Sophie declined VERY quickly after my last blog-post. So much happened that I couldn’t even keep everyone updated. We had multiple visits to the UVA hospital and daily communication with her neuro-oncology team at Children’s for almost a week- leading up to me just deciding to drive 3 hours to DC and have them look at her themselves. She ended up getting admitted to the neurology floor for overnight care and monitoring. She was discharged the next day with heavy medications to control brain swelling and hopefully prevent a need for a shunt to be surgically placed and to help her with her nighttime and morning headaches that were so extreme that even with round-the-clock tylenol she was clutching her head and crying. Luckily the meds worked well and fast. She’s been doing much better these past 5 days back home in Charlottesville- only 2 vomitting episodes in that time period and no headaches. She is however incredibly irritable and cranky and tired due to the high-dose steroids she’s now on. It’s hard to get a giggle or a smile.
As scary and risky as a brain surgery is, I can’t believe we are actually looking forward to it. Her tumor is simply too large to respond to any treatment and this is the only way she stands a chance. We can’t wait to hear good news that the surgeon has reduced the size enough to make it weak in the face of the next rounds of chemo. We can deal with the surgical consequences as long as we have our baby stay with us as long as possible. She goes in tomorrow at 7:30am. Please start praying for her surgical team and our family now- it feels like the day before a big test or a big race x10 for us and we could use a lot of support! Thank you!!!
I’ll be posting photos from our awesome fundraiser some time today or tomorrow, but wanted to get this blogpost up today in the 24 hours before surgery.