95% of the tumor was removed by surgery on July 20th, 2011, and the family pursued proton radiation therapy in Jacksonville. Under the maximum dose of radiation, however, the tumor was still growing. On September 7th, several oncologists gave them the same prognosis. Chemo and radiation were not likely to work and palliative care seemed to be the best option. 5 people, however, on the same day told them about the Burzynski Clinic. Joseph’s parents, Jon and Joy, took this as a sign that they needed to be in Houston. They relay their story to this point in a video that leads up to an appeal for $50,000 to see this treatment through.
“We felt very compelled to pursue an experimental treatment in Houston, TX at the Burzynski Clinic. Upon review and initial examination, the doctors are very optimistic that they can help him! We are more encouraged than we have been since the beginning of this journey. The cure rate in this clinical trial is exponentially higher than anything we heard on this journey so far. Treatment is initiating now; however, the treatment is not covered by insurance.”
I am honestly yet to hear of a family that has gone to Burzynski and NOT been told that there was a chance. For people at the end of their tether (though Jon and Joy seem to be graceful and serene), this may be the only positive news they have gotten since their odyssey began.
As always, the community pulls together to help raise money for Burzynski. On October 8, a large fundraiser is held for the Joseph’s family.
20 Oct 2011, a friend who Jon and Joy met at the Burzynski Clinic reports: “Jon S[.] said the MRI of his son Joseph yesterday revealed a 95% response to the antineoplaston treatment. Joseph’s been through four surgeries, proton radiation and eleven hospitals in four states for his grade four, glioblastoma brain stem tumor. On September 7th, his parents were told there was nothing more they could do for him and should go home and prepare for his passing. Days later we met them at the clinic and after only one month of treatment the doctors are already talking about remission.”
I’m not even the slightest bit surprised to hear this talking about remission. It’s standard patter at the Clinic, but in truth, we need to consider the fact that poor Joseph has about 6 weeks left at this point. This would seem to be inconsistent with this reported improvement. Of course, it’s possible that the friend is misreporting the 95% of the tumor being resected. Nonetheless, the claim merits investigation.
On October 24th, we hear that the Joseph is feeling the effects of the meds and not sleeping well. (I wonder if it is the endless trips to the bathroom necessitated by fighting sodium levels while on ANP that all the other patients have discussed.)
For reliable information about clinical trials, visit clinicaltrials.gov. Please consider donating to St. Jude Children’s Research Hospital, the children’s hospital that not only treated Joseph, but once helped a young friend of mine who is no longer with us. As always, visit the patients’ websites for the full story from their perspective.