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And so, another Childhood Cancer Awareness Month comes to a close. And I wonder if the general public is really any more aware. Did anyone learn anything new this month, anything that will change their actions or their giving patterns or their voting patterns? Did someone in a position of power see an image or read a story and decide to make a big change? Sometimes you wonder what it’s all for. We “like” some sad photos of sad bald children on Facebook and feel like activists. We share someone’s status update or read a heartbreaking blog written by a heartbroken parent and feel like we’ve made a difference.
We’re not really making a difference. Not enough anyway.
We walked on Saturday in the CureSearch Walk for Childhood Cancer. This was our fourth or fifth time walking and the crowd was smaller than ever. It was a gorgeous day, the route takes you through a gorgeous part of Cleveland (a very short, gorgeous part so that can’t be the excuse). There are free bagels and coffee and even post-walk lunch provided by Chik-Fil-A (trying to earn some brownie points with a non-controversial cause, perhaps?). By no one shows up. Like, really, almost no one. There were maybe 150 people registered. Couldn’t have been more than 200 there. 250 with kids and babies?
It’s weird. And sad. I know everyone has their causes and I certainly don’t go to every walk or race or stair-climb I’m invited to. And I’m not at all guilt-tripping my people for not going, I promise — not one tiny bit. I would have asked harder if I wanted you all there. St. Baldrick’s is our thing and that’s more than enough to satisfy us personally. But in terms of the bigger picture, the big, broad, general public picture and its “awareness” of childhood cancer? Well, it seems pretty non-existent.
And if the public is truly aware — aware of the truth that pediatric cancer kills more children than any other disease (and indeed more than the top five other disease killers combined), that one in every five children diagnosed won’t survive, that of those who do survive, more than 60% will have long-term, life-threatening or life-altering side effects, that less than 4% of national cancer funding goes to pediatric diseases, — if we really know all that and we still don’t show up. Well, . . . like I said, that’s sad.
We will again be walking in the Northeast Ohio CureSearch Walk for Children’s Cancer. This year’s event is on Saturday, September 28, capping off what will hopefully be a productive and effective Childhood Cancer Awareness Month (don’t get me started on the pink versus gold ribbon debate). I’ve set up a Team Austin and welcome anyone to join us. I also must mention that, upon my suggestion, the friends and family of Becca Meyer have established Team Becca, currently in first place for both walkers and dollars raised. If you’d like to join or donate on Becca’s behalf, that is totally fine with us. The reasons we walk are all the same anyway. Those reasons, in a repost from last fall, are here:
From a September 2012 article about the Walk, 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 the 28th, if you can. Stand with us. Walk with us. With Austin. With Becca. So we don’t have to add another name to this list next year. Because our work isn’t done.
Sorry this is so last minute but I’ve gotten a few questions from confused Walk participants, so here’s the scoop. The CureSearch Walk starts at 10am tomorrow morning at Wade Oval, right where Wade Oval Wednesdays happen (you won’t be able to miss it, I promise). If you plan to register once there, you need to arrive earlier (registration is from 9 to 10). Then we walk around the pond in front of the Art Museum and strollers are welcome. Following the Walk, there’s a ceremony, which was very moving last year. The stated end time is 1:00pm, but I don’t ever recall being there that long, and Austin has soccer starting at 11 (with team pictures starting at 10:30 — not sure we’re gonna swing that one!). You will be close to your car the entire time and are, of course, free to go whenever you choose.
In years past, we’ve all worn red, but Austin will be in his soccer jersey which is gray so that’s not much help (luckily, Braedan’s is red!). A fair sized crowd shows up but it’s not like the Susan G Komen run or even like Wade Oval Wednesdays so you’ll be able to find us pretty easily. And I’ll have my cell phone (come on now, when do I not?).
Thank you, friends! We look forward to walking with you. (And, you know, it’s not too late ... )
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.
The CureSearch Walk was lovely. Thank you so much to those of you who came or who donated money to our team. Northeast Ohio raised more than $47,000 for the important research of the Children’s Oncology Group.
Last year, because the weather was so awful, people registered quickly, walked with their heads down against the wind and took off before the rain came. This year, on a gorgeous sunny morning, we had the opportunity to actually have a ceremony and what an emotional ceremony it was.
The event opened up with Steve Crowley, father of Olivia and co-chair of the Cleveland walk, saying these words into the microphone, “There are two things no parent ever wants to hear: Your child has cancer. And I’m sorry, but there’s nothing else we can do.” Well, the crowd of gathered families got quiet pretty quickly with that one. I’ve heard that first statement (three times too many) and hope to never ever hear the second.
He was followed by our own Dr. Auletta, proudly representing Rainbow, and then oncologists from both the Clinic and Akron Children’s, all repeating the same message: pediatric cancer affects too many children and families, is the number one cause of death by disease for young people, and is pathetically underfunded.
Then there was the balloon release. So we’re all standing around on the grass in front of the stage at Wade Oval and you can see this woman up there with a huge handful of helium balloons and you’re sort of wondering who’s gonna get to hold them and what they’re for (and you know the kids were all wishing they were for them), and then the MC invites up the families who’ve lost a child to cancer. And they slowly start to trickle out of the crowd, one or two at first, parents and grandparents and little kids who’ve lost their brothers and sisters, some individually, some in groups. And suddenly there’s this big crowd up there, much bigger than it ever should be, and Sarah MacLachlan’s Blackbird is playing over the loud speaker and it was just devastating, crushing (play the song before reading on if you really want to experience this). Everyone was crying as all those families slowly let go of their balloons (how many times must they let go?) and up they floated, a crowd of dead children in the air above us, hovering for a moment and then taking off with the wind until they were nothing more than tiny white dots in the sky.
And then, while I was still wiping the mascara off my eyes, they invite the survivors up to the stage. So I popped my sunglasses on my face and carried Austin up with the others. A line of children, some young, some teenagers, many with hair just growing in, plus one grown man — a twenty-year survivor — standing up with his own healthy children, received their survivor medals from Mayor Jackson, Austin hiding his head in my shoulder the whole time.
And then, the heavy moments behind us (in more ways than one), we walked, in front of the Art Museum and around the pond, now more interested in ducks and geese than chemo and doctors. Kids just being kids, running ahead, lagging behind, laughing and chasing each other. Families just being families, enjoying a beautiful summer day. Together. As it should be.
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.
For those of you who are local, there are a few great ways to support the CureSearch Walk even if you’re unable to actually walk on that day. (Although if you are able to walk, please do! Register here.)
The two events below honor the memory of Olivia Crowley, a Cleveland Heights girl who lost her three-year battle with Ewing’s Sarcoma at the age of ten, shortly before Austin was born. I didn’t know her, but I know some of you did and have heard that she was a vibrant and loving child and a beloved student at Ruffing. Her parents are the co-chairs of the Northeast Ohio Walk and Mark and I have had the pleasure of working with her father on a variety of cancer-related issues.
So, in Olivia’s honor, raise a glass and a fork to help Reach the Day when all children diagnosed with cancer are guaranteed a cure:
Team Austin is at it again.
We will be participating in the CureSearch Walk on Saturday, June 4 at wade Oval and invite all of you to join us. Austin had a sea of red walking alongside him at last year’s unseasonably cold event, a team that was 90 people strong. We hope we can count on that many of you to join us again this year on a much warmer day (it has been moved up a month, so hopefully that statement is true!).
It only costs $10 for adults to register and is free for children, so this is really an opportunity to come out and show support for all the children who are currently in the fight and for those, like Austin, who have come out the other side. This event raises important research dollars but also honors the children and their families who’ve been touched by cancer.
Thirty-six children in the United States are diagnosed with cancer every single day. One fifth of them will die. Half of them, like Austin, will survive but with lifelong health complications as a result of their treatment. Until these numbers improve, our job is not done.
To register, click here. The website has some logistical problems, so follow my directions as closely as possible or you’ll have to jump through lots of unnecessary hoops. After you agree to the conditions, click “Register Multiple People,” which will save you a lot of time. On the next page, click “Join A Team.” Then click the “Select” box next to Select A Group (do not type in the name Team Austin or you won’t be allowed to register multiple people at once). When the team names appear below, click “Join Team” next to Team Austin and proceed to fill out the registration page for each of your family members.
Even though children are free, the organizers do want them to register in order to have an accurate head count. This will also help us reach our team goal of at least 50 walkers.
Walk with us . . . and make a difference.
It’s been raining today. Cold, windy rain. As I walked each boy into his respective school this morning, the other parents and I all grumbled good-naturedly to each other: “Yuck,” “Cold,” “Gotta love springtime in Cleveland.” And then I got in the car and caught a snippet on NPR about the documentary Music by Prudence. You know, the one whose Oscar win had its own Kanye West-Taylor Swift moment only this time with unknowns? So this young woman Prudence, whose severe physical disability rendered her an outcast in her African village, abandoned by her family, told the interviewer that the name of their band was an African word for “Rain.” And I thought, “Oh, of course. Here are these disabled youngsters, with no place in society and no home and no future, and they’ve named their band after something that symbolizes sadness and despair, the very opposite of the ray of sunshine representing hope and joy and all things good.”
But then she went on to say that in a dry land like Zimbabwe, rain is considered a blessing. Rain itself represents hope and joy and all things good. And these young people making beautiful music, when no one thought them capable of anything, much less something so positive, is like the rain that feeds the thirsty land.
Well, wow, now that’s a new way of looking at things. Talk about perspective.
Cancer is like that too. I would prefer we live without it (just as I’m still partial to sunny days) but it does have a way of making us feel fortunate, of making us recognize all that’s good in our lives. Saturday’s walk was just one example. To have so many people come out in the almost painfully cold wind and walk with us is just one small gift that cancer has given us. It wasn’t exactly a sea of red since the weather forced many of us (myself included) to cover up our red t-shirts with purple windbreakers or grey fleeces or blue sweatshirts. But nearly one fifth of the people there were there for Austin. I stood outside the line of walkers at the beginning to show him how far back his group went and he smiled and nodded from beneath the blanket we’d wrapped him in, because he got it. He knows people love him. We can all feel it.
So, it rains today. But our flowers will grow. And the sun will shine tomorrow.
Looking forward to seeing everyone tomorrow. So far, we have 81 walkers registered (well, I counted some unregistered kids in that total) which is by far the largest team in Cleveland. If you plan to register at the event, get there between 8 and 9. Otherwise, arriving by 9 should be fine. Please remember to wear red so we can find easily each other and make a strong statement in celebration of our strong boy Austin. Of course, you may need to wear red jackets or bring red umbrellas if the forecast is correct (hoping it’s not!). We’ve never done this walk before so I’m not sure how the whole process works, but we’ll try to get there early (which is not easy for the Gallagher family, trust me) so that we can gather ahead of time.
Thank you in advance for coming out to support us. It really does mean a lot.
And it’s not too late to join us.