Good morning! I am late getting to my diary this morning. Although I woke up at my usual 4:00 AM, I was buried in email and research. The next thing I knew it was already 7:00 AM, so, this will need to be a quick entry.
First off, Sydney's earring extraction went wonderfully. It only took about five minutes. Of course, that was after almost two hours of waiting. The procedure was completed in a typical clinic treatment room. Thankfully it only required a small incision. As with anything Dungan, we were all present for the de-earring-ing. Surprisingly Ainsley was upfront and center for most of the procedure. I am unclear as to whether she has an interest in becoming a doctor or nurse when she grows up or whether she was simply showing her masochistic side. Regardless, she seemed acutely interested and not the least bit bothered by the blood.
On a separate note, I am off to Los Angeles for the Annual New Approaches to Neuroblastoma Therapy consortium meeting. Once again, this year I will be making a presentation on behalf of the NANT Advisory Council and parents of children with neuroblastoma. Each year I am privileged with the opportunity to have our voice heard. Once again, I am ecstatic to report that they have instigated nearly every change that we have put forward. The have implemented more multi-agent trials with therapeutic backbones, the have integrated new trial designs, increased the age limit on several trials where applicable, and they have made incredible efforts to inform the research process with parent perspective, among other items. I should also note that many of our "suggestions" were already implemented well before we had even thought of them. The researchers of the NANT get "it" and they do an admirable job on behalf of our kids. In short, they have been incredibly receptive and have gone well beyond lip service by constantly evolving what they do to help benefit our kids - both now and in the future.
Well, they have done that across the board with one single exception, which I will continue to fight for tooth and nail. The subject of debate is the early release of response data. It is a complicated subject which, intellectually, I understand both sides of. However, the parent in me still thinks it is a necessity almost regardless of the cost. However,I also know that the release of this data has the potential to create some very poor treatment decisions. It is a double edged sword. Regardless, this will be another opportunity for some good debate.
I will also be focusing my presentation on the subject of education and what the NANT needs to do to get information into the hands (and heads) of parents and oncologists. Seeing things from a bit of the inside, I also see the large amount of misinformation that exists out there in the real world. I will be implementing several strategies to ensure that over the next year these items are addressed. I want to be clear. It isn't that the information is being withheld. Everybody wants the information in the hands of those that need it most. Their simply isn't a method, plan, or resources to get it out there. Thankfully the neuroblastoma researchers and oncologists have been incredibly supportive. I will be presenting a plan and strategy to get information to parents caregivers and health care professionals.
Well, I had best be off. The purpose flood awaits.