Another Game - 3yrs 9mon OT

Days, months, years going by now like passing cars.  I’ve actually made a formal request to her at dinner this past month that she stop growing.  She smiles shyly, shoots an inquisitive “is he for real?” glance to Polly, and then gives me her now too often eye roll.  It’s a look from an 8yo that shows us a glimpse of teenage years to come thus furthering my nostalgia for the impossible request in the first place.  I’ll ask again before summer is over.  Maybe she’ll give me an “OK, Daddy” wrapped with the sound of sweet innocence she has had through this entire journey to date.  In her eyes and her words, her potential has never wavered.  Life is moving forward.

Yes, I’m long overdue for a blog post.  Cannot tell you how many times I said I would resurrect it and then got caught up in the vast array of this and that as Polly and I too move forward everyday post pediatric cancer world.  This past week, we were afforded a rare luxury of an entire week away, unplugged at that, from work, school, soccer, and the daily grind.  Doesn’t happen very often but oh so nice to hit “reset” before another busy school year and coaching season goes rambling through the household.  Given the time that has passed since I wrote in this blog, and the accompanying change in mindset/outlook, I offer this post with a new title style counting years off treatment rather than days since diagnosis.  For years I was superstitious that any sort of unnecessary change to something as trivial as a blog post title would mean complacency and mockery of being alert to the fact she is in remission but could fall out at any moment.  So, this new title represents a bit of a leap of faith, I suppose.  I think we all have moved on in proper ways the past three years while still giving the fragile state of remission its commanding respect and due.  I would say our Faith, regardless of blog title nomenclature, is stronger than ever.

Ellie is 6 years and 20 days in full remission from Acute Lymphoblastic Leukemia.  She completed treatment on October 25^th, 2013.  In 84 days, she will be exactly 4 years off treatment.  AMEN.  If you have never shouted HALLELUJAH, given a fist pump that brings you off your feet, or ran to hug the nearest loved one, I want you to know the helplessness as a parent in the cancer world can easily cause uncontrollable actions of Joy with news like that.  I’m sure you know a survivor somewhere….so let em’ have it.  Ellie survives.  She does so with this uncanny focus to detail and joyous smile quite infectious to anyone who sees her and our nightmare from 2011 is thankfully, for now, in the past. AMEN.

1st Communion - March 2017

A year ago, almost to the day, I sat down and wrote a good chunk of what was supposed to be the first blog post since February of 2015.  Obviously it was never finished.  So, I’m taking in a sunset tonight on a deck overlooking a lake with my feet up, a little Ludovico, ZachSobiech, U2, and Coldplay going on to help me finish it.  I cannot guarantee there will be another to follow for a while but I give you a solid amount of material to read today.  I think the blog has served its purpose and then some for so many years.  And God willing, the good news will continue to sustain by making 6 years turn into 60.  Below is the bulk of the original post with some closing thoughts at the end from tonight.

Another Game (Aug 2016)

There is a scene that plays out over and over again in my head after witnessing it unfold firsthand last March.  We went down to Long Beach to visit my parents for spring break and let the kids enjoy a lot of the same warm sunshine and outdoor fun I grew up knowing so well.  We headed to the water on a picture perfect morning and let the kids ride their bikes on the beach path that parallels Ocean Blvd while Polly and I got some exercise and ran close behind them.  While Polly had run ahead, I was the designated one to stick near the two of them.  You would think with a 15ft or so wide bike path, a couple of 6 yard olds could steer straight and avoid oncoming bike/pedestrian traffic enough without being reminded to steer straight and avoid bike/pedestrian oncoming traffic.  But of course, both took turns proclaiming “LOOK!” to the other pointing out some key object of obvious supreme interest whilst their bicycles, unbeknownst to them but knownst to me, suddenly go perpendicular to their original trajectory and nearly wipe out four runners coming the opposite way.  And they smile after my reminders and say slyly “OK Daddy…we got it.”  They smile, while I bemoan the mass carnage that was half a second from just ensuing. 

After my half heard warning, they both then re-direct and shoot off for another spell.  This time we are alone on the path for a solid half mile.  Timmy in front with his incessant ringing of his handlebar bell and Ellie following close behind studying his motions and doing her best to keep with his path.  After a few minutes of peaceful riding without said undesired stray turning, and my now harder breathing because it is taking more of an effort to keep up, I see Ellie perk up a little higher than just before.  “Hey TIMMY, I’m going to get you!”.  She digs into her pedals with this intent that begs to be noticed.  Her extra emphasis in her “Tih” while saying “Timmy” proves it.  She picks up speed with a quick acceleration and aims to pass on his left, who partly because of wind and partly because he often rides in his own blissful la-la land has no idea she is approaching.  She overcomes and takes the lead.  Timmy, who despite he and Ellie’s moments of competition for toys or attention on occasion at home, doesn’t seem to mind the change in line leader on this day.  He is every bit joined to her in a way none of us could explain or understand.  Natural initiative at work with tear jerking ambition.  That’s my girl, 5 years now cancer free, and her brother, a survivor himself of this journey as a SIBling and key contributor to how we have somehow made it this far.

Basement gymnastic shenanigans

She, and we, have moved on to the next adventure.  Another game, if you will.  In my head, I go back to standing in the kids’ room during twilight hours one late June 2011 afternoon, a week prior to us knowing cancer was even in the building and watching her sleep for yet another strange 3 hour nap looking pale and lifeless.  Her stomach so hard that you would think we pumped her up like a basketball.  So not herself, so weak.  And now she’s got this gritty determination very becoming of her time on this earth.  Her strength right now.  It’s beyond explanation strong.

Normal life has a way of trying to return you back to those pre-diagnosis days where the grand emotion of the cancer world was nonexistent.  A place where journaling doesn’t seem necessary because we have this, this, and this to take care of today…who has time to sit down and write?  It’s interesting to me how emotions of a traumatic journey release certain abilities to cope.  My coping mechanisms have been part running my butt off 4 days a week for the past 4 years and part writing in this blog.  When the journey has slowed or bordered on same ol-same ol normal (is that possible?!), the ability to write has failed me some when I’ve wanted to do it.  The emotion is no longer raw.  But I can tell you there is still something unsettling about our pathway that creeps up from time to time.  It’s presence confirms there is no such thing as going back to pre-diagnosis days (as if we ever thought that possible anyway), which by itself is a good thing!  At the heart of the struggle is the euphoric realization that Ellie has won this battle for now….today.  BUT.  (Dammit if there isn’t always a BUT)  Within a small hidden corner of our minds, there lies the inability to celebrate with finality this survivor-ship accomplishment beyond the short term because when we take on tomorrow, the results may not and are never guaranteed to be the same.  Having reached this stage, are we done progressing?  I cannot accept that.  Progress is a must...which I must have!   Thus the dilemma of two parents moving onward, with PTSD in hand when it comes to simple things like fevers and leg pain, after being put through one helluva ringer.  It gets me thinking about how we rationalize and approach this next stage, supposedly post-cancer world.  You want to sit back, relax and proclaim victory….but that, simply put, is unequivocally impossible.

Another game.  There is always another game.  500+ soccer games I have coached in 18 years with various teams.  Countless words and attempts at motivation used in hopes that something will make a difference in a player’s head or actions while also trying as best as humanly possible to prepare them for what’s waiting for them outside those lockeroom doors.  The science teacher in me says very logically, we live in a continuum.  The realist in me says very harshly, there is no sunset we will be riding off into after we play today regardless of the result.  And the observer in me knows the emotion spent in droves on the pitch during a 90 minute pressure cooker where you are not allowed to even look off beat sideways for one second lest you will make that costly mistake….is something that is hard to get over when it is in fact over.  How do you play a game today where you have to put result behind you from yesterday and be prepared again to play an as big if not bigger match tomorrow.  A coaching challenge extraordinaire.  Opportunity lost is very painful and not in my DNA.  So we play on.  We have to.  We must.  We will find a way to make it okay if things don't go as planned.....hell, we've come this far.  Won't we?

But ironically, what I have also experienced is that opportunity resulting in enormous success can also be very….very tough to get over.  YES, you’ve won a championship, you’ll have a parade, you’ll celebrate.  Its over now.  We survived, right?  That feels good for a few days, maybe a bit longer.  But in short time that euphoric safety net also ends.

Why?

Because, we have to go to sleep and get up tomorrow to begin again.  There are lessons learned from battle cries, from tactical planning and execution, and from just surviving.  But when we are forced to return to square one and play again, is it possible to do so comfortably without looking back?  Two days into our recent vacation to the mountains north of Lake Tahoe, Ellie started a 48 hour pattern of not eating much.  It was nothing, but by hour 36, I was asking her questions searching for other symptoms.  Polly saw my look and started asking her own questions to Ellie.  After the 90 seconds of question fury, we let her go play.  Polly looks at me and asks if I was thinking relapse.  I said No…..it was a lie and Polly knew it.  She started eating normally the next day and the subject was dropped.  Wait…WHAT?  Why?  How Come? 

Such is the uneasiness of our “new” and improved world.  Back during treatment days, there was a comfort to it all through consistent progress.  Now, worrying about this stuff (eating, not eating, fever bad, fever good, and is that birthmark getting bigger???) on/off like we do lacks the reassurance of progress on treatment.  Perhaps I miss the charts and data of all the tests that I could take home and study.  (Did I really just say that???)  It’s part of who we are now and that HAS to be incorporated into our next game.  These “triggers” (like a fever) that occur once every blue moon now….are a bitch.  Leonard Cohen nails the sentiment that some days.… “It’s a cold and broken Hallelujah”. 

This is my girl...with eyes on the prize.
Menlo Horseshow - August 2017 (photo by: Gail Morey)

We’ve asked Ellie during our now every 3 month visits to LCPH for checkups if she remembers some of the rooms we stayed in or aspects of chemo like our stays at the spacious El Camino wing in Mountain View for High Dose MTX, the “sleepy” room where she would be put under for intrathecal injections.  She remembers very little.  And as our visits to LPCH get further and further apart, she starts to question how we know some of the folks who greet her as if they’ve known her for years (well, they have).  The lack of memory on her part gives Polly and I pause.  How much do we revisit and what could be if this becomes reality again?  No...no....we're not going there.

Ellie is content with short answers and a natural change of subject not even five minutes beyond her original question, thankfully.  During the summer time, Camp Okizu allows for campers to spend a small amount of time together one morning called “inspiration” to express anything they like about their cancer journey.  We asked if she has wanted to share yet in the two years she has been to camp and she politely says, “I chose not to this time”.  This “time” she speaks of.  Its hers now and her right to choose.  I hope she’ll share with us a small tidbit of what she says one day when she decides to say it.  She has earned that right.

T&E at Okizu - May 2017

I think we are all excited about her story’s reach and how it is felt in a lot of places.  She is beloved by so many people.  Her face graces the cover of several LPCH pamphlets and magazines promoting the wonderful success stories this miraculous hospital has produced.  I’ll share one poignant moment from this past school year of mine when on a four day Jr/Sr retreat, which I was an adult chaperone/leader, a student of mine was required to stand up at the end of the whole trip and tell the entire group one small thing he had learned or come to realize.  This retreat (called KAIROS) is a well known one within the Catholic school community.  It contains a curriculum that promotes finding yourself and a proper place you can do the most good in Jesus’ world as a maturing young man today on the verge of graduating high school.  I have given a talk at this retreat the past two years on “God’s Work” centering on Ellie’s story.  At the end of the four days, I get to sit back and watch the students share their own thoughts and words freely.  He walked up to the podium that night and kept his comments very brief in relation to most others.  He said that he was proud to know of a girl at age two who beat cancer and that if Ellie Panos can beat Leukemia, he can accomplish anything.  He pointed upward while he spoke with that grit and determination I witnessed on Ellie’s beach day bike ride just two weeks prior.  Pretty cool to hear.  I’ve taught some amazing kids these past 6 years at Serra...and hope to continue to "Live the 4th" as they do.

I’ve learned something about myself over the past two and a half years.  Once something is achieved, I don’t like celebrating for very long.  It becomes uncomfortable.  It is time to move forward to the next path almost immediately and keep going.  I think the layers of it all are always coming at me in various ways, through my coaching and teaching results,  my quiet time during mass, the various roads and scenery we see out on our family adventures, and the overall pursuit toward success which dictates how, where, what, and why I incessantly work the way I do.  Being on top, when we are fortunate to be there for a brief moment, comes with a weighted promise and warning that there is still more to come.  The grind, the search for a better place, the emotional struggle of trying to keep up or save something valuable is where the opportunity to absolutely thrive is found.  Embracing a grind of sorts, rather than sitting on top, seems so much easier because it feels like progress is being made rather than forever thinking we are finished.  The latter doesn't exist as far as I am concerned.

We have so many friends fighting this same pediatric cancer fight.  Since the parent community amazingly takes this approach like we are all in this together….and rightly so….there is a bit of a false hope that surfaces in me thinking everyone will end up in the same spot when we are done.  And of course that just isn’t true.  It is tough for me to be in a different spot of the journey now while others are still in the thick of it.  Some of our friends may not get here and of course we may not stay here.  It’s forever unsettling….even now 5 years later. 

What can I do? Where can I help?  Why do I get quietly cynical on occasion with outsiders who fret over trivial things?  When will patience return to offer opportunity for reflection before speaking and sounding like I have a lot more answers than I actually do?  A day after Ellie returned from her initial hospital stay following diagnosis during our Induction phase, she was asleep on the couch when visitors came by to offer a meal and words of encouragement.  Her body, exhausted from enormous amounts of chemotherapy, laid motionless downward with her head tilted slightly sideways so she could breathe.  Her arm dangling off the side of the couch with a hint of lifelessness.  All I could do at that point was listen.  Listen to words of encouragement coming from visitors and soak it in to get to the net day.  We listened good, we listened hard, and we found ways to compile everything we heard into small anecdotes to help us sleep.  I need to get back to listening more.  No words or buts or ifs or silly speculation.  Just listen.  If there is another game tomorrow, I want to be a productive part for her and all of these families we walk with.  That’s quite possibly the key to the steady progress I seek in this uncertain world after cancer.

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One year later, the post might as well have been written today.  Every word rings true.  In the time since the last official blog post in 2015 we as a family, thanks to many guardian angels, parental support, and sheer grit on the working front, bought our first home.  The twins were given a choice to have their own separate bedrooms and both emphatically said no, they wanted to continue sharing a room.  And so they remain inseparable even through screaming fights on who gets to use the bathroom sink to brush their teeth first have come about as has the debate of who wakes who up earlier than desired.  Yet the only time either child has ever asked to sleep in our room is during the one week of the year the other is at Okizu.  Go figure.  About 18 months ago, we said goodbye to our constant companion, 13 yo standard Poodle extraordinaire, Chloe who took more walks with us to help us clear our heads during treatment times than I can count.  But her passing paved the way for the kids to get a Christmas gift this past year of their very own puppy.  We now have 10 month old Maise, a labradoodle who is a third of the size of Chloe but just as bouncy and an opportunity for all of us to have a new beginning. 

Both kids begin third grade very soon.  We struggle on occasion with being overly scheduled, nightly homework both are too tired to do, the endless question on what’s for dinner and what needs to be done for kids lunches the next day.  Timmy has taken to cub scouts and learning the piano while Ellie does soccer and has a growing passion for gymnastics.  Both are now accomplished horse riders thanks to Polly and her mom.  With the bumps in the road that come, there is always this dismissive feeling of “Well, it isn’t cancer, so….”.  But I’m not sure that’s fair to keep saying and I don’t like that I do sometimes.  Bumps require listening and legitly deserve attention even if cancer isn't in the building.  We have progress to make in other areas of this next chapter and I suppose this is the new grind to embrace, climb, and dream of conquering.  Both kids will have more growing pains.  Despite the last few years, I am finding I am not an expert on a lot of kid growing up things (not shocking).  So believe me when I say we have been through a lot but have just as much to learn as you might think you do on the parenting front.  Walk with us?  I’ll try to remember to listen J

The future date of October 25^th, 2018, should we make it that far with this remission business, Ellie will be placed into what is considered the “Statistically cured” grouping with a 99.9% chance of staying in remission from her leukemia for life.  Will we celebrate that day?  You bet your tired blog reading eyes we will.  And two days later, I’ll go back to the same ever so slight uneasiness that we have become accustomed to where we know tomorrow may come with a different result.  It’s just how it goes.  We live to play another day for now and that’s all I've ever been able to ask for.

Much Love ~ Polly n' Jeff

P.S.  Bucket List Item upcoming (!!!) - Coldplay is in town on October 4th....we goin'!  And we're bringing a big ol' LOVE4ELLIE sign to dance with.