Jennifer Van Syckle  0:00  
In this episode, we're again joined by Jennifer James as she shares the journey of her daughter and childhood cancer, Jennifer will also share about the importance of advocacy, and asking questions of the medical community. Thank you for joining us for this episode of talking health in the 406, where we're one community under the Big Sky I'm your host, Jennifer Van Syckle, longtime health care worker turned health educator.

Jennifer James  0:34  
He and Vivian set up camp and I think they were there for 37 days on the oncology floor.

Jennifer Van Syckle  0:40  
So your husband and Vivian were there impatient for a very long time. And then let's just pick it back up from there. So what did what happened she got the stem cell transplant and that herself started rescuing her, did she start to feel better, like immediately, or was it a couple more weeks or what it

Jennifer James  0:55  
was pretty late like they would even the they would let her come like to our condo for an hour or two, and then she'd have to go back to the hospital. They watch you really closely just because you they've you know, you have no immune system. And if something were to happen, you have to be right there. So it took some time. And then after that to, I think it was a few weeks, then she had radiation again. And then after that radiation, I think we stayed a week just to like, make sure she was feeling good enough to make it home. The hard part, though, during that whole time period is she had met a little friend because she had gone back to school at the school at the hospital and gotten to be really good friends with a little friend from Great Falls. And we'd gotten to know their family. And that little friend then passed away before in the amount of time because we were all hoping to come home together. And the little friend, she didn't have cancer, she had a different condition. But I think if you were to talk to Vivian about that period of time, that was probably the hardest thing was that she lost her friend during that time. Because you know, you're meeting people who are going through very similar things. And it's kind of a rough Wait a rough age to learn about loss like that.

Jennifer Van Syckle  2:03  
Had she even had her. She was probably six. I'm guessing at this point in time. Maybe she was seven, seven. Okay. Well, yeah, yeah. So

Jennifer James  2:11  
we came back and the little girl's name was Daisy. I don't know if her parents or any of her family will listen to this. But we just adored her. And so she came home to Great Falls. And we went to her funeral service, and then came home and started back in school. Not the way we had hoped to come home. But

Jennifer Van Syckle  2:30  
yeah, yeah. Wow. And so when Vivian came home and started back in school, at that point, did you guys feel like you were like, Okay, we had our stem cell transplant? We've gotten through that we've made it this far. We're good. Do you? Did you feel like I'm guessing you didn't have the cancer free clear sticker by any means?

Jennifer James  2:56  
Still on the every three months, um, you know, I think it was, my husband did a Caring Bridge page, which was really nice. Because we were able to get the message out there for ourselves to the people that loved us, we have a really great support network. And I think I would give that advice to anyone that we were able to, we were just so happy to be home, she was so happy to be home that we just really had to focus on that, that, you know, we were just happy to be home and to have been through that phase of it and just take it really one day at a time. And let everybody else celebrate with us that we were home. You know, I think that we really went into that kind of mode of living being thankful for each day.

Jennifer Van Syckle  3:36  
Absolutely. Oh, started back and guessing the hell on a public school system.

Jennifer James  3:41  
Yeah, we always joked she goes to a little school here in our neighborhood. And my husband always would laugh that she could smell like we thought we'd come home and it would take like, we'd give her a week or so. But it was like she could smell the school. She's like, Oh, no, I'm going to school. But it was always like so even when she was when she started kindergarten. And then when she went back, like just was such a huge piece of her sanity, I think and having it feel normal. I don't know if it was it was just her little friend group or the way she handled it. Or maybe the parents somehow it was just amazing. Like how supportive and loving all of the other families and kids were. I don't think she ever had anyone question her bobblehead, her feeding tube, because that's the other thing too. She wasn't she had to be on the feeding tube for a while we weren't able to just, you know, go off that cold turkey. And maybe the kids at that age, like it always felt like it was more curiosity. Like certainly there were questions, but it was never cruel. It was never like a teasing mean, it was more just a question and she'd answer the questions and then they move on and go back to playing whatever they were playing. So that was a benefit to her being as young as she was, whereas probably middle school like some of those ages might have been tougher, but the little kids they're pretty, pretty great about it. So

Jennifer Van Syckle  4:53  
academically had she been able to keep up thanks to the school out of Seattle Children's she was in the grade she was supposed to be and First,

Jennifer James  5:01  
I thought we'd come back and need a tutor. But they had, you know, her classes were so small, and they'd have a teacher and then one or two other volunteers there. So she'd go for two hours every morning in Seattle. And, and then she and my husband did a ton of reading together. And like, during the time, they were impatient, it was also the Summer Olympics. And so they decided they were I think a friend had suggested this, but they were going to make a flag, because a lot of the anesthesiologist or the different doctors are from other countries. So everyone they would meet from they would make that flag then and hang it up on the so we tried to come up with as much of those kinds of things we could come up with. So no, she amazingly was able to write just jump right back in. And the teachers here were great to just in supporting her and Yeah, awesome. And

Jennifer Van Syckle  5:44  
you know, it seems like every September when school starts, everybody gets sick, everybody gets the colds. And do you think of schools as lots and lots of germs running around? Did Vivian have to wear a mask? Was there any worry about the sickness from school? School? Germs?

Jennifer James  6:00  
No, really? This was pre COVID. Right? Right. Right. None of us were masking. I mean, yeah, looking back on it, it's wild to me that we because she and I, the second time around, we made a real point to fly home as often as we could, if she would have like a long weekend or a week off of treatment, we decided it would be important to get her back here as much as possible to be with friends and family. And so she and I would fly back and forth a lot. And never once did I put a mask on her. Well, that's the other thing too. You know, we knew her numbers. We knew how, where her immune system was at. And so then we could really gauge when she was more fragile than other times. And so we would make a choice to stay home if we knew like she was at zero. And I can't even remember at one point, I could have told you all those numbers off the top of my head. But maybe that's how we handled it a little bit too is that we because every week they were looking at her numbers to see where she was at.

Jennifer Van Syckle  6:52  
Then life carried on Do you have a seven year old in elementary school who was still having to get monitored for recurrence of cancer?

Jennifer James  7:00  
Three months, and we went about a year. And then she relapsed again? No, I know, right? And so this point, we're just like, wow, and the doctors and everybody's pretty stumped. Because it's the exact same location again, like the exact the surgical site, which is really unusual. Usually it will have metastasized, or the what the spot on the other kidney was never did anything just still okay. Yeah, yeah, it was it looked just like a little scar. It didn't even change during so we then and we let her be at this point. Now, you know, she's nine, I don't remember exactly how old he is. But she's fourth grade and been through a lot kind of more life than some adults have been through. So we let her be really involved in the decision at this point.

Jennifer Van Syckle  7:42  
And shutting off her life, almost half her life fighting it in that battle. Yeah. Okay.

Jennifer James  7:47  
Growing up in the hospital is how she would tell you to is that she spent, you know, the greater portion of her elementary life in and out of the hospital. But we had conversations with her doctors who at this point have become dear friends and made an appointment to fly to DC children's to see Dr. Dome, who's the protocol setting doctor for the US and decided just to go with a giant surgery and just remove the kidney and remove everything within the vicinity. And so that was a major major surgery. And then she said that she would prefer not to have any more chemo and radiation. And after talking to the doctors, we were confident with her decision. And the radiologist even said, you know, we could try again, I have a tool but you know, I totally appreciate and respect the decision. So had the big surgery done, we were there for that took about a month the recovery was so major in her stomach just did not want to like kick back in her poor little body to have just been through, you know, back to the whole zipper thing I told you, we'd been in and out about scar so many times now. And so after that she and my husband then went to Washington DC to see Dr. Dome, just because I wanted her on his radar if we had to, because we weren't going you know, traditional forms of treatment, were not going to be an option moving forward. And so we needed to understand if there were other options and if she could be part of any of the trials he was running. So it seen very

Jennifer Van Syckle  9:15  
many kids relapse. This like have this many relapses

Jennifer James  9:19  
with will typically with Wilms No, there's not many, she's definitely in her own category. And it would have metastasized to the lungs. And hers never did is just stayed right in that surgical site. And the traditional way of treating Wilms tumor is just to go ahead and remove the kidney. And again, you doesn't have to look back and analyze the decisions that were made but she's now 15 and knock on wood has been great all her checkups and we're now in the survivorship clinic. So it appears that the major surgery that now we're in. The other thing I didn't understand about pediatric cancer is that you don't get to just get better right now she's has all these chances of other types of cancer because of the treatment. So we have to watch really closely because of her skin. You know, it's as if she's had intense sunburns that nobody would have ever had as a 15 year old. So we have to watch for skin cancer. We she has an endocrinologist because it definitely mess with her hormones. And so we have to really watch that closely in her heart that chemo can be really damaging to kids hearts. And so you have to watch that really closely. And now that she has one kidney, she's, you know, considered high risk for kidney disease. So there's all these other and while we choose not to focus on that, and once on to negative, I'm so thankful that she's well and she's a rock star and she just like you would never know when you meet her. Most people in high school have no idea. So I was even nervous to share her story, because I think she really appreciates that she's not the kid with cancer, that she's been able to just be Vivian and she's very good at articulating. Like the drugs she's allergic to. We now know all her drug allergies and everything that she can and cannot have. And so a journey that she will be on for the rest of her life. Wow. And so is she

Jennifer Van Syckle  11:06  
having to be on any sort of maintenance medication? I mean, aside from regulating the hormones, any sort of like, low dose chemo or nothing.

Jennifer James  11:15  
She's no chemo. No, she's in all like honors, advanced placement, which chemo can do some serious damage to your brain development. She had a little bit of hearing loss, but not a lot, because they do monitor that as well. And she not surprisingly, wants to be a pediatric oncologist and use her story and her experiences to help other kids. So I think she just I'm in awe of her. She has a perspective on life that is so different than most kids her age. And whether that's I think I always have felt like she has an old soul wisdom about her. But a lot of it also has to be what she's been through.

Jennifer Van Syckle  11:50  
Thankfully, you had wonderful friends that let you borrow their condo let you borrow their house, how did you guys tickets do that all the way up to back and forth to Seattle, so much was very

Jennifer James  12:00  
one step at a time. I'm a engineer, and I was not working full time. So my husband was the primary breadwinner, and I was able to focus. And you know, all my efforts were on her. And then we also were fortunate that anytime, because if when my son was with us, if I had to end up in the emergency room with Vivian, somebody had to be there to stay with him. So when my husband couldn't be there, if because he could kind of work from there occasionally. And then he'd need to be here, my mom would come in, she would stay with us as well, because I couldn't be there by myself when they were little. And then when they were older, and he could be here then Vivian and I spent a lot of time there just by ourselves, trying to think how else it all kind of fell together. We had really great health insurance. That was huge. I mean, we really had to fight hard to get some of the insurance, get some of her procedures covered. My husband does government affairs, political work, and he kind of knew how to go about that. And unfortunately, I think a lot of families just think that when something's denied, it's denied. And it doesn't have to be like you can fight those things. And so we fought a lot of that, we spent a lot of time and energy making sure insurance was going to cover as much as possible. And then when we stayed the longer period of time to Seattle Children's, there was someone I would love to do this someday there was a man who had a condo complex, and he would let people stay there and you would just pay your utilities. And so it was his his child had also been treated there. And so it was his way of giving back to families who were going through something similar. The Ronald McDonald House is a great facility in Seattle, but it had no openings when we went and to this day, I think there's like a huge waitlist. And that's something they're trying to work through is how to provide that for families. And then our church, our pastor, occasionally, we didn't ever do a GoFundMe or anything, but he would just show up with an envelope with donations people had sent to us, and that we would use that for our airfare. We had friends who would also donate their points or their miles to us, so that we could use that for flights. And then the, we got to know the TSA really well here in Helena as well. And so then when she came home after her stem cell transplant, the TSA at the Helena airport, did a welcome home party for her and invited all her friends from school. And it was we had there's a video of it out there somewhere. But I when I say that we had an amazing support network, I don't even know how to articulate how incredible our support network was. And you know, we probably don't have the same retirement savings that some people have at this point. But that kind of became the least of our concerns. So

Jennifer Van Syckle  14:31  
Wow, it sounds like a bigger support network than you ever were to realize you had like the day before the sledding incident you probably couldn't have even imagined I mean it's amazing how people come out.

Jennifer James  14:44  
I had I joke about I like I had visions of like frozen casseroles showing up on our end I kind of like to cook I was like please like I will give you ideas of how you can help but please don't start shipping us casseroles or something like that. You know, because people do want to help like they want so badly to be able to help them do what they can. So yeah, we were so fortunate to have all the people around us.

Jennifer Van Syckle  15:07  
Did Seattle Children's have any, I don't know, like a patient advocate that helped you at all or any

Jennifer James  15:12  
they have that available in they have social workers, they have a huge and even financial support. Like if you need, they have a financial assistance, and they have someone who will go to bat for you with insurance companies as well. And then also there's so they would always also pick us up from the airport, they have like a service with a driver, because we got to know a family from Alaska. And somehow they even had their travel covered. I can't remember how that work. But yeah, if you ask, there's a chairman of the department within the hospital, but all they do is help families figure this kind of stuff out. Wow.

Jennifer Van Syckle  15:46  
And are there any other resources outside of that that hospital that you found beneficial, or that you would recommend to any other families that might be you know, I threw it,

Jennifer James  15:56  
there was a we've maybe received a donation for travel from the St. Peter's Hospital Foundation, I don't know if they still do that. There are a lot of organizations out there, grants, different things you can apply for it. The other thing that was fun, and I don't know how active This is anymore, but it was this monkey was so there was a big monkey that would sit in Vivian's stuffed animal that would sit in Vivian's chair at school. And then she had a little monkey that was with her in Seattle. And so then when she would, because we would FaceTime her class. And so bananas was the name of the monkey. And so he would be sitting in her classroom, and then they would take him on all the field trips. And so then they would like, take pictures and send them to Viv, so that she got to see, you know, where bananas had been. And then a different friend would also take him home, like on spring break or Easter break, and then send pictures. And you know, it became a neat way for her to connect. And then she had Jr was the little one was what she called him. And so then she would take pictures of him when she was going into different procedures, or we were in the hospital or we were doing different things in Seattle. And then that's how she would share back to her class. Some of that well, while the financial was huge. Some of those other things, looking back on it were almost as important because it kept her so well connected with her friends and teachers and with home because she really, I think for her the biggest challenge was being away from home probably for all of us being away from home was really hard.

Jennifer Van Syckle  17:22  
Oh, man, I can imagine. So I mean, that long. And just you know, especially in a hospital situation, facing some, you know, very, very tough days. Yeah, that's amazing. It's

Jennifer James  17:33  
so unfamiliar, I can remember one of the first nights we needed a thermometer because they want you to monitor their temperatures so closely. And so I didn't even know like everything is so unfamiliar, right? You don't know where you're driving, you don't know where the guests like everything was just and you're in this urban and we're so used to our nice little quiet neighborhood. You know, it just Yeah, it was exhausting to have everything be so unfamiliar.

Jennifer Van Syckle  17:58  
And then do you have any other advice, any advice you'd want to give other families that are going through it? Or if people get slapped with that scary diagnosis next week? I think,

Jennifer James  18:10  
not to sound too cliche, but there were so many times where I just felt like, you know, I was going to try and predict but you just have to remain hopeful and just know that you don't know how things are going to end up and what direction things are gonna go. And then I've always told the Mama's and I'm sure this goes for the dads as well. But to trust yourself as a mom like there were a lot of times when I would push really hard for something or like I just would like know something wasn't right. And I had to really learn to trust that like I knew she would get fevers every time she was given vincristine, which is a type of chemo and we figured out that if she was given fluids, like I started to see this pattern that if she was given a bag of fluids beforehand, she wouldn't get nearly as sick. And I had to really pushed for that. But looking back on it it made it was so much better for her if we could just give her that bag of fluids. So you kind of I had to get past I had to get over being like that mom, right? And just be like, No, I'm this is what's best for her. And I'm her mom. I know like I'm the one who's with her day to day and there was a doctor who she I'm sure is a very brilliant woman. She was part of the stem cell transplant team. And Vivian started running a fever after chemo, which was very routine for her and she came in and told my husband she was going to do some different a chest X ray and a few other things to try and diagnose what was going on. And he said, Well, this is chemo, right? She runs a fever after chemo. And the doctor didn't know us at the time. And she was new just because of the stem cell transplant because it's a different team that does that. And so she didn't really want to be questioned. I don't think again, she's probably very bright but lacking in some social skills and made a comment that every once in a while there's a parent who thinks their child is really special and was that's more or less a direct quote to Like she said to my husband, and I walked in about that point to hear my husband say, Okay, have you looked at her chart? I understand that you know how this process works. But do you know my child? Have you taken a real interest in my child? So I think, you know, being willing to, you have to be their advocate, because the not that the doctors are going to intentionally they want what's best for them. But they also don't know them. I mean, she's our child. And so he, I was gonna say politely, but he asked, you know, that a different doctor be brought in that we have someone else working with us on the stem cell transplant. And I think you have to be willing to do those things just so that, you know, they know that you really are paying attention and that are engaged in the process. So that I guess I would give that piece of advice. Don't Don't be afraid to ask questions, and to be really involved.

Jennifer Van Syckle  20:46  
And did they? Were they accommodating? Did they get a different doctor? Oh, yeah.

Jennifer James  20:51  
And you know, it's a teaching hospital. So everyone was deer in the headlights when I walked in? Because they were like, Oh, my gosh, they just asked for a different doctor. But I mean, you are paying for it. And it's a service, I think we start to I don't know, health care has become an interesting thing, I think and how you have to manage it and be very involved.

Jennifer Van Syckle  21:11  
Absolutely. From even the mildest anything in your life, whether it's cancer or not totally not cancer, a broken toe, you know, yeah.

Jennifer James  21:18  
And I think we should be able to ask questions, and it's not that we're questioning their knowledge or their background, it's just genuinely asking questions, trying to understand, I think if there's any other advice I often have wished that we live near, because I would love to be there as a support to families who sit is such a shocking thing. You know, right out, right out the gates. But yeah, yeah, just hang in there, right. Just one day at a time. Again, I sound like a cliche,

Jennifer Van Syckle  21:45  
do as you look back and you think about your own, you know, whether it be the thoughts you were thinking, your feelings, your feeling, can you see a shift? You know, the very first time maybe being a deer in the headlights, kind of being reactive, not like doing what you're told to now you're telling us a story about this other end where you're like, No, this is chemo, we want a different doctor. I mean, can you tell us about like how you were feeling and what you were thinking and going through? Through,

Jennifer James  22:12  
it definitely changes you. Because I think that I was probably a much, I don't know, like, I think it definitely has helped me to be more confident, just to trust myself. And I can remember having conversations with her too, when they're, it's interesting the way we would communicate with her to how it's, we have a lot of hard conversations that our family that I don't know, that we would have naturally had. But even when I knew a doctor was coming in, and we were gonna have to have our conversation because labs got lost, or whatever had happened. And I would say, Okay, here's what's gonna happen, this isn't about you, I just have to ask some hard questions, so that she would be okay with that tension too. Because, you know, when you're already not feeling good, and then having to sit through confrontation like that think, I don't know, she's balancing a lot of different things. I used to worry too, when she was a little bit she was she was just a sweet, like, I was worried she was going to become too accommodating. And she definitely has her own voice as well. So I see that she kind of learned to also in a respectful way, ask questions to, yes,

Jennifer Van Syckle  23:14  
she's learned that advocacy and yeah, interesting, I think, you know, when she's accomplished your goals, and she's that pediatric oncologist, I bet you won't have the same issues with her with social skills that you will with, that you've had with others. And

Jennifer James  23:28  
the other fun thing is that they, you know, as a teaching hospital, you had to get used to the fact that six or eight people would walk in at once. It wasn't like just one doctor. And I'm, I wasn't used to that. So all of a sudden, but then they would always be talking right to her. So her like comfort level with adults and with like sophisticated conversations and really analytical been fun to see how she, and it catches people off guard, I think, because there's I don't know how else it's almost like she's had her own little mini medical degree through this whole process. So that's been kind of a funny thing to watch her grow into.

Jennifer Van Syckle  24:03  
That's a good way to put it. That's, that's a really good way to actually, she probably has, yeah, you can probably toss some big words at her and she'll know exactly what you're talking about. Yeah.

Jennifer James  24:12  
And she'll spring it on her teachers and her teachers will be like, Wait a minute. How do you know this? So

Jennifer Van Syckle  24:19  
we had we pulled some interesting data on neuroblastoma, or Wilms tumor. And so in the past 20 years, there's been 41 cases diagnosed in the state of Montana. All of those are in kiddos under the age of nine, and only six out of the 41 passed away from their cancer. So we average about two per year. Did you have you guys ever crossed paths with anybody else that's had the Wilms tumor in Montana?

Jennifer James  24:43  
I don't know we've traded notes. I've had a couple of families reach out to us. And actually there is a family from I'm from central Montana, originally in there as a family and their daughter was my age so I can remember her. The treatment was very different. So yeah, we have With a couple in we've traded notes with a couple, but use in the last 40 years, only 41 cases.

Jennifer Van Syckle  25:05  
In the last 20 years, there's been 41 cases, all under the age of nine. Yeah,

Jennifer James  25:09  
yeah. And it is typically Vivian was even on the high end at five. Typically they see it in like three and under, like, it's definitely a young child.

Jennifer Van Syckle  25:17  
It's the most common type of kidney cancer in children. Nine out of 10, it will be this type of cancer. And nine out of 10 are usually cured. The other

Jennifer James  25:27  
thing I think, when I was visiting with Vivian this morning, you know that those numbers tell you how rare it is in Montana. And so I that was another big reason for us to go to Seattle was to be with doctors who saw this a lot because they knew the treatment plan. They knew what to look for. Because I think you know, for maybe we didn't look at it for too long. But of course you go through that analysis in your head of should we just stay here and do treatment, should we go somewhere. And for me, that was the biggest reason to go was to be in a place where that's all they did. They weren't also trying to like her doctor treated neuroblastoma, I think two types of solid tumors and that's all he treats. And her nurse practitioners were the same way. So it wasn't like they were treating other types of childhood cancer. They weren't treating leukemia, they had other doctors for that much less trained to treat adult cancers. So for me, that was the biggest selling point to get to a place that really that was all they did was they really focused on what she was battling.

Jennifer Van Syckle  26:32  
That's a really good point. I brought my mind conjured up the jack of all trades, master of none, saying

Jennifer James  26:39  
not to downplay you know, any of our doctors in Montana, but it's pretty hard to know about all the different types of adult and pediatric you know, there's just so many different

Jennifer Van Syckle  26:47  
types, you know, you're to think about with some, maybe not necessarily this one, but the equipment that might be available. You know, the technology, the the medications, a stem cell transplant, I mean,

Jennifer James  26:59  
well and the pediatric ICU if you were to crash, I don't know you you could probably tell me is

Jennifer Van Syckle  27:04  
Billings. I know Kalispell has one up at Logan, Logan children, I believe. But exactly, you know, it takes us what four hours to get from Helena Kalispell, so you're already on the road. Anyway. So are three and a half hours. Um, I'm curious to like some of the signs and symptoms according to Google, when I looked up this, not talking about, you know, fever, abdominal pain, constipation, high blood pressure, swollen veins in the abdomen. When you look back, and you think about life with Vivian before the sledding incident, do you think can you think of any thing where you're like, ooh, that might have been the sign we saw or something that just blew off? Like, anything like that? Nothing?

Jennifer James  27:45  
No one? Yeah, there is nothing that would have told us if she hadn't had that accident. I don't know. Like, I think the few families I have talked to like they noticed like a distended abdomen. Like that's the only issue. I didn't see that then. Vivian. Always real petite trim like it she was thin enough that if it were we would have been able to see it. So you know, regardless of what you think about a higher power you do I don't know. For me, I definitely think the sledding accident happened for a reason.

Jennifer Van Syckle  28:17  
And you know, I spent a lot of years in healthcare and a lot, a lot of diagnosis has come that way where it's just uncanny. You go in for one thing, and they find something else you go in, because you broke a rib and they do an x ray, and they catch something a growth somewhere else or a CT. Yeah, it's, it's amazing, or the doc happens to run bloodwork on a kiddo and the blood work shows something is horribly wrong. It's not just the flu. Pretty interesting. Yeah.

Jennifer James  28:45  
So and our son likes to take credit because he was on the sled going down the hill when she dove on. So we let him think that he had some sort of, you know, hand and perfect purchase. He had to put up with a roller coaster this whole time. Oh, man. Yeah, they're saying that I think people it's not like, you know, we all went through it. And there were a lot of times I almost worried more about him than her because, you know, everything was so focused in like, all of the different therapists and the treatment and the school and everything was so focused on her that sometimes I was like, oh, but nobody ever asks how he is everybody how she is

Jennifer Van Syckle  29:23  
and how did he do? I mean, did did you feel like he acted out or anything like that to get attention or? And he did

Jennifer James  29:31  
pretty good. Um, I think maybe some of that's yet to be seen, to be honest with you. i The number of because I have been to some pretty fabulous therapists to help me get through all of it. And some of the advice they've given is that some of this bubbles up in their teenage years, you know, when you and I wonder if that's true with a lot of childhood trauma that you kind of start to process it more in your teenage years. I'm I don't know that for sure. But I think you know, we Have tried really hard to let him have his own interests and let him you know, be his own person. And as much as we've tried not to make this her story, we've certainly tried not to make it his as well. And also, I think my husband always would say to we're not going to let this be an excuse, right? We're not going to excuse behavior, excuse certain things. So I don't know, that's a long winded way to say, he's seems to be great. But I guess there's a part of me with both of them that still kind of thinks, you know, they'll just it'll be something I think there'll be processing and trying to stand for probably most of their life. And you know, they

Jennifer Van Syckle  30:36  
talk about the ACES the adverse childhood experience, and oh, man. Yeah, unfortunately, those boxes were probably definitely checked. Big time. But yeah, and you just never know. You know, I know I've heard about they call them the orchid versus the dandelion, how? Yes, um, some people are extremely resilient, they're dandelions, they grow and they thrive, no matter how many aces you throw at them. And then you have your orchids that that don't you know, and you just, we're all our own individuals. And yeah, let's, yeah, that's interesting.

Jennifer James  31:09  
Yeah, I'm sure it will influence. I mean, it's certainly influenced the choices she's making. And I'm sure on some level, it will his as well, right. It just affects what life looks like. But the other neat thing that it was through the Fred Hutch, which people who've been out to Seattle for health care, it's another like cancer, treatment or organization. But they offered a summer camp for siblings. And so he was one of the youngest ones there. But it was super fun. And he would go, I think it was pretty much all day. And we met this other family who had moved to Seattle from Hawaii. And it was an older sister, their their you littlest brother was the one in treatment. But there were a couple other brothers in the mix. So she kind of just at the time, I think she was maybe, I don't know, fourth or fifth grade, but she kind of just took our little guy under her wing with her other brothers. And we became really good friends with that family. And so, you know, the resources for families was just so it was that was just incredible how many things are in place? And I think probably Denver children's, like probably most children's hospitals have those things. So that was pretty great that he was able to go be part of something like that and be around other kids that, you know, their siblings, were going through the same thing.

Jennifer Van Syckle  32:27  
Oh, that's amazing. That is very cool. Mom and Dad are probably like, Can we get a parents camp, please to oh,

Jennifer James  32:33  
well, that's just it to be able to be around people. Well, even though the families we met, like that's been great, because they nobody else can really understand until you've been through it. So. And maybe that's been when you asked if I have changed. That's probably the biggest way I've changed is that realizing that there's only so much I can control. And that just really, it's just to really be content and grateful for today and what we have today, it's been not that I would wish this on anyone else. But that's been a huge gift to be able to live like that versus always thinking that if I buy this or if we go do this, or if we accomplish this, like all of that has gone away for us that that none of that is important. Yeah, that's been a gift. Yeah, definitely.

Jennifer Van Syckle  33:21  
You guys have an awesome, awesome perspective. For sure.

Jennifer James  33:23  
I tried on anger for a while. I've told people this before, you know, you can decide to really be mad about it. And that didn't feel great. Right? That didn't work well. So I think we've just tried to find the silver lining. And I think for her to be able to watch her in the way she will be able to help other kids is just so amazing. And I can't wait to watch that happen, because I just know she'll be so amazing at it.

Jennifer Van Syckle  33:47  
Thank you so much to Jennifer and also to her daughter Vivian, for sharing their story with us. If you would like more information on childhood cancer or anything else you heard in today's podcast, visit our website at talking health and the 406 dot mt.gov. And if you haven't already, please go ahead and click on that subscribe button. Wherever you listen to podcasts. We would greatly appreciate it. And until next time, take care

Transcribed by https://otter.ai