Wednesday, September 10, 2008
Essay #1 "When Bad Things Happen To Good People"
When Bad Things Happen To Good People
About six years ago, my cousin, Jenny Shields, died of a very “rare, inherited bone marrow failure disease” called Fanconi Anemia. Jenny is 1 of only 3,000 known cases in the entire world today. She was only twelve years old when she died and I was only thirteen. When Jenny was born she was not much bigger than a Barbie doll in size and they never could figure out what was wrong with her. Jenny was diagnosed at the age of ten and was on a waiting list for two years for a bone marrow donor. Time meant everything.
Jenny’s bone marrow was supposed to do so much more than it was. It was only producing five percent of the blood cells it need to and if she did not get a bone marrow transplant soon then she would run out of time. The doctors told her that her white counts were so low that even if she contracted something as little as an ear infection, it could be critical. The process that Jenny and her parents had to go through was so intense and intricate that I could not see how anyone could go through such a thing. The family tried a number of procedures, but the bone marrow transplant was the only hope left. Despite that the disease was robbing her of life’s “sustaining blood cells”, she still seemed as happy as ever.
Jenny always looked toward the better side and had hope for her condition. Her joy and great presence made it so much easier for those who surrounded her in this sad time. She could no longer go to school, doctors were telling her they could not help her, and she did not even know if she had a fighting chance, but somehow she stayed strong. Jenny wanted to be a veterinarian and saw herself with a future. She wanted to be a normal child and grow up. She had the mindset that everything would be okay and some how she made everyone believe her.
There was a group of older ladies in the community around Louisville, Kentucky, where Jenny was from. The women each wrote a prayer on a small quilt square. They all pitched in and made her one big quilt with each of their quilt squares. Jenny loved the prayer quilt with all her heart. It was beautiful and full of the nicest prayers I had ever heard. Once, when Jenny was asleep my aunt, Jo Ann, took it from the bed and washed it. When Jenny woke up, she found out and was heartbroken. Jenny thought that because my aunt washed the quilt then all the prayers were washed away along with it. Jenny usually was able to hide hear fear in the inside, but when it came down to it she was even more scared than everyone else.
Since most doctors knew very little about her disease, she was forced to an out of state specialist for her treatment. In the whole United States, there were only two doctors who specialized in Fanconi Anemia and could give her the help she needed. One was in Memphis, TN at St. Jude and the other was in Minnesota. Jenny and the family traveled to Minnesota to meet with the doctor who specialized in her case. A doctor who knew a great deal about Fanconi Anemia was a wish come true.
The first procedure they tried was having my aunt get pregnant so they could use the baby’s stem cells from its umbilical cord to cure her. My aunt was not capable of having kids anymore; therefore, they had to artificially inseminate her other daughter’s egg, along with my uncle’s sperms, into my aunt. Every time they went through this and the baby’s stem cells did not match they had to terminate. My aunt, Jo Ann, went through this procedure five different times. One of the times she was pregnant with quadruplets, but none of them matched. The last time they tried, the baby finally matched and everyone was so happy, but Jo Ann ended up having a miscarriage. Money was becoming a very big issue and they could not afford to keep doing this emotionally or financially. Can you imagine how devastating that must be? To be so close to saving your own daughter and being denied happiness again?
After they had lost all hope on that course of action, everyone was hoping for a miracle. Jenny was getting very sick and needed some type of cure soon. They never found a perfect match for a bone marrow donor, but they did find someone who was as close as they were going to get. They set the time and date for the bone marrow transplant for the very next day. Finally, more hope at last.
I remember flying in and going to see how Jenny was. The hospital was so white and huge. It was crowded, noisy, smelly, and full of hurt and sadness. How would anyone be happy spending their last days in that environment? Jenny was already in surgery when we got there. It all happened so quickly. We received the phone call the night before and the next night we were there. No one had any idea what to expect. The next day everyone got to see her and find out how she was. She seemed well, even great for someone who had surgery just hours before. I only got to see her for a minute, but I still could never forget it. I was so relieved that she was okay. I could not bear to loose not only my cousin, but a great friend.
The whole day everyone kept their hopes up that everything would work out successfully. We had to wait and see if her body would accept the new bone marrow and it seemed as if it was going fantastically. That night it went bad. She hit rock bottom. Jenny all of the sudden became dreadfully sick. I was back at the hotel. I remember hearing the phone ring. Immediately, we knew something was wrong. My grandma called and said it did not look good. We kept on praying. Then, the phone call came. That one phone call I would never wish upon anyone. Jenny was dead and it drastically changed everyone’s life at in an instant. Together my mom and I cried. It could have been for minutes, maybe even hours. I had no idea what to do, or how to react. All I knew was it had to be a lie. It had to be a joke, an awfully mean joke, but it was not. All hope was gone forever. Jenny, my cousin, my friend was gone forever.
The next week was Jenny’s funeral. My mom, my sister, and I flew to Kentucky, where Jenny lived, and my dad drove from Arkansas to meet us there. Once we got there we went to stay with my grandma and the mood around us was indescribable. It was silent and sad. I was only thirteen and did not know if I did not know how to accept that she was gone for the better and that God wanted her to live a better life there in heaven. Should I be angry with him? When someone so young, so close, and so wonderful is taken away from you, it is hard to know how to react.
The day before the visitation, we went to my great grandma’s house to see everyone and see how everyone was doing. We ate dinner and the whole time everyone looked so depressed. The family talked about how Calvin and Jo Ann, Jenny’s parents, were doing and it seemed like they were definitely not good. Jo Ann could hardly speak to anyone and Calvin would not speak at all. They both were in a major depression and the next day, when I saw them at the visitation, I immediately began to cry. Calvin hugged me. He knew how close Jenny and I were and we were almost the same age. I was surprised he even came up to me. I believe it was the saddest time of my life.
Before the funeral the next day, they played a slideshow of Jenny and there was not one dry eye in the funeral home. This big vintage, distasteful funeral home was already sad looking enough. The tears and closed casket did not help matters. The people were all so sad and I knew exactly where they were coming from; I was sad too.
As everyone drove to the grave yard that stormy sad day, I could not think of anything else except what had happened. Jenny was such an amazing young girl. She was nice to everyone and she did not ask for much. All she wished for was to be a normal child. Everyone gathered in the cemetery to watch her casket be carried to the gravesite. All the people there came around and put a flower on the casket. As tears ran down everyone’s faces, the preacher said a prayer and a few nice things about Jenny. We all watched as the casket was lowered into the ground. At that time, I knew Jenny was watching down from heaven and that she was in a better place.
The loss of my cousin, Jenny, hurt her friends, family, and even people who barely knew her. She was the girl who would have made a great impact on the world. Still now, I think of Jenny every single day and I wish there could have been a way for me to make a difference, to save her, or at least say goodbye. Why do bad things have to happen to good people?
About six years ago, my cousin, Jenny Shields, died of a very “rare, inherited bone marrow failure disease” called Fanconi Anemia. Jenny is 1 of only 3,000 known cases in the entire world today. She was only twelve years old when she died and I was only thirteen. When Jenny was born she was not much bigger than a Barbie doll in size and they never could figure out what was wrong with her. Jenny was diagnosed at the age of ten and was on a waiting list for two years for a bone marrow donor. Time meant everything.
Jenny’s bone marrow was supposed to do so much more than it was. It was only producing five percent of the blood cells it need to and if she did not get a bone marrow transplant soon then she would run out of time. The doctors told her that her white counts were so low that even if she contracted something as little as an ear infection, it could be critical. The process that Jenny and her parents had to go through was so intense and intricate that I could not see how anyone could go through such a thing. The family tried a number of procedures, but the bone marrow transplant was the only hope left. Despite that the disease was robbing her of life’s “sustaining blood cells”, she still seemed as happy as ever.
Jenny always looked toward the better side and had hope for her condition. Her joy and great presence made it so much easier for those who surrounded her in this sad time. She could no longer go to school, doctors were telling her they could not help her, and she did not even know if she had a fighting chance, but somehow she stayed strong. Jenny wanted to be a veterinarian and saw herself with a future. She wanted to be a normal child and grow up. She had the mindset that everything would be okay and some how she made everyone believe her.
There was a group of older ladies in the community around Louisville, Kentucky, where Jenny was from. The women each wrote a prayer on a small quilt square. They all pitched in and made her one big quilt with each of their quilt squares. Jenny loved the prayer quilt with all her heart. It was beautiful and full of the nicest prayers I had ever heard. Once, when Jenny was asleep my aunt, Jo Ann, took it from the bed and washed it. When Jenny woke up, she found out and was heartbroken. Jenny thought that because my aunt washed the quilt then all the prayers were washed away along with it. Jenny usually was able to hide hear fear in the inside, but when it came down to it she was even more scared than everyone else.
Since most doctors knew very little about her disease, she was forced to an out of state specialist for her treatment. In the whole United States, there were only two doctors who specialized in Fanconi Anemia and could give her the help she needed. One was in Memphis, TN at St. Jude and the other was in Minnesota. Jenny and the family traveled to Minnesota to meet with the doctor who specialized in her case. A doctor who knew a great deal about Fanconi Anemia was a wish come true.
The first procedure they tried was having my aunt get pregnant so they could use the baby’s stem cells from its umbilical cord to cure her. My aunt was not capable of having kids anymore; therefore, they had to artificially inseminate her other daughter’s egg, along with my uncle’s sperms, into my aunt. Every time they went through this and the baby’s stem cells did not match they had to terminate. My aunt, Jo Ann, went through this procedure five different times. One of the times she was pregnant with quadruplets, but none of them matched. The last time they tried, the baby finally matched and everyone was so happy, but Jo Ann ended up having a miscarriage. Money was becoming a very big issue and they could not afford to keep doing this emotionally or financially. Can you imagine how devastating that must be? To be so close to saving your own daughter and being denied happiness again?
After they had lost all hope on that course of action, everyone was hoping for a miracle. Jenny was getting very sick and needed some type of cure soon. They never found a perfect match for a bone marrow donor, but they did find someone who was as close as they were going to get. They set the time and date for the bone marrow transplant for the very next day. Finally, more hope at last.
I remember flying in and going to see how Jenny was. The hospital was so white and huge. It was crowded, noisy, smelly, and full of hurt and sadness. How would anyone be happy spending their last days in that environment? Jenny was already in surgery when we got there. It all happened so quickly. We received the phone call the night before and the next night we were there. No one had any idea what to expect. The next day everyone got to see her and find out how she was. She seemed well, even great for someone who had surgery just hours before. I only got to see her for a minute, but I still could never forget it. I was so relieved that she was okay. I could not bear to loose not only my cousin, but a great friend.
The whole day everyone kept their hopes up that everything would work out successfully. We had to wait and see if her body would accept the new bone marrow and it seemed as if it was going fantastically. That night it went bad. She hit rock bottom. Jenny all of the sudden became dreadfully sick. I was back at the hotel. I remember hearing the phone ring. Immediately, we knew something was wrong. My grandma called and said it did not look good. We kept on praying. Then, the phone call came. That one phone call I would never wish upon anyone. Jenny was dead and it drastically changed everyone’s life at in an instant. Together my mom and I cried. It could have been for minutes, maybe even hours. I had no idea what to do, or how to react. All I knew was it had to be a lie. It had to be a joke, an awfully mean joke, but it was not. All hope was gone forever. Jenny, my cousin, my friend was gone forever.
The next week was Jenny’s funeral. My mom, my sister, and I flew to Kentucky, where Jenny lived, and my dad drove from Arkansas to meet us there. Once we got there we went to stay with my grandma and the mood around us was indescribable. It was silent and sad. I was only thirteen and did not know if I did not know how to accept that she was gone for the better and that God wanted her to live a better life there in heaven. Should I be angry with him? When someone so young, so close, and so wonderful is taken away from you, it is hard to know how to react.
The day before the visitation, we went to my great grandma’s house to see everyone and see how everyone was doing. We ate dinner and the whole time everyone looked so depressed. The family talked about how Calvin and Jo Ann, Jenny’s parents, were doing and it seemed like they were definitely not good. Jo Ann could hardly speak to anyone and Calvin would not speak at all. They both were in a major depression and the next day, when I saw them at the visitation, I immediately began to cry. Calvin hugged me. He knew how close Jenny and I were and we were almost the same age. I was surprised he even came up to me. I believe it was the saddest time of my life.
Before the funeral the next day, they played a slideshow of Jenny and there was not one dry eye in the funeral home. This big vintage, distasteful funeral home was already sad looking enough. The tears and closed casket did not help matters. The people were all so sad and I knew exactly where they were coming from; I was sad too.
As everyone drove to the grave yard that stormy sad day, I could not think of anything else except what had happened. Jenny was such an amazing young girl. She was nice to everyone and she did not ask for much. All she wished for was to be a normal child. Everyone gathered in the cemetery to watch her casket be carried to the gravesite. All the people there came around and put a flower on the casket. As tears ran down everyone’s faces, the preacher said a prayer and a few nice things about Jenny. We all watched as the casket was lowered into the ground. At that time, I knew Jenny was watching down from heaven and that she was in a better place.
The loss of my cousin, Jenny, hurt her friends, family, and even people who barely knew her. She was the girl who would have made a great impact on the world. Still now, I think of Jenny every single day and I wish there could have been a way for me to make a difference, to save her, or at least say goodbye. Why do bad things have to happen to good people?
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