SERVE week

Before I talk about SERVE, our doctor emailed last weekend to say that the protocol is going well. It has been returned for revisions which was expected. The revisions have been made, and it is going back for review. Our transplant doctor realistically thinks it will be September before we can begin the procedure. This is OK. It gives them more time to find a real match for the girls. I've been asked many times if a donor has been found. No. This is still the hope. In the event that a donor match isn't found, 4 cord bloods have been located at present. They cannot be purchased until we are ready to use them, so then it becomes a question of whether they will still be available. So that is still a very ongoing prayer: that the timing of the match, whether cord or donor, be available when it is time. Another prayer is that the girls' health hold out until that time. We are not worried or anxious, and still trust that He who knows us and our needs will fulfil them in His perfect timing. Karly's health held out very well over the SERVE week. She had an awesome time and loved "her" girls. She is able to run a bit, go up stairs, and she is just so cute. I love being able to chase her down the hallway, and she playfully runs away. Good therapy! We leave for NIH on Monday night; the schedule is set. We are looking for good numbers in blood and on the scale. We are looking for answers about her food allergies, her hearing loss, and her vision. Kelsey will be a patient for Dermatology Grand Rounds where doctors from around the world attend, discuss, and learn. I don't know if this will help us, but hopefully it will help others. As always, we thank everyone for their prayers, support, and love.
Love,
Mom

Week of June 6-12

The bathroom project is coming along. It is fully tiled now. Grouting tonight or sometime this weekend with the toilet going in this weekend also. Karly walked in today and said, "I'm getting excited about the bathroom." I'm glad she thinks so because it was for her to begin with. I can live with mold; she cannot. Still so many things to do, yet if I don't do them, all will survive. I was thinking yesterday about the kids schooling in the fall. Much of it is coming together thanks to the many who have stood by us, supported us, and will continue to stand by us. It makes me feel loved. I hope to accomplish the other "stuff" to be helpful to Tracy. You know, find the "stuff" that is somewhere in the black hole: the places I can't describe, but can just go to. Still in all of that I am reminded daily to not make my lists, and don't look into the future, and don't imagine what is next. I must keep looking to Him for my strength and in Him my hope is found....my lists to. We pray every night to only accomplish what He wants me to the next day. It seems a bit crazy that we do this, but it does work. We eat, we sleep, we do this and that, and at the end of the day we're done. We are at peace. Oh, did I tell you, Karly has stopped wearing her wig. She has this cute, fuzzy, soft layer of hair. I think she could be one of those thin, tall, New York models. Her physical therapy is going well. Her hearing is very noticeably worse in her right ear. Please keep praying for restoration of her hearing. Her fingernails are growing the chemo rings out. She went shopping for a few new shorts and tops for the summer to fit her now twiggy figure. What was supposed to be a quick trip turned into this shopping spree for all. Kelsey tells me that she will be throwing her multitude of t-shirts out and begin her now mature look with style. We'll see. We did have lots of laughs, but poor Trent had to grow some patience as we kept walking out to model for him. He really didn't care. Hey, he got some new tennis shoes. Tyler's 5-year old pair that he had been wearing had finally met its end. Counting down to our next trip on June 21. Pray for flight, room at Inn, doctors wisdom, health, healing, and safety to all.
Love,
Mom

Our flight was just late enough that we were able to attend church the morning of May 23rd. We quickly ate some rotisserie chicken which caused swelling with Kelsey and Karly, then off to the airport. As usual, it was a long day but no delays, and we arrived safely. We stayed at the Inn without any problems. On Monday the girls had their normal treatments. Karly was surprised by the singing of her nurses, a birthday balloon, and a cake(she couldn't eat). It was the thought that counted. We blessed our team with the cake. I hope they enjoyed it. Karly's counts are still recovering. She still hasn't gained any weight. She hasn't lost any either, so that is good news. She continues with Physical Therapy which is going well. One thing we need prayer for is her hearing. They tested it in April, and it was low in her right ear. She had been noticing it. As the next month progressed, she noticed a decrease in her hearing even more. She was tested again, and sure enough it was further decreased. She will be seeing an ENT and Opthamologist at her next visit. Kelsey continues to get worse. She is losing her nail beds to the virus. She had a sore biopsied in her nose in March and has been treating it since then to prevent it from creating a hole in her septum. The sore is relatively gone, but there is a hole clear through her septum. Trying to repair it is of no use right now, because it would not stay repaired. The good news is that her team of doctors are watching her closely. If anything new crops up, they are on it. Kelsey was able to meet with Physical and Occupational Therapy. The OT had some gadgets which could help her with her typing and writing. Like anything new, it is rather foreign and will take some getting used to. They will continue to meet with her to help her with daily tasks that require the use of her hands. We have not heard anything more about the protocol, but is in review and I'm confident that God's timing will prevail. We are still thinking July 5 would be a great day to start the process. Please join us in praying for God's timing, not ours. My time home is flying by and the things that needed to get done are still works in progress. Tracy and I had an awesome time visiting dear friends over Memorial Day weekend. We loved just spending time with each other. My mom, Karly, Konner, and Kassidy went to Lafayette to see cousins and ultimately put my dad's ashes in their resting spot in Morocco, IN. The girls were able to share more memories about their grandpa and were very glad they went. Trent and Kelsey went to the Homeschool Graduation and then open houses all weekend. Sounds like the Koch family was represented well that weekend. I shared about the bathroom last time and about how yucky it was. It was one of those things that just had to be done, no matter the cost. What was interesting was that I had felt like it needed to be gutted, but didn't really know how bad the situation was. Tracy called me from work and shared that same feeling. At that point of agreement, it was a GO! Then, the next day a check came in the mail to cover those expenses. Well, to cover us. With me not working much this 2010 year, the money will be tight, but has not become a source of worry or anxiety. The peace that passes all understanding is still at hand. We give God all the glory for that one.
Love,
Mom

4 weeks already?

Time home has been so great. I have loved all the special moments. Karly's hair has started to show a shadow. She's soft and fuzzy. We are all excited to see what it will look like. She is doing more with her friends which is so fun to watch. She turns 16 on our next trip to NIH. She's not interested in driving anytime soon. She appears to be doing well as far as her health is concerned. Her food allergies are still a problem. We are pursuing some testing in this area. I've accomplished many needed projects like cleaning out closets, drawers, boxes, and repainted and decorated the little girls' room. My most current project is the kid's bathroom. As I suspected, we have health issues hidden under walls and floors. What was going to be a superficial repainting and flooring is now to gut the room of the tub, shower walls, floor, and sink. Please pray that we can get this done before my next long stay at NIH. Karly started physical therapy here. She is working hard at rebuilding her strength, balance, and endurance before her transplant. Tracy and I successfully moved Tyler into his temporary room for the summer. He said, "He has slept like a baby since he moved in. Thanks mom!" Tracy and I will get to fly to Florida for the celebration of some friends' kids marriage. The kids of two very dear friends found love after many years, and we can't be more excited for them. Karly and Konner will be going with my mom to bury the ashes of their grandpa that same weekend. We sure are squashing a lot into our time. It seems like so many things need done that only I can get done. That overwhelming feeling creeps in, but thank God each day I look to Him for what to do. Each night I find myself really tired, but know that each day I accomplished what I was suppose to. We leave for NIH again this Sunday, Karly's 16th birthday. We were just reminiscing that last year we were flying to Barcelona, Spain on her birthday...a much better birthday present. God's timing was sure perfect on that one. I've had thoughts about our story that were put into very good words from Pastor Gregg. I hope that I can share these at a later time. In the mean time, he has had a series of sermons based on the Power of a Story. I would encourage you to go to www.unionchapel.com and find those stories. They are truly encouraging and God glorifying. Until later, God Bless!
Love,
Mom

Newst News

Quick trip to NIH last Sunday and returned on Tuesday. A friend of Tracy's asked if we could get it in writing that we would be back in 3 days. The flight and cab ride to the Children's Inn went without incident, but upon arrival to the Inn, they couldn't find our reservation and as it happened the Inn was full. The on-call social worker approved our first night off the NIH campus at a nearby hotel. Slightly a pain because we had to use a shuttle on a certain schedule and no food was provided like at the Inn. We remained calm and had to remind ourselves that this must be the right place for us on this trip. After we checked in, the rain held off long enough for us to walk to a restaurant which again turned out to be a blessing. It was a local favorite called the Tastee Diner. The manager provided a safe meal(no allergic ingredients) for the girls. The girls appointments went well on Monday. Our room at the hotel was approved another night. Appointments went well Tuesday. Flight home was interesting. Southwest Airlines hosted something called Honor Flight for WWII veterans. It was a full flight including around 70 wheelchairs. By the time we were allowed to pre-board, there was only one row of three seats for us. The entire plane was full of vets. Even with the unexpected, things went smoothly. I enjoyed talking with a couple families I had made a relationship with. We were updated about the progress of the transplant protocol. It passed the scientific review with revision and goes before the IRB(patient safety) around May 10. This one is the hardest to pass and takes the longest to get revised. Please lift this one up. Another disappointment was that Karly did not gain any weight.(didn't lose any either) We had a nutrition consult. She gave us some soluble products that get added to soft foods to add carbohydrates and fat. We will give this a try for the next 4 weeks. We need success in this area particularly before the transplant over the next couple of months. Lift this one up also. Karly has been very allergic to foods she typically could eat. She swelled the first three days home. She's had full body hives twice. Now, she is a little less adventurous when trying foods...she does not want to experience the swelling and hives anymore. Most of the foods we find that she likes she cannot eat anymore. We have been eating mostly fresh fruits, vegetables, and grilled meat. These foods are lo-cal and healthy, but not great for gaining weight. We usually ask Kelsey if she eats this food or that, then we know that Karly can eat it. We are learning. Well as always, we are not in control, and we love it that way. We still have amazing peace.
Love,
Mom

Since we've been home...

We've accomplished everything we had hoped. We celebrated Kassidy's 9th birthday family style with pin the tale on the donkey and other games. Then we ventured out to cosmic bowl. Karly was able to attend Disciple Now which is a weekend away with peers and leaders. This weekend she was able to attend her first prom. She looked beautiful, and Zach was quite handsome. Trent went also and says it was F-U-N! Karly, Kelsey, and I prepare today to leave for 3 days. The last time Karly and I left for three days we were gone for 5 months. I am having a hard time packing for 3 days. Kassidy is having a hard time preparing to say goodbye. It will take a while to put this in perspective. I totally trust that whatever will be will be, but it doesn't help me pack only 3 days worth of clothes. Kassidy was supposed to spend Saturday night with a friend, but last night she couldn't get to sleep. She had this uneasy feeling. She didn't want to say goodbye today, but wanted to see me off in the morning. It was easy to change that plan and put her at peace. I thought it was an interesting lesson for her to learn a little about peace and how we get there. Pray for a safe, without a hitch, and peaceful trip.
Love,
Mom

Quick Update

The Donor Drive at BSU went very well. We ran out of health forms just before the end. What a great problem to have. We still have health forms and swabs at Dr. Tom Rector's located at 1003 W. McGalliard, Muncie, IN 47303. Please come by if you still want to swab. Karly went to Disciple Now over the weekend. She did well and reconnected with her youth group. Her doctors were pleased with her first blood draw results. Tyler came home this weekend. It is always so awesome to have the whole family together. The sermon today can be found at www.unionchapel.com
The series is based on, "There is power in the story." I think that everyone can relate on some level to these stories. I particularly have been asking people why some deal with crisis better than others. I think the message today explained it very well. Paraphrased by me, but go to sermon: Antecedent:the stuff that takes place in your life before
B:
C:the consequence no matter good or bad
The "B" is what we have been living:BELIEF and HOPE in JESUS.
The "B" makes living the after with the peace the passes all understanding.
I hope that our light is shining before men and that God will use our story to touch the lives of others and bring glory to Himself.
Love,
Mom