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