Friday, November 28, 2008

The Hay Hole

Well, I have a few moments to type before the twerps make their way downstairs. They are sleeping now but I know full well that their play clocks are ticking. We only have 1 day left in Alabama and they are well aware of it. They will be moving to get in as much as they possibly can today. That is good news as today we are heading out to the farm. You may remember this episode from our last visit. This was a black day in our family. Yes, this is the day that Lynley's Suburban died on the way back from the farm. This marked the end of my dream of getting a new car. Yes, it was this very trip that Lynley leveraged a simple broken axle into a new car for herself. Oh, the memories - back when I used to have dreams of a car with low fuel costs. I guess I can't really complain as the good karma eventually came in my direction in significantly lower gas prices.

So, today! The kiddos can't wait to go to the farm. They have been looking forward to this for weeks. If I told you exactly why, your impression of me might change. In fact, I did not even mention it last time due to the possibility of a misconception. However, given the fact that this is such a major part of their lives, I guess I will just have to say it. The kiddos love the farm because of the "hay hole." Yep, you heard me. They absolutely love the "hay hole" at the farm. They love going in the "hay hole." They love going out of the "hay hole." They love everything about the hay hole. The worst part of this all is the fact that they love talking about the "hay hole."

You see Doc McCurdy keeps bales of hay up in the attic space of his barn. The kids love this because of all of the little hiding spaces that they can find and create. They always seem to create some type of igloo type of structure that keeps them talking all year long. For some reason, they call the front door of this structure the "hay hole". They have no concept of what it sounds like when they call it the "hay hole" but they delight in talking about it no matter where we go. Think about it. Now, I want to remind you. They have no concept of what it sounds like. There is no recognition. The only sign that they get that there could be an issue is the fact that I cringe every time they say it. Let me tell you why. They will tell the check out lady at the grocery story how much they love playing in the hay hole. They will tell the gas station attendant how warm it is in the hay hole. They will tell the waitress at dinner how, if they all scrunch up real tight, they can all fit in the hay hole. Yes, they delight in telling the whole world how much they love playing in the McCurdy hay hole.

It is down right embarrassing. I can't help it.

Sometimes I also can't stop laughing.

Regardless today my purpose will be focused on the hay hole.

Wednesday, November 26, 2008

Wow, we forgot we weren't just Mom and Dad

Good morning! Well, here we are. Day 3 in Alabama. It has truly been a relaxing time for the Dungan family of five. Lynley and I have even had the opportunity to have a date and visit the movie theater to watch a movie - a movie that was not animated. We watched Quantum of Solace. While it was good (that is our baseline definition of any Bond flick) it was not as good as the last. None the less, it was better than many we had seen before. Look at me. I am gushing. Well, that is what happens when you have an official date with your wife (and without the twerp brethren) to a big person movie. I don't want to make it sound like we made to Alabama just to dump the kiddos but we also got to go on an official grown up date to dinner last night. We went to Outback and enjoyed ourselves immensely. We had steak and alcohol and applied both liberally. Yep, we are like kids at a candy store. Can you feel the love in the air? Now, I don't want to make it sound like the twerplets have not had just as much fun as their adult counterparts. They have been to SciQuest and have had plenty of opportunities to show their stuff as well. In fact, I can tell you that there has not been a night that they have gone to bed anything but exhausted. They have also claimed Lynley's brother, Uncle Jay, as their own toy. He cannot enter the house without being enveloped by a gaggle of Dungans. When he is not at their command he can be found in front of the Wii. The Wii, by the way, has been quite the hit. Everyone has played and their always seems to be some sort of challenge going on.

Finally, there seems to be a case 0f stuffinoseatitis going through the family. With the exception of Sydney on Monday afternoon no one has seemed to slow down even a moment. Sydney did spike a fever but we have not seen hide nor hair of it since. However, the symptoms seem to have gone through all of us. Stuffy noses are universal in the morning and the coughs seem to be fairly constant. As I mentioned though, it has not seemed to slow anyone down for long. In fact, I have cherished the odd minute or so when the kiddos just wanted cuddle for a minute instead of running 24/7. Overall, our visit has been a nearly 100% success and I am looking for to another day of fun.

It is what purpose is all about.

Monday, November 24, 2008

The Griswolds have arrived

The Griswolds have arrived. After two days driving across the South we have finally made it to Alabama. Lynley is ecstatic to be back in the South and, while I believe it is beautiful, I still can't help feeling a little bit like Uncle Daddy. The trip was relatively uneventful. I am happy to say that over the last few months Ainsley has apparently outgrown her habit of the constant jabbering. None the less, she has very definitely grown into the constant questioning. "Are we there yet?" "Are we in Alabama?" "Are we going to see Mimi and Papa?" "Can I have another piece of candy?" "Are we going to the hotel?" "Are we going swimming?" I know, I know. It doesn't seem that bad does it? Well, let me add this twist. It doesn't matter whether you answer her or not. She will continue asking the same question over and over again.. It takes asking a question atleast 20 times to get her to change to a new question. It is completely and utterly odd. As experienced as I am as a loving and caring father it is extremely hard not to get out the duct tape, turn around, and apply liberally.

We brought Lynley's fancy new car. The kids had unlimited movies and music complete with their own headsets. This left Lynley and I to work on important stuff. We decided to take our financial counselor with us. I had secretly purchased David Ramsey's Total Money Makeover and had stored it on my iPhone. I had used the rest of the duct tape to tape Lynley down so she had to listen to it. It was the perfect scenario. Wife listenung to information on spending less money and kids happily watching a movie in the back seat. Well, I was foiled. Every odd minute Lynley complained that Dave Ramsey was too negative and every even minute Ainsley would ask if we were going to a hotel. The best use of the duct tape would have been to tape socks to my ears. Regardless of these obstacles, I kept my cheery attitude amidst all of the misbehavior and whining from my eldest and youngest females. Graham, Sydney, and I travelled just fine and have a new found appreciation for never using credit cards.

Last night left us in Little Rock. Lynley had found a hotel with a heated indoor swimming pool. While I would have enjoyed it more had it not been the host hotel for the Arkansas State PeeWee All Star Championship, the kids seemed to enjoy themselves immensely. I mistakenly decided to sleep on the pullout couch bed and Sydney on the floor. (Nobody wanted to sleep with Ainsley - where spinning like a top and a slap in the face or elbow square between the shoulders is guaranteed every 10 minutes or so.) Next time we will throw Ainsley on the couch and sleep together on her bed. None the less after another 5 or 6 uneventful hours the next morning on the road we made it safely to Alabama.

We are happy to be here. A little wiser but mostly just needing a good night's rest.

Purpose has arrived.

Friday, November 21, 2008

A Gentle Response to Your Suggestions

So, after yesterday's post I received several messages and emails. All of which were suggestive of the same solution - another Dunganlet. In response to these suggestions I considered allowing a guest scribe (my blushing bride) to author my blog for the first time in the history of Dad's Diary. It did not take long before I realized there were not enough punctuation marks to cover up all of the expletives that were necessary for her to adequately express her feelings on this topic. Additionally I felt that her descriptive adjectives might possibly be too colorful for my otherwise family friendly literary atmosphere. So, in response to your wonderfully helpful suggestions, I have edited down a slim version of her response for your reading pleasure.


With loving purpose,

Your humble author.

Thursday, November 20, 2008

The Awesome Insanity of Three

I am happy to report that every one's pants appeared to stay up yesterday. Their were no yellow stickers and no scoldings. Well, I can't say there were no scoldings but their were none related to pantsings or other schoolish misbehavior. I am embarrassed to admit it but there are plenty of scoldings that seem to go on in any given day in the Dungan household and the irony is that the majority of those scoldings come from one of the children tattling on the other. Graham and Ainsley are the worst but Sydney is certainly on angel either. I am just amazed at their dedication to getting the other one in trouble. The most shocking thing about this is that the tattler generally gets punished as well. Regardless, this ritual of eventual self abuse is running rampant in the brains of our little Dungan twerplets.

Why are siblings so mean to each other? Why do they fight so much? What can we do about it?

These are three questions that run through my head routinely. I just don't get their fighting. The good news is that this is in complete contradiction to their behavior when they are in groups of two. When my children are in groups of two they are the most loving, supportive, and protective family units you can imagine. It is a "love in" that will bring you to tears in admiration of what a fine job we have done raising such wonderfully compassionate, kind, and well-behaved kids. Add a third Dunganlet into the mix and you have concocted the most vile, hateful, and self-destructing unit imaginable. The mixture explodes almost as soon as it is constructed. It is like adding fire to dynamite.

Sure, you have seen pictures of them playing happily together on the tramplene or up in the trees. Okay, so I can admit that it does not seem to happen when they are playing outside. But, you stick them inside, then watch out. Explosions will occur. It seems that every 2 minutes I hear a scream and the pitter patter of little feet. The reporter is their to tell me what the other has done.

What do I do?

I punish them all. The official charge is "Not playing nicely together."

You would think this would work. They all got punished. Surely, they would not do it again.

2 minutes later - aaaaaaahhhh - pitter patter, pitter patter - "Daddy!".


Got any ideas?

I have plenty of purpose but no clue.

Wednesday, November 19, 2008

Drive By Pantsing

I am often very proud of my kiddos for their creativity. Then again, there are also days when I think - "Where did that come from?" And then, there are definitely those days when I know exactly where it came from. Yesterday was one of those days. I had to pickup the kiddos a little early from school due to a dentist appointment. Graham was out playing with his friends on the playground. He certainly seemed happy enough and he was indeed having a blast. When he saw me he flashed his signature smile in my direction. and bolted towards me. We met at his backpack which was laying on the floor. His first words were not, "Hi Dad!" They were, "I got a yellow sticker." I asked him what he did.

Apparently, Graham was on his way in from recess today when he was trying to get another little boys attention. It is interesting to note that this other little boy is much larger than Graham. The boy would not talk to Graham. So, in an act to get his attention Graham decided that it would be a good idea to pull the little boys pants down to his ankles.

Yep, you heard me. He pulled the boys pants down.

I asked Graham why he did it and he simply said "He wouldn't talk to me." The report from the teacher said "I had no idea why he did it." I, of course, told Graham what I bad choice this was. I gave him a mean daddy look and I let him know that he would be punished. I told him I was very disappointed in him and I did this all without cracking a smile. It is not that I want Graham to be pantsing other little boys I was just absolutely flabbergasted that he did it. I imagine if I was the father of the other boy I probably would not think it was nearly as funny as I honestly thought it was Wow, does that sound like something I would have done.

I think Sydney felt the same way. As soon as we gathered her from class, Graham told her of his yellow sticker and the incident. She scolded him pretty severely. She came from every angle. Honestly, I think she did a better job than I. As we got in the car Graham buckled in and Sydney came up and whispered in my ear - "Daddy, that is the funniest thing I have ever heard."

None the less, I don't think Graham will be pantsing anyone at school anymore. We took away his TV privileges, his ability to play outside, and we made him write "Pantsing is a bad choice." three times on a sheet of paper to take back to his teacher.

Like father like son. Like father like daughter. I see myself in this incident as both of them.

Thank goodness I found a purpose.

Tuesday, November 18, 2008

Straight As

Yep, you heard me, report cards were delivered via email yesterday afternoon. Sydney received all As. I can't tell you how proud I am of her. Trust me, I knew she was pretty clever. I just didn't know for sure that anyone outside of our bloodline thought so. I fully admit it. I am a biased dad. I think my kids are the greatest. However, I also know that I have some very rose-shaded (and neuroblastoma-shaded) glasses. I never really know if what I am seeing is reality or just my conjured perception of the world. It is so nice when my feelings are confirmed by a third party. It just seems that much better - that much more real.

I should also say that I am pretty hardcore. I expect her to try her very hardest. In her case, I expect excellence. That is not an unrealistic expectation for her. She is capable of doing anything she wants in life. She is as stubborn and tenacious as her mother (don't tell Lynley I said that). I know, full well, that if she sets her mind to it their is nothing capable of standing in her way. This is also one of my biggest frustrations with her. You see, of all things, vocabulary is Sydney's weakest subject. Now, it isn't because she doesn't understand. It isn't because of some late effect of chemo that her vocabulary cortex (totally made up) has been degenerated. It is because she is a stubborn little twerp that hate, hate, hates practicing her vocabulary words. If she was 1/1000th as tenacious at her vocabulary as she was with obliterating me at bowling on the Wii I am quite sure she would be communicating solely in 4 and 5 syllable words.

None the less, I am pretty darn proud. Can you tell?

So, the last 2 major items of business are Ainsley's ear infection and Sydney's preliminary results from Houston. Yep, Ainsley has an ear infection. Like her sister she correctly self-diagnosed. Yesterday, we visited Dr. Debbie and she confirmed Ainsley's diagnosis. She is now on a healthy diet of antibiotics. We expect a full recovery by the time we scadoodle out of town this weekend.
Secondly, I heard from Dr. Louis from Texas Children's yesterday afternoon. The were able to continue to detect the EBV activated cells in Sydney - so, the previous findings were confirmed. They will be studying the marrows next. I will go into more detail tomorrow.

Well, I have to jet.

There is purpose all over the place today.

Monday, November 17, 2008

Reminiscing Fear

Good morning! I am happy to report the Dungans had a great weekend. While I can't say that it was anything out of the ordinary I am reminded today of what a privilege that is. It is easy to get wrapped up in life and to forget what we have been through and for what others are going through today. In all of the crazy travel and general busyness I have neglected to mention that Graham's friend Hayden was in transplant. They are now on day +7 and fully engulfed in the worst of the worst of transplant. I remember this clearly. Sydney had a very good transplant experience in comparison to many that I have witnessed and, yet, it still gets the hair to stand up on the back of my neck whenever I reminisce. Hayden is at that point where, everyday, it just gets worse. I think someone said it best when they said the only thing that seemed to break the monotony of the lows was a new low that was previously thought impossible. The body just continues to deteriorate and you feel as though you are just left there to watch. With every minute and hour it just gets worse and you begin to wonder if they will ever pull out of it. Honestly, I still have nightmares of some of the things that happened in transplant. You wonder how much their little bodies can take. You pray and beg for their cells to engraft so that their little bodies can begin the process of recovery. It is not just a scary time. It is absolutely gut wrenching. As I think back on our journey their are a few times that I remember being truly scared for Sydney's life and there is no doubt that this was right at the top of my list.

There are tricks to getting through it but mostly it is just a waiting game. The trick seems to be for parents to continue to put one foot in front of the other - to just keep plugging on. Time seems to just drag on and every minute seems like an eternity. You just have to keep focusing on what you can control. Keep letting them know that they are deeply loved and that you are there. Help them with everything you can and help the nurses to better care for your child. Focus on the little things - one at a time. And then, eventually, the next thing you know you will see a blip on the labs. You will see signs that the cells are engrafting. At first you will feel a ton of weight lifted from your shoulders but that is generally short lived as you begin to wonder if what they say is true. Will it get better? Will these little cells make the difference?

Yes, they do.

First 1, then 2, and then 4 - day by day it will get better - exponentially. All of a sudden their little bodies will begin to heal and their lives will come back.

You just have to keep praying and keep moving forward. You will get there.

Purpose is not easy but you can, and will, endure.

Friday, November 14, 2008

3rd Lesson learned at NCI Translates

I think it is truly apropos that I talk about this lesson today, the day after we hear that Sydney remains with no evidence of disease. While I certainly can't blame her success on the Nestle vaccine that she received I certainly can blame this last set of tests on it. The timing was very interesting. Perhaps that is the reason I am so sensitive to this lesson.

While at the NCI I had a job. I was an advocate for the agents pathway - biochemical targets and drug screening. My job was to identify how approximately 30 different medical abstracts fit into the agents pathway - one of the 6 "road maps" that I have been discussing over the last few days. I was supposed to apply the information and to help researchers figure out where they fit in the whole translational scheme. I was to get them thinking of the patient, the challenges, the process as a whole. My subject matter, biochemical targets and drug screening, was certainly interesting and something that I was capable of discussing but was not my true passion when it comes to research. It was for this reason that when I was not officially working I made my way through several of the other 30 or so sessions. I really had an opportunity to see the breadth of cancer research. As you know, I always have an ulterior motive. My goal was to find something new that could have applicability in neuroblastoma. I was looking to make that connection - to find that next most promising hope. To be honest, I found many promising agents, biospecimen discoveries, new imaging modalities and interventive devices. I even learned a tremendous amount of truly interesting facts on diet and lifestyle changes that have impact on cancer. It was all very interesting. But, nothing held the promise nor shook me to the core like the sections on immune response modifiers.

The idea of using the immune system to fight cancer is not a new one. After all, that has been the whole idea behind both the antibody therapies that Sydney has been on and the vaccine. I have said it before and I was certainly not the first. The immune system is the best weapon that we have against disease. It brings tools to bear that we can only dream of recreating in the lab. I don't think anyone would disagree that if we could get the immune system to identify cancer it would have no problem producing a cure. It has everything needed to do the job. The problem seems to be that we just have not been able (as of yet) to get the immune system to identify and kill the cancer cells as they should.

I was amazed by the abstracts and posters that I viewed in the immune response modulators sections of NCI Translates. It seemed that poster after poster I reviewed I found examples of cancer vaccines and other immunological approaches having dramatic success at defeating cancer. I saw whole tumors disappear and people achieving complete remissions - all of this and without many of the toxicities that we see with chemotherapy or radiation. It became evidently clear (in my mind at least) that this was the key to our success. More than any other session, it was the brains within this room that the cure lived.

The more I read and reviewed, the more of a believer I became. It seemed that at every turn I was introduced to a new idea on how to leverage the immune system to defeat cancer. More often than not I was seeing some successes. Now, don't get me wrong. I did not actually stumble on the cure. Their was not something sitting in that room that I could put my finger on and say was the cure for neuroblastoma. But, what I did see were many successes. The best part was that in these sections I saw the most dramatic effects. While in my "agents" sections I might have seen a new chemotherapy that had significant activity it was certainly not to the extent that I was seeing in the immune response modifiers sections. Furthermore, the toxicities were far less and in many cases their were no long term side effects seen at all. It became apparent to me, more than ever, that this was the future. This is what was going to lead to our cure.

While I will flatly say that I believe that immunotherapy will be our cure for cancer there are many problems with this approach. First, it is ungodly expensive. It really is. Second, it is risky. Mucking with the immune system can come back to bite you. You have to be extremely careful. Third, although we have discovered and produced many incredible tools to help the immune system do its jobs most (if not all of the best ones) are held on the shelves of pharmaceutical companies not allowed to be used. This last one just blew me away. But, I can not tell you how many times a researcher had been turned down time after time trying to get a promising new drug into patients because it was held as intellectual property of a drug company that was unwilling to carry it forward. There are so many drugs out there that we know work but that we just can't use - literally just sitting on a shelf. For those of you that have been waiting for 3 plus years for the Sloan Vaccine. Guess why? It was one of these very types of drugs that has held this promising therapy up for so long.

This will come as a surprise to many with neuroblastoma - especially those that have antibody therapy. Did you know that there are drugs that are 10 times better than GM-CSF or beta-glucan at stimulating key components of the immune system? Did you know that they exist now, that they have been shown to be much better, and that they are just sitting on a shelf somewhere. They are. I feel confident in saying that we would be light years ahead of where we are today in cancer research if we could just get a hold of these drugs. It is disgraceful.

So, I really began this entry to talk about how blown away I was by the successes that I saw with vaccines and other immune response modifiers. For me, it was that moment that a light went off in my head. In fact, I am madly planning a path at how we will jump on the coattails of many of these successes. While I still fervently hold the belief that the cure to our future is with the immune system I think the major lesson to come out of this is the problem of the pharmaceutical companies. They are killing cancer research. And, at the very least, they are slowing our pursuit for the cure. (if you would like to argue this point please feel free to write.) I don't know the answer. I don't know how to fix it. What I can tell you is that after being heavily involved in cancer research over the past five years I have seen dedicated researchers, scientists, and oncologists working as hard as possible to get us to a cure only to be hindered time and time again by a pharmaceutical company. The researchers are not our problem!

I have to muster enough purpose to figure this out.

Thursday, November 13, 2008

Official Report

The official report is in. All of Sydney's test have come back and they are negative for nueroblastoma or any suspicious activity. She is clean!

Deep Breath.....

Now we wait to see what the big brains at TXCCC discover about the vaccine.

Back to purpose!

2nd lesson learned from NCI Translates

Okay, so no word on the biopsy results yet. While Lynley and I are both completely ecstatic with the findings of the aspirates, I find it necessary to continue my act of mental disobedience by continuing to boycott my worry. Today I will address my second lesson learned at NCI Translates.

As I mentioned yesterday, the whole point of NCI Translates was to speed up the research process. This isn't an easy task. I often hear people advocating for all kinds of ways to speed up research but, to be honest, the efforts usually have the opposite effect. Speeding up the cure is not as easy as throwing more money at the problem or funding different research or researchers. It goes far deeper than that. The biggest problems appear, to me at least, to be political and financial in nature - but not the way you think.

In order to speed up the research process the NCI spent several years evaluating their successes. They dissected each successful translational discovery and broke it into it's individual steps. By doing this they were able to identify these "road maps" which showed all of the steps necessary to successfully translate discoveries from the bench to the bedside. This is good and important. Now, anyone can look at these road maps and see exactly all of the steps needed to translate science. This should help to speed up science in that the NCI now hopes to fund along this continuum. They are planning to fund people who have translational goals. With more people pursuing translational science their are more people working productively toward the end goal - a cure. We are more likely to get there more quickly with more people working on the problem in a productive way. Period.

As I addressed yesterday, they are also likely to speed up the process by the mere fact that people are following the road maps. Now that scientist are aware of what comes next they are more likely to work on achieving the goals of translating the entire project as well as their tiny piece. They are likely to address intellectual property and political issues more quickly because they now know that they will becoming ahead of time. Think of it this way. Research is done in this way. When a researcher gets hungry at about 6:00 PM he starts heating the oven up to cook his dinner. He then waits for it to heat up. Once heated he gets the food out and prepares it to be cooked. He then cooks it in the oven. An hour later his dinner is finally completed and he can commence eating. The problem is that now he has been hungry for an hour before he starts to eat. Now, what the road map provides is a plan. If the researcher looks at his road map he knows he will be hungry at 6:00 PM. Knowing this he begins heating the oven at 5:00PM. In this way his meal is completed at 6:00 PM when he knows that he will be hungry. No time wasted and he gets his meal on time. It is the same way with research. Researchers are currently trained and rewarded to work on one discreet project after another with little thought on what comes next. This new way of thinking encourages them to work concurrently, hopefully speeding up the process.

Another way the road map helps to speed up the research process is by helping leaders to prioritize research. Face it, we have limited resources and patients. That fact is not going to change. In fact, with the economy going in the direction it is going I would expect budgets to become even more constrained. It is not going to change. You may think it is our turn. Well, the problem is everyone thinks it is their turn. It is not going to change unless we change it ourselves. I am sorry to be harsh but it is a reality. The point is that prioritization becomes even more important. It becomes critical that only the most promising projects are carried forward. In other words, if your preclinical research does not support dramatic changes in survival then it needs to be put aside in favor of projects that have more promise. Wild goose chases and suboptimal research will only slow down the process by stealing resources from more promising research. This road map will help to prioritize work.

Unfortunately, this will not help pediatrics and "rarer" cancers. They will focus on the biggest bang for the buck. The NCI will focus on research that will have impact on the greatest number of people. For us that means we have to prioritize our works as well. We have to focus on targets and drugs which also have applicability in other cancers. In this way we will find financial support for our projects. I am happy to say that their have been several examples of this done well. The NANT, TXCCC, CHOP, MSKCC, and St. Judes have been successful in finding promising therapies for children with neuroblastoma that also has applicability to larger diseases. This helps us all. The other thing that we can do is to hang our research on the coattails of promising projects in more popular cancers which also has applicability in neuroblastoma. Ultimately this is the research which will be carried forward. We need to be mindful of this and figure out how our children can benefit from this research. When I get a chance to explain my 3rd lesson from NCI Translates I will show some very specific examples of research we (the neuroblastoma world) need to be following very closely for this reason. There are several promising research projects in lung, breast, and colon cancer that could have dramatic impacts on children with neuroblastoma that we need to be on top of. This opinion is not my own. It was shared my several neuroblastoma researchers that were present at the meeting.

As I thought about all of this I really felt that the "road maps" or "pathways" added value. But, in another sense I felt that they were still missing the boat. The pathways were modeled after successes - successful translational research. However, they weren't modeled after the successes that necessarily took the shortest time to complete. While the pathways were pretty accurate at describing every step in the process it offered no guidance on how to complete each step as quickly, efficiently, and accurately as possible. In this sense, their is still no reward for completing the work quickly. There is nothing definitive to speed up research. This is a problem. I don't have the answer here but I certainly offered my suggestions. This was my job as an advocate. Bottom line, the pathways will help to speed up the process but there is more that can be done. We need more creative thinking. We also very desperately need a definition of what research needs to be carried forward and what needs to be abandoned. We, the world of cancer, are still wasting resources.

As I sit here and think, I have decided I have a fourth lesson to be learned from the NCI. This comes under the heading - pharmaceutical companies are good investments for you extra dollars but horrible investments if you want to cure cancer. The answer is out there. Right now. Unfortunately, like 1000s and 1000s of drugs, it is sitting on a shelf in a pharmaceutical company not being carried forward because they don't believe it is profitable enough. You think I am crazy. Just wait to you hear what I have to share.

Well, I had best be off. It is time to focus on my little purpii.

Wednesday, November 12, 2008

Sydney BMA NewsFlash

Aspirates are clear but we are still waiting on the bone biopsy results.

Cautious Yippee.

1st Lesson learned at NCI Translates

No, I still don't know anything regarding Sydney's results. The waiting is torturous. So, in complete defiance of my worry I am going to talk about my trip to Washington, D.C. and the NCI Translates meeting.

Now, the first thing that everyone should know about the NCI Translates meeting is its purpose. While I am sure there is a much more technical and well worded definition somewhere it comes down to this: the purpose of the meeting was to speed up cancer research. To me this is very interesting. Think about it. This is a government agency and they are working very hard to increase efficiency. Who would have thought? I did not think that was possible. This says something very important about our leaders within the NCI. They are clearly committed to hastening a cure. I found this very impressive. I have always envisioned them as being just another slow moving cog in the wheel of research bureaucracy but I must be the first to admit that my perception is changing.

I walked away from this meeting with 3 key messages. Today, I will do my best to address the first. I am quite sure that these messages were not shared universally but they are, none the less, my opinions. At this meeting the NCI unveiled 6 new pathways. One of the primary goals was to get the researchers to start thinking in terms of these pathways. What are pathways? Well, think of a pathway as a road map. They include specific directions on how to take a lab result or idea all the way to a specific cancer treatment or intervention. The pathway describes each step in the process and every key decision that needs to be made. The end result of following these "directions" is either a new cancer discovery that can be applied to a patient or a productive failure. Either way the research impacts the the patient. Either they have a new treatment or preventative measure or we have proven that the new discovery does not work and should be abandoned.

Now, from a patient perspective this may seem nonsensical. Well, of course, this is the way they should be thinking. Sadly, in reality it is not. The bulk of research is done with no end goal in mind. Research is done as a discreet project. It is chosen and pursued because it was what was funded. Finally, it is done regardless of how the science ultimately effects the patient. Read that again - most research is done without regard of what impact it will have on the cancer or the patient. The NCI has stepped in and said we no longer want to fund discreet projects. If you want us to fund your research you have to show us where it fits within these pathways and how you plan to impact patients. For many researchers this is a completely different way of thinking about cancer research.

In fact, this was our job at the NCI. We were their to get researchers thinking about the patients. We asked questions to get them thinking about how their research will get to patients. What are the challenges? What are the steps? What resources do they need to get to the next step. How is their discovery going to make a difference in a cancer patients life.

Ironically much of the research presented had already reached the end of the pathway. A perfect example is the work of the NANT. This is why their work is held in such high regard. They are very good at translating basic research into clinical therapies. Overall, I found that pediatric researchers were much more adept at this process. I think this is largely due to their lack of patients and resources. They have no choice. But, then again, this could just be my bias showing.

Will these new pathways speed up our search for a cure? Well, yes and no. If the pathways are actually referred to and implemented I think it is very likely that research could speed up. Bottom-line, more people will be aware of the steps necessary to get their discoveries into the clinic. This is likely to get them addressing road blocks more quickly. For example, if they now know that they will face intellectual property issues or IRB issues in a future step they can start preparing for them early. If they believe their research will only get funded if their is an efficient plan to get the discovery into the clinic, then they will make sure is has one. These simple steps can literally shave months, years, and decades off of some projects. The pathways also encourage (rely on) collaboration which I think could be extremely helpful in speeding the process. If we are going to move more quickly we have to break down the walls. We have to get the researchers talking and collaborating. We have to tear down the research silos.

There are still problems though. While it is great that we now have the recipe for success. We are still lacking some critical ingredients. For example, while the NCI can demand that the research they fund fits within these pathways and is translational in nature they don't have any authority to do so. It turns out that the NIH actually sets the standards and guidelines for what research is funded and how it is evaluated. Until the guidelines change, there is little meat behind this idea. There is no carrot on the stick. Right now, research is not funded on whether it can translate into the clinic. It is funded on the merit of the research as it sits alone. Until researchers are funded (and only funded) by how their research fits into the translational picture I fear they will continue to work the same way.

The good news is that there are grants that are starting to appear and the carrots are significant. The NCI has created a mechanism to help move truly translational research forward. Although there are just a few awards to date I truly believe that it is the wave of the future. If you want to get funded by the NCI you are going to have to show how your research will translate into the clinic. In this sense, they are hastening a significant change.

I was honestly, and pleasantly, surprised at how much purpose the NCI has.

Tuesday, November 11, 2008

Waiting, waiting, and waiting

Good morning! Well, if you are waiting for some results you are much like me - still waiting. This is always such an issue. The waiting is the worst. And, universally, it becomes much, much worse when you have been told you would hear something and you still have not. It is at that point in time when the paranoia starts to set in and the incessant questioning begins. "Why have they not called? They said they would. Did they find some thing? They must have." From that point the line of mental questioning and the possibilities of what could be wrong grow exponentially. This is a lesson for all of you future (or current) oncologists. The waiting is torturous and many, many times worse than the reality. In fact, I would always put it in this perspective - "If it were your child, would you want to know?" I think you will find that you would almost never, ever want to wait. This is, of course, my opinion, but I know that it is one that is certainly shared by most if not all of the parents I know.

So, we wait.

My purpose, however, plugs on.

Monday, November 10, 2008

The Big Day

Well, here we are at Cook's in the outpatient surgery wating area. We arrived at 6:30 AM and have gone through all of the usual sequences of events. Unfortunately, it seems like everyone is running a little late so they did not take her back until about 8:20 AM. This has me guessing that we will probably know something in about 30 - 45 minutes assuming all goes well. All in all, this has gone pretty smoothly. I certainly can't complain. As usual, I am just anxious to get to the bottom of all of this.

I should also tell you that my trip to Washington, D.C. for NCI Translates was an incredible experience. I am not really in the mood to go into the details, right now (I have Sydney on my mind.) However, I will tell you that has been transformational for me. In some areas it has solidified my thinking regarding neuroblastoma research and in some other ways I have been enlightened to new ideas and perspectives. I can tell you this. I viewed research that spanned just about every cancer. This event was representative of the entire cancer population. I can also tell you that, if anything, neuroblastoma was over represented. Yes, you heard me. Neuroblastoma research projects accounted for anywhere from 5 to 15% of the abstracts that appeared in each of the sections in which I participated. That is a huge number considering the fact that this was not even a pediatric population that we were looking at. This was all cancer - breast, lung, prostate - you name it. Our neuroblastoma research is something to be proud of. Our investigators are clearly leaders in the cancer world. Ironically, Sydney's vaccine trial was a big subject at the meeting. I actually met with some of the researchers behind her study. It was a shock for both me and them.

Well, more later. My nervousness is now taking priority over my writing so I think I am going to focus back on my anxiety now.

I have purpose on the brain.

Friday, November 7, 2008

Preoperative success

Good morning. Well, before I head off to Washington D.C. for the NCI Translates meeting I wanted to give everyone a brief update on Sydney. This will probably be the last time you hear from me until after her procedure early Monday morning. Yesterday we took Sydney to the clinic for her preoperative check up. I am happy to say that she was found to be perfectly healthy and normal. As far as the whole neuroblastoma thing goes, she appears to be asymptomatic. Her CBC was normal and everything checked out. There were no outward signs of something amiss. In my book, that is a vote of confidence going into this surprise set of bone marrows on Monday.

Based on my email many people seem to be very curious as to what I really think about this whole strange lab result that we sent to Texas Children's. Truth be told, I still do not know what to make of it. I am anxious to confirm that it is not neuroblastoma that is causing this rather strange laboratory finding. I still don't think it is the cause. It just doesn't make sense to me. Although, I certainly understand that we have to rule out the possibility that the vaccine is doing exactly what it was hoped it would do:) I still think it is probably related to something else, perhaps a virus of some sort. A flair up of EBV would probably be the most likely catalyst but I am still suspecting something else at play. I have no medical rationale behind that statement. This is my gut feeling at play. Something is out of whack. I just have not put my finger on it as of yet. I know I don't have all of the answers but I also suspect that I don't have all of the facts as well. There you go. See, I know absolutely nothing.

Sydney and I had a pretty good time in the clinic as usual. We started with working on her vocabulary. She hates this activity. I would think pulling teeth would be higher up on her to do list. There was lots of fighting but I tried to keep her entertained as we struggled through the cards. Something must have worked because she came home from school later that day with a 101 on her test. However, I know full well that she won't attribute her score to any of the time that we spent in the waiting room at the clinic. It was not long before she grew tired of vocabulary and was off to creating crayon masterpieces. This worked out well as I had roughly 30 email messages waiting for me on my iPhone. After a short while we were back to clinic stuff. We had the opportunity to meet the new nurse practitioner. It was quite a treat. Angi is clever and had no problem dealing with the Dungans (Well, I guess I should say Dungan - singular. Sydney and Lynley are both pretty easy to deal with in general.) I was surprised that they would throw her to the sharks so early in her career. None the less, she handled us aptly - so well, in fact, that we had no need to see an oncologist. I was not sure whether Dr. Howrey was glad that we left without seeing him or a bit disappointed. Knowing what a headache we can be I think he was probably secretly relieved.

Finally, I want to thank everyone for their kind messages. I think I received around 20 email and messages yesterday from those that follow the diary. I genuinely appreciate your kind words. I don't know that I am dealing with it any better (not that it matters how I feel). It is just that having a 3 year old of my own I can't shake the imagery out of my mind. I keep thinking of Ainsley in that position. It makes me physically sick. I am happy to say, however, that she is now surrounded by our loving family and seems to be coping very well especially given the awful circumstances.

Well I had best be off. I have exactly 31 medical abstracts to reread today. That is a lot of medical jargon to absorb at 5:00 AM in the morning.

Stacks of purpose await.

Thursday, November 6, 2008

Sad, sad, sad

You will have to bear with my lack of a response this morning. In the midst of everything that is going on with Sydney we have had a horrible death in the family which has left my gut churning. I have had this feeling before and know it all to well - overwhelming emptiness, sadness, and despair. It turns out that one of my cousins passed away at home. This is bad in and of itself but it becomes much worse. He was also a single parent of a 3 year old child who was home alone with him. It took several days before his body was discovered by his sister. The 3 year old child was dehydrated but survived on some Halloween candy that she had found around the house. I can't think of anything more sad.

I don't have anything else to say.

My purpose is hard to grasp today although I desperately feel the need to hug and hold my children.

Wednesday, November 5, 2008

A Translational Tangent to the NCI

Everything is scheduled. I heard from Dr. Eames on several occasions yesterday. Sydney is all set up for her bone marrow aspiration and biospy first thing on Monday morning. She will begin the process with a clinic visit tomorrow morning for a preoperative checkup. Dr. Eames was nice enough to coordinate this for me as I will be travelling from Friday through Sunday to Washington, D.C.

I am serving as an advocate for the NCI at the NCI Translates convention. It should be a very, very interesting trip and I am really looking forward to it. The whole purpose of this meeting is to evaluate the NCI's entire portfolio of cancer research and to prioritize it based on how well it can be "translated" into meaningful treatments. The entire purpose of this meeting is to accelerate translational cancer research. Our job as advocates is to bring our consumer perspective into the process. Their belief is that our input will help them identify and focus on what is really important and provide the necessary sense of urgency to move forward quickly. It is also the hope that we will bring relationships and knowledge from the outside of both NCI and non-NCI related activities into the discussion.

I often see and hear people complain that people aren't doing enough when it comes to cancer research. I have seen people blame the COG, the NANT, the NCI and even individual institutions like Sloan Kettering and St. Judes. I have heard people claim that the doctors and researchers don't care - that they are only in it for their own intellectual pursuits. I have heard many claim that they don't care about the children. I am here to put my foot down and to say that is WRONG. It simply isn't the case. I have met many researchers and physicians over the years (1000s) and I am yet to meet one single one that was not passionate about creating a change for our children - even a few that did not even do research in pediatrics. The problem is not the people. They are committed - at every level. I have been advocating for years and with the exception of one single issue (which I see both sides of) I have seen constant change as the medical community has made changes to move faster and more efficiently. There are problems with every organization but most of it has to do with bureaucracy and less to do with research. They are working hard to create change at every level.

Are there problems?

ABSOLUTELY! There is lack of funding? And, in our case, patients? There are political pressures extraordinaire. There are issues (in our eyes) of prioritization. There are problems with the pharmaceutical industry and the insurance industry. And, don't forget what a mess the legal system has introduced into all of this. But, don't doubt for a single second that there aren't thousands of well respected scientists and physicians that are out there fighting for our kids everyday trying to make a difference where they can.

Wow, so that was a tangent. Sorry, I am a passionate guy.

That is what purpose does to you. Bring it on.

Tuesday, November 4, 2008

International Neuroblastoma Vaccine Star

Good morning - 2 days in a row! Yesterday was a truly great day. The kiddos were back into the swing of things. As much as I miss having them around during the week, it was a good thing. I was wall-to-wall busy. I just have 101 little to do items that keep piling up and I finally just had to sit down and concentrate on getting them out the door. You name it. It was everything from shipping cookbooks to reviewing marketing meterials. It was a complete day. I guess I had good karma from working so hard on my "should-have-done" list because yesterday I finally heard back from Dr. Eames. For the record, I was right. She was out of the office all week - something about saving kids lives on the floor. She even spent part of her time out of town. She felt really badly about not contacting us sooner but we completely understand. Had we thought it was something that required immediate action we would have found a way to get a hold of her. We were content - a little anxious - but content. I guess the most important thing was that we got answers. It turns out that Dr. Eames is in the same line of thinking as ourselves. We will send Sydney's blood off soon and we will coordinate it with a bone marrow biopsy and aspiration. We are running out of days this week because labs have to arrive at TXCCC before Thursday on any given week. I am guessing that it will be scheduled on Monday, Tuesday or Wednesday of next week. Get ready! It will be an extremely nail-biting time.

I mentioned yesterday that there was an article on Sydney's vaccine trial that had just been published. Yes, it is making its rounds internationally. It is all over Google. There is a great, simple, and to the point version of the article here:
For those of you that are interested, I also have a PDF of the actual journal article itself. It is a very technical read but very interesting. Sydney is patient 9 on this study and you can actually see her in a chart. Of course, it does not mention her by name but it is very clear which patient she is. I also find it very interesting to see in the article how excited they are that they have been able to identify the vaccine so far out - 18 months!?! This is obviously one of the reasons that they are so excited about Sydney results. Perhaps we can help ask the question - why?

Well, I am off. This is Lunch for Life Cookbook day. I have to get everything off to the printer - only 99 more todos left.

Off to purposeville.

Monday, November 3, 2008

We survived Halloween

Good morning! I am finally able to say those very words on a morning where I actually have cable, phones, and the Internet. I feel alive. In the end, it turns out that the problem with my Charter services was very complex. It turns out to be the exact same problem that I identified for them on the very first day of our outage. Furthermore, the solution to our problem was also the very same solution that I pointed out on that very first day. In the end, 9 technicians came to our house and we had at least 4 other line technicians visit. Each came with false information and were not adequately prepared to solve out issue. It was the last line technician, 16 days after our outage began, that actually followed my instructions and was able to identify and fix the problem. In the end, I can only tell you that it was not the technicians or the support personnel that were flawed. It was the system and the inability for Charter to communicate internally. This is a management problem, not one of incompetence. Sadly, this issue shows no signs of change. I was blown away by the number of individuals within the company who recognized these issues and were still unable to work around them. My advice - find another cable, Internet and phone provider. Charter Communications is not capable of providing reliable service.

Now, onto happy subjects - Halloween. Can I tell you how much fun my kiddos had? They had a blast. They had a blast traipsing around the neighborhood but, honestly, I think they had far more fun handing candy out at the door. Here are a few pictures so that you can share in our fun.

The Halloween Twerp Crew

Ainsley Alley Cat (before candy)

Ainsley Alley Cat (after candy)

Now, you may think this last picture was staged or perhaps Ainsley was laying next to the toilet for some other reason. No, Ainsley is a candy junky and this is what happens when you sneak away with your candy and try to eat as much of it is you possibly can. I hate to say this about my own daughter but something tells me that this will not be the last time that I find her curled up next to the porcelain thrown. This seems only to be a precursor of things to come.
Well, as usual, I can talk for hours if given adequate opportunity. On Friday, we also had a city water line burst in our front yard which is another story in and of itself. We continue to chase answers on the findings to Sydney's last vaccine lab draw and, in a strange and somewhat ironic twist of events, they published a journal article on this very same vaccine study over the weekend. Finally, there is a ton taking shape with Lunch for Life.

Yes, I could go on and on and on.
It will have to wait until tomorrow.
Today I have purpose to get to.