#1625 Three the Hard Way

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Linda shares her family’s journey—one daughter with type 1, another antibody positive, and the oldest with Crohn’s—navigating diagnosis, anxiety, and Trial Net.

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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
Friends, we're all back together for the next episode of The Juicebox podcast. Welcome.

Linda 0:15
My name is Linda, and I have three daughters. My youngest is my type one. My middle is TWO, antibody positive and in trial. Net. If

Scott Benner 0:26
this is your first time listening to the Juicebox podcast, and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com up in the menu and look for bold Beginnings The Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. This episode of The Juicebox podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about Miss boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today at Medtronic diabetes.com/juicebox this episode of The Juicebox podcast is sponsored by the twist a ID system, powered by tide pool, that features the twist loop algorithm, which you can target to a glucose level as low as 87 Learn more at twist.com/juicebox that's twist with two eyes.com/juicebox. Get precision insulin delivery with a target range that you choose at twist.com/juicebox. That's t, w, i, i, s, t.com/juicebox, this episode of The Juicebox podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour, next.com/juicebox

Linda 2:24
My name is Linda, and I have three daughters. My youngest is my type one. My middle is TWO, antibody positive and in trial

Scott Benner 2:33
net, and the oldest one is just keeping their head down. She's got Crohn's disease. Nobody gets out clean, huh? Nope, none of them. That wasn't a joke about Crohn's. That was just, I meant about autoimmune in general. Well, three girls, yes. How old are they?

Linda 2:51
My oldest is 22 and then 20 and 17. Wow.

Scott Benner 2:56
What is it can I just before we get to the other stuff? What's it like having three daughters that close in age.

Linda 3:02
It's exhausting, but fun,

Scott Benner 3:05
okay? Because the fun parts are fun and the exhausting parts are exhausting, right?

Linda 3:08
Yeah, that's right, they're great. They get along. They do really

Unknown Speaker 3:12
well. That's awesome. Are you married?

Linda 3:15
I am okay. My husband and I have been married for 24 years. 24

Scott Benner 3:19
years. Has he ever watched them do something crazy and turn to you and looked at you like, you know, this is like, they get that from you, right?

Linda 3:26
No, he's usually just watching them and very thankful that he has daughters he never really wanted, or felt like he needed a son, really. Oh, yeah. Well, then I get to deal with all this stuff. Oh, I see he's, he's a little more hands off.

Scott Benner 3:40
Oh, he's like, I don't know about this girl, stuff you handle that

Linda 3:43
That's right. Oh,

Scott Benner 3:44
it is out. Yes, is there autoimmune on his side of the family? Your side of the family anywhere?

Linda 3:51
Yeah, he has thyroid disorder, hypothyroidism. He's never really been tested for antibodies, but his mom also has thyroid issues.

Scott Benner 4:02
Okay, we're not sure what Hashimotos is. What you're saying, No, we do not know for sure. Yeah, anybody else in the

Linda 4:09
family my mom has right now? Oh,

Scott Benner 4:13
there it is. There it is. A little on both sides, right? And, yeah. And just like that, who was diagnosed first, the type one, the type one, and how?

Linda 4:21
How long ago she was diagnosed? Four years ago,

Scott Benner 4:24
four years ago. So she was like, 13. She was 13. Did I keep all those numbers in my head? 2220, and 17? Wow. I might be good at this before I'm done. I mean, I'm not there yet. I'm having a good feeling like I'm cresting the crest in the hill. Wow, that's something. So she's 13, she gets diagnosed with type one. How does it present like? How do you even know she needs a doctor?

Linda 4:49
She hadn't been feeling well, so she was two weeks before eighth grade when she was diagnosed. And I would say, looking back over seventh grade, she was just having. More days that she just wasn't feeling well, nothing major, but like upset stomachs and that kind of thing. Yeah, through the summer, she started having episodes, particularly like when she was showering, where would she she would feel dizzy and like she was going to pass out. So at her well visit, which was like two weeks before her actual diagnosis. We talked about it, and they basically just test her her blood pressure, yeah, and I think they tested her hemoglobin and said she's got orthostatic hypotension,

Scott Benner 5:37
okay? And, and did they not find that odd for a 13 year old,

Linda 5:41
apparently not. The nurse wasn't super concerned. She just said, your blood pressure drops when you're starting to feel weird. Drink a Gatorade, it'll help you feel

Scott Benner 5:50
better. But in actuality, she was approaching DKA, Yep, yeah. So close. We were so close to figuring it out. Well, listen, it's, I mean, Linda, you must know too, like it would, it would be a stretch for somebody to off of that to say, well, we should check your blood sugar. You know that's,

Linda 6:08
yeah, I know, yeah. And she wasn't losing weight yet. That's what like after we discharged from the hospital, they brought us right back in, and the doctor said she had not had significant weight loss. That's why we didn't look for it, yeah.

Scott Benner 6:22
Well, what happened next, though, I mean, and how much Gator did she drink? Needlessly? She

Linda 6:28
was probably drinking one or two a day,

Scott Benner 6:31
which frequently she didn't feel well,

Linda 6:34
yeah, exactly, gotcha. So she she just over the next two weeks, she just started getting more and more, you could tell something was wrong, she started to lose weight, although I wasn't, we weren't weighing her to know that for sure, but kind of at the end, you could see that she lost a good amount of weight. Yeah, yeah. Two weeks later, it's a weekend, it's a Sunday, I know she's not feeling well. I can see it the night before, actually, she'd started to feel better. She hadn't been eating much, starting to drink lots of water, and she started to feel better. Was on a Saturday, and went with her sisters to 711 and got a Slurpee.

Scott Benner 7:08
I've been at a Slurpee in forever, yeah.

Linda 7:12
Well, they're good, yeah, but she came home and threw up, and then my husband said she's got diabetes. And I said, no, wait, like there's, there's no way. Why would she have diabetes,

Scott Benner 7:24
Mister, I'm not involved. Knew that was diabetes. How do you figure that out?

Linda 7:27
Figured I think he thought, well, she just drank all that sugar, and her body needed to get rid of it, right? Okay, so that's his thinking. And I, I said, there's no diabetes in our family. Why would she have diabetes?

Scott Benner 7:39
You didn't say I should have married a smarter man. That's probably, is that what you were thinking when he said that? You're like, oh, dummies. Finally got something to say, and that's what he came up with. I really, I've been married a long time. I really feel like, I know how you girls think sometimes so you're like, my mom told me not to marry him. He ends up being right by mistake. A little he was right, but once he says that, what do you end up? How do you manage that? Like, how do you how do you hide your disdain for him, and then move forward?

Linda 8:11
I just, I just said, No. I said, There's no way she has diabetes, she's got the flu or something. I know something's going on, but so the next day, I know, okay, we've got to go back to the doctor plane to call Monday morning, and it was later in the evening, like five o'clock, and I just looked at her, I said, Do you want to go now? And she said, Yes, okay, so

Scott Benner 8:33
yeah, like she went to it. We don't want to wait any she knew she couldn't wait any longer. Yes, she knew,

Linda 8:39
right? She knew she was feeling so bad and something was wrong. Yeah, clearly, gotcha.

Scott Benner 8:43
Did your husband go with you? I'd hate for you if he was there when, when you found out he was right? No, no, I went on my own with her. Good, good, good, smart. What was worse, finding out your daughter had diabetes, that your husband was right about something, and you were

Linda 8:57
gonna have to tell him definitely finding out she had diabetes. Yeah, no, I know. So you went to urgent care, then, well, we went to urgent care, but it was closed. Okay, so then we went to the emergency room. Gotcha. Gotcha. They

Speaker 1 9:10
tested her blood sugar right away based on just how she looked, yeah,

Linda 9:15
and the fact I kind of gave the same story. She'd been having all this dizziness. This is what they diagnosed her with. She's getting more sick. Talked about how she threw out the night before and her blood sugar was 410,

Scott Benner 9:28
wow. Hey, did you mention to the ER people that, er people, I know there's a better way to say that, but did you mention to them that your husband thought she had diabetes? No, I did not. No, okay. I was just wondering if you led them and no, okay, well, that's got me. It's cool. They figured it out right away. She was 410 that's not like crazy, right? Was she in DK,

Linda 9:49
though she was, like, just kind of starting the process. She had large ketones. She like, she didn't have any organ damage going on at all. But. Yeah, she was diagnosed as being a DKA, yeah.

Scott Benner 10:03
Wow. Did you hear that story on the podcast recently where the the kid ended up with like, like, vomiting up, like, dead tissue from DK, no, I didn't hear that one. Don't listen that one. I don't make it. Was that first time somebody said that to me. So, okay, so not, not too terrible then. I mean, other than the diabetes and being in the ER and everything, but like, could have been worse. How long is she there? What do they tell you? What's the teaching like, what do you go home? Understanding.

Linda 10:31
So we had to transfer to a different hospital, because the first one we went to, apparently they don't do pediatric endocrinology, okay? So we had to go to the bigger hospital. So we were there. Went in on a Sunday. We went home on Wednesday, the first 24 hours was really still in the ER, the whole time. Okay, once we got up to the room, yeah, they started. We learned how to do injections, how to calculate carbs, all the basic stuff, what to do, about ketones, what to do, and she's low.

Scott Benner 11:04
Yeah, okay, so just basic, like, top level stuff, yes, where would you say you're at now, four years later, with the understanding, like, How's she managing today? How's she doing?

Linda 11:13
I think our understanding is much better. She does pretty well. She's got a lot of anxiety that impacts her management. So there are times like at school, she'll skip dosing at lunch and things like that. But she's doing better. I mean, each year she's gotten better. How about that?

Scott Benner 11:33
Do other people in the family have anxiety? Did she have it before the diabetes?

Linda 11:37
She had anxiety before diabetes, and yes, there is anxiety and other in her oldest

Scott Benner 11:43
sister. How about the family line, too? I tend to

Linda 11:47
have some anxiety. Gotcha. Yeah. Are we Irish? I have a very tiny amount of Irish in me,

Scott Benner 11:55
just a tiny bit, yeah. What is your genre? What background are you?

Linda 11:59
I'm half German, a lot of English, and that little bit of Irish,

Scott Benner 12:03
okay, I'm not finding common words today. I said hospital people, and I asked about your genre for your background,

Linda 12:11
but I understood what you meant, at

Scott Benner 12:14
least it's coming across that way. How does the anxiety impact the management she

Linda 12:20
worries a lot about going low and then not being well, maybe needing assistance. But also she worries a lot about alarms going off, like when she's in school. Oh,

Scott Benner 12:32
she doesn't want people to hear the it's not even I would imagine. She doesn't even care if they know she has diabetes. She just doesn't want the beeping to bother people. She doesn't, yeah,

Linda 12:39
she doesn't Yeah, she doesn't want the noise. She doesn't really love people knowing she has diabetes, so she doesn't tell everybody. She's not very open about it. She doesn't want the attention on her. It's like all social anxiety stuff. Are we

Unknown Speaker 12:52
doing anything for the anxiety?

Scott Benner 12:54
Yes. What do we do? Working for she's in therapy. It has been for a while. Does it help? Not as much as we'd like it to. Is it more like the anxiety doesn't get better, but her like coping skills for having anxiety are getting better?

Linda 13:11
Yes, slowly, she's doing better. So she's told a few more friends about having diabetes, okay, which then helps, because she doesn't have to worry about them finding out.

Scott Benner 13:23
Ah, gotcha. So you keep it from them. And then there's anxiety about, I'm keeping a secret. Somebody's gonna find out my secret. Yeah, no, I didn't know that's interesting. I didn't think of it that way. But as far as it just like trying to give people like, like expectations, like, you don't go to therapy and somebody talks to you for a while and you're just like, oh, I don't have anxiety anymore. This is awesome.

Unknown Speaker 13:47
Not like that, right? Yeah, no.

Linda 13:50
Wish it was that simple, yeah.

Scott Benner 13:52
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Linda 16:28
Yes, I definitely do think that's a possibility, and it's something that we've talked a lot about and more. I mean, just you know how diet can have a big impact, yeah, on your mental health. So yes, I do think that there's very possibly a connection.

Scott Benner 16:46
I keep wondering if we're gonna because of glps being used, if people's inflammation is gonna get lowered and you're gonna start hearing like, side you know, like side effects, like, oh, I used to be much more anxious than I am now, or something like that. Like, I keep, I keep thinking like, maybe that's the thing we're gonna hear in coming years because of the population. I mean, it took me some time to interview enough people to think out loud like, Wow, a lot of these people talk about anxiety, like a lot of them, you know, like, I really think that if I had a podcast that where we were just talking about, I don't know, painting color choices for your interior but I really am talking around words interior design. Like, that's it. It's interesting. My brain's doing that today. If I had an interior design podcast, and for some reason, asked everybody if they were anxious, I don't think as many people would have answered in the affirmative as when I'm talking to a bunch of people who are somehow related to or have type one diabetes, like, I don't know, like it just like. So anyway, thinking that that population may have a greater propensity for whatever reason, the more things that they do that, you know, we can kind of look back at and go, Hey, like a lot of type one started using glps in the 2023 2425 like, and hopefully they'll go to maybe a daily pill sooner than later that's as effective as the the weekly injections are. Like, maybe we'll start hearing back from people like, hey, you know, I used to have this going on and doesn't seem as bad anymore, or whatever. I don't know, but that would be fantastic. Yeah, right. Like, I mean, I've had like, benefits from GLP that nobody like, when I took it, like, originally, they were like, Here, take this. It'll, you'll lose weight. I was like, Oh, cool. I definitely needed to lose weight, so that'll be great. And then all of a sudden I was like, wow, my digestion is better, which, you know, makes my elimination better. And then that fixes a lot of, like, you know, a lot of problems that you have in your life. And then all of a sudden I was like, Oh, my God, I don't get like, low iron anymore. And like, you know, like, you start seeing like, these benefits, like piling up, or you see all the women online who are like, Oh, I've had PCOS my whole life. I couldn't get pregnant. All taken to GLP. I'm pregnant now, that kind of stuff. So, yeah, yeah, no, it's pretty it's pretty interesting. There is a great episode here where, I mean, and this is a stretch, I'm certainly not saying like, you should all start taking a GLP if you're bipolar. But there's an episode on here where the mom, a mom, comes on for and talks about a child who has type one and is bipolar, and they, you know, we're doing a lot for the bipolar disorder. And they, they made some really good progress with, you know, some understood therapies, but a lot of it still remained. And then the kids started taking the GLP and, like, she's, like, a lot of the problems she was having just disappeared. And I was like, that's crazy. Like, and Dick kid was really having trouble. Like, they had to, if I'm not mistaken, they had to, like, somehow secure the second floor windows, because the girl would have ideas of just, like, jumping out the window, you know, like, so who knows? Like, I don't know anyway, it's pretty far away from your your story, but that's

Linda 19:44
right, I would love to see more research. I know they're doing some with type ones. It's very interesting the effects that might have on insulin resistance,

Scott Benner 19:52
and, oh, it definitely does that. Like, if you're a type one who has insulin resistance, I think a GLP helps you immeasurably. Arden. And have been in a situation where, for like, her needle fears, like she hadn't taken her GLP in a while, so we adjusted her insulin out, you know, to manage things. But still, like spikes at meals, much more, you know, with the same amount of food, same kind of food, much worse, spikes, harder to bring back down a 1c, starts to rise. Also, you don't realize that when you know she started using the GLP, like, pre bolusing became less and less important. And so then you suddenly aren't using it anymore. But you don't remember, like, oh yeah, I should Bolus 20 minutes before I eat this, because on the GLP, you kind of didn't have to all of a sudden. And and, like, all these little things together. And then she went back on it Friday this week. So one, two, like, four days ago, okay? And I gave her not even a full dose, and today I had to adjust back her basal and her insulin sensitivity. So I had to take insulin. Yeah, so

Linda 21:01
yes, that's all very interesting. Yeah,

Scott Benner 21:02
no, it really is okay. So poor kid gets type one at what point? What happens next? Do you find out that the middle child has antibodies, or do you find out that the oldest child has Crohn's? Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the MiniMed 780 G system, the MiniMed 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to an 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

Linda 22:22
the antibodies came next. So after diagnosis, we got information about trial net, and I just kind of dove in, because everything that happened with her, we missed the diagnosis. I didn't want that to happen again. Okay? I thought, if somebody else is going to get it, I want to be prepared, right, and know that it's a possibility, yeah, and then be watching more closely. So it was probably she was diagnosed in August, and then probably in September. We did the trial net. We did the finger stick, which is not as easy to do as you think it

Scott Benner 22:55
should be, the at home thing. Yeah, yeah. I've heard people tell stories. So

Linda 23:00
we did the finger stick, and the my oldest came back completely negative, and then the middle was get 65 positive. So they think how long they don't really know. So she came back positive. Then we had to go do the blood draw so they could test for more antibodies. And she was still just get 65 positive at that point. So this is 2021 she was tested annually after that, and last year she came back with a second antibody.

Scott Benner 23:30
Okay, so 2021, till 2024 just one and now a second now, yes. So one antibody, what do they tell you the likelihood of type one is like, how do they percentage wise, talk to you about it? They said it's

Linda 23:47
20% chance. Well, the way they phrase it to me is, she's 80% not likely to develop type one.

Scott Benner 23:53
Oh, what a nice way to say that is she now 60% unlikely to develop type one.

Linda 23:59
Yeah, they've not given me another percentage. But

Scott Benner 24:01
now they're like, oh, maybe you should start saving your extra supplies now, right? Does two indicate that it's probably coming? Yes, yes,

Linda 24:11
and her second one is the insulin antibody.

Unknown Speaker 24:14
Oh, I

Scott Benner 24:15
see, yeah. So the ones that that you're indicate for, they mean a little more than just, like, you have one or two or something like that, right? Yeah, right. So what do you do? Does she on, like, a like, do you put her on a CGM, or do you just test your blood sugar once in a while? How do you

Linda 24:32
handle it currently? So through trial net, she's doing our oral glucose tolerance testing every six months. So she's had that done twice. She actually goes again next week. They re check her antibodies every time as well. So she spends stable her a 1c was 5.4 both times.

Scott Benner 24:51
That's still higher, though, than what you would expect, right?

Linda 24:55
It is, yeah, higher than it probably should be. There was no increase in. It between the two six in the six month time period.

Scott Benner 25:03
Gotcha, and that's positive, yes, like a pot, yeah? Not positive. Like, positive anybody, yeah, it's good thing, right? Well, I have two questions, really. My first one's about you, if you're already an anxious person, your anxiety probably led you to trial net, and then you found out she had an antibody. So then you your anxiety was rewarded for being anxious. Do you see what I'm saying? Like, it was that kind of bad for you, that that went that way. Because now, do you have that underlying feeling of, like, see, it's not anxiety. I'm right.

Linda 25:32
No, not really, okay. Like, when we got the first one back, I guess maybe I was a little bit more anxious then, but then the second one, I was just sad. Okay, yeah, they I cried when I got the phone call,

Scott Benner 25:45
because, you know what it means now,

Unknown Speaker 25:47
yeah, yeah.

Linda 25:48
Because now it went from, Hey, she's 80% not likely to get it to Yeah, you're probably going down this path. We just don't know when.

Scott Benner 25:57
And you know what Diabetes means too, yeah. Like, if it was just, if it was the first time, you might be like, Okay, you still don't exactly know. Can I ask you when you think of that? When you think of like, my daughter is going to get diabetes at some point, probably, what does that mean to you? Like, what do you think is going to happen to her? Like, big picture is it, are you worried about her feelings about her health, about her like, you know what I mean, like, what pops to mind when your mom worry jumps in

Linda 26:26
there. Yes. I mean, I worry about her being anxious about it. She's really not an anxious person. So she's handled it pretty well. I mean, I think about now, okay, at some point this is going to happen. She's 20, right? So she's going to be a full adult and on her own, likely. So learning how to manage without me there to help will be different, yeah? And want to be able that I can still support her through that,

Scott Benner 26:53
yeah, yeah. Plus they're like, you know, you know, when you're that age, not like, really an adult, you're just like, an adult on paper, yeah? And then the very first adulty thing she's gonna have to do is, you're worried, is, like, learn how to take care of diabetes, right? Which you now know what that means. And I'm assuming you didn't find it all that easy.

Linda 27:15
No, it's not. And it's just she'll be able to learn it and do it. I don't have any doubt about that, but it's, it's exhausting, yeah, so, you know, I don't want her to have to have that in her life. But if that's what it is, that's what it is. I mean, part of doing this, my goal in doing this, is now, like trial, not, not just does the monitoring, but when you hit a certain point, like when you start to be disc glycemic, they have other studies that are going on in prevention. So how long can we delay it now that we know that it's there?

Scott Benner 27:49
Okay, all right, so you're gonna like, and your daughter's up for that? Yep. Okay. Are you talking about tz old she and I

Linda 27:56
have talked about it a little bit. I have mixed feelings about it. What are your mixed feelings? Well, it's very expensive, I know, but that doesn't mean our insurance wouldn't cover it. Potentially it would. I know that it's a it's not an easy process to go through, right? It's intense, but again, if you can delay it, it's May worth probably worth it.

Scott Benner 28:18
I think what tz old is like 13 I'm guess. I think it's 13 treatments every day, like you get an infusion every day for 13 days or something, it might be 14 or something. Don't don't hold me to it. Often, you have to travel somewhere to get it accomplished right now, because there's, it can't be done everywhere. So I think I've interviewed a woman who, like, spent two weeks in a hotel with her kid, and they did it. Yeah, so for that effort, how much time do you want back? Like, if you got to decide how much you got back, you know what I mean, like, is it if they did that to her and it pushed her diabetes off nine months, would you be like, uh, what a waste of time. Like, the enemy. Like, what number makes it feel valuable to

Linda 28:55
you? I mean, I'd probably want five years, okay, at least.

Scott Benner 29:00
And that would make it feel like, okay, this was worth it, right? Gotcha, but they don't have any there's no data or promises that are made. Yeah, no, there's not Yeah. And you talked about that with your daughter, and she's like, it's cool. I'd be up for trying. I think she

Linda 29:15
would do it if that was the best option. And I don't know for sure what else triland is doing, but they did talk to us about that they do have ongoing trials or other stuff. Indiana University, okay, that are prevention based. So I would want to find out what those are and what the techniques are that they're doing, and try to decide side effects and all that stuff.

Scott Benner 29:37
Yeah. Okay, interesting. And when you guys sit and talk about, I mean, she obviously sees her sister with type one. She kind of has a vibe for it, like, has she come to you and expressed any feelings?

Linda 29:50
Her biggest concern is she has ADHD. So her biggest concern is just the managing the day. Daily regimen, right? Everything she needs to do in a day, and not forgetting, not getting distracted, so being able to manage the two things at once.

Scott Benner 30:09
Huh? She's ADHD, you didn't mention that. What else did you not mention?

Linda 30:14
Think that's it. Oh, my oldest is. ADHD,

Unknown Speaker 30:16
also, do you?

Scott Benner 30:19
No, okay, you just have the anxiety piece, yeah? Medication for you. I do not know. Have you thought that you should ever or No,

Linda 30:29
many, many years ago, I did some antidepressants for a while that were effective, but I didn't want to be on it forever. Yeah? So

Scott Benner 30:38
how effective? Like, what did they do for you?

Linda 30:41
Well, I was, I mean, at that time period, I was having more depression issues, so it was more like you're in a fog, right? So the antidepressant just helped, kind of, I feel like it woke me up so that I could do what I needed to do to get through

Scott Benner 30:59
that time period. How long did you take it for? I think about a year and a half, pre or post, kids, pre, kids, pre kids. Were you married then,

Linda 31:10
no, I actually met my husband during all of

Unknown Speaker 31:14
that. Oh,

Scott Benner 31:16
you met him during while you were taking the medication. Yeah, I gotcha, yeah. Have you felt like that again? Have you felt that fog again since then?

Linda 31:24
Yeah, I mean, I go through some time periods where I'm a little bit more depressed than others. I manage. I'm okay, yeah.

Scott Benner 31:32
How do you manage crack Okay,

Linda 31:35
no, what do you do? Oh, no, just, I mean, a lot of it, honestly, it's just, I just keep going. I'm busy. But, I mean, I love to read. That's something I do that helps me lots of prayer. So

Scott Benner 31:48
seriously, distract yourself. Kind of turn towards, turn towards religion, that kind of thing. Yeah, okay, all right, any of the kids have that

Linda 31:56
now they're all more on the well, they're more on the anxious

Scott Benner 32:00
side thing, more on the anxious, like, you know, when you said, when you said, more on the I thought, like, for a second, I thought you said, I thought you said, no, they're morons. And I was like, what? I was like, This is so inappropriate, I swear, for like a split second I was like, what does this lady do? She seems so reasonable, and now she's just gonna make a dumb joke in the middle of a depression conversation. But no, that's not what you were doing. So they're just more anxious. Is your husband? Is your husband anxious? Oh, no, not at all, not at all. He's just standing off this light going, like, I don't know what's happening. I'm just trying to live.

Linda 32:30
Yeah, exactly.

Scott Benner 32:32
Okay. I want to hear about the Crohn's. Like, when do you figure that out? Is that more recent

Linda 32:38
she was diagnosed a year ago, like, June 2024, what's living like that? Like,

Scott Benner 32:46
horrible, yeah, what is, what is some of the markers of it?

Linda 32:50
So for her again, really, I think we can go back a few years, though, because when she graduated high school, started college, she started having pretty significant anemia. Okay? I think that that was really the start of the Crohn's, because that's one of the hallmarks I see. And then it's like early 2024 she started having diarrhea and stomach problems. She lost like 20 pounds over two months, because you don't absorb nutrients correctly with Crohn's, that's one of the problems, right? Can't hold her vitamin D was low, like she was just had all kinds of stuff going on, right?

Scott Benner 33:27
Not absorbing anything, so not getting in her iron, not getting in her vitamins, yep, and losing a bunch of weight, not being able to hold weight even, did she have weight to lose? I'm sorry to ask like that. No, she did not. Okay, so, so off of a, what we would call, like a healthy frame. She lost 20 pounds off of that. Yeah, yeah. What did you notice first? Because I don't imagine, like a kid that ages comes to you right away, and it's like, I'm having diarrhea, like, or maybe they do, I don't

Linda 33:52
know. I know she's she's pretty open with all that stuff with me. So I knew pretty early on. And she was at college as well, which was, which is close to our host. She lived at college, but it was only like 25 minutes away.

Scott Benner 34:06
Did she remark about being extra anxious, nervous, upset about being at school. No, no, no. She didn't have trouble with that. No, she did not okay, okay,

Linda 34:20
but she did go through her college significantly downsized in the last year. It's like she was starting to have her symptoms in February 2024, they made this big announcement that they were basically cutting almost every program, and then she went into what we consider was probably her first flare, because stress can do that as well.

Scott Benner 34:39
Yeah, the stress hitter, yep, the college just was like, hey, guess what? Yeah, I know some of you are here for accounting, but too bad is that? Like, what happened? Yeah, essentially, wow, yes, I once knew a group of boys who played baseball at a school, and the school just announced they weren't gonna baseball anymore.

Linda 34:58
Well, that's essentially what they'd. It's a it's a school, a university, that has two campuses having some financial difficulty. They chose to to basically eliminate almost every program in all athletics at the campus she was on. Oh

Scott Benner 35:14
gosh, yeah, did she play a sport too?

Linda 35:17
No, but she was in marching band. She's a music person, right?

Scott Benner 35:22
And they cut that as well, yeah, well,

Linda 35:25
they cut everything. So this was, like, this last year. She ended up being able to graduate in May, but not with the degree she wanted. Was, like their last year, and then going into this next year, they moved everything. They had a small campus close by as well, where they're doing health professions, but that's open and nothing else. They

Scott Benner 35:45
went from a university to basically like a skill school for one thing, yep, awesome. You want to bad mouth them. Maybe, would you like to say the name of it? No, that's okay, okay, all right. Well, that's very kind of you. If I ever get Arden back on here and I ask her what she thought of the college she went to first, I'm sure she's gonna say some things that are gonna be terrible. So very nicely to hold it to yourself, very upsetting. They don't do it for free, I guess after they screw over your life's work and plans nothing like that, right? It all still costs the same amount of money, yeah, which still cost money. Was she too far along to transfer to go somewhere else? She was

Linda 36:25
in a music education program and was trying to she really had two more years to go, so she was trying to stay there as long as she could, get as many classes as she could, but they kept canceling classes. Okay? So she ended up graduating with a bachelor's in music.

Scott Benner 36:41
I thought you're gonna say she's an actuary, but God no,

Linda 36:45
and now she's going to go back to a different school to do post bachelor's teacher certification. Oh, you get to pay more money. Actually, the state will help pay for this

Scott Benner 36:55
one awesome, because they know you got screwed. Well, they need teachers. Oh, oh, I see, I see. Well, that's nice, but wow, that sucks. Geez, life's already hard enough you're pooping your pants, and this happens on top of it, like, awesome, by the way, is how it would have occurred to me. I'm sure she went to you at one point and said, is anything ever going to go right for me? Right?

Linda 37:17
Yeah. I mean, she definitely had those feelings, yeah. So she's going through all this, it took us. It took us a few months, couple months to really figure out what was going on. We actually looked at type one again. She still had no antibodies. But her, I actually, I put a CGM on her when she started going through all of this, and she was having high blood sugars. But we have learned that Crohn's can impact that as well.

Scott Benner 37:43
Before you knew it was Crohn's, you panicked a little bit about the diabetes, by the way, with good reason, and she had high blood sugars. You must have been distraught when you saw those high blood sugars.

Linda 37:52
Yeah, well, I figured this was it. Yeah, she was, she was going up to like, 200 after some meals, and I also going lower. Like, she was kind of all over the place, unreal. Her primary did a oral glucose tolerance test, which wasn't done correctly, in my mind, but because they did a they did a fasting and then they did a two hour they didn't do anything in between.

Scott Benner 38:15
Okay, so you didn't, did you say anything while it was happening? You're like, Hey, I don't think you're doing this

Linda 38:20
right. Well, I asked what they were going to do, and the lab tech just said, we can only do what the doctor ordered.

Scott Benner 38:25
Are you starting to wonder if anything's ever going to

Linda 38:29
go right, or if people can do it correctly?

Scott Benner 38:32
Yeah, that isn't going to happen. Yeah.

Linda 38:35
So we did see an endo who her primary did re check antibodies for us. So we saw an endo who did say, no, this doesn't look like diabetes. Check some other stuff, like her cortisol. And she had so many tests in that time period, check for celiac, and ended up at gi who actually figured out was Crohn's, because she had multiple she had multiple ER visits from the pain that she was in, yeah, and they did CT scans that found the inflammation.

Scott Benner 39:08
And then what's day to day management look like for that, she

Linda 39:11
drinks MiraLAX every night, just to help make sure she stays regular, because you can have either constipation or diarrhea. She's on like Pepcid. She takes supplements, like she's got her vitamin, vitamin D. We, I think we figured out an iron regime that is helping, but it's not perfect. That's been a very tricky one. She is on a biologic which one so she has she's on interview, okay? And so that's an every eight week infusion, and that has helped

Scott Benner 39:43
tremendously. Yeah, you've noticed a bump in her health from that. Yeah, definitely. What do you think it's doing for

Linda 39:49
it's decreasing all the inflammation. Okay,

Scott Benner 39:53
have you tried getting her an iron infusion instead of the iron tablets?

Linda 39:56
We've talked about a little bit what we're doing right, or what she's doing right? Now she does the pill every other day, and she's doing a liquid then on the off days, because the liquid does absorb better for her. Yeah, that helps. But her ferritin still a little

Scott Benner 40:12
low. How low would you tell me if you knew? Oh, she just had it done. It wasn't it was like 12, yeah, that's really low. Is she tired all the time? Yeah, yes. I'm telling you, try, try the infusion. You take a 12 ferritin to a doctor and say, hey, look, we'd love to, you know, here's her low iron symptoms, lay them out and say, like, you know, I'd love for you to write her a prescription for the an iron infusion. Try it one time, because I've gone through them a number of times, and they are restorative, and maybe once it was up higher, maybe the system you're on would help her stay up. Yeah, because I don't know how to grow from a 12. And if you haven't heard, I think it's in a thyroid episode with Dr Benito. She very strongly believes that a woman of menstruating age, the minimum your ferritin should be is 70.

Linda 41:07
Yeah. Pediatrician had told us once, when she was dealing with anxiety stuff and her anemia and she was anemic, that we should shoot for 75 per ferritin. Yeah, getting other doctors to buy into that has been tough. Just

Scott Benner 41:24
tell them to shoot you. Say, it looks like, you know, like this. You go, you go into, you say, Listen, shut the up. And just do it. Like, what do you

Linda 41:31
care? This is what I want. Yes, like, what do you care?

Scott Benner 41:35
Just try it and see. You know what I mean, because there's a whole generation of women walking around with their ferritin too low, and nobody takes it seriously, and it's terrible. And not just for your daughter because they're Crohn's, but like people who have heavy menstrual cycles all kinds of different things. There's a lot of tired ladies out there who could be helped, and a lot of physicians who just go like, Oh, you look like you're good, you're in range. I got 12 Barton's insane. I almost passed out when my farton was 12, yeah, yeah. I don't know how she's dealing. Is she what they call snippy? No, not usually, not usually, because that's what happened to me. Oh, my fart and got too low. I turn in a little bitch. Like, I complain. I would just, like, I'd be terrible about things. I think you bring my fart and back up, it just completely went away. Now. I'm just the regular level of terrible No, but seriously, like, that's one of the ways it affected me. Also, I'd get lightheaded, cloudy, I'd be exhausted by one, two o'clock in the afternoon, I couldn't get rested. Like she's having those things, I'm telling you, you hit her with one of those infusions, and then her body gets one chance to remake. Because, you know your body remakes blood cells all the time, right? So the next time her body builds new blood cells and is building it with enough iron, ferritin, etc, in her system, everything is going to come with that infusion, those red blood cells are going to carry oxygen better and boom, she's going to just feel better. It's crazy. She'll feel great. Yeah, yeah, do it. Trust me. Make somebody Yes. I will

Linda 43:01
talk to her and have her reach out to her.

Scott Benner 43:05
She's 22 she'll never do it, I know,

Linda 43:07
but she has to do all the interaction. She's done, she's actually done great. She's learned a lot over the last year with dealing with the medical system. Nice, good. I'm glad. Yeah. I mean, it's obvious talking to doctors, yeah,

Scott Benner 43:16
yeah, I actually have to call a doctor for Arden when you and I get done, because Arden doesn't have a voice. She just had her tonsils out. Okay, tomorrow's a week ago, and you think, oh, tonsils. That doesn't sound bad as an adult, not a fun thing. So, yeah, I've heard it's bad. Yeah, there's a referred pain that gives you, like, terrible ear pain, on top of the fact that the where they slice the tonsils off, like they can't stitch it up, or anything like that. So it just heals over. Then eventually you have scabs in the back, and then they have to get it's just, it's been six days so far, and Arden, who is really good with pain, like just, I think having autoimmune issues makes you maybe a little more accustomed to not being comfortable sometimes, right? You know, joints and things like that sometimes. And she's like, every four and a half hours, she's like, it's almost time for my pill again. Like, if I wait too long, it's gonna be terrible. And then the the refer to your pain gets she said it feels like she's like, you ever like, put a Q tip in your and it goes in too far and like, feels like it pokes the back, and that's sharp pain. I was like, yeah, she goes, it's just like that all the time. I was like, oh geez, It's so terrible, like, so Nevertheless, I have to call and, you know, her doctor for something. But she she tried to speak yesterday for the first time on like the fifth day, and she said she wrote down. She's like, that was not a good idea. That hurt really badly. I'm not doing that again. So anyway, she hasn't spoken in a week. That would be very hard to do. Yeah, you I would be tough for me. Although they've been doing a lot of different things, I get a lot of texts with long descriptions. We have a white a portable whiteboard. She's writing stuff on constantly. Last night, her girlfriend found like, a translation tool or something. It speaks it out loud. So there was just a robot voice in the house last night saying stupid things for a while, a lot of stuff was going on. Do people call friends? Who are girls girlfriends still? Or is that a thing? I remember my mom saying, My girlfriends, you call your friends girlfriends? The girls?

Linda 45:16
I don't and I don't think my daughters do that, yeah, but it is something that when I was young, people say, my grandma would say, I'm going

Scott Benner 45:25
to stop saying that. Then her friends, anyway, her dumb friends were over yesterday, then they were doing that. Okay, so we have it laid out here. We understand the lay of the land for all three kids. So I want to spend the rest of the time talking about how you are. I don't know it managings Maybe the wrong word, but like, How are you, I guess, managing the right word. How are you managing the unknown part of your middle daughter's half diagnosis is your younger daughter feeling any certain way about her sister getting type one at some point, how do you manage, in general, with all these health issues going, like, Do you have a job? Yes, I do. Oh, my God, you shouldn't have to have a job.

Linda 46:11
Yeah, there are days I've had that thought,

Scott Benner 46:13
yeah, there should be some sort of societal agreement where, like, your three, your three girls, have three different autoimmune issues, and you're like, Yeah, you know what? You don't have to work anymore. Like, how do you manage this whole like, can I just say cluster? How do you imagine

Linda 46:27
it's just a lot they're they're old enough that they do a lot of it. So for me, it's a lot of well, like, support and listening and helping them to figure out. Like, when my oldest is dealing with Doctor stuff, I go with her to most of it, and I've told her, I'll do that forever. I don't care. I mean, I know she can handle it, but I'm here to support you, yeah, just looking at test results with her and helping her then to figure out I should talk to my doctor about this, you know, giving her that kind of guidance so that she can be independent. My daughter with type one. I'm still decently hands on. She does everything on her own, but I do help with carb counts. I help her when she's high, trying to get her back down in range and get up in the middle of night and give her juice. I don't know. I guess I just do it a lot of texting so that when I'm not there, like if I'm at work, I actually changed. I didn't leave employers, but I changed my job a year and a half ago, and part of my reason for wanting to is so that I had a little bit more access to my phone, because I work in a school and I was more in a classroom before. Now I'm the secretary, so I have more flexibility to respond when they need something.

Scott Benner 47:43
So you've adjusted your life a little bit. But moreover, you're just telling the kids, like, Look, I'll be there for you as long as you need. Like, but you're actually going through things, which I think is important. You're not just like, like, oh, the doctor said this, then you just wander off and don't like, you're actually considering what's going on and trying to teach them at the same time how to think about it. Yes, that's awesome. Where did you figure that out? Like, did you have, like, a good parent or something? Well, I

Linda 48:07
did have good parents. Yeah, I don't know. I mean, I just, I think it's just me. I mean, I knew that I'm gonna support them and, I mean, I didn't go through hell stuff like this when I was a

Scott Benner 48:17
kid. But, yeah, you'd have anything at all growing up,

Linda 48:21
I had asthma,

Scott Benner 48:22
asthma and, oh, and the anxiety, the anxiety when you were younger, as well,

Linda 48:27
not as bad. I mean, it's not like I'm bad. I don't want to use that word. It's

Scott Benner 48:31
there. It wasn't as intense as it is now, yeah, I gotcha. Do you have an idea of what age that came on? High school time period was probably the hardest. Do you remember anything happening, like traumatic or like,

Linda 48:47
I moved between my freshman and sophomore year and changed high schools, and that was not

Scott Benner 48:51
easy. Like, your family just moved. There was no like, your parents get divorced. My dad

Linda 48:55
was a principal at a school, a really, really small high school that closed, like right before school opened, they decided to close. So then he didn't have a job. We moved, we were in New Mexico. Then we moved to Ohio to live with my grandmother, and then so I suddenly had to go to a brand new school where I knew nobody. Okay, so that

Scott Benner 49:17
was tough. You found that tough? Yeah, yeah. I'm trying to decide if all of this would be helped a little if your husband was a little more involved. Like, do you ever wonder, like, hey, like, it's fun that we've been doing it like this, but there's a lot going on here, buddy, maybe you need to, like, jump in

Linda 49:33
sometimes I think that. And like, he's fine. Like, if I'm not here, he's gonna take care of people, right? Yeah, if I, if I go away like I, I go away with my friends once a year for a weekend, he's going to make sure that he wakes up if she needs a juice, you know? Yeah, he's, he's going to make sure that everything's safe and taken care of. So I do appreciate that. Yeah. I think he just kind of looks at and thinks that I figured it out, it's all under control.

Scott Benner 50:06
What about the long term worry about the kid with the two antibodies, or the the impacts of the Crohn's? Like, do you conversate with him about that?

Linda 50:14
We do? I mean, I think he worries more about our our daughter with the type one, just because, I mean, her management is okay, but it could be better, yeah? And she's young, so she's looking at the here and now, what helps me with what I need in the moment, whether it's anxiety wise or whatever the situation is, and not really thinking about what my life be like in 10 years. Yeah, you know, yeah.

Scott Benner 50:42
She's not worried about a higher blood sugar and what it means when she's 35 right? Yeah, right. And

Linda 50:49
she, she, she has gotten better, but, and then you go to the Endo, we were last actually, at the end of in February. Her a 1c was 6.90

Scott Benner 50:58
that's not, listen, that's pretty great, not horrible, right? I hear what you're saying.

Linda 51:02
It could be better, and then the endo just says, Oh, you're doing so great. That's

Scott Benner 51:07
all they say. They say that to everybody, by the way, yeah, you could have a 13.9 and they'd be like, you're doing great, and anywhere in between. I don't think I've given a pretend magic wand to anybody and asked a question in a while, but like Crohn's type one, the knowledge that type one is coming. Which would you take away? If you could only take one away from somebody? Ooh, that's tough, because I have my answer. My answer is never what your answer is, but I'm still I got mine. I'm ready.

Linda 51:35
So if I'm dealing with what we already have right now, I'd probably take away the one make sure my middle daughter doesn't get it, because she's preventable. Interesting, right? Yeah, the other two are already in it.

Scott Benner 51:48
I always, I always love people's answers. I would do Crohn's. It's tough. Crohn seems the toughest to me. Yeah, I mean having, I want to be clear, I don't have Crohn's or type one diabetes, and nobody's telling me, I'm about to get type one. So this is all from a very academic point of view. I No one's ever said the thing I'm thinking so far. But yeah, that Crohn seems like, it just

Linda 52:11
seems terrible. It is horrible. Yeah, ideally, as she continues the biologic, she can get remission and being like, feel pretty normal, right? Yeah. But I know, like my mother in law, when we got the diagnosis for Crohn's, said, oh, you know, I know it's bad, but I think it's far worse to have diabetes. And honestly, I kind of thought I don't know about that, because we know that we can manage diabetes. You can feel okay if you're taking care of yourself, right? Yeah, Crohn's is kind of like, oh, I should not have eaten that. And now I'm in a flare and I'm intense pain. Little things can happen,

Scott Benner 52:50
yeah, it could last a week or more, too, right? When it first Yeah, definitely, yeah. It's funny. I almost feel like a hypocrite, because I am very much a person who I don't see any value in comparing people's struggles, I mean, but I was just, I asked, because you're the mother of all three, and I thought, like, What is your perspective on this? I'm assuming that you would, you know, try to use the magic wand to make two more magic wands, and then I would help everybody make them all better. Exactly, exactly. There's two people who already know what it's like to live with this and they're getting through it. If you could make a wish, you'd make a wish that if you could only impact those three people in those three things, that they the one person

Unknown Speaker 53:31
didn't get it, yeah,

Linda 53:33
I'm sure that they would think that's not fair, the two that are already dealing with stuff, right? But

Scott Benner 53:38
yeah, no, I mean, I can make, I'm sure they can all make a compelling argument for themselves. Yeah, they could. Yeah, well, that's interesting. Oh gosh. Is there anything we haven't spoken about that we should have? I don't think so. We're doing okay, yeah, yeah. You comfortable? I am good, good, good, good. I had to figure out there's you have, like, a little pause before you answer. I stepped on you a couple of times earlier until I figured out your pause. Some people pause because they have nothing to say, and some people pause before they speak. This probably sounds pretty academic to people, but pretty obvious. I got confused with your pause twice where I thought you weren't gonna say anything, but then I realized you were collecting your thought. So I apologize if I did that earlier, but it's okay. Thank you. How do you find out about the podcast?

Linda 54:22
When we were in the hospital at diagnosis, I don't remember who a nurse, social worker, somebody said, oh, there's support groups on Facebook. So I googled, or I went in Facebook and searched, and yours came up, and so then I found the Facebook group, and then the podcast, and very early. So it was super, super

Unknown Speaker 54:41
helpful. You with the Facebook group first?

Linda 54:43
Yeah, I was in the Facebook group first found out about podcasts. I think I kind of just started at the beginning, okay, before I realized that there were different series, and, yeah, and it was four years ago, so

Scott Benner 54:54
everyone should start at the beginning. First of all, because Scotty needs to download, but, but yeah, I just didn't know. Like the people's pathway to it. So she didn't, the nurse didn't specifically say, Go find Juicebox. She said, Go find support. Yeah, you googled and founded Facebook, or you searched in Facebook. I

Linda 55:10
think I went on Facebook and searched type one parent support groups. So it helped, because very early on, then I became more comfortable with using insulin and understanding how it worked, and understood what the doctors were saying, and so it made a huge, huge

Scott Benner 55:27
difference. That's awesome. That's really great. And you actually made it from the Facebook group to the podcast, which is, by the way, the most difficult transfer. Hold on a second. My wife is overseas at work. Hey, Kelly. I'm recording the podcast. You can say hi to Linda real quick, and I'll call you back. Quick, and I'll call you back in two minutes. Okay, Hi, Linda. Hi. Linda said hi, but you can't hear because I have here headphones on, so I'll call you back in a minute. You want to check on art, and she feels nauseous and dizzy right now from the pain. I'm going to get down to her in a second. Bye, my wife has had to travel so much for business lately that as she left, I was dropping her off at the airport, and she's just looked at me like she was 10 years old. And she's like, I don't want to do this. Just want to be home. I was like, just get on that plane. We're almost done. 10 more years. Will retire. That's the first time it was ever heard Kelly's voice. It's interesting. Yeah. Oh, well, you're the first one. Linda, I'm sorry. The hardest translation to make is from Facebook reader to podcast listener. Okay, like, so it's hard. It's I used to think about like. I used to think I had like an ecosystem, which I do, but like the Facebook group and the podcast, but I used to think of them as like one thing. It took me a while to realize they are two completely separate entities and and that there are certain people who prefer audio and certain people who prefer reading. And right there's not as many crossover people who prefer both, who like both. So anyway, it's always interesting to me how people find their way to the to the audio.

Linda 57:05
I was not a podcast listener, yeah, so I think yours might have been the first podcast I ever really listened to. But yeah, it was good, and exactly what I needed, cool.

Scott Benner 57:15
That's awesome. I'm glad to hear it. Yeah, I appreciate you sharing this story too, and I want to just check one more time, because I took you all over the place. Did this go any way, the way you expected

Linda 57:24
it to? Or well, not entirely, but I got what I had in mind.

Scott Benner 57:29
Okay, if I put you in charge of this, I made you the producer, what would I have asked you about and stuck to,

Linda 57:34
I don't know. Oh, that's an interesting question. I got, like, I wanted to talk about the diagnosis and trial net. There's so much controversy about trial net that I see in the Facebook group that that was part of, I really just wanted to share our experience, because it's been a positive experience. What

Scott Benner 57:49
do you think the controversy is? What people just talking about? I don't want to know versus I want to know whether or not you should know or not. Well, I mean, you're an anxious person, and you know, is it valuable knowing?

Linda 58:00
Yes, I'm very thankful, because we can either find those prevention methods and delay, or when it's inevitable, we're going to be able to walk into it slowly. I

Scott Benner 58:12
have to tell you, that's how I think about it. And I think it's interesting that a person who finds themselves being anxious thinks the same way, because I would think that the again, I've said now, said academic like, five times, but the academic argument against that would be like, well, if I'm an anxious person, it gives me more to be anxious about. But I don't think that's true at all. Like, once your one kid's got type one, your other one's got a different issue that you know also seems inflammation related, right? Crohn's right. You gotta start looking at the third one thinking, like, oh, like, something's gonna happen. And then there's that anxiety, the never knowing, right?

Linda 58:46
Am I right? Yeah, no, yeah, I think I would worry anyway,

Scott Benner 58:49
yeah? So now every little thing, yeah, at least now you have good information. If you're going to be concerned about something, it's not and then it's not just mindless worry, it's actual thoughtful planning, right? Yeah, that's all so you would tell people do it? Yes, I definitely would. All right, there you go. I like, by the way, when I asked you, like, Did this go the way you expected? You said, No. I said, Well, how should have gone to you? And I don't know, reminds me of, Have I ever told you guys how I paid for my wife's engagement ring? I'm not sure. I don't think I have. So we got married without an engagement ring because we were poor, and actually my wedding band and her wedding band, I think we paid $50 for both of them in our friend's living room because their friend was a jeweler. I'm making air quotes. It's possible My rings are stolen. I'm not sure exactly, but I wanted to get my wife like a real ring, but we were married with just bands, and then by the time she was pregnant with Cole, we'd been married for four years, maybe, and we were nowhere near getting like, you know, like an engagement ring, right? And I we, you know, planned for me to just. Stop working, but I had this like enough of a skill from my job that I thought if I could just get two, maybe three freelance gigs after I'm done working, I could pocket all that money and buy her a ring with it, right, right? I ended up doing that. And by the way, at that point in my life, I was doing graphic design, not well for a credit union, okay? But, you know, I did. I picked up like three jobs, and I at one point thought, why? Maybe I'll just keep doing this on the side. Like, you know, it's a little extra. I did three jobs and I made, if I'm remembering correctly, I made $10,000 over those three jobs. Like, it was like, months of work, and, you know, it was fine, like, what? But what I noticed over and over again, because now I was doing designing for different people, not just like the guy I used to work for in the department I was in, you get hired based off of your samples. And people would say, Oh, I love what you do. I'd like you to do something for me. And then you'd give them a, you know, say, Here, here's my vision for this. They go, Oh, no, not that. And then I'd say, oh, okay, then what? Then? And they go, Oh, I don't know, but not that. And I remember sitting in a meeting once where I actually had to bring Cole in a carrier. Okay, so I want you to imagine I've got coal in a carrier. I'm designing this postcard for this, like bank or something like that. And I pull it out, it's exactly what they asked for. I am telling you, it is exactly what they asked for. And I put it down, and the woman goes, no, that's not right. And I said, it's exactly what you said. You said you wanted this here, this here, like this. You wanted this larger than that. This is exactly what you wanted. And they were like, yeah, no, that's not right. And I said, Well, what do you want? She goes, I don't know, but not that. And I remember in my mind thinking, you mother, and like, I was like, and it's when it hit me, like people don't know what they want. They just know what they don't want, right? Anyway, that's how it made me feel when you when you said, No, this did not go the way I expected. How should it have gone? I don't know. No, no. So anyway, I promised Linda I wasn't going to curse. And then that went right out the window. Do you curse at all? Linda? Would you like to curse at all? I'll bleep it out. I don't. No one would know if you did like I'll make sure it gets bleeped out completely. This is completely. This is your one chance to say something terrible out loud. No one will even hear it. No, that's okay. Oh, that's so lovely. You're lovely. Hold on one second for me, you were terrific. Thank you. Yeah.

I'd like to thank the blood glucose meter that my daughter carries, the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juicebox and don't forget, you may be paying more through your insurance right now for the meter you have then you would pay for the contour next gen in cash. There are links in the show notes of the audio app you're listening in right now, and links at Juicebox podcast.com to contour and all of the sponsors. Thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox the epic episode you just enjoyed was sponsored by the twist a ID system powered by tide pool. If you want a commercially available insulin pump with twist loop that offers unmatched personalization and precision for peace of mind, you want twist, twist.com/juicebox, I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast.

Hey kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy? The private Facebook group for the Juicebox podcast. I know you're thinking, uh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community. Juicebox podcast, type one diabetes on Facebook. Of course, if you have type two, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in, but make sure you're not a bot or an evildoer. Then you're on your way. You'll be part of the family. The podcast contains so many different series and collections of information that it can be difficult. Will define them in your traditional podcast app. Sometimes, that's why they're also collected at Juicebox podcast.com go up to the top. There's a menu right there. Click on series, defining diabetes. Bold beginnings, the Pro Tip series, small sips, Omnipod, five ask Scott and Jenny. Mental wellness, fat and protein, defining thyroid, after dark, diabetes variables, Grand Rounds, cold, wind, pregnancy, type two, diabetes, GLP, meds, the math behind diabetes, diabetes myths and so much more, you have to go check it out. It's all there and waiting for you, and it's absolutely free. Juicebox podcast.com, the episode you just heard was professionally edited by wrong way recording, wrong way recording.com.

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Melissa returns to share her 12-year-old daughter’s rare thyroid cancer diagnosis and treatment, layered on top of type 1 diabetes

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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
Here we are back together again, friends for another episode of The Juicebox podcast.

Melissa 0:15
Hello. I am Melissa, and I have a daughter who is now 12 and a half, and she was diagnosed with type one diabetes almost six years ago, six years in a couple weeks here, I'm returning to the podcast to talk about her recent thyroid cancer diagnosis and treatment.

Scott Benner 0:38
If this is your first time listening to the Juicebox podcast and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all. Look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management, go to Juicebox podcast.com, up in the menu and look for bold beginnings, the diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. 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,

I've got my morning routine down, and now I'm optimizing my nighttime routine with ag one. This episode of The Juicebox podcast is sponsored by ag one, Learn more at drink ag one.com/juicebox, later in the episode, I'm going to tell you about ag one and ag Z, Z, like sleep. You got it. Today's episode is sponsored by the tandem Moby system with control iq plus technology, if you are looking for the only system with auto Bolus, multiple wear options and full control from your personal iPhone you're looking for tandems, newest pump and algorithm. Use my link to support the podcast, tandem diabetes.com/juicebox, check it out. The episode you're about to enjoy was brought to you by Dexcom, the Dexcom g7 the same CGM that my daughter wears. You can learn more and get started today at my link, dexcom.com/juicebox,

Melissa 2:30
hello. I am Melissa, and I have a daughter who is now 12 and a half, and she was diagnosed with type one diabetes almost six years ago, six years in a couple weeks here, I'm returning to the podcast to talk about her recent thyroid cancer diagnosis and treatment.

Scott Benner 2:51
Wow. And you were on we're going to figure it out, because you just told me it was called danger noodle, and let's see if I can figure out what episode number that is. It

Melissa 3:01
was. I know it was in the eight hundreds, but I'm not exactly sure. Like maybe 868,

Unknown Speaker 3:08
ish, 879,

Scott Benner 3:11
maybe yes, danger noodle, 879 it says, Oh, okay. Melissa is a preschool teacher and the parent of a child with type one diabetes. How has your life changed since then?

Melissa 3:21
Oh, a lot, you know, just thinking. I was like, maybe it would be helpful, because at that time, you know, I I taught in the same school where my daughter went. So I was like, Hey, let's go on and talk about what it's like being employed in the same building when your daughter is type one and and now here I am with this cancer diagnosis that kind of took the wind out of all of our sales, but we're doing great now. So

Scott Benner 3:48
when did that, that new diagnosis come up back in like

Melissa 3:51
April ish of 2024 is when her endo started to notice thyroiditis. And you know, your favorite word, goiter.

Scott Benner 4:01
It's a funny word. I don't care what people say. So they noticed the goiter on your what your 10 year old? Well,

Melissa 4:08
yeah, but at that time, yeah, well, yeah, she was, yeah, 10 or 11, probably. And he just kind of always checked it and said, you know, we should probably do an ultrasound one of these times. And, you know, it was a few rounds of appointments before he was like, you know, let's go ahead and do this. So it was actually two days before Christmas. So December 23 of 2024 we went up and she had the ultrasound done, and then that's when they discovered a suspicious nodule. And then we went to California to visit friends on vacation. And that's the other thing that was odd, was she really had no other symptoms. You know, she didn't have a sore throat. I mean, she was not any more tired than a pre teen. Is, in my opinion, I have an older son as well, so I. Boys and girls are different, but just I really didn't notice any typical symptoms that I would have been looking for or noticing. Now that I know more about this thyroid cancer thing. Okay, so then we had a biopsy done, which after we came back from vacation, she had the biopsy done on January 30, that was the fine needle aspiration. It was tested and discovered that it was papillary malignant thyroid carcinoma.

Scott Benner 5:29
Now, prior to getting the diagnosis, when they're doing the testing, what's your like? Thought, what do you think they're gonna find?

Melissa 5:38
I honestly, I was not mentally prepared for it to be cancer, right? I thought, okay, maybe she might have to get on some sort of thyroid medication, if to help the swelling and things like that. And it's actually kind of a wild story of how I found out, because, of course, the results came back on a Friday, and it was the Friday before it was going to be her 12th birthday party. Oh, my God. So I went to pick up my son from basketball practice, and I'm sitting in the parking lot waiting for him at the high school, and I opened my my health, or whatever it's called, my chart, and I said, Oh, the results for her, her fine needle aspiration, are back, and I'm reading, and I saw those words, and just like cold went through my whole body, and I'm like, Oh my gosh. And I was read it over and over and over. And then my son gets in the car, and I'm trying to hold it together, being like, okay, he can't know something's going on, which he just gets on his phone, so it's fine.

Scott Benner 6:44
Luckily, he didn't look at me, so it wasn't a problem.

Melissa 6:48
And so I drove home, and my husband had he had fallen asleep on the couch downstairs, and I went and woke him up, and he was not the happiest that I woke him up from his appetizer. And so I brought him upstairs, and I showed him my phone, and I just it's one of those, like, negative core memories for me on this ride, because I just whispered, and I said, it's cancer. And, you know, he had his moment to process, and we just both looked at each other, were like, we can't tell her yet, because it's like, I'm not going to ruin this 12 year old's birthday and have her and her four best friends, you know, yeah, like, have just this negative cloud over them for this day. So it's like, I said that was Friday and then, and then we had Saturday morning, she had basketball games, and so I'm sitting there next to the grandparents, and I can't tell them, because we didn't want to tell them before she went understood. So that was a rough weekend, and here I am trying to make this birthday party the best. And drove the girls all around our city and the city next to us. We're really close, like I live in northern Wisconsin, you could probably tell you know

Scott Benner 8:05
I was gonna say Saskatchewan with your accent, but I gotcha, it's just fine. Ouch. I got you, yeah,

Melissa 8:12
but we live really close enough to Duluth, Minnesota, which is right over the bridge. So we went to crumble cookie and Starbucks, and we went to Ulta and Sephora and all of the the awesome places all this time me driving around and knowing this big bombshell that I'm gonna have to drop on our family. So then we had to wait. It was a sleepover. So then I had to wait, then until all the girls got picked up on Sunday before we sat her down to tell her the news.

Scott Benner 8:46
Can you tell me how you did it without crying? Probably not,

Melissa 8:50
but no, my husband and I just sat her in between, and, you know, we said, you know how you had the the needle in your neck to test it out and all that. And I said, I said it is a form of cancer, you know, because when a kid hears cancer, what they know about cancer is, like, you know, the big stuff. And not that this wasn't big, but everyone always says, like, Oh, if you're gonna get cancer, this one's the best one. And I'm like, Oh, thanks. That's super helpful. She just looked at us and she has, like, beautiful, thick, long, gorgeous hair. And that's was her first question. She said, Am I going to lose my hair? And I said, No, honey. I'm like, No, this is, you know, I have a lot to learn about this, but you're not going to lose your hair. You don't have to do the chemo or the radiation or anything like that, as far as we know at this time, so she kind of processed, and she cried a little bit, and she went into her room, and then we brought our son up to tell him, and he just like when we told him, we could just see his chest, just like dropped, you know, like a big, okay, here's something else. And he looked at us, and I said, She's in her room, if you want. Go give her a hug, and I let them have their moment. But I guess he went in there and looked at her and said, Why does everything always happen to you? Oh, he's very He's very sweet. How old is he? He's 15.

Scott Benner 10:10
Oh, do you think that was meant to be comforting? Like, hey, yeah, you're getting screwed, right?

Melissa 10:17
Exactly? Yeah, that's exactly. Because that's the kind of kid he is. He's so sweet, he's amazing. They both are then. But honestly, sometimes we joke with him that he's like, if he was the one that had type one, he would whine and complain a lot more than she does. She just she's our little gypsy that takes it everything with a grain of salt and is a ray of sunshine and positivity for the most part. So

Scott Benner 10:40
I don't know it's funny. I always wonder how I would be, you know what I mean? I don't know if I'll ever know or not like, what it'll be like to have type one. I don't have it. I don't know if I'll ever get it, but I always do wonder about what I would be like, how I would be if it happened to me. Yeah, I don't want it to happen. I'm not saying that. I'm just saying like, if it does, I have no idea which way I'm gonna go

Melissa 11:03
seeing I just think that with everything that you already know about it, and everything that you've been through when you're battling this day in and day out, for me, like cancer, the cancer diagnosis, everybody, like, I almost felt Like, should I be reacting more to this? Like even my husband, after everything kind of settled down, he looked at me and he said, You know, I really thought you were gonna break down at some point, and you didn't. And I'm not, like, it's not something I'm bragging about by any means. But it was just like, Okay, here we go. Here's something else that we have to deal with. Because I'm just so used to the doctor's visits and the constant of the diabetes that it's like, okay, well, here's another thing,

Scott Benner 11:48
yeah, also the diabetes is, I hate the word, but like, makes the point, like, it's manageable, right? So, like, you're so the thing that you've been thrust into previously was it didn't end somebody's life. And you're like, Oh, we could figure out how to handle it, and maybe and maybe you're thinking along those lines, like talking about it that way, like, could it have gone differently than it did? Could what she was diagnosed with? Could it have killed her? Or, I don't know, I'm asking.

Melissa 12:12
No, we caught it early. It's super rare in kids. Like, honestly, I even tried to google it, and it was, like, one in 300 million for a type one diabetic to get thyroid cancer. Like, it was like, oh, sweet, sweet, yeah. But because, I mean, I'm fully aware that, like, let's say she didn't have type one, I'm thinking it could have been worse, because we would have never been looking for it, but it's, it's similar. I look at it through the lens, similar to, we're not quite sure how she got the type one. We have guesses. But does that really matter? So same with the cancer. Is like, I don't know if the type one and the cancer are connected. When I Google that, it says something along the lines of, there could be a correlation, but there's not enough scientific evidence to either prove it or negate it. What I try to do, to explain to people is, and I'm no expert, obviously, but I think maybe the swelling of her thyroid caused just some cells to rapidly develop in the wrong way, and that's what developed the nodule that was cancerous. And she did, actually after her surgery, they took lymph nodes as well, and three of the 25 lymph nodes that he removed in surgery were also cancerous. So if it would have been longer in between, or we wouldn't have known, or anything like that, then it could have been worse. But it has, like a 98%

Scott Benner 13:52
survival rate, even when it's in the lymph node system.

Melissa 13:55
Yeah, that's, I mean, it's case by case dependent. But yeah, so we got lucky, and we caught it in time. And all I would say is just have your endo check your thyroid, like, you know, it's, it's that simple test that they do, and they feel it on both sides, and have you swallow and look up, and, you know, a professional would be able to understand if it was swollen and whatnot. And it's a, it's a simple ultrasound,

Scott Benner 14:23
yeah, do it for sure. Don't skip that stuff. Wow. So what's the process like? So you said it was a nodule. The nodule gets removed. Do they take part of the thyroid? Like, does she have? Like, does she have take thyroid beds? Now what? Like, walk me through the whole thing. The Dexcom g7 is sponsoring this episode of The Juicebox podcast, and it features a lightning fast 30 minute warm up time that's right from the time you put on the Dexcom g7 till the time you're getting readings. 30 minutes. That's pretty great. It also has a 12 hour grace period so you can swap your sensor when it's con. Being for you, all that, on top of it, being small, accurate, incredibly wearable and light, these things, in my opinion, make the Dexcom g7 a no brainer. The Dexcom g7 comes with way more than just this, up to 10 people can follow you. You can use it with type one, type two, or gestational diabetes. It's covered by all sorts of insurances and, uh, this might be the best part. It might be the best part alerts and alarms that are customizable, so that you can be alerted at the levels that make sense to you. Dexcom.com/juicebox, links in the show notes, links at Juicebox podcast.com, to Dexcom and all the sponsors. When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful. This episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pump and algorithm, the tandem mobi system with control iq plus technology features auto Bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandem diabetes.com/juicebox, this is going to help you to get started with tandem, smallest pump yet that's powered by its best algorithm ever, control iq plus technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead, and it adjusts insulin accordingly. You can wear the tandemobi in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately. Clip it discreetly to your clothing or slip it into your pocket head now to my link, tandem diabetes.com/juicebox, to check out your benefits and get started today.

Melissa 16:52
Yeah. So, oh, the other thing too, like her, TSH and everything that also was within range and nothing to be concerned about over the last years with every blood draw. And I know you always like to say, like, let's not look at the numbers, let's look at the symptoms. But like, I like I said before, like, she didn't have any other symptoms besides the swollen thyroid. So can

Scott Benner 17:13
I ask you, do you know what the TSH was prior to the diagnosis for the cancer?

Melissa 17:18
First? I do awesome. I have a I have a chart. Yeah, so like, all the way back to at diagnosis, her TSH was 1.14 and then it fluctuated a little bit. There was one time where it was point two, two, but that's the day she doesn't do well with blood draws. And she actually fainted that day. So I asked her and do I said, I said, Do you think that low, TSH, on that run? Do you think that has to do with the fact that she fainted? And he said, well, it very well could have, really, I don't know. I just listened to him every once in a while. Yeah, because, because, two months prior to that, she was 2.42 for her. TSH, right? And then, oh, we got a gap here. But about six months later, after that, point two, two, she was back to 2.63 so she was 2.63

Scott Benner 18:09
but and she had some symptoms. So her symptoms were that she was tired.

Melissa 18:13
So this is three months after he's just noticed the goiter. She was 2.63 okay. And then we go to July of 2024, and she was 2.15 and the day prior to her surgery, she was 1.6 for TSH,

Scott Benner 18:32
gotcha. It's, it's moving around a little bit,

Melissa 18:37
a little bit, yeah, but it wasn't like totally one way or the other off the

Scott Benner 18:40
charts. I hear what you're saying and then so, so once they do the surgery, the surgery now requires medication or no.

Melissa 18:49
We went down to Mayo. We're about three and a half hours from Rochester, so my husband, the day we found out, he's like, we're not messing around. We have a great medical system in our area. One of my close friends had just had thyroid cancer over a year prior, and she had her treatment in Duluth, and everything was fine, too, but my husband was just like, we have access. Let's go. So she had the surgery on March 11, and what he he kind of was telling us like he didn't know whether or not he was going to take only the half of the thyroid, because it's in the shape of a butterfly, if he was only going to take one half of it, the one that had the nodule, or if he would get in there and determine that he was just going to take the whole thing. He did end up taking the whole thing. She was put on 100 micrograms of levothyroxine. We had her first blood draw eight, like, I don't know if maybe six weeks later, four weeks later, it was April 21 and her TSH was up to 6.27 Yeah. So then our local endo made the decision to put her on non. Generic Synthroid, and 125 micrograms her TSH is point to one now, and that's where we want her, between point point one and point five is where we want her, because we can't look at the normal range of people, because she no longer has a thyroid. So it's a little bit different,

Scott Benner 20:21
and so they found the medication level to hold through there. You all know that I drink ag one every morning, so I'm excited to let you know about something new from ag one. It's called a G Z. A G Z helps to improve your sleep quality and supports the central nervous system. Not only does it help with your sleep quality optimization, but it will help you to fall asleep and wake up refreshed. This episode of The Juicebox podcast is sponsored by ag one, and if you're interested, check out ag one and ag Z with my link, drink ag one.com/juicebox, start taking your sleep seriously with ag Z head now to my link drink. Ag one.com/juicebox, to get a free welcome kit with the flavor of your choice that includes a 30 day supply of ag Z and a free frother. A frother, what is that like? A whisk drink? Ag one.com/juicebox, to find out what our frother is. And did you know that AG, one now comes in different flavors. It does foreign fact, original citrus Berry and tropical drink. Ag one.com/juicebox, links in the show notes. Links at Juicebox podcast.com. Yep.

Melissa 21:35
And now, at this point, we're, we're kind of done with mail crossing fingers. They're a fabulous facility. My husband and I kept joking that the people at Mayo were almost as nice as like the Disney cast members. If you've ever been to Disney,

Scott Benner 21:52
I just got back. Oh, really, it was at friends for life last week. I was at a Disney hotel all week. Yeah.

Melissa 22:01
So like how accommodating they are, and just like sugary sweet and the people that work at the Mayo Clinic in Rochester are very similar,

Scott Benner 22:09
yeah, actually, you're making such a good point, because the person who helped us with the problem, she was runner, and then her first name, they called her runner, like you'd be runner Melissa. I don't know what that job is. Obviously, they run around and do stuff. So we got there day one, and get up to our room, and the keys don't work. So we had to walk all the way back, and it was far like, and so we walked all the way back to the front desk, like, hey, our keys don't work. Like, oh, sorry. We'll reprogram. They reprogram. We walked back. They still didn't work. I was like, I was like, Oh, no. Like, it is. So I happened to see a maintenance person. I was like, Mike, you know, I explained. And he's like, Oh, hold on. He pulls me back and into, like, behind, you know, where they say cast members only. He pulled me into that door. And I was like, Oh, I'm gonna, like, see a magical place. It was not a magical place. It was like, a nope, no. And they found a guy. The guy comes up, he lets us in, and he says, yeah, there's nothing wrong with your lock. These are the key cards. The key cards are the problem. And I was like, Okay, I'm gonna have somebody come up, and then that's when the runner showed up. So she comes up, and my wife's like, you know, come in. You don't have to stand out in the heat, like, while you're waiting for the next person. She thought they were bringing new key cards. Then it got all messed up, and she ends up sitting in our room for like, 40 minutes for, like, talking, like, all the time. You just like, I have like, four hours today where I'm not working. I just want to, like, I want to go to the pool, and it's okay. We're standing we're chatting with the runner, and she's nice and everything. And we get done. Finally, it wasn't the key cards, it wasn't the lock. They had to move us to another room. They couldn't figure out why. They couldn't find the IT guy. It was a, it was a, what they call a rigmarole. And we get we get there, and she says, Well, this was you guys were so patient, and thank you and everything. And I was like, You're very welcome. And I looked at her, I was like, runner. I didn't call her just runner. I used her name. So this really was, like, this took like, an hour and a half, and she's like, Yeah. I said, I feel like, you know, those cups you can refill. It's like, Yeah, I'm like, I feel like two of those would really make this all just worthwhile, you know? And she laughed a little, and I said, I mean, my birthday is on Saturday, and, you know, this was I did want to be at the pool, and I've got to work most of the week. You've used up a lot of my pool time. Here, she brings us two cups, you know, sends them over, like, something which is really awesome. And then on my birthday, like, what did she say? She was, well, maybe I'll get you something for your birthday. Those cups are hard to get to. And I was like, feel like the cups are really the only thing they're going to make me feel whole. And we were joking, you know, like we were being, I mean, I was being very light hearted. And she's like, Are you sure? What would you like for your birthday? I was like, where are those Mickey Mouse ears, Rice Krispie treats? I could, I could do with one of those. But anyway, that showed up on my birthday. She was lovely. Oh, that's a cool story, it is. But I'm saying you're right, because most hotels would have been like, listen, you're in your room now. Go to hell, and they would allow.

Speaker 1 25:00
Exactly. You don't need no rice krispie treats. You're fine.

Scott Benner 25:04
Yeah, it's okay. Chunky, just, why don't you skip the rice krispie treat? You got go. You said you want to get to the pool. Why don't you get to the pool? That's what they would have said at a Holiday Inn. But no, it was. It was very nice. Everybody's always smiling and like every Okay, so you're saying Mayo Clinic. Very smiley, very it makes sense, though, right? Like, how scary of a time in your life is that, yeah, it

Melissa 25:25
was, it was scary. And, you know, looking around as we were walking through the facility, and, you know, seeing children, especially that we're far, far more ill than our daughter, you know, we just Yeah, it kind of put it into perspective. But obviously, you know, the employees there are trying to make it, as you know, the least poor experience that some of these families have to go through. So they're very, very wonderful.

Scott Benner 25:54
Did you meet people during the treatment that you know now,

Melissa 25:57
not really, because we, well, we ended up going down Sunday, March 9, we drove down, stayed overnight in the hotel, which was right across the street from where her surgery was going to take place. Then on the 10th, she had to do a blood draw, another ultrasound to get a more current picture for the surgeon. And then we met in person with the surgeon. We had met with him via zoom a few weeks prior to that to just kind of go over what our options were. And then we met with him in person with his team, and that's when he was kind of talking about what would happen when she was on the table, and me being the type a plus, type one, Mom, I'm like, okay, like, is her do? Can we keep her pump on? You know, like, I had all those types of questions too, and who's monitoring her, and are you going to do finger pokes when she's on the table? And, you know, is she going to have a dextro strip? Like I had all these questions as well, not just the cancer questions, yeah, and then everything. There wasn't anything in the blood work or the ultrasound that derailed the plan. So then she was able. We were the first one the next day to have surgery, and it was like I said right across the street. They were just like, you know, she's gonna be in for a while. Here, he told us about two hours, but it could it again depended on what he saw once he got in there. So like, the nurse was even, like, you know, just waiting here and pacing isn't going to be helpful. And they have a really cool system that, like, I would get text message that would say, like, the patient is being prepped and the patient is currently still in surgery, and, you know, and we were just waiting and waiting. So, like, we went for a couple walks and tried to get a bite of breakfast, and then we got a message that said, like, the surgeon is now beginning to close. And so we're like, okay, when we knew when we got that one, we were gonna start heading back. I mean, we were in walking distance, but, and then we headed back and had to sit in the family waiting room until they came to get us, to bring us

Scott Benner 28:09
to her. Nobody offered you a rice krispie treat at any point during that

Speaker 1 28:12
No, Scott, they didn't. It's, it's a gap,

Scott Benner 28:16
obviously, that's the system. Like, sounds awesome, actually, like the the room, like I was gonna say, reminder system. But what's telling you how it's going and giving you the process? It must be a little comforting. But I mean, what's the vibe like I'm most interested in, what did you and your husband talk about while she was in surgery? Well,

Melissa 28:33
you know, I spent weeks and weeks and weeks researching and options, and of course, I didn't always see the best things, but one thing that I was extremely concerned about was her vocal nerve. So the vocal nerve is so close to where the thyroid is that they have somebody during surgery that's consistently testing the nerve to make sure it's not damaged. And I mean, that was one of my concerns, is that she was going to come out and not have a voice anymore. She has a beautiful singing voice. And, you know, as much as I don't like hearing whatever mom, you know, I would definitely miss that as well. So that was my big thing. And my husband's amazing at always calming me down and validating my concerns, but yet, hey, you know, don't always think that the worst is going to happen and that kind of thing. So

Scott Benner 29:27
did you say we have two kids, and so far we have type one diabetes and thyroid cancer? What should I wonder is going to happen?

Melissa 29:34
That's what I say. And then he's like, Well, we have two kids, one with type one diabetes and thyroid cancer. We can, like, aren't we? Aren't we good for now? Like,

Scott Benner 29:43
I wish it worked that way. I don't think it does. I know. So that's the conversation. It's more like you, you chose the thing to worry about, not what's told to you by the doctors about the cancer. Like, is the idea, like, it's, I don't, I definitely don't want to minimize this, but is the con. Conversation from the doctors leading up to it, like, let's no big deal. We're either going to take out the nodule or we're going to take out the thyroid. She's going to take a replacement. There's not going to be any more cancer, and that's going to be it is like that, how they talk about it, or is it not that

Melissa 30:12
simple? Yeah, to the point that it was quite a bit of a wait, obviously, like January 30 is when we found out it was cancer, or shortly after, and then, like, think about March 11, is her surgery. My husband would say, like, what's the hold up here? And if that was the big thing is, like, they were kind of like, sure, you know, whenever we want to do this, we can do this. There was no urgency in regards to it. But my husband's, like, our daughter's walking around with cancer. Can we get this rolling here? So yeah, and there was even, like, her original surgery was scheduled for mid February, and it got bumped for a reason. And so I kept telling myself, this is not, like a huge priority, even though she's a child.

Scott Benner 30:55
So like, made it seem like it was less worrisome, exactly, yeah, because it wasn't like we have to get this done right now.

Melissa 31:03
Yes. And even our local Endo, he was like, this is an excellent prognosis. He rattled off a bunch of things that I now know a lot more about. And we can talk about the radioactive iodine therapy in a little bit if you wanted

Scott Benner 31:16
to. Yeah, I want to know what stand What did you learn more about during this process, the thyroid? Yeah. I mean, Tom, tell me what you would want people to know

Melissa 31:24
for sure. Like, make sure that you get everything checked out. You know, like part of me doesn't ever understand. Like, when you go to your well child check, like, why do they not do a finger poke, just like they would do a blood pressure check? That's one thing that I feel like they would catch some type ones earlier, before they go into DKA. So in like, along those same lines, you know, be adamant about them just doing a quick check on the thyroid. So that would be one thing to advocate for that, especially for a child like I said, it's really rare for kids to get the thyroid cancer, but it happened to us. So, you know, it can pretty happen to anybody.

Scott Benner 32:07
Yeah, no, I was gonna say that though, like you said, it was incredibly rare. And, I mean, that's gonna be your answer, why they don't do it,

Melissa 32:14
yeah, I suppose. But how hard is it to feel someone's neck for a second? So

Scott Benner 32:18
I have no idea, you know what I mean, like, I don't know. I don't think that's hard, but then, but if 20,000 other people who have had rare things are like, Hey, doctor, you know what else you should be doing? Are you squeezing my big toe when you come in? Because I I had an alien living in my toe, and it's very rare, but I can't, we just check it for everybody. Like, you know what I mean? Like, I don't

Speaker 1 32:37
know where you draw the line, I guess, my question, I guess, yes, an alien toe. You never

Scott Benner 32:41
know. I don't know, like, all the things that happened to people. I'm making up some of this stuff, just so, you know, yeah, I mean, I'm with you, and at the same time I'm if they told me, like, listen, we can't check for everything, I'd say, I understand that too. It's, it's just upsetting once it happens. How did she deal? Like, like, you know, you said you first told her, she cried a little bit. She went in her room, her brother, you know, helped her by telling her, wow, a lot of stuff happens too. What a bummer. But then, like, those months, then in between, like scheduling the surgery, the surgery actually happening. What do you think they were like? Psychologically for her,

Melissa 33:14
we had a ton of support from our family, friends and our community. Actually another like reason why I was like, should I be more terrified and scared and worried and upset about this and and I, yeah, sure, I had my own moments and things in private, but her best friend's mom is also her basketball coach. And for the championship game, like she they had shirts made, and it said, we play for Rees. Just so she just felt so much love and support from everybody. And, you know, messages from friends saying you're going to be okay, and we had people reach out from campuses that made her personalized cards and send them to her. So I feel she felt very supportive that just helped her kind of have the courage and energy to to know that everything was going to be

Scott Benner 34:04
okay. And do you think she ever Googled this on her own?

Unknown Speaker 34:08
No, she's too busy making tick tocks. I'm

Scott Benner 34:12
sorry she doesn't have time to worry about this. So do you don't believe at any time that she thought to herself, I might die or this, or I have cancer, something horrible could happen to me. She don't think she thought about that. Yes,

Melissa 34:23
I haven't completely asked her if those thoughts crossed her mind. I know she's had a few moments of why does everything happen to me? Like her brother said, but yeah, I think we tried to make her understand the facts of what her diagnosis entailed. And I don't think she ever thought of like the dying thing. She does ask sometimes, like, Is my cancer going to come back? And you know, that's when I tried to put into terms that a 12 and a half year old will understand in regards to what we need to do and why it's so important that she. Takes her Synthroid on time, you know, at least an hour before she eats. And she looked at me the other day and she goes, I just have to make sure I don't have fiber, because that's what Dr Kasturi said. And I'm like, Okay, fine.

Scott Benner 35:13
Wait. She thinks she's afraid of fiber. No, she her

Melissa 35:17
and the pill. Yes, her endo said that it's, it's all it's, you only have to wait an hour if you're going to eat something that contains fiber. And I said, here's the deal, we're going to go with what our mayo doctor said, and you're going to wait an hour. She doesn't eat breakfast in the morning anyway, really. So no harm, no foul. But yeah, she tried. So I know she's listening when, at times, I know she's listening to what doctors are saying to her, so I have to kind of give her credit in regards to that. But again, the importance of her taking her meds on time and making sure that we are getting her blood draws and ultrasounds every, you know, six to eight weeks to check the levels, because I said, then the next two steps could get scary. If we have to get there, we can kind of talk about that if you want me more. In all of my research, everybody has been saying, Okay, so here we are. The next step after you have thyroid cancer, is radioactive iodine therapy, okay? And it's literally a pill that the nuclear team brings, and you ingest this pill, and it's designed to destroy any remnants of the thyroid. And one fascinating thing we did have a follow up at Mayo, you know, six weeks or so after her surgery. It was just kind of a consult with a pediatric endo who has treated patients that have had thyroid cancer. And it was really cool how she explained this. So, you know, if you think about when somebody has a, you know, a kidney transplant or a heart transplant, when they take out those organs, it's like, you know, clunk, you take it out, and you put it in the specimen tray, and then you put the new one in. Well, with the thyroid, it's kind of like a gooey like organ, so even when you remove the thyroid, if you when you get all of it out, there's going to be remnants still within your body, right? So that's why we have to make sure that her TSH is suppressed, because we want to make her pituitary gland as quiet as possible and trick it into thinking like, Oh, you're already making TSH. I don't need to activate to have the thyroid make more. Because if those thyroid cells continue to grow or create new ones, then there can be a reoccurrence

Scott Benner 37:43
I see, and could that be anywhere in the body at that point? Then it

Melissa 37:47
could, and I learned that with our follow up as well. So this radioactive iodine pill terrified me. I was sick to my stomach. Got the two follow ups because I was trying to prepare myself for both our local endo and the mayo endo to say she needs to do this. And from what I understand, you know, years and years ago, it was the like you have thyroid cancer, you do the RAI after that's the Rai is radioactive iodine therapy, and so it's just that's what everybody did. But then now that many years have passed, there is a higher occurrence for secondary cancers with these patients, people are getting lung cancer and breast cancer and neck cancer after fighting thyroid cancer and getting the RAI

Scott Benner 38:39
because there's free floating remnants of the thyroid left behind that eventually end up somewhere. Is that the idea? I

Melissa 38:47
guess. I don't know the exact cause, because the iodine pill is what destroys all the thyroid, but I don't know. That's a good question. I don't know exactly what it does, or if it affects the lymphatic system or what causes it. But there's also fertility issues. And I get it, if she was a, you know, a 60 year old woman with thyroid cancer, fine, give her some give her some nuclear medicine. But she's a 12 and a half year old, and, you know, with I'm not making decisions based on the fact that she might not be able to have a child, or I've also heard nightmares about people that have had terrible dental issues after taking our AI. So back to those follow ups. I really was terrified. I'm like, they're going to make me do this. They're going to make me do this. And I'm going to say I don't want to, but my husband's, you know, my my piece, and he's like, let's just listen. Let's just listen to what they're gonna say. And I did, and luckily, both of them were okay with what we're calling watch, which is the checking her blood every six to eight weeks, getting an ultrasound every six to eight weeks. And another thing that the mayo doctor told me that made me feel better was there is a step before the REI treatment that I hadn't I probably wrote it in search, but I saw radioactive uptake. I saw radioactive I'd well as I was researching this, every time I saw the words radioactive uptake scan, not, but not, but, and radioactive iodine therapy, I think in my brain, I thought they were the same thing. Oh, okay, but, but they're actually separate. And so if her TSH levels, you know, her t4 and all the other good stuff. If we have changes in that, we could go back to Mayo and get that uptake scan, which it will light up that still has fire thyroid cells, and then that could inform our decision as to whether or not we think she's okay to still continue to wait and watch, or if we would want to go forward with the radioactive iodine therapy with the pill.

Scott Benner 41:09
So I want to say that this is just chat GPT, but secondary cancer after thyroid cancer removal, also called a secondary primary cancer, can occur through several pathways, genetic or biological susceptibility, multiple endocrine neoplasia, Cowden syndrome, Lee Froman syndrome. These conditions raise the overall risk of developing multiple types of cancer, not just thyroid cancer. So even if thyroid cancer is completely removed, the underlying biological terrain is still high risk. Radioactive iodine therapy side effects after thyroid cancer removal, many patients receive radioactive iodine to destroy residual thyroid tissue or microscopic cancer cells, while highly effective Rai carries a small but real risk of causing secondary cancers, especially leukemia, which is most common, salivary gland cancer, bladder cancer, breast cancer, potential link, especially in younger women, this risk increases with higher cumulative doses of Rai and younger age at treatment. Okay, then recurrent thyroid cancer, returning of original cancer, even if the thyroid is removed. This is the difference between recurrence and secondary typical in lymph nodes, lungs or bones, secondary, primary cancer, completely different. Cancer, often unrelated. This is interesting environmental, lifestyle or immune factors. After thyroid cancer, a person's immune surveillance might be disrupted, combined with age, smoking, alcohol, obesity, hormonal changes, exposure to radiation and how common is this. Studies show thyroid cancer survivors have a 20 to 30% increase in risk of developing a secondary primary cancer, most common, breast, kidney, prostate, colon, leukemia, post Rai. It's a lot to take in when you're tapping it is to your kid. Geez.

Melissa 42:59
Yeah, it is. And you know, when I started learning about the RAI there's an isolation, mandatory isolation, where, like, I can't even be near her. No one in the family pets couldn't be here near her. Usually they do at least the first three days in a hospital room, and the they get food through a window, even the employees are not allowed in there. And you know where my brain went. What if she goes low in the middle of the night?

Scott Benner 43:31
Oh, how is it gonna help her? Right? Because she

Melissa 43:33
sleeps through all the arms, even the vibration puck and every alarm you can ever imagine. She sleeps like an angel, yeah? So we

Scott Benner 43:41
don't want her to sleep until she becomes an angel. So what are we going to do? Yeah, what are we going to do there? By the way, the vibration Puck, you're can. You're talking about the sugar pixel, yeah, exactly. Custom type one.com/juicebox. If you want to buy one, I think I get a little bit of money if you buy one with that link. Yeah. Wow. So what did you end up doing

Melissa 44:00
so right now, you know, I was, that's part of the reason why I was so nervous for the both of our endos to to say, Nope, we got to do this. Because I'm like, Ah, how, how is this going to work? I mean, I, you know, I like, I was to the point that I'm like, I'm done having kids. I don't really care about being, you know, exposed to radiation, because she literally when you take that pill, you're literally radioactive. You're supposed to tons of showers and drink as much water. And where you mentioned the salivary gland, it can completely damage the salivary gland, so that you're supposed to suck on sour candies during this treatment to to just constantly be stimulating your salivary glands so you don't completely destroy those too. It's just as I was researching, I'm like, I get that we don't want our daughter to ever have cancer again. But if we have this little window of if we're on what we need to be on consistently and watching, then. And it was just the cons far outweighed the pros for me. And I knew all of this stuff, and my husband is again, an a saint, but you know, and I would talk to him stuff, and he would like, he's the one that he's very scientific based, and he's like, I want to hear this from the professionals, but I'll tell you, it was really, really nice to go down to Mayo and ask specific questions and then have her just repeat everything that I had been saying to my husband for the last couple of months. That was very well, let's

Scott Benner 45:30
remember, let's remember your husband naps in the middle of the afternoon, so we can't completely trust him.

Speaker 1 45:35
Occasionally, it's just appetizers, right? I

Scott Benner 45:38
love that you said appetizer. That's an appetizer for later going to bed. Is that correct? Yes, exactly. I'd never heard that phrase before. Are you still doing checkups right now? She's still getting, like, blood work done on a pretty consistent basis.

Melissa 45:53
Yeah. So ironically, her last day of school, or our last day of school, was June 12, and she had an appointment on June 13 to have an ultrasound and a blood draw. Well, she decided to go into DKA for the first time in six years. Wow. So we had to get a bunch of blood draws. And here I am. I've said, Okay, well, can you please make sure that you're testing for everything that our endo called for, since you're consistently taking her blood to check her onion gap and all of our other levels to get her out of D, K, so make sure that everything is being checked. And that's when we got the point to one, but the one that they missed, and I'm just a little irritated because I specifically asked it's the antibody, the tumor marker, that takes, like, three to five days to come back. And I asked one of the employees, I said, I want to make sure that that tumor marker, thyroglobulin, is being checked as well, because I know it wouldn't be in her my chart because it takes a couple of days. And she told me, yep, I'm pretty they did everything well. Then we had a week later, we went to her endo check, and didn't have that. It was It wasn't there. So he was okay. We have another blood draw now, at the end of August, to do another check for all of those levels. And we have to check her vitamin D is like terribly low. We have to check her calcium as well, because during surgery, he also did this part's really cool. He did what's called a parathyroid auto transplant. What's that? So in your thyroid, you have four parathyroids, and they control your calcium level. Yeah, well, he wanted to make sure that they weren't cancerous, so he took one out, gave handed it over to somebody in the room, probably tossed it to him, who knows? And they checked it, tested it right then and there, there was no cancer cells. So then, then he put it back in. And is that how that works? I guess. So I don't know. Jeez, yeah, so the only thing we had to do after that was for the days right after her surgery, if her lips and fingers and toes got tingly, it meant that her calcium was low and she had to take Tums. So for like, two weeks, she had to take Tums two times a day, far enough away from her Synthroid that that wouldn't be improperly absorbed after a while, like I said, let's see. Let's stop taking the Tums to see. And she hasn't. Yep, she hasn't felt tingly at all since.

Scott Benner 48:29
Oh, geez, that's all very weird. It's interesting, though, isn't it? I mean, like, if it wasn't happening to you, it'd be interesting. It's happening to your, you know, your kids, so it's horrifying. How about you? Are you doing okay with I know your your man could just nap if he gets upset, but how are you doing psychologically?

Melissa 48:45
I'm I'm okay. I was like, We previously said, I'm a teacher, and I was just really, really needing this summer to not do a bunch of house projects. And it just like I said, it kind of took the wind out of my sales a little bit. And I just find that I when it's relaxing time, I just, I just want to be at home and chilling and catching up on shows. I've been at the baseball diamond because our son plays Legion ball. But other than that, I've just been trying to, like, really refuel my tank, and because they always say you can't pour from an empty cup, so getting my reading in and relaxing and trying not to have too much of a to do list so I can really go back into tackling my my teaching job in the fall. So is that working so far? Yeah, I I still feel like the summer is just blasting by but, but, yeah, it's been nice getting some sun on the ball fields. And she has cheerleading starting soon, and my son has baseball and football coming up. And then those kind of overlap with the schedule. And then there's he does lifting in the morning too. So I'm technically just a chauffeur. For a lot of the summer as well.

Scott Benner 50:01
Yeah, she's just an Uber driver at this point, right?

Speaker 1 50:04
But I don't get paid well. I don't know what to

Scott Benner 50:08
tell you about that those kids are not going to start working anytime soon. I don't know, not with all those activities. I know. Can I ask you, how often, daily, weekly, more or less hourly. Do you think the words cancer? Like, that's my question. Like, how if you woke up today and you weren't going to talk to me, would you even think about it?

Melissa 50:27
Probably not the actual word cancer. No, I would, for sure, think of medication, because, I mean, she's pretty good at remembering, but you know, it's just a slippery slope. And I know that her missing a day isn't going to be terrible, but it's just, I want to build those good habits of being responsible, because it's just another thing that she's going to have to deal with for the rest of her life.

Scott Benner 50:50
But I also think missing a day leads easily to missing a week, you know

Melissa 50:54
for sure, right? For sure. Yeah. So, I mean, if you would have talked to me in February, it was many, many, many, many, many times a day I thought of the word cancer, and why, and how are we going to tackle this, and what's the best decisions, and who do I listen to? And who do I make? Listen to me? Yeah, but that's diminished as this treatment has gone on and was very successful so far. So

Scott Benner 51:22
even though, obviously, the prognosis was good from the beginning, and you know, this is a thing that many people are treated for and have good success with, do you still take a minute in the early part, like, almost incapable of not? Do you think about death when that, when this comes up,

Speaker 1 51:39
what do you mean capable of not? I know that, like

Scott Benner 51:43
this is not something that kills people regularly, right? Still, when someone says cancer, does it make you more aware of, I don't know, the fragility of life. Like, do you have moments like that where you think about those things, talk about those things with your husband? Has it changed anything about how you deal with your children? Or, like, has it made any big shifts for you?

Melissa 52:01
Yeah, a little bit. Just, you know, it's hard. It's kind of hard to answer that, because I know some people say, like, oh, things aren't given to people that can't handle it, kind of thing. You know, sometimes I'm like, This isn't fair. Like, why did this happen to our 12 year old? Why didn't it happen to me? You know, like, we would always take the type one from our kid, we would take any illness from our child to make it so they didn't have to deal with it. But a lot of people kept saying, through this, you know, everyone, Oh, I'm so sorry. This is terrible news. She's a rock star, but a lot of people kind of said something like, she's destined to do something great, you know. And I kind of hold on to that because it isn't fair that this has happened to my child. Technically, she had cancer when she was 11 years old, because she had just turned the week prior to finding out to age 12. And you know, it wasn't fair that she got type one either. But again, we are the kind of family that we just deal with the hand that is dealt and move forward and figure out the best way to do it and make decisions together and keep on trucking along. I guess,

Scott Benner 53:10
no, that's a good way to think about it. Honestly. I was just wondering. I just wondering, what happens, you know, like behind the scenes, you know, in the back your head, when conversations start happening like this, because it's not a, I mean, it's not a thing many people have to talk about. And I was wondering how it might have changed your perspective, or anything like, like you haven't gotten like, like, super like, Hey, we're gonna go on more vacations, or we're gonna like you. It hasn't gotten to that

Melissa 53:35
part. No, I'm always for more vacations, but

Scott Benner 53:39
I've always been for more vacations? Yes, very close vacation.

Melissa 53:43
Yeah, but maybe a little bit of you know, encouraging my kids and me to, like, spend more time together. It's just the four of us were just together for the entire weekend in the hotel and at the ball fields, so we get those opportunities to spend quality time together as well. Good. It did take a lot out of all of us, but we're, we're, we're coming back stronger than ever. So good for

Scott Benner 54:06
you. That's awesome. And you wanted to come on and just talk about this so people would know what to be looking for, and questions they ask, etcetera, in these situations. Yeah,

Melissa 54:15
absolutely. And like I said, the rarity of it, and by no means do I think like, oh, you know, I don't want somebody to be like, Oh my gosh, that young child. Is that something else I should be worried about? Because I definitely wasn't, but just more so than knowing that, if things like this are dealt to you, depending on their the gravity of it, you know, if you have a good support system, you can definitely get through anything. So I'm glad. I'm glad

Scott Benner 54:43
and your whole family came together since, like, friends came together, people in in her life, one

Melissa 54:49
of our local restaurants, actually. So my husband sells craft beer and works for a distributor, so one of his accounts, and my husband is. Very like he's a quiet guy, like he doesn't like a lot of attention. So this was hard for him, too. You know, he has certain days, he has 90 accounts that he goes in. And of course, every single time he went into a new establishment, somebody, they're like, how's your daughter? How's your daughter. So he was having to, it took a lot emotionally out of him with having to talk about it all of the time, constantly, that it just he he's very exhausted, in a completely different way than I'm exhausted. But one of his accounts, we absolutely wonderful, wonderful people like put together a flyer and said, Hey, we're going to do an event for you guys. And he was like, oh, like, you really don't have to. Really don't have to. They're like, nope, already on the calendar, sorry. And so it ended up being incredible, the turnout from the community. And it was actually their busiest day that they've ever had since opening. And, you know, we got to help serve the food. And so that, you know, that was just one small example of everybody that came together to really support us, especially with, you know, the traveling down to Mayo and hotel stays and medical expenses and things like that. Because if you've ever seen a mayo bill,

Scott Benner 56:18
oh, I was that was going to be my, my kind of, my ending questions was like, What did this end up costing?

Melissa 56:24
My husband does has have really, really good insurance. But before the first bill I got because, of course, I was checking constantly, the first bill that I saw was just the overnight hospital stay was $54,000 Wow, yeah. And then, oh yeah. And then my just the surgeon, was 10,000 and that, you know, that's not including anybody else, like the anesthesiologist and all the supplies and and the follow up visits and any thing like that. So,

Scott Benner 57:03
money, geez. And it's not like, you're not going to do it, so, of course, yeah, right, yeah. Oh my gosh. In the end, insurance took care of a fair amount of it. Or,

Melissa 57:13
Yes, yeah. And we're still, we're still getting some of the bills just from that follow up. And, you know, I have to, I've been messaging Mayo every once in a while, and there's some fees that come with just a simple online message that the endo response to, because I get it, it takes, it takes their time. And, yeah, yeah. So insurance was incredibly helpful, which is another reason why my husband sometimes says, you know, I really do love my job, but I'm really tired, but we have to, you know, we have to keep our daughter alive, so

Scott Benner 57:46
you need this insurance. Yeah, exactly.

Speaker 2 57:49
Are the NAPS because of the craft beer? Is

Scott Benner 57:54
that part of the sales? No, maybe

Speaker 1 57:57
I'll plead the fifth on that one. It's research and development, though, right? Well, R and D, I was gonna say,

Melissa 58:06
yeah, he works really, really, really hard for our family. And you know, I love my job too, but just it his insurance is better through his work than mine. So awesome. One story I just wanted to add, we were talking a little bit little bit about the Mayo's system, you know. So she had a, like, a seven digit number, and, you know, we memorized the last couple and all of the patients were all on this big TV in the waiting room. And it's one of those things that I'll never forget. Like another family member, there was a man behind me in a recliner who had fallen asleep, and this guy was sawing logs like you would not believe just and I'm sitting there like shaking, waiting for my daughter to come out of surgery. And it just kind of made me giggle, to try to lighten the mood. Everybody was watching this screen, and it would say like in surgery, or it would say in recovery, and hers was, wasn't switching, wasn't switching. Prior to this, there's lockers that were right around the corner, so we were able to put all of her belongings in there when we had gone to go to breakfast and and you know, an employee would come out and say, you know, family of Mary Smith, and a family would get up and it to one of two things would happen. Either the employee would say, why don't you go to the lockers and get get your things, or the family would say, Should we grab our stuff from the lockers? And it was always a yes, so we're waiting and waiting. And they said, family of Rees, and we, my husband and I stood up and started grabbing what we had next to us. And and Clint, that's my husband. He goes, he goes, should we get the stuff from the lockers? And the lady goes, No, you're gonna come in. The surgeon wants to talk to you. And I was like, my heart dropped. And. My husband, he, like, I said, super, like, stoic, very calm man. And he said, Oh, I hope this isn't bad. And we went into this little room. When bad stuff happens, I I shake, and my husband sweats. His His hands are dripping with sweat, and I'm just sitting there trembling. And of course,

Scott Benner 1:00:25
you're like a dog that just got out of the bath, like it probably

Melissa 1:00:30
exactly, and we're in this tiny little room, and the nurse came in, and she just kind of looked at us and said, like the surgeon just wants to have a conversation. And then she, like, walks out, and I'm like, oh my god, oh my god. I'm like, and I like, I of course, went to the worst case scenario. I feel like I kind of blacked out a little bit because my husband said that the lady came back in because she must have, he says she read the room like could tell that we were really upset and not understanding why we were in this separate room when everybody else was being taken right to their family member, right? And so she came back in and and she looked at she goes, you know, your doctor just, he wants to go over how everything happened today, just because she's a child. And I'm like, oh, duh. Like, this doesn't happen to kids. So, like, because she was a pediatric case, it must be protocol to, like, have, like, a post operative meeting with the family. But nobody told us that. So I'm sitting there like, okay, am I leaving here with my daughter? Is she leaving here with her voice? And He came in and sat down, and when he said the words, we check the vocal nerve the whole time, and everything was perfect. I that's the only time that I, like, lost it and started crying, because I was like, okay, she's good. Everything went perfectly as best to be expected, and then we were able to be taken right to her for recovery. You're

Scott Benner 1:01:55
saying it would have been nice if someone would have come up and said, Hey, this surgeon wants to talk to you for a minute. They have good news they'd like to share

Speaker 1 1:02:04
exactly so much that would have been extremely helpful. Yes, instead of two

Scott Benner 1:02:09
wet, shaking, people crying, yes, in

Melissa 1:02:13
a small room and we had to wait there. Of course, it felt like an hour, but we were probably in there for, like, you know, anywhere between five and 10 minutes before he got in there, but he came in with a big smile, and so like, I was able to calm down pretty quickly after he entered the room, but I was just waiting to hear and it part of it is my problem of always expecting the worst, and that's something I know

Scott Benner 1:02:37
I don't know. Let's stop Melissa, like everyone else is saying, is getting go to the locker, grab your stuff, let's go to recovery, and you get, hey, come with us. The surgeon wants to talk to you and then puts you in a tiny, little room and walks away. I don't think that's you expecting the worst. That sounds like you were. That's pretty reasonable. It sounds like, Well, I appreciate you understanding that. Yes, no, please. I would have been like, Oh, great. This is another bad thing that's about to come up, and it's a cancer surgery. So, you know what I mean?

Melissa 1:03:07
My husband, his biggest fear was that they were gonna find something else, or more than what they anticipated finding. But he's far more logical than I am. I'm like, I'm like, either she's dead or she's not gonna be able to talk anymore. You know,

Scott Benner 1:03:23
terrible, my God, was that where your head was? Yes, oh, they're calling us in another room to tell us that our mute child died. Yeah, I hear what you're saying that, yeah. And then so the crying was the relief.

Melissa 1:03:35
Then, oh yeah, yeah. When he said, when he said, Oh, we are testing the vocal cord, and everything came back the way it was supposed to, and I just big sigh of relief, and the tears came, and then again,

Scott Benner 1:03:49
good, but wait that so that's something you had shown a lot of concern about initially, like, before the search, yeah, and the doctor knew that, and he was coming to take his victory lap. Hey, your kid's gonna talk great.

Unknown Speaker 1:04:02
She's gonna be sassy forever. I know you were

Scott Benner 1:04:04
worried about this, but trust me, I handled it. I just want to let you know in person how great it went. Trust me, when things go bad, they call you on the phone,

Melissa 1:04:11
right? Yeah, that's true. And he also wanted to explain the whole parathyroid auto transplant part as well, because that was something that that wasn't totally expected or explained to us prior. So he was just checking his boxes too.

Scott Benner 1:04:27
Gotcha, this is awesome. I can't believe that they drug you in that room. Such a common sense thing not to do that, don't you think, well,

Melissa 1:04:35
and I get it, when somebody is doing something that's no big deal, like they're like that did it to do, and they don't put themselves in the mindset of the people that exactly. And I mean, she was a sweet lady, I don't get me wrong, but she Yeah, a little more info would have been really, really nice there. At

Scott Benner 1:04:52
least your husband will have to lose a couple pounds on the sweating. He was probably like, this is awesome. Gosh. All right, well, I appreciate you sharing what. All this with me. I'm glad that things are going in the right direction for your daughter. Sounds like you guys are kind of taking the summer to bounce back and then keep going, which I love. Yep. How's the diabetes stuff going?

Melissa 1:05:11
Pretty good our last day when C we kind of got a pass because of the cancer. You know, it's not as ideal as I would like it, nor as good as it has been, but she's also going through puberty, and, you know, started her period last September. So there's a lot of other factors that have been kind of going to kind of not make our management as as top notch as it has been in the past. You know, I wouldn't say it took a we kind of had to take a little bit of a step back because of the cancer, but not as much I was. It was just as important to me as to make sure that she's dosing correctly. But I just think her, her bodily changes are more so what's affecting some highs that I wouldn't like to see as much, but, but

Scott Benner 1:05:58
you think that's from the removal of the thyroid. Do you think that's because you guys are pulled in the 1000 directions

Melissa 1:06:05
that the latter? Yes, for sure. Yeah, because we haven't been told Laura, have I ever read anything or learned anything that the lack of the thyroid Doesn't affect any of her numbers? But

Scott Benner 1:06:19
my expectation is, as long as the medication is being used, well, that shouldn't be an issue.

Melissa 1:06:23
Yeah, exactly, exactly. So, yeah, but we made some changes to her, her ratio at this last at this last appointment, and she just really has to do better with some of her food choices. She's quite the picky eater, so we're just, she just discovered how amazing Greek yogurt and granola is. And I'm like, Where have you been? So

Scott Benner 1:06:47
now you're learning to Bolus for that Exactly, yeah, exactly. Listen, that's going to be forever, I think, yeah, you know, yeah, finding new foods and new ways to handle them and changing settings. We had to change a bunch of art and settings recently, you know, just because it happens at times, so, you know, it's good, you're on top of it. It sounds, it sounds like you guys are really doing well. I mean, I know that's a weird thing to say after this story, but like, I'm happy for you that it sounds like that you're, you know, adapting, doing the things you need to do, and moving forward. Yeah, we feel the same. Thank you. Yeah, you're very welcome. I appreciate you sharing this with me. Can you hold on one second for me? Absolutely. Thank you.

Today's episode of The Juicebox podcast was sponsored by the new tandem Moby system and control iq plus technology. Learn more and get started today at tandem diabetes.com/juicebox check it out. A huge thanks to AG one for sponsoring this episode of the podcast and for letting us know about ag Z, that's right. Today, they introduced a G Z, a nighttime drink designed to support restful, restorative sleep with clinical studied key ingredients, including adaptogens, herbs and minerals. AG, z is a melatonin free formula that supports the body's natural sleep cycle. Use my link drink. AG, one.com/juice, box to get started right now, Dexcom sponsored this episode of The Juicebox podcast. Learn more about the Dexcom. G7 at my link. Dexcom.com/juicebox dexcom.com/juicebox, I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast. When I created the defining diabetes series, I pictured a dictionary in my mind to help you understand key terms that shape type one diabetes management. Along with Jenny Smith, who, of course, is an experienced diabetes educator, we break down concepts like basal, time and range, insulin on board and much more. This series must have 70 short episodes in it. We have to take the jargon out of the jargon so that you can focus on what really matters, living confidently and staying healthy. You can't do these things if you don't know what they mean, go get your diabetes defined. Juicebox podcast.com, go up in the menu and click on series if you're looking for community around type one diabetes. Check out the Juicebox podcast. Private. Facebook group Juicebox podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox podcast. Type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording. Wrong wayrecording.com.

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#1623 Camp and Canine Victory

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

Eleven-year-old Toby and his mom share his type 1 diabetes diagnosis, camp adventures, and life with a service dog.

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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.

Toby 0:15
Hi, I'm Toby Gustafson. I'm from Verona, Wisconsin, and I'm 11 years old, and I've been diagnosed for roughly a year and a half.

Scott Benner 0:27
If your loved one is newly diagnosed with type one diabetes and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one, our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juicebox podcast, the bold beginning series, and all of the collections in the Juicebox podcast are available in your audio app and at Juicebox podcast.com in the menu. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise. Always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin.

Today's episode of The Juicebox podcast is sponsored by the Eversense 365 you can experience the Eversense 365 CGM system for as low as $199 for a full year visit ever since cgm.com/juicebox for more details and eligibility, this episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and time and range for people with type one diabetes when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox of my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox the episode you're about to listen to was sponsored by touched by type one. Go check them out right now on Facebook, Instagram, and, of course, at touched by type one.org check out that Programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes. Touched by type one.org.

Toby 2:41
Hi, I'm Toby Gustafson. I'm from Verona, Wisconsin, and I'm 11 years old, and I've been diagnosed for roughly a year and a

Scott Benner 2:49
half. Wow. And who else is with us?

Brianna 2:52
And I'm Brianna Toby's Mom. Hi, it's

Scott Benner 2:55
cool for you guys to do this with me. Thank you very much. So Toby, you told me that you have a list of things you want to talk about. I think that's awesome. Can I ask you a couple of questions before we get your to your list, though? Yeah, okay. How long have you said you've had type one about a year, about a year and a half ish, okay. Do you remember not feeling well before you were diagnosed? Or how did that time go right before somebody told you you had diabetes?

Toby 3:20
Yeah, really tired. Most of the main symptoms with that show up with type one. And then blood draw, like after school at one point in time, and then middle of the night, went to the like at nine, I got sent to the hospital for it.

Scott Benner 3:39
So mom, you saw something was going on, and took him to the doctor for a blood test.

Brianna 3:44
Yeah, what's kind of interesting is, way back in October, which was quite a ways before he was diagnosed, the following February, he was having some digestive troubles, and so we had done some workups with his doctor, and couldn't quite figure out what it was they thought, based on one of the labs, that maybe he had intolerance to dairy. But the issues continued, and then we noticed he was kind of losing a little bit of weight in February, and it kind of came to a peak when we went for a weekend at the Great Wolf Lodge. Toby. Do you want to talk about that at all?

Toby 4:25
Yeah. So at the time, I was 10 years old, I was at the hospital on February 19, 2024 I was at the Great Wolf Lodge the week before, that's at the Wisconsin Dells. And I was taking a break, and I was super hungry, so I would have known gotten funnel cake. It was, like, big, like, at least the size of your head. It had ice cream, sprinkles, whipped cream, all that other stuff. Yeah, after I'd eaten that, i. It into a sugar coma, and it was just really tired, and I was laying down in the middle of a water

Scott Benner 5:04
park. You ate that thing and it made you so tired you you couldn't even get up and move around anymore. Basically,

Brianna 5:11
no, yeah, you fell asleep and took a real long nap in the water park, right? Yeah.

Scott Benner 5:17
And Brianna, how did that make you? Like, how did that strike you?

Brianna 5:21
Yeah, that made me feel really nervous. I had already scheduled an appointment for him the following Monday. So this happened over the weekend, and I had made the appointment because of the weight loss and the continued digestive troubles, and then when he fell asleep in the middle of a water park as a 10 year old. I knew something was seriously wrong. I didn't know what, and then he just didn't ever recover, really, from that incident in the water park. He had really bad belly pain, and we tried going out to dinner, but he wasn't feeling well enough for that. He slept on the drive home from the water park.

Scott Benner 6:00
Yeah, a lot of high blood sugar kind of issues, right? Yeah, exactly, yeah. You're waiting for the return of the blood draw. When you get it back, they just call the house and say, get to the hospital.

Brianna 6:11
Yep, exactly. And Toby had already gone to bed for the night, so we went down and woke him up.

Scott Benner 6:17
You woke him up, got him together, headed off to the hospital. Did you know that you were at that point? Did they tell you on the phone? Did they say, Hey, he has type one diabetes, or did they say you just have to go to the

Brianna 6:27
hospital? No. What actually happened is his blood test results came back through the My Chart app, and I saw them, and I saw that the suit, he had super high blood sugar. I can't remember. I think it was in the 606

Toby 6:43
and what's that, Toby, I'm pretty sure it was like 670 something. Yeah, that

Brianna 6:49
that could be about, right? And I actually had a friend and co worker whose child was diagnosed with type one a little less than a month before then, and right away, I took a screenshot of it, and I sent it to her, and I said, this has got to be type one, right? You know? What else could it be? And she was like, yeah, that, you know, could be for sure. And then we headed to the hospital. At that point, the clinic didn't actually call us back with the lab results until we were already on our way to the

Scott Benner 7:24
hospital. You saw it sooner, Toby, can I ask you a question? You don't have to be embarrassed, so if you're embarrassed, don't answer. But your mom said you were having digestive issues. Did that mean it wasn't coming out or it came out too much? Came out too much, too much. Okay, all right. Then, once you get to the hospital, do you remember Toby, like, what that was like, or were you kind of out of it at that point, not feeling well, like, what do you remember about in taking in the hospital in the next couple of days that you were there?

Toby 7:53
So right when we got there, we did a finger poke, and I was really nervous about doing it. And there was this other person there. I cannot remember her name. She did tell us her name, but she said that the middle finger doesn't hurt as bad as any of the other fingers. So I just trusted her. And then that just kept on going. So now I have scars on my finger, so now I have to switch to my ring finger.

Scott Benner 8:17
Toby, I have a question, do you think the nurse was trying to get you to give the finger to be funny and to make it a lighter situation for you. Probably, yeah, yeah, right. She was trying to be trying to make it fun for you, because you got to go like this then, right. No, no. Would you do? How'd you would you go to her this way? I just had to stick out my hand. Oh, just stuck out your hand. I mean, do you think that's true? Like, because, Toby, it's interesting, you're, you know, you're young, but I talk to a lot of people who have type one diabetes, and very often something that gets said to them in the first couple of days, that's not always, like, a real rule, you know, ends up being a rule in their head, because they think, like, well, this is the first place that they put it or told me to do it, and then they do it over and over and over again for no real reason. Like, does that feel like maybe what's happened to you? Like, did you just got it into your head, like the middle fingers, the right finger to use?

Toby 9:09
Yeah, yeah. So that, so that just went to the other hand, to the other middle finger, yeah. And then it just kept on going, so that I had to switch to a different set of fingers. How often do you test depends on how my blood sugar is. Sometimes it's not even every other day, but sometimes it's like, I don't know, like, 13 times a

Scott Benner 9:30
day, depending on what's going on. Yeah, yeah. Do you also wear a CGM? I imagine? Yes, I do. Which one? Dexcom, g7 g7 Do you have a pump? Yes. Omnipod, Omnipod five or Omnipod dash five, five, so you're automated.

Toby 9:47
Yes. How do you like that? My blood sugar has been a lot more stable on like when I'm at home. School's been a lot better than it was before, but when I was on shots, because then. Just whenever I poked, I'd be high or low.

Scott Benner 10:02
Yeah, I don't want to put words in your mouth, but when before, when you were just doing MDI, before you had a pump, and you were either high or low, was that exhausting? Was it like a lot? Did a lot of your life feel like it was diabetes? Yeah, yeah, a lot. Can you explain to me, how that how that impacts you.

Toby 10:23
Just made my life a lot more stressful and lot more stuff going on. So I did take more responsibilities.

Scott Benner 10:32
The pump is making that better.

Toby 10:35
Yeah, it's having less it's given me a lot less responsibilities than

Scott Benner 10:40
what I had. Okay, so the whole system is kind of taking up some of the extra work. Yeah, and have you felt that remove stress? For you?

Toby 10:49
Yes, it has removed a lot of stress. That's awesome.

Scott Benner 10:53
That's really great. So let's tell people before we get too deep into this. Toby, how come you're on the podcast today? How did we meet? I guess

Toby 11:00
my mom had entered me into the camp Sweeney raffling thing. You had picked someone else, but then they didn't answer. So then you'd picked again. And I got picked that crazy. And then I got sent to camp. And then I was and then I was, my mom was thinking that we would be able to do a podcast to say how it all went at all. Yeah,

Scott Benner 11:25
it was a great idea, actually, yes. So you guys, I guess, for people listening, you don't know, like, it's not uncommon for people to enter giveaways, and then when you contact them and say, Hey, you won, they just never get back to you, you know, you got to give them a little time, you know, because maybe there's an email in a junk, you know, in a junk folder, or something like that, but after a certain amount of time, like, all right, well, listen, this is your last attempt. Like, you have to answer, and no one answered. And I was like, Okay, I'll just choose again. And it wasn't even me that chose. Toby, you got picked randomly by chatgpt. I fed all the names into it. And I was like, here, pick a winner. You know, I actually gave it a long explanation of what we were doing. And then just, you know, asked it to randomly choose a winner. It shows you. And then, how long did you go to Camp Sweeney for? Like, how long are the sessions?

Toby 12:10
A little bit less than three weeks. 18 days. 18

Scott Benner 12:13
days. Yeah, and you're from the constant and Cam Sweeney is in Texas. Yep, wow. How'd you get there? Drove, no kidding, you make like a little teen hours, a little family event? Yep. Brianna, How was the ride? The

Brianna 12:30
ride was pretty uneventful. Thankfully, both of our children are really good car people. They love, you know, eating snacks and watching their tech and so the drive was pretty uneventful. Toby brought his service dog, who he also won through a giveaway that we found on the Juicebox podcast. Seriously,

Scott Benner 12:54
yeah, oh my gosh. How do you win so much stuff? It's awesome. I don't know. He's so lucky. That's really crazy. It's funny because your last name just makes me think of that movie, so I don't remember it any other way. Grumpy Old Men, right?

Brianna 13:06
Yeah, his dad's name is Jonathan Gustafson, so

Scott Benner 13:11
I just hear him yelling in my head. Is it Walter? Matthau, I can hear him yelling it like in my head. So okay, so you guys, this is interesting. The whole family drives down, and then you gotta leave in there. Now Brandon, he hasn't had diabetes that long, Wisconsin, not close to Texas. I don't assume you lived in Texas for 18 days while he was there, right?

Brianna 13:31
No, we didn't, though I really wanted to, but my husband told me that was silly and we needed to go back home. So we compromised, and we stayed for about five days. So about Toby's first week of camp, almost. And we kind of had a little family vacation down there with his brother, nice. And then we headed back from

Scott Benner 13:51
there, head back, and then just, just one per does his dad just come back and get you? Toby? Your Mom? Dad? Yeah, I did. Okay. Wow. Okay, so, all right, what did you guys do for five days in Texas? Today's episode is brought to you by Omnipod. We talk a lot about ways to lower your a 1c on this podcast, did you know that the Omnipod five was shown to lower a 1c that's right. Omnipod five is a tube free automated insulin delivery system, and it was shown to significantly improve a 1c and time and range for people with type one diabetes when they switched from daily injections. My daughter is about to turn 21 years old, and she has been wearing an Omnipod every day since she was four. It has been a friend to our family, and I think it could be a friend to yours. If you're ready to try Omnipod five for yourself or your family, use my link now to get started omnipod.com/juicebox get that free. Omnipod five Starter Kit today. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox this episode. 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, oh,

Brianna 16:07
we went to lots of parks. We went to a water park. There's this Longhorn cattle drive, okay, that we went to Brianna. How

Scott Benner 16:17
many times did your husband say we can go now? Do you say it every day or No,

Brianna 16:23
I think By day three, he started saying, why are we in Texas in the middle of summer, it is so

Scott Benner 16:29
hot. So tell people though, why? What was your anxiety?

Brianna 16:33
Well, you know, I've never left Toby with anyone overnight, I don't think except for family members. So to think about leaving him so far away for so long, that was really scary. You know, I felt confident that they would manage his blood sugars Well, which they absolutely did a great job of that. I was more nervous about just if he would feel safe and comfortable and be having a good time. And from his stories since he's gotten home, it sounds like it was a wonderful experience.

Scott Benner 17:09
Awesome. Toby, were you nervous about being left alone at camp

Toby 17:14
a little bit at first, but then, just like drifted off and it

Scott Benner 17:17
wasn't there, you didn't think about it again. How long do you think it took before you were

Toby 17:21
comfortable? Maybe day, two days.

Scott Benner 17:23
Okay? And what about camp made you comfortable

Toby 17:27
having multiple other friends there, and one other kid was actually in my camp, and that got drawn from the podcast. Cole Oh,

Scott Benner 17:37
no kidding. Oh, that's great. How many, I'm asking you, but Brianna, I don't know how many kids that end up going through the podcast this year. Was it, like, four or six or something like that? I'm pretty sure it was six. Six, right? Yeah. Oh, that's awesome. I'm so glad to, like, I mean, we just, you know, we, I don't know who he is, but I interviewed Ernie, you know, the camp director, and I remember at the end just being like, hey, you know, if you want to give away a slot, like, I'll, I'll give it away for you. And then they, I think they liked the attention that it brought. So they did it a couple more times. And we actually got people to offset some costs, if I'm not mistaken, Omnipod and US med paid for one kid to go each. And then we had a private donor who kicked in for somebody, and then the camp matched that. I think that's how we got to six. So that's just some random person who loves the camp and wanted to see a kid go to it paid for one person to go, yeah, just a lot of kind people doing kind things. All right, so Toby, what goes on at camp? What were the activities like, how much were you involved in your diabetes? How did they manage your type? One? Tell me the whole thing.

Toby 18:46
There were so many activities. I can't even name them all, but the ones that I did overall were boating and canoeing, water park hiking, adventure course, zip line, rifle range weight and weight lifting. Wow,

Scott Benner 19:03
you shot a rifle while you were there.

Toby 19:05
Yeah, do you hit anything? Yeah, I had a shot a hat, a hat. Yeah, that's very cool. And a rubber duck.

Scott Benner 19:13
Brianna, how does that make you feel like that? He got so comfortable so quickly, and did so many things. I mean, there's probably a lot of things he's never even done before,

Toby 19:21
right? I mean, yeah, rifles,

Scott Benner 19:25
Wisconsin, I'm assuming you've been hunting, but yeah, that's fine,

Brianna 19:28
yeah, yeah. He, he has been hunting before, with lots of family members who are hunters, but I was very surprised about the weight lifting. I think the first week of camp he signed up for weight lifting three times, and he continued to sign up for it throughout camp. So that was pretty cool.

Toby 19:46
Three times a day out of the five session, 545, minute

Scott Benner 19:51
groups to be there's a lot of things to do, and you can kind of go around and put your name on it and go do different things and then say, Oh, I love doing that. I'll do it more. I didn't like that. I won't. It as much, basically, oh, that's pretty cool, actually. I guess I'm gonna have to, like, veer off this for a second. You want a service dog through the podcast? Yes. How did that happen? Brianna, how did that happen?

Brianna 20:12
So you had made a post, I believe, about Louie's legacy scholarship. Oh, my God, that was you. Yes. That was back in April. And so we applied for that, and Annie from medi dogs interviewed us and then selected Toby to receive op so that was super cool. And it's been a lot of work, but really good work, and really good learning of responsibility for Toby too. I

Scott Benner 20:42
think we're gonna have to look to see if, if chat GPT likes the last name Gustafson, maybe like, I'm gonna, by the way, if I do another giveaway and you win, I'm skipping yours and picking the next person, they can't win again. You didn't enter to win a comic book from Omnipod? Did you? No, okay, good, because I'm picking the winners for that this weekend. I'm so scared you're gonna win one. So how do you like having a service dog? Toby,

Toby 21:07
really good. He's been doing a whole bunch of work. So if I he's been doing really good with lows and ties, ties we just started. But lows, he's gotten really good at

Scott Benner 21:23
does he go to school with you, or do you just use him at home? And how do you use him? He's gonna go everywhere with me. Okay, when he's done being trained completely, he's always in training. So, yeah, he's going to school next year as well. And so if I painted a picture, you're like, hanging around the house doing some stuff, and you start to get low, but you don't feel it yet. Does the dog know before you know?

Toby 21:49
Yeah, sometimes yes, he can sense like drops and

Scott Benner 21:53
all that stuff. So how does he tell you he'd boot me with his nose? No kidding. And how do you tell the difference between the dogs being playful and the dog thinks you're

Toby 22:04
low, he'll jump up at me and boop me. Okay? Like he'll try and boot me in the

Scott Benner 22:09
face, and if you ignore him, what happens? He'll

Toby 22:13
just keep booping. If it doesn't work, he'll go to mom or dad. If there's no other people that he trusts, they can go till he'll bark at me,

Scott Benner 22:24
and then once you treat, like say, you grab a juice box, and you hit the juice box real quickly. I don't exactly understand how this works, so, but does he look and go, Oh, he drank a juice box. We're good now. Or does he wait for your blood sugar to come back up before he leaves you alone?

Toby 22:37
So what would happen is he'd boot me. I put my hand out to my side and say, what is it? If it's high, his he'll put his nose over my hand. If it's low, he'll put his nose under my hand, and I'll treat him while he's still in that

Scott Benner 22:53
position, wow. And then he knows you did something about it, yeah. And

Toby 22:57
I'll do something about it. And then I'll say, all done after and then he'll just be like, Okay, I did my job, and then I'm done for now.

Scott Benner 23:05
Wow, that's kind of marvelous, isn't it? Like, really, like, Brandon, that's crazy, right? Yeah, by the only one,

Brianna 23:13
he learns so fast. It's unbelievable. He's so smart, and I can't believe how quickly he picks up on new skills when we teach him. So we're continuing to work with Annie from medie dogs to work on his ongoing training. So Toby and op get together with her twice per week right now, and then, once school starts in September, then they'll just train together once a week, and Toby and op have tasks that they do together in between to practice the skills that he's learned.

Scott Benner 23:48
Wow. And Toby, how are you enjoying? Did you have a pet prior to this? Yes, I do. What else you still do? What do you

Toby 23:56
have? He's a 14 year old golden retriever. Oh,

Scott Benner 23:59
so you have a dog already, yes, okay, but it doesn't. He didn't have a job or do anything. He just eats and poops.

Toby 24:05
Yeah, gotcha. He's just a family

Scott Benner 24:09
dog. Family dog. When your mom first came to you and said, Hey, we want a service dog, were you excited? Or were you like, I don't need that, or how did you feel about it? And how do you feel about it now?

Toby 24:18
So what happened was I had my parents had told me about it, and then we went on a call with Annie and one other person. I can't remember her name, but then we just had, like, a 45 minute conversation about it. But that was also right when my brother had his tonsillectomy, so he was, he was still talking, but not

Scott Benner 24:44
How old's your brother? Seven. Can I ask a question? Brianna, this is interesting. Today is Day How do you count the days? Do you count the surgery day as day one? Or is the second day? Day one? Oh, I don't know. All right, so today's day surgery is Day Zero. Today is day eight of Arden's tonsillectomy,

Toby 25:04
and it's been horrendous.

Brianna 25:08
Yeah, it's terrible. The recovery is awful, especially as you get older. So I'm sure hers is extra

Scott Benner 25:14
bad. Yeah, did they give him, like, narcotics to help him?

Brianna 25:19
No, they didn't. But the surgery is a lot easier recovery the younger you are, so probably by day, I don't know, 910 he was doing pretty well, okay. But I've heard for adults, it can take a month before you're really feeling back to normal.

Scott Benner 25:37
This was really something like not a thing she did lightly. Obviously, it's kind of a big deal, but she just was getting sick so often and getting tonsillitis so often, and actually, the last time, ended up in the hospital to get IV antibiotics to try to get rid of it. So she was like, I'm getting rid of these tonsils. You know, they came out. And, you know, yesterday, she said something like, I can feel the scabs rubbing against my throat, I think she said and but she hasn't spoken like she's whispered a couple of words in the last day or two, but I haven't heard her speak in like, a week. Oh, poor thing. Yeah, it's, it's pretty terrible. So she's at the point where you have to set an alarm to take the next dose of medicine before the pain starts. And if you if she's like, if it doesn't do that, it's just searing pain. And then that pain reflects, I guess, radiates, to your ear. I guess there's a nerve in your this is what I'm understanding. There's a nerve in your throat. And so not only do you have all the throat pain, but you have, like, she said, it feels like we've been talking through whiteboard a lot. And she's like, you know, when you use a Q tip and it goes all the way to the back and slips in and you get that, like, searing poke pain, she's like, that's what it feels like the whole time. And, oh, gosh. So your your son didn't talk about that way,

Brianna 26:54
you know, he's seven, so his description was not very clear. He just really didn't eat for a long time. It took a really long time before he got back to eating. Well, yeah, but he didn't really complain of a lot of pain. We just stayed up on Tylenol and ibuprofen, and it seemed like for him being a little kid, that that worked well enough for him.

Scott Benner 27:20
Yeah, no, this is probably something we should have done earlier. We just didn't, I mean, we honestly, in hindsight, we didn't really know it wasn't as bad when she was younger. But, yeah, it's pretty, pretty bad. Anyway, sorry, it was a good, good way for me to get some information about that. Okay, Toby, so camp was awesome. OP is awesome. Obviously, I must be like a hero in that house type, right? What else did I buy you guys? You better hope I give a car away one day. Be Awesome, right? You guys will be like, Oh, we won the car too. But what else was on your list to talk about?

Toby 27:53
Breakthrough T, 1d Yeah, whatever you want to

Scott Benner 27:55
talk about, you came ready with a list. So tell me what you want to

Toby 27:59
say. So breakthrough T, 1d is a research facility, and they have been a huge part in my life. And I'd be thinking a whole bunch of other kids life as well when I was diagnosed, then they had already, they gave me a stuffed animal called Rufus. It's a bear, probably a foot. It's like a stuffed bear. He wears a shirt and has like, poke sites on his hand, and then the rest of his body just covered up with it, with like, shot sites and all that stuff. I

Scott Benner 28:33
don't have a Rufus, but I do have, I gotta give some credit here to Medtronic. Like, check out this lion. Isn't that great? Yeah, that's from Medtronic. I got that at friends for life. I actually brought it home with me, because I was like, this is a nice stuffed animal. I don't know what I'm going to do with it. I think he's just going to sit on my desk. You just reminded me that he's been on the floor next to my desk for a week, and I haven't done anything with him, so I'll have to move him. So when you're diagnosed, somebody came to the hospital gave you, like, a gift basket or something like that. It had Rufus in it and other things, and that was from breakthrough. Was from breakthrough T,

Toby 29:03
1d. Yeah, I got some I got a backpack for it, for my medical stuff, a few books, nice, some other stuff.

Scott Benner 29:12
Yeah, and that made you feel, how like when you got that stuff, relieved

Toby 29:16
that people wouldn't like, understood what it what type one really is? It was

Scott Benner 29:23
nice to know that somebody understood what you were going through, yeah. What were you going through?

Toby 29:27
A lot of emotions. Yeah, tell me really scared when I got my first insulin injection. Because, I mean, no, 10 year old kid likes getting shots every time they eat, yeah, sure. And poking their finger with needles every day,

Scott Benner 29:44
so you were scared of the pokes, the needles, stuff like that, and understanding that you weren't by yourself, like alone, that other people knew about this was was valuable, yes, and that's the thing you felt on your own, not a thing your mom told you or somebody explained to. You? You felt like that? I just felt like that. Yeah, once you get out of the hospital, you're pretty young, right? Do you understand how to count carbs? Like, what is it like? What's your part in diabetes? And what's your mom's part in diabetes? Your dad's part in it when you're coming out of the hospital, my

Toby 30:18
only part for, like, the first two, three months, was being able to poke my finger on my own, doing all my stuff, just managing my blood sugar at camp. Camp actually just kind of forced me to be able to change my Dexcom on my own. Okay, but I've been able to change my Omnipod on my own for like, two, three months now, camp has been something that has just, like, brought that to me, like it's like, I can't not do it. Like they're making me do it. I have to do

Scott Benner 30:57
it. So you were able to change your CGM at camp for the first time. Yes, awesome. Man, congratulations. That's really cool. How did it feel? Were you proud of yourself?

Toby 31:07
Yeah, but I'd not do it again yet. So

Scott Benner 31:11
you did it at camp. But when you came home, you're like, Okay, listen, you guys can get back to doing this. I'm not gonna do it for now. Yeah, tell me why. What about it? I mean, are you scared of it? Is it just an extra thing you don't want to do? What's the feeling?

Toby 31:25
I'm scared of it. Because, like, I mean, what kid would want to stab a needle into their skin just by pushing a button? It's literally, like a millimeter thick needle. So, but does it hurt? I mean, depends on where you put it. If it hits like a nerve, yes,

Scott Benner 31:45
for sure, it hurts. Okay? And that happens sometimes,

Toby 31:49
sometimes it happens, but it did not happen when I did it there.

Scott Benner 31:53
What's the difference between you pushing the button and your mom pushing the button?

Toby 31:57
I don't have to hesitate about pushing it. My mom just does it,

Scott Benner 32:00
because she's not gonna feel it if it hits a nerve, right? Yeah. She's like, whatever you think. That's how it feels to her. She's like, whatever. Or no, no, no, she cares, right? Yeah, yeah, of course. So, but do you not have the same feeling about putting on the pod? Like, couldn't the pod hit a nerve or or hurt more or less one time to the next

Toby 32:21
the Omnipod just shoots itself in. All I have to do is push a button and then just clicks a few times, and that puts it in on its own. So I don't have to push the button to inject the needle on its own,

Scott Benner 32:34
right? Okay, so because you're but you are pushing a button on your phone, right?

Toby 32:39
Yeah, but it's not like I'm pushing it onto my skin and then pushing the button I

Scott Benner 32:43
see. And so it helps that the Omnipod is already on. And do you pinch when you put Omnipod on? Do you like, gather up a little skin?

Toby 32:50
I actually grab onto the outside of the Omnipod and just pull up a tiny bit? Yeah, because for some reason that helps it, because nerves are usually closer to the surface, so then sometimes that would just make it not hit as many nerves. Okay, so it's like every 10 Omnipod changes I hit a nerve or something like that. How

Scott Benner 33:14
do you find the clicking? Because it clicks right, and it's not always the same number of clicks.

Toby 33:20
Yeah. So I, what I know is that four through nine clicks

Scott Benner 33:26
gonna come somewhere between four through nine. Do you ever like when it gets to nine? Are you ever like, wow, it's taking forever, sometimes, sometimes. And you know what's happening when it injects the when it puts the cannula in? You know how it does it, right?

Toby 33:39
Yeah, just twists a knob and that unlocks the needle, and then there's a spring in there that pulls it back in. So,

Scott Benner 33:47
you know, there's a needle in the Omnipod, yeah, but you don't care about that one. No, interesting. I don't know why. And you did, and you did it fine at camp, yes, because peer pressure, like the good kind of peer pressure, you felt like everybody else is doing it. I should do

Toby 34:02
it too. No, I've just been, I've been changing the Omnipod before. I've had either of my camps. I went to Wisconsin's line camp as well,

Scott Benner 34:10
right? But I'm saying the Dexcom camp, you did it once. Oh, yeah. Did they like, were they like, hey, everybody does their own thing, or did was it like you saw everybody doing it? You thought, well, I should try it too.

Toby 34:21
I just kind of was like, Yeah, I don't, I'm not 100% comfortable with people at Camp doing it. I mean, they're called, they're college kids.

Scott Benner 34:31
So Brianna, is this a control thing for Toby? Is he

Brianna 34:34
absolutely is. So Toby is very particular about how everything gets put on his body. So he likes me to change his pods. He tolerates his dad putting on his pods, and pretty much rest of the situations. He wants to put it on himself. So at school with grandma, he wants to do it himself. I got

Scott Benner 34:58
you said, Toby, you were at that camp, and you're like. I'm not letting these nudnicks Do this. They're college kids. I'll have to handle it myself. Yeah, yeah. I see okay. That makes sense to me. That makes complete sense to me. Actually, what else is on that list there?

Toby 35:10
I have two more things, so I'm gonna just save school for last food choices. It somewhat forced me to eat somewhat healthier, because, let's say you drink like a regular soda, like every day or something, my blood sugar would just spike. So then I limit myself for like, every once in a while to a diet soda or a sugar free

Scott Benner 35:43
okay. How do you find them to be versus the regular one?

Toby 35:47
Regular spikes my blood sugar, diet or zero sugar, if it affects it's maybe 510, points.

Scott Benner 35:56
What about the taste, though? Do you prefer one over the other?

Toby 35:59
Depends on how I'm feeling? I mean, I'm usually drinking more Diet Coke or Pepsi,

Scott Benner 36:04
okay, but you but before diabetes, you drank regular soda, yeah? Like root beer and sprite. I love that you said root beer. Thank you for doing a Wisconsin thing. You know that you said root beer? Yeah? Yeah. My brother lives out there with you people in the constant so he didn't used to say words like that, but he does now sometimes, can you say roof for me, please? Roof? Yeah, that's the thing on top of your house. Yep. What is it called? A roof? What does a dog say? Rough? And if your hands have like stones on them, they are like when somebody works real hard and their hands get rough. Say that word rough. So it's rough, rough, rough, yeah, yeah, excellent. Have you ever been ice fishing? Yes, I know you have. Don't worry. I understand the whole thing. I know what's going on up there. Do you think the Packers are

Toby 36:56
awesome? Depends. Last year they weren't the best. They definitely weren't. You

Scott Benner 37:01
miss Aaron Rodgers in the time when you guys were great. No, no, you don't like Aaron

Toby 37:06
Rodgers, not really. Yeah, my dad does not. For sure, your

Scott Benner 37:10
dad doesn't like him. No, because of football or something else. You know,

Toby 37:16
well, when he lost against the Chiefs before the Super Bowl, he just slammed his helmet down the ground. Yeah. Kind of rage quitting.

Scott Benner 37:24
You think your dad, your dad quit him too in that moment. Oh,

Toby 37:28
he's just quit him overall, because language and all too.

Scott Benner 37:32
Oh, I see what you're saying. They don't like the guy in general. Do you guys? Have you ever been to a game? I've been to three now, awesome in the winter, when it's freezing cold, yep, doesn't bother you. Nope, no. You live in a different place. Was Texas, like, Did it feel like you were like, a whole world away, or did it not really make you feel like you were far from home?

Toby 37:54
After about three days, it just felt like it was normal. But when I came back, I was like, it's cold. It was like, 75 or 80, and I was on a morning walk that day, and I was wearing sweat pants and a sweatshirt.

Scott Benner 38:11
Yeah, you didn't feel like a Wisconsinite anymore. You were like, wow, it's chilly out here. Yeah, you go for morning walks,

Toby 38:17
yes, with my dog and with opened my other dog.

Scott Benner 38:21
Nice. You take them with your parents or by yourself. My mom usually goes with me. Goes with you. Awesome. Are you doing it for exercise or doing it for the dogs both, both. How else do you get exercise? Do you play sports or do anything like that?

Toby 38:34
Yeah, I do martial arts. Oh, nice. What kind um, taekwondo, Korean martial arts.

Scott Benner 38:41
Very nice. That's awesome. What else am I not asking you? What did you want to talk about? About school and diabetes?

Toby 38:47
So with school like, it might seem impossible just to go to school, but really, I don't think it is. You just have to adjust to it. Like, as soon as you get, like, adjusted after the first week or two weeks, like it doesn't feel like anything. When I first went to school and getting shots, I was like, What is this? Why am I living in this world? But then now it's like, it's nothing, like there's no big deal with it. I'll poke on my own. I'll change my Omnipod on my own if I need to. Right?

Scott Benner 39:26
Do you read Toby? Are you a reader? Yeah. I read, yeah. What kind of books do you like?

Toby 39:31
Graphic novels, and every once in a while, I'll read, like National Geographic books,

Scott Benner 39:37
yeah. Do you know how I could tell you were a reader? How you don't know? No, you use words that I wouldn't expect you to use at your age, so I figured you must have read them somewhere. You like reading, huh? Yeah, that's awesome. Keep doing that. Okay, don't get like 13 and think you're cool and stop reading. Yeah, keep reading. That'd be great. What do you enjoy? Doing at school. What's your favorite subject?

Toby 40:01
Either science

Scott Benner 40:03
or math. Okay, do you have any idea what you want to do when you're an adult? Probably neuroscience. Oh, just some neuroscience. Yeah, yeah, that's awesome. What do your parents do? Something like that for work? No, no,

Toby 40:17
my mom, I can't remember. What are you? Mom,

Brianna 40:21
I work in Special Education Administration, and dad is a teacher.

Scott Benner 40:25
Oh, you guys are teachers. That's awesome. And when you're mad at your husband, do you yell Gustafson at him? Not usually. Could you please do it for me one day? Sure, someday, just for you. I'll think of you when I do it, I swear, like in outrage. Just yell the name and then just throw your hands up there and walk away. Don't even give it any context. Be just be gone. Toby. Do you have obviously friends, right? Yes, yeah. Do you talk to them about your diabetes? Trusted friends? Yes, okay, so inner circle people, people who are close with you. Yes. What do they know about it? Like, if you got low, could they help you? Did they understand any of that?

Toby 41:02
Yeah, so one of my friend's mom is a cancer nurse, so she knows, like, all the doctor and things with all of it, because she went through every single thing of the training. So she knows, like, the doctor training and like, she knows how to help with my blood sugar as well. Yeah, so I ate at my friend's house, and I had dosed there because I was going to his little brother's basketball game.

Scott Benner 41:31
And you felt comfortable around her because she was a nurse.

Toby 41:36
I feel comfortable around most of my friend's parents because, like, they're adults that understand, but some of them don't fully understand it. Sure my neighbors, for sure,

Scott Benner 41:50
understand. Okay, you carry glucagon with you? Yes, I do. Which one do you carry?

Toby 41:55
I cannot remember. I think it starts with a T. It's a nasal spray.

Scott Benner 41:59
Oh, back to me. It

Toby 42:01
starts

Brianna 42:02
with the T now, yeah, it's, it's, it's that one. You're right,

Scott Benner 42:06
yeah, yep, back send me with a T. Tax Simi,

Toby 42:11
I bet you said backs in me. I did. That's what it is, babe. I'm just

Scott Benner 42:14
agreeing with you because you're wrong and I was trying to make you feel good because you're young.

Toby 42:18
I was like, I was like,

Scott Benner 42:19
what? Huh, it's a B. It's back to me.

Toby 42:22
I know just sounds so weird. It's a T, but, huh,

Scott Benner 42:26
it's not a T. Okay, you're, you're just misremembering it. That's all when you go look, you'll be like, Oh, it is back to me, although, uh, my favorite thing is that people, some people, call it back squeamy. I don't know. It's such a funny thing. I don't know you know what I mean. Toby, like, if I said to you, it's called back squeamy. Wouldn't you think that's probably not what it's called. It's a weird word. Who would make

Toby 42:45
that word up? Right? I don't know. I don't know what I'd say.

Scott Benner 42:49
Yeah, I gotcha. Movies, television. What do you like

Toby 42:54
if I watch movies? I'd probably watch, like Marvel movies.

Scott Benner 42:58
Did you see Superman? No, did you want to

Toby 43:02
whole bunch of people, all my friends, and whole bunch of like, all of my friends who watched it had said that it's a it's like not, it's nothing like what it they made it sound like they didn't like it. No, it's like nothing. What it looks like at the beginning or sounds like,

Scott Benner 43:23
I don't know. I enjoyed it, though. We had a good time. Now, I have not seen Fantastic Four yet. But have you seen that?

Toby 43:29
No, but I have seen one of the Fantastic Four movies. Okay,

Scott Benner 43:34
okay, well, yeah. I mean, you guys can't afford to go do that. Your mom used up a lot of money living in Texas for five days by the time you pulled out of Texas, did you say to yourself, like, I'm glad I did this, but I didn't need to, or were you happy you did it and thought it was a

Brianna 43:51
good idea? I am still happy that I did it. I think it was the right amount of time. I now feel like staying for the full 18 days would have been crazy, so I'm glad my husband talked me out of that.

Scott Benner 44:02
The right thing for you is that what you're saying, Yep, it would have been too jarring for you to just be like, Hey, get out of here, you crazy kid, and then just leave. Yeah, it was too far away. I got you. No, I completely understand. Would he have flown if that wasn't a consideration, Would one of you just jumped on a plane with him, taking him there, pushed him off the plane and gotten back on and come home like if you did it again. We're

Brianna 44:24
more of a road trip family, though. Toby and his dad did fly home, but yeah, if it was closer to us, then we probably would have just ditched him. That's what we did for the Wisconsin Lions Camp. We drove him there, dropped him off, drove home, but we knew we were only a couple hours away in case something came up.

Scott Benner 44:44
I don't know exactly where you live, and I'm not asking, but like, from my brother, I know you have to fly into one airport and like, Don't you have to go to a small airport to fly to an international airport to fly out? Like, isn't that the whole problem with Wisconsin?

Brianna 44:56
Yes, yeah. Typically you drive down to Chicago. Or fly into Chicago.

Scott Benner 45:01
First is there like a mid, mid, something, airport, Midland, mid. I can't think of it now, yeah,

Brianna 45:07
I think that's further north than us. I can't remember the name of it either. I'm

Toby 45:11
so excited. Yeah, Toby, what do you guys, I mean, we live in the Madison area, so it's not as far away from Chicago.

Scott Benner 45:18
Yeah, by the by the school. Yeah, you guys probably live incredibly close to where my brother lives, actually, oh, like, 20 minutes away from Madison. Yeah, I was only out there once. I don't know what Lake flies are exactly, but they were horrifying.

Toby 45:33
I know, yeah, they're, they're terrible. Up in, up in the up. I love what's the up Lake Michigan area a little bit further up. It's funny, like,

Scott Benner 45:44
could you say things that my sister in law says? Like, you said the Dells earlier. And I was like, I've heard my sister in law say that, then you just said the up. I was like, I've heard that too. I don't know anything about it. I just these are just words that I've heard the Upper

Brianna 45:56
Peninsula of Michigan. That's what it stands for. Up.

Scott Benner 46:00
Yeah, I would definitely call it up the Upper Peninsula of Michigan. Is Not, not a sexy name for anything. Toby, what do you not understand about diabetes that you're hoping to get as a skill? And can you tell me one thing your mom does great about your diabetes, and one thing you wish she would do differently?

Toby 46:18
One thing that I for sure, don't understand is why, why you have diabetes? No, just like why in general?

Scott Benner 46:27
Tell me make that a bigger question. Why? What? Why

Toby 46:30
is it a thing? How is it a thing? How did this all start, and all that stuff?

Scott Benner 46:36
Oh, so not even to you, but just in general. You'd love to know why, why anybody has diabetes,

Toby 46:40
yeah, yeah. Why it even happened in the

Scott Benner 46:44
first place? Right? Do you have any other medical issues? Or do other people in your family have any other medical issues?

Toby 46:51
My mom will be able to explain that with autoimmune diseases, it's more on

Scott Benner 46:55
her side. Brianna, we found something you were okay to talk about. Go

Brianna 46:58
ahead. I guess it's my turn. Toby's dad's side of the family has nothing. They have beautiful health. My side is a hot mess. Express, so both on my mom and dad's side, there's a lot of autoimmune issues. Both Toby and his brother have something called pandas.

Scott Benner 47:16
Oh, that's Yeah, I know what that is. Okay,

Brianna 47:19
yeah. So basically, when they get strep throat, then it causes behavioral changes, ticks, things like that, which that's an autoimmune disease I have had when I was in college. I had something called ITP, or immune thrombocytopenia, cause my platelets to get attacked by my body, and so my blood was not able to clot, and then I have colitis, along with both of Toby's grandparents on my side, and then his grandma and aunt and on on my Ma, like my grand, my mom and Toby's aunt and two relatives on my dad's side all have rheumatoid arthritis. We've got a little hypothyroidism, some lupus.

Scott Benner 48:10
What do you guys like? English, Irish, German, like that mix

Brianna 48:13
more like Danish, Norwegian and Swedish, a

Scott Benner 48:16
little more in that direction. Okay, yeah, all

Brianna 48:19
right, yeah, yeah. So a whole bunch, but there's a lot of auto immune. So, yeah, it's my fault. I get, I take the credit for it. Well, it's nobody's

Toby 48:29
fault, but it, yeah, last name is more Swedish,

Scott Benner 48:34
yeah, no. I mean, it's, it's great. It's incredible. Like, you really are, like, out of a comic book. Is that a common name, by the way, Gustafson. Yeah,

Brianna 48:43
I don't know. I don't think it's super common. I don't think there are any other gustafsons that Toby goes to school with. Gotcha. Okay,

Scott Benner 48:52
well, so the Okay, so there's a fair amount of autoimmune on your your both sides of your family. Yeah. Okay. And do you brand the thing you have? Is that a thing you struggle with to this day, or is it a thing that's been managed? Well,

Brianna 49:04
no, so I haven't had any issues with my platelets since I was in college. They don't really know what caused it, but it is an autoimmune issue, so that's resolved.

Scott Benner 49:18
Okay, well, that's good. Okay. So, so Toby, what's the thing your mom's awesome at, at diabetes, a lot. She's good at a lot

Toby 49:26
of us, like a whole, whole bunch of stuff. Okay, more than I can probably list she can probably list them.

Scott Benner 49:32
We don't either. But listen to me this. This episode is for one thing and one thing only. It's the highlight. What a good guy I am, and that you've won a dog and a trip to camp, I'm just, I'm teasing you. We don't need anybody else getting credit during this hour, okay? But no, your mom's good at a lot of stuff. Is that right? Yeah, that's cool. So you feel very lucky that she's thinking about it involved and everything. Yes, very much. Awesome. Is there anything she does or does? And understand that you wish was different. This is your chance. You could, you can get something

Toby 50:04
straightened out. Not I can think of at the very moment that's

Scott Benner 50:08
awesome. Isn't that great Brianna, to hear that you're awesome at

Brianna 50:10
this? Yeah. I was really nervous to hear his response. I was to a

Scott Benner 50:14
little bit actually, actually, when I asked, I was like, why don't I ask more people this question? This is a great question, but you're happy, yes, yeah. Brianna, what's the thing you wish you were a little more

Toby 50:25
adept at? Oh,

Brianna 50:27
I feel like how to manage blood sugars when you eat trashy food. That's something we're still working on. Getting that just right. You know, when you eat pizza, pasta or Chinese food for sure, mom, yeah,

Toby 50:44
I should tell the story about, like, when we had cookies at the neighbor's house.

Brianna 50:51
Oh yeah, that was really bad. So we frequently have Saturday night dinner with one of our neighbors families, and we had dinner at their house. And you know, we're we're guessing the carb count. We don't know for sure, but we're taking a rough estimate. And so we dose them for dinner, ate dinner, then they had gotten some cookies from a bakery for dessert, and we use chat GPT. We weighed the cookie and put that into chat GPT based on the type of cookie, and used that as our carb count and Toby's when we were picking up to go home, Toby's blood sugar, his alarm went off, his little alarm went off. So below 75 so I think, did we give you a juice? Maybe something we treated it there, had him help clean up. And then we're walking home, and he was just being so goofy. His body was all over the place, and he was like, I can't walk. And he was just being so silly. And he hadn't ever had a really severe low before that. We didn't know what that looked like for him. As soon as we got home, which we lived two houses from them, we did a finger poke, and I think he was maybe 32 Oh, something like that. Super low, yeah. And so then I just

Toby 52:16
threw I went into the 20s after that. Did you that could be still conscious?

Brianna 52:22
Yeah, it could have been high 20s, but so we gave him a bunch more sugar, and he actually didn't feel awful until after he was already starting to come back up. But that was super scary, and we're a little more cautious about our dosing when we don't know our carb count. Yeah, kind of since that experience,

Scott Benner 52:45
how much do you remember? How many carbs it thought the cookie was? Oh, I have

Brianna 52:49
no idea. I feel like it was 50 plus though. Oh, wow, yeah, it was a big cookie,

Scott Benner 52:56
cookie, I have to say. And I've only been to Wisconsin one time, and I'm not painting with too broad of a brush here, but I had trouble eating. Well, in Wisconsin, I don't think it's Wisconsin exactly, but, like, I was there for a number of days, always in a restaurant, like, you know, didn't have an opportunity for, like, home cooked food, because what we were there for, and a lot of stuff. A lot of the offerings were, like, greasy or deep fried, or, like, fatty or that kind of thing. And I was like, wow. Like, wow. Like, this is hard. I found myself thinking, I wonder how people who have diabetes, like, manage this. I also would say that, like, you know, non diet drinks were prevalent, you know, like, it was harder to find a diet iced tea at places. It was, you know, sugar free iced tea. It was, I had that vibe of like when you drive south down the eastern seaboard, usually right around North Carolina, you start having trouble finding just diet soda, even, like at a gas station, it just becomes very, I guess, just, I don't know geographic about how people eat, generally speaking, I know Brianna. You listen to the podcast like I'm stunned, like when I know that sounds crazy, but like when, when a 10 year old says to me, like, I drink soda, like that throws me for a loop. But I know everybody drinks soda, but it's just a thing I don't know, just in a million years I wouldn't do, like, not soda in general, like soda with sugar in it, like before diabetes even it just seems, it seems insane to me, but I know that that's not uncommon for most, you know, places and people and everything like that. I don't know how you handle something like that. I've never, never in my life, tried to Bolus for that.

Brianna 54:28
Yeah, we don't have soda in our house, and we never did, even before diabetes. But when he goes and visits grandparents, they have soda there, or occasionally, if we go out to a restaurant, so that has been a switch. I don't think we've ever tried to Bolus for a regular soda. I don't feel like Toby has had a regular soda since he's been diagnosed. What about

Toby 54:51
Denmark? Remember in Denmark how that pizza place messed up and got me just a regular Coke, and that spiked me into like 300 Parents,

Scott Benner 55:00
yeah, but you weren't true. Your mom saying you weren't trying to, like, I don't think I couldn't do it. Like I can. Bolus for like, Arden went on a boba tea kick for a while, and we figured that out. So that's got to be similar. That's a very sugary drink. She was having one of those, like, every week for a little while. She's like, I'm gonna get boba tea. And I'm like, Okay, this must be awesome. I haven't tried it because it's got, like, balls floating it. Do you know what it is? Have you ever seen it? Yes, I've seen them. Yeah, you drink the you eat. Have you ever had it?

Toby 55:30
Yeah, I've gotten one from icky sticky.

Scott Benner 55:34
Are the balls weird when you drink them? Oh, no,

Toby 55:37
that's hard to say. Usually I save them for last and I pop them in my mouth. I

Scott Benner 55:41
got you. I don't think I could do that. Maybe I'll try the next time she gets that.

Toby 55:46
Okay, if you get it like a fruity flavor, they're not as bad.

Scott Benner 55:49
Yeah, a fruity

Toby 55:50
flavor sounds good, yeah, okay. But like, the bread ones are really weird

Scott Benner 55:57
overall. Let me finish with this. Toby, do you want to go back to camp again? Very much you do. You enjoyed it that much. Gotcha. Did you make friends a lot people you're keeping in touch with now that you're home? Yes, that's awesome, too. Tell people one reason why they should consider going to diabetes camp.

Toby 56:19
You get to make new friends, meet people your age with diabetes. There's a whole bunch of activities that you can do. They give you the cards that you do. You can just, like, like, literally, there's no such thing as diabetes besides trading lows, trading highs, poking and putting on your stuff. Otherwise, like you don't even have to watch your sugars or anything,

Scott Benner 56:44
okay, kind of like a little vacation,

Toby 56:46
basically, just like you don't have to even watch anything. So they'll watch your blood sugar. They'll watch your watch when you need to change your stuff and all that.

Scott Benner 56:58
Yeah, and Brianna, they give you a different phone when you get there at Sweeney, right?

Brianna 57:03
Yeah, that's true. So as soon as we arrived to camp with Toby, they assigned him a camp phone. They turned off all of his follow stuff, they changed his password so we couldn't creep on him, even if we wanted to. I could,

Toby 57:19
though like and it's

Scott Benner 57:20
part of their system, right? I don't completely remember how it was explained to me, but they can track all the phones. Is that how it works?

Brianna 57:26
Yeah, yeah. So Toby shared that his counselor had his follow app, so his counselor was able to follow him, and then at night time, the med staff had the counselors phones, so then they followed the kids

Scott Benner 57:41
I see and Toby. Did you miss your phone for 18 days, or were you didn't mind that you didn't have it? I didn't really ever use the phone in the first place, so you don't use it for other things right now,

Toby 57:52
driving and reading. I use Libby, okay? And then you have games on your phone, yeah? But I don't use them as often as I do with like Libby prodigy, which is a math game. Okay, what's Libby? Libby is a book app where you can rent books from your public library, and then, like, there are holds on it too, just in case other people have them, because there's not an infinite amount of the books,

Scott Benner 58:25
interesting. Oh, I'm looking right now. Libby app.com, cool. Yeah. Brianna, why is he such a good kid? Has he always been like this?

Brianna 58:35
He is. He's so bright and so fun. We enjoy him. We just we're so lucky to have Toby.

Scott Benner 58:41
Toby, your parents love you. Isn't that nice?

Toby 58:43
Yeah, yeah. I think everyone's parents love them,

Scott Benner 58:48
yeah. I think so too. I really do. How about your brother? Who's the better kid? You or him?

Toby 58:55
Depends. Depends. Very much, depends,

Scott Benner 58:59
all right? Well, I really today could be different than tomorrow.

Toby 59:03
Today. Me today. You're on a podcast. No, it could change.

Scott Benner 59:07
Yeah, it probably will. Don't worry. Well, I really appreciate you guys doing this. I want to make sure, is there anything that we haven't talked about that we should

Toby 59:15
have? I don't have anything.

Brianna 59:16
You're good, mom. Yeah, I think I'm good too. Thank

Scott Benner 59:20
you. Awesome. No, it's my pleasure. I can't wait for you guys to win the next giveaway.

Brianna 59:25
We'll take a break from applying.

Scott Benner 59:27
No. I mean, why? At this point it's awesome. Like, just hundreds of people, like, I'm not kidding, right? Like, hundreds and hundreds of people are like, Oh my God, I want to win the thing. The list goes on forever and ever and ever, and it's just you've won, like, two, pretty cool. I mean, not for nothing, but what do you think it saved you? What was the cost of the camp had you had to pay it out

Brianna 59:48
of pocket? Yeah? Five grand.

Scott Benner 59:51
Yeah, yeah. I'm getting a Christmas card right Toby, something, something's gonna come to the house at the holidays for me. Yeah? Send me some of that Wisconsin popcorn. Stepped in the caramel.

Toby 1:00:01
Yeah, but the dog that's like 50 grand. Oh, my God.

Brianna 1:00:06
Well, that might be a slight

Scott Benner 1:00:08
exaggeration. Let me have at least 15. Can I just have this for a minute? Brianna, I've saved your family. $55,000 is what I'm

Brianna 1:00:15
hearing. I think you deserve more than a Christmas card.

Scott Benner 1:00:18
Toby's going to college. On me. It sounds like this is awesome. All right. Well, I'm all, I mean, Toby, is there anything nice you want to say about me right now? There's no pressure at all

Toby 1:00:27
that my parents really do like your podcast episodes, and my mom has listened to almost every single one published. Oh, I'm super happy she's coming up on that.

Scott Benner 1:00:38
I'm very happy it's it's been valuable for you, and it has Brianna, you you're learning through the podcast?

Brianna 1:00:44
Oh, absolutely. I feel like we've learned so much more through the podcast than we've learned anywhere else. And as a result, Toby's a 1c is 6.0 and that is absolutely because of what we've learned from the podcast.

Scott Benner 1:00:59
Toby, good job. Man, that's a lot of hard work. Good for you. Seriously, really well done. Man, that's awesome. Yeah, listen, I'm feeling pretty good about this right now. I feel like, I mean 55,000 in Wisconsin, that's like $7 million isn't it? Practically, yeah, is it cheaper to live in Wisconsin than other places?

Brianna 1:01:16
Probably compared to some places. It also depends where you live in Wisconsin, okay, I just figured, in the north, I think I

Scott Benner 1:01:24
just figured, if you had to put up with that much cold, it has to be cheaper. That's what I thought. I mean, it should be. I mean,

Toby 1:01:31
honestly, yeah, compared to Norway, it's a lot cheaper. Nor wait. Norway is terrible. Wait,

Scott Benner 1:01:37
Norway, like across the ocean, Norway, yeah, not like, there's not a place in Wisconsin called Norway.

Brianna 1:01:44
Well, there is a place in the up called Norway. Is there really? Yeah, but that is definitely cheaper than where we live in Wisconsin. But he's talking about Norway. We went on a family vacation to Europe last summer.

Scott Benner 1:01:58
Oh, oh, I feel like maybe I paid for that. Then that's awesome. I feel like I sent you to Norway and that where you got the pizza with the bad soda

Toby 1:02:05
might have been, but I think it might have been Denmark.

Scott Benner 1:02:09
Denmark, they make pizza in Denmark

Brianna 1:02:11
with french fries on it. Was it any good? What do you think

Toby 1:02:15
I liked it? Do you guys have like,

Scott Benner 1:02:17
like, Mom and Pop pizza there? Or if you go to get pizzas at like, Domino's or Pizza Hut or something

Toby 1:02:22
like that? I don't know. Actually, I can't remember. I think it's like, think it's like, single restaurants, like the it's not a big business, just like, one small place.

Scott Benner 1:02:33
Gotcha, hey, do you guys go to that farmer's market that's in the middle of town? Is it summer? Am I just saying something random, or am I saying something you know about,

Brianna 1:02:41
yeah, Madison farmer's market that goes around the capital,

Scott Benner 1:02:44
yeah? Like, they do, like, they kind of close off a few streets there, and there's vendors and everything. Yep, you do that. Yeah, I've been to that.

Toby 1:02:53
I mean, there's a lot of stuff.

Scott Benner 1:02:55
Toby, let me have it for a second, all right, just give it to me. Say, wow, that's amazing. I can't believe you've been to a farmer's market near my house. We don't live anywhere near each other. That crazy? Yeah, I was trying to connect. Toby, you really ruined it at the end. It's okay. Thank you so much, guys. Hold on one second for me. Okay.

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