Tuesday, April 21, 2009


You know, it is always the biopsy part of scan week that scares me the most. Believe it or not, that is probably one of the most likely spots to see a relapse. This is especially true with Sydney whom we really do not know whether she continues to be MIBG avid. I am going to be frank and say that I am now officially starting to worry. It was one thing when the test results were not available. Perhaps they had just not been keyed in. It is another thing when the oncologist tells you that she will give you a call with an update but you never hear from her. That is the point when the paranoia really started to set in.

It is a constant battle in the mind. I can think of 1000 reasons why she did not call yesterday. After all, there are other kids to cure. She could be busy. I mean, where should our priority really be? There are kids fighting for their lives this very minute. That certainly is more important than the needs of an overly paranoid family with a daughter who is almost 6 years out of diagnosis and who has not shown disease in almost as long. I guess the point I am making is that I am rational enough to understand that there are probably much more important things - especially if Sydney continues to be clear. The problem is that it isn't any less for me. The findings aren't any less critical to me. I don't have competition with 100 children who need care, who need their life saving experience. I just have 1 child to worry and think about. My need to know is just as desperate as it ever was. Our life feels as though it is in a holding pattern. Did we get another pass or is this where we get off?

They are scary and horrible thoughts.

So with all of this, I come back to where I always end up. I will wait. I would gladly taking the pain of waiting over the pain of relapse. I appreciate where we are.

Purposefully waiting...

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