Monday November 28, 2011

This should be the beginning of a Temodar week, but this course that we were so sure we were going to be on through next March has taken a detour.  Shannon has begun presenting some new symptoms and the first course of action is to start her on the steroids again.  Shannon is mad as hell about what she knows this will do to her appearance.  Getting off steroids was a great day in this journey and returning to them feels like a step backwards, for sure.  But, a slight tremor in Shannon's left side, a little drooping in her lip, and some nausea have forced the doctors hand on this.  The hope is that these symptoms are coming from swelling around the tumor and the Decadron can have an immediate effect.

Dan and I had each noticed the almost imperceptible change in Shannon's face over the last few days, but neither of us wanted to be an alarmist, so neither of us verbalized it.  We each thought - "maybe I'm being hyper sensitive to every little twitch", or "maybe Shannon's just really fatigued", or "maybe it's nothing" ... but Dr. Rao confirmed it during her examination.  In the car on the way to school, Shannon was not only mad about steroids, but she was checking her face in the the mirror and expressing her anger towards us for not telling her what we thought we saw.  I think she only half believed my explanation that we weren't lying to her - just trying not to alarm her.  Shannon expects us to be completely honest with her about everything, and the protective instinct we have as parents sometimes backfires in this situation...

So, as for the Temodar, we are waiting at least a couple of days to start this cycle.  Shannon's records are being reviewed by two clinical trials right now and Dr. Rao explained that she would not be eligible for either trial until at least 4 weeks after her last dose of chemo.  So, we will wait to hear from St. Jude's and National Institute of Health on whether or not they think we should continue our current course of action and reassess after the next scan, or, if they think Shannon is a candidate for a trial and how soon this would happen.

Shannon listened today as Dr. Rao explained the need for the steroid again and also began to discuss the possibility of a clinical trial and what each of them would entail.  She listened to all the information and then politely told Dr. Rao, "I need to go now so I can get to school."  In the elevator we discussed that if we have to pursue treatment somewhere else, we hope we won't have to go until after the Rebels hockey season is over.  Maybe that's a pipe dream, but Shannon is gearing up for practice tonight and an away game in Waseca tomorrow.

It's all so overwhelming right now... to think that these research facilities in Bethesda and Memphis are reviewing our scans today and Wednesday means we will soon have a second and third opinion to consider.  Shannon told Dan and I, "If we have to do something, we should try the St. Jude's study (oral meds) first and then if that doesn't work, I would try the brain surgery at NIH..."  Now, this is putting the cart before the horse a bit, because we don't even know yet what their recommendations will be.  But, Shannon is trying to process all of the what ifs and, truth be told, Dan and I are processing all of this right along with her.

My heart just aches for my little girl.  No 13 year old should have to think about how far they will go to try to save their own life.  But, if and when the time comes, Shannon the Cannon will lead, and we will follow...