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Sorry this is so last minute but I’ve gotten a few questions from confused Walk participants, so here’s the scoop.  The CureSearch Walk starts at 10am tomorrow morning at Wade Oval, right where Wade Oval Wednesdays happen (you won’t be able to miss it, I promise). If you plan to register once there, you need to arrive earlier (registration is from 9 to 10).  Then we walk around the pond in front of the Art Museum and strollers are welcome.  Following the Walk, there’s a ceremony, which was very moving last year.  The stated end time is 1:00pm, but I don’t ever recall being there that long, and Austin has soccer starting at 11 (with team pictures starting at 10:30 — not sure we’re gonna swing that one!).  You will be close to your car the entire time and are, of course, free to go whenever you choose.

In years past, we’ve all worn red, but Austin will be in his soccer jersey which is gray so that’s not much help (luckily, Braedan’s is red!).  A fair sized crowd shows up but it’s not like the Susan G Komen run or even like Wade Oval Wednesdays so you’ll be able to find us pretty easily.  And I’ll have my cell phone (come on now, when do I not?).

Thank you, friends! We look forward to walking with you. (And, you know, it’s not too late ... )

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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.

Well, it wasn’t quite the party extravaganza we had last year (I told you I couldn’t beat that one), but Austin did have a very successful Lego Mania bash on Saturday.

We managed to fit in both the Lego relay race (carrying Lego pieces on a spoon from one bowl to another)

and the Lego pinata (filled with Lego candy)

before the rain storm (um, I mean, hail storm) hit halfway through the party.

Then it was twenty rambunctious (and mostly male) schoolchildren running around the house.  We corralled them long enough for Lego-shaped crackers and cheese,

 

and Lego-shaped watermelon with grapes,

and (you guessed it): Lego cake

Then it was gift-opening time and I bet you’ll never guess what he got. Here are some clues:

What ever are we gonna do next year??

Yesterday was indeed another day. And a good one at that.

Started with an early morning Dunkie’s run by Mark (nothing like junk food at 8am to get the kids up and at ’em). Then off to school, with an end-of-Friday visit by Mommy and Braedan, complete with frosted zucchini muffins (not too junky, those) and a read-aloud by big brother to a class of cute and giggling kindergarteners. The whole event was tinged by a bittersweet encounter with a teacher’s aide I knew from my Coventry teaching days, who stopped me in the hallway with a hug and whispered in my ear how fervently she had prayed for this day.

His teacher using a magnifying glass to search for gray hairs.

More Lego gifts in the afternoon (god, I love how those keep them quietly engaged for such long stretches).  Then homemade pizzas with the Gallagher clan, more presents and the as-requested key lime pie.

Today, a couple of hours of soccer accompanied by Daddy (so Mommy can finish last-minute party prep and cake decorating), followed by hopefully sunny skies and a gaggle of excited school children eager for Lego mania.

And as I said yesterday on Facebook, not a single day goes by when I am not keenly aware of how lucky I am to have this boy in my life. It’s been a crazy, unexpected, awful, wonderful, unlucky and extremely lucky six years.

Happy 6th Birthday to my sweet love, the one and only Austin Gallagher.

. . . another hospital.  A new hospital this time, too.

Don’t worry — nothing bad happened. I just finally got around to making appointments for the non-essential, non-emergency, non-cancer-related issues that have been bothering Austin for the past six months.  First, those pesky tonsils.  Which don’t actually bother Austin at all.  I mean, he snores, loudly, but that doesn’t bother him. But we simply have to make sure he’s able to be safely sedated for any future procedures so today we visited an ear, nose and throat specialist at Akron Children’s (long story there, related to annoying health insurance issues, but I must say that even with an hour drive, Akron Children’s was very pleasant to deal with).

Then it was off down the hall to see the “plastics” guy. No, Austin’s not getting a new nose (his current one will have to do).  Remember the dreaded finger injury?  (God, how could we forget the dreaded finger?) It’s turned into quite a claw lately, which we’ve labeled the Franken-finger, and which causes him a lot of pain and discomfort. It’s always the little things . . .

Both doctors agreed that “quick” surgeries are in the books. Luckily, they will coordinate their schedules so we can wrap both procedures up into one surgery, likely over winter vacation (since, you know, kindergarten is the new first grade and the kid’s gotta be able to hold a pencil!).

It was relatively easy, but there’s something about hospital days that exhausts me. I think I’ve finally accepted that it’s not the actual day or anything in it that’s tiring (I mean, today was mostly spent on the freeway) but something much more psychological for me. Maybe it’s the reliving I’m forced through (multiple times) as I recount the date of each and every surgery and list the names of all the current and past medications and check the damn Yes box next to so many of the “Has your child ever….” questions, complete with the wide-eyed amazement of the nurse who unsuspectingly asked our medical history. I inevitably come home and feel completely wiped, like I’ve done something so stressful, and then have to, ugh, make dinner and, ugh, oversee homework. It’s a bit silly, I guess, but also completely logical. Ah, it’s always the little things. . .

But tomorrow really IS another day . . .

About this time last year, I wrote a couple of posts about helicopter versus free-range parenting, found here , here and here.  There must be something about the start of the school year and the intense focus on rules and safety that brings these issues to the forefront each fall, because I’m at it again. And now, a new term has entered our lexicon, and it’s not a good one: bulldozer parents.  No, they’re not knocking you over with stories and Facebook posts about how fabulous their kids are nor are they overtaking everything in their paths with their zealous parenting strategies.  They’re called bulldozers because they attempt to clear the paths in front of their children, removing any obstacles, dangers or hardships before allowing their little ones to travel on ahead.

We are doing no one any favors here, people. Kids — shocker here — are actually pretty smart: they can figure stuff out.  They can deal with hardship. They can be independent. And they must be forced to, in situations that are relatively safe and relatively risk-free, early in their lives or they’ll never ever be able to do it later when it really matters.  If we clear every bump and tree root from our kids’ paths when they’re eight, how on earth are they going to deal with bumps and tree roots and, god forbid, bears, when they’re twenty?

I was talking about this with a friend who works at a local university and she said she’s witnessed college students going in to their professors’ office hours to discuss a paper or grade accompanied by their mothers. Let me repeat that: she has seen college students, legal adults, old enough to fight in wars and vote in elections, who bring mommy along when they need to discuss something difficult with a professor! Hello? How is this person going to have a real job, with angry customers or clients? Or raise their own kids? Or do any of the tough things that are a part of grown-up life?

This post is driven in part by a recent reiteration of a long-standing district rule that states that only 4th and 5th graders can ride their bikes to school. I am working with a certain pro-bike city council person to get the district to change this rule and one of their stated concerns is that people backing out of their driveways in the morning won’t see small kids on their bicycles. Well, I don’t want my kids to get run over on their way to school, but guess what? I told them to look for moving cars in driveways as they ride. Just like we tell them to look for cars before they cross the street. And guess what? They do it!

I want my kids to be happy. And I want them to be successful. And, of course, I want them to be safe. But I also want them to be resilient and independent and to know what to do in difficult situations. And in order to gain those skills, they should have opportunities when they’re young to test themselves in relatively safe situations. If they’re walking to school by themselves and someone gets hurt, they should be able to figure out how to handle it: Is it minor enough that they can just keep walking and deal with it when they arrive at school?  Should someone turn around and run back home?  Is there a friendly neighbor whose house they can stop at? Figure it out, kids, use your heads and solve the problem.

If there is something they don’t like at school, a rule they believe is unfair . . . figure it out. Write a letter to your principal (our new one welcomes such student input), bring it up with a teacher you trust, organize your friends.  Don’t just stand around and whine, . . . do something.  If they can do these things now, in elementary or middle school, think of how much more capable they’ll be by the time they have to walk in to office hours (or battle) ten years from now. We may think we are helping them by clearing their paths, but we’re really stunting them and allowing them to enter adulthood completely unprepared.

And none of us want that.

I’m not going to keep harping on the start of the school year (I’ll have other things to harp about soon, I promise!), but here is the link to an article posted on the St. Baldrick’s site last week.  Which contains, as Mark pointed out, the best single line description of Austin’s personality to date. Enjoy….

Well, I changed my mind because I know a lot of you don’t ever click on links (I can see these things; the WordPress blogger is all-knowing), so here it is (no copyright laws are violated because I wrote the darn thing):

Starting Kindergarten After Battling Childhood Cancer

August 30, 2012 Starting Kindergarten After Battling Childhood Cancer

It’s that time of year again . . . the smell of freshly sharpened pencils in the air, the sound of school buses rolling down the street and the stack of paperwork for parents to fill out each evening. As I sit at my kitchen table completing the blue Who’s Eligible To Pick My Child Up From School form and the goldenrod Emergency Contact form and salmon Photo Release form, I am stopped in my tracks by the green Medical History form.

It’s nothing surprising, just your usual list of vaccinations and set of Yes/No questions: Has your child ever had heart problems? Seizures? Allergies? Surgeries? Kidney problems? Other? And then there’s my favorite: “If yes, please describe,” followed by one-and-a-half single-spaced lines. They actually want me to explain my child’s dramatic and life-threatening three-year illness in less than seven inches of space?

I don’t think so.

So, instead, I neatly write “Please see attached” and proceed to type up a 370-word addendum that describes in dry, emotionless language Austin’s diagnosis with bilateral Wilms tumor at the age of ten months, his four initial abdominal surgeries, his eight months of chemotherapy. Next paragraph includes his relapse, additional surgeries, twelve rounds of radiation, six more months of chemo. Last paragraph details his daily blood pressure medications and the restricted diet he follows due to the fact that he’s lost his entire right kidney and half of his left.

There. Done. Ready to repack his folder and send him off to kindergarten, a milestone we were never sure we’d reach. But nowhere in those myriad school forms did I truly capture my child. Any teacher who sits down to read those sheets would fail miserably to picture Austin in their mind. I can almost guarantee that they would imagine a sad, sickly boy, struggling to keep up with his classmates and opting out of gym class. Scarred and scared, feeble and hesitant.

There is no way they could conjure up the real Austin, the last kid you would ever describe as feeble, cartwheeling across the lawn, executing perfect front flips on the trampoline (or bed or couch), racing around the block on a two-wheel bike. No way would they picture this boy, spunky and clever, both brave and shy, extraordinary in so many ways, and yet so very very ordinary.

But I will let him go, with a heart both heavy and thankful, into the world of big kid school, where he can define himself. And I will know that those completed forms stuck in his backpack are only one tiny part of this truly remarkable boy.

 

Ah, fall, my favorite time of year.  It still feels like summer, of course (and still is summer, of course), but I do so love September. Fires in the backyard on cool weekend evenings, high school football games, and Childhood Cancer Awareness Month.

Yeah, it may not get the attention that October does, with pink ribbons exploding out of storefronts and tiny percentages of your lipstick purchase going to breast cancer research, but it is just as necessary and just as deserving of public notice.

I’m not going to drown you in all the stats (at least not today), but I will tell you what my family will be doing this month.

This afternoon, as soon as I pick up the boys from school (and show off my new haircut — pics to follow), we’ll drive out to Avon to give a talk at a golf event, raising funds for Rainbow Babies & Children’s. Tomorrow evening, we’ll tune in to the live televised Stand Up To Cancer fundraiser, an every-other-year favorite for us. I recently received an email that said that a photo I submitted of Austin might (key word, there: might) be used during the show. So tune in to ANY of the major networks on Friday and keep your eyes peeled.

I am also currently trying to get the Cleveland Heights University Heights schools to adopt St. Baldrick’s as their district-wide charity. I have pretty strong feelings about teaching kids the value of actual giving — as opposed to just bribing them with prizes and incentives, like the current Pasta for Pennies fundraiser does. But I’ll save that tirade for another day.

And on Saturday, September 29, our family will be walking — hopefully alongside many of YOU — in Northeast Ohio’s CureSearch Walk. Team Austin is still preeeeeeeeetty small, but I know a few people who could change that.

And if you ever wonder why this is all necessary, take a look at this image, posted recently on St Baldrick’s Facebook page, under the heading Why fight cancer?

The first day was a success.  Both boys came home beaming, happy with their friends and thrilled with their teachers.

Still smiling at 3:15

As we rode our bikes to the obligatory celebratory dinner at The Colony that evening, I asked Austin about the one boy I’d heard him mention by name.  “So, do you think you’ll be friends with Ben?”

“I already AM friends with Ben!” he shouted back.  After the bikes were locked and we walked out onto the patio to meet Mark, whose family should be seated at the very next table but Ben’s? The boys squealed and shouted and introduced each other to their families. I definitely think this little friendship is gonna work.

Unfortunately, the start of the school year for kindergartners is dragged out ever so slowly.  One third of the kids go on each of the first three days. And because they started on a Thursday  and because that Thursday was right before a long weekend, Austin still hasn’t been back!  He did wake up in the middle of the night last week and cry about how unfair it was that Braedan got to go the next day and he didn’t.  Let’s just hold on to that thought for as long as possible, kiddo.  Finally, tomorrow, he’ll have his second day of school.

But school or not, we were all sure to make the most of the last official weekend of summer. Another few days in Chautauqua with friends, spent waterskiing and tubing, hiking the caverns at Panama Rocks and roasting marshmallows well past bedtime.

It has been a good summer indeed.

 

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