Almost Home - Day 5

While wishing that title was more metaphorical than anything else, we'll gladly take the literal interpretation for now.  Ellie has been weened off of her IV fluids since this morning and is in enough of an initial groove with her meds that we can start administering them at home very soon.  If things can hold steady tonight, then she has a good shot of being discharged tomorrow.  Though one thing we've learned through Timmy, don't bet on discharge until you are actually walking out the door.  The docs will do a electrolyte check tomorrow (called a Chem-10 panel) and more blood work.  Her hemoglobin count (red blood cells, basically) seems to be holding steady slightly about 8K and her platelet count above 10.  If either drops below those marks, she'll need transfusions tomorrow.  Transfusions are somewhat routine with leukemia patients, so it wouldn't necessarily prevent us from going home.  Low red blood cells lead to anemia, pale skin, and more fatigue.  Her white blood cell count is now hovering around 1000.  Given the peak measurement we had of around 83K on Monday, this means that roughly 98.8% of the mature bad guys have been eliminated (I teach math).  Shock & Awe INDEED!

She has been very tired and not wanting to do much of anything which as I've said before it tough to watch for long periods of time.  Today we got some playtime going with Mr Potato Head and our neighbor's awesome gift of a wallet (just for her) with about 50 laminated "credit cards".  I guess folks read the blog!  She also perks up with the smell of "yellow pasta" (mac n' cheese).  A girl after my own childhood heart.  The highlight of the day was seeing her leave our grasps for a moment to accept an invitation to color at a nearby table with another little girl in the lounge.  Though all she did was retrieve a piece of paper/crayon and then come immediately back to us....watching her walk a bit was really great.

The big days for Chemo treatments in this first month are 1, 4, 8, 15, and 22.  She handled her lone dose of PEG-Aspargine yesterday very well (one shot in each leg - ouch).  This Wednesday will be Day 8 (pushed back a day to allign with doctor's schedules).  It will require us to be in the Day Hospital clinic at LPCH most of the day for her two Chemo drugs that are given through her PICC line and she'll also have a procedure under general anethesia where they'll take another bone marrow sample from her hip.  This will be Polly and I's fourth experience with general anethesia on our kids if you include Timmy's two eye surgeries from a year and a half ago.....and well, it sucks.  Not sure how else to say it.  Rest assured I will have some choice words for cancer while I sit in the waiting room. (Polly will stop me before most are verbalized)  The marrow sample will give us an idea of progress but we've been told to not look into it as a bench mark toward potential remission.  So, we'll keep our eyes (and PRAYERS!) on the end of the month for that.

A few folks have inquired about donating blood.  You guys are our heros, seriously.  The doctors say it is best for Ellie to recieve blood only from the general blood bank, but we encourage you to donate anyway so that someone else may benefit OR it replaces the amount lost in the Bank because Ellie recieved it.  We are told that giving blood directly to Ellie would eliminate somebody as a possible bone marrow donor for Ellie (Polly and I included), so this is important for our family members to know.  Ellie has blood type A+ and according to what I know from the red cross, she can recieve transfusions of either type A+ or type O blood.

Some site notes - I am relatively new to this blog thing, so checking out the page "stats" is kinda fun.  It tracks which countries our viewers are reading the blog in and how many pageviews from those countries.  Outside of the USA, we have stats showing a handful of page views in Australia (thankyou, Stacey), 2 views in Turkey, 1 in Germany, 1 in the Phillipines, and 1 in Jordan.  (Jordan?)  Ellie has gone global.   Also of note for those that seem to have trouble leaving comments.....it seems you need a GMAIL account to do so.  Very easy to get one.

There are two coaching figures who have indirectly had a significant impact on my life and the work ethic on which I approach a great many things.  Both college basketball coaches, ironically.  One, of course, is John Wooden because of his devotion to fundamental building blocks and unwaivering commitment to his own principles.  But the other guy is the one I want to mention here.  I have quoted his words to groups & teams in the past, have donated to his "V" foundation long before Ellie was born, and now his words mean something much closer to the heart.  His name is Jimmy Valvano, head coach at North Carolina St in the 1980's.  His timeless speech came at the 1993 ESPY awards a month before he lost his own battle with cancer.  You can see his speech by clicking HERE.

His sacrifice and his foundation has brought about millions of dollars to help improve research on treatments like the ones Ellie is receiving now.  Truly remarkable.