Passion - Day 284

I had the pleasure of listening to two very poignant messages earlier this week ahead of Easter Sunday this coming weekend.  Many things I hear on a regular basis take on an initial shape in that moment, yet I'm not sure you can ever close the door for exploring the thoughts provoked from the message so to get a deeper understanding.  There is usually a need (at least for me) to do some reflecting on what was said after the fact and on occasion I may be seeking something that just isn't there.  Not so this time.  On Monday we had a visit to Serra by our Congress Rep, Jackie Speier.  She spoke very candidly to our audience of about 500 Jr and Sr students.  I am not into politics at all, never really have been, and have to admit I knew her in name only.  I don't really know what she stands for in Washington (though maybe I should) but she gained my respect instantly for sharing her incredible story.  From her presence during the Jonestown massacre to losing a child to near financial ruin to later losing her husband in a car accident.....ho-ly smokes.  I had no idea.  What was remarkable on this day is that she wasn't going to sing her own praises or push an agenda, she simply wanted to deliver a message that Life ahead of many of these young men can be looked at with a certain path in mind....but don't expect it to go as you planned every step of the way.  How far ahead do we need to plan when there is so much going on before our eyes right now?  Even long before I heard her speak this past week, I do think about a lot of the things I "think" I want down the road...and find myself questioning some of its relevance all the time now.  But its amazing (and kinda cool) when you hear someone speak about their own story at a particular time in your own world that parallels that very thought completely.  The one conclusion I always pray for from this fairly vague and sometimes tiring thought process, if there is in fact to be a finality to it, is simply that I am able to muster all the strength needed (and then some!) for what's in front of me every single day and feel at complete peace that "what's next" will just take care of itself.  Please - JUST take care of itself.

We officially started Ellie's Long Term Maintenance (LTM) phase of treatment a week ago today.  Her ANC count jumped nearly 600 points between lab visits and she qualified the day prior with flying colors.  Now, we have been told Maintenance offers a better dose of "normal".  This is a relative term and believe me I have to catch myself from thinking too big on this front.  On day 1 of LTM, she underwent an LP procedure for chemo in her spine and got an IV push of Vincristine.  We began her nightly doses of 6MP as well which is old hat for us now after doing it all of Consolidation and DI.  The hard part about 6MP is that we have to really keep her on a strict time schedule for dinner because the 6MP cannot be taken on a full stomach nor with any dairy or citrus in her system so that the drug has 100% effectiveness in being absorbed by her body (Milk gets in the way of that).  She also cannot go to sleep until the drug has been in her system for 30 minutes because I am guessing her energy production required to absorb the drug is obviously higher when she is awake.  So, with the time parameters, it means she has to eat by around 5pm, take her meds about 7 and then go to bed by 7:30pm.  It's a little easier than it sounds, but puts a bit of a damper on evening activities if others are eating around her after 5:30.

In addition to the Day 1 drugs she got, we also started a fairly miserable 5 day course of steroids.  Once a month for the next year and a half she'll do five days of twice a day Prednisone.  I was hoping to do my best impression of an Ostrich and pretend this is a far different drug than the DEX from Induction and DI.  Uhhh - no.  It's not.  In fact at least the DEX gave us a courtesy day to ease her into her pain.  No, the Prednisone pretty much possessed her within hours.  We had our usually learning curve of figuring out what would best mask the horrific taste of the drug and finally by day 3 found our groove with just a whole lot of cherry syrup in a syringe (a magical thing this cherry syrup - seriously....we might be able to fuel our cars with it one day).  The bright spot is that the effects left her as fast as they came on once the final dose was given and by Wednesday afternoon this week, she was back to smiling and running.  It was a far cry from her doubled over limp self from Monday and Tuesday night that just pulls at your patience for this process.  So, our supposed more "normal" life will not be for all 30 days of every month it seems, but don't get me wrong we are in better times by far than we were say 6-7 months ago.  Again, its all relative.

On another note, we have seemingly conquered something without hardly any parental involvement.  I write tonight still in awe of how this all panned out and am pinching myself to make sure I am not dreaming.  For once, this was EASY.  Both twins decided a little less than two weeks ago (just after my last post) upong waking one morning well before the planned "D-Day"....that they were done with diapers.  There really was no "training" ever needed in potty training.  No, I speak the truth!  Its absolutely remarkable.  They get up, do their thing, and come back to play.  Here I had a power point, graphs/charts, and several homework assignments ready to present to them over what was sure to be a 3 week dissertation and they would have none of it.  They have conquered small potties, big potties, public potties, and car potties.  They ask for nothing more than a a single M&M in return.  WOW.  And so, I have not changed a diaper apart from the one that goes on at bed time for over a week and a half and it wasn't on the calendar to be this way.   Again - WOW.  They push each other to do similar things all the time....which I think is key here.  What a relief and liberating thing it has become for Polly and I.  I suppose for El this is nothing compared to ingesting and purging toxic chemicals every week....but I still stand here wondering what in the heck just happened?!  Done with Diapers.  I don't think I'll ever get tired of saying that.

Speaking of spring break, mine of about 12 days started yesterday.  We packed up the car and headed over to Half Moon bay to visit Polly's horse, Sarah, who just gave birth to a new foal which T&E decided to name "April".  I know there are some who read this blog that don't know Polly very well, but for many years she has been an incredibly accomplished rider in the top Amateur-Owner Hunter classes of the NorCal Equestrian circuit (ok, so I brag...)  Her Filly, Sarah, does some pretty remarkable things and provided numerous opportunities for Polly to do what she loves to do.  As hard as it has been for Polly to see Sarah retire from showing at that level a little earlier than expected, we were blessed and fortunate to have successfully bred her.  And so, last week "April" was born.....quite possibly a horse years from now you may see Ellie leaping fences over like her mom did with April's mom for so many years.  HOPE has a way of showing itself in so many unexpected ways.  It was a pretty momentous meeting yesterday, so had to share a favorite picture or two of ours to mark the occasion:

And one more because this is my favorite picture of Polly and Sarah a few years back making it all look too easy...

Its going to take some time to get used to this monthly routine of LTM as have all of the other phases, I know that.  Her counts have remained high which is great and explains her seemingly endless amounts of energy.  But next week we'll find out if we'll need to adjust the dosing downward a bit if they fall below the neutropenic line.  The goal in the protocol at this point is to NOT adjust the dose downward from 100% of all chemo.  It is part of what the doc says to expect, but impossible to predict because every kid is different.  The post steroid days will bring me some uneasiness because it often artificially inflates her white blood cell count and bloats her belly out a bit.....both relatively nothing to worry about but also both triggers subconsciously to me of signs from her diagnosis.  Can't even begin to explain how much I hate that trigger when it happens.  On a lighter note, we are seeing sprouts of new hair starting to pop up on Ellie's head and that in of itself is worth a Dance of Joy - Click HERE  :)

The second message heard this past week came from another one of Father Joe's great Homilies during our school mass on Tuesday celebrating Holy Week.  This is such a great week for empowerment of faith that always sneaks up on us in the academic setting because we're all busily moving from class to class dealing with issues left and right all with one eye closely on that anticipated spring break start date that it is great to have this Tuesday mass for a perspective check.  His words centered around the story of Judas and that within Judas' betrayal of Jesus was also quite possibly a betrayal of himself.  I'm not a bible scholar but after thinking about it for a few days (there again is the need to invite questions to the table for a better understanding of what this world is about), I know you can take this betrayal of thy self in a number of different directions.  It certainly isn't my place to say one path is correct and the other is not.....that's not the point.  But, what I took away from his words is that Judas simply lost sight of any remnants of Faith.  It goes unseen by almost everyone around you but its the ability to pick yourself up by the boot straps again and again and again that keeps Faith running through you like a full bodied river we'd all like to sit and just drift on without much worry for "what's next".  Seeking that level of Faith is a passion which is impossible to ignore.  I turn 36 tomorrow and know whole heartedly that I still have an incredible amount to learn before I can drift care free.  But being able to find opportunity each day, be it in chasing them around the kitchen in T&E's version of Hide and Seek (where hiding is a relative term for just ducking in place) or sprinting to their room during nap time when Timmy is about to scale the crib wall and flying-elbow-drop himself into Ellie's crib to her sheer delight RATHER than go to sleep, is the chance to share tiny bits of passion at a time. In doing so, I find too much good stuff going on every day to ever lose Faith completely....especially when our family path turns unexpectedly for better or for worse.  Polly said it best tonight when we were talking about something completely different - When we get there, I know it will take care of itself.

Hope you have a Wonderful Easter Sunday.