Dustin Hays and Hillery Harvey

00:03 Hi, my name is hi. My name is Dustin Hays. I am 44 years old today is May 27th, 2015 and it is our 15th anniversary. We're here at the National Institutes of Health. I'm here with Hillary Harvey my wife of 15 years.

00:29 Hi, my name is Hillary Harvey. I'm 45. Today's date is May 27th, 2015 and

00:39 We are sitting here at the front of the clinical Center at the National Institutes of Health. I'm sitting here with my partner with my husband of 15 years today.

00:51 So I want to just to capture.

00:56 Sort of our our journey that we've had over the last few. So we've been married 15 years.

01:03 But we live together for many years before that. We actually met in 1992 and so now we've been together longer than we've been apart.

01:18 We've also been at NIH for about 10 years and

01:26 It has become while I've lived here in Bethesda longer than I've lived anywhere else, even though when we started out, I thought maybe it was temporary. We came from from upstate New York. I'm where we both had jobs with pharmaceutical companies and we were in Rochester New York in both. Our companies were moving to New York City area and about that same time. We decided to start a family, but you wanted to come and work for NIH and

02:02 I was a little hesitant plus we had a baby on the way and it all seemed really crazy when we both had secure jobs in New York, but you eventually convinced me to come do remember that time. It was a crazy time and a stressful time. I remember thinking the exact same thing that we are leaving our secure jobs in the pharmaceutical industry to to come here and and I'm taking a job at at NIH staying home with our newborn son. So it was all these these new changes.

02:45 And I so you showed up. You took a job here tonight with the Anthony fauci who is as it turns out one of the most visible people working for the National Institutes of Health and did you know that he was

03:03 So famous, I knew who he was but I had no idea how famous and extraordinary until I got here when I took the job and like you said I was 7 or 8 months pregnant. So I waddled into my first day of work heavily heavily pregnant with our son Sawyer who's now almost 11 and are the reason we moved here are the part of the reason I was interested in this job and I'm leaving the pharmaceutical industry was because I've always been interested in

03:41 Public health and infectious diseases and I after graduate school and then working in Industry. I decided I wanted to leave the the lab bench and have more of a 30000 view of all the latest infectious diseases research that's going on in the world and also was interested in taking the job because I it had a policy aspect to it. So I felt like I was having even if it's still very small. I feel like I was having more of an impact on public health in a job working for dr. Fauci and then his office then I did working at the lab bench in the pharmaceutical industry or Academia.

04:25 So I work for the Eye Institute in the Communications office and your Institute is allergy and infectious disease and it over the 10 years that you were working for directly for dr. Fauci. What kinds of remember what all the different things that you saw we don't usually in the eye institute have sudden outbreaks of you no refractive error or something like that. You are a lot of exciting new things. Can you think of any of it was an exciting place to work we

05:03 I was the influenza person and so that meant that he had assigned me to be the lead on gathering information that he needed on influenza and then it as time went by I work on other emerging infectious diseases as well and

05:23 It was an extraordinary place to work. It was very I was very behind the scenes which is where I'm happy being but if it is, you know working for dark patchy. He's very visible. He's a great leader. It's very I was very high-profile work. He is incredibly demanding but as I said before he's incredibly extraordinary and the team of people he's built around him. We're all fantastic able to work with as well. And so they made it fun and I was constantly learning and it was just a very exciting place to to work for for 10 years with through the influenza a seasonal influenza vaccine shortage and then the h5n1 influenza bird flu outbreak in Southeast Asia.

06:17 And the MERS outbreak there's always a new emerging infectious disease that was taking up a lot of the the research time and the doctor Patxi's time as a public voice.

06:33 And it

06:36 Even though he's very demanding person to work for he's also very supportive over the years. He was very supportive of me doing a I was able to go to New Zealand and do a public policy full bright for 8 months 1 year and when I came back he was supportive of me doing a executive leadership.

06:56 Fellowship at the American University and and they're just many other ways that if he was an extraordinary person to work for so.

07:07 I remember I remember when we were all worried about birds though. And you had the lead on that and I remember you were come home every day and thick of it when they were monitoring the

07:22 The virus is it seem to move around the globe and and

07:27 You know, we're all kind of on red alert, but even though we still have I believe they're still infections happening right now and poultry in the US right now, but

07:40 It never really it never really transferred to humans in a big way.

07:47 Is that because of great leadership or is it are we still on for just getting lazy? Should we be on our guard still outbreak such as Ebola and so and then the other emerging infectious diseases that are better and also establish infectious diseases that are causing a lot of disease around the world such a HIV AIDS and tuberculosis and malaria. And so there are many other things to pay attention to besides the threat of a emerging bird flu virus.

08:31 So while you were you were working for dr. Fauci, I was home taking care of the baby and this is seem to all be your grand plan. Cuz I didn't know anything about kids and and a less than a year before Sawyer was born. I was pretty sure that we were never going to have kids but suddenly I'm out of work at home with a baby. And did you ever have any concern that I might not know what I was doing not at all never doubted for once but that you would be a fantastic dad and taking care of our infant son and it was it was an intense time because like I said that yeah, I was getting used to My Job Lot. Apache and trying to prove myself and so I was spending a lot of hours at work, even though I just had Sawyer and

09:22 I really was an intense time. I remember when we were looking for houses. I was trying to find one that was as close as possible to NIH in case something went wrong and you come running over to your office with the baby.

09:38 And that's exactly what you did. We had a lot of picnics on the lawn when he was really little and then the summer time so he was born in June and I remember taking him over next to building 31 where your office is located and let's sit on the lawn and have a picnic and what I didn't realize because I read a lot about taking care of babies before he was born.

10:04 That babies actually don't know that you're doing a really lousy job taking care of her and remember thinking that vividly when I changed his first diaper and we brought him home and it was a sunny morning and he needed a diaper and we had all the stuff there and nobody else was awake, but he and I and so we figured it out together.

10:30 And where we stayed close to NIH we enjoy being so close to work with traffic the way it is here that we met that a top priority a lot of the early days. I was on a nice Campus before I ever began working here and we were there taking walks on campus and we used to go sledding on campus and these big boulders that are part of the security system and kids. I used to never walking on my way on my way to downtown Bethesda on the path it stop and change a diaper on one of those rocks and then when the kids were old enough to chronic lyme around on those rocks and Ivy who's our daughter who said and now still loves to play on this rocks jumping from one to the next.

11:21 So then

11:27 I guess at some point I decided to go back to work and

11:33 I have been working as a lab technician and in science and then took a break to take care of her for two years in and started thinking about going back to work and I'd always wanted to be a writer.

11:47 And you are the one who really convinced me that it was something I could do and even before that you do memory when you sign me up for am I writing course?

12:02 I was like a computer class and I was like, I don't even remember the name of the college but I started writing and eventually dropped out I think cuz I got busy but then in 2006 until he was about to you you arranged a meeting with a couple of riders that you worked with and they explain to me how I could make money being a writer because I had absolutely no clue how that was going to work.

12:41 But I think back a lot of the things that I've done I think.

12:50 For Motivated by you and

12:56 You not even my first job when we first met and you were working as a research assistant before you went to graduate school, and he said he said

13:06 I think I was working at Walmart. This is after college and I met you at a party and you were working for Indiana University. This is in Indianapolis. And he said you were allowed Tech and you were doing science and I had majored in science, but I had no idea that don't that was a job that even existed. I don't know what I thought at that point, but you said oh, but you should maybe you should apply at University maybe even found the job that I had Department of Psychiatry, but I applied and got the job and then then you went off the graduate school and I followed you. I'm done in Iowa in Iowa.

13:49 So in some ways I feel like I feel like

13:53 A lot of my accomplishments in life have been

13:57 Based on your nudging me and

14:02 Without really having any good evidence that these things are possible that you

14:07 You've led me to believe they were possible. And then all I had to do is figure out how to make it work. Like you've always done that.

14:17 Be afraid to ride.

14:21 Imagine

14:23 You know what? I would have accomplished without you. I'm afraid it wouldn't be very much.

14:31 So then 2007 Ivy was born daughter.

14:39 And I did have to talk you into having a second child to remember then.

14:45 I think yes, I do remember that. I do remember that because I was so enjoying Sawyer. It was three at the time I felt like he wasn't quite done being a baby and I wanted to hang out with him for a little while longer before having.

15:02 Before having a second one.

15:04 Two seems like two kids seems more like three kids when you're moving from one.

15:11 And then

15:13 The year she was born was tough. I think because some

15:17 Variety of reasons but once because I just started working finally found work as a writer after doing an internship in science writing and then got a job and so quitting and staying home with Ivy didn't seem like a good option after getting my foot in the door.

15:37 And I he was born with a cleft palate and so

15:44 She couldn't nurse she couldn't suck from a bottle and

15:49 Our first nine months we were worried about her just her health in general. She had remember how difficult it was for her to breathe in her crib. Her nose was always really stuffed up I do.

16:06 And despite all that work you you were planning for the surgery and you even though she couldn't nurse you were storing up breast milk to give to her during her recovery after the surgery where they palate cleanser.

16:26 Which lasted we were in the hospital three days with her and then several weeks after for the incision to heal and then but when we got all that milk out of the freezer, which must have been gallons. It was all she didn't want to drink any other and I guess we've learned that there was that it can go rancid if it's stored. And so listen to We actually tasted at ourselves and we realized it was really literally crying cuz she doesn't like it but I remember when we finally threw all that milk away which was gallons and I just marvel at how much work that must have been in a really busy time.

17:08 It's a rather just because I ended up throwing the milk away anyway, but it also took an inordinate amount of time to just sit and pump and that's time that I could have been holding my new info and also time that I could have been holding my toddler son, you know, I was I was pregnant and so at some point there is no more room for him on my lap. And then when I had her I was either holding her or pumping and so in some ways, I feel like I missed the last year-and-a-half of when Sawyer would actually fit on my lap and I could hold him and cuddle him and now he's is 120 lb and still, you know wants to sit on our lap sometime.

17:49 That hurts.

18:02 So, but she turned out well if she came through the surgery and now she's she's happy and healthy and she's doing great.

18:13 Then in 2010 you came up with an idea of going to New Zealand he found out about a fellowship in public policy and you again convince me that that would be a good idea. Even though you had to unfortunately your company didn't have a policy in place to allow International telework. And so they

18:42 So that you would have to leave your position. If we move to New Zealand for eight months, so is another is asking to make yet another sacrifice and we had a five year old and a two year old at the time and

18:55 Why did I think it was a good idea? I was going to ask you why you felt that was a girl and ended up being.

19:03 Well, I think I really wanted to go to New Zealand but I think you would have gone without me if I'd said no, my sister loves there right away if we ended up going and yeah, so for 8 months, but I quit my job and and then I took care of Ivy mostly sort of started kindergarten there to talk there and

19:33 So she came back with a little kiwi accent when she lost right away, but it ended up despite all the trouble of quitting jobs and we had to rent the house and then pack all our stuff away in boxes. And I think we still have stuff packed away. It's been 5 years, but we still have stuff packed away in boxes and but it ended up being a tremendous experience and we still talk about all the memories. We made in New Zealand and the kids still ask 2 to go back to New Zealand, which is pretty neat.

20:11 And then I'm so weak. We got back from New Zealand and you did a fellowship or actually executive leadership program. I guess I was and what motivated you to do that why why did you suddenly?

20:27 I don't remember how that happen.

20:33 Well, let's see the the time in New Zealand helped me.

20:39 Get out of my comfort zone a little bed and realize.

20:45 But there are other skills that I have that that I'd like to hone and sharpen and so I was looking at different leadership programs and there are a number of those offered in this especially in this town and metropolitan DC but NIH also offers a number and then there are a number of them that are interagency that are offered by like the one that I completed and graduated from is the the key executive leadership certificate from American University. And so I decided I wanted to do that too.

21:24 Broaden and deepen. My my leadership skills my executive leadership skills.

21:30 And then it did really I remember how proud you were and took photographs when you're down for your graduation and is a picture of us standing there at American University and there's a picture of you and your dad it seem like you really

21:45 Maybe even more proud than when you get your PhD do you think?

21:53 Too tired to be proud when I got my Ph.D right now.

21:59 But I

22:01 I was I was very proud of myself and then I

22:06 From there. I started looking into new positions here than IH where I could use some of those skills I had.

22:18 Not actually

22:20 I coordinated Matrix projects Across The Institute and I hid while working for her doctor patchy but I had not actually supervise people in this and the the job that I pursue food and and now working for an associate director of management and operations at the vaccine Research Center, which is part of an IID. I didn't stray too far from next doctor's office and it's been a another fantastic experience are the reason I love that job is the the variety of infectious disease research and vaccines that we do and also the the job incorporates vaccine strategy as well as Personnel issues as well as building maintenance issues. And so I love it because of that variety at the same time. That's probably been the the biggest challenge of the job is to have that

23:19 Different variety of tasks and risks review were when you started the Ebola outbreak was just really getting started and it just so happened that that the vaccine Research Center was working on a vaccine for Ebola. So what was that experience? Like when there was so much, you know that the media was talking about ebola everyday.

23:46 It was intense and high-profile but both of those things I had already grown accustomed to working for productive patchy for 10 years. So I feel like on some level I was able to help navigate the vaccine Research Center through through some of that.

24:07 Because I was used to it on a daily basis. It was it was quite intense. And at the same time we were we had moved houses we had movie about a house and move around the corner from where we are located before and so it was busy getting used to a new job and also getting used to a new house and getting settled in.

24:30 It's a busy time but when we finally bought that house, how did you?

24:36 I mean you had a new job we had to finally were able to buy a house after renting in the neighborhood for 10 years. It seemed to me like we've finally gotten full time work at the NIH Federal employee.

24:54 And so everything seemed to come together and then and then in August you started.

25:00 Noticing I know there's something going on with your vision.

25:05 And

25:08 For much of last fall

25:11 We're trying to figure out what was going on and we found that you had a lesion in your brain.

25:20 And through much of the following we were we're hoping that it was something relatively benign.

25:28 I mean even I remember thinking at one point that we hoped it was something like multiple sclerosis, even though that's a pretty awful disease. But then in December we found out that it was cancer.

25:44 In time

25:46 Stage 4 brain cancer

25:49 House of Comedy of glioblastoma

25:52 And

25:55 I guess since then things have been remarkably different we

26:01 To migrate finally

26:04 Finally worked our way to the top of everything and then and then it all seemed to come Crashing Down.

26:12 Do you remember I'm

26:15 What were you thinking that the day that we?

26:19 Found out about your eye.

26:29 I guess on some level I

26:34 Suspected but

26:38 That would be the diagnosis.

26:41 And

26:43 Had given it a fair amount of thought and

26:50 Plan accordingly accordingly are expected that and so even though it was devastating to hear.

27:00 The truth of it

27:02 I

27:04 I didn't feel.

27:06 Crush somehow I kept waiting.

27:13 To have an epiphany in and I need to change my life and quit work and do this or do that and

27:22 Because that's what you see in the movies and I

27:25 I didn't and then it dawned on me one day that it's because I really

27:32 Love my life the day it it the way it is. I am.

27:36 Enjoy life. Enjoy the life. We've made together. I enjoy our children. I love my work my love where I live. I love that I can walk to work and I can walk to the kids school. And and so there's really nothing major. I wanted to change about my life at all. So I gots helped me deal with the the diagnosis.

28:01 I

28:03 The scientist in me is is just very pragmatic and realistic and so far I haven't.

28:14 Stopped and screamed and cried. I might still one day but I just haven't felt.

28:22 My cat's been a challenge to to hold it together emotionally. I guess you in that.

28:29 Have you been angry of your wondered? Why me?

28:33 Not at all. Like I think that if I if I had a lot of regrets that I might wonder that I think if I were

28:42 Really really young. I I might wonder.

28:48 But I feel like if I if I die at 45 or or while our kids are still young I don't.

28:57 If it

28:59 And I wouldn't call it a life cut short. I just feel like I've done the things I've enjoyed. I have a family that I love I've traveled I've lived overseas I've gotten to do a fellowship then enjoy my work so much because I feel like it has an impact on public health.

29:22 Not really resentful now.

29:26 What about you? How do you feel about it? What did you feel on the day that have the diagnosis and since then?

29:37 No, I guess I had suspected this might be that they're in or the worst fear would come true.

29:47 But I guess in some ways that would have been just drifted.

29:56 Sort of drifting about

30:00 My thoughts and I

30:04 Hey Girl Come

30:06 One hypothetical situation to another

30:12 Panda

30:22 I guess it's a

30:26 I hear

30:28 Had in my mind that we would grow old together, but

30:33 Glioblastoma has where are you?

30:40 Generally poor outcome in so

30:44 I'm going to have to maybe rethink things if we don't get lucky.

30:52 So I worry a lot and in many ways it's hard to imagine life without you.

31:01 One of the questions you wrote down is from where do you draw your strength? And my immediate answer is from you?

31:12 I want to know even though you might not feel strong you are strong and it's the same way with with the kids.

31:26 First one of my I'm actually afraid to die.

31:31 And one of the things I'm afraid like I concerned about dying early is leaving the kids without without a mother but it's kind of the same way when I

31:45 New idea great idea to leave

31:49 So you're home with you and you know, you're a much better parent than but I could have ever been or will ever be so it'll be fine and I'll just because I know they'll be fine. I don't want I don't want to suffer for a long time before I die because

32:09 I don't want you and the kids to suffer through that.

32:15 That would be awful.

32:18 It's pretty tough going.

32:21 From the diagnosis online. We you had your biopsy then.

32:26 The incision where they did a biopsy which for some reason we thought that it would be just a tiny little hole and they would use a needle to take out some tissue but it was actually a hole that they in the hole that they use was about the size of a dime or nickel I think and then the incision became infected and and you were in the hospital for several days recovering from that. We got to celebrate Christmas with you home, but then after that you you came to the NIH for surgery after the

33:00 The first doctor the doctor who did the biopsy didn't think that additional surgery would be at all helpful.

33:08 And I'm you got care here at and I asked you.

33:12 Did you have any thoughts on what it was like to be a patient here versus an employee?

33:20 It was

33:24 Surreal to be a patient instead of a instead of an employee, but it was even though it was surreal. It was also.

33:35 Exactly what I expected because the people that I've worked with us here and ihr all so devoted and

33:45 Extraordinary and intelligent

33:50 And caring

33:53 And they're all here for the right reasons and so my experience as a patient was exactly the same the the doctors and the nurses and technicians the name Ennis traitors, everyone.

34:08 Upheld those same standards that I've experienced working.

34:14 But this amazing team team of people here at the NIH.

34:18 So you ended up staying went when they removed one tumor?

34:24 You actually have to trim which one is an inoperable tumor because of its location in the other one is they thought that they could take that one out and that was a fast-growing tumor that grew rapidly by the time they removed it and end up being brutal because you had meningitis from that happened after the surgery. So you had an infection in December than the surgery and then meningitis and you were in the hospital again for 12 days.

34:55 We had no idea that the surgery would be that brutal.

35:02 Do you think you would have gone through it if you knew how tough it was going to be?

35:07 Yes.

35:09 Yeah, I think it's if you'd asked me a week or two after the surgery.

35:14 I probably would have answered. No, no way I never going to do that again.

35:20 But

35:23 It came out. Okay, and I'm stealing myself for the likelihood that I'll probably need another as glioblastoma recurs. I'll probably need to go through this again.

35:35 And I'll know a lot more about what to expect this time, but I think

35:43 It was it was brutal and I expected that I remember being so scared the night before the surgery.

35:50 Remember that was scared of anything.

35:54 Long time I ever

36:04 Will face with the

36:06 The possibility of not being able to beat brain cancer.

36:13 Not being able to see your children grow up.

36:19 How would you how would you want them to remember you and and is there any advice that you would want them to know?

36:28 Well

36:30 I

36:34 I'm very professional about being outside and and about as I love music. I love travel.

36:43 I'm passionate about public health and I love dogs. I think that if they

36:51 While they're growing up and then

36:55 When they're grown up every once in awhile just for a moment if they can be passionate about or enjoy any of those things that they

37:05 Will feel

37:07 That's an opportunity for them to feel connected to me and

37:13 And understand that in a way, I'll never really leave them.

37:18 And I think one of the

37:22 That there's a quote by Eleanor Roosevelt that has helped me through my life as I tackled graduate school and fellowships and and working at niaid and in the new position at the vaccine research research center, and I'll just read it really quick. But that's one thing piece of advice. I'd like to pass along to them as we gain strength and courage and confidence by each experience in which we stop to look fear in the face. We must do that which we think we cannot.

37:59 I just love that quote by Eleanor Roosevelt and she also said no one can make you feel inferior without your consent. And so those are two things that I would love to.

38:10 Pass on to my children to to think about when they're feeling insecure or

38:17 Small or when they're nervous about

38:22 Asking a girl out or

38:25 Giving a book report or interviewing for a job. I want them to

38:31 Remember

38:33 You take that advice that you've really embraced and lived by.

38:39 Tender

38:43 How to accomplish everything that you've accomplished

38:47 Attorney

38:49 Any advice that you would be for me or for anyone else?

38:55 I think for you I

38:59 I would say how important it is.

39:03 For you to keep lines of communication open between you and the kids always.

39:13 So that

39:15 So, you know what's going on in their lives and vice-versa and said that they'll always let you in.

39:39 What do you think is the hardest?

39:43 The hardest thing about living with cancer, but particularly this cancer.

39:53 One of the challenges is for me is that I I look fine. I sound fine.

39:59 In many cases I act fine.

40:03 But it's somewhat of an illusion because I feel so.

40:09 Exhausted and overwhelmed so much of the time.

40:14 And so that's that's one challenge, but I also feel lucky in some ways because I

40:23 Have not been in a lot of pain. I have not had.

40:28 Uncontrollable nausea

40:33 So in some ways it's it's better than I expected actually.

40:40 It's better.

40:42 Better than I would expect and I'm speaking right now. Who knows? What's what's coming up, but right now I've been very thankful that that

40:52 Even those has been a traumatic experience for all of us. It's also brought blessings. You know, that's been so remarkable how our family and friends have have just

41:04 Embraced us and then right there to help us and I've spent since I'm home a lot. I have spent more time with my kids and I would have been able to you know, and this is their last year of being in the same school together Elementary School 1st and 5th grade. So it's been need to be around after school and be around in the mornings sending them off to school and I wouldn't have had that.

41:30 And I just spend.

41:31 Working working working on Ebola and and and other things

41:37 How do I make sense to get back to work? I think we've grown closer to and

41:43 Since you became sick, I remember in August when we first you had an MRI and that's when we learned that there was a lesion of some kind of didn't know until later there was cancer of it.

42:00 Just kind of falling to pieces and realizing.

42:05 How all the things that I had worried about all the frustrations and all all these things that we're making me impatient really just

42:16 Didn't matter

42:18 In Dallas, I'm in so in some ways. I think I let a lot of those.

42:25 But a lot of those

42:28 Thoughts

42:29 What can be I can float away on your own?

42:35 Turn down.

42:38 I'm grateful for everything that we have.

42:43 Cuz you said the support from family and

42:46 Panda

42:49 My greatest hope is that

42:52 Will have

42:54 Many more years to enjoy

43:00 That's my greatest. Hope to but I know you'll be okay if we don't.

43:08 I love you. I love you, too.