Stacey Rosenberger and Fred Rosenberger
DescriptionStacey (45) and Fred Rosenberger (41) remember the difficulties of explaining Stacey’s cancer diagnosis to their daughter, Olivia. Stacey and Fred remembers all the techniques they used to explain Stacey’s illness to Olivia.
Subject Log / Time Code
- Stacey Rosenberger
- Fred Rosenberger
Partnership TypeFee for Service
StoryCorps uses Google Cloud Speech-to-Text and Natural Language API to provide machine-generated transcripts. Transcripts have not been checked for accuracy and may contain errors. Learn more about our FAQs through our Help Center or do not hesitate to get in touch with us if you have any questions.
00:03 Okay, my name is Fred Rosenberger. I am 41 years old today is April 18th 2009. We are here in the Kingshighway building of the Siteman Cancer Center at Barnes-Jewish Hospital and I'm here with my wife who will now introduce herself.
00:26 And I'm 45 years old and I'm a one-year breast cancer survivor. Today's date is April 18th, 2009 and has Fred said we're in the cancer Siteman Cancer Center in st. Louis and I'm talking with my husband about telling our child about my cancer.
00:46 So here we are. Yeah when I was when I was thinking about getting ready to come here. I was thinking that telling our daughter Olivia home. We call Livi that it was kind of an evolution or is that it's a process not a day. She's at the time. She was five. She's six now she was four. When was it didn't quite have her birthday. That's right. I found out it was the first letter in I was New Year's New Year's Eve of 2007.
01:23 Yeah, that's right lives birthday isn't until the following February. So she would have been for 4 years old. So that kind of limited what we could tell her right away. But you know when the first days I did a whole lot of crying in the bathroom, which is not very far from her bedroom. So, you know, we figured at some point we had to tell her something you remember that yeah, I mean
01:53 Jet kids always brighter and more observant than you want to give him credit for and I think she knew pretty quick something was going on. Yeah, but you know, she asked her for what to do when I was really upset because well not only was it cancer, but my mom had died of colon cancer like I guess eight years prior at that time. My dad had passed about a year-and-a-half before that from pancreatic cancer, and we've both seen them deteriorate and it was very painful and you know friend's dad's illness was so recent for us and you know, my mom I was the one that nursed her for the last two weeks of our lives. So I was really intimately familiar with you know, how bad it could be. So
02:47 I was really scared and and here's this little person that depends on us and
02:52 Things to is that we didn't it wasn't like a today. You don't have cancer today you do you get we got the first letter that said, oh there's something unusual on the mammogram, right? It's okay. Let's go and have another test and then a week later you had it off and you had what like three or four right different mammograms and special views and MRIs and ultrasounds. And yeah, we spent a lot of quality time in this building as a matter of fact yasso. And at one point we read the path report and we googled never read your own path report because we couldn't interpret it and we were under the impression that although I was a stage one that
03:42 That my survival chance was something like 40% given what we googled them like 40% right? And that was and you know, what do you what do you tell your child then? I mean we didn't know for certain, you know, because we hadn't we hadn't talked to my surgeon yet. He was going to interpret that path report that we never should have read about the reason we were able to read aside. I actually work for BJC that where her doctor is and she signed a release form and I had access to all of her medical records. We take a look and tell me what the hell. Yeah, let's you know, we want to know right and being proactive and do you know what thinking were intelligent people? We should we should be able to figure this out with my computer and Google no problem. So much. So, yeah, I think I went into work early that day. I'm a normal time and I was going to meet you were going to pick me up you were dropping Olivia off of The Fray.
04:42 And then we you pick me up and we drove down to hear together for my office that there's a lot. I don't remember there was a lot of crying in the car cuz we both Googled it separately from each other.
04:57 And you kept saying I'm so sorry honey. I'm so sorry the so yeah, we was a lot of crying in the car on the drive down here and then we went to see the surgeon and she walked in and she said what are you crying? Not that bad? What do you mean? So I guess we didn't know what to tell Olivia because a cancer diagnosis doesn't happen all at once, you know, you've got an abnormality and then you know, you've got cancer and then you know, you got breast cancer and in my case, I had a tumor and does that turn out to be a lipoma another growth of some kind that turned out to be non-cancerous or yeah, I guess is non-cancerous in my right breast. And so, you know, I didn't know what exactly what information I was going to convey.
05:57 You know, it's a whole different discussion. If you know, mommy's very likely to die. I mean if this, you know, if this has been, you know, some end-stage kind of thing versus what it turned out to be which was you know, I'm stage 1, you know, we had no lymphatic node lymph node involvement when you get a little out of yourself, cuz you know, the first thing we we had no idea what the process was going to be. I'm so Julie says, okay. This one spot is nothing to worry about Doctor Doctor Morgan Taylor color Julie behind her back. I don't
06:42 So the first thing we knew was we were going to we Stacy was going to have surgery kind of way. I'm so you know you start off presenting. Okay, we know we need to have the surgery. So Mom is going to go to the hospital. They're going to do an operation and live rain. What's an operation? What are they going to do? And you have to explain to her that they're going to cut you open basically and take something out. Yeah, she fastened onto she heard the word operation and she knew that her friend Anna had that game and she kept wanting to know if dr. Julie was going to you know, take little tweezers and you know, I I don't know whether she thought that you do I would vibrate or make a noise if that was that was the takeaway point from her that it was just like this game.
07:34 And all she really understood right away was that Mommy was going to be away for a little while and then the mommy you couldn't jump on mommy's right side. Do you remember how shocked we were when we learned that it was outpatient?
07:50 Yeah, yeah, my my lumpectomy was outpatient. So yeah, so it wasn't so that's right. Cuz that time I wasn't going to be gone that much just to go in in the morning and come home in the evening. That's right. That's all right, so
08:08 You're all she knew right away. Was that something was wrong when we told her? Well, you know, how do we say sick? I think we said yeah, she's going to make you better. Right? Right, but we didn't really know that for sure now cuz it was going to happen with if there's going to be a lymph node involvement, right? Because how clean can you clean the margins were going to be when they took the two more hours and we didn't even understand what margins were for quite a while so still on the table to that point. That's right because well know they did the needle aspiration to find out
08:50 Whether the one was one that turned out to be cancer was and I think they aspirated the other one, but I don't remember how they figured out. That one wasn't wasn't a danger to both. I guess they did. But yeah, so we kept you know sort of
09:10 Telling living, you know, well Mom is sick and Mom is going to get better. But at some point once we found I guess it was after the mastectomy after the lumpectomy and we knew that I was going to have to have a radical mastectomy. So I wasn't going to or bilateral mastectomy. I was going to have to go anywhere right away anyway, and
09:37 We figured we better use the word cancer because somebody was going to say it. I mean somebody would because all of my friends knew in a lot of that the friends that were taking care of her. Yeah. They're the mothers of of her friends and my friends and you know, somebody was going to say the word cancer and people always try to put a
10:01 There's a very negative, I mean I get stung standable not a bad word before she heard it from outside me to come through anyway, but but we thought at some point we needed to use that word. So we did and did you remind me that we read books to her we found you. I mean it was hard to find good ones at the light in Little People little people. Most of them were for older kids. I was saying like the 8 to 10 range older and even though I think the ones that we found were for a lot more serious. Basically, you know, mom's going to die and of a Bach which at that by that point we weren't I mean that wasn't really expected to happen, right? So that one was hard to even process read it to her.
11:00 Read it all which was fortunate because I would show her the pictures in this one book that we got from the cancer center at at Missouri Baptist, which is where I ended up getting my unbiological treatment. I think I got it there or maybe I can even send her. But anyway, there was a book and it had pictures of you do moms with you don't know hair women with no hair and then they had one with a woman in a wheelchair and Livvy really?
11:36 Glommed onto that one too. And she said are you going to be in one of those chairs? I've seen people in those chairs and I I had to tell her I don't know I said I don't think so as it turned out I was for a while but not not at home when they are you out of the hospital in a wheelchair. They don't let you walk out over.
11:59 And not to get too far ahead of the story. But you know when I got sick with from the chemo, you know, she saw me on stretchers and chairs and hospital beds.
12:12 So do you remember the cancer doll the one with the hair dolls? Because you know, she's that age and we thought by this point we knew you were going to go through chemo and radiation early meeting with Doctor less your oncologist. He said yeah, you're basically you're young enough and strong enough that you might and since they got clean margins. That was small you might not have to do the chemo and my response was. Oh hell no. No, I'm doing chemo because I don't want to come back and no I don't want it, you know get it in 10 years and have it, you know, kill me and right before I die. I'm thinking boy, you know, if I had chemo when I was 40 for this might not have happened so, you know,
13:10 But does so that so we think dogs right? And so I find I've got short kind of sticky up a haircut little bit spy gear the Mass Pike here at the time than it is now, but they had this cancer doll. That was a stuffed rag doll and it was supposed to show the effects of a woman under chemotherapy. So the First doll had really long flowy hairs $1 changeable hair shorter hair in a yellow patch in the third doll head spiky sticky up the one that supposed to show the effects of chemotherapy looks so that didn't work.
14:05 Well, yeah, but you know, I intended had you can put a bald head on it and a and a rag so we started talking to her about that process about how you're going to go through chemo and how you know that the chemo drugs would make you very sick for a couple of days. I got to be a little worse than well. This was the you know, when we were in the planning free actually doing is Sade still explaining explain her what was going to happen and
14:36 Oh boy.
14:38 That was hard as pretty awful, you know, cuz you feel pretty rotten yourself. I mean, you know, it's a hard thing to talk about cuz you know that you know that elephant in the room of death Rises there regardless of what the doctor says your chances are and you know how well they think you're going to do y'all. That's always in the back of your head especially going through. I didn't know Stacey's parents. They both passed before I met her but she went through it with her mom and we are going through with my dad just bought a year-and-a-half before and so
15:17 You know you got on the back of your head, but you're trying to be brave for your kid cuz you don't want to freak her out but it's not like you can switch off your human heart and say a parent now and I'm going to be you know, this Superwoman and say, you know, everything's going to be fine when I don't know the atom and you don't tell them that there's a possibility that you could die. Actually. I think I think we did deal with the subject of death. I remember sitting on her bed with her when she still had a little toddler bed. So the other bed was kind of track and I said, well, you know cancer is a disease and it makes you sick and when you got cancer like I got cancer most of the time you get better.
16:08 And she
16:11 I don't know if she use the word die or I use the word die, but she was starting to get the concept of right because her grandfather Yeah, so she sort of the word died in death. The words were were in becoming part of her vocabulary. So she asked me, you know, could you die
16:36 And I actually said yes, and I remember that no, I didn't say. Yes the first time the first time I said, no, no course not I'm not going to die and then I went to
16:51 One of the Siteman groups that young woman's breast cancer, whatever organization-wide
16:59 WB whatever does n and
17:04 It was the topic that night was on telling your children about cancer dealing with your children and
17:13 I didn't choose the first meeting I've ever been to and I cried and I cried and I said, oh my God, I just told my daughter that I wasn't going to die. And you know, that's not a promise. I know I could keep button.
17:24 You know they said well.
17:28 You know tell her you thought some more about it and your answer is changed a little bit. So I went back and I said, you know Olivia I've been thinking and you asked me if I could die an answer is yes, I could but you know kids don't understand likely and unlikely. So I said the odds calculator so bad, but I'm young and I'm very strong and yeah, there are a lot of women who are sicker than I am who who do very well and I'm going to do everything I can.
18:16 Te-de be well and
18:20 I don't know how much consolation that was two are but you know a lot I think you had conversations. You know, when I was at work to stay at home mom and live with us full-time. Then she wasn't in school and I was at work. So I think you guys talked about it more than I did but I remember slow. Sometimes I be talking to her about it. I'm like, yeah, you know, honey mama's going to be really sick and she's going to be okay. Can I play with my dolls now? You know it's cuz she's she's at four-year-old. So she doesn't stop always focus on things as long as I know you're trying to get a point across and she's moved on. You know, okay, this is boring now. I want to do something else. It's true. To get your feelings talking about your own mortality and the kids like yeah. Can I have a peanut butter sandwich?
19:22 That was that was hard and she
19:28 I remember you know, she focused on the concept of my going-away, you know, and she actually still comes up with that Concept in those words. You know, Mommy I'll miss you if you go away, and I'm never really sure if she's talking about it in the sense that she did.
19:49 When I was you know, undergoing cancer treatment or
19:55 What but she still has that stuck in her head that I could go away and she doesn't.
20:02 Talk that way about Fred really about me going away. And I think it's really stuck with her that who she know you going through all that. We I don't say we shipped her off, but we know she spent a lot of time at a lot of friends houses because you know on the day of your chemo treatments that was pretty much an all day thing and your appointments be like what around 10 or 10 and then till you there till like 2 or 3?
20:36 And then so, you know, we'd have to take her to a friend's house at 9. I take you to the for chemo. We be there till 3 I take you home get you selling at home and then I have to go get her. So yeah, I remember we were talking and you know, she got kind of clingy for a long time. You know, she always the velcro child she had when she was with you. She always wanted to be with you. Yeah. Yeah, which is really hard if your first you know injured with the surgery and then you know, so ill with the chemo. I mean, you know and initially we thought that I thought, you know, I'm so strong and you know it good shape, but I'm young. You know, I'm going to get through chemo just fine and I didn't get through chemo just fine. I was hospitalized after the first one.
21:33 For 4 days the first one your trimmers on a Friday and then that Sunday night we went to the ER because you had your stomach cramps are so bad and we went around 6. I'll remember how I paid the doctor now, I you know, they said if you have any problems page the service so because Sunday I call the doctor I get their services. Okay. Well, what number can we call it back? And I leave my home number and you got worse like quickly so much screw this we're not going to wait around we're going to go to the emergency room and they end up inviting you for the four days, but when I get home
22:17 Your next day I check my messages on the study doctor called his back and he's like he's busy like, okay. I called you back and you're not there. So next time you call. Please leave a number where you can be reached because I'm like, okay, I'm being recorded So you jerk I couldn't believe how rude he was. Sometimes know somebody was covering for a doctor or doctor. We we thought was great.
22:46 I mean it was yes he is but you know, it was another stage in telling Olivia, right? I mean, you know because we sort of planned for me all the literature says you're the first few days after a cancer infusion you feel may be lousy and then you start to feel better and then you know, you have another infusion on Friday night at Friday off, right and then I'd have Saturday and Sunday I could stay home. This was the plan that's laid plan to be home to take care of you and them by Monday you would be okay for me to go to work that doesn't happen work. So well that first time all in that first week ahead like class for 3 days I have is taking a class.
23:30 On a Wednesday Thursday and Friday, and I had to leave in the middle of the day Thursday to go get you and take you home.
23:37 Oh, yeah, I don't remember you're leaving to take me home but I remember being so incredibly sick. So there was another stage of telling Olivia, you know, I'll okay, you know remember when I said I was going to get treatments and a day or two chorizo now, I mean, you know, dr. Julie the genius, you know, she did a great job, but you know why I also prided myself on you know, what Young strong, you know, blah blah blah, and I thought well, we'll be the same and it wasn't until that was another thing that we had to tell Libby well,
24:22 Okay, so
24:26 And I wonder if you know how she felt about that because we told her, you know, everything was going to be fine. And then the next thing she knows you and I and and she are all in the car taking me to the emergency room. And I think the only time I can ever remember in my life moaning out loud from you no pain. I mean it was overwhelming and I was doing this in front of my child which you know, if I had any control I would never have done and you know here I had to tell her well.
24:58 Okay, not exactly. What we said is going to happen is happening. It's no like 9 p.m. Where in the yard. Met you and we hadn't planned for.
25:14 Something like that. So we basically, you know got in the car we had dinner we had no supplies or anything and I end up just calling my mom who lives about 15 minutes away and said, Mom, can you just come and get her and keep her overnight and put her in whatever. So did you stay over night? She stayed overnight at Mom's it will I didn't get on the hospital till 3:30 in the morning. I didn't get no room till 4, so I don't remember very much about
25:52 That time I remember the hospital and I remember Libby coming to see me in the hospital and it was really hard to explain because we sorta drank the Kool-Aid ourselves. We believed my story would know is that I was going to come through chemo just fine and then we ended up having to explain that that really wasn't the case law that you have to this four-year-old now five-year-old, but newly 5 can't you want to come see you all the time at the hospital and you didn't want her there because you know, you were still you do not want kind of scary-looking. Can I have the tubes in your arms and whacked out of my mind on on all this pain drugs and your roommate was very sick the floor Hospital scary places. It was a logical in general surgery floor, and it was scary and you know people were crying and moaning all the time and you know, I didn't want to hurt.
26:52 See me within a million tubes in my arm and God cake blood and it smelled terrible and
27:00 And so she came once and I think she was angry about that, but she didn't get on to come more.
27:10 But cuz she talked about that for quite a while. Actually she still mentions how much she missed me when I was in the hospital. I mean last week I can remember she said something about it. Yeah.
27:24 You know, I remember feeling sort of like I'd let her down. You know I said it was going to be okay, and it wasn't.
27:38 I mean it really wasn't I doubt you know.
27:41 I mean I can remember.
27:46 We should wait was she in school so she wasn't real yet. Now. She was home with me. That's right. And I don't know how we got through the days. I mean, you know you went to work and you know, I could watch her and you know set her up with stuff to do and you know read a little bit to her but there wasn't much I could do a lot of favors from a lot of friends who have a lot of friends, especially the the week or so after an infusion, you know, people would would keep her and I don't think she appreciated that very much. She actually to this day doesn't like the Currys very much because you know, every time I go
28:32 For you know an infusion or for one of the surgeries are a biopsy should be you know, she go to the Currys and they're delightful people and she loved them to death right up until the time when she had to stay with him like three times in a route and every time I come back and she come back in the Currys I'd be worse right? And so she doesn't like, you know the relationship in a newly five-year-olds mine.
29:05 Oh, so the hair. Oh, yeah that the thing that we did do well explain to her was that I was going to lose my hair.
29:22 So it was really only one infusion before I decided that I was going to have to take some sort of a collective. My must harling is a very much of a girly girl and I thought that you know her if she takes pride in my appearance, you know, pretty things and jewelry is what's your address I was going to do I heal my hair. So what we did was we got these little safety scissors and we sat in the
30:08 In the bathroom and I cleared off the bathroom counter so I could take a couple of pictures and we put a towel around you and this is Michael Kay Levy. Give Mommy a haircut. She's like really but yes, this is the one time in your life when you can cut Mommy's hair as much as you want and I paid for worst haircuts. It was actually pretty good a beauty supply place and I'd let her choose a color of hairspray and she chose
30:52 Kind of pleased due to the breast cancer Association. She chose the right flaming pink and she she spray-painted your hair pink and then we all went off to Great Clips and your member and explain to the lady that you know, you're going through chemo and you're going to lose your hair. So she's like so she understood. Well first I wanted a mohawk.
31:29 It looked great. Are you kidding me? I thought it was adorable. Okay. Well, you know, I'm that age where you know the class in the room, so I thought it was me. So I told the lady I need my hair shaved off. But but you know do Mohawk first and living wasn't too sure about it at first, you know sure enough. She didn't like them cutting my hair but you know when she saw me and laughing and you know, what do remember though she said why we getting your hair cut hair did I do a good job? So I don't remember that now I just Crush makes the mug. We went to all this work to try to make this a great thing and then she's got this completely opposite spin on it, but I think she enjoys I think she did it once we can be explained as a little more to her. But you know, I guess you don't know if you didn't hear her say that I'm looking at you.
32:29 Yeah, there was a guy in the chair kind of next to me who obviously thought it was aberrant Behavior to shave my head and I wanted to go smack him upside the head and tell him I had cancer but I just looked at him and what you going to do give him your dependent. Clair? Yeah, I think that was a good thing for Liv cuz you know, she got to be part of it and God gives me it was going to happen and and I was laughing. I mean as opposed to crying over my handfuls of hair coming out and helped her a lot to was particularly our attitude to the whole thing and we start tonight with all of our dumb jokes. None of which I can remember now, but I wear a baseball family and I had temporary tattoos of the Cardinals that I put stick on my bald head.
33:19 I let her you know by your bald-headed as fun as we could and it really kind of was in some ways, but I wasn't as fun. As you know, having cancer could be still having cancer.
33:38 You know make it as fun as that. You can actually she went to your last night you last infusion on the Friday, but on that Sunday, which was Mother's Day. You just wanted for a fluid that gave me a certificate of completion and they said that her son say me a song.
34:01 But you know, I think actually I think taking her to that one was kind of good too. Cuz she got to see that it wasn't that big a deal and it was on a Sunday. So the place wasn't busy. I mean we're about the only ones there but on the other hand, do you know that's a long process as you got bored true. So yeah.
34:31 Oh, I think that made us stronger don't you think we're pretty strong before. I mean first time we went out I was teaching you how to dance that was in 2000 how to make a part or apart from that one week when you went out of town to California. I thank ya for business. I mean since our first date there's has been more than two or three nights apart really think that that funny thing about cancer was that you know, when I
35:10 Either one friend. I got married. I thought I'll well we'll just keep keep you know some mystery in the marriage and I wanted to let you know I'll leave it to your imagination with that man. And but, you know, Fred and adopt, you know, taking me to the bathroom and you know, wiping my bottom and cleaning up after me after I threw up all over God's green earth, and I want a lot of mystery last night.
35:40 But it's really not bad doing that kind of stuff though. Thanks, you know, it wasn't what I had it had in mind. But you know, I mean you were always there when you always took care of me while you still have still got that. I'm the provider. I have to have to work in and do my job so that we get paid so, you know, I felt like I wasn't there enough felt, you know the sense of obligation to the other, you know, I wanted to make it as easy on you as I could and I didn't want to impose and and
36:26 You know, you can't I end up in posing for sure, you know, but but
36:33 I think it made us tighter if that's even possible.
36:38 I don't know. I think we were pretty tight before.
36:49 It was some.
36:53 In some ways it was an experience that you and I went through.
37:00 In a way without Olivia because you know, she didn't understand and it was something that you and I really had to
37:09 To carry
37:12 And how to keep her out of in a lot of ways. I think you stay home with her all the time, right? But right after your infusion side usually like on Friday night when I get back I got you when I go pick her up. She and I would love him to go do something for The Saturdays we go to get out of the house that you can have peace and quiet so she and I would go to know the Playland at McDonald's or something and remember that
37:43 You know, I think I'd help her my relationship a little bit.
37:49 Yeah, I love my family. But all I wanted was a quiet house, which is hard when you got two dogs enough 5 year old.
38:00 But you know, we we pulled through.
38:05 And you know that which doesn't mean, you know, it's cliche that which doesn't kill you makes you stronger and now I think you know, it'll help us with everything else that comes up. I mean, we really hit the ground running when it was over. I mean, you know, I started teaching water aerobics. I think the day of or the day after I finished the radiation and I I do the week in row program and I volunteer for everything at Olivia's school. It seems like maybe I'm trying to make it up to her and then ways but you can't ever do that. You don't need that time back, but people keep telling me that she's going to realize that
38:49 I was strong and that's going to influencer. I hope so. I don't know that but I hope so.
39:00 Turf course
39:06 Oh Olivia was adopted from China or adopted her in 2005. She was not quite to when we got her 22 month or two months. Exactly like me. She has my personality down to its way said she look like a long time even though a lot of like so we knew
39:34 We knew we were going to have her for a year almost before we had our little bit longer gestation. In the average scary, you know, when you're going to have a kid and right is 22 months too much is already a person and we were first-time parent off.
39:56 Yeah, she adjusted better than we did. Actually she really did. Yeah, she's a great kid though. She took to his right away and we're like, oh my gosh. What is the ice the Antiques At The Orphanage? She came from long fun Children's Village, which was it no longer exists in its prior form, but it was an American run orphanage kind of a mission early and it employs Chinese. I used to take care of that the kids but it's run by Americans and and so we'd sent them a picture book with labels. And so she knew that I was mama and Fred was Baba and they showed her the picture book every night. And so they got when we came to the orphanage.
40:45 They got the picture book out and they pointed to the picture book and they said Mama and then I pointed to me and I said Mama and she looked at the picture book and she looked over at me. Look at the picture book again, and then you could just see the little gears and she got it and you know that the airline lost our luggage but thank God I had some Cheerios in my purse for the first meeting. And so I gave her, you know, I'd give her a Cheerio and she eat it and she looked at me and we knew we were in when she started feeding them to to Fred though. He was up there with everybody. She's always been like that since day one.
41:32 Silverchair she takes care of people. She does. She know she look to those caring little soul.