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