Childhood Cancer Talk Radio Podcasts

This podcast is a continuation of our March 3 show, "Living with DMG: Scientist Father Philip Tan blazes a Trail for Xavier", where Xavier's father Philip gave us and extensive window into the life of his family and how it had changed since the diagnosis of a deadly brain tumor. 

In part 2 we address more closely the restrictive nature of clinical trials, and the fact that using drugs off trial allows flexibility to use other drugs, supplements, and other therapies in combination.  Also, the family was discouraged from traveling while there were no promising clinical trials being offered at their local children's hospital; Philip thought, "It shouldn't be so hard," as he was seeking ONC201 and found through social media that he could obtain it for Xavier in Germany, of course for an enormous cost. 

Philip is intent on sharing his information, raising awareness and blazing new trails so that others won't have to go to the lengths--many of which have not been as effective as he had wished--to extend and save the life of his son.

Today’s show marks the beginning of our Spring-Summer 2022 Series, “Your Angels Are Real,” every third Thursday, where I’ll be interviewing a number of gifted intuitive healers of a wide variety of experience and use of different healing modalities. Today’s show features Heather Murison, Registered Nurse and intuitive healer, in a side-by-side interview with Raegen Sieck, looking to hear from her daughter Lucy, and seeking development of her own intuitive gifts for personal healing. Lucy was afflicted with DIPG, a deadly pediatric brain cancer, less than 2 years ago.

The knowledge and experience shared here is purely elective with the "Your Angels Are Real" series; practitioners are professionals, or professionals in training. Our aim is to open up the concept of healing and how we find help, and create an allowing space for spiritual experience and learning with an all inclusive ideology which acknowledges the reality of angels, guides, crossed-over loved ones, and an all inclusive concept of God, as a validating influence.

Tracy Ryan is an innovator, entrepreneur and problem-solver with a special mission, to save her daughter Sophie who was diagnosed with brain cancer before she was a year old. Tracy launched and was CEO of Cannakids, a company which pioneered the development of cannabinoid and terpenoid combinations to treat patient's cancers based on the genetic mutations in their diseases. Tracy witnessed many cases where patients were sent home to die where they have come home to not just survive but thrive because of the use of cannabis oil medicine. Alongside this work her charity "Saving Sophie" works to fund research and crucial investments for pediatric brain tumor research.

Today, she leads NKORE, a biotherapeutics company combining proprietary-cellular and protein-based diagnostics, novel AI analytics and a natural, proprietary approach to “Super Charging” Natural Killer Cells to deploy a new era in immuno-therapeutic medicine for the treatment of cancer in patients of all ages. Once again she is at the cutting edge of what we know about immunotherapy and cannabis oil therapy, and her daughter Sophie is doing well today.

In our many discussions with parents of children afflicted with brain cancer, perhaps the most telling are those of scientist parents who, like all other parents, are left to their own devices to try to save their children. Philip Tan's son Xavier, who was a in his prime as a college athlete when diagnosed, is limited in his mobility and suffers other mentally debilitating conditions associated with complications from his brain cancer. Phil discusses with us in no uncertain terms:

a. the lack of awareness of childhood brain cancer among physicians causing delayed diagnosis and other complications

b. what neuro-oncologists offer as treatment options

c. the limited number of clinical trials available locally

d. how the family found the drug ONC201 off-trial, paying out of pocket,

and e, what alternative, complementary modalities they've used which appear to have been helpful to Xavier. Phil shares as optimistically as he can his hopes for Xavier's improvement and comfort, but awareness of the probability of his approaching demise, a tragedy which no family should have to contemplate.

Parent advocacy for childhood brain cancer at the state level in South Carolina with Randy Hinton begins today's show, as he shares his relationship with the South Carolina Department of Environmental and Health Control, and the SC Cancer Registry which operates under that department. Randy's advocacy supported the 2021 South Carolina DIPG Awareness Day Proclamation on May 17th, and helped orchestrate an auspicious event at the state capitol that same day for childhood cancer awareness.

After our exclusive reporting on the Cancer Moonshot Announcement on Feb. 2, 2022 at the White House, we hear from DIPG Advocacy Group's leadership Marcelo Ortigao, Medical and Scientific Advisor, Paul Miller, Co-Founder, and Janet Demeter, Founder about the Moonshot4Kids Congressional Briefing planned for May 17, 2022.

Lynette and Marc Apodaca’s son Marc Jr was diagnosed in 2007 with a diffuse intrinsic pontine glioma (DIPG). The couple quickly realized how little help there was in the form of treatment, information and support for the families facing this deadly brain tumor. They found in their journey that once parents and a community are faced with this cancer, each unknowingly fosters a spirit of compassion and the willingness to work as a team, as, "we are the only hope our children may have." Lynette generously shares with us the story of the support with which Marc Jr Foundation consistently provides families, their partnership with CBTF (Children's Brain Tumor Foundation) in providing a forum of support for bereaved families, and her collaboration with the Jace Ward #Toughtogether group in creating a larger network of support for families, research, and clinical trial access for the childhood brain cancer community.

Ryan Agnew gives us a remarkable window into his beautiful home life with wife Alison, and two children, Aspen who is turning 6 years old, and her little brother not quite two. Aspen is feeling well despite unfortunate scans of progression from DIPG, and now secondary tumors, and is approaching that point when the family may very well lose their precious daughter. Ryan describes the beauty of his life as well as the torturous mental/emotional reality that comes with a DIPG diagnosis. The family generously shares their experience in support of the national DIPG Awareness Resolution, participating in Congressional Office meetings, and allowing childhood cancer as well as mainstream media to follow their story. Ryan's honesty and generosity of heart paints a picture of hope and love which is stronger than fear, or death. Thank you Ryan. We must do better for our children, and if anyone needed a moonshot, it's our kids with cancer.