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 

Okizu O.T. - Day 1068

Sometimes the words are hard to find and other times they are too numerous to count.  There just isn't always the time to output them regardless of the quantity.  As I was reminded, they need to find their way to paper.  It's actually inevitable.  Without their release there is no understandable perspective to keep us from moving in circles.  I met another "J.C." character recently in a book by Andrew Smith I finished a couple weeks ago called "Winger".  Joey Constantino.  A persecuted individual on a daily basis by some who can also say no wrong when asking for and listening to the very best of those close to him. The book has a few different reasons for Joey's existence and my interpretation does not necessarily do all of them justice, but I am incredibly struck by the moments in the story that change everything.  One minute Ryan Dean (main character) is asking Joey for advice, goofing off with him as they trail on to rugby practice, and letting him know how much he appreciates being able to talk to him.  The next minute, Joey has gone missing, is brutally attacked, and I think you can guess the end result.  Ryan Dean is left in shock and disbelief.  And now his venture to and from the rugby pitch is forever changed.  It is the razor thin line between what we know (and HAVE known) to be the comfortable truth and where we are heading when things change at an unexpected crossroads....and do so in the blink of an eye.  Coming to terms with what that means takes me so very long to sort through.  And thus the words do not always come together in a way that makes sense until occasionally I can find a way with this here blog.  Why can't the walk down to the field just BE....a walk down to the field?

O.T. is our cancer world lingo for "Off Treatment".  Funny, I kinda like that we have a little language of our own.  Its great to hear the newest members to our club ask about it and then see 10-15 people respond with all the various acronyms.  You gotta walk the walk!  Here is a good example -->  "My 5yo ck was dx 4 months ago.  We are in DI after a tough IM1.  The doxo's side effects were worse than the Pred (I HATE STEROIDS) but with checked with our onc, ped, and np who all said they will lessen over time.  Her ANC is still being effected by lingering HD MTX though Hemo and WBC remain stable."  Got all that???  ck = cancer kid; dx = diagnosed; DI = Delayed intensification (4th stage of Leukemia treatment); IM1 = 1st Interim Maintenance (3rd Stage of treatment); Doxo = Doxorubicin (the drug that makes hair fall out within 24 hours); Pred = Prednisone; I HATE STEROIDS = I HATE STEROIDS; onc = oncologist; ped = pediatrician; np = nurse practitioner; ANC = Absolute Neutrophil count; HD MTX = High Dose Methotrexate (Main drug of IM1); Hemo = hemoglobin; WBC = White blood cell count.  Now that the blood cancer parent dictionary has thoroughly been explored, we can move forward together. Ha.

This past weekend we did our third annual trek up to Camp Okizu, our beloved refuge in the Sierra Foothills outside of Oroville.  The OT world really takes you away and in a lot of cases makes you forget the day to day grind of dealing with chemo and its horrid side effects.  It also, as I have spoken here before, teases you into thinking a bit about the life before cancer when none of this was a worry at all.  This particular venture up the mountain was a bit different than the previous two because of the different mindset we have spent our recent days in with no chemo to tie us down.  You arrive to see Okizu with the magic that has always been there where smiles abound and commonalities are found instantly.  You also get a harsh reminder by just looking around the dining hall on the first night of what gave us reason to come together in the first place.  But for a weekend, we can find a way to set aside the weight of the world (that most would only see if you were able to peer behind closed doors) and just sit, laugh, share, and be amongst the vibrant energy of our kids who have been through more in their few years than most of us have in the 20-40 some years we've been at this adult life thing.  We met a family just three years into being new parents who are a year into a fight with their only child's bone cancer.  We shared a cabin with an incredible family (and now new friends!) whose son was diagnosed with the same thing as Ellie (A.L.L.) just last fall.  And we were able to see multiple friends we have met from our two prior visits whose children are all improving and/or well into another year of healthy remission.  We hear their stories and get taken back to June 26th, 2011 all over again....but in doing so, we find so much hope in the eyes of onlookers in our circle who know exactly what this feels like.  It is support, solidarity, humility, and the comforting thought, despite not being able to solve anything, that everyone "gets it".  For one weekend a year, this exclusive club feels like Home for our kids.

We went to Okizu over Memorial Day weekend.  On Thursday prior to the weekend, Ellie came to dinner with an unhappy look.  Her displeasure turned into angst and some sort of extreme tiredness.  Very bizarre.  She never misses a meal and now she refused to eat.  We would see bits of rage until finally getting her into bed that supposedly were from being overly tired.  But not eating in this manner is something begins to awaken my senses every time.  Friday morning she poked at her food but seemed a little better.  We decided to head onward to Okizu.  She ate half her lunch but again looked very tired.  Upon arrival at Okizu, we now felt a slight fever.  (Shit.  Now?  Really?)  Fever, Fatigue, and lack of appetite AND some sort of mention of neck pain.  What?  I could chalk it up to nothing significant....for now.  Saturday was much improved.  She was eating, playing with her two favorite twin counselors (who honestly could not be bigger blessings in our lives for T&E - they are the highlight of their trip to camp every year).  Ellie took her much anticipated spin down the huge Adult zip line as did Timmy and both got in the lake for a swim.  It was a grand day.  No fever, just fun.  On Sunday evening after dinner, things began to change again.  Ellie picked at her dinner and then went into a bizarre pseudo-catatonic state for the evening camp gathering under the stars.  Even the usual tricks to get her to laugh would not work.  She was exhausted and we hoped a solid 12 hours of sleep would solve the problem.  At 2am, we were awoken with her crying in pain.  We now had a 103 fever present.  A second fever following more fatigue and loss of appetite and supposed neck pain.  There are about 7-8 symptoms of Leukemia and these are four of them, especially with the coming and going now twice in a four day period.

2am in the middle of the forest with a 103 fever.  She is 7 months off treatment and showing symptoms that do not make sense with the cold and flu bugs we have seen with her outside of cancer in the last three years.  The floor dropped out beneath me and there we were walking the fine line.....or maybe it was just me.  Hard to tell because this got me going internally like nothing else has since she took her last pill in October.  The doc likes to say there is a hint of PTSD to every parent's OT world.  That may be true though to me, compartmentalizing it so we offer ourselves a plausible "explanation" to our feelings seems too easy.  Maybe its PTSD, maybe not.   Who the **** cares?! I have a 103 fever on my hands, its 2am, I'm on a tightrope, and there is nothing I can do but sit here, think, and watch time pass by like a tractor on the highway with one of those red triangle signs hanging off the back while he blocks traffic for miles. (Perhaps some leftover PTSD from driving Hwy 70 - sorry)  Its paralyzing in moments like this.  And without any warning, I fell off the Hope train.  In my eyes, as far as I knew in that moment, she was in fact relapsing.  Dammit.  What the hell just happened?  We were just swimming in the lake!  Why can't a fever be just a fever?

There is no one who will ever have as high of expectations for me....than me.  It is tough on some days, and thank GOD they are few and far between, to digest what may be happening and still hold onto the proper perspective.  It also doesn't help to go through these emotions at 2am.  What is it about kids that they must always get sick on a Sunday....and at night when everything is closed....and on a holiday weekend when the damn doc takes the subsequent Monday off????!!!!  Maddening, I tell you.  Ha.  I'll likely find myself celebrating profusely the first illness that shows itself at 10:30am on a Tuesday.  "Right, then....let's just scurry down to the doc and get on with it....this will be the easiest thing I've handled since 3rd grade long division." You may not have laughed at that last sentiment, but Joey Constantino would have done his sincere best to humor me.  He'll do that because it is the initial steps in trying to work through things.

I laid in bed for the next three and a half hours staring at the ceiling of our cabin.  My thoughts ranged from the sure cancellation of our family summer vacation to going back to eating before 5pm daily.  I think I fell asleep for the final hour plus before the sun was too bright to ignore.  And when I awoke, Ellie was up and her fever was still there.  But she was smiling.  Some sanity had returned.

Long story short, we drove home with the tylenol flowing to Ellie every few hours.  I even packed the car in such a different state of mind than normal, I left one of Polly's bags at camp. (Idiot)  Once home, we were able to get the go ahead ot Urgent care.  Now, not sure if you realize the difference between Urgent care and the E.R., but for our cancer world, the distinction is important.  The ER has protocols, crazy busy doctors who are usually unfamiliar with oncology patients, and overall lack of calm.  They have cold rooms, machines that go "PING" way too often, and cost way too much money when all you need is a simple CBC blood test.  Our ability to go to Urgent care instead on a Monday was a godsend.  Not the Monday part but the fact that when you are off treatment, you have the CHOICE as to where you would like to go.  Urgent Care = simple exam room, one doctor, one nurse, no pinging madness, and quality wifi so Ellie can watch the Ipad to keep her occupied while we wait.  And we did wait, patiently, for five hours for our blood test.  Her white blood cells, hemoglobin, and platelet count all came back normal.  No relapse, this was just a virus with a nasty fever......vacation back on, deep breath, disaster averted.

We are safe for another day.  Ellie is healthy for another week.  That will be everything and the onlything I will ever need to hear.  It took her until just today to fully get back to her normal self, but the worry has left.  All is ok except that I will be making the 6 hr round trip trek this weekend to fetch the missing bag as a result....but hey, maybe I can use the time to think of what Joey was trying to say to me at 2am last Sunday night despite my deaf ears paying no attention.  We try to be super human all the time as cancer parents.  I'll tell you its just not possible.  If I am to fall the wrong way off the tightrope one of these days, I'm not sure what I...we....will do.  But that day is not today.  We've got a lot of friendly eyes to look at around the circle who have walked the same path and without saying anything, I can always regain that feeling we are not alone.  That's something.

Polly and I watched Ellie and Timmy graduate from preschool today.  A simple ceremony in front of the family of preschool parents we have grown to love.  For some reason, when Ellie first got sick nearly three years ago this next month, one of the things that came shooting to my head was the desire to see her take in her first day of Kindergarten.  So that dream is now just three short months away.  We would not be nor could we have imagined being in a better place for school the last two years in prep for that Kinder dream than the comforts of RPNS.  We owe Kathy and Margie so much for taking us in when times were chemo centered and immune systems were non existent.  They are both wonderful teachers and even better human beings.  They represent our twins' first educational experiences.  A rock solid foundation supporting the huge things to come, if you will.  Including that first day of Kindergarten.  We love you guys because you love our kids like they are your own, like any good teacher selflessly does. :)  Thankyou.

Also endless thanks to a handful of people who continue to help us in enormous ways whether you realize it or not.  Jim & Marti for being a simple text away (Aloha!!!!) and Danny & Brandy for showing us time and time again what it means to embrace family around every turn.  To Carly and Corey for new connections and Kitty & Scooby who have only physically seen Ellie and Timmy for about 10-12 days total in their lifetime but embrace T&E like they have known them since birth.  To our respective parents for all the obvious reasons....especially my dad who can distract my worrying mind with Clash of Clans strategy for hours.  Ahhhhhhhhhhhhhhhhhh......you know when near disasters come and go, I get all thankful and stuff.

What a week.  Laughed, thought, cried.  Coach Valvano would be proud!  We have some pics I will post soon from camp and the graduation.  My prayers tonight are for this virus to be gone for good, for our new/old friends Ethan, Olivia, Christopher, Lauren, Sadie at Okizu, my former student CJ and of course my man Justin in Carolina who are all so full of life, its infectious when you see so many of them together.  It is our calling to be there for them.  Joey would be.  And if Joey is no longer with us, then despite my shortcomings I will still pledge again to do my best to stand by as he would.  The OT life is really just about keep on just keepin' on.

Wish - Day 1017

So it is my birthday.  38 years young though my mom would tell you it was much less than that.  As most of my esteemed circle of friends are experiencing, there are few thinks better than watching your kids turn the next age in the single digit decade where pure, unmistakable joy can be found in a bounce house or a swing delivering a birthday cake.  Right there with you, Mom.  I'm sure I will be lamenting the same thing 10-15 years from now with T&E ad nauseum.  Maybe I already am.  I don't think birthday wishes grow old, so there's always that.

What have I done?  Not enough.  Where have I been?  Several places, yet vaguely not much of anywhere.  What's next?  I wish I knew.  I want for that answer to sound more positive than it seems to read but it is not a hopeless statement meant to invoke a "whoa was me" feeling.  No, there is more to today because the search for what's next is ever present and the drive to get to that next milestone is alive and well.  There is a bit of a paradoxical nature to the search though.  Wishes invoke hope and ambition with processes laid down to start trodding toward what I think is where we want to go...but along the way new wishes pop up and or the original wish metamorphosizes to something that better represents the current reality we are wading through.  The point, at least for me, is not to get everything I ask for but understand how to keep progressing.  How many people only throw one penny into the water fountain and then call it a career for coin-hucking.  Not I.  And certainly not Timmy or Ellie as evidenced by our lack of loose change in the car for the parking meter every SINGLE time.  "No, wait DADDY...I just have to DO something one more time *kerplunk* HA!  Hey Ellie, do you have another coin????"  We have fed the fountain of youth a small fortune in this family, rest assured.

I keep myself pretty wrapped up in work.  Teaching is non-stop.  Lesson plans, lab preps, exploring new textbooks, the ever present requirement of professional growth and the evidence one must conjure up to prove we are in fact 'growing', and meetings upon meetings with students  in and out of the classroom to figure out how best they can walk out for the final time in June with a level of understanding (i.e. a grade) we are both comfortable with.  It's a 10 hour treadmill run to grind out one day and a dance party with water breaks the next.  All this going on even into my beloved off season.  My 16th high school soccer season of 4+ months concluded exactly a month ago.  For the first time in my career, I coached a team on the final day of the season...and we walked away with a championship to our name.  For all that I had wished the day would be some years ago when I began as a naive 22 year old, I was able to walk off the field with a tremendous sense of accomplishment.  We did it.  WE freakin' DID IT!  Every single kid on that team...a team that had become closer than any group of boys I had the pleasure to do daily work with on the beautiful game....every kid deserved the recognition of walking out number 1 that day.  And I can look back, likely years from now, realize the impact of several lessons learned through the course of a season that just had that feel of something special, and know that even if nothing in my tenure comes close to this again, I will always have 2014.  Truth.  But....

The weeks since have proven something I think I already knew.  The wishes in the fountain still haven't been answered yet despite the pinnacle reached and it is probably best to get back to the grind or dance party...however you want to look at it.  It was a momentous thing to accomplish but I haven't felt any less of the of the burden in the background.  The grind is the familiar method of pushing forward, so celebrate for the day and off we go.

I've been relishing weekend time since.  More so now than in a long while.  I think that has a lot to do with Ellie being off treatment in the spring for the first time in almost three years.  Saturdays and Sundays have no more shackles on them, even if they were the kind you could slip your hands out of the last few months of chemo.  I go home on Fridays thinking about what is possible and what things could be sought after for the next 48-60 hours, you know with a little Pharrell Williams slapping in the car (please excuse my undeniable drop to student vernacular from time to time....if you can't understand 'em, might as well join 'em, right?!).  It's a good feeling.  The kids have so many activities now from riding horses to going to countless birthday parties to riding scooters to making chocolate chip pancakes (!!!).  They will never miss a beat and rightfully so.  All this and I still feel as though the peace I wish for is not as present as it should be.

The cancer world is the cancer world.  There is no comparison.  None.  I catch these phrases every now and again in the hallways or in my search for what's going on in the world when I can sit down and tune in.  There are a ton of misuses for the word "cancer".  I even caught myself this year in the lockeroom describing how an unwanted trait brought in from the outside world to a team coming together could prove to be a "cancer".  What?  WHAT the hell am I talking about?  The analogy is gross, inappropriate, and cannot be used.  It is difficult to hear it put into play from outsiders trying to make an understandable point, but I'm very sorry....there is no way to use it outside of the world that created it.  Cancer is something that you can do everything right with, everything and anything.  You can go to the far depths of your power to enlist every weapon you have to combat it...and you still have zero control on whether it comes back or even takes someone from you.  That's the difference between a stupid analogy and the real deal.  Control.  By the way, while I am on the subject of poorly worded phrases, I'll throw out there the ridiculous line of "A watched pot never boils" as well.  Baloney, it doesn't.  Go retake high school chemistry and then go to your room to think about what you've just said.  I know that's unrelated completely to this paragraph, but if we're going to have these things in the english language, let's have some forethought.  Nothing is "like" cancer except cancer.  I wish I wasn't so acutely aware of that and I probably shouldn't let outside comments bug me...but they do.

I wonder if we are in the interim right now and that thought is scary if I let get to that point.  That could be applied to a number of things I guess if you were to sit around waiting for the next tragedy to unfold.  It doesn't consume me but it enters my mind from time to time.  Am I making the most of the time right now so that I don't look back in a few years wishing I had done more?  It is a tough question because the treadmill grind doesn't much care.  Bills need to be paid, school events need to be had, the long off dream of being able to purchase a home in the Bay Area has to be pursued (despite inches at a time) and we have to find time to rest and recuperate or else I will be mailing the electric bill to the library....and that just won't work.  The interim represents a unique look at where we are at without the immediate pain of direct cancer contact.  We are trying to move on and we are succeeding for now.  I say "for now" because "for now" is all that really matters to me, especially on a day that has always been a fun one for most of not all of 38 years (I would have to admit I do not recall the joyous times of birthdays 0-5 very much but apparently they were thrilling).

Lately I've been wishing to find those quiet moments where things stand still.  The special place where everything makes sense for a few moments.  It doesn't have to be me by myself, but it has to present itself as something of a deep breath, perhaps a little sigh of relief, but more of a lung filled swallow of air that exhales completely without worry.  I think about being up in the Sierras on a backpacking trip when we first came upon the Cotton Wood Lakes area, I have vivid memories of sitting next to Polly on our honeymoon on the shores of Kauai in white lawn chairs and not moving for almost two full days or our trek across country to Carolina where en route we descended out of Yellowstone park and saw EXACTLY why they call Wyoming Big Sky country.  Sometimes I'm on my grandfather's boat sitting on the bow as we embark beyond the jedi ton escape to Catalina....the salt water filled air an incredible taste of what home will always be for me...and the incredible feeling of a Saturday dive being under the ocean's surface looking at life in complete silence.  The day I came home from high school in March of my senior year, no one else home yet, and on the corner of dining room table was an envelope with my Bruin acceptance letter which I relished in complete silence before picking up the phone to call my dad.  Or the overnight in Banner Elk in the Appalachian Mountains (yes, that's a town...please know your geography with this blog) when Polly and I were engaged, enjoyed our time to the fullest and then had to sit next to a man at brunch the next day who was dressed in yellow head to toe to cheer on his beloved Tenneesee Chatanooga football team that day (yellow socks and shoes, brutha?!) but found out what the weekend meant for us and wished us well.  And of course the nights were Polly and I sat feeding the twins at 1:30am half awake, trying to laugh at Jimmy Fallon's jokes on Late-Late-Late night when the only worries were burping, diaper changes, and trying to function on 4 hours of sleep.  These times were a lot of beginnings for the most part.  I'd like to wish for more of those.

I am reading a book recommended to me by my Aunt (Thankyou!) written by John Green called "The Fault in Our Stars".  I have not finished it yet, so please do not tell me how it ends.  Actually I think I already know the ending will not be pleasant but the perspective of a terminally ill 17 year old girl is helping push this spring time lull to a better place for me....even if it just means I have a better Tuesday following this birthday monday when its back to the treadmill.  She speaks in real terms and calls it how it is when faced with slowly succombing to cancer.  The author shares that the only thing worse than having cancer is being a parent with sick child.  Interesting, I don't know if I fully believe that but it was quite something to see someone else say it.  Oh how I've wished this was my battle and not Ellie's.  Anyways, the main character, Miss Hazel Grace, embarks on a trip through a Make-A-Wish esque organization to seek answers on what happened to several characters in her favorite book.  Hand in hand she goes with a fellow cancer warrior who she undoubtedly falls in love with.  It is a heroic tragedy from the start and her line of "The World just isn't a wish granting factory" rings very true for me today.  Maybe getting what we really want is not the goal.  Recognition of moments that make time stand still regardless of the overlying factors could be the heart of the wish.  A wish that can never truly be granted but will at least let you keep wishing....and hoping.  Cancer has to be one of the only things that makes me hate saying that and love saying that at the same time.  Hazel says to a non-cancer friend of hers at one point who keeps commenting on how strong she is, "I'll give you all my strength, if I can have your permanent remission".  Brutally honest truth when looking at how those two worlds intersect sometimes and though astonished she would lay that on her friend in broad daylight....cannot blame her in the least.

I had dinner with just Ellie a couple weeks ago.  Timmy had a follow up appointment with his eye surgeon (he is doing awesome, by the way, on that front....better than we could have ever hoped for) in the city which Polly took him to.  I picked up Ellie from school and decided we needed a Daddy-daughter dinner at a nearby restaurant.  So, we got a two person booth facing eachother and she got right to coloring the placemat, her strokes now completely within the lines carefully laid out so that each color can be seen in its proper segment on the page.  Her attention to detail was not so mesmerizing that she would look up and pose a few questions my way.  "Daddy, what will you have for dinner?"  I had thought about telling her that I wanted seared Ahi with garlic mashed potatoes and seasoned greens that oozed with a sauce underneath the fish....but I settled for "I'm gonna have Pasta".  "ME TOO!" she said with as much energy as she has when she wakes up gleefully at 6am and starts prodding timmy to wake up or else she threatens to start singing.  And we continued our banter back and forth about how her day at school was, with her head tossing side to side and her now near neck length pig tails never ceasing movement.  She was looking forward to getting to go swimming again now that her leg was almost healed and she wasn't sure if Timmy could go with her because his eyes were still red, but she would ask Mommy.  "Daddy, I want Milk"  I like when she asks for things that I can give to her.  From start to finish, I think we were in the restaurant for all of about 24 and half minutes.  But I can tell you time stood still.

Even if my ultimate wish for her (or for Polly, Timmy, and I) has not been granted yet, I am committed to doing the dance party/treadmill to get to Tuesday so that I can see again if it might be.  If its not, I'll get back to seeking the moments in the interim.  The Hazel Graces have a deadline....right now (and I mean RIGHT NOW)....we, us, Ellie do not.  I have to remember that.  So, #38 is another beginning for the four of us, right?!  One with limitless potential.  I wish with everything I have and all that T&E will become for that to be true.

Blessed - Day 998

It is Polly here, we haven't posted lately because we have been busy and things have been going well.  For those of you we don't see on a regular basis and are wondering what we've been up to, I thought I would write a quick update.

We are 4 1/2 months from the end of Ellie's last chemotherapy and her counts are looking GREAT! We spent a long day on Monday at the hospital doing several different checkups and the results came back that her ANC is in the 5000 range, which is fantastic.  She had been sick for labs in February and everything had dipped down so we were happy and relieved with these labs.  She also completed her ECHO on Monday and everything is looking good with her heart too.  Due to her age at diagnosis and the amount of one chemotherapy drug she had to take because she was diagnosed high risk, they have decided to do her ECHO'S every two years instead of five, but things are looking good.

As some of you know, back at the end of January she fractured the top of her foot.  She is quite embarrassed when people ask her how it happened...She and Timmy thought it would be a good idea to hold hands and see how many of our stairs they could jump down together, what a surprise that didn't end well.  She had a second check up with the podiatrist this past Monday, and they said that while it is healing, she still needs to stay in her "Wee Walker" (walking boot like Daddy had last year) for another 3 weeks.

We've also been busy with Timmy these past few weeks.  Last Friday he had his leg muscle harvested and his slings which were placed in his eyes at 6 months of age, replaced with slings made of his leg muscle...science is pretty amazing!!  He is doing very well.  It took about 24 hours, and then we had our happy little boy back. 

Finally the last week of February and first week of March, Jeff and his soccer team kept us busy as they proceeded through the playoffs to win the schools first CCS title for soccer.  Timmy and Ellie were ecstatic that Daddy won a trophy and that they got to go on the field with him.

As we move towards the Spring, we are looking forward to some downtime with Jeff, as he now has his afternoons free, our trip to Camp Okizu for Memorial Day Weekend, and Ellie's Make A Wish trip to Disneyworld in July.  We are so incredibly blessed to have Ellie and Timmy doing so well right now.  We try to enjoy every day to the fullest.  We ask that you keep Justin Solomon, a fellow cancer warrior and friend who is awaiting a kidney transplant in your prayers.

Polly

Stay - Day 945

You would probably find this a bit strange, but I cannot write in this thing on any given night.  Even if I tried, the words just don't flow until there's been enough stuff pent up for a while that a little relief becomes inevitably in the works.  Even tonight, I should be grading papers or piecing together some film for the soccer team to study ahead of our next game later this week.  But, tonight felt like Blog night.  And when it feels like Blog night, there isn't much of a choice but to settle in and let it flow.  My head is often like this constant virtual concert series many hours of the day.  It can be both obtrusive and peacefully thought provoking but one thing I've learned not to ignore is an increase in volume usually means it is time to release a bit. So, this, as always, is an attempt to make sense of it all.

Off treatment life is obviously much easier to deal with.  We do normal things now everyday, not just some days, and keep a schedule busier than before the stork rolled in with a couple of kids at the doorstep a few years back.  It's refreshing, it's invigorating, it's terrifying and it's amazingly wonderful.  Today I woke up to the sound of both kids gleefully playing together in their room (until the clock turns the magical color of Green signifying they can officially vacate their beds), sat with both in church while they squirmed through the Homily, hung out with both on the monkey bars, cooked them up a homemade dinner, and then got unsolicited offers for kisses before bed.  Not a bad Sunday.  Maybe a perfect day.  And as they are now both sleeping soundly for the night with time slowly slipping away from the weekend, I am wondering if we can keep this pattern going.  Whatever is happening here, I'd like it to stay a while.

This new found freedom is a tug of war between wanting to leave the last few years behind as far as possible and understanding you will have this "worry" to live with for many years to come.  In those first few weeks after diagnosis when the hospital days were long, thick, and draining....the hope was that she would just live.  It was a bit of a naive thought looking back now but let's face it, the first words we all think of when cancer enters the building is...."is she going to die?".  You distance yourself a significant amount from the acuteness of that train of thought because there is a process with thousands of steps to take before having to ever be faced with that sort of ultimatum (if ever at all).  I remember writing in a post during that initial time period about wanting to see her walk into her first day of Kindergarten as a dream we were aspiring to make a reality.  Now today, two and a half years later, I find myself touring potential kindergartens for her to attend seven short months from now.  We are discussing merits of resources both kids may have with each school as they progress through their early years, we are exploring innovative learning styles to expose them to, and we are talking about where they will be able to grow further in a community that embraces where they have come from....and who they are soon to become.  We are NOT talking about survival anymore.  We are not trying to just get through the night so that we can seek more advice from the doc in the morning.  We are living right NOW with an opportunity to leave our world of the last few years behind.

But I am not so sure how far I want to go with this.  How horrible is that to say?  Right now is good.  Right now is HEAVEN.  I want to stay here.  I want to STAY here.  Why do we have to keep transitioning in time if right now works.  She is healthy, we are able to make fantastic short terms plans, we can do anything we want TODAY, and we are just doing what anyone else wants to do.  We're living.  Let's stay here.

Don't get me wrong, I am not trying to deny progress forward.  What I am saying is that the future in my eyes sometimes represents a bit of an unknown that could remove all of these good things, occasions for celebrations, and opportunities for sitting back in your chair to stare at the sunset and letting your eyes marvel at the simplicity of what good times really entail.  We are more than just peering over what seemed like an insurmountable wall a few years back.  We are standing tall and basking in the sun from the other side.  I just don't know if it is something to embrace fully and completely....or is it teasing us like the dollar bill on a fish wire in the plaza connected to someone who can control the situation with a simple "Yank".

Last week, Ellie had her two month of off-treatment check up and blood test.  Everything came back great.  Her white blood cell count is climbing and her ANC value (immune system rating) was over halfway back to normal levels.  Oh my goodness, she has an near fully capable immune system again!  It was a quick appointment, and I'd be lying if I didn't think of the worst for a few seconds, but the day felt routine.   We were free for another month.  Now back to our regular lives, yes?!?  No, of course not....it is never that easy.

Later than night I got an email from a friend in Los Angeles who I connected with a few weeks into our induction therapy after diagnosis in July of 2011.  We were introduced to each other because his daughter had been diagnosed with the exact same form of A.L.L as Ellie just 6 months prior.  He and I began to exchange emails over the next several months.  With the treatment protocols being near identical, I had someone to ask questions to about various phases of treatment from a dad's perspective.  As we were entering a new phase of chemo, he was typically finishing it.  Everything was always on the up and up.  The hopeful voice is always the welcome voice when it comes to the day to day in our world.  I've said this before....you find a very strong connection with those who are walking beside you in this battle.  Anyways, his daughter had finished treatment early last spring (2013) and I had not heard from him in a while.  Ironic he would email me the same day as Ellie's monthly blood test, but so be it.  His daughter was classified from the beginning as Standard Risk.  Ellie was deemed High Risk.  The two usually differ by white blood cell count on diagnosis.  The survival percentages favor the standard risk slightly more but really the only difference is the type and amounts of chemo you get.  His email on this day was to tell me that after only one year, almost to the day, his daughter had relapsed.  He was now settling into his new home in Memphis at St Jude in attempt to get the best relapse therapy possible.  I near dropped my phone from which I was reading the email from.  How could this be????  How could this happen????  Why Why Why???? DAMMIT!!!!!!!

The next day I was at school teaching and trying to concentrate....but amongst the daily grind of lesson plans, lab prep, purchase order signatures, and soccer practice....my head was abuzz.  In some cases the music was deafening.  I could not stop thinking about this poor little girl.  This was someone else's Ellie who had been through the identical set of procedures we had and experienced a full year of treatment before being thrust back into survival mode.  I cannot tell you why a particular song bounces between my brain cells because it just happens....even if it isn't a perfect fit for what the song was originally intended for.  On this day it was Rihanna's "Stay".  I don't think the original intent of the song was meant for what I was applying it to, but the tone of the singer emits an emotion that has a raw sound to it.  There is a vibrato in her voice that evokes pain yet demands we find a way to salvage today.  Why was this in my head?  I have not a clue.  I listen to the radio about 10 minutes to work and 10 more on the way home.  Things heard can get filed away unknowingly for use at a later time.  Two months from now, it'll be a different song, I'm sure, but I do know that if it helps me sort through the chaos of this emotional cancer world roller coaster that just goes on and on for years...then it serves a good purpose.

We are teased with what a normal life feels like.  Where the sky may be the limit again after so much grief.  We do this dance off treatment in a careful manner but still with the knowledge that there really is zero control we possess over the situation.  The rug may be ripped out from under us at any place and at any moment.  It can be a thousand pound weight somedays.  And here I was fortunate enough to be at work after a clear 2-month Ellie blood test, but with one of teammates now forced to turn back the clock and begin again the three year gauntlet of chemotherapy with an added step of a bone marrow transplant (which carries a 3 month hospital stay with it).  I am amazed at how strong and hopeful he was in his email and how fragile I became for a day.  It can all change so fast.  So very fast.  Forgive me for wanting to stay in the moment a little while longer as I try to get comfortable with this proverbial weight belt of sorts.  I wanted to share a post from a fellow Mom of a child with A.L.L. who summed up a night we all who have walked this cancer path with our kids have had on this journey.  It is certainly less intense now being off treatment, but the emotional toll is still ever present.

It is one of those nights

where you can't hold back the tears

for no good reason.

So, we do what we do best

hide and cry for a quick minute or two,

wipe the tears away,

go to your kids bedrooms to read "Tickle Monster"

with a smile and a laugh,

kiss them good night,

then walk with away with the same tears

you had turned off for those few moments with your kids

You all know what I mean...

Though staying in one place for quite sometime is comforting, its also impossible.  I know this.  Call us a couple of parents that want to keep our kids at the age of five forever (minus the whining for silly things when we are in stores or the going "limp" when we need them to stand up and put their clothes on....I could really do without that.  Seriously.).  This rationalization of how to proceed cautiously toward the future while respecting the "struggle" with where tomorrow may take us is something there is no preparation for.  As an educator, I respect more than anything a colleague or mentor that knows and preaches daily that he or she will always have more to learn that what they can possibly teach to others.  The 21st century can throw all the technology and innovative verbiage it wants at the learning process, but these are just minor tools.  I am convinced progress only occurs when we can open our minds to walking out from where we stay stagnant and embrace the good news that frees our thoughts from burdensome worry.  I am simply at the mercy of what is supposed to happen next....to which, of course, I will never have a clue.

I am not there.  I hope to be someday.  Until then, the thought of relapse and all that it brings with it is ever present on many a occasion.  Polly and I have great friends and family around us all the time...so we are never far from support.  That is a pure god send, let me tell you.  I watch Ellie swinging on the monkey bars and smiling bigger every time she decides to go one bar further.  She has an intensely eager curiosity to life that is undoubtedly linked to her instinctual ability to fight as she has for the last 945 days.  I sometimes will painfully flashback to Day 4 when we were inpatient for the very first time (and I did upon hearing of my friend's daughter's relapse) when two nurses carefully took Ellie from our arms and pinned her to a chair.  While each held an arm and a leg, a third stood over her to reassure her everything would be OK.  Two additional nurses (bless them for the job they had to do) then came in with a needle each the size of my finger and to jab into her thighs a dose of PEG-Aspariginaise....one of the early chemos she received to rid her of the 96% cancer cells in her blood.  It is what it is with this wretched disease.

Those flash backs are few and far between these days as we carry on to this new normal, but I am actively looking for a way to be more at peace in the off treatment life.  Even if the "now" only lasts a day's worth of hours, I want to mentally stay here with firm resolve in that brief time span...and enjoy every last second.  The coaching world I know so well demands I stay one step ahead of the opposition, I anticipate a player's state of being before he enters the pitch, I recognize limitations, and I fully embrace those things the team does exceptionally well.  If the chips are in the right place, the result should take care of itself.  So perhaps this brief day of freaking out I had, with news of a friend's relapse, was not so much about wanting to stay put and ignore what the future may bring.....but rather it was a reminder to the Stay the course.

Yesterday, my team put a ball in the net with 3 minutes to play in a game that looked to be fit for a frustrating draw.  It was a little unexpected magic that won the game.  (Soccer is pretty awesome that way)  There is absolutely nothing I can do from the sideline to directly change things.  I'm just there to cheerlead, hope for a positive outcome, and have a little Faith that these worries that seem so profound in a given moment cannot overshadow all of the work we have done to get to this point.  Despite the lack of ultimate control, we are in a new normal now.  We've arrived.  We'e here NOW so lets not get caught up in what may be or what could be.  The magical moments will show themselves when the time is right.  In terms of moving forward, We will never.....ever....give up.  With God's help, with all the incredible people I see everyday, with my family, and with Ellie's hand in mine, we're here to stay.

Thanks for letting me rant a bit on a Sunday.  This is one of our favorite pictures of Ellie at her Gratitude Party, marking the end of treatment last November (2013).

Please pray tonight are for our friends in Memphis at St Jude.  Thankyou.