Episode 320 Cord Blood Banking with Diane from Cryo-Cell
The VBAC Link - Podcast tekijän mukaan Meagan Heaton
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“With cord blood, hope really knows no bounds.”Diane Paradise is living proof that cord blood transplants cure the incurable. Diagnosed with a rare form of Hodgkin Lymphoma at only 24 years old, Diane fought an extremely hard fight as it returned five more times before age 42. It had now become stage 4B and metastasized to her bone marrow. With no other options, Diane was given hope through a clinical trial. She eradicated all of her sick marrow through aggressive chemotherapy and then was given a new blood type through a cord blood transplant from two different donors. 24 days later, after almost two decades, Diane was cured. She has just celebrated her 10th year of being cancer-free and has committed her life’s work to spreading education about the hope behind what banking your baby’s cord blood after birth can do for your family. Meagan and Diane talk about what cord blood banking is, how to enroll, how much it costs, and where you can find all of the information you need about this lifesaving procedure. July is Cord Blood Awareness Month and Cryo-Cell is offering a free seminar on Wednesday, July 31 2024 at 1:00 PM EST. Register at https://lp.cryo-cell.com/fuller-paradise-seminar. Cryo-Cell's WebsiteNeeded WebsiteHow to VBAC: The Ultimate Prep Course for ParentsFull Transcript under Episode Details Meagan: Hey, hey everybody. Today’s episode is a little different from the norm. We are actually going to be talking about cord blood banking. We have my friend Diane on the podcast. Hello, Diane. Diane: Hello, hello. Meagan: It’s so good to see you again. She and I met for the first time actually in January of this year, 2024 at a doula retreat and she was there speaking at this retreat about cord blood banking. Cord blood banking for me wasn’t actually a new topic because I had spoken to another company a little while ago about it but there was something extra unique and extra special about Diane and Cryo-Cell is the company that she works with that I was like, We need to share more about this. First of all, her story which I’m sure she’ll share a little bit more about, is incredible. So today, we actually normally would do a review, but I really want to soak up the time with Diane because I know her time is so precious. After the intro, we are going to dive right into what this is even about. Meagan: Okay, you guys. Like I said, we have our friend Diane. Diane is a 29-year, six-time cancer survivor. After fighting a rare and uncurable Hodgkin Lymphoma for nearly two decades, a cord stem cell transplant saved her life. You guys, when she was sharing her story at this retreat, it was so insanely amazing and heartbreaking at the same time. So many things that she’s been through. It says, “This past December, she celebrated her 10th transplant re-birthday. For many years, Diane was a survivorship educator helping women living with cancer and chronic illness. Today she is spending time on the side of the cure educating expectant parents, birth workers, and obstetricians on providing the potential of cord blood for Cryo-Cell International, the world’s first cord blood bank.” Diane, welcome to the show. Seriously, I am so excited for you to talk more about this with our listeners because we do have expectant parents. We do have OB/GYNs and midwives and birth workers and this really is a unique thing and it’s something that is so powerful. I know because I’ve heard your story so I’m just going to turn the time over to you. Diane: Thank you so much, Meagan. First of all, I know your audience is varied but for the expectant moms out there, I just want to say congratulations. I can only imagine the mix of emotions they are feeling right now and one of them is probably a profound sense of hope and anticipation. So for me, hope was two units of cord blood stem cells hanging on an IV pole on December 3, 2013. So let me step back a bit just so everybody can understand. I was diagnosed at 24 years old with that rare, incurable form of Hodgkin Lymphoma. It was back in 1994. I think about that. Wow, I’m aging and I love it. The alternative wasn’t great. Meagan: But you’re still so young. Diane: I am. I am.I was told that this was incurable and that it would keep coming back. It would be more and more aggressive. The chemo would become less effective over time and the intervals between when it came back would get shorter. That’s exactly what happened. It came back at ages 31, 35, and 38. It became really aggressive at age 40. What I mean by that is that it went from stage 2B to 4B. It had metastasized into my bone marrow. I couldn’t walk. I couldn’t drive. I couldn’t take care of myself. I couldn’t even take care of myself alone. Thankfully, I went back into remission around the spring of 41, but it came back a year later at age 42. I spent about a year and a half going through different types of chemotherapy trying to get it back into remission and that’s when the idea of a transplant came up because quite honestly, it was my last chance. It was my last hope. It was in my bone marrow. It was time to either going to heal or it wasn’t. So I ended up in a major hospital and we originally had started looking at bone marrow transplant. We were looking at what they call a half-match and they were going to use my sibling. Now, my siblings aren’t ideal donors. They are older than I am and the ideal donor is 18-35. At that point, I was 43 so I was a year and a half into it. I was 43 so that tells you how much out of the ideal age range my siblings were. Then they called me and said, “Oh hey, we have a clinical trial going where we are going to be comparing the side effects of cord blood versus bone marrow and the effectiveness.” I was like, “I don’t understand. What’s the difference?” They said, “Bone marrow is educated stem cells. They are educated stem cells. They’ve been exposed so any virus that your donor has or has had, when you receive that donation as your own stem cells, you will have been exposed to that whereas cord blood which is taken after the umbilical cord is clamped and cut is pure and uneducated. It has a higher rate of engraftment. It has a lower rate of graft versus host disease which is where your body thinks the stem cells are the enemy. Then it really doesn’t have much of a chance of a virus being there, a latent virus.” I went ahead and said, “Yes. Hello, I’ll take that pure, uneducated. I’ve had a failing immune system for 19 years at this point. Yes. I’ll take that clean, clear, beautiful, pristine cord blood stem cells.” So I went to the hospital. It was around November and I had to do a lot of the pretesting. I went through six days of really intense chemotherapy and one day of radiation to eradicate my own bone marrow, the sick bone marrow. Then I received on December 3, 2013, two donor stem cells. One was from Germany and one was from Michigan. About, it was a few weeks later. It was a few weeks later when they pull a blood test to see where are you on the engraftment. Is there a little bit of one of the donors? And I want to step back. The reason that there were two donors– if I were a child, I would only need one donor, but I’m an adult. That’s a lot of bone marrow that has to go in and graft and replicate in order to ingraft for an adult basically. That’s why I had two of them. It kind of creates a survivor of the fittest. It creates an environment for faster cell engraftment. So then I had the blood test done 24 days later. After 19 years of battling incurable cancer, I was 100% grafted to the Michigan baby in just those 24 days. Meagan: Isn’t that incredible? Diane: It really is. I was cured by cord blood in 24 days. Meagan: 24 days after years and years. Diane: Almost two decades. Meagan: Yes. Diane: Yes. So think about this. I want you to really think about this. What is often tossed as medical waste is what saved my life. Meagan: I encapsulate placentas, the actual placenta itself and there will be so many times where people are like, “Why would you do that? That is garbage.” They literally say that. They think that. Placentas are garbage, but look at what it’s done. It saved your life. Diane: Well, the cord blood did, yes. Meagan: The cord blood which I understand they can throw the placenta away after they get the cord blood out. Is that correct? Diane: So what we do with cord blood is that after it is clamped and cut, they actually insert a needle and draw the rest of the cord blood out because the placenta continues to pulse as if the baby is there for up to 30 minutes. That’s the stem cells that we are collecting. Now, if we were to collect the cord tissue that’s after the placenta has been delivered, we will cut and collect the cord tissue if that’s something that the parent is interested in, yes. Meagan: Gotcha. Diane: Yes. So I ended up with a new blood type, just so you know. Meagan: Oh yes, I remember you saying that. Diane: Remember? I remember you liked that comment a lot when we talked about it. Meagan: A whole new blood type. The fascinating thing is even your immune system we talked about how it started over. Diane: Yeah, I had new baby immunizations. I’m 43 years old and 44 years old and getting immunizations as if I never had them. Meagan: Yeah. Diane: I just find that so fascinating. Meagan: It is so fascinating. Diane: So fascinating. Meagan: It is. Okay, so cord blood isn’t being used a ton. Diane: It is. It is. Meagan: Sorry, it is being used a ton. Diane: A lot more than people know, a lot more than people know. Meagan: This is my thing is that it’s not being talked about. Diane: Bingo, ding ding ding. There you go. Meagan: Let’s go into that. Diane: Yes. It’s funny because even I found a transplant video from the day of the transplant where I did a vlog to my family and friends and I talked to them about these two women who selflessly donated their cord blood and how it would potentially save my life or potentially could save my life. I was like, “I don’t even know how they do that.” The video was really funny. What I realized was once I got done with it, I went down this rabbit hole of, I need to know more. Once it cured me, I wanted to know everything. Meagan: I’m sure. Diane: What I found was there was a lot of information out there and it’s being used in a lot of ways but there’s also misinformation. You had mentioned that I was a survivorship coach leading up to this and I was until I moved to Tennessee and I just decided I didn’t want to continue that and I wanted to be on the side of the cure and for me, that was cord blood. Fast forward to today, I am working for Cryo-Cell International and now, I can recognize and help people with the misinformation and myths surrounding cord blood banking. You talked about it not being used. That is simply not true. We just don’t know about it. It is actually an FDA-approved treatment for nearly 80 different diseases including blood cancers, and anemias– we have a whole list on our website but there have been 50,000 transplants worldwide and there are 175 active clinical trials for things like autism, multiple sclerosis, cerebral palsy, adult stroke, Alzheimer’s, dementia, Type 1 diabetes, Parkinson’s– because what it is, cord blood is rich. I don’t want this to be a big science class lesson, but it’s good for people to understand because we have two different things here. We have cord blood and we have cord tissue. Cord blood is what is called a metapoetic stem cell and that is what creates all of the cells in your blood and immune system which is why it was able to replace my stem cells with my donor’s. They are a perfect match for the baby. They are a 50-75% chance of a match for a sibling and there are a lot of sibling transplants and an acceptable match for parents. Now, the other side of it, the cord tissue, is a different type of stem cell which is the mesenchymal stem cell. They do something a little bit different. That’s in the Wharton’s Jelly so they are capable of becoming structural and connective tissues like bone, fat, and cartilage, and they can modify immune functions to help treat autoimmune diseases such as arthritis and diabetes. I recently listened to a doctor out of UC Davis. Her name is Dr. Farmer and she used the stem cells from cord tissue on the spine of a baby with spina bifida in utero. She did the surgery in utero and closed up the opening where the spinal cord was exposed and the baby came out wiggling their toes and moving legs. Pretty amazing. Meagan: Wow. Diane: Yeah. And there’s a lot being done with this. There are over 100 active clinical trials for ALS, rheumatoid arthritis, lupus, Type 1 diabetes again, MS, Crohn’s, and spinal cord injuries– I mean, there are just so many active clinical trials for different diseases out there. It is being used. Cord blood is being used and cord tissue is in active clinical trials as well. Meagan: Wow. So especially for our pregnant mamas and expectant parents or even birth workers wanting to share this information with their clients, what is the process to do this? We know a lot of the benefits right here. We just went through so many of these benefits. What is the process of getting started? What I think is pretty cool about Cryo-Cell is that they can send the kit to you. I saw the kit you have brought as an example. Can you walk listeners through what it’s like in case they are interested in doing it both physically on what the steps are and even financially if we can talk a little bit about that? Diane: We can.Meagan: Then storage-wise, how long? There are so many questions. Can we talk about that process? Diane: Absolutely. Absolutely. Okay. I’m trying to think of where we should start with this. There are so many questions you just asked me there. Meagan: Sorry, I just threw a lot at you. Diane: Like, hmm. Where do I begin? Another myth– so if somebody wants to save for themselves, one of the myths we hear is that it’s expensive. 10 years ago it was. Now, it’s more affordable and Cryo-Cell has, first of all, we have the most amazing kit. You mentioned it. I will repeat that. We have a kit that has a handle on it. It comes to you. You open it up and it has everything right there, the forms for you to fill out, the information for you to give the delivery physician. All of that is right there. When you enroll, you get the collection kit, the shipping, the medical courier, the processing, and testing because after processing, once it arrives back to us, it has to be processed and tested as well as the first year is storage. That price because it has that initial fee in it ranges from $800-2000 whether it is cord blood or cord blood and cord tissue. However, we have a risk-free enrollment so nothing is charged at the time that you enroll. If you decide not to collect, call us and ship the kit back within two weeks and it will be no cost to the expectant parent. Then after that, if they do enroll and we get all of it and it’s processed, the annual storage fee runs between $185 and $370. It’s $185 for cord blood and then $370 for cord blood and cord tissue. We offer flexed payment plans. We offer monthly specials. There are discounts for returning clients and families with multiple children. We have military discounts for retired and active and also medical professionals. If your friends and family want to purchase gift certificates for you, they can do that as well. We have that ability. The thing that I like the most is that we have a refer-a-friend program. If you are having a baby, your friends are probably having them too. If you refer your friend to us and they become a client, you get a free year of storage and you can get unlimited years of storage using that program. I do want to just take a quick step back with the kit because our kit is like I said, it’s special. It has everything in it that you need. We have these– I’m trying to think of what they are called right now. Vacuum packs, they’re not vacuum packs. They’re insulated packs because it has to stay at a certain temperature. If it’s too hot out, those packs will cool the collection down as it’s being shipped. If it's too cold out, it will warm them up. It’s pretty special. It is definitely a kit and then it also protects up to 30 times longer because of that. Meagan: Yeah. Which I think is a really unique thing about their kit for sure. Diane: Yes. Yes. Meagan: So they’ve got it no matter what part of the world or what time your baby is born. If it’s in wintertime or summertime– Diane: Yes. It’s taken care of. Meagan: It’s taken care of. You can rest assured. Okay, so they can enroll to be a member. If you do and decide to donate, it gets sent. There’s an initial fee but then there is an annual fee which you can easily get for free by referring friends. We talked about it being shared and it can help siblings and things like that. It is there if you need it. For your instance, is it possible to be a match to somebody then does someone call? How does that work? Diane: No, so my donations came from a public bank. Mine were unrelated donors. Meagan: Okay, because that was a clinical thing too, right? Was yours a trial? Diane: It was a trial, but they already knew that cord blood transplants worked. They were just trying to compare the side effects of each– which has lower, graft versus host. Meagan: So it was just being donated from a bank. Diane: Yes, from a public bank. If someone can’t afford to private bank for their family, there is the option to donate like what saved me. Meagan: That’s where I was getting at. This is perfect. Diane: That is free and that is anonymous. You can give someone a chance at life whether it be through a transplant like I received or through research. Cryo-Cell has public donation sites in Florida, Arizona, and California. If there isn’t one in someone’s area who is listening, I’m sure you’ll put out my contact information and they can contact me directly and I may be able to help them find a way for them to donate. Now, there’s a couple of things that I want people to understand about the public donation option. If you can’t afford to private bank, this is a great option because the only other option is for it to be medical waste. Let these be the only two options for you and that’s why I’m like, contact me. I might be able to help. I want you to understand that I did have two donors. Only one of them was from the United States. They had to go out of the States to Germany to find me a second match. Whether it’s bone marrow or cord blood, it isn’t easy to find any match when it comes to that type of transplant. If there is a family history of any of the diseases that I mentioned earlier, I really urge people to consider private banking to safeguard your family’s health because when you donate, sometimes people think, Well, I’ll just donate and it’ll be there if I need it. Well, 8 out of 10 units that are donated go to medical waste anyway because of family health history or low collection volume and they are being used daily. The ones that are there are being used daily so most likely, you won’t find it if you need the cord blood for your family. Meagan: Right and your family is more likely to be a perfect match, right? Diane: With the matches, it is a perfect match for the baby. It’s a 50-75% acceptable match for a sibling and an acceptable match for the parents as well. Meagan: Right, yeah. So pretty awesome chances. Diane: Yes. Yes. Because of the audience, I want everybody to understand because this is probably the #1 myth that I get from parents that I hear a lot. That is that, Well, I want to delay cord clamp so I can’t save the cord blood. I want you to know that you can. 10 years ago, that was probably true. Today, if they follow the ACOG recommendation of a 30-60-second delay, you can delay and save. It may yield a smaller collection so basically what that means is it’s really crucial to select the best processing method. For instance, our PrepaCyte processing method is more advanced. It provides a cleaner yield and that is what makes it beneficial for delayed cord clamping and saving the cord blood. So if that is truly what they want to do, here’s the other thing to know. Remember how I said that you have a risk-free enrollment if you enroll then decide not to collect? If you enroll and you collect and it gets to us and it has suboptimal results, we pick up the phone and call you and talk to you about it. You can decide one way or another if you want to move forward with banking that cord blood. Meagan: Continue. Diane: Yes. And you did ask about how long does this stuff last? Cord blood is living medicine. It is collected. It is processed and it is stored in this amazing five-compartment chamber so you can get multiple uses out of it if maybe it’s a treatment protocol and it’s not one big transplant necessarily which I think is going to become more and more the way of doing things with cord blood. That’s my personal opinion. That’s not necessarily the opinion of Cryo-Cell, but I do see that with all of the reading that I’ve done. Did I answer all of those questions you threw at me? I’m not sure, but I tried. Meagan: Yes, yes. I think you did. You nailed it. Diane: Yes. Meagan: Yes. Yes. Okay, so obviously you chose to work for Cryo-Cell for a reason and you’re telling us all of the things about why but is there anything else that you are like, this is literally why I choose Cryo-Cell and why I suggest them? Diane: Yes. When I was doing all of my research, I looked into all of the cord blood banks, but for me, because I was cured by cord blood. This was why I am still standing here. I wanted to work for a company who did more than just banked cord blood. So when I went looking for that and I found Cryo-Cell, I realized that they focus on cord blood education and also cord blood advancement. They are embedded in every facet of the cord blood industry. They have private which is also called family banking. They have public donation sites. They are always seeking out the best technology for our kids and for our storage. I mentioned those temperature packs. I mentioned the five-chamber storage bag and then our premium processing, the PrepaCyte. So we are the world’s first cord blood bank, but we don’t ever rest on our laurels. Thank you. There’s the word. They never rest on their laurels, so to speak. Why do I keep trying to say that word? That’s hilarious. They are constantly trying to advance research. They are advancing research. In 2021, Cryo-Cell entered into an exclusive license agreement with Duke University and what that does is it grants us the right to propriety processes and regulatory data related to cord blood and cord tissue development at Duke. This year, I love this. This year, we are opening our first infusion clinic where it will be a site for future clinical trials investigating cerebral palsy, autism, and other neurological conditions. This is what I mean. We don’t just collect the cord blood and cryo-preserve it. We are constantly looking for how that can be used. How can it be used to protect the families who have trusted us with their baby’s cord blood? And not just us, but they’ve trusted us and we want to do what’s right for them. Cord blood is all we do. We aren’t part of a larger business model and that’s what makes our quality and our level of customer service unmatched. I knew Cryo-Cell was who I wanted to work for and I’ll be honest with you. The story behind how this all happened was honestly the stars aligning and I happened to be in the same room with someone who worked there. I had a conversation and a few months later, this is where I ended up. I couldn’t be happier. This company is– Meagan: Life-changing, literally. Diane: Yes. Life saving. Meagan: Lifesaving, yeah. Okay, so tell everybody where they can enroll and find more information because on the website, there’s a lot of really great information. There’s more on why, pricing, they go into the cord tissue. They talk about private versus public so all of the things that you’ve been touching on. They’ve got all of these things, a Q&A. There is a really, really great amount of information. Where can they find you? Where can they find the website? How can they enroll and all of the things? Diane: If they want to know more or are ready to enroll, they can go to our website which is cryo-cell.com and they can either chat with one of our incredible cord blood educators. They can click to enroll. Like you said, everything that they are curious about is there. If they want to reach out to me personally, I have an Instagram account for Cryo-Cell which is called @curedbycordblood. I have all of my contact information there. Meagan: Okay. I’m going to write that down right now so we can make sure to have it in the show notes. You guys, it’s super easy in case you forget anything. Just scroll in the show notes. Click the link and you can go read more about how you can definitely start cord blood banking for yourself or like she said, even donate to the public. Diane: Yes. Yes, or for research. Can I just end with one thing for these expectant parents? Meagan: Yes, of course. Diane: Banking cord blood is a once in your baby’s lifetime opportunity. You don’t want to miss it. If you have questions, call us. When I tell you we have the greatest educators in the industry, I mean it. Every bit of it, I mean it. They can answer all of your questions. All I ask is that no matter what you decide, please don’t let it go to medical waste because, with cord blood, hope really knows no bounds. Meagan: Thank you so stinking much for joining us today and sharing this seriously invaluable information. It is so important and it can really benefit so many people. So thank you so much. Diane: Thank you for having me. ClosingWould you like to be a guest on the podcast? 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