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