027: God is Awesomer than Cancer with Kara Jones

[INTRODUCTION]

Arwen Becker: You know, it's so interesting in life sometimes you have these moments that are kind of seemingly unimportant, kind of innocuous, right? And those discussions end up turning into something pretty massive. And I ended up having one of those, September 2017, with my guest today, Kara Jones. And for me, I was really a spectator of this tsunami that was about ready to hit landfall in their lives at that time, but we're going to get into that. But first, I want to introduce my wonderful friend, Kara Jones.

[INTERVIEW]

Arwen Becker: Thank you for joining us on the show today, my dear.

Kara Jones: Hey. Thanks for having me. I'm so excited.

Arwen Becker: I'm so excited to have you here. So, before we get into today's topic, I know you had actually brought a song to add to our overcomer playlist. What's that song? And why did you pick it?

Kara Jones: Okay. It's Confidence by Sanctus Real. I'll just tell you the lyrics. That's why I picked it. And then once you hear my story, you'll know why I picked it. It starts off as:

I'm not a warrior

I'm too afraid to lose

I feel unqualified for what you're calling me to do

But Lord with your strength

I've got no excuse

'Cause broken people are exactly who you use

So, give me faith like Daniel in the lion's den

Give me hope like Moses in the wilderness

Give me a heart like David, Lord be my defense

So, I can face my giants with confidence

Arwen Becker: Oh, I love that song and I love that band too, by the way. So, before we begin today, why don't you tell me a little bit about you and your husband? Because when we initially met, I think you guys had recently moved here to the Pacific Northwest from LA and your husband was a TV producer down there. So, why don't you kind of give me a little background on what it was that he was doing and maybe why you guys decided to come up to the Pacific Northwest?

Kara Jones: Well, my husband is a producer and we were living in LA. We had just had our first son and it was pretty lonely. I had no family. I had my friends but none of them have kids. So, when your friends don't have kids and you say you're tired when they get home, they're like, we go out to brunch, and they were saying they're tired. I'm like, “You have no idea what tired means.” It means you went to bed like late. That you’re sorry, but that's not tired. And so, my husband has always traveled and so his friends worked from - they lived in Hawaii, they lived all over the country, and they just fly us to set. And so, we had the opportunity to move to Seattle, and we literally jumped on it. I had gone to a MOP’s meeting and I said, “God, just open my heart to move me.” And that day, he opened a house for us and we moved up the next month.

Arwen Becker: Wow. That's crazy. Yeah. And how old was your son at the time?

Kara Jones: Ten months.

Arwen Becker: Okay. Yeah. You were like, “I need a new nest and this nest is no longer…”

Kara Jones: Yes. After Reeder was born, he left. Three days after he was born, he was gone 17 days on Extreme Makeover Home Edition.

Arwen Becker: Wow.

Kara Jones: So, that was our life like I can't be like, “No, don't work.”

Arwen Becker: Right. Exactly. And so, are both of you from this area?

Kara Jones: He's from Texas. I'm from Seattle.

Arwen Becker: Okay. So, it was a really big benefit for you to be able to get close to families since you were spending a lot of those days without your husband at home.

Kara Jones: Yeah. I’m 100% stay-at-home mom.

Arwen Becker: Yeah, totally get it. And so, what I remember is Jay had done Extreme Makeover. He also worked on the Tyra Banks Show and a number of other things.

Kara Jones: Yeah. He proposed to me on the Tyra Banks Show. Yeah. He worked on Ice Road Truckers, Extreme Makeover Home Edition, Hoarders.

Arwen Becker: Which he's doing right now, he's working on Hoarders again, correct?

Kara Jones: Yes. And he's done like, oh, he entered on the Jerry Springer but he doesn't want people to know that.

Arwen Becker: Oh, shoot. You just said it. Should we edit that?

Kara Jones: I know. He said he like it so real. That's for real.

Arwen Becker: Yeah, that's hilarious. I love it. And so, when I initially met you, guys, actually it was my husband who ended up running into you. You're working at a bowling alley at the time and you guys started up a conversation, and you and your husband had actually, you had created this idea for a show that was fully your idea, something that the two of you wanted to do together called The Experience. And I remember Jay telling me it was like a cross between Intervention and Survivor, I think is what I was told.

Kara Jones: I guess our goal is reviving, rebuilding, connecting, and healing.

Arwen Becker: Yeah. And so, why did you guys come up with an idea? Why did you even want to do a show yourself personally?

Kara Jones: Personally, okay, so being in the industry that Jay was in, once we had kids, Jay made a vow to me and to his kids that he would only work on shows that changed lives at work. Being in TV, it can be very manipulating and as a producer, he would have to lie and make people do things. It didn't sit right on him. And so, we did a lot of praying and that's when Hoarders came about and it was like, great, because they do help people and they do great things for those hoarders. And we've always done things on our own. In the beginning, we used to do like really raunchy, stupid sketch comedy and it just didn't sit right. It didn't feel good. You know what I mean? And so, we just started coming up with ideas, and God put that one on our heart, and He put it on our heart because He knew what we were getting ready to go into. it was funny because like all the things that we would learn after every episode and it was, I think, for us preparing us for what was the tsunami that was just getting ready to happen.

Arwen Becker: Right. Yeah. So, I know that when Randy and you talked at the time, I think the way you guys were doing it is that you would have mentors that mentored just in a specific area like money, right? So, when you were saying, “Hey, we're looking for some mentors,” and then I think you started talking a little bit about the show, and specifically trying to find somebody that could work with a woman, which was one of the – do you call it contestant? No, they're not contestants. What are they?

Kara Jones: It’ll come at me because it’s not a contestant. It’s like a guest.

Arwen Becker: Yeah. The guest that really has no idea because this really is set up in kind of an intervention type of style. So, she was suggested by her family to really be able to potentially benefit from this.

Kara Jones: I guess a contestant, I mean, because they had to submit.

Arwen Becker: That's true. That's true. Yeah, I think that's true.

Kara Jones: We were doing a new thing.

Arwen Becker: It was a little loosey-goosey there.

Kara Jones: A lot of guerilla-style directing.

Arwen Becker: Yeah. So, you and Randy talked a little bit and then you thought, “Okay. Well, maybe Arwen might be good as the financial mentor on that specific show.” So, I remember having a conversation with you and Jay. I was actually still sitting in my car parked out in front of my house and we were having this very lively, wonderful conversation. And then I don't know which one of you just kind of said, "Well, would you just be the mentor, the person who mentors her the whole way through this thing?” And I'm like, "It sounds interesting to me. I'd be happy to do it.” And I'm telling you, it was one of the coolest highlights of my life. I told my family when I got home. I said, “If I could do that every quarter, I absolutely would.” So, it was such a fantastic experience.

So, let me kind of bring back and kind of paint this picture of what this all looked like. So, we all arrived unbeknownst to this wonderful woman, right? Her name was Danielle. At the time, her family was in on this. They had suggested her for the show. She was battling I think postpartum depression, some financial issues, body issues, and things of that nature and just had been really struggling and so they thought that this could be a really great reset for her.

And so, I just remember that we were all at this trailhead for what felt like and I think was hours because all of a sudden…

Kara Jones: If you’d film.

Arwen Becker: Yeah, exactly.

Kara Jones: People think this happens like, "Oh, here.” No, it takes a long time.

Arwen Becker: And do you remember, I just remember park rangers coming and basically trying to shut the whole thing down before…

Kara Jones: Yeah. I think Jay said something about God and praying, and he had to say something and the guy turned his head and walked away and then we saw him on the trail or something, remember, and he just was like, I don't know. You see, that’s where my husband-producer comes into play like that’s his job.

Arwen Becker: He managed to get it passed and get it through because they were almost not going to let us and the whole thing was they were going to be if this woman, Danielle, accepted the experience, if she accepted it, she was going to go out into the wilderness for three days with five strangers and a camera crew. Awesome. I would never have the guts to do it.

Kara Jones: No. I’d be like hitting Jay.

Arwen Becker: I know which she was so gracious and she was such a sweet gal. And so, she did. So, all of a sudden, the camera crew comes out. Our family's talking to her and the look of surprise and Jay comes out and basically gets to the point to say, "Will you accept the experience?” And she did. And so, then I get pulled on screen and we get interviews and everything and then all of a sudden, she basically has her backpack handed to her, which has clothes and supplies for the next three days that her family put together.

Kara Jones: Packed by her husband. You know what I mean? Like you have to be really ready.

Arwen Becker: I know. You have to be brave as a spouse to do that. You know what I'm saying, to know. And actually, that's probably a lot of experience that Jay would have with Hoarders because I always wonder that same thing, too. It's like, gosh, it's got to take a lot of courage for the people who suggest a hoarder for the show to do that because of course that can go bad.

Kara Jones: Yeah. One reason I say the bad thing about the packing is because when we went to our Make A Wish trip, Jay, we were in New York, and we flew from New York from treatment to Make A Wish but he was back home. I had all my clothes packed on a – our suitcase broke. So, I was like, "Go get a new suitcase. I'm going to put all my clothes here and pack them.” He didn't pack half of them. He had like move them to another and he's like, “No, I didn't do that.” So, when I got there, I had to like rebuy all his stuff. So, when I say you pressed your husband’s back, I’m like…

Arwen Becker: Yeah, like thanks a lot! Yeah, totally.

Kara Jones: He was stressed, I should say. When your daughter's in treatment your mind is so not all the way there.

Arwen Becker: Totally. Yeah. So, she accepted it. So, kissed her babies goodbye and her husband and her mother and mother-in-law and I think maybe a couple of other people that she could not figure out why all these people were there, right, until obviously, this happened.

Kara Jones: Why are we hiking?

Arwen Becker: Right, exactly. Why are we standing at this trailhead for two hours? What's going on? And so, I remember it was like it was yesterday. I mean, this was September 1 of 2017. And so, here we were, it's Labor Day weekend, we're heading into the wilderness. I don't even know where we're going, right? And of course, you guys did. But we've got this camera crew and you and I are just hiking. We're hiking through the woods. The camera crew is behind us. Danielle is one step behind me. She's kind of talking to them a little bit. And you and I are just engaged in conversation, talking about our kids, getting to know each other a little bit more and it led into this conversation. I can remember it so vividly. That's why I said at the beginning it's so interesting how you can have a conversation that at the moment doesn't trigger to be so significant until something happens after it, and then it's like you package it up and you timestamp it, right? And so, here we were, it was a beautiful weekend. Oh my gosh, it was such a beautiful weekend. The Pacific Northwest, if any of you have never been here, it's just in the summertime, it's stunning. September is so good here. And so, it was warm. You have the evergreens, everything is still just lush and beautiful and green and vibrant, more shades of green than you can ever imagine.

And I just remember walking behind you and we're just talking, and you're telling me about this dental appointment that had occurred with your daughter, and then led to these other appointments, and I'm sure it's not going to be that big of a deal. And we talked a little bit about that. So, why don't you take all of us back to that moment and kind of paint a little bit of the feather of that picture of what led up to that conversation and then certainly what happened afterwards?

Kara Jones: Yeah. We were talking about how Hunter had gone to the dentist and the dentist had thought she had seen a tumor on a panoramic X-ray. And we had gone to her pediatrician and she didn't seem too concerned because most of the time, tumors in the jaw are benign like, I mean, 99% chance benign, they told us. So, we went back to the dentist and it had grown like within a week and we said, "We're calling Seattle Children's every day. They told us there’s an 18-month wait but we're going to call them every day.” But everybody tells us not to worry. So, we're really not that worried. Well, we see the dentist next week and she was like, it's grown like literally, she had it like an underbite. So, like it had grown in a week like I mean significantly in a week. So, she called Seattle Children's. We didn't know this until way later, until I've seen her interview but she fast-tracked us with Seattle Children's because they called us the next day and they were like, "Yeah, we'd like to get you in.” So, when we met you, she had just gone in for like pictures and she had just gone in for like an MRI and they were telling us that 99% chance, like I said, that we think this is nothing. So, we just went on with our lives. We have a television show to produce and do so we did it.

Arwen Becker: Yep. And you told me that day exactly what you just said. It was like, “Oh really shouldn't be anything.” I think you may have alluded to the fact that there was a very, very small chance that it could be cancerous or something like that, but it was just kind of that thing but we're just believing that she's going to be fine and it's benign.

Kara Jones: Yeah. I mean, I recall this Judah Smith sermon and he talked about how we don't know like what the future holds. So, we can panic and worry about it so much but then when we get to the moment, it doesn't even seem to like happen. We can go over the interview or go over that in our head, and then it ends up happening totally different. So, that has changed my whole outlook on things. So, I try not to like it because I'm a work out girl. So, I was like, "Okay, Judah, I'll work on this.” And so, that was it. I was like, okay.

Arwen Becker: Not letting it steal your joy in the moment.

Kara Jones: I mean 99%, I'm like, “Oh, good God. We got God.”

Arwen Becker: Right. I know.

Kara Jones: I mean, on my side. I mean, we still have Him on our side.

Arwen Becker: Yes, of course. Of course. So, then you guys get home. We wrap the show. It was so phenomenal. We had such a great time. Everybody just loved it. And then what happened in the preceding week?

Kara Jones: So, then she started having, well, they got the test results back. They had taken the tumor out and we got the call from Dr. Susarla and he said, “You need to go to Children's and see Dr. Pinto. He's a neuroblastoma specialist.” I had heard that word before because one of my MOP friends, moms of preschoolers, their son was diagnosed with it, but he had stage one. So, he had like two rounds of chemo. I still wasn't thinking in my brain, neuroblastoma. I just hadn't known I heard that. And so, I was like, “Okay.” And then we go to Seattle Children's and then they send you to the cancer floor like send you to the oncology floor and you look around and your heart like literally drops. So, we walked in the room and Dr. Pinto, he said, “Hunter,” he was like, "She actually looks really good for a stage,” actually, they didn't know. They hadn't done any staging for her yet.

Arwen Becker: So, they had like deep pathology hasn't done yet.

Kara Jones: They just had taken the tumor and they said neuroblastoma. So, he was thinking that maybe this is just stage one and neuroblastomas does not present itself in the jaw. So, him and Dr. Susarla were like really talking. They were going to like reform her jaw, take her whole jaw, and put like a fake jaw in because, well, in the coming days after her scans came and they said it on September 21, we got the news that it was staged 4, our doctor was shocked. Usually, like stage 4 means these kids are finding out in an ER because the tumor is so large, it's blocking things where they can't walk. Like Hunter was like running around. She really didn't have any symptoms until that moment until she just had a cough that she couldn't get rid of. And that was like lingering from like the dental so it was like okay. And so, when he said that it was stage 4, he was surprised because she was the healthiest stage 4. Like, it had to be like God in all those ways because of how the dentist took a panoramic X-ray. They never do that in a four-year-old. She just said, "Do you think Hunter would stay still?” I’m like, “Why not? Try it.” If it weren’t for her, we wouldn’t have found out maybe or Dr. Pinto was saying maybe three or four months later, like in Hunter the tumor would have been, I know this sounds terrible, but she only had a tumor the size of a navel orange. We're talking about kids that have the size of tumors of a football.

Arwen Becker: Wow.

Kara Jones: And watermelons. So, it was like really God's timing like all that.

Arwen Becker: And so, when they told you when you heard those words land that she had stage 4 neuroblastoma, what in the world went through your mind?

Kara Jones: Well, I mean, I prayed and I literally sat in a fetal position probably for the whole entire night because I couldn't wrap my head around it. I couldn't wrap my head around that my husband just he couldn't take it and he had to go to sleep. And I was like, "How are you going to sleep?” But you know, people process things so differently and we gave ourselves like the day to really take it in and then we, I mean, God had a plan like we said how can we, after what we had gone through that summer like we had no funding. We had nothing like we were spending some of our own money on this stuff. He was making all these things crazy miracles happen like how could we not trust Him at this moment. So, like I said, the show really was for us, like God was preparing us for the next season we were going into.

Arwen Becker: Right. But I mean, I have to imagine with the limited knowledge that you had of neuroblastoma, because I have some good friends from high school who lost their son to that. He was the exact age of my first son when he was diagnosed 18 months, and he passed away a little past his third birthday. I mean, it's the largest memorial service I've ever been to.

Kara Jones: I see my friends lose their babies every day and I have to like this month, for healing, I rarely go on Facebook because so many of my friends like neuroblastoma, they told us it's a 50% chance.

Arwen Becker: Even at stage 4 she's 50/50 chance?

Kara Jones: Well because they have to know. They have to see if the treatment will even work. So, like because if the chemo doesn't work or anything, neuroblastoma comes back with a vengeance like you don't want to hear the word relapse because it's so smart.

Arwen Becker: Wow. So, I just remembered because Jay, sorry to interrupt you, really quick but Jay because of his work in TV and being a producer, he made the choice. I'm sure you both as a family made this choice to document everything and I remember he was utilizing social media to show this journey that the two of you or going with the four of you, I mean, really your family, your son, and your daughter, and everybody else on the periphery too, but to really document what it is that you as a family went through. I remember watching that first video of you guys getting out of the SUV and taking a little backpack out. This was going to be your home, Seattle Children's. How many days did Seattle Children's end up being your home?

Kara Jones: Okay. We stayed the night at Seattle Children's 138 days. I can't even, I mean, I have like beads of courage to tell you how many days we actually went there but Hunter was there, she wasn't inpatient. We were at the hospital a few times a week and if she ever spiked a fever or anything, we were in the ER within an hour of that fever.

Arwen Becker: Wow. Because there were a lot of times she couldn't even be home because of fear that she would get sick with something else.

Kara Jones: Well, usually that's what happened. We were home and she'd come home and with the chemo, she gets to zero counts. And so, anything, cold, I mean, any little thing like literally anything could have killed her like a cold could have killed her. We know if he died from a cold. So, like when people are like, “Oh, COVID,” we're talking about a flu killing a kid because they're at zero counts.

Arwen Becker: Right. Of white blood cells, is that what you mean?

Kara Jones: Yeah. But she has zero counts and so she would get something and she'd spike with fever. We wouldn't know what it was, we go in, and they do all these tests or cultures that when she gets a fever, that's an indication of an infection. But we were blessed that she never once had a line infection. Well, this is a miracle. She never once saw the ICU which is like that's not, both those things are very rare in neuroblastoma.

Arwen Becker: And she had during that first year and maybe it certainly took me longer than that, she had the line that goes into her nose because that gets where? Into her stomach?

Kara Jones: Into her stomach. Yeah, Jay and I from the very beginning, we met the first day they had a neuroblastoma parent conference, which was actually really weird. I mean, I'm glad we were late to it because I'm glad we didn't find out what they were talking about but we had met some parents there and we're still really good friends with them. Like, we just went on vacation for healing together. We all get together and we do like this healing weekend and we raised money together. We met these families and we were like, "What did you do? Like, tell me like tell us,” and one of them said put a tube in and start doing natural food. So, we put a tube in because we used to call her always hungry Hunter. The first day of chemo, she wanted nothing and I was like, I can't deal with this. So, I mean, I put a lot of work on me because we put a tube and, in the beginning, usually, they wait for a while to put a tub in, but we put a tube in, in the beginning, and started her on food called Nourish. It was all organic, natural food and she was fine.

Arwen Becker: Because she would not consume it via chewing it. She could do that. Is that you're saying but she just had no appetite to do so?

Kara Jones: At times, she had no appetite and because she would throw up. My son made a comment one time and it actually broke my heart because he had gotten the stomach flu and we were laying there and I was lying next to him and he said, “Mom, you're really good at that throw-up bag.” And because I would be lying next to her and I would have to like mom feel that she's about to throw up because if not, I mean, we have sheets and layers of sheets on layers of sheets, because we couldn't get through a night without throw up on our sheets for months, years.

Arwen Becker: Wow. And so, that was something that you guys made as a choice to use the tube early on.

Kara Jones: Yeah.

Arwen Becker: And I remember I think, because how often did that have to be cleaned, pulled out?

Kara Jones: It's supposed to be monthly, but then that gave her like a break because she would do it herself and they said as long as anytime like came out because she didn't like new ones because they were very…

Arwen Becker: Rigid?

Kara Jones: Yes. So, she got away with a lot of things because she would actually insert the tube herself but if we could pull it out when she throw up because a lot of times, she throw it up but if we clean it real good, they would let her use that same one. So, she could get away with it for two months but they usually would make her do it monthly. And every day, we had to change her line.

Arwen Becker: That's what I recall. Okay.

Kara Jones: She had a Hickman line and every day, Jay or I had to flush it, and then weekly we had to change the line.

Arwen Becker: What is the line going into?

Kara Jones: So, that's where her chemo, all her medicine, so if she needed a blood transfusion, if she needed chemo, if she needed immunotherapy. When they took her cells for her because she did a stem cell transplant so they took her own cells. They actually took the cells stents from the Hickman line.

Arwen Becker: Okay. And that goes into what part of the body? Like arteries and stuff?

Kara Jones: Yes.

Arwen Becker: Got it.

Kara Jones: So, she had two of them so that they could run chemo and they could run all different things. Like most of the times, she would have two chemos running at once.

Arwen Becker: Got it. And I remember one video may have been one of maybe it's the only one I remember. It came with a disclosure or disclaimer at the beginning that it was only about three seconds long but it was the awful part. It was you trying as a mom to help her and her screaming at the top of her lungs because she just was done. She was just done with the fight in that moment. Just to see you as a parent trying to help your child and yet you're having to constantly hurt her in the process had to have been just the worst part of it.

Kara Jones: I feel like, I mean, I have to numb a lot of that out of my life like literally numb it.

Arwen Becker: I have to believe that there were people along the way, well-meaning people that would say things to you that just were not that helpful.

Kara Jones: Oh, yeah.

Arwen Becker: Why didn't you tell us that? Because some of us who haven't been through that, we need to know what things were not helpful.

Kara Jones: So, my biggest goal when I was there was that I was not there to make friends. If I made friends then, okay, my number one goal was I was there to be Hunter’s advocate. I had to be her number one advocate. And I remember this one night, Hunter was like crying in pain and we really didn't like to use morphine and things. We didn't like to use hard drugs with her because I have family abuse of it and a lot of people like they can't be addicted and I'm like, “Oh crap, I've seen her actually withdraw from morphine when she's come home.” So, we try to do as much natural stuff as possible and I had this nurse tell me like, “I'm really tired of her crying. We should just give her some pain medicine.” And I was like, "No, we're not giving her pain medicine. We need to figure out why she's crying. What is causing these problems?” So, of course, I'm like, “I want an X-ray, I want this.” And sure enough, it ended up being gas and all she had to do was take some gas drops that are like nothing. She never was my nurse again. I said, "You have to deal with her for a 12-hour shift. I have her 24 hours, seven days a week. I know her.” And sure enough, it was like I said, gas, and you start to know your kid. I mean, you know your kid but your mom instincts, mama bear really comes out when your kid’s suffering.

Arwen Becker: And I think you have to trust that. I think that that is such a significant piece of a process like this or just even sometimes in a broken bone or there's just something that you're just going even though the doctor is saying, "No, they're fine.” You're like, "But something just doesn't seem right. And we as women have this significant intuition that oftentimes we will disregard because we can't adequately explain why we feel that way. And so, we second guess it or we allow people who have education and titles and are very intelligent to tell us something contrary to what we believe. And so, I commend you for that to standing and fighting. Like you said, you had to be her advocate. She is four, and even if she was 40, she's going through hell on earth. She's medicated. She's having all of these things being done to her. You can't process that. You can't express well. And so, you need somebody who can stand beside you and go, "Nope, nope, this isn't working,” or you need to go further or push past it. So, I commend you guys for doing that.

Kara Jones: Thank you.

Arwen Becker: Did you ever have people say to you because it seems like I think it's just a thing that people say when it's kind of like somebody goes through loss, and they don't really know what to say like, “I'm so sorry.” Or they say, “I just could never go through that. I mean, I just commend you. How could you go through that?” Did people ever say that to you?

Kara Jones: Oh, all the time. All of the time. The truth is, I mean, I would tell them, “You would.”

Arwen Becker: What choice do you have?

Kara Jones: You don't have a choice.

Arwen Becker: What am I going to just sit down and just watch?

Kara Jones: It came from a lot of moms, which I mean, and I said it before too like I was sitting in a mom’s meeting with my friend, Amanda, when her son was diagnosed with neuroblastoma too, and I sat there and I kept saying, “Oh, I could never. I can never. I can never.” But I promise you, when you get a diagnosis like that, you can.

Arwen Becker: Yeah. Because they're your kid.

Kara Jones: Yeah, you're going to fight for them. I mean, I hope you're going to fight for them, I just hope.

Arwen Becker: I think they are.

Kara Jones: I feel bad for anybody whose parents don't but I’ll fight for you. Just call me. I’ll fight.

Arwen Becker: Exactly. So, we'll talk about some of the other specifics, but what would you say? And as we're still kind of talking about this early on process because I want to get to where Hunter is now but what would you say and looking back for yourself in that early time period to a mom out there who maybe is just receiving a really significant devastating diagnosis, maybe it's their spouse, maybe it's one of their kids. What would you say to them?

Kara Jones: Put all your trust in God. Put all your trust in Jesus, our faith, I mean, you have to. I mean, I have so many Bible verses that I love. Isaiah 43:2, "When you go through the deep waters, I will be with you. When you go through the rivers of difficulty, you will not drown. When you walk through the fires of oppression, you will not be burned up. The flames will not consume you.” Sometimes we don't give ourselves enough credit.

Arwen Becker: Yeah. But Randy had just given me a quote. It said what was it? Something like she didn't know that she could until she had no other option or something like that. You know, it's like that is life, right?

Kara Jones: Even in this process we have gone to, I've gone to retreats with moms and women and I'm telling you, when they throw their problems in a bucket, I would probably just want to take mine right back. Like, I know that childhood cancer sounds terrible but when people talk about their spouses cheating on them, and all these things, you know, God gives us what he, I mean…

Arwen Becker: What we can handle. Yeah.

Kara Jones: Sometimes I think he gives us what we can't handle too because he's made us for amazing things.

Arwen Becker: Yeah, exactly. Were there some things during that time that you sensed that people really wanted to be helpful but didn't really know how to help you?

Kara Jones: Yeah. I think when you get that diagnosis, we lost a lot of friends. We lost family members to it. We lost. It was crazy because strangers became family. I think it just was so much on them that how do you take that news and like to be there for somebody? My life was everywhere like when you have a relationship with somebody, it takes time, effort. I had no time, effort, anything to put into any relationship during those three years. I put my everything into Hunter like my marriage. Our marriage failed for a while like that's what we're working on right now. It takes a lot of time for healing. Healing just takes a long time and I think it was too much for them and they just couldn't take it and it was easier to just back down and say goodbye.

Arwen Becker: That must have been hard.

Kara Jones: Oh, yeah. I had to mourn friendships that I was like I never thought I would have to do but you know what, God, he put other people in our lives that he put them there for a reason. And he took the other people out for a reason, too.

Arwen Becker: Right. Right, exactly. You know, it's just the season of life. They had come and it had gone, but it's certainly on top of everything that you guys were dealing with at the time. It probably just seems like an insult to injury. You know what I'm saying?

Kara Jones: Yeah. Like how much, the tumbleweed is just going to keep getting bigger like one more.

Arwen Becker: Right, exactly. And I want you to kind of continue on in this process. So, here, your daughter's battling. She's battling for her life. You guys are doing everything in your power. You've basically had to try to put your life not completely put it on hold because life still clicks by. You still need to make money. I mean, you still have house payments and groceries and having dinner, and taking a shower. I mean, just probably some of the most basic things just became so unimportant but yet, life still continues on and people are having parties, and they're getting married, and they're doing all this stuff. And so, at what point did it look like things were working? How long in this process are we at this point where there was a significant ray of hope that you were going in the right direction?

Kara Jones: Well, it's very difficult because we lived our lives like COVID, like this COVID. We wore masks to the grocery store. I mean, I used to get people who would put their fingers up like X-ing me because I was wearing my mask because I was worried they were at the store sick. And so, it was a lot of loneliness. Like you're very lonely. You can't go out like my daughter, me going out is risking her getting sick. So, if I go out with my friends and pick up a cold, I bring that cold home like we live in a bubble. So, pretty much I feel like we still live in a bubble. I took her out for the first time to taking this class at church and I took her to the daycare for the first time because Jay was out of town and she got a cold. It's like we lived in a bubble for a long time.

Arwen Becker: Yeah. And so, how long were you into this process? I mean, you lived at Seattle Children's for 100, and how many days?

Kara Jones: [headliner]So, we lived at Seattle Children's until, so we started in September of 2017. She finished treatment in January 2019 and then we enrolled her in a vaccine trial at Memorial Sloan Kettering in New York. It was seven shots. We had to go over there five times through the year and it was to bring her chances of survival. So, they told us after all the things she went through, she went through five rounds of intensive chemo, two stem cell transplants, 12 rounds of radiation, six rounds of immunotherapy, and they still told us she has 65%, 75% chance of survival. That's it. So, this vaccine was supposed to bring her chances of survival to 90%. So, we did it. We fought really hard for it. Our insurance denied us, denied us, denied us. We had to file for financial aid. We had to fight just to get there. And we did. We kept saying if we don't do this, what happens if she relapses? Then we'll be very mad at ourselves that we didn't do this for her. That’s not every parent's choice. We have friends and they're like, "We felt done. God told us we were done.” And that's great. Their kids are doing great. We didn't feel that from God. I felt like God was saying, “I give you tools. Use them.” That may be hard but you've got to get there.

Arwen Becker: Right. Every endeavor to heal yourself. But I think you've made the point and I think that that's really important for any of you out there to hear is that everybody's different. I mean, this is Kara's journey with Hunter Rose and their family’s choice. Everybody faces certain moments that they just know inherently that they've come up to that boundary and they're just kind of like, “Okay. We've gone far enough. So, it's different for everybody. I think that's important for you to point that out.”

Kara Jones: I mean, we've finished and we were supposed to finish March of 2020 but COVID hit.

Arwen Becker: Thanks a lot because you need more of a bubble.

Kara Jones: It was actually a miracle from God because we were going to be in New York like when they shut everything down. We were supposed to be there that week and it was absolutely crazy. So, like, Sloane called us and was like, "If she has a cold, anything, please don't come.” And so, of course, she got a cold and I was like, “We ain’t coming,” and we didn't finish treatment until August of 2020. So, we officially finished August 2020 so three-year process. I mean, she still has two more scans but once she hits these scans in March, she'll have another scan in the following March and that will be it for her. She just goes on to survivorship.

Arwen Becker: Wow. And so, tell us about her now. So, she is how old?

Kara Jones: She is seven. Well, she’d be more like seven-and-a-half. She’s almost eight.

Arwen Becker: And she's a beautiful girl.

Kara Jones: She’s just a ray of hope. She looks at life so differently. Every day is like, "Come on, Mom, why aren’t we doing this?” Like, I have to be on my toes because she sees life in just a beautiful way. You wouldn’t ever experience that unless you went through this. Like she has ambition. It's so funny. Like, at eight like, "Oh, let's do this. Let's do my hair. Let's get this done.” She kind of reminds me of you, Arwen, like go get it. Yeah, it was like, “Let’s get up. We're starting our day. What are you doing? We’re not sitting around. There's no time for that.”

Arwen Becker: Yeah. She's got things to do, places to go, people to see, and no fear behind it.

Kara Jones: Yeah. We don't see anybody and really, we don't go anywhere but like we can go to walk around here or there but she always has her drive and her look at things or she's just wise beyond her years.

Arwen Becker: Yeah. And she got to be like an honorary police officer. Isn’t that what she got to do?

Kara Jones: She like met the mayor. She gets to do a lot of things. I mean, she got to fly in like private planes and things but I would trade a healthy kid for any of those.

Arwen Becker: Oh, of course. But I think her best for life, it reminds me of that, who’s Faith the country singers that they're married?

Kara Jones: Faith Hill and…

Arwen Becker: Faith Hill and what's her husband's name? Why can't I remember his name?

Kara Jones: Tim McGraw.

Arwen Becker: Yeah. Tim McGraw. Yeah. So, I was just thinking that one song, Live Like You're Dying, which I believe is his song and that's the truth of this. I mean you guys have come so close to the edge and now you're getting to see life through a new lens. I think that certainly is where you look at God and you go, “Okay. I still don't see all the picture that has to do with this experience but I know that there is life after tragedy, after crisis.

Kara Jones: Oh yeah.

Arwen Becker: And you guys are getting to experience that but I think it's really important to point out something that you had said earlier that once the main crisis is over, then you guys, it's like, now you're in recovery. So, I mean, you guys have dealt with so much focus on her that you alluded to. It took a major toll on your marriage. You probably know statistics, I don't know, you probably heard them throughout this but marriage is trying to survive a child going through this. Whether the child lives or the child dies, a lot of marriages don't make it because everybody focuses on that one thing and then all of a sudden, now we're facing going,

"Wait. Who is this person standing next to me again?” You know, that habit.

Kara Jones: Yeah. Like I said to Jay, he used to always put me first and we were so used, we had to put Hunter first for so long. It's like he's now having to train himself to put me first because we so like, if she's like, “Oh, I feel like he's like rushing to her,” because it transcribed in our brains for three years that she was number one and that's very difficult for our son like how much he has gone through. People, they don't realize that he went through a lot of trauma. He picked up from school and go, "Where am I staying tonight?”

Arwen Becker: Right. And who am I staying with tonight?

Kara Jones: Yeah. I don't want my 7-year-old feeling that way.

Arwen Becker: Right. But it is just part of the fallout.

Kara Jones: Hunter got a fever. “Sorry, buddy.” You know, like, "Ugh.”

Arwen Becker: Yeah. And I mean, I have to commend you both because getting through this, getting to the other side of this, continuing to now is that, that Randy kind of talks about. It's like the shrapnel that's still around, and it's those trigger reminders and you run into it every once in a while, as you're still kind of cleaning up life, right? And getting back to the new normal. It’s that term that just becomes overused.

Kara Jones: We get talked like, "When are you guys going to be back to normal?”

Arwen Becker: I don't think normal for you guys is ever going to - it's never going to be that. And so, tell us about this little girl. She's now in, well, she's not in school, thanks to COVID.

Kara Jones: Well, she's homeschooled thanks to my parents. My dad and stepmom are amazing. They take her three days a week. She's in first grade. She's learning to read and it got really difficult. She wears hearing aids and so her hearing aids have been falling out because she's been growing, which is great but we have an appointment next week to get fitted for new hearing aids. Sounds and things are different for her like we've learned that she reads lips so like even going to school or anything, we would have to tell the teacher to wear a shield because it would just sound muddle to her. She has a 95% chance of a secondary illness because of all she went through. So, we have that on radar.

Arwen Becker: Yeah. Are the hearing aids, is that a fallout from chemo?

Kara Jones: Yeah.

Arwen Becker: Is that what that is? So, just some secondary stuff that comes from what you're using to fight it.

Kara Jones: Yeah.

Arwen Becker: Wow. Well, I remember one of the coolest things about you as a woman is, we finished this experience, right, this weekend, this Labor Day weekend, and we've reunited this changed woman back with her family, at least I was. Just there was a miraculous.

Kara Jones: You did a great job acting. Yeah. Good girl.

Arwen Becker: Yeah. I remember is you and I were standing there as she was still on camera talking to her family and her kids and all this kind of stuff and I looked over to you and you had these dog tags around your neck and I was like, “Oh, what is that?” And you kind of showed it to me. I'm like, “Oh, I love that.” And it was Joshua 1:9, which I want to make sure that I get it right. I have that right. It said, “Have I not commanded you. Be strong and courageous. Do not be afraid, do not be discouraged, for the Lord, your God will be with you wherever you go.” So, you were wearing that on that experience and then you in this private moment of you and I with all these people around just whispering to one another, you took it off, and you gave it to me and I have held onto that. I have purged nearly all of my jewelry and that is one thing that I still use and love.

You're such a woman of faith. There is zero question in my mind because I saw it right from the beginning, as you guys were going through this, you publicly and loudly kept declaring your faith that God would get you through this, that God was still on the throne, that no matter how hard it was getting, you still believe that God was awesomer. Tell me about that. Tell us about that God is awesomer thing and then tell me about your faith, because I know that that is such a big piece that walks you through this.

Kara Jones: So, my husband always, I know that he makes fun of me but I always make up words. So, when we first did our first video, talking about we got to tell people that Hunter was diagnosed with stage 4 neuroblastoma and we had talked about our show and everything and I just said, “Our God is awesomer than cancer, than anything.” And my husband's like, "Awesomer?” And then I thought about it. He’s like, "That's not a word.” But it's been our word. God is awesomer. He's awesomer than anything. So, I mean, I have so many miracle stories, and I could go on and on. I'll tell you about one recently. So, Hunter spent 138 days in the hospital and I used to pray when it was finished which she didn't spend any more time in the hospital that God would give me back the 138 days and all the time back with my family, which seems like a really high 138 days. I'm working. Jay’s working.

And sure enough, COVID hit. I got laid off on March 16 and was told that I go back to work on August 2. And if you do the math, it's exactly 138 days and that's God. That's not anything that I'm answering a prayer. And then August 2 came and, I mean, not that I was praying for COVID to continue but like I always pray that I get all my time back with Reeder, all the time that we spent. And I'm still unemployed. I mean, I hope I go back to work soon. We have been really just enjoying our family time playing games and just taking in this time that God has really given us back.

Arwen Becker: Yeah. Oh, I'm so glad to hear that. That is so wonderful. Oh, I love it. I love it. Well, I'm so honored that you would take the time to talk through such a tough part of your life.

Kara Jones: Well, I’m honored you wanted to interview me.

Arwen Becker: Oh, my goodness, it's so powerful. So, when you look back on these years, what would you say for you, personally, I mean you know we're not here giving advice saying this is what you're supposed to do but for you, what would you say were maybe the three things that you really took away from this process?

Kara Jones: Well, God always has a plan. It's definitely not our plan like we want it to be our plan but it's God's plan. It's amazing. We look at family different. We look at time with people different. We look at time different, making moments and memories. We also know that we have to plan for our financials better. I know you can't really plan your kid getting cancer but like this year, we started anything with our kids. Because we’re getting ready to move so we are taking a lot of their clothes that they don't want anymore and I'm selling in our marketplace. So, we're taking that money that they make at the marketplace, and then like this month I think Reeder made like $40 and Hunter made $50, and then we're going to have them start investing at each month. Then my dad has been teaching them about the stock market because they have some stocks and then they talk about where they want to put this money. And so, we've been trying to just do better for them because we weren't taught. I buy a lot of things at the goodwill outlet. So, like one of Reeder's coats, he made $25 off it. I think I paid $2 for it. I’m like, “Honey, good job!”

Arwen Becker: Man, that's a rate of return.

Kara Jones: It’s all good but, you know, they're learning and it's fun because they're like, "You know what, I don't really wear this much.” And so, we’ve just been learning it this year.

Arwen Becker: Yeah. I want to interject one thing because, yeah, you had said you can't plan for your kid to get sick this way but I do want to make sure that people know there are companies. Ours just happened to be Aflac but years ago, we ended up getting what would be called a cancer policy. So, we have an accident policy. This was like I had three boys and so, it's anything that happens externally. So, anything that happens to them, which broken bones, Randy took a utility knife to his hand, trying to fix something just these things that happen that way. So, that's actually come in handy because of our boys. But the other one that I hope to God I'll never need to use is our cancer policy. And it's, I don’t know, probably $30 a month or something like that for our entire family. And it's to cover the fallout, because again, if your kid’s sick, it doesn't mean that you still have your full faculties to go to work. You can’t.

Kara Jones: Jay didn’t work. He couldn't and I didn't make him. I told him he couldn't travel. I mean, we just look back at our taxes, and one year we made negative $1,500.

Arwen Becker: Wow.

Kara Jones: Yeah. Like, we cried and laughed about it. It’s like God provided like, literally how? What?

Arwen Becker: It’s not impossible.

Kara Jones: That’s like impossible.

Arwen Becker: Yep, exactly. So, I just wanted to interject that because a lot of people might not know that exists. It's not just cancer.

Kara Jones: The thing that really got us that we learned through this was that a lot of families who get childhood cancer, you have to quit your job. You don't get help. I had to quit my job. My income, that was, I mean, Jay, like, he's an independent contractor so his job is do this. My job was a secure job and I had to quit that job and nobody wanted to help. Nobody wanted to give money. I can tell you like I had to fill out so many applications. I'm thankful for so many foundations who helped us through it because if it weren’t for them, we would have never survived.

Arwen Becker: Right. And thank God for that. But what you just said, though, is what I see over and over again is that predominantly in families, the mom is going to be the one that steps away from work to take care of their kids and the lasting effects that that can have, good thing is you guys are still pretty young, but the lasting effects of caregiving for women are that you're not putting into retirement accounts, you're not feeding into your Social Security, you're not doing these things. So, it's not only just the negative financial impact of caring for a child who is now needing all this additional care, but it's the loss of income, it's the loss of retirement income, it's the loss of experience that allows you when you do finally get to go back out to the workforce is like, well, you haven't worked for the last four years or whatever. What are your skills?

Kara Jones: I know. Like really, you're like, "Why didn't you?” And then when you tell somebody when I went back to work when I'm telling my job, “Oh, yeah. Well, I didn't work because my daughter had cancer,” and she's still in treatment but she's doing really good. It's like people they don't want to hire. So, they took a big chance. I mean, not that they took a chance on me but I'm thankful because that was when you have a three-year gap and you say your kid is in treatment still. It's kind of like, "Oh, gosh.” And I had to leave next week, by the way, to go to New York for treatment.

Arwen Becker: Right. Totally.

Kara Jones: Please give me a job. Please, I’m begging you. We’re starting over and, hopefully, you'll like to guide us.

Arwen Becker: That’s right. Well, my book is definitely a good place to start because I have seen more women than I can even tell you, Kara, that have started at less than zero in their 50s. And so, that's the beautiful part. You and your husband are still together. You're still focused on the same thing. You haven't like ripped everything apart, right? And so, just going, okay, well, this is where we're starting and just continue with the basics and everything and you guys are fighters, obviously. And if you do it together, and certainly continue to keep God at the center of it, it's all going to come together beautifully. I know it will. So, I know we talked a little bit about some financial pieces, but kind of the last three rapid-fire questions. What is a great piece of financial wisdom that you've been given?

Kara Jones: From you. When we were sitting on that log, it was just mind-blowing to see how much money you actually could get to a million dollars like so, yeah, from you.

Arwen Becker: The basics of compound interest, which your kids are learning. That's the beauty.

Kara Jones: Yes.

Arwen Becker: That's awesome.

Kara Jones: Like I said, I want to do better. I want my kids to do better. And like they're really cute like Reeder’s I was like, "Oh, you want to invest in Fortnite, buddy?” He’s like, "No, mom. Epic Games.” I was like, “Okay.” And he pays attention. He's like, “I want to do Amazon. We get a lot of Amazon boxes.” Oh, like good. He like looking at things. I'm like, well, we get a lot of Amazon boxes because we don't get to go out. I guess it’s true Amazon does come a lot.

Arwen Becker: No doubt about it. I love that. That's so great. And then what is a favorite book and why?

Kara Jones: Okay. So, I have two books. So, one book I just read was this spiritual leadership by J. Oswald Sanders. I got into a position at church where I was going to be a leader this coming year and I was like I don't even know how to be a leader and then COVID hit and we couldn't even get our group together. And so, the church put on this class for us and it's been just great like from the beginning of this year, I wake up every morning early. I've never done that in my life. I sit in my sauna. It's my time with God in the morning. I do my devotion. I'm up before like two hours before my kids are in and I'm in there for an hour.

Arwen Becker: So proud of you.

Kara Jones: Doing that. And then this one is Thirty-One Prayers For My Husband. This is what I'm doing in the morning because we're really working on our marriage and I guess it goes into my favorite quote, which you probably will be asking. Right now, my favorite quote is by one of my mentor moms and she used to say to me, "If you're not praying for your husband, then who is?” And so, that's like really stuck with me and we're like really working on it and I would feel like, “Oh yeah, I’m praying for my husband, but I have never really spent like a lot like deep down.”

Arwen Becker: Direct.

Kara Jones: Yes. It’s like I can be like, "Oh God,” and it's like my husband's doing this but never like diving deep just into praying for him.

Arwen Becker: And who wrote that book?

Kara Jones: Jennifer Smith. And her husband has one too. He made a male one. So, yeah, that's my devotion and then my book that I'm reading is The Spiritual Leadership.

Arwen Becker: I'm so proud of you getting up early in the morning.

Kara Jones: I know and that book like really just you have to be disciplined and I never really was disciplined.

Arwen Becker: Yeah. I think my kids were about the age of your kids when I kind of had that God moment where he was like, "You need to get yourself up an hour early.” I'm like, “I don't want to see a 5 on the clock.” Everybody wakes up at different times and goes. I just go to bed early, but it was life-changing for me. I mean, that was well more than a decade ago, but it was just one of those things where I just felt like my life was dictating everything instead of getting up early, doing the things that you're doing, what do I do to take care of myself first, so I'm ready to face all of these other pieces to be held for my kids, to be present with my husband, to be able to be a good friend, and to be able to make good financial decisions, and all the pieces that go along with it. So, I really am so proud of you that you're doing that. That just pays a lot.

Kara Jones: And it's one really cool thing, too, is that my kids see me and the Bible. So, I mean, a lot of times I used to do my devotions on my phone and stuff but when they see my books and stuff out, they see my Bible there and that I think is good. I mean, because then it gets them like we were reading this the other day, they picked it up. And so, maybe instead of them just seeing me on my phone because they think I'm on Facebook, and I’m like, “Oh, I’m doing my devotion.” They’re like, “Yeah, right, mom. You’re on Facebook.” So, they really know I’m doing my devotions now.

[CLOSING]

Arwen Becker: Yeah. That’s true. There’s no Facebook in there. I love that. So, I know that Jay’s done a number of different things than two of you together. How can our listeners find some of the things that you two are working on or have worked on and plug into that?

Kara Jones: Well, you can follow Hunter’s page on Facebook. It's #PrayforHunterRose. We need to be better at updating but like I said, this month we’re trying to do dry like take Facebook off. We just did a podcast called On Mission. You can find it on YouTube. You can email me if you have any questions, karajones425@gmail.com.

Arwen Becker: Yeah, definitely. Well, you are such a wonderful woman, a great mom.

Kara Jones: I’m so glad we met. God put us together. So, it was so awesome.

Arwen Becker: I know. Me too. I think of the woman that you were prior to that because, again, marking lives prior to diagnosis and everything, and you were a beautiful, giving, loving woman who had a heart for people and for the things of God and you are just that, and a whole lot more. I'm so grateful that you would take the time to share your heart, to share your struggle, to be so open with it. And I just really, really sincerely appreciate you.

Kara Jones: Thank you for having me. I feel really loved. It was awesome.

[END]