March 2008 MRI

I just realized that although it's been almost a month since James' MRI and I have mentioned results other places, I have not updated here. I apologize.

When I looked at James' MRI myself, it looked identical to the one from January. Dr. Goldman basically said the same thing when we met with him. But, when I sent the disk to the doctors in Houston, they reported an 11% increase. That makes three MRIs in a row with increase.

Dr. Weaver recommended that we try increasing James' dose again. It can only go up a little more according to his weight, so I don't know what more difference it could make - but we are trying. He is now up ot 24/2.3 every 15 minutes.

Many people have reminded me that MRI measurements can vary drastically, which is true. It is possible that there really isn't an 11% increase. But, a couple things bother me. 1. Dr. Kahn has always been VERY careful in measuring James' tumor in the last four years, and 2. this is the biggest one, James' left eye has that "the lights are on but nobody's home" look, like it did at diagnosis. That says to me that no matter what the discrepancy in the MRI is, something is not going right inside his little head.

So, we have looked at all our options, which include:

1. Continuing on antineoplastons. This is not a terrible option, but, again, I'm not sure if it's going to help.

2. Radiation. Besides the fact that we have never liked the idea of using radiation for James because of the effects that can happen years later, I have heard that radiation is not very effective on tumors that have a lot of cystic components to them - which James' does. So, I'm not sure what good that would do either.

3. Gene therapy. This is not something we can ask Dr. Burzynski to do yet because James has not "officially" failed the antineoplaston trial. The tumor has to grow more than 50% in order to be considered failed. I don't think we want to wait until it has grown more than 50%.

4. More chemotherapy. But, if we go this route, I'm not sure what we'd use. Temodar is an option. But, I believe that all we could possibly accomplish with chemo (besides effecting his body and DNA) is stabilizing the tumor, and all the while it will be stealing his sight.

5. Lenolidamide. This is what Dr. Goldman suggested. But, again, I believe it would only stabilize the tumor.

6. Surgery. This is actually the option that we are looking at the closest. We have sent James' scans to Dr. Wisoff in New York. Dr. Wisoff is an amazing neurosurgeon who has experience in removing hypothalamic tumors. First, we have to find out if he'd be willing to do it. Then, we have to weigh the risks. This type of surgery would not be without consequences - we just have to decide if they are worth the benefit.

PLEASE PRAY THAT WE WILL HAVE WISDOM IN MAKING THIS DECISION AND THAT JAMES WILL NOT LOSE MORE SIGHT.