tag:blogger.com,1999:blog-50094027877192539912024-02-19T08:05:22.844-05:00Dancing Through The RainKJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.comBlogger264125tag:blogger.com,1999:blog-5009402787719253991.post-65900694668926706882020-02-06T11:01:00.002-05:002020-02-06T11:01:31.191-05:009 years ago Kelsey's Homegoing<span style="background-color: white; color: #666666; font-family: Helvetica, Arial, sans-serif; font-size: 12px;">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</span><br />
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<span style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px;">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 </span><span class="text_exposed_show" style="background-color: white; color: #1c1e21; display: inline; font-family: Helvetica, Arial, sans-serif; font-size: 14px;">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, <a class="profileLink" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/user.php?id=27316324&extragetparams=%7B%22__tn__%22%3A%22%2CdK-R-R%22%2C%22eid%22%3A%22ARDQvmYWdbAxaSIngTMXTfkOFSxMZ7Ttu2lQFTAM6gqisomS4Adhp8yHF6OtXgnGDl0CR760ZhUgEb7s%22%2C%22fref%22%3A%22mentions%22%7D" href="https://www.facebook.com/enigmajo?__tn__=%2CdK-R-R&eid=ARDQvmYWdbAxaSIngTMXTfkOFSxMZ7Ttu2lQFTAM6gqisomS4Adhp8yHF6OtXgnGDl0CR760ZhUgEb7s&fref=mentions" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" title="Kelsey E. J. Koch">Kelsey E. J. Koch</a> for the life you lived so well! <span class="_5mfr" style="font-family: inherit; margin: 0px 1px;"><span class="_6qdm" style="background-image: url("https://static.xx.fbcdn.net/images/emoji.php/v9/f33/1.5/16/2665.png"); background-repeat: no-repeat; background-size: contain; color: transparent; display: inline-block; font-family: inherit; font-size: 16px; height: 16px; text-shadow: none; vertical-align: text-bottom; width: 16px;">♥️</span></span></span>KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-91036860608056901222017-02-02T09:23:00.002-05:002017-02-02T09:23:31.914-05:00Kelsey's 6 year home-going anniversary<div align="center" class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; text-align: center;">
<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">Six Years Home and Still His Miracles<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">Fact three, my friend from the game hadn't been to many games this
year either, this possible was the third.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">Fact four, Kelsey's home going was 6 years ago on the second of
February.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">So with these facts let me try to explain what I see as God
marvelous grace and love for all people.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">Coincidence or divine appointment, you decide.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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.<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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! :)<o:p></o:p></span></div>
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<span style="font-family: Helvetica, sans-serif; font-size: 12pt;">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!<o:p></o:p></span></div>
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<o:p>Dad</o:p></div>
KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com3tag:blogger.com,1999:blog-5009402787719253991.post-35957114238066445352016-09-24T21:32:00.002-04:002016-09-24T21:32:39.303-04:00An 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.<br />
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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.<br />
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<h1 class="passage-display" style="background-color: white; box-sizing: border-box; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: 14px; font-weight: 500; line-height: 1.1; margin: 0px 0px 20px;">
<span class="passage-display-bcv" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; display: inline; font-size: 18px; margin: 0px; padding-right: 10px;">James 4:14-15</span><span class="text Jas-4-14" id="en-NIV-30352" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-size: 16px; line-height: 24px;"><span class="versenum" style="box-sizing: border-box; font-family: Arial; font-size: 12px; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;">14 </span>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.<span class="crossreference" data-cr="#cen-NIV-30352A" data-link="(<a href="#cen-NIV-30352A" title="See cross-reference A">A</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span></span><span class="text Jas-4-15" id="en-NIV-30353" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-size: 16px; line-height: 24px;"><span class="versenum" style="box-sizing: border-box; font-family: Arial; font-size: 12px; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;">15 </span>Instead, you ought to say, “If it is the Lord’s will,<span class="crossreference" data-cr="#cen-NIV-30353B" data-link="(<a href="#cen-NIV-30353B" title="See cross-reference B">B</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> we will live and do this or that.”</span></h1>
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<span class="text Jas-4-15" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-size: 16px; line-height: 24px;"><h1 class="passage-display" style="background-color: white; box-sizing: border-box; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: 14px; font-weight: 500; line-height: 1.1; margin: 0px 0px 20px;">
<span class="passage-display-bcv" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; display: inline; font-size: 18px; margin: 0px; padding-right: 10px;">Matthew 6:34</span><span class="versenum" style="box-sizing: border-box; font-family: Arial; font-size: 12px; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;">34 </span><span style="font-size: 16px; line-height: 24px;">Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.</span></h1>
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<span style="font-size: 16px; line-height: 24px;">As always I thank God for you, our prayer warriors, our family, our friends.</span></div>
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<span style="font-size: 16px; line-height: 24px;">Love,</span></div>
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<span style="font-size: 16px; line-height: 24px;">Mom</span></div>
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KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com1tag:blogger.com,1999:blog-5009402787719253991.post-89462417149468351992016-07-31T10:40:00.002-04:002016-07-31T11:09:27.111-04:002 Years OldWe 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!"<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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I will end with Karly's life verse. It seems quite appropriate. Proverbs 3:5-6:<br />
<span class="text Prov-3-5" id="en-ESV-16461" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px; position: relative;">"Trust in the <span class="small-caps" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-variant: small-caps;">Lord</span> with all your heart,</span><br />
<span class="indent-1" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px;"><span class="indent-1-breaks" style="box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Prov-3-5" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">and <span class="crossreference" data-cr="#cen-ESV-16461B" data-link="(<a href="#cen-ESV-16461B" title="See cross-reference B">B</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>do not lean on your own understanding.</span></span><br />
<span class="text Prov-3-6" id="en-ESV-16462" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-family: "arial"; font-size: 12px; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">6 </span>In all your ways <span class="crossreference" data-cr="#cen-ESV-16462C" data-link="(<a href="#cen-ESV-16462C" title="See cross-reference C">C</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>acknowledge him,</span><br />
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KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-6944539100955695292016-05-25T14:55:00.000-04:002016-05-25T14:55:00.563-04:002 months before the 2 yr anniversary of her experimental transplant<span style="background-color: white; color: #444444; font-family: "georgia" , "times new roman" , serif;">Hi All,</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white;"><span style="color: #444444;">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</span></span><span style="color: #111111;"><span style="background-color: white; line-height: 24px;">. He said that he needed to make a new tear duct that bypasses the old blocked one. He performed a </span></span><strong style="background-color: white; box-sizing: border-box; color: #333333; font-size: 15px; line-height: 21.4286px;">Dacryocystorhinostomy</strong><span style="background-color: white; color: #333333; line-height: 21.4286px;"> this morning. It is the surgical procedure usually used to treat most cases of blocked tear ducts in adults and rarely in children.</span><span style="background-color: white; color: #333333; line-height: 21.4286px;">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. </span></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white; color: #333333; line-height: 21.4286px;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRR7Ukfh8LM3RWG14n68hWG3Gw8qosJ_W76-dX6c4AEk16UHfi6kWxGvYBl7VJGc9p5CdTxM2wMB49Q7-zRbKDFAVHVDWeiArMZgdywRvyVzw1RcXbiFzHLEY4w0NBq-ceeiyxOABGrQbl/s1600/IMG_20160525_105658.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRR7Ukfh8LM3RWG14n68hWG3Gw8qosJ_W76-dX6c4AEk16UHfi6kWxGvYBl7VJGc9p5CdTxM2wMB49Q7-zRbKDFAVHVDWeiArMZgdywRvyVzw1RcXbiFzHLEY4w0NBq-ceeiyxOABGrQbl/s320/IMG_20160525_105658.jpg" width="240" /></a></span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white; color: #333333; line-height: 21.4286px;"><span style="line-height: 21.4286px;">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. </span></span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white; color: #333333; line-height: 21.4286px;">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!</span></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white; color: #333333; line-height: 21.4286px;">Thank you for standing strong with us throughout the years. I hope to do a better job communicating, but thanks for your patience.</span></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white; color: #333333; line-height: 21.4286px;">Love,</span></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white; color: #333333; line-height: 21.4286px;">Mom</span></span>KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-34540913161216141942016-02-02T21:31:00.000-05:002016-02-02T21:31:52.707-05:005 years ago...Kelsey's Homegoing<div style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px;">
This is from Kelsey's Memorial page on Be The Match.</div>
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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.</div>
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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 <a data-mce-href="http://www.kjkdancingthroughtherain.blogspot.com" href="http://www.kjkdancingthroughtherain.blogspot.com/">www.kjkdancingthroughtherain.blogspot.com</a> and <a href="http://www.dock8connection.org./">www.dock8connection.org.</a></div>
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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.</div>
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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. </div>
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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.</div>
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Trent's memories of Kelsey: Cupcakes! Haven't had one as good as hers since then. Trent was 18 when Kelsey went home.</div>
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px;">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. </span><a href="https://youtu.be/plGETDmXw5g" style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px;">https://youtu.be/plGETDmXw5g</a></div>
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px;">This song reminds me of Kels. Tyler was 20 when Kelsey went home.</span></div>
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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.</div>
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Love,</div>
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Mom</div>
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KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-85617857601960495802016-02-02T13:10:00.003-05:002016-02-02T13:18:53.128-05:0018 months post-transplantPraising 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.<br />
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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.<br />
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<span style="font-family: "Times New Roman","serif";">My
thoughts on 1 Corinthians 12...<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif";">KARLY J.
KOCH·WEDNESDAY, JANUARY 6, 2016<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif";"> SO I was just reading these verses in 1
Corinthians and felt inspired to share my thoughts...<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif";">Unity
and Diversity in the Body<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif";">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.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif";">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.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif";">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.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif";">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.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif";">1
Corinthians 12:12-31<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif";">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?<o:p></o:p></span></div>
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KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com1tag:blogger.com,1999:blog-5009402787719253991.post-78253201120973073092015-11-17T19:53:00.000-05:002015-11-17T19:53:03.575-05:00After 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.<br />
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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!<br />
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Love,<br />
MomKJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com1tag:blogger.com,1999:blog-5009402787719253991.post-43688211682709929712015-11-10T10:50:00.004-05:002015-11-10T10:50:47.420-05:0015 months post-transplantKarly 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!<br />
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I am posting the most recent video explaining briefly some of the journey just before transplant and following transplant.<br />
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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!<br />
Love,<br />
MomKJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-27095608375757906902015-09-08T18:17:00.001-04:002015-09-08T18:50:15.776-04:001 yr post-transplant appointments<span style="background-color: #45818e; color: white;"><span style="font-family: Georgia, Times New Roman, serif;">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, </span><span style="font-family: Georgia, 'Times New Roman', serif;">fluids, </span><span style="font-family: Georgia, 'Times New Roman', serif;">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. </span><span style="font-family: Georgia, 'Times New Roman', serif; line-height: 20px;">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!</span></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; line-height: 20px;"><br /></span></span>KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com3tag:blogger.com,1999:blog-5009402787719253991.post-45553578502745447522015-07-22T21:41:00.002-04:002015-07-29T22:11:05.178-04:00Oh 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!<br />
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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.<br />
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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!<br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWF9Mo6VUvGMzjgnAwQu3MOIIsvRwB55XNKZG3qTlBBgJuzSFuANvrieapYSVgEIbmm2ZufwcdKQeklOaad4Zcx4Y7HfOAGy7tH0FWaWZdjYpl1IZmFBONXlfZQzRwaLT8YDbXppT2v4Fn/s1600/11140293_10153594201833974_108167292631764340_n+%25282%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWF9Mo6VUvGMzjgnAwQu3MOIIsvRwB55XNKZG3qTlBBgJuzSFuANvrieapYSVgEIbmm2ZufwcdKQeklOaad4Zcx4Y7HfOAGy7tH0FWaWZdjYpl1IZmFBONXlfZQzRwaLT8YDbXppT2v4Fn/s320/11140293_10153594201833974_108167292631764340_n+%25282%2529.jpg" width="298" /></a>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.<br />
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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!</div>
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KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com1tag:blogger.com,1999:blog-5009402787719253991.post-8690365911387246732015-04-14T16:41:00.002-04:002015-04-14T16:41:25.628-04:00Day 263-Treating DOCK8 Deficiency at NIAID<span style="background-color: white; color: #141823; font-family: helvetica, arial, 'lucida grande', sans-serif; font-size: 14px; line-height: 19.3199996948242px;">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! </span><i class="_4-k1 img sp_NEvEtUlpxxN sx_b9e366" style="background-color: white; background-image: url(https://fbstatic-a.akamaihd.net/rsrc.php/v2/yi/r/0md5QvUAw37.png); background-position: 0px -775px; background-repeat: no-repeat; background-size: auto; color: #141823; display: inline-block; font-family: helvetica, arial, 'lucida grande', sans-serif; font-size: 14px; height: 16px; line-height: 19.3199996948242px; vertical-align: -3px; width: 16px;"><u style="display: inline !important; left: -999999px; position: absolute;">smile emoticon</u></i><br />
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<span style="background-color: #f6f7f8; color: #141823; font-family: helvetica, arial, 'lucida grande', sans-serif; font-size: 12px; line-height: 16.0799999237061px;">Praise God for Dr. Su, Dr. Freeman, Dr. Hickstein, our nurses, friends, and everyone involved at NIH!:)</span><br />
<span style="background-color: #f6f7f8; color: #141823; font-family: helvetica, arial, 'lucida grande', sans-serif; font-size: 12px; line-height: 16.0799999237061px;">Love,</span><br />
<span style="background-color: #f6f7f8; color: #141823; font-family: helvetica, arial, 'lucida grande', sans-serif; font-size: 12px; line-height: 16.0799999237061px;">Karly</span>KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-54724357593554056542015-04-12T18:07:00.002-04:002016-03-11T13:51:57.768-05:00Day 261-Karly's Story<br />
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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.<br />
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<a href="https://youtu.be/Bl-CsLyRJsA">https://youtu.be/Bl-CsLyRJsA</a><br />
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<a href="http://well.blogs.nytimes.com/2015/03/28/teen-advance-directive-end-of-life-care/?_r=1">http://well.blogs.nytimes.com/2015/03/28/teen-advance-directive-end-of-life-care/?_r=1</a><br />
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This photo is from March 2015. She is beaming!KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-75884681017196138752015-04-11T23:04:00.002-04:002015-04-11T23:04:13.838-04:00Day 260Karly 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.<br />
<br />
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<span style="font-family: Arial, Helvetica, sans-serif;">,</span> 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.<br />
Love,<br />
MomKJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-65127704629106811502015-02-12T13:22:00.000-05:002015-02-12T13:22:01.461-05:00Day 202Things 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 <a href="http://unionchapel.com/">unionchapel.com</a>, watch messages, 2-1-15. I will post her thoughts here as well<a href="http://unionchapel.com/"></a>.<br />
Love,<br />
Mom <br />
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 150%;">"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.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 150%;">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. <span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>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 “<u>Voicing my Choices</u>.”
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.</span></div>
<div class="MsoNormal" style="line-height: 150%;">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 150%;">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.<span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>We answered so many questions. They were so
open. We took photos, shared emails, and developed relationships. This was
amazing!</span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 150%;"><span style="mso-spacerun: yes;"> </span>Back to <u>Voicing My Choices</u>, 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!"</span></div>
KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com1tag:blogger.com,1999:blog-5009402787719253991.post-57285827841613473712015-01-24T17:31:00.001-05:002015-01-24T17:31:16.638-05:00Day184-6 months post-transplant Karly was at her Congestive Heart Failure doctor on Friday. What a great report we were given. The EKG is normal, so the medications must have been the culprit. Her heart sounds good. She may want to add another heart drug so it can work less hard, but all in all GREAT! Her kidneys are a little happier. She will be getting another ultrasound of her kidneys in the next month or two to see how the pressures are going. If it has worsened, then she will need to have them ballooned again. If remaining the same, then just keep doing what we are doing and add the heart medication. Since stopping the medications 2 weeks ago, we haven't noticed much. Her skin has been acting up atypically, but so far she can manage and live with it. Big news was that she tested negative to milk at her 5 month appt. They have a new person at NIH that will be setting up a food challenge lab that Karly will qualify to be part of when it is ready. This is exciting. If this can happen, then there is hope for other foods to follow. She can only imagine.<br />
<br />
She started her class 2 weeks ago. She is able to enjoy many things that make her happy. She is able to sleep more normally. She can take everything in pill form now and without cutting anything in half. She is eating without getting any food stuck. She has normal people hours. It is so cool not to travel to NIH every 3 weeks, but I have to say I miss our people there. We do stay in touch though.<br />
<br />
Dillon went to be with our Lord Jesus on January 12. His family needs continued prayers through this time and times to come. His younger sister also has DOCK8. She will be much in the same thought processes as Karly having lost an older sibling to this disease. It makes me so sad. I feel this loss for this family and what is to come. Please stand with us in prayer. "For our citizenship is in Heaven, from which we also eagerly await for the Savior, the Lord Jesus Christ." Philippians 3:20<br />
<br />
Kelcy will be traveling with her mom later this month to see if her mom can be her liver transplant donor. They have a long road to travel. Please stand in prayer with us for them.<br />
<br />
We just don't go to far ahead of ourselves. We certainly have enough to handle in just one day, don't we? "The mind of man plans his way, but the Lord directs his steps." Proverbs 16:9<br />
<br />
Love,<br />
MomKJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-75758526205771078722015-01-10T16:18:00.000-05:002015-01-10T16:18:55.748-05:00Day 169 1 Thessalonians 5:16-18, "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." This verse is one that describes where we are right now.<br />
We are so joyful in Karly's progress. Her doctors claim her as their poster child for the DOCK8 Haplo-Bone Marrow Transplant. They are so pleased with where she is at this point. They even brought in a couple Johns Hopkins doctors to affirm their decision to take her off the nasty Tacrolimus drug. This is huge. They fully expect her to continue to do well. What could happen? Well, she might feel sicker as the cells really go after the infections still in her body. She could develop more GVHD of the skin and gut. BUT do we expect this, NO we do not! Is she still very susceptible to infections, the flu, etc, yes. She must be very careful. If you know you are sick or have been with someone who is sick, please keep you distance. She is wearing a mask and using hand sanitizer, but we must remain careful. She went through a battery of tests on Thursday. She had her cortisol stem test and Endoscopy on Friday. She failed the cortisol test badly, but they are confident this will eventually return to normal. Her EGD was so encouraging, because the eosinophilic esophagitis is getting better. Before you could visually see the eosinophils because the disease was very severe, but now they will need to be counted under a microscope. They challenged her on Thursday in the clinic with swallowing a couple pills. She did it without any problems. This is huge. Now she can start taking all her medications in pill form. Two advantages of this are: taking them once a day, and she will feel less nauseous. The liquid forms of these drugs are nasty. To summarize some of the test results, I'll start with her lung function which appears to be better(not normal), her ECHO is holding at 40%(big improvement from 15%), her chest CT looks good, and her sinus CT is better. Her sinuses are one place the released cells will be working on. Her kidney function is still a problem, but we fully have hope this will get better off the Tacrolimus plus a few other drugs. Her BP is stable although runs a bit high. She appears to be holding some fluid, but as the Creatinine improves we can give her better heart medications. The only negative issue was her EKG which is showing a Long QT syndrome (LQTS) which is a heart rhythm disorder that can potentially
cause fast, chaotic heartbeats. These rapid heartbeats may trigger a
sudden fainting spell or seizure. In some cases, your heart may beat
erratically for so long that it can cause sudden death. This might explain some of her erratic almost fainting spells and lightheadedness. She is wearing a heart Holter monitor for the next 48 hours. A long QT is often associated with medications, so this is a big reason for dropping 4 medications. Again, we hope this is the cause, then it is easily fixed. She will be seeing her Cardiologist on January 23 and getting a repeat EKG. As you hear the good and not so good, please thank God for all that He has done and lift up these new concerns.<br />
This visit was speedy fast and packed full, but we still managed to see most of our favorite people(yeah, you know who you are). Our hearts remain heavy for Dillon and Kelcy. Dillon, a 20 yr old with DOCK8, who was transplanted in March 2014 remains on a ventilator sedated. He needs a miracle. Kelcy, a 10 yr old with DOCK8, has a tough road ahead. First, she will need a liver transplant, then the bone marrow transplant. Her mom writes, "Please send us tons of Prayers!! We're getting ready to go back up to
Maryland/Washington. We will be going through the whole process of Kelcy
& I being tested to make sure everything is good enough for the
Liver Transplant, and I am healthy enough to be her living donor. I'm so
excited things are moving forward but nervous at the same time. It will
be the last week of this month." Our friends Ellen and Erin got good news yesterday. Erin is in remission from her cancer, and she is almost engrafted. They will get to travel home on Monday. Erin has GATA2 Deficiency Disease(another primary immunodeficiency disease) and was on Karly's transplant floor getting ready for her transplant. Her mom, Ellen, and I became fast friends this summer when we met on the transplant floor. We are so thankful for this good news. I was able to meet face to face the mom of another young DOCK8 girl from Iran who is Day 3 of her transplant. I had spoke on the phone with this mom a few months ago via a translator. I was very grateful to meet her, her daughter, and her husband. May God grant us favor with this relationship. There are so many things to pray about, hence the "pray continually". Please pray with us for these things.<br />
We give thanks in all circumstances, the good and not so good. God is faithful and trustworthy. We believe this no matter the circumstance. My co-worker lost her 2 oldest girls, 18 & 16, on January 2 in a tragic accident. The circumstances feel unbearable, but we know that God is faithful and trustworthy. Please pray for this family. Pray they put their HOPE in Jesus, and they will be protected from depression and self-pity. Hope connects us to heaven where her girls are residing. May they cling to the Father and their burdens be lightened. Romans 12:12, "Be joyful in hope, patient in affliction, faithful in prayer." and Psalm 46:1, "God is our refuge and strength, an ever-present help in trouble."<br />
Thank you my friends!<br />
Love,<br />
Mom <br />
<br />
<br />KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-48108024741090327392014-12-25T20:49:00.002-05:002014-12-25T20:54:31.096-05:005 month birthdayI felt like I just needed to give a brief update as today is Karly's 5-month birthday! She is doing so well. This is the most normal we've seen her in 5 years, so we have much to celebrate. She still goes for weekly labs, and we have been very happy with the results. The Creatinine is still high, but has been 1.9 for 2 weeks. We continue to just monkey around with the dosing of things and hang tough until we can start to wean them. We ask for prayer during this flu season, since the vaccine wasn't correct this year. We are remaining very vigilant with mask and hand washing. We return to NIH on January 7 for her 6-month check up even though it is early. Why? The good news is that she will be able to take the PTA class she had to drop last spring because of her heart and renal condition. What a praise! We are not sure how long that visit will be until they see her, but it shouldn't be very long. We look forward to seeing some friends we've met and also look forward to meeting others.<br />
<br />
We had a Blessed Christmas! Being together and making those memories...fun, fun, fun!<br />
<br />
I have been missing Kelsey. I've been dreaming of her. I've been wishing to give her big gushy hugs. I am thankful that I will see her again. I also think of my dad who died 5 yrs. ago tomorrow. We reminisce often about his silliness, his stories, his ways, and we cherish the memories we have as we continue traditions we had with him.<br />
<br />
All I can say is love those around you for we do not know what tomorrow will bring. Live life with thanksgiving for all you have is from God.<br />
<br />
Love,<br />
MomKJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-13373013778713999812014-11-16T19:25:00.000-05:002014-11-16T19:25:00.567-05:00Day 114It is great to be home! I guess that is why I haven't written for awhile. I keep seeing things that were patiently waiting for my return. Two of the biggies were: Kassidy wanted to change rooms and I wanted to get the van back into the garage. Of course one thing leads to another. Happily, things are going very well. Karly has been getting labs drawn once a week. Except for the Creatinine remaining high, all are stable. We saw her advance congestive heart failure doctor last week. She was happy to see Karly. She would only add another heart medication, so we will see if this happens. It was sorta of based on the kidney ultrasound, so I really don't know if we need to add this medication. The kidney doppler ultrasound is worse than it was in June, but not so bad as to repeat the balloon procedure on the left renal artery unless her Creatinine rises higher and the BP increases as a norm. For the last 2 weeks the CR has remained the same and her BP except for a few days has been good. Karly has been attending her regular activities. Her days are more normal, so she is actually awake during the day. Continue to pray for her health to remain sick-free and stable...better than stable.<br />
<br />
Well silly me. I asked Karly what she wanted to do for Christmas. She wanted to be somewhere warm. We started throwing around the idea of going on a short cruise. After researching if there was even a possibility, I finally asked the doctor if she could go. Sadly, she cannot. It would be too risky for her to be around more germs and so far away from medical care if something would arise. Then we asked her doctor to go too. Well, that got a chuckle. I should have known better. It is so hard to look at her and not think she is well. We will enjoy our time at home. It will be silly and full of warmth anyway.<br />
<br />
Pray in general for us all to be healthy. I am so aware of people sniffling and coughing, so don't be surprised if I don a mask. We have all been healthy since I've been home. Praise Jesus!<br />
Thank you for all your prayers and support! God is still good all the time!<br />
Love,<br />
MomKJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-37232891702466712752014-10-31T14:26:00.001-04:002014-10-31T14:26:11.965-04:00Day 98<span style="font-family: inherit;">Praise His Holy Name! Day 98 and we are at the airport. Everything except Creatinine is good. She did have to start an additional antibiotic, because all her sinuses are growing gram neg bacteria. That's okay...hopefully the sensitivities come back susceptible then we continue on what she's started. Probably going to have ultrasound of kidneys sooner than scheduled. She is almost at her all time high like back in ICU in March. I didn't realize how high it had gotten back then. Good news is blood pressure has been pretty good and the ECHO showed improvement. We are thrilled. Please pray that her kidneys will be okay and whatever it is will be reversible. Finally can feel excited about coming home because we are boarding soon and the doors will shut and they cannot call us back. Whew! Looking forward to seeing family and friends...just tear up thinking about it. To God Be The Glory!</span><br />
<span style="font-family: inherit;">Love, </span><br />
<span style="font-family: inherit;">Mom</span>KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com2tag:blogger.com,1999:blog-5009402787719253991.post-62746326537632728902014-10-24T10:23:00.003-04:002014-10-24T10:23:42.912-04:00Day 91All plans are still a go for coming home a week from today. This is getting more exciting the closer we get. Last week, I couldn't say that I was content in leaving, but this week I have become more restless about being here. It is time. The Lord is preparing us to leave. We rest in the peace God has given us and look forward to where He leads. There will be a lot to do from this end, but all with a fabulous goal on the other end. We celebrated how far we've come with Karly's doctor and nurse case manager. It has been one long journey. I know the journey won't end, but how we can rejoice in it. Karly is all smiles when we talk about her dreams and goals, her future! <br />
<br />
On a medical note, you all will be amazed at how awesome Karly looks. Like I said before, she looks well, so it is deceiving how fragile she is. Our guard is up. Please be on guard if you plan on being with her. SHE CANNOT be around you if you are sick or even have a cold. She hasn't felt this well for 5 years. She doesn't even remember what that felt like. She is walking in new territory. We have our appts in Indiana. Her BP has been better, but her Creatinine is still high. We are guessing that it is tacrolimus related, and the fact that she already had kidney disease just makes it worse. They will probably start weaning her from it in 3 months which is a bit on the early side. Please pray her body will withstand that process. Please pray that her kidneys will recover from the abuse of the drugs. We are headed back to the hospital today for an extra looksy and have some results decoded for us. Pray that these things will be normal or be returning to normal. We have been saying goodbye to some extra special people this week and next. It will be a weird yet great thing that we don't return for 3 months. Haven't done that in over 5 years either. Pray that she really does stay well enough for the next three months to keep us at home.<br />
<br />
I was reminded again today from the devotional that God has called me to walk with HIM. He wants me to blaze a trail for others who desire to live in HIS peaceful presence. He uses me in my weakness. 1 Timothy 1:12, "I thank Him who has given me strength, Christ Jesus our Lord, because he judged me faithful, appointing me to his service." I am still awed by this fact. Who am I that I can speak anything to others? All I can do is keep my eyes on Jesus and walk the path He shows me. If I am faithful, then I am useful in His service. Hebrews 10:23, " Let us hold fast the confession of our hope without wavering, for He who promised is faithful." Hebrews 11 talks about "by faith". We may never see the things we have hoped for, but we understand that God is faithful.<br />
Love,<br />
MomKJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-24045924640474198452014-10-20T16:12:00.002-04:002014-10-20T16:12:52.647-04:00Day 87<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9N0o0xpUmvvQ5YbQ3bnH2s31LbHraLEhZmYW71hgo9qWP-46ZA-3MERgqh87d1nMnBZ2IRO_vjQPH8w_rYfKk6eRxxZwFJcJE5JN28uSZOcg0vZ50b6l88KkaWty0qzsPh0T5WiqrkfAT/s1600/IMG_20141019_142119.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9N0o0xpUmvvQ5YbQ3bnH2s31LbHraLEhZmYW71hgo9qWP-46ZA-3MERgqh87d1nMnBZ2IRO_vjQPH8w_rYfKk6eRxxZwFJcJE5JN28uSZOcg0vZ50b6l88KkaWty0qzsPh0T5WiqrkfAT/s1600/IMG_20141019_142119.jpg" height="150" width="200" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid6chc2K8aisFdBl0SWqSpTGyLQZQD27WzMkhl8eOznr-j-jgcCYXnV97L0Dp1frCtBgSqp5WJ0U8mji9BD_Sh6La_it8tsBuUac5ZvYhoqSfXAOsWbNGSfopOALwYqkspCBHPhjcn3ePt/s1600/IMG_20141019_142305-SMILE.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid6chc2K8aisFdBl0SWqSpTGyLQZQD27WzMkhl8eOznr-j-jgcCYXnV97L0Dp1frCtBgSqp5WJ0U8mji9BD_Sh6La_it8tsBuUac5ZvYhoqSfXAOsWbNGSfopOALwYqkspCBHPhjcn3ePt/s1600/IMG_20141019_142305-SMILE.jpg" height="150" width="200" /></a>We spent a fabulous weekend in Luray, VA with Debbie, Hannah, Rachel and a couple of their friends. Deana and her friend, Dave, joined us on Saturday. We started at the Luray Zoo
home of the largest venemous snake collection on the East Coast. These
snakes were quite entertaining...not your normal coiled lumps. Konner, I
had to post the
tarantula for your benefit. I loved watching the Capuchin Monkeys. In
the evening, we thoroughly enjoyed a murder mystery
dinner at the Mimslyn Inn. Sunday, the kids enjoyed zip lining through
the woods. The final line started back in the woods and ended across the
large open space up to the tower. Karly said she faced two fears...the heights and the snakes.<br />
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Karly is doing very well, although, the kidney and heart issues are still present. They are checking for causes of some other issues she's having, but if these pan out, then the fix is easy. We have her kidney and heart appointments scheduled in Indiana. Her CR is hanging out at basically 2.0. Her BP was not too elevated today. Next week starts her 100th day work-up so that we can come home on the 31st which is Day 98. We are cautiously excited. Happy Birthday to my sweet boy Trent!!!! We will officially celebrate as a family soon!<br />
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God knows! As long as we stay focused on Him, we will stay tuned to our response through the Holy Spirits guidance. May you all be focused and in tune.<br />
Love,<br />
Mom<br />
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Weekend was awesome. Went to Gilley's on Saturday. We saw an interesting rendition of Godspell and enjoyed a yummy dinner. Sunday, we went to the movies and ate Uncle Ridge's famous grilled pork chops. Monday, we returned to our house whereupon it was requested I make homemade pizza. Zach and Karly went to their swing and salsa dance lessons while I enjoyed my Bible Study group via Skype.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlT9stfJO1I-JtMSYlaBVl1kgM4kXM4OWZUxHAbgOUMqNk-1YvaZHypoeoAYjn0RboTKJpOa7OZyaYo8ZZKAdh2_CgqG-7nsgNxQrSVQJ-00SpBroJe_0XBblWDloavVeF7KCPP5o4ZN71/s1600/IMG_20141014_204104.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlT9stfJO1I-JtMSYlaBVl1kgM4kXM4OWZUxHAbgOUMqNk-1YvaZHypoeoAYjn0RboTKJpOa7OZyaYo8ZZKAdh2_CgqG-7nsgNxQrSVQJ-00SpBroJe_0XBblWDloavVeF7KCPP5o4ZN71/s1600/IMG_20141014_204104.jpg" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkjrS4NQzOBM5x4iz9BYy_vuN7CrUooJOXmiV4gpPlkJON2RKWMGJO_EW6O4l4T_qzpJ5qUzNeEhEaevCLHZ-KhTtcTeyA17fKIAW6JkkOcdtjDdw51Qgk6ddOUg_ixkLcngV4lvWfpslp/s1600/IMG_20141014_204048.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkjrS4NQzOBM5x4iz9BYy_vuN7CrUooJOXmiV4gpPlkJON2RKWMGJO_EW6O4l4T_qzpJ5qUzNeEhEaevCLHZ-KhTtcTeyA17fKIAW6JkkOcdtjDdw51Qgk6ddOUg_ixkLcngV4lvWfpslp/s1600/IMG_20141014_204048.jpg" height="200" width="150" /></a>Tuesday was clinic day. I don't have lab results, but she is feeling and looking good. We have to remember how fragile she really is even though she looks marvelous. As each day leaves us we are thankful. The farther away from Day 1 we get, we are thankful yet again. Karly and I met another DOCK8 patient, a 10 yr. old girl. She had the cutest southern accent...so precious. We will try to visit them again tomorrow. We have booked a flight home and hold it out to God. We continue to be busy which makes the time here buzz by. We have clinic again tomorrow, then a shopping trip for Karly and I. The kiddos were just too cute to pass up this photo opportunity, but Zach managed to hide before I could get the pic. I said I was done, but he could sense me hanging out at the foot of the bed. I grabbed the blanket to catch his smiling face!<br />
"Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth!" Psalm 46:10<br />
Love,<br />
Mom<br />
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<br />KJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-31069237507899424902014-10-11T10:29:00.002-04:002014-10-11T10:29:49.083-04:00Day 79In exactly 3 weeks, we hit the 100 day mark! We were nervous about going forward with this transplant, but also knew without a doubt that it was God's timing to proceed. All we could do was trust in Him, keep our eyes and mind on Him, and let Him do all that is perfect and pleasing to Him. People often ask themselves "why me"? A friend I met out here who has survived multiple cancers and is now caring for her 25 yr old daughter in the midst of cancer from her deadly immune disease who is preparing for her bone marrow transplant next week, said why not me? I was watching Karly's story on youtube again this week. She initially asked "why me", but later realized that God will use her story for His good and for His glory. Sure, you can ask God, why me, and He may answer you now or you may get your answer much later, or never in your lifetime, but rest assured, He will not leave you or forsake you in your journey here on earth. The problem with the "why me" is the self-pity that keeps your eyes on yourself or your circumstance. The devotional the last 2 days has been reflecting on staying close to Jesus, your friend, your Lord, your Savior. Our journey has been uphill, downhill and all over the place and at times I think we do feel drained of energy, but fortunately those moments have been fleeting. We have chosen to grab hold of Jesus' hand and not let go. We have learned to trust our Lord and let Him control this journey. We have trained our mind which has been a process of learning. How do you do this? Renew your mind everyday with Bible reading and make Jesus your best friend. We have been shown what to do. All you need to do is seek Him and He will draw near. James 4:8, "Draw near to God, and He will draw near to you...." It is an action with a consequence. May all you actions reflect Christ!<br />
Love,<br />
MomKJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0tag:blogger.com,1999:blog-5009402787719253991.post-37895852118517252782014-10-06T16:24:00.003-04:002014-10-06T16:24:55.500-04:00Day 74Labs are a little out of whack today, but love that the BP is normal. Her CR hit another new high today. Her sodium and phosphorus are high. We will have to hold the lasix this week to see what the CR will do. Pray her BP doesn't rise as a result. We hope to get some answers later this week after the MRA of the Brain and Renal Arteries are performed. She had a couple weird blister-like lesions on her hands this weekend. The first one was resolving, then another one cropped up on a different hand. Don't know what or why, but probably related to molluscum. At least, it is easy to blame it on that. It doesn't bother us. We just look forward to what another day will bring.<br />
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I loved the Jesus Calling devotional today. "Be willing to follow wherever Christ leads." "You must walk by FAITH, not sight." Are you? I pray that you will walk where He leads and live keenly aware of His presence.<br />
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Love,<br />
MomKJKhttp://www.blogger.com/profile/04591627465894222390noreply@blogger.com0