Thursday, February 08, 2007


Wrong and Frightening...But Very, Very Real

Last Friday before we entered the world of details, the doctor at NIH mentioned "good news and not so good news."

I assume that we heard the bad news. As Friday progressed, however, I tried to brighten Steven's mood with the fact that there was "good news" that the doctor never really mentioned. Steven and I speculated about that unknown "good news". Of course our natural assumption was that all other tumors were stable and the rest of the MRI was unremarkable.


I asked the doctor that day for a copy of the radiology report. He refused my request...something to do with protocols, rules, and other excuses of secretive nature. The sweet nurse at neurosurgery, however, read my desperation in a recent email, and I now have both radiology reports in hand.

(One for the brain, one for the spine.)

The MRI of the brain mentions the cyst and related tumor. It also mentions the poky but present growth in the brain stem tumor. The radiology report also cites five tumors in the posterior fossa. That is the lower back part of the brain. The cerebellum. The brain stem. One extra tumor that I've never known about in that part of the brain.

The report on the spine also held surprises. The tumor at C1/C2 was again noted. There are, however, two more spinal tumors that have never been mentioned before. One at C5/C6 and one in the thoracic spine.

We know it's the nature of the disease. We know more tumors are to be expected. We know that these small benign tumors might takes years and years before they are large enough to create trouble. Maybe never. It just seems so much more gruesome when it's your child who is randomly producing these tumors at an alarming rate.

Have I mentioned "insidious" before?

So now I really need to know...
just what was the good news?


diary of a genetic defect said...

I can't see nay good news either but my dad had a similar prognosis and he's still here.
You're both (all of you in fact)very much in my thoughts and prayers.

Heather said...

I am so sorry to hear this. I am always thinking of Steven and your family. (((HUGS)))


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