Afleveringen
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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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Zijn er afleveringen die ontbreken?
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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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In today's episode we meet Jeff who's daughter Lily was diagnosed with an astrocytoma when she was four months old. In sharing about Lily's cancer treatment, Jeff turns the focus from his daughter towards his incredible wife Julie and the heroic efforts she took to save Lily, and then in turn, the realization that she needed to save herself.
Jeff shares the intimate and vulnerable details of how his wife supported their daughter for years throughout her treatment, and the toll it takes on a parent, particularly a mother. WIth respect and pride, Jeff details Julie's breakdown and subsequent breakthrough, and shares the ways they have both healed from the battle of a childhood cancer diagnosis.
This episode is for every single parent who is struggling to stay afloat, and it will give you permission to ask for a life preserver when you're drowning. There is nothing more brave, or loving, than knowing when it's time to save yourself.
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In recognition of Brain Cancer Awareness Month, today’s episode features Cole who was diagnosed with medulloblastoma when he was 12yrs old. Today, Cole is a 22 yr old soon to be college graduate who dedicates his time, energy and passion to raising awareness and advocating for childhood cancer research.
Cole shares his memories of his life before cancer, what it felt like to be diagnosed, and how his family and God carried him throughout his treatment. Cole is vulnerable, honest and so generous with his insights into what it’s like from a child’s perspective to be treated for such an aggressive and life changing diagnosis.
Cole’s story is featured in a new book by legendary ESPN sportscaster Dick Vitale called “Until My Last Breath: Fighting Cancer with My Young Heroes.” Dick, battling cancer himself, shares in Until My Last Breath the resilient stories of kids who have battled pediatric cancer, with all the proceeds benefiting the V Foundation’s Dick Vitale Paediatric Cancer Research Fund. Cole has his own chapter where you can read more about the incredible work he’s done, and I know will continue to do.
Until My Last Breath - Dick Vitale (Amazon link)
V Foundation
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Oncology parents instantly connect on so many levels because our experience is so nuanced and unique, but it's especially familiar and comfortable talking to a parent whose child has the exact same diagnosis as yours. Under the absolute worst circumstances, it turns out that it IS possible to find people who can make you feel seen and supported.
In this episode, we share our experience with our kids Embryonal Rhabdomyosarcoma - through diagnosis, treatment and scans, we relate on every single level. It was like talking to an old friend, Ebony was so easy and willing to share.
We go deep into hope, support and Ebony's faith in God to carry her through her son's treatment.
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Today we speak with Jasmine Miller, a Child Life Specialist at the UF Proton Therapy Institute in Jacksonville, Florida. Jasmine gives parents her strategies on working with kids to face the really big scary feelings that come with a cancer diagnosis, and she shares some vulnerable truths of what children confess to her about their treatment when their parents aren’t in the room.
Jasmine has her bachelor's degree in music therapy and has a masters degree in child development. She has been working with children with chronic illness in the hospice world since she was 18 yrs old, and she is the child of a stage 4 lung cancer survivor.
Jasmine talks about the importance of the mental and emotional health of a child during their cancer treatment, and ways she can support the entire family to find joy and connection during a dark and scary time.
https://www.floridaproton.org/
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When I first met Julie, I felt this deep enduring strength inside of her. The kind of an embattled solider who had seen war many, many times. I knew she was the perfect person to talk about the roller coaster of this disease, how totally unpredictable and out of control it can be, and how difficult (I actually think we use the word impossible in our conversation) it is to ride it. How do you get comfortable knowing your world could be thrown upside-down in an instant? How do you do life, how do you function, how do you buy your child shoes for the next season when you’re not even sure they’ll be alive to wear them? And that’s what I loved and appreciated so much about Julie, she didn’t shy away from these questions and instead spoke honestly and candidly about her struggles, her anger, and what it feels like to take knock after knock and just keep going against the fiercest storm.
Julie’s 6 yr old son Carson was diagnosed with Leukaemia when he was two, with a rare genetic mutation called the Philadelphia Chromosome that makes his treatment more complex. He relapsed during maintenance, received a bone marrow transplant with his big brother Reid as his donor, and it worked - for over 2 years Carson was cancer free. This past Christmas, literally on Christmas Day, Julie received the devastating news that Carson had relapsed for a second time, catapulting them back into the world they thought was behind them. So behind them in fact, that Carson barely remembered his first treatment and was now reentering the cancer world as a very alert, aware and reluctant 6 year old who wanted none of this.
Julie and I talk about the armour we wear during our kids' treatment and if it ever feels safe to take it off. If you’re in a relapse or if you feel like everywhere you turn there’s just another blow, another complication, another setback, take a listen because Julie is proof that we can survive in uncertainty, and that we have more to give than we sometimes believe.
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My conversation with Erin was special from the second she opened her mouth. She is the most gentle, warm and beautiful soul, and so willing to share and get vulnerable about what life was like after her daughter Arden passed 4 years ago.
At Arden’s 12 month check up, Erin mentioned to her paediatrician that Arden had a small bump on her chest, and her doctor brushed it off as a lipoma. But Erin knew that Arden hadn't been herself, she was pale, bruising and, as we ALL know, something just didn’t feel right. After many more trips to the doctor, Erin finally brought Arden to the ER with the firm intention of not leaving until she had answers.
After ultrasounds and scans, Erin was brought back into a very sterile ER hospital room, I know you know the room, and with her baby in her lap, the doctors said they found a grapefruit sized tumour in Arden’s abdomen and tests would later indicate she had Neuroblastoma.
I don’t take conversations about our kids lightly. When a parent is opening up and sharing the details of their child’s life, I consider it an honour to be trusted, and I do everything to create a space that feels safe to do that. In my conversation with Erin, we do talk about Arden’s EXTENSIVE treatment that involved surgeries, chemo, a tandem bone marrow transplant, radiation and relapse.
I don’t include these details in the episode you’ll hear today because Erin’s gift to us is how she describes walking through the time after Arden passed, the signs she's received, what’s brought her comfort, what she believes, and the ways she’s tried to process Arden’s loss.
I’ll also add for context that Erin found out she was pregnant towards the end of Arden’s life, and she graciously and openly shares how she mothered Arden as well as the baby growing inside her.
I’m telling you, Erin will enter your heart and never leave.
This episode is for Arden, and Griff 💛
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Kevin’s son Asher was diagnosed at 3 months old with LCH when it was still a very rare cancer diagnosis with minimal research and a trial and error treatment plan. Kevin’s wife Katy became the “medical” parent while he was the parent who kept life running. Kevin speaks candidly about their division of roles and how they kept an open and consistent line of communication with each other throughout Asher’s treatment as a way to stay connected and make sure the other was feeling supported and cared for.
Kevin shares his eternally optimistic attitude about Asher’s diagnosis, and how committed he and his wife Katy were to getting to the other side of treatment. Kevin also opens up about his feelings about their daughter who was 5 years old when Asher was diagnosed. He shares how painful it is to remember how his daughter felt during that time, and how she was the “forgotten sibling”, a pain so many parents with multiple children feel when one child has medical needs. Kevin is so gracious with his open and vulnerable feelings around his regrets, and by sharing his honest account of Asher's treatment, he connects us all because we know these exact feelings.
This conversation is both heartbreaking and also heart affirming, Kevin is an incredible dad to both his kids, and the way he describes the impenetrable bond he and Katy have on the other side of Asher’s treatment is absolutely beautiful.
This episode covers parenting dynamics through a cancer diagnosis, the roles we adopt, how we parent multiple children, and what it feels like to go back to normal too fast after treatment is done.
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My husband and I are VERY different, like we're about as opposite as it gets, but somehow we’ve found a way to intersect where it matters the most to us. We have our outside life where people at parties would think we're strangers, and our inside life where our roots grow so far and widespread you will never find where they end.
When our daughter was diagnosed, our differences for some reason worked in our favour. He became our pillar of strength and I became our pillar of action. While he was holding her hand, I was holding our life. Both equally important.
Our conversation in this episode exposes our differences in a way I think a lot of partnerships will relate. My husband, an internal processor, was head down, steady strokes, with a firm as hell resolve that we would make it to shore. I, on the other hand, the external processor, had to feel and experience everything - the drowning, the gasping, the sinking, and the darkness. Lots of darkness (still some darkness). But also the blinding light that inevitably follows - light like I've never, ever known.
The different ways parents move through their child's diagnosis can be so complex and unique, both as individuals and partners, but the one common unwavering thread is the love we have for our children.
There are no differences among us when it comes to that.
McNabb family blog fromlandtoc.com
Email and reach out at [email protected]
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In today's episode Sam talks with her cancer therapist, social worker Laura Pasqualino about the tools and strategies Laura helped Sam apply during her daughter's treatment. Laura believes we already know the way through the darkness, we've just never had to access the resiliency and inner-guides until now. She gives examples of how she helps parents find their way, and how she teaches us to visit the pain, not live in it.
Laura holds a Master's Degree in Social Work from the University of Toronto and has over 25 years experience in both hospital and community settings. She is a program leader and consultant at Wellspring Cancer Support Foundation, and also runs her own private practice supporting oncology families throughout their child's treatment, and beyond.
Laura is a cherished guide for families carrying their children through treatment and has helped hundreds of parents through the darkest times of their lives. Her ability to sit in the pain with a parent and help to release feelings of shame, guilt, denial and anger is profound. Laura's decades of experience has given her a perspective and insight that brings parents comfort in knowing they aren't alone, and that the deepest most painful places can be safe to explore with someone who knows the terrain.
Therapy isn't for everyone and can oftentimes hold a stigma that we're weak or lack the resources ourselves to navigate our pain. If you're curious about how a therapy session sounds, this episode will give you a fly on the wall advantage of how Laura walks Sam through the terrifying fear of her daughter's diagnosis, and provides Sam with tools and insights to cope and manage in ways that give her hope, strength and lead her out of a dark place and towards the light.
If you'd like to find Laura, you can contact Wellspring and connect with her there.
https://wellspring.ca/
Wellspring Family Support
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Host Sam Taylor chats with Dawn who’s son Ollie was 7 when she noticed a tiny bump on his neck that wasn’t going away. After months of trying to get answers, with multiple doctors suggesting it was cat scratch disease or tuberculosis, they finally got a biopsy that concluded it was ALCL. Treatment began, Ollie relapsed, and with the cancer cells now in his central nervous system they attached themselves to his optic nerves. After waking up from a lumbar puncture, Ollie was groggy and asking to have the lights turned on. Sitting under the bright fluorescent beams of the recovery room, Dawn assumed he was still just coming out of it, but when Ollie persisted, she could tell something was very wrong. After multiple tests, they learned that Ollie’s cancer had caused severe optic nerve atrophy resulting in his permanent loss of sight. Now blind, Ollie continued treatment including a stem cell transplant using his older sister as his donor, during covid.
Dawn shares her journey of navigating Ollie’s cancer diagnosis and treatment and finding hope in the midst of darkness, and the importance of giving back to the community. She highlights the challenges of adjusting optimism in the face of uncertainty and the need to create a roadmap when there is no guidance. She also explores the concept of the gift of cancer and finding light in the darkness. Dawn talks about the difficult decision of having her daughter as a stem cell donor for her son and the difficult parenting conversations they were forced to have. She explains how she turned her experience into advocacy and awareness, particularly in the areas of blood donation and childhood cancer education. Dawn reflects on finding purpose and empowerment through her advocacy work and the goal of improving support and education for families in the oncology and vision loss communities.
https://www.accessforkidscancer.ca/
https://opvic.ca/
https://www.ontario.ca/page/special-education-advisory-committees
https://www.bloodcancers.ca/i-care-someone-blood-cancer/blood-cancers-kids-teens-young-adults/childhood-blood-cancers
https://www.lls.org/dare-to-dream
https://www.cnib.ca/
https://kidskickingcancer.ca/
https://www.blood.ca/en/stories/the-need-goes-on-14-mission-to-save-her-brother
https://olliesbump.blogspot.com/
https://www.pogo.ca/
https://www.instagram.com/cnib_ollies_hope/
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Host Sam Taylor talks to Cara whose daughter was two years old when she was diagnosed with Leukemia. Due to adrenal complications during treatment, Cara's daughter arrested and was placed on life support for 47 days in the ICU. Cara talks about coping through this dark and scary time, what helped to pull her through, and how once her daughter was done treatment, she felt like she'd lost her identity. Sam and Cara talk about therapy, how to best support a friend during treatment, the "bad words" that make them cringe and how they've found ways to live with the ever present knowing that cancer can always come back. Cara is the most proud of her daughters and being their mom, and she attributes her life to them - her greatest legacy.
Cara and Sam have a conversation like two old friends, sitting around a table, having a coffee and just catching up. Except instead of talking about the normal daily life stuff, they dive deep into the topics only other cancer parents can have with each other. The comfort and ease that comes with these vulnerable and honest chats can make oncology parents feel so seen, and so connected. We hope this episode gives you that familiar, relatable feeling of just being around friends who get you and who know where you've been, because I promise we do.
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Host Sam Taylor talks to her best friend musician Sarah Blackwood from Walk Off the Earth on all the ways friends and community can support a family through their child's cancer treatment. Sarah shares the ways they built an army of support, how they delegated tasks, and how they knew to ride the waves of treatment by sitting in the pain and fear of cancer and never trying to make it better. Sarah talks about her coping strategies through grief and trauma after her own personal loss, and how she found ways to stay active and helpful as a way to process her pain. Sarah and Sam give families take away tools to share with their own friend group, and they talk about what it's like to be so deep and dark in the ocean, and have friends who act as life preservers who pull you to the surface.
https://www.walkofftheearth.com/
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In recognition of International Childhood Cancer Day, join host Sam Taylor on The Deep C as she sits down with Sickboy to share how parents and caregivers learn to cope with their child's cancer diagnosis. Sam talks about how disorienting and lonely it is when a child is diagnosed, and how it feels like being tossed into the depths of the ocean. Sam shares how the only way to survive and to carry your child through treatment is to learn how to breathe underwater, to learn how to become a fish.
In this episode, Sam and Sickboy delve into the power of community, sharing personal stories and insights on how these connections can serve as lighthouses in the midst of the storm. Sickboy hosts Jeremie, Taylor and Brian lead Sam to share the deepest truths and emotions of her daughter's cancer, during treatment and into remission.
They discuss the reasons why Sam started The Deep C, and why it's so important for caregivers to have a community and an outlet to save themselves while they give all of their energy and strength towards saving their child.
https://www.sickboypodcast.com/
https://internationalchildhoodcancerday.org/
https://campfirecircle.org/
https://cedoughertyconsulting.org/
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In this episode of The Deep C, host Sam Taylor speaks with Carolyn, mom to four beautiful babies. When Carolyn's second baby Malcolm was 5 months old he was diagnosed with leukemia. In an instant, Carolyn and her partner were airlifted to CHEO (Children's Hospital of Eastern Ontario) and admitted, during covid, while she was pregnant with their third child. For almost 6 months, Carolyn lived at CHEO with Malcolm while he received treatment. The hospital became Carolyn's home, and the nurses and doctors her family.
When Malcolm's treatment was complete and Carolyn and her partner were preparing to return home to North Bay, their team ran tests that determined Malcolm's cancer had returned, and it was terminal. Carolyn bravely and lovingly shares the days leading up to Malcolm's passing, and the hours after. She does this for families like her, who are palliative or bereaved so that they don't feel alone and can find connection in this place of pain and uncertainty. Carolyn gives words to some of the most deep and profound emotions we can feel as parents, and she does it all with a grace and honesty that will expand your entire heart.
This episode covers child loss, bereavement and the death of a small child. When Carolyn begins to share about Malcolm's passing, there is a break where the host lets you know the conversation is shifting to sharing details about his death. Please sit with this information, take a break, and give yourself the space to decide if you'd like to continue listening. While Carolyn's description of Malcolm's passing is full of love, it may also cause triggers for listeners. Please be loving with yourself, and reach out for support. Below are the supports Carolyn used, as well as the supports the host mentions at the end of the episode. This episode is dedicated to Malcolm 💛
https://rogerneilsonhouse.ca/
https://wellspring.ca/online-programs/programs/all-programs/parents-of-children-with-cancer-support-group/
https://cedoughertyconsulting.org/
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In this episode of The Deep C, host Sam Taylor talks to Tamy, the mom of a 6-year-old powerhouse of a little dude being treated for relapsed neuroblastoma. Sam and Tamy talk about the shock of diagnosis, of what it’s like being in treatment for 5 years, and how it’s never an option to stop moving forward. Tamy shares her well earned coping strategies on scanxiety and relapse results, how she’s found community through her fundraising business Little Press Co. and how she’s learned to keep swimming, even in the roughest and darkest waters.
Tamy’s son’s treatment plan isn’t currently following any map or direct course, it’s constantly evolving, changing, and reacting on a daily basis. Despite the uncertainty and uncharted waters ahead, Tamy stays focused on her son and how he’s feeling, appreciating the days he feels good, and cherishing every second of his unstoppable grit and resilience. Tamy is a fighter, but she will be the first to tell you she gets it all from her son 💛
Tamy’s website https://littlepressco.ca/
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