Tuesday, February 19, 2008

4:26 AM 2/19/2008

Well, this morning isn't a particularly good one. Late yesterday afternoon Dr. Eames called with the further testing on the marrows from Genzyme and, sure enough, they were positive. While Dr. Granger had told us that everyone was positive I still did not want to hear the news. I quizzed Dr. Eames about this whole "everyone is positive" thing. I found out a little more. This company has had issues in the past. 18 months ago everyone was positive. They had some issue with staining and have acknowledged it. Essentially their were problems with both the antibodies and the staining procedure which illuminated cells which were not actually neuroblastoma cells. This test is an antibody/staining procedure so they do not actually see neuroblastoma cells. What they see is staining. The more staining - the more neuroblastoma, theoretically. They have had sporadic issues since. The company, of course, believes that they have improved their process and feel confident in their product. They stand behind their result. I would expect that. Unfortunately, they feel that Sydney is positive for neuroblastoma.

Another finding that was bothersome to me was the fact that she was significantly more positive on one side of her hip than on the other. While I could probably dig very deep to come up with a rationale of why this could be the case, it certainly isn't comforting. This is clearly not what we were looking for. It is bad enough that we feel that we need to get more aggressive with identifying what is going on. It looks like we will be meeting with an orthopedic surgeon on Wednesday who we already know is going to want to biopsy the spot. We will know more later but it looks as if the procedure will happen next Tuesday.

This is so reminiscent of 3 years ago. Although we have migrated to another bone and we are talking about an arm instead of a leg it is eerily similar. Talk about putting our money where are mouth is. Do you want to know if we relapsed three years ago? We are about to find out.
This is becoming more difficult by the minute. It is one thing to exist in the world where you know your child may have relapsed and have the hope that she really did not. It is quite another to be faced with the reality. I know we have to know the answer. I just don't know if I can handle the truth.

Yesterday we also took the girls to see Dr. Debbie. Ainsley has a confirmed ear infection and has been placed back on antibiotics. Surprisingly, Sydney was not. Seemingly, however, she seems to be having some pain related to her Eustachian tubes. When Dr. Debbie applied pressure she squirmed a bit. We have put her on Rescon G/G and are hoping that we can get it cleared up relatively quickly. Last night, however, she produced a fever of 100.7. I don't think I need to tell anyone how nervous that makes me. Regardless, I can feign blaming it on a sinus infection and that still gives me a bit of hope that this is unrelated to neuroblastoma.

Other than this Sydney is in excellent condition. She has had a blast running and playing and could not be happier. She is having fun with her brother and sister and even took out time to play a couple games of cards with me. By the way, I am not one of those nice Dad's that let their kids win. They have to earn it. Sydney is slowly learning to beat me. She is getting better and better everyday. That is progress.

That is purpose.

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