In Patient - Day 61

The stress of fever watching all last week finally peaked not even 12 hours after my last blog post.  Ellie woke up  on Thursday morning with close to no energy and running right at 100.3°, the exact line of hospital worthy fever vs stay at home fever (if you trust our thermometer).  This is where the logical side of my brain really pisses off my emotional side.  Kind of like the angel & devil ducks sitting to the right and left of Donald's head in those old Disney cartoons.  My scientific mind, for better for worse, immediately thinks "Given the standard deviation of a group of readings with a store bought thermometer and the fact that it likely isn't calibrated very well....you know she is well above 100.3, go to the hospital - NOW" while the emotional side is more like, "we called the doc and she said it must be above 100.3, she believes she is fine, so let her hang out and be at home where we know she is happier".  Logic often loses those discussions.  So, I leave for work and don't even make it off the freeway before Polly calls to say she is now completely sick to her stomach.  Emotions too often get in the way of logic but logic doesn't know what it is like to have a 2 year old with cancer.

Polly took Ellie on Thursday to the Stanford ER, which is where all our hospital stays have to begin by the rules.  The only bad part of that is the ER isn't nearly as comfortable as the Bass center and she is usually at her sickest when we are there, so perhaps excuse us if we lack a fondness for the place.  6 hours later, Ellie was moved into where we currently reside in the Bass center.  Her queasy stomach was likely just the first major sign we've had in Consolidation that the nausea from the build up of many chemo drugs finally got the best of her.  They immediately run a series of tests on her blood (mainly) and a harsh test up her nose for any traces of bacteria (and some known viruses) because they aim to figure out exactly what bug it might be.  She came back positive for the Metanuma virus.  Our dear old friend from last winter which Timmy came down with and eventually led to his pneumonia.  This really couldn't have been worse timing because her blood counts just bottomed out.  She has virtually no white blood cells in her system right now....so little in fact, the blood lab cannot get an adequate number of them together to calculate an ANC level (immune system rating).  Her blood counts will almost certainly be down for several days now and we have one more round of chemo scheduled on Tuesday to end our first half of the 8 week Consolidation sub phase.  So, the harsh reality if it all is that they can treat it, but we're going to be staying at LPCH for at least a week or more.

Her chest has remained clear even though she has a cough, thankfully, so we don't even have to go there right now.  She has been pretty unhappy from her digestive system being unsettled too.  The Vincristine shot from Tuesday really wreaks havoc on this part of her.  We come to find out today, she also picked up a bacterial infection known as "C-Diff" which explains why her system continues to tie her in knots.  Friday and Saturday were not good days.  Her energy has been so low that she doesn't want to do anything during large parts of the day.  This is the part of cancer I hate the most, to see her like this.  Nobody deserves this.  Nobody.

Today (Sunday), she did turn a corner, her cough was better, and she was lively enough to play/laugh with me and give me at least one solid "GoalASO".  We played with some play dough while watching "Finding Nemo" about 5 times....though she now tells me to fast forward through the part with the shark.  Trust me, he has now been found.  She even blew me a kiss as Timmy and I left this evening.  Polly and I are very tired, but she finds a way to keep everyone's spirits up.

Ellie has to stay isolated to the room because of the type of virus she caught in fairness to the other cancer patients in the bass center, which means Polly cannot leave the room either.  So, if you want to stop by to say hello, please do, Polly is welcoming all visitors.  The stress of this all can be very overwhelming, but I think there is a small silver lining with the hospital stays because she is being watched 24/7 by all these great nurses and doctors.  Thus, we don't have to go to bed at night in our own home worrying about a fever spike in the adjacent room like we did most of last week.  That is, for the most part, pretty reassuring.

At the top of Coach Wooden's Pyramid of Success is the idea of Competitive Greatness.  It is the all encompassing phrase that brings together every element below it with the hope that they all come to the forefront in a collective unison when the opportunity presents itself.  Coach Wooden described it as "Being at your best, when you best is needed".  This is without a doubt something I have found to be unbelievably difficult with an experience of this magnitude.  I guess that's the way it should be.  There is no way to be on top of this situation every day.  We must work at all the different things that need to be done and be able to ask at the end of the day - Have I done everything I can possibly do?  I Hope so.  To be able to emphatically answer with an unwavering confirmation would logically be the ultimate "best", right?  Unfortunately, emotions make that answer brutally hard on weekends like this.  I'm guessing Coach Wooden's daughter blew him a kiss or two from the stands on many an occasion.  So, perhaps today's goodbye was Ellie's way of answering the question for me.  How could I not come back tomorrow with anything less than my very best?  She deserves nothing less.