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This Podcast is going to be about Pediatric Cancer and the need to keep the awareness of this terrible disease in the public eye. My plan is to be able to interview a wide spectrum of people who all have a passion and a stake in finding a way to make the lives of these Pediatric Cancer Patients easier. I will interview oncologists, nurses, recovered patients, parents who have had to oversee their children's cancer fight, heads of Pediatric Cancer Foundations and Organizations , and others who would like to use this forum to advocate for these children.
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After watching her son Nicholas spend 188 days in the hospital with Acute Myeloid Leukemia, Asley Haseotes decided to start a non profit to help future Pediatric Cancer patients be able to have some enjoyment during their mostly difficult hospital stays. She and her husband Ari named this non profit ONE MISSION and it is made up of many creative and successful programs which have brought smiles to the faces of these kids. This non profit has raised 14.6 million dollars and has helped to support 36,000 kids in hospital settings around the Greater Boston area. Her son Nicholas is well past his original diagnosis of over 10 years ago and is thriving as he is in his teenage years.
Dana-Sue and Bill Crews both had siblings who were diagnosed with cancer when they themselves were just 7 years old. They will discuss that, Bill's eventual adult cancer diagnosis in 2003 which was thought to be totally incurable but which saw him 5 years later competing in the Iron Man Triathlon, and his health 19 years later which is fine.Dana- Sue and Bill will also talk about the 2 books they have published concerning Bill's cancer battle, and their publishing company Bell Asteri- which they started to encourage young authors who have been through pediatric cancer, to share their stories with others.
Michael Shpigelmacher is the Founder and CEO of Bionaut Labs. On today's Podcast, Michael will talk about an engineered tool which is showing MUCH PROMISE, as it tries to solve what has been the most difficult form of Pediatric Cancer in DIPG.Michael will talk about what his company has designed which is a Bionaut or a Robot, the size of a grain of rice, which can get to the exact critical areas inside the brain stem with the proper medicine being attached to it, opening up areas of the brain which have not successfully been treated before. The hope is that this type of Pediatric Brain Cancer, which is now considered a near certain death sentence, will become one that is chronic in nature, and maybe even have a better outcome than that. What Bionaut is doing could be a serious game changer in this DIPG fight.
When 3 year old Avery Moskowitz was diagnosed with a Wilms Tumor she went into surgery to have it removed. During the surgical procedure, her doctors had to stop the surgery as they found that Avery did not have a Wilms Tumor, but instead had Stage 4 Neuroblastoma.Thus began a journey that has seen Avery fight her way past so many difficult issues and side effects but there she is now 8 years later, surviving and trying to live the best life that she can.
Annie Bartosz still considers her brother Jack, who passed away from Neuroblastoma in 2012 to be one of her best friends as he looks down on her from above. Annie will talk about Jack, and her father John who passed away from the late effects of the cancer that he had as a young adult.Now a sophomore at the University of Pennsylvania and hoping to eventually start a career in Pediatric Oncology, Annie will also discuss her role as an advocate for Pediatric Cancer, which began when she was 11 years old.
Susan Giusto and Dr. Scott Coven will talk about the Pediatric Cancer problem of Delayed Diagnosis on today's podcast. This happens more than it should, as Pediatrician's can take too long to order the proper procedures or tests which ultimately can diagnosis whether a child has cancer. By waiting too long, this can put the child in a position where their treatment begins much later than it should, causing all types of issues that be detrimental to their recovery.
During a 3 week period in 1997 Stephanie Peters experienced nausea, dizziness, and finally neck pain before her Pediatric Brian Cancer diagnosis of Ependymoma. Stephanie will talk about that very difficult period in her life which fortunately ended with her final diagnosis in 2002. Over the last 20 years , Stephanie has managed to lead as good a life as possible, although of course she has had to deal with a number of physical side effects, as well as some psychosocial side effects as well. Looking at Stephanie, you would never know that she has had any illness, never mind being a 4 time survivor of this disease.
Rosaria Kozar will talk about her son Brody who she lost to Rhabdomayosarcoma in 2015. For several years after Brody's passing, Rosaria struggled to figure out what she wanted to do with her life and decided that her best path forward would be to get involved as an activist and advocate in the fight against Pediatric Cancer.Rosaria now hosts the excellent Pediatric Cancer Podcast Living With Scanxiety which is a subject of great importance to the Pediatric Cancer community. Rosaria is also involved in many other aspects of Pediatric Cancer as she helps others try and deal with what she and her husband had to witness as they lost their beloved son.
The Art In Giving is a non profit started by Eliane and Gary Markoff, after their daughter Rachel Molly passed away from a form of Pediatric Brain Cancer in 1992. Since that time, they have raised over 2 million dollars for research to try and help patients and their families conquer this terrible disease. The Markoff's recently awarded a $250,000 grant to Dr. Mariella Filbin at Dana Farber who is combining with Dr. Suzanne Baker from St. Jude's to tear apart donated tumor tissues and individually sequence them, which they hope will lead to allowing the immune system to break down bad cells which are involved in the Pediatric Brain Cancer DIPG.
Jeri Wilson has been the Executive Director of the Pediatric Cancer Research Foundation for 10 years. Under the umbrella of this foundation is Dribble For A Cure, a fundraiser that takes place at St. John's University and UCLA. Since 2008, this event has raised nearly 2 million dollars for Pediatric Cancer Research. Members of both schools basketball teams, its coaches, alumni, and students get together to support this event, which truly is just getting started.This fundraiser recently partnered with the V Foundation, and expansion in the number of schools that participate in this event is on the way. Along with this change, the event has now changed its name to Dribble For Victory Over Cancer and you can just type in that name to learn more about this fundraiser.
Sarah Bartosz recently became the Executive Director at Beat Childhood Cancer and has certainly navigated a more than difficult path to get there. Sarah and her husband John lost their son Jack to Neuroblastoma after he fought nearly 7 years with this Pediatric Cancer in 2012. Then just 4 years later, John passed away from the late after affects of a Young Adult Cancer that he had battled with while he was in his 20's. We know that things come in threes and although she is doing well health wise, Sarah was diagnosed with Breast Cancer just a few years ago.Sarah's journey has been a very inspiring one as you will find out on today's podcast.
Theresa Beech's son Daniel was diagnosed with Osteosarcoma when he was 11 years old and passed away from this bone cancer in 2016 when he was 13 . Theresa, a Space Engineer at NASA was able to use her expertise in collecting and analyzing data, to identify a drug which allowed Daniel to live 4 months longer when the thought was that he had only 2 weeks to live.Before he passed away, Daniel asked his mother to continue to try and help other Osteosarcoma patients, and Theresa has come up with a number of initiatives and solutions which are making the future of Osteosarcoma patients, especially patients that have relapsed, look brighter then one that they currently have.
After a 15 month battle with Medulloblastoma which began in July of 2006 and sadly ended in October of 2007, 5 year old Mason Leach lived a very short and very meaningful life. Mason's mother Danielle will detail Mason's battle and will talk about what she has done since that time to fight for all of these kids who have suffered from both Pediatric Brain Cancer and other cancers that kids have unfortunately been diagnosed with.Danielle will talk about her current position as the Director of Advocacy and Government Relations at the National Brain Tumor Society, and will discuss many of the advancements in the Pediatric Cancer fight that she has been involved with.
While a 20 year old student at the University of Kansas in 2019 Jace Ward was diagnosed with DIPG, a Pediatric Brain Cancer that normally strikes kids who are much younger than Jace was. On today's podcast his mother Lisa will detail his life, in which Jace spent the close to 26 months after his diagnosis advocating with the clearest and strongest voice possible, that the kids who were to come after him and suffered a similar fate needed to be given the hope that there would be a better outcome than the one that he and too many other DIPG patients have paid the ultimate price for.With everything that Jace accomplished during his more than 2 year battle, he leaves a lasting legacy and is one of the Iconic Warriors in this Pediatric Brain Cancer fight.
Adriana Lewin's soon to be 4 year old son was diagnosed with Rhabdomayosarcoma in November of 2019. A licensed Therapist, Adriana started the Family Chemotherapy podcast and discusses the many issues that parents go through after their child is diagnosed with any form of Pediatric Cancer. Some of the topics that Adriana discusses in today's podcast include coping with the diagnosis, toxic positivity, being ghosted, and isolation, which can happen to anyone trying to deal with what is happening with their child. Thankfully, Adriana's son is doing well today.
Sydney Sherwood's younger brother Billy was diagnosed with Stage 4 High Risk Neuroblastoma when he was 13 months old in 2008. Sydney is 5 1/2 years older than Billy and she will talk about his Pediatric Cancer battle, in which she there every step of the way during his fight and recovery. Sydney considers Billy to be her best friend.During this period, Sydney became a very talented Singer and Songwriter and in 2019 she published an Extended Play entitled Beauty From Ashes and followed that up during the Pandemic by producing her first album called Headspace.Sydney also received a golden ticket to go to Hollywood from judges Katy Perry, Luke Bryan, and Lionel Ritchie after trying out for American Idol.Sydney's goal with her music is to inspire others and she will always be involved in the cause of Pediatric Cancer, mostly through her work in the Arms Wide Open Foundation, which was started by her well known and well accomplished Pediatric Cancer Advocate mom Dena and her father Billy.
When she was 14 years old during the summer after completing 8th grade, Dana Giordano was diagnosed with cancer in one of her ovaries. After having surgery, she completed her recovery process and then began a running career first in high school and then at Dartmouth College, where she was a 3 time All American and finished 3rd in the National Championships in the 1500 meters. From there Dana went on to qualify for the Olympic Track Trials in 2020 and now hosts her own Podcast, More Than Running, which focuses on Women's Runners who have accomplished many things on the track and on the roads and have great personal stories to tell.
Jenny and Mark Mosier's son Michael was doing all of the things that a healthy soon to be 6 year old boy was doing in August of 2014. Less than a month later, his situation and life for the Mosier's changed cruelly and dramatically when Michael was diagnosed with DIPG, the most deadly from of Pediatric Brain Cancer. Jenny will discuss her son's 8 month battle against this disease and how he continued to try and live his best life possible before his passing in May of 2015.Jenny will also talk about the Chad Tough Defeat DIPG Foundation which has raised millions of dollars for DIPG research, as the hope to finally unlock the mystery of this disease continues.
Patti and Al Gustafson will talk about their son Michael, who passed away after a 5 year battle with the pediatric brain cancer Medulloblastoma, During the late stages of his disease, Michael told his mom that he willing to give up his life "so that he could see if I can find a cure for cancer" I will also speak with Dr. Angela Waanders , who will talk about the importance of post mortem brain tissue donations, which could be a game changer in the future for pediatric brain cancer patients and their families. Advocating for these tissue donations is a major part of the Swifty Foundation which Michael was the inspiration behind, and which the Gustafson family run today as they are doing what they can to fight for these kids who receive such a difficult diagnosis.
At the age of 14 in 2014, Sara Willis was diagnosed with a form of Brain Cancer known as Bifocal Pure Germinoma. Her mother Angie will talk about her daughter and what Sara went through to in the 1st year of her treatment, which led to being in remission one year later.Unfortunately, Sara relapsed and passed away in November of 2018 when she was 18 years old.After her passing in 2019, Angie started the Non -Profit Sara's Acts of Kindness, which has twin objectives of raising money for Brain Cancer research, and in performing simple acts of kindness which is what Sara would have wanted most.
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