Latest / The Keri Croft Show / Little Legends Lemonade Ep 05: Why Better Treatments for Kids Can't Wait

Transcript

Little Legends Lemonade Ep 05: Why Better Treatments for Kids Can't Wait · The Keri Croft Show

• 0:00
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• 0:02
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• 0:21
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• 0:24
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• 0:26
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• 0:35
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• 0:46
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• 0:53
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• 0:58
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• 1:01
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• 1:05
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• 1:36
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• 1:42
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• 1:47
  Keri Croft: Hey there, you beautiful badass.
• 1:49
  Keri Croft: Badass.
• 1:52
  Keri Croft: Welcome to the Carrie Croft Show.
• 1:57
  Keri Croft: Okay.
• 1:58
  Keri Croft: I'm so glad you guys came.
• 2:01
  Keri Croft: John and Renee, welcome to the Carrie Croft Show.
• 2:04
  SPEAKER_00: Thanks for having us.
• 2:05
  Keri Croft: Thank you for having us.
• 2:06
  Keri Croft: You know, my cop runneth over here today with all this Cancer Free Kids stuff.
• 2:09
  Keri Croft: Like it's great work that Cancer Free Kids is doing, and it's important to get underneath the actual people and stories and life that is happening so that people can understand like why does this exist?
• 2:21
  Keri Croft: Why is it so important?
• 2:22
  Keri Croft: And why should I care?
• 2:23
  Keri Croft: And why should I get my wallet out?
• 2:25
  Keri Croft: That's what we're trying to do with this lemonade stand.
• 2:28
  Keri Croft: Do you know about the lemonade stand?
• 2:30
  Keri Croft: I've heard of it, but don't know all the details.
• 2:32
  Keri Croft: Are you guys gonna come to Lemonade Stand?
• 2:34
  Keri Croft: It's August 2nd, 11 to 1, Tupelo Honey Lane Avenue.
• 2:37
  Keri Croft: Yes.
• 2:38
  Keri Croft: You might end up in the adult lemon costume.
• 2:40
  Keri Croft: I don't know.
• 2:41
  Keri Croft: I'm not ready for that.
• 2:43
  Keri Croft: I'm ready for anything.
• 2:44
  Keri Croft: You seem like a guy that would be up for up for a challenge.
• 2:48
  SPEAKER_03: The problem is that we're like the spectrum, there's only certain sizes for the costumes, and I'm on the short end and he's on the tall end.
• 2:54
  SPEAKER_03: So we may not fit, but we we'll do it if we can fit.
• 2:57
  SPEAKER_03: Yeah.
• 2:57
  SPEAKER_00: We're outside of the one size fits most.
• 2:59
  SPEAKER_03: Yeah, this is true.
• 3:00
  Keri Croft: How tall are you?
• 3:01
  SPEAKER_00: Six three.
• 3:01
  Keri Croft: Oh, yeah.
• 3:02
  Keri Croft: It looks like a pretty like a short lemon.
• 3:04
  Keri Croft: I need to go, I need I need to go on Amazon and research the extra large lemon.
• 3:10
  Keri Croft: But yeah, so the lemonade stand is August 2nd from 11 to 1.
• 3:14
  Keri Croft: There are so many great giveaways.
• 3:16
  Keri Croft: So the local business community always shows out.
• 3:20
  Keri Croft: Um, and I hate that I don't write this down because I know I forget people, but we have got probably 10 different businesses that are giving really good stuff just for you to come and just donate.
• 3:33
  Keri Croft: So every$50 you donate, you get a chance.
• 3:36
  Keri Croft: So if you want to give 200 bucks, you get four chances.
• 3:39
  Keri Croft: Um, and it's you know, you should want to come without even getting anything in return, but it's it's always a nice carrot to have a giveaway.
• 3:46
  Keri Croft: There'll be music, there'll be adult beverages.
• 3:49
  Keri Croft: Tupelo Honey has also been very generous to put uh adult lemonade on their menu and they're gonna do like for I don't know how many weeks before, they're gonna donate a part like a portion back to the adult lemonade sales.
• 4:03
  Keri Croft: So we are just cranking here.
• 4:05
  Keri Croft: We're trying to raise five grand in two hours.
• 4:08
  Keri Croft: We're gonna open up donations about a week before.
• 4:10
  Keri Croft: So if we go over that, we will be very excited too.
• 4:14
  Keri Croft: Let's stop talking about me and let's talk about you guys.
• 4:17
  Keri Croft: So, who wants to start?
• 4:18
  Keri Croft: How did your journey with cancer start?
• 4:23
  SPEAKER_03: Um, so my son was three.
• 4:27
  SPEAKER_03: He had been feeling sick for three, four months, fever.
• 4:31
  SPEAKER_03: We I'll also prefaced this was during COVID.
• 4:34
  SPEAKER_03: So it adds an extra layer of alcohol interesting things.
• 4:38
  SPEAKER_03: Um, and so they kind of thought, well, it's a cold, it's this, it's that.
• 4:43
  SPEAKER_03: We didn't really think anything of it.
• 4:45
  SPEAKER_03: We had been to the doctor multiple times.
• 4:47
  SPEAKER_03: Uh we went, I was also due in April.
• 4:50
  SPEAKER_03: Um, so we went and saw his sister to visit.
• 4:56
  SPEAKER_03: Again, he had kind of not been feeling the best.
• 4:59
  SPEAKER_03: And then he we woke up and he had blood clots all in his pull-up.
• 5:04
  SPEAKER_03: Um, and it was pretty like traumatic.
• 5:07
  SPEAKER_03: I was like, oh my God.
• 5:09
  SPEAKER_03: So we called, they're like, because he has a fever, we you will do with telehealth.
• 5:16
  SPEAKER_03: And they're like, okay, but we're a little concerned because three-year-olds, blood clots, it's not a UTI.
• 5:23
  SPEAKER_03: Um, it's not really fairly normal in that age.
• 5:26
  SPEAKER_03: We want you to go to the ER.
• 5:28
  SPEAKER_03: So for me, I thought, well, it's probably just like a UTI, kidney infection.
• 5:34
  SPEAKER_03: I don't, I didn't think anything of it.
• 5:36
  SPEAKER_03: We were at the hospital.
• 5:38
  SPEAKER_03: I was at the hospital by myself because only one person could go.
• 5:40
  SPEAKER_03: He was with the baby who was two or three months old.
• 5:44
  SPEAKER_03: And we were in Maryland.
• 5:46
  SPEAKER_03: Um, we went to Virginia because they're kind of out in the middle of Maryland, not a lot of hospitals.
• 5:51
  SPEAKER_03: Went to Virginia and they did some tests.
• 5:54
  SPEAKER_03: And I'm like, okay, this will be fine, in and out.
• 5:57
  SPEAKER_03: And they did an ultrasound, they did blood work.
• 6:00
  SPEAKER_03: And the lady said, Well, the ultrasound tech, okay, let me take these pictures.
• 6:05
  SPEAKER_03: And she took the pictures, and then she came back with, I think, the radiologist, I don't know, doctor or somebody.
• 6:11
  SPEAKER_03: So he's taking more pictures.
• 6:14
  SPEAKER_03: And I'm like, okay, well, maybe she's new, maybe they need more pictures, maybe he's picky, whatever.
• 6:19
  SPEAKER_03: And he comes in and he's just taking pictures of the heart, ultrasound, all these extra things.
• 6:24
  SPEAKER_03: And so I said, you know, do I need to be worried?
• 6:27
  SPEAKER_03: You're kind of taking, I'm a very blunt person.
• 6:30
  SPEAKER_03: Something I need to be concerned about.
• 6:31
  SPEAKER_03: And he said, I think your kid has cancer, just like that by myself.
• 6:36
  SPEAKER_03: I bluntness can be.
• 6:38
  SPEAKER_03: And I said, Oh dear God.
• 6:40
  SPEAKER_03: I was probably, I don't remember that at all because I blocked out my memory.
• 6:44
  SPEAKER_03: I was so hysterical.
• 6:45
  SPEAKER_03: And he wasn't there.
• 6:47
  SPEAKER_03: So I had to call him.
• 6:48
  SPEAKER_03: We had to transport.
• 6:50
  SPEAKER_03: You know, I realized hospitals don't take other testing.
• 6:53
  SPEAKER_03: So they're like, we can test, we can treat here, but your other hospital in Columbus is not going to take it.
• 6:56
  SPEAKER_03: You're going to have to redo everything.
• 6:58
  SPEAKER_03: So they pumped him with IV fluids.
• 7:00
  SPEAKER_03: We drove back through the night and they did the surgery the next two days.
• 7:06
  SPEAKER_03: Um, and that's kind of where it all started.
• 7:08
  SPEAKER_03: I don't know if you want to share anything else.
• 7:10
  SPEAKER_03: What what type of cancer?
• 7:11
  SPEAKER_03: It was um Wilm's tumor, a stage four kidney cancer.
• 7:15
  SPEAKER_03: And so, you know, we didn't really think too much, like with like, okay, they came up with the first plan, which was DD4A, which is a less aggressive treatment, but because so you sit in this waiting game.
• 7:29
  SPEAKER_03: That's the whole thing that I hate about this specific cancer, is you sit in the waiting game for path to come back, pathology to come back, on whether it's favorable or unfavorable.
• 7:39
  SPEAKER_03: Um, and so you don't know.
• 7:41
  SPEAKER_03: So you're doing this treatment, you have the surgery, and you're waiting, and then finally you get the pathology back.
• 7:46
  SPEAKER_03: And the pathology was favorable.
• 7:49
  SPEAKER_03: Just unfavorable is less certain, like, you know, not as good results, doesn't respond to chemo, doesn't respond to radiation as well.
• 7:57
  SPEAKER_03: Um, and so then we got the results back, and there was some deletions and gains um with the chromosomal abnormalities of the tumor itself, not in my son.
• 8:09
  SPEAKER_03: And so then they had to up the treatment.
• 8:12
  SPEAKER_03: Um, so it was a longer treatment, along adding in radiation because it had spread to the lungs.
• 8:18
  SPEAKER_03: So um, and that's mainly when you have kidney cancer specifically with Wilm's tumor, the first place it will spread besides the lymph nodes and things like that, is the lungs.
• 8:28
  SPEAKER_03: So he had to do longer treatment and he had to do um radiation as well.
• 8:33
  SPEAKER_01: So, John, you're getting this phone call.
• 8:38
  SPEAKER_01: Okay, start with hello.
• 8:42
  SPEAKER_00: So I was again, we were expecting, you know, your kid has a UTI, here's an antibiotic, go back to your family weekend, essentially.
• 8:51
  SPEAKER_00: Um, I was at my sister's house with uh at the time my brother-in-law and all the other kids, essentially.
• 8:59
  SPEAKER_00: And when that call came in, obviously she's sobbing and I'm getting like every other word, trying to figure out like, like, what is going on?
• 9:06
  SPEAKER_00: Like, get it together.
• 9:08
  SPEAKER_00: And uh she says they think he has cancer.
• 9:13
  SPEAKER_00: And I immediately just like snapped at my brother-in-law and I was like, get your keys, we have to go now.
• 9:19
  SPEAKER_00: And uh I remember looking at him and he's like, What do we do with uh because there was a newborn there too?
• 9:25
  SPEAKER_00: And I was like, You have teenagers, let them do their thing, you know?
• 9:29
  SPEAKER_00: And uh they ended up watching our newborn, and as soon as we get in the car, I was like, I don't want to say this in front of the kids in there, but they think he has cancer.
• 9:39
  SPEAKER_00: And he goes, Um, we're in trouble.
• 9:42
  SPEAKER_00: I need to swing by the bank.
• 9:43
  SPEAKER_00: And I'm like, for what?
• 9:45
  SPEAKER_00: He goes, because my sister drove her to the hospital.
• 9:48
  SPEAKER_00: He goes, I need to get bail money because your sister's not gonna stay in the parking lot, and she's gonna probably assault a police officer getting in there.
• 9:55
  SPEAKER_00: And sure enough, we got there.
• 9:57
  SPEAKER_00: She was back in the room and passed like COVID protocol.
• 10:00
  SPEAKER_00: And I was like, Oh God, you know, what are we doing?
• 10:04
  SPEAKER_03: Well, like I begged and pleaded with them.
• 10:06
  SPEAKER_03: I mean, I was legitimately like on the floor sobbing hysterically.
• 10:12
  SPEAKER_03: Like when you see ugly crying, I'm just I'm an ugly crier, and um, I I was a mess.
• 10:18
  SPEAKER_03: Like it was so bad I don't remember.
• 10:19
  SPEAKER_01: Oh, I can't even imagine.
• 10:21
  SPEAKER_03: I think it was all I think it was worse because I was there by myself.
• 10:26
  SPEAKER_03: They said there could only be one person there, no one can come back, um, and things like that.
• 10:32
  SPEAKER_03: So I think that made it worse.
• 10:36
  SPEAKER_03: Um, and we were in a state of not familiarity, like we don't know how the hospitals run out there.
• 10:43
  SPEAKER_03: So it was a lot.
• 10:44
  SPEAKER_00: Um I mean, fortunately, the uh hospital that we went to, it was a similar to children's for Northern Virginia.
• 10:53
  SPEAKER_00: And uh they were very candid and honest with us saying, you know, hey, we're happy to treat him, but you guys have a world-class facility at home, and we can give you this giant packet of information, and you can drive through the night, and they'll have an operating room waiting for you when you get there.
• 11:10
  SPEAKER_00: And that's what we ultimately opted to do.
• 11:13
  SPEAKER_00: And um I do remember being the zombie driving through the night, and then dropping her and uh my sister actually came back with us, dropping them off at the house uh so they could get some rest.
• 11:27
  SPEAKER_00: I drove to the hospital from there, and uh, that was during uh lockdown where uh they had a curfew established and they weren't letting like people downtown.
• 11:39
  SPEAKER_00: So I got to like a police barricade and they're like, you can't be here.
• 11:42
  SPEAKER_00: And I remember having a very candid conversation with an officer.
• 11:45
  SPEAKER_00: I was like, I'm not asking.
• 11:47
  SPEAKER_00: I'm gonna go through.
• 11:48
  SPEAKER_00: So what's it gonna be?
• 11:51
  SPEAKER_00: And he was like, just go, you know.
• 11:54
  SPEAKER_00: And uh, you know, I explained to him, you know, what was going on with the kid in the back.
• 11:58
  SPEAKER_00: So uh yeah, it was a very crazy, probably 36 to 48 hours uh of not sleeping, because you know, you're awake that whole day thinking it's just a normal day, and then driving through the night, and then sitting through a surgery, and then trying to be coherent somehow as a doctor's like, okay, here's the next steps.
• 12:25
  Keri Croft: Right.
• 12:25
  Keri Croft: So I mean that's a lot.
• 12:27
  Keri Croft: What what is your son's name?
• 12:28
  Keri Croft: Will.
• 12:28
  SPEAKER_03: Will how's he doing today?
• 12:30
  SPEAKER_03: He's doing great.
• 12:31
  SPEAKER_03: He's plays hockey, he's a goalie, he's doing well in school.
• 12:36
  SPEAKER_03: He's we call him our old man.
• 12:38
  SPEAKER_03: Like he wakes up in the morning, watches, reads the like sports section on ESPN on his iPad, watches TV, wants to check the calendar to see what it the day is like.
• 12:49
  SPEAKER_03: He's more of a planner than we are.
• 12:52
  SPEAKER_03: I I don't know where he got it from.
• 12:54
  SPEAKER_03: What's to be early for everything?
• 12:56
  SPEAKER_03: Uh he's an amazing kid.
• 12:58
  SPEAKER_03: Uh, he really and truly is a blessing from God.
• 13:03
  SPEAKER_03: Um, he, you know, John had, so this was in June.
• 13:08
  SPEAKER_03: His um father-in-law had prostate cancer and was being treated, and then he was diagnosed with testicular cancer in September of that same year.
• 13:18
  SPEAKER_03: So um it really and truly was a lot.
• 13:23
  SPEAKER_03: Uh I look back on it and I'm like, how, wow, this was really bad luck.
• 13:28
  SPEAKER_03: But I was on him, and the doctor, when he got diagnosed, said, you know, you should you should be glad you have a nagging wife because as soon as he said something, there was a problem.
• 13:39
  SPEAKER_03: I was like, I am making you a doctor's appointment the same day.
• 13:42
  SPEAKER_03: I was so probably over vigilant.
• 13:44
  Keri Croft: Wait a minute, you got testicular cancer?
• 13:46
  Keri Croft: Oh, I thought, okay, so when you said that months apart.
• 13:48
  Keri Croft: I thought you, I thought you mentioned that this your father-in-law got both.
• 13:53
  Keri Croft: No, so you had you got testicular cancer.
• 13:56
  SPEAKER_00: A couple months before Will's diagnosis, my father had prostate cancer.
• 14:01
  SPEAKER_00: And uh he was going through radiation, and then Will got his diagnosis uh with kidney cancer, and then a couple months after that, I got my diagnosis of testicular cancer.
• 14:14
  SPEAKER_00: And somehow through all of the genetic testing, they found out none of these were related.
• 14:20
  SPEAKER_00: It was just really bad luck with all this stuff.
• 14:24
  SPEAKER_00: And um, I remember when I was going from one part of uh a medical facility to another to get my initial diagnosis.
• 14:34
  SPEAKER_00: I called her and I said, Hey, just so you know, they're about to tell me I have cancer.
• 14:40
  SPEAKER_00: I want you to know I'm fine.
• 14:42
  SPEAKER_00: I'm just telling you so you can prepare yourself.
• 14:45
  SPEAKER_00: And she's like, You don't you don't need to be so negative, you know, all this stuff.
• 14:48
  SPEAKER_00: And I'm like, I can read the room.
• 14:50
  SPEAKER_00: It's fine.
• 14:51
  SPEAKER_00: Like, I'm fine.
• 14:53
  SPEAKER_00: And I think the worst part out out of my entire diagnosis was the doctor that was going through doing all the testing on me, she might as well have been Dr.
• 15:01
  SPEAKER_00: Ruth.
• 15:02
  SPEAKER_00: So I had this like super old like woman and just essentially feeling me up the whole time.
• 15:08
  SPEAKER_00: And I was like, this is great.
• 15:09
  SPEAKER_00: Not how I pictured this, not how I pictured this.
• 15:12
  SPEAKER_00: This is not how I pictured my Thursday.
• 15:13
  Keri Croft: So how has this manifested?
• 15:17
  Keri Croft: Like, do you get angry about the fact that this stuff has happened ever?
• 15:21
  Keri Croft: Or you guys, like, how does how has this manifested in your world today?
• 15:26
  SPEAKER_03: I think it is a cycle.
• 15:29
  SPEAKER_03: At first, I was upset.
• 15:32
  SPEAKER_03: I was angry.
• 15:33
  SPEAKER_03: Why my kid?
• 15:35
  SPEAKER_03: Um, but you have to really, he's kind of we are each other's, we've been together 21 years.
• 15:44
  SPEAKER_03: So we really balance each other out.
• 15:47
  SPEAKER_03: I'm the hysterical one, um, going off the deep end, worrying, and he's the one that's like, Renee, it's gonna be okay.
• 15:54
  SPEAKER_03: We can only control what we can control.
• 15:58
  SPEAKER_03: We can't change the diagnosis, we can't change certain things, but we will do everything in our power to make sure that our son lives through this.
• 16:07
  SPEAKER_03: So, as much as I was angry in the beginning, I believe sort of this has happened for a reason.
• 16:15
  SPEAKER_03: Uh, my son was put on here for a purpose.
• 16:18
  SPEAKER_03: He is gonna do something really great in his life, and he's going to be able to share his experiences and change others' lives and give people hope and optimism when maybe they don't.
• 16:30
  SPEAKER_03: Um, but this is now, this is six years out.
• 16:33
  SPEAKER_03: If you asked me six years ago, would I be in that same mindset?
• 16:38
  SPEAKER_03: No.
• 16:39
  SPEAKER_03: But I will say from that day, um, I get really teary-eyed.
• 16:45
  SPEAKER_03: I'm sorry, I'm a crier.
• 16:48
  SPEAKER_03: You want to shoot?
• 16:49
  SPEAKER_03: Um, good.
• 16:51
  SPEAKER_03: I will never be that same person.
• 16:54
  SPEAKER_03: When you have a child that is diagnosed with cancer, you're never that same person again.
• 16:58
  SPEAKER_03: You don't look at life differently.
• 17:01
  SPEAKER_03: Um, nothing is ever the same.
• 17:05
  SPEAKER_03: And, you know, you constantly are worrying to this day.
• 17:09
  SPEAKER_03: You know, it's not as much as it used to be, but you still worry about everything.
• 17:15
  SPEAKER_03: Every little cold, every little hurt, every little bump.
• 17:19
  SPEAKER_03: Your mind tries not to go there, but it does some days.
• 17:22
  SPEAKER_03: Every little checkup appointment.
• 17:25
  SPEAKER_03: We have our um visit in August, and I I have to prep myself um before I go the day before on my way to work.
• 17:33
  SPEAKER_03: I have a really ugly cry, and then I'm like, it's gonna be fine, and then I'm good.
• 17:38
  SPEAKER_03: Um, and I try not to do it in front of my kids because I don't want them to know um how it affects me, but you it's I think people don't realize you get hit the end and they say you're cancer free, your kid is in remission.
• 17:53
  SPEAKER_03: But number one, they don't talk about the extensive side effects that will face people's families because of the treatment.
• 18:00
  SPEAKER_03: And that's one of the reasons we want to be a part of um raising more money, is because the lifelong side effects uh because of the way the treatments are, you know, my kid may not be able to have kids.
• 18:14
  SPEAKER_03: My kid constantly has to be monitored for heart, you know, because of the medicine he was given.
• 18:21
  SPEAKER_03: Um, he lost three inches because of the radiation.
• 18:24
  SPEAKER_03: Um, and that's not, you know, necessarily a big deal.
• 18:27
  SPEAKER_03: But also, you know, because of that, you can get secondary cancers.
• 18:31
  SPEAKER_03: Um, we joke that our dental bill has been more than our medical pills because of the chemo, you know, there it kills the enamel.
• 18:38
  SPEAKER_03: So he's constantly having dental issues.
• 18:41
  SPEAKER_03: Um, that's one piece of it, but then the other pieces of the parents and the families and and what it effectively changes your whole perspective on life.
• 18:54
  SPEAKER_03: Um, so I choose to live my life with no regret.
• 18:58
  SPEAKER_03: I live my life to the fullest, and everything else is there's not I'm a teacher, so you know there's rough days, but I'm like, they're like, why is that not worthy?
• 19:08
  SPEAKER_03: You're not getting worked up, you're not overwhelmed.
• 19:10
  SPEAKER_03: I'm like, no, my son had cancer.
• 19:13
  SPEAKER_03: There is probably nothing that will be harder that I have to face.
• 19:16
  SPEAKER_03: So everything else is just in a smaller perspective and not a big deal to me.
• 19:22
  SPEAKER_03: So I don't know if you want to add anything.
• 19:25
  SPEAKER_00: It really does help uh establish that perspective because you know, when things get crazy work, you get overwhelmed with projects and all that stuff.
• 19:31
  SPEAKER_00: You kind of take a step back and you're like, this is fine, guys.
• 19:34
  SPEAKER_00: We're doing great.
• 19:36
  SPEAKER_00: And a lot of the people that I work with, they can't understand like why I'm so even heeled throughout a lot of that stuff.
• 19:45
  SPEAKER_00: Um I I would say in terms of like my emotional experience throughout it, I pretty much turned off emotion for about 18 months.
• 19:55
  SPEAKER_00: And it was just like, okay, this is what we have to do.
• 19:58
  SPEAKER_00: Because in addition to having a kid going through treatment, having my diagnosis, we had a newborn at home.
• 20:04
  SPEAKER_00: So, you know, she and I were trading off going back and forth between the hospital and a newborn, like ships in a night.
• 20:10
  SPEAKER_00: And, you know, the extent of our interaction with each other was a couple text messages throughout the day, like, hey, don't forget to take out the garbage, something like that, you know.
• 20:19
  SPEAKER_01: Yeah.
• 20:20
  SPEAKER_00: And um, you know, maybe some updates on his treatment or something like that.
• 20:25
  SPEAKER_00: So uh it was it was interesting getting through that and um understanding how to communicate with one another again after not being around each other for so long.
• 20:38
  SPEAKER_00: Um, but I think my biggest emotion uh on this side of it is probably being grateful.
• 20:48
  SPEAKER_00: Um grateful for the fantastic doctors and nurses that we have at children's here in town.
• 20:55
  SPEAKER_00: Um and then probably also surprise because while we were going through treatment uh with Will, we found out how little uh funding for cancer research actually goes towards pediatric cancer.
• 21:11
  SPEAKER_00: So we wanted to go through and get involved any way we could to uh help the fundraising for that.
• 21:18
  SPEAKER_00: And uh we were blessed to have a treatment planned that had been thoroughly researched and was successful for our child.
• 21:28
  SPEAKER_00: Um, but not every parent has that outcome.
• 21:31
  SPEAKER_00: So we want to go through and try to make it so that every parent ladies, listen up.
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• 22:48
  SPEAKER_03: Some of our friends, um, their son had been, you know, there's not a lot of kids that are diagnosed with the cancer that he had at children's.
• 22:59
  SPEAKER_03: I think they said they see two a month, maybe one or two a month.
• 23:02
  SPEAKER_00: Yeah, it's like 200 a a year that get diagnosed nationally.
• 23:05
  SPEAKER_03: Yeah, so there's not a lot.
• 23:07
  SPEAKER_03: And there was another little boy that we kind of befriended the family.
• 23:11
  SPEAKER_03: Um, he had unfavorable and he died.
• 23:15
  SPEAKER_03: And it was very hard.
• 23:18
  SPEAKER_03: Um, just because you know, we want to remain friends with them, but I think it's probably we haven't spoken to them for a while, but I don't hold that against them because I think it's hard when your child we have a child that survived, but their child did not.
• 23:33
  SPEAKER_03: I mean, they're doing great, they um have other kids, but there's another side to it as well.
• 23:38
  SPEAKER_03: You meet people, you want to bring them in, but not everybody has the good outcome that we had.
• 23:44
  SPEAKER_03: And I also like to just tell people that really and truly, grief, the way people deal with grief is very different.
• 23:53
  SPEAKER_03: Not that we didn't know that, but the way I dealt with it versus the way he dealt with it is very different, and that can be hard for some people.
• 24:03
  SPEAKER_03: For me, I I did not understand how you can not feel this.
• 24:07
  SPEAKER_03: I am I'm crying, I am bawling, I am sad, I am happy, I am angry.
• 24:12
  SPEAKER_03: And he's just kind of there.
• 24:15
  SPEAKER_03: But for him, the way that he dealt with grief was like, this is what we need to do, we need to have a plan.
• 24:21
  SPEAKER_03: Um, and I needed to be okay with that.
• 24:24
  SPEAKER_03: And, you know, throughout our journey, it has made us, you know, I don't know if you look at the statistics of families that their child either goes through a severe illness, disability, they die.
• 24:35
  SPEAKER_03: The statistics of married people, it does have a high divorce rate.
• 24:39
  SPEAKER_03: And so um, you know, I had to be with okay with this is how he's dealing with grief.
• 24:44
  SPEAKER_03: It's not going to be the same.
• 24:45
  SPEAKER_03: And how do we work with this?
• 24:46
  SPEAKER_03: Because the end goal is to get our kid cancer free.
• 24:49
  SPEAKER_03: Um, but it's very hard sometimes in the beginning.
• 24:53
  Keri Croft: And I mean, I'm sure this this episode will make it into the the ear holes of someone who's going through the unthinkable.
• 25:01
  Keri Croft: And I was actually thinking about that when you guys are sitting here.
• 25:03
  Keri Croft: It's like, how do you keep your marriage together when really it becomes kind of priority number four?
• 25:10
  Keri Croft: Seven.
• 25:10
  Keri Croft: Yeah, right?
• 25:11
  Keri Croft: Five.
• 25:12
  SPEAKER_00: Yeah.
• 25:12
  Keri Croft: Um, and so what your advice would be, because there are people out there right now in the thick, man, you know, trying to sort through what is this?
• 25:20
  Keri Croft: Yeah.
• 25:21
  Keri Croft: And and I'm sure that is one really piece of sage wisdom is like everyone does react and grieve and go through things, giving someone space and understanding that, which is hard at the time.
• 25:31
  Keri Croft: But is there anything else that has gotten you guys through that might be helpful?
• 25:37
  SPEAKER_00: A lot of the stupid things, you know, you just kind of have to take a step back and be like, that's not the hell to die on today.
• 25:43
  SPEAKER_00: We got we got bigger things to deal with.
• 25:45
  SPEAKER_03: So like Yeah, I think you know, we've been together for quite a while.
• 25:50
  SPEAKER_03: We've been together when we were 18, we 18 and 21, and now we're 38 and 41.
• 25:56
  SPEAKER_03: So we've been through many different phases of our life.
• 26:00
  SPEAKER_03: Um phases of maturity, too.
• 26:02
  SPEAKER_03: Yes.
• 26:02
  SPEAKER_03: And so we I we are both not the same person that we were all those years ago, but we've learned to grow with each other.
• 26:11
  SPEAKER_03: Um, and yeah, like, is that the hill that we want to die on?
• 26:15
  SPEAKER_03: You know, is it really something that is important?
• 26:18
  SPEAKER_03: I think that then the grand scheme of things, like making sure for all those years that our kids were our center, especially when he was going through treatment.
• 26:26
  SPEAKER_03: So everything else does get put to the side.
• 26:29
  SPEAKER_03: Um, and so then afterwards coming together and being, you know, like, okay, we're gonna focus on these things for ourselves and taking and not feeling bad during that journey to take time for yourself, like take time for you as a couple, but take time for yourself as well.
• 26:43
  SPEAKER_03: Um, it's okay.
• 26:44
  SPEAKER_03: Like for your mental health, for a lot of other reasons, it's okay.
• 26:49
  SPEAKER_03: You know, I would feel bad if I like went to go get my nails done.
• 26:52
  SPEAKER_03: I did not want to leave the hospital for any reason.
• 26:54
  SPEAKER_03: Like I felt terribly.
• 26:56
  SPEAKER_03: And but you have to like I had to do that in order to come back strong for my kids.
• 27:01
  SPEAKER_03: So taking that time as a couple for each other.
• 27:05
  SPEAKER_03: Um, and you know, we another thing is the huge financial burden that it puts on, you know, families who cannot work.
• 27:15
  SPEAKER_03: There were families traveling two and three hours away.
• 27:18
  SPEAKER_03: You know, we are grateful that we live in Columbus.
• 27:21
  SPEAKER_03: Our jobs, you know, were flexible, but not everybody has that same thing.
• 27:26
  SPEAKER_03: And so it can be, and that token for couples and things of that nature or single people, it can be a huge financial burden because there was times when we were in the hospital for, you know, a couple of weeks and things I mean, and someone needed to be there with him.
• 27:42
  SPEAKER_03: And we had a great family support system, but we also acknowledge the fact that other people do not.
• 27:47
  SPEAKER_00: Yeah.
• 27:48
  SPEAKER_00: I think one of the other things that was uh something that was difficult for Renee to wrap her brain around.
• 27:56
  SPEAKER_00: Uh she was trying to go through and connect with some of those other families that you know we might have interacted with in the coffee room, you know, while we're in the hospital.
• 28:07
  SPEAKER_00: And I remember telling her, I was like, listen, you are the type of person that likes to get emotionally attached to people.
• 28:14
  SPEAKER_00: Please don't do that here.
• 28:16
  SPEAKER_00: And she couldn't understand why she's like, you know, this is great, we can, you know, share this stuff.
• 28:20
  SPEAKER_00: And I go, I need you to understand, our kids going home on Friday.
• 28:25
  SPEAKER_00: Some of these other parents, they don't know when their kids are going home or if they're going home.
• 28:30
  SPEAKER_00: And I'm like, You got enough stuff going on right now.
• 28:33
  SPEAKER_00: Let's not try to lump that all in together.
• 28:37
  SPEAKER_00: And she, you know, was just like, yeah, whatever, you know.
• 28:41
  SPEAKER_00: And sure enough, you know, she started to interact with some of the other parents, and then she was like, I get it now.
• 28:47
  Keri Croft: So it's a lot.
• 28:51
  SPEAKER_03: Now, how much does Will remember?
• 28:54
  SPEAKER_03: He remembers some, but not a lot because he was three.
• 28:59
  SPEAKER_03: He remembers going into the hospital, he remembers the um accessing the port.
• 29:05
  SPEAKER_03: Uh, that was very traumatic for him.
• 29:09
  SPEAKER_00: Pretty much anything with the trauma.
• 29:10
  SPEAKER_00: Uh, it uh it hard-coded stuff for him.
• 29:13
  SPEAKER_00: So we have a very dark sense of humor compared to normal people.
• 29:18
  SPEAKER_00: So um he remembers like getting a catheter and stuff like that.
• 29:23
  SPEAKER_00: So we will joke around when he's like, I'm not feeling good.
• 29:26
  SPEAKER_00: I'm like, do we need to go to the hospital and get a tubi?
• 29:29
  SPEAKER_00: And he's like, no, I'm good.
• 29:30
  SPEAKER_00: I'm good.
• 29:31
  SPEAKER_00: I was like, good, good.
• 29:32
  SPEAKER_00: So let's let's power through them.
• 29:35
  SPEAKER_03: Because and I think one of the things you don't realize, I I was just naive, is if you're getting chemo or any kind of medicine for one day, it's a whole day affair.
• 29:47
  SPEAKER_03: I just thought you walked in, oh, they give you the medicine, they got you prep.
• 29:51
  SPEAKER_03: It's like, no, they have to do your blood work, they have to make sure your counts are good.
• 29:55
  SPEAKER_03: They, for him specifically, it makes sure his he was urine output was good enough.
• 29:59
  SPEAKER_03: Because if you're not outputting urine good enough, then some of those medicines they can't stay in you.
• 30:05
  SPEAKER_03: Like they can do severe damage because they're trying to flush it out.
• 30:08
  SPEAKER_03: They give it, but they have to be flushing it out.
• 30:10
  SPEAKER_03: And so the one time his urine output was not good enough.
• 30:13
  SPEAKER_03: So then they had to do the cath, and we were there, and then the pharmacy was backed up with medicine.
• 30:17
  SPEAKER_03: So, like it would be from 7 a.m.
• 30:19
  SPEAKER_03: to 7 p.m.
• 30:21
  SPEAKER_03: I just because of whatever was going on and things were backed up.
• 30:24
  SPEAKER_03: And I think that that's one of the things that I just did not know.
• 30:28
  SPEAKER_00: We had a couple of instances that ended up bleeding all the way into midnight essentially from like a 7 a.m.
• 30:35
  SPEAKER_00: appointment.
• 30:36
  SPEAKER_00: And um I I do remember one of those uh times where he wasn't peen enough, and uh he was really frustrated with having to be there that day.
• 30:50
  SPEAKER_00: And he's a three-year-old, so he's not able to, you know, vocalize a lot of his frustrations or concerns.
• 30:57
  SPEAKER_00: And uh his mindset was okay, I'm gonna hold my pee because that is the one thing I can control.
• 31:05
  SPEAKER_00: And by this point, he has an entire bag of IV fluids in him.
• 31:09
  SPEAKER_00: So his face, his arms, everything swollen.
• 31:12
  SPEAKER_03: Because they were trying to give him fluids so that they could get output numbers.
• 31:15
  SPEAKER_00: And uh, like I remember the nurse, she's like, I can't get through to him.
• 31:20
  SPEAKER_00: Like, I need you to talk to him.
• 31:22
  SPEAKER_00: And I went in there and I was like, Look, buddy, you remember the catheter?
• 31:26
  SPEAKER_00: And he's like, Yeah.
• 31:27
  SPEAKER_00: And I'm like, he's got it right now, he's gonna do it.
• 31:30
  SPEAKER_00: Like, you need to pee or it's it's happening.
• 31:33
  SPEAKER_00: And I remember he was like, No.
• 31:35
  SPEAKER_00: And I was like, just so we're clear, that nurse is not messing around with his game of chicken, like you're gonna lose.
• 31:42
  SPEAKER_00: And he, you know, as soon as they like pinned him down, he was like, I have regrets.
• 31:48
  SPEAKER_00: And but that's just like some of the you know, anecdotal stuff of uh a kid going through this, you know, you remember all the weird stuff.
• 31:59
  SPEAKER_00: And fortunately, the reason why we can't remember the weird stuff is because we had a positive outcome.
• 32:04
  SPEAKER_01: Yeah.
• 32:04
  SPEAKER_01: Yeah.
• 32:05
  SPEAKER_00: So I I I I remember him just walking through the place like he owned it, you know, as a three-year-old.
• 32:12
  SPEAKER_00: He would just walk behind the counter, help himself to the drawer of like goldfish.
• 32:15
  Keri Croft: I mean, there's upside.
• 32:17
  SPEAKER_00: Well, there is that's the upside, you know, snack room.
• 32:20
  SPEAKER_00: It was interesting when like there would be new staff though that didn't know him, and he would just be like, Hey, how's it going?
• 32:26
  SPEAKER_00: And, you know, they're like, Who is this kid?
• 32:30
  SPEAKER_00: And you know, one of the other nurses would be like, Oh, don't worry about him.
• 32:33
  SPEAKER_00: He's fine.
• 32:33
  Keri Croft: That's great.
• 32:34
  Keri Croft: That is great.
• 32:35
  SPEAKER_03: I think um, as he gets older, he will realize the severity, but I think the mental capacity of a three, and now he's nine, you don't really understand the severity of it.
• 32:48
  SPEAKER_03: Um, but he remembers the experience, uh, you know, whenever whenever they go to school, sharing one unique thing.
• 32:56
  SPEAKER_03: He's like, I only have one kidney.
• 32:58
  SPEAKER_03: And so it's, you know, I think he has brought light and kind of brought his own little sense of humor into it.
• 33:05
  SPEAKER_03: Um but also, you know, when he goes to have kids and things like that, I think that it will there'll be more thought about it and more, oh wow, this was really serious.
• 33:17
  SPEAKER_03: And, you know, we took pictures, we took videos.
• 33:20
  SPEAKER_03: I mean, it's kind of hard because I'm like, oh gosh.
• 33:23
  SPEAKER_03: But I that was his life for a year and a half.
• 33:25
  SPEAKER_03: I don't want it to be this year and a half didn't exist.
• 33:29
  SPEAKER_03: I want you to look back and say, wow, I accomplished all these things.
• 33:33
  SPEAKER_03: I beat cancer.
• 33:34
  SPEAKER_03: How proud you should be.
• 33:36
  SPEAKER_03: If you can beat cancer, you can do anything.
• 33:38
  SPEAKER_03: That's what I tell him.
• 33:39
  Keri Croft: That's a great, that's a great way to do it.
• 33:42
  SPEAKER_00: With her being a science teacher, too.
• 33:44
  SPEAKER_00: She uh she has like photos of all this stuff too.
• 33:48
  SPEAKER_00: And she'll she'll bring them out.
• 33:50
  SPEAKER_00: She'll be like, Do you want to see what a cancerous kidney looks like?
• 33:53
  SPEAKER_00: And I have to remind her, I'm like, we're eating.
• 33:56
  SPEAKER_00: Like, let's let's dial it back.
• 34:00
  Keri Croft: Let's wait till after dinner.
• 34:01
  SPEAKER_03: So this is just a funny side note.
• 34:03
  SPEAKER_03: So when he uh testicular cancer, um, the doctor, you know, they removed it.
• 34:09
  SPEAKER_03: And and so as they're going in, I'm like, before they go to surgery, I'm like, can you take a picture of it?
• 34:13
  SPEAKER_03: I want to see what it looks like.
• 34:14
  SPEAKER_03: And he's like, Uh, I think I might need to ask him.
• 34:16
  SPEAKER_03: I was like, oh, we'll be fine with it.
• 34:18
  SPEAKER_03: But I'm like, this is what it looked like.
• 34:20
  SPEAKER_03: I was like, oh my God.
• 34:21
  SPEAKER_03: I I'm just I'm like, then I totally was joking, but I was like, can you like put it in a jar?
• 34:25
  SPEAKER_03: Can you keep it like in the souvenir?
• 34:28
  SPEAKER_00: Meanwhile, the surgeon's just like staring at her, like he's like, okay, we got other issues here.
• 34:31
  Keri Croft: Let's bring it here.
• 34:32
  Keri Croft: Where's the lady?
• 34:33
  Keri Croft: Okay, where's the psych ward?
• 34:35
  Keri Croft: Okay, great.
• 34:36
  Keri Croft: Right.
• 34:36
  Keri Croft: No, but I mean if you're a science teacher and you're into that shit.
• 34:39
  Keri Croft: Yeah.
• 34:39
  Keri Croft: Yeah.
• 34:40
  Keri Croft: And you're into true crime.
• 34:40
  Keri Croft: So you're just, you're one of those people.
• 34:42
  SPEAKER_00: Oh yeah, it does not face it.
• 34:43
  SPEAKER_03: No, we donated the kidney, they had to do the pathology, and then we donated the kidney for uh research and things like that.
• 34:49
  SPEAKER_03: But I'm like, what did they're like, well, we can do something with that.
• 34:52
  SPEAKER_03: Like, well, wouldn't it be funny to like have it up on a jar and a little bit of fluid?
• 34:55
  SPEAKER_03: I'm like, no, I'm like, one of our kids would knock it down and we'd be like, your mom's on the floor.
• 35:03
  Keri Croft: Like, oh my god, I can only imagine what goes on at your house.
• 35:07
  Keri Croft: I love this glimpse into you, but it's hilarious.
• 35:10
  Keri Croft: You have your own little sitcom.
• 35:12
  Keri Croft: Oh my God.
• 35:13
  Keri Croft: But in all seriousness, you've been through a lot and you've handled it with, you know, I'm sure some grace, some anger, some all of it, but you've done it, you're getting through it.
• 35:24
  Keri Croft: And I appreciate the hell out of you guys sitting down and being so vulnerable.
• 35:28
  Keri Croft: And I'm so happy Will's doing well, and clearly you're doing better.
• 35:32
  SPEAKER_00: I'm all right.
• 35:33
  Keri Croft: You're right.
• 35:33
  Keri Croft: You're mid.
• 35:34
  SPEAKER_00: So I I just had surgery for mine.
• 35:36
  SPEAKER_00: I didn't have to go through camera radiation.
• 35:38
  SPEAKER_00: So again, our dark humor, she calls it fake cancer.
• 35:41
  SPEAKER_00: So she's like, You didn't have real cancer.
• 35:43
  SPEAKER_00: Calm down.
• 35:43
  SPEAKER_00: Yeah.
• 35:44
  Keri Croft: Uh-huh.
• 35:45
  Keri Croft: And he's like, Yep, banter, the husband and wife thing.
• 35:48
  Keri Croft: Never gonna be.
• 35:49
  SPEAKER_03: Well, now I'm trying to.
• 35:50
  SPEAKER_03: He's refusing a colonoscopy.
• 35:52
  SPEAKER_03: His doctor said, You need to be getting your colonoscopy.
• 35:55
  SPEAKER_03: You have to get it.
• 35:56
  SPEAKER_00: I'm starting with an endoscopy.
• 35:57
  SPEAKER_03: But I say get it all done at once.
• 36:00
  SPEAKER_03: Like, he doesn't want to do the boo.
• 36:02
  SPEAKER_00: I'm starting with the endoscopy.
• 36:04
  SPEAKER_00: Is that okay?
• 36:05
  SPEAKER_00: The colonoscopy comes later.
• 36:06
  SPEAKER_00: So he doesn't, he doesn't she's trying to cram it all into one day.
• 36:10
  Keri Croft: Because we have to scan you and make sure her boo's okay.
• 36:12
  SPEAKER_03: Yes, that that's exactly the dermatologist.
• 36:15
  SPEAKER_03: Like, I make all of his appointments, and the dermatologist is like, Why are you here?
• 36:18
  SPEAKER_03: He's like, Well, my my wife may be coming here.
• 36:20
  SPEAKER_03: I'm like, you get a yearly exam, they check over.
• 36:22
  SPEAKER_03: I was like, This one mole looks suspicious and looks sus.
• 36:25
  SPEAKER_03: Check it out.
• 36:26
  SPEAKER_03: Like so Oh my God, I love it.
• 36:29
  SPEAKER_03: I love you too.
• 36:30
  SPEAKER_00: And every time I explain that to like the doctor and like the uh assistant in the room, you know, I'm just standing there in like a paper gown, essentially, and they're like, Tell us why you're here today.
• 36:40
  SPEAKER_00: And I'm like, I don't know.
• 36:42
  SPEAKER_00: My wife booked this, I was told to be here.
• 36:44
  Keri Croft: I just do what I'm told.
• 36:45
  SPEAKER_00: Right.
• 36:45
  SPEAKER_00: And they're like, Well, do you have any suspicious things you need us to look over?
• 36:49
  SPEAKER_00: And I'm like, I don't know.
• 36:50
  SPEAKER_00: What did the notes from my wife say?
• 36:51
  Keri Croft: Like every everyone needs a room in their life, right?
• 36:56
  Keri Croft: Yeah, yeah.
• 36:57
  SPEAKER_00: When the when the doctor did, you know, uh, from my cancer diagnosis, he was like, you know, your wife saved her life.
• 37:03
  SPEAKER_00: And I was like, Do you have to say that while she's in the room?
• 37:05
  Keri Croft: That way, right?
• 37:06
  Keri Croft: He's indebted to you forever.
• 37:07
  SPEAKER_03: That's what I say.
• 37:08
  SPEAKER_03: I'm like, whenever he's like mad at me, I'm like, honey, remember, I saved your life.
• 37:12
  Keri Croft: Like, yeah, she did.
• 37:14
  Keri Croft: That's a great note to end on, actually.
• 37:16
  Keri Croft: She saved your life.
• 37:17
  Keri Croft: Yeah.
• 37:18
  Keri Croft: So truly.
• 37:19
  Keri Croft: Thank you guys so much for coming in.
• 37:21
  Keri Croft: I really appreciate it.
• 37:22
  Keri Croft: Helping us raise awareness for cancer-free kids.
• 37:25
  Keri Croft: And again, let's bookend this with a lemonade stand, shall we?
• 37:28
  Keri Croft: August 2nd, 11 to 1.
• 37:29
  Keri Croft: There will be adults running around in lemon costumes.
• 37:32
  Keri Croft: There will be music.
• 37:33
  Keri Croft: Oh, there will be a friendship bracelet bar sponsored by Fortuna Bank.
• 37:37
  Keri Croft: Forgot about that one.
• 37:39
  Keri Croft: I mean, there's just so much coming out.
• 37:40
  Keri Croft: There's just so much coming out of the Wilbur.
• 37:42
  Keri Croft: It's gonna be, it's gonna look like a festival on Lane.
• 37:44
  Keri Croft: Yeah, I think the Popo, hopefully the UA Popo will be called.
• 37:47
  Keri Croft: That's my goal, is for the Popo to be called.
• 37:49
  Keri Croft: It's that much of a spectacle.
• 37:51
  Keri Croft: Just kidding.
• 37:52
  Keri Croft: Kind of.
• 37:53
  Keri Croft: And if you're still out there following your girl, follow me on YouTube, Spotify, Apple, or wherever you get your podcast.
• 37:58
  Keri Croft: And until next time, go to Cancer Free Kids, come to the lemonade stand and keep moving, baby.