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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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
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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.
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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.
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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.
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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
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