Strength - Day 316

"Strength does not come from physical capacity,
it comes from an indomitable will."

~ Mohandas Gandhi ~

Through the ups and downs on this path, the people and meaningful moments they bring with them are the closest thing we have to the reassurance we crave.  Each interaction is small in the grand scheme of things but when linked together over time with continuity of purpose, it is something Polly and I can look at daily and draw strength from.  We are blessed to have such wonderful people in our lives that believe in our plight, walk the rocky road with us from afar, and understand the urgency with which every day must be lived.

The set backs are heartbreaking.  We feel those so acutely, as if it were our own, when a fellow family fighting alongside us suffers.  It is, however, a march I feel we are on with thousands that possess the kind of resolve which inspires, provokes, and challenges who I am right to the core.  I cannot stand the fact....no, I HATE it....that some members on this march will not be around to see their ultimate triumph.  But if you think about it, while the battle rages on and we do what we need to do, the number of days that see tearful setbacks are far outnumbered by those days we are picking ourselves up, dusting ourselves off, and getting right back to living...now more determined than ever.  We will tirelessly put up that pillar of strength for Ellie through every poke, injection, painful cry, and worried look.  Many people have said to me "I don't know how you do it."  And so I often reflect afterwards - It is not difficult to know what to do once you realize....there simply is no other choice.

Ellie's godfather, "Nino Vince", honored her unwavering spirit and determined fight in a tremendous way a little over a week ago by raising thousands of dollars for his walk in the ACS "Relay for Life" held in Kingsburg (CA).  Having lost his Mom just a couple of years ago to cancer, he has been able to give insight to a complex world of emotion surrounding loved ones who are watching a family member take this wretched disease head on.  Words on this blog cannot express the enormous gift I feel I have with his friendship.  Ellie was a recipient of one of his Mom's angel pins....another small but mighty token that professes strength louder than words can be screamed.  I wanted to share with you three amazing photos he gave to us as mementos signifying the occasion.  Every honored cancer warrior is put on the side of a bag with a candle in it.  Once the bags are gathered all together....well, I'll just let you see for yourself:

Vince, my friend, we are doing our best to make your mom proud.  A Strengthened spirit = A Hopeful spirit.  Thank you for that this past week.

Ellie has completed her first month of Long Term Maintenance and is two weeks into month two.  In those approximate 6 weeks, we have had 4 weeks of full chemo and 2 weeks of holds on her 6MP and Methotrexate pills due to low blood counts.  It is not ideal, but we are trying to find that happy medium, so to speak, between drug levels and blood levels.  We resumed her pills this past Friday following a week off at a 50% dose per the doctor's orders.  As I have stated before, the LTM therapy is meant to be a slow but sure weening of her body off the heavy chemo from front line treatment while making sure the fortified cancer free positions in her bone marrow are holding up against any return of the disease.  Her white blood cell count hovers at a calming low mark of around 1-2K right now, which is very good.  Her red blood cell production has been growing steadily towards normal ranges and thus she has not needed any transfusions for quite sometime now.

Every month as part of LTM, we endure a 5 day course of steroids.  Month two's course took place last week and I have to say it was the mildest episode yet.  She does turn quite quickly to a tantrum during these days but I think Polly has become so good at deflecting her attention so fast that Ellie is able to weather the storm fast enough for our liking.  And of course sometimes, it is just better to jump in and start throwing things around with her sharing equal frustration with the unwanted Roid Rage. (You should see her throw a tennis ball now!  Whoooooo LOOKOUT if you are the person standing 30 degrees to the right of the person she is looking directly at and trying to throw the ball to)  Beyond steroids, she is doing pretty well right now.  We still have a long way to go.

These past two weeks have seen our continued return to the pool for swimming lessons and a triumphant return to our first public park in nearly a year.  The twins seemingly live for swimming right now.  Both are lunging a solid 1.5 meters toward the wall and able to go under water for a couple seconds.  Timmy is quickly testing the rules of engagement for said swim lesson by insisting that sitting on the wall to shove off from to retrieve a toy is not NEARLY as enthralling as standing on the pool deck and leaping into the water.  "Never mind I can't swim completely, Dad, I'm jumping in like a lead balloon and you better catch me....and then I'd like to do it 10 more times" I'm not sure that ever gets old.  And neither does Ellie proclaiming it is HER TURN to jump off the side. The kids have officially graduated to the next class starting this Thursday, a semi-private lesson with their own teacher.  I love watching them take on things together.  We adults are not the only ones who know what Strength-in-numbers can do.

I'm going on two and a half months now as a proud member of the Bald community.  Definite lessons have been learned about shaving in patterns and to change razors before you think you need to change razors (ouch).  There is a very unique feeling I get when I walk outside and immediately feel every passing breeze, no matter how slight, over the top of my head.  (And believe me when its cold, I feel EVERY ounce of wind)  I equate it to a feeling of never being alone in any part of my day.  There hasn't been much in these last few months outside of the cancer battle that has even come close to being overwhelming.  Perspective starts that....drawing strength from Ellie and the support we receive continues to fuel it.

Today while walking to my car to go home, I came across a retired priest that lives in the rectory on campus and was out for a slow but steady stroll on his walker.  He and I have crossed paths a handful of times in that same exact spot by the athletic field over the last couple of years.  I don't know much about him.  Our conversations are very much in the present with typical great admiration for the weather that has produced a perfect day for a walk.  We stop for only a couple minutes and exchange a few words.  His smile is as warm as can be and without anything further needing to be said before we go past one another, I always feel as if I've just spoken to someone who knows incredible strength.  I never know when exactly I'll see him, but it makes the ride home that much more enjoyable on the days that I do.

When Ellie is feeling strong, there is much to said about how HOPE blankets our whole living space.  We've used it to return in longer stretches now to a normal routine where we are fervently aware of how the path we take may turn at any moment but still keep our eyes fully focused on where we want to go.  Never in a million years could you have convinced me a few years ago that I would have a daughter of my own who would teach me so much.  I think she knows where she is going.

My sweet, Ellie-Belle.  The strongest person I know.

Eat Pray Love - Day 297

It's been a while since an update and I think I am due.  It's funny, there are nights I want to sit down and write but don't have the clear enough head to do it.  Or other nights where the day's business still overwhelms my thoughts.  Looking at both those situations, I think a perfect reality would be a nightly world of thought at peace with my day's work.  Boy how we get so caught up in the details of our day.  Then there are some nights where I swear I could sit down and write volumes if sleep did not rule my hours beyond 10pm.  Not quite sure if it would all be coherent thoughts strung together with a harmony of understanding and smooth transitions between ideas, but reflective practices on this journey are often the only outlet for stress.  So, I don't know where to begin tonight because there is a lot.  Ellie is doing good, so no worries there.  But the mental fatigue of everything seems to wear at various times and its got a small grip right now.  With all due respect and proper credit to Ms. Gilbert, I've been thinking heavily of how her beautiful trinity of ideas metaphorically applies to where we are at.  To me it is the search to be centered, a place where our emotions can speak a language we understand so that a healthy approach can be taken to keep us moving forward even if by just an inch on a given day.  Eat - Pray - Love.

The idea that I can evaluate the steps I take, assess a direction, formulate a plan, and 100% affirm I will ultimately find the ending we hope for in adverse times is not guaranteed with cancer.  How can it be that something sought after is not achieved when everything your focus your energy on is in the right place?  (Case in point - the "roll" I get on sometimes during a wee halftime speech where motivation eclipses the rim of the lockeroom, spills forward to the second half, and then storms the field for the second half still yielding nothing in the way of goals.)  This is why I like movies so much.  Predictable many times over like the way we drew it up on the chalkboard, rarely reality, yet reassuringly thought provoking for what's possible.  Instead of a Hickory High State title in Hoosiers, it's the idea that Jimmy Chitwood ("J.C." if you remember from a post a long while back) misses that final shot and we (the audience) are now glaring across the floor stunned as Central High celebrate. This is the unexpected sucker punch no one saw coming.  Especially me, when things do not work out the way we drew it up at halftime no matter HOW HARD we work, no matter HOW HARD we want it.  So what the hell do we do then?

Polly and I met with Father Joe very briefly last summer about 3 weeks into this thing.  A few tears and a few words shared but nothing earth shattering was figured out.  Looking back it wasn't really about finding clarity on that day.  It was too early for that.  But he did speak to us about a centering prayer though he did not explain much about.  This was something for us to figure out.  And rightly so.  There was no guide on where to go from that point, there was no official notion that once found the center would provide a healthy child, and there was not a hint of what direction to start off in.  So, the search for the "center" came to life in many forms, folks, and forethought thereafter....and it will continue to be roughly tuned on some days and finely tuned on others in an attempt to find a perfect pitch likely not possible even through the day I cannot humanly hear it anymore.  While doing so, in the right frame of mind (one I need to remember more often), it makes TODAY an opportunity for good things to happen.  I feel like I am moving in the right direction toward figuring this centering process out, but on some days (like today) it's just a tough go.

Eat - and Eat we have.  It is hard to describe but Food has just tasted better in the last 6 months.  The company and atmosphere make it enticing and fun and when you think about it, we all get together around food a whole lot.  Ellie's blood counts have forced us to stay in much of the time and so exploring more culinary creations has become a lot of fun.  Savory sauces, quality meats, finding gems at Farmers markets, and my favorite search for the perfect sandwich lead the way.  I now know the layouts by memory of 5 different grocery stores around here, each with a slightly different purpose for what I'm looking for on a given week.  The numerous people who have brought us food over the months and continue to think of us has been so deeply moving.  One of our guardian angels, Theresa, still reaches out every so often with an enormous basket of goodies and I feel it is food for the soul.   We are so ever thankful.

I have my in-laws to thank for teaching me the ways about truffle oil, french wine, and the enormous importance of Sunday night dinner.  The Food Network is used to look toward for inspiration and assurance that yes, there can really never be too much garlic involved.  Ah, and my hero to draw experience and motivation from when figuring out a menu?  Easy.  The best cook I will ever know - my mom. Keep it healthy and simple and the flavor will take care of itself.  I am also married to perhaps one of the greatest producer of creative baked goods I will ever know where cupcake is currently being redefined ahead of T&E's 3rd birthday bash in June.  When we do get to go out on that rare birthday occasion or date night approved by Ellie's good moods, we always choose a new (to us) San Francisco restaurant because let's face it, there is just too much good food out there to eat all at one place.  There are also methods of eating that bring great joy like Timmy's unparalleled technique to eat asparagus from the bottom up and leaving these shreds of green skin behind...almost like the uncasing of a sausage I guess.  Its bizarre and gross but its hysterical.  We also have the moment in the morning where I have finished off my Cheerios and as is custom Ellie runs to the fridge to pull out a single serving of yogurt for "YOOOOGEEEE Time".  A few months ago I still got about 7/8ths of the serving into my own belly.  Now that she is tall enough to retrieve her own spoon from the utensil drawer and invite Timmy to do the same (they conspire like that often, I'm afraid), I am lucky to get half.  But she is so darn happy with herself in the process.  Good food being savored among friends and family where taste buds can find new depths of joy allow for truth to come out proving what's important - the people right in front of you at that very moment.  You want to find some quality time in your day with the people you love, its about a solid recipe, perhaps a bottle of wine, and leaving enough day set aside for the event to unfold like you are having a 10 course meal of epic proportions.  I keep up my workout regimen so the good food can keep coming, but more importantly a savory bite in the right place with the right people can be a recharging and priceless experience.  "Yogeee" time will never get old.

Pray - The power of prayer was a hard sell on me.  I'm not sure I completely understood it until I was an adult.  Everything before it was good practice but the concept of what it meant took time.  Enter moments in life where control is no where to be found over situations and naturally I want someone or something to turn to.  This is where it is nice to never be alone.  When my dear friend and coaching colleague Wes, at age 34, passed suddenly 8 short years ago I had my first moments where there was no where else to turn but to God. There are many situations, cancer being one of them, where it is not possible to fully believe someone if they tell you "it is going to be all right".  No.  In fact, I am convinced anyone who feels they can offer you that line has never been through this terribly long and absolutely draining path.  We pray for it to be all right but mostly, I want to make sure my thoughts are vocalized to someone who is always listening.  I know I know...the answers will come but waiting and waiting provides for some unfair times, especially when we talk about a 2 year little girl.  You beat yourself up, find a numbing technique through work or night time events, but really the best medicine I have found is to embrace a relationship with prayer while standing with others in this same childhood cancer boat where perhaps one more voice added to many before me will bring clarity and truth.

Coach Valvano, while dying from incurable bone cancer, talked about laughing, thinking, and moving yourself to tears on a daily basis.  Man, was he right on!  Through prayer, my thoughts get a little bit more organized and find the right outlet for tired complaints or relieving tears.  They sometimes turn into a doable checklist for the day or a list of priorities where the small stuff is left off the bottom of that very list on purpose.  It allows me to ask, no plea really, for Polly to continually have the strength she needs if there is nothing else that can be fulfilled for us at that point.  When we plan birthdays, trips out of the house, dinners, even a simple walk with the stroller there things that have to be taken care of so that Ellie stays germ free and her skin is taken care of outside.  It is a seemingly exhaustive and unfair mandated set of tasks the situation dictates we do.  We go from blood data point to blood data point feeling like each time there is a bit of roulette being played we want no part of.  I think praying alone can keep our fatigue in a place where we are never completely overwhelmed despite the elements around us...but, to be fair, it is very tough sometimes.  So, in that aspect....my search for the center has made progress and I am very grateful for some proactive step I can control.  After all, there is no alternative here other than to just keep going.

Maintenance has been a bit of a mixed bag thus far.  Her blood counts a week ago were low again and in the neutropenic levels.  They told us to expect it to be this way for a couple weeks, but it is still hard to hear that we have to hold the chemo until they come up.  Our clock moves forward nonetheless with the missed chemo not being made up, so if she recovers quickly it won't be as big of a deal.  But, if she doesn't she is open to getting sick very quickly with cold bugs which could delay her even longer.  We are so READY for more routine labs.  Tomorrow she goes in for another blood check.  If she is back above the ANC limit, she'll go back on 100% chemo.  If not, we will wait another week and then go on a lowered dose.  Chemotherapy in the maintenance phase cannot be given when the immune system is so weak, so it is a balancing act that has to be figured out with the meds.  Ellie's spirits have been pretty good.  It's not much different than I described it before where we celebrate like crazy our fun days and laughter that abounds with her, but we both go to bed each night with just that ever so slightly nagging feeling that tomorrow we could wake up to something dramatically different.  There is no way for me to completely describe what that feeling is like.  We need some prayers for some good blood work tomorrow.  It will provide a much needed lift, I think.

Yesterday, one of our fellow cancer warriors, Mia, lost her battle with leukemia after a three year fight.  She was 5 years old and has a twin brother named Noah.  There are no words to describe what this family has gone through (nor should ever have had to in the first place) and I hope you can join me in praying for healing for them.  They sum up courage and bravery in every definition of the word and deserve all the support we can send.  It is absolutely heartbreaking to hear about.  I will never understand why these things happen to us.  We do not take for granted ONE SECOND that Ellie is doing well right now and just pray (PLEASE!) that she stays moving in the right direction.

Love - My wife embodies everything that Love is.  She keeps me humble, she inspires me, and she makes this road easier to deal with if there is even a possibility to that.  Both Timmy and Ellie both just learned to say "I Love You".  Have to admit, Polly gets it a lot more than I do.  But I can deal with that :)  They both demand a hug and kiss before I leave for school every morning and are ready to present a hug to just about anyone they recognize that walks through our front door.  Ellie puts a smile on her own face that i rarely think of as cute....more like "pure".  I did not know the dimensional depths Love could provide until I met my kids. It re-prioritizes your world.  As I've seen Ellie now have more friends inside the LPCH walls than she knows outside of it, there is a remarkable love that she gives off which is infectious to everyone around her.  I use that as inspiration to try to handle things better while teaching and find energy in a tired step when needed.  Understanding that no matter what happens, that love will always be there is a very difficult thing to wrap my head around though I want to more than anything.  I will not accept anything less than a healthy daughter is and will be the prevailing cry so long as Hope is alive and well.  I love that we have made it this far.  I love that she'll wake up tomorrow morning and start asking for my phone to look at pictures of her and Timmy laughing to herself while I am still trying to sleep and the wee hour of 5:15am.  Even more so, I love that even if the day is filled with temper tantrums, demands for food, and bitter negotiations over going outside when its dinner time....we get to have another day to do all those things.

I'm looking down my bench and love when I can hear Jimmy Chitwood say with such clarity that its like bells going off with a Testimonial and RESOUNDING Rhythm.  "I'll make it" he says.  If we're going to find our center in all of this (and I think an eat-pray-love diet works wonders toward understanding how to go about it), there will come an inevitable time where we will have to trust in Faith and let him just shoot the ball like he says.  He got us here, he'll take us home.

Please pray for Mia's parents tonight.  Thank you, everyone.

Serenity Prayer

God grant me the the serenity

to accept the things I cannot change;

the courage to change the things I can;

and the wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking as He did, this sinful world

as it is, not as I would have it;

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life

and supremely happy with Him

Forever in the next.

Amen.

Passion - Day 284

I had the pleasure of listening to two very poignant messages earlier this week ahead of Easter Sunday this coming weekend.  Many things I hear on a regular basis take on an initial shape in that moment, yet I'm not sure you can ever close the door for exploring the thoughts provoked from the message so to get a deeper understanding.  There is usually a need (at least for me) to do some reflecting on what was said after the fact and on occasion I may be seeking something that just isn't there.  Not so this time.  On Monday we had a visit to Serra by our Congress Rep, Jackie Speier.  She spoke very candidly to our audience of about 500 Jr and Sr students.  I am not into politics at all, never really have been, and have to admit I knew her in name only.  I don't really know what she stands for in Washington (though maybe I should) but she gained my respect instantly for sharing her incredible story.  From her presence during the Jonestown massacre to losing a child to near financial ruin to later losing her husband in a car accident.....ho-ly smokes.  I had no idea.  What was remarkable on this day is that she wasn't going to sing her own praises or push an agenda, she simply wanted to deliver a message that Life ahead of many of these young men can be looked at with a certain path in mind....but don't expect it to go as you planned every step of the way.  How far ahead do we need to plan when there is so much going on before our eyes right now?  Even long before I heard her speak this past week, I do think about a lot of the things I "think" I want down the road...and find myself questioning some of its relevance all the time now.  But its amazing (and kinda cool) when you hear someone speak about their own story at a particular time in your own world that parallels that very thought completely.  The one conclusion I always pray for from this fairly vague and sometimes tiring thought process, if there is in fact to be a finality to it, is simply that I am able to muster all the strength needed (and then some!) for what's in front of me every single day and feel at complete peace that "what's next" will just take care of itself.  Please - JUST take care of itself.

We officially started Ellie's Long Term Maintenance (LTM) phase of treatment a week ago today.  Her ANC count jumped nearly 600 points between lab visits and she qualified the day prior with flying colors.  Now, we have been told Maintenance offers a better dose of "normal".  This is a relative term and believe me I have to catch myself from thinking too big on this front.  On day 1 of LTM, she underwent an LP procedure for chemo in her spine and got an IV push of Vincristine.  We began her nightly doses of 6MP as well which is old hat for us now after doing it all of Consolidation and DI.  The hard part about 6MP is that we have to really keep her on a strict time schedule for dinner because the 6MP cannot be taken on a full stomach nor with any dairy or citrus in her system so that the drug has 100% effectiveness in being absorbed by her body (Milk gets in the way of that).  She also cannot go to sleep until the drug has been in her system for 30 minutes because I am guessing her energy production required to absorb the drug is obviously higher when she is awake.  So, with the time parameters, it means she has to eat by around 5pm, take her meds about 7 and then go to bed by 7:30pm.  It's a little easier than it sounds, but puts a bit of a damper on evening activities if others are eating around her after 5:30.

In addition to the Day 1 drugs she got, we also started a fairly miserable 5 day course of steroids.  Once a month for the next year and a half she'll do five days of twice a day Prednisone.  I was hoping to do my best impression of an Ostrich and pretend this is a far different drug than the DEX from Induction and DI.  Uhhh - no.  It's not.  In fact at least the DEX gave us a courtesy day to ease her into her pain.  No, the Prednisone pretty much possessed her within hours.  We had our usually learning curve of figuring out what would best mask the horrific taste of the drug and finally by day 3 found our groove with just a whole lot of cherry syrup in a syringe (a magical thing this cherry syrup - seriously....we might be able to fuel our cars with it one day).  The bright spot is that the effects left her as fast as they came on once the final dose was given and by Wednesday afternoon this week, she was back to smiling and running.  It was a far cry from her doubled over limp self from Monday and Tuesday night that just pulls at your patience for this process.  So, our supposed more "normal" life will not be for all 30 days of every month it seems, but don't get me wrong we are in better times by far than we were say 6-7 months ago.  Again, its all relative.

On another note, we have seemingly conquered something without hardly any parental involvement.  I write tonight still in awe of how this all panned out and am pinching myself to make sure I am not dreaming.  For once, this was EASY.  Both twins decided a little less than two weeks ago (just after my last post) upong waking one morning well before the planned "D-Day"....that they were done with diapers.  There really was no "training" ever needed in potty training.  No, I speak the truth!  Its absolutely remarkable.  They get up, do their thing, and come back to play.  Here I had a power point, graphs/charts, and several homework assignments ready to present to them over what was sure to be a 3 week dissertation and they would have none of it.  They have conquered small potties, big potties, public potties, and car potties.  They ask for nothing more than a a single M&M in return.  WOW.  And so, I have not changed a diaper apart from the one that goes on at bed time for over a week and a half and it wasn't on the calendar to be this way.   Again - WOW.  They push each other to do similar things all the time....which I think is key here.  What a relief and liberating thing it has become for Polly and I.  I suppose for El this is nothing compared to ingesting and purging toxic chemicals every week....but I still stand here wondering what in the heck just happened?!  Done with Diapers.  I don't think I'll ever get tired of saying that.

Speaking of spring break, mine of about 12 days started yesterday.  We packed up the car and headed over to Half Moon bay to visit Polly's horse, Sarah, who just gave birth to a new foal which T&E decided to name "April".  I know there are some who read this blog that don't know Polly very well, but for many years she has been an incredibly accomplished rider in the top Amateur-Owner Hunter classes of the NorCal Equestrian circuit (ok, so I brag...)  Her Filly, Sarah, does some pretty remarkable things and provided numerous opportunities for Polly to do what she loves to do.  As hard as it has been for Polly to see Sarah retire from showing at that level a little earlier than expected, we were blessed and fortunate to have successfully bred her.  And so, last week "April" was born.....quite possibly a horse years from now you may see Ellie leaping fences over like her mom did with April's mom for so many years.  HOPE has a way of showing itself in so many unexpected ways.  It was a pretty momentous meeting yesterday, so had to share a favorite picture or two of ours to mark the occasion:

And one more because this is my favorite picture of Polly and Sarah a few years back making it all look too easy...

Its going to take some time to get used to this monthly routine of LTM as have all of the other phases, I know that.  Her counts have remained high which is great and explains her seemingly endless amounts of energy.  But next week we'll find out if we'll need to adjust the dosing downward a bit if they fall below the neutropenic line.  The goal in the protocol at this point is to NOT adjust the dose downward from 100% of all chemo.  It is part of what the doc says to expect, but impossible to predict because every kid is different.  The post steroid days will bring me some uneasiness because it often artificially inflates her white blood cell count and bloats her belly out a bit.....both relatively nothing to worry about but also both triggers subconsciously to me of signs from her diagnosis.  Can't even begin to explain how much I hate that trigger when it happens.  On a lighter note, we are seeing sprouts of new hair starting to pop up on Ellie's head and that in of itself is worth a Dance of Joy - Click HERE  :)

The second message heard this past week came from another one of Father Joe's great Homilies during our school mass on Tuesday celebrating Holy Week.  This is such a great week for empowerment of faith that always sneaks up on us in the academic setting because we're all busily moving from class to class dealing with issues left and right all with one eye closely on that anticipated spring break start date that it is great to have this Tuesday mass for a perspective check.  His words centered around the story of Judas and that within Judas' betrayal of Jesus was also quite possibly a betrayal of himself.  I'm not a bible scholar but after thinking about it for a few days (there again is the need to invite questions to the table for a better understanding of what this world is about), I know you can take this betrayal of thy self in a number of different directions.  It certainly isn't my place to say one path is correct and the other is not.....that's not the point.  But, what I took away from his words is that Judas simply lost sight of any remnants of Faith.  It goes unseen by almost everyone around you but its the ability to pick yourself up by the boot straps again and again and again that keeps Faith running through you like a full bodied river we'd all like to sit and just drift on without much worry for "what's next".  Seeking that level of Faith is a passion which is impossible to ignore.  I turn 36 tomorrow and know whole heartedly that I still have an incredible amount to learn before I can drift care free.  But being able to find opportunity each day, be it in chasing them around the kitchen in T&E's version of Hide and Seek (where hiding is a relative term for just ducking in place) or sprinting to their room during nap time when Timmy is about to scale the crib wall and flying-elbow-drop himself into Ellie's crib to her sheer delight RATHER than go to sleep, is the chance to share tiny bits of passion at a time. In doing so, I find too much good stuff going on every day to ever lose Faith completely....especially when our family path turns unexpectedly for better or for worse.  Polly said it best tonight when we were talking about something completely different - When we get there, I know it will take care of itself.

Hope you have a Wonderful Easter Sunday.

Progress - Day 271

An excerpt from Ellie and I's culinary conversation earlier this week:

Ellie:    What doing, Daddy?

Me:     Cooking dinner, El.

Ellie:    Why?

Me:     Well, because I know you'll be hungry soon and Timmy needs something other than that which makes him a Milk-a-holic.

Ellie:    Oh.

(Dramatic Pause while she pulls a chair up to stand on at the counter near me)

Ellie:    Daddy, I need that (pointing).

Me:     Why? (Two can play the "why" game)

Ellie:    Ummm because Ellie need help stir rice. (Fair enough)

Me:     Can you say "Spatula"?

Ellie:    FatchooOH

Me:     SPAT-TU-LA

Ellie:    FatCHOO-OH (smiling and very pleased with herself)

Me:     SP....SP.....SPAT

Ellie:    FFFFFFAT

Me:     Exactly.  Here it is.

We've had some good times in our home confinement of sorts these last few months.  Maybe things don't always go as they should.  But they are GOING nonetheless.  

Her progress since the end of DI has been good.  It has been three weeks since her last Vincristine chemo injection, so it is fantastic to have a break from major side effects for a while.  Her energy has been tremendous and though she physically cannot do everything as fast as Timmy does in terms of running, jumping, and climbing....she certainly tries.  I love the fact that she never gets discouraged on that front either and just keeps plugging away.  The sport of choice with the neighbor kids on the front patio as of late has been lacrosse.  Prior to the game beginning, Ellie makes sure everyone has the proper color stick and assigned ball because of course everyone gets a ball in this particular game. (Well how do YOU play?!) When she and I went outside for a bit while Polly and Timmy went to run an errand, she made sure to set a stick aside for Timmy to have when he got home.....and told me NOT to pick it up.  All righty then.  Often in the evenings, we take Daddy+Twin trips to throw the garbage away in the common bins within our complex which requires about a 30 yard jaunt.  As I am reaching to keep Timmy from leaping off the stairs in front of me, it never fails that 10 yards behind me will be the two-hands-firmly-gripping-the-railing-call "Wait for Ellie!"  

She eats pretty well during these periods between phases and has moved her waking time from 5am to close to 6:30am for the past week.  She does not sleep through the entire night still though as we seem to be in a phase where she does not like to sleep in a less than completely clean diaper.  So, she wakes sometimes as many as 5 times a night and unfortunately for Polly will only allow Mommy to change her.  This undoubtedly is again a lingering mental thing from when her chemo containing excretions from a particular drug taken a while back (cyclophosphomide) would give her skin a burning sensation.  It has also become a 2 year old attention-grabber habit which we need to break sometime soon.  She even on some occasions calls for medicine when she doesn't really need it for phantom mouth sores.  A syringe full of extra special, high quality, ultra powerful Dihydrogen Monoxide (water) seems to do the trick.  It is a tough question to answer on some nights whether her sleeping patterns are a result of chemo or her age, but Polly has done well (with enormous patience!) on trying to break her of the multiple wake up calls.  The power of the "M&M in the morning" bribe can never be underestimated.

Her blood counts have not recovered as quick as we had hoped though they tell us that is to be expected.  She is still neutropenic and now two weeks delayed on starting LTM.  Her platelets have recovered to normal levels and her hemoglobin has slowly risen, which is a very good sign because it negates the need for any transfusions.  Her white blood cell count and thus ANC value have been very much in flux.  She has had a mysterious rash of sorts for the last week and despite no other symptoms, our NP's best guess is that this may be a small virus and thus the reason for the White Blood Cells remaining low as they go to fight it off.  So, we stay inside for another week or so.  Not a bad thing as it will be raining here again most of this upcoming week and Potty Training D-Day is about to begin in the next week or so.  We are going in twice a week for labs right now until she qualifies for LTM and once she does, we'll have her LP+Vincristine and then begin a year and a half worth of daily 6MP pills.

Speaking of pills, one of the Bass Center resources open to us is the ability to see an Occupational therapist for help with taking medication.  We haven't needed this much to date because she has been so good at taking liquids orally and getting everything else through her port.  The 6MP is a difficult thing to dissolve at home despite my best efforts.  I can get it down to 90-95% in a "suspension" with certainty....but when we're talking about chemotherapy efficacy, Polly and I both see no reason to settle for anything less than 100%.  So, while exploring options we thought we would see if she could swallow a pill for the first time and the Therapist she saw today provided some tips she said normally do not work until the kids are 4 or older.  Amazingly, she swallowed every type of candy (posing as pills) they gave her.  WOW.  If she can learn to swallow the 6MP pill, we will be that much closer to our goal.  Her determination is evident and possibly wise beyond her years.

A senior student at school, who I haven't had the pleasure of having in class but know from athletics and passing in the hallways and who I also think fairly high of, put out a remarkable "tweet" a few days ago which rang very true for me:

When you are satisfied with where you're at....then it is time to worry

You see - they do learn!  :)  I smile because I think there are many moments each week where I am learning more from the 120+ kids sitting in the desks around me rather than the other way around.  Progress can be measured sometimes in inches but it is still progress.  Maybe 271 days seems like a long time to be in this battle, but when I hear things like that quote, it reaffirms that we are one day farther away from June 26th AND one day closer to reaching another milestone.

The network of parents who face the same situation as us brings a great deal of strength....especially to Polly and I when a funk can set in with regards to worry.  If there is an ease to our often quiet misery, it is the simple known fact we know to be true that we are not alone.  So, since we are feeling pretty good this weekend, it's time we return some favors and "pay it forward" as a father of a boy who has been in A.L.L. remission for 10 years now eloquently said on a message board post I read this past week.  I hope you will all keep prayers tomorrow (Sunday) in church or wherever you might find a quiet moment to yourself for our fellow little cancer warriors Lilian, Sy, Justin, Mia, Jacob, and of course our sweet Ellie-Belle.  If you have a moment, please check out the NEGU foundation - Click HERE - an amazing organization whose motto is "Never EVER Give Up" set up by two parents who lost their own little girl (Jessie) just two and a half months ago.  Ellie received one of NEGU's "Joy Jars" a while back during one of her longer chemo days at LPCH.  Jessie's supportive touch will be helping many for years to come.  Every type of outreach like that in this horrible world of children's cancer makes distance between support lines a little smaller and our network that provides legs to stand on a little stronger.  That is Progress.  Today was a good day but tomorrow there is more I can do.....and there is definitely more WE should do.

End of DI - Day 258

End points create a time of transition.  There is much to celebrate from where we've just been and we applaud the accomplishments and lessons learned looking back on very trying times.  No more PEG shots, no more awful Dauno, Doxorubicin, or cytarabine.  We will see steroids again but not in such quantity within a given period of time.  In fact, we will not need to go into LPCH more than once a week after her initial part of Maintenance gets underway.  We are done, theoretically, with the most difficult stuff.  And yet as transitions go, this is as much a beginning glimpse of what's ahead as it is us walking out of the DI doorway.  I would be remiss if I did not say it came with some uneasiness.....well, because it does.

Polly and I had the great fortune of going out up to the city to an awesome little french restaurant with her folks and brother to celebrate her birthday last night.  Perfectly cooked meats, rich sauces, truffle oil (!!!) on all the right foods, french wine.....it was a feast and a deserved night away.  Like many memorable milestones, I will never forget what we did this weekend in part because this signified an end, so to speak, of us putting a lot of things on hold.  And so after such a gleeful and appropriate amount of thankfulness for all that we've been blessed with. it made it that much harder to wake up this morning knowing the slight yet unrelenting queasy feeling is still there.  We've started to plan their 3rd birthday party, have actively sought out times for re-enrollment to swim and music classes in the next two months that were so cruelly taken away from Ellie 9 months ago, and are only about 2-3 weeks away from settling on a pre-school for the fall.  It isn't that those things are not exciting enough or that we are planning the arrival of these events with doubt they will occur.  No, it isn't that I don't think she'll be strong enough either....because all you need to do is see her for one hour these days, hear her run through her ABC's with sheer joy and then witness the amount of life that is pouring out of her every happy move to be convinced.  Rather, its me being selfish walking out of the DI door forgetting my day to day pledge for the moment.  I want more.  I want decades more.

I guess at the heart of many of my thoughts is the fact that things have been going so well in terms of her treatment milestones met for quite a while.  She has had minimal complications other than dealing with the side effects expected of the chemo drugs and now has not had to be in-patient due to illness in over 6 months.  Even more remarkable, I remember a time I not too long ago I was cursing Vincristine's name....and her she was just last Friday getting her final DI push of Vincristine where it was the only chemo drug she would get that day....thus Polly and I both considered it an "easy" day.  Experience can broaden but also wise up your perspective in a major way.  So, if we are to be allowed to get back to a semi-normal routine in the next few months and then settle into a more normal way of life until she finishes maintenance treatment in October 2013, I guess I am asking aloud that if the other shoe is going to drop at some point.....God, could you please give us a little warning first so we can prepare ourselves?  There so much life to be lived in the next few years that it just won't be fair if our normalcy is taken away again.

Forgive me....Sunday night reflections do this to me.  Tomorrow we'll be back to it and hoping to make the best out of Monday like no Monday before it.  This journey wears on me on different days than it does Polly and perhaps that's a good thing so someone can at least focus and get up to tell Timmy to get off the coffee table for the 100th time as he is pulling his sister up by the arm to join him and begin throwing things off of it.  Fatigue is a definite factor on many days.  I just don't think I am ever going to be completely comfortable with huge celebrations of cancer milestones in my own mind because it won't be truly over for a very long time.....though believe me, Ellie will never see anything but cheers and smiles on those days from me.  She is learning to ride her strider bike, dress her baby doll, use utensils like an adult, slowly but surely learning the ways of potty training, owning a room when she walks into it with a new dress on.....and doing it all while beating Leukemia and these toxic chemo drugs that are inside her.  As far as I am concerned, she can party like a rock star for milestones as much as she wants.  She certainly deserves to.  In the midst of the celebration, I cannot help but look ahead sometimes to what's possible.  As we start to immerse ourselves into what's ahead, I promise to enjoy it but it won't be without a cautious and watchful eye.

Ellie's labs on Thursday showed an increase in platelets to near 90K and an ANC value just around the 500-600 mark.  Her blood is in recovery mode again and we expect those numbers to rise significantly in the next week.  It is always such a cool thing to see how fast her numbers start to recover.  We will go back in this Thursday for labs again.  She will need to meet the minimums of 75K platelets and 750 ANC values to begin Long Term Maintenance (LTM) on either Friday or the following Monday.  LTM is a series of 30 day segments that are relatively the same.  The cycle repeats itself until her end date of October 2013.  She'll start with a Lumbar Puncture, Vincristine injection, and begin a 5 day course of Prednisone steroids.  She'll have to take a 6MP pill daily and receive a Methotrextate injection 3 times a month. In month two, we repeat it all again with the LP only occurring once every three months.....and onward we go thru LTM.  The best part of the LTM chemo is not supposed to compromise her immune system so harshly and thus the reason we can start to pick up our normal activity again.

There are parts of this journey that compare to Sisyphus' plight with his boulder.  I am certainly not one to give up on something until either my legs give way or someone yanks me off that hill, but I can sympathize with the fatigue that wears on the overall purpose when the boulder seemingly keeps rolling back down.  However, reflecting on the actual reality of the situation keeps me from getting too carried away with worry surprisingly enough.  Verbalizing vulnerability helps push the reset button and allows me to sleep easier to be ready for tomorrow.  Make no mistake, we are at a good point right now.  Last night with a little dinner celebration, Polly and I finally pushed the DI boulder off the other side for good.  At the heart of all that I am lucky to have in this world are the unrealized dreams of my kids which I am experiencing pieces of everyday.  And in this moment right now in both a scientific and social context, there is not a valid reason in the world to believe that won't continue.