Chris:
In our darkest moments, we often wonder how we can ever get over it and get through. Today’s guest has gone through something that most people hope that they would never experience and can imagine they could never get through, but she did. We’ll talk about that today.
Chris:
Welcome back to the Get Overit Podcast. I am your host, Dr. Christopher Fasano. Before we begin today’s episode, I just want to remind everyone the best place to get new episodes of the show is to subscribe to your favorite podcast player, Apple podcast, Spotify, Google podcast. You can also watch these interviews on YouTube, so please check YouTube out. Give it a subscribe. If you’re really enjoying the show, we ask you please to leave a five star review on Apple podcast. That way other people can learn more about the show. It’ll help it move up in the rankings and more people can learn how to get over it. Okay.
Chris:
So I’m really excited and humbled to have our guest today on the show. Our guest is Jennifer Hendricks Fog. She’s an independent benefits consultant for Aflac and the founder and president of the Logan Strong foundation, which provides support services to pediatric cancer patients and their families. She’s also the author of Tiny Miracles. I have the book here, so I’m going to show everyone the book here. A mother’s journey of finding faith through childhood cancer. It’s an incredible story. You can hear me getting emotional already. I hope I can make it through the whole interview. So welcome to the show.
Jennifer:
Thank you so much.
Chris:
Okay. So I really want to talk to you a lot about this, but I want to understand. I just met you.
Jennifer:
Sure.
Chris:
Tell me about yourself. Are you from this area up here? Where are you from?
Jennifer:
I’m born and raised in Colony.
Chris:
Okay.
Jennifer:
Colony high grads.
Chris:
So for everyone who is not from this area, Colony New York is… Is it Albany county?
Jennifer:
Yeah.
Chris:
It’s Albany county. It’s about 10 minutes from where we are in Albany about Northwest a little bit.
Jennifer:
And fun fact, I don’t know if you knew this, Colony is actually the largest township in America.
Chris:
I think someone told me that recently. It’s crazy.
Jennifer:
Fun fact. Yeah.
Chris:
I know. It’s an awesome place. There’s so much to do out in Colony. It really is.
Jennifer:
Yeah.
Chris:
So you born there and you lived there, you went to school there?
Jennifer:
Yeah.
Chris:
High school?
Jennifer:
Yeah.
Chris:
Public school?
Jennifer:
Yeah.
Chris:
And then college?
Jennifer:
I did. I went to Hudson Valley.
Chris:
Okay. So you’ve been here.
Jennifer:
Local. Yeah. I lived out of state. I lived in California for a little bit, lived in Florida for a little bit, but New York has always brought me back.
Chris:
I lived in Florida for college. How was your experience getting away from New York? Did you like it?
Jennifer:
If I went back to California right now to visit, I don’t think I’d come home.
Chris:
Really?
Jennifer:
I love California.
Chris:
So you loved it?
Jennifer:
Florida, not so much.
Chris:
Yeah. I could never live back in Florida.
Jennifer:
No, I don’t mind visiting Florida. [crosstalk 00:02:32].
Chris:
Although my wife and I will frequently in the dead of winter be like, what are we doing? Why are we here? We should just move to Florida. And then we go to Florida to visit and I’m like, but it’s Florida. Nothing against Florida.
Jennifer:
It’s flat and it’s humid. Not for me.
Chris:
Where in California did you go?
Jennifer:
Northern California.
Chris:
Northern California.
Jennifer:
Redding, Chico area.
Chris:
It’s beautiful.
Jennifer:
Absolutely.
Chris:
The climate is so different too in California, wherever you are.
Jennifer:
I never understood the difference between heat and humidity until I lived on the West Coast.
Chris:
Yeah.
Jennifer:
And I still remember, there was a day when I lived out there, it was a record setting high of 120 degrees. Sitting in the hot tub looking at the mountains covered in snow.
Chris:
That’s bizarre.
Jennifer:
I don’t ski or surf, but it’s the only place you can go where you could do both in the same day.
Chris:
Humidity is something that is just offensive. I lived in Miami. And it’s one thing if you go and visit Miami. You go to visit Miami, you go in the fall, you go in the winter, whatever. It’s beautiful. It’s like tropical. You live in Miami through a summer, it’s stifling. I mean, humidity is like… It gets humid. I’m talking, you feel it. You can put your hands through. [crosstalk 00:03:40].
Jennifer:
And you can’t breathe.
Chris:
And people are like, “Hey, why aren’t you at the beach today?” I’m like, “Beach? What are you? Nuts? I’m not leaving my house.” It’s funny how that happens, right? You go to a warm place, you stay inside of the air conditioning, you live in the winter, you stay inside in the heat. Humans I feel are never really happy with wherever they are.
Jennifer:
True story.
Chris:
It’s really what happens. Okay. So then you meet your husband around here? Is he local too?
Jennifer:
Yeah.
Chris:
Okay.
Jennifer:
So my husband’s from Scotia.
Chris:
Okay.
Jennifer:
We actually met for those of people that are local at O-tools. It’s like the local cheers.
Chris:
Okay.
Jennifer:
But interesting enough, I met my husband 25 years ago. I used to date one of his friends when I was younger.
Chris:
Man, I love these stories.
Jennifer:
So I knew his name, but I wouldn’t know him if I tripped over him. So we reconnected and it just happened. It just clicked. We were in our mid thirties when we met, which is interesting because typically at that age there’re exes, children and neither of us had that. So it was a nice, fresh start for the both of us.
Chris:
And you’ve been married. You’re still married.
Jennifer:
We’re still married.
Chris:
You’ve been married…
Jennifer:
We’ve been married now seven years.
Chris:
Seven years. Okay.
Jennifer:
We’ve been together 11, I believe.
Chris:
Okay. And so then like many marriages you decide that you want to have children. And from what I read about, you went through IVF to have your child?
Jennifer:
Yeah. Correct.
Chris:
Okay. And I don’t know if you’re comfortable telling me this, but was it that you couldn’t conceive or you was just that it was part of your time of your life?
Jennifer:
I was old.
Chris:
Okay. All right. And it was a timing thing?
Jennifer:
Correct.
Chris:
Okay. All right.
Jennifer:
So we tried for about six months and the doctor said typically they tell people to try for about a year, but because I was 39 at the time. And they said try for six months, and then there was nothing wrong with my husband or I. Both of our tests were fine. And it was basically just a steroid shot that just gets you going and they time everything.
Chris:
And you can see it fairly soon or no?
Jennifer:
Initially.
Chris:
Okay.
Jennifer:
As soon as we went to IVF they gave me the shot. They tell you when to do the deed, and then they tell you when to take the pregnancy test and it worked like clockwork. So first shot and done.
Chris:
And what hospital did you have him at?
Jennifer:
Albany Med.
Chris:
Albany Med. Okay. So the pregnancy, everything was normal with your pregnancy or is it… [crosstalk 00:05:48].
Jennifer:
For the most part.
Chris:
For the most part?
Jennifer:
Yeah. So when I got pregnant, I knew because of my age. And I was born at Albany Med, even though we currently live in Scotia. So there’s other hospitals closer. I knew I wanted to get birth at Albany Med because, God forbid there was something wrong with near my child, I would be in the right place.
Chris:
Yes That’s for sure. Yeah.
Jennifer:
And because of my age, I luckily enough had extra ultrasounds. So they were monitoring me and the baby. And at our last ultrasound, they noticed that there was fluid on my son’s brain.
Chris:
Okay.
Jennifer:
So we were at the doctors the entire day that day, just trying to figure things out.
Chris:
How far into the pregnant? How far is this?
Jennifer:
I was about 35 weeks at this point.
Chris:
Okay. All right. But that’s all they could tell. That’s all they could ascertain it to that point.
Jennifer:
Correct.
Chris:
Okay.
Jennifer:
And then a week later they scheduled me for an emergency MRI to find out what was going on. Doing an MRI when you’re 35 weeks pregnant is not comfortable at all.
Chris:
Do you fit in the tube?
Jennifer:
Barely. It was so uncomfortable. [crosstalk 00:06:50].
Chris:
Because I went for an MRI for my shoulder for the first time. They’re a little bit bigger nowadays. And even that got me a little. My heart started racing a little bit. It was a little uncomfortable.
Jennifer:
Well, it was interesting enough too at the time. I don’t recall the reasoning, but Albany Med had literally a tractor trailer outside of that part of the hospital because they had so many MRIs they were doing or the machines were getting fixed. I don’t know. And I had to go into a tractor trailer and have the MRI. It was this whole set it up.
Chris:
So they wanted to see what they could find.
Jennifer:
Correct.
Chris:
What did they see at that point?
Jennifer:
It was a brain bleed. So I had the MRI that morning and by like five or six o’clock the doctor hadn’t called, so I was like, everything must be okay. Around seven o’clock that night, the doctor called and said, “So we want you to check in to the hospital tomorrow for further testing.” And right then and there I knew that… [crosstalk 00:07:43].
Chris:
You were like, something’s not right.
Jennifer:
I knew something was wrong. I knew that when I went into the hospital the next day I was having a kid. And I said to my husband, I go, “We’re having a kid tomorrow.” He’s like, “No we’re not.”
Chris:
Is that all they told you though on the phone?
Jennifer:
Yeah.
Chris:
Okay.
Jennifer:
But I did ask her, I said, “should I pack a bag? Should I pack my bag? Should I pack the babies?” She’s like, “You may want to, just to be safe.” So we get to the hospital and the radiologist basically told us that he had a deadly platelet disordered called Nate NAIT and he did not have a good bedside manner at all. And I looked him in the face and I had a few choice words for him. And I said, “Get him out and fix him.”
Chris:
Right. There’s not an option here. Right.
Jennifer:
Yeah. So then the NICU doctor came in and he was so kind and so generous and so sweet.
Chris:
I got to say, if that’s going to be your job in the NICU, and you’re going to be dealing with newborns with issues, you better be able to have a communication style.
Jennifer:
The radiologist was awful.
Chris:
People are at their… It’s like a disastrous point in someone’s life, and you’re going to give them not great news or you’re dealing with situations. So I have to imagine, I hope that’s part of the gig but not always…
Jennifer:
The radiologist, not so much, but the NICU doctor… And I can’t remember his last name to say the life of me, because he told me to call him by his first name, so I always call him Dr. Michael. He basically said, “Look, we don’t know what it is. It could be a million things, but we need to get him out and figure it out.”
Chris:
So we can figure it out. Right.
Jennifer:
So he gave us the choice. They gave me steroid injections to help the baby’s lungs. And they said you can do an extra dose tomorrow and we can do an emergency C-section tomorrow or we can do it today, and I was like, “Well, what do you think?” And he goes, “It’s your choice.” He goes, “But baby’s younger have survived.” So I was like, let’s just do it. So we did it that day. I had an emergency C-section. And Albany Med is a teaching hospital, so I remember… [crosstalk 00:09:40].
Chris:
I went Albany Med for my doctorate.
Jennifer:
We’re so lucky to have them here. And I remember as they were… She told me she was going to cut me open wider than normal because there was a brain bleed and they wanted to make sure that they had enough room to get him out.
Chris:
Yeah.
Jennifer:
And I remember her saying, and again, I don’t remember the doctor’s name, because there were students there she said, “I’m taking the baby out.” She’s the one… [crosstalk 00:10:05].
Chris:
Right. We’re not messing around here. Right.
Jennifer:
No. She did it. Right. And it was a drive by. They were like, here’s your kid.
Chris:
And that was it.
Jennifer:
Off he went into this room over here and I got to kiss his cheek and then he was gone on.
Chris:
So now you’re in recovery, you’re recovering. How long before they come to tell you anything?
Jennifer:
So it took me about eight hours to recover. My husband got to hold him first. The one thing I wanted I remember is that I just want to hear him cry. And he did, he came out kicking and screaming. So I was okay. We’re good. I spent four days in the hospital, he spent five days in the hospital. They tested my son.
Chris:
He being your son.
Jennifer:
Logan. And they tested him for anything and everything. And the conclusion was it was a birth defect.
Chris:
Okay.
Jennifer:
So they’re like, we’re just going to monitor it. It’s a brain bleed. It’ll it’ll hopefully dissipate on its own. So he was born November 18th. At the end of December that year he had an MRI and the brain bleed was dissipating. Doctors were happy with it. They said, “Why don’t we start PT just to be safe. But things are looking good.”
Chris:
They didn’t see anything on that scan? Okay.
Jennifer:
So then on March 8th, 2018, we had a follow up MRI.
Chris:
That’s three months, roughly. Yeah
Jennifer:
Yeah. He was about three and a half months old at that time. We had a follow up MRI and I remember it like yesterday.
Chris:
I imagine you do
Jennifer:
We’ve been blessed to have pretty much all the same doctors we’ve had since the day he was born. So our oncologist, our neurosurgeon, our neurologist, our developmental pediatrician, all the same since day one. So when we went for the follow up MRI on March 8th, we went right to the doctor’s office afterwards. And I remember he waited for the nurse to close the door before he said anything to us. And he had never done that before.
Chris:
And see, it’s so interesting what you notice in those situations. You know what I mean? I’m sorry, go ahead.
Jennifer:
You’re fine. And he told us it was a malignant brain tumor. And it took me a minute. Malignant, is that cancer or not? It took me a minute to kind of… And I was like, my God. And then honestly, the rest is just… [crosstalk 00:12:22].
Chris:
Did you hear anything else?
Jennifer:
The rest is a blur, to be honest. The rest is a blur. I remember they brought us up to one of the side rooms in the PICU, which is the pediatric ICU. And I had a girlfriend that worked at the hospital, another girlfriend came to see me, my parents came. My husband’s parents were in North Carolina, so they got in the car and just started driving up. And they told me that unfortunately they thought it was either a ATRT or a glioblastoma. And I had recently lost a very close friend to a glioblastoma a few months earlier.
Chris:
Which are one of the most, if not aggressive, brain tumors.
Jennifer:
Correct.
Chris:
Yeah.
Jennifer:
So they told us, “We’re so sorry. There’s there’s not much we can do.” Then they asked us, “When’s the first time did he have a seizure?” And I was like, “He’s never had his seizure.” They’re like, “Really?” And they had told us that if we would’ve waited a week later, it probably would’ve been too late. So I said… [crosstalk 00:13:22].
Chris:
Now, I saw the scan by the way. I don’t know where I saw it. You might have put it somewhere.
Jennifer:
I think I posted it.
Chris:
And it’s incredible. When you look at the size…
Jennifer:
It was a third of the size of his head.
Chris:
I mean, it was shocking. And so when I read things like these and I hear this story, I’m putting myself in that room. I have a nine year old boy and I’m thinking to myself, if I hear that, I imagine things go kind of dark. It’s like that in the movies where like the speech starts to [inaudible 00:13:55] and that’s all you hear. I’m imagining I don’t process it just yet. So they tell you that, what happens? So now you’re with your husband. And when does it finally… When does it hit you? And what is that like? I know it’s probably very hard to put into words, but I imagine it’s just like everything’s destroyed in there, right?
Jennifer:
Yeah. Your world changes in a split second. And my response to all of these negative discussions was, I didn’t wait till I was 40 to have my first kid for God to take him away.
Chris:
Right.
Jennifer:
So to figure it out, what do we do to fix this? This isn’t a, “Hey, we’re so sorry. There’s nothing we can do.”
Chris:
You want them to be like, “Okay, there’s nothing we can do.”
Jennifer:
No. That wasn’t an option. So they did a biopsy and they sent the biopsy to New York city, Boston and Atlanta. Now, I had been with Aflac for about five years at this point and Aflac sponsors children’s healthcare of Atlanta, the Aflac cancer and blood disorder center. And so I had known CHOA as we know it, not Atlanta. So they sent the biopsy out and they had good results from Atlanta. And I’m like, “That’s great. What do we do?” They’re like, “We’re cautiously optimistic. That was their terms, cautiously optimistic, because they had diagnosed it at that point as a congenital glioblastoma.
Chris:
Which is one of the forms that has some hope to it.
Jennifer:
Correct.
Chris:
Right.
Jennifer:
So to your point, glioblastomas are the most aggressive, deadly brain tumors. But being that it was congenital, being that he was born with it, was more treatable.
Chris:
Correct. For my listeners who were listening to me, I’m a neuroscientist by training, so this is why I’m a little bit more understanding. I’m not just saying these things up the top of my head. I just had some context like, what the hell does Chris think he knows. I know a little bit about these things.
Jennifer:
And to that point too is that they don’t… Typically, brain tumors are treated with radiation and they don’t radiate under the age of three.
Chris:
Okay.
Jennifer:
So when they said they were cautiously optimistic, I was like, “All right, let’s go. Guns are blazing.” And ironically enough the doctor that they were communicating with in Atlanta was the same doctor I was connected with through… [crosstalk 00:16:13].
Chris:
It’s so weird. Isn’t that weird?
Jennifer:
Through my people at Aflac.
Chris:
So weird.
Jennifer:
Our story sucks.
Chris:
It’s almost like it was laid there for you and you didn’t even realize, right.
Jennifer:
I tell people all the time, our story sucks. I wouldn’t wish it upon anybody, but I’m a firm believer in everything happens for reason.
Chris:
For a reason. Yeah.
Jennifer:
With Aflac I sell cancer insurance for a living. It’s what I do. I had the cancer.
Chris:
This was before.
Jennifer:
Yeah. I added my son to all my Aflac policies, and Aflac, the hospital that they sponsor is the one that wrote my son’s treatment plan. So I get chills every time I share that because, again, it sucks, but I’m a firm believer in everything happens for a reason.
Chris:
So they then have a course that they say, this is what we’re going to do. I imagine its chemo to shrink it so they could possibly then go in and excise it.
Jennifer:
Exactly.
Chris:
Okay.
Jennifer:
So the plan was five aggressive rounds of inpatient treatment it and then eight rounds of outpatient treatment in hopes that it would shrink. And after two rounds of chemo inpatient, it actually shrunk in half. They were very surprised how quickly it shrunk.
Chris:
And was that? Here? Where was that?
Jennifer:
Albany Med.
Chris:
Albany Med. Okay.
Jennifer:
Again, we were so lucky they were able to do all the treatment here in Albany. We didn’t have to travel.
Chris:
Okay.
Jennifer:
That’s the nice thing about pediatric cancer, I guess, is that all these hospitals talk, but you can have your treatment where you are.
Chris:
You can have your treatment. Right. Yeah.
Jennifer:
So after two rounds of chemo, the tumor shrunk in half. And Dr. Adamo, I’ll name drop him.
Chris:
Matt worked in the same lab as me. I know Matt.
Jennifer:
And then walks on water.
Chris:
The thing about Matt, and this is, this is true for a lot of neurosurgeons, they are so oddly calm.
Jennifer:
I was just going to say, he’s so humble.
Chris:
If you talk to them, they’re just like, yes, so we’re basically going to go in there. And it’s like, dude. And like what I’ve learned about them is that their training is so extensive and to do what they do, you have to be unflappable. You can’t be in someone’s head or spine and be like, wow, and start freaking. So I know Matt and I’m imagining him having a conversation right now. He’s very soft.
Jennifer:
Very calm. Yeah. It’s funny you mentioned the hands because the social worker watched one of the surgeries when he was extracting the tumor and she’s like, “I just saw your kid’s brain.” And I was like, “Don’t tell me.” But I’m thinking how steady does this man hands have to be.
Chris:
I don’t even know.
Jennifer:
So he had the resection.
Chris:
How long was that after everything started?
Jennifer:
So he was diagnosed March 8th. At the beginning of May he had the first resection and he was able to remove 50% of the tumor.
Chris:
Okay.
Jennifer:
And it was probably an eight hour surgery, so pins and needles the whole time. Your son could bleed out, he could die on the table, he could be paralyzed. All these additional worst case scenarios after you come… [crosstalk 00:19:20].
Chris:
On top of the fact that he has this tumor. Yeah.
Jennifer:
Right. And Dr. Adamo, he’s so, I just want to say stoic, because he’s just… When he comes out of the operating room I’m like, “Can you show me something with your face because I don’t know.”
Chris:
That’s the thing, you don’t know what’s going on. There could be the best thing in the world has happened and they look the same.
Jennifer:
And he pulls us into a side room, and at this point it was so new. We had all our friends of family. There was probably at least 15,20 people there with us. So we all come into this room and he’s like, “So I got half of it. He’s doing great. He’s moving all his extremities.”So I’m just bawling. And Logan was actually the first pediatric patient at Albany Med to have three EVDs, the external ventricle drains.
Chris:
Yeah. Okay.
Jennifer:
What sucked was that this is my baby. He’s six months old at this time and I literally had to clamp drain in order to move him, to hold him, to reclamp to make sure everything was level.
Chris:
So just for everybody, a ventricular drain is something they put in to offset swelling. It’ll drain out the ventricles. Ventricles are the holes in your brain where fluid flows. And so when you have swelling and trauma. Okay.
Jennifer:
That’s great.
Chris:
Okay. So they get half.
Jennifer:
Yeah.
Chris:
Now, it’s not done obviously, because he still has tumor in his brain.
Jennifer:
Yeah. So Dr. Adamo came in the next day and said, “Okay, I want to go back in next week.” And I looked at him and I go, “Are you a cowboy?” Last week you weren’t sure and now… [crosstalk 00:20:49].
Chris:
But maybe because they could see it.
Jennifer:
And that’s what he said. That’s what he said. He said, “I know what it looks like now.” He’s like, “I know what I’m dealing with.”
Chris:
Right. Because it’s always one thing to see something on film, on a screen, on an MRI, but I guess when they go in…
Jennifer:
Correct. Yeah.
Chris:
All right.
Jennifer:
So he went back in a week later and they were able to remove 45%. So they removed a total of 95% of the tumor. The 5% he left was in the center of his brain.
Chris:
So they didn’t want to do any further damage.
Jennifer:
They didn’t want to touch that because I believe that is the memory bank, things like that, so he didn’t want to touch that. And again, the surgery again, we had to wait. He came out kicking and screaming. And he wasn’t paralyzed, he didn’t bleed out, so we did that, but we continued the additional three rounds of aggressive inpatient treatment to get the rest correct.
Jennifer:
And then we did end up doing six rounds of outpatient. We didn’t have to do the full eight rounds because Dr. Weintraub our oncologist was part of a tumor board and they’re basically studying my son because… I don’t know if I mentioned this he’s number 87 or number 88 ever diagnosed with this particular type of tumor. So less than 100 cases documented ever. And we’ve had great success. And a part of it they attest because my husband and I wouldn’t take no for an answer.
Chris:
So I want to ask you about that, but before I do so everyone can understand, eventually did they get it all to the point where it’s like, what they call remission, they don’t see it?
Jennifer:
Yeah.
Chris:
So how long was that total? Was it over a year from when he was diagnosed to when they were like, no it’s gone?
Jennifer:
So he was diagnosed March 8th and personally I look at it as the last day of treatment. So his last day of treatment and the day he got his port out was September 24th, 2018.
Chris:
Okay.
Jennifer:
So just about a year and a half, he went through treatment. So he’s been cancer and treatment free since September 2018.
Chris:
How did he do during the treatments? What was that like for him?
Jennifer:
It was awful.
Chris:
It was terrible?
Jennifer:
It was awful. So he now has a feeding tube.
Chris:
Okay.
Jennifer:
After the second brain surgery he stopped taking food by mouth. I think it’s partially because of the brain injury, but I also think it’s partially because the kid had chemo for the first year and a half of his life and he just threw up, so why would you want food in near your mouth also? So he’s a little over five right now, so he’s still a hundred percent tube fed. Like I said, he does have a brain injury from where the tumor is or where the tumor was, so it affected his left frontal lobe, which typically affects your personality, impulse control, feeding, speech.
Chris:
But I watched a couple videos of him. I’m sorry, but I watched a couple videos of him laughing and crying. I’m seeing him my son and I’m saying to myself, he’s just a boy. He’s just a kid and you can see his emotion. And it’s like, yes, he’s gone through all this trauma and you mentioned all the things he doesn’t have, but you must look at that and feel like.
Jennifer:
He’s overcome.
Chris:
He’s just sweet.
Jennifer:
He’s a good kid. I said the left frontal lobe affects your personality. It did not affect my kid’s personality at all.
Chris:
Right. That’s what I’m saying. You can see it in… [crosstalk 00:23:57].
Jennifer:
He’s got such a mix of my husband and I. I’m like an in your face type of person and my husband is laid back and chill, and that’s my kid. My kid is totally chill and calm, but when he wants you to know something, he will tell you. And he will kick and scream and fight, but he will still do it.
Chris:
What about verbally? How is that affected? I mean, I imagine, does he speak?
Jennifer:
Yeah. So they told us first that he wouldn’t survive. They told us he would never walk. And I tell people doesn’t walk, he runs. They told me he would never talk and probably never eat. A year and a half ago. The developmental pediatrician said, “Forget I told you he’d never talk.” He knows all his shapes and colors. He can count to 20. He can count backwards from 10. He knows the alphabet. He’s now putting three to four words together, so now he can communicate a little better and say, “I want.” and tell us what he wants.
Chris:
That’s great.
Jennifer:
The biggest issue is the impulsivity. I mean, you can see my hands. He’s an attack child, but he doesn’t know any better.
Chris:
Right. Exactly.
Jennifer:
And he’s really and he’s smart and he’s a fighter and he doesn’t give up.
Chris:
No. Well, he’s like you. He’s like his parents.
Jennifer:
Yeah.
Chris:
I want to talk to you about that. Where does that come from? Have you always been like that? Have you always been a fighter? Have you struggled? Have you been through struggle in your life or is it just like, you were just a mom in a moment where you’re like, this is my kid and I’m never going to give up? I often wonder when people are tested like that. I put myself in that position. Different but related, my wife’s mom passed very young and she had a sudden heart attack and she lived on.
Chris:
She was in the hospital for four months and we didn’t know. And I remember you go through that, you often wonder, what am I going to do in that situation? How would I handle it? And when we were in that, it was awful, but you figure out a way to get through it. Do you think anybody can do that or does it take a certain type of person. People hearing this are like, there’s no way I can do it, but you’re not in it. I guess when you’re in it…
Jennifer:
Yeah. So I used to say that if it were your child you would do the same thing. But unfortunately, witnessing other families while we were fighting cancer, there was another little boy that was fighting cancer, a brain tumor as well, that the family was never there. And he’s around my son’s age and still can’t even sit up on his own. So I used to say, you would do it too, but I don’t know.
Chris:
Right. You don’t know.
Jennifer:
You’re either have it or you don’t.
Chris:
Yeah.
Jennifer:
And again, I didn’t wait till I was 40 to have my first kid to have to him taken away.
Chris:
Right.
Jennifer:
And I also look at it as, I was chosen for this journey, because if I was 20 and had him, maybe I wouldn’t know what to do.
Chris:
Right.
Jennifer:
I’ve had my life experiences, I’ve lived my life. I’ve always been a type A type person, but as far as other travesty, nothing…
Chris:
Just the regular struggles of normal life. Right. Yeah.
Jennifer:
Getting horrible men and job hoping, but that’s life.
Chris:
Your husband. I want to talk to you about this because my wife and I, we’ve talked about it, I watched her go through that terrible time and it affects your relationship when something like this happens. And I can only imagine when it’s your kid, that it could do two things. It could completely drive you apart and make your relationship a mess and destroy that as well. And possibly if it took a terrible turn, maybe it would, but how did that work out with your… I mean, you’re still together with your husband, but did it strengthen it? Was it difficult at that time to be in a relationship. I mean, I imagine the only thing you’re thinking about is your kid, right? So tell me a little bit about that.
Jennifer:
Yeah. So the first few months we were each other’s rock. If I was upset, he would pull me up, or if he was upset, I would pull him up. So we had that balance. But after that, he had to go back to work full time.
Chris:
Right. Yeah.
Jennifer:
So I was the one in the hospital.
Chris:
You were the one. You were in the trenches there. Yeah.
Jennifer:
So it did cause some friction. I mean, I remember one evening Logan stopped tracking. The chemo was working. He had a shunt and the chemo was working, so the particles from the tumor clogged his shunt. So he stopped tracking and I could tell. And I remember my husband and I got in a huge fight that night, and I was like, I don’t want to talk to you. And then at one o’clock in the morning this happened, so I had to call him and I was like, you need to come here now. So even though like we had that friction, we still knew at the end of the day, our goal was to help our son.
Chris:
You were aligned in that. Right.
Jennifer:
Right. Yeah. It was definitely difficult. We see a counselor now. I go, he goes, we go together. So it’s definitely beneficial. We still have our moments. It’s hard. He works full time.
Chris:
Right. Because this is like a real… [crosstalk 00:28:50]
Jennifer:
And our journey doesn’t just end with him being cancer free. He has a brain injury now. He can’t do “normal things.” And I don’t like to compare. It’s hard not to, but it’s hard. And I think I joked in the book too, I don’t know if I could handle the normal kid. Seriously, because my kid is so chill and laid back. Yes he attacks me, yes I have to feed him via a feeding tube, no, he can’t communicate and he can’t talk to me, but he’s super chill and he is fun,
Chris:
Right. Yeah.
Jennifer:
I don’t know if I could have a regular five year old talking back to me all the time.
Chris:
Yeah. I know. You’re right. It’s true. If you think about it it’s so true. My God. Last question, and before I talk about the foundation is, talk about your support you had in the time, because hospital life is like a life. It’s like a disastrous situation. Again, we did it with a different story, but what about support in all of that? You had family, you had people there for you. And how much did that matter and help you?
Jennifer:
It was super helpful. I would stay when Logan was inpatient. We literally lived at Albany Med for the better are part of six months. We were home maybe two weeks out of that six month period. And I would stay in the hospital during the week, my husband’s mother would stay on the weekends, my mother and my… [crosstalk 00:30:10].
Chris:
You would stay there?
Jennifer:
I lived in the hospital with my son. And if you need help packing tips for the hospital, I got them for you.
Chris:
You got it.
Jennifer:
So I would say during the week, my husband’s mother would stay on the weekends with my husband’s dad, and then my mom and my father would rotate. And I had friends here and there. We limited it. We only had a couple of other people in addition because he was getting chemo and he was constantly immuno compromised.
Chris:
Right. You don’t want to get infections. Yeah.
Jennifer:
So we really kept our circle really close. Even when we came home, even when he went through the outpatient treatment, our circle was extremely close. So during COVID, that was nothing for us. Been there down there.
Chris:
You’re like, we can do this
Jennifer:
Quarantine, we got this.
Chris:
Did he have certain restrictions though for COVID? Was he considered in a higher risk or no?
Jennifer:
No. So the good thing with Logan is now he sees a regular pediatrician and the constant reminder that I get from Dr. Weintraub is that he’s just a regular kid.
Chris:
He’s just a regular kid. Right. It’s the strike.
Jennifer:
So he’s all caught up on all his regular immunizations, which obviously had to stop during treatment. But he’s all caught up and he’s a normal kid by all medical standards.
Chris:
The foundation. So when did you start the foundation?
Jennifer:
Right in the middle of treatment?
Chris:
Russ?
Jennifer:
Why not?
Chris:
Is that really when it was?
Jennifer:
Yeah. So he was diagnosed March 2017, finished treatment in September 2018. We started the foundation in January 2018.
Chris:
And was that just like, you just were on this mission to… I have to be able to help. If other people are going through this, I need to somehow lend to their experience.
Jennifer:
I’ve always been a giver. I’m in rotary and our first rotary project 11 years ago was the bins of fun for Albany Med. So we would donate bins of choice to the melody center. And I remember being in PICU one day and Rob Saba who works at the Albany Med Foundation came in and he’s like, “What are you doing here?” And I’m like, “That’s my kid.” He’s like, “What?” So it was like a full circle thing. And I’ve always been a giver. I’ve always given back. And there’s fantastic local childhood cancer organizations here in our area and nationally, but going through it, I found things that were missing.
Chris:
Right. You were there.
Jennifer:
Right.
Chris:
You saw it.
Jennifer:
Simple things like bracelets. We provide brace slits to our families for fundraising. Simple fundraiser and it brings awareness.
Chris:
Cool. That’s cool. Yeah.
Jennifer:
They can sell them for a dollar, $5, whatever they want. We give them 500 bracelets, do whatever you want with them.
Chris:
Okay. Cool.
Jennifer:
Part of the mission with the foundation is not just providing for the families, but also raising awareness because there’re other cancers that get more attention.
Chris:
Yeah, of course.
Jennifer:
And my philosophy, obviously not only because it’s my child, but my philosophy is, if we can heal these kids, maybe they can be the ones in the future to heal us all.
Chris:
To heal us all. Right. Yeah.
Jennifer:
So we do t-shirt fundraising campaigns for our kids, we provide gas carts, we provide food gift cards to the families.
Chris:
To the families. And what do they do? Do they reach out? Do they apply for it? What is the process?
Jennifer:
Yeah. So we typically work with melody center at Albany Med.
Chris:
Okay.
Jennifer:
We do have some families through our own personal networks on the board. Like right now we’re helping a kid in Florida, a friend of a friend in Florida. We’ve helped somebody in Texas, but that’s all through networking. But primarily we get our families through Albany Med. We get a statement from the child life specialist saying, “Hey, this child was just diagnosed. They need this and this.” So when we get that, we send that family an application for our services along with gift cards. And if they want our services, they fill out the application. We do the bracelets, the t-shirt fundraising campaigns, we give them more gift cards if that’s what they need. We also do an Amazon wishlist.
Chris:
That’s cool.
Jennifer:
Yeah. So the family or the children can just go on and say, “I need new toys or I need new clothes.” Or whatever the case may be. Sometimes we’ve done… Families sometimes have to go to New York city for two. So on that wish list they’ll put a comforter or lights to make their room look nice or whatever they need to help comfort them during their time.
Chris:
And do you have these little fundraising? Do you have a fundraiser, a big one that you do? Or do you do little activities here and there?
Jennifer:
Our biggest fundraiser is our golf tournament in September. So this year it’s September 19th at the Fairways of half moon. We have a couple of fundraisers throughout the year. Our next one we have coming up is, we are part of the Albany Lacrosse game on April 30th. So there’s a link actually on our Facebook page to purchase tickets for that. We just get money back from the tickets. And then in May we do our walk for the kids that can’t. So September is childhood cancer awareness month, which is why we do the golf tournament, and then May is brain tumor awareness month.
Chris:
So you do them in both those…
Jennifer:
Yeah. Both corresponding with Logan.
Chris:
And the website. Where can people go if they want to just see more or want to donate or want to find out more it?
Jennifer:
Loganstrongfoundation.org.
Chris:
Loganstrongfoundation.org. And there’s a Facebook page as well?
Jennifer:
Correct.
Chris:
Okay. All right. Cool.
Jennifer:
And I do want to make mention to the other thing we do for the kids. And we give no touching signs. They’re, no touching, your germs are too big for me.
Chris:
That’s good.
Jennifer:
So they’re signs that we give to the families because when the kids are on chemo, they don’t want to be touched.
Chris:
Right. And they’re still kids.
Jennifer:
And especially like with us, we had a baby. Everybody wants to touch a baby and it’s like, stay away from the kid.
Chris:
Get away. Don’t touch.
Jennifer:
I don’t want your germs.
Chris:
Don’t touch.
Jennifer:
And then we also give… We call them Ochos. They’re crochet octopi. So it’s a little crochet octopus, and somebody sent one to Logan when he was going through treatment and he just fell in love with it. So it’s one of our trademarks that’s we do.
Chris:
That’s your thing. That’s cute.
Jennifer:
They’re actually designed for children in NICU. For babies in NICU because they symbolize the umbilical cord. I actually have one on my desk because it’s just calming. I should have brought one.
Chris:
Interesting.
Jennifer:
They’re adorable. So if any crochet hairs are out there and want to knit an octopus, I’ll give you the pattern.
Chris:
That is so interesting.
Jennifer:
Yeah. We love those.
Chris:
That’s cool.
Jennifer:
Yeah.
Chris:
That’s cool. I want to actually look that up. That’s a cool concept. That’s really cool.
Jennifer:
Yeah.
Chris:
Before we go, I want to ask you about your life post. I’m thinking about this, you have your phone next to you and you said to me, I need to keep my phone here. How are you in that world, in your mental health space after this, this is like a traumatic event and it’s like post traumatic stress. Are you anxious about it? I mean, one of the things I remember that came from this trauma with my wife is that this idea that at any given time, something can disappear or something can go. And you think about that in life, but you don’t ever think about it until something like that really happens to you. It jars you. Yeah. Do you struggle with that now? And what do you do to try to help offset that?
Jennifer:
Yeah. We still try to look at the positive. We still try to look at him as a normal child.
Chris:
How far you’ve come. Yeah.
Jennifer:
He has graduated to annual MRIs, which is huge. And she said in a couple years it’ll be every other year, which is crazy. And I notated in my book too. I felt like living in the hospital was easier than not, because you always had these people to help you. And now it’s just my husband and I people here in there. I mean, the PTSD is real. If I get a call from school… My son got COVID in February. We kept him safe for two years and all of a sudden we have no idea how he got it. So my anxiety was high.
Chris:
Yeah. It’s just extra… [crosstalk 00:37:56].
Jennifer:
But he was literally fine within 24 hours. He was totally fine, but your anxiety’s higher. Or if he has a stomach bug, we have to be very careful to keep him hydrated because he’s 100% tube fed. So if he has a stomach bug and he is throwing up, we typically have to go to the hospital because he has to get on IV fluids, because that’s the only nutrition he has. So as normal as things are, there’s still options to the rule. So I’m very cautious like, yes, he’s at school right now, so I’m like, all right. We’re good. I always just try to make sure if I’m not with him or if my husband’s not with him… [crosstalk 00:38:31].
Chris:
Somehow there’s a connection there. Something like that.
Jennifer:
… somebody can get ahold of me. And I don’t know if that’s just a… I’m sure it’s a typical parent thing, but it’s amplified with him.
Chris:
It’s its got to be just extra, more than that. Yeah. I have to imagine that. Before this interview my phone was in there and I grabbed it because they’ll typically call me, but that’s just being a parent. But I think there’s an extra layer that is there for you.
Jennifer:
He’s got a feeding tube.. If the tube falls out, if it doesn’t go back in within a certain amount of time, he’s got to go get surgery. So I have to make sure I’m available.
Chris:
It makes total sense. On this show, we talk to a lot of people about the things in life and their business that have run into, that they’ve had to overcome. And every single thing that we’ve talked to and talked to people, not to discount anyone’s struggle, because everyone’s struggle is their own.
Jennifer:
Agreed.
Chris:
And there’s no way to really quantify what that means to you individually, right? This is something on its face that is clearly a struggle that is a very rare one, is a very traumatic one. And so it puts a lot of things in perspective. And I’m sure you’re asked this a lot. If somebody is struggling or they’re going through something that seems really daunting, seems like, I don’t think I can do this, what do you say to them? What are some words from someone that’s so strong, that has pulled through something like this or gotten yourself to this point at least? What do you say to people like that?
Jennifer:
First, you just have to survive the moment, right. You just have to breathe and accept what’s happening and figure it out. If you got to cry, if you have to scream, if you have to shut down for a day or two, do what it is, what you have to do. Then take a step back, figure out what’s needed. And then figure it out, face it, put your big girl panties on and do what you got to do, because you’re the only you’re ever going to have. So how you face that and how you overcome it is what you have to do.
Chris:
You never let anyone’s tell you. Despite how much they said, no, it can’t, you were just like, sorry.
Jennifer:
The worst case scenario… [crosstalk 00:40:44].
Chris:
Until that day happens, there’s no way you’re going to get rid of me.
Jennifer:
Yeah.
Chris:
And I think that’s got to be it, especially with something when it’s like that.
Jennifer:
Yeah. The worst case scenario was never an option.
Chris:
Right. Because in the end, so what? You’re either going to give it your best or you’re going to try everything, because if you’re telling me it’s going to go there, why the hell not should I try to do everything possible?
Jennifer:
Right.
Chris:
Right. What’s the downside to that, right? And that’s what that is. It’s that really strong determination. You got to be able to do it. So I have the book right here. I know you can get it on Amazon. Where else can we find the book for people that are local? Maybe they can find it.
Jennifer:
Yeah. Locally, right now it’s available at Life Made Simple Boutique in Burnt Hills. I am trying to work with other local bookstores, but right now that’s where it is. And then Amazon, of course.
Chris:
Thank you so much for doing this.
Jennifer:
Thank you.
Chris:
I mean, when Sharon here at Overit, she was telling me about this story. I started researching it and I always put myself in these situations. It’s hard for me even to imagine. For everything that you have done and continue to do for your son, it’s amazing. So thank you so much for coming in today.
Jennifer:
I appreciate.
Chris:
No problem.
Jennifer:
Thanks for having me.
Chris:
Thank you.