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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.
Time to move on to the next big thing . . . St. Baldrick’s!
For those of you new to my blog (or for anyone who needs a refresher course in just how awesome people can be), check out these old posts to learn about the incredible St. Baldrick’s Foundation and the even more incredible men, women and children who shave their heads each year to raise money for pediatric cancer research. These are last year’s highlights: The I’m-Actually-Doing-This! Moment, “Great Things,” and Pride. And these are from 2012, the first year we held our own head-shaving event in Cleveland Heights: Noble, Heroes, Thank You, The Petri Dish, and Most of all.
I know, it’s only December (only December?!) but registration opened early this year so our 2014 event is live online and ready for shavees. We’re booked at the Cleveland Heights Community Center for Sunday, March 16 from 1 to 4pm. I might make it longer if we have too many shavees (a problem I’m willing to handle!) or perhaps add additional barbers. Whenever you’re ready, get on there and sign up your kids. . . or yourself. We will again be cutting and donating the hair of girls and women who have at least eight inches of not-color-treated hair to sacrifice (pas moi). That raised an extra $1,500 last year. And I’m really hoping to have teams from more and more schools this year. I know we’ll have a strong Team Fairfax, as well as one from Roxboro and hopefully Heights High and Gesu. I think Canterbury School will represent this year and maybe we can get Boulevard and Noble in on the action too (hint, hint). Shaker is ready to revive old rivalries as I expect serious teams from both Fernway and Onaway (and if you’re a member of tiger Nation, that should really get you psyched up to shave). There are a couple other exciting additions to our usual crowd of shavees, but I’ll reveal those a bit later.
Leading up to our event in the past, I’ve visited schools during the day and spoken directly to kids in their classes about childhood cancer, St. Baldrick’s and what they can do to get involved. This gets the kids plenty excited, but (being kids) they also tend to gloss over some of the important details and I inevitably get phone calls from confused parents, saying, “Uuuummm, hello? I was told to call you. My son says he wants to shave his head and I’m, like, okay with that, but I have no idea what for….” So this year, I think I should cut out the middle man/middle child and speak directly to the parents. If you have an interested group or even just a potentially interested group at your school, contact me and we’ll try to plan for me to attend a January or early February PTA meeting.
I’ve decided to go big and bold this year and raise our event goal to $60,000. The first year we made $37, 271 and last year $45,030, but I’ve had enough of this slow inching upward and am confident that this is our year. Heck, I think we could make $75,000 if we really got enough kids involved, but I don’t want to stress myself out trying to reach that goal. Each of the past two years, I’ve felt a surging panic in the weeks prior to the event, certain that everyone’s forgotten us, that they’re “over” childhood cancer and there’s no way we’ll reach our stated goal. And then the last week arrives and, with it, at least one thousand dollars in donations per day. We surpassed our goals in both 2012 and ’13, so I don’t see why we won’t carry on that tradition in 2014.
St. Baldrick’s is a fun and playful celebration, a beautiful way for people, young and old, to feel the power of making a difference. We laugh and spray our heads green and eat shamrock cookies. But it is also very serious work. There are thirty-seven children who will be diagnosed with cancer today. One fifth of them will not survive. Another two-thirds will live with lifelong health complications as a result of their treatment. This is not okay. We can change things. You can change things. Right here, right now.
At the end of last week, I was starting to get worried about our head-shaving event this year, feeling like we didn’t have enough shavees, no one was interested, it was a one-time wonder, yada yada yada. Then I had thirteen new registrations on Friday and Saturday alone. We are now up to 47 children and adults shaving and 3 girls cutting and donating, which is a few more than we had at this point last year. It’s still not too late (I did order a few extra participant t-shirts in an optimistic moment), but it’s almost too late so if you’re still signing up, do it today.
So I’m feeling pretty good about our number of people, but the number of dollars raised leaves a little to be desired. Actually, it leaves about twenty thousand to be desired! Last year, not knowing what to expect, I aimed low, with an initial event goal of $15,000. I quickly upped that to $18K, then $20, eventually $30 and finally settled on $35,000, which we surpassed. This year, I thought I’d save myself the hassle of editing the online goal and started high: $45,000. Well, we are currently at just over $16,000 and Monday I lowered the total to $35,000. Boo.
So, now I’m gonna lay on the pressure. This is serious business. This is the business of saving lives. Every parent of a child with cancer already knows the ugly truth about how other organizations use images and stories of children to do their fund raising, but give pathetically little to childhood cancer research or treatment. The esteemed American Cancer Society gave a mere 3.7% of its nearly 2 BILLION dollar budget to pediatric cancers in 2011. Now, I get that cancer affects a great many more adults than children and I, of course, support well-funded and rigorous research into all adult cancers. But I will refuse to give the ACS a single dollar until they stop prostituting photos of sick children, all in the name of opening donor wallets. That pisses me off. (Can you tell?)
St Baldrick’s is different. All they do, all they fund, is childhood cancer research. That is what they devote every second and every dollar to. And it’s research that is truly making a difference. We have St Baldrick’s fellows right here at Rainbow, making discoveries and treating kids every day. I’ve given you the stats before: how many kids are diagnosed, how many survive, how many don’t. But think about this for a moment: the treatments that kids receive today, Austin included, are developed with adults in mind. They’re intended for use on adult bodies, which are distinct and unique from the rapidly developing bodies of young people. The chemo agents Austin had pumped into his bloodstream for all those months were never meant to be used in a one-year-old. Or a three-year-old. So, by the time they hit age 30 or 40, 73% of the “lucky ones” will have a chronic health problem as a result of their treatment. And Austin will no doubt be one of the 42% of survivors who will be living with a severe or life-threatening condition. In fact, he already is.
The very medicines we give our children to keep them alive will most likely kill them.
That’s not okay. That’s not just an unfortunate consequence, the price we have to pay for keeping our babies alive. It’s unacceptable. And St. Baldrick’s knows it. And they are working tirelessly to change it.
And guess what? You’re not just an idle bystander, listening helplessly to bad news. You can actually do something. You can save a life. And be a hero. And all you have to do is shell out a few bucks. It doesn’t even have to be on the heads of my children; they’ve raised more than $1,600 apiece. You can give to some of the lovely and brave children who’ve raised just $15. Or to the female high school senior who’s shaving her head, and who I’m really hoping will hit the thousand dollar mark. Or to the young mom who’s so terrified that her children may someday have cancer that she figured she better do something about it right now. And so she’s doing something about it, right now.
And you can too.
One thing I forgot to mention in my last St Baldrick’s post is that I am indeed adding a Bobs for Baldrick’s station to this year’s event. Any girls (or boys) or moms (or dads) who wish to cut and donate their hair for wigs can sign up as a “volunteer” on the St. Baldrick’s site (our event page is here) and then raise money much as the other shavees do. Instead of going under the buzzer, these participants will get a beautiful haircut by either Shawn Paul or Laura Griffith of the Shawn Paul Salon, if donating at least 8 inches of hair. There are four organizations to donate the hair to: Locks of Love, the best known of these organizations, will accept 10 inches of hair, which is more realistic than Wigs for Kids, which requires 12 inches. However (and this is a pretty big however), Locks of Love only makes wigs for children, teens and young adults with long term hair loss. Now, that hair loss could be due to radiation for brain tumors, but is mostly caused by alopecia or scalp burns. A worthy cause, no doubt, but this does not include the kids with cancer that St. Baldrick’s is dedicated to keeping alive. Wigs for Kids does make wigs for children with temporary hair loss due to chemotherapy (but again, they need 12 inches). There’s another group, Pantene Beautiful Lengths, run by the shampoo company, that accepts just 8 inches of hair to make wigs for cancer patients, but from what I gather it’s mostly for grown women. And I just found another group, Wigs 4 Kids in conjunction with the Children’s Leukemia Foundation that will take ten inches of hair. Either way, I’ll have envelopes and forms ready to go for all three and people can choose the day of depending on how long their hair is and how much they’re willing to cut off.
Please consider this option if your hair is long enough but you’re not willing to shave it all off. You’d still be making an enormous statement, helping children with cancer in a tangible way and raising additional research funds in the process. Let me know if you want more information about how this will all work; there are lots of little details like that hair can’t be colored and must be clean and dry, etc etc.
And again, if you’re planning to shave, please register today. I hate to be nagging and pleading, but I need to send in my t-shirt and event supply order by this Friday and I can name twenty kids off the top of my head who’ve told me they’re shaving but aren’t yet registered. It only takes a few minutes and you’ll help put my mind at ease! But don’t do it for me. Do it for Jordan. Do it for Justin, who really really needs us. Do it for the nearly 400,000 children in the US battling cancer right now. You won’t regret it.
JORDAN’S STORY: When he was 16, Jordan was diagnosed with a very aggressive soft-tissue sarcoma. The doctor said, “We have your diagnosis. It’s alveolar rhabdomyosarcoma, and you will most likely not survive.” Jordan responded with strength and a sense of calm. He was the very definition of grace, courage and strength. After 23 months of treatment, Jordan passed away five days before his 18th birthday.
During treatment, Jordan found inspiration in the words of Atticus Finch in To Kill a Mockingbird: Courage is when … “you’re licked before you begin but you begin anyway and you see it through no matter what.” Jordan’s ability to accept his fate, yet continue to live his life with passion, hope, and unrestrained joy was astounding and courageous.
Read more of Jordan’s story.
Jordan is one of five St. Baldrick’s Foundation Ambassadors, representing the thousands of kids touched by cancer each year. Learn about how you can get involved to help children with cancer, just like Jordan.
I’m still here . . . just have been ridiculously busy, mostly with school-related stuff. Too many balls in the air right now, that’s for sure. But anyway, looking ahead to my busy winter season, I invite you all to start thinking about that other month in which childhood cancer is pushed to the forefront of the public conscience . . . March.
I will again be hosting a St. Baldrick’s head-shaving event for young people in our community on Sunday, March 10. I welcome the participation of any and all of you and hope that those kids who shaved last year want to do so again and have inspired their friends and classmates to join them. I’d been hoping to convince the counselor at Fairfax to adopt St Baldrick’s as our school’s charity for the year. Unfortunately, I discovered that the entire district has committed yet again to the Pennies for Pasta fundraiser run by The Olive Garden.
Let me vent for a moment about this particular effort, promoted heavily to schools through the restaurant’s marketing team. The monies ultimately go to the Leukemia and Lymphoma Society, a worthy cause no doubt. But, despite some valiant searches through GuideStar and Charity Navigator, I can find no reports on exactly how much of the money goes there and how much stays with The Olive Garden. Maybe I’m being cynical and maybe they just hand all the donations over for the greater good, but the very name Pennies for Pasta bothers me. The idea is that students bring in their loose change (pennies) and the class who raises the most money wins a catered lunch by the restaurant (pasta). Of course, the prospect of sitting down with table clothes and real silverware in the classroom is exciting for kids and everyone likes a little motivation. But it also teaches kids that you only give when you get something in return.
One of the things I love about St Baldrick’s — and that I think proves meaningful to young and old alike — is that there are no prizes. Sure, you get a t-shirt and a button, but that’s not the same thing (and those serve to promote awareness not just of the organization but, more importantly, of childhood cancer). Instead, the children who participate in these events learn that no matter how young they are, they have the power to make a true difference. They can sacrifice in ways that (some of) the grown-ups around them are unwilling to do. That’s quite a powerful realization: I can change the world, I have impact. Not because I found some spare change in my couch cushions and won a prize, but because I gave something real, a piece of myself, and expected nothing in return.
Of course, the truth is that these kids get a lot in return and for good reason. They feel like they’re part of something important . . . because they are. They’re celebrated in their homes and schools and local media for their bravery . . . which they display in all its glory. They’re praised by their teachers and classmates and friends and families as heroes . . . because they are. No noodles necessary.
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.
So much for biking, it’s time for walking.
The CureSearch Walk for Children’s Cancer, to be exact. Many of you have walked with us for this event before, although it’s been almost a year and a half since we last had that pleasure because they moved the date from May to September to coincide with Childhood Cancer Awareness Month. This year’s Walk will be on Saturday, September 29 from 9 to 1 (it’s not truly that long, but the timing includes pre-registration, the walk itself and the ceremony afterwards). I know it’s right smack in the middle of fall soccer season for the elementary kids, but I do hope many of you will be able to join us, even if just for part of it. The last one was very powerful, described here, and it means so much to all of us to see Austin and Braedan’s friends walking along beside them (and hey, I’m not asking you to shave your heads or anything!).
All the details can be found here and the homepage for Team Austin is here. It’s only $10 to register and free for anyone under 16 (needless to say, though, a small donation is deeply appreciated). Of course, I concentrate my fundraising efforts on St. Baldrick’s (more on that shortly), so I’m not asking for big donations or major fundraising campaigns from any of you, but that sea of red is a beautiful sight. Walk with us, if you will.
St. Baldrick’s season may seem like it’s over, but they’re not done raising money for pediatric cancer research. And now instead of shaving heads, they’re climbing mountains.
In 2010, Patrick McCarrick launched a new initiative called Climb for 5, in which mountain climbers raise money by scaling the tallest peak on each continent in honor of the five St. Baldrick’s Ambassador Kids. So in September of this year, a group of seven climbers will head to Russia to climb Mt. Elbrus, Europe’s highest mountain at 18,500 feet. I spoke with Patrick on the phone last week and he compared mountain climbing to cancer treatment, something I’ve done before myself, here after my run up Mount Cadillac. Each leg of the climb will be dedicated to a different child and they’ll carry something special of Austin’s to represent him. Since he doesn’t have a lovey or any single object that perfectly captures his journey, he and I are going to make the most fabulous ever wishing star to send up the mountain. (I offered to send Austin himself but they turned me down….)
You can learn more about Climb for 5 here or here. And you can still donate, either to the climbers in honor of Austin or to our very event. This year’s shavees and events can collect money through the end of this month. So far, St. Baldrick’s has raised more than $30.4 million dollars, the most ever, $36,000 of which came from our event. I’m so honored to have been part of the most successful season yet.
Here’s a link to an article I wrote for the St. Baldrick’s website, which was posted today. They had originally asked me to write something about the sibling aspect and the friendly competition we set up between Braedan’s and Austin’s teams. But that can be a bit of a touchy subject around here, especially as Austin’s team was both larger and raised more money than his big brother’s. Fortunately, Braedan hasn’t seemed to notice that, in part because their individual donations came out so close (thank you, everyone, for taking the time to split your money between them), but I didn’t want to draw any more attention to it than necessary.
So, I switched my focus long after the kids’ bedtime last night and here’s the piece, which I’m pretty pleased with.
There’s also an article written by one of the doctors at Rainbow, Alex Huang, focusing on his St. Baldrick’s-funded research. He was never Austin’s direct provider, but it’s a pretty small world over there so we’ve certainly known him over the years. It was really interesting to read his background and how losing childhood friends to cancer drove him into this career. And I love his closing line: “Most importantly, my personal involvement in St. Baldrick’s fundraising efforts affirms my commitment to pediatric oncology research every year, so I don’t ever lose sight of why I am doing what I do in the first place.”
And, at the risk of boring you all with my repetitive lines, here’s an article from the April Heights Observer about our event, written by — ahem — Mark (his wife was clearly referenced and quoted too often to be the author).