I don't ever want to go back to that place of last year. I give thanks daily for the progress she has made and hope to Dear God we are always moving forward. HOPE to DEAR GOD. And so herein lies the cruel twist that makes this a search for a resolution with a constant theme sung in a minor key. It is a tug of war between impatience with a large dose of helplessness versus the success we have on many days to remain in the moment where the worries we cannot control seem as distant as our lives pre-diagnosis do. Ellie's maturing mind is comprehending more and more about what is going on and we are beginning to tackle the normal growth challenges of a school aged child at the same time. As she thrives so wonderfully right now, the things we continually hope for seem real, they seem tangible, and they are there to be had!!! I want her dreams of the future to be secure and I want to rest peacefully with them myself. But with all of the weekly hints I see meant to celebrate strength derived from every second she has been in remission since July 2011, I will also inevitably witness the unexpected reminder that brings to my knees, yanking us back in time, where cancer regains control. Sometimes I feel like I need to prepare something to have in my back pocket because if it came to be, we would have to explain it to her this time around, but in a lifestyle that demands a constant present tense I cannot allow myself to go down that road yet. So, I end up going to sleep on some nights wrestling with the "what ifs" and trying to be okay with an uncertain future. It can be very tough.
I've said it many times before, but the parent world within childhood cancer has been one of the most incredible experiences I have been a part of my entire life. The strength in numbers can often be a small curse though as shared ups and downs are constant and relentless. The extra burden to bear with treatment, physical side effects, school issues, and delicate handling of germs brings us all together with very deep mutual respect. And so when someone loses their battle, regardless of how close we actually were, I feel there is no other choice but to face an ultimate fear by honoring their battle with the way we fight our own. It is a tearful journey on many days, there is no other way to describe it. We do keep going though. We have to.
The LPCH family lost a little warrior a few weeks back in little "Sy" who suffered from Liver cancer. He was being treated in the same place Ellie goes each week. I had come to know about his fight less than a year ago about the time he was deemed terminal. Polly and I sent a note to his parents expressing our prayers of support and we had the privilege of following his final months which were spent doing so many things he really enjoyed, particularly every second possible with family. The pictures they posted told a remarkable story of character. Not the least of which was Sy posing with a starting linebacker for the San Francisco 49ers who made a special trip to visit Sy at his house some months ago. This upcoming weekend, the 49ers play for the 2013 Super Bowl and I can only imagine the excitement of an 11 year old boy watching from above his favorite team, now cancer free, pain free, and eternally at peace. Knowing Sy's mom and dad are home right now struggling to find a way through enormous grief is the harshest part of this unique parental world.
I also found out this past week a former student/player of mine passed after a two year battle with Ewings Sarcoma. Not to pile on in one single blog post, but it bears mentioning because I've always thought you become aware of things for a reason. My thoughts this entire day have been on him and the incredible void now left for his poor mom. So much sadness and so little understanding for us all of the bigger picture (if there is one here....because I have to admit sometimes I wonder. I know better but I do wonder). I was told of his courageous words in his final days asking for help to take care of his mom after him and trying to find peace the best way he knew how. In the time I knew him, he was always very passionate about his friends and working as hard as he could at the things he enjoyed doing. I don't care how good you are a something, if you work at it with everything you've got, you deserve respect and you deserve results....and both of those things will eventually come. From what I understand, he was in control of the things he wanted to the very end. That gets my ultimate respect.
I won't forget the lessons of grace under the ultimate duress both boys have now taught me. RIP sweet Sy and my good man, Kurtis. I will continue to struggle with why they were not allowed to keep fighting with us....because lord knows they would have gladly kept going as tt isn't right and it's not fair. Thank you for making me a better Dad for one of your fellow cancer warriors. I promise I will make you both proud.
On a different note, Ellie's hair has really come back strong. Strong and curly! Polly and I definitely like the post chemo curly version better than the pre-diagnosis straight version. She fondly combs it when looking in the mirror and tells us she thinks it is getting "really" long (below her ears now). Just after new years, we were able to finally get a long enough tuft into a small pony tail and the innocent smile on her face, something she has never lost despite the multitude of things she has been through, was there bright as ever. So, when pre-school announced a couple weeks ago that this past Wednesday would be "Crazy Hair Day", Ellie lit up with a giddy laugh and announced to us all she would be wearing FIVE PONY TAILS that day. Let's face it, that's just crazy. Leading up to the day, whenever she would remind us of the event coming up as well as use complete clarity in demanding the number of pony tails reach the five count (no more, no less), I'd get the biggest kick out of her small rocking motion up to her tip toes for a brief moment when she'd make her exclamations. This was a big deal and she knew it.
3 of the 5 Ponytails (other 2 in back)
I found this to be nothing short of a triumph of the human spirit. In that moment, she was whole and she was perfect. This was a little victory that spoke thunderous volumes of what may and should be down the road for her. I look forward to that so badly that impatience gets the best of me some days....like today So, I am going to keep looking at where we've been, now almost a full year removed from the harshest times, and continue to make the most of a single day at work, on the field, or at home in large part because we all must carry on for those who have sacrificed before us and can no longer do so. Ellie has been on this kick lately of asking Polly, completely unprovoked, before bedtime, "Mommy, what we going to do tomorrow?" With every answer we give her comes a promise of something to look forward to which she then embraces without reservation. She's suddenly got this sense of "future" in her sight every night before bed and that gives me pause. I can only conclude that from every harsh reality we get word of, there seems to be five sprouts of hope popping up in its place either immediately before or after....certainly not just a coincidence. Amazing how that works and if you think about it from this perspective, the odds are and will be forever in our favor.
