A couple things have struck me through my devotional reading. The first being how our mind focuses on things. It is a choice whether we see the darkness or the light. I know I hear the negative thing and even play through my mind what this could mean, but ultimately, I turn my mind to Jesus. Thankfulness is the key for bringing the darkness into light for me. When you look around or think about all that is around you, you can find countless things to be thankful for. If I stay focused on "fixing" what is wrong then my mind whirls in the darkness of the situation. It may not come easy some times, but it is a discipline worth learning. The second thing is that we do not know the outcome of any situation, but we do know our ultimate destination. "Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory." Psalm 74:23,24 This verse became quite clear with Kelsey. Jesus had her by His hand and did take her into glory.
Karly has not been very well. I know that we aren't going to get her very well physically, not by human standards anyway. She is growing bacteria in her lungs and sinuses that we cannot get rid of. We are trying an antibiotic irrigation through her sinuses in hopes to keep her off IV antibiotics. She is already doing an antibiotic nebulizer for the same purpose. The Interferon Alpha is at such a low dose we are not seeing any reduction in the molluscum. The acid she was given doesn't seem to work at sloughing any off. Her neutrophil count is coming down from the Interferon, so really don't know if she will be able to increase the dose let alone stay on it. At the last cancer screening where they take CT's of her chest, abdomen, and pelvic regions, the stomach appears to have worsened in an area they saw last October. Therefore, the GI team will be performing an endoscopy on May 9 to look at and biopsy it. Also, at the last visit, ENT found an abnormality on her epiglottis. If it is still present, hopefully at the same time they can get a piece of it to figure out what it is. She is very tired which is to be expected from her neutrophils dropping and the amount of disease in her sinuses and lungs. Her headaches are getting worse again. None of this news has been reassuring and has left Karly pretty worried. Please pray for her mentally stability and physical healing. The good news in all of this is that the cancer team is not worried about cancer. She has been able to keep catching up with her Ivy Tech class, go to outings with friends, attend her senior trip to Chicago last weekend, go to a retreat this weekend, prom is next weekend, finals the week after that, and a senior banquet. Life is moving on, and she is living it. Her brother's graduation from college is coming up and so is her high school graduation. She doesn't have time to be sick, so we are just putting that on the back burner.:) Everyday is a day to be thankful for. We covet your prayers always!
Love,
Mom
Friday, April 20, 2012
Monday, March 19, 2012
Still Dancing Through The Rain
I have been in a state of not knowing what to post, and since I rely on God to give me what to say, I felt like I shouldn't be writing. I don't know if there is such a thing as a quick update but since November here is what has been happening. We had a marvelous Thanksgiving and Christmas AT HOME! Karly did keep getting sicker through Nov. and Dec. Karly was sleeping a lot with very little energy. Her lungs seem to just get bogged down with bacteria then she kinda shut down. She cannot be on IV meds all the time; it is not good for your body and her body likes to get resistant, so we need to save these drugs for critical times. Also, the molluscum was causing problems with living life comfortably, so it was decided that a surgical procedure was needed to burn it off. They set this up for Jan.13 and used a plasma laser. Let us say that it was more painful than anyone anticipated, and it is still healing today. As it turned out, her lungs were pretty sick going into this procedure, and required IV bacterial and fungal drugs until last week. The drugs were also needed to cover infection risks while she was healing from the surgery. She has been off the IV drugs since last Sunday, and she already is feeling more tired and goopy. Of course, the weather has been warm, and the allergens are high which is part of the problem. Another reason is that she finally has been able to start the Interferon Alpha which should help control the growth of the molluscum, but the side effects make you feel like you have the flu and tired. Last time she tried to start this med, she went neutropenic. We have been trying to find another time to start this...a time when she feels remotely well. Just this month, we finally found it. She started it last week. Tonight is the second dose. The type of warts and molluscum associated with this disease is problematic because of the known mutations into Squamous Cell Carcinoma and Cutaneous T-cell Lymphoma. Both of these have been deadly with other Dock8 patients. This is the big reason we have been trying to eliminate as much of it as we can. In Kelsey, she had 2 areas on her body with pre-squamous cell activity. We are being optimistic, until we have reason not to be. Please pray that she will be able to take this medication continually with great response. She continues to travel to NIH every three weeks.
We were blessed on the 1-yr. anniversary of Kelsey's Dancing With The Lord! It seemed like any other day(there isn't a day that goes by where we stop thinking about her), dealing with Karly's situation, school, work, etc, but we Skyped the boys who are away at college for a couple hours just sharing life, stories, and memories. We loved the encouraging words on Facebook, flowers, and notes. One of my favorite said, "I never knew Kelsey in life, but she changed my life forever." These kinds of stories just make us feel so blessed.
While Karly was inpatient at NIH for 13 days in January, she had one of Kelsey's night nurses during her transplant. The story she told us keeps us laughing. She said she remembered one night when Kelsey asked her to get a pair of underpants from her drawer. She just grabbed a pair and handed them to her. Kelsey replied, "These are not appropriate for the situation." The nurse had handed her a lacy pair, and she thought, "Then why did you being them to the hospital?" I love the timeliness of the stories. This was important for Karly during one of the most painful times of her life. Laughter was very important. And by the way, Sara one very awesome friend, came and stayed with Karly during her nights and provided great distractions and care.
There are more stories to share. When the Lord brings them to mind, I will share them. I trust that the timeliness will be important for someone.
Karly still does not have a match, nor can I say this is what we want. What we want is for the Lord to guide us through this journey while waiting for a complete healing "on earth as it is in Heaven." If a transplant is what He wants, then He will provide what is needed. Meanwhile, we(the whole family) will Dance Through The Rain.
Love,
Mom
We were blessed on the 1-yr. anniversary of Kelsey's Dancing With The Lord! It seemed like any other day(there isn't a day that goes by where we stop thinking about her), dealing with Karly's situation, school, work, etc, but we Skyped the boys who are away at college for a couple hours just sharing life, stories, and memories. We loved the encouraging words on Facebook, flowers, and notes. One of my favorite said, "I never knew Kelsey in life, but she changed my life forever." These kinds of stories just make us feel so blessed.
While Karly was inpatient at NIH for 13 days in January, she had one of Kelsey's night nurses during her transplant. The story she told us keeps us laughing. She said she remembered one night when Kelsey asked her to get a pair of underpants from her drawer. She just grabbed a pair and handed them to her. Kelsey replied, "These are not appropriate for the situation." The nurse had handed her a lacy pair, and she thought, "Then why did you being them to the hospital?" I love the timeliness of the stories. This was important for Karly during one of the most painful times of her life. Laughter was very important. And by the way, Sara one very awesome friend, came and stayed with Karly during her nights and provided great distractions and care.
There are more stories to share. When the Lord brings them to mind, I will share them. I trust that the timeliness will be important for someone.
Karly still does not have a match, nor can I say this is what we want. What we want is for the Lord to guide us through this journey while waiting for a complete healing "on earth as it is in Heaven." If a transplant is what He wants, then He will provide what is needed. Meanwhile, we(the whole family) will Dance Through The Rain.
Love,
Mom
Saturday, November 12, 2011
Day 284-DANCING WITH THE LORD
It's been 6 weeks since I last posted. Karly's life has been a roller coaster, so I've not known what to post about her health. Sometimes the reality of this disease just escapes me..., we believe that God will heal her so we are waiting on HIM and HIS perfect timing. It is still just moment by moment. She was on the IV drug for a month. Her snot and cough were at last improved, but just before they took her off the drug, the cough came back. The last 3 weeks she's been off the 2 IV drugs and for the last 3 weeks she has been worsening. Her band-like headache has gotten worse. She got an additional headache in the occipital region on the right side back of her head that is quite painful. Between these two headaches, her days and sleeping have not gone very well. The face swelling and right blood shot eye is back. Her IgE and Eosinophils are extremely elevated. She fell down the stairs last Saturday, then again on Tuesday. The second fall really shook her up. She has never fallen down the stairs. The first fall we didn't think much of it. The second fall was alarming. She immediately thought the worst and was so worried. Really, everything pertaining to her health has been worse. After talking with NIH, they felt that we shouldn't wait until the 17th to come, so we made phone calls to fill in the gaps to our schedule(a big thanks to everyone who is helping out) and hopped on a plane to Maryland. She had her Ommaya tapped on Thursday morning, a brain MRI, and a neurological exam. Cultures of her eye and sputum were taken. So far, the results are negative. We are in a waiting mode for the flow cytometry and viral results. We are not yielding answers to making her feel better....but we are not done yet. We see pain management and have an endoscopy on Monday. Dermatology and ENT are Tuesday. Please continue asking the Holy Spirit for healing, peace, and wisdom.
On a neat note, Karly was asked in August to make a piece of art 20"x 20" as a donation to Booz Allen, a leading provider of management and technology consulting services to the US government in defense, intelligence, and civil markets as a thank you for their support of the Children's Inn. She made a small canvas 11" x 11"depicting Indiana. Her large piece was based on an original poem she wrote just for Booz Allen.
"Can I be like a tree? bringing shade to everyone.
Can I be like a bird? and bring song here upon.
Can I be a button? and keep things together.
Can I be a caterpillar? and change during the weather.
It doesn't matter what I am, Because I am made by God.
But I think I'll be myself, Because anything else would be quite odd."
It is really cool. The timing of it all was perfect. When she was inpatient in September, she was able to see the art therapist in her room. Through their brain-storming efforts, Karly was able to make her vision a reality. We would have loved to keep it ourselves, so I don't know how artists let their pieces go. She will just have to make another. The piece was photographed and a print is being made.
NIH had a special service where they memorialize the patients they lost this year. We sent 5 pictures of Kelsey. Going through all her photos is hard. I look at all those times in her life when she was happy and experiencing relationship and yearn that we had more. Then, in the end, I know that we all will face eternity, and she is laughing and dancing in Heaven. She fulfilled what God had planned for her. She made a difference and is still making a difference. I am thankful for the truth that we will see her again.
"He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end." Ecclesiastes 3:11
"In bringing many sons to glory, it was fitting that God, for whom and through whom everything exists, should make the author of their salvation perfect through suffering." Hebrews 2:10
Love,
Mom
Friday, September 30, 2011
Day 241- DANCING WITH THE LORD
Time is flying by. Time is so precious. Where does it go? Why does it go by so quickly? What ultimately is our goal for the time we have on earth? I think we know what our purpose is, but what about "the time"? I was challenged a few weeks ago about how we look at healing. One of the thoughts that stayed with me was how easily we will spend 3-4 hours watching a football game, but how hard it is for us to spend 3-4 hours praying for healing. I have begun "My Healing Devotional" by Dr. Terry Teykl with great expectations on how to use my time in prayer more wisely.
"My Healing Devotional: 40 Days to Pray for Wholeness" by Terry Teykl
"My Healing Devotional: 40 Days to Pray for Wholeness" by Terry Teykl
It has always been my conviction that we could do a better job praying for the sick. That's why I'm so excited about our new resource, My Healing Devotional. It is a meaningful gift for someone battling illness, and is a great tool for personal prayer ministry. It could even be used to help teach people how to more effectively pray for the sick.
In Luke 5, some men lowered their friend down through the roof of a house where Jesus was teaching. They knew that one touch from Jesus would make him well, so they were willing to take the risk and "hold the rope."
Will you be Karly's rope holder? To learn more about this way of praying, ask the Holy Spirit what that means for you.
Update on her health: We have been struggling through the last months with little success of getting her to feel better. The last three weeks have been hard, both physically and mentally. For me, watching her get sicker just brings back Kelsey's struggles in her life of sickness, trying to be normal by doing school and working and having a social life. The drug to make her better, made her sick....she went neutropenic and anemic. She had very little energy, trouble breathing, and her headaches got worse. The drug to keep the skin viruses under control probably contributed to this demise, so she cannot use it for now. Her counts have recovered, and hopefully the anemia also. She was given an IV dose of Iron on Tuesday. She left the doctors all her sputum, sinus gunk, blood, urine, and cultures. The phone call came yesterday that she is growing a lot of nasty gram negative pneumonia bacteria pretty much everywhere. This is good news in a sense because now we know what drug works on this and can hit it hard. It is administered through her line 3X/day, but won't be as bad as the last one. The major prayer request now is that she won't react to it and can complete this therapy and that she will feel healthy...no more headaches, breathing trouble, gunky lungs and sinuses, and all bacteria will be eradicated. Okay, here we go! If she can finally feel better, there is hope that she may get to use the drug to combat the viruses. We will not get ahead of ourselves, but live one day at a time.
It was "interesting" that on the day we flew back to NIH where Kelsey's death is so real, I read in my devotional these words: "Giant steps are another matter altogether: leaping across chasms of semidarkness, scaling cliffs of uncertainty, trudging through the valley of the shadow of death. These feats require sheer concentration, as well as utter commitment to Me." This says what I deal with on a constant basis. I have to continually ask God to intervene in my thoughts and dreams, to give me hope when frustration is taking hold, to find laughter when things are heavy. The very weekend when we were battling heavy sickness with Karly, we had the joy of the boys coming home and her 80's party with friends. God is good all the time. This puts you up to speed on the happenings around home. Thank you for those who will become "rope holders". I like that term.
Love,
Mom
Wednesday, September 7, 2011
Day 218-DANCING WITH THE LORD
I was typing in the number of days today and was really amazed and mortified at the number of days Kelsey has been gone from us. Thankfully, it doesn't seem like that long. We reminisce so often and reflect everyday about her...maybe that is what makes her feel close to us. I still can see her at home in her room, the family room, and especially the kitchen. She loved eating and watching movies. Our trip to Alaska was our first family vacation without her, but she would have loved that trip when she was well. She was so adventurous. She would have climbed the mountains and glaciers and loved the food. Then there was the all too funny videos the boys put together. Her outrageous laugh would have permeated the camera. That is the way we want to remember her. I still have so many visual mind pictures of her sick in the hospital. Those pictures make me feel so helpless and sad, but I wouldn't have ever given up that time with her. I think what makes it harder for me than everyone else is all those painful memories of watching her suffer. The Lord knows what we all need, so trust is where it is at.
Karly started feeling a little better by Sunday, so she was able to finish an English Comp paper and the last of her Chemistry problems. Sara came Sunday last afternoon with games. Debbie and Deana came later in the evening. Deb and I left Sara and the girls to play games and get crazy which is what usually happens when Deana and Karly are together. We came back bearing ribs and chip. The next day went well also. Karly's nurse was able to get the all the meds finished by noon, so she could go out on pass. That was when we saw the movie "The Help", a fantastic movie. We squeezed dinner in also, then got back to the hospital to hook her up to Huebert. She has been so busy with Skyping her classes and doing homework, keeping her appointments and talking with the doctors and nurses. She is also working on some artwork to be displayed in the Booz Allen offices. Booz Allen is a big contributor to the Children's Inn. The artwork is a way to say thank you. Home health is being set up at this end to be ready to start at home Saturday evening when we fly home.
Alaska was very amazing. The beauty of the mountains, the animals in the wild, the blueness of the glacier water, the expanse of the wilderness were to be awed. We were blessed with friends who shared this time with us. All our experiences were amplified by the hospitality we found from Carmel's relatives and friends. Tyler and Trent made us laugh from there exploits with their pictures and videos. Highlights included our hike to the top of Reindeer Mountain, charter fishing for halibut, Kenai National Fjords seeing whales, otters, sea lions, bald eagles, a bear, and many large glaciers, the pipeline, riverboat tour, the shuttle back to Wonder Lake(11 hrs) in Denali National Park, fish hatchery in Valdez, watching bear feed on caribou and fish, hiking on Worthington Glacier, and eating the halibut the boys caught. Two weeks went very quickly, then back to the real world. Alaska is in the United States????Those who have been there know what I mean.
Tonight, Sara is returning with a home-cooked meal. We are so blessed! It really breaks up Karly's mundane meal order which is the same everyday, twice a day because of her allergies. I'm sure I will be cooking some specific requests when I get home. All those cravings multiply when you can't have them. Thanks for praying. I finally felt like I slept last night. With our crazy school schedule this year, it looks like I better get used to less sleeping hours. Prayer request: Karly has been getting many driving hours, but she is not very confident yet. Pray for confidence and opportunities that show her that she is ready to take the driving test. Also, that the meds will completely wipe out the bacteria and fungus, her energy will return, her head will be clearer, and the headaches will be gone. Pray that the new weekly injection will not make her sick or depressed and that it works against her progressive symptoms all in the name of Jesus!
Thanks for praying! Thanks for taking care of us!
Love,
Mom
Karly started feeling a little better by Sunday, so she was able to finish an English Comp paper and the last of her Chemistry problems. Sara came Sunday last afternoon with games. Debbie and Deana came later in the evening. Deb and I left Sara and the girls to play games and get crazy which is what usually happens when Deana and Karly are together. We came back bearing ribs and chip. The next day went well also. Karly's nurse was able to get the all the meds finished by noon, so she could go out on pass. That was when we saw the movie "The Help", a fantastic movie. We squeezed dinner in also, then got back to the hospital to hook her up to Huebert. She has been so busy with Skyping her classes and doing homework, keeping her appointments and talking with the doctors and nurses. She is also working on some artwork to be displayed in the Booz Allen offices. Booz Allen is a big contributor to the Children's Inn. The artwork is a way to say thank you. Home health is being set up at this end to be ready to start at home Saturday evening when we fly home.
Alaska was very amazing. The beauty of the mountains, the animals in the wild, the blueness of the glacier water, the expanse of the wilderness were to be awed. We were blessed with friends who shared this time with us. All our experiences were amplified by the hospitality we found from Carmel's relatives and friends. Tyler and Trent made us laugh from there exploits with their pictures and videos. Highlights included our hike to the top of Reindeer Mountain, charter fishing for halibut, Kenai National Fjords seeing whales, otters, sea lions, bald eagles, a bear, and many large glaciers, the pipeline, riverboat tour, the shuttle back to Wonder Lake(11 hrs) in Denali National Park, fish hatchery in Valdez, watching bear feed on caribou and fish, hiking on Worthington Glacier, and eating the halibut the boys caught. Two weeks went very quickly, then back to the real world. Alaska is in the United States????Those who have been there know what I mean.
Tonight, Sara is returning with a home-cooked meal. We are so blessed! It really breaks up Karly's mundane meal order which is the same everyday, twice a day because of her allergies. I'm sure I will be cooking some specific requests when I get home. All those cravings multiply when you can't have them. Thanks for praying. I finally felt like I slept last night. With our crazy school schedule this year, it looks like I better get used to less sleeping hours. Prayer request: Karly has been getting many driving hours, but she is not very confident yet. Pray for confidence and opportunities that show her that she is ready to take the driving test. Also, that the meds will completely wipe out the bacteria and fungus, her energy will return, her head will be clearer, and the headaches will be gone. Pray that the new weekly injection will not make her sick or depressed and that it works against her progressive symptoms all in the name of Jesus!
Thanks for praying! Thanks for taking care of us!
Love,
Mom
Saturday, September 3, 2011
Day 214-DANCING WITH THE LORD
Good story a couple of weeks ago. I drove over to Crawfordsville to settle the boys in on campus. I thought that Trent would want some help just organizing his piles of stuff, after all Tyler did. No, Trent wanted to do it all. Okay, no problem. But Tyler, on the other hand, still likes mom to settle him in. I love it. It seems to get easier every year. This should be his last year on campus as a college boy. I just feel good about leaving him "settled". This is how I want to feel when I leave Karly in the hospital at night "settled". Anyway, I haven't got to the good part yet. I was praying for Trent on my way home..maybe partly because I didn't get to settle him in, or just because school has been hard for him with all our family issues taking away his focus. I was zoned "in my prayers", but when I finished and "zoned back on the highway", there was a beautiful rainbow. I asked God if this was an answer to my prayers that Trent would be okay. I knew my answer, and I was at peace. Isn't that awesome?!
I want to share a story Karly wrote when she was released from the hospital after cancer, but before we came home in April 2010. She has re-written it again this year with more clarity and dedicated to Kelsey "Enigma" Jo Koch. I want everyone to know how important the body of Christ is just in case you haven't gotten it yet. You are all important to our survival.
THE “ENIGMA” SURVIVES
The alarm was set the night before. The next morning it began to play music. As I peeked open my eyes, I sat up and stared at the wall. Glancing around, there were two alarm clocks, two closets, and two of everything. While my eyes were struggling to focus, I began to slowly crawl out of bed. Looking down at my four feet, I baby stepped to my door. My head was pounding. I heard mom in the kitchen, and I continued to make my way to her. Finally, making it to the kitchen I explained to mom everything I was seeing was double and my head was in excruciating pain. She could see that my eye was looking lazy and not following the correct sight of path. She immediately called my doctor at the National Institutes of Health in Maryland. The next thing I knew mom and I were on a plane in route to the hospital.
My highly concerned doctors raised a bundle of questions. I was just confused. The next days consisted of scans, blood tests, lumbar punctures, MRI’s and a cocktail of other questions and perplexed faces. As more symptoms presented, I became more puzzling. While the doctors continued the tests and waited for results, my mother frenzied onto the internet for her own studies on my current symptoms. She and the doctor were emailing each other articles in the wee hours of the morning. My doctor told me that she needed more symptoms in a joking kind of way. Then without warning I awoke with no feeling on the right side of my chin. With this new symptom, it pointed mom in the right direction and with just enough evidence she asked the doctor to pursue this. My doctor asked some colleagues in the Cancer Institute to check me out. They were leery. I wasn’t presenting the way I should. By the time we did another lumbar puncture and received positive results, the blood work was finally showing cancer numbers. It only took two long weeks of looking, but with a diagnosis the treatment could start.
I can remember my immunodeficiency doctors who took care of my day-to-day health and then the new faces of the oncologists that came into my room to talk to mom and me about my diagnosis, Stage 4 Lymphoma. I didn’t know what Lymphoma meant, but their expressions were poignant. After they left, mom looked at me, and I asked her what Lymphoma was. With tears forming in her eyes she told me, “It’s cancer, honey”. When I heard those words I broke into tears, and mom hugged me. We both cried, and I felt so scared.
The next five months I endured chemotherapy along with other treatments. I vividly remember feeling miserable. The nurses would enter every morning with big smiles on their faces, and I had no thankful grace to offer them. I was so glad to see mom every morning, and she stayed until I went to bed. She kept a positive attitude, and it gave my depleted spirit refreshing hope. The gifts and letters I received were amazing. Cards filled my window space, posters filled my wall, and stuffed animals filled my bed and night stand. Gifts were abundant. Everything spoke of faith and hope, and that always put a smile on my face.
Being 10 hours from home, I didn’t think anyone would come to visit. To my surprise, I had the best encouragement. Three friends came and loved on me. They kept life exciting with stories and games. My family came to visit. Being with them was therapeutic. I was sad when they left, but the visitors didn’t stop there. My aunt and cousins would bring food saving me from hospital food for a couple of days. My boyfriend came for the Thanksgiving and Christmas holidays. We had fun recreating the random things we would normally do at home. As we talked, he was able to understand some of my frustrations. He helped me keep my sanity. The games, jokes, and stories that we were able to share really helped lessen the sensation of being cooped up, and I felt more normal and happy. Another saving grace was a visit from my youth leader. Although I was easily exhausted, she eased my struggle. She talked with me about my fears, and I told her how I felt. Having someone you can trust who will listen and talk to about how you truly feel lightens the weight of your heart. Not realizing it, I had locked up some deep feelings. Talking to her released some feelings of anger, fear, and I was able to be vulnerable. After every conversation my spirit felt freer. One more visitor really made me see the joy in life. She was one of my mom’s friends who drove the many hours out to Maryland to see us. Exuberance burst from her. Her personality not only perked me up but allowed my mom to laugh, smile, and joke around. During Christmas, she decorated the bland, white hospital room with every festive thing you could think of. I’m so thankful for each visitor. Each one of them brought me a little bit of home. Without a doubt, these friends helped me through one of the hardest things I’ve ever had to endure.
After arriving home, my new outlook on life found myself promising I’d never take life for granted. The whole experience brought my family closer, especially mom and I. Looking back at that traumatic event; it was the best thing that has ever happened to our family. We have more fun and laughter now. Every time my alarm sings, I’m unaware of what the day will bring, but I know with my family and faith that I am equipped with everything I need. My trust and God and the prayers I received ultimately brought me hope. Without hope, things would have been exceedingly more difficult. I’m so thankful for my life.
Thursday, August 25, 2011
Day 205- DANCING WITH THE LORD
Wow, I sure did let a lot of days pass since my last post. So, what has been happening? Karly and I flew to Maryland on July 14 to attend Reid's Memorial Service just prior to her hospital treatments. Tracy and the girls drove out. The service was honoring to him and his family. Of course it was emotional, but so good to see many family members. We were cared for by Debbie and Ridge's friends for meals, and special events...bonfire, horse riding, and swimming. Konner and Kassidy were able to spend some extra days with their cousins before they attended their second Sibling Day at NIH. They experienced a full day of activities planned just for the siblings of the patients at NIH. They were interviewed as well by CBS news in Bethesda and quoted in a Gazette and Newsletter.
Here are the various Sib Day stories beginning with Channel 9News Now last Friday:
http://www.wusa9.com/news/local/story.aspx?storyid=162638
NIH Clinical Center:
http://www.cc.nih.gov/about/news/newsletter.html
Gazette story:
http://www.gazette.net/article/20110727/NEWS/707279562/1036/siblings-get-window-into-world-of-nih-medical-procedures&template=gazette
Karly's appointments went as usual. She continues her treatments. She still hasn't felt well since February. We have looked into several scenarios and tried various drugs related to those scenarios. No improvements noted. Upon leaving last time, we started a different antibiotic. It seemed to do something to her abdomen and stomach unlike anything she had ever felt. She had difficulty explaining the feeling. Never-the-less, her appetite decreased largely, and she just didn't feel like eating. After 2 weeks of this medicine, the pain became extreme in her abdomen. She discontinued this medicine. After 2 weeks off her stomach, abdomen and appetite are better. The good news in all of this is that finally after almost 6 months of feeling really crappy, the headaches left for 3 days, she had energy, and she felt clearer than she could remember. So the story continues: after being off the drug for two weeks, all the symptoms returned. Upon our last visit to NIH over August 14-16, it was determined to admit her Sept.1-10, put a PICC line in, give her some heavy duty antibiotics and a fungal for her resistant fungal infection and blast those bugs. I will have to back track on my next post to include the vacation to Alaska which occurred between those two visits. For now, life is staying busy. Being gone for at least 8 days out of 21, then having the weekend take up another 5 days, that leaves 8 weekdays to get everything done I would normally do in 21 days. Of those 8 days, the evenings are volleyball and dance and meetings. The days are schoolwork, appointments, paperwork, and preparing for all said activities...you know... the parent roles. blah blah blah...not complaining really. I was just trying to figure out where all my time goes. The good news about that is "God is in control of all of it". It just ebbs and flows according to Him. I have to remember to not get ahead of myself. I actually was blessed to have about 5 hours catching up with a close friend in Indy yesterday. What a joy it was! Things in the Koch Household are well with each other and well with the Lord.
Love,
Mom
Here are the various Sib Day stories beginning with Channel 9News Now last Friday:
http://www.wusa9.com/news/
NIH Clinical Center:
http://www.cc.nih.gov/about/
Gazette story:
http://www.gazette.net/
Karly's appointments went as usual. She continues her treatments. She still hasn't felt well since February. We have looked into several scenarios and tried various drugs related to those scenarios. No improvements noted. Upon leaving last time, we started a different antibiotic. It seemed to do something to her abdomen and stomach unlike anything she had ever felt. She had difficulty explaining the feeling. Never-the-less, her appetite decreased largely, and she just didn't feel like eating. After 2 weeks of this medicine, the pain became extreme in her abdomen. She discontinued this medicine. After 2 weeks off her stomach, abdomen and appetite are better. The good news in all of this is that finally after almost 6 months of feeling really crappy, the headaches left for 3 days, she had energy, and she felt clearer than she could remember. So the story continues: after being off the drug for two weeks, all the symptoms returned. Upon our last visit to NIH over August 14-16, it was determined to admit her Sept.1-10, put a PICC line in, give her some heavy duty antibiotics and a fungal for her resistant fungal infection and blast those bugs. I will have to back track on my next post to include the vacation to Alaska which occurred between those two visits. For now, life is staying busy. Being gone for at least 8 days out of 21, then having the weekend take up another 5 days, that leaves 8 weekdays to get everything done I would normally do in 21 days. Of those 8 days, the evenings are volleyball and dance and meetings. The days are schoolwork, appointments, paperwork, and preparing for all said activities...you know... the parent roles. blah blah blah...not complaining really. I was just trying to figure out where all my time goes. The good news about that is "God is in control of all of it". It just ebbs and flows according to Him. I have to remember to not get ahead of myself. I actually was blessed to have about 5 hours catching up with a close friend in Indy yesterday. What a joy it was! Things in the Koch Household are well with each other and well with the Lord.
Love,
Mom
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