Blessed - Day 998

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

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

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

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

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

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

Polly

Stay - Day 945

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

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

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

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

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

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

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

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

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

It is one of those nights

where you can't hold back the tears

for no good reason.

So, we do what we do best

hide and cry for a quick minute or two,

wipe the tears away,

go to your kids bedrooms to read "Tickle Monster"

with a smile and a laugh,

kiss them good night,

then walk with away with the same tears

you had turned off for those few moments with your kids

You all know what I mean...

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

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

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

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

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

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

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 ~