Help and Hope Happen Here

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.