Fly - Day 482

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

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

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

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

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

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

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

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

Pinkalicious - Day 477

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

 

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

 

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

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

 

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

xoxo
Polly and Jeff