July 2019

"Today marks 5 years since my bone marrow transplant, and I can hardly believe the many changes that have happened since then. I finished my degree, passed the physical therapy board exam, moved to a new city to live on my own, got my first full time job in a rehab hospital which was my dream since I was 15 y.o., and I have made so many new friends. I am living a life I hardly deserve. Blessed beyond measure, but that is what my God does. He wants all of His children to live their best lives full of love, joy, peace, friends, family, and united with Him. I believe I am only alive today because this great God has plans for me that will build his kingdom, and I am determined to try my best to share his Good News! The trials I have faced I will share with others, and point out where God was the one carrying me. Praise the Lord for his infinite mercies, ever present love, and grace that has been poured out as many as the rain drops! His goodness knows no bounds, and He cares for His children as if they were a fragile, new born chick. Tell someone about how God has changed your life today!" Karly

January 2019

Hi to all who find this page again. I think an update is needed to hear the further miracles God has given Karly and life updates. I will start posts that she has shared from 2019: marked as Kelsey's 8 yr homegoing and Karly's 5 yr transplant birthday. 

"This has ALWAYS been true, but I usually figure this out as I reflect on the steps I've taken. For me 2018 represented transition, which leads this year into new beginnings. Finishing school, passing my board exam, finding a job, and then moving to a new city. I am settling into a new chapter of life that feels like it took forever to get to, but that is when I am reminded that life happens in the journey. Your lessons are learned on the way, and you can't just skip ahead. God has the plan step by step, and there is purpose to everything He does. Last year I challenged myself to live in the moments, which I was successful and non-successful at throughout the year. This year presents in the challenge of living on my own and figuring out the new aspects of life I have not navigated yet. But I am up to the challenge, I am ready to learn and fail, and get back up again! In the preparation of the journey, I am ready to go. With family and friends on my side, show me where to go, Lord!" Karly

9 years ago Kelsey's Homegoing

I made this post the day she died..Feb.2, 2011: Continual dialysis, ventilator, & more drugs than they can keep up with, another line placed in neck. Told night nurse to watch out for miracle. Hoping. Praying. Tracy's here. Angie helping by day. Kelly holding night vigil. Walk by faith, not sight! -Mom

Karly's thoughts 2020:Reading this still pumps the blood through my veins faster. I remember this day, not perfectly, but the emotions are fresh. I have those momentary flashes of memory from her last day, and as much as they are not pleasant, I must feel them as I remember her. My beautiful sister. So smart, caring, kind. Never knew a stranger. Willing to lead the way. As life goes on, I give credit to you. You made such a daring sacrifice that I get to see the fruit of. It's beautiful, sis. The DOCK8 lives that are saved now because of you, including mine. Gosh, I miss you, but I wouldn't be here if you were. Someone had to do it, and you said it had to be you. So many times, I want to share my life experiences with you, but I can't. I still don't always understand why, but I know I will always be thankful for you. I praise God that you are dancing with Him in Heaven. Surely enough, we will see you again. A hope that I strongly cling to. I try to live better with this chance at a second life, because of you, and you still inspire me to push myself harder. I can only praise God for His marvelous plans, and live to tell His story. This life I live is not my own, and I must use it the way you did. As a living sacrifice to others. Thank you, Kelsey E. J. Koch for the life you lived so well! ♥️

Kelsey's 6 year home-going anniversary

Six Years Home and Still His Miracles

I pray you have the endurance to stick with this story and see God's amazing love and grace to all of His creation. This story just might release you from the burden of who's in the White House or who is or isn't allowed in the country or any of the other current distractions. This is a story of God's love for all the world. And it starts with my Kelsey's journey through her life.

Some may say this is just an attempt at this old man's search for meaning in a meaningless situation. That coincidence is playing tricks on me. But I think not. Piecing this story together is going to take some time. There are some details that you need to know to truly understand my vision of what I believe God is up to. So I begin with some facts.

Fact one, I used to coach basketball at Monroe Central years ago. I got out of it because my family needed the time it was taking for their coaching needs. I really have not desired to be involved with MC basketball since I left. Up until last Tuesday night, I hadn’t been to a varsity game at our high school gym since then.

Fact two, one of the friends I sat with at the game Tuesday I literally see twice a year at the opening and closing faculty meeting we have each year for work. We used to have other interests years ago being that we were both home schooling parents and our children interacted in home schooling coops. In fact, this is where Kelsey and his son met and dated for a time.

Fact three, my friend from the game hadn't been to many games this year either, this possible was the third.

Fact four, Kelsey's home going was 6 years ago on the second of February.

So with these facts let me try to explain what I see as God marvelous grace and love for all people.

I have recently had this strange interest in the girls’ basketball team. Yes, there are many former students, and yes, they are achieving record breaking feats. But, there have been other MC sports with the same kinds of successes, and I wasn't drawn to them like I have been to this team. Something else seemed to be pulling at me to go see this team play. So I did. I went to their last two regular season games. And they are good and entertaining. After the last regular season game, I told my wife if they got out of their sectional, I may want to watch them at state. But, I really had no plan to go to any sectional games as they are in a tough sectional, and I didn't want to go and watch them possibly lose. My thought process was, “Let them prove themselves and then I'd spend the money.” But something told me I needed to see them in that Tuesday night sectional opener. So, I went last minute and didn't plan on sitting with anyone. I hadn't told anyone I was going until that evening.

Coincidence or divine appointment, you decide.

So I sat down and was watching warm-ups and my friend, the one I see twice a year, comes and sits next to me. He too doesn't know why he decided to come but he likes the team and all that stuff. We begin having pleasant conversation. During this conversation, we go back to a time when we were looking for a miracle for Kelsey and Karly and had a stem cell drive at my church. Neither he nor his son went to my church at the time and although his son had dated Kelsey, they were simply friends. But because of their friendship, he had participated in this stem cell drive. Fast-forward to the ball game. My friend tells me that his son had recently gotten a call from the stem cell registry and he was a match for someone in Australia. His son had begun the process of donating his stem cells for transplant to Australia.

Kelsey knew that the chances of finding a match for her were like winning the lotto. But one of the reasons was she wanted to run the drive was to help others. She was trying to do her part so that God could do His part, possibly for her, but certainly with the thought that somebody else may find their match as well. I knew Kelsey's heart in this. Her transplant was to go second (after Karly) but wanted to go first in hopes that, successful or not, they would know more about this untried procedure before Karly had to endure it. Since Karly had the cancer, she was scheduled to go first. Then that changed when Kelsey's health diminished in her last months before transplant. Her heart was for the research, the ground breaking leading to cure.

So here we are, over six year past her passing, and I am at a basketball game hearing about how Kelsey's effort has again been responsible for the possibility of another life changing miracle. I should mention that Kelsey's failed transplant led the transplant team away from that method to other methods that have had great success including Karly's victorious transplant.  But this is just another in a long lists of things God has shown me my daughter's life has had a major role in achieving.

So to recap, because of Tammy and my religious convictions and Kelsey's health issues, we choose to home school. Kelsey meets a young man and because of their friendship he joins Be The Match. Over six years later, someone around the world is found to be a perfect match to that young man and will be receiving the life giving stem cells he needs in a transplant. And I hear about this miracle “2 days” before the anniversary of my Kelsey's home going.

You can think what you want. I believe God knew this man in Australia would need this transplant from the beginning of time. He has orchestrated this whole process to get those cells for him. God cares for His people and has a plan for their lives. And he reminds me with this precise timing just so I can brag about his marvelous grace and love.

What a wonderful life my daughter got to live. Oh, it was tough as nails but in hindsight she was a blessing to so many. And now you know the rest of the story. Praise GOD! :)

One parting thought. God's love is personal! He love's that person in Australia with this miracle gift and he loves me with His words of confirmation, and he loved Kelsey with His special mission only she could have accomplished. And His love is personal for you too!

Dad

An unexpected gift...

Yesterday was Tracy's birthday. In my email inbox was an article that Karly's doctors wrote about her transplant as it was the first, quite the big deal, and even more so since it's success. The article is in press, so I cannot share it with you all yet, but is was such a huge blessing. Just 7 years earlier on that same date, yes, Tracy's birthday, the New England Journal of Medicine published the first DOCK8 article sharing the stories of 11 people, 4 of whom had already died, and 2 being Kelsey and Karly. It seems like we have come full circle....maybe. I have no idea what God has in store for Karly's life, but we are so grateful that she has one. She is SO grateful to be living life as a college student. It is so hard for her, but she's not letting that stop her. She is ministering to the college students and making a difference. Please pray for her cognitive processing to be healed as it really deters her learning, yet she is coping. Please pray for her in ministry. Please pray for her healing to be completed. Continue to pray for our dock8 families. The road is long, tough, and uncertain. The haplo-identical bone marrow transplants have been going very well lately. I think I mentioned earlier that Karly was the first, the second survived, the third died, the fourth survived, the 5th died, and since then they have all been successful. They are learning from each one of us. We are thankful for these strong families. Whenever you think of us, please pray for them.

As for me, I'm getting my legs under me again...hopefully a better me from learning so many lessons from my Lord and Savior. He is taking me in new directions, new ministries. I'm very excited! All I can say is live each day fully doing His will...not your own.

James 4:14-1514 Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.15 Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

Matthew 6:3434 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

As always I thank God for you, our prayer warriors, our family, our friends.

Love,

Mom

2 Years Old

We just spent Karly's 2nd birthday at the NIH in Bethesda, MD. She received Tyler's life-saving bone marrow 2 years ago on July 25, 2014. That time was full of the unknown, yet we were at peace following God's plan to proceed with this transplant. Little did we know all the benefits that would come of it. There have been many DOCK8 Haplo-transplants since then...mostly with a fantastic outcome. We remember those that didn't make it through their transplant. It saddens us. We start saying, "if only," but quickly dismiss it because it is and always has been in God's hands. His timing is perfect. We stand in awe of Karly's life since the transplant. What a transformation! We've said it before and say it again, "She went from dying to thriving!"

It was an extremely packed week full of appointments and meeting with old and new friends. We feel so blessed every time we meet a new dock8 family. It feels good to be able to share that bond with those that really "get it" and "live it." For Karly, it's a rare opportunity when she can talk with someone who can even remotely begin to understand what a life of terminal/chronic disease is. She would probably say that is her favorite thing about going back to NIH.We get questions like, "What is the worst thing about the haplo-bone marrow transplant," "When do you lose your hair," "When did you go outpatient," and "Where are the best places to go during your outpatient stay?" We pray for them to make it through the transplant and talk of hope.

Karly's tests are improving. Her kidney number, although still high, was the best it's been in 2 years. Her heart numbers are remaining steady. Her BP is great with medication. She dropped one medication for which we are thankful(we were hoping for more to be dropped). Her PFT tests showed numbers she hasn't seen since 2009. Her adrenal insufficiency has been a slow climb over the last two years, but we saw it increase  from 1-8.  The normal number is about 20, so she still has a long way to go (rats). She received 9 vaccines and did super well with all of them. She had her 4 wisdom teeth removed in the OR under general anesthesia for safety reasons. It went well.

                                                                                                                                                                                                                                                                                                                                                                                                               We had fun Wednesday night being escorted by 7 Montgomery County Policemen on motorcycles during rush hour to Toys R Us. It was so cool watching them do their job in front of us. Their was a lot of oohs and awes by the kids and parents. After the kids shopped, we were escorted to a pizza place, then back to the Inn.

The most exciting news is that Karly will be starting the Physical Therapy Assisting Program in August. It will be 2 years long, and she'll receive her Associate's Degree. She longed to do this since her cancer in 2009. When she didn't get into the program last summer, she had to be patient and wait till this year to try again. She re-took the one class she had a "B'" in and received an "A". God's timing is perfect, and her body is ready to withstand the rigors of the program. She is so grateful and beyond excited..which doesn't even begin to describe how she feels. We are so proud of all she has persevered through and the young woman she is. God is using her on the Ivy Tech campus, the Oneighty program, her Bible Studies, and I cannot wait to see what this next chapter brings.

I will end with Karly's life verse. It seems quite appropriate. Proverbs 3:5-6:
"Trust in the Lord with all your heart,
    and do not lean on your own understanding.
6 In all your ways acknowledge him,
    and he will make straight your paths."

2 months before the 2 yr anniversary of her experimental transplant

Hi All,
I have been remiss in keeping you all updated. Since February, Karly has been fighting some kind of infection in or around her eye. We first thought it was caused by her sinus', but after treatment of that, we saw no improvement. Then she tried an eye drop antibiotic...not much improvement. Then a different eye drop antibiotic...again no improvement. She was bleeding out the corners of her right eye, and it was worsening. Finally, we were allowed to see her eye surgeon who had placed her eye tubes prior to her transplant. He confirmed that she was infected in her lacrimal sac. He said that he needed to make a new tear duct that bypasses the old blocked one. He performed a Dacryocystorhinostomy this morning. It is the surgical procedure usually used to treat most cases of blocked tear ducts in adults and rarely in children.This technique creates a new route for tears to drain out through your nose normally again by developing a new connection between your lacrimal sac and your nose. He said she was abscessed and no amount of antibiotic would have worked, so we are grateful that she was diagnosed and now treated. We hope for a speedy, painless recovery. She can't do anything for 48 hours, then about a week of taking it easy. 

Her BP has been high since the beginning of May. Not sure why. We are in a wait and see mode...will it return to an acceptable number or stay high? If it stays high, then the most likely cause is that her renal arteries are blocked again...not what we want. A couple good things with the HBP is that the pressure pushes blood through her kidney better and makes her lasix work better. Bad things are: makes her heart work harder, makes it harder to control potassium intake and possible stenosis. 

Karly turned 22 on Monday. She reflected that she will be outliving Kelsey who died at the age of 22. It is both a sad memory and a happy one. She celebrated with her boyfriend, Zach and also her family. We are grateful for every birthday of everyone. We take nothing for granted. We hope you count the cost of life everyday. God has a plan for YOU. Don't waste it. Living life centered on God's purpose for us is amazing. Karly has had an amazingly, God-awed year. Ask her about it sometime when you have time to listen. God is good all the time!

Thank you for standing strong with us throughout the years. I hope to do a better job communicating, but thanks for your patience.
Love,

Mom

5 years ago...Kelsey's Homegoing

This is from Kelsey's Memorial page on Be The Match.

Kelsey lived life exuberantly until her death on February 2, 2011. She lived with an undiagnosed primary immunodeficiency disease until 2009 when it was finally diagnosed at the National Institutes of Health as Dock8 Immunodeficiency Syndrome. Having spent 10 years in a research protocol at the National Institutes of Allergy and Infectious Disease, she gave more blood, skin, and cells than anyone with this disease leading to its discovery. Kelsey and her sister Karly were among the first 11 diagnosed with DOCK8 as stated in the New England Medical Journal September 23, 2009.

Her goal was to fight this disease in a rip-roaring manner in hopes of finding a cure for her younger sister, Karly, who has the same disease, and others fighting the same battle. With the knowledge at hand, she moved forward with a Double Cord Blood Stem Cell Transplant Fall 2010. It was the first transplant of its kind for DOCK8 in the world. She developed many complications which ultimately lead to her death. She fought valiantly and gave her body to the Institute to further research in this area. We never found a match for Karly, so the NIH continued to work on Karly's behalf to find an alternative for her and the other DOCK8 patients with no match. Karly became the first Haplo-Bone Marrow Transplant for DOCK8 on this side of the world on July 25, 2014. It was textbook if a textbook had already been written. Her case was writing the textbook. Other Haplo Transplants have occurred since then. We continue to educate people about the National Donor Marrow Program and the ease to join the registry. Our story is told more fully on www.kjkdancingthroughtherain.blogspot.com and www.dock8connection.org.

Kassidy's memories of Kelsey: She was very nice to me and very good at dancing. I remember her teaching me dance. She was outgoing. I wanted to be outgoing like she was. She was very friendly and could make friends with anybody. She wasn't afraid to express how she felt and what she believed in. Kassidy was 9 when Kelsey went home.

Konner's memories of Kelsey: I used to walk into room and find her reading her Bible. She came into my room at night and asked if I had any questions about what I was reading. She encouraged me to dance and learn the splits. One day we did the splits together. Whenever I'm at tap and not striving to do my best, I think about how she would do it and that pushes me on. When I'm not at home, I remember to be nice to people because Kelsey showed kindness to everyone. Remembering her life encourages me to live my life to the fullest. Konner was 11 when Kelsey went home. 

Karly's memories of Kelsey: When you sat by her, she had the tendency to pinch you with her toes, then tickle you. She helped me at the hospital to be brave. We would share a room, so when the phlebotomist came in she would stand behind him and make faces when it was my turn to take my mind off it. She displayed courage, bravery and how to overcome so then I would try to be like her. She seemed perfect to me. She found joy amidst everything. She had the loudest laugh in the room. She was dependable. She knew what to say and how to say it. Karly was 16 when Kelsey went home.

Trent's memories of Kelsey: Cupcakes! Haven't had one as good as hers since then. Trent was 18 when Kelsey went home.

Tyler's memories of Kelsey:She taught me to like rock and not be afraid of people with tatoos. I loved hanging out in her apartment when we were in college. P.O.D- Goodbye for Now. https://youtu.be/plGETDmXw5g

This song reminds me of Kels. Tyler was 20 when Kelsey went home.

Life with certainty is faith and trust in our God. We didn't choose to live life without her, so there is that sadness that will remain, but confidence....God knows exactly what is next. He knew then, and He knows now.

Love,

Mom

18 months post-transplant

Praising Jesus that her transplant has gone so well! She is still thriving! Her BP continues to stay steady. We have seen her Indiana nephrologist, interventional radiologist, and cardiologist. We have made some changes and as usual it is the balance between heart and kidney happiness. Karly makes daily changes depending on what her body is doing. We leave for the next round of NIH visits on February 24. We haven't received a schedule, but it should be more of the usual. We look forward to seeing our NIH friends and other DOCK8 families.

God faithfully leads us day by day. We still pray for whatever steps God wants us to take each day. I guess it is fair to say that we are quite flexible and able to change a direction quickly. Karly posted some thoughts, and I wanted to share them here in case you hadn't seen them yet.

My thoughts on 1 Corinthians 12...

KARLY J. KOCH·WEDNESDAY, JANUARY 6, 2016

 SO I was just reading these verses in 1 Corinthians and felt inspired to share my thoughts...

Unity and Diversity in the Body

12 Just as a body, though one, has many parts, but all its many parts form one body, so it is with Christ. 13 For we were all baptized by[c] one Spirit so as to form one body—whether Jews or Gentiles, slave or free—and we were all given the one Spirit to drink. 14 Even so the body is not made up of one part but of many.

15 Now if the foot should say, “Because I am not a hand, I do not belong to the body,” it would not for that reason stop being part of the body. 16 And if the ear should say, “Because I am not an eye, I do not belong to the body,” it would not for that reason stop being part of the body. 17 If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? 18 But in fact God has placed the parts in the body, every one of them, just as he wanted them to be. 19 If they were all one part, where would the body be? 20 As it is, there are many parts, but one body.

21 The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” 22 On the contrary, those parts of the body that seem to be weaker are indispensable, 23 and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, 24 while our presentable parts need no special treatment. But God has put the body together, giving greater honor to the parts that lacked it, 25 so that there should be no division in the body, but that its parts should have equal concern for each other. 26 If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.

27 Now you are the body of Christ, and each one of you is a part of it. 28 And God has placed in the church first of all apostles, second prophets, third teachers, then miracles, then gifts of healing, of helping, of guidance, and of different kinds of tongues. 29 Are all apostles? Are all prophets? Are all teachers? Do all work miracles? 30 Do all have gifts of healing? Do all speak in tongues[d]? Do all interpret? 31 Now eagerly desire the greater gifts.

1 Corinthians 12:12-31

I find it so amazing how God has made the body, and how He has made the Body of Christ. I just finished a semester of Anatomy & Physiology, and while it’s a hard subject to understand, I am fascinated with it! I think about how every little thing is necessary in the body because of its specific purpose. Without just one atom, cell, chromosome…etc., the body functions differently or is compromised. For example, my heart started failing when my renal arteries started to narrow and dysfunction due to DOCK8. When the heart is given resistance through narrow pathways, it feels the need to increase the flow of blood more forcefully.  As internal vessel pressure increases, the heart works harder. So the narrow resistance made my heart work entirely too hard, and eventually my heart compromised its shape to make sure it was performing to the level it needed to. The structure change caused functional difficulty which is heart failure. Even my small arteries are important for my body to function.  Another example is the production of a tiny little hormone called cortisol or hydrocortisone. Produced by the adrenal glands, this little guy has a huge job with handling the body’s stress. Being that I am adrenally insufficient (where my adrenal glands do not produce cortisol), I have to provide myself with the correct amounts of cortisol every day by taking it in pill form. I learned that stress can take over very quickly when the body doesn’t have enough cortisol to cope. I found myself in a high stress situation where I needed more cortisol, but didn’t know how much cortisol I really needed. I became very sick, debilitated, and could not do any normal day tasks. This little guy means life or death in some situations, and I am taken aback when I realize how perfectly each aspect of the body was designed. I can’t believe that such an intricately, complex design can just happen out of nowhere. What I can believe, though, is a loving Creator who spent time thinking about every little detail, thinking about all the different personalities as he laced every part together, and the tears of joy streaming down his face when his design is complete. Every single part is just as important as the other, and it is the same in the Body of Christ. Every member of the body of Christ is absolutely necessary. We were all made especially different for specific purposes. With all of our different talents, skills, and abilities, we are all being used in God’s interwoven plan to produce something bigger and better. If we were all made the same, we would have the same purpose and then only one task is getting accomplished. God loves us more than that, though. He has an individualized, thought out plan for each one of us, and He desires to use each one of our plans in His masterpiece. We get to be a part of his wondrous plan. He didn’t have to let us in on this, but He loved us so much that He couldn’t resist. How amazing is it that such a supreme, omega God would yearn for us to be in His presence, and to be used as tools in His blueprint?

After the bilateral renal angioplasty...

Karly's Bilateral Renal Angioplasty went so much better this time in terms of pain. The pain is what she was dreading the most. The doctor came in, and we shared how much pain she was in during the procedure in March 2014. He said he couldn't do much about it, because they needed her alert to take deep breaths at certain times... but he would try. I guess that meant she would be pretty alert. Well, Praise Jesus, all was accomplished, alert enough to take deep breaths and pain free enough to be happy about it. Her recovery went well...6 hours flat on her back...not much pain...only when they pushed on it. Her problems came later. Karly's adrenal glands don't work and haven't for years. We literally give her the adrenaline her body needs. Going into the procedure she must have an elevated dose so her body won't go into shock. Saturday went well until her body needed more adrenaline. She had a bad headache, nausea, vomiting, little appetite, was weak and very fatigued. After speaking to her NIH doctor Sunday morning, we gave her another elevated dose. She felt a little better again, but all symptoms still present. Yesterday she was still about the same. Tonight, we have seen a little break through. Now she is just taking her normal dosing. The next issue we found was her BP came down nicely, but because her body has been acclimated to the high BP, the nice new BP was causing her to feel bad, nauseous, and a whoosh in her head. She was on 4 BP medications. She stopped 2 immediately after the procedure. Her BP this morning before any medications was a little low for her...not most people. Her BP stayed down all day only taking 1 BP medication. She was so used to walking down the hallway and see her BP rise. Now, activity does not make it rise. Praise Jesus! And Praise Jesus she is only on 1 BP drug again. She finally was able to eat a meal tonight. Her body seems to be finally adjusting to the new changes.

We travel to NIH on Monday-Wednesday. She will see an Allergist, Endocrinologists, get vaccines, and get an ECHO to make sure her heart has made it through the last 3 months of high BP and strain. It will be a quick trip(at least we hope so). It will be good to see our special doctors! We always look forward to Christ-led encounters. Please pray for our trip and God's best!

Love,
Mom

15 months post-transplant

Karly is doing phenomenal. She is serving our Lord and Savior everyday. She is our beloved daughter. She's an amazing sister. She is Zach's girlfriend.  She is taking 2 classes. She is going to meetings that involve Ball State Cru leadership. She's helping pioneer Cru at Ivy Tech. She is leading a new Small Group at Ivy Tech and is in one at BSU. She is a survivor. She's a miracle. She is thriving! Praise the Almighty Father for the work He he has done and is doing in her life!

I am posting the most recent video explaining briefly some of the journey just before transplant and following transplant.

Her bilateral renal angioplasty is this Friday, Nov. 13 at 9am. Please be praying with us. Her BP is really high without any medication. She is taking 4 drugs to get it down and by morning, she starts all over again. We don't exactly know what we wish to happen, but it is to have God's best. If this angioplasty takes the BP down to normal again, we'd be quite happy. But then, is this a lifetime of angioplasty in her future? If they find that the arteries are not blocked and the cause of this high BP, then what ramifications will she be looking at? We already know that she has Stage 3 Chronic Kidney Disease at the age of 21. So you see, we really don't know what we wish for, but praying God's will be done. Thank you for praying with us!
Love,
Mom

1 yr post-transplant appointments

The weeklong appointments proved to be informing and interesting. It was the usual run-through of CT's, MRI's, dermatology, dental, eye, dexa scan, allergy, nephrology, pulmonary, echo, stress test, bone marrow biopsy, gynecology, cortisol stem test, fluids, ENT, 1 yr. vaccines, IVIG,  and consults with doctors. We had a few surprises; she has some chronic GVHD in two places that we were unaware of. Fortunately, it is asymptomatic most of the time. It can flare as it did in her mouth. She had sores in her mouth that looked ulcerative at one point, and I took photos of them. They eventually didn't hurt anymore, but didn't go away either. At least now, we know what they are. We can treat with an oral steroid gel when it happens again. Patients with cGVHD are at a significantly increased risk for developing oral cancer and should undergo an oral cancer screening at least once a year. Since oral cGVHD can look similar to early oral cancer, it is best to be seen by a specialist who is familiar with these conditions. Periodic biopsies of suspicious lesions may be necessary. Karly now has osteoporosis of the spine with a few other areas not that far behind. With all that she has been through with chemo, radiation, lack of calcium, steroids, this is not a surprise. The thing now is to treat it the best we can. With the lack of hormones in her body, we are adding something like a combi-patch. This will help with hormones and the osteoporosis. Some of the tests we were hoping would be improved like the arteries, ECHO, and the PFT, but they are remaining the same. This is okay. We have patience. Some were improved like her skin...she didn't have one spot of diseased skin for a biopsy....oh rats...but she let them do it anyway for research. She's just awesome like that. Her allergy testing showed she was more allergic testing positive to milk(again), and also to Timothy Grass and soy. She's also had some weird lip, tongue, cheek swelling when eating things she clearly isn't allergic to, yet, is she? Her blood work was looking very good. Her eyes are dry, but not thinking it is GVHD at this time. She failed her Cortisol Stem Test. She has adrenal insufficiency. She wears a bracelet to alert the public in the event of a trauma or stressed situation; she can go into adrenal shock as I understand it. We have an emergency dose at home and will carry one with us. She was trying to wean the hydrocortisone this past week, but going down with just the one increment caused her fatigue and bad headache and joint pain. We will try to wean next semester when she might have a break from school. Her MRI of the abdomen still shows very little flow to her kidneys. She did another renal ultrasound last week showing things are pretty much okay, at least they think so. However, since she clinically seems to be worsening, they have decided to do another bilateral renal angioplasty. We hope that this procedure will cause her blood pressure to go down and she can come back off of the 3 other drugs she's been put on. Her Cardiopulmonary Stress Test was pretty good. She has a mild aerobic impairment, she reached her maximum cardiac/cardiovascular capacity, and she has a mild diffusion impairment. All to mean her heart causes her to not go as far or as much as she would like to go. Things to pray for: the angioplasty goes smoothly, blood pressures return to normal status, come off other BP drugs, her weight will decrease, she will stop holding fluid, she doesn't get flares from GVHD, her food allergies go away, her body starts making cortisol so she doesn't have to take it anymore, and they find the right mix of hormones which will help several things. This almost sounds like a long list, right? In retrospect...this list is very short and manageable. She is grateful beyond words to be so much better. She doesn't seem to let these things get her down. She goes one day at a time and jumps, hurdles, or crawls over whatever she comes up against. God has been faithful time and time again. He will not fail her. She is a miracle! Thank you Jesus!

Oh joy, she's almost 1 yr. post-transplant!

As we approach July 25, I am feeling extremely emotional. What a journey it has been. What a heap of learning we've done. Since the diagnosis of DOCK8 in March of 2009, no one could have guessed where we would be these 6 years later. Many DOCK8 children have died. Some died without ever getting a diagnosis. HOWEVER, many more have lived because of the diagnosis. NIH worked relentlessly to discover what was happening to our kids. With the first eleven kids grouped together and 4 of those dying before it went to print, we knew this was going to be a fierce battle. Kelsey was patient 5-1 and Karly was patient 5-2. Patient 1-1 was successfully transplanted. Patients 2-1, 3-1, 7-1, and 8-1 died. Patient 4-1 was successfully transplanted and his sibling, patient 4-2 should transplant pretty soon. Patient 6-1 was successfully transplanted and patient 8-2 died. We have met many friends along this journey and you all know who I mean, yes you. Without the support of these friends, family, and foremost our Lord and Savior, we would be a sorry mess. We learned what we needed along this journey to grow us and sustain us in the darkest times. We found joy and thankfulness at every turn. I cannot even voice my gratitude without crying. I am overwhelmed with God's love. I look at the strength, endurance, growth, perseverance, joy, laughter, love, faithfulness, and peace we've experienced as a family and as individuals.  I am blessed beyond measure!














Karly remains very stable. She has not been sick once since we've been home. Her heart is stronger than it was in March, and we pray that it will continue to improve until it is normal. Her skin looks beautiful. She can sleep and eat like normal people, well except for the nasty food allergies which haven't improved, but we hope they will go away as she gets stronger. We hope that we see a few more medications fall off the list by our return home in August. Her kidneys haven't seemed to heal themselves. The balloons in the arteries seem to still be holding, so blood is getting to the kidneys. The vascular issues were expected to improve. It was suggested that now we must look closer at the kidneys to try to understand why the CR isn't improving and what should be done. This is not one of NIH's expertise areas. Her heart doctor recommended a kidney doctor at Methodist she will work with. We will see him in August. This remains a concern, but we are so pleased with how she is doing.

Karly has thrived this summer; some days I barely see her.  She is not wearing her mask anymore unless someone near her is exhibiting sick symptoms, then I want to wear a mask also. She will be gearing up for 2 classes this fall...Anatomy and Physiology 2 and Medical Terminology...both in her wheel-house. I'm excited for her!

We still just take one day at a time around here. Matthew 6:25-34 shares Jesus' words about this issue. That was a super great lesson to learn through all of this. We've had a fun summer and it's not over yet. We returned to Lake Michigan last weekend. We went before her transplant last year. It was nostalgic and so different in terms of her health. She played in the water(being very careful not to swallow any lake water) and played in the sand. She played with her cousins. We had a such a happy time. We've been to Maryland, not for a hospital visit, but for a family reunion. We took a trip to Sevierville, Tennessee for Konner's Rising Star Dance Nationals. The weather wasn't that great, but the one day we chose for hiking to the top of Chimney Tops in the Smokey Mountains was excellent.

She had to stop about every 5 minutes, and I had my doubts that she would make it. However, in character for Karly, she persevered to the very top. It was very scary climbing the rocks to the top, but Trent, our mountain man(goat) went up and down that things so many times spotting Kassidy, Karly, and me.

Karly and I will be making her 1 yr. post-transplant visit to the National Institutes of Health from July 26-31. Please pray for our journey in a number of ways...safety, wisdom, positive and informative test results, visits with other Dock8 families and friends, and making new friends. Peace be with you!

Love,

Mom

Day 263-Treating DOCK8 Deficiency at NIAID

This video shows a huge portion of my life(without me being in it). Welcome to NIAID! I love this video because I have grown up in this hospital. I have relationships with these doctors that have studied me and have known me since I started going to NIH in 2001. Brittany is one of the DOCK8 family that I met several years ago. Welcome to part of my world! smile emoticon



Praise God for Dr. Su, Dr. Freeman, Dr. Hickstein, our nurses, friends, and everyone involved at NIH!:)
Love,
Karly

Day 261-Karly's Story

I would like to share all the links to Karly's story since Oct. 13, 2013 to present on this page of the blog. The first video is Karly's take on how, when, or if to choose a bone marrow transplant without a match. The second video is on Feb.1 after her first-ever of its kind, ground-breaking, pioneering haplo-transplant for Dock8. The third video and story is relating a document we used in March of 2014 to give Karly a voice in the event of her death.

https://youtu.be/Bl-CsLyRJsA

http://well.blogs.nytimes.com/2015/03/28/teen-advance-directive-end-of-life-care/?_r=1

This photo is from March 2015. She is beaming!

Day 260

Karly had a trip to NIH on March 11-13. It went well. She is still doing well. All is well. She continues to have either a virus show up on her skin or some GVHD. Neither are bothering her way of life. Her heart and kidney remain stable. We still pray for a full recovery of these organs. She still has some undiagnosed joint pains in her knees, ankles, and feet. X-rays were taken and show some lytic lesions. We will be meeting with a specialist in May. She "badly jammed" her left index finger while playing with the youth at church. We had it x-rayed in Muncie and were told it was fine, just jammed. About 4 weeks later while playing at church again, she hurt the same finger only worse. We had it x-rayed again. This time we were told it was an unstable fracture. I took her to a hand specialist who said that she had a hairline fracture on the first x-ray. Because it had been diagnosed improperly, she continued to use it normally. She wouldn't have crushed the entire knuckle joint the second time had she known. They cannot set it, do surgery, or replace the knuckle. It will need to re-grow(remake itself). She is to keep it moving, so it won't set itself in a particular way. God can make the impossible possible. Please keep praying for us.

Karly's allergies are being tested periodically at NIH in a study trying to determine the extent of allergies post-transplant. Her testing in January revealed that milk could be negative. It will not be challenged until a challenge lab is set-up in a hospital environment. Karly found out the hard way that she is still extremely allergic to egg. She quickly went anaphylactic Tuesday morning when she accidentally ingested some egg that was in a packet of oatmeal...it is now being referred to in our home as "sketchy oatmeal". After 50mg of benadryl, I had to give her an Epi-pen injection, and quickly get her to the hospital. Fortunately, we only live 2 miles away. They quickly accessed her port and gave her a large dose of Prednisone. They were about to paralyze her for an Endotracheal intubation, when finally the Prednisone, along with the other meds started to work. She couldn't really talk or hardly breathe. They admitted her into the Cardiac Intensive Care Unit overnight in case it flared again. After she proved that she could eat on Wednesday, she was released. She will continue Prednisone for about a week with some benadryl. This was the first time in her 20 years I needed to use her Epi-pen. Things can change in a blink of an eye, but our God never changes. He is plenty big enough for all circumstances. Thank you for your continued prayer.
Love,
Mom

Day 202

Things have been going well. She had a little bump in the road in January with her skin about 10 days after she stopped the tacrolimus. We flew to NIH to get a biopsy. As usual, it was atypical. It looked a little like it could be GVHD, but still looked like something viral also. It turns out, it could have been a little of both. However, upon cutting the specimen deeper, it looked viral. It has cleared up now. Things like this can happen. It is best to just roll with it. When I told Karly that we needed to go to NIH to get her skin biopsied, she wasn't totally into it. It seemed like an inconvenience. She had to change a few plans. BUT, what happened when we were there was totally a God thing. Medically, it was reassuring to know what was going on with her skin, and it was prudent to catch it earlier than later in case it was something that could be a real problem. After we saw her doctors and had finished the biopsy, labs, vaccine, and port access and flush, we had the afternoon to visit 3 dock8 patients. We were blessed. For us, meeting dock8 patients is what Karly had wanted after Kelsey died. For others, it is reassuring to know they are not alone. Each of them had never met another person with dock8. We answered many questions, shared some pictures of Karly before and after transplant, and shared contact information. Every detail of meeting these people and the timing was not by chance. God had interwoven this emergency visit to NIH into something beautiful. Karly could see what she thought was a total inconvenience was God in action. It definitely encouraged and strengthened her faith. She was asked earlier that week to share some thoughts at church. When praying about it, she clearly heard the word "interwoven". As she reflected back at 2014, she could see all the interwoven details leading up to her transplant and even now. Even looking back as far as 2009 when she was diagnosed with dock8, her cancer, Kelsey pioneering a double-cord peripheral stem cell transplant. Kelsey's death, then Karly's renal artery stenosis and congestive heart failure, her trip to Panama City Beach, her ICU month, her decision to go ahead to pioneer the haplo-transplant, these things are interwoven together in a way only God could do. At some point in the future we will be chronicling these events to show God directing us along the way. For now, I want to leave you with what Karly shared at church on February 1, 2015. You can watch it at unionchapel.com, watch messages, 2-1-15. I will post her thoughts here as well.
Love,
Mom

"After reflecting on last year’s events, I learned something huge. I began to see how God’s plan is interwoven…with timing, transformation, and what I call divine appointments. To try to keep this as short as possible I will be skipping much of the story, but focusing on the interwoven points.

In January, my doctors became weary of my mysterious hypertension and began searching for the cause. We found Renal Artery Stenosis was causing this hypertension. This caused concern, but so much confusion as to how to treat it. As we were seeking advice from others outside of NIH, it created a new circle of doctors in Indiana who ultimately could focus on the kidneys and heart with the direction of NIH.  I was diagnosed with Congestive Heart Failure at the beginning of March…no one saw this coming! During this process, I was in school and involved with Campus Crusade for Christ. When I heard about the Spring Break Outreach trip to Panama City Beach, Florida, I had started praying about whether that was something I should join.  God was tugging on my heartstrings, and I knew I needed to go to Panama City Beach with Ball State Cru. This conference taught me about sharing God’s word, and the importance of drawing nearer to God. During that week, my Congestive Heart Failure worsened leaving me struggling to breath. NIH flew me directly from Florida to them and immediately into the ICU. The timing of when this happened was not by chance. (It just so happened that…) My mom’s boss was vacationing in Florida only a few miles away, so when I had no convenient way, he helped get needed medication to me while down there and transportation to the airport. I spent the rest of the month in the ICU. NIH knew that I needed to get back to the Indiana doctors for my heart and kidneys, but they had to stabilize me first. Finding the doctors in Indiana prior to this was not by chance.  As soon as I got in their care, my renal arteries (which were 90% blocked) were ballooned, and BP stabilized thereby giving my heart a chance to not work as hard. Another key point during my ICU stay at NIH was the introduction of a document called “Voicing my Choices.” This document gave me a say about my comfort, my care, and my funeral if it came to this. I’ll get back to this in a minute. In April, I was tired of my body failing, and I knew that this was only going to get worse and worse. So with more tugs on my heartstrings, I made the decision to proceed with the Haplo-Transplant. This all seemed like it was happening so fast.

I began to think about my family, my friends, and the possibility of meeting my Creator in Heaven. I had to prepare for the possibility of death, and I was brought to the situation of my older sister.  In preparation, I was in conversations with God. I was seeking His peace. At SERVE in June, during one of the evening “Experiences,” I was prayed for and felt encouraged. I found the peace that passes all understanding. The next week I was at NIH starting the pre-transplant qualifying tests. Again, the timing of prayer was not by chance. God had prepared me. My family had already set aside 2 weeks for a summer vacation meaning my brother, Tyler, had his time off from work which was God’s perfect timing for donating his bone marrow while I was starting chemo. On July 25, I had my life-saving first of its exact kind of transplant. This was the first Haplo-transplant for DOCK8 in the US. They call me a pioneer. Its success has paved the way for the next one in March. I have been blessed with my 14-yr relationship with NIH. This relationship is not by chance. As they have watched me grow up and know who I am and what I believe, my doctors trust me to be a spokesperson for DOCK8; and in a way God has made me an ambassador of hope for my fellow DOCK8 family. I get to meet DOCK8 patients and share encouragement, hope, God’s faithfulness, and my journey.  In reflection of this, I was thinking about how my sister Kelsey and I shared this DOCK8 disease. It was comforting for us to share this disease together. When Kelsey lost her DOCK8 battle, I found this new emptiness. I knew that I wanted to meet others with DOCK8. This began a new path of reaching out and finding others with DOCK8. A path God has blessed. My mom and I had an unexpected trip to NIH last Thursday evening to Friday evening. I didn’t want to go. It was an inconvenience. This short 24-hr trip was a Godsend though. I got a skin biopsy, then I was blessed by spending the rest of the day talking with three DOCK8 patients that I found out were there. I am the only DOCK8 person whom each of them has met. One will be the second Haplo-transplant for DOCK8 in March. She was so happy to meet me and ask questions, as I was elated to answer her questions and meet her. What was most exciting was talking with the family from Iran. We had briefly stuck our heads in earlier this month to say, “Hi,” but without a translator it was tough, but they remembered us. God’s timing was yet again perfect, for a translator of Farsi had conveniently met us at the door of the Iranian girl.  We answered so many questions. They were so open. We took photos, shared emails, and developed relationships. This was amazing!

 Back to Voicing My Choices, this document has led to an article in the New York Times. It has also led to my sharing more about this document to other DOCK8 patients. In order for the writer of the story to get a grip on our family she watched the story I did at Union Chapel October 13, 2013. She shared this with her editor and team. They want to expand the story, so another story is in the making this week as a videographer comes from NY to Muncie to follow us around for 5 days. God’s divine appointments…aren’t they miraculous? His plan is an extravagant weave which interlaces my life in ways I can’t comprehend. By honoring God in all things, He makes the impossible possible! Where does this lead me next? I cannot wait to see. Luke 1:37 says, “For with God, nothing shall be impossible.” I truly believe that!"