Just three out of every million Americans are diagnosed each year with a potentially fatal blood disease called Aplastic Anemia. Edward was one of them. He was 12 years old when he entered the hospital and received a life-saving bone marrow transplant from his littlest brother, followed by months in the hospital and a year recuperating at home.
Once he fully recovered, he didn't look back. Now a healthy high school senior, Edward assumes that everyone around him has moved on, too. But when he decides to revisit this part of his past, he discovers that his each of his family members experienced his illness in ways he didn't (or couldn't) recognize at the time and some effects still linger.
Edward was mentored by Collin Campbell.
WNYC RADIO ROOKIES: MY FAMILY REMEMBERS
First Broadcast: February 24, 2006
REPORTER: Edward Llanos
Running Time: 11:11 (including Host Intro)
TRANSCRIPT (6 pages total)
HOST, INTRO: Out of a million Americans, three will be diagnosed with a rare and potentially fatal blood disorder called Aplastic Anemia. Radio Rookie Edward Llanos was one of them. He was 12-years old when he entered the hospital and received a life-saving bone marrow transplant. Now 17, Edward has friends in high school who have no idea what he went through. Edward decided to retrace what happened…and wound up discovering that his family experienced his illness in ways he didn't (or couldn't) recognize at the time.
Edward, Narration: While I was in the hospital, my mom kept a calendar of everything that had to do with me.
(Sound of Edward and his mother talking in Spanish)
Edward, Narration: February 2001 was the day that I left the hospital and I wrote, let's see: "Leaving the hospital, next step able to RUN. And I underlined Run. I wonder why I did that."
Edward, Narration: My mom held onto a lot strange things from when I was in the hospital: like the bag that held my little brother's bone marrow for my transplant. She keeps everything in a clear plastic garbage bag in her bedroom closet. I was curious to see what else she had. Pills, first aide kits, syringes, and gloves fell on the bed.
(Sound of mom speaking in Spanish)
Edward, Narration: She said she kept this stuff for me to remember and to show my kids one day. I have already almost forgotten most of what I went through, so the objects are like proof of what happened.
Eduardo: You were just complaining to your mother, mostly to your mother that you feel tired.
Edward, Narration: That's my father, Eduardo.
Mom (translated from Spanish): You would tell me that you couldn't go up the stairs at school and at home.
Edward, Narration: My mother took me to the doctor so I could get some tests.
Eduardo: December 8th was the day that we started with this nightmare.
Edward, Narration: That's December 8th of the year 2000. My parents got a phone call saying that I had to go to the hospital.
Eduardo: Once I get to the hospital we were more worried because there was people waiting for us. There was a doctor. She goes straight to us and says that you have cancer.
Edward: What was your reaction?
Eduardo: Well, I just started living in another world.
Edward, Narration: We all started living in different worlds. My dad became like a doctor and my mom became more religious. My littlest brother became like a hero. and my middle brother, well, he fell behind in school. When I first went to the hospital I was scared because I saw all these bald kids and knew they had cancer. I guess a part of me did think I was going to die.
Edward: And what is Aplastic Anemia exactly?
Dr. Garvin: Well, what happens is the Bone Marrow stops working.
Edward, Narration: That's my oncologist Doctor James Garvin. He's been with me since day one.
Dr. Garvin: So if the bone marrow stops working then pretty soon you'd find the white blood count and platelet count dropping fast. It would be like a factory that was making cars, but then everybody stopped working and so no more cars were coming off the assembly line, so the blood is the same.
Edward, Narration: Dr. Garvin told my parents the best treatment for Aplastic Anemia was a bone marrow transplant. Lucky for me I had two brothers who were possible donors.
Edward: What's your relationship to me?
Ricky: Well, I love you, you’re my brother. And you have done a lot of stuff to me and I have done a lot of stuff to you.
Edward, Narration: My littlest brother Ricky was ONLY 4 when I got sick.
Edward: Remember when I was sick, back like four, three years ago. Tell me something about that.
Ricky: You would look really tired like if you were drunk.
Edward: How did that make you feel?
Ricky: Really bad. I was like oh my God my brother's going to die.
Edward: You thought I was going to die?
Ricky: Yeah...
Edward, Narration: I was in shock to hear that, I figured that Ricky didn't know anything about death. Anyway both my brothers were checked to see which one could be my possible donor.
Ricky: And then they thought it was Edwin so they took a lot of blood out of him, a lot of blood. They found out it wasn't, so it was me.
Edward, Narration: My littlest brother Ricky was a perfect match.
Ricky: All I remember was that one doctor, and my mom and my dad, and one night they put me in a room.
Eduardo: They open two holes in the lower back part and from there they extract, Iike half a liter of the soda, I would say the coke, in blood, from the bones in the back.
Ricky: Okay, when I was sleeping, I felt like a machine going in my back, like mmnmnm, it was like a turbo and then I knew they were taking something out.
Edward, Narration: I asked my mom if I was cured after my transplant…
Mom (translated from Spanish): We had to wait.
Edward, Narration: Even when there is a perfect match sibling, 20-percent of those transplants still fail. The first 100 days after the transplant are the most important.
Mom (translated from Spanish continues): These are the most dangerous days because the bone marrow can be rejected.
Edward, Narration: All I really remember about the months after my transplant is doctors coming in and out and me just watching them. I felt like the world just kept moving and I was stuck in one place. My mom told me that I spent weeks without saying a word. I remember my middle brother Edwin bringing me a stuffed pillow that said Get Well Soon. Instead of saying thank you, I kicked him out because I just wanted to be alone.
Edwin: Everybody was telling me a lot of things that you had blood cancer, or some kind of cancer. I felt really sad because I was only 7 years old and at the age 7 I was... I needed my father and mother.
Edward: So, What was your reaction to hear that Ricky had my exact bone marrow?
Edwin: I was like wow! I'm not a match, I’m not going to feel a little bit special more than him.
Edward, Narration: I never asked Edwin what he was going through back then.
Edwin: I thought if I would give the bone marrow I would feel more special, but Ricky got the match. And he's special now to everybody.
Edward, Narration: Seeing everyone call Ricky a "hero" must have made him feel low. Before, I didn't think he cared that he wasn't the donor. It wasn't his choice. After Edwin told me, I felt sorry for him.
(Sound of gun shots)
Edwin (in between sound): If you die, you know it's my turn
Edward, Narration: But I still pick Ricky's side when they fight even if he's wrong.
(Sound of Edwin and Ricky talking to each other)
Edwin: You don't even know what it stands for?
Ricky: Yes. I do
Edwin: Tell me what's it stands for?
Ricky: Especially Stupid People like Edwin.
Edward, Narration: And Ricky takes advantage of my protection... and bothers Edwin.
(Sound of brothers fighting over videogame scene with Edward stepping in)
Edward: What happened? What happened, Edwin?
Edwin: Nah! Nah! This kid...
Edward: Just leave him alone.
Edwin: Nah! I'm going to tell you the story
Edward: Nah, Don't tell me. Shut Up! Just be quiet... leave him alone.
Edward, Narration: I know I won't be able to repay Ricky for saving my life. When I needed him the most he was there.
Edward: Just leave it Edwin.
Edward, Narration: My father was there for me by being on top of everything that had to do with my medical situation. He even kept people out of the hospital room to protect me from catching anything... Some of my relatives felt offended, but my dad has no regrets.
Eduardo: Well, (laughing) I just laughing because probably I didn't pay attention to nothing... But, I probably didn't say to them in a good manner, but I feel like in the end, I have reason to laugh at them because you're alive.
Edward: My mom, well, my mom was always by my side. She told me that reading the bible gave her the strength to believe that I was going to be okay.
(Mother speaking in Spanish in the background): This gave me the strength to go on and to believe that everything was going to be okay.
Edward (translated from Spanish): I told her you seem uncomfortable with this interview...
Mother (translated from Spanish): It's true I feel uncomfortable and sad because for me to remember these sad moments I went through...it's like I'm going through it right now.
Edward, Narration: I remember my parents arguing when I was sick. They tried hiding it, but I knew what was going on. So, I trapped my mom in the kitchen and asked her how their relationship was back then
Mom (translated from Spanish): Normal
Edward (translated from Spanish): The truth.
Mom (translated from Spanish): We argued, sometimes I needed him and he wasn't there.
Edward, Narration: I asked her if they ever thought about splitting up. She stayed quiet.
Mom (translated from Spanish): Yeah, he has his way of thinking and I have mine, we always done what he wants, my word has no say.
Eduardo: At the beginning we were very tight, we were very close, we cry together. We have a very good relations the first 2 months. After that day by day it started to deteriorating. We don't have nothing to say to each other, in other words she was all on you and I was all on you, so I got nothing for her and she got nothing for me.
Edward: Hearing you talk about this it makes me feel like because of me that, my whole family could have been split up and I feel guilty.
Eduardo: I think that it's pretty normal for this type of situation to happen. We weren't expecting to go through all that nightmare. I would never, never put the blame on you, it could happen to me, it could happen to Ricky, to Edwin, to anyone.
Edward, Narration: In reality me being sick did cause some problems. But I know my parents don't blame me for what happened. They're just happy I’m alive.
Edward: Out of all the kids I entered the hospital with at the same time, there was Juan, there was Angel, there was that little kid Joseph, how many of them are alive today?
Eduardo: Alive, well practically, from those kids you just mentioned, no one is alive, just you.
(Sounds of family at dinner)
Edward, Narration: If I had never gotten sick I don't think me and my family would be as close as we are now. Before I would just say "hi" and "bye", now I sit down at the dinner table and I don't take them for granted.
Edward: Okay, Is there anything I forgot to ask you, that you wanted to tell me about or remember me?
Edwin: No. Everything is good. Everything is back to normal. Just the way I want it to be.
Edward: Okay. Thank you.
FOR WNYC, I’M ROOKIE REPORTER EDWARD LLANOS.