Jennifer Van Syckle  0:00  
No one expects a diagnosis of cancer to pop up in their lives. But when it happens in your child, it can be absolutely shocking. Today's guest is Jennifer James, who's going to share her story of having your five year old daughter diagnosed with childhood cancer. 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

can you take us back so you have How old is your daughter now?

Jennifer James  0:38  
She just turned 15. So it's been 10 years.

Jennifer Van Syckle  0:41  
So tell us about 10 years ago Was she a great healthy young, five year old girl?

Jennifer James  0:47  
Yeah, she had just turned five we'd had a really fun birthday for her. And we had she and her brother out front I was with them. They were all bundled up in their snow gear. And we have a little hill in the front yard. And she dove on the sled and hurt herself and needed to lay flat on her back. And I at the point, you know, small children, a three year old in the fight almost three, he wasn't quite three. I was just frustrated, like, Okay, we'll just go lay inside, right, I'll come check on you in a minute. And so she came inside. And then for two days, she just wanted to be flat on her back. And so we took her in thinking what in the world, not a big hill in our front yard.

Jennifer Van Syckle  1:22  
Her back was hurting your was it her side. But

Jennifer James  1:25  
she wanted whatever reason she wanted to be flat on her back. And so we took her in to the emergency room after you know, looking back now probably shouldn't have waited two days, but it just didn't seem to be the type of accident that would have created any sort of major injury and she was diagnosed with a lacerated kidney. So went then for another close to two months, six weeks to two months kind of monitoring and it didn't heal. And at that point her pediatrician who we love and adore sent the scans over to a doctor in Spokane. And that was the first time we'd heard Wilms tumor. And initially they hit us an ultrasound and I think they saw a mass and then I think they just thought it would heal you know that if we if she took it easy what she did you know and just rested and you know, didn't do any major physical activity that it would heal on its own. And then when the imaging came back again, that you know, there still was this mass is I think what it was being, you know what it looked like to them, that that's when we first heard the term Wilms tumor. So

Jennifer Van Syckle  2:25  
wow, you locally at the Helena hospital, okay, we need to send you elsewhere for this or to you guys to go elsewhere and get a second lens. Our

Jennifer James  2:35  
pediatrician who initially found that out she sent the picture to someone in Spokane to a hospital to a I think it was a urologist, a pediatric urologist who she sent the scan to. And that was the first time you know, the first person who had actually said that it wasn't actually diagnosed here in Helena. But then, so we were planning kind of to go just to Spokane, just to see that doctor. And then, you know, we talked to enough friends who are in the medical community, and it just seemed like it was probably worth it to keep driving and get to Seattle Children's. So the next morning, we heard about it in the afternoon on a Monday. And of course, you know, everyone's heard the stories next Monday, I hopped in the car with her and my mom decided to ride along and we drove to Seattle, and my husband stayed here with our little guy.

Jennifer Van Syckle  3:19  
And were you able to get an appointment out in Seattle that fast? Or did you guys

Jennifer James  3:22  
know our pediatrician, she's amazing. She called and she even switched it. from Spokane to Seattle, within a matter of hours. Once I kind of had made my mind up that we were gonna keep driving to Seattle. She was able to get us in and yeah, I can remember, you know, clears day just the writing from the little hotel we've always stayed in now it was the first time we'd ever stayed there writing the hotel shuttle up to Seattle Children's and going in and having this itty bitty little girl and you know, it was all so foreign. Like I don't have a background. We've never had anyone in our family with cancer. I don't have a background in medicine. So it was a whole new ballgame for us. So

Jennifer Van Syckle  3:57  
you saw the word Wilms tumor come at you the first time you heard it. Were you had you ever heard that term before? Oh, no, no. So did you hit Google? Or did your pediatrician or somebody say this is a type of cancer? Here's what we're gonna do, or was it?

Jennifer James  4:11  
Well, she said over the phone, you know that we you know the term Wilms tumor and so of course, I googled and it's 95% curable. And I think our pediatrician maybe had told me that on the phone, but still you don't know. And of course, you know, there's been so many twists and turns even since that diagnosis, so yeah, it was definitely I don't know, maybe a blessing in disguise to have been so naive. I don't I'm not sure if like I'm not looking back on it had I known it probably would have been harder. Had I known what walking into

Jennifer Van Syckle  4:41  
Wow. And so when you got out to Seattle Children's did they admit her and take her and redo all the scans and all the tests and everything or when you got out there was a just a a meeting in a doctor's office with one of their providers. What did it look like when you first got the

Jennifer James  4:58  
scans and bloodwork They had to, because she was so little, I believe they had Yeah, I think they put her to sleep, so that they could get her to lay real still and did the CT and got the imaging and then the bloodwork and I can remember the three of us sitting then in with one of the providers and them automatically going in to start analyzing all the bloodwork, like showing me her, like blood cells like looking at all of the numbers. And it didn't even occur to me like it maybe it had come out of the doctor's mouth that she had cancer, and I didn't hear it or maybe the doctor just went into like her normal sort of, because once we got into the routine, that's what you would do you sit down, you go through the bloodwork, you look to see okay, where are we at where her platelets? So it kind of started out that way. And I had to be like, hold on a minute, like, what are we doing? Like what what is like happening here? So whether it was me not hearing it, or? I don't know, it's very surreal to think back on it almost really ask and say, Whoa, so you know,

Jennifer Van Syckle  5:59  
inertia. I mean, you see it a lot in the medical field that nurses have realized thinking patients and people know more than they do here. We're on this freight train. And now we're moving forward. And everybody's saying What do you mean?

Jennifer James  6:10  
Yeah. Well, and she probably, to her defense, the oncologist you know, it's probably what she doesn't every appointment right. But I needed like that. I needed that conversation of Okay. Vivian has cancer, you know, I needed it to be that blunt. So, and to have a minute for it to sink in. So yeah, I think it took a while for all of us for it to sink in. But she then tried to think how many days I think that happened. And then maybe just a couple of days later, she went straight into surgery. So they didn't admit her right away. You know, we went back to the hotel, and it may have even been the next day, but surgery happened pretty quickly.

Jennifer Van Syckle  6:48  
Wow. And so what did that surgery look like? Did they take out her whole entire kidney? Or was it just just that tumor? Just that mass itself? This is where

Jennifer James  6:57  
you know, the twists and turns start Oh, okay. Now, anyone who's been through cancer treatment, it's just never goes the way you know, you. And in my brain, too. I like to run scenarios. So I would run all the different scenarios. And then inevitably, it would always be different than whatever scenarios I had run. But so they started the surgery. And her surgeon who was the head of surgery at Seattle Children's got in and they did a biopsy. And the plan was actually to pull the entire tumor but and the kidney. But there's, they thought they saw a spot on her other kidney, which then puts you in the bilateral category with puts in it puts you in a whole different treatment plan, because they want to preserve as much kidney function as possible. So they essentially put her port in, and then sewed her backup. And so what is a port? What what is that? Oh, so a port. Yeah, I wouldn't have known that either. Prior to all of this, it's a line that they give you that goes directly to your heart. And then it makes it much easier to administer chemo or anytime you need an IV, they just access your port then. And so then you don't have to, which was a just a blessing lifesaver for us, because she was so little and her veins were so little, anytime they went to give her an IV, it just was not fun for anybody involved in and then before any procedure, they asked you not to drink any water or eat any food. So then you know, she'd be dehydrated on top of being so little. So the port then just allows them access to her. It's a direct line to your heart. But it gets you into the bloodstream. So it's how they would then draw her blood to do tests or administer chemo or, you know, whatever they needed to do. So they put the port in so that she would be ready for everything and then sewed her back up and gave us the news that she had fallen into this bilateral category in that they wanted to do chemo first to shrink the tumor, and then save both as much of both kidneys as they could, in case you were to relapse down the road. Because you know, you don't want to with children this small if you cure the cancer, and then you automatically put them into a high risk kidney situation where you're then on dialysis and needing a transplant. That's not good either. So they're trying to be conservative and balance all the different issues.

Jennifer Van Syckle  9:02  
Said you even considered the bilateral category when you were going through the scenarios. No,

Jennifer James  9:07  
I didn't even know that that existed. Yeah. And then when the pathology came back, not only so then the spot on her other kidney wasn't even large enough to biopsy. So you know whether or not she was that still looking back on it hard to say but you know, you have to appreciate you can't question looking back and but she also was then determined blastemal which is like this weird, so that I think the other term is anaplastic. But it's like not just your plain old Wilmes It's like another variation then of Wilms. And I think probably all cancers have that where there's like these weird mutations and so so all of a sudden, we've now found ourselves not in the 95% curable category because it's become more complicated.

Jennifer Van Syckle  9:50  
Did they give you a percent at that time? Or any numbers?

Jennifer James  9:54  
Probably I don't. And I think you know, long ago I stopped even Listening to the numbers because just knowing my brain, it wasn't really helpful to spend much time on those numbers. That makes

Jennifer Van Syckle  10:07  
sense. So she started chemo. I take it then. Right? It's a pill or liquid that they put through the port. What did what did the chemo look like? And how did she react to it? Tell us

Jennifer James  10:19  
it's an infusion through the port. Yeah. And it was the first bit we did it was all outpatient. I'm trying to remember Yeah, it was all outpatient. The tricky part though, for us was so after you, they hand you this big paper bag full of medication to help manage the pain and the nausea. And you know, it's so Zofran, and then there's like this Benadryl reglan mix you can use and then there's Ativan. And so then they explain to you like how you can use all of these different than how you like stagger them. And when you use what and you know, you're already kind of like in shock over the whole situation. And then you're handed this big bag. And it took us a few, I would say months, unfortunately, to kind of figure out what worked for her body, and how to really manage the side effects, because that was pretty brutal. And so we would kind of think, too, they did the chemo, and she responded well to the chemo. And we did I think, like three months of that, and then radiation as well. And that was rough, because they started the radiation right on. So already, you know, you've had a surgery, you had all this chemo, and then went into radiation. And I don't, you know, they can't what they can do to a child's body is different than what they can do to an adult body. Because they if they had done that, to us, our bodies don't recover as adults as quickly. Where's that you can hit a child's body pretty hard with cancer treatment just because of how quickly they and I don't even like to use the word resilient because I think that's, I don't know, it's just that their bodies are different. So did the radiation, which was really rough, and then a surgery?

Jennifer Van Syckle  11:53  
Why was the radiation rough? Does it? Did it burn her skin? Or was it did it make her sick as well? What did that look like? For for like the radiation for I guess, the radiation and then yeah,

Jennifer James  12:04  
it made her really sick.

Jennifer Van Syckle  12:06  
Interesting.

Jennifer James  12:07  
She was I think she was already really worn down from all the chemo. And then the, you know, you do radiation concert, I think she did it every day for two weeks. And the the part for me too, is that it was really unpredictable. Whereas with the chemo, we had kind of figured out that like, on day seven, if we gave her this medicine, this would help. And then by day, 10, we could do this. And then by day 12, she'd feel better, like we had figured that out. And then the radiation just was really like she have the whole and then go like four days and then get sick. Like for me, I couldn't predict when she was going to feel miserable. And so then it was hard because you couldn't help her because I couldn't like get ahead of it. And I think for me as the mama, that was a really hard part of it, because you wanted to be able to make it better. And I just couldn't it was so the radiation was just so unpredictable compared to the chemo. And at least for us. I don't know if that's true for everyone. But this

Jennifer Van Syckle  12:58  
whole time you guys went out there, you're staying at the same little hotel you haven't been home yet. Did you come home at all during all this? Or is this all in one,

Jennifer James  13:06  
she and I had not at home. But we had a friends who let us borrow first of all their home in Snoqualmie, which was a huge gift. They had one that was kind of in between renters or something. And so but that's a little ways outside. We were there for probably six weeks, maybe two months, April. Yeah, something like that. And but then when she, we got to this point where she needed to be closer to the hospital, they asked because of the ICU, they want you within a certain distance of a pediatric ICU when your child's going through treatment and case they were to crash. And so we were like really right on the edge. But it was great for the first few weeks just because it was kind of a home and more of a residential setting. But then we had some friends about a condo really close to the hospital and they let us borrow that condo. And we moved there for the duration then when she was going through radiation and things were really rough, because then we were closer because anytime they run a fever, you have to go to the emergency room because they want to monitor them really closely just because their immune systems are so fragile during treatment. So

Jennifer Van Syckle  14:09  
Wow. And so you've been doing chemo and then radiation for weeks. Did they rescan at that point in time and were you able to tell you know what's going on

Jennifer James  14:21  
every once in a while they would and you know I would have gotten trying to remember where the surgery fell with the radiation. I think she did surgery and then went into radiation and they use the radiation to kind of mop up anything else that was there okay tumor removed and then did the radiation and that's the surgery was rough. Just because it's such a big surgery you know, cutting just through all the muscle the entire abdomen we joke now because it's easy to joke now this far out, but that she should have just had a zipper put in because of all the different you know, times they've gone in and out to work on her kidneys. But and so at that point they removed I don't even think it was A quarter of her kidney and the entire tumor. So, and then the radiation and then we have to go home. And I think she and I were there for eight months after that. Wow. Yeah.

Jennifer Van Syckle  15:12  
Oh my goodness. And if I can ask, did she have kind of what? You know, maybe the rest of the world layman think of with the chemo, like loss of hair? Oh, yeah. A complete loss of appetite. And how is she handling this as a five year old? Was she? You know, like you said kids are, they are resilient. But I mean, what was what was her emotions? And how is she doing with all of this?

Jennifer James  15:33  
You know, she was amazing. And she did lose her hair. She had to be on a feeding tube. And of course, I in my head, I think it was my coping mechanism that will she won't lose her hair. Like, you know, the chemo won't be that strong. Because with the typical wimps Wilms tumor, there are cases where you can go on like a real light dose of chemo. And it's enough and, but that wasn't what she was on. And so she lost her hair. And then she wasn't, I wouldn't say a great eater to begin with anyway, and then she just felt crummy the whole time. And I would try so hard to make her eat. And so the feeding tube was actually as much as I dreaded it, it was actually really helpful, because then we didn't have to fight that battle. You know, it just kept her tummy full. And so that got her through and then taking her to school this morning, I asked her what she wanted me to convey and like what she thought was important. So we kind of talked through it a little bit. And we talked about this decision to go to Seattle. And I think one of the biggest things that was so helpful to her was they had a school, so she actually got to start kindergarten at the school at Seattle Children's. And they have music therapists and art therapists. And they have an entire department of the hospital called Child Life, which is people who are trained to talk to the kids about their diagnosis, and also about the procedures and Miss Alesia was the name of the woman who was childlife for oncology, and she was fabulous. Like she'd bring a stuffed animal, it was an octopus that showed like how all the different lines were going to work for Viv, like her port. And so they had tools like that, that they would help the kids understand. And she still loves going back. Like I think they have said that some kids, you know, get to the front door of the hospital and throw up immediately because they're so traumatized. And that was not the experience that Vivian had. She just is very fond of she loves being there. And she loves all the people there. And so if for no other reason, being in a pediatric facility, like that was worth it to us, just because of how well they how she grew both physically and mentally. Because that's the other thing with the feeding tube and then not eating, you know, your develop, their little bodies are still developing, and they have to still grow even though they're in treatment, which is again, super tricky.

Jennifer Van Syckle  17:45  
Did she grow? I mean, do you see the repercussions of that now? I mean, is she shorter in stature or anything like that or

Jennifer James  17:53  
eat? They radiate your entire abdomen because they don't want your spine to get curved. Because if they were to just really ones, even though her cancer was only on one side, they didn't want her spine to grow wonky, so then you don't grow in that section of your spine where you've been irradiated. So she's probably I don't know, a little more petite than she would have been. But I don't think significantly and she grew through treatment. The other thing that's really fascinating too, is they have been she's has an endocrinologist in the X ray. Her hand, she probably has another year, but she's growing a little later than other girls her age, just because it kind of just delayed development. Those years she was in treatment. Okay,

Jennifer Van Syckle  18:35  
interesting. Yeah, yeah. And when you stop and think about how different we all are with growth anyway, you have the kiddos in high school that don't shoot up till they're 17 and others are fully grown by the time they're 13. Yeah. And hard to know. Yeah, definitely. Oh, wow. So when you left when you finally left Seattle, and came back home to Montana? Was she given the cancer free diagnosis? Or did you know you were just going home for a couple weeks and coming right back and continuing the battle? Or where were you at at that stage after she'd been having chemo and radiation for that long and had had the surgery

Jennifer James  19:11  
came home with the hope that she was good, and went for her checkups every three months where they would do an ultrasound and a chest X ray. Because if Wilms is going to migrate, there's a better word for that. But I'm not going to come up with it,

it would go to your metastisized yet, okay.

The lungs is where That's where it likes to go. So for two years, we were actually so they have you do that every three months for two years. And we were to her appointment where we would have been able to go to six months, when we found out that she had relapsed, that the cancer had come back

Jennifer Van Syckle  19:43  
was in the same kidney or tell us about that

Jennifer James  19:45  
exact same location. So we went into a bunch of conversations around what next and we decided to go the route of a stem cell transplant so she and I moved back to Seattle and then rent an apartment very close to the hospital because we knew that this treatment was going to be a lot of impatient. The stem cell transplant, you end up it's not as long as a bone marrow transplant, but because they they use your own stem cells and they give them back to you. It's kind of a recovery method with a solid tumor versus if you've got leukemia, which is a blood tumor, and then you get a donation from someone else. And that's a bone marrow transplant. So it's a kind of a variation on that.

Jennifer Van Syckle  20:29  
Can you tell us more about that stem cells since transplant? So where where did they get it from from Vivian? Was it just blood was it bone marrow or tell us about that?

Jennifer James  20:37  
They use the My husband was there for the procedure, but they use the artery in your leg. And so they give you a line in that's how they and then they have this machine that spins I guess really fast according the way they described it to me and it pulls the stem cells out of your blood somehow. And so then they freeze those and save them. And then they put you through this really extensive chemo, where they essentially they give you like the strongest amount of chemo your body can handle to kill all your, you know, any fast growing cells. So it can cause hearing loss, because you have hair right in your eardrums. And if you lose all this hair, it's really hard on your mouth, because you have a lot of fast growing cells in your mouth. So like mouth sores, it's pretty brutal. And so if that's the same as what they do for a bone marrow transplant as well, so they give you like, and then they essentially rescue you is how they put it with they give you back in Vivian's case, gave her back her own stem cells to rescue her body. And then you wait for you know that to kick in. And to bring her body back in my husband always we kind of had this deal where he would do the inpatient and I would always do all the outpatient stuff. So can Vivian set up camp and I think they were there for 37 days on the oncology floor for the whole process. Wow.

Jennifer Van Syckle  21:58  
Did he stay in the room with her? Did he get his own hotel and go get oh, no,

Jennifer James  22:01  
he stayed with her? Did? Okay. Wow, we have the room set up there for the like the there's a bed for the parent and then a refrigerator and left full bathroom and the oncology floor is kind of like the fancy because people are staying there so much longer versus like the surgical floor like they have the oncology floor setup for families to be there.

Jennifer Van Syckle  22:21  
Okay. And when they pulled those cells out today genetically alter them or anything, the stem cells, do you have any idea what they do to those?

Jennifer James  22:28  
No, they didn't do anything to hurt. But I know there is with leukemia treatment, there is where they're taking the blood and reprogramming it and actually, is it through the Fred Hutch or maybe through Seattle Children's directly, they really have developed for treating leukemia that's been really successful. And so now they're starting to do it with solid tumors. But that's kind of more like the one doctor was explaining to me that's more like peeling an onion. Whereas if you have a blood cancer, it's easier to teach your blood to go attack each of the little cancer cells because they're floating, right? They're all like in leukemia or blood cancer. They're all kind of it's not solid, whereas with the solid tumor, they have to teach it then to peel the onion and kill each layer. So it's a different programming. I'm oversimplifying that but there I think they are now, there are some trials being done at Seattle Children's and there's Dr. Dome is the protocol setting doctor for Vivian's type of cancer in wash. He's Washington, DC, DC children's. And he has some also some trials he's running as well using some of that.

Jennifer Van Syckle  23:28  
Wow, thank goodness for modern medicine. Amazing. Join us again in our next episode, where Jennifer continues to share her story of her daughter's journey through childhood cancer. For more information on what you heard today, visit our website at Talkinghealthinthe406.mt.gov. And please be sure and subscribe to our podcast wherever you download your podcasts from. Until next time, take care

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