You are currently browsing the monthly archive for November 2013.
Last Friday afternoon, following our long day of doctors’ appointments, I posted a no-explanations-needed Facebook status that simply said, “Three-and-a-half years.” I know it didn’t need any explanation because I immediately got numerous likes and congratulatory comments.
This is all wonderful and we are pretty happy with the fact that Austin is indeed three-and-a-half years cancer-free, but of course, there are many many explanations needed. Because nothing in the cancer world is ever that cut and dry.
First of all, his heart, one of several oh-so-complicated organs for my sweet Austin. You may remember that this entire cancer journey started six-plus years ago with a visit to a pediatric cardiologist to look at a small VSD that had been found at his nine-month Well Visit. That VSD (a tiny and common hole in the wall of one of the chambers of the heart) still exists but poses no threat or consequence to his health at all. He has, however, had a history of enlargement of various parts of the heart, most notably his left ventricle. The measurements (as determined by ECHO and EKG) seem to fall in and out of the “normal range” depending on his overall size and age, and have been considered normal for some time now. But this past Friday, the dilation of that ventricle was larger than what doctors call normal. And there was another portion of the heart that was fused together. I know this sounds like a lot of mumbo-jumbo (to me too, especially when the report says things like, “Possible partial fusion of the right non-coronary commissure”), but the most important finding is that his heart is functioning perfectly. There is absolutely nothing wrong with the way it works, despite the fact that there are several things wrong with the way it looks.
The cardiologist wants to see us back in six months instead of the usual 12 as she wonders if the fact that last year’s heart exams were done at Rainbow and these at the Clinic may account for what appears to be growth. She also wants us to see genetics, which we haven’t done since Week One back in August 2007. At that point, in the days immediately following Austin’s diagnosis, he was tested for a particular chromosome that is associated with one (very dangerous) type of Wilms tumor. When that was ruled out, we never saw genetics again. The current cardiologist is confident that we don’t need to treat his heart in any way at this point in time, but is mindful that we may someday have to. She would like as much information as possible at that time, especially since his various abnormalities are not easily explained. Chronic high blood pressure can lead to an enlarged heart, but his blood pressure has been tightly controlled for years now. That coupled with renal failure, the late-effects of chemotherapy, and what others have referred to as “Austin’s unique anatomy” could make for an interesting future indeed. So, off to genetics we’ll go, in the next month or two.
The other explanations needed regard his kidney (speaking of oh-so-complicated organs). His function is indeed slowly (very slowly) deteriorating. The changes are minor and not unexpected and not causing any one any great alarm. His lab results over the summer led to our adding two new drugs to his current regimen, so he now takes three in the morning and four at bedtime. He also suffers from chronic anemia, although you would certainly never know. Again, as with his heart, these are problems we see on paper that are not at all evident in the child himself. One of the docs on Friday asked if he could keep up with other kids his age. Ha! The real question is, can they keep up with him?
So anyway, his oncologist would like him to repeat labs in a month’s time, just to ensure that his counts remain steady. There is really nothing big to worry about at the moment, any more than we would worry on any regular day. We know his long-term health is going to be anything but straightforward, we know the risks of kidney failure, heart disease, secondary cancers. We know that this journey will never be over. But the news from Friday was ultimately good. Austin’s kidney is still working. His heart is pumping along. And there is no evidence of cancer in his body.
Like Austin himself, who finds joy in the most unlikely places, we take what we can get.
Today is World Diabetes Day. I’m not quite sure what that means and I wouldn’t have known it even existed if it weren’t for my Facebook group of friends with type 1. I’ve only ever met one of these “friends,” the older sister of a forever friend and one of only two people with diabetes that I knew when I was diagnosed nearly twenty-eight years ago. But I like some of them quite a lot, more because we share political views than because we share a disease.
My life as a diabetic has been an interesting one, mostly because I don’t think about it all that often. Not that I don’t think about the practical, every day aspects of diabetes, because I most certainly do. I think about them all day long and even sometimes in the middle of the night. I test my blood at least six times a day, make adjustments before and after every workout, mentally calculate the insulin to carb ratio of every single thing I put into my mouth. But I rarely think about the philosophical or psychological aspects of diabetes, the why-me or how-has-this-made-me-who-I-am aspects. It just is who I am, yet another descriptor in a long line that includes friend, mother, sister, daughter, teacher, writer, athlete, runner, political activist, fundraiser, blogger, traveler, reader, cook, field hockey lover, laundry-folder, and on and on. It is not the first thing, nor probably even the fifth thing, that people discover upon meeting me. I don’t intentionally hide it from anyone but there always end up being people who’ve known me for months or even years who will one day see my pump and say, “What is that thing?” completely unaware that I rely on this little marvel of technology for life-saving insulin every minute of every day.
I wonder sometimes about how Austin will define himself down the road. Will “cancer survivor” be top of the list or a mere after-thought? The sort of thing people learn only when they see him without his shirt for the first time or if they happen upon old childhood photos? I don’t think he’ll hide it, as self-consciousness has never entered this boy’s repertoire. But I could see him shrugging and smiling flirtaciously at the stares of friends (he’s gonna work that scar, I just know it): “Oh that? Yeah, I had cancer when I was little.” When I was little . . .
So, anyway, Happy World Diabetes Day to all.
Because the tagline of my blog does not read, “Krissy Dietrich Gallagher’s blog about life, luck, love, parenting, writing, and, of course, school funding,” life does indeed go on outside of local election cycles. Austin had an abdominal ultrasound at Rainbow yesterday, part of our we’ll-pay-anything-to-have-him-scanned-by-the-one-doctor-who-knows-what-his-crazy-kidney-looks-like and his first of five tests in the coming week. Next Friday, he’ll go to the Clinic for an ECHO, EKG, chest CT and labwork plus a physical with his new oncologist. Unfortunately, I scheduled those appointments long before I knew the boys had that day off school, earning me serious Bad Mommy points. A trip to SkyZone immediately following should keep me in good standing though.
Yesterday’s results came back clear, unchanged since last May, the first hurdle cleared on our path to the title of 3 1/2 years cancer-free. Our radiologist did recommend planning another MRI at some point, but he said there’s no rush and it could be done at the 5-year mark. It’s been a while since we had the absolute certainty of such high quality imaging, back with that unforgettable scan in May 2012. Ultrasound imaging is acceptable but nowhere near as precise as MRI, so we’ll discuss that with our doc next week.
I snapped this picture of Austin yesterday in the waiting room, as I marveled at how much he’s grown since we first carried him into that space in an infant car seat.
This was the first time he could read the Scrabble tiles outside the waiting room doors, connecting words like head, neck, legs, and toe to Pediatric Radiology (what, no kidney?). And there he sat, reading a book all by himself. His feet still don’t touch the floor, so that may be the next milestone he hits in that all-too-familiar space. And someday, he’ll drive himself down to the hospital and maneuver into a parking spot as a tall, strapping teenager. I’ll accompany him, probably against his will, and he’ll no longer climb into my lap in between procedures, but will be much more concerned with where to access the hospital wi-fi.
And while all of that makes me feel sad, his growing up sure beats any alternative.
I’ve been thanked a lot in the past 48 hours. By my kids’ teachers and the parents of their classmates, by friends, neighbors, fellow Heights grads who’ve since moved many states away, random people I had no idea were in favor of this issue. And while all that feels good, the thanks really go out to you. To every person who dropped lit, toured the high school, made a phone call, forwarded an email, donated money, displayed a yard sign, read our words, listened to our stories and came out to vote yes on Tuesday. I thank you.
This unprecedented victory (truly: I do not remember a time when a school issue has passed in this community with 59% of the vote) has taken the work of many dedicated individuals and groups, and the trust and faith of thousands, and it means so very much. I am proud, I am thrilled and I am exhausted. There’s a part of me that wishes we never had to run this sort of campaign again. That the state legislature would take up an issue they’ve ignored for far too long and finally, once and for all, fix the way we fund our schools. I wish we could take the energy, dollars and endless hours people put into these campaigns and instead direct it to the schools themselves: fund a field trip (or several) with those donations, turn the hours of lit dropping into hours reading with kindergartners, use our passion in productive ways right in our own buildings. But that’s not how this works, unfortunately, and in a find-the-silver-lining sort of way, we’re lucky for it.
We are lucky to spend two months every couple of years pounding the streets in support of our community’s children and they are lucky to see it. We are lucky to engage in meaningful conversations with so many people, friend and foe, and to make new connections and new friendships in the process. We are lucky to read and hear the words of praise that so many of our peers have to offer our district’s students and teachers. While there is incredible contention around every school bond issue or levy, there are also many moments of unequivocal celebration of our schools. For me personally, it means so much to hear from my neighbors and friends with children in private and parochial schools, to have them ask for yard signs or hear them say that they always believe that public schools should be a strong option. It means so much to meet the parent leaders at other buildings and have us work together toward a common goal. It means so much to see Facebook friends in Indiana and New Jersey changing their profile pictures and updating their statuses in favor of Tiger Nation. It means so much to connect with elected officials and candidates on a shared vision.
There are many lessons to be taken from this victory, not the least of which is that residents seem to want their leaders to work with their schools, not against them. I do not think it’s a coincidence that the top two vote-getters in the Cleveland Heights City Council race were the two who endorsed and campaigned for Issue 81. Nor do I think it’s a coincidence that the solitary candidate in University Heights supporting this issue garnered the most votes from that city. The time is now for the two cities to come together and make us all stronger by engaging with and supporting our public schools. The citizens want that. The citizens need that.
There is much work to be done (and I’ll be writing about some of that soon). We have many difficult decisions ahead of us as we guide our leaders and especially our students through the upcoming plans and transitions. But for now, for today, I feel only lucky.
And I thank you.
This will be the final installment in my Why You Should Vote FOR Issue 81 series, followed — I hope! — by tomorrow’s Thank You message. I had a couple other posts drafted in my mind but Halloween and pumpkin carving, muffin baking, costume crafting followed by Mark’s birthday complete with a party got in the way.
But I do feel like this campaign has covered every base we can think of, and I hope we have no regrets when those ballots are counted tomorrow evening. So, without further ado, my final plea:
In my last post, I wrote so much about the responsibility our school district has in educating poor children that it almost sounded like they are our only audience. Indeed, they are not. Our schools serve many children from highly educated, professional middle and upper middle class families. And they do it well.
The very thing that is our district’s greatest challenge is also its greatest strength: the extremely diverse range of backgrounds, cultures, abilities, needs, values, educational levels, priorities and perspectives of our students and their families. We are not just one thing to one group, pigeon-holed as a poor urban district or an affluent suburban one. We are a little of this and a little of that. And while that is difficult and expensive, it is also incredibly valuable. For every special ed teacher and guidance counselor, social worker, intervention program, or night school for teen moms, there is also an advanced science and math class, foreign languages starting in kindergarten, award-winning vocal and instrumental music programs, Power of the Pen, Model U.N., courses for college credit, and extra enrichment programming. And kids from all backgrounds participate in and benefit from those wide and varying opportunities. And it is this rich diversity, this microcosm of real world problems, challenges and achievements, that make our district so unique.
I am proud to send my children to these schools and I am proud to do it as a choice. I know many others who could afford to send their kids elsewhere but don’t because they know that they’re getting all they need and then some in CH-UH. I know families who have pulled their children out of the area’s most prestigious private schools precisely to access the academic rigor they’ve only found in the Heights Schools. Our district’s graduates go on to the nation’s top tier universities, state schools and community colleges. Some move straight into trades and others join the military. Some become or are already parents. These students represent the broad and varied world in which we live. And our schools are working hard every day to prepare them for it.
I sometimes wish the discussions around this bond issue focused solely on the physical realities of our buildings. But the conversations have veered, as they so often do, into the realm of what our children deserve. “Our” children, “their” children, “those” children. Blame has been placed on the shoulders of kids and especially teens who don’t always behave the way we want them to. I actually saw a comment on someone’s Facebook page that suggested that the district construct new buildings for the kids who “want to learn,” and use a GPA cut-off point to determine who gets to move into them and who has to stay behind. “Let the others earn their way to the nice stuff by improving their GPA in the existing spaces,” this woman said. And, because she just couldn’t help herself, she added, “They’ll only destroy the nice stuff anyway.”
Wow. Is that who we are? Is that who we want to be?
Let me tell you something about my own kids, who happen to be high achieving and well-behaved elementary students. If left to their own devices (literally and figuratively), they would sit on the couch and play video games all day. They’re not hard-wired with some “want to learn” gene. They do their homework and practice their instruments because I make them! Because my husband and I model responsible behaviors every single day and have since they were born. Someday, by the time they’re in high school, I imagine they’ll be self-motivated and self-regulated enough to do what’s right without being told. But if and when they get there, it will only be because we laid the foundation here at home.
There are plenty of kids without that. Who are essentially going it alone, without the guidance or role models that are inextricably linked with success. Some of these kids will find something deep inside themselves and will thrive against all odds. Others will squeak by, doing just the bare minimum. And some will be disruptive and even destructive, fighting back against a world that has always seemed unfair to them.
Leaving those kids in classrooms that are swelteringly hot, with leaky ceilings and moldy locker rooms, while waiting for them to “prove” themselves, is not the answer.
I believe that my two sons deserve physical spaces that are inspiring, comfortable, safe and healthy. I believe that they shouldn’t be subjected to wild swings of temperature or rusted, leaking roofs or over-stretched mechanical and electrical systems that are costing all of us way too much to maintain. I believe they deserve state-of-the-art science labs and modern technology, access to the best athletic, musical and performance spaces, and buildings they can be proud of. And I believe that the kid sitting next to them in class, the one whose mom works three low-wage jobs and may not have time to read to him or ensure his homework is completed, deserves the same kind of spaces. And even the kid next to that one, you know that kid? The one whose mother failed to show up at her scheduled conference — again — because she didn’t bother to read the reminder that came home because she doesn’t bother to read anything that comes home … I believe that kid deserves the best kind of spaces in which to learn. If we’re gonna make this issue about who deserves what, about how we value our children and the children of those around us, then so be it. I value all of them. Even the ones who are failing. Even the ones who screw up. And I believe that they all deserve safe, healthy, inspiring, comfortable and, yes, beautiful school buildings.
That’s why I will vote FOR Issue 81 tomorrow. And that’s why I’m asking you to join me.