0:00:00 – Speaker 1
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0:00:35 – Speaker 2
Today on the show we have a very special guest. Lindsay Davis is here with Jackson’s Frog Foundation. Lindsay, thanks for being with us. Thanks for having me today. Mandy, she’s a friend. We go back I don’t know years. Our kids were like tiny, right. Yes, yeah, I’m so glad you’re here. Tell us a little bit about your family. I want to dive right into this, so.
0:00:57 – Speaker 3
I’ve been married about 16 years and I’m currently in college and I got married when I finished college. And then we’re just living your typical family life, trying to raise those young kids, and the struggles we thought they were with that but really so minor for what kind of lied ahead for us, and so we were adapting and adjusting and trying to work through all that with our two little ones that we had at the time and we now actually have since had two more. So we have, our kids are ages, are two-year-old, four-year-old, a nine-year-old, and then Jackson, who is now in heaven, and he would be 11 years old.
0:01:30 – Speaker 2
So I’m tearing up just thinking about it, because I have all the images of Jackson in my head.
0:01:35 – Speaker 3
He loved yellow. Yes, loved yellow, bright and cheerful and just like that little guy always spreading some light. Yeah, he loved frogs. Yeah.
0:01:44 – Speaker 4
Well, tell us Jackson’s story, Start from the beginning for those who are not familiar with your story, and tell us a little bit about his life and your family life.
0:01:52 – Speaker 3
So, jackson, when he was around three and a half years old, everything seemed to be normal, as much as normal can be.
With the crazy rambunctious little you know, you got a three-year-old and one-year-old, so normal. And so Jackson started having seizures and within one week’s time we thought, well, this seems odd, I think there’s something going on here. And so they were just like a smaller seizure, but there was something definitely there, went to the doctor, ended up with a neurologist. So on a Friday morning our son is diagnosed with epilepsy. The determining is definitely having seizures. But instead of just going home with the medicine, we need to get him under control. So they send us to go to the hospital, and so we go over to the hospital. We get admitted in and they tell us go ahead and do an MRI just to kind of make sure there’s nothing else going on. They’re usually fine, just procedure. And so we went over there. We did that, and then we discovered our son had a brain tumor, and so what we thought was just we were going to swing by and get some medicine.
We went from epilepsy in the morning to having a brain tumor at night, being admitted into the hospital, and so the struggles all started, you know, right there. So, jackson, they thought we were very grateful at the time. They thought that the tumor was not cancerous, but over a three month period of time he had around 500 seizures and so they just could not get them under control. We were maxing out on different medicines. We were on multiple seizure drugs. Those come with big side effects. If you’ve ever had a kid in your life that has been on those medicines, there’s lots of side effects, some things to deal with. There you’re messing with neurological things and so Jackson bless his heart we just couldn’t get it under control and we had him on so much medicine and so finally the seizures really forced our hand to go in and to do a brain surgery, and when we did brain surgery it was discovered that Jackson had brain cancer.
0:03:30 – Speaker 4
Oh my goodness gracious. I don’t know what that would feel like, you know the doctor coming out and telling what they found. Walk us through that and what the next few days and weeks were like.
0:03:41 – Speaker 3
So initially, jackson’s his surgery, we went to Houston for the surgery. They had a certain machine there I’m not sure now if we want to see an Antonio, but it was a very precise machine and equipment that they had that we would be able to use. His tumor was right by the mobility area, and so there was lots of concern for paralysis, the surgery that we needed to do the surgery because he was at a point where, I mean, there was a time at the hospital where they said, well, how do you just induce him into a coma and tell him we can figure out? And so it was to where we needed to do something, and so we knew we were going to do the surgery, with the risk of paralysis for our son being pretty high. So we went to Houston to get as precise as possible.
So the surgeon came in and they told us how Jackson had come out, how he had given him a thumbs up, which is a huge sign because he could move, he could miss, and so it was a really big thing that he was able to move, and so we were rejoicing in that and rejoicing that the surgeon got it all. But it had come back and the initial pathology is cancer, and we were shocked. We weren’t expecting that. We were just thinking that we were preparing for one road, and in some ways it’s. You know, for me personally, I feel like you know, to have everything at once would have been a bigger blow and a lot harder to process. I think God knew that I needed steps.
And so I needed to go from epilepsy to brain tumor to brain cancer and those are the steps that we had and I’m grateful that all those seizures that I hated so much, that forced her hand at surgery and I prayed and prayed. Why doesn’t God intervene? And now I look back and that was the intervention is to force us to do this surgery. I want to get this out and I feel like to give Jackson then a better quality of life and time with him. So that was the diagnosis. It’s as awful as you’d imagine finding this out. I didn’t even realize there were all these different types of brain cancer. I didn’t realize the differences between chemo and radiation. I was basically completely naive to the whole cancer world. I mean, yes, it had hit people I knew, but you know they were a lot older and it wasn’t a thing that I had been directly involved in being a caretaker by any means in this situation, and definitely not for a child.
0:05:40 – Speaker 4
So you find out he has cancer, brain cancer. They removed it. Were they able to remove it all? What was the result of all of this?
0:05:47 – Speaker 3
So they did. They were able to remove it all and but based on that we initially we got him right away into a treatment plan and we actually did a treatment. It was a combination of we contacted hospitals all over the country. So, jackson, there was no advantage to take him to somewhere outside of Texas. But we did find there was a St Jude trial that was also had pieces that were part MD Anderson and then implemented through Texas Children’s. So here we thought well, gosh, you know, this is here, it is, here’s this trial and it has three of the top hospitals are working together, collaborating for this.
0:06:19 – Speaker 2
So it was the best of the best that was out there.
0:06:21 – Speaker 3
I mean it was it was the best of the best. But even you know, looking at that, you know you, just you try to cling to that and you try to just move forward and you’re on this map and you’re on this plan. And so we jumped right into Jackson’s did we were told that if it came back that there had been no cure for, like if it occurred.
So, we just wanted to hit it with everything we could Sure the first time, and yet you’re signing away like a piece of paper and it’s like the side effects aren’t like these ones on, like the little packet of pills Like a rash.
Yeah, it’s not like that, I mean no, no, like the, the side effects that are common are, you know you’re looking at, like heart issues, hearing loss, you know, infertility. So here’s my kid. I’m trying to save your life and I’m signing away that you will never have the ability to have a child. And it just seems so minor at the time because I just want to save your life, yeah, but you know, secondary cancers are very common. It’s like you, you look at all the and it’s like it doesn’t matter All those things, I’ll take them if I can just have my child. Yes, here, yes, and so we jumped into radiation. He had full brain and spine radiation. He had a high-dose chemo with stem cell rescue, which is like the bone marrow transplant unit. So I’m completely wipe out your immune system to nothing and then have to like re boost and build that back up. So we were. We had to move to Houston for about eight months, and so we did that and then came back to San Antonio, but pretty soon after Jackson’s cancer had already occurred.
0:07:39 – Speaker 2
You know, watching you go through this. I, you know, didn’t have. We weren’t super close to where I was all walking alongside of you, but I saw it on social media, you walking through it and staying in touch with you that way and through prayer circles. You know we were praying for you. I just couldn’t grasp, first of all, that this was happening to you Some, but to a kid that I knew, you know, like you, just it’s hard to even grasp.
But then I saw Jackson start collecting toys for kids on his on his unit and this became like his thing that he did. He would take, he would bless other kids with toys and it was so amazing to me to watch y’all go through this and I know behind closed doors it was probably horrible and pain and crying, but you all were like even in the midst of it you were like trying to bless other people through it and it was just so inspiring to me to kind of see that Tell us about Jackson and kind of his heart for that. Because I also remember at his memorial service there weren’t flowers but there were mounds and mounds and mounds of toys to be delivered to other kids, you know, who were struggling, which I’ll never forget, that site.
0:08:51 – Speaker 3
And that was just so, jackson, that that completely just encompassed him. But I was pregnant with him. We didn’t figure out the gender, we decided to wait, and so we were so fascinated seeing the heart at an early stage, we nicknamed him the heart, and that was his little nickname and it just we had no idea how big that kid’s heart would be and who all it would touch. And so I think for us it would have been very easy to have been so consumed, and at times we were so consumed and overwhelmed by ourselves and our situation and just in survival mode, and we didn’t always do things the right way or make the best choices, of course. But you know, who led the way better than any of us was Jackson. And so with Jackson he just always I mean, here’s the kid, these kids go through more than you can imagine I mean Jackson’s, here he was. He turns four.
In this process he’s swallowing thousands of pills, he’s been through anesthesia over 50 times. Like he just going through all these different things. And it’s like carrying around a little emesis bag because he just got sick so often, like that was just like a lovey or like a regular thing. Like you carry a backpack, you carry a purse. If you’re a girl, you’re a cancer kid, you may just walk around with a little bag in case you get sick, and so it was just his way of life. He didn’t let him stop him one bit that the inside of Jackson, his scans, never matched the outside. He just always that’s what brought him the most joy. And they say giving is the best medicine, and for Jackson it just really was. He’d always find different ways. He’d want to when he’d get better enough that he wasn’t like had to be confined in the bed or confined in his room. He wanted to go out and do stuff for the other kids.
0:10:27 – Speaker 4
Amazing. I remember our group, our Mops group, making blankets because he had said that it was cold during chemo and he wanted blankets for the other kids and I never met him. I didn’t know you and I was so moved by the thoughtfulness in the moment, like you’re saying, thinking outside of yourself, as your whole world is being consumed by this. I can imagine.
0:10:47 – Speaker 2
I mean, Jackson is a celebrity where we are.
0:10:49 – Speaker 4
Like people know him. It’s true.
0:10:50 – Speaker 2
When I wear my team Jackson shirt like 30 minutes from here where I live, I’ll get stopped.
0:10:55 – Speaker 3
Oh, you know, jackson, you know the front foundation Like it’s time to know them.
0:11:01 – Speaker 2
Like he’s got a reputation.
0:11:03 – Speaker 3
Even with the blankets, like that was the thing. The hospital, the Proton Center in Houston Because a lot of places already had blankets and some different things, but the Proton Center did not have someone there. It’s a separate part of MD Anderson, it’s actually down the street and so people give lots to MD Anderson but since they’re kind of thinking of it as like a satellite location, they just weren’t, that wasn’t passing through to them, and so that was something that we identified. Well, we were through treatment there and so at the time that was a need that they had, and so they were wanting some blankets, and so Jackson got so into that and loved helping make those that even when he was on hospice care and he had lost his mobility and his vision and so he was really like you had to carry him into the living room to set him down on a special little chair and he couldn’t see anymore. But one night he was chanting blanket, blanket.
And so I brought that little dude one of those blankets and he couldn’t see. So I had cut holes where so he could feel along where the hole was, cause he couldn’t see. He’d feel along for the hole and he’d push the little string through and he’d feel along for the hole and he’d push the string through. As he, you know, here he was like his last weeks and that’s what he wanted to be making blankets for other kids. He wanted to be doing stuff for other kids and so some of the things that he founded and started and a lot of the things of kind of where we landed and things we do today come from ideas that Jackson had and needs it, but then identified from having walked this path.
0:12:23 – Speaker 2
Yeah, so he passed away near Thanksgiving right.
0:12:27 – Speaker 3
Yeah, so what I say was very appropriate that Jackson would go to heaven on around a holiday, that you give thanks, and it’s something about being appreciative and grateful for the things you have, because for Jackson, even though things we based so much of our joy based on circumstances and for Jackson it was even 24 hours before he passed away he had a smile on his face and so, looking at all the things that he was going through, it just was amazing to see that he could still be grateful, he could still find joy. And I mean I tell you that’s a struggle for me and I think a lot of people is. We look at our circumstances or we have a hard time seeing the good, finding the good, chasing the good, pursue the things that are joyful and realize that if we put our joy in the right place and for Jackson he just had his joy in Jesus and if you put your joy there and you let your joy come from there, then other people in circumstances and his conditions, as he had different deficits, that didn’t matter.
0:13:26 – Speaker 2
Well, and you know, kids learn from watching us and just hearing you talk about how God provided these little things for you. I’m just looking at you in awe because I think I would be like cursing God and be like, why me? And this is awful, and you are the God of the universe. You could have stepped in here, you know, and I’m sure those emotions have been had. But you’re finding where God has walked you through this in a way that you could handle and process it and I just I think that just speaks volume about your faith and your relationship with Jesus. I really do, and I’m sure that Jackson was the person he was, because he saw that modeled in your home, even though you probably didn’t even realize you were doing it. You were finding the joy in the little things we’re work in progress.
0:14:11 – Speaker 3
I think Jackson might have let us more than we did, but when we try, you know he was born a little different. He was born special, but we’re all trying.
0:14:22 – Speaker 4
Yeah, you know, as you’re explaining all this and all that you had to process, I think about you were not the only people in the household, and your whole world all of a sudden was turned upside down. Attention, time, energy, emotions everything changed in a moment, and so I’m wondering if you can explain to us a little bit about what those conversations look like with your other kids and between you and your spouse as well. How do you help them process?
0:14:45 – Speaker 2
this. Yeah, it’s just so much to process as an adult. Because, you’re having trouble processing it. Yes, right, and all these right.
0:14:52 – Speaker 3
And so this is an area that I’d say, you know, people always look at the patient, everything that the patient’s going through, but cancer it is so hard on the siblings because, and for the whole family as a unit, because all of a sudden now, no matter how you do it, it’s like it could be, you know, some of the family had to travel for treatment and some of the spouse and the kids had to be left behind because you had to make whatever could work happen, and sometimes it’s. You know you all stayed here, but you’re gone at the hospital all the time and so it’s. You know there’s a lot of things going on there. The parents are trying to, you know, save a child’s life, and so that takes a lot of energy and time and you don’t mean to be not showing as much love and support to the one that’s healthy, but just by default you got to be at the hospital. Yeah, absolutely, absolutely. So it’s just a really hard situation. But for the siblings, that’s a big hit is that they’re all of a sudden trying, you know, their world has been rocked too. They’re concerned about their sibling, they’re concerned about, you know, their parents and where you know they’re, you know, wanting to figure out that, these things out.
So for us at the time we just had the two children we just had Jackson and then our daughter, and so there was, you know something, they were very young, and so a lot of this stuff comes down to age and how you have these discussions comes down to an age piece, and so there is a really cute little video that I think does a great job. That’s by the American Childhood Cancer Organization and if you go on their website, it has different resources of lots of things. They have books for different ages, they have this video I was speaking about and they have even books for, like, a sibling. That is how to talk to that sibling then on it. How about their brother?
sister being diagnosed with cancer, and so there’s lots of different resources. There’s even some in Spanish oh, that’s great and Texas, that is, you know, very useful. And what is this organization again? So the website is accoorg, okay, and the video that I’m referring to, that’s great for younger kids, is called Paul and the Dragon, and I’ll tell you this, even though and it shows this, you know, kind of walks through in illustrations of you know, the little boy is, it shows the dragon. The doctor is kind of you know, this is this dragon and you have this dragon inside of you, and then it has the things it shows little things come in and they’re like these little blue blobs and then there’s like a chemo one, and so it’s how the medicines are trying to like fight the dragon and ultimately the chemo get in there and then it walks through some of the like side effects of the kid make experiences, but all in like a very good kind of friendly way.
Now here’s the thing. It is done so well, but this is where, at the end of the day, you just gotta give yourself grace. Whatever you’re trying to do, you’re just trying to talk to your kids and do what you can. So recently a mom shared with us how, you know, we were at a camp that we sponsored for families that lost a child to cancer and we were talking a little on this topic and she was saying how they had done this, paul, on the dragon the first time, and so when her son’s cancer came back, he was real young and she said you know the dragon, and so she was just trying to figure out. The dragon had a baby and her kid was like, oh, how cute a baby.
0:17:58 – Speaker 4
And she’s like no, Ugly baby, and so I think you just got. It’s like anything else in life you know we’re just trying to figure out.
0:18:05 – Speaker 3
You gotta give yourself grace, I mean, I’ll say, and you gotta realize too, for kids like they just they bounce in and out of stuff totally different from us. So I’ll say with our kids, with Jackson, we actually did not go into a big talk of like you have cancer and this is what cancer is, and this is the things. Because really at Jackson’s age I mean he was around three and a half when things started he was about five and a half when he went to heaven and we just felt like for our family we definitely talked about him being sick, we talked about different things with that, but whatever name you wanted to put on, it didn’t necessarily matter to our family. It was just more so. Like these are things and we’re getting better now. The word was used in front of him.
But where it gets tricky too is unfortunately in society. People like to project onto others and so what we found to be tricky is and I know this isn’t uncommon, unfortunately, I hate to say this, but people would find out, you know, oh, your son has cancer, oh, my uncle died of that. Oh, my grandma died of that, oh, and it’s like they immediately go to, first of all, an adult situation, but second of all, my kid is standing right here and they just don’t even realize it’s like they want to all of a sudden, and I think it’s just like a lost for words moment and they don’t know what to say.
0:19:19 – Speaker 4
They don’t know what to say. They don’t know what to say.
0:19:21 – Speaker 3
But let’s just back up a minute. If something that you’re gonna say is not projecting a positive, let’s just keep it in.
0:19:29 – Speaker 4
I’m gonna age you If you don’t have anything to say.
0:19:33 – Speaker 3
You know it’s like this is definitely one of these ones. I mean, that’s a big thing to throw out there, and so we found that that was hard, but kids will go in and out, and so, even with our daughter, I’ll tell you things. Obviously our conversations go a little deeper and we won’t get into all this today, but having lost a child, there were things and stuff with that, and so as we got towards the end with Jackson, we felt like we need to tell our daughter something more than he’s just really sick and we’re going to these doctors, and so we felt like, I mean, what if he’s not healed here on earth and he’s healed in heaven? We need to, maybe.
So when he was on when he was on, when he was on hospice care, we just felt like we didn’t want to look back and her be like well, did you ever say, or did I even know? Or?
I don’t know, and so you don’t, I don’t know the right or wrong way. There’s no manual for this stuff and so we decided to talk to her some. So she was, at the time, you know, three and a half bless her heart, and so you know. So we’re trying to talk to her about you know, just, you know we’re still praying for Jackson to be, you know, healed here and that God can do miraculous things. But sometimes God heals people, so he has them come live with him and he heals them that way, and so you know, so we’re trying to have this talk with her. And you know I won’t you know the details of the different things, but I’ll just tell you, here we are, we’re feeling like gosh. We’ve really put it out there. We were all worried about having this conversation and she goes. Can I go play now?
0:20:59 – Speaker 4
Yeah, yeah, and we thought oh my gosh, we totally like we.
0:21:03 – Speaker 3
she didn’t get it, she missed it, but you know what she did.
0:21:06 – Speaker 2
She was absolutely that night.
0:21:08 – Speaker 3
That night she wanted to. All of a sudden, the hospital bed was pushed up against our bed and she started sleeping in what we’d call the crack.
It was literally a spot between where the hospital bed and our bed would meet, because she wanted the closest spot to her brother and she would go and she’d spend more time in there. And so even when you feel like gosh, I tried to put out there, like I think they, I think they missed it, it’s like just just have hope and faith that something, something there, was absorbed. And their minds just work different than ours, they will go in and out and even with like a grief piece, you see it, they go in and out. They can be so low and five seconds later be on top of the mountain.
0:21:43 – Speaker 2
It’s just how they work. So tell us about. You formed Jackson’s Frog Foundation. Tell us all the work you’re doing, how we can get involved, how we can serve. I mean I know my kids have come to a few events where we’re packing things together for you and you have it all so organized and you’re like okay, kids, do this, pack it up, we’re gonna send it off to these people. Tell us how we can get involved.
0:22:04 – Speaker 3
So there’s different ways. I think sometimes there’s some of our things.
It’s hard because the kids are amino compromised that we serve and so it can’t always be a thing where you can go out and actually directly serve and interact with the kids and so, like Mandy is saying, there have been times where we’ve done things where it’s like you come and you help put together, like the smile bags or the things that we’re gonna then pass off to the hospital. But you know, we’ll take care of passing them off. We do have things sometimes especially for, you know, older kids. We just did our fall festival this past weekend and we had 117 kids come. That includes siblings, and so with that we have it’s a big private fall festival just for these families, and so it’s a wonderful event.
We do, you know different? You know carnival booth type stations, prizes, a prize walk. There’s a pumpkin patch, they get a picture with a professional photographer. There’s, you know, a face painting, balloons. You know all sorts of different things that we had there. We had the Incredibles come, and so it’s always a big time for them, but things like that. Sometimes we do have events where we need some hands-on volunteers, and so that was a perfect example of you know. Sometimes we do ask for some volunteers for some different events and so I think, just staying in touch with us to see kind of what’s coming up, if it’s something that your family has an interest in serving. You can always reach out to us, and I don’t know.
0:23:19 – Speaker 2
The website is a great resource. Right, it’s Jackson’s Frog.
0:23:23 – Speaker 3
Foundation? Yes, and this is the J-A-X-O-N-S Jackson’s Frog Foundation, or you can do Jackson’s Frog Foundation at yahoocom to email us and so. But a big thing that a lot of people do just on their own is we’ve had, you know, multiple kids that have just said hey for my birthday this year, or not even for a birthday. Just, you know, I want to go sell lemonade this weekend and I want to use the money towards something for the hospital kids or the kids with cancer.
And I, just I encourage you. There’s such a big piece of kids helping kids that we sometimes miss in society.
It’s like Jackson, proved that there’s no age minimum to kindness and doing things, and so there’s something that all kids can do and so, whether it be something that it’s, you know you’re helping them to do something like that to raise a little money. And then I say, take it a step further. So you know, my daughter, one year she wanted to do this, she wanted to raise money for, you know, the cancer kids and for Jackson’s Frog Foundation. But we actually took and she did the stand that weekend. She made the money and then I took her to the store to buy prizes for the prize walk and so she got to actually see cause she was at that fall festival. She got to see the little girl go up in the little wheel chair and cling on to this doll that my daughter had picked out.
And that she had raised the money and paid for, so she had ownership of that whole process. So I think for your kid it’s not just the like raising some money and doing something, it doesn’t have to be a big thing. I mean, look, glow sticks are great, they’re the Dollar Tree.
0:24:48 – Speaker 2
You know, it’s like the little things.
0:24:51 – Speaker 3
So your kid doesn’t have to make that much money to go down to the Dollar Tree and pick out some different items and know, hey, these are going to you know kids at the hospital.
0:25:00 – Speaker 2
So I feel like you have. You’re so inspiring and the thing is, you don’t realize it. You’re so humble in your walk. I love that, which is amazing. I always think of Deuteronomy 23.5. God turned the intended curse into a blessing, and I mean cancer is definitely a curse, there’s no doubt about it, but to see you taking this awful thing that happened, blessing others with a smile on your face, it’s just, it’s inspiring and we can all learn from it. So thank you for sharing your story and being with us today. Thank you for having me. Thank you.
0:25:34 – Speaker 1
Thanks for joining us on nextTalk Radio with Mandy and Kim on AM 630, the Word. You are not alone trying to figure out how to parent in this digital world. We are here with practical solutions to help you. Follow us on Facebook, Instagram and Twitter. Find our free video series and podcast at nextTalk.org. Are you ready for the nextTalk? We’ll see you next time, Thank you.
Transcribed by https://podium.page
