If I never again have a physician call me directly to tell me they’ve found something scary in my child’s brain, I will be a very happy person. I was driving to an advisory council meeting for our local robotics group when Dr. Groves called to tell me they’d found something in Christopher’s MRI after uploading it into the Johns Hopkins system. She apologized for missing it (to be fair, so had Inova Fairfax Radiology, and all three physicians who’d also looked at the MRI), but there was a small arteriovenous malformation (AVM) at the top of Christopher’s brain. She told me not to Google it, because there were all kinds of scary stories on the internet. She also told me it would require he see a different kind of neurosurgeon, a pediatric vascular neurosurgeon, and so she was referring him to Dr. Edward Ahn, also part of the group at Johns Hopkins. She warned me that Dr. Ahn would probably want to do a cerebral angiogram since the MRI barely shows the existence of the AVM. I parked my car, made it through my meeting, and then fell apart. I called my best friend, where I couldn’t even get out the words at first, and spoke to him in the dark, in the rain (it was a very Enlightenment setting), for at least 30 minutes before deciding I was safe to drive to pick up my oldest from swim team.
That night, I really wanted off the train. I wasn’t sure how I was going to move forward with a second scary diagnosis, I’d only just wrapped my head around the fact that he might need skull-base surgery for the Chiari. If I could have hauled us all off at the Yekaterinburg station, I would have. But Christopher has two birth defects living inside his skull, I couldn’t very well just take him home and pretend that life was normal and I didn’t have a child with steadily progressive headaches. So instead, I prepared myself for making every stop on the Trans-Siberian Railway, as it was now obvious we wouldn’t get to skip any stops by taking an express route.
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