David Heflin (00:01.666)
Well, I to welcome you back to In the Seams and we're excited to have a guest today, Tveen Verano. And we were connected through some mutual connections, particularly Lara Silverman, who was on this show a couple of months back. And so I'm going to also include that show again in the show notes, the link, so people can go back and listen to that. So I'm very happy that we got connected through her, Tveen and

First of all, just welcome to the show. We're glad to have you.

Tveen (00:33.549)
Thank you, thank you for having me. I'm honored to be here.

David Heflin (00:37.794)
Well, what brings you here and we'll say also for the sake of our audience is certainly not an easy topic. It is something that as you were sharing earlier, just before we went on, you know, on air, it's the kind of topic that, you know, it's, hard to listen to as a young parent until you've kind of gone through something like what you've gone through. And I know there are people who will hear this podcast who have had a child who had a cancer diagnosis. And that's what you.

what you had to deal with, you and your family. I believe he was two years old. Is that correct? When, when that started.

Tveen (01:11.415)
Yes, it was like two and half, yeah.

David Heflin (01:14.446)
And that was not that long ago. I mean, we're talking, what, 2024 when that started? Is that correct? Okay.

Tveen (01:20.333)
Yes, September 2024.

David Heflin (01:24.334)
OK, well, we want to share your story. I want you to share your story in part because I know it will bless people who gone through a similar thing. We also have others that are listening who maybe their kids don't have cancer, but they're going through some kind of childhood chronic illness. And, you know, that brings a lot of difficulty and pain to the family as well. And so I know this your story will be an encouragement, not because anybody would have chosen that.

kind of story, but because God was with you in it. so I just want to begin, we'll do a little before and after here. Tell me a little bit about your life in 2024. So before September of that year, what did ordinary life look like in your home? And you had started homeschooling too. So kind of what were you most excited about as you started homeschooling?

Tveen (02:17.229)
Yes, so before 2020, well before September, actually we did decide to homeschool that year, but even before that in January of 2024, I actually had a miscarriage and then in March I had another miscarriage. And so already that year started off pretty heavy for our family. Already that year I was like, what, why? Like, you know, I mean, I maybe took it for granted, but we had had three kids without many.

I I had a high risk pregnancy with my first, but nothing to cause any alarm. We had three healthy babies or so I thought. And the miscarriages were just something that really broke me down.

through all of that, we had already kind of talked about homeschooling for a few years and I was just like, you know what, I want to bring the kids home. It's now or never in a way. The older they get, the harder it might get. And so my husband was on board and we decided that May to bring the kids home to homeschool. So my daughter Emma was going into the second grade and then my daughter Lily was going into kindergarten. And then Alex was two years old, just a happy two year old kind of.

joining the party when he felt like it. That summer of 2024, we went to Mammoth with our really close friends. Alex was hiking six hours a day, running around. And we had just started homeschooling three weeks before his diagnosis. So three weeks before his diagnosis, I finally started living that like dream life. I had homeschooling on my mind for three years before we were brave enough to do it, you know? And it was three weeks of just this like quote perfect homeschool.

routine and things like that. I'm also a registered dietitian so I had my own practice, my own business. I would coach women through nutrition and faith-based mindset work when it comes to their health and renewing their mind around food and health. I was very passionate about that as well. So before this, things looked pretty normal and boring maybe a little bit as a family of five but I, you know, after September I realized how much I appreciated boring so much after what happened.

Tveen (04:17.431)
with my son, so yeah.

David Heflin (04:19.694)
Well, it sounds like life was going, if boring, least going well, right? And healthy kids, a job that you felt passionate about. And your husband, what's his name?

Tveen (04:24.823)
Yes,

Tveen (04:33.621)
His name is Jerusalem. His first name is Jerusalem. I call him Buskin. That's his like, Armenian middle name. But yeah, so he's a civil engineer. He works from home as well ever since 2020. You know, it turned into like a I'll work from home for two weeks. And then he's so he's much home now. But you know, we love being home together our family like we loved being home. So homeschooling just felt like a natural extension of that. And all five of us were I remember our first day of homeschooling, we had an earthquake in California, which

David Heflin (04:36.536)
Okay.

okay.

Tveen (05:03.349)
often happens. And so my husband was an engineer did this whole like little thing for the kids under the table all about earthquakes and how the earth shifts and what caused an earthquake. So we were really loving being home like we're a very tight-knit family and we really appreciated those slow ordinary days at home together.

David Heflin (05:23.832)
Right. Well, things, as you already alluded to, did not stay boring. you know, things started to change in September. And I just for the audience's benefit will mention I've listened to your story on another podcast and I know it involved. I started with some of your family getting COVID. Is that correct? Okay. Tell us what happened there.

Tveen (05:46.765)
Yes, yes. My husband, yeah, so it started with my husband. He tested positive September 2nd for COVID.

And as as covid works, you the next day my daughter's both tested positive and then the following day my son and I tested positive and we had all gotten sick before and so I was just kind of letting it run its course. My daughters got over it in about like eight hours. Like he literally like got over it so quickly. But Alex after five days of a fever, he was not getting better. He stopped eating. He stopped drinking. He stopped walking, which like I said a month prior we were hiking in Mammoth with him and going to the beach and all these things.

David Heflin (06:10.306)
Yeah.

Tveen (06:24.815)
He was not himself. had 102 fevers, even with Tylenol, Motrin, you know, all of the things we do to manage fevers. And so I actually took him into urgent care and then a hospital by us because urgent care said take him to the hospital. Five days is abnormal for the fever. And they told me they just gave him fluids because he hadn't drank, you know, his blood work came back that he was dehydrated.

And then they just drew me a clock and they said, give Tylenol at noon and give Motrin at three and give Tylenol at six. And I remember just staring at the nurse like, I've been doing that for days and I know something's going on. This is not how my son acts, you know? But I went back home and I did the Tylenol-Motrin thing. And then the next day our pediatrician said, I see that Alex was at Huntington Hospital.

David Heflin (07:02.509)
right?

Tveen (07:14.957)
I want to see him. You should know post ER visit she wanted to see him, which thank God. And I will just say we had switched pediatrician a year ago and I think that's that was a God thing that we switched to this pediatrician a year ago. And so she she saw us in office and let's remember I have covid too. So I'm like I'm exhausted. He's exhausted. And so I'm sitting in her office wearing our masks and I told her I was like I can't even put him down. He won't even let me put him down. And she said well what happens when you put him down? And I laid sat him down or I stood him up. He's two and a half and he

limped twice, screamed and fell to the ground. And she said, I don't want to scare you, but a limp with a fever, that's like a red flag for leukemia. We first saw leukemia. Ended up not being leukemia, but she said, you my husband's an oncologist at CHLA and I think you need to go get seen at CHLA just to rule it out. Just so we know what we're dealing with.

David Heflin (07:49.038)
Goodness.

Tveen (08:07.209)
And I remember frantically texting my mom and mother-in-law that I'm driving Alex to CHLA and this is what the pediatrician said. And my mother-in-law was like, I only pray to God she's wrong. I pray to God she's wrong. And my mom met me at CHLA, my husband, they even said, you know, this is just a bad case of COVID. Why would your pediatrician scare you? There's no way this is cancer. And the doctor there actually said, we see kids much sicker than your son at this hospital. Like, I think he's fine. Yeah.

David Heflin (08:33.421)
Wow.

Tveen (08:37.353)
It's just, you know, now I know on the other end of things that childhood cancer, it's not the first thing a doctor thinks of. It's not the first like differential diagnosis, right? And so I do understand why they didn't really jump to cancer because he was testing positive for COVID. His lab work was showed inflammation markers, but again, he was sick fighting the virus. And so a lot of things were overlapping in their brains. And so I went back home again by the end, they gave him very strong Motrin at the hospital at CHLA.

By the time I got home and I had worn off, I gave him Tylenol, I just started that whole merry-go-round again. And by day seven, or eight, I think it was maybe day eight, my pediatrician again was kind of pestering us at this point, called my husband and said, listen, I'd rather lose you guys as patients, but you need to go back and I'm gonna make sure you guys get admitted. Like, this is not normal. Eight days of 102 fever is not okay. So, you know, we went back to the hospital, we knew we were getting admitted, we got admitted.

David Heflin (09:28.291)
No.

Tveen (09:34.957)
and we got admitted September 11th and by September 14th we already had the cancer diagnosis. They first thought that it was an orthopedic issue, which again, a God thing, the orthopedic surgeon we ended up having ended up coming back to us on our last day and laid his hands on Alex and prayed over him. he thought it was like a hip infection and so he was like, I'm gonna do an open biopsy and if I find cancer, I can't do anything. But if I see an infection, I can clean his bone, because I guess,

I didn't know like bone infections, know, things like that are pretty serious. He's like, I'll immediately clean it and then we'll know what it is. And so they did the open biopsy and within 30 minutes we got the call that the surgeon needs to see us. And I already knew at that point, like 30 minutes, like this is, this is cancer. And my, my husband is like the biggest optimist. He's like, there's no way Alex has cancer. He was like angry, you know, there's no way this is cancer. And I up being cancer. We heard the word malignant, you know, we heard I'm so sorry. And then we were now.

oncology patients. And so then, you know, after that, it's just one, one test after the other, we thought leukemia or there was this other cancer called neuroblastoma. And this whole time, you know, my husband's an engineer researching and he's like, Oh, we, know, hopefully it's leukemia. It's like 95%, 60, you 95 % child children like recover from leukemia, never deal with it again. And neuroblastoma was like 60, 70 % survival rate. And it came back as neuroblastoma. And then it came back as

you know, high risk aggressive, which basically meant that it wasn't over 75 % of his body was already in his bone marrow and heavily in his pelvis and femur, which is why he wasn't walking. And I, it's still crazy to me that a month before he was fine. And so I kept saying that doctors like, but he was fine. said, you know, with childhood cancer, everything is fine until it's not fine all of a sudden. And it just felt like our whole world was completely shattered at that point.

David Heflin (11:13.155)
Hmm.

David Heflin (11:17.794)
Mm-hmm.

David Heflin (11:25.292)
Right.

Tveen (11:32.343)
And then after that, was just a long, treatment protocol, a year and a half of a lot of hospital stays, lots of vomit, bald head, all of the things that you think of. We went through it with Alex. But yeah, that was the start of a lot of things changing, obviously, for our family.

David Heflin (11:52.206)
It's hard to imagine if you're someone like myself who has kids, it hasn't been through that. In some ways we would say, that's our worst fear. And so as this is all hitting you guys like just a bombshell, was it just overwhelming grief or was it more like shock? mean, how emotionally were you processing those early days, especially after you've heard the word cancer, you've heard the word malignant, how are you able to kind of...

stay emotionally centered, or maybe you weren't able to, but just kind of what was that like for you?

Tveen (12:24.385)
Yeah, I mean we had our moments. My husband and I were both together at the hospital for this stay, which I'm grateful for. You after this one we kind of had to tag team a lot because we had other kids. But we were pretty emotional. I would say shocked and emotional. Lots of tears in that hospital room when it was just me and my husband alone. I've never seen, I know you won't mind that I share, I'd never seen my husband cry like that before. And as the daddy of the house, he was just so broken that he couldn't

fix this, couldn't provide it away, protect it away, like all those things, you know, he couldn't do anything. We felt completely hopeless. And I, because I think of the miscarriages, I just kept, when I had those miscarriages earlier that year, the goodness of God song was something I played on repeat in our house because I just wanted to especially teach my kids that God is good even when life is not. Life is not going to always be good, you know?

But God is good and he's in there in the dark, in the storms, in the hardship of life, he's still there. Because I never wanted them to lose their faith or their belief that God is God even when life is awful. And so I just kept telling my husband that I said, we're not exempt from suffering as believers, as Christians, we're not exempt from suffering. It's not like God doesn't promise us.

beautiful life, but on the other side of that you never think it's going to be your child. And I think that's what shocked us the most. You read a lot about these stories or you know see them as a third-person observer and I remember sitting in the hospital being like I am the mom of a cancer child. I am a cancer mom and I have to figure out how to do this. And I called my cousin who has a son who went through a heart know heart issues as a baby. She spent a lot of time at children's hospitals.

And her son is thriving now, plays club volleyball and athlete. He's wonderful. But I remember calling her and saying, I'm not cut out for this. I'm not cut out to be in this world. And she said, you don't have a choice. God is going to equip you. God will match your situation with his grace and his strength because this is where you are. You are Alex's mom right now. And he knew this was going to happen. So you have no choice. You are going to be equipped and he's going to strengthen you. And that was really what I needed to hear.

Tveen (14:41.261)
because there was so much advocating, so much that you know as a mother, like they call you a medical mama at one point because you just learned so much about this terrible sickness and the meds and I had to give them injections at home. It was just so much that just changed everything about our life. And I really believe that the emotions brought us closer to God, the brokenness brought us closer to God, and ultimately we could only rely on God. That's what this type of thing.

does I feel like it spiritually prunes you unfortunately but it just draws you closer and closer to the Lord so that's really what we we tried to focus on of course there were moments of anger moments of like why God why him why our son but I think those thoughts were also safe with God so we like just prayed that to God in a way so yeah

David Heflin (15:34.542)
Yeah, that's powerful because the hope that we need is that God is with us in those kind of moments. God has not abandoned us. And even that you said you drew closer to Him. I always think of the passage that talks about, near to me and I will draw near to you, that God desires to be close to us in those situations. And so it's encouraging to hear that, especially like that, what you said earlier, based on the goodness of God song that

God is good even when life is not, and there are many times when life is not. And I think probably no more than when something's going on with your child of this magnitude. I do want to talk just a moment about the treatment for him, for you guys, what was the hardest part of that, and along with that, to speak about how Alex was doing through, I mean, know he's always two. I'm assuming comprehension is limited to a large degree.

But he knows he's sick maybe and he's just struggling. So kind of what was that like for him and what was the treatments like for you guys watching all this?

Tveen (16:38.349)
Yeah, it was hard. You he was two and a half. He also had a speech delay before this. had a lovely speech therapist who actually lived two blocks from CHLA and would visit him so much when he was in the hospital. She was completely crushed when all of this happened, but he wasn't very verbal, which was why, you know, when he was saying, owie, owie, when he was had a fever, I was like, oh, well, he's sick. has body aches. You know, he has COVID. But, you know, we had to kind of get it out of him. He finally pointed to the leg.

that they biopsied on him, but he was little. had babies and diapers. He kept saying, why am I here? And we kept saying, because you're sick. And he say, I'm not sick. I'm not sick. He just wanted to play. We got so many stuffies and gifts and books and toys at the hospital. So for him, it was rough, obviously. He did five rounds of chemo.

with immunotherapy, we had two bone marrow transplants, were month long hospital stays each, so 30 days and then another 30 days. And then we had radiation and then more immunotherapy. It was a lot on him. did the typical vomiting. At one point he was vomiting so much they thought that there was a new tumor growing in his brain and nothing went right. The chemo wasn't even working because he's still vomiting. And so that was a terrifying 24 hours until they did a scan and they were like, no, it's just.

The chemo's hitting him rough, so he actually did not gain any weight throughout this whole thing. Now he's four, so in the last one and a half-ish years, he stayed pretty much the same weight. He went down a lot, obviously, with all the cancer treatment. For him, though, we did try to make it as fun as possible, buying him new toy every time we were going to stay there. We'd order the food he liked. We got blessed with lot of DoorDash gift cards.

thank the Lord because the hospital food was not that good. And so, you know, getting him like the burger he wanted or taking walks around the hospital when he could leave the room unless he was in isolation. And so he, I mean, obviously I'm sure there's residual stuff, you know, with him that maybe we'll see later on. But as a, he still was a very much a typical two, three year old boy wanting to play, wanting to his movies. The main thing that kind of...

Tveen (18:53.043)
impacted his quality of life was he had a central line placed in his chest and this was the type that he could not get wet or submerge in water. So as again a boy who loves to play in water, play in dirt, it was a line directly connected to it's a central line and if it got infected it could cause a heart infection or cause like sepsis overall. And so he couldn't play in dirt which he used to love helping my husband garden. He couldn't swim, he couldn't get wet and so we had to like kind of do like sponge baths for him and be really careful.

David Heflin (19:01.088)
Okay

David Heflin (19:11.191)
Right.

Tveen (19:22.529)
So that was really hard. know, they would want to run in the sprinklers like a typical kid and he wouldn't be able to do that. But that was the main thing that kind of impacted his quality of life. And then he also did end up having hearing loss from chemo, which happens often. And they say it's not reversible. It's permanent hearing loss. So we have hearing aids at home. Does he wear them? It's a struggle to get them into his four year old ears. Sometimes he really doesn't want to. I'm trying because it will affect his speech, you know, with hearing loss, this young.

But overall, know, he even asked me the other day, was like, when are we sleeping at the hospital again? I was like, we're not. we're not. Lord willing, we never have to sleep there again. But I think for him, we really did try to make it fun. He got one-on-one time with me and my husband, you know, just me with him or just my husband with him. And so I think he has as fond as you can memories, but we'll see probably as he gets older. But yeah. Yeah.

David Heflin (20:15.192)
Sure, So his status now sounds like that the treatments that he was going through are behind him. What is his medical status today?

Tveen (20:24.811)
Yes. Yeah, so right now he's considered in remission. We rang his bell in January, actually, so about a month ago. And actually the physician's assistant right before he said, know, with the way Alex's cancer presented, his response is unremarkable and highly unusual, which I love hearing those words because I'm like, that's because of God. You know, when he presented, he had weeks to live. They told us he has weeks to live.

And no parent wants to be in that. You we got asked like, don't you go to a second opinion? And I was like, he had he has weeks to live, you know, we have the evidence. He's limping. He's not eating, you know, so the fact that he had weeks to live and they even said there were certain, you know, markers they found, I won't get too technical, but certain markers they found on his cancer cells that would point to like chemo resistance or not being able to respond. And he responded beautifully, you know, praise the Lord. And he even said it's remarkable and highly unusual.

David Heflin (21:17.42)
the Lord.

Tveen (21:19.789)
And so right now he's in remission. does have scans every three months for the next two years. Neuroblastoma unfortunately has a high relapse rate, which I like to not think about, but it is a reality. So they're pretty aggressive with monitoring. So every three months his next set of scans are in April. And so he'll have scans to kind of score his body and make sure that he's still in remission. And then after two years, it's every six months and then every year. So we still have, you know, hospital appointments ahead and things like that, but

Overall, we're really enjoying his not having to go to the hospital multiple times a week and not having to sleep there and trying to get him to start homeschooling with us at the table, which is a little difficult for, again, a four-year-old boy who just wants to run around and play. overall, he's doing well. He responded. And right now, we're done with active treatment. It's just follow-ups at this point.

David Heflin (22:12.6)
I'm very glad to hear that. And yes, I think praise the Lord is obviously the correct response to that. so we will praise the Lord with you. I do want to talk about family dynamics during the kind of the heat of the crisis, if you will, just because I know like even in the things my wife and I have dealt with and we've not dealt with what you're talking about, but we've dealt with some things and the way that we handle things are differently from one another.

Tveen (22:18.551)
Yes.

Tveen (22:22.349)
Thank you.

Tveen (22:35.501)
Mm-hmm.

David Heflin (22:40.138)
It took a while for us to learn that, you know, and, you know, we've we've grown through that. I think we're better communicators now, but I'm just curious for you and your husband, did you handle things in a similar way? How did you stay together and connect it through this?

Tveen (22:54.381)
Yeah, we, I honestly, so we are pretty different with how we handle things. I like to like map things out, bullet points, plan, like talk overly communicate. And my husband is like, let's just have a little fun and we'll deal with it later. Like we're very different. But with something like this, I think God really helped us be there for each other in the way we both needed it. And we even got comments from some of the nurses, like there's something different about you and your husband.

When we come in here, there's like peace in this room. And I was like, well, that's again, because of God. But also we're really, we had a whole like army of people praying for us and for our marriage, for our kids, like for specifics, because cancer has broken up a lot of families. know people who the parents end up getting a divorce or things like that just because of strain. So we really did try to remain together and on the same page and be there for each other.

It did get hard as we were expected to still go through our real life. My husband went back to working. He was working from home, but he took two weeks off initially when we got, actually he didn't even, he was still working from the hospital, but he tried to take time off when we first got the diagnosis. But then when we got back home, it was like, okay, I still have to cook meals. I have to do laundry. I have to go to school. There's normal life that we still need to do. have two other kids we're raising. It can only be about the sick one.

And so that was more challenging, you know, giving him the time to work and, you know, letting him focus because he obviously had a hard time too focusing on work and then also trying to take care of everyone. And so we didn't, you know, get a lot of dates in or anything like that, but we just tried to enjoy our time, our days together as a family and everything became a celebration. And that's what I love about my husband. Everything was like, we're all home today. Let's make pancakes. Yay. We're all home. Like I said at the beginning, we're a family who loves to all be home.

We homeschool, we enjoy each other. And so it was really difficult to be splintered, whether it's for appointments, for those long hospital stays. And so he really was like, everyone's feeling good. Let's drive to the beach or let's go to the park. He really tried to infuse as much joy in our family as possible when I wanted to just like, my coping mechanism is like planning, like plan, plan, plan, plan, plan. And that can also keep you stuck because then you're not acting. You're just sitting there with like paper and pen trying to figure everything out.

Tveen (25:17.259)
and so much was out of our control. And it was just like, we can only do what we can do and trust that God is gonna carry us through this. But we really did try to stay in communication as much as we could and just be there for each other. it was some seasons it was funny, we would joke that like when I was having a hard day, he was like the strong one. And when he was having a hard day, I would be the strong one. And so we were always kind of there to balance each other out with how we were feeling.

David Heflin (25:43.822)
That's pretty powerful in the way you guys complimented one another in that way. And I'm especially touched by the centering of joy in the midst of a extremely hard circumstance and the fact that you could emphasize that joy in living in the moment together and celebrating the occasions to be at home or to go to the park or whatever it might be, a birthday or... So that's powerful. And I think people need...

to hear that because I think sometimes, again, the assumption is maybe if this is just starting for someone or even if we're just imagining something like that happening, it's like you must be totally 100 % sad and depressed the entire time. can barely function. And that's not going to work when you're, like I said, you're raising two other girls, right? And have a marriage that you don't want to only maintain, but you still want it to.

Tveen (26:34.583)
Yeah. Yeah.

David Heflin (26:41.126)
to bless one another in that marriage. And so I can see that God was with you guys in that. And I know you had a lot of support from others. I got this from the other podcasts I listened to. You talked about the door dash here too. But just a lot of loving support and people coming to your aid. And that's powerful because you need community around you, loving Christian community, obviously your family itself. And it sounds like you really had that in spades.

Tveen (27:09.377)
Yes, have a huge family. have a lot of church family. We had homeschool friends. We had a lot of people that came around. There's people I didn't even know would send us door-gift cards or send the kids. They got spoiled. Every day there was an Amazon package with a new toy for the girls because they were home. All we did was take them to the hospital and then we didn't come back for two weeks. And then we have to tell them about this heavy diagnosis. And it affects siblings a lot too.

David Heflin (27:09.512)
I don't know if you wanted to say anything about that, but yeah.

Tveen (27:38.093)
We had, you know, we're very blessed that both of our parents live near us and they are healthy and they came, they took care of the kids. They would have sleepovers. We had, you know, like I said, a lot of church family, a lot of friends. I don't think, I don't know how we would have gotten through this without that. And they they tangibly helped, but they also prayed. So my daughter's friends made these Alex's Army bracelets and were selling them as like a little fundraiser for us.

And it was cool to see kids praying for my kid. know, like kids all over were wearing them and praying for Alex. And I don't know how we would have done it. And I also had this comfort. My little cousin, she was like 18 at the time, my little cousin called me and said, you know, when you and Buskin are tired of praying, don't worry. We're all interceding for you guys. We're all interceding for you guys. And that was just such a comfort because sometimes we didn't even have words. We were just like, why? Like there's just that groan, you know, of like.

David Heflin (28:17.909)
You

Tveen (28:32.865)
what is happening to our family. And we look at Alex and we're like, are we, is he gonna be around? Like it was a very real fear, you know? And for a while we didn't know if this was working. We kind of had to trust the process and then we would finally get scans to show that it was working. But I had that comfort that people were interceding, excuse me, interceding for us and praying for us even while we felt like weak and spiritually drained. community is huge.

And like I said, had a business before. I would use my Instagram to market my business and share inspiring content and encourage women. And then I started sharing about Alex. And part of me was like, do I share? Social media is so, ugh, nowadays. But if it wasn't for social media, so many people would not have prayed for him. And so there's this beauty of bringing people together through stories like this. And people all over the world were praying for him because of social media, because of Facebook, because of things that.

And so we're really, really grateful for community like that.

David Heflin (29:32.408)
Yeah, that's awesome. That's awesome. Your daughters, so how old were they when all this was going on?

Tveen (29:39.597)
So when it happened, they were seven and five. And so now they're almost nine. No, yeah, almost nine. My middle just turned seven. But they were seven and five when all of this happened.

David Heflin (29:52.236)
And was there way of dealing with this different from one another?

Tveen (29:56.875)
Yes, it's so funny. My oldest is the typical anxious oldest child and my middle is more so concerned. It's like me, myself and I face sometimes with her. But it's not funny. I can laugh now. But when we were telling them, my husband was like, how am going to tell them? And I was like, we just have to tell them. And so we sat them down in the hospital room and we said, Alex is very sick. And it's different sickness. We can't give him medicine at home. We have to come here a lot.

and give him medicine here. So we're going to be here a lot. And, you know, my middle immediately was like, is it contagious? Like, can I catch it? You know, is that, know, because they think of sickness as something contagious, right? I said, no, it's not contagious. And then my oldest was just like looking at my husband and she was like, is he going to die? And, you know, you don't want to make a make a promise you can't keep. And so in that moment, my husband, which he still he still questions if he's like the right thing or not, you know, and he was like, well, we're trying to not let that happen.

That's why we're gonna be here a lot. And my oldest Emma just like burst, crumbled in his arms, completely burst into tears. I think she just connected the dots that this is something he could die from and this is something serious. And even to this day, they'll ask me questions, they'll bring things up and we worry, they pray for all the children at the hospital. They pray that children's hospital will close down because there's no more sick kids. Like they pray very cute prayers like that.

But they did deal with it differently. Lily, my middle was always upset when I was leaving because she wanted me. She was upset that I wasn't home. And my oldest Emma was more concerned about Alex and if he was going to be okay because I think she realized the gravity of the situation a little bit more. And now she's almost nine. So she's definitely matured through this. And I just pray that again, God uses this.

as a way to strengthen them because sadly I've heard from a lot of people that yeah, the siblings really suffered because everything was about the sick kid. And so, you the siblings are messed up for life. Like I heard that a few times from different families. And I was like, I don't want to think that way. I want to think that God is protecting them, sparing them. I pray that, you know, as much as of course we're all going to have residual trauma from what happened, that God can use it for good, even in their lives, you know, that's my ultimate prayer.

Tveen (32:23.575)
Yeah.

David Heflin (32:25.635)
We were talking a little bit about how some people are able to be present in a moment like this better than others. this was all before we went on air, that some people struggle with that. And you extended grace toward those people, right? Maybe they haven't been through something similar enough to connect, or maybe it's the way they're wired or whatever it may be. But I am curious what

actually was helpful to you, what kind of presence was helpful for you when people came to walk alongside you in this. You can contrast to what was not helpful if you want, but just kind of give us an idea. Maybe some others listening are supporting friends that are going through this and it might be helpful for them to know what supported you the most.

Tveen (33:13.869)
Yeah, well it always supported me when people said they were praying and even in the moment some people just prayed for you. Our family just prayed for you. You know that was really encouraging that in the moment we were being thought of because I was sharing our journey on social media as much as I could. I still try to weave in my nutrition and my you know I wanted to be an uplifting space but I was still I was still share like we're in the hospital you know he's not feeling well can you pray and so a lot of people would be praying or asking for prayer for Alex every time he would be going into for more treatment.

That was very helpful. were allowed visitors, which was so helpful, except for a bone marrow transplant. We weren't allowed any visitors, but during our regular chemotherapy stays, we were allowed visitors, which was so nice. People would bring me like crumble cookies or a sweet or coffee and just sit with me because it can get pretty. You can go stir crazy in a hospital room for as many days as we spent. I read a lot of books. My Goodreads, I read over like a hundred something books last year just because I was at the hospital so much. know, Alex slept a lot. So we just I just read.

But you know, being people coming in really helped me get my head out of my own cancer world there with Alex. So that was really encouraging. And then letting people letting us feel how we felt. I did get some comments on social media sometimes if I would post like the broken heart emoji. Someone was like, why are you why do you keep you know posting a broken heart? It's like because I'm broken hearted because my heart is breaking for my son and I wish I could be doing this instead of him. You know, I wish they could just hook me up and I could just do this all.

And so I think it's okay to be brokenhearted. The Bible says the Lord is near to the brokenhearted. He doesn't say don't be upset. You know, I heard that a lot like don't be upset. Why are you upset? Don't be upset. And I just be like, are you kidding? This is like very upsetting to say the least. Like you said, it's a parent's worst nightmare that this is the diagnosis, right? You know, so again, you have to give people grace. I realize and my husband realized that some people are more comfortable around brokenness and pain.

Especially if they've experienced their own pain, they can really mourn with those who mourn a little more comfortably because it is pretty uncomfortable. For example, before I had my miscarriages, I never knew what to say to friends who had a miscarriage, you know? And then now that I went through my own suffering, I feel like I'm more equipped to be there for others. Not that it makes the suffering any less painful, but I think sometimes people just don't know what to say and what to do, and they don't want to say something that is not helpful.

David Heflin (35:32.696)
Mm-hmm.

Tveen (35:39.713)
But I think just people's presence and feeding us and praying for us were very helpful. And like I said, allowing us to be sad or worried, you don't worry or don't be upset was a little, I mean, I the Bible says, don't worry, don't be anxious, but you know, letting us kind of go through those natural human emotions of like, this is, this is a big, big deal that's happening. And then entering into it with us with prayer was incredibly helpful. So.

David Heflin (36:07.01)
Sometimes I wonder, know, with people that struggle, like you said, to sit with brokenness, it just somehow, you know, they're afraid for themselves or afraid that they won't be able to, maybe they're afraid that somehow God doesn't come out of this thing looking vindicated or something. And so they have to say something ends up being pretty trite and, you know, shallow. But I completely agree with you and what you were stressing there.

Andre's put in our comments here, our producer, the verse, so Psalm 34, 18, the Lord is near the brokenhearted. He saves those crushed in spirit. So yeah, what powerful reassurance that is for sure.

Tveen (36:51.351)
Yes, exactly.

David Heflin (36:54.278)
well, I'm curious since you brought up a little lighter note, although you may have read some things that helped you, during that time, you've read a hundred books in a year. What kind of books were you reading? Was there anything that actually, meant something to you in a special way during that time?

Tveen (37:10.285)
Yeah, so I tried to balance out my genres because I didn't want too many heavy things while I was there, but I also read a lot of books that encouraged my faith. So I read a, take courage to your heart based off of the C.S. Lewis quote from Narnia about just having courage in difficult times. I read a book that I, Unmet Expectations, I think it was called, about when life disappoints you.

and how to deal with that as a believer, as someone who trusts God. What do you do when life disappoints you? I read Don't Give the Animesia at Your Table twice because that was, I think it's from Louis Jigolo, I don't know how to pronounce his last name, but that was a really good one. I went through Psalm 23 and just, you know, verse by verse. That book was really helpful for me. I did read like light romantic comedies. I actually read a lot of Jane Austen. I love Jane Austen. And so I read

some of her books. We read some of her books. I read Little Women. I read Tale of Two Cities, which is a very long book. But I tried to read some classics too. So a little bit of everything. I read a of homeschool books, which was a little difficult for me because I wasn't homeschooling as much as I wanted to be homeschooling. But I still try to. I was still a homeschool mom. And on the days that I wasn't home homeschooling, my dad was actually coming. My dad retired and he would come and homeschool the kids for me so they wouldn't they would stay consistent, you know, consistency.

when you're homeschooling. And so I was trying to read all of those books too. So I did read a little bit of everything, like a nice balance.

David Heflin (38:41.454)
That was probably pretty wise and you probably needed some lighter stuff. By the way, Tell It To Cities is one of my favorite books because it just has, yeah, it is. Yeah, just because if it's just Christian, it's really kind of based on the idea of the love of Christ, right, and sacrifice. And I won't give any way. If we inspire anybody to go read it, I won't give away spoilers. It has been out for a couple hundred years, so they should have.

Tveen (38:45.879)
Yeah.

No way. I loved it.

Tveen (39:00.247)
Yes, sacrifice, yeah. No, I know. I finished it and I was like, whoa, you know, like it's you think about the shirt afterwards. So yeah.

David Heflin (39:11.211)
Yeah.

David Heflin (39:14.85)
takes a little while to get into it, at least from my experience, just because it was written so differently. it's like Dickens does not spare any words when he's describing something. But yes, the story itself was amazing.

Tveen (39:24.897)
No, no, not at all, not at all. Yeah. So good, yes, yeah.

David Heflin (39:33.004)
Well, I was going to double check something real quick.

David Heflin (39:42.094)
And I think I'll just get my editor, John, to edit that little part out. yeah, for some reason, when I put the questions over here, it didn't put them all. And so I lost my place a little bit. Well, think what I would like to do too is just so we will put some links to those books that you mentioned that were helpful to you in that situation. The Louis.

Tveen (39:44.897)
Yes, that's fine.

Tveen (39:54.189)
Oh, that's okay.

David Heflin (40:09.408)
And I don't know either gigolo or you know book and then the unmet. What was the other one something expectations or. OK was that the one he wrote.

Tveen (40:11.553)
Yeah, it's good to talk.

expectations.

No, his was don't give the enemy a seat at your table. It's based off something. Yeah.

David Heflin (40:23.47)
Okay, and I've heard of that one actually. I've heard of that one. I haven't read it, but I heard of it. Yeah. So we'll put a couple of links for people there. Are there any other just kind of resources that you would recommend for people who are going through something like this, especially early on?

Tveen (40:40.845)
Yeah, I think being aware of what you're consuming, you know, maybe this won't be popular, but I was told to join support groups and I did not and I'm very grateful I did not because I joined one on Facebook and within an hour I was like I need to leave because it was just a lot of bad bad stories and I think like I said there are bad stories out there but when you are actively going through cancer with your child

And you don't know what the outcome is going to be. I think it's really important to like even our doctors were saying don't Google things. Don't just go try to find your own information sometimes and just really like protecting, guarding your heart and guarding your mind. And so I did have like one other mom who had gone through cancer that I felt like I could talk to about things. So I guess resources would be people that you trust would be a resource I guess. But you know I tried to stay off of like the public forums where like

lots of cancer families were talking all at once because it, you know, you can obviously pray for them, but when they're, it just was very, it didn't help me be like energized to take care of my own patient child, you know? So that was something I had to be a little careful of just because I do run a little anxious and I do, you know, I didn't want to think doomsday about things. And so I had to kind of protect my mind a little bit.

I didn't listen to any like cancer podcast. There's some out there. I don't know. just because I was already already in the cancer world. I it was a little a little too soon. I felt like to just like immerse myself. I think the biggest resource for me was was the Bible. I know that sounds so cliche, but the Bible and the Psalms. I really sat in the Psalms a lot because I just felt like David was suffering and David was running for his life.

And so many of the verses, you know, I related to like there's the verse I think it's 16 eight. I'm not sure. But you know, I will not be shaken because you are right beside me. You know, like I will not be shaken because you are right beside me. And that was when I said over and over to myself because I was a goddess here in this room. God is with me right now. He's right beside me, you know. And so I think that I don't know, I didn't really find a lot of comfort in like other resources, but I really had to kind of get as close to God as possible, which I know sounds a little

Tveen (43:04.397)
obscure, but I think when you're in those moments like your Bible and asking God to search your heart and bring you to verses that will comfort you, that was really encouraging for me personally. So yeah.

David Heflin (43:16.046)
Okay, well thank you for sharing that. Psalm 16, 8, I will always let the Lord guide me because He is at my right hand. I will not be shaken. And maybe other similar places that's said in different ways in the Psalms and other places in Scripture as well, but it's very powerful. I think a lot of people want to know they're not alone and that's the message of hope we can get people in Christ is that you're not alone, that God is with you, that Jesus will never leave you, and that you have...

Tveen (43:24.717)
Yes.

Tveen (43:37.773)
Thanks.

Tveen (43:42.711)
Yes.

David Heflin (43:44.458)
and hopefully some others in your life too, as you did, that were able to be supportive. And so that's really important. I really appreciate what you had to say just kind of about how sometimes online forums and support groups can become a place of, know, negativity. And again, maybe other people need to commiserate in that way, but for others, it might be actually harmful or not allow them to be able to focus on what's in front of them.

Tveen (43:48.545)
Yes.

David Heflin (44:14.49)
And I say that because Broken and Mended is a support group ministry. But one of the things that we do, I think, differently than most support groups, because we've had people come into our groups that had been in other support groups for chronic illness. And most of those were not Christian based. But even some of those that were, it was only about, this is horrible. This is how terrible it is. And it wasn't directional in any way.

Tveen (44:42.574)
that's such a word to use. Yes.

David Heflin (44:44.854)
Yeah, I've made it. don't. Is it a word directional? I think it's gotta be right.

Tveen (44:48.429)
Well, you know, but it's like, I felt like that a lot even in, you know, certain, you know, let's say therapy, you know, everyone's like, do therapy. I'm not pro or against therapy. But a lot of times when I was in therapy, I just felt like I was rehashing all the bad in my life. And I was like, but I still need direction. I still need to get up and I need to take care of my kids and I need to take a shower. I need to clean my house. And you know, like, I just felt like when you're like you said, when you're just rehearsing the grievances of your life, sometimes

David Heflin (44:54.872)
Mm-hmm.

David Heflin (45:09.441)
Right.

Tveen (45:17.025)
There is a place for that, of course, like you talked about the Lord is near the broken-hearted, like hurt with those who are hurting, but you also need some something to spark you back to life. Cause I didn't want our identity as a family to be like the cancer family. You know, like I didn't want that to be like, you know, our existence. And so, sorry, continue whatever you were saying, but I really liked that word. I think it's a good word to use for maybe a more like giving support group versus just like dooms, doomsday.

David Heflin (45:46.598)
And that's a good word, life-giving support group, because that's what we endeavor to do with Broken and Mended. And so I will say for people out there that are looking for that kind of support, but you've had a negative experience to give Broken and Mended a try. Nothing is right for every person and in every time, so that's something. But we really do also focus on things like spiritual formation.

In fact, just for the sake of this discussion, and if our audience is curious, I can tell you kind of the things that we emphasize. We do emphasize lament because lament is important. Grieving is important. But we also emphasize spiritual formation because God is not done with us. He's still taking us somewhere through this trial. We emphasize identity because illness is not our identity. Our identity is being made in the image of God and redeemed into that image through Jesus Christ.

Tveen (46:22.573)
Yes.

Tveen (46:29.931)
like that.

Tveen (46:40.471)
Yes.

David Heflin (46:41.548)
and we emphasize community. In other words, being together for one another. so I think that that kind of keeps us balanced when we're trying to think about how to, you know, when we're making our curriculum and things like that. So I really appreciate you bringing that point up actually, because it makes a good point. And there are unhealthy type forums that people can get into. And maybe there's the type that are just maybe plainly unhealthy. And then there's the type that just may be unhealthy for you. They just may not be the right.

you know, fit for you in the time that you're in as well.

Tveen (47:09.687)
Yeah, exactly. Because, you know, sometimes the advice I was given is give yourself grace, which of course, you know, but to what end? Because my you know, at one point, it became like this, okay, but also, like I said, I am someone who my mindset is really important to me, you know, like I worked with women on mindset, I still do, you know, renewing your mind, taking your thoughts captive. And so if I'm just constantly functioning from this place of like,

It's okay. I didn't do that. It's okay. You know, we're going through a tough time. just I wanted like you said, like God is not done with us and he's using this to form us and I didn't want to miss that. I didn't want to miss what God was doing because I was so, you know, in sackcloth, you know, like grieving the life I dreamed of. And of course I had those moments. I did grieve the life we even considered putting the kids back in school because even the doctors were like, you're gonna be so busy with Alex, you know, you're gonna want the kids, the girls out of the way type of thing.

And our really good friend, Odin, was like, you know what? That's going to be a lot of loss on your family all at once. We just started this whole new thing. Alex got sick. If you just put the girls back, it's going to be a lot of loss all of a sudden. We got a lot of godly counsel like that just in our one-on-one conversations with people to not just throw everything up in flames, our dreams, and just, I don't know. Like you said, it's not our identity. It is a big part of our life, obviously, and part of our story. But we didn't want it to be the only thing we talked about.

or the only thing that could work out. So, yeah.

David Heflin (48:39.406)
That's right.

Well, I appreciate your wisdom on that and I appreciate you sharing this deeply personal story, but I think I can tell in the way that you share it what you've been talking about that you don't want it to be wasted. You want it to be used for good. You want God to use it to help others. And so we really appreciate you being with us today. And certainly we will continue praying. We will join those many thousands of prayer for Alex that he continues to.

Tveen (49:11.597)
Thank so much. Thank you. Thank you for having me and listening. Thank you.

David Heflin (49:12.181)
Do well.

David Heflin (49:18.336)
Yeah, absolutely. Well, that wraps it up for this session of In the Seams. I will remind our listeners that you can go to brokenemmended.org to see the website or see the resources that we have there for people. And we look forward to you joining us the next time on In the Seams.