Friday, January 29, 2010

Another Day of the Same

Karly woke up today with more of the stomach ache. She also has Thrush. They aren't sure how far down her throat it goes, so she was started on an IV fungal drug. She has been pooing a lot, mostly diarrhea. Nobody has the answer, but the hope is that this too will pass over the weekend. It could be a result of the decrease in the narcotic. The stomach ache could be related to the Thrush. If it remains, it will be more closely looked at on Monday.

Our Dr. told us today that the person they were looking at was NOT a match. We still need a 9 out of 10 OR 10/10 match. We talked about the double cord blood transplant, but it is certainly not ideal. The recovery is much longer resulting in a greater risk of infection. The patient stays neutropenic longer. Please keep encouraging people to join the registry. Kelsey will need her stem cell transplant sooner than later. Our prayer is still for the protocol and donor to be ready SOON. She is still at a great risk. Her liver can handle only so much. There is even a possibility that the new drug would be discontinued if her liver continues to be at risk. We pray that the liver can handle it because the new drug makes her viruses less. I know that this may seem technical to some, but God knows. He knows the exact timing of it all.

May the God of hope fill you with all joy and peace as you trust Him. Romans 15:13



Every moment of time is so precious. Sharing those moments could possibly be the most important thing that we do. True, it is not possible to share every moment together for every circumstance, but those once in a lifetime moments are the ones that truly hurt to miss, like last night. Sharing Konner's spectacle with the Wizard of Oz is truly a huge loss to our family. Not being able to celebrate her joy as a family really is tough. It is the biggest loss to date we have suffered with this curse.I just felt compelled to write this brief note because every family needs to take those special times and cherish/ celebrate them. They come along once and then that time can never be relived.

Love, Dad

Thursday, January 28, 2010

Mom not sick, Dad is.

Hi Everyone,
After Tracy posted the other day that he was sick, I've received a few emails saying for me to get better. Sorry everyone for the confusion. Just check at the bottom of the post to see who wrote it. Since I'm clearing up this issue, I'll give a brief update.

Kelsey couldn't take her study drug on Tuesday and hasn't been allowed to yet. Her liver counts were too high. She will be at NIH Sunday through Tuesday. More of a routine visit and refuel her antibodies. She seems to have a bit more energy and is helping out at home.

Karly has had a much better week. She has been consuming calories everyday..and finally was able to gain 1 pound. She left her room three times Wednesday for physical therapy, to use the relaxation chair, and play bingo. By the way, she was the big winner of the night. Today, we planned a visit to the American Cancer Society and lunch. When I got to her room this morning, her stomach was hurting pretty badly. We did get to the Cancer Society, but had to get her back to her room to lie lunch for her. She didn't eat breakfast or lunch. It was a setback. We had planned to go on the field trip tonight which was to Union Station, but had to cancel. Her stomach is settling down tonight, and she has eaten a little. I am hoping that tomorrow will be better. She is conversing more with the nurses, doctors, and me. She looks so much more alive. Praise God! There a things that happen everyday that I won't go into, but all in all she seems to be in an improved state.

People have offered to come out to take care of her so I could go home for awhile. Thank you to all who have offered. Karly wants and needs me here. I will be by her side through it all. It gives her peace. It gives me peace. If I went home, I would not be able to focus on the everyday happenings. Tracy has had to create a system that works for him. I wouldn't even know how to jump into it without wanting to revert back to my system. I love that we can Skype. Everyone is doing extremely well. For now, this is Karly's and my home. We have taken on Pam's lead of decorating the room. We have a card wall, a bear wall with posters, and every counter has something that reminds her of her friends and family in Muncie. I will post a few photos later. Thanks to everyone who is still sending cards and gifts. She recently received encouraging posters(Sarah I mean you). They are on the wall directly facing her. It is FUN! Praise God for you all!

Monday, January 25, 2010

I find myself about as miserable health wise as I've been for quite some time. Anyone who knows me knows that just the fact that I went to the doctor was proof I must be major sick. The office worker at the doctor's office asked me if I had ever been a patient with them, and I truly couldn't remember to which she added, "Oh, I see here you were back in 2002." I even made the comment to one person that I was so glad that I got to the doctor so quickly so I wouldn't have to put up with feeling this lousy for long. Then I got to thinking about that. What must this feel like to go to the doctor and feel worse than I've felt for months? Heck in the words of Kelsey, "Welcome to my world." How frustrating must that be? I knew I had strep; I knew that all I had to do was go get the drugs, and it would be better in just a few days. That's the way it works, isn't it? I can sort of relate better to what the girls go through...being in bed nauseous and weak for months on end and the torture of constant skin with no relief from the pain of cracked skin and the maddening itch. A simple strep can teach you a bunch. I have some amazing girls that truly can stomach so much more than me.

Sunday, January 24, 2010

Good Weekend

The weekend has gone well with minimal vomiting. She feels crummy but is more alert and is trying very hard to eat and walk. She had lost 30 pounds at one point. With the IV feeding, she put 11 pounds back on. Then with days of diarrhea, she lost another 5. She is around 103lbs. right now. She has been more talkative and more loving. Praise God!

Gabe, a family friend, had is 18th birthday party Friday night. The group of boys had decided to re-shave their heads. Right photo from left to right: Zach, Nathaniel, Joseph, Trent, and Gabe. It was extremely fun for Karly and I to see this on Saturday. Thanks boys for the laughs! Saturday night Trent Skyped us from home. He had gone with the Yul Brynner look. For those of you young ones out there, just Google the name. I must say he looks great. All of the boys look very handsome. I hope to get a photo of Trent to share with you. Karly's comment was, "I have more hair than you. I have options." Then she showed him her pony tail. I'm glad she is taking it in stride. Praise God!

Friday, January 22, 2010


Today, non-officially, counts as the half-way point in Karly's systemic cycles, if 6 is the magic number. They will assess her situation at the end of 6 cycles to see if any more are needed. The chemo in her Ommaya Reservoir will go into May. The doctors have been tweaking things this week. With the change in her nausea med, the stopping of the IV feeding, and the addition of her appetite med, she has done quite well. The major change came last night. They stopped the IV basil and push narcotic. They started a narcotic patch and Advil. She had a restless night. She has done quite well with the change. Pray for success with the pain, nausea, eating, pooping, and mobility. Her liver continues to be angry...and we don't know why. Pray for wisdom in this area. All in all a good news day.

Kelsey will be getting her blood drawn today. This will tell us how her liver is doing after the double dosing of her study drug on Tuesday. She will be returning to NIH on Sunday for blood draw on Monday, curettage, pictures, and I think her IVIG. She shouldn't need to stay long. She is a big help at home.

We had Indiana visitors this morning. This was a welcomed surprise. The Bennett family had been in the area...Shane teaching Perspective classes, & family sight-seeing and learning. I sent a head rub, hug, and kiss to Trent via Joseph...."This is from mommy!" The boys from life group are planning on shaving their heads again tonight at Gabe's 18th birthday celebration.

Life is seeming pretty stable on my end today. My take on how things are going on the other end is that it is going very well also. We were blessed to find out that we will be able to spend our next time together over Spring Break at a house by the ocean in Ocean City. Please pray that the timing is perfect for both girls to be able to go and the we ALL will be together for this respite care. Our family loves the water, sand and feel of the breeze of the ocean! The photo on this blog is Karly's pop can creation at Lake Michigan this past summer. The other photo is her Angel's Volleyball. She is quite good at sand creations and volleyball!

Love to you all,

Saturday, January 16, 2010


As I sit here this morning, it seems strange. The quiet is overwhelming. Oh 7:19 in the morning was usually a somber time for this house. It was usually me and a hamster wheel making noise. But the potential for chaos was always there. But the scattering of a family has occurred. And today with Tyler gone, Trent soon to be at an all day robotics build, the little girls on weekend fur-low at the Reads, and the Hamster wheel quiet, it seems quite odd. Thank goodness Kelsey will fly in today and shake this place up a bit. There is so much more to beat than cancer here, so much more.
But it is time to stop pondering and live in the reality of bill paying Saturday and the weekend clean routine. So Onward Christian Soldier, marching as to war. ( give credit to that wonderful old hymn) It is true that if you don't pick up your cross daily, you can easily leave it lying in the dirt somewhere. So praise God for splinters in the shoulder. If you have to dust off your cross today, you'll find it cleans up nicely.
Oh and don't worry Karly, the hamster is just sleeping!

Love Ya all,

Friday, January 15, 2010

Dictating through Mom :)

Hi All,
Sorry I haven't been on for awhile; I've been distracted. Mom has kept you up-to-date on the medical stuff, but not on what's happening in my life. I'll start back in December when I finally made the decision to move back home which happened to be a great decision. The decision was reached because I had been so sick and nothing was improving. Little did I know that from Maryland my mom was plotting to re-vamp the guest room into a Kelseyfied habitat. I showed up on the doorstep during the week of the renovation(3 days before going to Maryland for Christmas). I found a large SUV in my driveway and a familiar face came to the door to question my arrival. I had accidentally stumbled upon the plot. Now, after being out here a month, I'm finally being released and able to see my room in its finished state!
That's right folks. I'm going home this weekend.

After being off of my study drug for two weeks, I was pleading to get back on it. I was upset with my liver. My whole body had regressed back to the pre-drug state if not worse. My cracking fingers, pain, use of my hands, and growths made my life miserable. Thank goodness I had my mommy to do stuff for me that I could no longer do. I'm excited to be back on the drug because of what I had already seen happening. I had reached a point after trying so many extreme treatments that to think one might really make a difference was not plausible to me. After seeing the before and after photos of only 4 weeks and finding out they were taking me off of it, I got emotional(down in the pits). I had thought that I might really get my hands back and use of my body back. This would be good because then I could use my DDR I got for Christmas. The docs and I are very excited about me taking a double dose of the study drug for the next two weeks as long as my liver behaves. :)

While Skyping Grandma today, Dr. Freeman came in to recap my discharge orders. While talking about this stuff, mom asked(as she does daily) if she had spoken with the head transplant doc. ****Kelsey starts giggling louder and almost coughs a lung up because she dictated to mom the word "head" transplant. It took a minute for it to sink in to mom what she had just typed for me. Anyway, the transplant doc found a close swab match and is in the process of contacting them for a blood sample. OK folks rev your prayer engines! This could be it.

Still dancing through the rain,

YoYo Feelings

Although, her other counts are continuing to rise after cycle 4 of chemo, her hemoglobin did not rise today. We thought we had gotten through this round because it had risen yesterday, but today she dropped to an all time low. She will be receiving a blood transfusion-2 units later today. She had another MRI of her spleen and kidney. She walked to the procedure which is another thing they have been pushing. The big news today is that she finally pooped after 2 weeks. Maybe they will leave her alone for awhile in this area anyway. Everyone that knows me, knows that I am a planner. The days here are so NOT planned. Things pop up at any moment. I was trying to sleep in today, not thinking anything would happen. Kelsey calls me to start telling me what things Karly is going to need today, and this is only at 10:30am. You may be wondering why I wasn't up at that time. Karly slept all day yesterday and woke up at 10:30pm. This starts the late night of medications, trying to get her to eat, and massage therapy she would receive all day and night if someone was willing to do it. I didn't get to sleep until about 2:30am. I talked with her today about the need to get this sleep pattern more normal. She agrees. Yeah! Usually when we have company she likes to stay up with them to play, talk, and get massaged. I don't blame her. It is special when people visit so keep coming.

Thursday, January 14, 2010

Good News

Karly skimmed past the blood transfusion this time. Everyone seems pretty certain it will happen next time. We could always surprise them. Kelsey took her study drug on Monday. Her liver tests today were stable enough(only double) that she can return home for the weekend. I will be losing the last of my roommates this week, but sister, Debbie, and Deana will be coming Sunday night and Monday. I have been a bit sleep deprived. Karly perks up more at night when I want to shut down. This causes some short, cranky bits of communication. This could use a lot of prayer. Also, the little thing we take for granted..pooing on a regular basis... is causing the doctors to get a bit pushy on the stool drugs. Please pray for some "movement" :) All in all things are fairly stable right now. Thanks for all your support.

Wednesday, January 13, 2010

Quick Update

Here is another quick update for you to be praying about . Today the nurse came in and said that the doctor wanted to do a blood transfusion this afternoon. After talking with the doctors, they decided to wait another day. Her blood levels have gone up some since yesterday, so they are going to wait and see what tomorrow brings. This is pretty common for chemo patients. Please pray for clarity for the doctors and that her levels will go up enough that she doesn't have to do a transfusion.


Update from a Friend

This is Sara Coggins writing from room 1642 in Building 10 of NIH, the temporary home of Karly Koch. I have been visiting Tammy, Karly, and Kelsey for the last few days and Tammy asked if I would be willing to write an update for the blog. As a result, this will be a little bit of a different perspective than what you may normally get. :)

Some of the fun things I have been learning have been how to adjust the machines so that they don't beep, how to get warm blankets from nurses, how to give a good massage, how to get air out of the lines and restart the machine, where the tray table and trash can are supposed to go (which is a very specific spot), how to unplug the IV pole and make sure it is ready for a trip to the bathroom, and how to properly cheat at games so that she has an excuse for loosing (the queen of cheating still continues to be her mother). I have had to resist the temptation to push every button on her bed - there are a lot of buttons and pushing buttons is fun.

Tammy and Kelsey were able to go to the mall yesterday with Tammy's sister. They found some great deals. This gave Karly and I a chance to hang out and even go to the library here at NIH to pick out a movie to watch - we will be enjoying Jackie Chan later today much to Tammy's delight (haha)!

Karly has had a couple busy days. She has been able to sit up more, without as much of a headache. She has been on a short walk each of the last couple days. On Monday they had a beauty seminar for cancer patients here at the hospital that lasted over two hours. She was given a bag of cosmetics and a great hat. They gave them tips on applying make-up and fixing their hair. It was a fun outing for them. Yesterday she did some painting and enjoyed a magic trick kit that the Children's Inn brought over to her. The "tricks" were so bad that we got a lot of laughter out of them. It has been fun to see her headaches decrease so that she can sit up a little longer. She has also gained some weight back! She just has to be careful not to overdo it and tire herself out too much.

The doctor's felt that Kelsey's liver counts went down enough for her to start her experimental drug again on Monday. She is excited to be back on this medication again because it was really helping. It does cause her to loose her appetite. They have decided to have her stay here until next week because they want to keep an eye on her liver. They will be testing her blood on Thursday and Friday. The results of those tests will determine her continuation on the medication as well as her date of return to Muncie. She is hoping to be back with the rest of her family (and fiance) early next week. I know they have missed her and are looking forward to her return.

Karly is in between rounds of IV chemo this week. Even so, she still had chemo injected directly into a port in her head as usual on Monday. I have been amazed at her strength through all of this. Yesterday afternoon was tough because she discovered a sore on her tongue (from the chemo). It caused it to be painful to talk, swallow, and eat. They have given her some mouth wash which should help numb the pain and allow her to eat if she wants. Although it is a small sore, it is just one more thing that causes life to be challenging for her. So far it is just one sore, but it is possible that the chemo could cause sores down her entire throat. We will be praying that all she has to deal with is this one sore on her tongue. Her immune system is further compromised due to the chemo, so she has to be careful who she comes in contact with at this point. They took her off some of the antibiotics that she had been taking in order to hopefully decrease her nausea.

Last night I had the chance to talk to one of her nurses in the hallway. It was encouraging for me to hear how his life has been touched by the Koch's. He told me that he had not seen her for a month and so when he came in the other night after her being on her chemo for a month, it was hard to see the physical signs of how hard it had been on her. He shared how spending some time with Karly and seeing her strength had allowed him to put the troubles in his life in perspective. It is fun to see how the Koch's are impacting the lives of those that they come into contact with.

Well, I think that is a pretty complete, non-medical summary of what has been happening these last few days. I continue to be amazed at the strength that God is giving each one of them as they deal with things that I can't even begin to imagine being faced with. Thank you for your continued prayers that help to hold this family up. They are so appreciated and felt!

From the hands of the new masseuse,
Sara Coggins

Friday, January 8, 2010

Dad's Post 2

I really believe the formula for beating this is "God /(prayer + faith) - time + obedience"!

I'll just have to be honest here, I would give anything to not be here, not to be facing the challenge of life in Muncie, separate from my spouse. But it is an equal amount I would give to see the cancer disappear. So the equation is balanced, God's love sustains.

The bills seem to be payed , the bellies are full, and the life is tolerated. We did revamp school here and with little birth pains, it seems to be working. My sacrifice to this is not having much week night evening TV, probably the best thing that could happen to me. I hope to get in the gym again next week for the first time since before Thanksgiving. But I don't think morning spin class will be possible for a while as I stay up too late attending to details. Even this may change as Kelsey comes home next week, cross your fingers. All in all, the grind is just that, and the formula will produce God's results.
We had some neat visitors on Tuesday; many were the doctors who worked in the laboratory on the Dock 8 discovery. For the past year or so, they have been trying to activate Kelsey's T-cells with no success. On December 18, they were activated. This is very exciting news! They watched her T-cells move and replicate for 5 days. Then the cells started dying. This is OK though because this will be the next thing they work on. You can only take a second step after the first has been taken. We also met a man from Oxford who created the Dock 8 knock-out mouse. These mice are a version of Kelsey and Karly. Through these continued studies, more will be discovered about how to help the girls. Of course, we are still hoping for the stem cell transplant for both girls, but until that happens, they will continue using the girls to help conquer Dock 8. Praise the Lord...Tyler doesn't have Dock 8 nor is he a carrier. Another group of doctors in the Middle East have found 19 to have Dock 8. This means that more studies will be conducted over there also. That makes a total of 27 in the world with Dock 8. Tuesday was a good day for news. Karly has continued with her TPN this week. She was able to take a chair shower on Thursday. She eats small amounts of food in the evening. I was asking what foods she would like to eat. She replied, "I want an Ivanhoe's breaded tenderloin, tater tots, and strawberry lemonade." When the doctors came in I relayed this information to them. To our surprise, none knew what a breaded tenderloin was nor can you buy them. The nutritionist was ordering Karly the tater tots to make in the special kitchen. One of our nurse practitioner's, Vickie, brought in a blender, lemonade, and frozen strawberries. We made strawberry lemonades last night! People here are so great to us. She asks a lot for me to cook, but I don't have my herbs, a crock pot, or the time to cook for her. If I go cook, it takes a long time that I have to be away from her. I tell her to hang on and when she becomes an outpatient I will be able to cook. She finished the systemic chemo on Tuesday for cycle 3. She still gets the Central Nervous System(CNS) chemo every Monday. Since NCI(National Cancer Institute doctors) had increased her chemo amounts this cycle, we will see if it drops her counts like they wanted it to. Her fevers have been gone for about 1 week and her head pain is less. They had been scanning her last week to look for hidden infections. What they discovered was an unusual looking spleen. The most logical talk right now is that it had lymphoma also, and it is responding like the kidney. Praise the Lord!

Kelsey's liver tests have been on the decrease. They will not give her the study drug until it plateaus for 3 days. Since her lungs are responding for the treatment of the Histoplasmosis and the pneumonia is finally shrinking, they have let her go outpatient. She is staying with me at the Children's Inn. Everyone is quite anxious for her to resume the study drug. It was WORKING! She ought to be returning to Muncie some time next week.

Pray for ways that Karly can be more like Jesus. She doesn't often FEEL like being civil. She did watch the Oneighty Converge Service on Wednesday night. She did sing along, and it was a great message...less of self, more of Jesus. I pray for more times like that. Thanks Sara for Skyping. It was so worth it on our end.

I ditto dad's message about the Sherpa's. We couldn't be climbing any mountain without them. Thanks for being THAT person.

Tuesday, January 5, 2010

Dad's Post 1

Greetings all,
I guess it is my task to relate the Muncie side of this mission. I do feel this is a mission. The task before our family is to trust in God enough to concur this mountain, keeping the frost bite and the altitude sickness to a minimum. Keeping with the mountaineering metaphor, I must say from the Muncie climbing face, we are well blessed with wonderful Sherpa, that keep our climb team supplied and equipped abundantly. So many beautiful sacrificial Sherpa! I am learning so much about grace and sacrifice not from climbing the mountain, although there is that, but simply by watching the blessing of the Sherpa.
The thing about being base camp is you often can't see the peak for the clouds and the storms on the mountain. We have heard rumors of the storm here at base camp. Seen some pretty nasty looking clouds hovering over the mountain. I even got to go hang out on the mountain for a few days and get a sense of the struggles there. Yeah its a tough climb, but I have GREAT faith we can summit with perseverance and the prayer of our loyal Sherpa.
Some mountaineers climb mountains because they get a sense of being nearer to God. But I can tell you, the mountain is cold and desolate. I get no sense of God by looking at the mountain or the view from the mountain. And being base camp, I don't get the option of viewing from the concurred peak. But I get my sense of God by watching the precious Sherpa, the Christ like effort they display ,and the miracles they bring to camp on a regular basis.
No climbing expedition would ever succeed without its Sherpa. And I have the best.
News continues to come our way both good and bad. Kelsey was started on her anti fungal which elevated her liver function extremely high the week before the New Year. This came with the bad news of not being able to take her study drug. This was sad because we had evidence that it was working. Reversal of the little progress it was making started the week she was off of it. We do have high hopes that she will be able to take it again in the near future as soon as her liver behaves. She had scans of her lungs and liver today. Definite improvement in the lungs. We haven't heard the report about the liver. Kelsey continues to fight nausea, but her energy levels have increased. She walks over to Karly's room to hang out with us on a daily basis now.

Karly had been having a very difficult time until we put her back on a constant low dose narcotic and started the TPN which is IV feeding. She has quit being nauseous, headache is less, fever is much less, and strength is gaining. Her eyes are open more of the day than not, she has more spunk(not normal, but you get to see glimpses of her personality), and she converses more. I am liking this. I pray that as they start to take her off the IV medications to oral versions, she will not regress. As they were looking for sources of the fever, they scanned her sinus, chest, and abdomen. The sinus, chest, and kidneys are looking good. In fact, they could see definite improvement of the lymphoma. However, the spleen didn't look normal. Actually, it hadn't from the beginning. We suspect that there was lymphoma in the spleen. They will check it again in about a week. Karly has just began to be able to eat again. She had a few pieces of popcorn Sunday evening. She asked for Ivanhoe's breaded tenderloin, tots, and strawberry lemonade Monday evening. I wasn't able to provide that meal for her, but she did want pork fried rice and that I could get for her. She ate a few bites. I suppose it just takes time to be able to eat again in any quantity. She enjoyed the 2 weeks with her family and Zach. If any of you have Facebook, you can see Tracy, Tyler, Trent, and Zach with the cutest of shaved heads. Karly enjoyed conducting the event. Sara Coggins, a friend, joined us for New Year's Eve in Karly's hospital room and stayed with both girls while the rest of us traveled back to Indiana for my dad's memorial service on January 2. The girls were able to Skype the service which made it bearable for us to be able to leave them. They watched and participated in the service via Skype. Afterwards, they were able to see and speak to friends. What a needed, timely, and awesome gift the laptop was to us. It has brought us great happiness as we are able to connect with each other nightly. Karly sparks when she is able to see her hamster, Bobby, on the screen.

Dad's service was a celebration of his life. It included his favorite hymns, stories, songs, and the infamous Itsy Bitsy Spider danced by the grandkids(girls only). People were able to share about dad which blessed the family. Thanks to all who came and shared this day with us.

I flew back to NIH on Sunday. It was a whirlwind weekend with so much being accomplished. The house which was in a sort of upheaval was put back into a mostly normal state. Karly and I left in an hours notice to come out here so orderliness was not on our minds. We also thought we would only be gone a few days. I didn't realize the stuff that I had left laying around. Yeah, it is more orderly and the family can now move on with life in a more normal state. It felt good to be home for a short while, yet it didn't feel quite like home. I think that maybe it had something to do with attachment and ability to cope with things. Tracy is doing a fabulous job handling all the issues at home. It helps that we can Skype and go over things together. Thanks to all who have helped us get this far down our journey and thanks to all who are walking this journey with us.