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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.

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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.

You know how once you start thinking hard about something, it seems to pop up everywhere?

Well, this kindergarten things seems to be popping up everywhere. Yesterday, I read this article from a recent Newsweek, which focuses on parents who hold their kids back from kindergarten (often upon the recommendation of the private schools to which they’re applying) in order to give them an advantage over their classmates, particularly when it comes to standardized test scores.  Reading stories like that make me absolutely want to send Austin “early” (on time) because I find it so frustrating that parents constantly push their kids to be the best best best.

Then today I read this (worth your time, I promise), not specifically about kindergarten but just about how we’ve turned childhood into some kind of race, a massive competition between the super-successful and those lagging behind, and about how we should return to a time when kids were allowed to be kids for as long as possible. It made me second guess sending him for a completely new reason, one that only a few people have mentioned thus far. Everyone keeps talking about how holding him back will give him advantages later — in his schooling, in his  social life, in his future. And so much of it smacks of having advantages over others — being the best, the brightest, the oldest.

But this little essay made me think about the advantage of just letting him be a kid, right now, less stress, less structure, fewer expectations, for an entire extra year. Like a freebie. Here, little Austin, you’ve had to do lots of grown-up things already (way too many way too grown-up things; you should hear my four-year-old talk about “bwood pwessure cuffs”), so here, take a break. Stay in preschool, build fantastic vehicles out of popsicle sticks, run on the playground, sing songs and do kiddie yoga, don’t fret your pretty little head about phonemic awareness and SmartBoards and Mandarin Chinese.

I’m not so concerned about my kids having advantages over other kids (although admittedly they do — parents who’ve read to them incessantly since birth being chief among them). But I am certainly all about them enjoying the advantages of well-rounded, old-fashioned childhood — freedom and exploration and creativity and self-expression.

Hmmmm, back to the drawing board.

I’ve gotten a couple of questions over and over lately from some of you who are putting a lot of thought into this issue. My answers, of course, are anything but clear-cut. The first is that we really have no idea how likely this cancer is to return. If we looked only at the study protocol we’ve been following, half of the children had a second recurrence (which, not to confuse you, means a third time). But, like I’ve all too often, Austin doesn’t fit neatly into any of the categories of children in that study.

The main reason is that Austin’s initial tumors, on both sides, had that rare rhabdomyomatous differentiation. This is significant in terms of his future prospects mostly because his initial cancer was resistant to chemo and therefore, the fact that it recurred once doesn’t necessarily mean that it beat chemo — which is what makes recurred cancer so much more deadly in the first place. Think about this: if you treat cancer cells with the deadliest weapon known to doctors (chemo) and instead of being destroyed, they instead go into hiding before sneaking back out again, that means they’re pretty darn tough cancer cells. But if you knew that chemo wouldn’t work on them anyway (or would only work on 20% of them as was the case with Austin), and then they returned, it’s a whole different ball game. The cells didn’t actually beat the chemo, they just didn’t respond to it.

Add to that the fact that his most recent cancer was not rhabdomyomatous at all but instead a regular old Wilms tumor and things get even murkier. Did it morph? Was it maybe smarter than the chemo and it somehow changed over time? Or, because we were watching it so closely and frequently in those months and actually saw it grow over that two week period and then quickly swooped in and removed it, did we just catch it so early that it hadn’t yet had the chance to evolve from a classic Wilms into a rhabdomyomatous Wilms?

I know, blah blah blah, I’m sure I’ve lost a lot of you with that damn “r” word again. The important thing to glean from this is that Austin’s recurrence doesn’t mean the same thing as some other child’s recurrence.  Unfortunately, what it does mean remains unknown to all of us. Quite frankly, we don’t know whether his chances are made better or worse thanks to his unique situation.

Which brings us to the other major question I’ve heard and that is, how likely is this cancer to spread if it does return? A very important question because if it never spreads, then taking the kidney out preemptively isn’t even necessary. Why not just roll the dice, hope for the best and then if (if!) some small shadow appears on a scan down the road, we remove the kidney then? If it’s not gonna spread anyway, we just scoop out the whole kidney (“whole kidney”? ha!), tumor and all, and start dialysis then, when we must. One problem with this is that it resets the clock and we then have a full twenty-four months before transplant (as opposed to, say, twenty months if we remove the kidney electively in August). The bigger problem is the danger of the cancer spreading. If we leave the kidney in and cancer returns and then spreads beyond it to Austin’s liver or lungs, then we’re in real trouble. Like, you know, real trouble.

Which brings us back again to the rhabdomyomatous question. That variant is highly UNlikely to spread (and Austin’s certainly never has), whereas classic Wilms is more likely to spread. So, like I just asked, was his most recent cancer really classic Wilms or would it too have morphed into a rhabdomyomatous tumor over time?

I know, your head is hurting now. Imagine how mine feels.

So this brings us back to our current — and ongoing — predicament about what to do next. So many of you have expressed what a terrible position this is for me and Mark to be in, how horrible and unfair it seems to place this sort of responsibility in the hands of parents. And in many ways, I agree: I hate the choice we have in front of us.

But I also believe that we are the best ones to make it. In the absence of clear medical and scientific information, no doctor has the answer right now. They have opinions and recommendations, but they don’t know what the right choice is. And neither does Mark. And neither do I.

But we do know Austin. And we know, beyond a shadow of a doubt, that no matter what we do, we will do it with Austin’s best interests at heart. We are his parents. No one on earth could handle this decision more carefully than we will. No one on earth could care more about its outcome than we do.

So who better to make this decision than us? In whose hands could his fate possibly be more secure than ours?

Wow, well, that was quite a typo, huh? As I think was obvious, the last lines of my previous post were supposed to read (and now do read), “I do NOT want to be like them.” I am going to quickly breeze over that so as not to make myself too superstitious and nervous about possible hidden meanings.

Anyhoo, Austin needed platelets again today (of course, why are we surprised?), but that came after a lovely morning at school. He didn’t even cry when I left him, which is a rarity. It’s been a struggle to fully acclimate him to preschool since every time he gets into a groove there, he’s pulled out again for a three week “vacation.” So today was good and he’s due there the next two days as well.

We were bummed about the platelets but pleased with his much more reasonable blood pressure numbers, even after his transfusion. Maybe the medication is finally at the right dose and doing its job.  While waiting for his platelets to arrive from the blood bank, we spent a sunny if chilly hour outside engaged in our favorite activity: construction gazing.

We’re not expected back at the clinic until Thursday morning, a full two days off. Well, two days off for him. Mark and I are planning to meet — sans children — with our oncologist and nephrologist tomorrow to try to flesh out the next steps in Austin’s treatment. We are hopeful that we’ll get enough clear information that we can make a decision we feel solidly comfortable with. We know, however, that answers to most of our questions simply don’t exist and we’ll therefore have to choose among the lesser of evils.

While Mark and I think differently and come to our decisions via different routes, we both fully understand and respect each other’s decision-making process. We also know what each of our weaknesses are, such as that part of me wants to stop chemo simply because I am sick and tired of chemo. I recognize that and Mark recognizes that and we will do our best to not let such (expected but selfish) feelings influence our ultimate decision.

In my mind, this is a choice between an almost certain bad thing happening if we continue (kidney failure) versus a maybe (?) remote terrible thing happening if we don’t (cancer returning or, worse, spreading). Not to mention the numerous other bad things that can happen as a result of continuing (bone marrow depletion leading to bone marrow transplant, secondary cancers down the road, fatal infections of the central line, etc). We don’t need to make any decision for a while because he still has another round next week from which recovery is bound to be long and torturous (same chemo as this last time — just piling it on).

Neither option is perfect, neither road a smooth one to travel. Both are fraught with danger, sometimes obvious, sometimes hiding around the bend. No matter what we choose we’ll be taking a huge risk. But we will be cautious and we will be wise. And I hope hope hope we will be right.

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