my sister

October 12, 2009
By , portland, IN
When my mom found out she was pregnant with her, they told everyone she was going to be named “uh-oh.” Ironically, she had no idea that would be the perfect term to describe the situations later in my sister’s life. The first few years of her existance, she was a completely normal toddler. She was adventurous and a little trouble maker.
When she was four, my uncle, which was in training to be a paramedic, moved in with us. At that time, none of us had any idea the impact that would have on our lives.
One morning, I woke up to my parents scrambling around like I had never seen anyone move. Confused about the situation, I went upstairs to where everyone seemed to be rushing around. When I got up there, I found my uncle with my sister in his arms, and her face was blue. Her lymph nodes had swollen to the point where her airways were completely shut off. I was only nine at the time, and the first thought in my head was that she was dead. I had never seen someone look like that before. That was just the beginning to my baby sister’s long road ahead.
My family called 911, but decided we could get her to the hospital faster than the ambulance could get to our house and back to town, so my mom and uncle took off with her in the truck, to the hospital. My dad let my middle sister and me get dressed quickly, and we followed as fast as we could.
They got her to the hospital in less than five minutes and they immediately opened her airways back up, but Jay County Hospital had no idea what to do with her after that point, so she was taken by ambulance, lights and sirens, to Methodist Hospital in Indianapolis. She was rushed into emergency surgery to drain her lymph nodes. The doctors there wanted to do that first, and then try to determine what the bigger problem was. She went through a four hour operation, and she was put under because they had to cut deep into her neck to drain them all the way. I got to the hospital while she was in surgery, and my middle sister and I waited for what seemed like days for her to come out. When she finally did, she was angry and confused. She was screaming and hitting and crying, and had no idea what had happened to her, she just knew it hurt and mommy and her sisters were crying too. The doctors dressed her scar and she was kept there for a few days to make sure her body was stabilized.
The doctors came to the conclusion that her lymph nodes obviously weren’t working properly. The part that was supposed to open to drain the bad fluids no longer existed. In the operation, they had removed those lymph nodes completely.
This was only the beginning. With having fewer lymph nodes, also came having a weaker immune system. She had to live her life “in a bubble” for about the next year because my mom was so afraid that she would do something wrong to get sick, and it would seriously threaten her health.
After we got home from the hospital, Larissa got all the attention. I was so jealous that everyone was just waiting on her hand and foot, I didn’t understand that it wasn’t her choice, and I couldn’t comprehend that her life was seriously in danger. I thought that when they sent you home from the hospital, that meant you were all better. I will never forget when she got to take her bandage off of her scar, she was so happy before because it itched and always bothered her, but the moment she looked in the mirror, she began to cry. She didn’t want to live with that big ugly scar for the rest of her life. When she started school, she was still so self conscious about the scar left by her surgery. It healed, and she put scar healing cream on it, but it’s still there, and will be for life.

Nothing too dramatic happened in the next few years. She had to be careful about where she went, and who she was around, but all-in-all; she lived a pretty normal life. My mom decided she couldn’t keep her in a bubble forever, and that it was better for her to be able to have fun and not always worry. No one knew how long her life would last, so she needed to live it to the fullest while she could. Taking chances sometimes comes with consequences though, and she was hospitalized several times with different illnesses. Pneumonia and Mononucleosis seemed to be the ones that got her most often, but Larissa was strong and never let them keep her down. It has been an ongoing battle with her health through the years. She had several specialists in Indianapolis, and went to Methodist Hospital for check-ups, and they sent her to Riley Hospital. Although she had all these specialists, none of them could really seem to put a label on what her disease was. Her ear nose and throat doctor finally came to the conclusion that it was Nasal Pharyngeal Lymphangeoma. This disease was something that not many doctors knew much about, and it wasn’t much researched because only a few children in the U.S. even had it. They went through all sorts of processes and medicines to try to help her. She literally had fifteen medicines she had to take on a daily basis. Her life slowly was beginning to revolve around her health at such a young age.

Over the following years, things slowly got better. She was taken off of most of the medicines they had her on, and her health seemed to improve. Her body was stronger than it had been in a long time, and she stayed that way for about a year.
She is 11 years old now, and her disease still affects everything she does. About a year ago, she started having immune problems again. My mom took her back to the doctor here in Jay County, and they took some blood tests to find out how her white blood cell count was. The results that came back were not good. Her white blood cell count was below half of what it should be. She was sick with pneumonia again so they checked her lungs, and she was also diagnosed with chronic lung disease. Her specialists in Indianapolis didn’t know what they could do to help her anymore, because they thought things were better. She was referred to a specialists in Cincinnati, Ohio, at the children’s hospital there.
She was then diagnosed with Combined Immunological Disease (CID), and still chronic lung disease. Her lungs were functioning at 70% of what a normal person’s do, because there was so much stuff in them. There was a specialist at the children’s hospital for CID. He gave her this thing we call “the vest” and she has to use it every morning and every night. It is an actual vest that she puts on and it’s hooked up to a machine that makes it vibrate and shake her so that the fluid in her lungs breaks loose and she can cough it up, and a nebulizer, a breathing treatment she has to take every night too, with two different medicines in it. If her immune system continues to go downhill, at some point a bone marrow transplant may be necessary, which will hospitalize her for a few months.
To this day she still has to do the vest and nebulizer on a daily basis, and it seems to be working. She’s very active in sports and that helps to keep her body physically strong, so that will help her if and when she gets sick again. She has to take special precautions to help prevent her getting sick, like she can’t go to school if a certain percent of students is out sick, because the flu may be going around. Everyone in our family has to get a flu shot and an H1N1 shot to prevent us from carrying it and infecting her with it, but she is not able to get the shot because it’s a “live vaccine” and her body wouldn’t even fight it, so she would get really sick. The school system has a hard time understanding that there are things they need to do to accommodate her needs, but those are things she can’t change. She doesn’t want a lot of people to know how sick she is, because she doesn’t want them to see her differently or judge her. I just hope my sister knows that I would do anything to help her, and all I want is for her to not have to go through this anymore. Hopefully someday the doctors will be able to give her a medicine to fix this, but all we can do is wait.

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EmilyOlive This work has been published in the Teen Ink monthly print magazine. said...
Oct. 26, 2009 at 9:49 pm
And I hope they do find a medicine. Thank you for sharing your story - and your sister's story; the story you both share - with us!
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