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Scott Benner 0:00
Welcome back friends to another episode of The Juicebox Podcast.

Jenny 0:13
My name is Jenny. I actually am a NICU nurse. I am a mother of three kids, happily married. I have a nine year old son, Johnny, who's my T Wendy, an 11 year old daughter and a almost 14 year old son. Please

Scott Benner 0:27
don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d exchange.org/juicebox and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t 1d exchange.org/juicebox, it should not take you more than about 10 minutes when you place your first order for ag one with my link, you'll get Five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. This episode of The Juicebox Podcast is sponsored by cozy Earth. Use the offer code juice box at checkout at cozy earth.com and you will save 40% off of your entire order. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about mis boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today at Medtronic diabetes.com/juicebox

Jenny 2:09
My name is Jenny. I actually am a NICU nurse. I work night shift. I am a mother of three kids, happily married. I have a nine year old son, Johnny, who's my diabetes, my T, 1d, 11 year old daughter and a, almost 14 year old son,

Scott Benner 2:26
Anthony, 1411, and nine. Your youngest has type one, my youngest, yep. Okay, that's your son, yep, or us, boy, girl, boy, yep. Boy, girl, boy, and you have something going on too, or No? No, no, it was for me,

Jenny 2:39
no. But Johnny has had a very extensive prior history before diabetes. Okay, we'll get into it then, which would be part of all of this.

Scott Benner 2:47
Yeah, so let me just ask you, like, some foundational questions, do you or your husband or people in your family have other autoimmune issues? The

Jenny 2:55
only thing I know is that my mother in law has rheumatoid arthritis, and her mom had lupus, lupus and RA, okay, so, and then my dad's side of the family, I didn't grow up with my dad. I did reach out to my half sister about diabetes, and she didn't know anything about it. But I don't know if there's other type one or other autoimmune on that side,

Scott Benner 3:15
okay, but you don't have celiac or hypothyroidism, no, okay, and your other two kids, any issues?

Jenny 3:21
No, I had them both tested after he was diagnosed, and they were both negative. Okay,

Scott Benner 3:26
when does the diabetes come up? He's nine. Now. How old was he when he was diagnosed just after

Jenny 3:31
his eighth birthday? Like, yeah, about a month, a little less than a month after his eighth birthday.

Scott Benner 3:35
This has only really been a year or so, a year and a half, yeah, okay, do his other issues come prior to that? Yes,

Jenny 3:44
when he was 23 months old, he was diagnosed with leukemia. Okay, so that was a couple years of intense therapy. He had relapsed twice. So he actually had two bone marrow transplants, or aka another stem cell transplants. The first transplant, he ended up relapsing about eight months later. That transplant actually gave him a lot of side effects called graft versus host disease, where the donor is attacking your body, so he broke out like in a rash. He had a lot of GI issues. We actually had ulcers in his stomach, and he also had some changes in his lungs, so they were calling it lung GVHD. Also,

Scott Benner 4:24
how do you I, you know what? I have a lot of questions already, but I'm gonna go back to the beginning. First, you've got two kids. Your life's chucking along, fine. You have a newborn, less than two years old. How do you notice he's sick? Like, what are the first things that come up? It

Jenny 4:39
was when, like, around Christmas time of 2016 he just started to, you know, act sick, right? He having had a cough and whatnot. He wasn't in school yet, but my other kids were in school. You know, I thought he ended up having, like, the flu one day. He was kind of limping. He had some bruises on him, but I didn't think it was anything abnormal for, like, a. Two year old kid who's active, right? Yeah, I took him in to see the doctor, and she looked at his legs, and she's like, well, I don't think there's anything going on. I don't think we need an X ray. But she looked in his ears. Oh, he has an ear you know, looks like he has an ear infection. So I was like, oh, okay, maybe that explains his wobbliness. Maybe there's some dizziness, I don't know. Came home with some antibiotics, and after several nights of that, he he would spike fevers at night, and then, of course, he had all the respiratory symptoms of having a cold or a flu. So I thought, well, maybe, as the flu is really bad flu, couple days of antibiotics and nothing, I didn't see any changes, he would still spike fevers, and one day, we're giving him a bath, and I saw along his spine, he had some bumps, right? And I thought, oh my gosh, I had made a comment to my husband that the bruises kind of make me think of like leukemia, right? And he got really upset at me, like, don't say that, you know. I didn't even know that. I guess my nursing background, but it wasn't like in my forefront. But anyways, whenever we put the kids to bed that night, I lay down on the couch, you know, on my iPad. I looked up like, how does leukemia present in children? And a lot of it was, you know, limping or bone pain, so kids going for X rays. And then I was like, Oh my gosh, you know, but the kids were already in bed. I was still in denial. I said, You know what? One more day, let's do, let's get through the

Scott Benner 6:23
night, yeah, why don't I get one more good night's sleep for the rest of my life? Yeah,

Jenny 6:28
pretty much, right. So. But then, of course, he spiked him a fever in the middle of the night again. So I called, I made appointment for first thing in the morning, took him into the doctor, and she said, I think you should just go to the ER and get all your answers. My husband was with me, with my 18 he was two, my three and a half year old. I said, Well, let's go home first drop Savina off with your dad, mom and I need it. Let's pack a bag, you know, because I knew I was like, This is what was happening. This is what was happening. And they were wanting to send us to a different hospital. And they said, No, we're gonna go to this other hospital, which is one I work at, because that has the stronger pediatric for

Scott Benner 7:06
you were a NICU nurse at that point. How long have you been doing it for? Since 2001 so 2023, years? How did you not burn out? Doesn't that happen to a lot of people?

Jenny 7:17
You know what? I work night shift, and I night shift is quieter, and I'm only part time. I work, I'm fully benefited part time, so I only do 212, a week, and I get benefits. So that's how you don't get burned out, burned out now, but not from that, just from everything else. Yeah, work is my break, my social hour, I guess actually it's my Juicebox Podcast time.

Scott Benner 7:42
Jenny, listen. First of all, I don't think people should be listening to podcast work, but I realize you do, and it's okay

Jenny 7:47
with me. Well, it's NICU. It's the baby sleep. I have downtime. I just

Scott Benner 7:51
have to say that, like a person talking about their home life and then going, I go to work in a NICU for relaxation, yeah?

Jenny 7:59
Well, especially during the pandemic. I mean, I had three kids at home, and I'm like, get me to work. I want to stay up all night. Have a break. I'll

Scott Benner 8:08
see you guys later. Oh my gosh. All right. No no. So Okay, wow. So your background tells you enough, the bruising, the limping, you figure it out, you get them to the hospital and has your husband like is he more on board at that point? Or do you think he finds out in the hospital? Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juice box. When I tell you about cozy Earth, I'm usually talking about the discount use Juicebox at checkout to save 40% I don't think I take enough time to tell you about the quality of their products, superior softness and enhanced fabric that is durable and won't pill. It's guaranteed for 10 years. Temperature regulation, the cozy Earth sheets that I have are incredibly breathable. You're going to sleep several degrees cooler than normal. These products are made responsibly. They're. Comfortable, and there is a commitment to quality, so much so that you will get 100 night sleep trial on the sheets and a 10 year warranty. Why don't you let cozy Earth create a sanctuary within your home? That's your time. You want to be comfortable sitting in those sheets or lounging in your joggers. Maybe you've just returned from the gym or completed a hard day of work. Jump into the shower, and the next thing you know, you're drying yourself off. You feel like a princess. That's how I feel. I feel like a princess when I dry myself off with those towels. I really do same as when I get into the bed and when I put on these great clothes, cozy earth.com use the offer code Juicebox at checkout. You will save 40% off of the bamboo sheets, the bath sheets, or whatever else you decide to buy at cozy earth.com

Jenny 10:47
Yeah, I think you really found finds out in hospital. I didn't push it too much in letting him, you know, like this is leukemia while we're sitting there, because we were there in the morning and we didn't find out before in the afternoon, just because his his dad had was diagnosed with colon cancer. What about a year and a half before that? So I didn't want to, you know, yeah, stress him out anymore. Did his father pass? He did. He passed the sales in 19 Yeah, so August, yeah, this is after he died. Yeah, it was after, but

Scott Benner 11:19
after your son was diagnosed, yeah, exactly, I say. I say, okay, gosh, what's the treatment for Luke? I mean, you said they Yeah, but walk me through it a little bit. What they do the first time? Well,

Jenny 11:31
obviously we were admitted, he had to get a central line placed in his chest, right? So that entails, like, sterile dressing changes, etc, and that's so that I could get draw labs and take it take, you know, take labs in frequently, and they can get blood infusions and all that stuff. But it's chemotherapy. You're basically trying to hit the bone marrow hard, because leukemia is a blood cancer, and your blood is made from your bone marrow, your stem cells in your blood mirror. So you're trying to constantly hit it hard, because you want to kill all of your all those cells. So you have a cycle of that. You hit it hard, and then you wait, you know, a couple weeks or a month, your all your numbers go down, so your immunocompromised, and then they start to come back up, and then you hit it again. You're just constantly doing that. Okay, just

Scott Benner 12:17
my mom had, you know, cancer, and so we got to see her go through some treatments. But how is it different for I mean, it's got to be different for a child, right? I

Jenny 12:27
mean, yeah, definitely he. He's two years old, and one of the treatments was for him, like, an oral steroid. That's really disgusting, right? And here, with my kids sickly in this hospital, we're trying to shove this nasty stuff in his mouth, and he's like, not having it. So as a NICU nurse, I was like, give me an NG tube. They looked at me like I was crazy. And I'm like, now I'm not afraid of an NG tube. He's already sick. I'm going to be giving him all these meds and his, you know, it's torture, like I'd rather have the, you know, have the tube and less stress on him, you know. So it's a lot of medications, and days he felt good, days he didn't, I'd have to draw labs and drop it off at the New Year's lab. Sometimes we'd have to go in for blood products. Some of the medications would make him really sick. Sometimes we had to be inpatient for the medications because some of them were IV. Or if he had a fever, we'd be in the hospital.

Scott Benner 13:19
Yeah, did you place the tube yourself, or did you let them do it both?

Jenny 13:26
So he would get, because he's only two, they would sedate him to do all of this foam he also leukem is found in his spinal fluid. So that meant that he would have to get spinal taps where they would take samples. They would, you know, buy. Basically, they would sedate him about once a month to take samples of his bone marrow, also to do a spinal tap and inject three different kind of medications to attack the Leukemia. So I took advantage of those every time to put the tube in. Yeah, but there were times at home he threw it up. And at first couple of times I if we had a clinic appointment, then I would just let them put it back in. Sometimes we try to go out without but there was a couple of times where I, I was me and my husband did it herself.

Scott Benner 14:08
What was the early prognosis?

Jenny 14:11
It was not very good for him, because he had, like, there's all these different cytogenetics of the Leukemia and his his MLL rearrangement is complicated to explain, but basically, there was no data on his but it was similar to, like, an infant leukemia, and infant leukemia has got a poor prognosis. I mean, I did deep dives into all the stuff, you know, studies on studies and treatment and treatment, and I just, the way I had to get through it was like, You know what all of this data I'm looking at is from years ago, right? And then I know they're constantly targeting treatment to be safer and safer and safer, so I try not to focus on that. But it was, like, probably, I would say less than 40% that he would make it to five years. Wow,

Scott Benner 14:54
gosh. And then there's a reoccurrence pretty soon after, like, so when. Did they they proclaim Him? How do they talk about it?

Jenny 15:03
Yeah, so you kind of, like, by the second or third, end of the second or third month, you want to be at a certain level, and what if you get to that then, like, Okay, your chances are okay, right? So we continued with the treatment. But then about seven months

Scott Benner 15:16
into it, he relapsed, meaning those numbers rose again, meaning, meaning

Jenny 15:20
they found some abnormal cells in a spinal fluid. Okay, that basically we're like, Okay, we have to have a transplant now. Or the car T cells is another thing right now. They can modify your own T cell like, take collector T cells, modify them so that they can see the Leukemia within you, you know, attack your B cells, because it's B cell leukemia, but he was, he didn't qualify for that yet as a first line of treatment after relapse. So we had to go through this in more intense treatment at a lot of it in the hospital. And then after the first month of that, his numbers rose again. And then they said, Okay, well, that cop, that's kind of like a failure to our reinduction. So now he qualifies for T cells, I say, but we're going to do the T cells, but not. Some people now do T cells, and it'll make maybe cure them, or for long. You know, they don't have to have any more treatment for a long time, as long as they have the T cells. But they were like for him, we really think we still have to do a transplant. We use it as a bridge to get him in deep remission, where we like close to zero as possible, of no cells, because that's your best chance of cure when you have a transplant,

Scott Benner 16:28
I see now, and the transplant is the thing that ends up attacking him, is that? Right?

Jenny 16:33
Yeah, so we didn't have any good donors for him, because we all got tested like we were the most, seven out of 12 match. You know, in the registry, there was no good matches. They found a four out of six match of core blood that they decided to use. They were deciding between one of us as a half match, family match, which they can like manipulate the cells to not tech them. You as much. But they decided to go with the cord the first time. Okay, so we did that. And, you know, because his we because his spinal fluid was, you know, where he was relapsing, we were getting our transplant at UCSF, and they really did not want to do radiation on him, because he's only three, like cranial radiation, right? Our doctor was saying, Yes, his best chance of cures radiation, you got to do it, you know. So we had to struggle to make that decision. Or transplant. Who was the one? You know, UCSF telling us not to do it, and then our own doctor saying, No, you should, you should. But he's only three. So we decided, you know, a lot of these kids relapse again, so let's kick the bucket on trend, on the cranial radiation, and not do it this round, because he's so young, if he relapses again, then fine, we'll, we'll do it the second time, because we don't have a choice, right? But we'll buy him rain development time, you know, right?

Scott Benner 17:58
Can I talk to you for a minute about that. Yeah, two doctors say two different things. It's on you. I mean, you're a Nicky nurse, but tough. Yeah. I mean, it's not, like, what's your husband do for a living? He's an insurance broker, so he's not, he's not a cancer doctor. Then, yeah, no, no, no, yeah. So now you're like, you're sitting there. To me, it feels like somebody, it's agonized, oh my god, like somebody gives you money and then tells you you have to bet it up or down on a football game. And you don't, you don't know anything about the game or the teams, you just have to pick a side, right?

Jenny 18:29
Yeah. I mean, I think what ultimately made us like I said, is you want the best chance of life for your child, so you look at that like, if we were selfish, oh, we don't want to do this again. The Fine, let's just do it now. But ultimately, we're like, Well, if he comes out of his alive, we want his body the most intact and without damage. So we can't do the you know, because there's, there are a lot of kids who relapse again, yeah? Like, let's kick the bucket on the radiation. Yeah, just push it off. If you can push it off, as long as we can, Let's not mess with his brain. We're already messing with his brain, because he he's getting a lot of chemotherapy injected right into his spinal fluid, so we're already damaging it,

Scott Benner 19:07
and it feels like you're doing it. Is that right? Like when you make the decision, does it feel, I mean, or is that a, is that a?

Jenny 19:14
No, I just made, we just kind of made a decision. And you know, you're good, you're

Scott Benner 19:19
you were healthy enough not to live in that forever, yeah, yeah,

Jenny 19:22
okay, just got to move on. It all worked out. That's awesome. I mean,

Scott Benner 19:27
jeez.

Jenny 19:28
So he relapsed again. It

Scott Benner 19:31
all worked out right after another relapse. This is why

Jenny 19:34
I say it worked out, because that first year after transplant was horrendous. He was having a lot of GI issues, basically cramping and mucous. He stools. He'd wake me up at night, just not feeling good, losing weight, you know, I'm basically tube feeding in he has no appetite, and then he breaks out in this rash over his whole body, right? That's he's itchy to the point where he's like scratching in the middle of night, scratching his dressing off, that kind of stuff. Stuff, I'd have to change his dressing in the middle of the night, like it was horrible. So when he relapsed, it was like, All right, we have to do another transplant for sure. Yes, we're doing radiation. His doctor decided, because he had lung changes with the first one, well, we're not going to radiate his lungs. We're not going to do the total body. We're just going to do cranial radiation. So that kind of made me feel good, because we'll hit the rest of the body, however, looking at the brain with just the cranial radiation, yeah, and hope we get it all right, good, but not have the total total body radiation also has a lot more side effects later on or late effects, right? So we kind of avoided that, but we were able to start him on a little bit of steroids to calm this other inflammation and get his rash under control. Because before he went into a second his second transplant was when he was basically a week after his fourth birthday, so a year later, less than a year later,

Scott Benner 20:53
hey, do your other kids know you're alive during all this? Like, how do you oh,

Jenny 20:57
gosh, you know what? We're lucky. My in laws live just around the corner here, and so they just were in charge of the other day. Basically, Mima has been tag team, basically, right? But when it came to school, they would pick them up, they would make dinners all the time, or we would tag team. Do

Scott Benner 21:16
you feel like you missed something?

Jenny 21:18
Oh, for sure. I mean, I missed a lot with I was volunteering. My oldest was in kindergarten when he was diagnosed, so I was doing a lot of volunteering in his class. He's in Spanish immersion, so I didn't it. Wasn't able to help him with any of that. I wasn't able to help him with Spanish, and I didn't have the bandwidth, you know, he came home. It was spend time with him. But all right, hurry up, get to bed, because I need downtime.

Scott Benner 21:43
Can I ask what your your youngest? What was his quality of life like for those two years? Is he just a patient, or is he living as well? No,

Jenny 21:51
I think he was living. No, I'm not just a patient. There's days in the hospital, yeah, he's there was some days that were tough, but, you know, in the hospital on the days where he's feeling fine and we're there just because he had a fever, he's got to get antibiotics like, you know, the siblings could come visit. The hospital has cars. They could drive around. This is all pre COVID. Thank god. I can't imagine the ones that had to deal with it after COVID. When you come home, you know, he is a brother and sister to play with, you know, right? So he was living we made it fun everything, you know, a lot of times after she had a tough procedure, it's like, go to the store and buy something. You know, I always try to make, make things positive for him. If she had to go get poked for something, or this or that, well, let's go to the store and get a treat. So it was something he looked forward, you know, he forgot about what he had to go through and was excited about what he got a lot of stuff. Or

Scott Benner 22:44
we were just talking the other night, I'm sorry, I'll cut you off for a second. And we were just talking the other night for a couple of years, we had this obnoxious blow up ghost in our front yard at Halloween. And when I say obnoxious, it was, it was like 30 feet tall. It was, like, taller than the house, you know? And the other night, Arden goes, Why? Like, because, listen, I don't I'm not throwing shit on anybody, but like, inflatable light up things in our front yard is not really our vibe, yeah. So, so now, as an adult, like, just recently, Arden said she's like, I loved it when I was growing up. And I was like, okay, she was, but why did we have it? She's like, it's not a thing you and mom would buy. And I said, you don't remember? And she said, No, after one of your endo appointments, you get this really great a 1c and you were super happy. And I said, Oh, we should celebrate. What do you want? You can have anything you want. And she went out and bought this giant inflatable ghost for the front yard. But she's, she didn't remember that. That's what it was from. Is really interesting. But, yeah, listen, I'm with you. I would have been like, hey, bad day, whatever.

Jenny 23:44
Here's a toy, exactly. I mean, he, like, he left to buy those little cars that you see it like, you know, CVS or whatever. Just right? $10 car made him happy, you know, yeah, whatever is going to make him happy. I mean, I'm all for it, because he's the one going through the tough stuff, you know.

Scott Benner 24:03
Now looking back, did you does he have much recollection of all that? Um,

Jenny 24:07
yeah. I mean, he remembers, like, so we had two, you know, two long inpatient stays at UCSF, because he was had the transplants, basically, and he was just stuck in the room you can't leave at all. So he remembers the days when his immune system was strong enough that his siblings could come and they would play at UCSF. They have a really, really nice gift shop. He always called it the grocery stop. So we always went to the grocery stop. And like he remembers that, yeah, he's he does, what

Scott Benner 24:36
do you think as a family? Are you closer because of this, or did it cause problems? Or how do you think?

Jenny 24:42
No, I think, I think we are, I think because of it. You know, any time that, any chance that we could we My husband was always like, he's the fun planner, right? Whatever we can do once a quarter, we're going somewhere, whether a drive, I live in California, so up or down the coast. Just been stay in a hotel. The kids love that. So I would stay closer. And then, you know, when the pandemic hit, it didn't freak us out one bit. I mean, we were already used to the masking.

Scott Benner 25:09
I mean, cancer gives you a different perspective, right? Like, we didn't.

Jenny 25:14
We were like, everybody's we were traveling. Like, are you sure you would travel right now? We're like, Yeah. I mean, go stay in the hotels. And hotels are like, empty. My kids know, like, don't touch the elevator button. Use your elbow, or don't touch the high end rail. Hold my hand.

Scott Benner 25:29
Listen, I always tell people, like, I think type one diabetes, you know, having a child diagnosed it too. By the way, your your story is the closest I've come to, like, outright crying while I'm recording the podcast, yeah, because hard not to sit and picture your own kids as two year olds, you know, yeah, during while you're talking, it's terrible, yeah, it's not great. But like, you know, Arden was diagnosed at two, and I think now 18 years later, my perspective is that of a person twice my age, if I ever get forced to list the good thing? You know, some people are like, does anything good come from diabetes? I do feel like I've got, like, you know what I mean? Like, when people get upset about things, I look around I'm like, I don't know what everybody's so upset about. Why?

Jenny 26:12
Because you've been through a lot of stress. You're right. You learn, yeah, you learn to just roll with the punches. Oh, Jenny,

Scott Benner 26:20
if the zombies ever come for the hill, I'm just gonna go. I was waiting for this, yeah, yeah, yeah. But cancer is another thing. It's, it's, yeah, listen, I don't judge people's, you know, struggles, one against the other. I'm not scoring it. But, you know, nobody told me Arden had a 40% chance of living when she was diagnosed with type one diabetes, you know, so, and that's not a thing I had to like,

Jenny 26:41
you know, having having the diagnosis of diabetes really makes, you know, you're already worried. He's already at higher risk of stroke, heart attack, even just secondary cancers, because of all the treatment he's had. And so now to have diabetes, like, I haven't been able to get his ANC under 6.5 so I'm trying, but it's a struggle working on

Scott Benner 27:04
it. That's pretty good. Jenny, don't worry.

Jenny 27:05
Yeah, well, I know, but when I hear what everybody else could do, I'm, I'm, that's what I want. You know, of

Scott Benner 27:11
course. Well, how's variability for them, though, are the highs and lows pretty even, or are you bouncing up and down? Yeah, no,

Jenny 27:17
yeah. Like low. Two hundreds is the high, but more of 180s but so well, if we're going to jump into diabetes, we did the Omnipod five. So we did MDI for three months, and we did the Omnipod five, and I just wanted a little bit more control, so I kept reading about the movie and having just more control for the basal rates, because we would have feet on the floor, pretty decent. And I hate having to constantly, like, bug him at work to give, I mean, at school to give boluses, yeah? So now we're trying, we're trialing the Moby,

Scott Benner 27:46
and that runs the control IQ algorithm, right? Yes, the control IQ

Jenny 27:50
so I can, like, you know, turn up his basal in the morning so that we don't have as high of a okay, I'm still learning. I'm still learning to work in the system. We're like, about a month into it now, yeah, and dealing with the tubing and all that stuff. But he, he, he just rolls with it. He likes, he's like, Oh, you're, you know, he likes to show people his devices. He's so used to being poked and prodded that, I mean, when we were diagnosed, actually with the with diabetes, and we had to go inpatient. Well, to back up the way we found it is because we were following up with some renal labs from his renal doctor, and his sodium is all low. So she's like, give him some sodium supplements. This we test in a week. And she also ordered a urine analysis, and that's where we saw how he was building glucose so that she ordered a glucometer, and then, like, two days later, we find out he's type one diabetic, so he was never in DKA or anything. His agency at that point was 6.8 Yeah.

Scott Benner 28:47
Is there any argument to be made? Does the leukemia or the treatments for it could that well, that's helped with the diagnosis that you know what I mean push towards a diabetes diagnosis? I

Jenny 28:59
mean, it's not a typical thing that happens with kids that have there's also not like as many long term survivors of two transplants, right? So when I asked his transplant doctor, the only thing she could come up with is like, well, we've taxed the immune system so much. I mean, it could just be that, or is it that we have auto immune in the family? I don't know, we're

Scott Benner 29:21
a little of both, or, who knows, right? So the the

Jenny 29:24
Christmas party at school of december 2022 22 he was wearing his mask to school, while everybody was like, not, right? But then the other Christmas party, they have food, so he took his mask off to eat. And then Christmas day, he had a fever. And I know there was another student in his class who also had a fever, so that's why, I think maybe caught something then. But because he was still technically immunocompromised, we had, I had to take him to the ER to because then they have to do a blood culture, give him antibiotics, and then they did a respiratory panel, so it came back to get influenza A okay? And then two months later. Or March, beginning of March, he got type one. So I'm wondering if that was the trigger. I don't know. Well,

Scott Benner 30:06
I just checked with, I mean, I asked chat, G, P, T, by the way, as I asked that, I thought, if I ever do anything really crazy, you know how the cops come collect your computer when you're like a really, like, a big, a bad guy, I think they're gonna look at my computer and be like, What? What the hell was this guy doing? Yeah, what's in this guy's head? I asked, Can leukemia, childhood leukemia, or treatments force a type one diabetes diagnosis, that it could immune system disruption, steroid use and pancreatic damage are all possibilities. So, yeah, Jesus.

Jenny 30:36
So we also found out he does have Hashimotos, right? Okay, I can't remember if I knew that before the type one or not. I don't. I don't remember. I didn't want to feel like going back. He's got so his lab history is long. No

Scott Benner 30:48
one wants your life, by the way, you're like, I can't remember when Hashimotos came. Yeah,

Jenny 30:53
so, but for the longest time, we've been following up with a CSH. And, you know, hits vacillate between two and 10, and they're like, well, he's not symptomatic, blah, blah, but after listening to your podcast and stuff, I'm like, You know what? This kid's got so much tech against him. I want to lift him up any way I can. Yeah, in April, I'm like, get we want to start thyroid meds. Well, let's and I think, I think at that time, we had some that were under two, and I was like, Well, I don't care he has, she's like, but it's a daily medication. You know what we take daily medications? He's got high blood pressure, like he's on insulin now, like, it's not a big deal for me to give him a tiny pill. Yeah, I'd rather give him what he needs to not. Like, have any variables out there? You got too much variables I got to worry about in life, your

Scott Benner 31:39
son might be the only nine year old who would find being in the mob relaxing, like, I can't believe the doctor's like, Oh, it's a daily medication. Like, Oh, you think that's our problem? Yeah?

Jenny 31:49
And so, you know, recently we've also, because he had cranial radiation, he's smaller for his size, right? And all the steroids use because of treat, that's part of treatment for leukemia. We actually held him back kindergarten, so he's a year behind his age, and he's one of the smaller kids in class. So we just started growth hormones a month ago, September. So you know, we're giving him thyroid growth hormones and now insulin.

Scott Benner 32:14
How long do you think the growth hormone takes to kick in? What did they tell you? Well, we started off

Jenny 32:18
on a low dose. He'll get labs strong next month, and then she'll go up. So, I mean, it should start work, start working, but as she ramps it up, he'll grow more, and this is he'll have it through puberty. Yeah,

Scott Benner 32:31
I was gonna say this is a thing that you're expecting to do over years. Yeah, she

Jenny 32:35
even said that for some kids when they're older, when they stop it, they don't feel good. So some people keep it going their whole life. Oh,

Scott Benner 32:44
you need a little bit of it to keep you feeling regular, almost. Okay, that's interesting. Did

Jenny 32:50
they tell you why? Well, he had cranial radiation, so I think that, like we did, the MRI of his pituitary gland before starting, and that looks fine, but because we did 10 days of cranial radiation of two gray. So like 10 days of sedate we sedate him. He'd go into this thing, tube or whatever, and they give him radiation. We did 10 days of that. So I think that because of that, it causes growth horm deficiency,

Scott Benner 33:16
I see, but once you get to your level, and they said you might need some just to feel normal. Like, do you know why that is

Jenny 33:23
because they're deficient. They're you mean, even adults, when you go to sleep, you make growth

Scott Benner 33:27
hormone, right? Oh, I see, I see, I'm sorry. So he wouldn't be making as much, so he wouldn't, well, yeah, he makes

Jenny 33:32
it. But this is supplementing what he's not making enough of. I understand. Okay,

Scott Benner 33:37
yeah, hey, um, did you cry? Like, do you still cry? Or, how long did you cry? When did you stop crying? Did you worry about yourself when you stopped crying? Really,

Jenny 33:47
it's really crazy, because I feel like, if we didn't have diabetes, wow, our life would be so good. I mean, we, I, we feel like we already went we went through it. We went through the gauntlet, I mean, and for everything he went through, like he Yeah, we've replacing these hormones, like, not counting diabetes, he's got high blood pressure, so it takes too much for that. He's got some learning issues because of cranial radiation and all that. Like, he's just a little bit slower, and so he just needs more help, right? But other than that, he's just the normal nine year old kid, you know, and life is chomping along. I mean, compared to we've had some friends that passed away from leukemia. We have a friend who's still battling a lot of pain issues that they can't figure out that's debilitating, and I feel like he got through so much so easily. Oh, you sound great. Diabetes. I'm grateful. I'm great. I am grateful. I'm grateful that he's alive. I mean, I look at him every day, because, honestly, I had a one of my manager sons at the time when all this was happening. Her her son was exactly a year younger than him, and they had the birthday the same week, and he he relapsed, but he. He never, yeah, he passed. So to see that the same time we're going through our second transplant, he's going through his first kind of thing. And, you know, to see them go through, we went through, and what happened like, I am great. I'm grateful. Because, you know, to think about not having him, what that would mean for our family, would

Scott Benner 35:19
just be, we just change everybody, in a way, change

Jenny 35:22
everybody. So, yeah, we got the diabetes. Honestly, it sucks,

Scott Benner 35:27
but that felt like a smack in

Jenny 35:29
the face. Keeps me. Oh, it is a smack in the face. Yeah. Like, what the heck? I mean, if we didn't have this life would be good, like,

Scott Benner 35:37
it only took us seven years to get through this leukemia thing, and then boom, here this is, yeah, I would have listened. I gotta tell you, I had that feeling when Arden thyroid was diagnosed. Yeah. What next? You're like, well, diabetes wasn't enough. Like, you know what I mean? Like, like, we'll do another one here. And that slap in the face is, it really does, like, there's no one to blame for it. I guess some people might blame God or whatnot, like, I'm not in that camp, so I'm not in the camp, yeah? So I'm just like, Oh, God, you know this is keeps happening. And she's like, I

Jenny 36:08
mean, I don't know. I just feel like, somehow, this is whatever. This is his journey. This is his soul's journey that we got to just roll with it, you know? Yeah,

Scott Benner 36:16
did you mark yourself as a resilient person prior to this, or is this something you taught yourself? Do you know? Yeah?

Jenny 36:22
No, I think, yeah. My mom taught me to be this way. She went through my, you know, a lot having being a single parent. I saw her struggle a lot as a single parent raising us under my brother so, but I watched a lot of Oprah growing up. So,

Scott Benner 36:39
like I just found people who had it worse than me, Scott, it makes it all Yeah?

Jenny 36:42
Well, you know it really does. It really does people, you

Scott Benner 36:46
know, over and over again that's brought up in the podcast, and everyone always feels like they're apologetic when they're saying it out loud. You know what I mean. But finding its perspective, finding some perspective,

Jenny 36:56
yeah, perspective. And you know what, I always try like, I don't like, I'm a half a glass half full kind of person, even though I'm not getting me wrong, there's days diabetes, it's, it's the has the glass is empty, just like rare in the midst of the day to day. But stepping back,

Scott Benner 37:15
you're not saying, I don't know what you're saying exactly like, but is like, I don't again, I'm not, yeah, I don't like measuring things against things like I think that the worst thing that's happened to you qualifies as the worst thing that's happened to you. But, yeah, yeah. Are you saying that diabetes gives leukemia, childhood leukemia a run for its money? I think

Jenny 37:34
it's just because I'm so far removed from all that, right? You know in the past, yeah, this is a 24 hour a day thing that I'm thinking of, yeah, like, I don't have that break any like, I don't even think actually, I guess this. This is a good thing. Is it does keep me from thinking about that, because I don't think about relapse. I mean, I I'm grateful that we caught it early, because had we caught it and he was in DKA, I would have been thinking relapse. I would have been a mess.

Scott Benner 38:03
It's interesting. Are you? Are you saying like I climbed out of one pool of shit and now I'm in a different pool of but it stops me from thinking about the first pool. Yeah, for sure. So it's awesome. It

Jenny 38:15
does. It does. And if he ever does start to get ill and whatnot, I think my brain is going to take diabetes and not, yeah, not, not before I want to step back and give kudos to my son, my oldest son. So the second transplant, like I said, we didn't have a good, unmatched donor out there, so they decided to do a family member, and they picked my older son.

Scott Benner 38:35
Oh, wow. So he did a, he did a bone marrow donation. Yeah,

Jenny 38:39
he did a bone marrow for that. That that meant, like he had to get a central line, had to sedate him for that, and then he was connected to this apheresis machine that kind of spun his blood through it and collected his cells, gave back his red blood cells back to him. So he got to spend two nights in the hospital. And he loved it, because it's like, Oh, I get attention now. You know, he's like a king, yeah, yeah, Grandpa, grandpa bringing him Legos. So, yeah, he so technically now Johnny is his Chimera brother, right? Like he's genetically Johnny has Anthony's blood. So if Johnny commits a murder or something, or something leaves blood footprint, like Anthony could be blamed for it.

Scott Benner 39:24
Do they tease each other about that, like I'm gonna commit a crime and

Jenny 39:27
not yet. I think maybe when they're older, they you know, yeah, yeah, not yet. But I wouldn't be surprised if when he's older, he says

Scott Benner 39:36
that, Jenny, wow, you've a genuinely good way about you for having been through so much. I'm sorry to ask you, did this have positive or negative impacts on your marriage? I think positive,

Jenny 39:47
I mean me. I think the way me and my husband got through this is like we give each other space to deal with it our own ways, without, like, nagging each other, you know, divide and conquer. I think in some sense, he probably. Only, especially with diabetes, would probably say that because we don't have as much time, or I'm so focused on the diabetes, because it really is more my thing, like he does. I've tried to have him listen to podcast. He hasn't yet. He doesn't want diabetes and it being the number one thing, and, and I'm like, it, it just, is it just, you can't ignore it away, that's for sure, yeah, no, exactly, until I feel like the more work, and I'm trying to get him to help and understand it more, or at least understand the algorithms and the pumping so that we together can make better decisions, because it's easier, because his brain, I think, is better than mine for this kind of stuff, but really,

Scott Benner 40:36
I think so he better with numbers, or I think he's

Jenny 40:41
just a good critical thinker. And like I said, I work night shift. I'm I'm a zombie mom a lot of times. Okay, so I just think, you know, having his help would be, I'm trying to get him there. We're working on it.

Scott Benner 40:54
Yeah, well, he's a boy, so it'll probably take him till he's 53 but that's how old I start to feel like an

Jenny 40:59
adult. We're working on it, but, like I say, we've because, you know, he's lost his father. He's definitely a family man, you know, and that's what attracted to me, to him, to see how he is with his parents, and the way his parents are with each other. The kid, my kids, as much as the stuff that we've been through, we we go on vacations a lot. These kids have been to Disneyland almost every year. We just do fun things, because we know that this is the time that we have with them. You know, the older they get, the less time we're going to have with them. And not knowing what Johnny what was going to happen with Johnny. But, you know, making memories is the most important thing, and so I think, in that sense, I think it's brought us closer. And I'm hoping that also my older two See, they see the struggle that I go through every day with Johnny, that, you know what? They got to behave. They got to do good in school. They got to figure out their way, you know, and not be rebellious teenagers and all that stuff, because I don't have tolerance for that.

Scott Benner 41:57
Listen, if any of this happens, I'm driving us all off a bridge, just so, you know, yeah, I know, but, but do you think that they feel ignored?

Jenny 42:07
No, no, no, no, no. Okay, not at all. I mean, there may have been times during the tough treatments and stuff, for sure, I think because my daughter is 18 months older than Johnny, so I'm sure they were, yeah, she was, but I don't, I don't think they feel ignored, because we, you know, we still do. You know, not every we don't sit down at dinner table every day, but at least probably twice a week. And we're always doing fun things as a family. And Jenny,

Scott Benner 42:32
I have to ask you, though, like, you know you're doing fun things as a family, you know, like you're trying to bring your husband along with IB, but do you do something for yourself. Like, do you like, I don't know, shoplift for the thrill. Like, what are you doing? You know? Like, what's your thing?

Jenny 42:48
I don't know. I walk my dog. I walk the dog here and there. Like, I go to work. I don't know. I don't this is my this is my time to be a mom. I mean, well, I like, you know, I'm going, I went saw a salsa concert a couple weeks ago. I'm gonna go see another salsa or, you know, Colombian group with some friends next month. So you do things, yeah? No. I mean, I can we do things like, go get together with friends. I have, you know, friends I get together with co workers to get together with. So I do, I have, like, once a year, a group of girls that will go do a week in a way? Yeah, I'm

Scott Benner 43:22
just trying to figure it out. Because you're not like, you're not striking me as well. What I do, Scott, is massive amounts of cocaine. Like, you know what I mean? Like, like, you're not, you don't seem like you're an escape person. So I'm trying to, like, I'm not really trying to figure it

Jenny 43:36
out for you. I take a lot of naps during the day. I'm a Napper. I'm a lab

Scott Benner 43:41
for people listening who are maybe don't have the same like, I don't know, just whatever it is built into you that lets you go, like, yeah, childhood, leukemia, diabetes, it's fine. Well, like, you know what I mean?

Jenny 43:52
I guess I think, like, we have a, we have a staycation home, you know, I haven't been using it as much with we have a nice pool and all that. Like, I don't know, you just go somewhere and chill out. Just try to chill, try to relax, try to, you know, take things one day at a time.

Scott Benner 44:09
I know you're making it sound incredible.

Jenny 44:12
Well, like I say the Leukemia. I mean, listen that that was tough stuff back then. So I've already been through and back then, yeah, like there were days where I'm crying, I'm holding my child in the Rocky chair. He's feeling sick. He's vomiting on me. I mean, that's the trenches, that's divine and contour, that's grandma grandpa helping my kids see me cry. What are you gonna do? You know, but we're past all that now, and now I'm just so grateful.

Scott Benner 44:38
So time, does heal then,

Jenny 44:41
oh yeah, for sure. I mean, I look back, you know, it's still painful. Sometimes I look back at the pictures for those years to see, you know, he's changed so much. He'd have hair, don't have hair, grow hair. You know, he'd be chubby from steroids, or super skinny back and forth. And. And there's some kind of weird nostalgia with all that I don't know, like I try to just see past and looking I don't know. I'm just grateful,

Scott Benner 45:06
yeah, no, you're actually, you're actually able to see his photos as, like him growing up pictures. Yeah, exactly. That's incredibly healthy. I think we should sample you and figure out, I

Jenny 45:17
mean, yeah, you gotta look at the so silver linings. I think that was one of the things I put in my thing for you. Like, try always look at the silver lining of things. Like, something bad happened. Okay, so this is not where the road we wanted to take, but like, where's the positive in this? You know, right, where can I see something good out of this? Rather than, Oh, this didn't go the way I wanted, I mean, and then, just constantly, my mantra is, like, everything's gonna work out. Everything's gonna work out. Like, I guess that's my coping. It's gonna be okay. Everybody's gonna work out. Do you believe it when you're saying it, yeah, I do, yeah, I do. I mean, yeah, diabetes, diabetes, and all the all the variables, is very testing. You know, like the other day we so we started the Moby, we were using his leg initially with the regular auto, soft XC things, and then I tried it on his belly. Boom, he was sky high. Turns out he had a kinked cannula. Of course, it's like right before bedtime. So then I was able to get some true steel ones from somebody else. I Well, let's put this one in. He didn't really like the needle part. But the good thing about the needle is it doesn't bend right Johnny, you know, let him see the positive. And so the next time we had to change it, he wanted to go back to the other one. So I tried it again, and boom, another bent cannula. So, you know, go through the highs, lead to lows, things and all that.

Scott Benner 46:37
Yeah, you think there'll be a day where you look back on diabetes and and have the same kind of distance that you have now with with leukemia. Uh,

Jenny 46:46
well, you know what I think? Because, I mean, here's another thing, like, we're so lucky. He's, in a sense, heavy, because I listen to a lot of your the night he was diagnosed with diabetes and we were inpatient. We went inpatient for one day to get the teaching. Because they were like, oh, you know your nurse, you could do it outpatient. And was like, no, no, no, I am not a WD.

Scott Benner 47:06
I just kind of watched sleeping babies. So like, hold on, yeah. Like,

Jenny 47:09
admit us to treat us like I don't know anything. I didn't know what a Dexcom was. I didn't know any of this stuff was, and I immediately went to Facebook, because when what got me through cancer was a Facebook group called mom collegey. And I would go there and search, like, how many people had second transplants or whatnot, right? First transplant relapse. I just read through stories and look in the history, and I would just focus on the positive. I'm like, I'm not looking at the negative stuff. I just want to know the positive. Yeah, so that's how I found the Juicebox. And I just started listening right away, I think, just learning through that, but also, like, just knowing, I mean, through the podcast, I learned about all the different pumps and all the different technologies, and he, you know, he came about right after Omnipod five came out. Now there's Moby, and there's just like stuff I feel like constantly coming out. And I don't know if AI one day is going to play a role, but I feel like as he gets older, things will get easier, in a sense, because technology is going to be helpful, so it'll be more manageable, you know, yeah,

Scott Benner 48:15
no, I tend to agree with you. Actually, I've also decided I'm going to call your episode, Three Little Birds. Three Little Birds. What is that? It's the Bob Marley song.

Jenny 48:25
Oh, Three Little Birds. Yep,

Scott Benner 48:28
I was, I sang it to Arden the other night. She was having a tough time. And, you know, with, like with she's really pretty significant needle phobia, and so she had, she had a tough time, and it was over, and we were in the car going to somewhere together, you know, don't worry about a thing. And she, like, looked at me. I was like, because every little thing's gonna be all right. And she's looking at me, like, Oh, great. This is the guy I get to, like, get me through it. I just told her I was, I believe it, though. Like, yeah, I really do. Like, everything, like, until it's over. Everything else you're alive for, so, yeah, you know, a lot of it is, I mean, I mean, don't get me wrong, if you were trapped under a car after an accident, I don't know if everything, a little thing is going to be all right, but yeah, yeah, maybe that's, that's the end for you, right? But, like, Yeah, but up until then, these little things that happen you don't recognize in the moment that a couple of years from now, you might not even think about this anymore. And if you could treat it more like that in the moment, it would be more manageable, I think. And it sounds like that's what you did, yeah, yeah.

Jenny 49:35
Now I'm gonna looking at three pictures in my Three Little Birds hanging on the wall here picture my kids. Now I'm going to call them Three Little Birds. My Three Little Birds. Yeah, I had another name for you. You could also call me an endo mom, oncologist. Do people? No, I didn't know. I was going to know so much about none of people are like, Oh, you could be a, you know, oncology nurse. And I'm like, No way. Now it's like, oh, you can be a, you know, endocrinologist, nurse. Like, no, I just want to be a NICU nurse. Yeah,

Scott Benner 50:08
it's good. Also, I would just like all this to go away, please. Yes,

Jenny 50:11
exactly.

Scott Benner 50:15
There's times where you're like, grateful for the things that you've been able to amass and knowledge. And then there's times where you just wish, like, I wish like, I wish I didn't have to think about any of this. Oh yeah.

Jenny 50:24
I mean, you're, I mean this, I still think about, like, what if none of this ever happened? How would our like be different? You know? Yeah. I mean, it wouldn't be, I don't think it would be that much different. But you know that we may have done more trips International, or, you know what I mean, like different whatever, or who knows, or different sports, or you know, the kids would have, you know,

Scott Benner 50:45
but you don't think about it like in a sad way, though. No,

Jenny 50:49
it's just every once a while, on tough days, things will go by, you know, the thought, but I don't sit there and more mourn or suffer over

Scott Benner 50:57
that. Jenny, you know the person who's had, you've never had depression. Have you no? I've never had depression. You're not an action person either. Are

Jenny 51:04
you no when he No, when he went, when he was diagnosed with leukemia. I did. I did go start to see psychologists and go cry my heart out. But it's also because I needed a doctor notes to be off of work, you know? But

Scott Benner 51:18
well, that actually brings me to a question I've had through this whole thing. Your insurance handled all those treatments? Yeah,

Jenny 51:25
wow. Like you're not allowed to say, am I allowed to say, my insurance? I have great insurance, yeah? Kaiser. Kaiser,

Scott Benner 51:31
well, Kaiser, you're not under a mountain of debt. No,

Jenny 51:34
you know, I think because I'm an employee, and I'm, like, think about it, I'm part time. I work point six employee for Kaiser. I have awesome insurance. I don't pay for anything. My out of pocket for each individual is like 1500 and it's family, 3000 okay? And that's it. And

Scott Benner 51:52
then Kaiser is a health system. Is that, right? Like a hospital health system, yeah?

Jenny 51:55
Like an HMO. And then with all the transplant stuff, like they, you know, we did our own stuff here from Kaiser with our oncology, but then the transplant we go, we go to UCSF for that. Okay, so they, you know, they pay for all that. I know that that's been a blessing. We haven't had that financial stress. I was able to take time off of work. My husband could work from we didn't have that extra burden. Some people go through with cancer. We're financial or lose insurance, or once person has to stop working. Like, we didn't have that, okay, so that was helpful, yeah,

Scott Benner 52:26
but do you think working for a hospital system helped you? Like, do they generally have better insurance? Or is that not always a given?

Jenny 52:33
I don't know. I don't think that's always a given. Okay, okay,

Scott Benner 52:38
all right. I didn't know. Like, that was something that always

Jenny 52:40
happened. Good plan, but I don't know if it's always a given. And, you know, right away we were with the diabetes. They're, they're on, you know, they support technology, like, right away they put a Dexcom on, and it was the first thing they did. We walked in, we were admitted, awesome. So that was, that

Scott Benner 52:59
was good. Did you hear about the podcast because you knew to search Facebook because of your leukemia experience? Or did someone tell you about

Jenny 53:07
because I I looked up? I think that might have been the only one I joined. Maybe I joined another one and I deleted, I don't know, just no because of the moncology that was my support. When I was impatient with him, with all the tough days I would always go to that and read stories. I post things, people respond, you know. So that's what I was looking for, and that's what I found in the Juicebox Podcast. So I don't ever call my Endo. I go straight to the Facebook group and I ask questions there, and then I get an answer in 510, minutes. And it

Scott Benner 53:38
works out for you. Love it. It works out. Tell me if I'm wrong about this. It feels to me like when somebody posts something, you get back enough from enough different people, varying answers that you can kind of cobble it together and then see, basically,

Jenny 53:53
you feel confident in it, because it's not it's it's people with experience that are living it, that are giving you the advice, yeah, you know.

Scott Benner 54:01
And you're able to see something that's maybe cockamamie, and go, Oh, that doesn't I'll push that aside. I'll just take the part, yeah, yeah. You kind

Jenny 54:09
of weed through stuff, sure. Okay, even, you know, people post advice or ask questions and advice. You kind of like, yeah, that doesn't sound right, or, Oh, this sounds right, you know,

Scott Benner 54:17
yeah, no. I mean, listen, it's, I don't listen. I diabetes.

Jenny 54:21
This experience with diabetes would have been, would have been a lot worse, not for you. So thank you so much for what you've done. I'm serious. I would have been a lot harder.

Scott Benner 54:32
I can't I can't let you do that, because you're, I am gonna cry.

Jenny 54:36
You're making me tear up. But no, it I feel like so supported with the community, and it's just at my fingertips, you know. Oh, I'm

Scott Benner 54:44
so happy. So it sounds silly to like, 20 year old me who's listening, yeah, that Facebook group is like, I don't know that I could be prouder of something than that, you know? Oh,

Jenny 54:55
yeah, you should be proud of it. I mean, it's. What I go whenever, when I click on Facebook, that's what I'm looking like. What's new, what's going on. What can I learn? You know, that's awesome. Can I help? Who can I help? How can I help?

Scott Benner 55:07
Yeah, I sent somebody asked me for some examples of what I thought the podcast did for people, and I was able to like just, all I did was just search for a post where people were talking about the podcast, and I like, basically, they're writing reviews in their comments. You don't kind of realize till you see it like that. And as I went through it's, I realized it's adults, it's caregivers, it's young, it's old, it's it's there were comments in there from people who don't have diabetes. Were like, Oh, I found this group. And, you know, my thing lines up enough with diabetes that like it helped me. And I was like, geez, exactly,

Jenny 55:43
you still take you can still learn from it. So didn't expect, no, you've created is amazing, and it's a great legacy for you. Oh,

Scott Benner 55:50
oh, that's lovely. Thank you. Oh, you're very welcome. I'll have Facebook group owner put on my tombstone. There

Jenny 55:55
you go, creator.

Scott Benner 55:58
Thank you. Yeah. So then so the people, like, years from now could walk by and go, Why do you think this was celebrated? And then they can wonder about it all

Jenny 56:06
day. I'm sure there'll be lots of people that come by and put flowers. So

Scott Benner 56:10
that would be lovely. I wish

Jenny 56:13
it's actually one of my posts that I because immediately was, like, told the whole story about, you know, not so much detail about his him having cancer. Girls like, is this a common thing? Who else can I find that had transplants and leukemia, that had diabetes? Now, you know? And you reached out, Hey, if you ever want to be interviewed. And I was, like, interviewed, what? Like, oh, because

Scott Benner 56:34
I figured your story is so unique. Like, it's got to be fairly unique, you know. And like, but, but then there's always someone else who's, you know, like, Oh God, it's too unique. I'm never gonna find anybody with a story. So that's why I would like to, you know, wanted to highlight yours. And I'll tell you even, like, the day I had the girl on who was, like, allergic to insulin, somebody said to me, do you think this is going to be interesting to most people? And I was like, well, first of all, I find everybody's story interesting. But secondly, sure me too, yeah, but somebody else will care. And it wasn't two weeks later that a doctor from like, across the country reached out and said, Hey, I've got a patient here. We've been struggling to help them. I heard your podcast, you know, tell me what they did, because I think that's what's going to help my and by the way, it's helped like, four other people since then. And so

Jenny 57:19
networking community. Really cool, actually. All

Scott Benner 57:23
right. Well, awesome, Jenny, is there anything we haven't talked about that we should have let

Jenny 57:27
me see? I'm kind of had my little notes and stuff, but I don't think so. I think we've covered it all cool.

Scott Benner 57:32
Generally, I'm pretty good at getting through this stuff, yeah, but I worry. I mean, I was

Jenny 57:37
nervous for sure, were you? But, oh, I get nervous about stuff like this, but I was excited too, so and I feel like I've been I've known you for a long time, because I hear your voice all the

Scott Benner 57:48
time. Jenny, we're friends. That's fine. We're friends, yeah, yes, as long as you don't show up at my house and kill me, you and I know each other, and that's fine.

Jenny 57:56
I'm not I'm not gonna go to jail for everything I've been through. No way

Scott Benner 57:59
my son, my son, is always like, one of those people is going to kill you one day. And I'm like, why don't Don't say that. Like, I'm sure that's not going to happen. He goes, Okay, I don't think so. You know, I told him. I'm like, we have respect for you. Okay, you're very nice. Just a great percentage of the people I meet are just so wonderful. Like, really, really, just 99.9% of you guys are just, you're awesome. And even some of you that are weird, like, I even, like, you know, yeah,

Jenny 58:27
I get it. I love listening to all the different stories, all of it.

Scott Benner 58:30
I do too. Actually, I I found myself reminiscing today, because this is the, this is like, I'm finishing up recording the 10th season of the podcast right now. And I looked at my schedule into 2025, and it's already full, like, into, like, the first four months, yeah, for recording. And I thought, I'm gonna make this podcast forever, if I can.

Jenny 58:51
You could, because there's always more people, there's more stories, there's more that, you know, even the technology, the pumps, there's just so many things that are constantly going to be evolving. You totally could. And the story, stories, and you can, actually, you can have people come back right and tell stories. And that's

Scott Benner 59:07
the interesting thing, because people come back on and I won't remember them, so it'll be perfect, because I'm my memory is so terrible, like, I feel like I'm the same now, the whole thing just is like a it's like a stew almost. You know what I mean, like, at some point I'm just like, This is good. I don't even know what's in it, yeah, but, but I know. But I know, if it was missing something, it wouldn't be as good, you know? So anyway, all right, well, I'm down. I'm calling this Three Little Birds. All right,

Jenny 59:34
Three Little Birds. Thank you. You just renamed my kids. Now they're my Three Little Birds. Well,

Scott Benner 59:38
great. If they don't like that, they're gonna blame me, so it's okay.

Jenny 59:41
Well, maybe they'll come kill you, right? My mom called me a bird because of you. Can

Scott Benner 59:46
you imagine if that's the last thing I hear? Actually,

Jenny 59:50
no, maybe, maybe one, one year I'll dress him up as birds for Halloween. Oh, my

Scott Benner 59:54
God. I'm just imagining myself running down an alley with like a 25 year old going, hey, thanks. A lot, buddy,

Jenny 1:00:00
yeah.

Scott Benner 1:00:03
Thank you so much. No, Jen, it's my pleasure. You were terrific. Thank you. Hold on one second. Okay,

thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox this episode of The Juicebox Podcast is sponsored by cozy Earth. Cozy earth.com use the offer code juice box at checkout to save 40% off of the clothing, towels, sheets, off of everything they have at cozy earth.com if you're living with type one diabetes, the after dark collection from the Juicebox Podcast is the only place to hear the stories that no one else talks about, from drugs to depression, self harm, trauma, addiction and so much more. Go to Juicebox podcast.com up in the menu and click on after dark there, you'll see a full list of all of the after dark episodes. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording, doing his magic to these files. So if you want him to do his magic to you, wrong way, recording.com, you got a podcast. You want somebody to edit it. You want rob you.