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Thursday, September 8, 2011

Always Forward - Day 72

One of Father Serra's many famous quotes so remarkably embodies his self sacrifice and persevering perspective on the often overwhelming journey that faced him and those that followed him.

"Siempre Adelante"
(Always Forward)

Its simple but effective.  We get knocked down, we pull ourselves up, we brush ourselves off, and we take another step forward.  What other choice do we have?  Sometimes you have to sleep walk to get that foot out there but dammit, for the sake of your child, you move!  Have I done everything POSSIBLE to help my team today?  Have I done everything to help my daughter today?  I tell you, after great days like we've had this week when she has turned a corner from a bad week and a half prior, the feeling of resolve grows that much stronger because we were able to find a way to step forward.  The celebration of a good Thursday today seems that much more enjoyable.

Soon after my last blog post, we got the green light to take her off the antibiotics she was still on for the C-Diff bacteria.  Thank god.  Not sure yet if we can get an alternative drug for her if this were to happen again, but after she came off of it, she started eating again.  She had lost almost 2 kilograms (about 4.5 pounds) in about 2 weeks time.  Just today before her chemo treatment started, she weighed thankfully in having gained some of that back.  Even better is that on her lab day last Tuesday, after a week of immune system readings so low they couldn't even run the test to completion, she marched in and put up a 1200 on the ANC scale (she was at 100 just 7 days prior).  Her energy has been way up this week, she has been laughing out loud at her brother, ordering Polly around as to which is the appropriate sippy cup for every meal....AND just being a two year old.  Her high ANC levels means she will have no delay in starting her next set of 4 week treatments, which actually began today.

Polly took her to LPCH today for the drug that requires pre and post hydration of several hours.  It was a 10am-6pm day.  And El handled it like it was nothing.  We began the nightly doses of 6MP again which is now handled in this household like we've known how to suspend it in solution for years.  We give this to her after she has been asleep for 2 hours and tonight she took it and went back to sleep instantly.  She also had that prickly catheter put into her arm for her 8 Cytarabine shots we give in the coming week and a half at home.  Again, like it was nothing.  I think later in life at some point if I have ever have a problem moving one foot forward in front of the other....Ellie will likely be right behind me ready to give a solid (but loving) shove.  This girl is nothing short of a miracle.

So, our batteries have been recharged and I think the in-patient experiences we deal with make the healthier times even more enjoyable....even if we do have to use a baker's dozen worth of sippy cups during the day until we finally use the one SHE wants.  We do not have to go back to the hospital for 7 days and they do not expect her blood counts will fall for at least the next 7-10 days.  So, this should be an awesome weekend to play, and you better believe we're going to jump on the bed.

We said goodbye to one of our favorite travelling nurses today who finished her stay at Stanford and is now moving to San Diego.  Polly said Ellie ran to her and gave her a big hug today before they left to come home.  One of our many personal angels we've met on this journey.  Thank you to all for the continuing prayers.  The orange ribbons of hope worn by many of our friends and family catch my eye every time.  Cancer will NEVER be able to break the many blessed hands that are holding Ellie up right now.  For that, Polly and I are eternally grateful and maintain unwavering courage to keep moving forward.


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