Absolute submersion - I am drowning in information

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

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

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

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

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

This is purpose overload.