Ellie's Super Star Team - Day 546

So far in this journey, we have met some amazing people who have helped take care of Ellie (and us at times).  I wanted to do a quick post to acknowledge just a few of the many people who have touched us with their kindness over the last 18 months. 

Dr. Lacayo

Dr. Lacayo is Ellie’s primary doctor and the one who is able to calm us down when we are worried or have questions about things not going right.  We are so lucky he is the doctor overseeing Ellie’s care. 

Carly

Carly is Ellie’s Nurse Practitioner.  While Dr. Lacayo oversees Ellie’s treatment and is always there for questions, Carly is the one who we see on a weekly basis.  We had two NP’s before we met Carly.  One left after 3 months to move to another state, and the other after 3 weeks to take another job.  When we first met Carly, Ellie was at the end of Consolidation and to say I was weary of having a 3^rd NP would be an understatement.  I was in full momma bear mode and was determined that Ellie have the best care possible…poor Carly.  She took it all in stride with a smile on her face (including me asking her if she had any plans to go on maternity leave in the next 2 years…what was I thinking!!!) Over the last year Carly has always been there for Ellie and myself.  On days when we are scheduled for just chemo, she almost always stops by just to check in.  I know if I email her, I will get a response that same day if she is at the hospital, which when you have pressing issues is such a comfort.  She is the most organized person I have ever known and makes sure that Ellie’s appointments are always scheduled, meds re-ordered etc… And most importantly she is great with Ellie.  Ellie took to her quite quickly and now when we go to the hospital expects to see her.  Even when Ellie is feeling bad, she will usually give Carly a smile. 

Analisa

Analisa is Ellie’s social worker.  She is currently out on maternity leave, and we miss her but look forward to her coming back.  She is one of those people that always knows the right thing to say or how to comfort you when you are so scared. 

Nurse Kam

I can’t remember when we first met Kam.  She works in the day hospital and is always so genuine.  She has knit two beautiful hats for Ellie.  I always feel completely comfortable and confident when she is taking care of Ellie that things will go smoothly. 

Nurse Jill

I think we met nurse Jill sometime last winter.  She has kids close to Timmy and Ellie’s age and seems to just be able to relate to normal kid stuff as well as the cancer stuff.  There are days when I go home and tell Jeff we had the “all star team” today and that always means at least one of the nurses caring for Ellie was Jill or Kam. 

Nurse Michelle

Michelle works in the Day Hospital and often also works in the poke and go room where Ellie gets her labs drawn.  Michelle is always a cheery face and is an avid swimmer and always talks with us about Ellie and Timmy's progress in their swimming lessons.  

Nurse Chiyeko

Thankfully we haven’t had Chieyko care for us for a while as she works only on the inpatient side.  She cared for Ellie a lot right after diagnosis.  I felt like she and I immediately bonded because she has young twins too.  She is one of those nurses that just seems to know everything.  I will never forget when Ellie was inpatient and pretty sick, and she told me she thought Ellie had C-Diff and they should test for it.  The resident on our case didn’t think so, and the doctor seemed indifferent, so we didn’t test for it and sure enough 2 days later they finally tested her and she had it.  Chiekyo also, knows Ellie loves baby dolls and would always make her fun things for her babies (baby bottles filled with cotton balls (milk), real diapers for her baby and a bunch of other creative things).

Nurse Maggie

Maggie took care of Ellie last fall for all of our inpatient chemo days.  I think all the patients who go over the PEC (the satellite campus of LPCH) love Maggie.  She was great with Ellie and again made me as a mom feel completely confident.  Timmy and Ellie still ask when we are going to Maggie’s hospital to visit her.

Nurse Stephanie

Stephanie was the first nurse Ellie seemed to really be comfortable with.  She took care of us right after diagnosis.  She was a travelling nurse, so sadly for us, she moved on to another hospital, but we still have her picture on our refrigerator and Ellie still remembers her fondly. 

Matiana

Matiana is the medical assistant who takes all the vital signs.  Ellie (and Timmy) have loved Matiana from the day they met her.  She always has a smile on her face and is so great with all the kids. 

Roger

Roger is part of our welcoming crew (along with the Phuc and Andrew mentioned below).  When you arrive at the hospital you have to check in and get your sticker with your photo on it.  Roger is always there bright and early and greets us with a smile.  After only seeing him a few weeks, he remembered our names which to me was amazing considering the 100’s of people who come through those doors.  He also always gives Ellie her own “fun sticker” and makes sure to send her home with one for Timmy too. 

Phuc and Andrew

Phuc and Andrew are two of the valet car attendants.  Since, the hospital started construction in October 2011, all oncology patients are supposed to utilize the valet services due to the poor air quality outside the hospital.  Phuc and Andrew are always there to greet us.  They know when Timmy is in the car he gets to carry the “ticket” and when it’s just Ellie she gets it.  Ellie looks forward to seeing them each time we go to the hospital…and on our most recent trip to the ER, as we were driving in the middle of the night, she asked if she was going to get to see Phuc. 

There are so many others from the many nurses at both the day hospital and 1 North, to the front desk people who get us checked in we are so lucky to be at LPCH surrounded by people who truly care about their jobs and our daughter.  

Together - Day 535

Fall final exams are about here and I am supposed to be grading but just doesn't seem to be happening tonight.  There are a lot of opportunities to reflect this time of year.  Perhaps it is the shifting weather which forces some variances to our day or maybe the end of the semester where the daily grind has turned into a furious final push....or maybe its the soccer season that has its own roller coaster of emotion, all be in within the proper perspective, where you get some insight on how progress is taking shape.  Within our cancer family world, there are stories everyday posted for us to read about kids who are very likely experiencing their final Christmas.  The joy shared through events on a particular day to just LIVE right now is so thick in these posts, you would think a full month occurred in a short 24 hour time period.  They are doing what they can, anything and everything with what they have, so long as it is together.

I appreciate the ability and privilege to listen to people's experiences and how circumstances, mostly out of their control, have brought them to a certain point.  We so often don't want to think about what we would do in those same moments and yet, it is the essence of who we are and how we project the character of who we aspire to be that comes to the forefront when faced with a dilemma we never saw coming.  There is no black friday, holiday parties, ski vacations, or even plans for new years resolutions.  There is simply family and there is now.  What it requires is patience and faith that a direction will be given in due time, so in the meantime you just get on with something that represents the bond only a parent can feel.  These amazing families that are looking for miracles when modern medicine is short on ideas magnify courage and can live with the bittersweet days where every hour should be as full as possible.  I aspire to be that strong someday.

We did get an answer from the docs as to what was causing Ellie's fevers and overall strange blood counts for the past two weeks.  They often will run a test for one of as many as eight different strands of the flu.  The test is often not thought necessary because it rarely comes back positive.  Not so in this case as we got a positive result for an influenza variation that was finally deemed the culprit of our double ER visit week after thanksgiving.  Thankfully, her fever subsided after being on and off for about a week.  Her croup cough is also gone and her blood counts returned to their nice and suppressed state.  Never thought I'd be so happy to see a white blood cell count of 1K (Normal adults are in the 7K-10K range, chemotherapy purposely keeps it hovering between 1-2K).

Since she is healthier, we got the green light to begin cycle 4 of her Long Term Maintenance (LTM).  As a quick refresher to you chemo newbies, an LTM cycle for her Leukemia protocol is a 3 month process broken into three 1-month patterns.  At the beginning of month 1 for each cycle, she is put to sleep for a quick procedure where she receives a spinal injection (Lumbar Puncture) of methotrexate to keep the bad guys out of her central nervous system where they can possibly regenerate and hide.  She also gets a shot of Vincristine and begins a 5 day course of Steroids (Prednisone).  Following that, the month gets to be much easier as she goes in once a week for a shot of methotrexate through her port and labs to check blood counts.  Month 2 is a complete repeat of Month 1.  For Month 3, the schedule is also the same, but there is no Lumbar Puncture procedure.  On top of all of this, we give her a Mercaptopurine pill every night ("6MP" for short) which has to be taken no less than 90 minutes after she finishes eating for the day.  We are expected to do about 6+ cycles before treatment ends in October of next year.

Due to her being sick last week, she missed her normal procedure day for her LP and had to be moved to Monday of this week with a much later time slot.  The hard part here is that she cannot eat anything before the procedure.  When the time of the procedure goes late into the morning, we are faced with the task of keeping her happy after she wakes at about 6:30am.  NOT EASY.  Thankfully, Polly has become a pro at this and promises with a hospital gift shop toy and jamba juice smoothie en tote after she finishes her chemo provide excellent incentives.  She misses school and she misses playing with her brother, but she absolutely rocks these longer days at the clinic.  Did you ever think a smoothie could taste so good?  :)  We are surviving steroid week right now.  She gets very moody and extremely tired, so we try to keep her happy and allow for plenty of breaks.  The steroid course for this month ends on Friday.  Its funny, we talk about what we are most looking forward to about the holidays, and tonight it was the very reassuring thought that we will get to have a Christmas day this year (unlike last) where she will be NOT be on steroids.  That's pretty cool.

I often think fondly back on an aspect of my time at Carolina while I was in grad school.  My daily routine for the initial summer and fall semester was to drive from our apartment on the outskirts of Raleigh over to Chapel Hill and park in one of the free lots east of campus to catch a bus the rest of the way up the "hill" on Franklin street.  Right about the time I had decided to quit my job and move back east, I had purchased a pair of shoes long sought after but rarely seen in stores I would frequent (ok, I don't frequent stores but that is besides the point).  They were blue Adidas Gazelles.  I loved these shoes, so comfortable and what I wore everyday at school while roaming around Chapel Hill.  So, I'd park my car at the bus stop, put on my ipod mini (I know - how archaic?!) and make a decision on some days to forgo the bus ride so to hoof it up to class.  Why not?  The shoes were comfy!  It was typically a balmy 75-80 degrees and 95% humidity, so not the most enticing conditions for a California grown individual to *want* to hike around in, but it was perhaps one of the best parts of my entire experience.  Life was changing.  It was a leap of faith to find a new career path and a time when Polly and I were figuring out how much our individual paths were meant to be traveled together from now on.  So, I found time to walk....and walk some more with music guiding a reflecting thought process which brought great clarity of purpose to what I was there to do.  I got to where I was going sweat drenched and still tired from the morning.  But see the arrival at that point was a lesson in itself.  Someone was showing me how to create a more meaningful niche able to handle whatever was ahead.  It was God's plan, I know it.  I'm not sure I live up to those expectations for this niche everyday, Lord knows I need to stop worrying, but I still have my shoes to remind me I can start walking in the right direction anytime I want to.  And I have Polly to walk right beside.  I cannot predict but I think together we are strong enough to face any dilemma that may come and, conversely, celebrate like mad the infinite accomplishments that are to come in between.

So, this Christmas season can really be thought of two fold.  We are fully engulfed in cycle 4.  We have the threat of flu bugs and potential side effects of treatment everyday.  Hell, the amount of chemo she gets is accumulating in her body and we may be facing long term physical issues to deal with down the road (which I will gladly do ten times over if you can promise her life will be saved).  But there is also right now.  RIGHT NOW.  I have time to squeeze Ellie's nose and have her squeeze mine back.  I have time to call my mom and dad.  Polly and I have time to take the kids out to dinner and then come home to watch them put their stuffed animals to bed and then SHUSH us for the next 20 minutes lest we wake the poor inanimate little buggers (have to tell you that sometimes I just scream WAKE UP and when Timmy finds this hysterical, we we choose to just deal with loyal, yet sleep deprived "Monkey" and "Cow" companions....I mean you do what you have to do).

I want my kids to know there is no place like HOPE.  And I want them to feel the power of today with faith to take more steps together.

Just Keep Going - Day 521

The more days that go by where things are well, the less I think about posting to the blog and thus you see the gaps of time getting further apart between visits here.  That may be a good thing, I guess, though the help that writing provides me in terms of re-centering focus from time to time is invaluable.  It is a good thing to put work down once in a while and just write.  As of late, we've been having fun and trying to achieve a niche with work, pre-school, and family time where the balance of all three brings needed stability.  So many things going on at school for me (my 15th varsity soccer season now underway), the kid's social calendar is growing which is such a wonderful sight to see, and Polly is working so hard with her practice as time between doctors visits and preschool commitments permit.  I can't say we've had an average fall season this year because I am not quite sure what average would be.  I don't think we do average, honestly.  There are a ton of things to be thankful for going on in our own backyard, so to speak, that life is never dull.  Certainly Ellie's continued good health and the blessings we count every time they interact with Polly's parents and my parents are brilliant reminders of HOPE manifested before our very eyes.  But a quick peek every now and again out of the front window, in the form of a conversation or update on Facebook or doctor's visit that hangs on blood results, reminds me of the battle still raging for us and so many of our heartfelt cancer world friends.  Sometimes it feels like the annoyance of a small rock in your shoe and other times it might as well be a hot poker to the eye.  Regardless, the thought provoking reminders do not go away.  Experiences, voices, desires, and day to day activities change so often with 3 year olds anyways that you just have to smile, try not to question much, and just keep going.

For the most part, Ellie has been handling her weekly chemo quite well.  Her blood tests never get drawn without a little nervousness from Polly and I but we see good news 9 times out of 10.  The danger this time of year is the cold season.  We have been very nervous about seeing how her increased activity through pre-school and various other events would match up with her still suppressed immune system.  I would say up until this past week everything has gone near perfect.  However, right after Thanksgiving she picked up a cold and runny nose.  Strange too because Timmy always is the first one to get sick.  This time is was reversed and while it was fairly short lived in him, hers grew into a nasty cough by the end of the long weekend.  Early Monday morning we were woken up around 5am by her calling for us in between frantic gasps for air.  It was the first OH SHIT moment we've had since last winter and the kind that just brings back so many of those fears you spend months finding a way to ignore or at least put into a manageable area where you can have a go at them when good n' ready.

We hadn't seen many signs of the severity of her cough that evening and so this being, if I remember correctly, the third time during the last year where we have gone to the ER unexpectedly in the middle of the night after being blind sided by something getting out of control very quickly.  You just can never be completely at peace....especially when the craving to be so is supremely prevalent during a streak of good days over many months.  Cue the hot poker.  

As Polly was spinning like a whirlwind trying to get things together to go out the door, I had Ellie in the bathroom with the shower on full blast to try to get as much steam into her as possible.  I'm thinking this is going to be a week long hospital stay at least and dammit why didn't we see this coming?????  She sat on the counter top looking at me, her chest still getting real big....and REMARKABLY she was calm.  Her eyes never left me the whole time we were in there which was strange because of how she and her brother move from activity to activity so fast that you cannot really say lengthy attention span is in their daily routine.  Her attention was focused directly on me and I am just trying not to let her see me scared.  Though her sentences were interrupted with breaths, she wanted to know if I was going to be here when she got home and if she could go out to breakfast after seeing the doctor.  So, my mind is going 1000 miles a minute trying to figure out how she is talking while breathing this terrible noise from whatever ailment within and now I am finding myself answering questions about breakfast.  What?!   This girl is amazing.  I hate that I am admitting this and probably wouldn't be doing so in any other forum other than my own words in this blog so please forgive me, but I have to be true to my thought process because the things you don't want to think about....EVER....exist. Heck, they are amplified at 5am because you are tired and stunned.  What if she goes to the hospital and doesn't come home?  I refuse to let that thought go any further because we haven't spent the last several months building strength along with the power of prayer, Faith, and immense HOPE to be our guides when adversity strikes. But, the emotion can get the best of you for a short while sometimes.  Ellie isn't old enough to know how she is doing it or why, but she gets it.

We talk in the coaching world all the time about dealing with pressure packed moments where you are tested  to your limit.  We use words like Poise and Discipline with a whole lot of attention to detail during the execution of a game plan or rather putting your best foot forward when its needed and knowing exactly what needs to be done.  And yet here was a situation where I was struggling to comprehend as quickly as my 3 year old daughter who was already seeing herself walk out of the hospital straight to the nearest Peet's Coffee shop for a muffin and milk.  It is a little ironic she is the one who was calm here, but in hindsight a sign of reassurance only she was capable of.  She gets this and.....she's GOT THIS.

Polly took her to the ER and called about a half hour later with much relieving news that things were OK.  Thankfully her lungs were clear....don't know how that was possible given the morning we had, but we'll take it.  Some possible Divine intervention at work right there.   The doctor called it a case of Croup, so we got some breathing treatment meds to use with Timmy's nebulizer (oh yes, twins share everything) and off she went to come home (following the required stop for food of course).  No hospital stay, no major complications this time as feared.  Disaster averted.  Thanks be to God.

There are battles being fought against leukemic blasts, chemotherapy side effects, flu viruses that are magnified from a weakened immune system, and the potential long term damage the toxic chemo drugs are doing to her body in general.  Even though we hadn't seen this sort of worry in many months, the few hours on Monday morning were enough of a reminder as to the magnitude of this world.  Parts of this whole thing are absolute hell.  But in the steam filled bathroom sitting on my counter top was Winston Churchill in red and pink 3T horsey jammies saying loud and clear, "If you are going through hell, keep going."  Ellie handles things with a grace all her own.

She is still fighting the cold right now and goes in for chemo tomorrow, so we are expecting her counts to have gone neutropenic (which will mean a hold on her 6MP for a week), but she is feeling a little better and we will continue to monitor with our thermometer in hand.  Now that we've gotten the shock to our system out of the way, we are ready for anything, trust me.  The ups and downs of maintenance therapy are still so much more manageable than anything we went through a year ago at this time (yes, despite the rare few hours of panic starting at 5am).  The facts are, she is nearly 16 months cancer free now and overall doing very well.  Again, Thanks be to God.

As always there is a Faith component to this that surfaces so often right after moments of distress.  We are praying and hoping so much for little Madeline's battle to keep on an upward trend only two months removed from a bone marrow transplant (BMT) and NEVER far from our thoughts are Justin Solomon and his incredible Mom, Jennifer, who are tackling complication after complication from his own BMT.  If they can do this, we can do this too.  Faith binds us together and cements a show of strength unparalleled in anything I have ever experienced prior.  Faith, in the form Ellie's determined eyes at 5am, is what we have and its ultimately all we need.  Just have to keep reminding myself of that and move on.  We're gonna beat this thing.....mark my word.

Fly - Day 482

We've used this analogy before, I think, to describe the feeling of coming off a weekend heading into the next week feels like stepping onto the Treadmill where the stop button cannot be pressed until about 3pm the next Friday.  With Ellie only going to LPCH once a week for a couple hours, the kids now in a regular pre-school routine, and our lives being about as close to normal (right now) as we can probably get, the weekly grind has a definitive Treadmill feel to it.  And so to combat the feeling of go-go-go, I find it useful to immerse myself in music after my work for the night is done, slow down a bit, and try to center on my wife and my kids.

I've been on a piano music kick recently and found a couple guys who tickle the ivories in a unique way provide a great atmosphere to put the brakes on during the week.  One song I have been particularly fond of has been "Fly" by Ludovico Einaudi (Ignore the video in this clip, just feel the music).  I parallel it with something out of a movie when someone sits in a place where the scenery in front is moving by so quickly, it is as if the fast forward button is being pushed.  Yet, in this moment they are completely still, eyes scanning one step behind the constant change in scenery, searching for a way to take it all in, and perhaps trying to make sense of what is important.  I'm not sure it is anything more than a good chance to wind down from grading papers and working on prep for the next meeting (there seem to be a lot of meetings these days).  But, it is a time that seems to bring more clarity.  I can ask the pressing questions to at least hear what thoughts may come and do so without fear of the answers that may follow.  It's a time to sort through things without decisions getting in the way.  A time I have felt the presence of God more and more.  In the process of flying along, asking questions in a clear space seemingly brings peace.

Ellie has this uncanny ability to laugh.  She laughs at things she sees and again at the suggestion of funny ideas.  She has even started to synthesize ideas of her own that, in the right context, are offered with a huge grin.  We can tell when she is being a little goofy too because she has a fake laugh of sorts she pushes out there when she is trying to add some life to whatever is going on.  It's remarkable really.  Whatever room she enters into, it lights up.  A year ago this month, we had just finally put some distance between us and our fourth in-patient hospital stay since diagnosis.  She was scary skinny leading up to Halloween and losing more hair everyday.  Back to present day, she has a radiant color to her, moves/climbs/runs almost as well as her brother, and has seen no adverse side effects other than minor steroid rages in the last four months.  We have about 365 days of treatment left to go.  One step at a time.

The harsh reality of how fast things can change is what eats at me when time does slow down.  The cold season is starting to show itself in the Bay Area and after a week of awesome blood counts 10 days ago, she fell into neutropenic ranges on the ANC front last Thursday for the first time since May.  This always has the potential to open a Pandora's box of possibilities and return us to a year ago all over again which is why it is so damn scary.  Neutropenic means a simple cold could be a hospital stay, it could be a fast acting virus, or it could be cancer coming back.  Polly does the drive to LPCH every Thursday morning for Ellie's weekly blood tests, while I am starting my teaching day at school waiting for the text of blood counts....all the while thinking we will receive what should be routine results but always with a uneasy feeling somewhere with the small chance they won't be.  Every Thursday - over and over again.  The traffic on Sand Hill Rd heading to LPCH might as well be flying by us getting on with their normal routine while we methodically walk to the front door, stand there, and just hope.  It can be easy some weeks and madness others, so finding time to clarify thoughts and regroup on a weekly (or sometimes nightly) is a must.

A couple weeks ago, Polly took the kids down to do some apple picking in Los Gatos.  Believe me, the ease in entertaining a 3 year old with simple things like this never ceases to amaze.  Especially if you use the overly excited voice to prep them for the outing.  For instance the line "Hey GUYS - Let's take out the GARBAGE!!!!" being follow up by a "OK YEAHHH!!!" never gets old as they go literally racing to find their shoes.  I've used the phrase "Eyes on the Prize" quite a bit to describe our motivation toward just keeping the forward momentum going.  So, after 100 pictures have been snapped at a fun event like the apple picking, there is always one that shows up and immediately speaks a thousand unspoken words.  This photo, to me, shows beauty, strength, potential and grace:

I owe a blog post to Timmy very soon and I promise to write one before the Holidays get here.  His knowledge of what is going on seems to be growing and the air that goes out of the room for him when Ellie isn't there is tough to see.  He cries most Thursdays now when he is left alone with our nanny as Ellie leaves with Polly and I out the door.  He seems to have the lesser security of the two when it comes to social situations from time to time but feels so much comfort when he knows she is there for him.  Their discussion last night while Polly was at work and I was cleaning up the kitchen?  Whether they should take Hwy 101 or 280 and when to get gas on the way to San Francisco while pushing their strollers.  Go figure.  I don't recall when Polly and I had this discussion in which they are mimicking  but MAN the details that were forthcoming from this conversation!  Timmy likes to lead the way in these discussions but is always asking for her approval and when she balks at a suggestion, he will often cave.  So, obviously Hwy 280 won out (smart twins) but Ellie made sure that he understood there had to be a stop at Gigi's (Grandma's) house on the way there.  Collaborative efforts, joint decisions, and plans being made.  Wow.  I sit back and marvel how far they have come because they have each other.

I think it is both helpful to me and necessary to ask the hard questions.  We've watched over facebook the past couple of months the difficult story of a 13 year old boy named Lane in Kentucky with Rhabdomyosarcoma (soft muscle cancer - very rare) unfold.  When he relapsed for the third time, his facebook site exploded with "Likes" to the order of 394,000.  He was on hospice care for over a month before passing away last Wednesday.  I was struck a great deal by the sheer Grace in which his mom was handling her thoughts as she posted daily leading up to this week.  How will we face adversity when an inevitability presents itself?  While there is no way to prepare or some guide to tell you how to do it, Lane's mom seemingly was touched by God to bring strength to her family.  Amongst the chaos, there was a "calm" present as evident with how she described sitting by Lane's side everyday.  So, while we work all week, tirelessly educate ourselves where possible for tomorrow, and seek out activities for fun during the weekly hustle we put ourselves through....could it be that the greatest connections in our life in terms of purpose and meaning occur at a stand still while sitting right beside all that is important to us in the world?  How do we best fulfill that purpose in the only tense that matters as of right now - the present?  I'm still trying to figure that out, but my focus stays firmly affixed on the "Now" as much as humanly possible watching Ellie laugh as often as possible.  I do remind myself every week that whatever comes with the blood tests will be dealt with in due time.  For now, it is simply Sunday night.

Our first step off the treadmill each week always comes back to family.  Polly drives this notion forward and keeps us all on the right path.  I know I married the right person because I will follow her anywhere.  Finding answers together is part of this whole thing and I love that our ideals of what we want match up so well despite the very difficult setbacks that have come fiercely toward us in the last 15 months.  I hope you will say a prayer for Lane's family this week.  We also pray for Logan's family, Mia's family, Sy's family, and of course for strength for our friends Justin and his mom Jenn back in North Carolina who continue to fight with everything they have.  We are so blessed to be in a more normal routine right now despite the worries that remain and will always be there for quite sometime.  I ask God for the perseverance and balance required to maintain a healthy outlook and the continuation of our great conversations while I fly along (thanks to Mr Einaudi) for a few minutes before bed on many nights.  Until this past year, I never fully appreciated nor understood how much I needed them.

Pinkalicious - Day 477

As you all know, this blog is really Jeff’s work, however Jeff has been quite busy lately so I thought  I'd share a funny story from the weekend and a quick update on how things are going. 

 

Ellie continues to march through maintenance like a super star.  Her counts have been fluctuating a bit, but so far on the 125% dose of chemo are staying within therapeutic range.  Last week she had her monthly back poke of chemo and thankfully tonight we gave her the last dose of steroids for the month.  She is much more aware now of what's going on compared to a year ago (or at least she vocalizes it more).  Each week she asks if she is going to the "sleeping room" or just regular chemo, and for her the highlight of going to the "sleeping room" is that she gets to leave in a wheelchair that Mommy pushes. Thankfully despite all of the construction at LPCH, they still let me be with her when she goes to sleep and come back in before she wakes up.  We are so lucky to have so many wonderful "friends" (nurses) we see on a weekly basis at LPCH - they truly make our lives so much easier.

 

Timmy also had to have a procedure last week.  He had his adenoids removed and a new set of ear tubes placed.  Hopefully this will set him up for an uneventful winter cold season.  Like his sister, he continues to amaze Jeff and I and was adamant about going to school the day after his adenoid removal and was full of energy.   

Pinkalicious has been one of our favorite nighttime story books since Ellie received a pair of hand me down pinkalicious jammies from a friend a little while back. Both kids know the story by heart and like to take turns “reading” it to me. For those of you who don’t know the story, Pinkalicious is a little girl who makes pink cupcakes with her mom and then eats so many she turns pink and has to eat green food to turn back to normal. So, a while back I had promised the kids we would make pinkalicious and of course bluealicious (for Timmy) cupcakes. We made the cupcakes over the weekend and I let the kids frost them by themselves, i.e. they ate pink and blue cream cheese frosting by the spoonful while I tried to spread some on each cupcake.  After dinner that night, I offered each a cupcake for dessert, but both only took one bite and asked me to save the rest for the morning.  Ellie isn’t that into sweets so this wasn’t surprising, but I don’t think I have ever seen Timmy turn down something sweet.  I didn’t think much about it and figured he had had his fill on the frosting. Sunday morning, they woke up calling me and when I walked into their room and turned the light on Timmy exclaimed “Ellie you are not pink and I’m not blue!” and they both squealed with delight…who knew 3 year olds take books so seriously!!

 

We are so thankful to be where we are 477 days later.  This time last year we were preparing to start Ellie's 4 mandatory hospital stays for high dose chemo.  Having both kids get to wake up in their room together is such a blessing.  Thank you for the continued prayers and support throughout this journey.

xoxo
Polly and Jeff

5K for 5K - Day 450

There have been several milestones you could say we have met in the last 15 months.  The day to day living concept I think demands that you look for the little victories as much as possible.  Small goals equate to a sense of progress however slow it may be at times.  I find myself being driven by this prevailing wind of forward movement.  It is infectious and addicting.  Given what Ellie has endured since this began, there is no shortage of energy to seek out that next step toward a Cure.  If she can put up the fight that she is, I can do whatever it takes within my grasp to make her dreams a reality.  There is no fatigue, there is no turning back, and there is no other choice to be made here.  Faced with an alternative that is unacceptable, we just keep pushing forward.  In the very literal sense, with eyes on the prize, we decided to start running.

Most of you know, we committed to our first cancer based fundraiser over the summer benefiting the wonderful Camp Okizu.  If you missed our post from memorial weekend this past spring, Camp Okizu is a little piece of heaven here in Northern California that exclusively supports children with cancer and their families.  It is a mostly volunteer organization that has grown from a vision of a doctor who was once full time in the Oncology department of LPCH, where Ellie is treated now at Stanford University.  The camp is completely free for all families who attend on either Memorial or Labor Day weekends and for all cancer kids plus their siblings who go to the week long summer camps in between.  With so much public attention always paid to the large organization who do the bulk of the research fundraising, Polly and I decided we wanted to give back to a smaller group like Okizu where we could see folks from our own treatment center benefit directly NOW.  This was our chance to grasp onto something within our control, put an effort forward that Timmy and Ellie can learn from and be proud of, and give back to the many fellow cancer parents we feel so connected to that walk this path with us in solidarity.

I wanted our first fundraiser to be something we could fully embrace in the preparation, so for it to involve running in a race seemed perfect.  The Feather Falls Run in Davis, CA is a new event to Okizu's impressive small town fundraiser events.  It was put on almost exclusively by UC Davis students and led by a fantastic woman who recently graduated and goes by the name of "Lefty" when she is busy volunteering as an Okizu counselor.  The race provided all the motivation I needed to put my running shoes on with a purpose.  What began as an activity for me after my work day to de-stress and clear my head from the endless list of worries (that come with more clinic visits at LPCH for Ellie than I can count anymore) turned into a focused preparation for a target goal of getting into shape and posting a respectable time in the 5K race.

I began running in early April of this past year at about 185 pounds...which includes the always quick 5-6 pounds I seem to gain when the high school soccer season is over (I think it's too many post season celebrations :) ).  My initial 2 mile times were around 16:45 which would equate, based on how I know I would slow down in the late going of a run back then, to a 25+ min mark in the 5K.  We did not start the fundraising piece until late June.  The goals we set were to raise $3000 as a family and for me to break 24 minutes in the 5K with an "eye" on 23:30.

We trekked up to Davis for an overnight trip with the kids on the weekend of Sept 9th for the race and got to enjoy some of Polly's favorite places she frequented while she was a student some years ago.  The college town feel of this particular University is very unique and appealing.  There is possibility in the air everywhere and the setting created y the students who put it together was perfect.  Fairly low budget, but tremendous quality, and to the point.  This was about the people involved and who everyone was running for.  We were joined by both family and friends on the day of for support.  My cousin, Laura, who is a current student at Davis came to run as did a colleague of mine, Sheila, with her twins who are only a month younger than Timmy and Ellie.  AND, we were ever so thankful and grateful to see the Voros family come down from Sacramento to hang with us as well.  Their youngest daughter (Lily) was diagnosed with a form of a bone tumor near her nose when she was an infant at 6 months of age.  We are forever connected because Natalie (Mom) shared a joint hospital room with us on the night of June 26th, the day Ellie was diagnosed.  She kindly offered some sympathizing words during a time when we had no idea which way was up.  Lily, by the way, is now more than a few months DONE with treatment, in complete remission, and now up and around like an active near 2 year old (Yeah!!!!).  After I did the 5K, we all did the 1 mile run as a family "walk" and then the kids participated in the Kids Run around the main Davis Quad (which was awesome because of the crowd of so many people at the finish line cheering at the top of their voices with the kids rolled on in).

Two more folks of note to mention whom we saw while at the event.  One was half of the twin counselors who Timmy and Ellie became completely attached to while we were at camp last May.  We have stayed in contact a little bit with them (they go by "Kitty" and "Scooby" as camp names) and knew that at least one of them would be there this particular weekend.  And the other person hit a little closer home for me.  I was not aware that one of my former students from Serra was such a huge part of the Okizu organization until after I had spread the word about this event to my fellow faculty members and someone had told me.  Hanna was a student in my Algebra II class back in 2007.  During the next year, as a senior, he was student body President, captain of the Wrestling team, played football/threw shot put for the Track team, led a couple different clubs on campus, and put himself in position to attend the college of his choice when Fall 2008 came along.  Little did I know his older brother is also a Leukemia survivor and he and Hanna grew up coming to Okizu.  He loved it so that he now volunteers every summer to be a counselor.  We saw him in Davis and were able to catch up.  As a teacher, there can be no better feeling on some days than seeing your students making a life for themselves that embodies every value you had hoped he would find along his educational path.  I shake my head sometimes that some of my first players I ever coached here in the Bay Area are now in their early 30's.  A story for another time....but that's just crazy.  Time flies.

The 5K race itself felt very good.  Having done a warm up race the week prior, I had gotten the rhythm down on starting with a pace that wasn't too fast.  This race did not have quite the "studs" that the warm race in Burlingame did the week prior, but there were still quite a few people.  I go through three stages when I run: the warm up phase that acclimates my body to what I am mentally demanding, the bulk of the run where the goal is just to "Do Work", and the finishing kick where my muscles know the end is in sight and you face your own personal Wall prior to doing so.

To my surprise in this particular race, I did not go out as fast as I could have, but still found myself leading for about the first 200 yards.  What a rush of adrenaline that was!  Fairly soon thereafter, two very serious runners sprinted by, but for a moment that was kinda cool.  The warm up phase can be particularly challenging because it makes you question sometimes what are you getting yourself into.  Your muscles throw a small mini revolt as they shake any rust off and your lungs begin to scream "HEY - GIVE ME A MINUTE - WILL YA!"  This is where the commitment is truly made.  You are either in this to do it or you're not.  It can be painful.  But on the other hand, it isn't really painful at all.  It doesn't compare to having a needle stuck into your spine once a month to inject medicine, nor the nausea that comes from weekly chemo treatments where poisonous medicines meant to kill cancer are very likely harming healthy cells too.  Breathing hard for 20+ minutes doesn't even skim the surface of the pain and worry shown on a two year old's face who, in the cruelest fashion imaginable, now must face the reality of growing up with a fight 1000 times greater than most of her peers.  Once your body assimilates to what is being demanded of it, you have the ability to unlock a potential you never knew was there nor the strength of 1000 men it can operate with when needed in the most dire situations.  Once you've come up to speed, you are ready to do NOW.

Not sure where I would be with my training without the music in my earphones.  It allows for an escape of sorts so the focus is not on every step I am taking but rather the scope, purpose, and follow through of the fight.  This race was about regaining a little bit of control from that which was taken from Polly and I 15 months ago.  I'll never know why we were chosen for this, but I will be able to say one day we have done and are still doing EVERYTHING we can to knock this horrible disease senseless cell by cell every chance we have.  When I turned off the Arboretum pathway at about mile 2.5, I could feel the finish line getting closer because my legs were getting a bit heavier.  The final kick has been the hardest part to train for.  A lot of coaches will say "It isn't how you start, it is how you finish", and my response is a modified approach of putting the work in throughout the process so that leaving no stone un-turned while preparing leads to your decisions, your strength, and your resolve being 100% crystal clear to you and everyone around you.  So, I kicked for the last 200 yards and posted a time I can say I left everything on the course for....or more importantly a statement in Ellie's name that we will continue to get stronger from this and everyday forward.

I promised pics to mark the occasion....and so here you go:

Pre-Race family pic

Ellie and her favorite Camp counselor "Scooby"

Ellie with her cousin Laura!

My finish line pic.

T n E, Kyle, Marco, and Isabella lining up for the Kids Run

One our favorite pics of Ellie running her Kid's race around the Davis Quad.

Goals Reached:

* We did this as a family

* We raised a grand total of $5,175 !!!! Over $2K more than our original goal and as a result were the top fundraisers for the Feather Falls Run.

* My race time finished at 23:15, 15 seconds faster than my original top goal of 23:30.  I also finished 6th over all for the day.  Not too bad and likely has me semi hooked on doing this type of race much more regularly.

* My weight last March: 185   My weight now:  162  (your own children = all the motivation you need)

This was a success for us and we are so thankful for so many of you who gave donations to us willingly in support.  We feel the the hope you have in your hearts for Ellie everyday.  I know God works in some ways I will never understand, but my faith in how people can come together, walk together, and take on monumental challenges together has never been stronger.  That is God given Faith.  Proven repeatedly everyday I see my little girl wake up smiling.

I play soccer on Monday nights in a recreational adult league here in Palo Alto.  The games get done fairly late and I drive home via Sand Hill Blvd which is the northern border of the Stanford campus and the same street we must take from our home to get to LPCH.  With all the great things that have been going on since life has come back to resemble a much better "normal" in these past few months, I don't get those prolonged periods of worry as much as I used to.  What we fear can be tackled most of the time through these vast reservoirs of strength we are trying to make bigger everyday.  It is possible now to go a few consecutive days every week without involving cancer other than to make sure Ellie gets her 6MP pill before bedtime. (She is doing great by the way, blood counts are good, she has fought off a cold as good as her brother can recently, and both have started to fully enjoy the life of a pre-schooler),  What's unique about driving down Sand Hill Blvd is that this is the street I turned onto while calling my mom to tell her the doc found a second heartbeat on the ultrasound and we were having twins!  This was the first major street I turned left onto when bringing them home for the first time in our already sleep deprived state on June 6th, 2009, just two days old.  This was the street I ventured home on alone with Timmy on the evening of June 26th when we left the ER after news of diagnosis changed everything we ever knew about parenting, and this is the street that still holds triggers to raw emotions of this entire situation....even 15 months later with my daughter in remission and me being allowed a small luxury of a Monday night soccer game.  Why Ellie?  Why us?  It is not worth answering and never will be.  The triggers serve as a reminder that this fight has a long way to go.  We have over a year left of treatment and then a very scary many months after of hoping and praying the cancer stays away.  But I will continue to make the drive down Sand Hill many many more times because I know it is possible to accomplish something small everyday to move forward and now we have done so with an initial attempt to give other families struggling a similar opportunity to get back on their feet with a place like Okizu that brings a great many people some much needed joy.  Like the runner, we all just keep going.....eyes on the prize....we run together.  Polly and I are honored to be a part.

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.