TOP TEN REASONS TO VOTE FOR ISSUE 2 ON TUESDAY, MAY 5.

10. School levies are how we fund public schools in Ohio. Nobody likes it and it’s not even constitutional but it’s the only way districts can meet rising costs associated with natural inflation.

9. The district has LESS money than it had in 2011, when we passed the last levy. The state has cut funding by $2M this year, and we lose an additional $1M to charter schools each year.

8. The district has consistently been rated by the State of Ohio as being EXCELLENT stewards of taxpayer money. Scott Gainer was named the single BEST CFO of any public school district, non-profit organization or governmental agency in Northeast Ohio.

7. Administrative costs have NOT risen by 52%, a lie being spread by the opposition. The district had 42 administrators in 2011 and 38 in 2014; a reduction of 9%. Facts matter.

6. The district has cut $3M from its budget while still protecting classroom instruction. We had 486 teachers in 2011 and 481 in 2014, a reduction of just 1%.

5. Passage of this levy protects the value of your home. No one wants to live in a community without strong schools.

4. Public education is a cornerstone of our society and our democracy. We cannot be a strong community or a strong nation without well-funded, effective and engaging school that are educating the citizens of tomorrow.

3. There are people on the other side who’ve said things on social media like, “Why should WE have to pay to educate THOSE children?” We cannot let hate win in this community. That is NOT who we are.

2. Our schools are educating ALL of our students. According to the State’s Value Added scores, we are doing a BETTER job at showing academic growth for all subgroups of students than Shaker, Solon, Beachwood, Lakewood or Hudson. This is INCREDIBLE and we should be shouting it from the rooftops!

And, the number 1 reason why everyone should vote FOR our schools on Tuesday is actually another 5,500 reasons. The opposition always accuses us of making campaigns “about the kids.” But we’re talking about public schools here; of course it’s about the kids. It’s about every child who walks into our buildings, whether they are black or white, rich or poor. Whether they’ve bounced around in five different school districts in three years or have been in the Heights since birth. Whether they’re identified as gifted or living with severe disabilities. Whether they are angry and filled with doubt or eager and filled with hope. EVERY child is worth our investment; EVERY child deserves your vote.

When state report cards get released right in the middle of a school campaign, both sides are bound to seize upon them as proof that their cause is the right one. Well, guess what? State report cards were just released and they prove that our cause is the right one.

Most of the measures on the state report cards have remarkably little to do with what goes on inside a school and much more to do with what goes on outside a school. Study after study has shown that scores on standardized tests (what much of our report card’s grades are based on) do not reflect the quality of a teacher’s teaching or a student’s learning, but instead simply reflect the socioeconomic background of the particular children in that particular district. Look closely at a school’s test scores and you can make an educated guess about how many of those children’s parents went to college and how many of those families are living in poverty. Our local test scores reflect that as well.

The state report card’s only real measure of how much a teacher is teaching in the nine months that he or she has a certain student, and the report card’s only real measure of how much a student is learning in the nine months he or she is enrolled in school, is “Value Added.” (Let me say here that there are many, many other measures of how well a teacher is teaching or a student is learning that aren’t easily quantifiable and therefore not considered on our report cards, but that’s a post for another day.) Value Added means pretty much what it says it means: how much academic value was added to that child’s educational life in the course of that one school year? And the measurement is straightforward: assess a child’s abilities and skills in August or September (how well they can read, what their math skills are, and so on) and then assess again in May or June. This shows one of the few things we can measure that’s actually worth measuring: their academic growth.

Here’s how the Ohio Department of Education describes Value Added: “This is your district’s average progress for its students in math and reading, grades 4-8. It looks at how much each student learns in a year. Did the students get a year’s worth of growth? Did they get more? Did they get less?”

There are four categories on which districts are graded: Overall, Gifted Students, Students Achieving in the Lowest 20th Percentile, and Students with Disabilities. And for the second year in a row, the Cleveland Heights-University Heights School District earned A’s in every category of value added: A, A, A, A.

This means one thing: Our teachers are teaching and our students are learning.

But how can this be, one might ask, when many of the other test performance measures are low? Consider this scenario, some version of which our schools face every single day: A 4th grader moves into CH-UH from another district, reading at a first grade level. That child is placed in a small class with a reading specialist to learn the necessary skills to become a reader. Imagine he works extra hard, as does his teacher, and demonstrates one-and-a-half years’ worth of growth in that one school year. That’s awesome! That is better than expected and means he succeeded, with the help of his teachers, in moving from reading at a first grade level to reading at halfway through a second grade level. It also means, unfortunately, that when he takes the 4th grade PARCC test in reading, he will fail (especially because the PARCC uses reading material at one to two grade levels above the grade being tested). And that’s the result that people will point to in the newspaper to say that our district is also failing. And yet, that couldn’t be farther from the truth. The kind of growth that student demonstrated, as evidenced by CH-UH’s four A’s, points out an important truth: Our teachers are teaching and our students are learning.

Now, some of the naysayers (we have naysayers, in case you hadn’t noticed) might assume that this Value Added category must not mean much; maybe it’s easy to earn four A’s. I will show you, through comparison with other districts, that it is not. I don’t mean to put these other districts down (I know and love many people whose children go to school in them and they no doubt outperform us in other categories), but such a side-by-side look is necessary to understand that it is not, in fact, easy to earn all A’s in Value Added.

Our neighbors to the south (Shaker) earned D, A, C, C (see the categories listed above to refresh your memory). Someone may say, “Well, their kids are clearly doing too well to begin with to even show that much growth.” But then I would reply, “Look at Solon, who earned B, A, B, A.” Hudson earned A, A, C, A, which is sort of revealing (maybe they don’t have the same kind of experience we do in CH-UH at reaching the lowest achieving kids and helping them grow). Other districts widely believed to be doing a great job educating their community’s children, are (Beachwood earned A, B, B, A — almost as good as Heights). And this is not one of those cases where starting with low scores benefits you (as in, then you have more room to grow); East Cleveland earned F, F, C, C. Two districts that we’re often compared to (Lakewood and Euclid) earned A, D, A, B and A, D, A, A respectively, which shows that CH-UH is doing a noticeably better job meeting the needs of our highest achievers and helping them grow as well.

I don’t honestly believe that levies should become referendums on the performance of school districts, but they very often do. I have seen, time and again, in the comments of the anti-school folks: Where are the results?

Well, here they are. The results show that our teachers are teaching all our students, from the one with disabilities to the one identified as gifted. The results show that all those students are learning, from the one who started at the bottom to the one who started at the top. Now those are what I call results.

Every time a local school issue appears on on the ballot, an army of district parents try to convince the general public that our children are “worth it,” that they “deserve” a publicly funded education. We share all their praise-worthy achievements and announce to everyone who will listen that our local kids placed third out of 37 teams at last weekend’s Robotics competition or that our middle schoolers hold a regional record for victories at the Power of the Pen, or that the Barbershoppers ranked first in the world last year at an a cappella competition. I write blog posts about how “nice” my boys’ peers are and drone on about how much science and math content they’ve learned.

But you know what? This isn’t necessary. Or it shouldn’t be. Of course our kids deserve a publicly funded education. All kids do. Free, appropriate public education is a cornerstone of our modern democracy and we cannot raise productive, engaged citizens without it. We cannot come close to claiming to be a land of opportunity if there is no opportunity.

Here’s the deal: Our local school district is asking for voter approval of a 5.9-mill operating levy in less than a week and I happen to be one of the chairs of that campaign. And I’m sick of trying to convince people that our community’s children, even those who are poor, even those who are black, even those who might seem disengaged or irresponsible, are worth their support and their tax dollars. In my opinion, that support should be automatic.

Let me explain a little about the wonder of House Bill 920. I know, a blog that covers childhood cancer and now the nuances of school funding in Ohio . . . what a way to build a following! But bear with me a bit because it’s actually fascinating, in a hard-to-believe-that-could-possibly-be-true kind of way.

In 1976, at the height of rising inflation, the Ohio General Assembly passed HB920, which froze all tax revenue going to schools (and public libraries, but not city or county governments) at their 1976 levels. Not at a percentage or a rate, but at the actual dollar amount. The only way to increase that incrementally is with voter approval of new operating levies. I don’t think anyone can reasonably expect any district anywhere to provide an education in 2015 with the same amount of money they had in 1976.

But even when levies are passed, the need for additional levies never goes away. The state has cut $2 million in funding to our district in the past few years, not to mention what we lose due to foreclosures or reduced collections on property taxes, or the nearly $1 million going from our district’s budget to charter schools this year (including those that are completely disreputable and only out to make a profit) and more money still to fund vouchers. What all this means is that the district has LESS money with which to operate than it did when our community passed the last operating levy in 2011.

The money this levy would generate wouldn’t lead to raises (aside from agreed-upon step increases for teachers) or anything new; it would simply allow us to maintain. Because districts are legally required to balance their budgets, ours would have to cut $6 million if the levy doesn’t pass. That would undoubtedly impact every aspect of the district, from classroom teachers and programming to administration. That’s not an empty threat as a campaign tactic; it’s our duty and responsibility to tell people honestly what will happen if this fails. Another sad truth is that if this fails, the need for money will not go away and the district will have to come back again and ask for approval of a new levy. Again, not a threat, but a fact.

There has been much talk lately about administrative costs and I truly hope people will read this section carefully because it’s important that we all understand what we’re talking about when we say those words. The Ohio Department of Education requires districts to categorize all certified staff who don’t provide direct classroom instruction to students as “administrators.” This means that the salaries of our social workers, counselors and psychologists all fall under “administrative costs.” Do we spend more than most in this area? Yes, because we are doing an excellent job meeting the varied and complex needs of our largely impoverished student body. In addition to the “typical” social and emotional issues social workers help students with, ours also ensure that our district’s homeless students have daily transportation from their temporary shelters to their home school buildings. Or that the child who can’t see the board but can’t afford glasses gets in touch with the right agency who can provide them. Or that our young mothers access the services they need to stay in school and graduate.

The counselor in my sons’ elementary school hosts a lunchtime book group for students struggling with social issues. She organizes the Girls on the Run program for our 3rd through 5th grade girls who need both extra physical activity and a way to build self-confidence. She manages the Peer Mediators who help find peaceful resolutions to conflicts during recess. She attends every single IEP meeting for the many students in our building with special physical, emotional or learning needs and is constantly working directly with students, either individually or in small groups, all day every day and often well into the evening. Our social workers and counselors work tirelessly to ensure that all students and their families have access to shelter, food, electricity, running water, medical care and clothing so they can come to school ready to learn. This is not what you may envision when you hear the word “administrator.” They’re not sitting in some fancy corner office with their feet up on a desk (not that our actual administrators are doing that either, of course!).

Another piece of the administrative costs puzzle requires just a quick explanation: For the last year for which the ODE published data, our district’s teachers asked that their salaries be spread out over twelve months instead of the usual ten, but those final two months happened to be in the next fiscal year. This was a one-time recording issue, but it makes it look like the district spent one-sixth less on instruction than it actually did.

The other complaint that we frequently hear is that our taxes are too high (even when they’re offset by affordable housing). It helps to understand some of the historic reasons behind our local tax structure. The very things that make our community special also mean that we pay more in property taxes. Years ago, residents fought against the construction of freeway exits both where the Shaker Lakes Nature Center now sits and where the Cedar Lee Theater is. I’m glad to not live near a freeway (except when I need to get to one, of course!) or the industrial parks and chain restaurants that inevitably pop up around them. I’m glad to live in a neighborhood that values its small, independently owned businesses and green spaces. But, without a large commercial or industrial tax base, a heavier burden is placed on the shoulders of individual homeowners. This is unfortunate, but it’s also reality. We must keep our community strong and we can’t do that without strong schools. And strong schools require basic operating funds.

Please join me on Tuesday, May 5th in voting FOR our children, our schools and our community.

There’s something about your own kid growing up that makes it feel unique to you, as if no one else has ever had the surreal experience of watching their child — the one they’d rocked to sleep and pushed on a swing — suddenly morph into a tween or a teen or (horror of horrors) an actual adult.

I’m feeling that way with Braedan right now, as we look ahead to his 5th grade promotion ceremony, a mere six weeks away. From this little critter, so eager to walk to his first day of kindergarten . . .

First day

September 2009

. . . to the mature and confident (and sports and tech-obsessed) eleven-year old he’s become.

I am so glad he’s spent this six-year journey of growth and discovery at Fairfax School. I’m one of those parents who doesn’t actually think you should shop around for schools. Might sounds strange coming from a former teacher, in a world where all good parents search through every possible option to pick the very best for each individual child. I had fleeting moments of guilt, in those early days, for not putting more effort or thought into it. But I tend to think, unless something’s seriously wrong, you just attend your local neighborhood public school and take what comes. That’s what most parents did in my day. All the kids on the block, with the exception of a few Catholic families, simply went to their public school.

Now there are state rankings and test scores and data to pour over, tours and interviews and “educational philosophies” to consider. Like so much of modern parenting, picking a school for a five-year old requires an advanced degree. And causes undue stress, because no option out there is ever going to be perfect and yet our kids will still be okay.

In our case, we signed Braedan up for the one we could walk down the street to and that was that. He hasn’t always been thrilled with school, he had one year in particular that was less than stellar. But it helped him grow, it taught him he could be resilient and thrive in any environment. And taken as a whole, especially from this reminiscent vantage point, Braedan’s elementary experience has been wonderful. He’s had teachers he loves who he knows love him back. He’s learned an extraordinary amount (way more than I learned when I was a student in the same building). He’s had the chance to enroll in after-school activities that range from drama and racquetball to cycling and skiing. He’s done things few elementary kids have the opportunity to do, like sing on the stage at Severance Hall or spend three nights in the Cuyahoga Valley with his classmates exploring the great outdoors.

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And his friends. Well, being that he’s a very social creature (understatement), his friends have been the highlight of it all. And he is friends with everybody. Especially this year, with his grade so deeply connected by their role as building leaders and their shared history, I can think of very very few children he wouldn’t call friends.

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I’ve watched him rally his schoolmates around causes he believes in, like Purple for Becca Day or St. Baldrick’s. In kindergarten he was the lone shavee in that building. By second grade, he had a few friends alongside him. This year. . . take a look.

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More than anything else, I’m so happy that he and Austin both attend school in a building and in a district where there is such a high premium on nice. That’s the biggest difference I see between the Heights schools I attended in the 70s and 80s and the Heights schools of today (I guess Heights has changed, after all). I don’t think we were particularly cruel or anything, but we were much more concerned with being cool than with being nice, even by 5th grade. Kindness and tolerance and acceptance are now celebrated and honored from kindergarten through 12th grade. Of course, this isn’t the case for every single child every single day across the board (they are human). But when I hear from parents who’ve moved their kids from local private and parochial schools into Heights schools (and especially into Heights High), one of the things they rave about the most is how nice their children’s peers are.

I’m so proud of Braedan for all he’s accomplished in his first six years of schooling. And I’m so excited for all the incredible opportunities that lie before him as he moves into Roxboro and eventually Heights.

But I still can’t believe that this little LeBraedan is actually growing up . . .

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It’s March 20th. The first day of spring. A time that for most of us marks a beginning. A sense of relief (phew, we made it!) and excitement for all that’s to come (it is coming, you know). New growth, lengthening days, all the signs of life returning.

It is not so for the Meyer family. This day, one year ago, marked the beginning of the end. There was new growth alright, but not the kind that anyone wanted. The discovery of a new tumor in Rebecca’s brain and the stark reality — that her parents already knew but had hoped they’d never have to truly experience — that there were no more options. There was nothing to be done.

It wasn’t the end of hope. The family kept fighting, kept searching, kept grasping desperately for any possible way to extend her life. But they knew. One year ago today, on the first day of spring, they knew what was coming. And they knew they couldn’t stop it.

I still have hope. I hope that they Meyers will heal. That each day, they’ll feel a little more joy and a little more peace. That one day, they’ll laugh til tears run down their cheeks and they forget, even if just for a moment, that they’re sad.

And I hope that this is the beginning of the end of childhood cancers that kill. I’m not convinced that we can actually end childhood cancer, though that certainly is the goal. But I do truly believe that we can end childhood cancers that kill. I think with the right combination of funding and technology, brilliant minds and steadfast determination, doctors can achieve that much.

And I also truly believe that we took one step in that direction on Sunday. That the brave acts of the youngest among us will, in a real tangible way, move us closer to that goal.

I’ll repeat some of the things I said on Sunday, variations of which I shared twice, once with the Feldman family in the beginning of the event and again with the Meyer family in the middle.

The children of Fernway School and those of Fairfax School have had to learn some hard lessons in the past week and in the past year. They’ve had to see, up close and personal, how sad and cruel and deeply unfair the world can be. But they’ve also had the opportunity to see how good the world can be. How much kindness and selflessness there is out there. How many people are willing to come to your side in a time of need, to stand by you, hold your hand and bolster you up. How many are willing to do what’s right even when it’s terrifying.

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They’ve seen that there is a time for laughter and lightness, a time to honor and celebrate what we’ve lost while still looking forward. They know what it means to sacrifice, to give when you know that you won’t get anything back from it. Every person in that room could have shaved their heads on Sunday and it wouldn’t bring Dan or Rebecca back. But they were still willing to do it. Because they embody hope.

Because they still believe in new beginnings.

 

Sunday was wonderful. Sad, happy, moving, chaotic, upbeat, serious, silly. Wonderful.

Thank you to everyone who helped the day run smoothly, so smoothly, in fact, that we finished shaving 170 heads in just over three hours. All of the volunteers, from the hard working barbers to the kids hawking baked goods, made our event the success that it was.

And it was indeed a success! Right now, we have $100,201 online plus another $3,381 in checks that I mailed today. I struggled a bit with our goal this year, after such a remarkable 2014. I knew that having two sick children in our neighborhood contributed in a big way to the $124K we made last year. From Carolyn’s unprecedented $12,000+ shave to the impressive showing at Roxboro Middle School, we would have been hard-pressed to match those incredible earnings. But still, I went big and set our initial goal at $125,000. About two weeks ago, I was feeling a bit disappointed at our mediocre progress (I’m not sure whether I’m an eternal optimist or just plain greedy because there was nothing mediocre about what we accomplished!), but I began debating what to do: Should I lower our goal? To a more attainable and realistic $100,000? That felt so defeatist. I didn’t want to give up! But we simply weren’t going to raise $125K, even I had to admit that.

I finally settled on $111,000, a nice in-the-middle sum that included my favorite number. And I’m glad I did, because I’m fully confident that we’ll reach it. I’ve followed my participants’ pages and their totals are rising every day, especially those of the women who did the full shave. No doubt, they’ve gotten enough stares and questions and shocked responses (“You really did it!”) that they’ve garnered additional donations. All of that, plus the couple thousand we should make from the Dewey’s Pizza School benefit in June and I think we’ll be there.

But once we’re in that room, putting the “community” in Community Center, the money matters less and less. Whether you raised $50 or $3,000, every one of you who set foot on that stage made a powerful statement. To sick children, you said, “I stand with you. You are not alone.” To your peers, you said, “I can see outside of myself. There are things more important than how I look.” To the world, you said, “I am willing to sacrifice on behalf of others, even others I don’t know. I can make a difference. You can too.”

Everyone in that room heard you. Everyone was moved by your generosity, your kindness, and your courage. We all watched our children, the little people who are supposed to look up to us, do things we might not be brave enough to do (I’m certainly not). And we watched our own peers do the very same things. We witnessed people growing closer, mother and daughter teams shaving, fathers and sons, brothers and cousins and classmates and friends doing something big, side by side. Which is the only way we should ever be when we do something big.

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I saw three children, two boys and a girl, pay tribute to their father in the way that he would have chosen had he had the chance. They climbed on a stage and sat with their friends and schoolmates to make the world a better place. And then they went to his funeral. It’s not the way the childhood should work, there’s no doubt about that. It’s far, far from fair. But they did it and it made them each smile. At least a little.

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I watched a beautiful young woman shave her head in memory of her mother, with tears streaming down her face. And another young woman, with full pregnant belly, making the world a little safer for her unborn child. A six-year old girl and her mother holding hands with the clippers buzzing above their heads, their eyes on each other, their hearts with their lost friend.

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And the boys. I know I spend a lot of time highlighting the girls and the women, but this is a big deal for the boys too. It requires courage and a willingness to stand up and truly be seen, stripped of that thing that makes you simultaneously stand out and blend in. One, who’s shaved with us since the beginning, said that he wasn’t sure he wanted to continue this year now that he’s in middle school. Looks matter to the fellas too, you know. But then (and I quote), “I thought that this might save my future children from having cancer, and I never looked back.”

And that’s why we do this. So that not one single one of those kids who joined us on Sunday, not one 4-year old or one 15-year old, has to hear the words, “Your child has cancer.” And that they certainly never, ever have to hear the words, “There’s nothing else we can do.”

I’m gonna say the same thing here that I say every year, because it’s the only thing that deserves to be said at this moment:

THANK YOU.

I am humbled and honored to be able to bring this event to this community and I am humbled and honored by how enthusiastically this community embraces this event. Your eager participation and your incredible generosity, both of spirit and of all things tangible, are beyond measure.

As of right now, between our online donations and the cash and checks we collected today, we’ve raised $98,673. I have no doubt that we will creep over the $100,000 mark in the next few days and even reach our very ambitious goal of $111,000 by the time the fiscal year ends in June. (That means you can keep giving, people!)

There were quite a few highly emotional moments today that I’ll share in the next few posts, but for now, please rub your fuzzy heads, pat yourselves on the back, hug a bald person, and watch Fox 8 news in the morning (8am?) to see Braedan, already bald, and his classmate Joey, who’s shaving on the air, tell you why they do what they do.

I truly thank you from the bottom of my heart.

In the eleven and a half years that Mark and I have been parents, we’ve heard the words “Your child has cancer” on three separate occasions. And each time, it stunned us and terrified us and brought us to our knees.

But every day we know that we’re the lucky ones because we’ve never had to hear the words, “There’s nothing else we can do.”

And the reason for that is medical research. If Austin had been diagnosed with his rare cancer twenty years earlier than he was, I’m pretty confident he wouldn’t be here today. Pretty positive, in fact. But somebody twenty years ago funded the research that saved his life. Now it’s our turn to do the same for some other child, and some other mother, twenty years from now.

I don’t run this St. Baldrick’s event for Austin, although it certainly felt that way in the beginning. Today’s truth is that Austin does not have cancer and, at the risk of inviting bad luck, I don’t believe he ever will again. If I really wanted to do something for Austin, something that would actually benefit him as an individual, I’d be raising money for kidney research. That’s our next big thing, his next big thing.

But this isn’t for Austin. And it isn’t even for Rebecca, though she too is a driving force. This St. Baldrick’s event — and all the money that comes with it — is for the next kid. The one whose name we don’t know yet, the one whose health updates don’t appear daily in our newsfeeds. It’s for the parent who hasn’t ever had to hover over a hospital bed, watching the lines on a beeping machine, the parent who’s never had to write a CarePage update, who’s never imagined holding their dying child. That parent out there who is innocently watching their healthy child, worrying every day worries, celebrating everyday successes, with no inkling of what’s to come.

Because we were all that parent once. Every one of us who’s walked around the pediatric oncology floor with a cup of weak coffee and a dazed look in our eyes was once a normal parent, with normal expectations, normal fears, normal hopes.

So, until fewer and fewer parents have to hear, “Your child has cancer,” and until NO parents have to hear, “There’s nothing else we can do,” I will keep fighting this fight. I will keep running this event, begging for volunteers, pressuring people into parting with their hair, harassing them to raise more more more. I will keep honoring our children, the few we’ve lost and the few we almost lost, alongside the many who are brave enough to sit in the barber’s chair and shave it all off for someone else. I will keep shouting from the rooftops that this is important and necessary and urgent. I will keep fighting.

And you can too. www.stbaldricks.org/events/clevelandheights

Some of you may have seen this yesterday when I posted it on Facebook, but it’s worth a click to enlarge:

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It provides us all with some fairly good reasoning for why we need to fund pediatric cancer research. Not that many of us actually needed that reasoning, but there it is.

But you know that part on the graph: “Well, survival is a relative term,”  where it lays out the percentage of survivors living with severe and life-threatening health problems? Yeah. That.

Austin had an appointment with his kidney doctor yesterday, and, well, it’s not doing so great. I mean, it’s still doing. Doing whatever it needs to do every second of every day, despite being a quarter the size of its average kidney peers. But it has gotten noticeably worse since November.

We’re not in panic-mode or anything. This seems to be part of the process. And that’s not just me being super blase about everything; it’s true. His doctor is hopeful that with extra hydration and a shift in medications, we could see a dramatic turnaround. So Austin now has special permission to have a water bottle at his desk and to bring it along with him anywhere he goes. Of course, the last thing Austin ever wants is special permission to do anything that’s in any way different from what his classmates are doing. But who knows, maybe water bottles will become all the rage for second graders from now on.

Here are the details: His creatinine, that number we watched so carefully throughout the spring and summer of 2010, has shifted upwards in a way that concerns all of us. His estimated GFR (another number we watched so carefully in the spring and summer of 2010) is now 38. When/if it hits 30, he’ll be in Stage 4 kidney failure instead of his current Stage 3. His doctor, who is calm and collected beyond all measure, has assured me that he could hover at any one of these numbers for years on end. So his creatinine might decrease to 35 but then just sit there for three years, before decreasing again to 32. It’s not until it reaches 25 or below that we would start to test potential donors. And not until 20 or even 15 that he would need to start dialysis. So we have time.

She did say that her number one indicator of where someone sits on the continuum of kidney function is how they look, feel and act. And since Austin was doing his usual zoom across the room on her spinning doctor’s chair when she walked in the door, she feels pretty confident that he’s fine. I watch him every day and would whole-heartedly agree.

But as we edge ever closer to the five-years cancer-free mark, we know that we are never truly free of cancer. Its shadow will follow him, and all of us, for the rest of our days.

And now, as I return from a PTA meeting to edit and publish this post, I find myself under yet another dark shadow cast by cancer. The father of one of our past shavees, and a shavee himself last year, died Monday morning from a brain tumor. Unexpectedly. Despite, you know, the brain tumor. He was laughing yesterday morning. Mere minutes before he felt dizzy, laid down, and then was gone. Laughing and talking with the nurses in the extended care facility where he was recuperating from brain surgery before returning home to his wife and three kids. And then he was gone.

And now this woman, who is lovely and upbeat and always willing to help others, is without her partner, forever more. And her children, who were so so lucky to have known him, are without their father. They really thought he might die about three years ago and I believe, from the people who know them better than I do and from the wife’s own writing, that they lived each day to its fullest and never took anything for granted. But still. . .  Still.

And still, they move on. Two of this man’s sons would like to shave this Sunday in his honor. I am currently revamping the day’s schedule to fit them and their peers in before the 2pm funeral. And it is my deep honor to do so.

But you know what? Fuck cancer. And all of its shadows.

I guess people really needed to hear those words: Your work is not in vain, because that post was by far the most viewed and most shared one I’ve ever written. It’s not the best I’ve ever written, but the message undoubtedly resonated with people. We are hungry to know we are not alone in this fight (any fight) and that our advocacy does matter.

In a nice segue to that other cause that keeps me busy, I received a message last week from one of Austin’s old nurses at Rainbow. This is a woman I haven’t seen or heard from in years and I have to admit it took me a second to recognize her name since I knew her best before she was married. But she drew the parallel between that post and my work on behalf of St. Baldrick’s and said that I had long given a voice to children with cancer and their families and that what I attempt to accomplish with my event is, . . . you guessed it, “not in vain.”

Sometimes my success on that front feels small in light of such an enormous problem. The ten or twenty dollar donations I beg for, that one extra shavee I somehow convince to join us . . . how could any of this make a difference when we’re talking about thousands upon thousands of sick children and millions upon billions of dollars needed for research?

But it’s not small. It’s actually quite big.

Here’s what’s big: We have 133 people signed up to shave their heads next weekend. And more signing on every day. And a fair number of them are women and girls. That’s no small feat. Here’s what else is big: They’ve raised almost $50,000 for childhood cancer research. And by “almost,” I mean that by the time I post this, we’ll probably be there.

Here’s another thing that’s big: A grandmother who has signed up to shave her head not because any of her children or grandchildren have ever had cancer. But precisely because they haven’t. She feels just thankful enough and just lucky enough to be willing to do this on behalf of someone else. Someone she doesn’t even know.

Here’s what else is big: Rebecca has been gone for nine months but she looms large in the minds of many. She is so, so far from forgotten. Next Sunday, a cadre of her friends, from her earliest babyhood playmates to the classmates she never had enough time with, are either shaving their heads or cutting their hair in her memory. And she was never even bald. She held on to that crazy mass of curls until her last day on this earth. But still, they will sit up there, these little six-year olds who should never have to fathom such big and scary things, and they will shave their own heads for her.

And yet, it’s not really for her and they all know that. No amount of heads shaved, no amount of money raised, will ever bring her back, will ever make her well. But they will do this anyway. And that is big.

Rebecca’s best friend, the frick to her frack, is a six-year old first grader at Fairfax. She loves princesses, much as Rebecca did, and usually wears her long blond hair in a braid down her back. I don’t know her all that well, but I feel pretty safe in calling her a girly girl. And my assumption about girly girls is that they like their hair. Or they at least like to have hair. But nine days from now, Ruthie will be bald. Bald. And not only that, but her father, her mother and her four-year old brother will be bald alongside her.

None of that will bring Rebecca back. None of it will make them miss her any less than they do today. But they will do it anyway. So that no other six-year old has to lose her best friend.

And THAT is big.

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