Kai's Story 

© Copyright 2000 by Kathy Thrash

Most of us take for granted the fresh air we draw into our lungs every second, every day. We never even give it a second thought. For over 18 years, Kai Thrash dreamed of taking effortless breaths, instead of being pounded on the back to rid his tired lungs of an over-abundance of mucous caused by cystic fibrosis. Through it all, Kai kept active as a soccer and tennis athlete, competing in state and national tournaments with his high school and community college teams.

Each day was a struggle for Kai. Finally, in September 1997, the call came to Kai's house -- a pair of healthy lungs awaited him at Ochsner Foundation Hospital in New Orleans. The new lungs served Kai for a year and a half before rejection set in. Almost exactly two years after his first transplant, Kai underwent another successful transplant. He never rejected the new lungs.

Kai, always the athlete and forever the optimist, went into his second transplant with a determination to live, if not for him, then for his family, especially for his mother, Kathy. Small for his age --a physical trait common to cystic fibrosis sufferers-- Kai's spirit loomed larger than the broadest of men. He took that spirit to his church, to the soccer field, to the tennis court, to his friends and family.

After tackling recovery from several illnesses this past summer, Kai was finally admitted to Ochsner in late August for a lung infection. He came home for a couple of days in mid-September, but was re-admitted to Ochsner, where he died on Sept. 21, 2000, from complications of two lung infections. His mother, father, siblings and other close relatives were present at his death. According to one of his aunts, Lynn Killibrew, Kai's death was beautiful and peaceful. No struggle to breathe, no sudden gasping. Just a peaceful journey.

You may think Kai's life astonishing, even miraculous. But Kai's family and friends spent over 21 years focusing not on the risks or the bumps in the road, but on getting him up and at 'em again.

Here, you'll read the compelling and, quite frankly, miraculous story of this young man who for many years literally fought for every breath he took. His mother tells the story in a way that only a mother can tell it -- from the heart, from the soul, from the spirit.

I've often wanted to write about my son Kai, who suffered from cystic fibrosis for over 18 years. After seeing Celine Dion on The Oprah Winfrey Show in November, 1999, talking about her niece, who succumbed to cystic fibrosis, I felt God move me to tell Kai's life story.

I truly believe God places us at certain places, at certain times in our lives. About 25 years ago, I met a young girl who was a neighbor's relative. She had a terrible cough and was barrel chested; I knew something was terribly wrong. She walked up to me one day and started talking to me. She said she had an incurable disease called cystic fibrosis. My heart went out to her and her family.

A few years later, God blessed me with one of my greatest gifts. On February 17, 1979, my first son, Kai (pronounced Ky), was born. Shortly after his birth, he started having respiratory problems and had poor weight gain. I spoke to his pediatrician and expressed my concerns to him.

I started reading the baby-care book by Dr. Spock and learned that Kai's symptoms were similar to that of cystic fibrosis. At 3 1/2 months of age, Kai's doctor scheduled him for some tests. I asked his doctor if he was doing a sweat test on Kai; he said yes. He then asked me how I knew of this test. I knew then that God meant for me to encounter that young girl with cystic fibrosis just a few years earlier. Kai's test results came back, indicating he had the deadly, chronic disease.

Soon after, Kai's natural father and I moved to Jackson, Miss. Eventually, his father walked out on us. I moved back to my home in Gulfport, Miss., and lived with my parents. I became overly obsessive with Kai, fearing he would catch something from someone. I didn't want to take any chances. In June 1980, my parents realized I needed to move out and be on my own with Kai.

God's next blessing to Kai and me was when Bary Thrash entered our lives. I knew him from years back. He had dated my sister when they were in high school. I was four years younger and in junior high school. We fell in love with each other. More importantly, he loved Kai. We married in December 1980. In January 1981, Kai's biological father agreed to let Bary adopt Kai.

Bary and his family accepted Kai from the very beginning and have not once shown partiality. Kai has two brothers, Tanner and Taylor, and a sister, Kaycee.

Bary taught me early on that we needed to treat Kai as normally as possible. I began to let go of my fears. We enrolled Kai in preschool, and he did just fine. When Kai was in kindergarten, he had to be hospitalized for the first time since infancy. He had pneumonia. I can remember that as the nurse started his IV, he looked up at me and saw me crying. He said, "Mom, why are you crying? I'm the one getting stuck."

God gifted Kai with great athletic ability, so at 5 years old, Kai began playing soccer. His disease didn't stand in the way. In fact, his cystic fibrosis specialist, Dr. Scott Davis, at Tulane Hospital in New Orleans, Louisiana, worked with our Mississippi Coast pediatrician, Dr. Bryant McCrary, in devising an atypical protocol with Kai's hospitalizations. When his pneumonia wasn't severe, he was allowed to stay in Gulfport Memorial Hospital. The nurse would wrap up his IV, and he would leave the hospital on a pass to play soccer and to attend school. As long as he returned to receive his antibiotics, the doctors were very accommodating.

Kai became a standout soccer player. His team, The Fireballs, won two state championships, and he scored the two winning goals at the tournament in May 1990. Relatives in California called to tell Kai congratulations. They had read about Kai's achievement in USA Today.

As Kai's disease progressed, he could no longer endure soccer. Kai conceded and started playing tennis. He made the high-school tennis team as a sixth grader. He played singles as long as he could endure it. He began playing doubles with his brother Tanner. They made it to the state finals twice. As a senior in May 1997, Kai's lung capacity was only 23 percent of normal functioning...and he was still on the tennis court.

In 1996, Kai's doctors said we needed to begin thinking about a lung transplant. We asked his doctor that if Kai were his child, where would he go. The answer: St. Louis Children's Hospital, a long-time provider of lung transplants. Dr. Davis also told us that Ochsner Foundation Hospital in New Orleans, Louisiana, had begun performing transplants, too. We went to St. Louis in November 1996, and Kai was put on the hospital's waiting list.

By this time, we had used about one-third of Kai's lifetime maximum insurance. We knew we needed to begin fund-raising efforts. A group of friends and colleagues on the Mississippi Coast set up a non-profit organization called Friends for Kai Thrash.

Through it all, the main thing Kai hoped for was to graduate in May 1997 and then be transplanted. His wish came true -- he graduated with honors, even though he had spent days, weeks and months of his life in the hospital. At the graduation awards ceremony, Kai received The Extraordinary Effort to Achieve Award.

Prior to Kai's graduation, his father was diagnosed with prostate cancer. Bary underwent surgery to remove the prostate in early May 1997. So far, Bary remains cancer free. The month of May was also special to me because I witnessed the baptisms of Bary, Kai, Tanner and Kaycee. What an awesome feeling to watch them commit themselves to Christ.

Shortly after graduation, Kai's health continued to decline, and he asked that we make an appointment at Ocshner. Kai didn't feel he would make it to transplant in St. Louis; he remained fourth on the hospital's list. I called Dr. Davis at Tulane University Hospital and asked him to set up a screening with Dr. Vincent Valentine at Oschner. We went in July, and Kai was listed with them in August l997.

Kai became extremely ill in September and was admitted to Ocshner on September 12. He got the call on the night of September 16, while he was in the hospital. He had been on the phone with his then-girlfriend, Stephanie Hunt, when a nurse told him to clear the line. The transplant coordinator, Kathy Nelson, was trying to get through to him.

I had gone to my room at the Brenthouse Hotel, which is built in with the hospital. I had been praying and I called home to talk to Bary and the kids. I told him about my prayer, and he said, "Kathy, I just prayed the same thing." Shortly afterwards, Kai called my room and said, "Mom, it's time," and I asked him, "Time for what?" "Mom, I'm going to get my transplant tonight, so hurry up and get dressed and come over," he said.

Bary and I had a plan for him and the rest of the children. We live in Perkinston, Mississippi (about a two-hour drive to Ocshner). I called him and told him that it was time for the transplant and to hurry up because they planned to start the operation at 2 a.m. I told him I had to go to Kai's room, and I would see him shortly. Bary said, "Kathy, don't you hang up on me. I forgot what I"m supposed to do." We both calmed down and put the plan into action.

When I made it to the floor, I saw Dr. Valentine and he reminded me that Kai had a three-out-of-four chance of survival. He also told me that the donor was larger than Kai but he had consulted other transplant centers and they all agreed that it was a go, and if the lungs were too large they could be trimmed.

Family and friends started arriving, and Bary and I were told that we could stay with him once he was in the holding room. We decided that we would let everyone else spend time with him.

They came to get him, and everyone said goodbye with smiles and tears. When we got to the double doors entering the surgery center, they told us we were not allowed to go back. We thought we would have our special time with him, but I feel that God knew that we would speak to Kai from our heart, if only just for those few seconds. We gave him our love and told him that he would be safe in God's hands and not to be afraid. They closed the door, and Bary and I embraced each other with love, comfort and tears.

As of 8 a.m., we had not heard anything, and we began to get impatient. Within a few minutes, the transplant coordinators, Kathy Walker and Kathy Nelson, came in and told us they were sewing him up and that the surgeon, Dr. McFadden, would be here shortly to speak with us. When he came in, I saw a smile on his face, and I knew that everything was okay. He said that the lungs fit perfectly, and he did not have to trim them. This was another true gift from God.

They let Bary and I go back to see him. There were tubes and monitors everywhere, and at first I thought I was going to faint. As we stood there looking at Kai, I became scared and told Bary to get the doctor because Kai was barely breathing. I was accustomed to Kai's respiratory rate being in the 20s and 30s, and as I counted them, they had gone down to 14. For the first time in Kai's life, there was no struggle to breathe.

During the hours of the transplant and the hours after, we were on an emotional roller coaster. When we went to our room at the Brenthouse, and as I prayed to thank God for this miracle, I began to fall apart. I began to cry because I then focused on the donor and his or her family. Not knowing if the donor was a mother or father, son or daughter, brother or sister, husband or wife, or someone's best friend, I asked God to embrace them with His loving arms, to comfort them, to give them strength, to give them grace and to renew their faith in Him. It was very difficult for us to know that in order for our son to live, someone had to die. The only way we worked through this was to know that God had already determined that person's fate.

On the second night after his transplant, Kai was sitting up, eating a Wendy's hamburger, popcorn and a Frosty while still in intensive care. We were told to expect some type of acute rejection, and we sat on pins and needles for days. There was no rejection.

Kai had always been an avid Florida Gator fan, and the Gators were playing at Louisiana State University in Baton Rouge. Dr. Valentine, Kai's pulmonologist, gave Kai three tickets and allowed him to attend the game only three weeks after his transplant. LSU beat the Gators, and Kai had to face the music at his next clinic and physical therapy appointment -- they had decorated everything in purple and gold. Kai also had to wear a purple-and-gold headband. He took it in stride with that wonderful smile of his.

My first cousin Ricky Randall and his wife, Sharon, also had a son with cystic fibrosis. The disease not only affects the lungs, but also the digestive system. Ryan had problems with both, so he needed liver and lung transplants.

Ryan was put on the transplant list at Barnes Jewish Hospital in St. Louis, Missouri, in February of 1997. It was one of the only transplant centers that would transplant two organs. Kai got to see Ryan on the way back to New Orleans from a weekend pass in November 1997. Ryan was also home on a holiday pass. Ryan's diseased progressed, and he succumbed to cystic fibrosis on February 14, 1998, while in St. Louis.

I flew to St. Louis in January 1998 and spent some time with them. It was very hard to see Ryan suffer, and after all of these years, he and Kai would now take their separate paths.

Ricky, Sharon, Bary and I have shared tears of joy and tears of sorrow during the past 20 years. Sharon was, and still is, always there for me when I need her. She is one of the most God-loving and faithful Christian women I have had the privilege of knowing. She felt all along that Kai would make it to transplant and that Ryan might not and that God would heal Ryan. Ryan did receive God's ultimate healing by taking Ryan home with Him.

Kai attended Ryan's funeral and afterwards shared with me that as he watched them, he was imagining that he saw himself and his family in their place. Kai also said that God's picture of life is perfect and that Heaven must be an awesome place and if God takes him today, he's ready.

In January 1998, Kai enrolled at Mississippi Gulf Coast Community College's Perkinston Campus, where we live in campus housing. Bary is an instructor at Perk. I was the bookstore manager at Perk when Kai enrolled at the campus.

In August 1998, the college started its first college soccer program for men and women. My husband was selected to coach both teams. For the first time in five years, Kai was able to return to the field and play the game that he loved. They had a successful season and were runners up for the state championship. It was an awesome feeling for everyone to see Kai back on the soccer field. For me, to see Kai and his father on the soccer field was truly a Kodak moment!

During spring 1999, Kai also returned to the court to play on the college's tennis team. It was during this time that Kai began rejecting his new lungs. Although Kai's pulmonary- function test indicated rejection in March, Kai didn't feel any symptoms until May. The doctors hospitalized him and gave him massive doses of anti-rejection drugs and steroids. He made it to the state finals, but the degradation of his lung capacity allowed him to play only one match.

We knew that lung re-transplants were very rarely done. Oschner had only done two, and both of them died. After a series of tests and careful thought and consideration by Dr. Valentine and Dr. McFadden, they agreed to a re-transplant for Kai. They told us Kai had to make the ultimate decision.

Kai wasn't sure if he wanted to be re-transplanted. He told us God had been good to him, He had given him a wonderful life, and that for one and a half years, He had allowed him to breathe easily and remain cough free. We told Kai we would support his decision and not to base it on his family and friends. He had to want it and fight for it. Otherwise, he wouldn't make it.

After Kai decided to go through it once again, his father promised to buy Kai a new car. We had never owned a new car!

The doctors changed Kai's anti-rejection drugs, and he started experiencing nausea, vomiting and weight loss. They thought it was side effects from the new drugs. After the sixth day, I called the hospital and told them that Bary was on his way with Kai and to please be at the emergency room. I was unable to go because in March 1998, I fell and ruptured my lower lumbar, for which I have had several surgeries.

On the way to New Orleans, Kai told his dad he felt like he was going to faint. Once he arrived, they immediately discovered that Kai had developed diabetes from the new drugs. His sugar level was almost 600. I knew then that God was not ready for him; He could have easily taken him then. After a few days in the Critical Care Unit, Kai's diabetes was controlled, and he was allowed to return home.

He was officially put back on the transplant list on June 4, 1999. His lung capacity continued to decline, and his weight fell to 89 pounds. He struggled so hard to breathe, and it only renewed the battle we had faced two years earlier. I continued to thank God every day for the blessings He had given us and asked Him to renew our faith and give us the courage, strength and grace to get through whatever His plan was for Kai. I continually prayed and told God that I knew He knew Kai's deepest thoughts and fears and to please comfort him.

When I prayed, I told God that I felt guilty because I focused the majority of my prayer time on Kai. I then realized that God could take Bary, one of our children, or me before he would take Kai.

I lost my only brother to cancer in 1991. It got to the point where he was suffering so, that we prayed and asked God if He wasn't going to heal, then please take him.

My mother died very unexpectedly in November 1992. At her funeral, the priest asked if there was anyone who wanted to share something about her, to speak freely. At the age of 13, Kai got up and spoke of his love for her and told of the numerous times she would bring his favorite foods to him when he was in the hospital. He ended by saying, "I look forward to the day when I will see her again." He touched many hearts that day. Many began to cry because they knew about his illness and saw the strong will and spirit he possessed.

The last three years have been exceptionally hard for our other children. With Kai's health, their father's diagnosis of cancer, Kai's transplant, my back surgeries, Kai's rejection and then Kai's second transplant, they have had to grow up much too quickly and endured more that most children their ages. I know that in a lot of ways they are much stronger. But at the same time, they have had many responsibilities placed on them. I pray they can begin to enjoy life and return to some type of normalcy.

In August 1999, Bary began a new school year, and the other children started school. Most of the time, it was only Kai and myself at home. Bary had soccer commitments for August, September and October. His team touched us in a very special way. Kai's soccer jersey, No. 23, was retired, and No. 23 was placed in the center of the soccer ball for the players' practice and travel uniforms.

Kai and I would call one another on the phone to check on each other. I had two back surgeries in June, and I couldn't care for him the way I had in the past. On four different occasions, Kai would lose his breath, and his dad and I would talk him through it by rubbing his back and telling him to breathe in your nose and out your mouth. It would take about five minutes before he could calm down and regain his breath. I can only imagine how he must have felt. His soccer buddies were there when he had one episode, and you could see the fear and concern on their faces. They visited him every day.

His relationship with his girlfriend became strained. The 1999-2000 school year was her senior year, and Kai felt he needed to pull away and let go because he wanted her to enjoy the year. It was also very hard on Stephanie. We told Kai he needed to discuss this with Stephanie and that she should be the one to decide. She visited him almost every day until school started. She was in the guard in band, so she didn't have the same amount of time to spend with him. We prayed they would stay together; we knew Kai loved her and needed her. They worked beyond their problems and things got much better with them.

Kai's kidney functions were not that good by this point. Our transplant coordinator, Denise Fuchs, called on September 23 and asked that we repeat his test. On Sunday, September 26, my husband and children went to church. I checked on Kai and told him that I was going to lie down and if he needed me, to call me. About 15 minutes later, I heard Kai call my name. I went to see what was wrong. He told me he wasn't dreaming or hallucinating -- he had a very strong feeling go through his body and said he knew he was about to receive a transplant.

On Monday morning, September 27, our transplant coordinator called and said that Kai's kidney functions were much better. That was what we wanted to hear. I told her about Kai's premonition. I asked her that if they got a donor, to please call the line in our bedroom so that Bary and I could prepare to tell Kai.

We went to bed about 11 o'clock that same night. Shortly after midnight, the phone rang. It was Denise, our transplant coordinator. She said they got the call for Kai and asked that we be there around 3 a.m. Bary went to Kai's bedroom. Kai was awake, and with a smile on his face, he said, "I got the call, didn't I?" I believe with all my heart that the feeling Kai felt on Sunday was God telling him, "Okay, Kai, believe in Me."

Kai called Stephanie while we made our other calls. Stephanie rode with Bary, Kai, Taylor and me. Ryan Bunch, a devoted friend to Kai, took Tanner and Kaycee. During the ride, Bary and I didn't talk much. We felt that Kai and Stephanie needed to talk to one another and that we would talk later.

We arrived at Ocshner around 3:30 a.m. They immediately sent Kai to a room in the Intensive Care Unit. The staff was very caring and accommodating, allowing several visitors at a time to see him. As he and Stephanie lay in the bed together, I saw Kai smile more in those few hours than I had in weeks. He would run his hands through her hair. They looked so calm and happy and confident that everything would be okay.

Dr. Valentine came to speak with us and told us that Kai got the call at the best time. His kidney functions had improved, and he saw Kai's wonderful spirit. He also told us he didn't think Kai would have made it through the end of the year without this transplant, which was more difficult than the first transplant.

The surgery lasted almost 10 hours. When Dr. McFadden walked in, he said, "This one was tough, but Kai is stable." He had a difficult time removing the left lung because of scar tissue from the first transplant. Kai was placed on a heart bypass at that time. The doctor said that the next 72 hours would be the most critical...and it was.

Kai's heart rate stayed around 145, his blood pressure was elevated and he was spiking a temperature. For three very long days we watched him; he was very restless. The only response we could get was a raise of an eyelid and him shaking his head no. We continually talked with him. He made me promise before the surgery that I would clean his face three times a day with alcohol (the anti-rejection drugs, after the first transplant, had affected his complexion) and to make sure they would give him something for pain. I did just that.

On Friday at noon, he was still unresponsive. We went downstairs to eat and rest for a while. When we returned two hours later, he looked at us and said, "Where have y'all been?" His heart rate was normal, his blood pressure was down and his fever gone. God had blessed us once again. He was very weak, and his recovery was slower. He spent one week in ICU and two weeks on the transplant floor.

While on the floor, I noticed a familiar name on the door next to Kai's room. His name was one that I recognized from Tulane Hospital. At the end of the hall, they had a waiting room where you can make free long-distance calls, watch television and the kids could play games. My sister, Lynn, went to the room, and the young man and his wife were there. They asked her which patient she was with, and she told them that her nephew, Kai Thrash, had just received a second lung transplant. The man told her he remembered Kai from Tulane. She asked him if he was going to get transplanted, and he replied that they could not re-transplant him. My heart went out to them, and in some strange way, I felt guilty because they gave Kai a second transplant.

Kai was discharged on October 19. When we went to the clinic on Monday, October 25, they told us the young man had passed away on Friday.

On November 15, Kai was released to move back home. His pulmonary-function test continued to climb, and his kidneys were doing better. He was given permission to start driving, and his dad did indeed buy him his car. I went with Kai to pick it up, and on the way home, he said he felt guilty and spoiled. I told him we didn't get him the car because he was spoiled. We bought him the car because of everything he had endured his whole life.

Kai returned to college in January 2000 and played his first match of the college tennis season on February 15. Kai said he wanted to enjoy life and live each day to the fullest. His spirit and courage were amazing, and he continued to touch the life of someone new each and every day.

Kai and his Gulf Coast tennis teammates went on to finish the 2000 season as co-champs in the state/regional tournament. In May, they competed in the national tennis tournament.

In his personal life, Kai and Stephanie had broken up after Christmas. Things had become so complicated that they decided they needed to break up for a while. Stephanie will always hold a special place in my heart for standing by Kai during the last three years of his precious life. Her family was also very supportive of Kai. Their love and kindness are endless.

Occasionally at night, I would hear Kai pray. He would pray for everyone else first and himself last. He was one of the most unselfish individuals I have ever known. I also believe one of the most unselfish acts a person can commit is to become an organ donor. What greater gift can we give someone before taking the hand of our Lord and Savior and entering the gates of Heaven? So many people don't want to be a donor because they fear the doctors might not do everything they can to save them. Others don't want to think about it because they don't want to think about death. But whether we like it or not, as each day passes, we're one day closer to death.

Speaking of unselfishness, the non-profit organization Friends for Kai Thrash continues to help our family, especially since the exhaustion of Kai's insurance. Mississippi Medicaid will only cover three years of anti-rejection medications and 10 prescriptions each month. Kai took approximately 40 pills a day. My gratitude to Friends for Kai Thrash will be eternal; the organization's tireless volunteers helped make a tough situation a lot more bearable.

Kai was chosen as The Person of the Week for our local ABC affiliate station, WLOX, in January 1998. News anchor Jeff Lawson interviewed him and took a special interest in Kai. Mr. Lawson continued to keep in touch with us about Kai and his progress. Also, my sister, Lynn, and her then-husband, Dr. Larry Killebrew, walked 50 miles along the Mississippi beachfront in July 1999, one of the hottest months of the coastal summer. The walk lasted 22 hours and almost $20,000 was raised.

As all these wonderful people had a specific goal, so did Kai. He shared with us that he felt God's mission for him was not complete. He felt that by sharing his testimony with others, he could turn one lost soul, and if he turned that one person to God, then his life did indeed have a true meaning.

Without our faith in God and the love and support of our family, our church family and our friends, I don't think we could have made this journey. I would encourage anyone without these vital links in their lives to reach out and find them, because life's road can be very dark, lonely and empty.

Kai,

I know these last few months were long and difficult for you. Not once did you complain.

Even on those hot afternoons when you would play golf with your dad, Tanner and friends, I would worry about you. In your life, there was no worry, selfishness, fear or failure. There was only challenge, success, winning, strength, courage, love and wisdom. These are priceless possessions that God gifted you with.

Kai, we knew you were tired. Telling you that it was okay to let go was very hard for your family. But our prayer to God was that if He could not heal you physically, then would He please not let you linger and continue to suffer. God answered our prayer, and my comfort is that when you crossed over, Mama Jean was there to take your hand.

As I close my eyes, I will always remember the day of your birth; the first time I saw your eyes; your first tooth; your beautiful smile; the first word you spoke; the first steps you took; the first hug; your first birthday; your first day of school; your first t-ball and soccer games; your first tennis match; your baptism; your first date; your first and only love; your prom; your high-school graduation...and that we were with you, holding your hand and whispering, "I love you," when God was saying, "Come on, Kai. You're closer to My house than you are to yours."

You have filled our hearts with love and memories that will last forever, until we see you once again.

We love you, Kai.

Mom

She called me that day, concerned that the story needed an ending. She took it upon herself to sit down and put her feelings down on paper. It wasn't easy, but she wanted others to know that Kai's life had a specific purpose...and she wanted to say a final goodbye to Kai.

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