Friday, September 30, 2011


Time is flying by. Time is so precious. Where does it go? Why does it go by so quickly? What ultimately is our goal for the time we have on earth? I think we know what our purpose is, but what about "the time"? I was challenged a few weeks ago about how we look at healing. One of the thoughts that stayed with me was how easily we will spend 3-4 hours watching a football game, but how hard it is for us to spend 3-4 hours praying for healing. I have begun "My Healing Devotional" by Dr. Terry Teykl with great expectations on how to use my time in prayer more wisely.
"My Healing Devotional: 40 Days to Pray for Wholeness"
by Terry Teykl

It has always been my conviction that we could do a better job praying for the sick. That's why I'm so excited about our new resource, My Healing Devotional. It is a meaningful gift for someone battling illness, and is a great tool for personal prayer ministry. It could even be used to help teach people how to more effectively pray for the sick.

In Luke 5, some men lowered their friend down through the roof of a house where Jesus was teaching. They knew that one touch from Jesus would make him well, so they were willing to take the risk and "hold the rope."

Will you be Karly's rope holder? To learn more about this way of praying, ask the Holy Spirit what that means for you.

Update on her health: We have been struggling through the last months with little success of getting her to feel better. The last three weeks have been hard, both physically and mentally. For me, watching her get sicker just brings back Kelsey's struggles in her life of sickness, trying to be normal by doing school and working and having a social life. The drug to make her better, made her sick....she went neutropenic and anemic. She had very little energy, trouble breathing, and her headaches got worse. The drug to keep the skin viruses under control probably contributed to this demise, so she cannot use it for now. Her counts have recovered, and hopefully the anemia also. She was given an IV dose of Iron on Tuesday. She left the doctors all her sputum, sinus gunk, blood, urine, and cultures. The phone call came yesterday that she is growing a lot of nasty gram negative pneumonia bacteria pretty much everywhere. This is good news in a sense because now we know what drug works on this and can hit it hard. It is administered through her line 3X/day, but won't be as bad as the last one. The major prayer request now is that she won't react to it and can complete this therapy and that she will feel more headaches, breathing trouble, gunky lungs and sinuses, and all bacteria will be eradicated. Okay, here we go! If she can finally feel better, there is hope that she may get to use the drug to combat the viruses. We will not get ahead of ourselves, but live one day at a time.

It was "interesting" that on the day we flew back to NIH where Kelsey's death is so real, I read in my devotional these words: "Giant steps are another matter altogether: leaping across chasms of semidarkness, scaling cliffs of uncertainty, trudging through the valley of the shadow of death. These feats require sheer concentration, as well as utter commitment to Me." This says what I deal with on a constant basis. I have to continually ask God to intervene in my thoughts and dreams, to give me hope when frustration is taking hold, to find laughter when things are heavy. The very weekend when we were battling heavy sickness with Karly, we had the joy of the boys coming home and her 80's party with friends. God is good all the time. This puts you up to speed on the happenings around home. Thank you for those who will become "rope holders". I like that term.



Wednesday, September 7, 2011


I was typing in the number of days today and was really amazed and mortified at the number of days Kelsey has been gone from us. Thankfully, it doesn't seem like that long. We reminisce so often and reflect everyday about her...maybe that is what makes her feel close to us. I still can see her at home in her room, the family room, and especially the kitchen. She loved eating and watching movies. Our trip to Alaska was our first family vacation without her, but she would have loved that trip when she was well. She was so adventurous. She would have climbed the mountains and glaciers and loved the food. Then there was the all too funny videos the boys put together. Her outrageous laugh would have permeated the camera. That is the way we want to remember her. I still have so many visual mind pictures of her sick in the hospital. Those pictures make me feel so helpless and sad, but I wouldn't have ever given up that time with her. I think what makes it harder for me than everyone else is all those painful memories of watching her suffer. The Lord knows what we all need, so trust is where it is at.

Karly started feeling a little better by Sunday, so she was able to finish an English Comp paper and the last of her Chemistry problems. Sara came Sunday last afternoon with games. Debbie and Deana came later in the evening. Deb and I left Sara and the girls to play games and get crazy which is what usually happens when Deana and Karly are together. We came back bearing ribs and chip. The next day went well also. Karly's nurse was able to get the all the meds finished by noon, so she could go out on pass. That was when we saw the movie "The Help", a fantastic movie. We squeezed dinner in also, then got back to the hospital to hook her up to Huebert. She has been so busy with Skyping her classes and doing homework, keeping her appointments and talking with the doctors and nurses. She is also working on some artwork to be displayed in the Booz Allen offices. Booz Allen is a big contributor to the Children's Inn. The artwork is a way to say thank you. Home health is being set up at this end to be ready to start at home Saturday evening when we fly home.

Alaska was very amazing. The beauty of the mountains, the animals in the wild, the blueness of the glacier water, the expanse of the wilderness were to be awed. We were blessed with friends who shared this time with us. All our experiences were amplified by the hospitality we found from Carmel's relatives and friends. Tyler and Trent made us laugh from there exploits with their pictures and videos. Highlights included our hike to the top of Reindeer Mountain, charter fishing for halibut, Kenai National Fjords seeing whales, otters, sea lions, bald eagles, a bear, and many large glaciers, the pipeline, riverboat tour, the shuttle back to Wonder Lake(11 hrs) in Denali National Park, fish hatchery in Valdez, watching bear feed on caribou and fish, hiking on Worthington Glacier, and eating the halibut the boys caught. Two weeks went very quickly, then back to the real world. Alaska is in the United States????Those who have been there know what I mean.

Tonight, Sara is returning with a home-cooked meal. We are so blessed! It really breaks up Karly's mundane meal order which is the same everyday, twice a day because of her allergies. I'm sure I will be cooking some specific requests when I get home. All those cravings multiply when you can't have them. Thanks for praying. I finally felt like I slept last night. With our crazy school schedule this year, it looks like I better get used to less sleeping hours. Prayer request: Karly has been getting many driving hours, but she is not very confident yet. Pray for confidence and opportunities that show her that she is ready to take the driving test. Also, that the meds will completely wipe out the bacteria and fungus, her energy will return, her head will be clearer, and the headaches will be gone. Pray that the new weekly injection will not make her sick or depressed and that it works against her progressive symptoms all in the name of Jesus!

Thanks for praying! Thanks for taking care of us!

Saturday, September 3, 2011


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 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.