Monday, April 14, 2008

Looks can be deceiving

Good morning! We spent another great weekend together outside as a family. We had so much fun the last time eating breakfast at the botanical gardens that we all decided to go exploring again. This time I elected to take some pictures that were a little bit closer up so you could get a better sense of the twerplets. Doesn't Ainsley look sweet and innocent?

Oh, by the way, seconds after this innocent little picture she pulled all of the legs off of a lady bug. Do I have to tell you again? This is the one I will have to worry about.

Well, I am happy to announce that I read the MIBG scan correctly. Her arm is clear. As for her abdomen, well yes, it lit up like a Christmas tree. The good news is that none of it is disease. It is simply normal organ uptake. It is great news and now, well, now we wait. The waiting will be the hard part. It will be 2 and a half to 3 months before we look back again at her arm. Boy, that makes me nervous. I know there are many out there that probably think I am nuts for allowing them to wait that long. Honestly, I still have not decided how I feel about it. No, I would like to scan more often but, at what risk does that come? What do we gain by scanning more often? This is one of those decisions, like so many others in the land of neuroblastoma, which will come back to bite you if you are wrong.

If this is neuroblastoma, scanning earlier would, perhaps, allow us to catch the disease more quickly. I have always said that less disease is better than more. However, on the other hand it will take time for her arm to heal. At what point will we be able to distinguish disease from biopsy trauma. At what point will this go from being a questionable spot on the bone scan and MRI to definite disease. What will the trigger be? How will we know? In this sense, if we scan in a month what will we gain? If it is bigger, what will we really have learned? Will we be any more sure that it is disease? I don't think so. Sadly, I don't think any scanning in the short term will provide us any clear answers. In short, we will just subject her to more pokes and more hazardous chemicals.

Clearly the way purpose looks can be deceiving.

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