As if I don't have enough to worry about

Okay, okay, okay already. So, here is the status. I would never contradict the female contingent in our house. I know better. All I am going to say is that Ainsley did not complain about her ear hurting all day. Furthermore, when asked if she had an ear "owie" she said "No!" (go figure, a two year old saying that!) Despite this apparent lack of ear infection-ness she was certainly out of sorts. It is clear that she is not up to par. She is whiny and cries a lot which is the complete antithesis of Ainsley. In the big scheme of things this is easy. We just have a sickly twerp. I can deal.

Sydney, on the other hand, is a bit of a different deal. She is collecting maladies like I am collecting grey hairs. Her latest oddity is an assemblage of bumps on her noggin. Lynley is pretty concerned about them and myself, less so. I will be blunt. Lynley thinks they are neuroblastoma. I think they are a very strange presentation to be neuroblastoma. I think they are more likely to be some kind of bite. Lynley will quickly point out that if they were bites why would she have 3 of them on her head and the other kiddos do not have any signs. My thought is because she is a twerp that is constantly rubbing her head on the dogs - don't ask. Yes, I guess I am making the inference that my daughter has fleas. Lynley does not feel any better. Anyway, there are 3 little bumps about an 1/8 (to a 1/4) of an inch in size that are placed on almost polar opposite sides of her head. One is just above her right ear. One is on the north pole of her head. The last is somewhere between her left ear and the top of her head. If she were a globe I would put it at about Seattle, Washington. To me, they all look the same but Lynley thinks the one in Seattle is a bit bigger. According to Sydney, it is the most painful of the 3. They only appear to hurt, however, when you press on them. Anyway, I am no expert on neuroblastoma metastasis on the skull but I would think that we would see a larger raised area and some differentiation in the sizes of the 3 spots. But who knows, every kiddo is different and it is not like we have ever seen skull mets on Sydney.

So, although cute, Sydney is quite the mess. She has a "growing" spot inside her arm, a loose adult tooth, and 3 bumps on her head. This goes without saying that she is covered in her usual garb of scratches, bruises, and abrasions. I am continually amazed by what she does to herself. Regardless it is plenty to think about and we really do not need anymore at this particular time. The good news is that we will see the dentist tomorrow afternoon. As for everything else, well, I think we have to sit and watch patiently.

Purpose is an entirely different thing when you live with the monster in the back of your mind.

Late effects of viruses and cancer

Okay, so the virus was defeated. That does not mean that there is not other funkiness going on around the Dungan household. Some of which is benign (or relatively) and some of which seems less so. The seemingly easy part is Ainsley's ear infection. It appears that Ainsley was able to triumph over the virus but not without the snot leaving its mark on her. It appears that she has developed a grade A ear infection. Now, this has not been officially diagnosed and I personally have not been apart of the decision making process (I had a board meeting last night which kept me from the discovery) but I have been informed that the girls did come to this decision. I would also like to point out that I am a smart man, having fast experience of being outnumbered by 3 females. I know that if even I have not seen the ear infection with my own eyes it must be absolute truth if the girls think that is the case. Therefore, Ainsley must have an ear infection.


The worse and more ominous occurrence has to do with Sydney. Thankfully it has less to do with our most recent scare (the arm that continues to plague by waking and sleeping hours) and more to do with late effects of her treatment. It appears that one of her new adult teeth is, in fact, loose. To our knowledge she has not bumped it or jarred it. It would be one thing if this had happened to a baby tooth or injury but it is clearly unrelated to either. We have hoped that this was some mad fluke but are coming to realize that this is probably just the beginning of some young dentists career of work.


The unfortunate part of treatment that many are unaware of in kiddos is the damage that all of the chemotherapy does to teeth. The is especially present in children with neuroblastoma because of the timing of the disease. The average age at diagnosis is two and, unfortunately, this is also the time that "seedling" adult teeth are just starting to take root. The drugs seem to take their toll on these teeth and by the time they reach the surface they are often deformed or non-existent. This leads to a lifetime of dental work. Of course, like hearing loss, this is another side effect from treatment that receives little, if any, financial support from the health insurance company. Instead, it becomes a reason to take a second mortgage out on the house. So, bottom-line, Sydney has a wiggly adult tooth and we will need to get her to the dentist so that he can make his next monthly Mercedes payment. Unfortunately this is an important week of testing for Sydney at school and we will need to carefully coordinate that.

The purpose coaster rides on.

Virus Defeated

Good morning! This will be a quick update as I overslept this morning. I am happy to announce that it appears that all of the kiddos seem to be on the mend. Ainsley stayed home from school on Thursday and Friday. Sydney, on the other hand, woke up with a 102.8 degree fever on Friday morning. It seems that all of the kiddos have now made there way through the virus. For Sydney, this was a little problematic because she was supposed to spend the entire day being tested at the school. Hopefully, by getting her back into the swing of things she can finish up the testing today.

The weekend was relatively unremarkable. Of course I say that with the exception of our 11th wedding anniversary, the steel one. Lynley and I went out for an extravagant night of dinner and then spent the rest of the evening scavenging the stores of Cow town for something steel and memorable. In the end, we came up with a stainless steel sink stopper and a horseshoe. We were pretty surprised at how much identifiable steel there was to be had. But honestly, what could be more perfect for us - a sink stopper and a lucky horseshoe - romantic, huh? Regardless, the point is we had a fun time and we were still home in time to put the kiddos down to bed.

Well, I had best be off. There is a mountain of planning and preparing going on today.

With hope and purpose

The yellow sticker

Yesterday, Sydney brought home a yellow sticker from school. That is not good. You see, every day each child in Sydney's class brings home a sticker in their folder which tells us a little about their day. There are 4 stickers and they go something like this. Blue is good. Green is fair. Yellow is bad. Red is horrible. On most days Sydney brings home blue stickers. In fact, it is very rarely that she will bring home a green sticker. She will receive a green sticker if she did not listen well, if she was talking when she wasn't supposed to, or if she did not do what the teacher asked. More often than not these are a direct result of Sydney having too much fun and being too giggly with her friends. A yellow sticker, however, she has never received before.

You, like me, must be thinking. Wow, what could she possibly have done? Sweet little Sydney, defeater of cancer, lord of the twerps, how could that be? Well, it happened. You see, every child has a nemesis, another child that torments them. I think this is especially true with girls. It is not really the point of the story but I know because I tormented many of them. Anyway, there is one boy in Sydney's class that is constantly pestering her. Yesterday, in addition to his normal bugging in which teases, pokes, and prods; he made a bad judgement call. He pinched Sydney and it was pretty hard too. It left a welt that was still there when I picked her up from school. Well, Sydney is a little bit like her mother (if you know her, you know what I mean) and she just hauled off and clobbered the boy. She wasn't nice. She wasn't gentle. She hit him as hard as she could. For this, she received a yellow sticker. Well it was for that and not paying attention later in the day but I think that was much more of an accident. Regardless, Sydney hit a boy and now she had a yellow sticker.

Now, with Sydney receiving a yellow sticker she had to be punished pretty severely. I did all of the things I was supposed to. I made a big frowny face after she told me - even though I was secretly smirking on the inside. I told her how wrong and bad it was that she hit one of her friends - even though I secretly thinking "Yippee!" and "Good for you!" and "That's me girl!" I took her home and sent her to the kitchen table where I made her do homework and write "I will not hit my friends" 20 times on paper. She stayed inside and worked on math problems and read chapter books while the rest of us played and laughed outside. She was relegated to her room and she went to bed early as well. I cut her no slack and I used my big frowny face to the best of my abilities. There is no doubt in my mind that she knows what she did was wrong and that I am very, very disappointed in her.

I guess the irony really is that I am kind of glad that she hauled off and walloped the boy. Everyday I have to hear how he pesters Sydney. I have to hear how he got a red sticker and how he bugs her. He constantly calls her names. He is just an annoying nerd. I happen to know this for sure, ironically, from past experience. I was that full-fledged annoying nerd. We all need a good wallop know and then. I got one. So, I guess the point is that I am really not all that mad at her. I understand. I wish she wouldn't have chosen to haul off and hit the boy but I also know that telling the teacher would not do her any good. She has tried that. Perhaps now he will get the message. Just don't tell her I feel this way until she is 20.

It looks like hidden purpose today.

2008 Neuroblastoma Conference

Good morning! Well today I wanted to make everyone aware of the upcoming Neuroblastoma Conference for Families and Caregivers on July 17-20, 2008. I tell you this because I think it is important for just about every family that has (or has had) a child with neuroblastoma. Not only is it a great time to meet other families and children that have walked in your shoes but, also, it is an incredible opportunity to meet with the world's best when it comes to treating neuroblastoma. In fact, this year's conference has some of the top names in neuroblastoma research and they will be tackling some of the most controversial subjects in neuroblastoma treatment. Knowing what is coming, I can guarantee that you will learn things that you need to know. Many of us think treatment is black and white and actually it contains many, many shades of grey. The right answers can be found but it is often dependant on a thorough understanding of the treatments, their rationale, and their side effects. Often, the perfect drug requires the perfect timing. We will address the pros and cons and get to the facts. You will get the information you need to know.

One of the most interesting things about this year's conference is a change from the way we have done things in the past. Typically, each presentation during the conference lasted between 30 and 45 minutes. That was then followed by a 15 minute discussion period. Although this pattern will continue for many of the presentations, we will be doing something very different for two of the most important topics. This year we will tackle 2 subjects in the form of a panel round table discussion. We are hoping that this change in format will help to tease out some of the important issues and questions that are rarely discussed but vitally important to know. Additionally, we are hopeful that it will also bring to light the many sides of every issue. The panels will be made up of two groups, a group of neuroblastoma experts and a group of parents. The two topics that we will be covering are Transplant Options and Relapse.

During Transplant Options we will be discussing every major therapeutic approach available. We will discuss the pros and cons of single transplants, tandem transplants, autologous transplants and mini allogenic transplants, transplant combined with MIBG, and finally no transplant in favor of immunotherapy for consolidation. I can't guarantee a definitive answer on what is best for every child but I can guarantee that you will walk out of this discussion knowing the pros and cons of the available options. Personally, I am extremely excited about these discussions because I truly believe that we will finally be able to get to the bottom of many of the great questions of neuroblastoma. Several facts will come to light that are rarely, if ever, discussed.

Relapse is also a very hot topic. As you probably know, this has been a personal interest of mine. There are different beliefs and strategies to consider when choosing relapse options for your child. Often these differences are never discussed with families. We are going to discuss the various strategies and their pros and cons. We will also have a through discussion on the various options available and how they can be utilized within the treatment plan. Parents are often looking to the next treatment that might work instead of the big picture. By understanding the big picture we as parents can make better decisions, better understand our options, and understand the perspective of the oncologist. This knowledge is useful to help us carefully balance efficacy and quality of life. Finally, we hope to help parents understand how to identify promising treatments for their child and how to interpret some of the preclinical data. We often make decisions based on others response or lack thereof and it is important to understand when it is appropriate (and when it is not) to do so. This will be one of the most important and enlightening discussions this year.

As usual we will also be discussing all of the other important aspects of treatment from stage I to stage IV. Additionally, although I have never attended, the angel parent sessions will also be happening concurrently. In the past, many of the parents and families that have attended have told me that this was an incredibly valuable experience. If you have lost your child to neuroblastoma, I encourage you to attend.

Finally, time is running out. Be sure to register today. Complimentary rooms are first come / first serve. You can find out more and register here:
http://www.cncf-childcancer.org/cs/blogs/nb_conference_2008/archive/2008/03/28/22174.aspx

With hope and purpose,
Mark

Scribble scrabble - oh joy! Or is it?

Good morning! Last night I was treated to a pretty special event. Now, I probably should have expected to see something spectacular but, you have to understand, I have pretty high standards. You see, last night was an open house at Sydney's school and our opportunity to see how much she has progressed over the year. Yes, I know, this is where you go to school and ooh and ah over all of the scribble scrabble that your child has accomplished over the last year. Of course we would go. We could have been doing a hundred other things that were more fun but, none the less, we decided to go. Don't get me wrong. I am all about seeing my daughter's work and oohing and ahhing over what she does. I get to do this everyday - so, going to do this in public and looking at other children's work was really not on my list as being something really exciting. As far as I was concerned, this was just another one of the things that you do because you are a parent. I certainly wasn't looking forward to it. I guess this is the reason I was so surprised.

You see, we did this last semester. We got to go and look at all of the things that she and the other children had done. With the way that Sydney's school grades progress this is about the only way that we could compare her to the other kids. This is important to us because, while it is all fine and dandy to see a chart of all of the tasks that she can accomplish, it really does not give us a clear picture of what she should be doing and how she compares to others her age. Don't get me wrong. I am not in it for the competition. I simply know that the likelihood of some long term neurological side effects from Sydney's treatment are probably pretty likely. I need to know when she is not doing things that others her age can do. I need to know when she is lagging behind. Finally, she misses a ton of school for doctors visits and scans and I need to know what to work on to help her keep pace. Without a scale or a chart to compare her to the standard I really have no idea of where she stands. That is the most frustrating thing I find about the new grading trends.

So, how is she doing! Well, well, well, you would not expect me to do all of this build up if I was not going to brag a bit. My daughter is stellar. She has totally surpassed my expectations for this year. You see, I was just hoping to catch up - to stay up with the pack. I was hoping not to see an exception at the bottom of the curve and had prepared myself for the possibility. What I was not expecting was to see her work to stand out as a model of what can and should be done. Now, I don't want to stand here and say my kiddo is the best or the greatest (although she is) but to rather show you her improvement and to show how far she has come. In the beginning there were many things that she was doing below the level of the other kids in her class. Yes, at the beginning of the year we were still catching up. She was not at the bottom of the class but she certainly was not at the top and there was a huge gap. She was lagging in many, many areas. For example, her handwriting was almost completely illegible and all of the other kiddos seemed to have better letter formation. However, as of last night, that had completely changed. I looked at every child's handwriting and was completely shocked to see how much better Sydney's handwriting was. Hers was picture perfect. I mean literally. She could write the books on correct letter formation. It was brilliant. I don't mean to compare but it was now miles ahead of any other in her class -not even close. I found this trend to be consistent with much of what she did. There is clearly a pattern in her work of going from the worst to one of the best. Most importantly, I did not discover any of those areas that I was to be concerned about. She is making tremendous progress. I have to take back all of the things I said about not wanting to see all of the scribble scrabble. It was the best and most fun thing we could have done with our evening.

Purpose just keeps pushing forward.

530 pieces and 171,408 reasons

Good morning! Well, yesterday was about two major feats. The first began earlier in the weekend. You see, along with committing ourselves to the neuroblastoma walk there was another item that we committed ourselves to over the weekend. This was Sydney's science project on the solar system. Thankfully, Sydney drew the earth as her planet of responsibility. This meant that we had to construct a 3d model of the earth and a poster of fun earth facts. By the end, Sydney was left a little loony. Here is a picture of her talking to inanimate objects.

Knowing that everyone would probably paint a Styrofoam ball, Lynley set out to be different. She charged Sydney and I with constructing a 3d puzzle of the earth. Thankfully she was thoughtful and it only required us putting together 530 pieces. Now I am making this sound harder than it actually was. You might even be surprised to find out that Sydney identified each piece to be added to the puzzle and put just about every single piece together. You see each piece was numbered on the back from 1 to 530. This made it much easier but it is also what made the puzzle such a great exercise for Sydney. We divided all of the pieces into groups of 50. So we had a pile which included pieces numbered 1-50, 51-100, 101-150, etc. She then sorted all of those pieces, put them in order, and snapped them together. It was then my job to take the strips of puzzle pieces and create the 3D masterpiece. After many cave ins and rebuilds we finally delivered the earth to school yesterday morning. It was the hit of the class and something I am very glad that Sydney and I got to spend a large portion of the weekend working together on.

Yesterday was a very special day for another reason as well. After dropping off the kiddos and making my delivery of the earth (extremely carefully) I had the opportunity to drive to Plano for a photo op. Now this was no ordinary photo op. It is not very often that you get to pick up a check for $171,408 on behalf of the Children's Neuroblastoma Cancer Foundation. I don't want to say too much because it has not been officially announced but I thought it may put a bounce in the steps of a few other parents out there. It was a good day for neuroblastoma.

It was full of purpose.

A Purposeful Walk

Good morning! First off, I want to thank everyone for coming out and supporting us at the 1st Annual Neuroblastoma Walk. I was really blown away. In the end, we had a little over 250 people show up at the event and they raised just over $15,000.00. I was blown away by the level of participation and so incredibly thankful for all of those that showed up. Milling around in the crowd were also 12 families that had children with neuroblastoma and I even had the privilege of meeting an 18 year survivor of stage IV neuroblastoma. I was in utter disbelief. I have been in this game for a long time and that is the longest survivor of stage IV neuroblastoma (remaining in remission) that I have ever met in person. I am sure that there are others but she is the first that I have ever actually talked with in person. It was the highlight of my weekend.

You also may have noticed that Lynley, the kiddos, and the Norman-ator all made their appearance at the walk as well. Sydney walked all 3 miles by herself. She even got to walk it with her kindergarten teacher, Mrs. Lewis. Graham walked the better part of half of the 3 miles and rode in the rest of the way on my shoulders while I brainstormed with Dr. Granger. I was pretty surprised that Graham had made it that far as he was still recovering from a cold. Little Ainsley also made it much of the way before grabbing a piggy back ride for the remainder of the walk.

Believe it or not I spent much of my time discussing a new nano technology/Irinotecan adult trial which appeared to have implications for children with neuroblastoma. If I am being honest, I never had a really high level of excitement regarding these discoveries. To me, it was just a modest improvement on an already available chemotherapy. How much would it improve efficacy without increasing toxicity? How much improvement would it really offer? Personally, I have always been far more interested in the truly novel therapies that have the potential to be a home run. That is my area of great hope. However, I do understand the need for better and more targeted drugs. I "get" the need for improvement, however, I am looking for the cure. Regardless, I have heard about this technology's use with Irinotecan from enough people and I figured it was about time that I truly submerged myself in the research to form a real solid opinion of what I think about it. I still don't have the answer as I have not completed my research but I am still shocked by all of the people that seem to be so excited about the technology. In the days to come I hope to have pulled together some worthwhile thoughts.

Well, I had best be off. I have a ton of things to do. I am already buried and the week has not even begun.

There is purpose afoot.

A purpose-full week

Hello. Well, I am back from my trip to Houston. There is nothing quite like making a 9 hour round trip in the car. Unfortunately, I came home to a sick son and a hail storm. That was not exactly what I was looking for. I guess you could say that Graham was under the weather in more ways than one. Not 15 minutes before the hailstorm he was spewing grossness across our bedroom floor. Was that a clear enough picture for you? I was hoping that sharing my disgust would make things better - apparently not. Now we are just both disgusted and I don't feel any better. Regardless, I will be glad when he is back to his normally twerpful self like below.

As for me, well, I am right in the midst of a flurry of business. Yesterday, I was in Houston presenting information about the 2008 Neuroblastoma Conference for Families and Caregivers. Today I will be going to the Wipe Out Kids Cancer Gala where we will hopefully be touching hearts and pocketbooks(no offense to invited gifts). The focus of this effort will be to fund to positions at the Children's Medical Center of Dallas which will also help to improve care for children with cancer and, in my mind, neuroblastoma. We are hoping that the additional dollars will help to woo exceptional talent and, personally, to bring focus and improve care for patients with neuroblastoma specifically.

Tomorrow is all about the 1st Annual Neuroblastoma Walk for a Cure. The awareness generated and funds raised by this walk will specifically benefit children diagnosed with neuroblastoma and treated at Cook's here in Fort Worth. These funds will be used to help seed the newly founded Neuroblastoma Program. Funds raised will help to bring new personnel into the fold that can help focus talent on neuroblastoma research. Although Cook's does not have their own basic science laboratory to conduct preclinical research they are an important cog in the research process. Simply put, they see and treat a large amount of high risk patients and, most importantly, put them on trial. They are an important institution to both the COG and the NANT because of their commitment to delivering world class cutting edge care and doing so in a meaningful way that helps to answer important research questions. They are that important piece of the puzzle that actually delivers the new treatments to patients and they do it accurately and in comparatively high volume. This is why it is so important to provide the Cook's Neuroblastoma Program with the necessary funds to hire personnel and to buy equipment to help deliver these cutting edge treatments and care to our families. Simply put, dollars spent here will not only benefit patients with neuroblastoma with high quality care but will help to speed the research engine.

Please come out to support us and to make noise on behalf of all of the other families afflicted with neuroblastoma. Whether you bring a bucketful of dollars or or a happy smile we would appreciate your support tomorrow morning. Information about the walk can be found here:

http://dungan.blogspot.com/2008/03/1st-annual-neuroblastoma-walk-for-cure.html

With hope, purpose and thanks,

Mark

On the road again

Good morning! It will be a quick update as I am out the door and on my way to Houston to make a presentation for the CNCF on the Neuroblastoma Conference for Families and Caregivers. If you are interested in finding out more about the conference or attending yourself, information can be found here:
http://www.cncf-childcancer.org/cs/blogs/nb_conference_2008/archive/2008/03/28/22174.aspx

I am off to purpose and a 4 hour drive:)

Big people just don't get birthdays!

Okay, I want you to know that I am extremely appreciative for my wonderful and practical birthday gifts. They are very nice and each and every one of them I truly needed. Somehow, however, they just missed the message that I tried to send out yesterday. It all started out well enough. The kids were excited all day long. They could not wait to get home from school to celebrate Daddy's birthday. After school Mommy came home from work and DeeDee came over. It was officially time to open presents. As you can see from the picture below the kiddos get it. They can't wait for me to dive in each and every card. It is a celebration.

Next came presents. The kids were so excited they could not stand it. Their gift came first. In true kiddo style they picked it out, used mom's plastic, and got Daddy what they wanted. Now, what do kids get people for their birthday. Well, toys of course! And, that is exactly what they got their Daddy - a genuine, remote control, red, land and sea, hovercraft. The perfect toy for a Daddy. Look at their smiles. This is what birthdays were made for.

You see kids just get it! Now lets look at the adults. I received wonderful gifts from them. My wonderful in laws gave me a brand new Sonicare toothbrush and a gift certificate for new shorts. I am guessing they think I have some hygiene issues. But, hey, that was very nice. It was wonderfully practical, hygenic, and responsible. They were not to be outdone though. My mother topped them all with a brand new ....

dryer! Come on, you can't get more excited than that. That is right, a genuine extra large capacity gas dryer. Now who would want that for their birthday. This is truly the Mecca of birthdays.

Like I said, grown ups just don't understand birthdays.

I wonder if that is because we have so much purpose.

Thank you everyone!

A birthday through young eyes

Well, well, well. Happy Birthday to me. Yep, the little Doogster is 37 years young today. Boy time flies when you are having fun. The kids are all very excited about my birthday. They have all been working on me. Each one has made a pitch to convince me to go to Jumping Party, Pump it Up, or Chucky Cheese for my birthday dinner. I hate to break it to them but it is going to be a bit of a let down. Daddy wants a steak for dinner and I don't think any of those places meet that specific need. However, after dinner, there will be ice cream involved - at least there is some hope.

Kids are great when it comes to birthdays. If you are an adult and you have not been around young children you are truly missing something special. Watching and sharing with them is, once again, a reminder of what is important in life. They absorb themselves in every detail and every one is very, very important. What kind of cake daddy - nila or chocolate? Mm Yum! Whats gonna be on your cake? Are you going to have a golf cake? What kind of decorations? Are you going to have American Idol plates? What kind of "pupcakes" are you going to take to work? You can't open your presents until dinner! Mommy got you Superman wrapping paper so you can have a Superman birthday.

As we grow up we begin to forget what important decisions all of these are. Our birthdays lose some of what makes them special. Face it, everyone deserves a special day at least once a year - even if you are an old curmudgeon like myself. I think we should all be required to get party hats, select a theme for our dinner plates, and pick the decorations that go on the "pupcakes" that we take to work. This is one time that we really should take the lead from our kiddos. Since when do birthdays have to just mean one year older? It is a celebration of life. That is what I am going with. I think I will listen. In fact, I think I just might have a golf cake. I just wonder if they make "Mythbuster" party hats. Regardless, if you are on your way to work stop by Starbucks, grab an espresso fudge brownie, and celebrate with me - it beats a pupcake any day!

I am always learning from my purpii.

Looks can be deceiving

Good morning! We spent another great weekend together outside as a family. We had so much fun the last time eating breakfast at the botanical gardens that we all decided to go exploring again. This time I elected to take some pictures that were a little bit closer up so you could get a better sense of the twerplets. Doesn't Ainsley look sweet and innocent?

Oh, by the way, seconds after this innocent little picture she pulled all of the legs off of a lady bug. Do I have to tell you again? This is the one I will have to worry about.

Well, I am happy to announce that I read the MIBG scan correctly. Her arm is clear. As for her abdomen, well yes, it lit up like a Christmas tree. The good news is that none of it is disease. It is simply normal organ uptake. It is great news and now, well, now we wait. The waiting will be the hard part. It will be 2 and a half to 3 months before we look back again at her arm. Boy, that makes me nervous. I know there are many out there that probably think I am nuts for allowing them to wait that long. Honestly, I still have not decided how I feel about it. No, I would like to scan more often but, at what risk does that come? What do we gain by scanning more often? This is one of those decisions, like so many others in the land of neuroblastoma, which will come back to bite you if you are wrong.

If this is neuroblastoma, scanning earlier would, perhaps, allow us to catch the disease more quickly. I have always said that less disease is better than more. However, on the other hand it will take time for her arm to heal. At what point will we be able to distinguish disease from biopsy trauma. At what point will this go from being a questionable spot on the bone scan and MRI to definite disease. What will the trigger be? How will we know? In this sense, if we scan in a month what will we gain? If it is bigger, what will we really have learned? Will we be any more sure that it is disease? I don't think so. Sadly, I don't think any scanning in the short term will provide us any clear answers. In short, we will just subject her to more pokes and more hazardous chemicals.

Clearly the way purpose looks can be deceiving.

Metaiodobenzylguanadine

Metaiodobenzylguanadine (MIBG). Wow, I have been in this game way too long when I can not only spell the word correctly but I can also pronounce it without stammering. Ironically, I still can't read one of the darn things. It always looks to me like her abdomen is chock full of disease. I simply do not know enough about anatomy and what sucks up MIBG. All I know is that a lot of it is sucked up and, to me, it must be disease. The good news is that I did not see anything lighting up on her arms - that much a feel pretty secure about. So, if this test was to see if the spot in her arm was now large enough and active enough to be detected by MIBG (which it was) then I think we will receive a good report because nothing was there. However, if this scan was to see if a bunch of tumor was floating around in her heart and her belly, then she is completely riddled with disease. (Please, don't be alarmed! I am incapable of reading an MIBG scan in the abdomen.)

As you might imagine, I was pretty pleased with yesterday's little scan. Sydney stayed perfectly still for the 45 minute nuclear lashing and seemed quite happy about it. After the excitement, I rushed her back to school where she spent the remainder of the day engaged in the rigors of learning. I had the opportunity to spend the remainder of the day working diligently. That was a good thing as I had a bunch of last minute items to get to Erik Ludwinski's family for their Lunch for Life dream vacation to Walt Disney World. One could say that the last minute rush was unnecessary and that I should have been more prepared. I would say - "What would be the fun in that?" Our lives have been infused with chaos permanently so a little last minute hustle is just like icing on the cake. It takes much more than that to get the blood boiling.

We spent our evening, as usual, out in the back yard. It was the perfect evening. Unfortunately, Lynley and I were stuck removing several inches of oak pollen from the top of our deck and the bottom of the pool. With five tornadoes in the area the night before there was plenty of cleaning to be done. Regardless, everyone chipped in and it was not long before we had filled a 90 gallon waste cart with the sniffle causing stuff. The kids got to swing on the swing set. Graham and I got to play a little catch with the baseball. I even got treated to a steak dinner by my blushing bride - I just love when Kroger has a special on ribeyes ($4.99/lb - get 'em while they last!)

All in all, it was a pretty good day on the Daddy scale.

Which, by definition, is pretty high on the purpose scale too.

Our last hurdle

Good morning! Well today is the MIBG scan. In fact, I should technically be upstairs waking up kiddos to ensure that we get them to school early enough that we can get Sydney on the table at 8:00 AM sharp. I, of course, am hoping that we find absolutely nothing on the scan but I am also appropriately concerned. If this is disease, did we stir it up enough via the biopsy that it can now be detected? Is there now enough disease that it can be detected by MIBG? Yes, these are the questions that go through such a fragile mind. Regardless, I am worried as I should be. I will be hoping and praying for the best.

One of the things that I have not mentioned much as of yet is the 1st Annual Neuroblastoma Walk for a cure on Saturday, April 19th. The idea of this walk was started by a little girl that was friends with Michael Mancuso who lost his battle last year. Ironically, another friend of their family was diagnosed with neuroblastoma at the end of last year. This little girl decided to have a walk to benefit the neuroblastoma program at Cook's. Although I generally shy away from supporting fundraisers that do not support research initiatives through the CNCF because I happen to believe that they utilize research dollars the most wisely and effectively, I do believe in this event and I think it is important for neuroblastoma. The important thing is that we are out there to support the families and the wonderful things that the oncologists are doing at Cook's for neuroblastoma. If you live in the Fort Worth/Dallas area I am asking you to come out and support the kids and the walk. It is important that we create as much awareness as possible. The $15.00 entry fee covers the cost of t-shirts and refreshments. I encourage you to get one but, even if you don't or you can't afford it, please come out and support the walk. Your precense will be tremendously appreciated. The walk will include many of the families and children that have neuroblastoma. Please take a few hours out and show your support. More information is available by clicking on the Neuroblastoma Walk badge on the top of the menu on the left hand side. Sydney, Graham, Ainsley and I all look forward to seeing you. Bring your friends and family and come support a tremendous and meaningful cause.

It will be a walk with purpose.

No worse than worse!

Good morning! Well, the news is in and, thankfully, it is exactly as described. Both the MRI and bone scan are noticeably worse but the area of concern appears to be limited to the site of the biopsy. In other words, something continues to be there. It appears to be worse but they are blaming it on the biopsy that we had in Houston. No other lesions where found and it does not appear to be growing rapidly, if at all. Additionally, we can now rule out infection from our list of possible causes. The biopsy was in the right spot and due to it the cortical bone was penetrated. The infection did not take off as we would have expected. So now we have pretty much ruled out both infection and injury. That leaves "malignancy" and "fluke" on our table of potential causes. Finally, if all goes well with the MIBG they are planning to change up our scanning schedule - every 6 months with a 3 month MRI bonus! I don't know if I am down with that, especially without a differential diagnosis, but I will worry about it when I need to - which is not right now.

Today Sydney has her injection for her MIBG scan. Unfortunately, the peripheral IV that she worked so hard to preserve, blew yesterday morning. For this reason, she will have to go through the process of having another IV placed again today. We know it is going to be tough for her but we are hoping that it goes more smoothly than two days before. Today we will let them use her right arm which has a much better track record of success. I really do not want to see a repeat of what we saw the last time.

Yesterday we really had two things to celebrate. While it was tremendous news to hear Sydney's scan results we can't go through the day without announcing a very important first for one of our other Dunganlets. It seems that Ainsley made it through her first entire day at school without a diaper. Yep, it was her first attempt to go to school with big girl underwear. Not only did she go to school in her green and pink polka dotted underwear and green jumper but she came home in the very same pink polka dots and green jumper. It seems that we have crossed a huge milestone in the Dungan Journey. Having spent my last 7 years with at least one child in diapers I really don't know what to say for myself. It seems so strangely foreign. What will I do with all of my spare time. Honestly, as much as I am proud and happy, I am also a bit sad. Our last baby is all grown up.

Well, I had best be off. There is much to be done. Hopefully, for both of my girls, it will be an uneventful day. I think I will say a little prayer.

A breath of purpose

7 Sticks

Yep! It took 7 sticks to start an IV on Sydney. She was an incredible trooper even given the horrible situation. The good news is that we had the absolute best in the business trying every time. She was just that difficult to hit yesterday morning. Almost as quickly as they hit every vein it would blow. It goes without saying that we elected to keep the IV for 2 days while we wait for the MIBG injection. She will have to go to school with an IV in her arm but we think it is well worth the risk to keep her from having to through that little episode again.

I guess everyone is probably wondering about the results. Well, we still don't have them which is surprising and a little scary. It tells me that there must be some discussion going on. I have no idea what the MRI will come to show. However, I can tell you that the bone scan was certainly worse. Quite frankly, that was pretty much expected. We were expecting it to come back a little bit more pronounced due to the biopsy that she had about a month ago. The good news that came out of it was that we did not see any other spots lighting up on her bones. We were, obviously, very pleased for that. That was the purpose of the scan. The question then becomes "how much worse was it?" and unfortunately I just have no frame of reference to compare. It was worse. I don't know if this was an appropriate amount of activity to see related to the biopsy or if was more than expected. Unfortunately, I fear the latter. The spot of the biopsy was certainly more vivid but I am also pretty sure that the surrounding area of uptake was both larger and more pronounced. Unfortunately, I don't have the scans in front of me to compare so I have to go off of memory. Regardless, I am pretty sure that I am on the money.

The other concern that I can not seem to get from my mind is the fact that we put her into another position to take another shot of her arms. I don't know why. At first, I was led to believe that they were trying to get another angle that was comparable to a previous scan but that did not turn out to be the case. I fear that he saw a spot that I did not and he was actually trying to get another picture of it or more clarity. That is the worst fear.

For as bad as all of this sounds it is all just speculation. It is just the crazy stuff that goes through your mind when you are in the midst of this journey. Hopefully this morning will bring some clarity and some peace.

With hope and prayers,
Mark

Praying hard!

Okay, today is it. It will be a long day for Sydney. We are due at the hospital for the MRI at 6:30 AM. Her bone scan will be at about 2:00 PM. It is hard to believe that in less than 8 hours we will be either breathing easy or thrust back into terror. It is surreal.

I am praying and hoping - with purpose!

Dancing in the rain - backwards like everything else

Good morning! There is nothing quite like a nice warm rain to put a smile on the faces of my kiddos.

By now you may think that my children have some kind of weird fascination with changes in the weather. The last time you saw them jumping around in circles it was during the last snow. While I would never put some type of mental imbalance past my children (hereditary - not my fault), I honestly think this is one of the most wonderful things about the vision of the world through children's eyes. I am amazed whenever I get out of touch with it for a little while. It is that simple joy that just comes from living life. In this case, it was the first warm rain of the year. When was the last time you went and danced in the rain?

Yesterday we received Sydney's latest report card. I am happy to report that she has mastered nearly everything required of her kindergarten. I was both extremely pleased and a bit worried. Sydney is doing some things very well. Her math skills are really impressive. There is no doubt in my mind that the synapses are firing. She is adding and subtracting, telling time, counting money,identifying, sorting, and organizing by shapes, color, and size. She can establish patterns and compare by length, capacity and weight. She can count by 10s, 100s, 1000s, or even 1,000,000s and claims that she can count to infinity. She can even identify and model fractions. I tell you, she is a whiz. Now, what she can not do is write her numbers from 1 to 20. Isn't that odd? She can do all kinds of sophisticated (for a 6 year old) math computations correctly and gets them right 99% if the time. She can add two digit numbers. She can add a whole column of numbers together. What she can not do, however, is write the answer correctly. For example, if the answer is 3, she will get it right, however, then number will more than likely be backwards. Yes, nearly all of them and they seem to be backwards almost as often as they go forwards. Personally it drives me nuts and I don't know how to help her. I am also seeing the same pattern with her alphabet. In language as well she can do some incredible things but, once again, I will frequently catch her getting her bs and ds switched or making an s in reverse. It is odd to the point that I am wondering if we hit on one of the neurologic side effects of all of the chemo that she has been through. She has mastered such intense and difficult concepts yet she seems to get hung up on such a rudimentary task as actually writing the correct answer. I guess I can't say a whole lot. I work so fast I often skip right over whether I am using the appropriate there or their or even write or right. I am just in a rush and forget to check. Maybe Sydney's issues is actually less neurologic and maybe a bit more hereditary-logic. Regardless, we will continue to work but it does have me a bit worried.

Finally, on Monday Sydney begins another week of scans. It looks like we will need to be there so early that I probably won't have an opportunity to write. It will be a very tough day both for Sydney and ourselves. While I am hoping and praying for something will tell us that the spot on her arm is not neuroblastoma, I know that is probably unlikely to come from this scans. Unfortunately, I know it will just add to the worry. For now I am going to pray that the spot have improved. It is a long shot. But please, God, just don't let them spread.

It is my purpii.

Twerp "stuff"

Good morning. This will be a very quick update. I am running late this morning. The good news is that there is no high drama to report. It was a typical day for the twerplets. I would love to say that they were all good and wonderful but you should know by now that there is nothing typical about that. Instead they were full of all of that "stuff" that makes them so special. What is that you ask? Well, for example, this "stuff" is what makes Graham not take a nap at school because he is far too giggly. It is the same "stuff" that has him sneak into one of his teacher's cabinets at school. But the "stuff" does not stop there. This "stuff" is pervasive. It is smart. It also tells him to be very quiet and not to answer when the teacher calls his name. It is this "stuff" that makes the entire school go frantically nuts looking for Graham. Now, the good news is that eventually they would find him but I would not be honest if I did not say that the "stuff" nearly prevailed.

This is the stuff of which purpose is made.

Unclean Purpose

Good morning. Well I am happy to say that we finally have our scans scheduled for next week. On Monday we will have a MRI and a bone scan. On Thursday we will have our MIBG. It seems we still have plenty of time to get nervous before then. There is not a tremendous amount to report other than that. Yesterday was a perfectly normal and typical day - which, in my mind, is pure perfection. The kiddos went to school. Lynley and I went to work. Soon enough it was all over and time for us to rendezvous back at the house. The kiddos performed their usual stunts out in the backyard and we were eating dinner and ending the day. We did have a special treat after dinner. On occasion, after dinner we load up as a family and head out for a treat. Today it was ice cream.

Now the irony in all of this is that (a) we told him to be careful and (b) not to make a mess. This was Graham's version of not making a mess. You see, we stopped at the park to eat our ice cream because we didn't want to make a mess. We were driving in a rental car (Lynley's is being repaired) and we didn't want it to be completely destroyed. Ironically, you can not smoke or have pets in a rental car. The true irony is kids are far more destructive to a car's interior than either of those. They are mini disasters in a major way. There was little to clean him up with before we left to go back home in the car. This picture was after I had already used 4 napkins on the boy.

Isn't this what purpose is all about?

Diary Hiatus

Okay, okay! So it wasn't actually a real diary hiatus. We are in the process of moving the website to Blogger and it hasn't gone exactly perfectly. Couple that with a surprise root canal for me on Monday morning and you can just guess about how happy I was about all of this. Regardless, I have been put back together and I think we have got everything working for now. So what do I have to say for myself?

Well, first thing, I should tell you that all of the children survived the weekend - some of them even happily. Everyone made it through relatively healthy and unharmed. The only kind of shock that we received came on Saturday evening. We finally received the FISHing report for NMYC on Sydney's biopsy. After all of that work I can finally tell you this - INCONCLUSIVE. Technically this is neither good nor bad - simply annoying. It really does not mean a thing other than that they could not get any results from the sample. This is certainly better than an absolute "Yes it is disease" and only slightly more meaningful than a we could not find anything. Regardless, I will take it.

The big surprise that came yesterday was a front page article on the Lunch for Life Cookbooks in the Fort Worth section of the Fort Worth Star Telegram. I knew the story was coming but I just did not know when. Surprise, surprise. It was yesterday. The article was extremely well written and appeared to drive home the important points. I was very pleased to see the world "neuroblastoma" in caps. It was certainly there out in the open. One small step for the author, one huge step for pediatric cancer kind. It was awareness. Here is the article for your perusal.
http://www.star-telegram.com/local/story/553255.html. I am very thankful to Susan Tallant for writing such a great story. Thank you.

Well, I had best be off. It is time to play catch up to a lost day.

Purpose back in overdrive.