Update Wednesday, October 1

​Our girl is showing us every ounce of her fierce little (opinionated) spirit. She does not like this one bit. 

Days are full of ups and downs. One moment she’s laughing and playing play-do, the next she’s sound asleep mid-sentence from sheer exhaustion. Monday night, EvanMarie was moved from the PICU to the hematology-oncology floor at TCH. Of course she eyed all the new nurses with her signature mean mug, the same eyebrows so many of you know. If you know her, you know she has always made every grown up work for her trust. Once she decided they were all worthy, she proudly hopped in the wagon and lit up the whole floor with her dimply smile and oddly mature for her age verbosity. And like any determined two-year-old, she has also made it very clear that she does not like taking her medicine (a point she repeats loudly and often).

Tuesday, doctors confirmed our worst fear, she has been diagnosed with high-risk neuroblastoma. The bad kind. It’s aggressive and fast. Our hearts are broken, but we are not at all without hope. So far, there have been no complications with the chemotherapy. On Monday, she will get another CT scan to see if the tumor is shrinking. Pray for a miracle y'all. 

We are deeply grateful to be here in Houston, surrounded by world-class doctors we trust. And more than ever, we trust God’s plan for our daughter and for our family. We already see Him at work in so many ways. it really sucks, but God is in all the suck. Thank you to those how have passed our story along to prayer groups, religious orders, and folks on pilgrimages. 

God hears our prayers! He can’t mute us. 

A few specific prayer requests: please pray that the chemo is working, that we see signs of progress on Monday, and that EvanMarie can adjust to this new daily routine of medicine and generally a bunch of hard things. 

Thank you dear family for every prayer, text message, and act of love. We truly feel them carrying us through.