Day 26

I'm still excited to be able to report that things are going well. Karly is asked everyday, "How's it going?" She reports the way it really is with how crummy she feels, yet she has better days than some. I have to say she is doing well for a transplant. Her HHV6 report is still low positive, but it is the lowest number to date. They will not repeat another Ommaya tap this week..and hopefully not next week either...maybe not at all if we don't see any changes. That's good, because it is pretty sore to touch. She is still continuing to build up neutrophils and platelets. The one thing she doesn't have are T-Lymphocytes, because these are the ones we zapped with post-transplant Cytoxin to help control GVHD. They are the ones responsible for fighting the HHV6, CMV, and EBV. These are the main viruses we pray against. At this point she has been only positive for the HHV6. We are remaining encouraged by her progress and hopeful for her future. I am focusing only on what we live each day and thankful at the end of the day. Her room is a reminder of how much you all love her, and great our Father's love is for her.

We were privileged to meet another DOCK8 family today from California. It is fun for me to meet our DOCK8 family, so we can encourage and share with each other. DOCK8 varies a lot, but we know that to transplant younger is better and that this disease does progress. Pray for these families to sense when the time is right in their lives to make this tough decision.

Karly had art therapy today. I love that she can enjoy these projects from time to time. It takes her mind away from how she is feeling. I painted her toenails Seafoam thanks to the Gilleys. She was feeling homesick yesterday. We do our best around here, but there is no replacement for the joy we find in being all together being goofy and laughing. We are looking forward to the clan arriving in 9 days. There is talk that she will be able to stay at the Inn this weekend as a test run for going outpatient. Hoping that it happens, and it goes well. It should be quite restful for her not having all the interruptions all day and all night. Poor Zach, this schedule will be challenging since he does the night shift and this weekend will be day, then back to night. He's young and will roll with it. You all could pray for Zach as he has made the decision to take this semester off from college. I think it is a wise decision. Pray the school is accepting and goes beyond measure to help him return with no repercussions. HE is helping Karly immensely. Neither of them say they could do this without the other. I am very thankful for his help, and I certainly sleep much easier knowing he is with her.

God is in control! We claim this everyday. He knows the plan He has for her. Thank you Jesus!
Love,
Mom