Childhood Cancer Talk Radio Podcasts

Clayton Zook shares the story of his beautiful daughter Kirah, their journey with CMMRD, childhood cancer, and her legacy of music. Hear their story in simple, personable conversation, of love, honesty, and new commitment to life and learning, and valuing the heart's calling above all else. Spoiler alert! You'll hear the first release of Detroit's shining star, Kirah's song, "Sway," at the end of the podcast. From longterm misdiagnosis to finding their crusaders at Sick Children's Hospital in Toronto, Clayton Zook dedicates his life's work to his daughters legacy, and supporting research with her music.

Dr. Charles Keller, Scientific Director of the Children's Cancer Therapy Development Institute, joins us with Dr. Anju Karki, post-doctoral fellow and DIPG Tumor Cell Hotel project leader describe this creative design to affect a real solution for children diagnosed with arguably the deadliest pediatric brain cancer, diffuse intrinsic pontine glioma. Based on the concept of the humorous commercial in 1978, the Black Flag Roach Motel, where 'roaches check-in but they don't check out," the project is designed to attract and then disempower the tumor cells with a specially engineered "film" surgically implanted in a high-risk procedure.

As with all other projects in the 2019 CCTR Research Series, the DIPG Tumor Cell Hotel is funded by a parent-led organization, and in this case, Storm the Heavens Fund of Philadelphia, PA. The 2nd half of the broadcast features Executive Director Mina Caroll who lost her 8-year-old daughter Philomena to DIPG in 2016, in a frank discussion about the unconscionable chronic lack of research funding and activity for childhood cancers, with DIPG treatment options seeing no meaningful change since Neil Armstrong's daughter Karen died of DIPG in 1962.

Jeri Wilson, Executive Director, has been with PCRF(Pediatric Cancer Research Foundation) since September of 2011 and has taken this organization from a $1.5 million dollar operating budget to a $3.5 million dollar organization. All while keeping 84% of the funding going straight to research.

Since 1982, PCRF has partnered with businesses, foundations, and individuals to improve the care, quality of life and survival rates of children with malignant diseases, and has been directly instrumental in the development of life-saving therapies.

Quietly and consistently PCRF has created a proven pathway to funding pediatric cancer research--Childhood Cancer Talk Radio's Hero of the Week!

We follow-up and finish our conversation with Randy Hinton, father to Hayley who was diagnosed with DIPG (brainstem glioma-diffuse intrinsic pontine glioma) and perished to that disease some 13 years ago, regarding causes and conditions that remains the burden of parents to discover in their never-ending hunt for answers. We also discuss the world of alternative therapies and the difficulties families face when they wish to pursue treatments outside of the "box" of mainstream medicine. And then, we are joined by Jessica Doeden of Springfield, MO, a 34 year old survivor of the notorious DIPG, and hear about her success with the controversial therapy at the Burzynksi Clinic in Houston, TX.

As the Chief Executive Officer of Children’s Cause for Cancer Advocacy, George Dahlman is responsible for the strategic management and operations of the nation’s preeminent childhood cancer policy organization. Mr. Dahlman is responsible for identifying and advancing issues that will improve the treatment and lives of childhood cancer patients and their families with Congress, the Administration, federal agencies and state governments. He is also responsible for ensuring that families have the opportunity to participate as advocates in the policy process.

Learn about the latest issues in policy facing a changing Congress, and how families of children with cancer can participate in the advocacy process to affect positive change in their experience and others with CCCA.

Randy Hinton joins us from Summerville SC to discuss the circumstances surrounding his daughter Hayley's diagnosis with brain cancer and the difficulties the family had in procuring effective and consolidated treatment for her. The controversial Burzynski Clinic in Houston TX takes center stage, as does Texas Anderson at Houston and the Children's Hospital in South Carolina where Hayley was diagnosed with diffuse intrinsic pontine glioma at the age of 5. Randy's experiences make clear 3 points of contention that many parents have with our medical research system: 1. numbers and profits rule, not saving lives 2. promising alternative therapies are dismissed and not investigated . 3. Actual cases of survival with alternative treatments are in some cases silenced and sent into exile, again without any investigation into causes and conditions of disease.

A provocative discussion to say the least, please stay tuned for our follow-up show with Randy and an actual survivor of DIPG.

Wendy and Dean Fachon of Rhode Island join us to talk about state legislation, national resolutions and the legacy of their son Neil, making a strong case for "Right to Try." Paul Miller from Colorado shares about the power of social media and the magic of belief, with 2 successful campaigns granting the requests of children wanting to meet their heroes. Paul also has had a knack for blooming childhood cancer community facebook groups. Elizabeth Psar from Knoxville TN talks about bringing an experience of utter darkness national attention, and the beginnings of DIPG Advocacy Group. All of these differing experiences and the ideas thus inspired have found their common ground in a public request for greater research consideration for pediatric cancers, for which there are few, if any, actual solutions. See how a simple piece of populist legislation incorporates all of these efforts in the plea for national discussion and acknowledgment, and the pathway to a more responsive medical research system.

Morally, rationally and in every sensible way, the experience of DIPG, diffuse intrinsic pontine glioma, inspires bereaved parents to fight for others and researchers to find a cure. Brain cancer is #1 in pediatric cancer incidence, and DIPG is the 2nd most common pediatric brain tumor.  It's also responsible for the majority of pediatric brain tumor deaths annually in the United States.  We visit first with DIPG parent Gerry Tye in Australia, who shares the impartial and devastating nature of the disease and all of its consequences, and how literally within days of his son being completely normal, he was given a few months to live. Talin survived only some few weeks past his diagnosis.

Dr. Noah Berlow of the Children's Cancer Therapy Development Institute brings us the perspective of a scientist to the disconnect between the profit-motivated medical research industry and the real-time data on a ruthless killer of children which doesn't generally qualify for investment. Ultimately, the hopelessness of DIPG inspires its affected communities, civilian and scientific, to reach for a cure for cancer. Awareness is the key to progress and research into causes and conditions, and the moral imperative to prioritize urgency of need. When a death sentence prevails in young children for over 50 years, the collective agony of loss becomes a compelling force for change.

Jackson is a boy from Colorado fighting a devastating foe: DSRCT. Desmoplastic Small Round Cell Tumor (sarcoma) is a frequently misdiagnosed, rare pediatric cancer with only 200 known cases in the United States, and a poor prognosis. His father, Jason Frank, candidly discusses the monumental challenges confronting his family, and the less-spoken psychological realities that parents of children with cancer invariably face. Jackson's survival time is uncertain, though statistics indicate he may have less than 2 years; his dream is to meet his hero, Peyton Manning, retired star quarterback of the Denver Broncos.

Donna Speckhard brings us a sneak-peek of the upcoming docuseries "The Promise" chronicling the experiences of children with cancer and their families and shedding light on important issues that affect us all in the childhood cancer community.

The lack of viable solutions for them poses the question, why it is that we must fight so hard for awareness of their suffering, and to justify greater investment into cures for our children? The lack of solutions for children with cancer makes this road extremely difficult for families to travel, with their lives forever changed, and nothing certain.

Visit the unseen world through which families must forge new paths on the journey to survival for their children, and a better future for those yet to be diagnosed. The prologue with "Elizabeth's Story" is available for viewing on the series website, at www.thepromisedoc.com/watch. The series is currently in production.