Pathways - Day 1328

The Franklin St park n' ride bus stop is going to be forever one of my biggest life crossroads.  Cargo shorts, slightly faded Adidas Gazelles, and my brand new ipod "mini" complete with earbuds peaking out from under the neck of my shirt (because that's just what you do).  I could have taken a shower every 10 steps both prior to arriving at that bus stop and during the half mile walk on the other end to class and I would still be drenched with sweat upon my arrival.  My Ludivico Einaudi of a year ago and my Gregorio Allegri of right now was my Green Day of summer 2005.  "When September Ends".  Over and over...and over again....while I reflected on one big 12 month journey through grad school.  The ten minute bus ride to campus gave me a bit of nostalgia to simpler times.  Way back to the 6+ mile bus ride to Poly High School my freshman and sophomore years.  I also don't think I had fully grasped the change ongoing.  I had quit my job.  I gave up all four coaching endeavors for the time being.  And I somehow convinced this amazing companion of mine (Let's call her "Polly"), who I had just met in earnest 8 months ago, to move east with me.  North Carolina summers are something else.  A cross country road trip, an introduction to Bojangles biscuits, and the search for truth from a new teacher's perspective using a full slate of 12 hour days worth of intense classes, essays, and second guessing.  It was a pathway of exciting, yet uneasy, yet thought provoking fresh air.  How did I get here?  Let's take a chance.  Let's do it.

Ellie's cancer world has often pinned my head sideways into the wall and held it there just painfully long enough to know fear can be ever present if it is allowed to do so.  My senses have hardened as a result and this plight shows itself in an overwhelming fashion that I must tackle these Me vs the World challenges at every turn on many days.  Even now, 16 months off treatment, where her blood work has become so routinely good that we don't even see the oncologist or nurse practitioner regularly.  They say, "oh, we'll call you if we see anything"  Great.  Please do that.  I won't be waiting by the phone.  Actually NO.  Don't call.  Don't ever call.  We're good now.  Right?!  Don't call.  Let me keep on this path.  Don't call.

I still feel like there is a burden to bear of a battle to be had somewhere and perhaps every where on a daily basis.  I don't know if that is a bad thing.  It could be.  The World wins a lot and it tires me totally and completely on some days.  I have accepted it is what it is.  I fight the good fight in any given soccer game from my uncomfy stance on the sideline rocking back and forth shifting my weight between each foot for equal increments of time.  Game results inevitably turn into a virtual inner soliloquy of "If we could have just...what if we tried to.....If we hadn't done this....next time we without a doubt will have to..."  The transcript of a match will ultimately lead to the next step despite the World playing a bit unfair sometimes.  I hate losing.  The World's dominant presence in the Bay Area real estate market is an unfortunate example.  We sold our condo in a lightning quick 11 days last September and began what is now a house hunt entering its seventh month.  Complete pest infested, tear down homes are above 900K.  Asking prices are a sly game to generate interest that incite unreal bidding wars.  Our fifth house of choice to put an offer in on during our 7 month journey (just last week) garnered 30 other offers of which we were found to be 6th by price....and the home sold for 400K over asking.  HOLY SH*T.  The World likes to win.  (Look Ma!  We made the Top Ten!!!  Whooooo.....yes, I smell sarcasm there too)  Ahhhhhh, I want what any father wants I suppose.  3 Bed/2 Bath and a deserved space where T & E can grow up.  I KNOW, I KNOW.  He deserves it as much as I do, I know that.  I do wonder if he fears the phone ringing like I do...and if he has no idea what I am talking about, perhaps he could back off on his last 40K and let me have the half fixer upper in the quiet neighborhood at my max price?!  But I also am fully aware that's not likely his path.  We survived 3 years of chemotherapy, we can survive a 7th month of house hunting, perhaps an 8th too.  :)  We crave 'easy' but I think we thrive more with hard.  Or at least shape our next chosen path from picking up the pieces.

One of the first people I met when I moved to the Bay Area in 1998 after my days at UCLA were complete was a fellow soccer coach named Wes Marks.  After our first season of coaching teams in different age groups, we were asked to do a team together the following spring and then never really separated after that.  He was a neighborhood guy.  Here I was trying to get my career going and earn money for ME because I was so emphatic on how nice it was to NOT be living off of $600 per month in college (ok, real talk now....I still cherish my budget is a wee bit higher now) and Wes just kept talking about making an impact for the sake of the community.  He opened a local pizza place where teams could hang their pictures on the wall, play a couple games of pinball, and run around the joint while still in full regalia of shin guards, soccer cleats, and half muddy socks.  He saw us a stewards tasked with not only building that environment with our team but enriching it.  Our crowning moment.....was a game for the ages.  After 150+ High School Varsity soccer victories in 17 years and a handful of combined CIF based league/section titles wedged in there somewhere, I will tell you unequivocally, this little U14 AYSO tournament game will forever be a top career highlight.  My path from college kid to aspiring adult went through the Miller School field that day.

It was a 0-0 game at half.  Every kid had to play three quarters, per rules.  Fine, we got this.  We sacrificed our third quarter lineup in hopes we could hold them off and then drop the proverbial hammer in the 4th with the return of several key players from their quarter off.  (Since when do we play quarters in soccer anyways????  What?!?! oh nevermind...)  Our twin towers, can't for the life of me remember their last names, but first names were Henry and Ryan.  Both kids found the net with dramatic goals in the game's final 10 minutes of play.  The final whistle sounded and Parents started leaping into the air like Mary Lou had just hit a perfect 10 for the first time in history.  Babies were being thrown and here I had thought the 1996 UCLA double OT victory against u$c was the greatest game of my life to date?!  Kidding about the babies, of course, but yes in that moment, Wes and I were part of something very special.  I remember that like it were yesterday, now 15 years later.

After the game was over, Wes and I did what any championship coaches do to celebrate....we went to the pub. HA!  He was never much of a touchy feely kinda guy around me.  That's fine, of course, because men don't hug.....or so was the case when I was 23.  We had our pint and went over the play by play still in disbelief of how it played out.  He told me the architecture of the substitution plan was all me.  Perhaps, but he was the firm yet nurturing voice that let the weaker players feel good about their contribution while they sat the fourth quarter.  As we left the pub, we said good bye and he gave me a hug.  How did I get here?  I don't know but that day was a good day.

We would go silent with one another over the summers in between seasons.  I was working and coaching at higher levels and he had his restaurant.  He joined me for a couple years during my first high school Varsity stint at Cupertino in 2002 but it was getting tougher to hang out with life getting busier.  In July of 2004, he called me on the phone while I was driving south on Hwy 280 through Sunnyvale and Cupertino.  We hadn't spoken in a while.  I wanted to know if he was up for returning for a fourth season next winter, it was time to start getting some planning going, etc.  We talked business for a few seconds, but as is my silly custom, I was rushing off to some evening meeting.  We agreed to meet the next day for lunch and chat some more about the coaching stuff.  He was always unsure if he wanted to do another season.  He'd been saying it for the past three years....haha....I just needed to convince him.  We'd talk tomorrow.  I was a split second from hanging up the phone and he says "Well wait a minute..."  I was 100 yards from the De Anza Blvd Exit, where the Apple Computer empire stands today.  "How are you?  I mean apart from soccer?"  Caught me a bit off guard.  The guy who doesn't like to hug.  I'm good, Wes.  Things are going really well.  How are YOU?  Are you still enjoying yourself?  He told me the restaurant way of life might be ending soon.  He was possibly ready for something else and gave me a 90 second version of his plan to buy some land outside of California.  We would talk tomorrow, we were going to meet for lunch.

Tomorrow came and I wish to God it never had.  Why did I not stay on the phone longer?  Screw the stupid meeting.  No, unfortunately, the phone rang the next day. I was in my company's windowless lab as I had been for five years to that point working at my liquid chromatograph generating data for who knows what reason.  Certainly nothing important.  The caller asked if I had heard or seen Wes today.  No, I am meeting him later for lunch.  Something's happened.  What?  WHAT?  I call his cell phone.  No answer.  I head to his restaurant about as fast as I had driven in my life.  My path was starting to change.  There is a note on the door.  Call his brother.  I drove to the post office parking lot nearby, parked and called.  Hey, its Jeff, where's Wes....we are supposed to have lunch?  Heart defect, aortic tear, aneurysm, blah blah blah.  I don't remember anything after those first few words.  No No No NO NO NO NO.  Wes was gone.  34 years old and gone.  How did I get here?

7 months later during the subsequent season at Cupertino HS, we won the first league title for the school's soccer program in 16 years.  One particular game against Los Altos at our field was late in the season.  It wasn't a title deciding game but it typified the magic in the atmosphere that year.  We were tied 1-1 and pushing for a win against a team who was much better than us that day.  A driven ball from my midfielder 45 yards out caught a gust of wind, sailed over the keeper's head, dipped and then bounced into the goal to seal a very unlikely 2-1 win in the last few minutes.  My good friend was there that day and it was time for me to move on.  I said goodbye to my 5 year pharmaceutical startup company job two months later, put my acceptance letters to Stanford and Univ of North Carolina Teaching Master's programs side by side and convinced my girlfriend Polly it was time to try something new and head east for an adventure.  And she and I officially started our new path of taking on the World together.  

We celebrated our 8th Wedding Anniversary last weekend with a getaway of sorts over the hill to Half Moon Bay.  A driving rainstorm the entire time we were there, ironically alot like our wedding day in 2007 on the top of Nob Hill in the city.  That's good luck, right?!  The World may win more than we do, but I've never stopped being thankful for the path that took me to her and the continued struggles we face with the privilege of doing it together.  I owe much of that to the lessons Wes taught me.  Thank you, my friend.  There aren't many weeks that go by where I don't think of how you helped bring me to this path today.

And I've learned a restless heart is not to be ignored.  In Mass a couple weeks ago, I listened to a Seminarian tell us the story of how he gave up all his worldly possessions, left his girlfriend, and committed himself to the priesthood....all because he could not escape a restless heart.  As if the dude was put in that church on that very day just for me to hear those very words.  No no, 'm not heading to the cloth.  But it eases the tension and fear of an unknown tomorrow.  You want to pin my head against the wall and hold it there, you go ahead and try.  Tell me I can't do it.  Go ahead.  

I'm still really at that bus stop, going somewhere.  The music blaring in my ears makes the surroundings tolerable.  We are products of choices we make on the paths we know not how we got on in the first place.....except perhaps from a simple but persistent restless heartbeat.  

Ellie is all smiles right now.  She and Timmy ride horses twice a week, play beginning keyboard, shoot baskets outside, still have these elaborate schemes with dolls and pretend trips to various locations around the house.  Timmy puts full lego sets for 10 year olds together entirely on his own.  The little dude is a 5 year old engineering genius....who fancies himself most when given the opportunity to dress up in his construction worker outfit, goggle and all. Tomorrow, the three of us will venture to the soccer field and start their next five week long Sunday clinics.  I will say nothing but sit and watch them work with their own coaches.  I'm bringing my ipod and earbuds and I will ponder post cancer treatment parent life - How did I get here?  We're gonna get that house....and I'm going to keep trying to convince myself life's path is smoother when the phone is unplugged altogether.  Let's take a chance.  Let's do it.

#love4ellie

-------

P.S.  Polly and I finally brought ourselves to watch the Series Finale on demand of our beloved show "Parenthood" tonight, knowing full well it would cause some tears.  And it did.  The various plots over six seasons have had a funny way of intertwining with our own lives.  Go Figure.  In the end tonight, the dichotomy of life and death found its way to be present for the Braverman Family as they uneasily said goodbye to their patriarch (Carig T Nelson's character) while breathing fresh air on a baseball field with the entire family together, supposedly in San Francisco.  In the midst of the final couple music montages was a Sara Watkins song that spoke to me.

For You, Wes.

"You and Me"

by Sara Watkins

I remember the night

I remember the sound

I remember the light

When the moon came 'round

The night flowers bloomed

The air so sweet

I remember you

I remember me

Central Valley sunshine

Run out of town

Make your head all funny

So you stick around

Dusty roads

Make dirty feet

I remember you

I remember me

I remember the night

I remember the sound

I remember the light

When the moon came 'round

The night flowers bloomed

The air so sweet

I remember you

I remember me

Wish I knew you now

Like I knew you then

For hours I just sit at your feet

And listen

When I want

To feel free

I remember you

I remember me

I remember the night

I remember the sound

I remember the light

When the moon came 'round

The night flowers bloomed

The air so sweet

I remember you

I remember me

Shepherd - Day 1237

"The Lord is My Shepherd...there is nothing I shall want"

~~ Psalm 23 ~~

I have been thinking about this particular verse for a couple weeks now.  You get to a point some days where things are rolling.  I mean going good enough where it feels possible to take in every color, scent, taste, and meaning from the day.  You know....because I have supposedly mastered this by now.  No big deal.  I can cruise around in the truck with the window down and tunes up to a slighly obnoxious volume.  Fist raised and pumping ever so appropriately to the beat in between sudden bursts of joy as I sit at a stop light with quick glances at my fellow red light neighbor who should be singing too if he knew what was good for him.  "SHEPHERD!!!!!!!"  Oh yeah....seizing the moment now.  "NOTHING I shall WANT, PEOPLE".  The light turns green with now a slight horizontal rocking taking place within the torso of the vehicle where I have been known to attempt several dangerously rad 90's dance manuevers whilst still in the confines of my car seat.  Another glance at my brother by traffic light..."CAN I GET AN AMEN???".  Not to worry I answer my own questions in the affirmative in scenes like these.  Instantly it dawns on me that I should be taking my talents to "The Voice"...but we'll save that for another blog post.  No need for outside interference.  I am rockin and requesting a ghostrider tower fly by.  I am in the zone.

Change scenes now.  4am, Sunday morning, so many days later.  Really it could be a few or a few hundred....does it really matter?  Ellie is screaming.  Her stomach has hurt since Wednesday.  The doc said yesterday at Urgent care it was "just a virus" (god, I hate that response from the medical world).  But here we are this moment with uncontrollable pain and now intermittent vomitting.  She says her leg hurts. What?!  No fever, thankfully....but zero appetite and no energy.  No other symptoms, but she cant keep food down and she can't sleep.  Do we sit here idle and wait for it to pass even though it is Day 5 and getting worse? It's just a virus.  (No it isn't....I can't believe I am blogging even fake saying that....STOP TELLING US IT IS JUST A VIRUS)  We haven't had an ER trip since May, things have been good.  So why now???  What is changing???  Its 4am and we need jackets, shoes, backpack, ipad, charger, maybe some food.  Do we need food?  We won't be there long will we?  (oh come on, Jeff, when have we ever gotten out of there under five hours??  Ok, true, now stop interupting and let me finish the story.  FINE.  Fine.)  Let's ask for a CBC test, just in case.  Why?  I don't know but maybe it will rule some things out.  Cancer?  No....YES.  OK.  I'll turn the car on, you buckle her.  Maybe its her appendix?  She keeps clutching in the same area over and over again.  But the leg pain????  No fever, remember that.  She just had her one year OT blood work two weeks ago....it was awesome.  I know.  If they tell me its her appendix I'll be relieved.  Definately demanding the CBC.  ok, lets just go.  We went.

The pit in my stomach that is never too far away after being so close for 3+ years reappeard (go figure) and nestled nicely in the middle of my gut in the sprint down the Portola Valley Hill.  And I realized I had to make a confession.

God....very sorry but....there's something I Want.

Such is my ongoing debate internally.  Fortunately, the big difference now is that we are going 6 months between ER visits instead of 6 days.  There are alot more truck torso rockin' days than freak out moments with the more favorable time in between.  Look, I don't doubt the bigger picture.  I get a little impatient but Faith has guided us this far and it will ease rough spots again.  But letting go of "want" and the corresponding feelings of anger and frustration that spin out from that struggle is not a battle I know how to attack very well.  I want her to have normal colds when/if she has to get sick.  I want her to not see any late chemo effects take over her movements or mannerisms.  I want her opportunities to be equal to those of her peers.  I want her to not think being stuck in the arm for blood draws is something everyone does this often (Wish you could see her....she stoically doesn't bat one eye lash when the needle goes in.  I think I cried about shots until I was 15).  I want her to always have this innocent belief that nothing truly is wrong once the band aid goes on.  I want.  I want.  That's not supposed to be the deal.  I should not want.  I should just be.

I have found my answer to a centering prayer recently in something tangible I can do without much effort.  Deacon Tom turned me on to this little Podcast put out by a Jesuit group in the UK called "Pray as you go".  It is a ~12 min daily podcast I can listen to on my commute to work.  I've been digging it.  Maybe everyone has known of this for quite sometime...but the discovery for Polly and I has been a good one.   I am OKAY with not getting answers all the time.  But the process of working through things for me usually involves asking questions derived from other questions and to be able to do that every morning with a guide, so to speak, has been helpful.  I am trying to simplify.

I finally sat down and watched the "Fault in our Stars" movie a week or so ago after reading the book cover to cover in about 4 days last May.  John Green is nothing shy of a genius in paiting an authentic picture of two cancer stricken teenagers who search for truth depsite an inevitable ending coming their way.  "Pain demands to be Felt" he has a character mention on more than one occasion.  True that.  And it could be the starting point of an evolving understanding of what my, or our, purpose is right now.  Things just never go according to plan.  They probably shouldn't.  Green's main character (Hazel Grace) then throws a reader like me a bone and says "The only thing worse than biting it from cancer is having a kid bit it from cancer".  Ok, stop it, you had me at "Hello".  haha  I actually throughly enjoyed the book because it asked questions about surrounding circumstances in a way that I would...or am doing.  How can I fully surrender to my Faith and be OK with whatever happens next?  What will I need to do?  It hasn't let me down yet, but does that always mean a positive outcome?  I gotta stop thinking so much.  You must think I am a wee bit crazy.  :)

Ellie's stint at the ER this past weekend yielded a crazy three day set of scans, blood draws, and more doctors pushing on her poor tummy than I can count.  I always forget there are readers of this blog who are not on facebook with us and don't know this all happened, so I will try to summarize here.  After two different doctors said exact opposite things about it possibly being appendicitus (which it wasn't), we were beyond fortunate to be seen by one of our old oncology docs way back from diagnosis who finally agreed that our parental suspicions were correct.  About a year and a half ago, she developed a condition called Gasteroparesis which is where the nerve in her stomach that allows food to flow out into her intestines gets irritated/temporarily damaged.  Everything in her food movement stops.  The condition came about as a combo result of the her monthly injections of Vincristine, a very constipating chemo drug, and her having a virus that threw her fragile immune system out of whack.  Ironically, the solution is very simple.  Eurythromiacin, a common antibiotic, is used not to fight any infection, but rather for its side effect of getting stomach motility going.  Polly and I know the signs now very well.  The problem is that most docs don't think that is a plausible answer until they run all of these tests and rule out everything else....test take time....time that passes while she is still miserably in pain.  We were sent home with no answers on two occaisons and all we wanted was the damn antibiotic.  How can I be calm when she suffers?  How can I not want?

Prayers were answered on Tuesday following Sunday in the ER and within 24 hours of her first eurythro dose, she was back to normal.  Phew.  Stomach pain, leg pain, loss of appetite....all appear on the relapse symptoms list, which I wasnt as worried about because there was no fever....but COME ON...my mind goes there.  Didn't help that we were put into pediatric ER room #6 upon our arrival.  The exact same room we were in on diagnosis day in 2011.  And I got to see my old Apple computer friend attached to the wall where I first looked up the phrase "Types of Leukemia in Children".  The irony ends there.  The frantic nature of leaving the house that morning was slowing and we were settled into just getting some answers because experience told us this was solvable.  Funny too because once the nurses know she had leukemia, we as parents are suddenly treated a bit more like nurse collegues, if that makes sense.  We start talking WBCs and Hemoglobin and ANC values.  It is nice ot have that on nights when the panic button is close to being pressed.  Worried yes, but beside ourselves, no.  That room no longer scares me.  We were being watched over now.  That sounds a little strange, but it has taken us 3+ years to get here and we are better people for it.  Perhaps because I want less now than I did prior to this whole childhood cancer world???  If that is in fact true, then we have progress even though I still complain a bit and want a few things (ok, alot of things).  It'll be like that for sometime....and I'd just like to keep asking more questions if that's ok?

"Apparently, the World is not a Wish granting factory"

~ Augustus Waiters ~
Osteosarcoma patient & John Green character extraordinare

You celebrate the little victories in this world, no matter when they are, so here is Ellie's first annual off treatment picture from three weeks ago.  1237 days into this fight and she has been cancer free for over 97% of them and we aim to keep it tha way.  WOW!  The Lord is my Shepherd...

Thanks Be to God for our Ellie Belle.

Jumping Rope - Day 1193

Before Ellie’s diagnosis at age 2, she and Timmy were pretty evenly paced with all things physical.  He crawled a week before her, he walked 2 weeks before her but she quickly caught up each time.  After her diagnosis and during her entire 2 ½ year treatment her muscles were weak and most of the time she could not physically keep up with him.  One of the things she longed to do was jump. I have vivid memories of her trying to jump in place as a 2 ½ year old and giving me a big smile each time she tried, and all she could do was raise on to her toes meanwhile Timmy was jumping over everything.  As is Ellie’s way it never seemed to her phase her that she couldn’t do it, she just kept trying.

A couple of weeks ago I stopped by their school at lunch to drop something off, and after the initial excitement of seeing me at school, she grabbed my hand and took me over to where the other kids were playing jump rope.  She wanted to show me she could jump rope too.  She stood in line and watched the other kids, many who could do multiple jumps in a row.  When it was her turn she looked at me with a smile as she made it over the jump rope one time and then promptly walked to the back of the line so she could try again next time to make it “two jumps” as she told me.   

We are at a wonderful new school where most people don’t know her story or what she has been through, so to see her jumping rope with the other kids is really nothing special, but for me on that afternoon it warmed my heart to watch her.  Life “off treatment” is truly wonderful.  Anytime I start to feel like the weekly grind of school, lunches, homework is getting old, I stop and remember what it was like just a short time ago.  We are so lucky to be here with her now.  We are approaching Ellie’s one-year off treatment date at the end of October and we are filled with gratitude.  I will leave you with a picture snapped just this morning as we left for school, while of course I’m biased, I think her smile never gets old.  El-Belle keep on smiling and jumping rope!

- Polly

Adventure - Day 1144

"Like all energy, we can only change shapes and sizes and manifestations.  They forget that when they get old.  They get scared of losing and failing.  But that part of us greater than the sum of our parts cannot end, and so it cannot fail."

~ Pudge Halter (character from John Green's "Looking for Alaska")

Be Here Now.  A consistent mantra during my many days (now years?!) at Serra and one I was reminded of today on our first day back for the upcoming school year.  Be Here Now.  So much going on this summer with just about everything personally and professionally that I have not done my outlet here on this blog justice.  No, I don't have to answer to to anyone about it....and there is not hard or fast rule that said blog must be kept up with a set interval not to be exceeded.  But I have often said the healthy factor that comes along with connecting thoughts from our daily ongoings is a necessary release to keep the process of working through this journey going smoothly.  Connected thoughts for me represent clarity to the constant back and forth struggle with simply not knowing what's next.  Our path here, often walked side by side with so many wonderful other families and children facing similar battles, and yet sometimes crawled eerily alone is not one that will ever end.  We are in it to win it, but an ultimate confirmation of an end result does not exist.  So, we look to the adventures along the way as our guide and try to follow the new normal as best we can.

Its been quite while since I've been here, so forgive me this will be a long one...  :)  #sorrynotsorry  I promise pics!!!

Free of treatment plans, doctors, guidelines for an immunosuppressed state, and free of school after this past June 1st....we set out on one heck of a summer adventure.  Ellie has now fully regained her ability to fight normal colds and flu bugs and so the sky's the limit to activities.  Just watching her vibrant style of enthusiasm is infectious.  Neither her nor Timmy is shy of energy these days with the most elaborate schemes being played out in location they choose to plop down and play.  With summer horse riding lessons in full swing, both gleefully come home and immediately role play the adults who have helped them at the barn during their lesson.  They grab our dog, Chloe, or "Gigi's" (Polly's mom) dog Lilly, attached the leash and begin demanding they pick up the trot and jump the "X" on the kitchen floor (conveniently made up of a pillow and cooking utensils).  After a quick canine lunging session, Polly or I often have to rescue the poor dogs before someone gets overly annoyed.  The game can then turn to "School" where a pre-K circle time is re-enacted with exquisite detail or "House" where all Dolls within reach must be fed, changed, and put to bed (One thing I never get is why all of them get put to sleep with blankets completely covering their whole bodies.  The kids say its proper technique.  All I can think of is a giant morgue.  But that is neither here nor there....whatever the hell that means. ha).  Needless to say their creative flow is at an all time high.  The daily adventures in the living room have their moments where one wants what the other has and we get a little skirmish, but for the most part the ability to overcome, advance, and leave it all in the rear view mirror is stronger with a pair of fiver year olds than any other age human being I know.  Both will begin Kindergarten in exactly one week's time.  A day I never thought we would see three summers ago.

All good things come in threes, yes?!  Most Definitely.

Summer Adventure #1 - Maui.  We were blessed beyond measure when we became friends with Jim and Marti years ago.  Their offer and hopeful promise to allow us time with them at their annual destination in Kaanapali during the first possible June following the end of Ellie's treatment was like an eager excitement to look forward to all of last school year.  This was the trip for friends, food, and carefree fun.  Sometimes you just have to stare off toward the horizon and think.  Coach Jimmy V's words to do such a thing everyday have created an expectation for myself to allow random thoughts to flow daily within a very personal space during these moments of mindless gazing.  Maui could possibly be the the perfect place for such things.  The stresses of the school year just ended were easily forgotten and as a result time slowed down for a week.  Be Here Now.  I think the concentrated time of play, between the ocean and pool....back and forth again and again, mix in a few Mai Tais of course, there is ample opportunity to grasp how much Ellie has come out of her three year long chemo induced state.  We are not STUCK any longer and is it okay to enjoy this for an extended period of time (well beyond Maui)?  Or maybe after watching her ecstatically swim with a sea turtle or get shaved ice all over her face or plead with me to let her go down the "big" water slide for the 50th time....this growing feeling that started in Maui was becoming tangible on an adventure at long last without restrictions - so can we put our guard down already?

There is no answer to that question.  There are interpretations until the cows come home, but it cannot be answered.  So, to combat that inevitable truth, I kept to what I've come to know as the best method for attacking our time.  We go day by day.  We talk, we come to new understandings, and we never stop asking more questions.  Marti and Jim know how to have a heartfelt conversation where listening is put as a top priority.  Sometimes words need to be heard and not answered.  I was able to see my son and daughter dance in the waves during a God-given sunset for the ages and I was fortunate enough to snap a quick picture to remember it by.  Jim and Marti - my thanks for what you have done for us with Maui but more importantly the many months prior is something that goes far beyond what words can explain.  We put our guard down for the 10 days in Hawaii and lived the life.

Summer Adventure #2 - Disney World.  Our wonderful social worker had reminded us last summer that Ellie was eligible for a "Wish" from the incredible organization Make-A-Wish (Greater Bay Area).  The only caveat was that she had to get the process going before Ellie ended treatment or she would not be able to make it happen.  So, we took the steps last winter and were visited by two MAW volunteers who asked Ellie if there was anything in this world she wanted...what would it be?  She replied unequivocally that she wanted to "Dance with Minnie Mouse".  A few weeks later, a document arrived explaining we would be sent on a 7 day paid-in-full trip to Disney World in July.  Wow.  Again, Wow.

Over the course of the summer I completed two extremely moving books.  The first a fictional masterpiece by John Green, called "Looking for Alaska", whose style of writing is spot on with his first person depiction of teenagers dealing with horrific tragedies either pending or just past.  I know we are in a good spot right now with Ellie's health.  Nine months straight with clear blood tests.  Just three more months and we hit that pivotal one year mark where the potential relapse stats get even more favorable in terms of standard deviation.  And right there in what I just said lies the heart of where books like Green's take me.  Again, I know Ellie is in a good place.  I know she likely is not going to relapse in the morning and I am not biting my fingernails that is an irrational inevitability.  But...there is the basis of my thoughts which always begin with the science and math of it all.  Logic, if you will, based on stats.  What is possible?  What could happen?  What is the percentage of each scenario and how will I know if it is approaching?  What are worst case scenarios?  It goes on and on.  Like taking pieces of lessons from every coach I have had the pleasure to work with, I find similarities to emotions and reactions within the childhood cancer world in many of Green's words.

Alaska Young is a character (spoiler alert) who inexplicably passes away from a head on collision auto accident.  Whether the "accident" was just that or perhaps a purposeful ploy to take her own life is at the heart of the story with her two closest friends (both guys) from her boarding school who spend the remainder of the book trying to dissect, analyze, and conclude the "why" with regards to their dear friend being gone now with a finality they have never known in their young lives.  The quote at the top of this blog is the main surviving character's moment of clarity he reaches at one point when realizing he'll never fully know what happened but that he could continue with a hope that had evolved from the essence of simply knowing Alaska for the short while he did.  It's a process of working through grief, I suppose.  But more so, it is a reset button after the fact for the daily grind of life we knew prior to the accident.  Changed forever, but still moving forward, the boys search for a reason to have faith in a phrase they call "The Great Perhaps".  What a thought!  Is the possible still possible when everything as you know it changes?  I know my analytics get repetitive with fears that often go in circles, but again....it is the process of discovering how I can form answers to my questions (both good and bad) and searching every single day for even just an inch more of peace which help beyond measure.

Our Disney adventure was nothing short of amazing.  A huge limo picked us up from our condo and whisked us away to the airport.  We looked a little funny strapping child booster seats into the large vehicle followed by the onslaught of luggage needing to find its way inside....but we made it eventually.  Kindergarten may be a big day but the day I don't have to travel with a giant stroller for twins might top it (Shhhhh, don't tell Polly I said that).  Once at the gate, the pilot came out of the plane into the terminal, bypassed all other guests and walked straight to Timmy and Ellie.  We got a personal escort to the cockpit and the kids were treated like royalty for the entire flight.  (Good thing too because six hours with 5 year olds confined to seats pushes limits.  I had put the over/under for Timmy's lavatory fascination driven bathroom requests at 10.  Amazingly, he went over.  What can i say, the boy loves to pee.)

We stayed at a place called "Give Kids the World".  A unique destination for which only "Wish" kids can stay at....and all those that do stay get only one week to do so their entire lives.  It is a magical place.  Everyone gets a 2-bedroom "Villa" to stay in where the kids get the master bedroom and bath.  The middle of the GKTW neighborhood has a carousel, a place with tons of games, mini golf course, pools, ice cream parlour that serves kids all day long (even for breakfast as Ellie will always point out) and several characters in costume who interact with them around every turn.  They hold Christmas for the kids on Thursdays and Halloween on Mondays.  Thousands of volunteers from all over the country come to Florida to staff this place year round and make it all happen.  All so that these kids who have missed out on a significant portion of their own childhood can just go nuts for a week.  We were very blessed to have the good fortune to visit.

Our "Villa" at GKTW in Orlando

Beyond just our hotel accommodations, we were given four days worth of tickets to Disney World theme parks, 2 days to Universal Studios and 1 day to Sea World.  We hit as much as we could in the five full days in Orlando and safe to say the kids minds were blown with the experience.  A magical blue Disney "Genie" pass made sure we did not stand in a single line and Timmy and Ellie got to do their favorite rides over and over again.  On one occasion at the Magic Kingdom, we signed Ellie and Timmy up to get the full spa treatment at the Bippity Boppity Boutique.  Ellie chose to be transformed into Elsa (Frozen) and Timmy chose to be her very kid Sir Knight.  Other occasions saw them meet every character possible, including of course Ellie's long awaited time with Minnie.  The pics below are just a few of the hundreds Disney even threw in at the end of our stay on a CD for free.  Awesome.

 The whole fam at Epcot

 Wish Granted

Very proud of Timmy for enduring this ride

as his thrill seeker sis wanted as much of Splash Mtn as possible.

Gotta love her courage.

 Elsa and Sir Knight....Priceless

Because everyone needs a little Goofy in their life...

and I hope you take note of Ellie's dress.

(Made from scratch by Polly!)

 GKTW Ice Cream for Breakfast

Ellie's Star of Hope which now hangs in the GKTW Hall forever

Summer Adventure #3 - We're Moving.  This was one of those spontaneous things we just decided....why the heck not?!  If we are to fully embrace this off treatment life then there can be no fear of the unknown to a degree that limits decisions.  Polly has led the way for us on this front.  And perhaps one of the remarkable things about being married to someone who is such a perfect fit for you is that she is willing to both hold your hand through blind leaps of faith as well as push you off the ledge when needed.  The truth is our financial situation because of cancer has been a struggle.  We have persevered though and found a way to get by through little sacrifices that have gone a long way.  Now, in one of the wildest real estate markets in the country where 3 bedroom homes with or without renovations even under 1400 square feet are routinely around or just above a million dollars...we have decided to sell our condo and try to give the kids what they deserve while everyone is healthy.  More space to grow, more space to play, and emphatically more space to cover scores of dolls (in their entirety) with blankets.  Please say a prayer we find something.  We expect our condo to sell within 4-5 days of being on the market sometime just after Labor Day.  After that, it'll be a watch and hope situation with us likely to get outbid on many of our initial choices.  A bit scary but also a bit exhilarating.  Polly and I have worked very very hard for the last several years and despite a cancer fueled interruption...we doin' this!  Polly's parents have been enormously kind to put us up in the interim and our hope is to have a house for the next 15 or so years found before Christmas.  I'll take crumbling walls and one bathroom if it means the little piece of land below it is ours and Ellie remains cancer free to dance as much as she could ever want to.

Towards the end of summer I finished reading Laura Sobiech's true story book detailing the life of her 18 year old son, Zack, who passed away from Osteosarcoma (Bone Cancer) on May 20th, 2013 in Minnesota.  He is famous for his song "Clouds" which he wrote and produced the winter before his death long after he knew he was terminal....and it went viral all the way up to #1 on itunes for many weeks.  Remarkable story that focuses mainly on how the family decided to live Zach's final 10 months or so after the docs told them there was nothing more they could do to help Zach.  What Laura experienced and wrote in painfully similar detail in her book about Zach's diagnosis was like looking into a mirror.  Several folks have said this blog of our may be book worthy someday and I have wondered if anyone would ever really care to read it.  Laura chose to put her's into a published version and I can say it has positively affected my own path tremendously.  She says very straight and to the point, "The cancer world teaches us to Hope.  When someone goes terminal and eventually passes on, what is there to hope for?  What can I hope for when the hope I knew is now gone?"  I read about ow they started truly living in those final months of Zach's life.  Parties, music, family antics, many many tears of the inevitable to come, the heartbreaking recollection of his final days and moments where cancer takes complete control, and most poignantly her thought process as she tries to live in the moment and just go with it but still from time to time helplessly falling back into sadness and despair and the questions of "Why".  I can see a way where neither confirmation of a cured life nor the finality of death will ever completely remove that despair.  All of these adventures and it never goes away even if it exists as just an off handed thought buried deep in my head.  So the choice is to wallow in thought, which is essential to move forward in my opinion, or to embrace what is ultimately a true Mystery of Faith.  I can embrace! I can.  I can.  I can....Be Here Now.  But there will always be moments despite the adventures basking in glowing sunsets, ice cream breakfasts, and building our material worth where I doubt...and I think....and I get scared.  Very very scared.  Next week is Kindergarten and I know the minute I walk out of there knowing a milestone never thought possible from a teary eyed sit down on a bench outside of the Stanford ER from June 26th, 2011 was just reached by two amazingly resilient kids....I'm gonna start wanting to see a T&E High School graduation really really badly.  The blood test in two weeks will bring that vision back to reality and the circle continues.  Such is life.  I'll grab Polly's hand and ask her to make the blind jump with me...again.  The good thing is, it's a new adventure every time.

3 Years Post Diagnosis Day - Day 1096

 The day before Ellie’s diagnosis 3 years ago, I took her to the mommy and me swimming class which we had attended for a few months and she loved, but that swimming class was different.  Jeff was out of town, and my good friend had come with me so both kids could still swim.  Ellie had loved the class and never cried once, but that day she cried through the whole class.  At the time I figured it was just because Daddy wasn’t there.  I remember the whole day like it was yesterday, the yellow swim suit that she was wearing, her big smile that was gone and my wondering what was going on.  We got home, and as we walked in, our neighbor’s son who was 15 at the time asked me what was wrong with Ellie’s eye.  I told him that I thought it was swollen from a bug bite.  I had felt something was wrong for several weeks, but couldn’t pinpoint it.  I decided early the next morning to take her in to urgent care, and that is when our lives were forever changed. 

As I reflect back on those days of diagnosis three years ago, I am forever grateful to be where we are now.  Without modern medicine, an incredibly strong daughter who had the will to live, the amazing community of friends and family who held us up during those darkest days, and the grace of God we wouldn’t be where we are today. 

This week Ellie earned her “stripe” ribbon in swimming.  She’s been working towards this ribbon for the better part of the year.  To earn it she had to tread water for 1 minute, swim 38 feet, dive down to six feet from the middle of the pool, jump in without goggles, do a dive in, and the one that held her up the longest, swim 16 feet underwater at the bottom of the pool.  We were blessed to have an amazing vacation to Maui a few weeks ago, and most of the time was spent in the pool or at the beach.  Without fail, every day in the pool, Ellie asked for the rings so she could practice diving for them and swimming underwater.  Her determination and ability to continue to work hard at something until she gets it is truly amazing. 

Three years ago today, we had no idea what the future held for our El-Belle, to be at the place we are now is truly the greatest blessing ever.  Sure, things could change with one blood test, but for now we are living every day to the fullest and enjoying every minute with Ellie and Timmy.  To all our friends and family have supported us and continue to support us on this journey, we are forever grateful.

Polly

June 2011

June 2014