Tuesday, February 2, 2016

5 years ago...Kelsey's Homegoing

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

Kelsey lived life exuberantly until her death on February 2, 2011. She lived with an undiagnosed primary immunodeficiency disease until 2009 when it was finally diagnosed at the National Institutes of Health as Dock8 Immunodeficiency Syndrome. Having spent 10 years in a research protocol at the National Institutes of Allergy and Infectious Disease, she gave more blood, skin, and cells than anyone with this disease leading to its discovery. Kelsey and her sister Karly were among the first 11 diagnosed with DOCK8 as stated in the New England Medical Journal September 23, 2009.
Her goal was to fight this disease in a rip-roaring manner in hopes of finding a cure for her younger sister, Karly, who has the same disease, and others fighting the same battle. With the knowledge at hand, she moved forward with a Double Cord Blood Stem Cell Transplant Fall 2010. It was the first transplant of its kind for DOCK8 in the world. She developed many complications which ultimately lead to her death. She fought valiantly and gave her body to the Institute to further research in this area. We never found a match for Karly, so the NIH continued to work on Karly's behalf to find an alternative for her and the other DOCK8 patients with no match. Karly became the first Haplo-Bone Marrow Transplant for DOCK8 on this side of the world on July 25, 2014. It was textbook if a textbook had already been written. Her case was writing the textbook. Other Haplo Transplants have occurred since then. We continue to educate people about the National Donor Marrow Program and the ease to join the registry. Our story is told more fully on www.kjkdancingthroughtherain.blogspot.com and www.dock8connection.org.

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

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

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

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

Tyler's memories of Kelsey:She taught me to like rock and not be afraid of people with tatoos. I loved hanging out in her apartment when we were in college. P.O.D- Goodbye for Now. https://youtu.be/plGETDmXw5g
This song reminds me of Kels. Tyler was 20 when Kelsey went home.

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

18 months post-transplant

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

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

My thoughts on 1 Corinthians 12...
 SO I was just reading these verses in 1 Corinthians and felt inspired to share my thoughts...
Unity and Diversity in the Body
12 Just as a body, though one, has many parts, but all its many parts form one body, so it is with Christ. 13 For we were all baptized by[c] one Spirit so as to form one body—whether Jews or Gentiles, slave or free—and we were all given the one Spirit to drink. 14 Even so the body is not made up of one part but of many.
15 Now if the foot should say, “Because I am not a hand, I do not belong to the body,” it would not for that reason stop being part of the body. 16 And if the ear should say, “Because I am not an eye, I do not belong to the body,” it would not for that reason stop being part of the body. 17 If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? 18 But in fact God has placed the parts in the body, every one of them, just as he wanted them to be. 19 If they were all one part, where would the body be? 20 As it is, there are many parts, but one body.
21 The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” 22 On the contrary, those parts of the body that seem to be weaker are indispensable, 23 and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, 24 while our presentable parts need no special treatment. But God has put the body together, giving greater honor to the parts that lacked it, 25 so that there should be no division in the body, but that its parts should have equal concern for each other. 26 If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.
27 Now you are the body of Christ, and each one of you is a part of it. 28 And God has placed in the church first of all apostles, second prophets, third teachers, then miracles, then gifts of healing, of helping, of guidance, and of different kinds of tongues. 29 Are all apostles? Are all prophets? Are all teachers? Do all work miracles? 30 Do all have gifts of healing? Do all speak in tongues[d]? Do all interpret? 31 Now eagerly desire the greater gifts.
1 Corinthians 12:12-31

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