The Deep C

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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Alexx Friesen shares her experience as a child going through cancer treatment and how her parents supported her. She emphasizes the importance of giving children space to feel their emotions and validating their experiences. Alexx also discusses the role of hope and comfort in the context of pediatric cancer. She highlights the need for parents to show their human side and be supportive while also taking care of themselves. Alexx shares her perspective as both a former patient and a clinician, emphasizing the importance of support and self-advocacy skills learned during treatment.

Alexx discusses the experiences of childhood cancer survivors and the importance of providing comfort and support to children going through treatment. She explores the challenges of growing up with cancer and the impact it has on a child's development. Alexx shares personal stories from her own childhood cancer journey and highlights the need for open communication and age-appropriate explanations for children facing medical challenges. She also discusses the role of hope and comfort in supporting families and the importance of giving children a sense of control and autonomy in their treatment.

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Claire from Strong Like Sloane talks about how her daughter Sloane was diagnosed with stage 4 neuroblastoma when she was 5 years old and how Sloane's diagnosis threw her into a place where she felt compelled to use her marketing and advocacy skills to fight for other families just like theirs. Claire discusses her coping mechanisms and advocacy work. She shares how she turns her pain into purpose and finds hope in the midst of difficult circumstances. Claire emphasizes the importance of giving oneself credit for showing up and choosing to cope. She encourages parents to find what fuels them and turn their pain into purpose, whether it's through advocacy, self-care, or other activities. Claire also highlights the strength and capability that parents discover when faced with challenging situations. Claire shares her journey of finding purpose and hope in the midst of her daughter's cancer diagnosis. She emphasizes the importance of channeling the strength and focus that comes from such a difficult experience into something positive that can help others. Claire discusses the therapeutic power of writing and how it has helped her cope with her emotions. She also talks about the Strong Like Sloan initiative and its goal of raising funds for pediatric cancer research and treatment. Claire shares her experience organizing the Heartbeats for Hope event and the Calgary Marathon, which raised over $100,000 for pediatric cancer.

@stronglikesloane

Why Write Love Poetry in a Burning World by Katie Farris

To train myself to find, in the midst of hell

what isn’t hell.

The body, bald, cancerous, but still

beautiful enough to

imagine living the body

washing the body

replacing a loose front

porch step the body chewing

what it takes to keep a body

going –

This scene has a tune

a language I can read a door

I cannot close I stand

within its wedge

a shield.

Why write love poetry in a burning world?

To train myself, in the midst of a burning world

to offer poems of love to a burning world.

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Today we chat with Rose Marie and her two incredible sisters Lisa and Tonia about caring for her while she cares for her son during his cancer treatment. Rose Marie’s 16yr old son was diagnosed with osteosarcoma in December 2023, which means they are still in very active treatment. Her son’s tumour was on his lower right tibia and, despite Rose Marie researching and trying everything under the sun to prevent it (and I mean everything) his lower right leg had to be amputated.

This conversation really made me see caregiving in a whole different way. For the first time it was so clear how MUCH our family, sisters, brothers, parents, not only WANT to help, but that it brings them endless joy and a feeling of genuine purpose when we allow them to. So often as parents going through this we aren’t even thinking about ourselves, our needs, if we’ve eaten or showered or changed our clothes - and we have such a hard time accepting help because we forget that we even exist. All eyes are on our child and what they need, so it feels counter intuitive to accept any help for ourselves. It was so beautiful to hear how desperate Rose Marie's sisters are to help HER. Yes, of course her son too, but they want to carry Rose Marie while she carries her son.

Please share this episode with your family, your siblings, your circle. There are some expletives in this episode, Rose Marie and her sisters are passionate and very comfortable, as they should be, so just a heads up there is cursing throughout. If you’d like a cleaned up version of our chat, just send a message to [email protected] and we'll send one your way.

So, let's dive deep with Rose Marie, Lisa and Tonia.

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Kayleigh Kennedy is a cancer mom, mindset coach and the powerhouse behind Limitless Coaching where she helps clients break free from their limitations and unlock their full potential by giving them tools and practices to get them “unstuck” - but how do we apply the same tools to our kids' cancer diagnosis?

The answer is GRATITUDE. Yes, finding things to be grateful for with a cancer diagnosis, as counter intuitive and impossible that might seem. If the idea of finding things to be grateful for is a hard pill to swallow (like it definitely was for me) then let Kayleigh help to explain it. The power in shifting our mindset from a dark and scary place to a place where we have opportunity to grow and strengthen is a way we can show ourselves love and support during the really scary and impossible moments of our kids' treatment.

Kayleigh is PROOF that we can apply simple practices to getting through this dark place in tact, and that no matter how much effort it takes us to find some light down here, it takes way more effort to stay in the dark.

Kayleigh can be found on instagram @thekayleighkennedy or [email protected]

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Jess will tell you she draws all her strength from her daughter Addy. In our conversation, Jess shares how Addy's force and unstoppable energy impacted everyone in her life, and continues to be shared today.

When Addy was 13 she was diagnosed with angiosarcoma, a very rare cancer, especially in children. Addy went through nine months of treatment and passed two days after her 14th birthday. During her treatment, Addy centred her focus on helping other kids, asking Jess to start raising funds and awareness for kids just like her.

Jess committed to following through on Addy’s wishes, starting Team Addy that, since March 2022, has raised $387,000 for sarcoma research. They’ve held 2 annual Family Fun Day events, as well as a “Concert with Addy-tude” and many, many community and 3rd party events and initiatives from their “army”.

A beautiful documentary called Team Addy was produced by the Ontario Basketball Association where you will meet Addy’s family and coaches and start to get what I’m talking about when I say there is FORCE and energy and love that surrounds Jess and everyone in Addy’s world.

And if you know Sick Kids Hospital, you likely know of their most recent initiative Precision Child Health that is changing the game in paediatric care - and this massive new campaign was launched with a crystal ball that is inspired by Addy and a conversation she had with her brilliant oncologist Dr Malkin that you’ll hear Jess share in our chat.

Jess has found a way to channel her love for Addy into a strength and purpose, and with that kind of love behind her, she’s unstoppable.

https://www.teamaddy.ca/

https://www.teamaddy.ca/events/family-fun-day

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Rachelle’s daughter was originally diagnosed with Wilms at 16 months old, and then relapsed at 3 years old in a new city without the family and support system they’d had for her daughter’s initial treatment.

Rachelle candidly and honestly talks about the need to “claw” together a community of cancer parents to help them survive her daughter’s treatment. We talk about connections, finding comfort in other oncology parents, and how it feels when a bereaved parent supports families of NED kids, and the complicated emotions that come up of comparative suffering and survivors guilt.

This conversation spans different topics that will all sound familiar to oncology parents, not necessarily because you’ve had them out loud before, but because you’ve thought and felt every single word - and that’s what makes Rachelle and her deep insights and take away’s so valuable and important to hear.

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When Taryn's daughter June was 8 months old, she was diagnosed with Neuroblastoma. After an aggressive treatment of chemo, surgery, tandem stem cell transplants and radiation, June passed at 18 months old. Just over two years later, Taryn shares all the ways June cracked her open and how being June's mom helped her discover her purpose, and reconnect with her identity through poetry and writing.

Taryn shares her magnificent poem A Good Mother from her blog Carrying June where you'll also find brilliant and beautiful reflections on life after loss, childhood cancer, and motherhood.

https://carryingjune.com/

https://carryingjune.com/blog-1-2/z7o08aqqcsyltbyrin5xqcsakboprg

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Dave and Kristy Costa lost their only child Lacey to pediatric melanoma less than two years ago. In our conversation, they share what it was like to be parents in the cancer community with such a rare diagnosis, and how the framework for Lacey's treatment didn't follow typical cancer treatment, leaving them to chart their own course from the very beginning.

Dave and Kristy go deep into their reflections of carrying Lacey through her treatment, and generously share their honest and real account of what they thought, and what they felt - every step of the way. We discuss the language around childhood cancer and what words like "hope" and "miracles" feel like when you're on the flipside and your child doesn't get their "miracle" - does that mean they were less deserving? We talk about landmines and how simple tasks like making dinner or seeing a back to school display can be paralyzing, and perhaps the most profound question we've heard on this podcast to date from a bereaved parent - am I still a mother?

Every single word from Dave and Kristy is unforgettable and will leave you feeling seen, supported and stronger than before thanks to their willingness to go deep into the places we've all been, but may not have the words to describe. Dave and Kristy do it for us.

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