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
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