I lied to Kat Meyer. It was early last fall, after the kids had gone back to school and her family was briefly home in Cleveland during their months-long stay at the Children’s Hospital of Philadelphia. I told her, expert that I was in such things, that the year ahead would be exhausting. It would be sad, hard, frustrating, terrifying, surreal and completely and utterly exhausting. But then it would be over. They would pull together and they would do this hard thing and then they would be okay again.

And there was my lie.

I only said it because I believed it was true. That first critical surgery, where doctors cut open the skull of her five-year old daughter to remove a “bad rock” from her brain, had been successful. And so they would move on, going through the miserable motions that are childhood cancer treatment, and then they’d get on with their lives. Becca would get on with her life. Or so it seemed.

I spoke with more truth recently, after they discovered her cancer was back and treatment options nearly nonexistent, when I told her that she had entered a realm I knew very little about. Because, while I’ve heard the words “Your child has cancer,” on three separate occasions, I’ve never heard the words, “And there’s nothing we can do about it.”

Quite honestly, I don’t know a thing about death. Not in any real sense at least. And yet I’ve become this de facto expert, helping people prepare their children, helping people grieve and heal, planning and organizing and gathering, comforting the mom whose husband died suddenly, giving advice to the friend whose mother is getting close.

But I haven’t experienced any of it myself. I’ve never lost anyone. Besides my grandparents, I haven’t lost my parents or my in-laws (nor even had a significant scare). I’ve never lost a cousin or a sibling or even a friend. I’ve barely experienced death at all.

I have glimpsed it though. Like a shadow lurking behind me. I’ve felt it there, hovering over my shoulder, slipping just out of view when I turn to stare it straight in the eyes. It’s been present enough so I can smell it and almost taste it in my mouth. I’ve had those words, “Palliative chemo” uttered to me, but only in response to a What If question (“What if this treatment protocol we’re about to start doesn’t work?” . . . “Palliative chemo.”) I smelled death around me for the sixteen days back in May 2012 when we thought his cancer had come back for a third, and final, time. Just enough so that I’ve vacillated between two equally horrible extremes: One in which, in strange moments of calm, I could almost allow a slow but steady acceptance to seep through me. I could say to myself, “Okay.  This is coming. This is really and truly happening. And we will make it the best, most peaceful and most comforting death ever. And then we will pick ourselves up and we will move on. We will be okay.” And as soon as I’ve dared to allow such traitorous thoughts into my mind, they are knocked out with pure and absolute refusal. This thing will not happen. I refuse to allow it to happen. “No, you will not take my child. I WILL NOT let this happen. I will fight, scream, beg, plead, claw my way to him and I will hold on with a grip so tight that nothing, no one, will be able to pry him from my arms.”

I imagine Kat and Eric go through that particular roller coaster ride several times each day now, as they watch their seemingly healthy daughter run around the playground, perform in the kindergarten concert in full princess attire, squabble with her friends over toys. And yet they know, they know what is coming. What might strike on any given day. Death is lurking in the shadows, hovering over their shoulders. And if they fight it, refusing to allow it to come into full view, then I wish them all the strength and luck in the world. And if, given their sad reality, they accept their fate with broken hearts, then I wish them all the strength and luck in the world.

 

 

 

This might be part one in a series titled Death in the Age of Facebook, about which I have a fair amount to say.  But let’s start with this:

Positive thinking does not cure cancer. A good attitude will not help you survive.

It’s a lovely idea, of course, one that makes us feel like we have a tiny bit of control over our destinies. Be strong, keep your chin up, and this too shall pass. Only that’s not true. And not only is it not true, but it’s harmful and hurtful to those who don’t survive, those whose cancers simply can’t be beat with a smile and a sunny outlook.

Look at the language we use around cancer: This person “succumbed” to the disease, while that other one “overcame” it. Patients are warriors fighting a battle that requires strength and courage, a willingness to charge forward and face any challenge, no matter how terrifying and no matter how futile.

There is a lot about Facebook and social media that is wonderful when you’re faced with a crisis. You’re able to connect with others who’ve experienced what you’re going through, you’re able to share information in an honest and direct way with large numbers of people, and you’re able to draw strength and love from the strength and love of those around you. The online response, even if it’s just the click of a Like button, can be overwhelming and heart warming. It’s a sign of the invisible thread that ties us all together, caring about one another, wishing each other well.

But it also gives us a glimpse into how differently people handle the tragedies that befall us, tragedies like death sentences for five-year olds. Now, I know these are treacherous waters to wade through, that no one truly has the right words, that no one can take away the pain and suffering of the family, no matter how badly they may want to. And I know that any of us might say the wrong thing at the wrong time, in a misguided attempt to be helpful.

But one thing that I wish no family would have to bear is the idea that they should “keep their heads held high” and not “give up.” As if they themselves, their grief and their despair, are somehow responsible for their lack of options. Sometimes, as horrid as it is, there simply are no options. Or no good options at least. Now I’m not saying give up; I believe in holding on to hope until the very last second. But be sad. Let your head hang down and cry when you need to because this is devastating. There is no “chin up” attitude that can bolster a family faced with this reality, no “rah rah” mentality that can keep death at bay.

Although I sure as hell wish there was.

 

 

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, 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:

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And here again, on Sunday, watching with glee as her older sister shaves her head in her honor:

And again, with her bald schoolmates around her (goodness, these Fairfaxians like to stick out their tongues, huh?):
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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.

Contemplation can be beautiful:
Courage can be beautiful:
And pride can be beautiful:
Beauty is young:
And old (relatively speaking, at least!):
And male:
And female:
And this is the beauty of friendship:

If you want a few more examples of beauty, check out the first wave of photos here. More to come shortly.

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.

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And, of course, to the fabulous Shawn Paul, aided and abetted by Bethany and Angela.

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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.

1658527_10152318599869310_1735909195_o1959706_10202408767438381_2041157432_n1459050_10152298500585575_216691851_n1920139_10152298500650575_621662649_n Typical that he’s helping me out during his own knighting, but
I couldn’t hold the microphone, the St Baldrick’s-issued wand and the script all at the same time!

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.

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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.

I am beyond exhausted so this will be the short one.

But I am also beyond thrilled and beyond touched and beyond awed by what I saw today. The incredible outpouring of support and love, friendship and bravery, kindness and generosity left me breathless.  I am so honored to have been able to bring this event to so many people and I am so moved by all those who have embraced it with such enthusiasm.

As of this moment, counting the $101,116 we’ve raised online and the $2,450 check we expect from the lunchroom competitions at Roxboro Middle School, and the Bake Sale and American Girl Doll proceeds, and the cash and checks turned in today, we should (at this moment in time) have raised $108,257.

Wow. Just wow.

My local readers: Please promise me that tomorrow, wherever you go about town, if you see a bald man, woman, boy or girl, you stop and tell them good job.  Good job, my bald friends, good good job.

In four more days, I will be surrounded by bald heads. In fact, many of you reading this will be surrounded by bald heads. In addition to the 160 registered participants at my event this Sunday (you read that right: 160 participants!), another 114 students will shave at University School on Friday (and yes, as of this moment in time, we ARE beating them in the fundraising department), plus 56 people at Rainbow on Friday morning, 180 in Rocky River on Saturday and 70 more at A. J.Rocco’s on Monday. So we should ALL be surrounded by bald heads by this time next week.

What an extraordinary year this is turning out to be.  I am completely blown away by the enthusiasm and generosity of spirit that this has generated in our community.  We have four elementary teams from the Cleveland Heights-University Heights district, plus Roxboro Middle School and two teams at Heights High, in addition to four elementary teams from Shaker, one from Lakewood and another 24-member strong team from Gesu School in University Heights.  Imagine what those school hallways will look like on Monday as those brave children walk proudly to their classes.

Oh, and have I mentioned the money we’ve raised? My initial goal was $60,000, but we are now over $70,000 and I think I need to up our current goal of $75,000 yet again. We have blown past every expectation I’ve had for what this year could become. More people, more schools, more money. I am so so thrilled (and a little nervous about how the whole thing will roll out on Sunday), but mostly I am moved.

I am moved by the number of young children stepping forward to stand in solidarity with those in treatment. I am moved by the number of girls and women (19 in all!) who are loudly proclaiming that how they look does not define how beautiful they are.  I am moved by the number of teachers sitting side by side with their students as live out this lesson in generosity. I am moved by the mothers and fathers and sister and brothers and friends of survivors and those currently in the fight who are saying, “You don’t have to go this alone. I am right here with you all the way.” I am moved and deeply saddened as I read through the donations on my participants’ pages and see how many people give “in memory” of someone.

We have lost too many people already. All of us have: parents and grandparents, siblings, friends and spouses, and — saddest of all — children. It doesn’t have to be this way. We can do better. The grants that St Baldrick’s awards to doctors and researchers truly do better; they are making a difference. And so are all of you, by shaving, by cutting, by volunteering, by raising money and by giving money. We are doing better.

www.stbaldricks.org/events/clevelandheights

I just realized that we are awfully close to a pretty significant milestone. In 2012, my St Baldrick’s event raised $37,271. And in 2013, it raised $45,030. So far this year, we’ve raised $18,168. Which, for my math-challenged friends, means that we have have raised $99,469 so far. And are a mere $531 away from a grand total of $100,000.

So, what are you waiting for? Get over there and donate!

St. Baldrick’s is less than one month away and we are well on our way to the most successful year yet. As of this moment, there are 84 people signed up and nearly $17,000 raised.  This is way ahead of where we’ve been in the past, so I am super excited, especially since the vast majority of fundraising tends to happen in the final week.

I feel like the movement I’ve been hoping to start in our community is really and truly happening.  We have teams of kids from four elementary schools in CH-UH and four in Shaker plus a Gesu Team, a Rox Middle team, and several from Heights High. We also have tons of girls, not just cutting and donating their hair, but many actually shaving, including four Heights High girls (the Bald Babes) and 4th graders from both RoxEl and Fairfax and my sweet little friend Sara Schubert, a Fairfax second grader. These girls display a sense of self-confidence and self-awareness that is most impressive to me.  I’ve spoken with several of them about their decision, trying to make sure that they understand the impact of what they’re doing (as well as the dreadfully slow growing-out period they’ll have to endure!). They’ve all responded to me with such maturity and careful thought, that I am sort of blown away. We hear a lot in today’s society about how girls are bombarded with princess images and made to believe that their looks are of singular importance in their lives. And yet these girls have stated their goals with such simple clarity, as though physical appearance were far down on their list of defining characteristics: “I know I may look funny, but I’m doing to for something good so that’s okay.” Or, “Well, I think I’ll look cool with a shaved head!” I am completely moved by their commitment and their gutsiness and can’t wait to celebrate them at our event.

Another thing that I’m very excited about for this year is that I’ve finally convinced Mark to shave at my event instead of downtown like he usually does.  This is his seventh year, which means he’ll get inducted into the Knights of the Bald Table, an exclusive St Baldrick’s club for long-term shavees (that’s written with a wink and a nudge since there are no real perks to such knighthood). But now I will have the honor of knighting him, which I believe will be highly motivating to the kids present who are in their second or third year of shaving. Braedan will be next in that regard and is already eagerly awaiting his own knighthood in two years.

All in all, I think this event is extremely empowering for young people, as it gives them an opportunity to truly make a difference in their world. They are giving away a literal piece of themselves on behalf of others, and while it’s certainly a fun and cool thing to participate in with their friends, it is also a meaningful and often very powerful experience. I am so proud to be able to bring them this chance to change the course of someone’s life, as they raise money to save the next kid diagnosed, someone they don’t and will likely never know.  We have a seventh grader from Rox Middle who’s currently in treatment for leukemia and his mother said he was initially very hesitant about being honored by this event, as he’s usually the one raising money or doing good for others. I told her to make sure he knows that his participation in this event is for others. Unless he remains in treatment for many many years (which I sincerely hope he doesn’t), the money that is raised today in his name and in his honor will be used for treatments for some child diagnosed well into the future. Likewise for Austin, who is always a bit overwhelmed (and even surprised) by the number of kids who say they’re doing this for him, while Austin will never benefit from the new cancer research that gets funded by St Baldrick’s. At least, I hope he won’t since I hope he never needs treatment for cancer again. If we wanted to do something truly for him, we’d raise money for kidney research! But this isn’t about us, this is about the families who come next, the families that don’t yet know their world will be rocked by childhood cancer. This is to ease the path of the next child and the next mother and the next brother who have to bear this terrible burden.

This is why we do what we do. This is why people shave. And this is why we come to you year after year asking for your financial support. I will keep coming back to you because you also have the chance and the power to change the course of someone’s life. You too can sign up to shave your head, by linking to our event page here. Or you can make a donation on the heads of any of these brave men, women and children. Austin is here, Braedan here and Mark here.

On behalf of my extremely lucky family and on behalf of all those who don’t yet know how unlucky they may be, we thank you.

My, what a difference four years can make. Last night was the fabulous Fairfax Cabaret, an every other year talent show that takes place on the high school stage. There’s a full stage crew, spotlights, headset microphones and all the accoutrements of a professional production. And it is so much fun, with everything from piano and violin solos to groups of girls singing and swaying to Beyonce. It is, at its essence, classic Cleveland Heights, capturing all that we love about our school and our district.

Because it’s only every other year (just too much darn work for the PTA to do each year), we’ve only been to two prior to this one. And the first, held in January 2010, was quite a different experience for us. Braedan was in kindergarten, Austin was in treatment, and I was understandably absent from all volunteer activities at school. On this rare occasion, we left a severely immuno-compromised Austin home with a sitter so Mark and I could take Braedan to the big event. It was the end of a horrible week, in which Austin’s mediport had failed during our week of in-patient chemo and he’d had a surprise mediport-repair surgery (“Surprise!”) scheduled mere minutes after he consumed two grapes for breakfast (two grapes!), rendering him unable to be anesthesized for a full and excruciating eight hours. That particular surgery, which was supposed to be “quick” and after which we expected to go home, was instead long and unsuccessful and left Little A with a PICC line instead of a mediport and left the two of us in the hospital for yet another night. We were on edge, exhausted and beat down, by the time we arrived at the high school for the next night’s festivities. I don’t remember much about that particular show, aside from multiple tear-filled conversations with people who innocently asked me how Austin was doing.

But all of this is beside the point, or maybe it is exactly the point, because last night, four short (and very, very long) years later, Austin was up on stage doing this. He’s the first one to somersault toward stage left (your right) and is in the far right of your screen for most of the performance (or the front of the right line of dancers). Click the HD button in the bottom of the screen to get a clearer version.

https://www.facebook.com/photo.php?v=10153725590750162&l=1682386138915907952

And of course, we cannot let this review of the night go by without highlighting the brave and confident and funny and super cool Braedan, in his Cabaret jammies:

https://www.facebook.com/photo.php?v=10152539377551679&l=8507375228421995668

And now I can confidently look ahead to Cabaret 2016 and Cabaret 2018 and all the years after that.

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