The Deep C

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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Leahann’s son was diagnosed with stage 3 nodular lymphocyte predominant Hodgkins lymphoma when he was 16yrs old. Like a lot of us, it’s so hard to talk about what this is all like during treatment, so we often find ourselves after our children are done frontline trying to make sense of what just happened. So many of our chats start here, and today’s is no exception.

Leahann and I jump right in to how it felt the day she left the hospital after her son rang the bell, and how confusing it was. You’ll hear Leahann call it an “attack on her senses” and I couldn’t agree more. When you’re in treatment, your senses are operating at a whole other level. Everything is heightened and hyper vigilant, and we get so used to being in that state of adrenaline. As soon as Leahann left the hospital after the bell ringing, it was like her body was slowly shedding and loosening from this heightened state and for the first time since diagnosis, her nervous system was trying to regulate - and that felt strange and abrasive and foreign.

This is such a great chat with an incredible mom who is SO easy to talk to, and feel calm and safe and warm beside. We shared a coffee during this chat, sitting at her table that made me feel so comfortable and seen and not alone. I invite you, wherever you are, whether it’s bedside with your child or sitting in a waiting room, or driving, or maybe you have a chance to be outside for a walk - wherever you are, to let yourself feel like you’re sitting with us and let yourself know that wherever you are in your child’s treatment, we’re right beside you.

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Sandra’s son Isaiah was born with a heart condition and Down Syndrome, and at 14 months had open heart surgery. Just before he turned 3, he was diagnosed with ALL, in the height of covid, and because he doesn’t communicate through words, Sandra and her husband navigated Isaiah’s treatment very differently than a family whose child could express how they felt, what hurt, and what they needed. All of this during lockdowns, having to quit jobs, and raising another child at home. Sandra shares her story with so much truth and honesty, you are going to love her as much as I do in about 5 seconds.

To think the bright light that bursts out of Sandra came easily, is actually the exact opposite. Her light came from having to claw her way through darkness towards it. Her joy came from having to force herself every day to find it, no matter what. Her faith and her hope came from being angry at God, and working through that painful anger towards finding peace with Him.

This chat is so inspiring, I am so grateful to be able to share it with you, so let’s dive deep with Sandra.

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In 2018 Steve and his cofounder Randy started YOGAPALOOZA, a 24 hour yoga fundraiser in support of their local children’s hospital CHEO in Ottawa, Ontario. They have since raised over $370,000 with all funds supporting childhood cancer research, a cause extremely close to Steve’s heart. When his son Cole was 5 1/2 years old he was diagnosed with stage four neuroblastoma. Throughout Cole’s treatment, Steve attributes his yoga and meditation practice, as well as his intention to find gratitude wherever he could, as his motivation to stay energized and intact during the heartbreak and fear of his sons cancer. Our conversation today begins with Cole’s diagnosis and treatment, and how Steve felt compelled to support childhood cancer research after Cole’s successful treatment was complete. We chat about giving back, funding critical research and the exciting new developments using zebra fish to customize cancer treatment for our kids. 

You can find out more about Yogapalooza happening in Ottawa this September 21st & 22nd, 2024 at 24yryogapalooza.ca where you can donate, register and learn more about this incredible organization. 

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This conversation provides a raw and honest look at the emotional and psychological toll of caring for a child with cancer and dives deep into the topic of medication to manage anxiety and depression.

In this episode, Amie and Sam discuss the importance of self-care and seeking help while navigating the challenges of their child's treatment and life post treatment. They emphasize the need for parents to prioritize their own well-being in order to better care for their children. They share their experiences with medication and therapy, highlighting the positive impact it has had on their mental health. They also discuss the power of connecting with other oncology parents and the support they provide. The conversation concludes with a reminder that it's okay to ask for help and that there is a strong community of parents who understand and can relate to the challenges of childhood cancer.

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