Jaime wrote this for Autumn Stankay's Photography Book, Facing Hope, The Cancer Project.
It is beautiful in it's perspective, and I am so proud to share it here.
I am a 26 year old female currently battling ALL (Acute Lymphomic Leukemia) for the third time in my life. After each battle I had thought I won, five to six years passed of healthy living and freedom which allowed me to grow as a person in every way possible. I am looking forward to ending this battle once and for all. Here is my story:
At the beginning of my freshman year of high school, I was a typical high school freshman. I felt that my life was so complete; I felt that I was beginning to live the ‘high school dream’. My ideal world as best as I knew it was soon about to come crashing down. On February 2, 1999, I went to Children’s Hospital in Pittsburgh to have some blood tests done because my parents had noticed a change in my behavior: I was becoming very sluggish, I was tired all of the time, and I was beginning to form a collection of deep, dark purple bruises; all of which I attributed to playing basketball at the varsity level. My parents and I went into an examining room with the expectations to rule out all serious blood disorders. My parents and I were watching the movie Hoosiers as we patiently awaited the results of my bone marrow test; a procedure used to take bone marrow out of a person’s lower hip in order to determine how their blood is being produced. The time was roughly 5:00 p.m. when a team of physicians came into my room and told my parents and me the outcome. Dr. Wollman, the oncologist in charge of my case, told us that the bone marrow test showed signs of leukemia blasts in my T-cells which were a form of Leukemia, a cancer of the blood. This was the very first time in my entire life that I saw my father cry. ALL is unfamiliar to many people; ALL is a rapidly progressing disease that results in the accumulation of immature, functionless cells in the bone marrow and blood. The marrow often can no longer produce enough normal platelets, red blood cells and white blood cells. The lack of normal white blood cells impairs the body’s ability to fight infection. A shortage of platelets results in bruising easily and easy bleeding. My parents and I drove home from the doctor’s office in silence, I was numbed by the news of my illness and my parents were sobbing in the front seat, trying not to let me see their tears. Our car pulled up the driveway to our house, and all I could think about is telling my twin sister and my little brother this horrible news. My parents and I had to pack some bags that night, because the next day I was going to being admitted into Children’s Hospital of Pittsburgh to start treatment. The next eleven months of my life were very difficult, yet they were some of the most influential moments of my life. The experiences I faced during these months became the foundations of how I still view life; these months showed me ‘what really matters’. My individualized treatment plan had three cycles. I stayed in the hospital for ten days when I was first diagnosed, and I was then an outpatient to the clinic that administers chemotherapy for the duration of my treatment; my mother took leave from her job in order to be my support system through every treatment. My first cycle was from February to the end of April, my second cycle was from the middle of June to July, and my third cycle was from November to December. Each cycle consisted of many different forms of chemotherapy; each form of chemotherapy came with a list of side effects, ranging from nausea and headaches to hair loss and muscle decomposition. I lost my hair, lost all of my muscle and was very sick at times. I also gained a significant amount of weight while I was taking steroids to protect my organs from the chemotherapy. The positive experiences I gained from this experience as a teenager outweigh each and every horrific side effect I experienced. The amount of support I received from my family, friends and community was astonishing to me. I received over 200 cards while I was in the hospital and throughout my first round of treatment. The faculty and students of my high school were very supportive. My teachers came into my home to teach me the lessons I missed because I was not allowed to go to school; high schools were breeding grounds for bacteria, and chemotherapy kills all of the cells in your body, the healthy cells and the cancerous cells, so being around crowds was out of the question. My classmates sent me get well wishes; my closest friends would visit me on a regular basis. I discovered these relationships are ‘what really mattered’ to me. As days turned into months, and months turned into chemotherapy cycles; I began to develop a new outlook on life. The relationships I had established with my friends grew into relationships that I cherished deeply. My family became my rock. I depended on my parents to keep me going. I was very gracious for every day I had with my family. My sister was my connection to the social world; my brother became one of my best friends, who watched movies with me on Friday nights when most teenagers my age were at the high school dances and basketball games. My faith had become the backbone of my success in beating leukemia. I prayed every night, not just for myself but for all people who were suffering, and I began to understand the different ways prayer could be answered. These 11 months of my life seemed like eternity at the time but before I knew it I was in remission, and back at school leading a normal life; playing sports, enjoying high school activities, dating, all while having a whole new outlook on life. I finished high school and I was able to obtain a basketball/academic scholarship to attend St. Vincent during the fall semester of 2002, all while remembering ‘what really mattered’ to me in life. Life as a college student was wonderful; college freshmen are given a new chapter in their lives filled with opportunity, education, and independence. I came into college as a student-athlete, rooming with my best friend; my sister, and was so excited to start fresh with people who did not know my past. My freshman year flew by, I was making lasting friendships, dating new people, taking classes, and playing college basketball. Balancing this ‘new life’ with the life I had known was difficult yet so vitally important to me. I was consumed by the fast pace of college having tough exams, a rigorous basketball schedule, and a fun social life. I went home one weekend spring semester ’04 and during my visit home my mother had noticed I was losing weight and thought this weight loss indicated something was wrong with me so she wanted me to go to the doctors to make sure everything was okay. I was the typical stubborn daughter, for the moment consumed in my college life, and told her I was fine. It had been five years since I was in remission and my doctor said once I was past the five year mark I would be considered ‘cured’, so the idea of relapsing had not entered my mind. During Easter break ’04 I began to feel fatigued; I accredited this to the tremendous work load I had to complete before returning to school. My mom kept reiterating her strong intuition that something was wrong, so I decided on the night before Easter to ask God a favor. I prayed that Saturday night and I asked God to give me a sign if something was wrong with me. I did not want a small sign; I wanted something big; something to slap me in the face. The next morning I woke up unable to move my legs. I was in such extreme pain I could not go to church or participate in our family traditions. From that moment on, I knew the leukemia was back; I did not tell my parents because I did not want to ruin the holiday for my family. My mom and sister took me to the doctor the next day, and the diagnosis was that I had relapsed. Immediately my doctor, Dr. Wollman, who I had established a wonderful relationship with the first round of cancer, admitted me to Children’s Hospital for my second battle with leukemia. My second battle was completely different than my first, yet one thing remained the same: the love and support from my family, my friends; both new and old, and the support of my new community, the faculty, my teammates and the students of Saint Vincent. The doctors explained to me two options to approach my treatment this time. One option I had to choose from was that I could go through intensive chemotherapy treatments for two years, having to drop out of Saint Vincent and take classes from home. The other option I had to choose from was to have a bone marrow transplant, and be out of school for one or two semesters. The bone marrow transplant (BMT), which was the quicker route, was the riskier route. The transplant either works or it fails, so I would either survive and be cancer free or die. Facing death at the mere age of twenty was overwhelming to say the least. After a lot of prayer, the support of my family, and the discovery of my sister being my identical twin, I chose the BMT. When a transplant is under consideration, the patient and his or her siblings are tested to determine each of the sibling’s tissue type or human leukocyte antigen (HLA) type. When Jodie and I were born, the doctor told my mother we were fraternal; it was not until the doctors tested my sister and my brother to see if either one had enough compatible HLA types, to match my HLA type, that Jodie and I found out we were identical. A syngeneic transplant is when the bone marrow donor is the identical twin of the bone marrow recipient. Syngeneic transplants are the easiest to manage as a recipient. My treatment plan for therapy in preparation for the actual transplant was three sets of rigorous, in-patient chemotherapy sessions. After the three in-patient rounds of chemotherapy, I was admitted into the hospital July 1st to receive a week of intensive radiation and chemotherapy in order to kill all cells in my body in preparation for the healthy bone marrow I was to receive. The risk of the BMT was if the bone marrow failed to graph in my body; I would not have an immune system to fight of infection. I was isolated to my room in the hospital from July 1st to August 13th in 2004. Isolation was depressing and lonely sometimes, yet being isolated for an extended period of time allowed me to re-find myself, almost as if I was on a retreat. I was allowed four visitors at a time; all who had to be very healthy. The people that visited me became my contacts to the outside world. My friends from high school and college came to visit, along with my extended family and my parents’ friends. My basketball team held a golf outing in my honor to help ease the financial burden place on my family from the BMT. My relationships with people that cared enough to visit me and my relationship with God are both reasons I am able to continue to share this story today. During my month long stay in the hospital everything went fairly smoothly. I had one serious reaction to a drug which put me into anaphylactic shock. As I left the hospital, the car ride from Children’s Hospital in Pittsburgh to my house was the most beautiful car ride I have ever taken. The clouds were extra fluffy that August afternoon and the blue skies were radiant. I had never seen such magnificent shades of green trees and beautiful arrangements of different wild flowers lining the high ways. These were the little things in life that to this day I take time to appreciate. As I walked into my house the plush carpeting on the floor softly greeted my feet. I was overwhelmed with the splendor of my home. My first homemade meal tasted like it came from heaven. Being in isolation had made me appreciate the little luxuries in life. My experiences with cancer for the second time reminded me how short life can be, and how we as people need to make the best of our lives. After the two successful battles, or so I thought, five more years had passed. I graduated from college, fell in love with the man of my dreams, Mark, and landed a teaching job and coaching job at my alma mater. It was now 2010 and life was perfect, I was planning my wedding, remodeling my house, and looking forward to a magnificent future. Then one night after coaching at an open gym for volleyball, I noticed deep bruises on my hipbones from an exercise I was showing the team how to perform. I went and showed my fiancé afterwards and he said I should get it checked out. I did not tell anyone I was going to the doctor except for him because I really thought I was overreacting. My parents were taking my brother back to school because he had just had his 2nd ACL/MCL surgery and I figured they shouldn’t be bothered with more to worry about. I was wrong…the Leukemia was back. It was almost like that day in February, 1999 hearing I had relapse again, only this time even harder because I had already had the bone marrow transplant option. After some discussing with family and close friends, including my newfound friendship in Ellen Toy, and praying; I decided I would remain at Children’s Hospital to go through this last battle of my life. I chose this path because of how comfortable my relationships with the doctors had become during the past 12 years of my life, and how I continue to relapse with a childhood cancer, not to mention the state of the art facility that was just renovated in Bloomfield, PA. Nonetheless, I am now battling cancer as an adult. My life experiences have taught me how to handle it as a child, a young adult, but for the first time ever there are more significant issues involved in my life, and I feel as it is harder almost to deal with as an adult. Mark and I had decided to move our wedding up because we wanted to be married before the next transplant. I married the love of my life, Mark Moran, on May 31, 2010. We have also rescheduled our original wedding plans to have a renewal of vows next July 16, 2011. All parties involved in our original wedding planning were extremely understanding and worked with us on rescheduling our date. Another issue of concern for me is that I now have the whole financial burden of medical bills as that did not exist to me while still on my parents insurance. It is truly amazing to see the affects a community can have on you for these hardships. I have received so many cards, and well wishes, prayers and I am so thankful again for how much people show concern. This round of treatments has been one of the most grueling that I have ever encountered. I have gone through 3 sets of chemo, each while staying in the hospital for about a month afterwards. I have experienced side effects from loss of hair, to meningitis, to staph infection, to mucositis, and several other unpleasantries. I received a bone marrow transplant from an unrelated donor from the National Bone Marrow Registry on August 27, 2010. Today, September 10, 2010, is Day 14 as I am writing my story. I am anxiously awaiting when the new bone marrow engrafts and my body begins to heal and recovery. As I wait, I hope. I hope with the love and support of my family and with the people that have been there for me since age 14 as I was battled this disease for the first time as a child. I hope with the help of my faith in God, which without I would not be strong. I hope with the help of my friends, some old, some new, because these are the people that keep you going. I hope with the help of my community and my work place. Their actions and extending a carrying hand is such a powerful thing. I hope that at the end of all of this, I am another success story and Ellen and I with our volleyball twist on the story can speak out and advocate to other women and cancer survivors that “you can do it too!” As part of the human race we can all strive to achieve perfection, but what good is perfection without having people to share it with. I believe the true meaning of life is to find comfort in the people around us and to help those people in need of help; my support system was with me when I needed them most support; I will be forever grateful for my family and my friends. My faith has grown tremendously throughout these experiences, and I am truly indebted to have such experiences that have allowed my faith to grow so strongly. I have met many wonderful people during my battles with Leukemia and I will cherish these relationships forever. My family has become very close through my experiences with cancer; I am very blessed to have such a supportive family. I believe everything happens for a reason, whether this reason is good or bad, and I believe that these battles I have faced made me a better person. I believe ‘what really matters’ in our lives are the everyday things we take for granted. I believe an important question we all must ask ourselves is not only “What do we value in life?”, but also, “Do I stop and take the time to notice the little things, the things that matter?” I hope the answer to this question is “yes, I do.”