This episode is with Scott Lenfestey and his mother Nancy, an Honored Family with the St. Baldrick's Foundation. In this podcast, Scott chronicles his battle with acute lymphoblastic leukemia and the ways cancer research has helped in his remission. Nancy also explains how a family's life is turned upside down with a cancer diagnosis and what they have done to stay positive through it all. As the largest private funder of childhood cancer research grants, the St. Baldrick’s Foundation believes that kids are special and deserve to be treated that way. In 2016, Sport Clips Haircuts proudly signed on as St. Baldrick’s’ first National Partner, committing to give more than $1 million dollars in support of childhood cancer research over the next three years. For more information, visit: Sport Clips and St. Baldrick's Team Up to Fight Childhood Cancer
Here’s a link to Scott’s speech at the 6th Congressional Childhood Cancer Summit:https://www.youtube.com/watch?v=GRcRXFN6L1g&t=189s
| Episode Air Date |
Guest Name |
Guest Title |
Topic(s) |
| August 30, 2019 |
Scott and Nancy Lenfestey |
St. Baldrick's Honored Family |
Personal reflections of advances in childhood cancer research |
Each episode of the Podcast is also available on iTunes and the Google Play store.
Transcription:
Chad Jordan: All right. Hey everybody, this is Chad Jordan from Sport Clips. This is another edition of our Hall of Fame podcast, I got a couple of Hall of Famers with me today. This episode is part of our Haircuts with Heart series in which we look at a couple of the causes that Sport Clips supports around the country, and this one will be a featured. Those of you watching on YouTube, you can already see this one's probably going to be... what this one's going to be about. It's St. Baldrick's Foundation which is about childhood cancer research and funding that and all that kind of stuff.
We're going to get into a lot of that stuff today. I got two very special guests with me. I am going to have the very youngest of the two special guests, go ahead and introduce... Okay. I want your name, your age, what grade you're going into, I'm going to add that, and your favorite college basketball team. All right, let's hear it from you. Who are you?
Scott Lenfestey: My name is Scott. I'm 10 years old, and I'm going into fifth grade.
Chad Jordan: Good.
Scott Lenfestey: My favorite college basketball team is the Tar Heels.
Chad Jordan: Yes. Go Heels. Okay. We're in Raleigh by the way, area, Chapel Hill is very nearby. You'll find out in a minute why he's especially fond of the Tar Heels. But alongside him, is special guests number two, I'm going to go ahead and have her introduce herself for us and tell us a little bit about herself.
Nancy Lenfestey: Hi, my name is Nancy Lenfestey and I am an advocacy and family relations specialist with the St. Baldrick's Foundation.
Chad Jordan: Your favorite college, just college period?
Nancy Lenfestey: UNC.
Chad Jordan: Yes. UNC, so you're an alum?
Nancy Lenfestey: I am.
Chad Jordan: Okay.
Nancy Lenfestey: My husband and I have been, and that's where he got his treatments, so forever indebted.
Chad Jordan: Awesome. Yeah, we're excited today not just because we're in one of my favorite states in all the country in the world. But we have Scott and Nancy, and they're going to walk us through a little bit of their journey with childhood cancer. Nancy, as she mentioned now works with St. Baldrick's, and we want to loop all that in together and we really want to drive home the importance of childhood cancer research.
Scott is literally a living and walking and good-looking testimony to the power of great treatment and good research. All right, let's start with you Scott. At three years of age, right? Thereabout, I'm sure you remember it well, but you were diagnosed with what?
Scott Lenfestey: I was diagnosed with acute lymphoblastic leukemia or ALL as it is more commonly known.
Chad Jordan: Oh, I think you still have part of that speech memorized buddy. That sounded sounded pretty professional. Do you remember anything about the early diagnosis, treatment, going in and out of the hospital? Do you remember any of that stuff?
Scott Lenfestey: I remember a little bit of it.
Chad Jordan: What parts?
Scott Lenfestey: Pentamidine.
Chad Jordan: Okay.
Scott Lenfestey: I remember spinal taps, and yeah.
Chad Jordan: Are those, do you remember them because you have nightmares about them? Or you dread maybe ever-
Scott Lenfestey: I usually remember like I would go in and my dad would sit me on his lap and then I would, and then they would give me the propofol and then he would put me on the bed, and then I was asleep for the rest of that.
Chad Jordan: Maybe mom will have you step in. He's three years old.
Nancy Lenfestey: Yeah.
Chad Jordan: Why don't you turn the mic to you for this portion, if you don't mind. He's three years old living... You had a five year old son.
Nancy Lenfestey: Yes, we had a five year old, a three year old and a four month old.
Chad Jordan: Okay.
Nancy Lenfestey: And-
Chad Jordan: You had your hands full in other words, like so many families out there.
Nancy Lenfestey: I remember we were going out of town on weekend, we were driving, I looked behind me and I saw Scott and he was extremely Pale, like a sheet of paper. I remarked to my husband, "Rob, Scott looks really pale today and I don't know, it's a virus or-"
Chad Jordan: Had he had a fever or anything going into this trip? Or anything that-
Nancy Lenfestey: Nothing that stood out. Absent any symptoms, we just like, "Oh right, we'll just keep an eye on him." We get to the hotel, start checking in and on the counter is a bowl of fake fruit. Scott says, "Oh, that looks yummy." Then Nick, our five-year-old son, "Scott, you can't eat that. Not like the time you ate all those fake grapes in our playroom." We're like, "Wait, what? What did you just say?" Apparently we had been given some fake fruit as play food, but it was a bunch of grapes and they were detachable and Scott had eaten, not just one.
Chad Jordan: Wow.
Nancy Lenfestey: But several.
Chad Jordan: Is this like days before this trip and now it explains why he's turning Pale or anything like that? Or?
Nancy Lenfestey: Well, wried to figure out by asking the five-year-old, "When did this happen? How long ago?" Of course, he didn't have a really great concept of length of time, so we had no clue. Was this ever the summer? Was it last a week? Prior to this, Scott was completely healthy, like good eater, good sleeper. Never difficult, never had a sick visit to the doctor.
Chad Jordan: Wow.
Nancy Lenfestey: It just so happened that we had a well child check two days later, so we went ahead and emailed the pediatrician and said, "We just received some interesting information-"
Chad Jordan: Because, three kids?
Nancy Lenfestey: "Would you mind if we added a CVC to the well child check just to rue out, maybe poisoning, because we were thinking maybe that's why."
Chad Jordan: Yeah. That's great. The paranoid parent gene kicked in that we all have-
Nancy Lenfestey: Yes.
Chad Jordan: And that prompted you guys to ask for something that you might not have requested on a couple of days later.
Nancy Lenfestey: If we didn't have that little bit of information. Went to the well child check, vision check fine, everything looked good, and then at nine o'clock that night we get a call from the pediatrician and he said, "I'm afraid I have some concerning news." I just immediately thought, "Oh, lead poisoning."
Chad Jordan: Right. Right, I knew it.
Nancy Lenfestey: Yeah. I was like, "Oh, it's that lead poisoning?" No, it was leukemia, which came out of nowhere. I mean, I did not even think that was a possibility. At that time Scott was running up and down the hall upstairs. I'm like, "There's no way, there has to be a mistake, because he seems okay from his part." Ran up to my husband, I said, "Pediatrician's on the phone and he's concerned that Scott has leukemia," and my husband's a physician so he's like, "Wait, there must be some mistake."
But talked through it with the pediatrician who then said, "I've made an appointment for you with the division Chief of Pediatric Hematology Oncology at UNC for the very next morning." Didn't sleep at all that night-
Chad Jordan: I'm sure. I mean, the shock of it with you not... So many families that get the diagnosis, there's been something maybe leading up to it, their bruising or some sickness or something, and so that's a fear in the back of their head that maybe, "What if it's cancer?" You're literally thinking maybe he just ate something wonky.
Nancy Lenfestey: Yes.
Chad Jordan: The shock of that night not, I'm sure you weren't able to sleep.
Nancy Lenfestey: No, not at all. We went the next morning, still in shock. The oncologist actually offered from my husband to look at the slides under the microscope, just because he still couldn't believe it. Confirmed it, and then boom, boom, boom. "We have a room for you upstairs. We've scheduled him for surgery for tomorrow to have the port placed." I forgot to bring the port.
Chad Jordan: It has been removed I assume.
Nancy Lenfestey: Yeah.
Chad Jordan: Okay.
Nancy Lenfestey: But we kept it as a souvenir.
Chad Jordan: All right.
Nancy Lenfestey: Had surgery the next day, started chemo and he just didn't have time to process everything. Just thinking, here we are the week before Thanksgiving-
Chad Jordan: Oh, I hadn't even figured that part out yet. Okay.
Nancy Lenfestey: Yeah. The week before Thanksgiving-
Chad Jordan: Lord have mercy.
Nancy Lenfestey: Not that there's ever a good time to be diagnosed-
Chad Jordan: No.
Nancy Lenfestey: But that was certainly not a good time.
Chad Jordan: Yup. Holidays rolling around, yeah.
Nancy Lenfestey: All these thoughts running through your head, like, "How are we going to get through this?" I remember asking, "How long is the treatment?" I had no clue. They said. "It's two years for girls and three years for boys because leukemia tends to hang out in the testes and in the brain.
Chad Jordan: Yep.
Nancy Lenfestey: They need an extra year of treatment. I thought can the kids even make it through, three years of treatment? Because he's three now. By the time he's six, he will have been on chemo for half of his life.
Chad Jordan: Yeah.
Nancy Lenfestey: How many people make it through? Then you start wondering, is this going to be our last Thanksgiving and Christmas together? I mean, you can't help but go through that thought process. But I let myself have a pity party for about a week and a half, two weeks, and then it's like, "Mm-mm (negative)- this, we can't continue on for three years with this mindset, something's got to change." Then our mentality morphed into, "What's next on the list, what do we have to do next?" But it was always contained to one day. We could only do one day at a time because it was just too overwhelming. There were too many unknowns.
But he transformed in this happy go lucky kid at the beginning of treatment to, at the end of the first month he had been on steroids for an entire month, and his stomach was distended, his legs got really scrawny and spindly because they was muscle tone. He couldn't walk, he was crawling or had to be carried, which at three, you know is not typical. It was just like, "Wow, where did that child go in just a month?" His mood changed, and it was a very difficult transition. But we knew we had to do what we had to do.
Chad Jordan: At the time you guys have family nearby, what support system did you have?
Nancy Lenfestey: We do have some family. My husband's family lives in Greensboro.
Chad Jordan: Okay.
Nancy Lenfestey: Then I have a brother in Raleigh and friends and neighbors. I mean, throughout this experience I've realized that I've had renewed faith in humanity, because we always hear about the bad stuff. But people were coming out of the woodwork, strangers willing to help child with cancer, I guess it really pulls at the heartstrings, and it was a difficult time. But there are definitely highlights, and I think we've managed to pull together and learn things along the way, like enjoy the time you have together because things change in an instant.
Because before the day he was diagnosed, we were just thinking, "Hmm, this week we've got a big dilemma, do we we go to martial arts or do we go to the PTA magic show?"
Chad Jordan: Right. The priorities of life.
Nancy Lenfestey: That was what we were facing, and then everything out the window, re-prioritize and it was cold and flu season-
Chad Jordan: Right, very susceptible too.
Nancy Lenfestey: Yes.
Chad Jordan: Catching something and especially with two other kids. Was the five year old in kindergarten?
Nancy Lenfestey: Yes.
Chad Jordan: Yeah.
Nancy Lenfestey: Yeah. We ended up having to homeschool him for a while just to get through cold and flu season. We had the baby. That's hard for families when you're separated, because my husband at the hospital with Scott, but the other two needed to have some normalcy too.
Chad Jordan: Right.
Nancy Lenfestey: We were split up. We had to use face time and talk and watch movies together simultaneously, them at the hospital, us at home-
Chad Jordan: Was Christmas that year spent at the hospital? Or was he home?
Nancy Lenfestey: He was lucky to be home.
Chad Jordan: Okay.
Nancy Lenfestey: [inaudible 00:12:11] crawling around on the floor. Yeah.
Chad Jordan: Were there touch and go moments? When was the first time where things... This is probably the scariest, getting diagnosed. Were there other times where it looked like we're in trouble here?
Nancy Lenfestey: Yeah, I mean he spent a week in the hospital after diagnosis and we thought, we're saying goodbye to the nurses and, "Hope we don't have to see you again in a while." In two weeks we were back, two weeks later we were back. Then you wonder, is this what it's going to be like? Come back every two weeks for a week or more? But there was a period where he had a virus, and it made his LAG levels just plummet.
When your LAG levels plummet, they cut back on his medication and they said, "Okay, well it's going to do more harm than good to give him medication when he's at this level. Let's wait a week or so and come back and recheck and then we can resume the medication." We did, but his levels just continued to stay low for weeks turned into months, and in that time period he wasn't getting the chemo, and your brain starts to wonder because of this virus, which is a very common virus, part of a virus that kids get all the time, is the cancer going to come back?
That was a very difficult period trying to keep calm and not freak out that he's not getting the chemo, he needs to fight the cancer. But we're going to trust our oncologist on this and know that delays are normal in treatment, and hope that this works out. But that's actually why we ended up, he ended up doing three and a half years of treatment instead of three years to tack on the extra time then-
Chad Jordan: Because he missed some? Yeah. All right, let's give the microphone back to Scott over here. Okay. You're three, you get diagnosed, you go through these treatments. Scott, can you answer for me? Were you ever able to do some of the normal childhood stuff? Could you go to preschool? Could you go to kindergarten? Were you're able to do that kind of stuff?
Scott Lenfestey: No, I wasn't, and I wasn't allowed to play any sports because I had a port.
Chad Jordan: Right.
Scott Lenfestey: They need that to get the medicine to my heart to pump it.
Chad Jordan: So when a needle goes in and puts in the medicine into that port and then that's it gets into your blood that way?
Scott Lenfestey: Yeah, hat way it goes into my heart and then it pumps do my bloodstream. If that somehow got damaged or if I was throwing a football and it hit my chest, then that would delay my treatment. I wasn't allowed to do sports and I wasn't allowed to... I didn't really go outside the house, because if I had gotten the flu then that would've been a big deal.
Chad Jordan: Yeah.
Scott Lenfestey: Even a small cold would have been like... it would have hurt my LAGs a little bit. I was living life in a bubble. But now I feel very lucky to still be here.
Chad Jordan: No, you are a walking testimony of, again, the importance of research and great treatment. You went through, was it three and a half years? You get all the way to six years old? Six and a half... I mean, first of all, was every birthday party just epic? I mean, was this your family just going crazy every time they threw your birthday party? Could you have friends over for birthdays? What were those like?
Scott Lenfestey: I think I just spent it mostly at home and stuff. They were like, come home with a cake and we eat it at home, but-
Nancy Lenfestey: We were scared to go too far away, but we would go Great Wolf Lodge or places nearby so that if anything happened we can make it back to the hospital.
Chad Jordan: How did your guy's lives change during his treatment? In terms of, now you're not worrying about martial arts, you're worrying about how to get him back and forth and stay tethered to a center where he can get treatment?
Nancy Lenfestey: Yeah. Pretty much everything revolved on around making sure he got what he needed. We used to be planners and we planned out trips. We planned out things six to 12 months in advance, and with cancer you just can't do that. Because if he had a fever, even if it was related to a cold, we'd have to take him to the emergency room just to make sure it wasn't an infection.
Chad Jordan: Yeah.
Nancy Lenfestey: That became the way of life for us and we learned to take spontaneous trips like, "Oh, well it seems like he's doing okay. Maybe we can go to the beach today." It was no longer planning ahead, it was learning to live in the moment.
Chad Jordan: Right. Was there ever a time where you guys turned a corner in terms of your thinking and your mindset? I'm sure the early years, the early days and weeks, it's fear all the time, 24 hours a day. Was there ever a clearing even while he's still in the middle of treatment where there's some normalcy that returned?
Nancy Lenfestey: Yeah. It was actually a St. Baldrick's event.
Chad Jordan: Okay.
Nancy Lenfestey: Because-
Chad Jordan: Were you involved yet with them at all? Or?
Nancy Lenfestey: Yeah.
Chad Jordan: Okay.
Nancy Lenfestey: Wasn't involved-
Chad Jordan: You can take.
Nancy Lenfestey: But I knew that he was approaching three months into treatment. He was approaching them as difficult phase, and it was called delayed intensification.
Chad Jordan: Okay.
Nancy Lenfestey: That's when he would lose his hair. I was reading the newspaper and saw that St. Baldrick's was having their downtown Raleigh event coming up soon.
Chad Jordan: In what year? This is-
Nancy Lenfestey: 2012.
Chad Jordan: Okay.
Nancy Lenfestey: I was talking to my husband and older son at the time and they said, "Maybe we can shave our heads, so when Scott loses his hair, he won't be the only person at home without hair. Then we can raise awareness, and research funding and yeah. That might be a good experience." I said, "Sure. Sign them up-"
Chad Jordan: All the men in your life were going to not have hair, so why not? Let's do it. Yeah.
Nancy Lenfestey: Then Scott chimed in, he said, "Well, I want to do it to," and I said, "I wasn't prepared for that," because I didn't want him to have that stereotypical bald, cancer kid love.
Chad Jordan: Yep.
Nancy Lenfestey: I said, "Scott, you're going to lose your hair soon enough. You don't have to do it early." He was very persistent. I said, "Well, let's just think about it. Give it some time." Well, he kept talking to me about it-
Chad Jordan: She's trying to talk you out of it, buddy. That's what was going on. Mother knows best.
Nancy Lenfestey: Yeah.
Chad Jordan: No.
Nancy Lenfestey: But his stubbornness kicked in, he's like, "Mom, I really want to do it."
Chad Jordan: He gets stuff from his dad I bet. Yeah.
Nancy Lenfestey: He's like, "I really want to do it," and I said, I thought about it and something clicked. I had an epiphany, and it's like you look back on your life the last few months and you're thinking, cancer has robbed us of so much in an instant, and we didn't ask for it, we didn't want it, but it just came in like a hurricane-
Chad Jordan: You won the bad lottery. Yeah.
Nancy Lenfestey: Why let cancer continue to take one more thing when he's going to lose his hair? I remember talking to moms of kids in clinic who said, "Yeah, Brian went to sleep last night with a head full of hair, and when he woke up it was just laying on his pillow." I thought, "Well, that's traumatic."
Chad Jordan: Yeah, exactly. It scars them. Yeah.
Nancy Lenfestey: I don't know that we want to go through that. But, changed my mind and like, "Let's let Scott do it on his terms." Lose his hair when he wants to and say, "Take that cancer." That day was a major turning point, because I didn't know how he would react when he saw himself without hair.
Chad Jordan: Yeah. Did it go down to the skin or was it still a little bit of fuzz?
Nancy Lenfestey: No fuzz.
Chad Jordan: Oh Wow. Okay. They scalped you. All right.
Nancy Lenfestey: He had seen other kids in clinic that were bald and I'm sure he was wondering if that was going to happen and when? But when he saw himself, he was on stage, he was all smiles dimples-
Chad Jordan: Yes, everybody's cheering. Yeah.
Nancy Lenfestey: We actually, it shocked me that we were celebrating the loss of his hair, not mourning it.
Chad Jordan: Yeah.
Nancy Lenfestey: We realize at that point, we don't have to just be reactive to cancer anymore. We can be proactive. We can do things along the way, and we should do these things as a family, we've got a platform now. That was a turning point for us. We realized-
Chad Jordan: That's amazing.
Nancy Lenfestey: We can change things up here.
Chad Jordan: Yeah. I love it. Let's go back to Scott, if we can. Can you give me some of the good days of treatment? When you were going through treatment, can you give me some good memories that you had, whether it was trips that you went on or family time? What are some of the good days that you remember?
Scott Lenfestey: After the really long treatment days, my dad would take me to tons of restaurants nearby, that I really, really liked.
Chad Jordan: Like what? Give them a plug, give them a shout out.
Scott Lenfestey: Oh, I like K&W.
Chad Jordan: K and W? What is that?
Scott Lenfestey: It's like a-
Nancy Lenfestey: Cafeteria.
Chad Jordan: Cafeteria? That's what I thought. Okay. Yeah. Because you get to pick whatever you want. Did you head right for the desserts? Or did you? Or are you good boy?
Scott Lenfestey: No.
Chad Jordan: Okay.
Scott Lenfestey: I ate roast beef, because-
Chad Jordan: Oh, that's my favorite. Yes. Okay, great roast beef. Okay.
Scott Lenfestey: I got that and I got-
Chad Jordan: Just you and him went?
Scott Lenfestey: No. Me and dad. Yeah.
Chad Jordan: Yeah. Just you and your dad. Okay. Good time together.
Scott Lenfestey: Then sometimes I would remember being in a hospital because I got a cold.
Chad Jordan: Yeah.
Scott Lenfestey: I would stay in there for two days, and me and my dad were super close to each other, and we were eating the fried chicken lunch the next morning-
Chad Jordan: For breakfast?
Scott Lenfestey: No. For lunch.
Chad Jordan: Okay.
Scott Lenfestey: Yeah, that was really good.
Chad Jordan: Yeah. Boy, you and food seem to be... and by the way, I didn't mention this yet because if you're watching on youtube, you can see within arms reach of Scott is a whole bunch of root beer, root beer flavored candy, five bottled root beer. That's the preference. He's got... Do you have a sweet tooth or is it just root beer? What's up with you and root beer?
Scott Lenfestey: I don't know. I just really like root beer.
Chad Jordan: Yeah. Did you get hooked when you were a little kid?
Scott Lenfestey: No.
Chad Jordan: No. Okay. This is a recent thing?
Scott Lenfestey: I'm kind of on my first year.
Chad Jordan: Yeah. Well, we've told him he cannot leave this room until he finishes these five bottles of root beer, all this candy. He's going to be on a sugar high for the rest of the day. You went through treatment for three and a half years? Yeah. Do you remember when the doctor said, "That's it. This is your last treatment. You're good to go?"
Scott Lenfestey: I don't remember that, but I remember after my treatment was over, they took out my port. I remember that, and that was after my treatment was done. I was so happy that they-
Chad Jordan: You had had that the whole time, right? Did that now mean you could do sports? Your brother could beat you up? He'd been waiting for three years.
Scott Lenfestey: Well, I had been beating him.
Chad Jordan: Oh yeah. It's unfair. He could not retaliate because you could hit him, but he couldn't, he would probably get busted if he did something to you.
Scott Lenfestey: Yeah. It was just like this bumping my chest for three and a half years of my life. I didn't even think that much about it unless my mom would ask you, "What do you want to do when you're off treatment?" I was like, "I want to get my port out."
Chad Jordan: Yes. Yeah. You probably used to have to always wear baggy clothes, right? Because you didn't want something snagging on it or whatever? Speaking of which, we got you one of these Sport Clips shirts that's baggy, but you'll grow into it. The do it with passion or don't do it at all. You've done something with passion. I saw a YouTube clip. In fact, we might cut to it right here in a second. But you went, was that Washington D.C.? Is that where it were? Is that where that was?
Scott Lenfestey: Yeah.
Chad Jordan: You gave a speech in front of... What was that thing that you did? That was so, I mean, blew me away. What was that?
Scott Lenfestey: That was at the caucus. Until I went to this humongous room, there was tons of people in these chairs.
Chad Jordan: You're what, seven years old at the time?
Scott Lenfestey: Yes. Seven.
Chad Jordan: Okay. You're done with treatment, and you're there in front of this big room.
Scott Lenfestey: I'm like just talking along about the need for an increase in NIH funding and, to fund-
Chad Jordan: What kind of funding?
Scott Lenfestey: National Institutes of Health.
Chad Jordan: Okay.
Scott Lenfestey: The STAR Act, we wanted to sign the STAR Act into law that year, and now the STAR Act is passed and what we want this year is to actually fund the STAR Act, because they signed it to law and we want to fund it. STAR Act stands for Survivorship Treatment Access Research. That year I was just talking, that was my first year I've been, and I've been almost every year since then.
Chad Jordan: Have you spoken again?
Scott Lenfestey: I've been into meetings, but I haven't spoken.
Chad Jordan: Okay, okay. Because if they needed to get funded they probably should have you come give another speech, because the time you were there is when the law got passed, right? Obviously you're very convincing.
Scott Lenfestey: Yeah.
Chad Jordan: Did you write that speech yourself? Or how did that work?
Scott Lenfestey: No, my mom-
Chad Jordan: No, your mom. Okay.
Scott Lenfestey: [crosstalk 00:26:52] memorize it.
Chad Jordan: You had it down, like memorize, I even saw like you would stop where you knew they were going to clap for you. You would stop and let them clap, or if they were going to laugh and some of the parts of it.
Scott Lenfestey: Sometimes like when I give a speech, they clap because they think I'm like, I don't know, maybe they think I'm finished. But it's like I say-
Chad Jordan: "Hey, let me finish here. Come on."
Scott Lenfestey: I say like five words, and then they start clapping sometimes.
Chad Jordan: Well, it's just, you'll get this, you'll understand this when you're an adult. When kids say something intelligently and it makes sense, we're so shocked that we want to applaud for them, right? Now, you have a cause you have a mission and everybody's passionate about it. Which is why I'm giving you this passion tee-shirt.
Nancy Lenfestey: Really interesting because, congress is used to seeing adults every day, but it's not everyday that kids are there-
Chad Jordan: It's tough to dismiss a kid, right?
Nancy Lenfestey: Oh, yeah.
Chad Jordan: Especially one that survived cancer.
Nancy Lenfestey: In our meetings I would prep him beforehand and say, "This is what we're here today for, this is what we're asking for." I didn't know if he was soaking it in, but he was.
Chad Jordan: Yeah.
Nancy Lenfestey: We went into our meeting with our representative David Price and I said, "Scott, is there's anything you want to say before the meeting?" I said, "If there's anything you want to say, they want to hear from you, so feel free to chime in." We start the meeting, I'm going into our requests, and then towards the end Scott says, "I like to say something if that's okay."
Chad Jordan: Off, this is not a prepared speech, right? Okay.
Nancy Lenfestey: I thought, what is he going to say? We all shift our attention, turned to Scott, and he said, "Childhood cancer is the number one disease killer of kids in the US, and we need help to change that. I think cosponsoring the STAR Act is a step in the right direction, so can I count on you to sign on to this?"
Chad Jordan: Oh my goodness, man. You laid it to them, dude.
Nancy Lenfestey: Congressman Price, he's paused and he decided, he said, "Well, I will do my very best." Within a week we got an email from his staff, where it's saying that he had signed on.
Chad Jordan: Wow.
Nancy Lenfestey: I said, "Scott, this is the power of advocacy, ad at a young age, you're already doing this." Every year since then, he has been our closer, where he rounds it out and puts the... applies the pressure on their class. But I think part of this is the reason why he's still here, because it wasn't that long ago as you know, that kids, but even with his type of leukemia didn't have many options. They were told, just take them home, keep them comfortable.
Chad Jordan: Yeah.
Nancy Lenfestey: Now kids with his type of leukemia have a greater than 90% cure rate.
Chad Jordan: Wow. Amazing.
Nancy Lenfestey: Yeah. With new discoveries that even kids with [inaudible 00:30:04] leukemia, hard to treat recurrent leukemia, they are starting to have treatment options as well, and that's the power of research.
Chad Jordan: Yeah.
Nancy Lenfestey: But what we want is for this to happen for all kids with cancer, not just a select few.
Chad Jordan: Yeah.
Nancy Lenfestey: That's why we're passionate. That's why we return year after year.
Chad Jordan: Well, you just referenced it, Nancy. I do know about it that Scott is... this is like a before and after story, because in 1982, my brother was diagnosed with, at three years of age with the same exact type of cancer that Scott has. I was the older brother. What's your older brother's name?
Scott Lenfestey: Nick.
Chad Jordan: Nick. All right. I was the nick in the situation and I remember going back and forth to the hospital. We were at Walter Reed Hospital in Maryland, and three years in at six, whereas you're finishing your treatment... My brother passed away at six because there wasn't that much advancement at the time. Now here we are 30 some years later and I'm sitting down with the grown up version of my brother, right? He didn't make it to 10 or 11 years old, and now you're getting ready to turn 11.
I'm thrilled by your story, your advocacy. It's working. You're a hero whether you know it or not. I want you to keep doing some great work. I got a couple of questions and then we're, we're going to finish this thing. Okay?
Scott Lenfestey: Okay.
Chad Jordan: First in the 80s, it's a long time, but you see Stranger Things? You're allowed to watch stranger things? Did you watch Stranger Things 3?
Scott Lenfestey: Yeah.
Chad Jordan: Yeah, the third season?
Scott Lenfestey: Yeah. I'm planning to.
Chad Jordan: Okay. Well, the third season, when they're at the mall, the Star Court mall and all that stuff, that's the 80s, right?
Scott Lenfestey: Yeah.
Chad Jordan: Back in the 80s, that's when my brother was sick and we got to go on a make-a-wish trip to Disneyland. I hear rumor that you have been on not just the Disneyland at one time, but a couple times and was one of them with make-a-wish?
Scott Lenfestey: I've been to Disney World once-
Chad Jordan: Disney World. That's right. Disneyland's in California. Disney World in Florida.
Scott Lenfestey: I went once with make-a-wish.
Chad Jordan: Yeah.
Scott Lenfestey: Then I've been-
Chad Jordan: Now you're hooked. Yes.
Scott Lenfestey: One year we went like three times.
Chad Jordan: Did you guys have annual pass yet? Or-
Scott Lenfestey: We do have the annual pass.
Chad Jordan: Okay. All right. Okay. That was smart.
Scott Lenfestey: Then we went, very recently we went on a nine day trip-
Chad Jordan: To Disney World? The Epcot Center, Animal Kingdom?
Scott Lenfestey: [crosstalk 00:32:41] a week ago. Maybe a little more than a week ago, but we went there for nine days [inaudible 00:32:49].
Chad Jordan: Didn't you get sick of it after nine days?
Scott Lenfestey: No.
Chad Jordan: No, you could live there? Huh?
Scott Lenfestey: This is Disney World.
Chad Jordan: How old were you when you did the make-a-wish one?
Scott Lenfestey: Six.
Chad Jordan: Were you still undergoing treatment? Okay. When you went, did they pick you up in a limousine and all that kind of stuff? Or do you remember?
Scott Lenfestey: No, I don't think so, but we didn't just go to Disney World. We went to Lego Land, and [inaudible 00:33:12] too.
Chad Jordan: Okay. You tore up Orlando. Yeah. You went all over, and you're getting ready, tomorrow you're going on a cruise?
Scott Lenfestey: Yeah. Disney cruise.
Chad Jordan: Wait, it's a Disney cruise? Oh, you left that part out, when we were talking earlier. You are hooked on Disney?
Scott Lenfestey: Yeah.
Chad Jordan: All right, so Disney cruise. What are you looking forward to about the Disney cruise? What have you seen that you're like, "I got to do that while I'm there."
Scott Lenfestey: The Mickey bars.
Chad Jordan: The Mickey bars.
Scott Lenfestey: Yeah.
Chad Jordan: What is that?
Scott Lenfestey: It's a chocolate covered ice cream on a stick.
Chad Jordan: Okay. You're going to just, that's going to be breakfast, lunch, dinner? You're going to wake up in the middle of the night and go have some some?
Scott Lenfestey: You can get infinite Mickey bars-
Chad Jordan: Right, yeah, of course. I'm mean, you're going to get spoiled and your brother and sister get to go on this. Everybody's going?
Scott Lenfestey: [inaudible 00:33:55
Chad Jordan: Wow. Okay. Well, hey, you deserve it. You deserve, and so so your parents deserve it. When did we find out, maybe this is a mom question that, actually let's have mom answer this one first. Okay? The three and a half years are up. You guys have survived the treatments, the touch and go moments, all that kind of stuff. How does this get finished? What do they tell you? What do they say? Like once a treatment is done, clean bill of health, we've got to check him every week. Walk me through that, for those that aren't familiar.
Nancy Lenfestey: You know what's interesting is, when you're first diagnosed, you're really scared of chemo and what that's going to do, because you know that all the side effects are going to accompany that. Then towards the end of treatment you change and you're like, "Oh, the chemo has kept the cancer away for three years now. Now we're not going to have our security blanket. What does that mean?" You start to get a little worried with worries that you didn't think you'd have before. Before you're like, "Oh, I can't wait til we're done with treatment."
Those were concerns that we had, but it didn't take long to just soak up the life of normalcy again. He still had to go back every month for the first year, for... I think it was every two weeks in the beginning. Then they just length it, so then every month for the first year to check LAGs, just to make sure LAG levels look good, nothing funky happening. Then year two, he would go every two months, year three every three months. He's at every four now and he's going later this month.
Chad Jordan: Nothing, but great news every time you've gone?
Nancy Lenfestey: There have been some blips with his LAGs, so that's why he's going back this month. Just in the back of your mind, you just-
Chad Jordan: Yes, of course. I mean, once you've gotten the very first phone call ever, you think that it could happen.
Nancy Lenfestey: Yeah. There have been concerns, and the other thing is even if kids like him are lucky enough to make it through treatment, two thirds of childhood cancer survivors go on to have longterm chronics, often serious side effects. That can be hearing loss, heart defects and fertility, graph versus host disease, second cancers, the list goes on and on. We'll always be on the lookout for those things. But for now he's just embracing life. He started doing triathlons, and-
Chad Jordan: Oh, wait, what? You did not mention that. You had told me that you're playing basketball.
Scott Lenfestey: Yeah, [crosstalk 00:36:42] basketball, and I've done triathlon [crosstalk 00:36:43] and I've done four before this year.
Chad Jordan: How can you possibly be that athletic when you got such a late start? Are you trying to make up for lost time? Is that what's going on?
Scott Lenfestey: Yeah.
Chad Jordan: Yeah.
Scott Lenfestey: Yeah.
Chad Jordan: What is it about triathlons that you love?
Scott Lenfestey: I've done some just trying to triathlons, thought that is, they raised cancer research, from childhood cancer research funding. You can choose three different courses. Yeah, it's pretty fun.
Chad Jordan: Are you an American Ninja Warrior fan? Or anything like that?
Scott Lenfestey: I don't watch it a lot, but I know-
Chad Jordan: I could see you crushing the course is what I'm saying.
Scott Lenfestey: I've done the Tar Heel youth triathlons too, because we live super close to the UNC Wellness Center. Yeah, I've done a triathlon with them too.
Chad Jordan: Have you ever been to a basketball game? Tar Heel basketball game? Yeah. Oh, you look at me like I'm crazy for even asking that. You're like, "Yeah, I sit in the front row, I'm their biggest fan." Shoot. Okay, well maybe you can invite me sometime. I was going to invite you if you hadn't been, but here's what I want to do. Do you have anything else you want to add that's just on the top of your head that you want to mention about surviving cancer, being an advocate, a hero, an athlete. Is there anything that you want to mention before I get to the fun questions at the end?
Scott Lenfestey: Well, there's always room for more funding and more support. There's a ton of things that you can do to just raise a little bit more research. Even if that's just shaving your head, buying a shirt, doing something like that, that you can still help no matter what. Every little bit helped with cancer research. You don't know, maybe you could save some kid's life by doing that, by shaving your head and raising $3, you don't know. Every single thing helps.
Chad Jordan: I love it. You're exactly right. This is what we at Sport Clips sponsor, we did $1 million in 2016 through 2019. We've re upped for that. We do a Brave The Shave Events where our stylists go out and actually shave the people's heads. We host, in fact, I know there's some that we host the Brave The Shave events. What Scott just said, for those of you that are a Sport Clips folks that are listening, that everybody can do a little bit more, and you never know the difference that you're going to make. I encourage you all, whether it's participating in a Brave The Shave, donating doing something in your store, raffles, all of that stuff to raise awareness and funding. Do whatever it takes because Scott, Nancy, they are a living proof that research works and funding works.
You're ready for these questions? You do not have any idea what these are going to be, just so you know. All right?
Scott Lenfestey: Yeah.
Chad Jordan: Okay. If you could have one superpower, all right? Think about all the marvel heroes, superheroes and Batman's in the DC comic ones. If you could have one superpower, what would it be?
Scott Lenfestey: Teleportation.
Chad Jordan: Tele... what? You let me stall. I was trying to give you time to think about an answer. Teleportation. Why would it be teleportation? What's so-
Scott Lenfestey: You can get anywhere in like two seconds.
Chad Jordan: It's not because you want to scare people and just show up and freak them out? Okay. It's for your own convenience that you just want to... I bet I know where you would teleport.
Scott Lenfestey: Disney-
Chad Jordan: Disney World? Yes. Shoot. Well, my next question, you're going to answer this. I was going to say the next question was if you could visit anywhere in the world, it doesn't have to be Orlando.
Scott Lenfestey: Okay.
Chad Jordan: Anywhere in the world, how about this, that you've never been to.
Scott Lenfestey: Okay.
Chad Jordan: Where would it be?
Scott Lenfestey: Rome, Italy.
Chad Jordan: Rome? What do you what do you think? Is it pizza? What do you think you would like in Rome?
Scott Lenfestey: Just seems like majestic.
Chad Jordan: Yeah. The architecture and the history. Man, you are deep. Okay. What noise or sound do you love? Hearing it makes you go, yes.
Scott Lenfestey: I don't know. That's a weird one.
Chad Jordan: Yeah. I told you these are going to be, you weren't going to be able to expect these buddy.
Scott Lenfestey: If, I don't know. Zipping up a zipper.
Chad Jordan: You like that sound?
Scott Lenfestey: Yeah.
Chad Jordan: Okay. All right. Now you know how to make him happy for Christmas, mom. Here we go. What noise or sound do you hate?
Scott Lenfestey: When someone scrapes? Like a fork on a plate.
Chad Jordan: Oh, okay. Yeah.
Scott Lenfestey: Like if a fork and a knife scrapes, that [inaudible 00:41:56].
Chad Jordan: Next time you're misbehaving at home, that's what mom's going to do. Just to get at you make you stop. All right. What do you want to be when you grow up?
Scott Lenfestey: Oh, I want to be a video game developer.
Chad Jordan: Oh, so you're a gamer?
Scott Lenfestey: Yeah.
Chad Jordan: Okay. A Fortnight or what? What is your game of choice right now?
Scott Lenfestey: Yeah, Fortnight. I was playing Fortnight earlier, and I've been grinding on Minecraft so much.
Chad Jordan: Did you develop a love for video games while you're going through treatment? Is that where you were because you were at home?
Scott Lenfestey: I mean, kind of.
Chad Jordan: Yeah. It's just because you're a 10 or 11 year old boy, of course, you're going to like video games. Okay. I got two more questions. Question number one, what is your fav... of all the memories with your family, what is your favorite memory?
Scott Lenfestey: Probably, so we went to ski trip, that was really fun.
Chad Jordan: Was it Asheville? Where did you guys go? Asheville?
Scott Lenfestey: Yeah.
Chad Jordan: Yeah.
Scott Lenfestey: Every night, we would sit in front of the fire and just watch Netflix after [inaudible 00:43:06] snowboarding and skiing. Yeah, like that.
Chad Jordan: Okay. All right, mom, you know what?
Nancy Lenfestey: I like Disney World too.
Chad Jordan: I'm going to edit that part out. We knew Disney World, we wanted something. Okay, now we know that you like the snow. All right, here's... this one's going to be a tough, I'm going to see if I can stump you with the last question before I let you go back, and drink all this root beer and play video games for the rest of the day. What have you learned from your mom or dad that you want to be able to be like when you're an old dad one day? Like what thing? Like you said, that's important. What they've done for me in this area. That's how I want to be as a dad.
Nancy Lenfestey: Knowing everything.
Chad Jordan: Oh, okay. Is that both of them, that know everything?
Nancy Lenfestey: Mom, is a lot but dad knows-
Chad Jordan: Mom. Okay. All right. Yeah.
Nancy Lenfestey: But dad knows [crosstalk 00:43:57].
Chad Jordan: Okay. Oh, no, no, no, no, no, no. You should've just stopped while you were ahead. Mom knows a lot of... so she's the one driving you home, buddy. With all these root beers. Okay. Just knowing everything, knowing what's best, all that kind of stuff. I love that.
You guys, thank you so much. You guys are amazing. I love, man, getting to sit down with you and here you are. You got a head full of hair, which by the way, Sport Clips in Raleigh. Watch out. This guy's coming for a haircut soon, and you're playing sports, you, you're getting these amazing trips living and getting to spend time with your family. We didn't really even get to talk much about what your mom does, at the St. Baldrick's, but obviously you guys are still involved. That was a turning point in your lives. Obviously.
I want to thank y'all for joining us and thank everybody out there for supporting St. Baldrick's Foundation. Keep it up. It matters and it works as these guys are able to attest. Thanks so much guys.
Scott Lenfestey: Thank you.
Nancy Lenfestey: Thank you.
Chad Jordan: All right. Thanks everybody and we'll have another episode next week. Tune in then. Thank you.