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It’s March 20th. The first day of spring. A time that for most of us marks a beginning. A sense of relief (phew, we made it!) and excitement for all that’s to come (it is coming, you know). New growth, lengthening days, all the signs of life returning.
It is not so for the Meyer family. This day, one year ago, marked the beginning of the end. There was new growth alright, but not the kind that anyone wanted. The discovery of a new tumor in Rebecca’s brain and the stark reality — that her parents already knew but had hoped they’d never have to truly experience — that there were no more options. There was nothing to be done.
It wasn’t the end of hope. The family kept fighting, kept searching, kept grasping desperately for any possible way to extend her life. But they knew. One year ago today, on the first day of spring, they knew what was coming. And they knew they couldn’t stop it.
I still have hope. I hope that they Meyers will heal. That each day, they’ll feel a little more joy and a little more peace. That one day, they’ll laugh til tears run down their cheeks and they forget, even if just for a moment, that they’re sad.
And I hope that this is the beginning of the end of childhood cancers that kill. I’m not convinced that we can actually end childhood cancer, though that certainly is the goal. But I do truly believe that we can end childhood cancers that kill. I think with the right combination of funding and technology, brilliant minds and steadfast determination, doctors can achieve that much.
And I also truly believe that we took one step in that direction on Sunday. That the brave acts of the youngest among us will, in a real tangible way, move us closer to that goal.
I’ll repeat some of the things I said on Sunday, variations of which I shared twice, once with the Feldman family in the beginning of the event and again with the Meyer family in the middle.
The children of Fernway School and those of Fairfax School have had to learn some hard lessons in the past week and in the past year. They’ve had to see, up close and personal, how sad and cruel and deeply unfair the world can be. But they’ve also had the opportunity to see how good the world can be. How much kindness and selflessness there is out there. How many people are willing to come to your side in a time of need, to stand by you, hold your hand and bolster you up. How many are willing to do what’s right even when it’s terrifying.
They’ve seen that there is a time for laughter and lightness, a time to honor and celebrate what we’ve lost while still looking forward. They know what it means to sacrifice, to give when you know that you won’t get anything back from it. Every person in that room could have shaved their heads on Sunday and it wouldn’t bring Dan or Rebecca back. But they were still willing to do it. Because they embody hope.
Because they still believe in new beginnings.
Sunday was wonderful. Sad, happy, moving, chaotic, upbeat, serious, silly. Wonderful.
Thank you to everyone who helped the day run smoothly, so smoothly, in fact, that we finished shaving 170 heads in just over three hours. All of the volunteers, from the hard working barbers to the kids hawking baked goods, made our event the success that it was.
And it was indeed a success! Right now, we have $100,201 online plus another $3,381 in checks that I mailed today. I struggled a bit with our goal this year, after such a remarkable 2014. I knew that having two sick children in our neighborhood contributed in a big way to the $124K we made last year. From Carolyn’s unprecedented $12,000+ shave to the impressive showing at Roxboro Middle School, we would have been hard-pressed to match those incredible earnings. But still, I went big and set our initial goal at $125,000. About two weeks ago, I was feeling a bit disappointed at our mediocre progress (I’m not sure whether I’m an eternal optimist or just plain greedy because there was nothing mediocre about what we accomplished!), but I began debating what to do: Should I lower our goal? To a more attainable and realistic $100,000? That felt so defeatist. I didn’t want to give up! But we simply weren’t going to raise $125K, even I had to admit that.
I finally settled on $111,000, a nice in-the-middle sum that included my favorite number. And I’m glad I did, because I’m fully confident that we’ll reach it. I’ve followed my participants’ pages and their totals are rising every day, especially those of the women who did the full shave. No doubt, they’ve gotten enough stares and questions and shocked responses (“You really did it!”) that they’ve garnered additional donations. All of that, plus the couple thousand we should make from the Dewey’s Pizza School benefit in June and I think we’ll be there.
But once we’re in that room, putting the “community” in Community Center, the money matters less and less. Whether you raised $50 or $3,000, every one of you who set foot on that stage made a powerful statement. To sick children, you said, “I stand with you. You are not alone.” To your peers, you said, “I can see outside of myself. There are things more important than how I look.” To the world, you said, “I am willing to sacrifice on behalf of others, even others I don’t know. I can make a difference. You can too.”
Everyone in that room heard you. Everyone was moved by your generosity, your kindness, and your courage. We all watched our children, the little people who are supposed to look up to us, do things we might not be brave enough to do (I’m certainly not). And we watched our own peers do the very same things. We witnessed people growing closer, mother and daughter teams shaving, fathers and sons, brothers and cousins and classmates and friends doing something big, side by side. Which is the only way we should ever be when we do something big.
I saw three children, two boys and a girl, pay tribute to their father in the way that he would have chosen had he had the chance. They climbed on a stage and sat with their friends and schoolmates to make the world a better place. And then they went to his funeral. It’s not the way the childhood should work, there’s no doubt about that. It’s far, far from fair. But they did it and it made them each smile. At least a little.
I watched a beautiful young woman shave her head in memory of her mother, with tears streaming down her face. And another young woman, with full pregnant belly, making the world a little safer for her unborn child. I watched a six-year old girl and her mother holding hands with the clippers buzzing above their heads, their eyes on each other, their hearts with their lost friend.
And the boys. I know I spend a lot of time highlighting the girls and the women, but this is a big deal for the boys too. It requires courage and a willingness to stand up and truly be seen, stripped of that thing that makes you simultaneously stand out and blend in. One, who’s shaved with us since the beginning, said that he wasn’t sure he wanted to continue this year now that he’s in middle school. Looks matter to the fellas too, you know. But then (and I quote), “I thought that this might save my future children from having cancer, and I never looked back.”
And that’s why we do this. So that not one single one of those kids who joined us on Sunday, not one 4-year old or one 15-year old, has to hear the words, “Your child has cancer.” And that they certainly never, ever have to hear the words, “There’s nothing else we can do.”
I am humbled and honored to be able to bring this event to this community and I am humbled and honored by how enthusiastically this community embraces this event. Your eager participation and your incredible generosity, both of spirit and of all things tangible, are beyond measure.
As of right now, between our online donations and the cash and checks we collected today, we’ve raised $98,673. I have no doubt that we will creep over the $100,000 mark in the next few days and even reach our very ambitious goal of $111,000 by the time the fiscal year ends in June. (That means you can keep giving, people!)
There were quite a few highly emotional moments today that I’ll share in the next few posts, but for now, please rub your fuzzy heads, pat yourselves on the back, hug a bald person, and watch Fox 8 news in the morning (8am?) to see Braedan, already bald, and his classmate Joey, who’s shaving on the air, tell you why they do what they do.
I truly thank you from the bottom of my heart.
In the eleven and a half years that Mark and I have been parents, we’ve heard the words “Your child has cancer” on three separate occasions. And each time, it stunned us and terrified us and brought us to our knees.
But every day we know that we’re the lucky ones because we’ve never had to hear the words, “There’s nothing else we can do.”
And the reason for that is medical research. If Austin had been diagnosed with his rare cancer twenty years earlier than he was, I’m pretty confident he wouldn’t be here today. Pretty positive, in fact. But somebody twenty years ago funded the research that saved his life. Now it’s our turn to do the same for some other child, and some other mother, twenty years from now.
I don’t run this St. Baldrick’s event for Austin, although it certainly felt that way in the beginning. Today’s truth is that Austin does not have cancer and, at the risk of inviting bad luck, I don’t believe he ever will again. If I really wanted to do something for Austin, something that would actually benefit him as an individual, I’d be raising money for kidney research. That’s our next big thing, his next big thing.
But this isn’t for Austin. And it isn’t even for Rebecca, though she too is a driving force. This St. Baldrick’s event — and all the money that comes with it — is for the next kid. The one whose name we don’t know yet, the one whose health updates don’t appear daily in our newsfeeds. It’s for the parent who hasn’t ever had to hover over a hospital bed, watching the lines on a beeping machine, the parent who’s never had to write a CarePage update, who’s never imagined holding their dying child. That parent out there who is innocently watching their healthy child, worrying every day worries, celebrating everyday successes, with no inkling of what’s to come.
Because we were all that parent once. Every one of us who’s walked around the pediatric oncology floor with a cup of weak coffee and a dazed look in our eyes was once a normal parent, with normal expectations, normal fears, normal hopes.
So, until fewer and fewer parents have to hear, “Your child has cancer,” and until NO parents have to hear, “There’s nothing else we can do,” I will keep fighting this fight. I will keep running this event, begging for volunteers, pressuring people into parting with their hair, harassing them to raise more more more. I will keep honoring our children, the few we’ve lost and the few we almost lost, alongside the many who are brave enough to sit in the barber’s chair and shave it all off for someone else. I will keep shouting from the rooftops that this is important and necessary and urgent. I will keep fighting.
And you can too. www.stbaldricks.org/events/clevelandheights
Some of you may have seen this yesterday when I posted it on Facebook, but it’s worth a click to enlarge:
It provides us all with some fairly good reasoning for why we need to fund pediatric cancer research. Not that many of us actually needed that reasoning, but there it is.
But you know that part on the graph: “Well, survival is a relative term,” where it lays out the percentage of survivors living with severe and life-threatening health problems? Yeah. That.
Austin had an appointment with his kidney doctor yesterday, and, well, it’s not doing so great. I mean, it’s still doing. Doing whatever it needs to do every second of every day, despite being a quarter the size of its average kidney peers. But it has gotten noticeably worse since November.
We’re not in panic-mode or anything. This seems to be part of the process. And that’s not just me being super blase about everything; it’s true. His doctor is hopeful that with extra hydration and a shift in medications, we could see a dramatic turnaround. So Austin now has special permission to have a water bottle at his desk and to bring it along with him anywhere he goes. Of course, the last thing Austin ever wants is special permission to do anything that’s in any way different from what his classmates are doing. But who knows, maybe water bottles will become all the rage for second graders from now on.
Here are the details: His creatinine, that number we watched so carefully throughout the spring and summer of 2010, has shifted upwards in a way that concerns all of us. His estimated GFR (another number we watched so carefully in the spring and summer of 2010) is now 38. When/if it hits 30, he’ll be in Stage 4 kidney failure instead of his current Stage 3. His doctor, who is calm and collected beyond all measure, has assured me that he could hover at any one of these numbers for years on end. So his creatinine might decrease to 35 but then just sit there for three years, before decreasing again to 32. It’s not until it reaches 25 or below that we would start to test potential donors. And not until 20 or even 15 that he would need to start dialysis. So we have time.
She did say that her number one indicator of where someone sits on the continuum of kidney function is how they look, feel and act. And since Austin was doing his usual zoom across the room on her spinning doctor’s chair when she walked in the door, she feels pretty confident that he’s fine. I watch him every day and would whole-heartedly agree.
But as we edge ever closer to the five-years cancer-free mark, we know that we are never truly free of cancer. Its shadow will follow him, and all of us, for the rest of our days.
And now, as I return from a PTA meeting to edit and publish this post, I find myself under yet another dark shadow cast by cancer. The father of one of our past shavees, and a shavee himself last year, died Monday morning from a brain tumor. Unexpectedly. Despite, you know, the brain tumor. He was laughing yesterday morning. Mere minutes before he felt dizzy, laid down, and then was gone. Laughing and talking with the nurses in the extended care facility where he was recuperating from brain surgery before returning home to his wife and three kids. And then he was gone.
And now this woman, who is lovely and upbeat and always willing to help others, is without her partner, forever more. And her children, who were so so lucky to have known him, are without their father. They really thought he might die about three years ago and I believe, from the people who know them better than I do and from the wife’s own writing, that they lived each day to its fullest and never took anything for granted. But still. . . Still.
And still, they move on. Two of this man’s sons would like to shave this Sunday in his honor. I am currently revamping the day’s schedule to fit them and their peers in before the 2pm funeral. And it is my deep honor to do so.
But you know what? Fuck cancer. And all of its shadows.
I guess people really needed to hear those words: Your work is not in vain, because that post was by far the most viewed and most shared one I’ve ever written. It’s not the best I’ve ever written, but the message undoubtedly resonated with people. We are hungry to know we are not alone in this fight (any fight) and that our advocacy does matter.
In a nice segue to that other cause that keeps me busy, I received a message last week from one of Austin’s old nurses at Rainbow. This is a woman I haven’t seen or heard from in years and I have to admit it took me a second to recognize her name since I knew her best before she was married. But she drew the parallel between that post and my work on behalf of St. Baldrick’s and said that I had long given a voice to children with cancer and their families and that what I attempt to accomplish with my event is, . . . you guessed it, “not in vain.”
Sometimes my success on that front feels small in light of such an enormous problem. The ten or twenty dollar donations I beg for, that one extra shavee I somehow convince to join us . . . how could any of this make a difference when we’re talking about thousands upon thousands of sick children and millions upon billions of dollars needed for research?
But it’s not small. It’s actually quite big.
Here’s what’s big: We have 133 people signed up to shave their heads next weekend. And more signing on every day. And a fair number of them are women and girls. That’s no small feat. Here’s what else is big: They’ve raised almost $50,000 for childhood cancer research. And by “almost,” I mean that by the time I post this, we’ll probably be there.
Here’s another thing that’s big: A grandmother who has signed up to shave her head not because any of her children or grandchildren have ever had cancer. But precisely because they haven’t. She feels just thankful enough and just lucky enough to be willing to do this on behalf of someone else. Someone she doesn’t even know.
Here’s what else is big: Rebecca has been gone for nine months but she looms large in the minds of many. She is so, so far from forgotten. Next Sunday, a cadre of her friends, from her earliest babyhood playmates to the classmates she never had enough time with, are either shaving their heads or cutting their hair in her memory. And she was never even bald. She held on to that crazy mass of curls until her last day on this earth. But still, they will sit up there, these little six-year olds who should never have to fathom such big and scary things, and they will shave their own heads for her.
And yet, it’s not really for her and they all know that. No amount of heads shaved, no amount of money raised, will ever bring her back, will ever make her well. But they will do this anyway. And that is big.
Rebecca’s best friend, the frick to her frack, is a six-year old first grader at Fairfax. She loves princesses, much as Rebecca did, and usually wears her long light brown hair in a braid down her back. I don’t know her all that well, but I feel pretty safe in calling her a girly girl. And my assumption about girly girls is that they like their hair. Or they at least like to have hair. But nine days from now, Ruthie will be bald. Bald. And not only that, but her father, her mother and her four-year old brother will be bald alongside her.
None of that will bring Rebecca back. None of it will make them miss her any less than they do today. But they will do it anyway. So that no other six-year old has to lose her best friend.
And THAT is big.
I never intended to stop blogging after Rebecca died. It just sort of happened. I’d been writing a lot, mostly about her, then summer got underway and when the next big thing worth sharing was our trip to Brazil, and when that trip included the “tragedy” of sitting on a flooded freeway for seven hours instead of watching the USA versus Germany game that we had traveled ten thousand miles to see, I somehow had enough perspective to just not write at all. And then it went on, the summer days turned into fall and inevitably winter, and now I haven’t posted in more than half a year. I almost laughed recently when someone said, “Oh, I read your blog all the time,” and I thought, “Really? All what time?”
But anyway, I’m back. With much to say, including an eventual hilarious run-down of that large and at times infuriating country to the south of us. But right now, what has really drawn me back is that St. Baldrick’s season is upon us yet again. Our 2015 event is well under way, with over 30 participants already signed up and nearly $1,500 raised (record-breaking at this very early stage of the game).
Last Thursday, St. Baldrick’s announced their 2015 Ambassador Kids to the world. I know the date because immediately after reading though their stories, I shared the news on Facebook. As always, they’ve chosen five children and teens from across the country with different types of cancer who represent the spectrum of treatment status — from the child in treatment, to the child who’s “cured,” to the one who’s relapsed, to the one with no evidence of disease. And of course, always, they choose one of the five who has already died. Because that’s the stat we all live with. One in five. Who’s it gonna be?
I cried as I read through their stories, as I always do, but I was filled with admiration for all they’ve overcome thus far and hope for all they have ahead of them. But I was also filled with something darker, a tiny inkling of dread. A nagging thought, deep inside myself, that I couldn’t even articulate at the moment: One in five didn’t seem like enough for this bunch. One in five seemed awfully lucky.
A few nights later, no wait, let me be more precise: TWO nights later, as Mark and I were getting into bed, he said, “I hate when I get these emails from St. Baldrick’s that so-and-so has just died.” “What? Who died?” He held up his phone to show a girl, 12-year old Caroline who I had just read about. What was he talking about? He is clearly confused. I had just met that girl, for crying out loud.
And I scoffed, “No, not her. She’s not the one who died, honey. It was a boy, a little 8-year old boy. I just read the stories.” As if that little fact — “I just read their stories” — somehow protected them. I mean, she couldn’t possibly be dead today if she wasn’t dead two days ago when *I* read her story? She’s not the Dead One. He is.
Well, they both are. This girl, Sweet Caroline, forever 12, was announced as an Ambassador Kid on Thursday and died on Saturday morning. Two days of fame. Two lousy, measly days.
Being a St. Baldrick’s Ambassador Kid is a fairly big deal. It’s special. Suddenly, there are thousands and thousands of people following your story, shaving in your honor, wishing you well. It doesn’t actually change anything, it doesn’t magically make you healthy. But it’s still special. And she should have had a chance to enjoy it. To revel a little in her own celebrity.
She should have had a chance to enjoy so much. And to revel in her own ordinary life.
But she didn’t. And this is why we do what we do. This is what all the hoopla is for. All the green hair, the fundraising competitions, the shamrock cupcakes, the endless emails. It’s so that kids stop dying.
Last night, after I finished entering in all the cash online and had made my final calculations, I was so excited to announce that our event raised a grand total of $112,793. Feeling satisfied and proud, I was eager to share. When I read the news of Rebecca Meyer’s latest MRI.
And it wasn’t good.
And sometimes it feels like we just don’t do enough. Like we just can’t act fast enough. All those thousands of dollars raised in her name and in her honor and what good will it do? Sure, it may save some other child down the road and yes, of course, that’s noble and right and ultimately what we all want, but at this moment, for this child, for this family, they just want her. They’re not thinking about the new research we’ll get in two years or five years or ten years. They need it now, they need it tomorrow.
You may be scratching your heads and thinking back to Sunday’s event and wondering, “Wait…was she there? Did I see this sick girl?” Well, yes, she was there. But no, you didn’t see a sick girl. She was well. Happy, vibrant, head full of hair, face full of light. She was very, very much alive.
She’s here last Friday, in pink head to toe, sticking out her tongue like any five-year-old should:
And here again, on Sunday, watching with glee as her older sister shaves her head in her honor:
She is alive, goddammit, and she deserves to stay that way.
A couple of times on Sunday, I referred to people’s inner beauty, as in, “These girls are showing us what it means to be beautiful on the inside,” implying, of course, that they were no longer beautiful on the outside. But I was all wrong.
They are indeed beautiful on the outside. I just needed my own definition of beauty challenged by them. By you. All of you.
Sunday was full of beauty; it was all around us.
This is the beauty of family: Father and son working together to save one of their own (and remembering to have fun in the process).
And this is the beauty of family: A father shaving in solidarity with his son, whose bald head took some getting used to.
This is the beauty of small people doing big things:
This is multiple generations of beauty: grandmother and granddaughter watching the mother shave her head.
Over the past week, I’ve been called an inspiration, a powerhouse and — my personal fave — a force of nature. While that all makes me feel really, really good, this is not a one-woman-show, people. There is an army of volunteers who stand behind me and beside me without whom our event could never happen.
First of all, the barbers. They are on their feet shaving head after head after head for hours on end. They hunch over the little kids and let the very littlest stand up in the chairs. They calm the nervous shaking bodies and they comfort the crying. They laugh and they cheer and they do it with style.
So, a most enormous and heartfelt THANK YOU to Alex Quintana and his crew from Quintana’s: Theo, Mike and Jessica.
And, of course, to the fabulous Shawn Paul, aided and abetted by Bethany and Angela.
Thank you also to Rachel and Megan from Kreate and Rick, Laura, Racheal and Caroline, without whom there would be no bald heads (and what would be the point of that?).
Thank you to my tireless Treasurers and Registrars: Becky, Ann, Christie, Nancy (mom), Mark (honey), Jennifer, Julie, Julie, Kristy, Brenna, Ashlie, and Melissa. No one could check in and no one could give money if it weren’t for your hard work (and what would be the point of that?).
Thank you to everyone who worked at the Bake Sale table, especially Shari, Sheryl, Joe, Simon, and Logan, and of course, to everyone who baked for the Bake Sale, even though I have no idea who you are or what you brought. When I headed over to start emceeing, there were maybe two items on the table and when I finished four hours later, there was only one item on the table and I asked a volunteer if there had been any food at all. “Oh yes!” she assured me, and she must have been right because it brought in an additional $338. Nicely done on that!
Thank you to Simone Quartell for donating the American Girl Doll and to Nancy, Nicole, Kristi and Amelia for selling raffle tickets. We made one little girl very happy, plus raised another $478 for cancer research.
Thank you to anyone and everyone who stepped in and did jobs small — sweeping up all the hair off the floor (Nancy and Caroline) — and big — taking all the beautiful photos which you will soon get to see (Dallas and Sagi).
Thank you to the City of Cleveland Heights for so graciously hosting us year after year.
Thank you to Jason for helping me celebrate my own knight in shining armor, Mark, as he was inducted into the Knights of the Bald Table. I think your bagpiping skills served a recruiting tool for next year and the year after that as we now have lots of little boys (and girls) eagerly awaiting their own knighthoods.
And, of course, without question, the biggest, deepest, most well-earned THANK YOU to all the men, women, boys, and girls who shaved their heads or donated their locks on behalf of sick children. The entire room was overflowing with raw and honest examples of generosity and kindness. The incredible bravery of our shavees was matched only by their pure joy at having done something so special.
This is a composite of kids from Team Fairfax centered around Becca, in whose honor they all shaved. And, yes, those are four GIRLS in the pics on top, demonstrating the truest meaning of friendship. Braedan happily reported that no one was made fun of at school today (and good thing because if they were, I would have marched my ass in there and gone house on those kids whose classes I spoke to all day Friday) and that they were congratulated by many, many, many. He feels like they’re all part of something bigger, like they’ve shared an important life experience that has brought them closer (“even,” as he noted tonight with some amazement, “the girls”). It is a powerful lesson these children have learned together. And I am so glad to have been part of it.
I have a thousand other stories to tell and about that many photos to share so check back in the next few days. But for now, I simply say Thank You.