Heartache

I’ve written and rewritten these first few sentences at least 10 times. It seems there’s no way to say this. Sophie is currently in the operating room undergoing open brain surgery to biopsy a brain stem tumor we just discovered 6 days ago.  MRIs done at UVA and here at Children’s National Medical Center in DC show an atypical tumor so there is no standard treatment she can start right away. Her symptoms began after the first week of novemeber with occasional facial asymmetry while laughing and crying. We thought this was a toddler behavior at first but after a week of taking photos and watching closely, we were able to determine the assymmetry was consistently one-sided.  So we made a doctor appt thinking maybe we were seeing a facial nerve irritation like Bells Palsy (innocuous) but certainly nothing serious. After all, she was still healthy, riding her bike, sleeping and eating well, etc. Just before Thanksgiving Day we thought maybe there was a new symptom: the increased squirming, swinging around on our legs, getting underfoot, and falling down stuff we thought she was learning from Lucas (they did it exactly the same way!) was more than a mimicked behavior. Maybe she was a little off – balance? Thinking the face assymmetry might be worsening and affecting her vision, we called her pediatrician immediately upon returning to Charolottesville and were seen that day. By then Sophie was holding her head sidebent to the the right to correct for her double vision. The doctor was thinking Lyme’s disease or some sort of infection. We did blood tests and waited for results. But the next day I was feeling some sort of mama instinct that made me spring into action. I called the doctor and the lab multiple times, spoke with nurses and fought the bureaucracy trying to get the blood test results that would surely be done by now.  I called my mom and she urged me to take Sophie to the ER- which we did. And now here we are. We are all so exhausted from all the tests, scans, MRIs, beeps, wires, alarms, medications, visits from her 15-person care team, extreme worry and stress and lack of fresh air and healthy food. We are more than grateful for our friends and family nearby who have been taking care of us, feeding us, bringing us necessary hugs and chocolate (and stealth wine! In a hospital room!), entertaining Lucas, etc etc. This blog will be our control-center for news and updates once we are discharged from Children’s Hospital (no internet connection). So check back here for the latest. Please pray for, send good thoughts to and focus healing energy on Sophie during this scary time.
IMG_6535smWe were so happy that Meemom flew in all the way from Arizona. Her presence was an immense emotional help.SAMSUNG This was our view upon arriving at Children’s National Medical Center: It’s top 10 for Children’s Oncology and our doctor is the top 1% in the country in his field. Feel so lucky to live nearby…IMG_6526sm…and to have family to stay with and take care of us:

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