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You never quite know when inspiration will hit you. For me, it came last weekend as I scrolled through Facebook on my phone while waiting for my shower to heat up (gotta stay connected, you know). A friend and fellow Fairfax mother posted a photo of her 5th grade daughter chopping off her long blond locks to donate to be made into wigs. This girl happened to be in Ms. Glasier’s 4th grade class last year when she shaved her head for St. Baldrick’s and I have no doubt that her heroic act was inspired at least in part by the heroic act of her teacher.
Which got me thinking . . . I certainly don’t want to discourage anyone who might be willing to shave their head this year. Nor do I wish to discount the significance of a truly bald head, which is, indeed, significant. But, I also know there are a lot of girls and young women whose friends and brothers shave and who come to the event and wish there was a way for them to get involved, but who just aren’t ready to go all the way. I get that. I too have toyed with the idea of shaving — every March 18, I am convinced I’ll do it the next year, but as those 364 days dwindle away, so too does my willingness to shave.
So, I think I’m going to set up a station at our March 10 event for girls to sign up for major haircuts. They can register online at St . Baldrick’s just like the boys do, but instead of saying they’re shavees, they’d be listed as volunteers. Then on their homepage, they could describe what they’re doing, which organization they’ll donate their hair to and request contributions from their friends and families for St. Baldrick’s. Everyone benefits: St. Baldrick’s raises more necessary funds for research into childhood cancers, people who need free wigs, get them and the girls themselves feel empowered and engaged.
First, I’ll need to make sure this is okay with St. Baldrick’s, because I don’t want to dilute the impact of those who are actually going bald. I don’t really think it would and I certainly encourage anyone who might be even considering the full shave to really seriously consider it. But we’re talking about people who most likely would remain on the sidelines if this option wasn’t available. Then I need to check in with my barbers to make sure one or two can dedicate a bit more time to actually giving real haircuts as opposed to just the quick buzz. And then, perhaps most importantly, we’d have to figure out who to donate hair to.
This is a trickier issue than I at first thought. I’ve done a bit of research and am surprised at what I found. Locks of Love, the best known of these organizations, will accept 10 inches of hair, which is more realistic than Wigs for Kids, which requires 12 inches. However (and this is a pretty big however), Locks of Love only makes wigs for children, teens and young adults with long term hair loss. Now, that hair loss could be due to radiation for brain tumors, but is mostly caused by alopecia or scalp burns. A worthy cause, no doubt, but this does not include the kids with cancer that St. Baldrick’s is dedicated to keeping alive. Wigs for Kids does make wigs for children with temporary hair loss due to chemotherapy (but again, they need 12 inches). There’s another group, Pantene Beautiful Lengths, run by the shampoo company, that accepts just 8 inches of hair to make wigs for cancer patients, but from what I gather it’s mostly for grown women.
There’s nothing wrong with any of those efforts, of course. I’m all for women getting wigs and, obviously, those with permanent hair loss would be more likely to want wigs than those with temporary hair loss. But I do want whatever I offer to be appropriately aligned with childhood cancer patients. Hmmmm, thoughts welcome. Let me know if your daughters (or you) might consider participating in this way. And then, let me know if you have an opinion or preference regarding which organization to select. Actually, this is silly. Each individual donor could choose their own organization depending in large part of how much hair they have to give. We can have the envelopes and donation forms from each group at our event and each girl could decide in that moment. And the money they’d be raising ahead of time would be for St. Baldrick’s so it wouldn’t really matter where the hair went.
Alright, that was easy! Our event is now live online and although I haven’t personalized our page yet, it’s not too early to register. I know a lot of the kids who shaved last year generated interest among their friends and classmates, so I’m hoping this year that more of our local schools will form their own teams. Braedan and Austin will serve as co-captains of Team Fairfax . . . which I can tell you now is the team to beat!
Yesterday was our last day as patients at Rainbow. No, we haven’t magically moved to some elusive category of you’re-so-healthy-you-need-no-more-follow-up-care (but if such a category exists, I’d sure like to be placed in it someday). No, no, instead, we are switching hospitals.
I know, that one came as a shock, right? We love Rainbow, that much should be obvious. We have been thrilled with the care we’ve received there over these five long years and I can honestly say that I feel at home whenever I walk through those revolving doors. So this change is not exactly our choice, but it’s necessary nonetheless. We’ve been chasing health insurance for a while now, constantly switching carriers in order to stay at UH, with ever-dwindling options. Our most recent best option shouldn’t ever have the word “best” attached to it as we’ve been paying 80% of our care at Rainbow out-of-pocket since January. With a kid like Austin, let me just say that that ain’t cheap.
But we’ve been unwilling to leave Dr. Auletta until we felt confident that Austin was well, and reluctant to leave him even then. And now, alas, he’s leaving us. It is for the best, for him professionally and certainly for his family. And we support him in this move entirely, knowing that he can achieve greatness in a position created especially for him and his expertise at Nationwide Children’s in Columbus. Yesterday was his last day at Rainbow, hence the uncharacteristic “clinic of miracle.” There’s a reason those patients were his; he made those miracles happen. He absolutely put his heart and his mind and his energy into caring for his patients every single day, going above and beyond for all of them. For all of us.
So yesterday, we said goodbye to Dr Jeff. And with his departure and Austin’s good health and our ever-changing health coverage, we said goodbye to everyone else too. To the nurses and receptionists, to the ultrasound technicians and coffee baristas. Most of the goodbyes were silent, in my head only, as it would have been too hard to verbalize all that I felt. There were a lot of “It’s not goodbye, we’ll come back to visit.” And we will.
As we meandered the hallways moving from one department to another, I was keenly aware of the days and weeks and months and years we spent inside that hospital. Over many seasons, from one hot humid summer through several seemingly endless winters. A couple of springs and even more falls. For holidays and birthdays, Austin morphing from a nursing babe-in-arms to a toddler in a stroller to my current tumbling schoolboy cartwheeling down the hallways (yes, he did that). He entered that hospital not yet knowing how to walk and he leaves it having just learned how to read.
He grew up in that building. We all did.
And when we walk into the Cleveland Clinic next year, there will be no familiar faces, no exclamations of “Look at him! Is that really our little Austin?” No friendly waves as we pass by no-longer-needed departments, no hugs as we step onto the elevator to find a friend, no chance for Austin to say, “Hey I remember that fountain. I love it there!” I’m sure the Clinic will be fine. I’m certain we’ll receive good care there.
But there’s only one Rainbow.
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.
I worked pretty hard to keep my political commentary off the blog this year, hence the recent scarcity of updates. (Of course, if you’re my Facebook friend, you know I certainly didn’t hold anything back there!) Today’s post is not specifically about politics, although it does contain some of my political views, which should come as no surprise to those of you who’ve been reading me all along. My message here is not about health care or elections or even voting, but it is about the power of one voice.
On the morning of Election Day, I posted this photo and comment on my Facebook page:
It got an awful lot of Likes awfully quick, but the very best thing that happened as a result (besides that now no one ever will be able to tell this child he doesn’t qualify for health care) was that it was shared by an old student of mine, now a sophomore in college who wrote, “Thank you, thank you, thank you to my 4th grade teacher, Krissy Dietrich Gallagher, for not only being the first person to teach me about the true meaning of democracy, and the power of one voice, but for fighting for her children no matter what the stakes are, and now taking strides to educate others about the right to health care. You are amazing, Mrs. Gallagher.”
How about that, huh? Now I’m not sharing that here just to give myself a public pat on the back (but it does make me feel very very proud and I did read it aloud to anyone who would listen that day), but to encourage all of us to tell the people in our lives how we feel about them.
That favorite teacher of yours? Find them and let them know how they influenced you. That neighbor you see out running early each morning no matter what the weather? Tell him you admire his dedication and drive. Even the little things, like an extra friendly cashier at the store … tell them you appreciate their smile. I can remember cringing as a teenager when my mother would compliment total strangers. “That color looks lovely against your hair,” she’d say while I’d roll my eyes and try to disappear behind her. But just think about how much it would make your day to hear something like that. It’s so easy, so simple, but it really would make a difference.
I have a favorite teacher, and she might be reading this right now. But it’s a been a while since I’ve told her that. And I’ve never told her that each time I create a new log-in for a website and have to answer a security question (you know, what was my grandfather’s first name or what city was I born in), I choose “Who was your favorite teacher” and type in that long last name that was once a fourth grade spelling word for our class. And I should tell her (I’m pretty sure I just did!) because I would be thrilled to know if one of my old students was typing in my name.
I know many of you are already doing this with the 30 days of Gratitude, where you publicly list all you are thankful for each day on Facebook for the month of November. So let’s all do that, Facebook or not, November or May. We’ve spent the past six months arguing with each other, so let’s move on to thankfulness and appreciation. We all have a voice and each of our voices has power. Let’s use that power for good.
I was going to post about Halloween today — with pictures of the boys in their various costumes: the packaged Target variety for trick-or-treating (which has been postponed until Sunday)and the we’ll-indulge-Mommy’s-crafty-side variety for Storybook Character Day. But it all seems a little inappropriate in light of the destruction and suffering being caused by Hurricane, I mean SuperStorm, Sandy. I realized this when I opened my email Tuesday morning to find a message from a local store announcing their “Sandy Shoe Sale!” and I thought, “Really? . . . You’re drawing in customers for shoes when people have lost their homes and livelihoods. Really?” I suppose veterans must feel the same way about the inevitable sales associated with their assigned day. (I’m less worried about offending ex-presidents with February mattress sales though.) And it of course reminded me of this ever so poignant (and rather depressing) Facebook post:
So instead of writing about our long lazy day off school on Tuesday (yes, we had our first official “Hurricane Day” due to high winds, downed trees and lack of power throughout Northeast Ohio), I can’t help but think of those suffering who were already suffering. Childhood cancer is the place my mind automatically goes, regarding hurricanes and anything else. And so I find myself thinking about all those kids and their families who believed they were already dealing with their life’s hardest thing. And how much harder it suddenly got on Monday night.
All those kids and their families who’d been holed up in hospitals for chemo and surgeries and stem-cell transplants, parents traveling back and forth between home and hospital, juggling work, other children and their sanity. And suddenly, there is no home, or the other kids have nowhere to go because schools are closed and they certainly can’t come into the hospital in the middle of cold season, with their snotty noses and hacking coughs. I think of the patients who were already in isolation due to stem cell or bone marrow transplants, living in a veritable bubble, who suddenly have to be evacuated through the cold and far-from-sterile streets of New York City to another, over-crowded, unfamiliar hospital. I remember back to the days following both of Austin’s kidney-sparing surgeries, the first in early October 2007 and the second in December 2009, when he had to lie so flat on his bed during recovery that he was actually strapped down. Restrained, with velcro strips attached to the bottom of the bed. There was a medical reason for this, of course: his kidney had to “settle” after being so thoroughly manipulated. But all I can remember was the overwhelming longing I had to hold my baby while he cried out in pain. I just wanted to pick the boy up and rock him in my arms, the single place (then as now) that he feels most safe. And I was unable to do that.
So today, I think of Austin and the others like him, both young and old, who are rendered completely immobile following their complicated and risky procedures, being moved down stairs because elevators are out of order and placed in ambulances to traverse the city through puddles and bumps and twists and turns. And I wonder how much new suffering can be piled on the old suffering.
But I don’t mean for this to be such a downer. I actually mean to say that this moment, like so many others, makes me feel lucky. And on the cusp of the season of gratitude I hope we can all step back and acknowledge how deeply fortunate we are and how truly rich our lives, on most days, in most weather, are. We have friends and family, a roof over our heads, health and mobility, choices and freedom, stores with shelves full of food and gas stations with tanks full of fuel, heat and running water and electricity.
And to those who don’t have some (or any) of those things right now, I wish you this: a good sense of humor, a deep well of patience and, above all, hope.