by her mother
Kari Lain was born on September 9, 1982. She joined her dad, Dave, her mom, Donna, and her sister, Andrea, who was 5 and ½ at home in Crestline, California in the San Bernardino Mountains. My name is Donna Lain. I had the honor of being Kari’s mom. Kari had a fairly typical childhood. She was bright and inquisitive. She spent a lot of time with her grandparents, my mom and dad, Ann and Tom, since they retired the year she was born and we moved next door to them when Kari was one year old. Kari was small for her age. She was a determined child. She enjoyed school and was always very conscientious about studying and homework. She worshipped her sister, Andrea, and her cousin, Jason, who was 7 years older than Kari. She always wanted to be with them. If they went somewhere, she wanted to go, too. Kari took dance lessons starting when she was 3 years old. She was active in Girl Scouts and joined her first troop when she was 5. Kari started playing softball when she was in the fourth grade.
When Kari was 10, she developed a rash on her cheeks. I took her to see a dermatologist because I thought she had an allergy to soap or something else. The doctor said he thought it might be a skin disorder but he ordered a blood test to rule out Lupus. This was in May of 1993. Kari was in the 5th grade. When we returned to see the doctor, he told us that Kari had tested positive for lupus. Next, we took Kari to see our family doctor. He referred us to a rheumatologist. When we took Kari to see the rheumatologist, he ordered many more tests. At the return visit, we were told that Kari did indeed have lupus. The doctor told us to keep her out of the sun and to come back in 3 months. On the way out of his office, he handed me a pamphlet on Lupus SLE. From the time we had first learned that Kari had tested positive, Dave, Andrea, and I had been at different libraries researching the disease. We learned that there were 2 types of lupus, SLE and discoid. I called the doctor’s office and said if he gave me a pamphlet on Lupus SLE, does that mean that’s the type of lupus she has. I was told this is correct. The rheumatologist who was treating Kari was an adult rheumatologist. He didn’t know too much about children with the disease.
While researching the disease, I found a hospital that was about 90 minutes from where we lived that had pediatric rheumatologists. I called and made an appointment for Kari to see one of these doctors. We began going to see the doctor every 4 to 6 weeks. Kari would have blood tests at each visit. These tests would indicate when her lupus activity was the strongest, which meant that her body could be attacking healthy cells and could cause damage to any of her organs. When Kari first saw this doctor, she started taking plaquenil, which is a malarial drug that dramatically reduced the rash on her face. When the counts got too high, Kari started taking prednisone which would protect her and bring the counts lower. Prednisone though had side effects such as making her very hungry which would lead to weight gain. Kari was still active in girl scouts, dance, and softball. She received awards from school for good attendance and being an outstanding student. She had several close friends who knew about her struggles with lupus. Kari’s doctor referred us to a pediatrician who was closer to our home. The pediatric rheumatologist consulted with this doctor and advised him on Kari’s treatment. Kari suffered from arthritis occasionally over the next several years. She would take other drugs and her prednisone dose would be raised when her symptoms worsened. When Kari was in the seventh grade, she became sick with laryngitis and then bronchitis. It was shortly before Christmas. Her regular doctor gave her antibiotics but she wasn’t getting any better. I called the specialist and he told me to bring her in. When he saw her, he said she was having a flare up of her lupus. He put her in the hospital for the day in an outpatient section. They gave her IV fluids and antibiotics. The doctor gave us his home phone number. This was a scary time. I remember thinking, wow, the doctor’s home phone number. My next thought was this is not necessarily a good thing. Kari continued to go to the doctor every 1 to 2 months. She still took the plaquenil and prednisone along with other drugs depending on her symptoms. There is no cure for lupus but there are treatments for the symptoms. Kari joined the school band in junior high school. She played the clarinet. She continued with dance also. She still played softball until she started high school. At that time, Kari’s age group softball teams played during the heat of the day when the sun was the strongest. The sun can be very dangerous for lupus patients. Kari gave up softball. This was very hard on her. Kari had the biggest heart of anyone on her team. She worked hard to earn the shortstop position on her team. She went to every practice and never missed a game. If she had a band performance or a dance recital the same day as a game, she did both. Kari loved to play softball so much that if the game wasn’t going to be played because the team they were playing didn’t have enough players, the coach would ask for volunteers to play on the other team. Usually no one would volunteer to play, but Kari would. She just loved it so much. She didn’t have a lot of natural athletic ability. She had to work hard and practice a lot. When Kari started high school, she tried out for the school choir. She had a very pretty voice. She loved choir and singing. She was also in the Carolers group and performed around the Christmas holidays each year. The group wore Dickens costumes and caroled in the village in Lake Arrowhead and at holiday events at school and in the community. In her senior year, she was elected President of the Women’s choir. She sang with the women’s choir and the combined choir and was the teacher’s aide for the Show Choir. She had met the choir teacher several years earlier when she started babysitting for the teacher’s son. Nick was 2 at the time. Kari still kept up with her activities while she was receiving treatments for her lupus.
When Kari was a junior in high school, she fell off the bus when she was climbing the steps to enter the bus. I blamed her heavy backpack and heavy shoes but it was obvious that something was wrong. Kari’s doctor ran tests. It turned out she had developed myositis, the lupus had attacked her muscles. She had overall muscle weakness in her whole body. She started several new medications and treatments. We met with her counselor and consulted with the doctor about maybe having Kari do home schooling during this time but because she was in Chemistry and Geometry, Kari decided she would rather continue going to school. She started going to the hospital every Friday to receive high dose IV steroids. The doctor was trying to get the lupus activity to slow down. This was a scary time for us. The treatments would cause Kari’s blood pressure to get very high. The nurses would have to consult with the doctor and give her other medications to lower her blood pressure. Kari remained active with the school choir and kept her grades up. She still babysat also. It’s a testament to her spirit that she never said, why me? Was she upset? Of course, but she never let it stop her. I remember many times when we would be at the hospital waiting for her blood pressure to be low enough that it was safe for her to leave. As soon as it was, she would tell me on the way home to drop her at the high school because the choir was singing at the football game. I did, but I cried all the way home.
Kari’s doctor discovered that she might also have developed kidney involvement, possibly at the same time as the muscle involvement. She had a kidney biopsy the summer between her junior and senior year that indicated she did have kidney involvement. The doctor also had her have an echocardiogram to determine what condition her heart and lungs were in. This test indicated that Kari had PH, pulmonary hypertension. She was referred to a nephrologist for her kidney treatment and a pulmonologist for her PH. She started receiving treatments in the hospital every month of IV cytoxan, a chemotherapy drug. Her kidneys and muscles responded to the drugs. One of the side effects of the cytoxan was hair loss. Several days before her senior pictures were taken, she lost most of her hair. This was a sad time. I took her to a beauty supply shop to look at wigs. She tried several on but I took a look at her face and realized that she was very, very upset. We both went to the car and had a good, long cry. Kari had the idea that those crazy late night ads for men who were balding might have some truth to it. We went to another beauty supply store and explained what she had in mind. Sure enough, they had a spray that matched her hair color. She lightly applied it to her scalp and it looked like her hair was fuller than it actually was. This fooled many of her teachers and friends. Her hair looked pretty good for her pictures, too. Shortly after she started her senior year, though, she had less and less hair. She went and got it cut very short. The cytoxan treatments continued but at a lower dose so her hair started growing in again. It grew back curly, and a richer color than she had before. Kari was still active in school, in choir, and babysitting. She still visited the doctor every month and was on many medications, but it didn’t slow her down. I haven’t mentioned the rest of her family but Andrea, although she was living about an hour and half away at college, remained active with us. Kari’s dad, Dave, rearranged his schedule so that he could drive her to school and to babysitting. Her grandparents picked her up from school. I was Kari’s supporter. I went to all doctors’ visits, hospital admissions, tests, lab work, etc. When she was feeling down, I sat with her and listened to her worries. Her fears were my fears. If I could have traded places with her, I would gladly have done so. Kari started applying to colleges. She decided it would be best for her to live at home and go to school. By this time, she was on oxygen at night for her pulmonary hypertension. Her dream school was the University of Redlands. She found out she was accepted to this school shortly before she graduated from high school. We were so proud of her. She had several friends who were also attending this school. She tried out for the school choir and was accepted there also.
Kari’s dad rearranged his work schedule to make him available to take her to school and him or I would pick her up. Just before Christmas in 2000, Kari was taking a math final. She called me to tell me she didn’t feel good. She was going to try to take the final but wanted me to come and wait for her. I did. As soon as she finished her test, I called the doctor. He told me to take her to the hospital. She had pneumonia. By January of 2001, her pneumonia had cleared up but she was short of breath. She couldn’t walk too far and she would be winded. Her doctor was concerned. He had her hospitalized towards the end of January so that she could be evaluated. A cardiologist said that she was suffering from severe pulmonary hypertension. This was caused, they said, because the lupus had destroyed the blood vessels in her lungs. This caused her heart to become enlarged because it had to work so hard to pump the blood to her lungs and throughout her body. He told us of a treatment that was being administered for this. She was transferred to the hospital we had first taken her to when she was first diagnosed with Lupus. A pediatric cardiologist and a pediatric rheumatologist agreed to team doctor her. The treatment they recommended was flolan. This required that she would have a central line inserted in her chest that directly fed into her heart. This would be hooked up to a tube that connected to a cassette in a pump. She would receive the flolan through this tube all the time. The doctors told us about this. They said without the treatment, she had approximately 6 months to live. Kari decided to participate in this treatment. School was just starting up again for the new semester so Kari decided to apply for a medical leave for the semester. She was granted the leave. On April 3rd of 2001, she entered the hospital. They did a right heart catherization that measured the levels in her heart. They started her on the flolan by IV in the cath, lab and found a dose that was good for her pressures and didn’t make her sick. The next day she went to surgery to have the central line inserted. This was done without anesthesia because it was too dangerous for her to have the anesthesia. Kari told the story of the surgeon inserting the central line while she was awake. She amazed us with her stamina. The flolan had to be mixed daily and the cassette changed once a day. Somehow, the nurse coordinator decided that I should learn to mix the drug and I could teach Dave and Kari when we returned home. No pressure there! Kari couldn’t leave the hospital until I learned how to mix. The nurse came every day for 3 days and I eventually caught on. Learning to operate the pump was also quite an education. Dave and Kari and I had some scary times when the alarm would sound and we would have to call the help line to find out what to do. Kari was a quick study. She caught on fast. The cassette had to be kept cold all the time because it lasted 24 hours when it was cold but only 8 hours at room temperature. Therefore, the bag that held the pump and cassette had to be surrounded by ice packs. From that moment on, wherever Kari went our emergency supplies and ice packs went too. Kari spent a lot of time with her grandparents during this time, too. She returned to the University of Redlands in the fall of 2001. Dave drove her from class to class because walking was too difficult for her. She still performed with the choir and babysat on the days she wasn’t in class. Shortly before the spring semester of 2002, Kari realized that attending school full time was going to be too much for her. Grants, scholarships, and school loans weren’t offered if you weren’t a full time student. Kari decided to leave this school and explore other options. She found that she could get a degree through on-line classes with National University. Her dream was to become an elementary school teacher. She still babysat several days a week. She enrolled in school. She still saw her doctors every month. She was on several medications and changes were made to her flolan dose. The flolan opened up the blood vessels in her body and eased the pressure on her heart. She suffered, though, from many side effects from the medications such as headaches, nausea, jaw pain. Kari did research on PH and became active on the PH Association chats and information lines. She educated herself about this disease and shared her story with others. She made many, many friends on-line. We also joined a Pulmonary Hypertension Association Support Group. Kari met several people who also had PH and were on flolan. We tried to attend every meeting. We also attended the seminar that the organization sponsored in the summer of 2002. Kari met many people who she had been chatting with online. We attended several informative sessions and support groups. One of Kari’s favorite parts of the seminar was the Fashion Show. She, along with several other people, demonstrated how different outfits could be worn that could mask the central line. As a result of attending this event, Kari decided to wear a fanny pack with the cassette and ice bags and pump instead of the over the shoulder bag. She was always experimenting with different ideas such as wearing the pump around her leg as she saw several women from France do.
In May of 2003, Kari had an episode at home where she hyperventilated and almost passed out. We consulted with her doctor. She went in several days later to see the doctor. By this time, she was very weak. She didn’t have the strength to walk through the lobby. We had to sit down several times. Her pulse ox had always been in the high 90s. This day, though, it was in the low 80s. This was an indication of the oxygenation in the blood. Her levels were very low. Her platelet count was also very low. Kari was hospitalized. The date was May 15, 2003. Kari received several tests to try to determine what was happening. She didn’t have much of an appetite. She was given platelets to try to bring the count up but she had a severe reaction. It seemed her lupus had caused her body to reject the platelets. She was transferred to the intensive care unit so she could be monitored more closely. Dave and I stayed at the hospital. Andrea went and picked up my Mom and she stayed with Andrea at night at Andrea’s apartment. We were all at the hospital with Kari every day and I spent the night with her, too. She didn’t want to be alone. She was on an oxygen mask. Her flolan dose was increased several times to try to further open up the blood vessels and allow more oxygen to get through her blood. She was pretty tired. We were all pretty worried. Dave’s Mom came for a visit from Illinois. We brought Kari her laptop to the hospital and she read her e-mail and sent out an e-mail on May 26th. My Mom’s birthday was on May 25th. My dad had passed away due to complications from a stroke in October of 2002. Andrea and Kari had a star named for my Dad and presented my mom with the certificate on her birthday at the hospital. At 4:15 a.m. on Tuesday, May 27th, Kari got up to use the bathroom. When I was helping her back to bed, she hyperventilated. I was holding her in my arms while I pressed the call button for the nurse. She became unconscious. Her doctors were contacted and a doctor from intensive care came right away. Kari was pronounced dead at 4:17 a.m. Her heart had stopped. So did mine. Dave had come down with a virus and a temperature of 102 on May 20th. He kept in constant contact with the doctors and Kari and Andrea and I but stayed away so that she didn’t get sick. He was returning to the hospital on the 27th and moving in to Ronald Mc Donald House because he was no longer contagious. I had to call him and his Mom at our house to deliver the news. Andrea was back at her apartment because she had to go to work the next day. Telling her about Kari’s passing was the hardest thing I’ve ever had to do. My mom was staying at Ronald Mc Donald House. I think I must have been in shock as I made these calls. My daughter had just died in my arms. I asked that a priest come to pray for Kari. I asked the doctor to stay until my mom arrived because I didn’t know how I could tell her that Kari was gone. I also called my sister, Gail who came right over with her husband, Tommie, and my nephew, Jason. Jason was married with 2 children but kept in close contact with Kari.
We were all in shock. Family and friends rallied around to celebrate Kari’s life. We found out during the next several days, weeks, and months just how many lives she touched. I prayed for Kari all of the time. I believe my prayers were answered. It wasn’t however, the answer I was looking for. Andrea formed Team Kari and we had 28 team members who participated in the 5K Lupus Walk for Life. We raised approximately $2,000.00 to go towards research. Hopefully one day a cure will be found.
WHO WAS KARI LAIN
To quote from Jack Nicholson’s character in the movie, “As Good As It Gets”, “If she smiled at you, you had a life.” I wanted to tell you several stories about Kari that will hopefully explain the type of person she was. She was funny, sensitive, warm, generous, passionate, loyal, beautiful and talented.
- When Kari was a junior in high school, she was good friends with a girl in choir who had a physical handicap and used a walker to get around. At the time, this girl was a freshman. Kari was aware that this girl needed help getting around. During performances, rehearsals, out-of-town trips, Kari would make sure that someone helped her. This one particular incident happened when Kari’s lupus had attacked her muscles and she was very weak. The school had a fire drill during the day when Kari and her friend were in choir. All faculty and students were aware of the area they needed to go during fire drills. Kari and her friend started off for the location. The teacher and other students had gone on ahead. Kari found herself struggling to help her friend. She spotted a friend who was pretty strong. He was on the football team. She called to him and explained to him that she needed help. He came over and picked Kari’s friend up and carried her to the evacuation area. Kari and her friend often laughed over this. When Kari was graduating, she made sure that some other students in her friend’s class would look out for her.
- When Kari was 17 years old, I was reviewing one of my phone bills and found a charge that I couldn’t identify. When I contacted the phone company, they said it was for a call to a psychic. As my daughter, Andrea, was away at college, I asked Kari if she and her friends had called a psychic from our home phone number. She said she hadn’t. Then she added that she couldn’t. I asked her why she couldn’t. She told me that you had to be 18 to place a call to a psychic hotline. I said that anyone could call because how would they know the age of the caller. Her answer, “They would know I was only 17, because they’re psychic.”
- In January of 2003, Kari went to her doctor’s for a regular monthly visit. She had a sore near the site on her chest where her central line was. Her rheumatologist called an infectious disease doctor to consult. This specialist thought it looked suspicious and hospitalized Kari. We were leaving the day after this happened to go to Las Vegas for Kari’s cousin, Jason’s wedding. Kari was very disappointed that they were keeping her overnight in the hospital. She explained to her doctor’s how important it was to her that she attend the wedding. The nurses from the clinic that Kari visited every month, made picket signs, that read “Free Kari.,” “Vegas or Bust.” The doctors pushed for cultures to identify the infection and start her on oral antibiotics. They released her on Friday. We missed our rental car reservation and our clothes that were at the cleaners since she was released so late in the day. But, we made the wedding. In fact, Kari used the camcorder to record it for Jason and Kaycee.
- A short time before Christmas of 2002, Kari found out that a close friend of hers wasn’t going to have a Christmas. Times were hard for the friend and her family. Kari talked me into having my work adopt the family. Kari and I went shopping and Kari picked out the clothes and toys for the children. She paid for a microwave with her own money. Andrea and I went with Kari to drop all of the stuff off at the friend’s house on Christmas Eve. Kari told her friend that it was from an anonymous donor. Her friend suspected that Kari made this happen but it wasn’t confirmed until we told the friend at Kari’s service after she had passed away.
- Kari would sometimes stay with a couple of neighborhood boys when their parents would go out. The oldest boy wasn’t home one evening when she was watching the youngest boy. The older boy was later dropped off after baseball practice. Kari saw that he was struggling to walk after he was dropped off. She took his younger brother and went down to the end of the driveway and they carried him into the house. He had been injured at baseball practice and was in a lot of pain. Kari checked out the injury and called his parents. They came home right away and took him to the hospital. Kari never panicked. She was reassuring to the boys and their parents but took care of things quickly. She was upset that the people that dropped him off after practice hadn’t been more helpful.
- Kari was very active in researching both lupus and pulmonary hypertension. She would post questions and take time to answer other’s questions on the pulmonary hypertension website. After Kari passed away, a man called us and told us that he was devastated to learn she had passed away. He said he had learned more from her about pulmonary hypertension than from anyone else. He said that she was passionate about the disease and the importance in finding a physician and hospital that knew about PH.
- When Kari was 17, she started receiving IV cytoxan treatments to try to get her Lupus under control. This would require an overnight stay in the hospital. Kari really didn’t like to stay in the hospital. She was able to talk the doctor into letting her leave as soon as the treatment was completed. Since they would give her lots of fluids and something to help with the nausea before and after they gave her the cytoxan, she would still be in the hospital for about 9-10 hours. But, as soon as she was done, we would leave. Sometimes that was 1, 2, or 3 a.m. Because of Kari though, for the treatment that she was scheduled to receive in February of 2001, the doctor said the treatment could be done on an out-patient basis in their day center. This would be the case for all kids who needed this treatment. Unfortunately, though, Kari had been transferred to another center because her pulmonary hypertension was out of control before she could go for this treatment. She was then switched to oral cytoxan.
- One of our family traditions was watching the Hollywood Christmas Parade. It was always shown on a local channel on the Sunday after Thanksgiving. The Sunday after Thanksgiving in 2002, Kari and I sit down to watch the parade. Guess what? No parade. We talked on the phone to Andrea. She was looking for the parade as well. Kari did some checking on line and found that the parade would be televised nationally on the next Sunday. We all tuned in at that time to watch the parade. But, it was completely different. A stage was set up and famous personalities would perform. Very little of the actual parade was shown. Needless to say, we were all very disappointed. Kari, though, got online to the Hollywood Chamber of Commerce. She e-mailed them to tell them how upset she was that the parade was not shown on the date it always had been. The parade had actually taken place on that date; it was just not shown live. Kari received a reply from the Chamber of Commerce. She also was copied on the numerous other e-mails of people upset about this. The Chamber said that the local channel was unable to televise the parade live. They said that it would be shown locally though on Christmas Day. In 2003, I looked in the TV Guide. The parade was televised on a local channel the Sunday after Thanksgiving again. I was proud of Kari for speaking up about this.
As so often happens when we grow up, after high school graduation, friends scatter. Some keep in touch but it’s not the same. It was hard on Kari. She was dealing with some very serious life-threatening medical issues. Many of her friends would call or e-mail occasionally but they had moved on with their lives. So, I lucked out. I became Kari’s best friend, and she was mine. During the week, she did on-line classes and babysat while I worked. But, weekends were our time together. We did whatever Kari felt up to doing, going to the movies, walking around the mall, going to the PH support group. If Kari wasn’t feeling good, we stayed home and watched movies or just talked. Kari’s favorite restaurant was The Olive Garden. We would go sometimes once a week. She loved the salad and breadsticks. Many times after her monthly visit to the doctor, Dave, Kari, and I would go to The Olive Garden. After Kari passed away, one of her doctors wrote to us. She said that Kari had made a difference in her life. Kari had inspired the doctor with her smile, her terrific sense of humor, her endless love of children and people and life and her joy in all daily things. She said that Kari had inspired the doctor with her ability to accept, feel what she feels, yet move on without drama.
I feel truly blessed to have had this time with Kari. She was a remarkable young woman. She endured treatments, set-backs, organ involvement, etc. with dignity and grace. To again quote Jack Nicholson’s character in the movie, As Good as It Gets, “She makes me want to be a better person."
September 9, 1982 – May 27, 2003