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Ah, what a difference a year makes. Last Mother’s Day was not so good. I mean, the weather was nice enough that we were able to go on our annual picnic and hike. But the cloud that hung over my heart at that moment, the horrible certainty I carried in me that this would be my last Mother’s Day with two children, could not be lifted.
Yesterday, on the other hand, was cold and rainy and we didn’t really do much (although staying in your pajamas until 1pm is pretty special), but it just doesn’t matter. I don’t need intricately planned outings or lavishly wrapped gifts to celebrate being a mother. A pile of school-made cards and two sweet boys snuggled up beside me as we wiled away the morning reading Harry Potter in bed is more than enough. (And bacon and eggs — thanks, Mark.)
But the icing on the Mother’s Day (oooh, now that’s a good idea . . . Mother’s Day cake) came Friday afternoon with our visit to Austin’s oncologist. Confirming all that I’d reported two weeks ago, his chest x-ray was clear and his kidney numbers hold steady. So, we can now say without hedging that Austin is truly and officially three years cancer-free, 60% of the way to the other, much more pleasant C-word.
Since his new doctor is still learning his case, she showed me an email she had requested from a member of Austin’s team at Rainbow, providing a broad overview of his five-and-a-half years of care. Much of it was formal and technical but I scanned quickly, with Austin quietly Minecraft-ing beside me, searching for any hint of editorializing. Maybe a little clue of his future or a confirmation of what we’d believed was, well, a pretty big deal. And it was there: “Austin has had an impressive and complicated course of treatment since his initial diagnosis in July 2007.” Impressive and complicated, indeed.
Today, we just use word “impressive.”
So, I should probably expand a bit on last week’s ultrasound posting. It is indeed slightly premature for me to declare that Austin is three years cancer-free when we have yet to see his new oncologist (who we met for the first time in February) or to receive an all-clear regarding his lungs. All of that will happen at the end of next week, when we visit the Clinic for labs and a chest x-ray. But, since his lungs have always been far down on the list of things we worry about and since the abdominal ultrasound is what has revealed anything and everything suspicious or dangerous over the past four years, we nonetheless feel pretty darn good with last week’s news.
It’s funny how this one crept up on us. This three-year mark. So unlike last year’s anniversary, for which there was so much anticipation and excitement, all of it dashed with that horrible May 7 appointment. And then we plunged into that surreal in-between world, filled with only fear and dread but no answers or action. I do much better when there’s action. When I can see the mountain in front of me, even if it’s absurdly steep, I’m able to gear up, draw upon my strength and plan out exactly how I’ll scale it. But when it’s only fog I see, only vague warnings about a pending cliff or a jagged slope with nothing concrete or real, then I’m paralyzed. Last May, I felt paralyzed. Terrified beyond anything in memory (and there’s been much terror to remember). I had no idea what we were facing, couldn’t even begin to plan our attack — but I felt certain something was out there. Something deadly was lurking there in the fog, waiting for us to pass, waiting for him. And I was paralyzed.
Of course, it all passed as nothing. Those sixteen days a mere post-script to our crazy story. And I find myself back again, in the very same place I was when I wrote this on May 6 of last year, the night before his faulty “something” scan.
And I’ll say it again, with a slight edit to the number: Come what may, it’s been a damn good three years.
We are at that time of year, as we are so often are, that is filled with milestones and anniversaries. Some of them are good, some bad, all tinged with reminders both subtle and glaring of where we’ve been and where we might someday end up. Last Wednesday was Austin’s kindergarten musical performance, not an obvious cancer milestone in anyone’s life, but filled with significance nonetheless. It should go without saying that there is just something about watching five and six-year-olds go through a song and dance routine, all waving their arms slightly off rhythm, scrunching up their faces and waving to their parents one minute, the perfect image of mature composure the next. All coupled with their eager filing from risers to stage to recite their carefully rehearsed but poorly enunciated lines, and the whole thing is just adorable to the point of tears.
But for us, it also stood in stark contrast to Braedan’s kindergarten musical three short — and very very long — years ago. That day, way more dramatic than this, is described here. And let me tell you, it was not as easy as I made it sound in that rather upbeat review. It was instead filled with a lot of anxious clock-watching, as I wondered if I would yet again break the heart of my elder child in my desperate attempt to keep my younger child alive. So it was with enormous relief that we watched Austin sing his songs and wave his hands and recite his line (inappropriate though it was for a child who can’t pronounce his Rs): “And you would be right, with most of those terms . . . You see, ladies and gentlemen, we are the worms!” with no pending hospital visits, no Sophie’s Choice decision looming in our near future, no fear of what the next day, week, month might hold. Instead, it was all sweetness and pride, worms and snakes, and even Braedan and two other older siblings were invited to provide comic relief in the form of cheesy bat jokes.
Austin on my lap three years ago
Austin last week, ready to perform
Austin on stage, reciting his line
Braedan on stage (far right), reciting his line
And if anyone is really paying attention, you’ll notice that Austin was wearing the same shirt last week that Braedan wore to his kindergarten show. We, of course, went to the Colony for dinner that night but I have no pictures of grilled cheese-induced ecstasy.
But, if you want a real milestone, a truly significant, did-it-again milestone, here it is, hidden in the midst of this post about a school concert . . . Austin had an abdominal ultrasound today. We opted to do it back at Rainbow, even though his new oncologist is at the Clinic, because only this particular radiologist knows what to expect from his crazy misshapen kidney. So we’ll have an additional appointment in a few weeks, with a chest x-ray and labs and a physical, but for now, from today’s scan which looks at his kidney and liver and is the thing that really matters most to us, Austin is three years cancer-free. Yes, that’s right. That’s what I snuck in here at the end of this silly little post. AUSTIN IS THREE YEARS CANCER-FREE. Ka-pow.
Ok, so that was an unintended hiatus. I guess blogging is sort of like exercise in that the longer you go without doing it, the harder it is to ever start doing it again. Anyway, here’s the post-St Baldrick’s wrap-up I started writing a full three weeks ago.
Another St Baldrick’s season has come to a close. St. Patrick’s Day was great, as always, even with the shift in time and the cold gray weather. Mark is bald once again, time number eight if you count the two at-home shaves he did prior to Austin’s first and second rounds of chemo. This time he was joined by our friend Sagi, who had a serious head of hair:
(Mark’s sacrifice wasn’t quite so big….)
The morning after St Patrick’s Day, I attended a breakfast at Rainbow with the CEO of the national St. Baldrick’s Foundation, as well as the St Baldrick’s-funded research team at Rainbow (almost all bald) and the organizers of all the local events, which totaled eight and raised over $495,000, making Cleveland a force to be reckoned with in the world of pediatric cancer research. I should mention that our little Cleveland Heights event is hovering a mere $540 below my grand goal of $45,000 and is in fifth place in the state of Ohio for dollars raised.
It was very inspiring to hear Kathleen speak and to be surrounded by so many other people putting their hearts and souls (and hair) into this cause. She talked a lot about the changing face of research funding in our country given the economy and how bleak the prospects are for the coming years, mentioning that the St. Baldrick’s board of directors would really like to transform this once unknown organization based on the crazy idea of a couple of guys from a 33-million-dollar-a-year bit player into a 100-million-dollar-a-year big time player. This is, of course, wildly ambitious and will take an enormous effort on behalf of all the St. Baldrick’s foot soldiers around the country, but I do believe it can be done. And I believe it must. And I believe that we, right here in Cleveland and right here at the Community Center, can help make that happen.
I will come calling . . .
Pride gets a bad rap. You know, being one of the seven deadly sins and all. I don’t really get it (I’m not anti-lust either, but we don’t need to go there). I mean, I see how pride can be a negative, if you’re excessively proud without good reason, if you’re proud of the wrong things (your looks, your wealth, your power). But I also see pride as an appropriate reward for doing what’s right and as a motivator to do what’s right again.
Those kids — and adults — who shaved their heads last week were proud of themselves. Deservedly so. They should feel pride; they earned it. Their pride will be one of the reasons they come back and do this again next year. Or it will spur them on to take other forms of positive action in the world.
I felt proud when Braedan told me I “do great things.” It didn’t make me want to sit back and rest on my laurels; it made me want to do more great things, if for no other reason than to show my children the impact they can have on the world.
Pride is beautiful too; especially when it shines innocently on the face of a child who has just discovered an empowered sense of self or on a parent who has watched their baby do something big and wonderful. Just look at these:
Here’s another boy who should be mighty proud of himself. Spencer signed up a mere ten days before the event and managed to raise $1,180 without a single donation over $100. Fifty-three different people contributed on his head. Fifty-three! What an incredible show of support that is. (And what a lot of Thank You notes he has to write!)
And then there’s this guy, probably the proudest of the bunch. And with good reason. In the four years that Braedan has shaved his head in solidarity with his brother, he has raised an incredibly impressive $13,153 for the St Baldrick’s Foundation. Ponder that for a moment. $13,153, . . . from a child. No wonder he looks like this:
Even the smallest among us can feel pride. One of my favorite St. Baldrick’s moments this year happened two days after the event, when I received a surprising text from my sister-in-law. My nephew Hill, who was still two on Sunday but has since turned three, announced at the dinner table Tuesday night that he wanted to shave his head too, like his big brother and cousins. Up went the family, straight to the bathroom for the clippers, and what emerged is our youngest-ever (and plenty proud) shavee:
And here’s another thing to be proud of. For every single person who shaved their head or every single person who donated a few bucks, this is for you:
And moments like this:
So hold you heads high and be proud. You deserve it.
I should start by saying we have now raised $43,291, including the checks I mailed today (which won’t likely show up on individual shavee pages for a few weeks). Which means that we are a mere $1,709 away from my original and very ambitious $45,000 goal. Which also means that if every one of the 75 shavees raised just $23 more, we would reach that goal. Twenty-three dollars! Let’s do this, people.
More pictures and more stories: We had a lot of school teams this year, which is exactly what I want this event to become and what I hope drives our numbers up even higher in the future. Fernway School in Shaker, home to two preschool buddies of Braedan and Austin, fielded a team of ten kids and one dad and is poised to grow by leaps and bounds next year.
There were also five kindergarten students from Gesu who shaved, many of them for the second time.
And then there was the Heights High team (of course, one of my favorites), the Buzz Buddies. This one was spearheaded by a girl, a 17-year-old senior who shaved her head clean bald. I have to admit, these are the ones that get me the most, because it’s something I would never have been brave enough to do as a 17-year-old girl. I was gusty (still am), but not that gutsy (still aren’t). So I watched in awe as Katy raised significant sums of money and rounded up five of her (male) friends to join her and then hopped into that chair without a second thought.
And of course, there was a Team Roxboro, another personal favorite. This one was captained by our sweet friend Charlie who, as a first grader, has raised more than $2000 in his two years shaving, and was joined this year by his uncle.
And there was the hard-to-beat Team Fairfax, with fourteen students and one mom (who cut and donated). I think it’s safe to say that it’s cooler to be bald in that building this week than not. And I can pretty much guarantee that their academic performance has improved now that they can see the board. Just look at this shaggy-haired bunch of ragamuffins:
I have still more to post tomorrow, but in the meantime, check out this photo gallery.
I had my own hero moment on Sunday afternoon, an all-this-work-over-the-past-few-months-planning-organizing-scheduling-emailing-promoting-reminding-pleading-prodding-begging-nagging has been worth it kind of moment, when we got into the car to go home and Braedan said, “Thanks, mom. You do great things.”
Thank you, thank you, thank you. To everyone. To all of the hundreds of people who donated money on the heads of our shavees. To our tireless barbers from Quintana’s and Shawn Paul for putting everyone at ease and working without complaint in such good spirits for so many hours. To Mike Kenney who entertained the kids with juggling and balloon art. To all of my friends (including both my mom and my honey) who volunteered their afternoon to check people in, collect cash and checks (tougher than it sounds), sell baked goods or take more than 1,500 pictures (Dallas was a busy woman!). Thank you to everyone (I have no idea who) who baked those yummy looking treats, which brought in an additional $220. And of course, the biggest and most enthusiastic THANK YOU to every man, woman and child who shaved their head or cut and donated their hair.
As of this moment in time, we have raised $43,101.71. Yup, that’s right: seventy-one cents. I wasn’t kidding when I said every penny counts. And the total continues to rise online. We may reach my original $45,000 goal after all.
That is really something. Really really something to be proud of, for all involved, certainly not just me. And more than anything, everyone should be proud of the very brave souls who climbed into those barber chairs and allowed strangers to shave their heads completely bald. It is not a small thing to do. It is a big thing, even for the men with little hair. Even for the littlest kids who don’t care what they look like. Especially for the women and girls who do. It is a serious and powerful statement to make to the children currently battling cancer. And to all those who love them.
I’m only gonna mange to tell a couple of the stories tonight, so you’ll all have to check back tomorrow. But let’s start with the father-son team who went head-to-head in a heated battle to see who could raise more money. The younger won (ah, youth always wins, doesn’t it?), by about $80, but together they raised more than $6000. Now that’s a competition we can all support.
We don’t actually know them all that well, but when asked why they shave, the father simply said, “We do this for Austin.”
And then there was Erica, who emailed me out of the blue a few months ago asking if women could join our event too. “Sure,” I told her, knowing women generate lots of buzz (and donations!). She wasn’t the first or only woman to sign up, but I could tell from the beginning that she was serious about this. She was driven, as I mentioned in an earlier post, by an intense fear that one of her young children might one day have cancer. And like a true hero, not one spurred into action by disaster that’s already struck, she saw this as an opportunity to do something before she was ever impacted. To do something right now. And boy, did she ever. Erica raised more than $3000, taking the coveted first place fundraising spot for our event. And she did it with courage and grace and beauty.
Isn’t that such a great shot?
There were so many more fabulous parts to the day but a picture is worth a thousand words and I have a few hundred pictures, so I’m going to add some more here and then post again tomorrow, including about a mother-daughter team and all the CHUH kids. I’m still working on a public photo gallery on Flickr, but it’s not quite ready. For now, I’m inspired by this image that was posted on the St Baldrick’s Facebook page last week:
And here are our very own, “Oh my god, I’m actually doing this!” photos:
And with those slightly stunned, pretty excited and damn proud faces, I leave you. But only until tomorrow, I promise.
In light of the extraordinary fundraising prowess of our more than 70 shavees, I’ve decided to raise our event goal from $35,000 to $40,000. We are currently at just over $33K and the money keeps rolling in. I’m convinced that with everyone’s last minute push (plea) for donations coupled with the cash and checks people will bring with them tomorrow and the eventual matching gifts from the workplaces of our donors, we can do this.
To give you a sense of just how successful people are being, my two boys have each raised more than $2,000 and they are only in 4th and 5th place for our event. That means that five people have raised more than $2,000! Another five have raised more than $1,000 and there are a few more pushing the door on the $1,000 mark.
Yesterday, the 14 students from Fairfax School displayed their St Baldrick’s pride with green hair (which was sort of funny considering at least half of them were participating in the school spelling bee!).
Thank you to everyone for your generosity supporting my Braedan and Austin and all their friends and classmates, year after year, as they shave their heads. We will not stop doing this. And I am so grateful that you continue to stand alongside us as we do.
And now, know anyone who could use a haircut??
We are in our final days before the clippers start buzzing and the hair starts flying. And the ticker on our event page showing how much money we’ve raised keeps moving moving moving ever closer to our goal. Our 60 shavees and 5 hair donors are now at over $25,000 and seem to be raising more than $2000 a day!
But of course, that’s not fast enough and it’s not beyond me to make one final push on behalf of my children. They are each about 75% of the way towards their $2500 goals and with just a few extra donations could reclaim their first and second place fundraising spots. Braedan’s page can be found here and Austin’s here. I know there are many children you all know who are shaving so if you’d rather put that money down on someone else’s head, that’s perfectly fine — it all goes to the same place, after all. But, while I know it seems easier to just give a general donation to the event or to a specific team, the kids really do love to see their own dollars raised go up. So if you could just pick one, even one you may not know, especially if they’ve raised very little, and give in honor of Austin or your school or anybody you wish to acknowledge, that would make the kids feel so special.
There have been a few really sweet things that have come out of this experience, as always. The little brother a shavee handed over some carefully saved up bills to his mother and was concerned about how to split them up among all the kids he knows who are shaving. His mother assured him it was easy to divide that twenty (doesn’t look easy to a 6-year old, of course) and took the time to make small donations on the heads of about six or seven Fairfax kids. The kindergarten teacher of a preschool friend of Austin’s highlighted how this child’s sacrifice reflected the IB learner traits of being caring, risk-taking and principled. She sent this message home to parents and the following day, all the little students brought in handfuls of change and crumpled bills to donate.
There’s also a father-son shaving team engaged in a head-to-head (get it?) battle to see who will raise the most money. They are both well over $1,500 and a mere $25 separates them as of this posting. If the father wins, the son has to clean his room. And if the son wins, he gets to write on his dad’s head with a permanent marker. I don’t know about you, but room cleaning seems mighty boring so I’m rooting for the son.
And tomorrow, I will go to Fernway School in Shaker to speak to their kindergarten and first grade classes about cancer and St. Baldrick’s in honor of that school’s shaving team. Then in the afternoon, I get to speak with the three kindergarten classes at Fairfax, which is really something because not only is Austin allowing me to do such a thing, he actually asked for it! And on Saturday morning, the preschool/day care center of my nephews Van and Hill is hosting a pancake breakfast to raise funds for St Baldrick’s. So, yet again, we are moved and touched by the broad community support we’ve received so far.
And now, there are just four days left. If you’ve been planning to make a donation, NOW would be a fabulous time to do it. And if you want to bake treats for the bake sale, just let me know. I’m requesting St Patrick’s themed goodies, but anything will do.
Of course, you are all welcome to come and cheer on our shavees on Sunday afternoon. We’ll be at the Cleveland Heights Community Center from 1 to 4 pm and I guarantee you’ll have fun and be plenty inspired. Heck, you might even decide to hop in the barber’s chair yourself!
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.
