In today’s episode, medical mom and mindset coach Cortney Given shares her experience as a “heart mom” to daughter Zola who was diagnosed with hypo plastic left heart syndrome during Cortney’s pregnancy, and required her first heart surgery when she was only 36 hours old. Cortney has since become a coach and leader in the medical parent community, supporting parents through their child’s diagnoses and complex needs with practical and well earned tools to help us hold our hope, and our fear. Cortney is also the host of the Mindset for Medical Moms podcast where she shares so many excellent stories and strategies for parents to make this journey more safe for our mental, physical and emotional health.

You can find Cortney @cortneygiven and her podcast Mindset for Medical Moms everywhere you listen.

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This conversation delves into the emotional and practical challenges faced by two mothers, Jenna and Alex, as they navigate their children's leukemia diagnoses. They share their experiences from the initial diagnosis to the ongoing treatment, highlighting the shock, fear, and isolation that accompany such a journey. The discussion emphasizes the importance of connection and support among parents in similar situations, illustrating how their friendship has provided strength and understanding during one of the most challenging times in their lives.

In this heartfelt conversation, Sam, Alex, and Jenna explore the profound connections formed during the challenging journey of childhood cancer treatment. They discuss the anticipatory fears parents face, the importance of finding community, and the unexpected joys that can arise amidst the pain. The dialogue emphasizes the duality of experience, where sorrow and growth coexist, and highlights the significance of vulnerability in forging deep connections. As they share their stories, they reflect on the lessons learned and the hope that emerges from shared struggles, ultimately reinforcing the message that no one has to navigate this journey alone.

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In this episode, host Sam Taylor and parent Nicole talk about all the unknowns that come up when your child is diagnosed with a rare cancer that doesn’t respond to all the traditional treatments like chemotherapy and radiation. When Nicole’s son Hayden was 12 years old, he had a bad fall while snowboarding and complained of serious pain in his side that brought them to the hospital. After tests and ultrasounds, Nicole was told that Hayden’s fall had ruptured a15 centimetre tumor on his kidney, diagnosing him with a rare type of cancer called Papillary Renal Cell Carcinoma, typically only found in men over the age of 50. Treatment for Hayden’s cancer was surgery to remove the tumor, and 3 month follow up scans to check for recurrence.

Nicole and Sam talk about Hayden’s rare diagnosis, and how difficult it is to resume a “normal” life when the lingering fear of Hayden’s cancer returning is always present. With no other treatments to try to eradicate his cancer, Nicole talks about how she moves forward with so many unknowns. Sam and Nicole also talk about Hayden’s age, and how he is old enough to understand his cancer and have a lot of questions about it, in particular, asking if he is going to die. This conversation is so important for families who also have rare diagnoses, non traditional treatments and families whose kids are old enough to experience all the unknowns alongside their parents.

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Julie Middleton, founder of Zippaport, shares her journey of her daughter's leukemia diagnosis and how it led to the creation of Zippaport, a charity that provides zippered shirts for kids port access. Our chat covers topics such as the challenges of treatment during the COVID-19 pandemic, the impact of Zippaport on families, and the process of ordering and receiving shirts. Julie also opens up about her own experience as a cancer mom and emphasizes the importance of community and giving back, and how it can be a healing process for parents. Julie also talks about the challenges of hair loss during treatment and the feelings of shame and embarrassment it can bring. She shares her own experience and the impact it had on her daughter. Finally, Julie discusses her daughter's relapse and the roller coaster of emotions that come with it, as well as the importance of self-care and taking time for oneself during treatment.

You can learn more about Julie and her incredible work, and order a shirt, at zippaport.ca

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In this conversation, Sam and Dr. Mike Lang explore the profound impact of caregiving storytelling. Mike shares his personal journey from being diagnosed with Hodgkin's Lymphoma when he was 25, emphasizing the importance of caregiver support and the need for connection among those affected by cancer. They discuss the challenges of identity during treatment, the significance of agency in caregiving, and the transformative power of adventure therapy. Mike emphasizes the value of caregiver storytelling as a means to bridge the gap, allowing caregivers to process their experiences and share wisdom with others. The discussion also highlights his award winning video series 'Caregivers in the Wild,' which aims to support caregivers through shared experiences and storytelling. Ultimately, the conversation underscores the significance of finding hope and connection in the caregiving journey. In this conversation, Sam and Dr Mike Lang delve into the profound themes of caregiving, storytelling, and the elusive nature of balance. They explore how shared experiences can create a safe space for caregivers to express their feelings and insights. The discussion highlights the importance of storytelling in processing experiences and the need for community support among caregivers. They also touch on future projects aimed at enhancing digital storytelling and the significance of hearing others' stories during challenging times.

mikelangstories.com

Caregivers In the Wild

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This chat with Heather was initially intended to talk about the difference between the US and Canadian health care systems and the cost of cancer, but more often than not, our talks veer into areas that go much deeper than what we originally planned.

Heather bravely and vulnerably shares how the financial pressures of her daughter’s treatment for Ewing Sarcoma made her feel like she needed to turn to social media for fundraising based on the success she’d seen when other families shared their child’s cancer journey.

The only caveat, she found, was that the more graphic and intense the photo’s, the more followers a family would have, which equates to more funds. Heather’s daughter wasn’t comfortable with sharing the more sensitive photos during her treatment, so Heather shares it impacted how many followers, and funds, they were able to raise.

This topic is VAST. There are so many opinions and strongly held beliefs when it comes to social media and how we, as a medical parent community, choose to share our child’s cancer.

There is no denying the value of social media when it comes to connecting parents, raising awareness for childhood cancer, and sharing with loved ones and our communities what our family is experiencing. But is there a line? Is there a place where we as parents have to consider what our kids might consent or agree to in the future?

Today we talk about Heather’s line, and what she felt comfortable with sharing. I would love to hear what your line is, and how it makes you feel to share, and what you feel comfortable sharing.

Thank you SO much Heather for starting this conversation with me, I really want to keep having it with all of you.

ALSO! You'll (not in a peaceful way) meet all my dogs in our episode today. They all send their deepest apologies for barking like crazy 🐕💛

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Marie shares her experience of being pregnant and giving birth while her son, Ezra, was undergoing treatment for leukemia. She discusses the common occurrence of parents having a baby during their child's treatment and the complex emotions that come with it. Marie also opens up about feeling jealous of families who have made it through unscathed and the challenges of caring for a child with a chronic condition post-treatment. She talks about the impact of graft versus host disease (GVHD) on Ezra and the ongoing management of his condition.

Despite the difficulties, Marie remains resilient and focused on providing love and care for her children. In this conversation, Marie and Sam discuss the experience of being a parent of a child with cancer and the challenges they face during and after treatment. They reflect on the strength and resilience they have shown throughout their journey and the importance of self-love and self-care. They also discuss the power of advocacy and giving back to the cancer community. Marie highlights the need for more awareness and education around stem cell donation and blood donation. The conversation ends with a discussion about the ongoing journey of parenting a child with cancer and the hope for the future.

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Curtis Vallier is a bereaved dad, a childhood cancer activist, and the podcast host of The Childhood Cancer Perspective where he provides a unique perspective on pediatric cancer from a father's point of view. In January 2020 when Curtis' daughter was six, she was diagnosed with Choroid Plexus Carcinoma Brain Cancer, which she passed from in July 2021.

In our chat, Curtis discusses the lack of representation of fathers in the pediatric cancer community and the societal expectations that prevent them from expressing their emotions. Curtis left his job to focus on his nonprofit Battlecorn and his podcast, using the platform to share stories and connect with others in the community. He emphasizes the importance of authenticity and raw emotion in his podcast, allowing guests to share their experiences without filters. Curtis shares his advocacy efforts to bring attention and funding to pediatric cancer research. He discusses his initial outreach to senators and representatives, the challenges of getting support, and the need to make the cause meaningful for politicians. Curtis emphasizes the importance of creating a tissue database in Wisconsin and utilizing the state's college system for research. He also talks about his persistence in advocating for change and his desire to see his daughter's name on research. Curtis reflects on the regrets and healing process after his daughter's passing and the different ways families cope with grief. Curtis discusses the impact of his organization's care packages and their investment in funding clinical trials for pediatric cancer drugs.

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