6/1/19 normal normal normal

Today is my birthday. I spent the afternoon at my parents’ house eating steak. Cap, to be precise. This is one small and particular part of a ribeye that I happen to love… and only my dad would arrange for me to have this for dinner. That’s after my mom helped my daughters to create incredible homemade presents for me. I am a very lucky girl. As I sit here, typing in my new flamingo pants (compliments of my bro & Jen) I think back on my birthday last year. It was full of blessings… Reese had engrafted and she had beat VOD. We were supposed to be discharged in five days. My whole family was together again, in San Francisco. But, I remember the question. As I lay in the hospital bed next to her, watching her drift off to sleep, my mind wandered to this. Why isn’t she eating? I knew that her appetite shouldn’t be excellent, but it had fallen off even more, and she wouldn’t eat my birthday cake. A couple days later, we would learn that anorexia (defined as lack or loss of appetite for food (as a medical condition)) is one of the first signs of gut gvhd. And so our battle with aGVHD began.

Today Reese joined me for steak (three helpings), birthday cake, and giggles and joy galore. I am so proud of my girls and so blessed to just, be. With them. There is nothing better.

The reason for my post: Reese’s biopsy results are back. You might recall that the preliminary results (how it looked) for her lower GI scope was normal. There was some curiosity about her upper scope. I would like to share her biopsy results below.
normal
normal
normal
normal
normal
normal
normal

God is Good! Mary, Mother of God, you held my hand. Complete healing. I am not a passive person of faith, I traveled a road. A road that can only be found through God and doing my best and understanding the path that He has laid out. This path lead me to UCSF. I don’t think I explain it well, especially in text, but this is what got me through. Trust, faith, and knowing that it was my duty to do everything in my meager power to help cure my child.

And God bless our brilliant doctors and nurses. They are using their gifts to save children’s lives everyday. The gift, the most incredible knowledge and drive for good. My family is so fortunate for the care Reese has received. Today I am sending the greatest amount of love and gratitude across the country to UCSF, to the incredible minds who cured my baby. And I thank the doctors at Lurie who have received Reese with open arms and support her through the next legs of this journey.

What is next? Peeling off more immunosuppression. This is an art, a careful dance. Onward!

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