Friday, January 8, 2010

We had some neat visitors on Tuesday; many were the doctors who worked in the laboratory on the Dock 8 discovery. For the past year or so, they have been trying to activate Kelsey's T-cells with no success. On December 18, they were activated. This is very exciting news! They watched her T-cells move and replicate for 5 days. Then the cells started dying. This is OK though because this will be the next thing they work on. You can only take a second step after the first has been taken. We also met a man from Oxford who created the Dock 8 knock-out mouse. These mice are a version of Kelsey and Karly. Through these continued studies, more will be discovered about how to help the girls. Of course, we are still hoping for the stem cell transplant for both girls, but until that happens, they will continue using the girls to help conquer Dock 8. Praise the Lord...Tyler doesn't have Dock 8 nor is he a carrier. Another group of doctors in the Middle East have found 19 to have Dock 8. This means that more studies will be conducted over there also. That makes a total of 27 in the world with Dock 8. Tuesday was a good day for news. Karly has continued with her TPN this week. She was able to take a chair shower on Thursday. She eats small amounts of food in the evening. I was asking what foods she would like to eat. She replied, "I want an Ivanhoe's breaded tenderloin, tater tots, and strawberry lemonade." When the doctors came in I relayed this information to them. To our surprise, none knew what a breaded tenderloin was nor can you buy them. The nutritionist was ordering Karly the tater tots to make in the special kitchen. One of our nurse practitioner's, Vickie, brought in a blender, lemonade, and frozen strawberries. We made strawberry lemonades last night! People here are so great to us. She asks a lot for me to cook, but I don't have my herbs, a crock pot, or the time to cook for her. If I go cook, it takes a long time that I have to be away from her. I tell her to hang on and when she becomes an outpatient I will be able to cook. She finished the systemic chemo on Tuesday for cycle 3. She still gets the Central Nervous System(CNS) chemo every Monday. Since NCI(National Cancer Institute doctors) had increased her chemo amounts this cycle, we will see if it drops her counts like they wanted it to. Her fevers have been gone for about 1 week and her head pain is less. They had been scanning her last week to look for hidden infections. What they discovered was an unusual looking spleen. The most logical talk right now is that it had lymphoma also, and it is responding like the kidney. Praise the Lord!

Kelsey's liver tests have been on the decrease. They will not give her the study drug until it plateaus for 3 days. Since her lungs are responding for the treatment of the Histoplasmosis and the pneumonia is finally shrinking, they have let her go outpatient. She is staying with me at the Children's Inn. Everyone is quite anxious for her to resume the study drug. It was WORKING! She ought to be returning to Muncie some time next week.

Pray for ways that Karly can be more like Jesus. She doesn't often FEEL like being civil. She did watch the Oneighty Converge Service on Wednesday night. She did sing along, and it was a great message...less of self, more of Jesus. I pray for more times like that. Thanks Sara for Skyping. It was so worth it on our end.

I ditto dad's message about the Sherpa's. We couldn't be climbing any mountain without them. Thanks for being THAT person.

1 comment:

  1. I can't even imagine what you all are going through. It seems so far removed, yet I think about all of you quite often. Please let me know what I can do that may help if anything. I enjoy reading the updates and love the pictures.