Monday, March 3, 2008

5:34 AM 3/3/2008

5:34 AM 3/3/2008

Good morning! It feels like it has been weeks since I last wrote in the diary. A tremendous amount certainly has transpired in the short time since I last scribbled my thoughts. I will have to cover much of this over a period of several days. First, I should tell you that my trip to the NANT was wonderful. As always, it was jam packed with information and research. I also had the opportunity to meet with many of the investigators first hand. I was extremely pleased with what I heard but I will go into more detail as the days go on. Although I tried to avoid the conversation during the consortium meeting, there was also much that transpired regarding Sydney. Quite frankly, I did not really think this was a proper venue to discuss her treatment. None the less, I was pulled aside on several occasions to discuss her care. I genuinely appreciated their compassion and interest.

In the time that transpired since last Thursday we have continued to hear good news (if not more confounding news) regarding Sydney. At this point most of the tests have been run and Sydney has continued to be negative at everyplace her marrows have been tested. This is great news. It is not proof that she has not relapsed but a very good indication that we are not currently dealing with widespread disease. I received several reports throughout my time at the NANT of her marrows continuing to be negative. There are two labs that are doing some specialized testing that is beyond the scope of what I have previously mentioned. I do not expect them to necessarily find anything and I honestly don't know if anyone would consider acting on those results if they came back positive anyway. In these cases we are operating on the very edge of science and we honestly do not necessarily know what the results would mean anyway. However, another negative result would be just that much more assurance that we are not dealing with disease.

So, what does all of this negativity mean in the big scope of things? While I am tremendously excited about it from the standpoint of continued evidence that it might not be neuroblastoma, the fact is that there is still something in her arm. This isn't fluke. This isn't some natural process that just got picked up. There is something growing in her arm. People are asking questions about a benign tumor or a secondary cancer. While the outcome is unknown we are still very much dealing with something and it could be better, as bad, or worse than what we have suspected. It is for this reason that everyone is now suggesting that we go in and biopsy the spot. Lynley and I always realized that this was a possibility but we wanted to spare Sydney some of the risks if possible. Since we have tried everything else and not found any answers it is now time to take this step. No one is favoring hanging around to see what this turns into, if we can avoid it.

The current plan on the biopsying of the spot has changed. Originally we had discussed an open (surgical) biopsy or resection. However, Dr. Heidi Russell has put forth another idea which seems far less invasive. Texas Children's has a great interventional radiologist who feels confident that he can get in and get some worthwhile samples. I am not sure of the radiology involved but they will be using an MRI or CT to guide the biopsy. In this way they will be more sure that they are biopsying the correct spots. From what I understand they are planning on taking 3 samples. Currently this procedure is planned for Wednesday morning in Houston but that may change if Lynley has anything to do with it. Bottom-line, we believe it will happen either this week or the next and I probably will not know for sure until later tonight. To throw another wrench into all of this, I am going to be in Houston tomorrow morning anyway for a check presentation. We have a group of families that have done a tremendous job of raising money for neuroblastoma research in the area and we are going to be making the official presentation of the check that made a new and exciting clinical trial possible. If we plan on doing the biopsy on Wednesday Sydney and Lyn can just plan on coming down tomorrow and we can make a mini one day vacation of it. Regardless, no one will probably know until we have already committed and I will be leaving at sometime near 4:00 AM. Updates to the diary will be sporadic.

See! I told you there has been a lot going on. It has been a roller coaster during the last few days. We are, however, moving closer to answers. Most importantly my family remains happy. We will get there. Thank you for your continued prayers.

With hope and purpose,


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