Empowerment - Day 1

Today was the first day of the rest of our lives.  It is cliche but I like it.  Both Polly and I felt like we had our feet back under us a bit more today.  The shock factor is turning into more of a day to day determination now and after meeting with the doctor for more than an hour today, a battle plan is in place to go at this thing with everything we've got.  You are very much in luck - we as a family do not typically believe in posting pictures of our kids in a public online forum (i.e. facebook), but we think this situation merits an exception for just one photo.  So, to the right here is our beautiful El-Belle just before her second birthday a little over a month ago.

Ellie got her appetitie back today and was more energetic since the anesthesia from yesterday's procedures is now completely out of her system.  She was somewhat uncomfortable for alot of the afternoon but a little Tylenol helped out.  After dinner, we took an excursion down the hallway of the BASS unit of the wing we're in.  For some odd reason, she and Timmy love to dig through my wallet (I know - yer saying wait til she's a teenager).  Having moaned for a good two hours, when I pulled my wallet out in the sofa area of the wing during our stroll, she promptly sat down and started pulling items out with a huge smile on her face.  She laughed for the first time in two days we we found various pockets to stuff daddy's various ID cards into and for a second, my worries were gone.  Being able to laugh a bit, as I did with her and a while earlier with my summer students, is nice outlet for stress.

We met with one of the main attending docs at 4pm as expected to get more test results and go over the official plan for the next 29 days.  Ellie's white blood cell count had dropped from 85K to 61K since yesterday.  This is a good sign because it means the small injection of chemo into her spine 24 hours ago is starting to kill the bad guys.  So, now we begin our Induction phase where the 4 pronged armed forces of chemo drugs go to work.  The process is 29 days long and today is Day #1.  One of the medications is given only once in that span, two others are given four times, and the last one (a steroid) is given twice a day the entire period.  After the 29 days, we'll have a bone marrow aspiration again and see where we are at.  The expectation and HOPE is that all active leukemia cells will wiped from her system by that date.  She'll also have a couple other medications to take to help with the side effects.  We've been told the proiminent side effects will be crankyness, fatigue, hunger, and hair loss.  The first half of this phase will be done in the hospital and the second half will be done on an outpatient basis if we can keep any cold bugs away.  The problem with killing the bad cells is that the current good ones die too and thus her immune system's ability to fight germs for about two weeks will be very low.  By day 29, her good cells should be back up to normal numbers.  The final diagnosis for Leukemia type was - Acute "B-Cell" Lymphocytic Leukemia.  The designation of "B" type further reinforced that she has the most common form of Leukemia found in children her age.  She recieved her first set of meds tonight and the counter offensive has begun.

Having a plan in place now has given me my first sign of empowerment with this process.  My 14 years of coaching has been a ever evolving refinement of the circular methodolgy of analyzing, preparing, and executing.  When I have had a plan I believe in put into place along with experienced components that will anticipate every move within that plan with my full confidence, there is very little room to beat me.  Polly and I put our signatures on the consent form after the meeting today with infinite confidence we are covering every angle of this horrible disease.  Day #1 was a good day.

It is tough for Polly to be by herself in the room for long stretches when I cannot be there, so please feel free to drop by LPCH if you ever want to.  I'm not liking the silence of this house late at night right now either but I have Timmy sleeping soundly downstairs to keep me at ease.  The one rule we are holding ourselves to and hope you will understand as well if you come to visit - No tears in front of Ellie.  We have found moments to lose it in other places with hope that it will release enough stress to keep us strong during the times she is watching our every move.  I know I am telling you something you all ready know.

The logical, scientifically centered, part of me knows full well that asking the question "Why us, why Ellie?" lead only to banter that will never directly help solve the problem at hand.  Science follows such methodical steps in finding solutions.  If there are no facts in which to base your opinions and conclusions on, then it can be a waste of time in trying to discuss matters because the conversation won't go anywhere toward meaningful progress.  I know that.  The emotional and sometimes irrational thinking part of me cannot help those questions from coming to the forefront of my hourly thoughts this week.  I probably tell some of my students that life is "not fair" about 3-4 times a week.  I can say that as much as I want to during the hustle and bustle of a normal day but it will never comfort me on how cruel life has been for my sweet, innocent, and unsuspecting daughter.  You may or may not know our son, Timmy, was born with a one in a million chance tiny genetic mutation in the FOX 2L chromosome that gave him a condition called Blepharophimosis (BPES) affecting the shape (but not vision) of his eyes.  It is 100% cosmetic in nature but will require him to have multiple eye surgeries over the course of his lifetime (one in a friggin million!).  Neither case with Timmy or Ellie was passed down from Polly and I.....it was just a chance of nature.  Why?

We'll eventually be at peace with this, I know that, so please understand.  Coaching demands you improvise at a moment's notice all the while keeping your eyes on the bigger prize at the end.  Another cliche, but very true - we're in a marathon with Ellie, not a sprint.  Now that we've started to adjust ever so slightly to the mile markers ahead, believe me we're ready to compete.  And we're ready to compete like we've been here before.  "Why?" won't matter when we finally see Ellie attend her first day of Kindergarten.

A very close friend of ours will be emailing many of you with small ways you might be able to help us over the next month since so many have asked.  I cannot express to you enough how much it means to us.  Your prayers lift our spirits and supportive voices behind our firepower is deafening.

Hey, Chemo Drugs - Give 'em HELL!