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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.
I’m still here . . . just have been ridiculously busy, mostly with school-related stuff. Too many balls in the air right now, that’s for sure. But anyway, looking ahead to my busy winter season, I invite you all to start thinking about that other month in which childhood cancer is pushed to the forefront of the public conscience . . . March.
I will again be hosting a St. Baldrick’s head-shaving event for young people in our community on Sunday, March 10. I welcome the participation of any and all of you and hope that those kids who shaved last year want to do so again and have inspired their friends and classmates to join them. I’d been hoping to convince the counselor at Fairfax to adopt St Baldrick’s as our school’s charity for the year. Unfortunately, I discovered that the entire district has committed yet again to the Pennies for Pasta fundraiser run by The Olive Garden.
Let me vent for a moment about this particular effort, promoted heavily to schools through the restaurant’s marketing team. The monies ultimately go to the Leukemia and Lymphoma Society, a worthy cause no doubt. But, despite some valiant searches through GuideStar and Charity Navigator, I can find no reports on exactly how much of the money goes there and how much stays with The Olive Garden. Maybe I’m being cynical and maybe they just hand all the donations over for the greater good, but the very name Pennies for Pasta bothers me. The idea is that students bring in their loose change (pennies) and the class who raises the most money wins a catered lunch by the restaurant (pasta). Of course, the prospect of sitting down with table clothes and real silverware in the classroom is exciting for kids and everyone likes a little motivation. But it also teaches kids that you only give when you get something in return.
One of the things I love about St Baldrick’s — and that I think proves meaningful to young and old alike — is that there are no prizes. Sure, you get a t-shirt and a button, but that’s not the same thing (and those serve to promote awareness not just of the organization but, more importantly, of childhood cancer). Instead, the children who participate in these events learn that no matter how young they are, they have the power to make a true difference. They can sacrifice in ways that (some of) the grown-ups around them are unwilling to do. That’s quite a powerful realization: I can change the world, I have impact. Not because I found some spare change in my couch cushions and won a prize, but because I gave something real, a piece of myself, and expected nothing in return.
Of course, the truth is that these kids get a lot in return and for good reason. They feel like they’re part of something important . . . because they are. They’re celebrated in their homes and schools and local media for their bravery . . . which they display in all its glory. They’re praised by their teachers and classmates and friends and families as heroes . . . because they are. No noodles necessary.
Childhood Cancer Awareness Month is quickly coming to a close and I feel as though I haven’t done my awareness-raising duties. So, here’s my please-come-walk-with-us-this-Saturday push, as published in The Heights Observer:
Krissy and Mark Gallagher, also of Cleveland Heights, are participating in the Walk for their five-year-old son Austin, a two-time survivor of kidney cancer. “Austin has lost his entire right kidney and half of his left to cancer,” explained Krissy. “He’s had 10 surgeries, 13 months of chemotherapy, 12 rounds of radiation, and has spent hundreds of nights in the hospital. Despite all that, he’s one of the lucky ones. Because he’s alive. Until we can say that for all children diagnosed with cancer, our work is not done.”
And that’s just it: Our work is not done.
Childhood cancer remains pitifully underfunded, with only 4% of dollars raised by the American Cancer Society going to research for pediatric and young adult cancers. That’s why our work isn’t done.
No new chemotherapy drugs have been developed specifically for childhood cancers in more than twenty years. That’s why our work isn’t done.
Austin’s cancer story, featured here in the first newsletter for the parent support group In It Together, is sadly not unique. But instead starts anew for nearly 40 families every single day. That’s why our work isn’t done.
Earlier in the month, following the fabulous Stand Up To Cancer telethon, there were many Facebook statuses that read, “I stand up for. . .” I commented on one, listing the names of eight children: Austin, Ariana, Ashley, Dylan, Olivia, Abby, Seamus and Emily. Afterwards, I sat back and read over my list and realized that only two of them, including my own Austin, were still alive. Two out of eight. That’s why our work isn’t done.
Please join us for the CureSearch Walk on Saturday, if you can. Stand with us. Walk with us. Because our work isn’t done.
So much for biking, it’s time for walking.
The CureSearch Walk for Children’s Cancer, to be exact. Many of you have walked with us for this event before, although it’s been almost a year and a half since we last had that pleasure because they moved the date from May to September to coincide with Childhood Cancer Awareness Month. This year’s Walk will be on Saturday, September 29 from 9 to 1 (it’s not truly that long, but the timing includes pre-registration, the walk itself and the ceremony afterwards). I know it’s right smack in the middle of fall soccer season for the elementary kids, but I do hope many of you will be able to join us, even if just for part of it. The last one was very powerful, described here, and it means so much to all of us to see Austin and Braedan’s friends walking along beside them (and hey, I’m not asking you to shave your heads or anything!).
All the details can be found here and the homepage for Team Austin is here. It’s only $10 to register and free for anyone under 16 (needless to say, though, a small donation is deeply appreciated). Of course, I concentrate my fundraising efforts on St. Baldrick’s (more on that shortly), so I’m not asking for big donations or major fundraising campaigns from any of you, but that sea of red is a beautiful sight. Walk with us, if you will.
St. Baldrick’s season may seem like it’s over, but they’re not done raising money for pediatric cancer research. And now instead of shaving heads, they’re climbing mountains.
In 2010, Patrick McCarrick launched a new initiative called Climb for 5, in which mountain climbers raise money by scaling the tallest peak on each continent in honor of the five St. Baldrick’s Ambassador Kids. So in September of this year, a group of seven climbers will head to Russia to climb Mt. Elbrus, Europe’s highest mountain at 18,500 feet. I spoke with Patrick on the phone last week and he compared mountain climbing to cancer treatment, something I’ve done before myself, here after my run up Mount Cadillac. Each leg of the climb will be dedicated to a different child and they’ll carry something special of Austin’s to represent him. Since he doesn’t have a lovey or any single object that perfectly captures his journey, he and I are going to make the most fabulous ever wishing star to send up the mountain. (I offered to send Austin himself but they turned me down….)
You can learn more about Climb for 5 here or here. And you can still donate, either to the climbers in honor of Austin or to our very event. This year’s shavees and events can collect money through the end of this month. So far, St. Baldrick’s has raised more than $30.4 million dollars, the most ever, $36,000 of which came from our event. I’m so honored to have been part of the most successful season yet.
Here’s a link to an article I wrote for the St. Baldrick’s website, which was posted today. They had originally asked me to write something about the sibling aspect and the friendly competition we set up between Braedan’s and Austin’s teams. But that can be a bit of a touchy subject around here, especially as Austin’s team was both larger and raised more money than his big brother’s. Fortunately, Braedan hasn’t seemed to notice that, in part because their individual donations came out so close (thank you, everyone, for taking the time to split your money between them), but I didn’t want to draw any more attention to it than necessary.
So, I switched my focus long after the kids’ bedtime last night and here’s the piece, which I’m pretty pleased with.
There’s also an article written by one of the doctors at Rainbow, Alex Huang, focusing on his St. Baldrick’s-funded research. He was never Austin’s direct provider, but it’s a pretty small world over there so we’ve certainly known him over the years. It was really interesting to read his background and how losing childhood friends to cancer drove him into this career. And I love his closing line: “Most importantly, my personal involvement in St. Baldrick’s fundraising efforts affirms my commitment to pediatric oncology research every year, so I don’t ever lose sight of why I am doing what I do in the first place.”
And, at the risk of boring you all with my repetitive lines, here’s an article from the April Heights Observer about our event, written by — ahem — Mark (his wife was clearly referenced and quoted too often to be the author).
You’ve read my words of praise for the St. Baldrick’s Foundation many times over (here) and have witnessed all my boys as they’ve shaved their heads year after year (2010 here, and here, 2011 here and here). What you may not have known is that each year St. Baldrick’s chooses five children to serve as “Ambassador Kids.” The chosen children represent different types of cancer, various ages, geographic, ethnic, racial and socio-economic backgrounds (since cancer does not discriminate), differing stages of treatment, and the sad fact that one of every five children diagnosed with cancer in this country will not survive.
Today, after months of keeping my big mouth shut (something I am so not good at!), I am finally able to publicly announce that Austin is one of the five 2012 Ambassador Kids. To be associated with an organization that does such valuable and necessary work (and in such a fun way) is an incredible honor, to say the least. And to have the opportunity to be a national face promoting research for this devastating disease is both inspiring and humbling.
Please read the St. Baldrick’s web announcement and visit Austin’s newly designed St. Baldrick’s page. And check out the rest of the beautiful photos taken by Tara Carmen of Carmen & Pugh Photography. And, of course, “like” St. Baldrick’s Facebook page to follow all the Ambassador Kids throughout the year.
Should be an exciting one . . . .
Look what I just found on the Hyundai Hope on Wheels website … a little video featuring moi. These are excerpts from the talk I gave back in September when they came to Rainbow as part of their drive across country during Childhood Cancer Awareness Month. The video is about five minutes long with my talk in the last three (cut down from a nearly ten-minute speech, which makes for some choppy transitions). It’s pretty good though; actually it made me tear up a little and I wrote the dang thing!
Plus there is a cute shot of clueless Austin sitting in my lap and making silly faces.
OK, we’re getting down to the wire here. The CureSearch Walk is this Saturday morning, starting at 9:30. (I think I said earlier that it was 9, but now you can get an extra half hour of sleep!)
We have a slowly growing team, now at 20-plus people. Not quite the 90 we had last year or the 50 I was hoping for, but I guess that’s what you get with a mostly healthy child (I won’t complain). If you still want to sign up, here’s the link. Once you agree to the waiver, click “Join A Team” if you’re an individual or “Register Multiple Walkers” if you’re a family. Then scroll through the team list to click Team Austin and proceed to register. They do ask for children registered, even if they don’t have to pay the fee.
The event should be quite fun: they have the Cavs dancers and Moondog there, plus face painters and jugglers and other kid-friendly activities. Plus the weather is supposed to be fabulous, which will be a welcome change over last year. And the kids always love to visit with the mounted police that roam Wade Oval. (And it will get the rest of us in the mood for Wade Oval Wednesdays … as if we weren’t already!)
If you’re coming, try to wear red, Austin’s favorite, to show team solidarity.
And if you can’t walk (or even if you can), you can also join our Kick It kickball teams for the June 10 Chagrin Falls event. Click here and then scroll down to Team Austin for 7-9 year-olds or Team Austin for 4-6 year-olds and click “Sign Up.” That registration process is super fast and easy, so you don’t even have to put it on your list of things to do later — you can finish it in the next 90 seconds.
Click, join, donate, walk, kick … make a difference.