My dad passed away last night. I was so hoping that my dad would make it until Karly and I could return home to just spend time with him. He was a great grandpa to his grandkids. I think he did an excellent job of calling them daily, telling them funny stories, and sharing his life with them. It will be something they miss when life returns to some sort of normality in Muncie. Just another instance of God's caring for us....we Skyped my mom and dad on Friday night from the hospital. Debbie and Ridge had gotten Reid to the hospital, no small feat, so 10 of the grandkids were able to talk to him and say they loved him. The other 5 grandkids were at his house on Christmas day so I must say God's timing is so marvelous. We may have wanted him around, but God's knows and we must trust in that. Dad went very peacefully in his chair. The memorial service will be in "The Chapel" at Union Chapel Ministries on Saturday, January 2 in Muncie at 10:00am. Tracy and I have a lot to figure out in regards to who stays with Karly, but I know it will happen as it is supposed to. When you look back at the timing of things in your past, you can see God's timing. For instance, we never really felt like the girls needed a Make-A-Wish, but was prompted to go for it. It was the most wonderful time of our lives and the key was that both girls FELT like going. Who would have guessed that both girls would be so seriously ill at this time. Any other time would have been no fun..God knew. In fact, those memories are the ones that Karly can look back on when she is miserable. We celebrated my parents 50th wedding anniversary this summer, although they really didn't want a big hurrah. After the party, they were beyond words with happiness. It was perfect! Grandpa had always said he wanted Carly Simon's Itsy Bitsy Spider played at his funeral. We had thought that what a great surprise to have the grandkids and kids sing and dance to it at his anniversary where he could really enjoy it. He loved it...we had to do an encore. I suppose we should play it as his funeral too. He was able to enjoy his relatives and friends, from his college days to now. What a blessing to him, mom and us. Thanks be to God, our Father, who loves us and knows far more than we ever will.

Update on Kelsey...Christmas morning they woke her up to the news that she has Histoplasmosis in her lungs. She started on an anti fungal in addition to her other massive doses of medications. She looks better to me, but she still feels junked up from all the medications. She made it through about 1 hour of family time Christmas morning before she headed back to her room for a nap. She takes frequent naps to deal with her fatigue.

Karly has not been well at all this week. Her fevers are getting up to 105, nausea is frequent, headaches are horrid. She sleeps most of the day. She sat slightly up for Christmas morning for about 1 1/2 hours. She took a break about noon before we descended upon her in the afternoon. The smiles are less frequent but we pull a few out of her now and again. The little food that I've managed to get down her has been vomited. She is losing a lot of weight. It is worrisome to watch her wither like this, but still I trust in our doctors and God's ultimate plan through this.

The kids woke up with stockings outside their door on Christmas morning. Santa found them at the Inn. Both the younger girls had a VERY Merry CHRISTmas. Santa had left huge bags of gifts for the Koch's at the big fireplace in the Inn. Santa even knew that Alex, Kelsey's fiance, was at the Inn. Boy, the guy is smart. We shared this time with one of the founders of the Inn, Lori and her two kids, and some other Inn families. It was a happy time. Santa left a huge bag for Karly and Kelsey in their hospital rooms as well. I was amazed that he even left a gift for Debbie and Ridge, and Karly's boyfriend, Zach, who is flying in tonight to spend the next week here. Debbie and Ridge brought their clan out to the Inn on Christmas afternoon for an early meal and gifts. We Skyped Grandpa and Grandma. It was a pretty big deal because one of Debbie and Ridge's triplets,Reid, is severely handicapped. Traveling with him is hard, and he usually pays for it later. He gave me a lot of kisses...he particularly likes blonds. He seemed to have a lot of fun, and we enjoyed seeing him. BUT, what was special was that Grandma and Grandpa haven't been able to see him for a long time. Neither Grandpa or Reid can travel, so being able to see each other on the computer was AWESOME. Grandma played peek-a-boo and Grandpa waved...Reid just laughed and called Grandpa his special name "Unga". It was a touching moment. Grandpa, my dad, is declining rapidly. We hope that adding a drug will help him. He cannot get enough oxygen which makes him weak, he cannot eat much, and he feels sick to his stomach. All the kids and grandkids have seen him via Skype or made a trip to Muncie.

Tracy is trying to get the boys, especially Alex, to DC today. They have been sleepy and lazy, but Alex leaves tomorrow so this is his last chance. I hope they can get out of here for a few hours.

I hope that I will be able to get some photos to add to the blog. Stay tuned to see if my lack of computer savvy increases. Thanks and God Bless to all!

Love,
Mom

A lot seems to happen on a daily basis around here. Monday is when they put the chemo in her brain port(Ommaya). This makes the next two days predictably not so good. She has had a bad throbbing headache and a fairly high fever. She continues the antibiotics. She has a good dose of pain medication when she pushes her button. She has reached the once a week Ommaya chemo. YEAH! They will be increasing her systemic chemo when she begins again on January 1. It doesn't look like we will be outpatient for Christmas, but the Children's Inn will take care of everything. They are serving a brunch at 10:00 am, presents around the fireplace at noon, dinner in the late afternoon. We may be able to get to my sister's Sat. or Sun. if she starts having no fevers, can sit up, and keep food down. She's ending the 2nd cycle on Dec. 31, so only 4 more cycles to go.

Kelsey was here for a short trip last week. It went OK, but she hasn't been feeling well...very tired and hurts in the lungs and back. She left last week with an appt. to be outpatient this week on Tuesday. She presented with a pretty high fever and pain in the lung and back that still hadn't resolved. They took a CT of her chest and X-ray of her back. She has a diffuse looking haze throughout both lungs, particularly the left one and white spots throughout. They admitted her last night. This morning she had a bronchoscopy with biopsies of several areas. She is resting today waiting for some sort of diagnosis. What is really weird is Karly had this kind of looking lungs several years ago, and we never figured it out. Kelsey's lung issues seem to be worsening on a steady basis. With Christmas in two days, we most likely won't know anything until next week.

We thank everyone who has contributed to our financial situation. We have been able to purchase Christmas gifts, use gas cards for the long trips to Maryland by van, eat, take care of bills, and feel like things are taken care of. We are so......it is hard to explain.....AWED! Beyond belief that this is happening to us, but yet we are so at peace. I feel very relaxed with things even as they change day to day. My emotions are raw. Both girls are so courageous and are such a witness of strength and grace of God's love. Having the whole family here has been fun. I see Karly having emotions of laughter, spunk as she hits her brother Tyler as he tries to feed her, smiles as she watches the Facebook of her friends shaving their heads(by the way it is awesome and you all look great), giggles with her cousins, smooches with her parents, and sharing goofy youtube videos with her brother Trent.

Hey, my girls at the office....I tried to call you today but noticed it was too late to wish you a gigantic Merry Christmas and Blessed Happy New Year! Thank you sooooomuch for the huge box of stuff, $$, and loving notes. I was greatly blessed by your caring for Karly, my family at home, and me. You have been awesome!

In case I don't get back to you before Christmas, the Koch's extend everyone the deepest feelings of joy and love for this season of Christ's birth.
Love,
Tracy, Tammy, Kelsey, Tyler, Trent, Karly, Konner, and Kassidy

A week has gone by. It seems like it went fast. The week was filled with just taking care of Karly. When her Ommaya Reservoir is accessed with the chemo, 2 days of yuk follow. She is sick to her stomach, tired from the drugs, can't eat much, has trouble taking her pills, and overall feels crummy. I keep hoping for that one day where she will sit up, feel good, want to eat, and go out to do something. We pushed it a little on Wednesday when Aunt Debbie and Deana came. We had planned to go out to eat and find that perfect wig. The doc had stopped her constant dosing of pain medication while she was sleeping. When she woke up, she was in alot of pain. We let her push her button dose of pain medication several times while waiting on a pill so we could go out. She got herself ready and tried really hard to push through the pain. We got her to the wig store, but it wasn't too much fun. We did find a long blond wig that will need a good stylist to cut it the way Karly wants it. This makes me nervous because I don't know any here, and they get only one try. My friend Pam may have a contact that hopefully will be able to point us in the right direction. We didn't make it to the restaurant, so we ordered it to go and ate in her room. Thursday, was another day for the Ommaya, so it has been bad since then. Please pray for strength. She was wobbly yesterday when she was holding her drink. I have no idea when she will be ready to be an outpatient. Everyday, we wait for a good sign from her that she will be able to handle life on her own. We had a pounding of snow on Saturday...probably about 12"....but I don't know the real amount as reported from the weather service. I got a ride from the NIH police between the Children's Inn and hospital. The Children's Inn offered to house the pediatric nurses last night. It was very thoughtful of them. Today people are here, shoveling and clearing the campus. I am looking forward to my family arriving tonight. I need a reprieve, and she needs the laughter and distractions. Tracy and I hope to make it out tomorrow to do a little shopping. I bought a few things online, but haven't found everything needed yet. I don't know the area very well, but when Pam was here we learned how to get to Target, Kohl's, and Lowe's...three of my favorite stores.

Kelsey was here for a whirlwind visit Tuesday night and Wednesday. She tried to do her manometry appointment, but they got the scope to about her sternum, she had to cough hard, her back spasmed or strained. They had to pull it out and will try again in the future. Since then, her back has been stiff. She completed her study drug and barium swallow. She finished moving back home into her newly renovated room this week. She has appointments here on Tuesday all day, and takes her study drug on Wednesday. I think the 10 hour trip will be hard on her body. The Inn gave us enough rooms to be comfortable. This is a blessing.

Our friends, the Reads, stopped by on Thursday morning on their way to Florida. You would have to know them to know how this works for them. Anyway, Carmel had put the word out that Karly and I could use a laptop in her room so we could Skype home and friends. AND be able to do school later...DVD, CD, papers, etc. I know people donated to this need and would love to know who you are. It has been a complete blessing. We have Skyped several times. She was able to see her hamster, see her brothers and sisters, and enjoy being herself for a short time. This will be a well used tool for us to stay tuned into the world of our friends. Thanks for taking care of this need.

Sorry I don't feel very chatty today. I have a cold or sinus trouble. I have to wear a mask while in her room. I pray this passes quickly. I must go over and see her now. Catch up later. Love to all of you, Mom

Karly has slept most of the day today. Her stomach has been unsettled and threw up one of her medications. She will need to re-take it shortly. It is one of the meds for the cancer regime. Her head is still not as bad as it had been, so I am still thinking her leak is on the mend. Aunt Debbie brought homemade turkey and noodles, so Karly has been eating them every day. It is a special treat. She brought taco meat also, but Karly hasn't gotten to it yet.

Her room is the nicest on the floor, at least I think so. Pam brought Christmas decorations including a beautifully decorated, lighted tree, a glittery HOPE sign, wreath, and two strands of mini lights with greenery, and on a daily basis we are grinning at the beauty of it all. I think the nurses stop by just to be in the room. It is so positive. In fact, one just came by and repeated what I just wrote. It has been confirmed!

My sister, Angie, called me awhile ago with another story of outpouring love from a family up in her area. Not only did they contribute to Be The Match, but as a family have decided to give what they would spend on Christmas to us. "For unto us a child is born, to us a Son is given...," quotes Isaiah 9:6. They have taken the "unto us" and made it "into us Jesus was given". They are being Jesus to us in a way that they can. We have never met them, but the Jesus in them is outpouring love to us in a tangible way. I cannot even speak the story without crying. I am feeling such overwhelming love.

On his way home from church today, Tracy was contemplating what to fix for lunch. He was greeted with a home cooked meal when he entered the house. What a blessing! Thanks Kelly...again!

"And He will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace."
and so it is, here in Maryland.
Love,
Mom

I woke Karly up this morning at 5:00am to get her ready for the Fantasy Flight excursion. She seemed eager to go. We had laid her clothes out last night. We boarded the shuttle to Dulles Airport. Upon arrival, we boarded flight Sleigh Ride 1 to the North Pole. It was actually listed on the Departure Board. We left the gate at 9:15 for a 45 minute flight to our destination. The window shades were drawn so the location of Santa remained secret. When we arrived, there were many groups of singers, dancers, craft and food tables, Santa, and Mrs. Claus. It seemed mostly geared for the younger kids, however, we had fun. Karly and Santa had a nice conversation about something secret, I think about me. She giggled. We were given a photo of her and Santa. She received a nice bag of gifts, made a few crafts, and sampled a few foods. We arrived back to NIH at 1:30. She was in a wheelchair the entire day. She was very tired, but she didn't complain about her head aching like it has been. This may mean she won't need the blood patch. She has slept the rest of the day. By the way, I braided her thinning hair, put a soft, cute hat on her, and she looked amazing. She has only dressed for two occasions since being diagnosed...Thanksgiving and Fantasy Flight. Tomorrow should be a very low key day. If she is feeling better, she has many crafts to work on....courtesy of Kelly.

Many of you may not know this, but one of my many projects that was to be done after the donor drive was redo our guest room for Kelsey. She had decided to move back home until her transplant was over. Our house is 50 years old and the carpet and paint hadn't been updated in a long while. For the sake of her health, I wanted a new floor, paint and fresh look for her. It was to be a surprise. When I found out that I wasn't going to be home for so many months, some friends asked what they could do to help. I asked if this was something they could do. My dear friends Carmel and Kelly took hold of this project. We secretly quizzed Kelsey when she was out here about colors. Karly helped make some decisions. I believe I can report that the room is now finished. Kelsey showed up at our house yesterday unannounced which is fine. She discovered the secret plan, and Kelly called me. We let Kelsey know that the renovations were just for her. I think the girl was shocked and awed. That was the expression I was going for. God is using His people in many different ways to bless us and help us. I really cannot think too much about what is happening at home or I get overwhelmed. However, Tracy and the family are more than surviving thanks to all the people helping out.

Tyler's situation with the car has turned out beautifully. He can now get himself home and back again when he needs to. My total attentions can remain on Karly. Many thanks to his professor.

One prayer request that I can think of right now is for my dad. He needs his health restored. Wisdom for the doctors. He came close to death while I was in Kazakhstan in October. I cannot fathom a funeral in the midst of all this, and it would devastate Karly.

Kelsey still has not been able to take her pain medications. Life for her is a struggle. I pray God finds many creative ways to bring a smile to her face and to take her mind off her pain.

Christmas is approaching, and we will be finding ourselves together in Maryland. We do not know where we will be...either at the Inn or my sister Debbie's. BUT I know it will be a praised- filled, belly-laughing time with all of our family here...maybe some friends too.

Feel free to comment. It is always a blessing to here from you.
Love,
Mom

Karly's lumbar puncture on Monday went well. We just received word yesterday that the spinal fluid they tested on Monday is clear of lymphoma. Praise God! She was scheduled for a blood patch to repair the spinal leak on Tuesday, but she had a fever, and it was canceled. Her fever cleared long enough for the surgeon to put in the Ommaya Reservoir on Wednesday. She woke up with an immense amount of head pain. Her head still throbs and aches even today, but most likely from the spinal leak. She had her first chemo through the brain port on Thursday. She didn't feel anything and much preferred this method over the spinal tap. The blood patch was rescheduled for this morning, but she had a fever last night, and it was canceled again. Her second cycle of systemic chemo was started today. For the next 5 days, it runs non-stop. I still pray for the leak to repair itself over the weekend. If on Monday, she still cannot sit up, then we will try to schedule the patch again. They usually don't do much when on chemo because her cells deplete, and she becomes very susceptible to infection. Karly had one of her better days on Tuesday where she sat up for several hours, took a shower, and we wheeled her over to the Children's Inn to shop for her brothers and sisters. She enjoyed the brisk air and getting out, but we wore her out. So much for washing her hair because after the surgery on Wed. they had her hair all mucked up with bacitracin. She is quite the grease ball and cannot get her hair washed for about 1 week. Her hair is falling out, so one of our priorities is getting to the wig store. Until then, we got some cute, tight fitting hats. She is still sleeping today which is for the best. Pam left this morning for Manhattan to visit her sister. My sister Deb drove up for the day bearing good gifts....fuzzy lounge pants, hat and scarf set, fuzzy soft footies, and fruit roll-ups, gushers, and homemade turkey & noodles, and taco meat for nachos later. We have done a good job of stuffing her with food. The scale said she had gained 3 pounds today. Way to go mom, Pam, and Debbie! Pam spoiled me with company, food, distractions, and outings. She especially spoiled Karly with back, arm, foot and head massages, Chinese food, laughter, and on the last day she really went above and beyond and spent 5 hours on a mission. Karly had a very bad day on Wednesday after the surgery. She was emotionally spent. I had to remind her of all the happy thoughts stored away for times like these...like her family, her hamster, her friends, Zach, volleyball, dance, and the cruise. This really helped her, so I had some help at home to get ahold of her photos which were on my computer. This turned out be quite an ordeal. The computer at the hospital and Children's Inn are blocked from many things including using flash drives. Pam had to get an IT guy to allow access to download the photos onto the flash drive. She went to Target, got all the photos, bought a photo album including stickers, returned with hours of fun for the future, and all the happy photos. She went through them last night. It made her so happy.

Kelsey's week hasn't gone very well. She returned home on Saturday, Dec. 5 with much delay from the weather. After she left the hospital, we found out that her liver counts were very high. She had to get her blood drawn at home on Monday, Tuesday, and Friday. Since her counts were on a downward trend, they allowed her to take the study drug on Wednesday. They will continue to monitor this closely. Because they had to take her off all pain medications, she is really struggling with pain. She flys out here on Tuesday and returns on Wednesday if all goes well. I plan on talking with the stem cell transplant doctor in a couple of weeks. Another piece of good news we found out this week is that the 2 people in Germany that were suspected of having Dock 8, in fact do have it. That's not the good news though. Both individuals were tranplanted, one 4 years ago, the other 1 1/2 years ago, AND both are doing fabulously.

I must go help her so more later. There have been many blessings, and things to be thankful for, and more of God being God in the midst of this struggle.
Love to all,
Mom