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So, I should probably expand a bit on last week’s ultrasound posting. It is indeed slightly premature for me to declare that Austin is three years cancer-free when we have yet to see his new oncologist (who we met for the first time in February) or to receive an all-clear regarding his lungs.  All of that will happen at the end of next week, when we visit the Clinic for labs and a chest x-ray. But, since his lungs have always been far down on the list of things we worry about and since the abdominal ultrasound is what has revealed anything and everything suspicious or dangerous over the past four years, we nonetheless feel pretty darn good with last week’s news.

It’s funny how this one crept up on us. This three-year mark. So unlike last year’s anniversary, for which there was so much anticipation and excitement, all of it dashed with that horrible May 7 appointment. And then we plunged into that surreal in-between world, filled with only fear and dread but no answers or action. I do much better when there’s action. When I can see the mountain in front of me, even if it’s absurdly steep, I’m able to gear up, draw upon my strength and plan out exactly how I’ll scale it. But when it’s only fog I see, only vague warnings about a pending cliff or a jagged slope with nothing concrete or real, then I’m paralyzed. Last May, I felt paralyzed. Terrified beyond anything in memory (and there’s been much terror to remember). I had no idea what we were facing, couldn’t even begin to plan our attack — but I felt certain something was out there. Something deadly was lurking there in the fog, waiting for us to pass, waiting for him. And I was paralyzed.

Of course, it all passed as nothing. Those sixteen days a mere post-script to our crazy story. And I find myself back again, in the very same place I was when I wrote this on May 6 of last year, the night before his faulty “something” scan.

And I’ll say it again, with a slight edit to the number: Come what may, it’s been a damn good three years.

We are at that time of year, as we are so often are, that is filled with milestones and anniversaries. Some of them are good, some bad, all tinged with reminders both subtle and glaring of where we’ve been and where we might someday end up. Last Wednesday was Austin’s kindergarten musical performance, not an obvious cancer milestone in anyone’s life, but filled with significance nonetheless. It should go without saying that there is just something about watching five and six-year-olds go through a song and dance routine, all waving their arms slightly off rhythm, scrunching up their faces and waving to their parents one minute, the perfect image of mature composure the next. All coupled with their eager filing from risers to stage to recite their carefully rehearsed but poorly enunciated lines, and the whole thing is just adorable to the point of tears.

But for us, it also stood in stark contrast to Braedan’s kindergarten musical three short — and very very long — years ago. That day, way more dramatic than this, is described here. And let me tell you, it was not as easy as I made it sound in that rather upbeat review. It was instead filled with a lot of anxious clock-watching, as I wondered if I would yet again break the heart of my elder child in my desperate attempt to keep my younger child alive. So it was with enormous relief that we watched Austin sing his songs and wave his hands and recite his line (inappropriate though it was for a child who can’t pronounce his Rs): “And you would be right, with most of those terms . . . You see, ladies and gentlemen, we are the worms!” with no pending hospital visits, no Sophie’s Choice decision looming in our near future, no fear of what the next day, week, month might hold. Instead, it was all sweetness and pride, worms and snakes, and even Braedan and two other older siblings were invited to provide comic relief in the form of cheesy bat jokes.

Austin on my lap three years ago

Austin last week, ready to perform

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Austin on stage, reciting his line

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Braedan on stage (far right), reciting his line

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And if anyone is really paying attention, you’ll notice that Austin was wearing the same shirt last week that Braedan wore to his kindergarten show. We, of course, went to the Colony for dinner that night but I have no pictures of grilled cheese-induced ecstasy.

But, if you want a real milestone, a truly significant, did-it-again milestone, here it is, hidden in the midst of this post about a school concert . . . Austin had an abdominal ultrasound today. We opted to do it back at Rainbow, even though his new oncologist is at the Clinic, because only this particular radiologist knows what to expect from his crazy misshapen kidney. So we’ll have an additional appointment in a few weeks, with a chest x-ray and labs and a physical, but for now, from today’s scan which looks at his kidney and liver and is the thing that really matters most to us, Austin is three years cancer-free. Yes, that’s right. That’s what I snuck in here at the end of this silly little post. AUSTIN IS THREE YEARS CANCER-FREE. Ka-pow.

The Boston Marathon is special. I’ve never run it. But I watched it with great intensity all of my undergrad years at Tufts. I would wake up early on Patriots Day, pack myself a lunch, hop on the T, and settle myself roadside right around mile 22, at the top of the infamous Heartbreak Hill. And I would stand there hour after hour, often with tears streaming down my cheeks, cheering til my voice was gone and my hands hurt from clapping. This event is truly unlike any marathon I’ve seen, as either a runner or as a spectator. I’ve run in awesome marathons, including twice in Chicago which is a total party from start to finish. But it is nothing like Boston. Boston is special.

It’s starts at least a week early with daily human interest stories on the local news and in the Boston Globe. These are your typical tug-at-your-heartstrings,-look-at-all-the-obstacles-this-runner-has-overcome-to-be-here kind of stories. The oldest runner, the youngest runner, the disabled one, the one running for his/her dying parents/sibling/spouse/child/friend, all tinged with an Olympic hero quality, except that this is Every Man and Every Woman, strapping on their running shoes and finding glory. I love that shit.

The day itself is filled with moments, both public and personal, large and small, stories of immense personal sacrifice and triumph, all embodying the strength of the human body and the strength of the human spirit. I once saw a young man running with the words “Will You Marry Me?” scrawled on his t-shirt dropping to his knees right at mile 22 to propose to his girlfriend on the sidelines. He’d been carrying her ring in his sweaty hands for twenty-two miles. Numerous times, I’ve seen Dick and Rick Hoyt, the now famous father pushing his grown son in a  wheelchair the entire length of the race. And I’ve seen thousands of ordinary men and women who have dedicated months to training and are literally on the road to their life’s greatest accomplishment.

What is most special about that day is the overwhelming feeling of camaraderie that pervades the city. People don’t come out to root for the stars like at most sporting events; this is not about cheering on overpaid professionals, who may be perfectly good at what they do but do not always earn the hero moniker. Every one is there rooting for people they don’t even know, people they’ll never know. It’s not like that at all marathons. I can tell you from experience that there are long stretches of the Cleveland Marathon where fans silently line the streets and crane their necks looking down the road for that single particular person they know, completely ignoring all the struggling runners right in front of them.  The last time I ran it, in fact, I found myself shouting at the spectators, “Cheer for everyone! Cheer for everyone!” thinking, “Who raised these people?” It obviously wasn’t my mom, who instilled in us a don’t-stop-cheering-until-the-last-person-crosses-the-finish-line mentality.  She had her own Boston Marathon moment, running it in 1979 when there were still relatively few women on the road. She said that as she neared the halfway mark, a veritable scream arose from the women of Wellesley College and it was a few seconds before she realized they were screaming for her. There she was, in her early thirties, with that trademark long white hair blowing in the wind behind her, keeping up with the big dogs, running with mostly men as she let the feminists of Wellesley carry her forward to her best ever finish of 3 hours and 4 minutes.

Boston is part of my lore, the state in which I was born and city in which I was educated. As it is for so many runners, it remains the single marathon I would ever allow to lure me back on the road for that kind of distance. It is special. And it will continue to be so, even when we feel helpless and vulnerable, sad and angry. Braedan and I are running in a 5K next week, his first ever road race. I like to imagine that someday he might decide to run the Boston Marathon. And if he does, I’ll be right there at the finish line, cheering him — and everyone else — on. Because that’s what we do.

 

Sometimes I don’t realize just how sheltered my children are.

My mom and I took the boys to Washington DC for a few days over their Spring Break. It was a great trip to a truly beautiful city, one the boys tackled with gusto on their Razor scooters as they weaved in and out of traffic on sidewalks and streets and covered a full seven miles on one day and six the next, my mom and I speed walking behind them. They loved the carousel and the Spy Museum, were massively disappointed that the paddle boats on the tidal basin were closed due to wind, and had mixed reactions to the war memorials. Braedan was old enough to be awed by the awe-inspiring list of names on the Vietnam Memorial Wall, asking over and over again, “All these names, mom? All these people died??” Austin, only six, tugged on my hand and whined, “Can I ride my scooter now? Can I ride my scooter now?” as we tried to quietly pass those visitors running their fingers over the names of their loved ones.

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But the single thing that defined our trip above all else was Braedan’s reaction to the homeless people. He noticed them our very first evening, as we walked back towards our hotel after a nighttime viewing of the White House. There were three, huddled under blankets in the entryway of an office building, and he was stunned. I hadn’t realized before how infrequently we walk the streets of our own downtown and see anyone begging (not that they don’t exist in Cleveland, it’s just that my kids aren’t there to see them). He stopped immediately to question us and then eyed the bag I was carrying with the desserts my mom and I had been carefully saving til later. “Do you want to give one of these?” I asked, somewhat begrudgingly. But I forgot my sweet tooth as I watched Braedan rush back with a plastic fork and a slice of cheesecake to wish a homeless man a Happy Easter. “I get lots of treats for Easter,” he announced to us with a proud bounce in his step. “I told him this was his Easter treat.”

He was not so easily satisfied in his quest to make a difference though and began carefully planning what he would order in restaurants to ensure he had leftovers appropriate to give away. He would usually scope out the scene outside the restaurant prior to entering to determine exactly who he would return to with his take-away box (somehow, “doggy bag” just doesn’t feel right in this context). This became the main topic of our conversations as well, as Braedan asked careful and impressively mature questions on the subject at every meal, including “Are homeless people educated?” and “Where are their families?” My mom and I spent a lot of time talking about the many complex reasons people become homeless, the services available to them (especially for those with children), as well as the many issues to be addressed when trying to “solve” the problem. We covered everything from affordable health care to jobs with a living wage to access to high quality education, plus mental illness, drug or alcohol addiction, and poor personal choices.

Looking to the future, he announced that after he makes millions of dollars for the app he’s planning to design (what this million-dollar app is going to do, he has yet to explain), he will give all that money away to homeless people. I tried to bring him back to the present by suggesting he use his role as a student council member to organize a school food drive, which he eagerly jumped on . . . until I told him there are homeless people and food kitchens in Cleveland too. “No!” he said with certainty. “I want us to collect canned food and send it to Washington DC!” Humph, I guess we need to head to downtown Cleveland and stroll the streets one of these nights. Under some bridges might help too.

One evening, after he gave his leftovers to a woman smoking a cigarette, which I commented was one possible reason people may choose not to donate to her, he said, “Yeah, but mom, even people who make bad decisions deserve food.” As for my job as a bleeding heart liberal mother, I have two words: mission accomplished.

Ok, so that was an unintended hiatus.  I guess blogging is sort of like exercise in that the longer you go without doing it, the harder it is to ever start doing it again.  Anyway, here’s the post-St Baldrick’s wrap-up I started writing a full three weeks ago.

Another St Baldrick’s season has come to a close.  St. Patrick’s Day was great, as always, even with the shift in time and the cold gray weather. Mark is bald once again, time number eight if you count the two at-home shaves he did prior to Austin’s first and second rounds of chemo.  This time he was joined by our friend Sagi, who had a serious head of hair:

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(Mark’s sacrifice wasn’t quite so big….)

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The morning after St Patrick’s Day, I attended a breakfast at Rainbow with the CEO of the national St. Baldrick’s Foundation, as well as the St Baldrick’s-funded research team at Rainbow (almost all bald) and the organizers of all the local events, which totaled eight and raised over $495,000, making Cleveland a force to be reckoned with in the world of pediatric cancer research. I should mention that our little Cleveland Heights event is hovering a mere $540 below my grand goal of $45,000 and is in fifth place in the state of Ohio for dollars raised.

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It was very inspiring to hear Kathleen speak and to be surrounded by so many other people putting their hearts and souls (and hair) into this cause.  She talked a lot about the changing face of research funding in our country given the economy and how bleak the prospects are for the coming years, mentioning that the St. Baldrick’s board of directors would really like to transform this once unknown organization based on the crazy idea of a couple of guys from a 33-million-dollar-a-year bit player into a 100-million-dollar-a-year big time player. This is, of course, wildly ambitious and will take an enormous effort on behalf of all the St. Baldrick’s foot soldiers around the country, but I do believe it can be done. And I believe it must. And I believe that we, right here in Cleveland and right here at the Community Center, can help make that happen.

I will come calling . . .

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