Wednesday, February 20, 2008

5:16 AM 2/20/2008

Sydney had a great day yesterday. As usual she was difficult to pull out of bed in the morning but she had the first full and complete day that she has had in a while. The fever was gone. She was also extremely excited to be back at school with her friends again. I personally did not want her to go to school. I wanted to hold her, spend time with her, and never let her go. It is such a selfish feeling. I know that. In the end, I simply put a smile on my face and ushered her out the door. I then spent the next 7 hours wishing that I was with her. I often contemplated going to pick her up early from her 45 minute stint in aftercare but I also knew she liked that time as well. In the end, I would just focus my head back into work to keep myself from going nuts. At this point I am focusing on tasks that keep my mind running so I don't have time to sit and wish and pine away. The trick for Sydney is to keep things as normal as possible. Currently, she seems happy and I don't want her to feel the way that I do.

Today we will be picking her up from school and taking her to the clinic. At 2:00 PM there will be a meeting with Dr. Gillespie and Dr. Eames to discuss the biopsy of Sydney's arm. As I had mentioned earlier, I think all of our minds have been made up. None the less, this will be a good opportunity to discuss the risks of the procedure and to hopefully get a better handle on what may or may not be ahead. It is a very, very scary time.

I am still just reeling from all of these tests and scans. I can so easily see that this could be cancer. Yet, on the other hand, I can also see logical ways to hold out hope that this is not my worst nightmare. I guess the difficulty is that we now have mounting evidence before us. The bone scan in and of itself is not that bad. As I said on day one, it is a nonspecific test. It could be anything. Yes, it could be cancer, but it could also be infection, trauma or fluke. When the MRI came along it did not surprise me that there was something in the same place. Although it ruled out some kind of technical malfunction I really did expect it to confirm the result somehow. Of course, I was hoping it would confirm it with more clarity and point to infection or trauma. Not so much. Instead, it confirmed the spot, but made the diagnosis even greyer. There are things about this spot that are cancer like and there are things that are not. Again, in and of itself and in combination with the bone scan, there is nothing screaming neuroblastoma. With these findings I would have been worried but I also would have felt somewhat confident that it could be something else. The clean marrows by morphology gave me even more ammunition. Either this was a very local relapse or nothing at all. When the immunocytochemistry on the marrows came back positive this further constricted the noose around our necks. This was further evidence, unrelated to the spot on the arm that this very well could be disease. It is heartbreaking really. This was the tough stumbling block for me. The harder part about it is that this result has been called into question so many times. The fact is that we know mistakes are possible and this test and lab has a history of them. In this case we are hoping that the test is simply wrong. We are hoping that the antibodies used to identify neuroblastoma cells are actually picking up something else. While it sounds wild it actually has happened many times before. With all of the things that we have done to Sydney's marrow this is certainly a possibility. Furthermore, we have not had any tests like this since we gave her the vaccine. It is possible - not likely - but possible.

It is all of these inconsistencies that dictates that we must go in. There is a lot of mounting evidence that this could be neuroblastoma. Unfortunately there is nothing definite. It is as Dr. Eames said, we need to prove it, one way or another. In the end, these are the reasons, that we will likely be opening up her arm and surgically removing a small wedge of her bone at the point of the protrusion. We will also be going for another round of marrows on her hips. We will be hitting 4 spots with the hope of increasing the sample size and our chances of finding a single cell, a single neuroblastoma cell. It is all so surreal.

Although I have had a purpose everyday, I had forgotten what it truly feels like.

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