7/17: First Day at the Burzynski Clinic

We went to sleep a little late last night and Leo woke-up "on time" this morning, at about 6am, playful and happy. We managed to keep him quiet for a little while, but that ended much sooner than we would have liked. Dr. Szymkowski called asking us to come sooner, so Leo picked-out a nice, new button-down shirt, new socks, and pants. He prefers to wear pants lately, instead of shorts, and there was no convincing him that it was going to be insanely hot today. Regardless, he looked as cute as ever.

We got to the clinic without any issues and everyone knew who we were before introductions! The reception area -- and every other wall -- was covered with pictures and stories of survivors. There were pictures of children with Presidents Bush (Senior) and Clinton; before-and-after diagnoses, and various collages. After countless forms, we were taken to a large conference room and met with Dr. Szymkowski. She explained various aspects of treatment, including an overview of the regimen: 22 hours of infusions per day (4 hours per cycle) via a 2-channel pump. Leo will be getting 2 antineoplastons: AS10 and AS2-1. We aren't quite sure of the di\fference yet, although she did explain, and will post here when we "get it." She said she couldn't quote an exact prognosis and that Dr. Burzynski, himself, would talk to us shortly. The few things I do remember her quoting were general side-effects and their statistics. Dangerously high sodium levels were present in about 5% of the patients. Dangerously low potassium levels were less frequent. White blood cell counts dropping were even lower than the potassium levels, so we're talking 1-2% or something like that. The other side effects were the similar to everything: nausea, vomiting, etc. The good thing is that all these seem to be manageable.

She also told us that Saturday's MRI did not provide the good news we originally thought. Although the overall size of the tumor has not increased, there was more "enhancement" than before. This seems to mean that there is more aggressive tumor activity than before, as shown by its metabolism of gadolinium (the stuff enabling enhancement) during the MRI. Obviously this was very upsetting, but the bright side is that more aggressive tumors are supposedly easier to treat than less aggressive ones. Continuing, she said FDA approval was no longer required because of the disease progression, more "good" news. Internal Review Board approval was still needed, though, and is expected by close of business tomorrow. The most important question was whether there was an issue of "if." She said there were no "ifs." Treatment would begin; it was now just the matter of Wednesday morning or Wednesday afternoon.

Then we met the man himself: Dr. Burzynski. He looked exactly like the photos we'd seen and said something to the effect of our coming here was for "hope," which is something the oncologists, radiation oncologists, neurosurgeons, and other medical staff at home and other places can't provide. He exuded confidence, but not arrogance. He gave us a glossy brochure of a couple of recent studies that showed statistics about antineoplaston treatment in children under 4 with instrinsic brain stem tumors that were presented at a neuro-oncological conference:

• Complete response (no disease): 30%
• Stable disease: 40%
• Progressive disease: 30%

Those numbers are incredible: instead of about 2-5% chance of Leo surviving, their statistics show something like 70% survival! We understand that there are no guarantees, but we'll take odds like this anytime over the traditional ones!!! Antineoplastons are gene-based therapy, meaning their belief is that there are certain malfunctioning genes that make people susceptible to cancers. Unfortunately there is no genetic test at this point to validate that, but someone's working on it. The fear is for Anna and Nina, as well as Leo's children. For now there's no sense in worrying about anything except Leo getting better soon. Also, their longest-term survivor has been cancer-free for over 20 years.

After lunch we discussed finances and Leo got a physical, although again they couldn't draw blood from his venus port! We met Dr. Weaver who did a basic neurological exam and is one of the main people at the clinic it seems. All we have is a blood test tomorrow, so we're going to try to find something fun to do the rest of the day in this oven.

I was right in the morning; the car was intolerably hot when we got in and I almost burned my hands on Leo's carseat buckles and the steering wheel. The inside really cooled-off a few minutes before we reached our hotel and Leo was exhausted by then, but still had enough energy to throw a full pack of pull-ups all over the floor. We laughed and he punched me and had fun until he got quiet and just passed-out. It wasn't a long day today and we realize those are still to come...