214 – Toby Brown & Jesse Hohn of Colorado Are Two Dads Who Each Have Children With Shwachman-Diamond Syndrome

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast. Working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at horizontherapeutics.com.

Toby Brown: One of the things that I learned later is that when your child is diagnosed with a rare condition, or really any kind of life-changing condition, is that, as the parent, you kind of have to go through a grieving process for your kid not being the healthy kid.

Jesse Hohn: Something that I discovered at Camp Sunshine was the parent groups, which was basically group therapy. They have a counselor there that’s really good, and she runs these sessions. It’s there that I learned how important community is.

Tom Couch: Those are our two guests this week, Toby Brown and Jesse Hohn. Both are fathers of kids who have Shwachman-Diamond syndrome, or SDS, a rare genetic disorder. We’ll hear their stories and how the two families have each done their best to navigate the world of special needs. That’s all on this Special Fathers Network Dad to Dad Podcast. Say hello now to host David Hirsch.

David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.

Tom Couch: So let’s hear this conversation now between David Hirsch, Toby Brown, and Jess Hohn.

David Hirsch: So I’m thrilled to be talking today with Toby Brown of Colorado Springs and Jesse Hohn of Littleton, Colorado, two dads who each have a child with Shwachman-Diamond Syndrome. Toby and Jesse, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Toby, you and your wife, Angela Bird, have been married for 15 years and are the proud parents of two children: Kavan, 20, and Anabelle, 18.

Jess, you and your wife, Felima, who’s a preschool teacher, have been married for 23 years and are the proud parents of three children: Ethan, 21, Arianna, 18, and Sadie, 14. Between the five children that you each have, four of them, excluding Anabelle, have Schwachman-Diamond Syndrome, or SDS, a rare genetic disorder that affects many parts of the body, particularly the bone marrow, pancreas and skeletal system.

Toby, let’s start with some background. Where did you grow up? Tell me something about your family.

Toby Brown: So I grew up in Topeka, Kansas. I have two brothers. I’m the middle child, and my parents divorced when I was seven.

David Hirsch: Okay. And from what I remember, you actually had an older brother as well?

Toby Brown: Yes, yes. My brother Joey died when I was in middle school. So when I talk about my brothers, I don’t typically mention him because he was several years older than me. But yes.

David Hirsch: Okay. Well I remember in a prior conversation that that seemed very tragic that you lost your older brother at such a young age, not only your young age, but his relatively young age as well.

Toby Brown: Yes, yes it was. It was a life moment.

David Hirsch: I can only imagine. So out of curiosity, what did your dad do for a living?

Toby Brown: My dad became an archivist for the Kansas State Historical Society when I was about eight. I think most of my childhood that I can remember, that was his job.

David Hirsch: Okay. And how would you characterize your relationship with your dad?

Toby Brown: Hmm. Distant, I guess, because of the divorce. My mom had custody and my dad had visitation, and so I was able to do things with my dad. He had his visitation one night a week and every other weekend and two weeks during the summer. But he did Boy Scouts with me, and so I had a lot of interaction with him through that.

But our relationship was not a particularly strong one, in that sometimes the time that we had was not specifically interacting with each other, but just being in the same space.

David Hirsch: So more physically separated or distant. That’s what I heard you say.

Toby Brown: Sure. That’s a good description. Yes.

David Hirsch: And was there an important takeaway or lesson that you think about when you think about your dad?

Toby Brown: So one of the things that I learned from my dad’s example was to admit when you don’t know something. It can be fun to make up an answer, but you should tell people that it’s a made up answer. I feel like my dad taught me some things, but I also learned a lot of things from his examples, rather than him actually like trying to teach me stuff.

David Hirsch: Okay. Well there is something to be said by learning by example. And I’m thinking about your dad’s career as an archivist for the Kansas State Historical Society. You’re looking for facts and authenticity. It has to be accurate, right? So it sort of goes along with what you were saying.

So I’m thinking about father figures, and I’m wondering what, if any, role your grandfathers played, first on your dad’s side and then on your mom’s side.

Toby Brown: So, again, because of that distance, I didn’t have a whole lot of time with my grandparents. On my dad’s side, Grandpa Brown was always more active, so he taught me how to drive the riding lawn mower. He taught me that you can answer things without using words.

There was one time when we were going on a hike through some woods, and my brothers and I were gung ho and in the front, and whoever was in front hit a spiderweb, just walked straight into it and freaked out and jumped to the back of the line, and the next kid hit a spiderweb and freaked out and jumped to the back of the line.

My grandpa moved to the front of the line and just was walking, and came to a spot, and stopped and turned around and started telling this story, and waving his hand all around and waving his hand right in his spiderweb, just totally knocking it out and wrapping it around his hand, and finished his story and walked on.

So yeah, that’s one of one of my favorite stories about Grandpa Brown. Grandpa Sills [?], again, I didn’t have a whole lot of interaction with him. I saw him basically once a year at Christmas, and he was always just the old guy that carved the turkey.

David Hirsch: Well, a note to you dads who are grandpas out there, don’t be the guy that’s just known for carving the turkey. Okay?

Well, let’s switch gears. Jesse, let’s talk about some background. Where did you grow up? Tell me something about your family.

Jesse Hohn: Well, I grew up in Littleton, Colorado. My parents actually still lived in the same house that I grew up in. Both my parents were special ed teachers. We would do summer trips every year. We would do lots of road trips. We went all around the country traveling like that.

David Hirsch: Do you have some siblings?

Jesse Hohn:  Yeah, I’m the youngest of three—an older brother and an older sister.

David Hirsch: And are they all there in Littleton or nearby or not?

Jesse Hohn: My brother is in Denver, so he’s fairly close, but my sister is in Springfield, Missouri, which is a lot closer to a lot of my dad’s family who live in St. Louis, where he grew up.

David Hirsch: Gotcha. You mentioned that both your parents were special ed teachers. So I’m wondering, when you think about your dad, how would you characterize your relationship with him?

Jesse Hohn: Well, he and I have a great relationship. I see him almost every week at least. I play cribbage with them. And on Thursdays he runs a local cribbage club, and then he does a less formal cribbage club with my mom and me and their neighbor. And we have a good time doing that. He’s someone that I look up to as a major role model in my life. I aspire to be the kind of father that he has been.

David Hirsch: Yeah. Well thanks for sharing. Sort of coincidentally, I’ve had the chance to meet your parents, and your dad seems quite active for his age as an endurance bicycler. And I’m wondering if that is something he passed down to you and your siblings as well.

Jesse Hohn: Bicycling? No, that was him. I mean, when I was growing up, I would go on bike rides with friends and things like that, maybe a little bit more so because he was bicycling. Because he was doing the “Ride the Rockies” every year, which is this multi-day long bike ride through the Rocky Mountains.

He hasn’t done it in a number of years, but that’s not because he wasn’t fit for it. It’s because my nephew has a birthday that falls right when he would be training for it. And so he puts more value into his nephew’s birthday. I believe there are a few other reasons, but I think that’s one of the main reasons.

But he’s certainly being active in playing sports and getting out. I think he’s passed that on. He loved to play volleyball, and he played it for as long as he could. He had a few injuries. He tore his ACL and he tore his Achilles tendon. Not at the same time, but years apart, but both while playing volleyball. And so eventually he had to stop doing that. But my brother is still playing volleyball fairly often.

He was my soccer coach and my baseball coach, and I still play soccer. He comes to as many games as he can to watch. He and my mom are at most of the games there to watch.

David Hirsch: Well, thanks for sharing. My takeaway is that he was very present in a lot of different ways. And grandfathers. Did either of your grandfathers play a role in your life as you were growing up?

Jesse Hohn: Yes. My mom is an only child, so her parents were around quite a bit. And my grandfather was a World War II veteran, and he was a pilot for one of the bomber planes. Unfortunately, I can’t remember the type of plane, but it was a bomber of some kind. And he would tell some number of stories about the war. A lot of the stories that I can remember about the war were stories that he heard, like third party stories.

But I do remember one story where he got my mom into a plane, back home obviously, and he was going to take her out flying. And he had to get the chocks out from under the wheel so it could roll. And she was in the cockpit and something happened. I think she hit something, and the plane started rolling while he was out of the cockpit.

So he had to grab onto the wing and hold the flap down, or something like that, so that it would just go in this long big circle. And he slowly worked his way up the wing so that he could get into the cockpit to stop the plane from rolling.

David Hirsch: I have this visual image—it’s like a Laurel and Hardy type of situation.

Jesse Hohn: Yeah. Well, he was also a farmer. And another story he would tell was, let’s see, my grandmother was big into knitting and crocheting, lots of crafts like that. And she knitted him a scarf one time, but she didn’t know when to stop. And so it became a very, very long scarf.

And he would wrap it around his neck several times. He was out on the tractor, and I guess one end was dragging out a little bit. It got unwrapped, and it wrapped around the axle of the tractor. And he had to work it all the way back around his neck. He said jokingly that she was trying to kill him with that scarf.

David Hirsch: Yeah. Well, both those stories have very vivid images, that come to mind. So that was your maternal grandfather. How about your dad’s dad?

Jesse Hohn: I didn’t know him all that well. He was a chemist. He got Parkinson’s disease, so he passed away when I was, I want to say 7, 8, 9, somewhere around there.

And as far back as my memories go, he’d already lost the majority of his speech. He would mumble a little bit. So I didn’t even really remember his voice at all. I was so young, I really didn’t understand very much of what was going on with him.

My cousin and I would go up to St. Louis where they lived for Christmas every year. And my cousin, who also lived in St. Louis, had come over to my grandmother’s house where we would stay. And he and I were just these young kids. He is probably a couple years younger than me, and I couldn’t have been more than five.

And somehow we got a flashlight, and we were like, “Let’s go explore the basement.” So we were at the basement door with the flashlight ready to go. And I remember seeing my grandfather at the end of the hallway just kind of shuffling down the hallway towards us. And he didn’t really say anything to us that we could understand. But he took the flashlight away from us and just left.

And so we kind of thought of him as a mean old man. Now looking back on it with the eyes of a father, he needed to stop us from going into the basement, where we’d probably get into trouble. So the best thing he could do was take away the tool we had to explore.

David Hirsch: There you go. Well, sorry to hear that he died somewhat prematurely, if it was Parkinson’s disease. My dad actually had Parkinson’s for a number of years before he passed away a handful of years ago. And it’s very debilitating. You lose your ability to sort of balance and walk, and then communicate. So I appreciate you sharing that.

So my recollection was that you both attended Cornell College in Mount Vernon, Iowa. And Jesse, you’ve worked as a tech support analyst for a couple dozen years at Software AG. And I’m sort of curious to know, Toby, where did your career take you after college?

Toby Brown: So after college…well, first a point of clarification, I just spent a year at Cornell, and then transferred.

Jesse Hohn: Yeah. And the funny thing about it is Toby went to Cornell the year after me.

Toby Brown: Yeah. So we were this close to meeting each other then, but it didn’t happen.

Jesse Hohn: But Toby’s wife, Angela was there while I was there, but we never met.

Toby Brown: Which is incredible, because the school is so small that you meet everybody. So after college, Angela and I were together at that point, but not married yet. But we had kids before we got married. And so basically after college, I became a stay-at-home dad.

I did that for a very long time, occasionally picking up a part-time weekend type job. Did a little bit of sales in there, but my primary focus was on the kids in the house and doing things to make the family run, bills, and all of that other stuff that needs to happen in life.

And then in 2007 she had a job change and we moved, and we joined a new church and I started volunteering with the church. And then eventually I was volunteering enough that they said, “Hey, we should give Toby a job.” So for a while there they were paying me to work at the church, and then the church closed. I am now working part-time at a school district. I’m working in a high school kitchen.

David Hirsch: Excellent. Well thanks for the brief recap. And the highlight, at least from my perspective, is that you were more of a hands-on stay-at-home dad for a good part of your children’s growing up. There are millions of dads that are stay-at-home dads, but it’s still the exception, not the rule. So looking back on it, it’s really a privilege to be able to spend all that time with your kids at such a formative age. I have a lot of respect for that. Thank you for sharing.

So let’s switch gears and talk about special needs. Toby, I’m sort of curious to know, before Kavan’s diagnosis, did you or Angela have any exposure to the special needs community?

Toby Brown: Not specifically. We were both in our mid-twenties when Kavan was born. I was 26 when he was diagnosed, and aside from just being aware of people with special needs in the community or in school, I did not have any contact with them. I guess the one exception to that is I had a friend with diabetes growing up, and he’s still one of my good friends, and so that friend with diabetes would be my connection to the special needs community, prior to Kavan. Obviously, once that happens, you have a whole lot of connection.

David Hirsch: Oh yeah. Your world opens up. So, Jesse, I know that both your parents were special ed teachers, so obviously you had some exposure to special needs from your parents’ occupational perspective. I’m wondering how the SDS diagnosis came about for your three children?

Jesse Hohn: Well, it started with Ariana, our middle child. Between the 12 month and 15 month checkups, we found that she had not grown at all. In the last three months, she hadn’t gained any weight. That’s a big red flag to the doctor. And he decided that he would run every test he could think of to figure out what’s going on. And so he ran every test he could and then sent us home, because we had to wait for the results.

And he called us the next day at home and he said, “Okay, all the tests came back normal except for one. And that was the CBC, the blood count.” He said, “On the CBC, there is this number called the absolute neutrophil count, or the ANC. He said a normal ANC is 1500. Anything below a thousand is considered to be to be something called neutropenia. So he said anything below 500 is severe neutropenia. And the neutrophil, which this number is counting, is a white blood cell that fights off bacterial and fungal infections.”

And so when you get into neutropenia and the severe neutropenia, the body is susceptible to getting dangerous infections. You can go septic very quickly if it gets into the bloodstream. And so he came and he explained those normal numbers, and he said, “Ariana’s number was 69.” So basically zero from where the normal is at 1500.

And he said, “I’ve made an appointment for you already with a hematologist.” And he said, “Your appointment is tomorrow at this office. This is where you’re going.” I mean, that was just amazing to already have the appointment, knowing now that specialists are not the easiest to get appointments with, especially quick appointments. You have to wait for their openings. And he found an appointment for the next day for us.

So he sent us in there. And he gave us a big warning ahead of time. He said, “The thing to know about hematologists is that almost all of them, if not all of them, are dual specialists. They are oncologists and hematologists.” He specifically said, “You’re going for the hematology side, not the oncology side. So don’t be scared when you get there and you see that sign.”

We went every day for a while, and they would do a blood draw every day, I think for a week. And each day it was like a hundred more. So like the next day it was around 150. And then the day after that, it was in the 200 range somewhere. And then the next day it was around the 300 range. And it kept doing that until it got into the 600 range, and then the next time we went in, it would drop back down.

That was just something I noticed. The doctors weren’t really pointing it out. I have kind of an analytical brain, so I’m constantly trying to find patterns in things, and that’s the pattern that I just kept seeing with her blood draws. But it really kicked off a very long diagnostic process for us.

The hematologist was telling us that in all likelihood it’s what they call benign neutropenia of childhood, which can get kicked off by other illnesses. Something like that, where a child has neutropenia, and it has a number of different causes for it. And so most likely it was going to resolve itself in about three months, or something like that.

And so we would wait three months and do regular blood draws. And if it lasts longer than that, then we’ll figure out what’s going to happen at that point. But neutropenia itself is a symptom. It’s not a diagnosis. If it’s benign neutropenia of childhood, that’s one thing. But we knew it wasn’t benign neutropenia of childhood. It’s a symptom. It’s not a diagnosis.

And so they started referring us to every specialist they could think of. We went to a bunch of them. There was one that was just across the hall from them, a GI doctor. He was actually the first doctor to mention Shwachman-Diamond syndrome to us. And he told us that he had a strong feeling that we could be falling into that diagnosis.

But the problem was that he was actually retiring in a month or two. After that, he was going to hand us off to a different GI doctor. But we were way too early in the process to get that diagnosis…or no, I know what it was. He thought strongly it was Shwachman-Diamond syndrome, and I think he ordered a genetic test to be done, because there is a known gene mutation for Shwachman-Diamond syndrome.

He had that done, and Ariana came back and did not have that gene mutation. So we moved on to try to find other diagnoses from other doctors and other specialists. There are too many to list. Neurologists and immunologists, and I mean, it was just specialist after specialist after specialist.

And it eventually came down to the process of elimination, and she was eventually diagnosed with having Shwachman-Diamond syndrome clinically, just through symptoms. Because SDS is so rare, they’re not fully certain on all the genetic aspects of it. So the one mutation that they found—or it’s not one mutation, they found several mutations on the one gene—but that one gene may not be the only one that’s involved.

So my three kids are not genetically confirmed, but we’ve been clinically diagnosed. And there’s a handful of other families in the SDS community that are clinically diagnosed as well. Every now and then we get doctors that will still come to us and start us on another diagnostic process again, going, “Well, we don’t know if it’s SDS, so let’s go through this process again, and see if we can find anything else because we don’t have that genetic confirmation.”

It’s just one more stressor for us, I guess, where we don’t have something solid to lean on. We believe it’s SDS. For a while they called us “SDS like,” but they dropped that terminology and now they just call us “SDS clinical.”

David Hirsch: So how old would Ariana have been when this symptomatic diagnosis was confirmed or took place?

Jesse Hohn: I think it would’ve been right around her second birthday. So it close to a year of going through the specialists, until we got that clinical diagnosis. And that was from people in Cincinnati. At the time, one of the leading hematologists that specialized in SDS was at Cincinnati Children’s. And we took a few trips out there, and he told us that everything that he saw pointed right at SDS, and that he had no question in his mind that she has SDS.

David Hirsch: Well, thanks for sharing. So Ariana, even though she’s number two, was diagnosed first. And I’m wondering, how did Ethan’s diagnosis come about, or how did you even think to get him tested for SDS?

Jesse Hohn: Well, with the neutropenia, when we were going through the specialists in that first year, after we found out with Ariana, they wanted to go back and see if we had missed something with Ethan. So they did weekly blood draws on him. And we did that for six weeks, and three of the blood draws came back in the mild neutropenic range, which is between 500 and 1,000. And so half of them were mild neutropenia, and the other half were on the low side of normal.

And to my wife and me, that seemed significant, but the doctor that was doing it didn’t think so. And so they thought it’s probably just because he was sick. So they moved on, and didn’t really look back to Ethan again. And so my wife and kept that in the back of our mind, but he was doing okay.

And then our youngest, Sadie, was born in 2008. And we knew to watch right from the beginning with her. And we had to wait a month after she was born, I believe, before she had her own blood in her system. Up until then it was still her mother’s blood going through her system. So once it was her own blood, they could do the CBC, and they found that she was zero. She was consistently much more severe with neutropenia than Ariana had been. And so she was diagnosed right away, a month in.

And Ethan still at that point had not been diagnosed. It was 2012, 2013, right around there. He got sick at the very end of December 2011 with the flu. And we found out that he had both types of the flu that season, the A and B. Then January rolls around, and he gets this cough. The cough was just a series of coughs, about 20 coughs in a row, and he couldn’t stop.

And then half an hour later it would happen again. And then it was just happening throughout the day, all the time. We took him to some doctors, and they were trying to figure that out. Eventually they helped him to get it down to just a single cough that was really loud, really high pitched, and very painful to his chest.

And that cough was happening every few minutes. He wasn’t going to school. They would bring him homework at home, but they weren’t giving him a whole lot of help. And he was very affected emotionally. And I think that it was just that he was losing interaction at school. He wasn’t getting the interaction with friends.

He was just at home coughing and in pain, and no one could tell him what it was. All the doctors we were going to started talking about it being psychosomatic, and we were going, “Well, even if it is, that’s not helping us to stop it.” And they’re like, “Well, he has to want to stop it,” or something along those lines. And it just wasn’t helpful.

David Hirsch: How old would he have been at that time?

Jesse Hohn: He was born in 2000, so he would’ve been 11. The cough lasted from that January, and the last time he coughed was the day before Mother’s Day. So Felima, my wife, said that it was her Mother’s Day gift that he stopped coughing. But it was five months of coughing, and his chest hurt. For years after that he was having chest pains.

He had to stop playing soccer because it was too painful for running around. We saw some asthma specialists about some of that, and so that was kind of the beginning of it. And then right around his birthday of that year, in September, the week leading up to his birthday, he was having migraines.

And the migraines were happening at the same time every day. And it was very odd. His school happened to be right across from my work. I would pick him up from school and bring him across to my work, and then I would find a dark room and just put him in there. That was a little odd, but it was three or four days in a row.

And then his birthday came over a weekend, and we had a paintball game planned with a bunch of friends. We went to that, and it was a lot of fun. And I’m trying to think. I think Toby might’ve been at that. But anyway, we got to the end of it, and I was driving his friends home, and the migraine started up right on schedule. And we decided that that was enough.

So we took him to the ER. And at the ER we told him that he had been having these migraines every day. They treated him for a migraine, which was to give him fluids. They gave him a little bit of a sedative so he could sleep through it. And then they turned the lights off, and left him in a dark room for a while, and that was perfectly fine. That’s the way it’s supposed to go.

When he woke up, he had developed 104 degree fever, and when we got in there, it was normal. His temp was normal. After everything that had happened with the cough and the asthma, the  specialists and everything we were going through, like I said, we had kept in the back of our head about how half of the blood draws that came back abnormal.

So we had decided that it was time to start doing regular blood draws for him. And we had the doctors give us a standing order at the lab so that we could do that. And so this was the first time since we had decided we would start doing that again, that a fever had developed.

And so we decided we would go with the typical protocol for fever, which with neutropenia, there’s a protocol you follow. If it’s over 100.4, 100.5, then you do a CBC, a blood culture. If the CBC comes back as being neutropenic, then you give a broad spectrum antibiotic.

So we decided, let’s go forward with that plan. And so we had them take a CBC and a blood culture. They came bank and showed me the CBC, and I don’t think he was neutropenic. I don’t recall if he was neutropenic. I think his ANC actually may have been significantly elevated, which was showing that it was actually fighting something.

But when they showed that to me, I noticed that they had my pediatrician’s name wrong. He had the same last name, but the wrong first name. And I said, “That’s not our doctor. Our doctor’s this other doctor.’ And they’re like, “Oh yeah, I’ll go correct that.”

They’re saying, we’re not seeing anything wrong as far as the CBC, so we’re just going to send you guys home. And they sent us home with 104 degree fever that developed while we were in the ER. So we went home.

And our pediatrician is an amazing doctor, and he has been since the beginning. We lucked out with the pediatrician we got. He was at the hospital the next day doing his typical rounds, and he opened up their computer system and looked in there, and he recognized our last name, because our two girls were in there all the time.

So he knew us very well, and he saw our last name, and he is like, “Well, I didn’t know they were at the ER. Oh, it’s Ethan. Okay, well what’s this a blood culture that came back positive?” And he looked at it, and he is like, “Well, no, that can’t be right. That doesn’t happen. That’s a contaminant in the blood culture. We need to redraw the blood culture.”

And so he called us up. And he said, “I was looking. They didn’t notify me.” He found that they still kept it under the wrong name, the wrong pediatrician name. That’s why he didn’t know about it. And so he corrected that. I imagine that happens a lot to him because it’s the same last name. And he corrected that.

And then he called us up and told us, “You need to come in today to repeat this blood culture.” And he asked us, “What’s going on?” So we went in, repeated the blood culture, and it came back exactly the same. And the result that it came back with took a day to grow. So we knew this the next day.

The result that it came back with was something called bacteremia. And bacteremia, as we understand it, is something that you do not see in kids over the age of one. It’s a very dangerous infection. And that alone was what decided it for him, that this is something that kids with normal immune systems don’t get. And he got it. And he decided that, okay, whatever our two girls have, he has it too. And so he was the last to be diagnosed with that.

It was also the final straw for our pediatrician. And he does not send anyone to that ER ever again, because it could have been deadly if he hadn’t caught them sending it to the wrong doctor. Them sending a patient home that developed a fever while in the ER—he should have been admitted to the hospital and monitored. It was a very dangerous thing, and he let them know that, and he doesn’t send any of his patients there anymore.

David Hirsch: Yeah. Well, thanks for sharing What a harrowing story. And thanks for going into some detail, explaining that Ariana was the first, and then Sadie, and then Ethan, sort of out of birth order. What a journey that you and Felima have been on. And Toby, I’m wondering what your experience has been as far as the diagnosis for Kavan.

Toby Brown: So with Kavan, Shwachman-Diamond syndrome is not the only issue that he has. He was born with birth defects and ended up in surgery at 24 hours old. So he had specialists and a very aware pediatrician from the beginning. Shwachman-Diamond did not start to enter the picture until he was about one, when he fell off his growth curve.

So basically he had been tracking at his percentile, which was a low percentile. But at about one it flattened out, which it’s not supposed to do. And so the pediatrician decided to start investigating that. And we did a whole lot of testing. I think we did the cystic fibrosis test three times, which is not a fun test to have to do once.

But we did that multiple times, and eventually we saw specialists—a hematologist and GI—and I think it was the hematologist who said, “This looks an awful lot like Shwachman-Diamond syndrome.” And so because of the neutropenia, Kavan also has the pancreatic insufficiency, which was the GI factor. And so between those two doctors talking to the pediatrician, he was clinically diagnosed.

And then, as Jesse had said, the genetic test was available. And so Kavan was able to do that test and was genetically confirmed. So he does not have the same uncertainty factor that Jesse’s kids have to deal with, which is—I don’t know, in some ways it’s neither here nor there, but in other ways it, it makes a huge difference. Like the short version is he fell off his growth curve, bunch of tests, Shwachman-Diamond.

David Hirsch: Okay. It sounds a little bit easier. Not easy as in easy peasy. But the time from some initial curiosity to the time of diagnosis was less circuitous than what Jesse described.

Toby Brown: Yeah, I think the diagnostic process for Kavan might have been six months, between when the doctor became concerned about him falling off the growth curve to the genetic confirmation or even the clinical diagnosis.

Because you take one test to eliminate something, and then you have to figure out what to test next. And so it was still several months of what’s going on. Not nearly as harrowing as Ethan’s story.

David Hirsch: Yeah. Well, thanks for mentioning it. I think what I heard you say was that it’s sort of like a process of elimination. You take one test, you either learn something or don’t learn something, and you have to pivot or go from there.

So I’m sort of curious to know if there was some meaningful advice, Toby, that you and your wife got early on after the diagnosis that helped with the situation and your perspective.

Toby Brown: I don’t recall anything earth shattering. I remember a lot of doubt, particularly from people outside of the family, or even grandparents on my wife’s side. Because Kavan appeared healthy. Shwachman-Diamond is not something that has an externally physical identifier. And so that was at times very frustrating, where we would tell people, “Kavan’s sick, he needs to have this happen.” And they would just be like, “Kavan’s a totally normal kid. What are you talking about?” So there was that conflict I guess that came up at times.

And so I think that one of the things that I learned later is that when your child is diagnosed with a rare condition, or really any kind of life changing condition, as the parent you kind of have to go through a grieving process for your kid not being the healthy kid that everybody just anticipates having. Because when you find out you’re pregnant, you’re just like, “Yay! A baby’s coming!” And you assume everything’s going to be sunshine and roses, without any thorns. And then you find out, “Oh, this kid’s got some really big thorns.”

And so there’s that process of getting to the point of accepting where you’re at and what that means for your life, as well as for your child’s life. And so I think that was one of the bigger things that I learned. But that didn’t happen anytime near diagnosis, unfortunately, but several years later.

David Hirsch: Well, it’s a process, and the way I’ve heard it described is that moms and dads don’t always arrive at the same time, because we all process things differently. And it sounds like there was some outside pressure, like you were saying, from either family members or people beyond, because they didn’t have all the information that you had, and they’re just making an observation, right? Like a physical observation, which obviously is very limited to what we can see. So thanks for being so authentic and transparent about that.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey, will receive a Great Dad coin. Thank you. Now back to the conversation between David Hirsch, Toby Brown and Jess Hohn.

David Hirsch: Toby, I’m wondering what impact Kavan’s situation has had on his younger sister Annabel, or your marriage for that matter.

Toby Brown: That is a great question. So I think that in terms of my marriage, I know that the additional stress and strain of having to deal with the medical stuff, the insurance and the doctors and the uncertainty of just keeping the kids safe in light of increased risk, can be very strenuous on a relationship, on a marriage.

Fortunately, Angela and I have been able to stay on the same page about things. I listen to her mommy intuition, and she listens to my daddy intuition, and together we have been able to face challenges and do it well. Like there was one doctor that we had who she could not communicate with. And so we learned very early on that I had to be there at those doctor’s appointments so that I could translate between the doctor and Angela, so that the good communication happened.

I think it’s one of those things that you kinda have to grow into and figure out, by open communication and just making sure that you’re on the same page and that you have the same understanding of things. Because a lot of the strenuousness comes from that difference in understanding, I think. And so I think it’s very important that both parents understand the special needs in the same way.

David Hirsch: Yeah. Well thanks for emphasizing that. It sounds like it at some level it has to do with communication.

Toby Brown: I think so. I think so.

David Hirsch: Open lines of communication, making sure that it’s not just the words, but there’s an understanding, and trying to be more diligent about that than maybe people would be otherwise, just because of all the things that are going on. And the time it takes to do that.

Toby Brown: Can I go back to Annabel for a minute?

David Hirsch: Oh, absolutely, please.

Toby Brown: All right. So you did ask about Annabel too, and Annabel as a sibling has grown a lot like. One of your earlier questions to me was about our exposure to special needs community, and Annabel’s been exposed since she was two, or even one.

David Hirsch: She doesn’t know any different, really.

Toby Brown: Yeah. She doesn’t know any different. And so her compassion I think has been heightened, her compassion and empathy. She’s a very compassionate child and a very compassionate young adult, very empathetic, to the point where it’s gotten her into trouble sometimes.

So I think that she’s very aware of just the diversity of things, because she’s had to defend Kavan or explain why Kavan’s different to some of her friends, or even to some of his friends. I think that it’s part of who she is and part of her personality.

David Hirsch: Well, thanks for sharing. It’s not uncommon, but younger siblings of those that have special needs have a different upbringing. Because, like you said, she doesn’t really know anything different, right? This is just her older brother, and this is who he is, and she’s just sort of lived with that from the get go.

And I’m thrilled to hear that it’s led to a more compassionate and empathetic experience. And sometimes that leads to like a different career altogether, just because of that life’s experience.

So I’m thinking about supporting organizations, and I’m wondering, Jesse, if there’s an organization or two that you can identify that’s made a difference, for your family, or for one or more of the kids for that matter, as it relates to SDS?

Jesse Brown: Absolutely. Let’s see. I think first of all would be Camp Sunshine. Camp Sunshine is this camp in, Maine that has themed weeks and weekends. I think they do some weekend programs. But they have themed weeks for families with kids with life-threatening issues.

The first time we went there was in the summer of 2007. The theme for that week was a hematology. And so we were one of three, maybe four families with SDS. And then there were some others there with, diamond blackfan anemia, some with fanconi anemia. I think about half of the families were there for sickle cell anemia. You stay on site, and they feed you. The hematology weeks are basically just a lot of relaxation, a lot of fun.

Also, something I discovered at Camp Sunshine was the parent groups, which was basically group therapy. They have a counselor there that’s a really good therapist and social worker. She does a great job running these sessions. It was there that I learned how important community is.

And I also learned that year that these families aren’t necessarily dealing with the same syndrome, but they go through such similar paths. They talk about how difficult it was to get a certain diagnosis. Or they talk about some of the struggles they have with getting in to see specialists, or things like that. So it sounded so familiar. For me, the parent sessions were actually the most valuable part of that first week we went.

David Hirsch: Yeah. Well, thanks for sharing with me, and it’s not lost on me that you mentioned Camp Sunshine is in Maine. As in like far northeast, right? Not like in your backyard there in Colorado. So I’m sort of curious to know how is it that Camp Sunshine even showed up on the radar screen, either for you or for Toby for that matter?

Jesse Hohn: I believe it was mentioned in the SDS email group, a listserv group that my wife was part of, and Angela was part of as well. And there were people from all over the country and some even international. There were more people on the East coast that knew about it, and they told us about it.

In 2008, we went back to Camp Sunshine again. And that week was actually specifically Shwachman-Diamond syndrome week. We flew into Portland, Maine’s, airport. And they came and picked us up in a van for Camp Sunshine. And they loaded our stuff on, and they said, “Oh, we’re going to go pick up your friends too.”

And they figured out that we knew Toby and Angela already, but we had never met them. They had flown in from Colorado Springs, I think on a different flight. But we landed at similar times, and that’s where we met Toby and Angela. It was right there. Despite the fact that Angela and I went to the same college for a year, a small college with only about a thousand students.

Toby Brown: You have to tell them how old Sadie was in 2008.

Jesse Hohn: Oh, yeah. She was a month old when we went there.

David Hirsch: Oh my gosh. So, Toby, can you corroborate that story?

Toby Brown: I can correct that story. So we heard about Camp Sunshine through the Shwachman-Diamond Syndrome Foundation, because they had been in a habit of having an annual conference, or an every other year conference, where families could get together. And that had been moving around the country.

But then the foundation heard about Camp Sunshine. And Camp Sunshine basically became the host or the location for the foundation’s conference. And 2008 was the first year that the foundation actually had their conference at Camp Sunshine. And so that’s how we heard about Camp Sunshine, through the foundation.

Which again, as Jesse was saying was, had a huge online presence and still does. And so there’s a Facebook group, and I think the email list has pretty much gone away with the advent of social media. But yeah, the Facebook group is very active, and so we heard about it that way.

And then our travel arrangements. I think we flew into Boston, and then took the train or the bus up to Portland. So we got picked up first by the Camp Sunshine Van, and then we went to pick up Jesse and Felima and their family. And so I was actually in the van with the volunteer who was driving us around. I saw this family of five with all these bags. And so I hopped out of the van and started helping the guy put the stuff in the van. And Jesse and Felima actually thought I was a volunteer.

Jesse Hohn: You had a yellow shirt on.

Toby Brown: I did. I was wearing a yellow shirt, and they all wore yellow shirts.

Jesse Hohn: Yeah, all the volunteers wear yellow shirts at Camp Sunshine.

David Hirsch: Yeah. Well, I love this story. Thank you for sharing. I’m still thinking about supporting organizations, and I’m wondering, Toby, if there’s any other organization or organizations that come to mind.

Toby Brown: So aside from the Shwachman-Diamond Syndrome Foundation and Camp Sunshine, two that have been important to Kavan have been Special Olympics and Team Impact. Both of those are things that he got a lot out of and enjoyed participating in. He still participates in Special Olympics. He does soccer and tennis primarily, and Angela gets involved with that and does some of the coaching or assistant coaching, depending on what season it is and who else is signed up for stuff.

But Kavan’s really enjoyed that, and it’s been good for him to be in that community where other people are dealing with things that are of medical complexity and just more aware of special needs. And then Team Impact is kind of the opposite of that, where they partner a special needs kid with a college athletic team.

So the impact comes from the one kid interacting with the one team. And so Kavan was able to be a part of the UCCS men’s basketball team for several seasons, and he really got into it. He wasn’t really a big basketball person before that, but being part of that team and around those guys, he totally just got really into the sport.

He actually did Team Impact before he did Special Olympics basketball, so having that team impact experience helped him to move into the basketball part of Special Olympics.

David Hirsch: Yeah. Well thanks for explaining. We’ll be sure to include all these organizations in the show notes. The Shwachman-Diamond Syndrome Foundation, Camp Sunshine, Special Olympics and Team Impact. Was there another one you’d like to include, Jesse?

Jesse Hohn: Yeah, there’s just one more. Just really quick, I wanted to also say Make-A-Wish was also very, very impactful for my family. They gave all three of my kids a wish. Each had their own wish, and they gave them to them all over one summer, in 2017. So it was just a great summer.

David Hirsch: Okay. What were the wishes, just so we know?

Jesse Hohn: I started with Sadie, and her wish was to bake with Duff Goldman. He was great. He invited her to his house, and she cooked some cookies in his kitchen.

And then, let’s see. Ariana wanted to swim with the dolphins in Hawaii. And so we went down to Hawaii and we swam with dolphins at Sea Life Park. And then Ethan wanted to see Hamilton on Broadway. And so we went to New York and saw Hamilton.

David Hirsch: Wow. 2017 must have been a special year. A year to remember.

Jesse Hohn: And Kavan also.

Toby Brown: Yep. That was also the year that Kavan’s wish was granted. He had wished to meet the people that make his favorite video games, which at the time were Angry Birds and Boom Beach made by Rovio and Supercell, which are both based in Finland. And so Kavan got a trip to Finland. So we spent a week in Finland, and he got to spend a day at each of the companies interacting with the game developers.

David Hirsch: Wow. That is amazing. So thanks for sharing. We’ll definitely include make-A-Wish in the show notes, because everybody’s situation’s a little bit different. That sounds exciting to be able to travel, not just the individual and a chaperone, but it’s like a family experience, right?

So I’m thinking about advice now, and Jesse, I’ll let you go first. Is there any advice that you can offer a dad who maybe is close to the beginning of his journey raising a child or multiple children like yourself with special needs?

Jesse Hohn: I think the biggest thing I tell anyone that gets into a situation similar to this is community is huge. Find a community of people dealing with the same issue. There are a lot of families out there that are dealing with SDS that you can talk to.

But even if you can’t find someone with the same syndrome, people going through similar circumstances are very important in helping you to kind of cope with the situation, so you understand that you’re not really alone going through this. This isn’t just you, and just your family, just your kid or even the experiences that the parents go through. Dealing with insurance for instance, it can be a huge headache, and you get those insurance headaches with any medical issue, not just SDS.

David Hirsch: Yeah, they’re very liberal about distributing those insurance headaches to everybody. You don’t even have to have a child with special needs.

Jesse Hohn: Yeah, exactly. So I mean, you get that, and then having to deal with specialists’ schedules. You go through a lot of the same issues, even if it’s not the same syndrome. And so find a community is the first thing that I tell people to do. There’s a lot of value in it, and you really don’t see the value until you are there and you experience it.

The other thing I found, and this is especially for families with kids with rare issues like this, you have to be an advocate for your kid. You have to understand the medical issues. We’ve been to the ER so many times, and we tell the doctor, whichever kid we’re with at the ER, “She has SDS.” And they say, “What’s that?” “Shwachman-Diamond syndrome.” “Well, what does that entail?” “It’s neutropenia and pancreatic insufficient.”

“Well, what does that mean? I mean, what does that mean for this visit?” “Okay, so you’re going to need to take a CBC blood culture. If the CBC comes back below here, then you’re going to have to give a broad spectrum antibiotic, because she’s so susceptible to sepsis that we have to hit as much possibility as we can here.”

And so you really have to stand up, and not just accept what the doctors tell you necessarily. I mean, with the story with Ethan, when they sent us home with 104 degree temp that developed while we were there, I should have stood up and said, “No, this happened while we were here. And 104 is a high temp. We can’t go home with this. We have to figure this out, and monitor him.” Anyway, you have to learn from things like that and be heard.

David Hirsch: Well, the two things I heard you say were to find a community, and then to be an advocate, and you inadvertently also emphasize the importance of patience. If you have to explain something to the medical professionals about your child, it seems counterintuitive, but let’s face the facts. Some of this stuff is really specialized, and why would everybody who went through medical school know all these things?

So I think that having grace or patience, along with the fact that you know more about your child than anybody else, and then making sure that your on top of that, regardless of what the circumstances or the words you’re hearing. That’s what I heard you say.

And Toby, I’m wondering if there’s any advice that you can suggest up and above emphasizing what Jesse did about finding a community and being an advocate.

Toby Brown: Yep. I agree with both of you, about your points. I would say that one of the things that was important for me was doing my best to treat Kavan like a normal kid. I think that so much focus gets put on the special need, that the normal needs are kind of overshadowed.

And so it’s important to get the kid involved in youth soccer, and put them out there for things that a normal kid would do. Kavan started out in rec league, and when that got too competitive and people started being not nice, we moved him over to Special Olympics.

But I think that it was important for Kavan to be on that rec league first, and I think he had a great time in rec league prior to the competitiveness of it. But even then, he was still excited to go. He just didn’t enjoy it as much as he used to. So I would say that in addition to the community and the other stuff, just let them be a kid, and try to fit in as much normal kid stuff as you can amidst all of the doctor visits and medications and all of it.

David Hirsch: Well, thank you for making the point. The way I’ve heard it phrased is you want your kids to have as typical an experience as possible and not have the diagnosis be what is driving all their waking moments and all their experiences. So a really good point as well.

Let’s give a special shout out to your parents, Jesse, Arlene and Roy, who I met on an Egyptian cruise in the fall of 2021, for helping connect us. It’s not the first time that I’ve met somebody on vacation who says, “Oh, I have some experience with special needs.”

And obviously this was their career, right? They were career special educators. And it wasn’t until after the trip that we were communicating, and I sent some information on the Special Fathers Network, that he said, “Oh, we actually have some grandchildren with special needs.” I’m like, “Oh, that would be great. I’m looking to interview more grandfathers. Roy, I’d like to interview you.”

He goes, No, I’m the wrong person. You really need to interview Jesse. Overlook his close friend Toby. So, Roy and Arlene, thank you for, helping make this podcast possible.

Jesse Hohn: And Roy, if you’re listening, you should totally do an interview.

David Hirsch: Thanks for the plug. So if somebody wants to learn about Shwachman-Diamond syndrome or contact either of you, what’s the best way to do that?

Toby Brown: I’m going to say email.

Jesse Hohn: Yeah, yeah, email is probably the best way to contact me.

David Hirsch: Okay. I’ll be sure to include both your emails in the show notes, as well as information on the Shwachman-Diamond Syndrome Foundation. As well as the Camp Sunshine, which obviously has played a really meaningful role in each of your lives, as well as Make-A-Wish, and then Team Impact as well.

So Toby and Jesse, thank you for taking the time and many insights. As a reminder, Toby and Jesse are two dads who are part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.

Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501(c)3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a textbook with donation? I would really appreciate your support.

Toby and Jess, thanks again.

Toby Brown: You’re welcome. Thank you.

Jesse Hohn: Thank you.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help, or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to david@21stcenturydads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Horizon Therapeutics, who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.