Latest / Daily Influence / 629. Turning Loss Into Leadership: Camilla’s Mission to Change the Pediatric Cancer Journey

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629. Turning Loss Into Leadership: Camilla’s Mission to Change the Pediatric Cancer Journey · Daily Influence

0:10
[SPEAKER_00]: Welcome to the daily influence where our mission is to deliver a daily dose of positive influence that can uplift you personally or be shared within your sphere of influence.
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[SPEAKER_00]: While not every episode may directly apply to your unique circumstances, we strive to provide insights and inspiration relevant to most people's daily, weekly, and monthly lives.
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[SPEAKER_00]: Whether you are tuning in during the morning, noon or night, the daily influence is here for you.
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[SPEAKER_00]: Listen, share, and embrace the power of influence in your life.
0:40
[SPEAKER_01]: Welcome to Daily Influence.
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[SPEAKER_01]: I'm your host, Greg Lino.
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[SPEAKER_01]: And today's guest is a shiny example of turning heartbreak into hope.
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[SPEAKER_01]: I'm joined by Kamila, the incredible co-founder of MyLosBelieve, a 501 C3 non-profit inspired by her daughter, MyLa, who was diagnosed with Willms, Tumer at age six and sadly passed away at age eight.
1:04
[SPEAKER_01]: Camila and her husband transformed their loss into purpose, creating my list believe, to provide financial assistance to families affected by pediatric cancer.
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[SPEAKER_01]: In just three years, they've raised an astonishing $2 million, partnering with 13 Florida hospitals and worked with local hospices to make spaces more welcoming for children.
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[SPEAKER_01]: Camila is also the author of Who Are You Cancer, a beautifully written and educational book from Myless Perspective, helping children and their caregivers navigate the cancer journey with courage, honesty, and even humor.
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[SPEAKER_01]: Her story reminds us that influence is not about power.
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[SPEAKER_01]: It's about purpose.
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[SPEAKER_01]: Camila, welcome to daily influence.
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[SPEAKER_02]: Thank you kindly for having me appreciated.
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[SPEAKER_01]: I'm so excited to have each day.
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[SPEAKER_01]: Can you share it about your background and what led you to where you are today with my list, believe?
2:00
[SPEAKER_02]: Yes, absolutely.
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[SPEAKER_02]: Thank you for asking that.
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[SPEAKER_02]: And a woman of my age might be difficult to compile it into a short sentence.
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[SPEAKER_02]: But I will do my best.
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[SPEAKER_02]: And I promise you that there is going to be a thread that just magically kind of lands me of where I am today.
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[SPEAKER_02]: So I'm actually first generation sweet raised by Polish immigrants.
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[SPEAKER_02]: And I immigrated to the United States at the tender age of 19 in 1998, and, you know, not having a college degree at the time, the very easy business to turn to because if you're fairly outgoing, you're a little bit cute, your hospitality is where you go.
2:43
[SPEAKER_02]: So I went and hospitality kind of pushed me into moving to, I moved from New York City to Las Vegas where I met my husband and we met through hospitality and then in 2003 or so when we started to have in children, I also did a natural pivot into the real estate world.
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[SPEAKER_02]: And then when my like I diagnosed in 2017 fast forward, we have now been from Las Vegas.
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[SPEAKER_02]: We took our children to the Bahamas and then we ended up in Florida.
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[SPEAKER_02]: So we're now currently in Florida.
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[SPEAKER_02]: And in 2017, when she was diagnosed,
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[SPEAKER_02]: We went from, you know, have it in all together to absolutely the world came crashing down.
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[SPEAKER_02]: And I believe what happens then is that your fight of flight kind of gets ignited and you either take the past.
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[SPEAKER_02]: This is just my interpretation of what happened.
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[SPEAKER_02]: You either take the past of
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[SPEAKER_02]: listening and believing in everything that doctors are telling you, which I'm not suggesting you shouldn't.
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[SPEAKER_02]: But I kind of took the road of I wanted to be partners with my with my doctors.
4:05
[SPEAKER_02]: So I was I sat in on every single tumor board.
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[SPEAKER_02]: They have every single meeting, every round, every medication that they distributed.
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[SPEAKER_02]: I wanted to be part of that.
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[SPEAKER_02]: And I ended up being a team member for them.
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[SPEAKER_02]: And I became my last advocate.
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[SPEAKER_02]: So when we exhausted our standard of care options in the US, we actually took her to Austria, where they did some experimental treatments on her, and it was a immunotherapy.
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[SPEAKER_02]: And I, there I learned a difference between what they do in the US versus what they do in Europe and it had to do with not boxing people into, you know, nowadays, if you could diagnose what a certain cancer would certain stage you give box, right?
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[SPEAKER_02]: So all the treatment regimes are from that box.
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[SPEAKER_02]: And I realized in Europe they actually test it, it's called in vitro.
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[SPEAKER_02]: So they tested two more slides before they actually do before they tested on the body.
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[SPEAKER_02]: And we realized in Europe that out of that, she received six, six different chemotherapy drugs.
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[SPEAKER_02]: And she was in Europe, we learned that she was resistant to three out of the six chemotherapy.
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[SPEAKER_02]: If you can imagine that.
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[SPEAKER_02]: So when she passed away, rather than jumping into my black hole, which is very easy to do, when it comes to grief, I decided that I was going to go lobby for a change.
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[SPEAKER_02]: But now from a mother's perspective, from a medical professional.
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[SPEAKER_02]: So I enrolled into nursing school.
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[SPEAKER_02]: I become the president of the nursing association.
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[SPEAKER_02]: And then a year and a half into it, I was like,
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[SPEAKER_02]: What the heck am I doing?
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[SPEAKER_02]: This is not the path seemingly I was doing well, but this is not the path.
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[SPEAKER_02]: So I pivoted into psychology.
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[SPEAKER_02]: I got an undergrad in psychology, and then eventually I got a master's degree in leadership, and how it all ties back into my list, believe.
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[SPEAKER_02]: I wanted to find a way to preserve her legacy, to share what I know as far as advocacy and love and I chose that route.
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[SPEAKER_02]: So now we have many, well, we have,
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[SPEAKER_02]: for employees.
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[SPEAKER_02]: We have many volunteers.
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[SPEAKER_02]: So my leadership skills are very, you know, well, use there.
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[SPEAKER_02]: And then we have now helped more than 300 families.
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[SPEAKER_02]: And I have, I pride myself, I'm speaking to every almost every single one.
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[SPEAKER_02]: So my psychology degree kind of went into a good use there.
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[SPEAKER_01]: That's such a powerful story.
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[SPEAKER_01]: And it's clear that my luck continues to touch lives
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[SPEAKER_02]: She does, she does, thank you.
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[SPEAKER_01]: What was a turning point when you realized that your family's personal experience could become a source of positive influence and hope for others?
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[SPEAKER_02]: So I love that question because we have partnership with many different 501C3s, and we do referrals between each other.
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[SPEAKER_02]: And for the most part, when it comes to especially a niche market like cancer, and generally it is,
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[SPEAKER_02]: built from an experience, right?
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[SPEAKER_02]: So our experience started a little bit before my lap passed away.
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[SPEAKER_02]: So Mike and I, my husband, Mike, we were in the process of building a venue.
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[SPEAKER_02]: So the venue is a brewery restaurant and a live music scene.
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[SPEAKER_02]: And then when my love passed away and this happened about a year and a half before she passed away and then COVID hit, if you remember, January, so she passed away January 2020 in March, we now were on full lockdown.
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[SPEAKER_02]: So our restaurant now had, and then the governor gave us a little bit of guidelines that we were able to open the window pass through.
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[SPEAKER_02]: There's take away those kind of, and there's a gentleman.
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[SPEAKER_02]: that would come every single day because he was going crazy in his house.
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[SPEAKER_02]: So he would come every single day sit on the patio and then we got friendly with him.
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[SPEAKER_02]: He has two daughters, young daughters.
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[SPEAKER_02]: And then he learned about our story and he goes, give me a lie, I want to help.
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[SPEAKER_02]: What can I do?
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[SPEAKER_02]: He made a ton of money during COVID and he decided that he, he says, just go out and find families that we can help.
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[SPEAKER_02]: So I was members of all kinds of Facebook groups and I went in and I said,
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[SPEAKER_02]: Is there anybody that needs financial assistance and through from COVID until we actually started our five Bible one C3 in late December of 2021 we gave out $250,000 of his money and you know all he wanted was a thank you note so that was kind of the catalyst of a starting our 501 C3 and just taking it to where it is today.
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[SPEAKER_01]: It's beautiful how purpose can grow out of pain.
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[SPEAKER_01]: What you build is more than a non-profits.
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[SPEAKER_01]: It's really a movement of compassion.
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[SPEAKER_02]: Yeah, you're right.
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[SPEAKER_02]: You're right.
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[SPEAKER_01]: And you've raised over $2 million.
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[SPEAKER_01]: And built partnerships with hospitals, hospices, all across Florida.
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[SPEAKER_01]: You know, what guiding values or principles have helped you lead this mission with such authenticity and heart?
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[SPEAKER_02]: So that's a really good question because I have a I believe that when a story comes from a real life experience, you cannot fake it.
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[SPEAKER_02]: So authenticity is almost built in if that even makes sense to use in that sentence.
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[SPEAKER_02]: You know, we do a lot of presentations and sometimes I have to
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[SPEAKER_02]: alter my presentation based on my audience.
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[SPEAKER_02]: So when we do presentation to highly influenced, at highly-assluence, excuse me, donors, potential donors, it's hard to say, okay, imagine your child having cancer because they can't.
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[SPEAKER_02]: Nobody allows themselves to imagine that, right?
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[SPEAKER_02]: So the storytelling that I gave at that point is like, okay,
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[SPEAKER_02]: Imagine being a single mom.
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[SPEAKER_02]: Imagine choosing between sitting in the hospital for treatments with your child for weeks on then or getting fired.
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[SPEAKER_02]: How do you put food on the table if you don't have a job?
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[SPEAKER_02]: How do you provide shelter for your child if you don't have a job?
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[SPEAKER_02]: So the authenticity comes from really our stories that we hear every single day.
10:49
[SPEAKER_02]: And then as far as guidelines, you know,
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[SPEAKER_02]: that we have to, for instance, we are a pediatric only, so you cannot be, you know, an adult and come out sick assistance from sadly because I would love to help everybody, like the other day, we just had a, so we have, for instance, one of our guidelines is that you have to, the initial diagnosis have to be prior to 18.
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[SPEAKER_02]: with a reoccurrence before 21 while we had a 23 year old the other day and it was heartbreaking that we couldn't help but we also can't veer off of that because our donors believe in what we do, right?
11:27
[SPEAKER_01]: So we have strict, strict guidelines that we have there by those values really come through and everything Mila has believed stands for and they really reflect much of what
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[SPEAKER_02]: Yeah, and that's the truth.
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[SPEAKER_01]: Can you tell us about a moment or experience where you truly thought you made a positive impact on someone's life through my list belief?
11:52
[SPEAKER_02]: Well, I wish that you and I had 30 minutes to talk to each other because I have many stories.
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[SPEAKER_02]: Um, I, that my executive director and I, we always say that we cry at least once a day because the stories keep on coming and we have testimonials and we have letters that people are writing to us.
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[SPEAKER_02]: But the first, the first story that comes to mind is because we have a lot of single family or a single parent, excuse me, as far as applicants.
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[SPEAKER_02]: And there's one family that we had
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[SPEAKER_02]: He had, and I say past 10s because he has past since.
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[SPEAKER_02]: Um, he had DIPG, which is a very, it's basically an untreatable, uh, brain tumor.
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[SPEAKER_02]: So we knew that even going in, he was an active treatment, even going in.
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[SPEAKER_02]: We knew that we were there for the family, because eventually he was going to pass, right?
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[SPEAKER_02]: So we exhausted the maximum amount that we were able to give them, um, because there's a lot of things that they needed and she needed to stay home.
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[SPEAKER_02]: She had three other children.
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[SPEAKER_02]: And then I would say maybe two, three weeks before C.J.
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[SPEAKER_02]: passed, she called me crying.
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[SPEAKER_02]: And she said, Camilla, I got approved for for low income housing.
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[SPEAKER_02]: But I don't have, I have $715 that I don't have.
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[SPEAKER_02]: And we were exhausted with through my list, believe.
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[SPEAKER_02]: So I was able through our community partners.
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[SPEAKER_02]: a garb bank, individual donations that we were able to in literally two hours collect the $750 for her.
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[SPEAKER_02]: So she could move in, so CJ could pass it in their house.
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[SPEAKER_02]: So I know, and I need to bring, I mean, this is, this is what we deal with every single day.
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[SPEAKER_02]: But it's one of those stories that,
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[SPEAKER_02]: You want I felt and we actually went to see CJ the night before he passed away.
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[SPEAKER_02]: So there's so that that is impactful from both our financial emotional.
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[SPEAKER_02]: I mean all of it.
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[SPEAKER_01]: So that's incredibly moving and it's moments like that which remind us why influence matters and is so important.
14:05
[SPEAKER_02]: I agree and, you know, and community partners and sticking together and there's so much as a community that we can do that I never even thought was possible.
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[SPEAKER_01]: Yeah, your book, who are you cancer?
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[SPEAKER_01]: Give children and families a new way to understand something so difficult.
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[SPEAKER_01]: What inspired you to write it?
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[SPEAKER_01]: And what impact do you hope it continues to make?
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[SPEAKER_02]: So my book is a love project and it's based from again, when most parents.
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[SPEAKER_02]: that have a child who gets diagnosed with cancer, we don't know anything from anything.
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[SPEAKER_02]: And I always said, I wish I had a manual that would just explain, line my line of what you can expect.
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[SPEAKER_02]: But there's not such a thing.
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[SPEAKER_02]: I mean, you have experiences that the nurses will share with you, the doctor would show it, but from their perspective.
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[SPEAKER_02]: So I decided this love project took me, and you're gonna laugh.
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[SPEAKER_02]: and it's just because every time I would open my computer to write a little bit more, I would cry and cry and it was in the midst of my awful grief.
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[SPEAKER_02]: And I finally did it, and it's supposed to serve as a guide, open a dialogue about cancer in a very non-threatening manner from myless perspective, from a kids perspective.
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[SPEAKER_02]: Basically, I'm the child talking to another friend saying, hey, listen, we're in the same boat.
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[SPEAKER_02]: Now you can expect this, but it covers the importance of family, the importance of not being fearful, but also it's okay
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[SPEAKER_02]: And I wrote the first book, and now I have, I actually wrote two books, but I only published the first one, and I'm hoping in my very ambitious mind that this could be the door of the explorer for cancer children.
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[SPEAKER_02]: Basically, if your child has going through radiation, you pick up the radiation book and you say, okay, let's read what my last going to tell you is going to happen.
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[SPEAKER_02]: So.
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[SPEAKER_02]: So that's why I'm hoping my dream is that this book is going to be in every children's hospital in the world, because I really think that it would make a difference.
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[SPEAKER_01]: It's such a special project and it really embodies responsible influence in using your or Milo's voice and experience to make something easier for others.
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[SPEAKER_02]: Yeah.
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[SPEAKER_02]: Yeah.
16:44
[SPEAKER_02]: Yeah.
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[SPEAKER_02]: I go.
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[SPEAKER_01]: That's wonderful.
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[SPEAKER_01]: Put that out into the universe for you.
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[SPEAKER_02]: Thank you.
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[SPEAKER_02]: Yes.
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[SPEAKER_01]: In today's world technology touches almost everything we do.
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[SPEAKER_01]: Are you using AI in your organization?
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[SPEAKER_01]: And if so, how has it helped expand your reach or operate more efficiently?
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[SPEAKER_02]: So, I am probably behind the curveball a little bit.
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[SPEAKER_02]: I hate that I love AI.
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[SPEAKER_02]: I really do what I think.
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[SPEAKER_02]: I've always, when it first came out and I said, nope, I'm going to push it away, I'm going to push it away, I'm going to push it away.
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[SPEAKER_02]: And now I've gotten to a point where I almost look at AI in our instance because we use it for
17:28
[SPEAKER_02]: a perfection of a grant rights.
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[SPEAKER_02]: So when you, when we would do grant writing, we put it in our own words.
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[SPEAKER_02]: And then I use my best friend who is this Eloic eloquent speaker and a really good writer that will just perfect what I just told them.
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[SPEAKER_02]: So that's how I look at AI.
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[SPEAKER_02]: So that's the extent of our use so far.
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[SPEAKER_01]: I love it.
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[SPEAKER_01]: That's really a great way to use it.
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[SPEAKER_01]: really just strengthened that, you know, the writing skill, because I'm sure you're learning from it as well.
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[SPEAKER_02]: Yes, yes, absolutely.
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[SPEAKER_01]: Ha, Camilla, what message are words of encouragement?
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[SPEAKER_01]: Would you like to share with our listeners who aspire to make a positive difference in the world?
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[SPEAKER_01]: Especially those who may be facing adversity or loss?
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[SPEAKER_02]: You know, I'm going to focus on the loss, because that's the one that I have a lot of experience within, unfortunately.
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[SPEAKER_02]: Or we, I should say, my husband and I, our, our other two children, we were extremely fortunate to have a great community around us that stuck by us that brought us food that send us messages that came by to visit.
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[SPEAKER_02]: But that community, not as a whole, but a lot of it, after a little bit, it kind of goes away.
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[SPEAKER_02]: So my message today is that remember the ones that have gone through or that have lost someone.
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[SPEAKER_02]: because it's not about the first year or the second year or the third year.
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[SPEAKER_02]: Read that person, really get to know that person because sometimes it's just a matter of, hey, how you doing today, send them a heart, send them a thinking of you, what can I do for you today?
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[SPEAKER_02]: Those kind of messages go a long way.
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[SPEAKER_02]: Empathy, compassion, love.
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[SPEAKER_02]: All of that is what I am so hugely responsive to,
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[SPEAKER_01]: That is great advice.
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[SPEAKER_01]: Thank you for sharing myless story and your mission with us today.
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[SPEAKER_01]: Your journey is a reminder that influence can be the bridge between pain and purpose.
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[SPEAKER_01]: And that when we act from love, we help others find light in their darkest moments.
19:45
[SPEAKER_02]: Yeah, that's true.
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[SPEAKER_02]: Thank you so much for having me.
19:47
[SPEAKER_01]: Pretty long.
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[SPEAKER_01]: Camilla, if people want to get in touch with you or learn more, what is the best way to do so?
19:55
[SPEAKER_02]: So my list belief is our website, M-Y-L-A-S, and then belief is about a little bit differently.
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[SPEAKER_02]: So it's B-E-L-E-A-F.com.
20:06
[SPEAKER_02]: And then my email address is Camila, C-A-M-I-L-L-A at mylistbelief.com.
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[SPEAKER_01]: Well, we'll put all that information in the show notes.
20:15
[SPEAKER_01]: Thank you so much for joining us today.
20:17
[SPEAKER_02]: Thank you.
20:18
[SPEAKER_01]: Amazing.
20:19
[SPEAKER_01]: And to our listeners, thank you for tuning in to Daily Influence.
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[SPEAKER_01]: I hope today's conversation brought you insight and inspiration.
20:25
[SPEAKER_01]: If it's spoke with you, share it with someone who could use a little positivity today.
20:30
[SPEAKER_01]: May you take inspiration from Camilla's courage and ask yourself how you can use your own experiences to influence with intention and compassion.
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[SPEAKER_01]: Remember small actions create big impact.
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[SPEAKER_01]: Keep showing up, leading and growing one day to time.
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[SPEAKER_01]: Until next time, stay inspired and keep having a positive responsible influence.
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[SPEAKER_01]: Bye-bye.