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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.
You’ve read my words of praise for the St. Baldrick’s Foundation many times over (here) and have witnessed all my boys as they’ve shaved their heads year after year (2010 here, and here, 2011 here and here). What you may not have known is that each year St. Baldrick’s chooses five children to serve as “Ambassador Kids.” The chosen children represent different types of cancer, various ages, geographic, ethnic, racial and socio-economic backgrounds (since cancer does not discriminate), differing stages of treatment, and the sad fact that one of every five children diagnosed with cancer in this country will not survive.
Today, after months of keeping my big mouth shut (something I am so not good at!), I am finally able to publicly announce that Austin is one of the five 2012 Ambassador Kids. To be associated with an organization that does such valuable and necessary work (and in such a fun way) is an incredible honor, to say the least. And to have the opportunity to be a national face promoting research for this devastating disease is both inspiring and humbling.
Please read the St. Baldrick’s web announcement and visit Austin’s newly designed St. Baldrick’s page. And check out the rest of the beautiful photos taken by Tara Carmen of Carmen & Pugh Photography. And, of course, “like” St. Baldrick’s Facebook page to follow all the Ambassador Kids throughout the year.
Should be an exciting one . . . .
In this household, every day is a day of thanks giving. Not that it’s all hand holding and laughter around here (I say after sending the kids to their respective rooms so I can cook for five minutes without breaking up fights), but we are endlessly and eternally thankful for all that we have.
First and foremost, I am thankful that every time someone asks me how Austin’s doing, I can report that he is X months cancer-free (now nineteen) and can add, “the longest stretch without cancer in his entire life.” And I am even more thankful that each time I say it, he’s one more hour, day, week, month cancer-free.
I am thankful that, deep down inside, under the layers of resentment and rivalry, my boys love each other with intense ferocity (and that they still dress alike voluntarily!).
I am thankful that Braedan is earning a reputation as the boy who says Thank You.
I am thankful that both Mark and I still have both our parents in our lives.
I am thankful for a marriage that is, as marriages go, relatively easy: one filled with mutual respect and comfort and support and encouragement and laughter and love. And that in addition to taking care of the lawn and the shoveling, he’s also been known to clean the toilet or mop the kitchen floor, without being asked.
I am thankful for delicious food — yum.
I am thankful that I can do 100 burpies in a row without stopping. Ok, I’ve only done that once and I didn’t like it very much, but I’m still thankful I’m capable of it. (And if you don’t know what burpies are, be thankful for that!)
I am thankful for the extremely mild weather we’ve had this November. Yay for sunshine — we Clevelanders totally deserve it.
I am thankful for strong coffee, good wine and an occasional glass of cold water.
I am thankful to all of you who keep coming back and reading my so-called cancer blog, even when I focus more on the mundane aspects of parenting and home remodeling more than the life and death aspects of childhood cancer.
I am thankful to no longer share my house with an endless stream of random laborers.
I am thankful for dresses with pockets so I have somewhere to hide my insulin pump.
I am thankful that the voters of Cleveland Heights and University Heights stepped up despite tough economic times and supported public education.
I am thankful to have so many venues in which I feel comfortable speaking up. And I am thankful that my voice is often heard and listened to.
I am thankful for brothers who challenge me and love me, even if they don’t always agree with me! (Which is strange since I’m always right.)
I am thankful for friends to laugh with and cry with and share all of life’s important and unimportant moments with.
I am thankful that we have only spent one single night –and not even a whole one, really just a few ER hours — in the hospital over the past year. And I’m thankful that one day, I know we’ll be able to say we’ve gone an entire year without a single hospital overnight. (Austin deserves at least one year like that is his life.)
I am thankful for the scientific research, modern medical technology, and brilliant doctors who saved my child.
And I am thankful for the kindness, caring and love that saved the rest of us.
I am thankful for today, and I am thankful for tomorrow.
OK, we’re getting down to the wire here. The CureSearch Walk is this Saturday morning, starting at 9:30. (I think I said earlier that it was 9, but now you can get an extra half hour of sleep!)
We have a slowly growing team, now at 20-plus people. Not quite the 90 we had last year or the 50 I was hoping for, but I guess that’s what you get with a mostly healthy child (I won’t complain). If you still want to sign up, here’s the link. Once you agree to the waiver, click “Join A Team” if you’re an individual or “Register Multiple Walkers” if you’re a family. Then scroll through the team list to click Team Austin and proceed to register. They do ask for children registered, even if they don’t have to pay the fee.
The event should be quite fun: they have the Cavs dancers and Moondog there, plus face painters and jugglers and other kid-friendly activities. Plus the weather is supposed to be fabulous, which will be a welcome change over last year. And the kids always love to visit with the mounted police that roam Wade Oval. (And it will get the rest of us in the mood for Wade Oval Wednesdays … as if we weren’t already!)
If you’re coming, try to wear red, Austin’s favorite, to show team solidarity.
And if you can’t walk (or even if you can), you can also join our Kick It kickball teams for the June 10 Chagrin Falls event. Click here and then scroll down to Team Austin for 7-9 year-olds or Team Austin for 4-6 year-olds and click “Sign Up.” That registration process is super fast and easy, so you don’t even have to put it on your list of things to do later — you can finish it in the next 90 seconds.
Click, join, donate, walk, kick … make a difference.
Walk with Austin.
The CureSearch Walk for Children’s Cancer on Saturday, June 4 will raise awareness and critical funds needed for research into the prevention and treatment of childhood cancers.
While we all hear a lot about the advances made in cancer treatments, the truth is that for pediatric cancers, progress is painfully slow. Most national dollars go to adult cancers, and drugs and procedures then trickle down to kids. Sometimes this works fine, but it fails to recognize the impact of long term side effects on those who still have fifty or sixty or seventy years of life ahead of them.
I remember countless times when we were making medical decisions for Austin and his oncologist would list the potential side effects, things like heart failure or secondary leukemia, that might occur ten or twenty or thirty years down the road. We would worry and fret, wishing we had options, but his oncologist would always say, “You can’t worry about what happens in twenty years. You have to get to twenty years.” So we did what we had to and, while we are of course thankful for each moment we get today, he nonetheless has a lifetime of major health issues ahead of him.
It doesn’t have to be that way. It shouldn’t be that way. We must insist that doctors and researchers (and funders, both individual and federal) work in a way that guarantees progress. Currently only 5% of the budget of the American Cancer Society goes toward pediatric cancers. The same is true for the National Institutes of Health. Major nationwide fundraising activities, like Relay for Life (often hosted by high schools and colleges), dedicate less than 5% of their dollars to childhood cancers.
We can do better. CureSearch and the Children’s Oncology Group are the key to making a difference. They are conducting the research that may be too late to help Austin but could cure the child who is diagnosed today and another who is diagnosed tomorrow and another the day after that. All you have to do is sign up to walk on Team Austin on Saturday, June 4 at Wade Oval. Follow the steps I outlined here to make your registration as painless as possible. And make sure you join our team!
You may not cure childhood cancer. But you can take a first step.