Afleveringen
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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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Zijn er afleveringen die ontbreken?
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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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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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Traversing the oncology parent landscape can be a very lonely and isolating experience. Most of our family and friends can’t relate, and explaining this place to them is exhausting and can make us feel even more removed from the lives we once knew. But if we look around the hospital waiting rooms and hallways, the little kitchenettes and playrooms, chances are pretty high that we’re surrounded by other parents who feel the exact same way. Yes, we’re exhausted, and the idea of making new friends isn’t anywhere close to what we’re here for, but it’s amazing what can happen when we make the connection with another medical parent because it turns out, we have the power to save each other.
Laura McNabb, a fellow oncology mom and I met in a radiation centre lobby while our kids were both receiving treatment, and within an instant, we bonded and lifted each other up by sharing our experience and just KNOWING the other knew what this all felt like.
Our conversation today is just like listening to two old friends talk about the places they’ve been and the memories they have, except the places are kids cancer hospitals and the memories are of ringing bells and being petrified of post treatment scans - you know, the normal stuff that only oncology parents can relate to.
So get cozy, even if you’re in one of those terrible plastic waiting room chairs (we’re so sorry you’re there, we know they suck) and listen to your two friends Sam and Laura chat about the stuff you can’t bring up at dinner parties or soccer practice. We get it, we know how you feel, and you’re never, ever alone - not when you're with us 💛
Laura's Blog https://www.fromlandtoc.com/
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The transition from parent to oncology parent is fast, it’s sudden, and within seconds we’re thrown into a landmine of medical terminology that feels like it's exploding all around us. Words we’ve never heard, let alone can pronounce, are being referenced to our child and their survival. We’re given treatment plans and chemo protocols, radiation doses, surgical procedures, an entire book of meds from the pharmacy - every word so long, with so many syllables and acronyms, and we have to know what they all mean RIGHT NOW. Sometimes there’s a social worker or a really lovely nurse who will act as your translator, but more often than not, you are in a foreign country, you don’t speak the language, and you’re fighting for your child’s life.
And that’s exactly what happened to Audrey when her 16month old son Levi was diagnosed with an ependymoma. She was suddenly immersed in this new language - a language that is terrifying and heavy and full of questions. SO many questions. And so like all of us, Audrey looked to her doctors to translate, to explain and to educate her on all the different outcomes her son could face - Audrey deserved to know all the words, even the hardest and most painful ones a human being can hear- words like, end of life. Audrey deserved to have these words spoken to her, especially before they had already begun.
Audrey knows her story centres on a rare side effect called radiation necrosis, and she knows what happened to Levi is uncommon, but she also knows that’s why their story needs to be told.
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Denise Bebenek is the Founder, President and driving force behind the Meagan Bebenek Foundation: Creating a Circle of Hope, a foundation that has raised over 6 million dollars to support and fund research for pediatric brain cancers.
In late 2000, Denise’s youngest child, Meagan, was diagnosed with an inoperable and malignant brain tumour. She died six months later, only two weeks past her fifth birthday. That June day, Denise envisioned a real yet symbolic “hug” of the hospital, sending a message to all within that they are not alone.
The vision became an annual 5 km walk and “hug” event, initially known as Meagan’s Walk and now known as Meagan’s HUG, with thousands joining in every year, trekking through the streets of Toronto to the Hospital for Sick Children. At SickKids, they join hands to form the “circle of hope”, the world’s only hospital hug.
Denise shares her story of being an oncology parent and discusses the power of community, the importance of celebrating and honouring our kids, and how the true path towards healing is found in connection, community and knowing we're never alone.
If you are a bereaved parent, a parent who is tirelessly advocating for cancer research, a parent who needs to find hope and light in a dark place, or simply someone who is looking for inspiration from a human spirit who is proof that love, and connection, and miracles are possible - then you will fall in love with Denise the same way I did.
So, let's dive deep, with Denise.
https://www.meaganbebenekfoundation.org/
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