Bailey Schreier and Cindy Kern

00:00 My name is Cindy Kern. I'm 58 years old today is November 7th 2010 and we are in Oklahoma City, Oklahoma.

00:11 And I am the mother of Bailey schreier. I'm Bailey schreier. I'm 23 years old. Today is November 7th 2010. We're in Oklahoma City, Oklahoma, and I'm here with my mom.

00:26 And I am I wanted to ask you I guess I need to kind of lead into this a little bit. But when you were 13, you complained for a few weeks about your right clavicle starting to protrude and tell my we kind of hemmed and hawed and actually went to the doctor and I thought perhaps your back with scoliosis sing. Anyway, long story short. We know what happened on a Monday after school. You came over to the hospital and had a cat-scan and the next day at 9. I'm sitting in my office and our pediatrician walked in carrying those films. And of course, I immediately knew that something was wrong. And so now just jumping ahead and not going through all the travails of the next 2 or 3 hours. Dad and I were at home waiting for you when you got

01:26 High School

01:28 And you came walking through the back gate and I'm not real sure what possessed has to both walk outside, but we did and as soon as we walked outside you stopped and started backing up and you said

01:45 Who is it? Who is it? What's wrong?

01:48 And I had to say it's you it's you and I just wanted to know cuz I guess we've never really talked to whole lot about that moment. What you thought or how you felt when I asked you there when I told you that well or is jumping right into it.

02:14 I I remember walking home with Cody beavers who I had a huge crush on and we would both get off. My my friend Shanae would get off was way before our bus stop he would get off there because you had a crush on her and I would get off there cuz I had a crush on him and we drop her off at her house and then we would walk to our back gate and I just remember being

02:46 Completely

02:48 I was just I just normal just happy and not thinking about anything and I walked in the back gate and night how I remember it is exactly that seeing you guys and saying who is it? Who is it? Because we've been through so much my group of friends and I had all had family members passed away in a very short. Of time and I just knew that something horrible had happened to someone that Reagan my sister something after Andrew my brother anyone I knew something had happened and it's funny because I was so convinced by what everyone was saying when I had the CAT scan that it was nothing. Everything was fine. There's a one-in-a-billion chance that anything's wrong that I never it. Never crossed my mind when you guys came outside that it was something wrong with me until you said

03:48 That it was me.

03:51 And I don't really remember what I felt except I remember.

03:58 Sitting in the backyard and crying with you both and being sort of enveloped by both of you and in a lot of fear, of course, we didn't know anything at that time about what

04:10 What it was and I didn't I didn't know that it was cancer for sure. But I figured that's what it was and just a lot of fear in that moment. I think.

04:19 Yeah, and then that next day our pediatrician at arranged for us to have an appointment at Children's and of course, we we were all nervous and scared and I remember as you were having all these tests we walk past a poster and I guess it was like that social work type of deal but it said your life can change in an instant and I remember thinking all I know I know and and so anyway, the rest of the day was kind of a blur but oddly enough it seems so strange to think how quickly or your hopes and dreams change because we went from saying oh my gosh Bailey has cancer to finding out it was Hodgkin's lymphoma and being excited.

05:19 Yeah, but Hodgkin the first time around anyway, there's a 90% cure rate for young people and I was young and that was the cancer to get if you were getting one. So we were pretty excited. I remember to waiting for all of the results of the test that would decide the staging how far along the cancer was and then what kind of treatment I'd have to have because of that and everything. I remember everything looking really good. It's just going to be stage 1 and then all of a sudden that was weird and the cancer had metastasized straight from my mediastinum the area and my chest rub all of my lymph nodes are to my lungs.

06:11 Which way do you say it's for the highest you could be so that was frightening. But still I think is still a 90% cure rate as far as I know what we hoped for sure. The other thing that happened it was the first of I believe four times that you had to have a chest tube because they had to actually do a biopsy of that metastasis. As long as they they really thought it was odd to the Physicians didn't didn't really think it would end up being part of the malignancy but indeed it was then I remember just the Little Steps along the way and and how oddly enough how comforting it was at least for me.

06:59 To take you to the clinic and to sit with you while you had your chemo. I don't know what how you felt about that.

07:11 No, I mean I I always liked the clinic. I don't I still 23 years old. That's where I want to go and I have my check up is the children's oncology unit because even if I don't know all the nurses now, it's just it's that environment. So I guess it was comforting. I remember the first time I was sick just being bored a lot cuz it's the treatment was I mean, it was chemotherapy and radiation, but they had great anti-nausea drugs and I just remember

07:47 I just felt like a lot of I mean always a lot of waiting with hospitals, but it felt like a lot of waiting when I was at home. I wasn't going to school. I was doing a Homebound Program. So I didn't really have anything to do cuz I would get my homework done in an hour and then before then but I didn't want to go anywhere cuz I was bald and sort of emaciated.

08:10 And in the same with the Jimmy Everest Center, I just remember kind of being bored and waiting however many hours it would take for the the chemo to go through. I remember to you you would always encourage me to bring something like a book or something to do and I would but most of the time I wouldn't even I wouldn't even read. I think there was something

08:34 I liked about even though it was boring. There's something I liked about just waiting it out and not really focusing on anything else. I don't know can one thing that I remember whenever I talk to this day when I think of Jimmy Everest I get a shot of a smell of the lunch that that cuz when you first went there when you were 13 and 14, they would actually bring lunch around to the kids if they happen to be there. And if you know, I mean it was no offense Jimmy Everest or her that was hospital food. And it's funny how sometimes smells just stay so strong with the memories, but I guess the other thing I remember when three years later when you relapsed what really what a cakewalk that first time was we thought it was

09:31 I'm so horrible that you had to have that chemotherapy and radiation and

09:38 Yeah, man. I I remember reading cuz there that I was in remission for two and a half years. I think. Yeah, and we thought that there was a spot on my scan when we're all done. Everything look good. There was one spot on my chest and they thought that it was probably it must be just my thyroid rebounding from the radiation because it wasn't my finest. Thank you because it it wasn't growing and it turned out it was just sort of dormant for 2 and 1/2 years, but during that time some time in that. I read one of Lance Armstrong's books and I remember reading the parts where he had started chemo and he described his just basically all he remembered was throwing up and and I remember thinking I had it really good. I was really lucky and then the second time I got sick.

10:37 It was a lot of throwing up. That's pretty much all I remember from parts of it often wonder how much you remember. I obviously you remember that first day. There was a we were we were really frightened cuz we knew that chemotherapy would be much more aggressive and that you had to be hospitalized for the chemo.

11:01 And then of course when they had gone and put another central line in they've had a lot of difficulty the position surgeon had trouble because the previous radiation treatments had scarred on my veins and vessels. Yeah, and so when they had struggled, I don't know how many times maybe I'll try that put in a line about 18 different times and finally gotten something on your neck on in the jugular and you we went in for that first day nervous and scared and from the very beginning you said there's something wrong and

11:47 Don't you know I I we were so nervous and I remember the residents kind of getting mad at. Oh, yeah. Yeah. Yeah, and I remember I was getting mad because no one was listening to me and as they were it was the first chemo treatment. So it was like, what was it 1200 mg? It was his a lot more to that me. I was a tool bag of IV fluids and just watching it go down and feeling worse and worse and they were kind of thing. Well, yeah, you're going to feel worse. It's chemo and I was thinking know something's really wrong. And I eventually I think when I finally listened to me was when I started coughing and it sounded like there was Liquid in my cough and I remember to they finally got the X-ray machine up to our room our room together. They got it up there and took the picture and it was cuz like I said,

12:47 You're always waiting in the hospital. But that was the fastest response time I've ever seen after any sort of skin or anyting because it was it felt immediate. Someone went back up and said I don't remember. Do you remember what the doctor said something about? She said your chest x-ray is like enormous Lee abnormal to something when we just went and I remember saying turn off the chemo and and come to find out that's what happened that that's all had migrated that or I mean the catheter migrated out of the vessel and it was all any onion to the space around my lunch. That's right, right prophase. So I was right and then the next few days. I was sort of things always happen. It's like they have it planned out where you're going to be you take this drug in this is going to happen to take this Dragon this going to happen, but I think probably for everyone there glitches along the way and so they're the doctor

13:47 Constantly tweaking and trying to figure out what to do next when things go wrong. And at first they said well your body will just absorb it and so it was like 24 hours maybe and my body was not absorbing it and I was in a lot of pain a lot of pain and finally they said okay, we're going to take you down to emergency surgery and get that fluid out and I don't know if I've ever told you this I may have cuz I know I've told some people but I don't know if I've ever told you.

14:21 I remember that night being down.

14:26 In that waiting room for the emergency surgery unit and throwing up just I mean it was it was this unearthly color of green that might seem vile before but it was almost neon green.

14:41 Not even human and

14:46 They took me to the surgery room and I remember.

14:52 I remember them putting me on the table moving me from my bed to the table and that was the only time ever.

15:02 Throughout the whole experience. I don't know how many years between the two illnesses that I

15:09 I remember them putting me in a set again and it felt so much better. And I remember thinking it's okay if I die and then I woke up and it was kind of a surprise as a consequence of that you had actually obviously it worked and the hold all the chemotherapy, you know that hard stuff we went through cuz I'm talking to you. Yeah, but

15:40 For whatever reason I'm getting all that chemo right in the right pleural space or whatever. It was. You did not sleep for about 2 weeks any more than maybe 5 or 10 minutes at a time, which was the same for you guys when we're funkin together and I just I can remember just be so beyond tired. I mean it was it was but at the same time and the positions would come in and and the nurses too and they would think that you were totally out of it and didn't know what was going on because you you just worse you were kind of zoned out looking and yet they come in and it's a baby. What day is it? And I think oh my God, what day is it in and you'd say it's Thursday and I I'm on my second later or whatever that mean. He knew how many bags of chemo you had that day. I mean, it was pretty rough Mar.

16:40 Couple really guy paid a lot of attention to that stuff. That was all I had to do. I think I remember I think because of that experience that I think generally I was probably a little obsessive about all my tubes and things anyway, but because of the the mishap yeah the port I was much more wary constantly wary of what was going into my body and how much and

17:11 Usually people in it was like don't worry about it. But I would think okay this pump that's pumping the chemotherapy into my body, isn't it? Just as likely that it could malfunction in some way and suddenly just shoot everything and where there would be a little bit of air in the line and I remember learning that getting air into your blood veins could cause death like it could actually kill you to get oxygen too much. I don't know how it works better having that are in there in place of the blood and so there would be a little tiny bubble in the line and I would say, you know, is that okay, is that okay? And can you get the nurse and even though you were a nurse telling me that it was fine? Yeah. Well, I know when you were just saying that and I thought I never thought of this before but that whole sleep was kind of episode part of that probably was just that you're being so hyper aware of what was going on and being afraid. Yeah. I was just kind of attributed it.

18:11 To the medication and speaking of the medication. How do I tried so hard to come up with something so that you would rest a good rest and one of the things I tried with a low dose of Haldol, which is the really old cuz I caught it. Yeah, it isn't actually a kind of gives you can give you those real parkinsonian kinds of symptoms were a real flat affect and and you your arms were real rigid and you were rolling your fingertips just like, you know, someone with parkinsonism and that was really hard to see but from for Dad the worst thing was you had you develop the side effect to that drug and it made you roll your eyes way up in your head in a way out of whack and and you couldn't not do that. I mean it's it's called this.

19:11 Nisha I think it's worth something like that. I can remember anymore. But anyway Poor Dad was in the room with you by himself. So that was the first I think it was the scariest moment of that part of anything for both of us cuz I didn't know it was happening. Suddenly. I couldn't keep my head from going back and my eyes from rolling back and I was completely rigid and what was also weird about that is I knew you had to be afraid but I mean you're there there was no effect whatsoever. And which is also part of the symptom. That was that was scary Poor Dad almost had a heart attack and died right there too. Well, and then the other part I remember best which is kind of Representative of our whole time. They are you being a nurse registered nurse and being there with me but not as a nurse As a caretaker the nurse came in a young nurse and she had basically no idea what was happening. And the first thing you said, I think you maybe came in at the same time like that. You guys have been getting food or something and

20:11 The first thing you said was get her some Benadryl and they ordered IV Benadryl and shot me up with it and suddenly it was fine. It took all the symptoms away. So it was it was nice having you there. Anyway, you know, you had three cycles of that really robust chemotherapy. And and after we got past that first one was pretty scary going to the second one, but that that that wasn't bad because you would stay give you so much medicine you would sleep for a couple hours and then you'd wake up and you go to the bathroom and you throw up and then you go back to sleep. So we actually got some rest the other thing. I remember about that time. Of course, you lost all your hair while your eyebrows and your eyelashes. I mean, you look kind of like a little newt

21:02 And you always always through all of that kept such a good sense of humor and we use that humor that I can remember calling you Gollum. I mean, I think about people that has Lord, they probably think but but you were so funny because that you would walk like that and then raced over. Yeah.

21:24 It was just it was you made it easy. That's the other thing that when I would be away from you whether I you know, just went to the store or whatever. I would just have this mom thing fear. And then when I come home and see you and be with you then that was enough it would just call me down. I would feel okay, and I'm and we weather that we did and it's been what it's been 5 years or 5 years in October. No, honey. It's been sick since my since you transplant no doubt for 5. Okay. So you spent the first semester of your senior year in the hospital. That was 2004. Okay. Yeah, so it's been 6 years all your right? Yeah.

22:24 It's kind of nice that that happens now. Yeah, I remember at first it was like, you know, it's been 6 months. It's been a year and it's nice but I've got we've gotten to a place while you haven't obviously but where it gets jumbled up and I have forgotten how long it's been cuz we're just living normal lives now. Yes. Yes we are which is also weird. It is the other thing that I guess I kind of wanted to talk about a little bit as far as that sickness and in all of that goes is when we talked about time remember how

23:01 It was like you have you just have your own almost dimension of time. I don't really know how else to explain that. Just completely separate from the from life before in life after and it felt like forever and it felt like a really short. Of time and it didn't it doesn't make sense within the normal scale of time. I guess. It just was totally different I think because we were so focused on that one thing. Yeah, that was all of it. There was everything gets real narrow. I mean you just are you have tunnel vision? But anyway, you going on and graduate from college with honors, and I guess the other thing that part of why I wanted to have this conversation with you was to

24:01 To talk about Hope and how how'd that can carry you through the kinds of things we went through and it's almost hard to really remember.

24:20 Those feelings are or certainly not with the same Clarity and maybe that's good. Yeah.

24:29 I guess.

24:33 I guess for me. It's a little different when I think back on it cuz it's not.

24:41 I don't know. Hope was important. It was really important. And I remember there being when I got sick the second time. I remembered Jennifer and Ally coming to visit us some friends of ours and and Jennifer making Ali walk across the room with her shoes off because her feet were so flat. They would make sort of farting noises. Does she want and Allie has since told me that her mom beforehand. They sat in the car and talked about funny things that they could talk about because you had told Jennifer that I hadn't smiled lately. I haven't been smiling and

25:28 I guess I mean it was hugely important that we stayed helpful, but I guess it's kind of mixed for me because when I think of other people that I was in treatment and there were lots of people that were real helpful it still died.

25:48 So, I don't know I guess I mean I hope is important and it was huge for us. But

25:58 I don't know. I guess it's something that I've learned from all of this is that

26:05 How little control we have over anyting whether it be through hoping or praying or whatever.

26:13 I didn't have a real good sense of

26:17 Have fun my spirituality once I was done with everything because at the beginning I was a very very sure that before I was sick. You guys called me Sister Mary Bailey and yes we did and and I was as Catholic and I I just I knew everything I knew that there was a God and I knew that that I was going to be saved. I knew I was doing it. All right, and then I got sick once and after that it's not like I lost God or anything. It's not like I was thinking God wouldn't let this happen is just sort of a realization of of just that how little control we have and I'm

27:08 And then by the time I was sick the second time I had already decided not to go through confirmation in the Catholic church and was moving in another Direction I guess and it took

27:22 When I was in college a couple years after I had gotten I was in remission. I guess it took hearing that David had died for me, too.

27:36 Mourn quite a bit and to move to a place of spirituality. That was that I feel like I'm still at and David was a young man that I was in treatment with David was

27:52 This charismatic handsome super friendly.

27:58 Guy I had such a crush on into.

28:07 I just never even and never even in the beginning. I really did think that it was all about open just staying positive, but never crossed my mind that he would die.

28:20 And I remember just walking on campus actually in the girl that I knew from the clinic came up and she told me and I have no idea.

28:28 Are you was at second that he died?

28:32 And extremely hard cuz I think I was still leaning on that the ideas hope and positivity was enough.

28:45 And it had to come back around for me to just realizing that.

28:52 He still here.

28:57 It's hard to explain how I explain it to myself, but actually bits and pieces of him are still here with anything guys, you know, it's back it goes back into the Earth in some way.

29:11 Molecules or whatever foot back out and become something new. So that was what finally was enough for me. I know I went to a lot of those same kinds of things. I remember someone at work telling me one day that

29:29 Those kinds of things happening to you or to someone that you love usually send people in One Direction or the other to become, you know, just the two really have it enhance their faith or do the opposite and for me it kind of did the opposite my struggle with that all the time, but I came to the place where it just seemed so random and it's totally unfair to say, you know, why Bailey or for you to say why me because why not I mean and then there was Emily Emily lived across the street from us and she was 19 when she got ovarian cancer and died two years later. And that was I think probably the biggest thing for me was I know Cindy's prayers for just as good as mine.

30:30 So I don't know I still struggle with that. But yeah, me too. But you know, we are fortunate to be where we're at. And I kind of like to just one this up with some more of the fun stuff. Yeah, it wasn't as bad as this but I'm in Riga. No kill me for this, but I can still remember her God lover. She's my oldest child and are all this child and always been a bit of a drama person and I can still remember her sitting on the couch next to you and you're totally bald and you have no eyelashes and you have no eyebrows and she has a cold and she saw it. She said huge you guys can't imagine how bad I feel something like that? And we all just looked at it. We just cracked up and she left.

31:30 Let's get this in some kind of perspective. Yeah. Yeah. I remember that video that we still have all that you've done well known that would really make her mad if it would know that the video of Andrew and you and I and

31:54 I think what it is is I'm bald and wearing bunny ears and I'm filming and I turn the camera to myself and say do a little dance for us and then you and Andrew are doing it. You're teaching him the

32:10 Charleston maybe in a few other things. I just remember re-watching that Andrew and I and both of us just laughing at how silly I looked I mean it wasn't even wasn't upsetting. It was just with bunny ears on and the big bald head. I don't know you had on Reagan's knee-high black boots and green t-shirt and cowboy hat and dads and you just bald and I don't know what you're doing, but I can that's a great picture. It was a lot of fun. We had a lot of fun through all that weird. It is weird. It's real weird. The other thing that I do want to mention because I think people need to know this is you were lucky enough to have enough talk Alice stem cell transplant your own stem cells and they kept telling us

33:10 Now when she gets so stem cells it's going to smell like garlic cream corn and we're thinking what the heck are you talking about? The craziest thing I've ever heard and of course they got you you'd had a week of really aggressive chemo obviously to wipe out your immune system and and then they hung the stem cells which just look like a unit of blood and it giving you a lots of IV anti-nausea medicine I gave you Benadryl, I mean you were snow you worked out and they open up that line and the entire room sweet cream corn cream corn and I threw up almost immediately threw out you were hardly awake and you threw up so I remember enough that I remember throwing up into the trash can

33:57 Looking over and seeing TJ another young man that was in treatment standing outside and just kind of staring in.

34:07 How much was coming out of me a little body and being embarrassed but not enough to handle embarrassment. Yeah. Well, I had a couple of questions for you. Well did

34:26 Did did you did they ever give you percentages or or like a probability of my surviving the second time around? No, no one actually ever did a course. I did a lot of research on my own and it was you know, when you read things like what it what is the word they use for the chemotherapy was like, you know, it's like last night and it's not last-ditch. I can't think of the term but it's like

35:02 It left me very frightened. I'll buy that I I I mean and I did look up a lot about percentages and things like that. One thing we did know was the type of cancer that you had Hodgkin's then you also had nodular sclerosing type which had a higher rate of survival. So you had those things going for you and I just I was real afraid. I was afraid we'd lose you and I didn't know how I'd ever deal with that. Yeah. Yeah.

35:39 Got any more. Yeah, did you ever think that did you ever was there ever a moment that you thought I was going to die. Oh, yeah, it took you a moment or many moments. Will I think probably that first night after you'd had all that chemo in your lung before you had surgery and they were giving him morphine for the pain and you had oxygen and you have a face what you had so much fluid from that that it just, you know, kind of filled up the tissue around your neck and your face and you were just puffy. I remember looking at that nasal cannula and it was the embedded cuz you had so much edema.

36:19 Which is for all of us in your tissue, and I thought then that it was the beginning of the end. I did. I thought you know, this is horrible and I remember thinking why isn't she and I see you she should be in ICU. And and I also remember then when the surgeon came in, I really felt like he hadn't had a chance to see the films and when he did see him he came because he was breathless when he came in the room and they got you down to surgery really fast and then when I went in when we went to see you afterwards in a recovery, you look so much better just in that short period of time and then I kind of got, you know past that but

37:05 There were there A lot of times. I I probably cried in the shower more than I cried. Anywhere just seemed like the best place to the cry and not to leave Andrew out of it. He was ten when you were sick the first time and it was really hard on him and he was such a quiet little boy and I think he internalized so much and I'm so proud of who he's become and I think in large part A has a lot to do with, you know, dealing with that kind of scaring your life at 10 and again at 13

37:43 I always remember when he said to me mom, you never say bless you when I sneeze and I remember thinking oh my gosh, I think he's right. It's like he he became kind of the little silent guy, you know, and I wasn't hearing him cuz I was so involved and I was so glad he told me that so I guess so.

38:06 In closing I just wanted I really really appreciate you doing this Bailey. I think it's some you know, even if no one else ever listens to this, I think me and I will have it and we shared a lot when you were 12. I thought you were going to go to the mall and never come back and then you got cancer and wow just just changed everything but look where we are in a good place. I love you very much Mom. I love you Bailey.

38:41 I love Andrew and Reagan and Dad and David and David. I'm just glad that I'm here experience everything the good in the bad. Absolutely. I am sorry that I made you cry. That's okay.

38:58 Source you were I just want to clarify how old were you when you got your first diagnosis until I was 13

39:09 Then

39:13 Play because you were.

39:15 What's the limitations of what you could and couldn't do or contribute but I kind of always looked at. It is both a blessing and a curse because of course. I just knew I'd seen people die. I'd seen people die of cancer and I knew what that look like but on the other hand, it was a blessing because I understood a lot was going on and I was able to kind of interpret for Bailey and I remember the day before that day. We first went to Jimmy Everest. I told you ahead of time now. They're probably going to put 14U they're going to do this are going to do that. And I think those kinds of things were helpful. There was one time too and they left some sort of line in that we forgot to go back to the clinic and get a headache and just a temporary one and I was freaking out and you just ended up taking it out at home. It was easy enough to do.