← Juicebox Podcast: Type 1 Diabetes
Juicebox Podcast: Type 1 Diabetes
#1624 Nappetizer
01:09:45
Melissa returns to share her 12-year-old daughter’s rare thyroid cancer diagnosis and treatment, layered on top of type 1 diabetes Free (non Facebook) ** Use code JUICEBOX to save 40% at smart meter and CONTOUR DIABETES app * or...
Loading summary
Transcript231 lines
- [00:00]
A
Here we are back together again, friends for another episode of the Juice Box Podcast.
- [00:15]
B
Hello, I am Melissa and I have a daughter who is now 12 and a half and she was diagnosed with type 1 diabetes almost six years ago. Six years and a couple weeks here I'm returning to the podcast to talk about her recent thyroid cancer diagnosis and treatment.
- [00:38]
A
If this is your first time listening to the Juice Box Podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all. Look for the Juice Box 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 juiceboxpodcast.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 Juice Box 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 AG1. This episode of the Juice Box Podcast is sponsored by AG1. Learn more at drinkag1.com Juicebox later in the episode I'm going to tell you about AG1 and AGZ Z like sleep. You got it. Today's episode is sponsored by the Tandem MOBI system with Control IQ 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 Tandem's newest pump and algorithm. Use my link to support the podcast. Tandomdiabetes.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 hello.
- [02:31]
B
I am Melissa and I have a daughter who is now 12 and a half and she was diagnosed with type 1 diabetes almost six years ago. Six years and a couple weeks. Here I'm returning to the podcast to talk about about her recent thyroid cancer diagnosis and treatment.
- [02:52]
A
Wow. And you were on we're gonna 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.
- [03:00]
B
Let's see, it was. I know it was in the 800-00, but I'm not exactly sure.
- [03:07]
A
Like maybe 8 68-ish, 879 maybe. Yes. Danger Noodle 879 it says.
- [03:16]
B
Oh, okay.
- [03:16]
A
Melissa is a preschool teacher and the parent of a child with type 1 diabete. How has your life changed since then?
- [03:22]
B
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 has 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.
- [03:48]
A
So when did that, that new diagnosis come up?
- [03:51]
B
Back in like April ish of 2024 is when her endo started to notice thyroiditis. And you know your favorite word, goiter.
- [04:02]
A
It's a funny word. I don't, I don't care what people say. So they noticed the goiter on Your, what, your 10 year old?
- [04:08]
B
Well, yeah, but at that time. Yeah, well, yeah, she was, yeah, 10 or 11, probably.
- [04:13]
A
Okay.
- [04:13]
B
And he just kind of always checked it and said, you know, we should probably do an ultrasound, one of these. 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 23rd 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 thr. I mean, she was not any more tired than a preteen is, in my opinion. I have an older son as well, so I know 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.
- [05:10]
A
Okay.
- [05:11]
B
So then we had a biopsy done, which after we came back from vacation, she had the biopsy done on January 30th. That was the fine needle aspiration. It was tested and discovered that it was papillary malignant thyroid carcinoma.
- [05:30]
A
Now, prior to getting the diagnosis, when they're doing the testing, what's your like thought? What do you think they're going to find?
- [05:39]
B
I honestly, I was not mentally prepared for it to be cancer.
- [05:43]
A
Right.
- [05:44]
B
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.
- [06:07]
A
Oh my gosh.
- [06:08]
B
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, 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.
- [06:45]
A
Luckily he didn't look at me, so it wasn't a problem.
- [06:49]
B
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 nappetizer. 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. We're 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.
- [07:28]
A
Yeah.
- [07:29]
B
Like have just this negative cloud over them for this day. So 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 and 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 were really close. Like I live in northern Wisconsin, as you could probably tell.
- [08:05]
A
You know, I was going to say Saskatchewan with your accent, but I got you, it's fine.
- [08:10]
B
Ouch.
- [08:11]
A
I got you.
- [08:12]
B
Yeah. 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 awesome places. All this time, me driving around and knowing this big bombshell that I'm going to 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.
- [08:47]
A
Can you tell me how you did it without crying?
- [08:49]
B
Probably not, but no. My husband and I just sat her in between, and we said, you know how you had the needle in your neck to test it out and all that? And I said, it is a form of cancer. Because when a kid hears cancer, what they know about cancer is the big stuff. And not that this wasn't big, but everyone always says, oh, if you're gonna get canc, this one's the best one. 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, nope, 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 to 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.
- [10:09]
A
How old is he?
- [10:10]
B
He's 15.
- [10:11]
A
Oh, do you think that was meant to be comforting? Like, hey, yeah, you're getting screwed, right?
- [10:17]
B
Exactly. Yeah, that's exactly. Because that's the kind of kid he is. He's so sweet. He's amazing. They both are. And. 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 there's a ray of sunshine and positiv for the most part.
- [10:40]
A
So 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 if it does, I have no idea which way I'm going to go.
- [11:04]
B
See. And 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. The constant of the diabetes that it's like, okay, well, here's another thing.
- [11:49]
A
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 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.
- [12:13]
B
No, we caught it early. It's super rare in kids. Like, honestly, I even tried to Google it and it was like 1 in 300 million for a type 1 diabetic to get thyroid cancer. Like, it was. I'm like, oh, thanks, Google. 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. I look at it through the lens similar to. We're not quite sure how she got the type one. Um, we. We have guesses, but does that really matter? So same with the cancer is like, I don't know if the type 1 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% survival.
- [13:53]
A
Rate even when it's in the lymph node system.
- [13:56]
B
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.
- [14:24]
A
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 to take thyroid meds 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 convenient 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 1, type 2, or gestational diabetes. It's covered by all sorts of insurances. And 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@juiceboxpodcast.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 Tandem's newest pump and algorithm. The Tandem Mobi system with Control IQ technology features Autobolus, 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 and tandomdiabetes.com juicebox this is going to help you to get started with Tandem's smallest pump yet that's powered by its best algorithm ever. Control IQ 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 tandemdiabetes.com juicebox to check out your benefits and get started today.
- [16:52]
B
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.
- [17:13]
A
So can I ask you, do you know what the TSH was prior to the diagnosis for the cancer?
- [17:19]
B
Of course I do. I have a chart.
- [17:22]
A
Yeah.
- [17:23]
B
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 0.22, but that's the day she doesn't do well with blood draws and she actually fainted that day. So I asked her endo, 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. Well, it very well could have really. I, I have, I don't know. I just listen to them every once in a while. Yeah. Because, because two months prior to that she was 2.42 for her TSH.
- [17:59]
A
Right.
- [18:00]
B
And then. Oh, we got a gap here. But about six months later after that, 22, she was back to 2.63.
- [18:07]
A
So she was 2.63, but. And she had some symptoms. Her symptoms were that she was tired.
- [18:13]
B
So this is three months after he's just noticed the goiter. She was 2.63.
- [18:19]
A
Okay.
- [18:21]
B
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.
- [18:33]
A
Gotcha. It's. It's moving around a little bit.
- [18:37]
B
A little bit, yeah. But it wasn't like, totally one way or the other off the charts.
- [18:42]
A
I hear what you're saying. And then. So. So once they do the surgery, the surgery now requires medication or. No.
- [18:49]
B
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 11th, 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.
- [19:36]
A
Okay.
- [19:37]
B
He did end up taking the whole thing. She was put on 100 micrograms of levothyroxine. We had her first blood draw like, I don't know, maybe six weeks later, four weeks later, it was April 21st, and her TSH was up to 6.27. So then our local endo made the decision to put her on non generic Synthroid and 125micrograms. Her TSH is 0.21 now, and that's where we want her. Between 0.1 and 0.5 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.
- [20:22]
A
And so they found the medication level that holds her there. You all know that I drink AG1 every morning. So I'm excited to let you know about something new from AG1. It's called AGZ. AGZ 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 Juice Box podcast is sponsored by AG1. And if you're interested, check out AG1 and AGZ with my link drinkag1.com juicebox Start taking your sleep seriously with AGZ. Head now to my link drinkag1.com Juicebox to get a free welcome kit with the flavor of your choice that includes a 30 day supply of AGZ and a free frother. A frother? What is that like a whisk? Drink ag1.com juicebox to find out what a frother is. And did you know that AG1 now comes in different flavors? It does for in fact, original citrus, berry and tropical drink ag1.com juicebox links in the show notes links@juicebox podcast.com yep.
- [21:36]
B
And now at this point, we're, we're kind of done with Mayo. 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.
- [21:53]
A
I just got back.
- [21:55]
B
Oh really?
- [21:56]
A
It was at Friends for Life last week. I was at a Disney hotel all week.
- [22:01]
B
Yeah. So like, how accommodating they are and just like sugary, sweet. And the, the people that work at the Mayo Clinic in Rochester are, are very similar.
- [22:10]
A
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 reprogrammed. We walked back, they still didn't work. I was like, I was like, oh, no. So I happened to see a maintenance person. I was like, Mike. I explained. And he's like, hold on. He pulls me back into 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 mag 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 of 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, come, 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, 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 rigor Merle. 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 too. 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, or something, which is really awesome. And then on my birthday, like, what did she say? She goes, 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. 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 love.
- [24:52]
B
Oh, that's a Cool story.
- [24:54]
A
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 have left. Exactly.
- [25:02]
B
You don't need no Rice Krispies. You're fine.
- [25:04]
A
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 once 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, it does. How scary of a time in your life is that?
- [25:24]
B
Yeah, it 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.
- [25:54]
A
Did you meet people during the treatment that, you know now?
- [25:58]
B
Not really, because we. Well, we ended up going down Sunday, March 9th. 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, Type 1 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 gonna do finger pokes when she's on the table? And, you know, is she gonna have a dextrose drip? Like, I had all these questions as well. Not just the cancer questions.
- [27:01]
A
Yeah.
- [27:01]
B
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 going to 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 to her.
- [28:10]
A
Nobody offered you a Rice Krispie treat at any point during that?
- [28:13]
B
No, Scott, they didn't.
- [28:15]
A
It's a. It's a gap. 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?
- [28:33]
B
Well, you know, I spent weeks and weeks and weeks researching and options, and 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.
- [29:28]
A
Did you say we have two kids, and so far we have type 1 diabetes and thyroid cancer. What, should I wonder, is going to happen?
- [29:34]
B
That's what I say. And then he's like, well, we have two kids, one with type 1 diabetes and thyroid cancer. We can't. Like, aren't we. Aren't we good for now?
- [29:43]
A
Like, 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 a 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 conversation from the doctors leading up to it, like, listen, 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 simple?
- [30:13]
B
Yeah, to the point that it was quite a bit of a wait, obviously. Like, January 30th is when we found out it was cancer or shortly after. And then, like, think about March 11th is her surgery. My husband would say, like, what's the holdup here? And 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.
- [30:56]
A
So, like, made it seem like it was less worrisome.
- [31:00]
B
Exactly.
- [31:00]
A
Because they. Yeah, because it wasn't like, we have to get this done right now.
- [31:04]
B
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 to.
- [31:17]
A
Yeah. I want to know what. What'd you learn more about during this process?
- [31:21]
B
The thyroid.
- [31:22]
A
Yeah. I mean, tell. Tell me what you would want people to know for sure.
- [31:26]
B
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.
- [32:08]
A
Yeah, no, I was going to say that though. Like you said, it was incredibly rare. And I mean, that's going to be your answer why they don't do it.
- [32:14]
B
Yeah, I suppose. But how hard is it to feel someone's neck for a second?
- [32:18]
A
I don't know. 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 with 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? I don't know where you draw the line, I guess is my question.
- [32:39]
B
I guess, yes. An alien toe.
- [32:41]
A
You never know. I don't know, like all the things that happen 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 just upsetting once it happens. How did she deal like you said? You first told her? She cried a little bit. She went in her room. Her brother helped her by telling her, wow, a lot of stuff happens to you. What a bummer. But then those months, then in between scheduling the surgery, the surgery actually happening, what do you think they were like psychologically for her?
- [33:14]
B
We had a ton of support from our family, friends and our community. Actually, another reason why I was like, should I be more terrified and scared and worried and upset about this? And 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, they had shirts made and it said, we play for Reece. She just felt so much love and support from everybody and messages from friends saying, you're gonna be okay. And we had people reach out from campuses that made her analyze 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 okay.
- [34:05]
A
And do you think she ever googled this on her own?
- [34:08]
B
No, she's too busy making tick tocks.
- [34:12]
A
I'm 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.
- [34:23]
B
Yes. 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 try 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.
- [35:13]
A
Wait, she thinks she's afraid of fiber?
- [35:15]
B
No, she.
- [35:17]
A
Her endo with the pill.
- [35:19]
B
Yes. Her endo said that 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 gonna 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 the next two steps could get scary if we have to get there. We can kind of talk about that if you want. Unless you had enough.
- [36:09]
A
Yeah, tell me more.
- [36:10]
B
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. 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, 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, when you get all of it out, there's going to be remnants still within your body.
- [37:18]
A
Right.
- [37:19]
B
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.
- [37:44]
A
I see. And could that be anywhere in the body at that point?
- [37:46]
B
Then it 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 because there's.
- [38:41]
A
Free floating remnants of the thyroid left behind that eventually end up somewhere. Is that the idea?
- [38:47]
B
I guess I don't know the exact cause because the iodine pill is what destroys all of 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, 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 rai. 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 going to 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 a lot better was there's a step before the REI treatment that I hadn't. I probably put it in search, but I saw radioactive uptakes. I saw radioactive iodine as I was researching this. Every time I saw the words radioactive uptake scan, not butt tick, not butt tickets, and radioactive iodine therapy, I think in my brain I thought they were the same thing.
- [40:31]
A
Oh, okay.
- [40:32]
B
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 anything in your body that still has 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.
- [41:09]
A
So I want to say that this is just chatgpt, 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, Li 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 reoccurrence and secondary typical and 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 into your kid. Jesus.
- [43:01]
B
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?
- [43:31]
A
Oh, how is it going to help her? Right, right.
- [43:33]
B
Because she sleeps through all the alarms, even the vibration puck, and every alarm you can ever imagine. She sleeps like an ang. Yeah. So.
- [43:42]
A
But we don't want her to sleep until she becomes an angel. So what are we gonna do? Yeah, yeah, yeah. What are we gonna do there? By the way, the vibration puck. You're can. You're talking about the sugar Pixel.
- [43:51]
B
Yeah, exactly.
- [43:52]
A
Customtypeone.com juicebox if you want to buy one. I think I get a little bit of money if you buy one with that link.
- [43:58]
B
Yeah.
- [43:59]
A
Wow. So what did you end up doing?
- [44:01]
B
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 during this treatment too, 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 it was just the cons far outweighed the pros for me. And I knew all of this stuff, and my husband is again, a saint, but you know, and I would talk to him this 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.
- [45:30]
A
Well, let's remember. Let's remember your husband naps in the middle of the afternoon, so we can't completely trust him.
- [45:35]
B
Him, occasionally it's just nappetizers. Right.
- [45:39]
A
I love that you said nappetizer. That's an appetizer for later going to bed. Is that correct?
- [45:43]
B
Yes, exactly.
- [45:44]
A
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.
- [45:54]
B
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.
- [46:10]
A
Wow.
- [46:10]
B
So we had to get a bunch of blood draws, and here I am. I 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 anion gap and all of our other levels to get her out of dka, so make sure that everything is being checked. And that's when we got the 0.21, 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.
- [47:01]
A
They didn't have that.
- [47:03]
B
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.
- [47:24]
A
What's that? That.
- [47:26]
B
So in your thyroid, you have four parathyroids and they control your calcium level?
- [47:31]
A
Yeah.
- [47:32]
B
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 skin and.
- [47:52]
A
Is that how that works?
- [47:53]
B
I guess so. I don't know.
- [47:55]
A
Geez.
- [47:57]
B
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.
- [48:29]
A
Geez, that's all very weird. It's interesting, though, isn't it? I mean, like, if it wasn't happening to you, it would 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?
- [48:45]
B
I'm. I'm okay. I was like. 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 sails 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. 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.
- [50:02]
A
Yeah, he's just an Uber driver at this point. Right.
- [50:05]
B
But I don't get paid.
- [50:07]
A
Well, I don't know what to tell you about that. Those kids are not going to start working anytime soon. I don't. Not with all those activities.
- [50:14]
B
I know.
- [50:14]
A
Can I ask you how often daily, weekly, more or less hourly, do you think the word's 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?
- [50:28]
B
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.
- [50:51]
A
But I also think missing a day leads easily to missing a week, you know?
- [50:55]
B
For sure. 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? But that's diminished as this treatment has gone on and was very successful so far.
- [51:22]
A
So even though obviously the prognosis was good from the beginning, and this is a thing that many people are treated for and have good success with, 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?
- [51:40]
B
What do you mean capable of not?
- [51:42]
A
I know that, like, 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?
- [52:02]
B
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, I kind of hold on to that because it, 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 finding out to age 12. And you know, it, 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.
- [53:09]
A
I guess 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 of 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, about. And I was wondering how it might have changed your perspective or anything like that. 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 part.
- [53:36]
B
No. I'm always for more vacations, but I've.
- [53:40]
A
Always been for more vacations. Yes. Very pro vacation.
- [53:44]
B
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 opportunities to spend quality time together as well.
- [54:00]
A
Good.
- [54:01]
B
It did take a lot out of all of us, but we're, we're coming back stronger than ever. So.
- [54:06]
A
Good for you. It's awesome. And you wanted to come on and just talk about this so people would know what to be looking for and questions to ask, etc, in these situations.
- [54:15]
B
Yeah, 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 out. 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, you, if you Have a good support system. You can definitely get through anything.
- [54:42]
A
So I'm glad. I'm glad. And your whole family came together since like friends came together, people in, in her.
- [54:47]
B
Yeah.
- [54:48]
A
Her life.
- [54:49]
B
Community. One of our local restaurants actually. So my husband sells craft beer and, and works for a distributor. So one of his accounts. And my husband's 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 asked, 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's very exhausted in a. 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 gonna do an event for you guys. And he was like, oh, like you really don't have to. Really don't have to. And they're like, nope, already on the calendar. Sorry. And so it, it ended up being incredible, the turnout from the community and. 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.
- [56:18]
A
Ooh. Oh, I was. That was going to be my. My kind of my ending questions was like, what did this end up costing thing?
- [56:25]
B
My husband does has. Have really, really good insurance. But 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.
- [56:41]
A
Wow.
- [56:42]
B
Yeah. And then Tums are expensive. 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 the follow up visits and anything like that. So it's a lot of money.
- [57:04]
A
Geez. And it's not like you're not going to do it, so.
- [57:07]
B
Of course.
- [57:07]
A
Yeah. Right. Oh my gosh. In the end, insurance took care of a fair amount of it or.
- [57:14]
B
Yes. Yeah. And 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 responds 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. 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.
- [57:46]
A
Yeah, you need this insurance.
- [57:49]
B
Yeah, exactly.
- [57:50]
A
Are the naps because of the craft beer? Is that part of the sales?
- [57:56]
B
No, Maybe I'll plead the fifth on that one. It's research and development though, right?
- [58:03]
A
Yeah. A lot of R and D. I.
- [58:04]
B
Was going to say, yeah, he works really, really, really hard for our family. And you know, I love my job too, but just his insurance is better through his work than mine.
- [58:18]
A
So. Awesome.
- [58:19]
B
One story I just wanted to add. We were talking a 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 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 an employee would come out and say, family of Mary Smith. And a family would get up and one of two things would happen. Either the employee would say, why don't you go to the lockers and 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. And they said, family of Reese. And my husband and I stood up and started grabbing what we had next to us. And Clint, that's my husband, 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 shake. And my husband sweats. His hands are dripping with sweat. And I'm just sitting there trembling. And of course, between the two of.
- [60:26]
A
You, you're like a dog that just got out of the bath. Like, it probably.
- [60:30]
B
Exactly. And we're in this tiny little room, and the nurse came in and she just kind of looked at us and said, the surgeon just wants to have a conversation. And then she 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.
- [61:03]
A
Right.
- [61:04]
B
And so she came back in and she looked as she goes, 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 checked 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.
- [61:56]
A
You're 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. It they have good news they'd like to share.
- [62:04]
B
Exactly.
- [62:05]
A
That might have been helpful.
- [62:06]
B
Thank you so much. It would have been extremely helpful. Yes.
- [62:09]
A
Instead of two wet, shaking people crying.
- [62:13]
B
Yes. In 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 ten minutes before he got in there. But he came in with a big smile and. And so, like, I was able to calm down, down pretty quickly after he entered the room, but I was just waiting to hear. And. And part of it is my Problem of always expecting the worst. And that's something I need, I don't work on. But.
- [62:39]
A
No, no, no, 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 sounded like you. Where. That's pretty reasonable. It sounds like.
- [62:56]
B
Well, I appreciate you understanding that.
- [62:58]
A
Yeah, no, please. I would have been like, oh, great, this is another bad thing. It's about to come up and it's a cancer surgery, so you know what I mean?
- [63:07]
B
Come on. My husband, his biggest fear was that they were going to 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 going to be able to talk anymore, you know? That's terrible.
- [63:24]
A
My God. Was that where your head was?
- [63:26]
B
Yes.
- [63:27]
A
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 then.
- [63:37]
B
Oh, yeah, 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. Get.
- [63:49]
A
Go ahead. Wait, wait. That. So that's something you had shown a lot of concern about initially, like before the. Yeah. And the doctor knew that and he was coming to take his victory lap. Hey, your kid's going to talk. Great.
- [64:02]
B
She's going to be sassy forever.
- [64:04]
A
I know you were worried about this, but trust me, I handled it. I just wanted to let you know in person how great it went. Trust me, when things go bad, they call you on the phone, Right?
- [64:12]
B
Oh, yeah, that's true. And. 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.
- [64:28]
A
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?
- [64:35]
B
Well, and I get it. When somebody's doing something that's no big deal. Like they're like. And they don't put themselves in the mindset of people that. Exactly. And I mean, she was a sweet lady. I don't get me wrong. But. But she. Yeah, a little more info would have been really, really nice there.
- [64:53]
A
At least your husband. You'll have to lose a couple pounds on the sweating. He was probably like, this is awesome. Gosh. All right, well, I appreciate you sharing 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.
- [65:10]
B
Yep.
- [65:10]
A
How's the diabetes stuff going?
- [65:12]
B
Pretty good. Our last day went. See, we kind of got a pass because of the cancer. 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 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 top notch as it has been in the past. 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. 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.
- [65:58]
A
But you think that's from the. The removal of the thyroid or you think that's because you guys are pulled in the thousand directions?
- [66:06]
B
That. The latter, yes, for sure. Yeah. Because we haven't been told, nor have I ever read anything or learned anything, that the lack of the thyroid doesn't affect any of her numbers.
- [66:18]
A
But, yeah, my expectation is as long as the medication's being used, well, that shouldn't be an issue.
- [66:24]
B
Yeah, exactly. Exactly. So, yeah. But we made some changes to her ratio at this last. 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?
- [66:46]
A
So now you're learning to bolus for that?
- [66:50]
B
Exactly. Yeah, exactly.
- [66:51]
A
Listen, that's going to be forever, I think.
- [66:54]
B
Yeah.
- [66:54]
A
You know.
- [66:55]
B
Yeah.
- [66:55]
A
Finding new foods and new ways to handle them and changing settings. We had to change a bunch of Arden 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. It sounds like that you're, you know, adapting, doing the things you need to do and moving forward.
- [67:17]
B
Yeah, we feel the same. Thank you.
- [67:19]
A
Yeah, no, you're very welcome. I appreciate you sharing this with me. Can you hold on one second for me?
- [67:23]
B
Absolutely.
- [67:24]
A
Thank you. Today's episode of the Juice Box Podcast was sponsored by the new Tandem MOBI system and control IQ technology. Learn more and get started today at tandomdiabetes.com Juicebox Check it out A huge thanks to AG1 for sponsoring this episode of the podcast and for letting us know about agz. That's right. Today they introduced agz, a nighttime drink designed to support restful restorative sleep with clinical studied key ingredients including adaptogens, herbs and minerals. AGZ is a melatonin free formula that supports the body's natural sleep cycle. Use my link drinkag1.com juicebox 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 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 Juice Box Podcast. When I created the Defining Diabetes series, I pictured a dictionary in my mind to help you understand key terms that shape type 1 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. Juiceboxpodcast.com go up in the menu and click on Series. If you're looking for community around type 1 diabetes, check out the Juice Box Podcast. Private Facebook Group juice box podcast type 1 diabetes but everybody is welcome. Type 1 type 2 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 juice box podcast type 1 diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording wrongwayrecording.com.