Today is Neil’s 24th Birthday, and I imagine he is celebrating up among the stars. 20 years ago, after visiting the Kennedy Space Center at Cape Canaveral, we celebrated Neil’s birthday with an astronaut theme, unaware that 15 years later he would become a Cancer Moonshot kid… diagnosed with DIPG.
In 1962, when I was four years old, astronaut Neil Armstrong’s 3-year-old daughter, Karen “Muffy,” died of DIPG. How is it that in 1969, we could put a man on the moon (Neil Armstrong), and yet, over fifty years later we are still unable to save a child from dying of pediatric brain cancers like DIPG? Fifty years later, oncologists are still targeting tumors with radiation and without improving outcomes.
In January 2017, Vice President Joe Biden announced the Cancer Moonshot campaign to increase resources for cancer research and improve coordination across the research community. March 4, 2017, we attended Neil, 19, as he met with an oncologist to view MRI images, receive his diagnosis of DIPG and an estimate of three months life expectancy… unless he decided to undergo 30 days of radiation, in which case, he might have six months of life expectancy. We were told there was no cure. There were, however, clinical trials studying new drugs and procedures for DIPG treatment, and we were told to start doing our own research into these options.
Neil declined radiation, and we quickly set about to doing the research. At age 19, Neil was too old to qualify for many pediatric studies and too young for adult studies. We discovered an FDA-approved Phase II clinical trial opening in April. It was located in Houston, home of the Johnson Space Center. We had to dig through an inordinate amount of negative media, about the researcher and his protocol, in search of the truth. Neil skyped with a 29-year-old DIPG survivor of five years, who had used this therapy and been cured of something for which there was no known cure. Neil based his decision on information gathered from books, research results published in medical journals, documentaries, personal conversations and the following simple facts:
- The antineoplaston treatment the survivor spoke of was non-toxic, and it worked for her after all standard protocols had failed her.
- The DIPG clinical trial was the only trial that did not require prior radiation and was open to all age cohorts.
- The treatment sought to address an underlying systemic deficiency – the absence of an essential peptide in cancer patients, which is produced in the bodies of healthy people, as detected in both blood and urine.
Neil was the first patient to enroll in the new DIPG Phase II trial at the Burzynski Clinic, involving the administration of antineoplaston formulations A10 and AS2-1. The day he began his infusions, however, Dr. Burzynski received a letter from the FDA announcing suspension of the trial. We sat with Neil, as he reviewed the letter and related documents with the doctor. A highly accomplished chess player and science student, Neil quickly saw this as a false move in an ongoing high stakes chess game that the agency had been playing with this particular doctor for many years. While the U.S. government was launching its Cancer Moonshot campaign, the agency was going to control who could participate and who could not. Many barriers were placed between Neil and his dream of a pursuing a cure. He knew there was no guarantee, however, he strongly believed in his freedom to choose for himself and his Right to Try what he thought would give him the best chance for survival. As a cancer patient given three months to live, he fought hard for his life on numerous fronts, and he overcame great odds to survive for almost a year, without radiation treatment.
For over fifty years, billions of dollars have been spent searching for a cure for cancer. It is a huge money-making scheme for the industry players. My hope is that we will dedicate dollars to idetify and correct the underlying causes – peptide deficiencies, vitamin and mineral deficiencies, toxic chemicals and metals deposited in tissues (from tap water additives, herbicides and vaccines), leaky gut and gastro-intestinal biome imbalances, etc. Perhaps the answers are not up among the stars. Perhaps they are down here at Ground Zero.
May 17 is DIPG Awareness Day, and the DIPG community is working hard to make this a national resolution. Join us on the “DIPG Advocacy Group” on fb #moonshot4kids.
Happy Birthday, Neil!