Note: Updates have been added on 4/13/2015 regarding both Bri’s condition and The Ellen Show. In addition, this article has been published in The Huffington Post and can be viewed here. Please visit GoFundMe if you can help Briana and her family.
Call her Briana. Call her Bri. Maybe even call her Bridonkey. Just don’t call her weak.
And with good cause.
Despite being diagnosed with aplastic anemia, a rare blood disease in which the body’s bone marrow doesn’t make enough new blood cells; enduring two bone marrow transplants and multiple rounds of chemo and radiation; and living in isolation because her immune system is so weak, Briana remains a dazzling ray of sunshine.
How is her day, you may ask?
Why, she is in high spirits and getting on rather fabulously, thank you for asking! (She may not have said that exact phrase, but in my mind that’s what I heard. Probably because she IS fabulous).
Briana isn’t naive—she knows the dangers of her illness and the kind of power it has over her life. Her positivity doesn’t come from a place of denial. It comes from acceptance, empowerment and unrelenting hope.
I recently sat down with Briana for an in-depth interview, a plan we masterfully crafted through Twitter. We Skyped, as Briana was still in the hospital with a weak immune system—one week prior, on March 17th, she had had her second bone marrow transplant.
(Side note: The first 20 minutes or so were spent attempting to start a 3-way video chat with me, Briana and her mom, Yvonne. Let’s just say I’m not as tech-savvy as I’d like to think I am.)
From what I had read about Briana, I knew I’d like her. What I didn’t know was that our “interview” would be more like talking to an old friend—a friend you hadn’t seen in years, but could pick up right where you left off. I have a slight notion a lot of people feel that way after talking to Bri.
I knew what I wanted the interview to highlight right from the start—Bri’s strong, quirky, fun personality and stories about her life (past and present). Luckily, that’s exactly what Briana wanted as well. (There were many times in the interview when we were either thinking the same thing, or I asked her a question about something she was just about to mention.)
Previous articles featuring Bri have focused on details about both her illness and daily yoga practices. While it’s important to become more educated about aplastic anemia (both how it affects her personally and what we can do to help the cause), it does not define who she is. Her dedication to yoga is also very impressive, but that is not solely where her strength lies. I wanted to dig deeper, beyond the sensationalism. I wanted to focus on the girl behind the blood disease and those crazy-awesome yoga poses—I wanted to focus on BRI.
So let’s discuss your unabashed admiration for Ellen Degeneres.
Ha-ha, yes! Ellen is just this great person. She just screams happiness. She glows.
Totally. And she dances! Plus she never says mean things. Ever.
I know! She had a “nice-off” with Jimmy Kimmel. It was hilarious.
I haven’t seen that! I’m looking that up right after this interview.
She’s just so incredibly nice. Plus she’s always helping people in need and spreading awareness about important issues. I would really just like to meet her and spread awareness about aplastic anemia. I’m going to Ellen, I am!
And I’m going to help you make that happen!
(Want to help make this happen too? Use hashtags #TeamBri and #BriOnEllen on any Bri-related social media posts, comments and shares! In the meantime, I’ve promised Bri I’d try to work some magic.)
How would your friends describe you? .
They say, “positive….a new Bri, inspiring, hero, strong.” I’m like, really?! I’m thinking, “You never told me this…but I guess you’re my friend for a reason!”
I know now that I am strong. Sometimes you don’t know what strong is until strong is your only option.
Exactly. Where do you get your strength from?
The misconception is that I get my strength from yoga. I love yoga. It’s a challenge, it keeps me determined, and I look forward to it every day. It’s my passion. Running is my passion. Soccer is my passion. Eating is my passion! God is where I get my strength.
I’m going to ask a few health-related questions so we can get more of a background and understanding of your timeline of events and the physical and mental process you’ve endured. However, I want this article to be different than what has already been written about you. I want people to see your personality, YOU. I want people to know Bri.
Yes! That’s what I want too!
So when did you first start to think something was off? That maybe you should see a doctor?
Senior year [about a year ago for Bri] I had quit soccer to focus on school. I started getting huge bruises. I thought, “Hey, I’m not playing soccer, I have basically no physical activity going on…this is weird. Why do I have these bruises?” But you don’t think about that. You don’t think it’s something serious.
In February (2014), there was a blood drive at my school. I wanted to donate. And I could! For the first time ever, I could. I was over 110 lbs., I was old enough. Everything was right, except I didn’t know I had aplastic anemia. They pricked my finger and told me, “Oh no, honey. Your iron is too low.” And it was extremely low.
So I figured, oh, that must be what the bruising is from. I’ll take these supplements, and eat spinach! So I took the supplements and ate the spinach. Friends and family noticed that I was starting to look really pale. Ghost white, no color. The palms of my hands were like chalk. I wore lipstick every day, because my normal Chapstick made my lips look paler.
I started to see more bruising. Huge bruising—my hips, arms, just everywhere. I was extremely fatigued. I thought it was because I was balancing both school and a job. Overworked. I was crazy, taking senior year like it was my college freshman year. I thought I was just pushing myself too hard.
I always had to stop and take a breath on the stairs at school—it would wear me out. At the time, I thought I was just out of shape.
One day I cut myself. It was like a paper-cut type cut. But it wouldn’t stop bleeding. I used up a whole napkin trying to stop the blood. Then I started to get red spots all over. Blood vessels that pop under skin. Petechiae. Anywhere that I would touch. They were just popping up all over my body.
Around this time (March 2014), I went to the doctor and had some tests done.
When did you receive the test results? Did they know right away that it was aplastic anemia?
The results came back the next day. I was on my way to Six Flags in San Antonio with my friends for spring break when my mom called me, crying and panicking. She was freaking out and told me I was severely anemic and that I needed to come home. I told her, “No, I’m fine.” At that point, I still didn’t think it was serious enough to turn around and come back to Houston right away. She said, “No, the doctors said you’re extremely anemic, you need to come back to Houston!” I still didn’t want to turn around—Old Bri was stubborn!
Then the doctor called. He told me I could damage my organs or have a stroke at any moment. My mom proceeded to call a friend I was with and had her convince me to come back to Houston because I needed a transfusion. We turned around and I was admitted to Memorial Hermann. Even at that moment, I didn’t think it was that serious. Then they started talking about leukemia, lupus…really serious diseases! They did a bone marrow biopsy. But they didn’t mention aplastic anemia yet, just because of how rare it is.
What was your reaction when the diagnosis finally sank in? What was the hardest part for you?
I never really let it get to me, what could possibly happen. What really shook me was how it changed and flipped my world around. I wasn’t able to do a lot of the things I loved to do anymore. I was accepted to UT and had to defer. It made me so, so sad. I wasn’t able to go back to school and graduate. I watched my friends and boyfriend (at the time) go through it all without me.
High school was my life. I took high school like it was college. To hear my doctor tell me that I wouldn’t be able to walk at graduation…I saw everybody get to do what I thought I was supposed to do at the time. Go to college, have fun, spring break.
But if I had a choice, I wouldn’t change a thing. I wouldn’t be the Bri I am today. Everything happens for a reason. I truly believe that.
Yvonne, how have you been coping with everything?
When I first found out, I thought, “I can’t believe this is happening.” It’s been really difficult, being the sole provider to the family, managing work, Briana’s appointments, financial strains…new prescriptions every week, emergency trips, doctor’s appointments. Just worrying about money for household items and groceries has become stressful. Luckily, my mom decided to retire and she’s been able to help out a lot with Briana and her appointments.
I still struggle. I’m sad. Sometimes I break down in tears if someone at work asks me how Bri is doing. As months go by, you build up this strength. You see other parents with 6-month-olds who have cancer, they’re going through this too. They are strong, so I tell myself I can do this too. I can’t show my worry and have her worry.
I tell Briana that I get my strength from her. Before, I would often lock myself in the restroom and cry. Now I have peace in my heart and faith in God. I put all my worries into him. I can’t explain it. But my faith has helped me through a lot.
(Please visit GoFundMe if you can help Briana and her family.)
Briana, what is a typical day like for you these days? Or is there a typical day?
Ha-ha, no—there’s not a typical day. I take it day by day. Some days it’s like, “Oh, ok. So my body wants to feel like this today. Ok, go ahead. Bring on the morphine, bring on the ativan. I always remain in high spirits.”
You could be a pharmacist!
I definitely could!
The doctors are always changing my prescriptions, my dosages…there are things I can’t eat that you’d think would be good for me. Certain fruits I can’t eat, because they might interfere with my medication. I can eat nuts, but only if they’re roasted. It’s crazy.
My mom brings me meals because I don’t like the hospital food. I only eat organic now. And I love coconut water! I actually broke down crying when I came home from the hospital because my dad drank all of my coconut water! Ha-ha.
I really have to watch what I put in my body now. And I feel so much better! Both me and my mom have noticed a difference. She’s lost weight, we both feel great, we have more energy. Certain foods we used to eat, we just can’t eat anymore.
Yes! All that stuff, it just tastes too salty now.
It’s great that you still have an appetite!
Yes! After the first transplant I didn’t, but this time I do. Which is great, because I love to eat! I’m obsessed with oranges. I love Popsicles. And ravioli! I went through a phase where I was eating ravioli every day.
What kind of ravioli? Toasted ravioli?!
What?! I was eating Chef Boyardee! I don’t know this toasted ravioli you speak of but I need to try that!
So I’m from St. Louis and it’s kind of our “claim to fame.” It’s delicious. I don’t think I’ve seen it here. If you ever do see it, you need to try it!
What do you want to be when you “grow up?” Has it changed since your diagnosis?
I had no idea at all before. This happened, right? Then I knew. I want to be a healer. I want to give back the way that people have been giving to me. I still don’t know exactly what it is I want to do. My first transplant, I said I wanted to be a doctor. Second transplant, a nurse, because they work more with the patients. I don’t know what I want to do, but I know I want to heal. I’m taking it day by day. My UT acceptance…I don’t know what I wanna do, but I’m gonna go for it. I’m going to do it.
Do you want my opinion?
I think you’d make a great writer. If you write the way you talk, it would be amazing. You have a voice that I think people can easily relate to. Writing is a form of healing too, in its own way. Do you have a blog? You should have a blog!
People keep telling me that! I do like to write. Maybe I’ll be a writer someday. Or write my own book!
There’s this writer actually, he’s a volunteer and he comes around. One day he came and asked me what I wanted to do, and I said poems. I love poetry. This was during my first transplant.
Then he comes around, and it’s my second stay here. He was like “Hey!” and I was like “Oh hey!” because he was dreamy. I mean gawgeous!
I think you need a bell. Excuse me, I need your attention!
So I told him, people actually have been telling me I should write a book. And he said “Oh, ok, that’s cool.” So I keep talking and he’s typing. And I don’t know what he’s doing, I’m just going crazy, right? Then I asked what he was doing and he said, “I wrote down what you were just talking about. Read it!” I was like, “That’s me?!”
He said “Yea, if you could just write like that it would be amazing!”
That’s awesome. And I’m impressed with his quick typing skills!
Ha-ha, yeah! I don’t know how he could keep up with my rambling!
I would really like to write though. My story will be different. My story’s gonna be weird. I’m not a regular teenager.
Weird is the best kind of writing. So if you could do anything outside right now, what would it be?
If I was completely normal, healed, immune system perfect—I’d roll in the grass, in the sun. Jump in a swimming pool. That’s what makes me…wanderlust, is that what they say? I have total wanderlust. I want to travel the world.
Me too! Come with me.
I’d love to!
I can’t wait to start over with yoga, because this journey has even changed my perspective on yoga.
Right now, I’m starting over from scratch. Physically and mentally. Isolation has made me really weak. I love it because I can appreciate everything way more now. Hugging the earth, hugging the trees, hugging everybody. Diving into oceans even though I can’t swim. I want the sun on me constantly. I want to dance in the rain.
People take these things for granted. I want to be able to take a shower without sticking my hand out. Or take a bath and just be able to sink myself in without having to worry about something. I want to go to Forever 21!
You will. All of those things. And Forever 21 is the best!
So how is New Bri different from Old Bri?
Now I believe that I am beautiful. I have this confidence now, an identity I found in God. Things I lacked before. Nobody can tell me that I’m not. Because I know that I am.
Everyone sees it. I know it. I see it. When I look at an old picture, I think, “I don’t know her. She’s a stranger.” It’s the newer, wiser, mature me. I didn’t think it was attainable because I was full of myself, thinking, “Oh, I’m 19, I’m mature.” No, no, no, sweetheart, no, you weren’t. I feel like I can shut up and listen now. I’m more receptive and open-minded.
You know the saying, most people aren’t listening, they’re just waiting for their turn to talk? Listening is a skill. It’s great that you’ve been able to mature in that way.
What has it been like for you, living in isolation?
I miss the little things. I have a 6-month-old goddaughter and I miss seeing her grow up. It’s nice to be able to see her pictures on social media. I call my grandma and grandpa a lot. Sometimes I’ll be up at 4am, and they’re up too. It’s like, “Hey, I’m awake at a crazy hour and I’m lonely too, let’s talk!” They’re hip grandparents. They know all about Facetime and Hangouts.
Sometimes I think isolation can be a good thing, especially for writers. It gives you a chance to reflect on a lot of things in your life. Once you process that, I think that’s where the great writing comes from.
Aside from the isolation, what is hospital life like?
Well, I’m kind of a social butterfly–
Really, you? No way! (Kidding, of course. Briana is the bubbliest human being I’ve met on the planet).
Ha-ha, it’s true! The first night, everyone was kind of quiet. The nurses would come in and out and not say much. By the second night, I pretty much broke everyone down. The nurses opened up and now I know so much about each of them. They all do yoga, which is awesome. One of the nurses has a degree in holistic medicine and knows all about natural health care. Another went to culinary school in the Philippines before she became a nurse.
That’s awesome. Maybe you’d like the hospital food more if she was in charge!
So how did you feel about losing your hair? Was it an emotional process for you?
Losing my hair was liberating! I love being bald. Bald is so beautiful.
At first, it started coming out a little bit at a time. Then one day, in the shower, it all just started coming out at once. I asked my mom for help. I was kind of laughing about the whole thing, saying, “Mom, pull it out! C’mon, just cut it!” She was crying, but I was just thinking, “Get it out, let it be free!”
My head felt so light afterward! I stuck my head in the fridge and it felt amazing.
I love you bald. You look fabulous.
You mentioned a little girl you call Junebug, a 6-year-old who is also in the hospital with aplastic anemia. Tell me more about her.
Junebug is the best. She pretty much has the maturity level of me. She’s incredibly smart. She knows her body. We were talking about medications one day! She’s 6! Because of this process, she’s stronger. She’s going to be a different kind of woman early in her life. It’s crazy. It’s mind-blowing.
I’m her role model. Because of me, she wasn’t afraid to shave her head. She was excited. She thought it was the coolest thing ever. “Being bald is pretty cool!” How many 6-year-olds say that? Her dad was crying and her mom was sad at first but told us that June was so happy that she couldn’t be sad about it. She ran to my room and couldn’t wait to show me her bald head!
(Please visit GoFundMe if you can help June.)
It must feel great to have such a positive influence on her! It would be interesting to talk to her 10, 20, 30 years from now to see what she’s like.
Absolutely. I know I’ll still be in touch with her. You can never lose touch with somebody you’ve had that kind of journey and bond with.
This floor is like family here. You build relationships you can’t build anywhere else. I’ve broken down a lot of them, opened them up. Someone said something to me that made me feel great. “I just look at your door, and I smile.” I want people to feel that way! I want them to know what kind of energy is in here. It’s the House of Happy. (Note to Bri—this should totally be your blog’s name!)
So how can people contribute to the cause and help those who are battling aplastic anemia?
It’s so important to spread awareness, because most people don’t know about aplastic anemia. Go to BeTheMatch.org. There is a huge need for donors.
Because Junebug didn’t have a bone marrow match–not one match in the entire world—they used her mother’s bone marrow for the transplant. They generally don’t like to do that because mothers are only a 50% match. We found out last week that the transplant failed. Now she is in the same exact situation. She needs another transplant, and again there is no match. She has to go through more radiation and more chemo. She’s only 6 years old. But she’s a strong girl.
The process is very simple. Once you are swabbed (which is free), you go into their system. You only donate if you are a match for someone who needs it. There are a couple different ways you can donate.
You are saving someone’s life for free, and you get so much in return. Before this illness, I didn’t comprehend or fully grasp how much one donation helps. How much someone else’s life is in your hands. You are literally saving 3 lives! Every 2-3 seconds someone needs a transfusion. I mean, that’s crazy.
It is. I think there will be many people willing to help now that they know more about aplastic anemia.
(To spread awareness, please use hashtag #BeTheMatch with any related social media posts, comments and shares. Register to be a bone marrow donor at BeTheMatch.Org.)
Is there anything else you’d like to say?
I don’t like it when people expect us to look sick, just because we are sick. Because we’re happy. Junebug is running around these halls, playing. Just because you’re sick doesn’t mean you have to look it. Some situations are more extreme, of course. Others living with severe aplastic anemia can’t do what me and Junebug can do, but that’s not always the case.
Of course. Your illness does not define you.
One more question of random nature. Would you ever go skydiving?
Yes! Yes, yes! I really want to! As soon as I can, I’m doing it.
Me too! I’m afraid of heights and someone may have to push me out of the plane but I’d still really like to do it. How about this—when you can go, we’ll do it together. Deal?
I would love that! Deal!
Awesome. I have a feeling we’ll be pushing each other out of a plane in no time.
I’d like to thank both Briana and Yvonne for their time and for agreeing to do this interview with me. Briana is an inspiring, ambitious, wonderful person and I feel lucky to have “met” her. You’re gonna do great things girl. But you already know that. 🙂
*Note: It’s been 4 weeks since Briana’s second transplant. She is doing very well and was released on Wednesday, April 8th from Texas Children’s Hospital. Briana will be wearing a mask for the next few months to protect her from contracting any illnesses as her immune system is still very weak. A close eye will be kept on Briana for the first 100 days post transplant.
On the same day Briana was released from the hospital, we received a call from The Ellen Show. There is a good possibility Briana will be making an appearance on The Ellen Show when she is ready and able! However, Bri’s health is her first and foremost priority. We will keep you updated with any new Ellen news! This article will be continually updated with any new information.
Again, please visit GoFundMe if you can help Briana and her family. Any help is greatly appreciated.
After our interview, I asked Briana a few follow-up questions through email. The answers below are written directly from her:
How is it that you ended up in Texas Children’s Hospital? We touched on this a bit but I don’t think I got the full story.
So I ended up at Texas Children’s Hospital through connections via my doctor at Memorial Hermann. She was acquainted with Dr. Alison Bertuch, Director of Bone Marrow Failure, and also works in the department of Hematology/Oncology. So Dr. Bertuch is this AMAZING doctor that is known all around the world for her research. And that doctor was going to be my doctor?! Um, yes, please! She is also very well known for her research, specifically in Severe Aplastic Anemia and well…since…ya know, I had Aplastic Anemia, it was only right to get with her!
So my doctor at Memorial Hermann hooked things up! Dr. Beautiful Bertuch, on the other hand, DID NOT have to agree to take me in. I was 18 years old already and could easily be treated by THE BIG PEOPLE HOSPITAL! AHH! Talk about SCARY! So I am forever grateful to the woman in the white coat who wears her heart on her sleeve.
Being nosy—you mentioned you had a boyfriend when all of this started. How has he been throughout the process? Do you still keep in touch?
Yes, I did mention that I HAD a boyfriend, ha-ha. He’s old news. This is a new Bri. 🙂 But he was very helpful in the beginning of my journey, and very supportive. He’d come by and visit me. He brought me flowers one time and they lasted forever, and he’d buy my favorite chocolate ALL the time. I even felt comfortable calling him “My Sugar Daddy,” ha-ha. When I would get negative, he’d tell me to “Stop looking at the negatives. Only look at the positives. I want you to only look at the positive things that happened in your day.” That’s something I’ve carried through. If he hadn’t told me that, I don’t know how long it would have taken me to realize.
But I think we were just too young to understand a situation like this. Nobody’s ready for that. After I got diagnosed, it was like a month of pure happiness between us, and then we both started changing, whether we knew it or not. We were tearing each other apart and calling it love so we both decided to end it. But we do still keep in touch.
Have all of your friendships since you’ve been diagnosed become stronger? Is there anyone in particular you wished would have been there for you more?
Well, first of all, I feel like anyone I’ve “lost” wasn’t really a friend to begin with. But I’ve definitely lost some “friends” to this experience. Not exactly because I’m sick, but because of the new direction my life has taken as a response to being sick. I mean, they’re superficial. For example, one of my friends started the journey with me and I’ll never forget what she and her family did for me. But sometimes, I don’t know how to say it really, but sometimes we call it “fake friends.”
I only know how to describe it in this way: I have this one friend, Maria, who doesn’t treat me like I’m sick. And that makes the biggest difference. If one of my friends texts me or calls me with that voice “How aaare you today? Are you feeeeeling ok?” I’m like, “How are YOU feeling?” Sometimes even my sisters come in for a few minutes and take pictures with me so they can post them on Instagram and increase their likes and then they leave. I know they love me but sometimes I want to tell them, “I’m not your little show-monkey.” I did look like a monkey that day though.
Thank you for your honesty and humor, Bri. It’s been a pleasure. (And monkey? Highly doubtful!)
The interview with Briana and Yvonne Donis was conducted and written by Lauren Kruczyk.