Karly and I have been at NIH since Thursday night. Things haven't gone as smoothly as we would have hoped, but I am figuring that everything is to the "Glory of the Lord". Today things are starting to settle in. I'm in a new room, hopefully quieter. Her drugs are finally going more smoothly without reactions. I just looked over at her, and she is smiling this very peaceful, small smile. One that seems like you are content with yourself. I asked her why she was smiling. She just giggled. I asked again, giggling again. Finally out of her mouth comes, "Have you met Huebert?" I say, "Nooo. Should I have?" She says, "Meet Huebert, then points to her IV pole." She is so funny. Huebert is by her side all day long, but attached for ~7 hours of the day. He is her friend. She has been working on an English paper while taking 50mg of benadryl and 25mg of Zyrtec. I'm not sure why she is not sleeping. She has to take 150mg of benadryl in a 24hr. period. She is amazing us that she is awake at all.
Good story a couple of weeks ago. I drove over to Crawfordsville to settle the boys in on campus. I thought that Trent would want some help just organizing his piles of stuff, after all Tyler did. No, Trent wanted to do it all. Okay, no problem. But Tyler, on the other hand, still likes mom to settle him in. I love it. It seems to get easier every year. This should be his last year on campus as a college boy. I just feel good about leaving him "settled". This is how I want to feel when I leave Karly in the hospital at night "settled". Anyway, I haven't got to the good part yet. I was praying for Trent on my way home..maybe partly because I didn't get to settle him in, or just because school has been hard for him with all our family issues taking away his focus. I was zoned "in my prayers", but when I finished and "zoned back on the highway", there was a beautiful rainbow. I asked God if this was an answer to my prayers that Trent would be okay. I knew my answer, and I was at peace. Isn't that awesome?!
I want to share a story Karly wrote when she was released from the hospital after cancer, but before we came home in April 2010. She has re-written it again this year with more clarity and dedicated to Kelsey "Enigma" Jo Koch. I want everyone to know how important the body of Christ is just in case you haven't gotten it yet. You are all important to our survival.
THE “ENIGMA” SURVIVES The alarm was set the night before. The next morning it began to play music. As I peeked open my eyes, I sat up and stared at the wall. Glancing around, there were two alarm clocks, two closets, and two of everything. While my eyes were struggling to focus, I began to slowly crawl out of bed. Looking down at my four feet, I baby stepped to my door. My head was pounding. I heard mom in the kitchen, and I continued to make my way to her. Finally, making it to the kitchen I explained to mom everything I was seeing was double and my head was in excruciating pain. She could see that my eye was looking lazy and not following the correct sight of path. She immediately called my doctor at the National Institutes of Health in Maryland. The next thing I knew mom and I were on a plane in route to the hospital.
My highly concerned doctors raised a bundle of questions. I was just confused. The next days consisted of scans, blood tests, lumbar punctures, MRI’s and a cocktail of other questions and perplexed faces. As more symptoms presented, I became more puzzling. While the doctors continued the tests and waited for results, my mother frenzied onto the internet for her own studies on my current symptoms. She and the doctor were emailing each other articles in the wee hours of the morning. My doctor told me that she needed more symptoms in a joking kind of way. Then without warning I awoke with no feeling on the right side of my chin. With this new symptom, it pointed mom in the right direction and with just enough evidence she asked the doctor to pursue this. My doctor asked some colleagues in the Cancer Institute to check me out. They were leery. I wasn’t presenting the way I should. By the time we did another lumbar puncture and received positive results, the blood work was finally showing cancer numbers. It only took two long weeks of looking, but with a diagnosis the treatment could start.
I can remember my immunodeficiency doctors who took care of my day-to-day health and then the new faces of the oncologists that came into my room to talk to mom and me about my diagnosis, Stage 4 Lymphoma. I didn’t know what Lymphoma meant, but their expressions were poignant. After they left, mom looked at me, and I asked her what Lymphoma was. With tears forming in her eyes she told me, “It’s cancer, honey”. When I heard those words I broke into tears, and mom hugged me. We both cried, and I felt so scared.
The next five months I endured chemotherapy along with other treatments. I vividly remember feeling miserable. The nurses would enter every morning with big smiles on their faces, and I had no thankful grace to offer them. I was so glad to see mom every morning, and she stayed until I went to bed. She kept a positive attitude, and it gave my depleted spirit refreshing hope. The gifts and letters I received were amazing. Cards filled my window space, posters filled my wall, and stuffed animals filled my bed and night stand. Gifts were abundant. Everything spoke of faith and hope, and that always put a smile on my face.
Being 10 hours from home, I didn’t think anyone would come to visit. To my surprise, I had the best encouragement. Three friends came and loved on me. They kept life exciting with stories and games. My family came to visit. Being with them was therapeutic. I was sad when they left, but the visitors didn’t stop there. My aunt and cousins would bring food saving me from hospital food for a couple of days. My boyfriend came for the Thanksgiving and Christmas holidays. We had fun recreating the random things we would normally do at home. As we talked, he was able to understand some of my frustrations. He helped me keep my sanity. The games, jokes, and stories that we were able to share really helped lessen the sensation of being cooped up, and I felt more normal and happy. Another saving grace was a visit from my youth leader. Although I was easily exhausted, she eased my struggle. She talked with me about my fears, and I told her how I felt. Having someone you can trust who will listen and talk to about how you truly feel lightens the weight of your heart. Not realizing it, I had locked up some deep feelings. Talking to her released some feelings of anger, fear, and I was able to be vulnerable. After every conversation my spirit felt freer. One more visitor really made me see the joy in life. She was one of my mom’s friends who drove the many hours out to Maryland to see us. Exuberance burst from her. Her personality not only perked me up but allowed my mom to laugh, smile, and joke around. During Christmas, she decorated the bland, white hospital room with every festive thing you could think of. I’m so thankful for each visitor. Each one of them brought me a little bit of home. Without a doubt, these friends helped me through one of the hardest things I’ve ever had to endure.
After arriving home, my new outlook on life found myself promising I’d never take life for granted. The whole experience brought my family closer, especially mom and I. Looking back at that traumatic event; it was the best thing that has ever happened to our family. We have more fun and laughter now. Every time my alarm sings, I’m unaware of what the day will bring, but I know with my family and faith that I am equipped with everything I need. My trust and God and the prayers I received ultimately brought me hope. Without hope, things would have been exceedingly more difficult. I’m so thankful for my life.
