She got the diagnosis that nobody wants that her four-year-old son had a brain tumor and somehow through this process, through this process of initially being lost and confused was able to turn what could've been a tragedy into an opportunity.
An opportunity to really transform healthcare as we know it, to get culinary medicine into part of cancer care and into part of just care in general, specifically focusing on whole foods with a component of low-carb and ketogenic diets to help the patients not only treat their disease but treat themselves.
And then that also evolved into lifestyle therapies in general, not just for the patient, but for the whole family and the building of this community, what they have accomplished is fantastic and the message of paying it forward, the message of giving back is a message that we can all learn from. So I really hope you enjoy this very powerful and touching interview with Audra Wilford.
Hi everybody, quick break in the interview here. I want to talk to you about exercise. How do you feel about exercise? We've heard it time and time again, you can't out run a bad diet, and there's definitely truth to that, but the flipside of that coin is exercise is still important for health, for strength, for longevity, for health span, for so many other different reasons. But how to get started if you're not already an exerciser?
Well, we've got a course designed specifically for you. It's called the "Let's Get Moving" course and is free for Diet Doctor members. So go to DietDoctor.com and look up the "Let's Get Moving" course to get you started on your exercise journey. It's designed for people to help you learn the basics, it's got a low barrier of entry, so you don't have to go pump iron at the gym, you don't have to go run marathons.
It's a much easier way to get you started on an exercise program that's going to benefit your health. And as long as you're paying attention to your nutrition and following a low-carb diet, it's probably going to work synergistically to help with weight loss, specifically with fat loss or maintaining lean muscle mass and promoting health. So check out our Let's Get Moving Course to help you get started on your exercise journey. Now back to the interview.
Audra, thank you so much for joining me today on the DietDoctor podcast.
And it almost makes me just want to cry even thinking about it and somehow you were able to go through that journey and turn that experience into an amazing opportunity to help educate the world really about navigating a cancer diagnosis and what can be done from a patient and a family support perspective. So if you can, sort of walk us through that whole journey. I know it was a long arduous journey, you don't have to hit on all the points of it, but give us the sort of the highlights of what got you through it, how you got to this point.
I had heard of leukemia but as a parent I didn't know what happened within the walls of the Children's Hospital that was up the road from us. I had no idea. And at that moment I was inducted into a family and a community a club, if you will, that no one wants to be a part of.
But we were told that Max had a life-threatening condition, he had severe hydrocephalus, his brain was hemorrhaging, and he was rushed into emergency surgery and right after that I think strangely enough the biggest gift that we were given while Max was still intubated, post-surgery for days, our neurosurgeon came into us and he said, "You're going to start talking to oncology, and what they're going to present you with, our options to try to get more quantity of life and at some point that will compromise the quality of his life, and I'm going to ask you to agree with me here that at that moment we stop treatment and you simply focus on his quality of life."
This is something that is- there's long-term care involved in this. And I think that that was a perspective shift for our family at the very beginning which was to learn that our son was diagnosed with cancer and we have this acute moment of focusing on saving his life but it was going to require so much more than that. And so what happened for us, I've been a cook in the past, and so I had good culinary training and I just knew that the seed was planted with quality-of-life.
What does that mean for us? What can we do? And I thought, what can I cook for him? We've got to be able to deal better with this. And a friend of our son has the book Anticancer, A New Way of Life by Dr. Servan Schreiber. And it's a beautiful memoir, an amazing book and it really does speak to lifestyle medicine in brain cancer, sort of a brain cancer diagnosis.
And I think that's what set us off on the path initially to start, was focusing on where we could be empowered in the journey. Prior to becoming a cancer mom, I was a leadership educator as well and one of the things that I really focused on was the concept of being proactive and what we can do in a situation where my son was victimized by cancer in a moment in the moment of diagnosis, absolutely a victim of cancer.
But after that we have the freedom to choose our response. Who we want to be in this? How we want to show up for him? How we respond to this trauma is really up to us. And so we really focused on that trying to figure out how to make cancer give and do more. We immediately focused on giving back and we immediately focused on how we could help our son thrive through this process.
Not knowing how much time he had, not knowing what the course of treatment would be like, not knowing what the outcomes would be but how could he thrive day-to-day. And those were the factors that I think influenced us. In some weird way something you're never ready for I felt ready for in a very, very strange way from- You know, peaks of the life experiences we have.
And so I made every mistake you could make when it came to modifying his diet and cooking. So we started with removing all added sugars. We read about Robert Lustig to get; this was in 2011, it was fairly early. And so we read everything that we could. With thought, we can remove added sugars we know that's a problem.
And somebody mentioned to me at one point, "You know, these grains and starches metabolize and basically turn into sugar." And I'm Italian... there's no way you're telling me we have to stop having noodles. It was pretty mind blowing to me. So we were fortunate in many ways to have the time to make the mistakes and to uncover what was going on.
Max's tumor is not a glioblastoma and it's something that we found out along the way, we were able to carve out some time, we had time to make the mistakes, but the commitment we made very early on was that any other family who comes into our community wouldn't have to make the same mistakes that we made.
And I wanted to be able to advance this for others, so that where we started at step one, they could start at step 10 and not have to go through the same mistakes. It's also a very expensive process. We were fortunate to have a beautiful community that stepped up to support us, my colleagues at my job at the college that I worked at gave me a year of time. Their sick and vacation time, pulled it together so that I could be with Max for that year. So I walked into that time saying, we've got to pay it forward, there's got to be a way that our learning could benefit others, especially because we are on a non-conventional path.
And we built a community in that time. What sort of happened is that we started gathering with parents who identified the same opportunities in healthcare to bridge those gaps. Again it's understanding that this is a space of acute care, but what about the health and well-being of our children and of our families? And together as parents we started bridging that gap together.
And happiness is a big part of it and a lot of the times that takes the form of you know sugar and cookies and sweets and hit those dopamine receptors and make them feel good. And this is sort of the opposite of saying, we want to protect your body and your healing more than hitting those dopamine receptors who are going to restrict all those things and take those away. Was that a challenge at first?
So we I think immediately knew that we are focusing on provision of quality time for our child. And we really had to change the narrative for ourselves first. And that was 0.8; 0.8 is not the nutrition part of it, it's the mindset shift. And it was saying, we are not depriving. And we had to go to our grandparents for example and say we're not depriving him of anything, we are providing the highest quality of life; this is such a priority for us.
And those moments of happiness with a cupcake, as they could potentially shorten his life span as they could give less quality time, as they require then at some point that he is on steroids and a number of other drugs because we are creating an environment for him that is less- he'll be less healthy. What type of happiness comes from that?
And then you have the alternative medicine world; folks saying you're killing your kid by doing standard of care. You should be doing A, B, C, D, E and F or things that FDA hasn't approved that is only available in Belize or whatever it might be. Very stressful to hear from folks that you are killing your child by doing what has a base of evidence to it.
So what we looked at was how can we improve his quality of life, where is their data somewhere, somehow, that demonstrates that this could help our kid without doing harm? And as we want to take in all of the above approach, show me everything that could help. And in that space we found our own plan and that includes acupuncture, traditional Chinese medicine for us, and nutrition, absolutely a huge part of it.
But we did have to sift through various ideas of complementary therapies and I think a lot of this comes down to the threshold for the family, what serves you as a family. It's not going to be the same for everyone. But what we did was we teased through the evidence and now we help other families do the same. There are other organizations that focus specifically in alternative medicine and we are not that organization.
We are focusing on something where we feel there is a good enough base of evidence, good research, peer-reviewed studies, so we have kind of a foundational approach to that, that we feel like is important. My husband has a PhD in public health, he has been coming through the med libraries and things like that in his works so I think that's helped us a lot with our information competency when it comes to really breaking down the studies and the data.
But the first moment for me that was really pivotal for this was somebody gave me the book, The China Study. I was in MRI with Max waiting, and, you know, reading this book... It was stressful. I started to think and feeding him dairy and I am killing him, right?
You know, that's the only lesson from that. But there is such a motion and vitriol, and the suggestions out there from the world can be really devastating to a family that's already experiencing trauma, loss, financial instability, on and on and on. So we try to de-escalate the stress in those situations and we have experienced it ourselves personally and find what is empowering in this base, what seems to work for us and serve us.
His dream is to live on a low-carb diet long-term. He has experienced a therapeutic ketogenic diet and for him he misses the protein. So he would like to have a low-carb diet going into adulthood, but it's been instrumental, I mean in his plan it has the ketogenic approach we have used alongside standard of care and with phenomenal results. We feel like his quality of life has been amazing after every surgery.
He actually just had a brain surgery on November 25th and he was doing... eating salmon three hours after the six hour surgery and he was doing squats the next day and the team said this is just unreal how can someone recover from a surgery like this. So it's not just about enhancing treatment efficacy or combating, you know, the cancer. It is also about that powerful quality of life that comes from being well. So we treat them as if he's an athlete, more than a patient.
Because those diets need to be higher in fat and lower in protein. So sort of the 4:1, four times fat as compared to the protein and carbohydrate combined, so the very specific version of the ketogenic diet. And a ketogenic diet which he sounds like he's transitioned to is more of sort of the moderate protein low-carb and variable fat type of diet.
And I thought they'll need a receipt; I'd better start a nonprofit. So actually when we started MaxLove project it was intentionally not MaxLove foundation or anything like that. It's a project because we're doing something very active to support others and we saw this as an opportunity to solve a problem, drop the mic, move on to the next problem. So we're very intentional in being a very active organization in that way.
But we started out as a service project. And you know, I thought the company it's going to need a receipt, I'd better start a nonprofit and started it for that reason. But within a year of distributing these twilight turtles, these nightlights, really helping Max grow as a person while going through this process, it became really clear that we needed to do more and we started showing up in a different way.
So while started as a service project, it pretty quickly transitioned into something that is designed to fill that void that we found in our own health care with this community of families and advocates that we had built. So I started offering cooking classes in the community. One of the things that that presented was how is Max doing so well... he didn't need blood transfusion going through chemotherapy.
He never had a neutropenic fever that results in hospitalization. I mean he was super well. So I started offering the cooking classes to share how I was transitioning his diet and food and sharing the knowledge we were building. We started to build educational materials and send those out and really started to build that platform of creating community with the families that we serve.
And now, gosh, probably 6 1/2 years after being at that point, we have a number of Children's Hospital partners, we have a mobile teaching kitchen, where we have a really unique culinary medicine program specifically for pediatrics. No one else is doing what we're doing. We have- this program is tailored for the needs of hospitalized kids from the NICU to the PICU and all the clinics in between so-
How can we get this?" It's infectious. So for us it's actually been kind of a Trojan horse, a good Trojan horse. And so what we're doing is sneaking in real food. The conversations on health and wellness have now pervaded the hospitals we work with. So we're working with associates- so the HR department for example is utilizing the program for their wellness program. Because one of the biggest costs to any hospital is actually their own healthcare cost for their own associates, right? So we are a part of that answer-
One of our partners is the University of Arizona and their nutritional sciences department. They have students testing all of our recipes right now in a lab and so these are nutrition students who are supercharge about culinary medicine. They are learning and that's just... the most wonderful thing to me to see is just the layers of evolution and learning and growth among everyone involved.
And what I found in all of our partners is that people want to do better. They want the system to serve patients better, the clinicians we work with are almost desperate for something to give their patients to improve their quality of life. They're tired of seeing poor outcomes, they're tired of the misery, they're tired of the pain, they're tired of seeing their cancer patients who are five years post treatment and struggling to hold down a job, they're struggling with obesity and diabetes, secondary cancers are late effects of treatment, because they don't have a true health and wellness paradigm in place.
The biggest need that we see with almost any hospitalized family is going to be- there's a high utilization of processed foods. So if we can make that first step into making utilizing whole foods powerful, then we're getting somewhere. So the reason why culinary medicine as a term is so significant to us, is that what we've seen- I went to culinary school, I learned the skills.
So when it came to modifying food for my son I had a significant skill set to do it and still was frustrated. I still came up against raw box. I thought what is a mom when she doesn't know how to cook or like to cook?
We need it in our schools, we need it in our libraries, we need it in our hospital, we need it everywhere. But we're taking on our little chunk of that and if we feel like we can empower families to do a little bit more in the kitchen and start building that interest and knowledge base, then we will start accumulating positive health behaviors and it's going to only escalate the good for a family. So that is kind of our basic foundational perspective; we call it fierce foods.
So that's our foundational approach, we then have opportunities to grow in that. So for some families, there are many families who would really, really benefit from a therapeutic ketogenic diet or some version thereof, or really great low-carb approach. And we work with families personally and directly to help identify what's best for them. And it's really different for everyone. But we start with a platform of whole real foods and then we go from there.
My son didn't need steroids going through any of the treatments he had, like radiation for example, because he was on a ketogenic diet and he did beautifully well not needing that medication.
Different versions, like ice cream Carnation Instant Breakfast, sweetened milk... it was all sugar and some fat, but it was basically all sugar. And I looked at that and I said, I've read that York Times article that just came out in January with Gary Taubes, like, you know, the Robert Lustig, Is Sugar Toxic... This isn't making sense for me just as a normal parent, you know.
Questions about this as it was or as it stands and today same hospital when a family is diagnosed, they have their oncology dietitians are fully versed in the ketogenic diet, and the shake menu now includes avocado and whole foods blended. It's a totally different scenario.
It's used in schools and a lot of community organizations, they do a wonderful job, they are an amazing organization, but we ended up really deciding as a team and this is our culinary medicine collaborative and we have partners from Willette Children's Hospital in Savannah, CHOC Children's in Orange County California and the University of Arizona working on this together.
We decided we need to make our own curriculum. So we're now using a mobile cart that is actually a little bit different and it's lighter and it's just structured differently. But we're learning, because we have to deal with hospital fire code regulations and sanitation and on and on. There are a lot of layers.
We quickly learn that mindset is important, that mindfulness stress reduction, significant sleep, physical activity, our community... there is significant research to show that our communities are therapeutic.
The other thing that we learned is that there's no patient, a child in isolation, that we thrive in communities, but in family units and so providing care designed simply for the child is really not quite effective especially when it comes to lifestyle medicine and health behavior change.
We started to learn a lot about a trauma; trauma in the family, trauma for the parents, grief that- unaddressed grief from the beginning when your life changes overnight leads to a good amount of PTSD and resulting traumas and difficulties that make it very difficult to engage in lifestyle medicine health behavior change.
So we started to build a lot of programming around this. You know, acupuncture for the whole family for example and a lot of our programming is designed to support parents. We have a support group of over 1300 parents-
So the Ohana project came out of that. We actually had a- it's an IRB approved study with the Children's Hospital of Orange County and we delivered a core set of services to the whole family, included health coaching and nutrition, cooking classes, acupuncture for the whole family, yoga for the whole family, health education, health behavior education workshops and we found significant improvement to quality-of-life.
My husband who teaches at UC Irvine in public health and health behavior change designed and assessed this study and he can speak to the results beautifully so much better than I can. But really at the end of it, what we found was significant improvement in quality of life and a whole host of different measurements.
We see this as the potential and the future of healthcare. It's really functional medicine at its core I think in many ways and designed to support and serve the whole family and this is when we start to see real changes for patient short-term and long-term.
And I mean you really are changing the face of healthcare and certainly cancer care and healthcare in general by implementing this... I mean it's amazing.
And this is done in a family unit. And we had so many parents come through our programs, saying, we entered in this for our child, but this saved us, you know. I didn't know that maybe I had metabolic disease, I didn't know that I could reverse my obesity, I didn't know that I could address my type 2 diabetes this way. And you start to think there's a glimmer of hope at that point that this is what we need in our healthcare system. This is exactly it.
We get so wrapped up in our own lives about how busy we are and the things we have to do and how terrible the things that we're confronting are, they are nothing compared to what you had to go through and the way you were able to turn this around and the lessons you've learned and the lessons Max has learned. I mean it's a remarkable story that I think everybody needs to listen to and help themselves in the perspectives, their own thoughts about how they interact with the world and give back to people into perspective.
So you never wish that anybody goes through this, but you certainly wish if they have to go through an experience like this that they can turn it into something exactly like you have and that's remarkable and very commendable. So thank you for that, for sure.
It's such a powerful book and part of that is the empowerment that comes from giving, especially when facing grief and loss which in any journey that's like a child cancer journey, even when a child survives there's grief for the life that you were lead- the way that life changes, there's grief in that as well. But we also have a significant number of bereaved families we work with.
So in addition to the social support that we provide, online support, the cooking classes in the hospital and the community, we provide a good amount of social support based services directly in our community, and that includes a good amount of work in bereavement. And once a family starts with MaxLove there's never a point where you're excluded. We are always in our family and that includes the entire timeline.
And our focus on quality of life extends to the entire family. And so after a child dies from cancer or something related to the treatment, you know, the family is usually left with nothing. The support system that was there when the child was in treatment is gone.
And we will always be a family and we will always be there for these families and everything that we do in our B super action plan applies to a family from day one of diagnosis through the grief and bereavement process and it's all about optimizing our quality of life and living the best days possible with the time that we have and whatever the cards were dealt.
You are helping children fighting cancer and rare diseases and those immersed in the healthcare setting because we need to change the entire environment. The standard American environment or standard any other kind of location environment needs to transform for all of us.
And so the folks that are involved with Diet Doctor which is one of our primary sources actually for our families. We love what you all do. And your listeners, those who are participating, are really active agents of change for us. We depend on everybody to elevate this base and to bring the messaging forward so thank you.
