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