Monday, December 3, 2007

December 2007 Posts

6:17 AM 12/3/2007

Good Morning! Well, here we are. I am getting ready to run upstairs to get pretty and run Sydney to Cook's. As if I haven't mentioned everyday since we found out about our overabundance of lymphoblasts, today is the day we go in for our second look bone marrow aspirate. I am not particularly looking forward to this. I have enough stress with the anesthesia much less the additive fear of what we might find. Regardless, we are off. Let the incessant worrying begin.

The kiddos had a pretty great weekend. We decorated the house for the Holidays and I kept myself occupied talking about antibodies on the list serv. Hey, it is my favorite subject. But, more importantly, I find that participating on the NBLAST list helps me cope. Not only is it a way for me to solidify things in my own mind but it is a great learning process. I spent quite a bit of time debating one antibody against another and that was quite fun but what is always even more exciting is the banter that goes on behind the scenes. I always have to be careful on the list. Accuracy is key and there are a lot of oncologists and researchers that secretly snoop. My favorite part of posting is when I receive a private message from the experts. You would be surprised at what I get. Sometimes it is kudos. Sometimes it is another argument. More often than not, it is one of them making fun of my stance on something. There are 3 of them in particular that keep me laughing in the background. First off, they all fundamentally disagree with each other. So, regardless of what I post, I am going to get a little bit of everything. Hopefully, if I have done my homework (I have learned to double-check), there aren't any corrections. There are always differing opinions and the funny thing about it is that they are all absolutely right, each and everyone of them. One is always mad that I am focusing on a dead horse, one is always providing me support through medical articles and one is always telling me that, although technically correct, I am off my rocker and I should be focusing on something else. The irony is that who is telling me what is constantly changing. Who would have thought that this is what I would be doing. Finally, and the most important part, is all of these people deeply care about our kids and are fighting tooth and nail.

Helping others and pushing the envelope makes it easier for me to cope with my own stress and worry.

I am nuts but having a purpose keeps me slightly sane.

4:24 AM 12/4/2007

Good Morning! Well, I am happy to report that Sydney had one of the best bone marrow aspiration and biopsy days that I can remember. We had a different anesthesiologist than we have ever used before and I have to say that we really appreciated his personality and demeanor. He had Sydney eating out of his hand and all of us laughing. Furthermore, he listened to our concerns and desires when it came to the drugs that he would be using on Sydney and it made all of the difference in the world. Remember, in our world, less is more. She woke up in a timely fashion with little pain and about as happy as she can be. Her pain was managed well and other than requiring some Tylenol later on in the day you would never know that she had been through a procedure. In the past we have had anesthesiologists blatantly disregard our opinion and argue with us. Some have even used drugs that we have asked them not to use. In those cases, universally, Sydney would have a tougher time with anesthesia, pain control, and recovery. In many cases she would also continue to have more lingering pain. It was so nice to have someone get what we were trying to achieve without putting her at further risk. Dr. Bert gets our favorite physician of the month award.

Dr. Eames called in the early afternoon with a preliminary report. At first glance under the microscope, Sydney's marrow appears to contain fewer lymphoblasts than previously. The cells in question are rare. They continue to not show as lone cells and do not appear in clumps, rosettes, or sheets. In the end, we will still need to wait for flow cytometry (due tonight) but this is all a good indication that this may be some normal process. We would certainly consider less better than more. Dr. Eames seems fairly certain that this is probably benign. Part 3 of the marrow testing will be the cytogenics. We don't expect to see those result for about a week. In short, whatever it is seems to be improved and I don't expect we would necessarily see that if it was cancer.

Well, I am off. There is a mountain of email awaiting me. I full day out of the office has left me behind.

Still praying purposefully.

5:22 AM 12/5/2007

Well, hmmm, I haven't heard anything. I don't take this as a particularly good sign. In fact, I pretty much take it as a bad one. Dr. Eames knows how nervous we are. I can not believe that if she had good news that she would be punishing us with another restless night. My best guess is that they are talking with Houston to figure out what to make of it. In this scenario, at the very least, we are dealing with some abnormalities with the flow cytometry that they just can't put their finger on. At the most, it is an obvious sign of cancer and they are conferring with others to figure out what to do in her unique case. Quite frankly, either way I would want to know. I just can't imagine that it is anything else. I understand that they are being very careful with Sydney. I know they are exploring every avenue and looking at every detail. For this reason I can only guess that whatever the have found may be unlike something that they have seen before.

Given that, it could be okay. It could be something a little strange but fundamentally okay. They just want to check there bases before they commit to telling us so. That is a possibility. My fear, however, has been my fear all along. What if it is related to the vaccine? What if these little lone cells are the beginning of some strange mutation. Yeah, sure. They could be the modified cells themselves but, if that were the case, we certainly would have seen them before this. Something is definitely fishy in the water. How fishy is the question and what will it mean? My fear is that no one knows? It is a very scary time around the Dungan household. Today will be a horrible day of stress. My gut is in knots and if it is any indication of what the rest of the day is going to hold in store I am not looking forward to it. Calgon isn't strong enough to take me away.

Purposefully praying...

5:10 AM 12/6/2007

Well, yesterday's post is a perfect example of being absolutely wrong. In fact, I don't think I have ever been happier to be wrong. The good news is that the flow cytometry came back utterly normal. It did not even pick up the cells that they were concerned with. Additionally, the bone biopsy came back normal as well. As long as we are delighting in how wrong I was, we might as well point out the fact that I was wrong about the number of tests as well. The number is not 3, but 4 and, ironically, this was also the cause of Lynley and I's near death experience. It appears that the delay was because they were waiting to give the flow cytometry results once the bone biopsy results came in. First, I was not aware that we were even doing the bone biopsy. It sounds perfectly logical but I just did not think they would go through the expense of it since we did it just one short month ago and it was not in question. For whatever good reason, however, they did. I did not know about it, was therefore not worried about it, and therefore, not considering that it could be those results that were causing the delay. Regardless, I was paranoid that they said they would call the night before with flow cytometry results and they didn't, so we had a little family freak out. I hereby give my permission for you to remind me the next time this type of thing happens that I am completely mental and, just because the doctors don't call when I think they should, it does not mean the sky is falling - which it was?!?. I guess our first test is now as we wait for the cytogenics. They are not due until next week. I promise to behave.

Now, I did get a nice email from one of the fathers telling me to keep my pants on and to take a chill pill. He was right. He knows that (from experience) and I know that. However, if it was that easy to do I probably would not need these diary to sort out my thoughts. Regardless, I deeply appreciated his sentiment and, had I been in any other frame of mind than the irrational one that seems to surface with fear, I probably would have been able to keep my wheels on. I didn't. I lost perspective. It is a hard thing to keep when you make that sporadic realization that the rug is about to be ripped out from under you again.

Just so everyone knows, it was a gentle reminder email to Dr. Eames that got us the answers. It went something like this:

Dr. Eames,
Ok, ok, I know I am mental, but I am dying over here!;) Hoping Sydney is not?
With hope and thanks,
Mark (father/nut case)

She called within 20 minutes.

Purpose is much easier than perspective to keep in balance.

6:10 AM 12/7/2007

Good morning! Well today I pick up the first batch of printed Lunch for Life Cookbooks. I can't wait. I am entirely too excited. This weekend I will be turning the Dungan Five into my shipping crew. We have roughly 1000 to get out this weekend alone. If you have not ordered one I strongly encourage you to. Tke cookbook is beautiful with well over 300 recipes and packed full of pictures of all of the children whose name the recipes were given in. It is quite a work of art and you know the proceeds are going to the right place. I had 3000 printed in this first go around so we still have a bit to sell before Christmas. I would not want to give away what I bought all of my friends for Christmas but lets just say it is a great gift. If you have not ordered 5 or 10 of these beauties yet, you can do so here:

While you are there don't forget, it is that time of year again. The Giving Trees are up on the Lunch for Life site and Sydney is checking it day and night. She loves to see the ornaments on her tree. Her page on the Lunch for Life site is Stop by, look at the pictures, sign the guestbook, and consider giving up Lunch for one day a month to help us fund research to cure neuroblastoma. There will be more to come in the near future. This years donations will also be used to fund a combination of drugs that we are trying to get in trial. I don't have permission to talk about it now but the preclinical data is the best I have ever seen and we are fighting to get it into our kids. I don't know that it will be the homerun we are all looking for but it is the first that I have seen that definitely could be. It could be the one. It will take our lunches though to bring it to these kids.

Purpose is power and we will fund the cure.

5:32 AM 1/10/2007

I thought I would drop a note just to show everyone how little control I actually have in this family. It starts out simple enough. Here I am, a father, just a regular old dad going about his business of daddydom. Last weekend was prime shopping time so we wrangled a babysitter (my mother) while the kids were napping and headed out into the big world to find some Christmas presents for the rugrats. You know, on Dasher, on Dancer, on Prancer, and Vixen. On Comet, on Cupid, on Dad in the Suburban. As a side note, I secretly knew to wait longer before we actually shopped for the kiddos because I know for a fact that they will be changing what they wanted for Christmas at least two more times between now and the big day. Regardless, it is my job as one of the official Santa's helpers to do as told, so I slapped on a happy face and we were off to Toys R' Us on a Saturday afternoon - two and a half weeks before Christmas. As expected, the traffic was horrendous around the mall. Some brilliant people with a cage full of FREE puppies had taken up camp on the side of the road to take advantage of all of the suckers that were stuck in traffic and stupid enough to pull over on the side of the road. Hold on, why are we pulling over? Lynley, what in the heck are you doing? No, no, no, no, no! This isn't on Santa's list.

Less than five minutes later we were pulling back on to the highway next to the mall. Lynley was driving again. There was a puppy sitting in my lap.

This was only the beginning of what I knew was going to be an incredible inconvenience to all of those that were close to us. Somehow, we were going to have to keep this thing a secret until the night before Christmas when I would have to (in keeping with my job of being an official Santa's helper) deliver the puppy to Santa so that he could distribute it to a deserving little boy or girl - namely Graham. For those of you that don't know a not so well known fact about Santa, due to overwhelming demand during the holidays, Santa often contracts with Mom's and Dad's throughout the world to help him get presents that are in short supply or that cannot be made in the workshop. Furthermore, it is cold at the North pole and he usually shies away from keeping live animals other than the reindeer that are adapted to the climate. For the others, he depends on helpers like ourselves to take care of them. Of course, when I say helpers like 'ourselves', I mean Dee who now has a new puppy living with her. Now, while you may think that we have levied this abuse on my mother without any other alternatives. That would be incorrect. We could keep this newest addition at other friend's houses or even at the vet. However, it is most convenient at my mother's house and, as I pointed out to her, I am sure Graham would really appreciate it if he knew (and one day he will!)

Regardless, we have now survived two days of shuffling a puppy and the stories are too numerous to mention. It is exhausting for all and if it weren't funny and it the gift didn't have such a great little benefactor I am sure we would have certainly put it back on the side of the road. Something tells me that this will be the source of some great stories between now and the big day. We are T minus 15 days.

Boy, and I thought I had purpose before.

5:57 AM 12/11/2007

Well, the little critter spent most of the day at home with me yesterday. I worked quietly on the couch whilst the little doglet slept in his cage. Occasionally he would yelp to see if I was still there but for the most part he simply snoozed away. During lunch I got him out for a couple of hours where he followed me around religiously. I let him play with all of Grahams things and even switched out his blanket to one of Graham's so that he would get used to his smell and associate it with safety and comfort. Hogan, our large Golden Retriever, sat patiently by and helped me care for the critter. Hogan took to the little tike like a fish to water and takes great joy in letting him bite at his whiskers. So far, the first day with the puppy (codenamed "football") went wonderfully. On my way to pick up the kids from school I dropped him back off with DeeDee.

Sydney gave me a bit of a scare yesterday as I picked her up from school. Almost as soon as she got in the car she started screaming that her head hurt. Always assuming the worst in this case it made me nervous. Regardless, I had her drink some juice and followed with the questions. While I never will know if I am right, I am hoping it was a sign of dehydration. She told me that she forgot to drink all day. While I don't know why this would have been set on by the cold outside, it certainly seems to have been that way. Today, I am sending her to school with a water bottle and instructions to continue drinking all day. I am hoping and praying that we do not see any more headaches.

Well, I best be off. My mother has small flood in her kitchen, I need to puppy sit the football, and there are rugrats to get ready for school.

Also, if you have not already, you need to order your cookbooks ( before Friday if you want to get them before Christmas.

My purpose is off and running.

5:06 AM 12/12/2007

Good morning! So, this will be a very quick update. The kids are asleep upstairs but unbeknownst to them, Norman (our newest addition) had a little sleep over with us. In an effort to give my mother a complete night of restful slumber, we snuck the little Christmas present over here for the night. I am happy to report that he slept through the night and was completely and utterly silent. This morning, however, he and his new big brother Hogan (our 4 year old Golden Retriever), the lummox, are having great fun lumbering around downstairs. The trick will be to get him out of the house and back over to my mother's house before they wake. Oh, I tell you, there is big excitement around here. I still can't believe that we made it through an entire night without the kiddos knowing he was here. Being sneaky is so much fun! I love Christmas and I just can't wait to see the look on their faces when Santa delivers him on Christmas morning. It will be completely and utterly wonderful. In the meantime I do have to run. I have some puppy sitting to do as I wait for the word from my mother that she is up and I can take him back over to her house. In the meantime, I will leave you with one of the first photographs of the little twerp pupplet.

Ain't purpose grand.

6:05 AM 12/13/2007

Good morning! Well we made it through a complete night with Norman the puplet and the kids had no clue. I am a little amazed. I was able to usher him out the door and back over to my mother's house before any were the wiser. I just love the Holidays.

Yesterday was really about Sydney, however. You see, Sydney's class was going on the Polar Express, a train ride from the stockyards in Cow town to the Target, of all places, on 7th and back. It all began in the morning when I dropped off all of the kids at school. Sydney was dressed appropriately in her pink jammies, robe, and slippers. I, of course, who would be going with them later in the day was wearing a golf turtleneck, a cardigan, and slacks. Just so you know, I received a stern lecture from Sydney's teacher that if I was going to be going on the Polar Express I would need to be wearing my jammies as well. I contemplated telling her that I did not have any, that I slept in the buff (not true) but I did not think that would go over well in my daughter's nice Christian school. I decided, instead, to tuck my tail between my legs and mutter "Yes, Mam."

As you can see, this started off a bit questionably. Now, I had to go find some jammies. I really wasn't interested in driving 30 minutes back to the house and I desperately needed to deliver a truckload full of Lunch for Life Cookbooks. I decided instead to duck into Albertson's very quickly. This is where my day took a change for the better. They had a pair of Tony Romo Dallas Cowboy jammies in just my size. It does not get any better. Clearly Santa was coming twice this year. Regardless, I made me deliveries and did the quick change. Unfortunately, I had no slippers so there I appeared in my bran new Tony Romo Dallas Cowboy jammies and black lizard cowboy boots. I should have been arrested on sight.

The ride on the Polar express was fun. I elected to let Sydney sit by her best friend whose Daddy did not make the ride. Although I did not get to sit with her I was happy to see the two of them have a spectacular time. We even got to sing some of our favorite carols together. In the end it was over in a flash. I kept Sydney with me the remainder of the day and she helped me shop and run errands. We had a great afternoon together. For having a day that started with a lecture I sure was thankful for the way it turned out.

That is often how purpose can work.

5:06 AM 12/14/2007

Okay, so I would just like to point out that I have been a very good little daddy ever since the other NB father advised me to chill out about scans and tests in an effort to keep myself from having a heart attack and/or mental breakdown. You may even notice that I have not come close to mentioning the cytogenics. I have purposefully not worried to my diary. However, I have to admit that I really don't know how comfortable I am about not worrying. It has become a specialty of mine and for good reason. Now, here is a glimpse into the fragile psyches of Lynley and I. I have often said that I was not superstitious before I stepped into the cancer world. In fact, I thought it was pretty ridiculous. I can even get through my "normal " life without being that way. In this sense, superstition is stupid. But, when it comes to cancer, our routine has been defined by superstition.

For example, there are several ways to drive to the hospital from our house. However, I always drive the same exact way for fear of messing with the delicate balance of the world. Oddly enough, this started because of when we had our fateful day when the MRI came back abnormal. For some unknown reason, I had driven to the hospital a different way. From that point on I did not really want to drive that way anymore and I figured, what the hay, maybe it won't hurt. So, that became a superstition and now I will literally turn around and drive back towards the house if I catch myself going the wrong way. Ludicrous, isn't it. I know that. You know that. But, I am still just not yet ready to break the habit and I have no desire to drive to the hospital any other way.

So another one of our crazy little superstitions that keeps Sydney from relapsing is the fact that we worry appropriately enough. Don't laugh. I am serious. When you get too comfortable with life, when you have too much confidence is when it jumps up to bite you. We also learned this lesson from experience. So, both Lynley and I have found that if we worry about it enough it just won't happen. So, I tell you all of this because I have been very good about not worrying about the immunocytology out loud. But just so you know I have secretly worried about it plenty inside.

I am continually amazed at how nuts this disease makes us. It is still fear like I have never known and one that I would not want to bestow upon anyone. The good thing about it though is that it is a great motivator. It always reminds us of what is important in our lives and where our focus should be. In this sense it is a gift that just keeps on giving reminder. Everybody loves there children. However, there are only certain moments when you get to sit back and really reflect on that. That moment when you feel that little tingle in your chest that says "Dear God, I am lucky for you." Even in the hustle and bustle of daily life - getting the kids dressed, breakfasts made, lunches made and packed, jackets on, driven to school, work, laundry, honey dos - the gift I have received from this dreadful disease is the ability to remember what is important. I get a little poke several times a day that says "look, appreciate, you are the luckiest man in the world."

That is purpose.

6:07 AM 12/17/2007

Just for the record this is not how I wanted to spend my Monday morning. However, it seems that, for some reason the server that holds Sydney's site is down. This is the same server ithat several of my other sites are on as well. This is not a particularly good thing especially considering this is also the server in which Lunch for Life resides. So, to make a long story short, here I sit in the middle of a very loud collocation facility waiting for my server to turn on. Just so you know, that is not going particularly well. I guess the true irony is the fact that I am sitting here writing a diary entry for a blog that is on a server that may not ever come up again.
What I would have much rather been telling you about this morning is my dear beloved son who has been taking a great interest in the presents under the tree.

You see, this weekend was actually much more about catching up on all of the little tasks that we so desperately needed to get done around the house. One of those little chores was finally getting around to wrapping all of the presents to go under the Christmas Tree. I am happy to say that Lynley took about 3 hours on Saturday to run over to DeeDee's house to get the job done while I held down the fort and quietly listened for the little pitter patter of twerp feet above my head during nap time.

Later that afternoon Lynley brought home a mountain of wrapped presents to put around the tree. Graham took great interest in helping us bring the presents in from the car. In fact, I would even go as far as to say that he was downright helpful which is quiet a stretch for a 3 year old. Anyway, he inspected each and every present and would bring each one to me to identify exactly who it was from and who it was for. He was clearly scheming but I was just happy to see him take such an interest and was willing to let it go. As the afternoon wore on to evening it got busy around the Dungan household. Lynley and I spent much of our time chasing kiddos and working around the house. I noticed that Graham had disappeared on occasion but this is somewhat normal behavior for twerps so I did not think much of that either. Even later on Lynley began to notice that the pile of presents around the tree were shrinking. We decided to watch far more closely. We eventually saw what the boy was doing. He was taking all of his presents and hiding them under his bed.

Just so you know this is a favorite place of the Dunganlets. You will often find candy, half eaten doughnuts, and cake under there. Regardless, when his mother finally questioned him, he assured us that he was only placing them there for safe keeping. Apparently he was very worried that Ainsley would steal them. We asked him not to do this and took all the presents back downstairs. Ironically we discovered the same theme seemed to be happening on Sunday as well. I decided to let it go but I am contemplating wrapping some presents for him myself - something smelly. We shall see how long that lasts. I know, what an evil thing for a dad to do. But hey, this is not only parenting.

This is purpose.

4:10 AM 12/18/2007

Good morning! Well, here we are and we are sneaking up on Christmas. What I have not done this year is to beg and plead with all of my Lunch for Lifers to go and give up a lunch. Now, I know most of Sydney's loyal followers have already given up lunch and convinced all of their friends to do the same even though I had not yet asked. However, I was looking at the Lunch for Life site today ( and I noticed that we have raised about $188,450.00 so far this holiday season. I think the greatest gift that we could possibly give these kids this Christmas season is if we could top the $250,000.00 by Christmas. Now, I know that this is an extremely long shot. I know this won't be easy to do but I do think it can be done. If we raised $150,000.00 in just 10 days when this whole thing began, then there is no doubt in my mind that we can raise $62,000 between now and Christmas. However, I will need all of your help to do it. It will require calling and emailing all of your friends and asking them to fulfill this Christmas wish. I am going to start off and I am going to give up eating lunch everyday and I am going to donate my lunch money to Lunch for Life until we hit the $250,000.00 mark. Yes, every morning I am going to come to the Lunch for Life site (the page mentioned above) and I am going to donate my lunch until I see that number climb over $250,000.00.

I can't do this alone, so, I am asking you to join me. I understand if you can't afford to give up lunch everyday during the holiday season. Heck, I have 3 kids, I can't either. But I am going to do everything that I can and I am going to commit my lunch everyday. I know all of these kids with neuroblastoma would gladly go without Christmas and presents, much less lunch, to live. The least I can do is give up some lunches. I can do that. We can do that. We can help them live. We are that close. I am asking you to join me. We will have a lunch club of our own. Let's hit the $250,000.00 mark together. Whether it is one lunch this week or a lunch everyday I sincerely appreciate your help. It is the end of the year. Let's make some tax deductions.

I can also tell you that I feel that we are closer than ever and I know that we will see some new drugs and different combinations hit neuroblastoma in the next year that will truly change the survival. I believe in the bottom of my heart that there is one drug (in particular) that, when used with other drugs, could increase the survival rate by 10%, 20% or even more. In fact, there is a small group of us trying to raise enough funds to buy the compound from the drug company to open a trial. Literally, next year at this time, 10% more children with neuroblastoma could be living because of this effort alone. That is 65 kids in the US alone that could live next year because of the lunches that we give this week. That is how close we are and this is exactly the point of Lunch for Life. We will speed the cure. We will find the answer.

Give up lunch! Tell your friends and your families and the people you work with. Let's save these kids in the next 8 days. Now that is a Christmas present.

That is purpose!

Oh, and if you are looking for a particular child to donate in honor of, Sydney still loves to see the ornaments grow on her tree. You can use her Giving Tree code. It is 26965. We will be checking it everyday. It is Sydney's purpose, too.

5:14 AM 12/19/2007

Good morning! I am happy to report that all of the kiddos seem to be in fine working order. In fact, they are down right exceptional. I love Santa Claus. The power he wields over these kiddos is just downright amazing. The moment they get the inkling to start behaving badly (and boy do they) all I have to do is mention the round guy and my little twerplets snap back into form. I just have to figure out a way to keep this going until we send them off to college.

Earlier this week the nationally syndicated USA Radio Network's morning show DayBreak USA contacted me to be a guest on their show. They asked if I would mind being interviewed about Sydney, neuroblastoma, and Lunch for Life. It was a part of the radio show's Five Days of Doing. Each day this week they are focusing on a deserving charity to bring attention too and on Monday we were it. They spent quite a bit of time on the phone with me and with Pat Tallungan discussing our children and neuroblastoma. I was so incredibly thankful for the opportunity. It means so much to be able to share our stories and to educate people about childhood cancer. To this day, I still believe that if people truly knew that "cancer kids" were just normal kids that got a unlucky straw that we would have cured these diseases by now. Nobody would stand for the incredible lack of funding. I am still shocked by the fact the our federal government spends less than $25 million dollars per year on our nations number 1 disease killer of children - pediatric cancer. Can you believe that or am I just being sensitive. Especially considering what they send oversees, what the spend on the war, and what they spend other diseases and on adult populations. Regardless, the point is I am so thankful to have the opportunity to get the word out. It makes a huge impact. The first key to success for our children will be in winning the battle of awareness.

Unfortunately, I did not mention this on Monday so people could tune in. Embarrassingly, I did not know what stations they were played on throughout the country. I only knew that they produced the show here in Dallas. Regardless, they did send us some of the interviews via MP3 files and I posted them on the Lunch for Life site. You can find them here: They really did a nice job. My interview spans the first two files and Pat Tallungan's, the president of the CNCF, span the second two files. They are well worth a listen and if you feel inspired please write them and thank them at Their help truly makes a difference.

Finally, a quick gander at the Lunch for Life site shows that we are up to $191,660.00 this morning. We are still under my goal of $250,000.00 so I am continuing my second day of my lunch fasting for life. Today I will donate another lunch to Lunch for Life. If you can afford it I ask you to do the same but, none the less, please ask everyone you know to give up a lunch and do the same today. During the days between now and Christmas we can actually raise enough money for a clinical trial that would not happen without our lunches. We have that much power. We can actually fund a complete phase 1 trial - just with the lunches we give between now and Christmas.

I hope your peanut butter sandwich is as good as mine.

This is purpose in action.

5:14 AM 12/20/2007

Good Morning! Well, here we are, another day closer to Christmas and another day closer to being unable to wield the mighty sword of Santa Claus peeking in the windows looking for bad little boys and girls. It just works so brilliantly. The kiddos really have been fundamentally good. I have been very proud and, aside from Graham's habit of stealing presents from under our now dead and wilty Christmas tree, I think everything is going well. I can always tell when he has been under there. Like Hansel and Gretel he leaves a little trail of pine needles all the way up to his room. I am just thankful that he isn't nearly as sneaky as Ainsley who relies on her stealth to get away with murder, quite successfully I might add. The funny thing about Ainsley is that you never catch her in the act. You might catch her because the mess she left behind. You might catch her as she finishes something, such as pulling off all of the toilet paper on the roll. But, very rarely will you ever catch her starting to do something wrong or in the process of it. Ainsley will make sure she was already done with whatever she was doing before she will let anyone catch her. In fact, we usually simply catch her, not because we saw her do something, but through the process of elimination. As in "Okay, Sydney is writing in her cat book, Graham is playing maid with his vacuum cleaner, Lynley is cleaning the den. I am folding laundry. All of the animals are outside. DeeDee is at her house. Okay, it must be Ainsley who cut the fringe off of the oriental carpet." Yes, this is what I am dealing with!

I notice with a quick glance at the Lunch for Life site that we are up to $194,580.00. It is still a few dollars shy of my goal of $250,000.00 so today I enter my third day of lunch fasting and I will contribute another lunch. We are doing well. It will be a stretch to hit my goal by Christmas but I am pleased to see so many dedicated to hitting this goal. We will get there. It is too important. My new diet has already lost me 2 pounds. Just a few more days and I will be back to my pre thanksgiving fighting weight - the one where I did not finish the day with a red ring around my waist from pants that were too tight. If I keep this up I might even convince Mrs. Claus to put a little gift under my tree. Hubba, hubba. (Dear God, please do not tell her I just said that.)

Well, it seems I had best be off. There is a mountain of email to get through and a day full of meetings lies ahead.

Purpose, purpose everywhere.

5:50 AM 12/21/2007

Good morning! We are up to $197,525.00. That means that we will be hopefully cross the $200,000.00 mark today. I am keeping my fingers crossed. That is a pretty huge milestone and just think - we have done that with our lunch money. Even though I have now done this for 4 years that still just blows me away. It isn't that we have a bunch of $1000, $5000, or even $10,000 donors. This simply came from our lunch money. Sometimes it was a monthly donation, sometimes a yearly donation, but it is just that, lunch money. Amazing!

Regardless, we have not reached our mark so I must continue on my lunch fast and I will be donating my lunch again today. I can't wait to see it top $200,000.00. If you can, please help us get there.

Well, this is going to be a very quick update. Today we have battling Christmas parties at both Graham and Ainsley's School and at Sydney's. This will require a parental split and some quick maneuvering. Plus, there are presents to pack for other kids and the teachers and, for some reason, Lynley just came in the room and asked me to run to the store for some ice. As much as I would love to stay in here and type I had better listen to her. I don't want to get into trouble this close to Christmas. After all, Santa could be watching!

He has lots of purpose too.

5:25 AM 12/24/2007

'Twas the morning before Christmas and all through the house, not a creature was stirring except for a little maniac puppy who desperately needs a boy. Wow, it is hard to believe that 2 and a half weeks have passed by and Christmas is already here. In so many ways, I can not believe that we made it this far. Think about it. We have had a puppy in our house just about everyday since Lynley made us get it. Of course, we have to give a special thanks to DeeDee who has helped us tremendously in keeping Santa's little present from prying eyes. The key point is that the children have no clue. I must admit, I do have a sense of pride as I sit down on my couch in the den and play with the little booger. He is just so darn adorable. I can't wait until Graham opens the box and finds this little puppy inside. I think this is one of those perfect examples of creating a memories that will last forever. The kiddo's are all ready to go and I just can't wait. It is now time to turn over the reigns to Santa.

Today he has all the purpose.

6:00 AM 12/26/2007

'Twas the day after Christmas and all through the house ALL of the creatures were stirring including the new mouse. Yes, you heard it hear first. The football (codename we used for Norman, our new puppy, over the last few weeks) is in the stadium. I think the biggest irony of this Christmas is what will go down in history as "The Great Gift Shift." Sure, Graham showed the requisite amount of Christmas excitement at seeing his new puppy for the first time. However, the interesting thing was the level of interest that Sydney showed in the little booger. Before long Sydney had adopted him and had convinced Graham to let her take care of the puppy for the entire day. As I looked around the room I noticed that Ainsley was playing Sydney's new piano, Graham was playing with Ainsley's new kitchen, and somehow Sydney had attached herself to Norman. This is pretty much how the rest of the day would play out. It was truly a shocking conclusion to the days events. I was expecting Norman to be completely worn out from all of the activity of Christmas. The last place I though it would come from is Sydney. Yes, Sydney, my daughter, half girl - half cat, has gone to the dark side. I am sure her kitty cat brethren is about to disown her. But, yes, she seems to be Norman's new mommy. Who would have "thunk" it?

Well, I had best be off. I am not technically aloud to be on my computer today (Lynley rule) and I need to get upstairs and help with the waking of twerps. I just could not help myself. I had to share this interesting twist of events. I also have to point out that Lunch for Life is up to $238,559.00. This is just a little over $11,000.00 under my holiday goal of $250,000.00. Today, I will continue my lunch fast. I know we can make our goal by the end of the year. We are so close. I encourage everyone to give up a lunch today. It is almost the end of the year. Get those charitable contributions in!

Purpose, a tax break, and a cure. You can't beat that.

6:44 AM 12/28/2007

Well, yesterday did not turn out exactly as expected. For lunch, Sydney took the kids and her parents to the Purple Cow to dine. I got the opportunity to do some work and visit with my grandmother a bit. When Lynley arrived back home she performed a kid handoff and I began the process of putting G-man and Miss A down for naps. All was fine and dandy. Ainsley was twerpfully delicious and Graham was sufficiently giggly. No matter, a couple of snuggles and they were off to neverland. I made my way downstairs and got the full scoop on lunch. With the exception of Graham upending himself in the car (don't ask me how) and bonking his head and then another head bonk on the table in the restaurant to complete his injury symmetry, everything went splendidly. I was not particularly concerned considering how goofily normal the boy was when I put him to bed. Regardless, I got back to typing on the keyboard and Lynley, Sydney, and her family made their way out the door for an afternoon of shopping.

The kiddos slept well. I was pleasantly surprised. It was not until about 3:15 that Graham dawned the top of the stairway. I brought him downstairs and plied him full of juice and SpongeBob on the tube. He was perfectly normal. At about 3:45 Graham made a race for the bathroom where he scored a bowl full of diarrhea. This in and of itself was not alarming. After all, I have seen this before. He made his way back to the couch. At about this time Mom had made it back home. At the same moment I heard Ainsley stirring upstairs. I made my way up to gather her. Upstairs we changed her diaper, got her dressed, and gave her the requisite amount of kisses. I carried her back downstairs to find that the world had nearly exploded.

There was Graham, spewing vomit from every orifice. Lynley was trying as hard as she good to catch it but it was everywhere. It was all over the couch, his clothes, the floor - you name it. I made several trips in and out of the room ushering in new towels and clothes and removing the spew covered filth. Just at about the same time that we had him recovered from his explosive escapade up it all came again. To be honest, neither Lynley nor I really thought it was necessarily head related. However, if you hit your head, one of the first watch signs is vomiting. We gave him a quick once over. Everything else looked pretty normal. I never saw him hit his head so I had to rely on Lynley to make the judgment call. To be on the safe side, we decided to take him to the ER.

I could really go into a long explanation but I will save you the reading. We arrived at 4:45PM. We left at 10:15PM. After a CT scan and some Zofran the boy was pronounced perfectly unbroken. We brought him home and tucked him into his bed.

It was definitely not the purpose I had expected when we started the day.

Friday, November 2, 2007

November 2007 Posts

6:52 AM 11/2/2007

Good Morning! Well, I am happy to report that this is the first morning that I have had internet access in over two weeks. Unfortunately, I am in a rush to post the new Lunch for Life website ( and I have to run. Hopefully, I will be able to get it up some time this morning. Only time (and internet access) will tell. I am also glad to report that the kiddos all survived Halloween. It was, once again, proof that candy and sugar officially makes kids nuts (and a little - okay a lot - psycho.) This, of course, would not mean that I am calling my very own children psycho - they are more of the high energy compulsively deranged type.

Well, I do have to run. Today should be the day.

Purpose is in over drive.

5:02 AM 11/5/2007

Good morning! Well, I did it. I finally got the brand new Lunch for Life website up. It certainly did not happen without hiccups but I am proud to say that it is there for the whole wide world to see. There is still much more to come. There are many other new features that I will be rolling out over the coming weeks but I am pretty happy with my first stab at it. I would genuinely appreciate it if you would visit the site at and give it a looksy. You can even visit Sydney's personal site within Lunch for Life at You will be happy to know that in the coming week I will be adding a photo gallery to each child's website that will include new pictures of Sydney and the rest of the kids. For those that have written me about updating her pictures, you will be happy with this new feature because I will be in charge of actually putting up Sydney's pictures. Regardless, I would be really appreciative of any thoughts and/or constructive criticism.

Well, I must catch you up with all of the goings on with the Dungan five. Most notable in recent history was our parent teacher conference with Sydney's teacher. To be honest, I really do not know what to make of the whole situation. Some issues we were aware of. i.e. she is a social butterfly and class clown. She loves to make people laugh and can often be found chit chatting and giggling with her friends. Sometimes this gets her into trouble. Her best friend and numero uno giggle partner have been separated and we are hoping this will help to keep her focus. Again, this is stuff we were aware of. There were no surprises here and we were as anxious as the teacher to find a solution for her - ah - playful exuberance. It seems Sydney is more like me than I had thought.

It was the rest of the meeting and the assessment of her academic performance that left me in a quandary. I have no clue how she is doing - and I am a pretty smart guy. It seems that schools no longer like to provide comparable grades. Apparently this would create competition and I am supposing that is now taboo. So instead of getting As and Bs we know get an 'S' for satisfies requirements. There is also an 'N' for needs improvement and an 'E' for something else. Then, after all of that nonsense, there are is series of slashes and Xs which are supposed to be descriptive of whether they can accomplish certain tasks. The problem with this system is that we have no idea of what tasks she should be accomplishing at this time or how she compares to other children in class. We know that she can do some things, she can't do others, and no sense of what it all means. Sure, I know that she needs to be able to accurately count to 100. But, does she need to know that by now or by the end of the year? Is this something that they are teaching and she has not mastered. Are the other kids doing it. Is this something that we should be concentrating on with her. There were a list of at least 50 of these little tasks and unfortunately I have no idea where or what to start. I just need a grade. I need to know how she is doing. And yet, here I am, a fairly clever guy and I am at a complete loss. All I know for sure is that the teacher said that she is a bright little girl. Great, but what do we need to do?

Does this mean I get and 'S' for purpose or an 'N', an 'X' or a "/"?

2:51 AM 11/6/2007

Wow! This one sneaked up on us. Believe it or not, today is scan day for Sydney. You may notice that I said scan day instead of scan week. Yep, that was not a mistake. This will be our first stab at our new modified scanning schedule. We have cut the fat and Sydney will only be having a bone scan and bone marrow biopsy and aspiration. That is it. We have cut both the CT and the MIBG from our normal scanning schedule. We are hoping her little body may appreciate the hiatus from radiation. Plus, this might just be the change that keeps her body from glowing at keeping her future husband up at night. None the less, it will still be an action packed day. The festivities will begin at roughly 7:45 AM with a visit to the clinic. We will then be ushered to radiology at 8:30 for an IV placement and a little bone juice for our scan later. Then, we will commence waiting and eventually we will make our way up to the second floor and the surgical waiting area. Sydney will be going under the knife at roughly 12:00. That will be followed by a bone scan a little bit later in the afternoon. It will be a full day of poking and prodding and waiting for our little girl.

The other important thing to note for all of you Texas residents is that this is the day to vote. I urge you to run down to vote and support proposition 15. This is the ballot item that will secure up to 3 billion dollars in cancer research funding in the state of Texas. Not only will this be great for cancer research and kids like Sydney but it will also make Texas the leader in cancer research. Furthermore, because of the structure of the proposition, it will also encourage private funding to match that of the government. This will effectively double the 3 billion dollars. If that isn't enough I truly believe that this will be good for the Texas economy. It will bring a significant amount of investment into the state. It is a win, win for everybody. Please, if you live in the state of Texas - go out and vote to pass proposition 15.

(this add paid for by a very desperate Dad who just wants to find the cure.)

Well, I had best be off. Perhaps, now I can sleep. Please keep Sydney in your thoughts and prayers today. It will be a long day for her and the beginning of a few nail biting ones for all of us.

See, lot's of purpose today. Today you can make a difference.

5:36 AM 11/7/2007

Good Morning! Well, I am happy to report that yesterday was, for the most part, very successful. Sydney tolerated her bone marrow biopsy and aspiration like a true champ. I have never been more proud of her. She was the perfect little girl, even when faced with some pretty serious adversity. As you may remember, IV placements can be quite a challenge for Sydney and the nurses. Over the years she has become even harder to hit. In fact, these days she is about as hard of a stick as you can find. She is nearly impossible to get an IV in. Unfortunately, I don't think anyone ever believes us. We usually get that "Oh, sure she is. (you naive parents, you don't know what you are talking about.)" This is usually followed by a couple of misses and the nurse giving up in tears. It would really be much easier on everyone if, from the very beginning, they would listen to us and bring in the specialists. As it was, yesterday she received 4 sticks before all of the nurses finally gave up. In fact, we finally convinced them to just place the IV while she was sedated. Just so you know, the sedatives usually have the nice effect of relaxing the veins and making the process much easier. Furthermore, the body is relaxed which makes the process even easier. Regardless, even after all of the failed attempts, Sydney maintained her composure and was just about the sweetest thing you could imagine. I am amazed by her strength and reserve. I would have ripped off some heads by that point. In fact, I was pretty close to that point already. All of this is really for not. It is interesting and frustrating but the important thing to take from yesterday is that Sydney made it through all of her procedures and scans with flying colors. Now the hard part is the waiting.

Another great piece of news to come out of yesterday was that it looks like Proposition 15 has passed. This is great news for cancer research and, I believe, the state economy in general. It will stimulate investment in medical research and the state of Texas. It is another reason to be proud.

Well, I had best be off. There is still a mountain of work and email to catch up on. Additionally, it is also a good way to keep my brain occupied. Hopefully, it will help reduce the usual scan week jitters. We are praying for continued clean results and good health.

It was a day that purpose won.

5:12 AM 11/8/2007

I guess no news is good news but we still have not heard anything. There is one thing that I certainly have not gotten any better about since this whole mess began. That one thing is the fact that I absolutely despise waiting for test results. Furthermore, I can't ever really explain how important getting test results is to the various oncologists that we have come into contact with. I understand they are busy saving lives. I certainly don't want them to be sending me email or calling me on the phone while they could be helping someone in the hospital. However, I think there should be a process in place to ensure that scan results are reported to parents as quickly as possible. Every result matters and to the family that has a child with cancer (at least me) every finding is life and death. It is just like getting a report card. The only difference is a passing grade means you will survive and a failing grade means your child likely will not. In my eyes, it is the most important result in the world and it just kills me to know that the answers are sitting in a computer file somewhere and I just have to wait until someone decides it is convenient enough to look at it. Yes, I know. I am high maintenance. But, come on. This is my daughter's future that hangs in the balance. I need to know.

There you go. Another glimpse into my twisted delicate psyche.

I need answers. It is my purpose we are talking about.

5:12 AM 11/9/2007

In case you are wondering, NO, I still have not heard anything. Since I spent yesterday's journal entry complaining about that, you might think that I would not spend another day whining and moaning about it. Well, sorry, that just isn't the way that it works. I have got needs. So, just on case I did not make my point yesterday. This is freaking torture. I hate it, hate it, hate it. (Full fledged temper tantrum with arms flailing and pounding on the floor) I hate to do that in such a public forum but, obviously, politely talking about my dislike of not receiving scan results was not getting the job done. Today, I will be forced to make the phone call. I need the truth.

Okay, just so we can remember what a busy day yesterday was I will give you an overview. At 8:30 the kiddos all went to school. At 9:45 I picked up Ainsley and Graham for a dentist appointment. I am happy to report that they continue to have all of their teeth. Graham's dead tooth, the one he banged on the side of the pool a few months back, has continued to deteriorate at the root. For all practical purposes though, and with the one exception, they both seem to have a mouth full of healthy teeth. At 11:00 AM I took them back to school. I then made my way over to the printer who will be doing our Lunch for Life Cookbooks. We negotiated the price and looked at some samples. After that I picked up a new printer - mine is on its last rubber footy. At this point I thought it would be nice to ask my wife to lunch so that I could update her on the days events. Just as we were being seated at the restaurant we received a call. A water main blew at the school. We had to go pick up Sydney. I immediately dropped off Lynley back at work and made my way back across town to pick up the squirt. It was now roughly 1:30. With a 30 minute commute back home and then another one out in this direction to pick up the squirts in about an hour and a half I elected to wait it out and take one twerp (or Twerp #1, I guess I should say) to the mall for a new pair of black school shoes, a walk through the Disney Store, and a new cardigan for Dad. Fully fun-filled and dapper we made our way to Arborlawn to pick up the remaining gaggle.

This was not the day of work that I had planned for but I guess it is alright. I got to spend some time with the kids and I would not have been able to concentrate anyway.

Still purposefully waiting...

4:41 AM 11/12/2007

Well, I wish I could tell you that Sydney's marrows were okay. Unfortunately, I can not. We received a phone call late Friday afternoon with the news. It appears that Sydney has some abnormalities with her marrow. The good thing that can be taken out of all of this is that they don't immediately expect neuroblastoma. The bad news is that they can't absolutely rule it out and worse yet they are suspecting the possibility of leukemia. Obviously, this really is not the news that we were looking for. So, what do we know?

Well, we know that they found a concentration of roughly 3% of her marrow that consisted of lymphoblasts. Lymphoblasts are immature cells which typically differentiate to form mature lymphocytes (a type of white blood cell). Normally lymphoblasts are found in the bone marrow, but in Acute Lymphoblastic Leukemia (ALL) they proliferate uncontrollably and are found in large numbers in the peripheral blood. The problem with Sydney is that they found an abnormally high concentration of lymphoblasts in her marrow. The good news, in this sense, is that the count is not enough to be considered Leukemia and her peripheral blood was considered completely normal. As a side note, you are considered in remission from leukemia when your marrow has less than 5% lymphoblasts. Finally, typically when someone is diagnosed with leukemia they have a much higher concentration of lymphoblasts, anywhere from 15% to 90% or more.

Sydney is somewhere in the middle. She has more lymphoblasts than are considered normal and less than a full fledged leukemia. However, with all that she has been exposed to she is at a higher risk of leukemia and this is something we have to be concerned with. This could be pre leukemia and we just can't rule that out. It will require another bone marrow aspiration and some more advanced testing to find out for sure. Unfortunately, they just did not take out enough marrow for flow cytometric analysis which would give us a clearer indication of what was going on. Another scary aside to all of this is that neuroblastoma can mimic a certain type of lymphoblast (FAB L3). We can't rule that out either. Thankfully, we can say that these cells were not found in sheets, clumped together, or appearing in rosettes (common for neuroblastoma cells) In short, we need another bone marrow aspiration to find out anything for sure but it could be much worse. Sydney's next bone marrow aspiration has been scheduled for the beginning of December.

Wow, what I downer. This really is not what we were hoping to find out but I am still thankful that they finally told us on Friday afternoon. It did take some urging to get the final call but they were nice enough to spend a considerable amount of time speaking with Lynley and I on the phone. Simply put, no one knows for sure what this means. The fact of the matter is that if you continue testing as hard and as much as we do you are eventually going to find these abnormalities that are going to slowly drive you insane. We just don't know what is normal for a child that is four and a half years out of diagnosis of neuroblastoma, with her history of treatment. Quite frankly, there is no one else like her. There is no one that has had her history of treatment. This very well may be normal. We just don't know.

Action items today are to get a hold of Heidi Russell and Doug Meyers down in Houston. These were the PI's on our vaccine trial and would have the best idea of what could or could not be going on. We are anxious to hear their take on this. It could be nothing or it could be everything. Regardless, it will be some nail biting, heart pounding days and weeks ahead for us.

With hope and prayers and purpose....

3:49 AM 11/13/2007

Okay, while I am not really closer to any kind of definitive answer, I am feeling better today. Yesterday morning I talked to Doug Myers, the principal investigator of the vaccine study. He spent quite a bit of time on the phone discussing Sydney's results and his theories with me. In a nut shell, he had no real definitive answer but he did have some more information to process. Much of what he said were things that I had mentioned yesterday in my diary. I.e. this could be normal for her. In fact, he made two pretty effective arguments that this was simply a benign occurrence, either a part of her normal marrow function or simply a small and normal blip in the history of marrow. He was still supportive of the idea of rescanning in 2 to 4 weeks and even requested some of the marrow for some further testing with RT-PCR. (I have discussed RT-PCR before but, if you don't remember, save yourself an hour of reading and just keep in mind that it is a very sensitive test.)

Now, the reason he wants the marrow is not simply out of the kindness of his heart. He does have ulterior motives and this is where it gets interesting. This is information that I did not know before yesterday. Essentially, Sydney was one of the first kids on the vaccine trial to have detectible levels of vaccine in her peripheral blood. Additionally, based on the blood that we sent down to Houston every month or so it also stayed detectible in her body for a pretty long time - more than the others, as I understand. They speculated as to why this might be the case. Perhaps, it was the activity of EBV (Epstein-Barr virus) in her body (remember EBV is what stimulates this "vaccine" to stay active) or maybe even the healthiness of her immune system. Regardless, for some reason, they were able to detect the vaccine in Sydney and continue to detect it for a longer period of time than most. To make a long story shorter, RT-PCR is the tool that they use to detect the vaccine. It may very well be that it is still active in her marrow and we are seeing it being stimulated. Regardless, this further testing will give as a clearer indication of what is going on. Either way, this was promising news on the heels of some funky marrow results. The vaccine got into and stayed with her. Interesting...

In the end, Dr. Doug's philosophies are that (a) Sydney's marrow is going through some natural processes as a result of the vaccine or (b) this is just a small hiccup in the lifetime of marrow that will most likely disappear by the next time we scan. Although abnormal for what we are used to looking at, everyone there seems to feel fairly confident that this is just a benign anomaly that will most likely disappear. Ironically, everyone knows what this could be (cancer) but they all seem to gravitate and point out the 100 other benign things that this could be as well.

The fact is we don't know. When it comes to bone marrow there is a lot more that the experts don't know than they do know. Factor in the fact that Sydney is a walking one-of-a-kind due to her treatment history and you will find that there just isn't any clear answer. Time will tell. I feel a bit better today but I am still not experiencing true signs of relief.

Still purposefully waiting for a definitive answer.

3:57 AM 11/15/2007

Good morning! Yes, I know, I took a day off. My preference would have been to wake up and write in my diary but on some days other items just seem more pressing. Yesterday was a perfect example. I woke up to four email from families that had pressing questions. I certainly understand the desperate need for information when you child is in a crunch in treatment so I always prioritize that above just about everything other than the immediate care for one of my own sick children. It just so happens that yesterday somebody left the flood gates open. It was good because I think I actually may have helped them. I have received a lot of email lately from families questioning an oncologist's choice of action in a relapse situation. In every case I believed the family to be right in their concern. I am always amazed at what some of these oncologists come up with. Regardless, I am not a doctor so I never dispense advice. What I do however is point them in the direction of somebody who does know what they are doing - an actual full-fledged neuroblastoma expert. In almost every case this has led to a change in the direction of the care of the patient and that makes me feel good. Well, scared and good. I am absolutely shocked by the lack of specific knowledge in the medical community when it comes to neuroblastoma. Bad (and I mean really bad) treatment choices are made everyday and parents generally have no choice but to trust in their oncologists. They don't want to get second opinions because often they fear some type of backlash or, worse yet, their oncologist has told them that it is unnecessary. In many cases this is costing lives and at the very least precious weeks, months, and years off of their lives and quality of it.

I don't mean to sound like I am on a high horse - like I know everything. I will be the first to admit I don't and I am certainly not a medical doctor. However, I know enough to know that this bad guidance is being offered and it is out there everywhere. I have heard from families at some of the most respected institutions in the world and trust me - most are not immune. I don't tell you this to scare you. I am not paranoid. But, somebody has to say it every once in awhile. Bottom line, if your are unsure regarding a specific course of action that your oncologist is suggesting, educate yourself. Talk to one of the experts. You will find out very quickly if you need to pursue another course of action. I am not guaranteeing that you will get the answer you want. I am not guaranteeing you will save your child's life. I am not even guaranteeing that you will get a definitive answer. But, you will receive better input and you will make better decisions for your child. In the end, it very well could save your child's life. I have seen that happen far more than once. Finally, if you have relapsed or refractory neuroblastoma, you have a questionable area on one of your child's scans, you have residual tumor, you have a tumor that no one at your hospital thinks is resectable after 5 rounds of chemo - get on the phone, write an email, get a hold of one of the many neuroblastoma experts. It makes a difference. Period. Don't be afraid.

Give your purpose power!

6:08 AM 11/16/2007

Good Morning! Wow, this week has absolutely flown by. Between a mountain of meetings and trips to the doctor for the kids the time has disappeared. I guess it is probably time for an update. Well, believe it or not, you throw out the whole too many lymphoblast thing in her marrow and Sydney is the healthiest of them all. Ainsley is currently the sicky. In fact, she is perhaps the most pathetic little twerple that I have ever heard. She seems to have maintained a good activity level. In fact, looking at her you probably would have no idea that she has anything wrong with her. However, the moment she opens her mouth, Elmer Fudd steps out and even he sounds a little hoarse. She also has the kind of cough that just makes you cringe the moment you see or hear it. It looks like it hurts terribly but in Ainsley's typical fashion she immediately forgets about it and goes back to happily doing whatever she was doing previously. We are hoping she makes a quick and speedy recovery and resists the temptation to spread it to the other kiddos. However, from her perspective, that is half of the fun of being sick. We really don't want any of them to be sick for our trip to Alabama next week. We shall see what happens but I am not getting my hopes up too high. Graham is not yet sick but the sensitive little dude is showing all of the signs of impending doom. He is crabby.

Well, I had best be off. I am guessing I will have a full day with Ainsley and we also have two school events to attend. It looks like I will have another work weekend.

Oh, big excitement! The Lunch for Life Cookbooks are available for sale on the website. The books will start shipping at the beginning of December. You can order them at

Another day of hope and purpose ahead.

4:12 AM 11/19/2007

Well, here we go. Today begins our trip to Alabama to visit Mimi and Papa. The kids can't wait. They have not been able to stop talking about it and have delighted in counting down each and every day. We fly out this afternoon and we will be there for roughly a week. The other good news is that Ainsley seems to be on the mend. While she isn't completely cured she has gone from needing a tissue 10 times an hour to roughly once and, if the bubbles coming out of her nose are any indication, she has begun to run clear. Unfortunately, I looked at the back of my throat yesterday afternoon and can see the lovely red bumpiness that sent her to the doctor in the first place. Yes, it looks like I will be the next victim of the snotty nose club. On the bright side, Lynley tolerated it fairly well so I am hopeful to be on the mend quickly. As far as Sydney and Graham are concerned -well - thus far they seemed to have skated by this little snotty nosed catastrophe. I am less surprised about Sydney but I am blown away that Graham has not been caught by the bug. It seems like Ainsley has tried to share cups on every occasion possible with him. I mentioned in my last entry that Ainsley would love nothing more than to get the others sick as well. While I don't truly believe that is the case, I think Ainsley would be hard pressed to be any more contagious. She is a walking germ constantly touching and sharing and spreading her insidious little germlets with everything and everyone that she can. Her contagion is not shy but rather a boisterous, sloppy drunk that affects everyone and everything in the room. Although she is my princess she is much more like Tinkerbelle than Sleeping Beauty. She is not easy listening, she is rock and roll all the way.

We have not really gone any further with Sydney. Both Lynley and I are content to wait until our upcoming bone marrow redo. I have bashed it around my head so many times that I have finally come to the conclusion that it is or it isn't whatever it is and, right now, there isn't a darn thing we can do about it. While I want to believe that it is nothing I certainly know of everything it could be. I can think of just about every one of the millions of possibilities that it could be - something benign and something malignant - yet not one of those thoughts does us any good. Worrying is not going to fix this. Regardless of what it is, it will take time to get to the bottom of it and I have come to accept that. While I hope and pray during every quiet moment alone, I have given up worrying. There is nothing that can be done right now. Now, I am going to enjoy my family and our vacation.

I don't know how often I will be able to update while in Alabama but I will do my best. I will be writing every morning but internet connectivity is always the tricky part at the Fowler fiefdom. The internet at their house uses a primitive form of Morris Code that I am yet to try and my cell phone internet access is spotty at best. Regardless, I will figure it out one way or another.

Have a Happy Thanksgiving and filling of purpose!

4:24 AM 11/21/2007

Good Morning! Here we are in happy Huntsville, AL. We all arrived safely on Monday afternoon. The kiddos were all great on the plane. Well, Ainsley doesn't exactly get an A+ because she elected not to take a nap, but other than that the kiddos were just great. It was a moment of pride for me. You just never know for sure what you are going to get but the kids are getting old enough now that we are much more likely to have a pleasant plane experience. Heck, for the most part, my rugrats are always pretty good flyers. But my favorite part of every trip continues to be the look on the peoples faces as we walk down the aisle. They all have that look of pure fear and you can hear their minds quietly chanting, over and over, "Please don't sit next to me." That makes it that much more fun to ask Lynley out loud if the seat next to them is ours, even when I know it is not. Yeah, I know - totally immature. However, that is the reason I had kids. They disguise my immaturity.

The kids have had a blast since the moment we arrived. They absolutely love to explore around Mimi and Papa's house. They must make 30 laps around the house an hour. Yesterday was pretty relaxed although we still got a lot accomplished. We had our Christmas pictures taken. We reinstalled the front pillars on the mother-in-law suite. I even got to get in a few hours of work. All in all, it was a pretty good day. I can't wait to see what today holds.

A few days of nice relaxing purpose.

4:46 AM 11/26/2007

Good morning! The Dungan Five have returned from their trip to Alabama and they are all happily home. The kiddos absolutely love visiting Huntsville, AL and their grandparents. They are still reeling from all of the fun they had at Mimi and Papa's house. One of their favorite things to do on the trip was to explore around the house. Whether inside or out the kiddos always found some type of adventure. Lynley, too, yearns to live back in the south. She misses the trees and all of the beauty. She also says that she misses the mountains but I have tried to explain to her that although they call themselves mountains they are actually just big hills. You should know beforehand that this accurate observation does not go over particularly well in the South. Regardless, she loves them and would love to move back some day. To be honest, I would not mind it. I just don't know that it would ever be a possibility considering Sydney's insurability and Lynley's retirement. Regardless, the point is that we had a wonderful time and are thankful for our Thanksgiving.

While it was nice to visit, it is also nice to get back home. The kids were all happy to be back in their beds and back to their toys and back yard. Although it rained nearly all day yesterday Graham still had to climb the tree. I tried to explain to him that is was far too cold and far too wet to climb trees but what do I know. I am just a dad. I elected to (carefully) let him find out for himself. Within a minute he was running back up the porch saying the tree was too wet and his hands were too cold. He decided that gloves would be the answer to his problems. This led to a hour long search for his gloves. In the end, he could only find the left hands to any of his gloves and refused to wear any of his sisters pretty pink ones. Somehow he convinced his mother to make a trip to Target for some new gloves. Oh sure, the big softy said she needed to pick up a few grocery items anyway and off they went. The next thing I knew they were back at Dungan manor. Dudely was suited up and ready to go back outside to climb the tree.

You may remember that this whole outdoor escapade began because I told Graham it was too cold and too wet outside and that he needed to find another activity indoors. Sure enough, looking like Nanook of the north and with hands stuffed in his new dark blue, waterproof, subzero gloves, Graham was trekking back out into the yard and to his favorite tree. It did not even take 30 seconds for him to turn around and come running back with tears in his eyes. "What is the matter son?" "I have to go inside (sob), my 'glubs' are getting wet and they'll be ruined!" He spent the rest of the playing inside with his sisters wearing his brand new gloves. He refuses to take them outside because they may get wet or, worse, dirty. Yep, that's my son. Worse yet, he still thinks that I do not know what I was talking about. It wasn't too cold or too wet for him to climb trees. It was just that the gloves could not take it.

Further proof that he did not fall far from his fathers tree.

He clearly does not understand his gloves purpose. I wonder if he gets mine?

4:55 AM 11/27/2007

Good Morning! I guess the best description of yesterday would be to say that it was action packed. First off, I will not lie. It was somewhat nice to have the Dunganlets back in school. We had all reached the point of stir craziness and it was time for us to gain back some sense of normalcy. However, just as quickly as I say that, change was ushered in. It would turn out to be a day of twists and turns for Sydney. The first came in the form of a phone call to Lynley. It was the school nurse. Apparently, while Sydney was stepping down from taking a sip of water at the water fountain, she fell. Thankfully, all of her bones where whole. Unfortunately, all of her teeth were not. Sydney chipped off the corner of one of her brand new adult front teeth. The nurse commented that at least it now matched the other front tooth that had not quite come in all the way. This did not offer us a lot of comfort so I made my way over to the school. When I got there I found her ecstatic to see me. It was as if the incident had been completely washed from her mind. In fact, I had to remind her that her tooth had been broken so that she would show it to me. I am happy to report that it does not appear to be serious but only time will tell. As you know, we know have quite a bit of experience with broken teeth. At the very least she will need some cosmetic dentistry - at the most, a brand new tooth. I snapped a picture a few moments after a picked her up to send to Lynley. This is what I saw.

As you can tell from the picture the corner of the tooth on the left has been chipped away.

This was only the beginning of Sydney's day of change. The next stop was at Cook's where she would be fitted for her brand new hearing aids. Thankfully this was a planned event. Sydney's new hearing aids are quite the fashion statement. When she and Lynley picked them out, mom had some say so in what they would look like. She selected some "blond" colored hearing aids to blend in behind her ears. This suited Sydney just fine, as this was the closest color to yellow available. What Lynley did not have any say so in was the color of the ear molds themselves. Sydney picked these and for some reason she selected a swirl of yellow, orange, and red. For some reason my dear wife succumbed to Sydney's wishes. Before seeing them first hand, I could only imagine that it would look wild in her ears. I could not envision subtlety. For the record, I was right. It will take some time to get used to. When I catch them out of the corner of my eye I always feel me heart skip a beat. It kind of looks like there is blood coming our of her ears. The good thing is that Sydney loves them. No matter, Lynley is already scrounging dimes and quarters and raiding my wallet to raise the funds to have 2 new $113.00 molds made.

So, as you can see, what started out as a relaxing trip back to normalcy ended up being the complete opposite. I started the day with a healthy beautiful little girl and ended up with one that had a broken tooth and, from the right angle, blood coming from her ears. I guess the only way I am ever going to achieve normalcy for my family is to accept the abnormal as our normal. Somehow that makes sense for the Dungan five.

And my purpose has known that for a long time.

5:14 AM 11/28/2007

As I explained to Lynley on the way home, there is good news and bad news. Which would you like first? Since custom seems to lean towards getting the bad news first we shall start there. It seems that Sydney's broken tooth can not be repaired until she is much, much older. The location of the chipped tooth is situated right in her bite. If they repaired the tooth at this point it would simply chip off just as quickly as it could be put back on. We are hopeful as more of her adult teeth come in this reality will change. Eventually, once all of her adult teeth are in her bite will move and we will be able to repair the tooth with out nearly as much risk of it being chipped off.

The good news is that the chip did not get past the enamel of the tooth. For all practical purposes this tooth is just as good as new. There are no cracks and the tooth appears to be just fine. Well fine and goofy. Sydney has a perfectly healthy chipped tooth and it looks like both her and her tooth will survive this fall. With her chipped tooth and red and yellow swirl ear molds she is quite the picture. Throw in the facts that she likes to take the bows out of her hair just as soon as she is out of her mother's reach and that she seems to hit her shirt as often as she hits her mouth while eating; you start to get a fuller picture of what we end up with at the end of the day. For someone that is so adorably cute she is making every attempt to look like Oliver (from the musical) by the end of the day. It seems as though I drop off a princess and pick up a pauper.

Everybody else in the family seems to be doing just fine. Graham is about as graceful as Sydney. Ainsley, on the other hand, could walk the tight rope blind-folded as long as she got to pester her brother when she got to the other side. I am amazed at her grace. She is two and carries herself better than her mother or I. It is all give and take however. She is also sneakier than her mother and I combined and I have learned to never put anything past her. In the end I have the urchin, the kind hearted sole, and the sneaky twerp. It is a mad and diabolical combination.

I am hopeful that we will have the rest of the week without any incidents and some time to achieve some normalcy. Next Monday marks the beginning of our hell week. On Monday we will be redoing Sydney's marrows and with our recent history this once again falls into waiting for a life or death phone call. I can avoid thinking about it for now. I have time to enjoy my family. But when it is here a have a sneaking suspicion that I will not be able to think of anything else, let alone breathe.

With hope, purpose, and a moment to relax.

5:28 AM 11/29/2007

Good morning! I am ecstatic to report that we made it through an entire day without a minor medical catastrophe. Yes, you heard me. Yesterday, no one in our family had a doctor's appointment. A Holiday Miracle? It sure seems so but I am holding out any official declarations until next Monday. I certainly don't want to use my Christmas miracles up too early especially considering the tests looming on the horizon. It is all fine and dandy to joke about what a pain in the behind all of this little medical nonsense has been. I understand how lucky we are right now. I know what real medical nonsense feels like. This is fun to complain about and make fun of but don't think for one second that I am complaining. I make light of this stuff because, in the big scheme of things, this is nothing. It is an inconvenience. It is like swatting an annoying fly.

I say all of this because we are getting back to the time to get serious. Both Lynley and I have begun to notice the change. We are sensing our inner fears rising to the surface. It amazes me that after all of this time we have not gotten better at dealing with the emotional impact of the worry. Then again, I don't know necessarily that it can ever be "easier" to fold your hands and quietly wait to hear if your child is going to continue to live carefree or whether we will receive news that she is facing the end of her life. At the end of next week will Sydney be playing with her friends at school or will she be laying in a hospital bed receiving chemo? At the end of the year will we she be in the ballet recital or fighting for her life in the bone marrow unit after an allogenic transplant? Will she see her 7th birthday? As a parent you just can't stop wondering.

It literally feels like I am just a few days away from gambling my family away. We are going to sit at the table, bet our lives and leverage everything, lay down our cards, and wait to see if the dealer beats us. It is an unkind feeling. I think I am more worried about this series of tests than I have been in a long time. I don't know that it is a rational fear. I think my emotional investment is probably due to the fact that we are entering an unknown. This isn't normal. There is a great unknown and even though it sounds unlikely that a secondary cancer will be found it still scares me. It is that simple. I fear the unknown. I fear the change. I am out of practice.

I guess I just need to get back to letting my purpose guide me.

5:51 AM 11/30/2007

Good morning! Not a lot has changed since yesterday. Lynley and I are quickly succumbing to our worry warts and are now almost completely covered. I know it will be much worse next week but hey, this is what we are stuck with. Sydney is not making it one bit easier. Yesterday she went to the school nurse complaining of arm pain. The nurse called Lynley to ensure that it was okay to give her some Tylenol and gave her a pretty good dose of worry. She immediately called me. It was not as though we were going to do something. She just needed someone to hypothesize with. The day before Sydney had complained about the same thing to me, however, the story was a bit different. The nurse said it was only her left arm. Sydney had told me that her condition was bilateral. Well, okay, she didn't say "bilateral," she said she had arm owies on both sides but that really isn't the point. The point is that she had pain on both sides and she had complained that it was in her joints, under her armpits and in her elbow - well - pits. I was actually pleased that it was on both sides. Although I realize cancer can make your joints ache I am always more scared of pain in a single spot. To me, that always screams tumor. Regardless, we had differing stories and we would have to wait until the end of school to get to the bottom of it.

After school I picked up Sydney as usual. I decided not to lead her in any direction and, therefore, did not bring up the arm incident. I figured that if it was that big of an issue she would bring it up. After 10 minutes of discussion she did finally bring it up. She described that her arms (arms, did you see that?) hurt and that she couldn't play some game. As her story went on I became intrigued by the fact that it started in the past tense and was changing to the present tense. As she talked, the description became more intense and animated. As I asked her to describe it she described it as bilateral and in the same places as the day before. However, she was really starting to get into it now. There were dramatics and screams. She was clearly trying to convince me she was in pain. As I drove and showed interest it got worse and worse. As we neared Graham and Ainsley's school I changed the subject. We got out of the car and I decided to test my theory. I started skipping with her holding her hand and swing my arms wildly. I spun her in circles. I did everything I could to stress her arms and joints without her knowing. All she did was laugh and have a good time. It was the most amazing transformation I have ever seen. Either she was faking it, making it worse than it really was, or she had a miraculous recovery but I am leaning towards one of the former.

Regardless of all of this nonsense, I still don't like it. I don't like it at all. I am just hoping for a fun weekend that we can all enjoy. On Monday we are back at the hospital.

She might be faking it but I am not. Come on purpose. Let's get through this.

Monday, October 1, 2007

October 2007 Posts

6:04 AM 10/1/2007

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

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

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

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

Human Poo is still kryptonite to SuperDad.

Purpose, give me strength.

6:09 AM 10/2/2007

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

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

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

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

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

5:52 AM 10/03/2007

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

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

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

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

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

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

6:28 AM 10/4/2007

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

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

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

5:43 AM 10/5/2007

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

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

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

This is purpose.

5:12 AM 10/10/2007

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

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

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

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

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

You make your Daddy smile -

My purpii.

4:32 AM 10/11/2007

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

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

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

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

My dear friends. I am so terribly sorry.

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

My purpose feels strangely weak and inadequate today.

3:57 AM 10/12/2007

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

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

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

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

All in a life's work I guess.

My purpose is busy. It is time to focus.

6:39 AM 10/15/2007

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

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

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

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

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

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

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

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

Another example of purpose in action.

5:57 AM 10/16/2007

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

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

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

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

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

Yesterday was a good day for our fight against neuroblastoma.

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

5:03 AM 10/17/2007

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

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

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

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

Does this qualify as purpose?

4:52 AM 10/18/2007

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

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

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

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

Purpose, take me away.

5:29 AM 10/22/2007

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

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

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

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

Ouch, my purpose hurts.

2:53 AM 10/23/2007

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

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

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

We need recipes for the following sections:


Salads and Dressings

Soups and Sandwiches


Side dishes


Kid Friendly Recipes

Celebrity Recipes

Recipes need to include the following information:




List of ingredients


Your name

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

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

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

Apparently cooking can be purpose too.

5:14 AM 10/24/2007

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

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

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

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

It is a deep breath of purpose.

3:40 AM 10/25/2007

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

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

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

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

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

There is purpose in Australia too.

4:30 AM 10/26/2007

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

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

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

Off to purpose.

5:41 AM 10/29/2007

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

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

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

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

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

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

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

Purpose comes in all different flavors.

5:23 AM 10/30/2007

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

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

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

I can still shout purpose.

5:26 AM 10/31/2007

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

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

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

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