You are currently browsing the tag archive for the ‘Rainbow Babies’ & Children’s Hospital’ tag.
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?
Look what I just found on the Hyundai Hope on Wheels website … a little video featuring moi. These are excerpts from the talk I gave back in September when they came to Rainbow as part of their drive across country during Childhood Cancer Awareness Month. The video is about five minutes long with my talk in the last three (cut down from a nearly ten-minute speech, which makes for some choppy transitions). It’s pretty good though; actually it made me tear up a little and I wrote the dang thing!
Plus there is a cute shot of clueless Austin sitting in my lap and making silly faces.
The CureSearch Walk was lovely. Thank you so much to those of you who came or who donated money to our team. Northeast Ohio raised more than $47,000 for the important research of the Children’s Oncology Group.
Last year, because the weather was so awful, people registered quickly, walked with their heads down against the wind and took off before the rain came. This year, on a gorgeous sunny morning, we had the opportunity to actually have a ceremony and what an emotional ceremony it was.
The event opened up with Steve Crowley, father of Olivia and co-chair of the Cleveland walk, saying these words into the microphone, “There are two things no parent ever wants to hear: Your child has cancer. And I’m sorry, but there’s nothing else we can do.” Well, the crowd of gathered families got quiet pretty quickly with that one. I’ve heard that first statement (three times too many) and hope to never ever hear the second.
He was followed by our own Dr. Auletta, proudly representing Rainbow, and then oncologists from both the Clinic and Akron Children’s, all repeating the same message: pediatric cancer affects too many children and families, is the number one cause of death by disease for young people, and is pathetically underfunded.
Then there was the balloon release. So we’re all standing around on the grass in front of the stage at Wade Oval and you can see this woman up there with a huge handful of helium balloons and you’re sort of wondering who’s gonna get to hold them and what they’re for (and you know the kids were all wishing they were for them), and then the MC invites up the families who’ve lost a child to cancer. And they slowly start to trickle out of the crowd, one or two at first, parents and grandparents and little kids who’ve lost their brothers and sisters, some individually, some in groups. And suddenly there’s this big crowd up there, much bigger than it ever should be, and Sarah MacLachlan’s Blackbird is playing over the loud speaker and it was just devastating, crushing (play the song before reading on if you really want to experience this). Everyone was crying as all those families slowly let go of their balloons (how many times must they let go?) and up they floated, a crowd of dead children in the air above us, hovering for a moment and then taking off with the wind until they were nothing more than tiny white dots in the sky.
And then, while I was still wiping the mascara off my eyes, they invite the survivors up to the stage. So I popped my sunglasses on my face and carried Austin up with the others. A line of children, some young, some teenagers, many with hair just growing in, plus one grown man — a twenty-year survivor — standing up with his own healthy children, received their survivor medals from Mayor Jackson, Austin hiding his head in my shoulder the whole time.
And then, the heavy moments behind us (in more ways than one), we walked, in front of the Art Museum and around the pond, now more interested in ducks and geese than chemo and doctors. Kids just being kids, running ahead, lagging behind, laughing and chasing each other. Families just being families, enjoying a beautiful summer day. Together. As it should be.
Just wanted to let you all know that the Rainbow Radiothon of the Children’s Miracle Network will be on air tomorrow and Friday on 102.1 WDOK, from 6 am to 7pm. We recorded a new miracle story for Austin about a month ago since this is a different radio station than the one that did his first story (and since his story has completely changed in the course of two years).
Wow, I just re-listened to that original story and it really is powerful (except for all the hoops you have to jump through to listen to it — I will try post a more direct link soon). And they could not have picked a better song. I hope I like this new one as much — I won’t hear it until the rest of the world does, which always makes me a little nervous. It’s extremely hard to take this three-year-long saga and break it down from a one-hour interview to a three-minute piece, while maintaining any sense of accuracy. That’s one of the reasons I was so impressed with the recent Fox 8 News clip — because they so perfectly captured Austin and his journey in just a few short minutes.
There’s nothing on the WDOK website yet but they did ask for a bunch of photos so they could run slide shows during the songs, so definitely check in over the next few days. Austin and I will head down to the hospital tomorrow for his afternoon of tests and appointments and will stop by the live studio for an interview, probably between noon and 1.
Should make the day a little more pleasant….
You know we’ve become mighty good at seeing the bright side of otherwise dark situations. It’s a survival mechanism, I suppose. So, we’re now looking forward to a “leaf peeping” trip, sometime in October. Still trying to find the perfect set of days, in between class pictures and field trips for the kids, a very unpredictable trial for Mark (as in, the jury should be able to decide this one pretty darn quickly, but common sense doesn’t always prevail. . .), doctors’ appointments, board meetings, and so on and so forth. Combine that with the fact that direct flights from Cleveland to Portland happen maybe once a week (and layovers with kids should be avoided at all costs), and we’re having trouble settling on the exact dates. But we will definitely go on this trip.
We are hoping (silver lining here) that either of our two sets of friends, one in Boston and another in New Hampshire, will be able to visit us during our newly planned getaway. Plus the kids will be more settled in their school routines (and more ready for a break).
Speaking of school, Austin finally started this past week, after a painfully drawn out orientation schedule for pre-schoolers (which I found brilliant Braedan’s first year, but now, in my fifth year as a preschool parent, I’m not so thrilled with). He is doing fabulously, by the way, so much more ready to separate from me this year than he ever was last. He is becoming more independent and talkative by the day, and is in an extremely happy place.
Braedan, too, is doing better. His complaining about school has quieted to the usual murmur, louder at breakfast when he’s still half-asleep and I’m nagging him to finish his breakfast, put on his shoes, get out the door. His teacher, if not exciting, is really quite nice, something he has begrudgingly admitted. He started tennis lessons at school on Tuesday afternoons, which is helping.
He will also meet with the psychologist at Rainbow next week for a one-on-one session. Mark and I met with her last week and we feel very fortunate to 1) have someone so readily available to help and 2) to have such a ready-made reason to seek help. I think most six-and-a-half year olds would benefit from having a grown-up to talk to, to help them learn how to express their emotions in a healthy way, to teach them skills for de-escalating anger or handling disappointment. In fact, I think most people any age would benefit from that. It’s not like they’re gonna sit around and talk about cancer for an hour; that just happens to give us a great excuse to get in the door.
So, all in all, things are fine. We have the wake tonight and funeral tomorrow; the kids will sleep at Mark’s parents since all the services are on the westside. They’re as happy about that as anything else. And Maine still stands, awaiting our arrival. Silver linings abound.
Did any of you see this sweet little bean in the Sun Press last week?
He was photographed in the game room at the Boneyard, during a fundraiser for Rainbow. It’s sort of a strange picture, I think because of the contrast between the dark room and the super bright flash. But what I like best about it (besides that proudly displayed — and dirty — hand bandage) is that it says he was “treated successfully” for cancer two times at Rainbow Babies & Children’s Hospital. I mean, if it’s in the paper, it must be true, right?
In other super exciting news, I just got a message from our wish coordinator at Make-A-Wish and she said that they have scheduled Austin’s treehouse to be built this fall and it should be completed by the end of October. Weather permitting, of course, (which you know, is never promising), but still, pretty exciting stuff . . .
Now off to sleep — Braedan’s first day of first grade tomorrow!
Many of you have commented on the appeal letter you received recently from Rainbow Babies’ & Children’s that was written by my mother. For some unknown reason, ours has yet to arrive in the mail but I finally saw the finished product when we went in today for labs.
It features a one-and-a-half page letter, along with an insert with the following photos:
Her letter, which was revised to fit a more formulaic template, originally started out with, “Of course, I wish my grandson didn’t have cancer.” She went on to say all the things she wishes were not as they are: bald Austin hooked to an IV pole to receive daily chemotherapy, her visits to hold him each afternoon that we’re in-patient, her worries as she mothers a child who worries and mothers a child with cancer.
But if this is our reality, she goes on to say, then at least we have Rainbow. After describing the extremely personal and expert care we receive from Austin’s oncologist, she continues, “I am grateful every day for the nurses who stay focused, positive and supportive while handling situations that require judgment, quickness and courage. I am grateful for the people who call Austin by name each day as they come in to mop his floor or collect his trash. I am grateful to be wished a nice day by every single staff person I encounter. I am grateful that Austin can jump on his bed and play with his little race cars — despite that darn IV pole. And on those occasions when he climbs into my lap and succumbs to a nap, I sit as still as I can for two or three hours if need be, so as not to shorten by one minute the joy of having him in my arms, still alive and with a hopeful future.”
There is much we wish were not as it is. But there is much we are thankful is just as it is.
Yesterday’s golf event was a total success. The weather turned out beautifully, after a surprisingly chilly start, and, as many of you already know, we did indeed end up on the news . . . twice. Betsy Kling was the MC for event (and also a golfer), so she did her 6 o’clock and her 7 o’clock weather forecasts from there and interviewed us both times.
On the 6 o’clock news, it was me and the boys (as Mark was still on the course . . . a golf widow yet again), and Braedan was definitely the star. They at first asked if Austin might talk about his experience but 1) he was too young to have any clear memories of it, 2) his speech is still in the very difficult to understand stages (sometimes even for us) and 3) he’s too shy to talk to anyone besides me and Mark and a few others anyway, so they opted for Braedan instead (who does not shun the spotlight, to say the least). We had talked ahead of time about the things he might say–that he’d go to the playroom and paint or use playdoh while Austin was in the hospital, and of course, he told Betsy about his favorite thing: the “window elevator!” Some of you may remember from back in the Carepage days how much Braedan loved the glass elevator in the parking garage at the hospital and how, when one of us was heading home with him for the night, he’d make us ride it up to the top floor where we’d get out and look at the sun setting over Lake Erie or the lights leading all the way downtown. This was always one of those moments when Mark or I would be beyond exhausted and just wanting to go home and crawl into bed after another long day at the hospital, but instead we’d be standing up there looking at that incredible view of Cleveland, and I was always struck by how small children manage to find beauty in life’s ugliest moments.
So, anyway, after Betsy did her forecast and talked to me briefly, she asked Braedan about what he used to do at Rainbow. And he froze! He was so mesmerized by the image of himself (in slight time delay) on the little TV in front of him, that he just stood there and gazed and looked pretty and said, “Uuuuuuuhhhhhhhhmmmmmmmm” until she finally asked about he elevator and then he perked right up! He started flailing his arms about imitating how quickly we could ride up and down, up and down, and it was so stinking cute.
See for yourself right here. You can fast forward through the weather part and start when there are just more than two minutes left (I think it’s like 2:07, not that I’ve watched this a million times or anything!).
Then, as the golfers were eating their dinner, I got to give a short speech about what Rainbow means to us. Mark and the boys were standing up there with me, making silly faces (not Mark) for the audience (in case I bored anyone). And after that, Betsy asked to interview just me for the 7 o’clock news and wanted me to use a few lines from my prepared talk. So I think I managed to incorporate them in a natural way, but I have yet to see this one because it’s not posted on their website. I’m hoping they’ll send me a link so I can post it here. Austin appeared suddenly at my side eating (and wearing) a frozen Dove bar, so I imagine that one is also pretty stinkin’ cute.
Oh, and there was an auction at the event and my dad (who is the guy you always wish to have at your auction) bought an item that will allow Braedan and Austin to be the “Bus Stop” kids on Channel 3. These are the kids whose video appears during the weather forecast and they’re wearing whatever you should put your kids in as they head to the bus stop the next day. So we’ll go to the studio downtown and they’ll take a bunch of different clips of them, either in snowpants and hats or raincoats and umbrellas, to play alongside the nightly forecast. The offer is good for a year so I think I’ll wait until Austin’s behavior is a little more predictable. But watch out, world, here come the Gallagher boys!
Just wanted to give you all a heads up that we are the honored family at today’s Rainbow Babies’ & Children’s Golf Classic, a major fundraiser organized by the Rainbow Foundation. Mark and my dad and brother are golfing (which has nothing to do with the fact that we’re the honored family — they would’ve found any excuse to participate!) and then the boys and I will go for the dinner and I get to give a little speech (my favorite thing).
Betsy Kling of Channel 3 news is the MC, so there’s a chance some of it might be covered on the 6 o’clock news on WKYC. If there’s anything signifcant, I’ll link it here, especially for those of you who aren’t local.
And then tomorrow, we start a new month, filled with many a milestone. Braedan will start kindergarten (wow), we take possession of the new house (yay), Austin will turn three and start preschool (on the same day), I have two articles being published in national magazines (yay again) and we’ll round out the month with another hospital stay and CT scan (yikes). Life is surely never dull . . .