Sharing Jamie’s World
By Joe C. Thompson
Smashwords ebook published by Fideli Publishing Inc.
© Copyright 2011, Joe C. Thompson
No part of this eBook may be reproduced or shared by any electronic or mechanical means, including but not limited to printing, file sharing, and email, without prior written permission from Fideli Publishing.
Smashwords Edition, License Notes
This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each person you share it with. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then you should return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.
ISBN: 978-1-60414-371-3
Contents
About the Author
Joe C. Thompson was born in Indiana and grew up there. After he finished high school, where he played sports, he took several sales seminars and a Dale Carnegie course. He worked in factories after school and has now been as insurance salesman for forty-five years. He was been active in community affairs, is a member of the Optimists Club and has worked with the Girls’ Softball League and Mooresville Men's Tennis League. On several occasions, he has spoken on salesmanship and cystic fibrosis. He has raised money for the local Cystic Fibrosis Chapter and for the national foundation. He is an active member of the church of Christ. Sharing Jamie’s World is his first published book, the true story of his third son’s courageous fight to survive cystic fibrosis.
Mr. Thompson still lives in Indiana with Wanda, his wife of forty-seven years. They have a son, Joe Jr.
Sharing Jamie’s World is the valiant story of the fifteen-year life of a cystic fibrosis victim, Jamie Thompson, told by his father. It is also the story of how his illness and his fight against it drew his whole family together in their ardent desire to help him in his courageous battle against this affliction. The remarkable patience of his parents and brother is fortified by their enduring faith in God and close friends.
One admirable aspect of the story of the Thompsons is their completely unselfish attitude toward other cystic fibrosis victims. Jamie’s father not only tried to cheer them up but, on occasion, brought them home with him and sometimes served as a much-needed taxi for them when their families were unable to drive them.
Jamie himself was an outgoing boy with an extraordinary knack for making friends and keeping them. He tried to participate in school activities and sports as often as the increasingly debilitating disease would allow him to.
In his introduction to a book that must have saddened him as he writes, Mr. Thompson gives his reasons for writing this account of Jamie’s life and death.
“A communication must be formed and developed between physicians, parents, the cystic fibrosis child and God, this being done to help the child fight this malignant-type illness.
“This writing will let you know how our son and brother, Jamie, fought, how he taught many other patients, helped and encouraged them, with his bright outlook on life, how the life of a cystic fibrosis child, as well as the family and those involved in the fight to eliminate or control this dreaded disease, must be. We know that without God and our faith, our lives would have lost meaning and purpose.
“I love Jamie today, as much as when he were still here, and my wife and son Joe feel likewise. In my mind the knowledge that Jamie is gone from this earth is not unbearable, but there is an empty feeling that can never be replaced.”
Everyone who has or knows a child (or adult) with a fatal disease should read this amazing account of Jamie’s life; it will serve as an inspiration to all those who follow Jamie’s struggle during his brief lifetime to enjoy what little he could, with the help given him by his family and his numerous friends.
Dedication
This book is dedicated to Jamie’s older brother, Joe Thompson, Jr.
Introduction
I wish this book to be a memorial in Christian love to our son and brother, Jamie Lee Thompson, a cystic fibrosis child.
Jamie was born September 3, 1963, and was taken by God to paradise to await his place in Heaven on January 10, 1979 after a lifetime fight of over fifteen years.
I also wish to thank the many cystic fibrosis children, their parents, doctors, researchers, nurses, aides, respiratory therapists, friends and all who were involved in the care and love of our son Jamie and in our goal to conquer cystic fibrosis.
Cystic fibrosis is a fatal illness, a generalized disorder affecting the excorine glands within the lungs and digestive system. In patients these glands secrete to outer surfaces, not inward to the bloodstream or lymph area which is normal, causing the mucus, saliva and sweat produced by the excorine glands to have a chemical and physical abnormality. The cause is unknown.
Sweat of cystic fibrosis patients has an exceptionally high salt content, and this is the basis for reliable diagnosis. Cystic fibrosis patients have unusually thick and sticky mucus in their lungs and digestive system. The plugging of the ducts of the pancreas by mucus is a problem. Respiratory, heart, and other parts of the body are affected as the patient becomes older.
Cystic fibrosis is passed on in families by genes, the units of heredity in the cells. Research is striving to find a solution to this problem and may soon have a valid test to show if a person is a potential carrier of this gene.
There is no known cure for cystic fibrosis and it has conquered the lives of many children and young adults. When it is detected in early infancy, doctors, with the help of the research field, try to find the best medical and dietary needs for the cystic child. At this time a communication must be formed and developed between physicians, parents, the cystic child, this being done to help the child fight this malignant-type illness.
This writing will let you know how our son and brother, Jamie, fought, how he taught many other cystics, helped and encouraged them with his bright outlook on life, how the life of a cystic child, as well as the family and those involved in the fight to eliminate or control this dread disease, must be. We know that without God and our belief and faith, our lies would have lost meaning and purpose.
There are various degrees of cystic fibrosis, and I hope these words can help all who are involved. I know that without faith in God we cannot cope with the everyday problems that arise within a cystic fibrosis family. I pray these words will help fill the void which has been left in our lives, and that those who read these words will cherish this life for all it is worth, and more, and let God into their live, heart, body and soul.
He is Daddy’s Man and Mom’s Little Angel and Joe’s brother. I love you, Jamie. I pray this will be of comfort to my wife, my son, Joe, and me. I want Jamie to somehow still help others and us in our allotted time on God’s earth. I want to impress upon you the impact that my Little Man had on our lives and on whomever we met.
You see, Jamie was happiness and love — a smile — then — now — and forever.
Chapter 1
I can remember taking Wanda to the hospital early on September 3, 1963. She gave birth to a baby boy, our third son, whom we named Jamie Lee Thompson. We already had Joe, born August 21, 1958. We also had another son, Brian, born January 11, 1961, who passed away November 26, 1961.
Jamie was a beautiful baby, and he weighed 7 lbs., 15 oz. After a few days, we brought him home; everything seemed to be all right. Wanda wanted to breast-feed Jamie, and she did for the first few weeks. Jamie gained weight in the beginning. Then, when he was about two months old, he began wheezing and coughing. He would vomit his milk, and it would be mixed with thick mucus. Jamie started losing weight and coughing more violently. We took him to Dr. Rogers, his pediatrician, who stated that perhaps Wanda was too nervous to breast-feed. We went from one formula to another trying to find one Jamie could tolerate, but Jamie still continued losing weight and dehydrating. The next step Dr. Rogers suggested was the hospital. Wanda and I were young and scared. It had just been a little over a year since Brian died, and we wanted and needed Jamie to be o.k. As we carried him down the familiar hall to the children’s ward, Wanda was crying.
I was working, learning the insurance business, and Wanda stayed at the hospital with Jamie. All kinds of tests were run, but every one came back negative. Jamie became weaker and began running a fever. I believe it was after about ten days, when Wanda and I went to the hospital to see Jamie. We could only see him through a window on the closed door. The nurse brought him to the window so that we could see him better. Looking at Jamie, I noticed that he looked blue and his eyes were rolling back. I knocked on the door, and the nurse said Jamie was just tired because tests had been run all day. I stood there helpless and could see Jamie’s eyes still rolling backwards and not looking normal. I knocked, opened the door and ran toward my son. A doctor tried to remove me from the room, but I told him that my son was not looking right. We ran over to Jamie; Jamie was dying! Wanda and I stood in the hall asking God to please let our little son live.
Several doctors and nurses worked with Jamie for over an hour. We were told nothing; we didn’t know what was happening. Then we saw Dr. Rogers, who had been called to implant an I.V. in Jamie’s head for intravenous feeding. Dr. Rogers told us that Jamie’s lung had collapsed. The next day, a heart and lung specialist was called and he told Wanda that Jamie had an incurable lung disease and would not live. I came off the elevator that evening to see how he was, and I heard my wife crying hysterically, saying, “Oh, why? Why?”
I grabbed her and asked, “What is it?”
“Jamie is going to die; he has an incurable disease.” I tried to calm her, and we went down to the baby ward to see our son. Looking at him, we prayed, “Oh, God, please let us bring him home.”
Later that evening Dr. Rogers met with us and told us Jamie had cystic fibrosis, and tried to explain the disease to us. He told us cystic fibrosis affects the lungs. He said Jamie’s left lung had collapsed and that they went into the lung with a scope to try to blow it back up. When they tried, Jamie was too weak to stand the scope. We were told that Jamie might never come home again.
After forty-six days, though, with God’s help and help from Dr. Rogers and the hospital staff we brought our son, Jamie, home. He was fat, happy and five and one-half months old.
Dr. Rogers kept us updated about cystic fibrosis, and we met other cystic fibrosis children and their parents. We met Miles, who was thirteen years old, and he showed us all the pills he took. His father told us about all the equipment we needed and taught us how to use it. We joined the Indiana Chapter of the Cystic Fibrosis Foundation and tried to keep ourselves updated on any new medical achievements that might help Jamie.
Chapter 2
We now had to learn what cystic fibrosis was. We had to purchase medical equipment recommended by our doctor and the Cystic Fibrosis Foundation. Jamie had to sleep in a mist tent, similar to an oxygen tent, into which a wet, medicated fog was blown so that he would breathe it into his lungs. The mucus in Jamie’s lungs was abnormally thick and sticky, and this mist helped loosen it. Every morning Jamie would awake coughing violently, and his clothes would be soaked from the moisture within the tent. The tent had to be cleaned daily to kill any form of bacteria that might grow inside it. The ultrasonic machine, which produced the mist, also had to be cleaned daily. We had to purchase several different medical devices to make the mist tent work. Within the first year, we had three or four new types of medical equipment to help us take care of our son. Our insurance ran out, and the cost for the equipment and medication Jamie needed ran into the thousands of dollars.
Jamie had to have aerosol treatments three to four times a day. These treatments were given with Jamie wearing a facemask and breathing a medicated mist into his lungs. After each treatment, Jamie had to have physical therapy. This was done on a special table that could be set at different levels so his body could be positioned to help his lungs drain properly. The therapy was given by beating on his small chest and back to loosen the thick, sticky mucus. There were twelve different positions that had to be beaten and drained. This was very hard on Jamie, but it was something that had to be done so that he could breathe.
We had our ups and downs those first few years trying to learn how to do all of his treatments and to accept his illness, but we were a happy family. We were very close and under God’s watchful eye. We went about our lives hoping and praying things would be all right, living one day at a time.
We took care of Jamie and Little Joe, and lived as normally as we could. You see, Dr. Rogers had told us Jamie might not live to be two. He estimated that at most he would live to be five years old. He told us to avoid taking him out into the cold weather and to stay away from crowds; Jamie was susceptible to infection and colds that might become pneumonia.
With Jamie sleeping in his mist tent every night and with his treatments and medication, he continued doing pretty well. Someone told us about a doctor in Muncie, Indiana, who had two cystic fibrosis children of his own and knew quite a bit about the disease. We took Jamie to see this doctor. He ran all types of tests and blood work and said he would let us know the results. He said that Jamie had pneumonia; this disease, cystic fibrosis, had hit again. We called Dr. Rogers and he said to bring Jamie in. He told us that he didn’t blame us for searching for other ways to help Jamie. He said if there was a doctor anywhere in the world who could help, he would send Jamie to him. He said we needed a doctor we could trust and who could help us as well as Jamie. After more extensive treatment, Jamie was once again well.
During one of our visits with Dr. Rogers, we mentioned that Jamie tasted salty when we kissed him. He said that if we had told him this in the beginning, Jamie could have been diagnosed right away because the high salt level was one of the most important factors in diagnosing cystic fibrosis.
At the age of four, Jamie was chosen as the poster child for the Indiana State Chapter of Cystic Fibrosis. They said that they chose Jamie because he had such a beautiful, happy smile. Jamie carried this smile throughout all his life. He had his picture taken with senators and doctors to help raise money for cystic fibrosis.
* * * * *
Just before Jamie turned five, Dr. Rogers told us they were opening the cystic fibrosis clinic at Methodist Hospital Children’s Pavilion. Dr. Gabriel Rosenberg was going to be the staff physician specializing in cystic fibrosis. He suggested that we take Jamie to the clinic and have Dr. Rosenberg take care of him. This was a big decision for us, because Dr. Rogers was a well-trained physician, and we put our trust in him. Dr. Rosenberg not only became Jamie’s doctor, but he also became his friend and ours. He, along with his staff, became part of our family.
Jamie had his fifth birthday. How happy we were! He had beaten the odds! He had a Big Wheel and he and his friends would scream down the sidewalk racing. He was full of life, energy — well again.
Later, Jamie began to slow down. He was feeling tired, not eating well and coughing more and more. Dr. Rosenberg said that Jamie would have to be admitted to the hospital. He said his lungs were all clogged and he had pneumonia again. Jamie needed oxygen and was given stronger medication and shots. He was getting eight shots a day. He was getting so many shots that they had to give them to him right above his knee. He learned to give them to himself. He would sit on the side on the bed, insert the needle above his knee and never shed a tear — he was so brave. After a while, his lungs cleared and Jamie was well and home again.
Jamie was a special guest at Disneyland in California. He rode all the rides, saw all the characters, and had his picture taken with them. They went to Knotts Berry Farm, San Diego Zoo, and Marineland. Jamie went horseback riding, panned for gold, swam in the ocean, went surfing, built sand castles, combed the beach; did all the things a boy could do. What a glorious time we had.
When we came home, we took Jamie in for a routine check-up. Dr. Rosenberg said, “You look great! You have gained two pounds and have a good suntan. Jamie, maybe you should have stayed in California.” How happy we were!
Chapter 3
Just before Jamie was to enter first grade in September 1969 he became very ill, again running fever, coughing and losing weight. He had to be admitted to the hospital. This disease again had hit his lungs, his breathing — needles in ankles, arms, legs — oh, so many shots.
After a few days, Jamie was ready to tear the place down. We were so happy. The medication was working and at this time we never really doubted Jamie would get well. Again, Jamie improved, but he had his moments of coughing, choking, gagging, gasping, for the breath of life.
Mr. Fisher, the activity director, had the recreation room at night and had various things to occupy a child’s mind. They watched movies, made crafts, and played games.
When Jamie was younger, we always had a private room and stayed nights with him, but as he grew older, Dr. Rosenberg suggested that Jamie have a roommate and become independent, so we would stay until nine or ten o’clock. Jamie, looking out his window, waved, so brave — or was he? Did he do this for us? The hospital is a difficult place, especially for someone who was cared for so closely and who wanted to do so much and could do so little. Also, the mucus might cause him to choke or have a bad coughing spell.
After coming home from the hospital, Jamie started first grade but missed a lot because of his illness. We talked with his teacher and decided to let him go to school if he felt like it and do some work but not to push him. He would go ahead and stay in first grade this year and start first grade over again next year. This way he would be with his friends. Not letting him go into second grade bothered him later on for when he was asked what grade he was in he would say, “I’m in third but should be in fourth. I was held back because of my disease.”
I met with Jamie’s principal and teacher to explain to them Jamie’s illness. I wanted them to try and understand that Jamie was special, being a cystic fibrosis child.
“Yes, I know, there are many other illnesses and afflictions but you now have a cystic child as a student. He is special but treat him like any other student and watch him; if there is increased coughing or slowing down, let us know.”
Jamie made over fifty trips to the hospital the next four years, but with Dr. Rosenberg’s medical advice and God’s help, we kept Jamie home, out of the hospital.
Then, in 1972 Jamie was sick and in and out of the hospital. His lungs had become clogged, — fever, infection and more needles.
During these years, Joe grew up but always played with Jamie. Taking bubble baths was a favorite, throwing water on each other. One day they were riding their bikes together and wrecked them. What a mess! Cuts, broken spokes, twisted wheels, but they were not hurt badly and they got up mad at each other, but also laughing, two happy brothers.
In 1973, Jamie again had to be hospitalized. While there, he met two cystic fibrosis patients. Steve was doing quite well. Jimmie was having quite a bit of trouble. Jimmie had a birthday and the hospital gave him a party. Jamie said, “Jimmie is so little and cute, dad.”
One day when Dr. Rosenberg was in checking Jamie, Jamie said, “I’m going to get a swimming pool!”
Dr. Rosenberg said, “Great that will be good exercise for you.”
Jamie was better and came home. He was a free spirit, our shining star, our happy-go-lucky Jamie again.
Jamie got his swimming pool and his friends would come over for swimming parties. They would stay overnight and have pillow fights.
Jamie loved to hunt for crawdads. He and his friend David, Kirk and Greg would catch them and sell them to the bait and tackle shop for one cent each. One day Greg and Jamie caught six hundred, wow! Was he happy! Six whole dollars!
Jamie began having more difficulty breathing. This was all part of this progressive lung disease, cystic fibrosis. Jamie again had to be hospitalized in April 1974. Soon Jamie was a tiger on the third floor, running all over the place. He would hide from the nurses, Dr. Rosenberg, the therapy people — anything for fun and to take his mind away from C.F.
One day Dr. Rosenberg asked Jamie if he would like to go to a basketball game.
“Can dad go too?”
“Yes.”
So plans were made to go. How happy this made Jamie! Jamie running around in the hall and saw Jimmie’s mother. He asked, “Where’s Jimmie?”
She simply said, “Jimmie is dead.”
Jamie ran back into the room crying and said, “Mom, I can’t go to the game tonight, Jimmie died! Why didn’t you tell me?
“Oh, precious, I didn’t know Jimmie died.”
Holding Jamie in her arms Mom tried to comfort him and make him feel safe.
This was a complete shock and hurt to Jamie. He was so upset; Dr. Rosenberg came in to try to explain death to our small son. He told him how sick Jimmie was and that Jimmie was ready to die. We would all die someday and that it wasn’t how long we lived but how we lived that was important. Life goes on.
During these years, Jamie acquired special buddies, whose love helped Jamie enjoy this time in his life. Donald, one of his best friends, would always stop by the house and walk to school with Jamie.
As Jamie was growing up, he wanted to play baseball. He was so tiny and cute. It seemed every time he would get on base, he would score. He would get walked to first by the opposing pitcher and would run laughing all the way — sliding into home plate. He was all boy — except for that hacking cough.
The summer just before Jamie turned eleven he said, “Dad, it is kind of hard to run the bases.”
He talked about playing and Jamie decided to quit, and I don’t blame him.
I played tennis once in a while, and an older man, Bob, often came to the courts and hit some with me. He had met Jamie before, but never became acquainted with him as he did in 1974. Jamie’s smile, and that warm, lovable feeling had gotten to Bob.
Jamie learned to play tennis. He played with Bob, Joe and me. I worked, but stayed near home. When I came home, off we’d go fishing, bike riding, or watch a ball game, living with happiness and love growing between us. Mom was over-protective like most moms. We had arguments about running in the rain when warm enough or staying out a little later standing on the corner or chewing the fat with the guys or playing slips. Then the snow came. Wow! Jamie loved it. Once we made a great big snow fort and Bob came over and took Jamie’s picture inside it and put it in the newspaper. We would have snowball fights and go sledding. What fun we had! Life was good.