Sunday, December 27, 2009

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.

Saturday, December 26, 2009

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!


Wednesday, December 23, 2009

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 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.
Tracy, Tammy, Kelsey, Tyler, Trent, Karly, Konner, and Kassidy

Sunday, December 20, 2009

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

Sunday, December 13, 2009

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.

Saturday, December 12, 2009

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.

Friday, December 11, 2009

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 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,

Sunday, December 6, 2009

Karly entered her Neutropenic stage on Saturday. This simply means that she cannot fight off infections. The volleyball girls, Lora, Sami, and Grace had to wash their hands frequently. No flowers, skinned fruit, or foods that have set out can be near her. Her counts have started on the rise today, so hopefully she will be out of this stage in the next few days. She is scheduled for another lumbar puncture with chemo on Monday, surgery on Tuesday to repair the lumbar leak, and surgery on Wednesday to put in the Ommaya Reservoir. Her first chemo in the Ommaya is on Thursday. Her next round of systemic chemo begins on Friday. I signed her up for the Fantasy Flight on Saturday so I pray that she will feel like getting out and is able to get out. This Fantasy Flight is: get on a shuttle from the Children's Inn, ride to Dulles Airport, board a plane, fly to the North Pole(don't know if we actually go up in the air or just drive around), get out at the North Pole, receive gifts from Santa and his elves, and fly home. It should be fun. I hope her cousin Deana can go with her. Karly had a lot of fun with her girlfriends and was sad to see them leave. My friend is still here so we won't be alone this week. Pam offers distractions in many ways, and if you know her you understand what I mean.

Pam took myself and Kelsey out Friday evening(Karly had her girlfriends) for dinner, pedicure, and manicure. It was the first time I had either. We laughed alot and loved being pampered.
Kelsey flew home yesterday. However, after she left the hospital we found out that her liver counts were way up. I won't know the outcome of this most likely until tomorrow. She is getting a blood panel today at BMH. Pray this is not a side effect of the new study drug. They haven't seen this as a side effect, but no one like Kelsey has ever taken it. We really want this drug to work.

My sister Angie's donor drive was a success yesterday. Many people attended, got swabbed, and worshipped with the bands she had arranged to play that day. Tracy said the worship was awesome!

My worry level goes up and down as news filters in, but I am feeling rather at peace through most of it. I am actually having fun watching God work through His people. Most of you know that my son Tyler was hit on 465 going home from the Muncie Donor Drive on Nov. 15(not badly hurt). At first we thought he was hit by an uninsured motorist, but found out 15 days later that the guy was covered, his insurance company took liability, and everything is working out. Tyler was praying this past Thursday night about how cool it would be for God to give him a car for his birthday(Dec.5). But then thought that wouldn't happen. Well, on Friday his professor called him into his office and gave him a car. WOW, the power of God is awesome. Also, the same week a girl he knows from Germany told her dad that all she wanted for Christmas was a swab kit. AND, the Wabash Senate donated over $1000 to Be The Match for a second donor drive on Wabash's Campus. AND, there was a packed crowd all day at Applebee's in Crawfordsville for a percentage to go to Be The Match. After all the bad days he had already had in the past month, God rained so many Blessings down in one week. This is the undeniable work of God. When all seems lost, or hope is failing, God's power becomes so evident. It is when we are most out of control and willing to let God work, that we see His work. His unfailing LOVE is abounding all around us. Mom

Thursday, December 3, 2009

I continue to be awed at God's presence and timing through this reality that still at times feels like a dream. Karly continues to be in a great amount of pain from the lumbar puncture on Nov. 25. She must remain flat and when she sits up to take a medicine or use the bathroom, her head just wants to explode and gets nauseous. Everyone is sure it is a lumbar leak which cannot be repaired until after the last lumbar on Monday, Dec. 7. We hope that the last lumbar will indeed be on Dec. 7 with the Ommaya Reservoir going in on Dec. 9. Her spinal fluid volume in the area to be accessed is reduced because it is leaking out. This just complicates things because they want to take out 5cc fluid when they put in 5cc chemo but there isn't enough fluid to take out. We had a very good(probably the best and most experienced doc) who assessed the situation and will make a report about this for the next guy. They will try a different space on Monday, and I pray that it goes without incident and it is her last one. I am always praying for wisdom for me and the doctors. I pray for peace and rest for Karly. She is so courageous!

Kelsey was having a painful morning. Her port area is quite sore, her head just aches, as well as her body. They started the drug yesterday and all went well. The plan is for her to still come home on Saturday.

Pam took me out yesterday for shopping and eating out. She bought more Christmas decorations for Karly's room. It is looking like Christmas around hear. Probably more here than at home in Muncie. In the evening when we have the room dark, it is aglow with twinkles of brightness, happiness, and hope. Thank you Pam! Thank you Tim for letting me have her for now.

It is disappointing to not have Karly feel well enough to play games, or go shopping, or take a walk(today it is sunny and warm around 62) but isn't patience a virtue so we are being virtuous around here. I am learning to be still...this one is hard for me. Those who know me understand that one. Oh yeah, did I mention patience. Another hard one for me. I will tell you that the Lord indeed is having His way out here in Maryland. Praise Him! We are at a place where(physically and mentally) we are NOT in control. Praise be to Him that He is!

Thanks to His people for listening, caring, and praying for us!

Wednesday, December 2, 2009

Hey Everyone(does this sound like an easterner),
I've been at the National Institutes of Health since November 5. It was a tough time not knowing what was wrong with Karly, watching her suffer in pain, going through the tests, and watching her loose her right facial movements. I spent a lot of Internet time looking for answers, and ultimately that still small voice was telling me something serious was happening. We didn't want to look there or think that this was something more than a virus, but as her degree of symptoms increased the more obvious it became that it was something serious. Through the instinct of knowing my child and God being in control, I was able to find and work with our Dr. to discover that missing piece of the puzzle. She was not presenting with any of the normal signs of cancer at that time, yet we were led to look in her abdominal region(mind symptoms in her abdomen) where the large masses in her kidney were found. She has Diffuse Large B-cell Lymphoma. Her type of cancer is aggressive, yet the type of B-cell affected is the good kind to treat. Although this is not a diagnosis we ever thought we would be facing with Karly, we will stay strong in faith and trust Jesus. As her team of lymphoma doctors say, "She is receiving the state of the art treatment for lymphoma." They have every confidence in a good prognosis. They have never treated someone with a Dock 8 mutation, however have treated rare immunocompromised patients with a great outcome. Her cancer is stage 4 because of the locations in which it was found, namely brain, kidney, bone, and along the mandibular nerve. She has completed her first 5 days of systemic chemotherapy, and two chemo treatments in her spinal fluid. She will be getting an Ommaya Reservoir, hopefully, on Dec. 9 so we need pray for her counts to be up so we can proceed with this procedure. She will continue a very aggressive regime for 4 months. We will be staying close to NIH for all her medical care. Our plan is to live with my sister, Debbie, about 1 hour south of NIH. Although she is having the state of the art treatment, ultimately her healing will come from God. Prayer will be the success for her treatment for by His stripes we are healed. Our friends, family, and even strangers have been supporting us as we climb this mountain. Our faith can help us move mountains.

Jeff and Zach Beeson came on Nov. 21 to keep us company. They came bearing a plethora of gifts and provided good food, great company, and plenty of distraction. We were able to celebrate Zach's 16th birthday on Monday, Nov. 23. His dad left on Monday, and Zach stayed and traveled back to Indiana with my family on Sunday, Nov. 29.

I was excited to have Kelsey and Tyler join Karly and I on Nov. 23. Karly perked up and loves the distractions. Then, on Nov. 25(my birthday), the rest of the family joined us at NIH. We were all able to go to the Gilley home(my sister's house) for Thanksgiving. Karly hasn't been able to sit up(lumbar tear) since Nov.25, but she enjoyed the awesome tasting food. She has been given a pain button which allows for better pain relief until her body heals the tear or it can be fixed.

Kelsey came in to NIH with pneumonia. She has been treated for this and tested for many other viruses and bacteria. She had 3 skin biopsies. They are using these to confirm molluscum on her skin so she can start a new protocol and new drug today. Everyone here is quite excited about the outcome of this drug including Kelsey. She will need to return here every two weeks for follow-up which includes bloodwork, pictures, curretage, and taking the drug. We are still waiting for the outcome of the donor drive, but we trust God with the timing of this transplant. Hopefully Kelsey will be returning to Muncie on Saturday, Dec. 5. By they way this is Tyler's 20th birthday and my sister, Angie, is holding a benefit concert and donor drive for the girls on that day. Great birthday present for Tyler. Yesterday, she had a power port put in her chest and an endoscopy where they took several biopsies. The GI doctor would like her to join his protocol to work on diagnosis and treatment of Eosinophilia type disorders. She's still thinking on that one.

My friend, Pam Cullison, came on Monday, Nov. 30 from Evansville, IN. She is full of life, loves to play games(extremely competitive), adventurous, and decorated Karly's room with a Christmas tree and other festive lights and displays. We will all be getting pedicures, also. She brings a lively spirit and laughter to both girls. I love having my friend here to talk with and cry with and laugh with. Thanks Pam!

Karly has a van load of volleyball girls coming Friday for the weekend. The parents of one of the girls are driving from Indiana. Karly is very excited about having girlfriends around. More on that after the fact.

All in all we are doing well, people are helping at home which helps me not worry about my family at home as much. Our spirits are hopeful, we are courageous, and the fight is on. Thanks be to God and to His people!
Blessings and heartfelt thanks,

Tuesday, November 17, 2009

So, Heres the skinny on what happened Sunday :)
On Sunday woke up to feverish, swollen eyes, skin, pain...devil hatin on me makin me miserable.
But I woke up with a song in my heart from the Lord again! He has such a sweet voice... well the one I hear for encouragement anyway. It takes me 2 hrs to get ready, the norm shower of course, but then I have a whole routine I have to do, med stuff, fun stuff :\ So it was early.
But I got the church on time with Alex, cuz he had to report to one of the stations. Already people from our church were filling out forms for the swabs... and this is before 10am!
Not long after 10am the waves of people came to both buildings at the several stations that were going. During the morning I met with some girls from Ball Bearings that were taking pics, asking Q's and setting up a time for a formal interview. Star Press sent someone to take pics.
Strangers, it seemed like hundreds, would come up to me and ask questions, converse, shake my hand and/or hug me! All the people that helped with set up, planning, or working a station were crazy busy, but beaming! God was sustaining such a positive attitude throughout the whole event.
At this point I want to tell you about the stats. When my mom had first talked to the Be The Match contact she originally said 400 kits would be good, and a goal of $10,000 to cover those kits. We decided we wanted 600 so she said thats great, but a lot, so we would probably have plenty left use elsewhere!
Well, while I was campaigning/spreading the word I had a chance to talk to several full classes thanks to involved professors. I was also able to get in the paper and on several radio stations before the match drive. At a few points in time while discussing the amount of kits with some profs and some students they started encouraging me that 600 was not enough... that we needed more! Encouraged by this I told my mom over the phone about the conversations, and not to under estimate. I said it is better to be safe than sorry. So she contacted the lady at BTM who thought t was incredible, but sent 200 more kits! Get ready for this next part... Here is God's provision...
We used up ~860 kits in those 6 hrs...and when we looked in the last box there were 12 kits remaining!!! We used ALL 800 and got over 70 extra from where we know not!!! Tears flooded my eyes! AND THEN I heard the count on the money. We were shooting for $10,000... We raised over $25,000!! in 6 hrs!!!
And to this I say
DO NOT PUT LIMITS ON GOD or what He can do through humans... even though we are small, HE IS INFINITE!!
My mom was in tears when we were able to tell her how everything went. Our family is so touched! We are so blessed and feel so much love. We encourage you all to keep praying, and know that we feel your prayers!
But this is not the end.... No this is just the beginning. Karly and I must still battle every single day. So, we are still pushing for more people to keep registering. The more that register> the greater are our chances at a match!

Thursday, November 12, 2009

I have again been meaning to post here a little more often... it just doesnt happen.
Some good news about the Donor Drive that is just days away is: Sooo many people have been asking me questions, want an interview... professors want me to talk to their classes! I wouldnt have it any other way, getting Karly and my picture in the paper, on fliers, people are hearing our struggle. I have an on air interview for a radio tomorrow (Fri) morning and just got off the phone doing a recording for MOODY radio. People are even trying to get us on the Oprah show! Crazy I know.
Some unfortunate news is that it is looking like Karly and mom will not be making it back for the Donor Drive. Mom says pretty much everything has been worked out and taken care of, so I shouldnt have to worry about anything that day... .. ...
But I want them there! I am saddened they will not be there; mom had me tearing up on the phone while I was trying to drive :(
Its been a crazy week so I feel exhausted...worn.
This morning I had every intention of meeting with someone, but I had to rainheck and make a diff time...just felt awful, eyes swollen, skin, etc. I finally was getting showered and waking and then a song started playing in my head. God was singing to me the song Stay Strong by Newsboys. Here are the lyrics:
You're in the moment now
A bitter rouse
A wandering eye and then
The ties that bind start wearing thin, within

You're in the moment now
When all that you've been blessed with
Is not enough
Here's where the ground gets loose
Here's where the devils call your bluff

Stay strong
You are not lost
Come on and fix your eyes ahead
There's a new dawn to light our day, our day
You've gotta stay strong
You and I run
For the prize that lies ahead
We've come too far to lose our way, our way

We've seen the tragic flaws
The tortured souls
The saints with feet of clay
Here's where sin becomes cliche'

We've come through wilderness and watched
The cloud by day
The burning sky into dawn
Have you forgotten who you are?
Did you forget whose trip you're on?


Get up, there's further to go
Get up, there's more to be done
Get up, this witness is sure
Get up, this race can be won
This race can be won

We've gotta stay strong
You are not lost
Come on and fix your eyes ahead
Our Father's dawn will light our day, our day
Come on and stay strong
His grip is sure
And His patience still endures
There'll be no letting go today, no way

Come on, and stay strong
You and I run
For the prize that lies ahead
We've come too far to lose our way, our way.

Can you hear what He was speaking to me? In the bridge- Get Up, This Race Can Be Won!
I will bring Him glory in this battle, because His will is being done... "Everything works together for the good of thos who love the Lord!" Romans 8:28.
Stay Strong! His patience still endures... That is a great thing because mine runs low, I need His!
So many encouragements I heard in that song, I started to praise and dance in my one else here, but the room was full! :)
That is what I had to share with you all. Hope it encourage you!

Sunday, November 8, 2009


Wow, so I have not blogged in here for a while. Sorry about that. I am just not good at writing, nor do I really enjoy it.
There are many reasons to why I have not updated in a while. But anywho you shall get the gist of it as I go.
A little over two weeks ago during my 1 or 2 days of Fall break (while my mother was still in Kazakhstan on a missions trip) and also while I was @ NIH(Maryland) for that break, my grandfather (my mothers father) was taken to the doctor by my grandma. The doctor took one look at his stats and said take him to the hospital now. So, they went to the hospital. My family about lost my grandfather that night, and the next night was close as well. Luckily, with many people praying he pulled through... However, he is on hospice now :(
Part of the stress was the fact that for many of those days mom and I were not even in state; another was that both Karly and Trent were sick (pukey, fluish sick), therefore could not visit grandpa; nor could anyone from our household for fear of giving him something. We were all powerless and helpless.
God was there... or I wouldnt be writing this.
Next in line... My sister!
We have chronic pain... SOME of this is from our sinusitis (chronic sinus infection basically), and frequent ear infections(otitis media)... all this causes frequent headaches. Common colds-PSH...whatever wimps. We have very high pain tolerance... but Karly just this past week started experiencing some major headpain, and to make things mysterious, double vision. We called our NIH doc after she couldnt shake it after 2 days... on the third day our doc told us to take her to the ER.
Normally, for any person this is a good idea. However, everytime Karly and I hit up the ER we get into more complications and pain in the you-know-what, and no answers. Doctors trained in ER techniques do not have the way of thinking nor the history they need to treat patients like Karly or myself. We are just too rarified. Underestimations are the understatement... even when they try and act smart and nod like they know what we are telling them.
Her visit was ridiculous and made me quite furious, after my mom told me everything that happened late that night. I will not go into it, or I will get all hyped up again... but it was unacceptable... as predicted... which is why I refuse to go to them now!
They went to the ER in the evening, got back from it in the wee hours of the morning... I spoke to my exhausted mom on the phone a little after lunch the next day while she was driving on the way to the airport. Guess what? My doctors, after talking with the ER resident doc, didn't like it either!!! HA! So, my doc had Karly and mom on a plane to NIH (Maryland) ASAP. When they arrived and were signed in, Karly was immediately given the MRI (she should have had!) with contrast. As of right now, they see nothing out of the ordinary, for Karly, on the scan. She had plenty of blood taken, saw a neurologist and optometrist, and had a LP (lumbar puncture). She had good spinal fluid from what we know so far, and her eye pressure was good, preliminary blood results dont show anything weird yet. As of right now, we dont know whats up. We can only pray.

During all this the stress has been beating me down. My health is precarious and sucks already... this week I have not managed my class load, and have been in bed way to stinkin much. But all I can tell myself is that I have to... if I want to keep going. God is certainly sustaining my family. And we are breathing miracles every day.
Last week, one of my friends asked if I would go to his church and let some people lay hands on me in prayer. It was powerful. No instantaneous healing... but peace and encouragement needed. The healing will come. And that is what I want to say before I end this.
There is going to be healing... some say forget the doctors and look for instantaneous healing or healing in a little while over time... some say I am already healed and have not accepted it... whatever.
I am telling you... I PUT NO LIMITS ON GOD... he could have "healed" me years ago, he could "heal" me tomorrow... or he could be using this rarified situation, this almost experimental procedure for my case to give hope to the next few cases like my sister, and "heal" me in the process... OR he could chose to take me home and I would be "healed".. out of this gross earth suit to something much more fitting :)
I am in his hands and have given this to Him years ago. Karly is in His hands, my grandpa is in his hands, my triplet boy cousin is in His hands; this family is firm in the faith of Christ's blood and its healing power. And wherever He carries us, is where we want to be! :)

Monday, October 19, 2009

Hi all!
So, several people have asked me about what it takes to be a donor marrow match.
Bone marrow contains the stem cells.
Even though the donor will not have to go through the painful bone marrow extraction that used to be called for. The newer way to extract the stem cells is much like taking a blood donation. Yet, matching for marrow is more complicated than just blood typing. If it was that easy I would be an easy fix because I am O+(which is a common blood type).
Although I do not know all that is being matched up and compared I do know a key thing that they are looking for.
There are lots of sites, receptors, etc at the cellular level of DNA, one of these markers is called HLA (human leukocyte antigen).
Depending on the patient and how fast they need the match can determine how close the match is going to be, for the most part.
If someone needs a match pronto/ASAP there doesnt have to be 100% match up... but this is preferable of course.
Many things can go wrong with not being able to match as many markers/factors as possible. Just like any transplant there is the risk of rejection or graft vs. host.
These situations have to do with either my body not accepting the new cells as my own, which can lead to my body destroying the new stem cells in complete rejection, then I have no good cells :(
OR the new stem cells introduced into my body see the last remnants of my stupid cells as bad and kill those... either way that kind of war going on confuses the immune system- no work gets done, and cells are killing off precious cells. Without these cells a body can not fight off the everday germs that people are used to living among... leaving it vulnerable and easily able to contract any little illness, unable to fight it off, and then die.
As you can tell it is imperative that a match be as close as possible, and it is a very nit-picky process, much more than just blood typing(not that I am saying blood typing isnt important or nit-picky in its own setting).
So, now, with all that being said... GET AS MANY PEOPLE TO BE DONORS as you can muster... Or if they can not register to be a match, they can help pay for someone who wants to be a match but unable to pay for a simple donor kit. There are people out there, not just me that need a close match, and you or someone you know could be it... could save a life... or my life!!!!!!!!

Sunday, October 18, 2009

Had a really rough day(for no reason but bodily failure). Most days are not great, but today was specifically bad because I could not even make it to work. Ive been able to endure working through cracked ribs, double ear infections, chronic sinusitis, burnt flesh(from UV treatments), and flu-like symptoms from meds I had to take over the summer... I just cant really even start to explain today.
Woke up and everything was swollen, red, uncomfortable(understatement), skin was on fire and itching at same time, lots of pain, exhaustion...You might ask where? answer: everywhere, head to foot, finger to finger. I tried so much to get things calm enough so I could go to work... nothing worked, and that was like 15 hr ago, and things are just not much better. I took meds and tried to sleep and see when I woke up if things would be better... ugh no such luck.
Just a couple extra stressful situations thiss week... I leave for NIH Bethesda, Maryland on Thur, mom is gone off to Kazakhstan, school is bringing more stress to a full plate, cant I chew and swallow?
I just read a long story from a friend that posted it about Eleazar and a mother and 7 of her sons... it was difficult to read. Very gory-fied and yet glorified. The main characters suffered great torture because a king wanted them to eat pig and other defiled idol meat...
Ridiculous... but so is my circumstance. I do not see why Lucifer must keep on the torture- can he not see that as a christian- strength is from the Lord, peace, perseverance, and simple human hardships can not take those, can not break the bond with God? It ridiculous, and yet it goes on. At the end of each martyrs life, while flesh and/or entrails dangling, blood flowing, bones broken they affirmed the loved ones watching and rebuked the king and soldiers by restating that they will have forever in heaven, that God is being given all the glory, and that the kind will reap his reward in the eternal pit of fire/agony in hell.
I feel I must say, this is quite extreme but there are similarities... God is getting the glory, he stays my heart, soul, life... while there is always such depression about me...clouds and rain do pass. I am approaching a Light... and those who believe and pray with me do also :)
Thank you for your prayers...yet another day of torture and glory pass :)

Friday, October 16, 2009

Hey peeps,
This is my attempt of trying to blog... bare with me ;)

So, I am not sure what to really blog about first. Maybe I will start with some history. I might end up doing little tid-bits about me per blog...

Nearly 22 years ago on a brisk night, in the wee hours of the morning, was born a blonde headed baby girl.
Beautiful in her parents eyes, but a handful of a baby. And I really was...
At only two weeks old I already had mysterious, persistent eczema, horrible bowel movements and lots of crying.
I was allergic to milk, and the doctors said that I was too young to really know that...
Unfortunately, throughout the years, by testing and trial and error I have learned about the plethora of allergies I have... these allergies have several reactions. Some reactions are mild and give me rashes all over, others are
severe cramps, diarrhea, vomiting, migraines (all which can last for several days) and swelling to whatever touches the allergen(including skin)- swelling of esophagus or trachea(asphyxiation) and pain.
To name a few of the major allergies: milk (any products containing it), egg (any products containing it), peanut (I stay away from most types of nuts in general), legumes (beans and peas) and various sea-foods... to name a few :)
Seasonal allergies, you name the pollen, dust particle, pet dander, etc...
I'm also allergic to one of the superdrugs called Vancomycin, and all basic Penicillin and Sulfa drugs...

Okay, enough of the allergies... now to post... give me some idea to post about. I don't know if you want to know this stuff, or about the procedure/surgerys I've had done... but I will be talking about NIH (the National Institutes of Health), and what is to come... stay tuned and Jesus Loves You! Keep the prayers coming!

Friday, October 9, 2009

Hello from mom. This is new to me so I'm checking out how it works. Hang with us as we get better at it.