ASO Moments - Day 47

I'm sure we are experiencing a very common occurrence in the lives of two year olds.  Those stunningly poignant moments when the English language comes to them near instantaneously while in the midst of using every ounce of energy they have to spit out a new word for the very first time with of course crystal clear clarity (and a little extra saliva).  We've been showing both T & E how to kick a mini soccer ball over the last couple of months and with the evolution of language, we now have added a louder volume in the living room to the beautiful game.  I got Timmy to raise his arms in the air after each kick and yell "GOOOOOOLLLL!" and thought it was impressive enough.  Polly very wisely and independent of my practice session told Ellie at some point the more proper exclamation was "GOALASO!" (I mean it brings a wee tear to my eye).  Ellie, still finding her way with multiple syllable words, now runs around kicking the ball proclaiming "ASO!" with complete and total jubilee.  There are few things better in sport than what that word, when it occurs, can mean to an individual, a team, a country, and I do dare say an entire culture.  There are even fewer better things in life than seeing a girl in Ellie's situation find the purest form of joy from some activity in her day that radiates in this concise proclamation.

Last Tuesday's marathon day at LPCH went pretty well.  Her procedure for the LP, her chemo injections, and her time sitting for hours while getting hydrating fluids did not slow her down a bit.  The side effects set in over time, so I do not believe we have seen everything we are going to see quite yet with this phase since her energy has only taken a minor dip this week (and only in small spurts at that before recovering nicely).  We've been blessed with a pretty good last week; however, the few downward spirals she's had in certain moments can be fast and require a lot of patience (difficult to have when it is the end of the day for us).  Little things set her off, we believe, when she is more tired than anything else.  Something as simple as not having the correct animal on her plate for her food that she wanted or Timmy taking something from her.  The biggest side effect we are on the lookout for right now is nausea.  So, the struggle Polly and I have is trying to decipher the code of her sometimes ear piercing screaming simply because it is nearly impossible right now to tell whether her tummy doesn't feel good due to the drugs or she is simply stating, "I am 2, people, and thus find the world extremely annoying right now for no apparent reason - WHY DON'T YOU UNDERSTAND THAT"  We try, El, we try.  We have found doing whatever it takes to keep her asleep at nap time has led to two and a half hour naps where she wakes up refreshed, smiling from ear to ear, and ready to find her next "ASO" moment.

Also on Tuesday we signed Ellie up for the Beads of Courage program through LPCH.  It basically is an accumulation over time of different color beads that get put on a long string and will serve as a reminder to her as she gets older of everything she has been through and accomplished since she was diagnosed.  Almost all nurses and staff folks in the Bass center have beads ready to give out when you earn them.  There are 18 different color beads in all.  To name a few and what they mean - beige is for bone marrow aspirations, white is for a day of chemo, blue is for a clinic visit, yellow is for days served in-patient (she has 20 yellow beads in all now), red is for receiving a transfusion, brown is for hair loss, dark green is for lumbar punctures, etc.  Since we signed up 40+ days into her treatment, we were able to tally up all of the things she has already been through and receive the beads she has earned to date - 70 total thus far including the Orange bead which she'll earn this next Tuesday for her Port insertion surgery.

Ellie goes back for a quick set of blood work labs tomorrow ahead of her port surgery on Tuesday.  She won't need to make counts for the surgery to go on but they will do weekly checks now of her cell count and platelets.  The chemo in this phase will begin to lower them substantially and the labs will determine when/if she needs a transfusion to help things along.  Tuesday's surgery has been scheduled for 7 in the morning, so we will be at LPCH by 6:15am.  Whenever they have anesthesia involved, they try to get everything done that is needed for the day (I actually think it is so great how the various departments of the hospital coordinate for this - It is what is best for Ellie and thank you GOD for this being their #1 priority when it comes to scheduling at a giant hospital).  During the surgery she will have her PICC line removed, her port put in, the 2nd of 4 lumbar punctures for this month, and her chemo injections for the day all before she wakes up.  The port will be placed in her upper chest just under her skin layer and all future chemo treatments meant to be given intravenously will go through it.

There are two chemo drugs Polly and I have to give her at home now.  One drug, so named A-RAC, is given three times a week through her PICC (soon to be Port) line relatively easily in about 3 minutes time.  The other one however, an oral medication called Mercaptopurine or 6MP for short, has proved to be difficult.  It is a highly toxic (to us) pill about the size of a Tylenol.  Given that Ellie won't be swallowing pills for some time yet, we have to conjure up a way to get it into her system and do so while she is half asleep because it must be done at night at least 2 hours removed from dinner (thus she is already asleep in bed).  The Pharmacist gave me the bottle, warned of its dangers to other folks aside of Ellie, and then said, "oh yeah its readily soluble in water, just add a couple drops, put it in a syringe, and you'll be good to go."  Umm, no.  I would classify it as SLIGHTLY soluble with small pieces going everywhere when it is either cut or crushed.  We have done four nights thus far and have tried a different technique each night to get the thing dissolved, with each technique taking about an hour, and us coming to the full conclusion that with the methods we were told to use, there is no way to get 100% of the pill into a water/cherry syrup solution or suspended enough so that there is no residue left over while standing over the crib in the dark.  You would think the pharmacy is requiring in some indirect way that every parent have a Chemistry degree to handle this?!!  (Wait a minute....)  This is the drug we will be giving once a day for two years when the Maintenance phase starts in the spring, so I need and am vowing to simplify this method....and then perhaps the pharmacist and I will have a chat.

I think we love the little victories everyday more than anything right now, be it cancer related or just watching the two of them grow.  As a teacher, I and all of my colleagues look for the little moments every day where a potential breakthrough may occur.  It can be very subtle but you just know it when it happens.  One "Ah-HA" moment often makes the day complete despite maybe 10 something difficulties that surrounded it.  With it comes confidence and justification that this moment happened for a very big reason.  We were all playing outside our front door yesterday with their glider bikes and various toys.  Ellie had gone inside for a minute while Timmy started kicking a golf ball on the pavement towards me.  He would chase it and attempt to throw it back though at this point the ball only gets to me if he throws while facing the other direction.  Out comes Ellie, grinning like the Cheshire cat, with her shiny new pink soccer ball several of the Serra Soccer players gave her (signed and everything!), promptly puts it down and places a pass with her right foot straight in my direction.  As it has barely a second to touch my foot, she yells "ASOOOOOO!"  *sigh* She's surviving, she's beautiful, and she's happy.  I hope I get another ASO moment tomorrow.