Arika Patneaude is a licensed clinical social worker who is the director of bioethics and pediatric palliative care at Seattle Children’s Hospital. She is also a passionate advocate for health equity and awakening to unconscious bias in medicine and the impact it has on underresourced and historically excluded populations. I experienced her passion…

Ashley and Theron are parents of three children, including Viggo Rick, who died at 6 months of complications related to Trisomy 5p. They offer so much wisdom to other caregivers and suggestions to clinicians about what helps (and what hinders) parents of newborns born with very rare, life-limiting conditions.…

Mom Amy and her daughter Lauren's palliative care doctor, Erin, talk about Erin's care of 7-year old Lauren: how she saw her as the full child that she was -- not just a cancer diagnosis -- and how she managed Lauren's 'total pain' during her 3 years of treatment for cancer, including addressing Lauren's fear of dying.…

CPN's Blyth Lord talks with child and adolescent psychiatrist Elena Lister about the importance, value and life-long positive impact of talking with children honestly about illness and death. "What is mentionable is manageable." This far ranging conversation focuses especially on supporting siblings of children who are sick or who have died from il…

Jerris advocated for his daughter Faith from her diagnosis at age 4 with osteosarcoma, through 23 major surgeries, side effects, setbacks, and complications, until her death shortly after her 18th birthday. Towards the end, they met Dr. Bob Macauley who helped get Faith home. Jerris emphasizes the need to create a space for dads as advocates and em…

CPN's interview with Pediatric Palliative Care NP's Luke and Sean, Valley Children's Hospital, Madera, CABởi Courageous Parents Network

Shared Struggles: CPN's Blyth Lord talks with contributing editors parent Ann Schrooten and Dr. Barry Markovitz about their book and the collective wisdom from parents and physicians about the sacred, shared enterprise of caring for children living with serious illness and medical complexity.Bởi Courageous Parents Network

CPN’s Blyth Lord talks with Michelle Moon, a bereaved mom and adult neurologist, about her decision to pursue fellowship in Hospice and Palliative Medicine: what about her experience with her daughter Julianna led to this career pivot and how is it feeling for her as she nears the end of her fellowship and considers her future as a doctor while alw…

Dr. Wynne Morrison, director of pediatric palliative care at Children’s Hospital of Philadelphia, talks with Blyth Lord about what drove the creation of Courageous Parents Network.Bởi Courageous Parents Network

CPN's conversation with mom and writer Faith Wilcox about her experience parenting her teenage daughters Elizabeth and Olivia, following Elizabeth’s diagnosis with Osteosarcoma. Elizabeth died at age 14. Faith talks about how she and Oliva grieved together and separately in the years that followed.Bởi Courageous Parents Network

An audio recording of CPN's In the Zoom Room event on Tending the Adult Relationship with families and psychologist Nancy Frumer-Styron.Bởi Courageous Parents Network

CPN’s Blyth Lord talks with Carla, the mother of Talia who had infantile Tay-Sachs and died shortly before her second birthday, and Robin, Carla’s mother, Talia's grandmother. Theirs is a particularly close relationshipBởi Courageous Parents Network

In this episode, CPN's Jennifer Siedman talks with her son Noah about the days leading up to Noah's brother, Ben's passing. They explore grief, the pressures siblings feel and creating a new family dynamic.Bởi Courageous Parents Network

In this episode, Amy and Ray Miller , parents to Dan, who had Hunter Syndrome and Hailey join CPN’s Jennifer Siedman to talk about surrounding their son Dan with love, family and friends during his final days, their identity as parents and being happy again.Bởi Courageous Parents Network

CPN's interview with Dr. Kate Davidoff on her journey to becoming an attending pediatric palliative care doctor: what drew her into medicine and then working with seriously ill children and their families.Bởi Courageous Parents Network

In this episode, CPN’s Jennifer Siedman talks with Chelsey Klenke Robertson about the challenges and gifts of loving Craig, her brother who had Hunter’s Syndrome(MPS II). Her mother Kris joins them to talk about Craig’s final days, the grieving process and how Craig’s legacy has impacted their careers.…

In this episode, CPN’s Jennifer Siedman talks with Grey Chapin, founder of the BLAIR Connection, a digital resource to support siblings as they experience the challenges of having a terminally ill brother or sister. Jennifer is the mother to three – Noah and Isabelle, and their brother Ben, who died in 2014 from Sanfilippo Syndrome. Grey is the you…

Bởi Courageous Parents Network

Bởi Courageous Parents Network

Bởi Courageous Parents Network

Rebecca Kuzarski, mom to Ethan, Hannah, and Sophia, sat down recently to talk with her friends about the death of her daughter Sophia 5 years ago. Sophia was diagnosed with Leukemia at the age of 3 and unexpectedly died 7 months into her treatment. Listen as this intimate group of friends, these 5 years later, reflects upon how they came together a…

Emma Artinian was diagnosed with Sand-hoff disease when she was 12 months old and she died when she was 3 and a half. Here her mother Becca and her grandmother Christine, Becca's mother, talk about what it was like to love and care for and lose Emma, together. Emma's little sister Ava was born after Emma passed away and has brought new light into t…

Cari is the mother of Dylan and his older sister Jessie. Jessie died in December 2015, at the age of 13, from Sanfillipo Syndrome, a form of MPS. Cari and her husband Matt say that Jessie was the light of their family, always happy, and with a huge smile for everyone, especially her brother who she absolutely adored.…

Sarah is the mother of Emerson. After 7 sleep-deprived but blissful months, Sarah and her husband Steve learned that Emerson had Gaucher Type 2. Gaucher Type 2 is always fatal in early childhood. Sarah shares here the vital role that Courageous Parents Network AND pediatric palliative care played in the months that followed the diagnosis and then E…

Ben is 15 years old and lives with his mother, father and two younger sisters, McKenna and Joelle. Ben was born with Cerebral Palsy. He loves school, the Red Sox, and spending time with his sisters. Makenna and Joelle include Ben in everything they do and have become compassionate advocates for children with disabilities.…

Wendy is currently twelve years old. At the age of three and a half, she contracted an E-coli infection that resulted in a syndrome called Hemolytic Uremic Syndrome which causes kidney, pancreatic and heart failure. Wendy has had many surgeries including a kidney transplant, and she continues to struggle medically.…

Jean and Tim share their family memories and the cancer diagnosis of their only daughter Megan. Megan chose to follow the path of hope and gratitude as she fought against this disease. Her parents supported her wishes and continue to work to live a life that Megan would be proud of. Megan left this physical world August 9th, 2014, two days after he…

Pat is a mother of four and grandmother of ten. Jake is her fifth grandchild, and her daughter is Jake’s mother. As a parent and grandparent who lives close to Jake and his family, she has seen and felt firsthand the challenges, joy and pain of watching her own child struggle with raising a child with complex medical needs, who requires full time, …

Emma is a nursing student at Boston University, who works part time as a personal care assistant for Jake. Emma has cared for Jake for almost two years, since she was in high school, and is one of Jake’s favorite companions. Emma and Jake are close in age, yet worlds apart in their health and ability. With compassion and great instinct, Emma engage…

Ed is a father of four and grandfather of ten. Jake is his fifth grandchild, and his daughter is Jake’s mother. Jake and Ed have shared a special connection since the time that Jake was born. Jake has few words, but one of his favorites is “Papa.” Jake and Papa have great understanding and love for one another, and any time spent with his Papa is h…

Charlotte is a student at Merrimack college, an avid athlete, and an aspiring teacher. Jake and Charlotte are cousins, and are only six months apart in age. Charlotte and Jake have grown up together and from a very young age, Charlotte and Jake have shared a close and loving bond. Inspired largely by her experience with Jake, Charlotte is interesti…

Amanda and Joel are part of a close knit family that grew only closer after their second daughter Sadie was diagnosed with the rare disease CDKL5. Pushing past the fears and learning to live for today, the Laflammes recently welcomed another baby girl, Savahnna, who is healthy and happy.Bởi Courageous Parents Network

Cheerful, laughing Abby was 11 years old when doctors discovered a large cancerous tumor in her shoulder. After a tough battle, Abby died at home with hospice support at age 14. Her loving parents, Amy and Scott, and her younger sister, will forever hold her in their hearts.Bởi Courageous Parents Network

Aislin and EmilyRose have a very special bond. Aislin was diagnosed with cancer as a young child and has lived with the complicated effects of treatment for her entire 17 years. Her best friend, EmilyRose, helps her through the hard times while focusing on their future together. Sadly, Aislin died from complications from her treatment just a few mo…

Kerri Padgett began working with families of seriously ill children, in pediatric palliative care, after her own two year old son, Kai, died of an inoperable brain tumor. Three years later, her 31 year old brother, Pat, also died of an unrelated cancer.Bởi Courageous Parents Network