Truth and Needles - Day 763

Most of the time we are on the up and up.  That could be a perception we lead ourselves to believe is true because we so badly wish it a reality when we are granted another hopeful day.  I'd like to think about it as guarded optimism.  This is in fact the case for a majority of the current time that goes by.  But the human factor creeps in every so often to remind me of our mortality and ping me in the side like a miniature but deliberate needle.  The poke is inevitable and inescapable.  I cannot give you glowing words of hope every time I write because it would not be an accurate picture of every moment of Ellie's journey.  The darker moments where many cannot comprehend as fast as we can what potentially devastating domino effects lie ahead show up unannounced and a midst a recurring fatigue that 2+ years into the fight never completely goes away.  My coping mechanism is to vent in a productive manner, ideally.  I run.  I bike.  I swim.  I have a Rocky training montage screaming through my ipod...and I tear the track apart.  Is that too cliche?  Frankly, I don't care.  It works.  Tonight, however, it is time to put words on paper in hopes that this blog can be my temporary punching bag.  I know a lot more people read this blog that I would have ever expected a couple years back, but I have always maintained it has been a tool far more beneficial for Polly and I than anything else.  So, time to vent.  Mom, you taught me well and I promise to keep my language clean as much as I can.

We have three months left of chemotherapy.  Three months from a two and a half year treatment protocol.  By itself, that's amazing.  We are so...so close.  One viewpoint would suggest the shackles are about to come off allowing for more freedom than we ever knew we really had.  We get glimpses of it as Ellie has started to grasp so many normal things a 4 year old does with vigor!  She now claims the superior swimming ability over her brother in the pool, shoots baskets with accuracy, sings songs from memory from the radio when we drive around town, and initiates games with a certain sly understanding of how to position herself to win.  I know you want to believe this can all be a distant memory at some point.  I want that more than you could ever possibly imagine.  Ever.  But we are also watching her body start to suffer some longer term effects of the chemo drugs with pain in her legs, an enlarged stomach that comes and goes with the prednisone, and mood swings that often are unexplainable.

Steroid pulses come in 5 day segments and occur once a month during Long Term Maintenance (LTM).  She takes two doses per day typically from a Thursday thru a Monday.  We have seen steroid weekends where she skates through as if she wasn't sick at all...and then we see weekends like this one where the steroids have completely taken over her every move.  She becomes lifeless with her movements, clings only to Polly, is inconsolable when irritated (which is often), and does not want to do anything except sit and stare.  This is our world on some days.  Our near catatonic daughter drugged out from everything beyond her control.   What the hell? (Sorry, mom) WHAT THE HELL?!  Yer gonna tell me that we signed up to be parents like everyone else with open arms to the endless possibilities of what children can bring and while experiencing it all, we would unexpectedly have to "deal" with this cloak that smothers and confines our spirit (temporarily yes but unrelenting nonetheless) with no end in sight.  One misstep off treatment and she will have to repeat these two and half years, maybe more.  It sucks.  It is unfair.  And if I could find a tangible object that represented leukemia to its core, I would commit the rest of my days to making it an un-object.

The human factor.  It is the part of me, perhaps all of us, that makes it so very hard to surrender some days as I mentioned in my last post.  Many do not understand.  I know that and do not fault the inability to grasp an environment they are not in day in and day out.  How could they possibly know?  I am keenly aware of what it is like to be unaware because from the first day of my adult life thru June 25, 2011 I too did not understand....and that needle will poke me again when I learn of the next diagnosis within our little cancer world as it always does.  There is Hope (of course) and Resolve and Perseverance.  I know this.  I know, I know, I KNOW.  But I want you to understand what it is like to see my little girl's eyes today as she painfully asks to lay down and then fights for a comfortable position to lie in because her stimach hurts so much.  You see her eyes fixed beyond my own and into an unknown arena beyond.  She knows not of why this is happening.  She knows nothing of what may lie ahead.  Still though, she represents the very best of this world not yet jaded from her current predicament.  Leukemia can Piss Off.

One of the treats I had as a kid was to go to a baseball game with my Dad and/or family.  Dodger Stadium was fairly easy to get to and affordable by 1980's standards.  Ironically, this November is the 25th anniversary of one of my all time favorite sports moments when I was huddled around a radio during a youth church retreat listening to Game 1 of the World series in 1988.  We were not supposed to have any sort of outside devices with us during the weekend, but c'mon people....this was the friggin' World Series.  Kirk Gibson had injured himself earlier in the playoffs and the Oakland A's had one of the best closers in Baseball pitching the 9th inning.  Gibson limps up to bat as a pinch hitter and hits a game winning home run with now that famous trot around the bases with a waist level fist pump for the ages.  Our church group suddenly became a lot more prayerful that evening.  WOW.  You need to be able to witness the unbelievable sometimes.  It can motivate you for years to come.  Looking back, one player always sticks out to me.  Mickey Hatcher.  No matter the game situation, score, predicament, or whatever....the dude would sprint as fast as possible to and from left or right field when the Dodgers were not at bat.  When he walked after 4 balls in a game, he would sprint like a madman to first base.  He hit only one home run the entire 1988 regular season.  When Kirk Gibson went down with an injury, Hatcher took his spot in the starting lineup and hit two home runs during the World series that helped propel the Dodgers to the title.  He saw his opportunity and he took it.  And if that opportunity had never come, he still would have been sprinting to his position during practice earlier in the afternoon, I'm sure.  This is Faith in possibility.

We have to keep going.  It is painful on days like today.  I want to be looking forward to another year of preschool, not dreading what those first few blood tests off treatment will be like in November.  I want to tell you I don't scream WHY in my thoughts before I go to bed some nights...but that would be a lie.  When she goes off treatment in October, we will have reached a bench mark but not the end point.  The next 2-3 years will be perhaps the most crucial of this entire fight.  There will be no more drugs, just living, hoping, waiting, and praying.

Perhaps part of tonight's frustration comes on the heels of our awesome vacation to Disneyland last week.  We were able to head south for the first time since Ellie's diagnosis and went to meet Mickey with my parents, Poll'y's parents and my sister's family.  Timmy's eye surgery was a big success and he was healthy enough now two weeks later to get back to running, jumping, and playing.  Disney was absolutely awesome to give us a special pass that allowed Ellie (and the rest of us) to go to the front of the line for all rides she was tall enough for.  We met princesses, rode the carousel 8 times, ate some Big Thunder BBQ, allowed Timmy to suggest we go to the Rockets ride next 20 times over, and experienced the new Cars Land in all its Disney glory.  Ellie met Minnie Mouse and Timmy fulfilled a lifelong 4 year old dream....He met Light Buzz.

To Iff-nitty and Bond!

Yeah!

And both kids actually survived Splash Mountain

with Timmy swearing he will never go on it again. :)

The return to reality has been tougher than I thought it would.  With summer school, hospital visits, and various other things the summer does not feel as restful as it should be with a new school year just three weeks from now.  The fatigue of what we deal with and are reminded of nearly everyday wears on you like kryptonite...complete with a staggering stumble to your knees when you have to see Ellie experience pain like today.  To do anything other than stand here and fight like mad would be absolutely foolish.  But, to expect me to do it without a little complaining would also be slightly silly.  Better here in the blog so I can rest more peacefully.  Disneyland, as it promotes itself to be, is a bit of a fairy tale world.  It certainly was nice to forget everything else for a few days and join in the magic, however commercialized it may be.  My kids deserve to have memories like those stick with them for years to come.

So, the needle persists, but I've always thought the extra-ordinary effort of sprinting to position, especially when no ones looking, will pay dividends down the road.  It has to.  The poke doesn't pack much of a punch with consistent forward thinking.  With all of these setbacks and peaks/valleys through 2+ years (and 5-6 more to come), we need to hold onto that which is Truth.  Truth of Purpose and Truth of Love.  I am going to tell you that days like today will ultimately make us stronger despite the tears in between.  There is absolutely no denying the Truth.

I want to make a special mention again of friends of ours who are fighting the courageous Leukemia battle in Charlotte, North Carolina.  Justin Solomon, now 19, was diagnosed two weeks after Ellie.  He had a bone marrow transplant in the winter of 2012 and though cancer free now, is fighting many complications from that transplant.  He is in need of a kidney transplant now and with a lot of prayerful HOPE in the coming weeks, his incredible MOM, Jennifer, will be able to be his donor.  She knows, even more so than Polly and I, about how hard this road of constant day by day struggles is.  The two of them make up one of the strongest and inspiring teams I have ever had the privilege to be a part of (even remotely).  Maybe one day, Justin (a very good baseball player - drafted by the Rockies don't cha know!) can show Ellie how to throw a curve ball.  I can say right now, she definitely has the Wild Pitch down pat.  We are in urgent need of some pitching diversification (you laugh, but my wall fixtures are slowly and mercilessly losing the battle).  You can read about Justin's journey on facebook - search "Prayers for Justin".  We could not be prouder to be walking this road with them.

Ellie's last Steroid pill for this course is tomorrow night (Thank God).  She has two more 5 day courses to take before she goes off treatment and then with any luck, we will never have to have days like today ever again.  Please pray for that possibility.  Every single word of support, spoken or unspoken, brings us closer to a cure.

Thanks for listening to me vent.   #love4ellie

Surrender - Day 750

I've been reading Father Joe's autobiography, The Four Gifts, as of late (which I highly recommend) and spending time reflecting on lessons learned along his path which in part permeate down to our journey.  The subject matter and specific context is different but it has a familiarity of common themes that ring acutely true to our own adverse times.  With every bump, every hospital stay, each surgery, the tense phone calls with insurance representatives now too numerous to count, the restructuring of work schedules to meet medical schedules, and the financial burden that follows it all....there is stress, worry, anger, frustration, impatience, and perhaps most of all there is fatigue.  You wonder when is enough...enough?  I try to rationalize where various feelings should go when the next disaster strikes and while decisions on that front get made regularly, there is always an overwhelming feeling on if the chosen way we go about things is the healthiest in the long run.  I think we're keeping up OK, but the doubt still remains.  Have I done enough?  Have we researched enough?  Could we try something new?  Are we doing enough in the NOW to satisfy a life we have worked so hard to get back to but know can be ripped from our grasps at any moment?  Why do bad things keep happening?  Why us?  Why?  This thoughts will drive you nuts.

The damn milk was spilled a while back.  Heck, the two gallons sitting in reserve in the fridge have sprung leaks as well.  I may not have all the answers all the time, but I am quite aware that sitting here crying at the mess in front of me is an incredible waste of time.  I know this and I relearn it on a regular basis.  Doesn't mean I won't go back to some of the aforementioned questions again tomorrow when my son takes his turn under general anesthesia and we sit helplessly waiting for a positive outcome while we meddle in rare surgeries with no assurances in sight that this will produce a better outcome.....because no one can say for sure and I am not the one who has the power of the scalpel.  But I do know better.  Eyes have to come up from the puddle below, fully intent on focusing now to the horizon beyond, and they must be willing to surrender.  If we can surrender our fear, our angst, and our worry....therein lies the ultimate Faith that will guide us through.  Even though I do not believe you can ever say to a cancer patient that it is "going to be OK", fully embracing God's love and finding peace from releasing the burden of worry brings those very words to the tip of my tongue.  So, this week I am surrendering (again).  When properly done, there isn't anything we cannot handle through Faith and the specific, extremely welcome, sense of calm that comes along with it.

Where to begin with this past week.  Polly's Dad had what was supposed to be a routine procedure for his heart late last week.  This quickly evolved into a series of unexpected complications that stopped us in our tracks for most of the week as he spent about 5 days in the ICU.  There is so much time spent focused on the cancer fight that it is very easy to forget how the slightest change to the support system can really shake you.  We are elated that he has improved steadily over the past couple of days, was moved out of ICU last night, and if all goes well tonight he will be discharged tomorrow.  If there was ever a reason to be thankful on a 4th of July in recent memory, this is most definitely it.  Just in time as well for our next big event.  Timmy's big eye surgery.

I don't know if you recall but Timmy was born with a rare genetic eye condition called Blepharophimosis, or otherwise known as BPES.  The basics are this - he was born with a nonperforming muscle that is used to open his eyes causing his eyes to droop (known as "Ptosis"), his overall eye socket width is significantly smaller than an average person, and the inside lower corners of his eyes contain an extra piece of skin called a "epicanthus inversus". While there is not complete remedy for making his eyes look 100% normal, the goal is to use plastic surgery to manipulate the muscles he does have so that he can have normal eye opening function, as close to regular appearance as possible, and keep his eye sight at 100% (which it is now).  If your pupil is covered more than halfway for a significant amount of time, your eye will begin to shut down.  When he was 6 months old, we elected to have a silicone sling surgery performed from a renowned pediatric oculoplastic surgeon in the Bay Area.  This attached his eyelids to muscles in his forehead allowing him to open his eyes and fully expose his pupils.  He has learned to use these muscles extremely well.  But we were fully aware the slings were temporary because his entire head and facial tissue was growing rapidly as a young kid.  So long as his eye sight was OK (he does wear glasses for a slight astigmatism), we would want to hold off until he is 5 or 6 to do the permanent surgeries which involve epicanthus corrections and a permanent sling using fascia from his own leg.  Our most recent trip to the eye doc revealed his eye sight had begun to worsen, unfortunately, as the silicone slings are getting too relaxed. We are now in a tough spot because the surgeries have to happen a about 18 months earlier than we wanted....and of course during a time when Ellie is still on active treatment herself.  There was a concern the desired permanent result may not be achieved since his face is still on the young side and thus the worries surfaced this past two weeks all while trying to get a grip on Polly's Dad's status.

Thankfully we were put in touch with another pediatric surgeon who specializes in the epicanthus surgery up at UCSF.  At the first call it was going to be two months until we got in.  And then Polly does what she does so well on the phone.  Kick some ass.  Sorry to be blunt, but it's true and if you have seen what we have seen from 2+ years in the cancer world, you would understand that being nice sometimes is just not in the cards if you want something done on certain days.  We were seen two days later and surgery (which is only performed on Fridays with this doc) found a cancellation we could take the place of tomorrow morning.  So now it is my boy's turn to put on his brave face.  Unlike the surgery at 6 months, he knows fear now and we have been trying to prep him for it all week (ice cream for dinner tomorrow night if anyone wants to come over).  You know its funny, my biggest worry coming out of the twins birth, long before cancer entered the picture, was that Timmy was (and still may) get some unwanted comments thrown his way about his eyes from other children.  We figure this may show up around 2nd or 3rd grade.  But the worry is so much less because Ellie is right there beside him.  (Quite honestly, no tormentor of Timmy will ever want to mess with Ellie on steroids...Polly and I don't mess with Ellie on steroids)  Her own battle has made her stronger than we ever thought possible.  Timmy draws strength from her now even though he may fully recognize its value now.  Twins will never allow themselves to be very far apart.

It does not matter how routine surgeries get between both our kids.  Having the doc come wheel them out of the prep room from us and saying goodbye is a horrible, gut wrenching feeling.  If we experienced it 100 times, the emotions would be the same.  Neither of them ever did anything to deserve these early life struggles nor the vast amounts of normal childhood they have missed because of it.  There again is the call to Surrender.  Oh no, not to give up by any means.  This is the call to know that following those 3-4 agonizing hours in the waiting room tomorrow and that step we must blindly take from one side of this to the other, there will be the start of a better life for our amazing child.  And he'll get to see the world with eyes wide open, the way it was meant to be.  We're praying for a successful day tomorrow and patiently waiting for Faith to guide us on what the next step is after that.  I'm surrendering to God so that the worry of that next step is minimized and I may freely and more powerfully concentrate on that hug I'm gonna give him when he wakes up tomorrow.

The second night at Camp Okizu during family weekend is always set aside for a dance party.  The staff does an awesome job of converting the patio in front of the main dining hall into a large dance floor complete with lights, props for decorations, huge speakers for music, and a DJ.  Having a large walking boot on my foot and only losing the crutches a couple days prior at that point precluded me from taking part in the festivities.  (BTW, no more boot now.  Walking normal again after 12 weeks since my own surgery.  Still not running or playing soccer, but all in good time....believe me I am extremely thankful for the ability to just walk).  Anyways, during this year's trip I was fortunate to bear witness to a pretty amazing moment in time.  One that captures the essence of Okizu perfectly and reaffirms all of us parents of childhood cancer patients that there is a light down this road somewhere.  We may not see it, but its there.  A couple we had met earlier in the weekend told us of their story which began with them marrying and wanting to have kids soon thereafter.  Both were new immigrants to this country, both worked full time out of necessity and both had very little spare time because of demanding work schedules.  They tried for several years to have a child and for whatever reason, they could not.  The pain and anguish in her representation of how long that part of her journey seemed was evident in how she hung onto the words that described the sheer elation she felt when they finally were told their miracle had happened seemingly months before they were about to give up for good.  Nine months later they became official parents only to find out their newborn son had down syndrome.  Seven years in the making, they clawed their way through and found a wonderful life with a very dependent young boy.  A few months before his 8th birthday, their son was diagnosed with leukemia and underwent the same protocol that Ellie is on now (only for boys).  3 years of chemotherapy came and went, he was in remission and all was well.  They were out celebrating one afternoon another month gone by to his new found freedom being off treatment.  The whole family had gathered for his birthday.  As she got to this point, her voice started to quiver (there is no shortage of kleenex at Camp Okizu).  Just after returning home from the party, they received a call from the doc that his latest off treatment blood work came back with signs of relapse.  He had to now repeat the three years of chemo all over again.  One thing after another after another.  It hits all too close to home.  But on this dance party night, two counselors scooped him out of his seat on the steps near where I was hanging out and took him down to the floor.  Flanked on either side by folks helping him get his dance groove on, a smile larger than life came across his face and stayed there for the duration of about three entire songs.  And standing about 10 feet away, capturing it on iPad video, was his mom with a smile of her own and tears of joy streaming down her face.  As one of my colleagues said a few days later when I was describing the scene to him, "If that wasn't Jesus smiling with him, I don't know what is."

You have to take these moments and fully immerse yourself in the beauty of their simplicity.  There may or may not be more of them ahead.  It has to be about Now.  Learning from each other on when to let go of fear and compounded stress is an absolute gift.  I think pain is inevitable in what we've been through and I know I am at fault for giving into the stress of our day to day on many occasions.  Ultimately these battles are going to be won by our kids and if surrendering to a trust of blind faith is what it takes to facilitate victory, then count me in.  COUNT ME IN.

Besides, now that my foot is healed, we got a lot of dancing to catch up on!  Please say a prayer for Timmy tomorrow, Polly's Dad Randy getting discharged, and always always always a few words for my sweet Ellie Belle.

Earlier today at the Redwood City 4th of July

Parade and Fireman's Pancake Breakfast

My daily reminder as I arrive to work.

Call it our own "Play like a Champion Today" sign if you will
hung near the lockeroom's entrance ~ Many thanks to Coach Walsh

Words to live by

The Joys of Summer - Day 741

Two years ago today, our lives changed in an instant.  We are so blessed to be where we are today, with two vibrant four year olds enjoying every minute of life.  We are well aware that life could change again in an instant and are truly embracing our summer.

Neither Jeff nor I have had time to post lately, which is a good thing…it means we have been doing fun things with the kids. 

The end of May brought the end of the most wonderful first year of school for Timmy and Ellie, and me as a working parent in the classroom.  While I hope Timmy and Ellie will have many more amazing teachers in their careers as students, Teacher Kathy (their main teacher from this past year) will always be at the top of the list.  She taught them and us so much and we are truly grateful for her guidance, love, and support. 

First Day of School, September 2012

Last Day of School, May 2013

Memorial Day weekend we drove up to attend family camp at Camp Okizu.  This was our second year attending family camp and just as it was last year, it was the most amazing, wonderful experience.  Timmy and Ellie’s favorite counselors Kitty and Scooby (whom they talked about since the end of last year’s camp) were there as well as many families we met the previous year.  I don’t quite know how to describe the camp experience, but the love and support you feel at camp from all of the counselors and other families you meet is truly unique.  Timmy and Ellie spent every moment they could with Kitty and Scooby…and these amazing women fully embraced them each and every time they saw them.  Some of you might remember that last year Ellie did the big zip line all by herself, well this year Timmy made sure he was the first one to get on that zip line by himself.  They both soared through the trees with huge smiles on their faces.  We are so grateful for the opportunity to attend Camp Okizu and for all the wonderful memories. 

Ellie, Timmy, and Scooby

Timmy, Ellie, and Kitty

Upon our return home from Camp we were immediately thrown into birthday preparations.  Timmy and Ellie celebrated their 4^th birthday Mary Poppins style with all their friends at my parent’s house.  Timmy had been asking for a bounce house with a slide for months, and so the bounce house and piñata were the big entertainment for their birthday party. Timmy insisted on wearing his "Bert" costume to the party, while Ellie wanted to make sure she had a chance to wear her "party dress" from Gigi.  

They truly enjoyed their cupcakes!!

Since their birthday we have had at least one and sometimes two birthday parties to attend every weekend.  To some this might seem like a lot, but for us and them it has been so much fun.  We are so lucky to be in a community at our preschool with such wonderful families. 

We have also enjoyed ollaliberry picking and jam making with Gigi as well as daily swimming lessons at Serra and much more frequent trips to the barn. 

One of Ellie’s best friends from school has long dark brown hair and she frequently wears it in braids.  Ellie has been asking me when her hair would be long enough to braid, and while it is really growing a lot, it is still pretty short.  However, this morning we managed to get two French braids on her.  While I still need to work on my braiding skills (it has been a long time since I did a French braid on a horse’s tail!) she was thrilled with the results as you can see in her smile.

As we move towards the end of Jeff’s teaching summer school, we are tentatively planning our first trip to Southern California since Ellie’s diagnosis.  We are keeping our fingers crossed that she stays well so we can travel. 

Ellie’s counts have for the most part remained stable since the last post in May.  Her GI issues seem to have cleared up and thankfully for the last month we have only been at the hospital once a week. 

As many of you know, Timmy had surgery on his eyes when he was 6 months old.  We have known that subsequent surgeries were in his future, however we had hoped he would make it another year before needing one.  After his vision check last week, it became apparent that the time is now to start those surgeries.  Thus, he will have two surgeries approximately three months apart with the first one scheduled for July 5^th.  Thankfully they will be on an outpatient basis at UCSF. 

If you could please keep Ellie, Timmy, and my father who is going in for surgery tomorrow in your thoughts and prayers we would appreciate it.  We hope you too are enjoying your time this summer! 

With love and blessings,

Polly

Carried - Day 693

"Even to your old age, I will be the same,

And even to your graying years I will bear you.

I will carry you; And I will deliver you"

~ Isaiah 46:4 ~

It is hard to ask for help sometimes.  It is even harder to make an appeal for help that may or may not come in the desired time frame we seek.  The answer requires patience and a big helping of some blind Faith.  The struggle in between represents the reoccurring test where perhaps coming to a conclusion in the present tense is not the ultimate goal.  There will just be another test next week.  Its been like that ever since I left college....where I naively thought exams would end once my classroom days were behind me.  We are pushed to some varying limit every single day in some way shape or form with periods of time where it seems to pile on.  And on and on as has been the case for us these past couple months.  I find I am forced to take a step back into my thoughts and commit to a self study that examines priorities and my interactions with others.  If I am to grasp onto Faith with clear eyes and a full heart waiting for answers far down the road, I need to have earned my way there.  The relationships we build and the people we connect and travel with in countless circles will ultimately be the branches of help we reach for in times of need.  If I have not done my part in creating each circle or committed to the intent to do so, I'm sure I should not even bother to raise my hand.  There is always the worry I have not done enough, but this is where the blind faith pays you back even if a conclusion still hasn't arrived.  Polly and I have found in these last two years that often we were being carried long before we ever had to ask.

So, I can't walk.  No, I mean I literally cannot walk....going on 6 weeks now.  Polly has been keeping up the blog for us as I have been trying to keep my surgically repaired left foot above my head to avoid this completely alarming shade of painful purple it turns at night when it isn't elevated.  Some two months ago, I made a very regrettable decision in a soccer game (as a player this time) to challenge for a loose ball with the inside of my foot exposed.  I got the ball, the other guy got my foot with his studs and I limped off with the injury.  Two weeks after thinking it was a bad bone bruise I went to get an X-ray because though I was walking mostly OK, I couldn't run at all.  X-Ray revealed a broken/cracked navicular bone in three places and surgery for a small screw insertion to pull the bone together was scheduled two days later.  Long story short, here I am now still non-weight bearing in my 6th week post surgery.  I use a loaned knee-walker to get around my classroom (Thank you, Dave) and combo of crutches plus lots of hopping to get around the house.  I crawl up stairs on my knees, am unable to carry much of anything, and have been about as useless around the house to help Polly as I can ever remember.  Polly is a Saint, to say the least, and about the toughest person I know to handle everything with the grace that she does.

The timing of my foot could not have been worse, coming right in the middle of Ellie's stomach issues.  For that, I feel guilty because of the undue stress placed onto Polly with everything that has to be done in our house on a given day/night, especially with the many night time screams, moans, and upset stomach sessions Ellie had been enduring.  But then we had that fateful 12 hour day at LPCH almost a month ago roaming between 4 departments seeking answers for what she was struggling with.  We criss-crossed the long Stanford Hospital corridor six different times and met every deadline put in front of us with 7 different doctors.  It was something out of a movie in parts.  Here was my little girl undergoing test after test at a place she thinks of as just another activity in her week (like her swim and gymnastic lessons).  She never cried once except to say she was hungry, she never complained we were there too long.  She sat face up with a multi-million dollar radioactive isotope detector covering her body inches from her nose without a peep.  This is the same girl who has worked her way back from having 95% of her blood filled with cancerous leukemic blasts two years ago followed by the most horrific medicines you could imagine having to inject into a 2 year old...yet she still found her way back to being cancer free and clear now.  That day at LPCH was a turning point for this latest mountain we have had to climb and Ellie led the way.  She carried us.  Answers were found for more questions than we started with and we found a way to survive....like we always do and always will.  I think about how much we can possibly still have thrown our way at one time or repeatedly over longer periods despite all that we still face now.  But there is this somewhat comforting feeling that exists from seeing Ellie be her stoic self at the hospital every time and knowing that if we ever got to a dire situation, faith through numerous vehicles of "help" has now on multiple occasions shown us the way through.

We want to say a very special thank you to our beloved pre-school community.  About a month and a half ago, a train of food started coming to our door every night for a few weeks when finding time to make dinner by the time work was out and to meet Ellie's chemo window was a near impossibility...not to mention my one legged kitchen work just isn't the same as that on two.  The twins' amazing teacher was nice enough to lend me her family's spare car which has an automatic transmission so I could still drive myself to work (my car is a stick and without a clutch pushing foot....you get the idea).  On hospital days, we have several folks who are willing to take Timmy to school so Polly can get to LPCH and I can make my first class at Serra.  Everything takes twice as long on one foot in the morning for me.  And most of all, there are so many dear friends who asked about Ellie on a regular basis while she was out of school for the better part of three weeks.  The Co-Op environment for a pre-school setting is very unique and now after being in it for a full school year, I'm not sure why you would want to do anything else.  It is a wonderful family to be a part of....and one that is willing to carry you without reservation when it is needed the most.

My players and I talk a lot about those moments in games when adversity seems to be rearing its ugly head singing a potentially insurmountable tune and the desire for a leader to come to the forefront and "carry" the team on his back is needed now more than ever.  But a true leader on the field who can command respect simply by his performance without words does so by making everyone else around him better.  The needed injection of new life to a team can come from an individual aiming to spread to his community or from the community aimed at an individual.  In essence, we take turns carrying each other because we will all get a lot further than trying to gut it out without help.  The "piling on" is manageable because of the company we keep and common goals we share.

Ellie took her final does of the eurythromiacin last Thursday.  This was the antibiotic med that she had to be on to stop the effects of the gastro-paresis.  She was taking it for its side effect which is increased stomach motility.  As Polly said in an earlier post, within 24 hours of taking it following that marathon day at LPCH, she was instantly better.  The worry then became how would she react after she was taken off the med.  There was an unknown in this entire equation because no literature exists to suggest how absorption of the chemo meds Methotrexate and Mercaptopurine are affected by having an antibiotic in her stomach at the same time pushing things faster into her gut.  Thus, the eurythro was stopped sooner than it might have been for a non cancer patient.  She has been off of it now for a few days and all looks great thus far.  When the stomach ailment had reached its peak, she went on a chemo hold because her blood counts had crashed.  Protocol says you slowly work your way back up the dosage chart while recovering.  She is currently at a 75% dose strength with all signs pointing to her moving back to 100% by mid week.  She has a lumbar puncture coming up soon which will also begin her second to last three month cycle of chemo.  I have to say, I know it isn't ideal for her not to be on 100% chemo for everyday possible of LTM (Long Term Maintenance - final phase of the chemo therapy treatment protocol for A.L.L Leukemia) but I love seeing her blood counts shoot up to almost non suppressed values.  Its like her body cannot wait to be whole again.  Soon enough.  We reach the end of treatment in less than 6 months now, late October this coming fall.

Ellie and Timmy have two weeks of school left, as do I and then it will be summer time (Hooray!).  On the horizon is our second annual trip to a little piece of heaven called Camp Okizu.  Ellie has mentioned more than once that she will be doing the Zip line again - BY MYSELF DADDY!  I also get the green light from the doc to take my first steps again the day before we leave to camp, so it will be a celebratory weekend in more ways than one.  Both kids are getting so good at swimming now.  Each earned a progress sticker this week for being able to swim the length of the pool while doing 8 unassisted "up-faces" in the water (holding breath, lifting head, breathing, repeat).  They jump into the deep end and now seem to be regular fish.  I too, in the last four weeks, have traded my now dormant running shoes for a swim suit and towel so I can do something active while recovering.  In fact I look forward to it everyday after school now.  There is something very relaxing about the water while still getting the heart rate up to a solid cardio level.  Really makes me miss the times in high school down in Long Beach where my buddy Lee and I would roam through the waves on several summer evenings and watch the sun go down at the same time.  I cannot bring my iphone music and headphones into the pool, so for 45 minutes, it is just the calming sounds of water rushing by alternating with the peaceful silence below the surface.  Sometimes there is no better feeling than going home from work exhausted but completely relaxed.

To adequately describe to you how the euphoria of relief feels after getting past a prolonged episode like this spring has brought us...however carrying with it the underlying knowledge that we can be plunged back into it or another dark corridor at a moment's notice is and will forever be impossible to do.  Only our fellow childhood cancer parents know what that is like.  It creates days on occasion that bring us both to our knees.  I know I am never going to be able to fully pay back everyone that has carried us through these tougher times.  Instead, the self examination of how earning those branches comes about means to me that I must push my limits with my endeavors.  I need to continue to teach and seek professional learning communities within the teaching profession that challenge everything.  Teaching is paying it back and paying it forward at the same time.  It is what I can do with both an indirect and often direct benefit to Ellie fighting the beautiful fight.

I made early enough to school several days ago to a weekly Thursday morning Mass in the Serra chapel, knee walker and all.  From my car to the Communion table I had two students unprompted open the building door and then again in the hallway going to the chapel for me, my colleague Sally made room for me next to her in the second row even though I was late, and Father Joe said a prayer just for Ellie.  All in a 10 minute span to start my Thursday.  We are taken care of.  God has a nice way of nudging us toward that full embrace of blind Faith, but it is only possible because when needed we are carried to it and carried unconditionally.  I know the answers will come in His time.  Until then we are so thankful for everyone who offers us help in getting to where we need to go.

Mary Poppins, A Practically Perfect Mother's Day Celebration - Day 688

Mary Poppins is one of Timmy and Ellie's favorite movies.  They know all of the songs and dances, have both the soundtrack and DVD and we are in midst of planning an upcoming Mary Poppins birthday party.  Several months ago we purchased 4 tickets to see Marry Poppins the musical in San Francisco.  After purchasing the tickets, I wrote to an info email address for the show asking if there were any opportunities to meet Mary and Bert following the show.  Quite honestly, I didn't even expect to get a response but thought it was worth a try, knowing how cool it would be for the kids to meet them.  Not only did I get a response, but I met two amazing people who work for Disney and gave Timmy and Ellie a truly magical experience.

About a week and half ago, a package came in the mail for Ellie and Timmy with a letter from Mary Poppins and Bert telling them how excited they were to meet us.  They also sent along our own backstage badges with the kids names on them...to almost 4 year olds, a badge you get to wear around your neck, with your own name is a HUGE deal.

The instructions had us show up at the stage door following the matinee performance as we were seeing the evening performance later.  We were to arrive at 3:15, but as Jeff will tell you, I'm early for everything and this was certainly not something we were going to miss for being late.  So we arrived early, and it was a windy day in San Francisco.  We walked over to check out a farmers market and were stopped by two different sets of tourists who really wanted to take pictures of Timmy and Ellie.  Ellie had been given a hand me down Mary Poppins costume and I had been able to make a hat for Timmy and found a great lady on Etsy who rushed to make a shirt for him.  The two of them were quite a pair walking through the farmers market.

We then waited in front of Stage Door 1178 with our badges ready.  Since we had to wait for at least 20 minutes the kids started asking what the hold up was, and Timmy declared that he thought Mary Poppins hadn't arrived yet and that the wind was a sign that she was arriving soon :)  He and Ellie then proceed to examine all the windows up above that were open to try to figure out which one she would be flying in through.

Then Brad, the assistant company manager who helped make this day possible, arrived with goodie bags for the kids and a real Mary Poppins umbrella signed by the whole cast.  Timmy (who loves umbrellas) immediately took it and started examining it to see if the parrot on it would talk like Mary Poppins' does.  He then led us onto the side of the stage as the final act was performing.  As the final curtain came down we were ushered onto the stage to meet the whole cast.  Ellie was a little nervous at first, but Timmy took the lead and gave Mary Poppins a big hug and Ellie quickly warmed up to her.

Following the meet and greet with the cast, we were escorted out and treated to a fantastic Mother's Day meal courtesy of the Mary Poppins show at a restaurant a block away from the theater.  It was a fantastic meal and a real treat for my Mom and I.

Ellie and Timmy sat on the edge of their seats for the entire 2 hour and 45 minute performance.  The highlight was watching them sing along to "Let's Go Fly A Kite" with huge smiles on their faces.  On our walk back to the parking garage, Timmy was searching the sky to see if he could see Mary Poppins flying away.  He saw a white light and exclaimed "Mommy there she goes!  I wonder how she will land with her new family?"  to which Ellie responded "Oh, I think Brad (the assistant company manager) will help her."

We have been so blessed throughout the last 23 months to be touched by people's acts of kindness and support of our little Ellie-Belle.  We are so grateful to the Mary Poppins Disney production, and in particular Matt and Brad from the production for giving Ellie and Timmy such a magical evening and the experience of meeting the "real" Mary Poppins and Bert.

Tomorrow is chemo day for Ellie, we continue to pray for good counts and that her chemo can resume to 100% of her dose.

With Love and Thanks,
Polly