The Deep C

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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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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