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.