The Equalizer - Day 10

I hate giving up the early goal.  Anything scored on a team of mine less than 10 minutes in is like a sucker punch.  You spend so much time planning and training to meet goals on the horizon with hopes that you are as prepared as you will ever be to come out the victor.  And within the span of a few minutes everything about the game changes, tactically and perhaps more importantly - mentally.  As a coach, once the game begins, there is nothing much to do but sit back and watch it unfold nervously on the sideline.  You try not to lament what might have been but hope to see a little poise under pressure from the team so to climb its way back.  Then, a little magic happens after you may have questioned if it were even possible.  Your team shows its true colors, pulls one back, and scores the equalizer.

You are going to get a science lesson tonight - After Wednesday's long session at LPCH, where a sample of Ellie's bone marrow was taken for the Day 8 data point, we were told to come back on Friday for end of the week labs (blood work) and they would discuss the results of the bone marrow analysis.  Up through last weekend, I had been mentioning to you about the happy decline of her leukemia driven white blood cell (WBC) count.  As the chemo drugs began their campaign in the very early stages, a dramatic lowering of the WBC's shows that there has been progress in her body with all mature blood cells.  As we are finding out, getting rid of the bad guys already in the blood, thanks to the forumlation technology of today's cancer treatment world, is relatively predictable.  The real key is to get after the source of where they are born, so to speak, and formed in their premature state - her bone marrow.  We've hit her bottom point in terms of WBC count, so the focus shifts to how many of the bad guys can still be seen in her marrow.  Her body has started to regenerate healthy WBC's and thus her counts from here on out will fluctuate a bit but are not expected to go below 1000 anymore.  Back to her marrow - on the day of her diagnosis it was estimated to have been filled with 93% Leukemia cells.  Why do I tell you all of this?  Well, because on Friday the Day 8 marrow results given to us showed that her marrow now contains only 1% leukemia.  YEEEEAAAAHHHHHH!   In fact, the docs say the visual observation of her marrow which so clearly showed the cancer two weeks ago can no longer see a single cell with the naked eye.  The 1% can only be detected through the minimal residual disease (MRD) testing they do under the microscope.  Translation - Ellie has Equalized.  (That's my girl!!!!)

Polly and I were very happy but we continue to hear what the docs are telling us and guard our excitement for now.  The Day 8 data point is only a progress report, and we're still very early in this game.  The docs did make sure to reiterate though that she is responding very well to the treatment and that gives the medical team alot of confidence.  In turn, it fuels our family fire as well to keep at this with a fever pitch.  They will not do another bone marrow check now until the goal date set all along for this first phase - Day 29 (which should be roughly July 27th with results coming back on July 29th).

Unfortunately, the 10 days that have gone by have taken their toll.  She is very tired most of the day and rarely smiles much.  As expected, her incredible hunger has reached a new level.  We are in the pattern right now of eat then sleep pretty much all day with a few times up in the middle of every night.  One of the hardest things is that she is still not old enough to verbally tell us in full sentecnes what is hurting her or what she may want at a given time.  Polly has been amazing at being able to read her and make adjustments with the side effect meds, but it is always a work in progress.  We are both hoping that when her steroid allotment for this phase ends on Wednesday, we might have a happier Ellie on our hands.  We try as best we can to make her comfortable and give her the love she needs to keep fighting.  Both sets of T&E's grandparents have been here this week and weekend to show them some love and provide immeasurable support for all of us. (Thanks, Mom & Dad)

The continued outpouring of support we receive daily from people in all walks of our lives is so wonderful.  It helps us get going during a few bleary eyed mornings and helps sustain us during long days at the hospital.  Ellie's strength is one of the most inspriational things we have ever seen.  She has fought back from the very beginning....deliberately, effectively, and gracefully.

After a sucker punch at the beginning of a game she never wanted any part of, I'd say she has pulled even....and done so with all the time in the world left to go. GAME ON, cancer, GAME ON!