Saturday, August 19, 2006

...And We're Home!

We spent a total of 28 hours in the NIH/DC area. In that short time, Steven

jumped on the metro

and rode the trains many times,

visited yet another university

and ate dinner in Chinatown.

We also,of course, spent some time in phlebotomy, diagnostic radiology, and neurosurgery.

Steven was poked and prodded through the regimin of neurological testing by a new face, nurse practioner Kelley. More questions were asked about morning headaches (no), morning nausea or vomiting (no), or frequent hiccups (yes). Then discussion of the tumors began.

Ms. Kelley told us that she looked at the MRI films and noted growth in the larger cerebellum and the brainstem tumors. The growth seen is the typical slow growth of hemangioblastomas. Unless accompanied by a cyst or significantly worse symptoms, we just watched the tumors grow. The small cerebellar tumors are stable.

I asked about the spine. "Nothing in the spine," was Ms. Kelley's proclomation.


I'm very sure that the Drs. at the last two NIH visits saw a tumor in the C1-C2 range. In fact, I'm definite about that fact because the first mention of this spinal tumor last August was one of those moments that took my breath away.

And then I started having these these funny thoughts...Steven is invited to attend the clinic at NIH to participate in a very specific study. The study looks at tumor growth in relation to different levels of certain hormones in the blood. His numbers are added to other data that is calculated, graphed, and analyzed.

Can you imagine how his little spine miracle going to mess up those numbers? Can you see the analyst scratching his head, because hemangioblastomas never just disappear? Can you imagine that graph!

And just when I was starting to relish that we will have clinic visits with no new tumors reported...and just when I was preparing myself to accept possible new tumors and tumor I have to figure out how to process vanishing tumors!

(Yes, I do believe it's still there...)

1 comment:

diary of a genetic defect said...

I had a brain tumour disappear. It was on one scan and not on the next. They (the doctors) didn’t make a fuss. It was only when it had gone that I was able to cope with having had it. I fell apart for a day or two. Today I have to try and cope with the ones I get while they are here. But I do believe they can come and go.
Keep strong.


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