One of the things on my mind is seeing Kelsey again. I long for it, so I can hold her, climb into bed with her, and just finish conversations we've had. I had a dream 3 nights ago, and she was in it. I cannot say anything in particular about it except it was peaceful and fulfilling. I wish it would come again. Another thing on my mind is Karly. We have told her countless times that she is not Kelsey. Her outcome is not based on Kelsey's. This is still true. During her appointment, the doctors found the first patch of virus(like Kelsey's) on her skin. I know that God is watching over us. Even the fact that the doctor found this patch was certainly a God moment. It just came to her to check Karly out more thoroughly. I know this is one thing they have learned from studying Kelsey and other Dock 8 patients. Each visit, the dermatologist will be cutting off a bit of the virus. This came as a shock to her and me also. It became a realization that they are more alike than we think. Kelsey didn't outwardly show much of the disease until she was in college. She may have had some patches that I was unaware of before that which is another thing I would ask her. Anyway, Karly would have certainly been talking with Kelsey about this. This was one of the things that made the visit tough. The person who knew best about this type of thing was gone. She will learn how to deal with this in a different way. It will take time. Karly's breathing was the worst it has been in a long while. Fortunately, the chest CT looked good. She had all the cancer CT's as well, and they all looked good. Her WBC count was a bit low, but it could just mean she has a virus(which she does). Everything else was looking good. Her sinuses were gunky, so she is taking an additional antibiotic. We will continue to travel to NIH every 3 weeks for treatment. Let me tell you that those 3 weeks go by very quickly. Anyway, another things I wanted to share about was how God has been blessing us. Thanks to some of my Facebook friends who posted The Star Press article about Divine Designs holding an essay contest to be Cinderella for a Day. I encouraged Karly to share her story. We know there is power in a story. She shared about how her first prom was right after she came home from 5 months of cancer treatments...no hair, no coordination, skinny as a rail, weak, not quite all a girl dreams about for her first prom. She shared about this prom being on the heals of her sister's death. Anyway, there we were at NIH, just had a tough day at the hospital, at a grocery store shopping for Karly food when she gets a phone call. It was Tina from Divine Designs telling her that she won the contest. That was very exciting, amazing, and just like God. The next day she had another hard day with the cutting off of the virus. She did an amazing job. Then on Saturday was the Gala. So the tough stuff was sandwiched with amazing experiences and good news. God is good all the time. Even if we never had any good news, we can still say God is good. But thank you Jesus, that you are supplying those smiling times. Being the contest winner became more real to Karly when we went to Saturdays Bridal and Prom shop last week, enjoyed trying on those beautiful gowns, and found the one that makes your mouth drop. When she tried on "the" dress, she felt like Cinderella. We finally met Tina this week and many of her co-workers. She is truly going to make this a prom Karly will never forget. I hope to share more often some more of the truths we live, adversities we face, the new journey God is preparing for us, and of course His never-ending love for us and you. Thank you for praying for us. Oh yes, by the way, there was one 24-hour period that 3 friends shared with me how God had them pray for me. I really don't know why, as is the norm for me these days, but I do know that God is leading our path. Tracy shared with me the same type of story. He was having a bad missing Kelsey week, and one of God's people shared with him the same thing...to pray for him. We don't know much, but we do know God is faithful, loving, and preparing us for His kingdom. We are all really close to Heaven whether we choose to believe that or not. Seek Him and you will find Him.
Monday, April 18, 2011
Sunday, April 3, 2011
Yesterday marked 2 months since Kelsey went to "Dance with Jesus". It seemed fitting that Karly and I each wore "Kelsey belongings" to the Gala yesterday. I wore Kelsey's prom tiara. Karly wore her prom dress and earrings. She is in everything we do, wherever we are. Karly commented on facebook how empty the halls are here without her "partner in crime". It certainly is different. It impacted her a bit harder this visit than last. Even though Karly looks great, the disease is progressing, and this became more real at this visit. So it starts some tougher things than she may be used too. Don't get me wrong. She is extremely tough. She was Kelsey's hero as she battled her Stage 4 Burkitt's Lymphoma. Nobody wants to endure pain and doing the unknown, so it makes it tougher for her to relive those feelings. She doesn't have her Kelsey mentor around to soften the blow and get the best advice possible. That certainly seems long ago; yet it is not forgotten. It was an amazing journey for our family. One that has changed us forever. God has been faithful throughout. We've had some emotional days. We have met some new faces that hopefully I will get to share about in the future as things progress in that relationship. The Gala was a time of celebrating the supporters of the Inn, what their support does for the kids that stay in the Inn, and it raised over $675,000 this year! She did an awesome job representing the Inn kids. There was a special performance by one of the longest going Inn kids(she's 24) and her boyfriend she met at NIH with the same disease. As a result of their disease, singing and note holding became part of her therapy. For him, it was the saxophone. So, together they performed " To Dream the Impossible Dream". They did an outstanding job. It brought me to tears on many levels. We dreamed of Kelsey's life on earth, but never as being impossible. It was awesome to see them living in spite of their illness. It was special to be at the Gala with pieces of Kelsey everywhere. It was 2 months since her death on earth, but living in God's presence. It was amazing to see Karly shine that night. Anyway, the night was wonderfully memorable. The Vice Presidential Suite was donated to us for the evening, so that made us feel pretty special. The evening was more special when cousin Deana and Debbie got to join us for dinner and the rest of the evening. Deana and Karly are always so spunky and have so much fun together. Dancing was a highlight for us, but I think everyone enjoyed it as much as them just by watching them together. As our time here is almost over this visit, there will be more reflection, but as always we have been supported, encouraged, and loved. Our hearts remain thankful and grateful and loving back to all of you. God Bless!