Whether you’re recovering from cancer or dealing with a chronic illness, how you nourish yourself is so important – and that includes not just the food you’re eating, but also your mindset and thoughts. In this episode, how do you use the experience of a devastating diagnosis like cancer to live your healthiest, most nourished life.
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On today’s show, we have Janet Jumper, nurse practitioner back in the Gutbliss studio. But this time, Janet is not here as a practitioner or as a patient with Crohn’s disease. She is here as a parent to talk about something deeply personal and challenging. Janet, welcome back. It’s always so great to have you, although I know this is maybe a difficult conversation we’re about to have.
Thanks for having me. I’m always glad to be here.
Well, first of all, I want to thank Claire, your daughter, for giving us permission to talk about her medical history. It was really gracious of her. And so, Claire, thank you again for allowing your mom to share what you have gone through personally and what the family’s gone through. Janet, why don’t you just start from the beginning.
Yeah, so today we’re talking about the cancer journey of my daughter who was diagnosed at the age of six months with neuroblastoma and underwent treatment from six months to 22 months. She is now 12 and she did survive so that’s always a good thing to put forward first when we’re talking about these issues and also to be mindful and remind of the children that we knew along the journey that were lost during that time. That not every parent is as lucky and as fortunate as we were. And I do believe that it is luck and fortune and not anything that anyone ever did that makes that journey what it is. So I just do wanna put that out there first.
Janet, can you define neuroblastoma for folks who may be a little less familiar?
Yes, so neuroblastoma is actually a peripheral nerve cancer, so it can generate anywhere in the body. Most people think that it’s on the brain, but the most prolific place that it generates is on the adrenal glands that sit on top of the kidneys. That’s the most common place for the tumor to occur, and that’s where Claire’s was. It can also be in the thoracic cavity, along the spine, in the lungs. There are lots of different places that these tumors can be, but it is not a brain-generated tumor where it is in the brain. So I think that’s one thing that when people hear neuro, that’s the first thing they think. But she had an adrenal gland tumor.
And how did they find it? I mean, she was a baby, so it’s not like she was able to complain and articulate what was going on. How did they diagnose it?
Right. And this is kind of a cautionary tale to parents because I don’t want parents to run out and be worried that their child is going to have this or they should be doing extra testing. But she actually had an ear pit, which is just a little cyst on your ear that lots of people can get. And her pediatrician, out of an abundance of caution, because your ears and your kidneys can be formed at the same time, or are formed at the same time in utero, you can have some kidney abnormalities if you have an ear pit. So she was worried about kidney development. We got the renal ultrasound at around four months old. And the results of that showed that she had a tumor on her adrenal gland, which sits right on top of the kidney. And that started off the cascade of diagnostics and testing. So really important to know too, is that, you know, these type of tumors differentiate. And so meaning they can go multiple different ways and there’s a risk category for each tumor. So depending on your risk, what I didn’t know is that it’s possible that in babies or infants, small tumors or small irregular growths can be developing and your body can actually take care of them and get rid of them. So it wasn’t until we were through part of the process of Claire’s diagnosis that we actually learned that her risk stratification was intermediate, and then therefore she needed a biopsy and she needed further treatment.
One of the things I’m really interested in is how we can help people who are struggling. And of course, because this is the Gutbliss Podcast, primarily people who are struggling with GI issues – but really anybody who’s out there struggling with their health – get through something like this. And I honestly, as a parent, cannot imagine anything more stressful. This is worse than it happening to you for sure. It’s happening to your baby. But how can we take this and in some way use it to enhance our health, to live better, happier, healthier, stronger? Of course, the fact that Claire survived can go a long way towards that. But beyond that, I mean, if you sort of think about when you were in the thick of it, and then after, how has that experience changed you as a parent, as a patient with a chronic autoimmune disease, how has it changed you and Claire and the family? And, you know, tell us how you use that experience to come out of this stronger.
There are so many things about the experience that are important. And the first two for mindset, I think this really helped for me, was clarifying that it was Claire’s journey and not my own. I was her cancer sherpa, if you will, and of course she could not do anything for herself. She was an infant. But I think that really made it more real for her. And that’s sort of been her whole life. I mean, she has to live with the consequences and the sequela of four very toxic chemotherapy agents that she sustained. And while she did sustain small amounts of those, two of them, the doxorubicin and the cyclophosphamide can have long-term cardiac effects. So there are things that we do worry about. But I think for me, it was really important for me as a mindset, so we talk about mindset a lot, to say, “this is Claire’s journey”. I didn’t want to say “we have cancer” or “we are doing this”, because it just was really important for her to know that this is her journey and I’m supporting her through it. And we continue to talk about that as a family sort of as we go along. And I think that also took some of the superhero effect away from me. I really feel like people do sort of revere their mom and revere the parent who’s there. That was wonderful, and I felt so supported. I had prayer shawls, and I had people bringing me food. The amount of love that we sustained during that time was remarkable. But also, too, I think, especially in the age of social media and all that, just to put forward that you really have to be in it and you have to be watching it and you have to be present, but you have to not take it and incorporate it into your own soul and your own journey in order to be the right support for your child. So I want to start out by saying that that’s really important for me to say. And for anyone who has a child with a chronic illness, I would love to explore that more so we can talk about that on Instagram or on another podcast, but I just wanna talk about that for sure.
Part of that, maintaining the separate identity, which for all the reasons you delineated is so important, but also for the reason of blame, which I’m sure is the first place you go to, right? What did I do when I was pregnant, during the birth, after, what did I do or not do, why this happened? And this is something I see in my patients with chronic autoimmune diseases like Crohn’s and ulcerative colitis with their parents, for themselves also, what did I do to cause this? So how did you manage that mentally, emotionally?
And look, I can beat myself up forever. You know me, Robynne, I’m a striver and I wanna do everything perfectly the first time. And I had to release some of that. This was my first experience where really having to release and just give it up and say I’m not in control. But Claire was a C-section delivery because she was breached. Why didn’t I let them keep me in the hospital longer and try to turn her again? I have breastfeeding and lactation regrets because I was a very poor producer. I was in a hugely stressful relationship at the time. I took Domperidone, which is a very controversial medication to try to create more breast milk production. I mean, we could do a post-mortem on that for days. But really, I share all these things not to promote any of these things or not promote any of these things, but for people to know that when you are struggling and when you are blaming, you are doing all of these things. And I did all of these things. And it was heart-wrenching, and it was difficult for people to watch me go through. And so just to give credence and time to that process. And then survivor guilt is, you know, the other thing that was so hard is watching children who were sicker, parents who are struggling more. You just always sort of don’t know how to feel. You feel happy but you feel guilty. You know, there’s so much there. And so moving forward with those feelings, how do you harness those into the right kind of energy for your kid? And I don’t have an answer for that. I certainly did crazy things during the time that she was undergoing treatment as a healthcare provider. God bless the nurses at Children’s Hospital because I remember one of the things that I was so focused on was her port access and were they doing it properly and was it totally sterile and I wanted to do it. I mean, so again, like there are things that you do that are just beyond your control and beyond your brain’s level of thinking. And so to give yourself grace in those moments is really important.
While you’re mentioning the nurses, I just want to say my daughter Sydney was in the NICU and same thing, you know she was having projectile vomiting and other things and we were losing our shit literally. As a physician I was under this impression that like oh the doctor is running the show, the doctor is in charge. This is not the case when you were having a kid or in pediatrics or quite frankly in adult medicine, too. The nurses are really the ones who are really, I mean, you’re seeing the doctor for a few minutes a day. The nurse is the person who is there and who is really tending to you. And I think there is a lot of psychiatry involved, particularly with NICU nurses, PEDs, you know, all of these where you’re dealing with the parents, the sick child is not the problem. Usually it is the parents, and the parents are falling apart, or they’re obsessing about whether the port is clean or anything else. So I just want to give a shout out and thank you to all those nurses out there who are taking care of not just the children, but also the parents, as it sounds like they did for you.
It’s so true. And one of the things that’s informed my, you know, we’ve talked about this, but I have kind of a side business in healthcare conversation and having difficult healthcare conversations and validating people in their moment. It’s really about eliciting values and goals. It’s really about making people feel heard. And so in those moments, the people that did that for me, even young nurses, nurses that had, you know, I had 20 years of experience and they had two. But in those moments, the humanness and the compassion and the togetherness and the bonding are so important and the laying the hands on people and the comfort and all of those things were there. So if anyone feels like humanity is going crazy right now, just know that there are people out there who are doing that. There are people that did that for me. And what you say in these moments is so important. You know, one of the things that I think was so fascinating, two things. One thing that people said all the time was, you know, kids are so resilient, they’re going to get over this. And I, I balk against that. I resist that because kids are physically resilient. Their body will get over the trauma, but the book, “The Body Keeps the Score”, I don’t know if you’ve read that book, but it’s an excellent book; your brain does not. And so Claire has had a huge journey with a lot of emotional problems related to seeing people in masks. The last thing that she ever saw before a procedure, I would hold her, I would sing to her, was the mask going over her face. So COVID was a devastating time for us. She actually couldn’t leave the house for a long period of time and things that I wasn’t expecting. And for me, who is a rub some dirt in it kind of person, you know, that was really hard for me. You know, she had cancer, we’re moving on from this, we’re done, you know. We have not been done. And so there’s a lot that we’re moving through. The other thing that Claire’s father’s grandmother, who I loved and treasured, said to me during the time of her treatment is she said: Claire is never going to remember this and you’re never gonna forget it.
Truer words were never said. That is so true.
Yeah. So yeah, so while Claire, like kind of antithetical to what I just said, well, Claire does have some memory of some things. You know, the parents are the ones who are moving through the guilt, the blame, the shame, the worry, the concern. And so, again, just giving some space to those feelings is important.
And when we come back, this is the point I really want to dive into. I want to talk about how, particularly for you as a health care professional, and Claire now being a young adolescent, how you balance: “oh my goodness, you can’t eat that, that’s terrible for you, it’s got emulsifier in it, you’re gonna die”. I mean, it’s hard enough for parents I think who have kids who are healthy and haven’t undergone this kind of health challenge. So how do you balance, and especially again, knowing what you know, you’ve been a nurse practitioner, you have a background in family health foundational nutrition, how do you balance that in your parenting so you’re not being one of “those” parents, when we come back.
We are back with Janet Jumper, nurse practitioner, Crohn’s patient, and mother of a cancer survivor. That’s a label nobody wants to have. But as you pointed out at the top of the episode, Claire is thriving. She’s 12. She’s doing great. This happened when she was an infant. So there is definitely a silver lining there. One of the things I want to dive into, Janet, is this idea of balance. You are a healthcare practitioner, you yourself have a chronic autoimmune disease, you have a child who had cancer. I mean, there’s two directions to go with that. Right? Either you’re sort of the obsessive, oh my goodness, it has bad stuff in it, don’t eat it. Or you’re just sort of like, yeah, do whatever. How do you find that middle ground and what is that middle ground for you?
Yeah, and we talked about this in a different episode about the development of a lifestyle over time. So, I did not find out Claire’s cancer diagnosis and immediately start buying all organic foods and churning my own butter. This was not…I mean, this was an awareness that I developed. So there was Claire’s journey and then partway through Claire’s cancer journey, I actually was pregnant with another child that I carried into the second trimester and that child passed away. So then I had another pregnancy when Claire was two that was Chelsea, who is my second living child. And so during that time, all of that was sort of forming in my mind, like, what is going to be important about this experience that’s going to relate to her nutrition? And part of it that I really still am frustrated with is no one really talks about microbiome disruption and the setting of toxic chemical exposure, i.e. chemotherapy. Now, it’s something that you need. I’m not saying chemotherapy is bad, but I’m saying it is toxins. You are putting toxins in your body, and then your body has to recover from that. The toxins are necessary to attack the cancer.
Absolutely. And that’s something that we see not just for pediatric cancers, but for colon cancer, for all kinds of different cancers, as you said, we have to, what we’re trying to do is we’re trying to kill these cancer cells, which is going to damage a lot of normal cells, bring you sort of as close to the precipice as we can, and then hope that you survive and reconstitute. But there’s not a lot of focus. There’s not really any focus in the sort of conventional oncology world of how do we make sure that your microbiome recovers? Because we know that the microbiome takes a hit. These chemo agents are like, you know, they’re the equivalent of triple duty antibiotics on the microbiome. Some of them also are harmful to the gut lining. And so beyond the sort of, well, try and be healthy, there are some particular things, kind of like what we would recommend if somebody were on a long course of antibiotics, right? And if you’re interested in that, definitely check out a couple episodes ago: “10 Things to Do After You’ve Taken an Antibiotic”. The difference with chemo and for this sort of prolonged assault, which is what it is, right? It’s a necessary assault, is more than just drink a mushroom tea and things like that. There’s really, there really needs to be a focus on getting in the healthiest food, breathing the best air, all of those things. So how did you get to that? And how did you sort of keep that in balance?
Yeah, so sustained over time you know, so adding one thing at a time. So again, like what we talked about earlier. One thing that I can identify and point to is salad dressing like we were eating a lot of salads We’re eating a lot of vegetables. So that’s one thing I can do. Hey, I can put a half a cup of olive oil, some Dijon mustard, salt and pepper, and a shaker and mix it. And that’s our only offering. I don’t have 42 salad dressings for my kids. We have a honey one, we have a balsamic one, and we go. So those minor things, but really, when I was back in the beginning, when I had an infant and a toddler, and I was trying to figure out what the foods were. And that was a journey because at the time I was exploring gluten-free, but sort of in the setting of still processed food.
Yeah, gluten-free pancakes. And I just want to say about the salad dressing. If your kid is eating salad or vegetables, that’s a win! Don’t worry about the salad dressing. Like get the store-bought salad dressing if they’re eating vegetables. Good for you that you were going the extra step, but the goal is the vegetables, for sure.
Sure, right. So my children have had a vegetable and some fruit on their plate for every meal, like 365, seven days a week, 365 days a year. They’ve always had that. So that was something that I knew was important that I did from the jump. But then moving through to where I really am now, where it’s more vegetables than anything else. We do animal protein, we do good fats, but it’s more vegetables than anything else. And how can I incorporate those in there? But I think that I’ve held true and I’ve dabbled a little bit in the supplement world. We’ve talked about this, but I’ve really held true to what is the food doing. And even before I knew what that really meant, again, I was sort of, can we do gluten-free crackers? Is this the right sandwich bread? Am I doing sandwich bread? What wheat do I want to use? Am I using wheat? Like, throughout, interwoven through all of that was the theme that it really is the food. And I call it “the Little House on the Prairie” philosophy to life. Like if they did it in Little House on the Prairie, then that’s what we should be doing. So again, when they, I don’t know, went to the store and got their one piece of penny candy and that was their piece of candy for the whole week. When you’re throwing back like a giant box of gummy nerds, sorry to gummy nerds, like that in and of itself fails the Little House on the Prairie test. Laura Ingalls would not be doing that, that is for sure. I mean, they were also playing ball with a pig bladder. So I mean, there’s some level of interplay that we have to moderate.
You know, I’ve not heard that as a standard before, but it’s a pretty reasonable standard. Were they doing it on Little House on the Prairie? So that means you are churning your own butter then, for sure?!
Well, I mean, that’s a goal, but we’re not there yet. But the outside, I mean, all of the things that we talk about, the being outside, I mean, I remember people would be horrified. I’d look over and Chelsea, who’s my free spirit, would be like, licking the pollen on the play set with her tongue. And people were like, well, maybe it’ll help with seasonal allergies. I don’t know. It seems smart. I’m going to let her lick it. We’ll see what happens.
To be clear, Janet is not advocating licking pollen for seasonal allergies. She’s just saying, you know, some dirt is not a bad idea.
Right. Exactly. So, you know, I don’t have the scientific answer to this. this, there’s not a lot of scientific studies that support logic because logic is free and there’s not a way to fund a test that supports logic. So a lot of it is literally my Little House on the Prairie test or does this pass my mom and grandmother’s standard? And if it does, I sort of move through and go with it. So that’s where we are with supporting our microbiome, supporting Claire. And then to your second question about how do you not be that mom? And in the setting of teenage angst and teenage stuff and all the teenagers, you know, that’s a fine line. I actually have used the phrase to Claire. I said, I am going to be that mom for things that I think are important for your safety, cell phone use, social media, food. So I do not deny them anything. We try to do the 90-10 rule. I will share with the audience, and I’m not advocating this, but Thin Mint Frosties were being advertised at Wendy’s the other day, and we were out, and Chelsea said, Mom, I’d really like a thin mint frosty. And I said, perfect, let’s get one for a snack. So, but that’s, we would do that once a quarter or once a half year. I mean, that’s a treat. That’s not an everyday, we’re going to stop and get a thin mint frosty. No.
I love that. Yeah. So that it puts it in perspective for them. This is a treat. Our everyday snack is carrots and hummus or an apple, but a thin mint frosty every now and again is what the doctor ordered, perhaps.
And I’m supporting their microbiome through the green smoothies every day, the more vegetables than anything else. I mean, I do make 100% of our meals. We very rarely go out to eat, and I’m not saying that’s for everyone. I know some people really do not like cooking, but we can talk more in other episodes or I can talk more with you about how to start implementing those very simple strategies into your life. I’m always cooking something. This morning I was roasting vegetables while I was making smoothies. It doesn’t add to my day in a way that feels overwhelming for me because this is my love. This is my passion. This is my love language to my family, but also to anyone who wants to talk about it because it’s so important.
And for people who are interested in how to get started with that, I should have this episode number written down, but we are up to episode 47. So I don’t know the actual episode number for all of these old episodes, which is a good problem to have. But in this season, and I’m pretty sure this was in 2024, when we did “5 Simple Steps to Get Started on your Food is Medicine Journey”. And one of the steps was “always be cooking”, not in the sense of Little House on the Prairie, you know, woman’s places in the kitchen, not at all. But in the sense that always be sort of doing a twofer. If you are in the kitchen cooking, cook two or three things at a time. So if you’re in there roasting vegetables, throw some stuff in for soup or broil some fish or chop up some vegetables. Again, not “your place is in the kitchen”, but when you are, maximize your time in the kitchen. And I thought that was such a helpful suggestion in that episode. So if you’re interested again in this food is medicine journey and simple steps to get started, that’s a great episode to check out.
Yeah, and you know, I mean, we’ve talked about this too. I mean, I’m a single mom, I have two busy kids. I’m running around a very busy suburban area doing extracurricular activities. I mean, you know, I’m laughing internally because Robynne and I had attempted to film this episode a couple days ago and it didn’t go off like we thought. And I’m in my $10 Target shirt. I was like, that worked before, it’s going to work again. I want to be a relatable person to the audience. I am not doing anything extraordinary. I’m not doing it, you know, in any extraordinary way. I’m just doing it. And so that’s what I want to be encouraging about is that anybody can do it.
Well, you’re doing it consistently. And I think that is an extraordinary thing because I think all of us have these, you know, flashes of genius where we’re like, yes, let’s churn our butter and do all these things, but it doesn’t last. And part of that is maybe because we set a goal and a standard that’s too high, but it’s just the consistent things. I mean, maybe you’re not cooking every meal, but maybe you’re making sure that one meal a day is a home-cooked meal and you’re all eating it together. Maybe you’re making sure that the treat as snack is once a week instead of daily, or once a month or whatever it is. And it’s just really that consistency and setting the expectation for your kids that this is a special thing. This isn’t the thing we do all the time, but it’s okay to do it every now and again. Or we all sit down to eat dinner together. We all contribute, depending on how old your kids are, to putting this meal together. It’s not going to be the most delicious thing you’ve ever tasted every time, but we’re gonna sit down and we’re going to enjoy it together. So I think that is really, quite frankly, extraordinary. And I do want to ask about Claire, because 12 is an interesting age. I was chatting with a friend and colleague recently about her daughter who’s really struggling with some eating issues. And she was saying, you know, she’s yelling and she’s upset and, you know, she’s always criticizing what I’m saying. And I’m like, yes, at 12, your daughter is like, why are you breathing like that? It’s so annoying. I mean, like, just your very presence is irritating for a lot of 12 year old girls. I know mine was to my daughter and probably still is at 20, but hopefully less so. So how is Claire navigating things, not as a cancer survivor, but as a 12 year old with that mom?
Yeah, yeah, Claire, both my girls are remarkable and all parents would say this, but Claire is truly remarkable. She is wise beyond her years. I think that she has internally processed the gravitas of her cancer journey and I don’t know, really is exploring her faith and what that means and our faith as a family. We talk very openly. And I mean, one of the things that I do, I’m kind of a lover and a fighter. I mean, I am an aggressive lover of my kids, but I love nothing more than a good knife hand mom lecture at my girls. And, you know, I call it love yelling. I’m like, I am love yelling at you right now because this is how I feel about this. And Claire manages all that. In fact, the day of question that we were talking about filming this, she and I had kind of a knockdown drag out on the way to the bus stop. And I was feeling horribly guilty about that because she had asked for one more thing. And I said, you know, I cannot manage one more thing. And it sort of deescalated from there. So we’re having very real conversations, but I guess what I love and appreciate and is sort of my love song to my child is that she is so emotionally aware of herself. And even in the setting of us having an argument where I was kind of losing my mind, she was like, mom, hey, you know, I’m really trying to say this to you and I feel like you’re turning it around and saying this. So she is a horse of a different color in that way. I was just standing outside the dance studio with her doing her hair and hugging and kissing on her and she was hugging me and I’m like, when are we, when is this going to stop? You know, hopefully never. We have a super unique relationship in that way, but I don’t know. I mean, I think that she does get frustrated with me, you know, she is the only dancer in her entire dance company who doesn’t have a cell phone and that hurts her heart. But there are things in my heart that I just feel very convicted about. So, you know, leading with love and allowing her to think that I’m a pain in the backside is probably where we are right now, and it’s gonna evolve. And I might be crying to you in a year about a whole other situation, Robynne, so stand by. But I think that we’re, in terms of the food, the discussions, the openness, I mean, she loves those things. She loves sending you a video and talking about gut stuff.
I love getting those videos talking about their gas or what they picked from the garden. I mean, it is the sweetest thing. And it is very sort of Little House on the Prairie and I love that. And of course they’re all gonna grow up, but I think we can all hold on to a little bit of Little House on the Prairie. Janet, I want to thank you as always. You are a wonderful colleague and friend and mother and podcast guest. So thank you so much for sharing so generously and a huge thank you to Claire and also to Chelsea.
Yes, thank you so much. And just, you know, wanting to give a lot of support and grace to the podcast audience and to you too, you know, these are hard topics and I have joy because of our outcome but I again just also want to reiterate how difficult it is as a parent of any child to watch another parent supporting a child through a chronic illness. And so I do have a sympathetic and compassionate heart for that and I want to also give some space to that too because it’s a hard road. And just want to love anybody out there who’s maybe not feeling quite so joyful and happy listening to this, that there’s space for that too.
Thank you, Janet. I really appreciate that. I want to leave you with three thoughts about illness, whether it’s you going through it or someone close to you like your child.
1. When we say to someone, you have the power within you to be healthier, that does not mean that it’s your fault that you were sick in the first place. That is not the message.
2. Sometimes people don’t embrace their full power and they don’t do all the things they can do to help restore their health in the setting of illness because they think that if they do that, it’s an acknowledgement that the illness is their fault. So it’s critically important to separate this idea of empowerment from blame.
3. Whether you’re recovering from cancer or dealing with a chronic illness, how you nourish yourself is so important. And that doesn’t mean that there’s never room for a thin mint frosty, but it does mean trying to be consistent about the basics, unprocessed whole foods, lots of fruits and vegetables, and being kind to yourself.
So that’s it for this episode of the Gutbliss Podcast on balancing life choices after a serious illness like cancer. Thanks again to our guest, Janet Jumper, and to Claire.
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