Friday May 13, 2011

On Thursday Shannon's doctors told us the tumor is responding nicely to the first three weeks of healing.  Before we could turn back flips down the halls of the 16th floor of the Mayo Building, we were reminded the response was predicted.  In fact, about 80% of gliomas respond favorably to the first doses of radiation and chemo drugs like Temodar (aka temozolomide).  Still, it was another great day! 

Erin skipped school to be with us for our Thursday consults which started with a full neuro work up with Dr. Keating.  Dr. Keating and Dr. Kotagal were the pediatric neurologists tasked with breaking the news of our prognosis four weeks ago.  Dr. Keating seemed to be enjoying today's exam as Shannon was put through the ringer starting with many of the coordination tests you might see in a roadside sobriety test and then working through reflex, hearing, eyesight, balance and memory drills.  She nailed it. 

Dr. Keating shared that "It is our job to worry, it is your job to prove us wrong and right now, Shannon, you are proving us wrong!"

The temozolomide's effect on Shannon's blood work was also predicted.  And, while all her counts remain well within the "normal" range, certain numbers are trending downward.  Nothing to freak out about.  We knew the drops were likely.  But when these white cell counts drop we have to be careful.  Even catching a common cold at this time can be a bad deal.  So getting solid rest, washing hands often and practicing good nutrition become really important.  Shannon insisted I wash my hands before making breakfast this morning.

Shannon also continues to taper off Decadron - the steroid she's been taking since the tumor was first discovered.  From the diagnosis, the Dexamethasone was effective in reducing swelling in Shannon's brain.  But now the tumor is responding to the healing and the steroid will no longer be necessary.  Today she will be down to just 2 mg.  In another 4 days we'll go down to 1 mg. By the end of next week we will hopefully be able to be done with the Decadron.  Of course, every action has a reaction.  The steroid has clearly been a kicker to Shannon's energy levels.  The combination of weaning off the steroid and the cumulative effects of the radiation and chemo could take its toll.  But nothing surprises us with this kid...these kids...both our girls have been performing way above their pay grade.

Shannon's radiation oncologist Dr. Laack also gave us a good amount of time and attention Thursday.  That's big stuff considering Dr. Laack's reputation as one of the best.  Shannon meanwhile was looking at her watch anxious to be done with a long day at Mayo; "got it, I'm good!".  But, when doctors like Keating and Laack give you extended take come up with show them pictures of your kids with Sheryl Crow (Dr. Laack was at the show too) share and you learn.  But I can tell you with 100% certainty that both these doctors are enjoying Shannon and our family.  Even in a cramped radiation exam room in the Mayo Clinic's Charlton Building we can find something to laugh about.

I also have to point out that halfway through our healing the loving relationships we are forging with our support teams are incredible (Denise, Jacque, Heather, Michelle, Shanan the Scheduler, Janelle, Kelli...on and on...).  It's hard to believe that we are going to be sad when daily healing ends - but saying goodbye to these people will be hard.  It goes back to what I posted a while back - if you like my kid - I like you! 

Outside, spring has sprung.  Our feeders are bustling with activity.  The gold finches have returned to SE Minnesota.. rose breasted grosbeaks...orioles...even an indigo bunting has been spotted. 

The other big news here on Willow Lane - Shannon and Erin are the proud owners of a sweet E-Z-Go electric golf cart that can shuttle them around the neighborhood.  The cart's majority stockholders are Grandma and Papa Harkins, Uncle Eric, and the Shannon Fund.  Jen and I get to use it too.  :)