Navigating Childhood Cancer Podcast

In this episode, I share my conversation with Ambika. Ambika is the mother of Arya, who was 5 in 2024 when he was diagnosed with T-cell Acute Lymphoblastic Leukemia. Ambika and her husband Abhinav reached out to me because they hoped to share their family’s story and wanted the opportunity to talk about all the ways their child’s cancer impacted their family. Ambika discusses the unique way her family rallied to support her and her husband while they shared the caregiving responsibilities for their two young children. She also shares some of the challenges they faced along the way, such as the isolation that comes with parental identity loss, how to relate to friends and colleagues when your world is upside-down, and how to handle nutritional challenges when your child simply cannot tolerate most of the foods he used to love. In Ambika's words, "We hope our story can offer comfort and connection to other families and caregivers who may be walking a similar path."If you would like to share your story, please reach out at [email protected]. I know you'll enjoy this episode. 

In this episode, I share my conversation with Zack Sandor-Kerr. Zach is the father of 3 boys, including 10 year old Jasper, who was diagnosed with leukemia in June of 2023. Zack tells us about his experience as a Dad, who has been the primary caregiver for his child throughout his treatment, and what that has been like for him, and his wife Kaitlin. He rightfully raises the issue of inclusive care in both the hospital environment, and in our communities. His perspective is both considerate of others, and an important reminder to all of us to check our assumptions, and consider our words. As a super creative person, Zack also had an interesting way to prepare family and friends for visits to the Sandor-Kerr home during the early days of his son's treatment. If you would like to see a copy of the Tip Sheets that Zack describes in this episode, please email me at [email protected]. You can learn more about Zack's art on Instagram, or at storypanda.ca.

In this episode, I’m sharing my conversation with Alexx Friesen. Alexx is a Child Life Specialist who works in Toronto. She has worked with families in hospital settings, as well as in hospice and palliative care. She also has experience in oncology, both as a professional, as well as a patient. She herself is a childhood cancer survivor. Her experience as a patient when she was a child led her to this career and it gives her such a unique perspective and skill set to work with families in these extremely difficult scenarios. She is a kind and happy person who is so creative and insightful into the experiences of children. She is also so well-equipped to be doing this very important work.You can find Alexx online at @childlifealexx. 

In this episode, I share my conversation with Michelle Da Costa. Michelle is the mother of three girls. Her youngest daughter is a childhood cancer survivor. Michelle is also a Parent Liaison with @OPACC  Ontario Parents Advocating for Children with Cancer. I had the fortune of meeting Michelle at a parent drop-in while my own child was in treatment, and our conversation had a deep impact on me. Michelle tells the story of her daughter's experience with cancer, and how it inspired her to become a support and a resource to other oncology parents. It is remarkable how Michelle has turned her own struggle into purpose, and how she shows up week after week, in service of all the families who are now walking the path she travelled so many years ago.  

In today's episode, I am speaking with two representatives from Make-A-Wish® Canada. You are very likely familiar with Make-A-Wish Canada. This is the charitable organization that grants wishes to children with critical illnesses. But you may not be aware of some of the interesting facts about Make-A-Wish Canada that I learned from this conversation: In 2023, Make-A-Wish Canada brought wishes to 1,389 wish kids and their families across Canada. A wish might be a chance to travel, to meet a celebrity, to have an experience, or to have an item or piece of equipment. And some kids are hoping to realize other dreams like recording a song or writing a book. The wish coordinators are so thoughtful and creative at helping kids to uncover their wishes and bringing them to life. Nearly 50% of children in Canada waiting for a wish have been diagnosed with Cancer. Wishes are considered to be an essential part of treatment and can even improve outcomes.In the words of Make-A-Wish Canada, “Wishes are transformative, replacing fear with confidence, sadness with joy, and anxiety with hope. Make A Wish believes that through these experiences, children can discover that anything is possible.”If you are interested in getting involved with Make-A-Wish Canada, either to donate, to fundraise or to volunteer, you can find them online at makeawish.ca.

In this episode, I have the honour of sharing my conversation with Jessica Hill. I first learned of Jessica, and her daughter Addy, in September of 2023, when Sick Kids Hospital posted a story about a new initiative called Precision Child Health. The post featured an enormous crystal ball that was filled with colourful mist. At the unveiling, beside the crystal ball, stood a family who spoke about the young teen who inspired the campaign. That teen was Addison Hill, or Addy, as she is affectionately called. I watched Jessica’s speech, and I was in awe at how a grieving mother could demonstrate such strength and hope, I needed to know more, so I followed along. I went on to learn about Addy’s experience with childhood cancer, and the work that her family has done since Addy's death to raise awareness for angiosarcoma, and to fulfill Addy’s wish to raise funds for cancer research, specifically for the work of Addy’s oncologist and his team, in order to do more for all the other kids out there with this disease. Jessica herself is a force. She is tireless, committed, so well-spoken, and approaching this situation with so much grace and compassion. I feel so fortunate to have met her,  and it is my great honour to share her story with you here.You can learn more, and watch the documentary about Addy at https://www.teamaddy.ca/addys-storyhttps://www.instagram.com/teamaddy8/

In this episode, we hear the story of actor and comedian Daniel Stolfi. Daniel was diagnosed with Lymphoma when he was 25 years old. Like every cancer warrior, Daniel’s story is remarkable. He kept a journal throughout his treatment, and before his treatment was even over, he wrote and performed an award-winning one-man comedy show called Cancer Can’t Dance Like This. It was met with rave reviews! He has performed this show at venues across North America, and in the process, he has raised more than $100,000 for cancer research.Daniel has also written a book, his memoir, called The Comedian vs. Cancer. His perspective is so fun, so unexpected and so refreshing. There is just something about being able to laugh along with Daniel to make us all feel a little better about this brutal and unbelievable situation. You can find Daniel online at youandmeent.com and on Instagram at @stolficomedy.   

In this episode, I am thrilled to share my conversation with Jenny Edmonds, Director of In-Hospital & Community Programs with Campfire Circle. Campfire Circle is a privately funded charity in Ontario that brings laughter and joy to kids and families affected by childhood cancer. Campfire Circle is passionate about helping kids to just be kids. These are the cheerful folks who visit your hospital room to play a song on the ukulele, to play a boardgame with your child. They coordinate in-hospital activities, such as painting or crafts, and they have year-round programming outside the hospital, including an overnight summer camp for kids in treatment. Jenny tells us about the history and philosophy of the organization, and all about the incredible programs that are available. If you are interested in donating, volunteering or learning more about their programs, you can visit campfirecircle.org.

In this episode, we hear the story of Nicole Raso. Nicole is the mother of 5 year old Luca, who recently completed his treatment for a Wilms tumour, which was found on his kidney in August 2022. Nicole tells us about how she discovered that her son was sick, and the arduous journey that she and her family travelled in order to bring him back to health. Nicole also explains why she started her Instagram page @donate4kids. Her mission is to spread awareness about childhood cancer, to share helpful resources for families, and to raise funds for cancer research. Nicole is determined to ensure that childhood cancer patients and their families get the attention they deserve. 

When we undergo a major crisis in our lives, we sometimes experience an epiphany about what actually matters. In some cases, we are changed for the better. Heather feels that she has had the opportunity to learn some very important lessons during her brush with childhood cancer, and shares them in this episode. Note from Heather - I accidentally skipped #5! I want to fix it, but I just don’t have time. Also, I’m happy with the flow of the episode, so I’m leaving it as is. In the spirit of this topic, here is lesson #5. Life moves fast and we are doing our best. If my best is not perfect, it is still damn good. So I’m accepting my mistake and moving ahead. I hope you love the episode! 

In this episode, Heather shares her family’s experience arriving at the end of treatment, 2.5 years after her child received a diagnosis of Leukemia B-ALL. She details the various steps that brought her family to that final moment, how they celebrated the occasion, and how they are looking ahead to life after cancer. 

In this episode, we hear the story of Sarah DeMelo. Sarah is the mother of a young family that includes 4 year old Benjamin, who has spent the last year and a half in treatment for Leukemia. Sarah shares the story of Benjamin’s illness, and his path to recovery. She also shares an important reminder of how important it is to advocate for our children, and for ourselves. Sarah herself is a warrior, and she tells the remarkable story about her own battle with a rare form of cancer. Sarah’s perspective is beautiful, and her story is one that you won’t soon forget. You can learn more about Sarah on Instagram at @sarahdkxo

In this episode, I am pleased to bring you my conversation with Susan Kuczynski – Lead Parent Liaison with Ontario Parents Advocating for Children with Cancer, also known as OPACC.  OPACC is a registered charity whose mission is to be the parent voice for families with children diagnosed with cancer across Ontario, Canada. OPACC helps families through free programs and support services including in-hospital and virtual peer support, financial support, and community support.Susan is a parent who has been there. Her daughter has been a childhood cancer survivor for 28 years, and Susan’s experience as a parent to a childhood cancer patient led her to her leadership role with OPACC.  Susan is a kind soul with a reassuring voice, but she is also fierce advocate for parents everywhere. In this episode, Susan tells her story, and explains what OPACC is about, and what services are available to parents, and their families. You can learn more about OPACC, and their many resources at https://www.opacc.org.

In this episode, Heather ponders whether it is harder to have a young child, or an older child in treatment. Each scenario comes with its own unique set of challenges, and both are hard. She also shares a long list of fun things to do to pass the time with your child (no matter what age or stage of treatment) while staying in the hospital… plus one activity that can only be done at home.   

At this time of year, many of us are getting back into the routine of being back at school. However, not everyone gets to return to the classroom, particularly those kids who are undergoing treatment for cancer. Heather talks about some of the things that parents need to consider when preparing for the start of the school year. Also, September is Childhood Cancer Awareness month. Heather talks about what it is like to hear all of the messaging around this occasion. She'd like to know how you are feeling about all of those statistics that are circulating. 

In this episode, we hear the story of Zach Round, a brain tumour survivor and childhood cancer advocate. Zach was diagnosed with a brain tumour when he was 17 years old. He shares the details about the different complications he encountered during treatment, how he made it through the experience, as well as what helped him go on to play college football, and to return to extreme mountain biking. Zach also explains how he became involved in different charities to raise funds and awareness for brain tumour research, and childhood cancer. You can read more about Zach at https://tumorwarrior67.com. 

In this episode, I share an update on some of the ‘lasts’ that we are experiencing as we approach the end of my child’s treatment. I have a sweet song recommendation from Susanne, my guest in episode 7, and a funny story about something that happened in the waiting room at the hospital last week. For a podcast that is about such a heavy topic, this is a nice, light episode. 

In this episode, we hear the story of Susanne and her family.  Susanne is the mother of a young boy named Frankie. Frankie was diagnosed with Leukemia in 2012 when he was just 2 years old. At that time, the treatment protocol for pediatric Leukemia was 4 years, so Susanne and her husband spent 4 years supporting their son while he received treatment. Happily, Frankie is now a healthy 13 year old boy. I am thrilled that they agreed to share their story on our podcast.

Fevers are a very real part of life for a child with Leukemia. When a child who is undergoing treatment gets a fever, it is actually a medical emergency. That child may not be able to fight the infection that is causing the fever. If it is not treated immediately, it can become serious or even life-threatening. In this episode, we talk about what it was like to discover a child’s fever, and how we responded. I also share my tips for how to ensure that you are ready if/when the first fever happens. 

In this episode, we discuss how we handled some of the hard parts of treatment - how to feed a child in treatment, and how to handle all of those medications. Every family will have a different experience, but we expect that these are two things that most families will struggle with at some point. As always, the care team at the hospital was ready with suggestions and support, but sometimes it also requires a little creativity (and a lot of patience) to find the best way forward. 

Music can be a very powerful tool to help us through a tough time. It can lift us up, inspire us, help us to express frustration or help to soothe a broken heart. There are some songs that we listened to over the course of our journey that will forever be associated with that time. In this episode, I tell you all about those songs. While I cannot include the actual songs in the podcast, I have created a playlist on Spotify so that you can hear them in full, if you wish. In future episodes, when I speak with other families, I will ask about the songs that helped them through their journeys, and will add their songs to this playlist. I also explain the process of creating the NCC logo, including the design elements and the colours, and what they all signify. 

As you would expect, there is a lot of darkness that follows a child’s cancer diagnosis. In this episode, we acknowledge the feelings of darkness that one may encounter while on this journey... Not to bring anyone down; Simply to call attention to the reality of this experience, and to help others to see that they are not alone in their sadness or their fear. Surprisingly, there are also moments of light. There is a realization that, without this experience, there are things that we would not have learned, or people we would not have met. So, the light deserves some attention, too, because it is helpful to remember that even in despair, life can be beautiful.

When a family receives news that is overwhelming, in this case, a child’s serious illness, it is usually followed by a period of need. It is understood that the journey ahead is going to be difficult, but they aren’t always in a frame of mind to ask for help, or to even know yet what they'll need. This episode covers all the things that helped us during our period of need. Not all of them are what you’d expect! You’ll hear about many thoughtful, meaningful and very creative ideas for how to help support a loved one during a difficult time. 

Welcome to the first episode of the NCC Podcast. In this episode, you’ll learn about the inspiration behind the podcast, and why it was created. This podcast is for parents, family, caregivers and friends. Our hope is that anyone who is sitting with a new diagnosis, or struggling through any stage of treatment, doesn’t feel quite so alone. Our goal is to educate, to support and to inspire anyone who is experiencing a paediatric cancer diagnosis.

Next week, the first episode of the Navigating Childhood Cancer Podcast will be released. In this trailer, you will hear what the podcast is all about, and what to expect in future episodes. We hope you'll join us!