I had the pleasure of photographing Brandy Stephens for a test shoot at Bedford Greenhouses, a hidden treasure in Augusta, GA. I knew of Brandy, but we haven’t formally met(went to the same high school and have similar circle of friends). During the shoot, we had a blast and talked about her Leukemia diagnosis and life post-transplant. Her story and infectious positive energy was something that stuck with me, so I wanted to share her story and asked her a few questions.
Cliffnotes on Brandy’s backstory:
Brandy, at the age of 27, was diagnosed with B-Cell Acute Lymphoblastic Leukemia. She was an inpatient for for 165 days (undergoing a pediatric clinical trial, 5 weeks in the ICU, being placed on a ventilator, an emergent stem cell transplant, changes in physical abilities, and memory loss). Since 2017, she’s been working on getting off the anti-rejection drugs. One of the things Brandy and her family are looking forward to, once she reaches a specific part of her medical milestone, is to go to Disney World.
Duane: How have you been since 2017? Mentally? Physically? Medically?
Brandy: Oh wow, sorry I hadn’t updated.. I guess that is a good thing because - LIFE is good.
- Mentally, cancer as a young adult is weird… it’s not a highly talked about age group and there are weird protocols because the doctor’s don’t always know how best to approach treatment. (Usually they are more comfortable with children and/or older adults). It’s hard to talk about the psycho-social stuff because we don’t even know what to think ourselves. I’ve tried to maintain a positive attitude during this whole ride (diagnosed March 2014) because we can’t change the cards we’ve been dealt… it’s about how you play the hand you have. Technically, the docs said I should have never made it out of the hospital, but that my positive attitude is probably what kept me afloat... so I try not to be so hard on myself and appreciate the things/people around me. Lots of venting/ranting with support groups (in person and online) tend to help.
- Physically I am a mixed bag. I try to do 10 times more than people think I should be doing, but I am a busy body. Having issues with tendon contractures, muscle atrophy, and neuropathy make it difficult to be a busy body sometimes.. but I just take the good days with the bad. I am relying on the cane less and less and hope to ‘bid adieu’ to it in the relatively near future. SOOOO if someone wants to help me get my calves built back up - holler atcha girl; that is the one area of atrophy I am having the hardest time with.
- Medically, I really can’t complain at all. I just graduated to a 6 month follow-up status! This is huge.. I will also be celebrating my 5 year “rebirthday” in July! The rebirthday is the date I had my stem cell transplant.. the 5th year is a huge milestone as my chance of leukemia recurrence diminishes exponentially.
Duane: What stuck with me during the test shoot was your infectious positive attitude, despite the greenhouse humidity! Everyone does have their moments in the valley (metaphorically speaking), but we can be inspired by each other's lessons/realizations. What things do you do (ex: practices, traditions, community, etc) to pull yourself from the valley?
Brandy: Thank you... as I mentioned, I just really like to try to stay in the good mindset. It’s way easier said than done, but once you make a habit of it - it get’s easier. I still get a temper (mostly related to my healthcare and if I do not think something is being done adequately). I am not a religious person, but I do believe that there is a much deeper mind/body/soul connection that we realize. Taking a minute to breathe in a time of stress or refocusing your thoughts can make a substantial impact. BUT I do believe that people need to hold on to whatever faith it is that helps them get through the day. I am not sure any of us know what is truly out there, but I do know that the right mindset is 90% of any obstacle.
Duane: Is Disney World still on everyone's radar?
Brandy: Disney World AND now Universal is on Sophia’s radar… she’s in love with Harry Potter, so they will both be a must. I cannot be re-immunized for the Measles until next May so unfortunately it won’t happen until after those are administered. I rely on the herd immunity and the Measles could be highly catastrophic to all of the progress I’ve made with my health.
Duane: Can you give a brief explanation of what Leukemia is and what your specific diagnosis (B-Cell Acute Lymphoblastic Leukemia) is?
Brandy: The National Cancer Institute explains it as, “An aggressive (fast-growing) type of leukemia (blood cancer) in which too many B-cell lymphoblasts (immature white blood cells) are found in the bone marrow and blood. It is the most common type of acute lymphoblastic leukemia (ALL).” Because it is acute (fast growing) means that it can become very fatal very quickly. Typically this type of cancer is seen in children, so treating a Young Adult with this type of blood cancer has its unique challenges.
Duane: What has the development/outreach/education/awareness been since your diagnosis in 2014?
Brandy: I think since 2014 there has big significant progress with the research due to non-profits such as The Leukemia & Lymphoma Society. So many new trials and therapies have stemmed from this organization in that time, I think there were somewhere around 11 new therapies in 2017 thanks to them, but what’s hard to explain is that no two blood cancers are alike. Even someone else with my same diagnosis may have genetic or DNA related factors that make their treatment plan require a different approach. Blood cancer (or any cancer) is not “one size fits all.” Because of this I was actually on a pediatric clinic trial even though I was 26 at diagnosis. Because they didn’t know how to treat my age range effectively and because of how aggressive the leukemia was - they went for the pediatric clinical trial. Pediatric chemo therapies are way more rigorous than adult therapies. So, I was on a combo of somewhere around 9 different chemos (oral, IV, and Intrathecal aka spinal taps) and still needed a stem cell transplant. The chemos essentially killed my bone marrow entirely and I could no longer produce any blood products on my own. I was on blood/plasma/platelets and etc for about 3 months leading to transplant.
Duane: Where can people go to educate themselves more on Leukemia and get involved?
Brandy: Absolutely, I love a few different organizations and they all bring something a little different to the table.
First, there is The Leukemia and Lymphoma Society... which they provide resources, monetary assistance, all the info you could need, social support, and the Light the Night event yearly. (Light the Night is usually held at the Lady Antebellum Amphitheater in Evans - this year it is Oct 4th at 6:00pm! It’s free to attend).
Also, the Dear Jack Foundation is a suppppper cool resource for Adolescents and Young Adults (AYAs) facing cancer.. It’s founded by Andrew McMahon from Something Corporate/Jacks Mannequin/Andrew McMahon in the Wilderness - he was diagnosed in 2005 and ultimately also had a Stem Cell Transplant from a sibling donor. Basically DJF provides social support, retreats, a yoga program in some areas of the country, and something called a “Lifelist”. I actually didnt know about the foundation until after my transplant so I did not take part in the Lifelist, but people who are diagnosed as an AYA have the opportunity to create a wish list or an adult “make a wish” if you will. Anything from an Xbox to play when you’re unable to be around humans because your immune system won’t allow it, to a family BBQ paid for, or a trip to see your favorite band. Really they rely on monetary and requested items to be donated... I saw Andrew McMahon play in Charleston with the VIP treatment - it was amazing how thoughtful and caring they were in person also.
Then there is Be the Match & Delete Blood Cancer which are places where you can sign up to be on the donor registry!!! All it takes to be put on the registry is a cheek swab. You can learn more about the (usually) non surgical approach to saving lives at bethematch.org and DKMS.org.
Duane: Is there a website or blog for people to stay up-to-date with your journey (or if there's anyway to help… GoFundMe, BuyMeCoffee, BedazzleMyCane)?
Brandy: Right now just the facebook.com/helpbrandyfight or i’m more active on Instagram and tend to overshare at @branzillaa (two LLs and two AAs.. there is a @branzilla, but that’s not me.) I have had SO much support from the Evans High School class of 04’ donating, Music event in my honor, and my amazing BFF got an espresso machine funded for me.. (MOMENT OF SILENCE FOR HER AMAZINGNESS). So, DESPITE having a revolving door of medical debt - we are okay and I appreciate that so incredibly much.
I do usually fundraise at Team Brandy for the Light the Night, but they have not opened up the donation side of things through the LLS site yet. I can post the information as it becomes available - Over the past 5 years Team Brandy has raised just over $9500.
And i’m afraid if I ever do get my cane BeDazzled, then I will NEVER get rid of it hahaha.