garveys
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[00:00:00] Vince: Back to another episode of the Summit's podcast. We are joined today by Heather and Kevin Garvey. Welcome to the studio guys. Morning, morning. Um, before we get rolling here, we had a little conversation prior to just tipping the scales once again, and the Hoosiers favor. She, why you grads? I feel very lonely.

[00:00:38] I feel very lonely. Yeah. That's all right. It's okay. Don't worry. We will bring you into the fam. Yeah. Cancer does not discriminate. It doesn't care where you went to school. Um, so we will we'll get the boilers involved. Don't worry. Finally. Yeah. Um, we talking about breakfast this morning, we said no, no, no, no.

[00:00:59] [00:01:00] And 

[00:01:00] Kevin: children's protein bar solid, solid breakfast. It was delicious. It was like iced oatmeal cookie. 

[00:01:09] Vince: Is that really a protein bar at that 

[00:01:11] Kevin: point? I think there might've been some protein again, just a little bit. Just enough. Just enough 

[00:01:16] Vince: breakfast, dessert. Yeah, that's fine. I like it. Here's like, we're all adults 

[00:01:20] Kevin: here.

[00:01:20] We have, we have dessert for breakfast and 

[00:01:22] Vince: we want that's right. You ever had a chocolate chip cookie and dipped it in your cup of coffee? No. Highly recommend. Maybe not the most nutritious for you. Very good. Um, so, uh, we're going to start a little bit differently. Most of our episodes we've kind of finished with, you know, what's your cancer story, but I think we're going to lead off with that, you know, closer to the front end, but why don't you guys give our viewers some background of who you are, where you're from and we'll go from there.

[00:01:53] Heather: So I am a teacher at pleasant Grove elementary in Greenwood. And I [00:02:00] have taught there since 2003, I started off in special education and did that for four years and moved to fourth grade. And in 2018, I took the instructional coaching position and I've been in that role ever since. And I love it. It's the school is fantastic there, it's definitely a family atmosphere and I wouldn't want to be anywhere else.

[00:02:26] Kevin: Yeah. And I've Heather and I are very, uh, unique, I think in the fact that we both have been in our places of employment for a long period of time. So I currently serve as the chief operating officer for the Indiana bureau of motor vehicles. Um, I have been at the BMV since 2008. Okay. In a variety of different capacities.

[00:02:46] Um, but right now, yeah, I am. I'm in charge of all operations for there. So most folks know. 129 locations across the state. And, uh, we're working really hard to make sure that folks remember that [00:03:00] we're a lot better today than we were a lot of years ago. So can I call you if I needed, like up my ticket spot?

[00:03:06] You absolutely can. Okay, 

[00:03:08] Vince: cool. Does it mean he's ? 

[00:03:12] Kevin: I think it was like 999 once before. So maybe if I get shit 9, 9, 8, my favorite is, you know, I've, I've got friends that have gone in and they're, you know, they'll go into a branch and they're like, you know, is Kevin working today? And it's like, well, I'm not there.

[00:03:25] I'm not at that brain. Um, or they'll ask, you know, do they know me? And, and it's 50, 50, I think, on what they do or the, yeah. Yeah. That's, I'm sure you get some, uh, some, some fun texts from friends. When someone's sitting. Yeah. Most of the time it involves a discount. I usually just say, I don't even get an employee to scan it, so yeah.

[00:03:47] Not able to do the plates 50% 

[00:03:48] off. 

[00:03:50] Vince: No BOGOs. I 

[00:03:51] Kevin: wish I wish, but unfortunately not something you can control. 

[00:03:54] Vince: Yeah. You guys are automating a lot more, 

[00:03:56] Kevin: correct? Yeah, absolutely. I mean, it's, [00:04:00] you know, I think, I think we look at ourselves as a retail operation, not a government entity. Um, and so that, you know, that that's what people are used to, um, just, and, and, you know, the pandemic only enhance that more, you know, more people buying online, more people doing activity online and.

[00:04:18] You know, we've, we've had that capability in the past, but I think as our customers shift in there and other things that they do in their life is really important that we meet that halfway. You know, we, we don't want to just be, well, we're the government and you gotta do, you know, you got to do things the way we need you to do them.

[00:04:37] Um, and so, yeah, we've really tried to do that. Yeah. 

[00:04:41] Vince: Cool. I know a few folks who have, uh, done some products for you guys and it's all coming on the automation side, so it's good to get to see as regular consumers, certainly. Yeah. Um, yeah. I U grads, oh 2 0 3, few years after I departed in 95. Um, I [00:05:00] could, I would have liked to stayed until oh 2 0 3, but I had 

[00:05:03] Kevin: a little more time.

[00:05:03] I like to have stayed out till after oh two and oh three, I think. But yeah. I was already on the five-year plan at OTU. And I think my parents were like, really let's let's get you to stay longer. Yeah. How many degrees and minors are you going to have by the time you get out of there? So it was, it was time.

[00:05:22] Vince: Yeah. I am now role reversal. Ha go in this, into this fall. I have two, uh, my two oldest are twins and they're gonna be seniors in high school. So we're starting that process and, you know, knock on wood. At least one of the two will find themselves in Bloomington, but time will tell. And it's very weird being on this side of the fence as I lose my voice.

[00:05:43] Well, let's, um, let's roll into, you know, kind of the meat of the program. Um, so the garbage now, however you guys want to do this, but, uh, tell us about what your cancer story is. 

[00:05:54] Heather: Uh, so our son Mason was diagnosed in September of [00:06:00] 2018. He was seven years old, um, with stage four embryonal rhabdomyolysis. And we really didn't.

[00:06:10] I mean, we were blindsided obviously. Um, we knew something was wrong. Um, he was having issues going to the restroom and having a lot of pain and, um, you know, we just thought it was kind of a typical, you know, seven year old kid. Oh, he's probably not, you know, I don't know. We just eaten a lot of cheese or something.

[00:06:34] No, he just wasn't able to go to the bathroom. And so, um, when he said it hurt, I wasn't sure what was going on and you know, he's seven. So I don't really, I'm not like monitoring when he's going to the restroom and things like that. So I finally just said, buddy, I gotta, I gotta check it out. Like, let me see what's going on.

[00:06:51] And, um, I found a lump in his like perinatal area and Kevin was out of town. And I remember [00:07:00] like when I found it, Mason, like just jumped out of his skin cause it hurts so bad. And I called Kevin. Freaked out. And I said, I found this lump. I know that's not supposed to be there. And so, you know, after about four different doctors that just misdiagnosed it, they never, um, cancer never came up.

[00:07:19] It wasn't anything to do with cancer. It was all other things. And we finally went, got referred to a GI specialist and he came in the room, said, I, I, I don't know what to do with this. Um, but I have a surgeon here on the floor, let me bring her in. So we're thinking like, oh my gosh, what is this? She comes in and within 30 seconds just kind of steps away.

[00:07:42] And I felt the room just get really heavy. And she didn't, you don't have to say anything and I'm sorry. 

[00:07:51] Kevin: Okay. 

[00:07:53] Heather: She said, we need, he needs an MRI. Immediately. She said, don't leave the hospital. We'll call you when we know what's going [00:08:00] on. What's growing in there. And yeah, we were like, wait, why growing? Oh, well, hold on.

[00:08:04] I mean, we just got to find out what it is, you know, not a big deal. Let's just get him to the MRI. And it was that night that we found out that it was cancer. We didn't know what type of cancer. And, um, they said go home. We were on the north side of Indianapolis and we live on the south side. They said, go home.

[00:08:27] Um, Riley will call you tomorrow morning and get the ball rolling on things. And so I couldn't believe that they were sending us home. I don't know what they w what I expected them to do, but so we went home. Um, I don't think we told Mason that night. I think we just, we had our family there and our pastor came and it was just extremely emotional.

[00:08:47] And so they called at 9:00 AM. The next morning, or actually I think they said they will call at nine. And I think at 9 0 1 when they hadn't called Kevin and I were on the phone. Yeah. I'm trying to figure out what was [00:09:00] going on. And that, that day started our journey. He, we went to Riley, um, man, talk about an experience going to the oncology floor.

[00:09:12] Wow. Um, meeting in a room with an oncologist and talking to her and figuring out what we were going to do. And I just remember her saying there's a treatment because we didn't, we didn't know what to expect. And she said, you know, it's stage four. And I mean, just hearing that, you know, totally freaks you out.

[00:09:34] Um, they biopsied the tumor at that point. They hadn't, they had not. So they just saw from. They just saw from the scan that it was, it was, it was about nine, nine centimeters in his pelvic area. It just basically engulfed his entire pelvis, um, and was just pushing all, everything there out of the way. And that was what was causing obviously the issues he was [00:10:00] having.

[00:10:00] And, um, but the crazy thing is, is like he was playing football. I mean, I have a picture of him like two days before we went to this doctor and he's looks so healthy and he was playing tackle football while he had this nine centimeter mass in his pelvis. And we didn't. And we found out later after imaging, it had spread to his lungs.

[00:10:22] And at that point it had spread to his lymph nodes as well. So, you know, we start our journey of going down this extremely long and hard chemotherapy regimen. And, um, he would be, we started off as inpatient where we had to spend the night. And as we progressed, um, his chemo was really quick. And what we were saying in the hospital for was to get fluids.

[00:10:49] So finally we said, you know, what, can we take him home? And can we hook them up to fluids at home? So Mason hated the hospital. Absolutely hated it. So we thought anything we could do to try to [00:11:00] alleviate him being there and, you know, after they figured out, okay, they, they can take care of it. They're competent enough to go home and make sure everything's okay.

[00:11:08] They allowed us to do that. So for the majority of his treatments, he did outpatient, which we were there still for about 10 hours. Um, because there were certain medicines and things that had to run through the, through the fluid and then we would go home. Um, he had, um, let's see, 33 radiation treatments back to back.

[00:11:31] Um, I mean, you don't take a day off. It's 33 days in a row straight. And so we had to get up every single day. Um, go into, uh, the Simon cancer center. He went behind, um, you know, that huge thick metal door. And I mean, he did it like a champ and we laughed cause Mason was a, uh, a creature of habit. Right. And so they, he could listen to music.

[00:11:58] They didn't have a TV or [00:12:00] anything that they, they, you know, offered to the kids at that point. So they said if he has like a playlist or something, so we went home and made a playlist and it was all. Imagine dragons. And he, so I mean that he didn't get the irony, you know, we could hear it through the door and like radioactive is playing right.

[00:12:19] And I'm like, oh my God. But I mean, they, listen, he did that for 33 days. He was, I mean, star song one. It didn't matter. Like, and we heard took the same amount of time every time. And he listened to the same songs over and over and over, but that just was comfort to him. And, um, when he finished his chemo, he had 10 more radiation treatments specifically to his lungs.

[00:12:44] And we got scans after that and were declared, um, no evidence of disease. And throughout that whole time, I mean, Mason was so incredibly healthy. I mean, I say that lightly, but I mean, he was active. [00:13:00] He played all the sports. He couldn't play tackle football, but he played baseball. He played basketball. He did, he went to school if he could.

[00:13:08] I mean, he was just, he didn't stop. I mean, his camp, his treatments were an inconvenience to him. I mean, he just was like, oh my gosh, I really have to go. He's like, I gotta go. I have stuff to do. You know? And even when he would get a treatment at the hospital, a more light chemo, but then he, there were times he'd leave and we're on our way home.

[00:13:30] What are you talking about, mom? Like, we're going like, no, I got practice. You just got chemotherapy. We're not, no, no. I want to go to practice. So we let him, you know, he, he wanted to do those things and there was one time when we were inpatient and we had been at the hospital for probably. Oh my gosh, like 30 hours or something.

[00:13:51] Yeah. And at least, and we had previously bought tickets to a pacer game, kind of not, I think his treatment got moved a day or [00:14:00] two and it just ended up being that night. And I think we were dismissed from the hospital at five o'clock 

[00:14:06] Kevin: later than that, because we, we left thinking like we were just going to go home and watch it.

[00:14:13] I mean, it was close to probably close to seven. I would 

[00:14:16] Heather: get it. Yeah. It was late. And we'd been there all like forever. And so we get in the end and Mason was, I mean, he wasn't feeling great. I mean, he, cause we thought of initially we're like, okay, we're going to try to go to this game. And when we left, he was, had a ton of pain meds and I'm really loopy.

[00:14:31] And um, you know, we get them to the car and we start driving home. And when he, he knew the turn, I don't know how to bankers life. And he said, he's like, well, where, where are you going? We're going home and he's like, no, we're not. We're going to the pacer game. And we thought we just kind of looked at each other and we thought, you know, what, if he wants to go, let's do it.

[00:14:52] And so we did, we took him and, um, I had all the pain pills in my purse, or, you know, [00:15:00] in the middle of the game, um, you know, giving them all these pain meds and 

[00:15:03] Kevin: I thought we'll stay the first quarter, right? Like that we'll just like will satisfy the itch. And he would not let us leave until the game was over.

[00:15:13] Mason never left a game early. And the whole time he did, we stayed that, that entire and Heather and I are like, we have to be the worst parents. Like we, this king, we have to be the worst parents ever. Like, what are we allowing him to do? But that was just, that was him. That was mace. That was what, what he wanted.

[00:15:34] And he wasn't going to be denied that. 

[00:15:37] Heather: So we were, we were really thankful that we made that decision to, to go ahead and have him do that. And then, so after everything, um, you know, were no evidence of disease. He goes back to school, start second grade, I went back to work. Um, we knew three months scans were coming up and we just, I don't know, we just felt like this weight was lifted.

[00:15:59] I mean, you always [00:16:00] have that, you know, scans are coming up in the back of your head, but I saw his third or his teacher one day. And, um, she came up to me in the hallway and she said, I just feel like I need to tell you this. We, I called the kids to the carpet today to, to listen to me, read a story. And Mason went back to his seat because he said it, it was uncomfortable for him to sit on the ground.

[00:16:27] And so I just. Sank because I knew, because that was also one of the things that we had noticed, like sitting, he was always squirming, you know, and again, like how he's seven and he can't sit still. So we actually got our scans pushed up a little bit. It wasn't even three months because we called the oncologist and told her that, and she said we probably better get them in.

[00:16:52] And that's when we found out that he had relapsed and we were, I mean, I just couldn't believe that [00:17:00] we hadn't even made it three months, you know? Um, so we were devastated and he was gosh, telling him was really hard because he just didn't understand why he said I did all this. Why do I still have to have cancer?

[00:17:17] So that's a really hard thing as a parent to answer, because I don't even know the answer to that. And, um, so this is actually when we were introduced to Dr. After relapse, we were called into a room. They said, we need to talk to you about options. And there was probably five people in this little tiny conference room at Riley.

[00:17:40] And, um, you know, they're going over our options, which we're not. We have, we had a lot of options. They had a, an entire list of chemotherapies that we could try ranging from something that he would be inpatient for five days and be as sick as he has ever been [00:18:00] in his life to more of like an outpatient chemotherapy we'll here.

[00:18:05] He would come and get infusion, be able to go to school. We'll be able to do things. The difference is that they were both 30%. Um, they had a 30% success rate, no matter what they said, you can do the more aggressive or you can do that. But they're still going to probably, you know, research shows, they have 30% success.

[00:18:24] So more aggressive doesn't necessarily mean better outcome. Yes. More effective. Exactly. So, um, and then we were introduced to Dr. Hill and, you know, he was explaining palliative care. And I just knew for us when we, when he started talking, you know, hospice like that enters your mind. And I wanted him to get out of the room.

[00:18:46] I wasn't rude to him. I just, in my head, I thought, why is this guy in this room? Like, I do not need him in here. I, I don't know what 

[00:18:52] Vince: I feel like your brain at that point. I mean, zillion things were probably flying through it a hundred miles an hour, but [00:19:00] were you still focused on, Hey, I know it's only 30%.

[00:19:03] Some people may look at that and say, well, that's not the greatest number, but that's 30%. Oh yeah. We're going after that. And we, for sure want to be part of that 30%. We 

[00:19:13] Kevin: want to talk about that stuff yet. We didn't. I mean, when Mason first got diagnosed, We didn't even ask percentages. Uh, we didn't care 

[00:19:22] Heather: anything.

[00:19:23] I just, I couldn't, we 

[00:19:24] Kevin: really didn't care. We were like, I don't care if it's zero, Mason will be the first. Um, you know, I think that the biggest thing that, that I remember, and I think Heather's hitting on this right now, is that conversation was different the second time. No, um, they were no longer talking about cure.

[00:19:46] They were talking about extension of life and we weren't there. Um, we, we just weren't. Um, and even those percentages, when [00:20:00] they start to talk to you about those 30% are that they'll live two years longer. Um, that isn't, that you're going to cure right. In 30%. And that was the weight of that conversation.

[00:20:14] I just, I remember. That was the first time that we, we really felt like this is, this is different now. Um, and, and it was really about Mason at that point. It was always about Mason. Um, I don't want to say it, it wasn't, but, um, when you start to have that conversation, um, you really start going, how do I make sure that his quality of life remains.

[00:20:45] Is, um, which is 

[00:20:47] Heather: where Dr. Hill's program. That's what they strive to do, but we didn't really want to hear that at that time. Um, it just wasn't, I know they had to introduce us at some point and we've told Dr. [00:21:00] Hilda us, we laugh about it. I mean, obviously we love him now, but, you know, initially it was just, it was really hard to listen to that, but they were huge, huge piece of Mason's relapsed journey because they do provide the pain meds and give you strategies and things to help them feel the best that they can in that situation.

[00:21:24] Kevin: Yeah. So, so after that meeting happens, we, we elected for, um, the lighter chemotherapy that would allow Mason to continue to get treatment. Um, but he could do it outpatient. Okay. Um, and so it was really, we were going month to month at that point. Um, 

[00:21:41] Heather: I would ask about genomics. 

[00:21:44] Kevin: Yeah. So, so Riley, especially in, in, in relapsed situations, um, is they especially sarcoma or soft tissue type cancers.

[00:21:56] Um, they really start to introduce you to [00:22:00] the precision genomics world at that point. Um, and so we had inquired about that, um, while we were starting, uh, chemotherapy again, 

[00:22:12] Heather: um, yeah, have we had his, uh, primary tumor, uh, biopsy, um, and that came back with no evidence of disease. And so we decided since we felt so strongly with the genomics program that we wanted to have him have a thoracotomy and have the tumor in his lung biopsy to see if there was something that they could test to get some type of targeted medicine.

[00:22:42] Kevin: Yeah. So we, um, he goes through those, um, what's really incredible is, um, Mason's known for, um, I think there's this iconic video and iconic picture that is him and [00:23:00] Kenny, more, um, of the Colts running out of the tunnel, um, on game day that the couple of really cool things about that, that moment was, um, that was Mason's birthday.

[00:23:14] Um, that was a birthday present that Kenny had arranged. And, and, and quite honestly, I don't know that any, I've been a Colts fan for a long time. I've never seen that happen before, and I've never seen it happen again. It had to. Kenny mentioned it. And I was like, you're crazy. And like, yeah, we know you want to do the hat.

[00:23:35] Right. Um, I didn't understand the levels of approval that had to get done all the way up to Mr. Ursa. Um, but they all said absolutely. Um, but that Mason had his store academy, like the week before he, him and Kenny ran out. Um, and we didn't even know if Mason was going to be able to do it. Um, but, but he did, he just did it, that [00:24:00] he was not going to be denied.

[00:24:01] Um, but he had that we were able to see then truly get this confirmation that yes, Mason's cancer is back and it is the same type of cancer, embryonal, rhabdomyosarcoma. And so we started the chemotherapy treatment while we awaited the results of that precision genomics testing. Um, and we started to do scans again and we saw.

[00:24:27] I think the stabilization may be the best word to describe it. Um, but it wasn't, it wasn't working like it had worked before. Um, and eventually it got to the point where it was like, yeah, this chemotherapy that you've picked, um, it's not being, it's not doing what it, what we need it to really do. Um, meanwhile chemotherapy, it may not work, but it still has all the [00:25:00] damaging effects.

[00:25:01] That come along with it, whether it works or not works. Um, and so at that point in time, we got the results of the precision genomics testing and there were some good things in there. Um, there were some mutations in Mason's tumor, um, that there were actually challis therapy, trial therapies that were out there phase two trials, phase two.

[00:25:24] Right. So they had actually, yeah, you know, we, we learned so much about, um, phase one phase two phase three, the whole trial piece, um, as we went along in that journey. Um, and, and one of the tests we actually did. So when Mason got, when Mason relapsed, um, we wanted to get a second opinion. And so we went to MD Anderson in Houston, Texas to get a second opinion.

[00:25:48] And we met with a doctor there and they confirmed everything that we were seeing. They also gave us a lot of comfort quite honestly, because they said. Um, everything you did at [00:26:00] Riley is exactly what would have, we would have done had you come here. And that was as a parent, you, you always in this go, am I making the right decision?

[00:26:08] I mean, there is, we both got told, I can't tell you guys how many times there is no wrong decision. Yeah. You tell, you tell a parent that right. The stakes are so high. Um, but that doctor in Houston, the one good thing that he told us was, Hey, you also, there's a, there's a brand new trial being done in Seattle, Washington right now at Seattle children's, um, called car T therapy.

[00:26:35] And he's like, you should get Mason's part as part of genomics testing. You should test to see if you have this protein, if he ha if his tumor has this protein. So we got that done as well. And we actually found that Mason's tumor had, was positive for that protein. So good results in the genomics testing world on lots of fronts, we actually put him on a trial drug.

[00:26:58] Riley 

[00:26:58] Heather: Riley. [00:27:00] He was taking six pills a day, big, I mean, huge pills. That would be hard for me to swallow. They were bright 

[00:27:07] Kevin: yellow. I'll never forget those things. They were two, two 

[00:27:10] Heather: pills at a time for three times a day. And 

[00:27:13] Kevin: yeah, and they, they, they made him so sick. Um, he was right at, he was right on the threshold of like the heavier dose or the lighter dose and in a trial, it is by the numbers.

[00:27:25] And so his weight pushed him into the upper. And so that's what he took and it just made him so sick. Right. 

[00:27:30] Heather: And then as he lost weight, he was still, he had to be on that dosage for a certain amount of time. We went to Riley and said, this is he is sick. I mean, he's falling asleep at school. He can't stay awake.

[00:27:40] He has no energy. He is throwing up he's and they said we can't back it down because we have to keep him at this dose until the point where we reevaluate. And then if his. You know, warrants, then we'll reduce the dose. And that was, it was horrible. It was horrible to [00:28:00] watch him. He was, he was so, so sick. It made him so sick.

[00:28:03] Yeah. 

[00:28:04] Kevin: Meanwhile still playing basketball. Yeah. Um, while we're, you know, while going through this while sick you at 

[00:28:11] Heather: one game, he was running up and down and he came over and threw up in a trashcan and went back and played. I mean, wow, 

[00:28:18] Kevin: that's fun. So he, so we, we do the trial for two months. Um, and we, we see at that point with scans, um, his cancer is becoming very aggressive.

[00:28:32] Um, and I don't think we knew how aggressive, I just think it was like, this thing is starting to really spread, um, tumors getting bigger. Um, and it was at that point, we called Seattle children's and we said, uh, Hey. We, uh, he has tested positive for this, um, protein. Would you be willing to accept him in [00:29:00] the trial?

[00:29:00] We, we knew this was probably our last hope. 

[00:29:04] Heather: Um, I talked to Dr. Carter, um, that was our oncologist at, at Riley. Um, she said after we found out that the, the, I call them the yellow pills on our member. What the name of it was when we found out that wasn't working. I mean, she, she said to us it's okay, it's okay to not, to not do anything anymore, but, and, and has we're having this conversation with her, we hear him outside playing basketball.

[00:29:38] I mean, you just hear the ball thudding on the ground and we're like, what? That's not an option. What do you mean? Like he's literally outside playing basketball and she said, you know, I'll support you guys. If, if you're wanting to. Doing treatment then, you know, Seattle is your next step and we'll do whatever we need to do.

[00:29:56] So of course we said, yeah, right now let's go, let's [00:30:00] do it. And 

[00:30:01] Kevin: started to, we started to work that plan. I mean, logistically it involved two trips there. Um, they had to go to Seattle. Yep. Um, keep in mind that while this is going on, we're now entering a global pandemic. Um, it's April of 2020. And, um, Seattle, as you guys remember was basically ground zero for COVID 19.

[00:30:28] I mean, it was the beginning. Um, and so we have that conversation with, um, our oncologist Mason's oncologist and she's like, I support it a hundred percent. Um, and so we start to make the arrangements. What, what was, what was tough was. Um, it was probably two or three days after we had that call with the doctor, with the oncologist.

[00:30:57] Um, we were getting ready to [00:31:00] go. And, and at that point, I think Mason kind of saw the scale tipped, um, and he lost his ability to walk. Um, Ian that was crushing to, um, him and it was crushing to us. Um, Seattle had a rule that only one parent could go in the hospital. That was the deal. So, um, he and I went to Seattle by ourselves, um, and Heather and, uh, Kinley stayed here.

[00:31:44] And so we flew out there. Um, You know, Mason and I just grinded, you know, we, we got a little Airbnb. Um, it was a one bedroom that had a kitchen and a bathroom. Um, and it was basically [00:32:00] somebody, it was somebody's garage that they had turned into, um, into a house and we just grinded, we got it done. Um, but I, I remember, um, I, I had to call a Heather her and I told her, I said, um, you need to be prepared because Mason's different.

[00:32:29] Um, and when we get back, it's, it's hard to understand. It's hard to see. Um, you know, this is a kid who literally almost overnight went from. Active to not. Um, you know, when we went out there, um, you know, we, he w he had a hard time walking when we came back, he was in a wheelchair permanently in an, [00:33:00] in a week.

[00:33:01] Um, and so we came back and then we waited, um, because the way that the process worked, the trial was car T they take your blood out, they spin it. Um, and they basically keep apart. And then they, they, they genetically modify cells and create this almost like army that basically says, you go and find this protein that existed in Mason's tumor and you attack it.

[00:33:32] Um, and they had to genetically engineer those. And so we waited while they grew in a lab for two weeks. Um, and after two weeks, uh, the four of us got on a plane and we flew to Seattle. Um, and we were there for six weeks. Um, Seattle still had the rule, um, you know, one parent in and so, um, you know, [00:34:00] Mason and I went like, and to carry him, I had to get him in and out of the car.

[00:34:04] I had to get him into the wheelchair out of the wheelchair. Heather just couldn't do that. I mean, mace was, um, it's crazy to think that, you know, we were, we were happy when he was, you know, 70 pounds at nine years old. And our, our seven year old daughter right now is 70 pounds. Like you don't realize, um, how frail he, I had gotten how, how, how small he had gotten.

[00:34:31] Um, and, but we, we just did it, you know, he had to get chemo first when we were there. Cause they had a weak in his immune system so that the cells could do what they did. To do. Um, and Mason was the fourth kid in the United States states and the youngest kid to ever receive that treatment. The first three had to be over 15 years of age for the FDA to approve it for kids.

[00:34:59] Okay. [00:35:00] And so here, you know, here we go. So, um, and I remember him getting the infusion of those car T and, and they come in and they're in the white lab coats. Right. And they, they have a syringe that's, you know, four inches long. Um, and there's 14 million of those cells in a syringe. That's got about two ounces of fluid in it.

[00:35:25] They put it in, um, and then we had to monitor for the next 30 days while we were there. Um, scans, things like that. Um, I think initially we were encouraged, uh, but, but about two weeks in. I think Heather and I knew it wasn't working. Um, but we were committed because at some point you realize the bigger picture here.

[00:35:55] Um, we knew that that [00:36:00] treatment may not save Mesa's life. Um, but we believe in that medicine, we believe where in, in where they're, they're trying to take cancer treatment in the future. And so I think we knew like we have to stay, we have to do this for the bigger picture here. Um, we got to the end of that and they did scans.

[00:36:29] Um, and by that point Mason's cancer was out of control. Um, Primary tumor. When we first started in his pelvis was back to pretty much the size that it was when we began. Um, and his lung nodules were, were huge. Um, 

[00:36:52] Heather: you had fluid, they found out that fluid 

[00:36:54] Kevin: fluid in one of his lungs. And they, they said like, you know, when it was [00:37:00] time, you know, we, it was time for it.

[00:37:01] We knew we had to get home. We had to, we had to get home. But again, I think even in that, it was like, okay, what's next? Um, that was Heather. And I lived in that world. We, we always knew what our name, next plan was. Um, and so we got home and we were ready to attack the next plan, um, and actually had a call scheduled for the F we got home on a Friday and had a call scheduled with oncology, the following Monday to talk through what the next.

[00:37:35] Um, options were, but, um, we realized over that weekend that mace was dying. Uh, and so the call was much different Monday. Um, we actually called palliative care from a pain management standpoint and, uh, um, 

[00:37:58] Heather: we found out his arm, he [00:38:00] had a pulse ox on his finger and we found out that his oxygen was at 85, I think.

[00:38:05] And that, that was when, 

[00:38:08] Kevin: so we call it palliative care and they, they asked the question and I, I will never forget, um, the question they said, do you think Mason is nearing the end of his life? And Heather and I looked at each other and we said, yes. Um, and so they said, all right, well, We're going to start to go through the hospice proceedings.

[00:38:37] And so, um, they came out Monday, they put, um, they put them on oxygen. Um, and then on Tuesday we actually had an in-home visit from Dr. Hill from palliative care. Um, and he did kind of just, uh, an exam on Mason and he brought Heather and I into the room. And, um, he said, [00:39:00] I listened to Mason's heart. Um, but Mason, his heart is now on the right side of his chest.

[00:39:09] The tumors have displaced his heart and moved it. Um, and he said worked we're now in the, um, hours. We're not in, in days and months. Um, and so very quickly he escalates into kind of pain management and comfort. And for us, quite honestly, that was where like the nightmare began. Um, because our experience with hospice was awful.

[00:39:44] Uh, there's no other way to describe it. Um, other than awful. Um, and 

[00:39:50] Heather: the hospice is in the state of Indiana, are all adult focused. They have no, there is no pediatric hospice in [00:40:00] Indiana. Wow. And this is 

[00:40:01] Vince: a separate entity from 

[00:40:04] Kevin: Riley. Yeah. You basically go under the IEU health umbrella at that point. Okay. Um, which, which seemed very odd to us.

[00:40:14] Um, you know, I mean, I, I get it. No one wants to imagine, um, a child passing away from. A life-threatening illness or, or at all right. We don't want to, as a, as parents, it, we never want to, but, but there are kids that are dying every day. Right. Um, and it was stunning to us to learn this first-class facility that we had been all over the country only to go, wow, we ha we have the treatment.

[00:40:48] We got our son, we got it from a world-class facility, 30 minutes, right. In our backyard. Um, but, uh, how, where's the disconnect here? You know, [00:41:00] it really just fell, it fell off for us. And, um, yeah. 

[00:41:05] Vince: Is that, is that something that's nationally or is that just here in Indiana? 

[00:41:10] Kevin: Is that something that it's very, it's actually, that's pretty much what we've learned from our conversations and our advocacy on this.

[00:41:19] I mean, it, it's fairly common. Um, and, and unfortunately it's a numbers game. Um, and, and it's, that's the ugly side of, of a lot of this. I mean, I, you, you guys know this, you, you understand, um, you know, it's like that on the research end, um, which Heather and I are incredibly passionate about how do we change that narrative?

[00:41:42] Um, but it's like that on the, the, the hospice care and to, you know, yeah, it's it, isn't normal quote unquote normal. It isn't natural, but it's happening. And, and, and so we, you know, we, we experienced that. We [00:42:00] experienced the downfalls of that. We experienced the lack of resources, the lack of equipment, you know, there was one point in time where we're.

[00:42:10] You know, Mason had a port, like most, most folks do. Um, that's how he got all of his treatments. Well, because that everything had shifted his port actually wasn't working, but we didn't know that. Um, and so he wasn't actually getting any pain medication at all. Um, and so at one point in time, yeah, during that night we actually asked the PA the nurse, the hospice nurse, you know, we, we actually, one of our dear friends who was there with us during that, all of this, um, is a nurse.

[00:42:42] I said to the, to the hospice nurse, you know, can we do an Ivy? And she's like, I don't, I don't have the, I don't have the equipment to do that. So it's not happening. And, and, you know, you just go that there's, there's something wrong here, right? We're, we're not doing these, we're not doing these [00:43:00] kids for these kids, what we need to do.

[00:43:03] Um, and, and Mason's death was, was hard. You know, he, he was in a lot of pain. He, he really struggled, um, very agitated. Um, and, and so we, we went through one night of that and, um, the next morning we called and just, we had Dr. Hill had actually given us his personal cell phone number. Um, and we were so desperate, we called it.

[00:43:31] Um, and, and he was actually off that day. Um, and, and we've had too many things to say, like, it was just coincidence. There was a reason for why he was off that day, but he came to our house, um, and. Walked in the door and I hugged him and I said, we need you. We need your help. Like, something's not right here.

[00:43:57] And he went upstairs and, [00:44:00] and saw what was going on. And, and the first question I think he said was, where is the nurse? 

[00:44:07] Heather: Um, we were there by ourselves 

[00:44:10] Kevin: and it was, it wasn't as it wasn't as nice. Um, he, he didn't say something else. Yeah. He didn't say it as, and actually he, he got on the phone and called and said, you've got to get people here now.

[00:44:23] Um, and then he did something that I hadn't seen a doctor do the entire time we were there in all of our treatments. Um, I don't mean this as a negative to any of the doctor's date. They do. Were incredible work. Um, but he rolled his sleeves up and he went to work and, um, I've told him, and I've told, I don't want, I don't ever want to get him in trouble, but I'm over, there's a statute of limitations on this kind of stuff.

[00:44:49] But like, I, he, there was probably some things he did that he shouldn't have done. Um, but he, he rolled up his sleeves and there are two images that are, are, are [00:45:00] just burned in my brain from that day. And, and they are both involving him. The first one was, it was him and Heather and I, and we were trying to get Mesa medicine.

[00:45:10] I mean, just as much medicine orally as we could get in him because we knew that Ivy was not working. Um, and we're just in it, in the weeds and, uh, He looks at Heather and he goes, oh my gosh, I'm so sorry. I've got my shoes on in your bed. And we were like, yeah, we're, we're good with that. Um, you know, but, but just the, the moment of like, we, we had, there was nothing, it was like a brief snap out of what we were in.

[00:45:43] Um, and we worked like heck and we did get Mason to a point where he was comfortable. Um, and, and when Mason passed away, uh, his head was actually in Dr. Hill's hands. Um, and that was powerful. It was [00:46:00] powerful for us. It was powerful for Dr. Hill. Um, and you know, I just, you know, we, he salvaged that day, um, for us, but, um, it was very quickly after that.

[00:46:20] About two or three days, I think. You know, Heather and I had talked and, and we had just buried our, our nine-year-old son. Um, but we said something, got it changed. That can't be the way that it is, is for other families. And so the first call that we made was to Dr. Hill, and we said, we want to help you, so that doesn't ever happen to anyone again, what do you need?

[00:46:54] And from then on, it started a conversation. Um, [00:47:00] and we knew that now, Heather, and I mean, we knew when Mason was going through his treatment, we were passionate about the research, right? We had, we had now live that world. We had seen. What, what needed to be done. We had also gotten glimpses into where it was going.

[00:47:17] Um, but we knew now we had two causes. We had two things that we had to advocate for. We had to change and make better for families going forward. Um, and so we've begun to partner with Dr. Hill on how do we improve palliative care and hospice care for kids in the state of Indiana. Yeah. 

[00:47:41] Vince: Good on you guys.

[00:47:43] Um, got a lot of thoughts in my head right now. Uh, one of the questions I have is is there a distinct line between a child who is inpatient and is starting down that path versus a [00:48:00] child who may be a home? So that's good. I guess that's question number one. Is there two different protocols there then too?

[00:48:07] And I think this is what you guys are bringing to the table and I'm probably. That's our potentially getting myself in trouble here, but I think it's people on the outside, like all of us to come up with these creative thinking outside the system and then have a, uh, uh, Dr. Hill or whomever who we can help, I guess, for lack of better term sell on the idea than to try to get back in the system and get the system to change easier said than done as always.

[00:48:38] Um, I guess that's part of the challenge. 

[00:48:42] Heather: Well, I would, I feel like, I guess, I don't know specifically, but if a child in the hospital, I mean, you have everything you need, you have doctors, you have nurses, you have everything. Mason hated the hospital. And we knew he, I mean, we had, we had to have [00:49:00] conversations about what was happening to him.

[00:49:03] Um, but it was never, we knew we, it was never a question. We were never taking him to the hostel. To pass away. I mean, he loved home. He was a home body. He felt comfortable there. That's where he wanted to be. So that was what we wanted to happen. And you know, if kids are in the hospital, those resources are available and you can always have someone, you know, they would have those supplies.

[00:49:28] And I'm not saying that it's not traumatic when a child dies in the hospital. It is. Um, but yeah, at home, I mean, hospice comes and goes. I mean, they came and hooked up his pain pump and they thought it was working. We thought it was wet. And then they left and it's like, oh my God, like, what do you mean you're leaving my, you just hooked my kid up to medicine to how to help him die.

[00:49:54] And you're not going to be with me. And. We had to call them throughout the [00:50:00] night and the, the person that came to our house, multiple, I mean, she came twice, but she did nothing. I mean, I'm not trying to throw anybody under the bus. They just, they didn't, they didn't have what they needed. They didn't, they were over their head.

[00:50:12] And at one point they said, you know, I think you might need to consider taking them to the hospital. And Mason heard and he flipped, you know, screaming. I don't want to get in. We said, that's not 

[00:50:23] Kevin: an option I had to bring, I had to bring the nurse out of the room. And I said, you, that's not an option. Um, and I just know that there, I know that there are parents in the past.

[00:50:38] Um, and there will be parents in the future that will, we'll have to make that call. Right. Of, of where, where is my child going to pass away? And, and to me that shouldn't be, well, am I going to. Treated well over here, or am I going to get treated badly over here? Yeah. [00:51:00] All those things have to be equal. You know, I, there are those basic human rights that, that we all need, you know, we need shelter, we need food, we need water, you know, but, um, what we really learned is that, you know, dying with dignity should be in that category.

[00:51:17] Um, and if you want to do that at home, it can still be done with dignity. Um, so do I think that there's, that line, our experience would say it exists, um, and why, and I think that's where the fire ignites in us to say can't, there can't be that line. Um, but I think to your second question, that's what we're learning right now is this isn't something that can happen overnight.

[00:51:46] You know, I think I called three days after thinking, by the way, By the end of that week, everything was going to be different. And here we are a year later and we've only scratched the surface. [00:52:00] Um, you know, one of the things we talked, we actually talked to Dr. Hill, um, yesterday, cause we thought, oh, I wonder if he could somehow get piped into the podcast.

[00:52:08] Right. And he said, I'd love to, but I'm actually meeting with Riley's new president to talk about the palliative care program this morning. And we were like, that's the meeting you need to be in. Um, because that's where the change can happen. I mean, I, we can tell our story and, and Heather and I have chosen to do that, um, because we feel like there's power in it, but it's grassroots.

[00:52:34] Um, we've never told our story to anyone. We've never told anyone. Pediatric cancer research only gets 4 cents on every dollar. We've never told them that there is no such thing as a pediatric hospice program in the state of Indiana. And people go outraged that needs to change. But here we are, right.

[00:52:56] Still fighting the fight still needing. I mean, [00:53:00] the fund that we have started, that that will, we'd love to talk to you guys about one of the two funds that we've done in in honor of Mason for palliative care. Um, we're looking to, to fund a nurse coordinator position that would basically be somebody who would go into the home and really be that go between between palliative care and hospice to help.

[00:53:23] Um, but we have to fund that position for three years before the hospital will hire for it. 

[00:53:33] Heather: So that's why our goal is big $225,000. We said, what do you need? And he said, if you're talking about. That's what I need. He said, and I said, you know, he said, if you go small, which would still be helpful, he said, we could do trainings or we could buy materials.

[00:53:52] And I was like that. Yeah. 

[00:53:53] Vince: I'm seeing the Mason right now. It's go big or go home. Yeah. 

[00:53:57] Heather: Yeah. I want you to train [00:54:00] P now. I want to, I mean, not that that's bad, but I want, I want this to not happen again. And how, how do we ensure that doing a training doesn't necessarily ensure that, um, or giving somebody a book to read, you know?

[00:54:14] And so we said, if that's what you need and you really feel that this is going to help not have a family and a child go through this again, we got it. We're going to do everything we can to fulfill that goal. 

[00:54:30] Kevin: Yeah. And the other really kind of eyeopening thing that we learned is, yeah. So the it's, it's tough to get those things started too, but, um, Riley's palliative care program is almost exclusively philanthropically funded, um, 

[00:54:48] Heather: which we were gusted by.

[00:54:49] Yeah. I mean, it's not, that's not acceptable in any way. That is such an important program 

[00:54:56] Kevin: in this day and time. Right. We're all trying to figure out [00:55:00] where our dollars are going and how do we make sure that those dollars are protected? And I just think, um, if you know, so many people are faced with that choice of like, do I make this, this philanthropic gift right now?

[00:55:15] Times are tough. Right? People aren't working. Like, there's, there's lots of those. And I'm going, if, if that Phil philanthropy dries up, does this program go away? Then what? I mean, we we've gotta do something different there. Um, you know, I, and, and so that's where, that's where we were like, this is it. This is the start.

[00:55:38] You know, do I, do we have bigger visions? Absolutely. I mean, I think this is, this is a great first step. Um, you know, Dr. Hill has shared a really out there dream of his to say, you know, I would love for there to be almost like a Ronald McDonald house, but a hospice type situation where, where [00:56:00] families do not want to have the hospital experience, but they also have this hesitancy or fear of doing it in the home.

[00:56:07] There is an option for them. Um, you know, there are, I think he said only three of those in the United States for pediatrics, um, hundreds, hundreds for adults. And so you just go, come on, you know, this, those are the things that ignite, I think Heather and I to say, we get, we got to start something. Um, it's been, uh, it's been hugely important for us to have, uh, a close relationship and an ally and Dr.

[00:56:37] Hill on the inside. Um, because we, it's hard for us to get, we're not getting face time with, with ICU health officials and things like that. Um, we've gotten some, but, you know, I think the more we can do, um, the more we can inform people, it's not a question of are people [00:57:00] affected by what we tell them that hunt a hundred times out of a hundred, we are we're effective.

[00:57:07] Um, but we've, you know, we've got to continue to do that, but, but we need, we need that help on the, on the inside to be able to really affect it. And, you know, Dr. Hill has said, once I get this person in, I guarantee you that I can show value in that person and enough that after a three-year period, the hospital will.

[00:57:26] Um, but man, you know, we gotta, we gotta get going on that. Yeah. Um, 

[00:57:32] Vince: I would suspect that you guys have had a few strategy sessions in terms of how did we go about this? How do we kind of get the ball rolling? I've got to, well, unfortunately my, my brain never stops. Um, I typically try to bite off more than I can chew, um, a few things going through my head that I talk about offline.

[00:57:51] I don't want to put them online at this point in time for a lot of reasons. Um, but yeah, I'd be happy to be part of that conversation for sure. Um, [00:58:00] from, from a variety of standpoint. So we'll, we'll talk after this for sure. 

[00:58:05] Heather: So our goal, um, just it wasn't a short term is, and I, I mean, I think we're going to hit it before then, but we, we need to re raise $10,000 by the end of December.

[00:58:14] And we're at a little over 7,000 right now. So we're so close. Um, and because right, the Riley children's foundation who the funds are through, you have to have, um, $10,000 in the fund to, um, for it to kind of be official it to establish it. Yeah. They, we, we were able to raise 20,000 for his other fund. And so since we had done that, they went ahead and let us kind of get the ball rolling on the other one, but they said, Hey, you got till the end of the year, you, you got to have 10,000 there by the end of the year, 

[00:58:47] Vince: to be clear that that 10,000 call it let's call it the initial deposit.

[00:58:51] If you will, to start the fund, that is for the nurse nurse coordinator position of which we need 220 5k to fund 

[00:58:58] Kevin: that. [00:59:00] Really for three years, it funds the salary, the 2 25 funds. That's the salary of that nursing coordinator for three years. And that's really, I U Health's requirement. Um, before they will hire a position, they've got to make sure that the salary is funded for a three-year period, right?

[00:59:18] Vince: Yup. Okay. And then what is the, the second fund? 

[00:59:22] Heather: So his second fund is a cancer research fund. Okay. So it is the MIT Mason fund for RMS research, which is rhabdomyosarcoma. Um, when Mason passed away, um, we were extremely blown away by the amount of donations we received and we had people donate in Mason's name, actually to the Tyler Trent foundation.

[00:59:48] We have become really close. Tony and Kelly, Trent. Yep. And just love that family. And they allowed us to have, yeah, they are, [01:00:00] 

[01:00:00] Kevin: but we still love them 

[01:00:03] Vince: quick little sidebar, not to interrupt. Um, the only I have one article of Purdue in my office and it happens to be a Tyler tramp. Bobblehead. Yep. Wow. Who scare?

[01:00:14] It kind of looks, people say it looks like me. Um, just because of the hair blacker up at the point, but, um, that won't change. Yeah. 

[01:00:22] Heather: So anyway. No, that's okay. Um, so yeah, we got a ton of, um, donations that we were able to donate through Tyler Trent foundation in Mason's name. Um, Kevin had, there's a, uh, company that works for, that does contracts for the BMV that hosted a company, golf outing.

[01:00:42] They donated money. Um, Kenny actually drew a t-shirt a design on a t-shirt that we very grassroots. I mean, I made a Google form and send it out on Facebook and we sold them at the, the center Grove band and football fields and, um, ship them out of our [01:01:00] ship, them out of our house. Um, we, and we were able to give 50% of every shirt to this fund.

[01:01:07] So those made over $5,000 just on the t-shirts pretty good though. Altogether, we had. You know, around like $20,000 that, um, we wanted, we knew we wanted to, to give to Dr. Pollack who is the, who is in charge of the solid tumor lab. Um, and so we set up a call with Riley. We knew we wanted to do the fund. Um, and on this zoom call, Dr.

[01:01:33] Pollock was on there. And, um, Danielle and Megan from, from Riley children's, and we just were asking Dr. Pollock, you know, with this 20,000, you know, what are some things you think you can do and had probably a 15 minute conversation with her. And she actually said at the end, at something in me, just. I don't know, I just had this feeling like Heather asked if she's doing any research specific to rhabdomyosarcoma.[01:02:00] 

[01:02:00] So at the very end, I just said, can I just ask a quick question? I said, do you have anything going specifically to rhabdo? And she said, well, actually we do. She said, we've just got this grant. And you know, we are, we have these samples in the lab. And I knew that we had signed a paper saying that Mason's tumor could be donated to research.

[01:02:23] And then my next question, my next intuition was ask if she has Mason. And I said, would, you know, if you have him and she said, if you give me permission, I can find out in about 30 seconds. And I said, absolutely. And my heart is pounding. And she came back on and she said, was his name? Mason, Cole Garvey. I said, I just put my hand over my mouth.

[01:02:46] And she said, and I said, yeah, she said, we have him. He's one of our samples. And we just. I I've read about it. It was just a moment of disbelief. I could not believe that Mason was in her [01:03:00] lab. I mean, that could have gone anywhere nationally. I mean, we didn't know, we've literally signed a paper that just said, send it help some, you know, if it will help and to find that out, she, she even said, well, I guess we know where your money's going now.

[01:03:15] You know? And so it, it, the money that's raised for that, Mason is specifically a part of the research being done. It's just incredible. And then Tyler Trent's tumor is also in that lab. And so we've had conversations with Tony and Kelly. We just can't believe that our boy who's are in that lab continuing to affect other kids and affect research and, and be a part of it.

[01:03:45] And it's just incredible. 

[01:03:46] Kevin: Yeah. As parents, you can't, I think the conversation we've had with them with. We both say we can't believe that's possible, but then we both know our sons and go, yeah, I think it actually is pretty possible. [01:04:00] Um, you know, they, they just, they were, it it's terrible. We had to lose both of them.

[01:04:09] Right? No, no kid should be lost because of this disease. Um, but they were destined to do bigger things. They were destined to be a part of the story. That was how we change this, how we fix this, how we make sure that other kids don't have to do what they had to do. Um, they were incredible. And, and it's, uh, it's an incredibly humbling thing to get to continue that on.

[01:04:44] You know, I think Tony and Kelly and I think Heather and I. We're honored to do that. Um, we're honored to do that for Tyler. We're honored to do that for Mason because that's, that [01:05:00] was, that's the meaning. That's the why, you know, they're there, we're never going to answer the question. Why mace we can't. Um, but it, his, he gave us a platform, um, and the people that we met and the people that we have become friends with and formed these incredible relationships with it, it, there was reasoning for all of that.

[01:05:29] Vince: We talk about attitude, a lot, talked about it yesterday. Um, I, I think attitudes certainly plays a role here to what you guys are doing now. Um, it'd be very easy to sit back and, and, and just play. Like, why, why did this happen? Why, why Mason? And you certainly have your, your opportunities to do that. And it's certainly justified, but taking it and taking that emotion and turn it into action is, is what this is all about.

[01:05:58] Um, so we're, we're happy that you [01:06:00] guys have come and join us today and share your story with everyone. Yeah. Um, we'll certainly have a conversation after this and talk about how we can, how we can assist with that. Um, real quick on, on the second fund for research, um, I know Dr. Pollack pretty well. She, she is definitely good people.

[01:06:18] Um, is there a goal in mind or is it just continuing to feed and pump 

[01:06:22] Heather: that? I think, yeah, we didn't set a goal for that one. Yeah. Um, because I feel like, I mean, we just, like Kevin said, we really have to. We came out of this, we started with one passion, like research and raising awareness. And, you know, we are, that was what we were all about.

[01:06:40] And then when, um, we had our experience with Mason's passing, you know, something else kind of was brought to the surface. So we have these two goals, but immediately like our immediate need right now is to get that to 25 to dock in Dr. Hill's hands. So we can immediately start [01:07:00] making an impact and make sure that that other families, you know, are taking care of the way they need to be.

[01:07:05] Kevin: Remind me again, what the suit did you see her at? Say around 7,000 right now? Yeah. Okay. So before we leave today, I'm going to write a check to get that to 10,000. So just tell me what's left and we'll before you guys leave today, you'll have it. Thank you. And that's just one. Yeah, we, uh, You know, the, the research part is, is critical, obviously.

[01:07:31] Um, you know, and, but I think, I think we know, um, that I hate to say that one sounds easier. Um, but there's less education that's required in there. You know, um, there really is. We we've got, uh, from the palliative side, we've got to educate folks first. Um, and, and that's, that's where, that's our been our mission, um, in doing that.

[01:07:55] But, you know, we, we had the opportunity to eat lunch with [01:08:00] Dr. Pollock and talk just about kind of the continuing work that they're doing in the lab. Um, and she told us, she said, you know, guys, this is a very, it's a very, it's a very. Philanthropically still funded thing. Um, and she said, I'm sure we'll have this, but she's like, as I sit with you today, I have two researchers in my lab that after the year 2022, I don't know how I'm, we're going to fund them and I'm going that that's 18 months away, um, which will go like that, just like that.

[01:08:34] Um, and so, you know, there, the need is still there. The need is there. And we've been, I think we know, um, that, that there's, there's a lot of work to be done. This will be life's work for Heather and I, um, and we're, we're committed to that because, um, you know, Mason didn't get the full time. Um, [01:09:00] but my goodness, what an impact those nine years that he had on this earth, he had, um, and I said in an interview the other day of Heather and I.

[01:09:10] Have half the impact. We're going to do a lot of big things for sure. 

[01:09:15] Vince: Awesome. Um, anything, well, let's do this. Where could people go or how would you direct them if they wanted to donate and make a contribution to either of these funds? 

[01:09:27] Kevin: So probably the easiest way I think, um, is just going to be to go through Riley children's foundation.

[01:09:34] Um, I'm pretty sure you can search on their website for funds specific. Um, you know, we can definitely give you guys, um, direct links to each one of the funds. Um, we, you know, we did a lot of work on those Heather and I worked closely with them. Um, there's a lot of good information. There's also a lot of good stuff in there about mace, you know, I [01:10:00] think, um, it was a project that we thought, I think initially a this'll take, you know, a day or so.

[01:10:07] And we'll, and it took us over six months. Um, you know, we had to, we had to both be on the same page when it was time to write and that we found was really difficult, but I think you can search for both funds. So, like Heather said, he's got two out there. Um, Juan they're both. I think if you search mighty Mason in there, you're going to be successful in either one.

[01:10:29] Um, but one is the mighty Mason fund for palliative care. And then the other is the mighty Mason fund for RMS research. Okay. 

[01:10:37] Vince: So folks, um, there'll be information in the bio, uh, directing you to this link or that we'll have some other links you want to contact us, contact us@heroesfoundation.org, put mighty Mason in the subject line.

[01:10:49] We will connect you to make sure that, uh, any donations go to the proper place. Um, thank you guys for sharing your story. Yeah. Um, it, they're always powerful. [01:11:00] Absolutely. Anytime. Uh, we look forward to, uh, partnering up and, and seeing how we can help you. 

[01:11:05] Kevin: Yeah, that's great. Let me do too. All 

[01:11:07] Vince: right. Great.

[01:11:08] Thanks everybody for joining us. Make sure you hit that subscribe button and the notification bell. So you can see when further episodes come out and, uh, let's uh, let's get this money. Mason funds, um, funded. .