Dear Ellie - Day 361

Dear Ellie,

    I've probably written this letter a few hundred times in my head over the past few weeks and so now finally time to put it down on paper.  I know you'll be old enough one day to read all of this and relive a lot of what your mom and I have gone through over the last 12 months, which I apologize for in advance by the way, but as I know your curiously beautiful mind will have many questions...and perhaps this serves as a method to answer a few.  It will be impossible to convey everything in just one post here, so I am going to put as much as I can down now and promise there will be more letters forthcoming in the future.  Your story and our story evolves everyday.  While we know that the lessons learned down this path along with experiences that run the full gamut of emotion will shape how we proceed with the future, I want you to know that your ability to become anyone and anything you hope to be is entirely now and forever will be within your own control.  Your mom and I will offer, as we have since the first day we heard your heartbeat on an ultrasound, unconditional love with limitless potential to help guide your path.

My hope is that when you can really sit down and read this blog for meaning, you will be at least 12-13 years removed from your last treatment and able to proudly grasp the accolades and responsibilities from being the hero cancer survivor we know you already possess inside you.  I am not trying to put undo worry into your now healthy and happy daily routine, but as I have said many times before - in order to know where you are going, you have to know where you are coming from (Thank you Coach V).  Your mom and I have strengthened ourselves over the past year in ways we needed to be with experiences we've struggled to understand why we've been chosen to take part in.  A year ago from next week will be the first anniversary of your diagnosis.  We marvel a bit on how it seems like another lifetime ago when thinking of the days, weeks, and months prior to that date.  We've talked about it as "back when life was normal" which I suppose makes sense given the context.  When buried into my own thoughts though, something pokes at me to beg I realize the perspective gained to the cancer world has been a calling to a better "normal".  Many days I agree with that, for sure.  Still every so often when we see so many around us doing the things they should be doing to enjoy life, it is hard to know what end result was meant for our forged path forced in a different direction.  However, you need to know that this aspect of adjustment is 100% our burden.  I won't have you lose one day of the life you so richly deserve because of dwelling on what might have been.  You have already overcome much more than the average person and proven ultimate strength and resolve of character when there was absolutely no requirement to do so.  You are my super hero.

I hope music is a big part of your daily life.  I'm sure it is.  As a high school teacher now of over 7 years, I have yet to meet a teenager who doesn't have a playlist he hasn't arranged himself or at the very least an opinion on what constitutes "good music".  I-Phones are the big craze right now.  Call it an all-in-one phone plus music player plus gaming device plus communication machine extraordinaire.  I can't wait to see what you might have in your possession now a decade and change later as technology seems to evolve by second around here.  Music for me over the years has been a method to explore and express emotion when spoken words are either not sufficient or just not possible in that particular moment.  The time of day, the situation at hand, the fallout from some interaction, or the joys to be shouted from the rooftops all bring about different musical ideas.  Certain songs have been ingrained into my head because of moments they were either first heard or where they spoke so loudly at the time I don't remember anywhere else I heard them other than that specific time for the most part.  I hope you won't be afraid to roll the window down on your own road some days and sing along with something that moves you.  If its a song or album that makes you laugh, think, and cry....it's a keeper and worth hitting the repeat button for.  The choice of musical genre for the occasion is a very personal choice so don't let anyone tell you different.  What you choose to express yourself with should always be well within your control including direct access to the play, skip, back, pause, shutdown, and crank-it buttons.  You'll know when to use each without even thinking about it.

Last summer when all of this was so new and overwhelming to your mom and I, it was hard to find a release many days.  We just went appointment by appointment and tried to concentrate on getting our shoes on in the morning to make sure we could keep upright for you and Timmy.  I don't know if you'll ever understand how lucky I am to have "bumped" into your mom nearly 8 years ago.  Our roads merged into a unified path one weekend in North Carolina several years ago when we ventured west from Chapel Hill to the mountains for a fall getaway.  We had just seen this movie Elizabethtown and recently bought the soundtrack so it happened to be in the car.  While we saw the sights, hiked, and drove the Blue Ridge Parkway (with the windows down!), this quirky little CD played over and over again.  I remember the feeling of having life at my fingertips.  Newly engaged, new career on the horizon, (no money - ha!) and new adventures to behold.  The Hollies reminded me that Jesus is the ultimate ally, Tom Petty expressed what it was like to have a clean slate, and The Hombres wanted us to just sit-er back and let it all hang out. :)  More than that though...unbeknownst to us at the time, were preparing for the hope and promise that would be realized when you and Timmy were born.  We also were building a foundation that we heavily lean on today to keep us going.

When you have felt really good following recovery periods of your heavier chemotherapy, you have had this uncanny smile and desire to dance in the living room.  For some reason, you got stuck on Coldplay's "Every teardrop is a Waterfall" and it is now synonymous with the Ellie 2-and-a-half-step.  I've thought this was quite the pairing.  After all, if you are going to have your emotions brought to tears, why hold back with a trickle?  Your mom made this incredible 30 minute pictorial set to music for your third birthday.  PLEASE try to find a copy in one of our old boxes if you don't remember.  It tells a story of survival and has helped define who you are today.  From it you took a strong liking to a Kelly Clarkson song and would always shout "that's my song" when it came on the radio in the car.  You mark my word here, our belief in what you are capable of knows no boundaries.  It has been said many ways but bears repeating today with the force of every living ounce of energy I have...That which does NOT break you will make you powerful beyond measure.

I couldn't even turn the radio on for the first month of your treatment.  I was angry when I was alone in the car and I felt like it wasn't right to try to escape into my own world when you had been given no choice but to walk to a trail head you did not deserve to be at.  It took a couple months but as I started to come out of the fog, so to speak, I looked behind me....I mean really looked behind me.  People were lined up, too many to count, standing ready to fight with us.  I was thrust into a scene I can only describe as breathtaking but not for the weak of heart.  You were and are still equivocally standing in front of Achilles' Greek militia ready to take on Troy and Braveheart's army preparing for the Battle of Stirling.  With a little help from Gabriel Yared and James Horner, I could hear the music again!  The prayer circles that have been told of your plight reach around the world and while I draw silly movie references in an attempt to rationalize it, the point is today you are firmly atop a sea of a million hands willing to lift you up, hand you Roy Hobb's bat, and applaud while listening to Randy Newman describe how you knocked it out of the park without even blinking an eyelash.  Cancer has NOT and will NEVER be able to take away the bond we have marching together with you....and with each other.

You deserve to....dance with Footloose until your feet hurt, hang on every tear drop of Ishtak Perlman's violin, get the LED out when you just want to rock, experience shouting SALT three times with room full of Jimmy Buffet fans, embrace an Easter Hallelujah Chorus, go searching with Bono and I because neither of us still haven't truly found what we're looking for, find a place to be Homeward Bound for so that Simon and Garfunkel can make you feel like its the only thing that matters, Imagine with John Lennon, find Nirvana when its good to scream for a while, and finish the night with a little Louie Armstrong alongside your son or daughter by saying good night with a Kiss to Build a Dream on.  And should doubt ever creep into your mind during a standoff where life doesn't seem fair, just pull out a little Fort Minor and tell 'em to Remember Your Name.  I am convinced you have much to teach others down the road.

Please look out for Timmy.  He has been through so much this past year trying to figure out what's been going on and has a sense for nothing but love and compassion with you.  (Ok, maybe with the exception of when its his turn to choose the Elmo video, but hey if that's the worst thing, your mom and I can deal)  Watching him months ago reach his hand into your crib when you cried so often from being nauseous or lovingly pat your mom's side in the middle of the night while she tended to you describes a connection he feels with you that no one else will ever have.  A few years from when I write this, there will be times when kids give him a hard time because of his eyes.  I hope you'll return the favor, reach out, and redirect his attention to you.  You are the best friend each other will ever have.

We just finished your first three month cycle of Long Term Maintenance (5 and a half cycles to go) and began a new phase today with a Lumbar Puncture in your spine which they put you to sleep for.  We also have to start another 5 day trek of Prednisone.  Hopefully you won't remember much of what it is like to be on such harsh drugs BUT your blood counts could not be better!  Haven't seen an ANC value below 1000 in over a month.  Yesterday for your pre-procedure physical, you sat to have your port accessed and labs drawn like your usual stoic self.  Chin up and chest out like a pro.  All of the nurses at the Bass center have become fond of seeing what you are wearing (your mom knows how to dress you to impress) and yesterday they were treated to you beaming from cheek to cheek showing off your new pink bow.  This is the first thing your hair has been long enough to hold in over 10 months.  YEAH!  I cannot promise we won't go back to a thinner state on that front (though as I grow mine back now, it may be already), but to me it signifies how your have charismatically carried yourself through this from the moment those beautiful pig tails were lost.  You know the difference between triangles, circles and squares as we discussed yesterday while drawing, you just learned how to put your face under water in your swim lessons....and you know how to put cancer in its place.  You've already accomplished more than some have in an entire lifetime.  Complacency is not on the agenda, so keep going because you've been given the precious gift of another day.  It's something I relish every morning I wake up.

From here our path is a little unclear but we have learned a bit more patience over the last 361 days.  I have a hard time celebrating big milestones because we still have so much ground to cover medically and much more after and I never want to it all to be too good to be true.  But, we as parents can prepare you for as much as you are ready to learn.  That we will go to the ends of the earth to do.  When you are able and willing, my promise is that you'll be able to walk outside to the most perfectly manicured pitch you have ever seen.  Every detail will be covered, every white stripe perfectly contrasted with the lush green grass aimed to serve as your playground.  The boots to be worn are already magic on your feet (did you see the size of that ladder you scaled at camp???) and ready to carry you further.  What you do once you take the first step in bounds, however, will be entirely up to you....and all of the nurses, doctors, friends, family, and army of supporters who fought for you will be cheering so loud, it'll be the most moving music you've ever heard.  That's my goal...with HOPE very much alive in the meantime.

I'll leave you today with lyrics to a song your mom and I used to commemorate our wedding and the promise of a bright future:

"ONE"

by U2

One love, One life 

When it's one need , In the night 

One love, We get to share it 

Leaves you baby if you , Don't care for it 

Did I disappoint you? 

Or leave a bad taste in your mouth? 

You act like you never had love 

And you want me to go without? 

Well it's... 

Too late Tonight 

To drag the past out into the light 

We're one, but we're not the same 

We get to 

Carry each other, Carry each other 

One

Have you come here for forgiveness? 

Have you come to raise the dead? 

Have you come here to play Jesus 

To the lepers in your head?

Did I ask too much? More than a lot 

You gave me nothing, Now it's all I got 

We're one, But we're not the same 

Will we, Hurt each other 

Then we do it again 

You say 

Love is a temple, Love a higher law 

Love is a temple, Love the higher law 

You ask me to enter, But then you make me crawl 

And I can't be holding on, To what you got 

When all you got is hurt 

One love, One blood, One life 

You got to do what you should 

One life, With each other 

Sisters, Brothers 

One life, But we're not the same 

We get to

Carry each other, Carry each other 

One... life 

One

Sleep tight my beautiful girl, Mommy & Daddy loves you.

Camp - Day 340

So, it has been a little while.  I think you should know by now that No News is definitely Good News.  We're in a good place for the most part and I have been very busy wrapping up the school year.  Ellie's counts are at their healthiest points they have ever been since the start of chemo, she has had zero chemo holds since I last wrote, AND has managed to cut Timmy's usual lead on their bicycles while circling the neighborhood more than in half (now that's progress).  I also want to tell you, and you'll excuse me if I well up in front of the keyboard a bit here, that her hair has grown back (about 1 cm) over her entire head....the most beautiful shade of brown I think I have ever seen.  It's just hair, I know, but it speaks volumes of the path to regeneration, survivorship, and the power of the human spirit.

I've had about three different blog posts going through my head on many an occasion in the past few weeks, particularly during the brief 45 minutes or so I savor most days recently where I've been able to exhaust myself running on the track after school while immersing my thoughts into music from the ipod in a mental place that is just mine (Yep, need to start carrying a note pad around in my running shoes)  Lots of papers to grade and our first two weekend trips away from home since Ellie originally got sick have kept me from sitting down for a couple hours to write and doing those thoughts justice.  However, with the last stroke of my pen on the final delicately assessed exam this afternoon, I closed the book on my 6th year of teaching and stepped off of the treadmill for a couple months.  Time to slow down a bit.  Time also to reflect on an experience we are one week removed from that brought us such special moments, I'm not sure we'll be able to adequately express how incredibly blessed we are to have been a part.  So here goes...

I was very fortunate to have many opportunities growing up to spend time in the outdoors hiking, camping, and backpacking be it with the Boy scouts or with family.  I don't think I fully knew the importance of the contrast back then but the ability to leave the chaotic pace of 6-7 high school classes and countless nights in a row with late night homework/numerous (maybe too many) activities taught a good lesson on what the tranquility of mother nature can do for you.  One of my top experiences of all time by far was the two week trek I took when I was 16 into the New Mexico high country just outside of a town called Cimarron at the southern end of the Rocky Mountains.  It was a 12 day 60+ mile adventure of a lifetime.  The journey consisted of us forming into a crew of a handful of kids plus a few adult chaperons and making our way through an itinerary of various trial camps while we made this giant loop of the Northern New Mexico Wilderness.  You can only have your first experience with anything once of course, and so the discovery of what was around each corner was pretty amazing.  Each camp we stumbled upon had different activities to challenge teamwork, resolve, problem solving, and (more so than the rest) your ultimate commitment to see it through.....all demanded of you immediately after arriving from the day's hike of several miles to get you there when emotions and overall fatigue are just about ripe enough for conflict.  There were moments on that trek where we had to care for an injured crew member, fight our way through weather to pick up food, be extremely weary of bears at night, and just keep going on tired legs required to ascend another 1000 feet the next day when just about everything physically attached to you HURT.

The meandering path took us to places I had never known nor could have imagined.  When the sun started to go down and you could look across a meadow or natural lake or terrain near untouched by human hand....there was an opportunity to just LISTEN, listen to almost NOTHING and just BE.  There was no traffic, no voices, no schedules, no deadlines, no social pulls, no computers in this moment where words were inadequate to describe a serene vision right in front of you that begged for heavenly descriptions.  All of it lighted by vast amounts of stars you'll never see anywhere but in that setting.  It was an EXPERIENCE (for me) where you could see deeper into why we are doing what we are doing.  It was clarity of purpose and meaning to every twist and turn on our trip.  It is hard to describe exactly and I've been trying to painstakingly find a way to paint the proper picture for a long time but in these moments...you only get a glimpse each time and you have to remember to take a mental snapshot so to remind yourself where you left off for next time.  It can take your breath away with such vigor and such emotion.  It was peace.  It was perfect.  Above and beyond anything that was accomplished during those 12 days, most of which I have to admit I remember only vaguely, the lasting impression of importance taken with me as we left Cimarron to head home which I have kept with me now 20 years later is the fact I was able to walk every step of that trek with my Dad.  You see it may not be that we have to get where we're going at all, bit instead profoundly relish the people we are simply walking beside and looking forward with...tired legs and all.

Last weekend Polly and I packed up the car with sleeping bags and suitcases for all four of us for the first time since June 26th.  We got an invite we couldn't refuse to a family camp about 3 hours away in a small town called Berry Creek about 20 miles northeast of Oroville.  It goes by the name "Camp Okizu" which is a Sioux Indian word translated to mean Unity and Peace.  It is a camp completely funded by private donations, completely free for all campers invited, and exclusively for families with children who have cancer.  It was founded by two men who have been working in the Oncology world for over 30 years, it is staffed by 40+ college kids who volunteer their time (on a holiday weekend no less!), and it has a waiting list of eager participants every single Memorial and Labor Day weekends.

The weekend consisted of three meals a day with everyone in the same large dining hall, singing songs no less to "earn" seconds of food.  The mornings were playtime for T & E without us as the college counselors took them to what was the Taj Mahal of toy rooms (literally every square inch of shelf,counter, table filled with donated games, toys, art supplies....more or less stimulation overload for a solid three hours for a couple of worthy two-almost-three year olds).  While the kids played in the morning, Polly and I were able to sit in group discussions with other parents.  The afternoons were a time for family events such as going to the lake for boating/swimming, hiking, fishing, archery, crafts, or the twins' favorite climbing on and flying down the ropes course amongst the tall trees.  Evening times saw us have a swinging dance party one night and goofy camp fire the next complete with S'mores.  There was never a shortage of smiles and the camaraderie between families was instantaneous.  With the price of admission so steep in one sense, there was not the time to do anything else on this sacred ground other than enjoy the company of so many incredible kids.

When we arrived on Friday, we were placed into a two family cabin.  I would say the range of where each afflicted child was at with their journey was all over the map.  There were kids present who had been in remission for over 10 years, some just off treatment, some like Ellie currently in long term maintenance, a few just recently diagnosed in the last couple of months, and some who very unfortunately will never have the ability to be cured.  The family we shared our sleeping space with just experienced their June 26th a little over a month ago.  I was in awe of their strength to be able to muscle up a trip to the mountains for the weekend.  All things considered,  don't even think I could have comprehended that last July.  Their son, age 4, has the same form of Leukemia as Ellie and so we were able to convey some messages of support for what lies ahead for them in the next few months and share some stories.  Even if it was just a little help we could offer, they were great people to get to know.

Two things struck me on our first full morning there.  The stories being told and the remarkable people in large numbers in the same circle as Polly and I.  At our initial group adult discussion session, the leader in charge kind of laid the groundwork out for what we were to discuss....and that was simply anything we wanted to share.  So, after watching how much fun everyone was having Friday night when we arrived with playing games, laughing, and running about....on Saturday morning, Polly and I one by one heard everyone's story of how their lives forever changed one fateful day.  It was if we were hearing our own story over and over again.  Leukemias, bone tumors, brain tumors, kidney and lymph node tumors.  It didn't really matter what type it was, everyone initially saw symptoms that most (including many docs) passed off as no big deal only to see them persist and worsen.  They shared and we shared.  The stories were heart wrenching to say the least and to say Okizu is well stocked with Kleenex is an understatement.  I started to realize that around the room were members of every major race in existence.  Folks were sharing stories on how their cultural background played a factor in how they have been able to cope (or not cope), how some have persevered through divorce and abandonment for the sake of their sick child.  And then as one person would seemingly start to lose their way with their story due to tears, someone else would speak up to express how they have been through similar times and can relate....not to solve the problem....but just to offer common ground and to walk for a little bit side by side.  If only the politicians out there could see what a true cross section of humanity, bonded together by a problem that transcends cultural differences, can accomplish in a short three hour time span...we might find a bit more peace in this world.

There was HOPE offered in immense amounts.  You see you can attend Camp Okizu once each year for life if you wish and so a few families were on their 9th or 10th year coming over Memorial Day weekend because as their children are now in permanent remission and cured, it remains the most sought after vacation spot many years later because of the friends they see every year and the support they can offer others who are relatively newer to the oncology world.  One mom approached us at dinner on Sunday night.  She had to be one of the few people we hadn't met the entire weekend quite yet, but out of no where appeared in front of us.  She said she knew it was our first time at camp and that Ellie had Leukemia like her daughter.  Her face lit up and said what a huge light awaits at the end of the treatment tunnel so to speak.  Her daughter, now two years off treatment has resumed all activities, shows no lasting effects of the chemotherapy, and is 100% living a normal kid lifestyle right now thriving.  She wanted to convey to us that it is possible to recover completely, something we have heard from friends of friends over the last several months, but there is a much deeper connection coming from a fellow parent who has walked in your shoes.  How she knew us, I don't know....but the extra pep in her voice is not something I will forget nor will I stop thanking her for the supportive words if we see her again next year.  Sort of a unexpected random act of kindness if you will.

On both Saturday and Sunday afternoons, we headed down to the Ropes Course where they run a huge Zip line down a ravine.  On Saturday Polly and I took turns going tandem with one kid and flinging ourselves down the line.  On Sunday, Ellie announced she wanted to do it by herself.  Mind you this was about a 120 yard zip line with a good 40 foot drop below it once in "mid-zip".  But Ellie who has withstood doses upon doses of toxic chemicals in her system for over 11 months now and stands at less than 3 feet tall did not even blink an eye.  The counselor harnessed her up and gave her a push....and Ellie smiled the entire way across.  We were told she may have been the youngest ever to ride the zip line solo.  They've gotta have a bumper sticker or something like that to mark the occasion, right?!  Okizu delivers on its promise to instill a confident bond between everyone there so that we can get beyond our troubles, even for just a short while, and seek out those moments where life is truly being lived.  I know Ellie will come to realize the full situation of what her battle is all about one day, but I just have this feeling her strength of being able to move forward no matter the circumstances has brought her further than we could have ever imagined and it will be there for her to turn to whenever she desires to climb a little higher.

One of the last activities on Sunday prior to dinner was a huge Capture The Flag game for the entire camp.  Ellie and Timmy grew quite attached to two counselors there who were also twins themselves.  Their mom is one of the camp nurses and as a result they had been coming to Okizu for over 20 years.  They were a blessing to meet and take such an interest in our family.  Anyways, T& E saw them on the field and immediately ran off to run around like wild ones for the next 30 minutes while the loosely organized teams attempted to run the perverbial "flag" (strangely a stuffed teddy bear for this game) from one side to the other. It was 30 minutes of about 60 kids running, laughing, screeching, carrying one another, and just having a raucous filled good time.  Many kids were wearing their hats to keep their bald heads warm (hey, I can relate to that!), others who couldn't be as active were with friends they see at camp every year, and many were siblings who in several stories we heard find it hard to get the attention they crave from parents so overly burdened with clinic visits and treatment schedules that often the siblings are left alone.  At Okizu, all of these kids come together on a level playing field, literally and figuratively.  We essentially listened to the music created by all those happy voices playing that game and could sit there for hours doing so.  Okizu created a near perfect NOW.  And if this wasn't actually heaven....it was pretty darn close.  Tomorrow will bring what tomorrow brings, but in that moment they were just kids.  Ellie could hold Timmy's hand and be dragged from one part of the field to the other or run off on her own to see her favorite counselor.  Timmy, who has recently felt a strong desire to have us with him while he plays even in just the living room, was able to come over to the sideline whenever he wanted just to make sure we were still there before happily running back out to the field.  No hospital in sight.  Parents lined up watching the ultimate spectator's sport finding 30 minutes of simple peace of mind.  They were able to just be kids at Camp.

Kitty and Scooby (above) were Timmy and Ellie's favorite counselors

I get back to that moment 20 years ago where I am listening, peering off into near perfect scenery, and finding that completely unique moment where things MAKE SENSE....and NOW to accompany the crickets amongst mother nature's silence, I have the collective voices of hundreds of gleefully happy kids as serene as the night time skyline from those backpacking days. I don't know what turn is coming next for our path, but I'm not dwelling on it as much these days because the pack of amazing people we are walking next to has grown to enormous proportions and we're too busy trying to have fun wherever and whenever possible.  The families and counselors whom we had the great fortune of meeting this past weekend root for each other more so than any sporting team I've been a part of.  With an army like that behind you as we all drove away on Monday morning, I can't help but think about how much harder I want to fight for Ellie as a result.  The cancer journey definitely trumps the 60 mile trek in 12 days, but both have provided a source of empowerment at just the right time in my life to make sure I (we) embrace the people tirelessly moving forward with us knowing we're all more likely to find that little piece of heaven we all see...together.