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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:
(Mark’s sacrifice wasn’t quite so big….)
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.
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 . . .
Pride gets a bad rap. You know, being one of the seven deadly sins and all. I don’t really get it (I’m not anti-lust either, but we don’t need to go there). I mean, I see how pride can be a negative, if you’re excessively proud without good reason, if you’re proud of the wrong things (your looks, your wealth, your power). But I also see pride as an appropriate reward for doing what’s right and as a motivator to do what’s right again.
Those kids — and adults — who shaved their heads last week were proud of themselves. Deservedly so. They should feel pride; they earned it. Their pride will be one of the reasons they come back and do this again next year. Or it will spur them on to take other forms of positive action in the world.
I felt proud when Braedan told me I “do great things.” It didn’t make me want to sit back and rest on my laurels; it made me want to do more great things, if for no other reason than to show my children the impact they can have on the world.
Pride is beautiful too; especially when it shines innocently on the face of a child who has just discovered an empowered sense of self or on a parent who has watched their baby do something big and wonderful. Just look at these:
Here’s another boy who should be mighty proud of himself. Spencer signed up a mere ten days before the event and managed to raise $1,180 without a single donation over $100. Fifty-three different people contributed on his head. Fifty-three! What an incredible show of support that is. (And what a lot of Thank You notes he has to write!)
And then there’s this guy, probably the proudest of the bunch. And with good reason. In the four years that Braedan has shaved his head in solidarity with his brother, he has raised an incredibly impressive $13,153 for the St Baldrick’s Foundation. Ponder that for a moment. $13,153, . . . from a child. No wonder he looks like this:
Even the smallest among us can feel pride. One of my favorite St. Baldrick’s moments this year happened two days after the event, when I received a surprising text from my sister-in-law. My nephew Hill, who was still two on Sunday but has since turned three, announced at the dinner table Tuesday night that he wanted to shave his head too, like his big brother and cousins. Up went the family, straight to the bathroom for the clippers, and what emerged is our youngest-ever (and plenty proud) shavee:
And here’s another thing to be proud of. For every single person who shaved their head or every single person who donated a few bucks, this is for you:
And moments like this:
So hold you heads high and be proud. You deserve it.
I should start by saying we have now raised $43,291, including the checks I mailed today (which won’t likely show up on individual shavee pages for a few weeks). Which means that we are a mere $1,709 away from my original and very ambitious $45,000 goal. Which also means that if every one of the 75 shavees raised just $23 more, we would reach that goal. Twenty-three dollars! Let’s do this, people.
More pictures and more stories: We had a lot of school teams this year, which is exactly what I want this event to become and what I hope drives our numbers up even higher in the future. Fernway School in Shaker, home to two preschool buddies of Braedan and Austin, fielded a team of ten kids and one dad and is poised to grow by leaps and bounds next year.
There were also five kindergarten students from Gesu who shaved, many of them for the second time.
And then there was the Heights High team (of course, one of my favorites), the Buzz Buddies. This one was spearheaded by a girl, a 17-year-old senior who shaved her head clean bald. I have to admit, these are the ones that get me the most, because it’s something I would never have been brave enough to do as a 17-year-old girl. I was gusty (still am), but not that gutsy (still aren’t). So I watched in awe as Katy raised significant sums of money and rounded up five of her (male) friends to join her and then hopped into that chair without a second thought.
And of course, there was a Team Roxboro, another personal favorite. This one was captained by our sweet friend Charlie who, as a first grader, has raised more than $2000 in his two years shaving, and was joined this year by his uncle.
And there was the hard-to-beat Team Fairfax, with fourteen students and one mom (who cut and donated). I think it’s safe to say that it’s cooler to be bald in that building this week than not. And I can pretty much guarantee that their academic performance has improved now that they can see the board. Just look at this shaggy-haired bunch of ragamuffins:
I have still more to post tomorrow, but in the meantime, check out this photo gallery.
I had my own hero moment on Sunday afternoon, an all-this-work-over-the-past-few-months-planning-organizing-scheduling-emailing-promoting-reminding-pleading-prodding-begging-nagging has been worth it kind of moment, when we got into the car to go home and Braedan said, “Thanks, mom. You do great things.”
Thank you, thank you, thank you. To everyone. To all of the hundreds of people who donated money on the heads of our shavees. To our tireless barbers from Quintana’s and Shawn Paul for putting everyone at ease and working without complaint in such good spirits for so many hours. To Mike Kenney who entertained the kids with juggling and balloon art. To all of my friends (including both my mom and my honey) who volunteered their afternoon to check people in, collect cash and checks (tougher than it sounds), sell baked goods or take more than 1,500 pictures (Dallas was a busy woman!). Thank you to everyone (I have no idea who) who baked those yummy looking treats, which brought in an additional $220. And of course, the biggest and most enthusiastic THANK YOU to every man, woman and child who shaved their head or cut and donated their hair.
As of this moment in time, we have raised $43,101.71. Yup, that’s right: seventy-one cents. I wasn’t kidding when I said every penny counts. And the total continues to rise online. We may reach my original $45,000 goal after all.
That is really something. Really really something to be proud of, for all involved, certainly not just me. And more than anything, everyone should be proud of the very brave souls who climbed into those barber chairs and allowed strangers to shave their heads completely bald. It is not a small thing to do. It is a big thing, even for the men with little hair. Even for the littlest kids who don’t care what they look like. Especially for the women and girls who do. It is a serious and powerful statement to make to the children currently battling cancer. And to all those who love them.
I’m only gonna mange to tell a couple of the stories tonight, so you’ll all have to check back tomorrow. But let’s start with the father-son team who went head-to-head in a heated battle to see who could raise more money. The younger won (ah, youth always wins, doesn’t it?), by about $80, but together they raised more than $6000. Now that’s a competition we can all support.
We don’t actually know them all that well, but when asked why they shave, the father simply said, “We do this for Austin.”
And then there was Erica, who emailed me out of the blue a few months ago asking if women could join our event too. “Sure,” I told her, knowing women generate lots of buzz (and donations!). She wasn’t the first or only woman to sign up, but I could tell from the beginning that she was serious about this. She was driven, as I mentioned in an earlier post, by an intense fear that one of her young children might one day have cancer. And like a true hero, not one spurred into action by disaster that’s already struck, she saw this as an opportunity to do something before she was ever impacted. To do something right now. And boy, did she ever. Erica raised more than $3000, taking the coveted first place fundraising spot for our event. And she did it with courage and grace and beauty.
Isn’t that such a great shot?
There were so many more fabulous parts to the day but a picture is worth a thousand words and I have a few hundred pictures, so I’m going to add some more here and then post again tomorrow, including about a mother-daughter team and all the CHUH kids. I’m still working on a public photo gallery on Flickr, but it’s not quite ready. For now, I’m inspired by this image that was posted on the St Baldrick’s Facebook page last week:
And here are our very own, “Oh my god, I’m actually doing this!” photos:
And with those slightly stunned, pretty excited and damn proud faces, I leave you. But only until tomorrow, I promise.
In light of the extraordinary fundraising prowess of our more than 70 shavees, I’ve decided to raise our event goal from $35,000 to $40,000. We are currently at just over $33K and the money keeps rolling in. I’m convinced that with everyone’s last minute push (plea) for donations coupled with the cash and checks people will bring with them tomorrow and the eventual matching gifts from the workplaces of our donors, we can do this.
To give you a sense of just how successful people are being, my two boys have each raised more than $2,000 and they are only in 4th and 5th place for our event. That means that five people have raised more than $2,000! Another five have raised more than $1,000 and there are a few more pushing the door on the $1,000 mark.
Yesterday, the 14 students from Fairfax School displayed their St Baldrick’s pride with green hair (which was sort of funny considering at least half of them were participating in the school spelling bee!).
Thank you to everyone for your generosity supporting my Braedan and Austin and all their friends and classmates, year after year, as they shave their heads. We will not stop doing this. And I am so grateful that you continue to stand alongside us as we do.
And now, know anyone who could use a haircut??
Twenty days from right now, I will be surrounded by bald children. And I hope that you will be too.
Our St. Baldrick’s head-shaving event for kids and teens (and adults) is fast approaching, now less than three weeks away. We currently have 31 registered shavees, which isn’t awful but I know there are many many more out there who’ve said they plan to sign up. Now is the time, people! If you need to be re-inspired, go back and look at these posts from last year’s event: Noble, which talks about the bravery of the Fairfax students: Heroes, short and sweet, but gets me every time (and I wrote the darn post); Thank You filled with pictures from our event; and The Petri Dish, with more pictures and the very important message that every single dollar raised makes a difference to children living with cancer and their families. I also urge you to spend three minutes and watch this video put together by St Baldrick’s.
And then, right when you’re feeling sufficiently emotional, visit our event site to sign up or donate. Braedan’s page can be found here, and I must tell you that this boy loves his hair. He wills it to grow the second he’s done shaving and isn’t satisfied until about six months later, when it starts to skim his eyebrows again. He really loves it long. So much so that I told him he didn’t need to shave this year if he didn’t want to. But oh no, he said then his friends would be less likely to shave and he wants everyone to do it so he will too. He is now motivated by the prospect of earning his knighthood by the time he’s in 6th grade, as shavees who’ve been involved for seven years are welcomed ceremoniously into the Knights of the Bald Table.
And then there’s Austin, who cares little about how he looks. His message is linked here and copied below because it’s a good one (what a little writer that 6-year old is, huh??):
Numbers, numbers, numbers . . . here are my numbers: I’m 6 years old; I’ve had cancer twice; this is my third year as a St. Baldrick’s shavee; I’ve had six abdominal surgeries, 13 months of chemo and 12 rounds of radiation; I have half of one kidney; I am a two-time cancer survivor and I am two-and-a-half years CANCER-FREE.
More numbers: Last year, I was one of 5 St. Baldrick’s Ambassador Kids and helped the organization raise more than $33 million. I was joined at the Cleveland Heights head-shaving event by 48 other shavees, including 9 kids from my preschool and 11 from what is now my elementary school. Altogether, we raised over $38,000.
This year, I ask you to consider these numbers: 38 children are diagnosed with cancer every day, 46 if you count teens and young adults. One in five of them won’t survive.
So join me. Shave your head, donate your time, contribute some money. Let’s solve this.
As I said in my email appeal for donations, I sometimes feel selfish for asking so often for others to support our causes. But then I remember that this is not about us, this is not about Austin, as he will hopefully never need to benefit from the medical advances that St Baldrick’s funds today. This is about who comes next. This is for the kid who’s diagnosed today and the one who’s diagnosed tomorrow. This is for their siblings. And this is for their parents.
So join us. Shave your head, donate your time, contribute some money. Let’s solve this.
Ready for these? Oh, they’re good ones alright . . .
From a restaurant in New Jersey:
And another in Hawaii:
A friend of my brother’s saw this one in a bar in Denver:
A high school in Chicago:
A different friend in Chicago was obviously in the very same building:
At a Starbucks in Bowling Green:
An ice cream shop in New Jersey:
In Traverse City, Michigan:
This one is just from good ol’ Cleveland, but it was cool because this church had another even bigger one posted out on the road that surprised me one day as I went running by (with no camera):
I had one that was sent to me from New Orleans that I can’t find any more. And, of course, many people told me they saw them out and about but have no photographic proof (slackers). Thank you for keeping your eye out for us over these past twelve months. It has been such an incredible honor to be the face for so many of this year’s events, especially considering the fact that St. Baldrick’s raised more than $33 million in 2012, a $5M increase over their previous record-breaking 2011. A new poster child will be revealed in January and my boys’ sweet faces will be relegated to some dusty old storage boxes. I am going to ask St. Baldrick’s to send me any extra posters they have so I can use them again in 2013.
So, speaking of St. Baldrick’s 2013, our event page is up and running, with four registered shavees: Braedan and Austin as co-captains of Team Fairfax and two brave women I don’t yet know. It’s not too early for the rest of you to get started: register as a shavee, form a team of kids from your school, club or sports team, and start spreading the word and raising money. I am setting up a special Bobs for Baldrick’s station for women and girls who want to cut and donate their hair. I’ve been advised that anyone doing that should register as a Volunteer and not a Shavee but then use the message on your personal page to describe what you’re doing to friends, family and potential donors. Let me know if you want more information about that option. I believe the barbers from Quintana’s will be shaving heads and Laura and Shawn Paul from Shawn Paul Salon will be doing the haircuts (so you can trust you’ll get a good one!)
And of course, I’ll need Registrars and Treasures too, the more the merrier, so hit me up if you’re interested. I’m really excited to do this again and am hopeful that we can surpass last year’s fundraising total of $36,146 by at least ten thousand. As importantly, I think we can surpass last year’s shavee total of 49 by about twenty. Join us . . . and be a hero for kids with cancer.
You never quite know when inspiration will hit you. For me, it came last weekend as I scrolled through Facebook on my phone while waiting for my shower to heat up (gotta stay connected, you know). A friend and fellow Fairfax mother posted a photo of her 5th grade daughter chopping off her long blond locks to donate to be made into wigs. This girl happened to be in Ms. Glasier’s 4th grade class last year when she shaved her head for St. Baldrick’s and I have no doubt that her heroic act was inspired at least in part by the heroic act of her teacher.
Which got me thinking . . . I certainly don’t want to discourage anyone who might be willing to shave their head this year. Nor do I wish to discount the significance of a truly bald head, which is, indeed, significant. But, I also know there are a lot of girls and young women whose friends and brothers shave and who come to the event and wish there was a way for them to get involved, but who just aren’t ready to go all the way. I get that. I too have toyed with the idea of shaving — every March 18, I am convinced I’ll do it the next year, but as those 364 days dwindle away, so too does my willingness to shave.
So, I think I’m going to set up a station at our March 10 event for girls to sign up for major haircuts. They can register online at St . Baldrick’s just like the boys do, but instead of saying they’re shavees, they’d be listed as volunteers. Then on their homepage, they could describe what they’re doing, which organization they’ll donate their hair to and request contributions from their friends and families for St. Baldrick’s. Everyone benefits: St. Baldrick’s raises more necessary funds for research into childhood cancers, people who need free wigs, get them and the girls themselves feel empowered and engaged.
First, I’ll need to make sure this is okay with St. Baldrick’s, because I don’t want to dilute the impact of those who are actually going bald. I don’t really think it would and I certainly encourage anyone who might be even considering the full shave to really seriously consider it. But we’re talking about people who most likely would remain on the sidelines if this option wasn’t available. Then I need to check in with my barbers to make sure one or two can dedicate a bit more time to actually giving real haircuts as opposed to just the quick buzz. And then, perhaps most importantly, we’d have to figure out who to donate hair to.
This is a trickier issue than I at first thought. I’ve done a bit of research and am surprised at what I found. Locks of Love, the best known of these organizations, will accept 10 inches of hair, which is more realistic than Wigs for Kids, which requires 12 inches. However (and this is a pretty big however), Locks of Love only makes wigs for children, teens and young adults with long term hair loss. Now, that hair loss could be due to radiation for brain tumors, but is mostly caused by alopecia or scalp burns. A worthy cause, no doubt, but this does not include the kids with cancer that St. Baldrick’s is dedicated to keeping alive. Wigs for Kids does make wigs for children with temporary hair loss due to chemotherapy (but again, they need 12 inches). There’s another group, Pantene Beautiful Lengths, run by the shampoo company, that accepts just 8 inches of hair to make wigs for cancer patients, but from what I gather it’s mostly for grown women.
There’s nothing wrong with any of those efforts, of course. I’m all for women getting wigs and, obviously, those with permanent hair loss would be more likely to want wigs than those with temporary hair loss. But I do want whatever I offer to be appropriately aligned with childhood cancer patients. Hmmmm, thoughts welcome. Let me know if your daughters (or you) might consider participating in this way. And then, let me know if you have an opinion or preference regarding which organization to select. Actually, this is silly. Each individual donor could choose their own organization depending in large part of how much hair they have to give. We can have the envelopes and donation forms from each group at our event and each girl could decide in that moment. And the money they’d be raising ahead of time would be for St. Baldrick’s so it wouldn’t really matter where the hair went.
Alright, that was easy! Our event is now live online and although I haven’t personalized our page yet, it’s not too early to register. I know a lot of the kids who shaved last year generated interest among their friends and classmates, so I’m hoping this year that more of our local schools will form their own teams. Braedan and Austin will serve as co-captains of Team Fairfax . . . which I can tell you now is the team to beat!
The boys’ hair is growing back. They both have nice coverings of dark fuzz and a few of their friends are almost back to their regular pre-shave haircuts. By now, everyone should have moved safely beyond the stage of questioning looks and sympathetic glances.
I imagine that for some of the shavees from our event, especially those with blond hair and nearly invisible eyebrows and eyelashes, the experience of being bald, at least in that first week or so, was quite similar to the experience of a real cancer patient. My kids both have dark enough hair (and eyelashes to die for) that they don’t warrant anything beyond a quick double-take. But for some, I’m certain they got quite a bit more than that as they wound their way through the grocery store with mom.
It must have been an interesting experience for the mothers of those kids too — to be on the receiving end of those looks. I know a thing or two about that. It’s not necessarily offensive; I mean, people are naturally curious and often mean well when they cast those big sad eyes on a sick child and his mother. But I spent months dodging sympathetic glances, back in the spring of 2010. Most of these took place at the hospital, because that’s where we spent most of our time during those months and because that’s where it was most obvious why my child was bald. My reaction to people’s stares was dramatically different depending on whether Austin was awake or asleep.
When he was awake, which usually meant he was tearing through the hospital hallways, skipping over tiles on the floor or climbing the low wall in the cafeteria like a balance beam, he did not look sick. Well, he looked sick, but he did not seem sick. In those moments, I always felt a strange pride when people stared in wonder and confusion at this obviously cancer-stricken child who was nonetheless cartwheeling his way through University Hospitals. I would shrug and smile, as they gave me these looks that turned from sadness to bewilderment to pure delight.
But when he was sleeping, which he often was, slouched over in the stroller as I pushed him from one ridiculously long appointment to another, I got completely different looks. These were quieter looks that people tried to hide from me, sideways glances and quick nudges of the person they were walking next to. “Look,” they seemed to be whispering to their companions. “Look at that kid.” My reaction then was to stare straight ahead, shoulders high, chin jutted forward. “We’re fine,” I was silently announcing back (even when we weren’t). “Don’t feel sorry for me.”
But look at us now. No sympathetic glances for this kid.
I’ve finally uploaded all of Dallas’ pictures to a Kodak Gallery, found here. I have more to add from both Mark’s and my dad’s cameras. The cool thing about these public galleries is that you can all add your photos to the one album and then we’ll have a huge array of images to look at and choose from to represent that very special day.
Also, I finally received a link to the piece on Fox News. There are actually two, one from last Sunday and another from this past Friday that has our event intermingled with the A.J. Rocco’s and U.S. events. (U.S., by the way, has passed us by, having raised a total of $46,365 with 65 heads shaved. Oh well, it was all in honor of Austin and it all goes to the best place. But … next year!). The clip of our event (the second one down) is sort of silly because the cameraman picked the worst possible moment to interview me, right between introducing people and while Breadan was shaving (which I completely missed). But I’m pretty sure I had done a fine job, explaining St. Baldrick’s and the value of raising money and awareness and so on, when he asked me how this all makes me feel. How does it make me feel? Well, you can see my jumbled response! I was trying to say something about Leah, because she had just finished shaving and the shock and awe and emotion of that moment was still fresh in my mind. But I got sidetracked and first mentioned Kristi and finally ended up looking over my shoulder to catch a quick glimpse of Braedan and whatever I said after that is laying on the cutting room floor.
Oh well, I guess they captured true emotion.
Speaking of true emotion, Saturday was another really special day. Just really … special. These past five years of being involved with St. Baldrick’s has made St Patrick’s Day into a pretty significant holiday for our family. And this year, with the boys being the national face of the head-shaving campaign, that significance has only grown.
We headed downtown into an extremely crowded and party-like atmosphere in the mid-afternoon. AJ Rocco’s was as crowded as ever, if not more so. We pushed out way through to the back where we gathered with family and friends and climbed onto a bench so we could watch the festivities from on high.
Finally, it was our turn and we pushed and shoved and squeezed our way to the stage in the corner. Mark and Kirk and Jay were all shaving together, with special permission granted to Braedan and Austin to help with Mark’s shearing. I love this photo below as the MC announced that it was us on the huge poster on the wall:
And then they began. Braedan, naturally, hopped up and grabbed those buzzers and happily started shaving Daddy. Austin, naturally, hung back in my arms until watching his big brother have all the fun made him jealous enough to brave the crowds and he too scooted into Daddy’s lap and took his turn. Once they got started, there was no stopping them.
I have moments, every once in a while, when the enormity of all we’ve been through hits me like a ton of bricks. All the years of fear and worry, of calling the hospital “home” and of waiting through eight and ten hour surgeries, of poking and sticking my poor boy’s battle-scarred body, of never knowing what fresh horror the next day might hold. And it came crashing down around me, right then as I felt so overwhelmingly relieved to watch my two healthy children shave their father’s head, so incredibly honored to have them represent this very special event the whole world over.
Now, some of you may say, “That’s great, let the feelings come, don’t hold back.” But really, standing in a crowded bar on a holiday in the middle of downtown Cleveland is neither the time nor the place to really break down. So I shed a few tears and choked the rest back and took a lot of pictures and cheered them on, so full of pride and amazement at how we’d come through, so grateful for all the love and support we felt and still feel around us.
And then it was over. They were done and stood up to show off their nicely shaped domes. Then it was more beers and sending the kids home with their aunt and take-out so we could spend the rest of the evening celebrating.
There was one other moment worth mentioning though. As you might imagine, bringing your kids into any downtown bar on St Patrick’s Day in Cleveland is risky business. And while A.J.Rocco’s has given our city a huge gift by hosting this event over the past ten years, it is, nonetheless overcrowded with post-Parade partiers. Most of the people were there specifically for St. Baldrick’s, but some had undoubtedly wandered in off the streets. And while mine were not the only kids there, they were among just a handful. So, as we were waiting our turn, tucked away in a corner, this one woman walked by a few times and shot some very dirty looks in our direction. Later, as Mark was watching one of our nurses shave her head, with Austin perched on his shoulders, this woman leaned in to say, “He shouldn’t be here.”
Oooh, man, I wish she’d said it to me because I’ve been fantasizing about what I’d have said back ever since Mark told me. But my husband, Mr Cool and Collected, just calmly replied, “You’re gonna regret saying that in about ten minutes.” She clearly had no idea what was going on there that day.
Because of every one of the hundreds of people squashed into that narrow little bar, Austin deserved to be there most of all.
