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.