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.
Friday, May 14, 2010
Last Thursday Clay was feeling pretty good, after another rough weekend. At his appointment that day they discovered his white blood cells had decreased significantly (due to the chemo), so they cut his dose to 80%. Since we've been in this difficult period of headaches, potential hydrochephalus, and changing protocols, they did not want to skip the dose entirely. Well, we had a GREAT week this past week. Unfortunely Clay couldn't go to school (too high a risk of infection with such low blood counts), but he felt great all week. What a relief! JD just returned from the clinic today, and Clay's blood counts are back to a healthy level, so we are trying a 90% dose and hoping things go as well this week as they did last week. We know so many people are praying for Clay, and we have to believe that all the prayers and all the love that surrounds Clay are helping to make this tumor shrink.
Friday, May 7, 2010
Grace and I picked Pearl up at the airport last week, at United's Cargo terminal. Grace asked me, "Mom why are we here with all these truck drivers?" Picture Grace holding the empty pink collar and leash she had selected for Pearl (see photo).
From snowy Colorado to 90 degrees in Arlington, Pearl has adjusted quickly to life in the Derderian household. The breeder asked me "do you want a male or female?" I told her I did not care at all, but I wanted the one with the 'mellowest positive energy' (Thank you Cesar of "Dog Whisperer fame for that advice). We we may actually have gotten what we ordered as she seems to be a fairly reasonable, calm terrier...almost unheard of! JD seems to be the most smitten, which is fortunate because once again he has the early shift (which includes, of course, Clay).