Day 284-DANCING WITH THE LORD

It's been 6 weeks since I last posted. Karly's life has been a roller coaster, so I've not known what to post about her health. Sometimes the reality of this disease just escapes me..., we believe that God will heal her so we are waiting on HIM and HIS perfect timing. It is still just moment by moment. She was on the IV drug for a month. Her snot and cough were at last improved, but just before they took her off the drug, the cough came back. The last 3 weeks she's been off the 2 IV drugs and for the last 3 weeks she has been worsening. Her band-like headache has gotten worse. She got an additional headache in the occipital region on the right side back of her head that is quite painful. Between these two headaches, her days and sleeping have not gone very well. The face swelling and right blood shot eye is back. Her IgE and Eosinophils are extremely elevated. She fell down the stairs last Saturday, then again on Tuesday. The second fall really shook her up. She has never fallen down the stairs. The first fall we didn't think much of it. The second fall was alarming. She immediately thought the worst and was so worried. Really, everything pertaining to her health has been worse. After talking with NIH, they felt that we shouldn't wait until the 17th to come, so we made phone calls to fill in the gaps to our schedule(a big thanks to everyone who is helping out) and hopped on a plane to Maryland. She had her Ommaya tapped on Thursday morning, a brain MRI, and a neurological exam. Cultures of her eye and sputum were taken. So far, the results are negative. We are in a waiting mode for the flow cytometry and viral results. We are not yielding answers to making her feel better....but we are not done yet. We see pain management and have an endoscopy on Monday. Dermatology and ENT are Tuesday. Please continue asking the Holy Spirit for healing, peace, and wisdom.

On a neat note, Karly was asked in August to make a piece of art 20"x 20" as a donation to Booz Allen, a leading provider of management and technology consulting services to the US government in defense, intelligence, and civil markets as a thank you for their support of the Children's Inn. She made a small canvas 11" x 11"depicting Indiana. Her large piece was based on an original poem she wrote just for Booz Allen.

"Can I be like a tree? bringing shade to everyone.
Can I be like a bird? and bring song here upon.
Can I be a button? and keep things together.
Can I be a caterpillar? and change during the weather.
It doesn't matter what I am, Because I am made by God.
But I think I'll be myself, Because anything else would be quite odd."

It is really cool. The timing of it all was perfect. When she was inpatient in September, she was able to see the art therapist in her room. Through their brain-storming efforts, Karly was able to make her vision a reality. We would have loved to keep it ourselves, so I don't know how artists let their pieces go. She will just have to make another. The piece was photographed and a print is being made.

NIH had a special service where they memorialize the patients they lost this year. We sent 5 pictures of Kelsey. Going through all her photos is hard. I look at all those times in her life when she was happy and experiencing relationship and yearn that we had more. Then, in the end, I know that we all will face eternity, and she is laughing and dancing in Heaven. She fulfilled what God had planned for her. She made a difference and is still making a difference. I am thankful for the truth that we will see her again.

"He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end." Ecclesiastes 3:11
"In bringing many sons to glory, it was fitting that God, for whom and through whom everything exists, should make the author of their salvation perfect through suffering." Hebrews 2:10

Love,
Mom

Day 241- DANCING WITH THE LORD

Time is flying by. Time is so precious. Where does it go? Why does it go by so quickly? What ultimately is our goal for the time we have on earth? I think we know what our purpose is, but what about "the time"? I was challenged a few weeks ago about how we look at healing. One of the thoughts that stayed with me was how easily we will spend 3-4 hours watching a football game, but how hard it is for us to spend 3-4 hours praying for healing. I have begun "My Healing Devotional" by Dr. Terry Teykl with great expectations on how to use my time in prayer more wisely.
"My Healing Devotional: 40 Days to Pray for Wholeness" by Terry Teykl

It has always been my conviction that we could do a better job praying for the sick. That's why I'm so excited about our new resource, My Healing Devotional. It is a meaningful gift for someone battling illness, and is a great tool for personal prayer ministry. It could even be used to help teach people how to more effectively pray for the sick.

In Luke 5, some men lowered their friend down through the roof of a house where Jesus was teaching. They knew that one touch from Jesus would make him well, so they were willing to take the risk and "hold the rope."

Will you be Karly's rope holder? To learn more about this way of praying, ask the Holy Spirit what that means for you.

Update on her health: We have been struggling through the last months with little success of getting her to feel better. The last three weeks have been hard, both physically and mentally. For me, watching her get sicker just brings back Kelsey's struggles in her life of sickness, trying to be normal by doing school and working and having a social life. The drug to make her better, made her sick....she went neutropenic and anemic. She had very little energy, trouble breathing, and her headaches got worse. The drug to keep the skin viruses under control probably contributed to this demise, so she cannot use it for now. Her counts have recovered, and hopefully the anemia also. She was given an IV dose of Iron on Tuesday. She left the doctors all her sputum, sinus gunk, blood, urine, and cultures. The phone call came yesterday that she is growing a lot of nasty gram negative pneumonia bacteria pretty much everywhere. This is good news in a sense because now we know what drug works on this and can hit it hard. It is administered through her line 3X/day, but won't be as bad as the last one. The major prayer request now is that she won't react to it and can complete this therapy and that she will feel healthy...no more headaches, breathing trouble, gunky lungs and sinuses, and all bacteria will be eradicated. Okay, here we go! If she can finally feel better, there is hope that she may get to use the drug to combat the viruses. We will not get ahead of ourselves, but live one day at a time.

It was "interesting" that on the day we flew back to NIH where Kelsey's death is so real, I read in my devotional these words: "Giant steps are another matter altogether: leaping across chasms of semidarkness, scaling cliffs of uncertainty, trudging through the valley of the shadow of death. These feats require sheer concentration, as well as utter commitment to Me." This says what I deal with on a constant basis. I have to continually ask God to intervene in my thoughts and dreams, to give me hope when frustration is taking hold, to find laughter when things are heavy. The very weekend when we were battling heavy sickness with Karly, we had the joy of the boys coming home and her 80's party with friends. God is good all the time. This puts you up to speed on the happenings around home. Thank you for those who will become "rope holders". I like that term.

Love,

Mom

Day 218-DANCING WITH THE LORD

I was typing in the number of days today and was really amazed and mortified at the number of days Kelsey has been gone from us. Thankfully, it doesn't seem like that long. We reminisce so often and reflect everyday about her...maybe that is what makes her feel close to us. I still can see her at home in her room, the family room, and especially the kitchen. She loved eating and watching movies. Our trip to Alaska was our first family vacation without her, but she would have loved that trip when she was well. She was so adventurous. She would have climbed the mountains and glaciers and loved the food. Then there was the all too funny videos the boys put together. Her outrageous laugh would have permeated the camera. That is the way we want to remember her. I still have so many visual mind pictures of her sick in the hospital. Those pictures make me feel so helpless and sad, but I wouldn't have ever given up that time with her. I think what makes it harder for me than everyone else is all those painful memories of watching her suffer. The Lord knows what we all need, so trust is where it is at.

Karly started feeling a little better by Sunday, so she was able to finish an English Comp paper and the last of her Chemistry problems. Sara came Sunday last afternoon with games. Debbie and Deana came later in the evening. Deb and I left Sara and the girls to play games and get crazy which is what usually happens when Deana and Karly are together. We came back bearing ribs and chip. The next day went well also. Karly's nurse was able to get the all the meds finished by noon, so she could go out on pass. That was when we saw the movie "The Help", a fantastic movie. We squeezed dinner in also, then got back to the hospital to hook her up to Huebert. She has been so busy with Skyping her classes and doing homework, keeping her appointments and talking with the doctors and nurses. She is also working on some artwork to be displayed in the Booz Allen offices. Booz Allen is a big contributor to the Children's Inn. The artwork is a way to say thank you. Home health is being set up at this end to be ready to start at home Saturday evening when we fly home.

Alaska was very amazing. The beauty of the mountains, the animals in the wild, the blueness of the glacier water, the expanse of the wilderness were to be awed. We were blessed with friends who shared this time with us. All our experiences were amplified by the hospitality we found from Carmel's relatives and friends. Tyler and Trent made us laugh from there exploits with their pictures and videos. Highlights included our hike to the top of Reindeer Mountain, charter fishing for halibut, Kenai National Fjords seeing whales, otters, sea lions, bald eagles, a bear, and many large glaciers, the pipeline, riverboat tour, the shuttle back to Wonder Lake(11 hrs) in Denali National Park, fish hatchery in Valdez, watching bear feed on caribou and fish, hiking on Worthington Glacier, and eating the halibut the boys caught. Two weeks went very quickly, then back to the real world. Alaska is in the United States????Those who have been there know what I mean.

Tonight, Sara is returning with a home-cooked meal. We are so blessed! It really breaks up Karly's mundane meal order which is the same everyday, twice a day because of her allergies. I'm sure I will be cooking some specific requests when I get home. All those cravings multiply when you can't have them. Thanks for praying. I finally felt like I slept last night. With our crazy school schedule this year, it looks like I better get used to less sleeping hours. Prayer request: Karly has been getting many driving hours, but she is not very confident yet. Pray for confidence and opportunities that show her that she is ready to take the driving test. Also, that the meds will completely wipe out the bacteria and fungus, her energy will return, her head will be clearer, and the headaches will be gone. Pray that the new weekly injection will not make her sick or depressed and that it works against her progressive symptoms all in the name of Jesus!

Thanks for praying! Thanks for taking care of us!
Love,
Mom

Day 214-DANCING WITH THE LORD

Karly and I have been at NIH since Thursday night. Things haven't gone as smoothly as we would have hoped, but I am figuring that everything is to the "Glory of the Lord". Today things are starting to settle in. I'm in a new room, hopefully quieter. Her drugs are finally going more smoothly without reactions. I just looked over at her, and she is smiling this very peaceful, small smile. One that seems like you are content with yourself. I asked her why she was smiling. She just giggled. I asked again, giggling again. Finally out of her mouth comes, "Have you met Huebert?" I say, "Nooo. Should I have?" She says, "Meet Huebert, then points to her IV pole." She is so funny. Huebert is by her side all day long, but attached for ~7 hours of the day. He is her friend. She has been working on an English paper while taking 50mg of benadryl and 25mg of Zyrtec. I'm not sure why she is not sleeping. She has to take 150mg of benadryl in a 24hr. period. She is amazing us that she is awake at all.

Good story a couple of weeks ago. I drove over to Crawfordsville to settle the boys in on campus. I thought that Trent would want some help just organizing his piles of stuff, after all Tyler did. No, Trent wanted to do it all. Okay, no problem. But Tyler, on the other hand, still likes mom to settle him in. I love it. It seems to get easier every year. This should be his last year on campus as a college boy. I just feel good about leaving him "settled". This is how I want to feel when I leave Karly in the hospital at night "settled". Anyway, I haven't got to the good part yet. I was praying for Trent on my way home..maybe partly because I didn't get to settle him in, or just because school has been hard for him with all our family issues taking away his focus. I was zoned "in my prayers", but when I finished and "zoned back on the highway", there was a beautiful rainbow. I asked God if this was an answer to my prayers that Trent would be okay. I knew my answer, and I was at peace. Isn't that awesome?!

I want to share a story Karly wrote when she was released from the hospital after cancer, but before we came home in April 2010. She has re-written it again this year with more clarity and dedicated to Kelsey "Enigma" Jo Koch. I want everyone to know how important the body of Christ is just in case you haven't gotten it yet. You are all important to our survival.
THE “ENIGMA” SURVIVES

The alarm was set the night before. The next morning it began to play music. As I peeked open my eyes, I sat up and stared at the wall. Glancing around, there were two alarm clocks, two closets, and two of everything. While my eyes were struggling to focus, I began to slowly crawl out of bed. Looking down at my four feet, I baby stepped to my door. My head was pounding. I heard mom in the kitchen, and I continued to make my way to her. Finally, making it to the kitchen I explained to mom everything I was seeing was double and my head was in excruciating pain. She could see that my eye was looking lazy and not following the correct sight of path. She immediately called my doctor at the National Institutes of Health in Maryland. The next thing I knew mom and I were on a plane in route to the hospital.

My highly concerned doctors raised a bundle of questions. I was just confused. The next days consisted of scans, blood tests, lumbar punctures, MRI’s and a cocktail of other questions and perplexed faces. As more symptoms presented, I became more puzzling. While the doctors continued the tests and waited for results, my mother frenzied onto the internet for her own studies on my current symptoms. She and the doctor were emailing each other articles in the wee hours of the morning. My doctor told me that she needed more symptoms in a joking kind of way. Then without warning I awoke with no feeling on the right side of my chin. With this new symptom, it pointed mom in the right direction and with just enough evidence she asked the doctor to pursue this. My doctor asked some colleagues in the Cancer Institute to check me out. They were leery. I wasn’t presenting the way I should. By the time we did another lumbar puncture and received positive results, the blood work was finally showing cancer numbers. It only took two long weeks of looking, but with a diagnosis the treatment could start.

I can remember my immunodeficiency doctors who took care of my day-to-day health and then the new faces of the oncologists that came into my room to talk to mom and me about my diagnosis, Stage 4 Lymphoma. I didn’t know what Lymphoma meant, but their expressions were poignant. After they left, mom looked at me, and I asked her what Lymphoma was. With tears forming in her eyes she told me, “It’s cancer, honey”. When I heard those words I broke into tears, and mom hugged me. We both cried, and I felt so scared.

The next five months I endured chemotherapy along with other treatments. I vividly remember feeling miserable. The nurses would enter every morning with big smiles on their faces, and I had no thankful grace to offer them. I was so glad to see mom every morning, and she stayed until I went to bed. She kept a positive attitude, and it gave my depleted spirit refreshing hope. The gifts and letters I received were amazing. Cards filled my window space, posters filled my wall, and stuffed animals filled my bed and night stand. Gifts were abundant. Everything spoke of faith and hope, and that always put a smile on my face.

Being 10 hours from home, I didn’t think anyone would come to visit. To my surprise, I had the best encouragement. Three friends came and loved on me. They kept life exciting with stories and games. My family came to visit. Being with them was therapeutic. I was sad when they left, but the visitors didn’t stop there. My aunt and cousins would bring food saving me from hospital food for a couple of days. My boyfriend came for the Thanksgiving and Christmas holidays. We had fun recreating the random things we would normally do at home. As we talked, he was able to understand some of my frustrations. He helped me keep my sanity. The games, jokes, and stories that we were able to share really helped lessen the sensation of being cooped up, and I felt more normal and happy. Another saving grace was a visit from my youth leader. Although I was easily exhausted, she eased my struggle. She talked with me about my fears, and I told her how I felt. Having someone you can trust who will listen and talk to about how you truly feel lightens the weight of your heart. Not realizing it, I had locked up some deep feelings. Talking to her released some feelings of anger, fear, and I was able to be vulnerable. After every conversation my spirit felt freer. One more visitor really made me see the joy in life. She was one of my mom’s friends who drove the many hours out to Maryland to see us. Exuberance burst from her. Her personality not only perked me up but allowed my mom to laugh, smile, and joke around. During Christmas, she decorated the bland, white hospital room with every festive thing you could think of. I’m so thankful for each visitor. Each one of them brought me a little bit of home. Without a doubt, these friends helped me through one of the hardest things I’ve ever had to endure.

After arriving home, my new outlook on life found myself promising I’d never take life for granted. The whole experience brought my family closer, especially mom and I. Looking back at that traumatic event; it was the best thing that has ever happened to our family. We have more fun and laughter now. Every time my alarm sings, I’m unaware of what the day will bring, but I know with my family and faith that I am equipped with everything I need. My trust and God and the prayers I received ultimately brought me hope. Without hope, things would have been exceedingly more difficult. I’m so thankful for my life.

Day 205- DANCING WITH THE LORD

Wow, I sure did let a lot of days pass since my last post. So, what has been happening? Karly and I flew to Maryland on July 14 to attend Reid's Memorial Service just prior to her hospital treatments. Tracy and the girls drove out. The service was honoring to him and his family. Of course it was emotional, but so good to see many family members. We were cared for by Debbie and Ridge's friends for meals, and special events...bonfire, horse riding, and swimming. Konner and Kassidy were able to spend some extra days with their cousins before they attended their second Sibling Day at NIH. They experienced a full day of activities planned just for the siblings of the patients at NIH. They were interviewed as well by CBS news in Bethesda and quoted in a Gazette and Newsletter.
Here are the various Sib Day stories beginning with Channel 9News Now last Friday:
http://www.wusa9.com/news/local/story.aspx?storyid=162638

NIH Clinical Center:
http://www.cc.nih.gov/about/news/newsletter.html


Gazette story:
http://www.gazette.net/article/20110727/NEWS/707279562/1036/siblings-get-window-into-world-of-nih-medical-procedures&template=gazette

Karly's appointments went as usual. She continues her treatments. She still hasn't felt well since February. We have looked into several scenarios and tried various drugs related to those scenarios. No improvements noted. Upon leaving last time, we started a different antibiotic. It seemed to do something to her abdomen and stomach unlike anything she had ever felt. She had difficulty explaining the feeling. Never-the-less, her appetite decreased largely, and she just didn't feel like eating. After 2 weeks of this medicine, the pain became extreme in her abdomen. She discontinued this medicine. After 2 weeks off her stomach, abdomen and appetite are better. The good news in all of this is that finally after almost 6 months of feeling really crappy, the headaches left for 3 days, she had energy, and she felt clearer than she could remember. So the story continues: after being off the drug for two weeks, all the symptoms returned. Upon our last visit to NIH over August 14-16, it was determined to admit her Sept.1-10, put a PICC line in, give her some heavy duty antibiotics and a fungal for her resistant fungal infection and blast those bugs. I will have to back track on my next post to include the vacation to Alaska which occurred between those two visits. For now, life is staying busy. Being gone for at least 8 days out of 21, then having the weekend take up another 5 days, that leaves 8 weekdays to get everything done I would normally do in 21 days. Of those 8 days, the evenings are volleyball and dance and meetings. The days are schoolwork, appointments, paperwork, and preparing for all said activities...you know... the parent roles. blah blah blah...not complaining really. I was just trying to figure out where all my time goes. The good news about that is "God is in control of all of it". It just ebbs and flows according to Him. I have to remember to not get ahead of myself. I actually was blessed to have about 5 hours catching up with a close friend in Indy yesterday. What a joy it was! Things in the Koch Household are well with each other and well with the Lord.
Love,
Mom

Day 156-DANCING WITH THE LORD

Since I've been home, my days are filled with whatever the Lord brings to mind next. It has been busy, but I made it to the pool for the first time on Saturday. That
was peaceful. It allowed my mind to focus and rest. It just floats between the two. I have started pulling Kelsey's clothes out of the drawers and giving them a good washing. The girls will go through whatever they need, save a few items for them to grow into, then give the rest away. I found a few gems...things Kelsey wrote...like favorite quotes and a special message to Trent. WOW! Here are some of them: "If you live to be a hundred, I want to live to be a hundred minus one day, so I never have to live without you." "True friendship is like health; the value of it is seldom known until it be lost..." "A real friend is one who walks in when the rest of the world walks out." "Friends are God's way of taking care of us." "If you should die before me ask if you could bring a friend..." "Everyone hears what you say, friends listen to what you say, best friends listen to what you don't say." "A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words..." I have to say I love these. They make you think. First what kind of friend are you and then, what kind of friends do you have. Through so many of you, God provided and cared for us for so long. It is one thing: to bring a meal a few times, but for 4 months(x2) WOW! ...to send one card, but to send them weekly for months, to pray once, but without ceasing, to take care of the girls needs for months, to give of yourself sacrificially in labor or finances. The list is complete, because God cares for us completely. Kelsey was a faithful friend, a steadfast friend, a trustworthy friend, a friend of confidence, a friend with wisdom, you were blessed to be her friend, but hear me, she was blessed to have you as a friend. Thankfulness rests in my heart.
"So then, just as you received Christ Jesus as Lord, continue to live in Him, rooted and built up in Him, strengthened in the faith as you were taught, and overflowing with thankfulness." Colossians 2: 6, 7
Love,
Mom

Day 150-DANCING WITH THE LORD

Karly is resting back in her hospital room. They found a small cut in her esophagus which may be where she gets her food and pills stuck. She is on a strict no food, ice, water, nothingness diet today. If she doesn't get worse with pain, then it most likely is healing, and they will let her go tomorrow. She had a lot of secretions in her lungs. He cleaned it out and is sending for cultures. This may be the cause of her extreme tiredness. It doesn't explain her headaches or swelling face, but it is a start. If something serious is growing then she will have to stay. If it is not, then they will let her go and treat with oral med or bring her back after her week vacation with Zach. She has the same condition Kelsey had in her esophagus called Eosinophilia Esophagitis. I think the cultures will confirm this. There really isn't anything she can do for it. She could take steroids which she cannot because the skin viruses will explode. She can swallow an inhaler med, but this makes her hoarse. We will see if there are any other options. It has been another difficult week. She is taking it like a trooper.

The meeting about Kelsey went well. All results are coming back with no answers. This really gives me more assurance that it was Kelsey's choice to leave. All along I've felt that she was hanging on for us. She did make it clear that she was ready to see Jesus. I've been trying to relive those last three days to find where things went wrong. What else could we have done? The reality is that everything was fixable, the infections were under control, the kidney was fixable, the lungs weren't flooded, the organs were not infectious, the fungus was under control. She couldn't maintain her blood pressure. It wouldn't respond to medications; her heart was quitting. The most likely answer is that the chemotherapy damage her heart, but even that currently cannot be proved. It seems as though God answered her request, and she thankfully went with such grace and beauty. It still doesn't fill my hole to know this, but I am working on getting through this "fix it" stage. God is so faithful in helping me through this stage.

The news I was alluring to in April is ready to be released. I had been looking for the "way" I was going to honor Kelsey. I was looking into scholarships and foundations. Nothing seemed right. I was looking for God to provide the answer. I was being patient. Two months to the date of her death, I was at the AFCEA Gala in Maryland with Karly. I had the privilege to meet a mom and daughter with a story that touched me as soon as I heard what the mom did. I had that lightning strike moment. It was very poignant. I will always remember it. Later that evening as the other mom and I were watching our children dance, we were able to talk. She told me that it was strange that she didn't know us, but she already loved us. We were tied together then. We met the next night at the Children's Inn where she is mentoring in the "way" I am honoring Kelsey. I have launched an organization called DOCK8 Connection. The brochure it almost complete. The web domain is secured...dock8connection.org. I am using a template for now. Tyler is so busy, and setting up a website from scratch is time-consuming. Eventually, my hope, is that it will be personalized to be uniquely ours in a style fitting of Kelsey. For now, it is just getting information out. Eventually my mission is to connect families together, support research, and educate the families and medical community. In three weeks, we are trying to coordinate our visit to meet our first two DOCK8 families. Karly is very excited. Please pray for this to go smoothly and that we would connect with each other in a very special bond. Please pray that this organization will grow to meet the needs of the families, and that God will be at the very heart of it. DOCK8 is a disease, but Kelsey was not a disease. She had a very pointed mission, and I hope to continue her message.

Debbie and Ridge finally made it home from their weeklong nightmare as she calls it. The weather was bad, the flight was late getting to their connecting flight, they had to spend the night in Denver, and made it home Thursday evening. They missed their meetings with the pastor and funeral home, so that is what is happening with them today. All these things seem rather inconvenient, but in the larger scheme of things, I have to think that God is in control. His timing is perfect, so let's roll with it. I do imagine Grandpa, Kelsey, and Reid dancing around. It surely brings a smile to my face.

So for now, continue to look to God our Father for all things. He is faithful. Praying that Karly will be healed on earth as it is in Heaven.
Love,
Mom

Day 146-DANCING WITH THE LORD

It has been 3 weeks. The time has been flying by for me. I kept meaning to update you, then something else would crop up. Karly's medical situation hasn't changed much. She still has the headaches every day, extreme tiredness, and now her face has been swelling. We will be here a week for IV fungal treatment. If this isn't working with the sinus and face swelling, they may add an IV antibiotic. Just being flexible yet again. She gets another set of cancer scans on Wednesday. She just wants to feel better. She goes in spells where she can handle it, then she breaks down. It is an emotional roller coaster.

The team had a meeting to discuss post issues about Kelsey. I hear that is was not a satisfactory meeting in regards to results and answers. I will meet with the doctor later this week. Pray that I will be wise with my questions. I have a feeling that this may cause me grief, but may the Lord grant me peace and resolve. I am stuck in this "fix it" stage. It seems to be less often in my thoughts, so I may be moving out of this stage.

I received a phone call from my sister, Debbie, this morning. Her son, Reid, 13 yrs. old and one of the triplets, passed away during the night. Debbie, Ridge, all the kids(not Reid), and all of my other family are in Yellowstone National Park for a weeklong vacation when this call came this morning. It was a shock. He was a happy camper yesterday showing no distress. The only consolation is that he, too, no longer has to deal with his earthly body being homebound in pain. Now he is dancing out of his rain.

Since I will be here all week, I hope to update you on more cool happenings! Praise be to God as we continue with His guidance!
Love,
Mom

Day 125-DANCING WITH THE LORD

Very much relieved right now. We flew in early for this visit to re-check her spinal fluid pressure and re-run the tests on the spinal fluid. Most all the tests are in as negative today. Ruling out the bad things is a good feeling. We have tried a couple different additional antibiotics without any good changes only bad side effects, so this is not working. We are adding some additional antihistamines and a different nasal spray in the hopes that it starts clearing her head, she gets more rest, and the itching will subside. She is so tired of feeling bad. With the good news today, maybe she can start anew in her mind. I am so grateful that they are watching her so closely. A few more appointments tomorrow, then flight home in the evening. I work on Wednesday then off to the dental convention in French Lick until Saturday. This is a long haul for the family, but this is nothing compared to what they have gone through. I'm behind on my continuing education credits, so this will help me catch up. Plus getting to catch up with some of the girls is so fun and much needed.

Sister Debbie and Deana picked us up from the Inn last Friday. We went to Lancaster, PA for the weekend. It was a belated birthday present for Karly and Deana. Debbie spoiled me with a massage and pedicure. The girls had massages and manicures. On Saturday night, she took us to a showing of "Joseph" at the Sight and Sound Theater. It was fabulous. Amazing singers, set, and even had live animals. It was an awesome weekend away.

Karly felt yucky this morning...a combination of extreme itchiness, stomach cramps, tiredness, and headache. It weighs heavily at times then the dam breaks as it did this morning. She is so loved here, and they took care of her. She is better this evening and looking forward to coming home.

My struggles are the same. My only comfort is in the knowledge that my deepest longings will only be fulfilled in the Lord. I have to renew this thinking all day long. I covet your prayers for us all. Thanks!
Love,
Mom

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

Day 23-DANCING WITH THE LORD

Today in my devotional it was talking about sacrifice. "For love seeks not her own, and to please me you will sacrifice your personal wishes whenever they run counter to My highest purposes for your life." I only know that my purpose is to be an available vessel that He will work through. That is what Kelsey did. I rest assured that my personal wish to have Kelsey live out a long fruitful life on earth was not His purpose, and since that is a fact then there is surely a higher purpose in the works. This makes me smile. She lived out her life in complete obedience to Him and her mission: to save the world is being lived out in so many lives. She was God's daughter, and He did use her life for his purposes.

So, when I think about Karly, what do I think. I think Kelsey made a better way for her. I have to guard my heart from fear, doubt, and every negative attitude for only the strong in heart will prevail. I have to continue to have faith "that God causes all things to work together for the good to those who love God, to those who are called according to His purpose." Romans 8:28.

Love,
Mom

Day 21-DANCING WITH THE LORD

The past week has had its moments of crying. I have these moments when I feel the absence of her presence. Moments like renting a movie to watch without having her there. She loved watching movies. Going through her room at random times looking for something one of the other girls could use makes me miss her. Thinking about what to do for Spring Break because she usually went with us. Getting ready to return to NIH where she and I spent so much time. Thinking about what could have been. When I really think about these things, it is really about self-pity. I want her with me. I am missing those moments we dreamed of. When I focus on God's plan, God's timing, God's healing of her, seeing her dancing in Heaven, that is when I don't feel sad. I just read the book "Heaven is for Real" by Todd Burpo. It is an uplifting book. It confirms for me the beliefs I have of Heaven. Of the reality, Kelsey is living in her glorious new body. She is so happy. She had those glimpses of Heaven. She knew what was waiting for her. So I have a choice to live in deep dependence in Him or live in despair(the hurt of not holding her and having her here). It really is so simple...I don't mean to live it but to choose it. Living a Jesus-centered life is not necessarily easy. In fact, we are called to a higher standard. Kelsey got it. Her life oozed Christ. She never had anything easy, except maybe dance. It came easy to her, but it was painful at times. She reflected Christ because she knew her mission; she knew who she was in Christ. She ran the endurance race and ran it completely to the end. We are all in a race, so let us do it to reflect Christ. If you want to hear an inspiring, encouraging sermon, go to unionchapel.com, media resources, sermon for Feb. 20: Facing the Future. It was awesome, practical, and something to strive for everyday.

For those who are anywhere near the National Institutes of Health, Bethesda, MD. We are having a Memorial Celebration of Kelsey's Life on Feb.28, at 2:00, in The Chapel on the 7th floor of the Hatfield Center, Building 10. You are most welcome to join us.

Love,
Mom

Day 14-DANCING WITH THE LORD

WOW! We, as a family, were blessed by Kelsey's Celebration of Life on Saturday. If you weren't able to share it with us on Saturday, you may still be able to view it on the web at: www.livestream.com/kelseykoch
There are commercials associated with this, just try to x them out as soon as you can.

One of the realizations I learned over the weekend after speaking with a dear friend was how gracious God is. He didn't just go snatch Kelsey away, He brought her into His presence on many occasions. One of the first occasions I can vividly remember was on Dec.26. During the night of December 25, she was in "His presence seeing and hearing many things". She didn't speak of these things until her Grandma entered the room and out of the blue delivered a sight she had witnessed during the night. She had seen Grandpa singing with the Angels. I truly believe that on occasions, He gives people "glimpses into Heaven". Kelsey had a glimpse into Heaven that night. I had asked her about this later because I was very interested in what else she saw. I wanted to know about Heaven and the things she had seen. She simply and matter of factly said that she "saw and heard many things and that only those they were meant for would hear about them." I was in awe. We saw her giggling when there was nothing to giggle about, and many of those times when she was "out of it" she was in His presence. It is really cool to know this about God. She had the choice to stay or go, and actually who would ever choose to stay when you have had a "glimpse into Heaven". You see, this is what makes her homegoing special. Yes, I miss her greatly, her dancing the DDR, her just sitting around, her sharing my shower space(with all her shampoos, razors, soaps), her cooking her special foods, just her. Since I know her desire was to "be with Jesus", then I can rest a bit easier. My mind still wanders to the journey, finding the point when this outcome wouldn't have been so, but you know, it was her time, so nothing was going to prevent this outcome. Ecclesiastes 3:1-8 There is an appointed time for everything. The part that torments me is prevention, so this is where I need prayer. I am a preventer...don't put that cup on the edge of the table, or next to your elbow, or don't take that to school...you will leave it. Part of that is wisdom, experience in knowing your child, but part of it is not having to deal with the aftermath. Maybe aftermath is part of the learning...I don't know....just babbling. I KNOW it was her time, but still wanted to prevent it. I want to know things so I can do all I can do right for Karly. I want to protect her. Part of Kelsey going first was just that. She knew it. She accepted that. Learning everything the doctors could so it would eventually be perfected for the next one was part of the plan. Little did we know how difficult this would be. These are the battles of the mind...between trusting God and wanting to take control. I want to know the things I need to know, but put the rest of out of my mind. God knows what I need; I don't. He has been faithful all along this journey. God's plan is not fully revealed so that we can understand it, but we HAVE to TRUST in it. She was so willing to sacrifice for others which breaks my heart because I wanted to live out our dreams, but also makes me so proud of the way she chose to live her life fully committed to God.
Love,
Mom

The Celebration

Hey everybody,
What a great celebration Saturday. So many wonderful people all praising God for a life well spent. I want you to know we shared in a time that was exactly what Kelsey would desire and what God smiled upon. We felt saddened by the reason for the event but by the time it was over I could really sense a joy at knowing we had honored God and symbolized just what made Kelsey the person she is.
God truly smiled on Saturday. As this blog goes along, you may see more testimony to how Kelsey continues to influence people. The stories I heard on Saturday inspired me, humbled me, and honored the power of God working through my precious daughter. There were life changing stories of empowerment and joy, hopelessness to transforming new beginnings, and shared joy and togetherness. Yes, you blessed me with tales of a person committed to loving like Jesus and sacrificing for His good pleasure.
Then there was the worship. It was so genuine and uplifting, libertating and freeing. There was a spark of God that kindled a blazing fire. I hope you recieved a saturation of God's smoke. I know I did.
Thanks again for sharing and showing the support you have been all during our rainstorm.
Just a reminder that we are still praying for that perfect match for Karly. We don't know when or if Karly will be dancing in the rain, but God does and will share that with her in His due time. And when he does, Kelsey's dance instruction will surely allow us the steps needed to dance in that rain.
Love
dad

Day 7: DANCING WITH THE LORD!

Tammy asked me if I would write something for the blog several days ago. I have had an extremely difficult time in deciding what to share with all those of you who have been so diligently seeking the latest update on Kelsey. I’m just guessing that all of you were doing the same thing I was, even when I out to NIH to stay with Kelsey during the twelve hour night vigils. The first thing I’d do upon waking was to check the blog or Tammy’s Facebook page to see how Kelsey was doing that day. Many a day I checked in probably 10 – 20 times when nothing new was there. Now that the shoe is on my foot, I wonder how Tammy was even able to put words to the days, nights, ups and downs.

To me, the sixteen days I spent at NIH with Kelsey feel almost holy. Definitely they are experiences hard to share by putting them in words because many are painful and those are better left in my head and brought to the Counselor and One who was there with me. After much thought and seeking God’s direction for what to “share”, there is a definite situation that stands out that I believe exemplifies what Kelsey believed, felt, and experienced the last few days when she had one foot in this world and one foot in eternity.

The Long Night

1/31/11

All night Kelsey had been in pain, some of the worst I personally had seen her experience. However, even in the midst of this long night she had continued to chuckle all night. I couldn’t understand what she was saying when I asked her why she was laughing. On this night, we moved for the last time from the pediatric unit to the ICU. *(If you have a weak stomach, you may want to skip the next few lines). She had just finished vomiting blood again and said that she wanted to lie back down. She did, and within just a couple of minutes she was chuckling again. I asked her again why she was laughing. This time she just smiled and said, “cause I’m happy, I guess.”

That’s why Kelsey was so special!!!! I liked her before I went out to NIH, but definitely came to love her and her fight, determination, and positive attitude. However, it is firmly my belief that Kelsey was getting glimpses of heaven, and it must be just pure delight! She had told me on several occasions that she just wanted to go be with her Heavenly Father and let Him hold her in His arms. It reminded me of the verse in 1 John 4:18 that says, “There is no fear in love, but perfect love drives out fear….”

Now for a few lighthearted moments I think that you might find interesting. My goal was to make a list of some of Kelsey’s favorite things by asking her one question a night. Some nights, it just didn’t work out to talk about them. The following are the answers to seven of those questions.

Things that are Kelsey’s Favorites

1. Christmas present – her iPod

2. Movie- (series) – Lord of the Rings

3. Colors – green & blue

4. Food – ribs, chicken, broccoli

5. Holiday- Christmas & Easter (Easter ended up winning out)

6. Her favorite thing with her dad – Trading backrubs (they had a deal worked out to give equal times)

7. Favorite pet – her dog, Midnight

The last thing I’ll share is because I just happened to take a picture and maybe you’d like to see her smile on more time. I apologize for the quality of the pictures, but it was dark and taken from my phone.

After noticing that beautiful smile of hers……….. take a look at her socks. The previous night Kelsey woke up and was awake for a while. The only thing good on at the time was QVC. (I hear laughter in the audience!) Anyway, the ladies were modeling some knee high socks of assorted colors and design. Kelsey commented on how she really liked the black ones with multi-colored dots. Oddly enough just that morning I had gone into the gift-shop and had seen these really awesome socks. They had several varieties, but I noticed these black ones with multi-colored dots!!! So of course the following morning I had to go get them for her. She really liked those socks. : )

Written by Kelly Beeson

February 7, 2011