“Annietober365 and the Gift of Life” – with Jodi Eisner

In this Healthful Woman Podcast episode, Dr. Nathan Fox speaks with listener Jodi about her daughter, Annie. They discuss Annie’s glowing personality, her leukemia diagnosis at 17 years old, her subsequent cancer fight, and sadly, her passing away last year. They also discuss the Annietober365 Foundation, which was created in Annie’s memory.

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Dr. Fox: Welcome to today’s episode of Healthful Woman, a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OB-GYN and maternal fetal medicine specialist practicing in New York City. At Healthful Woman, I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness. Jodi, thank you for coming in and coming on the podcast. It’s wonderful to meet you in person and I’m just really happy you’re here.

Jodi: I’m so happy to be here and I’m glad we could make this work out.

Dr. Fox: Absolutely. So we’re primarily here to talk about your daughter, Annie, and what you’re doing now subsequent to her passing last year. So I just have to tell you that we’re meeting for the first time. I know some members of your family, we have friends in common, but we’re meeting, so I never had the pleasure of meeting your daughter. But I have spoken to you about her and I’ve spoken to friends about her and I’ve read about her and I’ve learned about her. And I feel like I know her and she’s amazing and wonderful. And I miss her and I never met her. And so I know it’s hard to talk about this because obviously you lost a child and she was such a light in this world and for your family. But I do think that us talking about her obviously is an honor to her memory. And obviously what you’re doing for her memory is going to have her live on permanently, obviously. So I want to say at the front because this is going to be obviously very moving for you, but it’s also for me. I’m not just someone interviewing you. I really feel connected here. So tell me about Annie.

Jodi: She was larger than life. If you knew Annie, sorry, she was fun. She was funny. Lots of times when people talk about Annie or you see things about Annie, it always talks about sparkle. Even her bat mitzvah invitation invited you to join us to celebrate the sparkle and spirit of our daughter. That was her. She exuded sparkle. Often it was from actual glitter that she used that was banned in our house after what we refer to as the “glincident” happened. She wore a lot of sparkle, but just her personality was sparkle. She had an infectious laugh. She had a very sophisticated sense of humor for a young girl, but she got sarcasm and snark and she had all of that. But she had a heart so big and just she could hear music in her head. She danced through life literally and figuratively.

Dr. Fox: She was a dancer, right?

Jodi: She was. She danced for… She wanted that 15-year trophy from Miss Michelle’s dance studio so badly. Every year when we hit the 5-year, the 10-year, my husband, my father would be like, “Look, if you want the trophy, we’ll buy you the trophy. We’ll buy you a trophy. Do we have to sit through another recital?” But she loved it. She loved dancing and she just, everything she did, she did it with her whole self.

Dr. Fox: What kind of things did she like to do, let’s start as a young child, other than dance?

Jodi: She loved to bake and when she was nine years old, she and I started baking these chocolate chip cookies and then she decided she was going to have a cookie sale to raise money for kids with cancer. And we were involved in Cycle for Survival and we were doing things and she started doing it and she raised $350 that first year and we have continued it on. She raised tens of thousands of dollars selling it. She used to say she was curing cancer one cookie at a time and we’ve continued doing that in her memory.

She loved pop culture, anything having to do with pop culture. Every TV show, she was a frequent caller, even though she was a little too young into “Watch What Happens Live” with Andy Cohen. She was Annie from New Jersey or Annie E was her other pseudonym that she’d use. She listened to every podcast. She read celebrity memoirs. She read memoirs. She was a voracious reader and she read everything from chic-lit to memoirs to biographies of titans of industry. She always had a book on her Kindle and she was always reading someplace.

She loved beauty and fashion and makeup. She might have been six, seven years old, she would say, “You know, mom, I heard this commercial for this stuff you should use that helps with fine lines and wrinkles. Have you thought about buying this?” She paid attention to all of that and she collected people. She had good friends. Most of her good friends are her friends from preschool on. She went to camp with girls who are like her sisters and some of them went to college with her and her friends. You know, they weren’t new friends. They were long time friends.

Dr. Fox: How did she get interested in raising money for cancer, which is obviously a sad irony, but how did how did that happen even?

Jodi: The irony is when you hear this story, Cycle for Survival was founded by a woman named Jen Goodman Linn. Jen grew up in Livingston like we live and our town has kind of adopted it as a philanthropy. Just so many people are involved because they knew her family. And in I believe it was 2011, my older daughter, Lainey, one of her good friends, was diagnosed with osteosarcoma and her parents went to a local Cycle for Survival event and they came back completely motivated and moved by it and said, “Next year, we want to get everybody we know involved.” So the next year my husband and I joined to be on their team. Lainey was on a teen ride and our whole community was involved. And that’s when Annie said, “I want to be involved.” And she had her first cookie sale.

During the time where we were helping plan that event, just a coincidence one afternoon, Annie happened to be sitting on the floor helping to pack the swag bags that we were giving out. And she was next to Jen’s mom and they introduced themselves and the two of them became fast friends. And Jen had passed away the summer before and the two of them started talking and there was just this connection instantly between them. And over the years they would come and support Annie’s cookie sale. Our friend, we became friendly with them. And when it came time for Annie’s bat mitzvah, she wound up writing her Dvar Torah, it was about Abraham, about the death of Sarah, about how the righteous live on after their death and Annie related it back to Jen. And what’s amazing is that I actually read that in my eulogy of Annie, the words that she said were so true, that the truly righteous, that good deeds live on beyond their death.

So that’s how she became involved. And she was so committed and we had what we called cookie season every year. And in January we would start baking and she and I did it ourselves and she really did most of it. I helped with the marketing and packaging and the shopping and the paying for the ingredients, but we baked thousands of cookies every year and people came and we were selling them at that point for a dollar each. And people started to know Annie’s cookies. So when she got sick, she was diagnosed on January 1st, 2020 with acute myeloid leukemia. And it was the start of cookie season and our friends are like, “We’re not going to let cookie season go.” And our friends got together and they started selling the cookies.

And we have a dear friend who owns an appliance showroom and he lets us use their kitchens where they have multiple ovens all at once and we have cookie day and we started doing it. And then during the pandemic, you know, we couldn’t really sell cookies, but we started selling virtual cookies and people would send us a donation and every month Annie and I brought cookies to the doctors and nurses at Memorial Sloan Kettering. And I continue to do that pretty much every month now.

Dr. Fox: Wow. But a dollar a cookie, with the box you brought me today, that’s a pretty expensive box then.

Jodi: That’s two dozen cookies. Our prices have gone up a little bit. Ingredients have gone up. I believe this year the cookies are going to be five cookies, $10.

Dr. Fox: Wow. Well, now what was it like for your family when she got diagnosed? I mean, devastating, obviously, but what was it like practically?

Jodi: It came out of left field. You know, she had not been feeling well. I said, “It’s because you don’t eat enough vegetables,” things like that. She woke up the morning of January 1st, 2020 with a 103-degree fever. I said, “Oh, it’s the flu.” Obviously, that’s what people get in January. I always say there was an angel on my path that day. I took her to the local Summit Medical Group Urgent Care, and Dr. Corey Smith was on that day, was the head of their urgent care. And he took one look at her and he said, “I don’t like how she looks and I don’t have the ability to do lab stat here today on the holiday. I want to send you over across the street to St. Barnabas.” And when we got there, it was a zoo. It was a holiday. It was crazy.

All of a sudden they came in and she had platelets of 3.2 and almost no platelet count. And her white blood count was all phooey. And they’re saying, “We’re going to give her transfusions.” And I’m trying to think back to sixth grade science, what is a red blood cell? What is platelet? What is hemoglobin? What does a white blood cell do? And they’re telling me all of this. And I’m trying to reach my pediatrician’s office and they’re talking about transferring us to Newark Beth Israel. And then all of a sudden the hematologist came. When she says, “Why don’t you sit down?” You know, when you hear those words in a doctor’s office, nothing good ever follows those and we had to just figure out how we were going to do this.

And we knew that Memorial Sloan Kettering would be the place to go. We were fortunate to have a friend who made a phone call for us. So she was in the hospital until I think it was Sunday the 3rd or 4th. That Wednesday, we were up there in pediatrics and we were very fortunate that Dr. Peter Steinhardt was our doctor, a man with a kind and caring heart. And we just, it was a blur. All of a sudden you went from having a child, to then a child who maybe had something medically wrong with her marrow, to suddenly finding out that she likely had leukemia, to we were there on a Wednesday. They were like, “If you want to do fertility preservation, it has to start on Friday. And, you know, you’re going to come in every two or three days and she’s going to need transfusions and we’re going to put in a metaport and we’re going to figure out what we’re going to do for chemo.” And just when you think you finally have it, you go in and they say to you, “And we think she needs a bone marrow transplant.” And that just takes the wind out from your sails.

You don’t know, that just seemed beyond anything else. Everything else, they had a plan for. Everything else, they’re selling you a lot of hope. “We have these medications. This is the plan. This is the protocol. This is how it happens. This is the timeline.” And then they mention the transplant and a lot of ifs start to come into that conversation. If we can find a match, if there’s a match in your family, we hope we can find a match. And also, it’s the first time you start hearing these ifs and hopes and thinks. Everything had been very clear-cut before then. We were very, very, very fortunate. And it’s hard to sometimes find the silver lining and say you’re lucky in any of this. But they were able to quickly figure out that Annie did have a bunch of matches in the registry should we need it. But our daughter, Lainey, was a 10 out of 10 match.

Dr. Fox: Right. And how old was Annie when this was happening?

Jodi: Annie was 20 years. No, I’m sorry. She was 17 years old. She had turned 17 on October 8th. She got sick on January 1st.

Dr. Fox: So she was a junior in high school?

Jodi: She was a junior in high school. Before that day, her biggest worry after she passed her driving test in October was whether she was going to take the SAT or the ACT. That was the biggest decision in her life.

Dr. Fox: What did this do to her high school life, sort of the normal teenager life?

Jodi: The first couple of months, it was I don’t want to say great, but she became the center of everybody’s world. We had the house with the best snacks. There were a lot of candy platters and cookie platters and cases of ice cream and things that got delivered to our house. Her friends would come over every day after school. We had a Monday night watch party for “The Bachelor.” And then when the boys found out that the girls were coming to my house every Monday, the boys started coming too and we had people in the house and all afternoon she’d have tutors come and people come. And it felt not normal, but we were able to do that.

Dr. Fox: Right. And they were able to see her despite the chemo and infection and all that.

Jodi: As long as people were healthy. We had bottles of Purell. If you had a sniffle, you didn’t come. But it was as important… Mental health is important as physical health and keeping her engaged.

Dr. Fox: Especially for a teenager.

Jodi: And when we were in the hospital, we’d go to MSK and we brought an entourage. My sister would come, my friends who live in the city, they’d bring lunch. Everybody knew we’d have this whole group of people. We’d have the best snacks in the hospital. All the nurses and doctors knew us and we made it fun. And that was all great until about mid-March 2020. And then the world came to a screeching halt for everyone. But especially for a family that has an immunocompromised person, things get a little different. And about that time is when Annie started to be hospitalized a lot more with neutropenic fevers and things like that.

Over the next three years after that, Annie spent about 250 nights inpatient at MSK. And that was just her and I. And a lot of days there. That was just the nights, but we spent plenty of full days. And at that point, they didn’t let my husband come with us. They didn’t let anybody else come with us. And it was just Annie and I there along with the staff.

Dr. Fox: Wow.

Jodi: And it changed very, very quickly. It got a lot harder for her to see her friends. Everybody had to see each other outside. Over the summer, you know, the kids started seeing each other more and being more social. And it was hard for her because she couldn’t do that. But they tried and they would come over. And I know it isn’t easy because you could sit in someone’s nice warm house or you could sit out on my deck in your winter coat with a bunch of heaters. But they came and they always supported her. And she actually, the fall of her senior year, was able to go back to school because it was great for someone who’s immunocompromised.

Dr. Fox: Everyone was in masks, finally.

Jodi: Half the kids didn’t come. Everybody was in masks, the desks were six feet apart. It was fabulous if you’re immunocompromised. But unfortunately, that January of 2021, after Annie had had her first transplant in July of 2021, July 2020, she had her first transplant from Lainey. And that January, her numbers started looking a little odd and they were trying to figure it out. In late-January, early-February, found out that her leukemia had relapsed.

Dr. Fox: What was that like for her sister, for Lainey? Number one, it’s very emotional to be a donor for your sister and then to find out that it didn’t take or it took, but it didn’t last or whatever it is.

Jodi: The good news is Lainey is a scientist. She studied biomedical engineering in college and has her master’s in it and is pursuing a PhD. She understands and she knows that the fact that Annie relapsed isn’t because her marrow didn’t work, it’s because cancer is stronger than anything. And it meant that a cancer cell was still alive in her body. Fortunately, she understood that. But prior to them allowing you to be a donor for your sibling, you do have to meet with a psychologist from the from the hospital and talk about it. But she understood that and there was never any hesitation for her to do it. And she actually… Most donations now, 90% of them, are peripheral stem cells. It’s kind of like giving plasma. They did ask Lainey if it would be okay. They took marrow from her, which is a minor same day surgical procedure. She did that. She actually gave peripheral stem cells. In between Annie’s first and second transplant, they needed to give her a boost, just to try and keep her from getting infection. So she did it that way. So she always likes now that she can say that she did it both ways so that when people have questions about donating…

Dr. Fox: She can compare.

Jodi: She can actually give them, you know, a very clear answer about it both ways.

Dr. Fox: Wow.

Jodi: But she didn’t hesitate.

Dr. Fox: Did you hesitate?

Jodi: I think I was in such a fog that, you know, she understood it. We understood it. And I think we were just so myopic about just getting everything done that we needed to get done.

Dr. Fox: Yeah.

Jodi: And the second transplant was from an anonymous umbilical stem cell donor. Her doctor, they evaluated, you know, MSK, it’s very much a team-based approach. And when the transplant team met to talk about the case, they felt that was what was best. And one of her doctors, Dr. Andromachi Scaradavou is a world-renowned expert on umbilical stem cell transplants, besides being an amazing, caring, kind person. And she helped us. But that, you know, has its own issues because you have to find a sample with the correct volume for basically a full-grown adult. And then is it slightly less matched? Do you go with less match, which it was, and then you deal with the Graft versus Host Disease and so many things. So, you know, you weigh the pros and the cons. They say a little bit of Graft versus Host Disease actually has a very strong anti-lipenic property. And she had no GVHD with her first transplant. So, you know, a little bit in the second, but then you start taking medications, suppress your immune system, it never comes back and things spiral and that’s basically what happened with Annie. She didn’t die from her leukemia. She died from a transplant-related complication called post-transplant lymphoprolific disease.

Dr. Fox: Right. And during all this time, you’re talking to January 2021, she’s applying to college. Got in everywhere, right?

Jodi: She applied to 12 colleges. She got into 12 colleges and she decided to go to Syracuse to the Newhouse School of Public Communications. It was an amazing program. She wanted to major in public relations. They have an unbelievable school with fabulous opportunities. And while other people evaluate their colleges by, you know, lots of different things, for us, the proximity being three hours from home made it so that if she needed to come home for a doctor’s visit or if I needed to go up, you know, a lot of people, when they move into their dorm, they go find their favorite coffee shop or their, you know, their study place. We had to go find a local oncologist for her to go every Wednesday and get her labs done.

But she had a team of doctors in New York who are committed to making her life as normal as possible and that they didn’t save her life for her to sit home and not live it. And that they were going to do everything they could so that she could go to college and they were willing to work and make it happen. And if that meant that the doctor’s office was on Epic and MSK has their own proprietary system at the time, they’re switching to Epic now, that if it meant that I had to take screenshots of her lab every week and text it over to her team so that they could enter it in, that’s what we were going to do. The doctors at Syracuse and the doctors in New York worked very hard to make it so that she could be there and make it as normal as possible.

Dr. Fox: When Annie was either choosing her colleges, so you’re talking the spring of 2021 and she’s sort of anticipating going to college, at the time, if you can remember, what was her thought of what college would be like? Did she think it’s going to be normal plus I go to doctors, but you think I’m not going to be well, but I’d rather be in college than be sitting at home? I’m just trying to say, what was her expectation coming into college? Because it’s such a crazy thing that you’re in the middle of this and you’re like, and bye, I’m going to college, which is what she should be doing, obviously. But like, how did she reconcile that in her brain?

Jodi: It was always changing. She spent 45 days in the hospital prior to her high school graduation, having her second transplant. She had it in May 2021. I think her focus was first finding out where she was going to go to college and then right when she decided where she was going, right into her second transplant. And then her goal was getting to her high school graduation. And she told her doctors, “I’m going to be there.” And they said, “We’re going to do everything we can to get you there.” And I said to them, “No, you don’t seem to understand. She’s telling you she’s going to be there. So I would suggest that you figure out a way that she is unhooked from her IV and all of her things, because it’s going to be a lot less messy for you to arrange for her to be there than for her to go herself, but she is going.” And she left the hospital in the afternoon of June 23rd and she walked across that stage on the morning of June 24th. She was committed and she knew that that was going to happen.

Dr. Fox: Fair amount of applause at that graduation?

Jodi: Lots of applause. But during that time, she had to come to terms with the fact that COVID was still rampant, that she was going to have to live alone, that living in the Petri dish of a dorm room was not really in her best interest, that living alone. And that had its pros and cons for her at that point. Over the course of her treatment, she lost her hair three times, both with the rounds of chemo she had and then she had her hormones were all out of wack. And as her hair was growing in, she went through another period where a lot of her hair fell out and she was growing it back. But it afforded her some privacy. It’s interesting the way the kids are. She would be bald on her private story to her friends, but not in real life in front of people, like the way that kids can see social media in the world and and things. But it gave her a little privacy in her room with her medicine, with not feeling well. She could go to bed earlier. All of that. But it makes it much harder to fit in socially and, you know, have someone to always go out for dinner with and stuff.

She was lucky. She had a lot of good friends up there, but it’s hard. You know, she couldn’t keep up the pace with everyone. And then she came home December of her freshman year and she hadn’t felt well for a few weeks before then. And she had some Graft versus Host Disease on her skin and she’d had some fevers and back and forth. She came home, I think, on December 17th. Then the next day, she wound up in the hospital with pneumonia. She was in for a few weeks and she was really struggling over the next few weeks. She had a lot of health issues. She had HHV-6, which is basically like kind of like rosy all over rash and Graft versus Host Disease and on all these steroids and some GVHD in her lungs. And they were trying to figure everything out.

She’s having all these other symptoms and they put her back on one of her immunosuppressants to see if that would help a little bit. And she wound up on Martin Luther King Day that you’re having a very rare toxic reaction to her immunosuppressant. And she suffered four major seizures that day. And she wound up in the hospital for a number of weeks and then in a pediatric rehab for three weeks, she had to learn to sit, stand, and walk again. And she could not go back up school until after spring break. But she insisted that she was not dropping her classes. She was not pulling out of the semester. She was not pulling out of sorority rush, that she was going to do it all from her hospital bed. And she did.

And then after spring break, she was still in a wheelchair. My husband and I moved up to Syracuse with her and we lived in a hotel until the end of the semester. And she continued to do PT up there. And she said to me, “You’re not wheeling me into my classroom. I’m going to wheel myself in.” And as she learned to walk, she figured out how to walk slowly and carefully and walk into her classrooms again. But she was committed to going to college.

Dr. Fox: Until that point, I guess in the first semester, was it evident to everyone else at Syracuse that she was dealing with this or was she able to sort of keep it just amongst her circle if she wanted to? I don’t know.

Jodi: I think she had a hard time admitting that everybody knew it. In the world of social media that we live in, if you know one person, you know everyone. And she was not, it wasn’t private. Everybody knew. And I think more people knew she moved slower than some of the other kids. She had a hard time. She lived on the mountain at Syracuse, which is up this giant flight of stairs, 100-something stairs. She took the trolley up because she couldn’t walk the stairs. She couldn’t climb up on an elevated surface without help at a fraternity party. She couldn’t do a lot of the other things, but she tried. She tried to do as much as she could. And I think the people now realize how hard it was. I think sometimes hindsight’s 20-20 and people didn’t realize it. And then now a lot of the dots are being connected. And especially her friends are starting to realize how sick she was.

Dr. Fox: Right. What was her, what were her spirits like during all of this? Obviously she’s very, she’s tenacious and she’s, you know, she’s definitely committed to making this work for her. But was she able to maintain that sparkle, the glitter?

Jodi: Most of the time, you know? Listen, anybody who’s had a child at college, certainly a daughter at college, has gotten the phone call, the hysteria.

Dr. Fox: Fair.

Jodi: Everybody has gotten it.

Dr. Fox: Several times, yes.

Jodi: Not, you know, alone, everybody has gotten it, but it is different. You know, another person can have a headache and it’s just a headache. And if she had a headache, you have to take your temperature. And then if you have it, you have to go to the doctor. Like you can’t just have a fever and sleep for an hour. You have to go get labs and, you know, you don’t have to go every Wednesday to get your blood drawn and you don’t have to fly home for an infusion. And it was hard. It wasn’t easy. You know, she had a hard time sometimes finding her connection. She felt a little bit alone, but it was a choice that she made and then we supported her in and, you know, she had to deal, unfortunately, with the ups and downs of it. But she found things to keep her involved. She decided to get certified to be a host on the Syracuse radio station and she was a DJ there. And then as she was going to school for her sophomore year, Gift of Life reached out to her through a connect. They didn’t even know that she’d had transplants.

Dr. Fox: Oh, really?

Jodi: No.

Dr. Fox: Just like spam type of thing?

Jodi: No, it was through a connection through camp, actually, I think that they got her name. And she reached out. When she told them, they invited her to become a campus ambassador. So she held some swab drives while she was at campus. She’s had two matches from those drives, which we love to see. And she rushed a sorority and she got involved. She was involved in clubs through Newhouse and she kept herself busy.

Dr. Fox: Wow. That’s amazing. I guess because you mentioned the Gift of Life here, tell us about Gift of Life because it’s certainly going to be sort of what we’re talking about also. Who are they and what does that mean to our listeners who might not know?

Jodi: So Gift of Life runs a bone marrow registry. A lot of people know about Be the Match or now it’s NMDP, National Marrow Donor Program. They rebranded. And all the registries are connected and it’s just the means in which you get into the registry. And basically to join the bone marrow registry used to be complicated. It used to require you giving blood. Now it is three Q-tips that you wipe on the inside of your cheek and do a simple swab. It is less invasive than any COVID swab that we did or any infectious virus swab that they do at a hospital. This is three little Q-tips that go in an envelope. It’s an interesting story how Gift of Life was founded. I think 30, I think about 30 years ago, there was a man named Jay Feinberg. And he needed a bone marrow transplant and his doctors basically said to him, “We’re really sorry. Get your affairs in order. There’s very few Jewish people in the registry and you’re probably not going to find a match.”

Dr. Fox: Just to explain…

Jodi: It was culturally.

Dr. Fox: But, see, it’s not that you need bone marrow from someone who has the same faith as you. It’s just the genetic ancestry.

Jodi: Genetic ancestry. And basically they said, “We probably can’t help you.” And his mother said, “Not on my watch.” And pre-email, started faxing and writing letters to every synagogue and Jewish community center around the country and holding swab drives.

Dr. Fox: I remember those vividly. Whatever I was 18, 19, 20, when that was happening, I remember vividly, I knew the name Jay Feinberg because of this.

Jodi: And they did not find a match for him up until he was at the last drive and there was a woman helping. She was deathly afraid of needles and she wasn’t going to do it. And as they were packing up, she’s like, “Oh, fine, just do it.” And it turned out that she was his match. I mean, those are just stories you just, you can’t make up. It just, it was, you know, the right person at the right time. And it took a while and he created this organization, Gift of Life. Well, it started out because he was looking for someone to match his, you know, cultural and ethnic identity. They are working with everyone and diversity is desperately needed in the registry. And they have helped facilitate swab drives and matches for all these years. And once Annie got involved with it and we were trying to figure out what to do after she died, they were having a memorial service for her. She died on August 25th and on September 5th, they were having a memorial service up in Syracuse.

And when we started speaking with the rabbi from Hallel and people from the sorority and trying to figure out what to do, it came up, why don’t we do a swab drive in her memory? And Andrew, my husband, somehow called it Annie’s Army, that he was going to induct everybody into Annie’s Army. And that first day we swabbed, I believe it was 95 people. And in the past year, we’ve swabbed 2,670 people. We’ve had 11 matches and one transplant so far. I do know that there is one more transplant potentially on deck for the end of August that came from that very first swab drive. So fingers crossed that everything goes through with that. The numbers work against people who need a match. When you swab for the registry, you have a less than 1% chance of matching with someone.

Dr. Fox: With anyone.

Jodi: With anyone. And then should you match with them, you only have a 20% chance of going to transplant. So you are looking for a needle in a haystack.

Dr. Fox: Yeah. You’re trying to find, again, it’s not exactly this, but think about trying to find your identical twin out in the world.

Jodi: Exactly.

Dr. Fox: Just randomly.

Jodi: Yeah. If you’re Caucasian, you have about a 79% chance of finding a match. If you’re black, you have a 29% chance of finding a match in the registry. AAPI, 47%. Hispanic, 48%. So we need people of every race, every ethnicity. We need as many people, but we also need young people. And that’s the issue because the ideal candidate is between the ages of 18 and 35. So while all of my friends are like, “Here, let me swab,” I say to them, “I love you. And I love that you want to do this, but nobody wants your marrow.”

Dr. Fox: You’re old. Our old marrow ain’t good.

Jodi: Our marrow is not, you know, is not really what they’re looking for. It’s 18 to 35. What I love about Gift of Life and getting young people involved in it, there are almost no barriers to entry. There are a few basic health questions. There are a few medical conditions that would rule you out. But other than that, it doesn’t cost you anything. Should you be chosen as a donor and you choose to do it, there is no medical cost to you. It’s a way for people to get involved. They can bring more friends in. They can hold a drive. They can get swabbed. There are so many ways for them to participate. And, you know, a lot of charities you have to continually give money to. And I like that young college students and people who are just starting out can get involved in something so meaningful and so impactful without it costing them any money.

Dr. Fox: Right. And you, and you may get chosen. And since, like you said, nowadays, the majority of what they’re looking for are stem cells, which is basically just like giving blood, a needle in your arm. You set in a chair for it’s a little bit longer hours-wise.

Jodi: I think it’s between four and seven hours.

Dr. Fox: But conceptually, it’s the same. That’s what we’re talking about. It’s whereas bone marrow, you have to get like anesthesia and they go into your bone, which is still doable. But it’s a little bit more… I think I told you before, my son-in-law was a match for someone. And he just in the past year donated stem cells and, you know, he got swabbed almost like randomly, you know. He’s like, “Oh, yeah, they had it at my school or whatever.” And so, you know, stood in line with everyone else, got swabbed, and he never thought about it. Aand then they called him and, you know, he would never have known he was a match for someone out there in the world who was sick and needed him. And of course, he’s happy to help. He’s like, “Great. Like, you know, why wouldn’t I do this?” But if you don’t get swabbed, you’ll never know. They’ll never find you is the point.

Jodi: Exactly. And it’s funny because Lainey had swabbed to be in the registry. So they swab on many birthright trips. So that’s where they get a lot of donors from. I don’t know if they are currently, they were swabbing everybody who entered the Israeli army. So that’s why I’ve heard of a lot of people who have gotten their donors from Israel through birthright trips. That’s where a lot of the kids do it. And Lainey said when she swabs is we’re in birthright and they told us what we’re going to do. She didn’t really understand it. She didn’t really know.

Dr. Fox: “Sign here, swab this.” “Okay.”

Jodi: Exactly. And now, you know, when I get a chance to sometimes talk with kids who are running the drives, very often the students who are doing them, their schools run it themselves. But if I get a chance to sometimes connect with them and talk, what I always say is Annie’s doctors always say we have all these great medications, we have fabulous medicines, we have chemo’s and all these therapies and this whole plan. But none of that will work without the transplant, because if you leave this marrow and that’s working improperly, you’re not going to get a different result than you had before. And that relies completely and totally on the kindness and goodness of people, of one person choosing to help another person. And so in this world where we’ve lost so much personal connection, where we rely on computers and robots and A.I. and so many things, here is a chance for one person to make a choice to help another person. And I love being able to help facilitate that.

Dr. Fox: And it’s such a like a poetic fitting to Annie’s memory.

Jodi: Yes.

Dr. Fox: Right? That what we’re talking about. It’s, again, like you said, the science is unbelievable, but it takes you to a point. And without that human connection and kindness and that spark, really, it doesn’t work. It won’t happen. And the fact that, you know, she had this horrible thing happen to her and to your family, it’s unthinkable, obviously, but that somehow you can take that, and I honestly don’t know how you have the strength to do it, but somehow you’re able to get out of bed in the morning and do this and turn that into a process that’s going to help others and save other lives is just, it’s amazing. For lack of it. I mean, there’s there is no good word to describe it, but it is amazing. How do you get out of bed and do this? Is it just the drive to make meaning in life?

Jodi: It really is. You turn pain into purpose and power. You know, I have unfortunately found, you know, fortunately found a community of other mothers who have gone through similar things. And we all have different causes that we are championing because you have to put that energy somewhere. You know, we spent a lot of hours putting a lot of energy into trying to cure our children. And we were moving at a certain pace and then you kind of hit a wall head-first, but we still have that energy in us and it needs to go somewhere. And if we can make a difference and make it so that someone else doesn’t have to go through what our kids did, there’s no choice but to do it.

Dr. Fox: How do people get involved? How do they learn about what you’re doing about Annie? Like, where can they turn?

Jodi: So just this week, we launched our foundation. There is nobody who loved their birthday more than Annie Eisner. Nobody. And anybody who knew Annie from the time she was a little girl knew that Annie’s birthday was celebrated in the month of Annietober. And the whole month, not just October 8th, it was just one big celebration. It was the theme of her bat mitzvah and every person who knew her. And so last year, it started that in Annietober, we did a lot of fundraising and we started doing a lot of swab drives. A lot of local businesses partnered with us and donated a portion of their proceeds on a certain day or sold certain items. And we put a lot of focus into Annietober, but then the swab drives kept continuing after that. And our fundraising for Cycle for Survival continued after that.

And last December, when Lainey was asking for things for Hanukkah, one friend had sold bracelets that said “Annietober.” And Lainey said to me, “Can I get a bracelet that says Annietober 365?” And that name just stuck with me. And as we were coming up with names for our foundation, because we knew we needed to create a mechanism to help us have more fundraisers and, you know, while we contribute to Gift of Life and to Cycle for Survival, for us to hold some events, it became harder for us to do them with people just sending money directly to the organizations. We needed to set up a 501(c)(3) so that we could hold events. That name just stuck with me. And I said, “That’s the name of our foundation.”

So the mission of the Annietober 365 Foundation is to, one, live every day like it’s your birthday. Two, it’s to help people be able to celebrate more birthdays by funding cancer research for prevention and new treatments. And three, to help find more matches for people in need of a transplant because on the day you get your transplant, you celebrate a second birthday. And we figured that those three things really encapsulate what Annie’s spirit was about. And so anybody who wants to read more about it can go to our website, annietober365.com. You could read a lot about Annie. You could find out how to donate, how to get involved, how to reach out to us to hold a swab drive, any place where there are groups of people between the ages of 18 and 35. I’m not sure about New York or other states. In New Jersey, we can actually swab you at 17 and then your registry goes live on your 18th birthday.

We did last week one on the Intrepid. He works with Dr. Jordan Metzl. He’s a doctor at the Hospital for Special Surgery who runs some fabulous outdoor fitness events and gets lots of young professionals. And we were very fortunate to join him on the deck of the Intrepid on a beautiful night. We swabbed 50 people there. And then while I was there, I got to meet a lovely young woman who asked us if we would come run one at her company, a financial tech company with lots of young people. And so that’s how it goes, word of mouth, connecting like that. If you have a child who is a student on any campus or if you are a student at any campus, if you reach out to me at jodieisner@annietober365.com, I can connect you with Gift of Life. It is so easy to run a swab drive. You could do it. We do a lot with sororities, Swab a Sister nights right at a meeting. You can have a table at the student union at the library in a philanthropy event.

Halal is a wonderful partner. Other organizations on campuses will always work with you and help you set up a table at their activities fairs. Gift of Life, it’s a 15-minute training for the person who’s running the drive. They send you a box with everything from the tablecloth, to swag to give out, to all the marketing materials that you need. All you need is a time and a place. They send you the FedEx envelope and label to send the swabs back. And it’s very easy once you say to someone, “Would you like to potentially save a life?” It always makes people stop and think like, “Really? I could do that?” And you spend a few minutes telling them what it is. And it’s so simple. They fill out a QR code. You give them an envelope and three swabs. They swab themselves. You’re never touching anybody else’s bodily fluid. People always wonder about that. The person is just wiping the inside of their cheeks themselves and sealing it an envelope themselves. It’s safe. It’s easy. And it truly can save a life.

Dr. Fox: Yeah. And in this crazy world where everyone seems to be looking for meaning, right? Because we all have no meaning anymore, you know, to tell someone who’s 18 or 19, “You can do this yourself and you can enlist others and you could be responsible for saving someone’s life,” is that’s a lot in a good way. Like, wait, I can do this? Like I have this power? Yes. Like people do have this power. I do have to say for the record before we wrap up here that Leslie Teicher who connected us, who I know is listening. So Leslie, you had to go 45 minutes till you hear your name. But thank you for connecting us. She’s, I know, one of your close friends, one of my close friends. She actually was going to come here and sit here with us for this, but is on a plane traveling so can’t, but she is definitely lurking.

Jodi: She actually landed in Austin this morning and sent me a picture because the first thing that she saw was the name of a bakery, Annie’s Bakery this morning. And I believe in the signs. And she sent me. So the signs are there. She might not be here next to us, but she got the sign today. So the connection is all there.

Dr. Fox: So, so that’s the first. And as I told you before, I know when you mentioned how Annie was like massive pop culture aficionado, which is literally the exact opposite from me so I could have learned a lot from her, but I know that when she was sick, I don’t know how the connection was made with the toast.

Jodi: She was probably one of their early, early…

Dr. Fox: Early toasters?

Jodi: She was a very devoted toaster.

Dr. Fox: Right. And somehow someone connected them that they reached out to her. They sent, was it swag or a message or there was some connection that they had?

Jodi: Right before she got sick, our friend bought her for Hanukkah, we used to do this gift exchange with friends and they bought her a piece from their first merch line. And when she got it, she screamed like she won the Publishers Clearing House, the Mega Millions all at once. You would have thought someone gave her like gold bullion, but it was this Morning Toast sweatshirt. And when she got sick, her friends made it their mission to reach out to every celebrity trying to get her messages. Someone knew someone who knew someone’s brother, who got her one video and someone else got through. Someone got through to Jackie, someone got through to Claudia and they’ve sent her these videos and they made her day.

Dr. Fox: So as you might know, or I think you do, and a lot of our listeners know, so I have a connection to them. So I reach out to them just to say, “Hey, you know, I want to let you know that, you know, Jodi’s coming to the podcast. Do you remember?” Because I don’t, I, you know, celebrity, who knows, right? I said, “Do you remember, you know, a year or two ago reaching out to a, you know, a nice young woman, Annie?” And they both said, “Of course we remember.” And they said please send our greatest love to you and to your entire family. And it wasn’t like, you know, this is like, I sent a text, the three dots and like four seconds later, it’s like, “Of course we remember Annie.” So, you know, her memory lives on amongst the toasters as well.

Jodi: They’re a very tight community. There were all sorts of subgroups at Facebook groups that she followed. It was a big part of her day every day. It’s amazing. They got her through a lot of her treatments.

Dr. Fox: Yeah. And this podcast will be dropping in the great month of Annietober. And obviously we’ll include all the links on the websites and everything so our listeners can reach out. Jodi, thank you so much for doing this. I know it’s hard. I know it’s hard to talk about your daughter. It’s both beautiful to talk about her and hard to talk about her. And I very much appreciate that. But I know that I am really moved to hear the story and I’m really glad that I got to hear it. And I know that our listeners are really going to appreciate it and get a tremendous amount from it. So however difficult it is to do this, it does have a great impact. So thank you.

Jodi: Thank you so much for having me. And I hope that anybody who’s listening who might be interested in learning more about it will reach out because I think that together we all really can make a big difference.

Dr. Fox: Thank you for listening to the Healthful Woman podcast. To learn more about our podcast, please visit our website at www.healthfulwoman.com. If you have any questions about this podcast or any other topic you would like us to address, please feel free to email us at hw@healthfulwoman.com. Have a great day. Information discussed in Healthful Woman is intended for educational uses only. It does not replace medical care from your physician. Healthful Woman is meant to expand your knowledge of women’s health and does not replace ongoing care from your regular physician or gynecologist. We encourage you to speak with your doctor about specific diagnoses and treatment options for an effective treatment plan.