Jimmy V - Day 905

If I haven't entitled one of my posts "Jimmy V" before, I'm not sure what has taken this long to do so.  I refer to his words all the time and have somehow connected with his message years after he passed in a way that was not remotely fathomable when I stood in front of the TV in 1993 watching the ESPY awards.  He had a captivating presence, even before that night, that was unmistakable.  The guy could flat out coach.  His words, his actions, his meticulous preparation, and his poise under pressure.  It was motivation to move beyond just simple inspiration.  Much has been written about his improbable run at the NCAA title in 1983 (Click HERE for one my old favorite articles) and you have to know the story to really grasp the foreshadowing for his life a short ten years later.  NC State wasn't even supposed to be in the playoffs that year.  It took an improbable run through the ACC tourney a week earlier just to qualify.  Next up he comes 6pts behind to win in the final 30 seconds in his first round game by a single point, followed by knocking off a couple teams he had lost to handily in the regular season, and capped off with the unimaginable victory by slaying Goliath (Houston's "Phi Slamma Jamma").  He didn't quit and he didn't allow his players to quit.  So infectious was his mood that those who witnessed it up close and personal (I have to admit, I was 7 at the time and not quite the sports follower, so this is research from my adult life) were given a belief that for a few weeks anything was possible.  Jimmy V's never-say-die approach brought with it a relentless work ethic, a lion-type heart, and the ability to dream.  Fast forward 10 years and he is standing at a podium, barely able to walk, and giving a speech to hundreds in the room (which would turn into millions in the years shortly thereafter) with Adenocarcinoma tumors (bone cancer) throughout his body still fighting with a presence as if his strength is near immortal.

Coach Valvano's establishment of the Jimmy V Foundation for Cancer research has now become one of the most recognized charities in the country in this particular sector of causes to support.  And so, every year as it promised it would do from the day his speech was given in 1993, ESPN televises a college basketball doubleheader honoring the foundation's work and ensuring Jimmy's words live on.  Always at the break, between games every year, they replay his speech...and Polly and I together haven't missed it now for four years, including tonight's replay, two and half years into Ellie's battle.  Maybe you'd find it a bit of a humorous scene...the two of us frantically moving around the house (as we do most nights) with dinner dishes to do, laundry moving from place to place (does that ever end?), kids being bathed and readied for bed...and about 6:30 or so on this night (close to the same time every year) the speech comes on.  We stop what we're doing, listen, and wipe a few tears away.  The 'realness' of what this is never goes way.  Ever.  Maybe its about parental control, maybe its fatigue or post traumatic stress....I don't know.  But you are sucked back into the core of what this feels like.  And then you feel a kinship with the message of Hope, a small but but mighty token to keep as we snap back to the never ending nightly search of where Timmy left his glasses or Ellie her stuffed bunny she has to have in order to go to sleep.

This past week was Ellie's first post chemo checkup blood draw.  With her port now being gone for a little over two weeks, she will get blood drawn the way the rest of us do through an arm poke.  She handles this quite well so long as the nurse administering the poke knows what he/she is doing.  Pediatric veins can be tricky, I know, but there are a select group of people we trust in that corner of LPCH and we try to stick to them.

I remember going out the door that morning to head to work thinking as sort of an after thought that this was Ellie's checkup day.  Then in the car the unsettling thoughts kinda begin...."this is how its going to be".  The wait for results is not as anxious as it likely will be for me in a few months.  The closer we keep to a normal routine, the better.  Since October 25th and of course her awesome Gratitude Party where so many people came to celebrate with us, life has been just....well...normal.  Normal as in part of me is being distanced significantly from the harsh months of 2011 and early 2012.  No one would even know by looking at her now that she had been sick.  Not a clue.  It's like I catch myself asking sometimes, "What the heck just happened the last couple years?"  You want to be completely done.  I mean done-done so we can forever move on.  This sort of normalcy we are experiencing right now kinda teases you a bit with that.  And then the checkup days will come.  And we'll momentarily move to the edge of our seats.  My perspiration rate will pick up and that small uncomfortable stomach knot will form while we are waiting, hoping, praying for hemoglobin numbers to be between 11-12 and a white blood cell count that is quietly and slowly rising from a its long standing suppressed state to somewhere in the 5-10K range without going over.  For the Love of God....do NOT go over.

Her blood counts were good for checkup #1, which I think is quality peace of mind for another month.  Somewhat anyhow.  We are still navigating the transition back to normal medical decisions.  She picked up yet another small cold over the weekend and as a good example, I sit here right now listening to her cough on the baby monitor while she tries to sleep in a slightly agitated state wondering myself what may be coming.  Fever spike?  Further congestion? Fluid in her lungs?  How quickly do we act?  I will tell myself to calm down....its probably just going to be a quick cold.    It's a fear of having to jump back to "ready-alert" mode.  Coming out of that after two and a half years was a really nice feeling.  There was closure to at least part of this journey, so it is really hard right now to think about going back.  There are a lot of little things that just don't make it possible to forget.  So, every blood test will be a fork in the road for us for quite sometime.  

One of the moms on our A.L.L. facebook group from the midwest posted a message over the weekend celebrating her son's complete two year remission.  Good, right?  Of course it is.  These celebrations could be better than several birthdays and Christmases combined.  Then I read a little further to uncover more of the story.  Her son was diagnosed at 3, relapsed in his spine at 5, relapsed a second time in his marrow at 8, and had a bone marrow transplant at 9.  The two year anniversary was for the latest remission since transplant.  Incredible for his remission and as I read it....my thoughts immediately went to how incredible it is that her family has been at this in "ready-alert" mode for close to 9 years.  Every child is different, this cannot be left out here, but being 6.5 years possibly behind them is...a little overwhelming.  That's a really long time.  All of these things that this family has had to put on hold or never do with their ambitious world for the better part of 9 years.  It just isn't right.  Many MANY prayers for this to be the little dude's complete remission that never ends.  He very obviously follows Coach Valvano's Never-Say-Die attitude, whether he knows it or not.

Normalcy seems to always lead me to thinking bigger picture.  Where are we going, what do want to accomplish, what's next and how do we prepare?  It is a step away from the cancer world's day to day living style.  I'm not sure how I feel about stepping out of the day to day world even if it seems to you that everything appears normal and on the up and up.  The simplicity of living for today was possibly more fulfilling in the last two years than the several upon several years before it.  How to keep such a mindset while still moving forward with larger plans and not feeling blindsided or seriously hampered by any potential return to an active cancer fighting world?  That's the balance to be found.

I try and will always fall back on what I know.  I know hard work.  I know fighting until the clock hits zero.  And if there was some divine reason that pushed me to watch a little TV the first week of March in 1993 to witness Jimmy V plant a seed that is his greatest legacy as a mentor and a coach, I am forever grateful.  You gather so much information sometimes which you have no idea at the time when it will come in handy.  This is where the mystery of Faith works its magic.  Today, Polly and I laughed, thought, and cried.  We made it beyond Tuesday.  Now that's a day.  "That's a HELLUVA Day".  :)  What if the improbable of someday walking this path completely "done-done" with the cancer struggle is possible?  Or maybe it doesn't ever need to be "done-done" because we can find enough peace in moving day by day that bigger picture items will take care of themselves on their own.  Wouldn't that be ideal?  

I don't have any more answers than the next guy and I certainly fall victim to my own insecurities about things I cannot control in Ellie's world.  But I do know even if I have to nervously sweat out a blood test month after month and try to explain to an outsider what it feels like, we will handle it somehow.  Despite my blog ramblings, we can put it together to get into "ready-alert" at anytime, anywhere, without loss of purpose, resolve, or determination.  Beyond work, sports, relationships, and all of the mindless drama in between, I learned long ago before I knew its full relevance...Don't give up, Don't Ever Give up.  Thank you, Coach V.  We're gonna make you proud.

"We are starting the Jimmy V Foundation for Cancer Research. And its motto is 'Don’t give up, don’t ever give up.' That’s what I’m going to try to do every minute that I have left. I will thank God for the day and the moment I have. If you see me, smile and give me a hug. That’s important to me too. But try if you can to support, whether it’s AIDS or the cancer foundation, so that someone else might survive, might prosper and might actually be cured of this dreaded disease...I know, I gotta go, I gotta go, and I got one last thing and I said it before, and I want to say it again. Cancer can take away all my physical abilities. It cannot touch my mind, it cannot touch my heart and it cannot touch my soul. And those three things are going to carry on forever."

Jim Valvano 1946-1993

(Full Speech Link - Click Here)

P.S.  For my Varsity boys I am privileged to coach right now in my 16th high school soccer season, "Day by Day, We can't be beat".  Thanks fellas...I needed that this week.

New Road - Day 868

Life after treatment has begun.  Ironically, not without its little stark and fragile reminders which I'll get to in a bit, but for now some thoughts in trying to figure where to go from here.  I remember the days around late July of Induction where we started to feel less shocked by everything and more in a routine.  As I wrote back then, routines feel good.  We know what to expect, what to anticipate, and how to respond when questions arise.  The routine puts you on a path where you can feel like you are progressing forward, even if by inches at a time.  I am a big fan of knowing that when a long day's work, regardless of the severity of its trials, ends with a promise of progression achieved then I will have no problem going right back at it tomorrow.  I know we yearn for the endpoint, and in this case the chance for a cure requires no extra motivation to get us moving as quickly as possible, but I have found the routine of progressing inch by inch over the last two and a half years to be a daily thanksgiving of enjoying the present wherever possible.  Now that the routine is changing, I think Polly and I have emerged with of course the expected elation and excitement to jump into the tree tops....but also we have some very real uneasiness and the very understood sentiment that nothing will be the same as it was prior to June 26th, 2011.

There was always this feeling I had when I completed my final exams in college.  Forgive me if I have mentioned this before, but it bears repeating because of the unique perceived freedom you have when that final test is turned in before either a winter or summer break.  It combines the culmination of all the preparation, the relief that a very stressful event is now over, and the realization that we now have X weeks ahead on break with little to no responsibility.  Ahhh, to be naive and in college again!  I loved that feeling.  Liberating, intriguing, and relaxing.  I did not have to turn it "on" again until I picked up that first syllabus the next semester...which might as well be 10 years from right then.  There was the joy of going home for Christmas with no worries.  Sleep, mom's cooking, new years celebrations, maybe even a jog in the cold weather or a trip to the beach just because I have the time.  The feeling was simple, this was now an endless possibilities care free type time period.

We had some nice laughs and a whole lot of jumping for joy a little over two weeks ago when she swallowed that final 6MP pill.  We posted the picture from my last blog post to facebook and garnered 2,668 "likes".  Pretty cool.  We have arrived at a milestone always looked at as a looooong ways away.  This past week, Ellie went into LPCH for a final Bone Marrow aspiration where they do the same heavy duty detection for cancerous cells that was performed on Day 1, 15, and 29 in the critical first month of treatment.  The endpoint aspiration is more a formality to confirm what the blood work has told us for the better part of the last 2.5 years....that she is completely cancer free.  I love our doctor's calm demeanor about it.  He really knows how to put worries at rest even to the point where I wasn't sweatin' this one at all (ok, maybe just a smidge, but FAR less than any prior).  One last item major item remains and that will be her port removal surgery sometime in early December.  This MRD test served as our ace in the hole and our final exam.

How did we celebrate an aspiration calculation of 0.00% MRD (Minimum Residual Disease - and that would be THREE beautiful significant digits there for those in the "know".....sorry, I teach chemistry)  ???  By going home for a quiet evening, dinner, and then....a subsequent fever spike right before bed.  Yes, off to the ER we went.  Ironic?  Maybe.  Humorous?  A bit.  Routine?  YES.  As I told Polly, if there was ever a day to be in the ER, it was the night following a 0.00% MRD test.  Whatever was ailing her, it ain't cancer.  She is actually still struggling with this cold as we speak.  Fever has come back on two different days but it seems to be viral in nature so we hope it will pass soon.  We are trying to keep her comfortable and wait it out as we always do.  The new off-treatment life still has a compromised immune system to deal with for the next several months, so some of the old routine will remain.  The bigger inner fear I have is this scenario playing itself out several months or a couple years from now when we do not have the benefit of sitting on the heels of a recent MRD test.  Low grade fevers, body aches, lethargy all take you back almost instantly to June 26th.  I know better, of course, but that doesn't mean my mind cant stop from going there.

I still feel like this current time period has a few minor chords to it.  There are more times than not where my confidence in the scientific data are all that I need to reassure.  But, it seems I cannot allow myself to be overcome and fully engulfed by the blissful euphoria of the perceived limitless possibilities in the off treatment life.  Something is saying to keep a watchful eye, however hard that will be on some days.  Part of me understands that's probably always going to be a parenting concern, but this is for sure a different feeling than just my fatherly duties.  It is a fear I am going to have to work to get beyond while acknowledging it will always be with me.  We could have to repeat the last two and a half years (and then some) at the near drop of a hat one day in the not so distant future, thus undoing the now miles of accumulated inches of progress from 868+ days.  You say I shouldn't think about it....But I do.  I do and I think if you knew what this journey was like first hand, you would too.  I would trade right now just about anything for that heading home for Christmas care-free feeling if it came with a 100% stamp of guaranteed assurance.  I am going to have to let go of some of this a few months down the road from now I think, but that will take some time.

I want to say a special thanks for the lifelong friends in my life who have found ways to step in and bring messages of Hope and keen perspective to some tough conversation topics.  My buddy Vince put together a memorable toast at the Rose Bowl last weekend, Timmy and Ellie's first ever trek down to meet the full Bruin family (now with several Baby Bruins - Wow!).  As we paused from the usual banter of a gathering before a football game, there was recognition of what a momentous occasion it was to have all of us there in one place celebrating what the human spirit is capable of.  If nothing else, we stay connected to hold each other up as life continues to roll along.  Two nights ago, I also got to catch up with my very good friend Mike over a drink for the first time in over 12 months as he was visiting from out of town.  I owe both of these guys, more than I can express, for bringing opinions and supportive perspectives to the table that lessen worries, keep us all going, and put a lasting importance on our common bonds of Faith we have in one another.

One day at a time.  That has to be and will be our theme.  The stats say relapse, if it is to show its ugly head, will typically show itself in the first year off treatment.  So, I'm going to pray for an event free Holidays, move on to a day by day winter, spring, and summer....and then celebrate again on October 25th, 2014.  We may just have to make that an annual family day to rejoice and give thanks.  I'd like to think our euphoria these days has a more mature buzz to it.  Ellie did pass her final exam this week.  So you could say school is out and we're all moving on to the real world now.  It'll be a new road with some anxious moments and maybe if you'll humor me, I'll vent on this here blog as we have so many times prior.  Regardless, we'll move forward inch by inch with clear eyes and full hearts.

Picture from February 2012 at the tail end of Delayed Intensification

Strength, Beauty, Perseverance, and a whole lot of HOPE.

Milestone - Day 852

There are not enough words tonight to describe the love we have for our daughter.  She has taught me how to live and what it means to Fight the Beautiful Fight.  If every man must be tested to his very soul, tonight I am going to say it feels like after months of crawling, clawing, and hoping....we are finally back on top.  It will be work to stay here as this fight is NOT over.  But, there is absolutely no equal to the power of prayer and the might of the human spirit.  I hope you will hug your own kids today (if possible) for a brief moment.  I'm not sure anything we say, experience, or do is more important on nights like tonight.  Polly and I thankYOU with all that we have for your continued prayers for our little girl.  God is here and working miracles to keep Ellie with us.  I will write more when the dust settles from this momentous occasion, but for now....the picture below leaves me beyond speechless.

"Don't Give Up, Don't Ever Give Up"

~ Coach Jimmy V ~

Rain - Day 820

"The best thing you can do when its raining....is to let it rain"

~~ Henry Wadsworth Longfellow ~~

I'm sitting down again tonight with my old musical partner, Mr Einaudi, to make sense of the day.  The last couple of months have absolutely flown by and with the season's first rain this past weekend, I think fall is officially here.  Two years and three months we have weathered.  So many activities, phone calls, emails, classes to teach, business to tend to, gatherings to arrive at, meals to make, bedtime stories to read, people to talk to and prayers to say.  It can make you dizzy like the perfect storm.  It can center you or it can foolishly mask the underlying purpose of what we're supposed to be doing, knocking you to the floor (good or bad) before you even knew what hit you.  We are exactly a month away from the end of Ellie's chemo treatments and it is hard to make sense of it for me.  We've been looking forward to this date, we've been hoping, and we've clawed with our bare fingernails deeply embedded in this struggle to a point where it is time to stop the medicine and just let faith take over.  But the rain persists.  Sometimes it is sleepless nights or too much thinking or money wars with the health insurance or other stuff unrelated to this battle that takes up so much useless time and energy.  Every single drop is felt.  And so I find myself drawn to the door, slowly opening it and staring at the sound of pavement being pounded.  We have wanted answers for so long.  So very....very long.  I may need a push outside in a month's time but there is no avoiding the inevitable truth that will continue to unfold.  We have to let it keep raining and embrace the potential possibilities where there is no control.  I thought the above picture spoke volumes tonight to what has been on my mind,

With Polly tending to her work schedule this week, I took Ellie to her weekly treatment.  It has been a few weeks since I have sat through a full 3+ hour session.  Today's time in the waiting room brought me back a couple years.  We were initially one of the first folks to arrive and thus got taken back for her blood to be drawn.  This takes about 20 minutes and then you are returned to the waiting room; however, once a month we go down the hall at LPCH for an inhaled antibiotic treatment that is used as a preventative measure for many kids on chemo due to compromised immune systems.  This took another 20 minutes to complete and we walked back to the main waiting room in the Bass center.  By this time many other families had arrived and when you open the double doors to go inside, you cannot help but observe the stunning cross section of our childhood cancer world.  Multiple ages, races, and stages of treatment. There are parents there for routine checkups after years of coming that embrace it like another errand on the day to accomplish in between stops at the store and maybe lunch afterwards.  There are those newly diagnosed who appear white as ghosts, terrified, and uneasy.  And there is everyone in between who take on characteristics of both extremes.  Every parent in there knows exactly what each other is feeling.  It is a startling reality check to those who get too comfortable with the uneasy thought that our kids can be completely cured just because treatment is over and an essential reminder for those who have never step foot in this world before.  If you haven't before, you should.  We as a society are so stunned by single occurrences in our country or those abroad that encompass random acts of violence....and rightly so given the usual circumstances that unfold with them.  However, one step into the Bass center and you will understand harsh stories of equal or greater value play themselves out everyday behind those double doors.  All random acts of violence taking place inside kids who never asked for it in the first place.  We take solace in the fact that we at the very least can soak in the rain together.

It is not always roses, as I know you know, but the appearance of everything going fairly well for us right now is genuine.  Make no mistake, Ellie is more than ready to be released from the weekly chemo routine.  When we finished her Vincristine and Methotrextate shots today, she went skipping out of the clinic to the main hallway and down the corridor toward the exit. (Ok, her version of skipping is more a small gallop, but you get the idea)  It's that joy in her step that allows her to retain the innocence that once was taken from her but has fought like mad to get back.  We have exactly four chemo days left plus a week of steroids after the final treatment day.  She'll have a handful of appointments over the 2-3 weeks afterwards to have end of protocol tests performed, one final bone marrow aspirate, and ultimately her port removed....but the chemo stops October 25th.  Her beautiful brown curls in her hair now reach past her shoulders.  She is kicking a soccer ball with both feet, swimming under water for many seconds at a time, trotting her pony Cherry over the smallest of jumps, and embracing her Pre-K school year with more artwork than I can count.

I am wondering if this overwhelming desire to keep our eyes on the prize to get where we're going isn't just a little bit flawed.  I know the result is important.  So many people so eager to move on from this struggle because it isn't the norm among most of their family and friends.  Not many know what to say when it is brought up in casual conversation, so we turn our attention most of the time to when the final outcome will arrive.  I get caught sometimes wanting the end result too much.  What if this journey was more about bringing me to these moments like today where I am witness to miracles in the waiting room?  What if it is supposed to be about getting us to the next family gathering...without a care for what comes the following Monday when work resumes?  There is some peace in finding the present all that you need.  Be Here, Be Now, look up....and breathe deep while the rain falls drop by amazing drop all around.

We're scared.  What else is there to say?  I know you can offer shoulders and helpful advice.  None of that will ever cease to ease our worries.  Thankyou!  But the persisting fear is something Polly and I have to face with time.  With the end of chemo comes the end of a security blanket of sorts.  Up to this point we have had all that goes into hope, love, and faith....and we have had some pretty powerful cancer killing meds too.  Week by week, we have watched Ellie's marrow get fortified, strengthened, and put into a position where it is as ready as it will ever be to stand on its own again.  She is nearing that point, now days away.  We have prayed, we have loved, and we have put our faith into God for what's next.  She will have to do this on her own now.  It has to work....it has to.

It has to.  Please, PLEASE....IT HAS TO WORK.

About 10 days ago, we had an announcement at school over the PA.  One of our beloved graduates from the class of 2012...a student of mine his senior year....who was diagnosed with a brain tumor when he was a freshman in 2009, had beaten it a year later, and now was enjoying the summer following his first year of college at UC Davis....had relapsed.  It is that stark, gut wrenching reality.  And maybe you say it isn't healthy for me to hear these things.  Maybe not.  But I have told you I will never turn a deaf ear.  It is the reality we will have to confront head on after treatment, be it how to live cancer free without worry or whatever other outcome comes our way.  It is a cruel burden, but I tell you it is fought and pushed by the wayside with an understanding of what the Present means.  The end of treatment does not signal the end of our plight.  It is a major benchmark and not a day thereafter will be taken for granted.  Please pray for CJ.  His parents, I'm absolutely certain, are doing everything they can to make this second go round of treatment a hopeful one with nothing but endless possibilities.

One of the remarkable aspects of landing at a catholic school to teach at 8 years ago is that I have a built in daily reminder of faith...and readily available resources to explore that faith.  Whatever master plan unfolded for me when grad school ended put me here for a reason and I don't think I would have made it through some of the days of the last 2+ years without it.  We begin every school year with a faculty retreat and this year was no different as we ventured up to the Jesuit retreat center in Los Altos on a picture perfect August day in the bay area.  We had 6 options for prayer sessions of which we could attend two of with our allotted time.  I chose to further explore this idea of the "Centering Prayer" which has been a bit of guiding tool for me that I can always use more time with.  For me, there has to be a concentration and comfort on not hearing anything while we pray.  I always have to have the radio or TV on when I am at home....I call it multi-tasking while Polly calls it unnecessary (she's right, of course).  Still, the silence is something that requires a keen focus and so not doing it very often leads me to difficulties in centering, if you will.  You have to be OK with not expecting a voice in return and you also have to find a way to slow your thoughts down to almost nothing.  It is you, maybe a view, and your breath.  One breath at a time.  Deep, purposeful, and calming from inhale to exhale.  Be Here, Be Now, Be Present.  We were asked to write a few notes afterwards and I don't like to share those very much.  But, to end this tonight, for my own peace of mind to close off a day like today where the struggle seems so very real again even when for the most part everything went very smoothly for Ellie....and because shedding a few tears while typing has been very necessary and theraputic to get me back to a productive Tuesday tomorrow....here was the result of my image staring up to the sky trying to make sense of the rain:

There is Hope in everything I try to do.  The promise of God is that it will unfold on his time.  Patience is needed as is the recognition of one breath in between.  The joyful story centered on that breath will examine how the life it empowers gives off a present beauty embraced by Hope.  I know it is ok to struggle so long as the intent stays true to heart.  We'll get there, eventually, but not until I figure out today.

~ JP    #love4ellie

Truth and Needles - Day 763

Most of the time we are on the up and up.  That could be a perception we lead ourselves to believe is true because we so badly wish it a reality when we are granted another hopeful day.  I'd like to think about it as guarded optimism.  This is in fact the case for a majority of the current time that goes by.  But the human factor creeps in every so often to remind me of our mortality and ping me in the side like a miniature but deliberate needle.  The poke is inevitable and inescapable.  I cannot give you glowing words of hope every time I write because it would not be an accurate picture of every moment of Ellie's journey.  The darker moments where many cannot comprehend as fast as we can what potentially devastating domino effects lie ahead show up unannounced and a midst a recurring fatigue that 2+ years into the fight never completely goes away.  My coping mechanism is to vent in a productive manner, ideally.  I run.  I bike.  I swim.  I have a Rocky training montage screaming through my ipod...and I tear the track apart.  Is that too cliche?  Frankly, I don't care.  It works.  Tonight, however, it is time to put words on paper in hopes that this blog can be my temporary punching bag.  I know a lot more people read this blog that I would have ever expected a couple years back, but I have always maintained it has been a tool far more beneficial for Polly and I than anything else.  So, time to vent.  Mom, you taught me well and I promise to keep my language clean as much as I can.

We have three months left of chemotherapy.  Three months from a two and a half year treatment protocol.  By itself, that's amazing.  We are so...so close.  One viewpoint would suggest the shackles are about to come off allowing for more freedom than we ever knew we really had.  We get glimpses of it as Ellie has started to grasp so many normal things a 4 year old does with vigor!  She now claims the superior swimming ability over her brother in the pool, shoots baskets with accuracy, sings songs from memory from the radio when we drive around town, and initiates games with a certain sly understanding of how to position herself to win.  I know you want to believe this can all be a distant memory at some point.  I want that more than you could ever possibly imagine.  Ever.  But we are also watching her body start to suffer some longer term effects of the chemo drugs with pain in her legs, an enlarged stomach that comes and goes with the prednisone, and mood swings that often are unexplainable.

Steroid pulses come in 5 day segments and occur once a month during Long Term Maintenance (LTM).  She takes two doses per day typically from a Thursday thru a Monday.  We have seen steroid weekends where she skates through as if she wasn't sick at all...and then we see weekends like this one where the steroids have completely taken over her every move.  She becomes lifeless with her movements, clings only to Polly, is inconsolable when irritated (which is often), and does not want to do anything except sit and stare.  This is our world on some days.  Our near catatonic daughter drugged out from everything beyond her control.   What the hell? (Sorry, mom) WHAT THE HELL?!  Yer gonna tell me that we signed up to be parents like everyone else with open arms to the endless possibilities of what children can bring and while experiencing it all, we would unexpectedly have to "deal" with this cloak that smothers and confines our spirit (temporarily yes but unrelenting nonetheless) with no end in sight.  One misstep off treatment and she will have to repeat these two and half years, maybe more.  It sucks.  It is unfair.  And if I could find a tangible object that represented leukemia to its core, I would commit the rest of my days to making it an un-object.

The human factor.  It is the part of me, perhaps all of us, that makes it so very hard to surrender some days as I mentioned in my last post.  Many do not understand.  I know that and do not fault the inability to grasp an environment they are not in day in and day out.  How could they possibly know?  I am keenly aware of what it is like to be unaware because from the first day of my adult life thru June 25, 2011 I too did not understand....and that needle will poke me again when I learn of the next diagnosis within our little cancer world as it always does.  There is Hope (of course) and Resolve and Perseverance.  I know this.  I know, I know, I KNOW.  But I want you to understand what it is like to see my little girl's eyes today as she painfully asks to lay down and then fights for a comfortable position to lie in because her stimach hurts so much.  You see her eyes fixed beyond my own and into an unknown arena beyond.  She knows not of why this is happening.  She knows nothing of what may lie ahead.  Still though, she represents the very best of this world not yet jaded from her current predicament.  Leukemia can Piss Off.

One of the treats I had as a kid was to go to a baseball game with my Dad and/or family.  Dodger Stadium was fairly easy to get to and affordable by 1980's standards.  Ironically, this November is the 25th anniversary of one of my all time favorite sports moments when I was huddled around a radio during a youth church retreat listening to Game 1 of the World series in 1988.  We were not supposed to have any sort of outside devices with us during the weekend, but c'mon people....this was the friggin' World Series.  Kirk Gibson had injured himself earlier in the playoffs and the Oakland A's had one of the best closers in Baseball pitching the 9th inning.  Gibson limps up to bat as a pinch hitter and hits a game winning home run with now that famous trot around the bases with a waist level fist pump for the ages.  Our church group suddenly became a lot more prayerful that evening.  WOW.  You need to be able to witness the unbelievable sometimes.  It can motivate you for years to come.  Looking back, one player always sticks out to me.  Mickey Hatcher.  No matter the game situation, score, predicament, or whatever....the dude would sprint as fast as possible to and from left or right field when the Dodgers were not at bat.  When he walked after 4 balls in a game, he would sprint like a madman to first base.  He hit only one home run the entire 1988 regular season.  When Kirk Gibson went down with an injury, Hatcher took his spot in the starting lineup and hit two home runs during the World series that helped propel the Dodgers to the title.  He saw his opportunity and he took it.  And if that opportunity had never come, he still would have been sprinting to his position during practice earlier in the afternoon, I'm sure.  This is Faith in possibility.

We have to keep going.  It is painful on days like today.  I want to be looking forward to another year of preschool, not dreading what those first few blood tests off treatment will be like in November.  I want to tell you I don't scream WHY in my thoughts before I go to bed some nights...but that would be a lie.  When she goes off treatment in October, we will have reached a bench mark but not the end point.  The next 2-3 years will be perhaps the most crucial of this entire fight.  There will be no more drugs, just living, hoping, waiting, and praying.

Perhaps part of tonight's frustration comes on the heels of our awesome vacation to Disneyland last week.  We were able to head south for the first time since Ellie's diagnosis and went to meet Mickey with my parents, Poll'y's parents and my sister's family.  Timmy's eye surgery was a big success and he was healthy enough now two weeks later to get back to running, jumping, and playing.  Disney was absolutely awesome to give us a special pass that allowed Ellie (and the rest of us) to go to the front of the line for all rides she was tall enough for.  We met princesses, rode the carousel 8 times, ate some Big Thunder BBQ, allowed Timmy to suggest we go to the Rockets ride next 20 times over, and experienced the new Cars Land in all its Disney glory.  Ellie met Minnie Mouse and Timmy fulfilled a lifelong 4 year old dream....He met Light Buzz.

To Iff-nitty and Bond!

Yeah!

And both kids actually survived Splash Mountain

with Timmy swearing he will never go on it again. :)

The return to reality has been tougher than I thought it would.  With summer school, hospital visits, and various other things the summer does not feel as restful as it should be with a new school year just three weeks from now.  The fatigue of what we deal with and are reminded of nearly everyday wears on you like kryptonite...complete with a staggering stumble to your knees when you have to see Ellie experience pain like today.  To do anything other than stand here and fight like mad would be absolutely foolish.  But, to expect me to do it without a little complaining would also be slightly silly.  Better here in the blog so I can rest more peacefully.  Disneyland, as it promotes itself to be, is a bit of a fairy tale world.  It certainly was nice to forget everything else for a few days and join in the magic, however commercialized it may be.  My kids deserve to have memories like those stick with them for years to come.

So, the needle persists, but I've always thought the extra-ordinary effort of sprinting to position, especially when no ones looking, will pay dividends down the road.  It has to.  The poke doesn't pack much of a punch with consistent forward thinking.  With all of these setbacks and peaks/valleys through 2+ years (and 5-6 more to come), we need to hold onto that which is Truth.  Truth of Purpose and Truth of Love.  I am going to tell you that days like today will ultimately make us stronger despite the tears in between.  There is absolutely no denying the Truth.

I want to make a special mention again of friends of ours who are fighting the courageous Leukemia battle in Charlotte, North Carolina.  Justin Solomon, now 19, was diagnosed two weeks after Ellie.  He had a bone marrow transplant in the winter of 2012 and though cancer free now, is fighting many complications from that transplant.  He is in need of a kidney transplant now and with a lot of prayerful HOPE in the coming weeks, his incredible MOM, Jennifer, will be able to be his donor.  She knows, even more so than Polly and I, about how hard this road of constant day by day struggles is.  The two of them make up one of the strongest and inspiring teams I have ever had the privilege to be a part of (even remotely).  Maybe one day, Justin (a very good baseball player - drafted by the Rockies don't cha know!) can show Ellie how to throw a curve ball.  I can say right now, she definitely has the Wild Pitch down pat.  We are in urgent need of some pitching diversification (you laugh, but my wall fixtures are slowly and mercilessly losing the battle).  You can read about Justin's journey on facebook - search "Prayers for Justin".  We could not be prouder to be walking this road with them.

Ellie's last Steroid pill for this course is tomorrow night (Thank God).  She has two more 5 day courses to take before she goes off treatment and then with any luck, we will never have to have days like today ever again.  Please pray for that possibility.  Every single word of support, spoken or unspoken, brings us closer to a cure.

Thanks for listening to me vent.   #love4ellie

Surrender - Day 750

I've been reading Father Joe's autobiography, The Four Gifts, as of late (which I highly recommend) and spending time reflecting on lessons learned along his path which in part permeate down to our journey.  The subject matter and specific context is different but it has a familiarity of common themes that ring acutely true to our own adverse times.  With every bump, every hospital stay, each surgery, the tense phone calls with insurance representatives now too numerous to count, the restructuring of work schedules to meet medical schedules, and the financial burden that follows it all....there is stress, worry, anger, frustration, impatience, and perhaps most of all there is fatigue.  You wonder when is enough...enough?  I try to rationalize where various feelings should go when the next disaster strikes and while decisions on that front get made regularly, there is always an overwhelming feeling on if the chosen way we go about things is the healthiest in the long run.  I think we're keeping up OK, but the doubt still remains.  Have I done enough?  Have we researched enough?  Could we try something new?  Are we doing enough in the NOW to satisfy a life we have worked so hard to get back to but know can be ripped from our grasps at any moment?  Why do bad things keep happening?  Why us?  Why?  This thoughts will drive you nuts.

The damn milk was spilled a while back.  Heck, the two gallons sitting in reserve in the fridge have sprung leaks as well.  I may not have all the answers all the time, but I am quite aware that sitting here crying at the mess in front of me is an incredible waste of time.  I know this and I relearn it on a regular basis.  Doesn't mean I won't go back to some of the aforementioned questions again tomorrow when my son takes his turn under general anesthesia and we sit helplessly waiting for a positive outcome while we meddle in rare surgeries with no assurances in sight that this will produce a better outcome.....because no one can say for sure and I am not the one who has the power of the scalpel.  But I do know better.  Eyes have to come up from the puddle below, fully intent on focusing now to the horizon beyond, and they must be willing to surrender.  If we can surrender our fear, our angst, and our worry....therein lies the ultimate Faith that will guide us through.  Even though I do not believe you can ever say to a cancer patient that it is "going to be OK", fully embracing God's love and finding peace from releasing the burden of worry brings those very words to the tip of my tongue.  So, this week I am surrendering (again).  When properly done, there isn't anything we cannot handle through Faith and the specific, extremely welcome, sense of calm that comes along with it.

Where to begin with this past week.  Polly's Dad had what was supposed to be a routine procedure for his heart late last week.  This quickly evolved into a series of unexpected complications that stopped us in our tracks for most of the week as he spent about 5 days in the ICU.  There is so much time spent focused on the cancer fight that it is very easy to forget how the slightest change to the support system can really shake you.  We are elated that he has improved steadily over the past couple of days, was moved out of ICU last night, and if all goes well tonight he will be discharged tomorrow.  If there was ever a reason to be thankful on a 4th of July in recent memory, this is most definitely it.  Just in time as well for our next big event.  Timmy's big eye surgery.

I don't know if you recall but Timmy was born with a rare genetic eye condition called Blepharophimosis, or otherwise known as BPES.  The basics are this - he was born with a nonperforming muscle that is used to open his eyes causing his eyes to droop (known as "Ptosis"), his overall eye socket width is significantly smaller than an average person, and the inside lower corners of his eyes contain an extra piece of skin called a "epicanthus inversus". While there is not complete remedy for making his eyes look 100% normal, the goal is to use plastic surgery to manipulate the muscles he does have so that he can have normal eye opening function, as close to regular appearance as possible, and keep his eye sight at 100% (which it is now).  If your pupil is covered more than halfway for a significant amount of time, your eye will begin to shut down.  When he was 6 months old, we elected to have a silicone sling surgery performed from a renowned pediatric oculoplastic surgeon in the Bay Area.  This attached his eyelids to muscles in his forehead allowing him to open his eyes and fully expose his pupils.  He has learned to use these muscles extremely well.  But we were fully aware the slings were temporary because his entire head and facial tissue was growing rapidly as a young kid.  So long as his eye sight was OK (he does wear glasses for a slight astigmatism), we would want to hold off until he is 5 or 6 to do the permanent surgeries which involve epicanthus corrections and a permanent sling using fascia from his own leg.  Our most recent trip to the eye doc revealed his eye sight had begun to worsen, unfortunately, as the silicone slings are getting too relaxed. We are now in a tough spot because the surgeries have to happen a about 18 months earlier than we wanted....and of course during a time when Ellie is still on active treatment herself.  There was a concern the desired permanent result may not be achieved since his face is still on the young side and thus the worries surfaced this past two weeks all while trying to get a grip on Polly's Dad's status.

Thankfully we were put in touch with another pediatric surgeon who specializes in the epicanthus surgery up at UCSF.  At the first call it was going to be two months until we got in.  And then Polly does what she does so well on the phone.  Kick some ass.  Sorry to be blunt, but it's true and if you have seen what we have seen from 2+ years in the cancer world, you would understand that being nice sometimes is just not in the cards if you want something done on certain days.  We were seen two days later and surgery (which is only performed on Fridays with this doc) found a cancellation we could take the place of tomorrow morning.  So now it is my boy's turn to put on his brave face.  Unlike the surgery at 6 months, he knows fear now and we have been trying to prep him for it all week (ice cream for dinner tomorrow night if anyone wants to come over).  You know its funny, my biggest worry coming out of the twins birth, long before cancer entered the picture, was that Timmy was (and still may) get some unwanted comments thrown his way about his eyes from other children.  We figure this may show up around 2nd or 3rd grade.  But the worry is so much less because Ellie is right there beside him.  (Quite honestly, no tormentor of Timmy will ever want to mess with Ellie on steroids...Polly and I don't mess with Ellie on steroids)  Her own battle has made her stronger than we ever thought possible.  Timmy draws strength from her now even though he may fully recognize its value now.  Twins will never allow themselves to be very far apart.

It does not matter how routine surgeries get between both our kids.  Having the doc come wheel them out of the prep room from us and saying goodbye is a horrible, gut wrenching feeling.  If we experienced it 100 times, the emotions would be the same.  Neither of them ever did anything to deserve these early life struggles nor the vast amounts of normal childhood they have missed because of it.  There again is the call to Surrender.  Oh no, not to give up by any means.  This is the call to know that following those 3-4 agonizing hours in the waiting room tomorrow and that step we must blindly take from one side of this to the other, there will be the start of a better life for our amazing child.  And he'll get to see the world with eyes wide open, the way it was meant to be.  We're praying for a successful day tomorrow and patiently waiting for Faith to guide us on what the next step is after that.  I'm surrendering to God so that the worry of that next step is minimized and I may freely and more powerfully concentrate on that hug I'm gonna give him when he wakes up tomorrow.

The second night at Camp Okizu during family weekend is always set aside for a dance party.  The staff does an awesome job of converting the patio in front of the main dining hall into a large dance floor complete with lights, props for decorations, huge speakers for music, and a DJ.  Having a large walking boot on my foot and only losing the crutches a couple days prior at that point precluded me from taking part in the festivities.  (BTW, no more boot now.  Walking normal again after 12 weeks since my own surgery.  Still not running or playing soccer, but all in good time....believe me I am extremely thankful for the ability to just walk).  Anyways, during this year's trip I was fortunate to bear witness to a pretty amazing moment in time.  One that captures the essence of Okizu perfectly and reaffirms all of us parents of childhood cancer patients that there is a light down this road somewhere.  We may not see it, but its there.  A couple we had met earlier in the weekend told us of their story which began with them marrying and wanting to have kids soon thereafter.  Both were new immigrants to this country, both worked full time out of necessity and both had very little spare time because of demanding work schedules.  They tried for several years to have a child and for whatever reason, they could not.  The pain and anguish in her representation of how long that part of her journey seemed was evident in how she hung onto the words that described the sheer elation she felt when they finally were told their miracle had happened seemingly months before they were about to give up for good.  Nine months later they became official parents only to find out their newborn son had down syndrome.  Seven years in the making, they clawed their way through and found a wonderful life with a very dependent young boy.  A few months before his 8th birthday, their son was diagnosed with leukemia and underwent the same protocol that Ellie is on now (only for boys).  3 years of chemotherapy came and went, he was in remission and all was well.  They were out celebrating one afternoon another month gone by to his new found freedom being off treatment.  The whole family had gathered for his birthday.  As she got to this point, her voice started to quiver (there is no shortage of kleenex at Camp Okizu).  Just after returning home from the party, they received a call from the doc that his latest off treatment blood work came back with signs of relapse.  He had to now repeat the three years of chemo all over again.  One thing after another after another.  It hits all too close to home.  But on this dance party night, two counselors scooped him out of his seat on the steps near where I was hanging out and took him down to the floor.  Flanked on either side by folks helping him get his dance groove on, a smile larger than life came across his face and stayed there for the duration of about three entire songs.  And standing about 10 feet away, capturing it on iPad video, was his mom with a smile of her own and tears of joy streaming down her face.  As one of my colleagues said a few days later when I was describing the scene to him, "If that wasn't Jesus smiling with him, I don't know what is."

You have to take these moments and fully immerse yourself in the beauty of their simplicity.  There may or may not be more of them ahead.  It has to be about Now.  Learning from each other on when to let go of fear and compounded stress is an absolute gift.  I think pain is inevitable in what we've been through and I know I am at fault for giving into the stress of our day to day on many occasions.  Ultimately these battles are going to be won by our kids and if surrendering to a trust of blind faith is what it takes to facilitate victory, then count me in.  COUNT ME IN.

Besides, now that my foot is healed, we got a lot of dancing to catch up on!  Please say a prayer for Timmy tomorrow, Polly's Dad Randy getting discharged, and always always always a few words for my sweet Ellie Belle.

Earlier today at the Redwood City 4th of July

Parade and Fireman's Pancake Breakfast

My daily reminder as I arrive to work.

Call it our own "Play like a Champion Today" sign if you will
hung near the lockeroom's entrance ~ Many thanks to Coach Walsh

Words to live by

The Joys of Summer - Day 741

Two years ago today, our lives changed in an instant.  We are so blessed to be where we are today, with two vibrant four year olds enjoying every minute of life.  We are well aware that life could change again in an instant and are truly embracing our summer.

Neither Jeff nor I have had time to post lately, which is a good thing…it means we have been doing fun things with the kids. 

The end of May brought the end of the most wonderful first year of school for Timmy and Ellie, and me as a working parent in the classroom.  While I hope Timmy and Ellie will have many more amazing teachers in their careers as students, Teacher Kathy (their main teacher from this past year) will always be at the top of the list.  She taught them and us so much and we are truly grateful for her guidance, love, and support. 

First Day of School, September 2012

Last Day of School, May 2013

Memorial Day weekend we drove up to attend family camp at Camp Okizu.  This was our second year attending family camp and just as it was last year, it was the most amazing, wonderful experience.  Timmy and Ellie’s favorite counselors Kitty and Scooby (whom they talked about since the end of last year’s camp) were there as well as many families we met the previous year.  I don’t quite know how to describe the camp experience, but the love and support you feel at camp from all of the counselors and other families you meet is truly unique.  Timmy and Ellie spent every moment they could with Kitty and Scooby…and these amazing women fully embraced them each and every time they saw them.  Some of you might remember that last year Ellie did the big zip line all by herself, well this year Timmy made sure he was the first one to get on that zip line by himself.  They both soared through the trees with huge smiles on their faces.  We are so grateful for the opportunity to attend Camp Okizu and for all the wonderful memories. 

Ellie, Timmy, and Scooby

Timmy, Ellie, and Kitty

Upon our return home from Camp we were immediately thrown into birthday preparations.  Timmy and Ellie celebrated their 4^th birthday Mary Poppins style with all their friends at my parent’s house.  Timmy had been asking for a bounce house with a slide for months, and so the bounce house and piñata were the big entertainment for their birthday party. Timmy insisted on wearing his "Bert" costume to the party, while Ellie wanted to make sure she had a chance to wear her "party dress" from Gigi.  

They truly enjoyed their cupcakes!!

Since their birthday we have had at least one and sometimes two birthday parties to attend every weekend.  To some this might seem like a lot, but for us and them it has been so much fun.  We are so lucky to be in a community at our preschool with such wonderful families. 

We have also enjoyed ollaliberry picking and jam making with Gigi as well as daily swimming lessons at Serra and much more frequent trips to the barn. 

One of Ellie’s best friends from school has long dark brown hair and she frequently wears it in braids.  Ellie has been asking me when her hair would be long enough to braid, and while it is really growing a lot, it is still pretty short.  However, this morning we managed to get two French braids on her.  While I still need to work on my braiding skills (it has been a long time since I did a French braid on a horse’s tail!) she was thrilled with the results as you can see in her smile.

As we move towards the end of Jeff’s teaching summer school, we are tentatively planning our first trip to Southern California since Ellie’s diagnosis.  We are keeping our fingers crossed that she stays well so we can travel. 

Ellie’s counts have for the most part remained stable since the last post in May.  Her GI issues seem to have cleared up and thankfully for the last month we have only been at the hospital once a week. 

As many of you know, Timmy had surgery on his eyes when he was 6 months old.  We have known that subsequent surgeries were in his future, however we had hoped he would make it another year before needing one.  After his vision check last week, it became apparent that the time is now to start those surgeries.  Thus, he will have two surgeries approximately three months apart with the first one scheduled for July 5^th.  Thankfully they will be on an outpatient basis at UCSF. 

If you could please keep Ellie, Timmy, and my father who is going in for surgery tomorrow in your thoughts and prayers we would appreciate it.  We hope you too are enjoying your time this summer! 

With love and blessings,

Polly

Carried - Day 693

"Even to your old age, I will be the same,

And even to your graying years I will bear you.

I will carry you; And I will deliver you"

~ Isaiah 46:4 ~

It is hard to ask for help sometimes.  It is even harder to make an appeal for help that may or may not come in the desired time frame we seek.  The answer requires patience and a big helping of some blind Faith.  The struggle in between represents the reoccurring test where perhaps coming to a conclusion in the present tense is not the ultimate goal.  There will just be another test next week.  Its been like that ever since I left college....where I naively thought exams would end once my classroom days were behind me.  We are pushed to some varying limit every single day in some way shape or form with periods of time where it seems to pile on.  And on and on as has been the case for us these past couple months.  I find I am forced to take a step back into my thoughts and commit to a self study that examines priorities and my interactions with others.  If I am to grasp onto Faith with clear eyes and a full heart waiting for answers far down the road, I need to have earned my way there.  The relationships we build and the people we connect and travel with in countless circles will ultimately be the branches of help we reach for in times of need.  If I have not done my part in creating each circle or committed to the intent to do so, I'm sure I should not even bother to raise my hand.  There is always the worry I have not done enough, but this is where the blind faith pays you back even if a conclusion still hasn't arrived.  Polly and I have found in these last two years that often we were being carried long before we ever had to ask.

So, I can't walk.  No, I mean I literally cannot walk....going on 6 weeks now.  Polly has been keeping up the blog for us as I have been trying to keep my surgically repaired left foot above my head to avoid this completely alarming shade of painful purple it turns at night when it isn't elevated.  Some two months ago, I made a very regrettable decision in a soccer game (as a player this time) to challenge for a loose ball with the inside of my foot exposed.  I got the ball, the other guy got my foot with his studs and I limped off with the injury.  Two weeks after thinking it was a bad bone bruise I went to get an X-ray because though I was walking mostly OK, I couldn't run at all.  X-Ray revealed a broken/cracked navicular bone in three places and surgery for a small screw insertion to pull the bone together was scheduled two days later.  Long story short, here I am now still non-weight bearing in my 6th week post surgery.  I use a loaned knee-walker to get around my classroom (Thank you, Dave) and combo of crutches plus lots of hopping to get around the house.  I crawl up stairs on my knees, am unable to carry much of anything, and have been about as useless around the house to help Polly as I can ever remember.  Polly is a Saint, to say the least, and about the toughest person I know to handle everything with the grace that she does.

The timing of my foot could not have been worse, coming right in the middle of Ellie's stomach issues.  For that, I feel guilty because of the undue stress placed onto Polly with everything that has to be done in our house on a given day/night, especially with the many night time screams, moans, and upset stomach sessions Ellie had been enduring.  But then we had that fateful 12 hour day at LPCH almost a month ago roaming between 4 departments seeking answers for what she was struggling with.  We criss-crossed the long Stanford Hospital corridor six different times and met every deadline put in front of us with 7 different doctors.  It was something out of a movie in parts.  Here was my little girl undergoing test after test at a place she thinks of as just another activity in her week (like her swim and gymnastic lessons).  She never cried once except to say she was hungry, she never complained we were there too long.  She sat face up with a multi-million dollar radioactive isotope detector covering her body inches from her nose without a peep.  This is the same girl who has worked her way back from having 95% of her blood filled with cancerous leukemic blasts two years ago followed by the most horrific medicines you could imagine having to inject into a 2 year old...yet she still found her way back to being cancer free and clear now.  That day at LPCH was a turning point for this latest mountain we have had to climb and Ellie led the way.  She carried us.  Answers were found for more questions than we started with and we found a way to survive....like we always do and always will.  I think about how much we can possibly still have thrown our way at one time or repeatedly over longer periods despite all that we still face now.  But there is this somewhat comforting feeling that exists from seeing Ellie be her stoic self at the hospital every time and knowing that if we ever got to a dire situation, faith through numerous vehicles of "help" has now on multiple occasions shown us the way through.

We want to say a very special thank you to our beloved pre-school community.  About a month and a half ago, a train of food started coming to our door every night for a few weeks when finding time to make dinner by the time work was out and to meet Ellie's chemo window was a near impossibility...not to mention my one legged kitchen work just isn't the same as that on two.  The twins' amazing teacher was nice enough to lend me her family's spare car which has an automatic transmission so I could still drive myself to work (my car is a stick and without a clutch pushing foot....you get the idea).  On hospital days, we have several folks who are willing to take Timmy to school so Polly can get to LPCH and I can make my first class at Serra.  Everything takes twice as long on one foot in the morning for me.  And most of all, there are so many dear friends who asked about Ellie on a regular basis while she was out of school for the better part of three weeks.  The Co-Op environment for a pre-school setting is very unique and now after being in it for a full school year, I'm not sure why you would want to do anything else.  It is a wonderful family to be a part of....and one that is willing to carry you without reservation when it is needed the most.

My players and I talk a lot about those moments in games when adversity seems to be rearing its ugly head singing a potentially insurmountable tune and the desire for a leader to come to the forefront and "carry" the team on his back is needed now more than ever.  But a true leader on the field who can command respect simply by his performance without words does so by making everyone else around him better.  The needed injection of new life to a team can come from an individual aiming to spread to his community or from the community aimed at an individual.  In essence, we take turns carrying each other because we will all get a lot further than trying to gut it out without help.  The "piling on" is manageable because of the company we keep and common goals we share.

Ellie took her final does of the eurythromiacin last Thursday.  This was the antibiotic med that she had to be on to stop the effects of the gastro-paresis.  She was taking it for its side effect which is increased stomach motility.  As Polly said in an earlier post, within 24 hours of taking it following that marathon day at LPCH, she was instantly better.  The worry then became how would she react after she was taken off the med.  There was an unknown in this entire equation because no literature exists to suggest how absorption of the chemo meds Methotrexate and Mercaptopurine are affected by having an antibiotic in her stomach at the same time pushing things faster into her gut.  Thus, the eurythro was stopped sooner than it might have been for a non cancer patient.  She has been off of it now for a few days and all looks great thus far.  When the stomach ailment had reached its peak, she went on a chemo hold because her blood counts had crashed.  Protocol says you slowly work your way back up the dosage chart while recovering.  She is currently at a 75% dose strength with all signs pointing to her moving back to 100% by mid week.  She has a lumbar puncture coming up soon which will also begin her second to last three month cycle of chemo.  I have to say, I know it isn't ideal for her not to be on 100% chemo for everyday possible of LTM (Long Term Maintenance - final phase of the chemo therapy treatment protocol for A.L.L Leukemia) but I love seeing her blood counts shoot up to almost non suppressed values.  Its like her body cannot wait to be whole again.  Soon enough.  We reach the end of treatment in less than 6 months now, late October this coming fall.

Ellie and Timmy have two weeks of school left, as do I and then it will be summer time (Hooray!).  On the horizon is our second annual trip to a little piece of heaven called Camp Okizu.  Ellie has mentioned more than once that she will be doing the Zip line again - BY MYSELF DADDY!  I also get the green light from the doc to take my first steps again the day before we leave to camp, so it will be a celebratory weekend in more ways than one.  Both kids are getting so good at swimming now.  Each earned a progress sticker this week for being able to swim the length of the pool while doing 8 unassisted "up-faces" in the water (holding breath, lifting head, breathing, repeat).  They jump into the deep end and now seem to be regular fish.  I too, in the last four weeks, have traded my now dormant running shoes for a swim suit and towel so I can do something active while recovering.  In fact I look forward to it everyday after school now.  There is something very relaxing about the water while still getting the heart rate up to a solid cardio level.  Really makes me miss the times in high school down in Long Beach where my buddy Lee and I would roam through the waves on several summer evenings and watch the sun go down at the same time.  I cannot bring my iphone music and headphones into the pool, so for 45 minutes, it is just the calming sounds of water rushing by alternating with the peaceful silence below the surface.  Sometimes there is no better feeling than going home from work exhausted but completely relaxed.

To adequately describe to you how the euphoria of relief feels after getting past a prolonged episode like this spring has brought us...however carrying with it the underlying knowledge that we can be plunged back into it or another dark corridor at a moment's notice is and will forever be impossible to do.  Only our fellow childhood cancer parents know what that is like.  It creates days on occasion that bring us both to our knees.  I know I am never going to be able to fully pay back everyone that has carried us through these tougher times.  Instead, the self examination of how earning those branches comes about means to me that I must push my limits with my endeavors.  I need to continue to teach and seek professional learning communities within the teaching profession that challenge everything.  Teaching is paying it back and paying it forward at the same time.  It is what I can do with both an indirect and often direct benefit to Ellie fighting the beautiful fight.

I made early enough to school several days ago to a weekly Thursday morning Mass in the Serra chapel, knee walker and all.  From my car to the Communion table I had two students unprompted open the building door and then again in the hallway going to the chapel for me, my colleague Sally made room for me next to her in the second row even though I was late, and Father Joe said a prayer just for Ellie.  All in a 10 minute span to start my Thursday.  We are taken care of.  God has a nice way of nudging us toward that full embrace of blind Faith, but it is only possible because when needed we are carried to it and carried unconditionally.  I know the answers will come in His time.  Until then we are so thankful for everyone who offers us help in getting to where we need to go.

Mary Poppins, A Practically Perfect Mother's Day Celebration - Day 688

Mary Poppins is one of Timmy and Ellie's favorite movies.  They know all of the songs and dances, have both the soundtrack and DVD and we are in midst of planning an upcoming Mary Poppins birthday party.  Several months ago we purchased 4 tickets to see Marry Poppins the musical in San Francisco.  After purchasing the tickets, I wrote to an info email address for the show asking if there were any opportunities to meet Mary and Bert following the show.  Quite honestly, I didn't even expect to get a response but thought it was worth a try, knowing how cool it would be for the kids to meet them.  Not only did I get a response, but I met two amazing people who work for Disney and gave Timmy and Ellie a truly magical experience.

About a week and half ago, a package came in the mail for Ellie and Timmy with a letter from Mary Poppins and Bert telling them how excited they were to meet us.  They also sent along our own backstage badges with the kids names on them...to almost 4 year olds, a badge you get to wear around your neck, with your own name is a HUGE deal.

The instructions had us show up at the stage door following the matinee performance as we were seeing the evening performance later.  We were to arrive at 3:15, but as Jeff will tell you, I'm early for everything and this was certainly not something we were going to miss for being late.  So we arrived early, and it was a windy day in San Francisco.  We walked over to check out a farmers market and were stopped by two different sets of tourists who really wanted to take pictures of Timmy and Ellie.  Ellie had been given a hand me down Mary Poppins costume and I had been able to make a hat for Timmy and found a great lady on Etsy who rushed to make a shirt for him.  The two of them were quite a pair walking through the farmers market.

We then waited in front of Stage Door 1178 with our badges ready.  Since we had to wait for at least 20 minutes the kids started asking what the hold up was, and Timmy declared that he thought Mary Poppins hadn't arrived yet and that the wind was a sign that she was arriving soon :)  He and Ellie then proceed to examine all the windows up above that were open to try to figure out which one she would be flying in through.

Then Brad, the assistant company manager who helped make this day possible, arrived with goodie bags for the kids and a real Mary Poppins umbrella signed by the whole cast.  Timmy (who loves umbrellas) immediately took it and started examining it to see if the parrot on it would talk like Mary Poppins' does.  He then led us onto the side of the stage as the final act was performing.  As the final curtain came down we were ushered onto the stage to meet the whole cast.  Ellie was a little nervous at first, but Timmy took the lead and gave Mary Poppins a big hug and Ellie quickly warmed up to her.

Following the meet and greet with the cast, we were escorted out and treated to a fantastic Mother's Day meal courtesy of the Mary Poppins show at a restaurant a block away from the theater.  It was a fantastic meal and a real treat for my Mom and I.

Ellie and Timmy sat on the edge of their seats for the entire 2 hour and 45 minute performance.  The highlight was watching them sing along to "Let's Go Fly A Kite" with huge smiles on their faces.  On our walk back to the parking garage, Timmy was searching the sky to see if he could see Mary Poppins flying away.  He saw a white light and exclaimed "Mommy there she goes!  I wonder how she will land with her new family?"  to which Ellie responded "Oh, I think Brad (the assistant company manager) will help her."

We have been so blessed throughout the last 23 months to be touched by people's acts of kindness and support of our little Ellie-Belle.  We are so grateful to the Mary Poppins Disney production, and in particular Matt and Brad from the production for giving Ellie and Timmy such a magical evening and the experience of meeting the "real" Mary Poppins and Bert.

Tomorrow is chemo day for Ellie, we continue to pray for good counts and that her chemo can resume to 100% of her dose.

With Love and Thanks,
Polly