Home - Day 426

Hold on, to Me as we go,

As we roll down this unfamiliar road,

And although this wave is stringing us along,

Just know you're not alone,

Cause I'm going to make this place your home.

This is a happy post, so put your Kleenex away, you won't need it.  We are weaving a story of success today and intertwined among the strands that will bend, but never break, are moments where strength and hope merge into one.  I still maintain it is a guarded optimism, but it is optimism nonetheless.  We look forward more or less because it is the only place we can go.  I know most could probably never imagine their child's life with cancer.  I'm not sure at this point we could imagine ours without it.  But it is something I can make peace with everyday because I am still watching Ellie grow up.  Her tenacious smile that takes over a room when she walks into it and her uncanny ability to persevere through many things the rest of us would cringe at make everyday with her a blessing.  Some days, time stands still and we can just watch her twirl around the room, chasing or being chased by Timmy, and giving me a reason as to why I am supposed to be right here, right now as if there was never an alternative to consider.

School began for me this past week and like a familiar friend that always shows up on cue, I kinda like the routine the fall schedule brings.  It is a new beginning with a chance to fulfill new ideas and ambitions on many fronts.  A new set of students and of course the promise of a challenging season on the pitch just three months away.  I will probably tell you differently in early March, but I could walk the sidelines for months on end.  The never ending cycle of preparing, executing, and analyzing has its long days, but the daily fight along the way is where the fun lies.  I think the underlying theme behind a lot of what I love to do is the ability to progress everyday.  Many days we go nowhere, but the potential to move forward is there as soon as that alarm clock goes off in the morning and so the dream is alive.  BTW, "Alarm clock" comes in so many different forms in our house....most notably Ellie's bellowing, "Dadddddddddy, I readygidout.  READYGIDDOUT, DADDDY!!!" sixty seconds before the actual alarm clock sounds.  (How does she know and will i ever get that one minute back?!)  Her voice is a welcome start to a day that fuels, motivates, and provides a little chicken soup for the soul.  As much as I want to guarantee the future to her of decades to come so she can grow and experience EVERYTHING, suddenly I am wishing she could stay 3 years old indefinitely. 

This particular fall despite I and my ventures, Polly and her now ability to get back to her law practice on a much more regular basis, the routine we are both most anticipating is watching Ellie and Timmy thrive in their first real outside environment at preschool.  They deserve to be average kids even though we will always see them as much more than that.  Today at lunch we had a discussion based on a question Ellie had asked about a friend of hers at LPCH who had her port removed a while back because she had finished all of her chemotherapy.  While Timmy wanted to know if the port would ever go back in, Ellie wanted confirmation that it had in fact been taken out and the circular discussion always coming back to same points continued.  It's kinda funny how curious they both are.  We discuss ABC's, Elmo, pushing baby dolls in strollers (she now is saying she wants a "Big girl" stroller for Christmas and will gladly give Timmy her old one to use if she gets it) and we discuss ports, chemotherapy, and growing hair back just as much.  I enjoy our talks but am loving what's ahead for them with new friends and teachers where ports are not the norm.  Both of them are so ready for this!  Timmy has asked for and received a notebook where he writes his homework down.  Tonight we all got stamps as they conjured up some game between themselves where everyone's hand had to be stamped with a different color.  While Polly and I just watched, they organized the "stamps" (colored blocks) so that every person had at least two color choices before hands were duly stamped.  During bath time, they conspired in an attempt to dump the entire liter bottle of soap out of its container as soon as Polly turned away for a moment.  Afterwards they chased each other around the living room til they were out of breath for rights to slide on an old changing table we were going to be tossing out.  To finish the night off, synchronized somersaults on the bedroom carpet!  Ellie has been the master of the gym floor for a few weeks now but tonight she applauded as Timmy finally completed his first end to end somersault with out falling sideways (though trust me he will tell you he's been doing them right for months).  They have each other's backs.  For all the potential that the next chapter this fall will be bringing with it, the joys experienced on days like today fill our house with a rich overtone of life.  We are centered with faith, hope, and love at Home where few things can interfere.

Our race to support Camp Okizu is two weeks from today.  I am hoping the excitement in my words are popping off your screen right now as we are elated to have met our fundraising goal of $4000!!!  (and then some).  I ran 5 days in a row last week and I think the adrenaline derived from it all channels directly from Ellie doing so well.  She even managed to beat a cold this week that included the use of 3 boxes of tissues and overcoming a cough.  Her body is fighting things off as it should be.  She has done more than her part, so its time to do mine.  The goal was to run the 5K in 24 minutes.  Last Tuesday, I set a personal best of 23:30.  Much to maintain in the next two weeks but I may just go for that 23min mark.  Why the heck not????  I have so many people to thank for donations and promise I will get to you by race day or soon thereafter.  We'll take pictures and put a few up on the blog.  I cannot tell you how much your support means to Polly and I.  In the cancer fight, its so important to feel like you have the upper hand.  It's momentum, it's motivation, and it's hope.  You keep going and you find a way to go places with your family you never thought possible.

Coach Wooden has a great quote from his tremendously moving library of thoughts, "Be quick, but don't hurry".  It means to do the right thing, learn to do it quickly, but don't lose control and especially don't lose sight of what's important.  Finding order in chaos can be a daunting task.  When answers are not abundant and period of uncertainty have set in, I think its best to return to what we know.  I've been scared to say this for quite sometime because I don't want to jinx anything.  Given my search for answers and demands I've thrown God's way a few hundred times in the past 400+ days, I know my thoughts could never and will never have a negative impact on Ellie's plight. So I am going to say it - She is beating this thing.  She equalized a year ago July and she is firmly in the driver's seat now.  If you want a success story from a 3 year old girl whose only hope this afternoon was to ensure her friend had her port removed so she could celebrate being done with chemo, you've got it.  We've not let ourselves slip in the thought that this is all far from over, but after weeks like these past few where she is suddenly swimming near full lengths of the pool, teaching her brother how to do a somersault, dancing when she hears a song she knows come on, and laughing everyday....my god, we have our daughter in front of us full of life and growing up.  Polly handles Septra and Zofran duties (antibiotic and nausea meds) while I tackle the 6MP (chemo) every night...and we both sit on pins and needles with most Friday blood tests....but we can easily slow down to watch the magic of what's in front of us right here at home.  As our experience has grown on how to do this (and believe me there is no book to help), our resolve has increased exponentially.  We are ready for what's next.

I think back to my freshman year in college.  I was fortunate enough to travel with band at UCLA and accompany the basketball team to Seattle for the Final Four that year (1995) where they ended up winning the national title.  With about 3 minutes left in the game, UCLA led that season by one of those "JC" type characters you read of in books named Ed O'Bannon who hit what was his 3rd or 4th 3-pointer of the game to put the Bruins up by enough where the game was just about out of reach.  Something clicked at that moment.  The nervous adrenaline changed to more of a giddy excitement.  I turned to my buddy Dave on my right, put my hand on his shoulder, and said "We're gonna do this!" Being a fan, there's no such thing as direct involvement in making a ball go through the hoop but the air of invincibility that night was apparent, infectious to us all, and priceless in the moment.  Everyone felt it and was a part of something special.  I'm not going to say I won't have more nervous adrenaline in the next several months....but I'm starting to find my reserves of giddy excitement again.  She is doing it.  She's winning right now.  I thank God for that and her near14 months of being cancer free.  My Bruin family will understand a phrase from 1995 that applies right now in 2012 like never before - YEAH BABY!!!

The lyrics written at the beginning of this post are from a recent popular song by Phillip Phillips called "HOME" which Polly and I have really enjoyed listening to when the kids are asleep in their beds and we can have some down time with each other in the evenings.  It is a beautiful song.  I'll leave you with the rest of the song below.  Be quick, but don't hurry this week.  :)

Settle Down, it'll all be clear

Don't pay no mind to the demons

They fill you with fear

The trouble it might drag you down

If you get lost, you can always be found

Just know you're not alone

Cause I'm going to make this place your home

Settle Down, it'll all be clear

Don't pay no mind to the demons

They fill you with fear

The trouble it might drag you down

If you get lost, you can always be found

Just know you're not alone

Cause I'm going to make this place your home

~~HOME by Phillip Phillips~~

Polarity - Day 411

A relationship between two opposite tendencies can be seen as having a dipole.  This sums up some of our days in a lot of respects.  Thankfully, most of the summer has been on the positive side of things and we keep busy with fun activities, family, and lots of smiles.  Every now and again however, even my strongest side slips back to thoughts of cancer's wicked side when everyone else has left the room or said goodbye for the day.  Impossible to ignore, I always think it is better to try to work through it rather than push it aside til later.  The problem is the process of "working through it" has a way of gnawing at your patience and faith which can be unhealthy.  I look to find a balance for Ellie so she sees smiles again when the sun comes up tomorrow but there are no instructions on how to do this everyday over such a long period of time.  We are teased with natural moments of joy from watching the twins grow as they should be doing....yet reminded every so often through so many of the families we are fighting alongside of the cruel non-discriminating force that can reach in and change everything in an instant.

Since I last wrote, we have been trying to soak up the remaining weeks of summer.  Both kids continue their blitz on the water with swim lessons and are now swimming close to the full width of the pool where they go every Thursday.  Timmy still believes he can make any length of swimming he wishes in one breath and longingly eyes the water baby class going on next to him where they get to float under a tunnel (there are no tunnels in the slightly "older" kids classes - yes, I was crushed too).  But he does very well to root Ellie on as she copies what he does including pulling extra toys into the pool when the teacher isn't looking.  Ha!  On a different note, we had to say goodbye to the only nanny that T & E have known in their lifetimes last week as her and our expectations for the fall were not matching up.  A shame to say the least, but these things happen. We have been interviewing like crazy since for a replacement and think we have found someone who will be able to provide the same type of stability we want from our potentially very up and down weeks as we move towards them starting pre-school very soon.  Change, of course, is inevitable but we are very weary of how much change happens at once.  School days will bring about a new schedule and an exposure to a lot more germs for Ellie.  While I will never buy into any sort of safe haven theory where we would deprive her of the right to do something she richly deserves to experience as a normal 3 year old, I know the stakes are higher for her in doing just normal daily activity.

A quick update on our family's efforts to support the Feather Falls Run in a months time....I did my first time trial for the 5K and hit a mark of 24min26sec.  Doing my best to keep up a regimen of running and biking four days a week in addition to playing soccer.  We have raised 94% currently of our $3000 goal in just two weeks.  I aim to and WILL beat both of those marks.  I have at minimum 27 seconds to take off of my time and am hoping to eclipse the $3K mark by several hundred dollars.  Your support of our fmaily means so much to Polly and I, I cannot tell you how heart warming it was to see some of the donations fly in.  IN case you missed it a while back, here is the link to the Causes site to see how we are doing or to donate if you still want to do so:

http://wishes.causes.com/wishes/474222

This week has been filled with daily trips to the annual Menlo Charity Horse Show where hundreds of the top Hunter/Jumper riders, owners, and trainers from all over come to cap the summer showing season in Northern California.  Polly has grown up attending this show with her mom, competed in countless divisions and won some of their very prestigious classes in years past on her horse, Papillion (aka Sarah).  With our efforts for the past year being focused on Ellie's treatment and missing the show completely last year due to being in and out of the hospital, we were hoping the kids could make their riding debut this week.  The first possible event a young rider can do is called the "Lead Line" which is for kids 6 years and under.  Polly rode in it many years ago and so to be able to get the twins dressed up and on horses today for their first Lead Line was something special.  There was an underlying feel of family tradition, pride, and sense of accomplishment by overcoming that filled this rite of passage of sorts which I was so lucky to witness today.  Here's a quick snapshot of Ellie right before she entered the ring earlier today....with confidence and a determined demeanor that mirrors her mother in every way.

The difficult part in experiencing the joys of today are that it fills you with sense of an unlimited future without reservation if you let yourself go and just stop thinking.  I know that isn't such a bad thing as it allows for our family to create another connection of past, present, and future which of course brings that little extra emotional bond.  I returned home today though to hear of another fellow cancer patient passing....making that two in the last two weeks with the latter being a little girl with A.L.L.  In both situations, there was a period of about 1-2 years remission prior to relapse and as things progressed thereafter with both achieving a second remission, ultimately it was complications of a compromised immune system due to increased chemotherapy and bone marrow transplant issues that took these two sweet girls to heaven.  The number of problems that can come about may often show up with the cancer cells no where in sight.  Wow.  With Ellie now in here 13th month of remission, I hope I don't have to point out to you the window of time in this journey we are now in.  The polarity existing today is tough to take in such big doses during a very short time frame.  I somewhat equate it to being in a marathon and passing the 26th mile marker knowing the end is actually no where in sight.  I want to see more Lead Line classes, dammit.  I just don't think that is too much to ask.

I've been reading a book on Mentor Leadership by Coach Tony Dungy recently.  He has got a wonderful knack for tying in aspects of values he sees are central to an effective leader with Christian values and stories of tangible experiences to prove his points.  I admire his seemingly mastered ability of "situational" leadership (though he would humbly tell you he will always have a long way to go to master anything). The many forms a person may take to approach an individual or a team are well understood beforehand and employed carefully, based on the existing circumstances, so to appreciate both the delicacy and the urgency of where they both must now go together from here.  He talks about the essential aspect of getting into the trenches, digging alongside with everyone who he hopes will ultimately follow him, and then cements it with a reference to the book of John where Jesus washes Peter's feet despite Peter's protest.  And Coach Dungy also makes the point that "Faith, simply stated, is belief put into action.  Faith in the process and faith in the mission makes a difference".

I struggle with not letting fear win out on days like today.  Our resolve to fight daily is not in question, so I think I've got the entrenched positioning down.  But, doubt and uncertainty run rampant some nights.....and it is EXHAUSTING.  I don't know who decides which kids get to live and which ones don't.  I am trying to remind myself that Faith in what we're doing has a long term goal in mind which is potentially not fully recognizable yet.  And so we wait while enduring weekly blood test results and injecting poisonous chemo drugs into Ellie which could have severe long term health effects even if it takes care of the cancer as intended.  We wait and try to enjoy today amid thoughts ranging from one polar opposite to the other.  It is very much a bit of a personal hell on several nights....but then again we have mornings like today where she smiled so big and so proud while riding her horse that I just cannot fathom how this mission of ours could end in anything other than complete success.  Please, God.....PLEASE.

I hope you will do me a favor tonight and keep our dear friend Justin in your prayers tomorrow at church and beyond this week.  He is fighting his battle with Leukemia right now at Duke in Durham, North Carolina and while the cancer is still staying away, his complications from a Bone Marrow transplant have intensified.  We try to send support through his mom over text messages and emails.  There is just nothing fair about a seemingly endless string of hospital stays with new twists around every turn.  Justin has shown tremendous strength of character through his battle and inspires our own plight everyday.

Things obviously will never be easy.  Despite our protest, we kinda know to expect this which on most days is actually fine with me.  Bring it on.  Even if the marathon hasn't ended yet.....I'm still running.  One more excerpt from Coach Dungy I wanted to share talks about Psalm 23 and days like these...

"You get out of the frying pan in the middle of the day only to find yourself in the middle of the fire. God doesn't promise life will be easy but he has promised he will never leave us.  Do not continue to struggle with baggage that weighs you down and hinders your progress"

Trying my hardest tonight and keeping the Faith while working myself through it.  Please pray for Ellie's continued good health and undeniable loving touch everyone feels when they see her coming.  I wish I was as strong as she is.

PSALM 23

The Lord is my Shepherd;

I have all that I need....

He renews my strength....

Even when I walk

through the darkest valley,

I will not be afraid,

for you are close beside me....

Surely your goodness and unfailing Love will pursue me

all the days of my life,

and I will live in the house of the Lord

forever.

Paying it Forward - Day 393

I'll never forget a fellow cancer dad I came across several months ago while reading up on one of our online support forums through the LLS message boards.  His son at age 4 had been diagnosed with the same form of Leukemia that Ellie has (pre-B ALL) several years ago.  He had successfully endured his son's ALL treatment protocol (which is 3.5 years long for males - 1 year longer than for females) but not without the pain and suffering that comes along with dragging your family through a sustained nightmare.  His son was now 11 years removed from treatment and about to graduate from high school.  Like a breath of fresh air, he keeps participating in group discussions on the board to offer advice, insight, and most of all hope that there is a light at the end of the tunnel (which is fairly bright for him now and his dear son!).  Anyways, after he answered a question on the ever popular topic of "How do I best comfort my child when **insert your favorite chemo side-effect here**?", a reader posted a response asking why he sticks around on these boards so many years later.  His response?  He felt it was his duty to aid other cancer families in anyway he could much like folks who swarmed to help him so many years ago.  He said he is always thinking of ways to Pay it Forward.

It is time for us to help.  There really isn't a choice here.  We embrace the opportunity to help because we understand what it is to be recipients of that help when you are struggling to come to terms with knowing the life you had before cancer is gone....and never coming back.  Ellie's form of Leukemia has gone from a 1965 mark of 4% survival rate to now 80-85% in the year 2012.  It's because there have been tireless people who have set aside political and special interest agendas to find a way to raise funds that aid forward thinking research, development of new treatment protocols, and support systems for all family members of the innocent kids who have been robbed of their childhood.  No contribution is too small nor insignificant.  We fight this disease with no division of race, religion, ethnicity, or political views.  It is a human problem where my ignorance in thinking "It will never happen to us", that changed with a short phone call on June 26th, has put the perspective in place to fight the beautiful fight on behalf of Ellie with crystal clear clarity.

Please....PLEASE join me.

Polly and I have decided our initial event will be the Feather Falls Run in Davis, CA to benefit Camp Okizu on September 9th.  We chose this event as our first one because Memorial day weekend of this past spring was perhaps one of the brightest spots of our journey yet since life changed a little over a year ago.  It is a place where kids can dream big, find commonality, and run with the wind at their back because for a short few days....they are truly free.  It is also a gathering of a small cross section of the parenting world where folks can lean on one another while taking a break from the grind of work, kids school, and weekly trips to the hospital.

There is a 5K run I am going to do in the morning FOR TIME followed by a family 1K run in the afternoon for all four of us.  Our goal is $3000 dollars and we know we can reach it.  I am setting a 5K time of 24min 30sec as a goal.  If we can exceed our fundraising mark of $3K, I will lower my time I promise to beat to 24 minutes even with an eye on 23:30.  You have my word.  Since mid April, I have run and biked a combined estimate of ~475 miles.  I've dropped 15 pounds and still have a goal of 9 more to go to reach what the doc says is my ideal BMI.  It is the best shape I have been in since I was 16 and trying to find anyway possible onto the Varsity soccer team in high school back November of 1992.  During these last few months on my runs, one of my favorite things while running around the track at Serra is making the turn at the 300m mark away from 22nd Ave.  There is always a tail wind that picks up behind me in the same spot everyday.  It is like the 2nd wind everyone looks for in the 4th quarter when your body wants to hit a wall while your mind is searching for the will to dig deeper.  If Ellie can beat cancer, I can keep running.  That's all the motivation I need.  You will see 24 minutes get CRUSHED on September the 9th and then it will be on to the next event (Marathon????) soon thereafter.

We have set up a fundraising page through "Causes" which will send the money directly to Okizu.  To support our efforts please pass this message along to as many people as you can.  The link to donate through can be found by Clicking HERE.

Or if you are the copy/paste type use this link - http://wishes.causes.com/wishes/474222

Your donation is secure through this site and completely tax deductible.  This fight is an aspect of our journey where we can do something about it and guarantee results.  How good does it feel to be able to say that??!!!  If words could do Okizu justice, I wish I could give you the proper perspective on just how far reaching this will go in keeping alive one of the only things so many families cling to because often there simply is nothing else - HOPE.

Here is a little extra super-hero motivation:

This picture was taken in June around their birthday.  I updated the photos on the side bar with a new one from a few days ago.  Her hair is now thick enough where you can no longer see her scalp AND she can tell Daddy to stop giving her "Spikey Hair" after she gets done with her swim lesson and I am drying her off.  Her counts rebounded to great levels after a small dip a week ago.  Her ANC is almost 3000 (Wow).  Last Friday she underwent her routine 4th lumbar puncture (chemo injection into her spine) of Long Term Maintenance and finally figured out that she is entitled to a wheel chair ride if she wants it out of the recovery room (You would think she were at Disneyland when the wheel chair showed up).  We are done with LP procedures for 2 months.  Tomorrow she takes her last Predisone dose for this month and hopefully the cranky fits of tears that come on both surprisingly and instantaneously will be gone (Ok, that is probably more Polly and I's hope than hers).  Today we used my first full day off since summer school ended to ride the train up from Redwood City to Burlingame (10 miles one way) and had lunch at a special brunch spot where she found out she likes buttered toast dipped in syrup, eggs dipped in syrup, and bare fingers dipped in syrup (Well seriously, don't you?!?!).  When she is happy, I am happy and it is amazing how empowering a day can be when it starts off on that note.  On days like today, she is simply stunning.

Have I done everything possible to help my daughter today?   I hope so.  Time to Pay it Forward.

Fragility - Day 378

It is very easy to get going on the path of feeling good.  Consecutive weeks of problem free time starts to fade the memories of hardships that may have occurred just a few months ago.  I think its natural we want to move on to a new place and a new time where things can be different, perhaps brighter, but more so with an open end on the potential front.  In the academic world, no better day describes this than the the first moments of an extended summer or winter break after that last exam has been taken or given.  Its liberating because of the work put in to earn the time off which brings justification to the chosen process we've equated to finding success.  I'm such a huge believer in earning every step forward we take.  When I've reached milestones that have taken a good amount of time to get to, there has always been a little kid in me ready to jump up after its over and celebrate the assumed "Anything is Possible" future that comes next.  Call me a Kevin Garnett fan if you will (which says a lot coming from a life long Laker fan).  And, from great achievement often comes the desire to scream from the roof top free of worry with adrenaline pumping through our veins and deserved rest in our sights.  I've had a lot of good days in the last couple of months....but I have to say inside thoughts on this struggle with cancer just never go away.

While Ellie continues to do amazingly well right now and with us in a more normal flow to our days where the harsh treatment of DI and the awful side effects from IM and Consolidation seem father away each day, Polly and I still cannot sleep at night with 100% complete and total ease.  The acutely fragile idea that we have the upper hand on Ellie's leukemia at the moment but could lose our entire grip at any time with a single poor blood test or a simple cold virus is a very tough thing to live with day in and day out.  While our days are good now, we witness almost weekly those lives of other pediatric cancer families changing overnight because something has doctors concerned, become much more complex, or turned a corner where options are wearing quite thin.  In every instance there are a set of parents who have felt like they have been kicked in the stomach for no apparent reason with just about everyone else around them incapable of offering the only thing that can make the ultimate difference - an assurance that we can go to bed tonight without worry and wake up knowing no matter what, anything IS truly going to be possible tomorrow.

We had a really nice time this past weekend being invited by our incredible friends Mark and Sheila up to a vacation home in Geyserville where you did not need to step off the property for the entire weekend as everything you could possibly want to relax and enjoy time with family was right there.  With Ellie not being able to venture more than a hour or two from LPCH's range, we don't have too many options this summer to go away but have been quite thankful for time to spend together in any local location we can.  The kids got to hang with fellow 3 year old twins and play in the pool a lot where I am quite proud to say both had a breakthrough by Sunday they were holding their breath and going under water.  It was awesome to see.  Once Timmy had it figured out, he wanted to dive for the colored rings over and over and so we sat for about 30 minutes in 3 feet of water chasing down ring after ring.  Ellie, who had actually broken through in terms of putting her face in the water a couple weeks ago, saw Timmy actively catapulting his head under the surface and decided she had to as well.  We love that they push each other without any intervention from us.  With each ring lofted high in the sky following an eager and jubilant resurfacing, there was plenty of rejoicing all around.  Cancer lurks in the back of our thoughts on a daily basis, but you will never see us miss an opportunity to celebrate their accomplishments while they navigate their own worlds as they see fit.

Part of the fragility factor that always comes back to the forefront from time to time is coming off of weekend highs like this past one and attempting to get back to our routine only to hear news of a fellow cancer warrior passing or yet another struggling with painful times.  Leukemia and Lymphoma seems to be about a 4-5 year battle before you can say you are out of the woods in an acute sense.  We are still at a relative beginning if you consider the time we have left to finish treatment and then HOPE like we have never hoped before in the fall of 2013 when she goes off treatment.  In the meantime, watching other families being broken down before our eyes in this support community renews our sense of anger, frustration, helplessness, and sheer fear with this god awful disease.  I can only counter with tools I have control over....and that is an equally raised alertness to do what ever we can to offer support and find a way to get through this together.  It is hard to know what to say sometimes but you pray for the strength to just keep going and hold onto to HOPE because ultimately the answers will come in God's time.  And let me TELL YOU how friggin' hard that is the believe day in and day out....but we continue to believe because often it is the only thing we have when life's precious moments are ticking away.

We, as a family, are going to do our first fundraiser and I hope to give all the needed details in my next post.  I may have said that in my last post....but I mean it this time :)  It may be the first of many, time permitting, but it something we can do and do now within our current constraints of Ellie's treatment.  The event is a race in Davis, CA in late September which will send 100% of the funds raised to benefit our now beloved Camp Okizu.  I am going to run the full race and then Polly, I, and the twins are going to do the kiddie 1K later that afternoon.  If you have ever seen a smile that speaks 1000 words, I'll bet you'll see one again on Ellie that day (we'll take some pictures).  Between now and then, I hope you will help me spread the word on the fundraising effort.  Again ,full details on that in my next post once we get fully organized.  I have been running, biking, and lifting about 3-4 times a week for a little over 3 months in addition to my normal 1-2 soccer games per week.  I've never experienced the emotion while working out that I do now.  While I attempt to methodically get myself to a fitness level I haven't been at since high school, I have Leukemia to thank for the motivation I have to not even think about stopping.  Team in Training many very well be in the future, but we'll see what comes our way when opportunities present themselves.  I ask myself "What can I do today?" with hope that someday it will be enough to take away our family burden, support those who fight with us, and provide the relief we all truly want to believe is possible some several years from now.

Ellie's blood counts continue to vary slightly between weeks.  She dropped a bit this week in terms of ANC value and overall white blood cell count, but they told us not to worry.  In my mind from prior experiences, if her hemoglobin and platelets remain high with her ANC rebounding hopefully a bit this next week, then I worry less.  In between visits to LPCH she is just so full of life.  I brushed her hair tonight before bed and was able to make it move in the same direction.  She knows she cannot have any food after 5:30pm due to her 6MP pill she takes at 7pm, so she quietly asks to brush her teeth before bed but promises she'll just use water only (toothpaste would be considered food).  She doesn't question it, she just does it....and then orders Timmy to do the same (who typically is running around trying to complete 7 activities before bed because he claims "Daddy, I have to dooooo this....give me ONE minute").  It might be chaos around here sometimes in our evening routine....but it's OUR chaos, and I wouldn't change it for anything.

A fragile state demands faith in the long term.  The road is too long and too exhausting to go at this alone.  I pray dearly for Caroline's family tonight who were with her as she got her Angel Wings last night.  Dear God, please bring them a healing peace that only you can provide.  The rest of us are doing everything we can to ensure hope is alive and will find ways to learn through her spirit.  I will gladly carry the burden to bed at night indefinitely of an uncertain and fragile future if we can be assured that Ellie maintains her innocent, fun loving, and courageous outlook on life where there is absolutely no question in her mind that anything is possible.

Dear Ellie - Day 361

Dear Ellie,

    I've probably written this letter a few hundred times in my head over the past few weeks and so now finally time to put it down on paper.  I know you'll be old enough one day to read all of this and relive a lot of what your mom and I have gone through over the last 12 months, which I apologize for in advance by the way, but as I know your curiously beautiful mind will have many questions...and perhaps this serves as a method to answer a few.  It will be impossible to convey everything in just one post here, so I am going to put as much as I can down now and promise there will be more letters forthcoming in the future.  Your story and our story evolves everyday.  While we know that the lessons learned down this path along with experiences that run the full gamut of emotion will shape how we proceed with the future, I want you to know that your ability to become anyone and anything you hope to be is entirely now and forever will be within your own control.  Your mom and I will offer, as we have since the first day we heard your heartbeat on an ultrasound, unconditional love with limitless potential to help guide your path.

My hope is that when you can really sit down and read this blog for meaning, you will be at least 12-13 years removed from your last treatment and able to proudly grasp the accolades and responsibilities from being the hero cancer survivor we know you already possess inside you.  I am not trying to put undo worry into your now healthy and happy daily routine, but as I have said many times before - in order to know where you are going, you have to know where you are coming from (Thank you Coach V).  Your mom and I have strengthened ourselves over the past year in ways we needed to be with experiences we've struggled to understand why we've been chosen to take part in.  A year ago from next week will be the first anniversary of your diagnosis.  We marvel a bit on how it seems like another lifetime ago when thinking of the days, weeks, and months prior to that date.  We've talked about it as "back when life was normal" which I suppose makes sense given the context.  When buried into my own thoughts though, something pokes at me to beg I realize the perspective gained to the cancer world has been a calling to a better "normal".  Many days I agree with that, for sure.  Still every so often when we see so many around us doing the things they should be doing to enjoy life, it is hard to know what end result was meant for our forged path forced in a different direction.  However, you need to know that this aspect of adjustment is 100% our burden.  I won't have you lose one day of the life you so richly deserve because of dwelling on what might have been.  You have already overcome much more than the average person and proven ultimate strength and resolve of character when there was absolutely no requirement to do so.  You are my super hero.

I hope music is a big part of your daily life.  I'm sure it is.  As a high school teacher now of over 7 years, I have yet to meet a teenager who doesn't have a playlist he hasn't arranged himself or at the very least an opinion on what constitutes "good music".  I-Phones are the big craze right now.  Call it an all-in-one phone plus music player plus gaming device plus communication machine extraordinaire.  I can't wait to see what you might have in your possession now a decade and change later as technology seems to evolve by second around here.  Music for me over the years has been a method to explore and express emotion when spoken words are either not sufficient or just not possible in that particular moment.  The time of day, the situation at hand, the fallout from some interaction, or the joys to be shouted from the rooftops all bring about different musical ideas.  Certain songs have been ingrained into my head because of moments they were either first heard or where they spoke so loudly at the time I don't remember anywhere else I heard them other than that specific time for the most part.  I hope you won't be afraid to roll the window down on your own road some days and sing along with something that moves you.  If its a song or album that makes you laugh, think, and cry....it's a keeper and worth hitting the repeat button for.  The choice of musical genre for the occasion is a very personal choice so don't let anyone tell you different.  What you choose to express yourself with should always be well within your control including direct access to the play, skip, back, pause, shutdown, and crank-it buttons.  You'll know when to use each without even thinking about it.

Last summer when all of this was so new and overwhelming to your mom and I, it was hard to find a release many days.  We just went appointment by appointment and tried to concentrate on getting our shoes on in the morning to make sure we could keep upright for you and Timmy.  I don't know if you'll ever understand how lucky I am to have "bumped" into your mom nearly 8 years ago.  Our roads merged into a unified path one weekend in North Carolina several years ago when we ventured west from Chapel Hill to the mountains for a fall getaway.  We had just seen this movie Elizabethtown and recently bought the soundtrack so it happened to be in the car.  While we saw the sights, hiked, and drove the Blue Ridge Parkway (with the windows down!), this quirky little CD played over and over again.  I remember the feeling of having life at my fingertips.  Newly engaged, new career on the horizon, (no money - ha!) and new adventures to behold.  The Hollies reminded me that Jesus is the ultimate ally, Tom Petty expressed what it was like to have a clean slate, and The Hombres wanted us to just sit-er back and let it all hang out. :)  More than that though...unbeknownst to us at the time, were preparing for the hope and promise that would be realized when you and Timmy were born.  We also were building a foundation that we heavily lean on today to keep us going.

When you have felt really good following recovery periods of your heavier chemotherapy, you have had this uncanny smile and desire to dance in the living room.  For some reason, you got stuck on Coldplay's "Every teardrop is a Waterfall" and it is now synonymous with the Ellie 2-and-a-half-step.  I've thought this was quite the pairing.  After all, if you are going to have your emotions brought to tears, why hold back with a trickle?  Your mom made this incredible 30 minute pictorial set to music for your third birthday.  PLEASE try to find a copy in one of our old boxes if you don't remember.  It tells a story of survival and has helped define who you are today.  From it you took a strong liking to a Kelly Clarkson song and would always shout "that's my song" when it came on the radio in the car.  You mark my word here, our belief in what you are capable of knows no boundaries.  It has been said many ways but bears repeating today with the force of every living ounce of energy I have...That which does NOT break you will make you powerful beyond measure.

I couldn't even turn the radio on for the first month of your treatment.  I was angry when I was alone in the car and I felt like it wasn't right to try to escape into my own world when you had been given no choice but to walk to a trail head you did not deserve to be at.  It took a couple months but as I started to come out of the fog, so to speak, I looked behind me....I mean really looked behind me.  People were lined up, too many to count, standing ready to fight with us.  I was thrust into a scene I can only describe as breathtaking but not for the weak of heart.  You were and are still equivocally standing in front of Achilles' Greek militia ready to take on Troy and Braveheart's army preparing for the Battle of Stirling.  With a little help from Gabriel Yared and James Horner, I could hear the music again!  The prayer circles that have been told of your plight reach around the world and while I draw silly movie references in an attempt to rationalize it, the point is today you are firmly atop a sea of a million hands willing to lift you up, hand you Roy Hobb's bat, and applaud while listening to Randy Newman describe how you knocked it out of the park without even blinking an eyelash.  Cancer has NOT and will NEVER be able to take away the bond we have marching together with you....and with each other.

You deserve to....dance with Footloose until your feet hurt, hang on every tear drop of Ishtak Perlman's violin, get the LED out when you just want to rock, experience shouting SALT three times with room full of Jimmy Buffet fans, embrace an Easter Hallelujah Chorus, go searching with Bono and I because neither of us still haven't truly found what we're looking for, find a place to be Homeward Bound for so that Simon and Garfunkel can make you feel like its the only thing that matters, Imagine with John Lennon, find Nirvana when its good to scream for a while, and finish the night with a little Louie Armstrong alongside your son or daughter by saying good night with a Kiss to Build a Dream on.  And should doubt ever creep into your mind during a standoff where life doesn't seem fair, just pull out a little Fort Minor and tell 'em to Remember Your Name.  I am convinced you have much to teach others down the road.

Please look out for Timmy.  He has been through so much this past year trying to figure out what's been going on and has a sense for nothing but love and compassion with you.  (Ok, maybe with the exception of when its his turn to choose the Elmo video, but hey if that's the worst thing, your mom and I can deal)  Watching him months ago reach his hand into your crib when you cried so often from being nauseous or lovingly pat your mom's side in the middle of the night while she tended to you describes a connection he feels with you that no one else will ever have.  A few years from when I write this, there will be times when kids give him a hard time because of his eyes.  I hope you'll return the favor, reach out, and redirect his attention to you.  You are the best friend each other will ever have.

We just finished your first three month cycle of Long Term Maintenance (5 and a half cycles to go) and began a new phase today with a Lumbar Puncture in your spine which they put you to sleep for.  We also have to start another 5 day trek of Prednisone.  Hopefully you won't remember much of what it is like to be on such harsh drugs BUT your blood counts could not be better!  Haven't seen an ANC value below 1000 in over a month.  Yesterday for your pre-procedure physical, you sat to have your port accessed and labs drawn like your usual stoic self.  Chin up and chest out like a pro.  All of the nurses at the Bass center have become fond of seeing what you are wearing (your mom knows how to dress you to impress) and yesterday they were treated to you beaming from cheek to cheek showing off your new pink bow.  This is the first thing your hair has been long enough to hold in over 10 months.  YEAH!  I cannot promise we won't go back to a thinner state on that front (though as I grow mine back now, it may be already), but to me it signifies how your have charismatically carried yourself through this from the moment those beautiful pig tails were lost.  You know the difference between triangles, circles and squares as we discussed yesterday while drawing, you just learned how to put your face under water in your swim lessons....and you know how to put cancer in its place.  You've already accomplished more than some have in an entire lifetime.  Complacency is not on the agenda, so keep going because you've been given the precious gift of another day.  It's something I relish every morning I wake up.

From here our path is a little unclear but we have learned a bit more patience over the last 361 days.  I have a hard time celebrating big milestones because we still have so much ground to cover medically and much more after and I never want to it all to be too good to be true.  But, we as parents can prepare you for as much as you are ready to learn.  That we will go to the ends of the earth to do.  When you are able and willing, my promise is that you'll be able to walk outside to the most perfectly manicured pitch you have ever seen.  Every detail will be covered, every white stripe perfectly contrasted with the lush green grass aimed to serve as your playground.  The boots to be worn are already magic on your feet (did you see the size of that ladder you scaled at camp???) and ready to carry you further.  What you do once you take the first step in bounds, however, will be entirely up to you....and all of the nurses, doctors, friends, family, and army of supporters who fought for you will be cheering so loud, it'll be the most moving music you've ever heard.  That's my goal...with HOPE very much alive in the meantime.

I'll leave you today with lyrics to a song your mom and I used to commemorate our wedding and the promise of a bright future:

"ONE"

by U2

One love, One life 

When it's one need , In the night 

One love, We get to share it 

Leaves you baby if you , Don't care for it 

Did I disappoint you? 

Or leave a bad taste in your mouth? 

You act like you never had love 

And you want me to go without? 

Well it's... 

Too late Tonight 

To drag the past out into the light 

We're one, but we're not the same 

We get to 

Carry each other, Carry each other 

One

Have you come here for forgiveness? 

Have you come to raise the dead? 

Have you come here to play Jesus 

To the lepers in your head?

Did I ask too much? More than a lot 

You gave me nothing, Now it's all I got 

We're one, But we're not the same 

Will we, Hurt each other 

Then we do it again 

You say 

Love is a temple, Love a higher law 

Love is a temple, Love the higher law 

You ask me to enter, But then you make me crawl 

And I can't be holding on, To what you got 

When all you got is hurt 

One love, One blood, One life 

You got to do what you should 

One life, With each other 

Sisters, Brothers 

One life, But we're not the same 

We get to

Carry each other, Carry each other 

One... life 

One

Sleep tight my beautiful girl, Mommy & Daddy loves you.