Stripes on the Road
Hey, dad here.
As most of you know, I am into bicycling. And challenging myself. And, frankly, I’m a heavy guy – jokingly called the “clydesdales”. The intersection of these has led me to get into climbing on the bike. Instead of measuring rides in horizontal miles, I measure them in vertical feet. At 220#, that’s hard. It is a real challenge. I am slow, and I huff and puff, my heart hammers away in my chest, and I get passed.
When the grade gets over about 10%, I slow to a crawl. My heart rate goes into the stratosphere, I drool, and I pant like a dog in a hot car. I play this game with myself, on such climbs. I watch the stripes on the road. Quads strain – get to the beginning of the next stripe! Lungs scream –now get past that stripe. Knees yelp – ok, next stripe. Do it again, and again, and again – eventually, you run out of stripes. You get to the top of the hill, or at least the top of the steep part.
One stripe looks pretty much like the next, but as each one passes, you’ve gained a few more vertical feet, suppressed your urges to quit, proven to yourself that you can, as the inimitable Phil Liggett would say, drag your carcass up that mountain. It isn’t easy to do, but it also isn’t too interesting to talk about (the stripe is yellow again, oh look it ran out, ok next stripe is . . . yellow). Lately, the whole thing has seemed like a good analogy for maintenance therapy.
We are going slow. It is hard. We are getting passed – in school, at work, socially – as we grind our way up the hill. But we are gaining ground, every day. Analogously, each stripe could be thought of as a chemo cycle. We have done many, many of these now. On May 23rd, 2013 - if all goes to plan - we’ll crest the hill.
Each chemo cycle in maintenance starts with a IT (spinal tap) methotrexate dose to kill any leukemic cells which may have crossed the blood/brain barrier. This is the hardest procedure. It also kicks off a 5 day dex pulse, and includes IV vincristine. Clinic visist on weeks 5 and 9 omit the IT methotrexate, but include the dex pulse and vincristine. Then we kick off another cycle. Regardless of what week it is, Owain gets 6MP every night, methotrexate (13 pills) every Wednesday night.
We’ve already done this so many times, climbed so far, dug so deep. The next 12 week cycle starts Aug 1, 2012. Just pass the stripe. Then Oct 24, 2012 . . . get to the next stripe. Now pass another one - Jan 16, 2013. Get to another – April 17, 2013. Then, in the middle of that stripe – the road will tip down, the grade will decrease, and we can start reclaiming our breath, and our speed. And start catching up.
There’s no denying that there have been serious consequences in terms of stress, health, and academic performance. Owain starts middle school at Hamilton next year (an advanced placement school) and we are, frankly, nervous. It will be hard to keep up if Owain can only get to school 10% of the time, like he did last year. He’ll have to dig in, and kick hard, and make it happen – then once he gets to May, he’ll need to dig in again to accelerate, to catch up and compensate for the consequences of treatment.
But that’s too far ahead. For now, we’re just riding to the end of this stripe, then the beginning of the next.
Medically, Owain is essentially unchanged. He’s nauseated and fatigued most of the time. Weight gain continues to be an issue. Side effects abound. His counts are always too high, but we can’t add much more chemo because his liver hovers around 10x normal, and we’ve already seen where that can go. We can’t do anything about the high counts but worry, and worrying doesn’t do much good, so we try not to do much of that. Like on the bike, you really don’t know what’s around the next bend until you get there.
Owain continues to amaze us with his good outlook, good spirits, and good efforts. Dylan, too, holds it all – and us – together with his playful nature, sense of humor, and sweetness.
Why all the riding? In a week, I’ll lead a team of about 60 riders in the Seattle to Portland – the CRUSH KIDS’ CANCER cycling team. I ride for Owain, and also for Pablo, and Mia, and Bella, and Rhema, and so many other kids who’ve paid too dearly.
Last year we raised about $55k to fund clinical trials and SAVED LIVES. Please be a part of something even bigger this year. HELP US in whatever way you can. The details of the research are here. If, heaven forbid, Owain turns the corner to find another hill – the dreaded “R” word –this may be his – and will be so many other childrens’ - best chance for survival.
Together, we can beat childhood cancer. Just dig deep. Take it one stripe at a time. Please help however you can – your voice is important, even if your pockets aren't deep.
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A shout out to all of our friends and fellow warriors. We love you, and we fight for you, as we know you do for us.
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