A Mother's Resolve

When even a little bit of powdered milk in a bowl of ice cream can cause an extreme reaction, navigating your child’s food allergies becomes challenging—and highly fraught. In this episode, Holly Esteves describes the challenges of keeping her son safe in the face of his allergies. She explains how faith, diligence, and lots of medical advice help her keep her son safe.

Visit https://www.mountsinai.org/clinical-trials to see if you're eligible to enroll in a clinical trial with the Mount Sinai Health System.

Check out more episodes of Road to Resilience —as well as guest pictures, transcripts, and more— on the Mount Sinai website.

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Visit https://www.mountsinai.org/clinical-trials to see if you're eligible to enroll in a clinical trial with the Mount Sinai Health System. Check out more episodes of Road to Resilience—as well as guest pictures, transcripts, and more—on the Mount Sinai website.

Transcript

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Holly Esteves: [00:00:00] Can you sing wise men say?

Jackson Esteves: Wise men say, only fools rush in, but I can't help falling in love with you. 

Stephen Calabria: From the Mount Sinai Health System in New York City? This is Road To Resilience, a podcast about facing adversity. I'm your host, Steven Calabria, Mount Sinai's, Director of Podcasting. You're hearing the singing voice of a toddler named Jackson, the middle of three children who live on Long Island outside of New York City.

Jackson was diagnosed with severe food allergies when he was 11 months old, specifically dairy tree nuts, peanuts, sesame seeds, and egg. Jackson's allergies have been severe enough that they've altered the lives of both him and his family, even to the point he's experienced several life-threatening anaphylactic reactions in those situations.

It was his mother, Holly, who promptly treated Jackson with [00:01:00] epinephrine, followed by emergency room visits. On this episode of Road to Resilience, Holly shares Jackson's story illuminating the continued severity of food allergies and the lifesaving potential. With clinical trials with Jackson now 11 years old.

Their life together also symbolizes perseverance in the face of ever present threat. We're honored to welcome Holly Estevez to the show. I want 

Holly Esteves: let you he say thank you. Thank you. 

Stephen Calabria: Holly Estevez, welcome to Road to Resilience. Thank you. It is great to be here. Can you take us back to the moment that you first realized that.

Your son suffered from something that was out of the ordinary.

Holly Esteves: Absolutely. So Jackson was my second child. We were making some spinach pancakes one night. I was serving them up for both of my children. My oldest daughter and Jackson, who was about 10 months old at the time. He had just a couple of bites on his little tray.

He was enjoying them, but within five minutes he [00:02:00] was covered in hives. So all throughout his chest, his neck his face. So I gave him a small hit of Benadryl and we were in the allergist's office the next week to figure out what was going on.

Obviously I didn't feed him with anything that had any egg in it. I was really frightened at that point. And that is when we found out that he had multiple food allergies because of the results of his skin test.

Stephen Calabria: And which were those?

Holly Esteves: So he was diagnosed with severe allergy to peanut, tree nut, sesame seeds, eggs, and dairy when he was 11 months old.

Stephen Calabria: Just that?

Holly Esteves: Just that.

Stephen Calabria: Just most of the things that people, yes, and what was going through your mind at the time?

Holly Esteves: When the doctor first looked at me and communicated that is how he was going to be diagnosed, I was completely overwhelmed and looked to him and said, what do I feed him? Right away, you're searching for answers and support.

I think he said something to the effect of, that's up to you. Understandable. He's not a dietician or a nutritionist. His guidance was just to [00:03:00] avoid the food groups. So I walked out of that office and I called my husband. And the emotions I was feeling at the time were deep.

They were full of gravity. I felt very alone. I felt isolated. I was really scared. All I kept thinking is I don't know what to feed my son. That's almost everything. I was thinking that we were moving into that next stage of solid foods that would be yogurt or cheese sticks or these little things to get that calcium and that protein.

It was very overwhelming. I remember my husband said what are we supposed to feed? I'm like, lettuce and I was crying. I said, I don't know. I can't answer your question right now.

So it was just that feeling of hopelessness and helplessness at the time that sort of took over in a fight or flight response. I was feeling flight at the time. I just wanted to escape.

Stephen Calabria: And slowly but surely you start making the decisions, gathering the knowledge that allows you to move forward in a productive way.

Holly Esteves: I would say within a [00:04:00] day I had developed the resolve to face this head on. It was not something I could run from. We have to eat and we have to drink. So I said to myself, I've simply got to, I've got to figure this out.

I started looking at recipe books. I started thinking about how I could modify recipes. I was suddenly giving myself more time at the grocery store because I knew I had to look at every ingredient list.

I definitely had doubts. Am I catching the right thing? Am I missing something here? I really stuck with vegetables and fruits for a while because I felt like that was safe territory.

But I knew pretty quickly that I was going to have to move into just other food groups with the right modifications to keep him safe and to take control. I basically said, I can't let this control me. I have to make it work for us.

And facing it head on is exactly what I needed to do. So I will tell you, Stephen, I started jumping into the kitchen. I was spending a lot of time in the kitchen. I was doing a lot of cooking. I remember I was up late.

I was the only one up in the house at that time, [00:05:00] probably for a few weeks. I'd be up till two, three in the morning. I work full time, so I would have to really focus on my food prep and meal planning later, after the kids were in bed.

And I turned to Instagram and I developed my own little handle. It was called Allergy Mom's Kitchen. Just to start posting recipes and to try to connect with other people who are in the same situation because that's where you really draw the most support from.

So that was great. I just knew there was a social aspect now to what I was doing. I wasn't completely alone. I was thinking about helping others, definitely following others to see what they were doing, to see if I could learn through them.

And slowly but surely we made it our own. And we persevered.

Stephen Calabria: Now, this being something of a medical minefield sounds incredibly daunting. And please tell us if this gets too heavy, but what were some of the scariest moments, especially for you as a mother?

Holly Esteves: The scariest moments were, am I going to make the wrong move? Am I paying attention? I have other children. [00:06:00] Within another year I had another daughter. My daughters did not have any food allergies and I knew pretty quickly if you have a peanut allergy, you can probably calibrate your home so it's peanut free.

When you have allergies to multiple food groups, it's very hard to decide I'm going to free my entire home of these pro food proteins and just make sure everyone's diet is tracking along with what Jackson needs. My son.

So having other food proteins that were really safe for a lot of people, including my daughters, myself, my husband. Knowing yet how dangerous, how life-threatening they were to my son, I had to be on alert.

It was this incredibly heightened state of hyper vigilance. I use that term a lot, because that's how it felt. I just have to make sure whatever I'm cooking, I am paying attention. I have to be spot on. I can't be distracted.

I would have to label things appropriately. When I was, in addition to cooking, when it was time to sit down and eat, I had to be [00:07:00] really dialed in. It forced me to feel a little bit reclusive, suddenly going out to family events, holidays, parties felt more overwhelming in a sense that they had never been before.

And I was worried for my son. He was young. I didn't know if another house was not set up for it, could he walk around and grab something off a table if it's a holiday, because he wouldn't have known better.

So just having that sense of hyper vigilance with every meal prep, with every bite we eat a couple of times a day. So it just was unrelenting. That is I love the term you use medical minefield.

At any moment you feel like you're just a bite away from what could be a fatal emergency. So being on in that state of hypervigilance was necessary and that's how we got through. There were certainly accidents which I'm happy to talk more about.

When my son was about five or six, we had put on a barbecue for some friends, and I had given him a hotdog, [00:08:00] and I had bought hotdog buns that I thought were safe. There were no visible sesame seeds on anything. I had glanced through the ingredients list.

I didn't see that it had in fact listed sesame seeds in the ingredients list. It was towards the end, but that was still early, earlier days when I was getting used to really critically reviewing every single item in every ingredient list.

He had the hot dog and he came up to me and said, I don't feel well. You have all five or six years old of him. Mom, I don't feel well. I feel really sick. Within minutes, he was in the bathroom vomiting, and after he had vomited, he said, it's really hard for me to breathe.

At that point, I knew I had to give him an EpiPen. It was very stressful. Excuse me, I was afraid that I was going to lose him in that moment for eating a hot dog, so I gave him the EpiPen.

And I, my husband called 9 1 1 immediately and all through my mind, I'm like, am I [00:09:00] overreacting? Is he just a little nauseous? Did it just not agree with him? Is something stuck in his throat and that's why he's having a hard time breathing.

You just think of all the reasons why you could be overreacting, because you don't want to administer an EpiPen, you don't wanna slam your little kid with a needle in the leg when you're not a medical professional or used to that kind of thing.

Probably even for doctors or nurses, it gets a little tough when you're dealing with your own children, but. I did it because in the back of my head, I had paid attention. I had learned don't be afraid of the device. Just be afraid of the delay.

If you can get that EpiPen in as soon as possible, that's what's going to save the life. Because once the body takes over, a point of no return will hit where you just can't get them back.

So I gave him that EpiPen 9 1 1 came, he was ambulated to the hospital where they completed their protocol. He survived and I was grateful. It created a lot of fear in all of us. It was all of a sudden, my worst nightmare imagined, and suddenly I was putting my, just my soldier hat on again in the [00:10:00] kitchen.

Every time I cooked, every time he ate, suddenly I was watching him like a hawk. I was helicoptering in a way. I once said before I had kids, I'll never be a helicopter parent. Now I was forced into it just as a mere matter of survival.

He did experience anaphylactic episodes another two or three times. One time we were in Vermont at a restaurant and I let my guard down a little bit, and I had said that they knew about our allergies.

I had communicated them on the reservation to the manager, to the waiter, to the server. And we had gotten through the meal. Everything was perfect. We were having a great time, and then we thought about dessert.

We typically never order dessert because of his dairy and nut allergies. Typically, if they have what I know is a dairy-free sorbet, which is rare, or a fruit plate, that's what he'll get.

Which is hard for him because my daughters are getting like, alright, they'll get a piece of chocolate cake. It's very hard to balance who doesn't get what tonight and who should.

Stephen Calabria: That's hard for adults, let alone children.

Holly Esteves: It really is. It really is. So I'll typically bring him, I always bring stuff for him, [00:11:00] but it's not the same as ordering something and just feeling like you're getting to enjoy, dessert with everyone else. So the server had said, we actually have a dairy free ice cream.

And I'm thinking, oh, of course, Vermont, Ben and Jerry's, they're at the head of the game in terms of providing dairy free options for kids for ice cream. So I didn't press further. I just said dairy free ice cream.

Okay. What's it based with? He's like, coconut. I'm like, okay. I thought at that point we were in the clear. Sure enough, unfortunately the server did not realize there was powdered milk in the ice cream and Jackson, within minutes, his lip blew up and once again, he was having a hard time breathing.

Went out onto the porch, administered an EpiPen called 9 1 1. Ambulance was there. Thank goodness, within minutes because there had been another call in the area.

Otherwise we would've been in a real emergency 'cause it could have taken 20 minutes to get to where we were. He went to the hospital again, he survived. They did see some swelling in his throat that we had mitigated with the EpiPen.

So I just, I would say to [00:12:00] anyone listening right now and to any allergy mom or dad, or even someone dealing with allergies themselves, just don't delay. Just don't delay. You've gotta get that EpiPen and if you have the slightest feeling that something is wrong, I would I administer it.

Stephen Calabria: We talk on this show a lot about flexibility, cognitive flexibility, which is a core pillar of resilience and parenting often requires flexibility, so I'm told, but parenting a child with such serious allergies demands extraordinary problem solving skills and the ability to think on your feet. How has that journey changed you as a parent?

Holly Esteves: I learned I think a long time ago that you can either focus on the problem and be afraid of it, or you can turn your energy to the solution. And if you focus on the problem, you're going to let the problem take [00:13:00] over and you're going to miss out on life.

You're going to miss out on what life has to offer if you can't find a way around or through or over what the challenge is. So I think with Jackson's allergies, I said right away, this is my son. I'm going to fight for him. I'm not going to be afraid. I have no other choice.

I have no other choice in the matter. So it's either just continue to deny or think about how difficult this is. It makes things more convenient. Sometimes we miss out on the joy of a simple party, the ho hum stuff. It, it is very easy to feel alone and sorry for yourself.

And I think anyone has a moment to, you're entitled to that, right? Anyone within any challenge, feel sorry for yourself. Like you've been there for a while.

Stephen Calabria: Why me? What did I do?

Holly Esteves: Exactly, but then I think it's really important to just take a deep breath and stand up and say, I don't have to let this get the best of me or my [00:14:00] son or my child, or even if I myself am dealing with it, I'm going to make it my own and own it, because I just don't have any other choice.

So that was really it. I just made it my own. That was liberating. It's almost, it's liberating when you just say there's no other way to go here, but through, and when you accept that, you take everything on with it and you just find grace.

You find grace, you dig in, you find that grit, you connect with it, and you make things work for yourself.

Stephen Calabria: Was there a turning point at which that kicked in for you?

Holly Esteves: Yeah I would say, probably the first year or two I was still in this sense of denial. We were doing it. I was helping him. I was cooking for him, but I always had this chip on my shoulder. I did. I'm like, this isn't fair.

Why does my son have to sit alone at a pre-K table? Because the program isn't, even if they were peanut free, they're certainly not five allergen free. So he's gotta sit alone. That's not fair. This isn't fair. Oh, we're going to Christmas Eve again.

Now I have to worry. I was [00:15:00] really starting to miss out on the joy. And I didn't want to miss out on the joy. Yolo. It's like you only live once. Am I really gonna let this cannibalize my ability to participate in life in a way that brings me happiness?

Because it's what we all need to get through the dark times and the low times. So I turned around and I said, I'm really gonna own it. I dug into my Instagram handle, I connected with other families. I talked to them about their experiences. I tried to lend tips.

I started empowering my son. This is the burden you have been given by God, and it's because He believes you can get through it. So we're gonna rise to that occasion, and I believe you can get through it and you're gonna rise to that occasion because you have to believe you're gonna get through it too.

Stephen Calabria: Now you've touched on the role of faith.

Holly Esteves: Yes.

Stephen Calabria: What role specifically would you say Faith had in navigating this?

Holly Esteves: I consider myself to be a very spiritual person. I was raised Christian. [00:16:00] I believe in more, I believe in greater than. I also believe that we all can tune into faith and take from it what we need and those moments where we need that helping hand, that guiding light to believe in something greater than ourselves.

And. I prayed a lot and I talked to my son about praying a lot. You're not alone. We believe in Jesus. We believe in God. We try to get to church from time to time. I was like, you've got to turn to God.

In those moments when you don't feel that there's anyone else to speak with. It gives you a chance to be alone with your thoughts and to connect in with something and someone who's not here, who's going to listen to you with no prejudice, no bias, undyingly.

So find peace with just speaking to someone that you can draw some support from. So I always turn to my faith and I've encouraged my children to turn to their faith so they, to remember they're not alone.

There is a greater power, [00:17:00] and they are guiding us through this life. And there is a lot of magic in this world, and there's a lot of good in this world. So just to focus on drawing from your faith to remember that other people are good, experiencers are good, life is good.

Even when it's really challenging and you feel like you've been overburdened in a moment, try to work through that because you've gotta come out on the other side. And remember, if you st spend too much time there, you're gonna miss out on all the great things that, that's what life is really about.

Stephen Calabria: Now after you had these realizations, how did things change? Did Jackson's overall demeanor and feelings improve?

Holly Esteves: Yeah. I think for a kid it's really hard and sometimes kids like to milk and certainly, in my case, Jackson has definitely used it for some more attention or for some more sympathy, or, can I just get a nicer Lego set?

Because look at, all the, I'm suffering here. I'm suffering here, so help me out. I'm entitled to more gifts, more [00:18:00] love, more attention. So I think all children and even adults go through a moment in time. I feel like I'm owed, right? This is so hard. Not everybody goes through this.

So he's entitled to that, and I definitely indulged that from time to time, and sometimes when his sisters would be like why is he getting that? I'd be like, just remember at the birthday party when everyone's getting a piece of that awesome cake, your brother's getting a cupcake out of the freezer.

So just try to have some grace and humility and patience and celebrate. Other children might get a little bit extra in a moment that you are not, because maybe in mainstream life, you guys are getting the extras all the time that they're not able to enjoy.

So that's how we manage that in terms of Jackson getting to a place where he started feeling a little bit more, "okay, I got this." He leaned in, I would say, when he was about eight or nine. And it was really after we talked about the fact that you're special, you're unique, you've been given a burden that you can really lean into and make your own.

So own it, be a leader, lead yourself, lead with [00:19:00] grace, lead with confidence, and he started like going to parties saying, it's all right mom, I've, I'll take this. That's fine. No big deal. We also talked about, by the way, enjoying parties and restaurant experiences more for like just being with other people and being out.

A lot of people go out because they're excited about their new meal. I'm gonna try this new restaurant. I hear they have an amazing new steak on the menu, or an amazing new vegetarian dish, whatever it is.

When we go out, we make it about really connecting in with one another and we try to make the food secondary and with his sesame allergy, we started, there were times when my daughter's I really want that bread basket.

And I'm like, all right, you can have bread, typically I'll bring something for Jackson, but Jackson will be like, I can't have it. And I'm like, and you know what? That's okay, because you're gonna have more room for your meal and we know it's going to be safe.

So we found these little coping mechanisms and strategies and everyday. That have helped him turn that point to become more of, I'm gonna make this work. I'm gonna lean into what I believe in to help carry me through.

And in terms of like [00:20:00] unintended silver linings it has made him more of a leader at a young age. I get this feedback, I get from his teachers and his coaches all of the time. Jackson is a, they use the term natural born leader.

He stands up, he believes in himself. He's really nice to other kids. So I think his food allergy disease, it is a disease, I think his food allergy disease has shaped him. I think he tunes into everyday things with a sensitivity and an awareness that many other children would take for granted, naturally, certainly that I did and still do when I'm not with him.

And that, just gives him this wisdom. It's a young wisdom that he had to grow into.

Stephen Calabria: He had to face adversity, life-threatening adversity at a far earlier age than a lot of people do. Some people never do. And so he's had to mature at a much faster clip than is common. Many parents with children with chronic conditions, though, struggle with [00:21:00] fear and uncertainty.

Have you found, other than the social aspect, which we'll touch on more in a moment, have you found any coping strategies that you thought were helpful and might inspire other people and families?

Holly Esteves: It's a great question. It gets to the core of what community really means.

I would say, first off, before I answer that question specifically you mentioned the term adversity and something I've shared with you before and it means a lot to me and I find myself repeating it often.

When I talk to other people that I work with when I've been involved in panel discussions or a networking opportunity.

I was a member of a women's professional networking group not so long ago, and I remember there were about 12 of us on a call talking about what really what were some of those moments in your life that shaped you, like really made you who you are today.

Every single one of them went to a moment in time. That was a huge challenge for them. That was difficult. And [00:22:00] you realize that happy moments are absolutely life changing and life altering. And they're joyful. And they're incredible and they carry us forward.

They give us that levity and that lightness that we need. But it is those, it is those challenges, those moments of adversity that really shape us into who we are. They we're our integrity and our character is forged in the fire of adversity.

And I often tell Jackson that Mo people become who they are. They grow into themselves, they become leaders, they become people that other people can rely on when they've had to go through that fire themselves. It's like it takes a lot of pressure to make a diamond.

So just remember that all of those moments that feel so difficult, just remember, I'm learning, I'm growing, I'm going to become better if I accept the lessons from this that I need to.

In terms of what advice? Would I share with other parents or how what things have helped me that I could share with others. Whereas a mother or a father with who, [00:23:00] with a child who is sick or who is has a disease something chronic, something terminal, it, we're also different and unique.

Everyone's situation is incredibly unique, but I think what binds us together is the love for our children and the fact that it. At times just feels so unfair. So how do you get through this?

And nothing has made me feel better than to lean into people who have had to deal with it themselves. Just to get that hug, just to remember that you're not alone to look at in someone's eyes or to be held by someone who is dealing with ex like food allergy disease or a person who has a child with cancer.

It is that community of people who have been there really, you rely on everyone. I've, I have had neighbors, I've had good friends. My family, everyone has provided so much support.

They're [00:24:00] invaluable. They are my daily support system. But in terms of where I would draw strength and empathy and just that remembrance that you're not alone and we can carry one another through, that is with other parents, really.

Or people who have had up close and personal experiences with us and have lived through that fear and that anguish. 

Stephen Calabria: Were those communities that you, yourself started or did you find them and join them? 

Holly Esteves: I've found them. Fair Food Allergy Research and Education is the largest lobbying and advocacy organization for children, American children and adults with food allergy disease.

Leaning into them, tapping into them, and then meeting networks through some lobbying activities that we would do together up in Albany. Getting on a phone call, following someone on Instagram.

Sometimes I, I've sought it out. And within my own community I haven't established anything formal, but I reach out to people. I'm on the board of education within my community and I've talked of food allergy disease and how we show up for that is [00:25:00] something I'm pretty vocal about.

So I connect with other parents through those sort of modalities and we just talk to one another. We talk about what are some of the challenges, what are some things that we can try to fix together?

How can we support one another, giving one another, that hug. It is really helpful.

Stephen Calabria: There is one aspect here that we haven't touched on that is a huge part of Jackson's story and that is clinical trials. What role did clinical trials play in his trajectory and how have clinical trials led you to taking on a more robust role. 

Holly Esteves: Yeah. I'm so glad you brought that up. Jackson outgrew his egg allergy pretty early on, and he still was dealing with four.

We have turned to Mount Sinai for Jackson's food allergy care and management, and they have been incredible, and they're also part of that team of people who are up close and personal with this kind of thing.

So you just always feel that sense of reassurance every time you walk into the office and speak with a [00:26:00] doctor or a member of the staff or a nurse.

We had gotten a letter that they were starting something called the Cafeteria Clinical Trial, I think it was back in 2019 which was going to focus on peanut oral immunotherapy. And the goal of the trial was to try to reach this, to try to help these kids with a high threshold peanut allergy.

Try to get them to a state of sort of this sustained un reactivity. So there are many oral immunotherapy trials that try to get children over their peanut allergy, but the maintenance plan is exposure to peanut every day.

This was a program that was trying to get children who could get to that state, trying to get them to a place of, okay, I could eat peanut butter today, but then maybe I won't have a sandwich again for another month and I'll be okay.

The trial was 18 to 24 months. I developed an incredible, just, again, network of support working with that team. The doctors were incredible. The nurses were amazing. The level of compassion and attention [00:27:00] and just sheer empathy they had for you every time you walked through the door was wonderful.

And ultimately, Jackson ended up being part of the ingest group and having exposure to peanuts every day for that 18 to 24 months, and he ended up overcoming his peanut allergy.

I think most of the ingest trial or the ingest participants did, I think it was a huge success story. So he can safely ingest peanuts right now, and that has opened up our diet. So now we don't have to fear peanut butter or peanuts the same way.

And that just brings you to another dimension. It was amazing to be a part of that. It was amazing to see him, to know that he could go out into the world, and that was one more thing he didn't have to worry about.

Stephen Calabria: Or that you didn't.

Holly Esteves: Or that I had to worry about, exactly. And that just felt if, if you're like walking around with a big pack on your bag and you're going up this mountain, I was able to drop a little weight with the egg when he was about seven.

Dropping the [00:28:00] peanut was probably three times the size of that. So I just each, with each journey, it's it just feels the load is a little lighter and that felt incredible. 

Stephen Calabria: The journey itself, and especially the foray into clinical trials, has clearly endowed you with a greater sense of meaning and purpose, but you have also taken on something of a activist, advocacy role as far as clinical trials go. Could you talk a little bit about that?

Holly Esteves: Yes. So I fully believe in clinical trials, and I am in just thrilled to see, I, it's amazing the change that has happened even in the past decade in terms of the, some of the funding that has come through the seriousness of food allergy disease.

Just the level of awareness and consideration that particular disease is being given right now is amazing. There is prevention, there is management, and there's treatment.

And I think the [00:29:00] treatment part of this is so important because for so long that conventional wisdom, even though now conventional wisdom lasts maybe a year before it changes, it's incredible how quickly we move in this information age.

The conventional wisdom was avoid, avoid, just keep avoiding avoid, and eventually they'll grow out of. That never sat right with me, that just felt like that's too much outta my control. Can't we do a little bit more here?

So to see this sort of just overall like groundswell of clinical trials and treatments and people understanding the nature of the disease and how can we work through this by understanding exactly how that child is reacting.

And to what extent are they reacting? And there, is there a window of opportunity to start exposing them to small amounts of the protein to eventually get them over? I love the idea of clinical trials. I would love to see more of them.

I've talked at length about Jackson's experience with the cafeteria trial with CBS News. Scientific [00:30:00] American wrote an article about just the overall, like where we're going with peanut allergy treatment.

I would love the next, I would love to see more trials if anyone's listening in the dairy front. So sign me up. But I think. Clinical trials are life-changing for people, and they really do make a difference.

The success rate that they saw even in Jackson's cohort just shows if we can start treating kids earlier and in the right way, for them to be able to overcome this, it means so much to them and their families. 

Stephen Calabria: What data can you give us on the prevalence of these kinds of allergies among both children and adults?

Holly Esteves: So the last time I checked the numbers, I know that I think it's fair that had published, it's more than eight or 9 million American suffer with food allergy disease. Now in terms of that breakdown between children and adult? I don't know.

I can tell you in school districts I've seen that the average, right now they say the [00:31:00] average number of students per school district, which, metrics are tough.

Data can be spliced in a million different directions and everything's relative to what sample population you're talking about. So take this with a grain of salt, the average school district in America has 60 children in that school district with.

A food allergy, or multiple food allergies. And there have been a lot of modifications and schools have changed their culture.

They've expanded beyond just being peanut free to really talking about how we manage birthday parties and how we educate on food allergy awareness and there are more EpiPens now in the schools.

Like the schools will, a nurse will have an EpiPen, an ambulance will have an EpiPen. Up until, I think it was 2017, it was Elijah's law that was passed. I helped to lobby for that. That was when I think they were requiring that daycares be appropriately trained in anaphylaxis realization and management. Like how to spot an anaphylactic reaction and how to treat it right away.

So I will continue to advocate for [00:32:00] children and adults with food allergy disease because it's scary and I think it needs to be taken seriously. It's not a preference. It's not. It's not something they chose.

I ask anyone else who's not dealing with food allergy disease directly to have patients and to understand when someone's coming in and pressure testing what's in a certain menu item.

They're not trying to be a pain. It really is a matter of life or death.

Stephen Calabria: Most importantly, how is Jackson doing now? 

Holly Esteves: Jackson is doing great. He's, living life. He is very active. He is in karate. He plays flag football, he plays soccer. He loves basketball. He's a great student. He loves his friends. He's very social. He cooks, so he cooks a lot.

He really is starting to understand what he has to look for and ingredients to know whether or not he's safe. He can. He's been trained in how to administer his own EpiPen. So I think he's working up the courage.

If he is ever in a situation, he's going to have to do that if I'm not around. Every parent [00:33:00] understanding when to really bring your kids into how to manage their own lives and take control of their challenges and adversities is incredibly important.

So getting Jackson in the kitchen, I've told him everybody loves a chef. Just learn, cook for yourself, cook for your friends. They'll wanna be around you. Be adventurous with food only when you're at home and you're preparing it yourself. So he's grown into this.

It's still challenging. He still sometimes feels this is unfair. Especially, it's if everyone's running to an ice cream truck and they're walking away with these three foot cones, they're dipped in chocolate and he's getting, a snow cone because it's just full of bio-engineered colors and ice.

But hey, it's safe. It's hard. It's hard, but he's owning it. I'm proud of him. 

Stephen Calabria: Since he has been able to start eating peanuts, what have been the dishes that he most wants to eat?

Holly Esteves: So Jackson, it's funny how I realize now when you don't grow up how diet and preferences for foods is so conditioned in us as we're [00:34:00] from the time we're young. He is not a peanut lover. He likes it. He likes peanut butter. He likes it in like a cookie.

So if we're, if sometimes I'll do a, like a little I'll do a, what is that fruit? That prune, not prune. What are those little things called? They're not figs. They're not prunes. They are dates, so I will, they're dates so he'll, we'll make dates and we'll drizzle them with a dark chocolate with no dairy in it and peanut butter.

We'll make a peanut butter cookie that he likes. He'll take a sandwich every now and then as long as it's sweetened up with some jam. He's a sugar fiend. He is a sugar fiend, like most kids. So he enjoys real foods, like he enjoys pasta with homemade sauce and meatballs that we won't make with cheese or breadcrumbs.

We have to modify. We'll do like nutritional yeast. Like we, he loves steak. He's a meat eater. He's a carnivore, so he would love, he loves steak with a baked potato or some french fries and some broccoli, so he goes for real foods.

That's probably another [00:35:00] silver lining of this whole thing like. He connects in with the real food. He has a real craving for that kind of a thing, and that's what he gravitates towards. He loves peanut butter.

He actually, there's a Ben and Jerry's flavor of dairy free ice cream made with a coconut base that has peanut butter in it. I dunno if it's like the dairy free tonight dough that he loves. So yeah he's happy.

He's, he is enjoying, he's enjoying life with no peanut allergy for sure.

Stephen Calabria: Jackson has been fortunate to have a mom who is so engaged and it sounds has had the time and the resources to fully throw herself into the fight.

What would you say to parents of children with similar allergies who either because of professional scheduling problems or just personal demands on their time are not able to put in that many hours?

Holly Esteves: Yep. It's a wonderful question. So first I would say, remember there is more to life than food. [00:36:00] In this culture that we're living in America, it feels very much like we are living in a food focused culture.

There's a food truck, there's a, this, there's a, that everywhere you go there is more to life than food. So we're gonna find our way through focused on what some of those other things that make us happy, connecting in with those experiences, with the people that we love, the experiences over just the food, focus on how it makes you feel, the book, the party, the people that you're with having fun that is not so food-focused.

Second I do work full-time, but I feel very fortunate in that when this all happened, I had purposely sought out an opportunity where I could work from home. So I was working from home but I still couldn't prep food during the day.

So it really is about knowing your schedule and you have got to suddenly throw yourself into this in a way where. I, it's not about just taking one day at a time. You've gotta get ahead of this. So look at your weekly schedule. Be disciplined [00:37:00] about it.

Self-discipline is everything. Find a moment, even if it's a couple of hours on a Saturday morning or late on a Friday night, or maybe for you, it happens to be Tuesday from 10 to one. Find that opportunity to think about how am I filling my refrigerator?

How am I finding the right ingredients, stocking my shelves, prepping some food, getting it ready to go, having a bag ready to go with just some items in there. Snack foods that you know are safe drinks that you know are safe. So it's like a grab and go.

It's like a new take on emergency planning. This is an emergency plan. Your kitchen is your castle, so just own it. Make it as beautiful as you can and just find the foods that you need that you can afford, that you know will work and make the best with those items.

The best thing that you can have your emergency bag ready to go. Anytime you're running out to dinner, running to a friend's, running to a daycare. It really is all about the planning and you've gotta get ahead of that.

And sometimes it will [00:38:00] mean some late nights and you've gotta dig in because you might be getting up at five in the morning to go clean a school hallway or a building office or go to your corporate job or go to teach.

There are, every parent from any walk of life can be impacted by this. So it's all about how do you take your real life situation and build in the time. 'cause that's really the biggest thing.

Finding the, if you can make the time and if you can put a plan together, this will work for you. You can make it work. It's not it's within reach for anyone. 

Stephen Calabria: Finally, what have you learned about resilience from Jackson? 

Holly Esteves: Oh, that's a heavy question. I have learned that love really does conquer all. I love my children more than anything, and I would go to. The ends of the world for them and back a million times if I had [00:39:00] to.

When you love someone, when you love yourself, like when you love yourself or when you love your child, you tap into that love and you remember. I am here for however long I am meant to be here, so I've gotta make it count for something.

And that right there I think is the foundation of resilience. Like, again, it goes back to I don't wanna let anything weigh me down or put me in the corner of life. For too long. I wanna play. I'm here. I'm part of it. I deserve to be a part of it. That's how Jackson feels.

He's learning how to embrace life with more enthusiasm and optimism, and not letting a food allergy hold him back. And whereas he's gotta be vigilant several times a day all the time, he's working through that and finding the other things that matter. 

Stephen Calabria: That's it for my questions. Was there anything else you wanted to say? 

Holly Esteves: I just wanna thank you, Stephen, and I wanna thank everyone at Mount Sinai because everything that we have experienced here has been life changing.

I wanna thank you for giving this [00:40:00] particular subject the airtime that I think it deserves, and I just hope and pray for any other family out there or individual working through food allergy disease. I see you, i'm with you. I support you, and you're going to be okay. 

Stephen Calabria: When Jackson graduates high school, we'll have a party in here. We'll have you back and we will all have big peanut butter and jelly sandwiches. 

Holly Esteves: He would love that. You gotta have the ice cream too. 

Stephen Calabria: There you go. Holly Esteves, thank you so much for being on Road to Resilience. 

Holly Esteves: Thank you so much. 

Thanks again to Holly Esteves for her time. That's all for this episode of Road to Resilience. If you enjoyed it, please rate review and subscribe to our podcast on Apple Podcasts, Spotify, or wherever you get your podcasts.

To learn more about food allergy treatment care and management, visit Mount Sinai's Jaffe Food Allergy Institute on Mount Sinai's website, or click the link in the podcast description.

Road to Resilience is a production of the Mount Sinai Health System. It's produced by me, Stephen Calabria, and our executive producer Lucia Lee. From all of [00:41:00] us here at Mount Sinai, thanks for listening and we'll catch you next time. 

With Jackson. With Jackson now 11 years old

with Jackson now 11 years old with Jackson now 11 years old with Jackson now 11 years old.