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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.

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This is part two of a multi-part series addressing resident concerns about the upcoming bond issue (Issue 81) to fund facilities renovations in the Cleveland Heights-University Heights School District. Part 1 can be read here. Please feel free to share any and all of these posts with any undecided friends, family, colleagues or neighbors.

Another concern that has been voiced by a few people is, “Does this plan ignore the needs of the district’s 2,600 elementary students?”

Short answer: No, not at all. Long answer: Phase 1 of this plan, which is what we’re voting on in November, only funds renovations to the high school and Roxboro and Monticello Middle Schools. The elementary schools will be addressed in Phase 2, which won’t take place until another bond is approved in about seven years. The district would love to wake up tomorrow morning and have all of its buildings fully renovated. But it is completely unrealistic to do them all at once. Not only would it be even more expensive, it would be a logistical nightmare to oversee eight to eleven construction sites, not to mention figuring out what to do with all those simultaneously displaced children. As the plan stands, only one age group is affected at a time, allowing Wiley to consecutively serve as swing space for the next ten to twelve years.

If we were to flip the current plan and start with the elementaries first, we would disrupt the education of students multiple times. Take, for instance, a current second grader. If this bond passes in November and next year is used for planning and design, that child would spend 4th and 5th grade in swing space while elementary schools were renovated. Then, construction would begin on middle schools, thus displacing the same child during 6th and 7th grade. There would likely then be a one to two-year break for additional planning and another bond. Lo and behold, that child would enter high school right as construction was set to begin and they would again spend two years in swing space, meaning they would be displaced from their home schools for half their educational career. That is unacceptable.

The board and administration have promised to do their best to provide as smooth a transition as possible during the construction years, maintaining current academic, athletic and extra-curricular offerings no matter where students are housed. But those years will no doubt be difficult ones, as hundreds of students converge on a single site with varying expectations, routines and loyalties. It is one thing to ask our current students to spend one or two years making that sacrifice; it is another thing altogether to ask them for five or six years. The current plan ensures that no single students is affected by building construction more than once, for at most two years. This is a shared sacrifice for the common good that seems reasonable and that most of us can swallow.

Furthermore, and this is important, the elementary buildings won’t simply be ignored in the years between now and Phase 2. They should, in fact, get extra attention. The district currently uses funds from a 2002 permanent improvement levy for facility maintenance and repairs. That dollar amount is not large and is spread across all eleven buildings, with the majority of it focused on the high school, which, as one of the oldest buildings, represents 40% of the total square footage in the district. If the bond passes and the new funds it generates are designated for the high school and eventually the middle schools, the permanent improvement funds are freed up to be used solely by the elementary schools. This is a good thing, and will not only provide those buildings with more money but also the time and focus of the district’s maintenance crew, who will be separate from those firms newly hired to do the construction.

One last thing, of considerable import: It is the current elementary students who will benefit from this plan. Our investment is in them and their futures. My 4th grader will spend his last year of middle school in swing space before moving into a newly renovated, state-of-the-art high school. And my 1st grader will spend his first year of middle school in swing space before moving into a newly renovated Roxboro, followed by the newly renovated high school. It is today’s kindergarten class, the smallest among us, who will be the first cohort of children to squeak by with no disruption to their educations and get to enjoy their full middle and high school careers in newly renovated spaces.

This plan does not ignore the elementary students. It is, in fact, for them.

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Austin is having surgery this Friday at Akron Children’s. Surgeries, actually, two procedures rolled into one. They’re minor and non-cancer related.  Just a long overdue tonsillectomy and finger repair. You may remember that his swollen tonsils (besides keeping us all up at night) prevented him from being sedated for his May MRI, requiring us to go through the surgical department for full-blown anesthesia. While we hope he’ll have no future reasons to be sedated, we also realize that’s pretty unlikely given his history (and his future). And the poor finger . . . well, that thing’s been bothering him for more than a year as it’s now clawed and  unable to fully straighten. The lovely surgeons at Akron have coordinated their schedules so he only has to have one surgery, which I think (I lose track of these things) brings him up to eleven.

The interesting thing about this time is how nervous Austin is. He’s been so young every time in the past that all these crazy things happened to him without his full (or at times, even partial) understanding.  This time, he is well aware and asking many many questions: “What day are we going again? Is tomorrow when we leave at 6 in the morning? How long will I have a cast on my hand?” I don’t think he’ll have a cast on his hand at all, more like a bandage, but he’s definitely concerned about not being able to write at school.  His teacher has assured me this won’t be an issue (he is in kindergarten, after all), but Austin is a participator — he joins in to any and every activity possible with his full self, so standing on the sidelines will be tough. Especially when it comes to missing his regular Wednesday and Saturday tumbling classes. I already have to set silly rules to contain the near constant acrobatics, like no cartwheeling while crossing the street and no flips after 8pm. Of course, I think it’ll probably be his tonsils that cause the most pain, but that seems a bit too abstract for him to worry about. And I don’t exactly want to encourage him to fear something else!

Sp we go in early Friday morning and will stay over that night. Of course these are both typically out-patient procedures but since Austin is in no way typical, they want to observe his blood pressure and hydration. This will be our first overnight in the hospital in a record-breaking two-and-a-half years, since an unexpected fever in August of 2010. I just reread that old post, “Interruption,” not quite remembering the circumstances of that particular stay. Its closing lines were right on. It finally seems that, despite swollen tonsils or Franken-fingers, we have indeed made it safely to that wide-open future I could only hope for back then. We are living it.

 

I celebrated my twentieth high school reunion this weekend. It was so so fun, great to spend time with my current friends, my oldest friends, and even some new friends. I’m not going to dwell too much on the weekend’s events (some of them are a little blurry) but here is a picture of me and my girlfriends before heading out on Friday.

The really remarkable thing about the weekend is that Saturday, July 30 was the four year anniversary of Austin’s diagnosis and I just now remembered that! Just minutes ago as I was standing in the kitchen washing dishes and I thought briefly about how quickly summer’s going by, can’t believe it’s August 1st and all that, and suddenly I was like, “Oh my god! August 1 … July 30 completely passed me by!” It was nowhere on my radar screen, overlooked amidst the celebration.  Which I think is really really awesome.

So, now we just look ahead. Another year and then another, filled this time with health and normalcy instead of hospitals and sickness, happiness and hope over fear and misery. And one day, Austin and Braedan (and Toni) will be celebrating their twentieth Heights High reunions.

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.

Oooooooh, things just don’t always work out the way we expect them to. Like we needed more proof of this, right? The father of Mark’s best friend died yesterday afternoon and the funeral is on Saturday. Soooooo, we’re not going.

I’m on hold right now with Continental, trying to re-deposit my miles for use on a future (and hopefully soon) trip, although our flight was set to leave in less than 24 hours so I’m not sure I’ll be successful. If I am, we’ll try to go within the next two weeks or so.

Oh, I’m so so bummed. And now I feel guilty because I was actually mad at Mark for wanting to be there for his friend. Nice of me, huh? I was just so ready, so eager for this special family time. But of course, the world does not revolve around my travel schedule and a lovely woman has lost her husband. And our three dear friends have lost a father. And three more friends have lost a father-in-law. And six beautiful children have lost their beloved grandfather.

So, we’ll stand beside Scott and Cathy and all the rest this weekend, right where we should be. And Maine will be there in a month, standing beside the sea like it always has. The air will turn cooler and the leaves will turn colors and we’ll have our special and needed family time soon. Soon.

If it’s not one thing, it’s another.

Now that the hand has (mostly) healed and the kidney is (mostly) bouncing back, we’ve allowed ourselves to fully embrace our normal lives. We’ve allowed ourselves to believe that we lead normal lives.

But we don’t.

When Austin had all his scans two weeks ago, his hemoglobin was low. Not below the threshold that required an immediate blood transfusion, but on its way. His doctor recommended coming in the following week which I pushed off until this week because I didn’t want him to miss camp. And then over the weekend, he got sick. A fever, sore throat, complaining about his ear hurting, long and fussy nights. So yesterday, we had to go to the clinic anyway to match his blood for the transfusion and I asked for a doctor to see him just to be safe.

Weeeelllll: Fever, ear infection, suspected dehydration (which didn’t turn out to be the case, luckily) and most likely, anemia. So, you know what comes next, right? They placed an IV in his arm, started him on fluids and IV antibiotics, and we waited. And waited. I sat in a small chair with this big sleeping boy, sweating out his fever, in my arms. The hours ticked by until they found us a room on the over-crowded in-patient floor and over we went.

Another long and restless night, with Austin waking up every time his blood pressure was taken or every time he rolled over and became tangled in his IV line. Then he’d request that I join him in his bed, which was many times more comfortable than the rubber bouch (bed-couch) I usually sleep on. But by now he was sweating out the IV fluids and soaking the sheets underneath him, so I was back and forth, back and forth between bed and bouch, until we both finally slept soundly from 5 until 8 (Austin until 9:30 actually).

His fever has passed, and his kidney numbers look fantastic (which, of course, is all that really matters) and he is finally, just now, starting his transfusion, after a long and boring morning quarantined to our room. The blood, lest we forget, takes seven to eight hours so it may be past his bedtime but I will fight to be released as soon as he’s done.

One more night, one more time, one more brief trip down this dark road. Every time I dare think we are passed the danger zones, every time I dare imagine that we have a wide open future ahead of us, fate or bad luck or something steps in and snaps us back to reality. Not so fast, it says. You may feel normal every now and again, but you are not.

But, despite hospitalization for every little ear infection and sore throat, I hold tight to the belief that we have a wide open future ahead of us. That one I will let go of.

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?

And so, another year goes by.

July 30, 2007 was the day. The Day that everything changed. A day that started out like any other summer Monday. And ended with me and Mark sitting on a couch in a hospital room, holding on to each other for dear life, unable to finish our sentences, barely able to catch our breath. Our baby asleep beside us in a cage-like crib, an endless stream of nurses and doctors walking through our space, horrific and terrifying thoughts swirling through our minds.

The months and years that followed proved many of those horrific and terrifying thoughts true, along with some too horrific or terrifying for us to have even imagined on our very first night as the parents of a child with cancer. The twists and turns were steeper and scarier and more stunning than anyone could have prepared us for. And yet that one, that one thought that is too terrifying and too horrific to put into words, that is the one we have managed to escape.

And so today, tonight, on July 30, 2009, we sat in the backyard eating our grilled dinner, Austin dashing away from the table (and his vegetables) wearing nothing but a t-shirt (typical), his little soccer thighs lifting him high and strong. We toasted each other, “we made it this far,” and leaned back with a satisfied sigh. If only we’d been able to see back then, back when our biggest fears occupied so much space in our minds, if only we’d been able to catch a glimpse of this day. Fast forward two years and see the happy healthy boy running and diving across the grass.  We couldn’t see that of course.

And yet, perhaps, we must have seen it. That image of Austin must have been in our heads, or at least our hearts, that day and every single day since. Or we never would have made it.

Ah, somehow this boy keeps surprising us all. And this time with good news.

The lymph nodes came back clear, negative for cancer, which is the best possible outcome we could have received. The tumor that we originally went in for was Wilms’, but it looked similar to typical Wilms’ tumors after they’ve been treated with chemotherapy. This means it’s possible that this particular tumor is not a recurrence at all but was actually in him in some form during treatment. We’ll never really know if that’s what happened or not and it doesn’t impact how we’ll move forward but it would change the survival statistics, which happen to be pretty dismal for recurrences of Wilms’ tumor. (I will talk about that another day because right now I’m just too pleased.)

The other mass that we were afraid was a lymph node infected with his cancer turned out to be a tumor but not a lymph node at all. Again, no one is sure why this happened but it may actually be a part of the larger mass that sort of came loose, as they were found together in a net-like sack. It is, as usual, very unusual. But unusual we will take.

There’s still a possibility that we may do one six-day course of radiation, but we’re waiting for the St Jude’s people to weigh in again. Then we’ll have to think long and hard about the risks versus the benefits. The fear is that we still don’t know what else might be in there or what might appear another year from now. 

But we’ve learned to take things one day at a time and today is a very very good day. Today we exhale, today we celebrate. Today we look to the future together.

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