Summer Replay-1-Dr. Dagmara Beine - Navigating Pediatric Cancer

This is our final Season 1 Replay.  Season 2 will begin October 10, 2023 with a brand new Believe Big Podcast episode.

Dr. Dagmara Beine is not only an amazing practitioner, but she truly understands what a family goes through as her daughter Zuza was diagnosed with cancer AND given a very poor prognosis at 3 ½ years old. 

Having worked in emergency medicine for 12 years, Dagmara understood the value of western medicine and how it could save her daughter's life. However, as her daughter moved through her treatment and recovery, she was shocked at how western medicine failed to care for Zuza as a whole person. She knew as a mother and clinician that she needed to incorporate other tools to guide Zuza through treatment and help her thrive as a cancer survivor. She is going to share with us today the tools she found and uses today in her practice.

Updates on the release of Dagmara's pediatric cancer book can be found on social media (Instagram and Facebook):  Zuza's Way Integrative Care

Connect with Dr. Dagmara Beine:
https://www.zuzasway.com/dr-dagmara-beine

Suggested Resource Links: 

• Zuza's Way website
• Zuza's Way Facebook page
• Zuza's Way Instagram page

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Transcript

Ivelisse Page: 0:06

Hi, I'm Ivelisse Page, and thanks for listening to the Believe Big Podcast, the show where we take a deep dive into your healing with health experts, integrative practitioners, biblical faith leaders, and cancer thrivers from around the globe. Welcome to today's episode on the Believe Big podcast. My name is Ivelisse Page, and it's an honor to spend this time with you. A cancer diagnosis at any age is upsetting. but especially when the patient is a child. On today's episode, you will hear from one of my favorite integrative and functional doctors who has helped many Believe Big pediatric patients. Dr. Dagmara Beine is not only an amazing practitioner, but she truly understands what a family goes through, as her daughter Zuza was diagnosed with cancer and given a very poor prognosis at three and a half years old. Having worked in emergency medicine for 12 years, Dagmara understood the value of Western medicine and how it could save her daughter's life. However, as her daughter moved through the treatment and recovery, she was shocked at how Western medicine failed to care for Zuza as a whole person. She knew as a mother and clinician that she needed to incorporate other tools to guide Zuza through treatment and help her thrive as a cancer survivor. She's going to share with us today the tools she found and uses today in her practice. Welcome Dagmara to the show.

Dr. Dagmara Beine: 1:46

Thank you so much for having me. I'm truly honored to be here.

Ivelisse Page: 1:50

Aww, thank you. Well, everyone always loves to hear what everyone's favorite health tip is, and I know you have many, but can you just share one of yours with us?

Dr. Dagmara Beine: 2:00

Yes, my favorite health tip that I have found to be the most soothing for me is instead of waking up and what I used to do is getting my workout in and making my to do list I now wake up and move very little before I put my headphones on and both listen to a prayer or meditation and then do a prayer of my own. And that has helped me tremendously actually sometimes journaling too during that time.

Ivelisse Page: 2:30

Hmm. I would say that's mine too. I mean, it makes such a difference when you start the day in that time of contemplation, prayer, thanksgiving. It really, it sets the course of your day from looking from a different lens and so I love that you do that each morning. So I know that you're in the process of writing a book that is so well needed and it's going to be released later on this year. So can you tell us a little bit about that please?

Dr. Dagmara Beine: 2:58

Yes. Yes. So unfortunately, and fortunately I feel it's a book that needs to be written. Unfortunately, because we don't want a book on pediatric cancer to be needed, but right now, pediatric cancer is the number one cause of death by disease in kids, which is just breathtaking And fortunately, because my journey with my daughter and my journey into the practitioner that I am today I want to take all that experience, both personal, professional, and I want really confused and scared parents out there to have a guide. That doesn't exist. There is not one integrative guide for pediatric cancer on any book list that you look up. And so it unfortunately and fortunately, you know, needs to be written to help so many thousands of families affected, worldwide.

Ivelisse Page: 3:56

Well, we are so thankful that you're using all that you have learned and your journey to be able to help so many people in the future. And I know that guide is going to be essential for sadly for many families that will encounter a cancer diagnosis for their children. And I know that it's going to be filled with much wisdom and encouragement as well, but can you share with us your best advice for parents who hear that they're child has cancer?

Dr. Dagmara Beine: 4:25

Yeah, if I'm able to intersect in these families lives early enough, my best advice is for them to stop and breathe and learn before they make any decisions moving forward. I think it's very important to create a team of professionals and support decide as a family how you're going to approach the disease process and learn a little bit about the disease and the treatment that you're about to sign for because that makes all the difference in many of these pediatric cancer journeys.

Ivelisse Page: 5:03

Yeah. And so who needs to be on this team?

Dr. Dagmara Beine: 5:06

So, obviously, we instantly have an oncologist and sometimes a surgeon involved. But just as importantly, we need an integrative practitioner that's experienced in oncology. We need a good nutritionist, which is quite impossible to find in hospitals these days, and we need emotional support, whether we consider that being family and friends or I tell married couples to get therapists right away because it's one of the hardest things on a marriage to go through a pediatric cancer diagnosis. So all those people are necessary and needed. Oncology does an amazing job with what they know, and they know their chemotherapies, and they know their protocols, but nutrition and supportive supplements and herbs and other tools you need other experts for.

Ivelisse Page: 6:07

Definitely, So I can't even imagine what you and your family have gone through, but can you share with us briefly about how Zuza's cancer was found?

Dr. Dagmara Beine: 6:16

Yeah, in 2015, I had 18 month old little boy and Zuzo was just three, three and a half years old, and both my husband and I were practitioners working in the emergency department. So definitely conventional medicine experience. We sort of considered ourselves holistic, but now when I look back on it we, not really, maybe we bought some stuff that was organic. And we had two healthy kids that we thought we made the best decisions for, and just a very typical story for most leukemia families. If anybody is listening that has a child who was diagnosed with leukemia she started complaining of leg pains. We thought it was growing pains, loss of appetite, little weight loss. And eventually we pushed, which happens a lot with pediatric cancer. We pushed to the diagnosis. We intuitively knew something was wrong and made, you know, the pediatrician do the blood work that they thought was unnecessary. And in February 2015, our lives changed when we were just whisked into the world of pediatric cancer because Zuza was diagnosed with a high risk acute myeloid leukemia with poor genetics. She was actually misdiagnosed first and given the wrong chemo, but then eventually diagnosed and we were given just pretty icky statistics.

Ivelisse Page: 7:43

So that's just an amazing story of discovering that your daughter has cancer and I can't even imagine that, but one of the things that you shared is that you have helped to, to save your daughter's life is you started on a mission to find the best tools to help Zuza's immune system handle the cancer. So what are those things that you discovered or the tools that you still use today with patients?

Dr. Dagmara Beine: 8:09

Yeah, and that's been such a journey and I continue to learn and always have 10 conferences I'm behind on watching. But I can for sure say, I think, I think the biggest message is there's a better way, right? We know that even patients who unfortunately do everything and leave no rock unturned with conventional and integrative care, it doesn't always work. And even Zuza in some way, you know, I'm her mom, we've done everything we can and her cancer has come back. But I can say with certainty that every single patient that I work with, it's a better journey. It's a better way. The symptoms are less. There's less suffering. And I do believe that along with that goes less late effects, you know, less chance of relapse, but we know that's not a hundred percent. Some of the tools that I have found along the way that have not just helped support Zuza, but gosh, at this point, I think hundreds of pediatric cancer cases that I've had the honor to be involved with. So I think nutrition is a big aha moment for many parents. It certainly was for me. When you have a child in a inpatient bed and you know that they need everything to be able to fight this disease and they are telling you that either nutrition doesn't matter or to put PediaSure, which is corn syrup and you know corn starch ingredients, then you have this aha moment of gosh I mean, nutrition matters for regular kids. You'd think it would matter for kids who are going through cancer. That's just common sense. So, nutrition, and in my experience, I have found, you know, meeting a family where they are at. So, you aren't gonna take somebody who has a very poor standard American diet to just doing wonderfully in a week. So, baby steps and just really teaching and educating of what is nutrition, what is nutrient dense food, what are good fats, what are bad fats. So sort of starting there, but taking many of my patients who are currently getting IV chemo and radiation into a state of ketosis and having them be able to protect their healthy cells, reduce side effects, and even have anti tumor effects just from nutrition. What a beautiful, inexpensive tool. So that's, I would say number one and that evolves obviously. Then there's nutrition after treatment to heal a gut right and there's certain key nutritional aspects of cruciferous vegetables to help detox so just using nutrition in different phases of in treatment, post treatment, remission relapse appropriately. Another big tool after nutrition, I would say key supplements. So everybody's different and everybody needs different support because of their epigenetics and the treatment that they're on. So individualizing the care of a child, looking at what chemotherapy was prescribed. and how is it going to be used, and then choosing the right supplements for that child during the right time. So, just very individualized supplemental herbal care. After that, another tool that I love and use a lot is low dose naltrexone. So, there's been a lot of really beautiful data in terms of low dose naltrexone's use in adult and pediatric cancer really across the board. I would say for most cancers and then specifically making certain chemotherapies more effective. And of course we have to talk about mistletoe.

Ivelisse Page: 11:52

Of course

Dr. Dagmara Beine: 11:53

Love, love mistletoe therapy. That can be a little more daunting. I think in the pediatric cancer population, because it is more effective when injected or IV. And so that makes it a little more complicated, but I have actually found from so many kiddos who we have using it in the United States. They do great. I think the adults project that the injection is going to be this very traumatic event and I have four year old patients who at this point don't even want the numbing cream and bring it on.

Ivelisse Page: 12:25

So they're very courageous and stronger than we think.

Dr. Dagmara Beine: 12:30

They are. Yes, kids are amazing and the ones that are very young are blessed to be very young because they will not remember and the ones that are older, we have to grow up so much faster than we, than we want them to.

Ivelisse Page: 12:46

Well, you shared that with the nutrition piece and I'm so thankful that you give them baby steps because so much of this world of cancer is overwhelming and there's so much to learn and so much to know and so adding that piece on its own is a huge piece and I know that kids don't have a huge palette typically, do you find that to be the most difficult side when you're trying to add in that nutrition piece? And how do you get around that with kids?

Dr. Dagmara Beine: 13:12

Yeah, yes. The most overwhelming piece of all this for parents is the nutrition. One, you're right. There's so much conflicting, so many different messages being sent out and they're all directed towards adult cancer. However, because there aren't books written for kiddos, a lot of parents will take that advice and want to do the best for their child and just really not. It's a very confusing world out there, just in terms of nutrition period these days, let alone what to do when you have a cancer diagnosis. I actually encourage most families, when they're in the depths of treatment, to choose to get, especially for little kids, an NG tube, for their kiddos. And that's not a fun conversation because you cry when it happens and you know, but again, I think we project, usually it's a couple hours of discomfort and the next day the kid's, they don't even know there's something on the side of their face. So I, I really pushed for NG tubes or G tubes for kiddos who are going to be going through really intense treatment. I always encourage families to make the changes as a family and not just for that child, the child feels different enough and knows that's, you know, even if they're very young, they know something's different and so supporting that child with everybody getting rid of the sugar and everybody not having maybe the mashed potatoes, but having cauliflower mashed potatoes at dinner. And then just not being too hard, so it's oftentimes mamas that I'm talking to about the nutrition, and they're the ones that wanna do everything perfectly and just letting them know it is baby steps. You're not gonna overhaul your whole kitchen overnight. I ask those families to ask for support. If somebody can make bone broth for you, that's one thing that you just took off your table and they can contribute that way or telling the meal trains that are created oftentimes. Educating them about not just dropping off, you know, macaroni and cheese and pies and things that we know as a culture, we feel like those are things that are comforting. And so we want to give those things to people who have a new diagnosis, but just educating about the importance of nutrition and instead asking for donations for kale and, you know, beets and, and things that we can juice.

Ivelisse Page: 15:31

That's such great advice, and I remember when I was going through my cancer journey, like people want to help, they want to support, and they just don't know what they don't know. And so it was really encouraging to me because I felt like I was putting people out by saying, has to be organic. And, these are the foods that I'm eating and I'm not eating. And, but they're more than happy to accommodate and to help, which was incredible. They felt like they were supporting our family. So that's such great advice to share and to let people know what are those options that would be helpful. Like you're saying, making something as simple as bone broth or purchasing organic produce, is a huge help. And for a family. And I also love that, you know, the support of the family within itself to eat the same foods, I think that is huge. It's, it's a family way of coming around that person and saying, I'm in this with you and we're for you. And I think that makes the transition so much easier as well.

Dr. Dagmara Beine: 16:26

Yeah. And it's, it's a hard transition. It's hard enough for healthy non stressed families to make nutritional changes. And you're talking about people who, I mean, just had their guts ripped out with this diagnosis and that first month you really don't remember any of it. You're on this survival mode and that cortisol and epinephrine and all those hormones that are only supposed to fire when, you know, we're being chased by a bear are now firing non stop. All of it seems so much even more daunting than sometimes it is.

Ivelisse Page: 16:58

So you mentioned a little bit earlier that Zuza's cancer came back after five years. And apparently the statistics were even scarier than before. How was the reoccurrence different than the first time?

Dr. Dagmara Beine: 17:13

Yes, Zuza's cancer, which was like statistically less than a 1 percent chance for it to come back after four years. So we thought we were okay. And obviously knew that we were going to continue on making all the best decisions for her to help prevent late effects. But five years to the day later, we found ourselves back in the hospital with a relap. And the statistics on that, yes, were terrible. And we knew that our only option at this point, conventionally moving forward, was a bone marrow transplant. But I have to tell you that, so five years later, Zuza received the same chemotherapy that she received five years before when she was three and a half. And now when she relapsed I had already become the practitioner that I vowed to myself I wanted to become when five years earlier I couldn't find somebody like me to help us, right? Now five years fast forward, I know what to do. I know how to support her. I know what we need to do and same chemotherapy five years earlier, she had every side effect. She had every infection. She had mucositis, which are like ulcers you can get between your mouth, your GI tract to your anus. She had just every complication you could think of. And then now fast forward five years later, and we obviously worked really hard during those five years to heal her gut and to detox her as much as we could. She was in really good shape otherwise, obviously other than leukemia coming back, and went through the same chemotherapy and she had no side effects when we supported her the way that she needed to be supported. In fact, she went on a chemo that normally keeps you in the hospital for 45 days, nobody needs you for 45 days because your immune system doesn't recover. And I believe we were out on like day 27, no mouth ulcers, nothing, no fevers, no neutropenic fever. I mean, nothing, nothing. And we, we did it in ketosis with an NG tube. Because she knew I'm not gonna wanna take all this stuff mom wants me to take. Just let's just do the NG tube. We did mistletoe through chemotherapy and because of that, she didn't have the side effects. I believe because of that, she wasn't neutropenic for long. You know the important supplements for her that made sense for her chemotherapy that they use, but it gave me this really crazy comparison. It's unfortunately through my own child of what a difference integrative support can make. And then she proved that over and over again, when she had a transplant and I had fingers waved in my face that she's gonna get kids get mucositis a hundred percent of them. She's going to be on morphine. She's going to be on TPN and she was none of those things. There is a better way. If I could go on top of a mountain and scream, I'd want all these families to know that there is a better way and your child deserves the better way, you know?

Ivelisse Page: 20:09

Absolutely. And I think parents don't know what they don't know. And I think that's what this podcast, I hope that everyone shares it and sends it to everyone they know, because these are tools and information that every parent needs to know. And whether you're a pediatric cancer patient or adult, you know, adding in the integrative medicine really, if anything else increases your quality of life going through something that's most difficult. As painful as it was for your family with this recurrence, I truly believe, that God never wastes our pain. And what you learn through that first cancer, not only has helped your daughter to respond so well this second time, but I just know the hundreds of patients that you're impacting now that would not have never known this better way had you not gone through what you went through. So that's just so powerful to me to sit in that and to think about that for a moment. And no matter what we're confronted with in our life, that we can use what we learn from that for possibilities for others as well. And I was recently at a conference and I I read that 90 percent of pediatric cancer patients have late effects.

Dr. Dagmara Beine: 21:20

Yes.

Ivelisse Page: 21:21

And at this conference, one of the survivors who was a pediatric cancer patient, she had gotten lymphoma at age 19 and she was on the older side of that. But she said what she said next really took my breath away. And she shared that the average pediatric cancer patient by the age 50 has on average five to seven life threatening health events. And she said these words and it just kind of made me hold my breath. And she said, the treatments that saved my life are now taking my life. And that's where your better way comes in. What you have found with Zuza this time around. So you've shared the mistletoe and other, but how can people know about how the late effects can be reduced or completely avoided. So you mentioned ketosis, you mentioned mistletoe. What are the other things?

Dr. Dagmara Beine: 22:12

Yeah, you know, it's also looking and finding out what led to this cancer. 90 to 95 percent of cancers are epigenetics and environmental factors and every single parent gets told it's just bad luck. It's a fluke. It's nothing you did. It's not about blaming the parent, it's about educating and so we need to look at that child's terrain and we need to figure out what helped us get here? Was it the roundup that you apply four times a year on your lawn? Was it the divorce that emotionally weighed on your child because you still bicker all the time? Was it the one that they have a PON1 epigenetic hiccup and we need to support that because they absorb glyphosate like a sponge and can't get rid of it. So it's really identifying what led to it so that we can make the best decisions. When we go back to our new normal, we're not putting that child back in the same situation that helped contribute to the cancer diagnosis. And then gut healing and detoxifying after the conventional treatment is done is everything. If we wouldn't have worked on Zuza's gut for five years, who knows how well she would have handled the transplant or even been a candidate to have one. And while we never want to think about our child's cancer returning, we always want to have hope and do everything we can for it to not come back. We also have to think about the fact that if it does, we need to do everything we can in between to strengthen that child to be able to have an opportunity to potentially use some treatments that unfortunately are toxic.

Ivelisse Page: 23:58

A hundred percent. So what is your best advice to parents who want to approach their child's care in an integrative way and their child's oncologist is not very supportive of the idea?

Dr. Dagmara Beine: 24:09

Yes, so I feel like we need to know that we are the CEO, we are everything for this child and one doctor, one member of the team is not healthy and is not, is not good enough. And so we need to continue to look for conventional teams that are open and willing to work with other team members. Hopefully, you know, there's a lot of the beauty, right? There's a lot of bad, but there's some beauty in social media and that is the ability of all these parents across nations and states to be able to communicate already which hospitals are more open and parents making different decisions on taking their kids care across states because they want to have an integrative team member. So really standing up for our rights, standing up for our kiddos.

Ivelisse Page: 25:01

Well, I couldn't agree with you more. And it's one aspect that we try and convey to be your own advocate and in this case, the advocate of your child. No better way to end this podcast than by those words you just shared. And so thank you so much for joining us today. I know that there are going to be many families who hear this and share this with others, and it's going to empower them with the tools of information they need to take those next necessary steps. Thank you for what you're doing and how you give to so many patients each day and the hope that you provide. We are so, so grateful for you.

Dr. Dagmara Beine: 25:39

And thank you so much for having me and just being able to reach more people. That's what it's all about. Right?

Ivelisse Page: 25:45

Absolutely. Take care.

Dr. Dagmara Beine: 25:47

Thank you.

Ivelisse Page: 25:55

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