6/11/18 Day +40 Highest Dose Steroids Added

GVHD is a bear and it has it’s claws around Reese right now.
Last week on Monday they started her on a steroid dose of 1. This is considered a half dose, because they thought her GVHD was pretty mild and they didn’t want to flare her CMV reactivation, among other things. As the week went on, they determined the severity of the GVHD was worth the risks of added steroids. Wednesday they increased to 1.5, and on Friday they increased to 2 (the max dose.) Reese needs to respond by Wednesday. We do not want a situation where she is steroid refractory to GVHD. This is why we are holding our breath, watching her symptoms minute to minute, praying and offering all we have for improvement.
I am going to explain BMT, reminiscent of how it was explained to me by a nurse today. Basically, to save Reese’s life from JMML, we took away what keeps her alive. Now, the doctors are trying to put her back together again. They are trying to save her life, over and over, because what was done to initially save her life is now causing problems that are trying to take it. VOD tried to take her life. The doctors saved her. Now GVHD is trying to take her life. And the doctors are working to save her. By the end of this week, they will save her life for the third time. And that is BMT.
Are we seeing any improvement by right now, Monday night? Believe me… I am grasping for ANYTHING. I would say, yes. Nothing confirmed, but little hints. My sweet girl is in constant pain, there has been no break there. But a few hints of better. Tomorrow is a new day and tonight is a new night. She has been up all night for seven nights now. Hopefully, tonight will show her some relief. She has to start to show signs of getting better. Reese is strong and she will.
Pictured: Uncle Jos & Jen showed up today. Reinforcements to bring new smiles. They are the first in a long string of “helpers” who have booked flights to SF, to help my little girl get better. Parts of my village. My village is so extensive, there are helpers doing helping things everywhere. I am so grateful and blessed.

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