Solidarity - Day 242

Individual commitment to a group effort.

That is what makes a team work,

a society work, a civilization work.

~ Vince Lombardi ~

If strength is something we can attribute to ourselves, in my opinion it is simply and ONLY because of the shoulders all around us we have been privileged to stand beside, lean on, and be propped up by.  The very essence of a team is the common belief in something greater than yourself and the power within the joint pursuit for that very dream.  All moving parts have to be willing to seek out that which brings progress for the sake of the team.  But perhaps more importantly, the team that survives has members who have attained a self derived daily motivation to ensure their part gets done.  The more I can do for my teammates, the better off all of us will be down the road.  I've been on many teams in my life.  Those that win, those that lose, those that have to get from point A to point B.  With the final outcome never guaranteed, I have found the ultimate experiences who continue to shape both myself, my family, and everyone else around us are taken from the relationships we build along the way and the incredible people we stand with every single day in Solidarity.

I have coached in 240+ Varsity soccer games over the past 12 years.  It is a part I relish but also one I know exactly where I belong when it comes to which side of the line to stand.  That certainly doesn't mean I wish I couldn't, on some occasions, jump out there and help in a more direct manner when things are not going our way.  Standing on the sidelines can be very tough.  And so as I try to learn something new every day from each team I am a part of, I am constantly asking how I can reinvent my methods of support so that it helps in whatever capacity possible bring us out of any adversity that comes our way.  Have I done today all that I can possibly do?  God knows, if I could take leukemia away from Ellie completely and bring it to me to fight directly, I would do it before you could finish reading this sentence.  Perhaps my call to coach many years ago was in preparation for my family's fight to make sure we beat this thing.

Ellie has completed two of the four major chemo days now in this second half of DI.  The side effects from her marathon day last week with the Cyclophosphomide have been subtle but still manageable.  She has maintained her smile for the most part all week which is always a great sign for us.  Today, she went into LCPH and had another LP procedure for chemo in her spine and then had what we hope to be her final insertion of a SUB-Q injection site for the last four Cytarabine shots this weekend.  He blood counts are starting to drop pretty rapidly.  She is neutropenic, so we are back to complete lockdown for a while.  She has labs again on Monday and I would expect her to need a blood transfusion very soon.  She has lost most of her "puffy" look from the DEX steroids of a few weeks back which is great and has maintained an adequate appetite.  Not great on the food front but good enough for now.  We are two Vincristine shots and one set of PEG shots away (to be given on next two Fridays) from completing DI.  It is absolutely amazing that we have come this far.

There was more I could do to show my support and it is something I should have done a while back.  Though she may not see it right now, I know she'll be looking at pictures one day and I'll want her to see that she never took one step toward walking this alone.....and never will.  Besides that, I think it is just plain "cool" to be bald.  :)

Please keep praying we can keep the germs away.  She is at her most vulnerable right now and we have been ever so blessed to be able to make it into our 7th week of DI strong as ever and germ free.

I've learned compassion from my Mom and the worth of a honest day's work from my Dad.  My grandparents have taught me loyalty and my wife shows me everyday the meaning of love.  Ellie, in 2 years 8 months and 20 days, given me more courage than I could ask for in a lifetime.  If going bald brings awareness to her and many other childhood cancer warrior's plight, then I walk forward in solidarity with great pride.  YES, I am wearing sunscreen.  (Amazing how many people are suddenly sunscreen experts when they come across a bald man)  

It is something fairly small in the grand scheme of things but it is something I can do....and I can do right now.  I want so badly to have everything in my power be a visible and supportive daily reminder to her that everything is going to be OK.  While she screams during her Cytarabine shots or bravely gets up onto the procedure table to lie down for her LP without a peep, I hope she knows how much her mom and I love her.

We have big plans ahead, El, so just you be ready.  Chances are Timmy is already trying to figure out a way to turn the car on so to pull it up to the door for you (please lord, let him have grabbed his own set of fake keys).  Once we get to Maintenance in another month or so, we're going out and having some fun.

Halftime - Day 235

Nearly two weeks since our last blog post.  Call it a break in the action and as we see it so often, a welcome time to get away from the battle a bit, sit down, and regroup.  This time of year is always the busiest for me as my team finishes off its regular season with a flurry of games and then in a time span of only a couple of days they must start playing in the post season.  My coaching staff and I constantly find ourselves trying to fine tune a consistent message to motivate despite a roster with more than its fair share of injuries and cold bugs while maintaining the level of play this time of year demands.  And so as we push through and continually seek productive paths toward season long goals, the ability to regroup and maximize effectiveness during halftime is essential.  It's a quick retreat to sacred ground for a team into a safe space where collectively we are unified with purpose, able to take a restful breath together, and then quickly find a common ground again to reignite our resolve before heading back out.

Of course a soccer game only has one halftime.  While I know it is in our culture to want to find the end and resolve a situation for ourselves or for others so that we may move on, this particular battle with cancer, like it or not, will see us seek out and go through this necessary halftime ritual many more times for an indefinite period of time.  No, that is not a call for sympathy.  With my wife as my rock, we get stronger every single day.  Good thing I love listening to (and sometimes giving) a few halftime speeches.  There can never be too many cliches to describe the incredible strength drawn from the brief opportunity to re charge.

Once Ellie turned a corner the first week of February, we have found ourselves celebrating prayers being answered and laughing as much as possible.  Her blood counts had fallen just at the end of that particular week and so the expected start of the second half of DI was delayed so her body could recover.  We've had nearly two weeks of our happy, joyful, sweetly innocent little girl dancing around the room in front of us.  It has been a blessing.  Polly has been able to go to work a bit and she and I got a night out alone for our 5th wedding anniversary last weekend.  We reminisced a bit at dinner that night about the evening we spent 6 years ago to the day for what we called our "-1" anniversary (exactly one year before the wedding) at the Bone Fish Grill in Cary, North Carolina.  I had a bottle of Cab from St Supery (my favorite winery in Napa) that was 10+ years old and I had been waiting for THE special occasion to open it.  I kept explaining to the waiter the significance of the bottle and how I had sat and looked at it gather dust at home for years so tempted to open it.  I'm sure he was slightly annoyed after a while, as I think I toasted in his direction every time he walked by.  He heard about every last drop and even somewhat kindly yet slightly sarcastically asked if he could put the empty bottle in a TO-GO bag so I could take it home.  Life was a little simpler then.  As I was raving, I remember thinking about how I wish that meal could have taken 8 hours like one of these crazy European dinners my friend Mike tells me about.  It is a moment forever frozen in time from what seems now another lifetime ago.  The ability to laugh with my daughter is something I will NEVER take for granted and just gets more incredible with age.  She deserves to laugh everyday from here on.

Ellie qualified for the second half of DI to start just yesterday.  Her ANC had risen from 550 up into the 1300's in 4 days time (Awesome) and so her first day of chemo for the remaining 4+ weeks was today.  Polly took her into LPCH at 7:30am for a Lumbar Puncture procedure which as you know requires about an hour of general anesthesia.  As she begins to recover they immediately hook her up to receive fluids intravenously for her pre-hydration.  The extra fluids are required when you get the Cyclophosphomide chemo drug.  Once pre hydration is done, the drug is pushed into her port over about 30 minutes (along with an injection of a second drug called Cytarabine) and then she must have 4 hours of post-hydration before getting discharged.  During the LP, she also received a temporary Sub-Q injection mini port, if you will, so that  Polly and I can give her three additional shots of the Cytarabine at home this weekend.  We did these during Consolidation about 5 months ago, so should be old hat for us this time around.  They are very painful to go in, but Ellie forgets about them almost immediately after being done.  We will repeat the LP procedure and Cytarabine shots next Friday as well minus the Cyclophophomide and long hours of hydration.  With halftime come and gone, the 2nd half of DI is now here and our final month of frontline treatment is now underway.

With these last two weeks being so great, it is so easy as I have said in the past to get a little carried away and have some of our worries drift a bit further away than normal.  I get a little nervous now when those worries slip too far away.  A week from now, two weeks from now, a month from now....things can always change into an unexpected direction.  Not that I have had much control with any of this, I just seem to operate on a wavelength that demands I stay diligent with anticipating problems before they occur where possible and absolutely before they become major issues.  While I make ill fated attempts to gain control of something that's really not mine to possess in the first place, I guess what I am really trying to do is never again be so blindsided like I was last June.  It is self preservation for Ellie's sake so that she feels as little of this as possible.  The result are feelings that come up sometimes and overwhelm because the worry is too much.

I feel that way especially when we lose a fighting member of our community.  I haven't met most of these kids in person, but there is a connection that brings about a common sorrow if one ascends to heaven before we're ready to let go.  I follow many stories of families who like ours are in similar situations with childhood cancer.  "Strength in numbers" is the philosophy that drives the willingness for me to read on whenever I can.  Whatever we can offer other moms and dads in our situation, I want to do it.  Sometimes its just a simple prayer, but it is something that I CAN do.  I was alone in my car when I found out Ellie had Leukemia while Polly was by herself with Ellie at Urgent Care.  Later that night we were in a foreign hospital room with beeping machines and a steady flow of nurse after nurse.  There was confusion and disbelief.  So, Polly peeks around the curtain and meets Natalie and her 6 month old there overnight for a routine round of chemo.  She offered some words of support and our first parent to parent connection was made.  We weren't alone anymore.  In a way, it was like our first halftime check to regroup on this journey and when we went back out to fight the next day, we were along side twice the number of friends from the day before.  I am feeling heartbroken tonight for the families of Paul and Daniel who both passed this week.  So, tonight I want to offer a prayer asking for peace.  With their physical pain now gone, Mom & Dad deserve the power of God's healing touch.

We also ask that you pray for Natalie's beautiful daughter Lily who, like Ellie, has gone through some tough times in the last month.  No day with cancer is ever the same and as so many prayers were answered with Ellie two weeks ago, Polly and I want every bit of the exact same uplifting strength to go Lily's way.  May she continue to grow and thrive....and fight alongside Ellie so we can all come out of this whole again one day together.

As we push out through the lockeroom doors during every game to get back to the field, I am filled with pride as to how my players handle themselves with class in a variety of different situations.  It is a culmination of how they were raised and the incredible work their parents have done as well as the commonality they have all bought into and decided to play together under the same name.  We're far from perfect with our performances and even the best re-charge possible we may get at a particular halftime never 100% guarantees the result we want.  But if we keep the people we love close together and we move in a productive direction where everyone involved feels they have an invested part, the power and ability to accomplish the goals set in front of us is enormous.  With that kind of support around us everyday, you bet your ass I am excited about the future.  Ellie has been through so much and we have had the last two weeks to count our blessings once again before getting back to the task at hand not to mention the still constant messages of support coming to us everyday in person, through the mail, and in messages through prayer.  It may take years, but our resolve to beat this once and for all remains in front of us with great clarity.  I have this vision of her walking into Kindergarten a healthy and happy 5 year old who knows nothing else other than anything is possible.  With that, I am ready to get back to it once again.

Clear Eyes, Full Hearts, CAN'T LOSE

~ Coach Taylor ("Friday Night Lights")

Relief - Day 222

The first three months of the twins' lives were something of a blur.  To say that Polly and I were thrust into a world we really had no idea about was an understatement.  There simply is not anything any person or book can do to fully prepare you for the whirlwind of newborns.....ours crying in stereo on many occasion.  I think about all of the athletic events I have played in, all of the mountains I have climbed, and nothing compared to the fatigue we had in that first week of trying to figure out how to be parents.  Day by day we found a groove with a small piece of the process.  Soon those pieces began to fit together into daily and nightly routines.

We still laugh about the phases of nighttime feeding that occurred and how they coincided with a particular section of television.  It was much quicker to have both of us feed them at the same time rather than Polly trying to feed both and so we both arose a solid 2-3 times per night in the beginning.  The first month or so major night time feeding happened around Letterman at midnight.  The "Will it Float?" segments were just amusing enough to keep my eye lids open as waking after only sleeping for about 2 hours is probably the next best thing to poking myself in the eye.  In the second month, they began sleeping just a little longer and we now were waking to check out Jimmy Fallon at 1am.  He was hysterical and we even would stay up a few minutes beyond the baby bottles being emptied just to catch the end of the show (this was our "honeymoon" phase).  By month three, they had started to sleep longer hours and now we were getting up for the night time feeding around 4am where mindless bad jokes were intertwined with the previous days news by newscasters that hated their jobs.  By the time the feeding was over, it was nearly time to get up to go to work and sleepily start the next day all over again.  Not fun.  Finding relief in a moment or two of peace was what helped us through.  Those three months were hard and I think character building for us both during our parent orientation/trial by fire so to speak.  And yet newborn life is a cakewalk compared to what we have faced in the cancer world.

Relief comes in many forms these days.  It can be the two hours we have after the kids go to bed which we have to ourselves or it can be that rare night where both of us can sleep for 7 straight hours.  I find time to pause when I am at school and try to just sit for 2 minutes to take a few breaths and listen to the world going on outside the classroom.  Mostly though relief comes from Ellie finding a way to smile and let us know they she hasn't a care in the world when she is feeling good....so why should we?  The burden is heavy to bear but I think when these daily little breaks can happen, it allows us to focus on the moment and where we're going while not dwelling on where we've just come from.

I can't sugar coat this past week.  It has been our living hell.  For seven days (since a week ago Friday), Ellie was either crying, screaming, moaning, or sleeping.  The cumulative effect of the three Doxorubicin and Vincristine injections finally hit her in week 4 of DI like a ton of bricks.  Add on top of the that the nasty side effects of the DEX steroid, and you just have a concoction for misery.  She would wake in the morning looking for food, eat a bit, and then start complaining of not feeling good.  From there she would usually not allow Polly to either put her down or leave her sight for the rest of the day.  Putting her in the bath was almost like we were dipping her in a boiling cauldron and then after bedtime, she would wake about 4-5 times a night so that we both got about 3-4 hours of sleep.  We attempted to get the docs involved to figure out if this was abnormal or if we could do anything for her....and the response was simply - no, this was the expected reactions to be had in DI.  We did figure out her biggest issue was constipation.  Her cravings on this second pulse of DEX consisted of string cheese, croissants, and milk.  Not the best mix to alleviate an already unsettled digestive system.  We counter with a balance of mineral oil, miralax, and warm baths but sometimes nothing works when the drugs are in such full force.  She had to go so bad at one point that she was too scared to do it because of how painful it was.  And so the screaming continued.

I guess in the back of my mind, I knew the end had to come eventually because the steroids would be done by Tuesday and the chemo had left her system in Consolidation after about 5 days from onset of side effects.  BUT, when you are in the moment that lasted as long as it did this time around, you question everything that is happening to her, your heart races in several segments of the day with worry, and there simply is no place to find relief.  How can a parent find relief when your child is suffering with a life threatening disease and there is nothing you can do about it?  Whatever in the world I worried about prior to leukemia is just completely and totally irrelevant.  We turned to one of the only things we could - outreach to family and the power of prayer.

I saw Father Joe in the hallway on Wednesday as I was leaving to go to practice and then on to home.  I was absolutely exhausted and had decided to take Thursday off to help relieve Polly and do whatever possible to find the smallest chunk of relief (even if it was just an hour more of sleep).  He asked how Ellie was doing and I told him about our rough week.  He offered a comforting smile and prayer.  Earlier that day I had received a letter of support directly from the Archbishop of San Jose, also offering his prayers and support.  (Incredible) After Polly's last post that afternoon, several friends sent text messages.  A midst my anger with the situation and fatigue from the seemingly never ending cycle of despair she was feeling, Polly and I found relief from the numerous folks who put Ellie at the forefront of their thoughts that evening.

And on Thursday morning we had our turning point.  After being up most of the night again, Ellie woke up and smiled for the first time in seven days.  She asked for some gnocchi that morning, ate every bite, and then went to play with Timmy as if nothing had ever happened.  WOW.  She was laughing out loud and pushing her stroller around...I had to do a few double takes.  My daughter was back.  On Friday morning she woke up singing!!!  Before we knew it she was ordering her brother around again and demanding he share toys.  I believe in Miracles no doubt and hope that we are on our way to seeing one in about 5 years time when we can say this disease has left the building permanently, but this was a minor miracle moment of perfection.  And it was the ultimate relief.  Prayers answered....and I about gave Father Joe a bear hug when I saw him the next day at school.  God is good.

You move through this darker period like we just had where it would be so nice to just squeeze your eyes shut and wait til it passes.  We realize how vital every single message of support was that came our way and honestly feel that was the single cause of the sudden relief achieved.  Ellie is an amazing little girl.  She is losing her hair by the handfuls this time around.  Every pillow she lies on right now gets a nice dusting, so I think we are heading toward complete loss (she has always maintained a little on the very top....but it appears the DOXO means business this time).  She doesn't care one bit.  Tonight at bath time I even got the fmailiar request to wash hers like I do Timmy, and so she got a face full of shampoo to her utter delight.  Her smile gets bigger with every building block successfully placed on her path to recovery.  Here it is Saturday now and last week already seems like a distant memory.  As I said several months ago, we're dodging bullets here, but we're surviving.

Her blood counts have remarkably remained good through the first half of DI.  She has yet to drop below an ANC value of 900 and has not needed any transfusions.  She is on course to qualify for the second half of DI in her labs on Monday.  If she makes it, we will begin again on Wednesday with a 10 hour chemo day.  She'll have an LP in the morning followed by pre hydration in prep to receive the Cyclophosphomide.  They will insert a Sub-Q (sub-cutaneous) injection site temporarily into her upper arm so that we can give her the four Cytarabine shots (known as the ARAC drug) once she gets home.  The ARAC will make her hemoglobin drop dramatically so we expect the transfusions to start.

We are still germ free and will keep it up as long as possible.  Every diaper change now gets two types of preventative creams and every hand gets washed as often as possible.  Lessons learned from Consolidation a few months back.  Our lone escape with the kids out of the house is up to Polly's parents house and T&E seem to think right now there could be nothing finer (well ,we do have a bounce house up there....OH and "owls" I always tell Timmy to go look on the outside deck for just so I can hear him go "HOOOO HOOOO" into the trees).  It isn't much in terms of what they possibly could be doing if Ellie wasn't sick, but in a way it is everything.  Still too early to tell if we are winning the war here, but if you haven't seen her when she is happy like she has been this weekend, you would darn near consider her invincible.

A player of mine hit a shot on the field during today's game from 40 yards out to score his first goal of the season.  The ball hit the underside of the cross bar and tucked itself into the corner of the net for a stunning 1-0 lead (which we would not relinquish) against our biggest rival on this day, his final home game as a senior.  I could not think of a more deserving kid for this to happen to.  This summed up perfectly how this weekend has been.  Magical moments spark incredible emotion as everyone reacts to the unexpected with joy and hearts full of hope.  For me, the magic this week was in the relief Thursday morning brought.  But even more so, every time something like that happens, no matter how few and far between, I get a burst of energy that pushes me back out there (sometimes I am sprinting) to help her fight again tomorrow....with even more strength than we had today.