Moonshot4Kids

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:

  1. The antineoplaston treatment the survivor spoke of was non-toxic, and it worked for her after all standard protocols had failed her.
  2. The DIPG clinical trial was the only trial that did not require prior radiation and was open to all age cohorts.
  3. 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!

What Color are Your Emotions?

This week we launched our pilot literacy program, The Reading Makes a DifferenceTM Empowerment Project, in which elementary students will be participating in a three-week read-a-thon to earn Jester books and Jester dolls to be sent from our program partner, The Jester & Pharley Phund, to pediatric cancer patients at Hasbro Children’s Hospital.

Today Gail and I read The Color Monster with the kids and talked about the colors of our emotions. We also studied the colors of the borders in The Jester Has Lost His Jingle.and how the colors relate to the mood of the story characters. Then we asked the kids to create emoji pages to express their feelings. A trio of boys drew these pictures…

One of the girls framed her Joyfull emoji with a rainbow-colored border…

Would you like to see some more?

Thank you to the Pawtucket Credit Union for granting us the funding to make this pilot program possible. Stayed tuned for more fun!

Also this month, I’m debuting a new show on internet radio, as the host of the Story Walking Radio Hour. Mark your calendar tune in next Monday at 9am or 9pm on dreamvisions7radio.com. I’ll be interviewing Gail and talking about the Jester, the Reading Makes A DifferenceTM Empowerment Project and other exciting projects.

The Unspoken Secrets of Trash

Trash and litter will tell us a lot, if we take time to consider their presence. Yesterday, on returning from a walk around the block, I found four pieces of trash at the edge of our lawn. Curiously, all four pieces were white – a piece of paper towel, a thin sheet of plastic packaging foam, a plastic snack pack with a picture of a goofy snowman and a dryer sheet. White trash!

The term “white trash” is a derogatory term that refers to the wretched and landless poor white people who have existed from the time of the earliest British colonial settlement to today’s hillbillies. This white trash in our yard, however, was something different.

I have been teaching third grade students about single-use plastic, which is plastic unfit for the recycle bin that ends up in a landfill. Single-use plastics include styrofoam packaging materials, potato chip bags, plastic netting (used to bag ham, fruits and vegetables), snack packaging, candy wrappers and the list goes on. When people start to notice all the single-use plastic being tossed into the waste basket, it can be surprising just how much there is.

I got to wondering about the dryer sheet? How bad could a dryer sheet be to the environment. I looked for an ingredients list on the Bounce box sitting above our clothes dryer. No ingredients were listed, so I did some online research. The ingredients were missing from the manufacturer’s website. Then I found myself on Dr. Axe’s website where I read, “the current United States Consumer Product Safety Commission does not require dryer sheet manufacturers to list actual ingredients, including the chemicals used in fragrance blends.”

Further down the web page I read, ” In one of the most interesting studies to date, pioneering fragrance researchers Anne Steinemann, PhD, a professor of civil and environmental engineering, looked at the chemicals spewing out of dryer vents… Seven hazardous air pollutants and 25 volatile organic compounds (VOCs). Some of these, including acetaldehyde and benzene, are not safe at any level. (These are also pollutants that commonly spew out of vehicle tailpipes.)”

Steinemann comments, “These products can affect not only personal health, but also public and environmental health. The chemicals can go into the air, down the drain and into water bodies.” Time to stop wasting good money buying dryer sheets. They’re trash.

Yes, trash and litter will tell us a lot, if we take time to consider their presence.

Read my recent article about Clean Ocean Access and how the organization is working on getting plastic waste off our beaches and out of our waterways.

New Revelations

Wednesday, October 26, 2011 – Revelations 3:23? I bought a copy of the Steve Jobs biography and turned to page 323. There was nothing of interest there. Then I turned to Chapter 3 and counted 23 paragraphs in, where I found an intriguing story. It told of Job’s strange relationship with the manipulative spiritual leader Robert Friedland. Apparently, Friedland ran a commune called All One Farm. It was an experiment in socialism. Socialism is a system of ownership where all the members of the community share in the work and the final product.

Jobs would spend weekends at the farm, seeking enlightenment and pruning the Gravenstein apple trees. According to the book, “’Steve ran the apple orchard,’ said Friedland. ‘We were in the organic cider business. Steve’s job was to lead a crew of freaks to prune the orchard and whip it back into shape.’”

The commune was supposed to be a refuge from materialism. Materialism is the belief that comfort, pleasure, and wealth were of highest importance. Friedland’s cult followers were told to chop and sell firewood, and to make apple presses and wood stoves, for which they were not paid. Jobs and the other workers soon became disenchanted; they missed their comforts and having independence and control over their own lives. One by one they left the apple farm.

Experiments in socialism throughout history have always failed, largely due to the leadership of self-serving men who did not respond to individual needs and did not reward the individuals adequately to succeed as a whole. Having learned valuable lessons about managing and motivating people, he was inspired to create a new model of social enterprise. His management philosophy led to the innovative culture and broad market reach that came to define Apple Computer.

The Wall Street Journal article ended with this conclusion about Jobs: “We will not soon see his like again. Let us hope that when we do, it is soon enough to help us deal with the troubles that this century, and every century, will bring.”

Apple’s advances in technology now connect individuals around the world more readily with one another. Apple ipads and iphones give their owners access the internet and its vast amounts of information, multiple messenging options, numerous social media sites and millions of products. The internet is a veritable “Tree of Knowledge,” and the beguiling serpent of temptation is the biology of addiction, arising from the overuse of such portable devices. As with alcohol, drug and gambling, such addiction this brings a lack of discernment, senseless spending and a disconnect with reality. Children and teens are especially susceptible, and research is showing that these devices interfere with healthy brain, social, emotional, spiritual and physical development.

Living in an overly busy, noisy world of information-overload, how can people possibly listen to their own intuition, recognize the wisdom of others and think for themselves? This will require individuals to make a conscious effort to step back from technology and seek moments of inactivity and silence, in order to be able to reflect on who they really are, reclaim their independence and regain control over their lives. There is a healthier balance to be found between people’s technological, material and spiritual lives. Furthermore, everyone holds the potential to connect with the spiritual forces waiting to provide the guidance that can empower humanity collectively. Indeed, humanity has the potential to reshape the world into one that benefits all beings. Moving through the Information Age, perhaps the next step in human evolution is awakening to such a reality.

One common theme among my Storywalker stories for children and parents is the idea of slowing down and finding time to rest in silence, so as to be able to hear both the inner and outer voices of Spirit and to reflect on what is heard.

Secular Prophecy

Wednesday, October 26, 2011 – Today our family received a rather strange anonymous note card in our mail box. The envelope was postmarked Providence RI. The sender had tucked a small slip of paper inside, which read: “I feel GOD has called me to make a card each day and send it to someone. I pray for names, then look them up on the computer. I hope you will read the scriptures and hear what GOD is saying to you. I hope to meet you someday in HEAVEN.”

An original ink drawing of pumpkins had been affixed to the face of the note card. The card also referred to three bible references, by book and number. I looked one of them, Revelations 3:23, and was surprised to find that it did not exist. The third chapter of the book of Revelation in my bible has 22 verses, and the title of the book is not spelled with an ‘s’ at the end.

Following my intuition, I did an online search for ‘Revelations’ and found the top listing led to an article titled The new Steve Jobs biography: 7 revelations. Posted just five days ago, on October 21, by The Week, the article shared seven revelations leaked by the press prior to the biography’s public release through booksellers, scheduled for October 24. The biography is about a college drop-out who became the famous genius creator of Apple Computer.

This was one among the recent string of articles written about Steve Jobs in the wake of his passing, at age 56 on October 5. Two weeks earlier, the headline SECULAR PROPHET had jumped out at me from a cover page of the Wall Street Journal. The headline struck me as oxymoronic. Secular means non-religious, and prophet refers to someone who proclaims the will of God… or so I thought. Below the headline, I read the words “Steve Jobs turned Eve’s apple, the symbol of fallen humankind, into a religious icon for true believers in technology. But can salvation be downloaded?”

Passing through the lobby at Migis Lodge at the time I saw the Journal article, I went to search the Migis library for a dictionary. I found a two-volume set published by Appleton Century, looked up the word “secular,” and read the first definition, which was derived from the word’s Latin root – occurring or celebrated once in an age, century or long period. Century? Appleton Century?

When multiple literal coincidences such as this occur, I wonder if some librarian angel was whispering into the subconscious mind of a journalist, perhaps some word that would catch my attention, prompt my curiosity and just happen to coincide with the most immediately available reference book. Like the word “dim” and Webster’s dictionary, this was part of the same spiritual secret code deciphering game.

Next I read the definition of secularisma system which rejects all forms of religious faith and worship, and accepts only the facts and influences derived from the present life; also the view that public education and other matters of civil policy should be conducted without the introduction of a religious element.

After that, I read the definition of secularizemake unspiritual.

In this mysterious game of word play, as I accept the observational facts and influences at any present moment, I am able to creatively connect those to the existence of spirit, by pointing out unusual coincidences and hinting at a certain degree of preplanned destiny. Jobs most certainly belonged to and defined an age – known as the Information Age, the Digital Age or the New Media Age – characterized by the rapid shift from an industrial economy to an economy based on information technology. Can someone be both secular and spiritual? Apparently, Jobs converted to Zen Buddhism, which focuses on insight gained through meditation and pondering over stories, riddles and worldly issues. He dabbled in things both non-spiritual – like computers – and spiritual – like ideas. His life embodied both the physical and the metaphysical.

The Wall Street Journal article explains Jobs’s secularity in the following manner:

“This is the gospel of a secular age. It has the great virtue of being based only on what we can all perceive—it requires neither revelation nor dogma. And it promises nothing it cannot deliver—since all that is promised is the opportunity to live your own unique life, a hope that is manifestly realizable since it is offered by one who has so spectacularly succeeded by following his own “inner voice, heart and intuition.”

Was there more to the connection between the two articles, the anonymous note, Revelations 3:23 and Job’s biography? Was there a secret and perhaps more significant revelation yet to be discovered? Read more

Look Up

Thursday, October 30, 2011 – I presented my first audio project, Fiddlesticks: Nature and Nonsense, to my Business Master Mind group for peer feedback. Scripted in the format of a children’s radio hour, the CD presents three short meditative stories I had written about walking and nature. I recorded my telling of the stories in collaboration with voice coach and audio producer, Donna Mac, and local musician and performing artist, Cathy Clasper-Torch.

Parents can play the CD for their children on a car system or on a computer. They can play a story before nap time or bed time to help children wind down. They can play a story while driving somewhere special to go for a walk or before meal time to spark some table discussion.

The peer feedback from my group turned out to be unsettling. One mom said she would not purchase it, because the stories alluded to God, which was counter to her beliefs. This gave me pause.

The context in which I mention God is more spiritual than religious. Most people I know embrace a faith tradition of one kind or another as a connection to Spirit. I myself am open to different expressions of Spirit, even as I continue to examine the faith in which I was raised – Christianity. I have been most strongly influenced by a spiritual movement called Unity. As I explore divine direction in my life, I embrace the full variety of forms in which guidance may come, including chance encounters with new people and ideas or even a message that might arrive through some creative aspect or example of Nature. This guidance has led me to work with children, and the stories I record are intended to prompt thinking about Nature, as well as about individual and collective spirituality.

The other mom in the group expressed her doubts about a particular graphic inside the jacket cover that disturbed her – a photo of a cigarette package. The brand name on the sky blue package was NATURAL AMERICAN SPIRIT. Beneath the name was the graphic of a Native American smoking a peace pipe with a feather dangling off the end of the pipe. Soaring up above the name was a stylized Thunderbird eagle, symbolizing Spirit. The side panel, with the Surgeon General’s Warning, was clearly shown. I had included the packaging graphic intentionally, because it was an important element in the third and final story, Look Up, which is about Spirit. The soft tones of Cathy’s wind instrument float around my words, imitating the wistful music of a Native American flute.

On leaving the Master Mind meeting, disturbed by the critique, I settled into my car, turned on the radio and listened as a random song began to play on FM 101.5. It was “Spirit in the Sky” by Norman Greenbaum. Holy smoke! I laughed and my tension dissipated.

Upon arriving home, I got online to look up “peace pipe,” and clicked on the Wikipedia definition. The word calumet appeared on my screen. I read “Calumet is a Norman word.” Like Norman Greenbaum? I read that calumet is related to the French word chalumeau, which means reed. Calumet originally meant “sort of reeds used to make pipes.” The word calumet was used by Norman-French settlers in Canada to describe the ceremonial pipes used among The First Nations people of the region.

Across the land, each region’s people select local plants with special qualities, symbolic meaning and aroma, for use in sacred ceremonies. Using herbal tobacco or a mixture of herbs, natives smoked dried plant matter in pipes to seal an agreement or treaty or to send a prayer skyward to the attention of the Creator and other spirits. I pondered the words green balm as a homonym for Greenbaum. A balm is a pleasing smell with a soothing, healing, comforting quality.

The ceremonial calumet is still used today. The bowls of the pipe were formed from river clay and hardened in a hot fire, before adding stems made from the hollow canes formed by reeds. In my story. Look Up, I actually speak of reeds:


Look up. Read more

Agency of Angels

Sunday, October 16, 2011 – Grandpa invited me to attend vespers over at the main building of their retirement community. Vespers is a late afternoon service put on by a chaplain. A chaplain can be a minister, priest, rabbi or even a Buddhist teacher. Vesper, by no small coincidence, is the name of James Bond’s secret co-agent in the book Casino Royale.

Neil stayed back at the house with grandma, while I walked over to the main building to attend vespers with grandpa. I walked alongside him, as he drove his wheel chair. Having played football in his college years at Yale, Grandpa had been afflicted with neuropathy, a gradual deterioration of the nervous system that began with numbness in one foot. As the disease progressed, Grandpa reluctantly accepted the support of a cane, then a walker, and finally a wheel chair.

We entered the Vail Room and were handed a copy of the vespers service program. The sermon, being delivered by Reverend Andrew Rosencrans, was titled “The Art of Recognizing Angels.” On the cover was an illustration of “Peter and the Angel.” The first bible reading cited Judges 6, the story about Gideon and an angel that came to tell him he had been commissioned by God to lead the resistance. The second bible reading cited Acts 12, the story about Peter and an angel releasing him from his chains and sneaking him out of the prison.

The stories of Peter and Gideon took place during dark times. Both men were acting against oppressive regimes, and in both instances angels stepped in to help. In both stories, these angels had not been recognized as angels until they vanished from sight..

The reverend stated: “Sometimes we come to moments of crisis when an angelic intervention is urgently needed – sometimes God is with us in ways we only recognize after the fact – and perhaps one of the ways God sometimes chooses to be with us is through the agency of something we call – for lack of a better term – a guardian angel.”

My ears perked up at the mention of the word “agency.” I pictured a secret agency comprised of angels, and I imagined God sending an angel down to help Peter escape.

The reverend went on to define angels as messengers and to identify Peter himself as an angel messenger. Then he stated “sometimes we are called to be the angels that bear God’s message of good news to people in their own times of darkness and in their own moments of crisis.” He concluded his sermon by exclaiming, “Be an angel; let your message of good news be the light that helps dispel someone’s darkness; because the way God chooses to be present in someone’s moment of crisis, is through angelic messengers like us. AMEN”

The vespers service had been held in the Vail Room. Playing the homonym game, I thought about the word “veil,” which means to conceal, hide or disguise. We often talk about angels, hidden beyond a veil, yet keeping watch over us.

I thought about all this as Neil and I took Yury’s limousine service back to the airport to fly home. The driver’s name was Theo. He was a Romanian, and no relation to Leo. Theo and Leo. Golly gee. Theology? Read more