Friday, January 30, 2009

Zoo cancelled, purpose not

Good morning! Well, yesterday did not turn out much like I had planned. By the time I had dropped off all of the kids at school, Ainsley's teacher called to tell me that the trip to the zoo was cancelled due to weather. I was torn. I really did not want to visit the zoo with temperatures in the 30s but I really was looking forward to spending some quality kiddo time. I had worked over the weekend and almost 10 hours a day, even skipping the joy of playing in the snow and ice with my kiddos on a snow day so that I would get to spend some time with Ainsley. I felt like I ate all my dinner and we were all out of dessert. Oh well, I will have to make it up to them (and to myself) once I get back from this meeting in Chicago.

The good news is that I sit in a familiar place on our couch with Ainsley and a six inch stuffed Dora the Explorer as I type away and "they" watch Mickey Mouse Playhouse on the tube.

My life is pretty good.

Oooh! Ooooh! Oh! Funny moment that needs to be remembered. Last night we were sitting around the table finishing dinner. As usual the kiddos were still fighting to clean the lasst bites off of their plates. I am happy to say that Sydney, as usual, finished all of her vegetables. She was hemming and hawing about how she was too full to finish the 5 bites of shrimp that she had on her plate. The others of course began doing the same thing. They, though, were complaining about eating their vegetables and quite sure they would die from over eating if they ate a single carrot more. All of a sudden I saw a movement out of the corner of my eye. Lynley saw the same thing and we both looked at Sydney. She had a tremendously guilty look on her face and immediately blurted out "What? I wasn't feeding Norman under the table!" Lylney and I almost choked on our drinks. We had absolutely no idea what she had been doing under the table. It was apparent that this is exaclty what she was doing with her shrimp. I don't think either one of us had ever witnessed Sydney in such a bold and obvious guilty lie. I think the funniest thing is that neither Lynley or I would have even suspected she was feeding her food to Norman. It took Lynley and I a few moments to regain our composure and stop laughing. Kids are great aren't they, especially when they are self tattling.

So, this morning I travel to Chicago for a CNCF board meeting. I am not particularly looking forward to the weather but I am looking forward to being heard. It should not come as a surprise that I have a lot to say. There is a lot of research that needs funding. We need to buck up, plow through though this recession, and get the research engine chugging.

Now is the time for action.

Purpose is in gear.

Thursday, January 29, 2009

Twerps on ice go back to school

Good morning! Well, I am sure that Sydney and Graham would be ecstatic to let you know that their school eventually relented. As of 6:30 AM yesterday morning they called off school. I tried to convince them that it was due to my diary entry but at 4 and 7 years of age they are already too old to fall for many of Daddy's shenanigans. They all had a great day. They even took to creating dog sleds out of cookie sheets and racing down the street.

Unfortunately, I relegated myself to the computer. It was a busy day of writing and focusing my efforts on a plan to keep research moving through the recession. It was a good exercise and I have learned a lot. Bottom line, it will require more effort and work to just maintain what we have - much less move things forward.

Today it is back to school for everyone. I worked so hard yesterday that today I get to play a bit of hooky and take Ainsley's class to the zoo. I am not sure how prepared I am for dealing with some 30 kids age 4 and under but I know I will have a great time with Ainsley. Be on the lookout for pictures on flickr and facebook.

Well, I had best be off. Although I woke up at 3:15 AM this morning there is still a mountain of work to get through before my morning of fun.

There is purpose before my purpose today.

Wednesday, January 28, 2009

The Ice Wars

Well, yesterday started off as a bit of a disappointment for the gaggle. We watched and watched and watched the news but their schools never came up on the big screen. Yes, they were forced to go to school. However, at about 11:30 I received a phone call from the school and, joy of joys, the school was to be let out early. I quickly grabbed my keys and headed out the door. The kids were ecstatic to be home. I, on the other hand, still had a mountain of work to get through. Ainsley slept away the afternoon and I have to give the other kiddos credit. They played nicely and quietly together. Although I was a bit jealous I could not play with them, we all had a pretty productive afternoon. I got some work done and, in the meantime, Sydney built a two foot working carousel out of k'nex. Pretty impressive , huh?

Today will be a day without any school for Ainsley. She is taking a jewish day in observance of ice. On the other hand, we Christians must not be fully committed to our observance of ice as Southwest Christian School will be opening at 10:00 AM. The University of North Texas Health Science Center is closed today so Lynley is not required at the office. Somehow, though, given her dedication, I am quite sure that she will end up risking life and limb to make it to the office. I, on the other hand, work from home. So, I am plumb out of excuses. My office remains open. The trick will be to see how a morning reenactment of the ice religious war will effect my ability to get work done.

After working roughly 14 hours over last weekend and expecting to be meeting all this weekend in Chicago, I am guessing that I can get away with a few hours of twerp time.

Purpose comes in many forms.

Tuesday, January 27, 2009

The success of failure

Well, I had better hurry up and get this entry out. The atmosphere around our house is electric. They can sense school closings due to ice and they are very, very excited. In the same sense, I am actually a little bit scared.

The kiddos had a great weekend and have slid into the week just fine. Last night was another night of Tae Kwon Do and the kids are really adjusting well. I am amazed at how much they have improved in the few short weeks since they began. At this rate they are destined to take over the universe by mid-April. You laugh? Not me!

Graham is a natural but, at this point, I am most impressed with Sydney. It is not because of her capability but more because of her ability to work through imperfection. For me, honestly, I can care less if she can ever do Tae Kwon Do with any expertise. That was never my goal. Besides, she has enough of her mother in her that I am not worried of anyone ever taking advantage of her. For me, the measurement stick for Sydney is simply in participating. It is building confidence. For Sydney there is no fear of being hit. Her fear is looking the fool. She needs to learn that (a) everyone makes mistakes, (b) that you must fail to succeed, and (c) that if she tries hard enough she can accomplish anything she wants to. She needs successes. So far, it looks very much like that she is succeeding in learning these very important lessons.

Still, I am continually amazed that someone that has endured all that she has can possibly lack self confidence.

She just needs a good shot of purpose.

Monday, January 26, 2009

A new bailout

Fundraising is a necessary evil. Everybody that knows me, knows that it is one of my least favorite things to do. I would much rather spend my time with my nose in the research, on the phone with an investigator, or spending time with a family that has a child with neuroblastoma. But, asking for money, well it just isn't my favorite thing to do. After all, I created a fundraiser that was entirely about not asking for money. Lunch for Life is about asking for lunch - one lunch - and that I can do.

Regardless, as the economy has turned it has become increasingly important that I focus my time concentrating on fundraising. I have become a student of the economy and its impact on non profit fundraising. I have learned some incredibly interesting things and I feel more and more confident everyday that childhood cancer non profits aren't going to be washed off of the face of the earth. In fact, I can make some pretty good arguments that, with the right strategy, non profits in our segment could actually see some growth. However, at the very best, we will still need much, much more. Regardless, all of this studying and researching has really got me thinking as I watch the news.

There are all of these talks about bailouts. We bailout banks and the auto industry. I am not really sure how those have helped the economy but I am quite sure that it has helped many of the employees that work for those companies. Saving jobs is a good thing. Bottom line though, I haven't seen confidence restored and I haven't seen credit markets loosening much. Obama is talking about a new bailout package which appears to be focused on putting people back to work on government projects. This means fixing roads and infrastructure. All in all, I don't disagree with this strategy. It gets people back to work. It puts money in people's pockets. It gets people spending. Eventually, I can see how it would get everything working again. I can see how it can have value.

So, here is my thought. If the government is looking at ways how it can protect and improve American assets with the byproduct of improving the economy, why don't we work on one of our nation's biggest problems and protect one of its greatest assets to create the same effect.

Childhood cancer is the number one disease killer of children in the United States. It is often said that children are our greatest asset and our greatest hope for the future. While we invest billions on roads (and hopefully schools) why don't we also invest a billion or two into solving the greatest problem of our greatest asset. More research funding would help to build more medical infrastructure. It would put people to work at all levels and in many industries. Most importantly, it would help save our greatest asset and hope for the future. It could certainly help as much as new roads and new government. In fact, I would argue that it would help even more.

Why not?

Doesn't this make sense?

Why aren't we advocating for something like this?

Purpose is always running through my mind.

Friday, January 23, 2009

I can see the future

Good morning. Once again, you will find me happy to report that the kiddos have continued to have a great week. Graham is yet to take off his boots. However, I have been quiet pleased to say that he has favored pants (instead of shorts) as a part of his coordinated outfit. Sydney has had a good week as well. Yesterday they celebrated her half birthday at school. I forgot to take cookies. Aren't I a great dad? Look, I have 3 kids. I have a hard enough time remembering one birthday a year for them, much less two. The good news is that her teacher, Mrs. Rogers, saved the day. She was able to find some replacements. All in all, Sydney would tell me she had one of the best days in memory. Tonight she spends the night at one of her friends houses. It ought to be a great weekend.

Ainsley remains, well, tootiful. Is that a word? Well, what I am trying to say is that she remains a toot. She is a twerp extraordinaire. You know, I have often joked how bad a new she would grow up and be. Some have heard me even say such things as I feared the reality of her standing on bar stools in a bikini doing shots of tequila in her teens. I always said this half jokingly - not really expecting it to come true. It was just a dramatic way of getting my point across.


I don't think it is a joke anymore. I am pretty sure that is the reality I can expect. She is already a party girl and, worse yet, she is sneaky. I cannot tell you how many times I find a candy wrapper in one of the cupboards. And no, it isn't because she threw the wrapper in there. No. She climbed up onto the cabinet, reached to the top shelf, hung by one arm, stole candy, snuck back down, and hid in the cabinet while she munched away. The wrapper was left by accident. I can't tell you how many times I find her hiding under the sink in the bathroom or somewhere even more ridiculous, just munching away on a Laffy Taffy or some Sweet Tarts. Worst of all, she doesn't care about the punishment. Apparently it is all worth it for the fun.

I have to figure out what to do. I have to get in charge here.

Otherwise, I face the very real reality of my future.

My hands aren't full with her.

They are overflowing.

Purpose, take me away.

Thursday, January 22, 2009

In the Pipeline

Yesterday I posted another video from the CNCF's conference on the website. This presentation was given by Dr. Patrick Reynolds. You may remember his name as I have mentioned him often. Over the years he has become a friend and he is very definitely one of my favorite neuroblastoma researchers. He is passionate and he clearly cares about finding the cure. He has been instrumental in many of the most important discoveries in the neuroblastoma world and continues to lead many of the neuroblastoma initiatives throughout the country. I am yet to see a nook or cranny of the neuroblastoma world where his name does not come up. I am thankful that he is out there fighting for our kiddos.

Regardless, in this video he presents research and information on some of the new and emerging drugs and combinations in the war against neuroblastoma. Most notably, in this video he presents much of the important research regarding the combination of Fenretinide(4HPR) and ABT-751. I won't bore you with all of the facts as it is documented in the video. However, I will tell you that this is likely the most promising preclinical data that I have ever seen in neuroblastoma. It clearly balances efficacy (lots) with toxicity (almost none) in a way that works for kiddos. It needs to be in all of our children now!

Of course, you probably also remember that I mentioned that the protocol for this clinical trial has been written for almost two years. Unfortunately, due to a series of hold ups, it still is not in our children. The latest and most difficult hurdle has been getting Abbott to supply the drug for the trial.

They don't want to.

Isn't that nice? They are well aware of the activity in neuroblastoma. However, they have feared opening the combination trial for a variety of reasons. One of which being that it would compete with the Phase 2 ABT-751 single agent trial. Another less firm reason surrounds some speculation that they may not be caring the drug forward. Either or both of which has been frustrating beyond belief. We have tried many things - including an offer to by the drug outright. However, nothing has seemed to work. We are still in talks and I am hopeful that our latest effort will finally get this combination into kids.

We will see how it goes.

So, yes, I got myself way off track for announcing the posting of a very interesting video. None the less, it is worth a watch - especially if some of these drugs may be in your future. The video can be found here:

A pipeline of purpose today.

Wednesday, January 21, 2009

My dear sweet sensitive son

Yesterday was quite a day for the Dudester but that is not where I need to begin. I need to take you back further than that.

Enter Monday morning.

It was a chilly morning but certainly not uncomfortable with a jacket. The whole family decided to spend some time at the Fort Worth Stock Show and Rodeo on the MLK holiday. We were all in our appropriate garb - cowboy boots - well, everyone but Graham. I don't think anyone noticed but Lynley, but therein lies the problem. She decided we must buy the boy some boots. With some quick shuffling of some budgetary items I was able to eek out just enough to buy the boy some boots. Of course, you may also notice that I will not be eating out anymore this month for lunch and I will be relegated to peanut butter sandwiches. You may want to watch me for signs of salmonella. Regardless, we bought the boy some boots. He put them on and wore them out the store. Bottom-line:
  • happy twerp
  • happy wife
  • poor dad
If you know Graham at all, then you would know that he was very proud of his boots. So much so that he wore them the rest of the day and even made a plea to sleep with them. Trust me, in the realm of strange things this was simply typical.

The next day getting ready for school was as expected. He demanded to wear the boots. This demand was not in a bad way. He was kind and polite. We just knew better than to say no as it would have "bwoken his wittle heart."

Off to school.

When I picked up Graham from school I noticed something different. He was now wearing shorts with his boots. This was a different look than he had when I dropped him off. I certainly would not have let that fly. I would later find out that he had some major over spray issues while visiting the bathroom which required a uniform change. Graham rode out the rest of his day in shorts and cowboy boots. He did so without complaining and tolerated the incident well. For his flexibility and ability to cope in the face of such disaster he earned a praise card from the teachers. All in all, he was downright proud despite his goofy outfit. He was just happy that everyone could see his boots from top to bottom. In his eyes, this was the perfect day.

I wonder what this means to me. What can I learn from this experience? Well, other than the obvious.

I think I am relearning what my 4 year old son so obviously mastered yesterday.

Lessons form a four year old boot and short wearer:
  1. Don't sweat the small stuff.
  2. Don't worry about the things you can't control.
  3. There is always, always, always a silver lining.
  4. It is still perspective.
I am thankful for the reminder from my purpose.

Tuesday, January 20, 2009

All for one and one for all

Good morning! Would it surprise you if I told you it has been busy around the Dungan household? Of course not! And so it has. The twerplets are doing great. Ainsley has just about completely healed from "chipmunk-asitus." Her cheek has shrunk down to normal size and I can look at her full on without wincing. All of them had a very active weekend and holiday. Everyday brought good weather and an opportunity for them to get outside and shake all of that energy off.

On Sunday I took them out to the park to get them out of the house so Lynley could clean. Of course I also wanted to see how much I could wear them out. I took them to a new park that seemed to have miles of wooden play equipment. This was perfect. We played follow the leader through the make-shift obstacle course we created. You know - across the balance beam, down the slide, up the stairs, into the tunnel, over the bridge, up the net, down the pole, and so on. We (yes, I said we) must have run for a solid 45 minutes before taking a break. They had a blast. Ainsley was a little slow, more due to her short legs and the fact that she could not reach some of the obstacles. But, she followed us every step of the way. By the end they were all dying for a drink of water and a "rest." Success! And I had them completely worn out before lunch time.

Now, the thing you may not know is that my kids were perfect while we were playing. There was not a single argument. Not one made glance in another's direction. The were the three little musketeers. However, once I got them back into the car the wining started.

"I don't want water. I want juice."
"Graham is touching me"
"Sydney gave me a dirty look."

Blah, blah, blah...

It did not take long before I had it. I began by punishing the tattlers and then followed by punishing everyone when even a single twerp misbehaved. Believe it or not, this works for me. I have found that punishing one simply does not do the trick. The problem with this is that, when one tattles on another, punishing either of them simply does not work. As soon as either of them is out of timeout they are back to pushing the other's buttons or tattling. You see, when you only punish one of them the other one will continue to peck at the other. Eventually this causes another fight. The problem seems to be that the one that is punished holds all of that resentment in until they get out of timeout. Then it just flows. If everyone is punished this resentment seems to go away. Sure, they try to blame one another, but I make it clear that everyone is at fault. I have found that the moment someone tattles, if I punish the entire group it curbs the behavior.

Regardless, it did not take long on our ride home for everyone to end up in a quiet timeout. I even got to listen to some "Fundraising in a down economy" podcasts. I did not necessarily enjoy it but it did reaffirm many of my beliefs about fundraising. And, I got to do it with three very quiet children in the back of the car. I just hope they weren't listening to closely to the fundraising podcast. Otherwise, I have a feeling they will be making a plea for their toy fund in the very near future.

Well, I had best be off. A mountain of work sits before me.

Purpose abounds.

Friday, January 16, 2009

Childhood Cancer at

Good morning! Every once in a while there is a great opportunity to make a worthwhile difference in the lives of others. Thanks to Bob Piniewski a father of another child with cancer we have a great opportunity to have the voices of children with cancer heard. This is your opportunity to make a difference. And it costs you nothing but about 1 minute of your time. I know, I did it.

From the website:
"Share your ideas on any issue facing the new administration, then rate or comment on other ideas. The best rated ideas will rise to the top -- and be gathered into a Citizen's Briefing Book to be delivered to President Obama after he is sworn in."
Bob got an early start. Right now "Increased Funding for Childhood Cancer" is the #2 rated idea. Close your eyes and imagine this: Obama walks into the Oval Office and settles in on January 26th. He is handed The Citizen's Briefing Book - outlining the issues facing the new administration. He opens it up. The first issue facing the new administration is "Increased Funding for Childhood Cancer". There are over 500 comments and stories for him to read.

Can any human being see that and read that and not do something about it?
  1. Go to
  2. Sign in.
  3. search for "Increased Funding for Childhood Cancer"
  4. Go to the answer with the most comments. Vote it up.

If you have another moment, leave your story in the comments. Invite him to the CureSearch Milestone Walk June 21, 2009 in Washington DC.

Let's do it......Let's give all of these children a voice.

Please forward to your contacts. Thank you all so much.

see, sometimes purpose is free.

Thursday, January 15, 2009

The Little Chipmunk

Good morning! I hope all is well. It has busy around the Dungan household. This week the twerplets all started after school activities at GSX, a local gym specializing in children. Graham and Sydney have joined the ranks of the Tae Kwon Do-ers and Ainsley is now an official tumbler. For Ainsley, this is nothing more that an officially sanctioned version of what she does on an hourly basis. She continues to be fearless, always challenging herself to do anything that her older brother and sister can do - only better. She is clearly the third child. I generally don't like to compare one child to another but I am so completely amazed by what I believe is the 3rd child phenomenon that I will break the rules. Even given the age difference I would consider her an equal to her brother and sister in dexterity. If I compared her to them when they were her age there would be no comparison. She is far more advanced than they could have ever dreamed to be. She is also more stubborn.

Perhaps, that is the reason for her success.

Many people doubt her prowess. Oddly enough, when we were signing her up for a class she was put in a group of older children. This was mostly due to the fact that we were trying to schedule all of the twerplets classes together. None the less, one of the trainers was rather snooty, "We don't allow younger children in this class. They are not able to keep up." After much discussion and a few disrespectful leers in our direction, Ainsley joined the older class. It turns out that the rude trainer was right. They weren't on the same level.

Ainsley was much more advanced. The rude trainer will never know. Thankfully, she was teaching another class anyway.

Graham and Syndey are enjoying Tae Kwon Do. Lynley and I chose for them to participate in this activity less for the physical exercise and more for the building of their self esteem. Sydney continues to have the habit of quitting and refusing to do anything she can't do perfectly on the first try. This environment is not conducive to that. Furthermore, she is challenged by her little brother. She is learning that she has to work hard. She needs that. I like it.

Graham is doing well, too. In fact, I think this may be best for him. This will be a big confidence boost for him. He is already learning that he can be very good at it. His improvement has been amazing. You can literally see his confidence grow by the minute.

So, after having two kids in Tae Kwon Do you would have to expect an injury. And we got one! But, it did not come from those that were practicing martial arts. No, it was from the expert tumbler who accidentally took a tumble down the stairs while trying to slide down the railing with a cup in her hand. She fell on her cheek and, apparently took a pretty good bite out of the inside of her left cheek. She now has a pretty good ulcer on the inside of her mouth that will get worse before in gets better. Her cheek has grown to about 4 times the size of normal. From the left side she looks like a chipmunk still storing nuts.

I always knew she was full of them anyway.

Well, there you go, a twerp update.

My purpose is energetic.

Wednesday, January 14, 2009

MIBG Therapy: Where are we headed?

A video of the MIBG therapy presentation by Dr. Gregory Yanik from the CNCF's neuroblastoma conference is now available online on the website. Dr. Yanik is one of my favorite oncologists. By many, he is considered the father of MIBG therapy. For others, he is just considered one of the nicest pediatric oncologists in the world. The video can be found here:

This video does a pretty good job of summarizing the different options available to families as far as MIBG therapy goes. Although MIBG therapy is not necessarily a front line option for all children with stage IV neuroblastoma it should definitely be a consideration for those that have refractory disease. As a combination with transplant it is now a viable option for kids with less than a complete response to induction. Bottom-line, if you are heading to transplant and your child still has some disease present, this is something that should be on your radar. I am not saying it is a must but it should certainly be considered and discussed. It may not be right for your child but, then again, it might. Make sure you ask.

Dr. Yanik also discusses some of the other MIBG therapies available to children with refractory or relapsed disease post transplant. This, by the way, includes the new super powered version of MIBG (Azedra) which holds great promise. In short, this is a helpful video for anyone that has some disease present and it is also a pretty good video for those that just want to stay on top of options for treating neuroblastoma.

I guess you could call this nuclear purpose.

Tuesday, January 13, 2009

MRI Results

Well, here we go. Results! I should let you know that we are still lacking an official report. However, I can tell you that Dr. Eames did talk to the radiologist reading the scans and this is what she had to say:

Radiology just called and images just got loaded late this am and just now read. Formal report not out yet but I talked with radiologist who read study and all is moving in favorable direction. Still not normal appearing but continued improvement with less changes in the focal cortical lesion and minimal enhancement now in adjacent soft tissues. Bottom line, it appears to be resolving/healing. Signal intensity in the marrow is lessening in each study.

My recommendation is to repeat in early May along with CTs which will put our CTS at ~6 mo interval and f/u MRI at 4 mo interval. She will need Echo and EKG at May visit as well as counts , chems and thyroid studies.

So, there you have it - pretty good news if you ask me. I will take a big sigh as I was obviously fearing the worst (that is the neuroblastoma hating dad inside of me.)

Now, all I have to worry about is Lynley finding out that I talked about her bra in my diary.

Purpose comes in many forms.

Monday, January 12, 2009

The Amazing Magnet

Well, I am happy to report that Sydney made it through the MRI just fine. Unfortunately, Lynley, once again, did not. You see, Lynley is known for always forgetting to leave something metal on her body when we enter the MRI room with Sydney. Last time it was her hair pins. She spent out last vist clutching her head as her hair pins fidgeted and pulled themselves toward the magnet. After that experience, she said it felt like bugs were crawling through her hair. I just thought it was funny. I had a picture in my head of Agatha, the green witch from the Bug's Bunny cartoons, that always had hair pins flying out of her hair when ever she took off on her broom. Of course, I am not making any other comparison here.

So, yes, I thought that was funny. But I must admit that this time was even more funny. I little heads up for the ladies out there. Apparently, the under wire of a bra can have the same problem. Lynley stated that it was one of the more violating experiences she ever had. She said that they spent the better part of an hour vibrating. I just could not help but laugh. Frankly, I always felt drawn to them as well. It must be my magnetic personality.

Oh, bad, I know. I will be sleeping on the couch for the rest of the week for that one.

Regardless, the important part is that Sydney did fine. The placement of her peripheral IV was the only hard part. It took 3 pokes and it was one of the anesthesiologists that finally got the job done.

Hopefully, we will receive the results today but I am not holding my breath.

I will be purposefully patient.

Friday, January 9, 2009

The fragile thinking mind

Good morning! Well, today is a busy day. I don't believe I mentioned it previously but Sydney will be having an MRI today. Surprise! Thankfully, it is not so much of a surprise for us. This is routine. After rescheduling a MRI in December, this is what we were left with. The purpose of this MRI is to, once again, take a look at her arm to see where we stand.

What do I expect?

Hmmm. I really don't know. I guess I truly fear a progression of the spot. If we were going to see a progression, I am guessing that this would be about the time that we would start to see it. Does that make sense?

Here is my logic. We discovered this "spot" back in late 2007. After a series of tests, scans, and you name it we finally came to the conclusion that we truly had no idea of what it was for sure. I was prepared to treat it. That, of course, is because I am mental and I really, really hate neuroblastoma. None the less, with no other evidence and a history of over reacting, we decided to be a bit more aggressive in our diagnosis and less so in our therapy. In March (or maybe April) of 2008 we elected to go down to Texas Children's to have a guided needle biopsy performed. It was inconclusive. Well, it wasn't entirely inconclusive. After all, they concluded that they could not find neuroblastoma. Later that year we would have a series of scans. At first, it would show the spot was larger. This was expected. The scans were seeing the trauma from the biopsy. In September of 2008 we were finally far enough out that we were no longer seeing trauma and, in fact, we saw some shrinkage of the spot.

Obviously, this was good news.

So, here is my worry and my theory today. Was the shrinkage due to the fact that this was a spot that was resolving? Neuroblastoma or not, was this spot shrinking without treatment? Was this benign?


Is this spot actually growing again? Think about it. We went in with a needle to a 3 mm nodule and sucked some of it out. This made the nodule smaller. It had to. It was not big enough in the first place. So, in short, the biopsy alone probably shrunk the size of the nodule. We could not see this for months due to the trauma of the procedure. Finally, when enough time had passed, we finally did see the nodule was smaller. But, I ask you, was it smaller because it was resolving or was it smaller because we took a part of it out?

If that is the case, could it be growing again? Wouldn't this be the opportune time to see it grow?

Well sure it would. And this is the reason that I am so completely mental. This is were by brain goes and while I should be envisioning sugar plumb fairies I am actually wrestling with this psychotic stuff.

Yes, this is yet another look into my fragile psyche and the fear that this monster continues to put before us.

On another note, I hate Friday scans.

We won't have the results until next week.


I've got purpose on the brain.

Thursday, January 8, 2009

Teeth - you get what you get and you don't throw a fit.

Today, we made it successfully back into the swing of life. The kiddos were ALL back in school and life had returned to normal. I am happy to say that both Lynley and I got some work done and the kids had some schooling. It had been a long time in coming. As much as we love to be together as a family, I think we all needed a break.

At 3:30 PM in the afternoon, Sydney had a dentist appointment. I always walk into these holding my breath. We just never know what to expect. Teeth and chemo do not necessarily go hand in hand. This is one of those possible "long term" effects that families in treatment really don't want to hear about but it is a reality. During my time in the neuroblastoma world I have seen dental problems run the gamut. I have seen everything from brittle teeth and deformed teeth to non existent teeth. Of course, I should point out that for some I have not seen many problems at all. My guess is that it is probably related to your age during treatment and the growth stage of the teeth. Regardless, we too have seen our fair share of dental anomalies.

Yesterday was no different.

First off, Sydney is missing one tooth. She lost it a few years ago and an adult tooth simply never came in. There just isn't one there. By looking at her you never would know. But, the fact remains, it has gone missing. It is probably a result of the chemo. It is not all bad. She probably needed the extra space anyway. I am not being funny. It is pretty true.

So, back to yesterday. She had a standard checkup, cleaning, etc. It is what I call the $150 special. The x-rays have shown a few problems. First she needs a filling. From what a gather from the dentist, this is not her fault. It is unlikely that she could get a brush to this spot on her tooth. It is more related to the shape of the tooth. Regardless, it is a pretty easy fix. The others were worse. She requires two crowns. Oddly enough they are the exact same teeth just on opposite sides of the mouth. The good news (if there is any in this) is that these two teeth are baby teeth. She will most likely lose them in the two or three years. In fact, at her tooth losing pace I might even expect it much sooner. Regardless, these two teeth have begun to have issues on the side where they meet other teeth. For this, the will each receive a new silver crown. Thankfully, they are far enough back in her mouth that they will not be seen.

All of a sudden our $150 6 month visit has turned into a couple more $300 visits over the next two months. Honestly, I am not complaining. I have expected and prepared for far worse. Although her teeth are not perfect they are certainly better than what I know they could be. I am thankful for that. We will suck it up and chalk it up as the price to play and be thankful for the opportunity we have been given.

I realize my purpose is a gift.

Wednesday, January 7, 2009

The Big Lie

Yesterday morning was quite a change for all of the kids. They weren't quite ready to head back to school. There was significant groggy moaning as we began the morning race to get ready for school. Ainsley and Graham led the charge. Sydney was already beginning to claim her inability to get ready for school. It started with "I am too tired to get dressed" and was followed by a blatant disregard for our "suggestions" to do so. Eventually, we were able to motivate her into her school uniform and downstairs for breakfast.

At the breakfast table she continued on her whiny path.
"I don't want to eat." "I am not hungry." "My tummy hurts." "I feel sick."

Based on her behavior I was not too willing to give in. I pulled a hard line.

"Eat your breakfast, Sydney!"

She refused to eat. She remained argumentative and difficult. Eventually her mother came down stairs. While we were alone on the far side of the kitchen, Lynley told me that she had not completely recovered either and that, perhaps, she still was sick.

I decided to be softer. Since I did not know how either of them truly felt I decided to let Lynley handle the situation. Within moments it was decided that Sydney would stay home from school. I was still sceptical and I made it clear that if she was going to stay home today she had to do so as a sick person. That meant she stayed up in her room in bed. No playing. No Wii. No nothing. If you are sick, you are sick.

Yeay, yeah , yeah. I know. I am a big meany.

Big old daddy meany. I get it.

Lynley took Graham and Ainsley to school. Sydney went up to bed. I got the computers out (yes computers - I am that sophisticated) and began to work away in my home office.

Time flew by. I was cranking away.

At 9:40 AM Sydney came down stairs. I heard a small voice from around the corner.


"Daddy, I did not tell the truth. I just didn't want to go to school."


I was extremely disappointed. In fact, I still am. Sydney and I have always had a bond which seemed to help transecend lies. In fact, on many, if not all occasions I have been able to get to the bottom of almost anything with her.

She gave all kinds of excuses from "I am afraid" to "I don't want people to make fun of my purple thumb." At this point , however, this was not a word out of her mouth that had any credibility with me.

Sure, I did not use my SuperDad truth telling powers on her yesterday morning but still, I just wish she had been honest with me. I am glad she eventually came down stairs and told me the truth but still I was taken back.

Look, I know she isn't perfect. Heck, she has too much of me in her for that. But, I expect truth telling to be pretty important.

I wish she hadn't made that choice.

Hopefully, she will learn and, hopefully, we will be able to build back that lost trust.

It was a disappointing day to be a Dad. I wonder what I can do to help her realize the importance of telling the truth.

Yesterday I was tricked by my purpii.

Tuesday, January 6, 2009

The Caped Puke Crusaders

Good morning! Well, it has been a few days. In fact, I don't think I have written yet this year - and for good reason, too.

Over the years I have learned to take things in stride. However, if the rest of 2009 goes like the last five days then this might just be the best year to simply bury my head into the sand. Actually, 2008 wasn't such a bad year and, as you will find out, it began just the same way.

You see, we began last year with Mark settled in the den between two puking girls. While I have chosen to wipe many of the details from my memory, I still distinctly remember trying to sleep on an air mattress in the middle of our living room floor. I place emphasis on the word "try" as I also remember spending most of the hours meant for sleep shuffling puke containers back and forth to the kitchen, doing laundry, and cleaning unmentionables in the bathroom. Everyone got sick. Lynley, Sydney, Ainsley - heck even Mimi eventually

Well, everyone but the boys. It seems that we were immune to the "vomit virus" We were thankful that we made it out unscathed and proud that we had done such a stellar job caring for the girls. Yes, for weeks we could point out our courage and selflessness in the face of their sicknesses and get away with almost anything.

Sure enough, though, they soon forgot. It was not long before we were relegated back to our normal positions within the household - Honey-Do List Boy and his side kick Middle Child.

It was amazing how quickly they forgot how we ushered their puke buckets back and forth, how we cleaned up for them after nasty trips to the bathroom, and how we cooled their heads with those ever damp cloths.

And so came this year.

As if a punishment from up above for not appreciating their men well enough, the plague of the "vomit virus" once again swept through our house and spared the man child and his benevolent and caring father. It swept through the women like wild fire inducing explosions on either end - often in unison. For days we toiled. - gladly bringing chicken noodle soup when needed - only to run off to clean up after another vile explosion somewhere else.

Who was there?


Yes, SuperDad and his sidekick the Twerp Wonder - the Caped Puke Crusaders.

Maybe this year they will remember our sacrifice.

Then again, probably not.

Especially if they read this.

I think this is just another one of those things that we were supposed to do.

Purpose, take us away.