The Graduate

Can you believe it? We now have a certified first grader. Yesterday evening Sydney officially graduated from kindergarten. The day was jam packed with activities. First, in the morning, there was an award ceremony. Each child in the class was awarded for their various achievements throughout the year and then given an award for their personal gift to the class. As you might have imagined we did NOT win an award for perfect attendance. However, Sydney did win a couple of special awards, one of which for being a super star pupil in her computer class. See, and here you thought when I called myself a computer nerd I was just kidding. Sydney's special gift award was for compassion because she was such a compassionate little girl when it came to dealing with others. I was probably most proud of that award. There were special awards for dedication, persistence and all kinds of great personality traits but I must admit that I was particularly proud of Sydney's achievement. I can't think of a personal gift greater than compassion and it is always something that we have tried to ingrain in her. I would let her take credit for it (it being her personality trait and all) but it is clearly superior parenting. You may also note that I always won the special gift of humility.




Following the awards ceremony there was a pool party and then finally, at night, the official graduation ceremony. Now you may have heard me complain about a 2 hour cap and gown ceremony for the kindergarten class. However, I may have to change my tune a bit. They put on a show that was nothing short of incredible. There was singing and dancing. It was great entertainment. I was once again blown away with what they were able to accomplish with these young kiddos. There is simply no way my kindergarten class could have pulled it off. In fact, I would be surprised if my 5th grade class could have pulled it off. It kept us laughing and certainly kept everyone entertained. As soon as we get the video I will post it. Well, I had best be off. Another busy day lies before me.


One of my purpii has graduated. What an incredible milestone!

Another incredible milestone

Last night was a late night out for my blushing bride and I. We whooped it up and this morning the kiddos are already well ahead of us. Today is Sydney's last day of kindergarten. It will be capped off by a graduation ceremony this evening at 5:00 PM. While part of me thinks it is absolutely ridiculous for kindergartners to have a graduation ceremony with cap and gown, I have to admit that the milestone strikes me especially hard. I am amazed at how far she has come. I have always known the odds of her achieving this milestone where especially slim and I am truly grateful for the gift. Not only am I thankful for the journey of getting to this point in her life but I also so appreciative of all that she has accomplished. I feel confident to say that Sydney has been able to accomplish everything that is expected of an ordinary kindergartner. In fact, in many areas she has not only met the challenge but has greatly surpassed the standard. It is for these reasons that I am so tremendously proud. For a child that has spent 4 of the last 5 years in treatment, endured 9 high dose rounds of chemotherapy, a stem cell transplant, almost 1 full month of radiation, a year of oral chemotherapy, over 2 and a half years of painful immunotherapy and travel back and forth to a different city for treatment; the fact that she has met the challenge of completing kindergarten pales in comparison. However, it is the fact that she did it and that she did it on time that amazes me. Today the celebration for many will be about a single year - for me it will be for a lifetime.

So, while I still think it is somewhat ridiculous to have a cap and gown ceremony for the graduation of kindergarten I am still especially mindful of the incredible journey Sydney has made. No one will be prouder.

Now that is purpose!

All shook out.

The Purple Cow Shake-a-thon was a success. I want to thank everyone for coming out in support. It really does make a difference. I have not received the final tallies but I do know that before we even started we had already raised as much as we did the previous year. So the good news is: the only place we could go was up. I am so thankful to all of our friends and supporters. I had the opportunity to sit down and talk with many of you but I know that there were many I missed. I just want you to know how appreciative I am. Although it was only lunch or dinner (or for some of you lunch and dinner) Lynley and I know how many of you come out and support us at these events. We know that neuroblastoma research does not have to be your purpose but are genuinely touched would you chose to help us make a stand. Thank you.

Ainsley was also thankful that there were so many people at her birthday party. We did not bother telling her that it was not entirely about her. Unfortunately, the kid's all melted down a little bit early. If you ever wondered what the consequences might be if you started giving your 3, 4, and 6 year olds ice cream as an afternoon snack I think we have proven that it is not a very good idea. By 6:30 PM the rugrats were absolutely wasted and displaying a whole new level of ornery. I am beginning to think that sugar is kind of like alcohol. Some kiddos can handle their sugar and others, like Ainsley and Sydney, can not. They are sloppy sugar drunks that tend towards violence whereas Graham could not be more giggly. I guess you could call him a happy drunk. He will just keep giggling until he passes out.

Well, I had best be off again. I just wanted to take this opportunity to thank everyone. Today is another busy day in a seemingly unending barrage of events. Once we get through this week I am hopeful that we will be able to stop and smell the roses and to breathe a bit.

There is a continuous flow of purpose.

Home again!

Well, here I am - home again! Last week seemed like it went by in a flash but, to be honest, it did not go by quickly enough for me to see my kiddos. It is very nice to be home. My mind is still digesting all that I have seen and heard over the last week. It was an extremely productive meeting and I hope to share much of what I learned over the coming weeks. Today, however, is chock full of other activities.

For starters, today is Ainsley's 3rd birthday. Nothing gets much more important than that. We had a birthday party for her last night here at the house but in true Dungan fashion she will be spreading her celebrations out over a week. Today she will celebrate at the school and then tonight at the Purple Cow Shake-a-thon. Next weekend she will have yet another birthday party with some of her friends. I can already begin to see that this one is going to be my party animal. She is starting at such a very young age.

So, today is the official Lunch for Life Purple Cow Shake-a-thon. If you have a chance, please come on out for a good time. Believe it or not, coming out to lunch or dinner at the Purple Cow really does make a huge difference. Remember, lunch or dinner, it does not matter - just be there!

Oh, and don't forget, don't tell Ainsley it isn't for her birthday. Somehow she is under the impression that it is another party just for her.

Yes, she is a little full of herself. But, it will still make for a great party.

Today everyone gets a scoopful of purpose.

Purple Cow Shakethon Reminder!

Please remember to help support neuroblastoma research by visiting your Fort Worth, Dallas, or Plano Purple Cow restaurant between 11:00 AM and 9:00 PM on Tuesday, May 27th, 2008. Tell them you are there for Lunch for Life and they will donate a portion of your check to Lunch for Life. Invite your friends. Bring your office. There are wonderful opportunities to also win prizes and help one of our local schools - simply by eating lunch or dinner. It does not get easier than this.

If you ever wondered how you could help a family with neuroblastoma. This is exactly how. Please come share our purpose.

Absolute submersion - I am drowning in information

Wow, I am exhausted! The ANR is absolutely incredible. It has had me so jam packed with activity that I have literally not had a moment to steal away and write in my diary. Even my hours late at night and the wee ones in the morning are stolen as my mind, which should be sleeping is instead racing with facts and figures. Although I was incredibly tired, I recall being awake most of the night as my mine plotted, planned, and absorbed. I only hope that today I am able to focus and take in as much as I would like to.

Yesterday was as full as I had said it would be. For me, the morning was the most difficult way to start. The plenary session was all basic science and the oral presentations that would follow would all be the same. It was interesting and meaningful but requires intense concentration (for me at least) It is hard to describe the presentations to someone that has not witnessed them before. The best way that I can describe it is a continuous infusion of acronyms intermixed with a steady barrage of complex terms like upregulated, suppresssion, homozygosity, replication, validation, pre-amplification, multivariate, resequencing, penetrance, putative, and abrogated; but to name a few. I find myself straining to ensure that I walk out of the discussion with my grasp on the correct interpretation of each nugget of information. The basic science is where we get our first insight and clues into every aspect of neuroblastoma research. This is how we understand how cells communicate, how genes influence behaviors and, most importantly, how we interpret it for application into the bigger picture of how we can begin to start saving children. The morning was filled with new ideas on how cells die and how we may take advantage of newly discovered genes and receptors to hopefully put an end to this horrible disease. I could go into detail but I fear at this point we would all be bored.

Lunch was quite ironic. I sat next to two researchers from the NCI. It was ironic in that I was sitting next to Amy McKee who gave an excellent educational lecture the day before on the neuroblastoma stem cell. It was more ironic that I was so entirely intrigued by the the body of research that she had completed. It was further ironic that I was so incredibly impressed with the findings of her study. The study was one of many which we had decided not to fund the year before. It was not that we did not want to but the there was a limitation of funds available and a talented pool of competition. I wish we would have been able to fund her work but I was so happy that she did find the funds. Regardless, we both found it rather funny and it was nice to meet face to face. I can ensure you that this is one brilliant junior investigator with an incredible mind. I truly believe she will be a large part of the future of neuroblastoma. And I can tell you that I will certainly look for ways to support her work in the future.

The afternoon is when everything really started to come alive for me. I can think of several new revelations for treatment and research but more importantly whole new themes really began to emerge. There are incredible plans. It all began with what everyone will most assuredly think on the surface is a huge waste of resources and time but, after further insight, will come to see the incredible step it was for us as parents of children with neuroblastoma. The lecture was on the new International Neuroblastoma Risk Group (INRG) classification system. This is the system that dictates what type of therapy your child receives for their disease. I.e. - is your child stage I, II, III, IV. Are you low risk, intermediate, high, or ultra high risk. I know, many of you are thinking - "Mark, you have got to be kidding me. My child is stage IV - high risk. Who cares about the difference between Stage I and II or III and IVs? 40% of kids are high risk and most are dying. Why are we wasting time and resources discussing these semantics? How can this be important?" Well here is why! We are doing it because the entire world is agreeing to use a system which actually includes 17 different classifications. This means that we will not only be able to stratify risk more specifically but that we will be able to compare patients across the world - something we have never been able to do before. In the past every one classified kids differently. This was dependant upon which country you were treated in, which system you were apart of and many other factors. This made large international comparisons murky and downright impossible to evaluate one study for high risk kids in Europe to a study in the US, or one from Australia to one in Asia. In other words, a higher percentage of kids may be surviving from a high risk study in Japan than in another one in the US but it may have been due to the fact that the study in Japan included kids with a lower risk than those it the US. Maybe, and probably, more kids were surviving because they were more likely to survive in the first place. Traditionally, everyone has had to repeat studies and work to see how trials and research questions affected their own risk groups. This new collaboration creates a new world order, one in which kids from across the world can be compared directly. Answers can now be found with one study and comparisons made internationally. This opens the world up to tremendous opportunities for collaboration and means that we can answer questions 10 times faster. It goes beyond just this finding. There are now rules for imaging and molecular diagnostics so that everyone is on the same playing field. Furthermore genetic aberrations are now directly comparable and our risk system will be defined by these instead of age and location of the disease. Much more quickly we will be able to stratify risk groups by internationlly recognized genetic markers. Hopefully we will stratify children by a new set of risk categories that can actually separate the kids by the targeted therapies that they need. In other words, stage IV Johnny will receive a high risk treatment protocol that is tailored to kids with disease that have the same genetic characteristics as his own. In the future we will be able to keep kids from being exposed to drugs and toxic therapies that we will know beforehand will not work on their disease. I.e. no Cisplatin for you. You have loss of 1p36. Your tumor won't respond. We have found kids that have a loss of 1p36 do better on this regimen which includes Topotecan. You see, simply be stratifying kids and collecting information on a global basis we will be able to compare what we never have been able to before. And, in much greater numbers. We will be able to tailor specific treatments at the specific disease characteristics that many of our children share. Haven't you always wanted to know whether a drug worked on a child that was like your own? This system will get us there!

Wow, that was a lot to get out and I have not even gotten past the first 30 minutes following lunch. I haven't even skimmed the bulk of what I learned yesterday afternoon about the stuff that I know will excite so many. The rest of the afternoon was poster presentations and our favorite, translational research - turning all of this basic science into applicable treatments for our children. Yes, bringing all of these medical findings to our kids in the beds- applying the science. To be honest, I could write 100 pages and not even skim the surface of what I saw yesterday. It will not come out this morning. It will take days and weeks of writing and processing. Hopefully later I will be able to go into detail on some of the most exciting discoveries that we saw. There were many. It is incredible. Today we learn if a complete resection really matters and delve into the science of so many burgeoning new treatments. I am excited. Can you tell?

This is purpose overload.

The Neuroblastoma Stem Cell?

Well, for those of you interested in hearing clever Sydney, Graham, and Ainsley stories you are probably going to be terribly disappointed this week. However, if you are interested in the absolute cutting edge of neuroblastoma research or the adventures of little David then this is going to be right up your alley. I am hoping to give other parents and families a good overview of the research that I am seeing. You certainly won't hear it all. There is simply too much. In fact, if I participate in everything that I physically can I will still only be able to see about half of the presentations. In other words, there is a ton that is happening concurrently.

I guess the best place to start is with where I am. The convention is being held at the Makuhari Messe International Conference Hall in Chiba, Japan. It is probably the largest convention center that I have eve witnessed. There are about 15 conference halls in 3 different buildings. Each of this buildings dwarfs the professional baseball stadium next door - by about 5 times. I have not heard the numbers yet but I assume that there are probably greater than about 500 people participating. Sitting in the lobby I saw the faces of all of those people that we have seen gracing the top of just about every neuroblastoma medical article ever written. Sure, I have seen all of the usual suspects from the states - Maris, Cohn, Matthay, Seeger, Reynolds, Twist, Parks (to name a few) - but I am also seeing many of the international names as well. The truly neat thing about this conference compared to the one that I attended in Los Angeles two years ago is the number of foreign investigators. There is a much larger population of foreign researchers at this conference. I think this is very important because we get to see much of the research - in action - that we were not aware of in the states. This means many more opportunities for collaboration and new connections. Frankly, that is what excites me. You see, the North American group is pretty tight nit and even they do not know all of what is happening in a similar lab across the state - much less the country. Now look at the rest of the world. With language and physical barriers it is rare that this group gets to meet, discuss and, hopefully, have revelations together.

So, this afternoon I sit in a workshop on "The Neuroblastoma Stem Cell?" (3 hours worth). This workshop is aimed at presenting all of the work that has been done on neuroblastoma stem cells all over the world to try and discover what we really know. Do they exist? Does it matter if we do? What do we know that we can take advantage of?

David Kaplin from Sick Kids in Toronto has given the overview. The reason that everyone thinks neuroblastoma stem cells are so important is because of the whole theory of how neuroblastoma tumor cells come to be, grow, and more importantly - how they die.. What they have discovered is that there are indeed tumor initiating cells. This subset of cells is really good at growing neuroblastoma. Believe it or not - many neuroblastoma cells don't have this characteristic. While there are a lot of neuroblastoma cells there is actually a smaller subset that seems to be doing all of the multiplying. For example, you can put regular neuroblastoma cells into a mouse and it won't grow neuroblastoma. However, you put one of these tumor initiating cells in and they grow beautifully. While we don't know that they are true stem cells, we do know that they can grow neuroblastoma really well. So, if we can stop these cells we can keep the tumors from multiplying. Thses are the ones we have to learn to kill to prevent relapse. This is the bee hive hypothesis. You can kill all the bees you want but if you don't kill the queen the hive will keep coming back. It is only when you kill the queen that the hive will die.

Well, I had best be off. While you all are perky and chipper it is hours past my bedtime. My brain needs resting. There is much more to come.

Purpose is just that way.

I have arrived

Well, I just checked in to the hotel. It is about 6:00 PM in Japan which is roughly 4:00 AM in Fort Worth. Oh well, there will be plenty of time to sleep later. I am actually getting ready to head out to dinner with some of the people from the conference but I wanted to check in to say hello. I left yesterday morning in a pretty big rush.

Honestly, I had two major issues leaving town. First, I really was having a tough time saying good bye to the kiddos. I missed them unbelievably and I wasn't even out the door. Secondly, I was supposed to be taking this trip with David, another father of a child with neuroblastoma. David and I were good friends and I was really looking forward to the trip. Plus, I was going to count on him to keep me out of trouble. Unfortunately, In a last minute snafu he was not able to make it on the trip. That left me all by my lonesome.

Well, almost. I then met little David and little David agreed to go with me to keep me company and out of trouble when bi David could not. Truth be known little David and I have had a blast. When I get a chance I will catch you up on some of our adventures. He got a little drunk on the plane. What can you say. Good ol' David!

Unfortunately, now I have to run. It is time for dinner with little David so we can get fueled up for purpose. We have a lot to learn.

ANR Away

I am off to the Advances in Neuroblastoma Research congress in Japan. I will hopefully be able to provide updates daily.

I will miss my kiddos terribly.

Purpose calls.

A letter from Mommy and Daddy

Dear Sydney,

We are writing this letter to tell you how much we love you, and how very much you mean to us. One of the best days of our lives was the day that you were born. As you know, Daddy was so very excited that you were about to be born that he left the house with one black shoe on and one brown.

We had picked your name out weeks before. We picked Sydney as your first name, from Sydney Australia where we spent such a wonderful honeymoon, and your middle name Elleen, for your Great Grandmother. It was such an exciting time. We had no idea how many special ways you would bless our lives.

In just a few weeks you will be seven years old. You are becoming such a big girl. We have noticed the ways you help with your brother and sister, the ways that you care for others, and how strong and patient you are with all the many doctor's visits, pokes, and tests you go through. You have such strength and courage. We couldn't be prouder.

We also want to tell you how much we enjoy spending time with you, reading together, playing games together, taking walks and traveling together. You are truly a joy to be around. We cherish every minute that we have with you. In fact, we cherish all our moments more because you have been in our lives.

Mommy and Daddy have so many hopes for you. We hope that you continue to grow your caring for others, your optimism, and we hope that all of your dreams can come true. We will continue to do everything we can to make sure you have the opportunities to make that happen. We believe in you, and we believe that with hope, love, and perseverance, anything is possible. Our greatest hope for you is, as Jonathan Swift wrote, "May you live all the days of your life".
Being your parents has been one of the greatest gifts. You help remind us every day that life is so special, and that every day is a blessing. You are so special.

We found this quote that reminds us of you by Elisabeth Guizot:
"There is in every true woman's heart a spark of heavenly fire, which lies dormant in the broad daylight of prosperity, but which kindles up, and beams and blazes in the dark hour of adversity."

You are the spark.

Love,
Mommy and Daddy

Reading Fee

A couple of times a year I get all full of myself and tell everyone that reads my diary that there is indeed a price to pay for putting up with my nonsense. It is kind of a backwards sales pitch. Today I am asking everyone to mark their calendars for Tuesday, May 27, 2008. You may have noticed the information on the Purple Cow Shake-a-thon that I posted the other day. Well, this is a real easy way to participate and make a big difference. It is simple. On that Tuesday, anytime between 11:00 AM and 9:00 PM, I am asking you to visit one of the Purple Cow restaurant locations in Fort Worth, Dallas, or Plano to eat lunch, dinner, or to just have a shake. Simply tell them that you are there for "lunch for life" and they will donate a portion of your meal to the CNCF. It is that simple. It may sound like it is not that big of deal and it may sound like it is not that important, but it truly is. It is free for you but means a tremendous amount to us and the dollars really do add up. So, if you can, buy lunch, take out your office, or order in. Do whatever you can to get as many people eating lunch or dinner at the Purple Cow as you possibly can.

The other neat thing about this year's Lunch for Life Purple Cow Shake-a-thon is that there is some truly cool stuff that will also be happening. For example, each store has designated a school. In Fort Worth it is Southwest Christian School. In Dallas it is Christ the King Catholic School. In Plano it is Prestonwood Academy. Now, whichever store sells the most milkshakes will win their designated school a brand new computer. So, even if you don't think kids with cancer are important, how can you pass up having a milkshake and a meal to help out a local school. It is a win/win situation. Please buy your office a shake on May 27th, 2008.

For people that visit the Purple Cow restaurant there will also be opportunities to win a brand spanking new Apple iPod. Each store will be giving away prizes and I can tell you first hand that one of those prizes is an Apple iPod Classic and another is an Apple iPod nano. Just think you could be groovin' to your own brand new tunes just for doing what you do every day. Eating lunch or dinner.

Finally, another way you can participate is to sponsor Sydney or one of the other kids for the shake-a-thon. Sydney is collecting donations for each shake that is served at her Purple Cow restaurant on May 27th. Of course she is also accepting flat donations. So, if you can't be there, sponsor her a dime for every shake sold or just pledge a flat $10 or $20. To show you how easy it is you can send your pledges directly to me via email - mdungan@lunchforlife.org. You don't even have to get up from the computer. Simply tell me how much you pledge for the shake-a-thon and then go to http://www.lunchforlife.org/ and donate that amount. How easy is that?

Finally, if you want your very own Lunch for Life Purple Cow Shake-a-thon t-shirt please buy one. I just ordered 300 and I certainly don't want to be saddled with all of them. Everybody needs clothes so don't miss out on your opportunity to own this limited edition t-shirt. It is perfect for wearing everyday. If you are a private person and don't want everyone knowing that you support childhood cancer research you can even wear it in the privacy of your own home or while doing work in the backyard. It is the perfect compliment to any body. Trust me, this is a shirt you need and one that I don't need 300 of. They will be $15.00 a piece with over $10.00 going to neuroblastoma research and educational initiatives.

See, I told you this would be fun. Please come by and support us on May 27th, 2008. It really will mean the world. It is the perfect day to take a friend out to dinner, your child's class out for a snack, or your office out to lunch.

Oh, and yeah, it is also Ainsley's birthday! Come and enjoy the party. She, Sydney, and twerp #2 will all be making live appearances all throughout the evening. You just can't beat that. Come have a blast and make a difference.

On May 27th, there will be purpose for all.

Not so fresh feeling

Good morning! Well, I am happy to report that everything seems to be going well. The kiddos all appear to be operating within normal limits. Sydney continues to be less and less itchy and I am fairly happy to report that I have not seen any new spots arise. She has complained about sporadic aches and pains but I am curious as to whether that may be, in fact, a ploy to get more attention. I can't even remember all of the places that she says that she has hurt - her back, her legs, all over, you name it. I would be more concerned but I guess I have learned to temper my worry. The threshold on the indicator is set a bit higher than it used to be. I am just trying to enjoy our lives for now. Trust me, I could worry about all of this and especially the spot within her arm but I just don't think it would do any of us a bit of good. The truth is I can't do anymore to prove or disprove it is neuroblastoma so why worry about it. It won't do Sydney any good, it won't do our family any good, and it certainly won't do me any good.

Graham is doing pretty well too. He certainly is an odd little dude. He is taking after his father much more than I would like. Last night, I was having a normal conversation with the boy just lounging away in Lynley's new Mother's Day lawn furniture. We were sitting there fairly quietly when he opened up with this.

(silence)
Twerp #2: "Daddy?"
Me: "Yes, Grahamers."
Twerp #2: "I went poopoo today."
Me: "Well that is just dandy, Dudester."
Twerp #2: "You know, sometimes when you wipe your hiney it doesn't get all of the poopoo off."
Me: "hm. hmm."
Twerp #2: "Sometimes I have to use lots and lots of toilet paper."
Me: "uh, huh"
Twerp #2: "But then it gets stuck and makes the toilet explode. So,I flush the toilet after I go poopoo but before I use toilet paper."
Me: "That's a good idea. Thanks for sharing Dudely."
(Silence returned)

I just don't know where this stuff comes from. (Well that stuff I do. I mean his comments.) I just don't get it. I guess this is just a little boy's way of communicating. This must just be the boy version of the "not so fresh feeling" talk that we keep hearing so much about on television. I really don't know but there just seems to be a whole lot of sharing going on. I still have not figured out how I feel about all of this.

Finally, Ainsley. What can I say about Ainsley? She continues to be the tootinest twerp of the bunch. She is full of sugar (and vinegar). I have never seen such a combination. She can certainly reel you in with that sweetness but don't get to comfortable. She is also the most likely to clobber you while you are not looking. Daily I am amazed by her prowess. Even after all we have endured, I think she may just be my greatest challenge.

Well I had best be off. I was up at 4 and I am still yet to get to the work that I spent all night thinking about. This morning seems to be lost in an email abyss.

Purpose abounds.

Purple Cow Lunch for Life Shake-a-thon

Tuesday, May 27th, 2008
11:00 AM – 9:00 PM

DALLAS
Purple Cow Restaurant
Preston Royal Shopping Center
110 Preston Royal
Dallas, TX 75230

PLANO
Purple Cow Restaurant
Lakeside Market Shopping Center
5809 Preston Rd.
Plano, TX 75093

FORT WORTH
Purple Cow Restaurant
Chapel Hill Shopping Center
4601 W. Freeway
Ft. Worth, TX 76107

HELP CURE CANCER!
On May 27, 2008, the Purple Cow Restaurants will be donating 15% of every item sold to Lunch for Life and the Children’s Neuroblastoma Cancer Foundation to help fund a cure for neuroblastoma.

Just stop by to:

• Eat lunch or dinner.
  
• Order a shake and help a local school win a new computer.
  
• Win an Apple iPod or one of several prizes.


• Buy a t-shirt.


• Most importantly, give kids with cancer a voice!
  
  

Purple Cow Shake-a-thon flyer 2008
Purple Cow Shake-a-thon Participant Kit
Purple Cow Shake-a-thon Business Cards - Front
Purple Cow Shake-a-thon Business Cards - Back

It's official

The news is in. The doctor believes that Sydney has the chicken pox. There is good news, however. She is no longer contagious and they do not seem to be spreading any further. This was by far one of the strangest presentations of chicken pox that anyone has seen. It is for this reason I still find the diagnosis in doubt. She only has a couple of pox that actually looked like the chicken pox. The others really do look like bug bites. A week and a half a go you may recall my talking about the 3 bumps on her head. Three days later three or four more bumps appeared on her stomach and chest. Over the next few days a few more would begin to appear on her arms. That is what led us to last Friday morning. It was just very strange. Regardless, the doctor said that if they were the chicken pox she had indeed reached the point that she was no longer contagious. This was great news as Sydney got to return to school and spend the rest of the weekend out and about. She was not itchy and seemed to have a great weekend.

Mother's Day also went off without a hitch. Each of the kids each made something for Lynley at school. Ainsley gave her a decorated pot and a plant. Graham gave her a decorated birdhouse. Sydney gave her a beach bag that had been decorated with puff paint. The kids and I had ordered a handmade silver necklace with their names inscribed on it. It is yet to arrive. Don't get all huffy and puffy on my ill preparedness. This should be a lecture for all mother's out there. If you want a necklace for Mother's Day that takes 3 weeks to make you have to start giving hints more than a week before the big day. Just letting you know.

Any way, we spent most of the weekend preparing for Mother's Day. That was a good thing because I think Lynley truly had a perfect day. We decided to eat out on Saturday night to avoid the Mother's Day rush. Lynley chose Macaroni Grill or "the Macaroni and cheese on the Grill" as the kiddos call it. We ate a little bit early as I had to be at the rodeo to help set up the booth for the CNCF and help to pass out materials later that night. In all due honesty, I think Lynley was just looking for a way to spread out the big day. In fact, she would keep us busy running all day on Sunday. The morning we spent shopping at Lowe's and Garden Ridge. During the afternoon we spent our time trudging in the back yard and installing all of her new acquisitions. There were new plants and patio furniture and a myriad of new outside honey dos to accomplish. The kids had a great time playing in a large box (from the patio furniture) while I slaved away. That evening I would cook steaks on the grill.

I can't wait until father's day.

Well, I must get back to work. There is much to be done before I leave on my trip to Japan next week.

Purpose moves on.

Don't call CPS just yet.

I know, I know. By this point in time you would certainly think that we would know if Sydney had the chicken pox. In fact, it is probably some kind of neglect that we do not. Not to worry, we have tried. We just have not been able to get her in to see the doctor. This morning at 9:30 AM, however, all of that will change. Just so you know, Lynley is still sure and I am still skeptical. Go figure! I have not completely written off the fact that she is bug-alicious. Yes, I know. Bug bites aren't contagious. Yes, I know, they do not seem to multiply. Yes, I know they don't appear and then scab over a few days later. Yes, I know, they don't start on the torso and move their way out to the arms and hands. Look, I just have never had the chicken pox and I don't want them. I don't want to have to give up my trip to Japan for the ANR conference in a week. So, I am just going to believe that they do not exist. Accept it and move on.

Wow, was that an interesting look into my psyche. Regardless, we don't know yet and I am just fine with that.

Other than that. Well, I am too darn busy to talk about it. I know I always say this, but I am. I can't see straight. I don't know the last time I had so much going on.

So, with that, I am off to my purpose.

Cluelessly on the road

Well, unfortunately there is not going to be much of an update today. This morning I have to take DeeDee to the airport at about 5:30 AM. So, that will carve out about 2 hours of my morning. What I can tell you is that we are no closer to knowing whether Sydney has chicken pox or what a belly button snatcher is. There you go. Now you are in the dark as much as I am - literally.

Purpose rolls on.

The sneaky scratcher. Is it Twerp Pox!?!?

Lynley has another diagnosis. This time I sincerely hope she is wrong but she has a pretty good track record. Last week some bumps appeared on Sydney's head. You may remember the great debate - I thought they were buggish and Lynley was quite sure they were something less benign. Dr. Debbie took a look at them and deemed them insect bites. Of course, I gloated. You see, I may know a lot about neuroblastoma and its treatment but I am a complete idiot when it comes to diagnosing or treating anything else. I have no medical training. That is were Lynley is the more capable one. I usually defer to her. She is almost always right on the money. She is uncanny that way. I stick to neuroblastoma. That, I at least understand.

So, over the weekend, these bumps multiplied. They also appear on her torso and her hands. When I first noticed them on her belly on Sunday I noticed that they were really inflamed, almost like a welt. I had assumed that they were more insect bites and that she was scratching them. On Monday they started to appear on the back of her hands. Now she is covered with 20 or so red bumps - most of which have scabbed over in the middle. The bumps are itchy and the biggest problem seems to be simply keep her from going after herself. Sydney consciously knows not to scratch but simply cannot stand it. She has begun to sneak off away from us just to scratch. Caladryl seems to do the trick to reduce the itchiness but it does not seem to last very long. Sure enough after a while we will notice that Sydney has snuck off to scratch were she will not get caught.

So, Lynley has made the official diagnosis - chicken pox. She seems pretty sure of herself to. Myself? Well, I don't know and I have never had chicken pox so I am staying far away from Sydney. Until we know more she and I have delighted in across the room hugs and air kisses at night. We went through this scare last year and Sydney remembers all too well. Daddy can't get chicken pox. Today we will have to find out more. I imagine that we will need to sneak Sydney back in to see Dr. Debbie. I, on the other hand, get to go back to the dentist for more fun. I am just hoping that this will be my last trip for awhile.

Graham just came down stairs and asked for me to turn on the television. I told him that I could not find the remote. He suggested that maybe the belly button snatcher took it. Wow! Too funny! I can't wait to hear about this. I did not even know that there was a belly button snatcher.

A day of purpose awaits.

Voice

Lately it seems that I have some type of neuroblastoma function every couple of days. I can't say that I am to blame for all of them but I can tell you that I am extremely happy about it. Considering the fact that many of us never even heard about the disease before Sydney or one of our other children was struck with it, I think we are making huge strides. I know I am right in the middle of it and am therefore surrounded but I am really pleased with the amount of time that I am hearing the "n" word. There is no doubt that we are making progress. Over the last five years I have gone from attending a neuroblastoma event once a year to being to a different one at least once a week. That is how we get the word out. That is how we give the children voice.

A few weeks ago I heard a very impassioned (although long) speech about giving our children voice. It was given by another mother of a child with neuroblastoma. Frankly, it was one of the better speeches that I have heard in quite a long time and, without a doubt, the best I have ever heard that mentioned the word neuroblastoma. In fact, I was disappointed it was not my own. The speech has totally reinvigorated me. It is not that I do not love fighting for children everyday. I genuinely love to get up and meet this monster head on everyday to fight. It drives me. It is how I breathe. It is extremely rewarding because every time we take a step forward I know we are getting one step closer to a day when another child will not walk into this world. I certainly had the passion for the work before but I was missing something. I was going through the motions and was working hard but I was missing some ingredient that I could not put my finger on. This speech gave me that.

To this day I can not put my finger on what was missing but I can tell you that my mind is working like it never has before and my passion for what I do has grown ten-fold. So when I have weeks like this that seem jam packed with interviews, meetings, and engagements I can barely contain my incredible excitement. I know I will have another opportunity to make a difference. I am literally experiencing a revolution in my head. I am so thankful for the opportunity to get to do what I do everyday. As nasty as the disease is and as much as I hate that my daughter has it in many ways I am the luckiest man in the world.

Thanks Ann, for the reinvigoration. I know what you said but I don't really know why it hit home so much or why it has affected me so strongly. Words are powerful. Thanks for giving me my voice.

My purpose is louder than ever.

Another whirlwind weekend

Good morning! Yikes, Monday sure snuck up on me quickly. I guess that is the price I take with these quick trips to Houston. The good news about my trip to Houston was that the 2nd Annual Amazing Grace Golf Tournament was a complete success. There were several neuroblastoma families at the event and all had a great time. All in all, I think they raised about $40,000.00. It was a good, good day for neuroblastoma. I am glad that it was so good because, in reality, the money was already spent. Truth be known, it was the anticipation of this event and its success that lead us to be able to fund an extra junior investigator grant this year. That is a significant commitment because each of those grants that we fund requires $100,000.00, or $50,000.00 per year. By knowing this event was on the horizon we were able to take that next step and get the research moving forward. The ironic thing about the particular grant that was selected was that the research was also being done in Houston. So after a quick trip to the Midwest the money will be slung right back down into their neughborhood. I guess it was meant to be.

It was great to get back home and see the kiddos. They spent Saturday at Mayfest and then their weekend was jam packed with activities. Yesterday morning was all about chores and the afternoon and evening were all about birthday parties -- two in all. Dinner, a walk around the block, and sock folding got us to bed and everyone slept comfortably. Surprisingly, they are all fast asleep as I write. I guess that is evidence of a truly good weekend.

Well, I am off. I have a photo shoot this morning, followed by a conference call and a meeting of the L.O.V.E. club, a group of neuroblastoma families from Cook's. It looks like it will be another busy day.

This is the way I like purpose.

A hat trick?

Well, unfortunately your are going to get the "annoyed" version of this diary entry. I just spent the last 30 minutes drafting the perfect diary entry and then somehow it disappeared while saving. It is really pretty disappointing because it was a great entry. Now you are going to get stuck with this crappy one. Oh well, good news must go on.


So, yesterday was a trip to the dentist for Sydney. I am shocked to report that her loose tooth may have absolutely nothing to do with late effects from treatment. Sydney seems to have a condition known as tongue thrust. For all of you tooth nerds out there, it is Sydney's right mandibular lateral incisor (26) that seems to be of issue. For all of you regular nerds like myself, this is the tooth just to the right of the middle two teeth on the bottom. The dentist likened Sydney's tooth loosening to a fence post. When you put a fence post in the ground it is very firm but, over time, as it is rocked back and forth, it eventually loosens. Although you probably won't be able to pull it out, it will just become looser and looser. The same affect is happening in Sydney's mouth. Every time she swallows her tongue is thrusting against her bottom teeth and this pressure is loosening her teeth. The tongue is a very strong muscle. Normally, we place our tongues on the roof of our mouth when we swallow but, somehow, Sydney has learned to do it by placing her tongue against her lower teeth. So, what do we do?

Well, as it turns out there are actually dental appliances that can be installed in her mouth to help correct this behavior. Unfortunately, these can be uncomfortable, can cause abrasions on the tongue and can cause speech issues. None of this sounds fun for Sydney. In the end, we elected to "train" Sydney to swallow differently. Believe it or not there are whole programs on tongue thrust and over the next 3 months we will take her through a series of exercises designed to teach her to swallow differently. Hopefully, this will alleviate the issue.

So, there you have it. Another benign ending to a potentially malignant situation. This completes our hat trick of auspiciousness.

Now, you know I would not have left without pestering the dentist with some hard hitting questions. Does this really mean that we can rule out late effects? Could this actually be caused by a malformed tooth? Could we be dealing with some kind of necrosis instead? His answer was that this was all still possible. However, he was leaning towards a more benign cause simply because she is not showing signs of other problems that would be consistent with these other maladies. Her teeth seem to be in good condition and her gums are healthy as well. This issue seems to be localized and there do not seem to be any other contributing factors. For the time being we will work to correct the issue we know we have and hope that it fixes loose tooth.

Well, I had best be off. Now that I have written this entry twice I am now further behind. Plus, if I am being totally honest, I am very excited to get back to working on some projects for the CNCF. I am doing some very, very cool things. Additionally I have a day full of meetings and tonight I will be driving to Houston for the 2nd Annual Amazing Grace Golf Tournament benefiting the CNCF.

I have purpose plastered all over the walls today.

Twofer of good news

We struck official ear infection. After a trip to see our dear Dr. Debbie the girls' diagnosis was confirmed. Ainsley has an ear infection in her left ear. She is now on Augmentin and, I am quite sure, well on our way to a cure (these curable diseases sure are fun) Regardless, I could not be happier. It looks like Ainsley's demanding moodiness and constant upset is less a sign of bad parenting and, in fact, completely attributable to the infection. She is sick physically, not mentally. Can't blame this one on me. I take special enjoyment from that because most things around the house can be blamed on me.

While at Dr. Debbie's I talked Dr. Debbie into settling our disagreement regarding the bumps on Sydney's head. She confirmed my diagnosis - bugs, not nasty neuroblastoma. I was pleased. This was a twofer of good news. I elected not to push my luck any further. I wanted to save the rest of my good news for Sydney's dentist appointment today to see if we could pull off a hat trick. I am not anticipating good news but I can certainly hope for it at least.

Dudely is doing superbly. In fact, he is on the couch with me now as I type. He and I are fighting for leg space on the middle pillow while he watches (of all things) SpongeBob. He is a big fan of Tivo. I asked him if he would like to add anything to my diary entry. He said no (with a smile). There you have it. I just don't know where the boy got his shyness. I think I will blame SpongeBob for sucking out his confidence.

Well, I had best be off. There is much to do and the rugrats are rustling.

Purpose plows on.