Follow The Brand Podcast with Host Grant McGaugh

Breaking Barriers in Cancer Care: The Extraordinary Journey of Rochelle Prosser

• Grant McGaugh CEO 5 STAR BDM • Season 6 • Episode 43

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Join us for an impactful episode where we sit down with Rochelle Prosser, a powerhouse in healthcare advocacy and the founder of Orchid Healthcare Solutions. Rochelle's life changed dramatically when her family was struck by cancer, leading her to become a fierce advocate for better care. With her extensive background as a neurotrauma ICU nurse, she shares her unique insights into the challenges of navigating the healthcare system from the inside and the outside. 

Tune in as Rochelle recounts her touching journey, from the heart-wrenching decisions in her daughter's fight against cancer to her husband's own cancer battle. She discusses the three pivotal barriers that hinder access to quality oncology care—knowledge, access, and effective navigation of the healthcare system. Discover the vital importance of being informed and proactive in treatment decisions, the emotional complexities that accompany these journeys, and the monumental efforts needed to advocate for those you love. 

Through her organization, Rochelle empowers families by providing crucial resources and knowledge to help navigate their cancer journeys. Listen in to understand how her story can inspire change and make an impact on the lives of those facing similar trials. Subscribe, share, and spread the word—let’s create a community of informed and empowered patients together!

Thanks for tuning in to this episode of Follow The Brand! We hope you enjoyed learning about the latest marketing trends and strategies in Personal Branding, Business and Career Development, Financial Empowerment, Technology Innovation, and Executive Presence. To keep up with the latest insights and updates from us, be sure to follow us at 5starbdm.com. See you next time on Follow The Brand!

Speaker 1:

Hello everybody and welcome to the Follow Brand Podcast. This is going to be another impactful episode where we're going to dive into leadership, innovation and transformation in business and healthcare. And today we're going to really get into a topic that touches millions, and that's cancer care, patient advocacy and healthcare technology. And so we're going to highlight Rochelle Prosser, and if you don't know her, you're going to be impressed with her background. She's the founder and CEO of Orchard Healthcare Solutions. She's a leader in health information technology and oncology advocacy, which is so important, and she's a member of the Office of the National Coordinator Health IT Advisory Board and a cancer care equity and survivorship champion. So, rochelle, she is transforming the landscape of oncology care through technology, data-driven solutions and patient advocacy, and her mission is to bridge the disparities in cancer treatment and access for vulnerable communities. So I want to bring her to the stage, have her introduce herself and we're going to understand more about what her, what inspires her to be the person that she is. So you'd like to introduce yourself?

Speaker 2:

Thank you, boy. That's a hard one to follow, but thank you for that wonderful introduction. So nice to meet all of you. My name is Rochelle Prosser. I'm a 30-year neurotrauma ICU nurse. I actually emigrated to this country from Canada about 25 years ago and, after getting married and having children, cancer visited me in a way that was unintended and unimaginable. Both my husband and daughter were diagnosed at the same time, and through going through that journey, which we will talk a bit more later, it was the impetus to say I really love data science, I really love nursing, and there's got to be a better way to be able to bring the participants of cancer care more to the forefront and foster excellent communications. And so that was not available to me at the time when both my husband and daughter were diagnosed, and so I set out and set forth through Oregon Health Care to do that for the general public through Oregon Healthcare to do that for the general public.

Speaker 1:

This is important. We're going to dive in because I had a conversation with you last week. We got together, We've talked, We've been going back and forth on LinkedIn a little bit, but we had to have that moment of a true human-to-human interaction. And then when we did, I was just floored by your story. Your story is so, it's intriguing, it has a lot of drama within it and you wonder well, what happened next kind of thing. I need you to share some of that story because your personal story with healthcare and I want to frame this so people understand what a cancer journey really is, can be like and what you need to do within your own self. Now, you, you've been in healthcare. You understand, you, you, you. You are a provider of healthcare, but when you're on the other side of the ball it's a different animal.

Speaker 2:

Different ball game. It's a different animal.

Speaker 1:

So, I want you to start tell us that first, that you know story around how you. You know first story around your first battle, let's say in the cancer journey, and then we'll continue on from there.

Speaker 2:

The first battle was are you going to treat me or not, like that? I mean, it is down to that level that you've received the diagnosis and can you even convince the healthcare provider to treat you? Because for my daughter's case, she had stage four. It was out of her brain, it was down her brainstem and we didn't know just how prolific it was in her body until later on in years as medical technology caught up to us. But at that point, being four and having such an extensive tumor in the brain space, occupying tumor in the brain, it really was devastating for her age.

Speaker 2:

And you have to think your kid is at the infancy, the dawn of their life, and they have most of their brain covered in this tumor and the side effects of having it. And you've got to treat your health provider to say no, I'm not going to take her home, I'm not going to take her home and make her comfortable. You're going to do something and know that and find out. Ultimately there really wasn't anything for them to do but you could try this that works on. You know it's an 80% chance on this population based on that drug. But we've never tried it in girls and we've never, definitely never tried it with African-American people period.

Speaker 1:

Yeah.

Speaker 2:

Okay, this is a conventional treatment. You're going to hold on to that and say, okay, we're going to go ahead and do it and you're rolling the dice. But you're rolling the dice with your kid just to try, just for the right to try. So that's the first your daughter.

Speaker 1:

At the time you said she was four years old she was four and she was four, she's diagnosed with cancer. The doctors have then told you there's nothing more, we can do Nothing, and then you go into action.

Speaker 2:

I go into action because one of the other physicians had said it quite eloquently. When I asked why me? You know, and you're where's Waldo moment? And he said why not you? You've been a neurotrauma ICU nurse for 30 years. You've seen this. You've seen this more than everybody else, so why not you?

Speaker 2:

So let's change your perspective and let's get this done. And I'm just like, okay. So you pick yourself up and dust yourself off and say, all right, we are going to have health care delivered on us. And remember that, as a health care delivery person, you have in your mind the connotation of what that is, what you have doled out to everyone else. This is my grandmother, this could be my husband, this could be my spouse, my brother, my sister, and so you want to give as excellent care as possible.

Speaker 2:

But then, when it's reversed, it's a whole different thing. That aspect of this is my family member. Yes, it's on that provider's mind, but they're also don't want to do harm. So when they do that risk analysis in their head, do we give this person something or do we let the family just enjoy what's left of the life that's there, with quality and dignity? These are the things that are playing out in these healthcare providers' minds every single day.

Speaker 2:

So when they say no, it's because the treatment is not good for now. It's for now, in that moment in the toolbox that you have. It's not forever. But you, on the other end of that, when you have that terminal illness and it's your kid, nobody wants to hear that? Absolutely nobody. Nobody wants to hear that. And so I started asking, and I knew that there were others in my professional community that, if those'm just going to tell you this, these are the two doctors you need to talk to. You need to talk to this hospital. Give them a call before you say no, just find out. And that was the second hurdle the barriers between professional and facility organizations.

Speaker 1:

Yes.

Speaker 2:

They don't want to talk to each other because you know it's their area. It's their area expertise and you're talking about sometimes removing business from one entity to another.

Speaker 1:

You're also talking about the potential of clinical research, data gathering, right, right like let's just be real about it hey, I want you to be as real as possible in this whole discussion because this, this journey, unfortunately, I would hate anyone have to go on this journey, but if you are on this journey or you you may be on this journey you need to understand all facets of what you're about to get yourself into and some of the things that you can do on your own to help to get to a better outcome. You can't always leave it up to the provider that you're with. You might need to go to another provider, you need to get another look at certain things, because it's just not an exact science and because you just happen to be in the business right, you knew these things and you shared with me. Not only did you have your daughter's journey, but then you had your husband's journey.

Speaker 1:

And the fact that you are a neurosurgeon or you're in that I see a nurse. Thank you, thank you, I see you. So you've seen it. What is like on the other side of the ball?

Speaker 2:

Yes.

Speaker 1:

I want you. This is one story you got to tell this because I was just just blown away when I believe it was with your husband and the things that he was going through, and that you had to have a conversation directly with the provider and they had to.

Speaker 2:

You know, you basically had to self-diagnose and go from there, yeah, so my husband is a lung cancer survivor, doing very well, and so he ended up having a weeping tumor. So to explain what weeping tumors are in the lung, so the lung is a very pliable. It expands, it retracts as you breathe. But what's happened is it's attached itself to the lymphatic system, and the lymphatic system is where the water, that is, the plasma within your blood system, that's where it goes up and down as your heart beats throughout the body, and this tumor had encompassed into that area. So, because you're blocking your lymphatic system, the water has to go somewhere. You're either going to breathe it out as vapor or it's going to pool as liquid in your lungs, and so he was drowning in his own fluid. And so by the time I had gotten him to the hospital him being a truck driver, commercial truck driver and his route did not bring him to where we live in Florida, you know, he was in the Northeast and then the Southwest. It didn't bring you all the way deep Southeast, you know. And so I had to work with his team of deliveries to say, hold him in a spot where I could get to him, to force him to come home and seek treatment. So that was one To thy own self, be true. Get out your way and see when you're sick. All you men being very stubborn, get out your way when your wife is talking to you. You need to take care of yourself, take it seriously, because those decisions do affect your family, financially, et cetera. And the longer you leave it untreated is the worse they get.

Speaker 2:

But he was signaled to me by one of the healthcare providers up in Georgia because he had high blood pressure and he didn't realize he had high blood pressure but he had a headache and so he went in to seek care and so he put me down as the emergency room contact and because he wouldn't go to the hospital and get checked, the emergency the urgent care doctor called me where I live in Florida to alert me to what's going on and maybe as a wife, I could talk some sense into him. Quote unquote for this provider. So I already knew what was going on and I said you know what are you going to put him on? I can't bring him home, he's not going to do that, he's not going to listen to that part, but maybe I can help you by putting him on something that won't hurt him.

Speaker 2:

And so some of the drugs that we have to bring high blood pressure down really quickly actually are caustic to the kidney. When I say caustic, it will kill the kidney if you're African-American, and so it works well in one aspect. By quickly bringing it down, but sustainably over time, you're actually doing harm and causing yourself to have kidney disease, kidney damage, chronic kidney disease and ultimately, dialysis. Nobody wants that, and I'm not talking about just one and done. I'm talking about blood dialysis for an extended period of time until you can get a kidney transplant.

Speaker 2:

So it's very important to understand what drugs you're taking and putting into your body, based on your race, because it will make a difference long-term whether you will develop chronic disease. So the first thing I did was ask the provider to change his medication off of one of that drug to something that was a that was more beneficial to the kidney, so that allowed me time to then make a plan to get him home. So once we got him home, so they wanted to put him on a clinical trial, and when we looked at that clinical trial, the people that were randomized on the old drug that they were using- most of them were dying, if not all, but the other 50% that was randomized to this stem cell drug drug combination, they lived.

Speaker 2:

After three, after three doses, their cancer was gone, completely gone. And so, looking at that and learning that now that he's stable and he's gotten past the pneumonia that he developed from, what are we going to do? How do we act? I realized, based on his insurance offerings and the authorizations, they had him on the wrong drug drug. They had randomized him to the drug that was going to kill him. And the only reason why I knew this was because I was working in a facility at the time that was looking deeply into that, the outcomes of those clinical trials, and then reporting back to the healthcare community within the organization. And so I knew this was, this was not, this was some bad juju. So I needed to get to his provider, because my husband was seeing his provider that day, and and so I went down, I went into the office, you know, and he was at my facility that I was working at, but I wasn't going to use my ID to get in there, I was just a wife, and so in hearing the conversation, I'm like honey, we need to get up, we need to leave. No, let's go, let's go. We got to go and he's like but, rochelle, we've been waiting for this. I said no, no, no, we got to go now. Do you trust me? If you trust your wife, get up, let's go. We got to go. He's like why? Then we'll have a conversation. But right now he's like okay, just just tell me. I said well, I'm afraid your provider is going to give you the wrong drugs and I'm coming from that conference and I'm here because we're about to make a bad decision and that is going to have long-term consequences because you have young children. Long-term consequences because you have young children, very young children, and I'm a, and we are a, young newlyweds and I will be damned if I'm going to be a single mother of two in my thirties. Not going to happen. So you and I need to get up and leave. And he's so.

Speaker 2:

The healthcare provider was like well, well, well, wait a minute. I said well, here's the insurance payment period you randomized us to here. He's like yes, I did, because that was a conventional treatment. And I said yeah, your conventional treatment is wrong. And if you're not going to put my husband on the right treatment, or at least be willing to listen. Then he and I have to go because we don't have time for this. And the healthcare provider's like, okay, okay, okay.

Speaker 2:

And he pulled the actual clinical trial study document that was released and he said I was looking at this and I knew we had a conference here today, but your husband was coming to visit me at the same time as the conference, so it was more important for me to care for him than go to a conference. So tell me what you learned, because I think I agree with you. I said, fine, if you agree with me, great, put him on that, put him on the stem cell drugs, and I'm good with it. And my husband types up and he says well, hold on, wait a minute. What made you even think that I was willing to even do chemo? And my surgeon says we're fine, but we know now in technology that cancer cells sometimes do migrate or you have other cells elsewhere that will turn on once the primary tumor is removed.

Speaker 2:

So in lung cancer you're more predisposed to this, and so we were worried that that would occur with him, despite the surgical intervention that he had, and so it was necessary at the stem cell level, meaning all of your brain cells, that cell, I'm going to be a hair cell, I'm going to be a skin cell, I'm going to be an eye cell Before it decides what it wants to do, it's called a stem cell.

Speaker 2:

That's the level where you intervene and take it down, because if it has the DNA that will trigger cancer, you want to take it down. Then, before it goes and launches somewhere else and says great, this is a great environment, I'm going to hide myself and now I'm going to grow. So that's what we're talking about after surgery what you need to do sometimes, depending on the type of cancer that you have. And it was important for him to do that so he could survive. And he didn't understand, because one profession says it's a one and done and another part of healthcare says, oh no, you need to add this layer to it. And they're not talking to each other, they're not talking to each other.

Speaker 2:

So it was very important in that sense to let him understand the ramifications of his decision. I may not have agreed with it and I may have wrung his arm a little bit, because I'm his wife and there's ramifications long-term for him. He needs to. He's a father, he needs to be there for his children and, coming from a place of fear that, okay, it's done, the sun is shining and the moon will come out and and and the birds are singing, no, no, no, there's just a little bit more for you to do so in that we got him on and so about three to six months after he finished taking the chemo, he agreed to do it. Three to six months later, I get this call from the insurance company.

Speaker 1:

I just can't believe. You just thank God that he had you, he chose well as far as a wife, and that you know you brought an expertise to the table that saved his life, and that you were able to even talk to the providers before they would listen to you, because that's a lot of times they don't. As you said, one doctor might say this, another doctor says that, hey, I'm the expert here, this is what we're going to do. But you had a voice at the table and I don't think a lot of people realize you do have a voice at the table, especially when it comes to your care, but you want it to be an intelligent voice. You want to understand what it is that you're doing or not doing.

Speaker 1:

You had even told me, in the case of your own daughter, that you were going through that. You then had to go all the way to St Jude like three, four states away, correct and to seek the care that was necessary for her to survive. Yes, and like I said, this cancer journey man, people just don't realize what it takes. You can either just say you know what, yep, I get it, let me prepare myself for this ultimate or I can fight. You decided to fight.

Speaker 2:

Yes.

Speaker 1:

Yeah, tell us more about what happened in that kid.

Speaker 2:

Oh my goodness. So she failed conventional treatment. I'm not even going to say she failed. Conventional treatment failed her. Remember, it wasn't geared for her, it wasn't tested on a girl, it wasn't tested on an African-American ever. And so we were rolling the dice. We could be part of the 80 to 90% that it will work on. We didn't know, or we could be that 10 to 20% that it didn't work. It failed us fast and furious, and we were. We were part of that 10 to 20%. It didn't work, and so everyone had an idea of what they wanted to do. Again, we can.

Speaker 2:

One of the surgeons wanted to debulk it, so they went and got to another specialty to be able to find the most least invasive way to do it right. Then you have your eye, the eye doctor, ophthalmologist, and neuro-ophthalmology at that, because we're talking about the nerves. And then you have radiation oncology and everyone is saying all the different things I can do it, it can be done, we could do it this way. But at the end of the day, you're looking at your loved one, your child, your husband. So you're looking at your loved one, your child, your husband, your spouse, your wife, your parent. You're looking at your loved one and saying, if I do any one of these things, who is going to be returned to me after it's all said and done? What harm? Who's coming back on the other side? And it was important to me that that spunky, feisty, young, little little young angel that I had in front of me was neurally intact and that was going to be able to walk, talk, see, speak, recognize me, recognize me. Because sometimes we could say, okay, we could take it down, but then if the person wakes up and they don't know who you are, they can't talk, they can't eat, they can't protect their airway to breathe, they have no control over body functions. You just turn around and say, what the hell did I do? Was this really in the best interest? Is there going to be enough time within their lifespan that we will be able to return function to them, for them to have a quality of life? And so for me, it was important for all of these different specialists to get together, and my husband was part of. Well, if it hurts, you cut it off, and I'm like you can't cut off your brainstems, love. That's not going to work. It's not going to work. So we need to sit down and walk this through.

Speaker 2:

So ultimately I brought all of them together at the table, and so the oncologist wanted her to go into hospice. The neurosurgeon and the specialist surgeon wanted to do debulking surgery. So whatever chemo we would propose or radiation would have a chance. The radiation oncologist said we can do this, but she's going to have a lot of deficits, meaning she's going to be harmed. But she's going to have a lot of deficits, meaning she's going to be harmed. She might have speech problems, memory problems, being able to process higher functioning like algebra or math. She might not be able to participate in school, or we might miss the mark and make her a non-functioning person in a bed, comatose. So all of these things were coming together. Person in a bed, comatose. So all of these things were coming together. And so it was very important for them to talk together and then come together and say what's the right plan. And ultimately the right plan was to go to St Jude.

Speaker 2:

And so at that point my husband had to come clean and say you know, I have cancer again and I have to go for surgery, but I'm not going to do it until you come back. And it's like oh well, we're supposed to leave next week. So wait a minute here. What do you mean? How long have you known and why didn't you tell me? And so it was.

Speaker 2:

You're already under enough stress. I don't even know how to tell a mom, let alone my wife, who's taking care of our child that has cancer, that I have cancer too, and I need you as a man. I can't do that as a man. I cannot do that as a man. I need to be able to take care of myself or solve this issue, and I couldn't, because I need you. But I would never make you choose between our child and me and I'm like well, that's what I'm doing now. Now it's at the last minute. So then it was getting everyone together and making a plan for him, and we have two other children at this time. This is further along. We have two other children. They're in their teens and they need parents, and so I'm not going to leave the older children with their dad, who's also battling cancer himself, so they had to come with me to travel out of state but our dad we're leaving dad behind.

Speaker 2:

Who are we not going to see again?

Speaker 1:

Right.

Speaker 2:

Who are we out of these two? Which two, which one are we not going to see again when we split and divide? Is it my husband not going to see his daughter again, or is it all my children not going to see their father again after we leave him? I mean, it's a diabolical decision to make and I firmly resolved in that moment that no one should ever. I don't care if you're a health care provider or not. I don't care if you understand the health care system. No one should have to choose between. Which family member am I going to take care? Those?

Speaker 1:

are tough decision. I mean, nobody will want that decision. You see that sometimes you see that in movies. Right, you say, oh, you know, is it going to be your wife or your child? And you know this is an impossible situation. Talk about high drama situation. The fact of the matter that they both are here, so you didn't have to, like you know, make that choice of you or like no, and then you're going to live with yourself after that You're going to have to live with yourself after that.

Speaker 2:

It's an impossible.

Speaker 1:

Thing.

Speaker 2:

It's an impossible thing. And that's where a lot of that guilt factor comes in. That's where a lot of that anger and resentment comes in, that survivor guilt. It's like I made the wrong decision. I am so mad at myself, I'm mad at the world, I'm mad at everybody, but, most important, I'm disappointed in myself that I couldn't do it all. And that is something you will never get over.

Speaker 2:

People will say okay, with time, the memory goes in your heart. That individual no, that individual was here. You gave birth to it, you married it, you lived a life together of events, of situations, hardships, of celebrations, and now that individual isn't there and you made a decision that either resulted in them not being there or resulted in a lot of harm. And what I say to people is you're given a toolbox, right? No physician has the right answer, which is something that drove my husband nuts. Right, because you believe that when you go into the health care system, they're going to have the answer. They're going to have that, that wonderful salve, that magic pill that's just going to take it away. Right, take a blood pressure, take a pill and see you later. I'll see you next month In cancer.

Speaker 2:

It's not like that at all and, as a healthcare provider, being in the cancer space from whatever specialty you're coming from, cancer is a whole different ball game. It's worse than chronic disease. But now with medical advances, you can treat it like a specialty and bring in all of the game players. It's sort of like armchair quarterbacking, but you're actually on the field and you're standing up and all these linebackers are coming at you and you really need to be able to navigate around the different players or say, ok, I'm going to partner with you, let me get on your back to get through. You know that tush push.

Speaker 2:

Yeah, there is going to be. Yeah, no, I'm going to pass it off to the kicker and go over you and go around. It. Off to the kicker and go over you and go around. And if you do and make those decisions right using the information that's given to you at the time, remember the only thing you have is what's in your toolbox. Now, if you're missing a wrench or you're missing a bolt, at the time that is detrimental to holding down that engine. You don't have it and you don't have the luxury of going back and saying let me go to AutoZone and go get it and come back and let's do a review. There's no replay, so you have to give yourself grace and space and say I made this decision, maybe right, it may be wrong, but at the end of the day it was the best decision with the tools and information you have in front of you.

Speaker 1:

At the time, at the time that's so important, Make peace with it.

Speaker 2:

That's it.

Speaker 1:

I want to break in for a minute because you're breaking barriers in cancer care and you often speak about the three fundamental barriers of oncology, which is lack of knowledge, lack of therapeutic access, the system navigation. Can you kind of break these down for our audience?

Speaker 2:

Yes, in any disease there's three things that will that, if they, the trifecta, comes together, you have more of a propensity to no longer be walking this earth. I'll just say it like that and that is knowledge. Knowledge is key. Are you even aware that you have a disease and are you aware of what is out there or where you need to go? Every hospital, whether it's a community hospital or a cancer hospital or a specialist hospital, they specialize in something. It might be cardiac. It's usually about three things, no more than three. It might be two, no more than three. So if it's heart disease and kidney and they may do a certain type of cancer, that's it. But if you don't have any of those things and you have a diagnosis like brain cancer, if they don't specialize in brain cancer, that's not the place for you to be. You really actually need to go elsewhere. But if you're not aware of that, you're just gonna drive down the street, turn left and go to the local hospital that's available for you because you're feeling bad and you need care. Okay, now you know what you have. Now it's time for you to find out where to go. Most people stop at that point and say okay, my healthcare provider has referred me to here and that's where I'm going to go. Well, if you're in rural America, that might be more than 200 miles away. How do you get there, how do you stay there and how do you make sure you have a place to come back to Right? So all of these factors, so there's knowledge right to right. So all of these factors, so there's knowledge, right.

Speaker 2:

If you aren't aware of what's there, you may not say. You may say no, I'm not going, I can't get there, I don't have, I have no way, I can't me myself, or of such limited resources, it's not going to happen. So there's knowledge You're not aware. First, check on, I might be six feet under. Second is access.

Speaker 2:

Were you supposed to turn left or right at the stop sign at the end of your street? That can make a difference. You might turn right and travel one mile, but because they have a formulary of certain therapeutics that are available to you and that's it but the one to you and that's it, but the one that you needed is the targeted DNA. So you should have turned left and traveled 300 miles in the opposite direction because you didn't have access to that and you only have access to what that community hospital or what that healthcare center is or clinic is available to you. They may say radiation. They may say, okay, we're just gonna just give you chemo, but that's not what you need. Remember, you need that targeted therapy 300 miles away.

Speaker 1:

And yet getting there.

Speaker 2:

that's step two of you being six feet under Think about it okay.

Speaker 2:

And the third one is healthcare systems navigation. So being understanding what the difference between a medical oncologist is versus a clinical research oncologist, understanding the difference between a health care clinic versus a community hospital, versus a cancer treatment center, can actually be the difference between life or death for you navigate to get yourself to there or have the doctors within each organization talking to each other so that they're aware of what's available out there. Again, every hospital has their own formulary of medications and therapeutics that they're going to give. It's based on whatever procurement contract they've made with whatever entity out there, whatever PBM or pharmaceutical supply company out there. That's all that's offered because they've made alliances with drug companies and that's all they're going to offer too. So it's very distinct. And the other thing is what does your zip code pay for? Zip code and your local municipality will pay for what your insurance offerings are available to you in your local municipality and your state.

Speaker 2:

As you mentioned, I had to go out of state to receive care because it wasn't available to me. But had I not known that there was this other entity called St Jude? I'm just using one of them. There's many children's hospitals out there. St Jude happens to be the largest clinical children's research hospital for cancer. But had they not been aware of that, or if I didn't have a diagnosis that up for my child that St Jude could take care of, I'm not going to be afforded to go there to have the paperwork to travel there. So again, that's the third foot. Now you will be placed in hospice or palliative care and then hospice and just be managed until you pass away.

Speaker 1:

You've got to be aware and that is an avoidable death.

Speaker 2:

Yes, it's an avoidable death.

Speaker 1:

If you have the things that you have. Any one of those things Right.

Speaker 2:

Yes, if you change any one of that triangle, any one side of that triangle, you will not die.

Speaker 1:

Well, that's important. Now we need to understand your business, you know with the Orchard Healthcare Solutions, and how you help people. I want to truly understand, you know, the service you provide because, fortunately, people will be on this journey and they need, you know, an advocate like yourself, a real warrior that's out there that can be of assistance. So tell us a little bit more about your business.

Speaker 2:

So my business, we do three things. After learning that there wasn't a lot of therapeutic options out there for my daughter, I said there's got to be more than this. There's got to be a better answer and a better way than traveling. You know three states and ultimately, nine states. We went. Got to be a better answer and a better way than traveling. You know three states and ultimately nine states. We went up to another facility in New York and that started her on her train to into survivorship, where she is today permanent remission. And so people need to know and again, your zip code, your municipality, your state and the health policy that you are will dictate what's afforded to you and the facilities formula. And so I said there's got to be a better way to look at this and we need to have patients and their providers need to know where everything is in one place. You shouldn't need a dissertation, a doctorate's degree, a law degree and a headache trying to go to clinicaltrialsgov. Okay.

Speaker 1:

Anyone went?

Speaker 2:

there. That's what's going to happen to you and truly you're still not going to get an answer, because they do it one step down to make sure they remove accountability and liability just in case it doesn't work for you. That's how it's designed, but at least it gives the medical provider the idea of what's available. But what happens with patients is they see a drug and they hold their hat on that and say, if I get that tangible thing, that shiny object that will save my life and that might not be the case the provider is going to look at the details of that and say this isn't for you. As a matter of fact, you have brain cancer and this is for liver cancer, so it doesn't even match, so you can't have it. And so when the patient is told, or their family, that they've hung their hat on this particular drug because they have this gene or this stuff and they can't have it, you've given them despair and you've taken away their hope. Have it. You've given them despair and you've taken away their hope. So we built a library of all therapeutics, from soup to nuts off your label use to conventional therapy and everything in between, so that you can find a solution or receive a list of options in one place and that's the Prostate Cancer Treatment Library, and that allows you to take that list, crafted based on what your disease state is or your diagnosis is and pathology report for your cancer, and we give you a list. And it may not be in your state, it may be clear across the country, but at least you know that that is out there and you can have a conversation with your doctor. We do one step further to help you as a liaison and a navigator health system navigator. We're going to ask you how do you want to be treated? Are you? Is it that you've had enough and you want to enjoy the rest of your time with your family? Okay, fine, we'll have a conversation with you and your doctor. And you want to enjoy the rest of your time with your family? Okay, fine, we'll have a conversation with you and your doctor and make sure that you're comfortable, provide services and push in.

Speaker 2:

If it's not available to you in your local community, we'll provide community partners to make sure that it's available for you. And if you have young children, we'll make sure that your surviving partner or spouse doesn't have to have the burden of paying for a four year degree College will make sure that we partner with you and have that taken care of so at least your, your family members, will be able to live on without you, without that financial burden. But if you want to really go for the gusto and you're going to do this, we'll provide sustainable resources, not a one and done. We're talking about for the whole duration that you are on. If it's chemo and you're not needle-averse and you can't swallow a pill, we'll give you chemo, nanoparticle radiation. We'll find what works for you that you want to do. If you are, if you say no, I don't want those things, I just would rather I can swallow, I'd rather take a pill. So we'll give you a therapy or target it that way and foster that conversation with your doctor to say this person's needle verseed, they really don't want to go through this. Here are the other things next best treatment, next level treatment or secondary tertiary that we know that works will help you get the gene therapy testing that you need.

Speaker 2:

In the case of my daughter, she didn't have a gene, she didn't have the DNA. We didn't even know what it was. It was this pesky little receptor that we suddenly found, and it was the FGFR receptor, but she didn't have the first, the second, she had all three of them, and so she had cancer from the hair on her head to the soles on her feet. At the time when she was four, medical science did not know that, so there was never going to be any therapeutic that was going to help her, other than radiation. But radiating a whole body on a child would kill them.

Speaker 2:

So we have to wait for medical technology to catch up. So she was the very first African-American female number one to do the FGFR gene therapy receptor therapy and it worked. It took it down everywhere else and allowed us to just focus on the tumor in her brain, and it took it down to the point that it allowed us for radiation therapy nanotechnology. I'm not sure if you heard about Hedaya Green. We were waiting for her science to step up to save her, but at the time when I had to make a decision to say it's time for radiation, she was still working on that then. But I know that she's made a substantial breakthrough now. So this is why I'm talking about her.

Speaker 2:

You need to find out what she's up to, because she really can do something to save you. But in the case of my daughter it was proton beam radiation and there's many different types of cancer of radiation, and so basically it is the speed of that radiation atom that's coming at you, and how fast you can either speed it up or slow it down is to how fast it either goes all the way through the body or just stops in the center of your tumor. And when you're talking about the brain, you need it to stop right in the center and be very exact, because if it goes too far you could damage something very badly Sure.

Speaker 1:

I can imagine. That.

Speaker 2:

And so we had to wait for medical technology to catch up to here. So we always knew that we would never treat her whole cancer type. But if we hit it high enough on the DNA chain we could halt the progression or at least put it to sleep for a little while, that it would work long enough. And so that's what St Jude's offered. You know, 50 percent chance at another two years. If you see how medical advances and technology happens today, six months from now, you could have a complete different trajectory in your cancer life. So two years is a lifetime to these children, to these adults, and so that's what we did. 50% chance of survival in the experimental and humanitarian realm was better odds than taking a conventional treatment, because we only had 10 to 20% chance of survival and it could have killed her. And so when you're asking people to think about that, you're really going to experiment on your kid. Um, put your big toe in that parent's shoe before you open your mouth yeah, yeah.

Speaker 1:

You gotta really what you said there. You know, you gotta to make some very, very tough decisions and you've got to look at everything on the table right in front of you and, like you said, the linebackers are still coming and you've got to make a decision and move it forward. This episode has been wonderful. What you have shared with us is life-changing. First of all, I'm going to thank you for being a loyal fan of the Follow Brand Podcast.

Speaker 2:

Shameless plug. You need to watch his episode on AI. I'm a techie and I'm a nerd. Shameless plug, watch it, watch it, watch it.

Speaker 1:

And thank you for watching that, and I want to tell everyone to watch all the episodes of follow brand at five star BDM dot com. But tell us how to get to your Web site. I know someone's listening to you right now Like, oh my God, I got to get in touch with her, I've got to have a conversation with her. I'm in a situation that I think she can be of some service. So what is the best way?

Speaker 2:

Right. So we are Orchid as the flower, orchid as the flower, healthcare and then solutions with an S OrchidHealthcareSolutionscom. And you can find us on all social media. You can find us on Google. You can either Google my name, rochelle Prosser, or you can Google Orchid Healthcare Solutions, and we will come back. No, we're not the orthopedic company. No, we are not the testicular cancer company either, because they all have the name Orchid. So I'm going to just say that there, but it's Orchid Healthcare Solution. Orchid is a flower, solutions with the ass all together.

Speaker 1:

Well, I want to thank you again for sharing your story, the story of your, your family, your husband and your daughter. I wish them nothing but but love and a good life as we move forward. You have been wonderful. Thank you again for being on the show.

Speaker 2:

It's my pleasure and and I'm here, you can also send me an email, orchidhcs at gmailcom. So it's a pleasure to meet your audience and thank you for this opportunity.

Speaker 1:

Thank you.