Day 17 pm

Things can change quickly. This afternoon her rash was worse, and just as I was noticing it, in walks the doctor I needed, her transplant dermatologist. It has been biopsied. I noticed on her labs this morning that a virus we watch for has appeared in the labs. It is the dreaded HHV6 which in Kelsey manifested as the brain virus. At this point, we cannot be worried. It is often seen after transplants. What to do about it is the problem. Because we don't have a context for this in a DOCK8 haplo, we look at what has happened in other transplants. In one other DOCK8(besides Kelsey) it showed up. They started the big guns viral medication until they could say that it wasn't in the CSF. This is exactly what we are doing. They tapped her Ommaya Port(the one in her head) to pull out the CSF. We are praying for a great big zero virus found. We should know this in 2 days. The down side to this drug is that it will lower her counts. Pray that her counts remain strong and grow in number rather than diminish. We need her Lymphocytes to increase at just the perfect speed...too slow not enough to fight HHV6 and too fast an increase in GVHD. God knows.

At first, I couldn't believe what I was seeing. I remained calm, but had a nervous feeling. I emailed our Dr and asked what I needed to. It took her awhile to get back to me, because the team had to discuss the best possible way to proceed. Karly already had an emotionally taxing afternoon, so I didn't tell her. Of course what was difficult was to take Kelsey out of the equation for them and me. When she came in to see me, they had a plan. I had to let them know that they shouldn't proceed with anything because of my concerns, but rather based on the knowledge we currently know and what we still need to know. The Dr told Karly. Karly and I prayed about everything, and all we can do is keep trusting God. "Pray about everything; Worry about nothing." Phillipians 4:6.

Since the tapping of her Ommaya, she has been nauseous and that is with 2 nausea drugs on board. She ate a bowl of soup and threw it all up. We'll see if her medications stay done. Pray they will. We don't want this to set us back. Things have been going so awesome...let's keep it up!

Love,
Mom