Off treatment life is obviously much easier to deal with. We do normal things now everyday, not just some days, and keep a schedule busier than before the stork rolled in with a couple of kids at the doorstep a few years back. It's refreshing, it's invigorating, it's terrifying and it's amazingly wonderful. Today I woke up to the sound of both kids gleefully playing together in their room (until the clock turns the magical color of Green signifying they can officially vacate their beds), sat with both in church while they squirmed through the Homily, hung out with both on the monkey bars, cooked them up a homemade dinner, and then got unsolicited offers for kisses before bed. Not a bad Sunday. Maybe a perfect day. And as they are now both sleeping soundly for the night with time slowly slipping away from the weekend, I am wondering if we can keep this pattern going. Whatever is happening here, I'd like it to stay a while.
This new found freedom is a tug of war between wanting to leave the last few years behind as far as possible and understanding you will have this "worry" to live with for many years to come. In those first few weeks after diagnosis when the hospital days were long, thick, and draining....the hope was that she would just live. It was a bit of a naive thought looking back now but let's face it, the first words we all think of when cancer enters the building is...."is she going to die?". You distance yourself a significant amount from the acuteness of that train of thought because there is a process with thousands of steps to take before having to ever be faced with that sort of ultimatum (if ever at all). I remember writing in a post during that initial time period about wanting to see her walk into her first day of Kindergarten as a dream we were aspiring to make a reality. Now today, two and a half years later, I find myself touring potential kindergartens for her to attend seven short months from now. We are discussing merits of resources both kids may have with each school as they progress through their early years, we are exploring innovative learning styles to expose them to, and we are talking about where they will be able to grow further in a community that embraces where they have come from....and who they are soon to become. We are NOT talking about survival anymore. We are not trying to just get through the night so that we can seek more advice from the doc in the morning. We are living right NOW with an opportunity to leave our world of the last few years behind.
But I am not so sure how far I want to go with this. How horrible is that to say? Right now is good. Right now is HEAVEN. I want to stay here. I want to STAY here. Why do we have to keep transitioning in time if right now works. She is healthy, we are able to make fantastic short terms plans, we can do anything we want TODAY, and we are just doing what anyone else wants to do. We're living. Let's stay here.
Don't get me wrong, I am not trying to deny progress forward. What I am saying is that the future in my eyes sometimes represents a bit of an unknown that could remove all of these good things, occasions for celebrations, and opportunities for sitting back in your chair to stare at the sunset and letting your eyes marvel at the simplicity of what good times really entail. We are more than just peering over what seemed like an insurmountable wall a few years back. We are standing tall and basking in the sun from the other side. I just don't know if it is something to embrace fully and completely....or is it teasing us like the dollar bill on a fish wire in the plaza connected to someone who can control the situation with a simple "Yank".
Last week, Ellie had her two month of off-treatment check up and blood test. Everything came back great. Her white blood cell count is climbing and her ANC value (immune system rating) was over halfway back to normal levels. Oh my goodness, she has an near fully capable immune system again! It was a quick appointment, and I'd be lying if I didn't think of the worst for a few seconds, but the day felt routine. We were free for another month. Now back to our regular lives, yes?!? No, of course not....it is never that easy.
Later than night I got an email from a friend in Los Angeles who I connected with a few weeks into our induction therapy after diagnosis in July of 2011. We were introduced to each other because his daughter had been diagnosed with the exact same form of A.L.L as Ellie just 6 months prior. He and I began to exchange emails over the next several months. With the treatment protocols being near identical, I had someone to ask questions to about various phases of treatment from a dad's perspective. As we were entering a new phase of chemo, he was typically finishing it. Everything was always on the up and up. The hopeful voice is always the welcome voice when it comes to the day to day in our world. I've said this before....you find a very strong connection with those who are walking beside you in this battle. Anyways, his daughter had finished treatment early last spring (2013) and I had not heard from him in a while. Ironic he would email me the same day as Ellie's monthly blood test, but so be it. His daughter was classified from the beginning as Standard Risk. Ellie was deemed High Risk. The two usually differ by white blood cell count on diagnosis. The survival percentages favor the standard risk slightly more but really the only difference is the type and amounts of chemo you get. His email on this day was to tell me that after only one year, almost to the day, his daughter had relapsed. He was now settling into his new home in Memphis at St Jude in attempt to get the best relapse therapy possible. I near dropped my phone from which I was reading the email from. How could this be???? How could this happen???? Why Why Why???? DAMMIT!!!!!!!
The next day I was at school teaching and trying to concentrate....but amongst the daily grind of lesson plans, lab prep, purchase order signatures, and soccer practice....my head was abuzz. In some cases the music was deafening. I could not stop thinking about this poor little girl. This was someone else's Ellie who had been through the identical set of procedures we had and experienced a full year of treatment before being thrust back into survival mode. I cannot tell you why a particular song bounces between my brain cells because it just happens....even if it isn't a perfect fit for what the song was originally intended for. On this day it was Rihanna's "Stay". I don't think the original intent of the song was meant for what I was applying it to, but the tone of the singer emits an emotion that has a raw sound to it. There is a vibrato in her voice that evokes pain yet demands we find a way to salvage today. Why was this in my head? I have not a clue. I listen to the radio about 10 minutes to work and 10 more on the way home. Things heard can get filed away unknowingly for use at a later time. Two months from now, it'll be a different song, I'm sure, but I do know that if it helps me sort through the chaos of this emotional cancer world roller coaster that just goes on and on for years...then it serves a good purpose.
We are teased with what a normal life feels like. Where the sky may be the limit again after so much grief. We do this dance off treatment in a careful manner but still with the knowledge that there really is zero control we possess over the situation. The rug may be ripped out from under us at any place and at any moment. It can be a thousand pound weight somedays. And here I was fortunate enough to be at work after a clear 2-month Ellie blood test, but with one of teammates now forced to turn back the clock and begin again the three year gauntlet of chemotherapy with an added step of a bone marrow transplant (which carries a 3 month hospital stay with it). I am amazed at how strong and hopeful he was in his email and how fragile I became for a day. It can all change so fast. So very fast. Forgive me for wanting to stay in the moment a little while longer as I try to get comfortable with this proverbial weight belt of sorts. I wanted to share a post from a fellow Mom of a child with A.L.L. who summed up a night we all who have walked this cancer path with our kids have had on this journey. It is certainly less intense now being off treatment, but the emotional toll is still ever present.
It is one of those nights
where you can't hold back the tears
for no good reason.
So, we do what we do best
hide and cry for a quick minute or two,
wipe the tears away,
go to your kids bedrooms to read "Tickle Monster"
with a smile and a laugh,
kiss them good night,
then walk with away with the same tears
you had turned off for those few moments with your kids
You all know what I mean...
Though staying in one place for quite sometime is comforting, its also impossible. I know this. Call us a couple of parents that want to keep our kids at the age of five forever (minus the whining for silly things when we are in stores or the going "limp" when we need them to stand up and put their clothes on....I could really do without that. Seriously.). This rationalization of how to proceed cautiously toward the future while respecting the "struggle" with where tomorrow may take us is something there is no preparation for. As an educator, I respect more than anything a colleague or mentor that knows and preaches daily that he or she will always have more to learn that what they can possibly teach to others. The 21st century can throw all the technology and innovative verbiage it wants at the learning process, but these are just minor tools. I am convinced progress only occurs when we can open our minds to walking out from where we stay stagnant and embrace the good news that frees our thoughts from burdensome worry. I am simply at the mercy of what is supposed to happen next....to which, of course, I will never have a clue.
I am not there. I hope to be someday. Until then, the thought of relapse and all that it brings with it is ever present on many a occasion. Polly and I have great friends and family around us all the time...so we are never far from support. That is a pure god send, let me tell you. I watch Ellie swinging on the monkey bars and smiling bigger every time she decides to go one bar further. She has an intensely eager curiosity to life that is undoubtedly linked to her instinctual ability to fight as she has for the last 945 days. I sometimes will painfully flashback to Day 4 when we were inpatient for the very first time (and I did upon hearing of my friend's daughter's relapse) when two nurses carefully took Ellie from our arms and pinned her to a chair. While each held an arm and a leg, a third stood over her to reassure her everything would be OK. Two additional nurses (bless them for the job they had to do) then came in with a needle each the size of my finger and to jab into her thighs a dose of PEG-Aspariginaise....one of the early chemos she received to rid her of the 96% cancer cells in her blood. It is what it is with this wretched disease.
Those flash backs are few and far between these days as we carry on to this new normal, but I am actively looking for a way to be more at peace in the off treatment life. Even if the "now" only lasts a day's worth of hours, I want to mentally stay here with firm resolve in that brief time span...and enjoy every last second. The coaching world I know so well demands I stay one step ahead of the opposition, I anticipate a player's state of being before he enters the pitch, I recognize limitations, and I fully embrace those things the team does exceptionally well. If the chips are in the right place, the result should take care of itself. So perhaps this brief day of freaking out I had, with news of a friend's relapse, was not so much about wanting to stay put and ignore what the future may bring.....but rather it was a reminder to the Stay the course.
Yesterday, my team put a ball in the net with 3 minutes to play in a game that looked to be fit for a frustrating draw. It was a little unexpected magic that won the game. (Soccer is pretty awesome that way) There is absolutely nothing I can do from the sideline to directly change things. I'm just there to cheerlead, hope for a positive outcome, and have a little Faith that these worries that seem so profound in a given moment cannot overshadow all of the work we have done to get to this point. Despite the lack of ultimate control, we are in a new normal now. We've arrived. We'e here NOW so lets not get caught up in what may be or what could be. The magical moments will show themselves when the time is right. In terms of moving forward, We will never.....ever....give up. With God's help, with all the incredible people I see everyday, with my family, and with Ellie's hand in mine, we're here to stay.
Thanks for letting me rant a bit on a Sunday. This is one of our favorite pictures of Ellie at her Gratitude Party, marking the end of treatment last November (2013).
Please pray tonight are for our friends in Memphis at St Jude. Thankyou.
