After Surgery

Karly had tubes placed in both ears and is doing very well. This should help her hear better. She was placed on another antibiotic for a sinus/lung infection on Tuesday. Hopefully this will help with her goopy cough. Her liver test is a bit off, but is being closely watched. All in all she's in a good place. Kelsey is always a stumper. The steroid usage is an issue. It may be the reason she has small cataracts in both eyes. Even before we found this out, they had been trying to figure out how to decrease her dosage. She will be experimenting with a dosage change over the next month. We should know something about the transplant at our next visit & meet with our transplant doctor. The NIH is going to hold a Donor Drive on behalf of the girls on our next visit. Please pray for an outstandingly good turn out. We still have our hopes on an actual match.

Karly and I attended an AFCEA breakfast in June where she spoke on behalf of the Children's Inn. She and the founder of the Inn accepted the $530,000 check presented by AFCEA. We just heard that the AFCEA group was touched and awed by her speech. The Inn recorded a video interview of her(and Kelsey and I) expressing our gratitude for having a place to go to while undergoing treatments, what the Inn means to us, and how it has evolved. They also recorded a public service announcement that expresses her thankfulness for the Inn and encourages others to give. She's becoming quite the speaker. After we landed in Indiana, the doctor called to say that one of Karly's cultures was growing a different bacteria than she had antibiotics for. As always, they are so on top of her every need. Karly & Konner will be attending volleyball camp for three days this week. I know it will be fun for her to be with friends and playing the sport she loves. Please pray for her endurance and strength. Please pray for Kelsey to be able to focus on at least one of her BSU classes over the next month. That's the update for now. God's glory is ever present...look for it.
Love,
Mom

Going well!

We have put Ocean City, the fun week with my sister and family, and the Augustin Family reunion behind us. We are working on the refueling today. Karly finally hit a wall yesterday. She opted out of the activities to nap and rest. I'm glad that she can know her body and make that mature decision. She has been coughing up more junk than usual. Her doctor will check it out this week. She is up to 111 pounds. What young girl wants her weight announced to the world, so at some point, I will have to be more vague. She gets so many complements about how cute her hair is. She is so able to pull it off. I hope that all the stages her hair goes through will be equally as cute. Kelsey has had a bad couple of weeks. With the antibiotic finally working, we hope to see her with more energy. Yet with this particular antibiotic, she gets a great deal of body pain so now she has to cope with that. Trent has only slept in his bed 1 night in the last 4 weeks. I think everyone is looking forward to their own beds. Vacation is awesome, but it is always awesome to be home together. The family had tubes of blood drawn today(not Tyler because he is already back at school working). We are hoping to find out if any of the other children are carriers of this Dock 8 disease. If they are, it will lead to more studies. We watched Kelsey's T cells in action today on the computer. We enjoy seeing and hearing about the progress the laboratory doctors are making. Konner and Kassidy are half way through the Sibling Day at NIH. This morning the girls visited the NIH Laboratory of Medicine and Mock MRI scanner. This afternoon they participate in art and recreational therapy. I hope the day's activities takes Kassidy's mind off her blood draw this morning. She REALLY doesn't like it, but did well. I hope that she is not a carrier, because did I mention, she REALLY doesn't like it. We have one last day this week together as a family, with all of my siblings and their families, and my mom. I think the plan is for a huge Apples to Apples game. As we live each day, it is a day the Lord has made. Let us rejoice in it!
Love,
Mom

Greetings from the Koch Family

Kelsey, Karly, and I were at NIH from Monday night, July 21 to Thursday, July 24. The girls were refueled on Tuesday with IVIG. Wednesday and Thursday were Ophthalmology, ENT, PT, OT, and Dermatology Grand Rounds. Basically, Karly is doing very well. She could use glasses for driving, but she's not driving yet although she got her permit. The doctor believes the double vision will not resolve, but said that she compensates well. She gained 4 pounds. Her physical therapist thinks she is on the right path. Her balance will continue to improve as she tries to do her normal activities...volleyball and ballet. Her hearing in her right ear will be investigated on July 14. If it is just fluid, she is scheduled for surgery to put tubes in on Thursday after an MRI. We flew home on Thursday. We went to Konner and Kassidy's ballet recital Friday night. Tracy and I drove to Purdue on Saturday to pick up Trent from this week at the Purdue Research Park Entrepreneurship Academy. We attended the breakfast. We were surprised when Trent and team won first place. Tyler was able to fix his Explorer so drove home to go with us to Maryland for our second respite week at Ocean City, MD. We will visit my sister and her family for a week before our family reunion at Solomon's Island, MD. On July 8th, Karly gets her CT scans while celebrating the 3 month period of no cancer. Kelsey proves to be no better, and in fact, has another infection in her lungs. She is starting another antibiotic to get the resolved. Our doctor is so good. She actually called us while we were on the road to Ocean City to find out where to mail the med. We have thoroughly enjoyed our week at The House By The Sea. We had an awesome time, ate amazing food, and made great memories. Another highlight we are looking forward to is the Augustin Family Reunion. This will be an awesome time of catching up with each other, and celebrating our lives and the legacy of the Augustin Family. The girls return to NIH to get more IVIG on July 13 while Konner and Kassidy participate in Sibling Day at NIH. After all that, Tracy and crew will return home while Kelsey, Karly, and I stay until Friday. I hope you kept up with all of that. Who would think that day after day so many things keep happening. We are loved. We are Blessed. We are amazed. We are enjoying each day itself. May you find these things in your lives.
Love,
Mom

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