We've had a great summer, but different. Tyler started working as an "all grown up child" in May. He lives in Illinois, but thankfully he isn't more than a 4 hr. drive away. He is "living the dream" and doing it wonderfully.  Trent started working at a job he is so suited for....fixing and troubleshooting anything in a Die Cast business. He working at least 50 hours/wk. We missed vacationing with our boys this summer which was a big change for us. We praise God for His faithfulness in so many ways. Tracy and I celebrated 30 years of marriage with a cruise in July to Key West, Cayman Islands, & Cozumel. We had an awesome time! Then we took the girls to Niagara Falls, Boston, MA, and Portland, Maine. One exciting thing for Karly was eating seafood. Maybe someone can figure out why she can eat fresh seafood, but not frozen seafood. One explanation we got was that the older the seafood is the more enzymes there are in it. Anyway, since this was how it was for Kelsey, we thought maybe Karly would be the same way. She hasn't been able to eat seafood since cancer. She went armed with her Epi-pen and Benadryl to the restaurant. They willingly brought her one shrimp to try. She named it Mumford the first. She successfully ate Mumford, then went on to eat a plate full of shrimp. Since that went well, she tried tilapia, haddock, lobster, and crab. All went successfully. Since about the only meat she can eat is chicken and pork, this was a fantastic experience for her. We enjoyed walking the Freedom Trail in Boston, seeing the Minutemen National Park, and walking by the water. In Portland, we were on the waterfront, so we enjoyed walking the quaint shops, eating Gelato, finding the lighthouses, and hanging at the beach. Karly was able to get some sand art in at Crescent Beach....any guesses to what she made....yes, the Titanic. Summers go by so quickly...next week she starts 2 classes at the Community College, and Tracy starts teaching school again.

Medically, she still is going to NIH every 3 weeks to receive her IVIG and exams from the Dr., & the derm and ENT clinics. It is pretty routine by now. Her Hypertonic nebulizers are probably doing the trick for her lungs, but we won't know until after her October scans. Her eyesight has worsened some and the molluscum is causing some infection because it has blocked her tear ducts in both eyes. It is also causing her eyelids to be bulky and swollen. We saw an Oculoplastic surgeon this week in Indiana. He will be trying to put in stints to open her tear ducts or creating a new tear ducts. He will also de-bulk her eyelids. She will be seeing a facial plastic surgeon in Sept. to see if he can successfully remove it around her mouth and chin areas. If so, they will be sharing the OR to get this done in October. She is scared, but oh, so ready to have some relief. Her chest, abdomen, and pelvic CT's will be done in October. This is her cancer check-up and GI scan to see if the steroid treatment has worked with the thickening they found in April. Praying that these will prove to be negative in every way.

As she approaches the school year, the travel to NIH, the surgery, and her every day dealings with this disease, she needs prayer to sustain her emotionally, physically, and spiritually. We thank you for carrying this burden with us.

Love,
Mom

Still Dancing Through The Rain

Another three months have passed. Karly had the biopsies in May. The stomach one didn't show cancer, but very bad eosinophilic disease. The GI doctor wasn't exactly convinced that this was all that was happening, but because the cells weren't showing cancerous, he decided to treat with a steroid for 6 weeks, then get another CT to check. If the CT showed worsening, another deeper biopsy would be performed. The CT on July 2 didn't show worsening, but didn't get better either. At this point, she will continue to stay on the steroid for another undetermined amount of time, then get another CT. Her symptoms of pain in the abdominal/stomach region did get a bit better. Her band-like headaches have gotten worse again and the sharp occipital headache has returned. She was treated for the latter at the last appointment. Her molluscum is raging out of control on her body especially her face. The Interferon she was taking for this was causing havoc with her blood counts, her emotions, and making her extremely tired. As of mid-June, she was not able to increase the dose of interferon to a therapeutic level after being on it for several months, so this treatment was stopped. The CT in July also showed something in her lung that could be pneumonia or mucous(fluid) hanging out. She has been trying to cough this out by using a hypertonic nebulizer. She is coughing stuff out, but cannot say it has helped her. She may continue on this for awhile. She has gone to NIH twice by herself. Once you reach 18, they no longer bring a guardian out. Now if there is something traumatic going to happen or she needs me, they will. The first trip by herself was mid-June. She did exceptionally well. She left today for the second trip by herself. The flight has been delayed twice already making this a late night for her. Pray things will work out for her and her connections with the cab driver and finding food once she arrives is not complicated. Each visit for her holds news that is not great, but to be able to leave a visit with not having a biopsy or anything that causes too much pain, she can smile about! She continues to travel to NIH every three weeks.

Karly has had many activities to keep her busy, but not all of them have held the joy she hoped they would....mostly because the interferon was interfering with her energy and emotions. She got through her senior trip to Chicago, Prom, and Senior Banquet. She has graduated from High School and registered for 2 classes in the Fall to slowly work toward her Health Support Degree and applying to Physical Therapy Assisting School. She got through SERVE week where you stay at the church, work long, hard days, in the extreme heat to serve the community we live in. She specifically worked on a wheelchair ramp for an elderly widow. It was very rewarding. She had her dance recital where she danced a senior solo, and 2 other ballet dances. She was able to spend a few days with her boyfriend and his family at a lake. Karly wants to see Boston, Massachusetts, Maine, and Niagara Falls, so guess where we are going when she returns from NIH. Life really has been good! We praise Jesus EVERYDAY! I may have said this before, but just to be able to spend time everyday with each other, friends, worship our Lord and Savior, and look for opportunities to bless others really is a joy.

I will try to do a better job of communicating. While in the midst of living at NIH and the daily turmoil, roller coaster events, and lots of time on my hands, I was able to write more frequently. While at home, I try not to focus on the disease. Not that I'm ignoring it, but just NOT focusing on it. God has way more in store for us than this disease, so we have to keep our eyes on HIM! Thanks for praying and encouraging us.
Love,
Mom

Stilll Dancing Through The Rain

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

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

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

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

It has always been my conviction that we could do a better job praying for the sick. That's why I'm so excited about our new resource, My Healing Devotional. It is a meaningful gift for someone battling illness, and is a great tool for personal prayer ministry. It could even be used to help teach people how to more effectively pray for the sick.

In Luke 5, some men lowered their friend down through the roof of a house where Jesus was teaching. They knew that one touch from Jesus would make him well, so they were willing to take the risk and "hold the rope."

Will you be Karly's rope holder? To learn more about this way of praying, ask the Holy Spirit what that means for you.

Update on her health: We have been struggling through the last months with little success of getting her to feel better. The last three weeks have been hard, both physically and mentally. For me, watching her get sicker just brings back Kelsey's struggles in her life of sickness, trying to be normal by doing school and working and having a social life. The drug to make her better, made her sick....she went neutropenic and anemic. She had very little energy, trouble breathing, and her headaches got worse. The drug to keep the skin viruses under control probably contributed to this demise, so she cannot use it for now. Her counts have recovered, and hopefully the anemia also. She was given an IV dose of Iron on Tuesday. She left the doctors all her sputum, sinus gunk, blood, urine, and cultures. The phone call came yesterday that she is growing a lot of nasty gram negative pneumonia bacteria pretty much everywhere. This is good news in a sense because now we know what drug works on this and can hit it hard. It is administered through her line 3X/day, but won't be as bad as the last one. The major prayer request now is that she won't react to it and can complete this therapy and that she will feel healthy...no more headaches, breathing trouble, gunky lungs and sinuses, and all bacteria will be eradicated. Okay, here we go! If she can finally feel better, there is hope that she may get to use the drug to combat the viruses. We will not get ahead of ourselves, but live one day at a time.

It was "interesting" that on the day we flew back to NIH where Kelsey's death is so real, I read in my devotional these words: "Giant steps are another matter altogether: leaping across chasms of semidarkness, scaling cliffs of uncertainty, trudging through the valley of the shadow of death. These feats require sheer concentration, as well as utter commitment to Me." This says what I deal with on a constant basis. I have to continually ask God to intervene in my thoughts and dreams, to give me hope when frustration is taking hold, to find laughter when things are heavy. The very weekend when we were battling heavy sickness with Karly, we had the joy of the boys coming home and her 80's party with friends. God is good all the time. This puts you up to speed on the happenings around home. Thank you for those who will become "rope holders". I like that term.

Love,

Mom

Day 218-DANCING WITH THE LORD

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