This Podcast is going to be about Pediatric Cancer and the need to keep the awareness of it in the public eye. The ultimate goal is to keep people wanting to donate money to help these kids who have an insidious disease that they did not and do not deserve.This is going to be primarily an interview show in which I will talk with oncologists, parents, patients who have recovered, and many other people who have a stake in Pediatric Cancer and care about this cause. To Support my Podcast, Here is the link. It is http://danafarber.jimmyfund.org/goto/pediatricpodcast
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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.