Camille Butler tells the heartbreaking story of losing her daughter Journey to Renal Medullary Carcinoma (RMC). This is her story.
Journey Bessai GyeNyame Butler
We had a beautiful daughter for 13 years. She was the fabric of our family, the very piece that was unpredictable, interesting and fun to be around. Journey could make you laugh until your stomach cramped and she would leave you breathless with amazement. Her family took notice during her pre-school years. She was a multi-faceted teenager. She spent many years at Thomas G. Pullen School of the Arts where she strengthened her love of friends, teachers, cheer, acting, dancing, singing and rap music. Her presence demanded attention. Journey once, fearlessly stated, “It feels so good to be on stage… I’m not sure if college is for me… I want to be famous!”
In her preteen years, her passions flourished. She began to minimize her extra-curricular activity from Jump Rope and tumbling, to only dance and cheer. As her mother, I promised to make myself available to support her dreams. At the end of her 6th grade year, she had recorded a successful rap video with her brother, “I’m Tellin’” as the 2KS duo.
In the Summer of 2015, Journey began to experience flank pain. It worsened during intense practices/performances. There were signs prior to that time period, but we didn’t know. For example, her feet would swell and she would be in pain after performing. It took an extended time for swelling to go down. She visited the school nurse on a frequent basis for stomach pains. We were told that “her body is probably going through maturity” Every so often, Journey would have an unexplainable, deep cough. We visited the doctor on various occasions, but none of us could figure out what was going on. I probably sound like the worst mother for not being aware of the her signs of illness, but it wasn’t all confined to one occurrence. I live with this every single day. She didn’t have fevers, she wasn’t vomiting, and she was still smiling. Until one day, she wasn’t smiling so much anymore and she couldn’t take the pain any longer.
She began to miss school, lose weight, and lose her appetite. She lost interest in everything. She didn’t care what she looked like in the morning… nearly dragging herself to school. I would complain, “Journey you have to do your hair and why aren’t you wearing earrings!” We were losing our daughter and I didn’t see it. Her father asked me fearfully, “Have you taken a long look at her lately? She’s losing too much weight, something isn’t right.”
We visited the doctor more often. We needed answers. She had urine tests and an x-ray, but it showed nothing of substance. I was relieved, but still, Journey was in pain. On, Feb. 10th, she had an ultrasound where 2 large masses were found; one on her liver and the other on her left kidney. On Feb. 11th, 2016, she was diagnosed with Renal Medullary Carcinoma. I held her in my arms as she cried, “Mommy I’m scared. Am I going to die?” Although the doctors gave us a grave prognosis, I was confident that she would prevail, “I know baby… I’m scared too, but you are going to make it! You are NOT going to die.”
Two weeks later, she began her first chemo treatment. In May we took our precious Make-A-Wish trip to Paradise Island, Bahamas. She cried, “This isn’t fair… I don’t want to die!” I reassured her, “The Creator chose you for this and soon we’ll find out why, but you will NOT die.” On July 7th 2016, she glared in my eyes and held my hands as her father and I spoke to her gently, crying… “dear child you will be fine. It is ok… we’re here baby…. We love you.” Her heart stopped… In only 4 months and 26 days, our baby girl passed away.
Following the death of her daughter, Camille Butler founded an organization dedicated to increasing awareness about the link between sickle cell trait and RMC. Learn more about her efforts here: Journey to Happiness Movement, Inc.