Tuesday, May 25, 2010

April 25

Clay had another very good week last week, and his blood counts were even stronger this past Friday. We anxiously upped the dose to 100%, but did not see any increase in side effects or headaches.  We are praying that his next MRI on June 1 will show shrinkage.

In anticipation of perhaps needing a plan B (or is it C at this point?), JD and I flew out to Houston, TX on Sunday to consult with Dr. Burzynski of the Burzynski Clinic. You can read about his approach here www.burzynskiclinic.com if you are interested in the specifics, but in-short, he has formulated a proprietary approach to targeting cancer cells with antineoplastons.  The drugs are currently offered only in Phase 2 clinical trials, and are not yet FDA approved.  Some patients have had total cures using his method, particularly for brain tumors.  So after two cab rides, two airplanes, and one night in nearby hotel, we met with "Dr. B" and some of his colleagues.  We had hoped to get more clarity on the efficacy of the protocol during these meetings, but exact data was not forthcoming. This, in addition to some controversy surrounding his approach, left us feeling frustrated with the meetings.  The protocol itself would not be an easy one for Clay.  The infusion is continuously administered, which would require Clay to wear a backpack to hold the drugs (for 1 year at least). We would need to be in Houston for several weeks while we all learn the routine; thereafter we would administer much of the treatment from home, with regular monitoring.  If the clinical trials end up with FDA approval we would move forward; at this point it feels much more like we would be taking a leap off a cliff.  Our greatest hope is that we will not have to make this decision now.

Now that Clay is in school he is being exposed to all sorts of new things.  He told me he has made a friend, "a girl in a yellow shirt who loves me."  The next update I get is the day of the fire drill -- where she tried to kiss him. "They told her no kissing in school, Mom!" Then today, he reported "she wore a green shirt today, not yellow, and she hugged me...but they told her no hugging in school EITHER!" Oh boy.


  1. Pearl is adorable! Tell Clay to stay away from those girls! No doubt, she took one look at his big, beautiful eyes and fell hard.