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I just got my event planning package in the mail from St Baldrick’s today. I eagerly opened the box and found my three beautiful boys looking back at me, several hundred times over. I received fifty posters and 1500 pocket brochures, every one of them featuring this image:
This is the picture, taken at last year’s AJ Rocco’s event, that is printed on the cover of millions of pocket brochures and thousands and thousands of recruiting posters AND, perhaps most exciting of all, on the huge banners that will hang behind shavees at every event across the country. I have yet to see one of those but I can only imagine how moving it will be.
So, here’s the task I propose to all of you, especially those readers who live in other cities and states: Well, no … wait, first things first. Please, if you’re planning to shave or if your child is planning to shave, (which is probably more likely), please do register online. The sooner you register, the more money you’ll raise and the more money you raise, the bigger difference you make. If you need a little extra motivation, I suggest scrolling through the images featured on St Baldrick’s Facebook page — they really capture the immense pride of shavees and the emotion (and fun) of these events. Here’s Team Braedan and here’s Team Austin.
Second, if you simply can’t bring yourself or your child to do it– which I totally get (no need to apologize!), please consider making a donation on the heads of one of my boys: Braedan here and Austin here (better yet, please take the extra few minutes like you did last year to split your donation neatly between them).
And now, for my challenge: Send me pictures! If you are out and about, anywhere at all, and you see one of those posters, PLEASE snap a picture of yourself in front of it and send it to me. I would love to have a collection of images from around the country featuring the three most beautiful bald men I’ve ever seen.
It takes all of us ….
I’m sure many of you heard the quick clip on NPR the other morning about Theodor Geisel (aka Dr. Seuss)’s road to publication. It was, for me, extremely timely and another example of being in the right place at the right time.
Dr Seuss had finished his manuscript for And To Think That I Saw It On Mulberry Street about a little boy imagining what he would tell his father about his disappointingly uneventful walk home. He had submitted it to twenty-seven publishing houses, all of whom had summarily rejected it. He was walking down the street in New York City, ready to toss the manuscript and try his hand at another career, when he happened to bump into an old acquaintance who happened to work in publishing who agreed, probably out of a weary sense of obligation, to look at the work. And, well, the rest is history.
Just think for a moment of a world without Dr. Seuss. Sure, you could say he’s just another talented children’s author, but he was also quite revolutionary. He tackled issues of racism (The Sneetches) and environmentalism (The Lorax) long before it was popular to do so. The Lorax, for one, has stood the test of time; as relevant a creed for anti-consumerism and environmental protection today as it was forty years ago. He made reading cool (I Can Read With My Eyes Shut) and gave students everywhere something to reach for and dream of (Oh, The Places You’ll Go!).
So, I imagine that boy, the one from Mulberry Street, standing instead on the same street where some unknown named Theodor Geisel stood chatting with some other unknown, two boring men in suits engaged in a brief conversation. And that little boy would have looked away, searching for something more exciting, more remarkable to witness, never realizing the magic of what was happening right before his eyes.
Our weekend was fabulous. I could save myself some time and just repost last year’s description, which we pretty much repeated, down to the walking, shopping and eating.
But I’ll grant you a few minutes and go through the details of the actual conference.
First of all, my mom and I were both heartened to discover so many repeat attendees from last year. I think we’d both been a little worried that going back again meant we had somehow failed: we were the losers that ended up being rejected by the agents after all that hard work and here we were, groveling at their feet yet again. But right away at the first session, we started to see people we recognized and several mentioned as they asked their questions to the panels that this was their second visit. (And of course, the conference organizers announced proudly that four conference attendees from the past few years have found representation thanks to the Pitch Slam. FOUR. From the last SEVERAL YEARS. Well. Not sure whether to feel relieved that I wasn’t the only one not picked up or completely discouraged that we’d spent all that money and invested all that hope in something that won’t likely lead anywhere.)
But, it is still so rejuvenating to be there, thinking and listening and talking about nothing but writing. I loved it. It had a few ups and downs though. Friday evening, at the end of the last “Perfecting Your Pitch” session, the moderator asked for brave souls to present their pitch for a very public critique. Well, I was feeling very confident and somehow imagined that I could wow him (this man whose entire job is critiquing pitches–critiquing as in criticizing), so I quickly got in line and stepped up on stage to repeat my memorized lines into the microphone in front of 400-plus people. And he just … well, he just didn’t feel it. He wasn’t harsh or anything, but gave me some generic suggestions that certainly didn’t come across as the praise I’d been imagining in my head. Within a mere eight minutes of my moment in the spotlight, the whole session was over and my mom and I rushed out to meet a friend for dinner, never hearing any feedback from the assembled crowd.
And I was completely deflated, suddenly unsure of what I would say the next day or how to present my work with the same pride I’d had in it a half hour prior. (I know, I need a thick skin for this industry, I know.) I tossed and turned through the night, finally sitting up at 3am to announce to no one and everyone that I’d figured it out. I had a new ending in mind that I liked and was again ready to go.
And as soon as I walked into the first session of Saturday morning, I was met by strangers complimenting me on my story, asking how Austin was, saying they’d teared up and thought it was wonderful. I said to one that I was discouraged by the moderator’s response, even though I knew he wasn’t my target audience (he did say in his critique, “Well, I don’t have any kids, so I don’t know what that feels like”) and she said that she was sitting right in front of him and thought he had gotten emotional after hearing me and covered up his discomfort by being extra unemotional. Now, I’m not sure that’s exactly what happened but it did feel good to have the praise of my colleagues.
So we sat through several morning sessions, all interesting but still only a prelude to the big event of the afternoon. Finally two o’clock rolled around and we formed our long and jittery lines outside the various ballrooms for the equally dreaded and coveted Pitch Slam. And again, just like last year, it was fantastic. I loved my pitch, loved it (I gotta admit, he did nudge me along to improvements I may not have otherwise made). But I stood in some very long lines and saw only seven agents, the exact same number as last year even though it was an entire hour longer! (My mom, by comparison, saw eleven agents over the six she saw last year.) They all asked for my work except one, who was very complimentary but she’s repping a writer whose memoir about his son’s death from cancer is due out soon and she didn’t feel it would be fair to him to take on such a similar project.
One asked for my entire manuscript (the one I’d referred to last week and the one whose line was so damn slow) and another asked for my strongest six pages (NO ONE does that; they all ask for the beginning of the book, either ten or thirty or fifty pages, no one allows you to choose which pages so that ought to be fun).
Of course, as an experienced Pitch Slammer I know that this doesn’t guarantee anything except a read (which is pretty big on its own) but I really felt like I connected with the agents. And like I said last week, it only has to work once. I only need one single agent to like it. So I’ve been furiously revising yet again (I swear, I thought it was done) and plan to send stuff out by the end of the week.
First of all, we are pretty set for St. Baldrick’s. I have three fabulous Registrars — somehow that job was a lot more appealing to people than the Treasurer position. Mark has agreed to serve as Lead Treasurer and I think I have a back-up, but will gladly accept more help in that department. I need to have my letter to schools approved by St. Baldrick’s and I will start emailing them out next week, so please let me know if you cam bring materials to your child’s school and drum up some interest. And of course, we now need shavees and donations. Team Braedan is here and Team Austin here. The sooner people sign up, the more money you’ll raise.
Shifting gears (something I do at least ten times a day): A repost from last January, as I was preparing for my first Writer’s Digest Conference, and always a good reminder:
Alright, let’s see if I’m ready.
Cape, tights, superpowers? Check. (Thank you, Chris, for reminding me to pack those.)
Well-worded oral pitch that clocks in at 87 seconds (thanks to some careful revisions) and that makes me giddy with pride? Check.
Well-researched list of agents, ranked according to best match for my work? Check.
Carefully chosen outfits that are both comfortable enough to wear all day and yet appropriately stylish? (Hey, you gotta look good.) Check.
Three-plus years of hard work, hopes and dreams? Che….
Wait a minute. The product of my three-plus years of hard work, hopes and dreams (and blood, sweat and tears) is staying behind. It’s here, this family, this house, this home. Two mostly healthy, mostly happy, remarkably normal children and one super-strong marriage.
My mom and I are going back to the Writer’s Digest Conference in New York City this weekend!
It was sort of a last minute decision that started two weeks ago when Mark asked me if we were planning to go again. “Oh, no, “I said, “Not again.” Why not, he asked. “Oh, people don’t do that twice . . .” Why not, he asked again. “Weeeell, uuummm, I don’t know.”
So, after checking to make sure he wouldn’t mind being the sole parent all weekend (“I wouldn’t have suggested you go if I minded, honey”), I brought it up to my mom and, over the course of one conversation, we got so increasingly excited about the possibility of going back again that we couldn’t even imagine not going.
This is the conference, of course, with the much-coveted Pitch Slam, for which we were so nervous last year. This time, with the great benefit of experience, we are able to strategize in much smarter ways. I’ve been carefully studying the agents who will be there (there are only a few repeats, so that’s not a worry) and have focused my attention on those with more years of experience in the industry. Over the past year, I’ve heard from several young, new agents who’ve told me my work is compelling and well written, but because they lack experience and are still forming relationships with publishers, my type of memoir would simply be too hard for them to sell. It’s not hard for an agent to pitch a young adult paranormal vampire romance to an editor, but it is hard to say, “I know, another cancer memoir . . . but trust me, this one is good,” unless they’re pitching to someone who actually does trust them. So I’ve found a few women with twenty-plus years in agenting, one of whom said in response to a question about the most frustrating aspect of her job, “Those rare moments when you find a book that’s absolutely amazing and editors agree that it is, but feel that the market for it is too limited for the book to be commercially viable in the current economy! Argh! Then I just keep my head down and keep plowing until I find someone willing to take the risk. As I mentioned earlier, those books often turn out to be successes far beyond what anyone expected.” Now that’s the kind of agent I need!
I’m also going to pitch to at least one male agent (who said, “Voice and story can carry a memoir, even if the author doesn’t have a platform”), which I haven’t done in the past. I tend to think of the target audience for my book as mostly female, but I’ve had some of my positive reviews from men, one an editor at Writer’s Digest, one a published novelist and university English professor, and a few other early readers and critiquers.
Having gone through the Pitch Slam last year (and having survived!), I think we’ll also have a completely different — and more realistic — set of expectations. I remember being so afraid that no one would ask to read my work and then thrilled when the first agent invited me to send her ten pages. I thought I’d struck gold! It was only in the hallways and elevators afterwards that we discovered that everyone had been asked to send in their work by almost every agent. This is how the Pitch Slam works — they simply say yes . . . only to say no later. So this time, I’ll have a more level head. I’ll see this is an excellent way to get my foot in the door and then will hope, that with a combination of good writing and the right agent, this will actually happen.
It only has to happen once, after all.
Since the outpouring of potential volunteers has been — ahem– rather slim, let me calm your fears. Neither the Treasurers’ nor the Registrar’s jobs will take much of your time prior to the actual event. I will do all of the necessary communicating with shavees in the days and weeks leading up to the event, making sure they’ve completed the proper paperwork, encouraging their fundraising efforts and so on. You would just need to study your list of responsibilities beforehand and then be prepared to work one long and tough day. The Registrar will basically be sitting at a welcome table signing people in, making sure that everyone under 18 has a parental consent form signed and an official shavee number assigned to them and the like. The Treasurers will need to be able to quickly separate out the various donations people bring with them the day of the event (although, like I said, most donations are made ahead of time online). St. Baldrick’s provides very specific instructions and forms and envelopes for each type of donation (cash, check, general donations, donations to teams or individuals, etc) and each thing needs to be properly identified and filed. I am happy to take on the bulk of the responsibilities before and after the event, but know that on the day of, I’ll need to be emceeing and overseeing the entire enterprise. Oh, and (a bit of extra pressure now), the Foundation won’t mail out our promotional materials (and just wait until you see who’s featured on them!) until we have at least one Treasurer registered.
And now, for the fun stuff: For the last two years, Braedan and Mark have shaved as members of Team Austin. Well, we’re having a Beatles moment and this year they’re splitting up. Braedan would like to form his own team of friends and classmates, so if you count Braedan among your pals, please consider registering for Team Braedan. And Austin is also hoping to convince many of his friends and classmates to shave alongside him as members of the latest incarnation of Team Austin. Mark will be shaving the following week at AJ Rocco’s for Team Gallagher and already has several members of the 2010 team, including one woman, considering signing up again. I am sure we can encourage a bit of friendly (I hope!) familial competition around this one, so pick your favorite Gallagher and hop to it! I promise, your hair will grow back . . . .
I figured we better put all this media attention and celebrity to good use. After years of bemoaning the fact that there wasn’t a good alternative to the very adult event at AJ Rocco’s, I’ve decided to host a St. Baldrick’s head-shaving event specifically aimed at kids and teens.
Mayor Kelly has graciously and enthusiastically offered us the use of the Cleveland Heights Community Center on the afternoon of Sunday, March 11, one week prior to the big event downtown. St. Baldrick’s provides a huge amount of support but, in order for this to be a success, I need YOU.
Here’s the scoop: I need two people who would like to serve as Treasurers. I have a document I can email to you if you’re interested that lays out all your responsibilities. Almost everything can be done from your home computer leading up to the event and then you’d be responsible for collecting any cash or check donations on the day of the event. (People are strongly encouraged to donate online prior to the event itself, which eases up the burden on the Treasurers and is the most efficient and cost-effective for St Baldrick’s.) You would need to complete an FBI background check, but it’s all done online and is a piece of cake (honestly, you just enter in your birth date and social, no fingerprints or anything). I also need a Registrar, who would be responsible for registering shavees prior to and on the day of the event (but I will help out enormously in that regard). Whoever takes that job also needs a background check. The lovely ladies from Cut Studio on Lee have agreed to serve as volunteer head-shavers, so you know you’ll be in good hands.
If you are interested in either of the above roles or just in helping out in general, please let me know and I’ll forward you all the necessary materials. St Baldrick’s has been running these events for twelve years now and they make the process as easy as possible. I’m sure there will be lots of little jobs in the days leading up to it, including things like baking cookies or buying bottled water. If you have any fabulous ideas about how to make this a fun family-friendly event, I welcome them. I’m going to reach out to Flower the Clown to see if he’ll donate his time to make balloon animals for the kids (unless someone knows him well and wants to take this on).
I also have letters ready to go out to all the public, private and parochial schools in Cleveland Heights, Shaker Heights and University Heights. Children and teens from anywhere in Greater Cleveland are welcome, but I’m starting with a manageable area where I have lots of natural contacts. If you want a letter to give to your school counselor or PTA or anyone else you think might be good at rounding up shavees, leave a comment here or on Facebook and I’ll forward you a copy.
And of course, the most critical component of the day: we need SHAVEES. We need brave young souls willing to go bald to stand in solidarity with all the children who lose their hair during treatment. I know it is a big commitment (one I am shying away from myself), but kids, and especially teenage boys, are the perfect participants (they’re so much less vain, you know). Feel free to form a team, either from your school, sports team, youth group, neighborhood or even family. Teams can have as few as two members or as many as you can recruit. Shave in honor of a child battling cancer or choose one off the St Baldrick’s website (Austin, of course, is available to be honored by any and all!). If you’re a grown-up thinking about shaving, please register at the AJ Rocco’s event on the following Saturday, following the St Patrick’s Day Parade downtown. That is a fabulous event that raises more than $200,000 and I don’t want to draw anyone away from it (we’ll definitely be there). But if for some reason, you’re unable to attend that one or if you still fall into the “youth” category (or know someone who does), please consider making this huge and public statement on behalf of kids with cancer.
To register, please click here.
As St Baldrick’s says, it takes all of us to conquer kids’ cancer.
Here’s the link to last night’s coverage. I gotta say, they did a pretty nice job. Except that part about us living in East Cleveland!
Austin was a bit disappointed with the editing process though and kept asking to watch “the rest of it.” Turns out he was making funny faces at the camera that somehow never made their way to our television screens. He thought there should be a fox on Fox News, roaring at the audience. Alas, the producers must not have agreed with him.
First things first, watch Fox News at 6 tonight to see me and Austin down at the hospital today (what is it with me and Fox News? I guess they’ve never checked my voting records!). Thanks to his role as a St. Baldrick’s Ambassador Kid, he is becoming quite the little celebrity! As soon as I get the video clip, I’ll post it here for those of you who live out of town (or only surf the blogosphere after-hours).
And now, the real first thing first: Today’s results were all good. Well, not exactly all good (keep reading), but good in the ways that matter most. His kidney function is holding steady, which is fabulous. His CT and ultrasound show no change to his lungs, kidney or liver . . . also fabulous. There is no indication of any cancer anywhere inside his body. So, in terms of Wilms tumor, Austin is healthy as can be. And in terms of kidney function, he is as healthy as can be expected.
But (ah, the dreaded but), there are some other troubling issues. Only slightly troubling, mind you, especially speaking in relative terms. The radiologist thinks that the liver looks like it’s “coarser” than in the past. Not anything inside the liver (that old spot has remained unchanged since August 2010), but the make-up of the liver itself. He just felt like it looked . . . different. Vague, I know. Dr. Auletta wasn’t sure what to make of this either, especially since Austin’s liver function is and has always been normal.
The other thing is that there seem to be some . . . stuff in his stomach. It could be calcium build-up from all the Tums he takes to bind out the phosphorous in his diet or adhesions due to all the surgeries he’s had (not a terribly unusual side effect of being cut open and manhandled that many times). They did recommend doing an upper-GI test, just to see if there’s any action we need to take before an actual blockage occurs. I’ll learn more about all of these things in the next few days after the various doctors on Austin’s team are consulted and a formal report is issued.
All in all, it’s fine. What matters most is that there’s no cancer and a still-working kidney. But, as I said to the news reporter today, two-thirds of the children who survive their cancers live with long-term health problems as a result of their treatments. The very things that made Austin better are now the very things that can make him sick. We know that his cancer story will never be over, even if the cancer itself is gone. He will never actually be the normal kid he appears to be.
But, hey, we’ll take him, abdominal adhesions and all.
Sometimes it’s hard to get back into that old mindset . . . that old cancer mindset. I had two other, completely disease-free topics I was going to write about today, and then I doubled checked my calendar and was reminded that Austin has his 20-month scans tomorrow.
Twenty months . . . now that’s a significant chunk of time in the life of this small boy, who has battled cancer two and a half times in the past four-plus years. Twenty really really good months, of health and happiness and growth and energy and normalcy. But tomorrow we’ll go back to the hospital, after Austin makes a brief appearance for his first day back at school (which should give me just enough time to run and shower). He’ll have his regular bloodwork to check his kidney function, followed by a chest CT to look for possible metastasis to the lungs and then an abdominal ultrasound to look at the kidney, pelvis and liver (another favorite site for Wilms tumors when they decide to move around and, of course, the current home of that mostly unidentified “fatty tissue” we’ve been watching for the past year). Then a follow-up with his oncologist to go over the results.
The whole thing should last about four hours, with a break for picnic lunch thrown in and quite a bit of exercise moving from the sixth floor of the cancer clinic to the basement of another building and back again. If all goes well — which we certainly expect (not that our expectations mean anything in this game) — he’ll be free again until the end of April, when we have his eagerly awaited two-year scans. Those are the gold standard, although we are well aware that they will give no guarantee that his cancer will never return. Nothing will give that guarantee. But they will mean that he has reached a critical milestone and that the chances of his Wilms tumor recurring are extremely small. The two-year mark will also mean that, should his kidney fail, he can then be eligible for transplant without dialysis (or without too much dialysis; sometimes the time between failure and actual transplant can take some months due to many many factors, not the least of which is identifying the actual kidney that will go into his body). But those are discussions for another time.
For now we have this to buoy us onward: A neighbor of my mother’s attended an event at the hospital recently in which the Chief of Pediatric Oncology was talking about the importance of research and how it directly impacts patient outcomes. He presented three case studies as evidence, one of them about a boy named Austin with bilateral Wilms tumor (say, that reminds me. . . ) who he described as “cured.” I asked my mother several times if she was sure that was the exact word that was used and she was very very sure. “He said ‘cured,’ Krissy. That’s the whole reason Ann stopped to tell me about it.”
Cured. Well, that’s not a word we allow ourselves to use too often. Never, in fact, have I referred to Austin as “cured.” But after tomorrow, and after April, maybe we’ll just have to change our vocabulary. And our mindset.