Dancing Through The Rain

Day 284-DANCING WITH THE LORD

2011-11-12T09:50:00.007-05:00

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

2011-09-30T11:01:00.006-04:00

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

2011-09-07T12:32:00.002-04:00

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

2011-09-03T19:59:00.005-04:00

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

2011-08-25T19:24:00.003-04:00

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

2011-07-07T10:44:00.002-04:00

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

2011-07-01T12:20:00.002-04:00

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

2011-06-27T13:34:00.007-04:00

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

2011-06-06T20:38:00.003-04:00

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

2011-05-17T21:21:00.004-04:00

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

2011-05-12T12:16:00.000-04:00

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

2011-05-09T12:27:00.006-04:00

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

2011-04-18T13:56:00.003-04:00

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

2011-04-03T16:10:00.006-04:00

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

2011-03-18T13:07:00.003-04:00

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

2011-03-07T11:44:00.005-05:00

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

2011-02-24T11:47:00.003-05:00

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

2011-02-22T15:19:00.002-05:00

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

2011-02-15T11:39:00.002-05:00

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

2011-02-14T13:37:00.002-05:00

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!

2011-02-08T13:23:00.005-05:00

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

Day 6

2011-02-07T10:45:00.003-05:00

I am now titling the entries by her number of days "Dancing with the Lord". Since I've been home, the nights are more restful. I think being away from the "thick of it" has been helpful. I still find myself wondering if I was a good mom, did I do all that she needed, was she pleased with me. I do hear these things from others which is helpful, but when I reflect back on those days in the hospital, I still ask, "was I "good" then?". I think the enemy wants me to doubt myself. He will not win. I found the birthday card she gave me at Thanksgiving, and it answered that question for me. I will keep is as a reminder of what she thought about me. What a daughter! The devotional today spoke right to the heart of this issue..."Remember that I can fit everything into a pattern for good, including the things you wish were different." I am hoping to live so I never have to ask the question, "Could I have done something differently?" I will find myself asking this more freely to my other children. My living moment to moment will help with this. I will capture more of what is happening at the moment and look to the Lord for the answers. Life certainly isn't so much about the school work, the scholarships, the extracurricular activities, although these things are very important, and they do make life spicy. It is more about their character, so they can live fully for the Lord, and they know how to look to the Lord for their guidance. Anyway, you know what I mean. It is making sure this is what is best for them, and not so much "my agenda". Kids don't always like the things we make them do. This is normal. I remember Kelsey hating so many things she had to do. Mostly, she was tired of being told to take this medicine and that medicine and get that homework done or finish that project. She matured into these decisions and choices, so she could make them wisely herself. It is hard molding and training children in the way they should go so they won't depart from it. Kelsey had many mentors in her life who helped her be secure in who she was. She knew herself and knew what she desired. She was willing to pay the ultimate sacrifice to find it and keep her focus on letting people know that God is good all the time. I find peace knowing that God intended for me to "be" at this point of time, so I will look to Him for my path each day. It is hard for me to move out of the way, but I wouldn't want to move forward without Him. I am amazed that people can go through any pain and suffering without Him. He is my hope, my future, my comforter, my shield, my provider, my peace. Kelsey was only able to endure all those months with help from the Lord. This is where her strength was pulled from. As she tired, he continued to speak to her. He was drawing her near to Him in so many ways. There was a gradual, gracious drawing that was taking place. He was showing us His plan, yet, we continued to believe in His miraculous power. Even after she flat-lined we believed He could bring her back. Even after the night, I believe she could walk in the next day. It is because we believe He wanted her that we can walk in assurance. It was her appointed time. The enemy stole nothing from us. He didn't steal Kelsey. Kelsey's life was surrendered to Jesus, so it couldn't be stolen. Kelsey is living an abundant life in heaven.
Love,
Mom

Day 92

2011-02-04T14:40:00.004-05:00

Kelsey began Day 1 on Wednesday Feb. 2 at 5:17pm. Today was to be the beginning of her new fight. It is sad we didn't get this opportunity, but then again, as we trust our Heavenly Father, I can only think that He just spared her more suffering. The toughest time for me right now is not falling asleep, because I am tired at night, but after 4 hours I awake with awful questioning of what took her, what will the autopsy show, could it have been prevented, and these struggles continue for hours with me praying for these thoughts to stop and put my mind at ease. The answer to these thoughts will not comfort me, at least I don't think so. I am an analyzer and a planner, and this was so out of control for a long time. Somehow I keep wishing I could go back in time and find that moment when this would have been reversed. But that is not how life goes. You can only work with what you have in that moment. The doctors are not all-knowing. I have to remember that God could have left her here and instead He took her home. When I gave Kelsey her two options that would pan out after surgery, her sigh of relief and choice to be with Jesus has helped me so much. I have accepted this and know that God is sovereign. It was best for Kelsey. The void is so big. Kelsey was so big in life. She chose to donate her body to NIH a long time ago. We honored her wishes. She wanted to help other Dock 8 patients and this was one way to do it. She always loved science. She wanted to be a doctor, but her health wouldn't allow this rigorous course. It is amazing to me that she taught the doctors and nurses here so many things with her enigma-like disease. The vision shared awhile back on the blog about Kelsey standing in front of a bunch of doctors wearing a white robe has truly happened. Not as we imagined, but as God intended. People asked where to send flowers. This really is not necessary. I would rather money spent would help Be The Match because we still need a perfect match for Karly, or to just help us with whatever we feel led to do in Kelsey's honor. The Celebration of Life for Kelsey will be at Union Chapel Ministries, 4622 N. Broadway, Muncie, IN 47303 on Saturday, Feb.12 at 11:00am in the sanctuary. If her story has touched you, we want to meet you; share the good news with us. I am leaving NIH soon to travel home to be with the family tonight. Pray for strength, safety, and joy as we grieve, yet celebrate the happiness she brought to us.
Love,
Mom

2011-02-03T08:23:00.003-05:00

Someone told me that finally the rain has ended. A wonderful touching comfort to know that this storm we have been dancing in has subsided. But not if I know my Kelsey. You seen, the Lord promised all Christian's trials and tribulation on earth. So I'm sure for Kelsey, being with my Lord, her earthly storm being overcome, there will be a heavenly storm to dance in. Oh the pain and the suffering will Not be there, These rain drops will be soaking joy and refreshing life. But she isn't done serving her first love. For eternity she will want to dance in His perfect storm.
We said so long on groundhogs day. That's sorta like a hamster isn't it. Anyway, our grief is real. It is hard to comprehend a life here on earth without my Sweet Pea. And it will be hard for sure to count to 7 and not 8 when we do the head count in the van. There are real things, real plans I so wanted to see happen. A dad always thinks of the moment when he walks down the isle, presenting his lovely daughter to be married and gaining yet another family member as they join in the new mix. There were some pretty special events yet to be covered in Kelsey's earthly life. The regret of never having those things is painful. But I am such a pig anyway. I have always gotten so much more out of life then any man deserves. And I will be comforted with the wonderful memories of a perfect beautiful life changing daughter. Kelsey was / is the perfect daughter. I can't wait to catch up just a short time from now when we meet with my Jesus.
So many of you need to be commended during this dance for the beautiful Christian character you have display as you carried our umbrella while our hands were full, guiding us lovingly around deep puddles, and offering us such kind shelters in this storm. I will never have enough thank yous to go around. One can only hope our joy can be made complete by our eternal bond we will share. And if you are reading this and don't know of that bond, please consider the weather man (Jesus)! For without Him, I would be so lost right now, but with Him, I have Joy, Hope , safety, security , and a future of praise. Tammy and I love you all and truly can't wait to hug you all around the neck. I know for some of you that will be soon, but for others, that hug may be in heaven. But a hugging we will go!!!!!!

Day 90

2011-02-03T00:38:00.003-05:00

Kelsey went home to Jesus today at 5:17pm. We spent most of the day hovering over her bed, rubbing her head, her feet, her arms, and holding her hand. We just wanted her to feel our presence. We sang songs around her bed; we played her Ipod. We talked about things she liked, music she would be dancing to, told her we loved her over and over again. We also told her it was okay to go be with Jesus. She may have continued this fight longer than she wanted for us, but she fought hard. She suffered so much. She still had the most pleasant way to greet her doctors and still had the sweetest smile. God had a plan. We believed to the end that she would get a miracle, yet we also saw her going away. It was peaceful to the end. She was peaceful to the end. We were surrounded by our family. Kelly, Angie, and Karly were with Tracy and me. Tyler, Trent, Konner, and Kassidy were on phones singing with us. We were able to skype, and they all were able to see her and us. So many staff came by to hug on us. My sis Debbie with Deana and Hannah came to the hospital to just have closer. They are spending the night, and we were able to share thoughts, pray, and cry. We have a hole. No denying that. I am happy the suffering for her and our family is over, but so sad for our hole. Kelsey's personality was big...her faith, her laugh, her smile, her dancing. She certainly did things big. She left this world big also. By that I mean she touched more lives than I know. She stayed a medical mystery to the end. She has paved a way for other Dock 8 patients, including her sister. She was an incredible young woman. I feel so proud to be her mother. I am ready to come home, but this is not how I pictured it. I really thought I would be bringing her home. We have details to finish up here. We should be home this weekend sometime. We will have a memorial service for her in Muncie and probably here at NIH also. I haven't slept for 2 nights so I am heading off now to do this, but I wanted you all to know that we are not mad, angry, or otherwise. We have a void that cannot be filled for now. We are anxious to hear about how you knew Kelsey or how she has touched you or how her story has changed your life or how you have drawn nearer to Jesus. These are the things that will help fill the void. We want to fill the void with this good news.
Love,
Mom

Day 88

2011-01-31T18:17:00.002-05:00

This blog brings a huge heavy heart. Kelsey went to the ICU around 2:00am. She had very low blood pressure and needed oxygen. Early this afternoon she went back into the operating room to look at the gut, sinus, and lungs. She is not doing very well to say the least. She has been intubated and is on a respirator. Her blood pressure has not stabilized. She is in septic shock with multi-system organ failure. This looks very grim, however, has she not survived the last crisis with a miracle. So I am pleading again for that miracle to bring her back. The next few days are critical. If they can stabilize her, they can move forward with chemo and the transplant. It was unique today in that when I told her she was going to the OR she usually asks to be drugged real well. This time she told me she was scared. I asked her, "Scared of what?" She said she didn't know. I told her there were only two outcomes...either she would come back to me or she would go home to Jesus. She said that she would like to go home to Jesus. This made her smile. I am grieving, somewhat already feeling a loss, but I haven't lost her yet. I know that God is in this. Medically, it does look grim. This is still when Jesus shines the best. I am glad that Kelly and Angie are here. I feel conflicted about whether to spend the night at the hospital with her, but I know that I cannot go without sleep if I am to help her fight in any way. She needs me. I know that even when she is sedated she can hear me. Pray for wisdom. Tracy is making plans right now to come out ASAP. The kids will remain home. I am a mess, need strength and reassurance. I cannot finish this right now, so all I can say is pray for a miracle.
Love,
Mom

Day 87

2011-01-30T19:28:00.003-05:00

Kelsey has finished 2 out of the 4 days of chemo. She's gotten sick a few times each day. She is still vomiting blood from her stomach when she gets sick. She is very tired. We completed her move to the transplant room today. The preliminary report on the lumens is no growth. They will continue to check this everyday and look for growth; sometimes it takes days, but it appears like the medication is working. This remains a pray request for several weeks to come. Pray for the donor. This week will be very busy as Karly is getting her stuff done Monday and Tuesday, so I flit between rooms to catch all the doctors. My plan is to work on taxes, fafsa, and css profile also while I have help during the day and night. I only have 2 weeks to get it done, so it seems to be a perfect time to do it this week while Kelly and Angie are here. Kelly will be going home sometime right after the transplant. This will leave Kelsey alone at night. I'm not sure how I feel about that. My thought processes go something like this. I will ask for God to provide the next night-time caregiver. I must accept that this may not be His will and of course will accept His provision also. I think that if Kelsey is left alone or with a stranger, then God will provide me with a trust in Him to keep Kelsey safe....how novel is that. He will keep my mind at rest at night, the dreams sweet, and the body still. So, please pray for His will to be done in this whole area of a night-time caregiver. "In the morning, O Lord, You hear my voice; in the morning I lay my requests before You and wait in expectation." Psalm 5:3
Love,
Mom

Day 85

2011-01-28T19:10:00.003-05:00

Even with her all-time high fever last night, the results that one of the new lumens is growing bacteria, and a few sores in her mouths, today was a good day. She had a PCA started yesterday. This is a personally controlled analgesia devise. It gives a low constant dose of pain control medication with the ability to deliver a bolus(a higher dose) every 15 minutes. This has seemed to be a wonderful move for her. She rests better. She isn't getting those high pain levels, and she is brighter-eyed. She actually ate a good amount of food for her. She was alert more of the day with many-a-smile today. The best news of the day was the results of the lumbar puncture revealed that the viral brain infection is at the lowest it has been since it was found. With another week to treat it before the new cells go in, it is expected to be even lower. This gives us a good start for the new cells to take over anywhere from 2-4 weeks later. They have started treatment for the bacteria growing in the line, so pray this is killed before the transplant and stays gone. The treatment for this particular bacteria is an antibiotic that suppresses the bone marrow. The transplant is moving forward on schedule. We move to a transplant room over the weekend. Chemo starts tomorrow. She is a bit nervous about feeling sick, so this is something you can pray for. They do an excellent job of administering pre-meds, but one never knows how one will respond. We found out today that our donor is a young man(around 20). I am so grateful that he is going through such a procedure. He will be in pain, and need to stay overnight in the hospital. We wrote him an anonymous letter today that will be delivered to him on Friday. After one year, if he agrees, we can communicate with each other. Pray now, that God's timing for this will be amazing. All in all, we felt peaceful and happy today. Even with the bad news, it felt positive. We could say that our peace was an encompassing gift independent of our circumstances given by God. May we all rest as peaceful tonight. Remember that Kelly's night is our day, so pray for her peaceful night for tomorrow morning. Thank you Jesus!
Love,
Mom

Day 83

2011-01-26T18:58:00.003-05:00

Kelsey is back to 1NW. She feels so much better when we return here. We only had to leave once for the MRI. She used her phone for the first time in a week; she asked for real food...Chinese. I had to order in for her. I guess it makes sense that she feels better. You are only in ICU when you are very sick. So, we are thankful she gets better and is sent back. Thank you for all the prayers. Prepping for the transplant is moving along. She still has several tests tomorrow...CT chest, EKG, Pentamidine Lab for a preventative breathing treatment in a negative flow room. Pray that after all that she will return to her room and not lose temp. Kelsey continues to impress us all. She has been through so much and is still fighting. Did I mention to thank you for all the prayers?

I was reading my devotional today, and it struck me that when I think about Kelsey she has already accepted living a problem-free life in heaven. In fact, there are times when this is what she prefers. BUT, she is still seeking Jesus' plan for her. She doesn't think He is done with her just yet. Her light is from Jesus, and it is now shining very brightly in and through the darkness of the world. May you find your purpose and peace through finding Jesus in a deeper way.
Love,
Mom

Day 82

2011-01-25T10:52:00.003-05:00

Yesterday she had the HIDA scan of her gall bladder. It took around 3 hours from the time we left her room and returned. Good news is that it is fine...no surgery needed. This is a sigh of relief. Fungus in lungs is the same as fungus in sinus. Not a surprise, but not happy news. However, no change in what we are doing. We went over her regime for the new transplant and signed the papers. YEA! Today sounds kinda busy. She will be getting her packing out, granulocytes, and a lumbar puncture. Holding off on MRI until tomorrow. Chemo starts on Saturday. She will get 4 days of two kinds. On Feb. 2 & 3 she has two days of rest(whatever that really looks like). On Feb.4 she receives a whopping dose of bone marrow from an adult donor who is willing to go under anesthesia. This is a big deal because in order to get enough marrow for her, he will have to get bone marrow aspirated from like 10 spots. This is a blessing for us, and I hope that someday we will be able to meet this person. Then we start the counting again. We will make it to Day 92 before we start over. Feb. 5 will be Day 1. The standard stay is 100 days. Everyday, I prepare by looking to Jesus to be in every thought and procedure. Everyday, I have to take a deep breath. Everyday, I struggle with wanting her to be well enough to come home. I want to come home. I feel bad about missing key moments in the kids lives. Trent turned 18. Tyler turned 21. Karly's living a "well" year. Missing prom and prom dress shopping. Little girls growing up. Trent's senior year and graduation. Seriously will be close as to whether I will make it home in time. Looking for the last possible date to accomplish this without hurting chances of family coming here over Memorial Day if we are still here. I know everyone understands and that all will be well, but it doesn't change what I'm missing. Then again, they are missing Kelsey, and I get to spend this time with her. I am lucky to be the one. God has a plan, and we are being obedient in this. The more time you can spend with Jesus, the more abundantly you can live. This is so true for all of us.
Love,
Mom

Day 80

2011-01-23T14:45:00.003-05:00

Kelsey had a very peaceful night the last 2 nights. She is remaining pretty stable according to her stats. She is pretty alert mentally, but still not remembering things that have to do with short term memory. I saw some pictures of what they were pulling out of her lungs today. She had one main branch of the lung that was blocked by a huge clot. It was like a finger but twice as long. It was amazing that she was breathing as well as she was. The sticky stuff in her lungs was perplexing and fungus was seen. Pretty much there isn't much else to do except maybe increase dosing which could cause kidney and other issues. The granulocytes and new transplant is what she needs now. She has another swollen area on the back right side of her head. She had CT of head, neck, chest today. They cannot say what is going on with this, but it is another thing to be watched. Tomorrow morning she has a HIDA scan to see what is up or not up with the gall bladder. No one is very excited about doing surgery on her. She should get another round of granulocytes. The packing in her sinus should be removed so she will have her other airway back which she will be very happy about. If all continues well, we hope to be back to 1NW on Monday.

Kelly is doing an outstanding job with the night shift. Pray for her sleep to return. She hasn't been getting very many hours. She awakes alert after 4-5 hours, but knows that this isn't enough. We en!joy some catching up just before I leave in the evening and just before she leaves in the morning. This is a fun time to hear the stories she has shared with Kelsey and of course the happening with Karly and Zach and crews at home. I skyped the kids and Tracy today. It makes Kelsey and I smile when we see their faces and hear what they are doing. Karly, Konner, and Kassidy make faces at Kelsey and she makes them back. It is cute. I am thankful for these small moments. I am thankful for all your prayers for us. It is not by coincidence than we are still surviving and by that I don't mean just breathing. It is by the provision of our God through all of you.
Love,
Mom

Day 78

2011-01-21T21:04:00.003-05:00

Thursday was a tough day. After 6 1/2 hours in the operating room, she returned to ICU. Upon returning her temp was lower than we like, and she was "not with it". It was a 12 hour struggle to return to her normal temp(which isn't normal for anyone else). This is really hard work for the nurse and Kelly and I. Kelly was in a 95 degree room all night. She was so exhausted by morning. I hope that means she has slept well today. I know that I slept better last night knowing she was with Kelsey. It sometimes feel futile because she doesn't know you, but really she needs someone to just be with her, pray for her, and love her. Today she had an ultrasound of her gall bladder and both arms. She has something that looks like sludge in her gall bladder. Both arms have clots. They gave her some good conscious sedation when they put in her new central line. It indeed has 3 lumens. They left the old picc line in because she has so many meds, and it is still working for now. She is resting with more good drugs tonight. The first of the cytology is back from the lungs. It is looking like she has fungus in there. This is really heart heavy news. This grew on 3 fungul drugs. They continue to hope that she can hang on long enough to receive this new transplant. The granulocyte transfusions will continue. When I get this kind of news, I feel so defeated. I know how big our God is and this is the hope for which we put her life in. She is getting tired of the fight. She has said twice in the last 24 hours that she is ready to go home to Jesus. Then, she says she can hang on. Then she says "whatever God's purpose is, is what she is doing." Really that is what it is about. That is what we believe. The suffering she is going through is for God's purpose, and she is all about that. The good news is that she won't remember any of it, at least we don't think so. I feel encouraged by all of you and it makes the journey more bearable. Singing Praises to God every day.
Love,
Mom

Day 77

2011-01-20T08:26:00.003-05:00

Kelsey coughed up blood until 11:30pm, then ENT came in to stop some of the bleeding. By 12:30 she was resting. About 4:00am she started with the coughing and bleeding again. Her SATS dropped in the 70's most likely after she aspirated some blood. Kelly called me at 6:00am telling me they were moving her to ICU. She is doing better on oxygen but still not sure why all this is happening. The procedures will hopefully give everyone a clearer picture of what is happening, and we can move on out of ICU. Pray for Kelly. She has had a tough job already. I know she felt bad calling me this morning at 6:00, but she is doing an awesome job. It is a really helpless feeling not being able to make everything go well. I am grateful that she is here, and I have a companion to share these hard times with. As per the course, she is perplexing everyone. She is really suffering right now with all this bleeding and coughing. She is extremely confused even though her temp is holding. She is now in the OR for the endoscopy, bronchoscopy, and ENT procedures. Pray for clarity, safety, and ANSWERS!

Day 76

2011-01-19T17:46:00.003-05:00

Joanna made it home safely. Kelly made it here safely. Kelly had a quick course in what to do and was left with Kels overnight. It wasn't a bad night, however, she did need oxygen which Kelly caught easily. Yesterday and today she has done pretty well. The diarrhea and vomit are gone. The fever hits every day but doesn't remain all day long. She didn't even need Tylenol for it. She started eating yesterday, although it wasn't much. She has eaten today also. She took a walk outside her room, the second this week, which she gets big praises for. Tomorrow, she will go to ultrasound to figure out the status of her clots in both arms and locate a good place for her new triple lumen tunneled line. After that she will go to the operating room for her endoscopy and bronchoscopy. She won't be able to eat for the first half of the day, so there goes her calorie count again. Her gall bladder is touchy when pushed on. She will get a special scan for this on Friday, and the new line will be placed. Again, no eating for half the day. Once the new line is placed, one lumen will be dedicated to iv food(tpn), the others will be used for existing drugs and chemotherapy. At this time, nothing is in stone, and everything could change, however the plan is that she start chemo around Jan.30 with cell day being Feb. 4. She has been tolerating everything they give her and takes things in stride. She is a fighter and gets feisty at times. Her temp changes continue to be a huge issue and quite limiting in daily activities. I took a break from writing and now as I return she threw up with blood in it and she is coughing up blood. We are waiting for the doctor to come in and praying for strength to keep this fight up, to stay strong while waiting on God's timing, and just not worry about tomorrow. They will most likely be giving more platelets tonight since she is bleeding and more prior to her procedures. Hoping for more answers after the procedures. Pray for Kelly tonight. This could prove to be a restless night. I grabbed one of my devotionals and read about peace. "Do not be anxious about anything, but in everything, by prayer and petition, with Thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7. Then, "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27
Love,
Mom

Day 72

2011-01-15T14:35:00.002-05:00

My devotional was so perfect again. I am not surprised, rather in awe. It says that I am surrounded by a sea of problems, but that I am to be face to Face with my Father who is my peace. If I gaze too long at the myriad of problems which is what happens when I look too far down the road, I will sink under the weight, BUT if I focus on Jesus, I am safe. Circumstances around me are treacherous-looking waves in the distance. If I fix my eyes on my Father, by the time the waves reach me they will have shrunk to proportions of His design. The future is a phantom, seeking to spook me. Laugh at the future and stay close to Jesus! Just wanted to share this and that today is a good day. Kelsey surprised the neurologists yesterday with remembering the 3 words they ask her to remember each time. This was huge in their eyes and they can say, see it can be done which means there is hope in this area, of course, by medical standards. She was rather alert today, doing Kelsey type things. She has kept temp since the last drop on Thursday. The biggest thing today is the granulocyte transfusion which will be done in the ICU. It may occur around 5:00pm. I'll post on Facebook when it is happening. They want to see a fever meaning it is working. We don't want to see anything else that would cause distress. I am not sure if I mentioned that a good friend, Kelly, will be arriving Tuesday late afternoon for the Tuesday night shift since Joanna is leaving Tuesday morning. This will continue to be a huge blessing. The other night when Kelsey had low temp the aide in the room wanted to take her covers off of her because she was sweating. This would have been awful. Fortunately, Joanna was around to set her straight on what was really happening. This is exactly one of the worries when I am away and exactly why Kelsey needs her advocate around all the time. Also, Kelsey had told me that she always wants to see a familiar face when she wakes up. I get this. It is a proven fact that family and friends are critical in the recovery of very sick patients. When I told the social worker that another friend had stepped into this roll. She teared up. It is really unusual to see this much support, so Praise the Lord it is well seen. Still thanking God and Still in AWE!
Love,
Mom

Day 72

2011-01-15T14:26:00.005-05:00

Here I sit pondering my time with Kelsey for this past week and a half. To say the least it has been good, hard, even funny at times. There is not much of a routine because you never know what is going to happen next.

My time is pretty much spent in monitoring her temp and giving Kelsey as much water as she desires. I try to be Kelsey's advocate especially when she gets a nurse or sitter who has not cared for her. When she is sleeping I pray almost constantly. Sometimes, our interactions remind me of when I babysat for her many, many years ago. The second night I was here I was so concerned about her temp that any time she moved her blanket off I would tuck her back in. She told me to stop fidgeting, and I said I would if she would keep her blanket on. That is how we rolled sometimes back in the days of homeschooling. :) Hopefully I am not a thorn in her side but rather a help and comfort to her. Sometimes I annoy her and other times I amuse her. Since I am on the night shift I try not to talk to her and try to give as peaceful of an environment as the nurses allow. Whenever I can give her comfort like rubbing her tummy or resting my cold hands on her head I do. She says it helps but makes her feel bad when I have to sit by her to give her these small comforts. I always answer her by saying I flew all the way here just so I could do this very thing for her. Then she gives me her sweet smile which makes my heart more glad then you can know.

The other night I witnessed Kelsey's low temp state. She was out of it but at one point I asked her if she knew the song Jesus Loves Me and if she wanted to sing it with me. She did. She sang it word for word and what a lovely voice she has. In all my years of knowing her I didn't know how well she could sing. Well, she went to sleep after a bit and her temp came up to a better range. The Lord is faithful and brought her through this time.

On a lighter note, we have had a few laughs. Tammy said I should share this next story so if Kelsey ever reads this and gets mad at me I can refer her to her mother. That's my disclaimer. :) So she got up to go to the ca-mode and did her thing. She then had some gas and said she wasn't expecting that. She said, “Well there you have it folks, the grand finale!” Her humor is wonderful, and it was so was funny at the time, but I am no kind of writer to spell it out for you in a better way.

The Lord can use us all in many ways and I am so honored and blessed that he would use me for this time. Hopefully Tammy was able to have more peaceful rest so that she will not be weary for the road ahead. My night time vigils are coming to an end and the scripture that comes to me for this time, for Tammy, for Kelsey is this:

Matthew 11:28-30

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

God is good beyond measure! I hope you all have a blessed day.

Joanna

Day 71

2011-01-14T21:39:00.003-05:00

Today was definitely a better day. My devotional spoke about listening for my Father's voice and heed not the voice of the stranger. Although our doctors are not strangers, they are the voices that I hear everyday telling me this or that news. I do listen because they have proven over and over again how they care for Kelsey and her future. I received many words of wisdom to help me know that it is ok for me to live only in my day. I cannot look to the future or anticipate it. It is really pretty painful looking at all the what ifs that may come. We cannot know her future. We can only know that God has a plan for her. I am back today with only today. Their are many plans looming ahead of us right now, but again it is only a plan, and it may not even come to pass, so we will wait for that to come. The current plans hold granulocyte transfusions for the weeks leading up to the transplant. The nasty brain virus drug has been started to kick that virus as far down as possible before the transplant. There is no more hope for the cord cell transplant to work that is why this drug has been started. Now they are tuning her up with all they can before the next transplant. It looks like it is a go. The donor has reported for the first blood collection to check for virus's and such. Then all the paperwork and scheduling to harvest the bone marrow will need to happen, and Kelsey's new chemo regime needs to be completed. The donor has agreed to go for the bone marrow, and she needs to make it to that point. She won't have to wait for the cells to mature. She will have an increased risk of GVHD. These are the happenings, so please pray how the Spirit leads. She goes to ICU tomorrow afternoon to receive her first granulocyte transfusion. Pray for only the little reaction that they want...just the fever.
Love,
Mom

Day 70

2011-01-13T20:05:00.004-05:00

Today is 10 weeks after she got her cord cells. Wow, more not good news today. So we already know that this fungus in the sinus is bad, well it is very bad. The Granulocyte transfusion is only a temporary help. It won't get better until she has an immune system, namely lymphocytes. She is still not producing anything, nor does it look like she will. The results from the LP came back showing the virus is getting worse, but not significantly. Since the 2nd med was stopped 3 weeks ago, the fact that it has only progressed this much means the first drug is holding it at bay. Same situation, it won't go away until she has an immune system. What is happening now is that the adult match they would like to get is being contacted, then if it's a go, then current testing will occur, 5 days of the prep, then collection, then Kelsey will get 4 days of wipeout chemo, then the cells. If it is fact going to be 2 weeks until she gets cells, then she will get more of the 2nd med to continue to treat the brain virus and the granulocyte transfusions. It was a tough day of news. News that wasn't shocking, but news that puts a frown on my face. Do I just keep hoping each day that this is the day she will be healed, or do I just not expect anything to keep from feeling down? I think that sometimes living in just that day is not having any expectations at all. Just live that day to His glory. Thinking ahead to healed or not healed is just too far ahead right now. Any thoughts? Anyway, it has been a tough day for me, for her, her temp has been down to 35, and it has been awhile since it was that low, actually Jan. 2. When this happens she loses all things normal. She is extremely confused. I have a few more things to do for her, then I'm off to rest. Thank you for praying and standing with us during this huge bump in time.
Love,
Mom

Day 69

2011-01-12T12:50:00.005-05:00

Some of you have inquired about how to get tested to see if you could be the match for Kelsey. You could specifically go through a private company to do this, but it is a bit pricey say around $150-200?, I'm not sure. You can always join the Be The Match registry online by going to join now. They will send you a swab kit. But, just so you know, it is not timely for you to be her match because it takes about 1 month for you to hit the list. However, you still could be a match for someone, so I would encourage you to do it.

Kelsey's fungal infection in the sinus tissue is pretty serious, especially so close to the brain. She is currently on 3 fungal drugs. She will be getting a granulocyte transfusion 2-3 times a week for 2-3 weeks. A granulocyte donor has to already be in an existing protocol that allows for this type of collection. Since I am in a protocol, they are checking to see if I can donate. It is risky in that the donor hasn't been tested just prior to donating. The donor will be tested, but results come after the host receives the cells. They are tested every month because it is a requirement and although the risk it reduced, it is a risk that we have been made aware of. Things could have happened or the donor could have been exposed to something within that 30 days, then she could get that. We always have a choice, but it is reasonable to think that this is needed if it has been so thought out that it has been presented to us. I know that this is one of those risk vs. benefit procedures. The benefits far out weigh the risk. Such great minds continue to think of everything they can to get her better. For me, everyday is on edge. Outwardly I am remaining calm, but internally I struggle with all that is looming ahead. I get impatient. I get tired of the fight at times, not that anything I do in the bigger realm of this will help, but all that I can do in the realm of that day I do. I get set over the edge emotionally at times when things don't go as well planned as they should especially that hurt her(like temp issues). I want her to be comfortable and secure. For the most part, everything is going pretty well. I weep at little things like a good poem or scripture or story that relates to our current situation. Not really because I'm sad, but mostly because I'm overwhelmed with love and how Great our God is and how great God is for using this story for His glory. When I received a bunch of this not-so-good news on Monday, I was saddened again. Then, I received 3 messages from Facebook that made my day. I know that my "longsuffering" as it was put is so worth it. I had never thought of it as that, but that is a great description. To those of you that share with me these messages, the timing has been perfection. I have to say that this is exactly the love of God through people that ministers to me and makes this longsuffering so worth it. It is this love that makes me weep. It is this love that keeps my focus on the day and gives me more hope. God is so big and continues to awe me.
I was feeding Kelsey some peaches a bit ago when she looked at me and told me that God is teaching me patience. Don't I already know this! This is far more of a challenge that sitting with Karly for 5 months. With her, it always was serious, but each month we had a schedule, then a time when it was suppose to end with a future plan with extremely confident doctors. With Kelsey, it is literally a daily change of events, with an ever-changing plan, with no end to this, with doctors who are confidently working on it with great hopes after sitting on death's door with a God who gave us a miracle to be where we are right now. Praising God all the time for just being here. Praising God for the miracles we've seen. Praising God for all of you. Thanking God for every day. Kelsey is amazingly strong that she keeps fighting every day. She can still smile the cutest smile. She is Kelsey! As she would say, "God is good all the time."
Love,
Mom

Day 68

2011-01-11T20:23:00.003-05:00

The hunt for an adult donor is back underway. The problem is that we still have not found a good match for Kelsey. As research continues the human leukocyte antigen matching has gotten better. There are specific HLA's that we all have, the closer we can match Kelsey's HLA's with a donor's HLA's the less graft vs. host disease which can be deadly.
An ideal antigen match, known as a "clinical match," means that both sets of the "most important" inherited human leukocyte antigens in the donor match perfectly with those on the body (and immune) cells in the patient. The host needs enough matched antigens so the current immune systems doesn't attack it. The immune system of the patient, who is called a host, senses that these antigens are "unmatched" or "non-self." This prompts the patient's immune cells to attack the donated (transplanted) cells, which are called a graft, and this assault can lead to the patient's rejection of the transplant ("host vs. graft").

More often, though, some mature donor immune cells that are mixed in among the transplanted blood stem cells recognize the antigens on the patient's body cells (host) as "non-self." This causes the transplant to attack the patient's tissues and organs. The result is "graft vs. host" disease, which can be very serious.

Today was a stressful day in terms of being out of her toasty room and warmer at two appointments back to back. She had CT's of head, chest, abdomen, then the LP after 9 units of platelets since last night. Both went well. By the time we got her back to her room, her temp had dropped but came back quickly. She also had follow-up from the sinus surgery where about 80% of the clots and packing were removed and sucked up. This will continue on Thursday until he can see the sinus floor again. She did very well and slept a lot after all of that. I was in the LP with Kelsey so didn't get to say good-bye to Carmel and Karly. I missed that, but was relieved that their flight happened and they returned safely back to Indiana. Karly's appts. went well. She had another good cancer check-up...Praise God! It was so good to see her and have Carmel here to help with that. I had to travel back and forth between the two rooms when doctors showed up. Carmel traded with me, and it all worked out. She most likely will return in 3 weeks because she gets too tired if we wait 4 weeks. Joanna is doing so great and what a huge blessing she is to have here. It really makes a difference in my sleep and state of mind. Kelsey actually thinks she has a nursing degree. I have no idea what God will provide in a week. In fact, I was telling Joanna tonight that at the very least she is certainly prepping the night shift as to what Kelsey needs at night. I pray, "And my God will meet all my needs according to his glorious riches in Christ Jesus".

Love,

Mom

Day 67

2011-01-10T17:52:00.002-05:00

Things are so complicated with Kelsey. As it turns out the fungus found growing in her sinus is invasive, but just don't know how invasive. The other fungal drug was added so now we're waiting to see the response. Because it is invasive it is extremely dangerous in this extreme neutropenic state. It sounds like she will be getting a granulocyte transfusion. I don't know how complicated this really is, but know a good match is needed. Because of her added resistant bacteria an antibiotic was started last week which may or may not have caused the little white blood cell number we saw to lower. This drug is being changed with hopes that we may see that number increase. With her seemingly more confused state, an LP needs to be done to really determine if this is truly a worsening of the brain virus or just a side effect of the many drugs she's on. The hunt for another donor is under way. So far an unrelated donor is available, but doesn't match as much as they would like. This may be our only choice soon which causes great concern. The plus is that she could get an immune system within a couple of weeks, but then the risk for GVHD is increased. Then we are back to balancing every drug to match the greatest benefit vs. risk. Her case is truly very complicated with great minds working overtime on trying to make the best plan. These are the facts of what we are dealing with, but God is the great healer. This is one of those times when you know that He could instantly heal her, but then know that if He doesn't then Kelsey's story is really going to be a good one. All for His Glory!
Love,
Mom

Day 66

2011-01-09T13:18:00.003-05:00

Today's devotional hit the mark with mostly how I'm feeling at this point. First there are many obstacles, so don't be discouraged...never give up. Do not expect the path to be easy. I want this immune system for it seems it would solve so many of Kelsey's issues, but I struggle with knowing that God could and would make this possible, so I have to be patient because His timing of events is sovereign. It is a struggle to keep wanting this and then waiting. The longer we wait, the more we struggle. While I see delay, He sees His will being performed in ways that are not discernible to my eye. What I see as standing still, He sees unfolding. My job is to REST in HIM. He is surely bringing to pass His perfect will in and through this entire situation, and it is doing a unique work in many different lives, as they are touched and affected by the action. I know our God is mighty, and His hand is working a victory!

Love,
Mom

Day 65

2011-01-08T20:48:00.003-05:00

After an impromptu MRI, ENT was called to look at her worsening sinuses. Good news at this point was brain looked same, at least not worse. ENT determined that she had some fungal growth which needed immediate action because she is extremely neutropenic and already on a fungal drug. During surgery, they removed the fungus, some polyps, and cleaned things up. The surgeon determined that the fungus was not invasive. They added another fungal drug for coverage. This was good news. She recovered in ICU last night and most of today. We are now back in 1NW. She remains in pain and stomach is upset. She hasn't eaten today or yesterday. Tomorrow she needs to eat. Joanna is doing such an awesome job with Kelsey, so full of patience and understands the issues she needs to control. I know I feel comfortable;I know Kelsey does too. She wouldn't let me leave if I didn't have someone she knows with her. She gave me the pouty lip tonight when I said I was going to leave so compromised that I would stay until her last pill was taken. She has had to stay under the warmer for much longer periods of the day. I hope and pray that this period of time shortens. I am excited about Karly and Carmel arriving tomorrow night. This will be a different routine, but it will all work out well. Pray for safe travels. Pray for stability. Above all else she really needs the immune system to deal with all these infections...bacterial, fungal, and viral. Sorry for the abrupt ending...but time to go sleep.
Love,
Mom

Day 64

2011-01-07T13:30:00.005-05:00

Joanna held vigil last night. Thank you God. Having new nurses dealing with Kelsey is hard enough, but then add all her weird symptoms that require immediate attention and that makes for a real vigil. This morning an unscheduled trip to ultrasound her kidney had Joanna on her toes to keep her bundled to stay on top of that trip. All in all the day is going well. Love being back on 1NW. Her address is:
NIH
9000 Rockville Pike
Bldg.10/ CRC Room 1NW1648
c/o Kelsey Koch
Bethesda, MD 20892
There have been some subtle mental changes(worse) that have us concerned that the brain virus may be worsening since off the Ganciclovir although not enough to say put her back on it. The next few days will give us some signs, another LP and another MRI will give quantitative data. After gathering some data a decision will be made. What we hope for in the meantime is that the immune system makes a huge jump that can be visibly seen in the lab. Once she has this immune system, it can fight the brain and other viruses without any more harmful drugs. This will put some big smiles on people faces around here.

Words of Wisdom passed on from Joanna's husband Jason,
Colossians 2:1-5 (The Message)
¹ I want you to realize that I continue to work as hard as I know how for you, and also for the Christians over at Laodicea. Not many of you have met me face-to-face, but that doesn't make any difference. Know that I'm on your side, right alongside you. You're not in this alone. ^2-4I want you woven into a tapestry of love, in touch with everything there is to know of God. Then you will have minds confident and at rest, focused on Christ, God's great mystery. All the richest treasures of wisdom and knowledge are embedded in that mystery and nowhere else. And we've been shown the mystery! I'm telling you this because I don't want anyone leading you off on some wild-goose chase, after other so-called mysteries, or "the Secret."
⁵I'm a long way off, true, and you may never lay eyes on me, but believe me, I'm on your side, right beside you. I am delighted to hear of the careful and orderly ways you conduct your affairs, and impressed with the solid substance of your faith in Christ

isn't it amazing how in the grand scope of Christianity that we can become woven together with such a great love for those whom we have never seen. It takes work, it takes time but if we allow ourselves to not just pray but learn about those for whom we pray and truly lift their burdens to the Lord we begin to feel by their side. I remember feeling this as I prayed for the miners trapped in Chile and I find it also when I pray for any of those whom you may request me to pray for. I take great joy in this as well as I know that you do too for we have been woven in the grand tapestry of God.

Thanks Jason. I really appreciated this insight.

Love,
Mom

2011-01-07T08:58:00.002-05:00

Hello again,

Yesterday, one of my dear Monroe Central prayer warriors came in my room and was trying to explain the magnitude of the battle she percieved we were in. She was telling me of her sense of the enemy's strong resistance and how we were to keep up our vigilance and maintain our prayer effort. This was a word that cut timely and deep for both Tammy and myself. We see the stagnation of not having an immune system and how this one thing continues to hold up the progress we want. But yet Kelsey has moved out of ICU and things seem like they are going the right direction. But I believe this word is a battle cry much like McClellan at Antietam. Sensing Lee's weakness but licking his own wounds, he refused to attack that final time and Lee slipped away to fight another day. So I am encouraging you all to continue in this "fight"! We have seen so much positive but I believe, and Sarah confirms, that the battle still rages. We could easily let down and the Lord would not be glorified in this. Thanks so much for the persistant efforts I have heard of and the blessing we have recieved.

One final thought comes to mind here. It must have been rather disheartening to Moses when after the Lord had delivered them in Exodus ch.13, then in ch 14, God told them to "turn back and encamp" which then would allow Pharaoh to harden his heart and pursue them. We must let God be God and follow His plan with obedience. It would be easy to leave God out of this equation once there seems to be some relief from the storm.

Thanks again for all that you are doing and continueing to do.

Dad

Day 63

2011-01-06T21:56:00.003-05:00

After 38 days in the ICU, we have arrived back in a new room on 1NW which is across from the nurse's station. She had a busy day in which she dropped her temp until about 9:45pm. Let's see, I was Alex, Katelyn, and her sister today. These are not great times when she goes so far away from reality. I literally have to stay right next to her to keep the warmer completely over her. She gets fidgety and so unaware. I try to be patient and explain the same things over and over again about why this needs to happen and what her job is to stay still under the warmer. It is so comforting when she returns. She has an aid staying in her room with Joanna tonight, but Joanna is the one that knows what to look for after spending 2 nights with her already. She is also the one that Kelsey will listen to and the one that can comfort her. I am hoping and praying for a peaceful first night back on this floor. We are acclimating. I believe everyone at home is acclimating as well. She's had another resistant bug crop up which is a hitch, but being treated. Doctors still don't know how long to wait on her immune system to re-present. This is the best option. I don't relish the thought of Kelsey's body handling more chemo, etc in order to take on more cord cells. This presents so many tricky issues, it is best not to think about. Best is always God's plan. That is what we want to happen. Being patient is the best option. Pray for patience and wisdom. I just don't know what else to say. Come Lord, More Lord!
Love,
Mom

Day 62

2011-01-05T10:49:00.004-05:00

Joanna arrived safely. Have you ever heard me mention how perfect God's timing is? Kelsey had an awesome night nurse again Monday night which allowed me to rest fairly well. I was waiting to see which night nurse she was going to have Tuesday night. It turned out to be a nurse we have never seen before. I cannot express how grateful I was that Joanna was going to be with her last night. She had a quick lesson in what to watch for throughout the night which is not so easily learned. I think that watching Kelsey in pain with these spasms left her mother's heart wanting to see her out of pain. She did find herself asking for pain medication for her a lot. Kelsey did sleep between spells of pain. Joanna was there to help monitor her temp, hold her hand, get her sips of water when needed, and whatever else Kels needed. I was able to rest. Instead of dreaming about Kelsey, I dreamed about Karly. I will have to call her today to see how she is doing. Karly and Carmel will be traveling Sunday to return here for her cancer scans and antibody refueling. I am looking forward to their arrival. The following is from Joanna's husband. Please remember their sacrifice in meeting our need.

My Dear family here and across the states,

Tonight begins my time without my wife. For two weeks she will be in Washing D.C. taking care of her friend Kelsey. If your interested in reading more about Kelsey and seeing how she is doing and how you can be praying please follow her on this link http://kjkdancingthroughtherain.blogspot.com/ . If you take this challenge to pray here I want you to know that you won't be left unchanged by the witness that this girl is bringing to all those around her. Scripture tells us that we become more like Christ in our sufferings and that we should count it all joy. I know that Kelsey does count this all joy. That doesn't mean it feels good it doesn't mean that tomorrow she will be better, it only means that she has found her peace in becoming like Christ. I pray for her healing and know that she is being taken care of. I hear of her testimony she gives in her lucid moments and can't help but be left in awe at her courage. May I be able to stand as she has in this horrible pain and long-suffering. Please pray for my wife. She has such a sweet heart. I really do love her so and I know that these two weeks will be grueling for her. But I also know how strong she is. For every bit of tender heartedness she has she also has the strength of the Spirit to do far more than anyone could ever imagine. Pray for them hard my brothers and sisters and thank you for all you do. You don't know how much I really enjoy getting to serve with you all and be a part of such a grand body of Christ. Praise God!

in service to Him,
jason

There has been talk about moving Kelsey back to her 1NW room. I feel as though they could handle it especially now. I believe I will be more at ease in our familiar territory, I hope so anyway. God has our perfect plan and timing, so that is what I trust in. Transformation is a good word to describe what we are going through spiritually and physically(for Kelsey). My prayer is, "Holy Spirit, think through me, live through me, love through me." Romans 12:2 is one of our family's life verses: "Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is....His good, pleasing, and perfect will." Another verse we live by is Romans 8: 26-27, "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts know the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will." I absolutely trust that God, himself is perfecting our path; He is interceding through all the saints; He sends what we need when we need it. I still maintain that I do not know what I need while going through this. I like not knowing. I like knowing that it is being provided. I like that when it is provided, it is of God. Then the story is more powerful and gives God all the glory. I like weeping from the joy and love we receive. My heart remains thankful and grateful.
Love,
Mom

Day 60

2011-01-03T22:51:00.003-05:00

Thankful for a good night nurse last night. Had a great day nurse today and another awesome nurse tonight. Praise God. I will get some rest tonight. She had an awesome day today. She ate some good calories today. Worked on the re-timing of some medications which may allow her up more throughout the day without the constant peeing. One of the major medications is detrimental to the kidney so pre and post hydration is heavy for flushing. If this med can be given when she is already in bed it would work out better for her temp and her productivity out of bed. This will take awhile to get it moved, but it is a step in the right direction. Pray for sleep for both of us tonight. Kelsey didn't sleep at all last night which is usual when her temp is low. She needs a great night tonight. We are in a waiting stage for the immune cells to show up and mature. They saw 1 neutrophil the other day. This should mean there are others. Nothing much will change without the immune system. We really need this to happen soon. To be this extremely neutropenic is dangerous and concerning. Joanna will be arriving tomorrow afternoon. This will be a huge blessing. Pray for her family while she is away...God's provision and blessing for her and her family. Pray she adjusts well to this environment. Pray for safety as she travels. Pray for the Holy Spirit's leading. Thank you warriors. Good night.
Love,
Mom

Day 59

2011-01-02T21:48:00.003-05:00

My days have been so occupied with caring for her, I barely have had time to eat. She has to get up and pee every 5 minutes. I don't let her though, so have to talk her out of it for the next 10 minutes. Then, I let her up after 15 minutes, then start all over again. This is how Saturday went for 12 hours. Today, she only lasted out of bed about 5 hours before her temp dropped. Now, I am struggling with the bed pan, keeping a confused Kelsey from trying to get up, or uncover herself. What a handful she is. We have a good nurse tonight. I pray that I can sleep and not worry about what state she will be in by morning. Time to head off to bed because the nurse has pulled her computer into her room for the night vigil. Keep praying warriors.

Day 57

2010-12-31T13:39:00.003-05:00

To God Be The Glory: I haven't totally conquered the art of receiving. I usually take awhile to accept. I may still feel guilty in accepting, but this one is so obviously from God. I knew I must accept. He knows what is and is to come. I am actually excited about this next journey.
The following is a facebook message that I've been given permission to share.

" I was praying for the concerns you gave concerning Kelsey being alone at night yesterday and how you would need sleep as well. I was thinking of how I didn't sleep when my girls were babies not because they wouldn't sleep but I thought they might stop breathing or be smothered. You know, you have been there as well. As we do sometimes, I started wondering if I could come and help in the night times when you need your rest. Then the worries came to me... Who will care for my girls, can we afford it, Jason probably wouldn't think it was a good idea, and lastly, maybe I am not the right person for this. So I laid it aside and thought I could ask Jason what he thought about it later. Well, after I finished grocery shopping today he came to me and asked me the very thing I had been pondering. He even started looking at tickets. We know you might not want this and it would not hurt us a bit if you declined the offer. But please know we want to do this with all our hearts as I know many others probably do. The Lord is good and we trust in him as we know you all do. Much love to you all."

^{Proverbs 18:16} A gift opens the way and ushers the giver into the presence of the great.
Romans 15: ⁵ May the God who gives endurance and encouragement give you the same attitude of mind toward each other that Christ Jesus had, ⁶ so that with one mind and one voice you may glorify the God and Father of our Lord Jesus Christ.
So May our Lord be Glorified!

The first results back from the bone biopsy are not showing juicy cells coming out of the bone marrow. They are in the consideration side of getting more cords for her. I don't know any of the ramifications of doing this other than trying to get cells to give her an immune system. They could still recover also. It is a tough call. One for the experts. Her kidney disease is on the rise and still a huge concern. They have adjusted the dose of the medication for the brain infection. So the big three are still the brain infection, the bone marrow recovery, and the kidney disease. I don't try to keep tract much beyond the big three, although I listen and pay attention to everything. Great wisdom is needed.

Aunties, Uncle Eric, cousins, and Grandma are headed back to the Inn tonight. We will see the New Year in together. This will give them a little head start in their drive back to Indiana on Saturday, also. Looking forward to the evening.

From the Koch's to all of you:
"The Lord bless you and keep you--the Lord make His face shine upon you, and be gracious unto you; the Lord lift up His countenance upon you, and give you peace." Numb. 6:24-26.
Love,
Mom

Day 54

2010-12-28T20:52:00.003-05:00

She finally came out of her low temp state around 4:00 today. The good thing was she wasn't totally "out of it". When I came in this morning she knew me, she was eating, and was more alert. She slept a good amount this afternoon. She has been experiencing some extreme pain related to her bodily functions. They ordered another bed for her which she received tonight. It has air flow on the underside to reduce sweat. She seems to like it so far. Tomorrow is her bone biopsy and another lumbar puncture under sedation. She is not making any white cells yet. Hopefully the bone biopsy will give them some good information about what is happening inside the marrow. Her brain seems to be more alert. She is experiencing so much pain unlike the days she didn't know what was happening. All in all I call this a good day. I slept horrible last night. I had a couple people tell me that I was brought to mind last night. Thank you Jesus for supplying all our needs. It is not that I don't trust the ICU staff although I question them a bunch. It is that Kelsey wants and needs someone with her. I often don't think I dream or remember that I had a dream, but when it comes to Kelsey it is remember-able and not one that I want to remember. Most dreams are not of a happy nature. I see her sitting up abrupt, in pain, or some unknown things happening to her at night which seems to be a pattern. Whenever I leave her for awhile, stuff happens. Please pray for things to stop happening to her when I'm away. She tells me what a horrible night she had or what awful nightmares she had. Pray she can dream more dreams that are positive. Kelsey said that at night the enemy is prowling around her. I believe she is very astute. These things come to mind tonight. Thank you for keeping us uplifted. Amazing things are still happening.

Aunt Angie, Uncle Eric, Nathan, Megan, and Autumn were visitors yesterday. Kelsey enjoyed seeing them It really had been a long time, and she noticed how much they had grown. She had to ask them to leave as one of her belly pain spells was occurring, but thankfully they saw her awake and talking. They took Grandma, Konner, and Kassidy down to Debbie's. They did horse riding today. It was a nice 40 degree day. Uncle Ridge is bringing the girls back here tomorrow. Everyone will be coming back for New Year's Eve, then leaving for Indiana on Saturday morning. We still haven't figured out exactly what we are doing, but are thinking the rest of the family will return to Muncie and college to retain some normality in their lives. If the need arises for them to return, then that is what will happen. We won't decide until we reach that day. Things happen so quickly around here. She remains very complicated. Continue prayer for wisdom and however else the Holy Spirit leads. Thank you Jesus. Thank you warriors.
Love,
Mom

2010-12-27T23:12:00.004-05:00

Hey all,
It's dad here. It's 11:10 at night. About every 10 minutes Kelsey wakes up, pushes down the covers, and wonders where she is and what is going on. The nurse just checked her again, 34.9 degrees Celsius. It is quite crazy trying to re-explain this adventure and the healing she needs. I love to watch her beautiful trusting eyes all night long. When her temp is up, she shows promising signs of rejuvenation in her short term memory. But when she is cold, she really doesn't know anything about what has happened or where she is at. Still she takes it in stride telling the nurses this is crazy etc.
Today has been a day of discovery with the ever changing issues she faces. We deal with each on as we know how and we wait for her immune system to take on some of the load. I try and trust that God will give me the confidence to go home and continue the norm this family needs while mom and her wrestle with the patience of her healing. It is hard to come to grasps with. Please pray for a breakthrough for this. Still holding on to her complete healing with total confidence but timing is so screwy here, now.
Dad

Day 52

2010-12-26T21:38:00.004-05:00

somehow in my deepest thoughts you find me

singing to myself words of importance

listening to and analyzing voices

talking about things i never noticed

silently worrying all my cares away

feeling sorry for myself when there's so much left to say..

you taught me how to breathe

breathe carefree

you taught me how to strive

even though there is suffering

and watching as it gave, gave you all away

you still taught me how to...

strangely in my hardest times you search me

and optimism isn't too far away

smiles and sarcasm fill the air

and your laughter seems to make me stop and stare

silently whispering all my thoughts away

giving into dark when there's so much left to say..

you taught me how to breathe

breathe carefree

and you taught me how to strive

even though there is suffering

and watching as it gave, gave you all away

you still taught me how to...

listen to the music fill your heart

lift your feet to show

sway so soundly to the tempo

raise your arms and just let go

just let go

you taught me how to breathe

breathe carefree

and you taught me how to strive

even though there is suffering

and watching as it gave, gave you all away

you still taught me how to...

you taught me how to live

live carefree, Kelsey

you taught me how to love

even though there is suffering

and watching how it gave, gave you all away

you still taught me how to...

dance through the rain

Deana Kay Gilley

Day 52

2010-12-26T19:20:00.003-05:00

She was on a roll today. Grandma came in this afternoon. She looked at Grandma and out of the blue said that she had seen Grandpa last night. She proceeded to say that he was singing with the Angels. She said that he was happy, very happy. She said he looked good and sounded good. Mom praised the Lord. It was truly an amazing thing to watch Kelsey as she was speaking these things and see the smile on her face. I'm going to have my mom share from her perspective what happened. "When Kelsey said she had seen Grandpa, I first wondered if she remembered he had died and responded 'You saw Grandpa?' She repeated what she had seen and then I told her that it was one year ago today that he died. She didn't know that but I told her it was a message to me from God that she had delivered, and we all shed some tears." Grandma was wanting new memories and this one is one she will never forget. Sometimes she records things to help her remember, but this one is forever imprinted in her mind. Kelsey said that when she was "out of it" last night Jesus had told and shown many things. She said that many of them she couldn't put into words, but that the one about Grandpa was one she could. In fact she didn't share it with me all morning. It wasn't until Grandma walked in that the message was delivered to the one who needed to receive it. The Lord truly works in amazing ways with amazing timing. This story is too good to not repeat, so we are singing praises and want you to share this with us.
Love, Mom

Day 52

2010-12-26T14:34:00.006-05:00

Sunday, December 26th one year ago my father had his home going. Mom is doing very well. Jesus has met her needs emotionally and physically. She is focused on making new memories. Jesus teaches her to live anew everyday. We are nothing less than totally blessed, even after all we have been through. Tyler and Alex had a horrible night watching Kelsey suffer in pain, watch her blood pressure drop, and spike a fever. They are back at the Inn sleeping. Tracy is sleeping after his early morning trip to the airport to pick up Zach. Grandma is going to clean up our rooms a bit and help kids find leftovers. It is not unexpected that Kelsey would get another bout of sepsis while being extremely neutropenic. Blood cultures and big dog antibiotics were immediately administered. She is responding. The midline pic may be pulled because she has been complaining of pain in that arm, the line isn't currently being used, and she is not using her arm to eat and drink with. These seem to be good signs to get it pulled and the possible source of the enemy. The ultrasound of the arm is being analyzed. It is a very quiet day in her room today. We have talked. She seems very alert today. She knows that God is using her story for His glory. She said that He will heal her one way or the other. I asked her what she meant by that. She said, "You know...He will heal me to carry on my story on earth or take me home and still my story will impact people." Then in her very Kelsey way she said, "You will be sad, but I will be happy with Jesus." She said that it wasn't about us. She sure has got it together in the way that matters. She continues to amaze people who take care of her. She really is a blessing to take care. I am so proud of her.

We are 1 week away from everyone going home. This concerns me in that no one will be around to stay with her at night. This causes me much unrest at night. I also know that the ones who leave will have concern not having as much day to day insight into her situation. Please pray in these areas. Continue praying for her complete healing. Today I felt a bit mentally tired of the roller coaster. It weighed on me today. Pray for strength and stamina to finish this race. May God be glorified through it all.

By the way, this pic of Tyler was just too funny to not share. Trent had the same look, but he's on video. Use your imagination. Those boys are so funny.

Merry Christmas and Blessed Times!
Love,
Mom

Day 50

2010-12-24T20:18:00.003-05:00

Christmas Eve. Kelsey had a stable temp night. She was coughing a bit this morning which caused her to throw up a little. She is getting 2 units of blood. She is getting a double dose of GSF which is suppose to boost her absolute neutrophils, but it isn't. She is very neutropenic. She doesn't have much of an appetite, so this is very hard to get her to eat. I tried some of her favorites, but they just don't taste good to her. Everything sticks in her mouth. So far she's eaten diced peaches and jello, but not a ton of calories there. She's been tired, but aware. Her catheter is causing her difficulty, and she talks about it all day long. It has to be there not just because she's not mobile, but also because of the bladder virus. We got her out of bed briefly today so she could stretch and take a few steps. She maintained her temp. She is having a lot of pain in her cath area, so taking some pain and numbing medication. I pray for a restful and uneventful night for her and Alex.

Tracy did the morning shift until he went to the Blood Bank. Tyler and Konner took the next shift. I was able to spend the morning getting ready for Christmas Day for the family. Tracy spent 80 minutes donating platelets today. It is an apheresis process, so out one arm through the machine to extract the platelets, then returned in the other arm. He did great and received his t-shirt. He won't know his typing until Monday. Tonight we had a very nice dinner at the Inn, carolers, then Santa by the fireplace. Santa came by to see Kelsey, but she was in a great deal of pain, so that didn't work out. There are very thoughtful people who take care of those staying at the Inn, and do an awesome job of making sure there is a Christmas for all the kids and their families. We are thankful. On Christmas Day a brunch is served at 10:00, Santa comes again by the fireplace, then Debbie and family will come up, a dinner is served at 3:30. We will all be coming over to Kelsey's room throughout the day, so pray the staff isn't bothered by our numbers that day. They have limited the visitors to a number not conducive to our family size. We are doing our best to stay within these limits, but hey, it's Christmas and that is a family day full of togetherness.

Please pray our family as we deal with the loss of my father last Dec. 26th. I was talking with my sister, Angie, tonight about how to honor him and his legacy. For her and those that spent that time with him in those last days I feel it's tougher for them than me. I didn't see what was lost. I don't have those memories of him. We are making new memories. We want to create new memories with Grandma and still honor him. Pray for all of us as we may have different needs or thoughts on how that might look. I pray that we sense Jesus in everything we say and do and that Grandma will feel the love that is surrounding her during these days.
Blessed to be followers of Jesus.
Blessed to have the family we have.
Blessed to have the friends we have.
Blessed to be where we are.
Blessed to be.
Love,
Mom

A Daddy post

2010-12-23T22:42:00.003-05:00

I just had to discuss just how wonderful the Lord is during our latest Maryland nightmare. I could say so much about the uncertainty, the fear, the stress, the challenge and the confusion on my part. But then I would have to mention the instigator of those areas. Let me instead tell you about the Lord's grace and peace.

The first day I arrived here, my prayer was "show me what I was to see." I saw a gasping struggling daughter struggling for her life against a pretty scary unknown situation. But immediately upon my arrival, the consistency of her failing began to show signs of God's relief I can only portray as miraculous. So as we viewed small successes overrun with massive attacks, I began to pray that God would daily show me some sort of progress. I tell you, it is incredible just how specific God answers prayer. First one thing would stabilize, then another, and as new issues would materialize, still little blessing would speak to my spirit. Signs of breathing stabilization, clear conversations with Kelsey when none of the doctors could find her coherent. Little short term memory victories.
Oh, this battle is not yet over, but my how there seems to be hope in so many places that I struggled to understand how she could possible survive and then following those times, how will she ever have a valid life, and then just how would she ever return to her normal abilities. As I continue to believe that we have a God of healing and restoration, please understand that my confidence in God's ability never failed but now I have been bolstered into a new hope that my hopes and my desires are truly His. Please keep agreeing with me that our God can rock any world situation and does indeed meet all of our needs according to the riches in His glory.
Dad

Day 49

2010-12-23T20:59:00.002-05:00

Today more platelets came into the Blood Bank, so she had the lumbar puncture today. It won't get analyzed until Monday. The MRI will be done again, but I'm not sure when. It depends on her body temp. It hasn't recovered from yesterday afternoon. This is unusual. It generally recovers after 12 hours. Granted she has had a lot done to her, and the lower the temp, the more she sweats, the more she has to be changed, the more she is uncovered. She is losing a bunch of fluid from the sweating. Her sodium has been too high for a longer period of time also. She is more confused and forgetful in this state. Between Tracy, Alex, and I we have been able to get enough calories in her. Last night during her totally awake night, Alex had is hands full. She had to be talked to all night, explained to over and over again, and he was very close to her face. She said, "Get out of my face, Tyler." He argued that he wasn't Tyler. Then he asked her why she thought he was Tyler. She said that he was bothering her. This would be normal. Tyler is the antagonist. Then, he asked her where Alex was. She said probably at home or most likely working. He got out his driver's license, showed her, then it was like oh, ok. Poor Alex. It is really hard when she is like this, but she recovers. While I am writing this, her temp just hit normal. Now the vigil becomes even more critical to maintain it. They stopped the viral drug today. If there was any question yesterday, it became clear today. She went neutropenic meaning she doesn't have the immune system to fight off anything else. It currently cannot help with any virus or bacteria issues. They believe it will recover, but that it will take at least a week maybe more. During this time, it is a huge prayer request that the first viral drug she was put on, kick in to finish the job. By itself, for the 1st week it wasn't working on the spinal fluid and brain, only the blood. Now, the hope is that it has had enough help from the other one to work. Typically it works by itself as shown on other patients. But, hey when was Kelsey ever normal medically. She still is throwing all kinds of unknowns into her scenario. This is a very nervous time for the doctors and us too. They say that we will notice clinically if she worsens. Pray we do not see this at all. Pray that by Monday we still see improvement. Pray nothing else happens to her during this neutropenic time. Pray, Pray, Pray without ceasing. Pray that we have turned the corner for all things to become new. We found out today that one of her doctors is B+, so she went in to give platelets. Tracy has an appt. tomorrow to see if he matches her. He has a 25% chance of being B+. He is giving anyway, so a big chunk of his afternoon is spoken for. We were blessed with an extra room for a few nights. This is needed and welcomed. It wasn't anything either of us was worried about, and things always work out for the good. So, those of you that were praying unbeknownst to us, it has been answered. Praise God!

Karly had to say good-bye to Zach tonight, but only for 3 nights. They were so funny yesterday. They got ahold of my hair flattener. This is what teenagers with too much time on their hands do. They both came to dinner with straightened hair. They went over and showed Kelsey who approved. The jury is out with me. Zach was pulling it off pretty well, but I'm not sure about Karly. How did my girls end up with such awesome guys? Praise God!

All the family members are finding things to do everyday. The girls did cookie decorating today. I was able to go back to the Inn a little earlier than usual last night and snuggled with Kassidy while watching Santa Claus 3. That was relaxing. I'm looking forward to just having a break while Alex is holding the night shift, Tracy the early morning shift, and then I can loiter in when I wake up. This will all change on January 3, so I'll take it when I can. Pray that by January 2, the family can return to Muncie and feel peace in leaving. This will be extremely difficult for them... for me, too. So many things to pray about. Thanks for lifting us up.
Love,
Mom

Day 48

2010-12-21T23:52:00.005-05:00

The kids made gingerbread houses. As I understand it, the boys' house collapsed. Funny, how the engineers of the group couldn't execute something magnificent. Karly and Zach's house is on the right. Konner, Kassidy, and Anna's house is on the left. Aunt Joanne and Grandma made spaghetti dinner last night. It is such a blessing to have Grandma around. She takes care of the food, laundry, and cares for the kids. She is my mommy, so she's a comfort also. Alan and Joanne took Konner back to Debbie's for two nights. They are all doing "horse". Konner has finally gotten comfortable with a horse called "Midnight". They will back up here tomorrow.

Kelsey was bleeding from several areas today, the blood bank didn't have any more platelets for her, so doing the lumbar puncture was postponed. She was given benadryl a couple times today which didn't allow for good food consumption; it made her tired. Her stomach has been hurting also. We have been fighting with the lower body temp since this afternoon. When her temp drops so does her mental abilities and reasoning. For the last several days the doctors have been watching her transplant numbers drop without much of a boost from anything. They knew that when they added the toxic drug to treat the brain virus this would most likely happen. It has been such a touchy deal to treat her. This is the drug that was started on the Monday before there wasn't much hope given by the doctors on Tuesday. They believe that since we saw an early response from it, it was the combination that has been improving her brain virus. The hope is that once this drug is removed, the first drug will continue to treat the virus, the lymphocytes and other transplant issues will be able to recover. This is critical for two reasons: there are no more cells available to add to her system that would match & if she doesn't continue to improve on just the one viral drug, they would add the other back and this wouldn't be good. It would really get complicated. The first virus-treating drug has yucky effects also, but they are better yucky than the other one. Need more prayers, more healing, more Lord. She is fighting. She is strong. For being in bed for 3 weeks, she is doing well with her legs and arms. Sometimes it gets fuzzy just knowing what to think. Did you all follow all of that? It is a conscious choice to live only in the day. I pray for you to be able to live fully in His presence each day. Kelsey still mostly knows where she is and still says that she wouldn't be any other place(if you have to be sick). She still knows that this place has given her a chance for the life she dreams of. Rejoice and be glad in it(all of it)!
Love,
Mom

Day 47

2010-12-21T23:11:00.004-05:00

Today was a good day. Good because we had a Kelsey who talked, ate, did her therapies, and was as sweet as could be. The body temp remained constant all night and all day. We added a beanie and footies which probably helped. She was out of bed on her feet for about 10 minutes. She stretched and did 3 plies(Ballet term). The nurse heated up a few towels and robes which we applied to her back side. She only lost .3 degrees instead of 3 degrees. The IV feeding was stopped, and we were given a normal diet to work within. I'm not sure how we did, but I feel as though we pushed as hard as we could to get the calories in. She did meet the water intake. If we can continue days like this, she could soon make it back to her other room. She has her lumbar puncture tomorrow. Again, this will let us know the viral load in her spinal fluid and how well the medicine is working. There are some good theories about her body temp, sodium, glucose, electrolytes, and blood pressure. The best way to confirm this will be to get a PET scan. This can only occur when her sugar water is eliminated. This would be helpful information, so please pray for wisdom and guidance in this area. Alex arrived safely and is now going to be holding the night time vigil. Tracy is glad to be sleeping in a bed at night. They changed sleep chairs on him last night...it didn't lock in position which isn't safe for ICU patients so it was sent for repair. Boy, he didn't like the one they brought him because it wouldn't lay down enough. One of the doctors came in today and made a comment about how far we've come in the last 2 weeks. He said that it is hard to believe that 2 weeks ago they thought she was going to die. He also commented on the one other person who he personally saw recover from this(who wasn't near as bad as Kelsey). He said a year out he is still recovering, and it is a longggg process. We are not taken aback by this. Kelsey has always taken a long time to recover from anything. Plus, we are hopeful that God is not done, His timing is perfect, His healing will be complete. We will continue on this journey all of our lives. "Trust in Me with all your heart and mind, and do not lean on your own understanding. In all your ways know, recognize, and acknowledge Him, and He will direct and make straight your path." Proverbs 3:5-6

Love,
Mom

Day 46 pm

2010-12-20T21:35:00.006-05:00

The crew is home. Looks like they had a happy time. Kassidy's favorite was the trains that circled under and around the tree. Anna's favorite was one of the awesomely decorated houses in a neighborhood they drove through. Konner's favorite was the White House. Tracy's favorite part was the man who was using several trash cans as a drum set. Figures it would have something to do with music. I haven't talked with Karly and Zach but my guess from the look of it was they just enjoyed being together.

Have a peaceful evening; the Koch's are!
Love,
Mom

Day 46

2010-12-20T17:41:00.002-05:00

Kelsey was doing so well yesterday. This morning the overnight nurse who had her until 7:00am got her out of bed. She hadn't seen her for awhile and was so happy to see her doing so well and thought this was a good idea. This in itself may have not been the issue, but in combination with the bedside potty and how weak she is, it totally drained her physically and lost her body temp. By the time I saw her this morning, she didn't even recognize me. She could barely talk. Her body temp had gotten to 90 degrees Fahrenheit. I finally had them get her back into bed with the body warmer, and it has taken all day to warm her to 95 degrees. She recognizes us now. She can eat again, but it was totally frustrating. The day could have been better utilized for her betterment, but this is what we got. In the midst of this, Konner had been down on 1NW, she gave me a message that I should go down and get a massage. This was exactly what I needed. I got to unload some of my frustrations and relax. Praise God! Timing is really everything, and it must be God's timing.

The NIH Clinical Center has a trip to the National Christmas Tree tonight. Tracy, Konner, Kassidy, cousin Anna, Karly and Zach are going. I hope that they enjoy the outing and time away. The boys and I are holding vigil in Kelsey's room. Trent gave Kelsey a nice head massage. What good brothers she has!

I didn't do my usual devotional this morning, but Kelsey has a different one in her room. I just happened to pick it up tonight as we are chilling in her room. It is very reflective of the day. It said that when you are feeling sad, Jesus wants you to anticipate feeling joyful again. I had just said today that I can hardly stand feeling the joy and excitement that we experienced yesterday to only have the opposite today. Then I said, ..."maybe I shouldn't get so excited." I don't mean living in sadness. I don't do that. I have a lot of joy...I mean the extremes. It went on to explain how productive pain and struggles can be when you trust in Jesus. I know this to be true. But then it said it is like when a woman is going through labor pains and wondering when it will end, then the end result is a newborn baby. Kelsey was very much like a newborn today...all bundled up, smiling, and looking so adorable. Trent was telling her how she was like a cute baby all day. So no matter what is happening on earth, there is boundless joy in His presence. It sure does put perspective back in my day.
Love,
Mom

Day 45

2010-12-19T14:23:00.003-05:00

Tracy text me this morning and said, "Praise God, an uneventful night." Then I heard that Uncle Alan had gotten her to remember her new blood type even after she slept and woke up. She remembered that Aunt Joanne fed her broccoli last night. These are exciting developments for us. She maintained her body temp all night for the first time. WOW!

This morning I was thinking about all the things I should do to get ready for Christmas, but I don't feel like doing or have the time. Then, I read in the devotional today about not letting the clutter weigh me down. Fortunately, when I am with her the clutter disappears, and I can focus on her. I can look at her and see the Christmas Miracle occurring. These are the important things right now.

This week will be about maintaining a stable Kelsey and then seeing more of the little things get better like being able to get out of bed, walk, get the catheter out so she can pee on her own. She wants to be able to do these things, so her will is there. We need to get her body strong enough. Pray we stay on this uphill trend.

Love,
Mom

Day 44

2010-12-18T22:24:00.004-05:00

Last night she had a few bumps with a reaction to the platelets which hasn't happened for about a month. Her eyes and lips swelled. Her feet itched. They think that her new immune system may have recognized part of the platelets as foreign. They have made a plan for the next time. Fortunately, Tracy was spending the night and noticed it. Of course her body temp is hard to keep steady. It seems as though we spend all day trying to get it back to normal after it drops at night. But,the good news is that we are able to get it back to normal. She had some good awake times today. She ate some broccoli with margarine, baby food peaches and pears, and 1 chicken finger. She is so much fun, and she purposely kids around with us. I cannot tell you how many nicknames she has given Tyler, but this is typical, and they all make us laugh. Her Aunt Debbie and cousin Deana came yesterday with cousin Hannah's prayer journal. Debbie read this entry to her. She remains aware of all things pertaining to Jesus and her faith. Debbie took Konner and Karly back to Hughesville for the weekend. They were going to the play at the theater called "It's a Wonderful Life". Tracy, the boys, and I went shopping for 4 hours. Didn't accomplish much in the traffic, but did OK. Grandma and Kassidy stayed with Kelsey. Karly's beau, Zach, flew in today. Tracy picked him up from the airport. He will be with us till Thursday, then back again after Christmas for awhile. Alex returns on Tuesday until Jan.2. My brother and family drove from Indiana today. They were able to have a very good visit with Kelsey this evening. It is always hit or miss catching her awake AND talkative, so I was so happy they saw the fun Kelsey. It is so hard to prepare for Christmas here and get organized with so little space and little time. However, it will be just what it needs to be, so no worries. The kids understand.

The devotional today was so awesomely perfect. It spoke about a persistent problem that should be viewed as a rich opportunity. A year ago that is exactly what I used the time for. An opportunity for so many things...learning, growing, relationship building, trusting, greater faith, less control, and contentment in the situation. I became more thankful and believe it or not grateful not for the cancer but for the situation. The problem had no power over us and our thankfulness flowed, not only to God but to all of you. Our hearts were opened wider. It forever changed the relationships between each family member. When Sharyll posted about what does a cancer patient wish for it is true "to be well". This year finds me stronger facing more of the same, but feeling as though I've actually learned a few things from last year. People seem to think that it must be awful to be here away from home. Actually, it is quite an awesome place. It feels like a place of refuge at the Inn. I have learned most of the ropes here, know a lot of people who make me feel at ease, I can be myself, and really don't want for anything(except to get her well). I sorta know how to get to places if I need to. Thank goodness I have this laptop from last year. I use it everyday to keep in touch with family, friends, for bills, maps, medical terms, diseases, movies, and more. It is a blessing. Mom has been a huge blessing. Without her, I would probably be a bit frustrated and tired. I only want to be here with Kelsey. I am so glad that Tracy spends the night. It helps me rest a lot easier. We are still seeing gains with her brain. I would call today a good day because they were able to keep her steady for much of the day. She remains so sweet and occasionally that sassy girl comes out too. So much fun!
It is late, and hubby wants to sleep, so I'm off to the Inn for night.
Love,
Mom

Day 43

2010-12-17T13:06:00.004-05:00

This is the fun poster that was made by a relative of one of her favorite staff. It is a great focal point for Kelsey, but even more importantly is that the people that don't know her can get a glimpse of her personality and what she likes. It has been without a doubt a perfect way to represent her while she's not herself.
Everyday we see such horrible things happening to her. There is not anything we can do. We advocate for her all day and night long. Her doctors and nurses are awesome. We were able to keep her body temp stable for 12 hours, then wham it dropped 3 degrees this morning. We haven't been able to increase it again yet. This is miserable. Her blood pressure has been steadily increasing without much help from a multitude of drugs. Currently they are trying to place an "A" line which is an intra-arterial line to keep a constant check on her blood pressure. They are putting her on an IV drip, so it will need checked around the clock. The doctor is on her third try to get it to thread, I hate this. Her urine is very bloody for many reasons, but again, trying different methods of stabilizing this other virus and kidney function. The hole in her septum keeps bleeding. ENT is here to check this problem out again. Even though the virus is in one way better, there is so much fallout from the drugs. She is aware of more pain and things around her, so it is probably a good thing she forgets it rather quickly. She is getting some physical & cognitive therapy. She is on a mechanical diet. She still has some very good times of the day where she converses with us. These are the fun moments. Tracy is spending every night with her, and we are here all day. More family coming tomorrow. She really enjoys her family. All the doctors are sometimes overwhelming. She told me yesterday, "I can do this."...and she is with God her Father. I cannot express enough how thankful we are for the prayer support. This is certainly going to be God's handiwork for her to recover.
Love,
Mom

Day 41

2010-12-15T22:45:00.002-05:00

Not much new. Her body temp is still perplexing and causing concern. The doctors have been able to find some case studies that have reported this body temp change as a result of the brain infection. I think that if we left her temp alone it would just stay too low, but we cover her with the heat machine blanket to get it normal and sometimes over shoot it too high. This would indeed be the temp regulatory part of her brain. What is concerning is that she looks better clinically, but then this part of the brain is not acting normal and why now when she seems to be improving. She didn't sleep much last night, therefore slept most of the day today. When she does this, we can't get much done with feeding and therapies. However, she did wake up this evening after a bout with temp too high, horrible belly pain, and body pain. She blasted out a huge amount of "you know what" which was great. Her temp is starting to level out. She ate some baby food, talked with the kids, and Alex on the phone. Tracy plans on spending the night with her again tonight. She had her LP today, so we should have some results from this tomorrow. Her brain MRI is planned for Friday. As always, everyday they have to adjust volumes of meds and types of meds. I would love to see her get some strength in her legs enough to gain the confidence of her therapists. This would be a huge gain and one that would make it easier to move back to her peds floor. Continue to pray for wisdom through all of this.
Gotta go sleep.
Love,
Mom

Day 40

2010-12-14T15:27:00.006-05:00

Her body temp has fallen to 93 degrees. There are a number of possible reasons for this. The best one for now is the brain infection. She remains under a bubble type pad that inflates with warm air, then is covered with warm blankets. She has asked better questions today, noticed when everyone is gone opposed to everyone watching her, and has enjoyed her baby and pureed foods. Although we don't know everything going on with her medically, we feel as though mentally she is making progress. They will be repeating the Lumbar Puncture and brain MRI later this week. We don't think we will see much, but the trend going down would be encouraging. Still asking for a miracle. Still seeing something that doctors couldn't predict, still have much faith, trust, and hope for her future.

The Children's Inn continues to be a place of refuge for us. We can be together for meals. There are so many cool activities for the kids. They did cupcake decorating one night before dinner was served. They have seen Santa several times. But, hey, they are kids and need to have their minds taken off of the serious stuff. They saw a mini version of the Nutcracker at the Inn, some are getting to go to the Redskins Stadium for a behind the scenes tour and lunch, others are just enjoying Rock Band & Build-a-Bear activities. Karly is getting most of her health appointments this week, so she will be refueled for 3 weeks. Grandma is still a huge help. I am sure she is getting her exercise between the walks to and from the hospital, trying to find the little girls, fixing meals, laundry, and whatever else she sees that needs done.

People from the Inn, our doctors and ICU nurses, nurses from 1NW, family, and friends from home are doing everything to keep us sustained. We appreciate it all. We certainly feel the prays and feel loved. It really chokes me up sometimes. A great big thank you from a grateful family!

Love,
Mom

Day 39

2010-12-13T16:02:00.002-05:00

Today is about the same, although she has graduated to pureed foods like baby food and applesauce. She is also doing a bit of arguing about getting out of bed to potty. She thinks this is bull. These are good signs, I think. One of the nurses sister's made her an awesome poster of her life since high school. It now hangs on her wall in clear view for Kelsey to see. Everything else is a battle with maintaining her body. My thoughts today brought me to why we decided to go forward with the transplant. There were no good options because Dock 8 is a deadly disease. Kelsey hadn't been living a life other than just being alive. She knew without doubt that this transplant would give her a chance to live a more normal life. I cannot imagine that God would let her quality of life be worse than when we started. We all realize that this is possible, but are still standing on a miracle. We do not even try to imagine what this will look like, but are holding on to our hope. As for the future with Karly, the transplant is still our only option, for now. Much discussion and further planning will go on before we start this, and we will wait on God's timing and peace. The ultimate match is still what we are looking for. Cord blood is still available for her, but a match would be so much better. Please pray for these areas as well. Meanwhile, we are working to keep Karly stable in all aspects. There is not any doubt that this scares her, but she is as strong as Kelsey in faith and trust in God. Please, O please continue to pray. Alex left today so please pray for him during his travels and for peace as he is away from Kelsey. I cannot stand to be away for long, so I know it will be tough for him. Kelsey needs each area of her body touched by healing. We are rejoicing in the miracle we have seen so far. We ask for more every day.
Love,
Mom

Day 37(12-11-10) & Day 38

2010-12-12T13:25:00.007-05:00

On Saturday, Tracy, Konner, and Kassidy took off from Dulles on United Airlines and arrived at the North Pole:) They had fun seeing Santa, making crafts, and eating.
Kelsey had a CT of her lungs Sat. morning. It looked better than on Friday, so everyone felt better over the weekend. This and the bladder virus will be added to those things that need watched. Kelsey slept much of the day until 4:00, then was up and wanted to eat so I fed her chicken broth and strawberry jello(Alex took over the jello feeding so I could go eat). She slept again until 11:00pm, and this time when she woke up she was initiating her will. Alex stayed all night. Kelsey wanted to get out of bed to potty. He had to explain over and over again that she couldn't get up to potty & she couldn't get out of bed. She said it was gross to potty in bed. This is a good sign though. She slept some last night, but has been up much today. She asked to eat so had chicken broth and jello again. Every time it tastes good. Aunt Debbie, Hannah, Rachel, and Deana have come to visit today. Hannah shared a story about her prayer journal. I love having family around. Steph(she's family) left this morning and again I say a great big thank you to her and for her obedience in coming(For Pam and Tim also). Even though she thought she was coming to give me a break, and it didn't look like what she thought she was coming for, her stay here was just what God had in mind. I am thankful and grateful for the role she played during this crisis time. Grandma has been invaluable also. She takes cares of the comings and goings of the girls, makes the boys bed(they don't care but I'm sure housekeeping likes it), cooks and cleans, went shopping for groceries and just whatever comes up, she does. I just keep taking care of my girl and being with her. With so many mouths here and a tightly cramped room, I appreciate orderliness, tidiness, and eating without the cooking and cleaning. We are still walking through so many unknowns, but we have faith and trust in our Lord. I cannot look to the future or imagine what it would be like for I am not equipped for that. I try to stay in the day as always. Thank you and you all know who I mean for all the blessings you are sending our way.
Love,
Mom

Day 36

2010-12-10T19:58:00.002-05:00

Let's just start with the jumping up and down good news! We got the results of the lumbar puncture showing significant reduction in the white blood cells. This confirms what we are seeing in Kelsey's respiratory and heart rates. When they gave us this news it was tainted with the news that they are seeing something new in the lungs, however, it still needs to be confirmed. They are going to repeat the CT scan tomorrow. If it looks the same as today, they are going to do a bronchoscopy. This makes everyone a bit nervous, because it means anesthetic. The MRI is holding steady...no new disease. We are getting our miracle! We have so many hurdles and such a long road ahead of us. She is still so critical and weak and sick, but we are headed in the right direction. The drugs she's on have such great risks, and her condition is rocky. Her organs, bowels, kidney, pancreas, liver, lungs, brain are all in some state of being not normal. The main goal right now is to keep the course. The brain is still the #1 concern. All other concerns are falling in the wake, but not being ignored. For instance, we have recommendations for the bowel issue. She is at risk now for a rupture. We pray that the easy fixes will work. So for all the above areas mentioned, pray for normalcy to return without any complicated drugs, tubes, surgeries, etc. Pray for all cells damaged during this infection be restored. We still need a miracle. Now, I just found out she has some bladder virus? I'm not sure what this is. Waiting for the doctor to come in and explain it to me. OK, he stopped in and for now it is another thing to just watch. WOW! I was saying to Tracy during dinner(by the way Steph made another good meal for us tonight)(What a blessing!) that what I would like to see when I walk over tomorrow is a complete full blown healing. Kelsey perfectly normal. We just can't get too overwhelmed with all of this. We are still living one day at a time. There was a puzzle started in the family room just outside Kelsey's room which has now been completed. Every time the boys get kicked out of her room for whatever reason, they head to the family room. They just got another 1000 piece puzzle to start tomorrow. Steph is making good headway on her next knitting project. We had two visitors today. Kelsey's Uncle Ridge was at Navy Medical today so crossed the street to say hello. A long time friend Rebecca Ewert who is going to school just a couple metro stops from here came by. It is always good for her to have visitors. It really was fun to catch up. The boys want the computer to watch a video series Steph brought, so I'm signing off for now.
Love,
Mom

Day 36 am

2010-12-10T10:49:00.002-05:00

She is still breathing easier & easier to wake up. She is still very critical, however, we are encouraged that these new signs are showing an improvement in her condition. The lumbar puncture is over, so we should have results back by the end of the day. The MRI of brain is this afternoon and should have results for that by the end of the day. As always, giving platelets, blood, insulin, blood pressure med, seizure med, GSF shots, hydration, and electrolytes as needed...constant adjusting going on to keep everything stable. All the big dog drugs are on board. Carefully watching all organs; bowels are posing a bit of a problem so everyone is discussing what can safely be done not to rock her condition. She had a persistent area of pain yesterday, so if we signs that it is bothering her today, then more scans will be done. The waiting is really tiring. It is like hurry up God, but don't we know that God uses every situation to teach and train us. The devotional today was just what I needed to hear for me today. It is very cool that each word of God is useful to us individually in our own circumstance. It is everything to know that He cares and loves us. We feel cared for and loved each day. I am confident that this is His plan. May we walk in faith and trust all through this day.
Love,
Mom

Day 35 pm

2010-12-09T21:50:00.005-05:00

Everyone but Tracy and Alex went back to the Inn for a Holiday Party & Cookie Decorating. It was nice to sit down and be waited on for dinner by the Children's Inn Board prepared by the NIH Fellows with staff helping as well. We gathered up plenty of food for the boys to take to the hospital. As you can tell by the picture, dessert was gingerbread cookies with the creating taking place by us. Karly, hands down, was the best cookie decorator. Even though she cannot eat the cookie she took it and created a delicious specimen for her dad. Trent, on the other hand, planned on dumping as much icing on the cookie and then give it to dad to eat. He said let you all decide. She has been sleeping since we've come back. She had been feeling some pain in her right rib/liver area today and then tonight. They gave her some dilaudid. This is of concern because she hasn't had pain since we've been in the ICU, at least not any she had complained about. I'm sure there will be more investigating tomorrow. I pray for a peaceful, restful night. I pray that we may find Jesus in everything tomorrow.
Love,
Mom

Day 35

2010-12-09T17:01:00.002-05:00

Stephanie stayed all night with Kelsey. Kelsey was up from 4-8am. Tracy made it over around 7:00 and was able to talk with her. Around 10:30 Neurology came by and woke her up. She was up around 2 hours again. This was a good time for us. She was a bit more vocal. What seems amazing to me today is that her breathing is slower when she is awake. She is really amazing. Doctors seemed pleased that we are holding steady. Again, every day is tentative. Every night, I am not wanting to leave her. I am not sleeping great, but need what I get. This morning, I woke with a start when I saw in my "dream" that her oxygen was dropping. I got up so I could get over to her right away. When I noticed Tracy wasn't in the room, I knew he was with her. That was a relief. I was all in a tizzy about maybe needing to put the breathing tube in, but was reassured by my devotional and then again by a nurse of 40 years that came and visited us this morning that the right thing to do for now is let her be. Today was very uneventful medically but for the family it was great. Tomorrow she has another lumbar puncture and MRI of brain. I'm not sure what I'm feeling. It is going to happen. It will give us some kind of news. I want a miracle!

Having Steph here has been just what God deemed I needed. I told her that I didn't need anything & that I needed to be here with Kelsey, however, just having her here has added so much to each day. It's been great for Kelsey; our conversations have been much more interesting. Kelsey enjoyed listening and adding comments. Now with the family here, she has just found another niche. She cooked lunch for everyone. Tomorrow she has a dinner planned. This is a huge blessing and allows me to spend most of my time with Kelsey. That is what I needed. I know that God is answering so many prayers. I can't even imagine all the different prayers offered up for us, but I know that He is answering them. Our needs are being met. I have answered people when asked what they can do for us during this time by saying, "Just pray and listen to how you are being led." Thank you to all you faithful and obedient brothers and sisters.
Love,
Mom

Day 34

2010-12-08T22:41:00.002-05:00

The family arrived shortly after 4:00. Since Kelsey was getting a breathing treatment which required isolation, we ate at the Inn before seeing her. I cannot tell you what a relief it is for them to ALL be here. It is just awesome to be together. It took several hours before we were able to wake her up. Since then, we enjoyed singing in her room, telling some jokes, and making silly faces at her. She hasn't said more than I Love You which is fine with me. What great words to choose to say. She is great at copying faces and gets tickled at especially Konner. I'm getting ready to leave and ready the rooms for sleeping. Pray for another night without the tube. I don't rest at night with this hanging over us. I just hope that I can sleep enough to not get sick. Everyone is really exhausted so may tonight be restful for us all. May she get through another night. Come Lord! More Lord!
Love,
Mom

Day 34

2010-12-08T09:53:00.003-05:00

I walked in to see her this morning to find no tube in overnight. Yeah! Just need another 5-8 hours where the family can see her so she can talk. Each day we move forward or have a sense of improvement is good for our hearts. Still hoping for a miracle. She is certainly remaining stable today. Breathing is very heavy, but she isn't gasping for air. I had trouble sleeping last night. My eyes are puffy. My head is hurting. I'm sure my body is tense, because the situation is tense. This morning in the shower my mind would wonder to cleaning out her room. I prayed for God to quit letting these negative thoughts intrude into my mind. May my mind be filled with hope and a future. Come Lord! More Lord!
Love,
Mom

Day 33

2010-12-07T14:32:00.003-05:00

Had a very hard meeting with the doctors, but we made a plan that everyone is comfortable with. They will give her a breathing tube when they feel it is necessary. It actually was going to happen right after the meeting then she surprised me and everyone this afternoon. I woke her up right after the meeting. She engaged us, she talked, her eyes were open. We went through the gift box she received today from Brandi and family. The box of stuff was awesome. We went through every item, she approved! I loved everything...perfect stuff! In fact, she picked out the purple nail polish, and Steph painted her toenails. It gives her a focal point when she is awake. I don't know what will happen tonight or tomorrow morning before I get to her room, however, my desire would be for her to make it until tomorrow afternoon without the tube so I could wake her up in time for her family to engage her. We saw a "tiny miracle" today. More Lord! Come Lord! This is not something anyone has seen before. Her infection is extremely rare, the amount of areas infected in her brain are worse than they have ever seen. The recovery for this is not expected to be very good. What a perfect time for a miracle. It would certainly give God the glory. That is where we are at right now. Pray for the family as they see a very sick Kelsey. It will affect them. Praise God that everything just fell into place for everyone to come. Once again, Wabash College, Tyler's school amazed him today. Before he was called or he even read the blog this morning, his professors knew what was going on, contacted the Dean of the school who approached Tyler as he got to class this morning. They told him it was ok to go; they would deal with finals later. I hope Trent had as much success. We will soon be together...maybe 18 hours. Please pray for that miracle. Now is the time! It is crucial to see improvement soon. Thank you for all your prayers and encouragement. As always, we are so thankful.
Love,
Mom

Day 33

2010-12-07T11:07:00.002-05:00

This morning the official MRI read is that the brain infection has spread a lot. It is affecting her frontal lobes now. This is where her personality & movements, among other things originate. One thing they are telling me is that once these cells are destroyed by this type of virus, they're gone. The question becomes can this new drug work fast enough to have a Kelsey. It needs to kills the virus quickly. Will the virus get to the part of the brain that controls her breathing? She may go into a coma, so then what? I've talked with Kelsey best I can and her wishes are to not go on a machine to prolong her life. She does not want a vegetable Kelsey. The miracle has to come now if we are going to get one. It is close to the end by all medical standards. We are still hoping, but weeping is here. Big conference call to Tracy today. Our God is a mighty God. He reigns over all...over Kelsey in all her ways. Oh Lord, we ask for that miracle in your mighty name. Lord, she will come to you without a fight. We have given her to you a long time ago. She is yours. She has always wanted to dance in the heavenlies. The fight isn't ours. My hope is still present. May your will be done.
Love,
Mom

Day 32

2010-12-06T19:51:00.003-05:00

After today's news, Steph and I were eating dinner at the Inn. I asked her, "So what good news did we have today?" It took a minute, but here it is. The doctor told us that as far as her lungs are concerned, she wanted to say it was better. She said that is has only been 48 hours since the last CT, and she really wanted it to be better so she thinks she's seeing it be better. Someone else will have to tell you it is better. They didn't have to intubate her. You might ask how has it come to this. Last night and this morning her breathing is heavier and for longer periods of time. Her shaking has increased. She isn't opening her eyes much. You really need to loudly get her attention. She's not really sleeping all day just looks like she is. She's just laying there shaking & breathing heavily, eyes closed. Besides the CT of the lungs, the head, abdomen, and pelvis were scanned. They found an ileus which is an obstruction of sorts in the intestine. It is part of the GVHD. It could become a problem. She cannot eat or drink because that could make it worse. The hope is that it won't get worse. If worsening occurs, then they would be compelled to start a higher dose of steroids which would not be good for the brain infection treatment. After the scans this morning a lumbar puncture was performed. Because she was worse, the suspicion was the infection was worse. Sure enough, it revealed an increase in the infection in the spinal fluid. The supposition is that the med is not effectively crossing the blood/brain barrier. The other drug which treats this infection has been added. It's side effects are not good. They carefully weighed the benefits and risks. At this point, the main goal is to treat her brain. Basically, I was told that if it means losing a kidney to get Kelsey's brain back, then so be it. We all agree we want her brain back. She had a MRI this afternoon. I haven't heard about it. It's been a lot to process.

As long as I process in my head, I do pretty good. I keep trying to deal with just the day we are in. No what ifs. People ask me how I'm doing. Well it sucks. I use that word because it is a Kelsey word. I totally get all of it and am not in denial. I choose to deal in the now, in our hope, in faith, trust, positive moments. Your encouraging words help me so much. The prayers you send me help me. The visions & the truths you share help me. I thank God for you, our friends, our brothers and sisters in Christ. That is what brings tears to my eyes. How much we are loved. That is what makes me weep.
Love from a grateful mom,
Mom

Day 31

2010-12-05T21:33:00.002-05:00

I was unsure what to say the last couple of days. She remains the same since Friday's seizure. She hasn't said too many words. When she does say something, it is barely audible. She occasionally will smile. She certainly gives puckering lips to smooch. She is shaking, sweating, and breathing heavily. She has been on oxygen since Friday. They took it off today while she was sitting in a chair. She seems to understand what I'm talking about, just won't answer questions. She will nod and get big eyes in response to some things. Medications are being adjusted constantly to maintain status quo. All the teams will be back for rounds tomorrow. She will be getting CT of lungs and MRI of brain to keep an eye on both infections this week. Other than that, who knows. Please pray that every day we get some good news toward her healing.

Stephanie Cullison Stein, a lifelong friend of Kelsey's, came today. I think that as the week passes Steph will be able to help with physical therapy and massage. I also think she will be able to stimulate her brain. I pray that God uses her in a mighty way.

It has been a stable weekend, so Praise God. Tyler celebrated his 21st birthday today. He was able to see Josh McDowell on campus today. I told him that his dad and I saw him when we were in college too. I wonder if that made him feel old. It didn't faze me:)
Thanks to all who made his day special.

The Gingerbread Houses are displayed for the next couple of weeks. Different floors make elaborate houses with a variety of themes. We vote for our favorite. I took pictures of my three favorites for Kelsey to vote on. I will show them to her everyday and make a tally as to her favorite. There were carolers by the display yesterday when I took Kelsey down there in her wheelchair. It is festive here. I love that.

I'm a bit numb, maybe tired so am not really feeling too many emotions right now. Maybe because the weekend was fairly quiet. Please pray for a highly encouraging week full of grace and mercy AND HEALING POWER!
Love,
Mom

Day 29

2010-12-03T17:53:00.002-05:00

It's a wonder I am keeping track of these days. This morning she seemed ok, not exactly normal, but couldn't quite put my finger on it. She could answer questions this morning pretty much accurately, but then forget which is typical. Neuropsych came in to assess her. She didn't know what a pen was which she knew all week. She couldn't write the alphabet; she was a bit erratic with the questions and mood swings. Around 12:30 she had a seizure. She wasn't responding to me. Couldn't answer any questions, just stared. Her personality was a bit too nice, then mean, then nothing. It went prolonged for awhile, then the doctor just gave her atavan to help her relax and stop the seizure. While this was going on, they did another EEG which indeed revealed the activity in the temporal lobe where the infection is. It was a confirmation for them. They had to cath her while she's sleeping. When she wakes up Kelsey my dear will not be happy about this. The fact that she has only slept 2 hours since Monday definitely increases seizure activity. This induced sleeping could be really good for her. They had to take away 1 nausea med(it increases seizure risk), so pray the nausea doesn't return with this reduction. Her kidney is suffering with all of this. The longer she is on the medication to clear the viral brain infection, the more chance of damage to the kidney, but if it can clear quickly, then it could be reversible. Her sodium went on the high side today, so dealing with many issues with this. She on oxygen today. Not quite sure what that is about, but she's having a CT of the chest tomorrow to determine if the lung infection is resolving or increasing. If increasing they're doing a lung biopsy. If resolving, on the correct drug. A blessing is arriving this weekend. Kelsey's long time friend, Stephanie Cullison Stein, who is residing in Idaho is flying in this weekend courtesy of Pam and Tim. Steph will provide some entertainment to her when she wakes up and returns to yesterdays Kelsey. Since she will be on west coast time, she will stay up later than me, so Kelsey can have longer care from someone she knows. Sister Debbie is on her way here and bringing a "feast". I saw some 1NW nurses today who said I looked like I lost weight. I don't think I have, but still thought I could lose some pounds. I'm on the ICU diet.

Had a great devotional today that re-encouraged me. Have to keep remembering I'm in a battle. Thanks for lifting us up in this time of struggles and rejoicing with us in the miracles.

Love,
Mom

Day 28

2010-12-02T17:45:00.002-05:00

It's been 4 weeks since we began this new cell journey. We expected infections and complications just didn't envision all of this. It wouldn't have changed our decision. She wasn't living a life, breathing and being yes, but not living so this was her chance. This is a lot to handle. Fortunately she doesn't know what she is enduring. Me, however, am experiencing a less than hopeful day. She had a CT of her chest this morning which revealed what looks like a nasty fungal infection. It is probably considered the worst one. It isn't confirmed yet. They went ahead today with a triple team of doctors in the OR. First the bone biopsy, then the endoscopy, finished with the bronchoscopy. Maybe more answers tomorrow. Meanwhile started the drug to treat the fungus. I've had these scenes of her dying, then battle them with the vision of her speaking in front of the crowd in a white lab coat. I know that God can heal her and listen to all the hopeful, encouraging words from you all which helps me so much. Today was tough. So you can all hope for me. She has gone 4 days & 3 nights without sleeping. She has finally closed her eyes for going on 15 minutes now. She needs the rest. She has been less perky and bubbly today. They will be starting physical, occupational, and cognitive therapy soon. This will help keep her muscles from atrophying, her hands busy, and her brain exercising. Sister Debbie came today and as always to my rescue on this less than happy day. She came bearing a chocolate milkshake which I have been requesting for awhile, soup, salad, and bread from Panera. It is good for the soul; it has to be. Oh, and a cute little fiberoptic tree which brightens the room, some stuffed Christmas animals(the moose sings), and a chocolate advent calendar. A chocolate and scripture a day must be good for the soul, too. She brought Kelsey the chicken fries she likes, but currently isn't allowed to eat them. She gets one more day, then their mine. (She cannot eat food that is more than a day old.) Friends we've made here have been visiting us. This is encouraging and supportive. That is all I'm good for today. Thankful as always.
Love,
Mom

Still Day 27

2010-12-01T16:08:00.002-05:00

Got down to OR, signed consent, she had a fever, was shaking, both knees red and hot, and had been coughing a bit more. Since the bone biopsy and endoscopy weren't urgent, they have postponed all procedures. The best guess presently is Graft vs. Host Disease(GVHD). The problem is it is not presenting like GVHD or an infection. Took 2 biopsies from from the left knee area. Blood cultures for fever and adding an antibiotic. Had a chest x-ray. Wait and see what pans out tomorrow. Her nausea is final under control with the right combination of new drugs. She ate jello last night and liked it. That is something she typically would never order. She has been a little more lethargic today, but she hasn't slept for 2 nights. That also increases the risk for seizures, but they cannot give her anything to sleep either. The GVHD typically is treated with high dose steroids which causes more risk for the viral infection in the brain and risk of seizures. They are running on a very thin line. Everything they do causes risk to her in one way or the other, but there is no other choice except to deal with what comes each day. For every good thing that a drug does, it has risks. Kelsey is amazing. Even when she doesn't know the answer, she is cute, playful, and witty. She has even begun playing games testing us back. I don't think she knows it's a game, but it is the clever Kelsey in there. One of my mom's friends shared that this could be just God's way of sparing her all the pain she's going through. Could be. Only He knows the path she is on. Whatever it is, He is in control. We still find laughter every day...really we do. I think that even the doctors see the joy we are experiencing. She has the most pleasant demeanor, smiling like a Cheshire cat, mostly bright eyed(until today), and just cute to watch, and funny to talk to. What more could you ask for...yeah, yeah....good health. It's a coming!
Love,
Mom

Day 27

2010-12-01T12:26:00.003-05:00

It was a long day yesterday. She's in hyper-mode.She cannot stop moving. She wants to get out of bed, go to the bathroom all the time, plays with her lines, constantly has to be watched. Since she doesn't remember anything, a lot of repeating and explaining. She asks why much of the time. She was at grandma's yesterday. Talked with people who aren't here. One time she said, "This room is boring. I don't think you should buy this house." Today she is in a rec room. At least, she's "not" in a hospital. They have a tech that stays in her room at night. I am with her all day. The nurse monitors things from just outside her room. The correct drugs are on board. Her sodium is at normal now. Hopefully we will see some improvement from this. She was not near as random with the crazy stories yesterday. She cannot remember ANYTHING that is happening or has happened. They said that she won't remember things during this time frame say a couple of months. It would take months for her to layer new memory and this is 50/50. We remain hopeful with faith and courage. She is super pleasant to be around. Smiling and cheerful. She hasn't complained of pain or of anything. The nurses from 1NW have been visiting. We have so much support here and of course from home and from all of you out there who are faithful friends in Christ. I so appreciate your encouraging words everyday. I look for them and need them. I know I am not alone nor do I feel alone.

We skyped home last night. She talked with Dad, Trent, Karly, Konner, Kassidy, and Grandma. Tyler and Alex each had an interesting conversation with her on the phone. Aunt Debbie drove up yesterday to help me with her and brought me a few food items. She is a huge blessings. Sorry, Aunt Angie and Aunt Joanne, but for Kelsey right now everything is out of sight out of mind. When you get here, she will say she likes you too and give you big cheesy smiles.

She is getting her bone biopsy and endoscopy any minute, so I will finish here for now.
Love,
Mom

Day 25

2010-11-29T19:03:00.002-05:00

WOW, we are in ICU again. Another serious condition has come about. It is weird how you can look back at something that's happened and when it didn't make sense at the time, it does now. Yesterday, Kelsey commented between ins and outs of consciousness and puking, that there were a multitude of words that were buzzing through her brain making her nauseous. It didn't make any sense, but I knew it meant something. It was just too weird. This morning I was called around 7:00ish to come over because she was disoriented. She sure was. Her sodium was low, blood pressure high, fingers tips still purple, nausea & fever present. She was moved to ICU and will remain here until her electrolytes stabilize. Her morning consisted of chest x-ray, head CT, MRI of brain, echo-cardiogram, EEG of brain, lumbar puncture, 2 biopsies of fingers, another mid-line pic put in. A lot of IV medications being pumped in. The diagnosis came is as suspected. It is a viral infection of the brain. It was also present in her spinal fluid. It is found in the memory part of her brain. She knows me, herself, most of her doctors, not where she is or what is going on, she knows what a pencil is, and stuff. She doesn't know what year it is, sometimes she knows her birth-date. You cannot believe most of what she says because she doesn't know what is going on. She told the doctors that she had a good day yesterday. She ate 3 different kinds of breakfasts this morning. She talked with Karly this morning. NOT It is hard to watch. Fortunately, she has said the cutest things. I thought of how much fun Trent would have with this. The two of them would be hilarious together. We have hugged and smiled at each other a lot today. This is a serious situation that will take a long time to treat. She has had a few small seizures where she just quits speaking mid-sentence. They started an anti-seizure drug. This is one thing they are quite concerned with. They don't want to see a seizure that is difficult to stop or where she has to be intubated. Their fingers are crossed, but we have prayer. They cannot give me a prediction on anything. They say that each patient reacts differently. So once again, we cannot look any further than tomorrow. I am grateful for each day I have with her.
Love,
Mom

Day 21-Day 24

2010-11-28T22:21:00.005-05:00

Thanksgiving Day was wonderful. We shared a meal with immediate family, uncles, aunts, cousins,and second cousins. Kelsey's favorite was mashed potatoes with gravy. It was a slow beginning that morning. We had planned on leaving at 10:00, but Kelsey was nauseous and her head hurt so she was moving rather slowly. The morning IV meds slowed her down, and then they added one that didn't finish until noon. Fortunately, the meal was planned for 2:00, so we made it in plenty of time. Among the folly for the day, was a well decorated house for my 50th birthday. The girls hooted and entertained themselves with printing pictures of me when I was around 12. They were taped all around the house even the bathroom and inside the refrigerator. After the meal, the boys found the theater wigs and "put the band back together". This was so much fun to watch. Oh, by the way, the other photo's caption is, "Which one is Debbie?" We had so much fun. Kelsey slept much of it, but we took videos of "the band". When she returned Thursday night, her platelets were very low. So premedicated her, and put them in. I was with her until 3:30am. Friday and Saturday were fairly good days for her. However, her neutrophils dropped to 240 Saturday night so she had her shot. Today didn't start out too horrible, but the rest has been very horrible for her. Her counts are pretty good for today, but she has been extremely nauseous, the most since we've been here. None of the nausea meds, dilaudid, or atavan have made it better. She has been puking all day. Finally at 7:00ish, she fell asleep. I had been informing the nurse about this unusual development, finally the resident came in. Eventually, I glanced over at her and noticed that her fingertips are dark purple. I talked with the resident about the unusualness of the day, she called the attending who came in and has seen it for herself. She has conferred with the Pediatric Oncology doc who has seen Kelsey from the beginning. The best guess right now is acute graft vs. host disease. It could be an infection and gvhd. They are treating gvhd with a large dose steroid. Her blood pressure is up. She has hit a fever, but blood cultures were already drawn. The med that was changed on Thursday is restarted for infection. Her platelets are very low again, so more of that tonight. This is going to be another long night. I pray that I will get to sleep for some hours tonight, so I can be a good caregiver. I was already tired today from lack of sleep from family being around...ya know soaking in all the moments I could. She has requested prayer for all things and trusts in this.

Karly and Grandma's flight arrived home as scheduled. Tracy did the mammoth drive today and has made it home safely. Hopefully took a nap, then proceeded on to the airport to collect those two. All should be home as I am typing. We left each other already starting the countdown of three weeks until they return. Tracy and I were able to leave Kelsey on Saturday in the capable care of her siblings while we shopped and enjoyed each other.

As she is struggling through this period, helpless, miserable, and weak, a brief thought comes into my head thinking what have we've done. Then I'm reminded that this decision was the Lord's. Her life is the Lord's. The NOW is the only place to begin anew. Many things are beyond us, but I am still rejoicing in the present. Some of these days are very tentative, some seem more certain, but all are possible to get through with God.

"For nothing is impossible with God" Luke 1:37
Love,
Mom

Day 20

2010-11-24T18:57:00.005-05:00

She started the day early with an MRI of the brain which looked good. This meant no lumbar puncture:) Her head pain was pretty bad until 2 doses of oxycodone finally cut through. The skin biopsy from yesterday revealed graft vs. host disease. This is the cause of the rash and probably the liver counts. She is already on the correct drugs for this, so if it gets worse then there would be an increase in the anti-rejection drugs. She will be allowed to go with us to my sister's for Thanksgiving with strict instructions as to what to watch for. YEAH! They are changing one of the antibiotics because the sputum culture showed something that needs a better coverage plus she may already be resistant to the one she is on...this is still pending. The new antibiotic makes Kelsey's body hurt worse if this is possible, but that is what she has to do. She is still on respiratory isolation pending the nasal wash culture. Her counts for the most part are just where they need to be.

Everyone showed up safely this morning which made for a good day. Kelsey had dad buzz off her remaining 1 inch of fuzz. Kelsey buzzed dad, Tyler, and Trent. It was a bunch of fun. The best time was the photo shoot afterward.

Everyone is tired. I'm up later than usual and just need to get everyone settled in. Kelsey is in sleeping mode for now. Thanksgiving will certainly be what the Koch's are doing tomorrow.

Blessings and Happy Thanksgiving!
Love,
Mom

Day 19

2010-11-23T18:07:00.002-05:00

Everyday starts with a migraine and concern over such. Kelsey texts me this morning and says, "I need my mommy." The rash is the same. The dilaudid and oxycodone don't cut it, so they are working on a better drug. Since the transplant the head pain has been much worse. Several thoughts come into play...drug related(from anti-rejection drug), sinuses(but look better), brain issue, meningitis has to be ruled out so performing all of the tests that come with ruling things out. The rash can be related to several things, but 2 most likely causes are Graft vs. Host Disease or reaction to the IV antibiotic. Again, it is more a ruling out process. A skin biopsy was taken this afternoon. The nasal wash is still pending. We are still waiting on the news about the chimerism. We are hoping for the Spanish cord to have a majority of cells present, but are not opposed to the German cord either just as long as it isn't Kelsey's cells. She received her immunoglobulins today which went well. Except for her liver counts which are still rising, her counts are just where they need to be at this day into the transplant. She is mostly just worn out and needs a break. The doctors are trying very hard to get her on pass for Thursday. We pray that all things pending for tomorrow come back for the positive. Please pray with us.

Tracy is making the trek out here with everyone else so pray for safe travels. We are excited to be together. I suppose there will be much squishing going on tomorrow. Another blessing today, Kelsey received an extremely cute, soft, loosely knit scarf that immediately was wrapped around her bald head and has looked so adorable on her today. Love the look. Although it is cute, she is not into sharing the photo with the world just yet.

Karly had a good check-up. She has been anemic since the lymphoma last year, so they checked again and have put her on some supplements. This may help with her tiredness. Her ear tubes were just beginning to infect, so antibiotic drops started. Found out why her skin was getting worse and have a plan to correct this. We talked with the transplant doctor about when Karly will be started. We have a tentative plan to start the eligibility week the second or third week in December. This would mean the transplant would need to be started within a month after we sign the paperwork. This is a loosely based plan depending on how Kelsey is doing and if anything needs tweaked in the protocol. He reminded me that this is the first cord blood transplant for this disease in the world. Also, the type of conditioning they did has not been used by the other related and unrelated transplants for this disease. So many factors, in theory, and of course experience went into the planning for this, but no one knows what will happen. He wants to make sure Karly will have the best outcome after his experience with Kelsey. Sounds like Kelsey, once again, is a guinea pig, but a cute one. She doesn't mind. She knows what this means in the long term.

Pretty cool. In the devotional today it talks about being ingrafted in Christ. We are to marvel at the wonder of being a new creation, grafted into the Messiah. Kelsey is already ingrafted in Christ, and now she is being engraphed physically. Just a neat vision.

Love,
Mom

Day 18

2010-11-22T18:41:00.002-05:00

She's had another long day. Good news is that they gave her the Cidofovir. With that drug comes a lot of fluid, nausea, and a crushed up nasty tasting pill that is taken 3 times. Just the mention of its name makes her gag. It is very mental to get through it. Karly and I are trying the randomness of silliness to take her mind off of it. In the midst of that is more platelets, reaction, itchiness, ice packs, heartburn on fire. We are trying to laugh our way through it. Thank goodness Karly is here. She is great at funniness. Liver counts still rising, Yuck. Rash is on arms, face, legs. She is wearing a beanie tonight although it makes her head hot. With the hair gone, the molluscum really shows so she likes to hide it. I got her a couple of scarves and t-shirts for a head wrap. We're learning. She is blistering under her dressing around her pic line...kinda weird. Her sputum culture showed some weird growth, so she is on respiratory isolation...currently pending the nasal wash. Her chest x-ray looked better than the one last week. Finally she is resting...maybe no drama tomorrow?

I loved my devotional reading today. "A thankful mind-set does not entail a denial of reality with its plethora of problems, instead it rejoices in Jesus, Our Savior, in the midst of trials and tribulations. He is our refuge and strength, an ever-present and well-proved help in trouble." I love this truth.

The message on Kelsey's blog last week is finally able to be copied. With the computers blocked here from certain functions, I was able to get what I needed while at my sister's. May this bless you as much as it has blessed us.
"I just happened to notice you today on my friend's page. I am a minister in Ohio and that's how I know our friend.

I hear God talking to me about you this morning, and I just want to share what I hear him saying…

He says that your faith is so pleasing to him, you have such a high level of trust in him and his word and it truly is the kind of faith that can move mountains. He says even at your weakest you are so strong in your faith and unwavering trust in his goodness and mercy.

Your foe is a formidable one but it can't defeat you and you will not succumb to it, you will never wave the white flag of surrender but you shall triumph over it.

I see you in the future, you are older, (yes you will live to be older so don't fear) and you are standing on a stage in front of all kinds of doctors and you are speaking about very complicated things that I can't pretend to understand but it is apparent to me by this vision that your renowned in the medical community and have come up with cures for diseases and accurate reasoning about things that have yet to be understood by the brightest doctors.

You also have on a white lab coat yourself so whether you are a doctor or a scientist, I don't know. I hope this encourages you, you are in the heat of the battle right now but you are going to be victorious. I will add you to my daily prayers as well."

Blessings!

Isn't that a WOW moment? It is just like our God to give us what we need when we need it. We are energized by it. I will leave you with that. Be inspired!
Love, Mom

Day 15

2010-11-19T15:17:00.002-05:00

Today has not been too bad. She took a shower which makes her head hurt because she is standing up too long. Her hemoglobin is down, so she is getting 2 units of blood. Her liver count is on the rise, so it's a bit worrisome to the docs. They are watching it closely. It could be one of many signs, but the one that comes to their mind first is the Graft vs. Host Disease. It doesn't do us any good to worry about it. We will continue to take it one day at a time. Today our devotional read to cast all our anxiety on Him so that is where we send it. I'm finishing up Kelsey's laundry and my sis is here. Gotta run, but blessings to all of you and thank you for your love and care.
Love,
Mom

Day 14

2010-11-18T19:15:00.002-05:00

This morning was a rough one. Her fever started at 100.6 rose to 102 with Tylenol, bad head pain, and platelets low. They drew all necessary blood cultures. The line had been pulled last night, so it most likely released some bacteria into her system. The incision itself was infected. They premedicated her before the platelets, however, she had a reaction. It started with an itchy tongue, the lips, palate, inner ears, and body. They added more benadryl and stopped the infusion. She recovered within an hour to only have to go get sedation for the pic line. Now, call us nuts, but I had been rubbing her head throughout all of this and her hair was a matted mess. She said to just cut it all off.(not the first time she asked for this) So when the nurse stepped out for something, I grabbed the scissors and chopped it off within an inch of her scalp. She really was quite relieved. Then, the next moment she left, Kelsey wanted it washed which only took a minute. We had it toweled off just in time to wheel her to Interventional Radiology. All went well with the procedure, and she slept most of the afternoon. Her neutrophils have indeed fallen to 750, so the shots will begin again tonight...maybe every other night, who knows.

I am still planning on leaving tomorrow for the weekend. Alex is coming Friday night and staying with her. Of course, we cannot have another morning like today. Tyler doesn't have mono. Still sick but seems to be improving. He's going to be in Muncie on Saturday. Karly and Konner have their volleyball banquet Saturday night. Whole family including grandma is going. I am excited for them. It was Konner's first year, and we had no idea that Karly would be able to even play a season this year. She did extremely well. I was telling her physical therapist out here about her awesome serve. I believe I saw a hint of pride...not really, but great excitement anyway. Can't wait to hear about the evening.

One of the things we have no idea about nor need to know is how long any of this will last. We do know that it is different for everyone. We cling to Jesus moment to moment; He enables us to persevere. Thank you for lifting us up to our Father!
Love,
Mom

Day 13

2010-11-17T13:33:00.002-05:00

Her head pain and nausea were increasing over the past two days. We were attributing these things to the starting of the Cidofovir which can take the blame in part. The head pain was indeed the beginning of another line infection. Her fever was beginning to rise, and there was pain at the site this morning. They won't be able to put another line in until tomorrow, so a peripheral IV was put in her hand, and the line will be pulled today. The drug that was stopped Monday has been restarted. Hopefully, these things will put her back into a stable state of being. Her neutrophils are still above 1000 but have dropped since the shot was stopped. Still everything else is looking good. We rejoice for every good and bad day. Her hair yesterday and today is really starting to come out. I cut off about 4-5 inches of hair today. I had the privilege of watching our research nurse coordinator present the girls case at the 2nd Annual International Association of Clinical Research Nurses Conference. He did a marvelous job. I have noisy neighbors at the Inn on both sides of me. This makes me tense. The noise went on far too late last night, so pray with me that it will be a more peaceful evening tonight, and I can get the rest I need. Many people come here from out of the country. This place is sorta like a fantasy playland hotel resort to them, and it is a big party with staying up late and running around. Then there is me who loves the facility and the care of the people, but want to experience rest and peace while here. The two clash. This remains a prayer request for me to relax and let God take care of me. I have another grand story to tell but cannot access facebook on my computer at the NIH, so hopefully soon, I can share this goose-bump story, a God story, so powerfully encouraging and hopeful that only He can provide. I love to spread the good and glorifying news of all that He is doing. All I can say is WOW!
Love,
Mom

Day 11

2010-11-15T19:07:00.002-05:00

Her counts are still holding. They will be stopping the GSF shots which boost her neutrophils, so they said to expect drops even below 1000 again. If that happens, then shots will begin again. She is glad to have a reprieve because both arms are so bruised from the shots.
She remains having a low fever, but nothing worrisome. They just dropped the IV form of one of the immune suppressive drugs to oral form. The other one already is oral. The once a day IV antibiotic to treat the staph bacteremia(sepsis) will continue and the other is stopping .She could go outpatient on the IV drug and just pop in once a day to change the bag. It does not look like she will be outpatient this week, but every day is a day closer. The key thing is not move too quickly and remain safe in treatment regimes. The multitude of docs finally agreed it was safe to start the IV Cidovofir today after taking 2 doses off. So, she is happy about that. She had started to see the shape of her real fingers after 5 weeks of it and the virus was starting to return with being off. On Thursday, they will check for the first "chimerism" from her blood, no bone biopsy until Day 28. A test for chimerism after a stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue. They should be able to tell the percentage of each cord and Kelsey. They will continue to check this at certain intervals.

More prayer requests, I found out that Tyler is sick at school. He has an ear infection and possibly mono. The doctor didn't test for it, but said if he was still sick in a week, he would. Tyler's throat is on fire, but no strep. He will be home in Muncie this weekend, so pray he gets well, no mono, no getting anyone sick, and most important he doesn't bring anything horrible out here. God can heal the sick. We need to be together for the holidays. I would hate to leave him alone at home. May this not happen.

The previous entries to the blog, the YouTube videos, were to encourage Kelsey. I hope that you can be encouraged to. It was a huge hit here. Thank you guys for doing that. Oh, another fantastic thing happened last Wed. and Thurs. at Taylor University. My mom, with a bunch of friends, took just over 400 swabs to send to Be The Match. It was an awesome show of support. What a sacrificial thing these students are doing! May God Bless them. Thank you mom, friends, and all the people at Taylor University.

I am constantly challenged by all the blessings we receive. The challenging part is the receiving. Feelings of guilt, unworthiness, and thinking others are more needy creep into my thinking. God's kingdom is not about earning and deserving; it's about believing and receiving. I am learning to accept the gifts with an extremely grateful heart. I rejoice and try to find ways to bless others while here. Our God is a God of abundant gifts, may you receive from Him with a grateful heart.

Love,
Mom

Joyful Heart Mix

2010-11-15T14:53:00.001-05:00

Joyful Joyful Mix

2010-11-15T14:52:00.001-05:00

Day 10

2010-11-14T11:28:00.002-05:00

Her neutrophil counts are holding are 2000 which is just within a normal range, but average range is 4000. She had a fever last night which she beat without the help of Tylenol. She feels yucky but a better yucky. The virus' on her body are getting a bit worse which is what we thought would happen without the Cidofovir. I believe everyone is back on board with restarting this next week which makes Kelsey happy. It makes her nauseous, but it is worth this price. All her doctors are still amazed at her recovery. This was one of the things we prayed for at our prayer meeting before we left, and praise God it has come to pass. There will soon be talk of discharge, I think before the 30 days. Continue praying for her quick recovery, no infections, no fevers, no downhill swings. We won't be looking to the future or anticipating this for we must live only to get through that day. Each day brings decisions, so we pray that each day these are made with wisdom.

Please pray for Karly as she is feeling more tired than normal. Her skin is getting worse. Her hearing is down a bit. She returns with Grandma on Nov. 21 for her refueling and appointments. She went to sleep on the sofa and was still on the sofa the next morning when Tracy left for work. She said she had woke up, but was too tired to go up to bed. The picture was too cute not to share.

Sister Debbie just showed up with a dairy free smoothie for Kelsey and some super soft thong slippers. We are going out for awhile. Hannah is staying to keep Kelsey entertained. There are 2 cute youtube videos with Konner and Kassidy that I will try to share when I get back. One of the families that does school with them made these with their 5 kids.

Talk soon,
Love,
Mom

Day 7

2010-11-11T12:05:00.002-05:00

Day 7 finds the doctors extremely pleased at where she is in regards to engraphment. They really believe this is what's happening. Her Absolute Neutrophil Count is 870. This is good news. They have said all along that she would be outpatient when counts are over 1000 and no fever. Now the fever continues to haunt us, but it is normal to roller coaster. Riding a roller coaster is sorta what it feels like in terms of emotions. Good news, bad news, good news,...Doc said this morning that in 3 days, we should be able to say that forever in history, Veteran's Day 2010 was her engraphment day. She is very tired today and had another fever this morning which again is normal. She just gets to rest. The first results came back from yesterday's blood cultures as negative. Still good news. She has not lost her hair. She has been eating a little everyday. All I can continue to say is how wonderful everything is at this point. Again, if this is truly engraphment, she is the rare one. To engraph after 7 days only happens in 20% of the cases. Go God! That just gives me goose bumps and watery eyes all at the same time. This is amazing to watch! We are finding refuge under His wings.
Love,
Mom

Good news this morning...then

2010-11-10T17:02:00.002-05:00

We started the day with good news. The doctors cannot say for sure that she is on her way to engraphment, but it is looking good. By Friday, if the counts continue to rise, they will say she has engraphed. The infectious disease doctor was just in and he says that this is the 6th cord blood transplant they have done and that this is a record as far as her counts reaching the level they are by day 6. The bad news is that she has a fever again. This could mean one of two things. She has infection in her lungs or sinuses that isn't being covered by the two major-hitting antibiotics, the antivirals, or the fungal. I suppose she would be put on another drug. The other thing would be engraphment syndrome. It is more likely this. This would have the same symptoms as an infection so a ruling out process would begin. At this point she's had a chest x-ray. It will go symptom by symptom. Just keep praying. People are noticing how well she is doing. Her last nurse stopped in just before leaving and was telling us that as she was sitting outside our room she kept noticing all the famous doctors that they never see going in and out of Kelsey's room. It made her smile and get a kick out of it. This is really good news that we have such awesome doctors. Her head pain and nausea have been better. She is tired. Thank you for your encouragement. We are not alone. We do not feel alone.
Love,
Mom

Out of the ICU

2010-11-08T20:33:00.003-05:00

Sunday found her doing better, but head pain and nausea were still a problem. They still had to use dilaudid and atavan to keep her comfortable. They had determined through blood cultures that the port had been infected from the sepsis. Rats. She really liked her port. The port was removed today. She recovered in ICU and has been released back to her room tonight. She had great doctors and nurses in the ICU. I felt confident in her care. She didn't like the constant monitoring...leads coming out of her, blood pressure cuff always on, both IV lines in constant use, pulse oximeter, and beeping and warning sounds going off all night long. She was viewed through a sliding glass door. She was so happy to be back in her quiet, closed, and dark room. There is still a lot of debating with her oh so many doctors who battle on her behalf. She has made a super great recovery...Kelsey said she was told she was lucky, but we know it wasn't luck. To God be all the praises! She is doing remarkably well even though her counts have bottomed out. She has many issues still pending, so I won't go into all those details, but continue the vigilant prayers through the next weeks as these stem cells find their home and mature. If an issue arises, I'll give specifics to pray about. Meanwhile, I hope that we can both sleep well tonight. Tomorrow is a new day.
Love,
Mom

A tough 24 hours...

2010-11-06T16:58:00.003-04:00

Cell day went well, even the next day was going pretty well. She took a shower, but upon exiting, she was in severe head pain and nauseous. She finally got some narcotics, but didn't help much. Not much of anything was working. She spiked a fever. Blood cultures were drawn from both lines and the port. Strong antibiotic was started. Continued monitoring, a lot of fluid given. By morning, there was a second spike of fever and her blood pressure was too low. They sent her to ICU this morning. At ICU, her fever was down, the blood pressure was stabilizing from all the fluids but remaining low. Soon thereafter, first of the blood cultures were back confirming what the suspicion was...staph aureus in the blood or sepsis. A plan was made, more antibiotics on board, CT followed, new line placed, old line pulled. She is finally semi-coherent after 24 hours. I believe the plan is working. Sister Debbie traveled to NIH this afternoon, found me in the waiting room, brought a sandwich and waffle fries, and stayed with Kelsey while I received a well needed shower. So upon returning to the ICU unit, I find Kelsey awake and able to talk. Debbie was sitting in the one and only chair, so we asked the nurse to bring in another one. She did. But Debbie said that she'd keep the comfy one and that the other one was mine. Well, the nurse found an even more deluxe chair and wheeled it in also. This one was quite deluxe equipped with head rest, able to recline, tray table, and drink holder. So, Debbie confiscated that one. I took a picture, but have not been able to download it yet. Anyway, it caused laughter with us, the nurses, and other onlookers on the floor. In fact, a nurse came in and commented about how happy we were. I said that is just the way we are; we will find happiness whatever the situation. We are not a "woe is me family". This situation is fearful, yet we knew it could happen. I didn't think we would end up in ICU. I am getting a lot of encouragement and reminders and prayers. We feel confident with the treatment. We feel confident in our decisions. Thank you Jesus! Just as a side note and another piece of laughter, Kelsey has a green chin and chest from the antiseptic used for line placement. Debbie said it was the color of the wicked witch of the west. Kelsey said it reminded her of the I Love Lucy story where Lucy asked the doctor what was wrong with her. He said, "You have the goblutz." Lucy says, "What does that mean?" He says, "I'm going to have to remove your zortch." I really don't know what that has to do with anything except it is playful and fun. Laughter is the best medicine. Thank you Jesus that we can laugh in the midst of crisis. Thank you church for all the prayers. They are sustaining.
Love,
Mom

It is her new birthday...CELL DAY!

2010-11-04T15:59:00.005-04:00

So we are very excited that the cells are going in right now, started at 3:42pm. Almost in now. Finished at 4:18pm. They will wait an hour to see how she is doing, then start the thawing process on the other one...probably around 7:00pm. Then we wait. I suppose this will be the hardest part. We know it will be the hardest part physically for Kelsey. When her counts drop and the full effects of everything occur, the doctors say she will feel the worst she has ever felt. She says she is fully prepared for this. We also know that we are utterly dependent on Him for everything, including our next breath. So thank you for praying and encouraging and staying near to us in spirit.
Love,
Mom