Not good...but not bad

The most recent MRI report states that there is a 1 mm increase in the tumor. Even Dr. Goldman says that it looks the same and that 1 mm could simply be a discrepancy in measuring. We do know, though, that there is no significant growth. Dr. Goldman thinks it's time to change treatment. He knows that we have tried to avoid radiation, if possible, and he is offering an antiangiogenesis type chemotherapy, lenolidamide. I asked what results he has seen with it. Although it was only through (or maybe still in) phase I (which only determines appropriate dose), he said that out of 39 children in the trial, 8 showed either shrinkage or stabilization of the tumor. Just to note, it is most often the goal of a chemo regimen to simply keep the tumor stable. So, when this happens - it is considered a great success. Although I would certainly rather have James' tumor remain stable than grow, I just don't feel that the overall goal should be to simply stabilize the tumor.

Without a whole lot of research, consideration, and prayer yet - I believe that our first action, IF the antineoplastons is considered to be not working any longer, would be to talk with Dr. Burzynski and see if he had any options with targeted gene therapy. This is what he is using right now for Pastor Smith's son, Andrew (www.caringbridge.org/visit/aws). This is also what Dr. Burzynski was talking to me about when we visited Houston last. He is very excited about this new treatment. He would love to add it to the antineoplaston therapy - he says it would accelerate the treatment. But, most patients on antineoplastons are locked into clinical trials and are not allowed to add any other treatments. IF that were not an option, I would at least consult with Dr. Wisoff in New York. He is the one and only (for the most part) neurosurgeon in the nation that will consider removing optic gliomas (which are considered inoperable) - and, by what I have seen, has done a good job. That decision would certainly take much prayer and consideration, for it wouldn't be without its problems. But, at least it would be accomplishing much more than just stabilizing the tumor and allowing it to steal the rest of James' vision.

For now, no decisions will be made. James is healthy and well and it seems as if the growth has stopped. So, barring any change that Dr. Burzynski might have, we will continue on and see what the next MRI shows. They have continued to increase James' dose and he is tolerating it well. He is now on 17.5 cc of A10 and 1.9 cc of AS2-1 96 times a day (every 15 minutes). This is the highest dose that he has ever been on, so we are quite happy that he is doing so well on it.

In the meantime, I'd like to look more into any supplements or diet changes that might help in James' treatment - especially since a diet change is what Johannah needs most. Of course, it certainly couldn't hurt the rest of us, either.

We do so appreciate all your prayers.