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Sounds of Science is a monthly podcast about beginnings: how a molecule becomes a drug, how a rodent elucidates a disease pathway, how a horseshoe crab morphs into an infection fighter. The podcast is produced by Eureka, the scientific blog of Charles River, a contract research organization for drug discovery and development. Tune in and begin the journey.
Mary Parker:
I'm Mary Parker, and welcome to this episode of Eureka's Sounds of Science.
It has been an exciting year for researchers and patients seeking better methods for sickle cell disease treatment. Two new gene therapies have been approved by the FDA that could be said to cure the disease. The research is still ongoing. For patients, this is life-changing. Joining me today is Charles River employee, Felicia Samuel, whose teenage daughter will soon get one of the treatments herself as part of a clinical trial. Felicia will tell us about her daughter's struggles with this draining disease and what the treatment will look like. It isn't as easy as taking two pills and calling your doctor in the morning. Welcome, Felicia.
Felicia Samuel:
Thank you for having me.
Mary Parker:
Yeah, thank you so much for being here. I'm really excited to hear about this and I'm so, so happy that your daughter has been able to get this treatment. Because I know it can be kind of an ordeal.
Felicia Samuel:
Yes, we are very excited and we look forward to the future and going through this clinical trial. So, this is exciting for all of us as a whole.
Mary Parker:
Yeah, yeah. So, can we start with a bit about you actually? So, what does your job and tale at Charles River and what has your career looked like up until now?
Felicia Samuel:
I am a finishing coordinator here at Charles River Charleston. I've been here for about seven years. I am the one who looks over the product before it goes out. So, once it comes out the clean room, I make sure that the quality is great enough and good enough for our customers to receive them, and we package them up and send them out. It's wonderful being here. I worked in this clean room as well before becoming a coordinator, so I've been hands-on with the products, so this is amazing. And seeing the progress that we do at Charles River is really good, so I love it here.
Mary Parker:
I would imagine working in a clean room and doing any kind of quality check would involve being very precise, keeping things organized, making sure all procedures...
Felicia Samuel:
Yes.
Mary Parker:
Which I'll bet kind of also comes in helpful when you have to deal with doctors and hospitals, because they love nothing more than forms and filling out-
Felicia Samuel:
Absolutely.
Mary Parker:
Yeah. So, can you tell me about your daughter and how this disease has affected her?
Felicia Samuel:
Yes. My daughter's name is Genesis Robinson and she's a 15-year-old teenager. She would consider herself to be a normal teenager, but me being 15 before, I know that it's not as normal as other kids without sickle cell. She's been in and out of the hospitals since before her first birthday, so she's probably more in the hospital than she is outside of the hospital. So, school is not the same as a typical teenager or just a typical child in general for her. She's had several different blood transfusions. As a matter of fact, here at Charles River, they hosted a blood drive for her last year.
Mary Parker:
Oh, nice.
Felicia Samuel:
Around December for her birthday. It was really exciting. She's on about, I'm going to say, five different medications she takes daily just so that she can have a pretty normal day. The winter, summers, all that affects her daily life. She has to make sure she's not overexerted and make sure she's not too hot, not too cold, she's not stressed out. And with being a teenager, stress just comes along with being a teenager as well as school, so we have a lot of adjustments to do with her.
Mary Parker:
It sounds like she has a good mentality about it, though. She considers it her normal and it sounds like she's just kind of going with the flow and doing what she needs to do.
Felicia Samuel:
She's definitely going with the flow and doing what she needs to do. So, this is her normal. She tells me all the time, "Mommy, this is nothing." I'm like, "It looks like a lot." And she's like, "I'm used to this." So, she has a very good attitude when it comes to-
Mary Parker:
That's good.
Felicia Samuel:
Yes. When it comes to sickle cell, she has a great attitude and she's like the person saying, "Mommy, calm down. I have it." I'm like, okay, well, I don't have it and I'm not calm.
Mary Parker:
Yeah. Yeah. Well, I'm actually curious, how does a diagnosis go at that early of an age? Is it one of the first things they looked for based on symptoms or did it take a while?
Felicia Samuel:
No. So, in South Carolina they test every child when they're first born for sickle cell.
Mary Parker:
Oh, okay.
Felicia Samuel:
So, we found out. Of course, they knew in advance. We found out when she was 10 days old at her very first appointment, they let us know that, hey, she has sickle cell. And there's two different types. There's SC, which is the trait, and it doesn't really affect you as much. And then there's SS, which is more difficult to deal with, and she has SS unfortunately. So, we've been dealing with things and on meds and preventative measures since 10 days old, pretty much.
Mary Parker:
Yeah. Kind of already answered my next question, but it seems like sickle cell can affect different people with different levels of severity. So, based on your own experiences, how would you rate how much it affects your daughter?
Felicia Samuel:
It affects her a lot. As a matter of fact, I have SC, so as a child, I went to the same doctor that she was going to previously before they retired, and I was not affected at all. So the things that she's experiencing, I've never experienced, so it was brand new. She's affected every single day. Puberty, just the day-to-day life that we just go have normal is not normal for her. So, she's affected tremendously, but she has a great attitude about it, so that's really good.
Mary Parker:
So, how did you get involved with this clinical trial? Did the doctor tell you about it?
Felicia Samuel:
Yes. So at first, our first option was bone marrow, a bone marrow transplant, but that didn't really work out for her. So then, they was talking about, I think this was always just in the talks but it wasn't, I'm guessing it wasn't ready yet for it to be tried. And so then, after she was in the hospital for about maybe a month and she was having really severe sickle cell crisis, one of the doctors came up to us during our appointment. They was like, "Hey, have you all ever thought about gene therapy?" And at that moment, we didn't know anything about it. When they started to explain it to us, she looked at me and she was like, "Mama, that sounds like I'm going to be a mutant or something crazy." I'm like, "It does sound crazy, but what can we lose?"
We continued to get the information on it and I was like, this seems to be really good. In the midst of getting the information, then I realized that, hey, I work for Charles Rivers. So that was like, oh my God. It was just a no-brainer for me. But then convincing her was a bit... We had to do a lot of convincing when it came to her because she's like, "I'm good."
Mary Parker:
Oh, absolutely. Especially if you're a kid and you certainly don't have a PhD or whatever, it sounds insane. It's like they're taking your own DNA and they are changing it.
Felicia Samuel:
Yes.
Mary Parker:
And then they're putting it back in your body.
Felicia Samuel:
Then they're putting it back. Exactly. She was like, "I don't know."
Mary Parker:
She's absolutely right. It sounds crazy.
Felicia Samuel:
It sounds crazy and she was very hesitant at first. She was like, "Mommy, I don't know." I'm like, "I don't know either but, hey, what can we lose at this point?"
Mary Parker:
Yeah, and she'd already been through a bone marrow transplant, so I guess, we'll get into this, but none of the treatment will necessarily be new to her in that case, right?
Felicia Samuel:
We didn't go through the bone marrow transplant. What they find out-
Mary Parker:
Oh, you didn't? Okay.
Felicia Samuel:
No. Within finding out the information about the bone marrow and what it entailed, we found out that that wasn't going to be a good run for her. That wasn't going to be a good fit for her.
Mary Parker:
All right. So yeah, we can get into it now. How does the treatment work? What will it look like from her perspective?
Felicia Samuel:
Okay, so from her perspective, leading up to the actual gene therapy, she has to get infusions quite often. So, maybe like every three weeks she goes in to get a blood transfusion to make sure her sickle cell count is low enough for the stem cell collection. After they get her sickle cell count low enough for stem cell collection, she will go into the hospital and she will get a stem cell collection. Which they will collect her stem cells over a few days, and then they will send it off to be edited, which is crazy. That takes a while but after that, then she goes back into the hospital and she will receive chemotherapy to wipe out all of her old DNA pretty much. And then they will put the new one back in and we would have to get new vaccines just from when she was a child. And we just start our journey all over again with healing pretty much at that point.
Mary Parker:
I hadn't even heard about that aspect of it.
Felicia Samuel:
Yes.
Mary Parker:
So, she has to go back to like three months, six month, whatever, infancy vaccine?
Felicia Samuel:
Yes.
Mary Parker:
That's wild.
Felicia Samuel:
That's wild. Because her immune system will be kind of weak, she'd have to be out of school for quite some time just until her immune system builds up. So, that isn't exciting for her, but the whole journey in itself will pay off at the end.
Mary Parker:
Yeah. So, did they collect the stem cells from the bone marrow?
Felicia Samuel:
Yes, they still collect the stem cells from the bone marrow and they do more than one collection. I think they have a certain amount that they want to collect, and if they don't get that amount during the first collection, then we'll do another collection within a month, after a month of the first collection.
Mary Parker:
Yeah. I'll bet the doctor was pretty detailed about that with her, because I think that that, from what I've heard, that is not fun.
Felicia Samuel:
No, it's not fun. They have to do a bone marrow sample beforehand, so when she's in the hospital, she'll be in the hospital for a stem cell collection maybe about a week. Because they do a bone marrow test, I mean samples to check her bone marrow, and then they will do the collection over a few days. Then they would build her strength back out before they send her back home, so that takes a while.
Mary Parker:
Well, it sounds like that your doctors pretty well, having worked with him yourself. And you trust them a lot, which is so incredibly valuable when going through something like this. So, that's wonderful.
Felicia Samuel:
It is amazing.
Mary Parker:
So, what else have they told you about what to expect before, during and after the treatment?
Felicia Samuel:
We are expected, during chemotherapy, we are expected for her to lose her hair. So, that's not something she's also looking forward to, but we know that it'll work out. So, she's expected to lose her hair. She can't be in school during that timeframe. And so, we will be in the hospital for at least two months, maybe three or more, depending on how she heals. So, it's a big journey ahead of us, but we're excited to see it all play out.
Mary Parker:
Yeah. Yeah, I can imagine that would be especially scary for a teenager. It's like you're already going through so much.
Felicia Samuel:
Right. And then being a girl, so hair is like...
Mary Parker:
Yeah, that sucks.
Felicia Samuel:
Yeah.
Mary Parker:
That sucks. So, Charles River did do some work on these treatments. How does it feel to work for an employer that helped bring this treatment to your family?
Felicia Samuel:
When I think about it, it really brings me to a loss of words. Coming in to work every day now, it was already important to me. I knew the job was important and what we did, but now coming in, there's a face to everything that happens. What's from the time I clock in and we go inside the room and I see product, I can envision my daughter. This might save her life or this might save someone else's life that's a part of the sickle community. So, being that I'm going to be even just a little bit a part of that is just breathtaking to think about every day. It's like, I'm coming to work to save my daughter's life. I'm coming to work to save someone else's life in sickle cell.
So, that is just... I can't even express how I feel about that. Or when I think about it, I can't even express the gratitude. It just really brings me to a loss of words honestly, to know that when I come to work every day, this is something that's going to help out my daughter or someone else's child that has sickle cell.
Mary Parker:
Yeah. I kind of had a similar revelation during COVID. Obviously I'm not a scientist, I'm not out there actually discovering these drugs, but knowing that I work for a company that worked on so many of the COVID vaccines and treatments while it was happening, it just made me a little bit less despairing, I guess, during the whole process.
Felicia Samuel:
Yes, yes.
Mary Parker:
Yeah.
Felicia Samuel:
The same with me. Even when I had COVID, when we want to get the vaccine I'm like, we worked on this. It is really baffling when you think about it. We're really doing big things when we go to work every day.
Mary Parker:
Absolutely. So, has your daughter made any plans for how to fill her time while she's undergoing treatment? Any TV shows she wants to binge?
Felicia Samuel:
She is a Roblox fanatic.
Mary Parker:
Oh, good.
Felicia Samuel:
She plays Roblox all day long. She's also a big K.C. Undercover fanatic. She loves TikTok, so I'm pretty sure she'll be making a whole lot of TikToks when it comes to just being in the hospital. She will TikTok away all day long. She loves to read. She loves to read horror books. And she loves to shop. Amazon and different online shopping is one of her hobbies as well, so she's going to be occupied a lot during the time that she's feeling well during this process.
Mary Parker:
Nice. That's good. It sounds like she has a lot of interests that can be done from the hospital, which is super convenient.
Felicia Samuel:
It is.
Mary Parker:
Yeah.
Felicia Samuel:
Being that she'll be there for a while, she's going to occupy herself very well.
Mary Parker:
Absolutely. My friends just told me about a book that she might like, I think it's called How to Sell A Haunted House. They said it was good.
Felicia Samuel:
She would love that because she loves haunted. I don't know why, but she's a big fan of haunted books and stuff like that, so that sounds good. I have to bring that to her attention.
Mary Parker:
Yeah, in theory I know that things can sometimes change, but when is she supposed to go in?
Felicia Samuel:
So, hopefully we will restart our transfusions next month, and by the end of this year we will probably start chemotherapy.
Mary Parker:
Okay. Sounds good.
Felicia Samuel:
Yeah.
Mary Parker:
Well, I'm knocking on wood for her, crossing all my fingers and toes, and thank you so much for coming on and telling us all about it. I hope that sometime next year you can give us a really awesome update.
Felicia Samuel:
Yes, and hopefully you all can talk to her yourself, so that'd be great.
Mary Parker:
I would love that.
Felicia Samuel:
Thank you.
Mary Parker:
I want to know what she thinks about that book.
Felicia Samuel:
Yes, absolutely. Thank you so much for having me, and thank you so much for doing this with sickle cell.
Mary Parker:
Thank you.
Felicia Samuel:
Thank you.