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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.

Those life moments, the ones you remember in great detail for all their spectacular-ness, like my fifteen minutes in the Blue Grotto, are not always the ones you’d expect. For me, at least, it was not my wedding day, which was incredibly special and incredibly spectacular, but it wasn’t one moment. And it was definitely not the birth of my children, which gave me the most spectacular gifts in my life, but were moments filled almost exclusively with fear and confusion (stories for another day … or maybe not!).

The few moments that stand out for me are random, like when my friend Jenny and I convinced the security guards at the Los Angeles Coliseum to let us down from our lousy seats high in the stadium to the front row for U2’s Zooropa concert. Jenny’s midriff baring top and supreme hotness had a lot to do with it (I think I was wearing a midriff baring top too, actually — it’s a good thing I don’t have digital copies of those photos!). Not a life-altering moment or anything, but being able to reach my arm out and practically touch Bono was pretty cool.

Scoring the tie-breaking goal against our arch-rival Shaker in a sectional field hockey game my junior year of high school is definitely up there in my top moments. I wasn’t a goal-scorer and in fact was playing sweep (as defensive a position as you can get short of being the goalie) when I was switched up to left wing in double overtime. My goal wasn’t even any good; not some act of superior athleticism, but a deflection off my stick that happened to land in the net. But it meant everything to me and my team and was a moment I will never forget.

Finishing the Chicago Marathon, my third of four, in under four hours ranks up there too. I had always wanted to run a sub-four and, throughout that race, I was continuously updating my mental calculations. Realizing I was on track to do it and then realizing I could be under 3:55 and then realizing I’d be under 3:50 and finally crossing the finish line at 3:46 was super super cool.

None of the cancer moments are in my top list. Even when we received the best possibly news, better than anything we had known to hope for, there was always something else. Our joy was tempered by whatever lay ahead of us, but the next big procedure, the unanswered question, the knowledge that no good news was ever quite enough. Instead of a joyous jumping up-and-down celebration, we would fall backward on the hospital bed and say, “Thank god,” an exhale of relief.

Maybe our big moment still lies ahead.

Last Tuesday, we went to the Natural History Museum and I took some photos of the boys sitting on the stone bear outside, right where we’d taken pictures last March. Check out the difference:

More hair, same big smiles

To see these images of my boys sitting in the exact same spot, just eight months apart, makes me appreciate just how far we’ve come. A long long way.

So long, in fact, that it’s time for more scans. This Thursday, he’ll have his usual monthly labs and abdominal ultrasound, followed by the every-three-months chest CT. It’s always a little unnerving to go through these tests. I don’t actually believe that anything bad will show up, but I can’t help but play out the scenarios in my mind. I always imagine the conversation with our doctor, the heavy “Can you talk?” on the phone, the stunned silence, the devastation, the resolve to fight yet again.

Or the opposite, which is what we should get, better get: The happy news, no changes, all clear (or mostly clear, which would be good enough). The relief, one month closer, another small victory to celebrate. A long way. We’ve come a long, long way.

As we’ve been leaning this way and that over the past few days, swaying back and forth, we’ve acknowledged, with a degree of defeat, that there is no one thing that’s going to suddenly appear that will make this decision any easier.

But we were wrong.

This afternoon, as I sat in a reclining chair (just relaxing) down at the hospital while Austin, hooked to an eight-hour blood transfusion, slept in my arms, I held my breath and opened a return email from the lead author of the study protocol we’ve been following. We’ve never had any contact with this doctor, the head of Pediatric Oncology at Children’s Hospital-Los Angeles, whose name I simply typed into Google to search for an email address. His response, which I was quite frankly surprised to receive at all, said that there is NO STATISTICAL BENEFIT for children who did more than one maintenance cycle of chemotherapy. Here are his words, copied from my email: “Due to the small numbers, we were unable to detect any statistical difference or advantage for those patients receiving > 1 maintenance cycle.”

Well. That pretty much does it. Barring anything suspicious on Monday’s abdominal ultrasound and chest CT, that pretty much does it. There are so many known disadvantages to carrying on and no known advantages. How could we not choose to stop? It would almost be crazy to keep going.

We’ve been leaning in this direction, as I think you could tell, wanting to stop. But unsure whether we wanted to stop just because continuing would be so horrible or because it was really the right thing to do. Every time we check in with each other, last thing before drifting off to sleep and first thing upon waking in the morning: “Which way you leanin’ now, honey?” our answer is, “Weeeeellll, I sort of think we should stop, buuuuuuttttt . . .”

And now, we can feel like we are making the best decision given the information we have. It is not a victory, not a free pass to the future. We still face every unknown we faced yesterday: His kidney could fail anyway, his cancer could return and be even harder to treat. But at least, we have some peace in knowing we are not skimping out, we are not cutting loose early for selfish reasons.

The big question I assume most of you are asking, because I’ve asked it myself, is: Why does anyone do more than one cycle if there’s no detectable benefit? I don’t have a scientific answer for that but I think it’s because the researchers were trying to find that detectable benefit. They were hoping that four cycles would push the survival rate up to 60% and five cycles would push it up to 65%. But that didn’t happen. Even with extra weeks and months of chemo, the best number they could reach was 50%.

Now that shouldn’t make us feel super confident moving forward, and trust me, it doesn’t, but if this cancer returns, well, it might have returned anyway. I mean, if chemo is gonna work, it should have worked, right?

We had dinner with my parents the other night and my mom came armed with scrap paper charts to list out the pros and cons of each option. My dad had already made up his mind (stop), but the rest of us were still hemming and hawing. Before we left, my mom (still undecided) landed on an important point: Stopping is the one chance, the only chance, we have at a huge victory, at (and you know she didn’t use this word and I can’t believe I’m about to either, but here goes) at a miracle. Stopping is the only way we can ever look back and say, “Wow, we really, really did it.  And we didn’t have to sacrifice every last piece of ourselves.  We beat that damn thing and we’re still intact.”

We might be able to do both: we might be able to remain intact and still win. And that is what we are going to try to do.


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