Sugar Mama's Podcast: Type 1 Diabetes

#68 When Your Kid is in a HUGE Clinical Research Trail for Teplizumab: an interview with my buddy, Shannan

April 27, 2022 Katie Roseborough Season 1 Episode 68
Sugar Mama's Podcast: Type 1 Diabetes
#68 When Your Kid is in a HUGE Clinical Research Trail for Teplizumab: an interview with my buddy, Shannan
Show Notes Transcript

This is episode 68 of the Sugar Mama’s Podcast and today I am chatting with my very good friend, Shannan Critzer. Shannan is a 5th grade teacher, mom to a truly amazing young lady living with type 1 diabetes,  and she is just a wonderful, kind and funny human being. Shannan shares with us today what it is like to have your T1D participate in a MAJOR clinical research trial testing the drug, Teplizumab. For those of you who haven’t heard of Teplizumab in the type one research space, it is an IV infused drug that has shown great promise in protecting and prolonging the insulin producing life of beta cells of newly diagnosed T1Ds as well as those who may have the auto antibody markers and are trying to delay or even prevent clinical onset of type 1 diabetes. It’s truly fascinating. I know you are going to enjoy this interview with Shannan! Enjoy!
 
Want to contact Shannan and discuss clinical research trials?! Find her in Instagram @scritzer711

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Katie:

This is episode 68 of the sugar mamas podcast. And today I'm chatting with my very good friend, Shannan Critzer. Shannan is a fifth grade teacher. God bless her soul. She is also a mom to a truly amazing young lady named Delainey living with type one diabetes. And Shannan is just a wonderful kind and funny human. She shares with us today. What it's like to have your T one D participate in a major clinical research trial, testing the drug Teplizumab. For those of you who haven't heard of and the type one research space, it is an infused drug that has shown great promise in protecting and prolonging the insulin producing life of beta cell. Of newly diagnosed T1 DS, as well as those who may have the auto antibody markers and are trying to delay or even prevent clinical onset of type one diabetes. It's truly fascinating. I know you're going to love this interview with Shannon, so let's go ahead and get. You're listening to the sugar mamas podcast, a show designed for moms and caregivers of type one diabetics here. You'll find a community of like-minded people who are striving daily to keep their kids safe, happy, and healthy in the ever-changing world of type one. I'm your host and fellow T one D mom, Katie Roseboro. Before we get started. I need you to know that nothing you hear on the sugar mamas podcast should be considered medical advice. Please be safe, be smart, and always consult your physician before making changes to the way you manage type one diabetes. Thanks.

Shannan:

My name is Shannon and I am a basic school teacher who was walking around life thinking everything was fine. And then in March of 2021, my daughter was diagnosed with type one diabetes.

Katie:

That's exactly right. And Shannon is my friend in real life. Meaning I get to see her on a somewhat regular basis, like in the flesh, which is so fun. Shannon is super fun. Just so everybody knows. I feel like it's going to take a massive effort for us not to get derailed and

Shannan:

Yeah.

Katie:

with the shin shenanigans. But so yeah, the podcast connected us and Shannon actually just was being the wonderful, nice person that she is emailed me to just say, thank you. And that they were really enjoying the show and she was listening with her daughter. And then she said something about driving to Orlando, which is a very drivable distance for me too. And I was like, oh, where, where are you? I'm, I'm pretty close to Orlando myself. And she told me where she lived and I was like, no way. That's the city that I live in too. We both have nine year old daughters with type one diabetes. We both drive white Honda Odyssey minivans. So

Shannan:

Obviously that's the cool kids club.

Katie:

yeah, obviously, so Shannon and I, we, we get to see each other in real life, which is really fun. It's shockingly right now, though, we're recording this over the internet because I kind of made the executive decision that if we were recording in person, it might not go well.

Shannan:

we're going to get off track. made notes, like I said, I made notes. I have my, I have my other computer right here. I have my phone up with notes. So we're going to do, we're going to do this. Great.

Katie:

All right, Shannon, we're going to go ahead and get started. So when I first met Shannon, we met at a park because we were like, obviously we have to get together. And very quickly I learned that her daughter, Delaney is involved in a clinical trial that's going on in our city. And it's a pretty intense clinical trial with the drug Teplizumab and Shannon, that is why I wanted to have Shannon on here today is to tell everybody what it's like to have a kid who's actually involved in a really in-depth clinical trial for type one research. So you already said when Delaney was diagnosed, right? March of 2021. So at what point in time did you guys find out about the clinical trial and how did you find out.

Shannan:

So less than two weeks, I was still not sleeping more than three or four hours a night. And you know, we thank the Lord, walked out of the hospital with the Dexcom and have not had much of a lapse. You know, a couple of malfunctions, maybe user error, but otherwise have not been without. And so even with that, the first, you know, few weeks or so are so overwhelming, you don't really, you know, like several people said podcast, you're in the hospital for 2, 3, 4 days and they're like, okay. here's this life giving medicine. You, her next dose is at about three 30. Can you be home by bed? So we were on spring break the week she was diagnosed. And so, we went through that week, went back to school the next, the following week. And about Wednesday of that following week. So just over a week after diagnosis they called me and it takes a while to get qualified and get all the information. And of course I had talked to my husband and we wanted to shock our family a little bit about it. And then Yeah, you have to start before six weeks post-diagnosis so we had a short turnaround time, like we didn't have, you know, can we pray about it for a month type of a thing? Like we just had to like quickly make some decisions and move forward. So it was wild that's for sure.

Katie:

Yeah. What a Delaney. I mean, obviously she agreed to it, but did you have to talk her into it at all?

Shannan:

So we left her out of it. At first we talked as husband and wife and we kind of tried to, make some decisions ahead of time so that we could just go she's a fairly intelligent child and just go at her with some information that kind of spoke to her love language fully knowing that that. I know I'm biased, but anybody that meets her falls in love with her and so fully knowing that they're going to do the same. And then we're going to have a close relationship with them being that this is you know, 84 week trial. So, we, Jeff and I decided his immediate response was, I don't really see a reason why we would not, even if it's a it's a double blind, so we didn't know if she was going to get the drug or not. And he said, even if she doesn't get the medicine, like, I don't see why we would say no, this is going to eventually help thousands of people, hundreds of thousands of people across the world. My response, because I'm the research junkie was, oh my gosh, I'm going to have doctors and nurses like at my Beck and call, like I know nothing. I, I, I have a wonderful cousin who is a type one and. I mean, she's very honest and open about everything, but I had no idea what went into everything until all of a sudden I had an idea of what went into everything. So, I was just thankful that we were then going to have, you know, so much support over the next little bit. So, but it was, that was wild. Like you have to make a decision really fast.

Katie:

Yeah. That's that would have stressed me out to the max. Which is, which is probably right.

Shannan:

We only have a short timeline to be stressed.

Katie:

Yeah. So now that I'm thinking about it not that I'm jealous, like why didn't they contact me, but I I'm wondering why they didn't contact me. You know what I mean? Like, why don't they contact everybody who is not yet six weeks out? So what, what's the, why did they contact you and not me? Cause we see the same endocrinologist or the same group of endocrinologists.

Shannan:

Yep. So you actually were diagnosed just a little bit too early.

Katie:

Okay.

Shannan:

So if you'd have been just a little bit later, so they were conducting phase three at the time in which Sarah was diagnosed. And so when, once they opened up phase four, which is what we are in it aloud, and then they're just like connected to the hospital. So then it just like flags up like, oh, this person was just recently diagnosed this person, this person, whatever. And you automatically have to have like some levels that like match up to the parameters of the study. And so I don't know if like some of those parameters came back and like flagged her, or I haven't actually ever asked that. I just kind of figured like a weekly list of like, these are the new patients, And that's how they caught me. But literally from that, that first phone call from Joe, the guy who like is clinical guru down at Nemours, he sat a whole bunch of paperwork for the weekend. So like new England journal of medicine studies and articles galore, Jeff and I talked about it. I had a meeting with the lead doctor, Dr. Benson that Tuesday, I had to like, get somebody to cover my class, to like come out and talk to them. And then from that point, we just went ahead and went down to Nemours for some, blood work so that they could do extra blood checks and lots of other like just like check lists. We're just going to check things off the list of like qualified doesn't qualify, qualify, doesn't qualify. Cause it. A process it's you don't just qualify for it because you now have clinical onset of diabetes.

Katie:

Yeah. What was, can you explain to everybody, what was that process like to see if she was a candidate for the study?

Shannan:

sure. So part of the qualification is that you have to have some of the auto antibody markers. So just like if you do like the TrialNet prick, your finger, send it off type of a kit. They did that made sure she had some of the ADI antibody markers, which she did. And then something to do with the C-peptide levels. I'm not gifted in that region, but they had to be in a particular range

Katie:

I forget what the range is, but C peptide is a measure of how much insulin your body is still producing.

Shannan:

right. So she.

Katie:

go ahead.

Shannan:

No. I was just going to say that is what their goal is. So the drug itself is like the purpose of it is to take what your body still is producing and manufacture that. So they had to make sure that you still had enough C-PAP tides remaining. Anyways, so once she did that and that quantified her, then we went ahead and scheduled to begin. So Teplizumab is to if onset has not begun is to delay onset. If you have the auto antibody markers. And if you do have onset that you kind of intercept the T-cells and move them back to what they're supposed to be doing, so, because she had onset hers was, you have to start within the first six weeks of diagnosis because some people fall fast out of honeymoon and other people can kind of linger a little bit. And the point is to linger this a lot longer by way of this drug prohibiting the T-cells to attack and kill all of the Beta Cells.

Katie:

Okay. So the ultimate goal of to close the mob is just to protect and protect the beta cells and preserve their function for as long as possible.

Shannan:

Correct. And phase three showed an efficacy of like, if they had not had onset, it was like 24 to 27 months, I think was like the medium. It was just over two years. And then if they did have onset that they used far less insulin, synthetic insulin, then your dear friends do so one of our first outings was to, what's the jump place?

Katie:

Oh, there's a lot to velocity. Urban air. Oh, well our outing.

Shannan:

Yes. Ours. Yes. And it was funny because. I think we started talking about basles and I was like, well, I'm kind of embarrassed to say this after you told me Sarah's and I was like, no, we're on about two units, maybe three seven ninths, crickets go like, just so little because your body is still producing it. And it fluctuates very quickly. So you do have to pay attention,

Katie:

So we'll jump into the, like the nitty-gritty of what is involved with the trial in a second. But I think when, by the time I had met you, Delaney had already done her first round of infusions

Shannan:

So our first one started like before. I mean, we may have just gone over them one month mark, but it was very close behind that. So once that, that second step of qualifying you have a 12 day infusion of the two-plus. Or placebo, you don't know which one and the very first day you have to go in having taken no insulin, drink this giant milkshake, and you have to see what your buddy does with that, how long it, it peaks. And then how quickly it comes back down. They're taken like vials of blood, like every 15 minutes checking as they're there. She has a pic line in at that point. So, I mean, it's not like they're pricking her arm or whatever each time. It was, was just wild. She that day. And so we could not start and it was horrible. The, the night before I ha I mean, I was so new. I had no idea what I was doing. So like midnight, I had to give a correction and then she was going, I think it's still higher. And you can't be out of range. Like they give you a range, you get me out of range, and then you can't give a correction within like two hours of the test starting. And so I was just a ball of nerves. We went ahead and, and began the test, but. The body did not cooperate. So we still, that, that first day of going to the hospital and everything did not know if we were going to be able to start. So the next day we went back and I was ready for a fight. I wear my shirt that said not today, Satan. And it all went well without a hitch. And then we got started. And so then it was 12 days for them, for the first infusion. So anyways,

Katie:

So, I just want everybody to really understand like what you and Delaney have had to sacrifice to go through this study. So you've mentioned it briefly, but well, first of all, this study is going on during the world of COVID-19. So she had to have like COVID tests, right. To,

Shannan:

well, she's had several.

Katie:

yeah. So to, to rule out that before she started, then she has to get a PICC line, which she want you to describe what a PICC line is for people who don't know.

Shannan:

So a pick line is a very small, thin catheter tube that goes in your arm. I don't even know. the name of the vein, but I'm sure it's like the it's a main artery and it goes into your heart. And it goes like not into her heart, that close to her heart so that the medicine can quickly get into her. And the more effective. And it's also for her benefit because it, that way they don't have to prick her every day. They don't have to get an IV in every. Over for the next 12 days, it's a lot of blood when they tell you when you're signing the papers for consent. I mean, they were like calculating the number of vials and I'm sure they read it in milliliters. And I was like, that sounds like a whole lot. I'm just going to keep signing. Cause I knew like overall it was your blood is going to replenish itself, but they were like, it's a lot. So we're going to do whatever we can to conserve and we're not going to send her for blood draws. You know, hazardly like, We're we're only going to send her if she needs it So anyways.

Katie:

And that was like the day before you went in for the milkshake test that she got the.

Shannan:

Yep. Yep. So the pick line is scheduled for a Sunday and then they went and they wanted to be a Monday so that you can be finished by the following Friday, so that it's a total of 12 days. And.

Katie:

Yeah, but, and she keeps this PICC line in for 12 whole days. So just, I don't want, I'm like, so amazed by her grit. Honestly, I not going to name any names, but I feel like there's some people in my life that would have been

Shannan:

Okay.

Katie:

no,

Shannan:

She is amazing. I obviously, you know, think the world of her since she's my daughter-in-law, but she really does. She, I mean, she wants to be a doctor in the first place. And so she, I love research and I think that she has kind of like research of any kind. And I think she has kind of jumped on board with that. Just over time researching different things and having probably sometimes useless nuggets of information. But she knew the risks and the rewards ahead of time. The first pick line was pretty painful. They, they could not get it. You know, in one spot. And so they have to start over again. And that was tough, but she was tougher the second time. This last time we did it, I said, please, let's go ahead and sign up for the medicine ahead of time. And it was fantastic. It was one of the highlights of my parenting journey because she saw a lot of what was she seeing particles that there were particles that were talking fantastic.

Katie:

That's amazing. You don't I will not share them with anybody and you don't have to show me, but do you have videos of these chats that you had?

Shannan:

Yeah.

Katie:

Of course, any what, what good parents.

Shannan:

to have videos like in procedure rooms and hospitals. Right. I just quietly laid it on the table behind her head and just kept clicking record. So I was actually recording them, doing the procedure. So there's no like laws, I don't think they're broken. If anybody's listening to this and I did break a law, my phone number. What's your number, Katie? No, I'm just kidding. So, but Yeah. it was ha I mean, she saw a person named George. We still don't know who Georgia is. Like the x-ray table kind of like comes over her. The x-ray machine was moving and it was going to dip down and hit us. And she was like, We were just laughing hysterically, the nurses and I, it was fantastic. I knew she was not in pain or any danger, so I was able to laugh, but that second time went really well. And we key, it has to stay covered, has to stay clamped. Like once you leave the hospital it's this whole procedure of like, after everything's done, they flush it with saline, they lock it with heparin. And then they clamped the line. A couple of times I laughed and one of the nurses would text and be like, Hey, I think that it was done. Will you just double check that it's clamped, that it's locked? That's obviously a big deal that, you know, it's not, she's not going to bleed out. So always was they're really good. I love their hearts and like wanting to check and double check and triple check. So it was great.

Katie:

Yeah, I, I think that's amazing. I just have to say, cause I had to look it up. When earlier, when you were talking, the PICC lines are placed through the basilic brachiocephalic or medial cubital vein of the arm. So just FYI.

Shannan:

Well, I can't recall any of that, but I'm super proud to know you.

Katie:

Thanks. I just was like, I have to know this, like I learned this in physical therapy school and I need to go look it up. So I think I said brachial. So I was right. It was one of those choices.

Shannan:

Right.

Katie:

Yes. Okay. Let's see. So we've talked about the pick line. So she goes in for 12 straight days of infusions. And now how long are you guys in the hospital these days? You're not spending the night. I know that, but how long, like from check in to check out, are you seeing.

Shannan:

So each day is a bit of. Timeline plus or minus about an hour around four hours is kind of their goals. So some days they have safety labs and they want to, they're like an hour ahead of time of start so that they can check your liver function. They can measure your C-peptide levels so that they can check white blood count. So one of the side effects is that your white blood count, if you're receiving the Teplizumab can drop. And so to check all of those things and then make sure that, you're still in like a healthy place and nothing, no damage is actually being done. And so some those days would have to be about an hour more. And then once you get the safety labs back, you can practice. And that consists of a very healthy dose of Benadryl and Motrin, and she would do schoolwork. So our teachers both at the first infusion and this infusion on send home, you know, kind of a two week lesson plan of this is what we're doing, where we're going type of a thing. she would work from like seven in the morning till about 10 30 or 11. And then like, you could see, like, she just got this glazed look on her face and she was done. And then she was exhausted for the next, like, you know, four or five hours, depending on, on the day, the first day the medicine or the placebo is, or the infusion, I guess I should say is only, I think at about 25% might be 50. And then it goes to 75 and then a hundred or some sort of configuration it's not in the full dose until day three. And so leading up to that, you, if you're receiving the medicine, you would have a lot of those side effects and maybe nausea or vomiting, or she may develop a rash. And this was all in like the paperwork we received, you know, just shy of 10 or 14 days diagnosed. But we agreed to it and it was fine. So, and she never, she never really had any major effects. She did have some, we are expecting that she did get the medicine, but you don't know until the end of the trial.

Katie:

Well, do you know how many people are in this trial?

Shannan:

I do 321.

Katie:

Wow.

Shannan:

There's a little bit of a debate. The doctors will be able to show you specifically. I say 311 Delaney swears 3 21. So

Katie:

Okay.

Shannan:

of phase four was to get 300 around the country.

Katie:

Yeah. Okay. That's, that's amazing. I mean, when you really do the math, she's one in, I mean, she's just a very rare, you know what I mean? And like, I don't even know what I'm trying to say, but like there's not many people doing this around the country is what I'm trying to say. So

Shannan:

yeah,

Katie:

that's amazing. Three hundred, three hundred and twenty one or 311 either way. That's not a lot of people in the whole United States, so crazy.

Shannan:

so I know. And it's cool. Like I want them to, you know, 10 years from now have like a. Teplizumab reunion of sorts just for the kids and the moms to, and you have to be like a certain age range also. So like for everybody to get together and the moms will probably be like, yeah, we were plum crazy. How could we sign up for this 10 days? Post-diagnosis I still don't know what's happening. I don't know. What do I do with this insulin? I don't know what's happening

Katie:

Yeah, well, that's how they get you because they know you're still in this major brain fog and they're like, Hey, I have, I know it would be fun. Let's

Shannan:

that sounds fun,

Katie:

yeah. Ooh. Yeah, let's do that. That sounds like a good idea.

Shannan:

right?

Katie:

it's, think it's amazing. I mean, honestly, like when you first told me she's in a clinical trial, I'm like, oh, okay, that's fun. But when you really started diving into what that involved in, what she has to go through and what you have to go through, I mean,

Shannan:

Yeah.

Katie:

truly amazing, really. Like, I just think she's so brave and, and so great for even volunteering to be a part of this. And so in the name of T one D research, I thank you very much. And tell us, I want people to know that you were kind of, you were very humble and saying she's smart kid. Delaney is a genius. She is, she's an old soul and she's goofy and silly, but she's also a genius. And I feel like it takes a kid with, I don't know, a deeper understanding of things, a kid who can see the big picture to really agree to something like this, you know? So

Shannan:

I think that we also thank you. I think that we also like when Jeff and I talked about it ahead of time, we were very careful. We already knew that we wanted to. And So we were very careful to. Quote unquote, allow her to say yes, but we kind of guided her into that. Knowing that whether she gets the medicine or not, we have all of these people that are here to help us. I know nothing, daddy knows a little bit. We have great support. Our, both of our families are here. So we, I mean, we did not spend a day without food for over two or three weeks. And my mom came clean to my house. And I mean, just, we, we were so blessed and so fortunate. But we knew we wanted to do this. And so when Jeff and I said, yes, we then approached our families and said, we think we're going to do this. We're going to talk to Delaney. Would you guys be willing to also help because it's a T that's two full weeks and I cannot take off work and he cannot take off work. So that means guys have to come in and help as well. My parents my parents and his parents are both retired. And so at the same rate, now they don't have quote unquote, anything to do. They still have their lives. They still have things that they do. My parents help take care of my sister's kids. And so a couple days a week was out for them with that. And so it was just a lot like talking to everybody and making sure, before we went to Delaney, we had all of the information and said to her, you know, you can say no, I want you to listen to all of the benefits. I want you to realize. The, the bigger picture of this and not focus on yourself. I want you to think of others ahead of yourself and know that we have a great family support. We are not, I say this to everybody. I have some friends at church that have no family here and they're expecting their fourth kid. I don't know how, I mean, we're a great family at church. Like everybody pitches in And come pick her kids up. Somebody else will pick them up. Like one of them is feeling sick. Somebody will go get the other kids, but whoa, would not, I would not do well with that. So people that live so far away from their families, like, I don't know that this would be an option because I mean, I could've called you

Katie:

And you knew I would have helped you

Shannan:

actually. That would have been smart. Why didn't I think of that until right now

Katie:

well, and I should have offered honestly, but I,

Shannan:

you would have had so much fun.

Katie:

would have had a great time. Oh my gosh. I could have brought my microphone, Shannon and I could've just interviewed every single person there.

Shannan:

Live streaming with Katie. Well, Okay. There's another MMT T in April. So COVID stuff has lifted by then and bring this cool microphone and let's go

Katie:

Okay.

Shannan:

the show with Katie Roseboro

Katie:

I know actually Shannon did give me the emails of a few of the doctors who are heavily involved with this particular clinical trial, and I'm gonna reach out and contact them to see if they would want to come talk to me too. So you guys can hear kind of the, medical side of the whole thing as well. Even though I feel like, I feel like we're doing a pretty good job, Shannon of covering the medical side of this

Shannan:

we both do have medical degrees because we have type one children.

Katie:

and that's right. We're basically endocrinologists by default. Yes.

Shannan:

We figured out one time, like how many hours a PhD is, and then how many hours we spend just on type one stuff. Like we have like five PhDs already, right?

Katie:

Oh, yeah.

Shannan:

At least

Katie:

We're real qualified.

Shannan:

Dr. Benson and Joe, to talk to you more about the actual medical side, because I understand that what the drug is supposed to do, but they have such better words. I'm sure to share

Katie:

Yeah. I'll, I'll reach out. You've already told me that they were willing, so they better if they better I'm threatening them now, even though they're not gonna hear this for a long time.

Shannan:

your endocrinologist is one of the co-authors

Katie:

Yeah. Yep. I know. Maybe I need to have her on too.

Shannan:

I think so.

Katie:

just need to sign her up to be like, Hey, can you just come on once a month to talk about something?

Shannan:

Yes. Let's bring in that.

Katie:

yeah. Okay. So. She's in the hospital. She got the PICC line hooked up. She's getting a few infusions, 12 days in a row. So there was a day that Shannon texted me that like Delaney, his blood sugar was dropping was, she just asked me to pray with her that it would come up because if it drops, you're going to have to explain it. Cause I don't know the details. I didn't ask at the time, but if it drops, I was just like, yeah, I'll pray. Sure. But if it dropped you, weren't allowed to treat it right. You weren't allowed to treat the low. Okay.

Shannan:

So that was the MMT T that's the very first day that they're measuring to see if your C peptides obviously hurts. We're working because she had this big, giant milkshake and her blood sugar, like barely went up at all. And when I saw it began to make that curve down, you know, that curve, you talk about the index calm. Like I know it still says straight across, but I see the curve already happening. I just kinda sat there thinking like, oh my word, now it's going to go down. I know how long it's going to take down. And this is a four hour test. She's not going to last that long. And what probably every parent of a type one kiddo knows is that each child is different. And so what your Dexcom reads is not always what is happening. And so I knew that when she starts going low, she's about 20 points lower than whatever Dexcom is. If it's steadily declining, if it's just kind of, if you can see the decline, so she got to 80 and I just sat there and I'm like those four hours, I'm doing nothing, but like closing my eyes and just trying to stay calm because. It's a trial. I'm not involved, it's not mom doing something. And so I knew that she was lower and I just kept watching her for any like outward signs. And finally, we were about an hour, just over an hour left. And like I said, they do blood every 15 minutes and I turned to them as they got the stuff for the blood work, that 15 minute shift. And I said, so she's going to be lower than what you're seeing right now. So does anybody want to make a phone call to make sure that we can still keep going? I want everyone in the room to hear me. I wanted to pull, my teacher thinks about me. Like if I touch your ears, unless then, I don't care. She's in a safe place. I have had the privilege of talking to them. For, you know, at this point, at that 0.8 months, and I had heard stories of other clinical trials and that a clinical trial I guess for like a glucagon and they, they let you go, like they're giving you insulin to get you low, as low as they can. And only until you cannot take it another minute, did they wait another minute and then give you, I know.

Katie:

I can't do that. Is there a clinical trial where we just get to eat like milkshakes and Chick-fil-A and then observe us all to sign up for that one.

Shannan:

I think I'll be there too. So I knew even though every kid is different, you're not going to really pass out until you're like 20. Or maybe below there, there's definitely people who are different and you certainly don't want to have, like, I know both of us have had a low where we're like, don't take me back there.

Katie:

Yeah.

Shannan:

So you definitely don't want to be like, oh, the alarms ringing 50, you'll be fine. not a proponent of that. I don't want you to feel that way. I knew that we were in a hospital, we were at a safe place. It was a controlled environment. And so I just made sure everybody knew. tell whoever. So NIH has kind of like the overseer, I think of everything. And so they were going to call NIH and I said, just tell everybody that mama's still okay. And that everybody has eyes on her and is watching. And she's not, she doesn't have any symptoms, so I'm fine to keep proceeding. So they got an okay. But it would not raise back up and I'm just like, oh God, please. Like the part of the liver. That's up on right at the moment you need it. I was just like, pleased. I text, I finally walked out because I could no longer watch. And I texted probably 20 people and just said, please, right now pray, their liver produces even the tiniest bit of glucagon so that we can rise up a little bit so that she can finish and then start, and this to actually be day one, I was gone for maybe 20 minutes and came back and everybody's shouted 88. And I was like, I was so excited. I've never been so excited for an 88. I mean that, that number one proves that her body is still. Functioning with insulin. I don't want her to stay that low. She was having symptoms, which is why I had to walk out. But I told her my four left. I was still fine. I'm just not going to be here to watch it. And they were like, we got you. It's all right, go get a diet, Coke, whatever you need. And then everything was fine. Came back. She finished. That was about 10 minutes to go. And she was an 88 and I said, we've got at least 20 points

Katie:

so dodged a bullet there with the whole dropping blood sugar. And I know that Delaney recently today's Sunday and Delaney finished up her second round of infusions two days ago on Friday. So, and that is it for the infusions, correct? Hey everybody. It's Katie interrupting for just a second to tell you about the product feature of the week. So our family recently set up and switched over to the DIY loop system. And within about two hours, I realized it was way more important now than ever before for Sarah to stay pretty near her phone. New little things. She gets to carry around called an orange link. Sarah is 10 years old and apparently she's too cool for school. So Fanny packs and spy belts are out. No offense to those wearing Fanny packs and spy belts personally, I think they're fabulous, but Sarah will not wear them. Look, I get it. Whatever man. now she does have her adorable sugar medical bag that she likes to take to school. But when she's at home that gets left in random places around the house, far, far away from her, I really needed something that Sarah was willing to wear that would basically attach her phone and orange link to her body, But was also super comfortable. Sarah is a huge comfort person. She likes soft and stretchable clothing. Don't we all? So I was on the hunt to find just that. Through the suggestion of a good friend. I landed on the Fabletics website with four pairs of they're on the go high-waisted six inch shorts with their signature power hold fabric in my shopping cart, insides, extra, extra small. Um, you guys, these shorts are amazing and Sarah loves them. She has declared that she basically wants to live in them for the rest of her life. First of all, they have. Three that's right. I said three deep pockets, two on each side. And one that is hidden in the waistband at the front, so she can easily carry around her phone and her orange link without me worrying about them, falling out. If you are looking for something similar, you've got to check these out. I will leave a link in the show notes. Plus if you sign up for the Fabletics VIP membership, you can get these shorts for only $12. Seriously, they would cost more than that. If I went to target or bought something off of Amazon and the quality is way better, go check them out again. There's a link in the show notes. Now let's get back to the show and my chat with Shannan. So, and that is it for the infusions, correct?

Shannan:

For the infusions. However, I will say if we finish our 84 weeks and the FDA has put their stamp of approval and say anybody that received it that wants to continue receiving, like, let's say they allow you to do a 12 day infusion. Once a year. I would sign up for hand right now, hand me the papers and I will sign them. Like the benefits just so far outweigh the negative. The downfalls, like there are some, I don't want to act like it was not stressful. I, I asked Jeff a bunch of things preparing for this and, his thoughts when talking about this. The biggest downfall was the scheduling. just knowing that I, you know, I'm watching my kid's blood sugar while she's at a hospital, she's got, you know, people all around her. We kind of had a nickname for her and every day on Facebook and Instagram, we would, know, post an update of like, oh, this is what she got for lunch. And this is what she did. And this is what, how she was feeling. But tomorrow's a day and hopefully it could be better or whatever the update was. And pictures this time around, we wore matching shirts from your store. It was so fun. But just, would do it again simply for the benefits. Like I said, we think that I got off all signs lead to the fact that we got Teplizumab and I cannot say it enough that I think this. Is the drug. That's going to begin flipping the type one world upside down. And that is so exciting. I never wanted to be in this world. I watched her for three or four months. Wondering is this add the matter? Why, why is she like sleeping hours upon end? Why can't she fall asleep? Why this, this, this, and finally one night, like after she's, you know, had a gallon of water five times a day up for the third time. And I just looked at her and I was like, oh my gosh, do you have diabetes? She keeps walking in. I was like, oh my gosh, what am I going to do? Like, I didn't know what to do at that point. And so I was just like, okay, night night, I just like sat on it and prayed about It And, but I knew that that was. the answer. And I think that. That's part of the reason why she may, if she, in fact, got the drug that this, that she's so successful, because that fall, that was a Wednesday, that following Sunday was diagnosis day. So I didn't wait. I, I knew right away what was happening. She just had crossed over the threshold of being in DKA. So we didn't have to stay, you know, and, and pick for a long time. Like it wasn't, it wasn't like we were, and a lot of medical danger. I mean, I realize that's dangerous, but she was in a good ish place. Like it was not dangerous. Like some of the stories that we've all heard. And so absolutely I'd sign up again. Even though it was a lot of work and it's still is like, I mean, there's an app that you have to upload information The trials, 84 weeks. And so I think three or four times you have to wear a study Dexcom. then during that time, about 10, seven days before, and the first three of the study, Dexcom you're loading. What was your blood glucose before breakfast? How much insulin did you take? Did you have any reaction if you had any hypo throughout the whole study, why did you have the hypo? How did you treat it? What was the lowest number? Did you check it with CGM or did you check it with a finger stick or did you do both? Who was there with the child? So like, it's a lot of questions, but most of us have our phone in our hand at all times. And so, I mean, it is a lot of somebody told me the other day though, like you were always looking down at your phone, I'm like, listen, it's not bad. I wish she knew what I was looking down at. So.

Katie:

I know I was at church this morning in our, in our like Sunday school class afterwards, Everybody knows that Sarah has type one, but I definitely had that thought of like, I look like the biggest jerk right now. Like here, like everybody's in a steep discussion and I'm over here, like texting and, and they all knew. They all knew, but it's just like, it's like, you want to wear a sign on your head. That's like, I'm not ignoring you. I'm a really nice person, but my child has type one and I have to be on my phone a lot to monitor their blood sugar and can, you know, converse with her and other people. What have you, so you've said a couple of times that you did not know you do still do not know if Delaney actually got Teplizumab through the infusions, which again, can't know that's how clinical research has done. And, but it's just like, it's just crazy to think about that. But you also feel pretty confident that she did. So tell us why, what have you kind of seen as far as blood sugar while she's been going through.

Shannan:

Yeah. So the first when they first approached us and through. the, those, those first, you know, seven to 10 days of conversation, they obviously went over all of the side effects and the things that, you know, everybody would find scary when reading through the New York or new England journal of medicine as they dial down everything medical. And I just knew that I read side-effects and I, because I'm a. Have a PhD in modernism. I knew that everything has side effects. Benadryl has a side effect. You get a rash from taking Motrin. Like I am just not that mom that I thought that I don't care, but I'm like, oh, I'll put some baking soda on it. I think you'll be all right, come on, drink some water. We'll get better. That's not how that works. Friends. That's not,

Katie:

But you're pretty chill is what you're trying to say. Like you're pretty chilled mom.

Shannan:

I'm very other people would not say that. So anybody listening to this is going to be like, no, I generally am in my head freaking out, but I can keep it cool on the outside. So I'm the one that if you're. Impaled with something I can hold the blood. I'm there with your intestines. And I am good until the paramedics get there, but I am assessing everything in this situation as it's happening. And I will scream and shout and delegate things like you go do this, you go do this, go do this, grab that, do this because somebody has to make the decisions. And I am just finding that decision-maker but I am also because I'm in my head, I knew that this is not just Motrin. If she does receive the drug, it's not just, you know, what does this rash look like? How, when you say she may get a headache do I give her Tylenol for it? Or is Tylenol not going to even come close to it? And so we're not going to do that. So I had, I had a lot of questions written down about that. As far as the side effects go. But when we started, one of the first side effects was headache and she, the very first day was like, I have a headache. How much of A headache? A little bit or a lot. Cause you have to tell them all of these things. And the second day I think I'm a little bit nauseous. She vomited by the end of that night. And then by the third day it was exhaustion, like, I mean, prior to diagnosis exhaustion, and then the blood work came back and we saw that her white count had dropped. And so everybody is like secretly cheering because I mean, that would be a good sign she would be receiving the medicine. Her white count went up later in the over the course of those two weeks and all of the side effects stopped. So I mean, why we think she got it. They will tell us, like I said, at the end. And until then, we're just thankful that I'm using far less insulin. I don't, I don't know how to say this statement nicely to a bunch of people that are like, I don't know. I'm I'm anywhere between 20 and 30 units of Bazell at night. No. No. I'll go ahead and confess it right here. Everybody don't take a drink. You'll spit it out. She is anywhere between like, we're not even really eligible for a pump until just now, when she went through growing spurt, because we don't use the minimum amount of insulin per day. So she's anywhere between three and maybe five during a growth spurt And her carb ratio was like a divided by 40 50. Kind of look at the plate and decide, is that a heavy hitter on glycaemic index? Or, you know, are you eating a bunch of cheese and all of us and four crackers? And then like, I mean, she was at your house one time and didn't you say, like they had popsicles and she was like, Nope, it's low enough. I don't need insulin.

Katie:

Yeah. Yeah, absolutely. Yeah. We hadn't. We busted out. I'm pretty sure they were just, it was just a regular Popsicle. It wasn't like a sugar-free Popsicle or anything. And yeah, I'm over here giving Sarah like three units of insulin for this one Popsicle and Delaney is like, oh, this is the free food for me. I'm like, really?

Shannan:

I tried to tell at the beginning, like, honey, don't say it's a free food. It's not just say don't need to give insulin at this point. But I mean, that's amazing. And I know, like I don't have any other experience. So I know you and I have talked about like, what was quote unquote honeymoon, like, and I've talked to a couple of other people since then. But it just looks very different even from what others have, have, or how others have described their honeymoon. This is just wild. Like we, we have seen some highs, but the highs have generally been in conjunction with like she was scrubbing. She has not started her period yet, but I can see that it will be the last month probably will be the last week of the month. So that week is a little bit disgruntling like I have to, instead of if I'm doing normally one to 50, I got bumped back to maybe one to 35, 1 to 40. But other than that, We're not seeing that the crazy ups and downs that everybody else does. And although I am frustrated with what we do see, and I'm super excited now that we can get a pump. I want one that literally stays between 85 and a hundred all day long. Like even with food, you can spike a little bit more than that. I understand food in general, but I'm also the crazy mom. Who's pricking her own finger, like before meal after meal, so that I can know what I don't have type one or two diabetes. And so what should it look like in a functional, as a functional pancreas

Katie:

right. And that's really where the benefit is, is in the blood sugar, because I mean, who like really, when it comes down to it, like, who cares, how much insulin you're taking? Like, you know, if you take a hundred, if I take a hundred units a day and you take five, then that doesn't really matter. But are you keeping that blood sugar in a good range? Cause that's, what's keeping her healthy and keeping her safe and all that stuff. And yeah. I mean, Shannon has definitely. Some of Delaney is numbers with me. And it's, I mean, it's, I think they have a lot easier time staying in range than probably most of us do. And, and I mean, at this point in time, she's, she's been diagnosed for

Shannan:

eight months.

Katie:

months. Gosh, it seems like longer than that. But

Shannan:

I think when it's type one diabetes, I think you actually add seven years to each year.

Katie:

Yes,

Shannan:

like that. It's a mathematical conundrum.

Katie:

yeah. About that. Yeah. Seven to 10. I definitely lost 10 years of my life. In 2020 between the pandemic and Sarah's diagnosis that's for sure. Okay, so it's a four weeks and you guys, so what's, what's next as far as the study, cause she's not getting any more fusion. So you're just monitoring. You said you have a couple of mixed meal tests. Can you explain what that is?

Shannan:

Yeah. It's like the pregnancy glucose test, basically.

Katie:

Oh, like the milkshake that you described.

Shannan:

yep. So G cannot take any insulin ahead of time, if she gonna have her based on the night before if we were on a pump, we would have to shut it off at a particular time. I believe because we're not there. I didn't ask all those questions, but and then you kind of have food, obviously, water brush your teeth, like just water, swash it, go in and you drink a milkshake and then they monitor your blood every 15 minutes for four hours and check your sugars and all the levels of all the things, which is why you should have the medical people, because that doesn't really tell the audience what it's measuring, but then they measure it. And, and if she can, can stay within a particular range that just shows that she is still functionally making some insulin and that she can. So we have another one and it, I think that somebody told me this last time that that's the best way they measure C peptides. And so she'll have another one in April of 2022 and then the final one in July of 2022. So otherwise we just go in every month for some blood work and they'll check her like just basic height, weight type measurements. And that's that a couple of times we'll have to do like a study Dexcom again. We're in the middle of one now, and then we'll do it one more time. And then, like I said, the app like follow several other things, including any time hypos, but then occasionally following how much insulin she's having. And what are blue blood glucoses at particular times? Before meals and everything. So but other than that, like it's, it's not really that big of a deal. And like I said, my entire reasoning was I just have extra help. Like, that's really the biggest benefit to me as a mom, because every single time they patiently sit and answer my 3000 questions, like, Okay. But I get that she's in range 97% of the time. That's great. I'm in range a hundred percent of the time. Okay. So that's great that you see people who are time and range of like 60%. And that you're super impressed by this, but let's not forget that I'm the zealot and that I want that 100 as, as a basic teacher, that's the goal.

Katie:

Okay. Listen, I want to, I want to, I did not give you this question ahead of time, but I kind of want people to know that you are a teacher. You've already said it a couple of times, but you teach at Delaney school and you also, and I'm not obviously sharing any names, cause that would be against HIPAA, but you have a T one D not Delaney, but in your class this year. So what is it like to be a teacher at your kid school that has type one and then just in general, be a teacher. That's trying to teach, but also helping a kid manage type one.

Shannan:

I would say if I did not have a child who had type one, I might be a little more hyper about everything. My partner, teacher, we team teach, and she is not as comfortable with the kiddo that we have in class. Fluctuating as much as she does, she tends to be high in the mornings. She eats a lot of your favorite breakfast food and stays high. And so by the time she goes to get her lunch insulin she is starting to come down. It's finally kind of subsiding. And then by the time she begins eating, she's going low. So she's sitting all through lunch at 60 and which of course we're not comfortable with. And so we've a lot with times of when she gets the insulin and everything. her parents are great. Like they, they, know, do a great job of managing and they actually do a better job at letting. The disease be the kids that they are there for support, but it has heard disease. And so that has taught me a lot as a mom. Like I think that I keep reminding Delaney, this is yours. I won't sadly be at college when you go away. I can't stand right beside you, you know, 24 7 this is yours. You have to manage this. And so you have to, to know your body, know what you want to eat, how long ago you had insulin, when you know all of these complex things. And they do a great job of teaching this kiddo that I have that. And so. That said she has not Teplizumab. And so her numbers are like the vast majority of people's. And so she's super high for super long. And then she's super low for super long. Like, it won't come up, like come into the school sometimes and you can just see, and I just look at her and I say night was really low. It wasn't, it was like, yes, opposite. Like still has a raging headache, like coming in in the morning. Like, I think it's finally starting to come down. Okay. Donate the cereal. Here's some peanut butter. But it's been wild. It's been a good learning experience for me. It's hard to be a teacher and a mom of a type one. because I am not that child's mom. And so I don't get to make the decisions about. When to correct or what not to correct. And I am very happy to give insulin

Katie:

Um,

Shannan:

the live long day to my kid. That was something that I learned very early on. Not only listening to your podcast, but a couple of others is that as long as you have this beautiful technology hashtag thank you, Dexcom, I can typically see what's happening and the longer I go on, I can know what my kid is really in conjunction with that. How close is it? To like, if I were to do a finger stick. And so I give insulin, like it is water sometimes. Like, well that one 60 won't come down. Go ahead. Whereas I think other people, this kid included don't and. Okay. That's their decision. I'm not knocking that decision, but that's not my decision. That's not how I manage. Delaney. And so it's hard in that aspect because although I respect, I mean, they, this child dropped a note off in my room last year, introduced herself was so polite. Hi, my name is I have type one as well. Please tell Delaney. Here's some of my favorite free snacks. some that are, you know, low carb. The mom sent me this wonderful email, like welcome to the club. Kind of a thing. Like we're here to, to answer any questions. If you have any, it was so nice. Like they're doing a wonderful job. I'm not saying that they're doing something wrong, but everybody has, everybody knows their kid differently. Like, you know, when Sarah's going to fall and when she's not gonna move. cause, you know what you've had, you know, how long you've or how much insulin on board, she has, whatever. And so it's really hard as a teacher and a type one mom,

Katie:

Oh, I bet

Shannan:

thankful for it. I mean, I wish that her teachers kind of had a little more insight, even though I'm sure they're probably like we have enough, you've told us everything.

Katie:

we wish we had less Shannon. No.

Shannan:

Right. Probably. But I mean, just the experience, like, like you said, people don't understand, like when she says, mom, can I have this cupcake? I want to say yes, but I need to know. When was the last time you had food? Insulin? When was the last time you had a correction insulin? What's your sugar now? When is dinner?

Katie:

Are we going, are we going swimming in a minute? Are we yeah, like, did you just get out of the pool? You know, that stuff,

Shannan:

So all of that stuff in it, it's more than just a yes or no. Give one unit for that. It's more than that.

Katie:

You're right. It is. And I think the longer time goes on the the quicker I can move down the decision tree, you know, before I feel like it would have taken me. A long time to figure out, like, is this a yes. Is this a no, if it's a yes. How am I going to give the insulin? Blah, blah, blah. I feel like the decision tree making is getting a lot faster in, maybe it's definitely not automatic yet, but I feel like we're, we're getting there. but yeah, no, you're right. There's a million decisions that go into the question. Hey mom, can I have this cupcake? Yeah. All right. Well, before we wrap up, I know you asked Delaney just a couple of quick questions about her experience with the whole thing. And why don't you read her answer or tell us what you asked her and then read the answers for the listeners.

Shannan:

Yep. I am actually going to let her come in. Cause I told her she give the answers. We practice, she had some tears at one time and I was just like, Lord, I don't think I can let her say any of this,

Katie:

Bless her house.

Shannan:

I know she was, she, as you've shared is thoughtful, really thoughtful about all of this. And so anyways, she's past that point. So that's good. That was yesterday. Today is different. Blood sugars were good last night, so we got some sleep. But I'm going to let her share. I told her to come in. So is there something else that you want to talk about?

Katie:

I don't think so. I feel like we covered it all plus some but oh look, she's got her little squishy. That's so cute.

Shannan:

Yes. Yes. Here. Why don't you sit right here?

Katie:

Hi. She might actually can she, where can she sit where you are?

Shannan:

Yeah.

Katie:

Get up. Get out of the chair, mom. My gosh. Everybody's calm. Everybody's calling me people. I'm busy. Hold on one second. Delaney. Can you hear me? Pretty good.

Shannan:

Yes. Ma'am.

Katie:

Oh, look at you. You're so sweet and respectful. One second. Okay. I did make sure I had to tell people I was busy. Okay. All right. Everybody. Shannon is still in the room, but I told her to get out of the chair and let Delaney take a seat. So I'm here with Delaney and Delaney. Why don't you just tell everybody, what was it like for you going through this study? I know that's a big question, but in your own words, what was it like?

Shannan:

Well, there were times where sort of wanted to turn back and there were times where it was. This hurts too much. Bye-bye but it was also pretty fun. Because I got a lot of stuffed animals and I got to make a bunch of friends out of nurses.

Katie:

Well, and I know at least you say now, and your mom has mentioned a few times that you want to be a doctor one day. So I feel like this kind of gave you like a real life experience of what that might be like.

Shannan:

yes,

Katie:

Do you still want to be a doctor or do you want to be like an artist now?

Shannan:

adopter.

Katie:

Okay. Doctor. Wonderful. So how do you feel you're two days out from your last infusion? How do you feel?

Shannan:

My arm still hurts a little bit from where the PICC line was, but not that much. And I feel good otherwise.

Katie:

Yeah. You go into school tomorrow. Are you excited to get back to a little bit of normal life?

Shannan:

Definitely

Katie:

Yeah, I bet you are. Yeah. Maybe that's what I need to do with Sarah. Just like take her out of school for 12 days and make her sit in the hospital. And then, then she, in fact, maybe I'll do this with all my kids and then they would be excited to get up in the morning and go to. It would put things in

Shannan:

it could backfire,

Katie:

that's true. You're so right. Well, Delaney, what, what advice would you have for any kid or family who's considering being in a research study for type one diabetes?

Shannan:

Ask questions about what happens first, but then remember that you're probably going to be sleeping most of the time. Cause you have Benadryl most times, and that there's still benefits to it for other people. So, Yeah.

Katie:

Yeah. I think you hit the nail on the head. I think that's without research like this, that we would never know. Right. We never be able to make advancements and know things worked or didn't work and. I think it's all for a wonderful cause. Oh, I'm glad I got to talk to you for a second. Is there anything else you want to say?

Shannan:

No, I'm good.

Katie:

Why don't you pass that headset back to your mom?

Shannan:

Oh, perfect.

Katie:

That was great. Thank you for having her come in.

Shannan:

Yes. I think like the biggest takeaway for me is that, Thankfully we were approached about this drug and we said yes. But that's why I want everybody to sign up for a clinical trial. You can do a clinical trial that is not a 12 day infusion. We have a friend that

Katie:

Yeah.

Shannan:

a pump trial. For three short months, we had a friend that just answered questions over the internet, or like an app took, I dunno, I think it was like 60 days. There's so many available. You can go to clinical trials.gov. And if you're specifically interested in obviously endocrine issues there's ways to filter that out, but maybe you're interested in something else. If your family has you know, breast cancer survivors or, or your family has been affected by that, maybe you want to look up those and, and there's lots of things that. People can do. And I want to shout it from the rooftop to just get out there and do it. Just, just offer yourself up as a study candidate. Because I mean, that's why we are here at this point that a hundred years ago, they figured out how to even make insulin. And now we are at this precipice that it could be eradicated in her lifetime, maybe not for her. And that's okay. I don't have hard feelings about that, but if she can have a child one day that already has predisposition to this disease and one little vaccine can help that are prevented. I am here for it. So they have done so many studies about where. The, the root of it comes from like what, where in the line of your body's defense did the T cells decline? And one of those is the Coxsackie virus that almost every child gets, but it's stays with children and something else then offsets those T-cells and make some really angry. And they attack the beta cells, which is why we ended up here. So they're working very hard, taking the Teplizumab studies to make Coxsackie vaccine. That's huge. That's great. How many people whose kids have been to, to preschool one hand foot and mouth disease eradicated. Hello?

Katie:

absolutely. Every preschool teacher has their hand in the air right now,

Shannan:

Yes, they do.

Katie:

Yeah. Coxsackie virus is also known as hand foot and mouth, which actually didn't know that at first I, you know, I had listened to the, a juice box podcast episode on that, a couple of times actually, and, and he kept talking about the Coxsackie virus and I'm like, what the heck is that? So I didn't, I didn't realize that was hand foot and mouth. I didn't.

Shannan:

And so many people are exposed to that or habit. And so just knowing that somebody at some point gave themselves to a study so that a scientist who's way smarter than me, is able to find these things out. And I'm just so thankful, so blessed. So Ask your endocrinologist, if you can be part of any kind of a study ask, go on clinical trials.gov. Just talk, I mean, even talking to your pediatrician, your pediatrician may know a study that is is helpful. And even if it's not with associated with type one, maybe you

Katie:

but.

Shannan:

ditch type one for a minute and do something else. get that right.

Katie:

Yeah, I think that I feel like all of us as parents of type ones, like are, even, even if we don't realize it or not, we're doing something to give back to the type one community in some way, even if that's just reaching out to a member the community who's newly diagnosed and making them feel encouraged and loved and welcomed, like we're all doing something to give back to the type one world in some way. And I, I mean, you do a lot, but this is definitely a huge, a huge thing to give back to, to this disease serve are the people who are, are affected by it. So again, thank you my friend.

Shannan:

Absolutely Absolutely people should check out DRF and TrialNet as well. Like thinking of all the people that have all of these trials all over their websites, they're just, they're just great, great resources. And know everybody is not a research junkie like me, but I also know at the end of the day, I'm just a mom. I thought I wasn't gonna cry. Hold on. I'm just a mom that wants her kid to not go blind. I'm just a mom that doesn't want her kid to have renal disease. At 25 years old, I, I wasn't. That's a heavy burden to bear. And like you, and I say all the time, if we don't laugh, we're going to cry. And so I want to do the very best job that I can and be for me being educated about those things is one of those ways. And so I know that I'm a research junkie, but have so many things on their site that can, can help you. And you can find so many resources to support that

Katie:

Yes, absolutely. Whew girl. He almost had me in tears too. Okay. We, we all, I know we all want that. And my gosh, yes. We all want that for our kids, for sure. What was say JDR at, you already mentioned a couple JDRF TrialNet and then T one D exchange is another one. I get them emails from them all the time. Which I don't think we've actually qualified for anything yet. But we, we do get emails from them all the time. So yeah, if you want to be notified, believe me, there are ways that you can be notified of what clinical trials are out there and available to you.

Shannan:

And everything doesn't have to be as as this. I should also add a small caveat that she, we found this out at the very end that she gets paid for this. she has big plans that probably involve a mouse that lives in Orlando, but think probably Harvard is calling more than the mouse, so we'll see, but could probably spend a day at Disney for it, but they, they compensate you for this. Each one is a little bit different. So all of a sudden. You know, through the 12 days that we and spend at the hospital and then each time we go for blood work and I don't have to go to the quote unquote endocrinologist for my three month checkups because I'm already there.

Katie:

Yeah,

Shannan:

it's cost saving a little bit for me. And again, every trial is

Katie:

no, no.

Shannan:

of them are, you know, are way different. You might you know, never have to go into an office, like I said, but it's super beneficial and I, we didn't know that. And so I'm like signing the papers in the office and start to talk about the payment method. And I was like, lost looking at them. And they're like, you don't know, you get paid for this. I was like, but high five

Katie:

Yes, That's awesome.

Shannan:

sitting there. And she was like, so they start telling you the numbers. And she was like adding it up in her head. And she got to the final cost. Or amount before they got to it. And she said

Katie:

Yeah.

Shannan:

they were just amazed. They were like, girl. you are excited for this study now.

Katie:

yeah,

Shannan:

Yeah. yeah,

Katie:

absolutely. Keep it coming. I love that. Hey, you know what? She deserves every penny that this world has to give her.

Shannan:

Yes,

Katie:

Y'all better pay that more girl extra if you can. Yes. All right. My friend, we're gonna, we're gonna wrap it up because we got stuff to do. Right. You're busy. I'm busy. But I mean, I always,

Shannan:

Hear it.

Katie:

what'd you say,

Shannan:

the big pile of law. I said, laundry is calling me. You see the big pile of laundry at my bed.

Katie:

I know I just did all mine yesterday. I tried to save it all for one day, because that way I don't feel like I'm drowning in it every single day. Which isn't easy when you have two kids that play baseball, because they are like always needing clean baseball stuff. But I mean, I like purposely went out and bought extra baseball pants, just so I didn't have to do laundry every day of the week.

Shannan:

you do what you have to do

Katie:

Yeah.

Shannan:

is the right. I will save it for one day. I generally try to finish it one day, but that did not happen yesterday.

Katie:

Yeah. That's all right. No worries. It's not going anywhere.

Shannan:

No. Well, thank you. Thank you so much for this podcast. I know you said in the beginning that that's, know, how we even got connected, but it was so fantastic in those first few weeks of just drowning in insulin to know that somebody else was drowning and in some with me and you were hilarious. I mean, I cried my eyes out for the first episode, but. Then through the other episodes laughed my head off. And so I love that. And it's so helpful when you're in the midst of all this. I know. we sent texts back and forth of like, Oh my gosh. what is this number? Why is this happening? 10 o'clock at night. Why do I see a straight down arrow?

Katie:

I know. Oh my gosh. I don't know. I'm so grateful for you. I'm grateful for our friendship. I'm grateful that our kids got along because you know, it's not like, just because you have nine year old daughters with type one, they're going to get along, but man, did they get along really well I feel like they're both a little quirky and that really works in their favor when it comes to their friendship. You know what I mean? And I mean, that was all love in my heart. You know, that, you know,

Shannan:

well, yeah, for sure. I was like high five on that. She sure is.

Katie:

they've been,

Shannan:

the

Katie:

yeah, exactly. All right.

Shannan:

good stuff. Well, thank you so much.

Katie:

Yeah, you're so welcome. I will, I I'll see you soon. I'll talk with you soon. I know I'll probably text you later today.

Shannan:

Okay. Bye.

Katie:

Well, that's it for our episode today, I got to say I was getting rather emotional going back and relistening to, and editing that episode. Not only because Shannon is one of my good friends and I'm just so grateful for her and her family, but because it really hit me of just how much they have had to sacrifice to be a part of this study to benefit the greater good. I can say without a doubt that this would have been a hard, no, for us. Sarah can't even handle the thought of trying out a new, yet very similar Lancing device for fingerprints, much less tolerate 12 straight days in the hospital, hooked up to a PICC line and that's okay. I don't feel shame or guilt about that. It's not for everyone. All that to say, I am really so grateful for Shannon and Delaney and her dad, Jeff, and really just their whole family grandparents included for being willing to be a part of something that's difficult and make these kinds of sacrifices. So for me and the rest of the type one community. Thank you. All right. My friends, I'm going to go ahead and sign off for now. I will chat with you next week, but until then stay calm and bolus on by.