Thursday, March 20, 2008

5:10 AM 3/20/2008

5:10 AM 3/20/2008
Still no new news on our little neuroblastoma FISHing expedition. Frankly, I am starting to get a little nervous now. I had been under the impression that we would hear something on Monday and here it is Thursday with no new news. I finally broke down and emailed Dr. Russell yesterday afternoon to see if she had heard anything. You may think that I would have mentioned it in passing during all of my conversations with her this week, but I just did not feel comfortable with it. I genuinely try to keep my CNCF business life separate from my Sydney paranoia life. So, regardless, I hope to hear back today and, for God's sake, I pray that it is clear.
I still have not made much sense of the spot in her arm. In fact, if I had to be honest, after Dr. Russell's presentation on bone metastases I would have to believe even more strongly in the possibility of this still being neuroblastoma. I know, I know we just found that the biopsy did not show neuroblastoma. Well, my answer to that is that we knew going in that the likelihood of finding neuroblastoma was probably pretty low. We do have fairly high confidence that they hit the right area on the biopsy but there are no guarantees. I know I sound like a broken record but there is still something in her arm and nobody has given me a reasonable possible diagnosis that is not cancer or neuroblastoma, specifically. All I continue to hear is "normal kids don't get bone scans and MRIs so this could be just a normal process. We just don't know." That is all fine and dandy but when you have an orthopedic oncologist screaming that it is cancer that argument just doesn't hold much water.
By the way, for those of you that missed the seminar on Neuroblastoma Bone (and Bone Marrow) Metastases the other day, a video of the presentation can be found here:
So, in a nutshell, that is why I remain nervous. I am anxiously awaiting this last result so that we can begin again the process of developing a plan. Right now, I don't have one. We need to get the result so we can move forward and make some more decisions about how we are going to proceed. If the consensus is to wait - fine! I just need to know what to do.
Purpose and paranoia - they can make strange bedfellows.

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