Brian Loeding: Hello, I’m Brian Loeding

Lauren Loeding: And I’m Lauren Loeding.

Brian: We met over ten years ago now in a bar called Features in Naperville. We didn’t know it but we actually went to the same grammar school together after our first date. Actually, your sister was the starting point of our conversation. We just had a really good time from the very beginning. She would laugh at a lot of jokes I would say and I knew she was a keeper by then so.

Awesome, so tell me about Briana.

Brian: Briana, well she was our eight year old she recently passed in August of 2018. [She was] One of the loves of our life. Brandon is another one, [he’s] our little son. [Briana] really was the first girl in my family, which was very special to me. She was diagnosed with cancer in October 2017 – osteosarcoma in her right tibia. It was a very challenging ten months. She, I forgot where I left off. Had she passed?

How do you know she was sick?

Lauren: So late last summer she had a little bit of a limp going on, so we did take her to the orthopedic doctor. They did an X-ray and everything looked fine. So we kind of said, “let’s keep an eye on it and, you know, to wait and look for a few weeks to see if the issue goes away.” And so it didn’t, so about two weeks later we took her in for an MRI. That was a Monday, by Tuesday we got the phone call, [then] by Wednesday, we were at the University of Chicago seeing the orthopedic surgeon, and by Thursday, we knew she was diagnosed with osteosarcoma.

Was she in any pain at that time?

Lauren: Kind of, with the symptoms of osteosarcoma [it varied], she would be [at times], but it would kind of come and go. So [symptoms like] limping, pain at night, those are the classic symptoms. So it wasn’t terrible pain, but it would be something that would come and go, but bothersome enough that we want to get her checked out.

Brian: We had to cancel vacation plans. We originally wanted to go to Disney. Lauren was going to work in Orlando. We tried to coordinate me and Briana meeting her up out there and we got to a point where Briana couldn’t walk anymore so [on] the last day or two before the flight, we had to cancel everything. And I think it actually went all downhill from there.

How did the treatment start? What did they do in the beginning?

Lauren: So first, she had a surgery to get the port placed, that same day she started chemo. So for osteosarcoma, it’s a 29-week program – you do 10 weeks of chemotherapy, surgery, followed by another 18 weeks of chemotherapy. So each time we would go into the hospital since she is a pediatric patient, we’d stay for anywhere from 3 days to 5 days, depending on the chemo treatment. She did have side effects: a little bit of upset stomach, [and she would feel] weak.

Brian: The chemotherapy she has, we call it medicine, to not beat around the bush here, it’s poison – it has to kill the cancer but it [also] kills her body. It’s very dated, it’s about 30 to 40 years old. There’s a lot of drugs given to help protect other organs [such as] her kidneys, her heart, her brain, and sometimes it just doesn’t protect all those. You just don’t know long term what effects she’ll have. It definitely affects the immune system – wipes out your white blood cells, your red blood cells, your platelets. Every time [she received treatment], she’d get a combination of two drugs called CISPLATIN and DOXORUBICIN, within a week she’d be wiped out completely. You get what’s called neutropenic, [a condition] where you can’t so much as get a virus or get sick because it really could kill you at that point in time. Every time she got those drugs, she’d reach neutropenia, [where] you have to go into the hospital. Every time, every round she’d get those things, it would be a three-day stay, then the next time a five-day stay, up to the point where it’s nine days staying in a row. She was miserable, she had mouth sores, and by the end of it she had lost 25 pounds, which is significant when you started out at 75 pounds. So it was a very, very traumatic ten months.

Before this happened, did either of you know anything about pediatric cancer?

Lauren: Honestly not a ton. I mean, you see the commercials on TV. I don’t know that we knew anybody personally, and we certainly didn’t know the scope or the severity [of] what it does to families. It kind of turns everything upside-down in terms of your ability to work, going to school, kind of do anything, it all just focuses on her care and it becomes like a 24/7 job.

Did either of you have pediatric cancer in your families or your family tree?

Brian: No, not at all. And being naive, I guess, you see some of the commercials, maybe like St. Jude’s, and you think like, “Oh! They must have something in their family,” and I think being on the other side of things now, you do still see that, someone thinks that we have a genetic problem…we’ve gone to a geneticist, … but there are no signs that we have anything, you know? There isn’t a smoking gun. There isn’t an answer for us. We haven’t gotten far enough to pinpoint what happened other than bad luck for Briana and that’s the sad part…that’s just the diagnosis – it’s just bad luck.

Before this happened, was there ever a sign that Briana was sick or different than any other child?

Lauren: No, she was completely healthy. We probably went to the doctor once a year for her well-child checkups. Beyond that, like nothing beyond a skinned knee – she was in perfect health.

And did you ever have any issues or concerns with Brandon?

Brian: Genetically, or?

Interviewer: No, just has he ever been sick or anything unusual?

Brian: No, we figured we have normal children if anything they’re gonna get the flu, they’re going to fall down, scratch their knee, maybe have a broken bone in their life – nothing to this extent of bone cancer. It’s a shock to any family I think.

Before this happened, did you know anything about funding for pediatric cancer or cancer research? Were you fluent in that subject at all?

Lauren: I was not, I certainly wasn’t aware of the 4 percent that’s given towards pediatric research. Just to know that it’s incredibly sad that we don’t put toward the research what we do for adult drugs and adult therapies, but kids, the saying is like, “worth more than four,” because certainly in the past few decades, they haven’t done, there’s been minimal improvements in terms of chemotherapy drugs and therapies available to children.

Brian: I did talk to a family member about Briana’s cancer and prognosis. Maybe because they’re misinformed, like maybe you are if you’re beginning all this, [they said] “Oh, they’ve come a long way with cancer treatments!” Well, they have; breast cancer, I mean people still die but there’s a lot more treatments and there’s a lot more money that’s raised there, and you only find that out once you’re in a specific cancer and you are fighting for specific cancer, osteosarcoma, in the pediatric group sarcomas or other cancers, you are just fighting for dollars and why hasn’t anything changed in 30, 40, 50 years why is it such a barbaric treatment. That’s why the parents before us and the parents after us, we’re going to continue to fight to raise funds and awareness because who else is going to do it? Unless you’ve been affected by it I suppose.

And I assume that both of you had great insurance or decent insurance that that wasn’t an issue in Briana’s care?

Brian: So we did have good insurance – deductibles reasonable, out-of-pocket was reasonable. Not everybody is fortunate enough to have that. People donate a lot of money to us because they don’t know what it ends up costing families. We were fortunate to have insurance. To date, I think I would estimate Briana’s bill and what’s been billed to insurance is 1.8 million dollars over the course of 10 months. Now that bill is what’s been settled with the hospital and insurance companies, the doctors, I don’t know that number but I know that number is inflated on purpose to make up for other areas. You know, pharmaceutical companies need to make up money for R&D work on one particular drug so they’ve got to over charge, those who are insured more [are more secure than] those who aren’t insured. Definitely, the cost… it’s a lot. Even the one-off stuff you don’t realize, we needed extra beds in the house for grandparents to stay in or a new twin bed for Briana and a tent to make things more comfortable for her. We needed walkers, we needed a wheelchair. We needed a lot of things, a chair for the shower, things you don’t think about. She lost a leg, so we had to accommodate her. We did everything we could to give her somewhat of a full life still. There are a lot more costs than go in.

Lauren: Yeah, and with insurance though… a lot of times one of the parents have to go off of work, quit their job or at least take an extended leave. The stays at the hospital would be days at a time. So we would take shifts, but a lot of times one parent has to stop working just to be able to take care of the child. This would have a pretty large financial impact.

And I’m correct in saying, when you take FMLA, that gives you the time off and the ability to go back to your job, [but] that does not pay you during that time, correct?

Lauren: Correct. FMLA just ensures that your job is secured so that when you’re able to come back after the three-month time frame, your job is still there. They do not pay for your time. We both took FMLA. It definitely has an effect on your income. But I think in a lot of cases, one parent actually quits just because it becomes too much.

Brian: Also, we’re fortunate enough to both have great employers that had paid us throughout treatment. We were able to give whatever percentage we could of our time, whether it was in the hospital or home when we were, and they continued to pay us. That’s not… that’s not common. I mean I can tell you that when you’re down on one income, you’re really scratching for bills, and if you have insurance that’s not as good, I mean… you’re in trouble. We were fortunate in many ways for all the help that we got.

But you never felt like you had to make a decision that we can’t do this because we can’t afford it? There was never that in her treatment, at least. You were lucky that way.

Brian: Yeah, because our insurance was good and we were paid by our employers.

Can you tell me something a little bit about what the emotional rollercoaster was like for the two of you during the process that since the diagnosis?

Lauren: It’s definitely a shock to see your completely healthy happy child diagnosed with cancer and going through chemotherapy treatments, just with her having no energy and no ability to eat at times. You know, it did affect her mood. But she did certainly I think, she always tried to make the best of everything, even her hospital stays. We’d do crafts and painting. We would try to keep busy, but it certainly challenging to be stuck in those four walls for days at a time. Certainly, through about her midpoint in therapy, she did have surgery. She did have her right leg amputated through the knee. So emotionally and socially, there’s a lot that goes into that. For her, going back to school. So all those things together, it was just a lot of changes for her, being 7 – 8 years old at the time, to deal with these huge, impactful changes to her, you know, aside from just losing hair and all the things that come along with chemotherapy treatments.

Brian: I can definitely say that it’s a rollercoaster of emotions from the very beginning to the end. You go back and forth like you are in a very scary situation, the same time you to keep moving, you keep planning, make her life as easy as possible. Less pokes, the medication, keep an eye on her. It’s definitely, you just keep grinding and you live throughout this. You try to make happy moments through all this but at the same time, you’re torn between  you’re scared about losing your child and all the pain she’s going through. Even at the end of it, I was very proud of her, I was proud of her that she finished everything! But she only got six days of break before we found out she had a relapse, so she had another amputation. It came back in her lungs very aggressively. We scrambled out to the Cleveland Clinic to the best-of-the-best, back and forth a couple times, and we just lost a battle, to tell you the truth. We can’t really tell you every detail, but we lost the battle, in the end we got her home in time to visit her family and friends and it went very quickly, too fast, and now we’re stuck with the grief. Again, back on that the pendulum or rollercoaster of great sadness… but then trying to use that pain to create power, to create beauty out of our lives, and to remember her and to help other children out too. So we didn’t get a choice that she got sick but we do have a choice in how we move forward. So we’re going to make the most of it.

I think that’s what is inspiring to everybody – that out of the sadness and pain, you want to do something to help others. So talk to me a little bit about that: about why you want to do something now, after this horrible thing that you’ve been through, to make a difference.

Brian: I believe cancer changes you. It gives you a different perspective on what’s important. Like I know I lost my daughter, but I am seeing children getting osteo, you know… I see it on Facebook and I know of children going through it now. This just has to stop. We have to give them a better opportunity. It has to happen now. I’m not waiting. I don’t want to wait. I want to do everything I can. Whether it’s a statistic, you know the 4 percent of cancer funds, why can’t we get 5? Why can’t we get 6? Why can’t we get, if we can’t get new chemo drugs, why can’t I make them more effective or less hard on the body? Why not? That’s what I ask myself, “why not and why not now?” Why wait? Let’s just do it and see what we get. I mean I have – I don’t know how much time I have left in my life or our lives, but I want to make it purposeful and change the 4 percent and change the statistics and have a kid around here a bit longer than was expected or more options.

What do you hope to accomplish by raising these funds?

Brian: I know, like I said before, that there are parents before me and parents after me, and I need to learn myself the knowledge of the system. I mean, you can raise a lot of money but it needs to get to the right people who are doing the right experiments, the right clinical trials – the ones that are going to work. There’s two parts: I think the families need support like you mentioned from the health insurance, to the loosing or going down on incomes, to mental support for the parents and for the children. But the treatment needs to just be improved.

I know this is difficult, but one of the things that I remember about Briana was her fearlessness. Could you speak a little bit about that to let people know about what made her so special? Besides the fact that she was your daughter, she was a special kid.

Lauren: She’s just strong. Any type of roller coaster, just anything exciting, thrilling, she was up for. So we did go to a few amusement parks, and even before you she was diagnosed she wanted to go on every roller coaster there was, and even after diagnosis. When we were in between treatments, we went to Cedar Point, (with one leg) with one leg, she went on every single thing she was tall enough to go on. So she pushed me to go on a few rides that I wouldn’t have necessarily done. She was up for the thrill, up for the challenge, wanted to have fun and just went with it.

Interview: She was that way with games too, wasn’t she? I mean, the way she attacked Minecraft and things like that.

Brian: Her own limitations were her height or anything she put. There were no limits to her. That’s what the sad part is – I don’t know what she would have been. I mean, she just definitely had the willpower and she definitely had the heart to do things and she was kind. Just the love she had for people too. She walked a little girl down, a younger girl, down the road here to the bus with her to her first class. She knew that she couldn’t find her class, and so I heard that Brianna walked her to her class on the first day of school. Besides being a thrillseeker, she was very kind. She wasn’t told to do these things, they just came naturally. She just had a heart of kindness, and the thrill-seeking, I mean she just go on rollercoaster, she went to the front seat. Hands up. Nothing I would do when I was 7 or 8, I’d be forced to go on them, but she just wanted to do them. And I was always worried about what was the next ride. We would take turns. So there definitely was a sense of fearlessness. I mean, I think she would have gone skydiving at some point and had to drag one of us along or both of us along as she got older. I knew that probably would’ve happened.

So tell me about what you want to do to kick off this fundraiser.

Brian: Well these children and my daughter have to face the scariest fears and they don’t even know sometimes that it’s death – just the needles it’s the surgery. It was fair to say it was very scary. I mean there are hundreds of pokes, she doesn’t feel good, she lost her hair. I mean her and lots of kids just need to face all this. I’ve had ideas of doing things that test my own fears. One of them – I do not like flying very much. I do need to take a sedative or have an alcoholic beverage to get on a plane. I’ve seen YouTube videos of people riding with the Blue Angels, and I think what would be crazy enough to put myself in a position to do that for Briana and for pediatric cancer to raise funds. I’m willing to climb a mountain, for raising the funds. It’s something I don’t know how to do but I would learn how to do and I’ll go every elevation and plant a flag for osteosarcoma or pediatric cancer. I want to do something big and beyond stretching myself, just like all these kids do. They’re forced to stretch themselves. Briana was forced to stretch themselves no matter what, because the hope is that they were going to make it. I think it’s all we all go in this cancer diagnosis is that “we’re going to make it. We’re going to get through it.”

Would you say that knowing Briana for the short time that you did has inspired you to be, maybe, more risk-taking than you would have been otherwise?

Lauren: I think so, I mean she’s definitely made me braver. If I have something that I’m going to into or just something that I’m apprehensive about or nervous about, I do think about her and it does push me to think that there’s no reason that I can’t do something, after all that she went through.

Brian: I think the same way too. Even when I’m working, I try to get back to the gym, and sometimes I’m tired, I would say more for me and one more for Bri. You know Briana, it’s her name, at the end. So it’s kind of what I have in mind, even if I’m studying, it’s like, “One more test Brian, one more question, do it for Briana.” So yes, there’s definitely an extra push because of her.

Is there anything else you think we should know about Briana, about your interest in pediatric cancer and wiping it off the face of the Earth, about being fearless that you’d like to add?

Brian: You know, gosh, if you lose a basketball game or a football game you can come back and train harder or study some more and come back and win and you know you can just work outwork your opponent. When you lose to cancer, I mean we lost Briana. So I mean, what else can I do. Again, make this pain turn into power and beauty, and to again like you said, wipe it off the face of the Earth, at least make an effort to. I go back and forth with sadness to anger sometimes and I think anger is almost a rage that I want to go after cancer. I want to do anything I can to find a cure for osteosarcoma or any pediatric cancer, neuroblastoma, it doesn’t matter, I just want these kids to have more options and more opportunities. I want Briana here. I want your kid here. I want the kid down the street suffering also here for longer. They’re important, these children are just to important to try your best.

[INTERVIEWER] I think it goes without saying that, I mean you can’t walk away from something like this without some kind of anger and some kind of, you know, hate for the disease that’s done this terrible thing. And you know if that turns into something positive, that makes a difference, then it’s directed toward something good.

Thank you. Thank you both.