Episode 2
My Story: Steve Smelski
Hope Thru Grief features co-hosts Marshall Adler & Steve Smelski discussing their journeys of grief, after losing their sons and other family members. They have changed their focus in life since their son’s deaths and have been helping others to find the support and answers they have been searching for.
Steve and his wife, Shelly, had an ideal life with successful careers and an 11-year old son, Jordan. A day after returning from a summer vacation spent splashing in hot springs and ziplining in Costa Rica, Jordan became ill with a severe headache. Within a few days, Jordan passed away from what the doctors discovered was a brain eating amoeba that he had contracted while on vacation. There are no words to describe parents that have lost their child and Steve and Shelly’s grief seemed insurmountable- at times even forgetting to eat. The Smelski’s have dedicated their lives to fighting the brain eating amoeba and started the Jordan Smelski Foundation in their son’s honor. They hold an annual Amoeba Summit in Orlando, FL and create training courses for doctors and lab technicians which have been instrumental in saving at least 3 children with confirmed PAM cases, so far.
Find out how Steve and Shelly have found hope and the strength to fight the very disease that took Jordan from them far too soon.
We welcome your comments and questions! Send an email to hopethrugrief@gmail.com and please share our show with anyone you know that is struggling with loss and grief. You can find us on the internet to continue the conversation!
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Jordan Smelski Foundation: http://www.jordansmelskifoundation.org
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Marshall Adler and Steve Smelski, co-hosts of Hope Thru Grief are not medical, or mental health professionals, therefore we cannot and will not give any medical, or mental health advice. If you, or anyone you know needs medical or mental health treatment, please contact a medical or mental health professional immediately.
Thank you
Marshall Adler
Steve Smelski
Transcript
My name is Steve Smelski welcome today to hope through grief.
Steve Smelski:Thank you for joining us today.
Steve Smelski:We're going to go into Jordan's and mine and my wife.
Steve Smelski:Shelley's story a little bit and talk about some of the background.
Steve Smelski:In the meantime, I'd like to introduce you to cohost Marshall Adler.
Marshall Adler:Thank you so much, Steve.
Marshall Adler:I'm glad that, uh, we are going to get an opportunity today to have you tell
Marshall Adler:us about your journey with the loss of Jordan and your wonderful wife Shelley.
Marshall Adler:So what I'd like to do is if you could please tell us about Jordan, I think
Marshall Adler:that'd be the best place to start.
Steve Smelski:Okay.
Steve Smelski:Jordan is Shelly's and mine only child.
Steve Smelski:He passed away when he was 11 and a half.
Steve Smelski:He had graduated fifth grade was getting ready to go into middle school.
Steve Smelski:After some of vacation, Jordan was a 100%, 100 mile an hour boy from
Steve Smelski:the moment he woke up to the moment he fell asleep, he was all go.
Steve Smelski:He was all in on everything he did.
Steve Smelski:Jordan liked to go first.
Steve Smelski:He always liked to win.
Steve Smelski:He was actually very talented, uh, artistically, he, his paintings
Steve Smelski:and colorings were very vivid.
Steve Smelski:Uh, he was actually a very good writer.
Steve Smelski:We didn't realize how good until we went back and read some of the things
Steve Smelski:that he had written, uh, after his passing, he was pretty good in school.
Steve Smelski:I think he got the good grades for us, for him.
Steve Smelski:He could take it or leave it.
Steve Smelski:But, um, he knew that made us proud of him.
Steve Smelski:So he tried really hard on the grade side.
Steve Smelski:Sports-wise he was, he was pretty athletic.
Steve Smelski:He played soccer for seven or eight years.
Steve Smelski:He played baseball for a couple of years.
Steve Smelski:Um, he also played some flag football.
Steve Smelski:Um, Besides being a hundred miles an hour, an all boy, Jordan really
Steve Smelski:wasn't scared of much outside of maybe spiders and snakes and alligators.
Steve Smelski:He, um, he was the catcher on the baseball team because he was the
Steve Smelski:only one in the team that wasn't afraid to get hit by the ball.
Steve Smelski:On the soccer team, he was the goalie because he would lay right out.
Steve Smelski:He'd take one off his head to keep it from going in the goal.
Steve Smelski:He just, he had no fear, which as a parent, it scared us many, many times.
Steve Smelski:He loved to swim.
Steve Smelski:He learned to swim before he was two.
Steve Smelski:Uh, he started taking swimming lessons about a year and a half.
Steve Smelski:And within six months he was off on his own with no floaters in the pool.
Steve Smelski:We were a little concerned with all the drownings in Florida and want
Steve Smelski:to make sure he knew how to swim.
Steve Smelski:He loved swimming.
Steve Smelski:We, uh, we lived on a lake and we wanted to make sure that he
Steve Smelski:was able to swim if he needed to.
Steve Smelski:But we also asked him not to go in to the water.
Steve Smelski:He loved his friends.
Steve Smelski:He loved playing games with them.
Steve Smelski:He'd laugh and talk with them all the time.
Steve Smelski:He was always trying to tell a joke to make you laugh.
Steve Smelski:Uh, sometimes he'd say it too many times and we'd have to say,
Steve Smelski:okay, Jordan, that is not funny.
Steve Smelski:You're going to forget a different joke, but he, um, He loved
Steve Smelski:going on vacations with us.
Steve Smelski:He loved hanging out with us.
Steve Smelski:We went and he was actually very well-traveled.
Steve Smelski:We, uh, call ourselves the three Amigos.
Steve Smelski:And when we took off and we traveled to a different country and, um, he
Steve Smelski:was very passionate about his video games and playing with his friends
Steve Smelski:and spending time with his cousins.
Steve Smelski:And he, uh, he always had a good time and you'd hear the kids laughing.
Steve Smelski:And Jordan was in the middle of, because he's trying to make everybody
Steve Smelski:laugh, but, um, he was all boy and he was all ours and, um, he could be a
Steve Smelski:challenge, but, um, Shelly and I were both in sales and Jordan would try to
Steve Smelski:sell you on all his ideas and wishes.
Steve Smelski:His fifth grade teacher, Ms.
Steve Smelski:Charlton told Jordan he should go into sales because he'd be a good one.
Steve Smelski:He'd always have an angle on something he'd always try and talk
Steve Smelski:you into doing something his way.
Steve Smelski:But, um, actually we really miss him.
Marshall Adler:What happened on your vacation in June, 2014?
Steve Smelski:That was the summer after he graduated fifth
Steve Smelski:grade from Wilson elementary.
Steve Smelski:And we were trying to determine where to go.
Steve Smelski:We usually took one very nice vacation over the summer when he was off from
Steve Smelski:school and we had a couple of things fall through and we asked him if he wanted
Steve Smelski:to go back to Costa Rica, because we had been there in 2011 when he was eight.
Steve Smelski:And he said, yes, he loved, uh, riding the horses.
Steve Smelski:He loved holding the Toucans.
Steve Smelski:So he was all in.
Steve Smelski:So we scheduled a vacation, ended up staying at the same resorts
Steve Smelski:that we did the first time.
Steve Smelski:And didn't really give it a thought.
Steve Smelski:We weren't really concerned.
Steve Smelski:First time we checked into everything, we were really concerned.
Steve Smelski:First time we'd ever been there and we had such a great trip
Steve Smelski:and the people were so friendly.
Steve Smelski:We weren't really concerned when we left and went down in 2014, we ended up staying
Steve Smelski:now where there nine days, eight nights, and we stayed at two different resorts.
Steve Smelski:We did a lot of different things.
Steve Smelski:We did a lot of hiking.
Steve Smelski:We did horseback riding, but we only swam one day.
Steve Smelski:And Jordan and I spent the afternoon in the pool for six or seven
Steve Smelski:hours going down a water slide.
Steve Smelski:And the resort was near a volcano and it had hot spring water
Steve Smelski:and probably half of the pools.
Steve Smelski:Well, the pool with a water slide was filled the hot spring water.
Steve Smelski:So it was like 96 degrees.
Steve Smelski:And he, I spent the whole afternoon, he, he wore me out and five or six other
Steve Smelski:people, he just kept going down the slide, but you couldn't go down the slide
Steve Smelski:without having all the water splash up in your face and go up your nose.
Steve Smelski:And he and I had a great day.
Steve Smelski:In fact, as a father and son, I might've been one of the
Steve Smelski:best days we ever had together.
Steve Smelski:It was just he and I in the pool for the whole afternoon.
Steve Smelski:And, um, I think we got there at noon and we left the little
Steve Smelski:bit after six, went back, took a shower and met Shelly at the room.
Steve Smelski:And we, we went out to dinner at their five star restaurant there at the resort.
Steve Smelski:And, um, he ended up having a headache the next day, but we left
Steve Smelski:that resort one in the San Jose.
Steve Smelski:It didn't feel as good the next day.
Steve Smelski:And we flew back on Friday.
Steve Smelski:So we swam on Tuesday and flew back to Orlando on Friday.
Marshall Adler:What happened after you got back to Orlando?
Steve Smelski:We flew into Orlando.
Steve Smelski:I think we, we spent three hours in customs because there was a thunder and
Steve Smelski:lightening storm right after we landed and they couldn't unload the luggage.
Steve Smelski:So we waited an awful long time and he kept complaining about a headache.
Steve Smelski:Uh, hadn't gone away since we swam.
Steve Smelski:And I thought maybe he twisted his neck or pinched a nerve in
Steve Smelski:his back from going down the slide with all the stunts he was doing.
Steve Smelski:We ended up picking up, take out.
Steve Smelski:Um, he woke up the next morning.
Steve Smelski:He seemed a little better.
Steve Smelski:He ended up playing his games all morning.
Steve Smelski:He asked us if he could have his best friend Jaden over to play games with them.
Steve Smelski:And we said, ah, you're not feeling that good.
Steve Smelski:We just got back.
Steve Smelski:We'd been out of the country.
Steve Smelski:It's a good day to rest up.
Steve Smelski:You'll have a chance to play with him all summer long.
Steve Smelski:So.
Steve Smelski:He, um, play it up until about noon and by one o'clock he was laying
Steve Smelski:on his bed and complaining that his, his neck was getting stiff.
Steve Smelski:He still had a headache and you just didn't feel good.
Steve Smelski:As soon as he said, he didn't want to play games.
Steve Smelski:We knew something was up because if he had a chance to play,
Steve Smelski:he'd just sit there and play.
Steve Smelski:We ended up having dinner that night, watched a movie, Shelley put him to bed.
Steve Smelski:And about 1130 Saturday night, he, he started vomiting and
Steve Smelski:he was up all night long.
Steve Smelski:And Shelly woke me up part way through the night I got up and saved
Steve Smelski:rather than the rest of the morning.
Steve Smelski:And she goes, I'm concerned.
Steve Smelski:He's you just getting sick?
Steve Smelski:And he can't stop.
Steve Smelski:And we said, if he's like that in the morning, we'll take them
Steve Smelski:to the emergency room, especially since we've been out of country.
Steve Smelski:So she came in to check in the morning and he was still vomiting.
Steve Smelski:He'd been up like every 20 or 30 minutes.
Steve Smelski:And, uh, neither one of us got much sleep.
Steve Smelski:We got ready and took him to the emergency room.
Steve Smelski:Um, talk to the doctor.
Steve Smelski:We told him we'd been out of country.
Steve Smelski:And, uh, he asked, you know, where you around farms are around animals.
Steve Smelski:And we said, yeah, we've been around all of that.
Steve Smelski:We'd gone horseback riding.
Steve Smelski:We'd also gone swimming at the pool and he'd had the
Steve Smelski:headache after we were swimming.
Steve Smelski:So they said, well, the stiff neck leads us to think that it's probably meningitis.
Steve Smelski:So we'd like to do a CT scan.
Steve Smelski:And the only way we'll know for sure is do a lumbar puncture and check
Steve Smelski:the CSF fluid from the spinal column.
Steve Smelski:So gave him the okay to do both.
Steve Smelski:Both of them came back good to CSF fluid was clear.
Steve Smelski:His CT scan came back fine.
Steve Smelski:There was no issues.
Steve Smelski:And, um, they said, we're going to transfer him down to the
Steve Smelski:children's hospital and we'll go ahead and admit him down there.
Steve Smelski:So they transferred him via ambulance and put them in a regular room.
Steve Smelski:He had a tough night.
Steve Smelski:He doesn't feel that good, uh, the next day, other than not being able to keep
Steve Smelski:anything down, they had him on medication.
Steve Smelski:So he wasn't, wasn't getting sick anymore, but they wouldn't let
Steve Smelski:him have any fluids or any food.
Steve Smelski:He really wanted to have a drink, of a Coke.
Steve Smelski:And they were like, no, you can't drink anything.
Steve Smelski:But he and I, how we, I laid on his bed.
Steve Smelski:And we talked about the vacation, different things that we're going
Steve Smelski:to do for the summer, maybe where the next vacation was going to be.
Steve Smelski:And it seemed like he was going to be just fine when they checked him in, they
Steve Smelski:said it's viral meningitis and you'll take them home in three to five days.
Steve Smelski:And by the next day it was like, yeah.
Steve Smelski:Okay.
Steve Smelski:This is awesome.
Steve Smelski:We'll be here for a couple of days and we'll go home.
Steve Smelski:Well, Monday night he started hallucinating and Shelly and I laid on
Steve Smelski:his bed on top of him because after the first half hour, he was seeing things
Steve Smelski:on the ceiling, seeing things on the bed, and then his body started shaking.
Steve Smelski:He couldn't keep his arms or his legs still.
Steve Smelski:And they had a couple of IVs and.
Steve Smelski:And so we ended up laying on top of him for three to three and a half hours.
Steve Smelski:Cause we couldn't get the nurse to bring a doctor in and his pupil's dilated.
Steve Smelski:It was just like you go to the eye doctor and have a test, huge pupils.
Steve Smelski:and he was looking really weird and he was saying things that didn't make sense.
Steve Smelski:And then as the three and a half hours went on, he said less and less.
Steve Smelski:And at the end he was just shaking uncontrollably on the
Steve Smelski:bed with us on top of him.
Steve Smelski:And he didn't know who we were he didn't recognize us.
Steve Smelski:He didn't know where he was.
Steve Smelski:So they finally brought the ICU team in and just as they came in the door, he
Steve Smelski:had a seizure and he rolled over on his side and they wheeled him down to ICU.
Steve Smelski:They got him stable and they said, okay, we've got them stable.
Steve Smelski:He's going to be okay.
Steve Smelski:It's going to be two to three weeks.
Steve Smelski:And then the next night it got even worse.
Steve Smelski:They were worried about the swelling in the cranium.
Steve Smelski:And they were worried the brain who pushed down on the brainstem,
Steve Smelski:which would kill Jordan.
Steve Smelski:So we gave him approval to have a neurosurgeon drill, a little hole
Steve Smelski:in the top of his skull for a drain.
Steve Smelski:And in that CSF sample, they saw the movement of the amoeba
Steve Smelski:and they reached out to the CDC.
Steve Smelski:They had a special drug that they've been using in the last few cases.
Steve Smelski:And they put it on a flight to Orlando.
Steve Smelski:Jordan didn't make it until the drug got there.
Steve Smelski:He passed away at 6:35, Wednesday morning, seven and a half days after we swim.
Steve Smelski:And, um, I think the flight from the CDC from Atlanta arrived about
Steve Smelski:eight and he passed away at 6:35 AM.
Marshall Adler:How did you deal with your grief, seeing your son.
Marshall Adler:Go through this.
Marshall Adler:Like, I I'll just interject that when Matt passed away, he was 3000
Marshall Adler:miles away and we got a call from the medical examiner, which was something
Marshall Adler:I'll never forget, which was its own horrible way to learn about the passing.
Marshall Adler:But you were there watching this happen.
Marshall Adler:I mean, how did you deal with your grief after this?
Steve Smelski:The morning, he passed away.
Steve Smelski:They had told us to try and get some sleep.
Steve Smelski:Cause we'd been up straight for pretty much three days and they woke us up early.
Steve Smelski:I think we've got an hour, hour and a half sleep.
Steve Smelski:And they said, look, we can't keep his vitals high enough to
Steve Smelski:save him until the drug gets here.
Steve Smelski:We need you to make a decision whether you want us to manually
Steve Smelski:resuscitate him until the drug routes.
Steve Smelski:And we hadn't had much sleep and they're asking us to make that decision.
Steve Smelski:And so Shelly called her a couple of her family members.
Steve Smelski:I call my parents, my mom was a nurse and labor and delivery.
Steve Smelski:And, um, she said, Steven, we, we can't tell you what to do with that decision.
Steve Smelski:You guys have to make that.
Steve Smelski:And Shelly got the same answer.
Steve Smelski:So we asked the doctor, if it was your son, would you do it?
Steve Smelski:And he said, no.
Steve Smelski:During the process of the last 24 hours, Jordan's left lung had
Steve Smelski:collapsed because of the intubation that it was, uh, as an adult.
Steve Smelski:Intubate Bayshore machine.
Steve Smelski:And it was too much pressure and it collapsed his left lung.
Steve Smelski:So we knew we were going to have some lung issues and pneumonia issues
Steve Smelski:and the thought of them pressing on his chest until the drug got here.
Steve Smelski:We just, we said, no.
Steve Smelski:So we called our family members and said, you need to come right away.
Steve Smelski:And within 30 minutes we had eight of our family members and friends there.
Steve Smelski:And.
Steve Smelski:I was on Jordan's left side right side with his right hand show is on his left.
Steve Smelski:And she asked everybody in the room.
Steve Smelski:Does anybody disagree with the decision we're making to let them go?
Steve Smelski:If, if you disagree, please say so right now.
Steve Smelski:And nobody said a word.
Steve Smelski:So they took him off of the respirator and we waited maybe two minutes and he
Steve Smelski:stopped breathing and I checked his heart and he was gone and we held his hands
Steve Smelski:for a few minutes and gave him a hug and we let everybody else have a turn.
Steve Smelski:And, uh, within 20 minutes we were ready to go out of the room.
Steve Smelski:We didn't want to be there.
Steve Smelski:So we went next door, got our things and we left by the time the doctor
Steve Smelski:came back, I guess we looked around and you guys were already gone.
Steve Smelski:We're like, we just couldn't stay there.
Steve Smelski:So we went home, we had a bunch of people at the house.
Steve Smelski:And even though your mind saw it, your heart won't let it be true.
Steve Smelski:We, um, we were in shock for the funeral service actually were probably
Steve Smelski:about 10 days, but we did a second service in New York and we would just
Steve Smelski:come out of shock and it was awful.
Steve Smelski:We, we thought we'd made a mistake flying up.
Steve Smelski:We didn't want to be around people.
Steve Smelski:We didn't want to go out of the house.
Steve Smelski:We didn't, um, we didn't want to do much at all.
Steve Smelski:We just couldn't believe he was gone.
Steve Smelski:And it just, it just seems so surreal that we had just been through that week after
Steve Smelski:the best vacation we'd ever had together.
Steve Smelski:And it happens so quick.
Steve Smelski:You don't really have time to let it sink in.
Steve Smelski:We didn't know he wasn't gonna make it until they woke us
Steve Smelski:up in the morning he died.
Steve Smelski:Cause we were still thinking the drug was going to save him.
Steve Smelski:The CEO of our company called us that night in ICU and offered up his plane
Steve Smelski:to fly in any drug or any doctor that we needed and reached out to
Steve Smelski:Stanford University to get a doctor from there and touch with our doctor.
Steve Smelski:And as it turned out, nothing would have changed the outcome, the, um,
Steve Smelski:the initial diagnosis, um, based on what Jordan died from is fatal.
Steve Smelski:They don't have time to go back and make a change until things don't make sense.
Steve Smelski:It's too late.
Steve Smelski:There's no way to save the patient.
Steve Smelski:So we had family stay with us for a couple of weeks.
Steve Smelski:And then all of a sudden, you wake up one day and they're gone and you're in the
Steve Smelski:house and it's so quiet without Jordan.
Steve Smelski:And you're thinking that I can't stay here.
Steve Smelski:This is horrible.
Steve Smelski:And yet you don't want to go outside.
Steve Smelski:You don't want people to talk to you.
Steve Smelski:You don't want them to run into you.
Steve Smelski:We had a lot of phone calls and a lot of text messages.
Steve Smelski:Sometimes it was four or five days before it could call him back.
Steve Smelski:It was, I guess we were in denial for a while because it seemed
Steve Smelski:like the first four or five months that we were at the house.
Steve Smelski:Every time the front doorbell rang, we thought it was Jordan and
Steve Smelski:we'd run to the door and then you go, that's not going to happen.
Steve Smelski:He's gone.
Steve Smelski:So we, um, decided that we need to get some help.
Steve Smelski:And we went to see a counselor for almost four months.
Steve Smelski:And we didn't feel like we were getting any better.
Steve Smelski:We ended up meeting one of the pastors from one of the nearby churches and he
Steve Smelski:told us about a grief program, his church.
Steve Smelski:And we signed up because we knew were in trouble and we weren't right away.
Steve Smelski:We came in, in the middle of the program and from the videos
Steve Smelski:and stuff, it seemed to help.
Steve Smelski:So we signed back up when they started up after the first of the year.
Steve Smelski:And we were still struggling.
Steve Smelski:I mean, every day was a struggle and it seemed like for the first two weeks,
Steve Smelski:Shelly and I were on the same page when she was having a bad time, I knew it.
Steve Smelski:I would go to her and same with, I was having a bad moment.
Steve Smelski:She come after the first two weeks, it was completely different.
Steve Smelski:We had no idea that men and women grieve differently.
Steve Smelski:We had no idea that everybody has a different journey of grief.
Steve Smelski:And at first we're like, okay, what's wrong with us?
Steve Smelski:Why are, why aren't we feeling the same thing?
Steve Smelski:So we started through the program and we, um, made some progress.
Steve Smelski:So we signed up for a third time and it felt better and better, but we
Steve Smelski:still had a hard time accepting it.
Steve Smelski:So we went to sign up for a fourth time and they said, well, You can sign
Steve Smelski:up, but you're going to have to help.
Steve Smelski:So I guess they thought we were better and we were like, we can't help anybody.
Steve Smelski:And they're like, we think he can.
Marshall Adler:What made you decide to help others?
Marshall Adler:Because I will tell you that you were so instrumental in helping us through
Marshall Adler:our grief process and I mentioned before to this many times to many
Marshall Adler:people publicly that you have been a shining example for me and Debbie, how
Marshall Adler:to survive the loss of a child and how to lead a productive, meaningful life.
Marshall Adler:So I'm really interested in the thought process that you came through
Marshall Adler:to make you decide that you wanted to help others after this tragedy?
Steve Smelski:I think by signing up to go through the grief program
Steve Smelski:early, no, it was two and a half to three months after Jordan's passing.
Steve Smelski:I think that was a help because we realized for the first time, since he was
Steve Smelski:gone, that maybe there was hope for us.
Steve Smelski:We could see maybe a light down the road, somewhere that
Steve Smelski:we could pull things together.
Steve Smelski:Your brain is mush and it is so difficult to concentrate on anything.
Steve Smelski:Our attention span was two minutes.
Steve Smelski:I wish I had a dollar for every time I lost my car keys.
Steve Smelski:It was that bad.
Steve Smelski:I mean, sometimes I'd find the car keys in the freezer.
Steve Smelski:I'd find them in the garage on top of a garbage can, just crazy thing.
Steve Smelski:And I think once you start to feel a little bit better, it's like, you're
Steve Smelski:you gravitate to it because anything is better than where you were at.
Steve Smelski:And you're not even 5% of what you used to be and any chance that you
Steve Smelski:might get back to what you were before, that's very attractive.
Steve Smelski:So you gravitate towards it.
Steve Smelski:Right after Jordan died, my sister-in-law was here and she found a couple family
Steve Smelski:sites on the web for amoeba awareness.
Steve Smelski:Jordan died from Naegleria Fowleri, which the press calls the brain
Steve Smelski:eating amoeba, which is pretty much exactly what it does when Jordan died.
Steve Smelski:It was 99% fatal, which means if your kid gets it, they're going to die.
Steve Smelski:There's pretty much, no chances only been a handful of survivors.
Steve Smelski:And about two months into our grief.
Steve Smelski:Before we started the program, we realized that we didn't want
Steve Smelski:anybody else to go through this.
Steve Smelski:And we thought all these families have these websites, but we'd
Steve Smelski:never heard of it before.
Steve Smelski:We'd never seen the websites before.
Steve Smelski:And it's like, maybe we could do it.
Steve Smelski:We had no idea how to start a, not for profit and.
Steve Smelski:Some of our closest friends and family members helped us pull it off and we
Steve Smelski:set it up and we asked the, I think we had four of our closest friends
Steve Smelski:that we thought could be influential on the board to be board members.
Steve Smelski:And they said, yeah, she, when we started, it took us four or five months to meet
Steve Smelski:with the different hospital systems.
Steve Smelski:We basically did a David Letterman top 10 list.
Steve Smelski:And we said, this is what happened to Jordan.
Steve Smelski:We think every one of these assets has to change.
Steve Smelski:And if we don't change it, the next patient's going to die too.
Steve Smelski:We found out Jordan wasn't the first case.
Steve Smelski:He was the fourth.
Steve Smelski:Okay.
Steve Smelski:So if you do nothing, outcome's going to be the same.
Steve Smelski:Well, we met with Dr.
Steve Smelski:Rajan Wadhawan and he was fairly new as the chief medical officer
Steve Smelski:and he agreed to meet with us and we made a few requests and suggestions
Steve Smelski:and he worked with us and, um, we started out wanting to do awareness.
Steve Smelski:And at the same time, we're going through this grief program to teach
Steve Smelski:us about our loss and our grief and the different steps in the stages, the
Steve Smelski:different things that you're going to feel it, we couldn't understand as we
Steve Smelski:started through our grief process, why.
Steve Smelski:Some of the things we were feeling, we felt like we got over him and then
Steve Smelski:two or three weeks later, they came back and they're actually stronger the
Steve Smelski:second time until they start explaining that it's like being at the ocean and
Steve Smelski:a set of waves coming in, the waves can knock you over, but it's not constant.
Steve Smelski:You can get back up, get back on your feet and wait for the next one to hit
Steve Smelski:you until they explained it that way.
Steve Smelski:We thought we were going crazy because.
Steve Smelski:It was like, man, I just got through that and now I'm going back through it.
Steve Smelski:I don't understand what's wrong with me.
Steve Smelski:Anger would come up and it kept coming back and coming back, came
Steve Smelski:back like four or five times for me.
Steve Smelski:I was angry about what had happened with Jordan.
Steve Smelski:So we're going through the program, learning and feeling like we're, I'll
Steve Smelski:say crawling for, because you don't run.
Steve Smelski:You certainly don't even walk many times you fall down at the same time,
Steve Smelski:we're working with our friends to come up with the idea of not having
Steve Smelski:any other families go through it.
Steve Smelski:And, um, after the second time through the grief program, we came up with
Steve Smelski:the idea of changing how healthcare deals with what Jordan died from.
Steve Smelski:And so he approached Dr.
Steve Smelski:Wadhawan we worked with the health departments in
Steve Smelski:Orange and Seminole counties.
Steve Smelski:We reached out to the CDC.
Steve Smelski:We reached out to several different experts around the U S and we
Steve Smelski:came up with a meeting that we held in September of 2015.
Steve Smelski:And we brought in the experts and we did a program Shelley and I
Steve Smelski:didn't even know what we're doing.
Steve Smelski:It was like, we were leaning on everybody else, but we got up and
Steve Smelski:we shared, and we cried and we told them why it had to change.
Steve Smelski:And they all got behind us and they started working well from that first
Steve Smelski:summit some of the things we came up with and the education and some of
Steve Smelski:the training actually led to the next boy that came through the hospital
Steve Smelski:from South Florida, he came up to the theme park, ended up at the hospital.
Steve Smelski:He swam in South Florida.
Steve Smelski:He actually lived.
Steve Smelski:And at that point we realized that we actually might be
Steve Smelski:able to make a difference.
Steve Smelski:So while everybody else focused on awareness, we focused on
Steve Smelski:the ones who actually got it.
Steve Smelski:Um, based on Sebastian's outcome, we put together a training video
Steve Smelski:to train other health care lab technicians on how to identify quickly.
Steve Smelski:Cause there is no early detection test.
Steve Smelski:So if you misdiagnose it or you don't consider this, the patient dies
Steve Smelski:because by the time you figured the damage is done and the patient won't
Steve Smelski:live, that's why it's 99% fatal.
Steve Smelski:So we put together a training video, which has been shared,
Steve Smelski:it's been shared in Spain.
Steve Smelski:And two years ago, there was a 10 year old girl that lived in Spain and the
Steve Smelski:doctor at the hospital that we've worked with he shared it with all of his people.
Steve Smelski:He actually went and identified the girl's case and he had watched
Steve Smelski:the video and the girl lived.
Steve Smelski:And then we realized that we really could influence something that nobody
Steve Smelski:had ever taken the approach with.
Steve Smelski:But I think it took a parent who lost two parents that have lost
Steve Smelski:a child as their motivation.
Steve Smelski:To not take no for an answer.
Steve Smelski:I mean, we get turned down all the time, but we don't quit.
Steve Smelski:In the meantime, we've continued to do the grief program and they
Steve Smelski:eventually ask us to help facilitate.
Steve Smelski:And we actually got healing from helping others.
Steve Smelski:I know it seems strange, but you get to the point where.
Steve Smelski:You're on your feet.
Steve Smelski:You don't fall down as much, but helping somebody else and helping them go from
Steve Smelski:where you were, where you are completely non-functional, couldn't stand on your
Steve Smelski:own and to be able to come out and finally smile after five or six months.
Steve Smelski:I mean, it almost felt like you weren't supposed to smile anymore because I've
Steve Smelski:got all this pain and grief to watch somebody else come through the program
Steve Smelski:where you were, and then ended up where.
Steve Smelski:They give you a hug and say, thank you.
Steve Smelski:And so I don't know what I would have done.
Steve Smelski:I'll do it the rest of my life.
Steve Smelski:It is very healing to be able to help them.
Steve Smelski:And you know, they're going to help somebody else.
Steve Smelski:It's amazing how many people we've talked through that came through the program.
Steve Smelski:They said, you know, I've had three or four people reach out to me.
Steve Smelski:And I, I actually.
Steve Smelski:I know what to say or to do or how to maybe just listen.
Steve Smelski:But until you get in that situation, I'm not sure you ever know how you
Steve Smelski:can help somebody or what you can say or what you could even do for them.
Steve Smelski:Shelly and I used to avoid people because we weren't sure what to say to him.
Steve Smelski:And I remember going to the, to the grocery store and I see somebody
Steve Smelski:in the first aisle there at the far end, I said, Oh, I'll meet him.
Steve Smelski:When I get around to the next aisle.
Steve Smelski:I look and I look, and I look to get the far end and they're gone.
Steve Smelski:And then I realized they didn't know what to say to us.
Steve Smelski:So being associated with a program that meets fairly regularly, I think
Steve Smelski:we're doing 32 weeks out of the year.
Steve Smelski:We're in touch with people who understand they get it.
Steve Smelski:They know where we're at because they're a little bit further behind us.
Steve Smelski:We had a few people that led us that are a little bit ahead of us and
Steve Smelski:to take all the extra energy that we've gotten and put it into the
Steve Smelski:foundation towards changing outcomes.
Steve Smelski:That's very, that feels good as well.
Steve Smelski:It feels like you're not, I don't think we've ever gotten back to the point
Steve Smelski:of where we were before Jordan died.
Steve Smelski:I, those people are gone.
Steve Smelski:They both died with Jordan.
Steve Smelski:I don't think were as sharp mentally.
Steve Smelski:I don't think we can stay as focused all the time, but it actually
Steve Smelski:felt good to accomplish something that nobody else had ever done.
Steve Smelski:And I remember thinking, okay, we are never going to be able to do anything.
Steve Smelski:We don't know what, we're not doctors, we don't know what's going on yet.
Steve Smelski:We started raising questions that nobody had ever addressed before,
Steve Smelski:and they were common sense questions.
Steve Smelski:And we saw exactly what Jordan went through and we were
Steve Smelski:like, that's got to change.
Steve Smelski:So we've worked with doctors from around the U S this past summit we
Steve Smelski:had in September, we had I think we had 24 doctors come in from 10
Steve Smelski:universities around the University of Washington, Clemson, University
Steve Smelski:of Georgia, Duke, Yale, UCF, USF, San Diego, and Northeastern.
Steve Smelski:And we met with all the doctors.
Steve Smelski:We did a day two, and we talked about part of the problem with this disease.
Steve Smelski:Primary Amoebic Meningoencephalitis is there's no early detection tests and
Steve Smelski:there's no drug made for this treatment.
Steve Smelski:And so we've been supporting them because they got some brilliant minds and they
Steve Smelski:may be able to come up with something that could actually save more lives.
Steve Smelski:So we've tried to stay focused on both things that helps us
Steve Smelski:personally to help others.
Steve Smelski:And it certainly helps knowing that we might change outcomes
Steve Smelski:from what Jordan died from.
Steve Smelski:Our initial goal was to make sure that we could come up with a process
Steve Smelski:for saving a patient with PAM.
Steve Smelski:So Jordan would have lived.
Steve Smelski:And we actually did that in less than two years because Sebastian
Steve Smelski:came into the same hospital.
Steve Smelski:Then we had the girl a couple of years ago in Spain who dr.
Steve Smelski:Lorenzo Miralis had actually worked with us well, because we shared the
Steve Smelski:information with him last year, I think it was a week before Thanksgiving, they
Steve Smelski:had, a free-living amoebas conference.
Steve Smelski:They call it FLA 2019.
Steve Smelski:And the doctor that we funded research for at Virginia
Steve Smelski:Commonwealth University, uh, Dr.
Steve Smelski:Francine Marsianno Carrboro.
Steve Smelski:She actually started this international conference 38 years
Steve Smelski:ago, and every two years they traveled to a different country.
Steve Smelski:And a lot of these have doctors have been to all of them, all 19 conferences.
Steve Smelski:And I met a couple doctors from Germany and this was their 19th conference.
Steve Smelski:Well, they invited us to go.
Steve Smelski:And then the conference was in Costa Rica and Shelly and I had said we would,
Steve Smelski:we would never go back to Costa Rica.
Steve Smelski:And Dr.
Steve Smelski:Morales reached out to us and said that they'd like to dedicate Wednesday
Steve Smelski:of the conference week to Jordan.
Steve Smelski:It was Naegleria Fowleri day and it was in Costa Rica and then they wanted
Steve Smelski:a debt and they wanted our permission.
Steve Smelski:So we talked about it and went to bed and we got up in the morning
Steve Smelski:and we both had the same response because I said to Shelly, I said,
Steve Smelski:what do you think we should do?
Steve Smelski:And she said, I think we should go.
Steve Smelski:But I think we should ask him if we can speak to the group.
Steve Smelski:And I smiled because that's exactly what I was going to say.
Steve Smelski:So we told them yes, they were estatic.
Steve Smelski:He contacted the team in Costa Rica and they were phenomenal.
Steve Smelski:And so Shelly and I went down with their board of directors.
Steve Smelski:The week before Thanksgiving, we ended up doing an interview while we're there in
Steve Smelski:Costa Rica and it played the whole week.
Steve Smelski:We were there on national TV, the cab driver to Subutex back to the airport.
Steve Smelski:He goes, Steve, I've been watching you on TV all week.
Steve Smelski:Well, it was a great conference.
Steve Smelski:We met a lot of different researchers from around the world, some great contacts.
Steve Smelski:We talked about the things that we were focused on and the two doctors that were
Steve Smelski:from the University of Costa Rica they, um, they were involved in a PAM case.
Steve Smelski:So at the time, Jordan.
Steve Smelski:Was the only confirmed case of PAM in Costa Rica.
Steve Smelski:They'd never had another PAM case.
Steve Smelski:In fact, I think they questioned whether he was infected there.
Steve Smelski:Cause they're all the cases in Florida.
Steve Smelski:Well, because of us going back, uh, Dr.
Steve Smelski:Lorenzo Miralis did an interview in Spanish and I did the one in
Steve Smelski:English and talked about what we were trying to do and talked about.
Steve Smelski:Jordan had some pictures of Jordan that we gave them.
Steve Smelski:Well, December 28th, 2019, a boy was diagnosed with PAM.
Steve Smelski:The same thing that Jordan was infected with Dr.
Steve Smelski:Miralis reached out to me and I go, wow, that's awesome.
Steve Smelski:How did it happen?
Steve Smelski:And he said, Steve, I asked the doctor and he said, I found out about it
Steve Smelski:from the Jordan Smelski Foundation on the interview at Thanksgiving time.
Steve Smelski:And then they didn't have the drug that they needed.
Steve Smelski:And they started treatment early.
Steve Smelski:The boy ended up passing away on January 9th of this year, but he
Steve Smelski:was now the second confirmed case and the drug wasn't in country.
Steve Smelski:Hadn't gone through customs, but they got it right near the end.
Steve Smelski:We actually spoke with his mom.
Steve Smelski:The boy who was his name was Jose.
Steve Smelski:And he was 15 years old, met with his mom and spoke with her.
Steve Smelski:One of our board members speaks fluent Spanish.
Steve Smelski:So he, he did both ways translations for us so we could communicate.
Steve Smelski:And she struggled just like we did all the same things.
Steve Smelski:So she's reached out to us a few times, but three weeks after that, Dr.
Steve Smelski:Miralis has let me know there been another case in Costa Rica
Steve Smelski:and it was a four year old girl.
Steve Smelski:Well, this two doctors who held the conference, identified it in
Steve Smelski:that case, they were aware of it because of Jose's case in December.
Steve Smelski:And she actually got what was left of Jose's drug and she lived,
Steve Smelski:and that was just in, that was like February 14th of this year.
Steve Smelski:So those are the type of things to keep you going.
Steve Smelski:Those are the types of things that you want to give back on.
Steve Smelski:Will it continue to help on the group side of it and we've started
Steve Smelski:to realize that we can make a difference and we can reach out.
Steve Smelski:It just takes an effort on our part to put ourselves out there and you never
Steve Smelski:know what's going to come out of it.
Steve Smelski:So we'll continue to help others because it's helpful to us and people did it
Steve Smelski:to help us get to where we're at today.
Marshall Adler:There's a old saying the Jewish religion that
Marshall Adler:says that if you save one life, it's like you save the entire world.
Marshall Adler:And you've already done that by changing the protocol, medically is
Marshall Adler:amazing that you've taken your grief and literally saved lives with it.
Marshall Adler:So the good work that Jordan did when he was on this earth, you and Shelly
Marshall Adler:are continuing, which is incredible.
Marshall Adler:And I'll tell you, I went to the 2019 summit that you put on here in
Marshall Adler:Orlando, Florida, Florida Hiospital.
Marshall Adler:Well, I was just amazed by the high level of organization, medical experts,
Marshall Adler:cutting edge technology and research they were doing because of you and Shelly.
Marshall Adler:It was, it was phenomenal.
Marshall Adler:It really was.
Marshall Adler:I was just blown away by it.
Steve Smelski:Oh thanks
Marshall Adler:And you know, every death is due to a medical reason, whether
Marshall Adler:it's an amoeba or heart attack, stroke, mental illness, it's a medical reason.
Marshall Adler:And throughout history, it's been a battle to figure out why that
Marshall Adler:happened, what we can do about it.
Marshall Adler:And obviously you and Shelly have really changed the course of medical
Marshall Adler:history with this amoeba, which again is like saving the world.
Marshall Adler:It really is
Steve Smelski:We've had an awful lot of help.
Steve Smelski:We've had some great support from Dr.
Steve Smelski:Rowhowin and, uh, health departments here in Florida.
Steve Smelski:We couldn't have done it on her own.
Marshall Adler:Well, I want to tell one more story that applied to us personally,
Marshall Adler:because you and Shelly were fantastic with the Grief Share course where we went
Marshall Adler:through it literally was learning about grief, but it was also very comforting
Marshall Adler:that we all spoke the same language when you're out in the real world.
Marshall Adler:You know, people saying, how about them, Yankees?
Marshall Adler:Okay.
Marshall Adler:I'm a Yankee fan, but I look at the Yankees differently
Marshall Adler:than I did when Matt was alive.
Marshall Adler:It's just, it's a baseball game.
Marshall Adler:It's different.
Marshall Adler:So when you're out, dealing in the real world is just a different
Marshall Adler:set of circumstances and people and language you're dealing with.
Marshall Adler:So being among people who spoke the same language, it just made it easier.
Marshall Adler:You didn't have to explain anything, tell the story for the umpteenth time and
Marshall Adler:try to put a square peg in a round hole.
Marshall Adler:But when it ended, it really affected us because you had
Marshall Adler:this wonderful, um, ceremony.
Marshall Adler:And I'll just digress for a second, which is interesting because what the
Marshall Adler:ceremony was, was having everybody in the Grief Share program, write
Marshall Adler:a note to your lost, loved ones.
Marshall Adler:So Debbie and I wrote notes to Matt and we all went out and threw it
Marshall Adler:in the bonfire and saw the smoke go up, hoping against hope that
Marshall Adler:your lost loved one would get it.
Marshall Adler:And Debbie's message to Matt was we'd not heard from him.
Marshall Adler:Like we absolutely believe that we had been contacted by Matt in afterlife.
Marshall Adler:And after we threw his note into the bonfire, we went into our car to go
Marshall Adler:home and it was bittersweet because we loved going through the Grief Share
Marshall Adler:program, but it was over, it was sorta, like you said, with the grief process,
Marshall Adler:everybody's, they're helpful, but then people leave and you're on your own.
Marshall Adler:In the same thing with grief shared, it goes on Monday nights, but then you got to
Marshall Adler:go back to the, to your house and reality.
Marshall Adler:And we went into the car and we know for an absolute guaranteed.
Marshall Adler:No doubt what the last song that Matt listened to on this planet, it was a
Marshall Adler:1967 song by The Association called Never My Love and of all the songs
Marshall Adler:they could have played on the radio.
Marshall Adler:We have satellite radio with a million different stations,
Marshall Adler:really different songs.
Marshall Adler:I started at car up right after we left.
Marshall Adler:And Debbie threw that note into the bonfire, asking
Marshall Adler:for Matt to give us a sign.
Marshall Adler:We turned the car on and that this Jackie says, and here is 1967, The
Marshall Adler:Association Never My Love and Debbie and I looked at each other and go, what
Marshall Adler:are the odds of that ever happening?
Marshall Adler:And.
Marshall Adler:It just meant so much to us that I think Matt really knew
Marshall Adler:we needed to hear from him.
Marshall Adler:And we did.
Marshall Adler:I really believe that.
Marshall Adler:And it's, I don't want him to say the same thing, but it just interesting
Marshall Adler:because we were, again, I'm, I'm a sports fan and they had this
Marshall Adler:documentary recently about Michael Jordan and the coach was Phil Jackson.
Marshall Adler:Who's a very metaphysical, very, very inteligient very intellectual type of guy.
Marshall Adler:And they all knew that this team was going to go the seperate ways.
Marshall Adler:And at the end of all, that the, the way they documented
Marshall Adler:ended, they did the same thing.
Marshall Adler:They took notes through it in a bonfire.
Marshall Adler:And Phil Jackson had grown up, I think, in.
Marshall Adler:Montana with very close contact with the American Indian population.
Marshall Adler:And ironically, my mother, who was this Jewish woman from New York City
Marshall Adler:was a public health nurse who spent six months on a Blackfeet Indian
Marshall Adler:reservation in broadening Montana.
Marshall Adler:And she fell in love with the American Indians.
Marshall Adler:Till the day she died she was in contact with the Blackfoot
Marshall Adler:Indian reservation in Montana.
Marshall Adler:She went out there in 1990 with my father, some 43 years after she was there.
Marshall Adler:And she saw middle-aged people that she helped bring into the world
Marshall Adler:because she was the only nurse.
Marshall Adler:If you were born 1947, she was there bringing you into the the world.
Marshall Adler:And so my mother always had a soft part of her heart with the Indian
Marshall Adler:philosophy of living and dying.
Marshall Adler:And I think Phil Jackson had that.
Marshall Adler:And I think I sort of have it now from the bonfire because
Marshall Adler:it just, I just was different.
Marshall Adler:And so it's amazing how you can take grief and say, we're going to do something
Marshall Adler:positive out of the ultimate negative that can happen to anybody because we
Marshall Adler:want our loved ones to make a difference.
Marshall Adler:And I think that, especially when you lose a child, you want to make
Marshall Adler:sure nobody's ever going to forget the effect that your son had on the
Marshall Adler:earth and the fact that they're not here now, it's our goal to do it.
Marshall Adler:So I cannot thank you enough for the effect you've had in our lives.
Marshall Adler:And for the other hundreds of people that you've affected that haven't told
Marshall Adler:you that I'm speaking on their behalf, because you've had a wonderful effect,
Marshall Adler:not just medically with the foundation, but also what you do with Grief Share.
Marshall Adler:And hopefully what we do with this show, because through technology, we
Marshall Adler:obviously are going to have a much easier time reaching many, many,
Marshall Adler:many people that will be grieving.
Marshall Adler:Again, this show will hopefully be out there.
Marshall Adler:A thousand years from now.
Marshall Adler:So I'll just tell you that we're recording this in the year 2020, when
Marshall Adler:there's a worldwide pandemic and somebody thousand years now, listening to this
Marshall Adler:might have to go through a history book or a Google, or who knows what
Marshall Adler:the be then to read about the 2020 pandemic, but we're in the middle of it.
Steve Smelski:Right
Marshall Adler:And I think because of that, it's just the unfortunate
Marshall Adler:reality that people that don't even know it yet will be in our shoes,
Marshall Adler:experiencing grief like we have.
Marshall Adler:So I know when you and I talked about how to help others, a show like this
Marshall Adler:with technology that now exists is the way to help as many people as possible.
Marshall Adler:And I know Matt would want me to do that.
Marshall Adler:And it sure the heck sounds like Jordan would want the same.
Marshall Adler:Am I correct?
Steve Smelski:Yes.
Steve Smelski:And Shelly and I are just like any other couple that loses somebody really close.
Steve Smelski:You don't want people to forget who they ever were and, um, that keeps us going.
Marshall Adler:Yeah, I forgot which civilization it was and I should
Marshall Adler:Google this, but it just came into my head that there's a civilization
Marshall Adler:that believes you actually die twice.
Marshall Adler:You die physically obviously when you're physically no
Marshall Adler:longer here and you pass away.
Marshall Adler:But you also die a second time when the last time somebody on
Marshall Adler:his planet mentioned your name.
Marshall Adler:And I heard that many times before and again, I don't know what civilization
Marshall Adler:it's attributed to, but I never really understood it until Matt passed away.
Marshall Adler:And I totally understand it now.
Marshall Adler:I want people to understand how lucky I was as a father and our family was
Marshall Adler:as a unit to have Matt in our lives.
Marshall Adler:He just was a gift from God.
Marshall Adler:And the fact that he's not here physically doesn't stop our love and it
Marshall Adler:doesn't stop the good work that he did.
Marshall Adler:And I'll, I'll just try to close with this, you know, at the Eulogy
Marshall Adler:I gave, I had to tell about Matt's life to many people didn't know him.
Marshall Adler:A lot of his friends were there, but a lot of our friends were there.
Marshall Adler:They never met Matt.
Marshall Adler:So I had to use a lot of quotations from movies and I use the line last
Marshall Adler:line that Patrick Swayze Mays, in the movie Ghost with Demi Moore.
Marshall Adler:If you remember the movie he was, he passed on and he was a ghost and
Marshall Adler:she didn't see him till the end.
Marshall Adler:And when he was going to the other side, he just told her that he said, I love you.
Marshall Adler:I've always loved you.
Marshall Adler:And it's amazing.
Marshall Adler:The love inside you take it with you.
Steve Smelski:I remember that line.
Marshall Adler:Yeah.
Marshall Adler:And I believe that,
Steve Smelski:and that is absolutely true because he's been
Steve Smelski:gone and the love doesn't go.
Marshall Adler:The love doesn't go.
Marshall Adler:So.
Marshall Adler:I think we both have a connection with our children that is different
Marshall Adler:than other people's because our sons are no longer physically here,
Marshall Adler:but it doesn't make it less real.
Marshall Adler:Doesn't make it less significant and doesn't make it less important
Marshall Adler:to the betterment of mankind.
Marshall Adler:And I believe that.
Marshall Adler:So I can't thank you enough for telling your story and you've
Marshall Adler:been such a good friend and such a help through our journey.
Marshall Adler:And what I hope from this show that both of us will be able to
Marshall Adler:help as many people as possible.
Marshall Adler:They will be on the same journey that we have been on since we lost our sons.
Marshall Adler:So, thank you so much for telling your story, Steve, and
Steve Smelski:Oh thanks Marshall.
Marshall Adler:You've been a very good friend.Thank You so much.
Steve Smelski:All right.
Steve Smelski:Thank you.
Steve Smelski:Thank you for joining us on Hope Thru Grief with your cohost
Steve Smelski:Marshall Adler and Steve Smelski.
Marshall Adler:I hope our episode today was helpful and informative.
Marshall Adler:Since we are not medical or mental health professionals, we cannot.
Marshall Adler:And will not provide any medical, psychological, or mental health advice.
Marshall Adler:Therefore, if you or anyone, you know, requires medical or mental health
Marshall Adler:treatment, please contact a medical or mental health professional immediately.