Day 105-DANCING WITH THE LORD

Just an update on Karly. She has been experiencing some extreme tiredness and headaches for over 2 months. At first, we didn't think much of it. She always has sinusitis, so she was put on an extra antibiotic and increased the one she is always on to an adult dose. Both symptoms have persisted regardless of these changes. I don't know how to exactly described how we were feeling about this, but let's just say that after 2 months, my mind wouldn't stay away from thinking "cancer". We spoke about it briefly out loud to one another. I reassured her that if the symptoms got worse, we knew exactly what we would do. Fortunately the symptoms have not worsened. They have remained constant. After our visit to NIH 3 weeks ago, they planned on tapping her Ommaya and getting a brain MRI at this visit. The results of both of these things have given us great relief. First, the fluid was clear and has revealed no lymphoma. The brain MRI looks negative for lymphoma. Plus, her symptoms were not getting worse. Her blood work looks good. These are all things we are rejoicing about! It was very hard to keep our minds from thinking "cancer", but even in the midst of this, I kept telling myself to not worry, not go beyond this day, it isn't anything until it is something. I kept my eyes on Jesus. It is just another reminder that she is His, and He has a plan for her. She does have some unusual findings...the pressure in her Ommaya is elevated, she has some trace swelling of her optic nerves, she really is so tired, and her headaches continue. Neurology has seen her and has given them some additional causes to pursue, & she is positive for a virus which is unknown to most people. These things could have explanations, but at this point everyone is being careful. I so appreciate their diligence and thoughtfulness in caring for her. It has been a very busy two days. We are leaving a day late, but we are leaving. Yeah!

I was reminded again yesterday to hold my plans tentatively and to concentrate on my task at hand. When we are at NIH, Karly is my task. I have to thank everyone who was obedient to the Holy Spirit. Today was a difficult day for her(and me). She was a trooper. AND I stand amazed every time God directs His people to pray. WOW! What an awesome God we have!
Love,
Mom

Day 100-DANCING WITH THE LORD

Now, it’s time for a brother blog post. By now most people have stopped reading the blog I’m sure. So, it’s safe to let me write something…here goes nothing. I’m the twin, the pea in the pod, the sibling pair, partner in crime, or whatever you want to call me. The Koch kids were all born with a sibling pair based on age and the gaps between the years we were born. Kelsey and I were quite the match-up. We were different in almost every way possible. I could eat the foods she couldn’t, do the math, and drive her insane. I don’t know if anyone was better than me at driving her crazy. We loved each other completely though, as a true brother and sister should. Love was something we talked about all the time. She always told me that Alex was the “love of her life,” and she would continue to give me advice about love all the time. She was really good at loving something fully. She knew what was up. One of the last things I remember her telling me in the hospital was to find me a woman that would love me for who I am. She said I was a pretty special guy. Always positive but then she would smash me down again in typical Kelsey fashion. She went on to say that it was going to be very difficult to find someone that could love me because I was so, “special.” J I was told that I should love God like crazy and people like crazy too, so that is my super-secret mission from her.

We had our own traditions with each other. We did everything, like hiding the lucky charms in my toy dump trucks and holding our secret meetings at 11:11pm to go behind the parents back, and make that 11:11pm wish. She could talk me into anything and everything because I was pretty gullible. If I didn’t do something she wanted, I would get that whining “tyler” thing she always did or say, “you bugges me.” While I reminisce I tend to turn to prayer.

Last Thursday, while in a time of prayer, I was reminded of a particular moment in time that we had together. We used to watch this old cartoon version of the Pilgrim’s Progress on VHS at random times throughout this one year when we were just itty bitty. It was just a normal, nothing out of the ordinary day when we were watching it together. Being the old wiser sister she was, after the movie she told me this, “Tyler, this is how we are going to live our lives.” I trusted her, and as little tykes we understood that our time was limited here on this earth. We made the decision to live as “Christian” did, for Jesus. She pushed me and was my encourager in this, and I pushed her in the same way. Sometimes in life we want to throw in the towel individually and live differently than Jesus would have us live, but we wouldn’t let that happen to each other. Kelsey had it harder than, not all, but most people I dare say. I mean, I will, and we did make mistakes and slip up, but never abandoned the goal. We talked and grew up together very close. By very close I am referring to the fact that we were homeschooled and spent every day, all day with each other. It made it very easy to get on ones nerves, but we made up very quickly and every time this happened. Forgiveness is a good tool to have. We were able to work with each other to sharpen that skill, quite often sometimes.

One of the things we liked to talk about was what we were going to do when we got older. Kelsey always wanted to help out in the medical field in some way, and she told me this for her whole life. She was “called to it” she told me. Boy did that calling ever come true! She made a massive contribution in that area of her life.

Sometimes we are scared in life but God has “got this” which is another popular Kelsey phrase. We can rest in him. The burden on our backs is too much to carry, but God always did and will always get us through. Jesus has taken the sting out of death. I do miss her quite a lot, but I know that she is living with the big man for eternity. I will see her again one day.

~Tyler Koch

Day 97-DANCING WITH THE LORD

It has been 3 weeks since I've last checked in. Karly and I went to NIH over April 24-26. She had procedures done; some she didn't like, but she handled them well as usual. The big thing for that week was her "Cinderella for a Day" activities. Friday was busy with mani, pedi, hair, make-up, jewelry pick-up, pictures, limo ride to dinner, prom, and after prom. Her dreams came true with all that her fairy godmother, Tina, provided. The next night was a fancy banquet at the country club, and again she had to prepare but this time on her own. She was blessed, and so were we. This past weekend was Mother's Day. I guess I didn't focus on that. I have been asked if this day bothered me. I guess it didn't. Really it isn't unlike any day. I think of Kelsey everyday. Sometimes I'm just trying to figure out what went wrong. Not because I thought we could have a different outcome, sometimes I think that, but mostly because I hope that we have learned many things that will help others. My mind searches for those answers. I know not to focus on the past or the future. I see many things changing in Karly, but I also have hope in the Lord. I see the doctors working very diligently on making sure they don't miss anything. For this I am thankful. Tyler made it home the past two weekends which we love having everyone all together. This next weekend, Karly and I travel back to NIH, but we get to have a bit of fun seeing Deana in her play and seeing all the Gilley's. The girls spend most of their time laughing and creating random silliness. One prayer request that I can specifically think of is that Karly has been having almost daily headaches for about 5 weeks now....many causes to think of, but don't want to miss the "one". Trusting that the reason will be found. Hoping that it is nothing out of the norm....sinus...season...allergies. She has been extremely tired also....is it related? These are a few of the questions the doctors are looking into. This next visit may rule out or reveal the answer. So, how are we doing? I think we are doing well. What does well mean? It means we are not depressed, we are not sleeping away our days, we are functioning, processing, asking questions, seeking truth and realness in our relationships. People continue to help us in this process. It helps to see and hear about how Kelsey changed your lives. It encourages us. It puts a smile on our faces. Thank you for your support, your cards, your words.
Love,
Mom

Day 76-DANCING WITH THE LORD

One of the things on my mind is seeing Kelsey again. I long for it, so I can hold her, climb into bed with her, and just finish conversations we've had. I had a dream 3 nights ago, and she was in it. I cannot say anything in particular about it except it was peaceful and fulfilling. I wish it would come again. Another thing on my mind is Karly. We have told her countless times that she is not Kelsey. Her outcome is not based on Kelsey's. This is still true. During her appointment, the doctors found the first patch of virus(like Kelsey's) on her skin. I know that God is watching over us. Even the fact that the doctor found this patch was certainly a God moment. It just came to her to check Karly out more thoroughly. I know this is one thing they have learned from studying Kelsey and other Dock 8 patients. Each visit, the dermatologist will be cutting off a bit of the virus. This came as a shock to her and me also. It became a realization that they are more alike than we think. Kelsey didn't outwardly show much of the disease until she was in college. She may have had some patches that I was unaware of before that which is another thing I would ask her. Anyway, Karly would have certainly been talking with Kelsey about this. This was one of the things that made the visit tough. The person who knew best about this type of thing was gone. She will learn how to deal with this in a different way. It will take time. Karly's breathing was the worst it has been in a long while. Fortunately, the chest CT looked good. She had all the cancer CT's as well, and they all looked good. Her WBC count was a bit low, but it could just mean she has a virus(which she does). Everything else was looking good. Her sinuses were gunky, so she is taking an additional antibiotic. We will continue to travel to NIH every 3 weeks for treatment. Let me tell you that those 3 weeks go by very quickly. Anyway, another things I wanted to share about was how God has been blessing us. Thanks to some of my Facebook friends who posted The Star Press article about Divine Designs holding an essay contest to be Cinderella for a Day. I encouraged Karly to share her story. We know there is power in a story. She shared about how her first prom was right after she came home from 5 months of cancer treatments...no hair, no coordination, skinny as a rail, weak, not quite all a girl dreams about for her first prom. She shared about this prom being on the heals of her sister's death. Anyway, there we were at NIH, just had a tough day at the hospital, at a grocery store shopping for Karly food when she gets a phone call. It was Tina from Divine Designs telling her that she won the contest. That was very exciting, amazing, and just like God. The next day she had another hard day with the cutting off of the virus. She did an amazing job. Then on Saturday was the Gala. So the tough stuff was sandwiched with amazing experiences and good news. God is good all the time. Even if we never had any good news, we can still say God is good. But thank you Jesus, that you are supplying those smiling times. Being the contest winner became more real to Karly when we went to Saturdays Bridal and Prom shop last week, enjoyed trying on those beautiful gowns, and found the one that makes your mouth drop. When she tried on "the" dress, she felt like Cinderella. We finally met Tina this week and many of her co-workers. She is truly going to make this a prom Karly will never forget. I hope to share more often some more of the truths we live, adversities we face, the new journey God is preparing for us, and of course His never-ending love for us and you. Thank you for praying for us. Oh yes, by the way, there was one 24-hour period that 3 friends shared with me how God had them pray for me. I really don't know why, as is the norm for me these days, but I do know that God is leading our path. Tracy shared with me the same type of story. He was having a bad missing Kelsey week, and one of God's people shared with him the same thing...to pray for him. We don't know much, but we do know God is faithful, loving, and preparing us for His kingdom. We are all really close to Heaven whether we choose to believe that or not. Seek Him and you will find Him.
Love,
Mom

Day 61-DANCING WITH THE LORD

Yesterday marked 2 months since Kelsey went to "Dance with Jesus". It seemed fitting that Karly and I each wore "Kelsey belongings" to the Gala yesterday. I wore Kelsey's prom tiara. Karly wore her prom dress and earrings. She is in everything we do, wherever we are. Karly commented on facebook how empty the halls are here without her "partner in crime". It certainly is different. It impacted her a bit harder this visit than last. Even though Karly looks great, the disease is progressing, and this became more real at this visit. So it starts some tougher things than she may be used too. Don't get me wrong. She is extremely tough. She was Kelsey's hero as she battled her Stage 4 Burkitt's Lymphoma. Nobody wants to endure pain and doing the unknown, so it makes it tougher for her to relive those feelings. She doesn't have her Kelsey mentor around to soften the blow and get the best advice possible. That certainly seems long ago; yet it is not forgotten. It was an amazing journey for our family. One that has changed us forever. God has been faithful throughout. We've had some emotional days. We have met some new faces that hopefully I will get to share about in the future as things progress in that relationship. The Gala was a time of celebrating the supporters of the Inn, what their support does for the kids that stay in the Inn, and it raised over $675,000 this year! She did an awesome job representing the Inn kids. There was a special performance by one of the longest going Inn kids(she's 24) and her boyfriend she met at NIH with the same disease. As a result of their disease, singing and note holding became part of her therapy. For him, it was the saxophone. So, together they performed " To Dream the Impossible Dream". They did an outstanding job. It brought me to tears on many levels. We dreamed of Kelsey's life on earth, but never as being impossible. It was awesome to see them living in spite of their illness. It was special to be at the Gala with pieces of Kelsey everywhere. It was 2 months since her death on earth, but living in God's presence. It was amazing to see Karly shine that night. Anyway, the night was wonderfully memorable. The Vice Presidential Suite was donated to us for the evening, so that made us feel pretty special. The evening was more special when cousin Deana and Debbie got to join us for dinner and the rest of the evening. Deana and Karly are always so spunky and have so much fun together. Dancing was a highlight for us, but I think everyone enjoyed it as much as them just by watching them together. As our time here is almost over this visit, there will be more reflection, but as always we have been supported, encouraged, and loved. Our hearts remain thankful and grateful and loving back to all of you. God Bless!
Love,
Mom

Day 45-DANCING WITH THE LORD

Can it really be 45 days that Kelsey has been gone? Everyday feels weird in many ways...mostly that she is not part of the happenings everyday. I took the girls to Ritter's. This was something she always enjoyed. I was packing and remembering the mornings getting ready to care for her...picking out sleeveless clothes for the hot temp of her room...putting on the jewelry she loved. I wish that I could still care for her...but not in the hospital...not in that way. I wouldn't want her suffering through that anymore. There is no way I would want to forget her, but the reality of her not here is deep. It seems harder because she lived with us. She was part of everything here. I wish I had more of an understanding of what God is up to. I do see many things and stay open to what He is doing. I trust that whatever He is doing, it will be glorious!

As for Karly, we are not getting into transplant mode anytime soon. That being said, things change, and we are not opposed to it when it becomes necessary. One relief is that a couple more Dock 8 transplants will be happening sometime this year. Two more in Germany will also be occurring. We will be watching these outcomes closely. Again, no two people are the same or have exactly the same symptoms or will react the same. Just getting the protocol tweaked will be important. Something useful is always learned that will help the next person. Karly and I continue to travel to NIH every 3 weeks for her treatments and follow-up. Everyone is so supportive.

Thank you everyone who has fed us, contributed financially, helped out, and prayed for us. I have been to work twice. It has gone smoothly, and my first paycheck has showed up. We are still investigating how best to honor Kelsey. I will report on this when we finally get it together.

The work on the basement is progressing. It doesn't smell anymore, and it is dry. Painting will commence after spring break, then carpeting and trim in the family room. Then starting the bathroom after that. I have been in a cleaning mode some days, so I must confess that when Trent went to Boilermaker, I cleaned his room. He will either thank me or be mad at me. A boy with so many electronic parts may not appreciate the organization from his mom, but rest assured I know where everything is. I haven't decided whether to let him discover this when he gets home or give him a heads up tomorrow. It will be amusing to me either way...maybe it shouldn't be. He will get the response I get, " I love you Trenty!" The Boilermaker for those who may be going "What's that?" is the regional competition for FIRST Robotics. Team 1720 has been working on their bot since January. The bot was shipped in Feb. and they finally got to uncrate it on Thursday, repair and update anything else they needed to do. Today & tomorrow morning are the seed matches with the hopes that they seed high enough to get picked for the finals that begin at 1:00 tomorrow. This is Trent's senior year. He is driving the bot again this year. It takes place in the Armory on the Purdue University campus. Tyler will be joining us there tomorrow to cheer on Team 1720. FUN! Praying for safety for all as they travel!
Love,
Mom

Day 34-DANCING WITH THE LORD

So life moves on...we had an amazing Memorial Service for Kelsey at the NIH one week ago. We were able to give our perspectives on her life and death. Many doctors and nurses shared their perspectives of Kelsey's impact on science and their own lives. We were encouraged by their testimonies. My Uncle Arthur and Cousin Carol with son Michael attended as well. When I see all those at NIH impacted by Kelsey, Karly, and our family, I am encouraged that God is not done. I am challenged to find deeper insight and more revelations of Him through allowing myself to be refined, bent, and conformed for His purposes. Only through the Holy Spirit will I find the peace that passes all understanding. It is a daily, conscious effort to guard my heart and mind from doubt. Oh sure, it comes. Even after I entertain it, the result is the same. It always comes back to "it was her appointed time". You know that my mind takes me back to those last hours when we knew that she was going and that only God could take her or leave her with us. It was then that we had the courage in that hour to find rest in the Lord and to praise Him in that circumstance. In my mind, I tried to place blame and anger, but it was not there. In my heart, I knew this was God's plan. There was no man in control of her life. Kelsey lived her life like she wanted to...full of God with a mission.

We are doing well. Tyler is currently in Panama City, Florida with the Wabash Christian Men on a Campus Crusade for Christ evangelical trip. He just finished the classes from his fall semester plus doing the spring semester, and he so needed a break. He has been working so hard to catch up. Trent has been accepted to Wabash College in the Fall, so we are all thrilled about this. Konner said that half of her dream came true....Trent goes to college and she gets his room. I don't think she will "get his room just yet." He is still in the Robotics season. The 'bot is in Lafayette, so the team will be traveling there for the Boilermaker later this month. Karly is being sufficiently spoiled by Zach. He surprised her with a private dinner, in a private location, with 2 of her girlfriends cooking a Karly-friendly meal that was extra specially yummy. Then, he bought her a new hamster....named Juniper Parfait, but called Parfait. She is cute and friendly and makes Karly smile. Way to go Zach! She won second place in the AFCEA art contest at the Children's Inn. She has a new XBox 360 which makes the boys happy. We are awaiting word to know if she and I will attend the Gala in Washington D.C. in April. This would be an awesome event for her and I to experience together plus she is quite the speaker and could do some publicity for the Inn. Did I mention that she gets to go to Puerto Rico with Zach and family or that she is spoiled? Konner and Kassidy are doing regularly scheduled school, dance, and coops. Tracy is preparing for a Spring concert at school. I am starting work this week. After we got water in the basement last week while we were gone, the clean-up for 1 room is mostly done. Cutting out carpet and baseboards and drywall still in the works. Unsure when we should really try to get it repaired with all the rain we are still getting??? Just walking daily in it all. Our thanks go out to all of you who have supported us daily. Remaining thankful in one's heart is so important in your everyday walkings. "In every thing give thanks: for this is the will of God in Christ Jesus concerning you." 1 Thessalonians 5:18 These daily rejoicings release Heaven's treasures and delight our Father. I pray you all find daily praises and rejoicing!
Love,
Mom