Transcript
Speaker: Welcome to season four of the Guardians of Hope podcast, where we empower the voices of medical, legal, tech, nonprofit, and mental health professionals dedicated to helping children and families. We are here to offer resources and information for anyone who wants to make a child's life better and richer. We need it now more than ever.
Speaker: Welcome everyone. When a child is diagnosed with cancer, most people's minds go immediately to the hospital, the doctors, the treatments, and the scans. But for the families living it the hardest moments often happen somewhere else entirely, at home after the appointments end and the hospital doors close behind them.
Speaker: More than a quarter of parents across all income levels experience significant economic hardship during a child's cancer treatment. And that doesn't begin to account for the caregiver burnout, the household collapse, and the quiet grief of watching normal life disappear.
Speaker: Katie Kintas knows this from the inside. As both a mother and a spouse who has lived through cancer firsthand, she's experienced the gap between what the health care system provides and what families actually need to survive.
Speaker: She's the founder and CEO of Here to Serve, a nonprofit dedicated to providing comprehensive in-home care and support to families with children battling cancer and to young parents fighting the disease while raising children at home. Katie, welcome. Thank you for joining me today. Thank you for having me.
Speaker: Well, why don't we go ahead and start with can't what most people think of cancer. Now they think of it as a hospital experience, but you say 60% of the experience happens at home.
Speaker: So what does that look like for families? Well, most people see cancer through the lens of treatment. The hospital stays, chemotherapy, radiation, surgeries, and doctor's appointments. But treatment is only part of the journey.
Speaker: Approximately 60% of the cancer journey happens at home, and that is often where families struggle the most. At home, cancer doesn't replace everyday life.
Speaker: It just gets added to it. Parents are still trying to work, maintain health insurance, pay the mortgage, care for their children, prepare meals, do laundry. get everyone where they need to go, and keep a household functioning.
Speaker: Now add medications, treatment schedules, unexpected hospitalizations, transportation to appointments, medical bills, insurance issues, and caring for a seriously ill child or young spouse. And cancer doesn't end when the family walks out of the hospital doors. The fear, exhaustion,
Speaker: financial pressure and caregiving responsibilities come home with them. And cancer doesn't, um and friends and relatives often say, how can I help?
Speaker: What can I do? But when you're overwhelmed and frightened, figuring out what you need and then asking for it, organizing it, and coordinating everyone who wants to help becomes another job.
Speaker: That's the gap here to serve was created to fill. We don't just tell families where they can find help. We help organize and so support around and organize the support around them. We coordinate meals,
Speaker: transportation, childcare, household needs, fundraising, resources, communication, and the community of people who want to help. Our goal is simple.
Speaker: The family should only have to receive the help, not find it, organize it, and manage it. Hospitals are extraordinarily important because they treat cancer, but when families go home, they need someone helping them navigate everything cancer does to the rest of their lives. That's the part of the cancer journey we cannot afford to overlook.
Speaker: 100%, Katie, your organization is amazing. i mean, you you would take all of that burden off of the shoulders of your clients. So you talked about bills and a lot of the things that you do to help.
Speaker: I want to dive in a little bit more. Everyone expects medical bills bills, but what are the financial pressures that actually catch families completely off guard?
Speaker: What catches families off guard is that the financial impact of cancer exceeds far beyond medical bills. Even families with good insurance can find themselves in financial crisis because the real cost is often the disruption cancer creates in everyday life.
Speaker: One of the biggest pressures is lost income. A parent may reduce their hours at work, take unpaid leave, turn down opportunities, or leave work altogether because someone has to be at appointments, hospital stays, at home caring for their very sick child or young spouse. At the same time that income is shrinking, household expenses are increasing.
Speaker: Suddenly, families are paying for gas and parking and constant hospital trips. Meals away from home, child care for siblings, housekeeping, pet care, prescriptions, medical supplies, and other expenses they never budgeted for.
Speaker: If treatment requires traveling, there's also hotels, airfare, rental cars, and weeks or months spent away from home. And the bills they had before cancer don't stop.
Speaker: The mortgage or rent is still due. Utilities, car payments, insurance, groceries, and credit cards still have to be paid. What people don't realize is how difficult it is to manage all of this while caring for a critically ill child or young spouse. Parents are exhausted and frightened. They don't have hours to search for financial resources, complete resources.
Speaker: Applications, organize fundraisers, research resources, or coordinate everyone who says, just tell me, how can I help? That is why the financial burden of cancer isn't simply about paying for treatment.
Speaker: It's about trying to keep the entire household financially functioning while the family's time, energy, and income have been turned upside down. And that's where here to serve becomes so important. We help families coordinate the practical and financial support around them so parents can spend less time trying to hold their lives together and more time where they need to be with their sick child or young spouse.
Speaker: Sadly, you have lived through cancer both as a mother and a spouse. What did that teach you that no healthcare system ever could? Well, first and foremost, it taught me that treating cancer and living through cancer are two different things.
Speaker: The health care system knew how to treat my husband and son's cancer. What it couldn't teach me was how to hold the family together and keep my job while cancer was tearing our normal life apart.
Speaker: When my husband and then 16-year-old son were battling cancer at the same time, I wasn't just a wife and a mother. i became a caregiver, an advocate, a scheduler, researcher, chauffeur, insurance navigator, employee.
Speaker: and the person trying to keep our household functioning while holding down a full-time job. I had to figure out how to keep working so we could maintain our health insurance, manage two treatment schedules at different hospitals, pay the bills, care for my family, and somehow manage my own fear and exhaustion.
Speaker: And that is what I learned that no healthcare care system could have taught me. Cancer doesn't just happen to the patient. It happens to the entire family. Hospitals are designed to treat the disease. But when you walk out the hospital doors, someone still has to figure out dinner.
Speaker: Someone still has to take care of the other children, get everyone where they need to go, communicate with family and friends, deal with insurance, keep the house running, manage finances, and somehow continue earning an income.
Speaker: People would say, let me know what I can do. They genuinely wanted to help. But I was so overwhelmed that figuring out what we needed, who could do it, and when we needed it became another job. The experience fundamentally changed the way see cancer care. Families shouldn't have to become experts in coordinating their own support while they're fighting for someone they love to live.
Speaker: That is why I founded Here to Serve. I wanted to create what I desperately needed during my own family's cancer journey. Someone who could step in see the whole family, organize, help mobilize the people who wanted to help and say, you take care of the person you love. We'll take care of everything else.
Speaker: okay You just touched upon it. Caregivers almost always put themselves last. And what does that cost them? And what do they need to hear from your experience? Caregivers often believe putting themselves last is simply what is required.
Speaker: But over a cancer journey, that can last years. The sacrifice comes at a tremendous cost. They stop sleeping well. they keep They skip doctor's appointments for themselves.
Speaker: They stop exercising, seeing friends, eating properly, and doing the things that once helped them manage their own stress. Their entire identity can become caregiver, advocate, scheduler, parent, spouse, and crisis manager, all while living with the constant fear of what might happen next.
Speaker: Eventually, something gives. It may be their physical health, emotional health, marriage, job finances, or several of those things at once.
Speaker: What caregivers need to hear is this. Taking care of yourself is not something away from the person you love.
Speaker: it's taking It's part of taking care of them. And we have to stop placing the entire responsibility for self-care on an already overwhelmed caregiver.
Speaker: You cannot tell someone to get more sleep when they're up all night managing medications or to take a break when there's no one available to relieve them.
Speaker: That is why families need practical, coordinated support around them. Meals delivered, rides arranged, children cared for, household needs handled, financial resources found.
Speaker: And friends and family organized so the caregiver doesn't have to manage the help too. Sometimes the most meaningful things we can say to a caregiver isn't make sure you take care of yourself.
Speaker: It's you don't have to do it all yourself. Let us carry some of this for you.
Speaker: Now switching gears a little bit, why do most families not realize how much help they need until they're already in crisis? Well, most families don't realize how much they need because a diagnosis, they're focused on one thing, keeping their loved one alive. yeah Everything else becomes secondary.
Speaker: Cancer doesn't arrive with a roadmap. explaining what the next six months, two years or five years will demand from a family. In the beginning, there's an adrenaline adrenaline rush that takes over. Parents tell themselves, oh, we can handle this. We'll figure it out. Friends and family say, let me know if you need anything. But the cancer family doesn't even know what they're going to need yet.
Speaker: Then the cumulative weight begins. There are appointments, hospital stays, medications, meals, childcare, transportation, laundry, housekeeping, bills, insurance issues, missed work, reduced income, and the emotional needs of siblings and spouses.
Speaker: Meanwhile, the caregiver is trying to communicate with dozens of concerned people and coordinate everyone who wants to help. It isn't one overwhelming thing. It's a hundred small things that never stop.
Speaker: By the time the family recognized they cannot manage it all themselves, they are often physically exhausted, emotionally depleted, financially strained, and their support network may have begun to fade because the crisis has lasted far longer than anyone anticipated. That's why I believe we have to reach families before they reach the breaking point at diagnosis.
Speaker: Mm-hmm. We shouldn't wait for caregivers to collapse before we surround the family with support. The goal is to create a structure around them early so they don't have to find help, ask for help, organize help, and manage the people who are providing it.
Speaker: Their job should be caring for their loved one. Our job should be helping carry everything else. Yeah. Now, Katie, for the parent who just heard your child has cancer, completely frozen, what is the first thing that you want them to know?
Speaker: That's easy. The very first thing I want them to know is you don't have to figure out everything today and you should not try and do this alone.
Speaker: When you hear the words, your child or spouse has cancer, everything else disappears. You're terrified. You're trying to understand what the doctors are saying while your mind is racing, racing ahead.
Speaker: Is my child or spouse going to survive? How am I going to keep working? Who will take care of my other children? How will we pay the bills? What will happen to our life?
Speaker: In those first days, your only job should be to be your child's parent or your spouse's support, to listen, to ask questions, to love them, to get through what is directly in front of you.
Speaker: But very quickly, cancer becomes much bigger than treatment. Life at home doesn't stop because your child or spouse is sick. There are still meals to make, bills to pay, children to care for, job to protect, pets to manage, laundry to do, and people who want to help but don't know how.
Speaker: That is why i want families to understand that accepting help early is not a sign that you can't handle this. It's one of the smartest things you can do to protect your entire family. Don't wait until you're exhausted, financially overwhelmed, your marriage is strained and your other children are struggling, or your own health begins to suffer before reaching for support.
Speaker: There will be so many people say, let me know how I can help. In that moment, you may not know what you need, and you certainly shouldn't have to organize everyone who wants to help.
Speaker: Build your support system early. Let other people carry the things that they can carry so you can carry the one thing no one else can, being there for your child or young spouse.
Speaker: who Katie, thank you for that. Now, I'm curious about what your biggest challenge is now as a nonprofit moving forward. I know you have an event coming up, your annual fundraiser.
Speaker: um I'm curious, can you share some more information about your fundraiser, how people can find you? And again, what are some of the challenges that you're facing right now? By far, our biggest challenge is fundraising and fighting to be found. One of Here2Serve's greatest challenges is improving that families need our help. That's obvious.
Speaker: It's making sure they can find us when they need us most and having the finances to help us serve these families. Cancer research organizations and major hospitals have multimillion dollar marketing budgets that dominate online searches and public awareness. Here to Serve does not have a multimillion dollar marketing budget. So even though we are the only national nonprofit dedicated to providing comprehensive, coordinated support to families battling cancer at home, families searching online for exactly that kind of help may not find us until several pages into the search.
Speaker: That matters because more than 60% of the cancer journey happens at home where families are struggling and juggling meals, transportation, childcare, household responsibility, finances, work, communication with loved ones, and the overwhelming demands of caregiving. We are working hard to change that and you can help.
Speaker: Join us on Saturday, October 3rd at 5 p.m. at the Arcadia Community Center for our annual Take a Bite Out of Cancer fundraiser. It will be an unforgettable evening featuring live music, massage chairs, wine raffle, live and silent auction, nine different cuisines served throughout the evening,
Speaker: Early bird tickets are just $80 through September 15th and include all you can eat food from our various food stations, plus a glass of wine, beer, or another non-alcoholic beverage.
Speaker: Come have a wonderful evening and help us make sure that when a family searches for help at home, Here to Serve is there to answer the call. Visit us at heretoserve.org. That's H-E-R-E-T-O-S-E-R-V-E.org to learn more and purchase your tickets.
Speaker: Thank you so much for hearing me out about. cancer and how hard it is at home. Katie, thank you. um Where are you located? Where is the event located? What city and state so everyone knows?
Speaker: Okay. It's located in Arcadia, California, and that is close to Pasadena, California. For all you people that may not be aware where Arcadia is, we hope you'll join us. You'll have a wonderful evening while you're supporting um these tremendous families.
Speaker: By the way, we have 30 families on a wait list. We would love to get them off the wait list and your attendance at this fundraiser can help us do that.
Speaker: Yeah. thank Thank you, Katie. Thank you for the work that you do. And thanks for sharing your mission and your cause with us. Thank you, Cynthia, for having me. Really appreciate you helping us get the word out.
