#1641 Lyla's Story

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Trigger Warning: John is here to tell us about his daughter, Lyla, who was recently lost to undiagnosed T1D. If you're not prepared to deal with the emotions that are going to come with a raw and honest conversation about losing a child, please consider skipping this episode.

UK Petition: https://petition.parliament.uk/petitions/728677

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
John's story is today's guest. He's here to tell us about his daughter, Lila, who was recently lost to undiagnosed type one diabetes. John will share stories about Lila and his desire for this not to happen to someone else's child, if you're not prepared to deal with the emotions that are going to come with a raw and honest conversation about losing a child, please consider skipping this episode

while you're listening. Please remember 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 healthcare plan or becoming bold with insulin. If you're a citizen of the United Kingdom, please consider signing John's petition for funding so all infants are offered type one diabetes testing in routine care. I'll have a link in the show notes and a link at Juicebox podcast.com if you're interested in learning more and adding your signature.

Today's episode is sponsored by Medtronic diabetes and the contour next gen blood glucose meter. Learn more about Medtronic devices at Medtronic diabetes.com/juicebox and dig into all the contour has to offer at contour, next.com/juicebox

Speaker 1 1:41
you Hi,

Scott Benner 1:53
Scott.

John Story 1:54
My name is John story, I'm from Kingston upon hull in England, in Yorkshire, and I am the father of Lila's story,

Scott Benner 2:02
John, it's nice to meet you. I really do appreciate you doing this with me. Thank you. Yeah, that's right. So it's a pleasure to have you here. I'm sorry. I think we're going to probably just jump right in any other small talk will, I think seem trivial very quickly. Why don't you tell me why you're here and what led you to this place? Right?

John Story 2:21
Well, the reason I'm here today and again, thank you for having me on the pod. Like I said, I've heard good things about you. Thank you and the Juicebox podcast and you know, we send our love from across the pond, but basically, the reason I'm on here today is to discuss Lila, our beautiful daughter. I do apologize if I get emotional during the pod, because it is still quite raw. So you might want to come with a trigger warning.

Scott Benner 2:45
Listen, I'm going to cry if you cry. John, just so you know. So how long ago did all this happen? Well, basically,

John Story 2:54
let me tell you about Lila first. I think it's, I think it's important to let people know. Sort of person Lila was born on the 11th of April 2023 a day before my birthday and a day after her Auntie's birthday. She was lovely, beautiful. She was very advanced. She could count well into her 20s. At the age of two, she was stringing sentences together. She was kind, caring, sharing. She loved all creatures, even the creepy crawlies like spiders and things like that. She loved flowers, sunflowers, pink and yellow roses. And she got all the caring and compassionate side from her mother, my lovely wife, Emma. But she also had a sassy side to her too. She was very independent. She was very good at sussing people out, you know, checking them over before she, you know, let them in, sort of thing. And she had a I don't give a sh 1t attitude she got, definitely got that off her father. She was, she was adorable, and, you know, she,

Scott Benner 4:05
she wouldn't hurt a fly. Lila turned to, obviously, in April this year,

John Story 4:14
and in the last week of April, going into May. And so from the 28th of April, we in the in the night, we noticed that Lila had woke up in the middle of the night, and she was, she was a bit rosy cheeked, you know, and Emma checked her over, and it seemed apparent that she was getting her back teeth coming through. That's why she was a bit sniffly and a bit rosy cheek. So we gave her a bit of, don't know how what you guys have in America, but over here, we call it Cal Poly, which seems to be the answer to everything. It's like a children a baby's children's paracetamol. So give her a bit of Cal Poly, and she fell back asleep again. She woke up on a Tuesday, right as rain. Had some breakfast. And went to nursery. And she'd only started nursery, or kindergarten, as you guys call it, on the 22nd of April. She went to nursery. She was absolutely fine. Came home again, fine, went to bed, went to sleep, gets up on the Wednesday, again, she's fine. When she came home, we noticed that she started having a few more wet nappies or diapers, and when she was sat with me, I noticed at one point that a nappy had burst. I thought that's unusual.

Scott Benner 5:37
She's weeing quite a lot. We

John Story 5:39
get to the fair and she looked, she looks quite tired, so we had on the side of caution, and thought, right, well, if she's like this, in the morning, we will take her into nursery, and you know, if she hasn't improved, we'll, we'll call the doctor, basically, right? She gets up on the Thursday, she gets up. She didn't really want anything solid to eat. And we thought, well, that's okay, because she's with she's teething and all the rest of it. So she had some yogurt and a bit of fruit, went off to nursery, okay, and seemed fine when she got dropped off at the nursery. And unbeknownst to me, my mum came home, because my mum used to pick Lila up from nursery and our son Jack. Our son, Jack's only four himself, and he's just started preschool. And my mum brought around the corner, and we always used to greet Jack and Lila as they came around the door with her. Ah, yeah. How you you know? Hi. How are you doing? You know. And then they both look at me and run straight to the mum and Lila came around the door, and I have to say, Scott, I was frightened. I saw her, and she'd lost weight, she'd look gone. And I was like, Nah, I won't swear, but I said, you know, said to Emma, and my mom said, Something effing wrong with her,

Scott Benner 6:59
and I'm the the biggest kind of

John Story 7:04
scaredy cat when it comes to my children. You know, ordinarily, if they bump the head or the trap the finger in a in a door, like, you know, like little kids do, I'd scream and go get that kid to hospital now, but for some reason, I just said, ring the doctor. She needs to get to doctors. We secured her an appointment for the following day. I have to be careful what to say, because she's got an inquest coming up on the 16th of September. But I know my mother and my wife took Lila to the doctors, and they explained the symptoms. She threw up three times that morning, you know, vomited three times, and the third time was in, actually, in the surgery. And my mother pointed out that's the third time today she's been sick. So obviously, Emma and my mum went in with Lily to the doctors, explained that she's having more wet nappies. She's been lethargic. She's not been a normal self. Obviously, she's vomiting. She hasn't had a bowel movement since the Tuesday, Tuesday night, and she appears to have lost weight overnight. And she's she's drinking a lot more. She's and my mother interjected and said she's actually asking for water. Now, what two year old asked for water. It's all about juice, innit. Now, I've had it drummed into me over the years say, don't look at Dr Google. Don't look at Dr Google. You know, I wish I did, because the doctor just checked the vitals and surmised that all she had was tonsillitis. We brought her home, Emma took her to bed quite early, but we made we made a decision that Emma would stay in bed with Lila in our bed, and I said, That's okay. I'll sleep downstairs on my recliner chair periodically as I carried her up to bed. Oh, that's another thing I forgot to mention. She stopped talking on the Thursday. Now I thought I was frightened to death at the time that she'd all of a sudden gone from somebody so bright and vibrant to someone that's gone completely non verbal. When we got told she had tonsillitis, it kind of changed our perceptions of care for Lila, because the doctor said if, if she hadn't got better within 24 hours, then call 111, which is like the quieter version of 999, or 911 you know, it's like ringing up. I've just got a concern, you know. So okay, and then they give you advice accordingly. We were relieved that we you knew it was translated, and she was prescribed something called amoxicillin, which is basically penicillin for kids. It's like that banana flavored stuff you get. We started giving her that, and then said, carry on giving her children's paracetamol. Obviously, what's, what's in children's what's children's paracetamol, full of sugar. I started carrying her up to bed. And. She started shouting, mummy, mummy, mummy. We thought, we thought, excellent. She's talking. She's talking again. She's, you know, she's articulating again. That's brilliant. Went to bed. I last checked on Emma and Lila at about 8pm and Lila was sleep. While Lila was sleeping, she was making a little arring noise, and again, we attributed that to the fact that she's articulating that the tonsils are hurting, but no more of it. Emma checked on her again at 10 o'clock, still breathing, still temp. Last checked on her at quarter two in the morning, still breathing, still temper. Up. I wake up about quarter four come to bed. About quarter past four in the morning,

Scott Benner 10:45
I got into the bed.

John Story 10:48
I moved later because she was like before she was sleeping in a horizontal position. I moved her from my nappy.

Scott Benner 10:54
For some reason, I lay in bed, and

John Story 10:59
next thing I know, I felt something cold against me, and I thought it was Lila's

Scott Benner 11:04
milk bottle, but

John Story 11:07
it wasn't. It was her arm, and she was freezing. She'd already gone. So I think in that three quarters of an hour where, three quarters of an hour where Emma had last checked on her, I think she'd slipped into a coma, and just passed. Even our dog was in the room. We got a border we got a border collie. We know if Lila would have suffered at any point, the dog would have been leaping on the bed, jumping all over Emma to get her up, you know.

Scott Benner 11:30
And, yeah, she just literally passed in very quickly, yeah. So, you know, we, John, take us. Take a second. It's okay. You can collect yourself. It's fine. I want you to know that when, when someone reached out to me to have you on I had no idea this was also fresh in your life. I really didn't. Are we talking about five months ago?

John Story 11:57
Just over four months now, four months ago? Okay, yeah, yeah, she she passed away on Third of May. We even said when was at the hospital, because whilst I was trying to resuscitate her, we even said, you know, when she was officially pronounced, asked how, when we when my wife and my mother went to the GPS and said she's got this, this, this, and this, did she only surmise it was tonsillitis, yeah.

Scott Benner 12:30
And obviously, that's what, that's basically what happened. Naturally, we're devastated. But Hey, John, this is more common than you think. I know that obviously type one diabetes is not a thing you were aware of prior to that. Absolutely not, yeah, but I can tell you that misdiagnosis is at this point are fairly common, and even the things that you describe that you saw, but you know, didn't know what to make of it. All that is incredibly common. I know that's I don't believe anything I'm going to say to you is going to be comforting. But no, no, yeah, but I can tell you that. You know, my daughter was diagnosed when she was two, and, yeah, just after her second birthday. As a matter of fact, my wife and I saw signs, and, you know, we look stared at her for a long time, too, weight loss, wetting her diapers. She's like, voraciously hungry, but not going to the bathroom, like anything you probably experienced with your dear Lila. I imagine I experienced with my daughter, and my wife did too, and we just happened to have a moment where it just struck us that we thought it was diabetes that was really it. Yeah, we didn't know either. And took her to the hospital, and they told us this, that, you know, she was very probably 24 hours away from where your daughter was, and to later say that I did something right or you did something wrong is ridiculous. We got lucky and you didn't.

John Story 14:11
We were, you know, yeah, that's, that's part of the, one of the things that resonated with when I first heard about you, and the reason that you set up the podcast was because Lila was three weeks into a second birthday. And yeah, and I just, I can't believe how people just don't actively listen anymore when you display and there's so many stories of you're an overprotective mother, or you can't have diabetes because you're fit or you're well, or you can't because there's no history in the family. That's, I mean, that irrelevant question that GPS ask, is there a history of diabetes in the family? Well, 80% of newly diagnosed people with type one diabetes are. Babies to it themselves. You know, it's just one of them things. It's you ever get it or you don't, you know? I mean, it can run in families, obviously, but 80% of new cases are like that. And what happened, Scott was in the aftermath of flyers passing, you know, I said, I'm, I'm gonna sorry. I said I'm gonna fight for every Barber of my being to for change, because all of a sudden it got so strange online, on Facebook and things like that, it almost became like a me too. Thing people was reaching out and saying, Look, same thing that happened to us. And the only difference between you and my daughter or my son was when I woke up in the morning, my child was barely breathing.

Scott Benner 15:42
Yours just, yeah, it just happened faster or bad time, even just that you were asleep. I mean, John, there's, there's no way to make sense of it. Really, it's

John Story 15:53
well with with Lila as well she got, we found out on the interim death certificate that not only did she have undiagnosed type one, and obviously she died of diabetic ketoacidosis, but she had a gastrointestinal bleed and covid 19. So we think what's happened is that sniffle that she had on the Monday and the rosy cheeks, we think that was the start of covid. And what's happened, we think, is it's attack to pancreas, because you know what covid can do. It can attack any part of your body. You can get cases of people getting covered, and it just doesn't touch the sides. And you're like, what's this? But then you can get one case of covid, and you can just attack the wrong part of you. And then it's critical. So with Lila, it happened so rapidly. But the people that have been reaching out to me, this is just from people in the United Kingdom. I've had about 220 emails so far. Of them, 220 emails. Only two have been diagnosed the initial point of contact with the GP. The rest have been diagnosed in critical care.

Scott Benner 16:59
Yeah, that's pretty much how it works. And there's, you know, there's, it's, it's such a tough thing to talk about, because as you're sitting here, probably all you can think about is somebody would have just checked her blood sugar in the office. You would have known days before, and they would have very likely been able to help her. And you're going to hear people make the counter argument, which is, you know, for every kid that comes in in your daughter's situation, there's probably 1000 of them that don't have diabetes. And then, yeah, yeah, and it's not of any comfort to you or or any reason not to do that finger stick and help the few that are in that situation. I've, you know, had this conversation over and over again with people over the years, and I can see both sides of why it happens and why it why it doesn't happen, or why it should happen and why it doesn't happen. Yeah, I can't tell you how sorry. I mean, honestly, all I can think about sitting here is giving my daughter a hug when she gets home, you know? And, yeah, even that feels terrible to say out loud right now while I'm speaking to you, 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/juicebox the contour next gen blood glucose meter is sponsoring this episode of The Juicebox podcast, and it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your Insurance Company. That's right. If you go to my link, contour next.com/juicebox you're going to find links to Walmart, Amazon, Walgreens, CVS, Rite, aid, Kroger and Meijer. You could be paying more right now through your insurance for your test strips and meter. Then you would pay through my link for the contour next gen and contour next test strips in cash. What am I saying? My link may be cheaper out of your pocket than you're paying right now, even with your insurance. And I don't know what meter you have right now. I can't say that, but what I can say for sure is that the contour next gen meter. Meter is accurate. It is reliable, and it is the meter that we've been using for years. Contour next.com/juicebox, and if you already have a contour meter and you're buying test strips, doing so through the Juicebox podcast link will help to support the show

John Story 20:16
now, Scott, I've been saying I've been saying that to people every time I've had an email come through it the so the emails that I get sent us are so traumatic for themselves, and they're incredibly brave for writing to me, you know. And you know, I keep asking people just just send them, because change needs to happen. And I do say to them, just give your daughter or your son a massive cuddle from us, you know,

Scott Benner 20:39
I agree, a little finger prick cost pennies.

John Story 20:47
Getting diagnosed in critical care costs hundreds of 1000s, you know, to the National Health Service. God knows what it's like in your country where your insurance system and everything you know how much I mean. I mean money costs nothing. Money means nothing when you saving your child, obviously. But I think what the UK government don't understand all the NHS don't understand is, you know, if you do this little finger prick test and you get, you get people out there that say, well, it's traumatic to the child. Give over. Don't be silly. You know, give them a lollipop afterwards. You know, they'll be, you know that they'll be absolutely fine. It's, it's, you know, you get, you get your your jabs when you're a baby that makes them cry. What difference does it make? Just a little finger prick. Not that anybody wants type one diabetes, obviously. But the earlier someone gets diagnosed, the easier it is for that person to manage the condition safely. You know, if you diagnose a DKA, it can be, it can be much more difficult to manage your blood glucose levels, and not only that, it can cause organ failure, developmental delay. I mean, I'm a rehab officer for visually impaired people, so basically, I help restore the skills of people with visual impairment, and obviously one of them conditions is like diabetic retinopathy or maculopathy, people don't understand how serious it is. And it's not just a physical impact it has on people, the patient themselves, but it's the emotional impact

Scott Benner 22:19
of going through on the

John Story 22:20
person and and the family is the ripple effect it causes, and the parental guilt, it's horrible,

Scott Benner 22:28
right? Yet, no, there's, there's no argument for not knowing sooner. Knowing sooner is just always going to be better. So John, if we can, I don't know if we're really pivoting, but, but to to leave her story there for a second, and we'll come back to it. And what you're trying to accomplish. Would you mind if I asked you some stuff personally, I'm I'm interested to know. I mean, you're a pretty young family, right? You had a four year old and a two year old. How long have you been married? How old are you? How old is your wife? Funny story, just I'm late. Really strange.

John Story 23:00
Actually, I'm Emma on a dating app called Bumble. I don't know if you've heard of it, I have. We first met, we went for a coffee on our first date. We got chat in we we really enjoyed each other's company on the way up the coffee house, I said to Emma, do you mind, you know, do you mind if I see you again? And she said, yeah, yeah, I'd love to. So don't you mind if I give you a kiss, you know, on the cheek, a little peck on the cheek, sort of things went, Yeah, okay. And at that point, I slipped on the doorstep. I fell forward, and I had butted. I thought, There's no way she's No way. She's gonna say no now. And then we, obviously, we fell in love. And then we Jack came along in 2020, he was a covid baby, and there was a lot of trials and tribulation with that as well, because I couldn't be present at the scans and things like that. So that was a bit heart wrenching. But when Lila came along, found out Lila was pregnant. Sorry, Emma was pregnant with Lila when I was about to start university to do a degree apprenticeship in rehabilitation visually impaired. I asked Emma, do you want me to defer? She went, No, you'll go for it, because it's for our family. Lila came along two months before me and Emma got married in 2023 so she was the youngest bridesmaid in town. And, yeah, the dynamic. It was it. It was the perfect dynamic. I mean, our children have wanted for nothing. We've done nothing but protect them throughout their lives. You know, whenever the chips are down, we're there for them,

Scott Benner 24:36
then something comes along that you just can't really you can't protect them from Exactly, yeah, I mean, Emma, at the moment, she's,

John Story 24:49
I mean, Emma lives with anxiety. Diagnose anxiety. She's usually the crier of us too, you know, she's the one that does the crying. You know, I. You only have to say boo to her sometimes she's so consumed with anger at the moment.

Scott Benner 25:06
Well, that's my question to you, really is that, how has this impacted you and her and

John Story 25:10
Jack, in all honesty, it's made us stronger as a group, as a family dynamic. Jack, he's going to get some early help from the local Family Hub center, Jack was asking questions when Lila first passed, about where's Lila's body, where's Lila's head?

Scott Benner 25:30
All right, the poor lad, the poor boy, doesn't

John Story 25:36
know what to say. I mean, when we when we had to sit him down, I sat him on my knee, and then we sat him in between me and Emma, and we said, We've got to say something to Jack now that's going to impact him for the rest of his life. So I formed my feet, and I thought I did okay, but said, Look, you know, when the ambulance people took liners to hospital said, unfortunately,

Scott Benner 26:01
she she was too

John Story 26:03
she was just too little, and a little body, a little heart, couldn't take it anymore. I said, before she went up to heaven with the angels, she told us something on the way up. She said, Oh, what?

Scott Benner 26:17
I said that she's left. She's left, mommy, her eyes, um, she's left daddy, her heart, she and she's left for you.

John Story 26:28
Her courage. She said, What's courage? I said, bravery to be brave. And, and she's left you where shadow she's always with, yeah, all

Scott Benner 26:40
right, John, you did a good job. Man, that was great. That's

John Story 26:42
That's lovely. I know, I know. I mean, I don't know if people believe in God or Heaven or anything. That's people can have their beliefs. That's absolutely fine. You know, I've got no qualms with that. But I think when you're a child, you need to teach that child that there is a better place to go to, and you know, and you also teach them to respect the police and respect people in uniform, like the fire service, you know. And you know you Jeep at your doctor and and things like that. And it was only until because Jack thought she'd died at tonsillitis. A week after Lila died, he got the chickenpox, and the first question he asked me was, daddy, yeah, am I going to die? Oh, jeez, I said, No, you're not gonna die, son, you're not gonna die. So we we we told him when he broke off from nursery kindergarten, we sat him down and we explained to him that Lila didn't die of tonsillitis, that she did have tonsillitis, but she died of something called diabetes. And I tried to explain what diabetes was in layman's terms, but to talk about Peter cells and pancreatic failure and things like that to a four year old is no use, no ornament. So I just said he had, she had so much sugar and she couldn't burn it off, you know, because that was the only way you could really explain it to him, with him being four years old. Well, yeah, I mean, there's

Scott Benner 28:15
no, I mean, there's not a lot of good ways to explain something that's serious or finite to a four year old. I think he did a nice job. I mean, I'm sure it's going to be a thing that is going to come up over and over again. You're probably going to have to redefine for him as he gets older. And truth be told, you might have different perspectives as time moves on as well that you'll share with him.

John Story 28:37
Indeed, indeed. I mean, we didn't say at the time that. We just said that the end of the day, when we went to the doctors, the doctor didn't spot that she had it. And, you know, I did say that doctor was naughty or anything like that, you know, right? Well, I didn't want to play a blame game or anything like that, because I didn't want him having I didn't want him to lose faith in the in in the health system.

Scott Benner 28:58
But do you do you have those feelings? John, does your wife feel that way? Yeah, we do at the moment.

John Story 29:04
Yeah, we do. We feel badly let down. Obviously, again, we can't go too much into it, because we've got the inquest coming up, but we feel that. I don't know if you know much about the healthcare system in England at the moment, but primary care, that's your GPS and your district nursing and things like that, it seems to becoming more of a business now than what people actually signed up for, you know, which was to work with people with dignity, empathy and, most importantly, care. I just think that the country itself were, you know, across the pond we're running, we're only a tiny island really, but we've got 80 million people living in it. You know, that's a lot of people for a small island. And I think, as time's gone on, the NHS is a wonderful system, but I genuinely think it's broken because we haven't got enough infrastructure there in. A structure there to support the needs of people anymore, and I think that reflects when you're visiting a doctor, because it's like, I don't know if you're like me, Scott, but for me to go to the doctor myself, personally, I've got to have about four or five things wrong with me before I go, because I'm pre I'm a proud man,

Scott Benner 30:21
but if you go there,

John Story 30:25
you talk about more than two things. The basically talk to the hand, the face. Ain't listening. It's like, I can talk to you about these two things today. If you want to talk about the others, you need to book another appointment now. And that's quite a poignant comment, because the signs of type one diabetes are four T's. You've got four things going on, you know, and particularly with children, you can't mess about with children. You can't grant a child a seven minute appointment, because that's on average, that's how long you are in with the doctor. Now, in Indy, did Lila have tonsillitis? She did, but this is the irony. She was prescribed penicillin for tonsillitis. Now, penicillin is an antibiotic. It's to treat bacterial tonsillitis. She actually had viral tonsillitis.

Scott Benner 31:15
Yeah, they don't know. They're just guessing when they do that, if they don't think, if they don't do the test. So you think the doctor saw the tonsillitis and was like, Well, this is obviously the problem, and just didn't look

John Story 31:25
any further. I'm satisfied. Yeah, yeah, I think she saw that. I'm satisfied that she's got that. I mean, she checked her vitals, you know, she checked her oxygen levels and things like that. She said that a pulse was a bit fast, but that's normal if she's got a virus or what have you, but looking back now, I've one of lions godfathers. He was a medic in the paratroopers, and he said, the reason that we know, we now know that their pulse was getting faster because she was going into diabetic shock.

Scott Benner 31:55
Yeah, the ketoacidosis is there? Yeah, yeah, the DK is it's. It's a devastating thing. I just interviewed a woman recently whose daughter, even after they finally did figure out that she had diabetes, and she was on a week long journey like you were, where they kept missing it. He has permanent damage now through her esophagus. And you know, she was, she was vomiting up dead tissue from the dka, and it's, it can be devastating in many different

John Story 32:23
ways. Send my love to that family will. Yeah, of course, of course.

Scott Benner 32:27
So John, I mean, you're in the middle of your grief, your wife you described as angry. Is there something you're trying to do with all this? Like, I mean, I don't understand. I mean, you are in the position that every one of us finds ourselves in, we don't know what we would do if this happened to us. Right? So what is it you're doing with all this, the grief and the anger, and I'm assuming the hopelessness that you feel right now, where you're trying to focus it,

John Story 32:51
I'm trying to turn it into a positive I think Lila would want me to fight for the children of the United Kingdom, if not the world. I think the world needs to know about Lila's story, because if it's happening in the UK, it must be happening in other places. So basically, I've, I've started a campaign called Lila's law in the United Kingdom. I've just noticed as well recently that there's another, there was another Lila's law campaign going on in America is over something really horrible and harrowing that happened to a child in the United States. Completely different subject matter, and I won't go into that, so you can google what's going on there. But, but basically with Lila's law, it would ensure that routine diabetes testing, urine and blood for children presenting with relevant symptoms of the four T's, any of the four T's, because if you look, I don't know if you have something similar in the in the US, but there's something in the UK called fast. It's symptoms of stroke. And if there's display in any one of them, symptoms of fast, F, A, S, T, face, arms, yada yada. Any one of them symptoms, the doctor goes straight to hospital with you. Why aren't they doing that with other things? Type one? Yeah. And for some reason I think, look, not that type two isn't dangerous, but I think a lot of the focus is going on to type two now, because of the obesity rates and everything. There's a lot more people getting Type Two Diabetes now, and I think it's putting type one to the back of the queue. We know that type one, you've got to act fast with type one, because it's a silent killer. You know, Lila's law would also ensure greater awareness and adherence to what we call NICE guidelines among healthcare professionals. So like every practitioner has guidelines, the tragedy is the don't tend to follow them or protection of vulnerable children who cannot articulate their symptoms. I mean, if looking In Lila's case, she was bright, she was articulate. But we know. Know that the reason she stopped talking on the Thursday was because she was desperately trying to reserve her energy. Yeah, I knew nothing about type one diabetes before lighter pass. I learned very quickly afterwards. You know, we are also advocating for inclusion of type one diabetes information in what you call the Red Book. Now, the Red Book in the UK is basically what health visitors have and provide a mother with. And in that red book, it tells you about certain conditions to look out for. And I think because it it's becoming more pre type ones becoming more prevalent, I think it's important for them to include it in the Red Book. And the reason I'm saying things like that is because

Scott Benner 35:41
I think education around the matter is desperately poor among GPS themselves,

John Story 35:53
because I got told by a prominent member of the NHS that GPS in the United Kingdom diagnose an average of one persons in their career with type one, yeah, because

Scott Benner 36:09
it's so infrequent, or because they don't catch it as much.

John Story 36:13
The answer to that, I don't know, but put it this way, there is over 400,000 people in the United Kingdom, at the last estimate, living with T 1d of them, 400,000 people. 38% have been diagnosed at the point of DKA, that sort of that's just under half. It's not good enough.

Scott Benner 36:34
Now the

John Story 36:35
education around the matter in primary care is, is clearly not good enough. And also, I admit myself, I think education among the general public, your public, you know, that is not good enough and and it's there's also misconceptions around type one. You know, it's like, maybe it's because your child's eating so much sugar, that's rubbish. A child could live on sugar and not catch type one. But something quite key. I said to somebody recently was, the 4t is a wonderful concept. The only downside is it's quite some controversial but knowledge of the 4t is quite a tribal thing, in essence, because think the only people that really know about the 4t are those that are either directly or indirectly affected by the condition, and I think anybody that has no knowledge of it, it's all or doesn't have friends with it or family with it. You ask someone about the four T's, they're like, what's that? And that's why I think if you get education amongst the general public as well. When you send your child to the doctors, you say, My child is weighing more. My child is tired all the time. My child has lost weight and my child's constantly thirsty. I think my child has type one diabetes, and that plants a seed in the head of the doctor to say, I would like you to perform a test. So if you've got that work in both ways, the twins you'll meet, you know, but there's too much ignorance from GPS. And I've seen a lot of this. I might have repeated this already, but you see a lot of this from the emails I've received, it's like, well, you know, now you've got no history, so you will have it. It's just a virus. Stop being overprotective, you know? Yeah. And this has been going on to over 40 years, because one of my best friends has type one diabetes, and he went from a similar experience to Lila and me. He said to me, when Lila first passed, he said, I thought I was the only one, and it's 2025 Why is this still happening? It's not 22 it's not 1921 anymore.

Scott Benner 38:52
Your friend had a similar situation. Yeah.

John Story 38:55
Well, he what happened with him? He'll be happy for me to discuss it. He got many when he was 18 months old, he got meningitis, and he was admitted to hospital, spent three weeks in hospital, came home, and then a few months after that, he started displaying the four T's. It was kind of like, so it's just the after effects of the meningitis. It's just this, it's just that, Oh, stop being over protective, Mum. He's just getting over the meningitis. Blah, blah, blah, 10, and he was lucky enough to visit a GP who lives with the condition himself. He took one look at him and said, right, recognize that we need to get we need to get him to hospital, get him on a program of diabetes.

Scott Benner 39:34
John, it occurs to me because you're in England, and a lot of people will hear this in other places, four T's, toilet, thirsty, tired, fitter, right? Exactly? Yeah, okay. I just, we kept saying it. I thought maybe we should make sure everybody knows what it means.

John Story 39:46
Just to clarify, yeah, I did start a YouTube video shortly after Lyle the past, because I think it's, it's and you'll probably agree with this. Scott mentioned more about along the lines of looking out for the signs in babies and toddlers. Yes, if they're having more wet nappies, it might sound disgusting, but smell them. I don't know if you have something called Sugar Puffs in America, but they're like a breakfast cereal, and the smell the really sweet, almost like a popcorn smell. Sure if they're nappy or their diaper smells of popcorn. Just go to the hospital, if the breath smells like pear drops, take them to hospital, you know, like that sickly sweet smell on the breath. Now, we didn't even experience that with Lila, you know, the smell on the breath, but that's a sign,

Scott Benner 40:32
you know, that's one of the ways we figured out my daughter's situation. Was it? Yeah, the breath, you could just smell fruity. What is it? You actually smell like acetone or something like that? I'm not sure.

John Story 40:44
What is the basically, it's the ketones trying to get out the system, isn't it? You know? So, I mean, when Lila died, or HB one Ac levels was 89 over double the threshold, and her ketone level was at six. Now, the medical emergency is is three, you know, because it's on like, a scale of one to 10. I've seen people going to Makita on levels of eight, you know. And it's just crazy. So the YouTube video was mainly around checking for signs in toddlers and babies, because obviously they can advocate for themselves. So look out for these. And fortunately for you, Scott, you got that fruit you smell on the breath. Had you not got that? Yeah, you could be in a different situation yourself.

Scott Benner 41:31
John, I mean, it's it hasn't been lost on me for all those these years that we could have missed a couple of these things, and Arden's outcome could have been much different. But talking to you about it brings it, you know, very forward for me right now, sitting here thinking it's hard not to be hard, not to put myself in your position and wonder what would have happened if another day would have gone by

John Story 41:53
Exactly, exactly. And you know, your lovely daughters come out the other end. And you know, I hope she's thriving. She's doing pretty good. Thank you. How old she, how was she now? Scott, she just turned 21 wow, wow. She, I bet she advocates for T 1d, community as well, didn't she?

Scott Benner 42:10
She does her stuff kind of quietly about diabetes. I think maybe I'm the one that's more out front, but she's got her things she's involved in. It's also not a, not a huge part of her day to day life. You know, it's a thing she, I think, manages pretty well and lives with pretty well.

John Story 42:25
Thinking, I don't know, I mean, I don't want to speak on on behalf of or anything, but I think, I think with in her situation, I think it's she's probably never known any different.

Scott Benner 42:35
That's pretty true. It doesn't stop it from being burdensome, but definitely doesn't have a ton to draw on that isn't diabetes,

John Story 42:43
yeah, yeah. I mean, imagine I feel sorry for anybody that I have a degree of empath. Feeling sorry is not the right word. Jennifer is, but I have a degree of, I have empathy for everybody that that lives with the condition and and their daily struggle. But I can imagine, could you imagine getting it, getting it when he was, like, 14 or 15. And I think, you know, shocking for teenagers as

Scott Benner 43:06
it is, yeah, yeah. No, trust me, I believe that no matter what age you are, it's shocking and life altering. It just, it just really is anything chronic, which is now, you know, John, I mean, I'm certainly not a friend or somebody who has any right to be worried about you. But are you guys doing something? I mean, I love what you're doing, you know, for Lila's memory and for other people, but it mean, it occurs to me that, you know, if diabetes is a chronic illness that's going to take people a lifetime to deal with, I would imagine that losing a child is the same thing, right? This is not a thing that you're just gonna wake up one day and it's not just gonna be gone, yeah. How old are you? Did I ask you? I'm 44 now, 44 you have a long time left, you know, knock on wood, right? So you're raising Jack, right? He's four. So, like, how do you how do you make all this livable? Is livable the right word,

John Story 44:05
I'll be honest with you, Scott, I think if it wasn't for Jack, we'd have probably drunk ourselves into oblivion. Or Jack keeps us going. Our dog keeps us going. The love is still there in the family. You know we Lila comes to me in my dream. She never, ever came to me in my dreams, and then she does now, and we're going through counseling at the moment. You know, I wake up at key trigger points. The subconscious isn't turning off when I go to sleep. I wake up at half past two, which is when we believe she probably passed in the morning, I wake up at half past four, which is when we set off to the hospital with her, and I wake up at 25 past five in the morning, and she can't get back to sleep. But what we do is we have a ritual. We've got we've put a lovely little bench outside our our front garden. We've planted rose bushes for every. Morning we open a bedroom door and say, Good morning, darling. So we're just I know this might sound silly to you, but

Scott Benner 45:07
it's a big thing to us. So yeah, we

John Story 45:11
we have coping mechanisms. We tell each other we love each other every day. Our Jack keeps us on on his toes, and he still makes us laugh every day. And I think our jack is going to turn into a fine young man.

Scott Benner 45:27
I think even if Lila had survived,

John Story 45:30
I know she'd have been an advocate for the T 1d community, she'd have been on the campaign trail with me when she got old enough. And one thing I must say, Scott is somebody said to me, when I was going on Facebook and saying, Look, I'm starting this campaign called Lila's law, someone said, You know what, John, you need to think about a spot to do. You need to go on tick tock. And I'm like, I'm 44 I'm 44 years old. I I can't be I can't be dicking about in videos and things like that. No, but that's where you seem to get attention now and traction. So I went on to tick tock in the end of bite the bullet, and I'll do it. And one thing I've realized since joining tick tock is what an amazing community. The T 1d community is the such, you know, and I'm

Scott Benner 46:22
proud to advocate for them, yeah, you know. And they're so supportive.

John Story 46:28
They're keeping me going, too. When I went to Parliament in August, I remember putting a tick tock up, and I was outside Big Ben, and all I remember seeing was people was asking me, Are you scared that you're going into parliament to talk to government officials? And I just said, No, I'm not at all. At the end of the day, I'm stood here standing on the shoulders of 400,000 C 1d giants, with Lila holding my hand, watching over us.

Scott Benner 46:58
And I will continue.

John Story 47:00
Sorry, I will continue to fight for the T 1d community in the United Kingdom and worldwide, if need be, because we also believe that there needs to be early detection programs going in place. There's a clinical study going on at the moment called the Elsa study. And I will mention this man's name, he's a wonderful man. His name's path Narendra. He's a researcher. Is a professor in diabetes, and he runs something called the Elsa study, which is basically, it's early detection surveillance for autoimmune conditions. And he I've met with path a couple of times. He's a lovely, lovely man, but unfortunately, this is the 20,000 children in the United Kingdom have signed up for it. But as path, quite rightly, points out, unfortunately, it's just a clinical study that's a voluntary program, and it's generally aimed at those that are, let's say, more susceptible or at risk to type one, and that program is for three to 13 year olds.

Scott Benner 48:06
Lila was two. Yeah, she

John Story 48:08
wouldn't have been eligible for that Elsa study program. Obviously, after Lila's passing, we signed jack up for the program,

Scott Benner 48:16
and Jack doesn't have any antibodies.

John Story 48:21
But what's also important to know is we think that it's a great, great initiative. We think that the program should go national, because if we're finding antibodies in the system, but they're not yet living with type one, it can be put onto data systems with doctors, and when they go and when they go in to see their doctor, they know that they're at risk. Yeah, and it also, it also gives families the opportunity the preparation and planning for when the event will happen, that that child will develop type one, they're in a better place to deal with it.

Scott Benner 48:57
Yeah, John, this morning, I actually interviewed a doctor about early detection and screening and trying to draw more attention to it. It's a difficult path to get people to be aware of and even to get doctors to agree to, if you were to come to them and say, Hey, I need to be screened for something, for them to say, Yeah, that makes sense. Let's do that. You know, there's a lot of education that needs to happen. Exactly You said you've met a lot of people who've kids got in your daughter's situation, but were maybe saved at the last second by something. But have you heard from other people who've lost their children? And is there a way to, I don't know, gang up, you know, get together? Like, is there, you know what I mean? Like, I mean, instead of everybody off in a certain direction, trying to do a thing. What if you guys united? Would it make it more powerful? Do you think it would help bring more attention?

John Story 49:48
Indeed, I've been speaking to a lady from Wales. She lost her son a few weeks after his 13th birthday. I won't mention her name because I don't think, but what I will say is she is an absolutely. Wonderful, wonderful woman. She's a fantastic advocate. She's the work she's done in Wales has been magnificent. She's actually won a proud of Britain award as well. She knows who she is, and if we've got any Brits listening, everyone will know I'm talking about now, but, but, yeah, I've spoke to her. She said that apparently, med schools in the UK, now I don't know how true this is, they get around 15 minutes on the subject to type one. Yeah, that's about right. So when I spoke recently to one of my local MPs, she's going to get me in touch with our local holy York med school, she's going to try and get me to stand in lectures and talk about Lila. And if we can put without your respect, if we can put the fear of God in people whilst they're still in med school, maybe that will make them understand the importance of testing for diabetes. Very, very critical.

Scott Benner 51:01
You know, that moment comes up, it occurs to them that this is one of the things they should be wondering about.

John Story 51:07
And I mean, at the moment, I'm doing trying to raise as many funds as possible for break through, T, 1d I've raised 11,000 pounds. That's about $15,000 in just over two months since line is passing. We did a Family Fun Day, and it was, it was, it was absolutely packed, incredibly proud. I've been sending emails out to all the GP surgeries in the United Kingdom. That's going to be a long and arduous process, but I'm currently at just over 4000 emails sent, but that's across GP, surgeries, primary care networks, integrated care boards, diabetes specialist, nurse, nurses, and of them, 4000 emails. I've received 42 responses so far, okay, but I've done 42 responses. They have all been positive. You know that because I've been saying in this email, do you have blood glucose monitoring kits? Do you have dip test for urine, for ketones, and are you displaying for teas posters within your surgery? And when those that have been emailing me back said we didn't have them posters, but now we're putting them up in the reception area, or we're putting them in our digital boards and all sorts. So if Lila's legacy can save just one life.

Scott Benner 52:21
I'm sure it will. John. She's doing all right.

John Story 52:25
I mean, to be honest with you, I was very I was running on fumes for quite a while, but Lila is giving me the strength to keep going every time I feel like I'm going to lose it. You know, when I'm speaking to somebody of importance, I can feel her touching my hand and saying, Come on, daddy, you can get through this. So I know she's with us, even though she's even though she's not here in body. I know she's with us in spirit. And I mean, and you can still fight for

Scott Benner 52:55
Indeed, indeed, you know. And she's,

John Story 53:00
yeah, let's leave a lasting legacy for Ray. You know, it's and I'm doing some doing something stupid in the next couple of weeks as well. I'm going to be basically, I've been a keyboard warrior for the last three or four months, emailing every man and the dog. But Consequently, I put about a few stone on in weight, or kilo, kilos or pounds, whatever you want

Scott Benner 53:22
to call it. Need to get out and get moving a little bit.

John Story 53:25
Yeah, yeah. So I'm going to do a 10 mile walk in Hull. We're we're mad about our rugby league. So I'm going to walk from the stadium of the club that I support, of sea to the arch rivals whole Kingston rover. So I'm walking from the west of the city to the east of the city and back again, and that's about 10 miles. So I need to get because Walking is one of my passions, but I haven't been doing much of it lately, but I need to, I need to shift some timber.

Scott Benner 53:53
Well, I just looked while you were talking, and today, the This podcast is ranked number 48 in the UK for meta in the medicine category. So hopefully people will hear it and share it with maybe their physicians offices you know people they know anyway at all, to help get your message around and and make sure that people you know remember the 4t and and remember that you know this could just because it doesn't happen to everybody doesn't mean it can't happen to somebody, and it's worth knowing about and fighting, fighting for and making sure that people are aware. I'm so sorry. I have to admit that it took me a while to pull myself back together when you told me about how you opened her bedroom door in the morning and say good morning. And I wasn't okay after that. I don't know how you were still talking, because I was trying to compose myself quietly off the microphone. Yeah, and I found a post online from July about your petition. I guess you had a petition going around. Maybe you still do, I'm not sure.

John Story 54:54
Yeah, it runs till December. It's currently at 21,250 we need to get to 100 Right?

Scott Benner 55:00
And those people need to be imagining like citizens of the UK can't be just from anywhere, right?

John Story 55:05
Yeah, as long as long as you're a UK citizen, you've got a UK passport, you can sign the petition. The trouble is, with petitions is generally at 10,000 signatures, the UK government responds online, and it's usually, don't matter what the position is to generally fob it off. They currently believe that there's insufficient evidence supporting routine testing for pediatric T 1d and it has no plans to introduce it. Well, let me tell you this UK Government, and I hope you're listening. One in 250 children are diagnosed with it, right? One in 100 across all age groups in the UK. So nearly 40% 100,000 are diagnosed at the aka stage, and our daughter is buried in a cemetery among adults because she's two, she was too tall to be put in a baby part. So, you know, yeah, we need to get to 100,000 to get it debated properly in Parliament. Now, I know you can get things legislated without the need for a petition, but we've put to get 100,000 signatures across the line would really, really drive the issue further. There's been, I don't know if you know Scott, but there's been a bit of a scandal in the UK as well. Lately, 55,000 people recently have been misdiagnosed with type two diabetes. They've actually been misdiagnosed with the condition because the test because the testing systems were incorrect. Oh my gosh. I didn't know about that. That's just recently hit the national news.

Scott Benner 56:34
I was going to tell you that I think it's very impressive. There's 21,000 people signed this petition. Is no small feat to get that many people to look at something and take a moment to complete it like this.

John Story 56:45
It is, it is. But then you get somebody like coming online every now and again, saying, call an immediate general election. And next thing you know, you got 3 million signatures within five minutes. And you're like, come on, they're not going to call it, are they? You know, at least if you're going to put a petition on make it meaningful, we are on page one of the petitions, which is which is a feat in itself. It's like going back to when I was been speaking with the T 1d community. I just don't think their voices are heard. I don't think they understand what living with the condition means that that misconception of, should you be eating that cream cake? All that kind of thing, you know, you can't eat sugar, you know. Well, what am I supposed to eat?

Scott Benner 57:27
Tires? Tires? Yeah, hard to make it for people to really understand something like this that they don't live with already, and it's so much time and effort to get somebody to be educated. That's why I said, I think it's fascinating and marvelous that you got 21,000 I can't believe somebody won't look at it for 21,000 signatures, 100 1000s, an insane number for something like this. You know, for, I mean, type one diabetes. This obviously impacts a lot of people, but it's still a very small fraction of the number of people walking the planet. Yeah, yeah. 21,000 is pretty like, in this case, said you're on a pretty small island, you know, I mean, how many people in the UK even have type one

John Story 58:07
the last estimated 400,000 we've got the fourth highest rate of type one diabetes in Europe. And the UK government think that we haven't got a problem

Scott Benner 58:16
here. Yeah, but 400 My point is, is that, like 21,000 is what percent 400,000 it's it's a big number, yeah, yeah. I mean, you're representing 400,000 people. If that's the number, 21,000 is a big chunk of them. It's over 5% of the people have type one. That's to say that you need 100,000 signatures. One in every four people with type one would need to sign your petition. How the hell you suppose even meet those people, let alone

John Story 58:48
Exactly? But what you need to remember, Scott as well, is it's kind of like it's not about just people with type one sign. And everybody in the UK should be signing this. Yeah, they don't know. In my opinion, you

Scott Benner 58:59
have a you have a level of perspective that most people don't have?

John Story 59:03
Yeah? Well, I say that. I say that from a bias perspective and an emotional perspective. But the reason I say that, like, even if you haven't got type one sign it, because people regard it as a rare condition, yeah, but it's only rare until it happens to you. You know, that's for certain type one diabetes does not discriminate. It doesn't care if you're black, white, pink, yellow or brown. It doesn't matter if you're one years old. It doesn't matter if you're 100 years old. If it wants you, it'll get you. And going back to the antibody testing thing as well, you can go through life without any antibodies whatsoever, but you'll just get one virus that attacks your pancreas and all of a sudden you've got it. There's various ways in which you can get type one. And I think it's critical for people to realize that it's not an I'm all right, Jack thing, yeah, at the end of the day, this, this, this petition. It's not just for me personally and our family personally. It's very much centered around the loss of our. Beautiful two year old little girl. But it's also to advocate for change and make sure that no child ever goes through what lion has been through again. And the sooner people realize that, sooner they'll start signing this petition.

Scott Benner 1:00:14
I hope so, John, let me ask you a couple of other questions. I imagine looking down you have a good feeling for your lineage and your wife. So are there other autoimmune issues in the family? Are we talking about celiac or hypothyroidism? Do people have you know, any other autoimmune issues that you know of in the family? Ra, for example,

John Story 1:00:35
right within our family, Emma's got lupus, okay, but lupus doesn't guarantee so basically, when, when Lila was born, she was tested for lupus, came back negative. I was born with cerebral palsy, okay, or cerebral palsy, but again, you can't get cerebral palsy. About proxy that's caused by a lack of oxygen to the brain, right? I was born with placenta previa. People used to think I used to say, when you score on dates with women, I said, Look, I've got something to reveal to you. I've got cerebral palsy, which affects my right arm and my right leg. But don't worry, if I kiss you, you won't catch it.

Scott Benner 1:01:16
No, please. I mean, but what about like Crohn's Colitis, nope, anemia. What I'm trying to think Addison's graves, like, anything like that, like aunts, uncles farther apart, like down the line, nope, no. So Lila was brought in you, you'll never know because she wasn't screened, right? But if maybe she had antibodies, and then, like you said, the virus came and listen, my daughter had a virus right before her diagnosis as well. Yeah. And, I mean, it's fairly, I think, commonly understood that this can be the pathway you have some sort of a virus. Your immune system, you know, gets a little half cocked and ends up, you know, attacking beta cells instead of the virus, vice versa, yeah, like, that kind of problem. You know, it's not uncommon. Obviously, it's also not a thing you would have known. We would we didn't know to think that people are going to be screened at birth for that stuff is, you know, if they, if anybody gets that accomplished, we're not. We're nowhere near that yet that's, you're a decade away of people maybe even making inroads and getting somebody to consider type one, something that we'd screen for, those auto antibodies.

John Story 1:02:23
Well, you're right. You're right. Scott, you're right. What doctors need to be thinking as well is, regardless of whether somebody's got antibodies or not, if your child at such a tender age goes in with any sort of virus, like your tonsillitis, the doctor needs to be thinking, what's the root cause,

Scott Benner 1:02:41
and maybe that should escalate their thinking, right? Like, hey, you've experienced the virus. Maybe that makes you more susceptible now to a diagnosis of something else. What are those things we could be looking for? Type one being one of them, exactly, exactly. Boy John, I want to wish you a ton of success at getting that into people's consciousness. And I hope this is helping you do that. You know, if you'd like to send me over any kind of post that would point to literature you have online, to the petition, to all those things, you know, I'd be happy to put it up for you online as well. Do you have a website that we could direct people to?

John Story 1:03:19
No, I don't have a website, but what I will do Facebook page? Yeah, I've got a Facebook page. What I'll do is I'll send you an email. Scott, within my signature, it says follow me on my socials, and it has some Facebook, my Tick, tock, and my Twitter, tweet, X, X, whatever you want to call it now, so you'll be able to find me through there. Yeah, I'll send you an email immediately after the podcast, yeah, and

Scott Benner 1:03:42
I'll put it all out there for you, and hopefully it'll, it'll reach people that can be helpful. I mean, I want to say again, I know we don't know each other, but I certainly hope that you and your family can find a way to, I mean, find some sort of peaceful moments here and again and to build forward for the three of you. I can't imagine, honestly, what you're going through. I don't know how to I don't even know how to be comforting. Honestly, I don't, I don't even know if I could be but I hope you guys find a way to find some peace and some quiet. And I don't know what that is. I'd love to be able to give you advice, but I don't know what it is, but I hope you keep looking for it and and that you and your wife can find it for you know, for you guys and for Jack,

John Story 1:04:29
thank you, Scott, that we really appreciate that. And you know, love to you and your family, love to America, love to the UK, and thanks for having me.

Scott Benner 1:04:40
No, it's my pleasure if you, if you have any updates ever, please, please don't hesitate to reach out.

John Story 1:04:45
Yeah, brilliant. Remember the hashtag Lila's law?

Scott Benner 1:04:49
Okay? Yeah, thank you everybody. Um, John, hold on one second from we're gonna stop, but I'm gonna keep talking to you for a second. Okay, okay, all right. Thank you. You.

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Tammy and her son are interviewing together. Devin (13) has T1D.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

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

Tammy 0:14
I'm Tammy. I have a 13 year old son who's here, Devin, who was diagnosed with type one a little over a year and a half ago.

Scott Benner 0:23
If you're looking to meet other people living with type one diabetes, head over to Juicebox podcast.com/juice, cruise, because next June, that's right, 2026, June, 21 the second juice Cruise is happening on the celebrity beyond cruise ship. It's a seven night trip, going to the Caribbean. We're going to be visiting Miami, Coco K, st, Thomas and St Kitts, the Virgin Islands. You're gonna love the Virgin Islands. Sail with Scott the Juicebox community on a week long voyage built for people and families living with type one diabetes. Enjoy tropical luxury, practical education and judgment, free atmosphere, perfect day at Coco Bay St, Kitts st, Thomas five interactive workshops with me and surprise guests on type one, hacks and tech, mental health, mindfulness, nutrition exercise, personal growth and professional development, support groups and wellness discussions tailored for life with type one and celebrities, world class amenities, dining and entertainment This is open from every age you know, newborn to 99 I don't care how old you are. Come out. Check us out. You can view state rooms and prices at Juicebox podcast.com/juice cruise. The last juice cruise just happened a couple weeks ago. 100 of you came. It was awesome. We're looking to make it even bigger this year. Hope you can check it out. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year where CGM that's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox the episode you're about to listen to is sponsored by tandem Moby, the impressively small insulin pump tandem Moby features tandems, newest algorithm control, iq plus technology. It's designed for greater discretion, more freedom and improved time and range. Learn more and get started today at tandem diabetes.com/juicebox this episode of The Juicebox podcast is sponsored by us. Med, us. Med.com/juicebox, or call, 888-721-1514, get your supplies the same way we do from us.

Tammy 2:51
Med, I'm Tammy. I have a 13 year old son who's here, Devin, who was diagnosed with type one a little over a year and a half ago. Devin, how old are you? I'm 1313,

Scott Benner 3:04
she wasn't lying. No, she's not good with phones, so I wasn't sure if she was bad with numbers too. I thought I would check. Here we go. Tammy, have you you've been on the show before, right? Yes. Do you know what your episode was called? Remember?

Devon 3:19
No. Devon, do you remember I can check No,

Scott Benner 3:22
don't check them. What you're not the producer on, like, a comedy podcast. I don't need you pulling stuff up while we're chatting.

Tammy 3:29
It just came out in June, I think. So it's been out two, three months, September, yeah, yeah,

Scott Benner 3:35
that's like 50 episodes ago. I don't remember either. Yeah, it's funny, though. The first thing I remembered when you jumped on was your voice because, like, I was immediately drawn to go, are you in Wisconsin? Like that was,

Tammy 3:47
Well, do you remember that was part of what we talked about? I said you wanted to know where I was, because you wanted to keep everybody away from the area, because our doctor was terrible, yes. Also, I said, Oh, we're from Chicago. And you're like, Yeah, I already know that. And I'm like, Wait, how do you know that?

Scott Benner 4:04
You sound so similar to my sister in law, who's like, from Wisconsin, right near Chicago.

Tammy 4:09
Okay, I was gonna say because typical Wisconsin is not Chicago. There's a little bit of a difference. Guess what? Starts getting like Minnesota, Canada.

Scott Benner 4:19
No, not that far. She's more, yeah, she's more. Like that, the other way, nevertheless, like, it occurred to me when we were like, trying to get you set up, which people will never know the horror of it, but it's, it's been, it's been 22 minutes, and I still don't love how everything is set up, but we've given up, just so you all know, the audio quality is where we could get it. I was having an internal monolog with myself, not about you guys and your inability to use technology, but but about your voice and how it made me want to say something. And I thought, Oh, wow, to think like you really when you're making a podcast, you have to be careful about that your natural inclinations towards things. You can't just do them over and over again forever and ever. You know what I mean, like, like, or you'd be like, Oh no, I heard this one before, and you didn't. It's just my dumb first reaction to things. So it reminded me to, like, pause for a minute before I say something. So I appreciate this. Devin, you're how old 13? Did we say 13? What happened you were? I mean, obviously you got the diabetes and all. But do you remember? How do you remember how it came on and what all occurred?

Devon 5:26
Yeah, like, a little bit before I was diagnosed, I got covid 19, and I went to spend the night at my grandparents house, like, maybe a few months after, yeah, I don't remember. It's after. What happened?

Scott Benner 5:42
But you were trying to give old people covid. Is that what was going on?

Devon 5:46
No, no, it was after. It was after. Oh, okay, it was closer to a

Tammy 5:48
year after. It had been it had been quite a while. Kevin, I'm gonna stop

Scott Benner 5:51
you for a second, because I have a thought in my head and I have to get it out. Tammy, why did I agree to have you back on what happened? Do you remember? Did you email me?

Tammy 6:00
Yeah, I did, because when we talked before, I was at the very beginning of some thyroid stuff, and we briefly talked about that, because that became a thing within the past couple of months before we talked and you had asked about other autoimmune in the family and stuff, and I mentioned that my older son has hypothyroidism, and I was starting to look into that for myself, because I was dealing with a lot of symptoms and stuff. So at that point, nothing really had come of it. Yet, I had seen a bunch of, you know, I'd asked to see an endo, even though my primary only referred me to ENT and, you know, it was a whole thing. But at that point, I was waiting to do more blood work to see if it was if my numbers were still trending in the same direction that they had been. But since then, turned out it was cancer. I had half my thyroid removed, and I'm, I'm all good now. So I was, I felt like I wanted to tell you the second half of that story, since you only got the first half, because it's 100% because of the podcast that I was able to oh, this

Scott Benner 7:01
is the thing where I'm the good guy. Okay, yes, it is. So if you were always good with those, but you just said cancer. So I feel so bad following up like this. But then why the hell are we talking to Devon?

Tammy 7:14
He was really mad at me that I didn't let him come on the first time.

Scott Benner 7:19
Problem not mine.

Tammy 7:22
No, he wanted to talk to you before. So I thought, why not? You know, she said some cash over if you want to be on a little short story, and then he can talk. But I think it's cool when kids come on the podcast and they talk about their experience, and

Scott Benner 7:35
so you're, you're producing that, is that what you're saying? You're making some production decisions. Yes, yes. Okay, so, so here's

Tammy 7:43
what I know. What I want to do is thank Devin for being diagnosed, which sounds ridiculous.

Scott Benner 7:48
Oh, no. Way to make me sound like an toll. Tommy, great, good job.

Tammy 7:53
No, not at all, not at all. If he wasn't diagnosed, I I'd be, I'd still be full of cancer right now. I mean, it sounds absolutely ridiculous, but I honestly, honestly believe that's the truth.

Scott Benner 8:05
Okay, so we'll find out a little bit. See. Now you made me I'm like, why is this kid on my podcast? And no offense, Devin. If you hear the noisy with the microphone, that's Devin. I know it is. He's making me insane. Stop touching that microphone, Devin. I will come to Chicago and smack you in the head. Whatever that noise is, it has to stop. Okay, the last time I was in Chicago, Devin it was to bring my mom, who just beat cancer, to live with my brother. Yeah. So stop touching that microphone, please.

Tammy 8:32
If that's what you're doing, he's basically saying he'll come find you.

Scott Benner 8:35
There's that noise. What is that? If I don't know what that noise is, this I have to, I'm gonna, I can't,

Devon 8:41
I don't I don't know what. I'm not touching the

Scott Benner 8:44
microphone. All right, put your hands up in there. Don't move. I'm just kidding. You don't have to do that. I just wanted

Tammy 8:51
to see. Are you sure it's coming from him? Do I need to lock myself in a tiny closet or something?

Scott Benner 8:55
I don't know you. You were a problem earlier, but it feels like it's Devin. But now maybe step up. My hands down. Oh yeah, yeah, I'm sorry, Simon. Simon says, Put your hands down.

Tammy 9:05
Maybe he's been the problem this whole time and you were just blaming me.

Scott Benner 9:09
I wonder if I could play Simon Says, on a podcast wouldn't work. Okay, so Devin, I want to finish hearing about you getting diabetes. Then we're gonna jump over to your mom, and then we will come back and chat with you. So tell me what you remember the lead up being like, and you know, How'd you figure out? Like, I'm sorry, when we last left you, you were trying to kill old people with covid. Then what happened?

Devon 9:28
Yeah, so I didn't have covid at the time, but later, I went over to my grandparents house, and they had brought something up to my mom. I don't remember exactly what it was, so then she brought me to the doctor's office. They just did a bunch of tests, and then had to go to the hospital.

Scott Benner 9:47
Obviously, Kevin, are you telling me the story here is that your grandparents said a thing that you don't recall, and then you went to a hospital to take a test you don't recall, and then you had

Speaker 1 9:56
diabetes. Yep.

Devon 9:58
Awesome. That's exactly what I. Saying,

Scott Benner 10:00
Devin, do you listen to good storytelling? Do you listen to any podcast, Devin, besides yours? No, you do listen to mine? Yeah. Oh, well, then never mind. You're awesome. Okay, so are you? Do you spend days in the hospital? Or how does it work out?

Devon 10:15
I ended up spending like three days in the hospital. Okay, before they released me.

Scott Benner 10:21
Do you recall how the entire process made you feel like internally? I know it's weird to ask a 13 year old maybe to talk about their feelings. I don't know if you think about your feelings a

Devon 10:31
lot, but I was just

Scott Benner 10:33
scared, I guess, yeah, because can you put more words to it? Scared? Because I

Devon 10:39
was scared, because it was something like, I knew diabetes had assisted. I just didn't know what it was. And like, as they started teaching me, I was like, I could die from this.

Scott Benner 10:51
That's one of the things that occurred to you. Yeah, yeah. How did they tell you that

Devon 10:56
they said something about, they're constantly talking about me having a high blood sugar, because there I was, like, in the 350s I believe. And they said that, like, a bunch of bad, like bad stuff, like organ failure could happen if I was constantly higher.

Scott Benner 11:14
I'm sorry, Tammy, they led with, you're gonna have organ failure if you have high blood sugars with your 12 year old.

Tammy 11:19
No, no. I feel like that was in there somewhere. The way they came to us telling us what was going on was, like, the pediatrician was great in the office. We obviously, we've been seeing her his entire life. And she said, you know, he's, he's got diabetes, you're gonna have to go to the hospital. And we're like, what? Why do you have to go the hospital? And she's like, oh, yeah, you'll be there a couple days. And I said, What? Like, you know, we have no knowledge at this point of how these things happen and how it gets diagnosed and what the process is, but it was very vague, though. After we got to the hospital, everybody kept saying diabetes, but they kept saying we're running more tests. We're running more tests because we don't know if it's type one or type two. And I'm like, how do you not know that? And they're like, Oh, we're waiting for more test results to determine that. Of course, at the time, it didn't make any sense to me, and it really doesn't make any sense to me now. But, yeah, there was, you know, some talk about long term effects, and I feel like that was completely unnecessary, knowing what I know

Scott Benner 12:10
now, in the pediatrician's office. No, that was at the hospital. Pediatrician was great. What a bummer the hospital is. Yeah, Devin, what's a brat? A What a brat? It's food, right? Do you know what it is? A brat works? Yeah. What is it?

Devon 12:27
Describe it? To me, it's a guy like a sausage and like a hot dog combined,

Scott Benner 12:32
a sausage and a hot dog combined. Is there a need for that? Do you think? Like, have you ever had a sausage? It's good, yeah. Have you had a hot dog? Yeah? And you've had a sausage, yeah? And I put them together and I get a bra, totally, all right, do you put something on it? I got an onion or something, or

Devon 12:54
no, most of the time I just maybe put a little bit of mustard on

Scott Benner 12:57
it. Okay? And you get and when you say, do you say brought like that, or do you how do you say it? Oh, it's a bra. Brought, yeah, like, rot, like that, like that, like, all stretched out and weird. I can hear my brother, my brother, who grew up in Philly and now lives in that wasteland where you guys are. I said, What are you doing today? Is how we're gonna put some brats on the grill. I'm like, are you doing like, somehow, we speak. Brought my God, just eat a hot dog. You know what I mean?

Tammy 13:25
I love I love that you're so focused on our voices and ours.

Devon 13:31
My voice is ridiculous. There's only one way to eat a hot dog, and that's Chicago style. What does that mean? My mom can explain it to you. She worked at something

Scott Benner 13:40
your mom worked at Dave and Busters.

Tammy 13:42
No, I worked. I worked at an a and w restaurant. We had Chicago style hot dogs, and I've never forgotten, it's mustard, onion, relish, pickles, peppers, tomatoes and celery salt.

Scott Benner 13:52
Oh, my God, that sounds like horrible. It does. Mustard goes on a hot dog. Yellow, you're done. That's it. It's a hot dog. No, no, no. Must be Chicago style. That's ridiculous. Also, your pizza is garbage, but that's neither here nor there. No pizza is amazing. Devin Listen, have you been able to Bolus for one of those 19 inch deep dough bowls with the cheese on top yet? Or have you worked that

Devon 14:17
out? I have. It didn't work out well, didn't work out.

Tammy 14:23
Well, there's a walk afterwards.

Devon 14:25
I was up at 300 for the next two days.

Scott Benner 14:29
Get your mom's like, don't let people think that. Stop being Don't be sarcastic with the man

Devon 14:35
exaggerating. I found the, uh, which episode it was for the last time,

Scott Benner 14:41
Devin, I asked you not to do that,

Tammy 14:45
he doesn't listen very well.

Scott Benner 14:47
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Devon 17:24
It's just lots of medical choice, choices over and over again, like maybe 100 times a day. There's just so much to it, so much could go wrong if you do a little bit, like, just a little bit off of what you're supposed to be doing,

Scott Benner 17:43
feel like you're under a lot of pressure. Or, No, yeah, it is. Has that changed how you're existing? Like, did you used to be more I was gonna say laissez faire, but I don't believe that that's a term that I should be using, or that you would know, did you used to be more casual or, and you're not now, or, or vice versa. Has it changed anything about your personality?

Devon 18:02
Yeah, kind of because before I was diagnosed, this is gonna sound weird, because I'm still immature, but I was insanely immature. But obviously, in the one year, one and a half years it's been I've changed a lot, really, how, because I have to deal with diabetes, that there's a lot of things that I need to know that the average person would not know, and there's just a lot to remember.

Scott Benner 18:29
And don't let me put words in your mouth, but let me ask you a question. Okay, do you feel like you see the world differently than you used to? Yes, 100% how so? Devin, let me tell you a secret about you. I think you know what you mean. I don't think you're finding the words to say it. So I'm going to lead you around a little bit in our conversation. I hope you don't mind, yeah, how has your interaction with the world changed?

Devon 18:51
It's not like, really like, completely different trying to think of the words. I just can't.

Scott Benner 18:57
I know the words are hard. I don't want to lead you too much, but I think it's in there, and I want to find it okay. All right. Do unimportant things seem unimportant now that seemed important before. Do people get upset about stuff and you think, like, why is this a problem? Do you now have, like, a different perspective about life? Is what I'm asking. Yeah, a little bit how, like, just give me one situation where one of your dumb friends did something and you realized I don't feel the same way about this that I used to.

Devon 19:31
I think they got like, some random like, sickness or something or cold, and they're, like, constantly complaining about it. I'm like, That's really just nothing, that's it. And I used to think, like having a cold or something gave us a lot,

Scott Benner 19:49
yeah, if somebody granted you a wish, by the way, I bought lottery tickets last night, I could be a billionaire right now, Devin and if I am, this is for sure, the last buy. Podcast episode I've ever made my entire Well, actually, that's not true. I'd keep making the podcast. Would I a billion dollars, I don't know, a billion dollars like I would make you, Devin, how would you make me? I could. I could send, like a hit squad to your house and pay them in, like out of petty cash. You know what I mean.

Tammy 20:18
So I'm sorry when you make him blow his nose first. Oh, my dev, blow

Scott Benner 20:22
nose for your mother, for God's sakes, do you have a tissue in the room? You call them Kleenex.

Devon 20:30
That wasn't stifling or anything.

Scott Benner 20:32
Did you say stifling? Yes. Oh, that's amazing. I wish you wouldn't have said uh immature so early in the episode, because I think I would have called the podcast episode something about that. But okay, so you so things are shifting a little bit. Some of the less important things in life, you can see them a little more clearly. Now you know what it's like to have more responsibility. That responsibility carries real like consequence in your life. But are you nervous about it? You worry about it, or is it just a thing you understand, this episode of The Juicebox podcast is sponsored by ever since 365 and just as the name says, it lasts for a full year, imagine for a second a CGM with just one sensor placement and one warm up period every year. Imagine a sensor that has exceptional accuracy over that year and is actually the most accurate CGM in the low range that you can get. What if I told you that this sensor had no risk of falling off or being knocked off? That may seem too good to be true, but I'm not even done telling you about it yet. The Eversense 365 has essentially no compression lows. It features incredibly gentle adhesive for its transmitter. You can take the transmitter off when you don't want to wear your CGM and put it right back on without having to waste the sensor or go through another warm up period. The app works with iOS and Android, even Apple Watch. You can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at ever since cgm.com/juicebox, one year, one CGM.

Devon 22:11
I don't like really worry about it. It's just I understand a lot more now.

Scott Benner 22:16
Okay, do you wish you didn't understand or do you like that? You know, it's

Devon 22:20
kind of both because, like, it's hard to know it and it's hard to remember, but also it's just a good thing to just know

Scott Benner 22:32
what's the thing that around your diabetes that you never remember, that your mom's constantly bugging you about, let's see pre bull sink, pre ball sink. Yeah, that's the one. That's the tough one. No, I don't, I

Tammy 22:45
don't know about that. He knows to do it. He understands how to figure out what kind of time frame like. He knows all of these things.

Scott Benner 22:52
He just doesn't do it. Yeah? No, he does at my dad's house. I don't, yeah. Tell me that, yeah. Makes me feel like, makes me feel like, I know why there's a dad's house at a mom's house, but

Tammy 23:07
because he ate his Sour Patch Kids after he was diagnosed. Remember, that's what, that's one thing we talked about

Scott Benner 23:12
that was your dad. That's awesome. Yeah, I remember that. Wow. I remembered something game

Devon 23:20
me and like. It's also because the only time I Pre-Bolus, yeah, at my dad's house is if I'm at 271, like I am right now,

Scott Benner 23:28
why do you not Pre-Bolus at your dad's house? Well,

Devon 23:32
most of the time I just don't have enough time to do that, because in the morning I'm pretty pressed to just do as much things as I can is

Scott Benner 23:42
your dad not helping you as much with other stuff so you don't have as much time?

Devon 23:46
No, it's just because, with school and everything, I have, like, maybe half an hour to get things done.

Scott Benner 23:53
How was that different when you're with your mom? Well, when I'm with my

Devon 23:56
mom, that she helps out with, like, she like, makes my breakfast and stuff.

Scott Benner 24:02
Your dad's like, if you want to eat the foods in the kitchen,

Devon 24:04
yeah, he he comes down like, I ring the door while he comes downstairs, opens the door, then he goes back upstairs.

Scott Benner 24:11
Yeah, that's the attitude that got him out of your mom's house. I don't know if you noticed that or not, so sure. He's lovely, by the way. Okay, all right. When I said, what's different at your dad's house, Tommy was like, please don't say the strippers are hiding my phone. Please don't say something weird like that. Okay, so is it hard going back and forth between different parents house with the diabetes

Devon 24:32
sometimes? Yeah?

Scott Benner 24:36
Because, like, how? So

Devon 24:38
if I'm like, going somewhere where both my parents are gonna be there. Then, like, which, like, bag with all my stuff I have it? Which one should I take? Like, should I take one the one at my dad's house, because, like, I'm there and he's gonna be taking me there and stuff that can happen on the way. Or should I just leave that one there and have my mom bring. The other one, which has more stuff in it. Yeah, Hey,

Scott Benner 25:04
real quick. This is for the editor. About 40 seconds ago, I cracked my toe and it was really loud. If it if the microphone picked it up, can you please leave it in because I was so impressed with how loud it was. This is not for you, Devin. It's for the editor, Rob. You know, Rob,

Devon 25:17
I don't know Rob. Rob would

Tammy 25:19
do it's a little bit for me too, because everything on me cracks, and there's always somebody that says, what was that?

Scott Benner 25:24
I just I can't believe how audible that was. Rob went to a diabetes event recently. He was a local famous for being the editor of the Juicebox podcast. That crazy. Oh yeah, yeah, Devin, you will not be famous from this. I'm sorry. Is that a thing kids think about, like when you think about want to do when you grow up, is one of the things you're like, maybe I could be an influencer.

Devon 25:46
I never really wanted to be an influencer or anything. What would you like to do? Well, ideally, I'd like to play a professional sport, but I would also want to get get an engineering degree, just in case, an

Scott Benner 25:59
engineer who plays football and has a model wife. Is that what you're looking for?

Devon 26:03
Oh, yeah, yeah, that sounds perfect. Like a Bugatti. Oh, no, not. Not a Bugatti,

Scott Benner 26:07
no, what do you Oh, you're in Chicago. What do you want? You want a big pickup truck. What are you looking for? No, I want a Lamborghini. Where are you gonna drive that there? I don't know. Go very fast from one traffic light to the next one, and for

Tammy 26:20
only about three months out of the year, because they're because the rest of the year is cold and snowy.

Scott Benner 26:24
Yeah, terrible. Devin. What's it like to your entire life the football team that you cheer for sucks? What does that feel like

Devon 26:32
they're not gonna suck this season? Hold on, boy, did

Scott Benner 26:36
they keep that Caleb Williams, boy, or they ship him off? No, they kept he's he's just Devin. He's struggling because he's not good. Stop, stop. Listen, I'm gonna give you the best advice anyone's ever gonna give you, when they don't look good, they're not good. When they're winning, they're good winning. You know how you win in the NFL? You spend a lot of money to buy players. You don't see that happening. You're not winning. Okay? And there's two teams in the league that always spend a ton of money and always get the wrong

Devon 27:10
people. You're cheering for your tush. Push.

Scott Benner 27:14
Easy. Easy, my friend, easy, won the Super Bowl, blew out the chiefs. Okay, listen, I'm happy. I'm happy they won over the chief. Of course, everyone's happy about that. There's three people that like the chiefs. They all live in Kansas City.

Devon 27:29
That's Taylor Swift, Travis Kelsey, and the owner of the chiefs.

Scott Benner 27:33
This, Taylor Swift is going to make me like her if she keeps being human on these podcasts. I don't want to talk about football, Devin, because it sounds like you're going to be pejorative about my beloved Philadelphia Eagles. This is the chance I get to tell you that in seven days, I'm going to meet I'm going to the eagle stadium, and I'm going to get to meet Brandon Graham. He's the reason, I believe, why we won the first Super Bowl that we won. Wait, who? It's not important. He's a linebacker. I don't know you were probably eight when this happened, but the first time the Eagles won the Super Bowl, I 100% sure Tom Brady was about to drive down the field and just beat us, and Brandon Graham, like came in and just hit him and knocked the ball out. And that was it. My life had meaning. Again. My brother has an event he's going to. He had a plus one. He invited me to it. I'm going to get to see the trophy, the Super Bowl trophy, and meet Brandon Graham. And even though I'm 54 years old, I'm going to get him to sign his rookie card for me. That's amazing, yeah, because I feel like he is the reason why we won the Super Bowl. There's a statue outside of Nick Foles and the coach, the coach, by the way, what a Lud this guy wins the Super Bowl after being a coach for a few years, Devin, right? And you know what he does in the off season? He writes a book about how to be a winner. And I was like, I could have coached that team then. He's never been a winner since then. And now I got to look at it, yeah. Now there's a statue of him outside of the stadium, but it should have been Brandon Graham, is all I'm saying. This is not the point Devin The point is that the bears are terrible.

Devon 29:05
They're not they're gonna be good. This season. They went undefeated. They beat the chief.

Scott Benner 29:09
You'd be better off if you got the Black Hawks spikes and tried to teach them to play football. Do you understand what

Tammy 29:16
I'm saying? He's a true Bears fan, let's be honest. Yeah. He's endlessly optimistic for no reason. The bears

Scott Benner 29:23
were listened to bears the last time the bears were awesome. We took your defensive coordinator in the 80s, and you haven't been good since then. I'm sorry about that. You know about Jim McMahon and the refrigerator, Perry and all these

Devon 29:34
people? No, because I'm not 5000 years old. Devin.

Scott Benner 29:38
That's harsh man. They used to put a giant defensive tackle in at running back, and he would just wander forward and fall into the end zone, and then you made fun of me when my quarterback takes the ball into the end zone, you used to have to bring in a defensive lineman to go that one last yard. Why don't you look it up Devin before you cast aspersions? Okay, I'm gonna put the Super Bowl. Shuffle and repeat. Oh, my God, that was horrible. Oh, it was the best thing ever. The video was amazing. So Devin, it sounds like your mom thinks you saved your life. Are you the oldest son? No, no. Who you have a brother

Devon 30:14
that's older. Yeah, he's turning 16 this year. This thyroid

Scott Benner 30:18
thing really re balances the scales. Then what you don't realize is that women love their firstborn son more than their other children, and you just jumped ahead of him. So good for you. Congratulations, Tammy, yes. Tell him what happens. I don't know what happens to you girls. You make a baby. It comes out. The first one's a boy, and then that's it. Then that's Jesus, right?

Tammy 30:44
No, I'm not saying that's not a thing. I'm I'm saying that's not a thing here.

Devon 30:52
So who's your favorite

Tammy 30:53
thing? No,

Scott Benner 30:55
no, let's dig in for a second. Which one of your children is your favorite? We need

Devon 30:59
this on recording. How many kids

Scott Benner 31:00
do you have? I

Tammy 31:01
have two. The two boys, seven is almost 14, and the other

Scott Benner 31:05
ones, 16, one of them you like a little better than the other one.

Tammy 31:09
Which one is it? No, you know, and it's, it's, I'm really not gonna pick one, because it's not a thing. But this is something I thought about. It was relatively recent. Somebody said the same thing, and they asked me, like, there's got, you got to have one that you like better than the other. And I legitimately thought about that, and it became in my head, like apples and oranges, there's a lot of good things about this one, and then there's a lot of good things about this one, and they're very different things. And there's things that are not so good with this one and not so good with that one. And again, they're very different things, yeah, so it's, it's hard to compare Devin and I have a lot more in common as far as the things that we like. We're both sports people. So it's like, okay, well, you know, like he and I could do more things together. But then the other one, there's, you know, those other things that he and I, there's connections that he and I have that are different than what I have with Devon. Do you know what I mean? Like, that's not, not a in even comparison? And I don't think it ever can be. And I, when I was thinking about this, I started thinking about my dogs that I've had over the years. Because everybody says that when you lose a dog, you know, this one that doesn't compare to that one,

Scott Benner 32:13
Devin, get ready to find out that she likes the dogs better than you and your brother. Hold on.

Tammy 32:19
They already know. But that's, you know, I started to think about that, and I think that's easier for people to understand. If you don't have kids, but you've had dogs, I think it's easier to understand it that way, like you get a new dog, and, no, it's not replacing the dog. It's that you lost. It's and it's not that they're better or worse, it's they're different. That's really what it comes down to, is they're different. You're not going to love anything more or anything less. You're just going to love it differently.

Scott Benner 32:47
Are you saying to me that if you lost Devin, like he just disappeared at the mall, I'd go get a new one, go get another kid, and eventually you would love that one too. I would do another type one. Yeah, you're completely replaceable. Devin, is what I heard. No, Tammy, listen, be serious. I have two kids. I completely understand. I think every parent in the world would tell you the same thing, like, I really don't have a favorite child, and there are obviously things about one that are different than the other. But you know, my kids tease us all the time, like, which one of us you like better. There really is no answer, right? Like, there just really isn't that's all you got. Dev, and I was just saying that

Tammy 33:27
you asked me that, when somebody just asked me that, like last week, and I legitimately thought about it, like, how do people choose this? Do people actually have a favorite? Because I'm like, I don't know. It's like, I want to make a list and see which list is longer if I had to choose.

Scott Benner 33:41
Not that odd, though, because everybody who listens I have a listening device in your phone so I can hear everything that's happening in your house. That's right, Devin, I know everything now. One person who listens to schizophrenic is definitely going to think I'm listening to them, but I'm not listening to you. I promise.

Tammy 33:58
I've at a conference I was at for work with there was a workshop that was teaching you what it's like to be schizophrenic. And so you had to wear headphones that were constantly people talking like in in each ear, different people talking like over each other. And you were given this list of tasks to complete and trying to be able to focus on what you were supposed to be doing. It was simple. Things like find this object in this room. And so you would have to go into this room and look for this object all the while you've got these earphones. And then people are talking and screaming and yelling and making noises and stuff like that. And it

Scott Benner 34:34
was very interesting. Oh my gosh, that's horrifying, is that? And they they made you do that at the a and w restaurant.

Tammy 34:41
Don't currently work for a and w I was

Scott Benner 34:44
just kidding. I realized all that. All right, Devin, is it fun busting your mom's balls? It is, right? Yeah, you do it. Do you guys do it at home? Oh, yeah, Tommy, be serious, two boys and you it's hard, right? Yeah. Yeah, do you wish there was a girl there to like,

Tammy 35:02
No, I don't. Not even a little bit. I'm not gonna lie, I'm happy with what I have. But, you know, we give it to each other, though it's not, it's definitely not a one way street.

Scott Benner 35:12
Yeah, I hear you, Devin, what do you think is gonna be the most difficult part of the next couple of years of diabetes? What is it that you are worried that you're not going to be able to figure out? What is it that you feel like is going well,

Devon 35:27
honestly, I'm not sure what the most difficult part about well, there's

Scott Benner 35:31
your brother. I heard him bark. Oh, that's why you don't need another girl. She's already got the dog, so you're not there's nothing you're worried about. What is it that give me the rest of it, then, how do you think this is gonna she's like, they love me the most. I knew it. Dog is celebrating. It's so it's mocking, Devin, it's barking. She hates you, Devin, your mom loves you. You know that, right? No, she doesn't. Oh, Devin, why do you say that? Hold on, forget about your diabetes. Why did you say that?

Devon 36:08
Hold on, forget about that. Do you want to know what episode it was where my mom was in lab? Go ahead.

Scott Benner 36:13
Go ahead. Dev, what do you? Seems like you have something to say. Go ahead, buddy. Why? What did she do in that episode that makes you want to bring it up so people can go here. I just want to promote it, trying to get her Instagram up. What are you doing?

Devon 36:30
Yeah, it's number 1480 ergo, you probably have hypothyroidism.

Scott Benner 36:37
Yes. Did I say that during the

Tammy 36:42
episode? I say that too. Sometimes

Scott Benner 36:44
somebody called me pompous online recently, maybe they heard me say, ergo, that lady was so mad at me. Oh, my God. Where was I think it was in the Facebook group. And somebody was just being very unkind. And I, like, kind of stopped, and I was like, hey, like, you know, make your point. But like, try to be, like, nice about it. If you can, like, that'd be awesome. Like, I think you're making a good point here. You didn't have to really be so, you know. And then they kind of came, like,

Tammy 37:12
You've been saying that in the group quite a bit more lately than you were before,

Scott Benner 37:17
Tammy, that's your imagination. This the group runs exactly the way it always runs. She, she said something back and like, about it being my opinion. And I was like, No, hold on. I took it out to like, 17 different AIs. And I was like, read this and tell me how it reads to you. And every one of them was like, No, is she being so I just, I think, I said to it, I was like, both to keep me out of it. Like, can you give me an example of how this response could have gotten the point across, but been kinder? And then I, like, copied it, and I said, Hey, look, I asked AI, like, This isn't me. And here's what it said. She called me pompous. She yelled at me. Made, made a bunch of unpleasant words, you know the curses.

Tammy 37:58
He called you pompous because you used AI,

Scott Benner 38:01
no, I think she called me pompous for correcting her. How dare you? Yeah, it's okay. Then she was very mean to me. Devon, she used a lot of bad words. No human reaction. Unfortunately, Devin, what's the worst curse you can think of? It's okay if you say it in front of your mom right now, go ahead. I don't think I should say that. Oh, good boy. Good job, Devin. Which one do you think he was thinking of?

Tammy 38:20
Tommy? Like I like you don't think when I'm not around.

Scott Benner 38:24
Devon, do you curse a lot when your mom's not around?

Tammy 38:30
It's okay. You can say, you can say you do, because I get to when I was a kid.

Scott Benner 38:35
Oh my gosh. And your favorite curse, you know what it is? You don't. You have to tell me, but you have like, a go to No, no, no, no kidding, huh? I don't know what my favorite one is. As I get older, I curse less. It's disappointing, honestly,

Tammy 38:52
when you're doing it wrong,

Scott Benner 38:54
yeah, you think I'm breaking myself all right, Devin, let's find out what you did for your mom here. So because you have type one diabetes. Good finish. That thought Tommy, because Devin has type one. You Where does the journey start? How does it end? With you figuring out about your

Tammy 39:08
thyroid, because he is type one. I found the podcast, and the podcast helped me learn a little bit more about autoimmune and hypothyroidism and and those kinds of things. Again, my son, my older son, has hypothyroidism, but we found it so early, it's been perfectly controlled, so learning anything about it wasn't necessary. Honestly, it sounds ridiculous, but he I think it was four, and we're doing blood we were doing blood work for allergy reasons, and that came up and somewhere, you know. So, I mean, you've talked about, you know, hypothyroidism, and you know, if you have symptoms, and even if your numbers are normal, there's something else wrong, obviously, push, you know, advocate, you know, figure out what's going on if you're not feeling well. And that's common sense, obviously. But I remembered something when my son was diagnosed that they said, because he had so many hours. Issues. They said, Well, now that we found this thyroid situation, once we get that controlled, his allergy symptoms might get better. That's they're linked in some way. And it dawned on me that my allergy symptoms had gotten worse in the previous year, year and a half, maybe. And I thought, Oh, crap, maybe that's what's going on. Started looking up what, you know, the difficult symptoms are, and stuff like that. And I was like, Okay, this sounds like me. So I already had blood work in, like, ordered, and I thought, I'm gonna go get this done. I'm gonna see what it is. And I did that, and it was higher than it had ever been. I looked back at trends, because I'm like, I don't know what a 3.5 means overall. I can see that it's within normal range, but I look back at trends, and I was always around a two, and this was like, what just happened? Why is it going up? That started me thinking, Okay, well, that that matches up with what seems like, what's going on with me as far as symptoms, and there's, there's something not right here. And my doctor, of course, messaged me and said, everything's normal. And I said, Well, I'm not feeling I messaged back and I said, I'm not feeling well. I feel like there's something going on here. I'd like to explore what my options are. And so I got an appointment with him, went in, and he felt around on my neck and said it felt a little enlarged. So he sent me to ultrasound. Ultrasound came back showing some nodules and things like that, and but none of them were large enough to warrant a biopsy, and so they referred me to ENT, just to have them take a look and see what they think. And I said, Well, I why ENT and not Endo? At this point, I'm convinced that I have hypothyroidism, and that's who I want to go see, right? And so I said, I can you send a referral for that as well? I'm happy to see Ent. I already had one. You know, I've established with this doctor for many years, so I'm happy to go see him and get all of the information, see what everybody thinks at this point. I want as much information as possible, and I want as much help as possible, because I'm not feeling well. Did give me the referral to endo as well. I managed to squeeze in with her relatively quickly, within a couple of weeks. And she said, I don't like the way that one looks. I want you to get it biopsied. And she said, I realize it's not big enough, you know, because they have that threshold. And I said, Okay, saw ENT shortly thereafter, and he said, I wouldn't have sent you to biopsy. I would have just had you go back for another ultrasound in six months. In six months and see where you're at. But he's like, buddy, you know, it doesn't hurt to do it if you want peace of mind, 90% of the time, this stuff isn't cancer, but if you know, if you want to go and do it, go do it. Well, it took three months to even get in to get the biopsy done, and in the meantime, they were going to my endo said she wanted to do more blood work to see if the numbers were continuing the way that they were going. I never got a chance to do that, because I had had a ear infection and a sinus infection and all this other stuff. And she said, hold off until you're done with medication and you're done with the illness, because that can really throw off the numbers. It's not going to be accurate as far as what's really happening. So I never got to do that. But shortly after I was sick is when I went and got the biopsy done. That was a Tuesday. On Thursday, they called the doctor, called me, and I knew, knew immediately when it was her on the phone and not a nurse, and she said, yeah, it's cancer. We're going to go in, we're going to take the whole thing out. We're going to just go hard in the paint with this and and do all of this. And I was like, okay, that's terrifying, but all right. So I saw the surgeon the next day, actually, and she calmed me down quite a bit. She said this, if I had to pick a cancer to give myself, this is the one I'd want. So I was like, Okay, that makes me feel a little bit better. And three weeks later, I had surgery that she ended up only taking out half that everything looked good. Said the nodules that they removed, you know, the whatever part actually had cancer, she said it was a lot smaller than they actually thought it was in the first place. And it's great that we caught it this early. And you know all of those things that they tell you and and that's pretty much where we're at. I went for an ultrasound a couple months later, just for the other half. Other Half still looks good. Everything's all good at this point. Well, can I

Scott Benner 43:59
ask Devin, real quick, I'm going to stop you for a second. Devon, what's it like to hear your mom? To hear your mom talk about being sick? What do you mean? I mean, does it make you worried? Does it make you feel compassionate for her? Did you just worry that, oh, my god, I'd have to live with my dad if she died, and make my own breakfast every day? Or like, like, what? What comes into your head exactly that does sound like what a 13 year

Devon 44:19
old would say, yeah. I mean, that's

Scott Benner 44:20
what I would think of like, oh my god, that guy's not going to make gonna make me breakfast. This lady's gonna be gone. I'm gonna be eating cereal for the rest of my goddamn life. Good. What do you

Devon 44:27
got? So, like, in the moment when, uh, like, she like, I'm pretty sure, yeah, she texted me saying that she had, can't like me and my, no, I didn't or something. I don't know, I don't remember, that was like, five years ago.

Scott Benner 44:41
This is making me laugh. This is making me laugh because I have two brothers, and I just think back now and think my mom must have just been every day she must have been. I'm like, I can't believe I'm stuck in the house with these idiots.

Tammy 44:53
First of all, this was eight months ago, Devin.

Scott Benner 44:56
I'm gonna say, Devin, I'm gonna say a couple of things. If your mom. Texted you, hey, I have cancer, lol, or whatever. I gotta think the state would come and take you from her. So I don't think she did that. I think she's smarter than that. Um, so you don't really so what I'm learning is is you don't have a real recollection of this, like it didn't make you feel

Devon 45:15
a certain way. Oh, no, my memory is more trash than a dumpster.

Scott Benner 45:19
Okay, how about now, as she's talking about it, were you even listening to her, or were you like, looking at, like,

Devon 45:23
your phone? I mean, I was listening.

Scott Benner 45:27
When you listen to the pod, you listen to the podcast, Devin, yeah, I do. Do you feel more connected to the people who you're listening to than you do to your own mom when you're listening to her talk

Devon 45:37
honestly? Yeah. Sometimes. Why do you think that is? I know

Scott Benner 45:41
why it is. Devin, I'm wondering if you

Devon 45:43
know because they have diabetes, and she doesn't, and she's my mom. Yeah, she's

Scott Benner 45:47
your mom's the answer. People take their parents for granted. You know what I mean? It's not till you're much older that you think about it like you'll look back on this moment. One day, you'll be like, 25 or 30 or something. You'll be like, I was on a podcast when I was 13, and this guy asked me, How did I feel about my mom having cancer? And I was like, Yo, low. You know what I mean, baby, I think she texted me, or maybe she made smoke signals. I don't remember how she told us anymore. And you're gonna think like, Oh, what a little dick I was, but you're not, you're just 13. And like,

Devon 46:16
I remember not Dan. I'm pretty sure she told us to come up to her room.

Scott Benner 46:22
Is that right?

Tammy 46:26
So interesting, good.

Devon 46:30
I'm pretty sure you said it not. This shouldn't be like something that like, if we should really be scared of worried about I'm pretty sure

Tammy 46:43
you're getting there.

Devon 46:46
Am I somewhat close?

Scott Benner 46:47
When you were standing there, were you like, Yo my game's on pause. Let's hurry up.

Tammy 46:52
Okay. Well, that was, that was your brother. He was he was annoying me. He was playing with the dog and not really paying attention to what I was saying. Stop messing with the dog for four seconds so I can say something.

Scott Benner 47:08
Tammy, do you think they don't care, or do you just think that it's a function of

Tammy 47:11
their age? No, no, they're it's not at all that they don't care, that they they care in their own separate ways. Devin had questions, my older son is kind of like internally, processes things more whereas Devin is more outspoken, and that is exactly what happened. I told him to come sit down, and I started with, I'm not worried about this, so you don't need to be worried about this. Okay, this is what's going on. And I by this point in time, I had processed it. Had been several days. I had processed everything. I'd spoken to the surgeon. We had a plan, we had a date, we had all of the information. I didn't want to talk to them about it until I had all of the information and and it processed it myself first. So I did lead with that, and he did. He did ask some questions. And one thing that always stands out for me is that I asked him, or I told him, I said, I might need your help. I might need you to help me laugh at this sometimes, because that's something that we did when he was diagnosed with type one. We laughed at it a lot so that it wouldn't kill us, you know, that kind of thing. And I said, I might need you to, you know, help me out here and there and and laugh at it. Yeah? And he did that. And I really appreciate that.

Scott Benner 48:17
That's awesome. Devin, can I give you some advice? Yeah, yeah, empathetically impact and listen to people when they're talking and genuinely be concerned about them and what they feel like. Or one day you'll have an apartment while some ladies living in your house too. Okay, okay, all right, yeah, you got to care about what people are saying. You know what I mean? Yeah, yeah. Be connected.

Tammy 48:40
That's funny that you said that, because literally, yesterday, when we were on a we were on a walk, he said I was annoying him. And I said, if I'm not annoying you that I'm not doing it right.

Scott Benner 48:50
Why was she annoying, you Dev, and what was she doing? I'm pretty

Devon 48:53
sure it's because I said I wanted to join football, and she kept saying a bunch of like, oh, you can't do this or this. I want you to really think about it. And it's also partially because my blood sugar is at like, 321 so, oh, you're, are you having

Scott Benner 49:08
trouble with your blood sugars right now? Kinda, I'm at 250 what's going on? Tell me what you think's happening. I'm sick. Oh, you're not feeling well. No, that's why you were snotting earlier. Yeah. What kind of sickness Do you have? I don't know. Oh, just a cold, probably, yeah, and that's impacting your blood sugars. Now, what are you doing about that? What kind of pump you got? A pump, or are you MDI, yeah, I'm on the Omnipod. Okay, Omnipod five, or Omnipod dash. What's Omnipod dash? The old version. You're on five. Wait, what's 75 dash, though, it's

Tammy 49:44
the old version. It doesn't have the algorithm.

Scott Benner 49:46
Oh, so it's not keeping up with your illness right now, not really. Have you tried bolusing, yeah, yeah. Are you sure

Devon 49:57
during the process of you recording this, I've. Give myself two units insulin, very

Scott Benner 50:03
nice. While you're bolusing, it's probably taking away your basal, because it thinks you don't need the insulin you just gave yourself, right? Maybe, maybe, how about definitely.

Tammy 50:13
What did you do in order to stop that from happening? Devin, you know the answer to this, did you override?

Devon 50:20
Oh, wait. No, sorry, sorry. I meant I overrided three times and gave myself one unit every time.

Scott Benner 50:25
Okay, yeah. Can I suggest something? How long has he been on what they call the Omnipod five? How long you been using that?

Devon 50:32
It was only, like, a few months after I've been I was diagnosed, okay, Timmy,

Tammy 50:37
it's going on a year and a half that he's been using

Scott Benner 50:39
up. How does it normally work for him? How do you like the settings? It works really well.

Tammy 50:43
Okay, we've been very happy. What I'm thinking is I might have him change it before he goes to school today, because it'll learn from the last one that he needs more that might help with the illness

Scott Benner 50:53
and the high sugar. I was going to ask you, do you think his insulin needs have changed since he's on Omnipod five

Devon 51:01
meaning, yeah, I can answer that, and that's a definite yes, yes.

Scott Benner 51:04
So then the initial settings you use to set the Omnipod five up are probably like, if you switch into manual, they probably wouldn't

Devon 51:11
do well. I mean, I'm pretty sure the basal head for manual is higher than it's giving me right now. I'm not 100% sure about that though. Yeah, you have

Tammy 51:23
changed the settings in manual a few times to

Scott Benner 51:27
better reflect what's happening. Yeah, I would switch it over to manual for a couple of hours and see if you can't get your blood sugar to

Tammy 51:34
come down that way. Yeah, he's tried that before, not not this time around, but he's done that in the past.

Scott Benner 51:38
Does that work for you? Yeah? Sometimes it does Yeah, because then the basal stays on, and then your, your Bolus has a better chance of working, and then just kind of got to get out of it before you get

Devon 51:48
low. You know it, yeah, it says it, if I switch it to manual, give me point five an hour, and that seems great.

Scott Benner 51:55
So is point five an hour about, about what you think your basal is? Well, yeah, yeah. How much do you weigh? Devin 124, 124, what kind of football you want to what position you want to play in football?

Devon 52:12
Insanely skinny, so I'd probably have to do a wide receiver.

Scott Benner 52:16
Can you catch? Yeah, are you fast? Yeah, all right. Well, there you go. You're all set that. And Mom, you don't want to play football fast

Devon 52:24
enough that I don't have to sprint to in baseball to be a to be fast.

Tammy 52:28
So, oh, it just means anything he was, he's a catcher in baseball, and he was my number two hitter.

Scott Benner 52:34
So are you coaching the team? Tammy, I coach the baseball team. Yeah, nice. Your mom's the coach. How does that go over with the boys that okay, that's fine, yeah. Do they ever look at her creepy? You know what? I mean? No, they don't. Good, good. We don't want that. Okay, you catch huh? Yeah, yeah. Can you make the throw in a second easily? All right, you're skinny, but you're tall. Are you tall? Yeah, I'm five, I didn't know you're so tall. Five. Five. How tall do you think you'll be one day? Are your parents tall? No, they're holding you back. They're holding you back. Devin, your brother have any height?

Devon 53:13
Oh, definitely. No. He's like 410

Tammy 53:19
he is five foot. Thank you, point of contention here in the house.

Scott Benner 53:24
Thanks. Scott Devin, how are you gonna How you gonna play professional sports if you're 571 day? What's going on here?

Devon 53:31
I mean, I'm hoping I'm gonna get tall, because my my one my uncles, is tall, so,

Scott Benner 53:35
yeah, which one? How tall is he? Was he 511

Devon 53:40
I'm pretty sure he's like, what sits too. That's hot. Yeah, yeah, that's six, one or six,

Scott Benner 53:45
two. Which of these sports do you prefer the most? Dev and you like baseball or football better to play

Devon 53:51
baseball? Yeah, baseball

Tammy 53:54
is a good game. You haven't played football yet, other than I haven't. I really

Scott Benner 53:58
haven't. Yeah, wait till somebody hits you so hard that you can't breathe for a couple of seconds. That'll change your mind real fast. That happened to me in baseball. Catcher, oh, you got, you got jacked up at home.

Devon 54:09
I get, I get blown over all the time, but I keep blowing the ball so

Scott Benner 54:15
well, they still let them do that Tommy running. They can't even do that in the pros anymore. Yeah.

Tammy 54:19
Little leagues a little different depending on who the umph is. It's a different answer. So, well,

Scott Benner 54:23
you're 13, like, are you on a 5070, field now? Or you're not playing for, I don't know what that means. You're not on a little league field anymore, right? The field got bigger.

Tammy 54:33
Yeah, it's, it's, I think, one step down from

Scott Benner 54:37
major 6090, yeah. So, Devin, listen, when you're playing Little League, it's 4660 46 feet from the pitching rubber to home plate, 60 feet from home to first. And then there's a jump up, 50, 7050, to home plate, 70 to first. And then, usually, I don't know when kids like make the next transfer, but then it's 6096, Defeat the home 90 feet the first place. That's when you find out if people can play or

Devon 55:03
not. 6090, is the major league, right? Yeah, like

Scott Benner 55:08
your high school field or major league or something like that, yeah, yeah,

Devon 55:12
all these kids I think, um, I think the it's like 82 feet to each base.

Scott Benner 55:18
You made that number up. 5070, 6069,

Tammy 55:21
no, that's not 82

Devon 55:23
feet. I feel like it is. Are

Scott Benner 55:26
you counting your steps? Maybe you're taking 82 steps to go that far. Who knows? Definitely, no, because you're so short, your steps are small. You know what I

Devon 55:33
mean? I mean if it was my brother, yeah. Oh, my God, wait,

Scott Benner 55:37
Kevin, keep playing, because there's no more fun than when the big, strong kids get to the big field and find out, all they can do is fly out to right field. It's awesome. And they don't know how to play other than that, they just, they just used to hitting the ball, and it was like, it would go over people's heads, and now they're like, why isn't it happening anymore? Yeah, that's that's fun watching the slow kids try to run the bases on the Full Size field, and then they get see it come. They get back in the dugout, and you can see it on their face. Like, I don't think I can do this anymore. There are so many. I watched a kid. I'm not kidding you. I watched a kid in the outfield when the field got all the way bigger. I think the kids were like 1514, or 15 at that point, and a ball went up in the air, and the run to get to the ball was so far, and it was just so frustrating for him, like he couldn't track it, he couldn't get to it, like they got it took him way too long. And as he was walking off the field, I think he was in right field, he was walking down the first base line after the inning was over, and he got to the part of the fence where his dad was, and he looked at him, and he said, I'm not doing this anymore. And I never saw him again. After that, a kid had been playing baseball his whole life.

Devon 56:49
I mean, the few seasons before, like before I moved up to the bigger field, I was insanely slow.

Scott Benner 56:59
You're quicker now,

Tammy 57:02
he figured out how to not run flat footed.

Scott Benner 57:04
Oh, look at you. You're figuring it out. That's awesome. I'm just telling you this kid back then, I would have thought, like, that's crazy. He's like, one of the best kids on this team. And as soon as the field got bigger, he was overmatched. And he just was like, he literally looked this down. He's like, I'm done.

Tammy 57:17
And yeah, so strange. Yeah, it's def we've moved I think he started playing when he was nine. And I think we've been on three different sized fields, and it's always a challenge. Yeah, that really is the time I was

Devon 57:29
supposed to be, like the older group, like the older age we had to combine with the so it was like when I was what, I think, 11, yeah,

Tammy 57:41
it was when you were 12, because we were moving up to that size than that the following year. Oh, they combined 12 you and 14 you for a fall season because they couldn't get enough kids to sign up. So we moved to the bigger field, and you were going to be on that field the following summer anyway.

Scott Benner 57:56
I mean, I'm a little disappointed about something about your story. I didn't hear the part where I was really the hero. What happened there?

Tammy 58:05
Talking about baseball, talk about me again. How did that get left out? What happened? No, it didn't. It didn't get left out differently.

Scott Benner 58:14
Use more effusive words, podcast, yeah, it's not as good.

Tammy 58:18
Like I not found the podcast. Keep going. I mentioned the things that you talked about on the podcast that made me start thinking, and make me start wondering, and I started digging into things, and that's the reason. But I mean, I'm really thinking Devin because he was diagnosed. Now I

Scott Benner 58:32
didn't like how Devin jumped ahead of me in that story, and also, also the baseball thing was getting boring, so I had to pivot quickly. Just now, there's nothing.

Devon 58:43
There's one talked about the one time where a kid crashed out because my mom high fived him after the game.

Scott Benner 58:54
Your mom punched a kid. No, no, no. What happened?

Tammy 58:59
Or version? Devin,

Scott Benner 59:02
let me say something. Here. I want you to take this to heart. Okay, I like you. I hate the way you tell a story, and so I want you to like I think this should be a focus of the next I'm going to say 24 months of your life. Okay, I like you. I like you getting better at storytelling because I get you got a nice personality here, but I need it needs to come out a little quicker. You know I'm saying, Yeah, all right. So tell me the story I really focus on. Listen to me brevity. I want you to think short to the point, funny, accurate, honest. Tell me about your mom and the kid go. So after the game, stop you. Please don't start with so you make me want to punch you in the mouth. Okay, that's illegal. Go right to the story. Go try again. So don't My God, Kevin, you cannot say no. Why did you do that? No, no, no, no. Listen, focus. And start the sentence without saying so just

Devon 1:00:03
after, after a baseball game, we always line up at home played high five the other kids and say, good game. And there's this one kid who just walked by and pulled it back for me, like his hand out for me and my mom. He like, pulled away, and then my mom grabbed his arm and high fived him, and he started like yelling at her, and did not touch him, because he apparently he just doesn't like being touched by people he doesn't like.

Scott Benner 1:00:31
Is this story about how your mom assaulted a child? What is happening?

Devon 1:00:36
It's not as though were the cops called. No

Scott Benner 1:00:41
wait. Oh, what good? Oh, what

Devon 1:00:44
the one time where, no,

Scott Benner 1:00:46
no, don't talk to me. I'm talking to

Devon 1:00:48
you. Fight another coach.

Tammy 1:00:51
There's a lot of good stories. There's a lot people

Scott Benner 1:00:54
fist fighting. Almost, my God, the middle of the country is just, it's feral. You know what? I mean, I guess you have to be to live in that cold you know? I mean,

Tammy 1:01:03
that coach called one of my kids bush league, and then he called me bush league. No, he called. He called the the coach's kid, my assistant coach's kid. He called him Bush like, how old are they? No, he called. He called me bush league because I ran. That was later. He said, I'll meet you in the parking lot. And I'm like, what is happening here? These are 11 and 12 year old kids at this point.

Scott Benner 1:01:28
Like, what do we you were gonna have to fist fight a man because of an 11 year old baseball

Tammy 1:01:32
game this? He said this to my assistant coach, be

Scott Benner 1:01:36
over what I wasn't please. Please tell me over. What was this over?

Devon 1:01:39
Oh, so it's because he called me. And I'm pretty sure one of

Scott Benner 1:01:44
the if you say Bush again, Devin, I'm gonna, I am gonna come to Chicago and smack you. I just want you to say, okay, kid, yeah. But why, Devin? Why widely call you

Devon 1:01:53
that? He called. He called me that because so I was like, Have I was on third

Scott Benner 1:01:58
if you say so again, I'm gonna come to Chicago and smack you in the head. I cannot say. Why did he call you bush league?

Devon 1:02:05
I was on I was on third base. I was like, halfway to home when the catcher threw the ball back to the pitcher. I stole and

Tammy 1:02:15
got trick play. The answer is, trick play,

Scott Benner 1:02:17
yeah, Devin, let me say this. Did you run to home when the catcher threw the ball back to the pitcher? Yes, could you have just said that for me?

Tammy 1:02:29
Brevity, could have just said trick play. You

Scott Benner 1:02:32
could watch this. Devin, ask me what happened. Say, why did the guy call you bush league? Why did the guy call you bush league? I was halfway home, and when the catcher threw the ball back there, pitcher, I ran home. Oh, I understand it. See what I just did there. Cut out a lot of the extra words, okay, now, and I didn't say so or bush league, Devin, you're gonna be okay. I don't want you to worry all right, but we got some things to work on here. I know you're young, but I want a little more focus on this. And did you find it to be like, did you think you were doing something when you stole

Devon 1:03:07
home? No, because that's just part of the game. Do you steal

Scott Benner 1:03:11
signs? Devin, yeah, you do. Do you relay them to the batter?

Devon 1:03:16
Oh, not, not in that way. I like, there's this one team, they had a bunch of signs and that if I saw it, I would tell the pitcher to step off and get the runner out.

Scott Benner 1:03:29
Okay, all right. Well, you're much wrong with that. All right, okay, I'm good. Now, Tammy, after this happened, there's a grown man, ostensibly a father of another child, like somebody who's in charge of another human being who then looked at your by the way, wouldn't he wanted to fight you, because you're the coach, but I guess he's like, Well, I guess I can't hit a girl, so I'm gonna go with the other guy. And he said, he basically, I don't, I hate to sound like it's 1986 but he offers him out, tells him to come to the parking lot where we will later fight about this. Is that correct? Yes, and he was serious.

Tammy 1:04:03
He was dead serious. This guy had been a problem in the league for quite some time, and ended up leading to him not being allowed to coach anymore. But what the really obnoxious part is that my assistant coach is very soft spoken, very quiet, very nice guy. Whatever was going on got him fired up, and he actually walked out and started talking to him, not yelling, you know he but he was talking to him calmly, like, hey, maybe we don't need to do these types of things. These are kids. Let's, you know, we've got kids crying because of how you're yelling at them. And you know this isn't appropriate. And you know it takes, it takes a lot for him to get fired up. And he was

Scott Benner 1:04:36
pretty fired up. And did you cry? No, Devin, never cry while you're playing baseball, please? I mean, listen, you can cry, and there's nothing wrong with crying, but not at a baseball game. Hey, listen, Tammy, if they would have went out to the parking lot, who do you think would have won? A good question. It was the guy who's juiced up on Old Milwaukee and heroin. Is that the guy that would have

Tammy 1:04:56
been doing I think that might have been the way that it went, but I. Also know that we have on that team, we had several parents

Devon 1:05:05
that coached football and

Scott Benner 1:05:08
some other things. Make a general announcement. I want to make a general ask everybody listening. Please calm down. Everybody just calm down. Yeah, just relax.

Devon 1:05:17
Can we refer to the opposing coach as Bob? Why?

Scott Benner 1:05:22
Why? Why? Oh, God, you know what? I fucking hate myself for asking this. But why?

Devon 1:05:28
Devin, I don't know. Oh, Devon.

Scott Benner 1:05:33
Devon, listen, I can be in Chicago in about 14 hours. Okay, if you can meet me at a rest stop, I'm just gonna whop you in the head one time, then I'm gonna leave. Okay, and your mom, she doesn't want to get into my school. I'll find you. Don't you worry, kid, okay, oh, I'll tell him, yeah, your mom will give you up in three seconds. She likes a dog better than you. She's barely feeding you. What are you paying attention to that you don't understand this woman,

Devon 1:05:58
she's definitely not barely feeding me. I eat everything. All right?

Scott Benner 1:06:02
Well, I'm glad you're being fed. This is nice. I've had a nice time here. Now, listen, here's what I know, and I'm being serious, Devin, you seem like a nice kid. I'm excited for you and your pathway through life. I think it's going to be awesome. I think you're going to be an engineer who's married to a model and the first five seven quarterback in NFL history, okay? And I'll tell you one thing I know for sure, if you make it to the NFL at that height, the bears are going to draft you, because they are terrible at drafting quarterbacks. I'm super happy for your mom. Your mom's doing well and she's healthy. If this podcast had anything to do with her being well, that really is touching to me. I'm super happy. I hope you get over your illness more. I'd like to see you do a little more basal and and get that blood sugar down. You can get it down. You just need a little more insulin right now, and an A I D system might be getting in your way instead of helping you. So maybe moving to manual while your mom is helping you could be valuable. Also, I feel like you have not had to go to school today to make this podcast. Is that true? Yeah, for the first time, is it I have not been thanked yet? Why is there not been a thank Hey, Scott, I really appreciate you having me on this podcast. By the way, bamboozled. Do you know the word bamboozled? Devin? Let me look at something here for you. I'm looking at the setup for today. Says Tammy, and then it says, What are the themes you hope to cover, self advocacy, teenage type one issues, thyroid cancer, nowhere did I hear I'm gonna slip my little kid into this. Okay, you understand, but here you are, and I let you be here, and you don't have to go to school. I mean, I don't remember any of that. You think I'm paying attention. And so, Devin, oh, my God, tell you the same thing I told my neighbor yesterday. Okay, Devin, watch me tell this story about a door and make it interesting. I'm gonna teach you something, Devin, this is like a TED talk for you now.

Devon 1:07:59
Okay, well, first off, guys, the computer is dying.

Scott Benner 1:08:03
Gavin, you're gonna be okay. Hang in. Maybe the wrong charge. Evan, listen to me. My thing's only gonna take 30 seconds. I'm a pro. I'm outside working in my yard. Yesterday, my neighbor comes over to me, asked me to bring up his trash cans because he's going away on vacation. I said, no problem at all. And I said to him, Hey, I was driving past your house the other day with my wife. My wife says, Has Mike's door always been red? And I said, How should I know? And she goes, we've been living here for 20 some years. I said, I don't know what color the guy's doors and he looks at me weird. He goes, Scott, my door used to be blue. You made fun of me about it three years ago. And I was like, Mike, I don't remember that. And he goes, what? I was like? My guy was at the store today, my wife asked me to get deodorant for her. And I wanna be clear Devin that I've known my wife for 30 some years. I've been married for 29 years, that that woman believes that I know what deodorant she's using is insane. Okay? Like, all I know is that her deodorant is blue. I do not know which one she uses. I could not possibly tell you that I do not recall what color my neighbor's door is, even though I've apparently talked to him about it in the past. And why is that, Devin I don't know, but that's who I am. Okay, I'm not gonna remember stuff like that. What I explained to him was that's not what you want from me in this life. What you want from me is the talking that I'm good at remembering things, not so much. And do you see how that was fun, even though it's got nothing to do with anything. And if I told you that story, like disconnected from anything else, you'd be like, why is this guy telling me this? But somehow you're oddly compelled while I'm telling you. Do you hear that? Yes, this is what I want from you, Devin. This is where our storytelling needs to get at some point. And I'm not the best at it, but Devin, I'm much better at it than you are. Okay? And so I want you to get a lot older than I What does that have to do with anything? I was this

Tammy 1:09:48
chatty the fourth time you've told us we're old.

Scott Benner 1:09:51
I was this podcast, Devin, do not pick her with your mother while I'm yelling at you. I was this chatty when I was 13. Okay? I want you the dogs barking my. Dog just figured out too, what's going on. He's like, these are not feeding me what's happening. And Devin, don't curse in front of your mom. Okay, although I've cursed in front of you while your mom is here, but I saved her from cancer. So really, I can do

Tammy 1:10:15
it, yeah, I may. I make it a very like normal thing, so that they don't feel like it's not normal.

Scott Benner 1:10:24
All right, Devin, and here's the last thing I'm gonna tell you, anybody who wants to fight with somebody at a child's baseball game needs to go to therapy. You understand that there's something insanely wrong with them, okay, all right. And for those of you who have almost gotten to a fight at a baseball game and now you're feeling insulted by me. I wasn't talking about you. Okay, you're fine. Everything you do is awesome. Okay, Devin, when we're done here you go tell your mom you love her, give her a nice hug. Okay, that's not gonna No, I want that, and I don't want you making fun of your short brother. Okay? And Cammy, stop assaulting children at a baseball fields or whatever it is you did a poor boy. Hey, I'm just

Tammy 1:11:06
trying to teach sportsmanship, whether you like me or not, or you like the other team or not, you still need to tell them good game and give

Scott Benner 1:11:11
them a high five. Swear to God, and that stuff's not pizza and the bears suck, Devin. You remember all

Tammy 1:11:17
this? Okay, all of our teams suck, Devin.

Scott Benner 1:11:19
Have you ever been to the East Coast? New York, Philadelphia. Have you ever been over here in the Northeast?

Tammy 1:11:25
Come Get over here. Now. He's over here. He asked you if you'd ever been to the east coast before?

Devon 1:11:31
No,

Scott Benner 1:11:32
all right, let's maybe get a trip together. Okay, I don't think I have either. Go see civilization, see how things are done. Okay, you're out there with your lakes. You guys got a lake or something? We do have a lake. Okay, come see the ocean.

Tammy 1:11:48
Devon, it's awesome. You've seen the ocean. No way you haven't. You've been to Florida. You did not, haven't seen it.

Scott Benner 1:11:57
Okay? Your mom took you to Florida and didn't let you see the ocean. I didn't think this is a baseball thing.

Tammy 1:12:02
Baseball? No, no, they. His grandmother, on his dad's side, lives in Florida, so they've been there to visit a few times, and apparently never made it to the ocean. I think she's and she's middle of the state, though, I think she's like, near Orlando, yeah, that's like, the Everglades or something, right? I mean, he also ate his Sour Patch Kids, so it wouldn't surprise me, he didn't take him

Scott Benner 1:12:21
to the beach. I think the Everglades are south. Would you go to the Disney go to the the park? Yeah, yeah. How was that? It was good. It was fun. I hear what you're saying. I'm going to be down there in a couple of weeks and giving a talk in Orlando. Devin. This will probably come out after that happened. When am I going? One, two, touch by type one, touch by type one. I gotta leave in like, 17 days. I gotta fly down there. All right. Well, whatever the flying part I don't love, but the rest of it's good. Devin Do you think anybody would ever ask you to come and speak at an event? No, that's right. Good job. Let him be honest. What's this?

Tammy 1:13:01
No, he's my twin. He is going to get there. I can. He's he's got the wit, he's got the, you know, like the quick remarks and stuff like that. Maybe that was didn't come out so much today, but he has that potential in the future for sure.

Scott Benner 1:13:15
Devin, I love you. I just want to say that. Okay, I know your mom doesn't, but I do okay. If it was between you and that dog, I'd throw that dog right out of the house and keep you I want you to know that. Okay, I could see him doing a podcast someday, all right. Well, listen, it's not as easy as you think.

Tammy 1:13:31
Well, he's getting all these traits for me. You talk to strangers and get them to tell you their life story, and that's not all that different from what I do every day. And I feel like he's gonna get that figured out. Piece of, piece of me,

Scott Benner 1:13:42
honestly, I'm gonna tell you, man, keep listening to podcast. Doesn't have to be mine, but keep listening to people who know how to have good conversations and like you'll, you'll pick it up along the way. Also, Tammy, you don't want him to play football, right? Is that you're afraid he's gonna get hurt?

Tammy 1:13:55
No, no. That wasn't what that conversation was about. The the conversation was, he, he is a golfer, and has been golfing for a long time, and he wants to be in the marching band. He's been in band for three years. And all those things happen at the same time. They're all full. So for high school next year, it's all fall sports and fall activities and stuff. And I said, Well, you need to really think about which of these things is your priority, and and don't just jump into football because your friends invited you to and said you should do it. Let's think about all of the pieces and what you enjoy the most, what you think you're the best at, and what your priority is and what's important to you. I said that for apparently far too, too many minutes, and then it would and then it got annoying. So No, it's not that I don't want him to play. I don't think any parent loves the idea of a kid playing football. I don't think that's true, but go ahead. But yeah, I mean, it's some some do, I guess. But I, I just want him to make the decision

Scott Benner 1:14:53
be, be a very thought. You're gonna start a new thing, or he's gonna have to stay with something. Yeah. Band. You What do you play in the band? Symbols? What do you do there?

Devon 1:15:03
Devin, the baritone,

Scott Benner 1:15:05
Baron, baritone, baritone and trombone. Oh, you can play the trombone. Yeah, no kidding. Well, you're self taught.

Tammy 1:15:17
Yeah, the trombone is, that's a recent addition. He's going to be playing that in in the jazz band this year,

Scott Benner 1:15:23
trombonist in the dress in the jazz band. If I made that the title this episode, people would be confused the entire time they were listening.

Tammy 1:15:31
I think people are going to be confused the entire time they're listening anyway,

Scott Benner 1:15:35
yeah, no, I'm pretty sure that's true. This is very what the point of any of this was? I don't know. It was very bush league, all right, I really appreciate, I just sincerely appreciate. I hope we had fun. I really do appreciate that you came on and Tommy, seriously, I'm glad you're doing well,

Tammy 1:15:52
well, and thank you for existing. I mean, that's really what it comes down to, you know, if you weren't doing this, then I never would have dug a little deeper. I wouldn't have advocated for myself as much as I did without the knowledge that you you've put out there. I know that everybody talks about this constantly on on the page, and on other podcast, you know, and other episodes and stuff you know. Advocate, advocate. It's, it's been such an awful, awful journey as far as interactions with our medical staff and and things like that. You know, it's something that needs to just keep being said. And if this, if this story, resonates with anybody, then great. Because honestly, I would still be sitting here with my entire thyroid feeling like crap, not knowing why and who knows when it would have gotten found.

Scott Benner 1:16:39
Yeah, what could have happened, by way, right? Well, I agree. Yeah, everybody, please advocate for yourself and Devin, listen, if you ever need anything, don't hesitate to send an email and I'll get back to you in four to six weeks. Okay, all right, man, thanks for coming on, brother. I appreciate it.

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#1639 Heavy - Part 2

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B is  the mom of a T1D son who was diagnosed at a 16 months. He is currently 2 and they are about 9 months in to managing diabetes. 

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