Help and Hope Happen Here: Recent Episodes
Mark Levine
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.
Elena Lappostato was complaining of mouth pain in September of 2025 and just a couple of weeks later, she was diagnosed with Neuroblastoma when she was 3 years old. Since that time , Elena has undergone difficult treatment including 2 autoglous stem cell transplants and is now doing well and has recently begun the next phase of her treatment which is Post Consolidation.
After winning the Vault event and finishing 2nd in the All Around Competition in the Hawaii Gymnastics Championship in November of 2017, 11 year old Kaylan Haywood competed for the first time since her winning performance in January of 2018. What resulted was Kaylan's side being weak, her foot was dragging, and her arm was hanging. In February she was diagnosed with DIPG and only was able to live for 6 more months, as she passed away on August of 2018 from this most dreaded form of Pediatric Brain Cancer.
Dana Quiroga felt a pain in her knee during her entire soccer season in 2023 and during that summer this pain did not go away, leading to her diagnosis of the Bone Cancer Osteosarcoma. Dana underwent a replacement for her knee and tibia with a prosthetic substitute and now 3 years later, Dana is feeling well and has already chosen what she plans to do with her career which will involve Pediatric Nursing.
Grace Fulcher was 16 years old in 2015 when she began to complain about double vision. Her double vision led to a diagnosis of a non curable Pediatric Brain Tumor known as an Anaplastic Astrocytoma. Grace was given 3 years to live and she did her very best in trying to make those 3 years meaningful. Grace continued with her high school studies, being a member of the National Honor Society for 3 years, and graduating Summa Cum Laude with a 4.4 Grade Point average. Because of the acceleration of her brain cancer, Grace went to college for only her first semester of freshman year in which she hoped to become involved in Neo Natal care. Grace passed away at the age of 19 on October 24th of 2018.
Darline Medina's daughter Brooklyn was full of health for the 1st 2 years of her life until the winter of 2023 when Brooklyn began to experience abnormal movements in her left eye. Her eye looked okay when examined by an eye doctor but her walking did not look okay and this led to her diagnosis of DIPG. Brooklyn's diagnosis took place in April of 2023 but her life span from that day until her passing on February 17th of 2024, was just 10 months, and took place one month before her 4th birthday.
Jameson Doud was nearing his 8th birthday in August of 2024 when he was diagnosed with a Midline High Grade Glioma Pediatric Brain Cancer. In March of 2025 the Doud family got very good news that there were no signs of any cancer from the most recent scans but just a couple of months later, Jameson's scans showed that his cancer had spread to his bone and Jameson was not expected to last until Christmas of 2025. That expectation went too far unfortunately and James on passed away from this disease on August 12th of 2025.
In May of 2025, 5 year old Rosie Wittmayer was found to have a double ear infection and then began to develop fevers every 2-4 weeks. These fevers were checked out regularly but no solution was found , with one possibility floated that she had the Mumps. Finally on August 27th, Rosie and the Wittmayer family received her diagnosis of B Cell Acute Lymphoblastic Leukemia. Rosie has been through nearly 11 months of treatment and still has more than a year left as her scheduled date to end her treatment protocol will be in November of 2027. Fortunately Rosie is doing well physically .
Zach Arter had been serving youths in Omaha Nebraska for 15 years in various capacities and then decided to focus on helping Pediatric Cancer patients in August of 2024. That is when he started his HELP 1 PERSON TODAY with this non-profit which tries in a number of ways to help these kids who have to go through difficult treatment during their individual cancer battles.
As Toni and Dylan Franklin were in the playground with their children Noelle and Dylan in the spring of 2024, Noelle asked her dad to look at a bump that had formed on her leg. Withing a week Noelle was diagnosed with Osteosarcoma, a very difficult Bone Cancer. After being treated at the Pediatric Cancer hospital at Duke University which did not go well, Noelle was transferred to the Pediatric Cancer hospital at the University of North Carolina. Despite the treatment that was more to the benefit to Noelle, she was unable to recover and passed away on May 12th of 2025, almost exactly one year after her original diagnosis.
After being shuttled back and forth between her home and hospital emergency rooms for months in 2015 because of recurring fevers, Addie Stiverson received the very difficult diagnosis of Hepatoblastoma in the autumn of 2015 while visiting family in Colorado. Although her doctors were optimistic that Addie would recover from this Liver Cancer, her body said otherwise as after a Liver Transplant, Addie's cancer spread to her lungs and then her brain. Addie passed away on December 20th of 2016, having lived for only 3 years and 17 days.
A massive Malignant Rhabdoid Tumor was found on 4 month old Kinley Mercer's left kidney in the summer of 2022 and she was diagnosed with Stage 4 Kidney Cancer. Upon undergoing chemotherapy treatment, Kinley went through scans that showed that her cancer had spread very quickly, so much so that her doctors declared that her cancer was no longer curable. Kinley passed away from this very difficult form of pediatric cancer on November 12th of 2022, only 7 1/2 months after her birth.
Andrea Wilson had two very difficult health crises on her hands, one with her younger daughter Phoenix who was diagnosed with Stage 3 High Risk Neuroblastoma when she was 3 years old in 2017, and one with her older daughter Liberty who contracted Septic Pneumonia while Phoenix was in treatment. Phoenix was on the 7th floor of Phoenix Children's Hospital while Liberty was on the 9th floor. Fortunately both girls are surviving and doing well and Andrea and her family are looking onto the possibility of trying to build a Western Style Ranch with horses, so that Pediatric Cancer families can have a place to go to for healing purposes.
The counties of Knox, Laurel, and Whitley, in Southeastern Kentucky have seen 10 DIPG diagnoses since 2024, an extraordinarily high number of cases in such a condensed area. Shay McAlister is an Independent Journalist who has been investigating this issue and will discuss the problems that are related to this most deadly form of Pediatric Brain Cancer, which normally sees 1 or 2 cases in the entire state each year. Shay has written 2 major articles on this issue and will be continuing her goal to find some answers that are needed as to why this is happening.
After experiencing a number of illness when he was 2 years old going into the spring of 2025, Caitlyn and CJ Jennings thought that their beloved son Brooks was experiencing normal illnesses that many toddlers may experience. Unfortunately that was not the case. Brooks was diagnosed with a Fusion Mesenchymal Tumor that was located in his lung and then spread to his Pelvic Bone. Brooks continued to feel well until August of last year when his health went downhill, leading to his passing on October 25th of 2025.
Shaya Rees Frum was 14 years old when her then 11 year old sister Jessie was diagnosed with DIPG on March 3rd of 2011. Jessie passed away from this terrible Pediatric Brain Cancer on January 5th of 2012, but not before laying the groundwork for the Jessie Rees Foundation that has been directed by her father Eric for the past 14 years. I spoke with Erik about Jessie and the Foundation back in April. Shaya has taken on a major role in the Foundation, it is her full time job, and hopefully she will be the person to take on its Leadership Role, when Erik and Shaya decide that the time is right .
Maribeth Ditmars has suffered plenty of heartache and loss for the past 25 years, beginning with the diagnosis of Acute Lymphoblastic Leukemia in 1997 and the subsequent passing of her son Christopher at the age of 14 in 2001. This was followed by the passing of her younger son Jarrod when he was 21 years old from an accident on July 4th of 2015, which left him unconscious for the last 4 days of his life. In between those years, Maribeth successfully battled her own demons with her dependence on alcohol, to the point where she has been able to counsel many people who have had similar problems and she is now very involved in helping others. Maribeth has now been sober for 22 years .
During Alisha Harper's pregnancy, she was told that there was a 60 percent chance that her son would be born with Down Syndrome. That statement turned out to be a correct one as Chase was born in December of 2016 with this illness and by the time Chase was 4 years old, Alisha saw that his Down Syndrome was manageable. One month after feeling as good as possible about how Chase was doing, he developed a body rash which turned out to be a symptom of Acute Lymphoblastic Leukemia. Despite having this 1-2 punch thrown at him, Chase is doing well as he is now 9 years old and living his best life possible.
10 year old Charli Martin hurt her shoulder while competing in the New York State School Wrestling Tournament when she was in 5th grade in 2023. While going for Physical Therapy, Charli noticed a lump on her neck and after taking antibiotics and still in therapy, the pain in her shoulder did not go away. Charli then had this lump biopsied and the result was her diagnosis of High Risk B Cell Acute Lymphoblastic Leukemia. Charli has now completed her 8th grade year and at 13 years of age is back playing sports and living the life of a normal and healthy 13 year old teenager.
Gwen Mysiak worked in the field of Public Broadcasting for 19 years in Buffalo and during that time, her friend's cousin Andrew Pawlak was 13 years old and in 7th grade when he was diagnosed with a form of Pediatric Cancer and passed away 2 years later. Not too much time went by after that before Gwen switched carriers to become the Punt Pediatric Cancer Collaborative's Executive Director in 2012. This Collaborative focuses on 6 major programs to help families deal with a Pediatric Cancer situation, with a special emphasis on their bereavement program.
Sydney Belsher has been through a great deal in her still very young life as she is 12 1/2 years old, which started with stomach issues almost from her birth in the fall of 2013, and then her diagnosis of Infantile Acute Lymphoblastic Leukemia which came when she was 6 months old in April of 2014. Right after her diagnosis Sydney's lifespan was very uncertain as her doctors feared she would have a stroke and may not survive. This did not happen thankfully but Sydney has battled both physical and mental issues over the years . Fortunately Sydney has survived all of her issues and is trying to live her best life possible.
When she was 4 months old on November 14th of 2023, Kalia Arrayan was diagnosed with High Risk B Cell Acute Lymphoblastic Leukemia. This diagnosis came as a complete shock to her parents Heather and Casey who did not see any clear symptoms before a routine checkup showed a lump on her spleen. Kalia went through a very difficult treatment process for the next 8 months before she underwent a Bone Marrow Transplant with her 11 year old brother being her donor. Kalia has been doing much better over the past nearly two years as she approaches her 3rd birthday.
Marissa Metcalf does not remember many details from her treatment during her battle with Acute Lymphoblastic Leukemia which took place in 2010 when she was 3 1/2 years old. What she does know, now that she is 19 years old and looking at possible careers, is that this form of Pediatric Blood cancer has affected her in different ways as she approaches 20 years of age, and wants to help others who have been diagnosed with cancer by becoming an Oncology Nurse, which would be a great accomplishment for her and a good thing for her future patients.
Lily and Sebastian McGrath's 2 1/2 year old son Bryson was first thought to have a Wilms Tumor before his Pediatric Cancer diagnosis was changed to Stage 4 Neuroblastoma in the early days of 2023. Lily and Sebastian had to put up with a number of more than questionable medical decisions during Bryson's fight and also had to endure the final days of Bryson's life who while in Hospice Care, was promised 24 hour round the clock availability should they be needed and when they were needed the most, they were nowhere to be found. Lily also had to watch after Bryson passed away while one of the Hospice nurses attempted to rip off all of Bryson's dressings, instead of treating her son with the kid gloves that he more than deserved.
Cherie Colbom is not only an expert Nutritionist, she has written 35 books, including her Juicing For life which has sold 2 million copies and her current book which became available on April 28th entitled The Truth About Seed Oils. Cherie will talk about how Seed Oils can have negative health effects for consumers and will discuss the link between Seed Oils and Pediatric, Adolescent and Young Adult, and Adult Cancer. Cheire has been on television many times discussing this issue and has also written many articles on this subject.
Brody Bailey is one of possibly two children in the World who have been born with a Congenital Diaphragmatic Hernia and then diagnosed with Neuroblastoma. Lauren and TJ Bailey are Brody's parents and will talk about his journey with the good news being that he is more than 3 years old and is doing as well as possible health wise. The Bailey family has received great support from their Township of Deptford New Jersey community, especially from Rich Nardiello who is the head of the great Pop Pop Custom Cars Non-Profit and a wonderful advocate for the cause of Pediatric Cancer.
Jordan Belous has always had a soft spot for Pediatric Cancer Patients and when she was 16 years old in 2015 she issued a "challenge", much like the Ice Bucket Challenge, when she created a video that went viral by dancing for 14 seconds to the song WHIP/NAE NAE by Rapper Silento to either Dance or Donate. More than 7000 people took up her challenge and donated more than $100,000 to Memorial Sloan Kettering to fight the cause of Pediatric Cancer. That was the birth of her WHIP PEDIATRIC CANCER Non- Profit. Since that time Jordan has personally developed long standing and iron clad friendships with more than 300 Pediatric Cancer patients and has done extraordinary work for these kids, their families and the cause of Pediatric Cancer.
Matt Giegerich has been the Chief Executive Officer of The Matthew Larson Foundation for Pediatric Brain Tumors for the past 18 months. This foundation, also known as the Iron Matt Foundation, was started by young Matt's parents Kelly and Greg after Matt passed away from the Pediatric Brain Cancer Choroid Plexus Carcinoma in 2007, when he was 7 years old. This Foundation focuses on helping families with financial assistance as well as focusing on raising money to award Grants to researchers who are trying to help solve the many issues that are involved with Pediatric Brain Cancer. This Foundation has now awarded over 100 Grants to researchers in the United States and Canada.
Mason Fox was 10 years old when he was diagnosed with Acute Lymphoblastic Leukemia in April of 2023. Mason then went through treatment and was doing very well with his recovery before a Fungal infection got the best of him quickly in February of 2024, and led to his surprising and unfortunate passing, not even 10 full months past his original diagnosis. His parents Leslie and Michael detail the amazing persona that Mason had as he was most concerned with helping others even during treatment for this blood cancer, as he bought toys with his own money and would walk down the halls at St. Joseph's Children's Hospital with these toys in a wagon, hooked up to his IV pole, and would deliver them to the other Pediatric Cancer patients on his floor.
Liam Bascle was only able to live 7 1/2 years because of an Ependymoma Brain Tumor that he was diagnosed with in April of 2015. His persona resonated with many people despite his tender age and many tributes came his way after his very unfortunate passing in November of 2021, after fighting with this Brain Tumor for 6 1/2 years . To honor the memory of their beloved son his father Nick, with support from his mom Sarah, started the Links Fore Liam Golf Tournament in New Hampshire to help raise money for the cause of Ependymoma and Pediatric Cancer. This tournament is now held in New Hampshire, Colorado, and Louisiana, with at least 4 more locations on the horizon.
A chance phone call between Amy Davis and a friend who was taking her daughter to get checked for allergies, led Amy to take her then 2 year and 10 month old daughter Phoebe to see her Pediatrician, where shortly thereafter she was diagnosed with Acute Lymphoblastic Leukemia in June of 2010. Phoebe was in Boston Children's Hospital for 8 weeks and completed her treatment as an outpatient for the next 26 months, until she was 5 years old. From that time on Phoebe has been cancer free with no long term side effects, and is feeling great as an 18 year old. It is always nice to talk about successful Pediatric Cancer journey's on this podcast.
After being diagnosed with Acute Myeloid Leukemia when he was 3 years old in 2012, Cullen Cisneros was able to live the next 8 years of his life free of cancer until 2020 when leg pain during a baseball game led to a diagnosis of Ewings Sarcoma. Cullen's parents Amy and Matt will talk about their beloved son, who fought from 2020 until May of 2025 to try and do everything he could to stay alive, only to pass away from this Bone Cancer when he was 15 years old.
Amelia Mijach's then 2 year old son Hayes was diagnosed with High Risk Acute Lymphoblastic Leukemia when he was 2 years old in August of 2024 and the reason for his high risk status was because of his extraordinarily high white blood cell count at diagnosis. Hayes then contacted a serious fungal infection during his consolidation phase of his treatment and during the next year and a half of treatment he needed to fight off a battle of Neutropenic Fever and he experienced other battles as well. Finally in December of 2025 Hayes turned the corner and is doing much better physically and is as active as possible.
Erik Rees became an amazing Cancer Dad and Pediatric Cancer advocate during and after his daughter Jessie battled with and passed away from DIPG at the age of 12 in January of 2012. Erik talks about his beloved daughter and then details the Jessie Rees Foundation which was started because of Jessie's wish to help Pediatric Cancer patients who were at Children's Hospital of Orange County in California. Jessie started her Jessie's Joy Jars while battling her Pediatric Brain Cancer, and nearly 600,000 patients have received these Joy Jars in the United States and across the globe since Jessie was able to donate 3000 of these to patients before her passing. This foundation now raises 5 1/2 million dollars each year.
Ben Shroyers then 2 year old daughter Hannah was diagnosed with Stage 4 Neuroblastoma in 2018, then was diagnosed with Histiocytosis which ended up in her brain before she became cancer free in 2021. Now 10 years old and in 3rd grade, Hannah is doing well health wise. Ben started the Casting For The Kids Foundation in 2020 during the pandemic as a way to help families both emotionally and financially through a fishing tournament which has now raised $460,000 over the past 6 years . Ben is an amazing advocate for families in the Sarasota, Florida area and what he has accomplished through his foundation for many individuals and families in the Pediatric Cancer world is truly outstanding.
When Kelly DiGiammo's son Brayden was 13 years old in early 2024 he developed troubling health symptoms, including going from being one of the fastest runners in the school to losing his breath and running very slowly, experiencing continuing colds, and then having a bout with the flu. Brayden was diagnosed late in February of that year with Acute Myeloid Leukemia. Brayden successfully completed a Stem Cell Transplant and has been in remission since May of 2024. Kelly and Brayden will talk about his journey which has been a successful one and Kelly will also talk about her experiences getting involved in advocacy work for the cause of Pediatric Cancer.
The bill AB 703 which was signed into law by California Governor Gavin Newsom and which I talked about with Sahil Metha on my podcast a few weeks ago is just one of the important accomplishments that was led by the Society Of Emerging Leaders, which was co founded by Mary Kemp in 2022 and is under the direction of Kaitlyn Lee. This law now gives the voters in California the option to check off a box on their state tax form if they would like to donate to the cause of Pediatric Cancer. Mary and Kaitlyn will talk about many of the other programs that The Society For Emerging Leaders have started in California to benefit the cause of Pediatric Cancer.
Jacob Orlick is now a senior in High School and making plans to attend Penn State University in the fall. Jacob was 11 when he was diagnosed with the Bone Cancer Ewings Sarcoma, had his right leg amputated, but has been able to live a fulfilling life which includes his work as a Motivational Speaker and his Podcast entitled Motivational Mic. Jacob is hoping that his career path leads him into becoming a Professional Sports Broadcaster.
Dr. Katerina Levy decided to write her book THE HEALING Garden while she was a resident at the Broward Medical Health Center in South Florida. This book was based on the Healing Garden that she saw while at that Medical Center and is full of strategies that work for kids who are trying to cope with being diagnosed with any form of Pediatric Cancer. Dr. Levy is still in the very early stages of her career as a Pediatric Psychologist.
Being treated terribly by her swimming coach and eventually belittled and made fun of by her teammates, Meghan Macantee was diagnosed with Acute Myeloid Leukemia in the fall of 2023, during her sophomore year at SUNY Potsdam where she was a member of the swimming team. Before her diagnosis, Meghan went to the emergency room 11 times where she was also treated poorly. In short, no one believed this wonderful young woman The fact that she was diagnosed with such a difficult form of Pediatric Cancer says it all. Meghan is now doing well health wise and giving back to others with her non-profit MEGHANSMISSIONINC. Meghan never received an apology from any of the people who so terribly wronged her. SHAME ON THEM.
Payton Alexander was living a healthy and normal life for a 14 year old until late in 2017 when she began experiencing symptoms that needed to be checked out. These symptoms led to her diagnosis of Ewings Sarcoma in January of 2018. Payton continued to try and live as good of a life as possible as she joined the Make A Wish and Little Warrior Foundations to try and help other patients suffering from Pediatric Cancer. Payton fought for 3 1/2 years with this Bone Cancer before her passing in November of 2021 when she was 19. Her mom Kim, who talked beautifully about her beloved daughter during our podcast, has been involved in the cause of Pediatric Cancer since Kim's passing, with her Payton Alexander Foundation.
Tamy Bell's son Griffin was born 3 months prematurely in June of 2017 and 16 months later was diagnosed with Neuroblastoma in September of 2018. Griffin relapsed on two occasions after that but then in April of 2023, had a 3rd relapse that was more severe as his cancer had spread to his orbital bone. This relapse took away any realistic hope of further treatment that would help Griffin, and he passed away on March 18th of 2024, 3 months before his 7th birthday,
Sahil Mehta's older brother Ronil wanted to donate his brain to Stanford University after his passing from DIPG in 2018 in the hope that it would help another DIPG Victim in the future. Sahil took this request as his personal responsibility and then got so involved in the cause of Pediatric Cancer that he eventually worked with California Assemblyman Alex Lee to form the bill AB703, that would give the California State Taxpayers the option on their tax forms to check a box that would allow them to donate to the cause of Pediatric Cancer. This bill was fully formed and ready by July of 2025 to have Governor Gavin Newsom sign it into law. California is now only the 8th state in the country to have this provision on their tax form and Sahil is hoping that many other states will join in this effort to bring much more money into the cause of Pediatric Cancer.
Carrigan Nelson was diagnosed with Osteosarcoma in March of 2019 and fought for the next 69 months with this form of Pediatric Bone Cancer until her passing on Christmas Day in 2025 when she was 24 years old. Carrigan was a truly Iconic young woman who did so much for the cause of Pediatric and Adolescent Cancer and was beloved by everyone that knew her. A very well accomplished Singer, Dancer, and Artist, she looked at life with Joy and nothing mattered to her more than trying to inspire other young patients with her singing and reaching out in compassion to help others in any way possible. Her mom Tammy, her Aunt Bonnie, and her greatest friends Deaven Pierpoint, Hannah Nasser, and Madison Quinn will talk about their beloved daughter, niece, and friend in this Tribute To Carrigan.
Tony Garcia will talk about his early in life Pediatric Cancer battle which began in 1973 when he was diagnosed with Leukemia when he was 2 1/2 years old. Tony's treatment finally ended nearly 10 years later in 1983 and since that time he has been doing as well as possible for the past 43 years, as a long term Pediatric Cancer survivor. Now 55 years old, Tony just published his first book (memoir) at the end of January called MY CHILDHOOD CUT SHORT. SURVIVING LEUKEMIA AND FINDING PURPOSE BEOND PAIN. Tony also is involved in supporting Pediatric Cancer patients through fundraising, volunteering, and advocacy work.
Sydney Leandro was 5 years old on Easter Sunday of 2020 when she was diagnosed with Acute Lymphoblastic Leukemia. Now at age 11, Sydney is feeling and doing well and is able to live a good life. In 2025 her brother Jack, who is now 9 years old, decided to start a non-profit called PUCKS FOR BUCKS in which he shot approximately 200 pucks a day from his driveway into a hockey goal and raised $1.00 for each puck he shot, which he donated in Sydney's honor and to help other Pediatric Cancer Patients. He donated this money to the A Wish Come True Non- Profit which had treated the Leandro family to a trip to San Diego in 2023. Jack will continue his non profit after his current hockey season ends and will begin from where he left off last summer in which he had totaled 10,027 pucks shot.
Kendel Davy is a Founding Member of the Riley Rocks Memorial Foundation and Meghan Fessenden is the Director of Social Media and Marketing for the Foundation and is Riley's sister. Together they will talk about Riley who was diagnosed with Esthesioneuroblastoma which is a Pediatric Cancer of the Nasal Cavity when she 6 years old in 2013, and battled for 3 years before her passing on July 20th of 2016 when she was 9 years old. They will also talk about their Foundation which was started by Riley's parents Kamie and Todd.
Tara Daniels is now 33 years old , married, working at a job that she enjoys , and living as good of a life as she can. Back in 2009 when Tara was 16 years old this was not the case as she was diagnosed with Acute Lymphoblastic Leukemia . Tara relapsed twice, with the last relapse coming in 2016. Tara then received a Bone Marrow transplant and since that time period, she has been cancer free. Tara will talk about all that she has been through, including survivorship on today's podcast.
Gabriella and Nicholas are 22 years old, and about to graduate from Purdue University and Indiana University respectively. This fall they will enter Medical School and will likely pursue careers in the medical field that will concentrate on Pediatric Cancer. Their cousin Maddox is now 14 years and well past his battle with Acute Lymphoblastic Leukemia but Maddox's sister Maia, who was diagnosed with Ewings Sarcoma in 2022 when she was 6 years old, passed away from this Bone Cancer on November 2nd of 2025. Gabriella and Nicholas will talk about what Maia went through during her cancer battle and will also talk about their amazing Strides For Sarcoma Non-Profit which they started after Maia relapsed, which shows both their dedication to Maia and their dedication to doing what they can to help eradicate the disease that Maia was forced to go through.
After their son Christopher passed away in 1972 from Rhabdomyosarcoma, Charles and Irma Millard decided to start a Charitable Gift Fund that would help Pediatric Cancer Patients and their families. This organization was named Four Diamonds and Suzanne Graney, who has been its Executive Director for the past 15 years, will talk about this amazing organization which pays all expenses for each child that is treated at Penn State Health Golisano Children's Hospital that are not covered by insurance. Four Diamonds is part of Penn State University and has been partnering with their Dance Marathon known as Thon which is the largest Student Run Philanthropy in the World. All of the proceeds go to Four Diamonds to help Penn State Health Golisano Children's Hospital and Penn State College of Medicine to fight Pediatric Cancer.
Maithili Shah was told by one surgeon that her then 6 month old Agastya who was diagnosed with Medulloblastoma in July of 2023, would most likely not survive 4 more months. Thankfully, Matihili and her husband made a change in surgeon's, Agastya's Brain Tumor was totally resected, and now, over 2 1/2 years later , Agastya is doing well physically as he continues to make progress from this Pediatric Brain Cancer.
4 year old Ava Blazis woke up on the morning of March 11th 2023 with a very unusual pain in her abdomen which continued to get worse as the day wore on. Her mother Angela brought her to UMass Memorial Medical Center and 3 days later on March 14th, she was diagnosed with Acute Lymphoblastic Leukemia. Angela and Ava then spent the next 65 days at Boston Children's Hospital while Ava was undergoing treatment. Meanwhile Angela's sister Johanna Annuziata got busy with helping to look after Ava's brother Michael, and also helping to start Team Ava, an unofficial Non-Profit, which has already raised over $300,000 to help in the cause of Pediatric Cancer. Ava is now 7 years old and is doing well physically as she has been in remission since May of 2025.
Alexandria Rodts's son Brayton got the stomach flu in February of 2023 which had already affected his family in January. Brayton's symptoms continued well past the normal time for a stomach flu to be an issue, and this was not helped by the fact that all the doctors he went to basically came to the same conclusion that by taking Zofran, he would feel better. 6 months later, in August of that year his diagnosis of ATRT which was so shocking, was finally confirmed at Rady's Children's Hospital in San Diego, thanks to his pediatrician who pushed much harder than others to get Brayton's true issue diagnosed correctly. He was 19 months old at the time of his diagnosis. Brayton is feeling well and doing as well as possible as 2026 is underway.
Persistent colds and a chronic cough were followed by not being able to walk and being constantly tired for Marie Gulliver's 2 year old son Ezra in 2022. These symptoms were finally diagnosed as High Risk Acute Myeloid Leukemia, which was complicated by a genetic mutation and the always difficult Graft vs, Host Disease after Ezra received a successful Bone Marrow Transplant in September of 2022. Ezra has been cancer free for more than 3 years and has ony a 5 percent chance of a relapse which is great news for him and his family.
When Aaira Khan was in 5th grade in 2021 she and her classmates at their school in Sydney Australia received a letter from a Pediatric Cancer patient which talked about the Great Cycle Challenge. Aaira quickly decided to ride in this event to raise money for this patient and for the cause of Pediatric Cancer. Aaira has now ridden in this event each year since and in the fall of last year, started her own CAN CAMPAIGN fundraiser. This fundraiser focuses on people picking up empty cans, bringing them to get recycled, and taking the proceeds that they receive from each can and donating all of these proceeds for research, to help join in the fight for these kids who need as much help as possible as they fight their own cancer battels. This campaign was just started 3 months ago and has already raised $2600.
With all types of troubling symptoms which began at the end of 2024, Sara Bailey was told that these symptoms in her then 4 year old daughter Brynlee indicated that she had Strep Throat, after the doctors that she was seeing basically dismissed her symptoms and how she was feeling. This totally unnecessary DELAYED DIAGNOSIS took approximately 4 months until her symptoms were actually examined, thanks to the insistence of Sara that Brynlee needed the proper testing which she finally received. Brynlee is scheduled later this week to Ring The Bell indicating that her treatment for her Pediatric Brain Cancer Medulloblastoma has ended, and hopefully will go into remission with a much better future then she was allowed to have when she was 4 years old and diagnosed on April 9th of 2025.
Among Katie Taylor's successes as a Certified Child Life Specialist over the past 15 years have been focusing on the parents of the children that are undergoing treatment for Pediatric Cancer, and empowering these parents to help get their children and adolescents ready for upcoming doctor's appointments, which can be a tricky proposition. Katie also established a Child Life Services program at a Newborn Intensive Care Unit with an astounding 80 beds to help these critically ill newborns. These accomplishments also go along with her being an Author, Public Speaker, and Podcast Host. Katie is an extremely busy and totally dedicated professional .
When Tony Suttles heard about 9 year old Haley Chandler being diagnosed with a form of Pediatric Cancer in 2020, he decided that he needed to do something to help this girl and their family. His solution was to start a Dirt Track Car Race and decided to call it FIGHT FOR A KID. His first race in 2024 attracted 80 cars on a track that normally had 30 cars race each weekend. By 2025, 106 cars entered and over $12,000 was raised in honor of kids like Haley who were going through their individual cancer battles. Tony and James Cumby, the father of 12 year old Brailynn Cumby who I spoke with on my Podcast on Christmas Day about her Ewings Sarcoma battle, will talk about this race and the expansion plans they have for it beginning in September when their next race is scheduled.
The only symptom that 14 year old Adie Alonzo was showing beginning in the spring of 2024 was an enlarged lymph node on her left side that had not impacted Adie's health in any way. It was not until 7 months later that this swollen lymph node was diagnosed as Hodgkins Lymphoma. After undergoing difficult treatment at Kaiser Hospital in Fontana California, Adie achieved remission on May 29th of 2025 and is doing well as 2026 begins. Adie is now 16 years old.
Ahmad Butler described the headache that he was dealing with as "Pain On The Brain" in February of 2015, a headache that was almost immediately checked out, and one day later Ahmad was undergoing Emergency Brain Surgery at St. Christoper's Hospital in Philadelphia. This surgery revealed that Ahmad was suffering from the Pediatric Brain Cancer Ependymoma. Ahmad lived for only 9 months after his diagnosis, passing away at 6 1/2 years old in November of 2015, and his Grandmother Latanya Morrison started the Ahmad Butler Foundation in 2020, a Foundation that she has been running with unyielding focus and passion.
Dr. Cristina Pozo- Kaderman is the Director of the Young Adult Program at the Dana Farber Cancer Institute and just published her book COPING WITH CANCER IN EARLY ADULTHOOD, a book that talks about the many issues that young adults, beginning at age 19 have to go through. These issues have a wide variety of problems attached to them and Cristina writes about the many solutions for which this group of cancer fighters can choose from to help them live their best lives possible.
When a "small pimple" that was on 11 year old Brailynn Cumby's back that seemed to be a simple cyst turned into Ewing's Sarcoma in October of 2024, her parents Raquel and James, not to mention Brailynn, were shocked. Brailynn went through her treatment which ended on September 9th of 2025 when she was able to Ring The Bell at Texas Children's Hospital and while in treatment, Brailynn managed to write a book entitled PETALS OF HOPE and also managed to design a Chemo Shirt which hopefully will be put to good use by other pediatric cancer patients.
Caitlin White's son Grant was 2 years old when he complained of pain from his thumb in November of 2022. This pain was not taken seriously enough by his doctors, one of whom looked at Grant while he was lying on the floor and gasping for breath in the hospital waiting room and said that his "shift was almost over" and he would order him a prescription, which had been the supposed solution heard too many time before by Caitlin. Caitlin then demanded a change in doctors, receiving a new female doctor, and this led to Grant finally being diagnosed properly for Leukemia, and began his treatment almost immediately.
Chad Gordon radiated positivity when talking about his daughter Adley's successful battle with B Cell Acute Lymphoblastic Leukemia which began just before her 2nd birthday in February of 2022, and ended 800 days later when she was able to Ring the Bell at Penn State's Hersey Children's Hospital. Chad talks about what Adley went through, and also how the THON event which is a very well known Dance Marathon at Penn State, and the Four Diamonds Childhood Cancer Organization did so much to help Adley and the Gordon Family.
I am always amazed and humbled when any parent can come on to my podcast to talk about the passing of their child from any form of pediatric cancer. This feeling was no more striking than in my conversation with Tim Finkel, who spoke so eloquently about losing his and Angela's youngest son Ryder just 54 days ago to DIPG at the age of 9. This Pediatric Brain cancer still does not have any type of good news as far as a survival rate is concerned, which is the same story that DIPG parents and families have been hearing for over 60 years.
Even though it made perfect sense that 2 year old Waylynn McCullough was experiencing the same cold like symptoms that her dad Kevin and her mom Logan had already been through, Waylynn was not as fortunate to say the least, as what she was experiencing was her lead up to her High Risk B Cell Acute Lymphoblastic Leukemia diagnosis which was given to her in January of 2024. Waylynn is now 4 1/2 years old and has been through a very difficult initial treatment plan which was followed by a very difficult Delayed Intensification Treatment plan. Waylynn is now feeling well and thankfully is leading the life for the most part as a very healthy 4 1/2 year old girl.
Grace Eline was taught values by her mom Aubrey and her father Dan at a very early age, that giving to others was far more important than wanting for yourself. Well before she was diagnosed with the Germ Cell Cancer Germinoma which took place when Grace was 9 years old, Grace had decided that rather than accepting birthday gifts, she wanted people to donate to the cause of Pediatric Cancer. Now 16 years and completely healthy, Grace started the WITH GRACE INITIATIVE as a non-profit to help other Pediatric Cancer Warriors and their families as they go through their cancer battles. This outstanding young woman attended the State of the Union when she was 10 years old as a Pediatric Cancer Representative, and has continued her work to help others, practicing the lessons that she was taught by her parents over 10 years ago.
Nya Chambless is now 16 years old, has been an actor since she was 4 years old, and is the now the Award Winning 16 year old Director of the Short Film MY GUARDIAN ANGEL. Nya and her father Jerry, who is the film's producer, will talk about this film which details the true story of the friendship between Nya and Teeja Johnson, who met in pre kindergarten, became best friends , and then Teeja passed away from Neuroblastoma just 5 months later. This film was introduced to Film Festivals across the country and beyond in April of 2025, has won multiple awards, and features topics such as Inclusion, Acceptance, Love, Friendship , the scrooge of Bullying, and awareness of Pediatric Cancer. If you would like to see information on this film click on this link. http://www.griefdialogues.com/my-guardian-angel/
When Abby Fish, who was still under the age of 2 in the summer of 2025 was diagnosed with the Pediatric Brain Cancer Choroid Plexus Carcinoma, her mom Amelia and her dad Joel were told how rare and difficult this cancer was. When they then found out that Abby also had the genetic condition Li Fraumeni to go along with her Brain cancer, they were told that the chances of her surviving until she was at least 5 years old were less than 12 percent. After hearing that, they found the Burzynski Clinic in Houston Texas, and that Dr. Burzynski had treated a young woman named Kaityln who is now 25 years old, and had suffered from both the same cancer and same genetic condition that Abby has. Abby is now following the same treatment path that Kaitlyn did.
Karla Gess's daughter Kadence had been limping on her right leg for several weeks, and each time Karla or Kadence's father Jarret would take her to the emergency room, her limping would be dismissed and the only thing that she was told was to take Motrin. Finally a Pediatric Nurse saw Kadence, thought her color seemed off and ordered labs, which led to her diagnosis of Stage 4 Neuroblastoma. Kadence is now 5 years old and has been battling this form of Pediatric Cancer for 17 months with at least one year of treatment on the horizon.
After noticing that their 20 month old son Jacob was wobbling while walking and had fallen to the ground in February of 2024 , Jocelyn Espinoza and Samuel Steward, took their son first to a doctor in Tijuana Mexico, and shortly thereafter to Rady's Children's Hospital in San Diego where he was diagnosed with the Pediatric Brain Cancer ATRT. It has been over a year and a half since Jacob's diagnosis, and he is currently doing very well and living the life of a very active 3 1/2 year old boy.
When Rylee Clark began to complain about troublesome headaches in 2020 when she was 12 years old, the original thought was that these were Migraines. That did not turn out to be the case however, as Rylee was diagnosed with Pineoblastoma, a fast growing cancerous brain tumor. Rylee's parents Michelle and Mike and her twin sister Reese will talk about this diagnosis, which led to the far too short life of their beloved daughter and sister.
Because he was Developmentally Delayed at birth, Aliyah Vida was not that surprised when her son Joshua, who was affectionately known as Goose, slipped while walking to the bathroom and hit is eyebrow, causing a small bump. Unfortunately this bump continued to grow, as did his feeling lethargic, and then not eating or drinking. Goose was then diagnosed with Stage 4 Neuroblastoma in April of 2022, and this form of Pediatric Cancer led to his passing in April of 2024, before he was to turn 4 years of age.
Just a few days after complaining of a headache and vomiting on his way to school the next day in August of 2017, Gunner Smith, who was a 4th grade student was having emergency brain surgery at the Vanderbilt University Medical Center, after being diagnosed with a High Grade Multi Form Glioma. This operation was so serious that there was a question as to whether Gunner would even be able to wake up from this surgery. Gunner's parents Brittany and Brandon will talk about their son who showed so much bravery while he fought his disease and uttered these words after his diagnosis. "We Got This." Gunner passed away from this Pediatric Brain Cancer on May 28th of 2021.
Being put in a garbage can by a fellow classmate while in Junior High School, and having a teacher laugh at her as she was being forced to clean up the spill of a lunchroom tray which she did not cause, are just a few of the things that Mariah Forster Olson talks about in her recently published book HOPE OVER DESPAIR which details her life of the physical and mental after effects of her Neuroblastoma battle that she has lived with since her diagnosis of this form of Pediatric Cancer when she was a year old in June of 1980. Now at the age of 46, Mariah has proven without a doubt that it is possible to live a meaningful and successful life, despite being forced to endure the many unfortunate details that she describes so eloquently in her book.
Kerri Steele's husband Will ran 13 miles each day, went home to help get his young children ready for the day afterwards, and then put in a full day of work. Needless to say, it was a total shock to Kerri and Will when he was diagnosed with a rare form of cancer that was determined to be terminal upon his diagnosis in February of 2010, and which led to his passing on Christmas Eve of 2012. Kerri will talk about Will, and about the difficult years ahead for her and their children who were 2,4, and 6 when their father got sick.
Jannell and Keith Royer's daughter McKenna was experiencing headaches before her Diffuse Midline Glioma diagnosis in August of 2023. This Pediatric Brain Cancer behaves in a similar manner to DIPG, leaving little room for a lifespan which is normally expected to be 9-12 months. McKenna did not even make it that far, passing away on February 26th of 2024, 6 months after being diagnosed. Jannell and Keith will talk about how McKenna felt surprisingly well during almost all of her battle, until 8 days before her passing when she suddenly went downhill health wise. Jannell and Keith will also about their Brave Like McKenna Foundation and their advocacy work for the cause of Pediatric Cancer.
BobbiJo Pansier met Andy Standish , the founder of the Standish Foundation For Children, at an event and just a few weeks later Bobbi Jo joined this World Wide Foundation and is now its Global Programs Manager. This Foundation works with low income and middle income countries to help children who are suffering from diseases such as Pediatric Cancer and other maladies with many aspects of healthcare. This foundation is 15 years old and is alive in 70 countries around the world, and has served 1 million children. Bobbi Jo is a Child Life Specialist and uses her background in psychosocial issues to help these kids and their families navigate what can be a very difficult path in the Healthcare world.
Sam Taylor's daughter Ellie has been free from her treatment for Rhadomyosarcoma since April of 2023. 6 months after that, Sam started her DEEP C PODCAST which focuses on parents and how they are able to deal with their the children's Pediatric Cancer battles. This podcast is so well known that Sam hears each day from at least one parent who has listened to her podcast or knows about it, and Sam develops great relationships with all of her guests. Sam also spends a great deal of time on her Advocacy work for the cause of Pediatric Cancer, including her work with the Pediatric Oncology Group of Ontario known as POGO.
If you would like to find clips of interviews that Sam has had with her guests then please go to her DEEP C PODCAST Instagram page. Interested parents would be able to see Sam and her guests interact and that is always a good thing.
Ansley Cochran's parents found a lump on their 2 year old daughter's neck in 1999, and this lump was the forerunner of her diagnosis of Neuroblastoma. Ansley was able to live for 19 more years , a time period that included very difficult treatment which was interrupted by a 4 1/2 year period of remission. Ansley's health began to decline in February of 2017 and her passing took place on May 22nd of 2018 when Ansley was 21 years old. Ansley's mom Donna will talk about both Ansley and the Ansley Foundation on today's podcast.
Dr. Danielle Cameron knew that she was interested in medicine when she was a girl growing into her teenage and adolescent years while watching her father who had a career as a Cardiac Surgeon. Danielle talks about that on today's podcast as well as her many interests in the field of Pediatric Oncology, especially when it concerns solid tumors. Danielle also lends her voice as a member of a number of National committees for Organizations that are concerned with a wide variety of Pediatric Cancer issues.
From her early years , HELPING was a word that described what Dr. Kate Lund enjoyed doing for others, and this led to her career as a Clinical Psychologist and her roles in the Pediatric Cancer World. One of these roles was as a volunteer for the Children's Brain Tumor Foundation which took place for nearly 25 years and her most recent and current role has been training her dog Wally to become a Therapy Dog who visits Pediatric Cancer patients and brings them comfort at Seattle Children's Hospital.
After surviving her childhood fight with Acute Lymphoblastic Leukemia, Claire Galvin has gone on to have an outstanding academic career, which has included holding a double major in Biology and Psychology which led to her receiving an Honors Bachelor Degree from the University of Toronto, a Master of Science Degree in Experimental Medicine from the University of British Columbia, and is now pursuing her Doctorate in Clinical Psychology from Concordia University in Montreal. Clair is currently working on her Dissertation which involves the study of Pediatric Cancer survivors and how they have transitioned into adulthood. Claire's dissertation is called the CHILDHOOD CANCER IDENTITY PROJECT. If you are interested in participating in this project then please email Claire at cchip.research@gmail.com
After being diagnosed with Osteosarcoma when she was 10 years old in 2012 Bailey Moody decided that despite what some were saying, her budding athletic career was not over. Since that time, Bailey has been a member of the Women's Wheelchair Basketball National Team since 2018 as a 16 year old, winning World Championships in 2019 and 2023, a two time Paralympian, winning a Bronze Medal in Tokyo in 2021 and a Silver Medal in Paris in 2024, winning 5 National Collegiate Championships from 2021 to 2015 at the University of Alabama, Winning the Finals MVP award after her 30 point effort in the final game of 2025, and being named an Academic All American from 2021 through 2025.
Alex Lynch was diagnosed with Acute Lymphoblastic Leukemia , which came with 2 very rare genetic markers which only 2 percent of ALL kids have had to deal with. Alex's diagnosis came in May of this year and he is now in his consolidation stage. Alex and his mom Yuliya will talk about what Alex has been through and what his treatment future might hold. They will also talk about Alex's 6 sibling's who range in age from 2 months to 14 years . If you would like to see how Alex is doing and hopefully send him a message of encouragement, please contact him at https://www.facebook.com/groups/alexlynch/
Losing one child is terrible under any circumstances but losing 2 children, to different tragedies is more than anyone should ever be burdened with. Adrienne Bender will talk about the loss of her 15 year old daughter Mackenzie who was diagnosed with Acute Myeloid Leukemia after being diagnosed with this Pediatric Blood cancer when she was 8 years old in 2011, was in remission for 5 years, then relapsed and passed away in 2018. Adrienne will also talk about her son Kyler, who developed substance abuse problems beginning when he was 12 years old, fought his demons, and was on his way to what was thought to be a complete recovery before he got into a fight, took fentanyl, and passed away in 2023
After experiencing stomach pains and fevers in the spring of 2023, Jordan Vanstee's then 2 year old son Kian was diagnosed with B Cell Acute Lymphoblastic Leukemia. Kian went through very difficult treatment at McMaster's Children's Hospital in Canada , but with the help of his Disney Hero Mickey Mouse and the Make a Wish Foundation, Kian is now in remission and is living his best life possible.
Kailyn Thelen has health issues of her own, which do not include any type of cancer, and still is able to run her own non-profit which concentrates on making blankets for children with pediatric cancer and other diseases. Kailyn met Ali Herbert when she was just 2 months away from passing away from her battle with Very High Risk Acute Lymphoblastic Leukemia, which happened on November 29th of 2020, the same day as her mom Heather's birthday. Kailyn will talk about Ali and about what she does to help others, as she is dealing with her own health issues.
Nici and John Robinson live in England and lost their son Charlie to a Grade 3 Ependymoma in 2021, after he was diagnosed with this Brain Tumor when he was 2 years old in June of 2018. Nici and John will talk about their beloved son and will also discuss the Respite Homes that they have made available for families who are going through a Pediatric Cancer diagnosis with one of their children. The Robinson's have set these Respite Homes up through their Thumbs Up For Charlie Foundation.
What was thought to be a stomach ailment for Meryl Summers 1st grade daughter Adelia became much more than that in February of 2023 when she was diagnosed with the Pediatric Brain Cancer Diffuse Midline Glioma. Adelia was called the Wonder Girl for so many reasons during her 15 month battle with this disease which very sadly ended with her passing on May 30th of 2024. Since that time, Meryl has become a fierce advocate for the cause of Pediatric Brain Cancer and has testified in the Massachusetts State House for a bill which recognizes the cause of Pediatric Cancer be passed and signed into law as soon as possible.
After recovering from her battle with Acute Lymphoblastic Leukemia in the late 1990's Shannon Hartey had a number of late effects that bothered her until 2020. By that time Shannon was in her early 30's and these late effects got so bad, that Shannon was unable to know from day to day whether the intense pain level that she was receiving in her head for a variety of reasons combined with other cognitive issues that can happen to her at any time , will allow her to have even a normal day. The alternative, which happens regularly, takes her to a health level that is so difficult, it can make her life totally miserable on many levels. What Shannon has been diagnosed with, all because of her treatment for ALL which she received after this form of Pediatric Blood Cancer was discovered when she was 6 years old in 1994, is known as SMART SYNDROME. These late effects are almost totally unheard of, and have been very difficult for some of the best oncologists and doctors to have an answer for.
After Megan Bugg was diagnosed with Stage 4 Alveolar Rhabdomyosarcoma in late 2014, she underwent a very difficult treatment protocol which included 150 weeks of toxic Chemotherapy , 200 Radiation treatments, 5 trips to the ICU, and 8 surgeries. Even so, Megan fought her disease every day and became an amazing and well known advocate for the cause of Pediatric Cancer before her passing on March 9th of 2022, 7 years and 2 months after her diagnosis.
Juno Wollf was born on October 11th of 2022 and was doing well until James noticed a lump under his right armpit. As happens too often, the doctors who looked at Juno did not figure out that this lump was an indication of a Malignant Rhabdoid Tumor, which was finally diagnosed on December 17th of 2022. Just 47 days after Juno's diagnosis on February of 2023, he passed away from this form of Pediatric Cancer, which is diagnosed in 20-25 kids each year. Juno only lived for a total of 114 days.
Bonnie Corcoran will talk about her beloved daughter Brenna who was diagnosed with DIPG, just 8 months after Bonnie and her husband Robert had taken custody of her, then adopted her when she was 3 1/2 years old. Brenna was born with a Cocaine addiction thanks to a family member and was welcomed by Brenna, her husband Robert, and their 5 other children, all of whom were at least 10 years older then she was. Brenna fought her DIPG as much as she could, before passing away on September 6th of 2022.
Keith Desserich-will talk about the budget cuts from the National Insititute of Health, a huge cut from the National Cancer Institute which I just found out about and I mentioned in my outro, and other monetary losses that will have a negative affect for Pediatric Cancer patients and their families.
Jonathan Cottor and his family were living in England when his son Ryan was diagnosed with Spinal Muscular Atrophy when he was 9 months old in 2001. Ryan was not expected to live past his 2nd birthday but lived 15 years longer than expected, passing away in December of 2018. While in England , Jonathan and his wife Holly saw a Respite Home that was common in England but was unheard of in the United States. Jonathan moved his family to his original roots in Phoenix Arizona in 2003, where he and Holly created the Ryan house, which was similar to the home that they saw and that Ryan lived in on occasion in London. After Ryan's passing, Jonathan has dedicated his life to coming up with programs that would lead to the building of these Palliative Care Respite homes across the United States and hopes to have 50 programs completed and 50 houses built, one in each state within 5 years.
Being a Certified Child Life Specialist is one of the most important careers that anyone who has a passion for those that are going through a Pediatric Cancer experience can aspire to. Shani Thornton is a prototype for how important this role is and she will talk about the many things that she is involved with on a daily basis as a Child Life Specialist that helps so many people deal with the psychosocial part of dealing with a disease that no one wants or deserves.
Debi Mitchell's son Austin was diagnosed with Stage 3 Acute T Cell Lymphoblastic Non Hodgkins Lymphoma in 2021 when he was 12 years old, under the assumption that his issue before this diagnosis had to do with Asthma. Today, Austin is doing very well and is trying to establish himself as an actor. While spending her time during Austin's treatment at a Northern California Hospital which would become affectionately known as the "Kaiser Resort", Debi met other mom's who were with their children and were being treated for different forms of Pediatric Cancer. During this time in the "Kaiser Resort" these moms coalesced to form the MAMA BEARS FIGHTING CHILDHOOD CANCER Non-Profit, a Non-Profit which now has established Roots in a number of Northern California Hospitals.
After their 21 month old daughter Lily was experiencing stomach pains in April of 2024, Nicky and Dan Rankin took her to an Emergency Room and she was then admitted to Children's Hospital at the Anschulz campus in Aurora, Colorado. Shortly after that, Lily was diagnosed with High Risk Neuroblastoma. 16 months later as we enter August of 2025, Lily is doing as well as possible . Dan will discuss what Lily has been through and the Half Triathlon that he has been training for to raise money because of the great treatment that Lily has received at Children's Hospital.
Amy Dixon took her then 9 year old son Ben to his pediatrician and many specialists early in 2019 to find out what was the cause of the leg pain that had been bothering him. The one thing that these doctors agreed about was that it was NOT Cancer related. Unfortunately however, that was not the case. Ben was finally diagnosed with the Bone Cancer Ewings Sarcoma and after his first treatment protocol was declared to be in remission. 3 months later, in June of 2020, Ben relapsed which led to his sudden passing on July 8th of 2021 .
After being fortunate enough to interview their son Christian back in July of 2024, I was equally fortunate to interview Christian's parents Martin and Shanna who talked form their perspective about their then 15 year old son Christian's battle with a Pediatric Brain cancer known as a Pineal Paranchymal Tumor with Intermediate Differentation. Christian received this diagnosis in 2015 and in the previous 15 years , this diagnosis was given a total of 5 times. Fortunately, as the Englerts will detail, Christian is doing as well as possible, some 10 years after a diagnosis that was thought by doctors to be one that he would not be able to survive.
Gisela Chavez's then 4 year old daughter Arianny was experiencing flu like symptoms during the 2024 Christmas season and finally after her fever spiked to the 104-105 range Gisela took Arianny to Advovcate Children's Hospital not too far from Chicago, where she was diagnosed with Acute Lymphoblastic Leukemia. Arianny's diagnosis was given just after her 5th birthday in January of this year, and she has completed 6 months out of a treatment protocol that still has 2 years to go.
After losing 3 lbs out of his less than 30 pound frame and not eating well in late 2021, Shelby Nadeau took her son Stryder to doctors, neither of whom thought that there was anything wrong with him physically. Just a couple of weeks later however, Stryder was diagnosed with Stage 4 High Risk Neuroblastoma after proper tests were ordered at Sacramento Children's Hospital which showed that there were plenty of tumors to be found.
Heather Lino's then 3 year old son James was given a double whammy in 2020 when he was first diagnosed with T Cell Acute Lymphoblastic Lymphoma in July, and then roughly one month into his treatment he was diagnosed with a Chromosomal disorder known as Ring 14 Syndrome. This disorder affects 200-250 people around the world. This affliction causes seizures and intellectual disabilities and can have other problems associated with it as well. James is now 8 years old and is living his best life possible.
Patty Furco's then 4 year old daughter Abby was diagnosed with Pre B Cell Acute Lymphoblastic Leukemia in 2011, a diagnosis which was changed 2 weeks later to Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia. This diagnosis reduced Abby's chances of survival to 20 percent. Patty will talk about the 10 years that Abby was able to somehow survive this very difficult form of Leukemia, which included her doctors saying that she had 48 hours to live in May of 2016. Patty and her husband very sadly began to make funeral arrangements and as Abby's time was supposedly nearing its end, somehow she recovered and was able to live another 5 years until her passing in October of 2021.
Normally a diagnosis of Ovarian Cancer happens to women who are much older than 14 years old, which is what happened to Olivia Hebert in October of 2024. Olivia has been through some difficult times since her diagnosis including a temporary loss of her vision, but she was able to return to school in March, her vision has been getting better, and she is just finishing up a vacation to Disneyworld with her family.
Kim and Trey Bowman's daughter Bella went through a long period of unexplained illnesses until she was diagnosed with an Ependymoma Brain Tumor on New Years day of 2011. During her treatment she went through a period of Proton Radiation which led to a diagnosis of Brain Stem Necrosis, which she was unable to get past. Bella ultimately passed away from this form of Pediatric Brain cancer on December 23 rd of 2011, nearly one year after her original diagnosis.
Cedar Connell was 15 years old when he found himself on his way to Lurie Children's Hospital in Chicago to begin his treatment for B Cell Acute Lymphoblastic Leukemia in 2022. Cedar and his mom Kiki will talk about the difficult treatment that he went through, including his move from Chicago to the Dana Farber Cancer Institute in Boston in 2023. Cedar is now getting ready to do his part for the Leukemia and Lymphoma Society as TEAM CONNELLSLLS will be getting ready for a 31 day challenge beginning on July 1st and ending on August 1st to exercise 3 miles each day for that time period, in the hope that they raise 35,000.
Waiting for a proper cancer diagnosis for 9 months is something that should never happen, especially when the doctor says that the chances of cancer on a 1-10 scale were ZERO in his opinion. Unfortunately that is what happened to Jen and Will Fox in regards to their then 8 year old son who was finally diagnosed with Ewings Sarcoma in the winter of 2018, and passed away on May 25th of 2021.
Aly Arenholz was a freshman in high school when she was diagnosed with Stage 2 Thyroid Cancer when she was 15 years old in 2021. After undergoing a very difficult battle during much of it, Aly just graduated from high school and will be attending the University of Kansas in the fall where she hopes her career path will focus on becoming a Child Life Specialist. Aly will also talk about her Non-Profit KICK CANCER LIKE A GIRL BOSS, which she started while in treatment and focuses on trying to bring a smile to the faces of Pediatric Cancer Patients.
Alexandra Wilson passed away just 10 months after being diagnosed with Acute Lymphoblastic Leukemia in March of 2002, from this Blood Cancer that normally has a very high cure rate. Her twin sister Arianna will talk about her sister and about her role as the now official Executive Director of the Alex's Team Foundation which was named in Alexandra's honor, and helps in many ways the cause of Pediatric Cancer, with an emphasis on the Pediatric Cancer Nursing Community.
Jennifer Vertentes was a police officer in Providence Rhode Island when she decided to go to Hasbro Children's Hospital on Thanksgiving Day of 2018 to meet kids who had to spend their Thanksgiving being treated for different reasons, including being treated for Pediatric Cancer. While she was there she met 3 year old Emerson Lucier who was going through her 3rd battle with Acute Myeloid Leukemia . This meeting inspired Jennifer to start her HERO PACKAGE FOUNDATION to help put a smile on the faces of these kids who were battling these difficult diseases. Jennifer, who in 2023 had to retire from the Police Department after suffering an injury while trying to save a person who was drowning, was also diagnosed with Ovarian Cancer that year. Fortunately for the Pediatric Cancer community, she continues to help these kids as she deals with her disease, that fortunately was diagnosed at a very early stage.
After their 16 year old son Zach passed away from Osteosarcoma in November of 2021, Jon and Jenn Wall wanted to start a non profit focused around some type of Peer Counseling. The found it as they established ZACHS BRIDGE which partners parents who have already lost a child to Pediatric Cancer with parents who are going through their own child's pediatric cancer battle. The parents who have lost a child are there to help counsel the parents who are going through this same type of terrible experience, and trying to help them navigate this path as easily as possible.
Kelsey Lauria began to have massive headaches early in the fall of her senior year in high school in 2014 which led to her diagnosis of Acute Myeloid Leukemia. In the later part of the winter in 2015, Kelsey experienced heart failure which led to her passing on April 18th, just 6 days after her 18th birthday and less than 6 months after her cancer diagnosis. During her treatment, Kelsey started her Bald Beauties Project to help in the fight against Pediatric Cancer and this successful non-profit has been run by her mom Maya since Kelsey's passing.
Despite being diagnosed with a very rare form of Pediatric Brain cancer when he was 6 years old in 2021, Gabe Sorensen is living as good of a life as possible some 4 years later. Gabe was treated at St. Jude's and his goals for the future are either to become a doctor to help cure Pediatric Cancer or become a member of the Space Program.
Livvy Bedard and Caeleigh Brown met while on the Swimming Team in Middle School. Caeleigh was diagnosed with Leukemia while a member of this team in January of 2017, shortly after setting her personal best during a swimming meet. Caleigh is now a Nursing Student at James Madison University. Livvy is working with the Leukemia and Lymphoma Society as she attempts to become a Visionary of the Year by raising money in honor of Caeleigh and what she went through. Livvy began this quest on March 27th and has an upcoming fundraising deadline of June 5th.
After Matt and Breanna's son 10 1/2 year old son Landon passed away from Medulloblastoma in December of 2022, Matt took up running as a way to cope with the grief from his beloved son's passing. In March of this year, Matt's running took him to Lake Folsom in Auburn California where he lives and he began a 140 mile run that honored the memory of Landon and honored 105 other Pediatric Cancer Warriors, some of whom are fighters. some of whom are survivors, and some of whom have passed away. This amazing accomplished was also captured on a 45 minute film which was put together by his "crew" of helpers who helped Matt every step of the way.
Dr. Emma Jones is a Best Selling author because of her book entitled THE PHOENIX BLUEPRINT: RISING STRONGER FROM THE BLAZE OF HEALTHCARE which details the real problem of BURNOUT in the Medical Community. Emma has been a victim of burnout twice and she will talk about her book plus her role as a Palliative Care Physician for Pediatric Cancer and Adolescent Cancer patients.
Dr. Allie Neenan became very interested in Pediatric Cancer while a student at the University of Texas in Dallas and after getting her degree, she received her Masters and Doctorate at Eastern Michigan University, Allie is now a Doctor who focuses on Psychology and has taken her considerable knowledge and skill to the world of Pediatric Cancer where she started her CANCER CUSHION Resource Library, which has answers to so many questions which arise during an individual and family's Pediatric Cancer journey.
When Brandon Cary decided to join the Idaho Pediatric Cancer Coalition as its Secretary he did not envision becoming the President of this non-profit. Since he did however, this Coalition has become the leading Pediatric Cancer non-profit in the area and has plans to expand its scope to other communities in Idaho including Boise in the near future. As part of its mission , the Coalition focuses on helping with the "little things" that the families involved with Pediatric Cancer situations can use as much help with as possible.
Imagine the shock and horror of having a child be diagnosed with Acute Myeloid Leukemia, going through treatment for that for 8 months,, relapsing 2 months later, and then being told that the first diagnosis was wrong, and that the child actually had Ewings Sarcoma. That is what happened to then 2 1/2 year old Connor Mocey who is now 5 years old and doing as well as possible while dealing with this difficult Bone Cancer.
When 3 1/2 year old Angelina Phillips was diagnosed with Stage 4 Neuroblastoma in 2013, one oncologist actually thought that her diagnosis was so bad that her mom Danielle should consider not even giving her treatment, Angelina did receive treatment which included 3 relapses and was able to go on some memorable trips during her battle which ended with her passing just before Covid began in late February of 2020.
Katie Histing was diagnosed with Ewings Sarcoma when she was a 17 year old High School Senior in 2018. Katie fought her disease like a true Champion, made countless friends along the way and will always be known as a Pediatric Cancer Icon. Katie passed away on November 25th of 2024, approximately 6 months after Katie was told that there were no more curative options for her.
Gavin and Wendy Lindberg's son Evan was diagnosed with Stage 4 High Risk Neuroblastoma in 2006 when he was 3 years old. His diagnosis came on very quickly and his cancer spread very quickly. As I said on our podcast, anyone would need a strong stomach just to read about the litany of issues that Evan had to go through before his passing in October of 2010 including trips to 4 different hospitals, 4 relapses, and 4 brain surgeries.
After he had a series of debilitating headaches, 11 year old Brett Haubrich was diagnosed with a Grade 3 Anaplastic Astrocytoma Brain Tumor in May of 2014. Despite always having his thumbs up during his treatment which portrayed his attitude about this fight, Brett lost his battle with this form of Pediatric Brain Cancer on January 10th of 2018.
Emily McHugh went through a very difficult treatment protocol after being diagnosed with Stage 4 High Risk Neuroblastoma in 2009 before she turned 4 years old. Originally Emily was thought to have had Leukemia. Emily also has had to deal with many side effects from her treatment but still has been able to live as good of a life as possible as she is now a sophomore in college, and will be spending her next academic year at Trinity College in Dublin, Ireland.
Ethan Pompeo was 13 years old when he began to experience tics, sudden movements , and deep anxiety which was caused by PANDAS, an inflammatory disease which affects 1 in 200 people and is very difficult to diagnose. At the age of 23 Ethan was finally given his diagnosis and over the last 8 years he has built a business which has focused on the perfectly legal supplement know as CBD to help himself and 40, 000 others find ways to help lessen and eliminate pain that they have been living with.
While rubbing her 3 year old daughter Chelsea's belly, Alison Hicks felt a lump which was shortly diagnosed as a Stage 4 Wilms Tumor. Chelsea fought this Pediatric Kidney Cancer for nearly 2 years before passing away after a treatment protocol which was very difficult from the beginning to its end. As a result of Chelsea's battle and passing, Alison started the Chelsea Hicks Foundation which focuses on keeping a smile on Pediatric Cancer patients as they go through their impatient hospital treatments.
The normal protocol for a diagnosis of Acute Lymphoblastic Leukemia is around 2 years of treatment but Lorie Chartiers daughter Gracie, who was diagnosed with this form of Pediatric Blood cancer when she was turning 10 years old in 2016, did not have the luxury of a normal maintenance program during her recovery. For the past 6 years leading up to 2025, she has struggled with many post treatment side effects which have hampered her, especially from a psychosocial point of view. Now 18 years old, Gracie is doing what she can to lead her best life possible.
Dr. John Van Doorninck is a Pediatric Cancer Hematologist and Oncologist in Denver Colorado. He is also an active member and strong supporter of World Child Cancer, an International Organization whose main focus is to help lower income and middle income countries who do not have the wealth, resources, or expertise to help the Pediatric Cancer communities, as wealthy countries such as the United States are able to do. Dr. Van Doorninck will talk about many facets of this problem, including what solutions are already in place to hopefully bring up the survival rate in these countries to 60 percent by 2030.
Erin Booth's son Landon was diagnosed with Acute Lymphoblastic Leukemia when he was 5 1/2 years old in March of 2021. From that time until he was in remission beginning in 2023, Landon had gone through his treatment well enough, but then after his remission started , so did his side effects . As Landon is now nearing his 10th birthday, these myriad of side effects remain an issue for him and the hope is that they will become easier as Landon moves on and approaches his Survivorship Stage.
Laura DeKraker Lang- Ree knew nothing about Pediatric Cancer when her then 3 year old daughter Cecilia was diagnosed with Acute Lymphoblastic Leukemia in 1999. Since that time, Cecilia has recovered and gone on to lead a very successful and productive life, and Laura was able to learn so much about all facets of Pediatric Cancer that she was able to write a book called THE PARENTS CANCER HANDBOOK - What Your Oncologist Does Not Have Time To Tell You which she just published several weeks ago.
Side Effects and After Effects from any Pediatric Cancer battle can be very difficult, especially when there are so many side effects that are concerning after being diagnosed with Pediatric Brain Cancer. That is certainly the case as we just heard from Stacie Eirich in talking about her daughter Sadie who has had more than a few difficult obstacles to overcome. The hope is that she will find the right people and programs to help Sadie through her toughest times.
Audrey's Children is a movie that will be released in theatres this Friday, March 28th. It is the story of Dr. Audrey Evans, who is very likely the most significant Pediatric Cancer Oncologist of all time. Joe McDonough, who is the Founder of the Andrew McDonough B Positive Foundation , Michael Helfant who has been in the film business long enough to be involved in 150 films, and Julia Fisher Farbman, who is the Screenwriter and Producer of this film will talk about this remarkable woman who did so much for so many children before passing away at the age of 97 in 2022.
After a long period of time with severe stomach pain, Ryan and Courtney Cotton's daughter Julianna had to go through a test which completely missed an 11 cm tumor which was covering 70 percent of her belly before she finally received a proper diagnosis of Neuroblastoma in early 2022. Now 3 years later, Julianna has recovered from 2 relapses, currently has No Evidence of Disease , and is living the life of a normal 6 year old girl.
Terrie Magro will talk about her son Mark who was diagnosed with Hodgkins Lymphoma, just before turning 11 years old in mid March of 2004, and then on June 8th of that year, her 13 year old son Michael was diagnosed with Acute Lymphoblastic Leukemia with a rare T Cell variation . Mark is now nearing 32 years of age and is doing well both health and career wise but unfortunately, Michael passed away on July 30th of 2004, only 52 days after his diagnosis.
Tay Scheibe was diagnosed with Large Cell Lymphoma when she was 10 years old and a 5th grade student on Tuesday, September 11th, 2001. Tay had 1 more cancer fight to go through and by the time she was 12, Tay was on her way to a full recovery Tay spent much of the next years after her recovery trying to work on her own identity and in 2012, started a Toy Drive for the benefit of Pediatric Cancer patients which turned into her now Non-Profit With Love Charity in 2016.
Taryn Jarboe was trying to console her 8 month old daughter June in June of 2021 as she had not been feeling well, and while examining her body, found a lump that was diagnosed as Neuroblastoma. June was supposed to go through an 18 month treatment program but while she was 10 months into her protocol, June developed a stomach bug and just before the radiation part of her treatment was supposed to begin, her doctors gave June scans which found that her Neuroblastoma had relapsed. Very unfortunately, there was only a 5 percent chance that June would survive this relapse and she passed away on March 13th of 2022.
Erica Campbell received her degree in Accounting from William and Mary and her MBA from Duke and then, years later, with advice from her mom decided to leave the business world to try and find her true passion, which turned out to be running a non-profit which concentrated on Pediatric Cancer. Since May of 2017, Erica has found this passion by being the Executive Director of the Pinky Swear Foundation which has worked with over 3000 families who are directly dealing with a Pediatric Cancer battle.
The Bowel and Bladder issues that Emily Stenson's daughter Charlie was suffering from when she was 2 years old in early 2022 were constantly diagnosed as constipation, until she turned 3 and finally a 5 1/2 inch long Mass on her abdomen that had already spread to her liver was found. Charlie's correct diagnosis was a Stage 4 Mixed Germ Cell Tumor and after some very difficult treatment, she was declared to have No Evidence Of Disease in January of 2024. Charlie relapsed in August of 2024 but was once again declared to have No Evidence of Disease in December of 2024, and is doing well enough so that she was as able to begin school in early February.
It has been 6 1/2 years since Gwen Garro's son Guy was diagnosed with Osteosarcoma when he was in kindergarten in 2018. Guy has gone through many difficult surgeries and procedures since his diagnosis and has been able to lead quite an amazing life as he is now a 12 year old 6th grader. A very talented musician with a love for the theatre led him to being able to perform a song by Elton John entitled "I'm Still Standing" in front of 3000 people at Radio City Music Hall and Guy repeated that performance on January 30th of this year at the New York Rangers Casino Night Fundraiser.
After being diagnosed with the Pediatric Brain Cancer Chloroid Plexus Carcinoma in November of 2021, Hudson Gray's doctors had given him a 20 percent chance of surviving 5 years . Now, more than 3 years later, as Hudson is approaching his 5th birthday. his chances of surviving 5 years has gone up in dramatic fashion to 70 percent. Hudson's mom Adisyn will talk about everything that Hudson has gone through to get to this point, including a nearly 7 month stay at St. Jude Children's Research Hospital.
When Rene Michael's 6 year old daughter Alicia was complaining of a backache in December of 2001, little did she know that her backache would lead to a diagnosis of a Peripheral Nueroectodermal Tumor which is a Bone Cancer closely related to Ewings Sarcoma. During her inpatient treatment, her mom Rene tells the story of Alicia deciding to find a way to donate money to the Pediatric Cancer patients and their families who were on her oncology floor. Thus, the Honeysuckle Foundation was born, inspirationally started by Alicia and officially started by Rene who has been the director of this foundation since its inception in late 2002. This foundation focuses on the all important psychosocial aspects of Pediatric Cancer. Today Alicia is approaching her 30th birthday, is married, and living her best life possible.
After 4 year old Jace Serwalt was having trouble breathing early on Christmas morning in 2023, his parents Ashley and Kyle took him to his local hospital where he would be diagnosed with Croup, and then Pneumonia. Shortly after that diagnosis, as Jace was getting ready to go home, another doctor saw Jace, thought that he was looking very pale , and ordered a blood test. Not long after that, Jace was given his correct diagnosis which was B Cell Acute Lymphoblastic Leukemia. Ashely will talk about the road that Jace has taken since then and how he is doing, a little more than halfway through his treatment regiment.
Nancy and Richard Whipple's son Alexander spent 250 days as an inpatient at Tufts Floating Hospital for Children beginning in 2010 as a result of his Neuroblastoma diagnosis in March of 2010 when he was 8 months old. Alexander battled for 13 months with his form of Pediatric Cancer and 2 of his stays lasted for 46 and 38 days respectively. Alexander passed away on April 1st of 2011, after a 16 hour surgery which did not work out as planned.
Crystal Conroy's son Ashton was diagnosed with a very rare form of Pediatric Leukemia known as Acute MegaKaryblastic Leukemia or AMKL in March of 2024 when he was 10 1/2 months old. Ashton has been at Boston Children's Hospital for the past 65 days along with Crystal as the goal is to get him to remission so that he would be able to receive a Bone Marrow Transplant. That goal has not been reached and in fact, his doctors just confirmed that Ashton has had a relapse.
What was thought to be a sprained ankle became a completely different situation for 10 year old Rachel Webster when she was diagnosed with Ewings Sarcoma. Rachel just turned 13 and is doing as well as possible after her battle and living as good of a life as she can. Her mom Marcy will talk about her daughter and the way that she has been able to overcome many obstacles as she now has No Evidence Of Disease.
After falling off a swing when he was 5 years old, Sheri May and her husband Pat noticed that their 5 year old son Braiden's stomach seemed to be expanding. Shortly after that, Braiden was diagnosed with High Risk Acute Lymphoblastic Leukemia. Braiden went through 3 1/2 years of treatment and is now 13 years old, and is living his best life possible.
After taking a swimming lesson in late July of 2022 in very hot conditions, 4 year old Aaron Kline showed concerning symptoms which led his mother Shana to take him to see his pediatrician. A few days later, Aaron was diagnosed with the Pediatric Brain Cancer Medulloblastoma. 7 months later, Aaron completed his treatment at Children's Hospital of Philadelphia and is currently feeling and doing well as a 6 year old first grade student.
The name Sloane means WARRIOR in Irish and it is no wonder that this now 4 year old girl was given that name by her parents Allison and Eric Donnelly. Sloane was diagnosed with Neuroblastoma when she was 2 years old in October of 2022 after her belly seemed to be bulging, which caught the attention of her parents while they were giving her a bath. Sloane now has been in remission for 18 months and is doing as well as possible.
Amy Gillen's 13 year old son Tanner's right hand stopped working while he was taking a quiz at school in February of 2018 and shortly thereafter he experienced Drop Foot. Then the right side of Tanner's body started to become paralyzed, and he was taken to St. Louis Children's Hospital by ambulance where he was diagnosed with a stroke, which Amy knew was the incorrect diagnosis. Finally Tanner was given an MRI and the correct diagnosis of a Grade 4 Glioblastoma Brain Tumor was its result. Tanner passed away from this Brain Cancer at the age of 14 on January 23rd of 2019, exactly 6 years ago today.
Beth Blakey and Katie Jenkins will talk with great passion about their Non - Profit the Cancer Hope Network and its brand new initiative- Hopeful Hearts- Parents Supporting Parents on today's podcast. Both Beth and Katie emphasize that what they do is not just a job, but a Way Of Life.
After Jola Tapper's son Peter was diagnosed when he was 5 years old with Stage 4 Neuroblastoma in October of 2011, he went through a difficult treatment protocol which took him to having No Evidence of Disease on April 12th of 2012. For the next 7 1/2 years, even though he had difficulties, Peter was able to lead as normal and good of a life as possible. Then came December of 2019 and he relapsed by being diagnosed with Synovial Sarcoma. Peter was able to survive for the next 25 months, until his ultimate passing on January 17th of 2022, just 25 days before his 16th birthday.
Tara and Jonathan Sharpe will talk about their decision not to seek treatment for their 5 year old daughter Lydia who was diagnosed with DIPG on August 7th of 2021. They decided that rather then put Lydia through radiation and possible clinical trials which they knew would not ultimately cure her, they wanted to make Lydia as happy and comfortable as possible during her final days, as the only thing she wanted to do was to go home and play as long as possible with her 7 year old sister Madeline.
After hearing something pop in her left shoulder during a virtual school physical education class during the pandemic, 12 year old Grace Messinger was diagnosed with Osteosarcoma. Grace went through some very difficult treatment including 2 Thoracic Surgeries which removed a total of 55 nodules from her lung with many of them being cancerous, a Limb Salvage surgery, and never had any type of break from this very difficult bone cancer. Despite having a great attitude and fighting hard, Grace passed away on September 27th of 2023, just after her 15th birthday.
Hopefully for the 1ST and LAST time, I spoke with a mom and dad who had what I am calling a misfortune on Steroids when Tanya and Luke Palmowski's son Tyler was diagnosed with Medulloblastoma when he was 8 years old in 2015, was able to ring the bell at Stollery Children's Hospital in Edmonton, Albert 1 year later in 2016, and then just as Covid was hitting in March of 2020 was diagnosed with DIPG. Tyler passed away on November 24th of 2020 .
Beginning on February 10th and proceeding into February 13th, Texas Children's Hospital will be hosting the 2nd Childhood Cancer Prevention Symposium. Many critical topics in the Childhood Cancer Community will be discussed during this symposium beginning with the Keynote Speaker address from Dan Fagin, the Pulitzer Prize winning author of the book Tom's River, a Story of Science and Salvation. His book discusses one of the biggest environmental disasters in history on the coast of New Jersey. This disaster caused many children to develop different forms of cancer. His address will begin the Symposium and the word PREVENTION will play a major role and theme in the 2 1/2 day conference.
Just 2 weeks after she was born in July of 2023, Carol Sagnay's daughter Noa was undergoing chemotherapy treatment, as she was diagnosed with Rhabdomyosarcoma, which was diagnosed after she was born with birthmarks all over her body. Carol will talk about the difficulties that Noa has gone through for the past 17 months, including being 5 minutes from passing away according to a nurse. Fortunately Carol herself picked out a drug which was given to Noa beginning in February of this year, that has helped Noa regain much of her health up to this point.
Trista Temimi's daughter Valeria was born on September 11th of 2023 and immediately began having health issues. It took until January of 2024 to finally receive her diagnosis of Neuroblastoma. Since that time, Valeria has been battling this pediatric cancer and today, December 16th, she is undergoing scans to see how she is doing, with the hope being that she is at least stable and hopefully the news will be even better than that for this 15 month old little girl.
Camp Rainbow Gold was started back in the 1980's, with the goal to welcome a small amount of Pediatric Cancer patients for a week of fun and being away from their cancer issues for a short time. Now, some 40 years later, this camp has grown substantially to over 400 attendees which include not only pediatric cancer patients , but their parents, siblings, and survivors to enjoy many activities during the late spring, summer, and fall months. Chief Executive Officer Elizabeth Lizberg discusses this camp, which in reality is a 365 day a year concern for Elizabeth and her staff.
Tommy Stackhouse was diagnosed with Acute Myeloid Leukemia just two weeks before his 16th birthday in May of 2019. Tommy graduated from High School and during his senior year he was voted Homecoming King. After two Stem Cell Transplants and while Tommy was studying at a Community College, Tommy's health became a serious problem and he passed away from this most difficult form of Blood Cancer on May 26th of 2022.
Brandon and Amanda Huffman's daughter Avery complained of double vision and then her right eye became introverted in June of 2015, and after 2 visits to a Pediatric Opthamologist, she was diagnosed with DIPG. Avery's battle with this form of Pediatric Brain Cancer lasted only 7 1/2 months before her passing on February 16th of 2016, and she was even denied the Honeymoon period that many DIPG sufferers get to experience.
11 year old Noah Klein began having trouble with his motor skills as well as fatigue in January of 2022 and quickly was diagnosed with DIPG. Noah was able to feel well enough by May of that year to attend a Miami Heat playoff game and to meet Jimmy Butler who was their star player. His mom Elan talks about what Noah went through which included a honeymoon period that summer where Noah was able to travel with his family and was feeling good until the fall season when his condition began to deteriorate, and led to his passing on February 17th of 2023 when he was 12 1/2 years old.
Sil Lutkiwitte is the Chief Executive Officer and Randy Schrecengost is the Chief Scientific Officer for Targepeutics, and their company has created a protein known as GB-13 which is targeted to help in the fight against DIPG and DMG. This protein is designed to kill off bad brain cells while completely avoiding good brain cells and they are hoping to get the necessary financing to be able to bring this protein to Clinical Trial in the near future.
Hollis Belger was told by her mom Allison when she was only 9 years old about the importance of St. Jude Children's Research Hospital and what its Mission was in fighting pediatric cancer. To say that Hollis took her mom's message literally is the understatement of the year. Almost immediately Hollis started fundraising for St. Jude by using her incredible ability to juggle a soccer ball and now at, 20, she has raised $795,000 for St. Judes and has accomplished many other great things in trying to encourage young people to get involved in causes that empower themselves and empower others to give back to those that need it in many ways, including philanthropy. Hollis is truly one of a kind.
Chrissy Zimmerman's 4 year old daughter Aria had no symptoms when she went to school in early September of 2022, but by the end of the day, she had 2 golf ball sized swollen nodules that were noticed by her teacher. That led to her diagnosis of T Cell Acute Lymphoblastic Leukemia , which was followed by her being diagnosed with Hemophagocytic Lymphohistiocytosis and then by Langerhans Cell Histiocytosis which led to her passing in February of 2024.
Carley Rutledge went through much of 2010 in pain but not getting any correct answers about the cause of this pain for most of that year, until she received the shocking diagnosis of Ewings Sarcoma. Carley went through 2 years of difficult treatment and then was given an immunotherapy drug that worked and she experienced 8 years of being cancer free from this form of Pediatric Bone Cancer. Always active and with many accomplishments, Carley then felt back pain during her run in a Half Marathon which unfortunately indicated her Ewings Sarcoma had relapsed, and this led to her passing in November of 2021 at the age of 27. Carley's mother Laura will talk about her beloved daughter and about her family's Rutledge Cancer Foundation on today's podcast.
Even at the age of 7 Eric Buther's son Santiago was a graceful athlete but then he became clumsy and also was feeling tired and lethargic before he was diagnosed with DIPG in 2018. Santiago was able to go through an extended "Honeymoon" period after being treated at St Jude Children's Research Hospital but then he relapsed and after a stay at Cincinnati Children's Hospital he passed away on January 17th of 2020, while in 3rd grade.
Not only do Becca Ingersoll's twin boys Lincoln and Logan have special needs, Lincoln was diagnosed with B Cell Acute Lymphoblastic Leukemia when he was 3 years old in January of 2020. Lincoln also has Cerebral Palsy, Hydrocephalus, and Autism. Becca will talk about the very difficult and tricky road that she and her husband Josh have been navigating for the past 7 years, and will also discuss her work as an activist and advocate in the cause of Pediatric Cancer.
Becky Handley overheard her 12 year old daughter talk about having double vision to her ballet teacher in September of 2020 after complaining of headaches in the preceding days. The next day which was September 20th, Ava was diagnosed with DIPG. Ava did experience a six month honeymoon period from January of 2021 through July of 2021 but eventually her condition deteriorated and she passed away from this terrible form of Pediatric Brian cancer on June 15th of 2022.
Mylaina Schippers beloved older brother Sal lived for over 6 years after his diagnosis of Leukemia in the early days of 2016 when Sal was 15 years old. Mylaina will talk about Sal's journey in which he had to go through 2 relapses but also had some good moments and accomplishments when he was feeling and doing well. Sal passed away from the Pediatric Blood cancer in April of 2022, one month after his 21st birthday.
On October 24th of 2011 Reilly Cardella's best friend Kassie passed away from Leukemia when they were both 13 years old. Reilly will discuss the relationship that they had and the inspiration that Reilly developed to become a very strong voice in the cause of Pediatric Cancer. When Reilly was 20 years old she started her non-profit Love For Lady Bug which was named after Kassie, then became a Board Member and Vice President of the Glimmer of Hope Foundation , and in 2023 was voted Miss Apopka, which is a city of 55,000 located near Orlando Florida, and recognized her for all of the advocacy work that Reilly has been involved with. Her advocacy work for the Pediatric Cancer community will undoubtedly continue for many years to come.
Makenna Thomas had a back that was painful, a right arm that turned numb, and fingers that she could not move, when she was diagnosed with Meningioma of the Spine in early 2018 at the age of 14. Makenna will talk about her battle both physically and even more so emotionally during that period and even beyond, and will also talk about her very successful recovery and life in which she is a senior at UCLA, is the President of the American Cancer Society on campus, oversees the Relay For Life Team at UCLA which is the leading fundraising college in the country for that event, and is studying neuroscience.
Amiee Mittleman was told about a group of parents that had children who had been diagnosed with Neuroblastoma in 2023. This group had formed an organization called Band of Parents. After doing her research Amiee joined the group and was fortunate enough to connect with a doctor that had discovered an antibody for Neuroblastoma patients. Amiee's then 2 1/2 year old son Julian had been diagnosed with Stage 4 High Risk Neuroblastoma in December of 2022 and during his treatment in 2023, this antibody was given to Julian. In July of 2023, Julian had No Evidence of disease, and now, 14 months later, that designation still stands. Amiee now serves on Band of Parents Board of Directors.
Melissa Nowicki's 3 year old son Brock was diagnosed with a Pediatric Brain cancer known as CIC-DUX4 Fusion Sarcoma in April of 2023. Both his surgery to remove his tumor and his follow up scans were perfect as 100 percent of his tumor was removed and there was no spreading of his disease. Brock is now 4 years old, was honored by the New England Revolution Professional Soccer team at Cancer Awareness Night on September 28th, and is doing well health wise.
When Jamie Moore's 6 year old son Mason was experiencing headaches, having vomiting episodes, and having little energy, she and her husband were frustrated at first by the response they were receiving from doctors who did not recognize that what was happening to Mason was a "head issue". Mason was finally diagnosed with Anaplastic Large Cell Medulloblastoma on February 20th of 2023, had much of his treatment at St. Jude Childrens Research Hospital in Memphis, but for the most part the difficult treatment that he underwent did not help and he passed away on November 6th of 2023, just 10 months after his diagnosis.
Jamie Buckner's beloved nephew Kyler passed away on March 2nd of 2021 after enduring a 16 month battle with the Pediatric Brian Cancer DIPG. Jamie is a filmmaker and he is currently working on a Documentary film which highlights Kyler's brain cancer fight. Jamie hopes to have this film completed in early 2025 and his initial marketing plans include having it shown at well known film festivals, and eventually having it shown at the White House to help raise awareness for this most dreaded form of Pediatric Brain Cancer
After 2 year old Max Gagnon was diagnosed with B Cell Acute Lymphoblastic Leukemia in 2014 and went into remission , the hope and expectation for his dad Michael and mother Amber was that the worst was behind them. Max however, relapsed in 2022 and just completed his treatment in August of this year. Michael will talk about the past 10 years which hopefully will now lead to a path of good health for Max.
Megan Nelson's mom felt an odd lump as she was hugging her 2 year old granddaughter Ella before returning home after Megan had given birth to her son Francis in 2020. Upon hearing this, Megan took Ella to her pediatrician and shortly thereafter she was diagnosed with the Kidney Cancer Wilms Tumor before this diagnosis was changed 3 days later to Stage 4 High Risk Neuroblastoma. Megan and her family were living in Virginia at the time but moved to Los Angeles so Ella could get her treatment at the Children's Hospital of Los Angeles. Now 4 years later, Ella is doing well and is living her best life possible.
Michelle Zenie's son Cole, now 26 years old , married, and a High School Biology Teacher was diagnosed with Acute Lymphoblastic Leukemia in May of 2001. Michelle was also a teacher but decided after Cole's recovery to get involved as an activist and advocate in the cause of Pediatric Cancer. This led to her becoming the Executive Director of the Pediatric Cancer Foundation of Lehigh Valley in 2014, a position that Michelle has held for the past 10 years. This foundation focuses on whatever it can do to help individual families get through their pediatric cancer struggles during treatment , after treatment, and if there is an unfortunate bereavement situation
Madison Cotton went to her Primary Care Physician because of troubling cysts in her breast in 2017 and the fact that her mother had already been through breast cancer. Madison was basically dismissed by her doctor and eventually in 2022 was diagnosed with Breast cancer. Since that time she has struggled both physically and emotionally with a variety of difficult issues that she has gone through as an AYA cancer patient, and has only begun to feel better and have a more meaningful existence during this summer season.
After noticeably limping during a soccer game in 2019, Maggie Spada's daughter Lucy was diagnosed with Ewings Sarcoma at the age of 9. After going through a very difficult treatment protocol, Lucy is now 5 years removed from this diagnosis and is doing very well. Maggie will talk about Lucy and will also talk about her Little Warriors Foundation, which she and her husband Piero started when they learned about how little money the Federal Government was contributing to Pediatric Cancer, and also learning about the treatments that Lucy and other Ewings Sarcoma patients have to go through, which has not changed in over 40 years.
When 10 year old Aaron Gaberman was diagnosed with a form of Pediatric Brain Cancer in May of 2005, his older brother Jon was right by his side from that day until this present day, doing whatever he could then and can now to be by his brothers side as a devoted sibling. The brothers will talk about the difficult experiences that they have had through the years , and the bond that they have established which is an unbreakable one.
When Lauren Bujnicki's 2 year old daughter Madison had some symptoms that needed to be checked out, the thought was that she might have a Urinary Tract Infection. Everything seemed okay except for a urinalysis that was off, but just a few days later Madison developed a low grade fever, was irritable, and vomited.
Madison's diagnosis turned out to be the Kidney Cancer Stage 4 Wilms Tumor. This diagnosis was given in February of 2022 and for the next 8 months, Madison went through an arduous treatment protocol. By October of 2022, Madison did not have any Evidence of Disease and , now 2 years later as a 4 year old, Madison is doing as well as possible.
Teri Gaberman's son Aaron was diagnosed with a rare form of Pediatric Brain Cancer when he was 10 years old in 2005. The next year Aaron contacted former New York Yankee great Bobby Murcer who had been diagnosed with a Glioma type of Brain Cancer at the end of 2006 and that started an incredible friendship which lasted until Bobby passed away on July 8th of 2008. Teri will talk about her son's amazing life and her Berni and Mercer non- profit which has helped and is helping so many in the Pediatric Cancer community.
When Jessica Robertson's 7 year old son Kai developed severe leg pain on February 10th of 2024, Jessica and her husband thought that it might be a case of growing pains, as he had been totally healthy up until that point. Unfortunately after testing at Cook's Children's Hospital in Fort Worth, Texas, the shocking diagnosis 2 days later that was given to Kai and his family was B Cell Acute Lymphoblastic Leukemia. It has now been nearly 7 months since this diagnosis and Kai is doing well in his maintenance treatment program.
Sadie Eirich's left eye seemed out of position in the early fall of 2022 and eventually led to her diagnosis in October of that year of the Pediatric Brain Cancer Medulloblastoma, which was located in the pineal region of her brain. Sadie was 14 years old at the time and her treatment initially took her to a children's hospital in Jefferson Louisiana where she had 5 surgeries, followed by 9 months of treatment at St. Jude Children's Research Hospital from December of 2022 through September of 2023. Sadie was found to have No Evidence of Disease in September of 2023 and that situation continues to be the case nearly a year later.
After being diagnosed with Pre B Cell Acute Lymphoblastic Leukemia in September of 2005, Alisha Wagoner was able to completely recover from her battle with this form of Pediatric Blood Cancer and now, nearly 19 years later, she has put together quite a resume. This resume includes an outstanding college softball career, prestigious awards from both her athletic and humanitarian accomplishments, and the hope that her professional career will take her to becoming a personal trainer and owning her own gym.
Kelley Bernard was diagnosed with Acute Lymphoblastic Leukemia when she was 14 years old and has now been cancer free for the past 16 years. Because of the treatment that she received from the nurses at Boston Children's Hospital , Kelley decided that she wanted to become a Pediatric Oncology Nurse which became her career path after graduating from St.Anselm's College with a Nursing Degree. Kelley has also participated 3 times in both the Boston Marathon Jimmy Fund Walk and the Pan Mass Challenge and is currently training for her upcoming boxing match hosted by the Non-Profit Haymakers For Hope.
As he was beginning his final year in college and having an excellent season running Cross Country , Justin Spoon developed a strange lump next to his nostril. After a very long and difficult wait for 4 weeks after a biopsy was performed , Justin was diagnosed with Embryonal Rhabdomyosarcoma in the fall of 2020. Justin not only fought his battle for 2 and half years, he decided to donate his tumor for research which has proven to be of great help in learning more about this form of Pediatric Cancer. Justin passed away from his gallant fight in March of 2023.
Mecklin Ragan is currently a General Surgery Resident in Fairfax , Virginia who hopes to become a Pediatric Oncology surgeon . She was also the older sister by 18 months of her brother James who was diagnosed with Osteosarcoma in 2006 at the age of 13. Mecklin tells the story of James who went through a 7 1/2 year protocol which unfortunately ended with his passing from Rice University during his sophomore year. Mecklin is the co-founder of the Triumph Over Kids Cancer Foundation, which is doing a great deal of work to help Pediatric Cancer patients and their families.
Heather Roy's 10 year old daughter had just completed a 10 K road race and was seemingly very healthy in September of 2018 except for a nagging pain in her right side that would not go away. This pain, thought to possibly be appendicitis, turned out to be Stage 4 High Risk Neuroblastoma, which was diagnosed at a much older age than this form of pediatric cancer is normally diagnosed. Evelyn struggled for 18 months with this disease before passing away in February of 2020.
Very often, when a newborn is diagnosed with the genetic condition called Neurofibromatosis which can lead to tumors being formed on nerve endings, these tumors turn out to be benign. Unfortunately , Jessica Messer's son , who was born with this genetic condition had a bulging eye that eventually was diagnosed as Embryonal Rhabdomyosarcoma. Bennett fought this disease as long as he could before passing away at the tender age of 2 years old in February of 2023.
Jack Gates went to Colorado College where he played Division 1 College Hockey, but he had no real idea early in his college days about where his career path would take him. After going to visit children with pediatric cancer in a hospital setting along with some of his hockey teammates, he decided to start his own non profit called Triumph Together, which makes it possible for these kids and adolescents battling cancer and other serious illnesses to make Memorable Moments, with the help of both collegiate and professional teams and individual athletes. His career choice is now well established, as he is helping and will continue to help so many kids who can use all the happiness that they can get.
After seeing her then 9 year old son Jaxen hopping on one leg in June of 2023 because he felt pain, Maggie Licea wanted to take Jaxen to his pediatrician who was not available. Instead, Maggie took Jaxen to the nurse practitioner and told her that she suspected that he had cancer. The nurse practitioner disagreed but Maggie's persistence finally prevailed and Jaxen was given the necessary testing that revealed a diagnosis of Osteosarcoma. It has now been 14 months since Jaxen's diagnosis and he has no evidence of disease.
Weston Hermann was first diagnosed with a very rare form of a Glioma type of Pediatric Brain Cancer when he was 7 years old in 2014 and is now going through his 5th battle with this disease within the last 10 years. His father Jared will talk about the amazing fight that Weston has been through and that his resilience has allowed him to still be able to perform as a well known and well regarded 17 year old hockey player , despite playing many games while going through a chemotherapy regiment.
Christian Englert had to deal with hand tremors for the 1st 15 years of his life which were thought to be genetic, considering that his sister and father both had similar tremors. However, Christian's tremors got worse in 2015 and the 15 year old finally went to a neurologist and not long after that, he was diagnosed with the more than rare Brain Cancer known as Pineal Parenchymal Tumor With Intermediate Differentation. This form of cancer was only diagnosed 5 other times in the years between 2000 and 2015 with all of those coming in people who were at least middle age. Miraculously according to his doctors , Christian is now 8 1/2 years past his diagnosis and is a considered to be a cancer survivor. Christian has graduated college, received his Masters degree, is very much an advocate for the Make A Wish Foundation, and is living as good of a life as possible.
Len Forkas's son Matt was diagnosed with Leukemia while in 3rd grade. Matt became depressed that he was not able to go to school and communicate with his classmates and friends, so Len created a Video Conferencing System which allows these patients to be in touch virtually with their peers on a daily basis . This non profit is called HOPE CAM and 4500 children and adolescents have been able to use this system, which greatly helps minimize the problem of social isolation.
Shelle Arnold attended her first Relay For Life Event in 2007 in support of her 26 year old daughter in law Becky who was fighting Ewings Sarcoma. In 2008 Becky passed away and Shelle got fully involved in this event as an organizer and eventually was chairing this fundraiser in several counties in Kansas. Shelle also became involved in the Rock Chalk Roundball Classic as a Board Member for this fundraiser which was started by Kansas Jayhawk Play By Play Announcer Brian Hanni. This event has raised more than $1 million dollars for the fight against Pediatric Cancer.
Jocelyn Croxen was 7 years old in September of 2019 when she was diagnosed with T Cell Lymphoblastic Leukemia. Both Jocelyn and her mom Tracy will talk about Jocelyn's ordeal, along with what she has done as a Pediatric Cancer advocate which includes her raising $100,000 for this cause, her special treatment at a Luke Combs concert, and her being named Girl Of The Year by the Leukemia and Lymphoma Society in 2021. Jocelyn is now 12 years old and is living her best life possible.
Jaycee Vallier was diagnosed with Chloroid Plexus Carcinoma, a form of Pediatric Brain Cancer on January 30th of 2020. This cancer has both limited options and a very poor outlook upon diagnosis. Unfortunately, as Jaycee's parents Curtis and Trish tell their story, these conclusions turned out to be accurate and despite going through so much for over 500 days, Jaycee lost her battle on July 3rd of 2021. Curtis and Trish will talk about their beloved daughter plus their non-profit- Battlecorn Care Packages, which they started while Jaycee was still alive and was able to help other pediatric cancer patients.
Rachel Krieger is a Primary Nurse Practitioner and when her son Oliver presented troubling physical symptoms when he was 9 months old, Rachel took him to the pediatric emergency room at New York University where an MRI revealed a large tumor on his Cerebellum in April of 2019. This tumor turned out to be the Pediatric Brain cancer known as Atypical Teratoid Rhabdoid Tumor or ATRT. Oliver has gone through some very toxic and difficult treatments including a full brain and spine radiation procedure. Oliver was considered stable in 2022 and is still considered stable as he approaches his 6th birthday. Rachel will talk about her son's fight and about the Non-Profit Ollie's Orchestra that she and her husband Max started to help pediatric cancer patients.
In 2021 Ann Ramer and Bobby Krabill, members of the State of Ohio's Board of Health joined forces to create a State Cancer Plan which is focusing on Pediatric Cancer to help increase awareness of this disease and make it much easier for families who are going through this battle to navigate all of the issues and questions that can come up during this time period. This plan is now in its 3rd year of a 10 year program which has already made great strides for these families in Ohio, and promises to continue this path for many years to come.
When Ramona Jarvis's 19 month old daughter Leila was running on and off fevers, she was told by Leila's doctors that these were caused by viruses and that her fevers would go away. Unfortunately that was not the case and during that summer of 2017 , Leila was diagnosed with High Risk Stage 4 Neuroblastoma. After a harrowing regiment of treatments which included 132 days of being an inpatient, Leila was put on a DFMO Clinical Trial at the Arnold Palmer Children's Hospital in November of 2018 which ended in 2020. Today, Leila is 4 years past this Clinical Trial and thankfully is both doing and feeling well.
Ashley Guthrie's eldest son Davis was diagnosed with Acute Lymphoblastic Leukemia when he was 6 years old and now at 16, is well into his survivorship years after his pediatric blood cancer battle. Ashley volunteered at the Children's Hospital in Chattanooga Tennessee while Davis was in treatment and is now the Clinical Liasion and Board Member of the Austin Hatcher Foundation for Pediatric Cancer. This Foundation was started by Amy Jo and Dr. James Osborn after the passing of their son Austin in 2006 from Brain and Spinal Cancer.
Just by chance on a Saturday evening in 2021, Courtney Marzilli noticed a lump on her then 6 year old daughter Chloe's thigh. This lump turned out to be a tumor and Chloe was diagnosed with Rhabdomyosarcoma just before she turned 7 years old. Chloe went through a 42 week Chemotherapy treatment protocol at the Jimmy Fund Clinic in Boston and completed her treatment in the fall of 2022. Now 10 years old, Chloe is doing well physically and thankfully is leading as good of a life as posssible.
Pain and suffering were a major part of Estella Patrick's life ever since she was born with Spina Bifida in 2004. Fortunately Estella had surgery to correct this Spinal Cord disease when she was 3 months old and now is an extremely talented and successful artist and illustrator. Her illustrations have appeared in 3 books which have been published by authors who are well known members of the Pediatric Cancer community.
Melissa Rodger's then 9 year old daughter Chloe had a lingering cold in July of 2022 and was told by a doctor that her cold was just a product of "back to back" viruses. Not too long after that Chloe was dehydrated and this time she was sent to a hospital emergency room where she was quickly diagnosed with Acute Myeloid Leukemia. Chloe had to undergo 2 Bone Marrow transplants with first, Melissa, and then her father Luke being her donors. Today Chloe is back in school, doing very well, and hopes to graduate from 6th grade when the academic year ends in December. Melissa will also talk about her own hard fought battles with Anxiety on today's podcast.
The discomfort that 5 year old Anthony Terrell was suffering from in late 2022 was originally thought to be simple growing pains, but by March of 2023 he was diagnosed with Acute Lymphoblastic Lymphoma which was quickly changed to a diagnosis of Acute Lymphoblastic Leukemia. Anthony is now roughly 40 percent into his Continuation Therapy protocol and he is doing so well that his doctors have put his survival rate chances at 96 percent.
In 2008, Dr. Susannah Koontz left her role as a Clinical Pharmacy Specialist at MD Anderson and started her own Oncology Consulting business called Koontz Oncology Consulting, which she has been at since 2008. Dr. Koontz will first discuss some of the improvements and standards that she initiated at MD Anderson which still are in place today, and then talk about her consulting company and the different interest groups that she deals with and the different facets of Pediatric Oncology that are of prime importance, as she tries to help these kids and the treatment that they receive for their own cancer battles.
The joy of the birth of Savannah Hansen on July 6th of 2023 was muted as there were bruises all over her tiny body as she was born. These bruises signified Acute Myeloid Leukemia. Savannah's mom Sarah will talk about her ordeal which ended up with Savannah being transferred from her local hospital in Las Vegas to Children's Hospital of Los Angeles where she completed her treatment on January 29th of 2024. Savannah is doing as well as possible health wise.
Ryan Soileau's son Henry had a heart rate of 250 when he was 6 weeks old in February of 2020 when he was taken to the emergency room by his mom and Ryan's wife Ashley. It was discovered that Ryan was suffering from Bone Marrow failure which has a one in a million chance of happening. Remarkably, Ryan is now well on his way to leading a healthy life as his Bone Marrow has recovered on its own and the Bone Marrow transplant that the doctors at St. Jude thought he would need, has been taken off the table and Henry is feeling as well as possible, some 4 years after his original diagnosis.
Just 4 months after her 13 day old son passed away from a heart defect in the fall of 2016, April Standring's 2 1/2 year old daughter Mazy was diagnosed with a high risk form of Leukemia . April will talk about the journey that Mazy and her family have been on which took a very positive turn in July of 2019 when Mazy was able to ring the bell at her hospital, signifying the end of her treatment. Mazy is now 9 years old and living her best life possible.
The original intent that Chelsea Craigs and Mandi Noland had was to invite stay at home moms to get together for a social gathering. What happened after that was that this "Social Gathering " became a Non-Profit to help families in Arizona who had children that were battling some type of Pediatric Cancer. This non- profit was named the Copper Rain Foundation, and is really just in its infancy as it becomes more and more involved in finding children and families to focus on and to advocate for in this Pediatric Cancer fight.
Katie Histing was diagnosed with Ewings Sarcoma as a 17 year old during the Christmas season of 2018. Katie has battled with this form of Pediatric Cancer for 5 1/2 years and had what was hoped to be her final Chemotherapy treatment 7 months ago, just after her Stem Cell transplant. Through all of her difficult times, Katie is doing what she can to give back to others through her Katie's Collective business which features her beautiful artwork. Yesterday May 1st was Katie's 23rd birthday. In the cruelest twist, Katie found out the heartbreaking news that a recent blood test confirmed that her cancer was back and that there are no curative options for her at this point. Katie deserves all of the prayers and support we can give to her and one way that we could honor Katie and her fight is to consider purchasing a shirt or donating to her shirt fundraiser. The link to that is https://www.customink.com/fundraising/hibiscus-of-hope.
You can also purchase Katie's art products at https://katiescollectiveus.etsy.com
N'Jhari Jackson had 2 polyps removed from his vocal chords when he was 5 years old and has struggled mightily with physical and mental issues for the last decade and a half. Now a University of Florida graduate, N'Jhari will detail his life which has been dedicated to giving back to others in need, and , despite struggling with the aforementioned issues, has accomplished a great deal and won many awards in his still very young life. One of his many accomplishments has been being a member of Dick Vitale's All Courageous Team in which N'Jhari was highlighted in Dick's book UNTIL MY LAST BREATH : FIGHTING CANCER WITH MY YOUNG HEROES. All of the proceeds from this book will benefit the Dick Vitale Pediatric Cancer Research Fund at the V Foundation for Cancer Research.
Maurice Ahern and his family were living in China in 2010 when his 1 year old son Micah was diagnosed with Neuroblastoma. Maurice will talk about quickly moving his family to Orlando to have Micah's surgery and his 6 year ordeal fighting this disease which ended with his passing in July of 2016. Maurice will also talk about his love for the Food Industry and for Baking, which he has used for the past 7 years to help honor the memory of Micah and keep his legacy alive.
Hearing loss is a very well known side effect and long term effect that survivors of Pediatric Cancer must be aware of, especially if they are being treated with Cisplatin during Chemotherapy, which is a very effective medicine in helping to save lives of these children and adolescents . Holly Reames and Eric Meyer, who work at Fennec Pharmaceuticals will talk about the ramifications of this hearing loss, which if it happens, is always permanent.
For the past 3 years Mariah Forster Olson and Mary Beth Collins have been working on a Toolkit to help Pediatric Cancer survivors and their families try and navigate through the period when they have gone past the 5 year mark since their cancer diagnosis, but have many issues to conquer both physically and mentally because of what they went through during their cancer experiences. This toolkit is now available and has already helped many patients and their families who have entered the Survivorship phase.
Mariah and Mary Beth are both members of the very important and successful Non-Profit known as the Coalition Against Childhood Cancer or CAC2.
Tabitha Odom thought that her 2 year old daughter Sailor might have the flu when she brought her to a Walk In Clinic in November of 2022 as she had not been feeling well. Later that night Tabitha became worried when she received a phone call at 9:00 PM and said that Sailor needed to go to a hospital emergency room. After that she was sent to UTMB Hospital in Galveston Texas where Tabitha was told that Sailor had B Cell Acute Lymphoblastic Leukemia. Tabitha will talk about Sailor's successful treatment protocol in which she is expected to complete her maintenance program in January of 2025.
In April of 2023 Vickie Stevens and Don McCarthy's little son Rio was experiencing a loss of appetite, limping instead of walking, and losing energy. After a stay at a local hospital did not solve the question of what was wrong with Rio, he was transferred to a large hospital in London and was finally diagnosed with Stage 4 Neuroblastoma. Rio is now into his 8th month of treatment and the hope is that he will at some point be able to travel to Memorial Sloan Kettering in New York to take a drug that has proven to be highly successful in treating Rio's form of Neuroblastoma . Vickie and Don will also talk about the organization Solving Kids Cancer which has proven to be very helpful for their family and many others in England. www.solvingkidscancer.org.uk/children/rio+1
Abby Wagle and Ella Bresee met in 2019 when they played competitive basketball against each other. They quickly became best friends and then in 2021, Ella was diagnosed with the Pediatric Brain Cancer Medulloblastoma. Abby is now a sophomore in high school and will talk about the close friendship that she and Ella had, and how difficult it was when Ella passed away in September of 2022. Abby will talk about the many ways that she has honored her friend since then and will continue to honor her in the years to come.
After little Charlie Stevens was taken to his doctor after he developed a lesion in his right eye, it became apparent that he had too many white blood cells, but an X Ray and ultrasound showed him to be healthy in the early days of 2020. Just six weeks later Charlie was diagnosed with Acute Myeloid Leukemia. A very aggressive treatment protocol led to his remission that year but just before Christmas Charlie relapsed and he passed away on January 27th, of 2021, just 2 days after his 3rd birthday. Charlie's mother Kelly will talk about her beloved son, and how she has become an activist in her native home of Adelaide Australia to help other AML and Pediatric Cancer patients and their families.
Brian Burkhardt and his family left their home in Miami and went to the Florida Keys during Spring break in early in 2020 where they had to isolate because of Covid. Two days after they returned home his son Oliver was having trouble breathing which sounded like a Covid issue, but turned out to be the Pediatric Blood Cancer Acute Lymphoblastic Leukemia. Brian will talk about this diagnosis, Oliver's successful treatment , and the more than creative Non-Profit called the Oliver Patch Project. which Brian and his wife Trish started in Oliver's honor.
When Vara James was 9 years old in 2016 she was diagnosed with the Kidney Cancer Wilms Tumor. Now 17 years old, Vara has been cancer free since February of 2018 and has many options to look at as she is able to live as normal of a life as possible. Vara and her mother Emily Gordon will talk about these past 8 years which include helping to start the Rock Cancer program along with Neuro Oncologist Dr. Carl Koschmann, which gives Pediatric Cancer patients the opportunity to gain confidence and a sense of accomplishment by learning to Rock Climb.
It took 5 years after waking up each day feeling tired and sick, but Kim Denice was finally diagnosed with Hodgkins Lymphoma as a senior in high school in 2013. Kim will talk about the struggles that she had while she was in treatment and even to this day, as she has been cancer free for over 10 years. Kim will also talk about her involvement in the Leukemia and Lymphoma Society and the fact that she is able to live her life in the best manner possible.
Christen Gray's 5 year old son Finn complained of back pain in the day's before he was to go to kindergarten in 2018. As Christen drove Finn to school for his first day, his back was hurting so much that he had trouble sitting in his car seat. Just a few days later Finn was diagnosed with the Pediatric Bone Cancer Ewings Sarcoma. Christen will talk about Finn's all too short life which ended on January 21st of 2020, and the non- profit Finn's Fighters which her family started in 2019 and its mission, which is to raise awareness for the cause of Pediatric Cancer and to help Tampa Bay area families who are going through their own cancer issues with their children.
When 10 year old Oliver Smith was trying out for his under 11 hockey team in the fall of 2016 his father noticed that Oliver was not as agile, fast, and flexible as he normally was. He also complained of pain in his groin area. Other symptoms arrived and in early 2017, Oliver was diagnosed with Ewings Sarcoma which was already at Stage 4. Oliver fought his battle for nearly 2 and half years before passing away on June 27th of 2019, just 1 day after his 12th birthday. Oliver's parents Bryan and Shauna will talk about their beloved son and the Ollie Bots Project that they started in his honor, which is helping to fund research for Ewings Sarcoma and to help local families fighting Pediatric Cancer.
It took a confirmation from St. Jude Children's Research Hospital to finally confirm that 6 year old Mia Falvey had Medulloblastoma after waiting for an official diagnosis for more than 30 days. Since the summer of 2022 Mia has been under treatment for this most common form of Pediatric Brain cancer and is waiting for an upcoming MRI which will tell the doctors what her next treatment protocol will look like.
Bothered by pain in her shoulder blade since the fall of 2020 while she was a member of her high school volleyball team, 14 year old Eliy Simmer saw many doctors but did not get diagnosed with Ewings Sarcoma until May 12th of 2021. Eliy spent the rest of that year undergoing treatment for this form of pediatric cancer and in January of 2022 her treatment protocol successfully ended. Now a high school senior, Eliy is looking forward to the next steps in her life in which she has a variety of choices to look at. Along with these choices, Eliy will continue her Eliy's Sunflowers Non-Profit, which she started to help fellow teenage cancer patients have as much comfort as they can while trying to get through their own pediatric cancer battles.
Maggie Schmidt was a 16 year old seemingly healthy teenager when she competed in a Tough Mudder race in the summer of 2016. 18 days after that, Maggie started experiencing symptoms that would lead to a diagnosis of Malignant Rhabdoid Tumors in October of that year. As she tried to overcome whatever setbacks came her way, Maggie had one bad break after another and passed away from this form of Pediatric Cancer on June 1st of 2017, just 6 weeks after her 17th birthday. Her mom Donna will talk about her beloved daughter and will also discuss Maggies Mission, a Non-Profit that her family started just 4 months after her passing and means so much to Donna.
Parker Watson was diagnosed with Acute Lymphoblastic Leukemia when he was 4 1/2 years old and is now a Pediatric Cancer survivor. His parents Michelle and Mike found out about Team Impact and Parker was connected with the Harvard Men's Hockey Team, has been their Team Impact Representative since January 31st of 2023.
Noah Janfaza in his 3rd year of being the Student Manager for the Harvard Hockey team and is also the Liason between Team Impact and Harvard. Parker and Noah will both talk about the great experiences they have had since Parker became a full member of the Harvard team.
Michelle Watson's 10 year old son Parker was diagnosed with Acute Lymphoblastic Leukemia when he was 4 1/2 years old in 2017. Now 10 years old, Parker was connected through Team Impact with the Harvard Men's Hockey team and he has been an official Team Member of the Crimson since January 31st of 2023. Michelle talks about how much Team Impact has meant to her family and how much joy that Parker has felt being with a group of college athletes that take their role of accepting Parker very seriously.
Amanda Cruz has the difficult task in explaining all the things that went wrong during her son Zioniah's treatment for Lymphoma which started in late 2022 and lasted until his passing on September 19th of 2023. Amanda will talk about the myriad of mistakes that were made medically which led to Zioniah unnecessarily being in a great deal of pain during much of his treatment protocol. Amanda will also discuss the lack of support that she has received since Zioniah passed away as she is not even five months into her grieving period.
After an original diagnosis of A Typical Pneumonia after a persistent cough sent Dominique Epthorp's son Ashton to see his doctor in the late summer of 2022, a recheck of his symptoms after Ashton had a shortage of breath after running, showed that his real diagnosis was T Cell Acute Lymphoblastic Leukemia. Ashton has been in his Maintenance program for 8 months and is looking forward to ringing the bell at his hospital, signifying No Evidence of Disease on September 9th.
Nora Schmidt noticed that her daughter Maddie's right eye was crossing inward, one day after she had gone to her eye doctor for a simple eye appointment in which everything looked fine. This situation, which according to her Eye Doctor and a Pediatric Opthamologist could have been a common condition known as Strabismus, but instead turned out to be DIPG. Nora will talk about Maddie's journey which lasted for just over 10 months before her passing from this Pediatric Brain Cancer on December 31st of 2022.
Amber Friesen was told by her soon to be 10 year old daughter Taylor that she had what looked to be either a lump or a cyst on her right hand. Unfortunately what this turned out to be was the Pediatric Cancer Aveloar Rhabdomyosarcoma. On today's podcast Amber will talk about her beloved daughter who was diagnosed with this cancer in early 2020 and passed away in December of 2021. Amber will also talk about the non-profit TAYLOR'S DREAM that she started to honor the life of Taylor.
Dr. Daniel Morgenstern grew up and was educated in England and went to the University of Cambridge as part of his medical education. In 2016 he moved to Toronto where he became a Staff Oncologist at Sick Kids Hospital in Toronto with his expertise being in the Pediatric Cancer Neuroblastoma. While working diligently on this cancer, Dr. Morgenstern is also involved in drug development in trying to find new novel therapies that will help Pediatric Cancer patients who need new medicines which are less toxic as quickly as possible.
Having a side effect or long term effect after surviving a battle with Pediatric Cancer is not at all surprising. On today's podcast Marta Blanco will talk about her daughter Sofia, who after being diagnosed with Non Hodgkins Lymphoma in 2003 when she was 4 years old, suffered from Heart Failure during her treatment for this form of Pediatric Cancer. Although Sofia had recovered from her Lymphoma battle and managed to have a good quality of life for a number of years, she passed away from this Heart Failure side effect in April of 2012, just one month after her 13th birthday.
Kurt Myers and his wife PJ's daughter Ailani was originally diagnosed with Acute Lymphoblastic Leukemia when she was 2 years old in 2019. Because of a genetic mutation, her diagnosis was changed several weeks into her treatment to ALL which was determined to be high risk with a poor prognosis. Kurt and PJ will talk about what Ailani has had to go through including many relapses, 2 Bone Marrow Transplants, and treatment at some of the leading Pediatric Cancer hospitals in the United States. As 2024 begins, Ailani has suffered another relapse but is living the best life that she possibly can.
Ryan Callahan began his outstanding National Hockey League career with the New York Rangers during the 2006-2007 season, and during the 2014 season went to the Tampa Bay Lightning. While in Tampa, he and his wife Kyla started the Ryan Callahan Foundation to help Pediatric Cancer patients and their families get as much enjoyment during their cancer journey's as possible. Kyla will talk about their Foundation with incredible passion on today's podcast.
Before walking upstairs in her home in 2009, 13 year old Anna Yan Ji slipped and fell and afterwards, said that she felt funny. Shortly thereafter it was discovered that Anna had suffered a seizure and this seizure led to a diagnosis of the very rare Pediatric Brian Cancer, Gliomatosis Cerebri . Anna's parents, Kathy and Joe Arabia will talk about Anna and her cancer diagnosis, which lasted for 3 1/2 years before her eventual passing. They will also talk about their AYJ Fund which will be celebrating its 10th anniversary on February 10th, and is doing great work to fund groundbreaking research to help future children and adolescents who are diagnosed with this form of Brain Cancer.
Brittney Bliss was diagnosed with Embryonal Rhabdomyosarcoma just after her 4th birthday in 2022. Her mother Elena will talk about the 13 month battle in which her beloved daughter never really caught a break, despite the fact that she was treated at some of the leading Pediatric Cancer hospitals in the country including Boston Children's Hospital and Children's Hospital of Philadelphia. Brittney passed away from this form of Pediatric Cancer on June 6th of 2023, just 10 days after her 5th birthday.
Lysi Kinyon was diagnosed with Neuroblastoma before she was even born and Sarah Ross McHenry was diagnosed with this form of Pediatric Cancer when she was 8 years old. Lysi and Sarah will talk about the many long term side effects that both of them have had to experience for more than 20 years and how, even with all of their difficulties, they have been able to live their best lives possible, which includes giving back to others.
Martine Kalbhenn was 3000 miles away at her family's home in Kennebunk, Maine when her 5 year old son Jackson tripped and fell while running and hurt his leg badly while visiting his Grandmother in California. Martine received a phone call from her husband Kyle and made plans to immediately travel out west. Jackson's fall was far from normal, as he was diagnosed with the Bone Cancer Ewings Sarcoma. Martine will talk about that time period in which his fall occurred in late July, and how he is doing now during his treatment protocol, taking place at the Barbara Bush Children's Hospital, located at the Maine Medical Center in Portland, Maine.
Nick Gaspar was a 14 year old 8th grader who became lethargic and his normally upbeat personality became withdrawn in May of 2021. He also developed a tremor in his left hand and after being taken to his pediatrician, was quite quickly transported to Boston Children's Hospital where he was diagnosed with a Mixed Germ Cell Brain Tumor. Nick's mother Jen will talk about the next 2 years of Nick's life, which originally showed promise after his tumor was completely removed during a 12 hour Craniotomy. Unfortunately in the months ahead , Nick's condition went downhill, and he passed away on May 19th of 2023.
Sophia Takla's 8 year old cousin Tristan passed away from Medulloblastoma 15 years ago when Sophia was 8 years old, as was Tristan. Sophia will talk about that period of time and what she has been doing as a Pediatric Cancer advocate since his Tristan's passing and will continue to do for many years to come. Sophia will also discuss her being crowned Miss Oregon in June of 2022 and her top 10 finish in the Miss America Pageant in 2023. Sophia has accomplished so much in her life already and at 23 years old, has an incredibly promising future ahead .
Max Pound was an outstanding young athlete and full of life until 2020 when his mother Carol, who in her professional life was involved with early oncology drug development, noticed some concerning health signs and took Max to get them checked out.
Shortly after that Max was diagnosed with Diffuse Hemispheric Glioma, a very rare form of Pediatric Brain Cancer at the age of 10. Through much of 2021 Max was feeling well enough to return to his athletic endeavors and to school when possible, but at the end of 2021 Max had a relapse, struggled through 2022 , and passed away on January 11th of 2023.
Carol will talk about her beloved son and the Max Pound Foundation which her family started to honor Max's memory in 2023.
After returning from a trip to the Zoo in 2019 with her then 5 year old son Sawyer and her 2 1/2 year old daughter Isla , Autumn Gentry noticed a number of freckles on Isla's body. After being reassured by Isla's Pediatrician that she was a "healthy child", her doctor ordered blood tests just to be sure that everything was okay, which it was not. Isla was quickly diagnosed with the Pediatric Blood Cancer Acute Myeloid Leukemia. After a relapse 5 month's after her diagnosis, Isla was preparing for a Bone Marrow Transplant which never happened and then a clinical trial which did not work. Almost nothing went right for Isla during her treatment and she passed away in August of 2020.
High School senior Dustin Liang was diagnosed with T Cell Acute Lymphoblastic Leukemia on June 4th of this year and in response to that his friend Amine Bentahar, a sophomore at his high school, started the Dustin Strong organization in honor of Dustin's Pediatric Cancer battle. Dustin will talk about his treatment and how he is doing and Amine will discuss what has already happened with the organization and the plans that he has for it going forward.
Grainne Owen and her husband Clay started their Curing Kids Cancer Non-Profit after their son Killian passed away from Acute Lymphoblastic Leukemia in 2003. Grainne will talk about her beloved son and his fight against this most common form of Pediatric Cancer, and her Non-Profit which has raised $27 million dollars to help these kids and their families, with many more dollars to be raised in the coming years.
The Leukemia and Lymphoma Society has been the largest Non-Profit fundraiser of Blood Cancer research for nearly 75 years. On today's podcast I will speak with Stacy Kreizman who is the Senior Manager of Patient and Community Outreach for this Non-Profit in New Jersey and Northeastern Pennsylvania. Stacy will talk about her role in this non profit in which she truly is a Jack Of All Trades, and will also discuss the $175 million dollar new initiative that the Leukemia and Lymphoma Society is unfolding to help in the cause of Pediatric Blood Cancer.
When Colleen Tanaka's then 8 year old son Tenzin was not feeling well and had been showing troubling symptoms in the spring of 2022, Colleen took him to his Pediatrician , an Ear Nose and Throat Specialist, an Allergist , and to an Emergency room Doctor with no blood work being taken. Finally, Tenzin went to Stony Brook Hospital in New York, blood work was taken, and he was diagnosed with T Cell Acute Lymphoblastic Leukemia in June of 2022. Colleen will talk about Tenzin's 17 month treatment which has shown that he is now cancer free, and will talk about her advocacy work that began at a School Board meeting in February of 2023, and has now expanded to the point that Collen has her own blog and support group which goes under the heading of leukemiamom.com.
Becoming a Nurse and caring for Pediatric Cancer patients is a very difficult job in itself and becoming a nurse and working with DIPG patients and their families makes their jobs only more difficult. On today's podcast Nurse Navigators Leslie Jared and Lauren Kirages will talk about their experiences working with these kids who have been diagnosed with this type of Brain Cancer which, as we know, still does not have any survivors after a certain time period. Leslie and Lauren will speak very passionately about the love that they have for the kids and families that they work with, and the passion that they have for their roles in this DIPG fight.
After being diagnosed with Medulloblastoma in March of 2021, Breanna and Matt Meo's 8 year old son Landon was admitted to St. Jude Children's Research Hospital to begin a clinical trial which was working well until Landon relapsed in March of 2022. Breanna and Matt will talk about the difficult treatment that Landon went through as well as some good times, especially in the first few months of 2022 when he was able to attend 3 Sacramento Kings basketball games, meet the players from that team, and meet Lebron James on April 7th, 8 months before his December 17th 2022 passing.
Grace Wethor began her life as a self described "Super Active Child" as she was a Dancer, a member of a World Championship Synchronized Figure Skating Team at the age of 9, then joining the Circus when she was 11, hanging by her toes 30 feet in the air on a trapeze. When she was 13 years old, Grace was diagnosed with a Brain Stem Glioma which is a form of Pediatric Brain Cancer which looks a great deal like DIPG but has never been diagnosed as such. Grace was diagnosed on January 9th of 2015 and now nearly 9 years later has been going strong professionally as she is an Award Winning Film Director, and Actress, a best Selling Author, and the CEO of her own company known as GRAE Entertainment. Grace is also a very public advocate for the cause of Pediatric Brain Cancer as she has made it a mission to help as many of her peers with different forms of Brain Cancer as she can.
For the past 22 years Sandy Hecker has been working with the Food and Drug Administration to help in the fight against both Adult and Pediatric Cancer. Sandy will talk about her positive thoughts involving this large organization and that they are committed to helping in every way possible to helping these families deal with such a difficult problem. Sandy will talk about what this organization faces as far as obstacles are concerned, their involvement in clinical trials, and their work in approving research which hopefully leads to productive new medicines in this fight. Sandy will also discuss her trip to Curefest back in September and the eye opening experience that it was for her.
19 year old Grace Bronleewe is a very accomplished singer/songwriter from Nashville, Tennessee. Known as GREYLEE on all of her musical platforms, Grace will talk about her very strong connection to Pediatric Cancer, as she lost friends Treven in May of 2020, and Noah in January of 2021 to Leukemia and Brain Cancer respectively. Grace will talk in depth about Treven and Noah and her song BRAVE that she wrote at the request of her friend Noah's family, and performed beautifully before a standing room only crowd at Curefest in September.
Amanda DeCicco's son Jayden was born while Amanda was a high school senior. After completing her studies and raising Jayden , he was diagnosed with DIPG at the age of 6. On today's podcast Amanda will talk about what her beloved son went through before his passing in April of 2015, how she turned her grief into becoming a Born Again Christian, writing a book called THE HERO WITHIN, and helping other families who are in their own Pediatric Cancer battles.
Joanne Whall's son Kieran was diagnosed with B Cell Acute Lymphoblastic Leukemia when he was 4 years old this past February. On today's podcast Joanne will talk about what Kieran has been through over the past 8 months, including such difficulties as having a severe allergic reaction to a drug he was taking, and still needing blood thinner shots because of a clot that he developed in his jugular vein. Kieran is 2 months away from approaching the maintenance part of his recovery program, which will take until March of 2025 to complete.
After reading on facebook about a little girl that had a "glow" in her eye which turned out to be eye cancer, Robin Cervantes looked at pictures of her daughter Bella and realized that she had a very similar glow in her right eye. The next morning, Robin began the process that led to Bella, then 2 1/2 years old to the diagnosis of the eye cancer Retinoblastoma. Robin and Bella will both talk about how Bella, now 11 years old, was able to make a very successful recovery from this eye cancer and has started her Brave Bella's Bead Co. in which she makes jewelry with many of the proceeds headed to St Jude's Children's Research Hospital to help in the fight against Pediatric Cancer.
On August 22nd of this year, exactly 8 weeks before today's podcast is being published, 7 year old Ashton Hawkins was diagnosed with the Pediatric Brain Cancer Medulloblastoma. On today's podcast, Ashton's mom Amanda will talk about what Ashton has been through over the past 8 weeks and what challenges that she faces as her treatment protocol is still in its early stages.
Olivia Zhang started her incredible journey in the cancer world back in 6th grade, when first her grandfather and then her 7th grade after school teacher were diagnosed with cancer and passed away. Olivia was very close to both of them and this led to her starting the non-profit CANCER KIDS FIRST as a 14 year old in 2019. Her non-profit is now the largest Youth Led Pediatric Cancer Non-Profit in IN THE WORLD. Cancer Kids First has 30,000 world wide volunteers, has impacted 8000 Pediatric Cancer patients, has partnerships with 69 Pediatric Cancer Hospitals and is involved with 63 countries, many of which have a Pediatric Cancer survival rate of 10 percent. These countries include Bangladesh, Columbia, Honduras, India, Kenya, Mexico, Mongolia, Pakistan, The Philippines, and Ukraine. Olivia is truly an extraordinary young woman who has made and will continue to make an overwhelming positive difference in the lives of so many who need and deserve so much help.
Jordan and Scott Arogeti came up with a method to make it as easy as possible for people who wanted to support those in need to find a simple process to do so. This process is known as SUPPORT NOW, an organization that has been fully open for less than one month. SUPPORT NOW is already getting great feedback from individuals who have used this easy way to give what they can to families and individuals who need whatever help they can get through the kindness of others.
Christie Blankenship and her husband decided to adopt 16 month old Reese in 2017 after she was so abused by biological family members that Reese was unable to to walk, talk, or see. 2 years later Reese was diagnosed with DIPG on May 29th of 2019, and exactly 4 years later on May 29th of this year she passed away from this dreaded form of Pediatric Brain cancer. This is a truly incredible story of a mother who did everything possible to make a life for her daughter that was worth living.
Hannah Gilbert was diagnosed with Acute Lymphoblastic Leukemia when she was 2 years old in January of 2003. On today's podcast, Hannah and her mother Priscilla will talk about what Hannah went through in the early stages of her cancer battle, and how she has been able to lead a healthy and productive life as she graduated from Texas Tech University with a degree in Communications in 2022. It is always great to see a Pediatric Cancer diagnosis be defeated by a patient who is moving on with what will be a successful career and a healthy life, as Hannah is doing.
In December of 2022 10 year old Ramie Darling Jr. was diagnosed with the Pediatric Liver Cancer Hepatoblastoma. HIs father Ramie will talk about his son's diagnosis which occurred in a hospital near their Florida home, but subsequently both father and son moved up to Boston where for the past 8 months Ramie Jr. has undergone a very successful treatment protocol under the direction of Dr. Allison O'Neill at Boston Children's Hospital.
Ramie will talk about his treatment and how well the Darling family, which includes his wife Katie and their 13 and 15 year old daughters, has been treated. Ramie Jr. has spent time at Patriots Training Camp with Quarterback Mac Jones and at Fenway Park with pitcher Garret Whitlock.
Barbara Rios has lived in Puerto Rico for her entire life. On today's podcast Barbara will talk about the nearly 20 years that she has been involved with the American Cancer Society and her work in developing and running many programs for Pediatric Cancer patients and their families in Puerto Rico. Barbara will discuss the difficulties that these patients and families can face because of being far away location wise from the 4 Pediatric Cancer Care hospitals on the Island, but will also discuss some of her successful programs as well as the great individual care that these patients receive.
In July of 2022 Hayley and Justin Dickens came on to my podcast just two months after their daughter Kallie passed away from the Pediatric Brain Cancer Diffuse Midline Glioma. It is now 14 months since they both talked so beautifully about Kallie and on today's podcast Hayley and Justin will speak beautifully once again, detailing how they have been able to handle Kallie's passing and what they have accomplished in keeping her legacy more than alive and at the forefront of their thoughts.
Dr. Cristina Pozo -Kaderman is the Director of the Young Adult Program at the Dana Farber Cancer Institute. This program is focused on finding many different Psychosocial ways to help the "forgotten" cancer victims that are between the ages of 19-40, and make up 80,000 young adults who are diagnosed with some form of cancer each year in the United States.
In January of 2022 14 year old high school freshman Mayah White was diagnosed with Stage 3 Anaplastic Large Cell Lymphoma after feeling exhausted since the previous October, and having lymph nodes pop up in her groin area. Mayah's mother Cailin will talk about the 134 day treatment that Mayah went through before she was told the great news that there was No Evidence Of Disease on June 22nd of last year. Thankfully that is still the case although Mayah still deals with side effects and after effects from her treatment. Cailin will also talk about their 501 C 3 Non Profit- Mayah's Militia which is hosting a Pickleball Tournament this Sunday September 17, as its first fundraiser as an official Non-Profit.
On today's podcast Stacy Sands will talk about her son Hudson, who was 5 years old in October of 2019 when he was diagnosed with DIPG. Despite his diagnosis, Hudson was able to travel to such places as Galveston Texas, San Diego California, and the Missouri Ozark Mountains with his family, before he passed away on December 18th of 2020. Stacey will also discuss the 4 different hospitals that Hudson went to as she and her husband Todd did everything possible to help their beloved son.
Camille Wahl was diagnosed with Osteosarcoma when she was 10 years old in January of 2013. On today's podcast Camille will talk about her amazing journey in which she has relapsed a total of 8 times and is once again doing everything possible to recover from her latest relapse which occurred earlier this year. Through it all, Camille, now a student at Boston University majoring in psychology, has been able to live a most meaningful life . Her life includes cohosting her own podcast with fellow Osteosarcoma survivor Mia Sandino, owning an Etsy Shop, performing in musicals, taking voice lessons, and being a Junior Ambassador for the Non-Profit MIB Agents, which focuses on the very difficult form of bone caner in which Camille and too many others have to deal with.
While looking at colleges with her family at the beginning of her senior year in high school, Dr. Sharon Hammond's daughter Summer noticed a small cyst between her left thumb and finger. Two and a half months later she told her mother that she needed to see a hand specialist as the cyst continued to grow.. The end result became a diagnosis of Rhabdomayosarcoma. Summer was able to attend her first two years of study at Dartmouth College and was even able to go to Buenos Aries to study for 3 months from January to April of 2015. Unfortunately shortly after returning to Dartmouth, Summer found out that her cancer had spread and she passed away on July 20th of that year.
Dr. Hammond will talk about Summer and about the Summer's Way Foundation, the non -profit that she started which is totally involved in trying to fund research and find a cure for this very difficult form of Pediatric Cancer.
After having difficulty controlling the ball during soccer practice and having her leg give out after that, Mina Carrol's 7 year old daughter Philomena was diagnosed with the most dreaded DIPG. During the so called "Honeymoon" period when Philomena was initially feeling well enough after radiation treatment, she and her family were able to travel to Rome to meet the Pope. Unfortunately Philomena's condition worsened after that and she passed away just 10 months after her diagnosis. Mina will also discuss her STORM THE HEAVENS FUND which is doing everything possible to support others in this DIPG fight.
After having difficulty controlling the ball during soccer practice and having her leg give out after that, Mina Carrol's 7 year old daughter Philomena was diagnosed with the most dreaded DIPG. During the so called "Honeymoon" period when Philomena was initially feeling well enough after radiation treatment, she and her family were able to travel to Rome to meet the Pope. Unfortunately Philomena's condition worsened after that and she passed away just 10 months after her diagnosis. Mina will also discuss her STORM THE HEAVENS FUND which is doing everything possible to support others in this DIPG fight.
While on a Ski Trip during her junior year in High School, Amanda Paul began to develop symptoms which eventually led to her diagnosis of Stage 4 Multicellular Hodgkins Lymphoma. Amanda will talk about the journey that she had to go through just to receive this diagnosis and the treatment protocol that she endured. Amanda will also discuss her involvement with the Leukemia and Lymphoma Society and how she initiated fundraisers that raised $64,000 over a 5 month period for this Global Leader in fighting blood cancers. Amanda is now a student at Baylor University and majoring in journalism, with a goal of working for the Leukemia and Lymphoma Society after she graduates.
Don Armstrong worked up to 20 hours each day as he focused his life almost totally on business success. Then in 2005, Don was diagnosed with Acute Myeloid Leukemia. On today's podcast Don will talk about the year of treatment that he went through and how his value system took a 180 degree turn. Since his recovery in 2007, Don has been a strong advocate in the World of Public Speaking and in writing as his book FINISH YOUR RACE that was published in 2017 teaches many important values of what makes a truly successful person. Values such as Relationships, Handling Adversity, Finding Balance, Having the Right Attitude, Setting Goals, and Taking Action on these goals have become Don's message over the past 17 years. Don's journey has been fascinating and it really is a journey of two different lives led by the same person.
After complaining of blinding headaches in early May of 2020, Chelsea Johnson took her 6 year old daughter Ansley to her doctor and shortly thereafter she was diagnosed with the heartless Pediatric Brain cancer DIPG. Chelsea will talk about the 10 month Clinical Trial that Ansley went through at the University of Florida and after being dismissed from the trial, she was then given Natural Remedies which helped to extend her life by a few months, before her passing in July of 2021. Chelsea will talk in detail about her thoughts on Natural Remedies and also will talk about her non-profit ARMY FOR ANSLEY.
After being diagnosed with Neurofibromatosis 1 which can cause tumors to form, Addie Gould was diagnosed with an Optic Pathway Glioma, which is a form of Pediatric Brain Cancer. This caused great damage to Addie's eyesight in her left eye. On today's podcast Addie's mother Jillian will talk about Addie's treatment ordeal which included a 60 week Chemotherapy cycle. Jillian will also discuss this week's Pan Mass Challenge Bicycle event, in which Addie will be the Pedal Partner for Team Kermit, under the captaincy of Steven Branfman, who lost his son Jared to cancer in 2005.
One June 13th of 2020 Summer Stumpf heard the words that no parent should ever hear, namely that her 11 year old son Grayson had DIPG. Over the next 377 days Grayson fought his battle against this dreaded disease before passing away on June 25th of 2021. Summer will talk about her beloved son and how she started her non-profit LIVE GRAY'S WAY which was set up in memory of Grayson and the way he lived his way too short life. This non-profit is helping in the fight against DIPG and Summer spends most of her time on Live Gray's Way and in helping other parents who have been through the same situation as did the Stumpf family.
Acute Lymphoblastic Leukemia is the form of Pediatric Cancer that has the highest cure rate, with its percentage hovering at around 90 percent. Unfortunately these statistics did not help Keaton Barron. On today's podcast Keaton's mother Holly will talk about her son's 5 1/2 year battle against this disease which included 2 relapses before his passing at the age of 8 in May of 2018. Holly will also discuss her Keaton's Kindness Foundation which Keaton himself actually started along with his friend Kay Tanger 4 months before he passed away. The word KINDNESS is such an integral part of Holly and her husband Luke , that they were chosen by Parents Magazine AMERICA'S KINDEST, FAMILY in 2021.
On June 13th of 2020 Summer Stumpf heard the words that no parent should ever hear, namely that her 11 year old son Grayson had DIPG. Over the next 377 days Grayson fought his battle against this dreaded disease before passing away on June 25th of 2021. Summer will talk about her beloved son and how she started her non-profit LIVE GRAY'S WAY, which was set up in memory of Grayson and the way he lived his way too short life. This non-profit has raised 1.6 million dollars to help in the fight against DIPG and Summer spends most of her time on Live Gray's Way and in helping other parents who have been through or are going through the same situation as did the Stumpf family.
After her mother was in hospice care and passed away in 2018, Chandra Heyman decided to start a Non-Profit called TALKING ANGELS. Her non-profit provides Comfort Blankets to both pediatric and older cancer patients as one way to cope with the pain that they go through during their individual treatments. Chandra has distributed 4000 blankets to these patients and hopes to continue to help others who have to go through such a difficult process.
Meg Landry took a simple photograph of her daughter Lyla when she was 18 months old and noticed a yellowish ring around her right eye. Meg took Lyla to her pediatrician and a short time later she was diagnosed with Retinoblastoma. Lyla is now 4 years old and has no evidence of disease. Meg will talk about Lyla, and will also discuss her non-profit ART FOR EYES whose mission is to raise money to make sure that as many kids as possible have the opportunity to purchase a prosthetic eye.
Destiny Flood- De Jesus was an 11 year old middle school student when she failed an eye examination that was give to her at her school. Shortly thereafter, Destiny was diagnosed with the Eye Cancer Retinoblastoma which occurred in her right eye. Destiny will talk about the difficulties that she went through during this period and afterwards, and the emergency reconstructive surgery that she underwent 5 years ago. This surgery brought back memories of her own cancer fight which took place 20 years ago and Destiny then decided to write a book called A LITTLE SUPERHERO FIGHTS CANCER. This book was recently published as Destiny is now taking her place as a Spokeswoman for this difficult form of Pediatric Cancer.
In the late summer of 2019 Molly Oldham had been suffering from migraines, vomiting, and feeling lethargic, but she was still planning on leaving for her Freshman year at the University of North Carolina Greensboro where she was to study Musical Theatre. Unfortunately she was diagnosed with Anaplastic Emendymoma which is a form of Brain Cancer. Since her diagnosis, Molly has had 3 brain surgeries , many radiation treatments, and has suffered from side effects including Grand Mal Seizures. Molly however continues to live her best possible as she has sung the National Anthem twice at at Florida Panthers Hockey Games, performed as a professional in a play, and had her inspiring story told on the View. Molly has also found time to advocate for others in the cause of AYA or Adolescent and Young Adult Cancer.
Amy Samsury's daughter Danielle was diagnosed with High Risk Acute Lymphoblastic Leukemia when she was 7 years old in 2011. Danielle is now 10 years past her successful fight against this Pediatric Blood Cancer and is about to begin her Masters program in Athletic Training at Marshall University. Amy will talk about what her daughter went through including the trauma of losing her hair 5 times during treatment. Amy will also discuss her own role at the Rally Foundation and how important this Foundation has been to both her and Danielle.
On today's podcast Robin French, who is the Operations and Project Manager for the Morgan Adams Foundation will talk about how her now 21 year old son Will's successful battle against a form of Pediatric Brain Cancer, which he was diagnosed with when he was 2 years old, led her to a career involvement in the cause of Pediatric Cancer. Robin will talk about Will's fight , and the Foundation which looks for Under the Radar and High Risk High Reward Cancers to donate their proceeds to. The Morgan Adams Foundation was founded more than 20 years ago, after Joan Slaughter and her late husband Steven Adams lost their 6 year old daughter Morgan to her 11 month battle with her own form. of Pediatric Brain Cancer
The Brain Tumor Craniopharyngioma that Logan Setzer was diagnosed with as a 10 year old in 2007 was benign but the side effects and after effects that Logan has suffered with for the past 16 years are almost impossible to fathom. On today's podcast Logan's mother Tiffany will talk about how Logan has had to deal with obstacles such as being legally blind, having a personality change, having a biological eating disorder, and being in almost constant pain, which are just some of the many difficulties that Logan goes through on a daily basis. With everything that has been thrown at Logan, it is no wonder that Tiffany and her husband Jeff are finally planning to take their very first vacation in 16 years, since the time of Logan's diagnosis.
Cheryl Adams saw a small mole on her son Graham's left arm when he was 9 years old in 2013. The mole was removed but Graham's problems had just started. 6 months later he was diagnosed with Pediatric Melanoma. Graham underwent 40 surgeries but did not sit idly by while hospitalized. He and others designed rubber bracelets to highlight his fight and 100,000 of them were sold. Graham's story caught the attention of the Today Show, the Ellen Generous Show , the Obama Family, and Kobe Bryant, who all lent a helping hand. Graham is now 19 years old, has not had the opportunity to live a normal life and is in pain quite often. This is the result of a form of pediatric cancer that is not well known and that there really is no cure for.
After experiencing headaches, tiredness, and swollen lymph nodes, Laura Davis took her 14 year old son Cole to the doctor in January of 2020 where the thought was that he might have had Mononucleosis. Instead, after a test showed that Cole's white blood cell count was over 300,000, his diagnosis came back as T Cell Acute Lymphoblastic Leukemia. Laura will talk about the 2 and a half year treatment that Cole endured, including a critical shortage of the drug Erwinaze that Cole needed which finally was found and provided by Angels For Change Director Laura Bray.
Cole is now a high school senior at the age of 17, he has been cancer free for 9 1/2 months, and is working hard to get ready for the upcoming high school football season.
After his son Pablo died from Bilateral Wilms Tumor 6 days after his 6th birthday in 2008, Jeff Castelaz decided to ride his bicycle from Florida to California to honor the memory of his son. That ride raised $250,000 which was the seed money used to start the Pavlove Foundation. On today's podcast Kirsten Lyman who is the foundation's Chief Executive Officer, and Lauren Alfiero who is the Marketing Director will talk about this foundation which has dual missions of teaching photography to Pediatric Cancer patients and raising money to help underfunded cancers. Their primary objective of course is to help these kids who are so deserving of support.
In 1977, Linda Park's son and Dana - Sue Crews' younger brother Luke was diagnosed with Histiocytosis X when he was 18 months old, was told that he would not survive, and that the end would be quick and tragic. On today's podcast Linda and Dana-Sue will talk about Luke and how he recovered from his blood cancer diagnosis which is now known as Langerhans Cell Histiocytosis and is thriving at the age of 47. They will also talk about the book that Linda wrote called BRAVE COURAGEOUS BOLD , LUKE AND HIS BIG BATTLE and the work that Dana- Sue has done for the cause of Pediatric Cancer which was inspired by Luke's fight, including starting the Bell Asteri Publishing company which publishes books concerning individual Pediatric Cancer stories.
Both Deanna Fournier and Ana Valdez suffered from the blood cancer Langerhans Cell Histiocytosis but at very different stages in their lives. Deanna , now the Director of the Histiocytosis Association, was diagnosed when she was 6 years old and Ana was diagnosed 3 years after her symptoms began to appear during the final trimester of her pregnancy.
Both Deanna and Ana will talk about their involvement as they help other people who have been diagnosed with a form of cancer that is not as well known as many other forms of this disease.
After experiencing headaches and vomiting through much of the summer in 2019, Lori Evans took her then 12 year old son Noah to the doctor and eventually to a Neurologist, who ordered an MRI which showed that Noah had the Pediatric Brain Cancer Diffuse Midline Glioma. After chemotherapy and radiation treatments, Noah was enrolled in the Clinical Trial ONC 201 which eventually stopped working and in January of 2021, Noah passed away after a gallant battle against this terrible disease.
Lori will talk about her beloved son and about the Noah Brave Foundation, which helps families both monetarily and emotionally who are going through a similar situation to what the Evans family experienced.
Zach Cook's younger brother Caleb was diagnosed with Acute Lymphoblastic Leukemia during the beginning of his kindergarten year in 2013. On today's podcast Zach will talk about the past 10 years which have been a rollercoaster ride which Zach has negotiated successfully as he is getting ready for his freshman year in college. He will talk about the help that he gave to Caleb and his family , his own difficulties that he has had to overcome, and the help that he has given and is giving to many others who are fighting their own Pediatric Cancer battles or dealing with other issues.
Alexandra Paterson was named the Director of Brand Communications for the V Foundation in January of 2023. On today's podcast she will talk about this Foundation that was started in 1993 by former North Carolina State Basketball Coach Jim Valvano and ESPN during Jim's cancer battle. The V Foundation has awarded more than 300 million dollars to cover nearly 1200 research grants in the past 30 years and, with the help of legendary College Basketball guru Dick Vitale, has also made a big impact for the cause of Pediatric Cancer.
Michael Cramer was diagnosed with Hepatosplenic T Cell Lymphoma in July of 2020. Michael and his mother Ashlee will discuss the very difficult nearly 2 year treatment protocol that he had to go through in which Michael finally began to recover and feel better beginning in April of 2022. Through it all Michael and Ashlee started a podcast called Michael And Mom Talk Cancer, and used their social media platform to talk about his cancer and to help others, including creating and publishing Rap Videos on You Tube.
The Make a Wish Foundation is one of the most important and iconic organizations for children and adolescents who are undergoing treatment for a variety of diseases, with many of them battling Pediatric Cancer. On todays podcast Julie Abel and Amy Carroll from Make A Wish will talk about the innerworkings of an organization that is celebrating its 40th anniversary this year and is about to grant its 10,000th wish to a deserving child or adolescent. Courtney and her son Colby will discuss the more than 800 day treatment regiment that Colby has completed for Pediatric Lymphoma and what the Make a Wish Foundation has meant to them.
On today's podcast Julie Frampton will give great information on Melanoma , which is the most deadly form of skin cancer. Julie was diagnosed with Melanoma 12 years ago when she was 34 years old, had another diagnosis of it 2 years later but has had had No Evidence of Disease since.
What is not as well known is the fact that this form of cancer can and does effect both children and adolescents. Julie will give a detailed tutorial on the dangers of Melanoma for the youngest population, and how she has been a strong advocate in trying to spread the word about what needs to be done to deal with a form of cancer which she believes there is no real cure for.
For the past 35 years the RELAY FOR LIFE, a fundraiser that has raised more than 6.5 billion dollars for cancer research put on by the American Cancer Society has played a major role in the fight against cancer. On today's podcast Elenna Peroni a senior at Algonquin Regional High School in Northboro , Massachusetts will talk about this event which she organized in her high school, and that giving back to others plays such an important role in her life.
On today's podcast Courtney Mount will talk about her daughter Millie who was diagnosed with Neuroblastoma when she was two years old in 2018 and passed away during Covid. Courtney will talk about Millie's treatment of chemotherapy and then immunotherapy which never really helped, and the difficult last few days before her passing. Courtney will also talk about her book Millie Finds Her Miracle, which focuses on helping children have an easier time facing death, and how we can decide to teach children healthy ways to cope with loss.
Kelli Ritschel Boehle's son Nick passed away from Synovial Sarcoma in March of 2012. During his cancer battle which lasted for 3 1/2 years, Nick was undergoing a clinical trial at the National Institute of Health when he met a young man named Nate. Nick was just young enough after he was diagnosed to be able to take advantage of the Make A Wish Foundation who granted he and his family a trip to Hawaii but Nate was too old to be given a similar opportunity. On today's podcast, Kelli will talk about how upset Nick was about Nate and asked his mother if she could help him in any way. .
After Nick passed away, not only did Kelli help Nate, but she is now helping many other cancer patients who range in age from 18-24 by starting the Nickolas Ritschel Foundation which grants wishes to this age group, in similar fashion to what the Make A Wish Foundation has been doing for many many years.
Leeanne West became the President of the International Children Advisory Network in 2018. This non-profit has 36 chapters in the United States, Canada, and Africa and its focus is to help empower children, adolescents, and young adults to make their own decisions concerning their individual health care battles. These chapters all have a Youth Council, a Young Professionals Group, a Siblings Group, and a Parents Group. The chapters are associated with hospitals near where they are located, and are very supportive of the goal in helping these patients gain the knowledge and experience that they will need as they try and control as many of the decisions that have to be made in their individual health situations. Many of these situations involve Pediatric Cancer.
Brandi Lee Sawyer's son Finn was diagnosed with Rhabdomayosarcoma in 2016 when he was 18 months old and after a nearly 2 and a half year battle, passed away on December 2nd of 2018. Brandi Lee will talk about her beloved Finn on today's podcast and will also talk about the great advocacy work that she has been doing since his passing. Now the Director of Patient Advocacy and Engagement for the Shepherd Foundation which focuses on the rarest of cancers, Brandi Lee has been focusing on legislation involving Genomic Sequencing, which gives these kids and their families help in figuring out more precise detail about their individual cancers, which will lead to better overall treatment.
After doing both his residency and post doctorate at Dana Farber and Boston Children's Hospital and spending a number of years working in one of the best Pediatric Cancer Hospitals in the Country, Adam Durbin moved to Memphis and to another great facility in St. Jude Children's Research Hospital 2 years ago to continue his more than blossoming career in Pediatric Cancer. Focusing on Neuroblastoma, Osteosarcoma , and Rhabdomayosarcoma, Dr. Durbin will talk about his Durbin lab, and the many projects that he and his colleagues are working on to improve the lives of these kids who deserve and need so much help.
After watching her older brother successfully battle Leukemia as a teenager, Jen Costa decided early on that she wanted to be a Pediatric Oncology Nurse. On today's podcast, Jen will talk about her nearly 20 year career that she has spent working with patients suffering from Pediatric Cancer at the Dana Farber Cancer Institute, as well as many other parts of nursing that she has been adding to her resume. One of Jen's major objectives is to work on a study that involves interviewing both parents of pediatric cancer patients and pediatric oncology nurses. If anyone is interested in participating in Jen's study, then please contact her at jennifer.costa@umassmed.edu.
Jen's website concerning this study is www.parentnurserelationships.wordpress.com
On today's podcast Dr. Elias Sayour will talk about his goals to help in the fight to cure the most aggressive forms of Pediatric Brain Cancer. Dr. Sayour will discuss some of the most important topics in this fight including overcoming the Blood Brain Barrier , the dynamics of Brain Cancers as they respond to treatment, how Immunotherapy can be such an important addition to help win these battles, and the optimism that he shares as to the future for these kids who are dealing with such an unfair situation.
Esther Earl was diagnosed with Thyroid cancer at the age of 11 while living in France. On today's podcast her mother Lori will discuss moving their family of 7 to the Boston area so that Esther could receive more advanced treatment at The Dana Farber Cancer Institute and Boston Children's Hospital. Esther's family was told that her cancer was incurable and she passed away on August 25th, 2010 when she was 16 years old.
During her cancer battle Ester became an internet sensation by creating a You Tube Channel called Cookie Monster 4 and creating many videos for her peers to see. After her passing Esther's journals were made into a New York Times Best Seller called THIS STAR WON'T GO OUT : THE LIFE AND WORDS OF ESTHER EARL, and a highly acclaimed novel written by John Green and a subsequent movie called THE FAULT IN OUR STARS were inspired by Esther's amazing life.
On March 2nd of 2022, 22 year old Joe Thompson was diagnosed with DIPG , after his first diagnosis of Vertigo turned out not to be the case. Joe will talk about how the past 14 months have been as from the beginning he has looked at his situation in the most positive light possible. Joe has turned his focus which after graduating from the University of Alabama was on his chosen career path, to one that concentrates on serving others.
After running a low grade fever for over a week that was thought to be a virus, Stephanie Yost Was diagnosed with Acute Myeloid Leukemia at the age of 14 in 2013. Stephanie will talk about her 3 Chemotherapy treatments, her Stem Cell Transplant, and her decision to become a Child Life Specialist on today's podcast.
Ava Blaser was 3 years old when she was diagnosed with Stage 5 Bilateral Wilms Tumor in 2011. Her sister Emma, who is 6 years older than Ava will talk about her sister's ultimately successful fight against this form of Pediatric Cancer in which Ava relapsed when she was 10, but has now been cancer free for more than 4 years.
Emma took it upon herself at 16 years old when Ava relapsed to become a passionate and compassionate advocate for the cause of Wilms Tumor and Pediatric Cancer as Ava's sibling. Emma is now a spokeswoman for the Arms Wide Open Childhood Cancer Foundation and has spread her message to many siblings who have gone through what Emma and Ava have gone through together.
After feeling listless , having little appetite, and experiencing arm pain, 2 year old Grant Gossling was diagnosed with Stage 4 Neuroblastoma in June of 2014. On today's podcast, Michael and June Gossling will talk about their beloved son who fought a 22 month battle against this form of Pediatric Cancer before passing away on March 28th of 2016. The Gossling's will also discuss their major focus on Pediatric Cancer advocacy, aligning themselves with the Rally Foundation and the company Oncoheroes Biosciences, as through their Grant Grace Foundation they wanted to help fund an organization that wants to have cutting edge medicines at the bedsides of these kids as quickly as humanly possible.
Terry Cechin is the Founder, President and Chief Operating Officer of the Desi Strong Foundation. Terry started this foundation in honor of his daughter Desi who passed away from Stage 4 High Risk Neuroblastoma in March of 2016 at the age of 6. Terry will be joined on the podcast by Jessica McWhirter who is the Vice President of the Foundation. This foundation focuses on providing dolls to Pediatric Cancer patients who love them for their companionship and for the therapeutic tools that they provide.
Nicole de Lara Puente has been the Chief Executive Officer of the Live Like Bella Foundation since 2017. This foundation was started in honor of Bella Rodriguez- Torres, who passed away in March of 2017 after a 6 year fight with Rhadbdomayosarcoma. Nicole will talk about Bella and this foundation, which in conjunction with the State of Florida started the Live Like Bella Pediatric Cancer Initiative, which has now raised over 30 million dollars, and has funded 58 multi centered clinical trials.
As the Housing Director of the Ronald McDonald House in Albany New York, Debbie Ross has greeted more than 20,000 families as they begin their stay at this home away from home while their children receive treatment at the Millie Duker Children's Hospital at Albany Medical. Debbie will talk about her career which has lasted over 40 years , making her the longest serving housing director of this "House That Love Built". When Debbie began her career in 1982, 35 Ronald McDonald houses had been built and now there are 381 of these, spread out over 45 countries.
After John and Shannon Sorensen noticed that their son Gabe's eyes were pointing inward, they took him to an Opthamologist and shortly thereafter he was at St, Jude Children's Research Hospital after he was diagnosed with the very rare Pediatric Brain Cancer Pineal Parenchymal Tumor Of Intermediate Differentation. John and Shannon will talk about their son's ordeal which began in January of 2021 and how he is doing now on today's podcast.
They will also talk about some of the Psycho-Social issues that have affected their family, which includes two older sons.
Keith and Brooke Desserich's daughter Elena passed away from DIPG after a less than 9 month fight against a Pediatric Brain cancer which has no long term survivor's. Keith will talk about Elena and her fight and THE CURE STARTS NOW Foundation which he and Brooke founded in 2007. This foundation has a mission to cure ALL Cancers and he pledges to stay with the foundation until his goal of ending Pediatric Cancer is completed. Keith has been at the forefront of research and commitment to trying to end DIPG for the past 15 years, which he and others believe is a key to accomplishing what he calls the Home Run Cure.
Megan Fonte's son Jake was diagnosed with Acute Lymphoblastic Leukemia just before his 3rd birthday in March of 2004 and passed away in January of 2008, after a final relapse on Halloween in 2007 at the age of 6. Megan will talk about her beloved son and will also talk about the online grief group that she organized for parents who have also lost a child to cancer. This group is called PARENTS WHO HAVE LOST CHILDREN TO CANCER and now has over 1600 members who can relate and find comfort in talking to other parents who have suffered the same devastating blow.
As the Executive Director of the Children's Oncology Camping Association, Jennifer Amundsen oversees 122 summer camps for children battling with some form of Pediatric Cancer. This translates into about 30,000 campers each summer spread out over the United States and Canada. Jennifer will talk about her role overseeing these camps and Ryan Campbell will talk about Happiness is Camping. Ryan is a 3rd generation director of this camp which was started by his grandfather in 1982. Ryan is in charge of approximately 250 kids for a 4 week time period each summer and will talk about the life changing experience that these Pediatric Cancer fighters are able to enjoy each July.
The Focused Ultrasound Foundation has designed a novel approach in trying to help patients who have a myriad of illnesses and diseases , including Pediatric Cancer. On today's podcast Dr. Lauren Powlovich who is the Associate Medical Director of the Foundation will talk about the highlights of what they do, including their most important approach which is to use non invasive technology. As they work on a number of Pediatric Cancers , they also hope to use less and less chemotherapy and radiation, which will help Pediatric Cancer survivors to have less trouble with the side effects that almost all of these kids have to deal with later in life.
Jenny Olson's son Will was born 2 months early in January of 2008 and spent his first 61 days in a Newborn ICU Unit. 2 years later, he was diagnosed with Stage 3 Hepatoblastoma and went through a nine month treatment protocol. Will is now 15 years old, as he has been cancer free for over 12 years. During Will's battle, Jenny decided to pursue a career in public speaking and becoming an advocate for pediatric cancer patients and their families, and she will tall about the many lessons that she has learned over the years.
Lauren Hill began to experience dizziness while practicing with her High School Basketball team before her senior season began in 2013. Shortly thereafter, Lauren was diagnosed with DIPG. On today's podcast, her mother Lisa will talk about Lauren's amazing journey which saw Lauren continuing to play during her senior season. Already accepted to attend Mt. St. Joseph's college and play basketball there, Lauren was determined to both go to school and play. . As her conditioned worsened in the fall of 2014, Lauren stated that her goal was to make one basket for her team during her freshman season.
Her hopes came to fruition on November 2nd of that year, as the NCAA moved up their game against Hiram College 2 weeks and the game was moved to Xavier University as Lauren's story went viral. Xavier's arena held 10,200 people and all of the tickets were sold within an hour.
17 seconds into the game, Lauren took a pass , shot a layup, and it went in, electrifying both the crowd and the world. Lauren passed away on April 10th of 2015, but not before she developed a legacy that will last forever.
Lisa will detail Lauren's journey eloquently, and talk about some of the 51 awards she won, both during her life and in the years after it.
Steve Wosahla has spent many years working in major positions in the Health Care industry and since 2020 he has been the CEO of the Non-Profit Children's Cancer Cause. Steve will talk about the policies and legislation that this organization has worked on with various facets of the government to help insure improvements in the lives of Pediatric Cancer patients and their families, and will also talk about more improvements coming in the years ahead.
Max Manyak met 10 year old Ian McMillan who was battling Leukemia through a Notre Dame University program called Fighting Irish Fighting For Life in early 2020. Then Covid hit and while Max was back home in California he communicated with Ian. Upon returning to school he decided to send Max videos of what was happening during the Lacrosse practices that he and his teammates were taking part in. As Team Captain, Max encouraged his teammates to do the same.
Shortly after that, Max created the non profit PEDIATRIC PEP TALK, which now involves all team members of the 26 varsity sports at Notre Dame. The focus of this non profit is for student athletes to create their own videos to these kids suffering from Pediatric Cancer to put a smile on their faces. As of now the University of Arkansas, Indiana University, Northwestern, and Western Kentucky have signed up for this program with many Universities on the horizon. This program is in its infancy and will surely grow by leaps and bounds over the coming years.
https://donorbox.org/healing-smiles-pediatric-peptalk.
Instagram- @pediatric.peptalk
Twitter @PediatricPeptlk
Email max@peptlk.org
Hailey Adams was 3 years old when her older sister Hannah was diagnosed with a Wilms Tumor. Even though she was so young , Hailey remembers watching her older sister go through such a tough but ultimately successful cancer battle. 3 years later at the age of 6, Hailey began her advocacy work for Pediatric Cancer by joining the American Cancer Society's Relay For LIfe.
Now 17 years old and a High School Senior, Hailey has continued her advocacy work on many levels and is also completing her 1 year term as Miss Alabama's Outstanding Teen..
Rachael Walkup is the Resources Project Manager for the Non-Profit LIGHTHOUSE
FAMILY RETREAT. This Non -Profit sets up seaside settings in Florida, Georgia, and North Carolina to invite families dealing with Pediatric Cancer to get away from thinking about Pediatric Cancer for one week to enjoy life. Rachael will talk about these retreats and the many activities that take place. Racheal will also talk about their 3 day Regional Retreats, their One Day Retreats, and their week long Bereavement Retreats.
It is always so inspiring to hear about children who are diagnosed with Pediatric Cancer and they are still able to find it in themselves to give back to others even when undergoing treatment. We will hear a story just like this today as Jessica LaBella will talk about her daughter Anna, who was diagnosed with Ewing's Sarcoma in July of 2019 when she was 9 years old. Anna spent the next 3 years giving back to other Pediatric Cancer patients and started her Anna's Sunflower Warriors Organization which Jessica is now turning into a 501C 3 Non- Profit.
Anna passed away on August 2nd of 2022 at the age of 12, exactly 6 months after this podcast was being published.
Melissa and James Fleming's son Brock was out for a simple walk with James and his sister Jenna on May 4th of 2016 when he fell and hit his head. Brock suffered a severe concussion, one that was so bad that for a brief time he called his mother DAD, and his father, MOM. Everything looked fine in his neurological examination but when Brock smiled, his doctor was concerned and sent him to have an MRI. Unfortunately the MRI showed that Brock had DIPG, the worst form of Pediatric Brain Cancer.
Brock's mom Melissa will talk about Brock and his DIPG Battle which came to an end when he passed away on December 10th of 2016, just 7 months after his original diagnosis.
Lucy Grogan was diagnosed with Acute Myeloid Leukemia when she was 8 years old. By the time she was 11 she decided that she was "Done" with cancer and wanted to do something to help other Pediatric Cancer patients. On today's podcast Executive Director Jackie Walker will talk about the Non-Profit LUCY'S LOVE BUS which Lucy started, 6 months before her passing at the age of 12. This Non-Profit focuses on bringing Integrative Therapies to these kids which bring them comfort as they battle with their individual cancer treatments .
Not only are dogs man's best friends, they also have many common traits when it comes to the subject of cancer. On today's podcast, Dr. Elaine Ostrander will talk about the many similarities that the canine and human specie have when it comes to cancer, including similar forms of cancer, similar treatment protocols that they experience, and similar clinical trails that can work for both species. Dr. Ostrander started the Canine Genome Project and has worked at the National Institute of Health for the past 18 years.
Hannah Adams began her Pediatric Cancer advocacy work when she was just 8 years old, becoming the youngest captain in Florida for the Relay For Life event that is sponsored by the American Cancer Society. That was followed up by her being chosen at the age of 12 to be the National Youth Ambassador for Hyundai Motors for their Hope on Wheels Program. Hannah will talk about her incredible advocacy work for Pediatric Cancer, which was preceded by her own battle with a Wilms Tumor when she was 5 1/2 years old.
Hannah is now a sophomore at the University of Alabama, is the reigning Miss Birmingham, and has previously been voted the outstanding Teen in Florida and the outstanding National Teen by the Miss America organization.
In 2014 after having trouble swallowing, Paoola Sefair was diagnosed with Thyroid Cancer. In 2020 Paoola was diagnosed again with cancer but the good news is that there is now No Evidence Of Disease. Paoola will talk about her cancer battles and will also talk about her Informational App MY CARE CREW that she started along with her friend Aneshka, which allows anyone involved in a cancer battle to communicate with others who are going through this same battle themselves.
After hurting his leg as a sophomore in high school during a school football game in 2010, Ian Lock went to his pediatrician who saw a dark spot on his leg while examining him. This spot turned out to be Osteosarcoma. Ian went through the usual difficult treatment for this most common form of bone cancer, and fortunately he did not suffer a relapse which so many Osteosarcoma patients do.
Ian then decided to become an advocate through the American Cancer Society for Pediatric Cancer while still in high school and then while in college, decided to do research on such pediatric cancers as Hepatoblastoma, Leukemia , and Osteosarcoma.
Ian is now going after his PHD in Molecular Cancer Biology from Duke University and his career path is geared towards in some way helping Pediatric Cancer patients find an easier path to handle their own cancer battles.
Lisa and Mac Tichenors' son Willie lost his battle with Osteosarcoma in 2006. On today's podcast Lisa and Mac will talk about Willie, who lived a life which was full of meaning before he passed away after his first semester at the University of Texas. They started the Quad W Foundation in his honor, and almost all of the Board Members were comprised of Willie's friends, which shows you how important Willie was to them . Many of the original Board Members remain on the board today.
Lisa and Mac will also talk about the Osteosarcoma Institute which they started in 2015, which focuses on the science involved to try and find a much better path for these kids who are diagnosed with such a difficult form of cancer.
Christina Myers and Kevin Reardon's daughter Olivia has been through a myriad of serious health issues in her still very young life. Born 10 1/2 weeks prematurely, she had heart surgery when she was a month old, and then after a healthy period that lasted 3 years, she was diagnosed with Stage 4 Aveolar Rhabdomayosarcoma. Olivia just completed her 51st out of 66 Chemotherapy treatments, has returned to school as a 5th grader, and as 2023 goes on, the hope is that she will return to full health and a peaceful life as soon as possible.
Christina and Kevin will also talk about their Olivia Strong Foundation, which they started in March of 2022 with the hope that it will become an important Regional non-profit to help as many kids and families as possible in the pediatric cancer fight. This non- profit is based in Charlotte, North Carolina.
Dr. Caitlyn Barrett has her PHD in Cancer Biology from Vanderbilt University plus her post doctorate from the University of Pittsburgh. She has taken her education to concentrate on helping many kids who have some form of Pediatric Cancer. On today's podcast, Dr. Barrett will talk about some of the highlights that she has experienced in her prominent roles at Curesearch For Kids Cancer, the Coalition Against Childhood Cancer, and her current role as an Associate Director of the Milken Institute Center For Strategic Philanthropy.
After suffering a seizure while walking in New York City, Adrian Conoboy was diagnosed with Brain Cancer. While in the hospital receiving treatment, he saw many kids who were being treated for Pediatric Cancer. On today's podcast Adrian and his wife Roz will talk about that period of time which began in 2016 when Adrian was 35 years old and working as a Soccer Coach. Seeing these kids deeply affected Adrian and he and Roz started the Non-Profit WE CAN KICK IT for kids ages 6-18 who have in some way been impacted by cancer. This Non- Profit holds soccer clinics in the New York City area and already has helped somewhere between 100-150 kids gain confidence and inspiration during their "New Normal".
After falling on her own several times and experiencing pain in her pinkie finger while playing the violin, Prabal Chakrabarti and Venessa Ruget's daughter Sajni was diagnosed with DIPG at the age of 7. Sajni tried to lead her best life possible for the next 19 months, as she spoke French fluently, rode horses, did karate, and wrote a letter to the White House about Climate Change. As Venessa put it, Sajni wanted to change the world. Sajni took over 100 trips to Boston Children's Hospital and took 10 trips to England as her parents tried to do whatever they could to help their beloved daughter. Unfortunately the viciousness of DIPG took over and she passed away on July 1st of 2017.
Karla and Brian Veal became Foster Parents to Greyson 4 days after he was born. 13 months later Greyson was diagnosed with B Cell Acute Lymphoblastic Leukemia and shortly after that, they decided to adopt him. On today's podcast Karla will talk about the journey that Greyson went through , starting with an almost year long remission but unfortunately ending in April of 2021 , as even Cart T Cell Therapy could not hold off the ravages of the cancer that had spread through his body.
Karla will also talk about the very unique non profit that she and Brian started to honor the far too short life of their beloved Greyson.
Here is the website link to Gold For Grey Ministries which is the name of their Non-Profit. https://goldforgrey.com/
Jennifer Lorencovitz is the Senior Director of Programming and Brian Morello is the Co-Founder and Senior Project manager for the Non- Profit FAMILY REACH. Jennifer and Brian will talk about their Non- Profit, which provides financial assistance and counseling to families which are faced with a cancer diagnosis. Their Non- Profit has been existence for 26 years , has helped 60,000 families including 14,000 last year, and is now making strides in helping families and individuals that are are considered underserved.
Dr. Mariella Filbin was raised just outside of Vienna Austria, where she completed her academic road to becoming a Neurooncologist. Thankfully for the Pediatric Brain Cancer Community in Boston, she came directly from Vienna and began her work at Dana Farber and Boston Children's Hospital. Dr. Filbin is now one of the leading practitioners in her field and will talk about many issues and topics concerning Pediatric Brain Cancer on today's podcast.
Sonya Kulkarni is an incredible young woman and already has produced a list of accomplishments that would make anyone twice her age more than proud. A senior at Bellaire High School in Houston, Texas, Sonya will talk about her amazing life so far which has including publishing 2 books, working as a Cancer Research Assistant at MD Anderson Hospital, starting a Non Profit to help Texas High School students excel on the Texas Educational Standards Exam, and become an important part of the Pediatric Cancer World through Curefest, which is an annual conference held each September in Washington D.C.
Sonya has been recognized by Ms. Magazine, the New York Times, and The PBS News Hour for some of the work that she has done. There will be many more accomplishes from Sonya as she moves on with what will be a life full of helping others.
Lara and Kevin Weberling's son Hans was diagnosed with Stage 4 High Risk Neuroblastoma when he was 3 years old in 2006. On today's podcast Lara and Kevin will talk about the nearly 6 year battle that Hans fought against this form of Pediatric Cancer, before passing away in September of 2012 at the age of 9.
Lara and Kevin went to hospitals in both Texas and California as they did everything possible to help Hans, who had multiple relapses during his fight before his cancer progressed to its final stages in the summer of 2012.
Lara and Kevin will also talk about what they have done to honor the life of Hans and what they hope to do for the cause of Pediatric Cancer and Neuroblastoma in the future.
Angela Lee was playing basketball on her school team as a 13 year old in 1984 when she first noticed swelling near her neck. After her basketball coach told her that the swelling was not normal Angela went to get it checked out and was immediately put into the hospital with an eventual diagnosis of Stage 2 Hodgkins Lymphoma.
Her treatment included 50 radiation sessions and a conclusion from her oncologist that because of this treatment , Angela would have a number of late effects from her cancer battle. This correct statement has been proven out over the years with Angela's battles with her thyroid, blockages in two carotid arteries, women's issues, and a recent Stage 1 Breast Cancer diagnosis.
Through it all Angela has survived quite nicely for the past 38 years, as she originally became her own patient advocate and took that to the next level and beyond as she is now a very active advocate for many patients in the Pediatric Cancer field .
On today's podcast Dr. Lianna Marks will talk about her role as a Pediatric Cancer oncologist who specializes in Lymphoma at the Lucile Packard Children's Hospital at Stanford University. She will specifically discuss the case of 17 year old Mia Gatanaga, a high school honors student who was admitted there in the fall of 2021 after being diagnosed with Primary Mediastinal Large B Cell Lymphoma.
Dr. Marks will talk about Mia who was in the hospital for 4 months while in treatment, how she is doing today, and the bright future that she sees for this form of Pediatric Cancer as far as being able to help these patients lead lives that are full and productive.
Austin Atteberry noticed when a beautiful woman named Sara moved right next door to him in Nashville, Tennessee in 2010. Austin found out that she worked as a Child Life Specialist at Vanderbilt Hospital and Sara found out that he was a Singer- Songwriter. Sara invited Austin to the hospital, told him to bring his guitar and she would introduce him to some of the kids who were patients.
As we turn the clock ahead 12 years Sara and Austin are married, have three children and Austin is the founder and Executive Director of the SING ME A STORY FOUNDATION. Austin will talk about this non-profit, which invites songwriters to read stories written by Pediatric Cancer patients and other kids battling diseases or other maladies, turn these stories into songs free of charge , and distribute them back to these kids, their families, and organizations which bring happiness to these kids who are going through so many difficulties,
Over 5000 songwriters have participated in this venture and 1200 kids have benefitted from it. This Foundation promises even bigger things to come as time goes on.
Jared Branfman was diagnosed with Spinal Cancer in 2003, when he was 21 years old and an Adolescent and Young Adult patient. After a two year battle, his disease spread to his brain and he unfortunately passed away in September of 2005.
On today's podcast, his father Steven will talk about the life that Jared led, which while all too short, was full of accomplishments as he brought joy to so many people
Steven will highlight his family's passion for bicycling which began while Jared was 4 years old. A year before Jared's passing the Branfman's became involved in the Pan Mass Challenge which is a bicycle event that is considered the largest private charity in the world and benefits cancer patients. Since the mid 2000's Team Kermit, which was named for the frog and was Jared's favorite character growing up, has raised over 6 million dollars for research to help so many kids in their individual cancer fights.
A good amount of this 6 million dollars has helped cancers very similar to what Jared had, and that if Jared had the benefit of this research back in the early 2000's, he very well might be alive today.
Brian and Angie Perry's son Ethan was diagnosed with T Cell Lymphoblastic Lymphoma on July 30th of 2020, just after he turned 12 years old. At the very end of 2020 and into 2021 Ethan's cancer, which normally has a very good cure rate, began to spread rapidly and he very unfortunately passed away on March 25th of 2021.
Brian and Angie will talk about their beloved son, the Caring Band that he wore during his treatment, and what they are doing now and will be doing in the future to help other Pediatric Cancer patients and their families.
Kathy Derr lost her son Christopher to an inoperable brain tumor in the early 1990's and in 1995 co-founded the Non-Profit A KID AGAIN. Along with Susan Gilbert whose family joined this non-profit in November of 2020 after Susan's daughter Ali was diagnosed with Leukemia in July of that year, they will talk about the wonderful work that this non profit does, as it has helped more than 200,000 people since its inception, including more than 12,000 in the past year.
This Non-Profit focuses on Family Adventure Days, as it tries to promote normalcy even for a short time to kids who have been diagnosed with a variety of life threatening conditions , including Pediatric Cancer.
When Laura Bray's daughter Abby was undergoing treatment for Acute Lymphoblastic Leukemia she needed a drug called Erwinaze, which was in short supply. Laura came to find out that Pediatric Cancer drug shortages were happening far too many times. She got to work, solved Abby's problem in 10 days and then started her ANGELS FOR CHANGE Non Profit. This Non- Profit has been working over the past several years to help solve this shortage issue as 75 percent of the 20 most common drugs used for Pediatric Cancer patients have been through shortages over the past 5 years. The average time that these drugs are in short supply is 15 months.
Laura has taken on this challenge of basically being one voice to advocate for these kids to solve this more than critical issue with her ANGELS FOR CHANGE organization.
Dr. Archie Bleyer is a well known and highly respected member of the Cancer Community. On today's podcast Dr. Bleyer will talk about his 10 years as the Chair of the Children's Cancer Group in the 1990's and some of the accomplishments that he oversaw during this time period. Dr. Bleyer will then discuss his focus that began over 20 years ago on the issues that the "forgotten" age group of 18-39 Adolescents and Young Adults that are diagnosed with different forms of cancer each year have to deal with. In the United States, there are 90,000 AYA's that fall into this category.
After noticing a weakness on the left side of her face, Tiffany Mcconathy and her husband Jeremy took their 9 month old daughter Nora to her Pediatrician in September of 2021. Nora's 1st diagnosis was Bell's Palsy. Six weeks later as Nora was feeling worse, Nora went back to the doctor and this time they were going to put tubes in her ears.
Tiffany then insisted on an MRI and finally the 3rd of 4th doctor that Tiffany had spoken with agreed to it.
What followed was a diagnosis of a very rare Brain and Spinal Cord tumor called ETMR. 5 months later Nora passed away as the doctors decided not to complete the treatment that she needed to at least give her a fighting chance, because Nora had Covid, with her main symptom being sneezing.
After Nora passed away Tiffany was denied the opportunity to get a Research Autopsy again because of Covid, even though the CDC did not have a policy that an autopsy like this could not be performed.
Nora will also talk about the Nora's Princess Warrior's Foundation that she and Jeremy started to honor the memory of Nora, which is just in its infancy.
Oscar Ortiz's son Sebastian was diagnosed with Rhabdomayosarcoma as a sophomore in high school in October of 2015. On today's podcast, you will hear Oscar talk with much emotion and passion about his son, who fought his battle in every way possible before passing away in December of 2016.
Oscar will talk about the amazing way that Sebastian dealt with his cancer diagnosis with grace and courage, as Sebastian hmself was the one that told his friends and family that he was not going to survive.
Oscar will also discuss the Toyota Tacoma that he bought for Sebastian just weeks before his passing, as well as the Sebastian Strong Foundation that he and his wife Rose started in 2017 to honor the life and memory of their beloved son.
In 2016 shortly before her 7th birthday Ava Girolimetti was diagnosed with Acute Lymphoblastic Leukemia. After a relapse in early January of 2019, she became one of the first patients at Boston Children's Hospital to receive Cart T Cell Therapy. This therapy was thankfully successful and Ava has now been cancer free for 32 months.
Ava's father Marc will talk about Ava's ordeal, and will also talk about Ava's love for the Boston Bruins and the special relationship that developed with the Bruins organization and especially with Bruins Hall of Famer John Bucyk.
Gregory Jacobson is now 5 years past his relapse of the Pediatric Cancer Rhabdomayosarcoma, which he was originally diagnosed with as a senior in high school in 2015. Both Gregory and his mother Susan will talk about what Gregory went through and the great news that he is in the process of completing his Bachelors Degree at Bridgewater State University. They will also discuss the Bubba Strong Charitable Foundation, which has a mission to help the families of children that have been diagnosed with some form of Pediatric Cancer.
The Pediatric Brain Cancer Medullomayoblastoma is not the same cancer as the much more common Medulloblastoma. On today's podcast Michael Pruitt will talk about his son Rylan who was diagnosed with this cancer when he was 5 years old in the spring of 2021, and passed away from it at the age of 6, on March 10th of this year. Before Rylan's diagnosis, only 51 cases of this cancer had been diagnosed with only 1 known survivor.
Michael will also talk about the Rylan Strong Network that he founded, which has a major component of trying to enact legislation that will make certain that insurance companies and the particular hospital that a child is being treated at will pay for treatment, even if an insurance contract has not been signed.
Olivia Lipnicky passed away from a form of Pediatric Brain Cancer when she was 8 years old in November of 2019. On today's podcast Olivia's mother Emma will talk about what Olivia endured after she was diagnosed in early 2019, and the beautiful young girl that she was throughout her way too short time on earth.
While going through treatment in the summer of 2019, Olivia decided to have a clothing drive that raised $10,000 to help all kids who were suffering from Pediatric Cancer. Her inspiration allowed Emma to continue what Olivia started, as she established the Liv Like a Unicorn Non-Profit.
Michael Miller and his family are all too familiar with cancer. Michael's daughter Amy was diagnosed with Acute Lymphoblastic Leukemia when she was 15 years old and suffered a stroke and paralysis during her treatment, and an epileptic seizure many years after treatment which caused a head on car crash. Fortunately, Amy is now doing well, is married and giving back to others in this Pediatric Cancer fight.
Michael is now a two time adult cancer survivor and his wife and Amy's mother Barbara defeated Breast Cancer, a diagnosis that she received when she was only 33.
Michael will discuss his family in today's podcast, and will also give an in depth talk on the non-profit Curesearch, which has done important work on speeding up the process of Clinical Trials, and funding researchers who are concentrating on the most difficult forms of Pediatric Cancer.
On today's podcast Jeff Dannick, who is the Executive Director of the Pozez Jewish Community Center and Joellen Broubalow who is the Camp Director for the Horizon Day Camp located in Northern Virginia, will talk about this camp which offers a 6 week summer program of fun and joy for Pediatric Cancer patients and their siblings.
This camp is under the heading of the Sunrise Association and just completed its first summer. Under the direction of Jeff and Joellen it is well on its way to joining other Horizon Day Camps as being important avenues for many more kids to experience ways in which they can meet and interact with their peers, develop relationships with them, and most importantly, forget for a time about their individual treatment protocols which they have been dealing with.
Hepatoblastoma is the most common form of Pediatric Liver Cancer. On today's podcast, Dr. Allison O'Neil who is the Director of the Liver Tumor program at the Dana Farber Cancer Institute and Doctor's Pei Wang and Nicole Nunez from Eureka Therapeutics will give expert tutorials from the medical side about this rare form of pediatric cancer.
From the family side we will hear from Christina and Cody Stiverson and Kathy and Ben Braden who will talk about their respective daughters Adelaide and Avery, who both were diagnosed with this disease.
On today's podcast Tara Simkins will talk about her son Brennan who was diagnosed with Acute Myeloid Leukemia in early 2009. What happened from there turned out to be one of the most memorable stories in Pediatric Cancer as Brennan survived 4 Bone Marrow Transplants in 18 months. After his first bone marrow transplant Brennan relapsed, and his family was told that they should consider putting Brennan in hospice care as his doctors were not expecting him to survive. Later on in his treatment , his doctors gave him a less than 1 percent chance of survival.
But survive he did.
Brennan is now 21 years old and is a student at the College of Charleston's Reach program in which he has a keen interest in politics. His health is good enough so that he is able to lead a successful and meaningful life as he looks towards a promising future.
On today's podcast Deana Cavan will talk about her beloved son Everett, known as Rett, who passed away on February 22nd 2015 after his Rhabdoid Tumor that was discovered in his liver in October of 2014 had spread to his lungs. Rett's passing came just 5 days before he was to turn 10 months old.
Deana will also discuss her non profit Retts Roost, which she and her husband Jim started just months after Rett passed away. This non-profit features both Bereaved Family Retreats in which EMPATHY is the main focus as well as Survivor Family Retreats in which the main focus is on the word JOYFUL.
When Eric Rodriguez was 15 years old, he was diagnosed with an Optic Glioma. A few years later, he developed lesions in his mouth which turned into Squamous Cell Carcinoma, a cancer that was found in his head and neck. Eric was able to go into remission for 13 years, but then his cancer returned and he passed away on December 29th of 2021.
Eric's mother Anita will talk about the life that Eric led , the impact that he had on others, and the legacy that he left behind. She will also discuss the Boston Marathon Jimmy Fund Walk, which is the largest participatory event that the Jimmy Fund sponsors. This event will take place this Sunday October 2nd and Anita, family members, and friends, will be walking together as members of BEYOND CANCER to raise money in honor and memory of Eric.
When Erin Stern was a teenager in San Diego, she worked one summer at a camp for Pediatric Cancer patients. Later, she went to Harvard University where she received her PHD in Cancer Biology. While there, she decided to start her own summer camp which she named Camp Casco. This camp welcomes children and adolescents ages 7-17 to come for one week during the summer to enjoy all of the activities, meet new friends, and most importantly, be able to spend time having fun and not thinking about all of the protocols that they have to go through while fighting their individual cancer battles.
Back in 2012 Leslee Hacker's daughter Lauren was diagnosed with Acute Myeloid Leukemia. On today's podcast Leslee will talk about the very difficult treatment that Lauren went through at that time , resulting in her getting into remission for 3 years. Then on the night of Lauren's 14th birthday party in 2016, Leslee received the dreaded call that Lauren had relapsed, this time with a myeloid sarcoma in her leg.
After surgery and more chemotherapy , Lauren left the hospital in July of 2016 and has been cancer free for the last 6 years.
Leslee will also talk about her non profit Lolo's Angels which in its infancy included a meeting with Taylor Swift and Joe Biden. Her non profit has done a great deal to help Pediatric Cancer patients who have suffered from various forms of this disease.
Melissa Wilson started her career as a News Anchor in 2000 and has been at Fox 26 in Houston , Texas for the past 20 years, where she serves as both a News Anchor and Medical Reporter. Melissa is a many time award winner including receiving multiple Emmy's.
Melissa is also the mother of 15 year old Caleb, who is now a long term survivor after his battle with Acute Lymphoblastic Leukemia which he was diagnosed with as a 6 year old in 2013.
On today's podcast Melissa will discuss both of of her roles as a very well known media personality and mother, who was able to juggle both of these roles to the point where she kept working during Caleb's ordeal, and only missed one of his chemotherapy treatments.
Adam Lareau is the Founder of the non profit One Summit and Dianne Lynch is its Executive Director. On today's podcast, they will talk about this amazing organization, which pairs up Navy Seal Officers with Pediatric Cancer patients, in the hope that the officers will teach these kids life skills that will help them through their individual cancer battles.
With Rock Climbing being the central activity, these kids learn such skills from the Navy Seals as courage, determination, resilience, and strength. These Navy Seals serve as mentors for the kids, and this mentorship can last many years, which is great news for both the Pediatric Cancer Patients, and for each Navy Seal Officer.
Jack Hoffman was diagnosed with Brain Cancer when he was 5 1/2 years old. Eventually, the Hoffman family who lives in Nebraska, came to Boston to get treatment at Boston Children's Hospital and Dana Farber. Jack is about to become 17 years old , he is a junior in high school, and is doing well enough that he is playing on his high school's football team.
Bri will also talk about the Team Jack Foundation which has focused on far reaching efforts to help in the fight against pediatric brain tumors.
Dr. Rachel Orgel was diagnosed with a Franz tumor on her pancreas when she was living in Okinawa, Japan in 8th grade. This very rare cancer is known as a Solid and Epithileal Neoplasm of the Pancreas. Rachel had a relapse when she was a high school junior and then again when she was a student at the University of Florida. She had one final surgery to remove the tail of her pancreas and this has led Rachel to being cancer free for the past 18 years.
Rachel will talk about those cancer battles, , her days as a student in which she received her Bachelor of Arts, Masters, and Doctorate from the University of Florida , her career in teaching, and her recent book entitled BUT IS IT THE BAD KIND on today's podcast.
Dr. Todd Druley will talk about a number of subjects on today's Podcast. One of his major goals is to improve molecular diagnostics for these kids who suffer from a variety of cancers, and he will also discuss the cases with children who have Down Syndrome and have Birth Defects in relation to their chances of being diagnosed with some form of Pediatric Cancer. Recently named the Chief Medical Officer at Mission Bio, Dr. Druley will also talk about some of the advances that this company is making which could lead to a much brighter future for these kids and their families.
Summer Germann has a background in Product Development. After her 10 year old brother Mac died from Leukemia in 2002, Summer thought for a long time about how she wanted to honor the memory of her brother. After seeing a friend's daughter who was being treated for cancer wearing a drab hospital gown, Summer decided to use her product development skills to design a new hospital gown, with a much more creative look and one which was more user friendly.
Summer designed her first BRAVE GOWN in 2015, and 7 years later, has distributed these gowns to 500,000 Pediatric Cancer patients, in nearly 380 hospitals , in 6 countries around the world.
In 2007, Lois Wells, the mother of Concord Carlisle High School Assistant boys soccer coach Steve Wells passed away from Ovarian Cancer. As a response, Head Coach Ray Pavlik decided to honor Steve and Lois by organizing a soccer game between Concord Carlisle and Boston Latin which raised $8000 for the fight against this disease.
That was just the beginning. This one soccer game has became an amazing 3 day fundraiser called KICKS FOR CANCER in which High School soccer teams from across the Greater Boston area come to Concord for a one day event that lasts from 9:30 am to 10:30 PM and has even more intensity then a State Championship game. In addition there is a Pink Dance on Friday evening and Sunday there is a 5 kilometer road race in which 1800 people participated in last year.
Boys Soccer Coach Ray Pavlik and KICKS FOR CANCER Chair Trish Siefer will talk about this fundraiser on today's podcast . This event is really one of a kind and is a great example of how High School students can become passionately involved in something bigger than themselves.
Dana Norrod will talk about her son Corbin, who was diagnosed with Stage 3 Neuroblastoma when he was 6 months old. After some early scares about his legs and his heart, Corbin will be 10 years old in October and is doing as well as possible health wise. Dana is the Operations Manager for the Non Profit Nellies Champions For Kids and will talk about her role there, as well as talking briefly about her then 6 month old daughter Lily, who also had a serious health scare which thankfully was taken care of.
Dr. Lisa Diller has had many titles during her great career at Dana Farber and Boston Children's Hospital. These titles include being the Chief Medical Officer at Dana Farber, the Vice Chair of Pediatric Oncology at Dana Farber, and the Director of the David Perini Quality of Life Clinic for Pediatric Cancer Survivors. On today's Podcast Dr. Diller will talk about the difficulty of Neuroblastoma, the subject of Genetic Testing for very young children, and Long Term Survivorship for pediatric cancer patients who have recovered from their cancer battles and now have to focus on how to prosper as they move on with their lives.
Jon and Jen Wall's son Zach was diagnosed with Osteosarcoma in January of 2021. Unfortunately this cancer had already spread to his lungs which cut Zach's chances of survival to no more than 30 percent. Despite an above the knee amputation of his leg and chemotherapy treatments, Zach passed away from this bone cancer on November 5th of 2021 at the age of 16 1/2.
Jon and Jenn have found the strength since Zach's passing to become involved in the cause of Pediatric Cancer as they are starting a program called Peer Coaching, which will allow them to speak with and help other parents who are going through what they went through during the latter stages of Zach's all too short life.
After being diagnosed with the pediatric brain cancer Medulloblastoma in 2004, Elizabeth Allen was able to survive her battle and move on to where she is now a graduate student at Tufts University, where she hopes to become a dietician/nutritionist. Elizabeth will discuss the fact that of the many important facets of Pediatric Cancer and how they affect these kids, the subject of Nutrition is not prioritized and is not really talked about with any regularity.
Sharon Snyder's 2 year old son Kyle passed away after an 8 month battle with High Risk T Cell Acute Lymphoblastic Leukemia in 2001. Sharon's response to the passing of her beloved son was to start the Kisses For Kyle Foundation which has helped 500 families since its inception. On today's podcast, Sharon will talk about the too short life of Kyle and her foundation which has 2 missions, one of which is financial and the other involves personal contact with families. Sharon will talk about some of the 22 programs that she has started to help families and of course their children who have gone through similar experiences to what Sharon and her family went through over 20 years ago.
Hayley and Justin Dickens 4 year old daughter Kallie passed away from Pediatric Brian Cancer on May 7th of this year, exactly 2 months before we recorded this podcast. Hayley and Justin of course are still very much in the grieving process, but still wanted to talk about their beloved daughter and what she went through before her passing.
With amazing class and dignity Hayley and Justin were able to talk in detail about Kallie's ordeal, as they try to move forward in their lives with their younger daughter Kora.
While playing soccer for her high school team as a sophomore in 2010, Hanna Jorgenson felt pain in her right hip. This hip pain turned out to be Osteosarcoma. After a grueling 8 month treatment protocol that included amputations of her right leg, hip, and half of her pelvis, Hanna was declared free of cancer. She went on to graduate from high school and while at the University of Minnesota Duluth, joined the sled hockey team. Hanna was good enough that she became a member of the Women's National Sled Hockey Team and played 4 years for them.
Now 28 years old and 12 years past her Osteosarcoma diagnosis, Hanna is happily married, working full time, and contributes to the cause of Pediatric Cancer by volunteering at the Mayo Clinic in Rochester , Minnesota.
Jim and Dori Sexton's 3 year old son passed away from Neuroblastoma in 1993 after an intense 9 month treatment protocol. Disappointed by the lack of research that became apparent to Jim during his son's pediatric cancer fight, Jim and Dori started the Neuroblastoma Children's Cancer Society Non Profit in 1994. Their non profit is now approaching 30 years of helping kids and their families deal with various aspects of Neuroblastoma.
After an incorrect diagnosis of Mild Cerebral Palsy, Jamie McElhatton's now 8 year old son Max was diagnosed with the Pediatric Brain Cancer Pilositic Astrocytoma in 2018. Jamie will talk about his son and about a 60 minutes piece that aired on May 22nd by Bill Whitaker that talked about the drugs Vincristine and Vinblastine, and the shortages of each of these drugs that are important to Pediatric Cancer patients.
When Kathleen Casey's son Barrett (Bear) was diagnosed with Wilms Tumor in the late 1980's, she was told that this kidney cancer was highly curable and the expectation at that time was that her son would recover and be able to lead a good life which many children diagnosed with this cancer are able to do. Unfortunately, things turned south rather quickly and after a 5 1/2 year battle , Bear passed away in January of 1993.
That same year, Kathleen started the Bear Necessities Pediatric Cancer Foundation in honor and memory of her son. The 2 Missions of this Foundation are 1) Research and 2) helping Children with Pediatric Cancer rediscover their childhoods. Kathleen's Foundation has persevered for almost 30 years and has become part of the fabric of the city of Chicago.
Marian Newell's son Jesse was diagnosed with Ewing's Sarcoma when he was 11 years old in 2001. This diagnosis led to a relapse which turned out to be Leukemia. Marian and her daughter Samantha will talk about their beloved son and brother who did as much living as possible until his passing in July of 2004.
With prior encouragement from Jesse, Marian started the Jesse's Wish Foundation which for over 15 years has helped many Pediatric Cancer Patients and their families. Samantha meanwhile is also heavily invested in this organization, as she is is the President of the Foundation.
After experiencing symptoms that seemed like she had a cold, Laura Rapa's daughter McCoy was diagnosed with High Grade Acute Lymphoblastic Leukemia when she was 4 years old. After a very difficult 1st year, McCoy was able to end her treatment on her 7th birthday which took place on March 19th of this year. Laura will talk about how McCoy is doing and how Laura has been able to return to her High School teaching career as her beloved daughter has been able to lead her life that has so much promised attached to it.
Anna Day will talk about her sister Isabella who was diagnosed with Stage 4 Neuroblastoma in 2012 when she was 9 months old. Anna was 9 years old at the time and 3 years later she decided to hold a bake sale to raise money and honor Isabella. Her first bake sale raised $2000 and with help from her mother, aunt, and other family members, she turned this bake sale into an annual event, which raised $34,000 in the fall of 2021. In 2018 Anna started her Anna's Bake Sale Foundation and has given the proceeds to both Neuroblastoma and DIPG research .
Now a college student, Anna is pursuing her degree which she hopes will lead to a career as a Child Life Specialist and will continue to help do what she can for the cause of Pediatric Cancer.
After experiencing blinding headaches in early August of 2021, Shawn Mahoney's 6 year old daughter Layla was diagnosed with a High Grade Anaplastic Supertentorial Ependymoma, which is a form of Pediatric Brain Cancer. After her initial surgery on August 2nd of last year Layla had to undergo another surgery just 5 weeks later, followed by 33 rounds of proton therapy, followed by another surgery on March 11th of this year, which finally completely removed her tumor. On May 18th, DNA/RNA sequencing showed that there was an 81.82 chance that her cancer would NOT come back and Layla was able to complete her academic year in school. There have been new developments in her case since this podcast was recorded and they will be talked about on my Outtro.
Jen Caruso is a young woman who is totally dedicated to the cause of Pediatric Cancer. Already having the desire to help others while she was a Girl Scout, Jen started her SWIRLS AROUND THE WORLD FOUNDATION after her cousin Matthew passed away from Ewings Sarcoma at the age of 19 in 2013.
While a student at Northeastern University, Jen began the Children's Miracle Dance Marathon Chapter and was the Regional Manager for the Love Your Melon Campus Crew.
Jen is now on the Board Of Directors for the Tommy's Place Vacation home for Pediatric Cancer patients and their families and still has time to hold a full time job as a Physician's Assistant at New York Presbyterian Hospital.
Misty Hughes was diagnosed with Acute Lymphoblastic Leukemia just before her 9th birthday. As she recovered from this form of Pediatric Cancer, she decided to establish her main goal in life which was to help and serve others. Misty has accomplished this goal in several ways, whether it was to volunteer at both the Leukemia and Lymphoma Society and the American Heart Association, being a fitness trainer , or now 40 years removed from her cancer battle, going to the University of Houston to get her degree in social work. Her goal with this degree at least to some extent is to help families that have to deal with Pediatric Cancer.
Alexandra Neenan's interest in the cause of Pediatric Cancer began while she was a college student and joined the Lemon Club, which is associated with Alex's Lemonade Stand. This interest led to her receiving her Master's Degree in Clinical Psychology from Eastern Michigan University and currently she is pursuing her doctorate there. Alexandra hopes to use the knowledge from the many aspects of Pediatric Cancer that she has researched including activism, advocacy, grief, guilt, and other psychosocial subjects, to make a career out of helping children and their families have an easier road as they try and get through this most difficult time.
Leia Hunt was diagnosed with Retinoblastoma when she was just 2 1/2 years old. This form of Pediatric Cancer cost her the use of her left eye and she went through many difficulties both physically and emotionally during her early years, adolescent years, and into her teenage years.
Knowing instinctively that she had to help other kids who were suffering with different forms of Pediatric Cancer, Leia started her LEIA'S KIDS Non-Profit when she was 18 years old.
Her mission is to directly help kids and their families who need financial support to cover expenses and Leia hosts a "Crowning" Party for those families who qualify for a $1000 check.
Her non-profit now has over 100 kids waiting to be crowned and there will be many more down the road as Leia intends to expand and help as many deserving kids as possible.
Tyler Trent was diagnosed with Osteosarcoma in 2014 after what was thought to be only a broken arm after throwing a frisbee. His parents Kelly and Tony will talk about Tyler's incredible journey which eventually became known throughout the country due to his connection to the Purdue University Football team.
Attending Purdue while a freshman , Tyler and a friend decided to camp out the night before at the football stadium before their game with Michigan. What was most unusual about this was that Tyler had just completed a chemotherapy treatment 6 hours before. When head football coach Jeff Brohm got word about what Tyler did, he visited him the next morning.
That began the amazing connection that Tyler developed with the entire Purdue team, especially with starting quarterback David Blough.
In 2018, as Tyler's condition worsened and he was unable to return to school, he still made his presence felt by predicting that his beloved Boilermakers would upset undefeated Ohio State in a Nationally Televised game. Purdue destroyed the Buckeyes 49-20 . Tyler attended the game despite being very sick the week leading up to kickoff, and he was really the star of the night.
Sadly, Tyler passed away less than 3 moths later. His legacy however, will continue for many years to come.
Mandy Spielvogle Powell is the Managing Director and Steve Passagno is the Treasurer of the non-profit the Coalition Against Childhood Cancer. Mandy and Steve will discuss the many programs that this world wide organization has implemented to make their non profit a major factor in the fight against Pediatric Cancer.
With their focus being on coming up with less toxic treatments, pediatric cancer awareness and survivorship, research and treatment, and family support, their non profit brings people in from differing backgrounds to collaborate with each other to find the best solutions for these most difficult problems that face pediatric cancer patients and their families.
One of the reasons that Lily Pevoto wanted to attend Penn State University was that she was so impressed with their Dance Marathon known as THON. This event is the largest student run philanthropy in the world. Now approaching its 50th year, this fundraiser has 700 dancers who take to the floor at the Bryce Jordan Center in State College and dance for 46 straight hours. More than 16,000 student volunteers make certain that this event runs as smoothly as possible. Lily is the Executive Director for the upcoming THON to be held in February of 2023, and will talk about this fundraiser which has raised over 200 million dollars for the cause of Pediatric Cancer.
Lorna Day's son Sam was diagnosed with Ewing's Sarcoma in 2010 and went through an arduous treatment ordeal that included losing his left leg and right foot to amputation. After Sam's very unfortunate passing in 2016, Lorna set out to help other pediatric cancer patients and their families as she set up her Sam Day Foundation in honor and memory of her beloved son. As its' core principal, this foundation focuses on trying to fund research for the most difficult pediatric cancers including many of the Sarcomas and Brain Cancer.
Nicknamed the "Hope Junkie," Lorna will talk about the many programs that she has initiated through her foundation in the Pacific Northwest, as she strives to accomplish a goal of getting as many people as possible involved in this Pediatric Cancer fight from that area of the country, and especially in her home state of Oregon.
Rich Nardiello suffered a hemorrhagic stroke at the age of 55 and fortunately was one of the 4-6 percent of people who survive that condition. After relearning how to speak, swallow, talk, and walk, he went back to work and then at age 60 decided that he wanted to focus his attention on making lives brighter for Pediatric Cancer Patients.
As a result, Rich started his own non profit called PopPops Kustom Kars. For this non-profit Rich designs and builds Custom Coupes and distributes them to pediatric cancer patients. He has now delivered close to 50 of these kustom kars to individuals and also is working on kindness kars, which he has delivered to local hospitals with global hospitals possibly on the horizon.
In 1988 iconic actor Paul Newman started the Hole in The Wall Gang Camp to help kids who were suffering from both pediatric cancer and other illnesses to be able to have fun and "Raise A Little Hell" for one week each summer.
On today's podcast Jimmy Canton, who has been with the camp since its inception and has been its CEO for the past 20 years, will talk about how this week away from treatment and hospitals is so therapeutic and what this camp has meant to so many kids and their families.
While home during college break Kylee McGrane watched the movie Frozen. As she saw the Princess Elsa, and also thought about how Taylor Swift did so much for Pediatric Cancer patients , Kylee thought it would be fun to dress up like a princess herself, and visit a pediatric cancer patient in the hospital. After she and her roommate went to a hospital on Long Island dressing up as Princesses Anna and Elsa, Kylee decided to continue what she started , which ultimately led to to her non profit A MOMENT OF MAGIC.
This non profit, which features college students from around the country dressing up as princesses and interacting with pediatric cancer patients is now in 350 hospitals, has helped 110,000 kids, and has 29 chapters in colleges and universities in the United States.
During the time period that David Hagan's son Ben was going through his battle with Leukemia, a battle that he unfortunately was not able to recover from, David joined the Worcester , Ma. based non profit WHY ME to help him cope with what Ben was going through. This non profit affected David to the point where he eventually gave up his career in banking to become the Executive Director of this non profit, trading his focus from profit and loss to helping children and their families.
Jaclyn Murphy was diagnosed with Medulloblastoma when she was 9 years old. During her treatment, the Women's Lacrosse Team from Northwestern University found out about what Jaclyn was going through, and "Adopted" her as a team member. This act of kindness proved to be a special one for both Jaclyn and Northwestern, so much so that Jaclyn's father Denis and the Murphy family started the Friends Of Jaclyn Foundation.
The central theme of this Foundation centers around its Adopt A Child Program, in which colleges and high schools around the country "Adopt" a Pediatric Cancer patient and make them a team member. This foundation was started in 2005 and is nearing 1000 patients that have been adopted with many more to join them in the future.
Jaclyn is now 27 years old and is able to live a life of good health as she and her dad give so much back to kids who need it the most.
After having trouble learning how to ride her bicycle when she was 6 years old because of accidents and balance issues, Terry Calvin's daughter Claire was diagnosed with DIPG in the spring of 2020, just as the Pandemic was raging across America and the world.
Terry will talk about what Claire has had to go through since that time, the support that has been generated for her in their community, and how Claire is doing now as she is 23 months past her original diagnosis.
Laurie Strongin's son Henry passed away at the age of 7 from the blood disorder Fanconi Anemia in 2002. During Henry's battle with this disorder and after he passed away Laurie worked very hard with the United States Congress, which included polar opposites Nancy Pelosi and Newt Gingrich to try and pass the Stem Cell Enhancement Research Act which would have helped Henry during his health crisis. Laurie appeared on Nightline, wrote an op-ed piece in the Washington Post criticizing then President Bush for vetoing the legislation, and eventually took part in a White House Ceremony with President Obama who lifted the ban on the funding of the desired bill in 2009.
Laurie also started the Hope For Henry Foundation which directly impacts Pediatric Cancer patients as it looks for ways to make their hospital stays as comfortable and pleasant as possible. This foundation has helped 74,000 kids and the Hope For Henry Program is now in 20 hospitals around the country with definite expansion plans on the horizon.
Katie Holcomb's brother Ryan was diagnosed with Osteosarcoma when she was entering her sophomore year in high school. On today's podcast Katie will talk about her brother who went through so much before passing away in 2007, 5 days before Katie turned 21.
Katie will discuss the difficulties that she had as a sibling during this time period which can be so hard for a brother or sister who have to watch and deal with something so unfortunate.
Also in 2007, Katie's parents Cindy and Gavin started the non profit Ryan's Case For Smiles. This non profit's mission is to make things as easy and comfortable as possible for Pediatric Cancer patients during their inpatient hospital treatment, and is highlighted by the 2.5 million pillowcases which have been made and donated to many thousands of kids throughout health care facilities and hospitals.
Their motto is to Feel Better To Heal Better
Katie will talk about her role in this non profit which includes her PTSD Initiative and her siblings program, both of which she modeled in certain ways based on her earlier experiences with her beloved brother Ryan.
Before her daughter Dakota was diagnosed with B Cell Acute Lymphoblastic Leukemia when she was 6 months old in April of 2019, Shari Ann Almeida had never thought about Pediatric Cancer, which is a very normal situation for mom's and dad's as they begin their parental journey's.
On today's podcast Shari Ann will talk about how Dakota fought her cancer battle for 2 years before ringing the bell at the Lehigh Valley Riley's Children's Hospital on April 27th of 2021 , which indicated that she had completed her treatment.
Now 3 years past Dakota's diagnosis, Shari Ann will talk about her life and her perspective on life that has completely changed, and how she is totally committed to not only Dakota's health, but committed to the cause of Pediatric Cancer in every way possible.
When Madison Quinn was 13 years old and saw a story on social media about a girl who was diagnosed with cancer, she knew she had to do something. That "something" was to start her own non profit STRONG LITTLE SOULS to help children who got a cancer diagnosis, starting with her putting together care packages for them . This non profit has expanded to include granting wishes when possible to help these kids and helping families, including ones in Africa and in the Philippines.
Now 20 years old, Madison is a nursing student at Elms College in Chicopee, Ma. with a goal of becoming a Pediatric Oncologist. The Pediatric Cancer community will be thankful for that. She also wants to not only continue her non profit, but to grow it as well.
In 2018 Tim O'Connell started a non profit to start the process of achieving his dream of building a Vacation Home for Pediatric Cancer Patients and their families to enjoy for one week each year. This vacation home is called Tommy's Place which was built in Falmouth Massachusetts, was named after the famous bartender and founder of the Falmouth Road Race Tommy Leonard , and opened in July of 2021.
This 7000 square foot Disney like home which has everything but rides, has 11 bedrooms, 9 bathrooms and can fit 18 people comfortably for immediate families, extended family members, and friends, to enjoy all the amenities that one can imagine.
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.
Eric Newman was diagnosed with a very rare from of Liver Cancer when he was 3 years old. His cousins Shannon and Nicole, at 3 years old and 5 years old respectively, also were diagnosed with cancer with both eventually passing away. Eric will talk about how these situations effected him and some of the difficult times he endured, especially as a long term survivor in 2008.
Always maintaining Hope however, Eric started the Roc Solid Foundation which builds play sets for Pediatric Cancer patients, and also provides Ready Bags for these kids upon entering the hospital for their individual cancer treatments.
Nick Giallourakis's brother Steven is a 4 time cancer survivor, a journey which began when he was 15 years old. As a result of that, the Giallourakis family started the Steven G Cancer Foundation.
Nick decided to add to his family's efforts by starting his own non-profit, Elephants and Tea.
This non- profit focuses on the adolescent and young adult cancer population, which is a group which can go unnoticed as it falls right between the lives of Pediatric and Adult cancer patients.
Nick will talk about his novel organization which publishes a beautiful quarterly magazine, written by patients and others who have a direct knowledge of what it is to experience a difficult disease at such a difficult time in their lives.
Dr. Michael Jensen has been working on Cart T Cell Therapy for many years, and his work is proving to be very beneficial for pediatric cancer patients who have leukemia. This type of therapy is very much in the forefront for future types of treatment, and his hope is that some day there will be a time when children can receive far less toxic medicines that lead to a far less painful cure .
Carolyn Breinich was diagnosed with Acute Lymphoblastic Leukemia just before her 14th birthday in 1994. From the beginning, Carolyn experienced many setbacks along the road to recovery including a bad experience with her resident doctor while hospitalized, a sometimes hard road after returning to school, bouts of depression, and while a Child Life Specialist, hearing that her boss thought she could not do her job properly BECAUSE she was a Pediatric Cancer survivor.
Carolyn will talk about her journey on today's podcast and the fact that she is in a good place today, a place good enough that she can honestly say that she truly loves life.
Dena Sherwood's son Billy was diagnosed with Neuroblastoma when he was 13 months old in July of 2008. Fortunately, Billy is now thriving and a soon to be 15 year old.
Dena will talk about Billy and his very difficult early days, including a diagnosis that did not come as quickly as it should have.
She will also discuss the Arms Wide Open Childhood Cancer Foundation that she and her husband started, that has proven to be such an important part of the overall fight against Pediatric Cancer.
Included within her foundation are such well known programs as the Truth 365 and Curefest, both of which she co founded.
After an early childhood which included modeling and soccer, Cole Eicher was diagnosed with the Pediatric Brain Cancer Medulloblastoma when he was a 12 year old 6th grader. As he entered the hospital , Cole noticed that there were many younger patients that were fighting their own cancer battles. He instinctively knew that this was not right and that he wanted to be a voice for these kids.
So began the amazing advocacy work for so many children that Cole started as a 12 year old while a patient himself, and that this pediatric brain cancer survivor continues today.
Cole will talk about setting up a meeting with American Cancer Society CEO Gary Reedy and asked him to support the ideas that he had to help these children, including expanding the Relay For Life program . After Cole heard the word YES to his ideas , the Gold Together Non profit that he and his mom Laura started was well on its way.
Colleen Kisel's son Martin was diagnosed with Acute Lymphoblastic Leukemia when he was 7 years old in 1993. Martin is now 36 years old and has been able to live a very productive life following his cancer battle. Colleen will talk about Martin and how she would give him a toy after each type of cancer procedure that he had to go through.
This gesture led to her deciding that other pediatric cancer patients would love to receive toys as well, which then gave Colleen the idea to start the Pediatric Oncology TREASURE CHEST FOUNDATION, which now has donated toys to children in 64 hospitals in 21 states throughout the country.
Scott and Pammy Kramer's daughter Maddie was diagnosed with an Atypical Teratoid Rhabdoid Tumor in her spinal cord just before her 3rd birthday in April of 2017. Scott will talk about their beloved daughter who was only able to live for 8 1/2 months after her diagnosis. As you will hear in this podcast, Maddie was able to continue being as normal a kid as possible, despite everything that she was forced to go through during her cancer treatment.
Scott will also talk about the 2 books that he wrote after Maddie's passing, plus the non profit DANCING WHILE CANCERING that he and Pammy started in Maddie's memory .
Juanita Prada was diagnosed with Acute Lymphoblastic Leukemia when she was 10 years old in 2003 and relapsed in 2006. She is now a long term pediatric cancer survivor who has gone through many side effects and difficulties as she tries to live her best life possible. Juanita will talk about these side and after effects which have included problems emotionally, physically, socially, and spiritually.
Juanita also will discuss her advocacy group BEHOLD BEGOLD which she describes as a voice for kids with cancer, and an " unstoppable force of positivity, ambition, and resiliency within you that arises while going through late effects."
Patrick Lacey's son Will was diagnosed with Neuroblastoma when he was 5 months old. When he turned 2, the Lacey family was told that unfortunately Will could not be cured. On today's podcast, Patrick will talk about how he then went to work to make sure that this diagnosis was going to be an incorrect one.
After meeting Dr. Giselle Sholler, who had lost a patient to Neuroblastoma previously and was trying to find a patient that she could cure, the 2 of them and others went to work with Patrick raising money, and Dr. Sholler working on a drug called DFMO which showed promise for Will and many other pediatric cancer patients involved in the Neuroblastoma fight.
After seeing great success, the company who owned the drug shut Patrick and the doctor out from further purchasing of it, preferring to set up their own clinical trial. They decided, along with a woman named Meryl Whitmer, to set up their own Pharmaceutical company and in 106 days, they were in business themselves, having given their first patient their drug in early 2015.
The success that they have had has been groundbreaking for Neuroblastoma patients and Patrick's son Will is now a senior in high school and in the process of applying to college.
After recovering from his Pediatric Cancer Hodgkins disease diagnosis while he was in high school, Jason Nickoloff went on to become a long time board member of the American Cancer Society and in 2015 co founded the C2C relay, which is a road race that takes place between Columbus and Cincinnati Ohio and has raised over $700,000 for the Road to Recovery program. Jason will talk about all of these things, plus a class he took at Ohio State University, which ultimately led him to do all that he has done to give back to the fight against Cancer.
Stan Robbins began his advocacy work for Pediatric Cancer patients and their families after he volunteered for the first time at an event while working at Bob Evans, a well known restaurant chain in the midwest. Eventually Stan took over the running of that event and became a passionate and well known advocate for these kids on Capitol Hill and in his home state of Ohio. Stan will talk about the different ways in which he helps in this Pediatric Cancer fight and when people ask him how he can spend so much time volunteering for these kids and their families, his answer always is , HOW CAN YOU NOT?
After hearing about Nathaniel, a 4 year old boy who had a traumatic brain injury, Sara-Jane Walsh decided to create a musical video for his family to honor what he had been going through. This video was just the first of many which, along with encouraging parents to tell their stories on line of their children suffering from a myriad of illnesses including many from Pediatric Cancer , eventually became Sara-Jane's HERE'S HOPE PROJECT, which has touched hundreds of families since its inception in 2016.
Joey Felder will talk about losing his brother and best friend Ben to Rhabdomayosarcoma when he was just 5 years old and when Joey was 7. Now a 1st year Medical Student at Emory University, Joey has many memories of his time with Ben and how his younger brother has always been a true role model for him as he has gone through his childhood, adolescent, and teenage years. As Joey prepares for some type of career involving Pediatrics, he thinks of Ben's all too short life often and how his brother has inspired him to not only go to Medical School, but how to give back to others and help people who need it most.
Susan Ross was an elementary school teacher beginning in the mid 1970's in Ontario, Canada. In 2008, she began a second career as a children's author, focusing on putting smiles on the faces of kids ranging in age from 3- 8 years old. One of her books, WILLOW's WONDERFUL WIGS, which of course had a happy story line and ending, focuses on the real problem for kids who lose their hair during their treatments for the many forms of Pediatric Cancer.
Professor Claire Wakefield is one of the leading , if not the leading experts concerning psychosocial issues down in Australia. Professor Wakefield will discuss a wide variety of what she has done to help make advances in this critical area for so many residents both "Down Under" and globally as well.
Professor Wakefield is considered the most accomplished author in the world when it comes to the subject of childhood cancer survivors in the last decade, as she has helped to publish 235 articles on this obviously critical part of the pediatric cancer fight.
One of the most important subjects that is often not talked about but one which Professor Wakefield will highlight, is the role that grandparents play in the family during these children's cancer battles.
Talia and Logan Tallman's son Escher was diagnosed with Spindle Cell Rhabdomayosarcoma before his 3rd birthday in 2017. Talia will talk about the book THE SECRET CLUB Inside The World Of A Pediatric Cancer Family that she wrote, which focuses on Escher's cancer battle and the trials and tribulations that Talia and Logan went through as they tried to deal with doctors and oncologists in Florida, Boston, and California during their ordeal.
Talia will talk in depth about what she and Logan were focused on during this period, beginning with their initial opposition to both chemotherapy and radiation during the early stages of Escher's treatment, and how she eventually was able to change her thought process on the overall protocol that Escher successfully completed in October of 2018.
Scott Kirian, a cancer survivor himself, will discuss his passion for pediatric cancer patients and their families that he has met over the past several years and the emotional support that he has provided to them. He will also give his thoughts as to what this cause means to him and how he has been welcomed by the families that he has supported.
Cindi Bonner will talk about the Rally Foundation in Pensacola Florida which was added to the already established Rally Foundations in Atlanta and Nashville, to give another location for pediatric cancer patients and their families to take advantage of the programs and advances that this Foundation has been providing for many years.
Cindi will be joined by Anamarie Mixson, who lost her son Wyatt to a seven month sarcoma battle in February of 2021. Anamarie will talk about how much Rally has meant to her even after Wyatt's passing, and will also talk about Wyatt's experience of being a Rally Kid.
Shortly after Sophie Ryan was diagnosed with an Optic Pathway Glioma in 2013 when she was 8 1/2 months old, her mother Tracy decided to treat Sophie with cannabis in combination with the traditional treatments such as chemotherapy, as she and her husband Josh searched for ways to help their daughter recover from this form of Pediatric Brain cancer.
Contacted by Talk Show host Ricki Lake, they decided to participate in the movie Weed The People over a 6 year span and this film is still available on Netflix. As the Ryan family found that cannabis had an ingredient that helped to produce natural killer cells to help ward off cancer cells, they and Sophie's doctors saw a rapid improvement in her condition.
As Sophie approaches her 9th birthday, her killer cells are continuing to produce good results as her cancer cells continue to diminish .
Both Brian Gourley and Dwight Witherspoon had difficulty finding the proper doctors and hospitals for their children, each of whom had been diagnosed with different forms of Leukemia. They will discuss their frustrations during this period and will talk about the solution that Brian and his wife Erin came up with when they started their data based business CUREWHEEL.
This business focuses on organization, simplicity, and structure to help parents who are in a similar position as they were, to have a much easier path in choosing the right situation for their children who have been diagnosed with any form of pediatric cancer.
Jessica Pajak will discuss her daughter Emma who was diagnosed with Ewings Sarcoma when she was just 6 weeks old. After her first year of life was filled with chemotherapy treatments, biopsies, blood transfusions and MRI's, Emma is now 4 years old and has shown No Evidence of Disease for the past 3 years.
Jessica will also talk about the Wine Company ONE HOPE and how its mission of giving a percentage of all its sales to charitable causes gave her the opportunity to give back to children suffering from Pediatric Cancer.
Gabriella Miller lived less than one year after her diagnosis of DIPG in 2012. During that time, she was able to become a passionate advocate for the cause of Pediatric Cancer, including a memorable statement just 2 weeks before she passed away as she implored Congress to "STOP TALKING AND START DOING" Shortly after that House Majority Leader Eric Cantor, helped to push through legislation that he named the Gabriella Miller Kids First Research Act that was signed into law by President Obama in 2014.
Her mother Ellyn will talk about Gabriella , and will also discuss her own advocacy work which started with the Gabriella Kids First Research Act and has continued through her recent testimony given on Capital Hill, about the Gabriella Miller First Research Act 2.0. As a major voice on Capitol Hill for this Pediatric Cancer cause , Ellyn's work has produced and is producing major legislation that is making a very positive difference in the lives of kids who need it the most.
After a 31 year career as an executive at IBM , Mark Weiss decided to start a non profit that would bring passion and help others. This non profit, COMIC BOOKS FOR KIDS is now the largest charity for Comic Books in the country. Mark will talk about how he started this non profit in 2017, and the steps that he took to get his organization to where it is today. The bottom line is that it has helped brighten the days of Pediatric Cancer patients in 180 hospitals across the country as they endure their individual cancer treatments.
Courtney Durante's daughter Lilli was diagnosed with an Optic Pathway Glioma Brain Tumor when she was 4 years old. Lilly decided to wear a different costume to each of her year long chemotherapy sessions . Now 7 years old, Lilly is doing very well health wise. In honor of Lilly, Courtney started the Non Profit COSTUMES FOR COURAGE which provides costumes to pediatric cancer patients in hospitals in the United States and other countries. Because of Covid this non profit did not truly get its start until October of 2020, but has already provided 250 patients in 41 states and 6 countries with costumes that help to make their cancer treatments easier to endure.
Melissa Scott is the Managing Director of the Charlotte North Carolina branch of the Pediatric Cancer non profit COOL KIDS CAMPAIGN. Melissa will talk about the many different programs it offers to these kids and their families, and will also discuss the contributions from former great athletes and current Board Members Ken Singleton and Dan Jansen, as well as the contribution from all time Olympic star Mike Eruzione.
Just 1 day after her son Jacob passed away from Medulloblastoma in 2009, Nancy Goodman started the Non Profit KIDS V CANCER. Nancy will discuss this non profit, whose objective it is to find new methods and medicines to help in the fight against Pediatric Cancer. Nancy is one of the leading advocates on Capitol Hill for these kids, and her advocacy has produced a number of initiatives along with legislation that has produced successful results and promises to produce even more successful results as time goes on.
After hearing that a fellow high school classmate was diagnosed with Non Hodgkins Lymphoma, High School seniors Cole Stabnick, Luke Reynolds and five others created an event to honor his cancer fight. This event became a non profit called BALL 4 A CURE. This non profit is anchored by a 3 on 3 basketball tournament along with a recently added golf tournament and has raised over $100,000, which has been donated to the Connecticut Children's Medical Center to help in the fight against Pediatric Cancer.
This non profit is only in its infancy as there are plans to expand both the number of events as well as hopefully working directly with pediatric cancer patients to help make their difficult lives easier and happier.
Both Cole and Luke are vey passionate about giving back which is always a great thing to see, especially from two young men that are simultaneously trying to advance their own blossoming career paths.
Emily Hein is a Registered Nurse, and a mother of two children who fortunately have never been diagnosed with Pediatric Cancer. After her friend's 5 year old daughter passed away from Neuroblastoma, Emily, who was a long time volunteer for different causes, decided to concentrate solely on helping kids and their families navigate their way through the most difficult path imaginable as they fight their individual cancer battles.
Emily will talk about her advocacy work and her relationships that she has developed with many children and their families who are going through this process.
Jayne Vinson's grandson Jayden was diagnosed with colon cancer when he was 11 years old, a from of cancer that normally strikes adults in their middle age years or even later. Jayden went through an excruciating 17 hour surgical procedure which cost him his colon, spleen, gallbladder, and part of his liver and pancreas in the process. Jayden passed away of July 17th of this year. As rare as this cancer is when it comes to children, it unfortunately may not be as rare in the years to come.
Dr. Tabitha Cooney joined the Dana Farber Cancer Institute in 2019 as a Pediatric Neurooncologist as well as the Director of the Pediatric Neuro Oncology Survivorship Program. Dr. Cooney will talk about those roles as well as discussing the clinical trials that she has been working on and the difficulties that Pediatric Brain Cancer survivors face as they move through their lives into adulthood.
After her daughter Sydney was diagnosed with Neuroblastoma in the spring of 2020, Jenna Brown decided to start a Non Profit called LOVE SMILES. This non profit invites Children's Authors, Illustrators, and Publishers to share their works with Pediatric Cancer patients through an app, and also allows parents to share stories of their children's individual cancer battles on the Love Smile website.
Fortunately Sydney has been in remission since June of this year and this non profit, started in November of 2020, is making great headway with authors who know how to put a smile on the faces of children.
Regina Karchner was finally diagnosed with a Pediatric Brain Tumor when she was 16 years old, 2 years after her symptoms were dismissed by her pediatrician, who suggested that Regina's mother , who was insisting on a more thorough examination, go for psychological help.
As is always the case, her mother proved to be correct and Regina has since dedicated her life to helping other Pediatric Brain Cancer survivors through her position as the West Region Social Work Coordinator for the Children's Brain Tumor Foundation.
When Derek Zinser's father passed away on January 1st of 2009, Derek decided he needed to become involved in the fight against cancer, and chose Pediatric Cancer as his outlet. Five years after his father's passing in 2014 Derek started Mascots For a Cure, a non profit to help cheer pediatric cancer patients up during their treatments in hospitals around the country. This non profit featured the Chubby Checker Twist Challenge, which became a signature part of helping these kids.
Not to be content , Derek has recently completed a book entitled Sir Roland's Big Adventure which he hopes will be a New York Times Bestseller, and will be released to the Public on January 1st of 2022, exactly 13 years to the day his beloved father passed away.
Derek is also planning on becoming a Pediatric Oncology Nurse, as he continues his limitless passion to do what he can to make the lives of pediatric cancer easier and as meaningful as possible.
Lauren Bendesky was diagnosed with Stage 4 Neuroblastoma when she was 14 years old in 2012. This diagnosis is rare for a teenager as this form of Pediatric Brain Cancer is usually found in children much younger.
Lauren will talk about her successful battle against Neuroblastoma and becoming an Honor Child for the St. Baldrick's Foundation when she was 16, followed by her becoming an Ambassador for St. Baldrick's.
Lauren is now a medical student at the Lewis Katz School of Medicine at Temple University and is focusing on a career in Oncology .
Maya Collins was diagnosed with Acute Myleoid Leukemia in 2011 and passed away in October of 2017 at the age of 14. Her mother Bonnie will talk about the life of giving that her beloved daughter chose during the 6 year period that she was battling this difficult form of Leukemia. Bonnie will also discuss the Live Like Maya Foundation and the Third Eye Brewing Company that were started after Maya's passing, and how both organizations have Maya's influence embedded in everything that each are trying to accomplish.
Elaine Kay 's son James was diagnosed with Peripheral Neuroectodermal Tumor Ewing's Sarcoma in February 2005. This cancer is so rare that only 26 people before James had ever had a diagnosis of this form of cancer.
Elaine will talk about her son's recovery and will also discuss her role as the Director of the non profit Rally Nashville Foundation and the success that it has had in funding research for new medicines, and in creating an environment that has established it as an important part of the Nashville community.
Joe Bullock was diagnosed with stage 3 Colon Cancer at the age of 50 in 2018. Joe is now fully healthy and has dedicated his life to helping children, adolescents, teenagers, and their families deal with a cancer that is normally found in much older people. Joe will discuss his non profit Colontown Jr. which is set up to help those who are suffering from the crushing reality of Pediatric Colon Cancer, and he is currently working with 13 families who are trying to understand and cope with a diagnosis given to their children which is so rare.
Meredith Gaffney's younger sister Madeline was diagnosed with Chronic Myelogenous Leukemia in 2009. Meredith will talk about her role as an older sister and sibling during Madeline's illness, including how she herself had to fight off some very normal and real emotions including some resentment at times, and being on the "backburner" of the family dynamic on occasion.
What has resulted is a much more independent and self confident woman who has always been the best possible sibling, and has taken her love for helping others to her current profession of teaching.
The role of a sibling can be a very difficult one during their brother or sister's pediatric cancer battles. Olivia Tomoff, whose brother Ryan had been diagnosed with cancer 5 times beginning in 1996 when he was 2 years old, will talk about her very important position as Ryan's sister and sibling, as she was involved in a most positive way in many aspects of Ryan's recovery.
Olivia considers Ryan to be her hero and they both fill the role of being each others biggest cheerleader.
Mary Ann Massolio saw her son pass away at the age of 9 from Non Hodgkins Lymphoma, only 6 months after being diagnosed with a cancer that normally has a very high cure rate.
As a Pediatric Oncology Social Worker in Tampa Florida, Mary Ann had been involved in non profits for many years and then became the Director of the 1 Voice Foundation. After thinking about an idea that she had, in 2011 Mary Ann began the lengthy work of planning and putting together the 1 Voice Academy, which is the first school in the nation to be designed solely for Pediatric Cancer Patients. This school officially opened earlier this September, after a more than 10 year process.
Mary Ann will talk about both her son Jay and the 1 Voice Academy, which hopefully will be just the first of many schools to offer parents an opportunity to enroll their normally stay at home children into a place with the proper type of environment for both health and learning.
Dr. Shani Fox had a well established business career before she decided to leave the corporate world and go to medical school. Eventually she became a Cancer Survivorship Expert and a Life Mastery Coach. Dr. Shani ( as she likes to be called) will discuss issues such as overcoming the number one problem for cancer survivors which is FEAR. She will also talk about relationships, guilt, siblings and the WHY ME question.
Although Dr. Shani works with adult cancer survivors, there are many similarities with the concept of survivorship with both adult cancer and pediatric cancer survivors.
Kelly Goddard's 10 month old daughter Riley was diagnosed with Glioblastoma a brain cancer that is so rare for infants , that only 10 to 20 cases are found each year in people so young. After hearing that Riley's prognosis was for a 1-2 year lifespan, Kelly did as much research as possible and found a neurooncologist from St. Jude Children's Research Hospital who thought that Riley could be cured. Kelly and Riley spent seven months in Memphis for Riley's treatment, and now 9 months after her treatment has been completed, Kelly was told that Riley had No Evidence Of Disease and she hit all her physical marks at her 2 year old checkup.
Kelly will also talk about her critical role as the Health Navigator for the National Pediatric Foundation.
Beginning when she was 12 years old, Ali Hornung has taken the role of being an advocate for Pediatric Cancer patients to a new level. She has raised over $200,000 for these kids , started a small business called Miracle Masks in which she created 2500 facemasks with the proceeds going to different pediatric cancer organizations, and started and is the CEO of the Glimmer Of Hope Foundation , in honor and memory of a young woman named Ella Enteglia, who passed away 2 years ago from Leukemia at the age of 14.
There are a number of other accomplishments that you will hear about in this podcast.
This totally remarkable young woman is really just getting started, as Ali just entered her senior year at the University of Rhode Island. It should not surprise you to know that she is a triple major.
Within the last 4 years Sarah Milberg has taken on the roles of being a Co Chair for the Alliance for Childhood Cancer and as the Director of Government Relations for the St. Baldrick's Foundation. Sarah will discuss these roles and will also talk about her former position as an aide to Missouri Congressman Russ Carnahan, who served in Washington from 2005-2012. Sarah also gives us great information of some of the innerworkings of trying to deal with Congress, and some of the obstacles that exist while trying to being an advocate for Pediatric Cancer.
Liam Witt lost his battle against Neuroblastoma in 2011 after a 4 year fight against this form of Pediatric Cancer. His mother Gretchen will talk about Liam's life and the non profit Cookies For Kids Cancer which she and her husband Larry started in 2008 in response to the medicine protocols that Liam and other children had to endure during their cancer treatments.
This non profit has had over 13,000 grassroots fundraisers in all 50 states and in 20 countries, has raised $17 million dollars, and has been able to award 110 research grants which have helped to create newer treatments, helping these kids look towards a brighter and healthier future.
At the age of 2 in 1996, Ryan Tomoff was diagnosed with the first of his 3 battles with Leukemia. Ryan relapsed in 2000 and in 2004, before a bone marrow transplant finally set him on his way to beating this form of Pediatric Cancer. 12 years later in 2016 this time at the age of 22, Ryan had 2 bouts with tongue cancer. Since his last diagnosis Ryan has thankfully been free of any form of cancer.
Ryan's mother Terri will talk about her son's journey of 5 cancer battles and how a community village of people, honesty, and spirituality contributed to how Ryan is doing today, and how the Tomoff family was able to both survive and thrive during such a difficult time which has gone on for almost 25 years.
Terri will also talk about her book FOCUSED FIGHT which details Ryan's life. This book was published in March of 2021 and has drawn rave reviews on Amazon.
Rachel McCallum was diagnosed with the brain cancer Anaplastic Astrocytoma when she was 5 years old in 1993. Now, 28 years later, Rachel will talk about the many difficulties that she has had in trying to lead the best life possible as a long term pediatric cancer survivor. She will discuss both her physical and emotional journey which has taken a big toll on her including physical ailments such as hearing loss , dry eye, and emotional issues that she has had with anxiety, depression, and different forms of grief.
Tamara Miles lives in Sydney Australia with her husband and 4 sons. Her son Bryson is now 8 years old and 5 years past his diagnosis of Medulloblastoma, and her son Ryder who is 3 1/2 has endured 18 brain surgeries, none of which had anything to do with Pediatric Cancer. Tamara will talk about what has been a very difficult journey for Bryson and Ryder, plus the emotional strain that has affected both her and her husband Grant.
Tamara will also talk about the problems that the hospitals in Sydney and other places in Australia face , as the government cannot afford to give these hospitals the money that they need to do as much as they can for the cause of Pediatric Cancer.
Sadie Keller was diagnosed with Leukemia when she was 7 years old in February of 2015. Two month later she produced her first video while she was undergoing treatment, because she wanted to make sure that others would not be afraid of this disease.
Her videos gained national prominence as they were shown by ESPN during their annual tribute to former North Carolina State coach and cancer victim Jim Valvano, whose V Foundation has raised many millions of dollars to fight cancer.
Sadie is now 13 years old, has been to the White House on two occasions on pediatric cancer related matters including a visit to the oval office, has been a guest on several Fox News broadcasts, a guest on the CNN Situation Room with Wolf Blitzer, and a guest on the NBC Nightly News with Lester Holt.
She has also co-written a book with Texas Congressman Mike McCaul entitled Better Angels, and was his guest as a Pediatric Cancer International Ambassador in Botswana Africa just before the Pandemic in February of 2020.
Sadie also is heavily involved in the Sadie Keller Foundation, for which she has created a number of novel programs as she continues to do what she can to help these kids who are going through their own cancer battles, as she did 6 years ago.
Ricardo Garcia's son Richi was diagnosed with high risk Medulloblastoma when he was 6 years old in 2011 and living in Spain. The Garcia family moved to Brookline, Ma. after the diagnosis and now 10 years later, after going through treatment at Boston Children's Hospital and Dana Farber, Richi is doing well and leading a good life.
Ricardo will talk about Richi's cancer battle, the Richi Childhood Cancer Foundation that he started in 2013, and the Biotech company Onceoheroes Biosciences that he cofounded a few years ago, which is is 100 percent focused on developing new drugs that will help pediatric cancer patients in future years.
Tatum Fettig will talk about her daughter Teagan and her battle with Medulloblastoma, which she was diagnosed with just after her 2nd birthday in December of 2016. Now 4 1/2 years later Teagen is doing well and is about to enter 1st grade .
Tatum will also discuss the first non profit nationwide APP that she designed, which allows parents of pediatric cancer patients to communicate with one another. This APP has only been available since September of 2020 and promises to allow parents to take advantage of a whole new level of communication, as they meet their fellow peers who are going through the same or similar issues that they are experiencing themselves.
Heather Serafin was diagnosed with the deadly Pediatric Brain Cancer DIPG when she was 15 years old in October of 2013. Her mother Beth will talk about her daughter who was able to live as full of a life as possible for the next 2 years, before her passing in October of 2015. She left a legacy of inspiration for others that will continue on for many years to come.
Heather was the "Head Cheerleader" for the non profit The H Life that was started with the dual mission of raising funds for pediatric cancer research and helping families who were similarly struggling with a pediatric cancer diagnosis. Although Heather passed away not too long after this non profit was started, she would be very proud to see an expanding non profit, with many different types of COFFEE being the signature product that is sold, along with almost 100 products that you can purchase on line, in honor and memory of Heather.
Debbie Wagers has spent 28 of the last 30 years as a Child Life Specialist in Nebraska but her impact has been made across the United States and in other parts of the world. Her ONE VOICE program which she started in 1996 , is now being used in 150 hospitals across the United States and is in 4 hospitals around the globe. Debbie also collaborated with Roger Holzberg who was on my podcast a few weeks ago, on his Reimagine Well and Immersive Therapy programs which are also in hospitals across the country.
As if Debbie did not have enough on her plate, she is the Program Director for a summer camp for children with cancer and blood disorders, and is also the Local Program Manager for the Child Life Disaster Relief Program.
Debbie also was a leader in helping to reduce the median age of sedation for pediatric cancer patients from 5 years to 2.9 years at Nebraska Medicine.
Arianna Raso was entering her senior year in high school in 2019 when she was diagnosed with Non Hodgkins Lymphoma. Nicole Raso was just 3 years old when she was diagnosed with Leukemia in 2000. These first cousins will discuss their individual battles with Pediatric Cancer and what it has meant to them to be able to communicate with each other about what they have been through.
They both are involved in events which raise money for other cancer victims. Arianna has her Arianna's Army Jimmy Fund Walk team which was able to raise over $17,000 during the pandemic in 2020. Because of that, Arianna was named the First Time Walker Of The Year. Nicole has just completed her second ride in the Pan Mass Challenge.
Both of these wonderful young women are great examples of how to face adversity and to make a positive difference in the lives of others.
Kayla Funk was in Nairobi Kenya on a 3 month trip when she became ill and eventually had to return to her home in Birmingham, Alabama. Kayla was then diagnosed with Neuroblastoma which is a very rare Pediatric Cancer diagnosis for someone who was 18 years old at the time.
Kayla went through the standard treatment protocol which included chemotherapy and radiation. This treatment lasted 15 months and after her treatment was completed, her family was told that she only had 6 to 8 weeks to live. Upon the insistence of a family friend, Kayla went to see a Naturopathic doctor who put her on a regiment that included juices , smoothies, and different meals, which was a complete reversal of the treatment she had been on.
100 days after the 6-8 week period that she was told she had left, Kayla married her now husband Austin in Turks and Caicos. Five years removed from that experience, Kayla is now fully healthy and runs a non profit called Open Hands- Overflowing Hearts to help other pediatric cancer patients and their families.
In her role as the Director of the Supportive Care Clinic at the Aflac Cancer and Blood Disorder Center in Atlanta, Dr. Katharine Brock wears many hats. Dr. Brock will talk about this critical role for pediatric cancer patients and their families that she serves in trying to make certain that each day for these children and adolescents is better than the day before.
Dr. Brock will also talk about the difference between Palliative Care (Which is a synonym for Supportive in this case) and Hospice Care, as well as being chosen as the winner of the very prestigious Hastings Center Cuniff-Dixon Physician award . This award was given to her for technical competence, personal Integrity, and the ability to function well as part of a care team.
This clinic was started just a few years ago, and will be making a positive impact for these children and families for many years to come.
Carson Leslie was diagnosed with Medulloblastoma at the age of 14 in 2006 and passed away from this Pediatric Brain Cancer in January of 2010. Carson wrote a book entitled CARRY ME which was published just 6 days before his passing, in the hope that his words would comfort other Pediatric Cancer patients who would inevitably suffer from some form of cancer.
His mother Annette will talk about Carson's life, and the Carson Leslie Foundation which is helping to make great strides in many aspects of Medulloblastoma. Having the support of Texas Congressman Mike McCaul, the Cancer Prevention and Research Institute of Texas (CPRIT) which spends 12 percent of it's money on Pediatric Cancer while the average public money spent on this is only 4 percent, and the Jordan Spieth Foundation, Annette is the engine that is making certain that there will be easier treatments, and easier paths towards a cure for these children and adolescents who have to endure such a difficult disease.
Roger Holzberg has spent his entire working life introducing creative ideas and projects. He was nominated for an Academy Award in the Documentary film category in research/writing for a film called The Living Sea which was narrated by Meryl Streep.
He then spent many years as the Creative Director for Walt Disney Imagineering before his own cancer diagnosis at age 50.
Roger then decided to take his many creative talents and move them from entertainment to the fight against Pediatric Cancer. Since that time, Roger co founded "Reimagine Well" which has brought a number of important cutting edge ideas and systems to help children, adolescents, and young adults find more comforting ways to deal with their individual treatments. These systems and platforms are now in hospitals around the United States and the hope is that they will be introduced in many more hospitals here and around the globe as time goes on.
When Cole Eicher was 12 years old he was diagnosed with Medulloblastoma, which is the most common form of Pediatric Brain Cancer. After an intense 9 month treatment, Cole recovered from this disease. He has spent the past 7 years advocating for children who have experienced all forms of Pediatric Cancer.
At the age of 12 Cole decided that he wanted to be a voice for children and families facing childhood cancer. As a volunteer for the American Cancer Society he wanted to see a childhood cancer team at Relay For Life events nationwide. Cole knew that it would provide a way for children to be empowered and supported in their community. After a few years of testing, Gold Together became a national program with the American Cancer Society in November of 2018.
His mother Laura will talk about Cole's mission to create more ways for people to volunteer and support courageous kids in their community.
Amy Sapien's son Landen was diagnosed with Acute Lymphoblastic T Cell Leukemia and is currently about halfway through his 3 1/2 year treatment. Nine months into this treatment, Amy was diagnosed with Breast Cancer. Amy will talk about both of their battles, plus her involvement in CAC 2 and Prep For Gold, which are two leading Pediatric Non Profit organizations.
When Julie Guillot's son Zach passed away from Acute Myeloid Leukemia after a more than 4 year battle with this disease, Julie said upon leaving his hospital room for the last time "This Is Not Over, This Is Not Over". Julie has since kept her promise and then some, as since 2014 she has become one of the leading and most well known advocates for this more than difficult form of Childhood Leukemia.
Julie Co Founded the Target Pediatric AML Project in 2016 which the Children's Oncology Group called the highest "Highest Potential Greatest Need Project For AML And Young People" She then went to the Leukemia and Lymphoma Society where she became the National Chair for the BEAT AML inititiative which became a one hundred million dollar project.
This September in New Orleans, Julie is organizing the first Grass Roots AML Impact Conference, which will bring together people from all aspects of this disease to continue the fight to improve the lives of these kids who have had to battle Acute Myeloid Leukemia each day.
Kezia Fitzgerald has twice been diagnosed with Hodgkins Lymphoma in the past 10 years and during the early part of her own cancer battle, she gave birth to her daughter Saoirse who was diagnosed with Neuroblastoma in the first year of her life, and passed away when she was 18 months old.
During Saoirse's treatment, Kezia created a sleeve which helped Saoirse with her picc line, that she was having so much trouble with. After Saoirse's passing, Kezia and her husband Mike created the Carealine company, which manufactured this same sleeve which is now used in many hospitals to protect pediatric cancer patients and their own pick lines.
During Covid, Kezia heard about a need for isolation gowns for caregivers and created a gown that was permanent, only having to be washed every 100 times that it was used. This gown has proven to be an invaluable tool as it can replace gowns which could only be used once before they had to be disposed.
Kezia will talk about her journey with Saoirse, her own cancer battles, and her work which has helped so many children and caregivers.
Ally Tamayose and Delaney Sweet are two of the thirteen Jr. Board Members of MIB Agents, a non profit started by Ann Graham that focuses entirely on the very difficult bone cancer of Osteosarcoma. Ally and Delaney will discuss their Pediatric Cancer journeys, their plans for the future, and their thoughts on MIB Agents, which has meant so much to both of them as they are giving back to others who have been diagnosed with this same disease.
Kara Skrubis, Maeve Smart, and Mia Sandino all were diagnosed with Osteosarcoma as adolescents or teenagers. They will discuss their individual journeys with this form of Pediatric Bone Cancer , in which they all have endured very difficult treatment. They will also talk about their roles and their thoughts on MIB Agents, which is a non profit dedicated exclusively to the fight against Osteosarcoma. These wonderful young women are all Jr. Board Members of this organization, and all want to help other patients who have had to also struggle with this most difficult form of pediatric cancer.
Grace Bunke was diagnosed with Osteosarcoma in August of 2014, and fought this disease as bravely as possible until her passing in March of 2018. On today's Podcast, her mother Vicki will talk about Grace's Rotation Plasty surgery which allowed her to be fitted for a a prosthetic leg, which led to her becoming a good enough swimmer that she qualified for the Georgia Para State Swimming Championships. Although Grace was too sick to participate in those championships, Grace was able to participate in Swim Across America in Lake Lanier Georgia, just 5 months before she passed away. Vicki will also detail the treatment that Grace had to endure because of the 20 tumors that she had in her lungs, as a result of her Osteosarcoma. Finally, Vicki will talk about her own participation in Swim Across America, in which she will be participating in 14 events this year to honor the memory of her beloved daughter.
Jonathan Agin's hero, his daughter Alexis, passed away from DIPG after a 33 month battle with this most deadly form of Pediatric Brain Cancer. Since that day in January of 2011, Jonathan has become one of the foremost and best known advocates for kids who are diagnosed with this almost always terminal disease.
Jonathan will talk about the many aspects of advocacy work that he is doing in the hope that some day there will be real progress and real hope for this type of brain cancer, which has seen few real advances in treatment over the past too many years.
Jonathan is now the Director of the PREP for Gold Childhood Cancer Organization which stands for Preparation , Research, Education, and Programs and this organization will make a real impact for these kids and their families in the coming years.
Olivia LoRusso was diagnosed with Acute Myeloid Leukemia when she was 11 years old. Her mother Shelley will talk about her very difficult battle with this disease which led to her passing in April of 2017. Since that time Shelley started the Olivia Hope Foundation which is focused on both research and in helping families that are going through the very unfortunate experience that Shelley, her husband Rob, and her daughters Gia and Sabrina, (Olivia's twin) had to endure while watching this disease take hold of their beloved Olivia.
Anna Thompson's son Lake passed away from Acute Myeloid Leukemia on May 1st of 2015 when he was nine years old. Anna will talk about Lake's battle with this disease, plus the non profit that she and two other families started after they lost their daughters to the same disease a few months later . This non profit has raised almost a million dollars in research for AML. Anna will also talk about her decision 2 years ago, to donate her liver to a 22 year old engineering student who was in dire need of a liver transplant.
Bryanna Kitchen had to deal with High Functioning Autism, ADD, and learning disabililites, even before her leukemia diagnosis in early August of 2016. Her mother Kristena will talk about Bryanna's life and her 85 day hospitalization which sadly ended as she passed away on October 24th , having never left the hospital. Bryanna was nine years old.
Kristena will also discuss her Bryanna's Love Non Profit, in which Kristena is trying to help other pediatric cancer patients and their families have an easier path then did Bryanna.
When Ann Graham was training for a marathon at the age of 43, she developed pain in her leg which eventually was diagnosed as Osteosarcoma, a bone cancer which is normally found in adolescents and teenagers.
Ann will tell the story of her recovery at Memorial Sloan Kettering in New York City, where she met the mother of Alyssa Divers, a young Osteosarcoma patient who was nearing the end of her life. Ann arranged to have Alyssa spend 3 days in NYC where she went to see a performance of the Rockettes, a performance of the Nutcracker, and spent time visiting the American Girl store.
Alyssa passed away just two weeks later and Ann has dedicated her life to helping as many Osteosarcoma patients as she can with her MIB Agents Non Profit which was officially started in 2016.
Dr. Lori Wiener is the head of the Psychosocial Support and Research program at the Pediatric Oncology branch of the National Cancer Institute which is associated with the National Institutes of Health.
Dr. Wiener helped to develop the first evidence based psychosocial standards of care for children with cancer and their families. She also has introduced innovations such as Shop Talk and My Voices, plus has authored a book entitled The Gift of Gerbert's Feathers, as she has taken on the role of helping these kids understand their own cancer battles.
Dr. Wiener was also the co- founder of the Children's Inn, which is located near the National Institutes of Health, and has proven to be a go to place for these kids and families to go for care, comfort, and support.
During the 33rd week of her pregnancy, Kristin Connor was told that her soon to be newborn had a tumor that was diagnosed as Neuroblastoma 30 days after he was born. Her son Brandon is now a fully healthy soon to be 20 year old, who despite many obstacles, never had to actually undergo treatment for his disease and was declared cancer free when he was 2 years old.
During this period and afterwards, Kristin saw too many children of friends pass away from Pediatric Cancer and decided to get involved full time in trying to find a cure for these kids who needed so much help. This resulted in her being named the Director of the CURE Childhood Cancer Foundation which has a mission of trying to find the best ways of less toxic treatments, which will help these patients both now and in the future.
On today's Help and Hope Happen Here Podcast, Suzanne Gwynn will talk about both her hopes and her frustrations in trying to complete her vision of building a home which would welcome Pediatric Cancer patients and their families who are dealing with the last days of their child's lives. This home, named the Ladybug House, will be free of charge, will have medical support available 24 hours each day, and will have all of the amenities that are needed to make sure that each resident is as comfortable as possible during this most difficult period that they have to go through.
Jordan Herrle was diagnosed with Acinic Cell Carcinoma when she was 9 years old and relapsed when she was 11 years old. Now at 28 years old, Jordan is a full time medical assistant at Doernbecher Children's Hospital in Portland Oregon, which was the same hospital that she had her cancer treatment at.
Since Jordan was 14, she has spent a week each summer at Camp Ukandu, a camp which welcomes Pediatric Cancer survivors from ages 8-18, is free of charge, and has 130 kids in attendance. Jordan will talk about how that camp both restored her childhood, and has made a lasting impact on her, as she now spends much of her free time volunteering to help these kids who have gone through similar situations to what she experienced as a Pediatric Cancer survivor.
Dr. Jessika Boles is a Child Life Specialist, Team Leader, and Adjunct Professor at Vanderbilt University and will talk about her wide range of research and knowledge which has disproven long standing theories of the involvement that Pediatric Cancer patients should have in their own cancer battles.
Her research and knowledge has proven that these kids should be involved and should not be shielded from information regarding their individual situation and treatment.
Dr. Boles will also talk about some of her writings which focus on Legacy Living and Group Medical Play, and some of her innovations that she has put in at her hospital which include a Sensory- Soothing program for children with agitation or delirium and her hospital wide Bereavement Committee.
Zach Sobiech was diagnosed with Osteosarcoma in the fall of 2009 and passed away in May of 2013, just after his 18th birthday. In today's Pediatric Cancer Podcast, Zach's mother Laura will detail his amazing battle with this disease and his legacy which will live on forever. In the last year of his life, Zach produced and recorded a song called "Clouds" which rose to number 1 on I Tunes and has been viewed 12 million times on You Tube. Laura wrote a book detailing the last years of Zach's life called Fly a Little Higher, (renamed Clouds) which was the basis of a movie which came out in October of 2020 also named "Clouds" and is available on Disney Plus.
As the Psychosocial part of Pediatric Cancer becomes more and more relevant , Dr. Anne Kazak will talk about many aspects of this subject which have become standards which need to be met ,as Pediatric patients survivors and their families try to move past their recoveries and lead lives as free from anxiety driven side effects as possible.
Dr. Kazak will address the topics of Post Traumatic Stress Symptoms in patients and their families, Evidence Based Interventions for survivors of pediatric cancer, and the fact that some reports have the percentage of side effects after treatment and after the 5 year so called "cure rate" being as high as 90 percent.
Dr. Gilles Vassal is involved in many facets of pediatric oncology in Europe and around the world. He is the the Chairman of an internationally based initiative called Accelerate which he started in 2015. Dr. Vassal is also the President of Innovative Therapies for Children with Cancer which is an academic consortium , and is a professor at Gustave Rossy, which is considered to be the leading cancer hospital outside of the United States. and one of the 5 leading cancer hospitals in the world.
Dr. Vassal will share many thoughts about the past and future of Pediatric Cancer in today's Podcast.
Born and raised in Costa Rica, Gaby Miller saw her younger sister Erica pass away from Ewing's Sarcoma during her time there. Eventually, she moved to the United States, became a Physiotherapist, and has partnered with a cancer based foundation started by Pediatric Cancer patient Alexander Goodwin, to open her own Physical Therapy clinic to work exclusively with patients who are suffering from cancer.
When Fernando Morales was 15 years old, he was diagnosed with Ewing's Sarcoma. His mother Esther will talk about Fernando's 3 1/2 year journey in which he fought every way possible to to make the most out of the time he had left, even though he was in pain during a majority of his battle. His last years included traveling, making sure that he got the most out of his education including a brief 2 month stay at Providence college before becoming too ill to attend , and sticking to his motto which was to have "NO COMPLAINTS" about how he was doing.
While dancing at the very prestigious Edge Performing Arts Center in Los Angeles when she was 15 years old, Chelsea Wagner felt terrible pain in her left ankle which turned out to be Adamantinoma, a very rare bone cancer which ended her hopes for a dancing career. Faced with some very difficult treatment and its after effects, Chelsea, now 15 years past her diagnosis, is healthy and is working on her next dream as the Associate Director of the National Pediatric Cancer Foundation to help and mentor other pediatric cancer patients.
Just 2 days after playing 4 soccer games on a Saturday afternoon in January of 2007 and leading his travel team to a Pennsylvania State Championship, 14 year old Andrew McDonough had a septic shock, was in cardiac arrest, and was diagnosed with Acute Myeloid Leukemia. Never being able to even leave the hospital, Andrew passed away just 167 days after his diagnosis.
Andrew's father Joe will talk about how life changed so quickly for Andrew and the McDonough family, and how the B Positive Foundation that Joe founded has kept Andrew's memory alive and done so much to help the cause of Pediatric Cancer.
Amanda Tallman passed away from Acute Lymphoblastic Leukemia in 2012. Her mother Lorraine will talk about Amanda's life and her goals to design a unique clothing line to help her peers who were undergoing treatment for cancer. After her passing, Lorraine created the Amanda Hope Rainbow Angels Non Profit, in which COMFY COZY shirts were created for these kids undergoing chemotherapy. 10,000 Pediatric Cancer Patients from around the globe now have the benefit to wear these shirts, which help ease the burden of their chemo treatment.
Art Therapy has proven to be a very successful activity for Pediatric Cancer patients undergoing treatment for cancer. Tracy Councill will talk about this program which she started back in1991. 30 years later, it has helped thousands of kids look forward to having at least one part of their protocol be a fun and enjoyable activity to participate in.
This program has now expanded from 1 clinic to 8 clinics in hospitals across the United States and the fact that it is based in Washington D.C. has allowed both Democratic and Republican members of Congress to see how this program works. Each year, members from each party are invited to , and attend a celebration of the success of this program and how it helps these kids in so many ways. . For one night at least, partisan politics are put on the back burner and this Pediatric Cancer cause is celebrated as it should be.
Child Life professionals play a critical role in the lives of Pediatric Cancer patients as Bailey Kasten and Kelly Wagner will discuss in today's podcast. Among their many responsibilities, they need to work with the emotional and anxiety issues that patients and their families experience, along with making sure that these children feel safe and comfortable. They also need to be prepared to deal with the most difficult issues of bereavement should they be needed, as they are in close and direct contact with all family members during their child's hospital stay
Natalie Smith is now healthy as this 21 year old approaches her graduation from Georgetown University. Natalie would like to be a Pediatric Doctor so medical school will be in her future. She is also a very creative writer and please let me know if you would like me to send you a story that she has written , as I was unable to attach it to my show notes. I can be reached at putting4patients@gmail.com.
Dene is trying to help present and future Pediatric Cancer patients with her Friends For Life Guild that concentrates on funding research for cancers that are not that well known . She wants to do what she can to help in the fight to find treatments that are not as toxic as current or past treatments, which will help these patients deal with possible side effects in future years.
After an 82 month battle with Neuroblastoma, Vickie Buenger's daughter Erin passed away in 2009 when she was 12 years old. Vickie will talk about her daughter who up to the last week before her passing, was still involved in trying to raise money for the disease of Neuroblastoma, and was still trying to live the most productive life possible .
Vickie is now the President of the Coalition Against Childhood Cancer and will speak about her daughter and this organization, which is doing so much to raise awareness for these Pediatric Cancer patients who need so much help.
HELP AND HOPE HAPPEN HERE has been featured by Feedspot https://blog.feedspot.com/childhood_cancer_podcasts// as one of the top 25 Childhood Cancer Podcasts which is nice to hear. A major reason is that I have been fortunate to interview some very interesting guests with compelling stories to share involving their experiences with Pediatric Cancer.
One of those guests is Mindy Dykes, who will talk about her son Connor's incredible journey which began when he was diagnosed with a brain tumor when he was 6 weeks old. Connor went through a 4 1/2 hour surgery in which he was not expected to survive and now, at the age of 14, is the oldest living survivor of a congenital glioblastoma.
In today's Podcast, Mary Beth Collins will talk about her son Joshua's battle with Neuroblastoma, which started just before his 2nd birthday. Now 24 years old and doing well, Joshua went through many side effects because of his treatment, which multiplied during his adolescent years and beyond. Mary Beth will talk about the critical need to focus on Pediatric Cancer Survivorship, as many problems persist for these kids even after the 5 year calendar to be cured has passed.
Janet Demeter's son Jack passed away from Diffuse Intrinsic Pontine Glioma or DIPG just before his 4th birthday in 2012. Janet will talk about Jack and her efforts to get the plight of this disease in the minds of Congress with her DIPG Advocacy group that she started in 2017. Janet will also speak about her worldwide internet radio show entitled Childhood Cancer Talk Radio
Joe Andruzzi played in the National Football League for 10 years and won 3 Super Bowls with the New England Patriots in the early to mid 2000's. Joe was diagnosed with Non Hodgkin's Burkitts Lymphoma in 2007. In 2008, Joe and his wife Jen started the Joe Andruzzi Foundation as a way to assist families in need who are going through difficult times with their battle with cancer.
This Foundation has now helped 30,000 patients in New England, giving out $7.5 million dollars in grants, many as much as $800.00. These grants are used to help pay household expenses such as rent, mortages, utilities, cable bills, water bills, gas bills, and other essentials.
Joe and Jen have found a true niche in helping these families afflicted by cancer,
Dr. Mark Kieran was the Director of Pediatric Neuro Oncology at the Dana Farber Cancer Institute from 1997 to 2018, with his primary focus being on pediatric brain tumors. Dr. Kieran will talk about some of the different types of these tumors and will talk about the differences between pediatric and adult brain tumors. With pediatric brain tumors being the leading cause of childhood cancer deaths, Dr. Kieran will also discuss the progress that is being made in helping to find new treatments and solutions to this very difficult type of pediatric cancer.
The indomitable Mariah Forster Olson was diagnosed with Neuroblastoma in June of 1980 when she was a year old. Mariah was proclaimed "cancer free" by her doctors at the age of 8.
But that was really only the beginning. Now, some 40 years later, Mariah has had 47 surgeries, approximately 100 medical issues, and on a good day, her pain level is a 6 and averages an 8, with 10 being the highest pain level possible. For the past 27 years, Mariah has been in pain every day of her life.
Through it all, Mariah has managed to focus on her goal of trying to help other Pediatric Cancer Patients with her dedicated work for a number of Pediatric Cancer Foundations and Organizations, including the Coalition Against Childhood Cancer in which she serves as the Survivorship Liaison.
Mariah is truly one of a kind.
Jan Ross is the Director of the Dana Farber- Jimmy Fund Running Program. In today's Podcast, Jan will talk about the beginnings of this program which was started as the Dana Farber Marathon Challenge in 1990, after a Harvard freshman decided that he wanted to raise money in memory of a friend, also a college freshman, who had passed away from cancer. With the help of his former coach, 1976 Boston Marathon winner Jack Fultz, he ran the marathon and raised $35,000. The Marathon Challenge has now raised $100 million dollars and has been joined by the BAA 5K, the Falmouth Road Race, the BAA Half Marathon, and the Run Any Race program, and those events combined with the Marathon Challenge, have raised $130 million dollars for the Jimmy Fund and Dana Farber.
Vicki and Peter Brown lost their son Mattie to Osteosarcoma at the age of 7. Vicki and Peter talk about Mattie's difficult battle with this disease before his passing, and then talk about the Mattie Miracle Cancer Foundation , which they started in his memory.
This foundation is the only National Non Profit Foundation which is dedicated to Psychosocial Awareness, Advocacy, Support, and Research of Childhood Cancer. As the Brown's have said many times, "It is not just about the medicine"
In today's Podcast, Alan Osit will talk about his son Jacob, who passed away in 2007 after a 6 year battle with Neuroblastoma. Although Jacob has now been gone for 14 years, Alan and his family still honor his memory with their Golf Fore The Kids Golf Tournament. This tournament has raised $870,000 since the tournament began in 2003 and is contributing to helping the lives of Pediatric Cancer patients who need it so much.
In today's HELP AND HOPE HAPPEN HERE Podcast, Barbara Anderson will talk about her son Jude's battle with Acute Lymphoblastic Leukemia, which Jude was diagnosed with when he was 18 months old. Barbara will detail a journey which saw Jude travel from his home hospital in Tucson Arizona , to Children's Hospitals in Minneapolis, Seattle, and Philadelphia before his home doctor in Arizona was awarded a grant by the Leukemia and Lymphoma Society. This grant led to a successful procedure and the eventual return to health for Jude, who is an active 8 year old.
Barbara is now an Ambassador for the Leukemia and Lymphoma Society and will talk about their Children's Initiative.
Ginger Diamond is a true activist in the cause of trying to help Pediatric Cancer patients. In today's HELP AND HOPE HAPPEN HERE Podcast, Ginger will talk about the many foundations and organizations that she works with and the various roles that she tries to fill as she does whatever she can to make the lives of these kids as pleasant as possible. Ginger has a particular passion for the Make A Wish Foundation and will give her thoughts on that very philanthropic organization.
Genetic Testing and Genetic Counseling are becoming an increasingly important part in the fight against Pediatric Cancer. In today's HELP AND HOPE HAPPEN HERE Podcast , authors Meagan Farmer and Dr. Nathaniel Robin do an excellent job in talking about Genetics and how the study of this science can affect both children and their families as they deal with the many aspects of Pediatric Cancer
Jack Christianson was diagnosed with the genetic disorder of Down Syndrome shortly after he was born. Then at the age of 5 , he was diagnosed with Acute Lymphoblastic Leukemia. Jack's mother Debbie talks about everything that Jack has been through including a cancer relapse at the age of 10, and many other physical issues that Jack has successfully battled through. Now 15 years old, Jack's story is one of hope, inspiration, and determination.
When a friend's newborn son was diagnosed with Neuroblastoma just days after he was born, Jen Marchetti decided to ride in the Pan Mass Challenge as a way to help raise funds in his behalf . Little did she know that she would be diagnosed with a rare condition called Pheochromocytoma shortly before her ride was to begin. Despite Jen's doctor telling her that she could suffer a heart attack or stroke if she rode her bicycle in the event , Jen decided to participate in the first day of the ride in which she covered 88 miles. Jen's story is an extraordinary one and shows how dedicated a person can be who is willing to test the limits in trying to help these kids who need and deserve much better lives.
Justine Darmanian is the Director of PMC Kids Rides, a bicycle fundraiser that is open to anyone from the ages of 2 to 15 years old, and which is an important part of the Pan Mass Challenge. Justine will talk about this event in which in the year before Covid, saw 4500 kids participate from 25 Massachusetts communities and raise $1 million dollars. It is a great way for kids to enjoy a really fun day, while at the same time raising badly needed funds for cancer patients who need so much help.
Mateo Goldman was diagnosed with Acute Lymphoblastic Leukemia in 2016 at the age of 8. His journey was highlighted in a Boston Globe Magazine cover story on December 27th of last year, a journey which included very difficult treatment and two bone marrow transplants. His last transplant took place in October of 2020, just 4 months ago and his latest scans taken this past December, all turned up clean. Mateo is a great example of the resiliency and positive attitude that is both needed and shown by these Pediatric Cancer patients.
10 year old Ruby Kaufman was diagnosed with Rhabdomyosarcoma in 2015. After one year of grueling treatment , Ruby decided that she wanted to help other kids who were diagnosed with some type of cancer so she created a fundraiser called Ruby's Dance Till You Drop. That fundraiser raised $72,000. Eventually, through the efforts of Ruby's family, the Rally Foundation, and Dr. Sam Volchenboum, a grant was awarded with the money that Ruby raised from her fundraiser to help with research in the fight against this cancer. This initial grant proved successful, and now millions of dollars in grant money has been received because of the success of the first grant, and has been used to create one of the largest Data Research Systems to help in the overall fight against Pediatric Cancer. This story is a great win for everyone involved.
Meet Brittany Ross, who was known as the "MIRACLE KID " while she was being treated at Georgetown University Hospital in 2001 for Acute Myeloid Leukemia at the age of 16. Brittany was given 3 weeks to live after her diagnosis and if she survived that, her continuing chances of survival ranged from 5 to 15 percent. Brittany went 275 days without an Immune System during her ordeal, and on January 17th of this year, she celebrated her twentieth year of being declared cancer free. Brittany's story is truly one for the ages.
Meet Amy McCallum, who is the Director of Jimmy Fund Golf. This fundraiser is the largest charity golf program in the country and has raised $140 million dollars in its 38 years of existence, including 8.2 million dollars in 2019. Amy will speak about the 150 tournaments that Jimmy Fund Golf hosts each year, except for 2020 when the Covid Pandemic allowed only 20 tournaments to be held along with 30 adjunct events. Even so, this program was still able to raise nearly 5 million dollars for the Dana Farber Cancer Institute.
Meet Tara Daniels, who was first diagnosed with Acute Lymphoblastic Leukemia in 2009 at the age of 16. Tara is now a 3 time cancer survivor, having relapsed for the first time in 2012 and the second time in 2016. That relapse included a bone marrow transplant. As she approaches the 5th year anniversary of her bone marrow transplant later this year, Tara is doing well and has quite a story to tell about her journey over the past 12 years.
Meet Michael and Robby Surprenant who will talk about Robby's 1 in a hundred million diagnosis of a cancer known as Gastrointestinal Stromal Tumor, which he was diagnosed with in 2014 at the age of 11. This cancer is normally diagnosed in people 60 years old. Both father and son will detail a long journey that has been a successful one as Robby has persevered through a difficult time during the last 7 years.
Meet Dr. Doug Hawkins, who is the Group Chair of the Children's Oncology Group, which the only international organization that focuses exclusively on children's and adolescent cancer research. Dr. Hawkins will speak about the many initiatives and innovations that are helping children all across the world have a better chance to live longer and healthier lives than many of their less fortunate peers were able to.
Meet John Berardi who is the Director of the Jimmy Fund's Little League Program. This program was founded in the 1980's by John's father George, along with former Red Sox players Mike Andrews and Rico Petrocelli. Kids who are in the age group of 7-13 years old have a chance to play either baseball or softball in the summer , while at the same time having the opportunity to raise money for Pediatric Cancer patients who have to battle with their own individual cancers each and every day.
Meet Dr. William Evans from St. Jude Children's Research Hospital. Dr. Evans is the former Director and Chief Executive Officer of St. Jude from 2004-2014, and has been an active participant with one of the most important Pediatric Cancer hospitals in the world for the past 42 years.
Meet Lisa Cleary:
Lisa is the mother of Nick, who was diagnosed with high risk Neuroblastoma at 22 months old. After undergoing a difficult treatment process at Children's Hospital in Boston, Nick is doing well and is now a 7 year old 2nd grade student. Lisa speaks about the many challenges that Nick has faced and the good news that he is looking at a promising future.
Meet Dean Crowe:
Dean started the Rally Foundation as a way to help in this ongoing Pediatric Cancer fight. Dean will talk about the 20 million dollars that her foundation has now given out in grants to Pediatric Cancer researchers and oncologists, her Rally Kids programs, her total passion for helping all of these patients, and the fact that 93 cents out of every dollar raised goes towards their Mission of defeating all forms of pediatric cancer.
Meet Ruth Hoffman:
Ruth is the Chief Executive Officer of the American Childhood Cancer Organization, which is located just outside of Washington, D.C. This is the largest grassroots Pediatric Cancer organization in the United States, and was founded by a group of influential parents who met while their children were all undergoing treatment for various forms of cancer at a local hospital in 1968. Ruth talks about joining this organization as its CEO in 1998 and how it has evolved into such an important piece of this fight to eradicate Pediatric Cancer.
Meet Kathleen Ruddy:
Kathleen is the Chief Executive Officer of the St. Baldrick's Foundation which is located in Los Angeles. Kathleen will talk about the concept of head shaving as a way to raise money for Pediatric Cancer and how this foundation has grown from its initial event on St. Patrick's Day of 2000 which raised $104,000, to the point where it has now given out $317 million dollars in research grants. The St. Baldrick's Foundation is now the largest private funder of of Pediatric Cancer research grants in the United States.
Meet Leanne Masten:-
Leanne will speak about her 4 year daughter Addi, who was diagnosed with Stage 4, High Risk Neuroblastoma in 2018 at the age of 2. Addi has fought a heroic battle against the ravages of this very difficult Pediatric Cancer, and now she is cancer free and healthy. Addi's journey has inspired over 270,000 people to follow her on facebook
Meet Zack Blackburn: Zack is the Director of the Boston Marathon Jimmy Fund Walk. This walk is the largest participatory event that the Jimmy Fund sponsors and is the biggest charity walk in the United States from a fundraising standpoint. The event annually raises about 8 million dollars each year and approximately 8500 people participate in it. Zack will talk about how the participants walk 26.2, 13.1, 6.2., or 3.1 miles from either Hopkinton, Wellesley, Newton, or the Dana Farber to Copley Square, where this great celebration continues
Meet Jeanine McManus: Jeanine will talk about her initial nursing experiences as a travel nurse including her time spent at Bethesda Naval Hospital, her 11 years of volunteering during summers at the iconic Hole In The Wall Gang Camp, and finally putting her roots down at Children's Hospital here in Boston. Jeanine is a Procedural Nurse who specializes in Procedural Sedation with pediatric cancer patients who mainly are being treated for blood cancers or brain tumors.
Meet Michael Dotto: Michael was first diagnosed with Hodgkins Disease in 1976 at the age of 16. Since that time, he has battled a number of health related issues, many of them caused, at least in part, by the amount of radiation he received during his first bout with cancer. Michael has made "giving back" a major part of his life as he has walked the entire 26.2 miles of the Jimmy Fund Walk for each of the past 32 years, and started a major Jimmy Fund Wine Tasting fundraiser called Raise Your Glass For Jimmy. Michael talks about these experiences plus having to once again confront another battle with the enemy known as Cancer.
Meet Bob Horan: Bob was a legendary and beloved volunteer on the oncology ward at Children's Hospital in Boston for almost 17 years. "Tuesday Bob" as he was affectionally known as, talks about his experiences visiting thousands of Pediatric Cancer Patients and their parents and his love for Children's Hospital
Meet Liz Scott: Liz is the co founder of the Alex's Lemonade Stand Foundation. This foundation was started by Liz and her husband Jay after their daughter Alexandra passed away from Neuroblastoma in 2004, at the age of eight. Alex, as everyone called her, decided at the age of 4 to start a lemonade stand to help kids who had cancer. Just two weeks before her passing, she achieved her goal of raising one million dollars with this lemonade stand concept. This foundation has grown from a million and a half dollars when it was started in 2005, to a foundation that has raised over 200 million dollars to help in this Pediatric Cancer Fight. Liz tells a remarkable story of her amazing daughter Alex and a foundation that has benefited so many Pediatric Cancer Patients.
Meet Casey Wall : Casey is a Nurse Practitioner at Children's Hospital and Dana Farber. She will talk about her early days as nurse at Children's Hospital in Philadelphia, her time at the Columbia University Medical Center where she worked in helping Bone Marrow Transplant patients, and her role now at Children's where she works with Pediatric Cancer patients who have solid tumor cancers.
Meet Dr. David Shulman: Dr. Shulman is a Pediatric Oncologist at Children's Hospital and Dana Farber who will speak about the 3 different categories of cancer that he treats, about the clinical trials he is involved with, his role in working on a collaboartive with a hospital in Rwanda, and how he sees the future of Pediatric Cancer
Meet Jill MacDonald: A Nurse at the Jimmy Fund Clinic who talks about her experience as a travel nurse, her role as a Triage Nurse, her role in working on quality improvements, and her role in direct patient care
Meet Lisa Scherber: Lisa is a true Icon of the Jimmy Fund. She is the Director of Family and Patient Programs and is in charge of running the Jimmy Fund Clinic. Lisa talks about her true passion for these kids in helping their experience during cancer treatment be as pleasant as possible by initiating many programs that have helped in this process.
Meet Nicole Lamontagne, who is a lead Social Worker for the Pediatric Cancer Patients who come to Children's Hospital for their Inpatient stay, as they receive their treatment for cancer. She describes her role, which is a very difficult and vital one that helps these kids and their families deal with the emotional side of their illness
Meet Kari Mchugh: The Executive Director of the Dunkin' Joy in Childhood Foundation. She talks about the many programs in their foundation that help children with hunger and illness, including Pediatric Cancer
Meet Ginger and Ryan Comeau: They will discuss Ryan's successful battle against Non Hodgkins Lymphoma which Ryan was diagnosed with at age 16
Meet Dan Shaughnessy : Dan is a very well known award winning Sports Columnist and author from the Boston Globe who will talk about his daughter Kate's successful battle with Acute Lymphoblastic Leukemia in the mid 1990's. He will also discuss the kindness showed to Kate by legendary Red Sox players Roger Clemens and Ted Williams and their dedication to the Jimmy Fund
Meet Dr. Katie Janeway. She is a well known and well respected Pediatric Oncologist at Dana Farber and Children's Hospital who talks about her specialty which is Pediatric Sarcoma with a concentration on Osteosarcoma. She is also a cancer survivor and talks about that experience as well.
Meet Mark Myers: He is the Director of Communications for a National Organization entitled Cure Childhood Cancer. He speaks about what this organization does to help Pediatric Cancer Patients and also talks about his daughter Kylie, who passed away from Ewings Sarcoma, just before her 13th birthday.
Meet Tracey Glynn - A Teacher and Faculty Advisor at Newburyport High School who talks about her students and their involvement in Putting 4 Patients and how it motivated them to support the Jimmy Fund.
Meet Eric Grund: A Cancer Survivor and Founder of Recycled Computers 4 Cancer which is a non profit company that distributes computers to cancer patients and money to cancer organizations.
Meet Jeff Morris- A father who tells the story of his 3 year old daughter Ella, who has gone through a very rare form of leukemia- and is doing great.
Meet Charlie Capalbo: An incredibly courageous and inspirational Pediatric Cancer survivor. Charlie has a very compelling story to share.
Meet Colleen Cormier. Former Dean of Students and Student Council Faculty Advisor at Norwood High School.
Meet Erica Murphy. Erica is the mother of 9 year old Emma, who was diagnosed with a Wilms Tumor which is a Kidney Cancer at the age of 6 years old. Now fully healthy, Erica talks in great detail about Emma's successful battle with this difficult cancer.
Meet Dr. Allison O'Neill. Dr. O'Neill is a very highly accomplished oncologist at Children's Hospital and Dana Farber. She talks about her career and passion for Pediatric Cancer on my first Podcast interview.