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.