Difficulties - Day 3

No one even remotely suggested this would be easy.  Watching Ellie try to bravely endure the chemo side effects that have started to show themselves now is very difficult.  The war inside her is moving quickly with the drugs getting the upper hand very fast (that's a good thing).  You wonder what makes cancer so dangerous when the bad guys wave the white flag as if they wanted to be captured.  Ellie's white blood cell count which peaked somewhere in the 85K range on Monday afternoon has been reduced now to 2200 (so you know - 10K is normal for a child her age).  She recieved a platelet transfusion on Monday night which I think has given her a little bit of a boost but it also continues to drop as a casualty of circumstance.  As a result, her current immune system rating of 400 has offically fallen below the minimum level for healthy of 500.  So, we begin a solid 2-3 week period now where we must do everything we can to keep germs away from her.  Not so scary in the hospital, where I think they even hand santitize the broccolli.  But they are talking about us possibly being discharged by mid next week which makes Polly and I very nervous in terms of germ control.  Thank god its summer time, another small but significant silver lining.

The biggest concern right now is trying to ease her misery.  She has been very upset alot of the last two days which we were told is the major side effect of the Dexamethsone steroid she is taking.  The hospital has a nice model train setup out in the hallway where kids can watch from various locations and push buttons on the sides of the glass around the perimeter which make various noises.  This has produced, all be it brief, distraction a couple of times today.  We also can go outside in the inner courtyard and show her the water fountain which is a nice walk for all four of us from the room (the four being - Ellie, Polly, the mobile IV machine on a pole, and I).  We haven't seen many other kids venture out of their rooms so we're starting to wonder if we're the only ones who do these walkabouts.  One of the things about the chemo drugs is that they cannot sit in her system too long once they been fully digested because of their level of potency.  So we're hoping desperately to achieve a digestive P(rocedure) O(f) O(ptimal) P(recision), if you will, so that yet another uncomfortable doctor intervention isn't necessary in the next 36 hours which neither Polly nor I want to have to put her through.  Funny these procedures were never an issue when I would watch her and Timmy by myself on evenings when Polly works late.  In all seriousness....it is so tough seeing her poked and prodded with so many things.


To help kids take their medicine, LPCH actually has a really great method they sent us to help out in the form of "Chemo Duck".  It is a stuffed duck dressed in a robe and scrub cap and has his own PICC line coming out of his arm just like Ellie.  I nicknamed the duck "Phil" though Ellie was not very amused by this.  It does not quack, but it comes with a doctor's box of tools like a blood pressure cuff, an ear scope, stethoscope, and a fake syringe.  This was pure genius whoever made this up.  Ellie loves it!  So, "Phil" gets a good 4-5 Chemo shot-in-the-arm treatments at a time from Ellie and then she turns and much more willingly accepts her 1 treatment from our nurse.  (BTW, at this rate Phill will be cured by 8am tomorrow morning).  The same guy who gave us the duck also runs a playgroup a couple times a week in the morning and evening where both sick kids and healthy siblings are allowed.  Timmy enjoyed this alot.  He has been so great through this ordeal so far.

We continue to try and look at things day by day.  The future seems very overwhelming but it is nice to have a rough date set of around July 28th or 29th as our first major milestone where Ellie's marrow will be tested at the end of her Induction phase.  Polly and I's faith in our daughter's fight need goals along the way to look forward to.  It certainly won't be the end by a long shot, but it fills us with hope.

I want to leave you with a poem that a dear friend from my close-to-the-heart Bruin family reminded me of yesterday in an email.  I can't believe I forgot about it though I guess you could say we've been a bit busy this week.  I used this poem as one of 2 main motivational centerpieces in my team's lockeroom at Serra during the 2009-10 season.  Prior to the season beginning I had been studying some of Nelson Mandela's teachings and methods he used to persevere while imprisoned for so many years.  This was a poem he read to himself and several other prisoners to help keep hope alive over many occasions.  Its title is "INVICTUS" which is latin for "Unconquerable" written by William Ernest Henley:

INVICTUS

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

 

 

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

 

 

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

 

 

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Thankyou, Vince