Progress - Day 271

An excerpt from Ellie and I's culinary conversation earlier this week:

Ellie:    What doing, Daddy?

Me:     Cooking dinner, El.

Ellie:    Why?

Me:     Well, because I know you'll be hungry soon and Timmy needs something other than that which makes him a Milk-a-holic.

Ellie:    Oh.

(Dramatic Pause while she pulls a chair up to stand on at the counter near me)

Ellie:    Daddy, I need that (pointing).

Me:     Why? (Two can play the "why" game)

Ellie:    Ummm because Ellie need help stir rice. (Fair enough)

Me:     Can you say "Spatula"?

Ellie:    FatchooOH

Me:     SPAT-TU-LA

Ellie:    FatCHOO-OH (smiling and very pleased with herself)

Me:     SP....SP.....SPAT

Ellie:    FFFFFFAT

Me:     Exactly.  Here it is.

We've had some good times in our home confinement of sorts these last few months.  Maybe things don't always go as they should.  But they are GOING nonetheless.  

Her progress since the end of DI has been good.  It has been three weeks since her last Vincristine chemo injection, so it is fantastic to have a break from major side effects for a while.  Her energy has been tremendous and though she physically cannot do everything as fast as Timmy does in terms of running, jumping, and climbing....she certainly tries.  I love the fact that she never gets discouraged on that front either and just keeps plugging away.  The sport of choice with the neighbor kids on the front patio as of late has been lacrosse.  Prior to the game beginning, Ellie makes sure everyone has the proper color stick and assigned ball because of course everyone gets a ball in this particular game. (Well how do YOU play?!) When she and I went outside for a bit while Polly and Timmy went to run an errand, she made sure to set a stick aside for Timmy to have when he got home.....and told me NOT to pick it up.  All righty then.  Often in the evenings, we take Daddy+Twin trips to throw the garbage away in the common bins within our complex which requires about a 30 yard jaunt.  As I am reaching to keep Timmy from leaping off the stairs in front of me, it never fails that 10 yards behind me will be the two-hands-firmly-gripping-the-railing-call "Wait for Ellie!"  

She eats pretty well during these periods between phases and has moved her waking time from 5am to close to 6:30am for the past week.  She does not sleep through the entire night still though as we seem to be in a phase where she does not like to sleep in a less than completely clean diaper.  So, she wakes sometimes as many as 5 times a night and unfortunately for Polly will only allow Mommy to change her.  This undoubtedly is again a lingering mental thing from when her chemo containing excretions from a particular drug taken a while back (cyclophosphomide) would give her skin a burning sensation.  It has also become a 2 year old attention-grabber habit which we need to break sometime soon.  She even on some occasions calls for medicine when she doesn't really need it for phantom mouth sores.  A syringe full of extra special, high quality, ultra powerful Dihydrogen Monoxide (water) seems to do the trick.  It is a tough question to answer on some nights whether her sleeping patterns are a result of chemo or her age, but Polly has done well (with enormous patience!) on trying to break her of the multiple wake up calls.  The power of the "M&M in the morning" bribe can never be underestimated.

Her blood counts have not recovered as quick as we had hoped though they tell us that is to be expected.  She is still neutropenic and now two weeks delayed on starting LTM.  Her platelets have recovered to normal levels and her hemoglobin has slowly risen, which is a very good sign because it negates the need for any transfusions.  Her white blood cell count and thus ANC value have been very much in flux.  She has had a mysterious rash of sorts for the last week and despite no other symptoms, our NP's best guess is that this may be a small virus and thus the reason for the White Blood Cells remaining low as they go to fight it off.  So, we stay inside for another week or so.  Not a bad thing as it will be raining here again most of this upcoming week and Potty Training D-Day is about to begin in the next week or so.  We are going in twice a week for labs right now until she qualifies for LTM and once she does, we'll have her LP+Vincristine and then begin a year and a half worth of daily 6MP pills.

Speaking of pills, one of the Bass Center resources open to us is the ability to see an Occupational therapist for help with taking medication.  We haven't needed this much to date because she has been so good at taking liquids orally and getting everything else through her port.  The 6MP is a difficult thing to dissolve at home despite my best efforts.  I can get it down to 90-95% in a "suspension" with certainty....but when we're talking about chemotherapy efficacy, Polly and I both see no reason to settle for anything less than 100%.  So, while exploring options we thought we would see if she could swallow a pill for the first time and the Therapist she saw today provided some tips she said normally do not work until the kids are 4 or older.  Amazingly, she swallowed every type of candy (posing as pills) they gave her.  WOW.  If she can learn to swallow the 6MP pill, we will be that much closer to our goal.  Her determination is evident and possibly wise beyond her years.

A senior student at school, who I haven't had the pleasure of having in class but know from athletics and passing in the hallways and who I also think fairly high of, put out a remarkable "tweet" a few days ago which rang very true for me:

When you are satisfied with where you're at....then it is time to worry

You see - they do learn!  :)  I smile because I think there are many moments each week where I am learning more from the 120+ kids sitting in the desks around me rather than the other way around.  Progress can be measured sometimes in inches but it is still progress.  Maybe 271 days seems like a long time to be in this battle, but when I hear things like that quote, it reaffirms that we are one day farther away from June 26th AND one day closer to reaching another milestone.

The network of parents who face the same situation as us brings a great deal of strength....especially to Polly and I when a funk can set in with regards to worry.  If there is an ease to our often quiet misery, it is the simple known fact we know to be true that we are not alone.  So, since we are feeling pretty good this weekend, it's time we return some favors and "pay it forward" as a father of a boy who has been in A.L.L. remission for 10 years now eloquently said on a message board post I read this past week.  I hope you will all keep prayers tomorrow (Sunday) in church or wherever you might find a quiet moment to yourself for our fellow little cancer warriors Lilian, Sy, Justin, Mia, Jacob, and of course our sweet Ellie-Belle.  If you have a moment, please check out the NEGU foundation - Click HERE - an amazing organization whose motto is "Never EVER Give Up" set up by two parents who lost their own little girl (Jessie) just two and a half months ago.  Ellie received one of NEGU's "Joy Jars" a while back during one of her longer chemo days at LPCH.  Jessie's supportive touch will be helping many for years to come.  Every type of outreach like that in this horrible world of children's cancer makes distance between support lines a little smaller and our network that provides legs to stand on a little stronger.  That is Progress.  Today was a good day but tomorrow there is more I can do.....and there is definitely more WE should do.