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When I was a freshman in high school, I took an introductory journalism course. That spring, a girl I’d known from my neighborhood went with the Heights instrumental music program on a trip to Asia, where she contracted a rare lung disease, which landed her in a coma upon her return home. She died on her sixteenth birthday. I wasn’t yet experienced enough to be on the official newspaper staff, but this girl and I had lived on the same street and had gone to the same school since our earliest elementary days, so when nobody stepped forward to write the article on her life, I did.
I sat in on the counseling sessions the school had set up for her friends, furiously scribbling down the conversations between her closest friends and her boyfriend. Then, accompanied by my mom because I must have been nervous, I walked over to her family’s house and sat at a picnic table in the sideyard to interview her parents and her younger brother. It was, to say the least, a fairly intense experience for a 15-year old, as I dug into their grief and then had to craft a story (with a strict word count) that captured all she had been to those who loved her. I was proud of the story I submitted, even though the one that was eventually published had been sanitized and read a little more news article and little less human interest.
But the significance of that experience is not lost on me as I’ve now spent years upon years writing about darkness and sadness in a way that I hope brings a sense of light and comfort to people.
Today, I was asked to write the article for the Heights Observer on Becca Meyer, who died on Saturday, less than twelve hours after turning six.
Sometimes, in our darkest days with Austin, when we thought he might not survive, I would wonder what my life would have been like if our second baby was conceived a day earlier or a day later than Austin had been. Or even a minute earlier or a minute later. What if I’d gone to the bathroom, gotten a drink of water, fallen asleep first and this child with these specific genes never came to be? Would we have been spared our great sorrow, our worst fears, his tremendous suffering? But every time I allowed myself to think that thought, it was immediately replaced by the full and unwavering knowledge that I would take Austin, with all his physical faults and with all the suffering that we did endure and that we may have endured. I would always still choose to have had him, even if it was only for a short while.
I have to imagine, that because Becca was adopted, her parents have had a similar and yet powerfully different set of what if’s to ponder. What if there was one family ahead of them on the list? What if some other child had been born on June 6 instead of June 7 and they’d been called for that one? What if her birth mother had decided otherwise? How different would their lives be? Would they be spared the unthinkable grief they now feel?
But I know without hesitation that if they’ve ever allowed such questions to run through their minds, they are immediately replaced with two unwavering truths.
One: They would always take the joy of having known this spark of a child, the gift of having loved her and been loved by her, … for the enrichment of their own lives, they would always choose Becca.
And, more importantly, two: If the child we knew as Rebecca Alison Meyer was destined to be in this world and if it was written in her genes or in her stars that cancer would claim her life, then who better to entrust her short life to than the Meyers? Who better to surround her with love and laughter and friendship and all things princess than Kat and Eric, Carolyn and Joshua? Who better to hold her, guide her, sing to her, dance with her, kiss her and love her than the family she was given? How lucky were they to have been given the incredible honor of shaping the course of her too short life? How lucky were they to have had the opportunity to fill it with so much joy? How lucky was she?
Loving her so well and loving her so much may well be the greatest burden of their lives. But I do not doubt that it is also their life’s greatest blessing.
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.
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.
Six years and three weeks ago (exactly), I sent out an email to friends and family informing them that Austin had been diagnosed with cancer. I was upbeat and hopeful, providing as many details as I could in that moment, all tinged with a misplaced sense of optimism for what we were about to endure.
My inbox was flooded almost immediately with replies conveying that same hope and optimism, all telling me that we would beat this, we were so strong, Austin was lucky to have us as parents to guide him through this, blah blah blah. Everyone meant well and I thoroughly appreciated their words, but after a while, the messages all blurred into one. Except for the singular and unblurrable response from my college friend in London, which read, “Fucking hell, Krissy, this fucking sucks.” And I laughed and I cried and I saved that message in cyber-eternity because it was the only one that captured what I was really feeling, what my heart knew but my mind couldn’t yet accept: this fucking sucked.
I have used those words many times over the past six years and three weeks . . . too many times, in fact. I have handed them over with as much kindness and comfort as I could muster to a friend whose mother was diagnosed with cancer too young. And another whose daughter was diagnosed with cancer too young. And to the friend who deserved the words most of all after her daughter was killed in a freak accident. And the woman whose husband died of a heart attack after an evening bike ride, leaving her a widow with three young children.
And then I used them yet again, just a few days ago, in a message to a woman I’ve known since Braedan was just a few months old, whose five-year-old daughter, about to start kindergarten at Fairfax, was diagnosed with a brain tumor instead.
Because, fucking hell, what else can you say to that?
I’m not going to tell you their whole story because the husband/father is doing that himself here, so eloquently I’m almost embarrassed by my own blabbering vulgarity. But not so embarrassed that I’ll stop, because if you think I’ve used harsh words before, they’re about to get harsher. I’ve been following their story pretty closely over the past week and have read through all the comments that appear on both parents’ Facebook pages. And they’re filled with hope and love and fervent fervent wishes for the best possible outcome. They are lovely and moving and raw and I’m sure bring some small but necessary bit of strength to the parents. But they are also filled with a falsehood, with a piece of conventional wisdom about illness that gets bandied about as if it’s undeniable truth and it is not.
It is this: that love will conquer all. Time and again, I have seen well-meaning people tell their downtrodden friends that their sick family members will survive because they are loved. Love will save them. Love is more powerful than anything, even, say, cancerous tumors.
I used to like this idea. I believed it and lived it myself the first time through. This was something I could do. I could love Austin back to health, that was one thing I could control. I distinctly remember strolling him outside the hospital one October night, mere weeks into our years-long journey, and thinking that my pure longing could actually save him, that my intense wanting, my unbreakable desire to keep him alive would do just that. And then I realized, with a jolt to my heart, how wrong I was.
Because they fell like dominoes around me. Those children who were nothing if not loved. Ashlie, Ariana, Emily, Seamus, Dylan, Olivia. Did I really think that if their mothers had wished a little harder, if their fathers had loved with greater intensity, if their circles of friends had prayed more frequently or more fervently, that those children would have somehow survived? That is not how it works. Love isn’t enough. It helps; it makes the long days and weeks and months more bearable and much more pleasant. But it doesn’t save lives. It would take you mere minutes with Ariana’s mother to know that her love should have saved a small country’s worth of children. She loved her daughter beyond measure. And Seamus’ parents . . . are you kidding me? There could be no bigger love for a child.
But it didn’t matter. Because it’s not love that saves. And goodness knows, it’s not lack of love that kills (nice message to send to those parents, huh: if only you’d. . . ?). It’s not a question of worth or value or who deserves what. Because every parent deserves to send her sweet child off to kindergarten healthy and whole. And every five-year-old deserves to go.
So, no, it’s way more random than love. It’s just luck. Plain old luck, good or bad. Which is way out of our control.
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.
Austin had his two-and-a-half year scans today.
He went briefly to school to partake in the Grands Day celebrations, but I picked him up at 10:30 and we headed down to Rainbow for a long day of procedures. First an EKG and ECHO, because he needs clearance from cardiology before his December 7th surgeries (tonsillectomy and finger repair — more on those next week). Results from both were fine: The VSD that marked our first step towards diagnosis more than five years ago still exists but is so tiny that it poses no threat at all. The enlargement that caused concern during his second round of treatment is less pronounced, probably because his blood pressure is as normal as it’s ever been. His heart is functioning fine and, while we need to continue monitoring it well into the future, there is no current worry or need for action or cause for concern.
Then it was time for abdominal ultrasound, always the most significant test of the day. But that too was normal, no changes from last time, the ol’ inappropriately labeled “unremarkable” exam. Then a chest x-ray, which I haven’t actually seen results for but we’ve never had any real reason to worry about cancer metastasizing to his lungs.
And then it was off to see Dr. Auletta in the out-patient clinic. After labs and a quick physical exam, he sat talking with us and reflecting on the day he’d had so far (more on that tomorrow). Ever conscious of respecting patient privacy, he nonetheless commented that today he’d seen the “clinic of miracles.” The kids and their parents who happened to walk through the doors today were the remarkable one, the lucky ones, whose stories could have ended quite another way.
You know, a lot of children diagnosed with cancer in the twenty-first century have excellent prognoses right from the very beginning. Of course, it’s still a big deal and still terrifying for their families (all you hear on Day One is “Your child has cancer” and nothing else quite makes it through). But the doctors who see those kids on their very first days know, that as long as nothing goes horribly wrong, as long as science works as it’s supposed to, they’ll be alright. (Austin was actually in that category for about one day.) And then there are others who the doctors know, despite all they may hope and despite how hard they end up trying, that they won’t be alright. And then there are the kids in the middle, whose cases are tricky, whose cancers are unpredictable, but who still present with a shred of hope. They need a hell of a lot of work, they need vicious medicines and endless care and a ferocious internal fight. But those are the kids who can become miracles. And Dr. Auletta saw them today.
Austin among them.
Childhood Cancer Awareness Month is quickly coming to a close and I feel as though I haven’t done my awareness-raising duties. So, here’s my please-come-walk-with-us-this-Saturday push, as published in The Heights Observer:
Krissy and Mark Gallagher, also of Cleveland Heights, are participating in the Walk for their five-year-old son Austin, a two-time survivor of kidney cancer. “Austin has lost his entire right kidney and half of his left to cancer,” explained Krissy. “He’s had 10 surgeries, 13 months of chemotherapy, 12 rounds of radiation, and has spent hundreds of nights in the hospital. Despite all that, he’s one of the lucky ones. Because he’s alive. Until we can say that for all children diagnosed with cancer, our work is not done.”
And that’s just it: Our work is not done.
Childhood cancer remains pitifully underfunded, with only 4% of dollars raised by the American Cancer Society going to research for pediatric and young adult cancers. That’s why our work isn’t done.
No new chemotherapy drugs have been developed specifically for childhood cancers in more than twenty years. That’s why our work isn’t done.
Austin’s cancer story, featured here in the first newsletter for the parent support group In It Together, is sadly not unique. But instead starts anew for nearly 40 families every single day. That’s why our work isn’t done.
Earlier in the month, following the fabulous Stand Up To Cancer telethon, there were many Facebook statuses that read, “I stand up for. . .” I commented on one, listing the names of eight children: Austin, Ariana, Ashley, Dylan, Olivia, Abby, Seamus and Emily. Afterwards, I sat back and read over my list and realized that only two of them, including my own Austin, were still alive. Two out of eight. That’s why our work isn’t done.
Please join us for the CureSearch Walk on Saturday, if you can. Stand with us. Walk with us. Because our work isn’t done.
I’ve finally uploaded all of Dallas’ pictures to a Kodak Gallery, found here. I have more to add from both Mark’s and my dad’s cameras. The cool thing about these public galleries is that you can all add your photos to the one album and then we’ll have a huge array of images to look at and choose from to represent that very special day.
Also, I finally received a link to the piece on Fox News. There are actually two, one from last Sunday and another from this past Friday that has our event intermingled with the A.J. Rocco’s and U.S. events. (U.S., by the way, has passed us by, having raised a total of $46,365 with 65 heads shaved. Oh well, it was all in honor of Austin and it all goes to the best place. But … next year!). The clip of our event (the second one down) is sort of silly because the cameraman picked the worst possible moment to interview me, right between introducing people and while Breadan was shaving (which I completely missed). But I’m pretty sure I had done a fine job, explaining St. Baldrick’s and the value of raising money and awareness and so on, when he asked me how this all makes me feel. How does it make me feel? Well, you can see my jumbled response! I was trying to say something about Leah, because she had just finished shaving and the shock and awe and emotion of that moment was still fresh in my mind. But I got sidetracked and first mentioned Kristi and finally ended up looking over my shoulder to catch a quick glimpse of Braedan and whatever I said after that is laying on the cutting room floor.
Oh well, I guess they captured true emotion.
Speaking of true emotion, Saturday was another really special day. Just really … special. These past five years of being involved with St. Baldrick’s has made St Patrick’s Day into a pretty significant holiday for our family. And this year, with the boys being the national face of the head-shaving campaign, that significance has only grown.
We headed downtown into an extremely crowded and party-like atmosphere in the mid-afternoon. AJ Rocco’s was as crowded as ever, if not more so. We pushed out way through to the back where we gathered with family and friends and climbed onto a bench so we could watch the festivities from on high.
Finally, it was our turn and we pushed and shoved and squeezed our way to the stage in the corner. Mark and Kirk and Jay were all shaving together, with special permission granted to Braedan and Austin to help with Mark’s shearing. I love this photo below as the MC announced that it was us on the huge poster on the wall:
And then they began. Braedan, naturally, hopped up and grabbed those buzzers and happily started shaving Daddy. Austin, naturally, hung back in my arms until watching his big brother have all the fun made him jealous enough to brave the crowds and he too scooted into Daddy’s lap and took his turn. Once they got started, there was no stopping them.
I have moments, every once in a while, when the enormity of all we’ve been through hits me like a ton of bricks. All the years of fear and worry, of calling the hospital “home” and of waiting through eight and ten hour surgeries, of poking and sticking my poor boy’s battle-scarred body, of never knowing what fresh horror the next day might hold. And it came crashing down around me, right then as I felt so overwhelmingly relieved to watch my two healthy children shave their father’s head, so incredibly honored to have them represent this very special event the whole world over.
Now, some of you may say, “That’s great, let the feelings come, don’t hold back.” But really, standing in a crowded bar on a holiday in the middle of downtown Cleveland is neither the time nor the place to really break down. So I shed a few tears and choked the rest back and took a lot of pictures and cheered them on, so full of pride and amazement at how we’d come through, so grateful for all the love and support we felt and still feel around us.
And then it was over. They were done and stood up to show off their nicely shaped domes. Then it was more beers and sending the kids home with their aunt and take-out so we could spend the rest of the evening celebrating.
There was one other moment worth mentioning though. As you might imagine, bringing your kids into any downtown bar on St Patrick’s Day in Cleveland is risky business. And while A.J.Rocco’s has given our city a huge gift by hosting this event over the past ten years, it is, nonetheless overcrowded with post-Parade partiers. Most of the people were there specifically for St. Baldrick’s, but some had undoubtedly wandered in off the streets. And while mine were not the only kids there, they were among just a handful. So, as we were waiting our turn, tucked away in a corner, this one woman walked by a few times and shot some very dirty looks in our direction. Later, as Mark was watching one of our nurses shave her head, with Austin perched on his shoulders, this woman leaned in to say, “He shouldn’t be here.”
Oooh, man, I wish she’d said it to me because I’ve been fantasizing about what I’d have said back ever since Mark told me. But my husband, Mr Cool and Collected, just calmly replied, “You’re gonna regret saying that in about ten minutes.” She clearly had no idea what was going on there that day.
Because of every one of the hundreds of people squashed into that narrow little bar, Austin deserved to be there most of all.
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.