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.