The Second Support Foundation

Jones Family

The Jones family, consisting of Mike, his son Conor, and his daughters Peyton and Makenna, have been struggling against their unknown illness since 2009.

It's impossible to imagine what the Jones family has gone through. When we interviewed Conor Jones, his love and faith in his family shown through his hallowed face from years of being worn down by illness, fatigue, and life itself.

Interview Transcript Conor Jones January 21, 2016

(In Conor’s living room, where we both sit on an old green couch, his dad upstairs, sisters at school, the cat behind us in the kitchen.)

Conor: Well back in 2009, well I didn’t get sick until 2011, but back in 2009 I remember, vividly remember my dad just start to get weird symptoms. The doctors thought he had lupus up in MN. But then he just started getting really weird muscle symptoms and just vein problems, and things just weren’t like they were before. And I noticed that it really hindered what he did and what he could do. And then, I guess. He just didn’t feel good. And I remember one day I came home and he was painting, and I was about to go to a baseball game, and I remember told me he had blood come out when he was on the toilet, and that was like the weirdest thing ever. Like internal bleeding is crazy. But I remember playing baseball that day and it was just the weirdest feeling because I just found out my dad had internal bleeding and here I was playing baseball. And it was just…

Austin: I understand, it’s like all this stuff is going on and you were...

Conor: yeah just playing baseball. I was just thinking about him and I can’t remember how I played but I just remember thinking “My dad is in the hospital right now” and I’m pitching. But he went to the hospital, and that was actually his second time having Ischemic colitis because his, our veins shrink in the colon. But um, that was the second time, the first time, he painted our room and had it. But then… yeah it was hard just seeing my dad, my dad going through all that. At first we thought he had lime disease, maybe he got bit or something

Austin: yeah maybe just something weird that he caught...

Conor: yeah just some weird kind of rare disease. Idk it was just really hard to see him progress to the point where he couldn’t paint like he used to, and he couldn’t really coach baseball.

Austin: Yeah, was it pretty fast?

Conor: yeah it seemed so fast where he just couldn’t do stuff. But that was 2009 into 2010 and 2011. I remember in June 2011 I got a cut on my foot, and I didn’t notice or realize anything of it, and all of a sudden, since I’m at Kings Island with my cousins, and I look down and my foot is 4x the normal size. It’s just so swollen and it’s just so bad. Um, but then it hurt like crap to, and it was so swollen, and it looked like I was the Hulk. And It was bad so I went in the hospital the next day, and the doctor said I had cellulitis in my foot, which is a pretty dangerous infection which could into a staph infection which would turn into Sepsis, where your body become septic and would mean complete shutdown and you’d die. Luckily it was just cellulitis, but its still not normal to get at the age of 14. But I didn’t think anything of it, I didn’t think I was getting sick like my dad. Then later that year, like September-ish, I got bit by a spider, at least I think it was, it looked like it on my arm. And I noticed it started to swell up, I thought I was having an allergic reaction to it, then it, it wasn’t just a reaction cause it swelled up to the size of a softball, it was huge. I went in to get it cut open, and it ended up being a staph infection. Which isn’t normal to get when you’re that young. I actually still have a scar from it haha. But yeah then I still didn’t think much of it, but then I got a prostate infection later that month. And I remember the time line is because it’s almost like pre-9/11 and post-9/11, ground zero for me, from being healthy to sick. I remember not being able to play baseball for a week because of the staff infection, and I remember going back and they called me spider bite, haha that was my nickname, spider bite. But I went in to go see the doctor later and the doctor, well the doctor didn’t want to run tests on me because he told my dad, “Just because you’re sick doesn’t mean Conor’s sick” and he just wanted to get my routine blood check. So the doctor was being an ass to him, but then my Dad got the nurse practitioner to run the test, but then it came back that my white blood count was super low, my nutrifills were really low, I would get a bad infection from pretty much anything. But after that, I ended up getting the bone marrow biopsies, they started to happen, I’ve had 7 and nothing has come from them. I don’t have enough cells in my bone marrow, and no cancer or anything like that, but it’s not normal, but it’s not as bad as cancer, so they don’t know what it is. But I remember telling my dad after I got sick, once I found out I was sick like him, (long pause), I told him that maybe I got sick so then they could figure out what was wrong with my dad, so maybe it was God’s way of helping us out, like maybe I got sick so the doctors could help him. He’d get his answer, I’d get my answer, and we’d be fine, but that didn’t happen. Then it started to progress, I started to lose muscle, I have pretty much all the symptoms my dad has other than ischemic colitis, luckily. But then my sister, my youngest sister Makenna gets sick, we notice she started getting a bunch of headaches. We took her to the neurologist, and she had a tumor in her brain. First the doctors missed it, on the MRI. And, my dad will have to explain this more, but yeah they missed it, and found it later when they went back and checked the old MRI, like a year later, and it was just a big bunch of bullshit.

Austin: Was it the Doctor’s not doing their job?

Conor: Yeah doctors just not doing their job, they didn’t see what they were supposed to. But then my sister Makenna getting sick, that was hard to see because I, um, seeing my dad get sick was really, really hard. Me getting sick, I mean, I figure I can handle it because it’s me and I know exactly how I feel mentally and physically so I know I can handle it somewhat, but, but seeing, I feel hopeless and helpless when I see my sister and my dad get sick and I should be able to help them but I can’t, and seeing the doctor’s just not get what we have is very, really frustrating cause I can’t, I can’t help them, the doctors can’t seem to help us, they keep trying nothings working. It’s hard dealing with genetic stuff because it’s not like “oh you have cancer” or you just have a brain tumor, I mean I could handle those, you fight those and you win or you lose, with this I don’t know what to expect. With my dad, like for all I know my dad could drop tomorrow, same with me with since recently they found I could die of a heart attack at any time from anything because of this gene, they don’t know why though or that much about it. So it’s, it’s really hard. But anyway back to my sister getting sick, it was really hard seeing that, just cause like I knew there were things I wanted to do that I couldn’t like not being able to play baseball or being able to go to school. And not being able to just be a normal kid, like I always known as the sick kid and all that. And I mean I couldn’t graduate because of the disease, so yeah. But it was hard to always be known as the sick kid, I mean I didn’t feel, like not really left out, but I just wasn’t at school, and it was like whenever I could go to school was the first day. I mean I don’t feel like, I never had any issues getting along with people, but I just didn’t feel comfortable at school because of the disease. I mean everyone would look at me and just be like “well he’s finally here” and just shut up. But for Makenna, I mean she,

Austin: Is she missing a lot of school?

Conor: Yeah she’s missing a lot, not as much as I was, it’s not hitting her as hard as it hit me, but shes having a lot of muscle issues and tumors.

Austin: And what about Peyton? Is she missing a lot of school?

Conor: She’s missing some school, but it’s, it’s like, she, she has a lot of vein problems, and rash type issues, more like immune system reactions then muscle and some of the other system issues my dad and I have. But no the one that killed me the most was seeing Peyton get sick not because I like her more than Makenna, but because she was always the one that was the most afraid to get sick. When she thought she had stomach issues she would stay up crying at night because she didn’t want to be sick. Like the thing she feared most in life was getting sick. She could see what it did to my dad, and what it did to me, and what it did to Makenna. Thank God she isn’t to the point where my dad and I are, and Makenna isn’t to the point where my dad and I are, because at least Peyton can still go to school and can still do those things, and not worry about getting infections when going out to places and doing things. Idk it’s just… it’s just hard to see. It felt like we were falling like dominoes, I mean my dad got sick then I got sick,

Austin: Wow that’d be pretty scary to see

Conor: Oh yeah it was. Like in 2011 and it just keeps progressing. I mean you can see me now, I weigh 135 and I’m 6” tall, I shouldn’t be weighing that much at 6” tall. But yeah, another thing that pisses me off is people look at me and they say, “Oh you look good” look at how I looked when I was 15, I actually looked healthy, now people don’t know how [unhealthy] I look. I mean, it’s just hard to handle sometimes. Yeah not knowing what’s going to happen is the hardest part. I can deal with not being able to do things, but the part that sucks the most is that, not knowing where it’s going from here. I mean a tumor could turn cancerous, my heart could just stop, I could end up paralyzed like ALS. I mean if I could sum it up in one word, it’d be scary. Scary or frustrating. It’s not like I can take a few pills and say, “Ok, now I feel better”. I mean for the pain I’m in, I take Advil. It’s not like I can do anything. I’ve tried to work out, tried to be healthy, but when I do I start to feel bad, and if I gain muscle, I actually get sick, like the flu or strep throat, because my immune system goes down, and I end up getting sick, and losing any muscle I gained, and getting back to where I am now. It’s not fun going in the shower and seeing a 12 year old kid’s body with an 18 year old face. So yeah, not sure if I really missed anything or what.

Austin: You’re good, although I know recently you got some results from some test?

Conor: Yeah the genetic DX test? Those aren’t really answers, there’s not treatment, no cure, they just know that some genes are different, they didn’t find anything that caused most of the stuff we have, like our muscles deteriorating, but we found out that some of the problems are genetic. We found that Makenna, my dad and I have this gene that…

Austin: But not Peyton?

Conor: Not peyton, she didn’t have any of the gene things come back which was weird, but they didn’t look as hard for her I guess, because it was only run on me, but everyone gave blood for the test, but they looked to see variations that we all had. But the reason nothing came back for Peyton may have been because since she didn’t have a lot of the symptoms we have, they didn’t really look at hers like they did for us. Anyway they found 3 big ones, but they don’t really tell us why, or how, or if there is anything to do about it. We have some genes that are like ALS and some other ones. I mean basically our immune system is boofed. And that might say why our muscle is deteriorating. Another one is why we get all the tumors. And our tumors have a much higher likelihood of turning cancerous. So yeah, that’s that. When you interview my dad he’ll give you a lot more of the details, since he’s much better at that and he knows more about it and all that.

Austin: I'll get that later, thanks for sitting down with me though!