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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 . . .
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 never had a chance to post about the CureSearch Walk, as I was busy packing for my fantastic getaway. Thank you to those who joined us or donated on our behalf. We had a nice group of about 25 friends and neighbors who walked alongside us on a beautiful sunny morning. The kids, of course, thought it was all about making baboushkas out of their new bandanas and devouring free bagels. And when they called up those who had lost a loved one for the balloon release, Austin eagerly insisted on going up. “Oh-kaaaaayy,” I hesitated, trying to quickly determine which child we’d release a balloon for. I settled on our beloved Ariana (of course) and Dylan, another young friend whose story is too pathetically heartbreaking to relate on this dreary gray Wednesday.
The overall event was nice, raising more than $60,000 for research. My one friend who attended for the first time was amazed at how small it was, compared to the breast cancer events she’s used to. Which brings me to my own little pity fest, egged on by the ever-increasing pink in our world. I don’t mean to begrudge the breast cancer movement its marketing success. I am indeed amazed and impressed by the truly remarkable feat it has achieved in in just three decades, making this once-silent disease the darling of corporations and advertising campaigns. And of course I believe we need to fund breast cancer research and of course I believe that awareness raising is a part of that. And I hate to act like my disease is the only one that matters, because if we all thought that, we’d never make any progress.
But the fact that Childhood Cancer Awareness Month falls right before Breast Cancer Awareness Month does make for a stark comparison, as that wave of pink inevitably bleeds over the calendar’s edges. I remember last fall, over Labor Day weekend, a local design shop began setting up its two-story pink ribbon display facing a busy intersection. Now, I am perfectly fine with them supporting breast cancer awareness and research, but does anyone even know the ribbon color for childhood cancer? It was Labor Day, all of three days into September. Keep your pink confined to those 31 days, dammit!
Okay, that was harsh and selfish, and probably isn’t the answer at all. Maybe we don’t need to designate any set period of days or weeks to one disease versus another, just like we don’t need to confine black history to the month of February. Maybe we simply need to look at numbers and impact and fairly and appropriately fund research across the board. Easier said than done, I know. And it’s no doubt true that more adults get and die from cancer than young people do. But it’s frustrating to know that pediatric cancer kills more children each year than AIDS, diabetes, cystic fibrosis, congenital heart defects, asthma and muscular dystrophy combined. But receives 4% of all national funding for cancer research and treatment. That alone should shock us into action. Not to mention the fact that of those children who do survive, one quarter suffer from life-threatening or life-altering complications from their treatment. And a major study out of Britain recently concluded that for survivors of childhood cancers “their risk of dying earlier than their peers who had never had cancer remained significantly elevated even after 45 years.”
So, I’m certainly not proposing that we stop or slow the progress made by movements like breast cancer awareness (although some people do raise very interesting questions about the tactics and especially about the promotion of products with pink ribbons that likely contain carcinogens, see here and here). But I am proposing that we focus on what’s actually important — in the case of breast cancer, what’s actually important is not saving the ta-tas but saving lives. And the same goes for our nation’s children. We must save them, every one.
There are too many balloons in this scene:
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.
There are so many reasons we love St. Baldrick’s. Of course, the very necessary research they fund is the main one. But these events and the shavees give us so much more than that.
Here are some of the gifts, large and small, we’ve received from our involvement with St. Baldrick’s this year.
There are tangible gifts, actual boxes that arrived in the mail and were excitedly torn open:
And then there are the gifts that could never pack up and mail, no matter how big the box. One middle school boy, who’s shaving at our event, is honoring his aunt who died nearly one year to the day of March 11. He originally set a goal of $500 but, upon seeing the reaction of his friends and family, quickly raised it to $1000 and had now increased it to $1,500. The husband of one of my best friends is also shaving, as part of Team Gallagher at AJ Rocco’s (along with Mark and my brother Kirk). This friend said he would happily have donated $1,000 on his own if he could, but since he can’t, he’ll raise it instead. And raise it has, in a mere 24 hours.
And there are more gifts, sometimes in place of gifts: One of the six shavees from St Paul’s Cooperative Preschool had his 5th birthday party over the weekend and requested donations to St Baldrick’s in lieu of presents.
The youngest shavee in our group, my four-year-old nephew Van, has spawned an event of his own. The staff at his day care were so inspired by what he was doing that they’ve organized a pancake breakfast to be held the day before our head-shaving, to which all the families have been invited. Austin and I will attend also and I will give a short talk. They’re making faces on the pancakes so they’ll resemble perfectly oval bald heads. All the money they raise, which they predict could be $500, will be donated on Van’s head in honor of his effort. Austin loves pancakes and, as you an see from his St Baldrick’s Valentine (which was posted on their Twitter feed last week), he loves bald people too:
There are currently nine students from Fairfax Elementary shaving their heads alongside Braedan, seven of them his second grade classmates. Last night at dinner, he was asking how much each kid had raised and I told him that some of them were still just beginning and didn’t have much or any money yet. Without missing a beat, he said, “I think I should give some money to them. Maybe one dollar each.” So tonight, my sweet charitable eight-year-old, will hand over some crumpled dollar bills (and a lot of coins) while I go through every page and place single dollar donations with my credit card. Love that boy.
And then there’s Mrs Glasier, fourth grade teacher at Fairfax, who set an extremely ambitious goal of raising $10,000. I will admit that I tried to talk her down to something more easily attainable, but she wouldn’t hear it. She’s only a small way there but this is a determined woman and I trust that she will keep asking, begging, pleading, cajoling and threatening until she reaches that goal, even if it’s not til after the event.
Another teacher in on the act (though not in the shaving kind of way!) is the boys’ preschool teacher who has insisted on going through and making a small donation on the individual pages of each current or former student and their siblings. I has suggested she could save a lot of time by making a few bigger donations, perhaps one to Team Austin and one to Team Fairfax, but no, she said she wanted each child to see their amount go up and see her name in their online lists of donors. She has spent years working with young children, after all, and she knows them well.
There’s another woman shaving at our event alongside her young daughter, who emailed to see if I knew any child who has or had cancer who might want to help shave her head. Huh, do I ever! I told her I couldn’t guarantee the quality of Austin’s head-shaving skills but she didn’t bat an eye (this obviously isn’t for the vain).
So, we receive these gifts large and small, a dollar here, a dollar there. One more shavee registered today and another tomorrow. One more sign of love and support for us and for all the others who’ve traveled this road before and all those who will travel it after us. It all adds up to something big and powerful. Actually, it all adds up to $5 million, raised in record-breaking time. Check out today’s St. Baldrick’s headlines. Recognize anyone underneath all that hair?
And then take a second (four minutes actually, but it’s worth it) to watch these two brothers. The wisdom of kids ….
We are well on our way.
The twenty-nine brave shavees registered for the Cleveland Heights St. Baldrick’s event have raised more then ten thousand dollars. And we are well on our way to reaching our event goal of $15,000. Of course, if every shavee actually met their own individual goal as stated on their page, we would bring in a grand total of $24,710. It seems like a lot for a first year event and I know I do a lot of asking, but I believe that by working together, we can make that happen.
It’s worth remembering that St Baldrick’s is not about people’s hair and it’s not about fundraising competitions. It’s not about the entertainment at the event, although I do have a balloon bender and the Heights High Barbershoppers both confirmed , in addition to the Irish dancers. It’s not about spraying your bald head green and proudly showing off your peach fuzz.
It’s about kids. And it’s about lives. There are 36 children diagnosed with cancer in the United States every single day, 46 if you count teens and young adults. One quarter of them will not survive. More children die of cancer each year than of AIDS, asthma, cystic fibrosis, diabetes, and congenital anomalies combined. Granted, survival rates have gone up dramatically over the past twenty years and that is certainly worth celebrating (we celebrate it here every single day). But two-thirds of those kids who do survive live with life-long health complications as a result of their treatment. Sometimes these are relatively minor, like learning problems or infertility (by “minor” I only mean not life-threatening because I bet if you ask people with learning problems or infertility, they’d tell you those aren’t “minor” at all). Others live with major health consequences, like Austin. Yes, we have cured him of his cancer (so far), but at what cost? With more funding and better research, maybe there would have been targeted chemotherapies that could have shrunk his tumors without necessitating the removal of one and a half kidneys. This are not small things, trivial side effects. These are life-altering.
It is important to note that research into preventing and treating childhood cancers is woefully underfunded. While organizations like the American Cancer Society like to include images of children in their advertising materials, a measly 4% of all their dollars raised go to pediatric cancers. Of course, cancer strikes a huge number of adults and I’m not in any way suggesting that they are not worthy of improved treatments. But think of the number of years a child has to live with the consequences of having had cancer. If a 65 or 70-year old receives a chemo drug that causes heart damage in fifteen years, well …? Not great, but so be it (most Americans aged 75 to 80 will have some form of heart damage already). If a one-year-old receives that same chemo drug (as Austin did) and may have to contend with heart defects at the age of sixteen? That’s just plain wrong.
So, if you’re still thinking about signing up or donating, know that these events and the money they raise make a true difference. You are impacting the lives of hundreds of thousands of children and all those who love them. Think of the road we’ve all been on with Austin over these past four years, the pain and the fear, the grief and the worry, the exhaustion and the uncertainty. Let’s take that away from the next family. Let’s make it so no other baby, no other mother, no other family has to go through what we went through.
And yes, let’s have fun at these events — fun is part of what makes them so special for cancer families (we need a little light in the darkness of treatment), but let us never forget why we do this. Every head shaved and every dollar raised matters. You matter.
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 . . . .
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.
Walk with Austin.
The CureSearch Walk for Children’s Cancer on Saturday, June 4 will raise awareness and critical funds needed for research into the prevention and treatment of childhood cancers.
While we all hear a lot about the advances made in cancer treatments, the truth is that for pediatric cancers, progress is painfully slow. Most national dollars go to adult cancers, and drugs and procedures then trickle down to kids. Sometimes this works fine, but it fails to recognize the impact of long term side effects on those who still have fifty or sixty or seventy years of life ahead of them.
I remember countless times when we were making medical decisions for Austin and his oncologist would list the potential side effects, things like heart failure or secondary leukemia, that might occur ten or twenty or thirty years down the road. We would worry and fret, wishing we had options, but his oncologist would always say, “You can’t worry about what happens in twenty years. You have to get to twenty years.” So we did what we had to and, while we are of course thankful for each moment we get today, he nonetheless has a lifetime of major health issues ahead of him.
It doesn’t have to be that way. It shouldn’t be that way. We must insist that doctors and researchers (and funders, both individual and federal) work in a way that guarantees progress. Currently only 5% of the budget of the American Cancer Society goes toward pediatric cancers. The same is true for the National Institutes of Health. Major nationwide fundraising activities, like Relay for Life (often hosted by high schools and colleges), dedicate less than 5% of their dollars to childhood cancers.
We can do better. CureSearch and the Children’s Oncology Group are the key to making a difference. They are conducting the research that may be too late to help Austin but could cure the child who is diagnosed today and another who is diagnosed tomorrow and another the day after that. All you have to do is sign up to walk on Team Austin on Saturday, June 4 at Wade Oval. Follow the steps I outlined here to make your registration as painless as possible. And make sure you join our team!
You may not cure childhood cancer. But you can take a first step.