Thursday, February 12, 2015

Day 202

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

"After reflecting on last year’s events, I learned something huge. I began to see how God’s plan is interwoven…with timing, transformation, and what I call divine appointments. To try to keep this as short as possible I will be skipping much of the story, but focusing on the interwoven points.
In January, my doctors became weary of my mysterious hypertension and began searching for the cause. We found Renal Artery Stenosis was causing this hypertension. This caused concern, but so much confusion as to how to treat it. As we were seeking advice from others outside of NIH, it created a new circle of doctors in Indiana who ultimately could focus on the kidneys and heart with the direction of NIH.  I was diagnosed with Congestive Heart Failure at the beginning of March…no one saw this coming! During this process, I was in school and involved with Campus Crusade for Christ. When I heard about the Spring Break Outreach trip to Panama City Beach, Florida, I had started praying about whether that was something I should join.  God was tugging on my heartstrings, and I knew I needed to go to Panama City Beach with Ball State Cru. This conference taught me about sharing God’s word, and the importance of drawing nearer to God. During that week, my Congestive Heart Failure worsened leaving me struggling to breath. NIH flew me directly from Florida to them and immediately into the ICU. The timing of when this happened was not by chance. (It just so happened that…) My mom’s boss was vacationing in Florida only a few miles away, so when I had no convenient way, he helped get needed medication to me while down there and transportation to the airport. I spent the rest of the month in the ICU. NIH knew that I needed to get back to the Indiana doctors for my heart and kidneys, but they had to stabilize me first. Finding the doctors in Indiana prior to this was not by chance.  As soon as I got in their care, my renal arteries (which were 90% blocked) were ballooned, and BP stabilized thereby giving my heart a chance to not work as hard. Another key point during my ICU stay at NIH was the introduction of a document called “Voicing my Choices.” This document gave me a say about my comfort, my care, and my funeral if it came to this. I’ll get back to this in a minute. In April, I was tired of my body failing, and I knew that this was only going to get worse and worse. So with more tugs on my heartstrings, I made the decision to proceed with the Haplo-Transplant. This all seemed like it was happening so fast.
I began to think about my family, my friends, and the possibility of meeting my Creator in Heaven. I had to prepare for the possibility of death, and I was brought to the situation of my older sister.  In preparation, I was in conversations with God. I was seeking His peace. At SERVE in June, during one of the evening “Experiences,” I was prayed for and felt encouraged. I found the peace that passes all understanding. The next week I was at NIH starting the pre-transplant qualifying tests. Again, the timing of prayer was not by chance. God had prepared me. My family had already set aside 2 weeks for a summer vacation meaning my brother, Tyler, had his time off from work which was God’s perfect timing for donating his bone marrow while I was starting chemo. On July 25, I had my life-saving first of its exact kind of transplant. This was the first Haplo-transplant for DOCK8 in the US. They call me a pioneer. Its success has paved the way for the next one in March. I have been blessed with my 14-yr relationship with NIH. This relationship is not by chance. As they have watched me grow up and know who I am and what I believe, my doctors trust me to be a spokesperson for DOCK8; and in a way God has made me an ambassador of hope for my fellow DOCK8 family. I get to meet DOCK8 patients and share encouragement, hope, God’s faithfulness, and my journey.  In reflection of this, I was thinking about how my sister Kelsey and I shared this DOCK8 disease. It was comforting for us to share this disease together. When Kelsey lost her DOCK8 battle, I found this new emptiness. I knew that I wanted to meet others with DOCK8. This began a new path of reaching out and finding others with DOCK8. A path God has blessed. My mom and I had an unexpected trip to NIH last Thursday evening to Friday evening. I didn’t want to go. It was an inconvenience. This short 24-hr trip was a Godsend though. I got a skin biopsy, then I was blessed by spending the rest of the day talking with three DOCK8 patients that I found out were there. I am the only DOCK8 person whom each of them has met. One will be the second Haplo-transplant for DOCK8 in March. She was so happy to meet me and ask questions, as I was elated to answer her questions and meet her. What was most exciting was talking with the family from Iran. We had briefly stuck our heads in earlier this month to say, “Hi,” but without a translator it was tough, but they remembered us. God’s timing was yet again perfect, for a translator of Farsi had conveniently met us at the door of the Iranian girl.  We answered so many questions. They were so open. We took photos, shared emails, and developed relationships. This was amazing!
 Back to Voicing My Choices, this document has led to an article in the New York Times. It has also led to my sharing more about this document to other DOCK8 patients. In order for the writer of the story to get a grip on our family she watched the story I did at Union Chapel October 13, 2013. She shared this with her editor and team. They want to expand the story, so another story is in the making this week as a videographer comes from NY to Muncie to follow us around for 5 days. God’s divine appointments…aren’t they miraculous? His plan is an extravagant weave which interlaces my life in ways I can’t comprehend. By honoring God in all things, He makes the impossible possible! Where does this lead me next? I cannot wait to see. Luke 1:37 says, “For with God, nothing shall be impossible.” I truly believe that!"