Thursday, June 11, 2009

What do you wish you knew about neuroblastoma?

As of late, I have been trying to identify some of the most common questions of parents of children with neuroblastoma. I am working on putting together an online video series which attempts to not only cover some of the more common questions but also addresses some of the most important decision points throughout high risk therapy. There are clearly unwritten rules that need to be considered and I am continually surprised by some of the questionable advice (if not in complete contradiction to what is known by the experts) that has been given by both the medical community and other parties. There has got to be a way to reach these families and I am hoping that a series of online videos through Google, YouTube and other social media outlets may reach these families.

Over the years, I have written about many of these issues. However, most of which is mixed within the volumes of my daily dribble. There has got to be a better way to get reliable and medically reviewed information out there for parents. The answers to these questions need to be amongst the first things people find when they search a topic on the Internet. By capturing these facts on media and coupling it with with written articles in a more appropriate setting than my diary I am hopeful that we may be able to help many other families.

So, where am I going with this?

Well, I need your help. I want you to think back, sideways, or straight ahead and help me develop a list of all of the things that you wish you would have known when you began your family's journey? What are the things you wish you knew? What would you tell another family that just stepped into the world of neuroblastoma? What would you tell someone that was getting ready for their first rounds of chemo? What would you tell them about surgery, about transplant, about radiation, about Accutane, about immunotherapy? What do they need to know about relapse? What do they need to know about clinical trials?

Please feel free to leave your suggestions as comments to this entry or to email them to I want to get as many suggestions as possible. I certainly don't know all of the answers. I don't even know all of the questions. However, I am going to take these suggestions, combine them with facts from the medical experts and then use them as the basis for this video series.

Thanks in advance.

This is important purpose!

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