SPEAKER_03 0:00

Here comes a sun do. Here comes a sunda say it's all right.

SPEAKER_04 0:20

Hello, Fortitude audience. Thank you so much for joining us today. My name is Heather Kittelson, and I am your host sitting with my co-host, Amos Kittelson. Hello. And today in our studio, we have Heather Ericsson with us. Hello. Hello. Thank you for coming in to share your story and just be a part of the Fortitude family. Thank you for having me. You're excited. Your story is we have not spoken about a kid, any any k children who have passed from cancer. And so today I know that this story is going to be near and dear to so many of our listeners because this is a this is a story that to me, this is one of my big, big prayers, right? A mom's prayer. You never want to lose a child.

SPEAKER_01 1:07

Right.

SPEAKER_04 1:08

And there are so many of us that have in this in this world. And so thank you for being vulnerable to share this because it's it is very deep and heavy. Um but Heather, if you could just tell us a little bit of who you are, what you do, your for your family, anything you want to share with us about Heather?

SPEAKER_01 1:25

Well, I am kind of a born teacher, I think. Um I've had many hats, but that's emerged as I think the gift that's been sent me. Um I, you know, enjoy people and have always been very social and and fun and rather maybe goofy. I don't know.

SPEAKER_04 1:45

You are goofy. That's what I love about you.

SPEAKER_01 1:48

But um, we never take life too serious. So, you know, I think that's helped me on my journey too. But yeah, I currently teach um 10th, 11th grade. My family, um, there's Calvin, he's 20, just to be 21. And um, then my son Ethan would have been uh 17, and then Maya is 15, almost 16. Okay. So we uh are very busy, but less busy than we used to be because we're only chasing one child. I was gonna say you have one, right? Right, which is is a big change, but the family dynamic just seems to evolve along with you know your changes, and it's inevitable anyway. They're gonna grow up and leave.

SPEAKER_04 2:33

So yeah, yeah. Um, since I met you, your statement about being just bubbly and goofy.

SPEAKER_03 2:40

Yeah.

SPEAKER_04 2:40

Since I have met you, that is something you are so approachable and so lovely in your demeanor around people. Like you just have this joy that exudes from you, and you relate to kids all the way to older people.

SPEAKER_01 2:52

Oh, thank you for that. That's very kind. It's beautiful. Um, my mom is has was a teacher as well. Okay. And uh, she's 88 and she's very spry, probably in better shape than most of us. But um, you know, she's always taught me um you know how to treat people, and she's just kind of kind and goofy and you know, exudes the Holy Spirit. And so I, you know, am very grateful that I seem to have been a chip off the old off the old block.

SPEAKER_03 3:24

Yeah.

SPEAKER_04 3:26

Yeah. You and you come from how many in your family?

SPEAKER_01 3:29

I have a older brother and older sister, and then I was the youngest by 12 years. So we have a a different family too, because it's kind of a blend of older and and then me and my family.

SPEAKER_04 3:42

So and support. I want to get to that when we start talking about Ethan's story, just from the the family support systems and how friends and family, um, when you're going through that kind of thing. But um thank you for what you do. I always want to say for teachers, thank you, thank you, thank you for speaking into the lives of our our kiddos. It's tough to be a teacher and you're good at it.

SPEAKER_01 4:06

Well, thank you so much. That's again, it's been a blessing. And I just, you know, I take them on all as my kids when I say my kids, because you learn to love them in all their all their different ways.

SPEAKER_04 4:20

Earlier we were talking um before we hit record about you are currently teaching the classroom that would have been Ethan's. So Ethan's classmates, because it's junior, you're sophomore and junior, and how these kids just gravitate towards you in such a beautiful way because it's almost like you're a teacher, but you have this beautiful respect or demand respect as Ethan's mom. Yes. That is a big deal.

SPEAKER_01 4:48

Like it has been very therapeutic for me to have. I mean, you know, you look out and you kind of see Ethan missing, but at the same time, it's like those kids know um every day. Some of them I get my hugs every day, every morning. It's kind of like they just call me their other mom. And one of the students said to me on Ethan's birthday this year, Well, you know, Mrs. Erickson, you lost Ethan, but you gained 27 others. So, you know, they're just very present and and very aware of um that, you know, they they'll say, I've, you know, you've been through a lot, Mrs. Erickson. We know you try.

SPEAKER_03 5:30

Oh.

SPEAKER_01 5:31

And so they recognize that um I'm mad at them in a way for acting, you know, some way, but it's like your kid, like you can only stay mad for about 30 seconds, right?

SPEAKER_03 5:42

Yeah.

SPEAKER_04 5:43

You bring up a beautiful place to go before we even spoke about Ethan. And that is for teachers or for parents or for people who have lost um someone, and you've had so Ethan's class, and then you, and you're in the same room, and sometimes people will say, I don't know what to say. Like, I don't know if I should say anything, if I should talk about them, if I should. And so you're saying that it means the world to you. Like that the class and classmates will bring up Ethan. Yes. Share a little more about that.

SPEAKER_01 6:16

And I think um, I've always been very open to talking about Ethan. And so I think that gives them the comfort of knowing that it's, you know, it's okay. Maybe you get teared up, or we can laugh and that's okay too. And that gives them the comfort of saying something as to, hey, you know, remember when Ethan did this, or and I think they know that it's comforting for me to keep his spirit alive, and they want that too. Like they think about, um, you know, we want they want to help other other people too, or reach out and and not just me. So it's it's nice that his spirit works through the room, through all of them. And I see a lot of empathy and and kindness in their eyes. And I think they're very willing to open up to whatever it is we're talking about with Ethan. And it maybe has helped them heal too.

SPEAKER_03 7:11

Mm-hmm.

SPEAKER_04 7:13

It the comfort that you bring them through their own sorrow, because maybe they didn't have someone around them that they could express that. So, like you're just this extra level of it's okay to not be okay. It's okay not to miss Ethan. Yes. Oh, that's really beautiful.

SPEAKER_01 7:28

And to keep his, you know, love of sports, or we'll talk about, you know, Ryan will remember when Ethan did this in baseball, or yeah, you know, and so I think it makes them feel too like he's still he's still there, he's still, you know, he's still with them, even if he's not on the basketball court. Yeah. Like with football, they all wore like their um team Ethan bands, and um, they want to have that game in memory of him, which they do have done every fall since since he passed since he passed. Yeah. And and I don't ask that of anyone. You know, it's like you just show up and they're like, hey, we're doing, we're gonna do Ethan's game next week. We're gonna, you know, have the and I mean I know they're doing it in honor of cancer too, yeah. But they very much want it to be his story too.

SPEAKER_04 8:23

They um in talking about Ethan and before even I I don't think I ever had the opportunity to meet Ethan. Like when I was thinking back to all of that because we we didn't we weren't that close in that that I'd so not knowing how to approach a situation when you're not close with someone, but I I remember hearing all the conversations, even from our kids and different people, just about how beautiful Ethan his spirit was and is, and how just kind he was always thinking of others and had this just beautiful um presence about him. And that's I heard that all the time when he when you guys were going through all the battle. And again, that's your grandma or your mom.

SPEAKER_01 9:04

My mom, and then my grandma as well. Yeah.

SPEAKER_04 9:07

I mean, just generational joy that you guys have exuded.

SPEAKER_01 9:11

I I love that. That that makes my heart happy. Yeah. I think that's exactly I mean, and and my other children are too, but he just had this um almost like a like a predestined gift from from God that just made him who he was so we could bask in who he was while he was here.

SPEAKER_00 9:33

How old was he when he passed?

SPEAKER_01 9:35

12. He was a month away almost exactly from his 13th birthday, which we really hoped he had. He could get there.

SPEAKER_04 9:42

But let's go there. Okay. 2019 was when you got the news. Mm-hmm. So if you can you walk us through a little bit of what your journey has been like or what it what you went through.

SPEAKER_01 9:54

Right. Well, we thought um Ethan did not enjoy school. He loved going to school, but he hated the learning part of school, like recess and being outside and gym, of course. Yeah. So he uh had a flu, which we thought was a flu. And then uh he and my son Kelvin were wrestling on the floor, and he ended up getting a concussion. So he was out for a couple weeks because he couldn't get rid of his headache. And so he had this kind of combined out of school for for two, three weeks, and um, it was able to get him out of the MCAs. So he was super happy about that. Anyway, any kid would be. And so that was like the bright side, but then um we took him in again because he just was still feeling dizzy and had a stomachache. And um, so our pediatrician said, you know what, I think it's time we send him to the castle, um, to the children's hospital, and let's um let's get an MRI or you know, see maybe there's something else going on. And so that's when it was a Friday, and I'm you know, you're like up against the clock. So we get sent over and it was like five o'clock, and then they had a uh surgeon on call that came up from I think, I don't know, a couple hours away. Anyway, he did have a tumor and they wanted to get it out immediately. Where was it located? It was right kind of in his abdominal wall, um, right below his uh small intestine. Okay. Kind of, and it was kind of wrapping, wrapping around. So which was causing him to vomit and things like that. He wasn't able to start passing things through. So, and then we waited, they sent it to biopsy, and so it was like that Monday after surgery. We waited the weekend, and um when the surgeon and one of the oncology um doctors came in and explained that it was called Burkett's lymphoma, and it's very common in boys his age. Usually, I mean, not all boys, but yeah, it's more common, and it's it, you know, they said it's very curable, it's just a very um one of the fastest growing uh types of cancer. So we have to, you know, get in there right away and start chemo, and so it was very overwhelming trying to understand the disease, and then immediately, you know, like later that afternoon, he was already on starting his first round of chemo, so it was just kind of like a blur.

unknown 12:33

Yeah.

SPEAKER_03 12:33

That afternoon.

SPEAKER_01 12:34

Mm-hmm. Later that day, because they said with Burkett's lymphoma, whatever's there, the cells can double in 24 hours. So it's it's it like I said, it it equally is um responsive to treatment the other way quickly, but if you don't stop it where it is, it can, you know, end up everywhere quickly. So how did you all process that so fast? You know, I remember Aaron, my husband being at work and um me, you know, they put him on speakerphone because I wanted to, I mean, I wanted to know, I didn't want to wait. And so then he went to school and got um my Ethan's siblings, Colin and Maya, out of school. And so in the meantime, you know, you're kind of walking in a fog almost, like you're in just your body takes over and and your adrenaline rush is like, well, now we need, you know, you go into okay, what do we need to do? Let's fix this, let's get it done, let's get this out of there. Go mode. Right. Which, you know, I think that emerged as one of the hard things for me. Like looking back, you're like, why wasn't I more present to Ethan? You know, we were so busy like asking questions and you know, looking up stuff and you know, less present to what he was going through.

SPEAKER_04 14:00

Ooh, that brings up a really good point. If there's a father and a mother both present in those moments, maybe you divvy up those responsibilities and say one party to go take care of all the stuff, stuff, and the other person go be with the child.

SPEAKER_01 14:17

Right. Yeah. And I think I wouldn't think about that. You know, we learned we learned from that in that moment, like, you know, from now on, it's not about us, you know, it's not it's about him and seeing where he's at and then becoming somebody else to, you know, you do you, you take care of whatever it is, and that's okay.

SPEAKER_03 14:37

Yeah.

SPEAKER_01 14:38

But somebody has to be with Ethan. And and and he was very responsive to you know, be like, well, it is what it is, but yeah, you don't look, you don't forget that moment when your child looks at you and says, Am I gonna die? What does that mean? You know, and of course, as a parent, you're like, No. And the surgeon was there too. I mean, they say, you know, no, this is a very treatable disease. We're, you know, we're gonna you have removed your tumor and we're gonna do what we need to do. And make sure it stays away. And it was very effective. Um, he had some problems with his actual tumor, which I'm sure was a result of having chemo right away, and he had a strange infection in there. So he had more problems almost with his incision and than he did like the effects from chemo.

SPEAKER_04 15:32

Okay.

SPEAKER_01 15:33

But um the regimen that they use is is a very strong combination. So, you know, it's not, it's not an easy road to to watch them go through and to be so sick.

SPEAKER_04 15:45

Well, and they're doing the chemo, which doesn't that kind of kill off your immune system, which is trying to fight that wound and it's exactly it.

SPEAKER_01 15:53

So it's it's like the chemo causes side effects or, you know, in this case is infection. And it's it's kind of like this rampant circle of of fighting one thing, but then you're starting to deal with all the other things too.

SPEAKER_04 16:08

Was he in so he got diagnosed and he was in did you have to stay in the hospital from that point on pretty much?

SPEAKER_01 16:14

Right. Well, he was in, I want to say probably three, four weeks because um he did end up having, like I said, that infection. And then we would go home and he'd have his um two or three times a week, they do blood work and things like that. So he got used to, well, this is what I have to do. And so he'd bring along his iPad and headphones and and kind of just go into his own space. And then when we left, he was like the good old Ethan again. So, well, okay, I'm done with that, we're going home. And um, so he had two rounds of chemo, and then the third one um in between, they did a scan and it showed that there wasn't any cancer cells anywhere. So, you know, it was a big win, a celebration. And my mom was there. I remember, you know, we were all, ooh, and yeah, I mean, it's just like a load off your heart. So at that time, then the big decision was um, do we go forward and do another full like second set of I think it was a it would have been like two or three more rounds after that of chemo, even though they cleared him. But this is like a precautionary just in case right, just in case there was some cells lying there or hiding in there.

SPEAKER_00 17:33

So do you have to get 100% of the cells? Do you have to get them all?

SPEAKER_01 17:37

No, that that was their goal with with Burkett's, and you know, I mean, there's always things lurking somewhere, but nothing that that showed up in his CT scan. Okay. So, um, but then they watch him super close, you know, for anything in the blood work because immediately then that would send off signals. So we were just going into summer then. And um, you know, we we asked Ethan, and he had been he had been so sick from, like I said, a lot of it was just his trying to heal from that wound too, but knowing that he would get these horrible, you know, mouth mouth sores and you know, the vomiting and just all of that and blood transfusions. So, you know, we you just you pray on it and you you ask, you know, well, we we asked Ethan, well, this, you know, what do you think? And we asked the doctors and everybody seemed, you know, very positive about it. And so you just went about your business and um summer, he had his 30-day scan, that was clean, and we had a great summer. You know, he was outside playing in the backyard, playing baseball and doing the stuff he did, spent time at my mom's cabin, and um was he was actually kind of excited to go back to school. Um, and I was a paraprofessional within his class that year, so I was kind of grateful to have an eye on him. And um, then about three weeks into school, and he had started football, so he was in sixth grade football wearing the full uh the whole full gear and helmet and everything, and we would just kind of chuckle because he was tiny anyway. But then after his treatments, you know, he had lost quite a bit of weight, so he just looked like this yeah, like a third grader.

SPEAKER_04 19:39

And he so diagnosed in fifth. He's on a mission, right?

SPEAKER_01 19:44

And he's starting his sixth grade year, sixth grade year, okay, and then about three weeks in, ironically, it was the same exact day that we broke um ground on building our new house um out in the country. So um we were kind of you know looking forward to that and absorbed in that, and I knew he wasn't feeling well, and I think it's more of a denial thing of you know, could this be back? But then, you know, he's at school and his immunity is still compromised, and his sister had been sick, so I kind of thought, well, Maya has been sick, he probably was too. Um, but then I took him into his pediatrician and they're like, nope, we should go send you right over to oncology. And um, and it had s come back and spread um in more of his bladder area and in his chest cavity. So he had several small tumors everywhere. And then um by that next, I mean it moved so fast, uh, boom, we right back in, started chemo, but by that next day, um they ended up having he couldn't he wasn't, you know, going into the bathroom. And so it was growing quick enough where it was causing he needed to have stints put in between his kidneys and his um bladder because it wasn't processing things, and the next thing you know, we were in the ICU, and uh two days later he was intubated and was intubated for maybe two, three more weeks, and then um it started shutting until he could get ahead of the cancer, which it did start shrinking things almost immediately. But then you deal with like all the excessive like fluids and the cancer breaking down, which was causing and his kidneys weren't working right because it was putting that pressure on there. So I think the hardest part was his dialysis, which he was on for every day for I don't know, two or three weeks, maybe. And then kind of went down from there. And as his cancer shrunk, then things all started working again. And um, but we were in the ICU for almost a Month. It was like three and a half weeks. I remember that. Yeah. So that that was that was definitely the toughest part of the journey. And you know, he was so sick so quick that, you know, you I really didn't know if he would survive that just because of all the things that were shutting down and you know, the uncertainties.

SPEAKER_00 22:20

And then um and ICUs are noisy.

SPEAKER_01 22:24

They are very noisy.

SPEAKER_00 22:25

As you're as you're just you're trying to rest, and everything's beeping and whirring. And it's like scary, it's a scary place. How can anyone sleep and rest in that environment? You're constantly getting constantly getting woke up.

SPEAKER_01 22:38

Yep.

SPEAKER_00 22:38

So on top of everything, the ICU is as necessary as this layer of complexity.

SPEAKER_01 22:44

Yeah. Oh, for sure. You yeah, that's and you are so exhausted that you know you're just trying to function. And and yeah, and the you know, it's funny how you're um, you know, I think that's when I think I said to somebody, I don't know, one of our family members that was there, and I'm like, you know, they're like, How are you doing new? Like, how do you function? Like, you know, you're like on an adrenaline rush, and you're, you know, you're press every time Ethan would stir or move or try to, you know, he'd kind of get, I'm sure, like you said, all the beepers constantly going off, and then it's dialysis, and they had to put in two different ports because then the one didn't work. And we had it, you know, it's it's a scary thing, but I'm like, well, that's when you say, you know, it's like the hand of God just scoops you up and and uh holds you and just keeps you right on to moving because you know that's the only the only thing that makes any sense.

SPEAKER_04 23:50

It's the one place you would draw all your strength from. Absolutely, yeah. You you were in the hospital for quite a while. How were things with your with Maya and with Calvin?

SPEAKER_01 24:04

Calvin, yeah. Um, well, my mom came and stayed with us, and so she kind of just became a permanent fixture. And then um we lived in in town, then in a smaller town. And so our neighbors and friends, you know, just picked up and took over, you know, giving rides, going to practices, and um in my mom and uh people would bring our meals, you know, so she really didn't have to cook that much. And um, you know, they kind of just we made sure one of us was we were lucky enough to be within, you know, 20, 30 miles. So one of us was home almost every night. That's good. So by the end of the night, I mean it wasn't normal by any means, but at least, you know, we'd try to do normal, you know, make sure their homework was done and and yeah, be there at bedtime.

SPEAKER_00 24:56

That's right. That life doesn't stop. No, no, that was that was going that's hard enough by itself. We know this.

SPEAKER_01 25:02

Yeah, oh yeah.

SPEAKER_04 25:03

I mean, you know, when you have you had to pick and choose, you know, who's gonna go to what what event or you know what parents gonna go there, but you know and it makes you're emotionally, like emotionally available, whoever's watching, because there's they're I mean, your other two kids are going through so much emotion, right? Especially with how close in age your youngest and Ethan were.

SPEAKER_01 25:26

Right. Maya and Ethan were buds, yeah, yeah. And and then just the worry of, you know, even though school and you know, everyone has their eyes on them, you know, they're she's 10 years old. How is she, you know, what is that like to process that? And I know they were, you know, they're very afraid. And for Maya, she wanted to be with Kelvin or be with Ethan. And and Kelvin was more of it, was so hard for him to be at a hospital and watch that where he was more present when Ethan was home, of you know, we're here, we're normal now. We're going to the hospital is just like a shock of whoa, this is real, it's happening. And nobody likes to be in a hospital. And oh, go ahead.

SPEAKER_00 26:12

What was the most impactful thing that the small town did during this time?

SPEAKER_01 26:19

Well, I think there were several, but um just the random spur of the moment uh prayer vigils, they would, you know, get people together and and show up down at the local park. And um, you know, we would go if you know, if one of us was available and take the kids. And I think um just it seemed like whenever, you know, I wasn't working, so it was like whenever there was, you know, more of a need for, well, okay, we have, you know, this bill coming in, or you know, something to that effect. It was like the community would show up and and say, Hey, we did uh this huge fundraiser, here's this check, or you know, like kids selling pumpkins, and it was just a constant, like all these different ideas and just the meals and and prayers and constant um, you know, like I said, not just taking care of of us or Ethan, but just keeping their eyes on, you know, wrapping Maya and Kelvin, where that's where we just, you know, as much as you wanted to, you didn't have the availability to. Yeah. So, um, but so many times just faith and you know, finance, all of that, our needs are being met. And one of our nurses said, I've never seen a community come up with the things and do the things and the prayer vigils. And, you know, she said it it's exceptional and it's unique, and you guys are so blessed to have that. So very much so. And Ethan knew that too. He was very um awkward about it, just because he did not like being the spotlight and very much wanted to just fly under the radar and then emerge. Hey, I'm here, I'm home, I'm gonna be out in the yard now. Yeah, you know, for him, normalcy was so important. So sometimes I would get frustrated, like, well, can't you just, you know, we had they had the our town had a big celebration and games and all these different things. And Ethan was like, No, I don't want to go down there because he doesn't want to be the focal point. And then I was like, wait a minute, okay, this isn't about um, we aren't gonna worry about what other people see, it's what he needs from us, and sometimes that was really hard to remember. Yeah, it's like, oh yeah, that's right. It's not, it's not, you know, we're like, oh, well, we need to show people our gratitude, and and and then after a while it's like, why people know we are.

SPEAKER_00 28:57

Yeah, you know, he doesn't Ethan doesn't have to be, he did go down and have fun with his friends, but that's probably good, that's good to know because really like our small town, 750 in town and maybe 900 or a thousand in the community. Um that you give but you give like duty-free, tax-free. Right. Right. There's not an obligation to reciprocate with the thanks. It's like you give it a true gift, is just is a gift. Is a gift.

SPEAKER_02 29:29

Right.

SPEAKER_00 29:31

And you don't want to add on to someone's already complex life and make them feel like they need to show up. So that's that's something that people listening to this podcast can, if they're going through that, just just express that. Like we don't you don't owe us a showing. Like go do your thing.

SPEAKER_01 29:48

I think that's our human nature is oh, we need to reciprocate. You know, we need to to express what we we we feel for that, you know. Like, oh, it's bad not to send a thank you.

SPEAKER_00 30:00

Well, you know, uh you probably don't feel like sitting down and writing thank you notes.

SPEAKER_01 30:05

The time and energy afterwards. In fact, after he passed, I just try I I gave up. I'm like, I I don't I don't have it, you just don't have it in you, and you don't have the time. I mean, taking care of a sick child even in the hospital is a 24-hour job.

SPEAKER_04 30:23

I would phrase it differently of the giving up versus you just put a really good boundary up for yourself and what you can and can't do.

SPEAKER_01 30:32

That's that's a really good point.

SPEAKER_04 30:33

Because that you did not give up. You're there's only so much we can handle. Right. And in order for you to look out for you or even for the remainder of your I mean, it's like your every day was consumed. And so now it's like, oh, I just need to, I need to take a breath. Just be. Yeah. And so anyone who's expecting thank you cards from those who have lost people, yes, I would say probably move on and just know that they're grateful, right? Absolutely. Because it's not, it's not about them, really.

SPEAKER_01 31:03

It's about and that's one of the greatest lessons I think that we personally have learned is you know, it's it's just to be, to be present, and that's enough in that moment, you know, because everybody's experiences things different, you know. Some people enjoy having, you know, that surrounding feeling of, you know, people being here and need that. Where Ethan was just like, hmm, I'm good just being here. And I have, you know, my family here and you know, some of my friends, and I'm I'm just good just how I am. Just kind of, you know, not that he wasn't grateful. He was extremely grateful. He just didn't in his 11, 12-year-old mind know how to process that.

SPEAKER_04 31:52

That's a lot for any kid. I think about the age, and we have one. Right. That age. And I mean, even just talking through why do we, why do you do this or why do you do that? Instead, you're processing, am I gonna live or am I gonna die? Right. Like that's not that's not.

SPEAKER_01 32:07

Unless we've I can't imagine what his little mind was thinking, or you know, you wish you did. But one time I did say to him, Oh, Ethan, I'm so sorry. I wish I could switch places with you. And he said, No, you don't. Why would you ever think that? He said, I wouldn't want you to be, you know, going through all of this because you have other people to take care of. So, you know, just his ability to think it's more than just me. You know, it's it's all of us.

SPEAKER_00 32:38

We underestimate kids' abilities to process things like this. And I think it's and our our empathy just gets cranked way up for them. And yes, they're going through things. Um historically, 12-year-olds were going through getting close to marriage, you know, like entering into a lifelong relationship.

SPEAKER_04 32:58

Prairie days. Yes.

SPEAKER_00 32:59

Right. And so we have the capability of doing that. We forget how capable they are. They're still growing, the prefrontal cortex grows until you're like 24 years old or something like that. We could get that. Um But yeah, I can just understand how the the heart just starts to get twisted and turned and squeezed, and it impacts how you treat them. How would you respond to anyone who's going going through that right now?

SPEAKER_01 33:28

Well, I think the most important thing is just to um try to keep you know communication open. So you're trying to weed out how they are really feeling. And more than that, what do they need from you? You know, and maybe it is, I don't want my friends here. Not well, why not? You know, why don't you want people here? Well, I don't really want my friends here because it's hard for me because then it's a mirror of I want to be playing basketball right now. I want to go to school and do normal things and I can't. So that that's a reminder of the I'm not normal. Where when I'm just at the hospital and I can get on and play video games with them because we can hook up that way, then it's just like I'm at home in my living room doing my normal day, you know, playing like we normally would. So, and you know, for for other things, you assume that you know what would bring them comfort, and it's a lot of times it's the exact opposite.

unknown 34:31

Yeah.

SPEAKER_01 34:32

So to ask the questions. Ask the questions, and it and that's you know, you can do it in a loving way, but then also to learn to be careful of, you know, to not question why it just is, and then that's how they want it. And eventually, you know, things come out and and um and everyone's different, so you can't say, well, this is what you do when you uh are 12 and have cancer, or you know, in his um you're going through that with a whole floor of people of all from infants all the way up. And for him, too, it was about recognizing how for that four-year-old or three-year-old, how horrible that must be because they don't understand. You know, they can't be told by a doctor, okay, this is what's gonna happen, this is why you're vomiting, this is why, you know, you don't feel like getting up where they don't understand that. Yeah, yeah. And a lot of people who didn't have support, that would really bother Ethan. Like if a kid was, you know, had didn't have a parent, but because they had to work. So then he'd say, When I feel better, if I feel better tomorrow, I'm gonna go play with them. You know, so it was more about, hey, I might have it bad, but and that wasn't just him, it it just seemed like the perspective of going through this life-changing event. Yeah, either, you know, the kids just have this unique, um, they're they're just given a unique perspective that changes them even from a little age on, or it's just it is just that the Holy Spirit working through and you know, just bringing that whole experience of people together. And then somebody does something for you, and then you see a need in someone else, and so it just is a gift that keeps on moving and giving in a very traumatic state, isn't that? It's so beautiful. And you know, once you've um, you know, you don't even know those people that well, but you become family.

SPEAKER_04 36:36

Yeah, you do.

SPEAKER_01 36:37

It's a family you don't necessarily want to be a part of, but it's it's an amazing um a connection that really sustains you long term.

SPEAKER_04 36:48

We we we spent on third floor of a hospital for seven months, in and out of the hospital with Amos's brother. And they it became, I mean, they were at the memorial. They were it was such a family unit. It was beautiful what they go through and what they see, the doctors and the nurses.

SPEAKER_00 37:07

They're a they're a special breed.

SPEAKER_04 37:09

Oh, they are special.

SPEAKER_01 37:10

They are, they have a gift beyond, you know, earthly angels. Oh, for sure.

SPEAKER_00 37:16

So be nice to them.

SPEAKER_01 37:17

Yes. Oh, absolutely.

SPEAKER_00 37:19

It's just like there there are a few people that you don't mess around with. You don't mess around with your barber because they do your hair. You don't mess, you don't make your tax consultants or your person doing your taxes matter. That's all right. You want them to go the extra mile. You don't mess with your airplane mechanic or your nurses. Right. Encourage your nurses, they are there to help, and you want them on your side.

SPEAKER_01 37:44

Absolutely. And we experienced just, you know, bonds with all of them. I mean the emotion, yeah. And for them to want to continue when you see what those kids go through and you know, losing patience that age, it's and yet they continue to just say, Well, you know, but the things we get back from from these kids and from you as families is is a gift to us too.

unknown 38:16

Yeah.

SPEAKER_04 38:17

The emotional roller coaster that the just the emotional upside like for everybody involved. Right. Yes, he's getting better. Yes, we got it, yes. Oh, it's back. Oh, you know, it's like because he was in remission twice. Twice, yep. So he came out of that second one at full remission.

SPEAKER_01 38:34

He did. He's back in sixth grade. Well, he never went back to school because it came back so quick. But it's right. Um it was I believe April March. And um, I went back to school just as a sub. And then um he was doing very well, so he enjoyed having some independence during the day, but he was very tired, so he'd sleep a lot. And um I believe it was maybe two months close to. He was very he had gone back to baseball practice, so they had just started practicing for spring, and then he was going to go back like for the last month of school. And uh he went in for one of his blood work appointments, and it was like from you know, the week before, just like that, all of a sudden it was back. So, and then the plan became well, he needs a bone marrow transplant because it had gone from a lymphoma to now a leukemia. So um that became our next focus, and we went to the cities and he had his workup and um to Minneapolis, and he was gonna be at children's there as soon as he was done with they do a new line of chemo to kill off um basically all your cells. So it's a you know, it's a it's a very tough regimen. And um, so he was just a week away from we were going to go to Minneapolis to have his transplant, and it was it it came back within, you know, a week or two. So that became the first discussion of, you know, um with Burkett's and how it's it's moving. You know, we need to look at some other options because we're kind of running out of things that are working. It'll work short term, but it's not, you know, his body's not responding. So then it became this whirlwind of, you know, is he get there's a place in um, you know, Cincinnati, or we send him to Texas to um a hospital there. And uh it, you know, they had to try to find trials to get him into and that he would fit into. And so it was just this, you know, preparing for being gone for at least a hundred days and being away from your family, but having the hope that it was going, you know, to be the answer with the transplant and all that to just now just hoping and praying there's something out there. And so it we did. And the beautiful thing about um, you know, the children's oncology world is they just have this network of, you know, it doesn't, it doesn't have to be a this hospital here. It's we'll call every, you know, they we'll we called St. Jude, we'll call, you know, Massachusetts, and it's it's about getting that kid the the services they need and and that and that miracle. So and then you know, our oncologist would say, is there anywhere else, you know, that you want us to try? Is there anything, you know, do you have any limits as far as where you would go or what you would do? So they did everything. And then so, you know, they'd say, well, um, you know, he doesn't fit into Cincinnati, but we talked to the, you know, this doctor, and we're gonna try these new drugs, and one was an oral chemo, and so was like he'd respond to that, but then his body just got so worn down, and he just, you know, couldn't stay ahead of it. And uh going into his last round, he actually looked really pretty good. And uh had September, first week of school, everybody was off doing their thing, and um he got to enjoy being in his new room and the new house, and so he was just kind of loving life and enjoying things, and so um we went back in for the next round and he would he would just get so sick from you know the side effects. And then it was just one thing after another. Are we fighting side effects or are we fighting, you know, are we fighting both? And so, you know, they're like, well, things, you know, blood work is looking good. I mean, it's getting better, is but then as you were killing everything off, then all the other things happen. And then um it came to a point where I was just praying that she said, Well, there's one other option we can try. And he was in ICU because he just gets so dehydrated and he was um he was on oxygen because he just wasn't able to keep it up himself. So they sent him back down to, as Ethan would say, the the regulars floor. And uh um still just doing his doing his thing, doing his gaming, just as you know, upbeat as can be. And then uh the day they took us into the room. Um, you know, when you go into this little consultation room that it's like gloom and doom room because they bring in some of the ICU documents. Palliative care. Yep. And so um we loved our palliative care team. They were absolutely incredible. And so, you know, they're like, well, you know, we'd like to try some hypnosis. And, you know, knowing that he's, you know, no matter what, he was still I mean, he was still doing chemo, but just needed extra meds, needed that morphine needed. And it became a really peaceful thing to watch. And I think that helped Ethan, but it helped us as well. And the palliative, I mean, he didn't process that, I don't think, but the um we I became really close with the chaplain, and she was so present as well. And um, she just said, too, there's just a piece about Ethan that you know we can only explain as as being from above, because he was just, hmm, oh, this is what it is, and so accepting, and um I said also oblivious, but that was okay. I mean, I think that was part of also his coping mechanism, but you know, then maybe it was a little bit of the pain colors and everything, but he was just so happy and you know, just himself, just kind happy, goofy Ethan. And uh then um the doctor said, Well, there's one more chemo we can try. It's something he's never had, something brand new, and um because it was starting to fire up and it was in his spine. So we knew that once I got to spinal fluid, that's kind of your last, you know, that's the last part that you want it to do. Because now with neurolog, you know, neurolog It's a tough word.

SPEAKER_00 45:40

Neurologist in the brain, that's it's not good.

SPEAKER_01 45:44

Um, so I don't think he ever knew that, but uh Aaron was doing his thing with the siblings and so which Aaron is the dad, yes, my husband. And um, you know, that was hard for me to accept why do I, you know, why am I always the the strong one that has the you know why do I have to tell Ethan, okay, this is it, you you are dying. And what what you know, I'm like, why do I have but um looking back, you know, sticking to that we needed to be where we needed to be was definitely um in God's plan because um you know my husband being the strongest person I know just it's hard to look at your child and say we're giving up on you, you know. So our doctor said to Ethan, well, you know, we we have one more chemo we try because it's brand new and it's something that you know we don't know, but it it could be something that at least gets you through this hump and then you know maybe we can get back to the bone marrow transplant. We we don't know. But other than this, there's nothing else we can do. And Ethan said, What do you mean? If I don't do the new chemo, I die. And I just shook my head and we both said yes. And he said, Well then get the trip hooked up, let's go. So, you know, in that moment I was praying to God, please just let him, please just let him be okay with not doing chemo. But in that moment I realized that, you know, Ethan was that's that became his that was his piece. Like, I don't want you to be anymore sick, but for him it was like, am I fighting? Yeah, where are we even? And then later he's like, Why are we talking about this? Like, what the heck is wrong with you in a discussion? And so then when I told Aaron that, you know, I'm like, our doctor would always say, I'm gonna tell you when it's okay, not not like when it's okay to say okay, you know, when I don't think it's reasonable or beneficial. And so she's like, so they did, and uh he you know, it obviously didn't didn't work because it was like three days later that he passed away. But um, I went home to Kelvin's football game and uh that Friday night, and then Aaron called me at like three in the morning and said, His breathing's really weird, you should get here. So my daughter had a sleepover, and so um her mom came and picked up um her daughter, and then we shot off to Sioux Falls, and we all stayed overnight, and then he had like the spring back before the the fall, yeah. And uh he got you know, the next day we were eating pizza and um all hanging out, and but we got to all be in the room and sleep in the recliner and whatever. And so then uh Calvin and uh Aaron went home for a while, but Maya wouldn't leave and we stayed, and like I said, we had he had a really good day. And then later uh Aaron and some friends of ours came up and they had brought Kelvin. He was staying with one of his good friends, and uh he then was very medicated then, but he was still trying to game, and you could tell he was like trying to stay awake, and you know, now we know that he was probably, you know, I mean, watching um like when my dad passed away too. You see these moments of are they crossing between? Oh, or is it just you know his medication? But uh he was playing and then he threw his remote at Kelvin and he said, Here you play, I'm now good. Oh like I'm having you know he'd try to look and kind of open one eye. I think he was just you know, he had a lot of morphine, and then plus they were doing chemo, yeah. So then a lot of stuff we just eventually we stopped because the chemo was that day was causing his he had excess fluid and we it was putting pressure on everything, so we didn't tell him, we just took him off. But I mean he was gaming and eating and happy up and you know, I mean, definitely not. I mean, he was so sick, yeah. But I mean, for that moment, knowing now, I mean, even the doctors and nurses said if you would have told me when I went home, you know, on Friday that Ethan wouldn't be here Monday, I would have never guessed that. Yeah, it was peaceful, peaceful. And I just, you know, I say nobody says how, you know, you don't pray for your child to die, but that in that moment I was like, oh, you know, just let him go to heaven and game and fish, and yeah, so and pain, enough. It's you know, harder to sustain going forward with that than and you saw the toll it took on your other kids watching him be so sick.

SPEAKER_00 51:22

So yeah, oh I would when my brother died, I'd people would console me. I'd say, he he got the upgrade. I miss him.

SPEAKER_01 51:32

Right. That separation is so hard.

SPEAKER_00 51:34

We're stuck here with COVID, you know, you got the upgrade.

SPEAKER_01 51:37

That's right. That's right. I know, and so is you know, you feel bad feeling um, you know, that separation and knowing that, but but what they where they are, and you know, what you you can't be sad about about, you know, he's just with a different he's with a different dad. Yeah.

SPEAKER_00 52:00

It's such a different perspective when you have that faith. We've been around family who don't have that faith, and it's a really it's a different mourning process, isn't it?

SPEAKER_01 52:07

It's real sad.

SPEAKER_04 52:08

I cannot imagine, I cannot even fathom what that would look like without knowing Christ, without having him to lean on. Yeah. And I really don't ever want to find out. And so for our audience, it's life when you think about faith and you think about Christ and having your best friend with you every step of the way through these types of adversity and moments of life that you didn't expect. It's like having Christ and that unfailing love that holds you and your family and everyone together is so important.

SPEAKER_01 52:43

And um on see, so mid-September, Ethan was going through chemo and then he died October. So he was in the hospital about a month. But Aaron and I both had birthdays in September, a few days apart. So Ethan was working with um one of the nurses to get him supplies because he was making cards. And then um he was an avid outdoor, he loved the outdoors, he loved nature, but he was never uh like fishing was his thing. Like if there was one thing he could choose, it would be fishing, sports, whatever. But fishing was his thing. Um, but he never wanted to eat the fish, he was always throw it back, and so if we did, he'd kind of hide, be like, we're gonna have a fish fry. Do you want some? No. You know, he just said this uh like bugs, whatever, like you just treat life like life. Oh and that's how he was from a little boy on. So, you know, now too, we look back and we're like, oh, you know, he was always a catch and release, and it would bother him so much. Like, um, he went out into the woods with his after he had cancer. They went out into the woods with his buddies and his brother, and they were they were shooting rabbits. Well, um one he came out and he was crying, and he's like, I don't want to shoot a gun. And so one of his entertainment um, you know, you find entertainment where you can in the hospital was in the spring, there was countless bunnies and birds. And so we'd, you know, find all the different kinds of birds and watch them fly. And Ethan would run with his me running behind with his with his pole, with his drip and all the other stuff. What is chemo, and we're running chasing birds, but there were bunnies everywhere, and then there were baby bunnies, and they would hide and you know, run and hide in the bushes, and so that was always, you know, nature was such his gift. And so now um, you know, a lot of the signs that we see are birds and bunnies, and they'll be in the most unique spots to remind you, you know, just a bird sitting out in the middle of the snow drift, and every time I'd open the front door, it was still there. Oh, so you're just like, oh hi Ethan. Yeah, you know, yeah, yeah. That's his memory. Those signs too. I just, you know, not believing in, you know, and and not to say there weren't times where you were so angry of, you know, why would you know, why would God let this happen to children? Or to my child, you know, why why aren't prayers being answered? And then, you know, you look at those moments and you're like, prayers are answered every day here. I mean, the people around you, the nurses, the, you know, how he acted, and those, those, those children all have just this unique um peace and gratitude and happiness that they bring that inspire people. And you, you know, that becomes your awareness that it's it's a gift in every day that it's the presence is there. It's not in those, you know, oh, he was healed overnight. I mean, it's it's in the aftercare of, you know, bringing you that peace and support and love from others. And on our birthday, then he um made us these cards and had drawn a bunny or a bird or whatever in it. And then uh he was an avid rock collector, so that was something that we would order him and find. And he really enjoyed going through his different polished rocks and all those things. So um he was so excited for us for me to get back to the hospital that day. And the chaplain was in there and she had brought him something. I was like, what are they doing? You know, and Aaron, Ethan said, Aaron and I were both there, and he's like, You want to open your birthday cards? Sure. Well, and here it was a card that he had drawn, you know, and his bunny. And it said, in the inside, it said, Sometimes the one thing you, you know, the one, sometimes the one touch you need is love. And then he had a little tiny bag with rocks, some of his polished rocks in there that he had picked out special ones. And the one for me was shaped just like a heart, and it was pink. And then he had his reasons why he had picked things out for Aaron. And so he had these rocks taped in there, and it said, take these rocks to help you remember. So that's why we've kind of carried that forward as his message to others. And then I said to him, Wow, Ethan, that's really beautiful. And I said, Did uh the chaplain, did she help you with that? He looks at me, no, I no, and he she said, No, all I gave him was the baggies for the rocks. And I was like, Wow, Ethan, that is so and I thought, wow, you know, it was less than a month and he passed away. And I thought, that's gotta be a God thing, too. He was preparing, he was preparing, and then I think, or in his little mind, did he know and he was more worried about helping us prepare. Oh, and so that's you know what is visit, is it visitation and his funeral? We gave those out, we copied them out and bought some green glow-in-the-dark rocks because that was his hands for that color. So a lot of people that has kind of really kept me going too. People will say, Hey, you know, um, we still have your rocks hanging up and we think of Ethan all the time. And that, you know, those bad days, you just need a touch of love. A touch of love, a touch of love.

SPEAKER_04 58:19

Oh, Heather, that's really beautiful. Thank you for sharing this whole entire story. Absolutely. We can end here by saying, Go live like Ethan. Go live like Ethan. Spread joy. Oh, thank you.

SPEAKER_01 58:32

Thank you so much for having me.

SPEAKER_00 58:34

Thanks so much. Thank you so much for listening. We want to change lives through this podcast. And if you want to support this podcast or our guests, please see the links below for our Patreon and giving links.

SPEAKER_04 58:45

And like and subscribe and also share our podcast as much as possible. Thank you.

SPEAKER_00 58:52

After we wrapped up our podcast, we kept talking to Heather and asked some more pressing questions and maybe some more sensitive questions. But we'd like to show that to you now. People say, well, I I guess God didn't another angel.

SPEAKER_01 59:07

And what your take on that polymer making, which was that's a great, that's a great question. I'm glad you asked me that because before, you know, before Ethan's story, my you know, my answer is always like, yep, I guess, yeah, you know, I guess so. I I guess that was their time. And um just in visiting with with other parents with different walks and different levels of their faith, um, and learning from other people as well, I say, uh, I I don't know that I can't say I believe in one thing or another, but as far as, you know, well, God chose, you know, him to, you know, be his angel. And that, and that that very much well may be true, but um I don't see cancer as um, you know, some people would say, well, you know, it's just a it's just an evil lurking in there. And I always thought that's a horrible thing to say to to a a cancer parent or to a patient, if an Ethan would say, so I'm evil. No, and I don't think that you know God necessarily would pick someone for that suffering. And I don't know the answer to that, but but in my mind, and in my faith has changed very much in that I live a very simple faith. And I believe that God is there in every moment, no matter what that looks like. He doesn't pick or choose, we're not special or unspecial. He's just there. And whatever that looks like, you know, he's gonna help you through. And for Ethan, I mean, he had his handheld cross, and you know, for him it was very, you know, very comforting. So I'm very careful about saying, well, I guess it was their time.

SPEAKER_03 1:01:08

Yeah.

SPEAKER_01 1:01:09

No, I don't think it was. I think it just is, and God's there to give you that support and love in whatever that journey is.

SPEAKER_00 1:01:18

It's interesting. It's I wonder why people think that. We live in a fallen world, and and we there is sin, and sin some people would say it's sin can manifest itself in sickness. And then they're like they're kind of intertwined. And you you live in this fallen world, and some people get sick, and some people die from that sickness. And it wasn't God's plan, because God's plan was never was for the fallen world.

SPEAKER_01 1:01:42

Right.

SPEAKER_00 1:01:42

It's a consequence of the fall from Ab and Eve.

SPEAKER_01 1:01:45

That's that's that's a that's a very good way of looking at it, and thought about that.

SPEAKER_00 1:01:50

Yeah, and then so then so if people then the next well, the next step is well, why God let that happen? Well, right, he gave us choice. And I I think of like Nate getting leukemia. Was he 19 or 20 already? I'd I look at it and go, Nate did something. It wasn't he didn't turn left or turn right, you know, he'd make it some con something, somehow Nate got leukemia.

SPEAKER_02 1:02:15

Right.

SPEAKER_00 1:02:15

We don't know why. He wouldn't choose it, but he did. He got it. And Nate gave Nate leukemia.

SPEAKER_02 1:02:23

Right.

SPEAKER_00 1:02:24

Somehow. It was out of his control.

SPEAKER_02 1:02:25

Right.

SPEAKER_00 1:02:26

Uh but it wasn't God that gave Nate leukemia, and God's will was that he be healed. And and we saw him get healed through lots of through prayer. And ultimately it was it it still didn't work for him. We don't know why.

SPEAKER_01 1:02:42

No, but and in you know, in that healing process, asking those questions doesn't help you heal, it holds you back. So for me, it was well, it doesn't matter why. It just it was. And now after the fact, you look at all the things you can do to make the good of that, you know, like he would want us to continue to help other people and to reach out to other cancer families or to anyone that's having a difficulty, and to teach other kids like my class, my classes or my own children that, you know, these are the things that matter, having empathy and kindness and respect for other people and and just gratitude for for each day, yeah, you know, and whatever that looks like. Because there we all have tough days, and some unfortunately more than others, but that within I always say, well, what's your rabbit or your bird of the day? You know, what's your bright spot? And there's not a lot of, you know, especially for a 12-year-old boy. He doesn't like the color, he didn't like the art lady, he'd be like, Don't tell the art lady, not the good because he never enjoyed, he was not into any of that. So it was like, I like it when the zoo people come. So, you know, you can find those bright spots, and I think that's that's God's will. Yeah, for sure.

SPEAKER_00 1:04:10

We talked to someone recently who went through cancer as an adult. And um when she this was I think in the last year or two. And as you know, recently there's there are some there's a trend that combats cancer from the 100% the immune system side. Right.

SPEAKER_02 1:04:29

Right.

SPEAKER_00 1:04:30

And some people people call it a juice diet, or or um you have 12 juice shakes a day or something like that. And this uh person was talking to the oncologist, and she'd done her research on this, and she said at the end of her meeting, hey, what about this this this diet, this other way of this alternative form of doing it? And she said, Yeah, yeah, that might work. The oncologist said that that might work. And she uh the lady said, Well, why didn't you bring this up? She says, I don't, I don't have time. I have I've got meaning, I've got to get, I've got these all day long, and I just I don't have time. And so it was sitting in her lap, this knowledge.

SPEAKER_02 1:05:09

Right.

SPEAKER_00 1:05:10

And she didn't convey that to this patient. And um, I truly have not heard any of of really good outcomes of using that method.

SPEAKER_02 1:05:19

Right.

SPEAKER_00 1:05:20

But I also know how poisonous chemo is. Yes. And you go through it and you're like, that's the best we have. That's barbaric.

SPEAKER_01 1:05:27

We're poisoning your you're we're poisoning our children, we're poisoning our systems.

SPEAKER_00 1:05:31

You're in a way taking over what God designed to do, the immune system. Right. And so if if I mean there's there is taught there's ways to like get processed foods out of your immune system so your immune system can do what its job and not be focused on processed foods, right? Um sugar is another thing. You get in there and they give you pudding full of sugar in the hospital. So I just wonder, looking in in the rear view mirror, if those are things that you had looked at um If those if you would have tried things like that given the knowledge of that?

SPEAKER_01 1:06:06

And I think um there were a couple of different well we had like the chemo diet, you know, the um that you would look up on your own. Uh or like through Pinterest or whatever it's like, you know, what what's good for these kids?

SPEAKER_00 1:06:21

What's a chemo diet? Is that low sugar?

SPEAKER_01 1:06:23

Yeah, lower sugar or um, you know, like making more things from from scratch. But um for Ethan, it became we're gonna let him have whatever he'll be able to eat because he was so limited between his mouth sores. And then when he felt well, you know, then that's when we would try to, you know, like, and he was a yogurt kid, so you know, we'd make like uh yogurt pops or um like puree vegetable type things and and freeze it and put it into he would pretty much eat or drink anything. And so, you know, that way, or like certain side effects, you know, we use a lot of essential oils. And for him, peppermint worked for nausea better than a lot of the the meds that they would give him orally, and so we found, you know, you'd do those, or you'd talk to other cancer patients or parents and they'd say, Hey, we try this. You know, we just keep peppermint sniffing salts, or you know, for um like they'd get his feet and hands would peel really bad from the chemo. So, you know, beforehand, if you eat, you know, a lot of you know, use your B vitamins and then, you know, just use like coconut oil and put it, you know, I mean that type of thing. And there were a couple different treatments that um included more of like a natural supplement that we would give him on the side. I can't remember what it was called now. Um it was when he was going through one of the chemos, and I asked his oncologist about it. And the thing with Burkett, and and I mean, I think you're willing to try anything, you know, and anything that would that would would make a change without the poison.

SPEAKER_00 1:08:16

It's so hard to in that moment, you don't know what the future is.

SPEAKER_01 1:08:20

Right.

SPEAKER_00 1:08:20

And how do you you your oncologist is saying one thing and you've got the the world or social media saying another thing, right? And you're stuck in between, and what a stressful situation. It was just recently I was in coming in between my CPA and my CFO, my business, and they were saying different things, and I'm going, uh I I just want to get everyone in the room together and talking so we can figure out what the right solution is here. And everyone's opinionated. That's right, and everyone feels like they're standing on firm ground, and you're in just really tough situations. So I I don't want to make light of that decision.

SPEAKER_01 1:08:55

Oh, no, but you're you're exactly right in the time. And um, you know, people would say, uh don't don't Google burkettes or don't Google the whatever because it's all it's so different for everybody, and side effects are so different for everybody. And so um, I mean, I did to some extent. I of course you're you're gonna learn about the disease and learn about like when the leukemia and I read about everything there was about you know bone marrow transplants, and we all got tested and to see if we were donors. But at the at the other time, at the same time, um it is a relief. Like I'm just going to live in this moment, and for me, it became the more I know, the more exactly that. What should I do? The more I know, the more uncertain I am. And um we had one of the oncologists was more into the in research based, and then um he did leave and he went to North Dakota just to do like children's oncology research. And so he was really open to, you know, you kind of had an oncology team, you would see. And so um he was very open to looking at different things, and I would ask questions of, you know, um, this is, you know, is this an immune system thing? Because Ethan had a lot of eczema growing up. I mean, as a parent, you start looking at every little thing, you know, was that well, it was severe. Was that an immune disorder? Was it, you know, was it something that triggered it?

SPEAKER_00 1:10:31

And um gosh, you can't do that.

SPEAKER_01 1:10:34

No, and then I realized that the time-wise you want to spend that time, you you don't have you think in the hospital you have all the time in the world, but you're constantly, you know, getting them something or finding something for a symptom, or and I just let go of the and just let the piece be. I'm gonna be the best caregiver that I can be. And we're I don't want to be naive, but I'm going to trust that between Mayo and St. Jude and Massachusetts and all these other networks, that somebody would know what's best. Yeah. And our oncologist, I think, was very honest in the fact that I want your child to live. If you want to go somewhere else, you go. I get it, you know. That's great. But for us, it just became the availability of of being there. And Burkett's lymphoma is a beast. And like I said, you we don't have the luxury of time. When it's when it's doubling in 24 hours, you don't have time to sit and call different hospitals and get different opinions and it was you start chemo now.

SPEAKER_00 1:11:45

Yeah.

SPEAKER_01 1:11:46

So you don't end up in the situation where he was with, you know, in the ICU for three weeks.

SPEAKER_00 1:11:51

When I had debilitating brain fog, I had my doctor saying one thing. And then I found a chiropractor, kind of a um a um functional neurological chiropractor.

SPEAKER_03 1:12:01

Yeah.

SPEAKER_00 1:12:02

Who then approached it from a di totally different point of view. And you I was in a state where I can't, I can't function. I can't remember three digits, four digits for more than a couple seconds.

SPEAKER_01 1:12:11

Yeah.

SPEAKER_00 1:12:12

So hard to be a father and a husband and to try to function that way. Right. And so you get these, you just go, oh, okay, whatever works, this doesn't work, and so let's try this whole this thing. And this is the the chiropractic side was so new and unusual to me. I was skeptical, but ultimately that's the one that worked for me. It wasn't the doctors. And doctors are very the confident.

SPEAKER_01 1:12:34

Yes.

SPEAKER_00 1:12:35

That they have their way.

SPEAKER_01 1:12:36

Yes.

SPEAKER_00 1:12:37

And uh I just appreciate the challenge of that. And um we're kind of stuck in the middle. There are times where I want to get my doctor, my mustache therapist, yes, and my chiropractor all in the same room and come up with a care plan.

SPEAKER_01 1:12:51

Yep.

SPEAKER_00 1:12:52

You know, that should be a thing.

SPEAKER_01 1:12:54

That should be a couple of things. It should be a thing, right? I mean and I will say, you know, with with Ethan's care in the in the child, as I always say, well, in the children's world, because we know people in the, you know, in the adult world as well, but in the children's cancer world, um, like his palliative care, we call them the pain doctor, and uh his palliative care team, the chaplain, the ICU doctor, the oncology team, the physical therapist, you know, at least we had when, and um what I loved about it was you had ICU doctors there, or maybe you were in the ICU, but they'd say, Okay, we're gonna, you know, we're gonna do our team round. And it was all of them, your social worker. And they would all in the the rounds, they were all there together. That's beautiful. Because, you know, then the chaplain might say, Well, oh, wait, well, you know, and this the psychologist, even though Ethan was not having it until he had another little boy that was a couple years younger, they came together, they would do therapy sessions together, which was amazing I mean, I still don't know. She, you know, didn't say, but she said they're doing such amazing things. And so, you know, it'd be like, Well, he did say this yesterday, or you know, we noticed this, but it would always come back to um, we're giving you this information, but you're the parent. What do you see?

SPEAKER_00 1:14:28

So he was doing that, he was doing their uh psychological therapy sessions. Oh, that's amazing.

SPEAKER_01 1:14:33

Yep.

SPEAKER_04 1:14:33

I would love to be in that room.

SPEAKER_01 1:14:36

Oh, with that psychologist. That is with all the one thing that in uh this boy, I wouldn't ever ask him of it, but I just want to say to his friend, like, what did he tell you, Jackson? And Jackson in this particular boy did have um, he had a stem cell transplant, which he had had um reoccurring leukemia, and it it the stem cell transplant almost killed him, but he came through. And um, when he was in his really tough time right after the transplants when Ethan died, and his mom said that he had had a dream about Ethan, and so when he had talked, she's like, it's almost like he passed through on his way and said, You got this. And so now, you know, he's four years past with no problems, so beautiful. Yeah. And he they were buddies. The the the hospital, he was a huge Marvel fan. They both were, and so when Avengers Endgame came out, I think that was one of Ethan's darkest days, too. We were all gonna go together as a family, and that's when his cancer had come back that the last time. And on the day he went in, he's like, Avengers out, an end game comes out today. And so um, our um his kidney doctor, his nephrologist was just a kid at heart. He was amazing, and he had an amazing way with these kids. And my son, Ethan, was the avid Tom Brady fan, and we know he knows. I mean, he's a Vikings fan because we're from Minnesota and he knows that, but he just loved the Patriots and he loved Tom Brady, and so our nephrologist was a huge Chiefs fan, and they have this huge rivalry, so they always had that going back and forth. So that was fun. But he came in and he's a huge Marvel fan too, and he said, Ethan, how would you like to see an endgame at the hospital? And Ethan was like, What? He's like, turns out we have this Disney machine, like no one really knows how to use it. So he's like, It's like a contract with Disney. We we can stream new movies, like now movies. That's cool. So he's like, give me a few hours, and so he and this other boy and his mom and me. And then he's like, and a few residents that are dying to see it, and then he had seen it, so he's like tapping Ethan on the shoulder and he'd be like, wait till you see this. And Ethan was like, it's like, golly, I wish he wouldn't have kept. He was like a spoiler alert the entire, but yeah, we were downstairs in one of their huge like um meeting rooms watching on the big screen on this big screen. So it was, you know, so many again, like those people have a gift from God. I mean, he was unique and you wouldn't, you know, be in those situations. So, but you know, I think the biggest takeaway too in in all of that discussion is that you have to you you really number one, always always question and know that you're you know, advocating for your child is not is not questioning somebody in a negative way. It's you do whatever you have got to do, and then you have to let go and realize I did everything that I thought was right for him or her or whoever. Or in that that goes for the adult world too. Yeah, you know, and just and I think too, and knowing the piece of you can ask why or what ifs, what you you know, should we have in should we should should should should and then shoulda coulda woulda. That's right, and that's when I just say, Well, we put it in God's hands, yeah.

SPEAKER_00 1:18:09

Yeah, that's beautiful. Thanks for thanks for expanding on that.

SPEAKER_01 1:18:12

Thank you, thank you guys.