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.

Praises!!

The biggest one....Johannah has gone a week without a grand mal seizure and about five days without ANY seizures. She made it to school EVERY DAY this week. I am very excited. We have tried to be faithful at making sure she does not have sugar or caffeine and at least a lower amount of carbohydrates than usual. She still needs to come down more on the carbohydrates, but "the ball is rolling!" I had checked out several books from the library on epilepsy and have been doing all the research I can. They have a lot of good recommendations. So far, we have added vitamin E and a vitamin B complex to her daily regimen. I still have yet to get a good multivitamin for her that doesn't contain sugar. I also started giving her 3 Frisium at night instead of 2. I don't know what is helping - I just know that she's doing better. PRAISE THE LORD!!

James had a drop in potassium this week - but nothing that a little extra Juice Plus didn't take care of.

Mary Jo Seigel, a former patient of Dr. Burzynski treated for non-Hodgkin's lymphoma, called us this last week to tell us that her son, Marc, is running in a triathlon in California in May and wants to use it to raise funds for James' treatment. Thank you Lord....and thank you Marc. Here is the triathlon: http://www.tricalifornia.com/index.cfm/Wildflower2008-main.htm My sister will be opening an account under their church to serve as a fund for James. This is such an answer to prayer!!! I have to make a flier for Marc to use, so I will post it when I'm done.

THANKS FOR ALL YOUR PRAYERS!!