This week we present two stories from people telling the first time they crossed paths with science.
Part 1: In the third grade, Lylianna Allala finds out that her partner on the class solar system project isn't allowed to come over to her house.
Lylianna Allala is the City of Seattle’s Equity and Environment Program Manager at the Office of Sustainability & Environment, and has led environment and climate policy outreach for U.S Congresswoman Pramila Jayapal. She is dedicated to working across difference to co-develop solutions that will lead us to a more equitable and just world. Lylianna's professional background includes monitoring the endangered Mitchell's Satyr butterfly, prescribed burning for habitat restoration, trail building in the Washington's Alpine Lakes Wilderness and restoring the West Duwamish Greenbelt, Seattle's largest contiguous forest. Lylianna has a B.A in English from Winona State University, a certificate in Non-Profit Management from Georgetown University and a certificate in Wetland Science and Management from the University of Washington. She is a current leadership fellow with the Henry M. Jackson Foundation. Lylianna is the board chair of Got Green, co-chair of the Open Space Equity Cabinet and board member of Short Run Comix and Arts Festival. A lifelong learner, Lylianna enjoys story telling as a way to develop deeper insights about self and the world around her.
Part 2: After surviving leukemia in her childhood and becoming a cancer research scientist, Vicky Forster finds herself working alongside the same doctor who saved her life.
Vicky Forster is a pediatric cancer research scientist at the Hospital for Sick Children in Toronto and survivor of childhood leukemia. She loves communicating her science, having done two TED talks and she currently writes as a contributor for Forbes. She is particularly passionate about advocating for better research into the side effects of cancer treatment and involving survivors in decision-making about what to research.
Episode Transcript
Part 1: Lylianna Allala
I grew up the eldest of four in the northwest suburbs of Chicago. We were on a half an acre of land, unheard of. I know. But it was beautiful. There was a deciduous forest surrounding our house. There were wetlands, mulberry bushes in the backyard, this big weeping willow tree that I would swing from.
My mom was the kind of mom that would tell my siblings, “Go outside. I don't want to see you back in here until the sun goes down.” So we were left to our own devices.
My brother Louie and I would conduct science experiments in the yard. One of them involved digging up earthworms, putting them on a piece of cardboard and leaving it out in the sun. Our hypothesis… The result, a crispy, crunchy death. We never ran that experiment again. We were horrified.
My favorite experiment was one where I put a glass of water out with a piece of paper in it for several days to see what would happen. A couple days later I came back and there was a spider in the glass, so I successfully grew a spider.
I was always obsessed with nature, the outdoors and experiments. My family was very supportive. My grandmother lived next door to me and they had this beautiful flower garden. She would take me by the hand and walk me through the garden and tell me the names of each of the flowers.
My father would sit my brother and I down in front of the TV and we would watch his VHS tapes of Marty Stouffer’s Wild America. This is my favorite show. And then at school, I would hoard all of the Ranger Rick Magazines in my desk so that I could enjoy them.
So they were all very, very supportive I don't remember having specified science courses in elementary school, but I do remember in third grade, there was a project where we were asked to pair up with another student and build a replica of the solar system. I was super excited.
Lylliana Allala shares her story with the Story Collider audience in the Royal Room in Seattle, WA in June 2019. Photo by Elizar Mercado.
So we were assigned a partner and, at the end of class, we were to connect with that partner and exchange information and kind of get the ball rolling to work together. So I found Mary and we exchanged numbers and I was very excited.
I said, “Okay, come over to my house. We're going to work on this solar system project. My mom and I are going to get the supplies. Don't worry about it.” Very eager.
So I go back home, I tell my mom. We go to Michael's, we get all the glitter paint, all the styrofoam and all the poster board and our setup for this partner project. So my mom calls Mary's mom to set up a time when she can come over.
I remember my mom picking up the phone. I remember a hushed conversation. I remember my mom angrily hanging up the phone. And I remember her going into her bedroom and closing the door. And then she came out and said, “You actually don't need a partner. I'll be your partner.”
So I didn't know what had happened. I knew somehow in this conversation I lost a partner, my mom was going to substitute, and I had a bunch of supplies and glitter paint. The next day at school, I was so puzzled. I didn't know what had happened. I found Mary and I asked her, “Mary, why didn't you come over?”
And she said, “Well, my mom won't let me come over to your house, and you can't come over to mine.”
As an adult, I analyzed and overanalyzed, something maybe I picked up from being a kid. That's what I was doing in that moment. I was thinking, “Oh, my gosh. Is something wrong with my family? Is something wrong with my house? Did I say something wrong? Did I do something wrong?”
So it played over and over and over again. Ultimately, in the end, my mother helped me with that project.
Twenty years later, I asked my mom what did that conversation… how did that go. I go, “Do you remember it?”
She goes, “Oh, yeah, I remember that conversation.”
And she said to me, “They just didn't want you over there and I knew why they didn't want you over there and I knew why they didn't want her to come over to our house.”
Our family was one of a handful of Mexican-American families in the suburbs of Arlington Heights at that time. Forest View Elementary didn't have very many students of color. I feel like I could even count it on my hand. It's not the case now.
But when she told me that, I sat back and I remembered how I felt when I asked Mary why didn't she come over to my house. I’m feeling it right now, this feeling of like your heart is caught in your throat and your hands are clammy. I felt like my face started to burn up and I felt like so embarrassed I wanted to disappear.
So I thought at that time, if I'm not good enough to be a science partner for Mary, am I not good enough to be a scientist? So you're young and, you know, you equate these things, one with the other. And I kind of lived out the rest of my life with that in the back of my head despite the fact that rainbows were center stage in my poems, alligators were the main attraction in my dioramas.
I went on to study English in college and wrote about nature and environment and discovered Mary Oliver who taught me the connection between environment and the literary canon. And Emerson and Thoreau taught me the connection between nature and social justice. And Sandra Cisneros held a mirror up to me showing me that I wasn't the only brown girl in Illinois that saw the connection between nature and culture and the ancestors.
So I studied English and, my last year, I flew to Spain and had the great privilege to study Spanish literature in Granada in South Spain in Andalusia. There, I spent a lot of time eating, reading, hanging out on the beach. And when it was time to come back, I felt this sense of anxiety and remembered what it felt like to be in the suburbs and to grow up in a suburb that was predominantly white. And felt that I had an experience that had expanded my mind in such a way that, to go back to something so constricting even gave me this feeling of like being boxed in.
And so I came back and had decided I needed to go on another adventure. I couldn't stay. I couldn't stay there. And I looked at the AmeriCorps website and had decided to dedicate myself to service and to look for a space that I had never been before.
Lylliana Allala shares her story with the Story Collider audience in the Royal Room in Seattle, WA in June 2019. Photo by Elizar Mercado.
So I looked at New York and Washington. I had never been to either of those states. I ended up applying for a position here in Seattle with an organization called EarthCorps.
So I applied and what was interesting is I will never forget the questions on that application. The first one was what is an environmental issue that concerns me the most. And I remember reading a National Geographic that had outlined the deforestation of the Amazon and the displacement of indigenous tribes there and it struck me to my core for multiple reasons.
At that time, and this is a still ongoing process, but the village of Arlington Heights for several years has been trying to claim my father's home through eminent domain. And as an adult reading back on some of the transcripts for the village of Arlington Heights Council meetings, I would see them refer to that property as blighted. You all know what that means. It was dog-whistle terms, racist terms, and that home was never blighted to me.
Anyone who has ever seen my father's home, it is beautiful. There are cilantro plants and jalapeno plants, flowers of all kinds, this rolling lawn that my father takes great pride in but when we were youth it was meant for us to play pickup games of baseball in, which was awesome.
So at that time, reading about what was happening in the Amazon, very different scale but had hit me in such a way that I felt that was an issue that was of most concern.
The second question was why do I think poor people are poor. Well, institutional racism. Done. No, that was a piece of it, but what had stuck with me was that institutionalized racism and oppression feeds economic disparity and fear and keeps those in power for the pursuit of their own wealth, health and happiness. While the many other of us are struggling, it made me think of a story my grandfather told me.
So when my grandfather and my grandmother moved from Texas to Illinois, I have deep roots in Texas, they lived in a chicken coop. My father was a baby and they told me that my grandmother had to sleep sitting up so that the rats wouldn’t bite my father. And they would insulate the chicken coop with cardboard to help kind of cut through the Windy City winds.
And he told me that story, and he tells me this story frequently, and the reason why he tells me that is so that I will never forget what my family has gone through for me to be here, right? So why are poor people poor?
I answered those two questions and I was very surprised to hear back that I got an interview. It's like, wow! I don't have a degree in science. I read the description for habitat restoration, I was like, “I don't even know what any of this means. Sounds cool. I’m in.”
But they interviewed me and I'm so grateful for that because, for the longest time, I felt that the sciences weren't for me. So many people made me feel like it wasn't for me. I didn't look the way a scientist should look. I didn't have the education or background that a scientist should have. But when it came down to it, I found strength in the science that came from my family and my ancestors.
My poems had always centered around the stories of my grandmother and my grandfather and the herbs and curandero wisdom that was passed down from generation to generation. Things like knowing manzanilla tea was going to help me go to sleep better, or the reason why epazote is put in frijoles is to cut through the gas. Science.
So I found strength in that and I'm grateful for that experience being able to start my service year. That one year turned into 13 years here in Seattle. And grateful that it opened doors for me to become a wetland scientist, to build trails with the Forest Service, to be a wildland firefighter, to work on policy for Congresswoman Pramila Jayapal.
As I was preparing this story, I was thinking back, again, on my mom helping me with that science project. She could have chose to cuss the teacher out. She could have chose to cuss Mary's parents out. There were a lot of choices before her, but what sticks with me is that she chose to sit next to me and outline those stars with glitter paint. Thank you.
Part 2: Vicky Forster
I was 13 or 14. I was at a park with some of my friends. We were playing on the swings. We were on our bikes. We were playing a little bit of football. At one point, I'm standing with my back to the swings and, intentionally or otherwise, one of my friends decides to pull back the swing and release it in my direction. It hits my lower back.
I fall to the ground in absolute agony. I am in a crumpled heap. My fingers are throbbing. My head feels like somebody's sticking needles in it, and I'm screaming. I think I got that friend, all of my other friends have formed a circle around me and I am in agony. I think I was saying I'd broken my back because that's how it felt. After a while, I got up. I sat up and I was okay again.
Now, from that moment on, I knew my lower back was sensitive. There would be times I'm quite clumsy, there would be times I would hit into a door or maybe my lab bench at work and it would just be really, really painful.
More recently, when being intimate with someone, occasionally that bit would get touched and really spoil the mood. Or recently, I had some physio on my lower back for something completely different and the first time that the physiotherapist touched that particular kryptonite spot was not fun for me, the other patrons or his eardrums.
But despite my scientific background, I think I just thought everybody was sensitive in their lower back. It's your spine. It's sensitive, right?
So it's Christmas 1994. I'm in a town in the southeast of England where I grew up and all of my family are there. I should have been downstairs playing games and getting really high from all of the sugar, but I wasn't. I was upstairs on my aunt and uncle's bed, which is where the Christmas party was, and I had a fever. I was napping and both my parents were occasionally coming to check on me, putting their heads around the window.
I had been sick for maybe four weeks with something suspected to be in pneumonia that just wasn't shift, but a week later, I went into hospital and I wouldn't leave for three months. I had been diagnosed with acute lymphoblastic leukemia, which is the most common type of childhood cancer and it's almost a success story, actually, of modern chemotherapy.
Vicky Forster shares her story with the Story Collider audience at the Burdock in Toronto, ON in October 2018. Photo by Stacey McDonald.
90% of children in developed countries now actually survive, which is wonderful. But when I had it 20-something years ago now, it was about 65% survival rate. I knew it too. I was a really, really smart kid. I asked lots of questions and I wanted my parents and the doctors to be kind of honest with me. But the reality was really hard to ignore because my friends, particularly the ones with brain tumors would often go home and just never come back. I knew they had died but, in a way, it was a little bit abstract. I never really considered that that would happen to me. I just kind of got on with it.
There were lots of obviously sad and terrible times on the ward but, oddly enough, there were moments of joy as well. Actually, kids with cancer often get really nice things done for them. I went to Paris in a London taxi before either of my parents had visited Paris. I went to Disneyland in a fleet of London black taxi cabs.
And I got to meet Helen Sharman who was the first-ever British astronaut in space. As a complete space nerd, this was probably the most exciting time of my life. I was the kind of kid who had more glow-in-the-dark stars than actual wallpaper on her walls and I had pictures of the Apollo astronauts, the Gemini rockets and everyone. And she came. She'd been on Mir just a couple of years before and she let me wear her jumpsuit that she'd worn on Mir.
I stood there so proud, eating my space freeze-dried chocolate ice cream which tastes awful. It makes your tongue feel like it's going to stick to the roof of your mouth. It's probably the most excited I'd ever been.
But, obviously, it wasn't all plain sailing. I experienced a particularly harrowing moment. I had been in hospital one day. I had come back quite late at night, I think. I was sitting and playing board games with my parents just downstairs around the coffee table. And I just kept laughing and I kept knocking things over and I was just really weirdly uncoordinated.
So I went to bed. The next morning I woke up and I stood up and I fell over. I tried to call my mom for help and my words came out all mispronounced and all garbled. I was paralyzed directly down my left-hand side. The next thing I remember I was lying in my living room. I guess my dad or my mom had carried me there. The family doctor had rushed round and we were waiting for an ambulance.
I can just remember feeling kind of odd about it all. It wasn't painful. My parents were terrified. That was scary. But I think because I'd had so many months of abnormality being a child treated for cancer, I'd almost become desensitized to the weirdness. It was all new to me and this was just another thing to deal with.
So I got to hospital in London in a blue light-flashing ambulance, which was also quite exciting. I remember sitting in my hospital bed and just seeing all of these doctors crowded around me. Then a few hours later, there was more. They'd actually had to fly a lot of them back from a conference in Paris.
I was actually on a clinical trial at that point for a new treatment, which was a drug called methotrexate which was injected directly into my spine. It was actually used to replace radiotherapy to the brain and spinal cord. The reason for this is to try and get any leukemia stem cells that might be hiding out evading all the other therapies and waiting to come back and cause a relapse. This is the first time this drug had been tried rather than radiotherapy and so it was very new.
And I could tell by looking at the doctors’ faces that nobody knew what was going on because, normally, they would be laughing and joking with me and I'd ask so many questions. And they'd be asking me about my schoolwork and telling me exactly why I needed that drug, why it was red, why it was orange, why that was green, why I had no hair left. But this time, they were looking very seriously at me.
I looked for my favorite doctor in the crowd of faces. She always made me feel better. She was called Dr. Kingston and she was in charge of my treatment. She was a modern-day Florence Nightingale. She had the kindest face you can ever imagine and the softest voice. I looked at her and she wasn't looking at me. She was talking to the other doctors, ordering tests.
And then she looked at me and I could just see in her eyes she was fearful. Nobody knew what was going on.
So a few days later, I'm still half paralyzed. I'm lying in bed and I'm watching cartoons with my dad. He gets up and he says, “Oh, I'm just going to the toilet. I'll be back in a couple of minutes,” and he leaves his chair by the side of my bed.
As I had done many times during that last couple of days, I look down at my left hand and I tried to wiggle my fingers. This time they moved, just a little bit. I tried to move my arm and it didn't really move but I could feel the muscles tensing.
And I thought, “What if I can get to that chair and sit in his chair? By the time he gets back, I've got a couple of minutes. And if I could just be sitting there, smiling at him…”
So I made my way over to the chair and I sit there, smiling, looking so proud of myself. And he opens the curtain and he went, “How did you get there?”
Vicky Forster shares her story with the Story Collider audience at the Burdock in Toronto, ON in October 2018. Photo by Stacey McDonald.
And I just kind of went… and waved at him, just the weakest wave. And I'm looking so proud of myself. He goes and he gets the doctors, he gets the nurses and they come back. Long story short is maybe two weeks of physio but I mostly recovered. The only difference really being now is I used to be completely ambidextrous, and now I'm definitively right-handed. Although, weirdly, I still play pool the wrong way around, which is odd because I played a lot of pool at the hospital so I don't know whether that's some kind of strange hangover from my time there.
So life actually went back to normal. I went to school. I loved science. I did well at school and actually grew up to become a cancer research scientist focusing for leukemia, initially, on my PhD. One day, I was invited to do a talk. This is quite frequent. A fundraising event for a local charity and I talked a little bit about this side effect that happened.
There were lots of people in attendance who had had their own experience with cancer or maybe a family member had had it too and a man came up to me afterwards. He said, “That side effect you had, that methotrexate drug,” and I hadn't actually mentioned methotrexate in the talk, he said, “My daughter, my daughter she had it. She had it too.”
And I was, “Oh.” And I'm looking at him going, “You are not that old.” I said, “How old is your daughter?”
And he said, “Seven.” And he said, “She was completely paralyzed down her left side.”
And I kind of was like, “This still happens 20-something years later? Nobody's figured it out? It isn't just because it was the first ever clinical trial and, since then, people have figured out why this has happened and this people have mostly sorted it?”
And I thought, “Well, no. This isn't okay. I'm not going to just accept that mostly it gets better and some kids actually don't recover very well. I should do something about this.”
So I put my science brain on and I thought, “God, how the heck do I do this?” I actually came to thinking that, unusually, I was a bit of evidence. Not many scientists probably come up with this kind of idea but I was evidence to inform my hypothesis.
And so I sent Dr. Kingston an email. I hadn't seen her in several years because I have my long-term followup in another hospital in the north of England and I was like, “Hello. Do you remember me? I was your patient and now I'm a scientist and I have a question.”
We actually met for coffee on Christmas Eve one year outside the hospital where I was treated at and I sat there with my coffee waiting for her thinking she's probably going to be held up in the hospital or something, or maybe she won't turn up because she will be held up in the hospital.
And this now fairly elderly woman kind of struggles through the door with massive boxes and she comes to the table when she puts them down, and they're my notes. They’re my medical notes. And we spend the next hour, hour-and-a-half going through my medical notes looking for clues to see if I can use information about what happened to me to inform my hypothesis. And I'm sitting there with the lady who saved my life talking to her as a scientist on an equal level and it was quite a remarkable experience.
So after the meeting, I figured out that what I needed to do was grow healthy nerve cells and treat them with this methotrexate drug to see what happened. Now, before that, I'd only ever really used cancer cells because I did a PhD in leukemia and cancer cells are really different from healthy cells in the way that they behave in the lab and what you do with them, so I knew that I needed to grow nerve cells from stem cells.
Now, as I mentioned before, I was a leukemia biologist. Leukemia cells are really easy to grow. They're all round and floaty. They're generally fairly well behaved and you can grow several million of them very, very quickly. I had never in my life grown stem cells. Also, this was a neuroscience project and I have to say I hated neuroscience at university. So I needed help and I needed help fast. I was really lucky that there was somebody in my building who grew stem cells and grew nerve cells from stem cells.
So I asked her for help and I said, “Could you train me to do these stem cells? And if I can do them then I can create some preliminary evidence and some data in the evenings to support a project grant so I could get some funding for maybe a year of work.”
She's like, “Yes, sure. Okay. Fine.”
And it's really hard to grow stem cells. The first time I did it, I killed everything, which is remarkable and it's also quite expensive. But I have to say I'm a lot better at it now, thankfully, because I still do it today as it gets down the road. And we work together. I got some training. I had the privilege to work with some amazing people, including a lot of medical doctors who were also like, “Yes, this side effect cannot go on unexplained.”
We applied for a grant of $100,000, which is not a lot actually in bioscience terms, and we got it. I spent the next year working on creating these nerve cells from these stem cells and treating them with this drug and figuring out what happened to them.
So what happened to my research? Well, I've actually already published a couple of academic papers featuring it, but the big one is yet to come. As many things, it takes time. I'm actually presenting it at an academic conference in Japan in three weeks’ time, at one of the biggest pediatric oncology conferences in the world. I'll be presenting a poster with all my data and I'm hoping that this information will make it less likely that kids like me in the future will go on to experience this side effect.
And on my poster will be an acknowledgment section for everybody who has helped me to do this research, as is typical when we present our work. In that acknowledgement section, I will say thank you to Dr. Kingston.
When I first started presenting the work a couple of years ago I said thank you to Dr. Kingston. Now, I have to say thank you to the late Dr. Kingston because she passed away from an acute illness about a-year-and-a-half ago now. I was actually invited to her funeral and it was about a week or two weeks before I moved to Canada. I was working right up to the wire to try and get this stem cell, nerve cell work done.
I thought about going but it would have meant abandoning the last experiments that I needed for this project, and I couldn't think of a greater tribute to her than staying in that lab and working my ass off and making sure that we got this project done.
So I sat there on a Sunday and I thought of her. And I thought of her kind, amazing face and I thought about meeting her for that coffee which was the last time that I ever saw her. And I knew that she'd be so proud of me.
Now, I don't know whether some people would maybe say, “Well, you had cancer for a reason you had this side effect for a reason.” I'm not spiritual enough to think that at all. I just think that these things happened to a little girl who always wanted to become a scientist and I hope that I've used my training and skills and all the wonderful people I've had support from throughout my life and my career to make it less likely that children like me will go through the same thing I did in the future. Thank you.