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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??
We are in our final days before the clippers start buzzing and the hair starts flying. And the ticker on our event page showing how much money we’ve raised keeps moving moving moving ever closer to our goal. Our 60 shavees and 5 hair donors are now at over $25,000 and seem to be raising more than $2000 a day!
But of course, that’s not fast enough and it’s not beyond me to make one final push on behalf of my children. They are each about 75% of the way towards their $2500 goals and with just a few extra donations could reclaim their first and second place fundraising spots. Braedan’s page can be found here and Austin’s here. I know there are many children you all know who are shaving so if you’d rather put that money down on someone else’s head, that’s perfectly fine — it all goes to the same place, after all. But, while I know it seems easier to just give a general donation to the event or to a specific team, the kids really do love to see their own dollars raised go up. So if you could just pick one, even one you may not know, especially if they’ve raised very little, and give in honor of Austin or your school or anybody you wish to acknowledge, that would make the kids feel so special.
There have been a few really sweet things that have come out of this experience, as always. The little brother a shavee handed over some carefully saved up bills to his mother and was concerned about how to split them up among all the kids he knows who are shaving. His mother assured him it was easy to divide that twenty (doesn’t look easy to a 6-year old, of course) and took the time to make small donations on the heads of about six or seven Fairfax kids. The kindergarten teacher of a preschool friend of Austin’s highlighted how this child’s sacrifice reflected the IB learner traits of being caring, risk-taking and principled. She sent this message home to parents and the following day, all the little students brought in handfuls of change and crumpled bills to donate.
There’s also a father-son shaving team engaged in a head-to-head (get it?) battle to see who will raise the most money. They are both well over $1,500 and a mere $25 separates them as of this posting. If the father wins, the son has to clean his room. And if the son wins, he gets to write on his dad’s head with a permanent marker. I don’t know about you, but room cleaning seems mighty boring so I’m rooting for the son.
And tomorrow, I will go to Fernway School in Shaker to speak to their kindergarten and first grade classes about cancer and St. Baldrick’s in honor of that school’s shaving team. Then in the afternoon, I get to speak with the three kindergarten classes at Fairfax, which is really something because not only is Austin allowing me to do such a thing, he actually asked for it! And on Saturday morning, the preschool/day care center of my nephews Van and Hill is hosting a pancake breakfast to raise funds for St Baldrick’s. So, yet again, we are moved and touched by the broad community support we’ve received so far.
And now, there are just four days left. If you’ve been planning to make a donation, NOW would be a fabulous time to do it. And if you want to bake treats for the bake sale, just let me know. I’m requesting St Patrick’s themed goodies, but anything will do.
Of course, you are all welcome to come and cheer on our shavees on Sunday afternoon. We’ll be at the Cleveland Heights Community Center from 1 to 4 pm and I guarantee you’ll have fun and be plenty inspired. Heck, you might even decide to hop in the barber’s chair yourself!
At the end of last week, I was starting to get worried about our head-shaving event this year, feeling like we didn’t have enough shavees, no one was interested, it was a one-time wonder, yada yada yada. Then I had thirteen new registrations on Friday and Saturday alone. We are now up to 47 children and adults shaving and 3 girls cutting and donating, which is a few more than we had at this point last year. It’s still not too late (I did order a few extra participant t-shirts in an optimistic moment), but it’s almost too late so if you’re still signing up, do it today.
So I’m feeling pretty good about our number of people, but the number of dollars raised leaves a little to be desired. Actually, it leaves about twenty thousand to be desired! Last year, not knowing what to expect, I aimed low, with an initial event goal of $15,000. I quickly upped that to $18K, then $20, eventually $30 and finally settled on $35,000, which we surpassed. This year, I thought I’d save myself the hassle of editing the online goal and started high: $45,000. Well, we are currently at just over $16,000 and Monday I lowered the total to $35,000. Boo.
So, now I’m gonna lay on the pressure. This is serious business. This is the business of saving lives. Every parent of a child with cancer already knows the ugly truth about how other organizations use images and stories of children to do their fund raising, but give pathetically little to childhood cancer research or treatment. The esteemed American Cancer Society gave a mere 3.7% of its nearly 2 BILLION dollar budget to pediatric cancers in 2011. Now, I get that cancer affects a great many more adults than children and I, of course, support well-funded and rigorous research into all adult cancers. But I will refuse to give the ACS a single dollar until they stop prostituting photos of sick children, all in the name of opening donor wallets. That pisses me off. (Can you tell?)
St Baldrick’s is different. All they do, all they fund, is childhood cancer research. That is what they devote every second and every dollar to. And it’s research that is truly making a difference. We have St Baldrick’s fellows right here at Rainbow, making discoveries and treating kids every day. I’ve given you the stats before: how many kids are diagnosed, how many survive, how many don’t. But think about this for a moment: the treatments that kids receive today, Austin included, are developed with adults in mind. They’re intended for use on adult bodies, which are distinct and unique from the rapidly developing bodies of young people. The chemo agents Austin had pumped into his bloodstream for all those months were never meant to be used in a one-year-old. Or a three-year-old. So, by the time they hit age 30 or 40, 73% of the “lucky ones” will have a chronic health problem as a result of their treatment. And Austin will no doubt be one of the 42% of survivors who will be living with a severe or life-threatening condition. In fact, he already is.
The very medicines we give our children to keep them alive will most likely kill them.
That’s not okay. That’s not just an unfortunate consequence, the price we have to pay for keeping our babies alive. It’s unacceptable. And St. Baldrick’s knows it. And they are working tirelessly to change it.
And guess what? You’re not just an idle bystander, listening helplessly to bad news. You can actually do something. You can save a life. And be a hero. And all you have to do is shell out a few bucks. It doesn’t even have to be on the heads of my children; they’ve raised more than $1,600 apiece. You can give to some of the lovely and brave children who’ve raised just $15. Or to the female high school senior who’s shaving her head, and who I’m really hoping will hit the thousand dollar mark. Or to the young mom who’s so terrified that her children may someday have cancer that she figured she better do something about it right now. And so she’s doing something about it, right now.
And you can too.
One thing I forgot to mention in my last St Baldrick’s post is that I am indeed adding a Bobs for Baldrick’s station to this year’s event. Any girls (or boys) or moms (or dads) who wish to cut and donate their hair for wigs can sign up as a “volunteer” on the St. Baldrick’s site (our event page is here) and then raise money much as the other shavees do. Instead of going under the buzzer, these participants will get a beautiful haircut by either Shawn Paul or Laura Griffith of the Shawn Paul Salon, if donating at least 8 inches of hair. There are four organizations to donate the hair to: 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. And I just found another group, Wigs 4 Kids in conjunction with the Children’s Leukemia Foundation that will take ten inches of hair. Either way, I’ll have envelopes and forms ready to go for all three and people can choose the day of depending on how long their hair is and how much they’re willing to cut off.
Please consider this option if your hair is long enough but you’re not willing to shave it all off. You’d still be making an enormous statement, helping children with cancer in a tangible way and raising additional research funds in the process. Let me know if you want more information about how this will all work; there are lots of little details like that hair can’t be colored and must be clean and dry, etc etc.
And again, if you’re planning to shave, please register today. I hate to be nagging and pleading, but I need to send in my t-shirt and event supply order by this Friday and I can name twenty kids off the top of my head who’ve told me they’re shaving but aren’t yet registered. It only takes a few minutes and you’ll help put my mind at ease! But don’t do it for me. Do it for Jordan. Do it for Justin, who really really needs us. Do it for the nearly 400,000 children in the US battling cancer right now. You won’t regret it.
JORDAN’S STORY: When he was 16, Jordan was diagnosed with a very aggressive soft-tissue sarcoma. The doctor said, “We have your diagnosis. It’s alveolar rhabdomyosarcoma, and you will most likely not survive.” Jordan responded with strength and a sense of calm. He was the very definition of grace, courage and strength. After 23 months of treatment, Jordan passed away five days before his 18th birthday.
During treatment, Jordan found inspiration in the words of Atticus Finch in To Kill a Mockingbird: Courage is when … “you’re licked before you begin but you begin anyway and you see it through no matter what.” Jordan’s ability to accept his fate, yet continue to live his life with passion, hope, and unrestrained joy was astounding and courageous.
Read more of Jordan’s story.
Jordan is one of five St. Baldrick’s Foundation Ambassadors, representing the thousands of kids touched by cancer each year. Learn about how you can get involved to help children with cancer, just like Jordan.
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.
