Princess Emerson turned 5 years old today!  It’s sooooo hard to believe, feels like 5 minutes & 5 decades all at the same time.  I can’t believe my little girl is 5.  It was nearly impossible not to spend this day reflecting on the crazy journey that began 5 years ago today.  In all I’m sad for everything Emerson has missed but am so proud for all she’s accomplished.  It was a day of mixed emotions for sure.  One person who was not mixed about this day, though, was Eme… she spent the morning dressed as Belle from Disney’s Beauty & the Beast and ate cake & frosting (the only one time a year she’s allowed sweets!).  I coerced her into taking the dress off after lunch, but fought all afternoon to keep it off!  While fun for a bit, there is a reason hospitals put their patients in hospital gowns… princess gowns (overflowing with sparkly jewels & layers of crinoline) are not so conducive to administering medical care.  Still, though, everyone was more than happy to tolerate a few hours of inconvenience to accommodate the princess on her special day!

The news from there is not so great.  Emerson has been fever free & has a negative blood culture from 7 days ago, but… her white count started to climb over the weekend & ID on her last pseudomonas has returned – it has officially now gone resistant to EVERYTHING.  There is no single drug left to treat this infection.  It is the situation we’ve feared for a long time & it is finally here.  They’ve been administering an extended infusion antibiotic which, they surmise, has kept the infection at bay.  With her WBC climbing, though, there is some concern the infection may be taking over again.  They’re adding more antibiotics today & hoping the combination of different drugs will effectively kill this organism.  Beyond that no one wants to speculate where this may be headed.

Emerson’s potassium regulation has been better overall, though she continues on very high potassium supplementation & occasionally requires additional intervention.  The team suspects she’s had kidney damage as a result of years of repeat exposure to highly toxic antibiotics.  It is permanent & irreversible.  Sadly these drugs, while life-saving, have been administered at a price.  As they often say around here, there are no free lunches anymore… not for Emerson.

On top of all that, & to help explain my relative silence here on the blog, we’ve had some very distressing news in my family.  My father was diagnosed with cancer just over a week ago which, after several days of speculation & testing, looks to be stage 3 tongue cancer.  He is young & active and rarely ever sick.  He doesn’t smoke & drinks only occasionally.  It is shocking news that has thrown our family into a state of panic.  Sitting on the beach with him in July, I could never have seen this coming.  I flew home to Michigan this past weekend to spend time with the family before he starts treatment… we’re anticipating news of a “plan” on Wednesday & know it will mean difficult days ahead for Dad.  Please keep Emerson’s Papa in your prayers as he fights this ugly disease.  And fight he will… beware cancer, you’re about to meet your match!

Finally, in light of this unexpected news I want to touch on a little something I hear a lot about in my world – statistics.  What I’ve learned about statistics is this – they mean nothing.  Unless there’s a 100% certainty something will or won’t happen statistics are meaningless & serve only as a false sense of security or a false predictor of doom.  The truth is, as long as there are two possible outcomes you have no idea on which side of the “statistics” you will fall.  They are simply a percentage representing the course of others & they are missing the very most important predictor of your outcome – YOU!  I’ve always said, until they’ve studied 100 Emerson White’s the numbers mean nothing… the same can be said of anything in life.  Educate, advocate, & believe – it is all you can do to improve your chances of ending up on the favorable side of “statistics”.  And sometimes that isn’t enough, don’t get me wrong.  I’ve seen intelligent, positive, faithful families lose their loved ones.  Sometimes there’s simply nothing you can do to affect an outcome… sadly there are some things that, for whatever reason, cannot be overcome.  It is the best & only way, though, to navigate through the uncertainties of life – educate, advocate, & believe, believe, believe.  Oh, & hope… always have HOPE.  We love you Dad & stand beside you every step of the way!