Kinsey T. Morrison Defeats Aplastic Anemia Dragon
CaringForKinsey.com
About Kinsey T. Morrison
Hi! My name is Kinsey Morrison. I was diagnosed with aplastic anemia (the “dragon”) on March 21, 2002. We left Albuquerque, New Mexico to go to Milwaukee, Wisconsin where a specialist in this disease—Doctor Big Dog (David Margolis) could help me get better. After two years there, we moved to our new home in Kentucky where I live with my parents and little sisters, Jillian and Teagan. I'm I'm a Girl Scout now and a member of the school’s Chess Team. I love acting, going to plays, camping, playing chess and other board games, playing anything with my sisters, and reading (or being read to)—especially Harry Potter or mysteries like the Three Investigators.
I am alive today thanks to hundreds of transfusions of blood and platelets and the wonderful people who donated them! Thanks to a lot of love and support from my family and our friends and thanks most of all to Dr. Big Dog who promised my parents he would “work his butt off” to save me, and he did.
There are many heroes in my story—including my aunt Tee Cee (Teresa) who had my little sister using my mom’s frozen embryos in an effort to create a bone marrow match. Teagan is now two and is a perfect match!
After nearly two years of being a constant patient and practically living in the hospital, I now get to live a pretty normal life. I still get labs drawn every month (they were all normal last time!) but I no longer take any medicines or have transfusions or breathing treatments or biopsies. It’s pretty neat getting to be like a regular kid after all of that!
I didn’t get to go to school during my kindergarten year and when I started first grade, I got moved up to second (my teacher said I was really smart). I’ll be in the fourth grade Fall 2005 at Harmony Elementary. I really love school.
A lot of people ask us when and how this happened, what were the symptoms, how did we know something was wrong. Here’s the whole story of how the dragon entered our lives.
On March 13, 2002, my Mom was giving me a bath and noticed several little red spots and a couple of bruises on my body. She called the doctor the next morning and I went to see her after I got out of pre-school. The doctor said it was a virus and would go away on its own. I went to gymnastics with my sister that night, volunteered at the Red Cross on Saturday, and attended my best friend's birthday party on Sunday. Sunday night, my parents noticed more spots and several more bruises. They called the doctor again and I went in Monday morning. They took a blood test that showed my platelets were VERY low and said I would have to be admitted to the hospital. After packing my Barbie suitcase with my favorite pajamas, tooth brush, and stuffed animals, I rode down with my mom to be admitted. I was a little scared but it was kind of exciting since E.R. was my favorite TV show and I love the Discovery Health Channel.
The doctors there began treating what they thought was something called I.T.P. They thought I'd be better and able to go home the next day. But instead of getting better my platelets dropped even more. They did more tests—sticking me with needles each time and making me cry a lot. My parents cried, too. The test showed that not only were my platelets low but that ALL my cells were low. The doctors told my parents that it was likely I had leukemia and would need to be taken by ambulance to another hospital for more tests. On March 22, I had my first ambulance ride, but by this time none of this medical stuff seemed very exciting and I was pretty scared. My mom held my hand and I took my magical unicorn with me, but I was ready to go home, not to a new hospital.
We had to wait a long time before the doctor was ready to do my bone marrow test and biopsy. A nice lady came up to me while we were waiting and said, "That little boy over there has cancer, too." I said, "I don't have cancer!" My mom had talked to me about leukemia but had never mentioned cancer—something three of my grandparents died from. A few minutes later another nice lady said, "This young woman's little brother has leukemia, too." My mom told her, "Listen, we're not in denial, but we haven't had a diagnosis yet." When the doctor finally came to take us down to the recovery room where he would do the procedure, I got really scared and started to cry. My mom held onto me while they gave me this medicine that made me fall right over in her arms mid-scream. My parents say they want some of that stuff at home! When I woke up, it was all over. I could finally have something to drink! The doctor told us it would be a few hours, so when I was awake enough we went back upstairs to wait some more. I had to get a transfusion of platelets while we waited so that required another needle stick!
Kinsey and bear in the hospital.
When Dr. McKinnell came out into the playroom/waiting room a little while later he said, "It's not leukemia." My parents were so relieved— for about 15 seconds until he said, "Well..."
They went off into another room while a nice lady named Ms. Paula played with me. There, the doctor told them he thought it was aplastic anemia. They had the same reaction most people have, "What is that?" He told them a little about it and explained that there were varying degrees of the disease. If a person has 25% or fewer of the cells he or she should have, it's considered severe. He mentioned that my sister might be a viable bone marrow match. He said several other things, but my parents both say it's all kind of a blur. My mom finally asked, "Is this better or worse than leukemia?" He explained that overall it was about the same, better than a few types, worse than most. He told them they could take me home—which we weren't expecting at all—and that we'd have more news on Monday.
The next day, Friday, March 22—earlier than expected—the bone marrow biopsy came back and confirmed the diagnosis and clarified the severity. I had 5% of the cells I should have and so it was "very severe," the worst news we could have gotten at that point. We'd need to go back to the hospital on Monday so my sister and I could be tested to see if she was a match.
We all went in on Monday, me, my parents, my little sister, and my Aunt Ann (a nurse from Kentucky). They decided my little sister would go first and she screamed and screamed and creamed, saying, "Please stop. Take it out. Take it out." The first stick didn't work and they had to try again. That got me pretty upset and I started crying before it was even my turn to get stuck. I had to get another transfusion, this time red cells, which takes a lot longer. The doctor told us we'd know if my sister was a match within 3-7 days. We were all hoping and praying she was a match. We'd go to Tucson, the nearest transplant center, where we were both born and where we have lots of friends. It would be bad but over fairly quickly. I would start getting well. Jillian would only be sore for a couple of days. And after a month or two, we could all come back home! The sibling match, the doctor told my parents, would give me the best chance for winning the race against this disease. So we went home and waited and waited.
On Wednesday, March 27 we got the news, again earlier than expected. My sister was not a match. Every person has 6 identifiers in his or her bone marrow. A viable match has at least 5 of the 6 just alike. Jillian had only 3. We were all sad, but of course it meant Jillian didn't have to be stuck anymore. The doctor explained in more detail the “medical management” option and asked us to come in the following Monday for more tests. He said I'd be admitted the following Thursday and they would first surgically put a broviac (central line) in my chest (a device that allows the doctors and nurses to draw blood and give blood transfusions or medicines without sticking me every time) and then begin treatment. He said I would be in the hospital for 2-4 weeks.
The next day my family and I were going to the zoo. The doctor said that would be okay since it was outdoors and if I agreed to stay away from other kids there and be careful. But that night I started feeling bad. I got a high fever and the medicine my parents gave me didn't help it much. Thursday morning, they called my doctor who said I needed to come in. After he saw me and did more blood tests (another needle stick!) he said I needed to stay in the hospital. I was really angry because my parents had promised no more sticks until Monday and they said I'd have a whole week before I had to go back in the hospital. I wanted to leave and just go to the zoo!
That night my parents noticed that my jaw was swelling. I had told them my gums hurt on one side but they hadn't been able to see anything and neither had the doctor. When they all looked that night, however, they could see a big sore on my gums. A dentist came in the next morning and they took x-rays and looked some more. By then my cheek looked like it was full of candy or something not so good and my neck was a little swollen, too. The dentist thought it was probably a molar that was trying to come in and because of my aplastic anemia, my body wasn't going to let it happen without causing this big infection and keeping me from going to the zoo and playing at home with my sister.
They started giving me more antibiotics (a different kind) and it got better right away. That Sunday was Easter. My parents left the Easter Bunny a note telling him where I was. He found me and left a big basket and lots of eggs to find all over my hospital room (it was my third room in three days so I couldn't believe he actually found me). My mom spent the day with me outside at Pete's Playground—a great playground just for kids in the hospital. When my IV machine would start to beep, we'd plug into a wall and sit inside a little playhouse, working puzzles and playing games (there's a picture of me in the playhouse in the photo gallery). When I was fully charged, my mom would swing me or play with me on a caboose or teeter totter. We even hunted for eggs, and ordered pizza! It was a great day!
Right before the playground closed, a lady from "child Life" came to talk to me about the "surgery" I would have the next morning to put in my broviac. My parents had called it a "procedure" just like the bone marrow biopsy, and no one had said I was having "surgery." She showed me pictures and talked about what they would do and where I'd have to go—but I wasn't looking at the pictures or listening. I was just thinking, "Surgery!" My mom had two big surgeries a year and a half ago and I remember she couldn't even walk for days after the second one. So I got really, really scared and wanted to go back to my room. I closed my eyes and didn't want to talk about anything. My mom kept telling me how great the broviac would be because I wouldn't have to be stuck with needles anymore, and she told me they'd give me a new IV the next morning while I was asleep from the medicine so I wouldn't feel it. That part sounded good, but a few hours later, just a few hours before my surgery, a nurse came in to draw blood through my IV and saw that my vein had collapsed. She called the doctor to see if they could just wait until the surgery to start a new one and he said, "No." I had to get a new one, even though I wouldn't need one anymore supposedly after the surgery. I screamed and screamed. I was beginning not to believe anything anyone told me. I told my parents that night, "It feels like everyone here is attacking me." Even when I would sleep, someone would wake me, poking at me, sticking me, touching me.
My parents were taking turns spending the night with me at the hospital and I had gotten to the point that I was afraid for either of them to leave for even a few minutes. I would count to 30 or maybe as high as 38 when either went to get me juice or ice cream or something. And if they didn't make it back before I got to the agreed-upon number, I would scream for them so that everyone heard me in the whole hospital.
The broviac - yuck!
The morning of my broviac surgery they were both there and I kicked and screamed and tried to claw my way off the gurney all the way down to the surgery prep area. They had said I needed to wear a mask and I kept tearing it off. I thought if there was any way I could escape I'd run and run and run and maybe they'd do surgery on someone else and forget all about doing it on me. But I couldn't escape and I screamed and cried until both my parents were crying, too. A doctor came and gave me a little medicine in my IV and I started to whimper instead of scream. Another doctor told my parents they should leave because I was asleep. I sat up and said, "No I'm not." They made them leave anyway but I don't remember much after that until I was waking up asking for water. When I was awake enough, they let me go back to my room to sleep some more.
The next morning, I was moved to yet another room in ICU so they could watch me closely as they began giving me the powerful drugs that would supposedly begin to make me well. The doctors told my parents the drug could cause hives, fever, chills, and could even make me stop breathing. They both stayed all day, watching me anxiously as the alarms on my vitals tracking machine kept sounding. When the nurse said after the 10th time, "It's okay. There's no real problem," my mom asked if the purpose of the machine then was to give the parents a heart attack. I had three reactions, mostly to the medicine that was being given to prevent reactions: Benadryl. At the end of the 8-hour dose of ATG (a serum they get from horses!) I got a high fever; I had experienced some hard chills and leg spasms, but that was it. My mom later said, "You know your life is messed up when you count it a good day that your child did not stop breathing."
I had done so well that by 10 that night, they moved me again to a sub-acute room next door to the first room I'd had 5 days earlier. The next day I was moved again (to be closer to the nurses' station they said). I had no reaction to the next 3 days of medicine and was moved again back to the general pediatric ward. In each room, I was isolated, unable to leave (except to change rooms) and everyone coming in had to wear gowns and masks, even my family.
Nap time at the hospital.
I started seeing a hospital teacher every day, and even though I haven't started kindergarten yet, she worked with me on 2nd grade reading and computer skills. I also started seeing a doctor who helps with feelings and doesn't look at or listen to anything about my body. She was great and I made up a pretend city called Rainbow Town that I told her all about. It's actually just my own neighborhood, but I'd been away from it for so long, it seemed almost like pretend.
Some of the doctors and nurses got mad at me because I was so mad at them. I would yell at them sometimes, "It's all your fault. I hate this place. Get out of my room. Don't touch me!" I know it wasn't really their fault and they were trying to help me, but they would usually just start doing something to me without even saying hello or asking. My parents had a hard time trying to give me consequences for such bad behavior when they knew how scared and angry I was and they kept saying some of the medicines were making me have "mood swings," too. I just kept asking everyone, "When can I go home?"
On Monday, April 9, I finally got my wish! I went home to Rainbow Town (Ventana Ranch) and even though I couldn’t leave my house or yard, I was so glad to be there. But it didn’t last long. I kept getting fevers and gum bleeds. I had to go to the clinic almost every day. I spent lots of time in the E.R. and worst of all, I had to go back into the hospital a couple of times. The last time, I was so sick and the doctors couldn’t figure out why. They thought I had an infection but no one knew where or what. My parents were so scared they started doing research and found out that one of the top pediatric specialists in the world worked at Children’s Hospital of Wisconsin. My mom called him and within a week, we flew there by air ambulance on May 9.
I was so sick, the doctor told my mom the next day that I would probably only live 4 weeks. But then I started to get better and stronger and a month later, got to leave the hospital again, this time to stay at Kathy’s House—a home away from home for families dealing with a medical crisis. We lived there four months and when my parents realized I wasn’t responding to the treatment and would need to stay indefinitely, we decided to move there. And that’s where we stayed for two long years—with Dr. Big Dog, Lynnette, Nurse Heather and all the wonderful staff who helped save my life.
I’m glad to be living in Kentucky now where we have grandparents, many aunts, uncles, cousins, and friends.
Thanks for reading all about me and sharing my story. Remember, if you can, please donate blood and platelets. You might just save someone’s life—like mine.
