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Last night, after I finished entering in all the cash online and had made my final calculations, I was so excited to announce that our event raised a grand total of $112,793. Feeling satisfied and proud, I was eager to share. When I read the news of Rebecca Meyer’s latest MRI.

And it wasn’t good.

And sometimes it feels like we just don’t do enough. Like we just can’t act fast enough. All those thousands of dollars raised in her name and in her honor and what good will it do?  Sure, it may save some other child down the road and yes, of course, that’s noble and right and ultimately what we all want, but at this moment, for this child, for this family, they just want her. They’re not thinking about the new research we’ll get in two years or five years or ten years.  They need it now, they need it tomorrow.

You may be scratching your heads and thinking back to Sunday’s event and wondering, “Wait…was she there? Did I see this sick girl?” Well, yes, she was there. But no, you didn’t see a sick girl. She was well. Happy, vibrant, head full of hair, face full of light. She was very, very much alive.

She’s here last Friday, in pink head to toe, sticking out her tongue like any five-year-old should:

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And here again, on Sunday, watching with glee as her older sister shaves her head in her honor:

And again, with her bald schoolmates around her (goodness, these Fairfaxians like to stick out their tongues, huh?):
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She is alive, goddammit, and she deserves to stay that way.

A couple of times on Sunday, I referred to people’s inner beauty, as in, “These girls are showing us what it means to be beautiful on the inside,” implying, of course, that they were no longer beautiful on the outside.  But I was all wrong.

They are indeed beautiful on the outside. I just needed my own definition of beauty challenged by them. By you. All of you.

Sunday was full of beauty; it was all around us.

This is the beauty of family: Father and son working together to save one of their own (and remembering to have fun in the process).

And this is the beauty of family: A father shaving in solidarity with his son, whose bald head took some getting used to.

This is the beauty of small people doing big things:

This is multiple generations of beauty: grandmother and granddaughter watching the mother shave her head.

Contemplation can be beautiful:
Courage can be beautiful:
And pride can be beautiful:
Beauty is young:
And old (relatively speaking, at least!):
And male:
And female:
And this is the beauty of friendship:

If you want a few more examples of beauty, check out the first wave of photos here. More to come shortly.

Over the past week, I’ve been called an inspiration, a powerhouse and — my personal fave — a force of nature. While that all makes me feel really, really good, this is not a one-woman-show, people. There is an army of volunteers who stand behind me and beside me without whom our event could never happen.

First of all, the barbers. They are on their feet shaving head after head after head for hours on end. They hunch over the little kids and let the very littlest stand up in the chairs. They calm the nervous shaking bodies and they comfort the crying. They laugh and they cheer and they do it with style.

So, a most enormous and heartfelt THANK YOU to Alex Quintana and his crew from Quintana’s: Theo, Mike and Jessica.

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And, of course, to the fabulous Shawn Paul, aided and abetted by Bethany and Angela.

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Thank you also to Rachel and Megan from Kreate and Rick, Laura, Racheal and Caroline, without whom there would be no bald heads (and what would be the point of that?).

Thank you to my tireless Treasurers and Registrars: Becky, Ann, Christie, Nancy (mom), Mark (honey), Jennifer, Julie, Julie, Kristy, Brenna, Ashlie, and Melissa. No one could check in and no one could give money if it weren’t for your hard work (and what would be the point of that?).

Thank you to everyone who worked at the Bake Sale table, especially Shari, Sheryl, Joe, Simon, and Logan, and of course, to everyone who baked for the Bake Sale, even though I have no idea who you are or what you brought. When I headed over to start emceeing, there were maybe two items on the table and when I finished four hours later, there was only one item on the table and I asked a volunteer if there had been any food at all. “Oh yes!” she assured me, and she must have been right because it brought in an additional $338. Nicely done on that!

Thank you to Simone Quartell for donating the American Girl Doll and to Nancy, Nicole, Kristi and Amelia for selling raffle tickets. We made one little girl very happy, plus raised another $478 for cancer research.

Thank you to anyone and everyone who stepped in and did jobs small — sweeping up all the hair off the floor (Nancy and Caroline) — and big — taking all the beautiful photos which you will soon get to see (Dallas and Sagi).

Thank you to the City of Cleveland Heights for so graciously hosting us year after year.

Thank you to Jason for helping me celebrate my own knight in shining armor, Mark, as he was inducted into the Knights of the Bald Table. I think your bagpiping skills served a recruiting tool for next year and the year after that as we now have lots of little boys (and girls) eagerly awaiting their own knighthoods.

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I couldn’t hold the microphone, the St Baldrick’s-issued wand and the script all at the same time!

And, of course, without question, the biggest, deepest, most well-earned THANK YOU to all the men, women, boys, and girls who shaved their heads or donated their locks on behalf of sick children. The entire room was overflowing with raw and honest examples of generosity and kindness. The incredible bravery of our shavees was matched only by their pure joy at having done something so special.

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This is a composite of kids from Team Fairfax centered around Becca, in whose honor they all shaved. And, yes, those are four GIRLS in the pics on top, demonstrating the truest meaning of friendship. Braedan happily reported that no one was made fun of at school today (and good thing because if they were, I would have marched my ass in there and gone house on those kids whose classes I spoke to all day Friday) and that they were congratulated by many, many, many. He feels like they’re all part of something bigger, like they’ve shared an important life experience that has brought them closer (“even,” as he noted tonight with some amazement, “the girls”). It is a powerful lesson these children have learned together. And I am so glad to have been part of it.

I have a thousand other stories to tell and about that many photos to share so check back in the next few days. But for now, I simply say Thank You.

I am beyond exhausted so this will be the short one.

But I am also beyond thrilled and beyond touched and beyond awed by what I saw today. The incredible outpouring of support and love, friendship and bravery, kindness and generosity left me breathless.  I am so honored to have been able to bring this event to so many people and I am so moved by all those who have embraced it with such enthusiasm.

As of this moment, counting the $101,116 we’ve raised online and the $2,450 check we expect from the lunchroom competitions at Roxboro Middle School, and the Bake Sale and American Girl Doll proceeds, and the cash and checks turned in today, we should (at this moment in time) have raised $108,257.

Wow. Just wow.

My local readers: Please promise me that tomorrow, wherever you go about town, if you see a bald man, woman, boy or girl, you stop and tell them good job.  Good job, my bald friends, good good job.

In four more days, I will be surrounded by bald heads. In fact, many of you reading this will be surrounded by bald heads. In addition to the 160 registered participants at my event this Sunday (you read that right: 160 participants!), another 114 students will shave at University School on Friday (and yes, as of this moment in time, we ARE beating them in the fundraising department), plus 56 people at Rainbow on Friday morning, 180 in Rocky River on Saturday and 70 more at A. J.Rocco’s on Monday. So we should ALL be surrounded by bald heads by this time next week.

What an extraordinary year this is turning out to be.  I am completely blown away by the enthusiasm and generosity of spirit that this has generated in our community.  We have four elementary teams from the Cleveland Heights-University Heights district, plus Roxboro Middle School and two teams at Heights High, in addition to four elementary teams from Shaker, one from Lakewood and another 24-member strong team from Gesu School in University Heights.  Imagine what those school hallways will look like on Monday as those brave children walk proudly to their classes.

Oh, and have I mentioned the money we’ve raised? My initial goal was $60,000, but we are now over $70,000 and I think I need to up our current goal of $75,000 yet again. We have blown past every expectation I’ve had for what this year could become. More people, more schools, more money. I am so so thrilled (and a little nervous about how the whole thing will roll out on Sunday), but mostly I am moved.

I am moved by the number of young children stepping forward to stand in solidarity with those in treatment. I am moved by the number of girls and women (19 in all!) who are loudly proclaiming that how they look does not define how beautiful they are.  I am moved by the number of teachers sitting side by side with their students as live out this lesson in generosity. I am moved by the mothers and fathers and sister and brothers and friends of survivors and those currently in the fight who are saying, “You don’t have to go this alone. I am right here with you all the way.” I am moved and deeply saddened as I read through the donations on my participants’ pages and see how many people give “in memory” of someone.

We have lost too many people already. All of us have: parents and grandparents, siblings, friends and spouses, and — saddest of all — children. It doesn’t have to be this way. We can do better. The grants that St Baldrick’s awards to doctors and researchers truly do better; they are making a difference. And so are all of you, by shaving, by cutting, by volunteering, by raising money and by giving money. We are doing better.

www.stbaldricks.org/events/clevelandheights

I just realized that we are awfully close to a pretty significant milestone. In 2012, my St Baldrick’s event raised $37,271. And in 2013, it raised $45,030. So far this year, we’ve raised $18,168. Which, for my math-challenged friends, means that we have have raised $99,469 so far. And are a mere $531 away from a grand total of $100,000.

So, what are you waiting for? Get over there and donate!

St. Baldrick’s is less than one month away and we are well on our way to the most successful year yet. As of this moment, there are 84 people signed up and nearly $17,000 raised.  This is way ahead of where we’ve been in the past, so I am super excited, especially since the vast majority of fundraising tends to happen in the final week.

I feel like the movement I’ve been hoping to start in our community is really and truly happening.  We have teams of kids from four elementary schools in CH-UH and four in Shaker plus a Gesu Team, a Rox Middle team, and several from Heights High. We also have tons of girls, not just cutting and donating their hair, but many actually shaving, including four Heights High girls (the Bald Babes) and 4th graders from both RoxEl and Fairfax and my sweet little friend Sara Schubert, a Fairfax second grader. These girls display a sense of self-confidence and self-awareness that is most impressive to me.  I’ve spoken with several of them about their decision, trying to make sure that they understand the impact of what they’re doing (as well as the dreadfully slow growing-out period they’ll have to endure!). They’ve all responded to me with such maturity and careful thought, that I am sort of blown away. We hear a lot in today’s society about how girls are bombarded with princess images and made to believe that their looks are of singular importance in their lives. And yet these girls have stated their goals with such simple clarity, as though physical appearance were far down on their list of defining characteristics: “I know I may look funny, but I’m doing to for something good so that’s okay.” Or, “Well, I think I’ll look cool with a shaved head!” I am completely moved by their commitment and their gutsiness and can’t wait to celebrate them at our event.

Another thing that I’m very excited about for this year is that I’ve finally convinced Mark to shave at my event instead of downtown like he usually does.  This is his seventh year, which means he’ll get inducted into the Knights of the Bald Table, an exclusive St Baldrick’s club for long-term shavees (that’s written with a wink and a nudge since there are no real perks to such knighthood). But now I will have the honor of knighting him, which I believe will be highly motivating to the kids present who are in their second or third year of shaving. Braedan will be next in that regard and is already eagerly awaiting his own knighthood in two years.

All in all, I think this event is extremely empowering for young people, as it gives them an opportunity to truly make a difference in their world. They are giving away a literal piece of themselves on behalf of others, and while it’s certainly a fun and cool thing to participate in with their friends, it is also a meaningful and often very powerful experience. I am so proud to be able to bring them this chance to change the course of someone’s life, as they raise money to save the next kid diagnosed, someone they don’t and will likely never know.  We have a seventh grader from Rox Middle who’s currently in treatment for leukemia and his mother said he was initially very hesitant about being honored by this event, as he’s usually the one raising money or doing good for others. I told her to make sure he knows that his participation in this event is for others. Unless he remains in treatment for many many years (which I sincerely hope he doesn’t), the money that is raised today in his name and in his honor will be used for treatments for some child diagnosed well into the future. Likewise for Austin, who is always a bit overwhelmed (and even surprised) by the number of kids who say they’re doing this for him, while Austin will never benefit from the new cancer research that gets funded by St Baldrick’s. At least, I hope he won’t since I hope he never needs treatment for cancer again. If we wanted to do something truly for him, we’d raise money for kidney research! But this isn’t about us, this is about the families who come next, the families that don’t yet know their world will be rocked by childhood cancer. This is to ease the path of the next child and the next mother and the next brother who have to bear this terrible burden.

This is why we do what we do. This is why people shave. And this is why we come to you year after year asking for your financial support. I will keep coming back to you because you also have the chance and the power to change the course of someone’s life. You too can sign up to shave your head, by linking to our event page here. Or you can make a donation on the heads of any of these brave men, women and children. Austin is here, Braedan here and Mark here.

On behalf of my extremely lucky family and on behalf of all those who don’t yet know how unlucky they may be, we thank you.

My, what a difference four years can make. Last night was the fabulous Fairfax Cabaret, an every other year talent show that takes place on the high school stage. There’s a full stage crew, spotlights, headset microphones and all the accoutrements of a professional production. And it is so much fun, with everything from piano and violin solos to groups of girls singing and swaying to Beyonce. It is, at its essence, classic Cleveland Heights, capturing all that we love about our school and our district.

Because it’s only every other year (just too much darn work for the PTA to do each year), we’ve only been to two prior to this one. And the first, held in January 2010, was quite a different experience for us. Braedan was in kindergarten, Austin was in treatment, and I was understandably absent from all volunteer activities at school. On this rare occasion, we left a severely immuno-compromised Austin home with a sitter so Mark and I could take Braedan to the big event. It was the end of a horrible week, in which Austin’s mediport had failed during our week of in-patient chemo and he’d had a surprise mediport-repair surgery (“Surprise!”) scheduled mere minutes after he consumed two grapes for breakfast (two grapes!), rendering him unable to be anesthesized for a full and excruciating eight hours. That particular surgery, which was supposed to be “quick” and after which we expected to go home, was instead long and unsuccessful and left Little A with a PICC line instead of a mediport and left the two of us in the hospital for yet another night. We were on edge, exhausted and beat down, by the time we arrived at the high school for the next night’s festivities. I don’t remember much about that particular show, aside from multiple tear-filled conversations with people who innocently asked me how Austin was doing.

But all of this is beside the point, or maybe it is exactly the point, because last night, four short (and very, very long) years later, Austin was up on stage doing this. He’s the first one to somersault toward stage left (your right) and is in the far right of your screen for most of the performance (or the front of the right line of dancers). Click the HD button in the bottom of the screen to get a clearer version.

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And of course, we cannot let this review of the night go by without highlighting the brave and confident and funny and super cool Braedan, in his Cabaret jammies:

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And now I can confidently look ahead to Cabaret 2016 and Cabaret 2018 and all the years after that.

Time to move on to the next big thing . . . St. Baldrick’s!

For those of you new to my blog (or for anyone who needs a refresher course in just how awesome people can be), check out these old posts to learn about the incredible St. Baldrick’s Foundation and the even more incredible men, women and children who shave their heads each year to raise money for pediatric cancer research. These are last year’s highlights: The I’m-Actually-Doing-This! Moment, “Great Things,” and Pride. And these are from 2012, the first year we held our own head-shaving event in Cleveland Heights: Noble, Heroes, Thank You, The Petri Dish, and Most of all.

I know, it’s only December (only December?!) but registration opened early this year so our 2014 event is live online and ready for shavees.  We’re booked at the Cleveland Heights Community Center for Sunday, March 16 from 1 to 4pm.  I might make it longer if we have too many shavees (a problem I’m willing to handle!) or perhaps add additional barbers. Whenever you’re ready, get on there and sign up your kids. . . or yourself.  We will again be cutting and donating the hair of girls and women who have at least eight inches of not-color-treated hair to sacrifice (pas moi). That raised an extra $1,500 last year. And I’m really hoping to have teams from more and more schools this year. I know we’ll have a strong Team Fairfax, as well as one from Roxboro and hopefully Heights High and Gesu.  I think Canterbury School will represent this year and maybe we can get Boulevard and Noble in on the action too (hint, hint). Shaker is ready to revive old rivalries as I expect serious teams from both Fernway and Onaway (and if you’re a member of tiger Nation, that should really get you psyched up to shave). There are a couple other exciting additions to our usual crowd of shavees, but I’ll reveal those a bit later.

Leading up to our event in the past, I’ve visited schools during the day and spoken directly to kids in their classes about childhood cancer, St. Baldrick’s and what they can do to get involved. This gets the kids plenty excited, but (being kids) they also tend to gloss over some of the important details and I inevitably get phone calls from confused parents, saying, “Uuuummm, hello? I was told to call you. My son says he wants to shave his head and I’m, like, okay with that, but I have no idea what for….” So this year, I think I should cut out the middle man/middle child and speak directly to the parents. If you have an interested group or even just a potentially interested group at your school, contact me and we’ll try to plan for me to attend a January or early February PTA meeting.

I’ve decided to go big and bold this year and raise our event goal to $60,000. The first year we made $37, 271 and last year $45,030, but I’ve had enough of this slow inching upward and am confident that this is our year. Heck, I think we could make $75,000 if we really got enough kids involved, but I don’t want to stress myself out trying to reach that goal. Each of the past two years, I’ve felt a surging panic in the weeks prior to the event, certain that everyone’s forgotten us, that they’re “over” childhood cancer and there’s no way we’ll reach our stated goal. And then the last week arrives and, with it, at least one thousand dollars in donations per day. We surpassed our goals in both 2012 and ’13, so I don’t see why we won’t carry on that tradition in 2014.

St. Baldrick’s is a fun and playful celebration, a beautiful way for people, young and old, to feel the power of making a difference. We laugh and spray our heads green and eat shamrock cookies. But it is also very serious work. There are thirty-seven children who will be diagnosed with cancer today. One fifth of them will not survive. Another two-thirds will live with lifelong health complications as a result of their treatment. This is not okay. We can change things. You can change things. Right here, right now.

Last Friday afternoon, following our long day of doctors’ appointments, I posted a no-explanations-needed Facebook status that simply said, “Three-and-a-half years.” I know it didn’t need any explanation because I immediately got numerous likes and congratulatory comments.

This is all wonderful and we are pretty happy with the fact that Austin is indeed three-and-a-half years cancer-free, but of course, there are many many explanations needed. Because nothing in the cancer world is ever that cut and dry.

First of all, his heart, one of several oh-so-complicated organs for my sweet Austin. You may remember that this entire cancer journey started six-plus years ago with a visit to a pediatric cardiologist to look at a small VSD that had been found at his nine-month Well Visit. That VSD (a tiny and common hole in the wall of one of the chambers of the heart) still exists but poses no threat or consequence to his health at all. He has, however, had a history of enlargement of various parts of the heart, most notably his left ventricle. The measurements (as determined by ECHO and EKG) seem to fall in and out of the “normal range” depending on his overall size and age, and have been considered normal for some time now. But this past Friday, the dilation of that ventricle was larger than what doctors call normal. And there was another portion of the heart that was fused together. I know this sounds like a lot of mumbo-jumbo (to me too, especially when the report says things like, “Possible partial fusion of the right non-coronary commissure”), but the most important finding is that his heart is functioning perfectly. There is absolutely nothing wrong with the way it works, despite the fact that there are several things wrong with the way it looks.

The cardiologist wants to see us back in six months instead of the usual 12 as she wonders if the fact that last year’s heart exams were done at Rainbow and these at the Clinic may account for what appears to be growth. She also wants us to see genetics, which we haven’t done since Week One back in August 2007. At that point, in the days immediately following Austin’s diagnosis, he was tested for a particular chromosome that is associated with one (very dangerous) type of Wilms tumor. When that was ruled out, we never saw genetics again. The current cardiologist is confident that we don’t need to treat his heart in any way at this point in time, but is mindful that we may someday have to. She would like as much information as possible at that time, especially since his various abnormalities are not easily explained. Chronic high blood pressure can lead to an enlarged heart, but his blood pressure has been tightly controlled for years now. That coupled with renal failure, the late-effects of chemotherapy, and what others have referred to as “Austin’s unique anatomy” could make for an interesting future indeed.  So, off to genetics we’ll go, in the next month or two.

The other explanations needed regard his kidney (speaking of oh-so-complicated organs). His function is indeed slowly (very slowly) deteriorating. The changes are minor and not unexpected and not causing any one any great alarm. His lab results over the summer led to our adding two new drugs to his current regimen, so he now takes three in the morning and four at bedtime. He also suffers from chronic anemia, although you would certainly never know. Again, as with his heart, these are problems we see on paper that are not at all evident in the child himself. One of the docs on Friday asked if he could keep up with other kids his age. Ha! The real question is, can they keep up with him?

So anyway, his oncologist would like him to repeat labs in a month’s time, just to ensure that his counts remain steady. There is really nothing big to worry about at the moment, any more than we would worry on any regular day. We know his long-term health is going to be anything but straightforward, we know the risks of kidney failure, heart disease, secondary cancers. We know that this journey will never be over. But the news from Friday was ultimately good. Austin’s kidney is still working. His heart is pumping along. And there is no evidence of cancer in his body.

Like Austin himself, who finds joy in the most unlikely places, we take what we can get.

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