Childhood Cancer Diagnosis

September is Childhood Cancer Awareness Month! To recognize this month, Melanie shares a story of resilience of navigating the journey of your young son receiving a cancer diagnosis, the path the recovery, and how her and her family has grown and come together. As with all of our story of resilience, those who share their story give us a glimpse of into their own personal lives and teach us how we can become resilient in our life.

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Jen: Welcome to the Parents Place podcast with Hilary and Jen. Hello and welcome to the Parents Place podcast. This is not Hillary she is out for today, but yes, this is Jen, and I apologize for my voice. It's been a little bit funny the past couple of days, but hopefully you can forgive me for that. So, since Hillary is not here, we do have a guest host and her name is Nicole. And I'll let her introduce herself.

Nicole: Yeah. My name is Nicole. I've done one Co-hosting episode, so thankfully they brought me back. I do Parents as Teachers. I'm a family visitor, so I'm excited to be here with Melanie and Jen today. I love Co-hosting so bring it on.

Jen: All right, today we have a great guest. This is a story of resilience, and her name is Melanie, and she does work here with us. But we are excited to hear her story of resilience. And get to know her a little bit better. I'll let her introduce herself and then you can just go right into sharing your story.

Melanie: Ok, sounds good. Thanks for having me. I'm excited to be here today. My name is Melanie and I work here at the Family Place. I started as an intern last year and then I got hired to do kids empowered. And then now I'm over the kids' classes so I really love being here. So, jumping right into my story, this story starts several years ago, about 2015. We're going to go back to about 2015. I had four kids. Well, I have. 4 kids so. All of my kids are really close in age. I have, well, my oldest right now is 14 and then I have a 12-year-old and then I have 9-year-old twin girls. And when my twins were born, my oldest was 4. So, I had four kids in four years, so it was crazy town. Life was crazy. Really, really busy. Just purely living in survival mode. So, we're just going through life. So, 2015, Carter, who is my second, He was four years old, and he got really sick and he started having really, really high fevers, like 104 fevers that went on for days. I took him to the doctor. And they're like, hey, you're on day this and it should start getting better. Like well, you start seeing improvement in the next few days. So we went home, watched him. It didn't improve, so we kept going back and I just started getting really frustrated and feeling really hopeless, like what's going on? He's not getting better these fevers, are just really, really high.

Nicole: Did he have any other symptoms or was it just fevers?

Melanie: So, he did have other symptoms. He was really, really lethargic he, like, had his neck, was really stiff like we were worried about meningitis, that kind of stuff. So finally, after day seven, I go back into the doctor. And I'm like. This is not OK, we need to do something else. So they ran some of their tests and it was determined that what he had was called Kawasaki Disease, which is super rare, not something I'd never heard of.

Nicole: Sounds made-up.

Melanie: Yeah, I've never heard of it before and I was like, OK, but he fit all the criteria of Kawasaki disease. So basically they have to have like 5 symptoms of seven or something like that. And he had most of them. So, the only way to treat it is to go to primary Children's Hospital. So, we went down there, they follow their protocol for treating him and he was doing much better like the next day which was pretty awesome. So one of the symptoms of Kawasaki disease is that they have enlarged lymph nodes. So, he had this enlarged lymph node on his neck that just kind of stayed. And it, we watched it every time we go to the doctor to monitor it. I asked the doctor to check it and he said it looks fine. Well, after a year I kind of felt like it was growing a little bit. And so he's like, well, the doctor told me that he could refer me to it and eat an ear nose and throat doctor. So I was like, yeah, I think I'd like to go get a second opinion on this. So we went down and the doctor. Looked out and he's like, well, it's probably just a lymph node, but maybe it's a thyroid, I don't know. Let's do an ultrasound on it so he does ultrasound on it. And he's like, I still think it's a lymph node. He's like, I don't see the point in doing a biopsy and putting him through that we just need to get this out and. He told us that he believed it was 99% not. So we felt good about that. We felt good about you know he knew what he was talking about, he did the ultrasound, so we went ahead with the surgery, so it was supposed to be an hour-long surgery and after we were in the waiting room for about an hour and a half, we're like, hey, we haven't got any updates what's going on. So we asked for an update. And so they called operating room. They're like, yeah, he's doing good. It's just taking a little bit longer, but everything's doing good. So, we're waiting for whatever ends up taking 3 and 1/2 hours that he's in surgery.

Nicole: OK. Oh my gosh, that must have been so scary!

Jen: Did they come in at all during those 3 hours to give you any updates besides the one?

Melanie: Not really. Like we asked, and they just would call and they're like. Yeah, he's doing good. It's just taking a little bit more time. And so we're like. You know the so when we talked to the doctor afterwards. The way he described it. As he said he was working in really expensive real estate, meaning the area that he was working in was like he had to be so careful.

Nicole: Because it's like where?

Melanie: Just right on the side of his neck. So when he got in there they found that it was like squishing his jugular, it was like around his carotid artery. It was like wrapped in really, really important nerves. So like nerves that like control your breathing or stuff and trigger like arm movement and stuff like that. So that's why it took so long. It was so much more intertwined in in that area.

Nicole: Yeah. Oh my Gosh

Jen: Did you see any signs, like with his arms and his breathing and everything?

Melanie: No, cause it was all fine. It was just getting it taken out. He wanted to make sure, he didn't disturb those nerves.

Jen: Let me ask you another question, how do you get Kawasaki Disease?

Nicole: Yeah, I was wondering the same thing!

Melanie: Yeah, it's such a rare and newer disease. I think when he got it, they said that it had only been found like found out 40 years prior, so there's still a lot that they don't know. They don't know what caused it. They don't know if it's genetic. They don't, there's a lot of things they don’t know.

Nicole: How odd! It's not like Lymes disease where you get bit by a tick or something.

Melanie: Yeah. So yeah, so we're just kind of constantly being updated on like new things that are found out about it and. Stuff, so yeah. So yeah, we don't really know that much about it.

Nicole: So, this Lymph node was a result of the Kawasaki.

Melanie: So that's what we that's what it was believed to be. Yeah, so everything tracked with that story, right? It was a growth that never went away from the from the Kawasaki disease. So he gets it taken out when he when they were in surgery, they actually do like a cross section freeze of the cells to see like if they can tell what it is. So, they did that and the doctor believed that the cells looked normal to him. So, they sent us home. He recovered really well, we just kind of went on with our life and they said come back in two weeks. We're going to send this to pathology come back in two weeks. For his two week checkup follow up.

Nicole: And he's 5 at this point?

Melanie: Yeah. So, we go on with our life, thinking everything's great. We're glad that that's behind us in that period of time, we actually put our house up for sale, put an offer on a new house.

Nicole: Oh my gosh.

Melanie: Yeah, like life was just continuing. Like crazy life just with our kids and it just didn't stop. So, about a week and half after the surgery, I get a call from the doctor's office and they say, hey, we need you to come in tomorrow to have a checkup with the Doctor. And I'm like, OK, well, he's got an appointment later on in the week for a checkup. Like, did you not have that down? And she's like, yeah, we have that down, but we need you to come in tomorrow.

Nicole: Oh no.

Melanie: And it was at that point that I knew something was wrong. And so the next day we canceled all plans. We made arrangements. We took my other kids down to my parents house down in Utah County, dropped them off, went up to the doctor's office, and it was horrible walking into that doctor's office like it was like walking into a lion's den. Like we knew we were going in for trouble. They like whisked us right into a room as soon as we got there, like there was no check in process. Or anything it. Was just oh. Hey, you're here. Come in this room. So we go in this room and we aren't waiting for very long, and the doctor comes in and he's visibly upset like he just does not look well and he comes out, he says there's not really any easy way to say this, but we ran this through pathology and we couldn't determine what it was here at primary children, so we actually sent it off for a second opinion. And it was actually, Harvard Medical School that it was sent to, and it was determined that this was actually cancer.

Nicole: Ohh my gosh.

Melanie: So, it was they called it. So, it's most like Ewing sarcoma, which is typically a bone cancer, but this was in his soft tissue. So, which was really rare for his age that he had it, but he's like, you know, he even told us he knew that he told us 99% chance this isn't cancer. So, we have no idea at what point this became cancer or if it was a lymph node or what it was,

Jen: Or if he had had cancer the entire time,

Melanie: Yeah, we there's a lot of unanswered questions that we will ever know.

Nicole: So, when the doctor came in and told you that what like, what went through your mind?

Melanie: So it was interesting because we were completely numb, like there were not. Like you would think, maybe flood of emotions like there were no emotions. It was me, my husband and Carter was in the room and Carter was just sitting there playing with the toys. Like he could tell that something was up. But we were just shocked. The doctor had told us, he said we already have an appointment made for you at oncology. There's already been a team that's been set up that has created a plan for him like this is all going on during this time were just completely oblivious. And they've already created this treatment plan for him and stuff. So he's like, you guys can have a minute here to kind of process and then you guys need to go up there to go to your appointment.

Jen: I would need more than a minute!

Nicole: So, you're going to be going like, right from this office, you're going to go meet with them?

Melanie: We literally just found out we needed to go and meet with them

Nicole: Ohh my gosh, were you just spinning like I can't even imagine.

Melanie: Well, it was numb. We were like, there were there's no other way to describe it other than it was just shock.

Nicole: You're like going through the motions.

Melanie: Yeah, I was completely in shock. So we are like sitting there like I I'm just in that moment thinking about all these things. How am I going to deal with this? Like, is he going to die? What? What? What is my life going to look like from this? And so we leave from there. We go up to the 4th floor to oncology. And it wasn't until then that we sat down there the flood of emotions hit us. And we're sitting there surrounded by people. And like one of most vivid memories of this time was we were sitting there and a dad who was in the waiting room with his kid came over and handed me and my husband a box of tissues and it was like he was telling us, like I've been there. I know what you're going through, like, and it was at that moment, like, OK, we're not alone. Other people have gone through this. It you feel like you're alone.

Nicole: Right.

Melanie: So, we go in to meet with the doctor. She gives us all the like this is the protocol. This is the case for treatment or this is how we're going to treat if this is how you choose to do it and we're just sitting there and she's like, hey, what questions do you have? And I'm like, I just want to go and she's like, OK, well, do you want to like talk about this a little bit or something I'm like no, like I just, I want to, I don't want to do this at all.

Nicole: I'm going home.

Melanie: Yeah, like I want to go back to yesterday. I want to go back to being blissfully unaware. When my life was just great, but I mean, it was crazy, but it was fun. And she's like, yeah, I understand. Like, I'm sure she's heard that before. So anyway, it just got started. The process part of the problem with the way that the surgery had happened was the surgeon wasn't able to take appropriate margins because he didn't think it was cancer, and so he still had to go through the process because usually it's either chemotherapy and radiation or, chemotherapy and surgery or radiation. So it's usually you only have to do 2, but because that happened, he had to do chemotherapy, surgery and radiation.

Jen: So, it's kind of like we should always do biopsies.

Nicole: Yeah, they usually do, don't they?

Melanie: It's, but it's another medical procedure where you had to go under and he just was trying to prevent that from. But yeah, I think a lot of times it that was probably an error on his part to just he felt confident. It tracked with the story of the Kawasaki that it was a lymph node, right? Like nobody expected it to be cancer. Nobody did. It was really, really weird that that's what it ended up being. So yeah. So, he went through, we started nine months of treatment he had, he would go into the hospital for treatment. So, we would go down for a few days and then he had, like a week off and you'd have you'd have to go back for a few days, and like during that chemotherapy that you know, sometimes you get really, really sick. One so one type of drug would make him more sick than the other one. There were a lot of other side effects that came along with that, so chemotherapy is really hard, especially on a little kid. But we did that, but then it was amazing too, because he's just a 5 year old little kid too and he would play and we would you know, we'd make it as fun as we could while hanging out at the hospital, but it was really hard because we were away from home. I had to leave all of my other kids at home. My husband told me that he had counted and we spent like 60 nights away in the hospital. During this nine-month period and I'm like one that's never been away from my kids, you know? And so, we spend a lot of time away. And that was really hard.

Nicole: Yeah, that's why I was going to ask, like, how did it affect your other kids and your family?

Melanie: Yeah, it was. It was really difficult. It was as far as like now. The younger ones don't really remember a ton about that. They remember going and visiting their brother, but my older daughter, she remembers everything.

Nicole: Oh, that's hard.

Melanie: She remembers a lot of what went on. She knew it was scary. She knew that this was a scary diagnosis. She knew that mom and dad were really worried.

Nicole: Because she was school age, right? Like 7 is that ?

Melanie: Yeah. Yep. Yep. So she was in school, which created another issue with germs, and you know, we had to make sure that he was away from people who were sick, and especially so we would have a nurse that would come in three times a week, that would draw his blood and check his levels. And if his levels were really low, then we knew that we needed to avoid people. And if he was really, you know, compromised and he came in contact with something. We would have to rush to the hospital. Like if his if he if got a fever of like 99. We have to go to the hospital, which happened several times. He ended up in the hospital for.

Jen: Yeah, 99. That's like barely over by, what .3 over normal?

Nicole: That's where I like to be. I like to be a solid 99 like, but what are you supposed to be? 97?

Melanie: 98. 97. So maybe it was 99, maybe it was 100. I can't remember, but it was barely, like, barely, barely higher than normal, because his body had no way to fight any and so, it would send him to the hospital, and he'd be there for a few days while they ran viral panels and found out that it was like a sniffle that we would typically, but.

Nicole: Right. Yeah. Yeah. Especially if the kids are in school. Like, I swear, my kids are sick from, like, September till May.

Jen: The breeding ground.

Melanie: Yeah. So, we had to be super, super careful and this is all pre COVID, but we knew the drilling when COVID hit, yeah.

Nicole: So, with his age, he should have been in kindergarten?

Melanie: So, he was in kindergarten.

Nicole: Oh, he was and was he going?

Melanie: Yep, he was going. So, he missed a lot trying to remember. It was like 120 days of school between kindergarten and 1st grade. So, he did miss a lot of school. We did have, like, some people that came in and helped tutor him a little bit. But yeah, there was a lot of school that he missed because of it because he couldn't be around kids and. But yeah.

Jen: But he didn't have to be held back or anything. Oh, that's good

Melanie: Yeah, thankfully it was.

Nicole: Yeah, which I guess kindergarten. Is optional, right? Isn’t it?

Jen: Here in Utah, I believe it is

Melanie: I think it is, yeah. So, and his teacher was amazing and would send stuff and we did what we could and there was anyway, there's like programs that primary children's where they would help them read and stuff like that so.

Nicole: Oh, that's good.

Melanie

He didn't fall back too much because of it. But yeah, he definitely missed a lot of school because of it.

Nicole: That's so hard.

Jen: So once the chemo is done. You said he had another treatment, which was the radiation.

Melanie: So that was concurrent with the so he would do that at the same time. So yeah so radiation he had to do for 30 sessions, which was over six weeks. So he would go 5 days a week for six weeks.

Nicole: Ohh my gosh.

Melanie: And the thing is with radiation is because he was so tiny. So they have to sit so still in the machine. And they're like, there's no way a 5 year old is going to be able to sit still for this long and not move in and at all and so they're like, typically, we sedate them when they go in. Well, the problem with that is he was so tiny that if he, they told us if he were to lose 10% of his weight, that he'd have to get a feeding tube. So he was 40lbs so if he lost four pounds, well, if you're getting sedated every day for six weeks.

Jen: You're going to lose 4 pounds.

Melanie: You're going to lose weight. You're not going to want to eat. You're going to be groggy. And so we were just so worried about that. So we did everything we could. We bribed him. He was like super obsessed with little Beanie Babies at the time and stuff, so we bribed him with whatever we could. The people at the Huntsman were amazing with him, because. They don't typically work with little kids like it was rare. For them to get little kids in there. Ao they were phenomenal and he was able to do it without sedation every time. He able to create a music playlist or like, do you listen to music when you're in there and he listened to Barracuda and Eye of the tiger on repeat!

Nicole: Stop. That is so cute.

Melanie: The entire time, every time. It was so cute.

Jen: We are super blessed to have The Huntsman Cancer Center. And I had a cousin that had leukemia and was in the hospital at the same time as John Huntsman, so they became really good friends. Yeah, great.

Melanie : Yeah. Yeah, we we have amazing hospitals here in Utah. Yeah, we feel really fortunate for that, yeah.

Nicole: I'm just curious, do those songs trigger you now?

Melanie: No, because I didn't listen to them.

Nicole: OK. Do they, do they trigger him?

Melanie: No, not at all

Nicole: OK, that's good.

Melanie: Yeah, it was a positive thing for him.

Nicole: Good, good. I bet it made him feel strong and empowered.

Melanie: Yeah, it was on repeat. But yeah, I never really thought about whether it does or not, but no, he still likes them. But yeah, it was. And every time those songs would come on. He’d be jamming to the music.

Nicole: Jam out, but not too hard. Don't move.

Melanie: It's so cute, but. Yeah, so kind of backtracked, I forgot to say this. So when he was diagnosed, we kind of had this two-week period of time before we knew his prognosis. Like they had told us if it hadn't spread, he had an 80% chance of this of recovering and doing really well. If it had spread it jumped clear down to 30%.

Nicole: Ohh my gosh. Melanie. Ohh no.

Jen: To where it was probably grown for a year.

Melanie: Yeah, we don't. We have no idea. Yeah.

Jen: You would think that it would have spread

Melanie: Yeah, no idea. So, we actually had to wait 2 weeks from when we found out his diagnosis, whether or not it had spread. And those were by far the darkest two weeks of my entire life. Like I have never experienced darkness like that and it was every worst case scenario flashing through your head. Why we had to wait is because they had to do a pet. Scan which comes in. A huge trailer that moves from hospital to hospital so it was the next appointment that we got was two weeks out. So during this two weeks I'm like scheduling family pictures thinking this is the last time we're going to be getting family pictures taken and just like. Going through every worst case scenario, yeah.

Nicole: I’m going to cry! Oh, just the thought. Of like having to go through all that.

Melanie: Yeah, it was. Awful and but it was amazing how like. The things that I was worried about during that time, like I never actually had to worry about like people came through and solved those problems for me. Like the things I was worried about with my kids, childcare and stuff. Family came in and found us babysitters and paid for babysitters and it wasn't like we had meals. And stuff but it was like just the simple things that you don't even think about. Like one of the most meaningful gifts. That I received was a huge bag of paper plates. And it was it was. Like you have permission to not have to do dished. But I was like, it hadn't even dawned on me to not have to worry about that. And I'm like, thank you. Like, I just need anyway.

Nicole: Yes, because like when you're in the depths of despair, the last thing you want to do is laundry or dishes or even like showering.

Melanie: It was amazing.

Jen: But you probably don't even see. Ohh, I'll get some paper plates. I'll get plastic sliver ware, I'll get solo cups

Nicole: No, right. Because that's going to the store, another mundane thing you don’t want to do

Melanie: Yeah. And so, it was just amazing how like backtrack or go back a little bit. So, he did have the pet scan and it had not spread, thankfully, yeah. So, his prognosis was good. So, but all of those worries that we experienced in those two weeks, like it was amazing how. We just didn't have to worry about those like financially the things like that people came through and did for us like. My husband's previous employer that he hadn't even been working for anymore into the little fundraiser for him. Like just little things that we're not hard for people to do, but meant the world to us, like dropping off things for him to do while he was immunocompromised or whatever. Just little things like that. That got us for us so much.

Jen: Those times where you really find out who really cares about you and who comes to help

Melanie: And how much, how much people just want to help during that time. Speaker 2

Nicole: Yeah having that support system and it really just brings to mind like. We can just do these things for other people like you don't have to be going through cancer to really help another person you know?

Melanie: And little things make a big difference. Like I will never forget the lady that brought me those paper plates. She probably completely forgot about it.

Nicole: Yeah, I'm sure it wasn't big to her at all.

Jen: Especially cause it is like what? 7 dollars for a big bag?

Nicole: So, person who brought the paper plates. There you go. There's a shout out.

Jen: I think it also shows accepting help. Yeah. I'm. I'm not a great accepter of help.

Melanie: No, and that was really difficult. Because I wasn't either. I mean, I was a mom of four little kids and I, my husband, worked a ton of hours, and I just did it. Like I had my systems down and it was really hard to accept help. But we realized really quick that we weren't going to be able to do this by ourselves. There were certain things where I couldn't accept help, like having people stay with him at the hospital just because, like. It was interesting because there were times where, like Mother's intuition was so strong that my husband wouldn't even stay with him like he didn't trust himself, that he would pick up on things. Like there were just so many times where things would happen that I'd be like. I don't feel right about this or we would catch something. There was one time where his pick line, which was like straight to his heart had come undone and I just had a feeling I was like, I'm just gonna go check that. Like I had no other reason to go check it other than I just had a feeling. And it was like bleeding.

Nicole: Oh my gosh!

Melanie: Like enough little things like that where my husband's like. No, I you've got to being there with him at these overnight stays like there was times where, like the chemo didn't get hooked up all the way and so. Like anyway it was. Things that you know it would have got caught eventually, but I was able to catch it right away. Cause I was so in tune with what was going on with him and what he was feeling and stuff. Yeah, that was interesting part.

Nicole: Did that have an effect on you?

Melanie: I did not realize what an effect it had on me until afterwards, but yeah. I really put on a strong face during it. I know a lot more now about letting myself feel emotions than I did then. But I held a lot of it in during that time because I didn't feel like I could express those feelings, but yeah. It definitely is draining to be a caretaker of anyone. In any situation.

Jen: Taking care of my sister when she had her gallbladder. I had that thought of it's so hard to be a caretaker. And people are. And no negativity towards people who go to the person who needs the care, and that's who they pay attention to. And then here's you as a little caregiver left out here by yourself. So, I feel like that's one thing that we really need to work on is recognize the caregiver. I mean, and my sister was just gallbladder, but it was a bad gallbladder situation. And so it was exhausting. And it's hard it's exhausting physically and emotionally.

Melanie: Yeah, check on those caregivers because they're probably not OK.

Jen: I feel like I'm just thinking like you're probably just in you know cruise control. I'm just going. And then when you stop, you said you didn't realize because then when we stopped after going through cruise controls. It's like you just let everything go and now you're like, Oh my gosh, my body was in so much stress.

Melanie: There was a lot of work that had to be done after that on myself to kind of understand. Because, yeah, I mean it's trauma on everyone in in the family at that time.

Nicole: Those are that. Big T- trauma too. Like I stubbed my toe and I'm like, that's it for me.

Melanie: But it is. It's not just the person that's sick. Everybody is directed in the family; it completely changes the dynamic of your family. And you have to have your parents gone.

Nicole: So what? If anything, which I'm assuming that there was somethings but what did you guys do after? I mean I don't know. Sorry. Maybe you're not done with your story, but what are some things that you guys use for coping like during and after?

Melanie: So I think one of the biggest things was accepting that help allowing other people to help us through that stuff because we just couldn't do it ourselves so. Letting other people help us was huge. We can't take it all on and there would have been a lot more if we had. I don't know there was there was a lot of growth as a family that happened during that time that we had to realize like how to rely on each other. You know the relationship between me and my husband and how we were going to, how that dynamic was going to be. How we were going to handle this big situation and how our roles were. Kind of changing a little bit. So yeah, as far as coping. I don't know. We kind of were just living life and going, going through the motions. It was after the fact that I think a lot of it, the coping kind of came in. Into play after the fact, we were able so he was able to do a make a wish trip.

Nicole: Nice. So, I was going to ask if. You got to do one

Melanie: Yep. So, he got to go, he chose. So, he loves animals and he was into all sorts of different animals. But at the time he was super into manatees. And so he wanted to go to Florida to see manatees. He wanted to swim with manatees that that wasn't really we couldn't really swing that one. But he also wanted to go to Animal Kingdom. So, we got to go down to Florida and stay at a place called Give Kids the World. And it is the coolest place in the world. It's amazing and got to go to Disney World. And so that time is kind of meant for healing, for your family. It's just a time where you can just go and forget the rest of your responsibilities . Set it aside. And it was amazing. Like I get chills thinking about it, yeah.

Nicole: I have. I don't know where the camera is but chills.

Melanie: Anyone we has been there knows exactly what I'm talking about, like it is another experience that is not of this world, like it is amazing.

Nicole: Do you I I'm gonna ask it. Do you get to skip line?

Melanie: Yeah we do

Nicole: Oh Hallelujah, yeah. You have to.

Melanie: Yep, there were some perks. That came with going being a wish kid. One of the cool perks which I don't really talk about a ton. But they actually have a special room at Disney World called the Genie Room. And it's specifically set aside. You have this room all to yourself for as long as you need it for, and like that was one of my most memorable experiences about that. That because we seriously just got to go sit in this crazy theme park in this almost like sacred space in Disney World. It was amazing.

Nicole: Oh my gosh.

Melanie: Just like to be together as a family have a respite from a crazy day, but yeah.

Jen: Was there a genie there grant your wishes while you were there?

Nicole: I hope so

Melanie: Yeah

Nicole: Really? I mean not real genie, but yeah.

Melanie: I mean, we got to skip lines. But we. It was. It was amazing. It was such. It was definitely a once. In a lifetime experience, it was amazing.

Nicole: That’s cool. That's cool that they do that. because I know most kids, that's what they. Yeah, they choose right? Yeah.

Jen: Yeah, that's what’s my cousin did. She did Disneyland and Disney World. Well, that's because she was friends with John Huntsman, and he just gave him their private plane.

Nicole: Ohh my gosh. John Huntsman, if you're hearing this, we all want to be your friend,

Jen: John Huntsman has passed

Nicole: Well, he still might hearit

Jen: But yeah, the Make a wish foundation is great.

Melanie: Yes it is a great foundation. Definitely. I mean, it is healing for a family to get to go do that after afterwards. For a year I mean. Well, it was nine months, but basically a year of just constant stress and just to let it all go and everything's planned for you, you don't have to worry about meals or anything it was It was really, really great.

Nicole: And I'm sure those manatees just. Understood the stress too. They're just so cool I love them.

Jen: And they are just so calming

Nicole: They are so calming.

Melanie: It was pretty cool he didn't get to swim with them, but maybe someday.

Nicole: There you go. Did you guys were you able to do therapy or like, was there anything like that?

Melanie: So while he was in the. Hospital so primary children's has amazing programs and they were they came in. While he was in treatment and they would do art therapy, they would do music therapy, animal therapy like all sorts of things. It's really, really great. Things we have there. We didn't go through therapy during the time that we were going through that personally. We've we all have since just kind of to deal with that and understand that what we were going through actually was a trauma because when you're going through it, it's just life, right.

Nicole: Yeah, you're just getting through it.

Melanie: Yeah, we just experiencing it day by day as it goes. And then after the fact you're like, oh, that was really hard. But you know, even and people would say like, oh, you're so strong and stuff going through it, but it's like you don't have a choice when it's your child, you're going through that, you just do it.

Nicole: Right. You have be strong.

Melanie: Yeah, there is no other choice.

Nicole: But like Jen said, like when you stop, that's when I hit. That's when I started therapy, too, was COVID I like. I sat down and, like uh oh

Jen: But so, with all of those therapies, like the art therapy and everything. So my mind goes to like Ching, Ching, Ching. And I would hope that are you aren’t charged for all of those things throughout that process?

Melanie: I don't think so. I think it's just part of treatment that that's there honestly I don’t remember

Nicole: She didn't look at the bills. No, that would be too scary. Ohh boy.

Melanie: That would be a whole other podcast

Nicole: The whole time like. I hope that fundraiser was a lot.

Jen: I can't imagine I would, especially primary children's where they get so much help from outside sources, but it's kids.

Melanie: I'm not sure. Yeah. Fortunately for us, we were very blessed to have good insurance during that time, so like we thankfully aren't still dealing with medical bills. But yeah, I know that that's not the case. For everybody. But yeah, I'm not exactly sure on that one.

Jen: I was just trying to think of primary children's as a nonprofit. And if they are, I'm sure they write off a lot of stuff for people that are going through things

Nicole: They are aren’t they?

Melanie: I don’t know

Nicole: I don't know, I'm making that up. To our listeners, I'm usually wrong so.

Jen: So how are your girls now, after all? Well, how are all of your kids?

Melanie: So yeah, we're doing so good, so. My oldest is in high school now. Carter is in middle school. He just started middle school and then the twins are in 4th grade and everybody's doing really great. Like, I feel like we're thriving. It's, you know, we've. We've moved past the craziness of having to take care of all of the needs of little children all the time, and they could. Start doing things on their own. But yeah, we're doing really well. I think that you know, like I talked about a lot, that I would never wish this experience on anyone. But the things that like the way that our family grew during that time, like I wouldn't take that away for anything like the way that I grew personally during that time, like I wouldn't be where I am today without having those experiences like. It changed me as a person for the better like it showed me that like there was a higher calling for me that this is what led. Me to go back to school. This is what led me to be doing what I'm doing now, working with people who have experienced other traumas, and I really feel like with a lot of these experiences that people have like in the stories of resilience like. To kind of understand like, why did this happen to me, it helps me to think like if I can help somebody else going through this like it was, it was worth it. You know so yeah; our family is doing really great and it you know. We grew as a family during that time, which I know it doesn't always happen. For every family either. Because it is so hard.

Nicole: I going to say like I've, I've known families that break up because of it.

Melanie: Yeah, it is very, very hard, but thankfully we have really great support network that was there to help us and got us through it.

Nicole: What about reflecting back with Carter? Like what are his reflections from the time?

Melanie: So thankfully he was really young. He doesn't like talking about the hospital, he tells me now that like it makes his tummy feel weird talking about it. Maybe that's just his way of expressing the trauma that he's had, but he's so resilient too, like he's just tough like he comes back from things. He knows that he did a hard thing like he knows the stuff. He went through. He overcame it. Like we love every time like he was filling out some papers for school, like cool things about me. And every time we write I kicked cancers butt. Yeah this is this is a huge accomplishment

Nicole: Did he get a medal? I feel. Like he should have a medal.

Melanie: Ohh he had awards. And then they got to like ring the bell and stuff. So that's, that's fun. He's got the badge of being able to say that, you know, he did that. He bought that. So yeah.

Nicole: What? What his follow up care been like.

Melanie: Yeah. So we're always like, so right after we had lots of scans. It was every like 3 months, then six months or whatever like that. So now he's actually five years out. This type of cancer, they say after five years of no return of disease, that he's not at any more risk of having it returned than anyone. So, he's that's great. That's amazing. There's always a risk of secondary cancers that come with the radiation and the chemotherapy that he has. So, we will always do checkups and stuff like that. Yeah. So, like, with radiation, there's like, skin cancer type thing where it was on his neck, like we did things to prevent damage to his thyroid. But that was a huge risk. The biggest side effect that we're dealing with right now is his teeth because it like radiation, was done on his jawline that roots haven't grown in. So we're kind of dealing with, like, oral surgery right now having to have some teeth work done. But that's like the worst side effect.

Nicole: I’ll Take it right.

Melanie: So like I will take. That over anything else, there's so many other things that can happen. But yeah, other than that, he's just living his life like well, no, no other side effects. I mean, yeah, we'll just always watch closely to things that he just in fact yesterday had a well child check and he's doing great. He's doing fantastic, just like any other 12 year-old.

Nicole: I didn’t know any of this about your family, Melanie.

Melanie: Really?

Nicole: No

Melanie: I know it's funny because it was like so prevalent in my life when it was going on, but. It's like almost. Like a different lifetime ago that that all this happened but.

Nicole: Yeah, you guys are all different people now.

Melanie: For sure! It changes you.

Nicole: Yeah. When people say you could do hard things, you're like “I know and I did it! So I've got to pass for the rest of my life.

Melanie: Oh, I hope. So that'd be nice.

Nicole: I think that's how. It works, yeah.

Melanie: That would be really nice. Let's not do any more hard things.

Jen: Right. Yeah, I think it's nice to know that you can do hard things though. But we also need to remember that we don't know everyone's story. Yeah, and so you know, you've got to give people grace when you don't know what's going behind their closed doors.

Nicole: Like I talk to you almost every day and I had no idea.

Jen: Yeah, people who want to share and those who don't and.

Melanie: Well, and it's not what. It's a secret. It's just kind of like ingrained in the fabric of my life like and it's not so much at the forefront. But it's just kind of part of who I am.

Nicole: Yeah. But I love that. Like we just don't know. And we need to be kind and give people some grace because we never know.

Melanie: Yeah, it’s true. There's everybody's got a story.

Jen: Well, I want to thank you so much for coming and sharing your story and being vulnerable with us, that is always hard thing to do but we appreciate it.

Melanie: Thanks for having me.

Jen: We appreciate you coming today and listening and we. Hope to have you back this next week and we will see you then.

Thank you for listening to the Parents Place podcast. If you would like to reach us, you can at parents@thefamilyplaceutah.org or you can reach Jen on Facebook, Jen Daly – The Family Place. Please check out our show notes for any additional information. Our website is TheFamilyPlaceutah.org if you're interested in any of our upcoming virtual classes, we'd love to see you there.

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