Wednesday November 30, 2011

We had a good chat with the girls this morning over breakfast.  Shannon was receptive to discussing clinical trials.  Erin, as always, an eyes-wide-open listener. 

We are in agreement that as long as Shannon can feel productive as a member of the Rochester Rebels 12B's we will keep skating.  Watching Shannon and her pals goof and laugh in the locker room and at DQ on the way home from our game in Waseca - it's hard to imagine a treatment plan with more benefit to Shannon's mental health.  However, our desires need to be weighed against all possible opportunities to extend Shannon's life. 

Dr. Rao told us Monday that the National Institute of Health trial wants Shannon - she's an ideal candidate.  But NIH recommended we start immediately while they can treat the whole tumor.  NIH Nuerosurgeon Dr. Lonser will tell us all about the procedure.  We have his number sitting right here.  The NIH procedure would require a surgery - inserting a small plastic tube into the tumor area to apply an experimental toxin directly to the cancer.  If we wait too long we may miss our window of opportunity with NIH.  Aggressive tumor growth - even changes in 4 or 5 weeks - could make it impossible to treat the entire area.  Shannon's next MRI is scheduled for the first week in January.

Enlisting in the NIH trial - post-haste - would mean picking up and heading to Bethesda Maryland while Shannon is still feeling good enough to play hockey and go to school.  She said to us this morning she usually gets to school and the sadness goes away.  Being around her friends is really good medicine.  We have so much to consider.

Today we hope to hear from Dr. Wetmore at St. Jude's.  Will Shannon be a candidate for that clinical trial?  That trial involves daily oral meds - a receptor inhibitor to interfere with tumor growth or spread of the cancer.  That trial involves a four-week stay in Memphis.  So much to consider.

Shannon told us this morning the steroids are working.  She feels better.  Less pressure in her ear after just three 1mg doses.  But while the steroids help with the symptoms they are not doing anything to slow tumor growth, they just mask the effects. 

Both clinical trials are Phase 1 studies - gathering data.  There is no proof that either trial will buy us time.  So much to consider.

Today Jen and I are circling the wagons and taking care of business to keep us ready for whatever is ahead.