Staying Informed

"We don't scare."

This past Thursday and Friday, besides being my little girl's big birthday extravaganza, was Steven's six month MRI and clinic visit at the NIH. After traipsing through phlebotomy and radiology, we met with Dr. S in the clinic.

"For the most part, the disease is stable," she reported. "However, there is some obvious growth in the brainstem tumor."

I asked if the tumor was being compared to MRIs dated from the beginning of this journey or if the tumor had grown significantly since his last appointment in August.

"Well, obviously it's grown over the years, but we're also noting visible growth since August. The measurements also show growth since August."

I sat for a moment, trying to digest this news and deciding if I should file it in my brain under "important" or "interesting". Dr. S took my silence for something else.

"I'm not trying to scare you."

"We don't scare."

The good doctor asked the routine questions of symptoms. Steven's only probable symptom at this time is the regular yet odd hiccups that he experiences. This symptom is not to be worried about too much, as it simply indicates that this dynamic little tumor might sometimes be moving just a bit and pressing on a very small area of the medulla/fourth ventricle that stimulates hiccups.

Dr. S then asked about shunts, as she commented that Steven's ventricles are nice and neat, small and perfect.

Steven has no shunt.

"Hmm...", she replied. "Sometimes when the ventricles are small and the tumor sits in this tiny area at the bottom of the 4th ventricle, you can develop a case of sudden hydrocephalus."

"Without a cyst?" I asked.

"Yes. These tumors can have a tendency to 'move' in small ways, and sometimes it can get stuck and block the ventricle"

I had to sit and ponder this statement, also, because I'd never heard this information before. Again, my silence gave the doctor reason for concern.

"Really, I'm not trying to scare you."

"Really, we don't scare."

Building 10, the NIH

I can run through the laundry list of emotions that this disease brings to me...

frustration...
admiration...
anger...
determination...
jealousy...
sympathy...
confusion...
irritation...
sadness...
strength...

But We Don't Scare!

Live Brave!