Childhood Cancer Talk Radio Podcasts

From Hawaii, the Island of Oahu, Michela Haywood and Krystle Ilar share their families stories of childhood brain cancer, giving us a window into their world. DIPG--the second most commonly diagnosed brain tumor in children, is an equal opportunity destroyer of hope. In the beautiful state of Hawaii, where family is everything, DIPG lurks to steal the hope of families as it does on the mainland USA. But DIPG's darkness is no match for the strength, faith, and hope that Michela Haywood and her late daughter Kaylan bring to the childhood cancer community. the Kaylan Strong Fight Like A Warrior Foundation helps families, supports research and lends a helping hand where few are able, and hope is scarce. Conversation with Krystle Ilar and Michela Haywood gives revelation on the much neglected topics of early death, Heaven, and the powerful dimension of faith.

A look back and forward for the childhood cancer awareness movement, we begin with the Creating Hope Act of 2012, the Alexis Agin Identity Theft Protection Act of 2013, the Gabriella Miller Kids First Research Act of 2014, the DIPG Awareness Resolution, forward to the Give Kids A Chance Act. Mina Carroll gives her famous, drop-mike "Bean's Ball" speech which inspired today's H. R. 2210, the Fairness to Kids With Cancer Act. Featured also is the signing, by President Obama, of the Gabriella Miller Kids First bill, and the urgency powerfully symbolized by H. Res. 404, the DIPG Awareness Resolution, or #Moonshot4Kids. Included is an excerpt from the 2020 Briefing on Capitol Hill, Dr. Adam Resnick (CHOP) speaks to this time factor so powerfully illustrated by DIPG and childhood brain cancer, and finally, Dr. Michelle Monje (Stanford) speaks to the power of collaboration and awareness in accelerating a much needed cure for childhood brain cancer.

As 2022 begins, we share with our listeners 2 excerpts, a sneak-listen if you will, from "The Hill We Climb," a movie Grace Wethor, DIPG survivor and actress, has produced to promote advocacy for childhood cancer, premiering on January 24. We also share with you a powerful speech by the late Jace Ward, who lost his life to DIPG in July of 2021. The two advocates were friends, and continue to have impact for the childhood cancer community, lending extra star-power to DIPG-the deadliest childhood brain cancer-that it might succeed in letting the world be aware of this voiceless and lost population, and the lack of adequate support for childhood disease research.

This episode features in an interview from "The Hill We Climb, with the host of Childhood Cancer Talk Radio, Janet Demeter, followed by a one-time airing of "Jack's Song."

Jeni Miller joins us from her home in New Lothrop Michigan to share the story of Braden “Buddy” Miller and the Foundation that is now his legacy.  The Team Buddy Forever Foundation is on mission to fund awareness of pediatric brain cancers while assisting families of children diagnosed with DIPG, giving them the necessary financial support and networking resources for treatment options during this traumatic period.

From a brave course of experimental treatments which took the family to Monterrey Mexico, Jeni candidly and generously shares her experience as a mother, and now founder of an organization which proudly helps other families in the spirit of love and joy that Buddy wanted. Always thinking of others, and the well-being of his family, Buddy and generous spirit of their hometown community is making a difference for children with cancer, one family at a time. Visit teambuddyforeverfoundation.org for more information and resources.

This episode features an interview with Jessica Hester, CEO of Brooke's Blossoming Hope for Childhood Cancer Foundation, a tour-de-force organization inspired by the beautiful life of Brooke Hester. The foundation's two-fold mission first empowers others, especially children, to make a difference for children with cancer by raising awareness through service projects, education and advocacy initiatives, and second, to raise money for research with the goals of early detection and targeted therapies that will be gentler and more tolerable for children.

Childhood Cancer Talk Radio has the privilege of hearing Brooke's life story and her cancer story from her beautiful mother, Jessica Hester, and the inspiration of Brooke's Blossoms. The beautiful golden flowers are a constant and loving manifestation and expression of this girls spirit which lives on through the foundation and all of the children it touches, with its programs bringing smiles and hope to children in multiple countries around the world.

For this special edition of Childhood Cancer Talk Radio, our guest is a childhood cancer survivor of a diagnosis which, statistically speaking, takes most every life afflicted.  Numbers and statistics guide our perspective when we’re in uncertain territory.  Those who do survive against unbelievable odds bring us all hope, traversing the gauntlet of doubt, cynicism, and sometimes ostracization.  More often than not, they tend to keep a low-profile rather than create controversy, and can be difficult to find--even when they would like to share their story to a larger audience.  Laurel Simer, joining us from Utica New York, is originally from Minnesota.  Now in her early 30s, she’s been an athlete all of her young life; she played soccer, lacrosse and also hockey, which brought her to Utica originally, to play for Utica College where she now works for the sports division leading the PR department.  She's been surviving a deadly childhood brain cancer since she was 10 years old, DIPG, diffuse intrinsic pontine glioma.  And for a good amount of that time, she herself had no idea about the true nature of her affliction.

This episode features a real-time discussion of what goes into the work of advocating for a childhood cancer license plate. Paul Miller, childhood cancer research advocate from Colorado, has successfully worked at supporting the Colorado plates for childhood cancer. Fabiola Flores, childhood cancer advocate and parent who lost her daughter to DIPG, lives in Los Angeles and is considering initiating this activity in California; we learn of her tragic loss turned to inspiration to help advocate for others.

Childhood Cancer Talk Radio's host Janet Demeter, also living in California in the greater Los Angeles metro area, considers teaming up with Fabiola as Paul elaborates on the work ahead-- a considerable project due to the size of the state and the sheer volume of signatures needed for such an enterprise. This ongoing conversation will be revisited in 2022.

This episode highlights H. R. 623, important funding legislation for a crucial program at NIH for childhood disease research. Ellyn Miller, CEO of Smashing Walnuts Foundation, joins us to share the history of this legislation as well as the work today and forward into this new year supporting this and other activity in the childhood cancer advocacy community.

Ellyn's daughter Gabriella passed away in 2013 to DIPG, diffuse intrinsic pontine glioma, but she went out with a huge movement forward for pediatric research. Her enthusiasm and advocacy for other children was caught on tape that went viral and inspired the Gabriella Miller Kids First Research Act signed into law by President Obama in 2014 with her family members, including her little brother Jake, all present. Ellyn's storytelling is captivating, and the magic of Gabriellas legacy is palpable, and powerful in the telling. Visit: childrenscancercause.org advocacy action page to support this crucial legislation today.

Paula Carter, founder of the Scott Carter Foundation in Tulsa, OK, joins us with Caitlyn Barrett, National Director of Research and Programs for CureSearch, to discuss their collaboration in supporting a new clinical trial for DIPG.

The Scott Carter Foundation has been supporting childhood cancer research for three decades in honor of Scott Carter (Paula's son)and his 3 year battle with bone cancer from which he perished in 1996.

CureSearch has for its mission the directive to fill in the gaps of the medical research system which have historically failed children with cancer. Working with industry, researchers, and parents, CureSearch identifies and targets crucial areas of research needing support in order to advance research and drug/therapy development for childhood cancers. CureSearch continues to collaborate with many foundations like Scott Carter Foundation across the United States to provide hope and promising therapies for children with cancer.

Catharine Young, Executive Director of the Shepherd Foundation (Alexandria, VA) visits with us to give history and background to the Cancer Patient Equity Act of 2021, H. R. 5377, newly introduced to the US House of Representatives. With a focus on equity for patients with rare cancers, which comprise a whopping 95% of cancer diagnoses in the United States, the Shepherd Foundation has created a campaign to unite the public and Congress around this idea of equity in diagnostics and access to viable treatments. For too long, the childhood cancer community has suffered under the tyranny of semantics and the use of the word "RARE." All childhood cancers are considered rare diseases and the qualifier rare has been overused to the point of threatening needed consideration for our children with the false idea of irrelevance, a consistent tool of the corporate world to justify the lack of investment into cures for childhood cancers.

The Cancer Patient Equity Act has two primary components; 1, to ensure patient access to the latest diagnostic tools--molecular diagnostics, to be provided by Medicare, Medicaid, and CHIP; and 2, an educational program designed and implemented for physicians and the general public on what genomic testing is, how it can be used, and the role of genetic counselors.