Tuesday, March 31, 2009

The paranoia of impending scans

How come, every time we are approaching scans, my children become symptomatic? I guess I should be happy that they exhibit symptoms as we get closer to scan week instead of farther away but, none the less, it is like clockwork and it is always enough to cause distress. You might be thinking that Sydney could be aware of the upcoming scans and might be exhibiting these symptoms because of worry. Nope. I haven't even told her that scans were coming up in two weeks. In other words, these symptoms may be mental but not, at least, for that reason.

I could make some sarcastic remarks like "at least her legs aren't bothering her" or "at least her stomach isn't hurting", or "thank goodness she isn't pale". But, you all know me well enough by now to know that is pure sarcasm and all of which must be true. So what, really, is the point.? Do I think this is a relapse at this point? No. Am I scared, worried, and sleepless? Of course. It is only natural. Let's face it. The 1000 pound elephant is always in the room. Even normal is terrifying.

Perhaps the issue is that I become more sensitive as we encroach on scan week. Perhaps, my mind starts focusing on everything that could be wrong. Maybe I am the mental one? Maybe it isn't Sydney at all?

Anything is possible.

Purpose can clearly cause paranoia.

Monday, March 30, 2009

Weekend of questions

Good morning! Well, I am happy to report that the Dungans are all doing well. This weekend was fundamentally no different for us. There were lots of chores around the house and a fair amount of to keep me busy. Believe it or not I am working on two research grant proposals. What can I say, it is the research nerd side of me. The other surprise of the weekend was a high volume of calls regarding the ch14.18 antibody. Thankfully, I was able to get much of this done without giving up too much time with the kiddos. We had fun despite the seemingly hectic schedule and questionable weather.

The ch14.18 antibody is a truly difficult issue for many families right now. There are so many kiddos that are in that window where they need the antibody right now but can't get it because it is still under FDA hold. Families not quite at that point are concerned too. They are wondering whether they will be eligible for the antibody when it becomes available again. The most common questions I hear are (a) when will the antibody be available and (b) will I be eligible. I wish I could tell anybody that I had the answers. There just aren't any as of this moment. Unfortunately, I also don't know when there will be.

It is a very complicated topic. I have heard many raise their voice in protest that this must be an issue with the COG. That is a wrong assumption. There are issues involved that we as families have not even begun to consider. Believe it or not, reopening the trial and getting the drug into kids is not really under the control of the COG. While the COG is integrally involved in the decisions, it is ultimately up to the FDA, CTEP and the NCI to give them the go ahead to move forward. The COG will not be able to move until these other groups agree on the proper course of action given several different issues. Bottom line, the COG is as anxious to get this trial back open and this drug flowing back into high risk kids as we are. To a certain extent, their hands are tied.

So, what does all of this mean. Well, it means we don't know when the trial will be available or for whom. I am quite sure that the eligibility criteria will be even more strict than they were before the FDA closed the trial. The FDA will certainly require certain restrictions to protect our kids and to try and prevent further restrictions. While this is great for the safety of the kids that are eligible to receive the therapy, this will be a problem for those that find themselves ineligible. My suggestion is to position yourself. Find out if your child is likely to be eligible - ask your oncologist. Keep an ear out for news on when the trial will open and check to see if you will fit within that window of opportunity. If you don't see your child fitting into either one of these criteria then I would start investigating other alternatives. It is as simple as that. I wish it weren't but, if I was in that position, that is exactly what I would be doing.

It will take purpose.

Friday, March 27, 2009

Tae Kwon Twerps

It is official. I am now outnumbered and quite possibly out powered. My two eldest twerps have officially achieved their yellow stripe belt.

This is their first step in a long journey to take over Dungan household and quite possibly the world. It was a unique experience and a great learning one for the kiddos.

First off, this was a belt test for everyone that received an invitation. That meant that there were many people present of different skill levels. This was the first time that Sydney or Graham had seen this. Sydney was taken by total surprise. In fact, it caught her completely off guard and sent her into a state of complete nervousness. She was frozen with fear that people would laugh at her. That was an unwarranted concern as everyone was just as nervous and concerned about their own belt tests but that was of non consequence to her. It actually took a private conversation with Lynley out in the hallway to convince her to step on to the mat. For me, I liked this kind of challenge. This is exactly what Sydney needs. While I hated to see her struggle through this, I also knew it was the only way she would learn to overcome this type of adversity. It is one of those things you have to experience in order to learn to succeed.

Once on the mat, it was an utterly different story. First, I should probably paint the scene. There were approximately 20 Tae Kwon Do'ers participating in the belt test. Additionally there were probably another 40 to 50 people in the gallery watching the belt test. All of the instructors were in full dress. It was very official and very different from their normal class of 4 or 5 white belts. The pressure was on. If that was not difficult enough, Sydney, Graham, and another little boy were selected first for their belt tests. Their they stood, the 3 of them alone in the middle of the mat facing the 4 black belt instructors as everyone looked on. I would have been nervous. How about you?

Surprisingly, both Graham and Sydney were in the zone. From outward appearances you would have had no idea that they were performing for a room full of 60 people. Both Graham and Sydney did wonderfully. As usual, I could not have been more proud. Their technique was smack on. They were sharp. I was even amazed to see that both did an excellent job on their roundhouse kicks. Sydney's kick was six inches higher than I had seen it before and Graham had done away with the awkwardness that we had seen before and had instead replaced it with a respectable roundhouse kick. There was not a moment in which I thought they could have done better. I was one proud papa. At the culmination of their demonstration they instructors awarded and changed their belts. This was a defining moment for the Tae Kwon Twerps. They have learned that hard work pays and that you must face your fears. This is but two steps in the right direction on a very long road but one in which I am confident that they will be prepared to succeed.

I was not alone in purpose yesterday.

Thursday, March 26, 2009

My wife has left me

Good morning! My wife has left me. Okay, perhaps, that sounds a bit too strong. Actually, my wife left for Austin this morning with two men. Okay, perhaps that is still too misleading. My wife who had a technology conference in Austin this morning left very early this morning with two coworkers. I expect my blushing bride to be back in my loving arms later this evening. However, that still leaves me massively outnumbered by the small, but ever agile and sneaky, band of twerps.

Not to worry, though, twerp wrangling is my specialty - a gift if you will - and I am already planning my defense.

This is also the day of Sydney and Graham's belt test. Today they will be tested for the first time to see if they are deserving of a little color on their uniforms. I fully expect them both to be awarded their new yellow and white belts. For the most part they have both mastered their skills. Sydney is no doubtedly a weapon and I am surprised at the strength of her blows. She does have power. Her technique has improved greatly and, with the exception of have a fairly low roundhouse kick, she is perfect. Graham is doing well too. However, his roundhouse is still a bit awkward. It is a funny thing actually. We he first began learning his roundhouse they told him to turn his shoulders in an effort to get him to turn his hips. Unfortunately, he took this to mean his head. For the lives of everyone, we can't get him to stop turning his head around backwards. The best way to describe it is to tell you that, before Graham even begins to kick, his head is turned 180 degrees away from the target. He is literally looking behind himself. Regradless, I am hopefil that we will be able to get him through it. He seems to have mastered everything else. He knows his blocks, punches, other kicks and his korean words. Their test is at 5 to 5:30 and Lynley will be racing back to see them.

As a follow up from yesterday's entry, I heard from the mother of this other child with CRMO. She was at home with a sick child yesterday and told me that she would try to call today. I doubt that I will find a definitive answer that is undeniable proof of what this is in Sydney, but it could help me move in the right direction. None the less, it is good to hear that someone else has faced these issues. Perhaps there is a commonality.

It will be another full day of purpose.

Wednesday, March 25, 2009

CRMO: acronym for peace?

Good morning. This morning I find myself truly at a new place in Sydney's diagnosis of neuroblastoma. My mind is racing because of something that I thought I would never find (simply because I have talked to nearly every expert in the world to no avail) has shown up very unexpectedly on my doorstep.

It should not surprise you that not a single day goes by that I don't think about Sydney's neuroblastoma. I can't recall a day that I haven't thought about either the lesion on Sydney's arm or the original lesion that appeared on her leg that led us into the world of our supposed relapse over 4 years ago. I have been yet to conclusively prove that those lesions were (are) neuroblastoma or whether they were(are) something more benign. To this day it has been a complete unknown and while I have heard of other similar cases on occasion I have never been able to identify another child - at least one beyond rumor. I think the biggest reason for my consistent and ever present worry is the lack of knowing what the lesion is. I know it could be neuroblastoma. I also know that it could be something else. However, I have never had a definitive "what else." I have never has anything else to potentially call these lesions. I never had a differential diagnosis. I never had another child that I knew was similar. This only added to my worry.

Yesterday, very much by accident, I ran across a posting by another family who had a child with stage IV neuroblastoma who has also had multiple lesions very similar to Sydney's. This family has been through the multitudinous scans and the threats of relapse even more than Sydney and our family. Each time they received similar results. Bone scan and MRI showed an abnormal lesion or lesions. Everything else (marrows, MIBG) came back negative. Even after going through open biopsies, they were never able to confirm a neuroblastoma relapse. Sound familiar? Eventually they were diagnosed with CRMO or Chronic Recurrent Multi focal Osteomyelitis. It appears that this is somewhat of a catchall condition for something that is not completely understood. But, it is something. It is a name. It is a differential diagnosis. I have written the family to find out more about their diagnosis and history. It is still early but I would be lying if I did not say that I was excited by this. I don't know that this is what Sydney has but this is the first time I could ever identify a specific condition or a specific child which could help to explain Sydney's lesions.

CRMO could be some peace. It could be an answer. It could be an answer for my purpose.

Tuesday, March 24, 2009

The belt racket

Good morning! Well the kiddos went back to school yesterday. I am happy to report that they all came back with a smile on their faces and happiness to be back in the swing of things. I know that is wonderful but I would still love to hear that they missed not being with their Mommy and Daddy and they pined away for us for at least a few minutes. What can I say? I am a sappy dude.

After school we all went to Tae Kwon Do and tumbling. I am extremely proud to announce that both Graham and Sydney have been selected for their belt tests to go to the next level. I should say I "was" proud to see them be invited to their belt testing. That was, of course, until I read the fine print which also stated that there would be a $50 per twerp fee for their respective belt tests. Wow, what a racket! I was less than pleased to see that but, none the less, I am happy to see them move up. I guess you could say I have a $100 smile.

I am still working on pictures of our rock climbing adventures at the school. It seems the camera has gone missing. None the less, once we dig it up I will post them.

For now, it is off to a very important day of purpose.

Monday, March 23, 2009

Animals at the zoo?

Good morning! It has been a busy weekend around the Dungan household. The last spring break weekend was capped off with a family trip to the zoo. Honestly, I love going to the zoo. Frankly, we all do. We have a great time. You may think that the kiddos love to go to see the animals. Nope. In fact, I think they are more entertained by the squirrels than the cheetahs, the lions, or the elephants. Nope, my kiddos go to the zoo to ride the train, to play in the fun house, and, most importantly, to rock climb. I think this is a very important note for any of you that are looking in to starting you own zoo. It apparently has nothing to do with the animals or the conservation effort. Who would've thought. I have a few pictures that I will try to post a bit later when I have some more time.

On a side note I have received many questions regarding my post on Friday. I just wanted to let everyone know who was interested that there is a series of articles on antibodies on the CNCF website (http://www.nbhope.org) . They provide a pretty good overview and will give you a thorough understanding of what you need to know as a parent. They can be found here:
Purpose and a pen, watch out.

Friday, March 20, 2009

Ch14.18 Increases Survival!

Without a doubt in my mind, this is the most significant discovery for children with neuroblastoma - certainly since Sydney was diagnosed, surely in the last decade, and quite likely in the history of the disease. Yesterday afternoon the COG publicly released a statement regarding the early study results of ANBL0032 (A Phase III Randomized Study of Chimeric Antibody 14.18 (Ch14.18) in High Risk Neuroblastoma Following Myeloablative Therapy and Autologous Stem Cell Rescue.)

In it they state that the immunotherapy (experimental) arm of the study – a combination of ch14.18 antibody, cytokines (IL2 and GMCSF) and Accutane more effectively reduces the risk that neuroblastoma will grow back than treatment with Accutane alone. Furthermore they have determined that the immunotherapy, as specifically delivered on COG ANBL0032, increases the chance of survival after completion of therapy including stem cell transplantation when compared to treatment with cisRA alone. According to the statement they now expect that this immunotherapy may eventually become a standard part of high-risk neuroblastoma treatment after stem cell transplant.

For more information, the complete statement can be found here:

You may recall not to long ago that I was still beating my drum in my blog about antibodies. For years I have stated that I have seen kids with neuroblastoma. I have seen kids with neuroblastoma be treated with antibodies. And, that I have seen their disease disappear. My argument has always been about response. I have seen responses. This finding is much different. This finding is that they have not only seen responses but they have seen a significant increase in survival. Not only did they see an increase in survival but it is clearly dramatic enough that they were able to stop the trial early (3+ years early). This is proof for parents everywhere that ch14.18, when given after transplant with GM-CSF and IL-2, significantly increase survival.

In all do honesty, this finding does come as a little shock to me (as well as many others). You may remember that I commented here not to long ago that I did not see how there could be a dramatic change given the results of A3793 which included many of the patients on this study. No one could see the math working. We could envision the possibility of a long term survival advantage but nothing, nothing like this. These results blew the roof off the study and I, for one, could not be more ecstatic. After all, Sydney participated in this study and was lucky enough to be randomized to receive the ch14.18 antibody.

Since finding out the news my mind has been racing with questions and thoughts on how this result will change the face of neuroblastoma. One of the most urgent concerns I know for most parents will be "How do we get the antibody?" At this point, that is clearly a difficult questions to answer. While I presume they will amend the study to remove the randomization so that all kids receive the ch14.18 antibody that is but one step in the right direction. You see, currently the trial is on hold by the FDA while they review some recent toxicities. Right this moment, no one can get the antibody on this trial. Secondly, even when the antibody becomes available where will you be able to get it? Only about half of the COG institutions offer the therapy. Each of those will still have to get the ammended protocol changes through their institutional review boards (IRBs). Institutions that did not have the antibody will still have to not only do that but also go through some fairly extensive staff training. Third, it isn't like an unending supply of this mouse stuff is sitting in a big vat somewhere. There was a limited supply for this study and only for the number of kids that were going to be randomized. They will have to make more - although I am sure they are already working on that. Wow, I could sit and write questions all day. Unfortunately, I guess we will all have to just hold on to our britches for a bit longer while they work diligently to sort this all out. This has far reaching impact.

On another note, while I feel tremendous happiness that we were randomized to receive this antibody I also feel deeply for so many friends that participated on this study but were randomized not to receive this antibody. I know it is a bitter sweet day for them leaving even more questions floating through their minds. I thank them all for their participation and I know that there will be 1000s of kids and families who follow that will feel that way as well. Randomized phase III trials can be both a blessing and a curse. They are a blessing when they can provide a clear answer as to which treatment may be best, as they did in this case. Now we know for sure that more kids will live because of this study. However, they are a curse because ultimately half of the children were randomized not to get the treatment that was later found to be important. In that sense, it is tremendously unfair. And, it is for those families that I am tremendously appreciative.

Purpose can be bitter sweet but, for all those that follow, today is a better day in the world of neuroblastoma than yesterday.

Thursday, March 19, 2009

Another Plug

There was a question that was posed as to the importance of the work that was being done in neuroblastoma with the World Community Grid. I realized that while I understood the importance of the target proteins they were trying to hit, I did not necessarily understand how all of the pieces fit together. This gave me an excuse to do a little research and another opportunity to get in another plug for this project. Remember, you can sign up here:
There is actually a great description of why this work is so valuable on the About page for the project. I have provided it below so that you can see how incredibly cool and important the work your computer is doing.
It has been demonstrated repeatedly that the function of a protein molecule - a substance made up of many atoms – is related to its three-dimensional shape. Scientists are able to determine by experiment the shapes of a protein and of a drug separately, but not always for the two together. If scientists knew how a drug molecule interacts with a target protein, chemists could design even better drugs that would be more potent than existing drugs.

To that end, the project's researchers are using computational methods to identify new candidate drugs that have the right shape and chemical characteristics to block three proteins - TrkB, ALK and SCxx, which are expressed at high levels or abnormally mutated in aggressive neuroblastomas. If these proteins are disabled, scientists believe there should be a high cure rate using chemotherapy.

The researchers have prepared a library of three million compounds - or potential drug candidates (called ligands) - and will use World Community Grid to simulate laboratory experiments to test which of these compounds block these proteins. Simulations will be conducted using Autodock, a suite of tools that predict how large numbers of different small drug molecules might bind to TrkB, ALK and SCxx, so the best molecules can be found computationally, before they are selected and tested in the laboratory for efficacy against neuroblastoma.

In the absence of World Community Grid, researchers would have to undertake their investigation through individual docking simulations, which would take approximately 8,000 years to complete. With World Community Grid, analysis can be carried out for thousands of drug candidates in parallel, allowing high throughput screening to be conducted. Researchers estimate this will reduce the time required to about 2 years.

This added level of speed and sophistication could potentially enable researchers to identify new drug candidates for neuroblastoma, thereby facilitating discovery of prognostic clues, which are not apparent by human inspection or traditional analysis alone and could advance the fields of cancer biology, drug discovery and therapy planning.
See, I told you your computer could have purpose.

Wednesday, March 18, 2009

The hidden benefit of worn out twerps

Good morning! Well, here it is day 3 of spring break. Miss Claudia has made a comfortable transition back into our lives and, from what I can tell, all has been going smoothly. From my perspective it is a bit hard to tell exactly how smoothly things have been going. For the last two days the kiddos have been on field trips around the city. I am glad that they are getting great opportunities to get out and explore but it leaves me a bit in a quandary as to what level of tomfoolery they are presenting to Miss Claudia. I have no doubt that she can handle anything that they throw at her. I just want to make sure the they are doing as told and behaving well. I seem to remember a few times last summer when Sydney was being difficult because she felt the rules where too "baby" for her to follow.

Look, let's be honest, I finally found someone who willingly chooses to take care of my kiddos. I don't want to ruin this opportunity. Besides, we need Miss Claudia for the summer. I don't want to jeopardize that. I need well-behaved, cordial twerps. We can't put our summer child care in jeopardy.

Okay, so there you have it. We are down to the brass tacks. I am worried that my kiddos will behave badly and the fact that they have been out and about out of ear shot is a little scary. It isn't that I don't trust Miss Claudia. I do, completely. If anyone can handle them she can. However, she also has a choice with what she does over the summer. We need her.

I guess the good news is that she has been taking them out on field trips and wearing them out. By the time they get back to the homestead they are completely wiped out. They are too worn out for twerpdom.

Hmm. Maybe I can learn something from this little activity. I don't know for sure what today holds but I guess I can't be too upset if they head out the door early. Maybe these little field trips are actually our saving grace.

Apparently Miss Claudia is even more skilled than I gave her credit.

My purpii are in capable hands.

Tuesday, March 17, 2009

Fight neuroblastoma with your computer

Using your computer to fight neuroblastoma in it's spare time - of all of the people in the world, I should have thought of that. I didn't! But thankfully someone else was using their brain while I was sitting down on the job.

You may remember that last year I traveled to Chiba, Japan for the 2008 Advances in Neuroblastoma Research Convention. It is a biennial event where researchers from all over the world present their neuroblastoma research. The committee chairman for this latest event was Dr. Akira Nakagawara, a well known neuroblastoma researcher throughout the world and the principal investigator at the Chiba Cancer Center Research Institute. He has been a part of several important discoveries in the neuroblastoma world, most notably the discovery of TrkB (a protein expressed on aggressive neuroblastomas.)

Dr. Nakagawara has teamed up with IBM and their World Community Grid to form the the new Help Fight Childhood Cancer project which uses the idle computational power from volunteers' computers to identify which of the three million potential drug candidates prohibit growth of three proteins (TrkB, ALK, SCxx) believed to be key in the progression of neuroblastoma. It would take approximately 100 years using their own computing resources to make progress, but with access to the World Community Grid (one of the world's largest virtual supercomputers), they estimate to complete this project in 2 years, and begin laboratory trials.

We have the potential to find a drug treatment for neuroblastoma, and it's the volunteers who sign up to allow their computers to be used coupled with innovative grid technology that can make the difference. Signing up with World Community Grid is an easy and free way to join almost a million devices around the world being used to help researchers join the fight against cancer.

To become of member of World Community Grid and donate unused computer time, individuals register on www.worldcommunitygrid.org and install a free, small, secure software program onto their computers. When computers are idle, data is requested from World Community Grid's server. These computers then perform the computations, and send the results back to the server, prompting it for a new piece of work. A screen saver will tell individuals when their computers are being used.

Please sign up and help make a difference in your computer's spare time.

It is spare purpose.

Monday, March 16, 2009

The Sanity of Clear Skies

Good morning! You never know how much you miss the sun until it has been raining for an entire week. The kiddos were beginning to go stir crazy. If you only have 1 or 2 children this may not seem like a significant event. However, once you have graduated to 3 (and I am sure more) it goes from being a slightly cooped up environment to a full fledged loony bin. Of course, I mean no disrespect to loony bins. After all, I most likely will end up in one. I just prefer not to live in one without force.

I am amazed by the effect of being cooped up has on the gentle psyches of the twerp brigade. It is funny because the days always start with communal living sibling perfection. The are not only nice to each other but they actually border on considerate. They are thoughtful. Not only do they play together but they even help each other clean up. Contrast this with a few hours after being cooped up and you end up with the most vile, lecherous, heathens imaginable. They go from throwing kisses to throwing punches. It is beyond my ability to comprehend how this behavior could possibly be coming from the same children who were such incredible models of sibling bliss a few hours before. I just don't get it. I don't know what changes and I don't know how it changes. However, just as the storm brews outside, so does the one indoors.

1 or 2 days of that is quite enough to send even the casual observer off of the deep end. But, even as a twerp management professional, 3 or 4 days is enough to leave a void of common sense and sanity in even the strongest of minds.

The beauty of all of this, however, is afternoons like Sunday. For the first time in as many days as we could remember, the sun finally peeked through the cover. The doors opened and out went the kidlets. At that moment everything chaos was sucked out of the house and the freshness of spring and sun came flooding back in. Almost as quickly my offspring had returned to their somewhat sane selves. They were back playing together and meeting each other with hugs instead of fists.

It is a strange metamorphosis but one that was deeply appreciated.

Sanity has returned to our lives - at least temporarily.

Today Miss Claudia returns to Dungan manner to spend the week with the kiddos during Spring break.

I have a feeling she will need all of the purpose she can muster. Let's hope for clear skies and clear minds.

Friday, March 13, 2009

A night on the town

Good morning! Yes, I received another nasty gram for not writing yesterday morning. It was not that I did not want to. On Wednesday evening I received a call from one of the neuroblastoma investigators that was in town for the COG meeting. I ended up grabbing a coat and heading out in the rain. I met them for dinner and, the next thing I knew, it was nearly 1:00 AM before my head was hitting the pillow. Suffice it to say, I am not used to keeping those hours. My schedule was a bit disturbed.

Although most of our talk was about neuroblastoma and many of the exciting new research discoveries, there was also quite a bit of time when we were playing games. Yes, you heard me. How nerdy am I? I must admit, it was a bit strange but there I found myself playing Password in the middle of a restaurant with some of the biggest brains in neuroblastoma research. I can't say that I have ever done that before. That was certainly a new one for me. Thankfully, I was pretty good and spared myself from being the fool. However, I am still thinking of a good way to describe the word 'utopia'.

After dinner and games it was time to head back to the hotel. We spent several hours chatting about everything neuroblastoma under the moon. New discoveries, new research, new priorities - it was like Mecca for me. Truth be told, I could have stayed there and chatted for days. I don't know what that really says about me. Perhaps, I am a little obsessive about this whole cancer thing. None the less, I continue to find it fascinating. I am amazed by the opportunities and love the challenge of trying to help find the answers. There is so much on the horizon.

So, to make a long story short, I was not up as early yesterday morning as I usually am. I simply did not have the opportunity to write in my diary. As soon as my body was back in a vertical position, it was all about getting the twerp brigade dressed and off to school. That was then followed by a trip to the dentist in which a received a stern lecture about not flossing enough. After that it was back to the grind and a race to get a series of articles out and begin setting up online registration for the CNCF conference.

It was an extremely busy day of not writing in my diary.

The day following a night of purpose is often chaotic.

Wednesday, March 11, 2009

Despite so much neuroblastoma, twerps are awesome

Good morning! While I have received some great email (and lots of it) in response to my last few updates regarding neuroblastoma, I have also received some nastigrams from family members who want an update on the twerps. I find it ironic that they have completely forgotten that this is my diary and I get to write about whatever subjects I want to. What can I say? This is an incredible time in neuroblastoma research. In fact, there is so much going on that you would be in complete disbelief. There is a neuroblastoma storm a brewin'.

Regardless, knowing that there is so much incredible "research talk" coming down the pike I figure I must share an update on the kiddos. In short, they are awesome. All have made complete recoveries and have happily reintegrated into their post strep lives. I guess the best part has been the weather. Each evening they have delighted in the back yard as I have quietly typed away on my keyboard in a lawn chair. The temperature has been perfect for them to get back into the swing of playing on the trampoline. Hours go by as Sydney carefully choreographs their every move. While there is some jumping, by and large, it is timed movements running across the trampoline in unison. I don't really understand the purpose but am somewhat impressed with the choreography. Singing and dancing in the evening, cocktails and a show - it doesn't get much better than that. The rest of their time seems to be focused on playing make believe in the back yard. In fact, they have gotten good enough that I am sometimes curious as to whether I have a herd of twerps or a litter of puppies. None the less, it is clear that they are having a wonderful time and that their imaginations are running wild. It is healthy, happy stuff.

Well, I had best be off. There is a mountain to climb.

My purpose will be with a pen today.

Tuesday, March 10, 2009

Seeing the trees in the MIBG forest

One of the great things about the NANT meeting is that it is an in depth look at very specific research. The amount of research that has been done on any one subject is extensive. It is one thing to go to a seminar and convention to hear about one study on a topic but it is quite a different experience to here about 10 different studies on that same subject one after the other. I am not just talking about neuroblastoma either. Let's take MIBG therapy, for example, as it has always been a subject which intrigues me but not one that I have written a lot about. You can go to a convention or seminar and hear a presentation on MIBG. Maybe if you are lucky it might even include information about a particular clinical study. At the NANT it is completely different. You will likely here everything that was ever known about MIBG. In one sense it is a comprehensive overview of every preclinical and clinical study on MIBG ever known to man and the important research nuggets of information that are needed to make decisions. You get a very good understanding of what is known on the drug and you are better able to understand and predict how it may be used best both now and in the future.

As a father, I have always understood MIBG therapy to be a type of targeted radiation. I knew it worked in some kiddos and not others. Finally, I knew that it was available in one trial or another. What I never necessarily understood clearly was why it was available in the combinations it was? What was the big picture? It is one thing to see this from the perspective of a parent of a child who was looking for a therapeutic option and quite another from the perspective of a researcher that was trying to maximize its usefulness and maybe even cure the disease. You may laugh. "MIBG therapy curing neuroblastoma?" Come on! Yes, you heard me say it. In fact, there are examples of MIBG creating complete remissions in adult cancers - adult cancers which may not be as hard to defeat as neuroblastoma.

I am not saying that MIBG is a cure for neuroblastoma today. However, the potential of therapies like this to create that type of effect are very real. Not only could I see MIBG therapy as an important component of many children's treatment regimens but I can also see it as the treatment that makes the difference between life and death for some.

That is a pretty strong statement, isn't it?

The point is not that MIBG therapy is the answer. Rather, the point is that the science is improving and even at this point in the game we are already seeing some remarkable successes. It is a subject that is part of my third unwritten rule to neuroblastoma treatment but I can tell you that there is very definitely a group of patients who should have this therapy on their radar. If you have MIBG avid disease and it is refractory or relapsed, if it is solid tumor or bony disease, it should be something that you are talking about. It should be a consideration. It may be inappropriate for your child, the timing may not be right but it is another weapon in your arsenal that should be considered with your oncologist (or preferably an expert) if you fall into this category.

It is the science of purpose.

Monday, March 9, 2009

A unique trip to the NANT

It is good to be home. I always miss my family tremendously when I travel. What can I say, I am a rather sappy advocate. However, I must be honest and say I wish this one could have continued on for a few more days. I had so much going on peripherally at this meeting that I missed several of the presentations that have traditionally been some of my favorites. Not to worry though, for the most part I had seen them and heard them all before. Additionally, the activities I was engaged in were far more important in my eyes. This was my fourth trip to the NANT and although structured as all of the others was quite possibly the strangest and most intriguiing of all of them.

Going into this meeting, one of my goals was to get a firm understanding on the support for a drug combination including ABT-751 and Fenretinide. I know that to many this would sound very simple. Here we have a very interesting (remarkeable) combination of drugs. Individually they have activity in children. Together the preclinical research predicts there to be substantially more. In fact, this additive effect has even been duplicated with other drugs that share this same mechanism of action. You weigh this exciting data against the fact that the protocol has been written and ready in the NANT for about 2 years and you would think this would be in kids today. What is the problem? Ultimately the problem has been that the pharmaceutical company would not provide the drug. This is further compounded by the fact that the preclinical work has been well received by well respected peer review groups. It was even awarded as one of the poster presentations at both the ANR and ASCO conventions, 2 of the top respected research conventions in the cancer world. Both the combination and the drugs individually have also received kudos by the NCI as being great examples of translation. If all of this was not enough I will tell you from my "laymen, father of a child with cancer who is nosey, neuroblastoma researching, purpose-devoted" perspective that there are several characteristics of this preclinical research that are so promising that I have never seen them before in any research that I have read. So, given all of these points, I still wonder what exactly is holding up the drug. It isn't the quality of research. There is something else at play here.

Before I get into this I don't want to be an alarmist. This combination is not the cure for cancer. I do believe it is promising. I do believe that it will work well for some kids. I think it is important and I believe it should be in kids right now. But, let's just keep it in perspective.

So, now, let me tell you what I know. I can tell you that there is general support from the medical community. In fact, I talked to many researchers in private one-on-one conversations on this topic. Furthermore, I can also tell you that I did not talk to one single investigator that was not in support of the promise of this combination or in moving it forward.

In fact, there is so much support for this particular combination that it will be discussed in the next scientific review committee meeting within the NANT to identify what the next best move is. I will be honest and say that I went in with the intention of coming out with a signed letter of support. However, in light of several new happenings, it is clear that discussion needs to take place before the combination is moved forward. These are recent findings that need to be carefully weighed and considered before it is decided whether this combination will move forward as it is currently planned or if some changes will need to be made. I can also tell you that these are not the issues that have held up the trial previously. These are simply new and emergent issues that need to be addressed and one of the reasons that made this particular meeting so unique.

So, to make a long story short, it will take a bit longer to get to the bottom of this issue. But, coming from somebody that wants to see this move forward as quickly as anyone else, I can also tell you that this is a necessary step.

Wow, I finally made it through that and that was just one of many of these types of issues. I will spare you the other for the time being. I guess the only thing that I should probably address right away is the rest of the meeting. People often wonder what we hear in these close door meetings. Do we know how patients respond? Do we know what works?

In short, no and no. And frankly, even if we did, we sign confidentially agreements which preclude us from discussing much of the meeting. With that being said there are things that can't be "legislated." This is what I think is the most important point. It is from this perspective that I can tell you that I am completely impressed with the work of the NANT and the decisions that are made. The trials currently available in the NANT and the ones that are likely to come give me significant hope and appreciation for all of the investigators and researchers that work so hard on our behalf. I am routinely blown away by their thoughtful consideration of our children and their commitment to move forward in a thoughtful and meaningful way. I can tell you from my perspective that every single one of their trials is not only meaningful from a scientific perspective but also for our children that need options now. They face difficult challenges and extremely hard decisions.

Yet, they always remain extremely committed to our children. In fact, it is that commitment that is the reason that the five parents of children with neuroblastoma participate in these meetings. They want to be informed of our needs and concerns and they want to move research forward that is meaningful to us.

Finally, what makes this group such an important group for our children is their commitment to get the prioritization right. You have heard me harp on that subject to the point of exhaustion but it truly is the key and the NANT has it right.

There will be more to come throughout the weeks.

I have never felt purpose so strong.

Wednesday, March 4, 2009

Off to the NANT

Good morning! Well, it is official. I know have a full house streptococcal twerps and one streptococcal wife. In fact, I am the only one that has not received an official diagnosis. Of course, I am also the only one that has not visited the doctor. Not to worry, I found a left over bottle of Augmentin from one of our dogs past infections. So, I am good to go, and well on my way to recovery. Although, I do have a strange compulsion to howl at the moon. You may laugh but, hey, it is the same antibiotic and dosing that Lynley is receiving.

Tomorrow I am off to Los Angeles for the NANT meeting. I have spent a considerable amount of time thinking about what I will say in my presentation. I have decided to concentrate on 3 areas and I will be pushing for change. I should probably also mention that we (several other parents of children with neuroblastoma) will be meeting with a few of the investigators beforehand to discuss these topics. Our goal is not to dictate change but rather to learn all sides of these issues. Often, what may benefit a single child or single group of children may, in fact, hurt research or the speed at which it may be accomplished. So, what we try to do is gain a thorough understanding of the issues involved so that we may pose suggestions or propose solutions that can benefit all involved.

The first topic I intend to cover is "informed consent." One of the things that the NANT does is blind response data. In other words, no one knows whether prior patients have responded to a clinical trial. Ironically, they do provide toxicity data. So, they tell us what toxicities other children on the trial have experienced. Frankly, they have to do that. However, my argument is that response data should be no different. If they are planning on us (or our children) to assume risks both known and unknown then we must, therefore, also have a concept of the potential benefits. With out that information we cannot provide informed consent. Secondly, due to the fact that we have no way to gauge our prospects of direct benefit this puts human rights protections into play which slows down trials, increases subtherpeutic dosing, and, likely, reduces the chances for children to have a response. At least, these are some of the arguments I intend to make. Over the years, this is one of the only improvements that the NANT has been unwilling to budge on. Frankly, from a scientific point of view and from a data integrity point of view I can understand their reluctance. However, there are other well respected institutions and consortia that provide this data so there must be an answer or a compromise to be made somewhere. I just have to figure out what that is. I know what we want. I just have to figure out how to get it.

The second topic I will be discussing is the issue of human rights protections. The irony is that we are advocating for the opposite of what advocates normally advocate for. We are advocating for greater risks for our relapsed and refractory populations. Yes, you heard me. We are arguiing against the age old medical adage "first do no harm." In fact, I think that if you polled the NANT investigators off the record, some might agree on the need to measure risk relative to the risk of dying from relapse. The irony is, believe it or not, the NANT does not have much control over this. There are federally mandated bioethical rules which dictate the level of risk that an IRB (Institutional Review Board) is allowed to let through. Believe it or not, for the most part, the government dictates that we are prohibited from exposing kids to anything that represents anything more than a "minor increase above minimal risk" AND that the standard for risk is measured against HEALTHY children. This is a ridiculous concept considering the fact that many, if not most kids, are eventually faced with the choice of death or a phase 1 trial. Their risk should be measured against the risk of death not that of a healthy child. Worries about potential side effects are real and we appreciate the concerns but when parents weigh the known effects of untreated NB (death) vs. the unknown side effects of a novel treatment I believe most parents of relapsed/refractory and especially progressive patients would gladly take the novel treatment. These changes in perception could potentially reduce the number of kids who receive subtherapeutic dosing in phase 1 trials, increase trial availability, and hopefully, speed the process of getting beneficial therapies into kids.

Now, I should point out that I am not advocating willy nilly changes in the rules for all kids with neuroblastoma. I am looking for a compromise which takes into consideration the reality of what relapsed and refractory children face. Finally, I want to remind everyone that the NANT is not our problem here. They are on our side. Perhaps together we can create some minor changes that will create substantial change for our kids.

Finally, many parents are clamoring for customized (or personalized) medicine and have asked that I advocate on their behalf. I have to be honest and say that while I think this has potential to be of value in the future, I don't believe it can be put into practice now. Although we have the technology to identify genetic tumor characteristics at will, we still have no idea (or proof) of how we can attack those mechanisms in reality. I think it is an important direction for the future. It is something that we should be considering, tracking, watching, and researching but, it just isn't ready for practice. Frankly, with the exception of one child (who passed due to toxicity of the customized medicine), I am yet to see it work for a single patient in a meaningful and measurable way. I know, I know, I am going against the grain of the childhood cancer conspiracy theorists. I know there are parents that are very passionate about this subject and believe it could help. It looks like it could. It just doesn't - yet - and the cost is significant. I can tell you already that the NANT collects much of this data. I can also tell you that they are hindered by a lack of financial resources to do this at the level that we would all like to see. None the less, I think this is an important discussion and one that I will be putting forth to identify ways that we can potentially move forward more quickly with this idea in a way that is meaningful for kids.

So, probably much more than you probably wanted to hear, but that is the direction that I am going. We discussed many topics that were suggested by other families and we found that these were the most important to get across in our limited time. I am always open to suggestions though.

Well, I had best be off. There is much purpose to accomplish and I have 2 sick kiddos at home again today.

Tuesday, March 3, 2009

Spreading Sickie-ness

It appears the sickie-ness is spreading. Graham is now complaining of a sore throat and stuffiness. This morning I will be taking a gaggle of twerps (count of 2) to the doctor for a throat swab. While I am not hoping for strep, I am certainly hoping to find something that will bring them some relief. I am expecting a swab for both strep and flu. I definitely don't want to hear the latter. The good news is that although there is soreness, they both seem to be weathering the storm fairly well given the symptoms.

As a side note, Sydney successfully survived her dental appointment yesterday. She now has a lovely new silver crown on the tooth behind her left canine. She is extremely proud. Again, this crown is on a baby tooth and we expect her to lose it in a year or two. The dentist was amazed at her calmness with the whole procedure. We weren't. Wow, how your perspective changes after all that she has been through. I sometimes forget what an incredible trooper she is. She makes me proud every time. Too bad, she is such a twerp the rest of the time. ;)

Well I had best be off. There is a mountain of work to do in an already shortened workday.

Purpii and Purpose abound.

Monday, March 2, 2009

Chemotherapy or neglect?

Good morning! Well I'm happy to report that the Dungan five survived the weekend. Surprisingly, even with cool weather, the kiddos demanded to spend the majority of their weekend out in the back yard on the trampoline. I guess that could be a reason that Sydney is not feeling so well today. Wow, I am just putting 2 and 2 together. It started yesterday afternoon with a sore throat. I really did not think much of it as I had the same symptoms earlier in the week. In fact, I was really not feeling well at all. Thankfully it was not something too severe and I was able to keep up with my normal work schedule. However, with Sydney showing signs, I imagine that we may have a few sick days in our future. We will just have to see what transpires.

Her sickness could also complicate the fact that she has a dental appointment today for a crown. Ironically, the crown will be on a tooth that is right next to one that could fall out at any moment. I imagine that by the end of the day it is likely that she will have one less tooth and another that has changed from white to silver. The crown will be placed on one of her baby teeth. We are already beginning to see some dental problems. I am curious as to whether this is normal or whether the health of her teeth has been compromised by all of the treatment. Sydney is not the best tooth brusher but I would still not expect this level of deterioration at this point in her life even given her lackadaisical brushing.

I can tell you that the spot on this tooth is on an area that can not be reached with a toothbrush. It is due to the shape of her tooth. This being a baby tooth I don't know what its stage of development was at 2 years of age and, furthermore, I don't know what impact the chemotherapy may or may not have had. I just know that it has some. Believe it or not, this is just an area that I have not spent any time researching. I guess I probably deserve a slap on the hand. What does that say about me. I have always concerned myself much more with beating the disease away than worrying about long term effects. Thank goodness Lynley is around to protect our quality of life.

I guess sometimes I cant see my purpii for my purpose.