Sunday, September 14, 2014

Day 50(September 12)

Friday, Sept.12 was Day 50...the halfway point of coming home. Of course, this isn't any kind of magic number, just a guess...could be sooner or later...but at the rate we are going maybe sooner.
Sept 11(Scientific Day) and Sept 12(Survivorship Day) celebrated "Twenty years of Allogeneic Stem Cell and Bone Marrow Transplantation at NIH" After Karly's appointments Friday morning, we made it to the end of the caregiver talk, but just in time for the Survivorship Panel. They had 5 transplant survivors share their stories...each one for a different disease. I loved the fact that 3 of the 5 shared just how important their Christian Faith was in the process. That stood out the most. The first transplanted patient here at NIH, 21 yrs. ago, spoke. He didn't speak English, but was translated. He didn't speak about his disease, but rather started out with a verse from John 5:5-15. Wow! He related how Bethesda NIH was his Bethesda and how Jesus used this place to heal him. He was extremely thankful as was the many survivors that were present. As Karly gathered for the Survivorship Photo, she was told she was the baby one of the group...only 50 days. She was surrounded by 4 yrs, 6 yrs, and 10 yrs. I keep saying as a believer there is such power in your story. You can relate and learn from the stories living out their FAITH because those stories are the ones that have living power. At the reception following the panel discussion, the survivors signed a tree that was made for the celebration by a couple of the recreational therapists. Can you find Karly 2014? I love God's timing. The celebration was just what we needed at the end of that week.

Friday's labs were about the same as the rest of the week. Creatinine ranging from 1.98 to over 2  back to 1.96...these are mostly the same. We were mostly excited that it didn't go higher. After the liter of fluids on Wed, her heart number was higher on Friday. We hope that this was just a bump from the fluid. We will know more on Monday. She overall feels okay...doesn't notice a huge change, but the molluscum seem to be lessening around her eyes and on her face. We can see the whites of her eyes again. The Skin GVHD seems to be the biggest challenge for her as that is what makes her feel uncomfortable...well so does the gut, but not as much as it comes and goes. All of these are the things that keep us here. These are the things that need to stabilize and fall into a we know the cause and when they see the labs they have an idea of what is happening at home. Anyway, we are thankful and grateful for all that is happening...for the prayers..for the community that sustains us...for the car...for our housing...for the opportunities...for the life we have. May you all be thankful every moment of everyday. It is a choice!

 For although they knew God, they neither glorified him as God nor gave thanks to him, but their thinking became futile and their foolish hearts were darkened. Romans 1:21 

Devote yourselves to prayer, being watchful and thankful. Colossians 4:2

Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. Colossians 3:15

 Give thanks in all circumstances; for this is God's will for you in Christ Jesus. 1 Thessalonians 5:18

Therefore, since we are receiving a kingdom that cannot be shaken, let us be thankful, and so worship God acceptably with reverence and awe. Hebrews 12:28

So many more to choose from....




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