Another weekend in Memphis

Our ability to predict what is going to happen on any given day is completely kaput.

Jen and I both woke up today taking glances around our apartment each thinking to ourselves; "how long is it going to take to pack this place up?".  We were pretty sure we were heading back to the 507.

Before we could leave, Shannon was due for labs required as part of the clinical trial we came down to St. Jude's to take part in.  But before Shannon got another poke Dr. Wetmore wanted to see us.  She came in and announced that it was "time for a new plan.  First, let's go look at some pictures."  So we were steered into a consult room... Dr. Wetmore, Nurse Vicki Fergus and Team O'Hara.  Pretty cute to see Erin pushing her sister's wheelchair into position in front a bank of monitors and then holding Shannon's hand.  Dr Wetmore proceeded to pull up image after image of Shannon's brain from scans taken at Mayo in August and November comparing them to the two scans taken at St. Jude's December 7th and December 14.

What jumps out at you; this ain't no cell death causing some swelling.  The tumor is alive and growing and growing fast.  Even from December 7th to December 14th there appears to be significant change of at least 10%.  So let's just get all our cards on the table before we make any decisions.  The reason Shannon has lost her right side - her dominant arm, hands, legs and feet - the reason her vision is blurry and the reason her ears are constantly ringing and the reason she feels like shit is the tumor is growing against key nerve regions in her Pons.

So Dr. Wetmore laid out our options; 1) Go home and say enough is enough 2) stay on the study at a lower dose of crenolanib which will keep her in the trial or 3) stay on the trial at the 220mg adult-sized dosage that is definitely taxing Shannon's system to the max.  Guess which one she picked?

Shannon kept asking; "what gives me the best chance"?  Of course, the answer is the 220mg blast of chemo for 28 straight days.  Daydreaming about the mapping of our route back to Rochester, I heard Shannon announce; "let's stay."

Either way - we decided as a group - we would be home for Christmas.  Either Shannon is going to stabilize as the drug gets fully into her system or we are going to be miserable and pull the plug on the trial anyway and head home.  We'll know by next Thursday.

At this point we really want Shannon's data to matter - if we can't complete the trial her labs are thrown out.   Shannon wants to matter.  I sense that's a big part of how she's weighing her need to feel good and her want to be around friends and family.  To keep going in the clinical trial gives her the best chance to accomplish all goals (and get home for Christmas).  It gives her a fight.

By the end of the day we were back in our apartment. We had purchased Shannon a new Ipad and she had a renewed determination in her eye.  She had been ignoring texts and Facebook requests because she couldn't see them on her phone.  She can see the Ipad much better. She can see and with her left hand she can execute replies to her friends.  Her Facebook post tonight says it all: "Thanks everyone!  I have a whole weekend to myself.  No appointments. Yay!!! Can't wait to see Anna Olson on Monday!!" 

Yes, one of her BFF's is coming to Memphis to see Shannon.  Just what the doctor ordered.