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The Girl with the Lion Heart
"The Resilient Life of a Champion" Vol. 1
By Elvelyna B. Beaubrun
Trafford PublishingCopyright © 2014 Elvelyna B. Beaubrun
All rights reserved.
The Beginning of My Obstacle: Sickle-Cell Anemia
I can remember as a young child growing up, my parents have always taught me to achieve and strive for everything in life to my fullest potential. They have bestowed so many morals and values upon me which have enabled me to be a strong, dedicated, determined, confident, and intelligent young lady that I am today. I have learned so much in my life through struggles, trials, and tribulations that I can do anything. As long as I dedicate, set my mind to it, and work hard in all that I do, I can reach my goals, dreams, and aspirations in life. I have always lived by faith, not by sight, as by Philippians 4:13 which states, "I can do all things through Christ who strengthens me." Throughout my life, I have had many accomplishments in which I am proud of, and these accomplishments define me as the individual that I am today. However, as Wilma Rudolph states, "The triumph can't be had without the struggle," I know what struggle is.
Often and many times in life, there are many challenges that we face. These challenges may be from time to time or on a regular basis. Some may be big or small, and some very different from others. However, the way that we face those challenges defines who we are as a person and makes the accomplishments all worthwhile in the end. I am a firm believer that success is made up of failures, and true success is made up of numerous struggles. Sometimes during the darkest times in one's life, we find it difficult to see. We may ask ourselves, how can we make it to the end? How will we be able to achieve our dreams? How can we conquer? When will there be a way out? When will we make it to the finish line? Many times we want to give up, give in, or fail to make it to the finish line. We even start to doubt ourselves and our abilities to overcome our obstacles. However, in the darkest tunnel, there is a way out; and at the end of every dark tunnel, there is a bright light.
When I was born, I was diagnosed with sickle-cell anemia (SS). For my parents, hearing this news about their newborn baby girl was absolutely heartbreaking. This affected them emotionally, physically, mentally, and psychologically. Not to mention, it was very hard news to digest on site as the doctor released the news to them. They held me in their arms, an innocent baby girl, born seven pounds and fourteen ounces. Big beautiful brown eyes gazing at them delighted to enter the world after such a hard birth. Tiny little fingers grasping their thumbs. Just a tiny baby curled up in a blanket. What did God have in store for this newborn baby girl with such a painful condition? How would life be? What will she have to endure on a regular basis? Will she be able to live a normal life? How will she be able to cope with her illness each and every day? What will happen? Who will she become? What is her destiny?
My mother encountered difficulty during the birth. Having a previous C-section with my older sister when she was born, the doctor wanted her to try to have a natural birth with me. The labor extended from Saturday night of April 11, 1992, until the Monday morning of April 13, 1992. Almost forty-eight hours passed with my mother's water broken and not enough fluid for me to live within her womb. As a result, the doctor requested an urgent C-section on Monday morning, April 13, 1992. I was finally born and breathed my first breath of life. Thankfully, all went well with the C-section, and there I was born on April 13, 1992. A beautiful baby girl cried out as they took me out of my mother's womb, cut the umbilical cord, cleaned me up, assessed me medically, and placed me in her arms. I was named Elvelyna Beatrice Beaubrun.
Following the difficult birth, that was when the doctors and nurses informed my parents of the details regarding my diagnoses of sickle-cell anemia (SS). For newly parents of babies born with sickle-cell anemia, it was important to educate them so that they could understand the complications of this condition. Much care was required in order to take care of me; a lot of understanding and compassion was required in order to meet my medical needs the best way possible. The journey would be a long road ahead. Many struggles were to come, many hospitalizations were awaiting, and many painful crisis episodes were to come my way.
Sickle-cell anemia is a serious and painful disease that makes the red blood cells crescent or "sickled-shape." Instead of the red blood cells being normal, round, and donut-shape, they are shaped like a sickle or banana. Sickle cells contain abnormal hemoglobin called hemoglobin S. In sickle-cell anemia, these abnormal red blood cells pass through blood vessels throughout the body and get sticky and stuck. Because of the shape, they are unable to pass easily in the body, like normal donut-shaped red blood cells. When they get stuck because of the deformation of the cells, it can cause painful sickle-cell crisis or pain episodes.
Red blood cells contain the protein hemoglobin. Hemoglobin carries oxygen throughout the body. In sickle-cell anemia, not enough oxygen is able to be carried throughout the body. In addition, the sickle cells cause a block of blood flow to vital organs and damages the vessels. It also causes an increased risk for infection and causes excruciating, unbearable, intolerable pain throughout the body, especially in the joints. Normal red blood cells live approximately one hundred twenty days.
In a person with sickle-cell anemia, the red blood cells die after just approximately ten days. As a result, the hemoglobin blood count is lower since the bone marrow is unable to make new red blood cells faster. People with sickle-cell anemia thus tend to be referred to as "anemic."
There are many different types of Sickle-cell anemia. Unfortunately, I was diagnosed with the most severe type — sickle cell (SS). All the cells made by my body are sickled-crescent shaped. There were no normal donut-shaped red blood cells flowing through the vessels of my body. My parents digested this information. The facts concerning my condition were straightforward, and being diagnosed with it would affect my life forever. This is when the reality hit home for my parents, for there was a journey unknown for their newborn baby girl.
My parents were informed that I would begin to experience complications at the very age of six months old. Coincidentally, at the very age of six months old, I endured my first hospitalization of pain crisis and fever at the Children's Hospital of Philadelphia (CHOP). Still, as a baby suffering in excruciating pain with my condition. This was just the beginning of my life with this condition. Ever since that very first hospitalization hit, every other hospitalization welcomed its way into my life. At the age of four, I encountered more complications with sickle-cell anemia. I was admitted at CHOP for acute chest syndrome and septicemia because of streptococcus pneumococcus.
My experiences with Sickle-cell anemia kept on coming, and the journey was building up slowly but surely. Despite the trials and tribulations of this disease, it has only made me stronger to strive harder in life and has kept my dreams and goals in sight. However, the road is not easy. The struggle is and will always be in my life, the pain comes and goes, the immediate hospitalizations will always arrive and influence my life forever. Despite knowing that this was a journey in stored, my belief in God, the most important aspect of my life, kept me going each day. I strongly believe that God is a miracle worker and has a plan for me in my life. After God, my family has always been my backbone and solid rock. They have always helped me every step of the way since the day I was born. I honestly could not have made it this far in my life without them.
My hematologist at CHOP, Dr. Ohene-Frempong, Kwaku, has always played such a vital role in my life and has been through this journey with me since I was just a baby. He has always been so understanding and such a supportive, intellectual, conscientious, determined doctor. I knew I could always count on him for everything when I was sick. He always made a way for me as his patient, and I was always a priority. Dr. Frempong has always been in my best interest since I was very young. I have always had confidence in him one hundred percent when it came to my health. I felt reassured that everything was okay during my rough times because I had him as my doctor every step of the way.
My primary care provider, Dr. Debra Voulalas, has always made my medical needs her priority since I was a baby. Her compassion, dedication, and kindness toward her patients have exceeded expectations. Another hematologist, who worked closely with Dr. Frempong, has always been there through the ups and downs during the difficult hospitalizations. She always provided me with comfort and gave me advice and encouragement during my lowest points. I have always been able to count on her, and she has touched my life in so many ways more than I could ever imagine. I value her so much and admire her confidence and her mentorship with her patients. The whole Hematology Clinic Team/Emergency Room/ 5 East HACU (Hematology Acute Care Unit) team of doctors and nurses at CHOP always gave me encouragement and took such great care of me during my hospital stays. It was never easy, but having such a strong support team gave me the courage to face each and every day's adversities in my life. Since I was a baby, they have all played a special role in my life, up until the time I transferred at the age of twenty-two. I have been so grateful to have them as a part of my life. This is my novel; this is my story, my life, my experience, my triumph, accomplishments, journey, and my rise above my obstacle — sickle-cell anemia.CHAPTER 2
Throughout my childhood and grade school, I can remember the difficulties I encountered while being sick, having painful crisis, and missing so many days of elementary school. As a young child, I always loved school with a passion. I enjoyed my teachers, learning, writing assignments, reading, studying, and most importantly, public speaking. It has always been significant to me, and I always felt like that was my element. I was an excellent student, very conscientious, and always on top of getting my schoolwork done. When I was sick, I always made up my schoolwork. I was always determined to keep up and not stay behind with my assignments. It was very hard, but I always tried my best to manage.
Often during my hospital stays at CHOP, I would request that my school sends me my assignments and schoolwork that I missed. My mother always made sure that I received my assignments. She knew how important school was to me. There, I would lay on the hospital bed, an IV in my hand attached to the pole beside my bed, an oxygen mask on my face, a pulse ox on my finger, leads attached to my chest reading the rhythm of my heart on the heart monitor in a blue gown with blue footies on my Unit 5 East, suffering and crying in excruciating, unbearable pain yet completing the work that needed to be done for school.
I can remember so clearly the days I was discharged from the hospital and how I wanted to go back to school the next day, and often, I would wake up, get dressed, eat breakfast, and get ready for school. I was in pain; I felt weak. You could hear the cracking of my joints when I would walk, stand up, or stretch. My back would hurt — my legs, my arms, my hips, my ankles, my chest, my knees — everywhere especially the joints.
In grade school, I can remember being in the school yard with all my friends who did not know about my condition. I would always try to have fun, be a "team" sport while suppressing pain that I was having. Many activities placed a strain on my body such as running, playing dodge ball, and even jumping rope — one of my favorite activities when I was younger. I was very petite during my childhood. I didn't eat much. I was very fragile, thin, short, and the tiniest girl out of my classmates. All the girls were much more developed and bigger than me. I always had to participate in nutritional studies at CHOP in order to monitor my weight and BMI and enhance my appetite in reaching the weight I should have been for my age. I participated in so much nutritional studies for approximately two years. I also had to take nutritional syrups to increase my appetite.
During these visits, I also had a pain diary used to keep track of when I had painful episodes. It was very hard as a child trying to participate in all the activities while having such tremendous pain. There was always that sharp pain that would unexpectedly strike me in my body. A pain that I felt no one could understand, a pain that was unexpected, and a pain that I felt controlled my life. Even through a smile or laughter, I could be restraining the pain striking inside my body.
When playing with my friends in the school yard, I would hold back the pain and try to have fun when all I wanted to do was cry because of the pain I was enduring without anyone knowing. The pain crisis was sharp. One minute I could be jumping rope, on the jungle gym or the swings, and suddenly, a strike! A stabbing sharp knife pain would hit my body. That was the beginning of a pain crisis. They were sharp, sudden, throbbing stabs, which sometimes came or went away. Often when it was worst, it was consistent. Sometimes it started in my legs, ankles, knees, hips, arms, chest, back, and just attacked my body all over and shot to different places. The pain was agonizing and an achy sensation. I would try to suppress the pain when it comes by distracting myself. I tried using hot packs, taking my medications, warm baths; however, that didn't help much. There was not much I could do. Once the pain came, it would just take a complete toll over me as if it owned my body.
I found it hard at times maintaining conversations while in pain or suppressing it when talking to someone. I could feel the pain crisis in my body, and many times, I would try to hold it in. It was difficult. Some days were good, and some could be very bad. Sometimes, my pain would be mild and managed at home. Often when it was more severe, I was hospitalized. My pain would always catch me off guard when I least expected it. When it would come, there was not much I could really do. Often, I had to cry until it went away.
Many times I suffered with this pain on a daily basis. Day and night, I could be sleeping, and it could wake me up in the middle of the night. I would wake up screaming or crying because of the dreadful pain in my joints. Usually, I had to wake up and be rushed to the hospital. Being hospitalized so many times caused me to lose track. CHOP was basically my second home. I would come in and out. One minute I could be discharged and the next minute back again. It became repeated.
Each and every time I was hospitalized, they didn't even need to ask for my name anymore. The ER and CHOP was very familiar with who I was because of my repeated hospitalizations. Having so much pain on a regular basis and being admitted so often wore me out and completely drained my energy. Lying in the hospital bed, receiving medication and treatment was so exhausting. Having to go for X-rays in the middle of the night to make sure I didn't have acute chest syndrome was a protocol when I had chest pain. Whenever I had a severe headache, I had to get a CAT scan to make sure I was not having a stroke.
Antibiotics were given if I had a high fever. Pain medication was given usually through an IV. My veins were tiny, and it was always a pain getting an IV placed. Sometimes, they had to stick me four or five times just to get venous access. Often, they had to call the experts in the IV team to have a line placed. When it was really bad, I had to get an IV through an ultrasound, my wrist, and my feet which were much more painful.
I remember how the doctors wanted to try to insert an IV in my neck, but I could not bear the thought of that. I had to spend hours in pain when it was difficult to get an IV line placed. At one point, the doctors suggested that I get a port to make it easier. However, I was never fond of the idea of getting a port and feared the possibility of getting an infection from it. Although oral medication was provided sometimes, it didn't help much when the pain was at its worst.
I never enjoyed staying in the hospital, although they always took great care of me at CHOP. I have been so blessed with a great healthcare team there. I wanted to be at home, sleeping in the comfort of my own room. There were times I had to stay in the hospital for days, weeks and could not be discharged as quickly as I would like. My parents, Evelyne and Henock Beaubrun; sister, Samantha Beaubrun; and grandma, Jeannette Lambert, always stayed in the hospital with me. My mom has always been my cheerleader, backbone, and greatest mother ever. During the ups and downs, she enabled me to stand strong when I felt weak. She encouraged me to never give up, and she always made me laugh in the hospital with her amazing sense of humor even when I wanted to cry. Her humor is unbearable, and her love has always been unconditional. Most of the nights in the hospital, she spent with me during my entire lifetime. We have been through the tears, the pain, the treatments, the hospitalizations, and the doctor visits — together. When I was weak, tired, and unable to help myself, she would help me get up, get washed up, get dressed, eat, etc. She always made sure I was clean, fresh, and out of bed. She always brought me comfy clothes from home so that I didn't have to wear the hospital gowns.
Excerpted from The Girl with the Lion Heart by Elvelyna B. Beaubrun. Copyright © 2014 Elvelyna B. Beaubrun. Excerpted by permission of Trafford Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Chapter 1: The Beginning of My Obstacle: Sickle-Cell Anemia, 1,
Chapter 2: Childhood Experiences, 6,
Chapter 3: The Rise of a Desire and First Failure, 13,
Chapter 4: The Aftermath of Defeat and the Establishment of a New Inspiration, 20,
Chapter 5: Redemption, 25,
Chapter 6: My Leading Triumph, 27,
Chapter 7: Determination beyond Excruciating Sickle-Cell Crisis, 36,
Chapter 8: Reflection of Success: Never Give Up the Fight, 41,
Chapter 9: Sickle-Cell Anemia Has Absolutely Nothing on Me, 43,
Chapter 10: Summer Break, Not a Break from My Health, 47,
Chapter 11: Victory Is Mine Once Again, 50,
Chapter 12: Resilience, 53,
Chapter 13: Conquering in the Midst of the Struggle, 55,
Chapter 14: My Journey, 57,
Chapter 15: Return to the Place of Defeat, 59,
Chapter 16: The Champion, 63,
Chapter 17: The Conqueror, Pain or No Pain, 67,
Chapter 18: Miraculous Surge of the Underdog, 69,
Chapter 19: The International Havertown Optimist Club Winner, 71,
Chapter 20: Memoirs of High School, 73,
Chapter 21: College Life, 77,
Chapter 22: Destinations, 81,
Chapter 23: Illness Setbacks, 84,
Chapter 24: Strength, 87,
Chapter 25: There's Hope, 89,
Chapter 26: The Test, 91,
Chapter 27: The Girl with the Lion Heart, 93,