For Our Children (Part 2): Parents Leading Civic Engagement

Over the past five years, the Story Walking Radio Hour (SWRH) has introduced podcast listeners to some amazing parents and their difference making efforts. As 50 percent of children in the U.S are now afflicted with chronic health issues, parents are taking action to reverse this trend. When parents discover their own children’s lives being threatened by environmental toxins, they become compelled to learn more and correct the situation, for the love of their children and children all across the country.

Zen Honeycutt, a podcast guest as founder of Moms Across America, advocates for healthy community food systems and promotes organic whole food, free from pesticides, herbicides and other contaminants. She has presented astonishing lab analysis of baby formula and fast food that tested positive for heavy metal contamination and continues to conduct similar studies. She has been gathering and publishing solid evidence. Honeycutt is the author of Unstoppable: Transforming Sickness and Struggle into Triumph, Empowerment and a Celebration of Community.

Rachael McIntosh, founder of the Foundation for Bioethcis in Technology, has spoken on two episode. She cares deeply about the historic shift of life on Earth caused by technological advances — specifically synthetic biology introduced into the natural world and even into humans. She is a community organizer known for her advocacy work crafting legislation for the regulation of toxic atmospheric emissions. Few people are aware of the heavy metal particulates being sprayed into the stratosphere for alleged purposes of weather and climate modification. These particulates shower down to pollute the air, water and soil. McIntosh has presented compelling lab analysis of rainwater with high levels of aluminum, barium and other toxic metals. Rachael brings attention to other advanced technologies through monthly news releases and presentations. She is the author of the fictional Security through Absurdity series of books, in which she combines her personal experiences with scientific fact into a compelling narrative that explores bioethics.

Cecelia Doucette, founder of Massachusetts for Safe Technology, is a three-time guest on SWRH. As a communications expert, educator and community organizer, Cece works at the local and state level advocating for tech safe schools, homes, businesses and for regulation of wireless technology. She provides tools, education and informational resources to help people identify, mitigate and eliminate the health effects of living within the radioactive frequencies of cell phones, cell towers, wifi, Bluetooth and smart meters. She introduced listeners to the Safe Living Technologies RF meter, which allows anyone to measure electromagnetic frequencies in any environment. Paired with the monitoring of physical symptoms, these meters can help prove evidence of harm from electromagnetic radiation (EMF) exposure. She works with legislators to craft legislation and leads citizens in advocacy.

Janet Demeter, who lost a child to DIPG brain stem cancer, is the founder of Jack’s Angels Foundation, host of Childhood Cancer Talk Radio and a lead advocate in growing awareness of pediatric cancer through her Moonshot4Kids campaign. Since losing Jack in 2012, Demeter has learned a lot about cancer research, the shortcomings of the pediatric cancer care system and government policy, as well as safer, more effective options for treatment. She one of many parents who have been creating greater visibility and encouraging a higher level of funding for research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general. Janet leads the effort to pass a resolution designating the 17th day in May as ‘‘DIPG Awareness Day,’’ which cites DIPG as the most compelling example of pediatric cancer.

September is Childhood Cancer Awareness Month, and the SWRH host, Wendy Nadherny Fachon, interviews Demeter, after sharing her own observations regarding both healthcare and cancer care. Fachon noticed that conventional oncologists ignore causation while naturopathic oncologists and functional medicine practitioners focus on causation. She wanted to know what caused her child’s cancer. This is relevant for SWRH, because cancer is largely a product of environmental factors, both outside the body and inside the body – polluted air, impure water, tainted foods, electromagnetic radiation and other foreign substances that cause harm to a body. These factors are invisible and effect the body in invisible ways, yet new diagnostics are available to make these causes visible and new therapies are available to make cancer and other diseases more treatable. Listen to the latest radio hour episode, For Our Children: Warrior Parenting.

Parents who lead in civic engagement set wonderful examples for their own children and inspire other parents to claim a cause and do the same.

LISTEN TO PARENTS SPEAK ABOUT OUR CHILDREN’S HEALTH

Childhood Cancer Talk Radio with Janet Demeter – https://toginet.com/shows/childhoodcancertalkradio

What is DIPG? With Dean and Wendy Fachon – https://live.childrenshealthdefense.org/chd-tv/shows/good-morning-chd/what-is-dipg/

What is Bioethics? with Rachael McIntosh – https://dreamvisions7radio.com/what-is-bioethics/

Why Eating Organic is Crucial to the Future of the Planet? With Zen Honeycutt – https://dreamvisions7radio.com/eating-organic-crucial-future-planet/

Environmentally-Safe Technology with Cecelia Doucette – https://dreamvisions7radio.com/environmentally-safe-technology-part-3/

READ LEGISLATIVE INITIATIVES FOR CHILDHOOD CANCER

118th CONGRESS (2023-2024)

H.RES 416 – Designating the 17th day in May as ‘‘DIPG Awareness Day’’

Letter to Congress and Text of Resolution – https://www.govtrack.us/congress/bills/118/hres416/text

Fairness to Kids with Cancer Act of 2023 – https://www.congress.gov/bill/118th-congress/house-bill/5405/text

Gabriella Kids First Research Act 2.0 – https://www.congress.gov/bill/118th-congress/house-bill/3391/text

LEARN ABOUT CHILDHOOD CANCER ORGANIZATIONS CREATED BY PARENTS

Jack’s Angels Foundation (Janet Demeter) – https://jacksangelsfoundation.com/

Smashing Walnuts: Cracking the Cure for Childhood Cancer (Ellyn Miller) https://smashingwalnuts.org/

The Cure Starts Now (Brooke and Keith Dessrich) – https://www.thecurestartsnow.org/

… and there are many, many more.

For Our Children (Part 1)

Cancer is the leading disease-related cause of death among children.

My journey of awakening: A few years after receiving an MBA, I earned my license to sell health insurance. Then I worked for three years as an independent agent, representing four large health insurance companies (Blue Cross, United Health, Tufts and Aflac), and I read a lot.

I read health articles about increases in obesity and incidence of autism, ADHD and diabetes among children. Having a father suffering from heart disease and a mother-in-law fighting stage 4 cancer, I also read about these diseases. And, I came to understand how the increasing usage of medical services was driving up insurance costs.

As a number cruncher, I analyzed the double-digit increases in premium costs year-over-year. These increases surpassed inflation and pay raises, by an order of magnitude in one client case that I clearly recall. Higher insurance costs were placing a greater financial burden on small businesses and their employees. This translated into more stress and more dis-ease. I envisioned our economy being pulled into a downward spiral.

The medical insurance system was an economic disaster in the making, and, in good conscience, I could no longer participate in the “system.” I left my job in medical insurance to work with urban school children in “out of school time” (OST) programs, with the intention of helping “insure” their long-term well-being through physical activity, healthy behavioral habit development and social-emotional learning, through fun activities, mostly outdoors. I sought to address the root cause of poo health.

During my first summertime youth enrichment program (2012), I witnessed the highly-processed, starchy foods being served for school breakfasts and lunches, including sugary cereals, mealy apples and gluey white bread sandwiches that stuck to the roof of the mouth. The sandwich had one wafer-thin piece of process meat and no lettuce. I took one bite and threw it in the trash can.

My youth work experiences compelled me to write articles about children’s health for a local magazine, Natural Awakenings, and my own awakening evolved. The revelations kept coming…

And WHOMP! In 2016, the most unthinkable happened. Our teenage son, Neil, was diagnosed with terminal DIPG brain stem cancer. The oncologist told him he had three months to live, maybe six, if he were to undergo radiation. Neil, my husband and I sat there in disbelief. How could this possibly have happened to an athletic child who had been perfectly healthy one year earlier?

Statistically, the DIPG diagnosis had a one in a billion chance of happening to any child, healthy or immune-compromised. The oncologist could not say what caused DIPG. She conducted a physical exam, and she asked a few questions. She asked Neil when he’d had his last bowel movement, and he could not remember. One week? Two weeks? Yikes! I got stuck in that moment, while the oncologist breezed on ahead with more questions.

Finally, the doctor delivered her recommendations – dexamethasone, a tissue biopsy and radiation therapy (drugs, surgery, radiation) – “standard of care” for DIPG. Clearly, she had no schooling in gut health and nutrition, and this was a blinking yellow light for me. Caution! Caution! Slow down! Wait. Stop right there!

Thus began our real journey of awakening. Stay tuned for additional blog entries, and check out our book.

Writing for Advocacy

Dear Senator Reed,

We’re writing to ask your support for HRes 69, the National DIPG Awareness Resolution, in 2019, and to share our child’s brain cancer story. The resolution recognizes a day for educating the public about the importance of investing in pediatric cancer research through sharing the stories of DIPG families. These stories are important for promoting the search for safer, gentler, more effective solutions for treating brain tumors in children.

On March 4, 2016, we sat with our 19-year-old son, Neil, as he received a diagnosis of diffuse intrinsic pontine glioma (DIPG), a rare inoperable form of brain cancer. He also received a prognosis of three months life expectancy… or six months, if he chose to undergo six weeks of radiation therapy, by which time, he was told, there may arise a hopeful solution. DIPG families have been listening to these same words for over 50 years, without any advancement in treatment. When Neil decided against radiation, we helped him research and develop a systemic whole body approach, combining alternative treatment strategies.

On June 4, Neil posted the following message on Facebook:

“Today is a bit of a strange day for me. It marks 3 months since being diagnosed with DIPG, the same time frame doctors originally gave me to live. According to the typical case, I shouldn’t be typing to you now.

“So why am I still here? Just some divine act of luck that decided to transcend science? No. There has definitely been some seriously divine luck, but science has not been transcended. Many things have come together to make this all happen as well as it has, but two deserve special note.

“Firstly, the importance of my mom’s understanding and applications of holistic health principles cannot be overstated. I never believed how important this dietary stuff was, but, it’s true, you really are what you eat, which makes me heaps of organic greens, consciously chosen meats, and precisely picked grains all knotted up with specialized supplements. Some may call this hogwash, but when you actually feel it help stabilize what’s considered one of the most malicious tumors, you tend to disagree.

“Secondly, this knot that’s all tied up about Burzynski needs to be let loose. When we first came down to Texas we obviously had no idea what kind of rats nest we were getting into with the FDA. My family and I took in the picture as given, weighing all probabilities, and decided this “renegade doctor” was worth the risk. A 30-year track record of anecdotal success paired with the fact that they were actually offering a clinical trial, something that requires enormous time and effort to put on, gave me more than enough confidence to give them a shot. Why waste their time and money on something they didn’t believe actually works?

“The FDA had to give the trial the green-light-go-ahead, which they did over a year ago. Then, suddenly, the day I began treatment, they decided to pull the plug from thin air, giving little more reason then “cuz we said so.” Thank God for a good judge who cared about human rights, or I might well just be another bug-on-a-rug.

“I have now been on treatment for a fairly significant portion of time and can confidently say it is helping. There is very real legitimacy to the claims of the Burzynski Clinic, and furthermore they have continued to show us nothing but the greatest human hospitality.

“Now, I continue to press on with these forces guiding my health. Only time will tell how I progress, but I approach tomorrow with faith. There are a lot of forces out of my control, but no matter what, I continually remind myself, I get to be alive here and now. I have found the present is a gift worth appreciating a little more.”

Later in June, we received a letter from from Vice President Joe Biden about the cancer moonshot project, which stated: “We will ensure that the patient community is heard, so that patients and their families are treated as partners in care and are given access to their own data and the opportunity to contribute to research.” It’s time for the patient community to be heard. DIPG families have many stories to tell. We all have knowledge, experience, data and heartache to share. Neil passed away February 19, 2017, and we want to assure that his death and suffering, and that of so many other children, was not in vain.

Please refer to the attached photos and the HRes 69 Senate packet, created by the DIPG Advocacy Group, and help us by leading the way to support HRes 69.

Sincerely,

Wendy & Dean Fachon

This is an example of writing for advocacy. Senators Reed (RI) and Rubio (FL) will be leading the way for HRes 69 in the U.S. Senate in 2019. Incidentally, this coming year marks the 50th anniversary of the first man’s first step onto the moon. That was Neil Armstrong. Incidentally, he lost his daughter, Muffy to DIPG in 1962. And, incidentally, our son, Neil, was named for Neil Armstrong. We are inspired by coincidence and urge DIPG families and friends to call, write and visit their congressmen and senators to request support and share their stories. We are here to help people edit letters for impact. In fact, why not compile and publish these stories in a book to dedicated to advocacy and centered around the cause that has touched all our lives – finding a cure for cancer. The goal of this advocacy project is fifty stories, representing DIPG families and friends in all fifty states. DIPG stories from outside the U.S. would be a welcome bonus, because we want to know what the experience is like in other countries. Please submit advocacy letters, which include a call to action, story and pictures, here. Limit to under 750 words, and make every word count.

To learn more about DIPG advocacy, listen to the December 13 podcast of Childhood Cancer Talk Radio, Every Voice Matters: The Power of Initiative in Advocacy.