us about his time at school. I guess the little Dudester has finally hit that age where he is experimenting with his imagination. He is using creative stories (lies) to try and make everyone around him laugh. He is having great fun. You just can't trust him nearly as far as you can throw him.

The good news about all of this nonsense is that we had a spectacular vacation weekend despite Graham's interpretation of the events. We spent the following day at the Fossil Rim Wildlife Park and then spent yesterday around the house relaxing and swimming in the pool. All in all, it was a tremendous time both for us and the rugrats.

My purpii continue to surprise me.

5:37 AM 8/14/2007

Good morning! Well the transition back from vacation mode to work mode is virtually complete. The only unplanned addition to our raucous weekend was an ear infection which Sydney's ear finally succumbed to. Thankfully, this one has been associated with little to no pain. In fact, the only reason that we realized that she had a problem was because of drainage that was coming from her ear.

We spent last night at the roller skating rink of all places. Southwest Christian School had a back to school party for its kindergarteners, first, and second graders. Most of Sydney's friends were their with the exception of only one or two. The important part was that Nathan, her pride and joy, was there to be admired. Roller skating was a new experience for Sydney and Graham. It was not long before I had them suited up and ready to go.

I probably should mention that I too geared up for the event - talk about a flashback to the 70s. Regardless, as head nimrod in charge I was given the tasks of remembering how to skate while both not embarrassing myself too badly and not endangering the lives of my children. Surprisingly we all made it out to the floor without killing ourselves. Graham took the first fall but that was nearly the last of the night. Sydney, however, would take many tunbles but I honestly think that her problems were more mental than anything.

Had I not been Sydney's father I would have thought the next story to be pretty cute. Since I am, I still have to think of ways to torture the young man. None the less, here you go. As I mentioned a bit earlier Nathan was at the party. One thing that you just have to love about Nathan is that he gives every impression of being a truly kindhearted soul. Anytime I have ever seen him around my daughter he has been nothing but a gentlemen. In fact, I would have to say that he has the manners of a much older twerp. He has treated my daughter with nothing but the utmost of caring and respect. This night was no different. It was not even a minute that we were on the floor that he approached us. Nathan was on his own inline skates and although he was quite a ways from mastery he had definitely acquired the important skill of staying on his own two feet. Sydney was still doing the 2 foot shuffle, inching forward with every small step. It was not long before she fell. Nathan was the first to offer a hand. She took it with pleasure and he carefully got her back into the upright position again. They would make a complete circle around the rink, hand in hand. It would have been completely and utterly adorable had it not been my daughter.

During their jaunt into lasciviousness I helped Graham make his way around the floor. He would occasionally fall but he was committed to doing it himself (ah, the mind of a 3 year old). Every time that he fell he would bounce right back up and within seconds he was skating again. It was not long before Graham had earned his wheels. Although he is not quite doing tricks he can make it around the rink quite safely.

As the evening wore on Nathan and Sydney would eventually split and Sydney would see many friends. She continued to take tumbles and it was not too long before she was convinced to give up skating for good. Not unlike I suspect most six year olds are she refused to take instruction from her daddy and found some satisfaction in simply hating skating. This is a fairly typical reaction for Sydney. If she can't do it perfectly the first time then she never wants to do it again. She is an incredibly undedicated quitter which just drives me bonkers. This is one of my greatest frustrations as a parent. Especially considering the fact that I believe that you must fail to succeed. Sydney, however, just quits and is quite content to never do that activity again regardless of the fact that she never gave it an earnest try. I have to figure out how to overcome this. I need to figure out a way to teach her without her knowing it. She needs some significant success after some significant failures to prove to her that she can do anything that she puts her mind to. I don't care if she fails as long as she tries. I just don't want to see her quit. I don't even care if she doesn't like skating. That is fine. Just get good enough at it that you can make an informed decision. I have a feeling that I need to take her back to the skating rink everyday for a week to teach her how to skate. This might just be a perfect opportunity for her to see success first hand. Heck, she might even like it. I think I will probably even video tape it so that she will remember how hard it was before she conquered it in the end.

I can't believe that after all she has been through she could possibly have this outlook on life. She has faced much larger demons than this. I just have to convince her of it.

That's my purpose.

6:15 AM 8/15/2007

Good morning! Well, yesterday was a perfectly ordinary and average day. Sydney was quite happy as she was the only one in her class at school and received one on one attention all day long. She really thought this was the way that it should be all the time. Graham and Ainsley both had ordinary and average days at school as well. However, for some reason when they all got home they decided to explode into badness. I have never seen anything quite like it. It is as if I had step into a nasty chapter of the lord of the flies. There was pushing and shoving. There was name calling. There were 'he did its' and 'she did its'. Of course this was all followed with tears and screaming. It is if the great switch of stupidity had been magically flipped on. It did not take long before the were all in time out and separated to play quietly by themselves. This would have been awesome had it worked but this was only followed by 'Daddy I need's and 'Daddy I want's and then jealousy as they fought for my attention and help. I picked up the kids at 3:00 pm and at about 4:00 pm was ready to take them back or to trade them in on friendlier models.

I know I am supposed to have some great story about how the family with a cancer kid is supposed to find some great meaning behind the most mundane of things but sometimes it just isn't there. Yesterday was just such a day. It was ordinary and then followed by a twerpisode of badly behaving snots. I can't find much meaning in that but I can tell you that as mundane and annoying as it was it was so much better than the alternative. I achieved normalcy and badness and there is something to be said for that.

Today I am simply thankful for having purpii - for better or worse.

6:07 AM 8/16/2007

Good Morning! The kiddos have all been seemingly happy at school. Sydney and Ainsley are both improving nicely on antibiotics. Graham still seems to have skirted this particular round of the snot bug. All in all, things continue to go pretty well. We still have not decided as to whether or not we will reintroduce Sydney to Accutane. Since her dramatic reaction we have been reluctant to even fathom the thought of putting her back on it. On the other hand, I have continued to talk to several oncologists. They all seem to be riding the fence. They understand the potential for benefit but certainly don't think it provides any guarantees at this point. The toxicities that she experienced leave them all fairly non committal. Universally, however, they all seem to be interested in reintroducing it in a lower dose to see if the problem recurs. They all seem to be interested in what would happen. The fact is that the reaction she had is rarely seen and they all want to point it to something else - like me giving Sydney ice cream in the morning with her pills or some other situational oddity. Most think she will not respond the same way and think that she will, in fact, probably eventually tolerate the full dosage. I, too, am interested in trying to dose her again but Lynley is pretty against the idea. I guess my issue is that I want to understand what happened and why. My curiosity is peaked and frankly I still see the potential benefit. Lynley and I will eventually come to a decision. We just need to discuss it.

I also wanted to point out an article that was left in the guestbook. I meant to talk about it today but time has slipped by. I am very thankful to Wendy for posting it. It is entitled "The Power (and Peril) of Praising Your Kids" and it can be found here:

http://nymag.com/news/features/27840/

It is a good read. I think it touches on one of the reasons that Sydney gives up on things that she can not do perfectly the first time. Perhaps my praise is hollow. Either way, I will be talking about it tomorrow.

Well now I had best be off. There is quite a bit of purpose ahead.

6:23 AM 8/17/2007

Good morning! I am off to a late start. What can I say, I was on the phone into the wee hours last night. I would love to tell you that I still had a great night sleep. I guess I could say that it was super duper but that probably would not be exactly how you may describe waking in the middle of the night to find your cat urinating on the pillow you are sleeping on. If that was how I described a good night I would probably have a few more issues than are already public knowledge. But yes, my daughter's blinkety blank cat peed all over Lynley's pillow last night. I was rewarded with Lynley throwing the cat towards my side of the bed where I could feel warm droplets spraying all over the place - my pillow, my arms, my face - yum. Nothing quite like the feeling of warm cat urine at 2:00 AM. So there you have it - my excuse. It isn't exactly a "the dog ate my homework" type of excuse but I don't think any one would hold it against me.

As a quick note, we took Graham back to the dentist yesterday afternoon. It has been confirmed that his graying tooth, the one that he smashed on the side of the pool, is in fact dying. We are going to wait until it dies completely, which is estimated at about 2 months, and then we will pull it. We discussed getting a cap at that time but we have been told that little boys have a tough time keeping them for longer than a week. So, to make a longer story short, we will have another toothless wonder running around the house. Graham will finally get his dream of being big. You see, Graham has always believed that the point at which you become "big" is when you lose a tooth like his sister. For him, it is a right of passage - a milestone if you will. Much like being confirmed at the church, getting your drivers license, achieving the right to vote, earning the right to drink alcohol and becoming old enough that your car insurance rates drop; loosing your tooth is a significant sign that you are indeed big.

Well, I know that I said I would discuss that great article but I am just not going to get to it today. The fact remains that I am tired and quite frankly I smell. I think you may already understand why.

So, with that, I am off to a strange start to a day of purpose.

5:29 AM 9/20/2007

Good Morning! This morning will be another quick update. Scan week sneaked up on us and believe it or not it all begins again this morning. Today Sydney will arrive early at the hospital to begin drinking contrast for a CT scan. This will be followed closely by a bone scan. This is just the start of a very busy week for Sydney. Ironically, this is also the week that she will start back to school at Southwest Christian.

It will be good to get another set of scans behind us. This is our quarterly opportunity to find reason to breath a bit easier - to live a few weeks in the splendor of remission before we start badgering our brains with worries of every little ache and pain. Of course this week is always a bit scary. To this day and what must be our 20th series of scan week, I know it will still be a nail-biting time. Although I have no real reason to be any more suspicious of disease than normal, it is fear on the unknown still beats inside me.

I don't know of anything in our lives that is quite like this. Every 3 months our lives completely hinge on what the scans read. It is all or nothing. Either we can go on living our lives comfortably for a few more months or the monster is back and likely here to take our daughter. There is no middle ground. It is either here or it isn't. During this week it almost feels like Sydney's life depends on the flip of a coin. Everything boils down to this - complete happiness or complete and utter despair. Life or death, that is what this week comes down to for us.

So, no I really don't expect to see anything ominous on these scans. I have no reason to. Sydney seems somewhat healthy and she is certainly happy. However, I know better than to go into this with any level of confidence. I know that it can be there without us even knowing it. Today we will hope and pray for the best and just go into this the same way that we have faced all of our other scans - one foot in front of the other.

It will be good to get through this week. My heart is waiting to beat again.

Purpose sustain me.

5:06 AM 8/21/2007

Our first day of scans went without a hitch. Yesterday Sydney successfully completed her CT and bone scan. We still do not have any results. I can tell you that I did not see any disease on the bone scan which is good news but just one small piece of this puzzle (keep in mind, I am not a radiologist, but rather, completely incompetent when it comes to reading scans). The CT scan went smoothly with no repositioning or review. Everyone was smiling as we left the room and no one screamed "Oh my God!", busted into tears, or dialed 9-1-1. If that means anything you might hope that the CT was relatively clear. This morning she will be having her bone marrow biopsy and aspiration. Actually, it will be at noon but, unfortunately, we will be beginning the process in the clinic at 7:30 this morning. It will be a long morning for Sydney without food or drink.

Today I wanted to tell you about a golf tournament that we have created to fund neuroblastoma research. It is called the Golf for Life Cup and it will be held at Mira Vista Golf Club in Fort Worth, Texas on October 8th, 2007. Event details can be found on the website at http://www.GolfforLifeCup.org. Through this event we will raise $100,000.00 for neuroblastoma initiatives. Funds raised from this event will go to support some incredibly important new clinical trials that would probably not be available to kids with neuroblastoma anytime in the near future unless we had stepped up to the plate. These are undoubtedly two of the most important research initiatives I have ever been apart of. Now, I have to put my money were my mouth is and make sure we meet our goals so that we can move these projects forward.

Raising $100,000.00 through a golf event in its inaugural year is no easy feat. It takes an incredible golf course and it will take and incredible amount of effort to make this event like no other. We have done an excellent job with the planning. It will be fun and we have brought in some incredible prizes and surprises. I have every intention of making this tournament like no other most have ever participated in. I hope that everyone will want to have their name associated with this event and everyone will want to play. So far, it is looking great! Golfers and sponsors are coming on board but we need more to make this as successful as it can possibly be for our kids.

Now, I am looking for some help and I am looking for three kinds of it. First, I am looking for families with children who have neuroblastoma to be a part of this event. This isn't Sydney's golf tournament. This is for all of us and all of our kids. The more the merrier and the more people that we can show are affected by this disease the better. Second, I am looking for sponsors of the event. We have sponsorships available from $250.00 to $25,000.00 and there is hopefully something in every business' budget. While our sponsorships come with many different levels of participation we have made an effort to ensure that each one receives significant recognition for their support. Not only will there be print, web, and radio advertising for the event and our sponsors but I will make every effort to ensure that that everyone knows who sponsored this golf tournament and supported our children. We will make a commitment that their support of us will not only be evident at our golf tournament but on our websites and places of prominence year round. I want them to know how thankful we are for their support and what incredible companies they are for standing behind our kids. I intend to ensure that every company that walks out of their experience with the Golf for Life Cup feels that they were the best dollars ever spent on philanthropy and I will make every attempt to reward their support with as much goodwill as we can muster. From an advertising standpoint, an investment in this effort are dollars well spent however, the charity derived from it will be priceless.

Finally, I need help with the golf tournament. Many of the details have been worked out but there is lots of leg work to be done. I could use the most help with finding sponsors but if you are uncomfortable with that I need volunteers for the day of the tournament and I have all kinds of discreet projects that need to be completed between now and then. I need help getting golfers. I need help finding auction items. I need help writing letters. In short, I need help making this the greatest golf tournament ever. I want this experience to be memorable and rewarding for everyone because only then can this make the impact necessary to truly help research. In this one day, we could literally move up research 5 years. I am not kidding. Please consider being a part of this tournament. No matter what your level of participation I sincerely appreciate it.

Most of the materials have been printed and I would be glad to get them to you but I have included some of the PDF versions below. Please let me know if you need any of the print versions.

Sponsorship Letter

List of Sponsorships

Brochure

Additionally, everything can be found on the website at http://www.GolfForLifeCup.org. If you have any questions or comments please feel free to contact by phone at 817-846-6085 or email at mdungan@lunchforlife.org. I would really appreciate your support.

Golf and purpose! I knew I could find a way to combine them.

5:58 AM 8/22/2007

Good morning! Well we have now made it through the brunt of our scan week. I am happy to announce that both the CT and bone scan came back clear of disease. That is a relief and a sign that we are not dealing with a smorgasbord of disease but it has always been the bone marrow aspiration and biopsy and MIBG that I have really hung my hat on. Yesterday's bone marrow aspiration and biopsy went pretty well although we did have a few hiccups. The biggest was thankfully not life threatening but had all of the potential to be something serious.

I am always amazed when we go to visit a doctor or the hospital. The paperwork we fill out is unending. In this last week I have signed no less than 20 sheets of paper and I bet I have filled out at least 10 pages of forms. It seems everyone wants to know about Sydney's full name, her insurance, her date of birth, her parents, her allergies, etc. I could really do without the paperwork but I do it because I believe there must be some rhyme or reason to it. Someone must be paying attention to all of this. I fill the same information out over and over in radiology. In the end it turns out to be a triplicate of information so I am quite sure that everyone (or atleast 3 different people) must be checking their Ps and Qs. Either that or it is an interesting test of my sanity. Regardless, we fill them out because it is something to do while we wait and, after all, they must be important.

I do know that they are eventually used. We fill out the forms and then they eventually come and grill us regarding the answers. Yes, they ask us the same questions. What is Sydney's birthday? What is her full name? What are her allergies? I am not sure of the purpose of this inquisition but I am sure there is one. I guess they have to verify that they do indeed have the right patient and they have to ensure that they mark all of the allergies down in big bold letters. Like I said, by the end of all of this preparatory stuff we have writers cramp, we are mentally drained from the grilling, and both Sydney and her chart are covered in sticky tabs, bracelets, and bold ink. I guess that with all of this checking and double checking they hope to eventually do the right procedure on the right kid with the right drugs.

This is where it all comes down to Sydney. After all of this she was given Morphine yesterday. While that is fine and dandy for someone who is not allergic to it, it is pretty frustrating for those of us that have a child with an allergy to it, been asked about it on a multitude of occasions, and even discussed with the nurses, doctors and staff on several different occasions that very day. Furthermore, Sydney had no less than two bracelets which identified these allergies boldly. Thankfully, Sydney's allergy to morphine is more of an adverse reaction and we generally don't see the nasty effects after the first dose. She usually does not start screaming at the top of her lungs and hallucinating about giant spiders coming out of the ceiling until she has had a few doses back to back. So, in that sense it was very good. I think the next time I may write "NO MORPHINE" in red glitter ink across her fore head and her buttocks just to ensure that we don't run into this little snafu again. I figure I might need to alert someone no matter what end is up.

In the end, Sydney is just dandy. She is a little more sore than she has been in the past but she has taken in it stride. As is usual, we finished our trip to outpatient surgery with a large bowl of chicken noodle soup, Doritos, and mountains of snacking. She then played the rest of the day away. It truly is hard to believe that she just had two holes cork-screwed into the back of her hips just hours earlier. We also kept her IV in overnight in the hopes that we may save her from another poke today. We will see if it holds.

Another day of purpose down. We were lucky. We know it could have always been much worse.

5:16 AM 8/23/2007

Yesterday I was blessed with a little helper. Sydney hung around with me as I went through my usual morning routine. As I wrote emails, talked on the phone, worked on the website, researched antibody binding and ELISAs, she did the same out in the playroom. She even built an office for herself, complete with a filing cabinet and cubby space. At about noon we made our way back to the hospital for her injection of MIBG. I am ecstatic to say that Sydney's peripheral IV survived the night and they did not have to tap her again. IVs have quickly become our least favorite part of scan week. Without proper planning she can be subjected to as many as 4 different IVs and that does not even include all of the missed attempts. There is no doubt, she is nearly impossible to hit. For this reason we are pretty protective of her schedule and elect to keep the IVs in if the schedule permits. This week we did a pretty good job. Sydney only received 2 IVs and one of those was under sedation. All in all, I have to rank this up there as one of her better experiences during scan week.

The hospital was followed with a trip to Sydney's school for a "Meet the Teacher" hour. Sydney's class of last year has been broken up amongst the four classrooms. Although she is no longer with her partners in crime - Nate and Ben - she has been able to keep a few of her old friends. Fred, Evan, and Isabella have transitioned into her new class. With a ratio of 10 boys to 7 girls it ought to be a bit like shooting fish in the barrel for the grimy little daughter stealers. I will have to keep my eyes out and watch closely. I have already done my best to give a dirty look to every little boy in her class. I am thinking of having a gun rack put in the back of the Suburban and maybe even a turret on top.

In all due seriousness I think Sydney will enjoy her class. She has already made a new friend in Keely who is a pretty little girl that sits next to her at her table. Keely followed Sydney around trying to plant kisses on her. Sydney was a bit shy and could not quite figure out what was going on and I was just thankful it wasn't one of those grubby boys. As I watched I also shot a mean look around the room just so all the boys would know that I wasn't approving of all of this kissing. Regardless, I honestly was happy to be there. I was thankful and ecstatic that we were rewarded with the start of another school year. How far we have come.

Today is the official start to Sydney's school year. It also marks the last of her tests. Sydney will have her MIBG scan at 8:00 AM and we will rush her up to Southwest Christian School as soon as she has completed the scan. We are hoping to get her there within about 30 to 45 minutes of the official start of her school.

Ah, oh yes, I guess you would probably like to hear about some results from her bone marrow aspirate and biopsy.

So would we!

Patiently purpifying...

5:36 AM 8/24/2007

Well, we are still waiting on results. I am hopeful that we will not have to go through the weekend continuing to bite our nails. I suppose the good side of all of this waiting is that we did not hear from them immediately. Getting a phone call while still at the hospital is generally not a particularly good sign. I would have to think that no news is good news but it still does not keep the mind from racing. The constant badgering of "what ifs" still continues to race through my head. I am being somewhat patient but it is wearing thin. I don't know how long I can keep the mental demons at bay.

Yesterday was somewhat of a jam packed day. Sydney's MIBG went fairly smoothly but we did have to reshoot her head region. Somehow her head was tilted in the first go through and some of her anatomy was showing up in places that it should not have. I noticed the issue during the first scan and we were hopeful that we might skate by but unfortunately it required a do over. The good news was that the issues did not reappear on the second scan - at least that I could tell. That made me feel a little better but not much. We reviewed the second scan with some significant magnification - more magnification than I had ever seen before. Of course, that level of clarity brought more questions into my mind as I had never seen it with such detail. All of a sudden I was seeing parts of the skull highlighted that I have never seen so clearly before. Thankfully, I did not see the same issues in the normal view but it still left me with questions and concerns. I saw things I am not used to seeing. I don't mean to be an alarmist and I must continue to remind people that I am absolutely incompetent at reading an MIBG scan. Everyone should be thankful that I do not interpret their MIBG scans because I always see disease everywhere.

The remainder of the day was celebrated as Sydney's first day of school. If you can believe it or not, she already has homework. Regardless, she had an excellent first day and she appears to have already gotten the system down. We will see what today brings.

Purposefully waiting.

5:43 AM 8/27/2007

Well, the news is finally in. Late Friday afternoon Dr. Granger called with the news. Sydney's scans were clear. She clearly was not used to giving scan results to the Dungans. She thought she could get by without telling us all of the nitty gritty details. She thought she could simply tell us that the test were "all clear." That simply is not how the Dungan's "roll." We need all of the medical language. We need to know all of the findings. I have to be honest. It was like pulling teeth. It was not that she did not want to give us the information it was just that I don't think she was used to getting into the details. Regardless, after a minute or so on the phone I still did not feel like we had all of the information. In fact, after getting off of the phone I was questioning myself as to whether or not I technically received the results from all of the tests. I guess in this case I guess you could call it a "underwhelming" success. I will probably email her again today to ensure I have all of the facts straight. I don't even know for sure whether or not her marrows were sent to Sloan or to Seeger's lab for immunocytology.

Regardless of all of this second guessing we had a pretty happy and relaxing weekend. It was good to get the stress and pressure off of our chests. Our celebratory evening on Friday night was interrupted with an "explosion" of excitement. While sitting at the dinner table we were rewarded with a not so nice aroma floating around the room. It took awhile to recognize the aroma over the different smells from our dinner but it eventually became so overwhelming that there was no doubt in our minds as to what it was. It was Ainsley. She needed a new diaper. No problem, we are professional parents and used to providing this service even at the most inopportune times. Problem, we were not used to this particular issue. As we lifted her from her chair it became clear that Ainsley had somehow misplaced her diaper. It was no where to be found. However, the contents of what would normally be contained within the diaper were ever so present. In fact, they were in her clothes, smeared on her body, ground into the chair, and plopped onto the floor. It was everywhere. My great nemesis, the arch enemy to SuperDad - human poo and it was all over our dinner table.

The rest of dinner was not normal. In fact, I no longer found myself particularly hungry. Oddly enough, Graham continued to eat and watch TV even with all of the commotion around him. Thankfully it did not take long before we had it all cleaned up. Once the room was re-sanitized it was only seconds before Graham darted from his chair and shot into the bathroom. A minute later he asked for some help. We entered the bathroom to find his clothes scattered on the floor. He was standing. There was poo at his feet...on his clothes...on the area rug...smeared on the toilet seat...and on the tile floor. I really don't need to say anymore do I. I will just leave this with my final though on the subject. It was great to hear that Sydney was clear of disease and the celebration that ensued was not characteristic of what one might expect on such a happy occasion

On Saturday morning we woke to a ruptured water line spewing from our yard. After a trip to Lowe's and some seriously manly digging I had our water back on. At this point I was just thankful that the water was still working the night before.

The rest of the weekend was, thankfully, uneventful.

Purpose and poo - not my favorite combination.

8/28/2007

Who would have thought that it could get worse than poo? I certainly did not, but, here I find myself wishing it were poo.

Yesterday I took Dee Dee along with me to pick up the kids. The first stop was Southwest Christian to pick up Sydney. We quickly parked the car and made our way in to the cafeteria where a group of her classmates were sitting at the tables. Nathan and Sydney were sitting together. You may remember Nathan as the nice young man from the back to school skating party that assisted Sydney around the rink. You may also recall that even though he appeared to like Sydney I decided to let him live because he was such a polite and caring young man.

Regardless, my mother and I stepped into the room and watched them quietly from a distance. They were adorable together. They were both coloring and giggling at one another. They were having a wonderful time. It was sweet and innocent and pure. Even I was not disgusted by this show of playful banter. Even though I am quite manly I might even describe the event that lay before me as cute. And then, all of a sudden Sydney's flirtation was becoming stronger and stronger. She was touching him on his shoulder. It wasn't a caress, was it? No, but it was a little too friendly. I began to make my way across the room. As I did this, my daughter reached over and kissed the boy.

Are you kidding me? What in the H-E double hockey sticks was this. My sweet innocent pure little daughter just reached over and kissed a boy.

Nathan seemed as shocked by it as I. He hopped off his chair and made a beeline for the teacher. Just at this moment Sydney saw me and came running. We all met in the center of the room. Nathan was the first to speak. He directed his comments to the teacher. "Ms. Lewis, Sydney kissed me!" Thankfully she was already preparing to engage me and I don't know that she caught the drift of the conversation. Embarrassed, I told Sydney that it was inappropriate to kiss at school. Nathan seemed somewhat scared. I don't know whether he was more scared of me or of Sydney but I think it was the latter. In a way, I felt sorry for the boy. I felt his pain. As I explained to Lynley later that evening, I could identify with him. There is a lot of pressure being completely irresistible. She didn't find that particularly funny. Regardless, I wanted to let him know that everything was okay and I did not blame him. I was completely taken back but I tried to reassure him. At some point I high-fived the boy. I don't know where that came from. I was just flustered. I wanted him to realize that I knew it was Sydney's digression and not his and somehow I ended up high-fiving the boy for being kissed by my daughter. I would love to hear the discussion at their dinner table last night. Anyway, I handled it as well as I could given the situation and we made our way out to the car.

I was in complete disbelief. My daughter kissed a boy. I did not know whether to laugh or cry. I tried to explain that the behavior was not appropriate but I am pretty sure that my lecture simply came out as "Duhhhhhhhhhhhhhhhhhhhhhhhhh." I was flabbergasted.

Eventually we made our way to pick up the other kiddos. On our way home Ainsley explained that Jacob, a little boy from her class, was running around kissing her. Another twofer - one day poo and one day kisses.

I think I like poo better.

Yep, I like it better when purpose stinks.

5:58 AM 8/29/2007

Yesterday was a quiet day without any twofers whatsoever. It was nice to get through a day without any surprises. Now I can catch back up on some of our discussions with the oncologists while we were speeding through scan week. I did talk at length with Dr. Granger about many items but one of which was Accutane. She felt that it was an extremely odd reaction and not one typical of Accutane. We knew that but it did not necessarily make us feel any better. The doctors seem to indicate that they believe that it was something else and not the Accutane. Heck, if it was not happening before my eyes I would have assumed it was something else myself. Regardless, they are content to follow our lead. I got the feeling that Dr. Granger would like to give it another shot but we were certainly under no pressure to do so. In this sense we are kind of in no man's land and if it wasn't for this strange reaction she would still be on it.

Lynley is still no where near ready to put her back on Accutane. Who could blame her? But then again, that is her job. She protects quality of life. That is why we work so well together. In the end, we decided to revisit the subject in about 6 weeks. We wanted to give Sydney the opportunity to get back into school and get used to the routine before we attempted to make all of her skin peel off again. In the end I think we will probably try it again. We will start gradually to ensure that we are not dealing with some sort of allergy and then we will quickly ramp it up to the full dose. Unfortunately it is believed that Accutane is pretty dose dependent and it takes quite a bit to get to the levels that have shown efficacy. This is not one of those drugs that we want to hold back on for long.

Well, I had best be off. There is a busy day ahead and lots to do.

My purpii await.

6:16 AM 8/30/2007

Good morning! This will be an extremely short update as I have several projects to continue to work through this morning. All appears to be well in the Dungan household. Yesterday Grammy arrived. Graham, absolutely delights in calling her his great grandmother. He just loves calling her that and it sounds quite adorable coming out of his mouth. Sydney took the time to read one of her books to her and Ainsley is still trying to register exactly how she fits into the big picture. She understands the concepts of mother and grandmother and she thought she had that all figured out. I think she was confused with the "great." I told her she was Dee Dee's mommy and she looked at me like I was a complete idiot. Regardless, she is warming up and there is little doubt in my mind that Grammy will be Ainsley's favorite by the time her visit is over.

Later in the evening I had a surprise visit by my brother John who was in town. He too visited with the kids for a bit before he and I went out to dinner later in the evening. It was genuinely nice to see him again. It had been several years since we had seen each other. It was quite the day of family reunions.

Well I had best be off.

There is a mountain of purpose before me this morning.

6:13 AM 8/31/2007

Antibodies sure have been a theme in my life lately. I woke up with no less than 3 email in my inbox this morning asking me the question - what is best? I wish I had an answer and I can only tell you that I am working on it in my secret lab. Go ahead, laugh, but you would be surprised. The problem is that I can't tell anyone which is better because there is no evidence, no direct comparable data. I hope that we conquer that problem by the end of the year but, for now, all we know is that every antibody seems to have some successes and some failures. I think many of these failures are due to several factors but they generally fall into two categories. The first deals with how well the antibody binds to the neuroblastoma cell and the other is how well the antibody kills the cell either by delivering its own payload or recruiting the immune system.

I will come out of the box and say that, first off, I believe that all available antibodies against GD2 (3F8, ch14.18, and hu14.18/IL2) all kill neuroblastoma in kids to some degree. Some do it better than others and some kids are more susceptible than others. I have seen, first hand, children respond to each of the three mentioned antibodies. In other words, I have seen kids with disease take one of these antibodies and then have less or no disease left. I can't tell you that it cured the kids but I can tell you that many had far less disease coming out of therapy than they did going into it. However, they all have problems. In theory there are many reasons that each could be potentially better than its counterpart but at this point there is no real data.

Some of the most basic problems with antibodies seem to be in their delivery and I think everyone around the world is beginning to realize this point. Although each round of antibody therapy may kill neuroblastoma cells it takes quite a few rounds to see an impact on survival. This has been shown by Sloan Kettering. The children that develop a HAMA early on (< 4 rounds) don't have the same survival curve as those that receive more rounds of therapy. They don't fair as well. In fact, many at Sloan would like to see 6 to 8 rounds of antibody therapy before the child develops a HAMA. They have seen this group have a significant increase in relapse free survival than those that HAMA early and have to stop taking the antibody.

In short, one of the major hurdles to overcome with these antibodies is to figure out how much is enough. If you look at this single institution's experience you would have to believe that more antibody therapy is better than less. Just looking at this single issue can tell us a lot about the different therapies. Clearly there is more risk in taking 3F8 because you run the risk of an early HAMA and not receiving enough therapy to get your child into the group with an apparently higher survival. With the ch14.18 and the hu14.18 you don't really run the same risk. Although they have a response similar to the HAMA these antibodies are so much more human that the responses are extremely transient and are not believed to have an effect on therapy. So, theoretically, you could keep taking these antibodies for extended periods of time. The problem is that with the ch14.18 trial you are only eligible for 5 rounds. That is it. So, theoretically, even if a child could have more because of the lack of an allergic response they will not get it. If the data regarding Sloan's experience regarding the amount of antibody therapy needed is true this simply may not be enough exposure. So, there you have it. They both have problems. The hu14.18/IL2 had this problem as well. They used to only make it available to children for four rounds. However, they had many children continue to respond and eventually opened the trial up so that children could receive up to 10 rounds if they met certain response criteria. This seems like the best potential route but there are problems with this as well. First, it is only available to relapsed and refractory patients and secondly there is speculation that it may not bind as well as some of the other antibodies. Ironically there is even some early clinical evidence which appears to show that the ch14.18 antibody may in fact do a bit of a better job. However, if you can't get it for extended periods what does that leave you.

Well I best be off. I am quite sure I thoroughly confused many but that was kind of my point. As of this date there is no definitive answer. I still suggest most families pursue investigating antibody therapy at some point in their neuroblastoma journey but there is still much more to be learned. There is no absolute. Don't kick yourself. I have studied this disease for 4 years and I have studied antibodies most fervently. There simply is no answer. You have to do the best for your child that you believe in. At this point, none of the answers are wrong.

Purpose does not bring clarity. It is not black and white.