Dad's Diary

The Beginning June 21, 2003 - August 31, 2003 Diagnosis, Induction, Stem Cell Collection	Induction Sept. 1, 2003 - Nov. 30, 2003 Induction, Surgery	Transplant Dec. 1, 2003 - Feb. 28, 2004 Transplant, Radiation
Antibodies (CH14.18) Mar. 1, 2004 - June 30, 2004 ANBL0032, Accutane, CH14.18	More Antibodies (CH14.18) July 1, 2004 - Sep. 30, 2004 ANBL0032, Accutane, CH14.18	Relapse? Oct. 1, 2004 - Dec. 31, 2004 Relapse, chemotherapy
Antibodies (3F8) Year 1 January 1, 2005 - December 31, 2005 Sloan Kettering, 3F8, Radiation	Antibodies (3F8) Year 2 January 1, 2006 - June 30, 2007 Sloan Kettering, 3F8	Remission July 1, 2007 - Current Looking for answers

Hello and welcome to my diary. I think I should probably offer a disclaimer to those of you who do not know me very well. I am irreverent, sometimes egotistical and most definitely sarcastic but ultimately I am a normal average human being. I have three purposes for this diary. First, this is therapeutic for me. It allows me to get out my feelings and deal with my own pain. As a result, I am better prepared to care for Sydney, to care for my wife and to care for my family. Secondly, as a parent of a child with cancer it is my hope that this may help other parents in the same situation. I know that I am searching for the “right” way to feel and I am beginning to understand that there is no such thing. For you other parents I hope you find some comfort in my words and feelings knowing that there is someone out there that feels the way you do. Lastly, this is my gift to Sydney on her eighteenth birthday.

I will write how I feel and what I think. It won’t be appropriate or polished and definitely not politically correct. I have no intention of swaying opinions or influencing people. It is my words and how I feel. It might make you happy. It might make you sad. Knowing me, it might even make you mad. But it will make me feel better and hopefully it will give me the strength to deal with my own pain.

At this point I really don’t want to discuss this diary. I don’t want to know that you are reading it. It is still a little too personal and close. So please do not talk to me about it but if it makes you feel better then I am glad.

Well, here I sit on a plane in Lubbock, Texas of all places. It seems some thunderstorms have sent us on a little adventure. Although I miss Lynley and the kids this is okay, too. I needed the time to decompress. The last 4 days have been incredible and I really don't even know where to begin. It was one of the most meaningful experiences thus far in our journey. It was also a bit different this time. Okay, it was a lot different. But, the difference was more with me than with anything else. Now, when I go to these conferences it is far less about learning new things about neuroblastoma and far more about seeing old friends and meeting a few new ones. Neuroblastoma sure seems to bring together a group of incredible people.

I don't want to mislead. The conference was jam packed with information. In fact, I had some concerns that the information might be too technical. I thought we may have gone over the top but it did not take too many interviews before I realized that it was an appropriate level for most. I can tell you that the questions were far more sophisticated and I was extremely happy to see some issues finally come to light. One of my favorite presentations was Dr. Reynolds examination on "How to interpret data?" I must admit that I learned quite a bit and with his information I will be far more qualified to analyze data from various research projects with much more conference in the future. He shed light on some of the problems in the research world. Most importantly, I have learned how to discern the difference between data that is qualitative and meaningful and that which needs to be scrutinized more carefully. Personally, it was my favorite presentation but, keep in mind, I had already seen most of the others at another time and place.

In going into this conference we really made an effort to ensure parents received an unbiased view of all of their options. The trick was that we needed to bring the issues to light without being antagonistic. There were several of us that kept a pretty steady flow of questions to ensure that we could bring to light as many of these issues as possible. There aren't absolute answers to 90% of the issues that we discuss in neuroblastoma. However, to be effective advocates for our children we need to be aware of both sides of the decisions that lie before us. I can't tell you how many times I am asked if I think whether course of action "a" or "b" would be better for a child. I always answer with "Which side do you want me to be on because I can argue either side?" There aren't any absolute answers but, in the same sense, if you know the facts, there often aren't any wrong ones either.

I spent hours discussing many issues outside of the confines of the conference hall doors (Yes, it appears there may have been a bar close by) and it was in these discussions that I really learned the most. I spent hours talking to many of the researchers. While at a neuroblastoma conference, I generally don't talk to the researchers about Sydney other than to say that she is fine, when the ask. At most of the conferences that I attend this type of discussion would always be inappropriate. However, at this conference, the parents' conference, it is fair game. At about 2:00 AM on Thursday night I found myself in a deep discussion with Dr. Reynolds about Sydney and what I envisioned for her future. He gave me the opportunity to lay out my arguments and to reveal my plan of action. We discussed the various benefits and risks involved. We discussed many issues but, ultimately, I wanted his opinion as to whether my plan was reasonable. Did it make sense? Was this what he would consider for his child? Like me, he had some perfect world preferences (my plan A) but we both had to operate in the world in which we live. And so, plan B, the one I discussed last week in my diary was put into motion. I can't say that my decision is right for any other child but I can say with some level of assurance that it is reasonable for Sydney and, most likely, in her best interest.

It appears that I could make a pretty good case to put Sydney on a modified schedule of Accutane. I was glad to hear that Dr. Reynolds felt that my schedule of 14 days on/42 days (or more) off would accomplish what I wanted. Additionally, the reasoning behind my dosing schedule and my argument for a retinoid "tune-up" holds water. This is not a long term decision for Sydney but an acceptable option until plan A becomes available. I could have argued for plan A right now. I could beg and plead and whine for plan A but I honestly believe that doing plan B first may, in effect, enhance plan A.

Well, I am finally back up in the air and on my way back home and judging from the dark clouds before us it is time to get ready to land.

This is just a quick update to let everyone know that we are okay. Graham came home from school with a 103.4 degree fever yesterday morning and it has been chaos ever since. Thankfully the doctor thinks we are just battling something viral. He seems to be okay. In fact, today he is at home with me and happily playing and watching television. He seems perfectly fine and then we will be surprised by some diarrhea or another fever. I am hoping he will just rest and allow his body to recover.

There is still a mountain of things to discuss regarding the last couple of weeks but I find myself running again this morning. Perhaps, tomorrow.

Well, this is a different way to start a diary entry but I jut could not help myself. Yes, for the second year in a row the Dungan twerps won the "Most Patriotic" award at the local Fourth of July parade. A daddy can only be so proud. Of course, I have to be honest that I wasn't so supportive when I was outside at 7:00 AM on a holiday cutting and taping individual strips of paper streamers to the bottom of their Escalade. None the less, it made for a moment of pride as we accepted our prize, a dinner for three at a local eatery. It wasn't all roses however, midway through the parade route (a loop around the park) Sydney somehow became gas pedal incompetent and I had to push them up hill the last leg of the loop. It wasn't until later when Graham was driving that I discovered that the Escalade was perfectly fine and that I had pushed it around for nothing. Regardless, we had a good time and it made for a great holiday morning.

Believe it or not I am still recovering from last week. The funny thing is that Pat is really the one that does all of the work. I pretty much just stand around and socialize. I would say that I am the beauty and she is the brains but everyone pretty much knows that I would not qualify for either one of those titles. Pat simply does incredible work putting on the conference and she does it so well that everyone has time to do what they came to do in the first place - meet other families, talk to the experts, and learn about neuroblastoma.

Some of the most interesting things to come out of the conference were actually unplanned. Although the speakers did an excellent job of presenting all that there is about neuroblastoma, there were some important "facts" that came to light. One of the most interesting was a debate over the survival curves presented by Sloan Kettering as opposed to the rest of the COG. At first we were all led to believe that Sloan enjoyed a 60% survival rate whereas as the COG only provided a 40%+ rate of survival. These statistics have been debated for years. I must admit, although I should have known better, I felt a little duped by these statistics. As it turns out, these two statistics that everyone tries to compare aren't actually the same. In fact they are entirely different. The results of the MSKCC's experience was not exactly comparable with the COG information as MSKCC reported Progression Free Survival vs. Event Free Survival.

Progression Free Survival (MSKCC) - showed only those patients who did not have progressed NB. If, for example, a patient had significant liver, kidney or other toxicities, they were not represented in the MSKCC number (an event does not always equal progression of NB disease)... and thus, the number could be deemed a bit "optimistic" if you will - thus the 60% vs. the 40% or so (note, I am pulling that from my head... not referencing any slides) reported by COG for Stage 4, N-myc amplified did not tell the whole story.

Event Free Survival (COG) - showed all patients enrolled... as any toxicity which would result in pulling a child from a protocol would be considered an event and thus the results would be lower.

In the end I don't really know that there is any difference between the Sloan survival curves and that of the rest of the COG. By the time that you factor in all of the variables that make the two statistics different I think you might find them to be eerily similar. As always it just is not clear. There is no absolute answer. We, as parents, just have to make our best decisions and hope for the best.

Today my blushing bride adds another sparkly to her tutu. Yes, Lynley's birthday is today. I won't tell you how old she is because I am quite sure that would get me into some severe trouble. Let's just say that she must be the age of fine wine. Is that safe? Anyway, we will have to find something fun for all of us to do. I think she probably just wants a break for her birthday. Unfortunately, around the homefront we will be focusing on Ainsley today. The little bundle of twerptitude came home yesterday morning with a fever around 103 degrees. It took a while for her fever to respond to Tylenol but she seemed to tolerate this virus pretty well. At first glance it appears to be the very same virus that struck Graham earlier in the week.

Things for me are going well although busy as usual. Today I am working on getting some flight arrangements to New York for Monday to meet with a group of parents about humanizing the 3F8. I sure wish they would give us a little more notice about these meetings. Regardless, it ought to be very interesting. Right now I am planning on flying in on Monday morning and out on Tuesday morning. This project to Humanize the 3F8 has really taken off. There are many families interested in the process. It sure seems to hold a lot of hope for many. I have written about some of the benefits before. There are just many, many more questions left to ask.

Well, I had best be off. As usual there is a lot to be done and with Ainsley at home sick there will be fewer hours to do it in.

So, it is 2:00 AM and I just arrived at my hotel room in New York. Talk about a whirlwind tour. With a delayed flight and a switch in airports I have finally made it to my bed. I can't tell you a whole lot because I must get to bed before the start of a full day of meetings tomorrow. But, what I can tell you is that the Dungan Five had a spectacular weekend together. We swam in the pool and played most of the time but, as usual, Lynley had enough chores laid out for us snotty nosed little brats to remind us where we ranked in the household. I was hoping when she would slow down in her old age but, apparently, I was quite clearly wrong.

Tomorrow will be a very interesting day. I have several meetings on a myriad of subjects. The day will begin with some impromptu meetings with a few families up at Sloan. Then, of course, I will have to deliver pictures and presents to some of Sydney's favorite nurses. Then, at 11:00 AM, I have a meeting with Nai-Kong Cheung himself. I have really prepared myself well for this meeting and I am really looking forward to it. Hopefully this will give me a keener insight into his vision of a humanized 3F8 and, quite frankly, I am also interested in pushing the envelope a bit on the 8H9. I know, I know I am throwing a lot of acronyms at you but bear with me. You know that when I have enough time I will go through all of the grueling details and you will wish I had never opened my mouth. Let's just say that the first is a helpful utility, a modernized weapon against neuroblastoma. The latter has the potential, for many reasons, to be something very, very special. If it proves itself as well with systemic disease as well as it did in central nervous system relapses in sustaining remissions then we may very well be preventing relapses for longer than ever before. Some have even used the "c" word (cure), although, I think everyone is still very gun shy about saying it out loud. For good reason. There is a long way to go but it is certainly one of the more promising revelations that I have heard this year.

Anyway, after that I will be having lunch with another NB parent who is one of the key players of the Parent's NB Handbook and we are going to see what we can to keep that moving along and into parents hands everywhere. The remainder of the afternoon will be spent talking to another family who is making some tough decisions, a group interested in Lunch for Life, and finally a large parents meeting to discuss the possibility of funding the humanized antibody. After that I am sure there will be discussions into the wee hours and then it will be back to my hotel for a few hours of sleep before I am up at 4:00 AM to catch a flight home. Yes, it is a whirl wind.

Well, well, well. Here I find myself on another flight back home. This trip has been one sleepless adventure and I don't remember ever being so tired. I am sure I had much more sleep deprived times in the hospital with Sydney and I guess I am just out of practice. Regardless, I have reached the limit on my ability to function - at least rationally. I had an incredible time. It was a jam packed adventure but I am anxious to get home and be with my family. Lynley has grounded me from travel any time soon and that suits me just fine. I am simply not made out for this jet set life. The only problem with this plan is that I will be heading out of town in just three short weeks for a CNCF board meeting. Quite frankly, if I wanted to (which I don't and I will not), there are places I could be every week for the rest of this year. As important as I know many of these trips are, I don't want to be away from my family. I miss my wife, my kids, and my normal average chaos around the house. Life is hard when you don't have a wife around to tell you what to do. That life is sleep deprived enough without all of this jet setting.

So, why did I make this trip. Well, it was important. I had to get up to speed on many of the issues on this project of humanizing the 3F8 antibody and I had to do it quickly. Honestly, I came into this a bit skeptical but, after hours of meeting and studying, I am pretty firmly on board with the idea. Research has been kind of funny the more that I have gotten involved and learned about the process. I have always fallen in love with whomever I talked with last but have learned that there is always more to the story. In this case, it is a subject that I know a fair amount about - antibodies. Given this experience, I went in with a pretty clear picture of what to ask. I can already envision and understand both sides of the coin and can make most of the arguments for myself. I know I still received a fairly biased point of view from Sloan but since I understand both sides I am able to strip away the bias and make a decision for myself. I think this is one reason why some families at Sloan are skeptical of me. I don't just believe in Sloan or the antibody itself. I also believe in the COG, the NANT, and a myriad of investigators from all over the world. Kids survive with all kinds of therapies from all kinds of institutions, being cared for by all kinds of different researchers. I agree that some places are better than others but there is no absolute answer and all of the "good" science does not happen at a single institution. With that being said, I can tell you that I am firmly behind this vision at Sloan and I think it is an important endeavor. I believe it will be one of several things that will impact our kids lives (kids of the NB world) and, for that reason, it is something I am willing to commit myself to supporting. However, it will not be the only great project that I will support and see through fruition this year. There are other great things happening that are likely to have as important of an impact.

So, why is this important? What in the H - E double hockey sticks am I talking about. Why I do I think humanizing this antibody is important? Don't we already have one? Why do we need it? As I have said before, the 3F8 is a murine (mostly mouse, about 75%) antibody. Because of this it has some theoretical advantages but the point is that it is a relatively old antibody with 20 years of experience. We know that 3F8 effectively kills neuroblastoma cells in kids and we also have a pretty good indication that it does it pretty effectively. The belief at Sloan is that it does it better than any of the other antibodies because it stays attached to the neuroblastoma cell for longer than the other antibodies. This is called the "come off" rate. You may remember me saying that that the humanized and chimeric antibodies live longer in kids than the 3F8. In other words, when kids are being injected with antibodies they stay alive and active within the kids bodies longer than 3F8 does. You might think this would be better. Ordinarily it would be but, the issue is more complex. It also depends on the stickiness of the antibody to the NB cell. Although the 3F8 may not live as long in the human body as the other antibodies, Sloan believes that it stays attached to the NB cell for much longer. This "stickiness" to the NB cell is what allows the immune system, those killer cells, to organize and kill the neuroblastoma cell. Basically, it stays attached to the NB cell long enough to kill it. Is this data published? No, of course I asked. But this is Sloan's reasoning for why they like their antibody better.

Given these "facts" why wouldn't everybody use 3F8 and keep taking the antibody indefinitely? Well, the 3F8 also has some problems. It is mostly mouse, remember, and the problem is that our human bodies become "allergic" to it more quickly and then our bodies develop our own antibody to mount a defense against it. Our bodies eventually start to kill the 3F8 faster and faster until it is virtually useless. This is the HAMA (Human Anti Mouse Antibody) response that I have talked about so often. So, even though a child could be benefiting from the treatment they can no longer have the antibody because it will cease doing any good. It will be killed before it can do its job on the NB cell. We had an effective treatment but we can no longer use it because it is too, well, mousy. This begs the question. How do we prevent this HAMA?

Well, first off they do it initially by taking advantage of the suppressed immune systems of these kiddos. These are the suppressed immune systems that we have achieved through the massive amounts of chemo they have endured during induction and sometimes transplant. So, yes, massive amounts of chemo will do it. However, that isn't a really great idea for these kids to give them more massive amounts of chemo once they have HAMA'd. That would come with significant risks and toxicities. What else can we do? And, this is where humanizing the antibody comes in. We make it more and more human so the body won't be as likely to develop a HAMA. We engineer the antibody so that the body will like it more. We replace parts of it with human parts while trying to leave the parts that make it so sticky. This is the process of humanizing the antibody. This has several advantages. Now we can potentially give the antibody to kids who would have HAMA'd early on. I have often said that it is my belief that we need long term continuous exposure to the antibody to work best. Humanizing the antibody will ensure that kids can receive enough exposure to the antibody without developing an antibody response such as the HAMA. Another benefit of humanizing the antibody is for kids who are not significantly immunosuppressed but heavily pretreated. They no longer require these high dose preparatory regimens of chemo to prepare them for antibody therapy. This goes beyond just preparation to prevent a HAMA. Ultimately it helps reduce the toxicity of treatment because children no longer need as much chemo to continue fighting this disease. They have more energy to fight. Kids could be treated for years without any chemotherapy. This will help the children that have relapsed maintain disease control for longer time periods. Their bodies will not wear out as quickly. Sloan states (and I know of examples) that they are maintaining disease control for longer and longer and patients are now surviving up to 10 years after relapse. This means time, which we can use to search for cures for these kids. In my opinion, no, this antibody is not the cure for cancer. But, it is a key player in buying time until the silver bullet can be found. Thankfully there are many promising therapies on the horizon we just need more time.

But aside from the reasons mentioned above there are many other benefits to humanizing this antibody. Much of which can't be readily seen by an amateur antibody lover such as myself can still be explained. And, I did get a glimpse into some of the possibilities. For instance, by genetically engineering this antibody from the ground up we now have the opportunity to muck with other aspects of the antibody. For instance, We can add elements to make it live longer. We can even make the other side of the antibody sexier. In this way, it will be more attractive to all of those big manly killer cells that we want be attracted to kill the NB cell. Humanizing it also makes it easier for us to "grow up" the antibody in hamster choke(?) cells. This means we can grow the antibody in larger volumes. This helps deal with some of the current drug supply issues. See, there are many good reasons for this antibody and it isn't just what we see on the surface. This is the body of theoretical, anecdotal, and belief in what Dr. Cheung is telling the truth that makes me believe in this project. I have to put my finger on what I know and makes sense and make a decision. In this world, you have to pick and choose who you are going to believe in and I can say that Dr. Cheung is one (of several) of the researchers that I believe in.

I have a rule for that. We share purpose!

Yesterday was a great day. It won't shock you to know that it was also busy. At about 7:30 I left to take the kids to school. This trip was a bit different. This time I only dropped off two. Yesterday, Sydney would spend the entire day with me. She and I along with several other families were participating in a video shoot for the CNCF. The shoot was at Children's Medical Center of Dallas and we were supposed to spend the better part of two days on this adventure. By the time we arrived the shoot had already began. There was already a crew of about 7 making their ways through the halls at the clinic. The first few shots were mostly laboratory in nature but it was not long before our child stars took the stage. First was Alaina who was demonstrating our favorite pastime (sarcasm), life in the infusion room. She was a great actor and it was not long before she had them eating out of their hands. She was the perfect little lady and quite patient with all of the people scrambling around her. The next few shots were a little less medical but none the less part of our daily lives. Grayson, who was just days out of the ICU and his second of two transplants, was filmed while he played quietly on the couch. Sydney's shot was next and she was filmed doing one of the things that she does best, running into her Daddy's arms. After this, Sydney and I made our way outside to the playground while everyone spent time setting up the next shot. It was not long before we were on our way upstairs and waiting for Dr. Podeszwa. Unfortunately, he was busy with patients and we elected to opt for an early lunch before shooting the next scene.

The afternoon at the hospital would go very quickly. David nailed his complicated lines - "I believe we can bring change." and within minutes we were scurrying off to our next location. The next shot was one of the most surprising that, had we planned it, there would have been no chance to pull it off. However, Elexa just happened to be scheduled for an MIBG scan at that very moment. As she was being anesthetized we squished in another shot of some MRI films and by the time we had that wrapped up it was time for the crew to go back to shoot Alexa. Sydney and I elected to make another visit to the playground where we found Alaina and her mom. Sydney and Alaina had a wonderful time playing together and before we new it, it was time to get back to work.

I really can't tell you how smoothly this shoot went. Here it was half way through day 1 and we had already completed all of our hospital scenes. As a result, we decided to head over to the Podeszwa's to shoot some of our day 2 scenes. There we saw all of the Podeszwa's committed to film. It was quite fun and the kids had a spectacular time. This session went quite quickly as well and by about 5:00 PM we had wrapped up shooting, not only for the day, but in its entirety. It was an incredibly successful shoot and the only thing that I was truly less than successful at was getting Sydney to leave. I honestly don't remember the last time she had so much fun. In the end we decided to stay for dinner and ice cream and then at about 8:00 PM we decided to make our way back home. By then Sydney was asleep. I gently carried her upstairs, put her into her jammies, and kissed her forehead good night.

Good Morning! I am finally starting to recover and it is nice. Yesterday was the first day in as long as I can remember which was not jam packed with meetings and rushing from one place to another. The kids were all back in school and life was once again back to a state of normalcy. It was a typical day. It was perfect. I worked most of the day from home and picked up the kids from school as usual. It was completely mundane. We went from the school to the bank and from the bank to the grocery store. After some serious domestic errand running we made our way home. For the next few hours we spent our time playing in the pool. The kiddos had a great time. I am amazed at how well Graham and Sydney are swimming. Sydney has gone from a fledgling doggy paddler to diving for rings in the bottom of the pool in just a few short months. Graham on the other hand is still kept a float by a buoyant bathing suit but is showing all of the signs of being able to swim on his own. He is quite comfortable scooting across the top of the water with his goggles and snorkel. He has no fear of stopping to dive down into the water and loves to be tossed through the air. Ainsley on the other hand is becoming more and more comfortable with the water everyday but is still a bit anxious and chooses to hang on to the side of the pool or on one of us. Regardless, we had a great time in the pool.

I neglected to mention that Sydney went to the clinic early on Tuesday morning. She was due for her quarterly bloodletting for the vaccine trial. As a side note Lynley mentioned to one of the doctors there that I was interested in putting Sydney back on Accutane on a modified schedule. The next thing I knew we had our iPledge booklet and a script for our first 14 day round of Accutane. I really wish they had put up at least a little fight but I think we all have a pretty clear picture of what we are dealing with. Regardless, we will be starting her on it again pretty soon. I have to brush up on all of my Accutane administration notes - let's see, Aquafor on the cheeks, vitamin E oil on the lips, what blood tests did I need again. Oh well, it will come back to me soon enough.

Paul Saxon has earned his angel wings. I think everyone that knows Sydney certainly knows of Paul and his family. They were a fixture in our lives from nearly the very moment of Sydney's diagnosis. In fact it was Terrill, Paul's dad, who was the first person I had ever met that had a child with neuroblastoma. At the time, they were a huge source of hope for our family. It was Terrill that explained to me in those first few weeks after diagnosis that life would never be normal again but that our lives would take on a new normal. He told me that we would be okay. That we would make it through. It was that support and those words that gave me the strength to plug on and to care for my family. Much came from that first conversation up on the floor of Cook's and they are memories that will last with me forever.

Paul truly touched us. We did not see a lot of he and his family but they always felt particularly close. And, on those occasions when we did see him, he always made a lasting impression. We remembered all of his milestones because they were always a sign of great hope and happiness for our family. It wasn't long into Sydney's diagnosis that Paul had his break out party from stem cell transplant. I remember him dawning the doors almost in shock from all of the faces gathered around him. As I stood in the background along the wall in the oncology unit it gave me great comfort. Here he was standing, renewed and pure. With everything we were going through we could make it. It was possible to come out of this nightmare beautiful and whole. "Beautiful and whole" that is how he made me feel that day.

There were many other times that we crossed paths on our journey. I remember vividly meeting them up in the entry way at Cook's the night before they took their Lunch for Life dream vacation to Walt Disney World. He was so giddy - standing there with his brother. I still remember the trip to Toys R' Us to pick out the movies and toys for his trip and if you gave me a moment I could tell you what each and every one of them were. I am still sorry that I could not find more Teenage Mutant Ninja Turtle movies. I also recall seeing him on countless occasions in and out of the clinic. I clearly remember being so incredibly impressed by his skills as an artist. To this day I have never seen someone so keen with a pencil as this little boy. Visions of his life like drawings of dolphins swim through my head as though they were real. Believe it or not, I will even watch NASCAR (and secretly enjoy it) because of this little boy. It is not that I like car racing but because it brought so much joy to this little boy and his family. And, to this day, every time that I walk through Cook's, I have been prone to lose change in various places around the hospital just in hopes that Paul would find it. That was one of his favorite pastimes and one that I remember from being a little boy myself. Yes, in a strange way, Paul is a part of our family, part of who we are.

Much of our love for Paul came through my relationship with his father. I can't tell you how many times he and I chatted over the phone or via email. We were always looking for a cure - the next idea. Although Sydney and Paul were never parallel in treatment, Terrill and I always found time to bounce ideas off of each other. I just wish I could have found the answer for them. In some ways this feels like my own failure. I wanted so badly to have the right answers for them but I just did not have them. It is kids like Paul and their memory that keeps me motivated everyday to work harder and faster to find the answers.

I can't make sense of this. Heck, it never does. But, what I can tell you is that Paul will live on in my heart. He will be a constant companion and a constant reminder of what is important in life. He will remind me to stay diligent so that we can help as many kids as we can. One day we will find a cure for this disease and we will find it faster because of him. It is kids like this that remind us of what is important.

Today Lynley and I will be traveling to Waco for Paul's funeral. It is a bit of a drive but one we would not miss for the world. For Sydney, Graham, and Ainsley it will be a normal day of school. The kids are doing well although Sydney continues to look like she has been through the torture chamber. I am continually amazed by the battle scars and bug bites that appear on her body on a daily basis. She is literally covered from head to toe. It does not seem to matter how much or what kind of bug spray that we put on her but she is always covered in bites. She must be quite the delicacy for a mosquito. Avon Skin So Soft seems to work the best at keeping the mosquitoes at bay but nothing seems to have the permanence that she needs. The scary part is the she has a small bump on her head. It is about the size of a bug bite, much smaller than a dime, but we aren't quite sure what it is. That is always an alarming thing for a parent of a child that has neuroblastoma. Tumor's can often form on the skull. This, we are hoping, is much too small and much too like a bug bite. However, in light of all of the bad news we have had lately we just can never be sure. For the time being we are just going to pray that it is nothing and hopefully it will go away like the others eventually do.

Well I had best be off. A good portion of our day will be spent driving today and I need to get as much done as possible before. If you have never prayed for a bug bite before this might be a great time to try one out.

Yesterday was an incredibly emotional day. Paul's funeral service was incredible. I know that sounds strange but it really was beautiful. Nearly all of the men dawned Hawaiian shirts and the women were colorful as well. It was truly a celebration of his life. In some ways it was unlike any other funeral I have ever been to. Other than for introductions, the only speakers were Terrill and Leigh and they did an incredible job giving us insight into Paul, their journey, and what they learned from this amazing little boy. Being a father of a child with neuroblastoma I was amazed by Terrill's ability to share with the congregation. I can't imagine being anything but a puddle of mush much less standing in front of a group of hundreds to speak about the child I just lost. I would be a wreck and yet he did it with such calm dignity. I felt all of his words, some funny and other more serious, and once again I was left with a since of admiration for this family. Leigh took us through a bible verse and what it meant to her and their family. I have never watched someone with so much grace as she let us follow her through the words and story. Her reflection and insight were clear as day and it became more and more apparent what an incredible family this was. As you probably know of me by now, I believe in God, am comforted by religion , and believe in the power of prayer, but I am not a particularly religious person. This service gave me some insight that I had never seen before and Terrill and Leigh, once again, schooled me on the power of perspective and I walked away from another meeting with the Saxon's feeling enlightened and whole. It was a truly beautiful and touching ceremony and I am so glad that they took the opportunity to share with us. I know, it hardly seems like I am talking about a funeral. It truly was a celebration of life. I forgot who said it but it is true as day - there are too few Saxon's in this world.

As a side note to the service, I was delighted to see Dr. Giselle Sholler there. For those of you who don't know her, this is the oncologist from Vermont that took such good care of Paul when all of his options seemed to be gone. Paul participated on her Nifurtimox trial and she became a large part of his treatment and their lives. Giselle spoke with them often, especially during the last few weeks of Paul's life. It was touching to see her travel all of the way from Vermont to be there and it was a clear indication of her commitment to our kids and the bonds that we have with our children's oncologists. We are a very unique group of families, physicians, caregivers and friends and it is unlike anything I have ever experienced. For being brought together by something so evil it is amazing how incredibly beautiful our bonds are. We are a family.

I know many of you are waiting to hear an update on the mysterious bump on top of Sydney's head. Trust me, it has not left my mind either and I spent a pretty sleepless night thinking about it. In fact, I don't actually remember sleeping last night although I am quite certain that I did at some point. I spent the night tossing and turning and thinking about it. It is not clearly neuroblastoma. If it were you can bet that I would not be sitting here. It is close enough to a lump that it has us significantly scared. It is about the size of a dime. I believe it is larger than yesterday but Lynley thinks it is about the same. We have considered drawing a line around it but were wanting to spare Sydney the embarrassment of having a circle drawn on her head. Regardless, it is about the size of a dime. It is not itchy and it does not cause her pain. At this point it is more of a bump and less of a lump but still no good. The only saving grace is that the center of the bump has a bit of a different texture. A small area on top of the bump (about the side of a pencil eraser) has more of a scaly texture. The color is nearly the same as her scalp and it takes quite a bit of concentration to make out this area. This is really the only saving grace. In a way, it is this characteristic that shares its similarities with a bug bite. I just wish it were reddened or itchy - or both. In short, it is not clearly anything. It is small enough to be a bug bite but unlike one enough that it could be something more sinister. We will see what this morning holds and make more decisions from there but it would not surprise me if we ended up at Cook's today.

I slept completely and fully. You must know that it means that there weren't little neuroblastoma tumors dancing through my head. Sydney's bump on her head has almost completely resolved. In fact, it has cleared so well that I am not even sure that I can still detect it. It is a tremendous sense of relief. I have no qualms about telling you, I was scared out of my gourd. As the time was going on I was becoming more and more worried. I am still amazed that it resolved so quickly but I am completely thankful.

Good Morning! Two nights of fully rested sleep in a row. I can't tell you how great that feels. Last night we had the Robertson's over for dinner. I know, I know what you are thinking. What kind of nasty little moves did Truman put on Syndey. What type of juvenile love transpired? Well, believe it or not, last night's soap opera was much more about canine love. You see, the Robertson's are getting ready for yet another grandiose trip to Walt Disney World and Lynley thought it would be a good idea for us to take care of Cleo, their neurotic standard poodle. Last night was a walk through to make sure that Hogan, our idiotic Golden Retriever, and Cleo would get along. As you can probably tell I wasn't to excited about the idea but, heck, I am always up for a free dinner and that was the cost of my week of torture.

As it turns out Hogan took quite a liking to Cleo and they had a blast running around the yard. We were all amazed at Hogan's ability to keep his nose where it did not belong even at a full gallop. I know, disgusting! But still, very impressive! Other than a few missteps into the pool the dogs had a great time and much to my dismay it became quite clear that they would have a good time together over the next week.

The kids too had a blast. After dinner we all made our way back out onto the porch. The kids stripped down and made a beeline for the pool. For the next hour the parents sat around the pool and chatted while the kids played in the water. Sydney followed Truman around like a little puppy dog. It was almost as disgusting as the scene that we had viewed earlier - at least to me. It is clear that Sydney has not lost her fancy for Truman. Thankfully the boy has grown a bit older. He is too young to appreciate girls and too old to find much interest in someone a few years his junior. At least I had that going for me. Regardless, I still had to sit through and listen as she crooned "Truman" following him around the pool. It was an awful display of crushdom. Finally, however, the evening came to an end.

Oh joy, I had the opportunity to watch my dog sniff after one Robertson and my daughter salivate after another. Just think, I get to watch this behavior for the next week. At least, my daughter will be safe from Truman's lecherous non chalance.

Can a weekend be fun and scary? Well, I suppose if one can be then we had one. It all started early Saturday morning with Sydney waking up with hip pain. It is really hard to discern the cause and exactly what was going on. We both took our turns with her trying to get to the bottom of it. I wasn't present for Sydney's discussion with Lynley. I was busy doing some high powered cartoon watching with the other twerps. Lynley came away from the experience sufficiently scared. I watched Sydney pretty closely but I did my best to not let her know. What I noticed was that when we were paying attention to her hips seemed to be hurting much worse than when we weren't watching. She also seemed to come down with clearly life threatening bouts of pain every time our attention was focused on the other two for any long period of time. As the morning progressed she continued to complain of pain but at the same time I would catch her running and jumping through the house without any hint of pain. After watching this for an hour or two I finally pulled her aside and tried to get to the bottom of it. In hindsight, I probably should have let it go but, nonetheless, I just had to find out the answer. Regardless, I had a serious discussion with her. I explained that hip pain was very serious and we need to know the truth about exactly how much it hurt and where. I touched the top of her right hip where she had been grabbing earlier - no pain. I came about 2 inches lower and applied pressure - a minute amount of pressure. She screamed in pain. I knew this was a complete over reaction and led me to believe that she was faking it. I asked her if the other hip hurt and she said 'no.' It did not take long before I had her changing stories and the next time I touched the left leg she screamed in agony as well. She is a horrible over-actor but it still did not make me feel any better. In the end I never really got much out of her. It left me feeling no better and no worse. I still had no idea of whether she had pain or not and I had no idea of the intensity, the onset, or the location. I elected to not mention hip or stomach pain any more and just see what happened.

The day went on with very few mentions of pain and all were confined to the morning. We spent the day doing hard activities. We swam in the pool and rode our bikes around the block. These were hardly the activities of someone who was in pain from cancer boiling in the marrow of her hips or of someone whose hips were being eaten away. I began to feel better but I was still far from satisfied. To tell you how worried we were I elected to delay her start of Accutane because of the pain. First off, we have had enough courses of Accutane to know about the various aches and pains that can come along with that. Sydney's last few courses were full of scares. I wanted to ensure that we got to a satisfactory conclusion of what was going on with her hips before we had to consider Accutane as a source as well. Secondly, I also know that Accutane is antagonistic to chemotherapy and the last thing I wanted to do to her at a potential relapse is make her chemotherapy less effective. Yeah, I know, we are scaredy cats. Regardless, we made the decision and stuck to it. Saturday evening and all day Sunday brought us complete silence on the pain front but we had other surprises.

Yesterday afternoon Graham decided to fall off the diving board. He was not following the rules and he was being a certifiable "kid". Although he knew better, he was dancing on the end of the diving board. He fell and hit his head, mouth first, onto the side of the pool. There was no blood but he did do a good job on his tongue. He almost bit clean through it. Worse yet one of his teeth was knocked in. It is only slightly visible but he very definitely moved one of his front teeth into toward his mouth about a millimeter. This will mean a trip to the dentist today. I don't know what will come of it but I am pretty sure that he will eventually come out of this experience with one tooth less. Thank goodness for baby teeth.

So I guess you are wondering what was so fun about this scary weekend. Hmmmm, good question. There was nothing special but I guess another weekend home with my family doing mundane things is about as good as it gets. We went and played at playland in McDonalds. We swam on no less than 5 occasions. We went bike riding, tree climbing, and bug finding. We even got to watch Daddy get out the chain saw and do some tree trimming. It doesn't get more mundane or more ordinary but it also does not get any better.

Good Morning! Well, yesterday Graham woke up still complaining of his tooth hurting but incredibly excited to go to the dentist to get a new toothbrush - ah, simple pleasures. I took the kiddos to school and about the time that I got back to the office I received a message from Lynley stating that Graham had an appointment at 10:00 AM. It was not long before I was back on the road again to pick up the little dudester. Graham was truly excited when I picked him up. If I did not know better I would think that the child did not get out very much but, none the less, he could not wait to go to see the dentist. We hopped into the car and arrived at our destination within minutes. It was not long before Mommy joined us in the waiting room. Graham was soaking it up. Here, he had his Mommy and Daddy all to himself and he was getting ready to see the dentist. What could be better? Even Santa Claus he had to share but this, this, was his moment.

Graham did very well back in the examination room. He watched his mother and I play video games (trying to gain his interest) and he even got to have his very own x-ray. I reviewed the x-ray and as usual I saw signs of neuroblastoma all over it. Of course anytime I look at an x-ray, ct, MRI, MIBG, smudges on the wall, or spots on the floor I see neuroblastoma so it really did not mean very much. The good news was that the dentist actually had some experience looking at an x-ray and she found it to be completely normal - nothing broken! She did do some pushing and pulling on his teeth and she even took a gander up at the roof of his mouth. There is some trauma right behind his upper front teeth which occurred from his fall. He will be sore for a little while. The good news is that the tooth has tightened up and it looks to be okay. We will keep an eye on it at each checkup but she seems to think he will survive. If the tooth and nerve did in fact experience enough trauma to die we will see it over time. His tooth will slowly turn darker. As long as it does not abscess it looks like he will keep it. The good news is that none of this is likely to happen. In the end, Graham got his toothbrush and some quality one on two time with Mommy and Daddy. I think this goes down as a good day in his book.

Sydney had a good day as well. She has not mentioned hip pain in about 48 hours and that is making us all feel a little bit better. It looks like our next round of Accutane is in our very near future.

Yesterday I was talking with my veterinarian about my plans with Sydney. Does that sound strange? Well, I don't know about you but I think it is a great idea to always run pediatric oncology decisions by your veterinarian. It has always worked for me. I love the perspective of a DVM. This habit started very early on in Sydney's journey. I guess I stumbled onto this benefit because Bob was not only a close friend but also because he was also Kacy and Hogan's (our dogs) doctor. It was handy to have him around. The really interesting thing was that many of the therapies Sydney was on were also common therapies used in animals. Although the regimens were not nearly as complex as they were in neuroblastoma they were the same drugs, used to achieve the same effects. Often, parallels can be drawn. I like talking to Bob because he understands the science and the medicine of Sydney's journey because he is a doctor who has experience with cancer. When I mention a drug combination or treatment that I envision he immediately gets it and we can move quickly into the meat of the matter. I also appreciate his perspective because he does not treat humans. From an emotional standpoint of evaluating options of a child with cancer his emotions are still very raw. He has knowledge but he has never treated a child before so that level of desperation is still there - that feeling of the unknown that keeps you fumbling for new answers. I guess what I am trying to say is that I appreciate his perspective because he has the medical know how but he also feels my desperation as a parent and experiences, first hand, the need to balance reasonable quality of life. It is good for me to bounce ideas off of him. He gets it.

Regardless, Bob and I discussed my newest treatment goals for Sydney. I outlined the many reasons that I wanted Sydney on Accutane right now. I told him about the neuroblastoma stem cell theory that led me to consider administering ongoing sporadic dosing. I reviewed the benefits of using the 14 days of treatment to achieve the proper pharmakinetics while using a larger time period in between to extend the treatment cycle, to balance quality of life issues, and to get us closer to the availability of another retinoid therapy. All in all, he gave me the impression that our decision was reasonable but the exciting part of the conversation for me was delving into what his other ideas were.

One of them that really hit home for me was his use of Omega 3s, specifically DHA. He has been fortifying dogs diet with DHA for many indications and has seen some pretty remarkable results. This has always been an interest of mine because of some research out of Sweden which showed that high doses of DHA had some efficacy in neuroblastoma. Mind you, this was data in Petri dishes and mice but it was still showing some fairly dramatic effects. The trick to get it to work well in kids is all in the dosing. The dosing need to achieve the same levels found to work in mice would be significant - well over 1000 mg per day and that is just DHA. I child would have to swallow a small pharmacy of giant fish oil capsules. Heck, I am a big boy and it takes concentration for me to swallow even one. I can't imagine that it would be easy for Sydney to swallow even one and she is a pro. The interesting thing was learning how he was getting these doses into animals. The actually have a specialized pump which they use to fortify the food. Potentially this could solve the problem of getting it into kids. In adults they have seen few side effects. In fact the side effects they see at the doses we are talking about is diarrhea, fish breath, and occasional stomach upset but relatively minor in comparison to many of the other therapies.

So what does this all mean. Well, it just has me thinking that it might be time to reinvestigate the science of DHA and neuroblastoma. The barrier to entry that I have always seen has been getting the drug into kids. If that can be addressed, it may make it worthwhile to move it forward. Anyway, I thought it was an exciting discussion and it got my brain working. I don't have many options for Sydney and it is worthwhile to consider things such as this - low risk. I know Sydney, like any of us, could probably use much more DHA in her diet just from a nutritional standpoint and it may be worth pushing the envelope a little bit if the science supports it. I won't do it while Sydney is on Accutane just because of how it is metabolized but it may be something to consider at another time. Regardless, it was an interesting and intriguing conversation. I am so glad Sydney has a good veterinarian.

This is just a quick update. Today I am off to Houston. There is another Neuroblastoma Parents Group meeting. Heidi Russell will be doing a follow up to last month's topic. Todays presentation she will be discussion the neuroblastoma lab research being done at Texas Children's Cancer Center. I also have a meeting with another family who is planning a goldf tournament in Las Vegas to benefit the CNCF. It ought to be a very busy day. Have a good one.

Good Morning! I am back from my trip to Houston and, other than being in the doghouse, the trip went superbly. Lynley is not a big fan of the traveling, even if I am back by 6:00 PM the same day. I don't know that I learned a lot yesterday but it certainly was a good refresher course. Dr. Russell gave a basic science discussion and described two of the ongoing research projects that are being worked on in the lab at Texas Children's. It wasn't by any means an overview of all of the work that they were doing with neuroblastoma but it certainly was a glimpse into some of their most promising projects. The first was an interesting new approach to solving the N-MYC problem. Just about everybody in neuroblastoma knows about N-MYC in neuroblastoma. It is an indicator of how aggressive a particular child's neuroblastoma is. For example, Sydney was N-MYC amplified. That is not a particularly good sign. In fact, it is a bad indicator. But, what it means is that the genetic material (the DNA) of her neuroblastoma cells included extra copies of the N-MYC gene. So, what? Well, N-MYC is believed to control cell growth. The more N-MYC you have the more aggressive and faster growing your neuroblastoma is. So, what the researcher at Texas Children's did was look at N-MYC and see what else seems to be out of whack when N-MYC is amplified. They found that when N-MYC was amplified MDM-2 was increased as well. When they looked closer at MDM-2 they discovered that it suppresses p53. p53 is a well known to regulate cancer cell death. So, if you loose p53, your cells are resistant to dying i.e. they lose their ability to die. So, there you have it, basic science. Increased N-MYC, increases MDM-2 which decreases p53. The less p53 you have the harder it is to kill neuroblastoma. So, Texas Children's has looked for a drug to suppress MDM-2. The good news is that they have found it in a drug from Roche called Nutlin. The bad news is that the drug is only available for research (not for treating patients) and it does not look like that will change. The other hint of good news is that there is a new version of Nutlin coming that will hopefully be better and there are other pharmaceutical companies that are working on other MDM-2 inhibitors. Now, to make this apply to our kids they have shown that in combination with certain chemotherapies Nutlin makes them up to 10 times more effective. This would mean that we would likely be able to dramatically decrease the amount of chemotherapy that we give to our children while still increasing the effectiveness. This is important science but unfortunately still quite a ways away from being in our children.

The other research presentation she made was interesting as well. I have spoken about it briefly before but they have discovered another surface protein on neuroblastoma. However, I think I have made this entry technical enough for today and I think I will end it here and save that discovery for another day. The great news is that all of the rugrats are fine and they were happy to see their Daddy back home yesterday evening.

Good morning!! Here it is Monday morning all over again. Our family had a pretty good weekend. Sydney is doing well although she continues to look like a poster child for mosquito abuse. Her legs are covered and we have had some great difficulty keeping her from scratching them. By the end of every day it looks like we are beginning to win but by morning she has scratched them all to bloody sores again. It is fairly disgusting. We have tried a mixture of topical ointments to soothe the itching but nothing seems to get past her sleeping psyche. We have tried everything you can think of over the counter and have even tried some home remedies such as toothpaste. Most work for awhile but none seem to last through the night. Other than looking like an insect bite experiment gone bad she seems to feel relatively good. She enjoyed hours of swimming on Saturday and a fun trip to the zoo on Sunday.

Graham, wow, what can I say about Graham. Graham is about the sweetest kiddo ever. He is the sweet sentimental one of the bunch and quiet often tortured for his innocence. It is this quality of his that I am most proud. He truly cares for others and quite often puts others before his own needs. That is a tremendously surprising trait of a 3 year old if you ask me. Quite often, whenever one of his sisters beckon he is always the first to help. He is genuinely sweet. Of course, with this comes sensitivity as well. Graham often wears his heart on his sleeve and can easily come to tears. As a big manly man I would love for him to toughen up a bit but I can honestly say that I would not trade it for his sweet demeanor. This is not to say that he is a cry baby either, at times, we also get a glimpse of his inner strength. Last week, I had to run back to the school mid-morning to drop something off. I was watching as a large boy was giving Sydney a hard time on the play ground. He was chasing her around throwing balls at her. It was clear that it was upsetting Sydney and she was near tears. Graham grabbed a ball and stood right between Sydney and the big boy the next time he tried to throw a ball at her. He was twice Graham's size. He tried to throw the ball at Sydney and Graham deflected it and then threw his ball right at the other boy knocking him back. All of the kids were shocked that Graham stood up to this little boy. All the other kids ran up to say something to Graham and then everyone started playing catch except for the large boy that was bullying Sydney and the other children. He left to go play by himslef. I have never felt more pride than when I watched Graham defend his sister like that. That is my boy!

Ainsley. hmmm. Ainsley. Ainsley will no doubtedly be my biggest challenge. She is the sneakiest little twerp imaginable and she certainly has cuteness working in her favor. She is fearless and absolutely adorable. She is also the one of my children gifted with the most sophisticated sense of humor. She is really quite funny and her humor seems to transcend her age. She does and says things that would surprise me if I heard them from someone 5 times her age. She also seems to be the toughest of my gaggle. She has no fear of giving back what she receives and does not stand for any abuse. She is also smart enough to realize which battles she can and cannot win and seems to use humor to get herself out of situations in which she realizes she will lose. I have not seen this trait in any of my other children and it amazes me to see it in a two year old but it is clearly part of who she is. I hate to say that one of my children is smarter than any other but there is no doubt that this one ranks the highest in street smarts. There is no doubt in my mind that this will be my child that tries to sneak out at night when she is a teenager but thankfully she will probably be the one that can best handle herself. She exudes confidence and cleverness. The funny thing is that, if you asked her teachers, I would think they would give you a completely different picture. They would tell you that she was sweet and demure - more innocent than any of my other children. They would say that she is quiet and loving. The funny things is that she is just reeling them in to her web of trickery. She is just setting the stage so that her peers are the first ones to be blamed when she steals the cookie off of the table. I am telling you. Do not underestimate this one. She is the sneakiest yet. And yes, she still has me wrapped around her little finger.

Yesterday another angel gained his wings. Nathan was diagnosed with neuroblastoma just two months before Sydney in April of 2003. His mom has been on the list serv that I participate on for nearly as long. Although Nathan was treated at Sloan Kettering we never had the opportunity to meet in person but it feels as though they half been life long friends. Over time, these families feel like they have become my own. I read so many of their sites daily and often we parents correspond. You learn the children's likes and dislikes and share the experiences of the all the ups and downs. It feels like losing a close friend and there have been so many lately.

I find myself thinking back on all of those that I know and have known and it becomes increasingly clear that we are still very clearly losing this battle. Nathan is one of the few old friends that we had left. I pray that his family finds strength for today I feel like a have none. Today I feel like I lost another little piece of me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I do know that they are eventually used. We fill out the forms and then they eventually come and grill us regarding the answers. Yes, they ask us the same questions. What is Sydney's birthday? What is her full name? What are her allergies? I am not sure of the purpose of this inquisition but I am sure there is one. I guess they have to verify that they do indeed have the right patient and they have t